When two plus two equals April
In Imogen Stubbs' ideal world, schools would nurture, celebrate, inspire and teach dyslexic children, like her son.
"when I do riting and pariigrafs my brayn is uncunferdbl and herts and i get the writ word but wen it travls down my arm it disapeeurs befour it coms out of my hand and sumtymes im chrying."
This is a child who draws with an astonishing sense of colour, is always joyous and clowning and tender, and incredibly sensitive to other people's moods and feelings. He adores babies and animals. He can spend hours chatting to an old fisherman or helping the gardener or whittling a piece of wood. He loves moving his body, hurling himself around on a skateboard. He adores kite-flying and building things and kayaking and cooking.
However, he still has trouble remembering my brother's name. And only two years ago, when asked what you got when you added two plus two, he replied: "April?"
It is as though his thoughts are lost in translation as they move from pictures to words.
For many dyslexic children, the experience of reading and writing is like driving in a foreign country - everything seems to be on the wrong side, going in the wrong direction. Everyone seems to be travelling faster than you. It requires exhausting concentration - and you experience a sense of tension, fear and total isolation as everyone roars past, hooting and looking at you as if you're an idiot. When you finally reach your destination, after many wrong turns and a circuitous route that has taken an insanely long time, you then have no desire ever to get behind the wheel again. Meanwhile, your hosts have gone off to a party without you.
And yet. And yet. You could excel behind the wheel, if only you were on familiar roads.
Dyslexia is not a disease and it has nothing to do with a lack of intelligence. It is a neurologically based, often familial disorder that interferes with the acquisition and processing of language.
One in 10 children has some form of dyslexia. Of course, there is no such thing as a standard dyslexic but there do seem to be common characteristics: astonishing artistic and mechanical gifts and the potential for intuitive, highly creative, multi-dimensional thought processes. There can, however, be erratic access to logic, maths and word skills. Frequently, there are short-term memory and concentration problems, slower thought-processing speeds and the kind of non-linear thinking patterns that British comedian Eddie Izzard, himself dyslexic, has turned into a virtue.
The biggest problem seems to be that the large-classed, exam-oriented school system is catastrophic for most dyslexic children. It does not and cannot play to their strengths. To learn differently, you have to be taught differently. Yet mainstream teachers have neither the time, resources nor training to help children outside the norm, and both are judged by exam results.
For such children, there is one overwhelming lesson they learn from their school days: if you are down on the floor yet again, either literally or metaphorically, there is a great attraction in staying down because you are not exposed to the terror and humiliation of falling down again.
Is it any surprise that 70 per cent of people in prison have learning difficulties? How much cheaper and more humane to be there at the beginning, ready to catch them if they fall. Even a child who thinks two plus two equals April could work that out.
I am writing this article not because I have the answers but because I am exploding with questions fuelled by anguish, incomprehension, anger and a passionate belief that all children - every single one - deserve an education from which they will emerge liking themselves.
In most schools, it is a case of all children are equal but some children are more equal than others. So what do we do as parents? How do we help our son survive intact in school and yet retain his uniqueness? How can we ensure that we find the right path before he becomes withdrawn and frightened and wears his glorious hat of many colours like a dunce's cap?
Or should we just say: "This is how this wonderful, luminous child is", and let be? We have no idea what to do. It seems overwhelmingly clear that our son's life should not be judged by exams - but do exam-free schools exist?
In my heart, I want to keep my son at home and protect him and home-educate him. his, to me, means encouraging him to make impressionist paintings and pottery, going to films and plays, gardening and singing, making up stories, trying out instruments, building a sailing-boat, and taking him on camel rides across Rajasthan.
I want to fill him up with challenges that will inspire and exhilarate him,
rather than abandon him to "get through" the experience of school, where every book and lesson is a different form of reproach.
But, of course, my idyllic notion is probably naive. What about team sports and a social life? What strains does home education put on the rest of the family? Would he still have to study for the same exams?
He is in a lovely school that does its utmost to provide extra help for a few sessions a week. But, even so, he has started to come home saying that he's got a "wonky" mind; that children say "Hello durr-brain, are you receiving me?"; that he'll never ever be able to spell February.
He beams with pride when he receives certificates of merit. But in big school you don't get them for being a good clearer-upper or kind to little ones in the playground. Being the goofy kid who plays the fool can suddenly become being the fool.
Anchoring his concentration is like tethering a kite on a windy day or stalking a kangaroo. It feels as though it's against nature. But you also need vigilance against laziness: dyslexia can easily become an excuse for perpetual chilling-out or an unwillingness to have a go.
Many children develop illnesses in order to avoid school and potential humiliation. I'm sure we are not the only parents who have subjected their child to an MRI scan because of mystery aches and pains.
My great fear is that as he gets older, our son will stop sharing his hurt with us, that he will push it deep down and cover it over. I know pubescence is a tricky time for boys; they fend off most questions with a shrug and "dunno" or "whatever" or "fine". It will become much harder to assess whether "fine" actually means "Please help me, I'm lost and frightened and I have no idea what anyone's talking about."
And then, as his self-esteem disintegrates, I'll no longer get a sunshine smile, brimful of the bliss of my unequivocal approval. Instead, I'll witness a defensive retreat into misplaced clowning, bitterness and cynicism. "Yeah, sure, I'm your unique, wonderful boy. How? Give me one example of something I shine at? . . . Exactly."
If we get his education wrong, then the shimmering of his personality will disappear with the harm of the years.
