Touching Lives - December 2003
My story: Living with dyspraxia
When Elizabeth Hayden takes her son George to the bus stop in the morning, she knows his day at school is going to be a success.
But it wasn’t always like that. George, now 12, was recognised as having developmental co-ordination disorder (dyspraxia) when he was very young, and his primary school years were fraught with difficulty.
George struggled with tasks other youngsters managed easily; things like getting himself dressed, writing and learning to spell. It undermined his self-esteem, dented his confidence and made him dislike school intensely — but what really hurt was the lack of understanding about his condition.
Mum Elizabeth told Touching Lives, “It’s hard to describe to people, but for George simply putting his own coat on was an impossible task. He has a late birthday and was only just four when he started school, and I knew he wasn’t really ready — he was still needing a sleep in the afternoon.
“He struggled from the start, but I got really concerned when one teacher said that what George really needed was ‘a good kick in the pants’.
“I couldn’t believe that someone could be so insensitive. We have three older children and knew from a young age that George was different. He had always been slow to try new things and as he grew up it became very obvious to us that he had problems, but ^getting help wasn’t easy and there were days when I would dread having to send him to school when I knew he hated it so much^.”
George would simply refuse to leave the car, and even try to run back home. For the family, who live in Ilkley, West Yorkshire, it was a traumatic time.
George was assessed but his condition not identified. Not surprisingly, his schoolwork suffered and he began to fall behind.
Elizabeth said, “When I asked for just five spellings to learn instead of 20 they said no, but I knew that there was no way he could learn so many at one go. He was expected to read a book a day, but it took him a week. We just needed a bit of understanding and a bit of extra time and it was tough on us all — especially George.”
When he moved to another primary school George was met with a different approach. His problems were identified but getting help became a nightmare of red tape. Ironically, although George clearly had co-ordination difficulties, his verbal skills were good and he wasn’t judged ‘bad enough’ to qualify for additional help.
It was then that George became part of a study into dyspraxia being funded by Action Medical Research. He was assessed by Dr Mary Chambers and started a programme of simple exercises designed to improve his co-ordination.
Elizabeth continued, “It was simple things, like bursting bubble wrap between his fingers, but it helped with his co-ordination. And by playing memory games, it helped him remember things better. I felt that at last he was getting real help for this ‘hidden’ disability and that people finally realised that we weren’t just making excuses for him.”
George is the youngest of the four Hayden children. Sister Rebecca (20) is now at university, brother James is 18 and sister Rachel 15. His parents Elizabeth and Liam run a newsagents shop in the centre of Ilkley.
Elizabeth said, “As the baby of the family George has had to ‘compete’ at home, and in some ways I think that added an extra pressure, which seems so unfair. But he’s definitely improved and it’s touching to see how hard he tries.”
George is now thriving at high school in Harrogate. The staff there give him the extra help he needs, although some tasks requiring co-ordination are still causing difficulty.
For example, he’s a competent swimmer — unless he has to do breaststroke, when he can’t get his arms to move the right way at all.
He’s managing well academically thanks to the extra learning support and the enthusiasm of the staff, and as he gets older he’s better able to cope with trips out to the cinema or the shops.
Elizabeth said, “George asks a lot of questions about places we are going and people he will meet, as if it helps get it set in his mind. Watching the television can be difficult because he’s constantly asking us about things. He can get quite worked up before a big event, so ^I’ve learned to play things down so that they don’t bother him and cause him anxiety^.”
She added, “George is very happy at school now and has much more confidence. His teacher always stresses to his pupils that everyone has a talent for something and I think that’s true.
“I’ve heard that in America dyspraxic people are actually sought after in some jobs because of their attention to detail and ability to visualise. George has always been excellent at things like Lego and at navigating his way around new places. One of my friends says that George will go far — and I think that he will.”
Helping children achieve their potential
Action Medical Research is currently funding two studies into developmental co-ordination disorder, also known as dyspraxia or ‘clumsy child’ syndrome. It can range from mild to severe and affects an estimated five per cent of the population — which means that in most primary school classes there will be a child displaying at least some of the characteristics.
David Sugden, Professor of Special Needs at the School of Education, University of Leeds and researcher Dr Mary Chambers have been working with a group of primary school children in Yorkshire for the past four years on a third Action Medical Research study which has recently concluded. They have seen an improvement when children with the symptoms of dyspraxia are given regular exercises and tests to improve co-ordination skills.
Dr Chambers said, “We feel it’s vital to reach children at Reception or Year 1 because children with developmental co-ordination problems can find it hard to achieve schoolwork on time, their handwriting can be very slow and they can struggle with basic tasks such as getting dressed and tying shoelaces. Even walking across the classroom can be a problem for some. ^It can lead to a loss of self-esteem and put them at a big disadvantage academically^.
“We still don’t know the root cause of the condition — messages in the brain are obviously not getting through properly — but we do know that we can help children if we catch them young. Unfortunately it doesn’t seem to be considered a priority. It’s not classed as a disability as such, but it can have a profound effect on daily life.
“Without intervention, children can reach adolescence not being able to do things like use a knife and fork properly, navigate their way around a larger school or remember books they need for homework. As they get older they find ways of avoiding the tasks they can’t master, but from the children we monitored for the Action Medical Research study we know that with help, they can improve.”