Children
wi t h c o m p l e x c o m m u n i c a t i o n n e e d s .
Th e p a r e n t s ’ p e r s p e c t i v e
Gonda Pickl
Stockholm University
Department of special education
SE-106 91 Stockholm, Sweden
[email protected]
Children
with complex communication needs.
The parents’ perspective
Gonda Pickl
Stockholm University
©Gonda Pickl, Stockholm and Graz 2008
ISSN XXXX-XXXX
ISBN 978-91-7155-693-6
Printed in Sweden by US-AB, Stockholm 2008
Distributor: Department of special education
Abstract
Keywords: Children with complex communication needs, augmentative and
alternative communication, parents’ views on their children’s communication.
The aim of this dissertation is to increase the understanding of how parents
of children with severe and multiple disabilities and complex communication
needs view their children’s communication and their communication aids.
The participating children differ in age, in their developmental and communicative levels as well as in their socio-cultural backgrounds, but have in
common that they all are using one or more modes of augmentative and alternative communication (AAC), involving no, low or high technology.
The study is qualitative and based on interviews with the parents being
the interview partners, through which I aimed to get insight in how the phenomena of AAC and communication under challenging conditions per se is
perceived by the parents. The transcribed interviews were then interpreted
and analyzed for common patterns in how parents experience their children’s
communication and related challenges based on the children’s severe communication limitations and their needs for alternative communication modes.
Conducting qualitative research interviews is closely linked with both
the phenomenological and the hermeneutic tradition; my study is inspired by
those research traditions, although it neither is phenomenological nor hermeneutical in the formal sense.
The results of the study indicate that despite the differences in the children’s abilities and limitations and family backgrounds there are common
patterns regarding what parents perceive as the biggest challenges in communication with the child, regarding situations when communication between parents and child works best, and regarding the use of communication
aids in and outside the family. While most parents are interested in supplying
their child with a technical communication aid, these rarely seem to help
bridging communicative deficits in areas which are essential for the parents,
e.g., sharing events or expressing emotions.
The outcomes of the interviews reveal the necessity to include parents to
a great extent from the beginning throughout the course of intervention to
better meet the challenges the parents of a child with complex communication needs are facing.
Preface
When in the early 1980s I started working as a special teacher and speech
language pedagogue in Graz, Austria, half of the children in my class were
unable to communicate verbally. Modes of augmentative and alternative
communication (AAC) had not been part of my studies, as AAC in general
at that time in Austria was not yet an option for children with complex
communication needs.
During a voluntary internship in a Canadian hospital I met a child who
very much reminded me of a boy in my class, only that the Canadian boy
was able to communicate via Bliss symbols. After having completed a training in the symbol system I started to introduce it to non speaking students at
home. While for some the symbols meant the entrance to communication,
others clearly had needed different options to successfully express themselves.
The growing interest in alternative communication modes was my
motivation to apply to the University of Wisconsin, Madison, USA, where in
the mid 1980s I was a graduate student at the department of communicative
disorders and learned about the range of AAC possibilities existing at that
time, including technical communication aids.
Models changed over time, the model of candidacy, where the individual
had to have certain abilities to be a candidate for AAC, was replaced by the
model of participation: rather than trying to change the individual we started
to focus on the environment and its barriers regarding communication and
participation of individuals with disabilities.
Thus working in the field of AAC around the turn of the millennium
looked promising: as professionals we had all those wonderful tools available and increasing knowledge about how to remove or at least reduce environmental barriers. Many parents were highly interested in technical communication aids with the result that more and more children had their own
devices. However, while communication aids were being used fairly regularly in classrooms or therapy situations, they were rarely used within families of children with severe disabilities and complex communication needs.
Apparently the devices failed to meet the challenges parents were facing in
the daily communication with their child. To investigate the underlying reasons for this phenomenon was the primary motivation for this study.
Stockholm and Graz, June 2008
Gonda Pickl
Acknowledgements
First of all I would like to thank the children and their parents who participated in this study. The parents who served as interview partners took the
time to meet with me for conducting the interviews and were willing to share
their experiences with me which sometimes were very personal ones.
I also want to thank the special pedagogues and speech language therapists who contributed to this study by sharing their knowledge.
My sincere thank you goes to my scientific supervisor, Professor Jane
Brodin. Jane, you not only taught me about research, guided me through this
study and supported me when I took courses at the Technical University in
Vienna, you also opened your home for me during my visits to Stockholm.
Thank you and your husband Olle for all your help, friendship and hospitality.
I also want to thank my readers Christina Hellman, Eva Berglund and
Bouzena Hautaniemi for commenting the manuscript.
Thanks to Magnus Magnusson, you helped me getting started at Stockholm University and aroused my interest in the phenomenological and hermeneutical research traditions.
Thanks to Anneli Källström for your hospitality and friendship, for inviting me to your home, for helping me improve my Swedish and sharing your
wonderful Swedish recipes.
Thank you Eva Bernat, head of the special pedagogical center for children
with speech-language impairments in Graz, my boss. You were always encouraging and helpful, I knew I could turn to you in case I needed your help.
Thank you for being such a great boss!
Thanks to Dani and Guido Pinkas and Robert Ginthör for your help with
computer problems. Dani and Guido, it is wonderful to have neighbors who
know their ways with computers; Robert, without you, no SU mall on my
computer!
Thank you Emilia and Dominik Pinkas, you kept reminding me that there
is a life besides work and studies.
Thanks to Margaret Toth and Inge Vogtberg for your friendship, understanding and support, and thanks so much to my friends Daniela, Hanna,
Ernst, Clara and Florian for coming with me to Stockholm to be with me at
the end of this four years long journey.
I would like to offer sincere thanks to the Stockholm Institute of Education for financing two months and thus enabling me to take time off from
work and focus on finishing the dissertation.
I also want to thank the research institute of the Erzherzog-JohannGesellschaft in Graz for financial support, as well as the pedagogical high
school (kirchliche pädagogische Hochschule) Graz, Eggenberg, for support
within the teaching staff mobility.
I want to dedicate this dissertation to my father. Papa, ever since I was a
child you had inspired me with your love for Sweden and for the Swedish
people. You kept telling me how much it had meant to you to live and work
in that country while you were a student. You had not lived to see me start
my studies in Sweden, but I know how much you would have appreciated it.
Contents
Abstract .......................................................................................................... iv
Abstract ........................................................................................................... v
Preface ........................................................................................................... vi
Acknowledgements ....................................................................................... vii
Contents ......................................................................................................... ix
Introduction ...................................................................................................13
The meaning of language and communication............................................................13
Communication in children with severe and multiple disabilities..................................15
Children with cerebral palsy ........................................................................................16
Terminology ..................................................................................................18
Definitions of and changes in AAC..............................................................................19
Development of language and communication.............................................21
Development of expressive oral language abilities......................................................21
Pre-lingual period...................................................................................................21
Production of the first words ..................................................................................23
Development of semantic organization skills...............................................................24
Development of receptive language abilities ...............................................................25
Levels of receptive language development ............................................................26
Development of early communicative abilities.............................................................28
Pre-linguistic communication .................................................................................28
Intentional communication .....................................................................................29
Symbolic communication .......................................................................................31
Communication challenges in children with severe and multiple disabilities 34
Assessing communication in children with severe and multiple disabilities .................35
Changes in models ................................................................................................36
Aim of the study ............................................................................................39
Method ..........................................................................................................40
The phenomenological approach ................................................................................41
Stages of investigation ................................................................................................42
Stage 1 – thematizing ............................................................................................42
Stage 2 – designing ...............................................................................................43
Stage 3 - interviewing ............................................................................................43
Stage 4 – transcribing............................................................................................47
Stage 5 – analyzing ...............................................................................................48
Stage 6 – verifying .................................................................................................48
Stage 7 – reporting ................................................................................................49
Target group for the study...........................................................................................49
Case study research ...................................................................................................50
Ways to conduct case study research ...................................................................51
Ethical principles in research.......................................................................................51
Description of the children in the study .........................................................55
Children of the impressive language group .................................................................58
Alexander ..............................................................................................................58
Nadine ...................................................................................................................59
Moritz.....................................................................................................................60
Timmy....................................................................................................................61
Jan.........................................................................................................................62
Charles ..................................................................................................................63
Sandro ...................................................................................................................64
Elisabeth................................................................................................................66
Children of the expressive language group .................................................................67
Desiree ..................................................................................................................67
Tina .......................................................................................................................69
Modes of intervention and communication strategies..................................................70
Go-and-stop – activities .........................................................................................70
Signing as a means of communication for children with multiple disabilities ..........71
Communication passports or contact books ..........................................................74
Objects of reference ..............................................................................................75
Technical communication aids...............................................................................75
Communication via pictures and symbols ..............................................................78
Results of the interviews ...............................................................................82
Results of the interviews – impressive language group...............................................83
Summary of the parents’ answers (impressive language group) ...............................100
Results of the interviews with Desiree’s and Tina’s parents – expressive language
group.........................................................................................................................101
Summary of the parents’ answers (expressive language group) ...............................108
Comparisons in the interviews with parents of children from both language groups..109
Discussion ...................................................................................................111
The appropriateness of research based on interviews ..............................................111
The interviews...........................................................................................................113
The interview situation .........................................................................................113
Parents’ views on the interviews ..........................................................................114
Answers to the research questions ...........................................................................115
Challenges for parents regarding their children’s limited communication.............115
Which are the situations when parents use communication aids at home?..........117
Situations when parents would not use the communication aid, and reasons for not
using it .................................................................................................................119
Correlation of the frequency a communication aid is used at home and parental
expectations of its use outside the home .............................................................123
Correlation between cognitive and physical abilities and preferred communication
aids......................................................................................................................124
Family involvement ..............................................................................................128
The issue of dependency.....................................................................................129
Bilingual AAC users .............................................................................................130
Possible considerations for intervention ....................................................................132
The child’s inability to express and explain emotions...........................................132
Difficulties of family members with the child’s communication .............................132
The illusion of the ideal communication aid for children with severe and multiple
disabilities .................................................................................................................133
Concluding remarks ....................................................................................136
Summary.....................................................................................................137
References ..................................................................................................144
Appendix 1 ................................................................................................................156
Desiree – a longitudinal case study .....................................................................156
Appendix 2 ................................................................................................................173
Interview guide ....................................................................................................173
Appendix 3 ................................................................................................................177
List of words related to the descriptions of the participating children and their
communication aids .............................................................................................177
Appendix 4 ................................................................................................................179
Description of the communication aids which are used by the children in the study
............................................................................................................................179
Abbreviations
AAC
CP
ICT
SGD
VOCA
Augmentative and alternative communication
Cerebral palsy
Information and communication technology
Speech generating device
Voice output communication aid
Introduction
In the center of this dissertation are children with severe and multiple disabilities and complex communication needs and their parents. Having complex communication needs in this case means that verbal speech either is not
existent or is too limited to express needs and wants or to share messages
with others.
The aim of this dissertation is to gain better understanding of how parents
of children with severe and multiple disabilities and with no or limited verbal speech view their children’s communication and their communication
aids. The study is based on interviews with ten families with children with
multiple disabilities and complex communication needs. A detailed description of the children is presented in a separate chapter. All families who took
part in the study are living in Austria, the country where this study was conducted. The children differ in age, in their developmental and communication levels, in their social environment (e.g., presence of siblings, parents
living together versus being divorced, one versus both parents working) as
well as in cultural backgrounds - in three families at least one parent is coming from another country with a native language other than German, and the
children are growing up in a bilingual environment.
The children have in common that all of them are using one or more
modes of augmentative and alternative communication (AAC), involving no,
low or high technology. The reason why I chose such a diverse group was
that I wanted to find out whether there are common patterns in how parents
experience their children’s communication and related challenges based on
the children’s severe communication limitations and their needs for alternative communication modes.
The meaning of language and communication
When talking about communication we are not only talking about transmitting messages between a sender and a receiver, but also about sharing feelings, experiences and activities (Brodin, 2000). Generally, the current trend
is steering away from the sender – receiver definition of communication;
instead, human communication is seen as a joint action between persons in
order of jointly establishing meaning (Soto & von Tetzchner, 2003; von
Tetzchner & Martinsen, 2000).
13
Language and communication are different areas, each having its own internal logic, have different roots and are based on different evolutionary
prerequisites. While all living species have the ability to communicate,
though on different levels, language in hominid development is a relatively
young accomplishment and is not bound to a specific peripheral organ
(Homburg, 1994). According to Light (1989), Motsch (1994) and Brodin
(2005), communicative competencies comprise more abilities than understanding words or sentences and being able to express those.
Homburg (ibid) defines four types of communicative competency: The
competency of content (based on cognitive abilities to understand the topic of
communication), the competency of relationship (based on the ability to
relate to the communication partner and his/her expected reactions to communicative messages), expressive competency (based on the knowledge
about the linguistic code and the medium of communication) and situation
related competency (based on the ability to adjust to changing personal and
situational conditions). Only the third competency, knowledge about the
linguistic code, is language connected; the other three competencies, which
are equally crucial for successful communication, are of non linguistic type,
thus communication clearly is more than language.
Human communication is influenced by culture, values and traditions, but
most of all by language. Toolan (1996, p. 15) prefers to speak of “coming
into language” to using terms like “language development” or “language
acquisition”. Language defines the quality of communication and enables the
human being to refer to the world independent of space and time (Homburg,
ibid). According to Zollinger (1995), language has a communicative as well
as a representative function: In its representative function the goal is to create images and ideas in the communication partner. In the communicative
function it aims to change intentions, ideas or emotions in the communication partner.
Light (1989) proposed a definition of communicative competence for individuals using AAC. To her communicative competence is a relative and
dynamic concept as well as an interpersonal construct. That construct not
only is based on functionality and adequacy of communication, but also on
sufficient knowledge, judgment and skills in four interrelated areas or competencies. Light’s (ibid) first two competencies refer to knowledge and skills
in the use of the tools of communication, whereas the last two competencies
reflect the individual’s functional knowledge and judgment in interaction:
Linguistic competence (comparable to Homburg’s expressive competency),
operational competence (comparable to Homburg’s competency of content),
social competence (comparable to Homburg’s competency of relationship),
and strategic competence (comparable to Homburg’s situation related competency).
14
Light’s and Homburg’s definitions of communicative competence are
closely related and similar in the aspect of defining communication independently of verbal language.
Communication in children with severe and multiple
disabilities
When it comes to children with severe and multiple disabilities there are a
number of difficulties in communication, the most prominent ones being the
passive communicative behavior of these children, missing initiation of
communication, the slow communication rate and limited conversational
strategies such as turn taking (e.g., Brodin & Thurfjell, 1996; Trevarthen,
2001). When the children are in need of AAC, assessment and intervention
frequently aim for finding the right communication aid to best meet the
child’s needs and to train the child and his/her caregivers to use the communication aid in the most efficient way the child is able to.
Children with severe and multiple disabilities cannot be seen as a group of
persons who, due to similar impairments, will show similar symptoms, capabilities and difficulties. The combination of impairments (e.g., cerebral palsy
plus a sensory impairment, many times accompanied by cognitive deficits of
varying degrees) makes each child unique in his/her abilities and needs. The
challenge in planning for assessment and intervention for this group of persons is really their heterogeneity (Granlund, Björck-Åkesson, Brodin & Olsson, 1995). However, “the multiplicity of existing needs should be the point
of departure” (Lindstrand & Brodin, 2004b, p. 179).
According to Brodin and Lindstrand (2004), few studies have been conducted to survey and describe what meaning the use of information and
communication technology has for families with children in need of special
support. Frequently existing AAC-systems are rarely or not at all used by
non speaking children and their caregivers (von Tetzchner & Martinsen,
1996), who rather rely on the users’ own limited possibilities, be it a few
words which can be uttered intelligibly, pointing, mimics or eye gaze. They
seem to prefer possible misunderstandings and incorrect interpretations of
these expressions to the many times much more cumbersome and slower
mode of technically aided communication with its restricted vocabulary,
especially when the output is recorded speech. Previous studies conducted in
different countries indicate that children with complex communication needs
tend to use their communication devices only at certain times and in certain
contexts and that the devices are rarely used within families. Udwin and
Yule (1991) investigated the use of communication boards within twenty
families of children with cerebral palsy and found an extremely limited use
of symbols in home settings. A study conducted by Murphy, Markova,
15
Noodie, Scott and Boa (1995) investigated the use of communication devices
among 73 children, 37 adolescents and 107 adults with cerebral palsy. About
22 percent used the devices only in formal situations such as therapy,
school/day placement and work, and hardly or never during leisure activities.
According to von Tetzchner and Martinsen (1996), parents in Norway preferred to communicate by asking their children closed questions that can be
answered with a “yes”- or “no”- response, and communication devices were
mainly considered as educational instruments rather than means of communication. Salminen (2001) presented a study on the life of six children with
cerebral palsy in Finland who used computer aided communication; these
children were all using Bliss symbols as their mode of communication and
used computers to access their communication system rather than dedicated
communication devices. That study revealed that computer aided communication devices were used only sometimes, in certain contexts or hardly at all.
The results of these studies indicate the seemingly contradiction that although communication devices obviously are considered useful tools for
persons with complex communication needs, they seem to be used rather
infrequently by the families of these children.
Children with cerebral palsy
A severe cerebral motor disorder as a consequence almost always will lead
to impairments of multiple sensory functions, but may not necessarily be
accompanied by a cognitive malfunction as a primary disorder (Lind, 2003;
Sevenig, 1994). Therefore, the authors prefer to talk about persons with severe cerebral palsy, no matter how these persons appear to perceive their
environment and react to it, as long as, due to the severe motor impairment,
no precise evaluation outcome regarding the cognitive and communicative
abilities of the person is achievable.
According to Batshaw (1997), 60 to 70 percent of all children with cerebral palsy also have some degree of intellectual disability. In addition, approximately 46 percent of the individuals have visual problems, resulting in
central visual impairment, loss of visual acuity or visual field cuts. An estimated 30 percent of this population has a hearing loss, and seizure activities
are seen in about 50 percent of all individuals with cerebral palsy.
Regarding the issue of communication, the incidence of speech and/or
language disorders in children with cerebral palsy is of special importance:
dysarthria (a speech disorder associated with motor impairments) is common, sometimes to the degree of anarthria, where the speech of the child is
largely unintelligible. Overall language delay may be associated with the
problems of cognitive and/or sensory impairment and also with social – environmental factors such as learned helplessness (Beukelman & Mirenda,
1998; Seligman, 1995). About two thirds of all persons with intellectual
16
disabilities have communication disorders, and almost 100 percent of all
persons with profound intellectual disabilities are in need of communication
support (Brodin, 1991; Brodin & Thurfjell, 1996; Granlund, 1993).
Many children with cerebral palsy and complex communication needs experience difficulties learning to read and write. A possible explanation could
be that articulation impairments affect the storage of phonological information and how that information is manipulated in memory (Dahlgren
Sandberg, 2001; Dahlgren Sandberg & Hjelmquist, 1996).
In a cooperation with the rehabilitation center Björck-Åkesson, Brodin
and Fälth (1997) conducted a longitudinal study on four children with
cerebral palsy. The project started when the children were below the age of
one year, and the focus was on intervention in communication. The study
comprised interviews with the parents and relatives; video was used as a tool
to collect data and to instruct the parents about their children’s
communication. The results strengthened the importance to include and
empower parents from the beginning of intervention. The inclusion of
parents, but also grandparents and siblings, influences the outcome of
intervention in communication.
17
Terminology
In Austria, the term “schwerstbehindert” (the German expression for “most
severely disabled”) always refers to a profound cognitive impairment and
also determines the education in schools. No matter whether the child is
placed in an inclusive or special classroom (the choice is up to the parents,
but the trend is going towards inclusive education), the child will be educated according to a special curriculum, which is open and allows for a wide
spectrum of variations. Granlund et al. (1995) define profound disabilities as
severe to profound disabilities in relation to normal development within at
least two functional areas (e.g., motor and cognitive function, visual and
cognitive function, etc.). When discussing a child being profoundly disabled
his/her cognitive functioning will be impaired.
The International Classification of Impairments, Disabilities and Handicaps (ICIDH) (WHO, 1980) built its classification on the premise of an existing hierarchy between the three terms impairment, disability and handicap: an impairment relates to the body-organs and –functions, a disability
refers to a person’s capacity in using these functions (e.g., the functions of
vision or hearing), and a handicap refers to the consequences of a certain
disability for that person’s interaction with his/her environment (Granlund et
al., 1995). That classification was perceived as being too medical, so it was
revised in 2001 as International Classification of Functioning, Disability and
Health (ICF): functioning is explained by the degree a person is able to participate in activities which are appropriate for that person’s age and social
circumstances. A disability is a multidimensional phenomenon and the result
of the dynamic relationship between a person’s health, health associated
problems and facts that relate to that person’s environment (Fischer, 2000).
A person’s individual prerequisites, his/her capacities and limitations, in
relationship to the demands of society and environment define the size of the
gap which is the consequence of an impairment for an individual in a given
society (e.g., a reading disability only leads to a handicap in a reading society by excluding the individual from the majority of information sources,
while in a society with oral tradition only he/she still might be fully functioning).
Over the past two decades changes had happened in the attitude towards
people with severe and multiple disabilities and in the way the degree of a
disability is classified, namely rather according to a person’s amount of
needs than to the obvious severity of an impairment. The change in attitudes
18
also led to new terminology: In general, at present there is a desire to avoid
any terminology that has a tendency to stigmatize a certain group of persons,
including terms like “handicapped” or “disabled”; the preferred term in Anglo-American countries became “persons with special needs” (later “persons
in need of special support”, since people were arguing that everyone has
special needs) or “persons who are physically / mentally or otherwise challenged” (Goossens’ & Crain, 1992). Equally, instead of labeling someone as
having “severe communication impairments” today’s terminology prefers
the term “complex communication needs” (Granlund, Björck-Åkesson &
Seligman-Wine, 2002). Terms like “challenged”, “persons with special
needs” or “persons in need of special support” have the obvious advantage
that a need for special support implies a need for communication intervention, regardless on which developmental level a person is functioning.
Definitions of and changes in AAC
AAC was first defined by ASHA (American Speech Language Hearing Association) in 1989, 31, p. 107: “Augmentative and Alternative Communication is an area of clinical practice that attempts to compensate (either temporarily or permanently) for the impairment and disability patterns of individuals with severe expressive communication disorders (e.g., the severely
speech-language and writing impaired).” In this definition it is emphasized
that intervention should make use of “the individual’s full communication
capabilities, including any residual speech or vocalizations, gestures, signs
and aided communication.” (ibid). It is noteworthy that the ASHA definition
clearly aims for persons with severe expressive language disorders. Persons
with impressive impairments, facing problems to comprehend language, are
not yet taken into account.
According to von Tetzchner and Martinsen (2000), augmentative communication serves the purpose to supplement and support a person’s speech and
language where the acquisition of oral speech is in question. When in faceto-face communication the individual communicates in ways other than
through oral speech, including manual and graphic signs, writing, Morse
Code, etc., the authors speak of alternative communication. Already 1996
von Tetzchner and Jensen had made the further distinction between the attributes “non speaking” and “nonverbal”, terms which in publications are
mostly used as synonyms, although the authors are attributing them to different language groups. “The term non speaking is used to indicate that an
alternative language form is used, while use of the term non-verbal will indicate that the person in question lacks any kind of language: spoken, manual
or graphic.” (ibid, p. 10).
Thus a non speaking person has knowledge about language, but lacks the
capabilities to produce oral speech and thus needs an alternative mode for
19
expression. Such a person belongs to the expressive language group (and
therefore would fall into the original target group for AAC-intervention of
the ASHA definition of 1989). For a person who has not yet acquired a functional language system and thus lacks the ability to both comprehend as well
as use language in any mode von Tetzchner and Jensen (ibid) use the term
nonverbal. That person would belong to the impressive language group and
would likely have not been considered a possible candidate for AAC in the
early years of the field.
In Anglo-American and Scandinavian countries AAC has been an option
for non speaking individuals, the majority with physical disabilities, since
the early seventies of the last century - at that time mostly in the form of
alphabet- and picture boards and Bliss-Symbols (McNaughton, 2003); the
foundation of the Bliss Symbolics Communication Institute (BCI) in Toronto
1975 has played an important role in the development from what first appeared to be a rather exotic experiment to an established method (ibid).
However, in the pioneer years of AAC children who were not candidates
to acquire at least a certain number of Bliss- or picture symbols had not been
provided with the chance to learn an alternative communication mode. It was
not before the mid-1980s that persons with severe intellectual disabilities
were considered candidates for AAC interventions (Beukelman & Mirenda,
1998). Those modes had been the only ones available as alternative communication possibilities (aside from manual signs, which have been aiming at a
different target group). The reason why pedagogues and therapists focused
on those systems, and why they did not consider persons with severe cognitive deficits as possible candidates for AAC is unclear.
At present no child would be excluded from AAC intervention based on
his/her developmental level. Von Tetzchner and Martinsen (2000) stress that
children in need of AAC differ in terms of language comprehension, social
skills and interests, and as a consequence objectives and methods to facilitate
conversational skills need to be equally different.
The following chapter will provide a short overview about the development of the different aspects in the early periods of language acquisition.
Communication development as well as the development of receptive and
expressive language (except the areas of acquisition of the phonological
system and development of phonological awareness) in children with typical
development will be discussed, as these aspects are important when it comes
to assist a child with communicative challenges. A child who does not develop or remains severely restricted in his/her speech will only profit from
an AAC-mode that is relevant for his/her communicative stage.
20
Development of language and
communication
Before a child utters his/her first intelligible word he/she has passed several
levels in language development. Speech and language do not start with the
first word, but with the social interaction between caregiver and child. The
child needs to have acquired certain abilities as prerequisites for social interaction before he/she will be able to consciously and meaningfully make use
of the linguistic system (Bruner, 1987; Tomasello, 2003). The following
chapters will briefly discuss the acquisition of speech and language during
the first year of life of children with typical development. Typical development means the developmental pattern most children follow and in this text
substitutes the concept “normal development”.
Development of expressive oral language abilities
The production of speech sounds is the most complex motor achievement in
the human being (Papousek, 1998; Yavas, 1998). Movements for articulation
and speech have their origin in the movements necessary for the oral intake
of food and liquids – the same organic systems are involved in both activities. Parents of children with speech impairments frequently report the child
having had problems with breast feeding, sucking, swallowing and breathing
(Vater & Bondzio, 1992). Sucking movements are the infant’s first reactions
to the visual (e.g., mimics, smiling) and vocal (e.g., sound intonations, words
in slightly higher pitch) approaches of others, followed by eye- and head
movements and later smiling – the primary dialogue (e.g., Bulowa, 1979;
Katz-Bernstein, 1996; Papousek, 1996; Tomasello, 2003; Trevarthen, 2001).
Pre-lingual period
The term pre-lingual implies that in a child’s first utterances there is no stable relationship between the phonemic structure and the meaning of the utterance (Yavas, 1998). In the child with typical development this stage usually lasts during the first year of life.
The first month – in the literature referred to as the crying period (Acebo
& Thoman, 1995; Papousek, 1998; Romonath, 1994) – is characterized by
21
reflexive vocalizations to express elementary needs such as being hungry or
being tired. Immediately after birth the infant with typical development displays the ability to imitate visual models of potential oral motor movements
for articulation (Papousek, ibid; Trevarthen, 2001).
During the cooing period, between one and four months, the child utters
predominantly velar sounds, frequently combined with central vocals such as
[a] or [ə] (Springer, 2005). The period between four and six months is called
the first babbling period, during which the child produces vowel-consonant
utterances in the relation 4,5 (vowels) to 1 (consonants) (Jusczyk, 1997;
Romonath, 1994). Between three and six months the child is able to imitate a
rise or fall in pitch, between four and five months patterns of intonation (Papousek, ibid). Gradually the variety of produced consonants increases and
the relation between vowels and consonants becomes more equal. During
this period the child is also producing phonemes which are not part of his/her
native language. The articulation of syllables is based on the integration of
subroutines which had been practiced earlier: segmenting of exhalation- and
phonation-time, regular and rhythmical repetitions, well tuned coordination
between opening and closing movements of the vocal tract and breathing and
activating of the vocal folds, and transition from glottal to supraglottal articulation.
With the production of regularly uttered syllables, which are the universal,
rhythmical basic units of all living languages, the infant already has reached
the phonological criteria of mature speech (Oller & Eilers, 1992). According
to Locke (1990) the first production of regularly uttered syllables is a milestone in neuromotor maturation, as in the child with typical development it is
paralleled with rhythmic activities of arms and hands and bi-manual coordination.
The time between six and twelve months, the second babbling period, is
dominated by syllabic elements, mostly consonant-vowel-sequences, e.g.,
[dada]. In contrast to the first babbling period the child now starts to increasingly imitate phonemes and phonemic sequels which he/she hears in his/her
environment. The utterances are characterized by phonemic and prosodic
features as they are typical for the child’s native language. Children at this
stage are now increasingly producing frontal consonants such as [t] and [d].
Regarding the vowels a shift from central to peripheral production, as in [i]
or [æ], can be observed (de Boysson-Bardies & Vihman, 1991; Locke, 1990;
Oller & Eilers, 1992). According to the authors, independent of the language
the child will acquire sound productions during this period are characterized
by plosive and nasal sounds, while fricative and liquid sounds typically are
avoided.
Towards the end of the first year the child is producing a greater variety in
his/her syllable sequels, combining different consonants and vowels, e.g.,
[dabedabe] (Springer, 2005).
22
Production of the first words
During the stage of the acquisition of first words the child practices and imitates the phonological specifics of his/her native language and begins to understand the connection between arbitrary constructions of specific sound
patterns and meaning units (Papousek, 1996; Tomasello, 2007). Imitation is
the means by which human beings predominantly are learning. Already more
than 2300 years ago Aristotle described how humans relate to their social
and natural environment in a mimetic way (source: Fuhrmann, 1984). Thus
mimesis not only is a principle in art, but also a general anthropological
principle. Aristotle observed that human beings learn through imitation, but
also are enjoying imitations, which becomes obvious when children are repeating patterns over and over again.
In the mid nineties of the last century a special type of neuronal cells was
discovered, which later became known as mirror neurons (Bauer, 2005).
Earlier it had been observed that certain neurons get active in the brain as
soon as a person is engaged in an action; now it became obvious that the
mere observation of another individual’s action leads to neuronal activities
in the observer’s brain. The result is a kind of simulation or mirroring of the
neuronal processes of the other individual, leading to unconscious imitations
or just imaginations of the imitation, accompanied by the corresponding
emotions and sensations (ibid). The presence and functioning of these mirror
neurons thus seems to play a crucial role not only for the human preference
to learn through imitation, but also in successful communication of the mature human being: “Without the resonance which has its base in the mirror
neurons language would not be that fast, highly effective means to transfer
our own ideas into another person” (ibid, p. 76, my translation from German).
The earliest forms of imitations in speech are acoustic models of animals
or objects (Krüger, 2007). The author refers to onomatopoetic words, imitating the sound of the object or animal.
Language development between twelve and eighteen months is dominated
by lexical units which are highly unstable, appear in variations and have no
systematic order of their single segments. The realization of a phoneme can
vary from word to word or even within one word, and there is a tendency for
overgeneralization of certain phonemes (Yavas, 1998, describes a child who
used both the syllable [da] as well as [ba] to name his daddy). The period is
characterized by simple syllable structures with either consonant-vowel - or
consonant-vowel-consonant-vowel – sequences, e.g., [da], [ga], [mama],
[tata]. In his/her first words the child predominantly uses phonemes which
already frequently were present during the second babbling period, such as
nasals or frontal plosives (Hacker, 1999). A distinct feature of this period are
the strategies of selection versus avoidance, that is, the child selects words
which are appropriate regarding his/her perceptive and motor abilities and
23
avoids words with difficult phonemes or complex syllable structures (Yavas,
1998). Children between twelve and eighteen months are applying direct
verbal repetitions, later followed by delayed and finally internalized repetition: the word is creating an image in the child’s mind and is understood in
its meaning (Tomasello, 2007; Tomasello & Rakoczy, 2003; Zollinger,
1995).
Due to the restricted vocabulary which children at this age are able to express verbally, one word utterances frequently serve different syntactical
purposes; e.g., the child might utter “car” and really mean “when are we
going for a ride in the car?”. A study of Banajee, Dicarlo and Stricklin
(2003), which aimed for determining core vocabulary of toddlers with typical development used across different activities, revealed the types of words
used to express different parts of syntactic, semantic and pragmatic functions. While verbs, demonstratives and pronouns were used by all children, a
lack of nouns was noted in the common words used across different activities. The toddlers who participated in Banajee et al.’s study were growing up
in an English speaking environment and were followed during day care activities. In how far these findings are applicable to children growing up in a
different linguistic environment remains a question for further research.
When an Austrian infant, growing up in a German speaking environment,
was followed during the first two years of language acquisition, his first
verbal expressions were dominated by nouns (Pickl, 2005). The dominance
of nouns in early lexical development is confirmed by Marschik, H. and C.
Einspieler and Vollmann (2005), who used a version of the MacArthur
Communicative Development Inventories (MCDI), adapted for Austrian
German, in their study of first word acquisition of 29 Austrian children.
Development of semantic organization skills
Research suggests that children are structuring semantic concepts in taxonomic or schematic / thematic organizations (e.g., Krackow & Gordon,
1998; Lucariello, Kyratzis & Nelson, 1992). According to Lucariello at al.
(1992), taxonomic organization refers to a hierarchical system of categories
which are related to one another via class inclusion. Within a taxonomy, a
superordinate term, e.g., “food”, contains subordinate concepts, e.g., “apple”
or “pizza”. Schematic organizations, on the other hand, include items which
are related to scenes or event scripts which are based on “functional organizing principles” (Nelson, 1996, p. 231). When children are using schematic
organization, vocabulary items are bundled together in a scene, e.g., meal
time, “because they have a function in that scene and they are related to each
other as parts within a functional whole.” (ibid).
Studies (e.g., Poulin-Dubois, Graham & Sippola, 1995) indicate a developmental sequence to the semantic organization of concrete concepts. Thus
24
children with typical development between age four and five years are using
a schematic organizational system to organize concrete vocabulary concepts,
and between age six and seven years shift to the use of categorical / taxonomic organizational structures. Toolan (1996) provides an example: “The
word ´chair´ has innumerable meanings in innumerable contexts, but, when
asked its meaning, we are likely to say first ´a piece of furniture to sit on´, or
words to that effect.“ (p. 17). Thus memorizing the meanings we have
learned to associate with words is crucial for the development of semantic
organization skills, but semantic organization is not based on memory alone.
“While memory is foundational to language use, it operates neither mechanically nor alone: attention must also be given to the role of imagination in
language development and the establishment of meanings.” (ibid).
Nelson (1996) stresses the necessity of exposing language learners to the
various ways in which linguistic concepts are organized in order to learn
“the compositional structure of categories” (ibid, p. 250), as the organization
of semantic concepts by children with typical development is a developmental process, driven by language experience and adult language instruction.
According to Vygotskij (1986), instructions should be oriented according to
the child’s strengths, but also should help utilize what Vygotskij (ibid) calls
the zone of proximal development (the discrepancy between what the child
can do with and without assistance) to help the child acquire the next level of
competence.
Development of receptive language abilities
Language understanding is an internal, usually invisible process which, in
the child with typical development, happens rapidly (Mathieu, 2007). Successful as well as impaired understanding of language cannot be observed
directly in the way as correct versus impaired speech shows itself to the
communication partners. What can be observed are the actions or expressions which can or cannot be expected based on the spoken input (Zollinger,
1995). Thus describing receptive language abilities means to describe the
reactions to a verbal input to conclude how that input was processed. These
reactions, however, are not constant, but change with and through the social,
communicative and cognitive development (ibid).
According to Friederici (2003, p. 44), “a mature speech recognition system only needs 600 msec to recognize a word.” Development of receptive
language abilities starts in early infancy: During the sucking process the
infant with typical development frequently interrupts the drinking to look
into his/her mother’s face to establish eye contact and communication. This
dialogue is the start of the development of communicative abilities (Motsch,
1994; Watt, Wetherby & Shumway, 2006). The development of language
understanding has its base in a situation and action bound understanding,
25
starting with the interaction between mother and child, called primary circular reaction by Piaget (Piaget & Inhelder, 1951/1975), followed by the secondary circular reaction or triangulation – both the child and the caregiver
direct their attention to an object of shared interest, and both are aware of the
other person perceiving that object and showing interest in it as well (Clibbens & Powell, 2003; Yoder & Munson, 1995). Through referential eye contact the child discovers that his/her actions and utterances have a meaning
and will link spoken language with specific contents. The child with typical
development gradually will learn to understand complex and abstract language, independent of a certain situation (Gebhard, 2007a; Watt, Wetherby
& Shumway, 2006). “Understanding moves between emotional, cognitive,
symbolic and social-communicative processes and establishes a relationship
among these processes. Via understanding the world of objects is linked with
the world of persons, leading to the desire for communication.” (Mathieu,
2007, p. 6, my translation from German).
Levels of receptive language development
At the age of one month the child with typical development recognizes
his/her native language and has developed a sensitivity for rhythm and dynamic aspects of the caregivers’ speech. Between one and five months the
child recognizes patterns of intonation and displays a preference for babytalk (slightly higher pitch than in ordinary adult conversation). (E.g., Trevarthen, 2001).
Between five and nine months the child develops reception within different modalities (e.g., linking a certain sound to a visual stimulus) and, based
on referential eye contact, shows first comprehension of words: The child
has discovered that certain words always are expressed in connection with
certain persons, objects, situations or actions (Zollinger, 1995).
Between nine and twelve months the child builds a phonological structure, recognizes and comprehends single words and is able to point to well
known persons and objects when asked where that person or object is.
Mathieu (2007, p. 7) speaks of the “first lexical language understanding”. In
the second year of life the child tries to put a meaning into the utterances of
his/her caregivers and looks for persons, objects and actions to link those
with the discovered meanings. In functional play the child is establishing
his/her situation based language understanding and is expanding that understanding in quality and quantity. However, during that period action, word
and meaning are interrelated; the word is seen as part of the action instead as
a symbol to represent that action (Watt, Wetherby & Shumway, 2006;
Zollinger, 1995). By acting out a verbal utterance the child makes the meaning of words tangible, visible and something that can be experienced, thus
creating images accompanying the words.
26
Between 12 and 16 months the child comprehends 100-150 words, as well
as simple sentences, phrases and commands. The 16-20 months old child
comprehends around 200 words and is establishing word categories. At this
age the child with typical development is able to separate object and action
as well as to separate words from actions or objects (e.g., the word “spoon”
is not necessarily connected with the action of eating, but is also understood
in other connections). Around the age of 18 months the child with typical
development shows first signs of inner representation (persons and objects
named by a communication partner need not necessarily be in the child’s
immediate environment to be understood) and uses mental combinations
(Chapman & Miller, 1980; Piaget & Inhelder, 1951/1975). The child is now
able to apply symbolic thinking which allows the child to go beyond the here
and now. The child with typical development uses action words, requests
information and uses first two-words-combinations. Regarding the relationships between words and syntax comprehension the child’s language understanding is still limited.
