Autism News Articles
April 14th 2008- April 20th 2008
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From the Welland Tribune
Raising awareness of autism
Posted 2 days ago
For families who learn their child has autism Mike Gowan wants them to know there is help. There is information and support which families with autistic children can access in Niagara.
That support is important, Gowan says.
The Pelham man is president of the Niagara chapter of Autism Ontario, and knows firsthand how challenging it can be to raise an autistic child.
When his son Spencer was diagnosed, the incidence rate was one in 10,000. Now it is one in about 165. Gowan is sure part of the explanation lies in the fact that many who had autism spectrum disorders in the past went undiagnosed. But he has little doubt the incidence of autism is on the rise.
Autism is the term used to describe a large number of developmental disorders. The disorders are characterized by difficulties in social interaction and communication as well as repetitive and compulsive behaviours.
With that level of need in the community there has to be services available to help. Gowan says it is important to be able to offer services and support close to home because traveling far afield can be frustrating for families.
The Niagara chapter office, which is at 60 James St. in St. Catharines, offers services such as one-on-one counselling, summer camp opportunities and a lending library with books and videos. Gowan stresses the agency does not advocate any theories on autism or treatments. It just puts as much information out there as it can for its members.
To fund all those activities, the Niagara chapter is holding a fundraising blues concert at the CAW Hall 199 on Bunting Road in St. Catharines tonight. Bluesaganza tickets are $15 at the door.
Its fifth annual go-kart race is on May 4 and the association’s annual golf tournament is being held June 13 at Rolling Meadows.
The Niagara chapter also holds its Cycle for Autism event June 7 on Merritt Island. That event isn’t limited to cyclists – roller bladers, runners and walkers joined cyclists in raising $23,000 last year.
The fundraisers are important because they help fund opportunities for children with autism to become more comfortable in social situations. It is important in a child’s development to get out into the public. It’s the only way they can learn how to act in social settings, he said.
“We don’t want to keep them hidden away. They learn through interacting with other children,” Gowan says.
Not all the events the association puts on are for the general public. It holds a number of what it calls social learning opportunities. Those are gatherings at movie theatres or bowling alleys where families with autistic children can be together for a night out.
The movie and the bowling nights allow the children to learn to be more comfortable in public and gives their families a chance to take children out in a fun and non-judgemental atmosphere.
Gowan and his family have become accustomed to the disapproving stares and snide comments of strangers when Spencer screams or acts out in public.
But it can be difficult for families whose child has been newly diagnosed, and the social learning opportunities are as much an opportunity for the families to learn as it is for their children, he said.
For more information check out www.autismontario.com/niagara or call 905-682-2776.
Copyright © 2008 Welland Tribune
From a listmate
TRAINING FUNDED BY THE MINISTRY OF CHILDREN AND YOUTH SERVICES
Instructor Therapists hired by families receiving funding through the Direct Funding Option (DFO) in the Autism Intervention Program are eligible to receive tranining at no cost to the family or the Instructor Therapist.
This training is designed to enable Instructor Therapists to enhance their skills in delivering Intensive Behavioural Intervention services (IBI) in order to enchance the service they provide to the child.
Intensive Behavioural Intervention
To register and for more information on participating colleges, please go to
Contact Mary Smirle (416) 351-0330 ext #233 OR
Margaret Moran (416) 351-0330 ext #226
Colleges of Ontario Network for Education and Training (CONNECT)
This training initiative is supported by the Government of Ontario, coordinated by CONNECT Strategic Alliances and delivered by participating Colleges.
From a listmate
Dear ASD-CARC Resarch Participant,
We have been working with the Public Health Agency of Canada on a project that we hope will lead to a means of tracking ASDs in Canada. This is the first phase of this project - finding out what the ASD Community feels is important to track.
Please see the message below, which is an invidation to participate in this important and vital first step.
Please also share this email with your friends and colleagues and others you know are interested in ASD issues.
Jeanette J.A. Holden, PhD,FCCMG, Professor, Autism Research Program, Depts. Psychiatry and Physiology, Queen's University
Melissa Hudson, BSc, ASD-CARC Research Assistant, Queen's University
Good afternoon/Bonjour, (français ci-bas)
What do governments need to track to better understand Autism Spectrum Disorders (ASDs), and improve policy, programs and services for individuals and their families? Tell us now at www.asdsurveillance.ca. Tracking autism – We want to hear from you!
In November 2006, the Government of Canada committed to consulting with stakeholders about the feasibility of developing surveillance on ASDs in Canada. The Public Health Agency of Canada is now in the process of considering what information would be important to track about ASDs and how this information could be collected.
Over the past few months, the Public Health Agency of Canada has been working with Autism Society Canada, the Autism Spectrum Disorders-Canadian American Research Consortium (ASD-CARC) and the Canadian Autism Intervention Research Network (CAIRN) to consult with individuals, families, doctors and ASD researchers to see what can be done to track ASDs in Canada. Now we need your help.
Tell us what you think we should be tracking. Together we have developed an on-line survey to gather input on what information about ASDs is important to track among the group of Canadians with ASDs.
We want to hear from all members of the ASD community (including Autism, Asperger’s Syndrome and Pervasive Developmental Disorders Not Otherwise Specified), – individuals with ASDs, family members and other caregivers, doctors and service providers who diagnose and treat those with ASDs, school teachers and early childhood educators, adult service providers, those involved in policy and program development, and researchers studying these conditions.
The survey should take no more than 10 minutes to complete, and all responses will be kept strictly confidential. The survey will be posted until May 20h at www.asdsurveillance.ca. But why wait? Go to
the web site now. Tell us what information you think is important to track about ASDs. Help us plan a better future for all Canadians.
Qu’est-ce que les gouvernements doivent surveiller pour mieux comprendre les troubles du spectre autistique (TSA), améliorer les politiques, les programmes, et les services aux personnes atteintes et de leurs familles? Dites-le-nous dès maintenant au www.surveillancedesTSA.ca. Sur la piste de l’autisme – nous avons besoin de vos indices!
En novembre 2006, le gouvernement fédéral s’est engagé à étudier la faisabilité d’un système de surveillance des TSA au Canada en consultant les parties intéressées. L’Agence de la santé publique du Canada examine maintenant quelles données il est important de suivre et comment recueillir l’information.
Au cours des derniers mois, l’Agence de la santé publique du Canada, de concert avec la Société canadienne de l’autisme, l’ASD-CARC (Autism Spectrum Disorders-Canadian American Research Consortium) et le CAIRN (Canadian Autism Intervention Research Network) a consulté les individus, les familles, les médecins et les chercheurs dans le but de mettre en œuvre un mécanisme de surveillance des TSA. Maintenant, nous avons besoin de votre aide.
Dites-nous ce que nous devrions surveiller. Ensemble, nous avons préparé un sondage en ligne pour savoir quels sont les renseignements à surveiller concernant les personnes aux prises avec un TSA.
Nous voulons recueillir les commentaires de tous les interlocuteurs dans le dossier des TSA – personnes touchées, membres de la famille et autres aidants, médecins et professionnels qui diagnostiquent et
traitent les personnes aux prises avec un TSA, enseignants et éducateurs de la petite enfance, fournisseurs de services aux adultes, responsables de l’élaboration de politiques et de programmes et chercheurs. Le questionnaire ne devrait pas prendre plus de dix minutes à remplir, et toutes les réponses demeureront strictement confidentielles. Le sondage sera affiché sur le site www.surveillancedesTSA.ca jusqu’au 20 mai, mais pourquoi attendre?
Allez sur le site aujourd’hui même. Dites-nous quelle information au sujet des TSA devrait faire l’objet d’une surveillance. Aidez-nous à planifier un avenir meilleur pour toutes les personnes vivant au Canada.
