Learning Throughout Life

Living and Learning

Making the most of opportunities
by Ros Allen

When our child is born with Down syndrome, we feel immediate shock, disbe-
lief and enormous sadness, for both ourselves and for the unknown future of
this child. For many days, months, even years we feel unable to see any way out
of this consuming ‘fog’, and the day-to-day burden of life bears heavily upon us
as we struggle to come to terms with the direc!on we should take.
Firstly, we have a child who needs all the love
and aenon it deserves, and we should
never forget this. As our lives return to some
sort of normalisaon, we begin the task of
giving this child every opportunity to achieve.
It is important that as parents or primary
carers we acknowledge that our child with
Down syndrome will rely on us to encourage
and extend their learning throughout life if
we are to help them reach their full potenal.
There is no manual to follow in the ‘learning’
our child needs over their lifeme. We all
go on learning new skills as we age, so why
expect a child with a disability will not be able
There is no
to?
manual to
follow in the
‘learning’ our
Planning and goal
child needs setting - achieving
over their
life!me. We
independence
all go on As our children age and progress, too o!en
we are reminded by professionals that
learning new children with Down syndrome will plateau,
skills as we
and therefore we should be realisc about
age, so why their levels of achievement. Many of us have
expect a child heard teachers remark that they feel ‘John’
may never be able to master this task, or be
with a disabil-
independent.
ity will not be
able to? It is commonly agreed that people with Down
syndrome are happy to conform to the level
of expectaon, so if this is low, then obviously
so will be the results. We must aim high, both
for ourselves as well as for our child with a
disability.
Achievement and success lead to
independence, and this should be our goal for
our children. With independence comes our
own freedom as they become less reliant on
us.
Those parents who have older children are
constantly reminding us of their excitement
when their children achieved both minor and
major milestones, though o!en outside the
me frame when ‘normal’ children learn.
For example, ‘Sally’ has finally learnt to tell
the me at 18. Somemes the relevance
of learning that task is emphasised by a
need. ‘Sally’ may want to watch a program,
go shopping with the family, visit the
grandparents, (together with a whole host of
incenves we can think of!) Most importantly,
‘Sally’ may finally have seen the benefit of
achieving this milestone herself and the
independence she can gain.
Learning to read defines a level of
independence, like telling the me, being
able to cross the road safely, go to the toilet
independently, feed oneself, ride a bike, travel
independently, stay home alone, e shoelaces,
and a host of life’s other skills.
To achieve many of these tasks, the road
seems daunng and almost impossible. But
given me, paence and planning, goals can
(and should) be set.
It is important to remember that each rung
up the ladder of independence is slow and
repeous, with emphasis given to rewards
for the smallest success.
Parents are not the sole
educator of their child
As parents we must not feel over-burdened
with the sole responsibility for teaching our
children. It is most important that the ‘goal’
to be achieved is known by all those involved
in your child’s life. Teachers, grandparents,
neighbours, respite carers and others can

page 8 VOICE The Journal of the Down Syndrome Associaon of Victoria SPRING 2007

share the desire to reach this goal together.
We all know that any child can resist parents,
so it is good to encourage others to help
your child reach the set goal. Who does your
child respect and listen to, and can they be
encouraged to share the burden of teaching?
Risk taking to achieve
independence - think
outside the square
We o!en insncvely move to protect our
children, o!en without realising. It may seem
easier to not allow the task/acvity to take
place. There may well be an element of risk in
a task, and you queson at what point should/
could you allow that risk to be undertaken.
But without taking risks, we never know a
person’s ability.
It has been well documented over the years
that people with Down syndrome have
become more independent when their
circumstances change and expectaons are
different, even though their lives may have
been stac for many years. Suddenly there is a
whole range of new skills learned.
Relevant for the age of this child, help
and encourage them to obtain the result.
Rewards may come in many forms, and food
is probably not appropriate. Make sure this
reward comes at the point of achievement,
not days or weeks later.
Create a chart, and what the outcome can
achieve - if communicaon skills are low,
pictures will be appropriate. Breaking down
the task and building up to a result may be
beneficial for more challenging goals.
In life there are many opportunies for us to
teach our children in an unstructured format.
From everyday tasks an independence skill
can be developed:
- crossing the road without you
- shopping and money skills
- reading maps and street signs
- staying at a friends place
- going to camp
- walking the dog
- riding a bike
- going to a movie with a friend (no adults)
- travelling on public transport independently
- taking a taxi
There are so many more examples, each with
an element of risk.
VOICE The Journal of the Down Syndrome Associaon of Victoria SPRING 2007 page 9
Learning Throughout Life
Se%ng goals and gaining success will not
only make a difference to your child, but to
the whole family. These skills, once learned
and pracced, become skills for life that will
enhance the quality of life you all can live.
Independence and
social skills learned for life
One of the most inclusive acvies is eang
out. The opportunity to encourage reading
skills (menus), social skills, learning how, when
and what to eat, being paent, making choices
(hopefully healthy) and handling money all are
important steps to achieving independence.
In gaining independence, correct social
behavior is important for our children’s
acceptance within society. Children with
disabilies learn so many more life skills when
they are part of mainstream society, and being
visible increases the public acceptance of them.
We owe it to our children to give them every
chance to learn and become an independent
member of society. Most importantly we need
their independence to achieve ours!
Travelling Independently
a parents story
“I remember the first !me our son went on a train by
himself. Scary is not a strong enough word!”
We bought the ckets, saw him off from the pla&orm and
had him call us on his mobile phone. When he arrived at the
desnaon we screamed with joy, knowing how important this
was for his self-esteem and confidence and what a difference this
independence would mean in his life and ours.
Life has moved so far from that first major risk, but he has always
had a carer with him – his mobile phone. At all mes we are
rung on leaving or arriving at a point, so we know where he is.
We have encountered problems – the phone has been lost, the
staon missed, the train taken in the wrong direcon. Talking him
through difficult situaons and working out what to do proved a
challenge to us as well - but it has enhanced his ability to cope.
Along with his new found freedom came the need to learn about
money. Yes, that was difficult - having the right money for ckets,
machines not working and lost ckets, but his ability to handle
money grows daily.
What he now knows, compared with when he le! school, would
never have been achieved if we had not let him take a risk.
Wri$en by a risk-taking parent