Team spirit

14th July 2000 at 01:00
Jane Parkinson shares her experience of placing her son Alex in a mainstream school

When I chose for my son, Alex, to go to West Oxford community school, a two-storey 100-year-old building with concrete stairwells, I was not thinking very clearly about the future - I just liked the school. He started in class one at the age of five. Three years and much fighting later, our local education authority agreed to install a platform lift that would enable him at last to join his peer group and his mates, who all went upstairs to class three without him at the beginning of this academic year. Many unforseen hitches prevented the lift from being fitted in the autumn when it was needed - such are the additional problems that seem to be part and parcel of the practical difficulties that accompany having a severe disability.

Alex, now aged nine, needs a platform lift for his powerchair because he cannot walk - he also cannot speak very clearly, and cannot feed himself. He has athetoid cerebral palsy (lots of involuntary movement, unlike spastic cerebral palsy) and, although he is intelligent and thoughtful, he also has associated learning difficulties - partly because he was unable to go through any of the physical stages babies and toddlers go through to learn about the world around them - and still inevitably misses out on many important learning experiences. He is able to read well and to write on his laptop but, like many children with cerebral palsy, he has great difficulty with even simple maths concepts.

Until last summer, Alex attended a special school for children with physical disabilities three days a week. I felt too much of the time there was spent queuing for toilets, waiting for equipment to be set up, waiting for hometime minibuses to be loaded and doing academic work below his ability. Also, the lack of hustle, bustle and chatter around him meant that he was not very stimulated socially. And anyway, poor resources and cutbacks meant it did not provide more or better therapy than he gets now through the community services: about 15 minutes' speech therapy a week, 30 minutes' physio-therapy, and that is about it.

Since attending mainstream school full-time, he seems happier. He is positively learning in every way and is an accepted member of our community. He has never been teased or bullied there. This is partly because the children know him and understand something about cerebral palsy. Alex is not seen as different; instead, every child is recognised as different and he is just one of them. There are a couple of pupils who have disabilities as well, though less complex ones, and there is a good general mix of economic and cultural background and academic ability.

Alex has made his first best friend, a boy of his own age, and the other pupils share their crisps with him and work with him in his class group. He comes home positive ad enthusiastic about school, sleeps and eats well, and seems to be learning at a faster pace than before. One day, he came home from school and managed to tell me all about poppies and Remembrance Day and war. He told me that everyone had to be silent and listen for the canon shots far away in the sky, which sound like fireworks. For a child with immense problems communicating with others through speech, I thought this was quite amazing.

It is not all plain sailing. Much depends on good management of his welfare and education from all aspects - going to the toilet, being fed, getting exercise and so on. We depend on the open-mindedness and goodwill of his teachers, his learning support assistants (who are atrociously paid for doing a hugely responsible and demanding job), on the rest of the team of therapists, and on the co-operation and back-up of the education authority.

There is a need for good teamwork among the adults who are involved with his placement, including myself. We have a dynamic and forward thinking co-ordinator who makes sure things run smoothly and helps everyone to sort out problems as they come up. One of our ongoing problems is, ironically, how to find ways of safely leaving Alex alone with other children without the constant presence of an adult and another is how to find ways round the limitations set by health and safety rules. With a rather dramatic startle reflex, Alex finds the general environment of the school disturbingly noisy, especially at lunchtime. We are teaching him techniques to use to shut out noise, to calm himself down, to concentrate on his immediate surroundings and not the greater chaos - and I am sure that these techniques, as well as the experience of socialising with all sorts of children, will stand him in good stead in later life and help him cope better with his disability.

A problem to which I have so far failed to find a solution is that he does not often get invited to birthday parties or round to other children's houses to play. On more than one occasion, a child has told me: "I wanted to invite Alex to my house but my mum wouldn't let me." I can only surmise that it is the parents who still have problems with the idea of disability and, whether through nervousness or ignorance, would rather not take on the responsibility of having Alex round to their homes.

As far as Alex himself is concerned, his current biggest problem is that a little girl in his class who he is in love with ignores him. I am assured that many of the boys have the same problem but of course I cannot help worrying about this aspect of Alex's future.

In terms of general acceptance and genuine friendship, I feel sure that the children we know will grow up to be far more broad minded than their parents as a result of this experience and consequently will be part of a more tolerant and understanding society.

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