 |
Main Menu |
|
|
 Home Community Members options Search Web
|
|
|
|
|
Survey |
|
|
How many children are on the spectrum in your family?
|
|
|
|
|
News- Page 3
|
Personal Stories : Managing autism
|
|
|
Posted by sylvia on Sunday, October 10, 2004 (14:33:35)
The Star 07/10/04
By DR Chung Yee Choong
As a doctor with an autistic child, it is not unusual for me to receive calls from other parents seeking my medical opinion. So a few weeks ago, I was asked about stem cell therapy. The parents of this autistic child were very excited as it seemed that a specialist from Switzerland was willing to treat their son with stem cell therapy.
This therapy, it seemed, gave a very good prognosis for a cure if the child was young (for age three years, the cure is supposedly 100%) but since the child is already nine years old, there is no guarantee of a cure but there is supposedly still a very good chance of recovery with absolutely no risk. A guarantee of total safety.
This specialist had to be wined and dined at the upscale Seri Carcosa and wanted RM60,000 for the treatment. I was taken aback. I have never heard of stem cell therapy for autism and contacted colleagues to find out more. I checked out the Internet and found that the only experiments which were done were on rats for Parkinson’s and Alzheimer’s disease.
The rats with signs of Parkinson’s and Alzheimer’s were injected with stem cells into the ventricles of their brain after which some improvement was noticed. No studies were done on autistic rats although I think it would have been impossible to find autistic rats for experiments. How would you diagnose autism in a rat, anyway?
This is something I could not understand or accept, but what I do understand is the desperation and the hopelessness that these parents feel – the need to do something, anything that could help because I am also a parent of an autist.
My daughter’s diagnosis confirmed what I had suspected but tried to deny. The diagnosis came through the mail, the result of a questionnaire from the Autism Society of America which I had filled up earlier. The questionnaire was sent to me after I wrote to Dr Bernard Rimland, a pioneer in autism research, to get to the bottom of my child’s problem.
I had taken her to see some specialists but no one could give me a diagnosis as there were no overt signs of autism then. She was then only three plus, and she was delayed developmentally and a bit floppy but it was not severe. But what bothered me most was the lack of eye contact and the absence of any response to speech.
Silent baby
She was a silent baby who hardly cried, hardly moved and seemed disinterested in everything around her. She was contented unless hungry or needed to be burped. She fed very well and was really cute and chubby. She was also very sensitive to touch. Any slight pressure on her skin would result in a red angry patch as if she was hit. Needless to say, she was very patchily red – somewhat like a Dalmatian with red patches instead of black.
I had expected her to be a special child as I had a fall midway through the pregnancy and landed smacked on my abdomen, after which foetal movements slowed so drastically that I had to sometimes slap my abdomen to make sure she was still alive.
She was born with a small scar over the left eyebrow and I knew that the fall had injured her head to some extent. But autism, this was something really out of my league, something I feared because it was totally unknown to the medical profession. Cause unknown, no treatment known and prognosis was hopeless at best.
Before the age of three, I had started sending her for speech therapy twice a week. The speech therapist was very optimistic then that she would only need six months to a year of therapy.
Six years later, she still had not made much progress from the day she started and we were still going to the same speech therapist. One parent whom I met told me about the gluten-free and casein-free diet and the British-based Allergy Induced Autism group.
I had a food allergy test (IgE) done on my daughter. Five items came back positive out of 10 tested. In short, she had multiple allergies. There must be some truth in what they are saying about diet intervention! There is some talk about a leaky gut causing this but most health professionals do not believe in it, including my husband who is also a doctor.
From the test results, we started her on a gluten-free, casein-free, egg-free, soya-free, banana-free diet and deleted foods that are known allergens but were not covered by the test. She was a little better, but there were so many episodes of regression which we could not put our finger on.
Speech did not come until she was about five but that was only limited to the alphabet and numbers from Sesame Street. We were getting more desperate as time passed. We sent her to many people who were recommended and tried various therapies which offered hope but none helped.
Problematic foods
After starting the diet and not getting the results I had hoped for, I began pin-pointing other foods that gave problems via a rotation diet. Sotong caused her to tip-toe and it also brought out a lot of anger in her. One small slice of orange was enough to keep me awake from 1am onwards as she would go around digging everyone’s eyes to wake them up.
Three small pieces of prunes and I would find her soaked in her own urine in the morning and she would behave like she was completely drugged out. She was already toilet-trained then but all would be lost for a few days because of three small pieces of prunes (organic ones too).
