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Living With Cerebral Palsy

Article published 8th June 2008

Child with Cerebral palsy

 

There is great debate about where a child should be educated. I have been to both special and mainstream schools. I believe, regardless of disability, a school should explore you as well as you exploring it.

Howard Sanders was born with cerebral palsy. Here he describes his experiences of both mainstream and special schools and his desire to experience normality.

Born different

I was born in the mid-1980s, 10 weeks prematurely, which resulted in me developing cerebral palsy. (Premature, low birth-weight babies can suffer head trauma, leading to damage to the part of the brain that controls motor function.) In my case, this only affected my ability to walk. The early years were difficult. Cerebral palsy affects every part of your life, creating problems parents may find difficult to deal with. It is a ‘brick wall’ feeling – you can push and push, but the wall will only give so much, then it cannot be moved any more. People deal with things differently; my parent’s response was very focused, almost obsessively committed to obtaining the best possible support for me, in all ways.

Getting help for cerebral palsy

First stop was the Peto Institute in Birmingham, to undergo conductive education. This regime, a strict programme of learning and exercises, is designed to improve mobility and achieve greater personal independence.

In my case conductive education was designed solely to improve my mobility and flexibility. Contrary to conventional medical expectation, I was walking by the age of 6.

Cerebral palsy and junior school

After this success, I went to The Dower House, a local independent junior school. For two years it proved an excellent school, but gradually I began to slip behind my peers, particularly in basic literacy and numeracy. My parents decided to send me to a more specialised school that could help me academically: Birchfield School in Albrighton.

Unfortunately they weren't equipped or able to accommodate my physical needs. I became isolated, and within a week we parted company!

From there I went to Grange House, an independent school in Herefordshire. This was great. Thanks to the support of a teacher called Mrs Taylor, affectionately known as Mrs T, my literacy skills developed in leaps and bounds. Unfortunately the school began to experience difficulties; I left in the spring of 1994. I am not too sure whether the school still exists; I hope it does as it did a great deal for me.

Senior school

Last stop was Bredon School near Tewkesbury. Without doubt, a turning point in my life. The school was quirky, a little odd; full of characters; you had to be strong willed and stand up for yourself, but it was absolutely superb in what it did for me.

It improved my basic skills, developed my independence and made me a more rounded individual. They didn't always get it right – in swimming classes I was automatically placed in the training pool with kindergarten children. I remained in the training pool for the whole academic year. Actually, I had a lot of swimming ability, but they didn't assess my abilities in the same way as the other children – they made assumptions without actually finding out, thought that because I used sticks, I didn't have a voice. They tended to ask others about me, and use their opinions as facts. However, in other areas I was given support to develop, though often this only arose because I stood up for myself, became strong in how I dealt with things.

For a disabled person, the crux is support and the whole point of support is to provide a sense of normality.

But what is normality? Is it black, white, rich or poor? A house in the Cotswolds, or a caravan on someone else’s land? Without support, I think you are constantly teetering on the edge of craziness with an almost obsessive desire for normality, even though you are not sure what that is. If the school has a well thought out learning support system, which gives support to the child, the teachers and the parents, then I favour a mainstream education. I found the expectations much higher in mainstream; I developed faster, and more completely as a person. I believe there is a danger that by categorising disabled children they are not allowed to stretch and increase their abilities – lack of achievement is therefore a self-fulfilling prophecy.

What's normal is what's normal for me

Disability is not about easy, straightforward answers – there is no right or wrong, there is only more right, and more wrong. I think the only person who can define what is normal is the individual. My views have changed from those of a child with no concept of difference, through teenage depression, made more acute by a sense of my own difference, to where I am now: successfully completing a degree course at Wolverhampton University, something I have only reached through support, and developing and accepting my own perception of normality.

For me it’s been a lonely journey, one I had to explore for myself. My parents supported me in the journey, but as my mother used to say to me, ‘I can’t do it for you.’

 




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