28 04 2008

Heather Wardle case highlights difficulties in caring for a disabled child

28/04/2008

Telegraph.co.uk

http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2008/04/27/ndisabled127.xml

The story of Heather Wardle, the mother found hanged last week, highlights the sometimes intolerable pressures of caring for a disabled child. Here, Christopher Stevens, the father of a severely autistic boy, explains how one child’s disability changes the lives of a whole family.

It’s always the same question, saved for last: what will happen to your son in the future? Have you thought about that?

Our younger boy, David, will turn 12 next month without ever having learnt to communicate or to see danger. He is profoundly autistic, he is tireless and he is beautiful.

Autism isn’t a treatable illness and the causes are not known. All we know for sure about David’s future is that he’ll be autistic as long as he lives. During the round of TV and radio interviews this year to promote the book my wife Nicola and I had written about him, I would answer that final question deadpan. “David’s a gorgeous looker,” I told interviewers. “We’re hoping he’ll meet a Californian heiress who just wants him for arm candy and doesn’t care about his conversation.”

The truth is that David won’t grow up. He’ll get bigger, but in his mind he’ll always be a little boy, a six-foot toddler who won’t understand why he can’t squeeze into the Postman Pat ride outside Tesco. For his family, that’s an overwhelming prospect: we love our boys (we also have another son, who’s 14), and the responsibility of loving David is often exhausting. The thought that he will still be utterly dependent on us if we live to our eighties makes me proud and grateful and sick to the stomach, all at the same time.

Heather Wardle, who was found dead last week along with her 21-year-old son James Hughes, must have known all her adult life that her oldest child would never be able to live independently. (Friends believe that he died of natural causes, and that she was unable to cope; his body may have lain in a suitcase in her garden for months.) Heather was just 17 when he was born and, as it became clear that his profound learning difficulties extended to every area of his life, her own youth would have evaporated. James could not have understood that his mother was a separate human being with her own rights and needs; to him, a perpetual innocent, she was the source of everything that was important. Food, love, entertainment, care: all flowed from her like tears. She was his force of nature, his basic emotions.

Every new parent experiences this shocking revelation, that to our children we are like genies in their bottles, all-powerful but trapped. The first lesson most children learn is that Mummy and Daddy won’t grant all their wishes. Children such as James Hughes and my son David never really understand this. What they don’t understand frustrates and angers them, and that’s tough for everyone. Many of these children can’t express their violence in words or project it into sports or on to toys. So it comes out in violence, against themselves. To stop them from biting their hands or punching their eyes or head-butting concrete walls, we do anything we can to make their wishes come true. And first we have to guess what they’re wishing for.

David is lucky – he goes to a wonderful school in Bristol, called Briarwood, where his classmates are all at the extreme end of the autistic spectrum. His teachers are dedicated and experienced, and he loves his lessons. But he won’t always be able to go to school. As things stand, he can attend until he is 19 years old, in 2015. Nicola and I will be in our fifties. We have no idea how we will support him for the decades after that, or what will become of him if he outlives us.

My wife sometimes asks me, “Who’s going to love David when we’re dead?” And I can’t answer her, because the answer I do know is even crueller than the answer I don’t. I can’t tell Nicola that we’ll find the money to pay for lifelong nursing care, because it’s hard enough just paying the mortgage when you’re looking after such a demanding child. And I can’t say: “His big brother will have to do it.” What kind of legacy is that to leave your other child?

Tragically, it is not unknown for parents with severely disabled children in their late teens to kill the people they have devoted their lives to. Eight years ago, a mother on the Isle of Wight named Janquil Turnbull gave painkillers to her sons, Robert, 23, and Richard, 20, who were both severely disabled by cerebral palsy, and smothered them with pillows. Then she dialled 999 and sat on the stairs, sobbing, until the police arrived. Later, she pleaded guilty to manslaughter by reason of diminished responsibility and was sentenced to three years’ probation. For years Mrs Turnbull, who was 52, had pleaded with the authorities for more help and been brushed aside.

On Easter Monday in 2005, 67-year-old Wendolyn Markcrow drugged her son with sleeping tablets and killed him with a supermarket plastic bag. It was more than nine years since she had first written to her GP, warning that during his temper tantrums she frequently threatened to kill Patrick. Her son, 36 when he died, was autistic and had Down’s syndrome. Mrs Markcrow, who also admitted manslaughter, pleading diminished responsibility, was given a two-year suspended sentence. The judge, Mr Justice Gross, called this the “merciful course”.

He was wrong. It was too late for mercy, for Patrick and his family, or for Robert, Richard and their mother. The merciful course would have been to ensure the extreme needs of these young people were met by local authorities and health services. The merciful course would have been to make sure their ageing, exhausted mothers were not abandoned to cope alone. That image of a broken woman with a helpless adult child, cast out of society, is so primitive as to seem impossible in any civilised culture… let alone Britain… let alone today.

