MEDIA ADVISORY
For Immediate Release
February 29, 2008
AUTISM TOWN HALL MEETING WITH MINISTER MATTHEWS AND MINISTER WYNNE
Toronto – February 29, 2008 – The Alliance for Families with Autism (AFA) is pleased to announce we are hosting a Town Hall Meeting regarding the issues surrounding autism on Tuesday, March 18, 2008. The meeting will include Ministers from the Ministry of Children and Youth Services as well as the Ministry of Education.
In attendance will be Hon. Deb Matthews, MCYS and Hon. Kathleen Wynne, MEDU. All parents and families are welcome to attend this unprecedented event. It is a unique opportunity for the autism community to voice their opinion with regards to current programs and receive an update from both Ministers regarding the direction of their ministries for the future.
The Alliance for Families with Autism (AFA) is a volunteer organization. Our executive members include parents and a grandparent of children with autism. Our mission is improving the lives of children and adults affected by autism. We continue to provide factual information in a non-partisan approach to all stakeholders.
LOCATION: Bur Oak Secondary School , 933 Bur Oak Avenue , Markham , Ontario
DATE: Tuesday, March 18, 2008 6:30 pm-8:30 pm
Following the Town Hall Meeting there will be media availability at 8:30 pm. Executive members from the AFA as well as Hon. Deb. Matthews and Hon. Kathleen Wynne will be present for interviews.
For more information please contact,
Cindy DeCarlo (705) 737-0417 advocate.4kids@sympatico.ca
Trish Kitching (705) 222-9432 ktchmeifucan2002@yahoo.ca
........................................................................................................................................................
THE ALLIANCE FOR FAMILIES WITH AUTISM (AFA)
Please contact us at autismafa@yahoo.ca
Please forward articles & information to ktchmeifucan2002@yahoo.ca
Check out the news article BLOG sent out with each mailing.
http://autismnewsarticles.blogspot.com
Friday, February 29, 2008
Thursday, February 28, 2008
Autism NEWS!!! Feb 23rd - Feb 28th 2008
Autism News Articles
February 23rd , 2008-February 28th , 2008
Featuring
Conferences, Bravos and requests for
your stories
AFA (The Alliance for Families with Autism) prepares these news articles as a courtesy to your inbox and can be found archived at:
www.autismnewsarticles.blogspot.com
visit often
Send your articles to:
Ktchmeifucan2002@yahoo.ca
NOTE: AFA appreciates ALL feedback on this mailout DIRECTLY to autismafa@yahoo.ca
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From Carly Fleischman’s Mother – Tammy Starr
Hello Everyone,
ABC news received an overwhelming response to Carly's story last week as did CTV news in Canada. Both networks want to pursue this story further.
One of my points to make in doing this story about Carly's writing was that I cannot believe she is one in a million. She has had non stop ABA since she was 4 years old and we have been shoving communication aids in her face since she was 2 years old -- you can see I am frustrated by those who think this is glorified FC or that it is a "spontaneous event", although that part has much to do with how the story was told as well.
Anyway, I would really like to hear from parents and/or therapists, etc. who work with other kids like Carly --kids who cannot speak ( she has severe apraxia) but who can communicate by typing on a device. Carly prefers a laptopo but we have had several other kinds of devices before this.
I want ABC and CTV to see that she is not unique. But I will point out to them that we are different from alot of people we have heard from, is that we have been able to provide many years of intensive and expensive therapy to her. Where would she be without that?
This is obviously a very complicated topic and I won't go on further but if you do know someone who can communicate like Carly, please email me at tamstarr@rogers.com
Thanks
From a listmate
Please forward this message and post to all autism lists.
NDP MPP Andrea Horwath has been instrumental in assisting me with approaching the Ombudsman of Ontario http://www.ombudsman.on.ca/ with my request that he investigate the current autism situation in our province. I'm very happy to share with all of you that he has agreed to follow-up and contact me for additional information.
At this time, I ask that families email me with answers to the following three questions below so that I am able to communicate to the Ombudsman the crisis the children are in so that he continues his interest in the investigation.
Taline Sagharian
t.sagharian@sympatico.ca
1) Is your child on the IBI waitlist and if so, how long?
2) Is your child having to receive IBI outside of school?
3) Has your child been discharged from IBI and why?
A really great evening planned for parents, exceptional students, educators and everyone interested in students with special needs "Beating the Odds".
Please share information on this evening session with those who may have an interest. Thank you!
For Immediate Release: 02.19.08
Motivational speaker on Beating the Odds in Sudbury March 4th
A highly-acclaimed motivational speaker will be in Sudbury on Tuesday, March 4th, 2008 to talk about how life for students with disabilities does not have to be a gamble. Lesley Andrew has spoken across North America about Beating the Odds - taking responsibility for personal change and growth, overcoming obstacles, facing fears and attaining goals.
A presentation of Rainbow District School Board in partnership with the Learning Disabilities Association of Sudbury, Lesley Andrew will speak from 7 pm to 8:30 pm at Sudbury Secondary School’s Sheridan Auditorium. In lieu of admission, there will be a collection of non-perishable food items for the Sudbury Food Bank.
Lesley Andrew’s talks offer a mixture of stories, poignant memories, humour, lessons to be learned and inspiration. A well-known Canadian singer and actress, her seminars include a performance of songs.
During her presentation, she will focus on a number of topics - multiple intelligence, gifted learning disabled, handicap of giftedness, the gifts of being learning disabled, finding joy, the importance of art, creative problem solving, critical thinking skills, use of humour, developing organizational skills, time management, and finding and being a hero.
This presentation will appeal to parents/guardians, students with learning disabilities, educators, community agency workers… everyone who cares about students with special needs. Everyone is welcome to attend.
-30-
Media Contact:
Nicole Charette, Senior Advisor,
Corporate Communications and Strategic Planning,
Rainbow District School Board, 705.674.3171, ext. 7217.
charetn@rainbowschools.ca
AUTISM ONE 2008 CONFERENCE
KEYNOTE ADDRESS – JENNY McCARTHY
5 Days That Will Change Your Child's Life
The Sixth Annual Autism One Conference Returns to Chicago
Wednesday, May 21 – Sunday, May 25, Chicago, Illinois
THE REALITY OF RECOVERY Autism is a whole-body condition with many
causes and many roads to recovery. Some children develop autism from
vaccines, other children from exposure to molds, pesticides, and a
host of environmental toxins.
The pioneering efforts of parents and practitioners have brought new
appreciation about the underlying causes that create the conditions
of autism. Understanding the causes has led to safe and effective
treatments that are helping our children get better.
Main Conference: Friday, May 23 – Sunday, May 25
BRILLIANCE IN ACTION Learn at the breakthrough presentations
highlighting over 100 of the most eminent autism experts across five
tracks:
1. Biomedical Treatments
2. Behavior and Education Therapies
3. Complementary and Alternative Medicine
4. Adolescence and Adulthood
5. Government and Legal Issues
MORE REAL ANSWERS From the time you arrive to when you leave you will
be immersed in an environment of help, hope, and answers. Sign up for
a Mentor Mom who will help you 24/7, get detailed answers in the
workshops, sample, and get the recipes of special diets in the hotel
restaurant, take advanced parent training classes, and participate in
the Arts Festival classes.
NEW FOR 2008
- Seminar with Amy Yasko, PhD - Interpreting Lab Tests Seminar
- Thai Cooking as part of Special Diets
- News Desk with In-Depth Analysis
- Defeat Autism Now! Clinician Seminar - Advanced Parent Training
Pre-Conference: Wednesday, May 21 – Thursday, May 22
EMPOWERMENT FROM EDUCATION Some topics require hands-on, day-long
training. The Pre-Conference Days are rich in practical purpose and
presented in a manner to quickly bring you the knowledge to help your
child immediately.
Wednesday, May 21. The Art of Special Diets. Preparing and cooking
special diets was never so easy and delicious. Good food is the first
foundation of recovery.
Thursday, May 22. Defeat Autism Now! Clinician Seminar. Learn the
science and join the movement of practitioners who are effectively
treating autism.
Thursday, May 22. First Responders – Law enforcement officials learn
how to effectively spot and safely deal with situations involving
individuals with autism.
Thursday, May 22. Law Day. Everything IEP. Become your child's most
effective education advocate.
Thursday, May 22. What to do when a child won't eat: Feeding
Disorders and Developmental Delays.
Learn more at http://AutismOne. org or email info@... or call Ed at
714.680.0792.
Autism One is a parent-driven, charity organization helping children
and families with autism.
From a Listmate
Thursday 28th of February 2008
Rabbi Kelman honoured for lifetime of inclusion work
By FRANCES KRAFT, Staff Reporter
Thursday, 28 February 2008
TORONTO — Rabbi Joseph Kelman, right, is being honoured this week by UJA Federation of Greater Toronto for almost five decades of work on behalf of people with special needs. The catalyst for his initial foray into the field, however, was as much happenstance as it was his innate optimism.
“It’s a fantastic story,” he said in a recent interview in his study at Beth Emeth Bais Yehuda Synagogue, where he is rabbi emeritus. Fantastic as in unbelievable, not just the kind of story – instructive, a bit humorous – that the rabbi likes to share.
In 1960, when Beth Emeth was a fledgling congregation, a congregant approached Rabbi Kelman to ask whether his developmentally delayed child – in those days they used the term “mentally retarded” – would be able to have a bar mitzvah.
To this day, Rabbi Kelman finds it hard to fathom how little he knew about the issue, having had no experience with special needs children. “You could say I was naive,” he recalled. I said, ‘What are you worried about? We’ll get a private tutor.’”
The father’s initial silence was his first clue that there was more to the issue. But that child and others went on to celebrate their bar and bat mitzvahs after the rabbi instituted a bar/bat mitzvah program for children with special needs.
When the rabbi learned of another developmentally disabled boy in the neighbourhood, who was attending a non-Jewish camp, he was motivated to start a Jewish program for “retarded” children.
He contacted a downtown school for special needs children to ask for a list of their Jewish students. After being turned down twice, he called a third time to say that he didn’t want to take the school’s students away, but just wanted to start a Sunday school program. “I don’t give up,” he said, his words belying his low-key, affable manner.
“They gave me 20 names. I sent out 20 letters, and 16 came for a meeting.” That was the beginning of Kadimah, a school that provided Judaic and Hebrew education for students with developmental disabilities. “Every Sunday we would sit down and map out a program for the following Sunday,” he recalled of its early days.
A pioneer in the field, Rabbi Kelman developed a conviction early in his career that a person with a handicap is entitled to the same Jewish experience – or a similar one – as anyone else.
He went on to co-found Ezra, a program for students with learning disabilities; the Dr. Abraham Shore She’arim Hebrew Day School, to educate children with learning disabilities; and Reena, an organization that integrates adults with developmental disabilities into the community.
He chaired the North America-wide committee on special education under the auspices of the United Synagogue of Conservative Judaism for more than 30 years, and he was instrumental in having developmentally disabled children accepted into Ramah camps as part of a program now called Tikvah.
At the same time, the father of three (now a grandfather of 10), was also involved in prison and hospital chaplaincy, and was tending to the needs of his congregation as it grew from 100 families to more than 1,500 at the time of his retirement in 1997.
Kelman, who turned 80 last April, said he “sheps nachas” from his involvement with the various schools and organizations, using the Yiddish term to describe the pride and pleasure Jewish parents derive from their offspring.
At the synagogue, he still teaches, officiates at some life-cycle events and conducts High Holy Day services for non-members. He is also working on a book that will be partly autobiographical.
A recipient of numerous honours, he has travelled as far as Johannesburg to serve as a consultant on special needs.
This week’s award ceremony, featuring Ontario Lt.-Gov. David Onley as keynote speaker, was scheduled for Tuesday, Feb. 26, at the Joseph E. and Minnie Wagman Centre. The first-time awards, the Community Inclusion Awards of Excellence, are part of the federation’s broader Community Inclusion Initiative.
Rabbi Kelman’s award is for lifetime achievement. Other recipients are Honey and David Levy for hosting an integrated summer camp program and including people with special needs at their Friday night dinners; Chabad Lubavitch’s Friendship Circle, which matches teenage volunteers with children and teens who have special needs; and Camp George for its commitment to inclusion.
Google alert- a repeat
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20080212/autism_hearing_080212/20080212?hub=Health
Autism suit full of 'holes,' Ontario lawyer argues
The Canadian Press
Updated: Tue. Feb. 12 2008 8:52 AM ET
TORONTO — A $1.25-billion as-yet unapproved class-action lawsuit against seven school boards and the Ontario government over funding for specialized treatment for autistic children looks a lot like "Swiss cheese,'' a lawyer representing the province said Monday.
"It's full of all kinds of holes,'' Robert Charney told a three-judge Ontario Court of Appeal panel during a daylong hearing.
Five families of autistic children are seeking the right to sue for damages should their class-action be certified. Charney argued the claim fails to specify exactly what sort of school-based programs the appellants want, and he suggested the plaintiffs are merely looking for cash to help pay for private school.
But while the judges didn't fully agree with Charney's suggestion the claim wasn't specific enough -- even if they agreed it wasn't always clear -- they wasted no time putting pressure on plaintiff David Baker, who wants the court to approve the potentially landmark lawsuit.
It's not exactly clear why the province should be considered legally responsible for the cost of the expensive, intensive therapy the families want for their children, Justice Paul Rouleau said.
"I understand the overall picture and I understand the difficulties these children are facing, but as a judge I have to bring it back to the legal claim,'' he said.
Baker argued the government has a duty to accommodate disabled students, but discriminates against those with autism, who can't always get both their therapy and education within the public school setting.
He suggested if the therapy can't be provided in regular schools, autistic kids could be accommodated at special schools like those for the blind and deaf.
Instead, he said, many parents have had to not only purchase their own specialized therapy, they've had to send their kids to private school to get it. So far just one family has been able to convince their children's school to allow a privately funded therapist into the classroom.
Anna Martini's sons Joshua, 10, and Noah, 9, were lucky to have a principal who recognized their needs, but it came at a cost.
"I've used up all my savings, used up RRSPs, put a tenant in my basement, borrowed money, remortgaged our house and I've had fundraisers every year,'' Martini said, noting she has fought for funding to help cover the $60,000 yearly cost per child for the specialized therapy her sons need.
"I'll keep doing it if that's what needs to be for their education.''
The families are ultimately suing the province and school boards for negligence and damages for failing to provide and properly fund intensive behavioural intervention and applied behaviour analysis therapy.
Last March, Ontario Superior Court Justice Maurice Cullity sided with the provincial government in striking down several of the key claims, including negligence and damages.
But he let stand the discrimination claim, and in later dismissing the province's demand for $85,000 in legal costs, Cullity recognized the public importance of the issue, giving hope to the families that they might still have a case.
"In discrimination cases there is a provision for an award for damages that does not require proving that the government acted maliciously, and I hope the court will agree with that,'' Baker said outside the courtroom.
"The issue of damages is very important.''
The panel has reserved its decision in the case.
Based on previous court rulings, the government wants the entire case tossed.
Education Minister Kathleen Wynne said last spring the province was working to roll out applied behaviour analysis in schools across Ontario, while intensive behavioural intervention would be used outside schools.
In the fall election campaign, the Liberals pledged $10 million for schools to deliver IBI therapy if re-elected, but the plaintiffs argue the McGuinty government has broken its promise.
An estimated 50,000 children and 150,000 adults in Canada have autism, which has been the subject of several legal battles across the country, most unsuccessful.
From a listmate
Families for Effective Autism Treatments Alberta (FEAT/AB) .
FEAT/AB PRESS CONFERENCE: 11:00am Friday February 29, 2008 (TENTATIVE)
LOCATION: The Pheonix Foundation, 320 28 Street NE, Calgary, Alberta
INVITATION: Families interested in providing support at this conference are asked to contact FEAT AB
CONTACT: feat.ab@shaw.ca (PLEASE CONTACT TO CONFIRM DATE/TIME/LOCATION)
DETAILS (as per the attached document):
INFORMATION / PRESS RELEASE
Families for Effective Autism Treatments of Alberta (FEAT/AB) is a not-for-profit grassroots organization dedicated to supporting families and individuals with Autism Spectrum Disorders throughout the province of Alberta. Issues and concerns brought to the attention of FEAT/AB are common place to areas such as Lethbridge, Fort MacLeod, Banff, Calgary, Red Deer, Edmonton, Peace River, Grande Cache, Fort MacMurray, and others, and are not isolated situations as described by the Alberta Government and reported in the media.
The FSCD Program in the Alberta Service Regions, as mandated by the FSCD Act, Regulations, and Policies, has the purpose of assisting families in meeting the extraordinary expenses involved in helping their disabled children, regardless of diagnosis, move forward and make gains through their childhood years, from birth to age 18, but they are clearly not fully meeting this legislated responsibility. The value of families and disabled children are devalued and undermined through the misuse of the legislation.
In fact, those children with the most severe disabilities, clearly eligible for “Specialized Services for Children with severe disabilities”, are the ones most vulnerable to the arbitrary and discriminatory practice of an ineffective system. This transcends across all disability groups, including Autism Spectrum Disorders.
In these times of unprecedented provincial wealth, successive budgetary surpluses and even recent promises by the government of $120+ billion in spending infusions for essential services, FEAT/AB finds it unfathomable that families are told they will no longer receive the supports entitled by law. This also contravenes the FSCD Act, which clearly identifies the individual needs of child as paramount, not how much that department has allocated in their budget.
FEAT/AB calls on the Alberta government and Alberta Children’s Services to immediately suspend the Multi-Disciplinary Team (MDT) process used by the FSCD Program to often withhold adequate and appropriate funding allocations to families with disabled children, as recommended by registered attending physicians and clinical professionals who work with these children.
FEAT/AB calls on the Alberta government and Alberta Children’s Services and the FSCD Program to ensure adequate / appropriate bridge funding allocations to families with disabled children in the interim, during a full, in depth investigation of current inefficiencies.
FEAT/AB calls on the Alberta government and Alberta Children’s Services and the FSCD Program to investigate the unlawful, arbitrary and discriminatory implementation of the MDT process, which has been used in a manner that is disrespectful and devaluing of families and children with disabilities.
FEAT/AB calls on the Alberta government and Alberta Children’s Services to broaden the scope of the Children’s Advocate to ensure the needs of the disabled child are also being met and enforced.
FEAT/AB calls on the Alberta government and Alberta Children’s Services to involve FEAT/AB and/or Autism Society of Alberta (ASA) appointed representatives, as well as representative form other disability support groups affected by these inequities, to contribute to a meaningful collaboration towards establishing policies, guidelines, and resolutions that benefit disabled children more fully.
Children with Autism Spectrum Disorders and children with other disabling conditions have been shown to benefit from consistent involvement in programming framed in established treatment modalities, which can eventually lead to them becoming contributing adult members of society (tax payers!). Paying now rather then paying later is just sound economics.
Disabled children and their families can only benefit from funding allocations through the FSCD Program for a short time compared to how long they will be adults with disabilities. It is crucial that the flawed MDT process be suspended and thoroughly investigated to determine its legitimacy as described within the FSCD Act, Regulations and Policies.
This deserves to be done while our children are still children and they can still benefit from a unique government program that was initially meant to be so much more and that could still accomplish so much more for disabled Alberta children and their families .
For further details please call FEAT/AB at 403-520-7424.
Thank you,
Guy Emond, President
Families for Effective Autism Treatments of Alberta
AFA Posted Susan Sherring’s Articles in previous messages.
Now she is being honoured. Bravo Susan.
Here is the link to the four part series:
http://ottsun.canoe.ca/News/Features/2007/12/02/4701822-sun.html
From a listmate
Sun columnist honoured
Sun columnist Susan Sherring has won the Joan Gullen Media Award for her four-part series on autism and its impact, both emotional and financial, on families.
Named after Joan Gullen, a distinguished local social worker who has been recognized by the governor general, the award honours excellence in the exploration and reporting of significant social issues affecting the community.
"As a local reporter in Ottawa for many years, I've seen firsthand the kind of good work and dedication of community activist Joan Gullen," said Sherring. "It's really very meaningful for me to receive an award named after a woman like her."
Sherring's interest in autism began years ago when a close friend from high school, Alan Roberts, told her his son had been diagnosed. At the time, she had no idea what that meant.
When she was the Sun's Page Six columnist, Sherring covered many events sponsored by Children At Risk -- a group dedicated to making the lives of children with autism a little bit better -- and learned more about the subject.
Years later, Sherring says there are still many misconceptions about autism.
"I have always wanted the opportunity to explore autism further, and this series gave me that opportunity."
The series was published in December, and explores the complex issue from the family unit to the political realm.
Sherring plans to donate her prize money to Children At Risk.
"We're very proud of Sue," said editor-in-chief Mike Therien. "This is a great example of community and social journalism."
This boy has won a Champion’s for Children Award! He is truly a champion in our community!
Way to go Matteo
Here is his speech. He spoke to the SEAC Committee at the Rainbow District School Board about what it is like to have Autism. My son Morgan, was his inspiration to finally come out and speak, for him and others like himself with no voice. Bravo.
