The lives behind the labels

Sarah Strickland looks at common learning difficulties that affect children of all abilities
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The Independent Online
Until some 20 years ago, children with learning difficulties were often labelled "backward", "retarded" and "educationally sub-normal", in need of "remedial" help. Now psychologists have an array of complex syndromes at their fingertips that mean little to the uninitiated. All affect children of all abilities. Of the four featured here, dyslexia is probably the only household name. Even now, controversy rages over whether or not it exists: unbelievers see it as an excuse used by middle- class parents whose children have difficulty with reading and writing. lt is hardly surprising, therefore, that the others are subject to similar criticism: that they are simply clever words for the parents of naughty, clumsy, disruptive children to hide behind. Whatever the label, with specialist help early on, many sufferers can go on to take exams and pursue careers.

We noticed very early on that something wasn't right

Dyspraxia (from the Greek, meaning "abnormal doing")

Children with dyspraxia have great difficulty controlling and co-ordinating their movements, so they often appear clumsy and may also have speech problems. The causes of the disorder remain a mystery, although it is known that there are no visible changes in the brain. The regions of the brain responsible for conscious movement are thought to fail to develop at the usual rate, remaining immature.

Some of the most common signs include: poor posture and spindly arms and legs; lack of co-ordination (for example, when speaking, breathing, eating, dressing or playing games), slow responses, forgetfulness, difficulty in writing and copying: poor processing of verbal information and poor written expression. Help from a range of professionals including physio, speech and occupational therapists may be needed.

Denise Brown and Tom, 8.

"We noticed very early on that something wasn't right - I think it was when Tom didn't smile. He missed every milestone: he sat and stood late, he never crawled and he only started walking at 20 months.

"We were fobbed off until he was three with assurances that he would 'catch up'and I was told not to be such a clingy mother. By then he only had a handful of words when he should have been making small sentences. Sucking, blowing, chewing and drinking were all problems. He finally had a development check and they found that although his social and verbal comprehension were almost normal, he had gross motor delay. He went on to have speech and occupational therapy.

"When he went to nursery school it really began to hit home that he wasn't going to do what other children did. We felt he couldn't cope in a mainstream class of more than 30 so he went to a school for children with moderate learning difficulties, but even then we felt he wasn't receiving the sort of input he needed. So we've finally agreed to a place as a weekly boarder.

"He's still clumsy and messy: he eats like a two-year-old and it's only in the last year that he's really started running (a very ungainly, immature sort of run). He's very accident-prone and can trip up over nothing. If other children are around, he gets frightened because he's using all his concentration to keep his balance and one knock is enough to throw him completely. He finds it easier to make friends with younger or older children, or children with similar difficulties.

"He still has problems articulating and sometimes it's quite hard to understand him. He has great difficulty organising and expressing his thoughts and writing is a real struggle. It's been quite hard to accept that he'll never do the sort of things that we did, like go to university, but we are confident that he will have an independent life and be able to make a living and we are hopeful of a lot of improvement."

For further information send an A4 sae to the Dyspraxia Trust, PO Box 30, Hitchin, Hertfordshire, SC5 1UU.

His grasp of basic Anglo-Saxon was unbelievable

Attention Deficit (hyperactivity) Disorder (ADD or ADHD)

Impulsive behavour, overactivity and an inability to maintain attention are the main symptoms of this disorder. Children find it hard to think before speaking or acting, to use appropriate levels of physical activity and to act on what they have been told. Their achievements are uneven, they seem messy, disorganised and forgetful, respond without thinking and are easily distracted. They often have few friends because their behaviour is disruptive, they may have tantrums and have little awareness of their effect on others. Some are withdrawn and non-communicative.

Scientific evidence suggests the disorder is genetically transmitted and is caused by an imbalance of chemicals in the brain. Some believe environment and diet can be contributory factors, although there is little evidence for that.

The condition has been recognised for years in Australia and the US, where the use of drugs is common. Ritalin, a stimulant, is now used here, and parents have reported excellent results, with happier, more focused children. Critics question the long-term administration of drugs to children.

Brian Tuffill and Justin, 8

"We adopted Justin from our daughter because she just couldn't cope with him.

"Looking back now, our own kids were extremely obstreperous and we wondered if it was normal. With Justin, it was as though all the lights were out and he'd gone on holiday somewhere. At three, he was only sleeping two and a half hours a day, the rest of the time he was wrecking the place. Even my wife, a psychiatric nurse, didn't know what was wrong so we started looking for help, which took us three years. By then he was under threat of exclusion and our marriage was nearly in ruins.

"He was quite violent, aggressive and noisy and would bring everything in the class to a grinding halt several times a day. He'd be extremely quiet and suddenly go mad. Once he took off, anybody or anything in his way would be turned over, so anything breakable or sharp had to be removed. The only thing he didn't manage to push out of his bedroom window was the bedframe. He was very dyslexic and backward in his speech too, but his grasp of basic Anglo-Saxon was unbelievable!

