By
Alliance for families with autism
july 13TH – July 21ST , 2008
Visit
www.autismnewsarticles.blogspot.com
to read archived mail
AFA is experiencing VACATION TIME at random times during the summer.
Please be patient with our mail
Thank you
Trish
*********
Scroll down to see tomorrows event in Toronto
News from the North- From a listmate who is a grandparent-see attached
(This letter was sent to all government officials)
As most of you are aware, we have a grandson that was diagnosed a few years ago with Autism. With the help of the IBI Therapy that he has been receiving in Sudbury, he has progressed dramatically and we expect that he will keep progressing with more therapy.
While I was preparing to write an email about the disappointing news released on July 9th by the Child Care Resourses. (ATTACHED) Please read!!!
During a conference call back in May we were told that there was no need to go Public about the lack of funding for the programs that are run by the Child Care Resources of the Northern Region as the CCR & the Ministry of Children & Youth Services were in negotiations to correct the problem. Then we get the (attached) notice Press Releases.
Again the McGuinty government have broken the hearts of Parents/Grandparents and children that deal with the disorder of Autism every day.
With the McGuinty Government way of dealing with Autism, the real cost will come when Mr. McGunity is in a seniors home and his & our children/grandchildren will have to deal with his mess. Google "PAY NOW OR PAY LATER". and see what is predicted.
Can you just imagine what that cost might be then. 10, 20, 30, 40, 50 years to come.
After being upset by all the above mess that the McGuinty government is trying to side step, and preparing this emnail. I received an email from Stefan Marinoiu's daughter. It's unbelievable but I guess we should expect just about anything from this Provincial Government.
I ask that each of you take the time to read the attachments so that you understand what the Provincial McGuinty Liberal Government is NOT doing about the Autism Crissis. Delaying it until McGuinty is no longer in power. NEXT ELECTION.
Please contact your local media, MP & MPP by any means and express your opinion on how Autism is being dealt with in Ontario.
By all means copy my email contact list and send each of them an email. Please forward my email onto anybody that you feel may be interested.
Thank you for your continued support
Dennis
"SCROLL DOWN"
There is Nothing Stronger than the Heart of a Volunteer
Yours in Safe Snowmobiling Always
Visit: www.rcsasnow.com
Dennis Lendrum
Subject: FW: "HUNGERSTRIKE for AUTISM NOW" sent you a message on Facebook...
> Date: Wed, 16 Jul 2008
> > Subject: "HUNGERSTRIKE for AUTISM NOW" sent you a message on Facebook...
> Lia Margarita Marinoiu sent a message to the members of HUNGERSTRIKE for AUTISM NOW.
>
> --------------------
> Subject: re: STEFAN'S CONDITION
>
> Hello All,
>
> I regret to inform all of you that my father, Stefan Marinoiu, has been diagnosed with depression and is currently being held at North York General Hospital in Toronto.
>
> After my father's hunger strike, several members from the Ministry of child and youth services convinced my father that we would receive immediate help for Simon's treatment (IBI) and that they would do everything in their power to ensure that they would look into Simon's case fully.
>
> To remind you all, Simon's story is as follows;
>
> - Simon was diagnosed at the age of 4 with Autism (Back then, you could not legally diagnose Autism until the age of 4)
> - Simon was put on the waiting list for the IBI therapy, on which the cutoff age was 7.
> - By the time he got to the top of the list, he was 10 years old and considered "too old" for the treatment
> - Approximately 3 years later, the cutoff age for the treatment was removed
> - My family was NEVER informed, by the social workers, behavioural therapists, or the government themselves that Simon was eligible to be PUT BACK ON the waiting list.
>
> As most of you know, my father took an advocacy walk from Toronto to Ottawa from January 31st to February 11th.
>
> After being turned away by the federal government, the decided to take his battle to the provincial government with his 15-day long hunger strike.
>
> The results of his hunger strike were as follows:
>
> Respite care (also known as babysitting)
> And a camp for Simon to go to for half the summer break (No IBI is offered here, again, just a babysitting service)
>
> Now, it is not that the Marinoiu family is NOT THANKFUL for the respite that they are receiving, since we are aware that most families receive close to none.