Hi,
My name is Matteo, I am 9years old and I'm autistic which is why I am here today. I like astronomy, reading, math, science and history.
I am fascinated by Albert Einstein, Galileo and Leonardo Da Vinci. When I grow up I want to be a medical scientist and an astronomer. My hero is Albert Einstein. Did you know that he was autistic? He used to always ask questions in school even though it was forbidden. One day his father asked the principal what job would he be good at doing? The principal responded it doesn't matter because he will never be a success at anything. Einstein didn't eat right, he didn't talk until the age of 3 or 4 and his parents did whatever they could to keep him in school.
At times Einstein had bad behavior and he was expelled at school because of his constant questions. I can relate to Einstein because I constantly ask questions, I didn't talk until I was almost 4 years old, sometimes I get frustrated with people that don't answer my constant questions or enjoy listening to me talk about my science stuff. I often get bullied because I seem to be a little different.
But actually I'm not that different from other kids. I go to regular school, I have to do my homework, I take swimming lessons, I like to play with friends and I still have to be nice to my bratty sister. I think people should treat autistic people the same as everyone else because everyone is a little different in their own way.
I still have emotions like everyone else. After all – look at Einstein. Thank goodness his parents helped him the best they could. Look what he has done for the world. Who knows, maybe I can be the next Einstein or one of my autistic friends could be the person that will make an important discovery for the future. I don't want to change being autistic because then I wouldn't be me - so all I'm saying is give autistic kids a chance!
Thanks!
From a listmate
Increasing the chance of success
The media is filled with success stories of children “recovering” from autism. For the parents whose children remain on the spectrum, these stories cause as much hope as they do despair. Parents are often left feeling like they’ve failed their child. Never ending questions and thoughts plague their minds. “Maybe we did too little ABA. Maybe we did too much ABA. We should have … (Read more)
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Natural Learning Concepts
http://www.nlconcepts.com
From a listmate and AO
“Proceeding with Compassion While Awaiting the Evidence. Psychopharmacological Approaches to Autism Spectrum Disorder”
With Dr. Bob King
Dr. King will speak about Aspergers and Autism's triad of impairments. He asks the question if ASD is related to psychiatric disorders, anxiety disorders, sleep disorders, developmental disabilities, and behavioral disorders. He will focus on psychiatric disorders and provide information about pharmacological treatments available.
In this presentation, you will learn about:
• Impairments of individuals with ASD
• Possible diagnosis that may co exist
• Pharmacological Treatments
Join Dr. King and Autism Ontario – North Bay and Area Chapter for an informative evening out.
Thursday, March 6th, 6:00 pm
Community Room in the Northgate Square Mall (upstairs from Tim Horton’s)
email: autism.support@cogeco.ca
About the speaker: Dr. Robert (Bob) Joseph King - is a Psychiatrist with the Northeast Mental Health Center. Dr. King founded the Developmental Disabilities Program of the North Bay Psychiatric Hospital in 1993 and is a consulting psychiatrist with Kerry's Place Autism Services. He is an international speaker and has authored and co-authored several works on ASD and mental health.
From a listmate
Autistic kids need more gov't help
The Edmonton Journal
Monday, February 25, 2008
I am a parent with a child with autism. In the past few years, I have seen lots of families have unpleasant experiences with Family Support for Children with Disabilities (FSCD).
Under the FSCD regulations, a child must be severely behind in at least two of five functional areas before he or she qualifies for specialized services. The five areas are behaviour, communication and socialization skills, physical and motor development, cognitive abilities and self-help skills and adaptive functioning.
A multidisciplinary team (MDT) appointed by FSCD will decide if the child's condition is severe enough for services. The MDT consists of three clinical professionals -- a psychologist, speech language pathologist and occupational therapist. Most parents find this process problematic because the MDT, which makes such an important decision for the family, has never met the child.
The MDT's understanding of the child is based on reports submitted by the clinical professionals who work directly with the child. If the MDT decides to deny service, it will say the child cannot achieve any more, although the clinical reports may contradict that.
The parents then face a lengthy and stressful appeal process. FSCD will not reimburse the parents for any costs incurred, even if the parents eventually win the appeal.
Last year, our therapy hours for the whole year were split into two contracts due to an outstanding appeal and resulting discontinuation of services in the middle of the year. We ended up having lots of unused hours in the first 10 months and not enough hours for the last two months. FSCD refused to pay for the excess hours needed in the last two months, although the actual hours used were well below the total hours approved for the whole year. For families who cannot afford to pay for extra hours, the child will not have enough services for part of the year, which may also cause regression.
Eleanor Mui, Edmonton
_______________________________________
Autistic kids not getting help they need
The Edmonton Journal
Tuesday, February 19, 2008
A recent mailout from the PC Party of Alberta states that Premier Ed Stelmach supports the Family Support for Children with autism spectrum disorder.
Unfortunately the Family Support for Children with Disabilities Act leaves many children with autism without the services that they require.
One treatment option is applied behaviour analysis, which is the only treatment available in our area -- Lethbridge. Research suggests that 40 hours of therapy per week will produce best results and that we will not know if fewer than 40 hours of therapy per week will work unless we try it.
Not a single family in the Lethbridge area is receiving 40 hours of therapy for their child with autism. One family receives 35 hours and the rest fewer than 30 hours per week.
Families of children with autism have to fight FSCD to get the therapy their child needs. The appeal process can be costly for families, many of whom have already given up one income to have a parent stay at home with the child.
FSCD is not working for families in this province. Families are not supported in their attempts to raise a child with autism.
Our family has been affected by autism twice.
In September, our four-year-old son's therapy was cut to 13 hours per week and he began regressing.
A certified behavioural psychologist has confirmed the regression and recommended his therapy be increased, but six months later, our child is still regressing while we wait for a response to our appeal, which is not expected until May 19 -- nine months after his therapy was cut.
Our other son, who is three, receives 15 hours of therapy per week. Whatever happened to early intensive intervention?
It seems as if FSCD regards these children as lower-class citizens and doubts what they can do.
By giving my four-year-old only 13 hours per week of therapy, FSCD and their expert multidisciplinary team are saying he cannot achieve more. He has a goal set yearly. By the end of this year, he will know only 47 items; non-autistic children his age typically know 10,000.
Because his hours with his therapist are limited, that is all he is able to learn.
Children with autism spectrum disorder are going to have to live off tax dollars their entire life if the government doesn't invest in appropriate support for them early in life.
Wouldn't you want to give these children the best opportunities, to possibly be active participants in society and become tax payers themselves? Instead we are only giving them good -- not best -- opportunities, and they will be a cost to the taxpayer for many years to come.
Allison Pike,
Lethbridge
From a listmate
The Huffington Post
David Kirby
Government Concedes Vaccine-Autism Case in Federal Court - Now What?
Posted February 25, 2008 | 12:42 PM (EST)
________________________________________
After years of insisting there is no evidence to link vaccines with the onset of autism spectrum disorder (ASD), the US government has quietly conceded a vaccine-autism case in the Court of Federal Claims.
The unprecedented concession was filed on November 9, and sealed to protect the plaintiff's identify. It was obtained through individuals unrelated to the case.
The claim, one of 4,900 autism cases currently pending in Federal "Vaccine Court," was conceded by US Assistant Attorney General Peter Keisler and other Justice Department officials, on behalf of the Department of Health and Human Services, the "defendant" in all Vaccine Court cases.
The child's claim against the government -- that mercury-containing vaccines were the cause of her autism -- was supposed to be one of three "test cases" for the thimerosal-autism theory currently under consideration by a three-member panel of Special Masters, the presiding justices in Federal Claims Court.
Keisler wrote that medical personnel at the HHS Division of Vaccine Injury Compensation (DVIC) had reviewed the case and "concluded that compensation is appropriate."
The doctors conceded that the child was healthy and developing normally until her 18-month well-baby visit, when she received vaccinations against nine different diseases all at once (two contained thimerosal).
Days later, the girl began spiraling downward into a cascade of illnesses and setbacks that, within months, presented as symptoms of autism, including: No response to verbal direction; loss of language skills; no eye contact; loss of "relatedness;" insomnia; incessant screaming; arching; and "watching the florescent lights repeatedly during examination."
Seven months after vaccination, the patient was diagnosed by Dr. Andrew Zimmerman, a leading neurologist at the Kennedy Krieger Children's Hospital Neurology Clinic, with "regressive encephalopathy (brain disease) with features consistent with autistic spectrum disorder, following normal development." The girl also met the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV) official criteria for autism.
In its written concession, the government said the child had a pre-existing mitochondrial disorder that was "aggravated" by her shots, and which ultimately resulted in an ASD diagnosis.
"The vaccinations received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder," the concession says, "which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of ASD."
This statement is good news for the girl and her family, who will now be compensated for the lifetime of care she will require. But its implications for the larger vaccine-autism debate, and for public health policy in general, are not as certain.
In fact, the government's concession seems to raise more questions than it answers.
1) Is there a connection between vaccines, mitochondrial disorders and a diagnosis of autism, at least in some cases?
Mitochondria, you may recall from biology class, are the little powerhouses within cells that convert food into electrical energy, partly through a complex process called "oxidative phosphorylation." If this process is impaired, mitochondrial disorder will ensue.
The child in this case had several markers for Mt disease, which was confirmed by muscle biopsy. Mt disease is often marked by lethargy, poor muscle tone, poor food digestion and bowel problems, something found in many children diagnosed with autism.
But mitochondrial disorders are rare in the general population, affecting some 2-per-10,000 people (or just 0.2%). So with 4,900 cases filed in Vaccine Court, this case should be the one and only, extremely rare instance of Mt disease in all the autism proceedings.
But it is not.
Mitochondrial disorders are now thought to be the most common disease associated with ASD. Some journal articles and other analyses have estimated that 10% to 20% of all autism cases may involve mitochondrial disorders, which would make them one thousand times more common among people with ASD than the general population.
Another article, published in the Journal of Child Neurology and co-authored by Dr. Zimmerman, showed that 38% of Kennedy Krieger Institute autism patients studied had one marker for impaired oxidative phosphorylation, and 47% had a second marker.
The authors -- who reported on a case-study of the same autism claim conceded in Vaccine Court -- noted that "children who have (mitochondrial-related) dysfunctional cellular energy metabolism might be more prone to undergo autistic regression between 18 and 30 months of age if they also have infections or immunizations at the same time."
An interesting aspect of Mt disease in autism is that, with ASD, the mitochondrial disease seems to be milder than in "classic" cases of Mt disorder. In fact, classic Mt disease is almost always inherited, either passed down by the mother through mitochondrial DNA, or by both parents through nuclear DNA.
In autism-related Mt disease, however, the disorder is not typically found in other family members, and instead appears to be largely of the sporadic variety, which may now account for 75% of all mitochondrial disorders.
Meanwhile, an informal survey of seven families of children with cases currently pending in Vaccine Court revealed that all seven showed markers for mitochondrial dysfunction, dating back to their earliest medical tests. The facts in all seven claims mirror the case just conceded by the government: Normal development followed by vaccination, immediate illness, and rapid decline culminating in an autism diagnosis.
2) With 4,900 cases pending, and more coming, will the government concede those with underlying Mt disease -- and if it not, will the Court award compensation?
The Court will soon begin processing the 4900 cases pending before it. What if 10% to 20% of them can demonstrate the same Mt disease and same set of facts as those in the conceded case? Would the government be obliged to concede 500, or even 1,000 cases? What impact would that have on public opinion? And is there enough money currently in the vaccine injury fund to cover so many settlements?
When asked for a comment last week about the court settlement, a spokesman for HHS furnished the following written statement:
"DVIC has reviewed the scientific information concerning the allegation that vaccines cause autism and has found no credible evidence to support the claim. Accordingly, in every case under the Vaccine Act, DVIC has maintained the position that vaccines do not cause autism, and has never concluded in any case that autism was caused by vaccination."
3) If the government is claiming that vaccines did not "cause" autism, but instead aggravated a condition to "manifest" as autism, isn't that a very fine distinction?
For most affected families, such linguistic gymnastics is not so important. And even if a vaccine injury "manifested" as autism in only one case, isn't that still a significant development worthy of informing the public?
On the other hand, perhaps what the government is claiming is that vaccination resulted in the symptoms of autism, but not in an actual, factually correct diagnosis of autism itself.
4) If the government is claiming that this child does NOT have autism, then how many other children might also have something else that merely "mimics" autism?
Is it possible that 10%-20% of the cases that we now label as "autism," are not autism at all, but rather some previously undefined "look-alike" syndrome that merely presents as "features" of autism?
This question gets to the heart of what autism actually is. The disorder is defined solely as a collection of features, nothing more. If you have the features (and the diagnosis), you have the disorder. The underlying biology is the great unknown.
But let's say the government does determine that these kids don't have actual "autism" (something I speculated on HuffPost a year ago). Then shouldn't the Feds go back and test all people with ASD for impaired oxidative phosphorylation, perhaps reclassifying many of them?
If so, will we then see "autism" cases drop by tens, if not hundreds of thousands of people? Will there be a corresponding ascension of a newly described disorder, perhaps something like "Vaccine Aggravated Mitochondrial Disease with Features of ASD?"
And if this child was technically "misdiagnosed" with DSM-IV autism by Dr Zimmerman, how does he feel about HHS doctors issuing a second opinion re-diagnosis of his patient, whom they presumably had neither met nor examined? (Zimmerman declined an interview).
And along those lines, aren't Bush administration officials somewhat wary of making long-distance, retroactive diagnoses from Washington, given that the Terry Schiavo incident has not yet faded from national memory?
5) Was this child's Mt disease caused by a genetic mutation, as the government implies, and wouldn't that have manifested as "ASD features" anyway?
In the concession, the government notes that the patient had a "single nucleotide change" in the mitochondrial DNA gene T2387C, implying that this was the underlying cause of her manifested "features" of autism.
While it's true that some inherited forms of Mt disease can manifest as developmental delays, (and even ASD in the form of Rhett Syndrome) these forms are linked to identified genetic mutations, of which T2387C is not involved. In fact little, if anything, is known about the function of this particular gene.
What's more, there is no evidence that this girl, prior to vaccination, suffered from any kind of "disorder" at all- genetic, mitochondrial or otherwise. Some forms of Mt disease are so mild that the person is unaware of being affected. This perfectly developing girl may have had Mt disorder at the time of vaccination, but nobody detected, or even suspected it.
And, there is no evidence to suggest that this girl would have regressed into symptoms consistent with a DSM-IV autism diagnosis without her vaccinations. If there was such evidence, then why on earth would these extremely well-funded government attorneys compensate this alleged injury in Vaccine Court? Why wouldn't they move to dismiss, or at least fight the case at trial?
6) What are the implications for research?
The concession raises at least two critical research questions: What are the causes of Mt dysfunction; and how could vaccines aggravate that dysfunction to the point of "autistic features?"
While some Mt disorders are clearly inherited, the "sporadic" form is thought to account for 75% of all cases, according to the United Mitochondrial Disease Foundation. So what causes sporadic Mt disease? "Medicines or other toxins," says the Cleveland Clinic, a leading authority on the subject.
Use of the AIDS drug AZT, for example, can cause Mt disorders by deleting large segments of mitochondrial DNA. If that is the case, might other exposures to drugs or toxins (i.e., thimerosal, mercury in fish, air pollution, pesticides, live viruses) also cause sporadic Mt disease in certain subsets of children, through similar genotoxic mechanisms?
Among the prime cellular targets of mercury are mitochondria, and thimerosal-induced cell death has been associated with the depolarization of mitochondrial membrane, according to the International Journal of Molecular Medicine among several others. (Coincidently, the first case of Mt disease was diagnosed in 1959, just 15 years after the first autism case was named, and two decades after thimerosal's introduction as a vaccine preservative.)
Regardless of its cause, shouldn't HHS sponsor research into Mt disease and the biological mechanisms by which vaccines could aggravate the disorder? We still do not know what it was, exactly, about this girl's vaccines that aggravated her condition. Was it the thimerosal? The three live viruses? The two attenuated viruses? Other ingredients like aluminum? A combination of the above?
And of course, if vaccine injuries can aggravate Mt disease to the point of manifesting as autism features, then what other underlying disorders or conditions (genetic, autoimmune, allergic, etc.) might also be aggravated to the same extent?
7) What are the implications for medicine and public health?
Should the government develop and approve new treatments for "aggravated mitochondrial disease with ASD features?" Interestingly, many of the treatments currently deployed in Mt disease (i.e., coenzyme Q10, vitamin B-12, lipoic acid, biotin, dietary changes, etc.) are part of the alternative treatment regimen that many parents use on their children with ASD.
And, if a significant minority of autism cases can be linked to Mt disease and vaccines, shouldn't these products one day carry an FDA Black Box warning label, and shouldn't children with Mt disorders be exempt from mandatory immunization?
8) What are the implications for the vaccine-autism debate?
It's too early to tell. But this concession could conceivably make it more difficult for some officials to continue insisting there is "absolutely no link" between vaccines and autism.
It also puts the Federal Government's Vaccine Court defense strategy somewhat into jeopardy. DOJ lawyers and witnesses have argued that autism is genetic, with no evidence to support an environmental component. And, they insist, it's simply impossible to construct a chain of events linking immunizations to the disorder.
Government officials may need to rethink their legal strategy, as well as their public relations campaigns, given their own slightly contradictory concession in this case.
9) What is the bottom line here?
The public, (including world leaders) will demand to know what is going on inside the US Federal health establishment. Yes, as of now, n=1, a solitary vaccine-autism concession. But what if n=10% or 20%? Who will pay to clean up that mess?
The significance of this concession will unfortunately be fought over in the usual, vitriolic way -- and I fully expect to be slammed for even raising these questions. Despite that, the language of this concession cannot be changed, or swept away.
Its key words are "aggravated" and "manifested." Without the aggravation of the vaccines, it is uncertain that the manifestation would have occurred at all.
When a kid with peanut allergy eats a peanut and dies, we don't say "his underlying metabolic condition was significantly aggravated to the extent of manifesting as an anaphylactic shock with features of death."
No, we say the peanut killed the poor boy. Remove the peanut from the equation, and he would still be with us today.
Many people look forward to hearing more from HHS officials about why they are settling this claim. But whatever their explanation, they cannot change the fundamental facts of this extraordinary case:
The United State government is compensating at least one child for vaccine injuries that resulted in a diagnosis of autism.
And that is big news, no matter how you want to say it.
David Kirby is the author of "Evidence of Harm - Mercury in Vaccines and the Autism Epidemic, A Medical Controversy" (St. Martins Press 2005.)
From a listmate
Deadline fast approaching!
Two Presentations by James Partington, PhD, BCBA
Take advantage of this opportunity to see an internationally renowned behavior analyst in Vancouver.
Earn BCBA and BCABA Continuing Education Credit!
________________________________________
Day One: Understanding and Changing Challenging Behaviors for Young Children with Autism: Practical Advice for Parents and Professionals
This day is designed primarily for parents, instructional assistants, and in-home tutors. The focus is on how to use effective behavioral language teaching techniques to identify the behavioral barriers that prevent your child from engaging in everyday family and school activities (e.g., sitting at the table and eating with others, going to the grocery store without a tantrum, toileting issues, etc.). more Day Two: Designing, Implementing and Troubleshooting Verbal Behavior–ABA Programs
This workshop is designed primarily to provide professionals who are familiar with the ABLLS–R with skills to analyze problems with the development of certain skill areas (e.g. spontaneous use of language and social interaction skills) and to provide them with strategies for addressing those problems. Discussions regarding the analysis of problems in the acquisition of skills, evaluation of educational priorities, and determination of IEP objectives for several students will be conducted. more
________________________________________
Day One: (from left column above) Vancouver – February 29, 2008
Parents frequently have concerns about the behaviors of their child with ASD–behaviors that are complicated by the fact that the child often doesn't understand requests. Another critical factor is that many of these children are not motivated by the types of praise used to teach typically developing children how to behave. This workshop specifically addresses practical issues and will give methods for analyzing problem situations and developing strategies to solve those problems.
Participants will learn how to:
• Identify the basic behavioral principles used to analyze both appropriate and undesired behavior.
• Increase appropriate behavior by developing positive instructional control, and teaching alternative behaviors.
• Observe behavior to determine why a behavior is or is not occurring and its probable function(s).
• Structure situations to encourage desired behavior and avoid unwanted behavior.
• Use simple but effective data collection procedures.
View Registration Form
________________________________________
Day Two: (from right column above) Vancouver – March 1 , 2008
This workshop is designed primarily to provide professionals who are familiar with the ABLLS–R with skills to analyse problems with the development of certain skill areas (e.g. spontaneous use of language and social interaction skills) and to provide them with strategies for addressing those problems. Discussions regarding the analysis of problems in the acquisition of skills, evaluation of educational priorities, and determination of IEP objectives for several students will be conducted.
During the workshop, participants will review data from students' ABLLS, review proposed learning objectives, and observe videotapes of learner skills. The video reviews will include both early phases of assessment and intervention and later phases of treatment interventions. Pre- and post-ABLLS scores of the learners' performance will be reviewed.
