21st March..........

[devientenigma]

................is world down syndrome day. Are we all aware of this and the whole spectrum of abilities/needs and medical complications that can occur with down syndrome.

Who's celebrating??

I think I am pretty much aware my Mum worked in a special school and some children with down syndrome were intelligent enough to get GCSE grades, some had serious health issues, heart problems, epilepsy, autism the list is endless. There was a real mix of abilities but even the ones that maybe had a chance at living independantly had the issues of really poor understanding and often bullying behaviour in society to deal with. WIthout trying to generalise to much because someone will know of positive experiences but on the whole our society is a very unaccepting place for people with all levels of different needs.

Through my DS's friends with Down Syndrome I have become aware of the huge range of abilities and medical issues. One of his friends died age 4 due her heart defect. But without my DS2 with ASD, I would have had no idea that there was a spectrum within Down Syndrome. It's not well known. Any actors you see on TV are unsurprisingly more able which continues the perception that people with DS have only moderate LD. One friend's DD with DS is also autistic, and not HF.

I hope the awareness day has some impact, won't hold my breath, though.

I have spent a lovely afternoon walking along a lake chatting with my nephew (17) who has Down Syndrome. He has 5 GCSE's from mainstream school but is now at a specialist residential college for 3 years. We had a fun time together and enjoyed afternoon tea in a cafe before taking him back to college. If anyone stared at him, I didn't notice - but that maybe because I am now immune to that as I have DD in a wheelchair!!!
I have also met children at the other end of the spectrum and in particular one young girl who was in the same class as my DD at SN school for a while. She had no speech and behavioural problems.
The TV does always seem to portray the "happy, smiling, loving, more able" end of the spectrum though. Perhaps "awareness day" could re-dress the balance a little.