CALIFORNIA STATE UNIVERSITY, NORTHRIDGE
GROWING AND CHANGING:
PUBERTY AND THE MODERATELY RETARDED CHILD
A project submitted in partial satisfaction of .the
requirements for the degree of Master of Arts in
Education, Educational Psychology,
Counseling and Guidance
by
Gwendoline Hansen
May 1986
The Project of Gwendoline Hansen is approved:
Dorothy Doyle
Elizab~h Brady
California State University, Northridge
ii
Dedication
I dedicate this project to my daughter Andrea.
She has taught me that each of us is a contributor.
For what she has contributed to my life I am deeply
grateful.
It is my hope that what I have learned
in developing this project will serve to ease her
transition into puberty and help other moderately
retarded individuals in like manner.
iii
Acknowledgements
Sincere thanks and appreciation to:
My son, Kyle Brent Hansen
For developing the first basic drawings in this project.
For the many hours he devoted to this task and for his
extraordinary ability to understand.
My friend, Louie Stinnett
For his unceasing support throughout this project.
was always there--always interested.
He
Richard Rich
For taking time from an incredibly busy schedule to
organize, photograph and direct the development of the
presentations. Knowing he was part of the project made
such a difference. My confidence rested heavily on his.
James Dunn
For stepping in as "last minute artist," after so many
had failed, and doing such an excellent and sensitive job.
Sandy Griffiths
Amy Griffiths
Brian Cummings
Douglas Rich
For their willingness to contribute their "voices" to the
presentations.
The parents
For taking time to view the presentations and booklets.
Their enthusiasm was a "shot in the arm."
Tony Morris
Dorothy Whitaker
For many hours of work preparing the parent booklets.
Their sense of humor was welcome relief in a somewhat
tedious task.
All moderately retarded children
For being "special" in so many ways.
It is my hope that
this project will be a small repayment for what you give
to others.
iv
Table of Contents
Dedication .
.
.
iii
Acknowledgements
iv
Abstract
vi
Chapter
1
Introduction
1
·Statement of the Problem
Scope • . .
Limitations . .
2
1
7
8
Literature Review
11
Cognitive Development
Physical Changes
Internal Characteristics
Growth Spurt . • . • . . . . • • .
Other Internal Changes . .
External Characteristics . .
Psychological Changes .
Response to External (Physical)
Changes
.
.
.
.
.
.
.
.
.
.
• • .
12
15
15
16
19
22
23
.
.
23
.
.
25
Response to Internal (Hormonal)
Ch.anges
•
•
•
•
•
•
•
.
•
•
Response to Higher Expectations
Social Adaptation . . . . . . . . . .
Past Social Adaptation . . . . •
Preparedness for Pubertal Experience
Self-image . . . . . . . . . . . . . .
3
4
26
29
30
.
31
32
Development of Informational Materials .
34
Videotapes
• . . . . . . . . • . • .
Parent Booklets . • . . • . . . . . .
Suggested Use of Video Presentations
34
36
37
Discussion of Video Presentations and
Parent Booklets
Feedback
Recommendations for Future Upgrading
40
40
42
References
43
Appendix - Definition of Terms • .
47
v
ABSTRACT
GROWING AND CHANGING:
PUBERTY AND THE MODERATELY RETARDED CHILD
by
Gwendoline Hansen
Master of Arts in Education,
Educational Psychology, Counseling and Guidance
The moderately retarded child, while experiencing
puberty in many ways similar to his non-retarded peers,
has distinctly different experiences in many other ways.
T.l'-
/_-,..._
011~
D.t:::J
peers.
is physically similar to his/her non-retarded
However, in the areas of cognitive, emotional and
social development the moderately .retarded child displays
significant delays.
Because of these delays, special
care must be taken to prepare the moderately retarded
child for the experience of puberty.
This project addresses the uniqueness of this experience for the moderately retarded child and presents
educational materials developed with these needs in mind.
vi
(.\
Video presentations (familiarizing the child with expected
changes and required tasks) and parent booklets (to answer
parent questions as to how to support/reinforce their
moderately retarded at puberty) have been developed.
vii
'
CHAPTER 1
INTRODUCTION
Statement of the Problem
The focus of this project is the development of
materials to help the moderately retarded child and
his/her parents with the physical, psychological and
social adjustment experienced by the moderately retarded
child as he or she reaches the developmental stage known
as puberty.
Through experience with my own moderately retarded
child, I became aware that a need existed for a presentation, on the topic of puberty, which would be specifically
developed with the moderately retarded child in mind.
My
own child and her peers were introduced to this topic at
a PTA meeting where a slide presentation, originally
developed for normal 5th- and 6th-grade students, was
offered.
It was clear that not only was the material
beyond the comprehension of these students, but, at least
in the case of my own child, actually served to confuse.
I spent a great deal of time simplifying the information
for my child's benefit.
In response to this situation, I
have developed two video presentations (one for boys, one
for girls) which will hopefully introduce the moderately
1
2
retarded child to the experience of puberty in a simple,
concrete and non-anxiety provoking manner.
A commonly acknowledged period of difficulty, even
in the normal child, this period of development may prove
to be distinctly traumatic for the moderately retarded
child, and indeed for his/her parents.
For parents, de
Leon Siantz (1977) sees the onset of puberty as a potential catalyst.
Responses to the dramatic physiological
changes at puberty commonly result in "acting out" behaviors.
The child's behavior provides an impetus for
seeking help.
However, de Leon Siantz points out that it
is during this period that special programs and services
begin to rapidly drop off.
an example of this.
through age 12.
The area in which I reside is
After school programs are offered
At age 12, parents find no programs
available for their moderately retarded child.
In
response to parent needs, a booklet is also offered with
this project.
It has been developed in simple question-
answer format and it is hoped that it will provide some
guidelines for parents attempting to support their child
through puberty.
In 1973 the moderately mentally retarded comprised
6% of the population in the United States (Ehlers, Kushef
& Prothers, 1973).
Conroy and Derr (1971) report that
additional physical and emotional problems are more
frequent in this population, some severe enough to
constitute handicaps in themselves.
3
Four basic reasons for this project
are~
- The moderately retarded individual is often confused and lacks the knowledge to know what or whom
to ask for help.
- Due to low or non-existent reading ability, the
moderately retarded child has limited access to
information from books and other written materials.
- Many moderately retarded individuals lack friends,
or the friends they have are not good sources of
information.