Broccoli and spinach also gave problems, so did kailan. These problematic foods were the ones she craved for and she could finish everyone else’s share if not stopped. They were supposed to be good healthy food and I felt guilty limiting them. We also started her on digestive enzymes and probiotics to improve gut health but we had reached a dead end as far as improvement was concerned.
One day when she was six, she escaped from her special class, went to the school canteen and helped herself to one piece of orange-coloured chicken nugget. That night when everyone was asleep, she covered her room – which was the master bedroom she shared with her two siblings – with faeces.
I just could not believe how one child could produce so much faeces. There were numerous large patches of faeces on the floor, bed, chair, towel, under the blanket, under the pillow, smeared all over the walls and windows. We spent the whole day cleaning up the mess.
We kept her home and I didn’t leave her alone that whole day until the evening when I had to take a shower. It was a very short shower but when I opened the bathroom door to come out, I could smell trouble. The room was again smeared with faeces although it was less. Shocked, I stopped her from attending school and other therapy until I could pin-point what went wrong. This never happened again as she never had the chance to eat any chicken nugget again.
After stopping school, I started her on a behavioural modification therapy called Applied Behaviour Analysis (ABA) which many parents from the parents support group, Parents Resource for Autism (PR4A), have done and have seen good results. ABA breaks down teaching into smaller components and many autistic kids have responded well to it.
It didn’t work out as I had hoped but I stumbled on her strong point: the written word. I had spent two weeks teaching her the colour red, collected red items and patiently showed her the red coloured items and asked her to give me the red items.
When I was convinced that she had mastered the task, I slipped in a grey object among the red items and asked her to hand me “redâ€. She picked up the grey object, passed it to me and said “redâ€. I knew then that the spoken word meant nothing to her. I wrote the word “red,†sounded it out and matched the red item to the word. It clicked.
That day, I introduced eight colours and she mastered all of them.
But after more than a year of staying at home, I noticed that she was only responding to me and not anyone else. I had to change the situation and found her a small private education for special needs and she has been there since.
Today, my daughter is 12 and reaching puberty. She is much better and happier. What we really want is happiness for our children. She is aware of other people’s feelings and actions. She is able to take instructions and follow through. She is able to apply logic on her own. She has lapses when the diet goes off a bit but I am hopeful that one day she will be able to follow the diet on her own.
Speech is still limited but it now has meaning for her. She has come a long way. But our journey isn’t over yet. Ours is a work-in-progress.
|
|
|
|
|
|
|
comments? |   |
|
|
|
|
Personal Stories : Trip is a triumph for an autistic son
|
|
|
Posted by sylvia on Sunday, October 10, 2004 (11:06:14)
The Inquirer 10/10/04
By Sandy Hartranft
My husband and I both have wonderful memories of cross-country trips with our families as children. The idea of taking our three boys - Glenn, 11, Danny, 9, and Ben, 6 - on this kind of trip had been brewing for years. Besides all of our concerns about car trouble, getting lost and the time in the car, we were worried that our youngest son, Ben, would not be able to handle such a trip.
Ben was diagnosed with autism at 21/2, and like many children with this disorder, he likes structure and routine. Would he be able to take that much car time and a different environment every day?
After much discussion, hours of planning, and tons of prayer, we threw caution to the winds and took the month of June to explore America. We started with a wonderful visit to Mammoth Cave in Kentucky. From there our goal was to reach the Grand Canyon.
This was especially meaningful because my husband proposed to me at the bottom of the canyon 13 years earlier. The view from our canyon-rim hotel was not to be matched anywhere else on the trip.
We then traveled to California and were able to stay for five days in Carlsbad. Actually getting into the Pacific Ocean was a special accomplishment for our water-enthusiast son, Glenn, and marked our halfway point. Legoland had been a dream for Lego fanatic Danny, and was a highlight of our trip. It lived up to every brochure and review we had read.
We then enjoyed five days in Colorado Springs, Colo., where we visited Focus on the Family and many other local attractions. All were fun and exciting for different reasons. Overall, we traveled 7,451 miles to California and back.
Ben did better than we could have dreamed on our trip. Having a TV with hours of his favorite programs (and earphones) helped him pass many hours in the car. A written statement from our pediatrician describing Ben's disorder helped at several amusement parks. We were able to obtain disability passes that expedited several rides and shows, thus avoiding the meltdowns that would have occurred with long waits in lines.