Participants will learn how to:
• Identify at least two common problems that are related to the failure of students to make adequate progress in the development of critical learner skills.
• Identify how motivational issues are related to the acquisition of language skills.
• Describe how social reinforcement variables are related to the development of spontaneous verbal behavior.
• Identify how to directly shape critical language and social interaction skills.
View Registration Form
________________________________________
Dr. Partington is the Director of Behavior Analysts, Inc., in Pleasant Hill, California. He is a licensed psychologist and a board certified behavior analyst (BCBA), and has more than 35 years experience in intervention with children who are experiencing language delays as a result of autism-related disorders. Dr. Partington presents internationally on autism-related topics and co-authored with Dr Mark L. Sundberg Teaching Language to Children with Autism or Other Developmental Disabilities. Recently he has published the updated Assessment of Language and Learning Skills Revised (the ABLLS–R).
Important note for BCBAs and BCABAs: These workshops qualify as approved Continuing Education Units (type II CEU, six hours per workshop). In order to receive a continuing education certificate, participants must attend the entire workshop (sign-in and sign-out required) and complete a course evaluation form. Participants who arrive late or leave early will not be eligible for partial CEU credit. Certificates will be provided upon successful completion of the workshop, and the payment of an additional $30 US fee to Behavior Analysts, Inc. for each six hour day. Participants who wish to take advantage of this should bring credit cards for the certification fee. ACT staff will handle paperwork and the sign-in process on behalf of Behavior Analysts, Inc., but are not a party to the transaction.
________________________________________
Online Registration: Go to www.actcommunity.net and select the "Log In" link at top right of the ACT homepage.
Bursaries: If you are low income and / or traveling to attend a workshop, ACT has some bursary funds available. Please apply for a bursary before registering. See website or contact ACT for more information.
Support & Information: ACT’s team of Information Officers can provide support and information on a wide range of autism-related topics and can advise on whether a workshop is appropriate for your needs. Contact ACT by email at info@actcommunity.net, or by phone at 604-205-5467 or 866-939-5188.
Please do not reply to this email; we cannot receive messages sent to this address.
________________________________________
From a listmate
AWESOME Autism Products!
(This received in late Feb. Maybe they will honour the Feb specials?
Dear Parents:
Let me know if you are interested in any one of these two items.
The weighted blanket is new and better quality than others previously offered.
The Chewy tubes-self explanatory.
To read it in english-click on the top where it says "read in English" in blue. okay?
Thanks
-Tanya: northernautism@personainternet.com
Every child with autism is a shining star. Look until you can see the light within........
Autism* Aspergers Digest
Tanya LV Dixon
Northern Autism Consulting Services
Office: (705) 561-8825
From: karine@fdmt.ca
Lire cette infolettre dans votre fureteur — Read it in English
Un mot de la part de Karine
Super Chew
Fax: (514)935-9768 - thenderson@giantstepsmontreal.com
FDMT Enterprises
2211, de la Metropole
Longueuil, QC J4G 1S5
Canada Tel.: 450-321-5500
Sans frais: 1 (866) 465-0559
Read it your browser — Lire cette infolettre en français
FDMT NEWSLETTER — FEBRUARY 2008
A word from Karine
Dear customer,
Always seeking for new products, I’m proud to present you two new wonderful items, this month.
Our new weighted blanket “Creation Messim”, stuffed with buckwheat hulls is now available.
Weighted blankets are a powerful & effective tool for the sensory challenged. Helps unwind, relax, and calm before sleep as well as during the day. The proprioceptive input and deep pressure provided by the weighted blanket can calm and improve attention & focus, improve body awareness & decrease sensory seeking behaviours.
The New “Super Chew”, from the Chewy Tubes ™ Company are safe and effective tools for practicing biting and chewing skills, feature easy-grasp, closed loop handles, for little hands.
Sincerely,
Karine Gagner dir.
February Specials
Création Messim Weighted Blanket
Blanket filled with buckwheat hulls. Waterproof cover, machine washable. Great for hot dog or sandwich game the client is the topping and the blanket is the bread ! Dimension : 48’’ X 96’’ 36 lb
Regular : $269.95
Special : $219.95
You save 19 %
Until February 29, 2008
only for Internet orders
Limited quantities
Super Chew
Chewy Tubes Super Chew ® are offered to children and adults as a safe and effective tool for practicing biting and chewing skills. They give a tactile and proprioceptive input. Latex and phthalate free.
Feature easy-grasp, closed loop handles, for little hands.
Regular : 5,95 $ Special : 5,00$ You save 19 %
Until February 29, 2008 only for Internet orders Limited quantities
Upcoming Event
Giant Steps Lecture Series 2007-2008
Visual Strategies for Teaching
Students with ASD to Read
Leslie Broun M.Ed. March 18th 2008 9am-4pm
For more information
please call Thomas Henderson (514) 935-1911 x37
fax: (514)935-9768 - thenderson@giantstepsmontreal.com
FDMT Enterprises
2211, de la Metropole
Longueuil, QC J4G 1S5
Canada
Tel.: 450-321-5500
Toll free : 1 (866) 465-0559
From a listmate
In January of 2008, researchers at the California Department of Public Health published a paper in the Archives of General Psychiatry that was widely reported to show that vaccines play no role in autism. Noted researcher Boyd Haley has graciously given ARRI permission to publish his response to this study.
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RESPONSE TO 2008 R. SCHECHTER AND J. GRETHER PUBLCIATION “CONTINUING INCREASES IN AUTISM REPORTED TO CALIFORNIA'S DEVELOPMENTAL SERVICES SYSTEM” WHICH ADDRESSES CALIFORNIA DEPARTMENT OF DEVELOPMENT SERVICES DATA ON EVALUATION OF THE RELATIONSHIP BETWEEN THIMEROSAL AND AUTISM
8 January 2008
by Boyd Haley, Professor of Chemistry, University of Kentucky, Lexington, KY
We should all consider that there are two top priorities in the vaccine/autism issue every American should be concerned with. We need to develop a safe vaccination program, and we need to find the cause of autism and eliminate it if possible. I have been a strong proponent of investigating thimerosal as the casual agent for autism spectrum disorders based on the biological science that shows thimerosal to be incredibly toxic, especially to infants. I know of nothing remotely as toxic as thimerosal that numerous infants would be exposed to before 3 to 4 years of age. Below I present several comments regarding this issue and the 2008 Schechter-Grether study that I think are relevant. Mainly, while the Schechter-Grether study appears to be a well done study it suffers from the fatal flaw of assuming that thimerosal was removed to safe levels in vaccines by 2002. They also cut a fine edge as to time when a significant drop in autism rates would be expected. Further, no study exists that proves our vaccine schedule alone is safe, let alone the current one that still exposes infants to thimerosal, a concern they do not address. The alarming concern is that these authors seem more involved at providing material saying thimerosal is safe than they are concerned with the obvious fact, openly presented in their own data on autism rates, which strongly indicated that increased rates of autism started with the CDC mandated vaccine program. References to support the comments are readily available in many recent publications.
1. Autism was not a known, described illness until about 1941-3, 8 to 10 years after the introduction of thimerosal and similar organic thiol-mercury compounds in biological mixtures used in medicine and other areas. This argues against autism being a genetic illness.
2. In 1977, 10 of 13 infants treated in a single hospital by topical application of thimerosal for umbilical cord infections died of mercury toxicity. This same topical was used on adolescents without obvious ill effects which strongly supports the concept that infants are very susceptible to thimerosal toxicity.
3. The recent increase (starting about 1990) of autism spectrum disorders correlated well with the advent of the CDC mandated vaccine program which increased thimerosal exposures with increased vaccinations. Due to its toxicity, thimerosal would have to be suspect for causing autism.
4. As expected by science, extensive searching for a genetic cause of autism has not turned up a significant find that would explain the recent increased rate in autism. The latest genetic find, at best, might explain 0.5% of autism causation. Most agree that a genetic predisposition is likely (like those that lead to low glutathione levels), but that a toxic exposure is absolutely needed. Consider also, that this increased toxic exposure would have had to occur in all 50 states at about the same time as all states have reported similar increases in autism rates. Only something like the government recommended vaccine program fits this need for a time dependent, uniform exposure of a toxin throughout all the states.
5. In the Schechter-Grether study it is implied or assumed that all thimerosal containing vaccines were gone by the end of 2002 due to their expiration dates. I don't think this is a valid assumption. I have talked to mothers who asked to see the vaccine inserts as late as 2004 and found thimerosal present as a preservative in infant vaccines being used in certain clinics. Also, in 2004 the influenza vaccine was recommended by the CDC for infants 6 months of age and older. It would appear as if a thimerosal free vaccine time-frame would be very hard to identify, if one ever existed. I have read that the average age of autism diagnosis is near 44 months of age. Therefore, while it does seem reasonable to expect a decrease in autism after 4 to 5 years of complete thimerosal removal, assuming a consistent diagnostic protocol was used, it appears this has not been accomplished. This means the Schechter-Grether study is likely somewhat premature in reaching the conclusions reported in that enough time has not passed for the expected decrease to occur and that they were quite optimistic in identifying the dates of thimerosal reduction and underestimate exposures occurring between 2002-4.
6. If, indeed, the complete removal of thimerosal from vaccines was not followed in an appropriate time by a decrease in autism then this would be solid proof that thimerosal was not causal for autism. However, thimerosal has not been completely removed from vaccines and thimerosal used at the original levels in the manufacturing of these vaccines with “trace” amounts left in the vaccines when bottled. I don't know what level “trace” is since it is not a term used in science to describe an actual amount. Some called the 12.5 micrograms mercury in the older vaccines a “trace” amount. Bottom line, the infants are still getting some level of thimerosal, a “trace” amount that is free and an amount of ethylmercury that is bound to the proteins that induce the immune response. If vaccines are causing autism and it appears this is a strong possibility based on the California data and, if removing thimerosal added as a preservative really does not reduce the autism rate then the causation is much more complex.
Consider the possibilities that:
A. Autism may be caused by a thimerosal modified protein that sets off an immune response or causes some other biological reaction that can cascade with injurious effects. Since the vaccines are manufactured with thimerosal present in abundance it is quite likely that any cysteine containing proteins would be modified with ethylmercury. Removal of most of the free thimerosal (or just not adding it) would not decrease the level of any toxic modified protein produced during the vaccines production that might be causal. Removing the thimerosal added as a preservative would not decrease the amount of this ethylmercury modified protein in those vaccines with “trace” thimerosal levels.
B. That autism could be caused in susceptible individuals by very low thimerosal or ethylmercury modified protein exposures due to their genetic susceptibility or other factors (general health, gender). In this scenario the higher thimerosal exposures are not required and the induction of autism is not thimerosal concentration dependent at the old and new thimerosal vaccine levels, but just requires a significant exposure level that is met by the vaccines containing the lower “trace” amounts of thimerosal and past thimerosal levels in vaccine production processes. Bottom line, if genetic susceptibility is involved then causation of autism may not increase linearly with increased thimerosal exposure. Causation may only require low thimerosal exposure or exposure to modified proteins. It is possible that the reduction of thimerosal as in the “trace” was just not enough to produce a safe vaccine.
Not all toxins work like alcohol and the old “dose makes the toxin” is not always correct. As long as they are used, the mere use of “trace” thimerosal in vaccines along with higher levels in the flu vaccine will always prevent a conclusive answer to thimerosal's involvement in autism causation. What should be studied is the “no exposure” versus the “exposed” populations with regard to autism rates.
7. If indeed autism is rare among the non-vaccinated Amish populations, as reported by Dan Olmstead, I find it an amazingly oversight that the CDC and others responsible for infant health do not fund a study in this area. This study could go both ways, if the Amish have autism rates identical with the rest of the population the argument would be over---neither vaccines nor thimerosal would be causal for autism, and I personally would argue in this direction. If, however, the autism rates in the Amish are exceptionally low then vaccines would have to be considered as a prime suspect in causation with the presence of the highly toxic thimerosal the main suspect.
If the results in the 2008 Schechter-Grether study hold up with time, and complete removal of thimerosal does not cause a drop in autism rates and the autism rates in non-vaccinated populations are low then something else in the vaccines would have to be considered the major causation factor for autism. However, without doing the non-vaccinated population studies there cannot be a conclusive statement either way about either vaccines or thimerosal as being causal for autism. The steadfast refusal of the CDC and others to support such studies being done is part of the reason that many parents, scientists and physicians have severe doubts about the sincerity of their efforts to resolve this issue. This is how I think, when I review a paper submitted for publication I always ask why an obvious experiment wasn't done. The study of non-vaccinated populations is a very obvious experiment that the CDC and its supporters appear to refuse to consider. This makes me suspicious that this knowledge exists and is being suppressed because knowledge of the rate among the non-vaccinated population would answer many questions.
Finally, the Schechter-Grether study may be good news to the vaccine manufacturers and those who recommended and use the mandated vaccine program as it serves as manufactured uncertainty about the thimerosal involvement in autism causation. However, it presents a major concern to the parents and families of infants since it implies that our vaccines, even with most of the free thimerosal removed, may not be safe and that our CDC does not have a clue about what to do make them safe. Common sense would lead most to attack finding the cause of autism instead of trying to prove something besides thimerosal is causal. The major question is “are our vaccines causing autism”---only comparing the non-vaccinated to the vaccinated will answer this question. Common sense would have lead to this comparison being done first and being done 10-15 years ago. In the recent past I have recommended that parents vaccinate their children with thimerosal free vaccines as I considered them safe. If Schechter-Grether are correct, and vaccines, but not thimerosal, correlate with increased autism rates, then I am in error assuming vaccines are now safer with regards to autism risk than they were 2000.
From a listmate
And Lastly!!!
Hi everyone,
Fishing for Tyler was a great success and even more fun. We had a great time and were happy to see friends, co workers, and lots of family there. Thank you to all who were able to come out and support us in so many ways. Fishing for Tyler 2008 is not over! I just wanted to send out two links one is the Extreme Angler website that we are on! The other is The Ontario Fishing Net on line auction. It just started this afternoon.
Here they are:
http://www.extremeanglertv.com/
and
http://www.ofncommunity.com/forums/index.php?showforum=40
Thanks everyone,
Elisa and Terry, Tyler and Tiffany
End of Mailing
February 23rd , 2008-February 28th , 2008
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From Carly Fleischman’s Mother – Tammy Starr
Hello Everyone,
ABC news received an overwhelming response to Carly's story last week as did CTV news in Canada. Both networks want to pursue this story further.
One of my points to make in doing this story about Carly's writing was that I cannot believe she is one in a million. She has had non stop ABA since she was 4 years old and we have been shoving communication aids in her face since she was 2 years old -- you can see I am frustrated by those who think this is glorified FC or that it is a "spontaneous event", although that part has much to do with how the story was told as well.
Anyway, I would really like to hear from parents and/or therapists, etc. who work with other kids like Carly --kids who cannot speak ( she has severe apraxia) but who can communicate by typing on a device. Carly prefers a laptopo but we have had several other kinds of devices before this.
I want ABC and CTV to see that she is not unique. But I will point out to them that we are different from alot of people we have heard from, is that we have been able to provide many years of intensive and expensive therapy to her. Where would she be without that?
This is obviously a very complicated topic and I won't go on further but if you do know someone who can communicate like Carly, please email me at tamstarr@rogers.com
Thanks
From a listmate
Please forward this message and post to all autism lists.
NDP MPP Andrea Horwath has been instrumental in assisting me with approaching the Ombudsman of Ontario http://www.ombudsman.on.ca/ with my request that he investigate the current autism situation in our province. I'm very happy to share with all of you that he has agreed to follow-up and contact me for additional information.
At this time, I ask that families email me with answers to the following three questions below so that I am able to communicate to the Ombudsman the crisis the children are in so that he continues his interest in the investigation.
Taline Sagharian
t.sagharian@sympatico.ca
1) Is your child on the IBI waitlist and if so, how long?
2) Is your child having to receive IBI outside of school?
3) Has your child been discharged from IBI and why?
A really great evening planned for parents, exceptional students, educators and everyone interested in students with special needs "Beating the Odds".
Please share information on this evening session with those who may have an interest. Thank you!
For Immediate Release: 02.19.08
Motivational speaker on Beating the Odds in Sudbury March 4th
A highly-acclaimed motivational speaker will be in Sudbury on Tuesday, March 4th, 2008 to talk about how life for students with disabilities does not have to be a gamble. Lesley Andrew has spoken across North America about Beating the Odds - taking responsibility for personal change and growth, overcoming obstacles, facing fears and attaining goals.
A presentation of Rainbow District School Board in partnership with the Learning Disabilities Association of Sudbury, Lesley Andrew will speak from 7 pm to 8:30 pm at Sudbury Secondary School’s Sheridan Auditorium. In lieu of admission, there will be a collection of non-perishable food items for the Sudbury Food Bank.
Lesley Andrew’s talks offer a mixture of stories, poignant memories, humour, lessons to be learned and inspiration. A well-known Canadian singer and actress, her seminars include a performance of songs.
During her presentation, she will focus on a number of topics - multiple intelligence, gifted learning disabled, handicap of giftedness, the gifts of being learning disabled, finding joy, the importance of art, creative problem solving, critical thinking skills, use of humour, developing organizational skills, time management, and finding and being a hero.
This presentation will appeal to parents/guardians, students with learning disabilities, educators, community agency workers… everyone who cares about students with special needs. Everyone is welcome to attend.
-30-
Media Contact:
Nicole Charette, Senior Advisor,
Corporate Communications and Strategic Planning,
Rainbow District School Board, 705.674.3171, ext. 7217.
charetn@rainbowschools.ca
AUTISM ONE 2008 CONFERENCE
KEYNOTE ADDRESS – JENNY McCARTHY
5 Days That Will Change Your Child's Life
The Sixth Annual Autism One Conference Returns to Chicago
Wednesday, May 21 – Sunday, May 25, Chicago, Illinois
THE REALITY OF RECOVERY Autism is a whole-body condition with many
causes and many roads to recovery. Some children develop autism from
vaccines, other children from exposure to molds, pesticides, and a
host of environmental toxins.
The pioneering efforts of parents and practitioners have brought new
appreciation about the underlying causes that create the conditions
of autism. Understanding the causes has led to safe and effective
treatments that are helping our children get better.
Main Conference: Friday, May 23 – Sunday, May 25
BRILLIANCE IN ACTION Learn at the breakthrough presentations
highlighting over 100 of the most eminent autism experts across five
tracks:
1. Biomedical Treatments
2. Behavior and Education Therapies
3. Complementary and Alternative Medicine
4. Adolescence and Adulthood
5. Government and Legal Issues
MORE REAL ANSWERS From the time you arrive to when you leave you will
be immersed in an environment of help, hope, and answers. Sign up for
a Mentor Mom who will help you 24/7, get detailed answers in the
workshops, sample, and get the recipes of special diets in the hotel
restaurant, take advanced parent training classes, and participate in
the Arts Festival classes.
NEW FOR 2008
- Seminar with Amy Yasko, PhD - Interpreting Lab Tests Seminar
- Thai Cooking as part of Special Diets
- News Desk with In-Depth Analysis
- Defeat Autism Now! Clinician Seminar - Advanced Parent Training
Pre-Conference: Wednesday, May 21 – Thursday, May 22
EMPOWERMENT FROM EDUCATION Some topics require hands-on, day-long
training. The Pre-Conference Days are rich in practical purpose and
presented in a manner to quickly bring you the knowledge to help your
child immediately.
Wednesday, May 21. The Art of Special Diets. Preparing and cooking
special diets was never so easy and delicious. Good food is the first
foundation of recovery.
Thursday, May 22. Defeat Autism Now! Clinician Seminar. Learn the
science and join the movement of practitioners who are effectively
treating autism.
Thursday, May 22. First Responders – Law enforcement officials learn
how to effectively spot and safely deal with situations involving
individuals with autism.
Thursday, May 22. Law Day. Everything IEP. Become your child's most
effective education advocate.
Thursday, May 22. What to do when a child won't eat: Feeding
Disorders and Developmental Delays.
Learn more at http://AutismOne. org or email info@... or call Ed at
714.680.0792.
Autism One is a parent-driven, charity organization helping children
and families with autism.
From a Listmate
Thursday 28th of February 2008
Rabbi Kelman honoured for lifetime of inclusion work
By FRANCES KRAFT, Staff Reporter
Thursday, 28 February 2008
TORONTO — Rabbi Joseph Kelman, right, is being honoured this week by UJA Federation of Greater Toronto for almost five decades of work on behalf of people with special needs. The catalyst for his initial foray into the field, however, was as much happenstance as it was his innate optimism.
“It’s a fantastic story,” he said in a recent interview in his study at Beth Emeth Bais Yehuda Synagogue, where he is rabbi emeritus. Fantastic as in unbelievable, not just the kind of story – instructive, a bit humorous – that the rabbi likes to share.
In 1960, when Beth Emeth was a fledgling congregation, a congregant approached Rabbi Kelman to ask whether his developmentally delayed child – in those days they used the term “mentally retarded” – would be able to have a bar mitzvah.