- Moderately retarded individuals often find themselves in a restrictive environment which limits
the opportunity for social activities.
Thus the
chance to observe, develop and practice social
skills are also limited.
(Adapted, Kempton,
w.,
1979}
These social deprivations and cognitive limitations
lead to frustration and, often; behavior problems.
"The
greater the frustration, the more likely the development
of peculiar behavior patterns and the less likely the
mentally retarded child will find social acceptance"
(Dunn, Mackie & Williams, 1961).
.
. . two perceptions reflect the two most current
images of the retarded; the retarded individual as a
sick person and the retarded individual as a developing person.
It seems fair to suggest that the first
image is held by the medically oriented and the
4
general public, while the second is held almost
exclusively by educators, some psychologists, and
possibly some hopeful parents (Kurtz, 1977).
The basic premise of this project is a deep-seated belief
that the moderately retarded child can and will learn.
This belief is coupled with an equally strong belief that
we, as parents and educators, have an inescapable
responsibility to expose him/her to this learning.
The primary purpose of this project is to gain
greater insight into how to reduce the level of frustration experienced by the moderately retarded child as
he/she moves through the stages of puberty, by exploring
physical, social and psychological changes.
This will be
done through educational materials in the form of two
video presentations (one for boys and one for girls).
These videos have been developed as an aid to parents and
educators in familiarizing the moderately retarded child
with the changes which will be taking place during this
period and the tasks required of them.
As further
assistance to the parents a booklet has also been developed which attempts to answer anticipated parent questions
regarding the child's experience at this time.
The Statement of Philosophy and Basic Rights as
adopted by the California Committee on the Sexuality of
the Developmentally Disabled (Nov.
1~75)
reads as follows:
"Every person is entitled to a life that most nearly
approaches a 'normal' and valued life; and all relations
5
and services for persons with special needs should be
formulated with this goal in mind."
In keeping with the Senate Concurrent Resolution No.
30 (1972), which guarantees "normalization" for persons
with mental retardation, we are committed to the following
rights of persons with developmental disabilities.
- Human rights, including freedom of choice, and
guarantees of human dignity, respect and privacy.
-Education to the full extent of their abilities.
The development of sexual dignity and improved
self-understanding.
- The access to community and institutional programs
to support the exercise of these rights.
The key terms in this statement seem to be "rights"
and "dignity."
As the moderately retarded individual
travels his/her developmental path through life, it
behoves us, as parents and educators, to be aware of the
current needs of the individual that we may thereby afford
him/her these rights and dignities in ways appropriate to
current needs.
Gendel (1968) points out that when the
blueprint or program is disrupted either genetically or
by environment, only certain elements are altereed and
growth, in general, continues to follow basic patterns.
In other words development follows overall principles.
The moderately retarded individual then will experience
puberty, at least in some ways, at much the same time and
in somewhat the same way as his normal peers.
6
There are, however, distinct differences which must
be acknowledged and allowed for.
Butt and Gibby (1965)
describe the stage of puberty and oncoming adolescence as
a very critical one for the retarded individual; full of
problems caused primarily by frustration.
Unable to
perceive the demands of his environment accurately
(Muelberger, 1968), the moderately retarded individual is
unable to develop adequate solutions to his problems.
It
is precisely this poverty of problem solving skills which
leads to frustration and often behavior problems in the
moderately retarded individual.
Poor self-concept (McAfee & Cleland, 1965) and high
anxiety (Butt & Gibby, 1976) are prevalent characteristics
of the moderately retarded individual.
As already stated,
the primary goal of this project is to gain greater
insight into how to establish a feeling of security and
adequacy within the moderately retarded child since, at
puberty, many tasks which are universal to all children
must also be met by the moderately retarded child (Gendel,
1968).
By providing information, understandable to the
moderately retarded child and by encouraging the
understanding and support of parents and educators, the
moderately retarded child will be better able to experience puberty while keeping his/her self-concept intact.
7
Scope
This project attempts to address the stages of
puberty as experienced by the moderately retarded child.
Explored are areas in which the moderately retarded child
experiences puberty in a manner similar to his/her peers
of normal intellectual capacity.
However, the differences
experienced by the moderately retarded child during
puberty are of greatest concern and will be addressed in
greater depth.
Three major areas will be explored.
These are 1)
physical, 2) psychological, and 3) social.
These will be
further broken down as follows:
Physical changes:
a) external characteristics
(secondary sexual characteristics/growth spurt) and b)
internal changes (hormonal/glandular, etc.).
Psychological changes:
a) those seen as resulting
from the child's responses to his/her external physical
changes, b) those seen as resulting from internal (hormonal) changes (e.g., mood swings), and c) responses to
higher expectations of others.
Social aspects:
a) past social adaptation, b) degree
of preparedness the child receives for pubertal experience, and c) other people's changes in attitude toward
the child in light of his/her new development and how
this affects the child's self-image.
The topic of cognitive functioning will weave itself
in and out of all the above issues.
Ingalls (1978) summed
8
up this relationship as follows.
"The concept of mental
retardation and the concept of intelligence are so
intimately related that it is virtually impossible to
talk about one without also making a statement about the
other."
In the misalignment of cognitive, physical,
emotion- and social aspects of the moderately retarded
child, the aspect of cognitive ability overshadow all
other aspects.
For example, a 13-year-old girl with a
cognitive functioning level of 5 years and a consequent
adaptive functioning level of 7 years, whose physical
"time-clock" is age appropriate, has a distinctly different emotional experience than her normal counterpart who
is (with some variation) age appropriate in all areas.
Throughout this project an attempt will be made to
address the uniqueness of this experience for the moderately retarded child, and, where appropriate, suggestions
are offered for parents and educators in terms of communication with and support of the child.
Limitations
There are many manifestations of retardation and
many levels of adaptation (even within the same child) in
the areas of cognitive ability, social adaptation and
psychological functioning.
It would, therefore, not be
possible to develop materials which would serve all within
the realm of mental retardation.
The present project
will, therefore, concern itself with the group of
9
individuals falling within the range referred to as
Moderately Mentally Retarded.
Results are not general-
izable to other populations, even within the area of
"retarded individuals."
For instance the Mildly Mentally
Retarded (with somewhat higher capability) and the
Severely Mentally Retarded (at the lower end of the
spectrum) must be considered separately in terms of
appropriateness of approach to these issues.