From Dr. Nancy Freeman
April 14, 2008
Dear Parents and Stakeholders:
I’m writing to provide a second update on the status of the Benchmark Development Expert Panel. I’ve also appended my March 6, 2008 letter to the end of this one, for those of you who may not have seen it. I’d like to thank you for your continued interest in the panel’s work. The messages received have been reviewed and are being taken into consideration by the panel members.
I’m pleased to say that the panel is progressing well in its work. The literature review has been conducted and is in the writing stage. As part of our research, we have sent out an email survey regarding current practice to over 80 providers and researchers in Ontario, across Canada, in the United States, and in the UK and Europe, and are collating the results from that survey. We have also conducted telephone interviews with a number of private providers and researchers to gather more in-depth information. We have reviewed the professional codes of ethics from the Canadian Psychological Association, the American Psychological Association, and the Behavior Analyst Certification Board, and have consulted with a professional ethicist, to verify that we are engaging in an ethical clinical process. A broader stakeholder meeting is in the planning stages.
The panel remains committed to deliver a thorough report on benchmarks which could be used to support the implementation of the Clinical Practice Guidelines developed by the independent Expert Clinical Panel for the Autism Intervention Program. The benchmarks being developed are intended to be used consistently across the province to monitor each child’s progress during Intensive Behavioural Intervention (IBI) and to facilitate transparent clinical decision-making processes regarding the continuation of IBI or the transition of the child to school and/or other appropriate services in the community. We understand that the Ministry is waiting for the development of these benchmarks before working with autism service providers regarding implementation of the Clinical Practice Guidelines. It is of the utmost importance to the panel that we complete the benchmarks in a timely fashion, while ensuring the integrity of the process.
Dr. Nancy Freeman, C. Psych.
Chair, Benchmark Development Expert Panel
March 6, 2008
Dear Parents and Stakeholders:
I am writing to you as the Chair of the Benchmark Development Expert Panel to provide you with an update on our work.
First, I want to thank you for the interest you have expressed in the Benchmark Development Expert Panel, and to let you know that the important issues raised by parents and stakeholders will be shared with the panel and taken into consideration.
As you may know, in October 2006, the Ministry of Children and Youth Services established an Expert Clinical Panel (ECP) for the Autism Intervention Program. It was an independent, arms-length panel asked to develop a set of clinical practice guidelines that would enable consistent clinical decision making in the delivery of Intensive Behavioural Intervention (IBI) services. The ECP, which was chaired by Dr. Peter Szatmari, completed its report entitled: “The Development of Clinical Practice Guidelines for the Delivery of Intensive Behavioural Intervention for Children with Autism Spectrum Disorders in Ontario” in January 2008. The ECP sought advice from parents and other ASD experts regarding the development of the Clinical Practice Guidelines. I was a member of that panel which also included a parent representative, autism researchers, a direct funding provider, and a clinical director.
That Expert Clinical Panel for the Autism Intervention Program recommended that, in order to implement the clinical practice guidelines, benchmarks needed to be developed to measure change, to be used in conjunction with the Clinical Practice Guidelines. Benchmarks are a common tool used with clinical practice guidelines in other areas like health services.
In response to the Clinical Practice Guidelines, a new independent and arms-length expert panel, the Benchmark Development Expert Panel, was established to develop benchmarks that could be used to support the implementation of the Clinical Practice Guidelines. These benchmarks are intended to be used to monitor progress and facilitate decision-making regarding continuation of children in IBI.
The Ministry has indicated that the Clinical Practice Guidelines will not be implemented until the Benchmark Panel has completed its work. At that time, the ministry will work with autism service providers and others regarding implementation.
I am pleased to be chairing this panel which includes in its membership: two parent representatives, a direct funding provider, representatives from the Expert Clinical Panel and additional clinical experts and researchers (updated membership list attached). Dr. Peter Szatmari is an ex-officio member of the panel.
The Benchmark Development Expert Panel’s work plan includes:
• a review of the related literature;
• development of benchmarks;
• development of an evaluation process for the benchmarks;
• consultation with Dr. Szatmari and the other members of the Expert Clinical Panel as the benchmarks are developed to help the Benchmark Panel ensure that the benchmarks are consistent with the Clinical Practice Guidelines; and
• an engagement plan to consult with a range of stakeholders including parents of children in the IBI program (DSO and DFO), other parents of children with ASD, autism service providers and experts in the field of ASD
The Benchmark Development Expert Panel has had two meetings so far, and is working on a very tight timeline to complete its work on the final benchmarks for the CPGs.
The panel values your input and interest as we tackle this challenging task, and appreciates your understanding as we work to establish a consistent and transparent process. We fully appreciate that the panel’s work is of paramount importance to parents and professionals.
Dr. Nancy Freeman, C. Psych.
Chair, Benchmark Development Expert Panel
Benchmark Development Expert Panel
Dr. Nancy Freeman (chair)
Toronto Partnership for Autism Services
Surrey Place Centre
Toronto, Ontario Mr. Robert Brown
Parent of past IBI client
Senior Radiation Therapist
Ottawa Cancer Clinic
Vice President of Autism Ontario
Dr. Jennifer Dunn Geier
Autism Intervention Program, Eastern Region
Children’s Hospital of Eastern Ontario
Mr. Terry Whitehead
Parent of past IBI client
Hamilton City Councillor
Ms. Tracie Lindblad
Child Development Centre of Oakville
Dr. Adrienne Perry
Associate Professor & Clinical-Developmental Psychologist
Dr. Jo-Ann Reitzel
Hamilton-Niagara Regional Autism Intervention Program
McMaster Children’s Hospital
Dr. Tristram Smith
Research Director, Multi-site Young Autism Project
Associate Director for Research
Strong Center for Developmental Disabilities University of Rochester Medical Center
Rochester, New York
Dr. Peter Szatmari (ex-officio member)
Department of Psychiatry and Behavioural Neurosciences
McMaster University, Chedoke Site
From the Whig Standard
Updated 5 days ago
Plenty of Kingstonians were out in shorts and T-shirts during yesterday’s mild temperatures, but Jay Serdula went one better. Serdula, an employee at Royal Military College, who is planning to do a charity swim from Fort Henry to RMC on Friday,was doing some short conditioning swims yesterday in the still-frigid waters of the lake off the PUC filtration plant dock. Serdula, who suffers from
Asperger’s syndrome, is also planning a marathon swim across Lake Ontario this summer to raise money for the study of the neurobiological disorder.
Adaptive Rowing around the world
Raising autism awareness
Posted By Craig Sebert
Posted 4 days ago
April is Autism month, and Our Lady of Mercy Catholic Elementary School is spreading the word.
From April 14 to 18, the school ran the sixth annual Together For Autism campaign a project designed to raise awareness about autism, and to raise money for research at the Autism Ontario.
“A lot of people are unaware of what autism really is and what it means for people suffering from autism,” said Lois Lalonde, educational assistant for the school. “Autism is not an easy thing for people to spot.”
It is a brain development disorder that impairs social interaction and communication by causing restricted and repetitive behavior. It always starts before a child is three years old. Autism covers a wide spectrum, ranging from individuals with severe impairments, who may be silent, mentally disabled, displaying repetitive behaviour and locked into hand flapping and rocking, up to less impaired individuals who may have active but distinctly odd social characteristics, narrowly focused interests and impaired communication skills.
“Sometimes people with autism are all the way up to levels of genius in particular areas like math for instance,” said psychologist Alan McAllister.
“In my experience, I have met some of the most delightful people who had autism.”
In preparation of the campaign, Lalonde says she sent the entire student body home with information about autism, to try and shed some light on the issue.
When the campaign began, students were allowed to wear their hats the entire day if they paid $2 each morning. For another $2, they could participate in the candy guess game.
