How I feel now and my thoughts for the future.
Nine years down the line, I am happy
and life is content (well, as much as it can be with 4 children). Sam has
every kind of therapy that he can get (and has tried some strange alternatives
too). He attends a wonderful special school where he will stay until he
is 19, I would not like him to attend a mainstream school, as he wouldn't
get the help he needs there. He also receives 24 nights a year respite
care in an institution, (and is about to start some shared care in a family).
This he gets for his benefit and not for mine,as I know that one day he will have to live in an institution, and there
at least he has some kind of social life away from the rest of us and our
pre conceived ideas about him. When he was 8 he started to broaden
his social life by joining the local Gateway club (for children with learning
difficulties) on Saturday mornings. During the summer holidays he attends
the local Mencap playscheme,
which gives me time and space to do things with my other children which
are not suitable for him.
We have attended the Cri Du Chat Syndrome
Support Group annual conference here in the UK every year, and thoroughly
enjoy the weekend. Each year it gets better as we have a sense of meeting
with extended family. (These conferences would not be possible if not for
the sponsorship of the BBC
Children In Need Appeal for to whom we are truly grateful.) Many good
friends have been made, and I get the opportunity to meet adults with the
syndrome - so I can get a picture of what life will be like in the future.
At first this terrified me, and only now am I really able to look past
the disability of these adults and see the wonderful people inside. The
conference relieves the sense of isolation that we all feel and it
is the only time each year that we are just a "normal" family.
Sam is pretty much accepted into our
local community. We live in a small town and so people are used to seeing
us out and about and don't stare too much - even though he does draw attention!
I feel lucky to be living in an age when children who are less than perfect
are not expected to be hidden away. Though society does need to change
it's attitude towards disability and not assume that it is a terrible thing.
Disability in all it's forms is a common thing, and we should all accept
disabled people as part of our community and share in their welfare,
and not take one look and assume that there's no one there!
In many ways, although I have to attend
to all his physical needs, and be constantly aware of where he is and what
he's doing, Sam is the easiest of my children to look after. He is not
demanding, always loving, has no worries, has no behavioural problems (yet),
and can amuse himself for ages.
I am unable to predict the future,
only Sam knows where he's going ad he's not letting on!! But I do know
that he will never manage independently, so I plan to try and find him
a suitable residential place at some time in his 20's, so that he is settled
long before I am unable to care for him. I am told that this search is
liable to take some time. I now work for Mencap on a project called "Face to Face"
which befriends the parents of children newly diagnosed with disabilities so they
can talk about their feelings, know that they are not alone, and that what they feel
is normal! I would not be doing this work if it was not for Sam.
What you can do to help families like ours
in your community!
1. DON'T STARE, we don't always want to be
the centre of attention, and it is difficult to tell who is horrified and
who has a genuine interest - I welcome those people to come and talk to
us, I am very proud of Sam and love to talk about him!
2. DON'T ASSUME WE ARE SPECIAL, everyone
copes when something like this happens in their family, you just have to
go through a period of adjustment as it is such a shock!
3. DON'T ASSUME OUR CHILDREN ARE A BURDEN.
They certainly are not, they bring us all a great amount of joy, and we
are very proud of them and their achievements.
4. DON'T FEEL SORRY FOR US, that would allow
us to wallow in self pity and stop us from getting on with life!
5. ACCEPT OUR CHILDREN FOR WHO THEY ARE
AND WELCOME THEM INTO YOUR COMMUNITY!
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