To recap,
the moderately retarded are those individuals falling in
the Stanford-Binet I.Q. range of 36-51.
Mental age at
adulthood is estimated to be between 5.7 and 8.2 years.
On Piaget's cognitive development scale, this population
does not extend its capability beyond the preoperational
stage.
Egocentrism and concrete thinking are particular
hallmarks of this stage.
Noticeable in researching puberty and the retarded
is the fact that the bulk of the literature addresses
itself to the mildly retarded population.
References to
the moderately retarded tend to be brief and non-specific.
As a result, much of the information contained in this
project required adaptation of content to logically apply
it to the moderately retarded child.
therefore in factual content.
A limitation exists
Much more research needs
to be undertaken in this topic area and with this population before the present project can be considered valid
or appropriate.
10
A further limitation is the age at which this material will be made available to the moderately retarded
child.
It is designed for viewing by children between
the expected pubertal ages of 10 to 15 years.
Children
outside this chronological age may not find the information useful.
Another noticeable factor in researching the literature on the topic of puberty and the retarded child, is
that it has been customary to combine this phase of
development with sexual development (and education) in
its entirety.
The retarded child, entering puberty, is
introduced to th;e issues of puberty and, in addition is
given explanations regarding sexual intercourse, reproduction and the associated issues.
It may be that the
period solely devoted to puberty, as defined in this
project, is closely followed by sexual development,
curiosity and maturity.
However, that they are, for most
people, distinct stages is of prime importance.
For
example, it cannot be assumed that a 10-year-old girl who
begins to menstruate stands in need of counseling regarding sexual intercourse.
This project will approach the
phase of puberty as a distinct experience and leave the
area of counseling and education regarding sexual activity
and reproduction to other authors.
In summary, this project attempts to inform and
reassure the moderately retarded child regarding puberty
and its tasks.
CHAPTER 2
LITERATURE REVIEW
An inter-university computer search was undertaken
revealing little information specific to the topic of the
moderately retarded and puberty.
Regional Center for the
Developmentally Disabled made their specialized library
available to me and, again, the specificity I sought was
limited.
At Regional Center I viewed a slide presentation
(the Stanford Slide Presentation).
This presentation
uses live models who are from time to time nude.
The
presentation covers not only puberty, but the issues of
masturbation, sexual intercourse, etc.
Although it was
extremely graphic and, therefore, certainly qualified
asconcrete, I felt it to be too much for an introductory
presentation.
I felt a
ch~erful,
less threatening,
introduction would best serve the purpose of reducing
anxiety in the moderately retarded child.
Through a
bibliography found in the Regional Center library, I
contacted the Planned Parenthood Association of San Jose,
whence came a great deal of the literature quoted in this
project.
Some additional material was located at the
University of California at Los Angeles libraries.
11
12
It was my finding that specific literature on the
subject of puberty and the moderately retarded individual
is sparse.
Puberty per se receives a brief introductory
position in the area of general sex education material
(which included dating etiquette, sexual intercourse and
pregnancy).
An elementary introduction to puberty alone
is not available.
In addition, I found that the material
offered, in large part, directs itself to the mildly
retarded population (of higher cognitive functioning).
The moderately retarded individual differs significantly
in cognitive functioning (Chin, Drew & Logan, 1979).
As
a result of this paucity of literature specific to the
topic of puberty and the moderately retarded child, the
following review, of necessity, contains portions adapted
from literature dealing with the mildly retarded.
The review will follow the three basic areas already
described.
These are cognitive, physical, psychological
and social concerns and their sub-areas.
Cognitive Development
Chin et al. (1979) describe cognitive development as
an individual's developing capacity to formulate mental
patterns.
Perception ordinarily refers to sensory
experiences received from the environment, while cognition
refers to the meaning and thought patterns which emerge
as a result of combinations of perceptions.
,,
'
13
Probably the most prominent cognitive theorist was
the Swiss scientist Jean Piaget.
Piaget (1952) supposes
four basic stages of cognitive development which will
occur during specific periods of a child's life.
stages are:
These
1) Sensorimotor Period (0-2 years), 2) Pre-
operational Period (2-7 years), 3) Period of Concrete
OperatiQns (7-11 years), and 4) Period of Formal Operations (11+ years).
Piaget sees each of these stages as
having substages occurring in specific sequence.
At each
stage Piaget describes the world of the child as qualitatively different in two areas.
The first is the child's
"Schema." This refers to the manner in which the child
comprehends different aspects of his or her world.
second is "Adaptation."
The
This is the child's ability to
fit in with his or her surroundings.
It was Piaget's
contention that although rates of progression may be
different, each child will progress through these stages
in the same sequence.
How does this relate to the moderately retarded
child?
Inhelder (1944) applied Piaget's developmental
model to the mentally retarded.
She described the
moderately retarded as " . . . incapable of progressing
beyond the preoperational intuitive subperiod."
From
this perspective such an individual might evidence some
functions similar to the normal child of about 4 to 7
years old.
(It is important to note that Inhelder
describes the ceiling capability to be expected.)
14
Individuals may cease progression at lesser stages within
the preoperatonal stage.
Inhelder envisioned the moder-
ately retarded as unable to conceptualize any other point
of view than his/her own.
This egocentrism is one aspect
of the preoperational level of cognitive functioning.
Dvoretsky (1981) uses the following example of the preoperational child's inability to to conceptualize any
other point of view than his own.
A child is seated in a chair facing a table upon
which are placed three mountains.
Three other
chairs are placed around the table, and a doll is
seated in one of these chairs.
The child is then
instructed to select from a set of drawings what ·
the doll sees.
Dvoretsky explains that while the child 7 or 8 years old
is likely to select the correct drawing, the preoperational child will typically choose the drawing that
depicts only what he himself saw.
Another characteristic of the child in Piaget's preoperational stage is that his/her conceptualization of
symbols used to represent reality remains concrete (Chin,
et al., 1979).
It therefore becomes necessary to avoid
abstractions in presenting information to the child in
this stage.
Chin, et al. describe the moderately retarded
individual as depending substantially on perceptual
experiences to provide mental representations of events.
The focus of the individual in this stage is primarily on
v .
15
the most immediate, interesting and compelling attribute
of an event.
Chin, et al. conclude that while the child
may have abilities to think and function in a manner much
like older children (i.e., in the areas of language,
social adaptation, and some problem solving), there is
indeed a significant limitation in such skills.