"He started the medicine when he was six and now you can see there was a good, bright kid locked up inside. He's not a problem at school now and he's picking things up quickly and building friendships. ADD children aren't just naughty, they are off at a tangent, their behaviour is bizarre, inconsistent and anti-social. When he came out of his bouts of aggression, he was absolutely distraught about what he'd done. Now he knows the difference between responsible and irresponsible behaviour. He knows when he is naughty and understands that he'll be told off. But the medicine shouldn't be seen as a cure-all; it is simply redressing a chemical imbalance."

ADD/ADHD Family Support Group, 1A High Street, Dilton Marsh, Westbury, Wiltshire BA13 4DL, 01373 826 045.

He'll always need to carry a spell-checker in his pocket

Dysphasia (from the Greek, meaning "abnormal speaking")

Once used to describe deviant speech caused by brain trauma (through, for example, a head injury, stroke or meningitis), dysphasia is now a general term for specific speech and language impairments. They may be acquired through trauma or be present from birth and may affect a child's ability to understand and/or produce speech. Most dysphasic children start life with "aphasia" - having no speech at all. The condition may encompass other disorders such as dyslexia and dyspraxia, Some dysphasic children benefit from learning a sign language.

Anne Keatley-Clarke and Luke, 11

"We realised Luke was having speech difficulties when he was two and not speaking at all. By the time he was three, he was having speech therapy but the problem wasn't diagnosed till he was four. At five, those outside his immediate family still couldn't understand him but by the time he was nine most of his articulation problems had gone.

"I naively believed that everything was going to be OK then, but underlying problems began to surface: he was having trouble putting words in the right order and using them effectively in sentences, and his difficulty with language was making it hard for him to read and write, too.

"He wouldn't always get jokes and had difficulty understanding terms like 'pull your socks up', he'd take them very literally. His mind works very visually, so he will call stamps "stickers" and a wristwatch an "armclock". The other day he was talking about someone being buried in terms of being "dug under'. He was always last to be picked for a team: once he got confused about which direction he was going in on the football pitch and scored an own goal. He can't tie his shoes and he has to use his hands to work out left and right. But he can memorise directions extremely well. I always turn left or right in the car when he says, even if I feel it's wrong.

"At the moment he's at a school for children who are severely dyslexic because his problems straddle the range of language difficulties. He also has oral dyspraxia: when he was small he had difficulty drinking through straws and he had to be taught to blow and swallow. Even now in moments of excitement he can get quite dribbly. If Luke hadn't had help early on, his speech problems wouldn't have gone away and he'd have had trouble articulating for the rest of his life. It's vital to identify children early.

"Luke's problems will never be cured but he has been taught strategies to overcome his difficulties. He'll always need to carry a spell-checker in his pocket, but I think he will cope very well indeed and be able to hold down a job, particularly if he can get secretarial support! He'll have to have extra time during his GCSEs because it takes him so long to read and write."

AFASIC, 347 Central Markets, Smithfield, London ECIA 9NH, 0171-236 3632.

She scrambles words, so she'll say later instead of tailor

Dyslexia (from the Greek, meaning "abnormal reading")

Dyslexics have difficulty with reading, writing, spelling and/or numeracy. They may also have problems with co-ordination, organisation, orientation, memory and concentration. Typically, they confuse left and right, east and west, first and last; read choppily with long pauses, reversing, repeating or omitting words and letters; fail to recognise familiar words or remember written instructions and write erratically, with spelling reflecting their speech errors. Dyslexia is thought to be hereditary and boys tend to be more severely affected than girls. Recent research has shown anatomical differences in the brains of dyslexics.

Sue Palmer

"I had a terribly long labour, which can be one of the causes of dyslexia. Another sign was that Beth was slow to talk and we noticed she wasn't picking up nursery rhymes. She'd say: 'Humpty Dumpty sat on the wall, Humpty Dumpty fell off,' she wasn't hearing the rhyme. She'd had some intermittent hearing loss, and when I was testing her to see which sounds she wasn't picking up she repeated 'cat' and 'dog' after me, but when I said 'small' she kept saying 'little', she didn't know there was a difference. She was only reacting to the meaning.

"Beth confuses left and right, often gets words mixed up and writes letters and words back to front. Sometimes when she's reading, the words disappear, they just seem to get swallowed up, or they scramble so she'll say 'later' instead of 'tailor'. She finds concepts like time and days of the week difficult and has severe problems with maths. There's no point trying to teach her her times tables because it's all gone in two days. It takes her a long time to learn new words. She's at a private school because she needs the individual attention you can't get in classes of more than 30. I've worked with dyslexic children for years and sometimes I teach Beth in the morning before school."

Beth, 9

"When I'm a bit stressed out, I think my friends are at the top of the hill and I'm at the bottom. I feel like I'm the baby of the class. It's only about reading, writing and maths that I get really angry, I've picked up dance and drawing. When I try and read, there are lines going all over the place; I've got some special glasses to help. Sometimes I know the word and what it means but I just can't get it out and I think 'what's the matter with me?' and cry. When I get into writing stories and poems I really like it but I can't write answers to questions.

"Sometimes I'll say the answers and people will write them for me. But sometimes I feel like trying and my friends ruin it by doing it for me!"

British Dyslexia Association, 98 London Road, Reading RG1 5AU, 01734 668271.

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