To this day, Rabbi Kelman finds it hard to fathom how little he knew about the issue, having had no experience with special needs children. “You could say I was naive,” he recalled. I said, ‘What are you worried about? We’ll get a private tutor.’”
The father’s initial silence was his first clue that there was more to the issue. But that child and others went on to celebrate their bar and bat mitzvahs after the rabbi instituted a bar/bat mitzvah program for children with special needs.
When the rabbi learned of another developmentally disabled boy in the neighbourhood, who was attending a non-Jewish camp, he was motivated to start a Jewish program for “retarded” children.
He contacted a downtown school for special needs children to ask for a list of their Jewish students. After being turned down twice, he called a third time to say that he didn’t want to take the school’s students away, but just wanted to start a Sunday school program. “I don’t give up,” he said, his words belying his low-key, affable manner.
“They gave me 20 names. I sent out 20 letters, and 16 came for a meeting.” That was the beginning of Kadimah, a school that provided Judaic and Hebrew education for students with developmental disabilities. “Every Sunday we would sit down and map out a program for the following Sunday,” he recalled of its early days.
A pioneer in the field, Rabbi Kelman developed a conviction early in his career that a person with a handicap is entitled to the same Jewish experience – or a similar one – as anyone else.
He went on to co-found Ezra, a program for students with learning disabilities; the Dr. Abraham Shore She’arim Hebrew Day School, to educate children with learning disabilities; and Reena, an organization that integrates adults with developmental disabilities into the community.
He chaired the North America-wide committee on special education under the auspices of the United Synagogue of Conservative Judaism for more than 30 years, and he was instrumental in having developmentally disabled children accepted into Ramah camps as part of a program now called Tikvah.
At the same time, the father of three (now a grandfather of 10), was also involved in prison and hospital chaplaincy, and was tending to the needs of his congregation as it grew from 100 families to more than 1,500 at the time of his retirement in 1997.
Kelman, who turned 80 last April, said he “sheps nachas” from his involvement with the various schools and organizations, using the Yiddish term to describe the pride and pleasure Jewish parents derive from their offspring.
At the synagogue, he still teaches, officiates at some life-cycle events and conducts High Holy Day services for non-members. He is also working on a book that will be partly autobiographical.
A recipient of numerous honours, he has travelled as far as Johannesburg to serve as a consultant on special needs.
This week’s award ceremony, featuring Ontario Lt.-Gov. David Onley as keynote speaker, was scheduled for Tuesday, Feb. 26, at the Joseph E. and Minnie Wagman Centre. The first-time awards, the Community Inclusion Awards of Excellence, are part of the federation’s broader Community Inclusion Initiative.
Rabbi Kelman’s award is for lifetime achievement. Other recipients are Honey and David Levy for hosting an integrated summer camp program and including people with special needs at their Friday night dinners; Chabad Lubavitch’s Friendship Circle, which matches teenage volunteers with children and teens who have special needs; and Camp George for its commitment to inclusion.
Google alert- a repeat
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20080212/autism_hearing_080212/20080212?hub=Health
Autism suit full of 'holes,' Ontario lawyer argues
The Canadian Press
Updated: Tue. Feb. 12 2008 8:52 AM ET
TORONTO — A $1.25-billion as-yet unapproved class-action lawsuit against seven school boards and the Ontario government over funding for specialized treatment for autistic children looks a lot like "Swiss cheese,'' a lawyer representing the province said Monday.
"It's full of all kinds of holes,'' Robert Charney told a three-judge Ontario Court of Appeal panel during a daylong hearing.
Five families of autistic children are seeking the right to sue for damages should their class-action be certified. Charney argued the claim fails to specify exactly what sort of school-based programs the appellants want, and he suggested the plaintiffs are merely looking for cash to help pay for private school.
But while the judges didn't fully agree with Charney's suggestion the claim wasn't specific enough -- even if they agreed it wasn't always clear -- they wasted no time putting pressure on plaintiff David Baker, who wants the court to approve the potentially landmark lawsuit.
It's not exactly clear why the province should be considered legally responsible for the cost of the expensive, intensive therapy the families want for their children, Justice Paul Rouleau said.
"I understand the overall picture and I understand the difficulties these children are facing, but as a judge I have to bring it back to the legal claim,'' he said.
Baker argued the government has a duty to accommodate disabled students, but discriminates against those with autism, who can't always get both their therapy and education within the public school setting.
He suggested if the therapy can't be provided in regular schools, autistic kids could be accommodated at special schools like those for the blind and deaf.
Instead, he said, many parents have had to not only purchase their own specialized therapy, they've had to send their kids to private school to get it. So far just one family has been able to convince their children's school to allow a privately funded therapist into the classroom.
Anna Martini's sons Joshua, 10, and Noah, 9, were lucky to have a principal who recognized their needs, but it came at a cost.
"I've used up all my savings, used up RRSPs, put a tenant in my basement, borrowed money, remortgaged our house and I've had fundraisers every year,'' Martini said, noting she has fought for funding to help cover the $60,000 yearly cost per child for the specialized therapy her sons need.
"I'll keep doing it if that's what needs to be for their education.''
The families are ultimately suing the province and school boards for negligence and damages for failing to provide and properly fund intensive behavioural intervention and applied behaviour analysis therapy.
Last March, Ontario Superior Court Justice Maurice Cullity sided with the provincial government in striking down several of the key claims, including negligence and damages.
But he let stand the discrimination claim, and in later dismissing the province's demand for $85,000 in legal costs, Cullity recognized the public importance of the issue, giving hope to the families that they might still have a case.
"In discrimination cases there is a provision for an award for damages that does not require proving that the government acted maliciously, and I hope the court will agree with that,'' Baker said outside the courtroom.
"The issue of damages is very important.''
The panel has reserved its decision in the case.
Based on previous court rulings, the government wants the entire case tossed.
Education Minister Kathleen Wynne said last spring the province was working to roll out applied behaviour analysis in schools across Ontario, while intensive behavioural intervention would be used outside schools.
In the fall election campaign, the Liberals pledged $10 million for schools to deliver IBI therapy if re-elected, but the plaintiffs argue the McGuinty government has broken its promise.
An estimated 50,000 children and 150,000 adults in Canada have autism, which has been the subject of several legal battles across the country, most unsuccessful.
From a listmate
Families for Effective Autism Treatments Alberta (FEAT/AB) .
FEAT/AB PRESS CONFERENCE: 11:00am Friday February 29, 2008 (TENTATIVE)
LOCATION: The Pheonix Foundation, 320 28 Street NE, Calgary, Alberta
INVITATION: Families interested in providing support at this conference are asked to contact FEAT AB
CONTACT: feat.ab@shaw.ca (PLEASE CONTACT TO CONFIRM DATE/TIME/LOCATION)
DETAILS (as per the attached document):
INFORMATION / PRESS RELEASE
Families for Effective Autism Treatments of Alberta (FEAT/AB) is a not-for-profit grassroots organization dedicated to supporting families and individuals with Autism Spectrum Disorders throughout the province of Alberta. Issues and concerns brought to the attention of FEAT/AB are common place to areas such as Lethbridge, Fort MacLeod, Banff, Calgary, Red Deer, Edmonton, Peace River, Grande Cache, Fort MacMurray, and others, and are not isolated situations as described by the Alberta Government and reported in the media.
The FSCD Program in the Alberta Service Regions, as mandated by the FSCD Act, Regulations, and Policies, has the purpose of assisting families in meeting the extraordinary expenses involved in helping their disabled children, regardless of diagnosis, move forward and make gains through their childhood years, from birth to age 18, but they are clearly not fully meeting this legislated responsibility. The value of families and disabled children are devalued and undermined through the misuse of the legislation.
In fact, those children with the most severe disabilities, clearly eligible for “Specialized Services for Children with severe disabilities”, are the ones most vulnerable to the arbitrary and discriminatory practice of an ineffective system. This transcends across all disability groups, including Autism Spectrum Disorders.
In these times of unprecedented provincial wealth, successive budgetary surpluses and even recent promises by the government of $120+ billion in spending infusions for essential services, FEAT/AB finds it unfathomable that families are told they will no longer receive the supports entitled by law. This also contravenes the FSCD Act, which clearly identifies the individual needs of child as paramount, not how much that department has allocated in their budget.
FEAT/AB calls on the Alberta government and Alberta Children’s Services to immediately suspend the Multi-Disciplinary Team (MDT) process used by the FSCD Program to often withhold adequate and appropriate funding allocations to families with disabled children, as recommended by registered attending physicians and clinical professionals who work with these children.
FEAT/AB calls on the Alberta government and Alberta Children’s Services and the FSCD Program to ensure adequate / appropriate bridge funding allocations to families with disabled children in the interim, during a full, in depth investigation of current inefficiencies.
FEAT/AB calls on the Alberta government and Alberta Children’s Services and the FSCD Program to investigate the unlawful, arbitrary and discriminatory implementation of the MDT process, which has been used in a manner that is disrespectful and devaluing of families and children with disabilities.
FEAT/AB calls on the Alberta government and Alberta Children’s Services to broaden the scope of the Children’s Advocate to ensure the needs of the disabled child are also being met and enforced.
FEAT/AB calls on the Alberta government and Alberta Children’s Services to involve FEAT/AB and/or Autism Society of Alberta (ASA) appointed representatives, as well as representative form other disability support groups affected by these inequities, to contribute to a meaningful collaboration towards establishing policies, guidelines, and resolutions that benefit disabled children more fully.
Children with Autism Spectrum Disorders and children with other disabling conditions have been shown to benefit from consistent involvement in programming framed in established treatment modalities, which can eventually lead to them becoming contributing adult members of society (tax payers!). Paying now rather then paying later is just sound economics.
Disabled children and their families can only benefit from funding allocations through the FSCD Program for a short time compared to how long they will be adults with disabilities. It is crucial that the flawed MDT process be suspended and thoroughly investigated to determine its legitimacy as described within the FSCD Act, Regulations and Policies.
This deserves to be done while our children are still children and they can still benefit from a unique government program that was initially meant to be so much more and that could still accomplish so much more for disabled Alberta children and their families .
For further details please call FEAT/AB at 403-520-7424.
Thank you,
Guy Emond, President
Families for Effective Autism Treatments of Alberta
AFA Posted Susan Sherring’s Articles in previous messages.
Now she is being honoured. Bravo Susan.
Here is the link to the four part series:
http://ottsun.canoe.ca/News/Features/2007/12/02/4701822-sun.html
From a listmate
Sun columnist honoured
Sun columnist Susan Sherring has won the Joan Gullen Media Award for her four-part series on autism and its impact, both emotional and financial, on families.
Named after Joan Gullen, a distinguished local social worker who has been recognized by the governor general, the award honours excellence in the exploration and reporting of significant social issues affecting the community.
"As a local reporter in Ottawa for many years, I've seen firsthand the kind of good work and dedication of community activist Joan Gullen," said Sherring. "It's really very meaningful for me to receive an award named after a woman like her."
Sherring's interest in autism began years ago when a close friend from high school, Alan Roberts, told her his son had been diagnosed. At the time, she had no idea what that meant.
When she was the Sun's Page Six columnist, Sherring covered many events sponsored by Children At Risk -- a group dedicated to making the lives of children with autism a little bit better -- and learned more about the subject.
Years later, Sherring says there are still many misconceptions about autism.
"I have always wanted the opportunity to explore autism further, and this series gave me that opportunity."
The series was published in December, and explores the complex issue from the family unit to the political realm.
Sherring plans to donate her prize money to Children At Risk.
"We're very proud of Sue," said editor-in-chief Mike Therien. "This is a great example of community and social journalism."
This boy has won a Champion’s for Children Award! He is truly a champion in our community!
Way to go Matteo
Here is his speech. He spoke to the SEAC Committee at the Rainbow District School Board about what it is like to have Autism. My son Morgan, was his inspiration to finally come out and speak, for him and others like himself with no voice. Bravo.
Hi,
My name is Matteo, I am 9years old and I'm autistic which is why I am here today. I like astronomy, reading, math, science and history.
I am fascinated by Albert Einstein, Galileo and Leonardo Da Vinci. When I grow up I want to be a medical scientist and an astronomer. My hero is Albert Einstein. Did you know that he was autistic? He used to always ask questions in school even though it was forbidden. One day his father asked the principal what job would he be good at doing? The principal responded it doesn't matter because he will never be a success at anything. Einstein didn't eat right, he didn't talk until the age of 3 or 4 and his parents did whatever they could to keep him in school.
At times Einstein had bad behavior and he was expelled at school because of his constant questions. I can relate to Einstein because I constantly ask questions, I didn't talk until I was almost 4 years old, sometimes I get frustrated with people that don't answer my constant questions or enjoy listening to me talk about my science stuff. I often get bullied because I seem to be a little different.
But actually I'm not that different from other kids. I go to regular school, I have to do my homework, I take swimming lessons, I like to play with friends and I still have to be nice to my bratty sister. I think people should treat autistic people the same as everyone else because everyone is a little different in their own way.
I still have emotions like everyone else. After all – look at Einstein. Thank goodness his parents helped him the best they could. Look what he has done for the world. Who knows, maybe I can be the next Einstein or one of my autistic friends could be the person that will make an important discovery for the future. I don't want to change being autistic because then I wouldn't be me - so all I'm saying is give autistic kids a chance!
Thanks!
From a listmate
Increasing the chance of success
The media is filled with success stories of children “recovering” from autism. For the parents whose children remain on the spectrum, these stories cause as much hope as they do despair. Parents are often left feeling like they’ve failed their child. Never ending questions and thoughts plague their minds. “Maybe we did too little ABA. Maybe we did too much ABA. We should have … (Read more)
Responsibility Check Lists
Take SIX DOLLARS off the Responsibility Check Lists. Get both sets for just $20. These visual schedules will teach your child independence at home and at school. Use coupon code 8412397 to redeem this offer. The special is valid for the first 300 customers only.
Natural Learning Concepts
http://www.nlconcepts.com
From a listmate and AO
“Proceeding with Compassion While Awaiting the Evidence. Psychopharmacological Approaches to Autism Spectrum Disorder”
With Dr. Bob King
Dr. King will speak about Aspergers and Autism's triad of impairments. He asks the question if ASD is related to psychiatric disorders, anxiety disorders, sleep disorders, developmental disabilities, and behavioral disorders. He will focus on psychiatric disorders and provide information about pharmacological treatments available.
In this presentation, you will learn about:
• Impairments of individuals with ASD
• Possible diagnosis that may co exist
• Pharmacological Treatments
Join Dr. King and Autism Ontario – North Bay and Area Chapter for an informative evening out.
Thursday, March 6th, 6:00 pm
Community Room in the Northgate Square Mall (upstairs from Tim Horton’s)
email: autism.support@cogeco.ca
About the speaker: Dr. Robert (Bob) Joseph King - is a Psychiatrist with the Northeast Mental Health Center. Dr. King founded the Developmental Disabilities Program of the North Bay Psychiatric Hospital in 1993 and is a consulting psychiatrist with Kerry's Place Autism Services. He is an international speaker and has authored and co-authored several works on ASD and mental health.
From a listmate
Autistic kids need more gov't help
The Edmonton Journal
Monday, February 25, 2008
I am a parent with a child with autism. In the past few years, I have seen lots of families have unpleasant experiences with Family Support for Children with Disabilities (FSCD).
Under the FSCD regulations, a child must be severely behind in at least two of five functional areas before he or she qualifies for specialized services. The five areas are behaviour, communication and socialization skills, physical and motor development, cognitive abilities and self-help skills and adaptive functioning.
A multidisciplinary team (MDT) appointed by FSCD will decide if the child's condition is severe enough for services. The MDT consists of three clinical professionals -- a psychologist, speech language pathologist and occupational therapist. Most parents find this process problematic because the MDT, which makes such an important decision for the family, has never met the child.
The MDT's understanding of the child is based on reports submitted by the clinical professionals who work directly with the child. If the MDT decides to deny service, it will say the child cannot achieve any more, although the clinical reports may contradict that.
The parents then face a lengthy and stressful appeal process. FSCD will not reimburse the parents for any costs incurred, even if the parents eventually win the appeal.
Last year, our therapy hours for the whole year were split into two contracts due to an outstanding appeal and resulting discontinuation of services in the middle of the year. We ended up having lots of unused hours in the first 10 months and not enough hours for the last two months. FSCD refused to pay for the excess hours needed in the last two months, although the actual hours used were well below the total hours approved for the whole year. For families who cannot afford to pay for extra hours, the child will not have enough services for part of the year, which may also cause regression.
Eleanor Mui, Edmonton
_______________________________________
Autistic kids not getting help they need
The Edmonton Journal
Tuesday, February 19, 2008
A recent mailout from the PC Party of Alberta states that Premier Ed Stelmach supports the Family Support for Children with autism spectrum disorder.
Unfortunately the Family Support for Children with Disabilities Act leaves many children with autism without the services that they require.
One treatment option is applied behaviour analysis, which is the only treatment available in our area -- Lethbridge. Research suggests that 40 hours of therapy per week will produce best results and that we will not know if fewer than 40 hours of therapy per week will work unless we try it.
Not a single family in the Lethbridge area is receiving 40 hours of therapy for their child with autism. One family receives 35 hours and the rest fewer than 30 hours per week.
Families of children with autism have to fight FSCD to get the therapy their child needs. The appeal process can be costly for families, many of whom have already given up one income to have a parent stay at home with the child.
FSCD is not working for families in this province. Families are not supported in their attempts to raise a child with autism.
Our family has been affected by autism twice.
In September, our four-year-old son's therapy was cut to 13 hours per week and he began regressing.
A certified behavioural psychologist has confirmed the regression and recommended his therapy be increased, but six months later, our child is still regressing while we wait for a response to our appeal, which is not expected until May 19 -- nine months after his therapy was cut.
Our other son, who is three, receives 15 hours of therapy per week. Whatever happened to early intensive intervention?
It seems as if FSCD regards these children as lower-class citizens and doubts what they can do.
By giving my four-year-old only 13 hours per week of therapy, FSCD and their expert multidisciplinary team are saying he cannot achieve more. He has a goal set yearly. By the end of this year, he will know only 47 items; non-autistic children his age typically know 10,000.
Because his hours with his therapist are limited, that is all he is able to learn.
Children with autism spectrum disorder are going to have to live off tax dollars their entire life if the government doesn't invest in appropriate support for them early in life.
Wouldn't you want to give these children the best opportunities, to possibly be active participants in society and become tax payers themselves? Instead we are only giving them good -- not best -- opportunities, and they will be a cost to the taxpayer for many years to come.
Allison Pike,
Lethbridge
From a listmate
The Huffington Post
David Kirby
Government Concedes Vaccine-Autism Case in Federal Court - Now What?
Posted February 25, 2008 | 12:42 PM (EST)
________________________________________
After years of insisting there is no evidence to link vaccines with the onset of autism spectrum disorder (ASD), the US government has quietly conceded a vaccine-autism case in the Court of Federal Claims.
The unprecedented concession was filed on November 9, and sealed to protect the plaintiff's identify. It was obtained through individuals unrelated to the case.
The claim, one of 4,900 autism cases currently pending in Federal "Vaccine Court," was conceded by US Assistant Attorney General Peter Keisler and other Justice Department officials, on behalf of the Department of Health and Human Services, the "defendant" in all Vaccine Court cases.
The child's claim against the government -- that mercury-containing vaccines were the cause of her autism -- was supposed to be one of three "test cases" for the thimerosal-autism theory currently under consideration by a three-member panel of Special Masters, the presiding justices in Federal Claims Court.
Keisler wrote that medical personnel at the HHS Division of Vaccine Injury Compensation (DVIC) had reviewed the case and "concluded that compensation is appropriate."
The doctors conceded that the child was healthy and developing normally until her 18-month well-baby visit, when she received vaccinations against nine different diseases all at once (two contained thimerosal).
Days later, the girl began spiraling downward into a cascade of illnesses and setbacks that, within months, presented as symptoms of autism, including: No response to verbal direction; loss of language skills; no eye contact; loss of "relatedness;" insomnia; incessant screaming; arching; and "watching the florescent lights repeatedly during examination."
Seven months after vaccination, the patient was diagnosed by Dr. Andrew Zimmerman, a leading neurologist at the Kennedy Krieger Children's Hospital Neurology Clinic, with "regressive encephalopathy (brain disease) with features consistent with autistic spectrum disorder, following normal development." The girl also met the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV) official criteria for autism.
In its written concession, the government said the child had a pre-existing mitochondrial disorder that was "aggravated" by her shots, and which ultimately resulted in an ASD diagnosis.
"The vaccinations received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder," the concession says, "which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of ASD."
This statement is good news for the girl and her family, who will now be compensated for the lifetime of care she will require. But its implications for the larger vaccine-autism debate, and for public health policy in general, are not as certain.
In fact, the government's concession seems to raise more questions than it answers.
1) Is there a connection between vaccines, mitochondrial disorders and a diagnosis of autism, at least in some cases?
Mitochondria, you may recall from biology class, are the little powerhouses within cells that convert food into electrical energy, partly through a complex process called "oxidative phosphorylation." If this process is impaired, mitochondrial disorder will ensue.