Physical Changes
Internal Characteristics.
Katchadourian (1977)
portrays the physical changes at puberty as being mediated
at four levels of control.
in the hypothalamus.
The highest level takes place
The next is in the pituitary gland
which is under the control of hormones secreted by the
hypothalamus.
The hormones of the pituitary in turn
regulate the activities of the testes and the ovaries.
Finally, the "sex hormones" produced mainly by the testes
and ovaries bring about the numerous physical changes at
puberty.
Marshall and Tanner (1974) describe puberty as being
"
. . so pervasive that there are hardly any tissues in
the body that are not affected by it."
The presence of
such internal activity cannot fail to effect the life of
the individual in whom it is occurring.
These internal
phenomena are experienced by the moderately retarded
individual in the same manner as his or her normal
counterpart.
It is important for parents and educators
16
to be aware of these changes and their expected effects
on the child.
Explanations to the moderately retarded child
regarding what is occurring to him or her internally at
puberty need to be considered carefully.
When we move
from the external (that which is visible to the child) to
the internal (which the child cannot see) we move from
the concrete, which is understandable to the moderately
retarded child, to the abstract, which may serve to
confuse the child who has not developed this degree of
cognitive competence (Inhelder, 1944).
Any reference,
therefore, to the internal functioning must be presented
to the moderately retarded child in a concrete manner.
It may otherwise be of little value and indeed, by creating confusion within the child, counterproductive.
Growth Spurt.
Growth in stature is one of the more
noticeable changes at puberty.
familiar image.
The lanky adolescent is a
It is not, however, the overall amount
of growth which is dramatic, but the "rate of growth."
At age 10, girls have already attained 84% and boys 78%
of their adult height (Bayley, 1956).
Tanner (1970)
reports that in the year in which a boy grows fastest, he
may add between 3 and 4 inches to his height and a girl
slightly less.
Tanner emphasizes that this spurt repre-
sents an actual doubling of velocity of growth.
Katchadourian (1977) places growth spurt in adolescent
17
boys as simultaneous with enlargement of the penis, and
approximately one year following onset of testicular
growth.
In girls, he correlates growth spurt with breast
enlargement.
While offering these guidelines, he also
emphasizes that they are not immutable and can indeed
occur in reverse order, especially if occurring close
together.
It is important to note that while all parts of the
body grow simultaneously, they do so at different rates.
A brief summary of growth rates follows:
1)
General growth curve - steep in childhood levels
off between ages 5 and 10.
Rises sharply at
puberty, then levels off.
2)
Genital growth - follows a similar pattern.
However, is much less marked initially with a
more dramatic upsurge at puberty.
3)
Neural development - almost full growth attained
by puberty.
4)
Lymphoid growth - by age 7 already attained
adult size but continue to grow until about 12,
THEN actually regress.
The moderately retarded child is affected by his or
her sudden growth spurt in several ways.
Along with all
adolescents there may be a sense of awkwardness or
clumsiness.
Clothes become uncomfortable and a general
cumbersome feeling may exist.
18
The normal adolescent experiences a lot of peer
pressure, suffers from comparisons, and embarrassment is
often felt (Rosenberg, 1983).
Much of this occurs as a
result of acutely developing awareness of self.
Rosenberg
cites clothing, height, weight and breast size as items
of preoccupation in the average pubescent child.
Blodgett
(1971) describes the pubescent child as " • . . introspective and concerned deeply about their appearance."
But what of the moderately retarded child?
Cleland
(1978} indicates that while the moderately retarded child
will lag behind and be less inclined to introspect, he or
she will display moodiness, in part due to an increased
awareness of being "different" and rejected.
Considering
the cognitive limitations of the moderately retarded
child it seems likely that while he or she may experience
a general feeling of being "different," it is unlikely
that he or she will be aware of subtle changes in
appearance.
A study by Sailor and Ponder (1968} with the
mildly retarded (average I.Q.
= 58.79}
described these
individuals as having weaker body boundaries than normal
adolescents.
Fisher and Cleveland (1958} established
that "The relationship of how one perceives one's body
boundary and the clarity with which body is separated
from the environs has been shown to be related to behavior." Studies are unavailable regarding body boundary
awareness in the moderately mentally retarded.
It can
be assumed, however, that this awareness will show even
19
greater deficits in this population.
Of significance
is that children of normal intelligence are able, if
requested, to articulate their feelings.
(1983) cites many such expressions.
Rosenberg
The moderately
retarded child, on the other hand, experiences limitations in both expressive and receptive vocabulary.
In
short, he/she has more difficulty understanding what is
said to him/her and has more difficulty putting thoughts
into words (Ingalls, 1978).
However, Ingalls goes on to
point out that, since the moderately retarded individual
is unable to rely on written language, oral language
skills are particularly important to him.
It becomes
necessary therefore to actively approach the moderately
retarded child verbally in an effort to relieve some of
the stress he or she may be experiencing due to growth
spurt.
anxiety.
Brief, concrete verbal reassurance may alleviate
For example, "My, Joe, you are growing talll
Do your legs and arms seem too big for you?
All boys
and girls of your age feel that way too."
Other Internal Changes.
At puberty, the heart
nearly doubles its weight (Maresh, 1948).
Systolic blood
pressure increases at an accelerated rate and soon attains
adult value (Katchadourian, 1977).
Blood corpusccles,
hemoglobin and volume all undergo changes.
The size of
the lungs and respiratory capacity increase during puberty,
especially in boys (Ferns & Smith, 1953; Shock & Soley,
0 '
20
1939).
The result of these increases in heart and lung
capacity is the increased capacity of the individual for
physical exertion and quicker recovery from its effects
(Katchadourian, 1977).
These internal changes occur in normal and retarded
individuals alike.
As already suggested, information
regarding these changes (not visible to the moderately
retarded child) is of little benefit to the child.
Again,
however, awareness of these changes is of importance to
parents and educators.
As a result of these changes,
routines of exercise, healthy diet and sleep become very
important to the well being of the child.
Since awareness
of these things will come to the moderately retarded
child only through educators and parents, this responsibility must be accepted by such.
de Leon Siantz (1977)
points out that adolescents in general are at risk for
obesity due to the rapid addition of subcutaneous fat at
puberty.
This is more pronounced in females.
Physical
exercise and nutrition are both important to the developing child and particularly at puberty.