I have to confess that until I had children, I was never too interested in dyslexia. I thought it was something that could be solved with spell-check and a calculator.
Dyslexia is not an arresting word. It does not begin to speak of the all-encompassing nature of the condition or anything like the colours of its palette and the complexity of its woes and joys.
In many ways, we are lucky. Our son was diagnosed with dyslexia relatively early on, when it was clear he had problems with his retentive memory, probably not helped by the fact that I had initially sent him to a French school. That said, he has a truly refined appreciation of boyish women who smoke and read Tintin.
At his small private school, he is provided with between one and two hours of specialist help in maths and literacy, along with other children who have the same, yet inevitably different, "learning differences". With the best will in the world, it is clear that the specialist teachers have far more work than they can really accommodate.
What else have we done? We have leapt on every bandwagon going. We have chucked fish oils down his gullet; we have had him focusing on light-beams in dark rooms; we have encouraged him to walk backwards down a line, counting plastic frogs; we have watched him balancing on boards while catching bean-bags, occasionally between his teeth. It all merges into a slightly lunatic blur.
Maybe some things help, but then maybe so does changing the breakfast cereal. It is so hard to tell what is real improvement and what is part of natural development or simply your desperation to believe. Yet every new "solution" demands an expensive and time-consuming commitment.
It is a growth industry. There are more and more impressionable people out there desperate for a miracle "cure" for dyslexia. But dyslexia does not need a cure. It needs to be diagnosed early so that appropriate help can be provided immediately. Then life-long learning needs to be backed up by life-long support and motivation. In an ideal world.
Inevitably, though, many parents are told that their children can "get by" in mainstream education. I doubt whether the word "flourish" has ever been used in this context. It involves "inclusion" or extra help within mainstream schools. Inclusion is a lovely ideal. But what are severely dyslexic children being included in? The child may be physically present and notionally part of the class. But whether he is included in the experience of success is another matter. He is not discriminated against but, ironically, this worthy policy may not always be appropriate.
The problem is that inclusion can easily become exclusion unless it involves academic segregation, with the whole peer group mixing only for non-academic activities. Inclusion also requires the child's classmates to demonstrate immense generosity, tolerance and goodwill.
But surely I am not the only parent who feels that my child needs a completely reinvented curriculum? Academic qualifications are not the only valid achievement. Crafts and skills and apprenticeships look wonderful from where I am at the moment.
According to Alex Tait, a charismatic specialist teacher whom I'd happily kidnap, and Patience Thompson, an authority on spLD, specific learning difficulty (a form of dyslexia), children with specific learning difficulty require a multisensory approach, rather than one that is word-based and linear. You need to reinvent the wheel, so to speak, every lesson.
Children need to be taught in a way that is both dynamic and unexpected, while at the same time they should be incredibly well-informed about the timetable. Otherwise, there is constant fear that humiliations are about to burst upon them around the corner.
Equally, problems must not be treated with unquestioning acceptance. The school must see the potential that the child may not want to let them see because the prospect of going after something and then failing is too scary.
In other words, school needs to address the emotional, intellectual and social development of the children in a safe environment, away from mockery. Teaching should not be focused so much on exam results as on instilling self-belief.
That there are "special needs" co-ordinators in most schools now is a tremendous advance, yet often they are dealing with a mish-mash of problems. Two sessions a week is well-intentioned but a severely dyslexic child needs all lessons to be recalibrated in order to make the academic side of school accessible.
I suppose that my ideal is a combination of orthodox and unorthodox. Children clearly need literacy and core basics, such as maths, to be able to cope in society. But then they should be allowed to go off-piste in order to discover and develop non-academic skills that could become the foundation of their future careers. Then children could emerge from their school days not feeling damaged but possessed of strengths that genuinely define their difference and uniqueness in a positive way.
Many clever and pioneering people owe some of their talent, skill and fame to being different, not in spite of it. Famous dyslexics include Tom Cruise, Robin Williams, Agatha Christie, John Lennon, Nigel Kennedy, J. F. Kennedy and W. B. Yeats.
Sometimes I feel that there is something immensely precious and enviable about the way my son seems to perceive the world. I look at a tree, and a noisy internal commentary keeps any sensory experience at arm's length. Something is lost in translation. (As Tom Stoppard points out: "The names for things don't come first - words stagger after, hopelessly trying to become the sensation.") My son responds in a much more instinctive and emotional way: he senses the brown-greenness against the blue, the nice-smellingness of the pine-needles, the roughness of the bark.
There is a real beauty and value in responding to the essence of something in its pure state. Hopkins called this the "inscape", the unified complex of characteristics that gives each thing its uniqueness and that differentiates it from other things:
Each mortal thing does one thing and the same:
. . . myself it speaks and spells, Crying 'What I do is me: for that I came'. (G. M. Hopkins)
Whatever happens, we must fight to retain every child's inscape intact.
"somtiyms i get the best good ideya in my head and its like Miss Wakins Me Me ME! but wen she sez yes its gon like a rabit down a hoel not even the litle nose peking -jus dark mistry."
- Telegraph
By Imogen Stubbs, The Age
http://www.theage.com.au/news/education-news/when-two-plus-two-equals-
april/2005/07/22/1121539155781.html?oneclick=true>
The ABCs of Stuttering: New DVD for Parents and Teachers
Give your child’s teacher a copy on the first day of school
- Should I call on the student in class, or will that only make it worse?
- How should I handle teasing and bullying by other students?
- What should I do about reading aloud in class?
