Coping with disability can put an almost unbearable strain on a family. Nick Morrison looks at a project which aims to give the parents of disabled children a break

FOR most of the six years the routine was the same. On Sunday mornings Susan would arrive at 10am and they would make a chocolate cake, followed by scones. Then Mark Owen would go into the yard to water the plants.

After lunch, Susan would drive to St Mary's lighthouse at Whitley Bay. When they got there, Mark Owen would get out of the car and put his hands over his eyes. After a few seconds, he would take his hands down, run across the causeway and kiss the lighthouse. Then they would go to Marshalls in Tynemouth for fish and chips, and as they waited in the queue, Mr Marshall would give Mark Owen a wooden fork with three chips on it. After finishing their fish and chips, they would take a leisurely drive back, dropping Mark Owen home at around 7pm.

Susan discovered the consequences of departing from the routine pretty early on.

"Autistic children don't always recognise you from your face, they recognise you by your clothes, so I had to wear the same clothes every time I saw him. If I didn't, he would become agitated and turn away and cover his eyes.

"Then he would go through my cupboards and take out the top he knew me in. As soon as I put those clothes on, he would look at me. For two years I had to wear the same jeans and T-shirt," she says.

"We would pretty much keep to the same routine every time. If you tried to do something different, that was when you would encounter problems. He would become aggressive, violent, he would maybe bite and kick. A lay person would probably think it was a tantrum, but it wasn't, it was because he was anxious. Autistic children like their routine, and if you go out of their routine they become anxious."

For six years Susan Laing helped look after Mark Owen Young, giving Mark Owen's mother Helen a break from the constant attention autistic children demand.

At the start, Mark Owen would go to Susan's home in Consett, but when he became agitated at this break from his routine, she started visiting him at his home in nearby Blackhill. On one occasion, she stayed over so Helen could go out for the night, but Mark Owen had perhaps his most violent outburst Susan saw in those six years. As a result of that, they settled on the Sunday cake-lighthouse-fish and chips routine.

Like most autistic children, Mark Owen found it difficult to cope with variations on his routine. Where Mark Owen differed from many others was in the extent of his reaction.

It was perhaps the fear of where her son's violence would end that led Helen to take both their lives 16 months ago. After giving him a large dose of sedatives, and taking an overdose of paracetamol herself, Helen cut both their wrists, before driving to Hownsgill Viaduct, where she took her son in her arms and jumped. Mr Marshall from the fish and chip shop was among the mourners at the funeral.

Susan became involved with Mark Owen through the Shared Care scheme run by Barnardo's in the North-East, which aims to help families of children who have a physical or learning disability, through taking the young person away for a day or a weekend, looking after them in their own home, or providing befrienders to get them involved in leisure activities. Shared Care works with about 20 children in the region, but now has a ten-strong waiting list.

'It is about giving the parents a break, so they can get on and recharge their batteries and spend some time with other children in the family," says Shared Care's Judith Latheron. "But there are quite a few we're not providing a service for, because we haven't got the carers."

Susan had been a deputy manager in a Barnardo's shop when she decided to volunteer for the scheme, partly in gratitude at the help she got from the Barnardo's nursery when she was a single parent, enabling her to go to college.

She admits she knew virtually nothing about autism when she started looking after Mark Owen, who was six at the time, and at first found it difficult to deal with a boy who was at the extreme end of the autistic spectrum, with his unpredictable behaviour and violent outbursts.

"Your attention has to be focussed on them all the time - you cannot leave them in a room to look after themselves," she says. "You can sit and do a jigsaw with them, but all the time your attention is on them. If you're making lunch or a sandwich you have to know where the child is. They do tend to take over your house."

And Judith acknowledges that getting carers to look after autistic children is particularly difficult. "Having an autistic child can have a huge impact on the rest of the family, because the parents aren't able to spend as much time with their other children," she says.

"You have got to have a tremendous amount of patience, that is why it is so important to try and get carers. Susan offered a tremendous service to Mark Owen and his mum."

Although her time was spent with Mark Owen, Susan has no doubt over who was benefiting from the help she was able to offer.

"It is not the children you are helping - because the child is probably quite happy to be at home all the time - it is the parents you are helping really," she says. "You are giving them a break. I don't think it would have bothered Mark Owen if he never saw me again. They don't miss you, but when they're with you, they're happy to be with you."

Despite this, it is clear that an extraordinary bond was forged during the years that Susan knew Mark Owen and Helen.

"I used to take my hat off to Helen; I used to think how hard it was for parents looking after children like this to function," she says. "I did it because I cared, because I loved him and felt such an affection for Helen and Mark Owen. This is why you do things: because you care.

"Mark Owen was very loving. People say autistic children don't have any affection, but he would give you cuddles. He was one of the most affectionate children I have ever known."

Susan is now looking after a girl with cerebral palsy, but feels the knowledge of autism she gained in the six years with Mark Owen can be put to good use with another family, although perhaps not quite yet.

"I just need a little bit of time. Autistic children are so much the same, it reminds you so much. They have got the same mannerisms, the same way of going on, that it is quite upsetting.

"But it is the relationship you build with them, you like being with them. It was nice to go to Whitley Bay, to the lighthouse. Mark Owen was happy 99 per cent of the time, it was just that other one per cent. I just thought he would always be in my life."

* Barnardo's Shared Care North-East can be contacted on 0191-3784800