Between 20 and 24 months the child starts to understand relations and order among words. The child between 24 and 30 months is able to link separate symbolic actions to a linear sequel, with the end of one action eliciting
the idea of the next one; the child is beginning to comprehend complex utterances (Deplazes, 2006). While he/she is engaged in an action the child no
longer is concentrated only in the action itself, but in how that action might
be used to create or change something; the child becomes aware of the consequences of his/her actions.
The period between 18 and 36 months is of high importance for the development of language and play, both being closely connected (Mathieu,
2007). Two and three years old children predominantly are playing for themselves, alone or next to another child; they are acting out their own ideas and
are not yet ready to dismiss them for the sake of playing together with someone else. With increasing age language becomes separated from the here and
now, just as play becomes separated from present persons or objects and
moves to the level of thinking and pretending, allowing the child to play in a
“let’s pretend”-mode. Role play becomes important, and this type of play
needs language for common planning and exchanging of ideas.
The development of word- and sentence comprehension is accompanied
by an increased understanding of longer utterances and short stories. Depending on his/her world knowledge the four years old child is able to follow
and comprehend typical children stories, to establish connections and to put
them in correct temporal and spatial order (Mathieu, 1998; Weigel, Lowman
& Martin, 2007). Before age five children, independent of their native language, usually are applying the actor first – strategy (Gebhard, 2007b), e.g.,
“the mother feeds the girl”. At age five the child is expected to interpret linguistic information in a differentiated manner, e.g., comprehending reversible passive sentences like: “the mother is fed by the girl”. A child who at this
27
age still uses the actor first - strategy will interpret the sentence according to
his/her world knowledge, and, when asked to act out that sentence with
dolls, will let the mother feed the girl, indicating a problem in language
comprehension.
Six years old children with typical development usually have an advanced
understanding of spoken language. Their passive vocabulary enables them to
follow everyday conversations, they are able to comprehend sentence components independent of their position within the sentence, and they have
developed strategies to decipher even complex syntactic patterns such as
passive constructions (Gebhard, 2007b; Weigel, Lowman & Martin, 2007).
However, even nine years old children with typical development display
difficulties to correctly interpret object-relative clauses (e.g., “the cat which
the dog chases bites the mouse”); most children at this age will interpret such
a sentence as a subject-relative clause (“the cat which chases the dog …”).
So the development of language understanding is an ongoing process which
is still not completed when the child has finished his first decade of life
(Gebhard, 2007a).
Development of early communicative abilities
Although the ability to communicate is not innate, all human beings are prepared to learn to communicate and to interact in a social context (Brodin,
1991, 2005; Wilder & Granlund, 2003). However, while nonhuman species
are able to effectively communicate with all other members of their species,
human beings only can communicate effectively with other humans who
have grown up in the same linguistic environment. This means that, unlike
other animal species, human beings are not born with a specific set of communicative behaviors; young children need to learn the set of linguistic conventions which are used in their environment (Tomasello, 2003). Motsch
(1994) defines communicative abilities as the fundament for language,
which in the course of development is filled with linguistic elements.
Pre-linguistic communication
In pre-linguistic communication all observable behaviors, including muscle
tone, dynamics of movements, and autonomous behavioral expressions such
as breathing patterns or color, temperature and moisture of the skin are to be
regarded as potential means for communication. Even before birth the child
is able to distinguish the prosodic patterns of his/her mother’s native language from the patterns of another language by showing increased awareness for the language used by his/her mother (Papousek, 1996; Trevarthen,
2001).
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While observing the special rhythmical and melodic talent of new or premature born babies for the means of communication Trevarthen (ibid) noticed the inborn desire of these babies to communicate. He found a precise
synchronization between caregiver and child (sound – pause to wait for a
response – next sound) and thus speaks of the musicality in the parent-childinteraction. Trevarthen’s findings show that the ability for the rhythmical
aspects in inter-human communication is an inborn talent, while the rules for
the communicative patterns within a given society need to be acquired in a
years long process.
Rowland (1996) defines seven levels of communicative development;
during his/her first year of life the child with typical development progresses
from level I to level V:
In level I the child displays pre-intentional behavior. The child is unable to
distinguish between his/her own actions and emotions and the ones of his/her
caregiver. Via identification with the child the caregiver, mostly the mother,
assigns meaning to the child’s behaviors, e.g., interpreting the infant’s cry as
a request to be held or fed. The caregiver’s interpretation assigns a purpose
to the child’s actions and makes his/her cry communicative. According to
Rowland (ibid) the association of a meaning with the child’s actions shapes
the later intentional behavior. During this period the child begins learning
basic communicative functions (e.g., early dialogue behavior by establishing
eye contact with the mother while being fed) and at the same time relies
heavily on his/her caregivers to interpret his/her communicative efforts. So it
is not the intention of the child, but rather the caregiver’s sensitivity to the
message that leads to successful communication at this stage. This has been
confirmed by other researchers as well (e.g., Acebo & Thoman, 1995; Papousek, 1996). “Communicative exchange between the infant and his/her
parents will only be successful if the infant is interested and ready to receive
the input and if the parents adjust their behavior to the infant’s perceptual
and cognitive abilities, understand the messages of his/her body language
and respond accordingly (Papousek, ibid, p.35, my translation from German).
Commonly, the child at the stage of pre-intentional communication, also
called perlocutionary stage (Binger, 2001; Liszkowski, 2005), neither uses
nor understands words, nor does he/she communicate intentionally.
In level II, the level of purposeful acting (Rowland, 1996), the child’s actions are intentional, e.g., touching or bringing close an object of interest,
while his/her communication is not (Nelson, 1996).
Intentional communication
In level III emerges intentional communication; the child communicates to
influence another person’s behavior. Rowland (ibid) calls communication at
this stage pre-symbolic, non-conventional communication. Liszkowski
29
(2005) speaks of the illocutionary stage when communication is intentional,
but not yet symbolic. Some researchers argue that the child is communicating intentionally much earlier (e.g., Berglund, 1999), but according to most
researchers (e.g., Bruner, 1987; Lage, 2006; Liszkowski, 2005; Rowland,
1996; Siegel & Cress, 2002) in the child with typical development communication becomes intentional around the age of seven to eight months. At this
level crying no longer is a reflexive response to physical needs; the child has
learned that he/she can manipulate his/her environment by different communicative behaviors (Iacono, Carter & Hook, 1998). According to Rowland
(ibid), a child can only demonstrate intentional behavior when he/she understands that he/she can have an impact on objects, while intentional communication will only be demonstrated by a child who has learned that he/she
can have an impact on other persons. Siegel and Cress (ibid) list a variety of
intentional communicative behaviors such as intensive gazing at a person to
gain his/her attention, ongoing signaling till either a goal is reached or its
impossibility has become obvious, stopping a signal as soon as the desired
goal is accomplished, mimics (smiling versus frowning), changing a signal
(e.g., intensified screaming if the child does not get the desired attention),
alternating gaze between a person and the desired object, non symbolic messages (e.g., child lifting up an object to show it), a signal becoming a ritual in
a specific context (e.g., a certain gesture when an action is finished), or signs
of expectation immediately before an action (e.g., tensing the body when
expecting to be tickled).
According to Bruner (1987), these signals serve three main purposes: Behavior regulation (e.g., child is protesting loudly when he/she is put to bed),
social interaction (e.g., child shows his/her desire to be picked up by reaching towards the parent) and joint attention or triangulation (e.g., child looks
back and forth between an object of interest and his/her caregiver). The actions which are initiated by the child are commented, interpreted and repeated in a linguistically appropriate mode by the caregivers; thus the child’s
actions are getting integrated in a collective cultural context (ibid).
The ability to jointly steer attention to an object or action emerges around
the age of nine months (Lage, 2006; Tomasello, 1999). It is regarded as an
important step in cognitive, social and emotional development and by many
researchers seen as the base for communicative competence (e.g., Bruner,
1987; Katz-Bernstein, 1996; Light, 1989; Zollinger, 1995). Joint attention,
emerging before the child’s first words, happens when two persons share the
same experience and at the same time are aware that the other one might be
interested in that object or action as well. According to Tomasello (1999, p.
64) joint attention is characterized by “joint engagement, gaze following,
point following, imitation of instrumental acts, imitation of arbitrary acts,
reaction to social obstacles, use of imperative gestures and use of declarative
gestures (including proximal such as ´show´ and distal such as ´point´).”
30
At this stage the child has progressed from the direct line between his/her
own person and the caregiver, Piaget’s primary circular reaction (Piaget &
Inhelder, 1951/1975) to being part of a triangle (Zollinger, 1995): child –
object or other person – caregiver, Piaget’s secondary circular reaction (Piaget & Inhelder, ibid). According to Zollinger (ibid) these situations of referential eye contact create the base for three prerequisites for the development
of language comprehension: The child is interested in the object or action,
the child is interested in the reactions and comments of others, and the child
is able to combine and integrate both foci of interest.
In level IV, called the stage of pre-symbolic conventional communication
by Rowland (1996), communication progresses from idiosyncratic expressions, understood only by those who know the child well, to more conventional expressions, e.g., holding up the palm to request an object. At that
stage, called the illocutionary stage by Liszkowski (2005), communication is
intentional, but not yet symbolic - the child is unaware of the representative
function of words, signs or pictures, and will manipulate a picture like an
object, not recognizing its representative meaning (DeLoache & Burns,
1994).
Between eight and ten months the child with typical development uses
first gestures, e.g., pointing at someone or something or lifting the arms to
indicate the desire to be picked up (Papousek, 1998; Sheehan, Namy &
Mills, 2007). These gestures which are frequently used by children with
typical development before they start using verbal speech are so called deictic gestures, used to lead another person to a certain place, to show or to
point to something. Gestures are not yet used in a symbolic mode to represent persons, objects, places or actions (Schick, 2002). Hearing as well as
hearing impaired children use pointing between age 12 and 24 months to
gain attention. At a later stage, however, with the hearing impaired children
pointing in addition to gaining attention also gets a linguistic function; it is
then in a way used as part of the grammar and in much higher frequency
than it is the case with hearing infants (ibid).
Symbolic communication
In level V according to Rowland (ibid) the child has reached the stage of
symbolic communication. He/she understands that persons and objects have
names and can be represented either in spoken words, pictures or referential
objects. Human consciousness of the self makes it possible to reflect upon
ourselves as objects as well as subjects – “I” and “me” (Tomasello & Rakoczy, 2003; Zollinger, 1995). According to Tomasello (2003), the symbolic
dimension is the essence of human language and is based on the ability of
humans to comprehend intentions.
To develop this capacity human beings need a stimulating environment,
affecting sender and receiver in the same way. E.g., parents are inclined to
31
imitate the child’s expressions; through this imitating process objects in the
surroundings become bearers of meaning, they are connected to symbols.
The most important symbols are the words in the first language learned by
the child. Because of its symbolic nature the active human creates and recreates the world he/she is acting in. In the course of their language acquisition
children name, categorize, perceive, etc., create abstractions and new ideas
through symbols (Zollinger, ibid). The internalization of actions and their
internal representations allow the development of increasing independence
of spatial and temporal conditions. A growing number of actions is getting
structured and bundled in symbols, which can be expressed by visual, acoustic, or later linguistic means (Katz-Bernstein, 1996; Sheehan, Namy & Mills,
2007).
Until the end of the first year of life the child is engaged with either the
world of persons or the world of objects, but not yet able to connect both:
E.g., the child who is exploring an object will let it go in the moment when
he/she is establishing eye contact with the mother or caregiver and both are
starting a dialogue. Around the age of twelve months the child with typical
development starts using first words or communicative gestures, accompanied by stereotyped vocalizations. At this stage actual word understanding
can be observed, given the child can relate to the mentioned person or object.
One year old children with typical development have developed an understanding of persons as intentional agents, which according to Tomasello and
Rakoczy (2003) is a prerequisite for the skills of cultural learning and shared
intentionality. Tomasello (2007, p. 8) states that “although primates have
evolved complex cognitive skills and strategies for competing with others in
their social group, only humans have developed complex cognitive skills and
motivations for collaborating with one another in joint endeavors.”
The child has internalized the rules for dialogic communication (Vygotskij, 1986) and has learned to express his/her intentions in a way that they
are understood by others. According to Vygotskij (ibid), the ability to comment and share actions and events, independent of the concrete action itself,
is the base for the internal dialogue, which is part of an autonomous personality. Through the physical autonomy and independence which the child
reaches around the end of his/her first year (crawling and later walking) the
child enters the phase of separation. The child now not only has the possibility to independently explore physical closeness versus distance, he/she also
is able to create communicative closeness or distance by calling for “mama”
or saying and/or waving “bye bye”.
At that stage the child displays the earliest form of asking questions: the
child points to a person or an object and looks at the adult, expecting to hear
the name of that person or object. Asking questions is double bound with
language comprehension: A certain linguistic understanding is a prerequisite
– the child needs to know that things in the world have names, on the other
32
hand can language only expand if the child is asking questions (Mathieu,
2007).
Around the same time the child discovers the power of the word “no”.
According to Zollinger (1995), the experiences the child makes in connection with that word support the process of separation: On one hand the child
discovers that others may have ideas and intentions different from his/her
own, explicitly formulated via the word “no”. On the other hand within a
short time the child wants to discover the power of that word for him/herself
as well, thus getting the opportunity to resist to the expectations of others, to
confront them with his/her own wants and wishes and to explore his/her own
being as a person of itself. Zollinger (ibid) defines the word “no” as the first
judgment in the sense of the German word “Urteil”, its literal meaning being
“Ur-Teil” (first or original part). By expressing a “no” the child clearly separates him/herself from others and becomes aware of his/her own personality.
This period of individuation reaches its peak towards the end of the second year of life (Weigel, Lowman & Martin, 2007). The child has developed
a picture of his/her personality and abilities and discovered the possibility to
influence or change the behavior of others. At the same time he/she has discovered that others have abilities which he/she him/herself does not yet have
and has learned to ask for help, question and listen to what they are telling
about the world. The questions “what”, “where” and “why” emerge at the
stage when the child has acquired enough knowledge about the world and
the words in his/her environment to question that knowledge, confirm and
expand it. As language comprehension is a prerequisite for the ability to ask
questions, Zollinger (ibid) sees the question as a form of integrating communicative and symbolic competencies. The continuous repetition of questions,
first in the form of pointing, later by repeatedly asking what-, where, and
finally why-questions, however, leads beyond this integration as it opens up
a new world for the child, confirming the central meaning of the question as
an expression for the child’s interest in the world.
“Language has its roots in actions or possible actions, including the sensory experiences of its biological actors. … Language can only develop in
the child where interpersonal relations create the terrain for action- and interaction-experiences.” (Bauer, 2005, p. 81, my translation from German).
33
Communication challenges in children with
severe and multiple disabilities
Children have an inborn desire to understand the world around them, an
inborn striving for independence, for gaining a sense of the self and a desire
to connect socially with others (Burkhart, 2002). While severe cognitive and
physical challenges present limits to the child’s ability to understand the
world in its complexity and to pursue striving for independence, most children have preserved their striving to socially bond with others, even when at
first glance they appear rather withdrawn or rejecting. As soon as two persons are getting involved with each other emotion comes into place, a crucial
prerequisite in the process of learning (Clibbens & Powell, 2003; Yoder &
Munson, 1995).
A facilitating factor for learning in children with profound disabilities is
to interact with human beings rather than with specially designed toys or
objects. Children need actual persons to relate to, to help them experience
their own self, experience pleasant as well as less enjoyable actions, and,
maybe most important, to help them find actions they can do themselves. It
is, however, difficult to find tasks that challenge these children just at the
right level (Brodin, 1991; Burkhart, 2002; Kristen, 1994). Something too
easy does not stimulate their natural curiosity, and something too difficult
does not motivate them to attempt the task.
Burkhart (ibid) suggests providing the child with lots of repetitions of a
certain action, though with moderate differences over time. Something new
is likely to catch our attention. So if something within a routine suddenly is
new or somehow different, this might be a good moment for learning. (Nelson, 1996, calls this phenomenon rare event learning). Nothing is as powerful and motivating as the feeling of success when we have accomplished
something or figured something out on our own (Burkhart, 2002). Children
with severe and multiple disabilities unlike children with typical development frequently are not able to encounter new tasks and master new situations in the course of their daily living, so it is the task of the adult to provide
the child with novelties. To make another person aware of such a novelty is
the purpose of communication (von Tetzchner, 2005).
Children with severe and multiple challenges learn best in their everyday
environment, engaging in actions which are typical for their daily routines,
and together with persons they are familiar with (Brodin, 1991). Learning
34
takes place most effectively in everyday life. When learning is presented in
an isolated situation, the child has less background knowledge to associate
with and fewer opportunities to practice than when the new task is presented
in the child’s natural environment. Whatever attracts the child’s attention can
facilitate learning and serve as a base for communication (Clibbens & Powell, 2003). Being attentive usually starts with directing the eye gaze to the
source of interest. Around the age of about nine months the child with typical development is able to follow the direction of a finger pointing at someone or something and gradually the eye gaze of another person (DeLoache &
Burns, 1994). Many children with severe and multiple disabilities have deficits in one or more areas of sensory processing, and by not being able to
move their bodies into the optimal position to observe or listen these deficits
are getting multiplied. Instead of looking at the source of interest or turning
the head towards it children with visual impairments might actually freeze
trying to avoid making any sound other than the source of interest, or turn
away, which is likely to be wrongly interpreted as the child showing no interest. Actually he/she might just be trying to hear more closely and intensely (Lee & MacWilliam, 2002).
Also children with impaired mobility are frequently experiencing problems with keeping their eye gaze constant with the person or object of shared
interest which consequently may lead to an impaired understanding of the
use of gaze, gestures and body language (Björck-Åkesson, Brodin & Fälth,
1997). Processing information can be made more effective for children with
severe and multiple disabilities when that information is presented in a variety of modalities, e.g., including sight, sound, touch and movement
(Burkhart, 2002).
Assessing communication in children with severe and
multiple disabilities
Children with severe and multiple disabilities usually differ in their development of communicative abilities from children with typical development.
Cognitive impairments frequently lead to receptive language impairments,
motor impairments hinder the development of oral language (Batshaw 1997;
Beukelman & Mirenda, 1998). With increasing age the discrepancies in
communicative abilities and consequently the amount of participation in
social life between the child with disabilities and the child with typical development are increasing.
These discrepancies often can be minimized and participation maximized
by using individual signs or gestures, simple technology or topic orientated
communication boards. However, if a child is to use his/her communication
35
aid effectively, and if the child’s social environment is expected to adjust to
and use the new mode, it is crucial to learn about the developmental level,
the physical, emotional and sensory situation and the social environment of
that child. Moreover, we live in a diagnostic society, which means that some
sort of assessment often is a prerequisite before a child is eligible to receive
individual, social and financial support (Brodin, 1999). This might not be
true everywhere in the world, but is a fact in most Western societies.
Challenges in assessment are that although children may be functioning
at a lower developmental level, their experiences may be equivalent to their
chronological age (Brodin, 1991). On the other hand, if these children are
compared to peers with typical development, environmental consequences
resulting from the disability, such as different reactions from the part of the
environment to the child’s behaviors which do not correspond to typical
development, are not considered.
When the communicative level is assessed the outcome does not necessarily correspond to the child’s actual communicative competence, which might
be low in the test situation, but actually quite well developed in the child’s
natural environment (ibid). Light (1989) defines communicative competence
for persons using AAC as the ability to functionally communicate within the
natural environment and to adequately meet daily communication needs.
Statements concerning the child’s communicative abilities (e.g., Kristen,
1994; Lage, 1998; Lee and MacWilliam, 2002) provide a much deeper insight into the individual’s communicative status than his/her rank on a scale
of communicative development.
Changes in models
In the seventies and eighties of the last century Jean Piaget’s developmental
stages (Piaget & Inhelder, 1951/1975) were a widely used method for assessment, and finding ways to assess children with disabilities and complex
communication needs to find out at which stage they were functioning usually preceded every intervention. Simple technical communication aids were
rare and still quite expensive, so when professionals were thinking of AAC
they mostly had communication boards with pictures, symbols or letters in
mind (Vanderheiden, 2002; Zangari, Lloyd & Vicker, 1994). Consequently
the common belief at that time was that a potential user of a communication
system had to function at least at Piaget’s sensory motor stage five (e.g.,
Chapman & Miller, 1980), equaling the age between 12 and 18 months in a
child with typical development. Thus the model that was applied in the early
years of AAC was the so called model of candidacy:
Criteria among others were the child’s obvious desire to communicate, the
child’s ability to imitate actions, the child’s understanding of cause and effect and him/her having mastered object permanency. The assumption was
that only if a person had developed a so called inner language, he or she
36
would have the desire for an outlet for his/her thoughts. This belief led to a
great number of individuals simply having been left out from support.
Today the stages of development in the sense of Piaget are sometimes
questioned (Donaldson, 1993; Sommer, 1997). Piaget had based his theory
on the assumption that a child could manage the tasks related to a given
stage if he/she had the cognitive capacity that was expected at that stage,
ignoring, however, that the inability to master a certain task might be caused
by language deficits, as well as ignoring the role of language and environment in cognitive development. Today’s understanding of language and language acquisition involves a variety of modalities. Vygotskij (1986) stressed
the influence of social factors and education on the development of language
and cognition. Also, the language which a child is acquiring is used in special contexts of semantic and pragmatic communication (Bates & Dick,
2000; Slobin, 1997). Finally, studies have shown a correlation between the
development of gesture and linguistic and cognitive development (e.g.,
Eriksson & Berglund, 1999).
Taking into account the multi-modal influences on language development
Tomasello called his theory of language acquisition a usage-based model
and states that children’s linguistic abilities are closely linked with other
cognitive abilities (Tomasello, 2003).
Participation model
Rosenberg and Beukelman (1987) had developed the participation model
with the aim to highlight and decrease social and structural barriers for persons with disabilities through the concept of participation. The participation
model discriminates between barriers regarding opportunities and barriers
regarding access: The latter mostly refer to the immediate environment of
the person him-/herself, to the factors which impair a person to use his/her
full potential at a given point of time, while barriers of opportunity are
caused by certain structural frames.
From the perspective of the participation model the concept of a disability
is seen as a complex and dynamic phenomenon (ibid). This model not only
has become influential in AAC intervention, also the International Classification of Functioning, Disability and Health (ICF, 2001) has taken up the
concept of participation to replace the rather negative concept of the social
disadvantage (Arthanat, Nochajski & Stone, 2004).
Beukelman and Mirenda (1998) in their participation model for non
speaking individuals postulate that the only prerequisite to communicate is
to participate, independent of whether or not a certain developmental level
has been reached. The majority of intervention strategies are focusing on
fitting the individual into preexisting environmental patterns, usually with
poor results when it comes to individuals with severe and multiple disabilities. Granlund, Björck-Åkesson, Brodin and Olsson (1995) suggest to consider assessment and intervention in relation to the handicapping conse37
quences of a person’s disabilities on the interaction between the person and
his/her environment rather than focusing on the disability per se. Granlund et
al. (2002) name the three possible goals for intervention the “three Rs”, one
being remediation, aimed at changing the way the child with complex communication needs behaves towards the caregivers, one being redefinition,
aimed at changing the way the caregivers perceive and interpret the behavior
of the child, and the last one being reeducation (aimed at changing the way
the caregivers behave towards the child).
Beukelman and Mirenda (ibid) suggest that a non speaking child and
his/her peers are observed during daily routines and then single, but frequently occurring situations (e.g., morning circle, meal time, etc.) are picked
out. The goal is to gain a repertoire of situations were the amount of discrepancies in participation between the non speaking child and his/her speaking
peers can be analyzed. Frequently situations can be adapted so that the
amount of participation of the non speaking child will increase. Intervention
may include supplying the child with a communication aid which is adequate
for his/her communicative level and for the situation, sometimes also modification of peer and/or caregiver behavior. If people with disabilities are to
participate in social life, the environment needs adaptation (Brodin, 2000).
The most important difference between the model of candidacy and the
model of participation is that the latter shifts the focus from the AAC user,
whose abilities and disabilities can hardly be changed, to the social environment and to the elimination or decrease of barriers.
38
Aim of the study
The overall aim of this study is to increase the knowledge of the every day
life of families with children who are facing severe communication challenges. The aim of this dissertation is to gain better understanding of how
parents to children with severe and multiple disabilities and with no or limited verbal speech view their children’s communication and their communication aids.
The research questions are:
How do parents view their children’s communication?
What are the challenges for parents regarding their children’s limited communication?
What are the reasons for using versus not using communication aids?
What are the parents’ preferences for technical versus non technical communication aids?
Exploring the everyday life of parents whose children are using alternative
and augmentative communication may be a way to become more observant
concerning the challenges these parents are facing and what it means to live
with a child with complex communication needs.
39
Method
This study focuses on ten families whose children use one or more modes of
AAC. For the interviews with the parents I used an interview guide (Appendix 2). Conducting qualitative research interviews is closely linked with both
the phenomenological and the hermeneutic tradition, but also with research
based on case studies. My study, however, neither is phenomenological nor
hermeneutical in the formal sense, but inspired by those research traditions.
Analyzing the subjective descriptions is a way to reveal the meaning or essence of the phenomena, in this case parental experiences with their non
speaking children and the use of communication aids. In order to gain a better understanding of the situation of parents of non speaking children we
have to make explicit how parents experience and relate to intervention regarding their children’s communication and to the aids and services they are
being given.
According to Schostak (2006, p. 10) “the interview can be described in
terms of individuals directing their attention towards each other with the
purpose of opening up the possibility of gaining an insight into the experiences, concerns, interests, beliefs, values, knowledge and ways of seeing,
thinking and acting of the other.” “An interview is literally an inter view, an
inter change of views between two persons conversing about a common
theme.” (Kvale, 1996, p. 44). Kvale (ibid) differentiates between a philosophical conversation, where truth is sought via an argumentative discourse,
the therapeutic interview, aimed to facilitate changes and self understanding
in the interviewee’s personality, and the research interview, aimed to gain
knowledge of the interviewee’s world through questioning. Both the therapeutic as well as the research interview seek for increased understanding, but
while in a therapeutic interview the emphasis is on personal change, in a
research interview the emphasis is on intellectual understanding.
What makes a research interview different from daily life conversations is
that in a research interview the researcher defines the topic, controls the
situation, is aware of methods and question forms and attends critically to
what is said. There is a focus on the dynamics of interaction between the
interview partners. According to Kvale (ibid, p. 1), “the qualitative research
interview attempts to understand the world from the subjects’ point of view,
to unfold the meaning of peoples’ experiences and to uncover their lived
world prior to scientific explanations.” It is “a uniquely sensitive and power-
40
ful method for capturing the experiences and lived meanings of the subjects’
everyday world” (ibid, p. 70).
I will first provide a short description of the two philosophical traditions
of phenomenology and hermeneutics with the emphasis on similarities in
terminology. Then I will discuss Kvale’s (ibid) seven stages of investigation
and how they are interrelated with aspects of phenomenological research, as
well as the stages for analyzing the interviews as suggested by Giorgi
(1997). I will also briefly describe how the twelve aspects of investigation
using interviews as a research method as listed by Kvale (ibid) influenced
my own study.
The phenomenological approach
Phenomenology is a philosophical school of thought which can be used as
the base for qualitative research; the purpose of phenomenological research
is to describe phenomena as they are lived and experienced by individuals
(Merleau-Ponty, 1945/1995). Interviews led in a rather unstructured way,
only following an interview guide, are a means to provide valuable insight
into the life worlds (Husserl, 1913/1998) and experiences of individuals. For
research purposes this lived experience has to be fixed in texts, which then
later are analyzed (Lindseth & Norberg, 2004).
The term phenomenology is derived from the Greek words “phainomenon” (something that appears) and “logos” (word, science), but has changed
its meaning in the course of philosophical history. Phenomenology expresses
itself in a basic attitude of thinking, of looking upon the world as one who at
the same time is in the world. One who applies phenomenological thinking
tries to understand the world in all its different forms in its meaning and
essence. The aim of phenomenology is to go back to the things themselves,
to the manifestation of what presents itself to experience (Changeux & Ricoeur, 2000). “Phenomenological studies are a beginning; a questioning that
gathers continued conversations around complex issues. They call out to
human science researchers to respond in new ways by examining their dayto-day practices in a new light.” (Diekelmann in her preface to Dahlberg,
Drew & Nyström, 2001, p. 14). So the philosophical method of phenomenology has the goal to uncover the meaning of phenomena which are experienced by humans by analyzing subject descriptions. Analyzing the data reveals the inner meaning of the phenomenon’s essence. To accomplish the
goal of revealing an essence Giorgi (1989) suggests the following “tools”,
which I will be using in the analysis of my results.
Bracketing: The researcher holds back his/her theoretical and experimental knowledge, preconceptions or expectations. In other words, he/she puts
scientific pre-knowledge about a phenomenon within parenthesis to avoid
41
influence of that knowledge on the description of the phenomenon. Schostak
(2006) points out the similarity of the phenomenological strategy of bracketing with the aim in studies based on interviews of the researcher taking no
position either for or against the truth or existence of a phenomenon.
Analyzing through intuition and imagination: The researcher openly examines the phenomenon without being possessed by it. During analysis, the
researcher moves from understanding the text as a whole to understanding its
single statements and phrases, until the phenomenon is illuminated from a
whole new area.
Describing: The researcher discovers, describes and discusses the essence
of the investigated phenomenon.
Using phenomenological methodology often includes an interpretative
stage which is based on the hermeneutical tradition. While the emphasis of
phenomenology is on transcendence and pure description, the emphasis of
hermeneutics is on pre-understanding and interpretation, with the purpose to
understand and describe being the essential focus. Hermeneutics as an important part of human science research contributes to the perspective of the
human subject as such by showing us how knowledge can increase through
describing, interpreting and understanding individual experiences (Dahlberg,
Drew & Nyström, 2001). Hermeneutics is the oldest tradition of qualitative
research methods. The hermeneutic approach derives from the interpretive
method that was first applied to religious texts (exegesis), classical literary
texts (philology) and legal texts (jurisprudence); it stresses the plurality of
interpretations by “reading human experience” (Changeux & Ricoeur, 2000,
p. 5). Thus hermeneutics can be called the philosophy of understanding
gained through interpretation.
Stages of investigation
When designing a study it is important to consider the steps and stages; for
this study I have used Kvale’s structure (1996).
Stage 1 – thematizing
In this stage the researcher formulates the purpose of the investigation and
describes the concept of the topic he/she wants to investigate. Parts of this
stage are also answers to the three questions “what” (involving acquisition of
pre-knowledge on the topic of investigation), “why” (involving the formulation of a clear purpose for the interview) and “how” (involving familiarity
with different interview techniques as well as ways to analyze, verify and
report the findings once the interview is completed).
42
The aim of this study, as mentioned previously, is to find out how parents
to children with severe and multiple disabilities and complex communication
needs view their children’s communication and their communication aids.
The underlying reason for the study is my observation over more than 25
years of practical work in the field of AAC that while most parents appreciate technical communication aids, these aids tend to be used rarely in the
family environment.
Stage 2 – designing
In this stage the design of the study is planned in a way to obtain as much of
the intended knowledge as possible. Qualitative research interviews, based
on open ended questions which allow elaborated answers and additional
questions where applicable, are used to explore how parents view their children’s communication, their communication aids and their usefulness in
daily life.
The stage of designing also involves considering the ethical implications
of the study. For this study before the actual interviews the potential interviewees are given short descriptions about the purpose of the study and how
the interviews will be conducted (recorded and later transcribed).
Stage 3 - interviewing
This stage involves conducting the interviews based on an interview guide,
regarding the interpersonal aspects of the interview situation.
The interview questions for this study (see Appendix 2) are covering aspects
related to the communication between parents and child, the child’s communication aid, the use of the communication aid and the support parents get
from society. The part that deals with communication between parents and
child includes issues of personal experiences, differences among family
members regarding the experienced challenges, and form and content of the
child’s communication. The part regarding the child’s communication aid
includes issues of form of the communication aid, vocabulary selection, decision making process and financial support or barriers. In the part regarding
the use of the communication aid parents are asked to identify situations
when the child seems to benefit more from the use of the communication aid
than in others and to describe the child’s use of the aid in his/her communication with different persons and peers.
The time for the interviews will depend on how elaborately the questions
are answered. Time and place for the interviews will be decided by the interviewees, as well as whether the child’s mother or father or both parents will
be present for the interview.
43
In the following I will briefly present how I used Kvale’s (1996) twelve aspects of qualitative research interviews in the intended design of my study.
First aspect – life world: “The topic of qualitative interviews is the everyday lived world of the interviewee and his or her relation to it.” (Kvale, ibid,
p. 30). The strong relation to phenomenology appears, which as a life world
epistemology focuses on the relationship between the subject and the object
(Dahlberg & Dahlberg, 2003).
The design of the interview guide, which is open to further questions, depending on the interviewees’ statements, aims for gaining insight in the everyday life or life world of parents with their children in need of AAC in all
its multiplicity and ambiguity.
Second aspect – meaning: “The interview seeks to interpret the meaning of
central themes in the life world of the subjects. The interviewer registers and
interprets the meaning of what is said as well as how it is said.” (Kvale, ibid,
p. 30).
The interviewer’s main task is to understand the meaning of what he/she
is being told by the interviewee (Giorgi, 1985). However, the way to understanding does not follow paths which are known in advance and is an ongoing process with no clear endpoints (Todres, 2004). The quality of such a
conversation is one of flow rather than conclusiveness, there is always the
potential and possibility for new meanings to arise, there is no true or false.
Active listening with the goal to understand is an intentional act. Husserl
(1913/1998) states that there always is an intentional relationship with the
things belonging to our everyday lives. “When we are, we are intentional”
(Dahlberg, Drew & Nyström, 2001, p. 55).
The context of my interviewing is intentional in the sense that the focus of
the interviews is clearly directed towards the daily life of the interviewees –
the parents.
Third aspect – being qualitative: “The interview seeks qualitative knowledge expressed in normal language, it does not aim at quantification.”
(Kvale, ibid, p. 30). “The medium of a discourse is language, which is neither objective or universal, nor subjective or individual, but intersubjective.”
(ibid, p. 66). Language is central in interview research as it is both the tool
for interviewing as well as the object of textual interpretation in the form of
recordings and transcripts. “There is one particular cultural object which is
destined to play a crucial role in the perception of other people: language. In
the experience of dialogue a common ground is constituted between the
other person and myself: my thought and his are interwoven into a single
fabric.” (Merleau-Ponty, 1945/1995, p. 354).
The main focus in my study is on language and communication, and language is the tool used for the investigation.
44
Fourth aspect – being descriptive: “The interview attempts to obtain
open nuanced descriptions of different aspects of the subjects’ life worlds.”
(Kvale, ibid, p. 30).
My study and my choice of methodology aim for a description of the
manifold experiences of the parents.
Fifth aspect – specifity: “Descriptions of specific situations and action
sequences are elicited, not general opinions.” (Kvale, ibid, p. 30).
My intention is to reveal the parents’ descriptions of specific situations in
their life with children who are in need of AAC.
Sixth aspect – deliberate naivité: “The interviewer exhibits an openness
to new and unexpected phenomena, rather than having ready-made categories and schemes of interpretation.” (Kvale, ibid, p. 30).
Just as in hermeneutic studies the researcher must recognize prejudices or
pre-understandings and their possible influence upon the interpretations
(Nyström & Dahlberg, 2001).
Dahlberg, Drew and Nyström (2001) stress the attitude of openness when
confronted with new ideas to be able to see the otherness of the phenomenon
without presuppositions. “Openness is the capacity to be surprised and sensitive to the unpredictable.” (ibid, p. 22). For my study this attitude includes
the willingness to allow getting involved with the parents’ lives for the time
of the study and to be touched by their experiences.
Seventh aspect – being focused: “The interview is focused on particular
themes; it is neither strictly structured with standardized questions, nor entirely non-directive.” (Kvale, ibid, p. 30).
Unlike in an everyday conversation a research interview is no reciprocal
interaction between two communication partners. For this study it is me as
the interviewer who chooses the topic, introduces it to the interviewees and
controls the course of the interview by posing distinct questions in a certain
sequence – all with the aim to focus as much as possible on the phenomenon
I want to investigate. In the interview dialogues I aim for maintaining the
initiative and leading the interview. I am, however, expecting some answers
of interviewees leading to questions from my side that are not part of the
interview guide, und thus allowing statements to previously unexpected areas. “The decisive issue is then not whether to lead or not to lead, but where
the interview questions should lead, and whether they will lead in important
directions, producing new, trustworthy and interesting knowledge.” (Kvale,
ibid, p. 159).
45
Eighth aspect – ambiguity: “Interviewee statements can sometimes be
ambiguous, reflecting contradictions in the world the subject lives in.”
(Kvale, 1996, p. 30).
I am aware of the possibility of ambiguity in interviews and in family
situations where I perform my interviews.
Ninth aspect – change: “The process of being interviewed may produce
new insights and awareness, and the subject may in the course of the interview come to change his or her descriptions and meanings about a theme.”
(Kvale, ibid, p. 30).
The research interview aims for obtaining new knowledge about a phenomenon rather than instigating changes in the self-concepts or emotions of
the interviewees. It is not the aim of a research interview to lead to change in
the interviewee’s personality, which is an important difference to a therapeutic interview. Therapeutic interviews are not used in this study. I am, however, aware, that the interview situation and the need to focus on certain
issues may create new insights in interviewees.
Tenth aspect – sensitivity: “Different interviewers can produce different
statements on the same themes, depending on their sensitivity to and knowledge of the interview topic.” (Kvale, ibid, p. 30).
To be sensitive to the interviewee’s expressions and nuances in his/her
statements on a certain topic it is crucial that the interviewer has extensive
knowledge of that topic. The area of communicative impairments and AAC
has been in the center of my professional life for over two decades. This
knowledge and presuppositions no doubt influence not only the type of the
questions asked during the interview, but also the style of the interview. For
the purpose of research, however, it is my responsibility to be aware of these
presuppositions and not let them rule the interview in a non reflected way.
Eleventh aspect – interpersonal situation: “The knowledge obtained is
produced through the interpersonal interaction in the interview.” (Kvale,
ibid, p. 30).
“… the interview is a conversation in which the data arise in an interpersonal
relationship, co-authored and co-produced by interviewer and interviewee.”
(Kvale, ibid, p. 159). A research interview typically forms a triangle, with
one point being the researcher who sets and introduces the topic and controls
the course of the interview, the other point being the interviewee who serves
as informant about a certain phenomenon, and the third point being the
reader, who ideally gains new insights into a phenomenon by reading the
interpretations. For this study I agree with Todres (2004), who would like
the reader to meet a text with a responsive attitude, which may lead to the
arising of meanings that were unanticipated by both the informant and the
writer.