“Every year I put a whole bunch of candies in a jar, and the student who guesses the number, or closest to the number gets to keep the jar (and its contents).”
Last year, community members pitched in, helping the school raise over $1,000.
Lydia Mulvihill, a local mother of two autistic children went into the community to sell raffle tickets and a number of birdhouses she made. Her family also pitched in hand-crafted wooden bowls, pictures of outer space and a crocheted doily for inclusion in the raffle.
“With their help again this year, we hope to exceed our last year’s amount.”
Although the campaign is almost over, people who still wish to donate can do so by bringing donations to the school.
The cause of autism remains unclear. What is known for sure is that it is highly inheritable, but the genetics of autism are so complex, no one knows for sure which genes are to blame.
The number of people known to have autism has increased dramatically since the 1980s for reasons still unknown. Males lead females in developing autiam by a ratio of 4:1.
Since autism is a neurological condition, testing can only be done when the child reaches about the age of two.
“There isn’t a medical test doctors can give like a blood test, but it is something parents and caregivers should be on the lookout for.”
Autistic infants show less attention to social stimuli like smiles and laughter, and respond less to their own name. Autistic toddlers have more striking social deviance, like having less eye contact and are more likely to communicate by manipulating another person’s hand. Autistic children over the age of three are less likely to exhibit social understanding, approach others spontaneously, imitate and respond to emotions and communicate non-verbally.
While there is no cure that can eliminate autism, there is a method of treatment available that can help manage the symptoms called the Intensive Behavioural Intervention program.
“There is intense programming which can result in significant development in children with autism.”
While the treatment can work with almost any autistic child, regardless of the severity of their condition, a positive outcome is more likely if the autism is discovered early.
McAllister says the Ontario Government pays for part of the program, until the child reaches six years-of-age.
Mulvihill says raising her two children can be a challenge, but is all part of being a parent.
“For the most part they are well behaved. We have daily routine in place, and that is good for everyone.”
Mulvihill says her daughter has autism, while her son has a less severe case, commonly known as Aspergers Syndrome.
“It took a long time to figure out he had Aspergers since he was quite verbal. But I knew there was something different about him at two since he would constantly fixate on things.”
After taking him to a behavioural specialist at the age of eight, she was given the news.
“It breaks your heart when the doctor looks at you and tells you what the diagnosis is.”
With her daughter, there was no doubt she had autism.
“We knew almost immediately something was wrong. She stopped talking when she was about two.”
Both of her children are energetic, and perform pretty well in school. Mulvihill says her son joined Scouts last year and has good computer skills.
“He says he either wants to be a chef or a graphic artist. He loves art.”
As for her daughter, Mulvihill says she lives in her own little happy world most of the time, enjoys making bubbles and wants to be a diamond fairy when she grows up.
“We still don’t know what that is exactly, reality doesn’t really live in her world. I sometimes wish I could be in her mind for one day.”
Nevertheless, she is also good at computers, and has a talent for French.
“They do circles around me when it comes to computers and French.”
With their daily routine, Mulvihill says keeping order is relatively easy. On days where school buses are cancelled, a break in routine sometimes makes everything a little hectic.
For parents with autistic children, Mulvihill recommends taking life step by step, and to take the good with the bad. She also says raising autistic children will increase your level of patience.
“Someone said I had the patience of a saint. I simply said no, I am just a mother.”
For more information, call 416-246-9592 go to www.togetherforautism.ca
Article ID# 988381
From a listmate
Appreciation of Life
It’s easy to get caught up in the bustle of life and it takes an effort to stop and smell the roses. Many on the autism spectrum have a different perspective. For just a moment, come and rejoice in the appreciation of life through autism eyes.
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The illustrated social story book “Playing with a friend AND Winning & losing” is awarded to every customer who spends $30 or more. That’s a hefty $10 saving! This book is perfect for children who are learning to share, be flexible, take turns as well as learning to win graciously and deal with the frustration of losing. Quantities are limited and this offer is valid for the first 250 customers only. Take advantage of this offer now
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Gold launches assistance dogs program for autistic kids
By JANICE ARNOLD, Staff Reporter Thursday, 17 April 2008
MONTREAL — If Nancy Cummings Gold, right, gets her wish, every child with special needs in Quebec who can benefit from the assistance of a specially trained dog will get one – free of charge.
Matching companionable watchdogs with kids who have autism or related developmental disorders has proven to be successful in Ontario for at least a decade, but is almost unheard of in this province.
Gold has created the non-profit PACCK Foundation (Positive Assistance and Companion Canines for Kids), which will receive its first four white German shepherd puppies this month from a breeder in the United States. In about 11/2 years, the dogs will be placed permanently with a family that has a child who can benefit, usually between four and 12 years old.
“The transformational impact of assistance canines on the lives of autistic children and their families is astonishing,” said Gold, PACCK president. The dogs help keep the children safe and increase their capacity to connect with people and their environment. They are a complement, not a substitute, for other therapies, she emphasized.
These dogs are much more than a pet and have a greater array of skills than guide dogs used by the visually impaired.
They are indeed a comforting friend, but they are also trained to help care for the child, keeping him away from dangers that he may be oblivious to, such as walking toward the headlights of a vehicle or into a body of water. The animals are trained in search and rescue, because some autistic children have a habit of running off.
Most amazingly, the dogs interrupt certain self-harming or undesirable repetitive behaviours in the child by nudging him with their nose or paw.
The youngest children are often tethered to the dog by a belt around their waist, while the parent holds a regular leash.
Many children who don’t speak become verbal after getting a dog, or at the least, the dog will serve as “a social bridge” to other people.
“The dog helps connect the child to the world. It is a conduit to other people and places. It’s an enabler,” said PACCK’s executive director Mark Stolow. who has an extensive background in the social service field.
In addition, the dog almost always has a calming effect on the children, and many sleep through the night for the first time.
The dog’s presence is thus a stress-reliever for the whole family.
“Dogs are non-judgmental and always give you positive feedback,” Gold said.
PACCK is working with Cambridge, Ont.-based National Service Dogs, which has placed hundreds of dogs over the last dozen years. The advantages of pairing assistance canines with kids who have special needs have been supported by research at the University of Guelph.
Gold, a dog lover, became aware of the positive impact canines can have on people with disabilities while volunteering in Israel on a Combined Jewish Appeal mission a few years ago. She was assigned to Beit Cohen in Be’er Sheva, a centre that brings in friendly canine visitors for people with disabilities so severe that they could not work in a sheltered workshop.
“It was an inspiration to see the effect of the relationship between human and animal,” Gold said. Eventually, she’d like to bring PACCK to Israel.
Since then, Gold became the proud owner of two abandoned dogs with troubled pasts. She hired Zoë Quinn-Phillips to train Lola and Lucy, with delightful results. The two women became friends and the idea of PACCK began to form.
Quinn-Phillips, Stolow’s wife, is now PACCK’s head trainer and director of operations.
When they arrive in Montreal, the puppies will be placed with volunteer foster families for about 18 months, while they undergo 380 hours of training. At the end, they will be licensed assistance dogs, permitting them to go to public places and use transportation usually off-limits to animals.
They are also being trained bilingually. Although most commands are by hand signals, the dogs will understand French and English.
The dogs will accompany the children they are paired with almost everywhere – to school, appointments, the grocery store, movies.
Families have said that after getting a dog, they were able for the first time to go away together.
Building up a bank of volunteer foster families for the steady stream of puppies expected to arrive in Montreal is the priority right now for PACCK.
“We know it’s hard to have a dog for a year and then give it up. But you can be proud to know that you’re raising a dog that is going to have a career that benefits someone,” Gold said.
Prospective volunteers go through a rigorous application process and those chosen are in weekly contact with PACCK. The family that receives the dog will also be given training and ongoing support, including an annual testing of the dog’s abilities.
