Thursday, 30 October 2008

Is there anybody out there?

I'm not very good at this blogging thing am I? I know you're supposed to blog something every few days and it's been a month! Sorry. Not that anyone seems to be reading it anyway, is there anybody out there?
We've been to Butlins! Now I try very hard not to be a snob. But I have never had any desire to go to Butlins. It's just not our sort of thing. But every year the wonderful people at the Cornwall Downs Syndrome Support Group pay for a child and their career to go on a long weekend. Last year we all went to Disneyland Paris. This year they chose Butlins at Minehead. And we had a great time.
Of course Jamie doesn't have Downs, he has Sotos (and they have just decided he's autistic as well). But because there isn't a local Sotos group, or a national one come to that, we have joined the CDSSG. It came about because we joined the Little Rays of Sunshine group in Bude. It's a local support group for children with special needs and their parents. They're a great group and I urge you to check out their website. Anyway the majority of the kids have Downs and everyone belongs to CDSSG. Although a lot of the specialist help they provide it connected with Downs it is useful for any child with special needs. And a lot of the challenges faced by Downs children are faced by most special needs children.
So off we went to Butlins. And Jamie went back to his bad night time habits. Three night without sleep wasn't much fun. But being with so many people who all go through similar stuff makes it much easier to handle. And all the kids had so much fun. It's lovely to see them being children. So often when they are alone or with mainstream kids their difficulties stand out so much. When they all get together they're just a group of kids having a blast together, fantastic.

The older Jamie gets the more aware I am of his problems and how they come across. The constant 'singing' and flapping his arms and going off in his own little world was cute when he was little. No one took that much notice when he was a toddler. Now he's nearly five and on the big side for his age it's become more obvious there's something wrong. I've started to notice people looking at him more lately. But he is so adorable, all those blond curles, and so happy and well behaved, that it hasn't been a problem so far. Not that it would be a problem to us anyway. He is what he is and if other people don't like it, well tough quite frankly. But I worry. I worry all the time about the future. When you suffer from depression you find yourself thinking about death a lot more than most people. Not always in a bad, suicidal way, but you're very aware of your own mortality. So I'm well aware that I'm not going to be here forever. At the same time I'm only 34 so I hope I've got a while yet. Never the less I'm already worrying what will happen to Jamie when I die. The thought that he'll end up in some faceless institution horrifies me. And I know how stupid that is because he's not five yet for goodness sake. The trouble is that now they have decided he has autism as well it makes it worse. Quite often with Sotos they catch up. Most Sotos children have caught up with the mainstream by their mid teens. And the Hydrocephalus can be managed. But Autism is a different kettle of fish altogether. A lot of autistic children never move on. What worries me is that the way Jamie is now might be the way he is forever. When it was only Sotos I didn't worry quite so much because all the evidence suggests he will, eventually, catch up and lead a more or less normal life. That might not happen now.

But he's so happy. I suppose, at the end of the day, that should be the main thing. Long ago I gave up on any dreams I might have had about him becoming a brain surgeon. If he can have a happy life, whatever form it takes, then that's what matters.