>
> But that is not what Simon needs, he doesn't need to be babysat, he needs his therapy so that he can become an individual, not another number or statistic.
>
> There are a few members of the ministry who have expressed that they feel that my father's condition is something other than depression.
> As in, they are suggesting that he is psychotic.
>
> Now, yes, maybe a man who would walk from Toronto to Ottawa during Canada's deathly winter may seem a bit crazy.
> And going on a 15 day hunger strike not too long after that may not be the best idea.
>
> But after a LONG discussion with the doctors, my family has been told that my father has been diagnosed with depression. Nothing more, nothing less. He is not psychotic, or crazy.
>
> It's just that after EVERYTHING he's done for his son in trying to get him the help he needs, we have received NOTHING CLOSE to the results promised.
>
> And my father has come to the realization that "The System" has failed him, his son, and the parents of autistic children all across Canada (excluding Alberta of course).
>
> I have received word that representatives from the ministry will be seeing my father tomorrow, Thursday July 17th. I am unaware of the time, but probably during the hospital's visiting hours.
>
> Myself, my family, and my father would appreciate it if all of you could forward this message to as many people as you can, including media contacts.
>
> I would hope that all of you could also take the time to pray for my father's condition.
>
> I thank you all for the support you have shown my father and family throughout the past few months.
>
>
> Sincerely,
>
> Lia Marinoiu
> Autism Advocate
> marinoiu_lia@sympatico.ca
> (416)-412-7656
> --------------------
>
> To reply to this message, follow the link below:
> http://www.facebook.com/n/?inbox/readmessage.php&t=1026962669465
And from North Bay
http://www.nugget.ca/ArticleDisplay.aspx?e=1117361
Autistic kids waiting for help - Add your thoughts
Local agency can’t operate at its maximum capacity . . . and families are suffering
Posted By Brandi Cramer
Updated 4 days ago
Shannon Berger’s three-year-old autistic son is on a waiting list for treatment.
How long he stays there is anybody’s guess.
Ryan Berger was diagnosed with severe autism in September and has been on the Algonquin Child and Family Services waiting list for intense behavioural intervention treatment since.
But the agency is stuck in a game of wait and see.
One of nine agencies in the province providing services to children with autism and their families, Algonquin Child and Family Services cannot operate its autism intervention program at maximum capacity because of a $900,000 deficit.
And there have been no assurances from the Ministry of Children and Youth Services that funding will be forthcoming.
“Historically, the funding is short to meet the target of kids the ministry asks us to provide services to,” said Jeffrey Hawkins, the local agency’s executive director.
It is funded to provide service to 44 children in the Northeast Ontario region. But the waiting list, which can range from anywhere up to two years, includes 40 children.
“There is a fiscal deficit each year which the province has assisted us with,” Hawkins said.
Children and Youth Services Minister Deb Matthews has directed her staff to work with those agencies to find solutions.
“We are accepting that in good faith with further assumption if solutions can’t be found, that any deficit would be offset,” Hawkins said, adding the program costs $3.7 million to run.
And from the St. Catharine’s Standard
Longer wait expected for autism treatment
Posted By By KARENA WALTER and PETER DOWNS
Posted 2 hours ago
Niagara families already waiting an average of two years or more to tap into provincially funded specialized therapy for autistic children may have to wait even longer.
McMaster Children’s Hospital in Hamilton, which co-ordinates the autism program available to Niagara children, says a shortfall of $1.8 million from the province will force it to temporarily stop accepting new children when vacancies open up.
“It’s too soon to tell you how many children and families it will impact,” hospital president Dr. Peter Steer said. “There will be an impact. We certainly won’t be able to look after as many children and families as we did last year. We will be doing everything we can to minimize the effect.”
Autistic children in Niagara won’t be alone facing longer waits for service.
Several Ontario agencies that run similar behavioural therapy programs also say provincial funding shortfalls mean they can no longer afford to take on more children for treatment.
“This is a problem everywhere across the province. We’re not unique,” Steer said. “Every region has got a challenge with their funding this year.”
The autism therapy program run by McMaster — called intensive behavioral intervention (IBI) — covers Niagara, Hamilton, Brantford, and Haldimand-Norfolk.
