Did you know…?

Anyone can have a baby with Down syndrome. It is caused by the presence of
an extra chromosome in a baby’s cells.

Around one in every 1,000 babies born in the UK will have Down syndrome.

There are approximately 40,000 individuals in the UK with the condition.

Down syndrome is not an illness or a disease, and you can’t catch it.
Individuals do not ‘suffer’ with the condition, and aren’t afflicted.

Labels matter! Individuals with Down syndrome are people first. Try to avoid
saying ‘Down’s child’ or describing the condition as ‘Down’s’. A child with
Down syndrome is preferable if you have to mention it.

People with Down syndrome have a learning disability, but this does not mean
that they can’t learn with the right support.

People with down syndrome are just like you and me. They have friends, they
go to school to learn, they join local clubs, they have interests, hobbies and
talents, they have dreams and aspirations, and they want make a positive
contribution to their communities.
Portsmouth Down Syndrome Association is registered charity number 1147355 www.portsmouthdsa.org
What is Down Syndrome?
Down (or Down’s) syndrome is the most common form of learning disability. It
affects about 1 in every 800 people and is equally spread across the country and
throughout the world, regardless of gender, race, or social class. Each day, 2 or
3 babies are born with Down syndrome in the UK. It has probably always existed,
and there is no cure. Down syndrome is caused by the presence of an extra
chromosome in each cell and it was discovered in 1866 by Dr Langdon Down,
hence the term “Down’s syndrome”.
Our bodies are made up of millions of cells and each cell
normally contains 46 chromosomes – we get 23 from our
mother, 23 from our father. Chromosomes are what give us
brown hair or blue eyes or even what determine whether we
are male or female. Someone with Down syndrome has an
extra chromosome in each cell, and this happens at
conception.
All people with Down syndrome will
degree of learning disability, but the
abilities is vast, and the more someone
they have Down syndrome has no
level of disability. Children with Down
come in all shapes and sizes, with
and eye colours (just like the rest of
can’t always tell if someone has Down
the way they look.
have
some
range
of
“looks”
like
bearing on their
syndrome
different hair
us)….and you
syndrome by
The important thing to bear in mind is that we all have 46 chromosomes in
common with someone with Down syndrome, so we’re not that different! And
children and teenagers with DS share the same likes and dislikes, feelings and
emotions as anyone else.
So put the child first, and the condition next. The correct term to use is “A child
with Down syndrome”. There is no such thing as“A Down syndrome child”, or
even “A Down’s”.
A Specific Learning Profile
Students with Down syndrome are not just generally delayed in their
development and therefore merely in need of a diluted curriculum. They have a
specific learning profile with characteristic strengths and weaknesses, and so
they learn differently. A knowledge of the learning profile is, therefore,
essential, so that teachers can work towards the strengths of the student and
work around their weaknesses.
Factors that facilitate learning:
 Strong visual learning skills.
 Ability to use sign and gesture.
 Ability to learn and use the written
word.
 Ability and desire to learn from peers.
 Learning best from pictorial, concrete
and practical materials.
 Keen communicators despite language
problems.
 Structure and routine.
Factors that inhibit learning:
 Delayed motor skills – fine and gross.
 Auditory and visual impairment.
 Speech and language delay – the biggest cause of frustration for
teenagers and adults with DS.
 Short term auditory memory – listening, processing,
storing/remembering and sequencing.
 Shorter concentration span.
 Consolidation and retention problems.
 Generalisation, thinking and reasoning.
 Avoidance strategies.
Not all students with DS have all of these factors, but they are very common.
Also there are many students who do not have DS who exhibit many of these
traits.
Aims of Inclusion
 A valued role in the community.
 A fulfilled life.
 Independent living with the right support.
Essentially, schools need to take on board the broader view of secondary
schooling, ie What are the long term goals for these students?
Nowadays, people with Down syndrome are exceeding all previously held
expectations and dispelling misconceived stereotypes. Many are able to hold
down a job and live an independent life with some support. Some are able to
drive a car or ride a motorbike, manage their direct payments, and lead a happy
and healthy social life.
And teenagers and young adults with Down syndrome share the same likes and
dislikes as any other adolescent – they like going out, playing sport, music and
popular culture the same as anyone.
Daniel (right) is 24 and went to mainstream school and
college until he was 19, when he managed to obtain
funding to attend Foxes Academy in Minehead.
He is currently living at home but is on the waiting list
for an independent living flat. He wants to work in
catering and has received funding for a work-prep
placement in Frome, Somerset, where he works three
days a week for an organisation providing outside
catering.
He has his own bank account and manages his own
benefits and finances.
He has a good group of friends and a girlfriend. He
belongs to a drama group, and likes going to the pub.
He loves dancing, and recently came third in a local
talent competition.
If teenagers are to become successful adults with Down syndrome, happy about
who they are and optimistic about their future, then it is the years spent at
secondary school that will help them get there.
Objectives of Inclusion
The student will:
 Gain new skills.
 Develop age appropriate
behaviour.
 Develop independent
learning behaviour.
 Develop friendships in the
community.
Some secondary school teachers ask the question: Why is this student coming
here, rather than to the special school, where their needs will surely be better
catered for?
“It is easier to adapt the curriculum to meet
the needs of students with Down syndrome
and their specific learning profile in a
mainstream school rather than in special
provision.” (Prof Sue Buckley, DownsEd)
Research has shown that, comparing like
with like, teenagers with Down syndrome who have gone through mainstream
schooling show better progress academically and socially than their
corresponding peers educated in special
schools*: they are more than two years
ahead in their spoken language, more than
three years ahead in reading and writing, and
they show considerable gains in maths skills.
They are also more included generally
outside of school and display fewer
behaviour problems. This is despite
mainstream schools having larger class sizes and “less specialised” teaching
staff. The answer lies, in our experience, in holding high expectations for
academic achievement and for age appropriate behaviour.
There are examples of successful special school placements, but what the
students with Down syndrome get from attending mainstream classes is access
to more challenging work and, most importantly, they witness and learn age
appropriate behaviour and language from typically developing role models.
They also have more opportunities to develop friendships in their local
communities, alongside their peers and siblings. Teenagers and young adults
with Down syndrome who have gone through mainstream schooling will meet
people in their local community who know who they are and who may even
have been at school with them. They do not get these experiences if they have
been bussed across town or county to the special school there.
*Prof Sue Buckley, Down Syndrome Education Conference 2009
Main findings of the study:



