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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.