46
Twelfth aspect – positive experience: “A well carried out research interview can be a rare and enriching experience for the interviewee, who may
obtain new insights into his or her life situation.” (Kvale, ibid, p. 30).
When parents of children with severe and multiple disabilities and complex communication needs are asked to report about their children, their
report typically addresses medical doctors, therapists or pedagogues and
usually serves the purposes of assessment and evaluation. In the center of
these dialogues mostly are the child’s abilities and limitations in certain areas, and typically they take place in a limited time frame and at a location on
which the parents have no influence.
For the interviews for this study the parents decide where, when and for
how long to meet. Not only is someone listening to the parents for an extended time and in an intentional mode, they also may receive new insights
into aspects of daily life with their child and his/her communication issues
by reflecting on questions they might not have asked themselves. Thus the
interviews may be a positive and enriching experience for the parents who
are the interviewees for this study.
Stage 4 – transcribing
Preparing the interview material for analysis commonly includes the transcription from oral speech to written text. “Transcribing involves translating
from an oral language with its own set of rules, to a written language with
another set of rules.” (Kvale, ibid, p. 165). Studies reveal that when two different persons transcribe the same oral passage the transcriptions are likely
to differ in punctuation (e.g., where does a sentence end? When is silence
long enough to be marked as a pause?) and even in wording (e.g., due to bad
recording quality or when the interviewee is mumbling). Mishler (1991) and
Poland (1995) point out that if the emotional aspects of a conversation are
included (remarks like “nervous laughter”) the intersubjective reliability of
the transcriptions become even more questionable. However, according to
Kvale (ibid) there is no true, objective transformation from oral to written
mode. The researcher should rather aim for a transcription that serves his/her
research purposes.
The parents in the ten families who are participating in this study meet
with me for the time of the interviews. The interviews are recorded and transcribed verbatim. The transcriptions will contain also nonverbal utterances
(e.g., sighing, laughing), mimics (e.g., smiling, frowning) and the occurrence
of pauses, but no descriptions of body postures of the interviewees. The transcripts are then handed back to and approved by the interviewees. They are
given the possibility to add certain issues which after a period of reflection
appear important to them, but have not been mentioned during the interviews. With one exception, where the interviewee is a native English
47
speaker, the interviews are conducted and transcribed in German and then
translated into English. Interviewees who understand English also receive
the translated versions of the transcripts. The interpretation of the answers
which the interviewed parents are providing, however, is based on the language the parents are using during the interviews.
Stage 5 – analyzing
Kvale (ibid) suggests that based on the purpose and topic of the investigation
the researcher decides for a method to analyze the interview material. To
analyze today means to break something into parts or elements.
According to Giorgi (1985) an interview’s analysis should be begun by
getting a sense of the whole when reading the transcript to ensure that the
data not only are accurate but also are meaningful within their context. Instead of imposing a meaning from the outside upon a phenomenon the researcher waits until it shows its meaning to him/her. When all the meanings
of a text have been discovered and noted, the text is again treated as an entity, but now with a broader understanding.
For analyzing the interviews in this study I will follow Giorgi’s (1997)
four basic principles of analysis, those being reading the data, dividing the
data into parts or units, organizing and expressing the data into disciplinary
language and expressing the structure of the phenomenon, with the goal to
“find essences and their relationships” (Giorgi, ibid, p. 248). Other researchers prefer different terms to capture the meaning of “essence”, e.g., Todres
suggests using the terms “lived platform” and “bridge” (2004, p. 23). For
this study I prefer talking about “patterns” rather than “essences”.
Stage 6 – verifying
This stage also involves both reliability – referring to the consistency of results, and validity – concerned with whether the study investigates the intended research topic. “In modern social science the concepts of generalizability, reliability and validity have reached the status of a scientific holy trinity. They appear to belong to some abstract realm in a sanctuary of science
far removed from the interactions of the everyday world, and to be worshipped with respect by all true believers in science.” (Kvale, ibid, p. 229).
Regarding generalization - since the interviewee who serves as informant
is a representative of a group, through that person new knowledge can be
gained about the group’s needs.
Reliability refers to the consistency of research findings, validity to the
truth and correctness of a statement. According to Kvale (ibid, p. 238), “validity pertains to the degree that a method investigates what is intended to
investigate.”
48
The researcher attempts to verify possible interpretations of the interviewee’s answers in the course of the interview. This can be done by either
repeating statements of the interviewee or by asking for clarification. The
strategies that will actually be used for verification in this study are difficult
to be planned ahead and depend on the course of each interview. Validity
can be obtained by focusing on the topic of the interview – the child’s communication and his/her communication aids. The common patterns that result from analyzing the interviews across the different participants (as in a
cross-case analysis) will to some extent account for reliability.
Stage 7 – reporting
This stage involves communicating the findings of the study. Scientific criteria, ethical considerations as well as a form which is both readable and informative need to be taken into consideration. Ideally interviews are “selfcommunicating” (Kvale, ibid, p. 145) - once the recording device is turned
off the stories should stand for themselves without requiring extra descriptions and explanations. Each interview contains important knowledge as it is,
but still allows further interpretations.
Target group for the study
The interviewees for this study are parents of children with severe communication impairments. Eight interviewees are parents of children and adolescents whose problems in expressing themselves cannot be solved by simply
supplying them with an adequate communication aid, since there are other
issues related to language, cognition and perception involved in addition to
the children’s oral motor problems. These eight children thus belong to the
nonverbal or impressive language group.
Three interviewees (for one interview both parents served as interview
partners) are parents of teenaged girls who are currently using Minspeak™
based high tech communication aids following no- or low tech communication strategies - for one girl Picture Communication Symbols (PCS), for the
other girl Bliss-symbols. Both girls are competent users of their symbol
based communication systems and the word strategy their technical devices
require, but have not been able to acquire functional reading or writing
skills. These two youngsters thus fall into the non speaking or expressive
language group. My motivation to include these two families is based on the
interest to find out if and in which aspects the experiences and challenges
related to communicative issues of the parents of the non speaking children
belonging to the expressive language group differ from those of the parents
of the nonverbal children, the impressive language group.
49
The girl who progressed from a low tech communication aid with PCS to
using Minspeak™ with a high tech device is described in detail in Appendix
1, as she and her communication modes had been in the focus of a case study
(Pickl, 2005). The reason to include the case study is to highlight the challenges related to changing from one communication system to another not
only for the user, but also for the family and other communication partners.
Other children in this study also have been using more than one communication aid, so some issues addressed in the case study are relevant for other
children and their families as well, independent of the communication system.
Case study research
Qualitative research interviews may serve similar purposes as case studies.
Similar to qualitative research interviews, the aim of case study research is to
provide a rich description of a phenomenon, to analyze, illustrate and describe it in detail and to show its complexity. Case study research allows to
search for rich and in-depth information and aims to broadly investigate a
particular topic (Salminen, 2001). It adds to understand the chosen phenomenon and to learn about it in its context. Case study research takes place
in real life and thus covers contextual issues and not just the studied phenomenon (Creswell, 1998; Merriam, 1998; Stake, 1995; Yin, 1994). Case
study research needs to be differentiated from case records or subjective case
narratives, which trace a person’s past. Case studies or examples used in
professional education or scientific articles describe the case and situation,
but do not use systematic scientific methods (Coleman, 2002; Merriam,
1998; Yin, 1994). Case study research also needs to be distinguished from
single subject designs which aim to explain cause and effect relationship,
rely on experimental tradition and use statistical analysis in their investigations without covering contextual issues or providing a rich overall understanding of a studied phenomenon (Zhan & Ottenbacher, 2001). Case study
research can be defined by its contents, which are the purpose of the study,
selection of the case(s) and use of multiple methods and data sources (Stake,
1995).
A case study can be exploratory, where intuitive investigations are made
prior to defining a research question with the aim to explore cause and effect
relationships (Stake, ibid). A case study can also be descriptive, providing
complete descriptions of a phenomenon in its context (Yin, 1996). An instrumental case study examines a particular case to provide insight into a
phenomenon and actually serves a supportive purpose to facilitate understanding of something else (Stake, ibid). Embedded case studies are a design
in which a researcher studies previously selected categories or topics which
may help him/her to focus the investigation (Yin, 1994). When examining
50
the general nature of a case without having defined categories or topics, Yin
(1994) calls it a holistic design.
This study, which is based on qualitative research interviews (Kvale,
1996), falls into the group of collective case studies, a term used by Stake
(ibid) when a number of cases is studied to gain better understanding of a
certain phenomenon. In this case the target group are parents of children
with severe and multiple disabilities with the phenomena being the severe
communicative challenges of these children and their communication aids.
Such multiple or collective case studies analyze cases individually and then
across the participating cases.
Ways to conduct case study research
While usually every research is based on one or more theories, in case study
research the researcher may not use a theory at all when the focus of the
study is the case description, or may use theories to shape the study design
and analysis of data or to discuss the findings (Creswell, 1998). Case study
research requires to collect and analyze data in a systematic process and the
reporting of the data based on ethical decisions. When it comes to data collection case study research may use methods that are qualitative, quantitative
or both (Golby, 1993; Stake, 1995; Yin, 1994). For case selection the most
important criterion is to ensure that the selected cases guarantee maximal
information about the studied phenomena (Merriam, 1998; Stake, ibid).
Miles and Huberman (1994) argue that multiple case studies may add reliability to the findings and may offer even deeper understanding of cases.
However, the researcher who decides for multiple case studies must make
sure that each case either predicts similar results or produces contrasting
results, but for predictable reasons (Yin, 1994). In order to obtain a multifaceted understanding of a case and to collect information from different points
of view the researcher should use multiple sources of information, which
could be assessments and tests, observations, interviews, documents and
audio- and/or video material (Creswell, 1998; Merriam, 1998). In multiple
case studies each case first is analyzed individually before an analysis across
the cases is made (Merriam, ibid).
My method is based on using interviews as a tool for collective case studies and cross-case analysis. Cross-case analysis is done to facilitate understanding of similarities and differences in the outcomes of individual case
studies (Salminen, 2001).
Ethical principles in research
“Ethics in research is not a new and untouched area, but an area that must be
highlighted more often and in a broader perspective.” (Brodin & Renblad,
51
2000, p. 151). The act concerning the ethical review of research involving
humans went into effect January 2004 (CODEX, SFS 2003:460). There are
four ethical principles that should be taken into consideration when research
involves human beings:
The first principle is about information, that is the participants’ right to receive information about the whole research process, which includes the aim
of the study, research procedures, data collection and usage and extent of
involvement.
In my study the parents of children with complex communication needs
read and agree to the conditions of the study. The parents receive information regarding the nature and aim of the study before they decide to participate in the interviews. All interviewees are questioned following the same
interview guide, though some may provide answers that might lead to additional questions. A few of the questions, especially those regarding the personal situation, for some may be more difficult to answer than for others.
Parents are free to choose not to answer a question.
The second principle is about self determination. The participants have a
right to decide on participation in the research and to leave the project if they
do not wish to continue. It is important that there are no bonds or relationships of dependency between the researcher and the informant. To avoid a
dual role conflict I was careful not to include families of children in my
study with whom I have been working in my position as a speech language
pedagogue at the same time.
The third principle is about confidentiality. Participants have a right to be
treated with confidentiality and integrity. It is the researcher’s duty to protect
the person from identification and to treat data confidentially.
In my study the interviewees are the parents. Their children, however, in
most cases are unable to consent or disagree with their parents’ participation
and thus sharing information that directly is concerning them. All interviewees for this study are guaranteed anonymity. Brodin and Renblad (2000)
point out that even if a person prefers to be mentioned under his/her actual
name it is the researcher’s responsibility to inform him/her about possible
future consequences. In most cases the involved children themselves are not
able to decide whether they want their names mentioned, and that therefore
the use of pseudonyms should be preferred.
The parents in my study are encouraged to approve or disagree with the
names the children are given in the study as well as with the information that
is provided about their children.
The fourth principle is the restricted use of collected data. Information
which was obtained for research purposes should not be used for purposes
other than research.
All interviewees for this study are guaranteed that their interviews will
only be used for research purposes and not be disclosed to others who are
not involved in the study. The interviewees know that although the whole
52
interviews will not be published verbatim in the study, quotations will be
used for clarification or strengthening a certain phenomenon.
Research may involve conflicting interests; bonds (e.g., relationships or
dependencies) should be shown openly in order to maintain public confidence in research. No bonds of that kind are involved with this study.
There is a difference between studies of humans which are based on measurements, and studies based on interviews or dialogues, as is the case for this
study. Any interview situation involves ethical issues, as the interaction between two persons means that both experiences and research aims contribute
to the knowledge on both sides (Brodin & Renblad, ibid).
The power the interviewer has to direct the interviewee is an ethical issue,
and this power starts with the location that is chosen for the interview. In this
study it is the parents’ decision where they want to be interviewed.
Another issue arises when the interviewer is asking emotionally charged
questions, although different persons react differently to issues which are
likely to rise emotions. The researcher nevertheless has to be aware of the
process that might be started when the interviewee is asked emotionally
charged questions and needs to develop a feeling for when the answer to a
question becomes too emotional or uncomfortable for the interviewee.
In most instances the interviewer will try to create an atmosphere that
makes the interviewee feel comfortable for the time he/she is participating in
the interview. At the same time the researcher needs to be aware that the
closeness and intimacy of the situation may lead interviewees to share information they might regret having shared at a later point of time. To keep a
balance asks for sensitivity in how far to go in the questioning for this study.
Ethical issues are also involved in research regarding the development of
ICT and assistive devices. All children who are involved in this study are
using various technical communication systems in addition to other communication modes. My study focuses on how parents deal with communicative
challenges with and without devices. By letting the parents explain how they
view their children’s communication and their communication aids I aim for
increased understanding of this phenomenon.
Technology can, as it is the case with most of the participating children
and adolescents in this study, help to bridge the gap between communicative
demands and the inability to speak.
Several issues can arise during the process of research and development
of assistive devices, including considerations regarding the involvement of
persons with cognitive impairments. When it comes to communication aids,
only a small percentage of users has an influence on the choice of the communication aid and on the vocabulary that can be expressed via the aid (e.g.,
Balandin & Iacono, 1998; Pickl, 2005).
When a person who participates in a study is testing a product which
helps to improve the quality of life of that person, it is an ethical question
53
whether that product should be removed when the trial period is over, returning the individual back to the original state. With only one exception all of
the children who are involved in this study actually own their communication aids. The one child who does not own his communication aid but borrows it from his school, is allowed to use it as long as he needs it, there is no
deadline to that allowance as long as he attends school. None of the children
are in the state where the aid is lent to them for a limited period of trial.
Finally there is the issue of who should be responsible for the development of assistive devices, when the future users of those devices only will
form a relatively small group (Pickl, 2005). Brodin and Renblad (2000) suggest a higher responsibility at the side of the government as it is currently,
since developing products for a limited market may constitute a risk for
companies and manufacturers.
54
Description of the children in the study
Nine children and one young adult – six boys, three girls and one young
woman - ranging between age seven and twenty years are involved in this
study. All of the children in this study have various forms of cerebral palsy
due to pre-, peri- or postnatal cerebral lesions, accompanied by cognitive and
sensory deficits of varying degrees. Their motor impairments vary from being severely restricted and dependent in all activities of daily life to being
ambulant and fairly independent in daily life activities.
The majority of the children belong to the impressive language group;
thus supplying them with an adequate communication system does not mean
they will automatically have access to language, the ability to comprehend
others or to express themselves. The participation model served as base for
the approaches which have been used with the children in the study who are
belonging to the impressive language group. Two children belong to the
expressive language group.
All names of the children in this study are pseudonyms and have been approved by the parents. The descriptions are based on the children’s medical
and psychological records as well as parental information obtained in the
interviews. The transcripts containing the compiled information have been
approved by the parents.
The description of the children in this study is followed by a brief description of the communication modes they are using. The high tech communication system which is used by the two children belonging to the expressive
language group is discussed in detail in Appendix 1, as one of the children
has previously been in the focus of a case study (Pickl, 2005).
An overall description of the ten children is presented in Table 1. Schooling,
communication and family involvement regarding AAC are presented in
Table 2. In order to facilitate reading a wordlist of the terminology used in
the description of the children is included in Appendix 3. The communication aids the children are using are presented in Appendix 4.
55
Table 1. Description of the participating children
Name
Gender
Age
Disability
Motor
situation
Speech
Mobility
Cognitive
situation
Receptive
language
Alexander
M
7
CP,
autism
spectrum disorder
flaccid –
ataxic
symptoms
none
Walks
with
support,
W
Severely
impaired
Severely impaired
Nadine
F
8
CP
severe
spastic CP
none
W
Moderately to
severely
impaired
moderately impaired
Moritz
M
8
SD
Minimal
cerebral
palsy
severely A
impaired
Moderately impaired
Biling. in Spanish
and German with
moderate receptive
impairments
Timmy
M
9
CP
Athetoid
CP
severely W
impaired
severely
impaired
moderately to severely impaired
Jan
M
9
CP
Spastic CP
none
W
severely
impaired
bilingual in Polish
and German with
receptive impairments
Charles
M
11
CP
Ataxia,
myopathia
Verbal
apraxia
W
severely
impaired
bilingual in English
and German with
moderate receptive
impairments
Sandro
M
12
CP, VI
Spasticathet. CP
none
W
Moderately to
severely
impaired
moderately impaired
Elisabeth
F
20
CP, Sp.B.,
hydrocephalus,
Flaccidspastic
paralysis
Few
words +
phrases
W
Moderately to
severely
impaired
moderately impaired
Right side
hemiplegia
Oralverbal
apraxia
A
Learning
disability
good
none
A
Learning
disability
good
SD
Desiree
F
13
schizencephalia
Tina
F
17
malformation of Left side
right cerebral
hemiplegia
hemisphere, SD
CP = cerebral palsy, SD = seizure disorder, VI = visual impairment, Sp.B. = Spina Bifida.
W = wheelchair, A = ambulatory.
56
Receptive language skills regarding the children:
Good:
children are able to comprehend verbal language referring to present and
everyday situations in the immediate environment.
Moderately
impaired:
children are able to comprehend most of verbal language referring to present and everyday situations in the immediate environment, but seem to do
better with additional clues (e.g., objects or other visual materials, use of
gestures, mimics, simple wording).
Severely
impaired:
children seem to comprehend only very little of verbal language referring to
present and everyday situations in the immediate environment.
Table 2. Schooling, communication and family involvement regarding AAC
Name
Schooling
AACdevice(s)
Other communicative
possibilities
Family involvement
regarding AAC
intervention
Alexander
Special
2 BIGmacks,
Supertalker
Gaze, vocalizations, individual signs
high
Nadine
Special
Memotronic,
Tech/Talk,
aided
Mimics, gaze, vocalizations
high
Moritz
Mainstreamed
Tech/Speak,
independent
pointing, signs, few words
high
Timmy
Special
Tech/Talk,
independent
Mimics, pointing, gaze,
vocalizations
moderate
Jan
Mainstreamed
Go Talk,
aided
Mimics, gaze, vocalizations
high
Charles
Mainstreamed
Tech/Talk,
independent
pointing, adapted signs,
vocalizations
high
Sandro
1st 4 years mainstreamed, now special
Tech/Talk,
aided
mimics, vocalizations
moderate
Elisabeth
9 school yrs in special
classrooms, now in day
care center
Tech/Speak,
nearly independent
Mimics, gaze, few words
and phrases
high
Desiree
Mainstreamed
Power Talker,
independent
mimics, pointing, gestures,
few words
high
Tina
Mainstreamed
Power Talker,
independent
mimics, pointing, vocaliza- high
tions
57
High family involvement:
Moderate family involvement:
Aided use of AAC-device:
Parents express great interest in using the device with the
child and frequently integrate the device when playing
and communicating with the child.
Device is accepted, but no special efforts are made to
integrate it into daily life.
Child requires help in pressing a location to elicit the
message.
Base for the ratings:
Disability and motor situation:
Cognitive situation:
Schooling:
Mobility:
medical records
medical and school records, parental information
school records
parental information, medical records, author’s observation
Speech and receptive language:
parental information, records of speech-language therapy
AAC-devices:
parental information, records of speech-language therapy
and school, author’s observation
Other communicative possibilities: parental information, author’s observation
Family involvement in AAC-intervention: records of speech-language therapy and
school, author’s observation.
Children of the impressive language group
Alexander
Alexander is seven years old and presents symptoms of flaccid - ataxic cerebral palsy and severe cognitive impairment with symptoms of autism of unknown genesis. Both of his elder siblings have shown typical development
and are currently attending high school.
Alexander was born with a torticollis, and his mother noticed differences
in his early behavior compared to his two siblings. He was, however, able to
suck on his mother’s breast, screamed and showed reactions to his environment. When Alexander was two months old he suffered from an inflammation of his femur bone, which was discovered too late and led to a massive
sepsis with blood-poisoning, pneumonia and inflammation of the bowels.
Afterwards the parents noticed a significant change in their son’s behavior:
He was unable to suck, did not scream and showed no reaction to any sensory input. He neither moved his limbs nor raised his head, and his muscle
tone was extremely flaccid. Aside from gradually gaining weight his development seemed to have stopped. A major issue was Alexander’s digestion,
he frequently suffered from stomach cramps and seemed to have problems
with a variety of foods, although no specific allergies had been detected.
Finally the parents had found help at an institution abroad specializing in
children with severe and multiple disabilities, where Alexander was prescribed a specific diet omitting milk, gluten and sugar. He was exposed to a
wide range of therapies since his first year of life; he learned to walk with
58
support at age five and is now able to manage short distances independently.
He also has learned to feed himself and demonstrates preferences among
foods. Alexander spent three years in a mainstreamed preschool and is currently attending his first school year in a special classroom. Within the
school setting he receives speech-, occupational and physical therapy as well
as visual stimulation.
Communication
Alexander seems to understand familiar situations, but has limited understanding of spoken language. He is unable to respond to questions and has
no signals for “yes” and “no”, but shows approval by smiling and vocalizations and disapproval by sounds of distress and biting his arm. He has favorites among his toys (e.g., rubber- and stuffed animals), which he likes to
wiggle in his hands and to explore orally. He enjoys outdoor activities like
picking grasses or leaves to smell and taste them.
His mother had taken the initiative to supply her son with communication
aids (BIGmacks™, later Super Talker™) and had trained the staff in preschool to use the devices with Alexander, mainly for choosing between
songs or eliciting certain activities.
Alexander was taught to use individual signs that were part of his motor
repertoire to indicate basic wants (e.g., his toy pet, noodles, salad), which for
the first time allowed him to indicate a desire out of his own. The mother is
highly engaged in passing her son’s specific communication on to others,
especially in his class and group home, by capturing his individual signs in
pictures and DVDs and providing explanations how to respond to the signs.
She also encourages the environment to use his technical devices to allow
him increased independence and facilitate his understanding of cause and
effect.
Nadine
Nadine is an eight years old girl with severe spastic cerebral palsy. After a
normal pregnancy Nadine was born two weeks early with a birth weight of
4600 g. The mother reports difficulties with Nadine’s sucking during breast
feeding and periods of extreme crying and screaming during the first four
months. At the age of six months the first BNS-seizures were observed by
the mother, cerebral palsy was diagnosed at seven months by the pediatrician. With adequate medication and a milk free diet Nadine has been free of
seizures for the past four years. She lives at home together with her mother,
her step father and step brother. Nadine uses a wheelchair with a specially
adapted seating mould as she has poor head control and only gross arm
movements. Fine movements of hands and fingers are impossible. The oral
motor situation including intake of food and liquids is severely affected (no
active lip closure, restricted tongue movements, no saliva control). Nadine
59
had received various therapies since her first year of life (speech, physical,
occupational), including several visits to a dedicated center in the Ukraine,
which specializes in manual therapy.
Nadine attended two years of a mainstreamed preschool and at the time of
the study was in her second school year in a special classroom. Her favorite
activities are looking at pictures, listening to short stories or to music, watching short videos and playing games together with family members. Within
her family and in her neighborhood Nadine has frequent contact with non
disabled children, with whom she enjoys playing.
Communication
Nadine is interested in her environment and demonstrates good receptive
language skills regarding the immediate situation. Nadine mostly communicates via eye gaze and vocalizations; sometimes, given she is relaxed and in
a good position, she is able to intelligibly articulate short words. Her attention span is rather short and she easily gets distracted. She appears to understand the concepts of “yes” and “no”, but is not always able to give a definite
response. Since symbols for “yes” and “no” have been glued to the opposite
corners of her lap tray her responses can be interpreted more reliably.
Already during preschool the mother was engaged to find a communication aid for her daughter, who first used a Memotronic™, later a
Tech/Talk™. Those technical aids are operated via direct manual access,
although Nadine requires help to press the targeted location to elicit the message. Her mother produces overlays to enable Nadine increased participation
during games or for making choices. The family encourages Nadine to use
her communication aid as often as possible, at home as well as in public.
Moritz
Moritz is eight years old and according to the records of his speech language
therapist demonstrates symptoms of childhood aphasia and verbal apraxia.
His mother’s native language is German and his father’s Spanish. He has
been brought up in a bilingual environment and has always been exposed to
both languages. The mother had experienced daily labor pains during the last
two months of pregnancy, during birth the boy was asphyxic. When he was
one week old he suffered his first seizure, the last one with breath interruption during the convulsions was observed when he was six months old.
Moritz is now free of seizures and for the past five years has been free of
medication. He has an elder sister with typical development.
Moritz was born in Argentina, where the parents were given a pessimistic
diagnosis regarding his future development. Moritz did not crawl and
learned to walk during his third year of life. He spoke his first words at age
three, but afterwards he had lost words and also sounds again. Moritz spent
his first four years in Argentina before the family moved to Austria. After
60
preschool Moritz attended an inclusive classroom and at the time of the
study was in his second grade, following a special curriculum. Moritz enjoys
music, vehicles, animals and outdoor activities. He is well integrated among
his non disabled peers, who show great interest in his various communication modes such as his signs and communication device.
Communication
When Moritz entered school in Austria he demonstrated good receptive language skills in both Spanish and German as long as the topic referred to the
immediate situation. In Argentina Moritz had received speech therapy in
both German and Spanish, physical therapy (massage) and early musical
education; his mother had started to create individual signs to communicate
with Moritz. In Austria Moritz attended a preschool with an inclusive program, where he received speech- and physical therapy as well as psychological treatment. On a private base he also received hippo-therapy. In speech
therapy the individual signs between Moritz and his mother were expanded,
combined with signs from the Austrian sign language vocabulary. In addition to the signing Pictograms were introduced.
Moritz’ attention span is short, he easily gets distracted and needs regular
pauses between periods of work. To facilitate Moritz’ communication with
others his mother had made a list containing the words he was able to sign,
and another one with the vocabulary which he could express verbally. These
utterances needed translation because they rarely resembled the actual words
and either contained bits of Spanish or German or sometimes just onomatopoetic sounds (e.g., clicking the tongue for “horse”). He is talented to imitate
sounds of his environment (e.g., of vehicles or animals) and also uses these
sounds for communicative purposes. During Moritz’ first school year the
school purchased for him a communication aid with recorded speech – the
Tech/Speak™. That device together with various overlays is used regularly
at school as well as at home. Over the past two years Moritz’ verbal speech
has increased significantly, he is able to produce more and more words
which are understood even by unfamiliar persons.
Timmy
Timmy is nine years old and has severe athetoid cerebral palsy and dysarthria. He is the only child of his parents. In the 25th week of pregnancy a
hernia of the diaphragm with aplasia on the right side was diagnosed. After
birth Timmy experienced problems with breathing, so he received extracorporal, osmotic support of his respiration. At the fifth day Timmy had to undergo surgery to be supplied with a goretex diaphragm prosthesis. During
the following five months Timmy had to remain in the hospital and needed
tube feeding for the next two years. Visual and logopedic treatment started
when Timmy was two months old, physical therapy at the age of four
61
months, later occupational- and hippo-therapy. He still demonstrates significant oral motor problems with lack of lip closure, tongue thrust and lack of
saliva control. Generally Timmy uses an adapted wheelchair with head support and a lap tray, but he also is able to propel himself forward independently in a gait trainer on wheels with a special flexible seat in between bars.
He can use his right hand for gross motor movements and pointing. After
three years in a special group within an inclusive preschool Timmy now
attends the second grade in a special classroom. His attention span is extremely short, he most enjoys “action activities” like banging or hitting objects, tearing down curtains, kicking balloons to make them burst, etc.
Communication
Timmy’s mother reports that he knows many words of his immediate environment, but still lacks understanding of vocabulary which normally would
be expected of a child of his age.
He is able to produce onomatopoetic sounds which he is using consistently for certain words, e.g., “wau wau” for “dog” or “rrr” for “zipper”.
Both “yes” and “no” are produced intelligibly, but are not always used reliably, so it is unclear whether he really understands the concepts yet. Regarding Timmy’s speech output there is a significant discrepancy between what
his mother reports to understand and what is understood in school and his
group home even by people who know him well like his teachers or close
care givers. While the mother does not need any kind of communication
aids, in school and during speech therapy his communication is supported by
a Tech/Talk™ with overlays to various topics, which he obviously enjoys
using.
Jan
Jan is a nine years old boy with severe spastic quadriplegia. After having
been born prematurely in the 28th month of pregnancy Jan had spent the
following two and a half months in an incubator. In his third week of life
cysts developing within the motor cortex were diagnosed and within the first
months the diagnosis of cerebral palsy was established. Five years later Jan
got a brother who also was born prematurely and is impaired in his motor
and language development, although to a much lesser degree than Jan.
Within his inclusive classroom Jan is taught following an individual education plan. He is well liked by his non disabled peers, who try to include
him whenever possible. His time in school, however, frequently is interrupted for longer periods: Jan’s health is rather fragile and he tends to suffer
from infections of the upper airways. In addition to various therapies
(physio, speech, occupational) one parent twice a year accompanies him to
special therapy camps for children with cerebral palsy, each lasting three
weeks. Jan uses a special wheelchair with an adapted seating system.
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Communication
Jan’s family had moved from Poland to Austria before he was born. His
native language is Polish, the main language spoken within the family; the
mother only speaks Polish at home, while the father sometimes is using
German in the family communication. The family is keeping close connections to relatives in Poland and visits there frequently. Since Jan had attended two years of preschool in Austria he was able to understand German
to a limited degree when he started school in an inclusive classroom. It is
difficult to assess Jan’s receptive language performance, but the parents report that his passive vocabulary in his native language does not correspond
to the vocabulary of a child his age; they rather compare his passive language level to that of a preschool child. Aside from calling his parents
“Mama” and “Papa” Jan has no possibilities of verbal communication, but
he is able to respond with “yes” and “no” via head nods or shakes when
asked questions. Jan is a friendly child and also uses smiles to communicate,
but his smiles rather are reactions to others approaching him than him taking
an initiative. He is able to perform gross motor movements with his left arm;
he also uses his left hand to operate his communication device, a Go Talk™
with nine locations, but sometimes needs help with pressing the target to
elicit the recorded voice. Jan is able to recognize pictures as long as they
represent persons or objects of his immediate environment and are not too
complex in drawing and too small in size, as his ocular motor situation is
impaired.
Charles
Charles is eleven years old and is diagnosed with mitochondrial myopathia
and ataxic cerebral palsy. When his mother had noticed reduced activity of
the child in her eighth month of pregnancy he was delivered via a caesarian
section. Charles is the second son (the first son had typical development)
born in the US to an American mother and an Austrian father and thus grew
up in a bilingual environment where both German and English were spoken
at home. The family moved to Austria when Charles was five years old. He
had been in an early intervention program when the family still lived in the
US and also attended his first years of preschool there, where he was enrolled in a special program. Charles is a social and outgoing boy and is well
accepted by his non disabled peers. He is non ambulant, but can use his arms
and hands and is able to propel his manual wheelchair independently over
short distances.
Communication
The family has used various modes of AAC with Charles since he was three
years old, when adapted signs of ASL (American sign language) and single
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message communication aids (BIGmacks™) and switches to access special
computer programs had been introduced. Before the family moved to Austria
Charles’ speech therapist in the US had recommended to purchase a
Tech/Speak™ as a future communication aid, also considering that in Austria communication aids would not be covered by insurance.
In Austria Charles attended one more year of preschool in an inclusive
group and demonstrated understanding of simple conversations and short
requests in both German and English. He spoke his first word at the age of
four years (“Mama”). When he entered first grade of an inclusive class he
was producing sounds and syllables of both languages to name persons and
objects in a consistent manner, but his vocabulary was quite limited (besides
“Mama” he called his dad “dada”, his brother “Nana”, himself “Tsts”,
French fries “ff” and the color yellow “lala”). He was also using adapted
signs of ASL, both for answering and for initiating, but his signing vocabulary was limited and consisted of signs for “please”, “thank you”, “me”,
“you”, “help”, “play”, “more”, “hungry”, “thirsty”, “hot”, “cold” and “airplane”. Charles has a clear understanding of “yes” and “no”, “yes” being
verbalized (“aah”), “no” indicated by an individual sign.
Since the mother mostly speaks English to her sons and the family continues to visit the US regularly it was decided to stick with ASL and not change
to an adapted version of the Austrian sign language. To facilitate understanding of Charles’ signs by unfamiliar persons he was photographed while he
produced each sign, and together with the meaning of each sign those pictures were collected in a binder. Soon it turned out that Charles could not
manage the 32 locations of his Tech/Speak™, the single squares were too
small for him both to access the target correctly and not hitting an unwanted
location as well as to recognize the pictures. The family could exchange that
device for a Tech/Talk™ with eight locations on eight levels, which turned
out to be more appropriate for Charles. The current goal of speech therapy is
to expand all of the communication modes Charles is using, so he is encouraged to sign, to use his Tech/Talk™ when appropriate and also to use his
voice.
Charles is highly allergic to protein and therefore needs a special diet. To
enable him to choose within the reduced variety of food he is allowed to eat
each food item was photographed and collected in a special binder. During
mealtime Charles also uses a special placemat with PCS (picture communication symbols) to indicate whether he wants more of something or has had
enough.
Sandro
Sandro is twelve years old and is diagnosed with severe spastic-athetoid
cerebral palsy and central visual impairment. He has an eight years elder,
non disabled brother. Sandro was born prematurely in the sixth month of
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pregnancy and had received early intervention since his first months of life,
followed by visual stimulation, physio-, occupational- and speech therapy.
Although the parents had been confronted with the diagnosis of cerebral
palsy when Sandro was a few months old, the prognoses they were given by
doctors regarding his future development were quite variable and – as it
turned out later - too optimistic. The parents had been assured that he will
acquire speech and be able to use his hands, but e.g., might have problems
with playing soccer or writing with a fountain pen. When it became obvious
that Sandro was likely never to acquire any of those skills the parents started
to look for all kinds of therapeutic approaches which promised improvement
of their son’s state and visited dedicated institutions also outside the country.
At home a rigorous therapy plan was established with special training sessions three times a day, also involving care givers from outside the family
since both parents were working. When despite several years of intense efforts none of the approaches seemed to lead to the desired outcomes the parents gradually resigned and Sandro “only” received the traditional physio-,
hippo-, occupational- and speech therapy as well as visual stimulation that
were offered by his preschool and later school. Sandro had spent three years
in an inclusive preschool and four years in an inclusive classroom. Due to
his outgoing and socially orientated personality he was always well accepted
by his non disabled peers and included in activities whenever possible. After
he had finished elementary school he moved to a special middle school
classroom, where all of his classmates were in need of special support,
though to varying degrees.
Communication
While early on Sandro had demonstrated good receptive language skills, due
to his oral motor problems (associated reflexes, no active lip closure, tongue
thrust, inability to swallow the saliva) he was and is unable to produce intelligible words aside from “hi”, “yes”, “no”, “i a” (in German ”ich auch” –
“me, too”), “oje” (sound of regret), as well as limited vocalizations to name
certain persons and to indicate thirst. These, however, need clarification and
generally are understood and interpreted correctly only by people who know
him well. When he was three years old he was introduced to BIGmacks™,
which he was able to hit with his left hand, for choice making or commenting on picture books. Two years later, during preschool, he received a
Tech/Talk™ with eight locations, which he still is using. Sandro’s communication device is used regularly in school and during speech therapy; he has
a large collection of overlays for his Tech/Talk™ for various occasions and
topics which are put into the device according to the situation. Sandro uses
his left hand to indicate the desired location, but frequently needs help with
pressing to elicit the message. Due to his visual impairment he clearly profits
from the speech output feature; in case he elicits a message he had not aimed
for he comments with “no” and tries again. The overlays mostly consist of
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Picture Communication Symbols and photos, which need to be fairly large
and of good contrast to be perceived by Sandro visually. Without the communication device Sandro’s communication is reduced to comment stories or
events by sounds of joy or distress and answering questions with either “yes”
or “no”, usually in a quite reliable manner. Despite Sandro’s communicative
limitations the family reports not to use the communication aid at home,
where he only communicates verbally and via mimics. Although he is not
always understood the family still perceives unaided communication easier
than using the device.
Elisabeth
Elisabeth is twenty years old and was born as the first child to her family;
she has three younger sisters. After Elisabeth had been born with spina bifida
the parents were persuaded by doctors not to insist on surgery to close the
myelomeningocele since she was not expected to live past the next days.
When Elisabeth had survived the first days despite the fatal prognosis the
parents were told that now it was too late for surgery, which would have had
to be performed within the first six hours following birth. So up to this day
Elisabeth lives with an only partially covered myelomeningocele. While
according to the father in the first hours after birth the child had shown motor functions on both lower extremities, due to following frequent infections
of the spinal marrow both the motor as well as sensory functions of the
lower extremities, including bladder and bowel functions, over time decreased to a point that Elisabeth now demonstrates the symptoms of complete diplegia. As with many children with spina bifida Elisabeth had developed a hydrocephalus and was supplied with an external shunt (internal
drainage was impossible due to the thickness of the liquor). In addition to the
flaccid paralysis of the lower extremities Elisabeth’s upper extremities are
affected with spasticity. It is not clear whether that was the consequence of a
following meningitis or her severe seizure disorder. She uses a wheelchair
with adapted seating mould and headrest and wears a body corset to support
her spine when sitting in the wheelchair. When positioned either in her chair
or prone on a wedge she has controlled movements of her arms within a
limited range.
Elisabeth spent all her school years in a special classroom within a setting
for physically and multiply disabled children and received a variety of therapies. Since she left school at age 18 she is attending a day care center for
young adults with severe and multiple disabilities.
Communication
At the time Elisabeth had started school she was able to utter a few commands (“come here”, “do this now”, “stay here”) and use a limited repertoire
of questions (“you come, too?” “Dad come with car?” “You here with car?”
