call me jaded
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Posts posted by call me jaded
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Better out than in. Pretending everything's fine when it isn't is not healthy.
I'm sure they're in shock. It will be a test of true friendship to see how they react to this once they've got over the initial surprise.
Don't make yourself feel bad about this, your feelings are normal.
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Well done desperate.
Does this mean you have to change your user name?
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At my request the school set up a workspace for my son. The reason he needs it is that his 'personal space' is absolutely huge and he is uncomfortable if anyone is anywhere near him. Works a treat. It's a special school.
Segregation is not necessarily negative IMHO.
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I'm married to a foreigner. He has no time for any of this Englishness, as he calls it. It all gets said, good and bad. It's probably why I wade in on here. I am much more diplomatic in RL.
Anyway I'm probably being a bit harsh on the letter front. It just seemed as if it was done to make people cry.
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Anybody else going on the walk?
http://www.naar-uk.org/Downloads/NAAR%20flyer.pdf
I do like it when an article says Autism is a complex disorder, then gives a simplistic explaination of it:QUOTE
Autism is a complex brain disorder that often inhibits a person's ability to communicate, to respond to surroundings, or form relationships.
A rehash of the triad by a junior journalist.
I applaud anybody giving �50million of their own money to autism research.
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Looking for autism answers(Filed: 30/06/2005)
The facts
Philanthropist Dame Steve Shirley is leading the fight to understand autism, reports Cassandra Jardine
When she was young, Dame Steve Shirley is explaining, cancer was referred to as the "Big C". Different types of cancer were lumped together in one general, frightening concept. "That's where we are with autism now," she says.
A life dedicated: Dame Steve Shirley, whose son Giles died in 1998. 'What I remember most about him was his smile'
Fifty years on, the various types of cancer - their causes, patterns and treatments - are much better understood as a result of co-ordinated worldwide research and patients' chances of survival have improved considerably.
She would like the same to happen with autism, which is why she has dedicated not just her time, but �50 million of her own money to improving our understanding of the disorder.
When Giles, her only child, was diagnosed in the Sixties, Dame Steve had never even heard of autism. Looking back, she suspects that her father, a high court judge who was fascinated by railway timetables, might have been on the autistic spectrum, but in those days, it was scarcely known, and she received little help.
In 1998, Giles died while having an epileptic fit. He was 35. For each of those years, her life was dominated by the struggle to care for him. Her only escape was in running the software company - formerly FI, now Xansa Plc - which made her one of the richest women in Britain, and prompted her to change her name, for business purposes, from Stephanie to Steve. "The only time I could forget Giles was when I was working," she says. "And the only time I could forget work was when I was with Giles."
He was difficult to care for. Even as a baby, he did not respond to her or her physicist husband, Derek. By the time he was three, he was violent and uncontrollable. For a woman who is wearing a pale pink suit, and works from a flat in Henley, decorated entirely in pastels, it must have been hell having a child who wrecked everything, head-butted her, and threw his food on the floor.
As Giles grew older, he lost what little speech he once had. "He was a distraught, unhappy child who knew only pain," she says and, by the time he was 13, she was so worn down by looking after him during the day and working - mostly at night - that she had a breakdown. For the next 11 years, he lived in a hospital. "It was him or me," she says, but she doesn't feel guilty because she did all she could, including starting a therapeutic home in which he lived for the last 11 years of his life.
The home, her first charitable involvement with autism, is now the Kingswood Trust, which cares for 39 profoundly disabled young adults. Next, she set up Prior's Park, a school which equips severely autistic children for simple work.
Driven by survivor's guilt - as a half-Jewish child, she came to England from Germany on a Kindertransport - she has always put her gifts to full use. Now, aged 71 and retired, she is using her business experience to create a coherent, rigorous and strategic approach to autism.
"What do we have to do," she asked herself, "to get at the causes of autism?" Her answer has been to become the driving force behind the National Alliance for Autism Research. Last year, she used her charitable Shirley Foundation to commission a survey of all the research in the field. She found that much of it was bitty, duplicated and dealing with outlying issues.
This week, one of the first signs of this more strategic approach was evident when she brought together academics from Britain and the US. In the august surroundings of the Royal Institution, renowned names like Simon Baron-Cohen (whose recent book described autism as an extreme form of maleness) talked of the areas of the brain affected, the genes that appear to be responsible, and the studies currently under way.
The recent sharp increase in autism has led to fierce debate: is this due to better awareness or a real increase? Those who believe it to be an epidemic have cited possible causes: vaccinations, antibiotics, medicines taken by pregnant women, or dietary factors.
