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VOTE for Isla!! My friend's daughter who has Down Syndrome is in a competition to be the new face of Kinder. Please do take a minute to enter - Face of Kinder
Downs
Syndrome
Freddie,
our middle son, has Downs Syndrome so I thought people might be interested
in knowing a bit about it. The best description I have read was written
by Pam Wilson and the original can be seen at http://www.nas.com/downsyn/welcome.html. Downs
Syndrome is the result of an extra chromosome and occurs in about
1 in 700 births. Freddie has got a photo of his own chromosomes clearly
showing the extra number 21 - see here.
Only
a few decades ago, the effects of Downs Syndrome were usually very
serious and not long ago life expectancy was only 10 years. People
with Downs Syndrome were never expected to achieve much and many were
brought up in institutions.
Today,
things are very different. Medical advances mean that most of the medical
complications can be fixed and life expectancy is now 60+. People with
Downs Syndrome typically have a degree of learning difficulty, but
advances in understanding how these children can reach their potential
has transformed what children and people with Downs Syndrome are able
to do.
Freddie
does find learning new things a bit more difficult and he has significant
problems with speech, but aside from that, he is just one of our boys.
We do things just like any other family and Freddie goes to the local
school where he is fully included with a support worker to help him.
He is fairly good at reading, can do basic maths, counting and adding.
He has lots of friends and is fully included in the community just
like his two brothers. We have used Makaton signing
with Freddie since he was a baby and have found it a life saver given
his speech problems.
You
can see a montage of photos of Freddie from 0 to 8 years here.
Here is a short
book (pdf) I've written
to help children understand Freddie and what it means to have Downs
Syndrome.
In 2007 Freddie was fitted with bone anchored hearing aids, see more.
In 2009 Freddie had a staring role on the Mencap website. Read all about it here.
There
is lots of information about DS on the internet, here are some
of the ones I've found most interesting.
We
also have a local support group here in Bristol at http://www.dsa-bristol.org.uk
If
you would like to find a support group in your area, then contact the Downs
Syndrome Association who should be able to put you in touch with
one.
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