Many moderately retarded individuals receive less
exercise than normal children due to their inability to
relate to or interact with normal peers (de Leon Siantz,
1977).
De Leon Siantz, finds that the ability to func-
tion autonomously and to form relationships corresponds
closely with level of cognitive ability.
As a result,
after school hours, the moderately retarded child may
21
stay in his own "yard" or in the house with his mother.
Aware of all these changes taking place in the child,
parents must take the initiative to increase the child's
exercise levels (Katchadourian, 1977).
Inquiries may be
made as to "special" sporting events in the area.
Special
Olympics has become a national organization meeting the
needs of handicapped individuals throughout the United
States.
The moderately retarded child need the challenge
and opportunity to develop physically (and socially)
(Fleming, 1973).
If special organizations are non-
existent, members of the family may take turns in including the moderately retarded member in activities of a
physical nature.
Bike riding is a good outlet.
Even
walking is a wonderful form of exercise and within the
realm of most people.
This may also provide an oppor-
tunity for parent and child (or sibling and child) to
talk about things seen on the walk--what they are, what
they mean.
It is also important that the moderately retarded
child learn good nutrition (de Leon Siantz, 1977).
Through repetition the moderately retarded child may
learn the four basic food groups.
Reinforcement of this
learning (Schwartz, 1973) is important.
For example, a
parent, or educator, may point to an item on the child's
meal tray and ask in which food group it belongs.
"Johnny, you have an egg.
Which food group is it found
in?" or "Susan, can you show me something from the fruit
,,
'
22
and vegetable food group?"
Through such repetition
(Schwartz, 1973) and through considered meal planning,
the moderately retarded child will not only be healthier
through puberty, but will develop good food habits
throughout his/her life.
Another consideration related to the dramatic internal changes taking place in the pubescent child is the
increased need for sleep.
Katchadourian (1977) reports
that sleep difficulties are common in adolescents, and
are far more frequent in girls than in boys.
This, and
the extensive internal activities of the body, points to
the need for regular and adequate sleep.
Parental sup-
port in developing these sleep habits would be imperative.
External Characteristics
External characteristics of puberty are those known
as the secondary sexual characteristics.
In the female,
these include breast enlargement, widening of the hips
and the onset of menarche.
In males, these characteris-
tics include deepening of the voice, the appearance of
facial hair and the first ejaculation of sperm (nocturnal
emission).
In both sexes underarm and pubic hair devel-
ops (Katchadourian, 1977).
For the moderately retarded
girl, information and guidance regarding menstruation is
of prime importance (Kempton, 1979).
One can only ima-
gine the anxiety produced in such a girl who begins to
menstruate without such instruction.
23
External changes may be more noticeable to others
than to the moderately retarded child.
Since the moder-
ately retarded child's attitude is most often a reflection of important adults in his/her environment (Fisher
& Krajicek, 1974), responses of these adults is extremely
important.
If the child displays anxiety regarding these
external changes it would be well for these adults to
reassure the child of the normalcy of the changes.
How-
ever, if the child appears unconcerned or unaware of
these changes, there is no reason to draw their attention
to these very natural occurrences except as part of teaching appropriate social behavior connected thereto (de Leon
Siantz, 1977).
Psychological Changes
Response to External Physical Changes.
Erickson
(1963) describes the task for this period of development
as "Identity vs. Role Confusion," or, as Cleland (1978)
sees it, the important questions are "Who am I?
am I?".
mal.
What
This state of questioning and confusion is nor-
It is felt by many psychologists that this period
of trauma is a necessary part of the process of maturing
(Kiel, 1964).
This is when it becomes all-important to
be "a good athlete, popular, goodlooking and other features the peer group deems significant" (Cleland, 1978).
Cleland emphasizes that the retarded child also has a
strong need to belong and to be accepted.
He or she may
24
see physical similarities between self and other teenagers, yet be aware that he or she is different.
As
already discussed, the normal child at this stage will be
painfully aware of his/her emerging f"igure and his/her
clothing (Rosenberg, 1983).
The normal child may also
be able to relate to peers who are experiencing similar
discomfort.
He or she may be exposed to information and
education, through family and school, regarding the
"normalcy" of his/her experience at puberty.
'I·hus, while
uncomfortable with his/her experience, cognitive enlightenment allows the experience to be put into some
perspective.
The moderately retarded child does not adjust_easily
to the physical and psychological changes accompanying
puberty (de Leon Siantz, 1977).
He or she may feel
clumsy, awkward and unable to compete with peers in gross
motor activities (like running and jumping) or fine motor
activities (like cutting and wrapping)
1973).
(Morganstern,
Limitations in command, acquisition and use of
language (Allen & Cortazzo, 1970) further isolate the
moderately retarded child from his peers.
The moderately
retarded child is unable to understand such abstract
ideas as "good figure" or "inappropriate clothing"
(Ingalls, 1978).
He or she is dependent on others, more
often parents, for guidance in these matters (Fisher &
Krajicek, 1974).
Ingalls (1978) found that retarded
subjects have an external locus of control.
This means
25
that these individuals see themselves as having little
control over their lives and feel that events are determined by chance or by the actions of other people.
Unless
encouraged by others then, the moderately retarded child
will take no action to effect the way he looks or what he
wears.
Other than a general sense of feeling awkward and
being aware, through feeback from others, that he/she
looks different, it can be concluded that the moderately
retarded child does not experience the specificity of distress common to normal teenagers as a result of pubertal
changes.
Response to Internal (Hormonal) Changes.
The major
hormonal changes which occur at the onset of puberty may
increase anxiety in the pubescent child (de Leon Siantz,
1977).
Piaget (1944) considers the achievement of "formal
operations" in the child's cognitive development to be
the hallmark of the stage of puberty.
Piaget's theory
includes the development of logical reasoning, critical
thinking and the ability to abstract as facets of this
stage of development.
With these higher abilities the
individual is able to consider many alternatives simultaneously (O'Neil, McLaughlin & Knapp, 1977).
This
includes the ability to comprehend symbols, metaphors,
double-entendres and connotative awareness as new tools
of the individual at this stage.
A major aspect of this
new cognitive expansion is the individual's ability to
see him/her self as other do.
This may lead to what
(1
26
O'Neil et al. describe as "excrutiating self-consciousness
and self-deprecating thoughts."
While the normal child
is experiencing these drastic physical and mental changes,
the moderately retarded child is experiencing only the
physical (hormonal) aspects of the stage.