PACCK already has a waiting list of families. Eventually, it plans to breed its own dogs.
At PACCK’s official launch this month, an Ontario mother, Maureen, and her 16-year-old son, Brodie, will talk about how their assistance dog changed their lives. He received his first dog as a young child, and now has a second.
“The dog kept Brodie grounded,” Maureen remembers. “It kept him from fleeing into danger and his emotions from peaking. He was able to connect with people and not be afraid of them.
“Even the self-harming behaviours disappeared within a short time after we got Shade. His sleep pattern improved and we all began to feel more at ease. To us, this was a miracle.”
For more information, visit www.pacck.org.
From a listmate
AN AUTISTIC ARTIST.........
LIKE YOU'VE NEVER SEEN !
Click on this link:
from google alert
Now's the time to educate about autism
Still a general lack of understanding about the condition, says mother of autistic boy
By Stephanie Hounsell
Apr 15, 2008
Miltonian Tracy Reigel knows what it's like to have judgmental people silently take in her son's apparent temper tantrums and wonder what kind of a mother she is.
It happens in the mall, in restaurants, in the hospital.
But what those people don't know is that five-year-old Connor is autistic.
His occasionally aggressive behaviour doesn't stem from a desire to get what he wants, but from a desire to communicate and an overwhelming sense of frustration when he can't seem to do that.
With April being Autism Awareness Month, it's Tracy's quest to help educate local residents about autism.
Fortunately, people seem to be far more aware than they were five or 10 years ago, but -- as the above incidents suggest -- there's still a long way to go.
After a few years of becoming incredibly upset when people confronted her about Connor's behaviour, Tracy came up with a unique solution.
AIMS TO EDUCATE
She now takes out her wallet and hands the individual an 'autism awareness card.'
On one side are the words: "My child's behaviour may seem surprising to you." On the other are facts about autism.
"It raises awareness and I don't have to get into a big verbal explanation," she said.
According to Autism Ontario, autism is a neurological disorder that impacts typical brain development in the areas of communication and social interaction.
Recent research has found one in 165 people have autism, says the Autism Ontario website. In Ontario, there are about 70,000 people with the disorder -- some high functioning, some not.
Tracy and her husband, Andrew, knew something wasn't right with their son quite early on.
For the first year of his life, everything seemed fine. But soon after, things seemed to change, Tracy said -- common of autism, where children who appear to develop normally can regress.
There was a real lack of communication -- vocal and otherwise -- and eye contact. Connor didn't respond anymore when his name was called.
His parents initially thought he was hearing impaired, but tests came back normal.
Looking back, Tracy said there were other signs they didn't pick up on, including repetitive behaviour.
Other symptoms of autism, according to Autism Ontario, are limited social interaction, having sensitivities to the five senses, a lack of spontaneous play and anxiety or confusion.
The Reigels received the official diagnosis when Connor was two years old.
The doctor was less than optimistic. He told the parents Connor had severe autism and that he'd probably never speak.
"When your child is first diagnosed, it's devastating because you don't know what the future holds," Tracy said.
She and Andrew believed that early intervention would be key in Connor's development.
Unfortunately, the waiting lists for government-funded Intensive Behavioural Intervention (IBI) are long.
So the Reigels decided to do all they could on their own as they waited.
ARMS HERSELF WITH KNOWLEDGE
Tracy read every book she could find on the subject and attended every workshop she could.
"There's no time for waiting," Tracy said.
She and her husband hired a private therapist and also enrolled Connor in daycare when he was two to help with his social interaction.
Adapting to daycare wasn't easy for Connor. He screamed and cried, and so did Tracy, she admitted.
"But we knew as hard as it was, it was the best thing for him."
After about a year, Connor was accepted for government-funded IBI-based therapy, and he flourished.
Although people often assume kids with autism don't show any emotion, Tracy explained that in Connor's case, he simply needed to be taught.
This past summer, Connor hit a milestone when he told his mom for the first time -- without hearing it first -- that he loved her.
Connor has come a long way. He speaks in 10 to 12-word sentences and is learning to read. He socializes with other kids and is classified as having mild to moderate -- not severe -- autism.
"Yes, Connor has autism, but autism doesn't have him," his mom said.
He's continuing to develop his language skills, although there will be a point when he plateaus, Tracy said.
Two days a week he goes to Hawthorne Village Public School, where he's in senior kindergarten, while the other three he goes to therapy.
"Connor is an energetic, happy, lovable kid," Tracy said.
She believes her son is where he is today because of the early intervention and the way he's worked so hard at the various treatments.
Although challenges abound, there's also a lot of good, Tracy explained.
"Connor has taught me a lot. He's taught me to appreciate the little things in life."
She added it's also brought their family closer together. Connor's sister, eight-year-old Ashleigh, is great with her little brother and has adapted well, Tracy said, adding, "It's been quite the journey."
Tracy hopes families in similar situations will be encouraged by Connor's story.
"I want parents to know that autism isn't the end of the world... I remember when Connor was diagnosed saying to my husband, 'I don't want pity or people saying they're so sorry, because there's nothing to be sorry about.' I wouldn't change Connor -- he's brought us so much joy."
For more information on autism, visit www.autismontario.com.
Stephanie Hounsell can be reached at email@example.com.
From Andrew Kavchak in Ottawa
FeatBC Discussion Board: Room Three: Discussions about Government Topics
Posted by Andrew Kavchak (Kavchak) on Friday, April 11, 2008 - 6:16 am:
On Wedneday an announcement made (see below) that Justice Michel
Bastarache will be retiring from the Supreme Court of Canada. He was
appointed to the Supreme Court of Canada on September 30, 1997.
Some of you may recall that he was one of the Justices who supported
the disgraceful unanimous November 2004 written decision of Chief
Justice Beverley McLaughlin in the Auton case which effectively gutted
the equality provisions of the Charter and rendered them considerably
less than meaningful.
I frequently reflect on the sloppiness of the decision. When I
attended Osgoode Hall Law School in the 1980s many of my professors
routinely made fun of the "Supremes". I used to think that they were
unjustifiably disrespectful...but that was before I found out the hard
way just how truly defective our justice system is. My favourite part
of the decision was where McLaughlin wrote that so much of Lovaas'
groundbreaking work was done in Texas. Since when is UCLA in Texas? It
may sound trivial, but it is just one example of flaws that suggest to
me that the decision was made before the hearing and the briefings
submitted by the families were simply not read. Getting the facts
straight was immaterial detail that should not get in the way of the
court's desired outcome and the whole thing was not even worth some
elementary "fact checking" by an articling student.
Let us all mark and celebrate this retirement as it deserves to be!
Let us further pray that the next judge to occupy the seat will have
the wisdom, courage and sense of right and wrong to be able to
withstand the intimidation and culture of political correctness in
Ottawa and actually believe that "equality" in the Charter might mean
One of the other elements of the shameful treatment of the Auton case
in Ottawa was that the federal Justice Department lawyers intervened
against the kids with autism. At the time the Minister of Justice was
"human rights lawyer" Irwin Cotler. I subsequently sent him a letter
asking him "how could you?", to which he replied that under the
Constitution his job was to advise the government. I gathered that
this meant that his "human rights" work would take a back seat to his
desire for a successful career in politics. His removal from the
Justice portfolio at the hands of the electorate was also an event
that was celebrated in some households!
OTTAWA, April 9, 2008 - The Rt. Hon. Beverley McLachlin, Chief Justice
of Canada, announced today that Justice Michel Bastarache has written
to the Minister of Justice, the Honourable Robert Nicholson, to advise
that he will retire at the end of the spring session of the Court,
effective June 30, 2008. "Justice Bastarache has served on the Court
with wisdom, and made enormous contributions to the Court and to
Canada. He is a valued colleague and a friend, who will be missed by
all the members of the Court", said the Chief Justice.