The Stuttering Foundation is making Stuttering: Straight Talk for Teachers available on DVD just in time for the back-to-school season. This 20-minute DVD helps parents and teachers understand how stuttering can affect children of all ages in the classroom.
The highlight of the DVD is the children who discuss their experiences in the classroom and share what was helpful for them.
“Even when I knew the answer, I wouldn’t raise my hand because I was worried about what others might think,” says Umberto, a teenager in the video. He added that giving a classroom presentation on stuttering to the entire class has made him feel more at ease.
“At the beginning of the school year, I was embarrassed to read aloud in front of my teacher and friends because of my stuttering,” says Kate. She worked with her teacher to make a plan about how she could practice first at home and then individually with her teacher.
Martin offers a different perspective. “I feel confident and even though I might mess up when I talk, I’m not ashamed. I still want the teacher to call on me even though I might be having a bad day.”
Noted speech-language pathologists Bill Murphy, M.A., of Purdue University and Kristin Chmela, M.A., of Northwestern University present practical strategies teachers can use immediately to help children feel more comfortable talking in the classroom.
“The courage and honesty of the children sharing their experiences helps teachers find solutions for the children in their class,” says Lisa Scott, Ph.D., of Florida State University and co-producer of the DVD.
At school, children who stutter often face bullying and teasing. This treatment by other students sometimes causes more anxiety than does the speech disorder itself.
“Even the children who receive therapy to help them speak more fluently continue to have negative feelings as they grow older,” Murphy says. “Their ability to communicate is still hindered by the shame and embarrassment they feel about stuttering, which is often brought on by teasing.”
Murphy suggests teachers make stuttering an open topic for discussion in the classroom. One exercise a teacher can use is to discuss famous people who stutter.
NBA basketball star Kenyon Martin, news anchor John Stossel, and actors James Earl Jones and Nicholas Brendon are just a few of the many celebrities who struggle with stuttering. A list of famous people who stutter and a downloadable poster can be found at www.stutteringhelp.org.
Elementary school teacher Katie Lenell says, “This DVD is an excellent resource for educators at all grade levels. I now feel more at ease having a child who stutters in my classroom.”
The DVD, which is offered free to all public libraries, comes with a 42-page handbook of additional information and resources. A videotape version is also available. For more information, contact the Stuttering Foundation at 1-800-992-9392 or online at www.stutteringhelp.org or www.tartamudez.org (Spanish).
Tips for talking with a child who stutters
2. Speak with the child in an unhurried way, pausing frequently. Wait a few seconds after the child finishes speaking before you begin to speak. This slows down the overall pace of conversation.
3. Use your facial expressions, eye contact, and other body language to convey to the child that you are listening to the content of her message and not how she is talking.
4. Don’t complete words for the child or talk for him.
5. Don’t make stuttering something to be ashamed of. Talk about stuttering just like any other matter.
ArriveNet
http://press.arrivenet.com/edu/article.php/668747.html%20
Tears before bedtime
A sleep-deprived child may appear the opposite of sleepy - so much so, finds Vivienne Parry, that he could be wrongly diagnosed with an attention deficit disorderBy the age of two, children have spent 13 months of their lives asleep. Sleep, as every parent knows, is central to kids' wellbeing. But as parents know equally well, bedtime can be the biggest battleground of family life.
There are three main sleep difficulties in children: falling asleep, staying asleep and being too sleepy in the daytime. Every parent experiences at least one of them at some point or other. Perhaps because of this, and because disturbed nights have become regarded as almost normal, we fail to appreciate just how important sleep is for our children's health. In fact, sleep has a major impact on their physical development and growth: when your mum told you you wouldn't grow up big and strong if you didn't go to bed, she was spot on. Research has shown that children who do not sleep as much as they should are smaller than they ought to be.
But the impact of sleep is not just physical. Sleep also has a profound influence on children's behaviour, emotions and ability to learn. Remember how gran told us to "sleep on it"? Children (and adults) need sleep to consolidate new learning, be it French vocab or bike riding. In one study, cutting children's sleep from 10 to nine hours a night had a marked effect on working memory and verbal task ability, in addition to making children irritable and "oppositional" - a marvellous medical turn of phrase that encompasses everything we dread as parents, from truculent defiance to constant picking of fights with siblings. And that's with just one hour less sleep a night, a time period that many of us would consider insignificant.
"The problem with children and sleep is that while we all know what a sleep-deprived adult looks like, we can't say the same of a sleep-deprived child." So says Paul Gringras, consultant in paediatric neurodisability at Guy's and St Thomas's NHS Foundation Trust and director of the trust's paediatric sleep disorder clinic. Such kids, he says, may not even appear sleepy: in fact, they may appear the reverse.
What all this means is that children's sleep disorders are not often recognised as such, although they may well be referred to hospitals for treatment of the behavioural or learning problems that occur because of their sleep deprivation. For instance, children with narcolepsy, a classic sleep disorder, may initially be referred for specialist assessment because of concern about "underachievement".
The situation is compounded by a lack of paediatric sleep disorder clinics. While Chicago alone has three, Britain has fewer than 10 for the whole country; most are adjuncts to adult sleep clinics.
Gringras sees plenty of children who have neurodisabilities such as autism and attention deficit hyperactivity disorder (ADHD) - and, he says, about 50% of them also have sleep problems. For children with ADHD, popularly perceived to be on the go all the time, this is not a surprise. Yet what is completely counterintuitive is that many of those with ADHD also experience daytime sleepiness, revealed by something called a multiple sleep latency test. It involves repeatedly bringing a child into a very dull room and asking them to lie down and go to sleep. "No normal child ever falls asleep in these circumstances," says Gringras, "whereas children with narcolepsy reliably fall asleep every time. The real surprise is that children with ADHD often fall asleep, too."