Unlike his
normal counterpart, he is able to consider "only one
aspect or property of a situation at any given time"
(O'Neil et al., 1977).
Inhelder (1944) viewed the moderately retarded
individual as incapable of progressing beyond Piaget's
pre-operational intuitive subperiod.
This places the
individual in much the same functioning level as the
normal child of 4 to 7 years.
This disparity of develop-
ment produces a distinctly unique experience for the
moderately retarded child at puberty.
If we imagine a
child of 4 to 7 years of age experiencing the dramatic
hormonal upheaval of puberty, we may glimpse the confusion of the moderately retarded individual as he or she
attempts to integrate and respond to such an experience.
It is therefore imperative that the retarded child be
prepared for these gross physiological changes brought
about by puberty.
Without this preparation, puberty may
be experienced as a traumatic experience (Chinn, Drew &
Logan, 1979).
Response to Higher Expectations.
Chinn et al. (1979)
point out that the child of pre-school age (chronologically) who exhibits linguistic and cognitive behavior
•
27
typical of this developmental stage will be tolerated and
even deemed amusing by society.
The moderately retarded
child, who is developing physically into a recognizable
adult, will be tolerated to a much lesser degree if he or
she display similar behavior.
The moderately retarded
individual's inability to see himself as others do (O'Neil
et al., 1977) may create further confusion.
Chinn et al.
{1979) indicate that the moderately retarded are "generally unable to conceptualize any other point of view than
their own and thereby remain basically egocentric."
It
is precisely this ability to "see oneself as others do"
that leads to self-consciousness in the normal pubescent
child, and thereby affects behavior {both in manner and
dress).
Change is brought about by what Rosenberg (1983)
calls "comparison and competition."
Parental approval
becomes less important and peer acceptance emerges as the
gauge of one's worth.
Fleming (1973) maintains that the moderately retarded
child is capable of developing a self-concept.
Fleming
sees this as a result of parental attitudes toward the
child.
Fisher and Krajicek (1974) suggest that the mod-
erately retarded child's attitude of self-acceptance will
tend to reflect the attitude of important adults in his
environment.
In summary, unlike his normal counterparts,
the moderately retarded child looks to adults for confirmation of his worth.
28
Based on their own conflicts concerning independence
(for themselves and their child), Morganstern (1973)
found that parents may alternately encourage growth and
foster dependence in their retarded child, thereby creating anxiety and confusion for the child.
As the moder-
ately retarded child increases in size, the adults in his
environment may increase their expectations of him.
These
expectations may reflect the adjustment of the parent to
the child's increase in size and change of appearance
(Morganstern, 1973).
Parents who may have adjusted to
the idea of having a retarded child may now begin to face
the realization of having a retarded adult in the home.
A sense of urgency may result in an increase in performance expectancy.
This can be a very traumatic period
for both parents and child.
Allen and Cortazzo (1970)
emphasize programs to assist parents and child through
these adjustments.
Conseling and parent education pro-
grams may help parents feel they are not alone with these
problems.
Chinn, Winn and Walters (1978) point out that
while the professional worker is involved with the retarded child by choice, and the teacher for a limited
time period, the parents have the child every day, and
every night.
For parents there are no weekends or
Christmas, spring and summer vacations to escape the
reality of having a retarded child.
What the future
holds may be unclear to the parents of the moderately
retarded child.
The unknown generates anxiety which in
29
turn may generate fear (Chinn et al., 1979).
Parents who
felt they had already worked through these fears may experience a re-emergence of these feelings as their child
enters puberty.
The California State Department of Edu-
cation (1962) noted that parents react in different ways
due to personality differences.
This report also noted
that, as with normal children, there exists a close relationship between the behavior of the moderately retarded
child and a stable home environment.
In summary, the moderately retarded child at this
stage of development is limited in awareness of other's
reactions to his/her physical changes and he/she may be
acutely sensitive to parental changes in attitude and
expectations.
Social Adaptation
Adaptive behavior is defined as the effectiveness
or degree to wr1ich the individual meets the standards of
personal independence and social responsibility expected
of his age and culture group (Grossman, 1973).
Demon-
strations of variability in an individual indicate that
separate measures of intelligence and adaptive behavior
are warranted (Chinn et at., 1975).
Tests currently
available, such as the Vineland Social Maturity Behavior
Scale and the Balthazer Scales of Adaptive Behavior,
measure aspects of functional behavior contributing to
total adaptation.
These tasks provide information in
30
such areas a self-care activities, sensorimotor skills,
language development, economic activity, number and time
use, domestic activity, responsibility and socialization.
The President's Committee on Mental Retardation
(1975) describes the adaptive characteristics of the moderately retarded individual (age 6-20 years) as follows:
"Can profit from training in social and occupational
skills; unlikely to progress beyond second grade level
in academic subjects; may learn to travel alone in
familiar places."
Past Social Adaptation.
The social adaptation level
of the moderately retarded child will depend a great deal
on the degree of opportunity and training which has been
made available to him or her.
School and home environ-
ments share this responsibility.
al.
In the school Chinn et
(1979) identify two general approaches.
The first
emphasizes personal, social and self-help skills to prepare the individual to function adequately in the home.
The second places greater emphasis on vocational preparation.
Where the emphasis has been placed in the school
environment will determine to some extent what the various
levels of adaptation will be at puberty.
Opportunities for the development of adaptive skills
also exist in the home environment.
The parents of the
moderately retarded child may have a tendency to do things
for the child rather than invest the time in teaching the
child self-help skills (Blacklidge, 1971).
Schwartz
31
{1975} found that the retarded child requires more frequent reinforcement and cites B. F. Skinner's linear
program {small bits of information presented in clear,
sequential steps} as necessary for learning in the moderately retarded child.
Fleming {1973} states that
"Moderately retarded individuals usually achieve their
maximum potential if they learn the basics of self-care,
a degree of social behavior, and some semblance of independence under structural supervision."
It is imperative then that parents and educators
provide amply opportunity and training in self-help and
social skills to the moderately retarded child throughout
his life.
Preparedness for Pubertal Experience.
If the moder-
ately retarded child has developed his potential in the
areas of self-help and social behavior it will be a far
less overwhelming challenge to prepare him/her for the
tasks of puberty (Fleming, 1973}.
For instance, the
child who is able to wash independently will more readily
understand the instruction "Wash your face three times a
day to wash away oils" (from the video presentation}.
The girl who has been taught the mechanisms of "privacy"
and "modesty" will more easily integrate the instructions
regarding privacy in matters of menstrual hygiene
{Blacklidge, 1971}.
Parental attention to social train-
ing, if it has been neglected to date, of necessity
cannot be ignored in the pubertal child.
32
Self-image.
Ingalls (1978) recognized that most
retarded individuals have experienced a good deal more
failure than have non-retarded individuals.
He indicates
that this leads to the retarded individual directing his
energies toward avoiding failure rather than achieving
success.
Zigler (1973) found retarded children "to be
more interested in pleasing adults and maintaining social
contact with adults than are normal children."
Rejection
by adults in social contexts may leave the child feeling
helpless and inadequate.
It seems to be more difficult
to accept a 13 year old retarded girl, of 5 feet 6 inches,
in a public place than to accept the same girl at age 7,
considerably smaller in height in the same social context
(Cleland, 1978) .
It is important to help the child to understand that
changes are taking place in her/her appearance, that
based on these changes different behavior will be expected
(Blacklidge, 1971).
It is, however, necessary to be con-
crete (Chinn et al., 1979j.
To say "You are big now.
don't want you to hug me in the supermarket.
I
I want you
to shake my hand" is a simple, concise way of teaching
appropriate behavior without lengthy explanations.
While
the child may not understand the extent of the changes in
his/her appearance, he/she can understand that new behavior is now acceptable to the important adult(s) in
his/her life (Zigler, 1973).
Reinforcement of compliance
is of ultimate importance (Schwartz, 1973).
(\
33
The main theme of all the above points is that the
moderately retarded child feel good about him/her self.
If this exists, opportunities to teach (for parents and
educators) and learn (for the
will be continual.
mod~rately
retarded child)
'
0
CHAPTER 3
DEVELOPMENT OF
INFOR~ATIONAL
MATBRIALS
Videotape
A review of the literature clearly demonstrates the
need for special consideration of the moderately retarded
child experiencing puberty.
The video presentations have
been developed to suit the cognitive level of the moderately retarded child.
An important element of the cogni-
tive world of the moderately retarded child is his/her
limitation in terms of grasping the abstract (Chinn et
al., 1979).
It is therefore expected that the child in
the moderately retarded range will handle cognitive tasks
in a very concrete manner.
It is with this in mind that
the video presentations have been developed on a very
concrete (non-abstract) level.
In developing the video
presentation, a certain degree of independent self-care
and social adaptation is assumed.
It would be too over-
whelming a task to incorporate areas of learning which
may have been developed as a helpful tool in preparing
the moderately retarded child for the experiences of
puberty.
Care has been taken to introduce expected
changes and associated tasks (for the child) in a simple
and concrete manner.
34
•
35
The video presentations were developed with the following requirements in mind:
a) the need for simplicity
and concreteness, b) the need for sensoral appeal to hold
the attention of the moderately retarded child, and c)
the need for brevity based on the limited attention span
of the moderately retarded child.
In preparing the presentations, the first step undertaken was the development of scripts.
The scripts were
modified several times in an attempt to present the information in a more "concrete" manner.
Even when all this
was accomplished, concern was felt regarding its "lecture"
like quality.
This was modified by introducing a "main
character" into each presentatio;n.
This "character" was
interjected with appropriate facial expressions and/or
comments where and how it was felt the child viewing the
presentation might respond.
Once the scripts were final-
ized they were arranged in story-board fashion.
The
artist was given sample drawings, but was allowed to
develop the characters in his own style.
Caricature-
style drawings were chosen by the artist.
The completed
drawings were then developed into slides.
The narrative
was recorded on a 4-track, 1/4-inch, open-reel tape recorder.
The narration was placed on Track #1, music was
added on Track #2 and sync-pulses were added on Track #4.
Track #3 was not utilized.
An AVL computer was used to
dissolve and coordinate slide projections.
The AVL was
also used to lay down sync-pulses and track so that tracJc:.
36
and visual slides would be synchronized.
The complete
presentation was then transferred to videotape using a
video camera.
Copies of this were then made.
In trans-
ference to videotape, a 20-second delay was made between
the girls' and boys' presentations.
This delay allows
presentations to be shown singly.
The caricature cartoon approach with simple, colorful drawings and with catchy music was chosen in an effort
to appeal to the senses of the moderately retarded child.
It follows that if the child's attention is captured,
teaching of content is more apt to be successful.
Both presentations deal with the general areas of
growth spurt, underarm and pubic hair, moodiness,
~ygiene,
good nutrition, physical exercise and the importance of
sleep.
In addition, the presentation covering male
puberty includes discussion of facial hair, voice change
and noctural emissions.
The presentation covering female
puberty includes breast enlargement and menstruation.
Parent Booklet
Questions which parents may have regarding puberty
and their moderately retarded child were anticipated and
written in question/answer form.
It was decided that the
format of the booklet would be one in which one question
was addressed per page.
This would be placed on the
right side of the page with a corresponding drawing (from
the video presentations) on the left side of the page.
37
A "dummy" was prepared of what would represent the final
format.
Sheets of paper (8-1/2" x 11") were folded in
half so that each page was 5-1/2 inches by 8-1/2 inches.
Drawings were reduced to match proportionately the 5-1/2
inch by 8-1/2 inch sheets.
Photocopies were made on both
sides of 8-1/2 inch by 11 inch sheets so that when collated and folded to 5-1/2 inch x 8-1/2 inch size, everything would correspond.
The spine was then stapled at
fold.
The booklet corresponds with the video presentations
in that it addresses the same areas pertinent to the moderately retarded child at puberty.
Information is offered
to the parents of these children regarding ways in which
they might best support and reinforce the learning presented in the videos.
In the event that the video is not
viewed by parents, the booklet, by itself, would prove
useful in helping both parent and child through the necessary adjustments as the child experiences puberty.
Suggested Use of Video Presentations
It is not expected that the moderately retarded
child will grasp the information introduced in the video
presentations in one showing or without additional reinforcement.
It is intended simply as an introduction to
these issues.
Wherever these presentations are shown
(school, PTA meetings, home) it is strongly suggested
that discussion regarding what to expect take place prior
38
to viewing the presentation.
This may be between teacher
and student, parent and child, or school representative
and student.