Dame Steve believes that, as with cancer, it will soon be possible to unpick the many differing disorders, currently bracketed together under Autism Spectrum Disorders. It would cost �400 million to fund the research: "That's way beyond my means," she says, so her plan is to raise awareness in Government through a walk in Windsor Great park on July 10, at which 300,000 are expected.
In his last years, Giles was doing well - he could paint, look at pictures, and was less frustrated, because he had been taught how to communicate yes and no, non-verbally. "What I remember most about him was his smile," she says.
When he died, she thought she would never be happy again, but her mission has given her a new purpose. "When Giles was alive, 99 per cent of my efforts went on being his mother. Now, I can concentrate on being a friend to autism. I'm happier than I've ever been, because I'm not just giving away money, I'm getting so much from it."
cassandra.jardine@telegraph.co.uk
For further information, see www.naar-uk.org; 01491 412311
The facts
Autism is a complex brain disorder that often inhibits a person's ability to communicate, to respond to surroundings, or form relationships.
First identified more than 50 years ago, it is typically diagnosed by the age of two or three, and affects people of all racial, ethnic and socio-economic backgrounds. It is four times more common in males than females. While some are mildly affected, most people with the condition will require lifelong supervision and care, and have significant language impairments. Since there is no definitive blood test or scan, diagnosis is based on observation of behaviour. Despite increasing national interest and high prevalence - one in 167 is widely accepted - autism research receives less funding than many less common medical problems.
http://www.telegraph.co.uk/health/main.jht...30/ixhmain.html
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It could be that the gluten and casein intolerance was masking another food intolerence which is now showing. Third on the list is soya. Are you giving a lot more of this? Then again, it could be the toxins.
I presume you are keeping a food and behaviour diary which will help make the link. I always note down change in shampoos and washing powders, etc too.
Although the gluten content is quite low in oats, it can be absorbed through the skin. There are also quite a lot of milk products in bubble bath. I would just bathe in seasalt baths (normal salt has an additive to make is flow easier). You can get GFCF products at the health food shop (Green People is one brand).
And what about a homeopathic cream? Browse the Ainsworths site for some ideas.
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tizzmeclare
Just go for it. You may get some withdrawal (about day three it can all go pear-shaped), so don't expect it all to go smoothly. Supplement with vitamins and minerals and then you won't worry about how much he eats.
Elanor
My GP was prepared to send me to a dietician, but the appointment never came through. I never chased it up because my neighbour is a nutritionist and I run things by her.
The Institute of Optimum Nutrition is supportive of GFCF. Their website has details of practitioners and you can be assessed in London by student practitioners (under strict supervision) for a reduced rate, if not free.
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Yes, you are withdrawing the source of opioids, so he's not going to be happy. It's like anything addictive. The fact that you are getting a reaction is encouraging, although you may not feel it right now. I've read many parents' stories. A week to 10 days totally GFCF is almost always enough to see whether it's going to work for you. So I'd say try it for two weeks.
The autism/gastro link is pretty well established right across the spectrum. My son was certainly autistic from birth, not a regressive case at all (though I don't think vaccination helped him).
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I think you will probably get this aggression and hyperactivity as long as there is any gluten at all in the diet. That's certainly the way it is with my son. I would recommend that you try to do this as soon as possible.
Withdrawal for us was prolonged: very lethargic, irritable and difficult to engage. For a while it felt we were going backwards and about 6 weeks in I was ready to give up. I re-read everything and found Lisa Lewis and the Sunderland protocol both very useful at this stage in confirming we were doing the right thing.
This is no quick fix, but does pay dividends in the end.
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Libbeth I can so relate to what you have written. My son managed to get chickenpox at three months. My GP was astonished, a baby normally carries the mother's immunity for six months or so.
Constant colds, ear infections which never cleared up. Diarrhea always. When we got a new school nurse she told me to keep him off until he'd passed normal BM for a couple of days. She was surprised when I said he'd never be at school if we waited for that to happen. The vomiting that went in cycles (though we never had it diagnosed as such). Failure to thrive - he dropped off the bottom of the chart. The violence was the last straw.
The good news is you can do something about this. It sounds like the ABs have allowed the wrong kind of bacteria to grow in the GI tract - candida albicans or clostridia are two of the culprits. This is the cause of the current agression, IMHO. It's a common problem which we only had to deal with once with a course of probiotics.
The thing that really helped is the gluten free, casein free diet. Look up the Sunderland Protocol and browse the diet threads here. There is a very active forum called GFCFKids at yahoo groups and it is really worth lurking there. You'll pick up so much knowledge.