The child in this case had several markers for Mt disease, which was confirmed by muscle biopsy. Mt disease is often marked by lethargy, poor muscle tone, poor food digestion and bowel problems, something found in many children diagnosed with autism.
But mitochondrial disorders are rare in the general population, affecting some 2-per-10,000 people (or just 0.2%). So with 4,900 cases filed in Vaccine Court, this case should be the one and only, extremely rare instance of Mt disease in all the autism proceedings.
But it is not.
Mitochondrial disorders are now thought to be the most common disease associated with ASD. Some journal articles and other analyses have estimated that 10% to 20% of all autism cases may involve mitochondrial disorders, which would make them one thousand times more common among people with ASD than the general population.
Another article, published in the Journal of Child Neurology and co-authored by Dr. Zimmerman, showed that 38% of Kennedy Krieger Institute autism patients studied had one marker for impaired oxidative phosphorylation, and 47% had a second marker.
The authors -- who reported on a case-study of the same autism claim conceded in Vaccine Court -- noted that "children who have (mitochondrial-related) dysfunctional cellular energy metabolism might be more prone to undergo autistic regression between 18 and 30 months of age if they also have infections or immunizations at the same time."
An interesting aspect of Mt disease in autism is that, with ASD, the mitochondrial disease seems to be milder than in "classic" cases of Mt disorder. In fact, classic Mt disease is almost always inherited, either passed down by the mother through mitochondrial DNA, or by both parents through nuclear DNA.
In autism-related Mt disease, however, the disorder is not typically found in other family members, and instead appears to be largely of the sporadic variety, which may now account for 75% of all mitochondrial disorders.
Meanwhile, an informal survey of seven families of children with cases currently pending in Vaccine Court revealed that all seven showed markers for mitochondrial dysfunction, dating back to their earliest medical tests. The facts in all seven claims mirror the case just conceded by the government: Normal development followed by vaccination, immediate illness, and rapid decline culminating in an autism diagnosis.
2) With 4,900 cases pending, and more coming, will the government concede those with underlying Mt disease -- and if it not, will the Court award compensation?
The Court will soon begin processing the 4900 cases pending before it. What if 10% to 20% of them can demonstrate the same Mt disease and same set of facts as those in the conceded case? Would the government be obliged to concede 500, or even 1,000 cases? What impact would that have on public opinion? And is there enough money currently in the vaccine injury fund to cover so many settlements?
When asked for a comment last week about the court settlement, a spokesman for HHS furnished the following written statement:
"DVIC has reviewed the scientific information concerning the allegation that vaccines cause autism and has found no credible evidence to support the claim. Accordingly, in every case under the Vaccine Act, DVIC has maintained the position that vaccines do not cause autism, and has never concluded in any case that autism was caused by vaccination."
3) If the government is claiming that vaccines did not "cause" autism, but instead aggravated a condition to "manifest" as autism, isn't that a very fine distinction?
For most affected families, such linguistic gymnastics is not so important. And even if a vaccine injury "manifested" as autism in only one case, isn't that still a significant development worthy of informing the public?
On the other hand, perhaps what the government is claiming is that vaccination resulted in the symptoms of autism, but not in an actual, factually correct diagnosis of autism itself.
4) If the government is claiming that this child does NOT have autism, then how many other children might also have something else that merely "mimics" autism?
Is it possible that 10%-20% of the cases that we now label as "autism," are not autism at all, but rather some previously undefined "look-alike" syndrome that merely presents as "features" of autism?
This question gets to the heart of what autism actually is. The disorder is defined solely as a collection of features, nothing more. If you have the features (and the diagnosis), you have the disorder. The underlying biology is the great unknown.
But let's say the government does determine that these kids don't have actual "autism" (something I speculated on HuffPost a year ago). Then shouldn't the Feds go back and test all people with ASD for impaired oxidative phosphorylation, perhaps reclassifying many of them?
If so, will we then see "autism" cases drop by tens, if not hundreds of thousands of people? Will there be a corresponding ascension of a newly described disorder, perhaps something like "Vaccine Aggravated Mitochondrial Disease with Features of ASD?"
And if this child was technically "misdiagnosed" with DSM-IV autism by Dr Zimmerman, how does he feel about HHS doctors issuing a second opinion re-diagnosis of his patient, whom they presumably had neither met nor examined? (Zimmerman declined an interview).
And along those lines, aren't Bush administration officials somewhat wary of making long-distance, retroactive diagnoses from Washington, given that the Terry Schiavo incident has not yet faded from national memory?
5) Was this child's Mt disease caused by a genetic mutation, as the government implies, and wouldn't that have manifested as "ASD features" anyway?
In the concession, the government notes that the patient had a "single nucleotide change" in the mitochondrial DNA gene T2387C, implying that this was the underlying cause of her manifested "features" of autism.
While it's true that some inherited forms of Mt disease can manifest as developmental delays, (and even ASD in the form of Rhett Syndrome) these forms are linked to identified genetic mutations, of which T2387C is not involved. In fact little, if anything, is known about the function of this particular gene.
What's more, there is no evidence that this girl, prior to vaccination, suffered from any kind of "disorder" at all- genetic, mitochondrial or otherwise. Some forms of Mt disease are so mild that the person is unaware of being affected. This perfectly developing girl may have had Mt disorder at the time of vaccination, but nobody detected, or even suspected it.
And, there is no evidence to suggest that this girl would have regressed into symptoms consistent with a DSM-IV autism diagnosis without her vaccinations. If there was such evidence, then why on earth would these extremely well-funded government attorneys compensate this alleged injury in Vaccine Court? Why wouldn't they move to dismiss, or at least fight the case at trial?
6) What are the implications for research?
The concession raises at least two critical research questions: What are the causes of Mt dysfunction; and how could vaccines aggravate that dysfunction to the point of "autistic features?"
While some Mt disorders are clearly inherited, the "sporadic" form is thought to account for 75% of all cases, according to the United Mitochondrial Disease Foundation. So what causes sporadic Mt disease? "Medicines or other toxins," says the Cleveland Clinic, a leading authority on the subject.
Use of the AIDS drug AZT, for example, can cause Mt disorders by deleting large segments of mitochondrial DNA. If that is the case, might other exposures to drugs or toxins (i.e., thimerosal, mercury in fish, air pollution, pesticides, live viruses) also cause sporadic Mt disease in certain subsets of children, through similar genotoxic mechanisms?
Among the prime cellular targets of mercury are mitochondria, and thimerosal-induced cell death has been associated with the depolarization of mitochondrial membrane, according to the International Journal of Molecular Medicine among several others. (Coincidently, the first case of Mt disease was diagnosed in 1959, just 15 years after the first autism case was named, and two decades after thimerosal's introduction as a vaccine preservative.)
Regardless of its cause, shouldn't HHS sponsor research into Mt disease and the biological mechanisms by which vaccines could aggravate the disorder? We still do not know what it was, exactly, about this girl's vaccines that aggravated her condition. Was it the thimerosal? The three live viruses? The two attenuated viruses? Other ingredients like aluminum? A combination of the above?
And of course, if vaccine injuries can aggravate Mt disease to the point of manifesting as autism features, then what other underlying disorders or conditions (genetic, autoimmune, allergic, etc.) might also be aggravated to the same extent?
7) What are the implications for medicine and public health?
Should the government develop and approve new treatments for "aggravated mitochondrial disease with ASD features?" Interestingly, many of the treatments currently deployed in Mt disease (i.e., coenzyme Q10, vitamin B-12, lipoic acid, biotin, dietary changes, etc.) are part of the alternative treatment regimen that many parents use on their children with ASD.
And, if a significant minority of autism cases can be linked to Mt disease and vaccines, shouldn't these products one day carry an FDA Black Box warning label, and shouldn't children with Mt disorders be exempt from mandatory immunization?
8) What are the implications for the vaccine-autism debate?
It's too early to tell. But this concession could conceivably make it more difficult for some officials to continue insisting there is "absolutely no link" between vaccines and autism.
It also puts the Federal Government's Vaccine Court defense strategy somewhat into jeopardy. DOJ lawyers and witnesses have argued that autism is genetic, with no evidence to support an environmental component. And, they insist, it's simply impossible to construct a chain of events linking immunizations to the disorder.
Government officials may need to rethink their legal strategy, as well as their public relations campaigns, given their own slightly contradictory concession in this case.
9) What is the bottom line here?
The public, (including world leaders) will demand to know what is going on inside the US Federal health establishment. Yes, as of now, n=1, a solitary vaccine-autism concession. But what if n=10% or 20%? Who will pay to clean up that mess?
The significance of this concession will unfortunately be fought over in the usual, vitriolic way -- and I fully expect to be slammed for even raising these questions. Despite that, the language of this concession cannot be changed, or swept away.
Its key words are "aggravated" and "manifested." Without the aggravation of the vaccines, it is uncertain that the manifestation would have occurred at all.
When a kid with peanut allergy eats a peanut and dies, we don't say "his underlying metabolic condition was significantly aggravated to the extent of manifesting as an anaphylactic shock with features of death."
No, we say the peanut killed the poor boy. Remove the peanut from the equation, and he would still be with us today.
Many people look forward to hearing more from HHS officials about why they are settling this claim. But whatever their explanation, they cannot change the fundamental facts of this extraordinary case:
The United State government is compensating at least one child for vaccine injuries that resulted in a diagnosis of autism.
And that is big news, no matter how you want to say it.
David Kirby is the author of "Evidence of Harm - Mercury in Vaccines and the Autism Epidemic, A Medical Controversy" (St. Martins Press 2005.)
From a listmate
Deadline fast approaching!
Two Presentations by James Partington, PhD, BCBA
Take advantage of this opportunity to see an internationally renowned behavior analyst in Vancouver.
Earn BCBA and BCABA Continuing Education Credit!
________________________________________
Day One: Understanding and Changing Challenging Behaviors for Young Children with Autism: Practical Advice for Parents and Professionals
This day is designed primarily for parents, instructional assistants, and in-home tutors. The focus is on how to use effective behavioral language teaching techniques to identify the behavioral barriers that prevent your child from engaging in everyday family and school activities (e.g., sitting at the table and eating with others, going to the grocery store without a tantrum, toileting issues, etc.). more Day Two: Designing, Implementing and Troubleshooting Verbal Behavior–ABA Programs
This workshop is designed primarily to provide professionals who are familiar with the ABLLS–R with skills to analyze problems with the development of certain skill areas (e.g. spontaneous use of language and social interaction skills) and to provide them with strategies for addressing those problems. Discussions regarding the analysis of problems in the acquisition of skills, evaluation of educational priorities, and determination of IEP objectives for several students will be conducted. more
________________________________________
Day One: (from left column above) Vancouver – February 29, 2008
Parents frequently have concerns about the behaviors of their child with ASD–behaviors that are complicated by the fact that the child often doesn't understand requests. Another critical factor is that many of these children are not motivated by the types of praise used to teach typically developing children how to behave. This workshop specifically addresses practical issues and will give methods for analyzing problem situations and developing strategies to solve those problems.
Participants will learn how to:
• Identify the basic behavioral principles used to analyze both appropriate and undesired behavior.
• Increase appropriate behavior by developing positive instructional control, and teaching alternative behaviors.
• Observe behavior to determine why a behavior is or is not occurring and its probable function(s).
• Structure situations to encourage desired behavior and avoid unwanted behavior.
• Use simple but effective data collection procedures.
View Registration Form
________________________________________
Day Two: (from right column above) Vancouver – March 1 , 2008
This workshop is designed primarily to provide professionals who are familiar with the ABLLS–R with skills to analyse problems with the development of certain skill areas (e.g. spontaneous use of language and social interaction skills) and to provide them with strategies for addressing those problems. Discussions regarding the analysis of problems in the acquisition of skills, evaluation of educational priorities, and determination of IEP objectives for several students will be conducted.
During the workshop, participants will review data from students' ABLLS, review proposed learning objectives, and observe videotapes of learner skills. The video reviews will include both early phases of assessment and intervention and later phases of treatment interventions. Pre- and post-ABLLS scores of the learners' performance will be reviewed.
Participants will learn how to:
• Identify at least two common problems that are related to the failure of students to make adequate progress in the development of critical learner skills.
• Identify how motivational issues are related to the acquisition of language skills.
• Describe how social reinforcement variables are related to the development of spontaneous verbal behavior.
• Identify how to directly shape critical language and social interaction skills.
View Registration Form
________________________________________
Dr. Partington is the Director of Behavior Analysts, Inc., in Pleasant Hill, California. He is a licensed psychologist and a board certified behavior analyst (BCBA), and has more than 35 years experience in intervention with children who are experiencing language delays as a result of autism-related disorders. Dr. Partington presents internationally on autism-related topics and co-authored with Dr Mark L. Sundberg Teaching Language to Children with Autism or Other Developmental Disabilities. Recently he has published the updated Assessment of Language and Learning Skills Revised (the ABLLS–R).
Important note for BCBAs and BCABAs: These workshops qualify as approved Continuing Education Units (type II CEU, six hours per workshop). In order to receive a continuing education certificate, participants must attend the entire workshop (sign-in and sign-out required) and complete a course evaluation form. Participants who arrive late or leave early will not be eligible for partial CEU credit. Certificates will be provided upon successful completion of the workshop, and the payment of an additional $30 US fee to Behavior Analysts, Inc. for each six hour day. Participants who wish to take advantage of this should bring credit cards for the certification fee. ACT staff will handle paperwork and the sign-in process on behalf of Behavior Analysts, Inc., but are not a party to the transaction.
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Online Registration: Go to www.actcommunity.net and select the "Log In" link at top right of the ACT homepage.
Bursaries: If you are low income and / or traveling to attend a workshop, ACT has some bursary funds available. Please apply for a bursary before registering. See website or contact ACT for more information.
Support & Information: ACT’s team of Information Officers can provide support and information on a wide range of autism-related topics and can advise on whether a workshop is appropriate for your needs. Contact ACT by email at info@actcommunity.net, or by phone at 604-205-5467 or 866-939-5188.
Please do not reply to this email; we cannot receive messages sent to this address.
________________________________________
From a listmate
AWESOME Autism Products!
(This received in late Feb. Maybe they will honour the Feb specials?
Dear Parents:
Let me know if you are interested in any one of these two items.
The weighted blanket is new and better quality than others previously offered.
The Chewy tubes-self explanatory.
To read it in english-click on the top where it says "read in English" in blue. okay?
Thanks
-Tanya: northernautism@personainternet.com
Every child with autism is a shining star. Look until you can see the light within........
Autism* Aspergers Digest
Tanya LV Dixon
Northern Autism Consulting Services
Office: (705) 561-8825
From: karine@fdmt.ca
Lire cette infolettre dans votre fureteur — Read it in English
Un mot de la part de Karine
Super Chew
Fax: (514)935-9768 - thenderson@giantstepsmontreal.com
FDMT Enterprises
2211, de la Metropole
Longueuil, QC J4G 1S5
Canada Tel.: 450-321-5500
Sans frais: 1 (866) 465-0559
Read it your browser — Lire cette infolettre en français
FDMT NEWSLETTER — FEBRUARY 2008
A word from Karine
Dear customer,
Always seeking for new products, I’m proud to present you two new wonderful items, this month.
Our new weighted blanket “Creation Messim”, stuffed with buckwheat hulls is now available.
Weighted blankets are a powerful & effective tool for the sensory challenged. Helps unwind, relax, and calm before sleep as well as during the day. The proprioceptive input and deep pressure provided by the weighted blanket can calm and improve attention & focus, improve body awareness & decrease sensory seeking behaviours.
The New “Super Chew”, from the Chewy Tubes ™ Company are safe and effective tools for practicing biting and chewing skills, feature easy-grasp, closed loop handles, for little hands.
Sincerely,
Karine Gagner dir.
February Specials
Création Messim Weighted Blanket
Blanket filled with buckwheat hulls. Waterproof cover, machine washable. Great for hot dog or sandwich game the client is the topping and the blanket is the bread ! Dimension : 48’’ X 96’’ 36 lb
Regular : $269.95
Special : $219.95
You save 19 %
Until February 29, 2008
only for Internet orders
Limited quantities
Super Chew
Chewy Tubes Super Chew ® are offered to children and adults as a safe and effective tool for practicing biting and chewing skills. They give a tactile and proprioceptive input. Latex and phthalate free.
Feature easy-grasp, closed loop handles, for little hands.
Regular : 5,95 $ Special : 5,00$ You save 19 %
Until February 29, 2008 only for Internet orders Limited quantities
Upcoming Event
Giant Steps Lecture Series 2007-2008
Visual Strategies for Teaching
Students with ASD to Read
Leslie Broun M.Ed. March 18th 2008 9am-4pm
For more information
please call Thomas Henderson (514) 935-1911 x37
fax: (514)935-9768 - thenderson@giantstepsmontreal.com
FDMT Enterprises
2211, de la Metropole
Longueuil, QC J4G 1S5
Canada
Tel.: 450-321-5500
Toll free : 1 (866) 465-0559
From a listmate
In January of 2008, researchers at the California Department of Public Health published a paper in the Archives of General Psychiatry that was widely reported to show that vaccines play no role in autism. Noted researcher Boyd Haley has graciously given ARRI permission to publish his response to this study.
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RESPONSE TO 2008 R. SCHECHTER AND J. GRETHER PUBLCIATION “CONTINUING INCREASES IN AUTISM REPORTED TO CALIFORNIA'S DEVELOPMENTAL SERVICES SYSTEM” WHICH ADDRESSES CALIFORNIA DEPARTMENT OF DEVELOPMENT SERVICES DATA ON EVALUATION OF THE RELATIONSHIP BETWEEN THIMEROSAL AND AUTISM
8 January 2008
by Boyd Haley, Professor of Chemistry, University of Kentucky, Lexington, KY
We should all consider that there are two top priorities in the vaccine/autism issue every American should be concerned with. We need to develop a safe vaccination program, and we need to find the cause of autism and eliminate it if possible. I have been a strong proponent of investigating thimerosal as the casual agent for autism spectrum disorders based on the biological science that shows thimerosal to be incredibly toxic, especially to infants. I know of nothing remotely as toxic as thimerosal that numerous infants would be exposed to before 3 to 4 years of age. Below I present several comments regarding this issue and the 2008 Schechter-Grether study that I think are relevant. Mainly, while the Schechter-Grether study appears to be a well done study it suffers from the fatal flaw of assuming that thimerosal was removed to safe levels in vaccines by 2002. They also cut a fine edge as to time when a significant drop in autism rates would be expected. Further, no study exists that proves our vaccine schedule alone is safe, let alone the current one that still exposes infants to thimerosal, a concern they do not address. The alarming concern is that these authors seem more involved at providing material saying thimerosal is safe than they are concerned with the obvious fact, openly presented in their own data on autism rates, which strongly indicated that increased rates of autism started with the CDC mandated vaccine program. References to support the comments are readily available in many recent publications.
1. Autism was not a known, described illness until about 1941-3, 8 to 10 years after the introduction of thimerosal and similar organic thiol-mercury compounds in biological mixtures used in medicine and other areas. This argues against autism being a genetic illness.
2. In 1977, 10 of 13 infants treated in a single hospital by topical application of thimerosal for umbilical cord infections died of mercury toxicity. This same topical was used on adolescents without obvious ill effects which strongly supports the concept that infants are very susceptible to thimerosal toxicity.
3. The recent increase (starting about 1990) of autism spectrum disorders correlated well with the advent of the CDC mandated vaccine program which increased thimerosal exposures with increased vaccinations. Due to its toxicity, thimerosal would have to be suspect for causing autism.
4. As expected by science, extensive searching for a genetic cause of autism has not turned up a significant find that would explain the recent increased rate in autism. The latest genetic find, at best, might explain 0.5% of autism causation. Most agree that a genetic predisposition is likely (like those that lead to low glutathione levels), but that a toxic exposure is absolutely needed. Consider also, that this increased toxic exposure would have had to occur in all 50 states at about the same time as all states have reported similar increases in autism rates. Only something like the government recommended vaccine program fits this need for a time dependent, uniform exposure of a toxin throughout all the states.
5. In the Schechter-Grether study it is implied or assumed that all thimerosal containing vaccines were gone by the end of 2002 due to their expiration dates. I don't think this is a valid assumption. I have talked to mothers who asked to see the vaccine inserts as late as 2004 and found thimerosal present as a preservative in infant vaccines being used in certain clinics. Also, in 2004 the influenza vaccine was recommended by the CDC for infants 6 months of age and older. It would appear as if a thimerosal free vaccine time-frame would be very hard to identify, if one ever existed. I have read that the average age of autism diagnosis is near 44 months of age. Therefore, while it does seem reasonable to expect a decrease in autism after 4 to 5 years of complete thimerosal removal, assuming a consistent diagnostic protocol was used, it appears this has not been accomplished. This means the Schechter-Grether study is likely somewhat premature in reaching the conclusions reported in that enough time has not passed for the expected decrease to occur and that they were quite optimistic in identifying the dates of thimerosal reduction and underestimate exposures occurring between 2002-4.