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“You not there!”), all without symptoms of dysarthria, but demonstrating
symptoms of childhood aphasia. She was unable to name persons aside from
her family members (for one sister only using the last syllable of her name).
Besides “car” she was unable to name any objects; even the object “car”
only was named when embedded within a phrase. When after a year of intense verbal speech therapy no progress was achieved in increasing Elisabeth’s communicative repertoire family and teachers agreed on supporting
her with a nonverbal communication mode, in her case a low tech board with
picture communication symbols (PCS) and photographs. Over time she
learned to use her board efficiently for choice making, participating in games
and telling others with whom she had been engaged in a certain activity.
Towards the end of her school time Elisabeth was supplied with a technical communication aid with recorded speech, a Tech/Speak™ with 32 locations on six levels. Because of her limited range of arm movements her father had constructed for her a special wheelchair tray which allows her to
move the device sideways until she is able to reach the desired location.
Elisabeth enjoys singing and music, which is performed within the family on
a daily base, helping with cooking, watching her family during gardening
and caring for the pet guinea pigs, as well as playing children games (e.g.,
finding pairs, bingo or simple strategic games using a dice). It is during those
playing situations that Elisabeth uses her device most.
Children of the expressive language group
Desiree
As that girl’s communicative development involves a variety of issues which
are related to her communication aids (moving from Picture Communication
Symbols - PCS - to Minspeak™, from a communication board and later
album to a high tech communication aid), her story is presented in detail and
in the mode of a case study in Appendix 1.
Desiree is a 13 years old girl and the youngest child in her family. She has
two elder brothers, both with typical development. After normal pregnancy
and birth the parents soon noticed differences in her development compared
to her siblings. At the age of 18 months the brain malformation schizencephalia was diagnosed, which had caused a right side hemiparesis, a moderate intellectual disability and a severe impairment regarding the speechand language development with signs of oral and verbal apraxia. Desiree is
ambulant and fairly independent in daily life activities. She also manages
intake of food and liquids without support, but has problems to control her
saliva flow and prevent drooling.
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Throughout her school years Desiree has attended inclusive settings and
always has been well accepted by her non disabled peers. Her parents treat
her in the same way as they treat her brothers, within the family she is not
granted exceptions because of her disability. Desiree enjoys activities with
peers, accompanying her brothers to sport events and taking care of the family pets, especially her dog.
Communication
According to the parents at the age of four years Desiree began to speak her
first words, but could not retrieve these words a few months later. When she
started school besides verbalizing “yes” and “no”, which were used adequately, she only managed to articulate the words “Mama” (mom), “Papa”
(dad), “Oma” (grandma) and the name of her dog. She also was able to name
her brothers, though only understandable to trained listeners. Although no
AAC mode had been tried before Desiree had entered school she was largely
successful to communicate within her family, based on gestures, individual
signs and vocalizations. When the parents were informed about alternative
communication possibilities they were open to try whatever would work best
for their daughter.
Acquiring a standard sign language vocabulary was ruled out not only because of Desiree’s inability to use her right hand, but also because of her
need to communicate with others who would not be familiar with signing.
Her visual discrimination and – memory skills as well as her cognitive situation would have allowed her to learn using Bliss symbols. The decision,
however, fell in favor of Picture Communication Symbols (PCS), based on
the assumption that her speaking peers would find it easier to communicate
with her as long as they were unable to read the words explaining the symbols. It turned out, however, that when communicating with peers Desiree
hardly ever used PCS, but rather relied on gestures, vocalizations and answering closed questions. Nevertheless she became an efficient user of her
PCS-board during classroom activities and communication intervention,
occasionally the board also was used with her parents when she was unable
to express herself otherwise. Although Desiree was able to learn the letters
of the alphabet, due to her problems in auditory discrimination up to now
spelling can at best support, but not replace picture based communication.
Her three folded board later was replaced with a topic orientated album containing small sized PCS, photos and cutouts that could be stored in a waist
bag and was well accepted by Desiree. During speech therapy and in class
Desiree occasionally used a school owned communication aid with voice
output and recorded speech, which she greatly enjoyed. With growing need
for an increasing vocabulary and regarding her future communicative possibilities the final decision fell in favor of a Minspeak™ (see Appendix 1)
based high tech communication aid with synthetic voice output. After great
difficulties to finance the device Desiree received the Power Talker ™ in
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her second grade of middle school and received training both by her speech
therapist as well as her teacher. Parental involvement continued to be strong.
Gradually mastering her high tech device and the word strategy needed to
express herself in the Minspeak mode not only has brought about an increase
in Desiree’s self esteem, it also has helped her to acquire rules of syntax and
grammar she had been unable to apply while she still was using her low tech
boards.
Tina
Tina, a now 17 years old girl, was the first child of her parents. She has two
younger siblings, a twelve years old sister and a five years old half-brother,
of which none has a disability. Tina was born with a severe malformation of
the right hemisphere and an open belly. Despite her severe left side paralysis
did she start managing short distances independently at age three. Around
age four Tina was able to feed herself, but due to the restricted tongue
movements and missing lip closure had major problems with keeping the
food within the oral cavity, chewing and swallowing. Over the years the
intake of food and liquids remained problematic, although she never had
experienced problems related to dysphagia and aspiration. She still is unable
to control saliva flow.
Tina’s parents separated when she was four years old and now are divorced, she spends every other weekend with her father’s new family where
she also has half-siblings. After having been remarried to the father of
Tina’s younger brother the mother now lives alone with Tina and the
younger brother. Tina’s younger sister currently is living with her father’s
family.
Communication
By age three Tina had developed a few individual gestures (e.g., patting her
tummy to indicate she has had enough versus rubbing the tummy to indicate
it was good) using her left hand; both parents, however, did not want to use
sign language, hoping she would learn to spell sufficiently well to allow
effective communication. Due to Tina’s severely impaired oral motor situation acquiring verbal language even to a limited degree remained completely
impossible. Tina is unable to produce any intelligible word, her only vocalization is an indifferent “huh”.
When Tina was four years old and entered preschool she was introduced
to Bliss-symbols, which she acquired rapidly and with ease. A board with
around 200 Bliss-symbols remained her main communication aid throughout
most of her school time. When Tina was in second grade a boy had joined
the class who after a near-drowning-accident had lost his ability to speak.
Due to a severe nystagmus that boy was unable to discriminate between
slightly different shapes as they are part of Bliss-symbols, but could use the
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more iconic Picture Communication Symbols (PCS). Tina acknowledged his
different communication mode, but when offered by her teacher to switch to
the more colorful system she refused to do so, since she was already well at
home within her system.
During her last year of middle school Tina was provided with a Power
Talker™ and trained in its use by her speech therapist who knew her since
her childhood. As soon as she had acquired basic skills to communicate via
the talker the Bliss board was dismissed and only was used when her speech
therapist asked her to demonstrate its use during AAC-seminars. According
to the mother also at home Tina only uses the talker in situations when she is
unable to express herself via gestures or pointing, but never uses Bliss symbols now, although before she had been a very effective user.
Tina had always attended inclusive settings and had been well accepted
by her non disabled peers, although the drooling became an increasing problem for some of her peers in middle school. Early on she had demonstrated
good receptive language skills, but was unable to acquire functional reading
or writing skills aside from recognizing and being able to spell a few familiar
and well trained words. She always was educated following a special curriculum for children with severe learning disabilities. After two years of
preschool, four years elementary school and four years middle school for
one year Tina attended a school related to household activities. Currently she
attends the eighth grade within an inclusive school based on the anthroposophic philosophy, where she continues to use her talker.
Modes of intervention and communication strategies
A variety of AAC modes has been developed since AAC had become an
option for non speaking individuals in the seventies of the past century, involving no, low or high technology. In this chapter I will only focus on intervention strategies and modes of AAC that have been used with the children in this study. Since the children vary in their cognitive, motor and sensory abilities the communication modes they are using are equally different,
ranging from individual gestures to high tech communication aids.
An overview of the communication aids the children who participated in
this study are using is presented in Appendix 4.
Go-and-stop – activities
Children functioning at an early communicative level are bound to the here
and now. As previously mentioned, any intervention at this level will only be
meaningful when it takes place with persons who the child feels secure with,
at everyday places and during activities which are part of the child’s daily
life. Important goals of intervention are to build social relationships, to imi70
tate the child’s actions, to facilitate interaction via body movements and to
make the child realize that he/she can make things happen, i.e. influence the
environment. Imitating the child’s rhythm and timing is an important element of pre-linguistic communication (Trevarthen, 2001).
Of the children who participated in this study especially Alexander at the
beginning of intervention had been fond of go-and-stop - activities.
In a go-and-stop – activity (Fröhlich, 1989) the adult initiates the activity
(typically a kind of movement) and then stops and waits for the child’s reaction, whether he/she somehow indicates the desire to make the action continue. While in the early stages the adult answers the child’s request immediately to signal understanding, at a later stage he/she may prolong response
time to elicit a more precise request from the child’s part. The child will
experience basics of communication like awareness of and response to what
is happening during an interaction, feelings of anticipation when he/she becomes able to predict what is about to happen next, intentionality (he/she can
produce an action which elicits a reaction from another person) and reciprocity - sequences of imitation and turn taking are the basis of all shared communication (Bruner, 1987).
These experiences are important, but of equal value is the process of participating in a shared activity (Lee & MacWilliam, 2002), to allow the child
the rare experience of being in control, of being an equally empowered partner. While in most societies children with typical development are allowed
to play merely for the sake of playing, with no desired outcome and no right
or wrong, play and activities for children with disabilities usually are supposed to facilitate the child’s development, to help him/her function on a
higher level and acquire new abilities. “There is a risk that children with
severe and profound disabilities are constantly faced with a training situation
and that play is only viewed as a means to train a particular function.”
(Brodin, 1999, p. 30). A go-and-stop - activity is a way of a shared playing
situation, providing a whole range of communicative possibilities on a nonverbal level, only that there is no toy between child and adult. Children with
profound and multiple disabilities first need to come to enjoy shared activities with another person before they are able to show interest in real objects.
Signing as a means of communication for children with multiple
disabilities
The question whether manual signing or a graphic system should be chosen
as a mode of communication for a child whose development of verbal language is questionable might arise especially when the future user shows
adequate motor abilities, especially hand functions. Of the children who
participated in this study Alexander, Charles and Moritz are using adapted
signs in addition to their SGDs.
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To accompany verbal communication by body movements and gestures
can be seen as an inborn quality of human communication and can be observed, though in variations and to different degrees, all over the world. The
issue of signing, however, often is linked to culture and attitudes of a country. E.g., in Austria, where this study was conducted, up to the eighties of the
past century the rule even for children with complete hearing loss was oral
education only, and not before July 2006 had Austrian sign language received the legal status of a language. Consequently, since it is not so long
ago that persons without hearing had won the battle to use that communication mode, signing is not widely spread among the hearing population. So
the hearing, but non speaking user of manual signs will not be understood by
most persons in his/her environment, aside from trained caregivers, and will
not belong to the world of the hearing impaired population either. This might
be a reason why in some cases a graphic communication mode is chosen for
a non speaking child, who would have the necessary manual skills and cognitive abilities to acquire at least basic signing, which likely would have
been the first choice if the same child were to live in a different cultural environment.
In many countries signing is offered to children with intellectual impairment and complex communication needs who have adequate hand functions,
because especially for this particular group signs are likely to be acquired
with less difficulties than graphic symbols (von Tetzchner & Martinsen,
1996). One of the biggest advantages of signing is that it can be implemented into language acquisition in a natural way, while teaching a graphic
system will always be an artificially planned act. According to the authors
(ibid), our native language is mostly learned in an implicit manner, simply
by being emerged into the language; any further language - unless someone
is brought up bilingually - will have to be learned in an explicit form, with
methods to acquire vocabulary and syntax. Non speaking children face the
discrepancy that an AAC mode might be their first language in which they
are able to participate in communication, yet that mode is taught with explicit methods as if it were a foreign language. Signs in general, however,
are not acquired more easily than verbal language or graphic systems:
Children with typical development are frequently using gestures before
they start using verbal speech, but these are so called deictic gestures, used
to lead another person to a certain place, to show or to point at a person or an
object. Symbolic gestures which represent something which at that moment
is not present are not used before the appearance of the first words (Schick,
2002).
Observations of children with congenital hearing loss showed that they
were using their first symbolic gestures at the same developmental age as
their hearing peers were using their first words, so signs are not acquired
earlier than spoken language is. The reason why many children with intellectual disabilities seem to acquire signing easier than verbal language may be
72
due to the fact that not only is the visual attention easier to control than the
auditory attention, but also that many children with cognitive deficits or
symptoms of autism are doing better in visual than in auditory processing
(Schick, ibid).
Adapted sign systems
Instead of using standardized sign systems, children with multiple disabilities typically use simplified and individualized signs which, if possible, have
been derived from the child’s own movements for a certain activity and do
not require skilled hand- or finger movements (Lee & MacWilliam, 1996).
To include movements out of the child’s already existing repertoire offers
the advantage that the child has no need to acquire a new sequence of
movements, he/she only learns over time that a movement which he/she is
already able to perform is connected to a certain person, object or activity.
Already Houghton, Bronicki and Guess (1987) state that the probability of a
person with profound disabilities using a recently learned communication
behavior in many contexts is low, unless skills are used frequently. Signs
which are based on movements that already are within the child’s repertoire
are more likely to be used for communicative purposes than signs based on
movements or gestures which are unfamiliar to the child.
For children with autism spectrum disorders their poor imitation skills and
difficulties with motor planning, control and execution (Seal & Bonvillian,
1997) are obstacles to acquire signs which are not part of their own movement repertoire. Of the children in this study Alexander falls into this category. His first individual sign was one to request his stuffed animal and consisted of his hand clapping against his thigh. This was a movement he was
observed to perform whenever he had lost his animal or another favorite
object; in order to establish a representative function it was then linked
strictly with the toy animal.
A problem related to highly individualized signs lies in the limited number of persons who are able to understand the signs the child is performing.
To some extent that problem can be overcome by providing pictures and
explanations of the child’s signs for the locations where the child spends
most of his/her time.
Even children who are unable to perform signs or gestures themselves
might profit from others signing to them (Lee & MacWilliam, 2002). One of
the major benefits of accompanying language with signing the key words is
that not only is the communication partner forced to slow down, but also has
to focus on the content of his/her language, avoiding rhetorical questions
which the child neither might understand nor has a chance to answer. By
accompanying speech with signing the communication partner is more likely
to use words the child might understand and to reduce the speed of spoken
language. Eriksson and Berglund (1999) studied the relations between gestures, vocabulary comprehension and vocabulary production in young in73
fants and found that vocabulary comprehension was positively related to the
use of gestures. In Sweden since the early eighties of the last century children with Down Syndrome are regularly taught to use manual signs to support their communication, thus helping them to compensate for problems in
auditory processing and skilled oral motor movements. This mode of intervention is used in other Scandinavian countries as well and seems to facilitate both vocabulary comprehension as well as production in children with
Down Syndrome who are in the process of acquiring language (e.g., Berglund, Eriksson & Johansson, 2001; Launonen, 1996).
Children with multiple challenges profit from the visual component of
language being enhanced with signs (the same is true for pictures, given they
represent meaning for a child); information which is presented in a multisensory form usually is being processed easier cognitively by a child who has
deficits in one or more sensory areas (Burkhart, 2002). Previous research
investigating children with intellectual impairments and/or autism spectrum
disorders showed that quality of language improved in the children who had
received systematic training in sign language (Grove & Dockrell, 2000; von
Tetzchner & Martinsen, 2000).
Communication passports or contact books
Persons who are unable to express their needs and feelings rely on their
caregivers to interpret their communicative attempts. Especially at times
when such a person is moving into a new environment and facing new and
unfamiliar caregivers, a so called communication passport or contact book
can help to avoid or decrease feelings of frustration on both sides (Millar &
Aitken, 2003). Creating such an “all about me-book” takes the effort of as
many people as possible who are familiar with the child and can tell something about the child out of own experience. Written in the first person, as if
the child him/herself were the author, needs, favorites and dislikes, special
abilities, stress causing factors as well as calming possibilities are described
and illustrated. The more individualized the layout is, the greater is the likelihood that such a book will be used and read also by laypersons (Millar &
Aitken, ibid).
Of the children who participated in this study similar books have been
created for both Alexander and Charles. Although Charles is communicating
on the symbolic level and uses a restricted sign vocabulary in addition to a
technical communication aid, his communication possibilities are too limited
to allow him sharing all that is important to him with others. In his case the
contact book continuously is adapted according to new events in his life and
also serves as a communication starter.
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Objects of reference
Objects can be useful communication tools for many children with multiple
disabilities, without vision or hearing per se being necessarily severely affected. Objects which are part of the daily routine might at a later stage serve
a representative purpose, which means to distinguish between the representative object and the object which is actually used: E.g., the cup the child takes
up to indicate he/she is thirsty is not the same he/she then will actually be
drinking from, otherwise the child has no chance to comprehend the representative meaning of the given object (Park, 1997).
Lee and MacWilliam (2002) suggest starting with real objects to gain
children’s interest. When children with physical impairments are to choose
among objects, Burkhart (2002) recommends to combine action with the
objects: Children with mobility impairments usually do not gain much benefit from merely holding an object, while they might have fun watching it
perform an action or being part of that action with adequate support.
For children who due to visual or other problems rely on objects it is relatively easy to pick a cup or straw to represent “drink” or a spoon to indicate
“eat”; it may, however, be a challenge to represent bigger objects or even
places. Recognizing miniature objects as representatives of their real counterparts is cognitively more demanding than recognizing an actual small part
of the given object to represent the whole (Zollinger, 1995). So instead of a
miniature representation of an object a part of the actual object might serve
the representative function. Places can be represented by typical textures
(e.g., of a floor or wall). A possible way to represent persons are duplicates
of accessories which are typical for a certain person, e.g., a bracelet, anything the person usually is wearing when approaching the child to help
him/her grasp the connection between the representative object and the actual person it stands for.
Even for a child with profound and multiple disabilities who is unable to
actively use the objects for communicative purposes their use still allows the
child a sense of control and anticipation. Not only gives this multi-sensory
approach the child a better chance to process the information (Burkhart,
2002), he/she also is allowed the necessary time to anticipate the following
action and react to it.
Among the children in this study Nadine is using objects to for example
indicate her choice of songs in class. Nadine is able to recognize the representative meaning in pictures, but some of her peers in her special classroom
are not, so objects were introduced to represent certain songs or activities.
Technical communication aids
Speech generating devices (SGDs), in the literature also referred to as voice
output communication aids (VOCAs), are portable electronic devices that
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produce synthetic or digitized speech output (Thunberg, 2007). The devices
used by the children in this study are either simple technical aids or high tech
communication aids (see Appendix 4). Only two children are using high tech
communication aids, while eight are using simple or low tech communication aids.
Simple technical communication aids
Simple communication aids, where messages are recorded to fit a certain
situation, can aid children in their communicative attempts and in creating
possibilities of increased participation and choice making. Being able to
make choices not only helps the individual to develop a sense of the self and
at least some sense of independence, it also increases cognitive engagement,
helps to reduce passivity (Burkhart, 2002) and is of great importance for an
individual’s health and quality of life (Brodin, 2000). For children with severe and multiple challenges the use of simple SGDs can be of great value
and the approach to these devices over time has become quite a different
one. In the early days of AAC the belief was that a child needs to have an
understanding of pictures or symbols for the purpose of communication before he/she was to try a technical device, which might also have been due to
the fact that the costs for technical devices were high and no one wanted to
risk a failure purchase (Vanderheiden, 2002). The results of research have
shown, however, that a child might easier grasp the connection between
his/her action and the environment’s reaction by the constant auditory feedback provided by an SGD than by being trained to use a certain picture or
symbol, which for the child might not be representative at all for an action or
object (Beukelman & Mirenda, 1998; Sigafoos, Drasgow & Schlosser,
2003).
Many of these SGDs are so called single message communication aids. Of
the children who participated in this study they have been used by Alexander, Charles and Sandro in addition to SGDs which allow a choice of multiple messages. While Charles mainly uses an SGD with multiple locations, he
uses a single message device to greet his teacher in the morning. Sandro uses
two single message devices for choice making in addition to an SGD with
multiple locations. Some SGDs also have a switch function to operate any
battery powered toy or other technical appliances. Sometimes before the
child can grasp the power of communication he/she needs to discover that it
actually is him/her who can make something go or stop. Learning how to
have an impact on the environment starts at birth and lasts a lifetime, it begins with the first small impact and needs to be built up over the years
(Burkhart, 2002). According to Alexander’s mother, an interviewee in this
study, an SGD with additional switch function was among his first objects of
shared relevance – he was fascinated by him and his mother taking turns in
turning a light chain on and off via the switch.
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Another reason for equipping a child with profound and multiple disabilities with a simple SGD is based on the fact that a child with profound and
multiple disabilities gets a different response from his/her environment when
he/she is equipped with an obvious communication aid, even though the
child may hit the switch merely accidentally. Severely involved children are
often regarded as being passive and treated accordingly, which means they
are rarely addressed directly by people other than their immediate caregivers.
If the children are equipped with a communication aid which allows them to
elicit short phrases, chances for responses are likely to increase even if the
switch was activated involuntarily. By treating the child as social and communicative, he/she gradually becomes so. Through the actions of his/her
communication partners the child experiences that what he/she does has a
meaning for others. Because the behavior is treated as if it were meaningful,
the learner begins to understand that a behavior can have a shared meaning
(Hewett & Nind, 1993).
A big advantage in using simple SGDs with recorded speech lies in their
clarity of messages: While the speech output makes a possible request of the
child clear to even an untrained listener, the same person might have problems to pick up the child’s wish only by relying on his/her body movements
and vocalizations (Sigafoos et al., 2003). The child is more likely to receive
reinforcement for his/her communicative attempts and might easier grasp the
power of communication (Schlosser, Blischak & Koul, 2003).
To facilitate the acquisition of basic skills of interpersonal communication
like turn taking, pausing and waiting for a response Musselwhite and
Burkhart (2001) suggest the use of what they call social scripts, which had
been set up for single switch devices which allow for sequenced multiple
messages. Predictable utterances which are appropriate for a certain situation
are programmed into the device in a way a talking peer would speak about
the event, but in a sequenced mode. The user might not understand every
detail of the utterances he/she is eliciting through the device, he/she is, however, engaged in real communication and is likely to get responses to his/her
utterances which socially are far more appropriate than the usual guessing
game where the non speaking communication partner only has the passive
and the speaker the active role. Social scripts, where the user has to wait for
the communication partner’s answer before eliciting the next phrase, will not
work for a child who is unaware when it is his/her turn to speak and when to
listen and thus does not manage turn taking, including reciprocity in conversation and engagement in a mutual dialogue – a basic difficulty for children
with autism spectrum disorders (Tager-Flusberg, Paul & Lord, 2005).
Another possibility to use sequencing SGDs are what Musselwhite and
Burkhart (ibid) call action scripts; here the user is not telling a message via
the device, but is in charge of an action which likely is fun for peers as well,
e.g., suggesting the next steps during playing or how to be pushed in the
wheelchair. Sequencing devices can also be used to get children more ac77
tively involved in an activity, e.g., making a song or piece of music continue
instead of merely listening. A child with profound and multiple disabilities
may not understand the meaning of the recorded phrases nor may he/she
recognize the messages that are represented via photos or picture symbols in
case an SGD with several locations is used, but it is the non speaking child
whom the others have to listen to, and this child is absolutely in charge of
the activity. Among the children in this study especially Alexander and to a
lesser extent Nadine are using SGDs in a sequenced mode during activities.
While Nadine, however, is able to use her sequencing device with social
scripts as well, this is not true for Alexander who does not manage the process of turn taking yet, but enjoys eliciting lines of a song in a sequenced
mode.
High tech communication aids
Two children in this study, Desiree and Tina, are communicating via high
tech communication aids with speech processing which are based on Minspeak™ and the principle of semantic encoding (Baker, 1982, 1984). This
type of communication aid is described in detail in Appendix 1.
Communication via pictures and symbols
All children in this study are using photos, pictures or symbols with their
communication aids, though in different modes, to represent meanings,
reaching from highly iconic pictures of persons or objects to fairly abstract
representations.
According to DeLoache and Burns (1994), in their first year of life children with typical development are treating pictures like colored objects and
also try to manipulate them accordingly, only around the age of 12 to 15
months pictures are recognized as such. However, 15 months old children
still match picture to picture and object to object when asked what goes together. At the age of 24 months children with typical development are able
to recognize all items on a picture, but not before the age of 30 months are
children able to use a picture as a source of information (ibid).
Symbol transparency
How concepts in general are represented via pictures or symbols has been
the topic of a number of research projects (e.g., Baker, 2004; Fuller, Lloyd &
Schlosser, 1992; Gangkofer, 1993). A symbol basically is “something that
stands for or represents something else” (Vanderheiden & Yoder, 1986, p.
15), but the representative mode of symbols can have a wide range. Generally symbols can be divided into transparent – the meaning of the symbol is
immediately clear, translucid – the meaning of the symbol is clear only after
explanation, and opaque, where there is no connection between the symbol
and its meaning, the symbol is more or less arbitrary (Baker, 2004).
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The majority of the children who participated in the study (Charles, Desiree, Elisabeth, Jan, Moritz, Nadine, Timmy and Sandro) have used or are
still using Mayer-Johnson’s Picture Communication Symbols (PCS, MayerJohnson, 1982, 1985) together with photos and other pictures in their communication. Alexander is using photos or cut outs in addition to his individual signs, Tina had used Bliss-symbols (Adam, 1996; McNaughton, 2003)
before she started communicating via a high tech device. Bliss-symbols are a
graphic communication system, consisting of a limited number of lines and
shapes, originally created to facilitate communication between persons of
different cultural and linguistic backgrounds and have been first used with
non speaking individuals in the seventies of the past century. Examples of
Bliss-symbols as well as PCS are provided in Appendix 4.
PCS, picture symbols designed to represent a wide spectrum of themes,
had originally been created by Mayer-Johnson resulting from the need to
find a communication system for non speaking clients for whom Blisssymbols had not been an option due to cognitive or other reasons (MayerJohnson, 1995). While the at first sight seemingly iconic representation of a
term may be an advantage for persons with limited representative understanding it can become a disadvantage as the vocabulary is expanding. A less
iconic symbol can represent a variety of meanings, special strategies may be
used for clarification, while a picture symbol with high iconicity represents
exactly the person, animal or object it looks alike (Gangkofer, 1993). This
feature of picture symbols becomes even more problematic when it comes to
the representation of non iconic terms – words which do not automatically
create certain pictures in our minds. To solve this problem Mayer-Johnson
(1982,1985) used associations, but these need not necessarily be relevant for
the user. For example is the adjective “slow” in PCS represented by a turtle:
the user might never have had the chance to observe a turtle, and the concept
of the slowly moving animal representing any slow movement is questionable, e.g., in the sentence “the car goes slowly”. Non iconic words, however,
account for a large percentage in our everyday used language (Baker, 2004).
The verb “to need”, which is part of the core vocabulary and generally
appears early in child language development (Marvin, Beukelman & Bilyeu,
1994) may serve as an example: Mayer-Johnson’s PCS (ibid) offer a few
varieties: One is a finger tapping on a table, one a head with untidy hair under a comb, another one is a picture of knees pressing together in the mode
typical for children with cerebral palsy.
The Bliss-symbol representing the verb “to need” consists of a line, representing a person, tilted so far forward that without support he/she soon
would fall down; of course that “person”, only represented by a leaning line,
is a highly abstract image. The underlying concept, however, is not more
difficult to understand than the associations in PCS. Few children with cerebral palsy are able to impatiently tap the table with a finger when they want
something; they mostly get their hair done before they are aware that they
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would need a comb, and not all the children who use a wheelchair know they
need a wedge to keep their knees apart - mostly their seating just is adapted
that way.
Another non iconic, equally frequently used verb is “to help”. While the
Bliss–symbol has a direct connection to the verb “to need” – now the stick
figure who is about to fall down gets a support and thus is stabilized – PCS
offer the following varieties: one suggestion shows the ASL (American Sign
Language) sign for “help”, it could easily be replaced by the corresponding
sign used in a specific country; however, because of their motor impairment
most children with cerebral palsy are unable to produce manual signs and
therefore have never been exposed to signing. Another suggestion with a
kneeling person who obviously wants to be pulled up might be most relevant
for many children. There also is a symbol representing a drowning person
reaching out for help and another one with the symbol for the red cross. How
far the latter suggestion is valid for children with an intellectual impairment
remains unclear.
So a picture with high iconicity need not be easier understood than an at
first sight less iconic symbol. Less than half of the existing PCS are actually
transparent where the meaning of a symbol is immediately clear; the majority of PCS fall into the translucid category and some even are opaque. Once
the words printed above the symbols are omitted the numbers of symbols
which are guessed wrongly by persons without disabilities who are unfamiliar with the system increases dramatically (Baker, 2004). This is not to minor the value of PCS, which for a great number of persons with complex
communication needs help to facilitate their communication. However, in
many cases it is the ability to read the words above the symbols what makes
them appear so clear to communication partners. When a child has difficulties to find a certain symbol on his/her communication board or device - as
for the children in this study it frequently could be observed with Jan or
Elisabeth - one reason might be lack of transparency of the symbol.
Representation of “yes” and “no”
Seven of the children in this study are able to signal “yes” or “no” in a way
that is easily understood also by unfamiliar persons, either via vocalizations
or head movements. Charles uses a vocalization for “yes” and an individual
sign for “no”, Nadine uses eye gaze to look at corresponding symbols on her
wheelchair tray. Alexander is on the level to signal acceptance versus rejection, but has not yet grasped the concepts of “yes” and “no”.
When between 12 and 18 months the child with typical development
starts to walk we can observe a gradual separation of the child from his/her
mother and first conflicts resulting from the child learning the power of the
word “no” (Weigel, Lowman & Martin, 2007; Zollinger, 1995). Children
with profound and multiple disabilities may not understand the concepts of
“yes” and “no”, actually quite difficult and abstract concepts, since neither
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word specifies a concrete object or feeling. Being able to signal acceptance
versus rejection is not identical with the ability to answer yes-no-questions.
When teaching the concepts of “yes” and “no” these terms frequently are
associated with emotions, like smiling for “yes” versus frowning for “no”,
simply because many children with profound disabilities will not be able to
use these concepts in their abstract sense, disconnected from feelings or
emotions (Batshaw, 1997). “Yes”, however, does not automatically mean
agreement; sometimes one does not agree to an unfortunate event at all, but
nevertheless has to answer with “yes” when asked whether it had happened.
Various graphic symbol systems (among others Mayer-Johnson’s Picture
Communication Symbols, PCS, 1982) offer neutral as well as emotion associated symbols for the concepts of “yes” and “no”; Bliss-symbols for both
“yes” and “no” are neutral.
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Results of the interviews
Each interview was conducted following the same questionnaire, although
some answers of the interviewees led to additional questions from my side.
The complete interview guide is presented in Appendix 2.
Before actually conducting the interviews I had organized the questionnaire that served as my interview guide into different categories. That already established categorization made it easier to look for meaning units and
common patterns when I was analyzing the interviews.
To analyze the single interviews I first read each whole interview to capture the general meaning. Afterwards I returned to certain themes to closer
determine their meanings, and then went back to the more global meaning of
the whole interview, but now under the impression of the deeper meaning of
its parts.
When parents gave similar or almost overlapping answers to questions
these are compiled to one answer that best reflects the meaning. Quotations
are included not only for clarification, but also to strengthen certain phenomena.
Since one purpose for this study was to find out whether certain issues related to the children’s communication were the same for parents although
their children were different in their communicative abilities, the next step
aims to highlight common patterns in the interviewees’ answers. Discovering repeated patterns belonged to the most exciting aspects in this study, as
in many instances they appeared in previously quite unexpected areas.
The same principles were applied for analyzing the interviews with the
parents whose children belong to the expressive language group.
Finally common patterns in the answers of parents of children of both
language groups are presented, as they seem to be of special significance for
increased understanding of the parents’ challenges related to their children’s
communication.
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Results of the interviews – impressive language group
The compiled results of the interviews with the parents whose children belong to the impressive language group are presented under separate headings
which are related to the questions the parents were asked.
How do you experience the communication between you and your
child?
Parents explain what they do to facilitate communication for their child.
Emphasis is on special strategies, like reading the child’s body language or
asking closed questions. “When I communicate with Jan I have to ask him
questions that he can answer with `yes` or `no`. Or he shows me with his
mimics whether or not he wants something. You can read it in his face when
he’s satisfied and relaxed; but when he’s getting all tight I can tell that he
wants or needs something.” (Jan’s father).
Two parents experience communicating with their child very difficult. Six
parents report having found a satisfying way to communicate with their
child, but are aware of the differences compared to communicating with e.g.,
siblings.
All parents except Timmy’s mother know situations when communication
with their child is experienced as extremely difficult due to his/her limited
means to express him/herself.
How does your child communicate with you (body movements,
gestures, signing, vocalizations, words or phrases, communication
aids)?
The children use body language, mimics, smiling vs. frowning, gaze or eye
pointing.
Two children nod or shake their head in response to “yes”/“no” - questions.
Five children use vocalizations to express “yes” and “no”, three children use
a limited single word vocabulary, one child has a limited repertoire of
phrases.
Three children are using different modes of signing: adapted ASL (American
sign language)-signs, adapted ÖGS (Österreichische Gebärdensprache =
Austrian sign language)-signs, as well as individual signs based on the
child’s own movement repertoire.
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Is your child communicating with everyone in the family in the same
way when he/she is without the communication aid?
Parents observe a sensibility in their children in judging their communication
partners’ ability to understand them: “She knows very well who is able to
understand her when for example she is looking somewhere, or who understands the words she can produce. Even with dad she has her own way how
those two are communicating, and with children again it is something different.” (Nadine’s mother).
In three families the mothers portray themselves as being more demanding
regarding the child’s communicative efforts (which would be trying to verbalize a word or produce a sign) than fathers, who may be content with eye
pointing instead. “Moritz knows very well by now that with mom he has to
show a little more effort, because she’s not reacting to every `uff` or sign and
so on, but I’m motivating him or try to motivate him by saying `what do you
want? Please talk to me, say the word`, especially when I know he can say it.
And with his dad he knows that when he puts on the `I am such a sweet,
helpless creature – face`, he does not have to speak or sign much, he won’t
need his Tech/Speak, because he takes dad’s hand and leads him where he
wants him, to what he would like to do.” (Moritz’ mother).
Grandparents frequently need interpretation by parents or siblings to understand the child.
How do you communicate with your child (using complex vs. simple
language, accompanying gestures, etc.)?
One mother communicates with her son in the same way as with anyone
else.
Parents use simplified and less complex language and express themselves as
clearly as possible: “I try to talk precisely; so no dialect, but the real precise
German language. When I am alone at home with Moritz and we play, cook,
or do whatever together, then I try to express myself as reduced as possible.
But not in a child’s language, I rather use simple words, no foreign words,
no complicated expressions, quite normal and simple.” (Moritz’ mother).
Parents talk slower when addressing the child.
Parents communicate by mainly asking the child closed questions: “There’s
definitely a difference. I don’t notice it so much in the course of daily life,
but when I think about it, there’s a difference. Insofar, that you need to keep
asking until you get an answer, he needs his time simply because he can’t get
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it out right away. Yes, and you also may speak more clearly. And slower. I
would say the sentences are more precise, more exactly formulated. And as I
said before, only closed questions. Sometimes I put other questions, too, e.g.,
`how was school today?`, because I know he would say `yes`, or you can tell
by his smile that everything was o.k.” (Sandro’s stepmother).
The parents of the three bilingual children mostly use their native language
when interacting with their children. “He always starts laughing when I talk
German to him. He does take it more seriously when I’m addressing him in
Polish. He even starts laughing when I talk German to his brother - this one
respects German more because of preschool. But for Jan it’s not normal
when we are speaking German at home!” (Jan’s father).
Is your child able to communicate to you all his/her wants, needs,
excitements, worries, etc.?
Parents deny that question, with the exception of when they have an idea
what it might be about; first guesses are based on the child’s body language.
The child only has a chance to communicate wants, needs or worries if the
communication aid is available and the child has got an overlay with the
appropriate picture and phrase programmed before, or if the child has got a
sign for a certain want or need. No child is able to express reasons for worries or excitement using signs.
Wants and needs are easier for the parents to understand than worries or
excitements.
“What he wants, what he does not want, all that he can now define very
clearly. When I tell him `please, go and brush your teeth`, which he does not
like because he knows it’s connected with going to bed in the evening, he
says `no, I – no, no`, he goes into his room and might even bang his door, so
in this form he expresses when he does not want to do something. When he
wants something, he usually comes and says `Mama, please`, either with a
word or a sign he makes himself understood. Or he points at an object or
tries to speak the word. With anxieties and worries it’s a bit of a problem
where we still have to work very, very hard, because that’s very difficult for
him. I can only guess whether he has got something on his mind today,
whether something worries him or whether he is angry. But that he really
would tell me he is sad, because …, that is not really the case. That is difficult.” (Moritz’ mother).
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Can your child ask questions?
Three children have no way to ask questions, which is experienced by the
parents as a big downfall in communication. “No, he cannot ask questions,
absolutely not. No way. That’s a very big downfall. I have to anticipate what
he might want to ask and then turn it around and introduce the subject
someway, but no, he’s not able to ask me any question.” (Charles` mother).
The child repeats words he/she is able to speak which is interpreted by the
parent as question. “In this case it is difficult with his communication. He is
able to say `Mama` and `Papa`, so when my wife is away for a short time he
will go `Mama, Mama`, so that’s his way of asking when his mom will be
back.” (Jan’s father).
One child uses her communication aid to ask pre-programmed questions, but
needs prompting.
Parents anticipate possible questions and respond accordingly.
Can he/she tell about an event?
Parents can tell by child’s body language whether he/she is excited or upset;
with sufficient background knowledge parents will ask questions to find out
what might have happened. “I can tell by his facial expression and his overall body language, I would say, that something had happened. Or that he’s in
an extremely good mood and laughs a lot, so then I would ask. But otherwise, no.” (Sandro’s stepmother).
The child is dependent on a communication aid to elicit a pre-programmed
message, but needs prompting.
Also the children with a limited sign vocabulary are unable to reflect on
events outside the here and now.
All parents experience the limitations in their child’s ability to share an event
as a major challenge in communication. ”Well, you would notice if she’s
excited, but in detail – I have to question her accordingly. With `yes` and
`no`. That is always the thing that is most difficult and therefore - somehow
I would like to try something like using the Step by Step together with the
teacher; when something special had happened, or when Nadine has got
something on her mind, that she can tell me about it.” (Nadine’s mother).
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Can he/she express discomfort or complaints other than by crying or
face-/body- movements?
The child has no way to express discomfort other than by crying or body
language (getting tense); one child bites his arm.
