When parents are the experts

2nd December 2005 at 00:00
Hilary Wilce talks to Martin and Sheila Hollins about bringing up children with learning disabilities

Martin and Sheila Hollins had never written a book together, but when they embarked on writing one for parents of children with learning disabilities they found the words flowed easily.

Their task was to look at the development of such children within the context of normal child development, and their aim was to encourage parents to realise that every child is unique and they, more than anyone else, are the experts on their own particular child's needs and progress.

What made it easy was the huge volume of experience they brought to the task. Sheila is professor of psychiatry of learning disability in the division of mental health at St George's, University of London. Martin is a former QCA science consultant and nationally-known science educator and writer with a keen interest in how children learn.

They know their stuff when it comes to learning disabilities and child development but, even more importantly, they have an adult son who is learning disabled, and their experience as parents is by far the biggest influence on this book. "It's all about coping and finding the positive,"

says Sheila.

"When you're a parent with a learning disabled child it can be hard dealing with all the people who have the answers, the ones who say why don't you do this, why don't you do that. It saps your confidence. The families in our book are all people who are finding their way through, and our message to parents is that you are the experts about your child. Parents often feel they aren't heard, or listened to, but they do really know something."

The book is divided into sections from babyhood to young adulthood. Each section outlines normal child development at this age, then looks broadly at the kind of difficulties that might emerge for children with learning disabilities and what educational options might be available. It spells out how the SEN process works and looks at issues such as how growing children can be encouraged to make friends, deal with puberty and move towards adult independence.

"We didn't focus on diagnosis. Each person is unique and has their own journey. And we don't necessarily expect people to read the whole book,"

says Sheila. "If you were a parent whose child had been newly diagnosed, for example, it would probably be quite daunting. What we hope is that people will turn to it for information when they reach a particular stage or problem."

The authors also hope it will be useful to grandparents, siblings, students planning to work in this field, and professionals.

It is so jargon-free and straightforward that anyone involved with children could benefit from reading their lucid explanations of child development, and the book leaps to life via the liberal sprinkling of frank anecdotes from six parents who tell their stories of rearing children with mild to severe learning difficulties.

"They have given us the painful bits, but also the more positive things as well," says Martin. "Carol is the most seriously disabled young adult in the book, but her mother calls her an angel and writes about how she's such a source of good feelings because her sweet nature brings out the best in everyone around her."

The Hollins's point out that a child's emotional life is more important than things like external milestones such as learning to read and write, and want to encourage parents to focus on their child's hopes and aspirations, however these might be fulfilled.

For example, says Martin, their son grew up dreaming of the glamour of Hollywood film-making. So when a drama group he is part of put on a show at the local arts centre it was no surprise to find that his part involved coming on stage to shout "Lights, camera, action!" "In a small kind of way," he says, "his dream came true."

But they know at first hand how many problems can beset parents in their position. "We often found it difficult to engage with the system, even though we work in health and education and know how it works," says Martin.

"So we couldn't help but think how much harder it must be for parents who don't know. We were often shocked by some of the attitudes we came across.

People saying, in effect, 'Let me be the expert. I know best', or 'This is how things are'."

When they were searching for a secondary school for their son, he says, the system felt "like a steamroller". Martin's advice to parents on dealing with the system is: "There's no point in being confrontational. Bite your tongue and try and find another way round it."

Sheila says: "When I'm teaching, I say to people, if you've got difficult parents step back and see what's making them difficult and see if you can find a way of helping them. Just dismissing them as difficult is not very professional."

This is a book full of practical wisdom from two parents who have learnt the hardest possible way about their subject. Now life has dealt them yet another painful lesson in having to focus on the positive under extremely difficult circumstances. Their daughter is Abigail Witchalls, the young Surrey mother who was paralysed after being stabbed last April while out walking with her toddler son. However, the safe arrival of her baby last month was, says Martin, "just wonderful".

You and Your Child: Making Sense of Learning Disabilities, by Sheila and Martin Hollins, (Karnac pound;8.99)

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