6. If, indeed, the complete removal of thimerosal from vaccines was not followed in an appropriate time by a decrease in autism then this would be solid proof that thimerosal was not causal for autism. However, thimerosal has not been completely removed from vaccines and thimerosal used at the original levels in the manufacturing of these vaccines with “trace” amounts left in the vaccines when bottled. I don't know what level “trace” is since it is not a term used in science to describe an actual amount. Some called the 12.5 micrograms mercury in the older vaccines a “trace” amount. Bottom line, the infants are still getting some level of thimerosal, a “trace” amount that is free and an amount of ethylmercury that is bound to the proteins that induce the immune response. If vaccines are causing autism and it appears this is a strong possibility based on the California data and, if removing thimerosal added as a preservative really does not reduce the autism rate then the causation is much more complex.
Consider the possibilities that:
A. Autism may be caused by a thimerosal modified protein that sets off an immune response or causes some other biological reaction that can cascade with injurious effects. Since the vaccines are manufactured with thimerosal present in abundance it is quite likely that any cysteine containing proteins would be modified with ethylmercury. Removal of most of the free thimerosal (or just not adding it) would not decrease the level of any toxic modified protein produced during the vaccines production that might be causal. Removing the thimerosal added as a preservative would not decrease the amount of this ethylmercury modified protein in those vaccines with “trace” thimerosal levels.
B. That autism could be caused in susceptible individuals by very low thimerosal or ethylmercury modified protein exposures due to their genetic susceptibility or other factors (general health, gender). In this scenario the higher thimerosal exposures are not required and the induction of autism is not thimerosal concentration dependent at the old and new thimerosal vaccine levels, but just requires a significant exposure level that is met by the vaccines containing the lower “trace” amounts of thimerosal and past thimerosal levels in vaccine production processes. Bottom line, if genetic susceptibility is involved then causation of autism may not increase linearly with increased thimerosal exposure. Causation may only require low thimerosal exposure or exposure to modified proteins. It is possible that the reduction of thimerosal as in the “trace” was just not enough to produce a safe vaccine.
Not all toxins work like alcohol and the old “dose makes the toxin” is not always correct. As long as they are used, the mere use of “trace” thimerosal in vaccines along with higher levels in the flu vaccine will always prevent a conclusive answer to thimerosal's involvement in autism causation. What should be studied is the “no exposure” versus the “exposed” populations with regard to autism rates.
7. If indeed autism is rare among the non-vaccinated Amish populations, as reported by Dan Olmstead, I find it an amazingly oversight that the CDC and others responsible for infant health do not fund a study in this area. This study could go both ways, if the Amish have autism rates identical with the rest of the population the argument would be over---neither vaccines nor thimerosal would be causal for autism, and I personally would argue in this direction. If, however, the autism rates in the Amish are exceptionally low then vaccines would have to be considered as a prime suspect in causation with the presence of the highly toxic thimerosal the main suspect.
If the results in the 2008 Schechter-Grether study hold up with time, and complete removal of thimerosal does not cause a drop in autism rates and the autism rates in non-vaccinated populations are low then something else in the vaccines would have to be considered the major causation factor for autism. However, without doing the non-vaccinated population studies there cannot be a conclusive statement either way about either vaccines or thimerosal as being causal for autism. The steadfast refusal of the CDC and others to support such studies being done is part of the reason that many parents, scientists and physicians have severe doubts about the sincerity of their efforts to resolve this issue. This is how I think, when I review a paper submitted for publication I always ask why an obvious experiment wasn't done. The study of non-vaccinated populations is a very obvious experiment that the CDC and its supporters appear to refuse to consider. This makes me suspicious that this knowledge exists and is being suppressed because knowledge of the rate among the non-vaccinated population would answer many questions.
Finally, the Schechter-Grether study may be good news to the vaccine manufacturers and those who recommended and use the mandated vaccine program as it serves as manufactured uncertainty about the thimerosal involvement in autism causation. However, it presents a major concern to the parents and families of infants since it implies that our vaccines, even with most of the free thimerosal removed, may not be safe and that our CDC does not have a clue about what to do make them safe. Common sense would lead most to attack finding the cause of autism instead of trying to prove something besides thimerosal is causal. The major question is “are our vaccines causing autism”---only comparing the non-vaccinated to the vaccinated will answer this question. Common sense would have lead to this comparison being done first and being done 10-15 years ago. In the recent past I have recommended that parents vaccinate their children with thimerosal free vaccines as I considered them safe. If Schechter-Grether are correct, and vaccines, but not thimerosal, correlate with increased autism rates, then I am in error assuming vaccines are now safer with regards to autism risk than they were 2000.
From a listmate
And Lastly!!!
Hi everyone,
Fishing for Tyler was a great success and even more fun. We had a great time and were happy to see friends, co workers, and lots of family there. Thank you to all who were able to come out and support us in so many ways. Fishing for Tyler 2008 is not over! I just wanted to send out two links one is the Extreme Angler website that we are on! The other is The Ontario Fishing Net on line auction. It just started this afternoon.
Here they are:
http://www.extremeanglertv.com/
and
http://www.ofncommunity.com/forums/index.php?showforum=40
Thanks everyone,
Elisa and Terry, Tyler and Tiffany
End of Mailing
Friday, February 22, 2008
Autism Articles Feb 19-22nd 2008
Autism News Articles
February 19th, 2008-February 22nd 2008
AFA (The Alliance for Families with Autism) prepares these news articles as a courtesy to your inbox and can be found archived at:
www.autismnewsarticles.blogspot.com
visit often
Send your articles to:
Ktchmeifucan2002@yahoo.ca
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Autism Fundraiser
I am so excited! The fourth annual Fishing for Tyler in Innisfil Beach Park in Alcona this coming Sunday, Feb 24th was mentioned in the TORONTO SUN!!!!!
Check out the attached link to read it.
Elisa
We made it into the Toronto Sun :)
http://www.ofncommunity.com/forums/index.php?showtopic=15976
Another fundraiser, coming VERY soon
Shining Through will host autism fundraiser
MORE STORIES
Richmond Hill
Feb 21, 2008 07:48 AM
It’s all about family at this year’s fundraiser for The Shining Through Centre for Children in Woodbridge.
The centre, which offers an educational program for autistic children, will host its ninth-annual fundraising gala Feb. 29.
The event will take place at Woodbridge’s Paramount Conference and Event Centre and kicks off at 6:30 p.m.
The Shining Through Centre was founded in 2001 to provide an intensive and comprehensive educational program for children with autism. The centre offers therapy called applied behavioral analysis (ABA), one-on-one to autistic children.
The event is already sold out and organizers expect about 1,100 people to attend, Mr. Clement said. But if you want to make a donation to the silent auction, become a sponsor or more information, call 905-851-7955 or e-mail info@shiningthrough.ca
Girl's writings opening new window on autism
Updated Sun. Feb. 17 2008 10:12 PM ET
CTV.ca News Staff
A 13-year-old named Carly is challenging the conventional notions of autism, demonstrating emotional skills that lay hidden for years, until one day, a computer helped her reveal to the world what it's like to have her condition.
From an early age, it was clear Carly had autism. As a young girl, she would often rock back and forth for minutes on end, flail her arms and hit herself repeatedly. Equally troubling, she never gained the ability to speak.
Her father, Arthur Fleishmann, says many people who didn't know her assumed she was intellectually challenged.
"Even professionals labelled her as moderately to severely cognitively impaired. In the old days you would way mentally retarded, which means low IQ and low promise and low potential," he says.
Arthur and Carly's mother Tammy were advised to place her in an institution. Instead, they opted for an intensive therapy called ABA -- Applied Behavioural Analysis, the kind of therapy now recommended for kids with autism but because of the expense and the need for specially trained therapists, isn't available to all children.
While Carly made progress through the therapy, speech continued to elude her.
"We tried hard to get her to talk but it wasn't in the cards for Carly," says her speech pathologist Barbara Nash-Fenton.
Then, two years ago, Carly surprised everyone. Working with a computer equipped with pictures and symbols, she started typing and spelling words. At first it was just words -- help, hurt, head, teeth -- but soon she was assembling sentences.
She typed then as she does now -- slowly using only finger -- and the words she wrote stunned all who knew her.
"All of a sudden these words started to pour out of her," says Nash-Fenton. "And it was an exciting moment because we didn't realize she had all these words."
"It was one of those moments in my career that I'll never forget."
Writing reveals secrets of autism
As Carly learned to write better, she began describing what it was like to have autism and why she does what she does, such as making odd noises and hitting herself.
"It feels like my legs are on fire and a million ants are crawling up my arms," Carly has written about the urge to hit herself.
"I want to be like Taryn," she has written of her twin sister, who does not have autism.
With her single typing finger, Carly has been able to demonstrate her emotional intelligence and witty sense of humour to a family who says they were stunned by what she revealed.
"We realized that inside was an articulate, intelligent, emotive person that we had never met. She was 10 at the time, and we just met her for the first time at 10 or 11 years old," says her father Arthur. "This was unbelievable because it opened up a whole new way of looking at her."
Through her writings, Carly has joked about her "yucky" siblings, shown that she understands their jokes and revealed a curiosity about boys -- even asking when can she go on a date.
"Inside, she is a perfectly normal 13-year-old girl. She has crushes, she likes music, she wants to be treated like every other 13-year-old," says her father.
Carly also has expressed her frustration about her condition and about how the world misunderstands her.
"It is hard to be autistic because no one understands me," she writes. "People look at me and assume I am dumb because I can't talk, or I act differently than them... I think people get scared with things that look or seem different than them. It feels hard. It feels like being in a room with the stereo on full blast."
Autism specialist Dr. Wendy Roberts has read some of Carly's writing and watched her on video. She says Carly is certainly unique in her abilities and provides some fascinating insights into the condition of autism.
"I think the initial reaction is that it is incredibly remarkable," she says. "It is amazing to think that somebody who has not been able to put her thoughts into words now has a mechanism to get some of her ideas across."
Roberts says it's unclear whether Carly's unusual language abilities makes her a rare case or whether her new writing skills are the result of her intensive training.
She says it's rare for someone with autism to have apraxia -- the inability to speak despite an understanding of language -- as well as such an obvious command of written words. Roberts says it may be that Carly possesses unique abilities that make her a rare case, or it may be that her early and intensive training simply drew the skills out.
"What she does is quite uncommon but there hasn't been a really good look at kids with severe apraxia to see what could they be taught with intense teaching," says Roberts. "And that really begs the question of are we giving children enough intensive intervention to see if we are missing a fairly small percentage of kids who have this ability. There may be children being missed because they have not had access to therapy."
"From a broader perspective it puts pressure on us to develop interventions that will allow written language to develop... so that we can develop more effective interventions."
The benefits of ABA therapy
Carly's parents say they are so grateful that their daughter was able to discover this way to communicate because it has made them rethink autism and made them realize that they made the right decision to provide Carly with intensive therapy.
"If we had done what so many people told us to do years ago, we wouldn't have the child we have today. We would have written her off," says her father Arthur. "Then what would she be today?"
"We never would have seen she could write these things. Can you imagine? We would have never have gotten out of her how articulate she is how intelligent she is," he says. "Now, she tells us stories, she teases her brother. She just does it in a different way, she does it with her computer."
Carly's writing has progressed so far in the last two years, she's now starting to write a book. It's a take-off on herself and she's already come up with the title: "Elephant Princess."
Her writing has also helped her therapists help her more effectively.
"We've actually learned a lot about Carly," says her therapist Howard. "Since she has been able to type she has been telling us how it feels to be in her skin -- like ants are crawling up her arm. For us, this is very important. It helps with how we treat Carly, even how doctors treat Carly.
"I think Carly has a lot to teach us."
Carly has said she would like to tell the world about what it's like to have autism, so that others can understand what it's like.
"Autism is hard because you want to act one way but you can't always do that," she has written.
"It's sad that sometimes people don't know that sometimes I can't stop myself and they get mad at me. If I could tell people one thing about autism it would me that I don't want to be this way but I am. So don't be mad. Be understanding."
• Read some of Carly's words.
From a report by CTV medical specialist Avis Favaro and producer Elizabeth St. Philip
Finding her voice
ARTHUR FLEISCHMANN (Globe Feb 19,2008)
Toronto -- As the father of Carly Fleischmann (Finding Her Voice In A Silent World - Globe Life, Feb. 18), I must take issue with Dr. Peter Szatmari's statement that her success "emphasizes the importance of adapting the environment to the child rather than always expecting treatment to improve the child." This makes no sense. If it were not for the Applied Behavioural Analysis treatment that Carly has received since age 4, she would be unable to communicate or perform any of the skills that she can today.
The full text of this article has 131 words.
Special Education
Invitation for Parent Input, Rainbow District School Board
(Sudbury-Manitoulin Catchement)
Contact your board if you do not receive something similar.
See attached pdf file.
No time limit to respond
Autism Poem submitted to Laurentian University Literary Arts for publication contest, a winner
Enjoy
Sometimes, Maybe Never
My Brothers have Autism
Mom Says Liam has autism.
I'm just a kid, I don't really understand.
I think it has something to do with that brain-thingy under his hair.
Whatever it is, sometimes he is just plain weird, and I love him that way. Sometimes.
Sometimes he hits me, bites me or scratches me - it hurts!
Maybe someday he will understand my feelings; maybe never.
Sometimes he smiles and hugs me - we're friends then, and I feel good.
Sometimes when a friend comes over to play the whole house is in an uproar - toys, paper, music-it’s quite chaotic.
He screams then he turns all the lights off!
I hate that!
Maybe someday it will be okay-maybe never.
Last night while he was crying he asked my friend, ‘won't you play with me please?”
She says no. She curls up on her mom’s lap, she is afraid.
Sometimes he plays with us. But mostly he plays alone.
That makes me lonely. Sometimes.
Sometimes when he and we get restless, we start to run about the house.
He likes that. We chase eachother and he laughs with me.
My baby brother is autistic too – he watches us and just squeal with delight when we run.
That makes me happy
AUTISM –A "funny-sort of" Dis - Order
Do people with autism get upset when there is no ORDER?
Sometimes, I wish never.
By Trish Kitching, Sudbury Ontario
Parent to three beautiful autistic children
Autism Breakthrough: Girl's Writings Explain Her Behavior and Feelings
Doctors Amazed by Carly Fleischmann's Ability to Describe the Disorder From the Inside
Carly Fleischman expresses feelings by typing on her laptop computer. (ABC News)
Carly Fleischmann has severe autism and is unable to speak a word. But thanks to years of expensive and intensive therapy, this 13-year-old has made a remarkable breakthrough.
CLICK HERE TO READ CARLY'S ANSWERS TO VIEWERS' QUESTIONS.
Story
You Asked, We Answered: Carly Fleischman, 13, Speaks Out About Autism
Two years ago, working with pictures and symbols on a computer keyboard, she started typing and spelling out words. The computer became her voice.
"All of a sudden these words started to pour out of her, and it was an exciting moment because we didn't realize she had all these words," said speech pathologist Barbara Nash. "It was one of those moments in my career that I'll never forget."
Then Carly began opening up, describing what it was like to have autism and why she makes odd noises or why she hits herself.
"It feels like my legs are on first and a million ants are crawling up my arms," Carly said through the computer.
Carly writes about her frustrations with her siblings, how she understands their jokes and asks when can she go on a date.
"We were stunned," Carly's father Arthur Fleischmann said. "We realized inside was an articulate, intelligent, emotive person that we had never met. This was unbelievable because it opened up a whole new way of looking at her." This is what Carly wants people to know about autism.
Video
Breakthrough: Autistic Teen Finds Voice
"It is hard to be autistic because no one understands me. People look at me and assume I am dumb because I can't talk or I act differently than them. I think people get scared with things that look or seem different than them." "Laypeople would have assumed she was mentally retarded or cognitively impaired. Even professionals labelled her as moderately to severely cognitively impaired. In the old days you would say mentally retarded, which means low IQ and low promise and low potential," Arthur Fleischman said.
Therapists say the key lesson from Carly's story is for families to never give up and to be ever creative in helping children with autism find their voice.
"If we had done what so many people told us to do years ago, we wouldn't have the child we have today. We would have written her off. We would have assumed the worst. We would have never seen how she could write these things —
Autism Breakthrough: Girl's Writings Explain Her Behavior and Feelings
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WHAT OTHERS ARE SAYING
701 Comments
Discuss this topic with the ABC News Community
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Autism and Adults: Finding Independence
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Autism or Something Else?
Autism Advocates Split Over Mysterious Disorder's Cause
CDC Says 300,000 Children Have Autism
From a listmate
Carly's story has now been aired across the USA, here is the link to ABC coverage, there are well over 700 posts on their website in response to the story (and still counting).
http://abcnews.go.com/Health/story?id=4311223&page=1
Also, Ellen DeGeneres had her closing segment about Carly on Tuesday, Feb 19th broadcast, hopefully will find the time tonight to transcribe her commentary to share with the list. Truly inspiring to hear (read) it.
You Asked, She Answered: Carly Fleischmann, 13, Talks to Our Viewers About Autism
How Carly Responded to Your Questions
Carly Fleischman expresses feelings by typing on her laptop computer. (ABC News)
Carly Fleischmann, 13, is autistic, but after years of training, is able to articulate her feelings and thoughts. She provides rare insight into a world few people understand, and she answered some of our viewers' questions below.
Video
Breakthrough: Autistic Teen Finds Voice
CLICK HERE TO READ CARLY'S STORY.
Question: "Millions of people saw your story on ABC News. Thousands have written letters of thanks to you. You are an incredible inspiration to so many families. Everyone is very proud of you. How does this make you feel?"
Carly: "I am so happy. I got a big gift from people around the world. Among so many kids with autism they chose me to be an advocate for autism. Where should I get behind a cause like this? I am so glad that I am able to help people understand autism."
Question: "Hi Carly, after years of not being able to speak, what does it mean to you to be able to tell people what you want to say?"
Greg from Erie, Penn.
Carly: "greg it feels so awesome to ask for things. So how do you speak?"
Question: "Carly, I am so happy you found a way to communicate with those around you! My question is what was it like dealing with autism and coping with the frustrations of not being able to communicate your thoughts, feelings, desires and dislikes to your loved ones?"
Ailyn from Miami, Fl.
Story
Autism Breakthrough: Girl's Writings Explain Her Behavior and Feelings
Carly: "Ailyn it just sucks when I am alone. I feel very sad when mel goas away. I always yell when I feel like people so don't understand why I am sad."
Question: "What can you suggest to me, as a teacher and a parent of young teens with autism to help them?"
Jerry and Marieanne Vincent
Carly: "be patient. Try getting a computer. Give them chips when they type."
Question: "What one thing do you think my autistic child would want me to know about him?"
Carly: "I think he would want you to know that he knows more than you think he does. He is lucky to have nice parents."
You Asked, She Answered: Carly Fleischmann, 13, Talks to Our Viewers About Autism
12Next
http://www.abcnews.go.com/Story?id=4320297&page=2
Good kids’ help brighten lives
Posted By Jennifer Hamilton-McCharles
Posted 21 hours ago
Bryan Bellefeuille and Jessica Rutherford hide from the spotlight, but Thursday they were the centre of attention as nominees for the Ontario Junior Citizen of the Year Awards.
They were recognized for being “good kids” who are making life better for others and doing more than expected of someone their age. Up to 12 winners and one group award will be announced today.
Bellefeuille, a 17-year-old Grade 11 St. Joseph-Scollard Hall student, was nominated by four of his high school teachers.
“I had no idea they would nominate me for something like this,” he said Thursday.
“I really didn’t think I made that big of a difference. They’re only small things, but I do them to try and brighten up people’s days.”
Bellefeuille was recognized for being a good all-around student who assists students in need. He has become the school’s aboriginal ambassador and has worked to enhance the learning experience of his aboriginal friends.
Shirley Grant, Bellefeuille’s high school guidance counsellor, described him as a “good kid who is making life better for others.”
“He goes the extra mile to reach out to his peers and assists them to raise their self esteem. He is a very confident young man with a heart of gold and is an inspiration to all of us here at St. Joseph-Scollard Hall.”
He volunteers at the Cycle for Autism event, helps his dad provide respite care to autistic children, volunteers in the First Nation Labour for Elders program and is raising money to help his high school purchase a guitar for its students.
“I don’t do this for any awards or recognition. I’m doing this because I enjoy it and I want to help out my community,” Bellefeuille said.
While some teens are on the computer or playing sports, Rutherford is helping wherever she can.
The 14-year-old Grade 9 student at West Ferris Secondary School started volunteering at the age of eight. Her resume is several pages long and includes such activities as singing Christmas carols to psychiatric patients in the geriatric ward at the Northeast Mental Health Centre, picking up garbage on area trails, assisting Nipissing Association for Disabled Youth organize their children’s Christmas parties, selling glow sticks and breakfast tickets at the North Bay Relay for Life and assisting Low Income People’s Involvement of Nipissing with its toy drive.
“I’ve never had to force her to do anything,” said Rhonda Rutherford, Jessica’s mother.
“She has the patience of a saint.”