We have been doing this diet for 3 years + and this last year my son has had only two days off school sick. Beautifully formed BMs (these things matter), no aggression, dimples on his bum, no longer withdrawn, regulates his body temperature well, sleeps well. So many more positives, can't think of them all.
It does seem pretty hard to do at first, but it quickly becomes second nature. I save the hassle of reading lists of ingredients by buying organic and cooking most things from scratch. Have never found a reasonable bread substitute so don't do much of that.
Of course he didn't eat anything for three whole days when we started (and I wasn't sure who was going to crack first) and had a prolonged withdrawal period (three months) but we really haven't looked back. The diet, fish oils, vitamin and mineral supplements have all contributed.
Best of all he is back with us, part of our family.
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Writing has been very therapeutic to me, as it makes me order my thoughts and think hard about what I mean.
Writing the letter to your child seemed unnecessarily emotive, as it seems to me to be addressed to the child that should have been rather than the one you've got. I'm probably putting a whole lot into it that isn't there, but it did come across as an act of regret. I've dealt with my loss, I don't need to address it. As a method of communication to my son it just wouldn't work. He is non verbal and non scribing (if that's the right word for handwriting), can read a bit. I talk to him a lot. He reciprocates by look and touch. We are very atuned to each other.
Anyhooo. Enough already
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I wasn't going to post on this as I have been opinionated enough already, but it seems to me that they are using NLP (neuro linguistic programming) in their sales pitch to parents. Surf the shopping channels until you find a Tony Robbins presentation to see what I mean.
What I don't like is that they are asking a lot of money for you to do all the work.
Write a letter to your child. Well, no thankyouverymuch. He's here, I'll just talk to him.
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Growth of the baby whilst you were pregnant. 'Small for dates' babies. Any full term baby under 2500g at birth gets a question mark over its development. My son was 50g over.
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http://www.trusthomeopathy.org/trust/tru_nhs.html
The Royal London Homeopathic Hospital has been around since 1849 (I just looked it up) and became part of the NHS at its inception, so not so alternative as you may think.
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Ok, Lucas! It's snake oil and quackery.
But works for us. I don't even pretend to understand why.
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Actually it hadn't occured to me, but I haven't been watching much. Had to think hard to work out which one was Eugene. I saw him crying in the diary room and thought he was very vulnerable, and sweet. He just didn't pick up the vibes between the two girls, which (now I come to think about it) is just typical.
Will watch with interest.
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The philosophy of treating like with like is actually a fairly harmless way of going about things. In mainstream medicine the EPD technique and other forms of desensitisation are used to treat allergies, and I would guess it is the same principle that makes homeopathy successful with my intolerant child. Who cares? It works for us, which is more than allopathic medicine does.
Vinton McCabe is good to read on the theory of homeopathy.
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The doctors name is Ennis. This is from The Independent:
"Sceptic's tests support homoeopathy. Now the challenge for scientists is to
repeat it
By Steve Connor, Science Editor
19 August 2004
To some it is the snake oil of the New Age. To others it is a
tried-and-trusted treatment that has been good enough for the likes of Bill
Clinton, the Prince of Wales, Geri Halliwell and David Beckham.
Homoeopathy is big business and getting bigger. Yet there is little if any
evidence to show that it works, and absolutely nothing to justify its
central claim - that highly diluted solutions containing nothing but water
can affect human health.
That is until now. Researchers have just published what could be the first
hard evidence in a peer-reviewed scientific journal that appears to support
the central idea behind homoeopathy.
The scientists, from Britain, France, Belgium, Italy and the Netherlands,
have chosen the relatively obscure but respected Inflammation Research to
publish what some call the "holy grail" of homoeopathy.
In summary, the study found that extremely dilute solutions can have a
biological effect. Like homoeopathic remedies, the solutions in the
experiments were so diluted that there was no realistic chance of a single
molecule of the substance remaining in the liquid.
Scientists have likened this to believing in magic. How could something that
was once dissolved in a solution, and can no longer be present in that
solution, still have an effect? The scientists themselves are baffled. "We
are not yet able to propose any theoretical explanation of these findings,"
they write. In showing that high dilutions exert a biological effect, the
findings seem to break the laws of physics. Surely there must be errors in
the experiment; an accusation the scientists reject. "Despite searching for
artefacts, we have been unable to find any," they write.
An editorial in Inflammation Research explains why the journal published
such controversial research: "The authors are unable to explain their
findings but wished to encourage others to investigate this area," it says.