Some paediatric sleep specialists, such as Stephen Sheldon, director of the Sleep Medicine Centre at Chicago's Children's Memorial Hospital, go so far as to say that as many as 30% of children with ADHD have been wrongly diagnosed. "There's a proportion of youngsters that have sleep pathology causing their daytime symptoms that appear virtually identical to ADHD." Gringras does not go this far, but does say that sorting out underlying sleep problems can make a real difference to behaviour in those diagnosed with ADHD, so much so that in many cases drug treatments, such as Ritalin, are no longer necessary.
There is an increasing body of evidence pointing to a link between sleep problems and attention deficit disorders. For instance, work from the University of Michigan in 2002 by Dr Ronald Chervin showed that children who snored faced double the risk of being inattentive and hyperactive. "If there is indeed a cause-and-effect link, sleep problems could represent a major public health issue," says Chervin. But many paediatricians feel that disordered sleep is a consequence of ADHD, not a cause of it.
No one sleep disorder is linked to ADHD. Just as in adults, there are many different types of sleep problem, some of which can be revealed simply by careful history taking. Nor are overnight stays in a sleep lab always required as for adults. Children may be given an "Actiwatch" to wear at home, which records movement detection to a computer chip over a two-week period before the information is downloaded on to a PC for analysis.
"Basically, it tells us how much napping is going on," says Gringras. He points out that when parents think their darling is asleep, he may actually be reading under the bedclothes with a torch or, more likely, texting his equally wide-awake mates.
Even for those children reaching a tertiary referral centre such as the one at
St. Thomas's, the Little Angel-style behavioural approach is still of value, especially if the parents are supported by professionals. So-called "sleep hygiene" measures such as a bedroom that is dark and only for sleeping, consistent bedtimes and daytime exercise can make a big difference on their own.
A forgotten aspect is that sleep needs the right prompts, such as darkness. Light-emitting computer screens wake the brain up, not put it to sleep, so it makes sense to ban the PC from the bedroom.
Treatments for paediatric sleep disorders vary depending on the type identified. Sleep phase disturbances, for instance, are treated with light. Adult body rhythms, which naturally run to near 25-hour cycles, are reset every day by time cues, such as morning light, ensuring that we adhere to a 24-hour cycle. Circadian rhythm disorders are common in babies and toddlers, who may be wide awake when everyone else in the house is fast asleep, and vice versa. Somewhere between 18 months and four years old, children develop adult rhythms. But about one in 15 children between the ages of five and 13 continues to march to the beat of their own personal time drum. Essentially, what these children have is jet lag without having moved through any time zones. And like us after a red-eye overnight flight from New York, they are irritable, "oppositional" and sleepy, and can't concentrate or learn properly.
The answer for these children is not a fixed bedtime, but a firmly anchored morning wake-up time. Although letting them sleep an hour later is OK, a three-hour lie-in at weekends is disastrous because their bodies will reset their clocks every day to this rhythm. The most effective treatment is a simulated dawn at a fixed time each morning using light therapy.
Needless to say, most kids can't or won't sit still for long enough, so sleep physiologists (specialist healthcare scientists who collect sleep data) have to be endlessly inventive. Visors that look like something out of Nasa are one option. These have a light source under the brim, which, being near the eye, does not have to be too bright. Also effective in some cases are carefully scheduled doses of melatonin, the hormone that is slave to the body clock and which carries its messages.
Another common problem is obstructive sleep apnoea. In adults, this is accompanied by heavy snoring. Children with this respiratory condition may not snore, but still wake up up to 12 times an hour, making them severely sleep deprived. Because their breathing seems normal during the day and even for much of the night, except in REM (dreaming) sleep, the real cause of poor daytime performance often goes unrecognised.
Here it is measurements obtained in a sleep lab that are the clincher for diagnosis. These rely on healthcare scientists whose job it is to wire up, cajole and comfort children, and then stay up all night to take the necessary measurements, showing extraordinary dedication. These children's respiratory difficulties are very often bound up with enlarged adenoids and tonsils. Shrinking them with steroid sprays or removing them surgically may provide a complete cure.
In adults, the link between sleep disorders and health disorders such as high blood pressure and coronary heart disease has long been recognised. Poor sleep in children is already linked with obesity, and it is known that children with sleep disorders are more likely to become adults with sleep disorders; but there may be a lot more to unravel about the dangers of doing without sleep when you're a kid. It's definitely not something to shut our eyes to.
The Guardian
http://www.guardian.co.uk/g2/story/0,,1535951,00.html
Girls' autism 'under-diagnosed'
Girls with autism may not be identified because they do not show traditional signs of the disorder, an expert warns.Children with autistic spectrum disorders have poor social and communication skills.
Hyperactivity, and interests in technical hobbies have been seen as characteristics of the disorder.
But Christopher Gillberg, of the National Centre of Autism Studies, said girls were often passive and collected information on people, not things.
Around 535,000 people in the UK are estimated to have autistic spectrum disorders.
The number of boys diagnosed is much greater than the number of girls, but Professor Gillberg said the difference in incidence may not be as great as currently thought.
'Outsiders'
Researchers had looked at the male X chromosome, to see if genetic faults there could influence a boy's risk of developing the condition.
But no conclusive link has been found.
Professor Gillberg said: "Scientists had been very surprised that, so far, so little has come out of research into the X chromosome.
"But it may be that girls present differently to boys.
"The number of females with autism spectrum disorders may be under-diagnosed."
He said studies, including one his team had carried out into women with anorexia
who were also autistic, as well as his own clinical practice, had shown the gender difference.
He added: "Autism may be behind many cases of anorexia. A girl may be withdrawn and uncommunicative, without attracting attention, but when she develops a calorie fixation it becomes a serious problem.
"Counting calories may be a manifestation of autism.
"I've seen quite a number of cases where the anorexia has become completely entrenched because people haven't understood that underlying the eating disorder is autism."
Lists
"With some girls, there's a perception they are outsiders, someone who can't really mix with other children.
"They may tend to either avoid other children, or be on the periphery of the group."
He said boys were likely to show interest in technical or maths-related hobbies, whereas girls were more interested in people.
"They may have hobbies such as compiling books about their 'so-called' friends, and may make lists of their names and the colour of their eyes and hair, but not actually interact with them."
Professor Gillberg said girls may be perceived as simply shy, and parents and teachers may not realise there's a problem.
He added that differences in the way girls and boys learn to speak could also mask signs of autistic disorders.
"Girls tend to use language immediately, and use new words as soon as they hear them. Boys have longer periods of repeating what they know and processing what they are learning."
He said both genders may have the same combination of autism genes, but girls' natural linguistic ability may hide the associated language difficulties.
"Autistic spectrum disorders may be more difficult to pick up in girls, because
they have superior linguistic abilities."
Judith Gould, director of the National Autistic Society's Diagnostic Centre, said: "We still know so little about this complex lifelong disability that it is essential we continue to question current thinking and suggest alternative theories for its prevalence.
"We would certainly agree we are probably missing autism in girls due to the different way in which it often manifests itself in females.
"We would also agree that anorexia, which is predominantly diagnosed in girls,
could be linked to autism in an unknown proportion of cases."
BBC NEWS
http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/4630705.stm
'Gene test' for autism in sight
Scientists who have discovered a gene linked to autism believe they can use the new knowledge to work out an individual's risk of the condition.The French team from IntegraGen SA hope to have a working risk assessment test on the market by the end of 2006.
The gene sits on chromosome 16 and holds the DNA code for a protein that plays a central role in brain function.
Experts said the Molecular Psychiatry study was promising but that it was premature to talk about an autism test.
For their study, the French authors looked at 116 families where at least one member had autism.
By analysing the DNA from these individuals they found a region on chromosome 16 - PRKCB1 - appeared to be linked with autism.
PRKCB1 is expressed in granule cells in the cerebellum of the brain. Its associated protein is involved in transmitting signals from the granule cells to the Purkinje cells. Both these cells help relay messages in and out of the brain.
Researchers have already found a decreased number of both granule and Purkinje cells in the brains of people with autism.
Discovery
"We think that this is a significant development."
The test they are devising will check for the presence of four genes, including PRKCB1, linked to autism.
They envisage that families who already have a child with autism would be able to have their other children tested at an early age - around 18 months.
If the cheek swab sample is positive, it means the infant is at increased risk of developing autism and early interventions such as behavioural educational programmes, can be started, said Dr Hager.
Around 535,000 people in the UK have an autism spectrum disorder.
The condition affects the way people communicate and relate to people around them and sufferers have problems with everyday social interaction.
They have a limited ability to develop friendships and find it hard to understand other people's emotional feelings.
Other researchers have been attempting to identify genes predisposing people to autism, which are thought to be as many as 20.
In 1995 the International Molecular Genetic Study of Autism was set up. It has found areas on chromosome 7 that might be involved.
Future drug hope
He did not think it would necessarily be helpful or practical to use the knowledge to develop a risk assessment test because not all of the people with the genes would necessarily develop severe autism.
"The real potential for research of this kind is that it can, in conjunction with other research, lead to an understanding of what the disease processes are. In turn, that could lead to new treatments."
The National Autistic Society agreed.
A spokeswoman said: "If the genes responsible could be identified the possibility of new types of treatment and preventing the more severe manifestations of the disorder becomes stronger."
She said a genetic test to diagnose a pre-disposition to an autistic spectrum disorder was not, at present, possible because there were too many genetic and environmental factors involved in the condition.
Story from BBC NEWS:
http://news.bbc.co.uk/1/hi/health/4697057.stm
Groups argue vaccine, autism link
On the eve of a scheduled rally in Washington by parents of children with autism, leaders of federal health agencies and medical societies called a press briefing Tuesday to emphasize their message that childhood vaccines are safe and don't cause autism."We don't know what causes autism, that's a fact," said Julie Gerberding, director of the Centers for Disease Control and Prevention. But what is known, she said, is that in studies involving thousands of children, "the predominance of evidence does not reveal an association between thimerosal (a vaccine preservative) and autism."
Duane Alexander, director of the National Institute of Child Health Development, part of the National Institutes of Health, said NIH has increased its budget for research to find genetic and environmental factors that cause autism and to find better ways to diagnose the disorder accurately and as early as possible.
The debate over the possible role of vaccines in autism has simmered for years. But it gained new impetus this summer with the publication in Rolling Stone and Salon.com of an article by Robert F. Kennedy Jr., which claimed medical authorities deliberately hid evidence of a connection between autism and thimerosal. That followed publication of a heavily advertised book, Evidence of Harm, by author David Kirby. Media celebrity Don Imus and several legislators have also weighed in.