Jessica Rutherford usually works behind the scenes and wasn’t expecting to be recognized for her years of work.
“It’s pretty cool to be nominated for an award like this,” she said.
The Ontario Junior Citizen of the Year started in 1981 as an awards program that recognizes the best in Ontario’s youth. It’s co-ordinated by the Ontario Community Newspapers Association and the Office of the Lieutenant Governor of Ontario.
jhamilton-mccharles@nugget.ca
Autistic kids deserve better treatment
MORE STORIES
• Autistic kids deserve better treatment
Editorials
Feb 21, 2008 07:33 AM
Important decisions must be based on facts. But sometimes governments must also offer hope.
In the case of young people with autism — a life-long neurological condition that causes developmental disability and behaviour problems — hope comes in the form of intensive therapies advocates argue can make a great difference in these children’s lives and greatly improve their prospects for the future.
Unfortunately in Ontario, intensive behavioural intervention and applied behaviour analysis are not offered to school-age children, which places a real burden on families who see this therapy as their only hope. The therapies can cost between $30,000 and $80,000 a year per child. These costs have forced many families to sell their homes, deplete their savings and take on debt.
Four years ago, a group of families, including parents from York Region, filed a $1.25-billion lawsuit arguing their children are being discriminated against. Other children with special needs are receiving therapy and their education within the public school system, while children with autism have been set apart, they argue.
Parts of their claim were struck down last year, with the province demanding the families cover $85,000 in legal costs. But parts of their case are still alive.
In the United States, families can receive treatment for their autistic children to age 21. Alberta and British Columbia also cover the costs. However in Ontario, where we are all paying a special health premium that might lead us to think we would be getting premium health care, the province continues to dig in its heels.
We would not suggest that you, as a taxpayer, should be forced to sign a blank cheque. But more can be done to help these families as evidence continues to show intensive therapies provide a real benefit. We would not hesitate to provide the funding through OHIP for a very expensive but possibly life-saving operation, even if the chances of success were slim. Why would we deny funding for a possibly life changing therapy?
It’s time for Queen’s Park to rethink its position. This is not just an education issue, but a health-care and a social services concern. As it is, many autistic children younger than six, when experts suggest such therapies are most beneficial, are on waiting lists.
Consider the burden autistic children will put on our social service system if we do not give them therapy that may help them live more independently. In simple dollar terms, it can be a matter of paying now or paying later. If paying now can improve people’s live in the process, then that’s what we should do.
Canoe
Editorial
Feb 14, 2008
Province must offer full autism programs
The Ontario government claims it is making great strides to improve education in this province.
The Ministry of Education website boasts smaller class sizes, higher achievement in reading, writing and math, and more students graduating.
What the website does not say is that not all children can benefit from its programs.
Autistic children are being deprived by the province - they are the only disabled group that does not receive both treatment and education on the government's dollar.
It is an obvious case of discrimination - and it is one that a group of parents is fighting with few results.
Five families are trying to sue the Ontario government and seven school boards for negligence and damages, accusing them of failing to provide or properly fund the therapies for autistic children in schools.
Known as intensive behavioural intervention and applied behaviour analysis, the therapies for autism - a life-long neurological condition that causes developmental disability and behaviour problems - can cost from $30,000 to $80,000 a year for each child.
In 2004, the families filed a $1.25-billion lawsuit, which has yet to be certified as a class action, arguing their children were victims of discrimination because other kids with special needs receive both therapy and their education within the publicly funded school system.
Last March, Justice Maurice Cullity sided with the province in striking down several of the key claims, including negligence and damages.
However, he let stand the discrimination claim and in later dismissing the province's demand for $85,000 in legal costs, Cullity acknowledged the significance of the issue, giving hope to the families that they might still have a case.
The group was hoping its lawyer could convince the Ontario Court of Appeal during Monday's one-day hearing they should be allowed to sue for damages if their $1.25-billion class action is certified.
After lawyer David Baker's arguments, Ontario Court of Appeal Justice Paul Rouleau said he's having trouble seeing why the province should be held liable.
The panel has reserved its decision in the case.
Let's hope they listen to experts on the issue - such as the Autism Society of Canada. The society's website says access to individualized education coupled with effective treatment can greatly improve a person's quality of life, including their ability to learn, communicate with others and care for themselves.
Sadly, in order to get such care, some Ontario families have been forced to move to Alberta or B.C. Both provinces fund treatment and education for autistic children. The United States is also an option for such families where autistic children can access the therapies through the education system until the age of 21.
It is reprehensible that Ontario, one of the most prosperous provinces, has shirked its responsibility to provide these children with a chance for a better life.
The Dalton McGuinty government needs to quit treating autistic children like second-class citizens.
Ask Lindsay Moir:
"CanGrands" W5 program
Friday, February 22, 2008
Question & Answer:
Many of you will already know of my interest in "Grandparent Groups" and how they can provide a powerful resource to families of exceptional children. I have attended one such group several times at the Southwest Autism Research and Resource Center in Phoenix Arizona (www.autismcenter.org) and have been impressed how SARRC has found a role for grandparents and utilizes their interest and life experiences to provide the skills to allow them to support their special education grandchild, to be a support to their own children who are stressed trying to cope with parenting an exceptional child, and volunteering in mentoring programs, fundraising and other aspects of SARRC to help autistic children in general.
Inspired by this group, I am working with Autism Ontario's London Chapter to begin such a group here. If we are successful, it could serve as a model to educate and utilize grandparents across the province, for any exceptionality. I will give you time-to-time updates on our progress.
Last summer I was invited to do a workshop at Keswick, Ontario for the CanGrands group. Before, during and after my presentation I had the opportunity to interact with these incredible people. To learn more about CanGrands visit their website (www.cangrands.com).
Did you know that more than 55,000 Ontario children, many with special needs' are being raised by kinship "parents" — usually a grandma living on a pension. Their own children are often unable to care for these young kids due to alcohol, drugs or mental health issues, and the grandparents step in to look after them, with minimal government support.
Last night, the TV program W5 ran an excellent show called "Parents Again" which outlined the plight of these grandparents ... and their joy and committment to their grandchildren. You can see this program in its entireity by clicking on "Parents Again" Part 1 & 2 at www.ctv.ca/W5. The show really captures the angst and stress of raising exceptional children ... with the added twist that the parenting is being done by seniors.
I realy think that this video should be required viewing for all of us involved in the special education field, as well as every Community College student in the Human Services Division... maybe even our MPPs?
On a positive note, the Ontario government has recently changed the laws and grandparents can be eligible for more support, on a more consistent basis. The Minister has now promised that they will not have to relinquish custody of their grandchild in order to became eligible for a funding review — still a few wrinkles to be ironed out? ... but progress none the less!
I have become increasingly aware of how many grandparents attend my workshops across the province, either to support the Mom or Dad by attending with them, or because they are actively involved in the raising of an exceptional grandchild. I sense they are seeking a role, and have the time, life experience and distance from the day-to-day challenges of raising a special needs child, to become a key piece of the puzzle.
Attention educators, community professionals, legislators — THE GRANDPARENTS ARE COMING!! THE GRANDPARENTS ARE COMING!! — and they are a force to be reckoned with!
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at ask.questions@yahoo.ca He will answer as many questions as possible.
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Beverly McIntosh is raising her two grandchildren, six-year-old Austin and nine-year-old Rosina, two children both damaged by Fetal Alcohol Syndrome.
Beverly McIntosh, a 60-year-old retirement from Hamilton, Ont., says she doesn't even know where her son, the children's father, is.
David Taylor is challenging governments to step up do more for grandparents who are raising their grandchildren.
W-FIVE
Updated: Sat. Feb. 16 2008 7:30 PM ET
More and more grandparents in Canada find themselves raising children for a second time, but this time around, they are raising their grandchildren. At least 65,000 children live with their grandparents in Canada. And most of those grandparents are raising the children on a small pension, living below the poverty line.
In Hamilton, Ontario, 60-year-old Beverly McIntosh's retirement is a lot different from what she imagined. That's because Beverly is raising her two grandchildren, six-year-old Austin and nine-year-old Rosina, two children both damaged by fetal alcohol syndrome. They are also two children left behind by their parents.
Beverly says she doesn't even know where her son, the children's father, is. "He was in Hamilton. I haven't seen him for three years. The mother, I haven't seen for two years. The mother has major, major issues with alcohol, drugs."
The story is not unusual, as most of those children being raised by grandparents are suffering from problems. It could be attention deficit disorder or fetal alcohol syndrome or learning disabilities.
And the grandparents are doing this tough job on a tight budget. Before her grandchildren came to live with her, Beverly's house was paid off and she was living a comfortable, if modest, existence. Now, she's had to take out a line of credit to pay her monthly bills. Her line of credit is almost exhausted. Beverly wonders what the future will bring then. Will she have to sell her house, will the government be there to give her a place to live?
Saving grandchildren is Betty Cornelius's life work. It began with her granddaughter, Ashley. Aware of her own isolation, she decided to do something about it and organized a network with a special purpose. They call themselves Cangrands.
According to Betty, the purpose is to "give support, education and empowerment to grandparents that are raising grandchildren that are raising grandchildren to kinship families... And really what it is, is a lot of hand holding a lot of listening... it's a hard job, it's a club nobody wanted to join."
But they do join. There are now almost 600 members with chapters across Canada. They are bound together by the tragic tales of grandchildren they have managed to save. But it hasn't been easy.
The average grandparent raising grandchildren in Canada is living on less than $15,000 a year.
As W-FIVE found out, these grandparents, who fight to keep their grandchildren out of the foster care system, are saving taxpayers hundreds of millions of dollars but they are receiving little or no government assistance.
They'd get more help if they were taking care of a complete stranger -- foster children -- but take care of your own grandchild, and they call it welfare.
"I'm a registered foster family. It's $1,700 a month, on average, for my foster baby but I get $226 for my grandchild. Same government but different department. And so I call that discrimination. And it feels like punishment for our kinship families," explains Betty.
Now, the Ontario government says it's got a solution -- a proposed new law called Bill 210 promising to pay these grandparents $900 a month.
But, in Toronto, critic Lynn Cunningham says there's a catch: "Anybody who already has custody of their child isn't eligible. The child involved has to be in care."
Ontario's welfare minister, Madeleine Meilleur, says it won't work like that. Grandparents already doing the job can apply: "If the courts decide that the grandparents are the best person to look after their children then they will receive this additional amount."
Money isn't the only solution and Canadians aren't the only ones struggling with the problems of raising grandchildren. In the rough neighbourhood of the Bronx, New York, there's an oasis called Grandparents Family Apartment. It's a place of refuge... a place where grandparents and grandchildren can build a new life.
The complex is one of a kind, and it's working. David Taylor is the man who came up with the idea, and built it with mostly donated money from the organization he runs called Presbyterian Senior Services.
"The 50 families came who came to this building in June of 2005 ... most of them were living in horrific conditions. Some of them were rat infested, gangs and drug infested building," says David
"The purpose of this house is to provide affordable, safe housing for grandparents raising grandchildren and also to provide an environment that children, the grandchildren can grow from and mature and become educated and be able to sort of go into the world and do their thing successfully."
Now, David Taylor is challenging governments to step up and build more. He wonders why Canadian governments couldn't do the same.
Beverly McIntosh just hopes that help comes in time. "We are in desperate need of funds to raise our grandchildren. We are saving them millions of dollars. They can give us a little bit to help."
From a listmate
Ellen DeGeneres spoke of Carly Fleishmann and her amazing communication skills she has developed on her show this past Tuesday, Feb. 19th, 2008. She closed the show with the following monologue:
So, I’m asked to do things from time to time for people. And I can do only do so much, I try to do what I can. But I was given a request, there is a little girl in Toronto , her name is Carly. She’s 13 years old and she’s autistic. And she asked me to speak for her for her Bat Mitzvah because she doesn’t speak. And she wrote something for me to speak for her, which was the most beautiful thing. And I could hardly keep it together when I was reading it. And she has been writing me thank you notes ever since. And she wrote me another one recently.
And it says, “They say that one of the greatest gifts in the world is someone’s voice, and I can’t believe it, but you lent me yours.”
She goes on to say a lot of things, “I wish I could twirl my magic dream wand and give all the people without a place to live a home. Or I wish I lived closer and they could stay at my house. They could sleep in my parents bed and my dad would read them stories. They might like that, his stories always cheer me up.”
She is truly amazing. I mean, you look as someone and you see what is an autistic person and you think they don’t think the same way or they don’t have the intelligence. And this girl is special.
And she says, “I am sending you $550.50 since you turned 50 years old. I know it’s not enough to build a house, but it’s a start. I hope you had a great birthday and with portia and hope I help make your dreams come true. Keep dreaming. Love Carly.”
And she sent me this cheque for Make it Right.
Amazing Carly, Thank You.
From a listmate
Sent: Tuesday, February 19, 2008 3:30 PM
Subject: Big Brother show..calling people with autism " retards" ( please take action)
If you haven't done so already please click through and take action. This is regarding the
idiot on Big Brother who claims to be working for an Autism Org. and referred to people with
autism as "retards". A-Champ is demanding an apology, a firing and the show pulled just as
they did to IMUS. I think turn about is fair play.
Forward this to as many people as you can to flood the email boxes at CBS.
Click on this URL to take action now
http://capwiz. com/a-champ/ utr/2/?a= 11010616& i=70700466& c=
If your email program does not recognize the URL as a link,
copy the entire URL and paste it into your Web browser.
End of mailing
February 19th, 2008-February 22nd 2008
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Autism Fundraiser
I am so excited! The fourth annual Fishing for Tyler in Innisfil Beach Park in Alcona this coming Sunday, Feb 24th was mentioned in the TORONTO SUN!!!!!
Check out the attached link to read it.
Elisa
We made it into the Toronto Sun :)
http://www.ofncommunity.com/forums/index.php?showtopic=15976
Another fundraiser, coming VERY soon
Shining Through will host autism fundraiser
MORE STORIES
Richmond Hill
Feb 21, 2008 07:48 AM
It’s all about family at this year’s fundraiser for The Shining Through Centre for Children in Woodbridge.
The centre, which offers an educational program for autistic children, will host its ninth-annual fundraising gala Feb. 29.
The event will take place at Woodbridge’s Paramount Conference and Event Centre and kicks off at 6:30 p.m.
The Shining Through Centre was founded in 2001 to provide an intensive and comprehensive educational program for children with autism. The centre offers therapy called applied behavioral analysis (ABA), one-on-one to autistic children.
The event is already sold out and organizers expect about 1,100 people to attend, Mr. Clement said. But if you want to make a donation to the silent auction, become a sponsor or more information, call 905-851-7955 or e-mail info@shiningthrough.ca
Girl's writings opening new window on autism
Updated Sun. Feb. 17 2008 10:12 PM ET
CTV.ca News Staff
A 13-year-old named Carly is challenging the conventional notions of autism, demonstrating emotional skills that lay hidden for years, until one day, a computer helped her reveal to the world what it's like to have her condition.
From an early age, it was clear Carly had autism. As a young girl, she would often rock back and forth for minutes on end, flail her arms and hit herself repeatedly. Equally troubling, she never gained the ability to speak.
Her father, Arthur Fleishmann, says many people who didn't know her assumed she was intellectually challenged.
"Even professionals labelled her as moderately to severely cognitively impaired. In the old days you would way mentally retarded, which means low IQ and low promise and low potential," he says.
Arthur and Carly's mother Tammy were advised to place her in an institution. Instead, they opted for an intensive therapy called ABA -- Applied Behavioural Analysis, the kind of therapy now recommended for kids with autism but because of the expense and the need for specially trained therapists, isn't available to all children.
While Carly made progress through the therapy, speech continued to elude her.
"We tried hard to get her to talk but it wasn't in the cards for Carly," says her speech pathologist Barbara Nash-Fenton.
Then, two years ago, Carly surprised everyone. Working with a computer equipped with pictures and symbols, she started typing and spelling words. At first it was just words -- help, hurt, head, teeth -- but soon she was assembling sentences.
She typed then as she does now -- slowly using only finger -- and the words she wrote stunned all who knew her.
"All of a sudden these words started to pour out of her," says Nash-Fenton. "And it was an exciting moment because we didn't realize she had all these words."
"It was one of those moments in my career that I'll never forget."
Writing reveals secrets of autism
As Carly learned to write better, she began describing what it was like to have autism and why she does what she does, such as making odd noises and hitting herself.
"It feels like my legs are on fire and a million ants are crawling up my arms," Carly has written about the urge to hit herself.
"I want to be like Taryn," she has written of her twin sister, who does not have autism.
With her single typing finger, Carly has been able to demonstrate her emotional intelligence and witty sense of humour to a family who says they were stunned by what she revealed.
"We realized that inside was an articulate, intelligent, emotive person that we had never met. She was 10 at the time, and we just met her for the first time at 10 or 11 years old," says her father Arthur. "This was unbelievable because it opened up a whole new way of looking at her."
Through her writings, Carly has joked about her "yucky" siblings, shown that she understands their jokes and revealed a curiosity about boys -- even asking when can she go on a date.
"Inside, she is a perfectly normal 13-year-old girl. She has crushes, she likes music, she wants to be treated like every other 13-year-old," says her father.
Carly also has expressed her frustration about her condition and about how the world misunderstands her.
"It is hard to be autistic because no one understands me," she writes. "People look at me and assume I am dumb because I can't talk, or I act differently than them... I think people get scared with things that look or seem different than them. It feels hard. It feels like being in a room with the stereo on full blast."
Autism specialist Dr. Wendy Roberts has read some of Carly's writing and watched her on video. She says Carly is certainly unique in her abilities and provides some fascinating insights into the condition of autism.
"I think the initial reaction is that it is incredibly remarkable," she says. "It is amazing to think that somebody who has not been able to put her thoughts into words now has a mechanism to get some of her ideas across."
Roberts says it's unclear whether Carly's unusual language abilities makes her a rare case or whether her new writing skills are the result of her intensive training.
She says it's rare for someone with autism to have apraxia -- the inability to speak despite an understanding of language -- as well as such an obvious command of written words. Roberts says it may be that Carly possesses unique abilities that make her a rare case, or it may be that her early and intensive training simply drew the skills out.
"What she does is quite uncommon but there hasn't been a really good look at kids with severe apraxia to see what could they be taught with intense teaching," says Roberts. "And that really begs the question of are we giving children enough intensive intervention to see if we are missing a fairly small percentage of kids who have this ability. There may be children being missed because they have not had access to therapy."
"From a broader perspective it puts pressure on us to develop interventions that will allow written language to develop... so that we can develop more effective interventions."
The benefits of ABA therapy
Carly's parents say they are so grateful that their daughter was able to discover this way to communicate because it has made them rethink autism and made them realize that they made the right decision to provide Carly with intensive therapy.
"If we had done what so many people told us to do years ago, we wouldn't have the child we have today. We would have written her off," says her father Arthur. "Then what would she be today?"
"We never would have seen she could write these things. Can you imagine? We would have never have gotten out of her how articulate she is how intelligent she is," he says. "Now, she tells us stories, she teases her brother. She just does it in a different way, she does it with her computer."
Carly's writing has progressed so far in the last two years, she's now starting to write a book. It's a take-off on herself and she's already come up with the title: "Elephant Princess."
Her writing has also helped her therapists help her more effectively.
"We've actually learned a lot about Carly," says her therapist Howard. "Since she has been able to type she has been telling us how it feels to be in her skin -- like ants are crawling up her arm. For us, this is very important. It helps with how we treat Carly, even how doctors treat Carly.
"I think Carly has a lot to teach us."
Carly has said she would like to tell the world about what it's like to have autism, so that others can understand what it's like.
"Autism is hard because you want to act one way but you can't always do that," she has written.
"It's sad that sometimes people don't know that sometimes I can't stop myself and they get mad at me. If I could tell people one thing about autism it would me that I don't want to be this way but I am. So don't be mad. Be understanding."
• Read some of Carly's words.
From a report by CTV medical specialist Avis Favaro and producer Elizabeth St. Philip
Finding her voice
ARTHUR FLEISCHMANN (Globe Feb 19,2008)
Toronto -- As the father of Carly Fleischmann (Finding Her Voice In A Silent World - Globe Life, Feb. 18), I must take issue with Dr. Peter Szatmari's statement that her success "emphasizes the importance of adapting the environment to the child rather than always expecting treatment to improve the child." This makes no sense. If it were not for the Applied Behavioural Analysis treatment that Carly has received since age 4, she would be unable to communicate or perform any of the skills that she can today.
The full text of this article has 131 words.
Special Education
Invitation for Parent Input, Rainbow District School Board
(Sudbury-Manitoulin Catchement)
Contact your board if you do not receive something similar.
See attached pdf file.
No time limit to respond
Autism Poem submitted to Laurentian University Literary Arts for publication contest, a winner
Enjoy
Sometimes, Maybe Never
My Brothers have Autism
Mom Says Liam has autism.
I'm just a kid, I don't really understand.
I think it has something to do with that brain-thingy under his hair.
Whatever it is, sometimes he is just plain weird, and I love him that way. Sometimes.
Sometimes he hits me, bites me or scratches me - it hurts!