Each morning Ben would ask, "Is it a little bit away or far away?" in an effort to determine how long we would be driving. He was also very helpful at pointing out each Motel 6 he saw, in an attempt to get us to pull over for the night.
Were there stresses? Yes, but we would have had the same stresses in our own home.
At Ben's first speech session after the trip, the therapist wanted him to identify a picture of a map. When asked, "What is this?" Ben replied, "Millions and millions of miles."
It may have seemed like millions and millions of miles to Ben, but it will always be millions and millions of memories to me.
|
|
|
|
|
|
|
comments? | |
|
|
|
|
Personal Stories : Teen makes movie about his life with Autism!
|
|
|
Posted by KylePriebe on Wednesday, August 25, 2004 (16:51:18)
A 15 year-old high school student from Thousand Oaks, California, has made the news with his autobiographical movie entitled, My Life as an Autistic Boy. Requests for his movie, which is available in DVD and VHS, have come from around the world, and most of the states in the U.S.
In the movie, Kyle tells his own story, in his words, from birth through high school. His web site has newspaper articles about his movie, and the Temple Grandin Award he received for his efforts at helping others understand this lifelong developmental disability. Parents, grandparents and teachers have all praised his film for giving them hope and insight into the world of a brave young man with Autism.
Here are Kyle's words to describe his movie.
|
|
|
|
|
|
|
Read More... (4.4 KB) | comments? | |
|
|
|
|
Personal Stories : 'Being autistic is like moving house every day of your life'
|
|
|
Posted by Sylvia on Tuesday, May 25, 2004 (10:00:38)
Scotsman News 05/05/2004
By Susan Mansfield
It took the Evans family almost four days to reach their new home. A car-and-caravan trip the length of mainland Britain. Twelve hours on a ferry on wintry seas. Three children, two cats, 900 miles. A new life.
Twelve days before Christmas 2003, the family reached the village of Grobsness, 23 miles from Lerwick. On a chill December day, bleary-eyed from the overnight ferry, they saw for the first time the house they had purchased over the internet. Filmed by the BBC for the documentary series Safe as Houses, their faces show a mixture of excitement and apprehension. A new beginning, or the biggest mistake of their lives? Either way, there would be no going back.
Duncan and Kerry Evans decided to move from Clacton in Essex to Shetland because they believed it would offer them a better standard of living as a family. Duncan, the editor of a digital photography magazine in London, wanted to develop his career as a writer and photographer while sharing the burden of caring for the children with Kerry, allowing her to develop her writing career. Above all, they hoped that the quieter environment would help their two autistic sons, Chris, 13 and Jacob, seven.
"Like all families, we had many reasons for moving," Kerry says. "We had always intended to relocate to Scotland at some point because over the years we have been coming on holiday with the boys, we have always noticed a slight improvement in their ability to communicate and concentrate. I wanted to work more and change my life, Duncan wanted to change his life, not downscale, but find different ways of working. I’m 39, Duncan is 40, maybe we just started thinking there’s more to life than sitting at a desk staring at a computer."
Their long-term relocation plan became more urgent when problems developed at Chris’s school. His behaviour was worsening and the local authority, which had earmarked the school for closure, recommended that he be placed at a specialist boarding school. Kerry and Duncan were convinced that Chris, who is obsessed with routines and can become distraught and violent when his environment is disrupted, was better off at home.
That meant moving to another local authority area where there was better provision for Chris. However, Safe as Houses presenters Emma Basden and Jason Maloney questioned whether the move to Shetland was a desperate last-ditch attempt to keep the family together. "It was something we were going to do anyway," says Kerry. "We considered lots of other options, including Duncan moving to other jobs in England. We researched it very deeply."
It was a tough decision which could not be taken without considering the effects on all three children, including five-year-old Chloe, who is not autistic. She was happy in Clacton, showing a real talent for drama having just passed her first the London Academy of Music and Dramatic Art exam with distinction, performing at the level of an eight-year-old. It had also taken Kerry an 18-month battle to secure local authority transport to take Jacob to his school in Colchester, where he was doing well.
However, after deep consideration, the house hunt began. The autism meant that looking at houses with the boys was impossible, so Kerry stayed at home, eagerly hunting out properties on the internet, while Duncan took to the road on a series of house-viewing trips. The family had some very special requirements for their new house. Many autistic children are skilled escapologists with almost no regard for their own safety. They needed plenty of space, indoors and out, and no busy roads or very near neighbours.