The parent reads by the child’s expression that something is wrong and tries
to find out by questioning the child or using appropriate overlays. “I don’t
think he can express pain. He can express frustration in the way he would
vocalize, but pain, no. We are trying to teach him the sign for pain, but he’s
not using any sign consistently for pain. I would have to say `Charles, does
something hurt?`, and if he’d say `yes` I’d assume that he would point to the
correct body part. But he’s not going to come out and tell me `my lip hurts,
my leg hurts, …`, no, he’s not going to tell me that.” (Charles’ mother).
All parents report their children’s difficulties to specify the part of the body
that is causing them pain, if the reason for discomfort is a physical one. Most
children show delayed reactions to physical pain. “It is difficult with physical pain, because he’s not able to localize it. His sensitivity towards pain, or
better his insensitivity towards pain is higher than normal, let’s put it like
that. And when he really is in pain he cannot tell us what’s wrong. Is it a sore
throat, does his tummy hurt or something else. That’s extremely difficult for
us to find out what the problem is. Even when we ask him. I’ve tried several
times, just to make sure what the problem is, that I asked four times `does
your tummy hurt, is it the head, is it your throat`, and I got totally different
answers. `Yes, no, yes, no`, you don’t get a clear picture. For me that’s the
issue in the communication with him which is really difficult.” (Sandro’s
stepmother).
What do you experience as the biggest challenges in the
communication between you and your child?
One parent considers keeping the child’s attention as the biggest challenge in
communication.
Parents express distress when they notice the child’s frustration due to
his/her inability to get a message across. “When I see that she wants something and she’s not able to tell me. And when I don’t understand what she
means, and she’s looking in a certain direction and nods her head a bit, and I
don’t know what she means. Then I ask her this and that and she says `no`,
and then she somehow gets -, then I can observe her giving up if it takes too
long. Then I frequently think wouldn’t it be -, yes, it simply breaks my heart
when I don’t know what she means and she would like to have something. It
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is not that often, but then my desire is getting very big that she could tell me
what it is about. Even if it’s only one word.” (Elisabeth’s mother).
Parents report their own frustration for not being able to help the child and to
read his/her mind. “What is most difficult for me or what is burdening me
most, that is - ah- , that I don’t have access or have not found a way yet that
he opens up his soul a little bit to me. Open up in so far as I might know
something is really worrying him deeply, but I have not found a way yet for
me how I should deal with that, how can I find out what’s wrong, how can
he open himself, how can he express himself towards me. That is what’s
most difficult in dealing with Moritz, with communication.” (Moritz’
mother).
Parents consider the child’s inability to express his/her feelings other than by
body language as a big challenge.
Parents regret the child’s inability to talk about issues apart from the here
and now and to share an event that is unknown to them. “One only can ask
questions according to the situation. And frequently I have to think that she
also wants to tell something about what she HAS been doing, that could
have been two or three weeks ago. Sometimes we may forget something, and
maybe she’s still thinking of it, how she had experienced something, and I
cannot tell it in the same was for her as she might want to tell it to grandpa
and grandma. Maybe for me in that moment it is not so relevant any more,
and for her it still may be important. Sometimes I notice she’s sad, but don’t
know why, and a few times I’ve discovered that she wanted to tell something.” (Nadine’s mother). “For everyone it’s probably what I experience the
same, the challenge being, you know, him not being able to – to tell us what
happened, his wishes, his wants, desires,… we have to formulate the questions to get ´yes´ or ´no´, we have to anticipate. And I think that’s the biggest
challenge. That’s the biggest challenge for all of us.” (Charles’ mother).
One parent especially mentioned the feeling of running out of time regarding
possible improvements in the child’s abilities being a major challenge (“time
is a thief”, as Jan’s father had put it).
Which are the situations when communication between you and your
child works best?
All parents report that mealtimes are situations where communication with
their child is least problematic. They are able to read the child’s expressions
or signs or understand the vocalizations regarding wanting more, having
enough, likes or dislikes, etc. “Mealtimes. That’s when he really, really
communicates, concretely, definitely, that’s always easy. He uses his signs
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to tell us he’s hungry, he wants more, he wants a drink, to tell me it’s good,
the typical mealtime conversation generally works very well.” (Charles’
mother).
Several parents find communication with the child easy when they and their
child have been in a situation together and the topic is known to both communication partners.
Alexander’s mother mentions one-to-one-situations, which are sort of constructed, where communication with her child works well.
Are there differences among various members of your family in regard
to how the communication with the child is experienced / seen?
Parents observe different reactions of close (parents, siblings) and more distant family members (e.g., grandparents) to the child’s communication.
Parents express frustration because of the limited interaction of their own
father or mother (child’s grandparent) with the child. “My mom is treating
Timmy as if he were a little baby. I have no idea whether that is because he
cannot talk so well, but she knows his age and still speaks to him in such a
stupid baby language that I’m telling her `hey, Timmy is not a little child
anymore! Talk to him normally and decently!`” (Timmy’s mother).
“My mother is afraid of those children, she hasn’t got any experience. We
wanted to break that barrier by frequent contacts, but it’s not going to
change. For us my mother is our problem. She’s afraid that he might choke
when children are giving Jan to eat or drink, so that’s difficult. Despite the
fact that my mom had risen us two boys, with Jan it’s impossible, unfortunately.” (Jan’s father).
Where the communication aid is used at home the parents’ emphasis is
mostly on training or allowing increased participation, while for siblings the
fun-factor seems to dominate. “His elder brother has accepted that one can
have fun in a certain way with Alexander, and from time to time he will especially dedicate some time to play with his brother. Yes, and his elder sister
uses a play-like approach as well; sometimes she tries to join in with the
program, but she is so occupied with school that there is only time left for
cuddle-communication.” (Alexander’s mother).
With one exception the mothers report that the father’s interaction with the
child is more on a superficial level than their own. “My husband has got no
patience at all, he is burned out by his job. He just will put him on his lap
while he is watching TV, that’s the communication!” (Alexander’s mother).
“Due to his job Moritz’ dad is not much at home, he’s very busy and more or
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less leaves things up to me. He knows he can rely on me, I’ll do the best I
can, he sees the progress, but that he is contributing a valuable part, that I
have to deny. And therefore also the insight of my husband, his approach
towards Moritz or the situation in general, is not there. So when I say `hey,
Moritz is worried about something, and I don’t know how to deal with that
or solve it`, then my husband might rather say, `well, yes, it will get better`.
Or `you’ll manage`. Or `ah, he’ll get over it`. He’s handling it more superficially.” (Moritz` mother).
Does your child use a communication aid? If yes: high or low tech?
What kind of communication aid?
All children are using communication aids with recorded speech in addition
to other communication forms.
Alexander uses BIGmacks™ and a Super Talker™, four children are using
Tech/Talks™ with eight locations (Charles, Nadine, Sandro, Timmy), Nadine is also using a Memotronic™. Jan uses a Go Talk™ with nine locations,
Elisabeth and Moritz use Tech/Speaks™ with 32 locations. Elisabeth occasionally also uses a low tech communication board with PCS and photos.
For choice making parents sometimes use single pictures, binders with picture collections or overlays without the device.
Three children (Alexander, Charles and Moritz) are using a limited sign vocabulary in addition to their technical aids.
What made you decide for that specific aid? Who was involved in the
decision?
Parents collected information about communication aids on their own via the
internet or brochures.
Parents received counseling through the child’s speech language therapist, at
therapy centers and at information centers for communication and computer
access.
The decision was shared between both parents and the speech language
therapist.
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Were advantages / disadvantages regarding that specific
communication system explained to you before the final decision? If
yes: by whom?
With the exception of Alexander’s mother, whose decision and order based
on own initiative, all parents report that possibilities as well as limits of the
aids had been explained to them by either the speech language therapist or
dedicated counseling centers.
Two parents stress how important it had been for them to be told that the
child would not stop his/her attempts to vocalize when using a communication aid.
How was your child’s technical communication aid financed? Did you
get help in finding ways of funding?
Insurance companies denied reimbursement of the costs for communication
aids.
In some cases the federal social magistracy would cover parts of the costs
unless the aid had already been financed by the parents.
Two parents used donations to cover most of the expenses, but the majority
of parents financed the communication aid on a private base.
When (age of your child), where and by whom was the communication
aid introduced?
To four children the communication aid was introduced during preschool, to
three children during the first grade, and to one child during the second
grade of school.
To two children the communication aid was first introduced by the mother,
to six children by the speech language therapist.
Do you feel that you were trained sufficiently in communicating with
your child using the communication aid?
Seven parents report that they were shown how to use the device and were
invited to observe when the therapist or teacher was working with the child.
In one case it was the parent who had to show the preschool teachers how to
use the device with the child, in six families the parents have found own
ways to use the device outside school or therapy.
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Who chooses the vocabulary / phrases?
The vocabulary that is created in school usually is put on the device by the
speech language therapist in cooperation with the teacher.
Vocabulary that is created at home is situation dependent, e.g., for a certain
game or a special trip. With one exception (Sandro) the mothers are creating
new symbols or overlays. When vocabulary is created at home most of the
children are part of the process as the parent would show her/him several
cutouts, photos or drawings and then let the child decide which one she/he
would like to be put on the overlay.
In case your child was (is) involved: how does he/she indicate to you /
the teacher / therapist, etc. what kind of vocabulary he/she needs for a
specific situation?
None of the eight children has ever indicated that he/she would need a symbol, overlay or sign for a special situation. “No, that’s again were his limitations fall. If I ask him `do you want an overlay that shows this`, he would be
able to say `yes` or `no`, I’m assuming. But no, he’s not able to – and again,
that’s his limitation, he’s not able to tell me what he wants as vocabulary
choices.” (Charles’ mother).
Nadine’s mother takes special efforts to make her child aware of situations
when she could speak for herself by using a dedicated overlay and tries to
include her in creating the pictures for it.
How is the vocabulary represented? Are you able to create new
pictures / symbols / overlays, etc. for your child’s communication aid
yourself?
Vocabulary which is created in school or by the therapist mostly consists of
PCS, photos, cutouts and drawings.
Parents who create overlays themselves use computer programs, digital
cameras, cutouts, and drawings.
One mother reports that her child is especially fond of watching the process
of drawings for her overlay. “Sometimes I print out two or three variations
and let her decide what she would like for a certain situation. It is after all
her device! I believe that also visual aspects are important for her; if she
doesn’t like a picture she will not be able to remember it. She does understand an action represented by a picture, but it is also important how it is
expressed visually. So she needs to take part in the choice. Otherwise you
create an overlay and she doesn’t understand it. Sometimes I draw some-
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thing for her and she’s watching. She likes drawings, and it’s much easier to
explain to her the components of a picture than when I present her a ready
made picture.” (Nadine’s mother).
Is your child using the communication aid on a regular base? (Which
could be just at school, just at home, both, only with certain
communication partners whom the child meets fairly regularly, etc.)
Six of the eight children are using the device regularly at home, though to
varying degrees.
All children are using their device during speech therapy; five children are
using it regularly in class. For two children, who also use signing, that mode
is easier accepted by teachers than the technical aid. For Nadine, who uses a
Tech/Talk at home but needs help to access the desired location, the teacher
would prefer a single switch device.
Only in one case (Alexander) where the child uses adapted signs their use in
the group home meets the parents’ expectations.
Is everyone in your family using the communication aid when talking to
or playing with your child? Are there differences regarding ways and
amount of time the aid is used by various family members?
With one exception mainly the mothers are using the technical communication aid with their children - even if both parents are working -, while for the
children who also use signing that mode is used with all family members.
“Listen, by the time my husband comes home Charles is probably in bed
already. No, it’s my job all the way. My husband has pretty much zero to do
with it, unless when the device is out and I tell Charles to tell dad what he
did today in the group home. And if the program has been recorded already
from the group then Charles will hit the button `this afternoon I went to the
city and ate chestnuts` and then my husband would start a conversation with
him, based upon what he had pressed … Signing definitely is a more regular
thing. And that needs no prompting whatsoever, no, absolutely none, he
produces his signs spontaneously and in the same amount with everyone in
the family.” (Charles’ mother). “The signs are used by everyone, the Supertalker is less. Well, my daughter, when she is playing with Alexander, she
does use it, she also has recorded songs, but my other son uses it less. Neither does my husband, but the signs, yes, those he is asking from Alexander.” (Alexander’s mother).
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In Jan’s family where the device is used by both parents the mother’s focus
is on training the child’s abilities to use the device and to practice for school,
while the father rather uses it for leisure activities.
In families where the child has siblings (e.g., Alexander, Elisabeth or Jan)
parents report their great interest in the communication aid when they are at
a younger age or the aid is still a novelty. Their willingness to engage with
their sibling using the aid, however, decreases when they reach puberty and
also is limited by increasing school demands.
In one case (Jan) the parents report that the younger brother, who is speech
language delayed, profits from recording his speech into the device as well.
Most parents regret the resistance of grandparents to use the device with the
grandchild. “They’ve got difficulties with that thing! They always think it’s
too time consuming, too complicated, they do not know how to operate it, it
takes real effort to convince them! They are scared and embarrassed to talk
into the device, or they cannot think of something what to say for Nadine. I
really have to fight that they use it at all! Sometimes I don’t even pack it
because I know they are not going to use it anyways.” (Nadine’s mother).
Which are the situations your child benefits most from using the
communication aid? What are the advantages for your child when
using the communication aid as compared to being without the aid?
Parents report the child’s increased participation during games, when the
child has a voice of his/her own instead of only responding to questions.
“She’s now able to play simple tactical games, and can tell for herself what
she wants to do now, and there’s no need to ask all those stupid questions or
guess where she’s pointing at.” (Nadine’s mother).
Parents report the child’s independence in starting an action (when the device also is used as a switch, which is the case for Alexander) or conversation and making requests. “I think he personally benefits the most just by
using his device as a communication tool, so he’s able to tell me what he did
in school today, and I’m able to ask a question. And that’s the point, it starts
with him! HE starts the conversation, HE initiates the conversation, instead
of ME initiating it. And that’s, I think, a great benefit. And you should see
the way he gets excited when he’s able to use the Tech/Talk.” (Charles’
mother).
The communication aid facilitates active choice making, e.g., to pick a song,
choose among activities or among food items in a restaurant. “We take it
with us to T. where we often drive up for lunch, where the waiter who knows
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Nadine directly asks her what she would like to drink, and there she uses this
overlay with all the different beverages. Or for R. (a restaurant) she’s got an
overlay with desserts, and the waitress comes up to her to ask her, she already knows that. We’ve also made her a location where she can answer
whether mom is allowed to have some wine today…There it is seen positively. We do get puzzled reactions, too, but then you have to explain what
it’s used for, that we try to give Nadine a voice through the device.” (Nadine’s mother).
Two parents report a gain in their children’s self esteem when they are able
to speak for themselves. “When I observe her I can see her smile when she
managed to press the targeted location. One has to really watch her. And
when she’s enjoying it, it’s an encouragement and joy for me as well. It’s not
like she would scream `hurray` , it’s simply a smile: `I’ve succeeded now`.
That’s what’s so nice, those little things. And then I think it’s worth it to take
the pains and work with her. Well, there are other occasions when she’s enjoying herself, too, but they mostly depend on others. But that comes from
herself, she’s proud of it, and she shows it.” (Elisabeth’s mother).
Are there situations when your child hardly or never uses the
communication aid? What would be the reasons for not using it?
One mother would not exclude any situation, except emergencies.
One child rarely uses her device when interacting with other children outside
school (Nadine’s mother: “they have their own way of communication”).
Two families (Sandro’s and Timmy’s) never use the device at home, although the children are unable to sign and only have a very limited repertoire
of verbal utterances. “It is by far easier to just talk to him, because I ask my
closed questions and get the response `yes` or `no`. And with that we’re doing fine.” (Sandro’s stepmother).
One family hardly uses the communication aid during holidays, as using the
device is perceived as part of school work. “There are certain times when the
GoTalk is used, it belongs more to school. Jan knows that he doesn’t need it
when he’s at home. For example during holidays, around Christmas or so,
when we take a few days break from school, we are not using it.” (Jan’s
father).
Communication aids are not brought along on holidays due to the increased
risk of damage: “First because of the temperature, there I’m afraid that it
might be too hot or too cold which could impair the device, and also regarding the size it would be an obstacle. And because it is also – let me put it this
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way – a thing that actually belongs to the school, I’m afraid it might be stolen, we could forget it somewhere, all those things could happen, and then
I’m rather inclined to leave it at home.” (Moritz’ mother).
“I don’t take it with me. I’ll be honest with you, I don’t take it with me. It’s
another thing to pack, another thing to lug around –” (Charles’ mother).
Only Nadine’s family brings the device along on holidays away from home.
Do you feel your child’s communicative ability aside from verbal
speech is improving by using the communication aid? (Initiating a
conversation, turn taking,…)
One mother reports increased eye contact when she is using the device with
her child. “His communication is definitely improving, also his eye contact,
just that he’s interested in other persons and not only remains inside his own
thing, there the communication aids for sure have helped him. He also is
interested in what is coming out of the mouth, but unfortunately is not able
to produce it himself.” (Alexander’s mother).
Three parents report that their children are more precise in their choices than
by just responding to verbal questions.
Two parents see a direct connection between the child using a communication aid and his/her change in social behavior in the sense of having become
more open and self confident: “When I’m talking about the time between
one and a half years ago until now - at the beginning of his schooling Moritz
was behaving very quietly, had kept his distance and hardly ever had approached anyone. And when I look at him today, now he chooses the children, he chooses what he wants to play with that child, what he wants to do
in general, that has developed step by step.” (Moritz’ mother).
All parents report that turn taking is a difficult issue: children need to be
reminded to listen for an answer first before they aim for the next location on
the device. “She does have a tendency to listen, but then she tries to immediately press another location. Then I have to say, `Nadine, you just made your
statement, now it’s my turn!` That turn taking is difficult for her. Often I ask
her something and she gives an answer, but then she immediately goes on
without waiting for my reaction.” (Nadine’s mother).
“I think there are certain things about communication that Charles doesn’t
quite understand. Like just last night, the three of us were eating dinner, and
I was trying to talk to my husband, but Charles was vocalizing the whole
time. I’m not sure he really understands that when two people talk the next
person is supposed to be quiet! When I’m talking to him, then dad’s supposed to listen, I’m not sure he got that part … I guess that’s what a conver96
sation is, which is knowing when to interject, knowing when to hold back,
knowing when it’s your turn, and I don’t think he’s got that yet.” (Charles’
mother).
All children initiate conversations rather by eye gaze, signing or vocalizations than by using the device.
Do you notice an increase of verbal utterances / vocalizations when
your child is using his/her communication aid?
Most children have been observed to vocalize along with the voice output of
the device, although that seems to depend on their physical constitution. “It
varies: sometimes she would babble more, another time nothing at all. That
also depends on the situation. If she has to think a lot then she doesn’t seem
to have the energy to babble, you can tell that by her body position.” (Nadine’s mother).
For two children the parents report that occasionally they even are trying to
repeat words which they are eliciting via the communication aid.
Jan, who rarely vocalizes while operating the device, which is explained by
the parent by his difficult motor situation, is reported to smile or laugh out
aloud after eliciting a desired message.
Do you feel using the communication aid facilitates your child’s
communication with peers or his/her overall social inclusion?
With the exception of two parents, who had not used the communication aid
in public yet, parents report that the communication aid facilitates their
child’s social inclusion and helps to break barriers and to keep conversations
going. “Children are very interested in it. Jan notices that the others are interested, but he makes sure it’s his thing.” (Jan’s father).
For the children whose parents have not been using the device in public, the
teachers report an increase in participation possibilities when the child is
using the communication aid within the classroom. “In my opinion one advantage for Timmy definitely is that in situations like the morning circle or
during various games together with other children in his class he also has the
chance to bring in the communication mode of `active communication` and
so from the social aspect is a bit more `like them`.” (Timmy’s classroom
teacher).
Communication aids are highly accepted by peers in classrooms.
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Do you allow / encourage other children to use your child’s
communication aid? If yes: why? If no: why not?
With one exception parents are encouraging other children to use their
child’s device, e.g., during play activities, as they view it as a step towards
inclusion. “It is only positive when they try to work with Elisabeth. Or when
they ask and I explain it to them, what I’m doing and so on. First comes curiosity and interest, and it is not something one has to hide. There are no
problems whatsoever. They may press, and Elisabeth may laugh, if it’s not
correct, that can be quite funny.” (Elisabeth’s mother).
One mother is hesitant to let other children use the device due to the risk of
breaking it, although that family never uses the device at home. “I’m always
a bit sceptical with those things because things break so easily. So it’s not an
easy decision. It’s no problem just during a game or so, but for a longer period ... When something is broken it’s gone for an eternity, and we have got
to pay for the repair. And insurances pay less and less, that’s why I don’t feel
good about it.” (Sandro’s stepmother).
Nadine’s mother even sees it as a “missionary task” to show others that those
devices are existing and what they can do for children.
How do you experience the reactions of the public to your child’s
communication aid?
With the exception of the two families (Sandro’s and Timmy’s), who had not
used the communication aid in public yet, all parents report generally positive reactions, but also a great deal of curiosity from people who had not
been confronted with similar devices before.
Parents report a greater openness in children regarding expressing their curiosity about the communication aids, whereas adults tend to look, but are
hesitant to ask questions. “The positive thing is, when we are eating out or
so, no one has ever complained that Alexander is sitting with us in the restaurant. One often gets to hear `my God, what a hard fate you have`, and I
think, `o.k., that does not really help me`, but it is meant kindly! On the
playground, oh well, there are small children who are approaching Alexander and then are imitating him by for example also sticking grass into their
mouth, but they wait at the slide till he has made it down, because that’s
always very cumbersome. The children gaze at him, and the adults look
away or are touched. Children still act much more naturally, if they are allowed to. But if not, they look away, too.” (Alexander’s mother).
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Two parents of older children stress the positive change in public reactions
towards aids for persons with special needs in general over the past years. “I
find that the public is reacting great now. Compared to earlier years it’s now
a lot easier to be out in public with a disabled child and such – let’s say –
unusual devices. They are very open, and dealing with them is not as unpleasant and difficult as it used to be. Before it often was very, very difficult.
But now thanks God I can say it has become a lot more pleasant. People
know better how to deal with the issue. Thanks God it has become that way.
Overall life out in public with a disabled child has become easier.” (Elisabeth’s mother).
Tell me about the support you are getting or missing from society in
regard to your child’s communication needs:
Although two parents were successful in having most of the costs for the
technical aid covered by donations, all parents mention the lack of financial
support regarding communication aids in Austria, especially the refusal of
insurance companies to reimburse the costs.
Parents miss easily accessible information sources and criticize the need to
collect most of the information themselves, especially when the child’s first
speech therapist was not trained in AAC. “I had been aware before that there
are communication aids, but nothing concrete, not even from therapists, neither the speech- nor the physio therapist. The speech therapist had tried pictograms, black on white, but without speech output; she had just learned
about it somewhere, that was definitely too much for Nadine and after a
while she didn’t like to go there anymore. She had said that Nadine would
need a communication device at some point of time, but she did not know
what was available, because that area was all new to her.” (Nadine’s
mother).
A big burden for parents is the need for constant reassessment when a new
aid needs to be purchased. “The support is like that, when you go somewhere, e.g., to the federal social office, at first everything looks quite fine or
even very fine, nice, friendly and helpful. But in the end it takes months.
You have to call again, write again, ask again, nothing comes easily. And
what I experience as a real burden: the boy has got a disability which is not
going to improve, he’s in the highest level for nursing money, and when you
ask for something you’ve got to prove over and over again that he has got
that disability. I’ve got to run from Pontius to Pilate, let him be evaluated a
thousand times, all based on the same diagnosis. And that is so unnecessary
and takes so much energy. The boy is getting heavier, he’s got that disability
which is I don’t know how often documented, that’s not going to change
anymore. And I have to prove it again and again, go to the doctor who again
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has to check the boy and write a diagnosis – that I experience as burden and
as unnecessary. I mean, you’ve got enough to do already.” (Sandro’s stepmother).
Summary of the parents’ answers (impressive
language group)
To find out whether parents are facing similar challenges related to their
children’s communication, although their children differ in their communicative abilities, this chapter focuses on common patterns in the interviewees’
answers.
When asked what they experience as the greatest challenge in communication with the child parents grief the fact that the child is unable to talk
about an event that is unknown to them, to share experiences and expectations. Other difficulties are the child’s inability to explain feelings other than
by bodily expressions and the child’s inability to indicate sources of physical
pain.
All families agree that mealtimes are the situations when communication
works best, when the child’s expressions, signs or vocalizations are clear in
their meaning.
There is no correlation between the severity of the child’s cognitive
and/or physical disability and the frequency or regularity the communication
aid is used at home. The child’s ability to produce a limited repertoire of
verbal utterances or signs does not necessarily lead to the technical communication aid being used to a lesser degree.
Regarding differences in the use of the communication aid at home is fathers using the communication aid with their children less or not at all explained by their challenging jobs, coming home too late and having too little
time. The interest of siblings in using the technical communication aid tends
to decrease with their age.
Parents’ desire to see the child’s device used outside the family is
independent of whether or not it is used within the family. Parents express
high satisfaction if the communication aid is used in school / in the group
home. Similarly, parents express frustration if the communication aid is not
used by teachers / care givers despite their and therapists’ efforts.
There is a difference in the use of manual signing and picture based low
or high tech communication aids: If a child is using signing in addition to a
picture or symbol based aid (board or technical device), signing is used more
consistently, with more family members and is initiated more spontaneously
by the child. While using the technical communication aid mostly is considered working with the child, using signing is perceived as communication
without the association of work or training. None of the children uses the
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technical communication aid to initiate a conversation, while two of the
children who are also able to produce a limited sign vocabulary are reported
using signs to initiate communication. For the two bilingual children who
use signs in addition to technical communication aids signing is used with
both languages, while the technical aid is mainly recorded in German, the
language the children are using in school and during therapy sessions.
Results of the interviews with Desiree’s and Tina’s
parents – expressive language group
The interviews with the parents whose children belong to the expressive
language group were conducted following the same interview guide as the
interviews with the parents of the children belonging to the impressive language group and analyzed following the same principles. The interview with
Desiree’s parents was exceptional in so far as it was the only one were both
parents were present for the interview. Some questions were answered by the
father only, others by the mother, but the majority of questions were answered by both parents, reflecting their individual standpoints. In the transcript of that interview I used different colors to specify both the father’s as
well as the mother’s answers.
The results for this group are presented in a slightly different mode to facilitate reading.
Questions regarding the communication with the child
When answering the question how parents are experiencing the communication between themselves and their child in general three parents report it as
being vivid, though not necessarily connected to verbal language. While
Desiree is able to intelligibly speak a few words Tina uses certain situations
to bring up a topic, like conversations of others or TV-programs.
To communicate with their parents both girls use a mixture of sounds and
gestures as well as pointing when it is about something concrete.
Desiree prefers gestures and individual signs even for issues she is able to
verbalize, unless the parents insist on her trying to get the message across
verbally.
Regarding the child’s communication with other family members Desiree’s parents cannot see different communication modes towards family
members or others who know her well, but emphasize her being a lot more
tense and nervous when she needs to explain something to strangers.
Tina is observed to use her voice more with her younger brother than with
any other family members, especially in cases when he is going over the
limits. Her mother also reports her trying less hard to get a message across to
her father due to his overall difficulties to understand her.
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Both Tina’s as well as Desiree’s parents report to communicate with their
non speaking daughters in no way different than with their siblings, as in
both cases early on it had become obvious that the girls, though not using
speech themselves, were able to understand what they were told by their
parents.
When reflecting upon the question whether the child is able to communicate to the parents all her wants, needs, excitements, worries, etc., Tina’s
mother reports that when her daughter really wants to share a message she is
able to do so, although she frequently withholds issues that are troubling her
to avoid the risk of hurting others. (Tina’s mother: “she is too diplomatic”).
Desiree’s parents are facing increasing difficulties to understand their
daughter when it comes to emotional issues, especially now during puberty.
“Of course we know when she’s feeling well now, or when she’s a bit sad
because of something, that we know. But whether we exactly understand and
interpret a message in the way she meant it, that I’m not sure about. You can
tell a lot by the sound of a voice how a person is feeling, and I think that area
is a bit missing with her, although she compensates a lot by her body language.” (Desiree’s father).
Both Desiree’s as well as Tina’s parents hesitate before answering the
question whether the child is able to ask questions. While Desiree uses vocalizations which are interpreted by her parents as a question, Tina uses media (e.g., a calendar in case she wants to ask about the date for a certain
event) in addition to a questioning gesture.
When asked whether the child is able to tell about an event both Desiree’s
as well as Tina’s parents agree. Desiree tries first with words, sounds, gestures, sometimes drawings or even with spelling; only when that does not get
her anywhere and it is extremely important to her she would refer to her
talker. Tina uses the talker to give her mother clues who then guesses the rest
of the story.
When answering the question whether the child is able to express discomfort or complaints other than by crying or face-/body- movements the parents
of both children report that they are able to indicate sources of pain by mimics, posture and pointing, are able to distinguish between physical and emotional pain and are able to judge whether it is serious to a point that something needs to be done about it, or whether it will become better without
someone interfering.
Desiree’s parents regard the fact that in their presence Desiree prefers using them as her voice to expressing herself to others whom she is less familiar with as the biggest challenge.
For Tina’s mother the biggest challenge is Tina herself giving up after a
while when she cannot make herself understood. “And when she builds up
that barrier it’s difficult since I don’t know whether she doesn’t want to tell
me something or whether she is not able to do so.” (Tina’s mother).
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For both Desiree’s as well as Tina’s parents communication works best
when it is about issues at home within the familiar frame, especially during a
ritualized context (e.g., in Tina’s case the regular family dinner at five p.m.).
When reflecting upon the question whether various family members have
different views on and react differently to the child’s communication Desiree’s parents report one uncle and one aunt having difficulties with their
daughter’s communicative situation. Since their behavior is noticed by Desiree the result is a withdrawal towards these relatives from her side; among
close family members, however, the parents cannot see any differences.
Tina’s mother notices big differences in the reactions towards Tina’s
communication: Her grandparents bridge the gap resulting from the missing
verbal communication on Tina’s side by constantly talking and offering her
various opinions on different topics to give her the opportunity to show her
agreement or disapproval. Similarly, when she is staying with her father, he
is the one to bring up and suggest topics, where Tina then can join in or refuse her participation.
Questions regarding the child’s communication aid
Both girls use a high tech communication aid (Power Talker™) with synthetic voice output based on the Minspeak™ strategy. Before she got her
talker Desiree first had used a board with Picture Communication Symbols
(PCS), later a PCS album; neither of them is used currently as Desiree is
considering them not being “cool” enough. When the PCS album was Desiree’s only communication aid it became increasingly difficult to meet her
vocabulary needs, while the talker allows for a wide range of vocabulary.
Tina had used a Bliss board before she received her talker, but according to
her mother there was no time when both systems were in use simultaneously; the talker had simply replaced the Bliss board.
For Desiree’s as well as Tina’s parents it was the wide range of possibilities (speech output, access via icons as well as spelling, computer compatibility) that lead to the decision to purchase the Power Talker™. Both parents
consider the speech output being a big advantage: “When she had it for a
trial period and we were sitting together during lunch, via the talker she said
words like `yes, no, please, thank you`. Somehow she gets those things
across without a device, too, but the message reaches you on a different
level. It also reaches me differently. It makes such a difference when you
hear `I want a Coke, please`, or `can I have a snack, please` or something
like that; that is coming across totally differently compared to when she just
reaches out with her hand and utters her `aa`. That’s always such a demanding sound, it always sounds like criticizing. You always get it on the level of
critics, at least I do. Like `you still don’t know that I’m hungry?`. With her
few sounds she’s unable to formulate it like a question. But when she says it
with the device -, or even hearing a simple `thank you`. That is a totally dif103
ferent level. You are happy and think `ah, super`. That’s such a relief compared to always just hearing those blurred sounds.” (Tina’s mother).
For both families it were their daughters’ speech therapists who had suggested the Power Talker™ after a trial period of other devices.
Since both Desiree and Tina are ambulant portability and durability were
important factors.
Regarding advantages as well as disadvantages of that specific communication system having been explained to the parents before the final decision,
both families had received information by the speech therapists as well as
the firm’s counseling person. Desiree’s parents also had used the Internet as
source of information and met with another family whose son was using a
similar device.
As the Power Talker™ is considered a high tech communication aid ranging in the upper price class compared to other technical communication aids
the question of financing the device was a major issue for both families. The
majority of the costs for Desiree’s as well as Tina’s device was covered by
various donators and support funds, the rest had to be covered by the parents
themselves. While for Tina it had only taken half a year from the time when
the family started to collect for the purchase till she had the device at home,
for Desiree that process had taken two years. Her order had fallen into the
phase when the device proceeding the Power Talker™ (the Delta Talker™)
was not produced any longer and its successor was not yet available in Austria. Due to that delay the family had lost their major sponsor and had to start
collecting donations all over again.
Both families had received suggestions from their children’s speech
therapists as well as from counseling institutions where they could turn to for
financial support. While in Desiree’s case the insurance refused reimbursement of even parts of the costs, a special fund connected to Tina’s insurance
covered a small amount of the total costs for her device.
At the time when the technical communication aid was introduced Desiree
was eleven and in her second year of middle school. The aid was originally
introduced by the vendor’s counseling person, the following training was
provided by the speech therapist and the special teacher in Desiree’s class.
Tina was fourteen and in her last year of middle school. Again, the aid was
originally introduced by the vendor’s counseling person, all further training
was provided by Tina’s speech therapist.
Both families had received information on how to use the Power Talker™
at home. Tina’s mother had received suggestions for using the talker to e.g.,
play games, but admits never having used those as Tina is not too fond of
playing games. Similarly, although unlike Tina Desiree enjoys playing
games, her parents preferred the “trial and error - approach” to get familiar
with the device to using designated training material: “I just was curious and
didn’t really practice with Desiree at home, but just tried out which words
we would get using certain combinations. Obviously my thoughts were too
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complicated, but she was very quick with the combinations.” (Desiree’s
mother).
For Desiree it mostly is her teacher who suggests to program new words
into the talker, depending on themes of projects. Desiree herself has not yet
indicated that she would need a new word for a certain situation, but shows
her agreement or disagreement when either her teacher or parents suggest to
program and store a certain word.
For Tina the need for new words might also arise during conversations
with her mother, e.g., when a certain topic is coming up to which she is
missing words or phrases. Tina clearly indicates that she wants a certain
word programmed into her talker by pointing to the device during a conversation. It also is her who determines the sequence of icons, so the associations are meaningful to her.
As both girls are using the same device their vocabulary is represented in
Minspeak icons and combinations of those (see Appendix 1). When expressing themselves via the device both Desiree and Tina are using the Minspeak
icons as well as letters when they are using the alphabet mode.
Tina uses the slide ledges behind certain icons (access via touch screen)
more than Desiree does.
Both families are able to program new words and create new icons; for
Desiree this job is done by her father, for Tina by her mother.
Questions regarding the use of the communication aid
Desiree regularly uses the Power Talker™ in school, but rarely at home for
spontaneous communication with family members (only when she wants to
share a message which is important to her and is unable to express herself
otherwise). As Desiree is using the device at school and sometimes afterwards in her group home and during speech therapy her parents report that
she simply is too tired when she finally gets home to communicate via the
Power Talker™ and thus chooses modes that are easier for her, like sounds
and gestures. Situations when the device is used at home usually aim for
training and need prompting through the parents. In Desiree’s family the
father has taken over the technical part (e.g., programming new words),
while the mother practices with Desiree in a playful mode (e.g., memorizing
sequences). The brothers have fun trying out new combinations, but realize
that it is an area where Desiree is superior to them and thus leave it to her.
Tina used to regularly communicate via her Power Talker™ in school;
due to a change in the classroom structure in the year of the interview the
device is not used on a daily base any more. Tina uses her device with her
mother to give her clues about a topic, but also occasionally with her siblings: with her younger brother to send him with messages to their mother,
with her sister to chat about things their mother is not supposed to hear. In
Tina’s family it is a tradition that everyone meets around the dinner table, a
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time when not only the daily events are discussed, but also topics in newspapers. According to the mother that routine allows Tina to share most of her
messages and suggestions without the help of her device.
At home the Power Talker™ is always put up when Tina is at home by
herself to allow communication with family members via the mobile phone.
The possibility to use the phone is considered a big advantage of the speech
generating device over the previous communication board by Tina’s mother.
When asked to specify situations where the child benefits most from using
the communication aid both parents agree on school being an area where the
child profits most from the Power Talker™. By using such a complex communication technology Desiree is perceived more competent by persons who
do not know her well. “We believe that since Desiree is using her talker she
has become more self confident towards strangers. It also seems that it’s
easier for her to get in touch with people, because they are curious what
she’s using to chat.” (Desiree’s father).
Although Tina already was a competent Bliss user when she entered
school her mother still recalls the change the high tech SGD had brought
about regarding her position in class: “Last year it was such an euphoric
experience for her that for the first time she could experience school in a
way others already do in first grade: I know something, I can rise my hand, I
can answer and one listens to me.” (Tina’s mother).
When asked to specify situations where the child hardly or never uses the
communication aid and to provide possible explanations Desiree’s parents
report her rarely using the device in her close and well known environment,
where her communicative attempts usually are interpreted more or less correctly without the aid. The parents also consider it unpractical to always take
out the communication aid and place it somewhere.
Tina’s family never takes the talker along on holidays, the reason being
the restricted space in the caravan and the danger that the device might fall
down and break. The mother also reports the need for the device being less
urgent when they spend the whole day together and events can be discussed
immediately.
The two families respond differently to the question whether parents feel
their child’s communicative abilities aside from verbal speech are improving
by using the communication aid. While Tina’s mother cannot observe a
change in her daughter’s communicative behavior since she is using the
Power Talker™, Desiree’s parents notice an increase in their daughter’s
overall communication: “She shows a lot more communication of her own.
Due to the immediate feedback of the device she gets the o.k. right away that
she actually said what she meant to express.” (Desiree’s father).
Similarly, when asked whether parents notice an increase of verbal utterances or vocalizations when the child is using her communication aid the
question is denied by Tina’s mother, while Desiree’s parents report both an
increase in Desiree’s vocalizations as well as an improvement in her verbali106
zations. The parents relate those improvements to the voice output of the
device and the continuous learning simply by using the communication aid.
Regarding the communication aid facilitating the child’s communication
with peers or her overall social inclusion Desiree’s parents report that while
the high tech device had facilitated communication with peers at the beginning, which the parents associate with their curiosity, it seemed to play a
lesser role once the classmates got used to the device. With adults, however,
the use of the communication aid clearly facilitates getting in touch and carrying on a conversation: “Many have the impression that when the communication partner does not speak she might not understand either, so what
should they say to her. But when something’s coming back from her part
they realize ‘ups, she does understand me anyway!’ And the device is her
voice in a way. Even though it’s a mechanical voice: humans are programmed to listen to a voice. That’s the main factor in communication, a
very important one, I believe. And you can break that barrier when you hear
a voice coming from the other side.” (Desiree’s parents).