Maybe someday he will understand my feelings; maybe never.
Sometimes he smiles and hugs me - we're friends then, and I feel good.
Sometimes when a friend comes over to play the whole house is in an uproar - toys, paper, music-it’s quite chaotic.
He screams then he turns all the lights off!
I hate that!
Maybe someday it will be okay-maybe never.
Last night while he was crying he asked my friend, ‘won't you play with me please?”
She says no. She curls up on her mom’s lap, she is afraid.
Sometimes he plays with us. But mostly he plays alone.
That makes me lonely. Sometimes.
Sometimes when he and we get restless, we start to run about the house.
He likes that. We chase eachother and he laughs with me.
My baby brother is autistic too – he watches us and just squeal with delight when we run.
That makes me happy
AUTISM –A "funny-sort of" Dis - Order
Do people with autism get upset when there is no ORDER?
Sometimes, I wish never.
By Trish Kitching, Sudbury Ontario
Parent to three beautiful autistic children
Autism Breakthrough: Girl's Writings Explain Her Behavior and Feelings
Doctors Amazed by Carly Fleischmann's Ability to Describe the Disorder From the Inside
Carly Fleischman expresses feelings by typing on her laptop computer. (ABC News)
Carly Fleischmann has severe autism and is unable to speak a word. But thanks to years of expensive and intensive therapy, this 13-year-old has made a remarkable breakthrough.
CLICK HERE TO READ CARLY'S ANSWERS TO VIEWERS' QUESTIONS.
Story
You Asked, We Answered: Carly Fleischman, 13, Speaks Out About Autism
Two years ago, working with pictures and symbols on a computer keyboard, she started typing and spelling out words. The computer became her voice.
"All of a sudden these words started to pour out of her, and it was an exciting moment because we didn't realize she had all these words," said speech pathologist Barbara Nash. "It was one of those moments in my career that I'll never forget."
Then Carly began opening up, describing what it was like to have autism and why she makes odd noises or why she hits herself.
"It feels like my legs are on first and a million ants are crawling up my arms," Carly said through the computer.
Carly writes about her frustrations with her siblings, how she understands their jokes and asks when can she go on a date.
"We were stunned," Carly's father Arthur Fleischmann said. "We realized inside was an articulate, intelligent, emotive person that we had never met. This was unbelievable because it opened up a whole new way of looking at her." This is what Carly wants people to know about autism.
Video
Breakthrough: Autistic Teen Finds Voice
"It is hard to be autistic because no one understands me. People look at me and assume I am dumb because I can't talk or I act differently than them. I think people get scared with things that look or seem different than them." "Laypeople would have assumed she was mentally retarded or cognitively impaired. Even professionals labelled her as moderately to severely cognitively impaired. In the old days you would say mentally retarded, which means low IQ and low promise and low potential," Arthur Fleischman said.
Therapists say the key lesson from Carly's story is for families to never give up and to be ever creative in helping children with autism find their voice.
"If we had done what so many people told us to do years ago, we wouldn't have the child we have today. We would have written her off. We would have assumed the worst. We would have never seen how she could write these things —
Autism Breakthrough: Girl's Writings Explain Her Behavior and Feelings
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WHAT OTHERS ARE SAYING
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Autism Advocates Split Over Mysterious Disorder's Cause
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From a listmate
Carly's story has now been aired across the USA, here is the link to ABC coverage, there are well over 700 posts on their website in response to the story (and still counting).
http://abcnews.go.com/Health/story?id=4311223&page=1
Also, Ellen DeGeneres had her closing segment about Carly on Tuesday, Feb 19th broadcast, hopefully will find the time tonight to transcribe her commentary to share with the list. Truly inspiring to hear (read) it.
You Asked, She Answered: Carly Fleischmann, 13, Talks to Our Viewers About Autism
How Carly Responded to Your Questions
Carly Fleischman expresses feelings by typing on her laptop computer. (ABC News)
Carly Fleischmann, 13, is autistic, but after years of training, is able to articulate her feelings and thoughts. She provides rare insight into a world few people understand, and she answered some of our viewers' questions below.
Video
Breakthrough: Autistic Teen Finds Voice
CLICK HERE TO READ CARLY'S STORY.
Question: "Millions of people saw your story on ABC News. Thousands have written letters of thanks to you. You are an incredible inspiration to so many families. Everyone is very proud of you. How does this make you feel?"
Carly: "I am so happy. I got a big gift from people around the world. Among so many kids with autism they chose me to be an advocate for autism. Where should I get behind a cause like this? I am so glad that I am able to help people understand autism."
Question: "Hi Carly, after years of not being able to speak, what does it mean to you to be able to tell people what you want to say?"
Greg from Erie, Penn.
Carly: "greg it feels so awesome to ask for things. So how do you speak?"
Question: "Carly, I am so happy you found a way to communicate with those around you! My question is what was it like dealing with autism and coping with the frustrations of not being able to communicate your thoughts, feelings, desires and dislikes to your loved ones?"
Ailyn from Miami, Fl.
Story
Autism Breakthrough: Girl's Writings Explain Her Behavior and Feelings
Carly: "Ailyn it just sucks when I am alone. I feel very sad when mel goas away. I always yell when I feel like people so don't understand why I am sad."
Question: "What can you suggest to me, as a teacher and a parent of young teens with autism to help them?"
Jerry and Marieanne Vincent
Carly: "be patient. Try getting a computer. Give them chips when they type."
Question: "What one thing do you think my autistic child would want me to know about him?"
Carly: "I think he would want you to know that he knows more than you think he does. He is lucky to have nice parents."
You Asked, She Answered: Carly Fleischmann, 13, Talks to Our Viewers About Autism
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http://www.abcnews.go.com/Story?id=4320297&page=2
Good kids’ help brighten lives
Posted By Jennifer Hamilton-McCharles
Posted 21 hours ago
Bryan Bellefeuille and Jessica Rutherford hide from the spotlight, but Thursday they were the centre of attention as nominees for the Ontario Junior Citizen of the Year Awards.
They were recognized for being “good kids” who are making life better for others and doing more than expected of someone their age. Up to 12 winners and one group award will be announced today.
Bellefeuille, a 17-year-old Grade 11 St. Joseph-Scollard Hall student, was nominated by four of his high school teachers.
“I had no idea they would nominate me for something like this,” he said Thursday.
“I really didn’t think I made that big of a difference. They’re only small things, but I do them to try and brighten up people’s days.”
Bellefeuille was recognized for being a good all-around student who assists students in need. He has become the school’s aboriginal ambassador and has worked to enhance the learning experience of his aboriginal friends.
Shirley Grant, Bellefeuille’s high school guidance counsellor, described him as a “good kid who is making life better for others.”
“He goes the extra mile to reach out to his peers and assists them to raise their self esteem. He is a very confident young man with a heart of gold and is an inspiration to all of us here at St. Joseph-Scollard Hall.”
He volunteers at the Cycle for Autism event, helps his dad provide respite care to autistic children, volunteers in the First Nation Labour for Elders program and is raising money to help his high school purchase a guitar for its students.
“I don’t do this for any awards or recognition. I’m doing this because I enjoy it and I want to help out my community,” Bellefeuille said.
While some teens are on the computer or playing sports, Rutherford is helping wherever she can.
The 14-year-old Grade 9 student at West Ferris Secondary School started volunteering at the age of eight. Her resume is several pages long and includes such activities as singing Christmas carols to psychiatric patients in the geriatric ward at the Northeast Mental Health Centre, picking up garbage on area trails, assisting Nipissing Association for Disabled Youth organize their children’s Christmas parties, selling glow sticks and breakfast tickets at the North Bay Relay for Life and assisting Low Income People’s Involvement of Nipissing with its toy drive.
“I’ve never had to force her to do anything,” said Rhonda Rutherford, Jessica’s mother.
“She has the patience of a saint.”
Jessica Rutherford usually works behind the scenes and wasn’t expecting to be recognized for her years of work.
“It’s pretty cool to be nominated for an award like this,” she said.
The Ontario Junior Citizen of the Year started in 1981 as an awards program that recognizes the best in Ontario’s youth. It’s co-ordinated by the Ontario Community Newspapers Association and the Office of the Lieutenant Governor of Ontario.
jhamilton-mccharles@nugget.ca
Autistic kids deserve better treatment
MORE STORIES
• Autistic kids deserve better treatment
Editorials
Feb 21, 2008 07:33 AM
Important decisions must be based on facts. But sometimes governments must also offer hope.
In the case of young people with autism — a life-long neurological condition that causes developmental disability and behaviour problems — hope comes in the form of intensive therapies advocates argue can make a great difference in these children’s lives and greatly improve their prospects for the future.
Unfortunately in Ontario, intensive behavioural intervention and applied behaviour analysis are not offered to school-age children, which places a real burden on families who see this therapy as their only hope. The therapies can cost between $30,000 and $80,000 a year per child. These costs have forced many families to sell their homes, deplete their savings and take on debt.
Four years ago, a group of families, including parents from York Region, filed a $1.25-billion lawsuit arguing their children are being discriminated against. Other children with special needs are receiving therapy and their education within the public school system, while children with autism have been set apart, they argue.
Parts of their claim were struck down last year, with the province demanding the families cover $85,000 in legal costs. But parts of their case are still alive.
In the United States, families can receive treatment for their autistic children to age 21. Alberta and British Columbia also cover the costs. However in Ontario, where we are all paying a special health premium that might lead us to think we would be getting premium health care, the province continues to dig in its heels.
We would not suggest that you, as a taxpayer, should be forced to sign a blank cheque. But more can be done to help these families as evidence continues to show intensive therapies provide a real benefit. We would not hesitate to provide the funding through OHIP for a very expensive but possibly life-saving operation, even if the chances of success were slim. Why would we deny funding for a possibly life changing therapy?
It’s time for Queen’s Park to rethink its position. This is not just an education issue, but a health-care and a social services concern. As it is, many autistic children younger than six, when experts suggest such therapies are most beneficial, are on waiting lists.
Consider the burden autistic children will put on our social service system if we do not give them therapy that may help them live more independently. In simple dollar terms, it can be a matter of paying now or paying later. If paying now can improve people’s live in the process, then that’s what we should do.
Canoe
Editorial
Feb 14, 2008
Province must offer full autism programs
The Ontario government claims it is making great strides to improve education in this province.
The Ministry of Education website boasts smaller class sizes, higher achievement in reading, writing and math, and more students graduating.
What the website does not say is that not all children can benefit from its programs.
Autistic children are being deprived by the province - they are the only disabled group that does not receive both treatment and education on the government's dollar.
It is an obvious case of discrimination - and it is one that a group of parents is fighting with few results.
Five families are trying to sue the Ontario government and seven school boards for negligence and damages, accusing them of failing to provide or properly fund the therapies for autistic children in schools.
Known as intensive behavioural intervention and applied behaviour analysis, the therapies for autism - a life-long neurological condition that causes developmental disability and behaviour problems - can cost from $30,000 to $80,000 a year for each child.
In 2004, the families filed a $1.25-billion lawsuit, which has yet to be certified as a class action, arguing their children were victims of discrimination because other kids with special needs receive both therapy and their education within the publicly funded school system.
Last March, Justice Maurice Cullity sided with the province in striking down several of the key claims, including negligence and damages.
However, he let stand the discrimination claim and in later dismissing the province's demand for $85,000 in legal costs, Cullity acknowledged the significance of the issue, giving hope to the families that they might still have a case.
The group was hoping its lawyer could convince the Ontario Court of Appeal during Monday's one-day hearing they should be allowed to sue for damages if their $1.25-billion class action is certified.
After lawyer David Baker's arguments, Ontario Court of Appeal Justice Paul Rouleau said he's having trouble seeing why the province should be held liable.
The panel has reserved its decision in the case.
Let's hope they listen to experts on the issue - such as the Autism Society of Canada. The society's website says access to individualized education coupled with effective treatment can greatly improve a person's quality of life, including their ability to learn, communicate with others and care for themselves.
Sadly, in order to get such care, some Ontario families have been forced to move to Alberta or B.C. Both provinces fund treatment and education for autistic children. The United States is also an option for such families where autistic children can access the therapies through the education system until the age of 21.
It is reprehensible that Ontario, one of the most prosperous provinces, has shirked its responsibility to provide these children with a chance for a better life.
The Dalton McGuinty government needs to quit treating autistic children like second-class citizens.
Ask Lindsay Moir:
"CanGrands" W5 program
Friday, February 22, 2008
Question & Answer:
Many of you will already know of my interest in "Grandparent Groups" and how they can provide a powerful resource to families of exceptional children. I have attended one such group several times at the Southwest Autism Research and Resource Center in Phoenix Arizona (www.autismcenter.org) and have been impressed how SARRC has found a role for grandparents and utilizes their interest and life experiences to provide the skills to allow them to support their special education grandchild, to be a support to their own children who are stressed trying to cope with parenting an exceptional child, and volunteering in mentoring programs, fundraising and other aspects of SARRC to help autistic children in general.
Inspired by this group, I am working with Autism Ontario's London Chapter to begin such a group here. If we are successful, it could serve as a model to educate and utilize grandparents across the province, for any exceptionality. I will give you time-to-time updates on our progress.
Last summer I was invited to do a workshop at Keswick, Ontario for the CanGrands group. Before, during and after my presentation I had the opportunity to interact with these incredible people. To learn more about CanGrands visit their website (www.cangrands.com).
Did you know that more than 55,000 Ontario children, many with special needs' are being raised by kinship "parents" — usually a grandma living on a pension. Their own children are often unable to care for these young kids due to alcohol, drugs or mental health issues, and the grandparents step in to look after them, with minimal government support.
Last night, the TV program W5 ran an excellent show called "Parents Again" which outlined the plight of these grandparents ... and their joy and committment to their grandchildren. You can see this program in its entireity by clicking on "Parents Again" Part 1 & 2 at www.ctv.ca/W5. The show really captures the angst and stress of raising exceptional children ... with the added twist that the parenting is being done by seniors.
I realy think that this video should be required viewing for all of us involved in the special education field, as well as every Community College student in the Human Services Division... maybe even our MPPs?
On a positive note, the Ontario government has recently changed the laws and grandparents can be eligible for more support, on a more consistent basis. The Minister has now promised that they will not have to relinquish custody of their grandchild in order to became eligible for a funding review — still a few wrinkles to be ironed out? ... but progress none the less!
I have become increasingly aware of how many grandparents attend my workshops across the province, either to support the Mom or Dad by attending with them, or because they are actively involved in the raising of an exceptional grandchild. I sense they are seeking a role, and have the time, life experience and distance from the day-to-day challenges of raising a special needs child, to become a key piece of the puzzle.
Attention educators, community professionals, legislators — THE GRANDPARENTS ARE COMING!! THE GRANDPARENTS ARE COMING!! — and they are a force to be reckoned with!
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at ask.questions@yahoo.ca He will answer as many questions as possible.
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Beverly McIntosh is raising her two grandchildren, six-year-old Austin and nine-year-old Rosina, two children both damaged by Fetal Alcohol Syndrome.
Beverly McIntosh, a 60-year-old retirement from Hamilton, Ont., says she doesn't even know where her son, the children's father, is.
David Taylor is challenging governments to step up do more for grandparents who are raising their grandchildren.
W-FIVE
Updated: Sat. Feb. 16 2008 7:30 PM ET
More and more grandparents in Canada find themselves raising children for a second time, but this time around, they are raising their grandchildren. At least 65,000 children live with their grandparents in Canada. And most of those grandparents are raising the children on a small pension, living below the poverty line.
In Hamilton, Ontario, 60-year-old Beverly McIntosh's retirement is a lot different from what she imagined. That's because Beverly is raising her two grandchildren, six-year-old Austin and nine-year-old Rosina, two children both damaged by fetal alcohol syndrome. They are also two children left behind by their parents.
Beverly says she doesn't even know where her son, the children's father, is. "He was in Hamilton. I haven't seen him for three years. The mother, I haven't seen for two years. The mother has major, major issues with alcohol, drugs."
The story is not unusual, as most of those children being raised by grandparents are suffering from problems. It could be attention deficit disorder or fetal alcohol syndrome or learning disabilities.
And the grandparents are doing this tough job on a tight budget. Before her grandchildren came to live with her, Beverly's house was paid off and she was living a comfortable, if modest, existence. Now, she's had to take out a line of credit to pay her monthly bills. Her line of credit is almost exhausted. Beverly wonders what the future will bring then. Will she have to sell her house, will the government be there to give her a place to live?
Saving grandchildren is Betty Cornelius's life work. It began with her granddaughter, Ashley. Aware of her own isolation, she decided to do something about it and organized a network with a special purpose. They call themselves Cangrands.
According to Betty, the purpose is to "give support, education and empowerment to grandparents that are raising grandchildren that are raising grandchildren to kinship families... And really what it is, is a lot of hand holding a lot of listening... it's a hard job, it's a club nobody wanted to join."
But they do join. There are now almost 600 members with chapters across Canada. They are bound together by the tragic tales of grandchildren they have managed to save. But it hasn't been easy.
The average grandparent raising grandchildren in Canada is living on less than $15,000 a year.
As W-FIVE found out, these grandparents, who fight to keep their grandchildren out of the foster care system, are saving taxpayers hundreds of millions of dollars but they are receiving little or no government assistance.
They'd get more help if they were taking care of a complete stranger -- foster children -- but take care of your own grandchild, and they call it welfare.
"I'm a registered foster family. It's $1,700 a month, on average, for my foster baby but I get $226 for my grandchild. Same government but different department. And so I call that discrimination. And it feels like punishment for our kinship families," explains Betty.
Now, the Ontario government says it's got a solution -- a proposed new law called Bill 210 promising to pay these grandparents $900 a month.
But, in Toronto, critic Lynn Cunningham says there's a catch: "Anybody who already has custody of their child isn't eligible. The child involved has to be in care."
Ontario's welfare minister, Madeleine Meilleur, says it won't work like that. Grandparents already doing the job can apply: "If the courts decide that the grandparents are the best person to look after their children then they will receive this additional amount."
Money isn't the only solution and Canadians aren't the only ones struggling with the problems of raising grandchildren. In the rough neighbourhood of the Bronx, New York, there's an oasis called Grandparents Family Apartment. It's a place of refuge... a place where grandparents and grandchildren can build a new life.
The complex is one of a kind, and it's working. David Taylor is the man who came up with the idea, and built it with mostly donated money from the organization he runs called Presbyterian Senior Services.
"The 50 families came who came to this building in June of 2005 ... most of them were living in horrific conditions. Some of them were rat infested, gangs and drug infested building," says David
"The purpose of this house is to provide affordable, safe housing for grandparents raising grandchildren and also to provide an environment that children, the grandchildren can grow from and mature and become educated and be able to sort of go into the world and do their thing successfully."
Now, David Taylor is challenging governments to step up and build more. He wonders why Canadian governments couldn't do the same.
Beverly McIntosh just hopes that help comes in time. "We are in desperate need of funds to raise our grandchildren. We are saving them millions of dollars. They can give us a little bit to help."
From a listmate
Ellen DeGeneres spoke of Carly Fleishmann and her amazing communication skills she has developed on her show this past Tuesday, Feb. 19th, 2008. She closed the show with the following monologue:
So, I’m asked to do things from time to time for people. And I can do only do so much, I try to do what I can. But I was given a request, there is a little girl in Toronto , her name is Carly. She’s 13 years old and she’s autistic. And she asked me to speak for her for her Bat Mitzvah because she doesn’t speak. And she wrote something for me to speak for her, which was the most beautiful thing. And I could hardly keep it together when I was reading it. And she has been writing me thank you notes ever since. And she wrote me another one recently.
And it says, “They say that one of the greatest gifts in the world is someone’s voice, and I can’t believe it, but you lent me yours.”
She goes on to say a lot of things, “I wish I could twirl my magic dream wand and give all the people without a place to live a home. Or I wish I lived closer and they could stay at my house. They could sleep in my parents bed and my dad would read them stories. They might like that, his stories always cheer me up.”
She is truly amazing. I mean, you look as someone and you see what is an autistic person and you think they don’t think the same way or they don’t have the intelligence. And this girl is special.
And she says, “I am sending you $550.50 since you turned 50 years old. I know it’s not enough to build a house, but it’s a start. I hope you had a great birthday and with portia and hope I help make your dreams come true. Keep dreaming. Love Carly.”
And she sent me this cheque for Make it Right.
Amazing Carly, Thank You.
From a listmate
Sent: Tuesday, February 19, 2008 3:30 PM
Subject: Big Brother show..calling people with autism " retards" ( please take action)
If you haven't done so already please click through and take action. This is regarding the
idiot on Big Brother who claims to be working for an Autism Org. and referred to people with
autism as "retards". A-Champ is demanding an apology, a firing and the show pulled just as
they did to IMUS. I think turn about is fair play.
Forward this to as many people as you can to flood the email boxes at CBS.
Click on this URL to take action now
http://capwiz. com/a-champ/ utr/2/?a= 11010616& i=70700466& c=
If your email program does not recognize the URL as a link,
copy the entire URL and paste it into your Web browser.
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