Bethesda Services of Thorold is contracted by McMaster to deliver IBI treatment to Niagara residents.
The province mandates how many children agencies that receive funding must accept into their IBI programs.
As of the end of March — the last fiscal year — McMaster’s program was at full capacity, providing service to 116 children.
The figure is nearly double the number of kids who were getting IBI treatment through the hospital in 2006, when the program had a cap of 62 children.
*******
Run the dream newsletter
http://www.runthedream.ca/docs/Run%20the%20Dream%20Newsletter%20Vol%201%20Issue%2015.pdf
Feed from FACEBOOK – Jonathan Howard:
Subject: Turn your radios on!
Hi Everyone!
I just wanted to send out a quick note to let you all know that Terry and I are going to be on the John Moore show on CFRB 1010 at 4:30pm TODAY!!!
If you are not in the GTA, you can listen live on line.
Jonathan
And another email from Jonathan
Jonathan Howard sent a message to the members of Run the Dream.
Subject: For those of you in the Golden Horseshoe
"Check out our Jazz Brunch with the Honourable Lincoln Alexander on July 27. Details on the event listings."
And another
Jonathan Howard sent a message to the members of Run the Dream.
Subject: Run the Dream Toronto Harbour Dinner Cruise with Damon Allen - July 31
"Here's the hottest ticket while we're in Toronto. Mariposa Cruises is graciously sponsoring an evening dinner cruise on July 31 to raise funds for Run the Dream. Damon Allen is joining Terry and I on the cruise to show his support for the cause and for us. What a deal! For just under $75 per person you get a great dinner, great views of thei City, and a fantastic opportunity for 3 hours in a very small group (170) to chat with Damon and many other interesting people who'll be on-board. Get on this one quick, it will sell out fast! Thanks again for all your support as Terry and I "Run and Roll" the dream through Ontario!"
Run the Dream Kitchener Waterloo, and upcoming to Sudbury
Run The Dream in Waterloo Region
The AFA and volunteers with the Waterloo Chapter of Autism Ontario are working quickly to make sure that Jonathan’s welcome to Waterloo Region is the best it can possibly be. Jonathan is scheduled to leave Rockton early in the morning on Monday July 28th. He and his travelling team will run up highway 8 through Cambridge and Kitchener with the idea of finishing for the day in Waterloo at King and University Ave.
At KidsAbility, a barbecue (including gluten free food), a Mayor’s welcome, donation challenges, face painting, a fun castle, the Mom and daughter musical duo Kaleidoscope Ride, and lots more will be waiting to get the fun started at 4 p.m.
KidsAbility has long been recognized as a major facility serving all the special needs children in the Waterloo Region and many of those – including my own grandson Ian – have autism. We were so pleased to have the agreement of KidsAbility to host our very special event for us. We could think of no more appropriate facility to welcome Jonathan to our region.
John “Poppa” McVicar
Co-Founder/Executive Member
The Alliance for Families with Autism
Kitchener ON
AND in preparation for the Sudbury stop for run the dream, this memo sent to one schoolboard (others to follow), agencies and the university
Good day,
Jonathan Howard, a 24 year old man running across Canada to raise awareness and funds for Autism Research, follow his journey here:
www.runthedream.ca is scheduled to arrive in Sudbury- August 13th. Time, location TBA.
Dream As Though You’ve Never Failed
Run The Dream is a coast-to-coast solo run across Canada by Jonathan Howard, a 24 year old resident of Mississauga, Ontario to raise awareness about Autism Spectrum Disorders (ASD) and a targeted $2.5 million, in support of charities that work to assist children with ASD and their families. Jonathan started his run in St. John’s, Newfoundland on March 25, 2008 and will finish in Victoria, British Columbia in December 2008. In this time span, Jonathan will run approximately 8,500 kilometres, and visit more than 650 communities in 10 provinces.
Jonathan is proud to dedicate his run, and his efforts to raising awareness and charitable donations to support the people who dedicate their lives turning the dreams of children with ASD, and their families, into miracles and abilities.
Contact us for more information or explore our web site and return regularly to learn more about ASD; the people and organizations behind Run The Dream; to learn when Jonathan will be in or near your community; keep updated on Jonathan’s progress and the activities that are happening on-the-road; learn about occasional special offers from our sponsors; and to donate to the cause. Our site will be updated frequently – please return often.