"It is with this spirit of openness that the journal, after submitting the
paper to a rigorous reviewing process, has agreed to publish the paper."
Understandably, the practitioners of homoeopathy have seized on the findings
as vindication. Peter Fisher, of the Royal Homoeopathic Hospital in London
and homoeopath to the Queen, said the findings were nothing short of
groundbreaking. "History may come to view [the study] as a turning point in
the scientific controversy surrounding homoeopathy," Dr Fisher said.
"Of course further repetition is required, but it may be that this
represents the holy grail of basic research in homoeopathy," he said.
There are two central tenets of homoeopathy. The first is that an illness or
malady can be treated by administering tiny amounts of a substance that
might under normal circumstances actually result in similar symptoms -
extract of onion for instance to treat hay fever.
The second belief is that the concentrations have to be really minute, so
minute that the dilutions involved in effect get rid of the substance in
question from the liquid solvent.
Homoeopathic solutions are diluted repeatedly to produce solutions that are
millions of times weaker than they were originally. Often the solutions are
so weak that they are equivalent to dissolving a tiny speck of something in
a volume of water several times greater than all the world's oceans.
Scientifically, this would mean that the chance of just a single molecule of
the homoeopathic remedy being left in the solution is next to nil. Sceptics
say patients might just as well treat themselves with distilled water -
which is cheaper.
Science cannot explain how such highly dilute solutions could have an
effect, that is until the French biologist Jacques Benveniste came along.
Working at his laboratory in Paris, Dr Benveniste formulated the idea that
water retains a "memory" of what has been dissolved in it and that it is
this memory that results in the homoeopathic effect. In 1988 Dr Benveniste
published a study in the journal Nature in support of his water-memory
theory. He claimed his experiments showed that an ultra-dilute solution
exerted a biological effect.
However, the then editor of Nature, Sir John Maddox, had insisted that he
would only agree to publication if he was able to investigate Dr
Benveniste's laboratory procedures. A few weeks later Sir John invited an
American science fraud investigator, Walter Stewart, and a professional
magician and arch sceptic, James Randi, to watch over Dr Benveniste as he
and his team tried to repeat the experiments.
The Nature investigation concluded that Dr Benveniste had failed to
replicate his original study. In subsequent issues of Nature, Dr Benveniste
suffered the professional ignominy of being ridiculed by arguably the most
influential scientific journal in the world.
As a result, the idea of memory water was consigned to the dustbin of
science history, or so it was thought.
France as a country is a keen advocate of homoeopathy and there were many
French scientists who had not given up on the notion of investigating the
phenomenon. Among them was a one-time collaborator of Dr Benveniste called
Philippe Belon, who now works for a French homoeopathy company, Boiron.
Dr Belon, who fell out with Dr Benveniste a long time ago, has investigated
high dilutions for 20 years and although he works for Boiron, and has
himself tried homoeopathic remedies, he insists he is only interested
discovering the truth about the claims.
In the spirit of scientific investigation he organised a collaboration
between four different groups in Europe who all undertook to carry out
identical high dilution experiments at separate places involving separate
teams of scientists.
The British end was run by Professor Madeleine Ennis, an established asthma
researcher at Queen's University of Belfast and an avowed sceptic of all
things homoeopathic.
In fact Professor Ennis became involved in the project in the first place
because she could not accept what some of her scientific colleagues were
saying. "I told people I didn't believe it so they said 'why don't you try
it'," Professor Ennis said.
The dilution experiments they carried out, and now published in Inflammation
Research, involved a substance called histamine which is released by a type
of white blood cell called a basophil. Normally basophils release histamine,
and as levels of histamine rise this exerts a "negative feedback" which
inhibits further release of histamine.
The four teams of scientists tested highly dilute solutions of histamine to
see whether they still exert an effect on basophils in a test tube. At
extreme dilutions, three out of four laboratories found a statistically
significant effect and the fourth found an effect which just fell out of the
typical range for statistical significance.
Professor Ennis emphasised that the research does not prove that homoeopathy
works, nor does it even show that Dr Benveniste was right because he had
used a different test for a high-dilution effect. "The paper didn't test
homoeopathy, it tested high dilutions of histamine. I know what we tested
and I cannot explain the results," said Professor Ennis.
For Dr Belon, however, the research does at least support the basic premise
behind homoeopathy. "Of course it supports it, on the other hand it is not a
demonstration that homoeopathy works," he said.