For his part, Justice Bastarache said, "It is a great honour and
privilege to be asked to be a member of the Supreme Court of Canada.
There are but a small number of jurists who have had the opportunity
to serve their country in this capacity, and to have had the chance to
participate so directly in the development of the law. I am extremely
grateful for the privilege of serving as a member of the Court."
Justice Bastarache was appointed to the Supreme Court of Canada in
September 1997, after serving on the New Brunswick Court of Appeal.
"I know that the Canadian Government will consider the appointment of
a new justice with the care and deliberation required", Chief Justice
McLachlin added. "I am hopeful that the appointment will be made in
time for the fall session of the Court, in October 2008."
For further information contact:
Executive Legal Officer
Phone: (613) 996-9296
Fax: (613) 952-3092
From a listmate
AFASE at school
Advocating For Appropriate Special Education
Saturday, May 3, 2008
10:30 a.m. - 4:30 p.m.
This full-day workshop is designed to empower you by providing current special education
information, strategies, and skills that will enable you to advocate for appropriate special education
programs and services in a way that is both assertive and collaborative
Audience: Parents, Students, Teachers, Educational Assistants, and Community Organizations
Lindsay Moir who is retired from the Ministry of Education is considered to be an expert in special
education issues. He will present an interactive, discussion-based workshop on Current Issues in
Karen Robinson the owner of AFASE at School will present Special Education Advocacy:
Everything you Should Know. Topics include: The Rules of Advocacy, The Special Education
Program, Needs Statements, IPRC's and the Appeal Process, The good IEP with Specific Goals,
Measurable Expectations and ABA methods.
Each presentation will allow time for Q & A
Coffee and pastries, and a light lunch will be provided
Peel Regional Police
Clarkson Community Station
Community Meeting Room
2057 Royal Windsor Dr.
Mississauga, Ontario N5X 1B6
N/W corner of Southdown and Lakeshore/Royal Windsor
Short walk from Clarkson GO Train Station
SPACE IS LIMITED - REGISTER EARLY TO RESERVE YOUR SPOT
*Early bird rate: $80.00
*At the door: $100.00
To register go to http://www.afase. com/Workshop. html
or e-mail: karen.robinson@ afase.com
or phone: 905-427-7524
From a listmate
Teen uses Palmtop to achieve independence
Monday, April 14, 2008 -- Jason Thompson
Through the use of a portable computer called a Palmtop, 16-year-old Kayle Coutie is able to speak for himself.
For children who are non-verbal autistic, the inability to effectively communicate with those around them is often accompanied by a sense of frustration.
However with the aid of assistive devices, an increasing number of children who have autism are finding their voice.
Kayle’s device is similar to a Palmtop one would find in a retail store, but features a durable outer-casing to protect the device and is modified to amplify the sound.
Lynn Coutie, Kayle’s grandmother, says the Palmtop tears down barriers she faces when communicating with her grandson.
“I used to be so black and blue because he’d get so frustrated,” Coutie says. “Now he can tell us exactly what he wants.”
The Palmtop is the latest in a series of tools given to Kayle by rehabilitation staff at Bloorview Kids Rehab in Toronto.
Over time, the devices have become more compact and light-weight and are pre-programmed with an increasing number of features to help Kayle communicate more effectively.
For example, when Kayle enters the first three letters of a word, the Palmtop’s word prediction function provides him with a list of complete words to choose from.
“Before when he couldn’t talk but he could write, people would still look at me,” she says. “Now that the device talks for him, because it has a male voice, people will look to him instead.”
Many kids who communicate with assistive devices share this experience, says Gail Teachman, occupational therapist at Bloorview Kids Rehab.
“That’s a very powerful experience for them in terms of helping them see themselves as someone who could do those things and especially as someone who could do that by themselves,” Teachman says.
Do you have a story you would like to share about how assistive devices are helping children with disabilities? If so, please phone (800) 294-0051, ext. 25 or e-mail jason(at)axiomnews.ca.
Stories are often generated from the feedback we receive. To share your thoughts, phone (800) 294-0051, ext. 25 or e-mail jason(at)axiomnews.ca.
From Sheila White
April 14, 2008
WEAK MINISTER SLOWS AUTISM PROGRESS
QUEEN’S PARK – The McGuinty Minister responsible for autism appears to be “part of the problem rather than the solution” to growing waiting lists, says NDP Children and Youth Services Critic, MPP Andrea Horwath.
While 1,444 children languish on lists, waiting up to three years for autism treatment programs and eligibility assessments, Horwath said the McGuinty government is failing its commitment to them and their families.
“Today I asked pointedly when waiting lists for children’s autism treatment will end. The Minister did not provide an answer even though she belongs to the government who promised to extend autism treatment to all children regardless of age. The Minister’s weakness is the Achilles heel for progress on getting needed services to children with autism,” Horwath said.
“This is not an acceptable way for the McGuinty government to respond to parents and their very real concerns.”
At a recent Town Hall meeting Horwath attended, parents of children with autism described their fears that children were “rotting on the vine” as a result of the government’s slow pace and inadequate investments.
”What is this minister’s plan and what is the timing for clearing the waiting lists for children with autism, or will the McGuinty government continue to leave children, as parents so heart-wrenchingly described that night, ‘rotting on the vine’?” Horwath questioned.
“It is unconscionable that the McGuinty government abandoned so many children with autism across Ontario by letting them languish on growing waiting lists. Notwithstanding what this minister says, the waiting lists are in fact growing for children with autism—1,063 children as of December, plus another almost 400, some 381 just waiting for their assessment. Will the minister guarantee today that the government’s new benchmarks for assessing children with autism are not going to result in a single child being cut off from their current treatment to make room for the 1,444 children on waiting lists today?”
Horwath said she was not impressed that Minister for Children and Youth Services, Deb Matthews, only answered half the question and pawned off the second part to a colleague.
“The one person you’d expect to be backing autism treatment for every child who needs it would be the Minister of Children and Youth,” Horwath commented. “Unfortunately, she’s barely a factor and that’s part of the problem.”
Media contact: Sheila White (416) 325-2777 or (416) 902-0977
From Nancy: BLUE FONTS
Here is the Hansard from MPP Horwath's Question in the House on Monday:
Excerpt from hansard
Official Record of the Ontario Legislature
Andrea Horwath, MPP for Hamilton Centre, asked the following Question in the Ontario Legislature on April 14, 2008, regarding autism treatment waiting lists and benchmarks:
Ms. Andrea Horwath: My question is for the Minister of Children and Youth Services. Recently, at a town hall meeting hosted by parents of children with autism, the minister could not say when waiting lists for treatment would end for children who, as the parents described, were rotting on the vine, waiting for three years or more for treatment. What is this minister's plan and what is the timing for clearing the waiting lists for children with autism, or will the McGuinty government continue to leave children, as parents so heart-wrenchingly described that night, "rotting on the vine"?
Hon. Deborah Matthews: Thank you for the question. I was delighted to have been at the town hall meeting with the Minister of Education to meet with parents of children with autism. I think both of us learned a tremendous amount from them, and it further fuels our commitment to providing better services for kids with autism. Our commitment is well demonstrated. We removed the previous government's age-six cut-off because we don't think a child's treatment should be cut off on the day they celebrate their sixth birthday. We have tripled the spending on autism; we have almost tripled the number of children receiving IBI therapy, but we know that it's more than just IBI therapy that is important to families with children with autism.
