Daniel 'We locked Daniel in his room at night for his own safety'

Vivien Cooper lives in Kent, but her 13-year-old son, who has a rare disability, has to attend school in Lancashire. She is now setting up a school for him closer to home and tells JANE GREGORY her story wrenching

WHEN Daniel was born I knew immediately there was something wrong. He had breathing problems, a muted high-pitched cry, a small head, widely spaced eyes and unusual creases on his palms.

Doctors took a blood test, and when he was two weeks old, we found out that he had Cri du Chat Syndrome. A doctor told us: "It's a chromosome disorder like Down's, but with greater disabilities." He gave us a page from a medical textbook which suggested that we should abandon all hope. Daniel struggled to gain weight and barely slept. He never babbled or screamed, his only sound was the characteristic mewing that Cri du Chat babies make. When he was a year old, he started head-banging, smashing his head on the hardest surfaces he could find. The consultant just said: "Handicapped children do that, he'll grow out of it." Daniel began walking at two, and each milestone meant more danger for him. He had no fear and felt no pain. He was happy, but relentlessly hyperactive, sleeping only four hours a night. One of his favourite tricks was to climb into the toilet. When I found out that I was pregnant again with Sophie, I confided in a friend: "I don't know if I'll cope." She replied: "Of course you will, you always do." But I didn't want to spend my life coping. I wanted to enjoy life. Daniel started at a local school for children with severe learning difficulties, but still needed constant supervision. I'd be changing Sophie's nappy with one hand, and holding on to Daniel with the other. Going out as a family became increasingly tough. He had obsessions about anything from watering cans to toy parts. He would become inconsolable if he didn't have a particular object, and we'd have to go home to get it. We locked Daniel in his room at night for his own safety. His bedroom became necessarily spartan, because he'd pull his curtains down, eat the stuffing in his duvet and pillow, rip his wallpaper and bite the furniture. At school, we were told Daniel was unteachable because he couldn't sit still. We provided a special chair to restrain him, but he learnt to escape from it. His report read: "Daniel's immediate reaction, when he comes into contact with anything, is to bite, suck, chew and, if possible, swallow it." DANIEL was seven when his school admitted it could no longer meet his needs. I started looking for alternatives and chose Beech Tree, in Preston, Lancashire, because staff impressed my by saying: "Yes, we think we can change Daniel's behaviour." Staff at two other schools had said: "We think we can cope with him." The distance bothered me, but at home, his prospects would have been bleak. Parting with Daniel was wrenching. We are encouraged to phone and visit him whenever we wish, but because of the distance, once a month is all we can manage. His sisters Hannah, 12, and Sophie, seven, see him only in their school holidays. Beech Tree is owned by Scope, the cerebral palsy charity, and it offers short-term provision. The idea is to then place children is a less structured environment. I started thinking about Daniel's future education. We wanted the Beech Tree approach in a school closer to home - but found out that nowhere was suitable for his needs. Then my husband Steve suggested that we should set one up, so I am now starting up a school for three children. I set up the Challenging Behaviour Foundation in February 1997, to act as an information service for parents and raise funds for the school. We hope that we will have it up and running by the year 2,000. For us to have Daniel nearby will mean we can pop in and see him whenever we want. On a sunny day I can say, let's collect Daniel and go for a picnic. We can regain some semblance of family life. THE FACTS ABOUT CRI DU CHAT * Cri du Chat is a rare chromosome abnormality diagnosable by blood tests. It is not usually hereditary, but in 15 per cent of cases it can be traced to the mother or father (even thought they are not affected). * The Cri du Chat Syndrome Support Group knows of 160 people in Britain with the condition. Every year, 10-15 new cases are referred. * Most babies have small heads, widely spaced eyes, and feeding problems. The most striking feature is the high-pitched cry which is often compared to the mewing of a cat. This is due to abnormal development of the larynx, which means that even as an adult, many sufferers will have high-pitched voices. * Children's development is usually delayed. Many sufferers have communication problems and use sign language. * Most Cri du Chat children require occupational therapy and physiotherapy to help with co-ordination and walking. * Many children, frustrated by their inability to communicate, become hyperactive, destructive and resort to head-banging to gain attention. * There is no cure, only effective management of the condition, which does not affect lifespan. * Write to Vivien Cooper at the Challenging Behaviour Foundation, 32 Twydall Lane, Gillingham, Kent ME8 6HX. Tel/fax: 01634 302207. The Cri du Chat Syndrome Support Group can be contacted at 7 Penny Lane, Barwell, Leicester LE9 8HJ. Tel/fax: 01455 841680.

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