In whatever ways the latest findings are interpreted, they cannot be
ignored. The experiments were repeated by four different teams using the
same experimental protocol that involved a blind code - the scientists did
not know whether they were working with a high dilution solution or a
control sample of pure water until the code was broken at the end of the
experiment.
When BBC Horizon televised a similar attempt at replicating the same
experiment two years ago, the results were negative but scientists such as
Dr Belon believe this was trial by media rather than science by the
peer-review process.
This time, with a full scientific paper detailing the precise protocol,
anyone can try to replicate the findings - and replication is the essence of
science. Until others repeat the work it will take a lot to convince
sceptics such as James Randi, who has offered $1m to the first person to
prove the scientific basis of homoeopathy.
Mr Randi warns about reading too much in a single scientific paper. "A paper
is a paper is a paper. Don't forget, two scientists wrote a paper, published
in Nature, back in 1974, that endorsed the powers of Uri Geller," he said.
But the homoeopathic gauntlet has been thrown down. The question now is
whether anyone will be brave enough to pick it up."
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There is an Irish researcher whose name escapes me who tried hard to disprove the effectiveness of homeopathy a couple of years ago. She failed and was generous enough to be gracious in her defeat.
Being rather tight-fisted I question whether you need a homeopath to try this when you can order homeopathic drops formulated for children with autism for around �8. I've always kept a food/behaviour diary before during and after anything new. Only try one thing at a time.
Read Paul Shattocks review of secretin (he's not referring to the homeopathic formula, but the porcine hormone) on the ARU website.
I've never done it myself, as my son's digestive difficulties were dealt with by GFCF diet.
Further reading 'Children with Starving Brains' by Jacqueline McCandless.
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These are proving elusive.
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Isn't this the Audit Commission figures? I'll go and look it up.
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Me again with another totally off the wall suggestion.
He could be sensitive to sodium laureth sulphate (or sodium lauryl sulphate) which is in most bath and shower products. We go to the health food shop and buy a litre sized pump of SLS free product for slightly over �5. Currently using Jason's mango scented which is lovely.
Rosemary Waring has done some research which shows sulphur metabolism is malfunctioning in people with autism. The recommended intervention for this is Epsom Salts in the bath. My son always asks for this in his bath. Under a �1 for tub from the chemist. Boots do half kilos which is more cost effective, if you can get there before the rose growers.
I've no idea if the two are related. SLS is in toothpaste too, I think.
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Sounds like you're all ready! Good luck.
Horrible, horrible evening...
in General Discussion
Posted · Report reply
Kathryn's just reminded me of my most public outburst. At school (of course).
To set the scene this was my eldest daughter's Reception Year school assembly. She had started in nursery painfully shy but had actually begged me to ask the teacher for a line. We practiced looking up and speaking loud all week.
Eldest son (ASD), with excellent timing, had been up all night the night before the performance. He was staying home from school but was well enough to go and watch. I was very tired, with a one-year old who was yet to sleep through the night but hey, just for once, I was going to be normal.
So Grandma is helping with my toddler and we arrive nice and early to get a seat where there is plenty of room. The hall fills up. DS, who's not on good form, gets a bit panicky so we manouvre to the rear of the hall, I'll stand by the door and watch. Well, no, the door has to be shut (Health & Safety). DS is throwing himself on the floor. Another mother from my daughter's year group is open-mouthed, "Good grief, what's the matter with him?" I decide to cut my losses and take DS for a walk whilst Grandma and titch enjoy the show. A late arriving Mum holds open the door for our escape. "You could have said thank you", she says as I try to keep son in his major buggy going through the door - he's wriggling down underneath the strap.
There's a park opposite the school, so I compose myself and let my son climb. I've not cried yet, I'm waiting til I get home. DS is a lot calmer so I go back to collect Grandma.
Everybody is coming out of the hall and my daughter's Nursery Year teacher congratulates me on how well my daughter did. I smile and say I didn't see it, DS couldn't cope. Her look of disappointment was what triggered me off and I howled and howled whilst the entire school trailed past me.
The headteacher now realises something is wrong (!) and asks me to talk in her office. I manage to say "I can't talk right now" whilst getting through the best part of a box of tissues. The Nursery Teacher explains I didn't see the performance (all eight minutes of it), and with superb prescence of mind the Head announces to my daughter's year group that they're going to do it again. So I am placed on the front row for my very own assembly, which I watch through even more tears. I don't think I actually stopped crying until the next day. I am reliably informed that my daughter spoke her sentence very well, both times.
So, bid, I hope that makes you feel better, at least you haven't cried in front of an entire school.