Tina’s mother reports that children generally have no problems to cope
with Tina’s lack of verbal speech once they were informed that she is able to
understand them, while adults clearly benefit from Tina using her talker: “It
makes it easier for adults. A lot easier. Only children act in that easy, uncomplicated way. Just with adults now we frequently have the problem that
they ask ‘what should I do now?’ They all want to press the keys themselves! I always tell them ‘you don’t have to do anything, because Tina can
hear you! She understands what you’re saying, you just need to be patient,
either you read along while she formulates her message or you wait till she’s
finished and speaks it out.’ Then they mostly are relieved and ready to accept it and give her time. That’s what’s most important: to give time. That’s
what people need to be told.” (Tina’s mother).
When asked whether they allow or encourage other children to use their
child’s communication aid both parents leave it up to the children to decide
who may try to speak via the device. Both are confident that the children are
aware of the talker’s sensitivity and for example would not let anyone who is
not familiar with the device enter the technical part.
When asked to comment on the reactions of the public to the child’s
communication aid Desiree’s parents report frequent reactions of curiosity.
Both relate it to Desiree’s open personality and her ability to approach other
persons physically that these generally find it easy to establish contact with
her from their part as well. They see, however, a big potential of speech generating devices for persons with severe physical limitations who are less able
to approach others on their part.
Tina’s mother observes relief in others that now it is easier to understand
what Tina wants to express. However, since there are a many situations
when Tina has not got her communication aid with her, for Tina’s mother it
is difficult to tell whether others are encouraged to communicate more with
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her when she is using the communication aid versus when she is without the
aid.
When asked to reflect on the support parents are getting from society in
regard to their child’s communication needs both families are expressing
high satisfaction with the services which are available for persons in need of
special support on one side and frustration regarding financial issues on the
other side. Desiree’s parents have experienced difficulties regarding the level
of the federal nursing money they receive for their daughter because of doctors who were unfamiliar with Desiree’s disability and yet were to decide
about the level she was granted. On the other hand they express great satisfaction with all institutions Desiree has attended so far, be it schools, the
group home or therapies that were provided within the institutions.
Tina’s mother reports that support definitely is there, but that one needs to
collect information and know how to apply. Tina especially enjoys assistance for leisure time activities. Her mother also acknowledges financial
advantages which are offered to her being a single parent. She admits, however, that without the donations that had been organized and collected by the
local community purchasing the high tech communication aid would have
been a financial problem for her.
Summary of the parents’ answers (expressive
language group)
This chapter focuses on common patterns in the parents’ answers to the interview questions:
Both families experience their child’s communication as vivid, independent of the child using verbal speech or the communication device. This experience seems to be based on the children’s abilities to follow the communication of others and participate via sounds or gestures.
Parents report no difference in their communication with the non speaking
child compared to the speaking siblings, as they had noticed early on that the
understanding of spoken language was largely unimpaired.
The children are able to share an event with their parents by using various
communicative modes other than verbal speech as well as the communication device, but parents report difficulties when it comes to precisely understand the child’s emotional situation.
Although none of the children is asking questions in a usual mode, their
intent to ask a question still is obvious to the parents who respond accordingly.
The children are able to localize sources of pain and to distinguish between physical and emotional pain.
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Parents report that communication works best within a familiar frame and
when it is about family related issues. They also report different ways to deal
with the child’s communicative deficits by various family members, which is
reflected by the child’s different reactions.
Both children currently are using a Minspeak™ based high tech communication aid. In both cases it had been the speech therapist who had suggested to try that device. Both children are using the communication aid on a
regular base, although for Desiree the emphasis is on the use in school and
for Tina on the use at home. Parents are able to program new words and
create new icons if needed. None of the children continues to use the previous low tech communication aid. The parents appreciate the wide range of
possibilities the device is offering and especially stress the importance of
speech output. They report the child not only being perceived more competent by others, but also to be more like others by being able to provide verbal
answers. Parents suspect that especially with adults the device has a facilitating role in starting and keeping up a conversation, while with children and
peers the child’s communicative limitations seem to be of less importance
when it comes to participation and social inclusion. They also observe differences in how (and if at all) the communication aid is used with various
family members. Parents leave it up to the child to decide who may try using
the device. They trust in their child’s competence to know about the technical sensitivity.
In both families the majority of the costs had been covered by donors and
support groups; there was, however, a big difference in how long it took to
get the majority of the costs covered.
Comparisons in the interviews with parents of children
from both language groups
As can be seen in the descriptions of the children who participated in this
study, the communicative abilities of the children belonging to the impressive language group compared to the children who fall into the expressive
language group differ considerably. Consequently I assumed that the parental experiences and challenges related to communicative issues which the
parents are facing would be equally different. As it turned out, however,
despite of the differing needs of the children, there still are common patterns
in parents’ answers to certain questions. These common patterns seem to be
related to the dominating phenomenon of the children not being able to communicate in a typical way, independent of how well the children are able to
compensate their communicative deficits by using other means of communication.
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Situations within a familiar frame and family routines are the ones when
communication between parents and child is least problematic, when the
child’s expressions, signs or vocalizations are clearest in their meaning. Especially mealtimes seem to be the situations when communication works
best.
For all parents wants and needs are easier to understand than worries or
excitements. All families report difficulties when it comes to precisely understand the child’s emotional situation, no matter how simple or sophisticated the communication aid is which the child is using.
Parents express high satisfaction if the communication aid is used in
school / in the group home. Their desire to see it used outside the family is
independent of the amount of time and frequency the communication aid is
used within the family.
All parents feel that the communication aid facilitates their child’s social
inclusion and helps to break barriers and to keep conversations going. The
two families who are not using the communication aid at home acknowledge
its merits with people who are less familiar with the child. Parents report
generally positive reactions, but also a great deal of curiosity from people
who had not been confronted with similar devices before. In this case curiosity is perceived positively, as it frequently seems to help to break barriers.
Most parents stress that peers find it less difficult to cope with the child’s
communicative limitations than adults, who find communicating easier when
the communication aid is used.
Parents are aware of the different ways to deal with the child’s communication problems by various family members and as a consequence the child
responding differently as well. Most parents openly grieve the fact that their
own parents (the child’s grandparents) are less at ease in dealing with the
child than persons from outside the family. Without exception all interviewees were mentioning one or more family members who never would use the
communication aid when interacting with the child, or where the communication aid never is brought along in case of a visit since it would not be used
anyway.
All parents express frustration about insurance companies denying reimbursement of communication aids and the need to actively search for possible donors.
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Discussion
As this study is based on qualitative research interviews the controversial
standpoints related to this type of research need to be addressed.
In a next step, based on the parental statements in the interviews, I will answer the research questions as they are formulated in the aim of this study. In
addition, other issues which had come up during the interviews will also be
discussed, as they seemed to be of importance for the participating families,
e.g., the reaction of family members to the child’s communication.
As three children in this study are coming from bilingual families aspects
related to this special situation will also briefly be addressed.
The appropriateness of research based on interviews
“The purpose of research is to give reasonable explanations of behaviors and
tendencies in society, to highlight people’s different situations, and to report
on different cultures and ways to live.” (Brodin & Renblad, 2000, p. 151).
Case study- or interview research fits situations where the boundaries between a studied phenomenon and the context are not clearly evident, that is,
where one would ask a “how”- or “why”- question about a phenomenon
(Yin, 1994). It may provide a methodology that enables the investigation of
complex systems in real life and can be used to focus on intervention processes that are not easily explored in experimental studies. It also can be
seen as a pre-experimental approach to generate hypotheses which can be
evaluated in future controlled studies (Schlosser, 2003). Case study research
is appropriate when variables are difficult to define, when processes are in
the center of the studies, or to offer suggestions to readers who find themselves in a similar situation. It can aid clinicians or therapists in reconceptualizing a practical problem and interrelating theory and practice
(e.g., Golby, 1993; Merriam, 1998), or when a theory needs to be developed
or validated (Coleman, 2002).
Situations where one would ask a “how”- or “why”- question about a
phenomenon (Yin, ibid) may also call for research that is based on interviews. “Interviews are particularly suited for studying people’s understanding of the meanings in their lived world, describing their experiences and
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self-understanding, and clarifying and elaborating their own perspective on
their lived world.” (Kvale, 1996, p. 105).
Both case study research as well as research based on interviews have
been criticized for their subjectivity and biased data collection, analysis and
conclusions (Yin, ibid).
Case studies in many ways aim for similar goals and face similar objections as qualitative research interviews. Both serve an important purpose in
the study of language development and language disorders, but also in describing related interventions, including AAC (McEwen & Karlan, 1990).
One can argue that outcomes of interviews will always reflect the subjective
views of the interviewees, which definitely is the case in this study. For
Kvale (1996), however, it is the strength of the interview conversation to
capture that multitude of subjects’ views and “to picture a manifold and controversial human world.” (ibid, p. 7).
Case study research has been criticized for not being really representative
(Hamel, Dufour & Fortin, 1993) and thus having a weak base for generalization (Gomm, Hammersley & Foster, 2000; Sevcik, Romski & Robinson,
1996; Stake, 1995). Theoretically the results of case study research can be
generalized in so far as they may correlate with readers’ experiences and
provide a natural base for generalization for readers who are able to compare
their experiences with those of the case study (Stake, 1995; Yin, 1996). Here
Stake (ibid) uses the term “naturalistic generalization” (p. 19). Virtanen
(2002), on the other hand, suggests speaking of “referencing and transferability of conclusions relating to one individual case or a limited number of
cases” (p. 100). Both Golby (1993) and Stake (ibid) argue that generalization
does not require an accumulation of instances, but that the real value of case
studies lies in the particularity of individual experiences. Those experiences
may then provide useful examples for a larger number of readers.
It is the qualitative researcher’s task to be precise in description and stringent in the interpretation of meaning, just as it is the quantitative researcher’s
task to be exact in measurements and outcomes. “Thus the chief point to be
remembered with this type of research is not so much whether another position with respect to the data could be adopted …, but whether a reader,
adopting the same viewpoint as articulated by the researcher, can also see
what the researcher saw, whether or not he agrees with it. That is the key
criterion for qualitative research.” (Giorgi, 1975, p. 96).
Especially when it comes to studying a complex and not very well known
phenomenon information being rich in context can provide both a theoretical
as well as a practical base for readers working in the same or a similar field
(Salminen, 2001). For my own study I view Golby’s (1993) and Stake’s
(1995) arguments of the value of case studies lying in the particularity of
individual experiences rather than in an accumulation of instances as the
strongest support to justify that kind of approach: All the interviewees were
confronted with the same catalogue of interview questions and the recorded
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answers were transcribed verbatim. Even though there were considerable
differences within the communicative challenges the children of the participating families were facing, in many aspects the outcomes still showed similar patterns. So there is reason to conclude that certain issues which for example were considered major challenges by the interviewees in this study
may be similarly challenging for other families with a child who uses AAC.
My knowledge about the life world of the interviewees increased with
each interview and each transcription. Through compiling the interview transcripts and looking for common patterns versus differences the picture had
become wider, from focusing on one interviewee to a more general understanding of what it means to live with a child in need of AAC.
The interviews
The interview situation
All the participating parents were free to decide on the location where they
wanted to meet with me for the time of the interviews. In five cases the interviews took place in the parents’ homes, four parents came to my home for
the time of the interviews, and one interview was conducted in a “neutral”
place, in this case the child’s former school. The time for the interviews
ranged between one and a half and three and a half hours, depending on how
elaborately the questions were answered. The longest interview was the one
where both mother and father served as interviewees, as to most questions
they both expressed their personal views. In one family the interviewee was
the father only, in the remaining families only the mothers participated in the
interviews.
Some interviewees were easier to interview than others regarding their
eloquence and education, sensitivity to the topic and preciseness in their
answers as opposed to those who had a tendency to wander off. Some were
quite consistent in their answers, while others seemed to be ambiguous or
even contradictory in certain statements. However, when asked to explain
such contradictions in most instances it turned out that the expressed contradiction precisely reflected how the interviewee experienced a situation, thus
adding to the understanding of the interviewee’s everyday life. Furthermore,
the aim of a qualitative research interview is not an outcome of quantifiable
meanings on the topics in focus, but to obtain as precise as possible descriptions of ambiguous meanings. Contradictions of interviewees “may in fact be
adequate reflections of objective contradictions in the world in which they
live” (Kvale, 1996, p. 34).
Two families had not been using the communication device at home on a
regular base and never out in public. Therefore, questions related to the
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child’s benefits or limitations when using the communication aid were answered by classroom teachers or speech language therapists, which was
marked in the transcripts of the interviews.
All interviewees answered at least some of the questions in a narrative
mode, telling one or more stories to explain their standpoint regarding a phenomenon they had been asked about.
The interviewees had developed different strategies to deal with emotions:
While some freely showed emotions like anger or grief others tended to hide
their emotions, e.g., by covering sadness with laughing; as the interviewer I
heard laughter, but at the same time was aware that the interviewee actually
more felt like crying. Parents were free to choose not to answer a question;
none of the interviewees, however, had taken advantage of that option.
Sometimes there was a “groping for words” – interviewees were virtually
struggling to find a term to best describe a situation or feeling. For this study
I regarded it as advantage of the interview as a dialogue based on an interview guide as compared to a questionnaire asking for written answers that
the oral dialogue has room for such “groping”; also, through my additional
questions which aimed for clarification or my repetition of statements parents not only could find words and expressions that worked best for them as
informants, they also received feedback of how that information was reaching me as the interviewer.
Parents’ views on the interviews
In many instances the parents as the interviewees reported having perceived
the interviews as positive experiences. Not only had someone been listening
to them for an extended period of time, there was also a special quality to
that listening; so the interview as such was seen as a positive experience.
Many parents actually acknowledged during or after the interviews how
much they had enjoyed talking about sensitive issues without the aspect of
evaluation, as it typically is the case when they are asked to talk about their
child’s communicative abilities.
Almost all parents reported after the interviews how interesting it was for
them to reflect upon their child’s communication in a structured way and
from different angles and that by having to focus on answers to questions
they might not have asked themselves they had gained new insights themselves.
In the case of Tina’s mother who had read the transcribed interview to her
daughter the interview had helped her to even discover a side in her daughter
that had been unknown to her before. In the interview she had reported that
Tina never uses her high tech communication device when communicating
with her sister. However, after she had read the transcribed interview to Tina
she revealed to her mother that she had been wrong here - she actually does
use the device for chats with her sister, especially when they are by them114
selves and when it is about issues their mother is not supposed to know
about. Before the interview the mother had been convinced that she and occasionally Tina’s younger brother are the only ones in the family who are
addressed by Tina via the communication device, so she had learned new
aspects about her daughter as well.
Answers to the research questions
Challenges for parents regarding their children’s limited
communication
Child’s inability to share events
All parents of the children in the impressive language group experience the
limitations in their child’s ability to share an event as a major challenge in
communication. Sharing an event is restricted to situations when the child
had been supplied with the appropriate message on the SGD and when the
communication partner had been informed to take out the SGD in order to let
the child share the message. None of the children in this group would indicate by him/herself that they have a novelty to share which is unknown to
the parent or another communication partner. Without the help of the SGD
together with the appropriate recording and picture or photo referring to the
situation on the overlay the children are unable to talk about issues apart
from the here and now. One purpose of communication is to make another
person aware of a novelty (e.g., von Tetzchner, 2005; Zollinger, 1995). Consequently, when the ability to share novelties with others is missing, a major
aspect of interpersonal communication simply is not existent, a fact which
by all parents is perceived as a major challenge.
Child’s inability to ask questions
No child of the impressive language group is able to ask questions in a conventional mode other than speech, either by formulating a question via the
SGD or by using the appropriate sign. Parents take, however, other aspects
in the child’s communication as if it were a question and respond accordingly (e.g., the child repeats the name of a parent, which the other parent
understands as the child asking for that parent, although an intonation which
typically indicates a question, such as a rise in pitch, is missing). Other parents interpret the child’s mimics as questioning, formulate the question for
the child and provide the answer. One mother has created a special overlay
symbolizing questions for her child’s SGD and prompts the child to use it.
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Three children in this group have absolutely no way to ask questions,
which is experienced by the parents as a big downfall in communication. So
obviously even the missing aspect of turn taking (child asks a question, parent answers, child might ask again, etc.) and the fact that the parent has the
dual role of having to formulate the question and providing the answer in
one person is perceived being more satisfying than the total lack of questions
from the child’s part. The underlying reason for the inability to ask questions
may be impaired language understanding. A child needs to be aware that
others know things he/she does not know and that he/she can increase his/her
knowledge by asking (Berglund, 1999), otherwise the child will not be motivated to ask questions.
Falkman, Sandberg and Hjelmquist (2002) studied seven preschool children with cerebral palsy and observed limited linguistic communication despite age appropriate cognitive abilities. They explain the results by the children’s limited interaction possibilities with the environment due to their motor impairments, which in turn might prevent development of linguistic skills
necessary to take part in more complex communicative interactions.
For the children in this study there is a higher correlation between the
child’s cognitive abilities and his/her ability to ask questions, though in
atypical modes, than between the child’s motor abilities and him/her being
able to ask questions.
Parents’ frustration for not understanding the child
Both noticing the child’s frustration when he/she cannot get a message
across as well as the own frustration for not being able to help the child and
to read his/her mind are a challenge for parents of children of both language
groups. One might suspect that frustration resulting from communicative
failures might decrease when the communicatively challenged child is supplied with a communication aid. It is, however, noteworthy, that for the parents who participated in this study using the communication aid does not
spare them from frustration. All the children of the impressive language
group are using SGDs with recorded speech and with a limited number of
locations, so their setup rarely is fit to serve communication needs in situations other than what it had been created for.
Although the children of the expressive language group clearly have more
possibilities to make themselves understood than the children of the impressive group, their parents also know situations when they feel they do not
really understand their child, especially when it is about emotional issues.
Tina’s mother reported the frequently occurring situations when she is
uncertain whether Tina is not able to share a message with her or whether
she does not want to share it as being extremely frustrating. Both Tina’s as
well as Desiree’s parents report the tendency in their children to give up
trying when they have problems to express a message, which leaves the
parents with the feeling of helplessness.
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Communicative failures are likely also to occur in families with children
with typical development when the children have not yet reached a stage of
speech and language development to sufficiently express all their needs and
wants, leading to frustration on both the children’s as well as the parents’
side (Zollinger, 1995). Some children with severe and multiple disabilities
and complex communication needs, however, might never proceed to a
higher level of speech and language development. “As children (with typical
development – author’s remark) grow older and gain better language competence, their communication also becomes increasingly autonomous. There
are few restrictions on what they can say, and they are responsible for their
own language productions. The ultimate goal of intervention (in AAC – author’s remark) is a similar communicative autonomy. Communicative autonomy is not the same as being able to formulate an utterance independently.
Children using aided communication may need a lot of assistance in the
physical formulation of their intended meaning. Autonomy refers to where
the messages originate and whether the children have the means required to
express themselves in accordance with their communicative intentions.
Communicative autonomy means to have one’s say, to communicate one’s
own thoughts, ideas and emotions.” (Von Tetzchner & Grove, 2003, p. 27).
The children in this study, especially the children belonging to the impressive language group, in most situations have not reached that level of communicative autonomy. Parents are aware that their child has wants and
needs, but the child is unable to clearly express them, and his/her SGD in
most instances is of little to no help. This gap seems to be a major source for
feelings of frustration. The results of the interviews are indicating that the
more severely a child is involved, the less variations in his/her communicative attempts are observed by the parents. The more limited the child’s repertoire to express him/herself is, the more difficult is it for the parents to read
the child’s wants, needs and emotions.
Which are the situations when parents use communication aids
at home?
Training situations
For the families of the children who belong to the impressive language group
who are using the SGD at home the emphasis is on practice and training
communicative aspects like starting an action (when the SGD is used as a
switch or to elicit a song), turn taking or finding the appropriate picture or
symbol to represent a word or phrase. One family uses the SGD to rehearse
at home what has been done in school.
For the three children in this study who are using signs in addition to their
SGD it turned out that while using the SGD mostly is considered as working
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with the child, using signing is perceived as communication without the association of work or training.
The two children who are belonging to the expressive language group
mainly use their SGDs for sharing messages with their parents, although
both try using non technical communication modes (e.g., gestures, vocalizations, pointing) first to get their messages across. As using their SGDs requires learning the techniques of semantic encoding and memorizing the
sequels of icons (see also Appendix 1) especially in the beginning the parents also functioned as trainers, while with increasing competence more and
more only the speech therapists are involved in the training, while the parents can focus on communication and creating codes for new words as
needed.
Playing games
Two families are especially fond of playing simple strategy games with their
children, and regularly include the child’s SGD, using specially designed
overlays to fit the game. Both families point out the advantage that by using
the SGD the child has a much more active role in the game. Such games are
typical children’s games where peers or siblings are taking part, and are not
specially designed to improve a certain ability in the child, as is the case with
dedicated material for special education. This is the more noteworthy as
children with severe and profound disabilities are frequently faced with
training situations, they rarely are allowed to play simply for the sake of
playing; “play is only viewed as a means to train a particular function”
(Brodin, 1999, p. 30).
Making choices
All the families who are using the child’s SGD at home are acknowledging
the fact that it offers a means to make choices, although the choices vary
according to the child’s communicative level. So a child might choose
among songs which are recorded on the device, another child uses it to select
food items, and another family brings the SGD along when they shop for
new clothes for the child to let the child determine style or color. The parents
who are using the SGD for choice making agree that the children develop a
sense of responsibility for their choices, it is them who are selecting something and they are more likely to stick to their decision than when something
was selected for them.
This observation is supported by Burkhart (2002), who states that being
able to make choices not only helps the individual to develop a sense of the
self and at least some sense of independence, it also increases cognitive engagement and helps to reduce passivity. This is also confirmed by Brodin
(2000), who stresses that being able to make choices is of great importance
for an individual’s health and quality of life.
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Facilitating the child’s independence
Some families use the SGD to allow the child active communication with
others. E.g., Elisabeth’s parents had created a special overlay representing
phrases for small talk in case they meet someone during a walk, and Nadine’s parents report using an overlay when the family is eating out, where
Nadine for example can choose her dessert or decide whether mom or dad
may have a glass of wine.
Tina’s high tech device can be connected to a phone, so her mother reports that only since Tina has become fairly competent in using that device
does she feel more comfortable leaving her alone – Tina is able to call her
via her SGD in case of an emergency.
Situations when parents would not use the communication aid,
and reasons for not using it
Preference of unaided communication
Two families (Sandro’s and Timmy’s) admit to never use the child’s SGD at
home. Both families report that communication within the family is faster
and easier without the technical aid, and they prefer to rely on partner assisted scanning and waiting for the child’s approval, or on the child’s limited
repertoire of intelligible utterances. However, both families had been very
interested that the child would be supplied with a technical communication
aid and are acknowledging its usefulness with persons who are less familiar
with the child.
The phenomenon that existing AAC-systems are rarely or not at all used
by caregivers in communication with non speaking children has been found
in previous investigations (e.g., Murphy, Markova, Noodie, Scott & Boa,
1995; Salminen, 2001; Strässle, 1998; Udwin & Yule, 1991; von Tetzchner
& Martinsen, 1996). Family members prefer to communicate by asking their
children closed questions that can be answered with a “yes”- or “no”- response, and they rather rely on the child’s own limited possibilities like a
limited repertoire of intelligible utterances, pointing, gestures, mimics or eye
gaze. They seem to prefer possible misunderstandings and incorrect interpretations to the many times much more cumbersome and slower mode of technically aided communication with its restricted vocabulary, especially when
the output is recorded speech. The studies indicate that children with complex communication needs only use their communication devices at certain
times and in certain contexts and that the devices are rarely used within
families.
Adaptation and use of assistive technology involves more than skills in
setting up and using the devices; equally important are the personal and cultural meanings of technology for its user (Spencer, 1998). However, the
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question what a device means for a participant and how it affects his/her life
is not always taken into account by speech- or occupational therapists, which
is also confirmed in some of the interviewees’ answers in this study and
may, among other reasons, account for SGDs not proving themselves useful
in a child’s everyday life within his/her family.
Communication with other children
Almost all of the children in this study mainly use their SGDs in communication with adults. The exception is Tina, who told her mother after the interview that she sometimes uses her high tech device to talk to her sister,
which the mother had been unaware of before the interview. The situations
when the other children in the study are using their SGDs with peers or siblings usually need prompting; parents or teachers are designing the situation
in a way to increase the participation of the non speaking child via the SGD,
usually during games. Without such prompting or special design the children
have not been observed to use their SGDs with peers or siblings. Both Nadine’s as well as Tina’s mother nearly used the same words to describe the
phenomenon: “Children have their own ways to communicate with each
other, they are less complicated. Adults are much more in need for the communication aid to understand her.”
The children in this study who have been in inclusive education all were
included successfully among their peers with typical development; their
peers liked to share activities with them, they also were addressed regularly
by peers, and parents as well as teachers definitely could observe a lot of
communication. However, the communication among peers hardly ever included the use of SGDs. The underlying reasons for this phenomenon might
be found in both sides of the communication partners, that is in the AAC
users as well as in the peers with typical development. According to Clarke
and Kirton (2003), young aided communicators tend not to use their communication aids when interacting with their speaking peers, they rather wait
for them to initiate the conversation or for being asked closed questions
which can be answered with either approval or disapproval. On the other
hand, if an alternatively communicating child is expected to successfully use
his/her alternative communication system in communication with peers, not
only the adults who are around the child, but also the fellow classmates need
to be familiar with the child’s system (Brodin & Lindstrand, 2004; von Tetzchner, Brekke, Sjothun & Grindheim, 2005).
Due to system inherent reasons, however, typically the children in need of
AAC receive intervention outside the classroom (Pickl, 2005). AAC intervention units including the whole class are the exception and more likely to
happen where the child in need of AAC is attending a special class than
where the child is included within a regular class. So it depends on the
teacher how much he/she is interested in the child’s communication system,
how much he/she integrates that system in class and to what extent he/she
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explains the system to peers and encourages them to use the system with
their non speaking class mate. For situations at home it depends on the parents to what extent they are modeling the use of the communication system
in the presence of other children.
Some children in this study also use communication boards, mostly with
photos and PCS (Mayer-Johnson, 1982) in addition to their SGDs. However,
less than half of the existing PCS are actually transparent where the meaning
of a symbol is immediately clear; the majority of PCS falls into the translucid category and some even are opaque, especially when they are supposed
to represent non iconic words (Baker, 2004). Consequently, peers who are
not yet fluent enough readers to quickly decipher the words printed above
the symbols are at risk to incorrectly guess a meaning and might find other
modes of communication easier. Successful communication is not guaranteed just by the child who uses a symbol or sign knowing its meaning, but
also how that symbol or sign is interpreted by the communication partners
(Lindstrand & Brodin, 2004a).
By using SGDs peers are freed of the need to guess the meaning of a
symbol, usually the recorded meanings are clear enough to be understood by
children. One reason for peers not using SGDs might be that the device first
needs to be taken out and set up – by the time the SGD is ready to use the
moment of spontaneous peer communication usually is gone.
Another reason might be the restricted vocabulary on SGDs with recorded
speech. The overlays and recordings usually are made to fit a special situation, but are useless for spontaneous communication. Exceptions are Desiree’s and Tina’s high tech devices, but here communication via the device
is restricted to situations when the children are in the same room where the
device is stationed. Being ambulant and hemiplegic none of the girls is able
to constantly carry the device along.
The third reason why SGDs are not included in peer communication
might be the still exclusive state which those devices have in Austria, where
that study has been conducted. Insurances do not pay for communication
aids, and getting funding typically is a long and cumbersome process for
parents. In the interviews most parents indicated their willingness to allow
other children to use the SGD as well, but under the premise that an adult is
watching to avoid damage. Thus natural peer communication, where the
presence of an adult is not always desired, remains an illusion.
Interaction between children using AAC and friends
All of the children in the study with the exception of Alexander would confirm the question whether they have got friends. However, from the children
in both language groups Nadine is the only child whose interaction with
peers comes closest to the typical concept of what it means to “be friends
with somebody”. This interaction is facilitated by the fact that her “best
friend”, a girl with typical development who is a bit younger than Nadine,
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not only attends the same school, but also lives in close neighborhood, and
that the parents always have encouraged mutual visits. Most of the other
children call peers with disabilities from their class or from their group home
their friends, but they rarely see them outside school, unless the parents arrange special visits. Some children with disabilities consider children as their
friends who actually are the friends of their siblings.
One might suspect that the two children who belong to the expressive language group should have possibilities to carry on friendships, both girls have
been in inclusive education, are ambulant and efficient users of their communication aids. As it turns out, however, their “friends” are actually more
the friends of their siblings, and they sometimes take part in shared activities. Tina makes use of an organization where young people without disabilities engage in leisure time activities together with youngsters with disabilities and sometimes might refer to the person who is accompanying her as
“her friend”. That person, however, is paid for the time he/she spends with
her, which does not resemble a naturally grown friendship. Both Desiree’s as
well as Tina’s parents see their children’s drooling as a problem that might
make peers, especially youngsters in puberty, hesitate to start a closer relationship. For both girls the drooling had been less of a problem in their interaction with peers with typical development during their early school years.
For the children in this study it is true that the communication aids facilitate communication with adults, but are of less use in their communication
with peers. Using a communication aid or not does not seem to have an impact on the child’s possibility to begin or carry on friendships.
Similarly, Salminen (2001) observed that the children who participated in
her study only had little experience of interaction with peers. E.g., they were
talking about having many friends, while others who knew the children well
would rather label these “friends” as superficial contacts. These findings are
confirmed by Rinaldi (1996), when he observed language impaired children
talking about friends, although they had very poor concepts of friendship.
Children with restricted mobility frequently speak about “playing with
other children”, although in fact they are just observing others playing
(Brodin, 1991, 1999). Jan’s father was the only parent who addressed that
fact in the interview: he was clearly aware that his son usually plays a passive role in the interaction with his brother and with peers.
Interaction between children using AAC and siblings
Only one of the children in this study (Timmy) is growing up without siblings. Nadine, who is the only child of her mother, is living together with her
stepfather’s son. All the other children are growing up with one up to three
siblings. “Siblings, both directly and indirectly, influence the linguistic environment of the child as conversational partners and as somebody who requests time of the parent.” (Berglund, 1999, p. 61). For the children in this
study the naturalness and easiness of interaction between the child using
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AAC and his/her siblings seems to decrease with the increase of the challenges the child is facing. Only Desiree and Tina, the two girls who are ambulant, have good enough hand movements to communicate via gestures and
are using a high tech communication aid, appear to have what would be considered a typical relationship with their siblings, including fights and quarrels as well as sharing secrets. The more severe and multiple the challenges,
the less natural is the interaction: Elder siblings dedicate special times to
interact with the child in need of AAC, but these times become less frequent
as they grow up and are facing higher demands and pressure by their own
school situation. All parents report the interest of sibling in the child’s SGD,
but again that interest decreases as the siblings get older.
Being on holidays
Only Nadine’s family regularly brings her SGD along for trips or holidays.
Other families would not use the technical communication aid during holidays because it is associated with school time (Jan’s family), because parents
resist to have another piece of luggage to pack and look after (Charles’ and
Tina’s families) or because parents are afraid something might happen to the
device (Moritz’ and Desiree’s families). In these situations parents rely on
other communication modes, be it signs which the children are using or verbal utterances. Jan is dependent on partner assisted scanning when he is
without his SGD. Tina’s mother reports that especially during holidays she
and her daughter are spending so much time together that she knows about
the topics Tina might like to talk about and does not need the technical aid to
communicate with her. When Tina is spending her leisure time with other
persons it is unpractical to bring along her SGD – due to her hempilegia it
would be too cumbersome to carry the device, and the risk of damage to the
sensitive and expensive high tech device is considered too great.
Alexander’s mother is using his SGDs at home on a regular base, though
mainly for training purposes, but would not bring the SGD along for holidays either. His signs, however, are used consistently, independent of the
family being at home or away for holidays. The same is true for Charles’ and
Moritz’ families: The SGD is left at home, but the children’s signs are used
independent of the location.
Correlation of the frequency a communication aid is used at
home and parental expectations of its use outside the home
For the parents who participated in this study both satisfaction as well as
frustration regarding the use of the communication aid outside the home are
independent of the amount of time the communication aid is used by the
parents at home. The two families who never use the child’s SGD at home
still express the wish of the device being used in school or during therapy
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and are disappointed when they find out that in certain situations, e.g., in the
group home, the device has not been used for a while. Seppälä (1996) reports
a similar phenomenon in her study about the use of electronic communication devices at home: Only one out of five families in her study used the
devices, but all families considered the devices as helpful for their children
in the future and especially outside the home. Salminen (2001) concludes
that for some families basic care for their children and workload in general is
so overwhelming that despite of good intentions they simply have no space,
time or energy left for using a communication device.
Correlation between cognitive and physical abilities and
preferred communication aids
For the children in this study there is no correlation between the severity of
the child’s cognitive and/or physical disability and the frequency or regularity the communication aid is used at home. Some children need considerable
help to access a location on their SGD and the parents still use the device
regularly and in a variety of situations, while others are able to independently elicit a message, but the parents prefer unaided communication modes.
The child’s ability to produce a limited repertoire of verbal utterances or
signs does not necessarily lead to the technical communication aid being
used to a lesser degree. E.g., Sandro is extremely limited in his verbal utterances, but his family still finds partner assisted scanning (offering choices
which he answers with either “yes” or “no”) easier than using the SGD,
which may have to do with his severe physical limitations. Children like
Elisabeth or Moritz are able to speak a limited number of words and phrases,
and still their parents regularly are using the SGD, especially in situations
where they find the child will profit from using the device (e.g., for choice
making or playing games).
Reasons for the choice of communication aids
The children in this study differ both in their cognitive as well as in their
physical abilities. Only one of the children who also use signing in addition
to other communication modes has nearly unimpaired hand functions aside
from a mild apraxia (Moritz), while the two other children (Charles and
Alexander) clearly would find it easier to point to a location of appropriate
size on the SGD than to perform a sign. Charles’ hand movements are impaired due to cerebral palsy, isolated finger movements, except pointing, are
difficult for him. The reason why in his family, especially in certain situations, e.g., mealtimes or during trips, signing is the preferred communication
mode for him is the easiness of accessibility. His signs are based on ASL
(American Sign Language), but were adapted according to his manual abili-
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ties (“any other person who knows ASL would not know what he says, you
have to know how he performs his signs” – Charles’ mother).
Alexander is able to use his hands and to elicit messages via his SGD despite his low muscle tone. In his case the cognitive situation was the reason
why individual signs were his first communication mode. At the beginning
of intervention pictures did not yet represent meanings for him, he learned to
use his SGD as switch first (e.g., to activate a light chain) before he started
to elicit songs or phrases. By linking movements that were already part of
his motor repertoire to certain objects or food items he gradually associated a
movement with an object or food and that movement became his individual
sign. At the time of the study he was able to perform a sign when asking for
a desired object, e.g., a toy animal, without modeling, under the condition
that the object was present and within his sight. He also was able to recognize naturalistic pictures, e.g., of food items, and use those on his SGD.
For Sandro and Nadine the communication aids they are supplied with,
SGDs with eight locations and several levels, are more a compromise than a
solution: Both children are considered severely and multiply challenged, but
according to their vocal reactions, mimics or appropriate smiles or laughter
they seem to comprehend a lot of what is going on around them and obviously have something to tell, only their degree of impairments is building an
obstacle to finding effective ways of active communication for them. For
Sandro a scanning mode to access a certain vocabulary via an individually
adapted switch due to his visual impairment is no option to compensate for
the severe motor limitations. He is unable to reliably recognize photos, pictures or symbols by which the vocabulary could be represented, and auditory
scanning would again restrict him in his communication.
Nadine’s overall motor situation does not allow sufficiently controlled
movement of a body part to independently activate a switch and thus access
a larger vocabulary via scanning. However, both Sandro and Nadine have
reliable “yes” – responses, Sandro via vocalization, Nadine via eye gaze. So
partner assisted scanning, using the overlays without the SGD, or playing the
“twenty questions game” without visual support are the most frequent communication modes for both children during every day communication. Their
SGDs together with dedicated overlays are mostly used in specific situations
(e.g., games, topics in class, eating out, etc.). When using the SGD both Sandro as well as Nadine again use their “yes” – response when asked about the
correctness of the chosen location, and then they need physical help to actually elicit the message. However, despite the similar problems the two
children are facing the use of the SGD within their families differs tremendously, from no use at all in Sandro’s family to regular use in Nadine’s family. Consequently, using versus not using a communication aid within families is not only influenced by the child’s abilities, other variables are of equal
importance.
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Both Desiree and Tina had been using low tech communication boards or
books before they switched to their high tech communication aids. Both girls
were already in puberty when they received their technical aids, which might
explain their preference of the technical aid over their old symbol boards or
books. Both considered the low tech aids as simply being not cool enough.
The preference cannot be explained by physical abilities, as both girls are
able to use the fingers of the unimpaired hand to indicate the desired symbol
on the board or the location on the technical aid. However, with their high
tech aid they have a communication tool that causes interest and positive
curiosity in peers, also admiration of how proficient they are in handling the
technical aspects of the device. In contrast, the use of their low tech aids had
always been well accepted by peers, but certainly not admired.
Preference among parents between technical and non technical
communication aids
Technical developments in AAC, including SGDs, offer many opportunities
for individuals with complex communication needs (Beukelman & Mirenda,
1998). All the parents who participated in this study were interested in the
child being supplied with a technical communication aid once they had obtained the basic information. Furthermore, they all had taken considerable
efforts, depending on the capacity and costs of a device, to go through the
process of funding. Still, the families in this study who are using the SGD at
home on a regular base are the minority; if SGDs are used, typically only
one parent, usually the mother, is responsible for using the SGD with the
child. In contrast, when children also are using a limited sign vocabulary
these signs are used throughout the day and with all family members.
Possible reasons for this phenomenon have been discussed above, most
important probably being the easiness of accessibility: No other tool is
needed for communication, the child’s body is sufficient. Tools are essential
in human life, for persons with as well as without disabilities: “Just as techniques (including the hardware now customarily called technology) were
essential from the origin of our species, so they are present in human life
from birth.” (Tenner, 2003, p. 30). “At least in later life, nearly all of us need
artificial aids, and society depends economically on their existence.” (Tenner, ibid, p. 214). However, tools which had been created to aid persons with
disabilities are perceived differently not only by their users, but also by society. As one mother had put it: “People look at a child in a wheelchair with
sympathy, but when they see that child using a technical communication aid
the reaction usually is positive curiosity.”