Every time they found a property they liked, Kerry had to look into what care and education would be provided for the boys in that area. Many parents of disabled children are concerned about what they call the "postcode lottery": provision varies widely from one area to another. "Even though you make enquiries before you move, it is still a gamble," says Kerry. "Provision looked better in Shetland because of their willingness to put the provision in place if it wasn’t there. But nothing was cast-iron until we got here, it was a risk."
Duncan looked at more than 30 properties all over the North of Scotland, from Morayshire to Skye, from Caithness to the Shetland Isles. There were many disappointments and some surprises: an old station house which seemed perfect for the family but for the fact that the railway line ran straight past the kitchen window; the house which came complete with six llamas, a parrot and a Vietnamese potbellied pig; the dream-home they lost out on to "some cash-rich Norwegian". Still others were discounted because Chris would be expected to cope in a mainstream school, or because of the lack of availability of services such as speech therapy.
With their house in Essex on the market, Duncan handed in his notice at the magazine, but still a new home had not been found. There was no more time or money for fact-finding trips to the far North. This led them to buy their current home on Shetland without having seen it. However, Kerry says they did more research into the property than most prospective buyers. "We commissioned two surveys, and various specialist reports. We had been in the area, so we knew where it was. We went into minute detail, more detail than most people do when buying a house."
Their offer on the property was accepted. However, the sale of their house in Clacton fell through twice before a third buyer saved the day. Two weeks before they moved, they were concerned about the potential of carrying two mortgages and wondered whether they should call off the move all together.
They arrived in Shetland after a four-day journey, in the teeth of a Shetland winter, and spent the first few weeks living in rented accommodation waiting for their furniture to arrive. The normal stresses of moving were made much worse by the boys’ autism: both Chris and Jacob were disrupted by the lack of routines and familiar environments. The lengthy process meant the Safe as Houses team weren’t able to film them settled in their new home.
After more than four months in Shetland, Kerry is confident that the move has been a good one: "We managed to achieve our dream and change our lives. We’re all loving it. We couldn’t have got a better location, we’re down a private road, three miles from the nearest neighbour and there are no cars. It’s the ideal property."
The programme raised the potential problem of isolation, particularly since Kerry does not drive. She says it’s perfect. "We love being isolated. With two severely autistic children, you live an isolated life anyway. Family and friends drop by the wayside, because they can’t cope with the severity of the autism.
"Here it is so quiet, so underpopulated. That’s very important for the boys. Yes there are still tantrums, but we’re able to do more together as a family. The other day we took the children to Voe, and a seal appeared and swam with Chris for 15 minutes. Sights like this are so important for us, and there are no stares and judgments from people so the boys can be themselves."
Chloe is enjoying her new school and benefiting from the smaller class sizes. After a few struggles, Jacob, at primary school in Lerwick, is progressing well. Chris has a new three-room unit tailored for his needs at Anderson High School in Lerwick. "It did take quite a while for the authorities to get a school place for him. But I take my hat off to the Shetland local authority, they have done everything to accommodate him living at home. They passed a budget within a week to turn an empty block of a mainstream school into a little unit for him. He can integrate with other children at his own pace.
"I’m writing more, Duncan is taking photographs. We still don’t have much time together, but sometimes we sneak off in the day and go for a pub lunch. We don’t have the stress to the same degree, we are both at home most of the time, so it is more equal, more balanced. We’re still very tired, but we manage to have as full a life as we can."
Kerry is currently finishing her book about autism, Marooned, and planning a book about Shetland.
There are challenges: waiting weeks for the missing parts to arrive for their new kitchen or being snowed in for days. After Easter, budget cuts meant Chris’s school transport was axed. Kerry and Duncan fought the decision and it was reversed.
"I miss the shops," Kerry says. "But there are other things about Shetland which make it more than worthwhile. I have been invited out by local people, I’ve been offered to learn how to dive, a local man has offered to take the boys out on his boat. We’ve never been made so welcome anywhere."
Above all, she hopes that by televising their story more people will understand what caring for two autistic children is like. "They feel isolated, constantly uprooted and need the reassurance of familiar things around them, just as we all do on moving day until we establish roots once more and cement friendships and bonds.
"Being autistic is like moving house every day of your life."
Kerry is happy to receive feedback or answer questions at Kerry3E@aol.com
|
|
|
|
|
|
|
comments? | |
|
|
|
|
|
Latest: 
New Today: 1
New Yesterday: 0
Overall: 7437
Members: 0
Visitors: 9
Total: 9
1: