Friday, October 06, 2006

Back again

Back from a short holiday, I'm hoping to give more thought to where this blog is going and what it's for.

Part of my life is spent looking after children with learning disabilities who have been placed on the autistic spectrum. So I'd like to devote some of my blog to them, to what I believe we can learn from them, and how best to help them and their parents. Today, for instance, Hilary (my wife) and I attended a review at the home of one of them, a boy aged two. He comes to us once or twice a week and usually stays the night. He has a rare neurological condition which afflicts him with, sometimes frequent, epileptic fits. His arms and legs are quite floppy but his back and trunk are strong and firm. He struggles for movement as much as he can, sits up, and tries to crawl.

It seems to me that, like many children with puzzling disabilities, he is being let down in quite basic and practical ways by the way we provide social care. One of the concerns I raised at today's meeting is that little is being done to exercise and develop the muscles that he does not instinctively use. Physical therapy on some of the more floppy parts of his body might help him to discover a use for them that his condition is obscuring. In spite of a good attendance at the meeting of social and health workers, together with his parents and three volunteer carers, it appears that physiotherapy, though requested, has not so far been accessed. We are all doing our best, but our best isn't good enough - for him. His parents are very committed to caring for him and the way he relates and responds to his mother would melt the coldest heart. But it's as if the power exercised by the state somehow disempowers these parents. They are actually lulled into a kind of abdication of responsibility for their own child, whilst a good-enough parent with a bit of power to command the resources that might help him is probably all that he needs to guarantee meaningful progress.

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