So it seems that although communication aids are seen more positive than
mobility aids, e.g., a wheelchair, mobility aids are used regularly, they simply are a necessity to move the child from one point to the other. Obviously
communication aids are not linked with the same kind of necessity. We can
observe a discrepancy between the positive attitude parents have towards
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technical communication aids and the extent they actually are using them.
The question remains in how far parents are actually involved in the creation
and design of technical communication aids and in how far their capacities
really are fit to fulfill parental needs. “If we define technology as a modification to the environment, then we must recognize the complementary principle of technique: how that modification is used in performance. New objects
change behavior, but not always as inventors and manufacturers imagine.”
(ibid, p. 4).
Initiating a communication
None of the children in this study who own technical communication aids
use those to initiate a conversation, while two of the children who also are
able to produce a limited sign vocabulary are reported using signs to initiate
communication. This observation might have to do with the fact that sign
language is a very practical form of AAC in that it does not require any extra
materials and is easily used across a distance from communication partners
(Beukelman & Mirenda, 1998). In contrast, technical SGDs need to be put
up first, then equipped with an overlay that fits the situation and recorded
appropriately before they are ready to use. Exceptions are high tech devices
where the complete vocabulary already is stored and “just” needs to be retrieved. However, even in cases where children have access to such a high
tech device, signing has the advantage of being an omnipresent communication possibility, while the technical aid only is available in certain situations.
In the interview Tina’s mother reported that although as a small child Tina
had come up with individual signs to indicate certain messages, signing
never was pursued by the parents as they had hoped that their daughter later
would be able to communicate via spelling. Over the years the mother at
times had regretted that decision, since she had realized that despite Tina’s
hemiplegia signing could have facilitated their communication. Soon after
the interview, when the mother had received the transcript and had read it to
her daughter, she called to inform me that Tina has expressed the wish to
properly learn sign language now and persuaded her mother to do so as well.
Lage (1990) has reported similar findings – technical devices were not
used to initiate conversations. In cases where the participants initiated communication they used body language rather than their devices and directed
their initiatives to adults rather than peers. In her study mostly professional
communication partners initiated conversations and sometimes even provided answers for the individuals in need of AAC.
Brodin (1991) explains passivity in children with profound and multiple
disabilities as a lack of interest in stimulating activities and topics to communicate about. Basil (1996) explains this passive communicative behavior
of persons with severe disabilities using alternative communication modes
by learned helplessness. She found that the ways communication partners
interacted with persons with profound disabilities had a big influence on
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whether these persons would learn to actively engage in communication or
not. The persons in need of AAC developed a much more active
communicative behavior once their caregivers had been trained to ask open
ended questions and to allow the persons who were communicatively
challenged more time to answer or to share a message. Tina’s mother had
expressed that fact very clearly: “That’s what’s most important: to give time.
That’s what people need to be told”.
Family involvement
According to Parette and Angelo (1996), parents of children with disabilities
take on many roles; besides being parents and loving care givers in many
instances they also act as co-teachers and co-therapists. All families who
participated in this study are involved in their children’s communication
intervention, though to varying degrees. With the exception of only two
families the main responsibility of using the technical communication aid in
interaction with the child is on the mother’s part, while for the children who
also use signing that mode is used with all family members. This is even true
for families where both parents are working and, which is interesting to note,
is excused by the mothers by the father being too tired, too exhausted, etc.
when he comes home from work. At the same time these mothers are clearly
aware of their double burden of not only caring for the child, but also helping him/her improve the skills with the communication aid.
Studies on how caregivers perceive the burden of caring for a family
member with a disability indicate that “objective aspects” (e.g., type and
degree of the impairment) do not correlate with the perceived “subjective
burden”, which rather is determined by the way the caregivers react and
respond to the challenges they are facing than by measurable facts (Maes,
Broekman, Dosen & Nauts, 2003). Although in both mothers and fathers a
higher subjective burden relates to an increased risk for psychosomatic
symptoms (Olsson & Hwang, 2001), mothers are more at risk than fathers
for developing psychosomatic symptoms as a consequence of their child’s
disability (Rudolph, Rosanowski, Eysholdt & Kummer, 2003).
All families accept their child’s communication aid, although two families
admit not using it at home, as unaided communication is perceived easier
and quicker. These families, however, acknowledge the value of the communication aid for situations outside the family.
It is an illusion that only by working in dedicated sessions the child will
become an efficient user of an AAC-system, if that system is not accepted by
the family or the environment of the child (Parette & Angelo, 1996). In the
collaborative problem solving model (Björck-Åkesson, Granlund & Olsson,
1996), which since its publication has influenced AAC intervention in Sweden, the parents are regarded as experts on their child and are considered to
be competent as well as contributing members of the intervention team. The
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family also functions as the most important and effective trainer; any function which the child only is able to perform within the controlled environment of the therapy room cannot count as a truly acquired function
(Granlund and Blackstone, 1999).
The relations within the family have been gaining more and more importance for intervention over time (Björck-Åkesson, Brodin & Fälth, 1997).
Each family is functioning as a unit in which the member who is in need of
special support has a place and influence even if he/she spends most of the
time outside that unity. In the ideal case at the beginning of intervention the
family will define who for them belongs to the family unit and who needs to
be included in the intervention; here we may notice cultural differences and
also should allow room for cultural diversities. Many interviewees in this
study had regretted the fact that the child’s grandparents are not feeling comfortable when communicating or interacting with the child: “Every taxi
driver is more at ease when interacting with Alexander than my own
mother.” (Alexander’s mother). “The grandparents never have used the
communication aid, so finally I stopped packing it when she spends time
with her grandparents.” (Nadine’s mother). “My mother just does not know
how to interact with Jan. He feels that and his whole body is tightening.”
(Jan’s father). Statements like the ones above might be an indication not only
to include parents, but also grandparents or other relatives in intervention
(Kent-Walsh & Light, 2003).
According to Weid – Goldschmidt (1996), communication partners who
are used to verbal speech as their communication system find themselves in
unknown territory when they want to get in touch with non speaking persons. As a consequence, in order to achieve successful communication they
need to acquire a repertoire of behaviors that is new for them.
The issue of dependency
Only one child in this study, Tina, is actively involved in the choice of her
vocabulary and indicates to her mother that she needs a certain word or
phrase around a certain topic. All the other children are dependent on their
parents, teachers or therapists to supply them with new words or phrases.
Most of the children are dependent on others whether or not they are getting to use their communication aids; someone needs to create an appropriate
overlay first, do the recording and then make the device accessible for the
child. Unlike with speaking children others decide whether or not to give the
child a voice for making requests or telling a message. So we need to be
aware of the issue of power that is involved in the relationship between the
non speaking child and close caregivers; as Alan Newell, University of Dundee, commented during the 12th ISAAC conference in Düsseldorf, Aug.
2006: “Every parent sometimes would like to have a switch at the back of
the child’s head to turn off his/her speech for some of the time. Fortunately
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this is not normally possible. Parents of a non speaking child, however, have
got that switch.” Salminen (2001) stresses the dependency of the participants
on the willingness of parents, teachers and therapists to set up and use the
communication systems and concludes that “successful computer aided
communication requires a change in communication patterns and a change in
power relationships in communicative environments, as the devices may
help disabled children to become more independent, active and communicative” (ibid, p. 106).
Bilingual AAC users
According to Gardner (2003), AAC users are bilingual in so far as generally
they hear and understand their native language in the form as it is spoken by
others, but expressively they use symbols, signs, facial expressions, VOCAs
etc. Woll and Barnet (1998) discussed that concept in their discourse on
theoretical models of AAC: “While models of multilingualism and augmentative and alternative communication do not overlap completely, familiarity
with the issues raised by such models helps clarify variation in augmentative
and alternative communication system acquisition, usage and acceptability.”
(p. 201). There is, however, a difference between being bilingual in the sense
of hearing a language in a different mode than expressing it and growing up
in a bilingual environment. According to von Tetzchner and Grove (2003),
children acquire their native language in an implicit mode, simply by being
emerged in the linguistic environment and by being together with others who
are more competent in that language than they are. Where two languages are
spoken at home the same principle applies to both languages. With the exception of sign languages (when signing is the first language in a family or
when the child is exposed to signs accompanying speech from an early age)
all other forms of AAC are taught in an explicit mode, including strategies
how to learn vocabulary and syntax, similar to acquiring a new language
(ibid).
In three of the families who participated in this study at least one parent
has a native language other than German, and that language (in one family
American English, in another one Spanish and in the third one Polish) also is
spoken to a large extent at home. The children appear to have understanding
of both German as well as the language spoken at home, but equally show
receptive language deficits in both languages. Where receptive language
skills in the language spoken at home could not be evaluated by a speech
language therapist the parents reported a language understanding that was
not age appropriate.
So far research regarding bilingual AAC users is scarce, especially when
the persons in need of AAC have severe and multiple disabilities. More studies have been conducted regarding bilingual AAC users without or with mild
intellectual disabilities (e.g., Harrison-Harris, 2002; Rossi & Balandin,
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2005). The underlying reason might be that over the last two decades the
area of AAC and literacy had become a topic of increasing interest, and it
had been recognized that bilingual AAC users who are successful in developing reading and writing skills make remarkable gains in their receptive
and expressive language development and in use of their AAC systems. “Attainment of literacy allows bilingual and monolingual AAC users, like all
students, to be able to prepare messages to be used at a later time, produce
exact messages, and learn vocabulary with which they can spontaneously
spell out messages.” (Harrison-Harris, ibid, p. 4). According to the author
acquisition of more vocabulary and the ability to independently compose
text are just two advantages of literacy attainment; literal bilingual AAC
users also will face a wider vocational spectrum than illiterate persons in
need of AAC. Consequently, major focus has been brought to the topic of
literacy attainment for bilingual AAC users because of its particular importance for this population.
Of the three bilingual children in this study only Moritz has started to develop basic literacy skills; however, at the time of the study he was unable to
read a new text or independently spell out messages, and his mother was
skeptical regarding his future proficiency in literacy skills.
Charles and Moritz are using individual signs in addition to their SGDs.
Their parents report that signing at home is used with the language which in
a given situation is spoken, while the SGD always is recorded in German
only, the language the children are using in school. Again there seems to be
that connection between using an SGD with the aim to learn or practice a
skill versus using signing with the aim to simply communicate.
In Jan’s family Polish is the predominant language spoken at home. Although the father is fluent in German he reports that Jan does not take him
seriously if he addresses him in German at home, he would just start laughing. He does, however, accept the father recording a message on the SGD in
German. So here, too, the SGD is connected to school and the language spoken there, but not to the language that is used for every day communication
at home. The question remains whether an emphasis on including the parents
in intervention to a much higher degree might have led to increased use of
the SGD in the family’s native language. During the interview Jan’s father
reported that at home the SGD is taken out right away to check for new messages from school, but naturally these always are in German. There seems to
be a need for stronger inclusion of parents who are less proficient in the language used in school and during intervention (in Jan’s family the mother),
for modeling of how SGDs can be used during the day and for encouraging
parents to use their native language with SGDs.
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Possible considerations for intervention
The two topics to which parents had reacted most emotionally during the
interviews were the child’s inability to share his/her emotional state and the
reaction of family members to the child’s communicative challenges.
Both issues might be of relevance regarding changes in intervention strategies.
The child’s inability to express and explain emotions
The child’s inability to share his/her feelings was an emotional issue for all
parents, independent of the child’s developmental and communicative level.
Parents experience it as a challenge to mostly have to rely on guesses when
it comes to read the child’s emotional state of mind, and that is also true for
the two children belonging to the expressive language group, who have a
good understanding of spoken language and in theory have access to the
vocabulary that would express their emotions.
All children who participated in the study are being seen by different
speech language therapists and –pedagogues who definitely work on how to
express emotions, in addition that topic regularly comes up in classrooms.
Still, in many cases AAC-users seem to be at loss when it comes to express
their emotional state. A non speaking child is in the situation of being unable
to clearly express his/her emotions; these, as a consequence, are not recognized by the environment in their full amount and thus will remain hidden
from the child as well (Bloom & Bhargava, 2004). Kristen (1994) stresses
the task of AAC research to fully understand what not being able to speak
means and which dimensions of personality are affected by that situation.
Nevertheless there is a definite need for new ways in intervention, starting at
an early age, to help the child to understand his/her own feelings and to acquire means to express those.
Difficulties of family members with the child’s communication
The other question which had raised emotions was related to the reaction of
family members regarding the child’s special ways of communicating. Parents seem to care less when more distant family members are less at ease in
communicating with the child, but express open grief when close family
members like their own parents have difficulties interacting with their
grandchild.
The issue of family members having problems communicating with the
child might be an indication to directly involve these persons in intervention
if possible and thus help them understand the prerequisites to successfully
communicate with an AAC-user. The benefits of including family members
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in intervention also were confirmed in the study of Björck-Åkesson, Brodin
and Fälth (1997).
Equally prerequisites for successful use of AAC from the user’s perspective still do not seem being taken into consideration to the extent that were
actually needed: A child who is acquiring a form of AAC not only has to
learn symbolic representations other than spoken words, but also sometimes
sophisticated communication technology. In addition to those challenges, the
child has to acquire the necessary skills for using his/her modes and techniques to successfully participate in communicative interactions with others
(Light, 1997). These others, however, the potential communication partners,
may lack the skills to successfully keep up a conversation with someone who
is using a communication aid; so the person who uses AAC further needs to
learn how to deal with communicative breakdowns and acquire possible
repair strategies (Rackensperger, Krezman, McNaughton, Williams &
D’Silva, 2005). How persons using AAC learn not only to use their communication aids in the technical sense, but also to apply them in a wide range of
communicative functions is, though dependent on the individual, not yet
fully understood and requires further research.
The illusion of the ideal communication aid for children
with severe and multiple disabilities
Despite of all the recent advances in technology and increasing knowledge in
the field of AAC with children with severe and multiple disabilities there are
issues which remain problematic. There are children (e.g., in this study Nadine or Sandro) for whom none of the existing possibilities might be enough
to serve their needs regarding communication and participation. The biggest
challenge in working with these children is the discrepancy between their
obvious need for some kind of a miraculous aid which would enable them to
express themselves to others and the lack of an aid to fit their needs. Of
course the communication partner can always play the “twenty questions –
game”, offering a number of possible choices or topics until he/she perceives
a signal from the child that can be interpreted as approval. That mode, however, is still far from active communication, as it is completely dependent on
the empathy of the communication partner, his/her previously acquired
knowledge regarding the child’s life circumstances and on the types and
numbers of choices that are offered (Beukelman & Mirenda, 1998; Sigafoos,
Drasgow & Schlosser, 2003). Plus, the “twenty questions – mode” at least
requires a clear “yes” – reaction, better even signals for both approval and
disapproval. As a consequence this approach does not work for a child who,
due to his/her physical limitations, cannot signal either one in a fairly constant and reliable way.
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Most interventions for these children focus on single message devices to
offer choices, sequencing devices to allow increased participation in songs or
play situations, or SGDs with several locations. These SGDs are equipped
with overlays with what is considered necessary or appropriate for a given
child in a certain situation, and finally the child usually needs help to access
the targeted location on his/her device.
The question remains, however, whether that mode justifiably can be
called AAC. While it fits into the category of being “alternative”, its classification of being “augmentative” is questionable. That mode of communicating a message is more than just augmented or supported. Instead, it is the
communication partner who creates the choice of messages in the first place,
who decides in which mode they should be represented, and who guards the
child’s hand, head pointer or what ever his/her mode of access might be.
And finally, the last part of the three word term AAC, being “communication”, definitely is not what we are seeing here, since the role of the child as
being one of the communication partners has been reduced to produce a supported repetition of what had been programmed before.
Without techniques the possibility for these severely involved children to
express themselves seems to be even more limited: now the partner has to
rely on body tone, mimics and/or vocalizations only as the starting point for
the guessing game and, although especially close care givers, in most cases
the parents, usually have become very good in reading their child’s state of
mood using these physical expressions (Brodin, 1991, 2005; Lee & MacWilliam, 2002), the child is even more dependent on the other person’s amount
of time, his/her empathy and his/her overall knowledge about him/her. While
the child might be able to express to close caregivers that he/she is happy,
sad or angry, in some cases it might get more difficult for him/her to show
the same state of mood to a stranger, not to mention the underlying reason
for that mood. For the development of a positive relationship to one’s own
life, however, it is important to get to know one’s own emotions and desires,
to differentiate these and to experience the environment being open towards
one’s needs (Bloom & Bhargava, 2004).
So there is a need to find ways for children who obviously are capable of
not only receiving, but also of creating messages and want to share those, but
whose degree of combination of disabilities does not allow independent access to the necessary vocabulary, in which mode ever that might be presented.
Children like Desiree or Tina obviously have found a communication aid
that perfectly suits their needs and capabilities and allows them a maximum
of participation. However, since both girls are ambulant and, due to hemiplegia, only have one fully functioning arm and hand, their communication
possibilities are limited to situations when their high tech communication aid
is available to them, which for them is either in class or at home. In other
situations they are again dependent on their limited gestures and vocaliza134
tions or a low tech communication aid. The main reason why Desiree is presented in a long term case study (Appendix 1) within this dissertation is to
highlight the difficulties of finding the most efficient mode of communication for a child with all his/her given abilities and limitations. The case study
also shows that problems are not solved once an appropriate communication
mode is found; children’s communication needs change as they grow up,
similarly their communication modes need adaptation in order to be effective
in the child’s present life situation. To put it with Brodin (2000, p. 74): “The
only way to make a change is to also highlight uncomfortable findings.”
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Concluding remarks
After having worked with children and adolescents in need of AAC for
around 25 years I had perceived myself as being fairly “experienced” in the
field. This interview study, however, had led to many new insights and
opened up new horizons for me regarding the necessary considerations when
it comes to supply a child with a communication aid. Instead of asking “what
does the child need?” the question rather should be “what do both the child
and his/her family need?”
Evaluating a potential AAC user’s developmental and communicative
level, his/her range of motions and possibilities of access to a communication aid are crucial prerequisites, but nevertheless insufficient as long as we
do not know about the child’s communicative demands within the family.
When during the interviews parents were asked what they experienced as
the greatest challenge in communication with the child, the child’s inability
to share events, experiences and expectations and to explain his/her feelings
were major issues. However, none of the parents had been asked at the start
of AAC intervention what they experienced as the biggest challenges related
to the child’s communication.
In contrast, almost all of the participating parents mentioned meal times as
situations where communication between the child and themselves works
best. All children had quite a number of symbols on their communication
boards or overlays for their SGDs that focused on meal times, yet these are
situations when parents clearly do not need communication aids.
This type of vocabulary might be useful for times the child spends outside
his/her family as it may facilitate choice making and lead to increased activity and participation; nevertheless the child is provided with a vocabulary
that hardly or never will be used within the family.
In the latest developments of SGDs we can observe an increasing tendency to involve parents both in design and choice of vocabulary and
phrases. Parents are confronted with their children’s communication needs
on a daily base, so these SGDs might proof themselves more useful for spontaneous communication between parents and child and might be more encouraging for children to not only respond to, but also initiate communications.
“Access to assistive devices may thus be an opportunity, a challenge, but
only if the technology is adapted to the individual and not the other way
around.” (Brodin, 2000, p. 71).
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Summary
In the center of this dissertation are children with severe and multiple disabilities and complex communication needs and their parents. Having complex communication needs in this case means that verbal speech either is not
existent or too limited to express needs and wants or to share messages with
others.
The primary motivation for this study was to investigate the phenomenon
that communication aids, though being used fairly regularly in classrooms or
therapy situations, are rarely used within families of children with severe
disabilities and complex communication needs. Even parents who were interested in supplying their child with a technical communication aid report
after a certain period that they are not really using the aid within the family.
Apparently the device fails to meet the challenges parents are facing in the
daily communication with their child.
Only few studies have been conducted to survey the meaning of information and communication technology for families with children with complex
communication needs. The results of these studies indicate the seemingly
contradiction that although communication devices obviously are considered
useful tools for persons with complex communication needs, they seem to be
used infrequently by the families of these persons. Family members rather
rely on the users’ own limited possibilities, be it a few words which can be
uttered intelligibly, pointing, mimics or eye gaze. They seem to prefer possible misunderstandings and incorrect interpretations of these expressions to
the many times much more cumbersome and slower mode of technically
aided communication with its restricted vocabulary, especially when the
output is recorded speech.
The focus of this dissertation is on communication, thus it contains chapters on the meaning of language and communication, on communication
development in children with typical development, and on communication in
children with severe and multiple disabilities. As many of these children rely
on augmentative and alternative communication (AAC), definitions and
changes in the application of AAC are also discussed.
The aim of this dissertation is to gain better understanding of how parents
to children with severe and multiple disabilities and with no or limited verbal
speech view their children’s communication and their communication aids.
The research questions are:
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What are the challenges for parents regarding their children’s limited communication?
What are the reasons for using versus not using communication aids?
What are the reasons for a preference of technical versus non technical
communication aids?
The study is based on qualitative research interviews with ten families
with children with multiple disabilities and complex communication needs,
with the parents being the interview partners. Analyzing the subjective descriptions is a way to reveal the meaning or essence of phenomena, in this
case parental experiences with their non speaking children and the use of
communication aids.
Conducting qualitative research interviews is closely linked with both the
phenomenological and the hermeneutic tradition, as well with research based
on case studies. Although this study neither is phenomenological nor hermeneutical in the formal sense, it is inspired by those research traditions. As the
study involves human beings, ethical principles in research are taken into
account.
Case studies in many ways aim for similar goals and face similar objections as qualitative research interviews. Both serve an important purpose in
the study of language development and language disorders, but also in describing related interventions, including AAC. Both types of research fit
situations where the boundaries between a studied phenomenon and the context are not clearly evident, that is, where one would ask a “how”- or “why”question about a phenomenon.
Both case study research as well as research based on interviews have
been criticized for not being really representative and thus having a weak
base for generalization. However, the results can be generalized in so far as
they may correlate with readers’ experiences and provide a natural base for
generalization for readers who are able to compare their experiences with
those of the case- or interview study.
Just as it is the quantitative researcher’s task to be exact in measurements
and outcomes, it is the qualitative researcher’s task to be precise in description and stringent in the interpretation of meaning. Especially when it comes
to studying a complex and not very well known phenomenon, information
being rich in context can provide both a theoretical as well as a practical
base for readers working in a similar field. For my own study I view the
arguments of the value of case- and interview studies lying in the particularity of individual experiences rather than in an accumulation of instances as
the strongest support to justify that kind of approach. Even though there are
considerable differences within the communicative challenges the children
of the participating families are facing, in many aspects the outcomes still
show similar patterns. So there is reason to conclude that certain issues,
which for example are considered major challenges by the interviewees in
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this study, may be similarly challenging for other families with a child who
uses AAC.
The children of the interviewees, who at the time of the study all were living
in Austria, differ in age, in their developmental and communicative levels as
well as in their socio-cultural backgrounds, but have in common that they all
are using one or more modes of AAC, involving no, low or high technology.
Eight of the children have difficulties not only expressing, but also comprehending and processing language, and thus belong to the impressive or nonverbal group. Two children are able to understand language, but are unable
to express language orally. They belong to the expressive or non speaking
group. The reason why I chose such a diverse group was that I wanted to
find out whether there are common patterns in how parents experience their
children’s communication and related challenges based on the children’s
severe communication limitations and their needs for alternative communication modes, independent of the children’s other abilities.
All the interviews were based on the same questionnaire, but some answers
of the interview partners led to additional questions. The interviews were
transcribed verbatim, and the transcripts were then handed back to and approved by the interviewees. With one exception, where the interviewee was
a native English speaker, the interviews were conducted and transcribed in
German and then translated into English. Interviewees who understand English also received the translated versions of the transcripts. The interpretation
of the answers which the interviewed parents had provided, however, was
based on the language the parents were using during the interviews.
For analyzing the interviews I followed Giorgi’s four basic principles of
analysis, those being reading the data, dividing the data into parts or units,
organizing and expressing raw data into disciplinary language and expressing the structure of the phenomenon, with the goal to find essences or patterns and their relationships. The common patterns that resulted from analyzing the interviews across the different participants (as in a cross-case analysis) to some extent account for reliability. Regarding generalization - since
the interviewee who served as informant is a representative of a group,
through that person new knowledge can be gained about the group’s needs.
Before actually conducting the interviews I had organized the questionnaire
that served as my interview guide into different categories. That already
established categorization made it easier to look for meaning units and
common patterns when I was analyzing the interviews.
Discovering repeated patterns belonged to the most exciting aspects in
this study, as in many instances they appeared in previously quite unexpected areas. The postulate of being open to new and unexpected phenomena
reveals the relationship with both the phenomenological and the hermeneutic
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approach. In hermeneutic studies the researcher must recognize prejudices or
pre-understandings and their possible influence upon the interpretations.
All the participating parents were free to decide on the location where
they wanted to meet with me for the time of the interviews. The time for the
interviews depended on how elaborately the questions were answered and on
whether one or both parents served as interview partners.
Some interviewees were easier to interview than others regarding their eloquence and education, sensitivity to the topic and preciseness. Some were
quite consistent in their answers, while others seemed to be ambiguous or
even contradictory in certain statements. However, when asked to explain
such contradictions in most instances it turned out that the expressed contradiction precisely reflected how the interviewee experienced a situation, thus
adding to the understanding of the interviewee’s everyday life.
All interviewees answered at least some of the questions in a narrative
mode, telling one or more stories to explain their standpoint regarding a phenomenon they had been asked about.
Parents were free to choose not to answer a question; none of the interviewees, however, had taken advantage of that option. Most parents reported
having perceived the interviews as positive experiences. They appreciated
the fact that someone had been listening to them for an extended period of
time, and that there was a special quality to that listening. Many also acknowledged how much they had enjoyed talking about sensitive issues without the aspect of evaluation, as it typically is the case when they are asked to
talk about their child’s communicative abilities.
To analyze the single interviews I first read each whole interview to capture
the general meaning. Afterwards I returned to certain themes to closer determine their meanings, and then went back to the more global meaning of
the whole interview, but now under the impression of the deeper meaning of
its parts.
First I presented the compiled results of the interviews with the parents
whose children belong to the impressive language group. When parents gave
similar or almost overlapping answers to questions these were compiled to
one answer that best reflected the meaning. Quotations were included not
only for clarification, but also to strengthen certain phenomena.
Since one purpose for this study was to find out whether certain issues related to the children’s communication were the same for parents although
their children were different in their communicative abilities, the next step
aimed to highlight common patterns in the interviewees’ answers.
The same principles were applied for analyzing the interviews with the
parents whose children belong to the expressive language group.
Finally common patterns in the answers of parents to children of both language groups were presented, as they seem to be of special significance for
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increased understanding of the parents’ challenges related to their children’s
communication.
Since communicative abilities between children belonging to either language group differed considerably I had assumed that the parental experiences and challenges related to communicative issues were equally different.
As it turned out, however, despite of the differing abilities and needs of the
children, there still are common patterns in parents’ answers to certain questions. These common patterns seem to be related to the dominating phenomenon of the children not being able to communicate in a typical way,
independent of how well the children are able to compensate their communicative deficits by using other means of communication.
All interviewees confirmed that situations within a familiar frame and family
routines are the ones when communication between parents and child is least
problematic, when the child’s expressions, signs or vocalizations are clearest
in their meaning. Especially mealtimes seem to be the situations when communication works best.
For all parents wants and needs are easier to understand than worries or
excitements. All families report difficulties when it comes to precisely understand the child’s emotional situation, no matter how simple or sophisticated the communication aid is which the child is using.
Parents express high satisfaction if the communication aid is used in
school or in the group home. Their desire to see it used outside the family is
independent of the amount of time and frequency the communication aid is
used within the family.
All parents feel that the communication aid facilitates their child’s social
inclusion and helps to break barriers and to keep conversations going. Parents report generally positive reactions from people who had not been confronted with similar devices before. Most parents stress that peers find it less
difficult to cope with the child’s communicative limitations than adults, who
find communicating easier when the communication aid is used.
Parents are aware of various family members dealing differently with the
child’s communication problems and as a consequence the child responding
differently as well. Most parents openly grieve the fact that their own parents
(the child’s grandparents) are less at ease in dealing with the child than persons from outside the family. Without exception all interviewees were mentioning one or more family members who never would use the communication aid when interacting with the child.
All parents express frustration about insurance companies denying reimbursement of communication aids and the need to actively search for possible donors. (This is an important issue for parents to children with disabilities who are living in Austria, the country where this study had been conducted, and might not be true for families living in countries with different
rules and politics).
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The common patterns in parental statements during the interviews served as
the base for answers to the research questions:
Major challenges for parents regarding their children’s limited communication are the child’s inability to share events, to explain emotions and to ask
questions. Parents also express frustration regarding their own inability to
understand the child.
The child’s inability to share his/her feelings was an emotional issue for
all parents, independent of the child’s developmental and communicative
level. Parents experience it as a challenge to mostly have to rely on guesses
when it comes to read the child’s emotional state of mind, and that is also
true for the two children belonging to the expressive language group, who
have a good understanding of spoken language and in theory have access to
the vocabulary that would express their emotions.
Situations when parents use communication aids at home are training
situations, aiming to increase the child’s skills in using the device, or situations when the family is playing games. Other situations are when parents
want to increase the child’s independence and when the child is encouraged
to actively make choices.
When parents are not using the communication aid this decision is based
on their preference for unaided communication. Other situations when communication aids are not or only rarely used are interactions with other children, be it siblings or peers, or times when families go away for holidays.
For the parents who participated in this study both satisfaction as well as
frustration regarding the use of the communication aid outside the home are
independent of the amount of time the communication aid is used by the
parents at home.
For the children in this study there is no correlation between the severity
of the child’s cognitive and/or physical disability and the frequency or
regularity the communication aid is used at home.
All families who participated in this study are involved in their children’s
communication intervention, though to varying degrees. With the exception
of only two families the main responsibility of using the technical communication aid in interaction with the child is on the mother’s part, while for the
children who also use signing that mode is used with all family members.
All interviewees mentioned family members who would never use the
communication aid during interactions with the child. Parents seem to care
less when more distant family members are less at ease in communicating
with the child, but express open grief when close family members like their
own parents have difficulties interacting with their grandchild.
Except for one child, who is able to indicate the need for new vocabulary
on her high tech device, the children are dependent on their parents, teachers
or therapists to supply them with new words or phrases. Most children also
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are dependent on others whether or not they are getting to use their communication aids; someone needs to create an appropriate overlay first, do the
recording and then make the device accessible for the child. Unlike with
speaking children others decide whether or not to give the child a voice for
making requests or telling a message, so clearly the issue of power is involved in the relationship, interaction and communication between the non
speaking child and close caregivers.
In three of the families who participated in this study at least one parent
has a native language other than German, which to a large extent also is spoken at home. Two of these children are using individual signs in addition to
their speech generating devices (SGDs). While signing at home is used with
the language which is spoken in a given situation, the SGD always is recorded in German only, the language the children are using in school.
The two topics to which parents had reacted most emotionally during the
interviews were the child’s inability to share his/her emotional state and the
reaction of family members to the child’s communicative challenges. Both
issues might be of relevance regarding changes in intervention strategies.
Despite intervention efforts to help the child express his/her emotions, in
many cases AAC-users seem to be at loss when it comes to express their
emotional state. However, emotions which are not clearly explained, many
times are not recognized by the environment in their full amount and thus
will remain hidden from the child as well. There seems to be a need for new
ways in intervention, starting at an early age, to help the child understand
his/her own feelings and to acquire means to express those.
The issue of family members having problems communicating with the
child might be an indication to directly involve these persons in intervention
if possible and thus help them understand the prerequisites to successfully
communicate with an AAC-user.
More intense involvement of the parents to children with complex communication needs from the beginning of intervention and encouraging the
parents to explain the challenges they are facing in their daily communication with the child could aid to supplying a child with a communication aid
that not only is useful in dedicated situations, but also within the family’s
life world.
143
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Appendix 1
Desiree – a longitudinal case study
(Based on a previous publication: Pickl, 2005)
Desiree has been followed during her first four school years in elementary
school and her first two years of middle school, all spent in inclusive classrooms, thus, corresponding with the Austrian school system, between age six
and twelve. During that time she was using various modes of communication, including vocalizations, her individual gestures, low tech communication aids (a picture symbol communication board and –album) and technical
devices, first with recorded speech, later a high tech device with synthetic
speech processing.
Communicative and physical situation
Desiree was born in Austria, following normal pregnancy and birth. At the
age of 18 months the brain malformation schizencephalia had been diagnosed, which was the reason for a right side hemiparesis, a moderate intellectual disability as well as a severe impairment regarding the speech- and
language development. Desiree showed signs of oral and verbal apraxia: the
oral component manifested itself in impaired oral motor movements with
lack of saliva control, the verbal component included symptoms typical for
this diagnosis; a few phonetically more complex words, especially when
there was an emotional aspect to them, were articulated earlier and more
reliably and consistently than phonetically less complex words (Duffy,
1995). The parents reported that at the age of four years Desiree began to
speak her first words, but could not retrieve these words a few months later.
In the following years she only managed to articulate the words “Mama”
(mom), “Papa” (dad) and “Oma” (grandma), but needed lots of groping and
searching to achieve a somewhat correct outcome. At the age of 13 months
Desiree had made her first aided steps; her unsupported walking later on was
marked by significant insecurity and frequent falls, the gait appeared uncoordinated. Today Desiree is able to walk fairly effortless and to manage
stairs. However, the function of her right hand is still too limited to allow for
signing as the preferred mode of communication, although the left hand frequently is used to augment or clarify messages.
Schooling
Throughout her school years (after four years in elementary school she attended an inclusive middle school) Desiree has been mainstreamed, following a special curriculum and supported by a special teacher who is responsible for the students in need of special support and thus is constantly present
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in the classroom in addition to the regular classroom teacher. She has always
been well accepted by her non disabled peers.
From the beginning of her schooling Desiree had shown good visual
skills, regarding both discrimination and symbol recognition. More of a
problem was the auditive area, discrimination of speech sounds remained
difficult for her. Despite intensive training during her four years of elementary school she had not acquired functional reading or writing skills, aside
from recognizing and being able to spell a few familiar and well trained
words. Although these skills continued to improve in the course of the last
school years, they remained too limited to allow for spelling as the only
mode of communication. At the beginning of Desiree’s first school year she
used one word utterances and short phrases, but aside from the three words
mentioned above, the names of her brothers (articulated incorrectly, though
understandable for communication partners who were familiar with the actual names) and the name of her dog her utterances were nearly unintelligible. Her vocalizations were mostly reduced to vowels, which were used incorrectly as well as inconsistently. In addition to the symptoms of verbal
apraxia the oral component manifested itself in reduced control over tongue
movements and saliva flow as well as in impaired sensation in the orofacial
area.
Introduction of an AAC system
Soon it became obvious that an AAC system was needed to help Desiree
communicate with peers, teachers and caregivers in her group home, where
she spent the time after school for homework supervision and leisure activities. Before she had entered school no mode of AAC had been introduced to
her, she communicated via ideosyncratic gestures and rudimentary vocalizations. Although her parents most of the time were successful in interpreting
their daughter’s communicative attempts, they knew times of frustration on
both sides of the communication partners when Desiree felt misunderstood.
Both agreed immediately when the speech language pathologist (SLP) suggested to introduce an AAC-system in addition to continue working on Desiree’s verbal speech. It is an important goal of AAC - whatever system is
chosen – to facilitate and increase its user’s active participation in every day
life situations (Beukelman & Mirenda, 1998), and this goal also was in focus
when the optimal communication system for Desiree was considered.
Regarding her cognitive and visual discrimination abilities she had appeared to be a candidate for the Bliss symbols communication system
(Gangkofer, 1993; Adam, 1996); the main reason why the decision fell in
favor of Picture Communication Symbols (PCS, Mayer-Johnson, 1982) was
that it would be easier for her classmates to comprehend her messages as
long as they were not able to read the words printed above the symbols. Due
to system inherent reasons it was not possible to include the whole class into
the symbol acquisition, which would have been the ideal situation. If an al157
ternatively communicating child is to be successfully included, not only the
adults who are around the child, but also the fellow classmates need to be
familiar with the child’s system (von Tetzchner, Brekke, Sjothun & Grindheim, 2005). Not only is it of importance what meaning a symbol or sign has
for the child who uses it, but also how that signal is interpreted by the communication partners (Lindstrand & Brodin, 2004a).
It turned out, however, that in communication with her peers and brothers Desiree rarely needed her communication aid, somehow she could make
herself understood using her pantomime like gestures and few vocalizations.
With this behavior the girl was no exception: Generally young aided communicators tend not to use their communication aids when interacting with
their speaking peers, they rather wait for them to initiate the conversation or
for being asked closed questions which can be answered with either approval
or disapproval (Clarke & Kirton, 2003). Situations when she did rely on her
communication aid were during communicative interactions with her teachers (e.g., commenting a certain subject), and when she was talking to the
whole class.
AAC in inclusive education
During all her school years Desiree had benefited from having been mainstreamed within a regular class. However, McNaughton (2003) raises the
question whether non speaking children will receive sufficient language
experiences and role models regarding their alternative mode of communication in inclusive settings. Canada, where McNaughton lives, is one of the
countries with the longest tradition in inclusion of children in need of special
support (the same is true for Sweden, which through a long tradition in the
social welfare area also has the goal to include children in a “school for all” Brodin & Lindstrand, 2004).
Children acquire language primarily by using it and by being among
persons who in this particular language are more competent than they are,
that is in an implicit way (von Tetzchner & Grove, 2003). Unlike with children from a foreign language background a disability may prevent development of verbal language even in an optimal and supportive environment,
which implies that the child with such a disability will need an alternative
and augmentative mode of communication. In order to develop to a person
who in that mode is successfully communicating, he/she will need role models just like the speaking child does - in this case persons who also are users
of AAC and in their modes are successful and efficient communicators. For
Desiree during her years in elementary school these persons had been her
teachers and her SLP, no peer could function as a role model. She had not
been the only alternatively communicating child in her class, but the other
pupil was a child with multiple physical and cognitive challenges functioning at the pre-symbolic level, who thus could not serve as an active communication partner for Desiree. Consequently she had acquired the use of her
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symbol system not in a natural context, but in specially constructed situations, that is in an explicit mode, not unlike someone learning a foreign language without being in the country where that language is actually used.
A study about what successful adult users of high tech AAC consider
important for facilitating learning their systems reveals opportunities for
interaction as a key to long-term success, but also shows the participants’
acknowledgement of meeting other experienced AAC users to have role
models of what could be achieved, to learn specific techniques and to have
moral support from persons who are sharing similar challenges (Rackensperger, Krezman, McNaughton, Williams & D’Silva, 2005). Also von
Tetzchner et al. (2005) stress the importance of role models among peers
who can provide a support for language development. Vygotskij (1986) uses
the term scaffolding, a scaffold built by the environment to facilitate child
language development.