Ms. Andrea Horwath: It is unconscionable that the McGuinty government abandoned so many children with autism across Ontario by letting them languish on growing waiting lists. Notwithstanding what this minister says, the waiting lists are in fact growing for children with autism: 1,063 children as of December, plus another almost 400-381-just waiting for their assessment. Will the minister guarantee today that the government's new benchmarks for assessing children with autism are not going to result in a single child being cut off from their current treatment to make room for the 1,444 children on waiting lists today?
Hon. Deborah Matthews: I'd like to ask the Minister of Education to respond.
Hon. Kathleen O. Wynne: When the Minister of Children and Youth Services and I attended the town hall, we talked about how probably the most important thing we can do for children with autism is to help them and their families get the placement that they need, get the service that they need when they need it; so, when those children are very young, to get the IBI therapy. When they are ready to go to school and when they need a transition from that IBI therapy into a classroom setting, it's very, very important that we have the trained personnel in the schools to provide that service. We have instructed school boards to train students. We are providing money in the community and in school boards to train in ABA. There are thousands more people-principals, teachers, support staff across the province-who are able to deal with kids with autism in the school. That's the answer: to get them the right placement when they need it.
This has been shared from FEAT BC regarding Canada AM on Monday, talking about the advocaccy efforts of FEAT BC and their nation wide campaign. To learn more about their efforts, here is their blog link:
April 14, 2008
CTV - CANADA AM
TIME: 08:12:10 ET
Group wants autism covered universally under medicare
O'REGAN: Fighting for autism, a group from BC will be in Ottawa this
morning to launch a nationwide campaign to elect members of Parliament
who will support including autism treatment as part of medicare.
And joining us now from Ottawa to talk about the campaign is organizer
Good to talk to you.
LEWIS: Good morning.
O'REGAN: Firstly, what is the story right across the country? Health
care is a provincial jurisdiction, and I'm just wondering, does it
vary across the country, the amount of coverage for autism treatment?
LEWIS: Well, absolutely. The problem is, autism treatment isn't
covered at all across the country. Currently, across Canada there is a
patchwork of autism services that are not treatment. They're respite
care, babysitting, childcare, those types of things. They are provided
by the provincial social services ministry.
Right now, autism treatment -- science-based autism treatment -- is
not covered. The Canada Health Act is federal legislation, not
provincial legislation. So, we need children diagnosed with autism to
have universal access to health care through medicare.
O'REGAN: Now, you have attempted this, as I understand, at the
provincial level in British Columbia. How effective was that?
LEWIS: Well, we actually sued the provincial government, the BC
provincial government, almost 10 years ago and won at the BC Supreme
Court in the Auton landmark case, which eventually was overturned by
the Supreme Court of Canada. And one of their main arguments was -- or
decisions was -- is that it really is a matter for Parliament to
decide how to spend health-care dollars.
So, we have taken the Supreme Court of Canada at their word and we've
gotten political in a nonpartisan way. So, our campaign is to elect
MPs, regardless of what their party affiliation is, who, if elected,
will support legislation which will amend the Canada Health Act to
include medicare coverage for the treatment of autism.
O'REGAN: What kind of response have you gotten amongst members of
LEWIS: Well, it's very interesting. We started this campaign in the
last federal election just in British Columbia in five ridings where
in the previous election the margin of victory was less than 2
percent. And I have to say, in the five ridings that we initiated this
campaign in it would be fair to say that we affected the vote in at
least two of them.
We have now extended it. We are here in Ontario, meeting with parents
and supporters and looking at some constituencies here. Also in the
So, we have captured attention. The MPs who were elected, who did
publicly support us, have been actively assisting. Such as Peter
Stoffer, Shawn Murphy, Andy Scott, Dawn Black. There are a number of
O'REGAN: So, what you're saying is if people do not support that
position then you are recommending that people do not vote for them?
If this is an issue that they consider a priority?
LEWIS: Absolutely. And I think it's important to understand that this
issue no longer is just pertinent to parents of children with autism.
We had a rally in Burnaby at the beginning of March where 400 people
attended. And 25 percent of those people who attended were not parents
of autistic children. They were other, fair-minded Canadians who are
absolutely outraged that this has not been solved after this length of
After the Supreme Court of Canada decision in 2004, Ipsos-Reid did a
poll: 89 percent of Canadians polled said that autism treatment should
be in medicare. So, it tells you there is this huge disconnect between
the voters and those who govern us.
O'REGAN: Thank you very much, Ms. Lewis, for your time.
LEWIS: My pleasure.
Jean Lewis, Director, BC Families for Early Autism Treatment (FEAT)
And a listmate shared this article, offering more clarification on the vaccine debate and the American court decision:
Will a 9-Year-Old Change the Vaccine Debate?
From the NY Times By Tara Parker-Hope.
There’s no question that the case of 9-year-old Hannah Poling of Athens , Ga. , has fueled the controversy about childhood vacc ines . But what’s less clear is whether it will help unlock the mysteries of autism.
Hannah was 19 months old and developing normally until 2000, when she received five shots against nine infectious diseases. She became sick and later was given a diagnosis of autism.
Late last year government lawyers agreed to compensate the Poling family on the theory that vacc ines may have aggravated an underlying disorder affecting her mitochondria, the energy centers of cells. (To read more about the decision and related stories see articles below.) Vaccine critics say the Hannah Poling settlement shows the government has finally conceded that vacc ines cause autism. But government officials say Hannah’s case involved a rare medical condition, and there is still no evidence of a link between vacc ines and autism.
Hannah’s father, Dr. Jon S. Poling, a practicing neurologist in Athens and clinical assistant professor at the Medical College of Georgia, says the case has shifted the autism debate forever and points to a promising new area of research.
Writing in The Atlanta Journal-Constitution on Friday, Dr. Poling says there is compelling evidence that mitochondrial disorders, like the one his daughter has, are strongly associated with autism.
To understand Hannah’s case, it is important to understand mitochondria, which act like batteries in our cells to produce energy critical for normal function…. Emerging evidence suggests that mitochondrial dysfunction may not be rare at all among children with autism. In the only population-based study of its kind, Portuguese researchers confirmed that at least 7.2 percent, and perhaps as many as 20 percent, of autistic children exhibit mitochondrial dysfunction. While we do not yet know a precise U.S. rate, 7.2 percent to 20 percent of children does not qualify as “rare.” In fact, mitochondrial dysfunction may be the most common medical condition associated with autism.
Dr. Poling urges the Institute of Medicine and public health officials to pursue research into mitochondrial conditions, which he describes as a “breakthrough in the science of autism." He writes:
National public health leaders, including those at CDC, must now recognize the paradigm shift caused by this biological marker with regard to their current position of dispelling a vaccine-autism link. In light of the Hannah Poling concession, science must determine more precisely how large the mitochondrial autism subpopulation is: 1 percent, 7.2 percent, 20 percent?
[Dr. Poling ' s complete article follows this one. ed.)
To be sure, many health experts do not agree with Dr. Poling’s conclusions. The case has “added nothing to the discussions of what causes or doesn’t cause autism,” said Dr. Edwin Trevathan, director of the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention.
On Friday, many of the main players involved in this debate — including Hannah’s mother and her grandparents, prominent vaccine skeptics and some of the government’s top vaccine researchers — took part in the federal government’s first-ever public meeting to discuss a government-wide research agenda to explore the safety of vacc ines .
Another feature added to ASD Movie Day!
Autism Speaks Canada together with Movies for Mommies and Today’s Parent welcome everyone to our ASD Movie Day.
Sunday, April 27 – 10:30 AM
Rainbow Cinemas – Promenade Mall, Thornhill
2 Great Choices:
Horton Hears a Who
Elmo’s World “What Makes You Happy”
Tickets are $6 (payable at the door) but advanced registration is required.
To reserve your seats please call Autism Speaks Canada at 888-362-6227 or email firstname.lastname@example.org
Lights will be up, sound will be lowered – In and Outs OK
Everyone welcome to attend!