Thimerosal, a mercury-based vaccine preservative, is no longer used in the vaccines routinely recommended for children under age 6, Gerberding said. In 1999, health officials recommended that it be phased out of vaccines for babies to reduce their overall exposure to mercury.
It is still used in most flu shots, though preservative-free versions are available. Trace amounts of thimerosal still are in many vaccines, including those given to babies, because vaccine makers use the chemical during the manufacturing process.
Around 95% of children in the USA receive all the recommended vaccines by the time they start school. But health officials are concerned that could change, as a parent-driven movement linking thimerosal to increasing rates of autism gains steam and raises questions about vaccine safety.
Food and Drug Administration official Murray Lumpkin said vaccines have been "one of the mainstays" of public health, but "any kind of therapy is only as good as those willing to take it. One of our major concerns and goals is for parents to have confidence in the vaccines their health-care workers are recommending."
That message may not be getting through to activist groups planning to rally today at the Capitol to call for a ban on mercury in all medical products. Among groups participating are Moms Against Mercury, the National Autism Association and Safe Minds, whose director, Sallie Bernard, said health officials "missed the point" in Tuesday's briefing.
"The question is what did thimerosal do to these kids," she said. "The answer we got is they're really not looking at it. ... We heard some of the people today say 'we're researching the cause of autism,' but they're looking at everything but thimerosal."
By Anita Manning
USA Today
http://www.usatoday.com/news/health/2005-07-19-autism_x.htm
Very Premature Babies found At Risk For Disability
Children born prematurely at weights of 2.2 pounds or less during the 1990s have high rates of mental and physical disability despite advances in treatment that doctors had hoped would improve their conditions, researchers reported today.Although such infants were much more likely to survive than those born in previous decades -- the survival rate was 70 percent in the 1990s, compared with 50 percent in the 1970s and '80s -- they were just as likely to suffer from significant disabilities.
Asthma, cerebral palsy, vision and hearing disorders, low IQ, poor school performance and social difficulties are among the problems described in the Journal of the American Medical Association by doctors at Rainbow Babies and Children's Hospital in Cleveland.
Such disabilities were far more common in the children born prematurely than in normal-weight children from similar backgrounds. For example, 38 percent of those born prematurely had IQs below 85, as opposed to 14 percent of the normal weight children. Among the premature, 21 percent had asthma, compared with 9 percent of those with normal weight.
"We were astonished by the high number who had at least one of those things," said Dr. Deanne Wilson-Costello, an author of the article in the journal. "The majority had some kind of special need."
Advances in treatment helped infants' lungs to mature and helped to prevent brain hemorrhages that had been a major source of problems in the past, but did not help to prevent other types of brain injury caused by prematurity,
she said.
The study was the first to look at how very premature children born at the Cleveland hospital in the 1990s were faring when they reached school age. It included 219 8-year-old children born from 1992 to 1995. Most were from the inner city, and about 61 percent were black.
Other experts said the findings, though disappointing, were not a big surprise, given the fragility of tiny babies like those in the study who were born, on average, at 26 weeks of pregnancy, weighing less than 2 pounds.
Deciding whether to try to save such premature babies, given their high odds of having serious disabilities, has been a wrenching issue.
"Over the last few years, I think the trend has been for more intervention with these very tiny babies," said Dr. Richard Polin, the director of neonatology at Morgan Stanley Children's Hospital of New York- Presbyterian. Decisions are usually made by doctors and parents on a case-by- case basis, he said, adding that most hospitals would strongly recommend trying to save babies 26 weeks and over. Below that age, he said, many doctors would lay out the risks for parents and give them the option of not pursuing treatment.
"It's extraordinarily controversial, what I'm saying," Polin said. "Some people will get incensed about giving those families a decision about whether to go ahead."
Denise Grady, New York Times
San Francisco Chronicle
http://sfgate.com/cgi-bin/article.cgi?file=/c/a/2005/07/20/MNG8CDQJR71.DTL
'Smart cards' to reward well-behaved teenagers
Teenagers are to be offered discounts on items such as cinema tickets and sporting activities in exchange for good behaviour.They will be issued with "smart cards" - which will give them reductions on services as part of the Government's attempts to control anti-social behaviour. The cash discounts could be offered if, for instance, they volunteer for community service. However, they can be taken away again if a youngster lands in trouble with police and faces prosecution.
Plans for the new "smart cards" will be outlined in a Government Green Paper to be published this morning putting forward proposals for a shake-up of youth services.
The range of activities covered by the "smart card" could include public transport, libraries, cinemas, museums, a whole host of sporting activities and even shopping.
The theme of the Green Paper will be to offer teenagers incentives for good behaviour and disincentives for behaving badly.
Children's Minister Beverley Hughes indicated yesterday that the scheme will be "about celebrating when young people are doing well, as well as being able - through sanctions or not involving young people - to point to the fact that they have responsibilities as well as rights and if they don't meet their responsibilities, they jeopardise those rights".
"We are going to be proposing practical ways in which incentives and sanctions
could be built into the way young people access activities or decide to spend their time," she added.
Officials at the Department for Education and Skills discounted any suggestion
that the so-called "smart cards" could be used as an identity card for teenagers.
Any "smart card" scheme would be delivered locally with decisions taken locally as to what activities and services would qualify for the card. Schemes would not be compulsory for the teenagers and local councils would not be compelled to take part in them.
Today's much delayed Green Paper was originally due to be published last year when the thrust of the paper was more about improving youth service provision.
It has been rewritten to reflect Prime Minister Tony Blair's growing concern with anti-social behaviour.
