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 Panorama
Living with a disabled child
The Myerson family
Family life is not easy for the Myersons

It is quarter to four in the afternoon and Barbara's explaining what will happen when her daughter Aja comes home from school.

"I love her to bits, but I dread it. She wrecks the house. Going to the loo is a nightmare because she sits on my lap. She throws stuff. And she follows me everywhere.

"I can't move. I'm trying to cook and I step back and she's there. She lies on me, she dribbles on me."

The school bus arrives. An arm waves and Aja comes slowly, lopsidedly, down the steps, smiles broadly and greets her mother with a single word: "Bastard."

Cerebral palsy

Barbara Riley
Her fits last from a few seconds to an hour and a half

Barbara Riley

Barbara frogmarches her into the house, shuts the front door, locks it and puts the key in her pocket.

Aja is 11. She has cerebral palsy, epilepsy, severe learning difficulties, developmental delay and she is hyperactive.

Barbara has looked after her almost single-handedly for the past nine years, since her husband went back to the USA, unable to accept his daughter was not "perfect".

Barbara calls her "my angel".

The angel heads for the kitchen and grabs a knife. Barbara grabs it back. While Barbara is cooking dinner, Aja has a fit. Her fingers twitch, her eyes roll and she starts to shake and moan.

Hope

Aja's fits last "anything from a few seconds to an hour and a half," her mother says, gently stroking her head. They happen at least once every day.

Until recently, Barbara shared a bed with Aja, and she still fears Aja will wake in the night and start wandering around.

There are no lights in the bedroom - Aja's hobbies include removing light bulbs.

Barbara cannot remember when she last had a night off. She asked Oxfordshire Social Services for help more than a year ago, but she is still waiting for the eight hours a month respite care she was promised.

"It's a waste of time if you're assessed and told you can have these services and then nothing happens," she says. "Don't give a parent that hope."

Twenty miles away, Aja's classmate Emmy is having her supper - puréed toad-in-the-hole. She starts to choke.

Her mother, Tussie, puts a tube in her mouth to clear the mucus. Emmy coughs. The toad-in-the-hole reappears.

Worst scenario

Tussie Myerson
It's a waste of time if you're assessed and told you can have these services and then nothing happens

Tussie Myerson
"I only stopped having expectations maybe two years ago," Tussie says, "before that, I won't say I hoped for a miracle, but when you have a baby you anticipate development, and that's never happened." There is a bit of you that feels cheated.

Periodically, you do think, life would be so much easier without her, she admits.

Tussie and her husband David have two other children, who they believe suffer because of the time they have to devote to Emmy, who has extensive brain damage, is totally dependent and was never expected to survive her first birthday.

"I've spent the past 11 years expecting her to die and now I'm facing the prospect she could keep going for a long time. That's the scariest and worst scenario I could imagine," says Tussie.

"But what you also can't anticipate is how rich life is for having lived with her."

No structure

Last summer, Tussie and David told Oxfordshire Social Services they could no longer cope.

They would like her to go to a residential school six miles away, but it costs £130,000 a year and they are arguing with the council about who, if anyone, will foot the bill.

Like many social services departments, Oxfordshire's is overspent. Too little cash, too many people needing help, too few carers to support exhausted parents.

There are more than 100,000 severely disabled children growing up in Britain today. Modern medicine keeps them alive, and many are at home rather than in institutions.

This both tests parental love to its limits, and poses an economic and moral dilemma - how far should the state contribute to the cost of their care?

"There's no structure to support families like ours," says Tussie, "It's a bit like being thrown into a war zone."

Panorama: Survivors will be shown on Sunday, 26 January 2003 at 2215GMT on BBC One.

This article was originally published in the Radio Times

Panorama asks why the families of disabled children appear to have been forgotten


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