Autism Coffee Chat, www.autismcoffeechat.blogspot.com
a Sudbury-based parent driven support group, alongside the Special Olympics Sudbury will be preparing a media release - Watch your in-box for it.
We invite you, members of Greater Sudbury City Council, Rainbow District School Board, and friends to this event.
More details to follow.
The website www.runthedream.ca
has a charitable registration number.
For official donor information, your contact is:
Alison Pickard – General Manager, Beneficiary, Sponsor and Donor Relations
1-888-507-5885 ext. 3
alison.pickard@runthedream.ca
Have a great day!
Trish Kitching
ktchmeifucan2002@yahoo.ca
******
Google alert
Bricks and bouquets
OPINION
Posted 2 days ago
A double brick to the Ministry of Children and Youth Services and Algonquin Child and Family Services.Though it is unclear who is to blame, the fact the local agency is $900,000 in debt is doing no favours for the more than 40 autistic children on a waiting list for much needed therapy. To add insult to injury, the waiting lists can range last up to two years.
Some parents are left with no other alternative but to pay for services out of pocket.
To the provincial government, which spent thousands of taxpayer dollars removing an alligator boat to bring it to Marten River Provincial Park last year.Less than a year later, it announced the boat will be transported back to where it was found in Connaught, about 30 kilometres from Timmins. With the price of fuel, the hefty cost of transporting the alligator boat is unknown.
To the many residents within the riding who made donations in recent weeks to a book drive organized by Nipissing- Timiskaming MP Anthony Rota for Canadian troops serving in Afghanistan.With some 6,000 titles collected, the initiative defied all expectations to allow the men and women serving overseas a chance to briefly escape from their war-torn surroundings into the pages of a good book.
To Nicole Edworthy and other dental hygienists for taking their services on the road to serve people who have mobility issues.Edworthy launched her program recently after Ontario opened the door to such a service last fall. British Columbia and Alberta also allow hygienists to practise outside an office.
For people in wheelchairs to come in for a cleaning at an office, they need to find one that's wheelchair-accessible and then need to arrange transportation and then find a caregiver who will go with them. It's very difficult," Edworthy told The Nugget.
****
From AO Toronto
Hi there,
My name is Marti Veliz and I am the Co-President of the Toronto Chapter of Autism Ontario .
Nancy, you will remember me from Autism Speaks where I served as Volunteer Management for the first 3 years.
I’m reaching out to ask if you would kindly send this message to all your email contacts.
The Toronto Chapter of Autism Ontario will be hosting its first Movie Day on July 27, 2008 at the Rainbow Cinema, Promenade Mall, I Promenade Circle, Thornhill ON (located on Bathurst north of Steeles). The featured movie is “Wall-E”*, doors and concession open at 9:30 am and the movie starts at 10:00 am.
Cost: $6.00/person for chapter members (and immediate family) and $7.00/person for non-members.
Come and enjoy a great movie, relax and be among friends.
Please register in advance by emailing: Toronto@autismontario.com or call (416) 489-0702.
(*in the event Wall-e is no longer being shown then the featured movie will be “Space Chimps”)
I’m enclosing a flyer with all the details.
We at the Toronto Chapter would really appreciate your kindness and support.
Thank you.
Marti Veliz
Autism Ontario – Toronto Chapter
Co-President
****
http://www.livescience.com/strangenews/080717-bad-psychics.html
Psychic Nearly Destroys Family
By Benjamin Radford, LiveScience's Bad Science Columnist
posted: 17 July 2008 08:56 pm ET
Many people go to psychics for a handful of typical reasons. They want to know if they will get their dream job soon, or make a big move, or end up with the hunky new guy who seems shy but might just be The One.
Most of the subjects are personal, minor, and relatively inconsequential. If the information seems valid, then the client is happy. If none of it comes true, then the subject just chalks it up to a bad reading and only loses a few bucks. No real harm done.
But what happens when the psychic lies to the client (or is wrong), telling her information that is not true about something with real-world consequences?