No progress from 1988-2000 for special class outcomes
Significant and specific educational benefits for inclusion
Teenagers fully included in mainstream classes:
 Showed gains of more than 2 years in spoken language skills and 3 years in reading and writing
 Showed gains in maths, general knowledge and in social independence
 Showed no differences in personal independence or social contacts out of school
 Tended to have better behaviour.
See Appendices for graphs and data.
Successful Inclusion
Key factors:




Attitude of the school.
Support and training for staff.
Behaviour of the student.
Ability of the student.
Experience tells us that, in order for
inclusion to work, there has to exist
first and foremost a willingness to
make it work on the part of all those
concerned. The receiving school needs to have a positive attitude, a flexible approach,
and accept that meaningful inclusion will require some changes to the status quo.
These need not require whole school upheaval, but rather small changes which will
make the school that bit more accessible to the student and make his/her time there
easier for them.
Difficulties are viewed as challenges, that can develop teaching skills, and not as
obstacles preventing inclusion.“It is a professional duty for a teacher to meet a child’s
needs, not an option” (Sue Buckley).
But, teachers and support staff cannot successfully include a student with Down
syndrome without additional training, and support from the senior management of
the school. Knowing that you are not on your own in having to deal with an unfamiliar
situation and that you are supported by the senior management and by outside
agencies such as Ups and Downs Southwest is essential.
Other key factors to successful inclusion are, without doubt, the behaviour of the
individual student, and the ability of the individual student. There is no getting away
from the fact that by far the majority of successful secondary school placements are
those where the student has fewer behaviour issues and where he/she has been more
able to cope with the demands of the secondary school curriculum. When the student
has started to display behaviour problems, then schools have been known to give up
and start to become less positive towards inclusion. And schools tend to find it easier
to include a student who is more able than to include a student who is less able.
However, many incidences of behaviour problems are caused by an inflexible system
rather than by the student directly, and many students can find it hard to cope with
work that has not been appropriately differentiated.
Why Inclusion?
Politically speaking, students
with Down syndrome belong
to their local mainstream
secondary school. Having
gone through mainstream
primary
school
and
established friendships there,
it is only natural that they
should move on with their friends to their local secondary school, where they
are recognised by themselves and others as valued members of the school
community and the local community. This is a basic human right and not a
gratefully received privilege.
Teachers constantly tell us of the benefits of inclusion and how the pupil with
DS has made the school a better place. One local primary head teacher recently
stated at an annual review that in the 25 years that she had been head teacher
at that school, she had never encountered a class of children as caring or
altruistic as this particular class, and it was down in large part to having the child
with Down syndrome in it.
Essentially, inclusion promotes better tolerance, patience and understanding of
people with disabilities, and it helps to eliminate prejudice in society as a whole.
Inclusion is not just for the child with a disability. The typically developing
children benefit a great deal too: they
do not patronise their classmate, they
become less competitive and more
supportive of others, they learn to
appreciate diversity, and they learn
that everyone’s contribution is of
value and is important to the life of
the school.