Parents' delight as US therapy provides breakthrough in three-year-old's condition - Why we're happy paying 17,000 a year to help treat our son's autism

EXCLUSIVE By Coreena Ford

Much better: James and Michele enjoy a cuddle, above. Inset is James's room, seen on a monitor, where he and his therapist work together.

LITTLE James races towards his mother, touches his nose to hers and smiles as their eyes meet.

It is a touching scene, but not an unusual one, you might think - until Michele Carr explains that such moments are priceless, for her three-year-old son is autistic.

James's condition has improved tenfold since he became one of three North-East children to take part in a US therapy programme called Lovaas.

Once unresponsive to his family and surroundings, James is now an affectionate and inquisitive child who relishes painting, playing with his Teletubby dolls and Postman Pat van and singing games at his nursery.

However, this dramatic turnaround has a cost - 17,000 a year.

Michele is a ward sister at Sunderland Royal Hospital and her husband David is a site agent for Barratt's.

They have a 14-year-old daughter Stephanie and two dogs and appear to lead a fairly affluent life in their detached home in Romney Close, Philadelphia, near Sunderland.

But the arrival of their autistic son has, says Michele, "put extraordinary demands on our spiritual, emotional, physical and financial resources".

She said: "When James was properly diagnosed when he was two years old I was devastated - it was like a bereavement.

"We felt like we had lost our typical little boy, because in our plans autism didn't come into the equation. My pregnancy was normal and happy and there were no signs that anything was wrong until he was 13 months old.

"There seemed to be a lack of understanding and receptive communication. By the time he was 18 months old the word autism kept popping up in my mind and he was referred to a community paediatrician who eventually diagnosed him.

"I decided to research everything there was to know about autism and everything we could do about it. At that point in time if someone said bobbing your head in cold water with cauliflowers helped, I would have been down the greengrocer's quick as anything.

"Thankfully, because of my work in the hospital, I knew the right people to speak to and the right questions to ask. We read about several therapies, including Teach, Sunrise, Options and Higashi, but eventually settled on Lovaas, because it had a proven track record and the others didn't have the research to back them up.

"David, Stephanie and I all had training from experts in Lovaas from the University of California and then appointed three therapists to come and see James every day.

"A crude way of summing up Lovaas is that we reinforce good behaviour and ignore bad behaviour.

"The 17,000 pays the weekly wages for therapists, monthly telephone calls to the doctors in America and visits from the Americans every three months to review James's progress. It is expensive, but it's not just because the majority if input comes from the States, it is also taken up by the weekly wages and paying for training.

"At the moment about 20pc of local education authorities fund treatments, but none of them are here in the North - that would be a way to make it cheaper and more accessible.

"If a child is diagnosed as being autistic in America, medical insurance companies pay for Lovaas treatment as a matter of course."

"Every morning James has a two- hour session with a therapist in the adapted bedroom. Shelves have been built so they are too high off the ground for him to reach his toys, so he must point or say the name of the object before he can have it.

"We give him instructions and break things down into simple steps, such as asking him to sit down, clap his hands, copy actions, come when he is called and so on.

"The improvements have been wonderful. Now he makes eye contact, has imaginative play times, knows many more nouns and is generally taking much more of an interest in his surroundings.

"It can get difficult to juggle the programme with a 30-hour working week, teenage daughter and two dogs, but we have never been disheartened by the Lovaas programme. He is doing so well that it has exceeded all my expectations.

"He actually runs up the stairs into the therapy room when he sees the therapist come up the drive in the morning and is genuinely happy to be there.

"He makes Postman Pat deliver letters, has tea parties with his Teletubbies and understands much more. He even goes to kindergarten every afternoon and loves the singing and action games and has umpteen girlfriends chasing after him.

"My real concern is for the future. We wanted our son to be the captain of Oxford University rugby team and still aim for that. One day we hope to get him into mainstream education. We will do whatever is best for James. He's an affectionate little sweetie."

This article first appeared in the The Journal Newspaper Online in October 1998.
© The Journal Newspaper Online 1998. Used by permission.

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