Wednesday, October 25, 2006

When your number's up

We've just heard from a friend of ours that her husband has a ninety per cent chance of being cancer-free after a course of radio- and chemotherapy. He was recently diagnosed as suffering from prostate cancer. I wonder what it really means? - to have a ninety per cent chance? Ninety per cent of what? The only thing that's hundred per cent certain (apart from taxes) is death. Does that mean he's more likely to die than recover, or recover than die, or recover then die?

And does the ninety per cent take into account his life expectancy anyway? He's sixty-one. Is he more likely to die of old age or something else before he recovers from this particular illness?

Percentages cannot be applied comfortably, let alone accurately, to human life. We acknowledge this implicitly by omitting in a case like this any consideration of a wife's committment to her husband's survival. If asked, she might reply that it is one hundred and ten per cent! So much for mathematics.

Tuesday, October 24, 2006

Not such great expectations

Sadly it isn't always that expectations are pitched too high. If so then at least the more able children would be fully extended. In our experience this is not so.

A third child we look after is a boy now seven. When he first came to visit us three years ago, his behaviour was at times that of a feral child. Every boundary that was set for him he would simply charge down. Always he was running away; escaping, through doors, over walls and fences, out of bed, down the stairs. Gradually, as we grew in confidence in our handling of him, he came to trust us sufficiently to accept the boundaries we set for him. As a consequence, his time with us now (one sleep-over a week from school, and one weekend a month) is eagerly looked forward to both by him and us, and passes much too quickly. In fact we have lately begun to invite another boy to come for tea and play for a while. It's amusing to see the first child giving the other one the benefit of his experience when it comes to "the way we do things here".

The pity is that throughout the past two years of his considerable progress here, the boy's mum has continued to report the same unruly behaviour when he is at home. We have tried to pass on such simple wisdom as we possess, around matters like bedtime routine, but what this boy needs is consistency. Above all he needs to know that attrition will not always get him what he wants. For too long his mum, even with professional support, has not felt able to deliver this, although at last we are beginning to see more hopeful signs.

The greater disappointment we feel is with his school. He goes to the same special school as the nine-year-old girl but is far more advanced in his ability to socialise and communicate. We have sought to give him structure for his speech and to encourage the use of sentences. We have read with him and taught him rhymes and songs. Yet, presumably because this is not being sufficiently reinforced at school, he quickly lapses into single-word, baby language. At times he regresses so much that he is barely able to achieve the level of sentence-making and pronunciation he had reached two years ago.

A great deal of time and money is being expended through social and educational services, on each of the children I've described. But how can we optimize the advances they make?

Sunday, October 22, 2006

Biting off more than she can chew

Good news about the little boy in my last posting. We have heard from his physiotherapist. She has arranged to visit him while he's with us.

Another child, a girl aged nine, also has a diagnosis of autism. She goes to a special school and once a week comes home to us on the school bus. She then sleeps over so as to give her mum and brother a much needed break. Her intelligence and ways of communicating are very specialised. More than anything she needs to feel safe and moderately understood. Hilary and I have discovered slowly where her particular wavelength is, and how to get on it. We do wonder though how some of the experiences offered to her in school can possibly be constructive.

To take one example again, it is hardly likely that she would find a visit she made recently to a local mosque the least bit meaningful. Her understanding of her own family's Christian faith is typified by her description of a crucifix as 'Jesus' on 'a cross', feeling 'sad'. Now to stretch her religious knowledge within the familiar setting of her native faith is one thing, but to challenge her powers of comprehension by introducing her to other religions is surely a case of biting off more than she can possibly chew.

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.