The child should at least have a basic
understanding that he/she is going to view a video which
will talk about how he/she and his/her peers change when
reaching this age period.
It is also strongly recom-
mended that parents take the time to view the presentation prior to the child viewing it.
After the child has
viewed the presentation the main points of the presentation should be reviewed by asking simple questions such
as "Can anyone tell me one of the ways your body will
change?"
Positive reinforcement for correct
should follow.
~nswers
Where areas are foggy, repetition and
clarification may be given.
A second viewing of the
video should take place at another date.
This would best
serve as a review if it is no more than two or three
weeks later.
Prior to the second viewing, a brief verbal
review of main points with the student/child will render
this second viewing most beneficial.
If utilized in this
manner it is hoped that the video presentations will be
of sufficient clarity (concreteness) and appeal (perceptual attractiveness) to successfully bring to the attention of the moderately retarded child what is occurring
during puberty and what is expected of him or her, in a
non-anxiety provoking manner.
Teacher and parent under-
standing and reinforcement of the information contained
in these video presentations cannot be overemphasized.
39
The parent booklet which accompanies the presentation will serve as a reminder of what to expect and how
to help as the moderately retarded child experiences the
changes of puberty.
CHAPTER 4
DISCUSSION OF VIDEO PRESENTATION
AND PARENT BOOKLET
Feedback
The video presentations were shown to four sets of
parents whose child is moderately retarded and in the
appropriate age group for the video.
as follows:
Child profiles are
1) male, age 14: 2) male, age 12: 3) female,
age 11; and 4) male, age 16.
The parents of the last boy
were chosen because it was felt they had already experienced puberty with their son and might be in a position
in retrospect to be valuable critics.
Children of other
parents were, at present, in the beginning stages of
puberty.
After viewing the slide presentations and
reading the parent booklet, parents were asked the following questions:
1)
Do you feel that. the presentations
are appropriate for the moderately retarded child?
2) Do
you feel that all areas which the child needs to be aware
of are covered?
3) Do you have further suggestions for
improvement of the presentations?
the parent booklet helpful to you?
4) Would you consider
Both presentations and
booklet were received with enthusiasm by all the parents
who viewed them.
Responses to question #1 regarding
40
41
appropriateness were unanimously "Yes."
However, there
was also strong agreement that more than one viewing
would be necessary.
Question #2 regarding areas.covered
was also given a unanimous "Yes."
Question #3 brought
the same suggestion from two mothers.
This was in regard
to the statement in the video "You must change your pad
four times a day."
Both felt that many girls need to
change·more often than this and an effort should be made
to teach the girl how to recognize the need for such
change {e.g., when she feels "wet").
again, a unanimous "Yes."
Question #4 was,
One parent, whose son had, two
weeks prior, his first nocturnal emission, verified that
he indeed had felt that he had wet the bed and was .very
distressed.
She expressed how much she wished she had
seen the presentation and read the booklet prior to this
occurrence, feeling it would have reduced both her and
her son's anxiety.
In addition, the video presentation and parent booklets were assessed by the school nurse in a special education district.
#4 were positive.
Her responses to questions #1, #2 and
In response to question #3, regarding
suggestions for improvement, the following two suggestions
were given:
1.
That the girls' presentation be shown in two
parts.
It was felt that the end of the discus-
sion of menstruation would lend itself well to
such a split.
42
2.
That flashcards be developed from the presentations and used as a learning tool on a continued
basis between viewings of the videos.
Recommendations for Future Upgrading
Since presentation of the videos and the parent
booklets was so limited (due to a shortage of time), it
is difficult to assess fully the usefulness of the
materials.
Without such critiquing it is equally dif-
ficult to make recommendations.
I would recommend more
widespread assessment of the usefulness of the materials
both in terms of viewing by parents and educators of the
moderately retarded child, and over time.
This would
necessitate interviews with parents and educators of the
moderately retarded both prior to and following pubertal
experience.
With the exception of the suggestion regard-
ing re-evaluation of the item dealing with change of
sanitary pads, the presentations and booklets seem to
this author to be thorough in content and appropriate in
style.
However, as stated above, further critiquing by
parents and educators is needed for accurate assessment
of these claims.
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~a~n~d~J~.~D~o~b~b~1~.n~g~7(~E~d~s~.~)=.~~L~o~n~d~o=n~:~~W~I~lliam Heinemann
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46
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APPENDIX
DEFINITION OF TERMS
Puberty
The stage of maturation in which the individual
becomes physiologically capable of sexual reproduction.
During puberty the reproductive system matures and
secondary sexual characteristics emerge.
Height, weight
and body proportions undergo marked acceleration.
This
is the "growth spurt" early in the cycle of puberty.
Secondary Sexual Characteristics
Physical characteristics that appear in humans around
the age of puberty.
In girls these include the develop-
ment of breasts and widening of the hips.
In boys the
deepening of the voice and the appearance of facial hair.
In both sexes underarm and pubic hair develops.
The
appearance of secondary sexual characteristics signals
that the body is preparing for the capacity to reproduce.
This period is reached in males at the time when the
first ejaculation of sperm becomes possible, and in
females once menarche (the beginning of menstruation) has
occurred.
47
48
Mentally Retarded
Significantly subaverage general intellectual functioning resulting in, or associated with, deficits or
impairments in adaptive behavior.
Moderate Mental Retardation
In terms of I.Q. (using the AAMD scale) Ingalls (1970)
places the moderately retarded individual three or four
standard deviations below normal.
On the Stanford-Binet
(s.d. - 16) this shows a range of 36-51.
scale (s.d. - 15) the range is 40-54.
On the Wechsler
The estimated
mental age at adulthood is between 5.7 and 8.2 years
(Ingalls, 1978).
Ingalls further notes that research
shows the Stanford-Binet and Wechsler tests to be "about
as useful with the retarded as they are with normal
children."
The DSM-III defines the moderately retarded as
follows:
Those with this level of mental retardation during
preschool period can talk or learn to communicate,
but they have only poor awareness of social conventions.
They may profit from vocational training and
can take care of themselves with moderate supervision.
During the school-age period, they can profit from
training in social and occupational skills, but are
unlikely to progress beyond the second-grade level in
academic subjects.
They may learn to travel alone in
fl
'
49
familiar places.
During their adult years they may
be able to contribute to their own support by performing unskilled or semi-skilled work under close
supervision in sheltered workshops.
They need
supervision and guidance when under mild social or
economic stress.