keep off

keep off

Sunday, 19 January 2014

Poster Boy

This is my favourite picture of Jamie as a baby. 

A few years after it was taken, we had it blown up to a poster size and we gave it to the special needs nursery that Jamie had started attending. A few weeks later we were told that the nursery had received a couple of complaints about the poster from other parents.  It seems these parents thought it was insensitive of the nursery to put up posters of beautiful, nomal, healthy babies, when the parents were struggling with disabled children of their own.  

Apparently when the parents were told that the picture was of one of their regulars, who had Down's Syndrome, the complaints were quietly withdrawn.


Jamie used to enjoy having a bath, but for some reason he went off it when he was aged about five or six.  At first he used to protest by splashing around in the water, making a mess, and getting told off.  Eventually though he came up with an easier solution - he flushed the bathplug down the toilet.  He also flushed the replacement bathplug down the toilet. 

Wednesday, 15 January 2014

Down's Spectrum

Jamie has Down's Syndrome and he is also on the autistic spectrum.

Raising Jamie has made our lives difficult.  I would describe it as being somewhere between The Curious Incident of the Dog in the Night Time and We Need to Talk About Kevin.  There cannot many people in my position, reading Mark Haddon's book and thinking "I will see your Autism and raise you a Down's Syndrome", but I did.  On the other hand though, I cannot really complain because Jamie has never gone on a killing spree.

Sometimes I tell people about Jamie's dual conditions and then watch their faces as they process the information. Most people do not know what to make of it.  I see them wondering whether he fits the Down's Syndrome stereotype (affectionate, fun loving, gentle) or the autistic one (anxious, distant, brilliant at counting cards in a casino). Surely he cannot be both, as they seem so different?

More often than not, after a few seconds deliberation, they ask the same question:

"Wherever did he get his ginger hair from?"

I don't know what it is about the slightly awkward social situation of being around a disabled child that makes people feel the need to lighten the mood by implying that Jamie's paternity is questionable, and that perhaps my wife has been a little free with her affections and that we are all in fact living a lie, but they do.  Sometimes I see them mulling over the fact that my best friend at the time, Andy, also had ginger hair, and wondering whether or not to mention it.

I am not worried of course.  I know that both Meg and I have relatives with ginger hair, and I know that the only way Meg would ever have touched Andy would have been to push him from a tall building.  Nevertheless, it does seem to bother some people.

What is Down's Syndrome?

It is a genetic condition. A lot of people think that Down's Syndrome is associated with missing chromosomes, but actually the opposite is true.  People with Downs Syndrome actually have an extra chromosome - they have inherited three copies of the genes on chromosome 21, rather than the usual two.  Of course, I do not really know what that means, not being a biologist.  A genetics nurse came round to my house when Jamie was a baby, and tried to explain it to me using diagrams and leaflets, but it did not help.

What is Autism?

People do not seem quite so keen to explain this one to me.  I don't think anyone really knows.

Tuesday, 7 January 2014

Seriously? In January?

When Jamie came home from school today we asked the bus driver if he had been well behaved.  She told us that at one point he escaped from his harness, took all his clothes off, and ran around the bus naked, but other than that he had been fine.