Consider the case of Colleen Leduc, a single mother of an autistic eleven-year-old girl in Barrie, Ontario. On May 30, she left her daughter Victoria at her elementary school. Leduc was soon called back to the school urgently, and confronted by the principal, Victoria's teacher, and a teacher's aide (educational assistant, or EA). Puzzled and alarmed, Leduc asked what was going on. The group told her that they believed that Victoria was being sexually abused. They had contacted the Children's Aid Society, a case file had been opened, and her daughter might be taken from her "for her own safety."
Leduc was shocked by the explanation: "The teacher looked at me and said: 'We have to tell you that Victoria's EA went to see a psychic and the psychic asked her if she works with a little girl with the initial V. When the EA said yes, the psychic said, 'Well, you need to know that this girl is being sexually abused by a man between the ages of 23 and 26.'" The EA reported it to the teacher, who then went to the principal, and so on.
Because Victoria is autistic, the child couldn't speak for herself about the alleged abuse. Leduc didn't believe the psychic's allegations, and said they could not be true since her daughter did not even come in contact with any men of those ages. Furthermore, Leduc could prove it: Because of Victoria's disability, Leduc had equipped her daughter with a GPS tracking system and a continuous audio recorder. A review of the audio proved that at no point was Victoria sexually abused in any way by anyone.
The case was eventually closed, but Leduc was stunned that it had gotten as far as it did based on such dubious evidence. The psychic has not been identified nor arrested for providing false report of a crime. (For more on this, see www.WhatsTheHarm.net, a web site the tracks the damage done by psychics.)
If you believe that psychic information should be taken seriously, consider that at any time, you could suddenly be accused of anything from murder to rape to child molestation on nothing more than the word of someone who claims to get messages from supernatural sources. Psychic powers have never been proven to exist, much less provide reliable, valid information.
Some psychics are careful to claim that their readings are "for entertainment purposes only," tacitly admitting that their information should not be taken seriously. Most, however, are happy to do their work for paying clients and accept no responsibility for the truth of their information. If you consult psychics, the next time you meet with one, ask him or her to promise in writing that what they are telling you is true and accurate. I predict you won't get any takers. Ask yourself why they will take your money but not promise to give you the truth.
*******
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20080720/ont_autism_080720/20080720?hub=Health
agencies
Updated Sun. Jul. 20 2008 12:30 PM ET
The Canadian Press
TORONTO -- The Liberal government is failing to live up to its promises to adequately fund early therapy for autistic children, forcing some service providers to turn away families who've waited years for an expensive but crucial treatment, agencies say.
Child Care Resources, a non-profit agency in northern Ontario, will be facing a $2.5-million deficit by the end of the year if the province doesn't deliver promised funds that would cover the cost of providing intensive behavioural intervention (IBI) therapy, said Maxine King, chairwoman of the agency's board of directors.
"Our backs are against the wall at this point, as far as getting further and further into debt," King said in an interview from Sudbury.
"We knew that if this didn't get resolved, that we have a very small window of opportunity to make an immediate change."
For over a year, the Ministry of Children and Youth Services has instructed the agency to provide services to more children with the promise that additional money would follow to cover the extra costs, King said.
But officials now say the ministry doesn't have the funds to meet that shortfall, leaving Child Care Resources in the lurch with a $122,000 deficit, she said.
Children who are currently receiving help won't be cut off, but to avoid widening its deficit, the agency has no choice but to stop accepting more children who need the therapy, King said.
Some families may now have to wait up to two years for IBI therapy, rather than six months, she added.
"That's the saddest thing," King said.
"This, for many of them, was the light at the end of the tunnel - knowing that their child was on a waiting list and that they would be able to, hopefully in the near future, be receiving this therapy."
Other agencies also say they can no longer afford to provide the therapy to more children.
Markham-based Thames Valley Children's Centre, which operates in southwest Ontario, found a way to balance its books but only has enough funds to maintain its current level of service, said CEO Dr. John LaPorta.
The agency currently delivers IBI therapy to 87 autistic children, but won't be able meet its target of 101 kids this year as set by the province, he said.
Algonquin Child and Family Services, which helps to autistic children in northeast Ontario, is facing a $900,000 deficit, although it's working with the province to deal with the shortfall, said executive director Jeffrey Hawkins.