The Ontario Autism Coalition has posted the tapes from Question Period on Wednesday, April 2nd, the International World Autism Awareness Day and Taline Sagharian's appearance on the CTV newscasts from that evening......
Bruce has put the videos of the leglislative statements and questions from the 2nd on the website along with the ctv newsnet piece. Take a look http://ontarioautismcoalition.com/content/view/214/31/
This article comes from The Hill Times from Ottawa, and notice how they encourage comment on this story!!!!!!! - don't hold back on this opportunity:
Embassy, February 20th, 2008
Canada Lagging in Early Education Funding
By Jeff Davis
Canadian experts are calling on the government to act quickly to improve the state of early childhood education, saying there is no more effective and efficient investment that can be made to bolster Canadian prosperity after Canada was cited in a recent report as spending far less than other developed countries.
"The best single investment Canada can make for social justice and the optimal development of our children is to get them off to a good early start by building a high quality, evidence?based early child development system," Margaret McCain of the Toronto-based Council for Early Child Development told a Senate committee last week.
"The payoff comes in later life for adults who are healthier, have better life skills and life?long learning capacities, and are able to lead a better quality of life overall," she said. "The payoff is economic prosperity, built upon a base of strong human capital."
The Senate committee on Social Affairs, Science and Technology began its study last week on early childhood education. Senators said this was initiated partly in response to a report from the Organization for Economic Co-operation and Development that found Canada's early childhood education programs lagging.
The 2006 OECD report, entitled Starting Strong II, found Canada spending less on early childhood education and care than its European counterparts, and lacking in national co-ordination.
The study placed Canada last among 14 nations, with total expenditures around 0.25 per cent of GDP on education for 0-6-year-olds. This is far behind Nordic countries like countries like Norway, Denmark and Sweden, who all spent over 1.5 per cent of GDP educating the very young, with excellent results.
Among other recommendations, the report suggests Canada substantially increase public funding of services for young children and fund a universal early childhood services for children between one and six years old.
Dr. Fraser Mustard, the founder of the Council for Early Child Development, is an internationally respected expert on early childhood education, and has helped countries such as China and Australia improve national and regional programs.
He told the committee that new breakthroughs in developmental neuroscience have made it clearer than ever that early education is a key determinant of a person's future.
Dr. Mustard said new studies have found critical developmental periods in the lives of children, if missed, cannot be made up for later in life.
"Once a child falls behind, he or she is likely to remain behind," he told the committee.
Besides lower educational achievement, he said, poor early education raises the likelihood of attention deficit and hyperactivity disorder, autism, anti?social depression and long?run unemployment.
He also quoted a study by Nobel Prize-winning economist Jim Heckman, who found the return for every dollar invested in the preschool period is at least $8.
The way the brain learns to function, Dr. Mustard added, is similar to the way people learn sports.
"If you learn to ski when you're three, you're a better skier than if you learn to ski at 30," he said.
Ms. McCain called on the government to act quickly to improve early childhood education.
"In the past 15 years, a significant body of knowledge and understanding has been generated about the significance of early child development, but there is still, in Canada, a deficit of action," she said.
"The well?being of children is so critical it warrants the commitment of governments, institutions, service providers and, the number one driver, the general public," she added. "Our future and our national prosperity depend on it."
Senators, both Liberals and Conservatives, welcomed and supported the testimony. The committee will issue a report on early childhood education in the spring.
Liberal Senator Art Eggleton agreed investing in early childhood development was a good investment.
"It's a pay now or pay later situation," he said. "It's better to invest money now in early childhood development than it is to pay later trying to correct the problems that develop later in life."
Minister of Human Resources and Social Development Monte Solberg said the government is acting to improve early childhood education in Canada.
"We're absolutely putting resources into it," he told Embassy. "We provide a billion dollars per year in support of the provinces. We increased the amount by $250 million in the last budget to support the provinces when it comes to development of early childhood initiatives and space creation."
Liberal Leader Stephane Dion criticized the government's income support approach to child care provision. He attacked the $1,200 cash per year per child the government gives parents to use at their discretion.
"The government thinks that child care in the mailbox," he said.
Mr. Dion said a Liberal government would take a more institutional approach to improving national child care.
"We need strong child care facilities in Canada and we intend to be a strong partner for the provinces," he said, to create "child care of high quality all across the country."
Comment on this story
This from the FEAT of BC people, they are coming to Ontario and doing some rallies with FEAT Ontario this month:
"Medicare for Autism Now!" Rally
Saturday, April 19th, 2008
2:00 p.m. to 4:00 p.m.
Iroquois Ridge Community Center,
1051 Glenashton Drive,
Oakville, Ontario, L6H 6Z4
Why should you attend?
• Despite a decade of lobbying, collaborating and litigating – autism treatment is still excluded from our universal health care system. Canadian families from BC to Newfoundland and everywhere in between are still bankrupting themselves in order to provide treatment for their disabled children.
• The current and limited patchwork of funding and services provided through the provinces’ social services ministries could evaporate tomorrow with a change of government, or the stroke of a bureaucrat’s pen. No legislation or mandate exists within these social services ministries to deliver health care or to protect and enshrine our children’s medically necessary treatment.
• In 30 years of "advocacy", the only two initiatives which have achieved ANY success in obtaining treatment funding in any province has been litigation, and more recently, focused political action. Both were brought by volunteer parent groups.
• Autism is an epidemic of staggering proportions, it now afflicts one in every 150 children in North America, one in every 94 boys. Autism has become an election issue in the U.S. - Senators Clinton, Obama and McCain have all articulated extremely progressive positions. In 2006, the U.S. federal government unanimously passed the "Combating Autism Act" which allocated $945 million into research and treatment. The U.S. federal government recognizes their responsibility to intervene by acting to avoid a major health and social crisis.
• It is time for our federal government to recognize their responsibility to act! This is not a left or right issue – it’s a right or wrong issue!
• Today, all over Canada, parents of children with autism and growing numbers of fair-minded, but outraged Canadian voters expect our federal government to act. We are letting those who govern and those who wish to govern know they will be held accountable, regardless of party affiliation, at the ballot box in the next federal election.
Who should attend?
You – and every fair-minded Canadian you know!
In Canada, children with autism and their families suffer from political indifference. It will take the sustained energy and dedication of EVERY CANADIAN who desires a just society to correct this injustice. For our children’s sake, and the sake of future generations, we urge you to attend this rally. Please bring friends, family, kids, anyone and everyone you know who is appalled by the gross injustice done to our children every day by the governments of Canada and its provinces.
Come and find out how you can make your vote actually count!
Featured speakers will include:
Jean Lewis – Vancouver parent, B.C. Co-ordinator for "Medicare for Autism Now!" initiative
Harold Doherty – Fredericton parent, Maritime Co-ordinator for "Medicare for Autism Now!" initiative
David Marley – Vancouver supporter/advisor, B.C. Co-ordinator for "Medicare for Autism Now!" initiative
Stefan Marinoiu – Toronto parent, "Medicare for Autism Now!" supporter
Deborah Coyne – Toronto parent, "Medicare for Autism Now!" supporter
Please RSVP a.s.a.p. to: Jennifer O’Brien
For more information regarding "Medicare for Autism Now!" – check out our blog:
Take a look and listen to the speeches presented at our "Medicare for Autism Now!" kick-off rally on March 2nd.
We’re looking forward to meeting you on April 19th!
There was a thread going on the MELIST about ABA studies for older kids. In response, one of the listies on that group set up a website for the resources. I thought I would share that here.... as so often in advocacy efforts we are looking for these types of resources. It's great to have them centralized in one location.
Here is the excerpt from the MELIST:
Seeing the response and recalling similar interest in the past
> elsewhere, it inspired me to put together a webpage that describes
> why ABA is not only for early intervention.
