ADHD: fighting a misunderstood disorder

WHEN a child is diagnosed with Attention Deficit Hyperactivity Disorder, parents need somewhere to turn for help.Health and education editor Tracey Sparling discovers that many in Suffolk are struggling to cope as they wait too long for too littlesupport.

By Tracey Sparling

WHEN a child is diagnosed with Attention Deficit Hyperactivity Disorder, parents need somewhere to turn for help.

Health and education editor Tracey Sparling discovers that many in Suffolk are struggling to cope as they wait too long for too little support.

Parents are having to travel to Sussex to get expert help, but one support group here is trying to address the balance.

TIRED of fighting a system which doesn't respond was just one of many sentiments condemning the state of services for those affected by ADHD in Suffolk.

The words, ashamed, isolated and exhausted, were also uttered by parents at the end of their tether who were polled in a new survey about the condition.

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And the children struggling to cope said things like:

"It makes me feel mad.''

"Everybody hates me."

"I can't control my temper.''

"My life is horrible."

Yet despite such telling and disturbing words, expertise remains patchy across the country, and professionals disagree about treatments, so whether you get the best treatment or not can depend on where you live.

The postcode lottery means that Suffolk parents feel left out in the cold, claimed Linda Sheppard whose ten-year-old son Zaque, below, has the condition.

Just getting him up and out in the morning is a major trial lasting two hours.

Linda has to wake Zaque at 5.30am to leave for school at 7.30am.

"Half his breakfast ends up in the dog, the other half all over him," she said.

"I then walk him to the bathroom to brush his teeth or else he'd wander off somewhere else, and I put the toothpaste on the brush for him."

Practical problems are the tip of the iceberg, so Linda runs a helpline, website and the ADHD in Suffolk support group with 100 members.

Linda, 41, of Meadowlands, Kirton, dreams of building a support centre providing respite care and tuition about the condition, and there are already plans underway for a two-day conference at Portman Road. A feasibility study to find out exactly what help is needed in Suffolk is also planned.

The group aims to destroy the myths and ignorance which surround what is known as the hidden handicap.

Mother-of-six Vicky Thomson-Carr, of Kesgrave, said: "This condition tears families apart. I've known kids be shunted away as far as Devon to get help at a specialist centre."

Four of her children were born having genetically inherited ADHD, before it was diagnosed in William, now aged 14.

Associated disorders are common with Adhd and William also has bi-polar disorder, including manic depression.

Vicky, 44, carries the gene and there is a 90 per cent chance that if she has another child it will be the same.

She had to beg for money from her parents, to pay for her children's diagnoses – at £750 a time – at a learning assessment centre founded by Geoffrey Kewley in Horsham, West Sussex.

She only heard about the centre from a friend who read about it in a Sunday newspaper, and who sent her the cutting to ask: "Is this your son?''

Vicky said: "William matched every single symptom on a checklist of 14 ADHD criteria. He had already been excluded from schools 22 times.

"When I phoned the centre, I felt relieved. It was as if I had been searching for the Holy Grail. Everybody had been telling me it was the 'terrible two' and I had wanted to believe that but it was so much worse.

"Staff at the centre said I had not failed as a parent. This disorder makes adequate parents look inadequate.

"I walk round a supermarket and I can hear people tutting at the boys' behaviour. You get to have skin like a rhino, and have to issue instant rewards when the children behave well.

"Tara had to tell her college lecturers that ADHD was genetically inherited, after they tried to teach childcare students that it was a result of environment and parenting. If they are the experts teaching carers of the future, what hope is there?

"Parents can be overbearing but that's only because they always have to fight to get their kids the help they need."

Linda added: "If the parents don't shout, nobody else will."

If the condition goes undiagnosed into puberty, it often leads to crime.

Vicky said: "Teenagers get in to drugs, or inappropriate sexual behaviour, for example, and become damaged adults in a life of crime. The suicide rate is also very high. But it can be very different if you diagnose ADHD early."

There are many truly awful stories about ADHD, but people can make remarkable progress with treatment, and talent can shine through.

Vicky's ten-year-old son Ben was once pinned to the classroom floor by four teachers holding him down, was dangerous to other children, and kept running away.

But now he has been diagnosed and receives medication, he is doing well.

He probably has Asberger's Syndrome, too.

His spare time is spent at Newton Hall Equitation Centre where he rides his pony Cherie, learning jumping and dressage.

His brother Christopher, 12, is the family academic, who can solve a Rubik clock by getting all 18 faces to point to noon, in less than ten minutes. In ten years at the learning assessment centre, only five people managed that, and it might be a sign of autism. He also has Asberger's Syndrome.

Ritalin is often prescribed, but William now takes two tablets of the new wonder drug Concerta a day, which Vicky claims is not available in Suffolk or known to many, because it costs £380 per course, yet is licensed on the NHS.

He attends Kesgrave High School – which Vicky praises along with Cedarwood Primary School where Ben now studies – but only after she failed in a High Court bid to get him a statement of educational needs and had to pay for private treatment.

Similarly, Linda had to make strenuous efforts to give Zaque a place at an area support centre, via Chantry Junior School.

She said: "He was at home for eight months while this went on. But parents should not have to take the education authority to court to get the right help."

Vicky said: "We're not bashing the authorities. We want to improve the resources they have so other people don't have to suffer.

"Between ourselves we have got the skills to pass on, having lived with this condition for years. We have to ensure people at least get the right diagnosis, because early intervention is crucial.

"By the time William was diagnosed, the system had already damaged him. He'd been locked in a padded cell in a psychiatric hospital, which they called a cosy room, for 22 weeks. They said he just had a problem with anger management. He was nine. It was awful.

"Even now he is still frightened to be shut in anywhere."

If you can help sponsor the ADHD in Suffolk helpline, call 01394 448336.