Children and Youth Services Minister Deb Matthews said provincial funding for autism services has kept pace with the number of children receiving IBI therapy, which reached 1,400 this year. The funding has more than tripled to $150 million this year from $44 million in 2003, when the Liberals was elected, she said.
But Matthews said she's also "very concerned" about the deficit at Child Care Resources, and has appointed a team to investigate why the agency is facing financial troubles.
"I've got very good people going in, because we have to get to the bottom of it. We have to understand it," she said.
"But until we get the information we need, I don't think it's fair to families to start talking about service cuts."
Surrey Place Centre in Toronto, which provides services to 330 autistic children, is not facing a deficit, said Elizabeth Scott, the agency's vice-president of autism services. It's found ways to cut costs, such as creating classrooms where children can receive IBI therapy.
Critics warn the backlog will lengthen an already growing list of 1,100 autistic children who are still waiting to receive the therapy.
"It's obvious that the Liberal government is breaking its promises on autism," said NDP critic Andrea Horwath.
"It looks like the people holding the bag are these agencies - these not-for-profit agencies - that are going to be stuck having to decide and having to be the bearers of bad news that the government hasn't lived up to its promise."
Stacey Sayer, a 38-year-old nurse in northern Ontario, said she's waited two years for her 9-year-old autistic daughter Maggie to receive IBI therapy and there's still no end in sight.
The closest place where Maggie can receive autism services is in Timmins, an hour-and-a-half drive from their home in King Kirkland, a small community east of Kirkland Lake. The family also makes frequent trips to North Bay, Toronto and Ottawa to meet medical appointments for Maggie, who also suffers from Down Syndrome among other disabilities and needs constant care.
There are IBI therapists in Kirkland Lake, but Maggie can't receive the therapy until she makes it to the top of the wait list, said Sayer. And Maggie can't move up the list until the therapy is provided to another autistic child in Kapuskasing, which doesn't have workers to provide the therapy, she said.
"We're very worried, yes, that time is ticking away and we're not getting what we need, and she's not getting what she needs," Sayer said.
"We're worried about her whole future and what's going to happen to her in the end."
*******
From our AFA Member: Pat Lalonde! WAY TO GO ONTARIO!
Good Afternoon,
We had the good fortune to host the Run the Dream here in Kingston. Running
along side Jonathan and Terry was Jay Serdula. Jay is scheduled to start
his Marathon Swim on July 28th, 2008 from Niagara on the Lake. It is my
understanding that Jay's team still needs volunteers. I have include the link to
his website below.
Jonathan and Terry were both very supportive of Jay when they were here in
Kingston!!! Truly these are 3 very amazing men. I am hopeful that in all of
our excitement with Jonathan and Terry and the Run the Dream, that we will
not forget Jay Serdula!!!! If you live in the Niagara on the Lake area, please
come out and support Jay on July 28th.
We Kingstonians are very proud of Jay!!!!
_About Jay Serdula « Swimming Blue_
(http://swim4asperge rs.wordpress. com/about/)
Cheers,
Pat La Londe
*****
Nancys list
I apologize that I have been mostly offline for the past two weeks, we have had some extended family challenges that have been quite demanding on us. I hope to be back to things as usual by next week.
Run the Dream is working it's way across Ontario, please check out their website to follow Jonathan - he is being tracked by GPS. There are many fabulous events happening in many communites across the province. Jonathan will be starting his day in Durham Region on Friday, June 18th and make his way across the GTA, through Peel, Halton and Hamilton areas in the coming days. The website is listing where Jonathan will be and the events being held.
www.runthedream.ca
Nancy
---------------------
Until I am back to speed, here are some articles that have come across my inbox that are of great interest to share:
Interesting info shared from the research world.
A summary from a professional shared for the list: It’s a very neat article. Basically, the idea is that the abnormal genes are ones that are affected by neuronal activity. Therefore, continuously activating those neurons (e.g. ABA ) can change how the genes are expressed and therefore change the expression, in theory, of the autism symptoms.