It happens, though. It had been happening in Redditch, where Heather Wardle lived, for years, but the people who should have prevented it didn’t care until it became a double tragedy. They care now, all right, wringing their hands and bleating that Miss Wardle should have asked for more help.

I know what it’s like to ask for their help. As it became clear how profoundly David needed us to keep him safe every minute of the day, Nicola sacrificed her career and I tried to work from home. Saturdays were the hardest – both boys were at home, and I had to be in London. We had no family living close enough to help out, and conventional childcare was out of the question: without warning, David could throw himself into a road to lick a manhole cover, or crash his head through a window pane, or climb out of a moving car. We needed experienced carers, and the only people we could ask were social services.

Our introduction to the Disabled Children’s Service in Bristol had been flesh-crawling. A woman had arrived at the clinic where David, who was two-and-a-half, was being assessed by a paediatrics team. She sat giving me sad, simpering smiles for 20 minutes. I thought she must be some other child’s ghoulish auntie until she introduced herself as “Mary” from social services.

I protested that we hadn’t applied for her help and didn’t want it, that David was well cared for, that we hadn’t caused his disability, that we resented Mary’s intrusion. “It’s routine,” she said. “David has special needs, so obviously a social worker has to be available.” We discovered that all severely disabled youngsters who required respite care in Bristol were treated as Children In Need: social workers filed our details on the same forms they used to assess abusive and neglectful parents. On any night of the year, we might be cradling our screaming child as he tried to hammer his head against the floor; across the city another child might be cowering while his drunken parents shouted and lashed out. To social services, the two families were no different.

But we had to turn to them for help when our Saturdays became unmanageable. All we wanted was for David to be taken out of the house for a few hours, to break up his day and give him some exercise. He wouldn’t go out of the door with Nicola, and he wouldn’t let her out of his sight. At first he was deeply mistrustful of the people who rang the doorbell at 3pm and tried to usher him into their cars, but gradually, over many months, he began to accept the outings, and then enjoy them, and then expect them.

At that point, the system broke down. Carers started turning up late, or not at all. Rotas were botched. David was furious, but at 3pm on a Saturday we could do nothing except leave desperate pleas on our social worker’s voicemail. Those wouldn’t be heard till Monday morning.

Autistic children need routine, because they can’t handle explanations. David was using songs for basic communication, to tell us when he was hungry or when he wanted to go for a ride in the car. We never worked out what song could convey that the care worker wouldn’t be turning up for the third Saturday in a row, because he’d somehow been sent a blank rota. Though we had no time or energy to spare, we wrote to protest, week after week, and finally filed an official complaint. That’s like trying to catch a train by standing on the tracks with your palms out. We were battered to nothingness.

The case was “investigated” by a head of department at the Disabled Children’s Service, the same person who would have been held culpable if our complaint had been upheld; he decided the conduct of social services had been exemplary. We kept protesting; he proposed taking the case to the next stage, a Kafkaesque ritual of all-day tribunals and shelves of paperwork. We gave up; he recorded that the complaint had been resolved to our full satisfaction.

In the end, David solved the problem, by refusing to go out of the house even when his carer did turn up. He clung to the bannisters and thrashed and shrieked, an ear-splitting noise that is audible 100 yards down the street even with all our doors and windows shut. He was taking control the only way possible for a boy who cannot talk. There have to be rules, unbending and unbreakable, in his life, and the new rule was: no outings on Saturdays.

It’s that kind of help that Heather Wardle was supposed to rely on. That would have taken the pressure off, apparently.

“My son’s problems aren’t the worst of it,” one mother told me. She has two grown-up children and a small boy with Down’s syndrome and autism. “It’s the endless stream of council people and health service people and education people, coming through my kitchen, drinking my tea, asking nosy questions about my health and my marriage. That’s what I can’t stand.”

She’s right, because we didn’t ask for our sons to be so profoundly disabled but they’re still our children and we love them; on the other hand, we didn’t ask to be dragged into the parallel universe of social workers. And it’s impossible to love them.

James Hughes’s father issued a heart-breaking statement on Friday, trying to explain how much he loved his son and how desperately he’d be missed. “[James] taught us that the strong should look after the weak and so much about what was important and what was not important in life?…?James retained the innocence of childhood and he was very, very precious.”

The strong can’t stay strong for ever. Nicola and I are lucky to have each other to lean on, and very lucky to have our two affectionate, fun-loving children, but we can’t bear this weight alone for ever. And we daren’t risk adding to our burden by asking for help.

Christopher Stevens will be talking about autism and his family at Borders, Bristol, on Tuesday at 7pm; A Real Boy, by Christopher and Nicola Stevens, is published by O’Mara Books (£6.99).

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22 05 2008
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