Von Tetzchner et al. (ibid) suggest, however, to create situations where
role models using AAC are available rather outside the school time, since the
advantages of inclusive education outweigh the constant presence of alternatively communicating peers. Being part of a regular class means to be exposed to a greater variety of positive as well as negative social and emotional
experiences than it might be the case in the sheltered and mainly adult centered environment of a special setting; as a consequence the mainstreamed
child has more opportunities to learn how to react to these experiences using
his/her alternative mode of communication. It is crucial, however, that
teachers as well as speaking peers are competent in that AAC-mode, that is
they should know the system the child is using, be it signs or symbols, and
integrate it in class work as well as leisure activities throughout the day and
in natural contexts. According to von Tetzchner et al. (ibid) that competence
is the most important prerequisite for successful inclusion of a non speaking
child. Alternatively communicating children require a more detailed planning and a higher amount of support for their communicative development
and activities than children who develop verbal language. Similarly, Brodin
and Lindstrand (2004) point out that children with a disability show the same
pattern in their communicative development as non disabled children, but
due to physical, psychological, social and emotional issues are in need of
additional help and support.
Another prerequisite for successful integration of a non speaking student
into a regular classroom is collaborative teamwork of parents, teachers and
therapists to meet the individual communicative needs of that student (Hunt,
Soto, Maier, Muller & Goetz, 2002). The whole team needs to understand
the meaning of the AAC-system for a given child and be able to generate
opportunities for further communicative development (Granlund, Terneby &
Olsson, 1992). Each team member should be aware of his/her role in teaching skills the child needs to effectively use the AAC-system and know about
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strategies to do so. All these demands can mean a huge challenge for a team
in an educational setting.
Changing communication needs
Desiree’s main communication system were picture communication symbols
(PCS, ibid). Due to her excellent visual memory she easily remembered the
symbols and the vocabulary expanded quickly. For Desiree translucid and
even opaque symbols such as those representing non iconic words (Baker,
2004) were less of a problem, she usually remembered their meaning once
she was provided with sufficient explanation. Her first communication aids
were a two folded, later a three folded board in A4-format with PCS (created
with the computer program Boardmaker™) and photos, when for example
persons or pets were represented. Such a board is difficult to carry along for
any ambulant child, even more so for a child with hemiplegia and consequently only one fully functioning arm and hand. To supply Desiree with an
aid that would be readily accessible she got a topic orientated album that
fitted in a belt bag, again with PCS, photos and cutouts (e.g., for food). That
album was traveling along wherever Desiree was going and was used for
spontaneous communicative purposes, while the board, set up in the Fitzgerald key with the symbols placed according to the German syntax (Pickl,
1998), was still used in classroom or therapy situations to practice the use of
correct word order. While Desiree most of the time could get her messages
across, her utterances resembled those of a language impaired child: she
either pointed to one single symbol or offered a loose sequel of symbols
which did not correspond to the usual word order; outside specially designed
training situations she never used prepositions, although she understood their
meaning and was able to perform tasks requiring the understanding of prepositions without difficulties. This phenomenon can be observed with many
non speaking children (e.g., Soto, 1996) – as soon as they have become able
to use enough vocabulary in their AAC-system to formulate their own messages, language related problems, e.g., in syntax, become obvious which
naturally had remained unnoticed before the children had been supplied with
a communication system.
Another phenomenon, however, that can be observed with many children
using AAC (e.g., Beukelman & Mirenda, 1998; Sevenig, 1994), was also
true for Desiree: her verbal utterances started to increase significantly once
she was supplied with an augmentative and alternative mode to communicate.
In speech therapy and during classroom activities Desiree occasionally
used a Tech/Speak™, a school owned voice output device with recorded
speech, with overlays that were tailored to fit certain situations, games or
subjects. There, due to the limited number of accessible fields, in case of
that device 32, parts of a phrase or at least the word with the corresponding
article had been recorded with each symbol. Desiree always enjoyed using
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the device and her increased possibilities for active participation due to the
voice output feature.
The decision for a high tech communication aid
Over the years Desiree’s communication needs had become so complex that
neither her board nor her album were sufficient any longer. The need for a
more appropriate system became even more obvious when Desiree was
transferred to a middle school with inclusive education and suddenly was
confronted with new teachers and peers who have not known her for years as
it had been the case in her old school. Solving the problem by adding additional pages to her album would not have been practicable since the increase
in volume would have led to difficulties in handling.
After looking at several devices the team finally decided on the Power
Talker™ to best serve Desiree’s present and future communication needs.
The Power Talker™, corresponding to the Pathfinder™ in English speaking
countries, is a high tech device with synthetic voice output and a constant
overlay with icons, allowing the user to produce individual messages. Desiree was able to use the index finger of her left hand to directly activate the
icons either on the overlay or on the display above, which in the future
would guarantee a fairly high communication rate (persons who are unable
to select the icons via direct access could use the scanning mode via an externally placed switch; that feature, however, was irrelevant for Desiree).
Another criterion that determined the choice for that device was its computer
compatibility; Desiree could for example produce a text using her Power
Talker™, save it and later print it out via a PC – an important feature considering her future.
In Austria insurances usually cover most of the expenses for mobility
aids, but so far there is little to no reimbursement for communication aids.
Furthermore are the laws for financial compensation different from one
province to the other. There are institutions which offer counseling and lend
communication aids for a trial period, generally not exceeding more than a
few weeks; after that period the aid has to be purchased from the vendor who
is representing the producing company. At the time when the Power
Talker™ was purchased for Desiree in Austria it costed around € 12.000.-,
so the problem how to finance the device was a major issue. In short, it took
almost two years and numerous petitions to various institutions and possible
donators till Desiree finally owned her device. A considerable amount had
been paid by the family, and the manufacturer had reduced the total amount
and not charged an additional fee for the introductory session.
Austrian politicians like to point out the achievement of the so called
nursing money (in German “Pflegegeld”): the monthly payment depends on
the amount of care the client needs, and that amount for Desiree, despite her
hemiplegia and intellectual impairment, was relatively low. So the parents
could not be expected to finance the communication aid out of that source.
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Desiree’s major challenge was that she “just” could not talk - that alone
should have been reason enough to recognize that she had the potential to
become the more independent from again costly care in her future the more
efficient she would be in her communication.
Learning a new communication mode
Using the Power Talker™ also meant for everyone who would be working
with Desiree - for now her parents, her special teacher and her SLP – to
gradually get acquainted with Minspeak and the German word strategy.
Minspeak is not another symbol system, but a strategy to encode a vocabulary using a limited number of icons, created by the U.S. linguist Baker
(1982). He had called the symbols used with this strategy icons to distinguish them from other picture symbols, although the word icon from its
Greek origin means just that – picture. Baker had been inspired by the hieroglyphs used in the Maya culture, which already had contained the idea of
encoding (e.g., “corn” + “millstone” = “flour”). By encoding certain sequences of icons the system allows access to a large vocabulary without ever
changing the overlay. The sequences of icons which are used to create words
are based on semantic compaction (Baker, ibid), so the visual aspects of a
certain icon is less important than its semantic content. Communicating via
icons can easily be combined with communicating in the spelling mode.
Minspeak is used with speech generating devices which are referred to as
talkers, which come in various capacities and which via word strategy and
speech processor allow their user to produce individual messages.
Skilled Minspeak users can be observed to be highly efficient and successful in their communication (Rackensperger et al., 2005). In this mode,
however, a message cannot be expressed just by pointing at symbols; the
user has to follow a certain sequence in the choice of icons to achieve the
desired output, therefore careful introduction and continuous training is required. Most of the vocabulary is already stored within the device, but the
user needs to learn how to access the words or phrases. His/her retrievable
vocabulary will grow over time depending on the user’s cognitive and memory capacities and the amount and intensity of training. The specific icons on
the talker-overlay just serve as memory supports - learning how to use the
codes can be facilitated by using mnemonics (cribs) - theoretically other
symbols or pictures could be chosen as well. Thus Minspeak itself is not
dependent on special icons; e.g., also persons who are communicating via
Bliss-symbols are using the system successfully, as long as the symbols are
placed according to their semantic aspects.
Since Minspeak uses the principle of semantic encoding (Baker, 1982) it
is important that the symbols rather represent the meaning of categories than
certain items. So for example is the apple connected with the category food,
the bed with everything connected to sleep, Da Vinci’s study of human proportions with physical needs, etc. This so called secondary iconicity allows
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access to a large vocabulary in spite of a relatively small number of pictures,
in this case Baker’s icons; with all the icons and function keys the overlay of
the Power Talker™ consists of 128 squares.
When Bliss had created the symbols which later were named after him it
was his intention to make them relevant for as many users as possible, independent of their linguistic, national, cultural or social backgrounds (Adam,
1996; McNaughton, 2003). Some of Baker’s icons, however, clearly demonstrate his U.S. American heritage and needed adaptation in the German word
strategy. E.g., the icon which also is used in the verb “to be” shows the
marked signature of John Hancock as he had put it below the declaration of
independence – “make your John Hancock” is a classic saying in the U.S.
meaning as much as “sign here”. This icon was changed by the pedagogues
and linguists who had been working on the German word strategy to the
name “Karl Otto”; other German speakers from for example Austria or Switzerland would associate “Karl Otto” with a name typically used in Germany,
but being quite unusual for other German speaking countries.
A German overlay further differs from an English one because of the necessity to place the icons to correlate with the letters as they appear on the
German keyboard; so for example is the letter “E” found in the icon representing the German word “Ecke” (corner), the letter “U” in the icon representing “Umwelt” (environment), etc.
The German language is a combination of around 250.000 words of everyday language and ca. 85.000 foreign words (Zimmer, 2005). The German
word strategy for the Power Talker™ contains a vocabulary of about 3000
words which have been chosen according to communicative and linguistic
aspects. This already existing vocabulary can be expanded using free storage
capacities of the device. Baker (1982) had chosen the principle of semantic
encoding instead of pictures representing a concept not only because of the
impossibility to have each term represented by a picture, but also because of
the fact that the majority of words used in daily communication is non
iconic.
According to research our communication consists of 78 percent core
vocabulary of about 400 words and only 22 percent fringe vocabulary (Banajee, Dicarlo & Stricklin, 2003; Hill & Romich, 2000). Studies show that
people, even when conversing about quite different topics, with very few
exceptions are using core vocabulary; these findings led Baker (1982, 2004)
to the assumption that people are able to communicate in almost all situations using just that core vocabulary. According to Baker (2004) the Minspeak based talkers had been programmed following those research outcomes as well as studies which dealt with what kind of topics people are
talking about in certain situations and which vocabulary was used in high
consistency (Adamson, Romski, Deffebach, & Sevcik, 1992; Marvin, Beukelman & Bilyeu, 1994). The results of Hill’s study (2001) showed that 90
percent of the core vocabulary is made up of non iconic words, and accord163
ing to the study of Banajee, Dicarlo and Stricklin (ibid) less than five percent
of all words used by small children are iconic. Baker (2004) refers to these
studies when he questions the meaningfulness of using picture symbols like
PCS with non speaking small children: If children are using mostly non
iconic words in their language it is only logical to conclude that their language cannot only be represented in pictures.
For Desiree the necessity to provide her with a sufficient vocabulary had
been the main reason for changing to Minspeak; the issue of the representation of non iconic words had been less of a problem, since her cognitive
situation allowed her to understand the meaning of the symbols once their
origin had been explained to her. As soon as Desiree owned her Power
Talker™, the whole team including herself had received a four hours introduction to the system by the contact person from the manufacturer who had
sold the device. Eight months later everyone met for a follow up to deal with
certain problems and questions that had arisen during the work with the
talker over the year.
A new way to represent meanings
As it had been predicted changing from PCS to the icons used with the
Talker was not a problem for Desiree, so there was no need to adapt the
overlay. To teach Desiree the semantic content of the icons had not been a
problem either; she already was familiar with superimposed concepts and
soon remembered which categories and words she could find behind the
icons. Another feature of the Power Talker™ besides voice output is a dynamic display, where the input can be seen in words and pictures. Some of
the icons also serve as indicators of concepts; so the user can find various
foods behind the apple, drinks behind the glass of juice, animals behind the
zebra, etc., which then appear in the line of the display and can be activated
by touching the picture. Without that semantic understanding a learning of
the codes via mnemonics would be impossible: E.g., in the German word
strategy the preposition “under” is combined with the umbrella; here the
mnemonic would be: “Under the umbrella I will not get wet.” Unlike with
PCS, which only represent the word that is pictured in the symbol, the user
now needs to think in wider concepts: So for example the icon of the sun not
only represents the sun itself, but in the German word strategy also is used in
the codes for “yellow”, “warm”, “morning”, “day”, “Sunday”, “lion”, “to
heat” or “to shine”.
A person who is able to spell the desired word in the ABC-mode will see
the icon sequence appear on the screen once the word (given it is already
stored in the device) is spelled correctly; some adults who are learning Minspeak report that they are using that feature to memorize new words (Rackensperger et al., 2005). Due to her deficits in phonemic awareness and consequently in spelling that has been no learning option for Desiree. There is
the possibility to store whole sentences or phrases; that, however, is not the
164
original intention of Minspeak which should rather facilitate free and independent communication. Desiree so far has used this possibility only for a
few introductory sentences regarding her person and her pet.
Wherever a semantic connection could be built it was applied by the linguists who had translated the word strategy into German. Where no semantic
connections could be found it was tried to use phonetic connections. E.g., the
preposition “instead of”, in German “statt”, is built with the icon representing a city, in German “Stadt”, thus sounding just the same. That method,
however, does not take into consideration that many persons with complex
communication needs, and here Desiree is no exception, have difficulties in
their phonemic awareness, and sound similarities in words of different meanings are not obvious to them. In that case other methods need to be found,
like thinking of different mnemonics or relying on the user’s ability for motor learning. So a communication aid based on Minspeak and semantic compaction strongly is connected with the language the system is used in; it
needs AAC specialists as well as linguists to create a Minspeak based word
strategy in a certain language. Symbols like the ones used in Bliss or PCS, to
refer to two well known systems, “just” need to be translated into a new
language (aside from some culturally based differences, which mostly can be
adapted) and then can be used according to the syntax of that language; that
does not work with Minspeak.
Acquisition of grammar and syntax
There had been concerns how well Desiree would master the grammatical
prerequisites which are needed to encode the words and successfully use the
Minspeak strategy. Although Baker (2004) stresses the importance of motor
learning in remembering the sequel for each word – he refers to the studies
of Windeck and Laurel (1989) and Hill (2001) – it hardly is possible to produce every possible word and phrase only based on motor memory. Successful use of the German word strategy for the Power Talker™ not only requires knowledge about the codes - the activation of up to three icons can be
necessary to produce one single word, followed by the icon indicating person or number - , but also knowledge about the grammatical part of speech
and how it can be produced on the talker. E.g., a word only becomes a verb
if the sequel ends with a person, an adjective needs to end with one of the
three icons representing a victory stage (with the second rank indicating the
comparative and the first rank the superlative), a noun with the icon representing an Indian chief (or the group of chiefs in case of a plural word) and
an adverb with the icon that shows a tower. Prepositions, however, instead of
having a characteristic ending, always start with the icon representing a
cloud. Thus at least rudimentary syntactic knowledge is an absolute necessity.
Although everyone involved was concerned regarding Desiree’s language prerequisites it turned out that by continually using the talker she was
165
experiencing a tremendous boost in her understanding of syntax and grammar. Within only six months she was able to tell which word was a noun and
needed the corresponding ending, and which one was a verb and needed to
have a pronoun at the end in order to appear correctly. She started using
three word sentences when she wanted to tell something, although not always in correct syntax, but she had a voice to get her messages across and
felt good about it. Using the correct articles, with the exception of some well
trained nouns, remained difficult for Desiree. In English the article never
changes and thus easily can be represented via arbitrary symbols. In German,
however, the articles differ depending on the three genders and also change
according to the noun’s case. Therefore they frequently are omitted on
communication boards and filled in by the communication partner who verbalizes the message of the person who uses AAC. This had been the case for
Desiree as well, but her language impairment had prevented an internalization of which article belonged to which noun. Now the voice output of the
talker was providing direct feedback of her utterances, instead of hearing the
automatically correcting and supplementing communication partner she
heard and saw what she herself was producing.
Desiree was seen by her SLP regularly for 50 min. each week, by far not
enough to acquire such a complex system. She was in the lucky position of
having an extremely motivated and dedicated special teacher, who had faced
the situation of having a student with complex communication needs in her
class with an open and positive attitude and early on tried to integrate the
Power Talker™ in classroom assignments, as well as having highly supportive parents. With the help of her teacher the device was used in class whenever possible, it was Desiree’s voice for class assignments, presentations to
various topics as well as in role plays.
Desiree’s special teacher soon noticed that also the other students in the
class who were in need of special support and showed deficits in the language area benefited from the syntactic rules the talker required: E.g., to put
a verb into past perfect, in the German word strategy the icon of the dinosaur
needs to be placed between the starting icon and the pronoun indicating the
person, to produce perfect tense on the other hand the middle icon is the one
with the broken egg. The subjunctive is marked by the egg which is placed
right at the edge of the table, the gerund by the falling egg, so the system
provides grammar in a visualized mode. The phenomenon that speaking
students may profit by an AAC system as well has already been documented
in studies: Using an alternate form of language not only supports the phonological perception, but also other linguistic areas which serve as the basis for
successful acquisition of reading and writing skills (Brekke & von Tetzchner, 2003).
166
Intervention strategies
New situations always offer valuable learning possibilities (Nelson, 1996),
and such situations were used whenever possible to facilitate an as natural as
possible learning process. E.g., when new students came to the school for
supervised teaching Desiree’s role was to conduct an interview with them;
that had been so exciting for her that learning how to ask questions and respond to questions was sort of a by product. The SLP’s role was to help Desiree understand why words are encoded in a certain way or can be found
behind certain icons (to build up the important mnemonics), to practice sequences for frequently used phrases together with her and to help her acquire
specific rules.
To achieve those goals usually games or role plays were prepared and
Desiree was presented worksheets with the icons she would need in the correct order; the worksheets then served as patterns during the games and were
used for further exercises to practice certain strategies. Creating activities to
facilitate Desiree’s interaction with others using her Power Talker™ served
two major purposes: One was connected with herself, being the type of
learner who prefers acquiring skills in a playful mode to drill situations.
Other persons who use Minspeak as their mode of AAC have reported that
they clearly have profited from systematic drill sessions when learning Minspeak and word strategy (Rackensperger et al., 2005) in addition to practicing in natural contexts, but for Desiree it worked best when practicing and
learning new strategies were embedded in creative and playful activities.
The other purpose was connected with her potential communication
partners, of whom only a minority (her family, special teacher and SLP)
could be considered as trained communication partners of persons using
AAC: According to Light, Collier and Parnes (1985) and Blackstone (1999)
untrained communication partners of a person who uses AAC have been
noted to dominate communicative interactions, provide few opportunities for
the person who uses AAC to initiate conversations, mostly ask yes/noquestions, frequently interrupt the person who uses AAC and focus on the
technology the person is using instead on the person and his/her messages as
such. As a result, the person using AAC tends to play a passive role with
initiating only few, if any interactions and using only limited linguistic forms
(Blackstone, ibid). Involving Desiree in as many communicative interactions
as possible and at the same time providing her with strategies to successfully
master these interactions intended to make her less dependent on the skills of
her communication partners regarding her own parts of the interaction.
While it could not be prevented that new communication partners at first
were more fascinated with the communication aid itself than with Desiree’s
messages, this was only true for the initial stage of the interaction the more
naturally Desiree was using her aid. Many untrained communication partners
are not aware that a person who uses AAC needs extended conversational
167
pause time in order to create his/her response (Blackstone, ibid); practicing
frequently used questions, phrases and statements was aiming at increasing
Desiree’s conversational rate and thus making her less dependent on the
other person’s sensitivity to tolerate increased pause time during the conversation. Persons who realized that she was capable of producing her own
messages were more likely to ask open-ended questions instead of just allowing her to respond with “yes” or “no”, which made the communicative
interaction more equal and less dominated by the verbal speaker.
One strategy that is recommended to communication partners of persons
who use AAC, to model the use of the AAC system during the conversation
(Kent-Walsh & Light, 2003), for natural reasons in this case remained limited to a restricted number of communication partners, that were the persons
who were familiar with Minspeak and the German word strategy. As a consequence another goal of intervention was to make Desiree as independent as
possible of modeling in frequently occurring conversational situations.
A vocabulary to meet the communication needs
Although the team which was involved in working with Desiree had been
provided with a CD to download the icons, creating the working materials
was considered highly time consuming. On the other hand are those preset
icons on the device’s overlay and the pre-stored vocabulary among the system’s biggest advantages: unlike with devices which play back recorded
speech there is no need to change recording and overlay according to the
situation, nor does the user need to navigate through categories as it is the
case in a dynamic display in order to find a certain word. When the user is
ready to use spelling in his/her communication (either by itself or in combination with icons) he/she can immediately do so, again without changing the
surface, because the ABC mode just needs the touch of an icon to be activated. For people who are involved with the person in need of AAC this
means that at least to a large part they are freed from the responsibility to
choose the vocabulary for or together with the client, the vocabulary is already there and just needs to be retrieved by using the codes that come with
the word list included with the purchase of a Minspeak based talker. Teachers, therapists and caregivers do not have to create overlays or go through
the cut-and-paste process as it is the case with a low tech communication
aid; however, they will need that saved time for creating icon based work
sheets and will further need to plan lessons carefully in order to help the user
of the talker to participate according to his/her skills.
Although Baker (2004) stresses the efforts that had been put into creating the German word strategy for Minspeak, quite trivial words were found
missing in all of the categories, words like “farm” or “scissors”, to name just
a few examples, while other words like e.g., “mascara” were included in the
pre-stored vocabulary and obviously considered to belong to the core vocabulary. Equally missing to a large degree was vocabulary regarding sexu168
ality and body parts (especially the female ones) as well as body functions
related to that issue – definitely a hot topic among students in puberty. That,
however, rather seems to be a U.S. - specific phenomenon than a specific
feature of the Power Talker™; when installing the Boardmaker™, also of
U.S. - origin, on the PC, the user is specifically asked whether he/she also
wants to install the library with the symbols referring to sexuality.
However, neither have speaking persons the right to determine or restrict
the vocabulary of others who are using alternative modes to communicate,
nor will true inclusion be guaranteed if a person with complex communication needs does not have the chance to talk about the same topics as his/her
speaking peers. Being equal also includes that a child, whose communicative
development is following an alternative path, has a certain communicative
autonomy and can decide for him/herself, independent of the help of others,
what he/she wants to talk about (von Tetzchner & Grove, 2003).
Creating new vocabulary
During the first introduction to the system the participants had been shown
how to program new words into the device or add pictures to the dynamic
display – the device offers additional storage space. That, however, cannot
be done in the moment a word is found missing in a given situation: to make
learning easier for the client and to keep up the Minspeak principle it is important to stick to icons which in their semantic aspect suit the words of that
category. The next step is to find a sequel of icons that is not yet occupied in
that sequence, then the grammatical structure of the new word (noun, verb,
adverb, adjective, etc.) needs to be identified. Next the form of conjugation
needs to be programmed into the Power Talker™, and finally the word has
to be spelled phonetically (which usually takes several trials), so the synthetic voice will pronounce the word correctly and as naturally sounding as
possible. This job is fulfilled by Desiree’s father as due to time constraints
neither the special teacher nor the SLP can go through the process of adding
new vocabulary or pictures. Missing words are written down in a special
note book and then programmed into the device at home.
Being dependent on a high tech device
Without any doubt Minspeak is a very powerful strategy for many persons
with complex communication needs. One of the major disadvantages of
Minspeak, however, is that the strategy cannot be used without a high-tech
device; the sophisticated system is dependent on its implementation in one of
the extremely costly so called talkers with synthetic voice output, a loaded
accumulator and all its functions working well. (When Desiree’s device had
stopped working after having fallen to the floor and had to be sent in for
repair she was provided with another Power Talker™ by the manufacturer;
otherwise she definitely would have lost a lot of her already acquired skills
during the weeks she was without her talker.) A low tech overlay resembling
169
the talker surface is existing, but to use it is a rather complicated process and
requires perfect reading and visual discrimination skills, since the writing is
very small and visually confusing with differently colored words representing the various meanings printed into each of the squares. A person who is
able to handle such a board would probably be better off to just spell out
his/her messages or point to phrases and thus use a far more direct approach.
That high tech dependency is much more of a problem for an ambulant
person than for a person who is using a wheelchair, where the device can be
mounted to be readily accessible for the user, either for direct access or for
use with a scanning mode. For someone mobile like Desiree, who is quite
fragile and due to her hemiplegia has restricted use of her arms and hands, it
is enough of a problem to carry the two kg device in her backpack to and
from school every day (she independently uses public transportation and has
to change from bus to tram).
Having the talker with her all the time, as it ideally would be the case for
a communication aid, therefore is impossible. According to Beukelman and
Mirenda (1998), one prerequisite for communication is having someone to
talk to and something to talk about – which for Desiree is absolutely the
case. Problems arise when it comes to Brodin and Lindstrand’s (2004) postulate regarding technology, stressing the importance of a child’s permanent
access to his/her technical device, if it is to become a relevant communication aid in the child’s daily life; that permanent access is illusionary because
of the reasons mentioned above.
Future perspectives
How frequent and to what degree Desiree will be using the talker in her life
after school is still open and certainly dependent on what she will be doing
and the amount of support she will be getting. Not only is there a need of an
adequate pool of professionals who are specifically trained in the rapidly
changing area of AAC, we also have to be aware that individuals who use
AAC have an ongoing need for professional support, even though the kind of
services will be changing as the individuals change from educational systems to adult life (Lund & Light, 2001). For Desiree the team is hopeful that
her spontaneous use of her Power Talker™ and her ability to operate it on
her own will increase with her increasing skills, and that when she will be
leaving school the device will be an integral part of her communication.
Desiree is in the fortunate situation to be able to express herself, though
in a limited way, without the help of techniques (via gestures, drawings and
spelling attempts), also verbalizations and her active vocabulary are continuing to increase. While communicating with her talker she not only tries to
verbalize the words she is activating, but also the accompanying articles;
with her apraxia of speech she benefits from the constant visual and acoustic
feedback the device is providing. It is one of the goals in the near future to
connect Desiree with other competent talker–users. There is a limited target
170
and user group; the number of users might change with different insurance
politics. A language, including alternative forms of communication, only
will become truly meaningful if experienced and spoken in its natural environment; for alternatively communicating individuals that environment can
consist of other persons using AAC and verbally speaking persons who are
considering them as equal communication partners in their interactions.
Outcomes
This long term single case study reveals four major outcomes, which due to
the study’s nature have to be seen as individual and need not transfer to similar results for other persons who use AAC:
1
When a graphic symbol system is chosen as communication
mode the transparency of that system to untrained peers may not be the primary election criterion, if the person who uses AAC has other means to get
his/her messages across and not solely has to rely on the graphic symbols.
Although Desiree would have been a candidate for Bliss-symbols, that system had not been chosen in favor of PCS, which had been considered more
transparent for Desiree’s peers while they had not yet acquired reading
skills. In interacting with her peers she rarely used her symbols, though,
preferring other modes of communication like gesturing, vocalizing and
responding to closed questions. This behavior is confirmed in a study regarding interaction patterns of young children using AAC by Clarke and Kirton,
(2003). The less transparent and less iconic Bliss-symbols might have served
Desiree better at a later stage than PCS, which at the beginning of intervention had mainly been chosen to facilitate her interaction with peers.
2
The fact that the majority of the words we use throughout the
day are non iconic (Banajee, Dicarlo & Stricklin, 2003) and therefore cannot
be adequately represented in picture symbols (Baker, 2004), appears to be
less of a problem for individuals with good symbolic representation skills
(DeLoache & Burns, 1994) than the growing need of increasing vocabulary
with a system that uses highly iconic symbols.
3
An individual’s difficulties in the areas of language and syntax are not necessarily contradictory to supplying that individual with a
speech generating device using Minspeak and word strategy and thus requiring certain grammatical knowledge. The user might acquire the necessary
skills easier with the double feedback (visual and auditive) the device is providing than by using a low tech communication aid (where the communication partner usually verbalizes the messages in adequate syntax) or by activating a communication aid with recorded speech (where whole sentences or
phrases usually are pre-stored). Desiree’s deficits in the areas of language
and syntax had been a real concern for the team at the time the device was
chosen as her future communication aid. It turned out, however, that using
the Power Talker™ and internalizing the rules the device requires actually
was helping her in acquiring syntactic and grammatical knowledge.
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4
There is an obvious need for sophisticated high tech communication aids that allow easy access and transportation also for ambulant
individuals in need of AAC. Most manufacturers seem to have in mind primarily wheelchair users (undoubtedly a high percentage of potential customers), for whom due to individually adapted mounting systems permanent
access to the technical communication aid is possible as long as that individual is seated in his/her wheelchair (Goossens’ & Crain, 1992). For ambulant
persons using AAC that access is likely to be limited to situations when they
are positioning themselves near the place where the high tech communication aid is stationed. Wheelchair users experience similar problems in situations when they are not seated in their chair (Rackensperger et al., 2005). It
is indeed an ethical issue to ask the question who is responsible for the development of aids whose target group is a relatively small one (Brodin &
Renblad, 2000), since it means a risk for any private company to produce a
device for a limited market. Therefore few companies are dominating the
market with the consequence that users might pay more for one and the same
device, if that product had to pass various distributors and vendors who all
are interested in a certain profit.
Conclusions
All things considered, the Power Talker™ at present might be the best solution to serve Desiree’s communicative needs. However, a new device alone,
even one that technically is highly sophisticated, does not necessarily lead to
an improvement in the communicative and social situation; each mode of
alternative and augmentative communication is bound to fail without the
collaboration of everyone who is involved with the user of that communication mode (Granlund, 1999), and that is equally true for Minspeak and the
use of a device which requires word strategy. Without Desiree’s own motivation, the willingness of her parents to try a new mode of AAC (although
they already had developed a form of communication that had more or less
worked well for them) and acquire the necessary technical background
knowledge (e.g., to program new vocabulary into the device), without the
teacher’s motivation to integrate the talker from the very beginning, and
without the SLP being able to work with Desiree on a regular basis the result
probably would have been less positive.
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Appendix 2
Interview guide
Communication with your child
How do you experience the communication between you and your child?
How does your child communicate with you (body movements, gestures,
signing, vocalizations, words or phrases, communication aids)?
Is your child communicating with everyone in the family in the same way
when he/she is without the communication aid?
How do you communicate with your child (using complex vs. simple language, accompanying gestures, etc.)?
Is your child able to communicate to you all his/her wants, needs, excitements, worries, etc.?
Can he/she ask questions?
Can he/she tell about an event?
Can he/she express discomfort or complaints other than by crying or face/body- movements?
What do you experience as the biggest challenges in the communication
between you and your child?
Which are the situations when communication between you and your child
works best?
Are there differences among various members of your family in regard to
how the communication with the child is experienced / seen?
Questions regarding the communication aid
Does your child use a communication aid?
If yes: high or low tech? (Communication board or –album vs. technical
device, or both)
What kind of communication aid?
173
What made you decide for that specific aid?
Who was involved in the decision?
Were advantages / disadvantages regarding that specific communication
system explained to you before the final decision?
If yes: by whom?
In case your child uses a technical communication aid: how was it financed?
Did you get help in finding ways to cover the costs for the aid?
Did your insurance cover parts of the costs for the communication aid?
When (age of your child) and where was the communication aid introduced?
By whom was the communication aid introduced?
Do you feel that you were trained sufficiently in communicating with your
child using the communication aid?
Who has chosen (or is choosing) the vocabulary / phrases (parents, teacher,
therapists, assistants,…, the child him-/herself)?
In case your child was (is) involved: how does he/she indicate to you / the
teacher / therapist, etc. what kind of vocabulary he/she needs for a specific
situation?
Is the vocabulary represented by photos, pictures, symbols, words, other?
Are you able to create new pictures / symbols / overlays, etc. for your child’s
communication aid yourself or do you need to rely on teachers / therapists?
Questions regarding the use of the communication aid
Is your child using the communication aid on a regular base? (Which could
be just at school, just at home, both, only with certain communication partners whom the child meets fairly regularly, etc.)
In case the communication aid is used at home: is everyone in your family
using it when talking to or playing with your child?
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Is the communication aid used in the same way with all members of your
family?
Is the communication aid used in the same amount with all members of your
family?
In case you notice differences: What do you think are the reasons for this?
(Issues of time / being less trained in using the aid, use of other means of
communication, communication is perceived more satisfying / faster, …
without the aid, rejection of the communication aid, …)
Which are the situations your child benefits most from using the
communication aid?
In case you can identify such situations: what are the advantages for your
child when using the communication aid as compared to being without the
aid?
Are there situations when your child hardly or never uses the communication
aid?
Reasons for not using the communication aid in certain situations (issues of
time, not practicable to use the aid in that specific situation, child can communicate relevant issues without using the aid, other)
Is your child communicating with everyone in the family in the same way
when he/she is without the communication aid? (Vocalizations, body language, gestures, signing, not using any specific mode at all, …)
Do you feel your child’s communicative ability aside from verbal speech is
improving by using the communication aid? (Initiating a conversation, turn
taking, etc.)
Do you notice an increase of verbal utterances / vocalizations when your
child is using his/her communication aid?
Do you feel using the communication aid facilitates your child’s communication with peers or his/her overall social inclusion?
Is the communication aid used in school / in the group home after school?
Do you allow / encourage other children to use your child’s communication
aid?
If yes: why? If no: why not?
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How do you experience the reactions of the public to your child’s communication aid?
Do you think others are encouraged to communicate with your child more
when he/she is using the communication aid or when being without the aid?
Tell me about the support you are getting from society in regard to your
child’s communication needs.
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Appendix 3
List of words related to the descriptions of the participating
children and their communication aids
Aphasia
Aplasia
Apraxia
Asphyxia
Aspiration
Associated movements
Ataxic cerebral palsy
Athetoid cerebral palsy
BNS seizures
Cerebral palsy
Diplegia
Dysarthria
Dysphagia
Femur bone
Flaccid paralysis
central language disorder, caused by lesions in the
sites responsible for perceiving and producing
speech and language, mostly in the left hemisphere
congenital missing of an organ or limb
inability to perform an action despite the absence of
a paralysis or weakness
complete stoppage of breathing caused by a blockage of the air passages
food going down the airway instead of the esophagus
involuntary movements of one or more body parts
associated with a voluntary movement of another
body part (e.g., opening the hand is associated with
opening the mouth), a frequent phenomenon in
cerebral palsy
central movement disorder caused by lesions in the
cerebellum, characterized by dysrhythmic, “robotlike” movements
central movement disorder, caused by lesions in the
putamen, cerebrum or cortex, characterized by involuntary, winding movements with varying muscle
tone
“Blitz-Nick-Salaam”-seizures: short seizure activities characterized by a brisk movement of the head
towards the chest
central movement disorder caused by lesions in the
motor cortex
cerebral palsy predominantly affecting the lower
extremities
central speech disorder resulting in lack of control
of the muscle system over the speech mechanism
swallow difficulty, mostly neurogenic
thigh bone, situated between pelvis and knee
paralysis caused by lesions in the bulbar system
(lower motor neuron), resulting in weakness and
low muscle tone
177
Hemiplegia
Hernia
Hippo therapy
Hydrocephalus
Liquor
Mitochondrial
Myelomeningocele
Myopathia
Nystagmus
Orofacial
Overlay
Quadriplegia
Scanning
Schizencephalia
Spasticity
Spina bifida
Tongue thrust
Torticollis
Sources:
cerebral palsy predominantly affecting one side of
the body
rupture; bulging out of a part of any of the internal
organs through the muscular wall
physiotherapy performed on the back of the horse,
using the distinct movements of the animal to either
build up or decrease abnormal muscle tone, while at
the same time the relationship between client and
horse may serve as a therapeutic facilitator.
abnormal enlargement of the head due to interference with the drainage of cerebral fluid
cerebral fluid protecting the brain
having to do with mitochondrias: tiny cell organelles built of proteins and lipoids
congenital hernia of the spinal marrow
muscular weakness
jerking eye movements, congenital or due to a disease of the nervous system
concerning the area of mouth and face
page inserted into a speech generizing device,
containing pictures or symbols to represent meaning
cerebral palsy affecting all four extremities, frequently associated with impaired head control
the AAC user is offered a number of choices and
selects the desired choice either by activating a
switch or signalling confirmation to a partner
rare malformation of the brain caused by a genetic
mutation, resulting in fissures between the two
hemispheres, leading to impairments of varying degrees, mostly affecting the motor and speech language system
paralysis characterized by high muscle tone and
stiffness
defect in the development of the spinal column
reflexive forward movement of the tongue, impairing the intake of food
abnormal twisting of the neck caused by injury or
infection of the muscle or nerve
Pschyrembel (2004) and Webster (1995)
178
Appendix 4
Description of the communication aids which are used by the
children in the study
BIGmack™ Single message communication aid with recorded speech. The
device is operated by pressing a big button and can also be used to activate
battery powered toys or appliances.
Graphic symbol system designed by Charles K.
Bliss (Bliss, 1965). Originally intended to serve as a universal language,
independent of the cultural, ethnical or linguistic background of its user, the
system became one of the first universal symbol collections to be used by
non speaking persons.
Example:
Bliss-Symbols
Go Talk™
Technical communication aid with nine locations to be used
with recorded speech.
Technical communication aid which folds up
like a book. The right side has eight clear plastic pockets to hold pictures or
small objects which can be recorded with appropriate messages, the left side
features four pockets to store the pictures.
Memotronic™
179
Picture Communication Symbols (PCS, Mayer-Johnson, 1982)
Picture symbols designed to represent a wide spectrum of themes. With all
the addendums for the PCS-software Boardmaker™ there are currently
around 10.000 symbols available (black and white vs. colored, full figures
vs. stick figures) with translations into many languages. Example:
High tech communication aid with synthesized
speech, equaling the Pathfinder in English speaking countries. The vocabulary is selected by activating sequels of icons, the underlying idea being semantic compaction, expressed in the so called Minspeak – mode (Baker,
1982).
Power Talker™
Super Talker™
Technical communication aid with recorded
speech. It can be used in a sequenced mode, but also to operate battery powered toys and appliances. Because one device can be used with grids with
one, two, four or eight locations it can be adapted according to the user’s
needs.
180
Step by Step™
Technical communication aid with recorded
speech that allows playing back messages in a sequenced mode by pressing a
big button on the surface.
Technical communication aid with recorded
speech on eight locations and different numbers of levels, depending on the
version of the device.
Tech / Talk™
Similar to the Tech / Talk, but with 32 locations. Both the Tech / Talk as well as the Tech / Speak are available to be
used in a scanning mode in combination with one or two external switches
and can be adjusted for environmental control.
Tech / Speak™
181