Charting the unknown

When a disability is rare, teachers and Sencos can be in unfamiliar territory. Fiona Leney reports on how they can learn from the experts - Jthe child's parents

You've done the special needs training, got a great special needs co-ordinator who works closely with you - but what do you do when you get a disabled child with a condition neither of you has dealt with?

When that disability is rare, with perhaps only a few thousand afflicted nationwide, teachers can find themselves working in a position of ignorance, unsure what expectations they should have of sufferers, not knowing what is a behavioural trait of the disability and what is naughtiness.

Most of us know about muscular dystrophy, but few will have heard of Duchenne Muscular Dystrophy (DMD), a form of the disease that affects 2,000 to 3,000 boys in the UK, confining them to a wheelchair by the age of 10, and killing them, if no treatment is given, before they are 20. Even fewer people know that what presents as a muscle-wasting disease can also bring with it serious learning difficulties and behavioural issues.

Nick Catlin and Janet Hoskin's son Saul was born in 2000 and diagnosed shortly afterwards with DMD. Their lives were devastated by the diagnosis, and by the ignorance that surrounds the condition. This prompted them to set up their own group for parents.

"Few people had heard of it when we started our group, so we decided to pull together everything we thought parents, carers and teachers needed to know," Nick says.

The result is an impressive "toolkit" - a thick booklet which sets out what the disease is, how to get assessments done, and, most helpfully for teachers, what effects on behaviour and learning the condition can have, including teaching tips for overcoming those problems.

Nick and Janet began work on the toolkit in response to requests from parents and professionals who felt that children with DMD were getting a raw deal at school, simply because there was not enough information in the public domain about the condition and the way it affected learning.

"What we need to say to teachers and Sencos is that while DMD is clearly a physical disability, the danger is that concentrating on that aspect stops them from appreciating the problems it can cause with behaviour and learning," Nick says.

"Children with DMD are missing a protein called dystrophin from their muscles and their brain. Without dystrophin in the brain, some areas may not function as efficiently, and this probably results in the learning problems that children with DMD have."

Nick says there is a definite pattern of DMD behaviour and learning problems which is going unrecognised in schools. Boys with the condition have specific verbal and memory span problems, which can affect early reading because of their difficulty with phonic processing.

Behaviour, too, can seem defiant as children find it difficult to retain and process strings of instructions. A request from a teacher to "tidy your things, pick up your books, take them over to the shelf and put them away"

may be ignored or only partially followed, not because the boy is naughty but because he can't remember what he is supposed to be doing.

"Bad parenting is sometimes blamed, which is not helpful. What we are asking teachers to do is to get a full assessment of any child about whose behaviour or learning they have worries. Look beyond a quick-fire assessment that says 'this is purely a physical disability'. And see parents as allies, ask them the right questions about their child, so that we can work together."

The value of the toolkit for teachers and Sencos is that it offers not only an overview of the condition and teaching tips but a checklist in the case of a child who may not be diagnosed yet.

Positive feedback has already come from professionals. Anne Levis, special needs co-ordinator at Saul's school, Henry Maynard Infants in northeast London, says the beauty of the toolkit is that it can be handed on to new teachers as Saul progresses through junior and secondary school.

"Saul is the first child I have had with DMD, so it has been really useful.

I've never had anything like this from a children's charity before," she says.

And, for boys suffering from DMD, learning is all the more important since their disability means they cannot enjoy physical activity as much as their peers. According to Nick, "They can access a whole world on the internet with just a few flicks of the finger. But to get the most out of that, they need to have basic literacy skills."

To get the toolkit, contact Parent Project UK at www.ppuk.orgNick Catlin can be contacted on

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