Meanwhile, the Conservatives are today announcing plans for a new commission to investigate the delivery of special education needs in the UK.
By Richard Grice, Education Editor
The Independent Online Edition
http://education.independent.co.uk/news/article299978.ece
Special education teacher uses acting, drama background to teach children
David Braga dropped out of high school and later followed his love for drama and acting to the American Conservatory Theater in San Francisco.Being a teacher wasn't his original plan.
But after getting his degree in theater arts from the ACT, Braga felt he needed to do more with his life and sought a teaching credential from San Francisco State University.
There he met a professor who offered advice that led Braga to a career teaching special education children. He is teaching at two Turlock elementary schools — Cunningham and Osborn.
"One of my professors in special education (Adriana Schueller) told me that education and drama is a perfect match for teaching special education students, and it has been," he said. "If I weren't teaching, I would want to be on stage.
"And a great thing about being a teacher is you're always on stage and you have a captive audience."
Until last year, Braga kept his hand in the theater as an assistant artistic director and performer with the Patterson Repertory Theatre.
Before coming to Turlock, he taught special education at Wardlaw Elementary School in Vallejo.
With his father in the Navy, Braga traveled a lot, but spent most of his early years in San Diego.
After he dropped out of high school, he attended Lincoln Continuation School in San Leandro and passed the General Educational Development test.
Braga shared his thoughts on other topics:
ADVICE FOR OTHER TEACHERS: "Find joy in every child."
ADVICE FOR SCHOOL ADMINISTRATORS: "Be flexible when it comes to needs for special education children."
MY FAVORITE THING ABOUT BEING A TEACHER: "I have a drama club at Cunningham Elementary School and I bring a play that Kaye Osborn's drama program has done at Lakewood Elementary School in Modesto. She lets us have the old sets and we use the materials from Lakewood to put on great plays for the students, their parents and the community in the old auditorium. We've been successful."
WHAT'S NEW AND EXCITING IN MY CLASSROOM: "Just getting back to school and meeting new kids. I look forward to seeing what kids are in my class next year and working with Kaye … to pick the next play for Cunningham Elementary School."
WHAT I'D TELL GOV. SCHWARZENEGGER: "Teachers are professionals and we need to be treated as such. We've worked very hard for our pensions. Leave our pensions alone."
Do you know an inspiring and insightful kindergarten-through-12th-grade teacher who's making a difference and should be recognized? Contact Daryl Farnsworth at 578-2337 or dfarnsworth@modbee.com.
Daryl Farnsworth, Bee Staff Writer
MODBEE.COM
http://www.modbee.com/local/story/10960150p-11725912c.html
Blind campers have fun, learn
Casper Mountain stands just south of town as a refuge for fleeting moments away from the routine or an escape into nature. To the visually handicapped, Casper Mountain extends more than that with a few weeks of precious hospitality each summer.The Allen H. Stewart Blind Camp is held for two weeks each summer on the mountain, Gary Olsen, camp director, said. Olsen is completely blind and has been attending camp since 1969. He began teaching in 1973. The first week of camp is for children between the ages of nine and 15 and the second for adults over 16.
The campers are taught braille, orientation and mobility, adaptive technology for computers, cooking skills, cleaning skills, physical education and more. Lapidary classes, music classes and a leather crafts class are also offered.
A class on how to cope with sight loss is offered to the adults, because sight loss late in life can be frightening, Olsen said. Losing the ability to drive or read the newspaper every day will change a person's entire lifestyle. There is also a class offered for the significant others of the adult campers, designed to teach them how to be supportive, Olsen said.
Lions Milk Camp
Smith Shumway, a native of Cheyenne, lost his sight on Normandy Beach in World War II. Upon returning to Wyoming, Shumway approached the Casper Lions Club to present the idea of reopening the camp for the visually impaired. The first camp for the blind was held in the summer of 1946.
Prior to 1979, the camp was solely funded by the Lions Clubs of Wyoming. In 1979, the camp officially became a state project through the Department of Education. The Lions Club now leases the camp site to the Allen H. Stewart Blind Camp, which is run by a board of directors.
Skills for Life
"It is something I have had since birth," Hernandez said. Hernandez explained that he has limited sight but can read. There are bifocals in his glasses and he said he has to "get closer to things than other kids" to see them.
Hernandez loves coming to the camp because it is a place where he can learn and be around other children with similar conditions, he said.
"We want the kids to learn to overcome difficult situations," Olsen said. "They learn skills they can take with them to their communities."
For Chad Langley, the camp has become a mainstay in his summer plans. Langley, who was born blind with cataracts, has been teaching computer skills for three years at the camp. Langley had surgery as a child to remove the cataracts and is no longer legally blind, but still experiences some visual impairments.
Langley teaches the campers to use adaptive software to learn basic key boarding skills, basic Windows skills and some networking skills.
"I let them play games, too, but only on breaks," Langley smiled. "If the students learn young in life, that will help them later on."
Langley began attending the camp at age nine. He now attends Embry-Riddle Aeronautical University in Prescott, Ariz., where he studies aerospace engineering and software engineering. One of his dreams is to work for NASA designing space crafts.
"I never let my visual impairments hold me back," Langley said. "I have always just found my own way to do things."
Forming friendships
"We're best friends," Elwell, who lives in Laramie, said, as she hugged her friend's arm. "We met last year and we only see each other at camp."
Elwell has strabismus, or has crossed eyes, and Slagle has albinism.
