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The power to change
Amanda Kirby: "As a doctor, you think you should have the answers"
Imagine going through life wearing boxing gloves and looking through binoculars the wrong way.
You would probably be a bit clumsy and stumble around. It is how Amanda Kirby describes the world of children who suffer from dyspraxia - a neurological disorder that impairs the organisation of a child's movement.
"As a parent you always want to have your children as perfect as possible. It's frustrating in the sense that, as a doctor, you think you should have the answers," says Amanda, who is featured in the BBC's Medicine Women series. Professional cynicism Not everyone in the medical profession is prepared to accept dyspraxia as a diagnosis. There are some who view it as the new vogue to be used as an excuse for the behaviour of every difficult child.
"I'd experienced 10 or 11 years of not really knowing what was wrong with him," says Amanda. "He didn't start crawling when he was supposed to crawl. He was late walking. He was slow talking. He was a very floppy baby. We finally went to see a paediatric neurologist who gave the diagnosis." As well as motor problems, 12-year-old Andrew has visual difficulties. Dyslexia makes it difficult for him to read his own writing.
Amanda's frustrations with the attitudes of others and with the services on offer led her to set up the Dyscovery Centre in Cardiff - a private centre for assessing and treating children with dyspraxia. About eight per cent of children are thought to have the condition. They travel to the centre from all over the UK. A full assessment for treatment can cost as much as �700. But the centre provides a range of much cheaper services, down to over-the-phone consultations and information packs.
Therapists employed by the centre use games and exercises to help the children understand and control their bodies. Special glasses can deal with some visual problems. Buttons and laces Jeanette Turner was in despair before she took her son Aaron to the Dyscovery Centre. She knew there was something wrong with the 10-year-old boy when he could never do the buttons up on his clothes. But her concerns her always dismissed by doctors who believed she was just being over anxious.
Aaron says: "Me and mum used to sit on the stairs crying. I knew there was something wrong. Before we went to the Dyscovery Centre I thought I was the only child in the world who couldn't do anything, and people told me I was dumb." Arron is now making good progress. Learning curve Aanada gave up a partnership in General Practice to enable her to spend more time on the Dyscovery project.
"You don't often get given a blank sheet of paper to change things." "We've got a long way to go in this country in accepting that these children are not clumsy. They've got specific criteria that they fall into that are different to other children. "We've got a learning curve to teach the medical and the educational professionals that this does exist." |
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