> There are quite a few papers and citations (some full text and
> others as abstract only), and I tried to highlight the ages of the
> students in the studies to show that they were school age or older.
This article appeared this week in the York Region papers:
Autistic youth get into the rhythm
Apr 11, 2008 08:31 PM
Kerry’s Place programs help clients learn life skills
By: Amanda Persico
Sitting by the campfire, someone inevitably pulls out a guitar and the circle of friends belt out the chorus to Neil Diamond’s Sweet Caroline.
There is no campfire at St. Andrew’s Presbyterian Church in Newmarket, where the Music Factor-e group meets every Tuesday afternoon. But group members bang on bongo drums and everyone stops to pipe out the impromptu “ba ba ba” part.
Music Factor-e is one of several social programs hosted by Kerry’s Place Autism Services. This program uses percussion sounds to help autistic youth learn basic social skills and interact with other autistic youths. The 10-week session runs until late May.
As group members become familiar with the song, the individual beats become a harmonious thump.
“You got faster together,” said Ryan Glasgow, an autism support associate and Music Factor-e team leader. “That means you are listening and paying attention to each other. Great job.”
Regardless of musical talent or autistic functioning, anyone can bang to a beat, Mr. Glasgow said. There is no language with a drum.
“Percussion is accessible to a variety of participants,” he said. “With the drumming circle, the group works collectively toward a musical goal.”
Music gives a voice to those without voices. Even to some non-verbal participants.
Alan Poste, 18, joined the group when it started in October. He had perfect pitch when he was younger and music was his retreat, his mother, Adrienne, said.
“With the drumming circle, the group works collecetively toward a musical goal.”
As the years went by, he became more sound sensitive, which is common among some people with autism. He even stopped listening to his Walkman.
“We wanted to re-introduce him to music because he used to love it,” Mrs. Poste said. “He looks forward to going and he’s happy when he comes home.”
For Sarah Jacob, another autism support associate, Alan is one of the group’s success stories. When he joined the group, she noticed Alan would sometimes rock back and forth and plug his ears, showing his discomfort with the noise.
“Now, I only see him do it once, instead of for an entire hour,” she said. “He’s going nuts with it and feels more comfortable with the instruments. That’s my proof.”
Kerry’s Place also hosts other social groups for autistic youths, such as cooking, journalism, rock climbing and fine art. For information on these programs, call Ms Jacob at 905-713-6808, ext. 374 or visit www.kerrysplaceautismservices.org/york.htm
Amanda Persico is a journalism co-op student from Centennial College.
And as the spring school trip season comes upon us, I share this Lindsay Moir article from this week so everyone is fully conversant with their children's rights in regards to inclusion on these trips:
Ask Lindsay Moir:
Inclusion for activities
Friday, April 11, 2008
It is spring and many trips and activities are planned in schools. The weather is nice and the playgrounds have dried up . . . Over the past few weeks I have had several emails and calls from parents of exceptional students related to their child's participation in these activities.
My son really needs the "physical release" of running around at recess. His teacher uses "no recess" as a punishment for incomplete work, bad behaviour etc. Sometimes the whole class is kept in, often the boys are kept in . . . many times after "no recess" my son's behaviours escalate and we have an incident . . . leading to more "no recess", detentions or even suspension. The principal says she "won't interfere in classroom discipline" - what should I do?
I have just been informed that my daughter cannot go on the Quebec trip with her Grade 8 class since the EA would have to be paid HUGE overtime and the board can't afford it. They have said I could go, but I would have to pay the full price ($640). We live in subsidized housing and this is out-of- the-question! Help?
Last week my son's SK class went to the Garden Centre to look at plants. Because he is supported by an EA who also works with other children (at different times), she "could not go" and my son was kept back at school. There was no discussion or consultation - he came home upset about not having a seedling like all his classmates. When I contacted the teacher she was sorry that she had not picked up an extra seedling but was not concerned that he had missed the trip! I am shocked that she felt this way. What now?
As we move towards true inclusion, a few educators do not understand that including an exceptional student in ALL aspects of school life is the goal! Inclusion means that the educator does not even think of solving the logistical problems by denying the student participation in a school activity - the only issue is HOW we will "include" them! I want to state that I have noticed a significant improvement over the last five years. Many administrators and teachers are becoming "inclusive-minded" and the number of times this issue is raised has declined - but it is still out there!
In the first case the student needs the "sensory break" of physical activity to decrease their anxiety and to "get the fidgets out". I firmly believe that there are more behavioural issues when there is an 'indoor recess' (due to rain, extreme cold and/or mud). I believe that ALL students need recess as a physical break as well as a mental one. Even adults benefit from breaks. Industrial psychologists say that productivity in factories improves following a 15 minute break. As a teacher, I put the most intensive academic subjects at the beginning of the day, after recess, or after lunch because I felt that the kids could focus best at these times. As I visit schools I see that this is still common practice. As important as recess is for all students, certain exceptionalities make it more important for students with these conditions. The need for sensory breaks or physical activities is regularly written in to Needs Statements and IEPs. In my mind, recess is a right, not a privilege! If it is in the IEP it is necessary!. . . and not negotiable!Express your concerns in writing to the principal and ask to meet with her to develop a plan to ensure that your child gets the sensory breaks they require. I would really like the principal to recind the "no recess" policy entirely, but if not for all kids, definitely for yours (cite the IEP).
As an hourly paid employee, the EA's contract likely prohibits her from working without being paid. Even if she was willing to accept her regular pay cheque and "volunteer" the additional hours, her union would not likely permit this. Some boards have negotiated special arrangements for overnight trips in their EA contracts, but in most cases they have to be paid for all the hours . . . SORRY! In terms of you going on the trip this is up to you and depends on your family situation, work situation etc. If you can't go, the principal should find and train a volunteer to support your daughter. Neither you or the volunteer should have to pay! Simply put the teachers are NOT paying out of their pockets. If the EA had gone, she would not have been asked to pay. Either the board is paying for staff costs, or more likely, the cost of participating staff was calculated into the $640 cost per pupil. This trip is "co-curricular" and part of the Grade 8 experience. It will be the focus of in class learning both prior to, and after the trip itself - it is essential that your daughter participate.
Sadly, the teacher's response reflects a non-inclusive attitude. The support "problem" was solved by having your son denied participation in the Garden Centre trip. In my experience, many creative principals have provided the support themselves (or covered for the EAs absence at the school). Other times the support comes from a parent or a volunteer. Again the teacher unfortunately, choose the "easy option" and sees nothing wrong with her decision. The principal may not even be aware of what happened. With your son being in SK, there will be many, many more trips in his educational experience. Rather than focus on this incident, focus on developing a protocol or plan for these FUTURE trips (find a solution not blame). I think that you will solve this "oversight" simply by raising the issue and developing a contingency plan!
This resource comes from a Toronto area listmate for everyone in the Etobicoke area.... even if not in that area, by knowing about these kinds of programs, you can take them to your own Parks and Rec staff to develop in your hometown:
For people who live in Etobicoke, this is just to let you know that there is
a Toronto Parks/Rec program for kids with ASD, ADHD and attention
challenges, ages 6-12 years, every Tuesday night from 5-7p.m.
The program is at Hilltop Community School (Royal York and Egllinton area).
For the first hour, the kids do a fitness/body movement/games program in the
gymnasium. The second hour is arts and crafts. You can sign up for one or
the other, or both programs. Although the program has already started, you
can still register your child at this time.
Children need to be able to function in a small group as one on one
assistance is not available. The group is small though.
I am letting everyone know since it was not advertised in the City's Fun
Guide as it is a new program. My children are both participating and love
A listmate shares an information link for an RDI workshop coming up in Toronto: