The harsh reality of making choices

1st November 1996 at 00:00
Adrian Mourby ponders his decisionto send his son to a special school.

In the house where I grew up we had a real fear of abnormality. People whose children wore leg irons, or lolled from side to side in a wheelchair, were looked on as if they'd been visited with some dreadful affliction. I have vivid memories of my mother telling me that women who have a child in their forties are prone to Down's syndrome babies. I had wanted brothers and sisters but, as a result of my mother's words, I would pray at night that my parents wouldn't risk more children.

It was ironic then that my daughter was born with her food pipe and stomach disconnected and my son with Asperger's syndrome. Miranda's life was saved by surgery but she was in a lot of pain for the first two years of her life. I can remember signing the consent for three operations before Miranda was able to live like a normal child. As a result of this experience, when John was born we immediately asked the doctors to check that there was nothing physically wrong with him and indeed there wasn't. Asperger's syndrome is a form of autism and it only becomes apparent when the child starts to communicate.

John was late talking and could only make himself understood in very formal phrases. On the positive side, however, he was affectionate and occupied himself for hours making things out of Lego, Brio and Duplo.

We only realised he had a problem when he went to his first nursery. John found the noise and the presence of other children disturbing. He was disruptive, and even violent if made to conform. When John went on to the infants things got worse. He was often at loggerheads with his teacher and a spate of soiling incidents caused us to seek medical advice.

It was then that we discovered that John had what some people describe as "an extreme form of personality". Drugs have been tried on autistic children but the general belief today is that, as you can't cure the condition, behavioural modification is the answer. We had hoped that this could happen in John's current school if the local education authority would provide classroom "support" but that was not forthcoming. The choice before us came down to sending our son to a special school or letting him languish, unsupported, in mainstream education.

Politically and emotionally, I would always favour the inclusive education of disadvantaged children but when it is not on offer, what do you do? This question was made slightly easier for us when we visited an excellent local authority establishment for children with behavioural difficulties. Although many of the pupils were in a worse state than John, we did warm to the school's ethos of "turning around" Asperger sufferers, helping them find ways to cope with the world and getting them back into mainstream education.

John started at The Lindens on October 29. While we were waiting for him to go there, I could not help fearing that we might regret this step. There is a stigma attached to special schools. I overcame this in order to nominate John. But will he thank us for that decision? John is now six and aware that he does not fit into his present class. How aware will he be of the fact that he has been moved to a school where the children have much greater disabilities than his? Will he forgive us in the years to come? How will John feel if his friends tell him, as children do, that he is going to "the Loony school" now?

Would he prefer to have remained the class fool, dragging academically behind at our local junior and infants?

I signed the forms for my daughter's operations believing I had no choice. It was much less easy signing the forms for John knowing we had choice, and might make the wrong one.

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