"We were excited to see each other all year," Slagle, who lives in Casper, said. "We took pictures of each other last year to keep."
Camp is a special place for the kids, Olsen said.
"Sometimes, kids who are visually impaired are not accepted by their peers for whatever reason," Olsen said. "Some of the friendships made here become life-long. They don't have to struggle to be accepted here."
Even for the older campers, camp is a place for socializing. According to Olsen, most of the adult campers are senior citizens experiencing macular degeneration, a disease which causes degeneration of the retina resulting in decreased central vision or blindness.
"For people who have been sighted their whole lives, it is difficult to not be able to recognize people anymore," Olsen said.
Chelsey Dodge,16, is in her second year as an intern at the camp and eighth year attending camp. Dodge has aniridia, or an absence of the iris causing impaired vision.
"It is so peaceful up here. I love it, and I get to see the kids," Dodge said. "This is so important to them. Here, they know that they are not the only ones out there."
By Carrie May, Star-Tribune staff writer
Casper Star Tribune
Staff writer Carrie May can be reached at 266-0616 or caroline.may@casperstartribune.net.
http://www.casperstartribune.net/articles/2005/07/18/news/
casper/613600f4aad30d1087257040000430d2.txt
'Each of our children is different'
Billie-Jo Bailey is a happy friendly child who has lots of friends and enjoys school.For her family these are the important facts - that she also has Down's Syndrome is a secondary consideration.
Many people meeting her for the first time, however, tend to focus on her Down's first and foremost.
But as her father Richard explains Down's Syndrome is just a part of Billie-Jo, not the whole.
Different
And the results are a fantastic insight into Down's and the very different lives of the children with it.
Richard admits that before Billie-Jo's birth, he too had preconceived ideas.
"When she was born we had an image of Down's which was from people we saw when we were growing up.
"But all the children we met when we were taking the photographs were very different. They were more like their parents than 'Mr and Mrs Downs'.
"We just wanted to show how different all these kids were."
He said that although some children have heart problems and that this had initially worried them about Billie-Jo, she is a very healthy little girl and despite needing speech and language therapy is in a mainstream school.
"She is fantastic. She has all her little friends over from school for sleep-overs and she goes to stay with them. It is all pretty ordinary."
Richard said that taking the pictures for the exhibition - which are made up of portraits as well as the 365 head and shoulder shots - had allowed them to meet other parents and that some of them said they were still facing a lot of stigma and ignorance.
"One man had taken his son swimming and someone said to him 'Is it contagious'.
"They were obviously very ignorant, but people do have this stereotype that they all live in a home and are overweight with their tongues hanging out all the time."
Exhibition
Each child was photographed in the same black t-shirt to ensure that the focus remains on them, rather than on anything they are wearing.
He said many people had commented to both himself and the other photographers that it had helped change their perspectives.
"It has been absolutely incredible and has really taken off."
Liz Marder, paediatrician and medical adviser to the DSA, said medics are constantly trying to re-educate parents of newly diagnosed children about what to expect.
She said that much of the literature on Down's was out-dated and very 'pessimistic' and that she tried to give parents a more modern prognosis.
"We tell them that the children are all very different and very individual."
And she praised the exhibition for trying to correct many myths.
"I think it helps people put things into perspective. For instance only about half of children will have heart problems and they can vary from something that goes away by itself to something that can be life threatening."
A spokesperson for the Down's Syndrome Association said an exhibition like this has done much to change perceptions and right myths.
"Following the closure of long-stay institutions and now with the inclusion of children with Down's syndrome in mainstream schools, society's perceptions of people with Down's syndrome are improving year on year.
"However, positive images are still all too rare in the arts and the media.
"The 'Shifting Perspectives' exhibition makes it immediately obvious that the old prejudices about people with Down's syndrome such as "they all look the same" are utterly inappropriate.
The individuality, personality and humanity of every single child and adult pictured come across loud and clear."
Down's Syndrome
syndrome. (One to two babies are born with Down's syndrome every day in the UK alone)
There are 60,000 people in the UK with the condition
Although the chance of having a baby with Down's syndrome is higher for older mothers, more babies with Down's syndrome are born to younger women.
Down's syndrome is caused by the presence of an extra chromosome in a baby's cells. It occurs by chance at conception and is irreversible.
By Jane Elliott
BBC News health reporter
BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/4685639.stm
Video games have therapeutic potential -expert
LONDON (Reuters) - Parents take note -- video games are not all bad.In young children and adolescents they can lead to excessive use and aggressive behavior but a leading expert said Friday that the games ease pain, distract patients undergoing chemotherapy for cancer and help to develop dexterity.
"The degree of attention needed to play such a game can distract the player from the sensation of pain," Professor Mark Griffiths, of Nottingham University in England, said in an editorial in the British Medical Journal.
In patients with arm injuries, the games have been used to increase strength and dexterity while children with learning disabilities have played them to develop spatial ability.
"Therapeutic benefits have also been reported for a variety of adult populations including wheelchair users with spinal cord injuries, people with severe burns and people with muscular dystrophy," according to Griffiths.
Although the reported negative effects, which include wrist pain, hallucinations and repetitive strain injuries, have been widely reported, Griffiths said they tend to be temporary and could be caused by other factors.
"Some of these adverse effects seem to be rare and many resolve when the patients no long play the games," he added.
Griffiths, a professor of gambling studies, called for more studies into the long-term effects of video games and what constitutes excessive use.
"Further research should examine factors within games such as novelty, users' preferences, and relative levels of challenge and should compare video games with other potentially distracting activities," he added.