It is much more complicated than that, but that is a 25 words summary.
http://www.sciencemag.org/cgi/content/short/321/5886/208
---------------------
And here is an ABC Newscast:
http://cosmos. bcst.yahoo. com/up/player/ popup/?cl= 8763620
--------------------------
---------------------------
From the Montreal Gazette:
More than one approach to autism
FACING LONG DELAYS for diagnosis and provincially funded therapy, couple turned to More Than Words therapy for son
CHARLIE FIDELMAN
The Gazette
Friday, July 11, 2008
Christine Booth first knew something was terribly wrong with her young son when she saw him run to the television to watch his favourite movie, The Incredibles, plaster his face to the screen and flap his arms.
"He was nose to nose with it, watching the lines and the pixels, and he was hitting the TV so hard I worried it would come tumbling down," Booth said. "Someone mentioned autism and the alarm bells went off in my head."
Autism spectrum disorder is a common neurological condition affecting one in 165 children, mostly boys. Symptoms vary, but many have trouble communicating and forming relationships. Its causes are not known.
An estimated 600 Montreal area children with symptoms of autism are facing two-year delays for diagnosis and government-funded therapy.
Rather then wait, Booth and her husband, Robert Ménard, of Hudson took action. They put Alex, then 21/2, into private therapy - without an official diagnosis first.
"My brother's son is autistic and he's a year and a half older," Booth said. "I'd seen similarities."
Alex didn't babble like a normal child, and he had uncontrollable tantrums. He hardly looked at his parents and he preferred to be alone in his room.
"Imagine if someone put duct tape over your mouth and you had to carry on," Booth said.
"You'd be very frustrated. As a parent you want to alleviate that. Why wait for a diagnosis?"
As delays mount, parents are tapping into alternative forms of treatment.
One approach that is getting serious attention is called More Than Words, and parents like Booth and Ménard swear by it.
Developed by the Toronto-based, non-profit Hanen Centre, which provides early language intervention programs around the world, the method is a training program for parents.
At its core is the belief that, as the most constant person in their child's life, parents know their children best, said Fern Sussman of the Hanen Centre and author of More Than Words.
The More Than Words method shows parents how relate to their children "so they are not so dependent on therapists," Sussman said.
"Little 2-year-olds sitting at tables being drilled, that's not how children learn language," she said.
Several U.S. universities are researching the method, and the Montreal Children's Hospital - in conjunction with the McGill University Health Centre - is to issue results of a major study on the Hanen method this fall.
Joining six couples, Booth and her husband attended the More Than Words course in Montreal with Hanen expert Nancy Ship.
Alex, now 3, isn't speaking yet, but the eight-week course has had a huge impact, Booth said. "He's much happier and the training is giving us some control."
The first thing they asked Ship was what to do about the TV.
"He didn't want anything but the TV," Booth recalled.
Ship told them to get rid of it.
She then coached them on developing "play" based on the 400-page, illustrated Hanen handbook that comes with the course. It isn't available in bookstores.
Booth and her husband now use chase and tickle games with Alex, plus sign language, facial expressions, gestures, songs, homemade toys (a plastic bottle filled with rice) and a Velcro board with pictures of juice, an apple or milk.
"Now if Alex wants something, he'll take it off the picture board," Booth said.
"You're getting feedback from your child and there is a back and forth going on. Before, he'd just scream because he's not understanding what you want and you don't understand what he wants."
With tickle and swing games, Alex learned to make eye contact and to communicate that he wants "more."
"Fun is involved, so it doesn't seem like learning or work," Booth said.
"And it's the child making the choices, not you."
Following Ship's advice to take their cues directly from Alex's interests, Booth downloaded music soundtracks from her son's favourite films.
"He started dancing and that was our biggest connection with him," she said.
Parents in the program are encouraged to create their own books, songs and games to share with their children.
The Children's Hospital's lead autism researcher, Eric Fombonne, chief of pediatric psychiatry at McGill, said it's too early to say whether More Than Words is effective or even better than no treatment at all.
Of the 350 children assessed annually at the hospital's autism clinic, 72 participated in the Hanen study last year.
"Parents loved it," Fombonne said of the Hanen method.
"It gives parents strategies while waiting for (therapy). The training is brief, but the effects are lasting - if they continue to use the strategies."
But most parents don't know about it.
Behaviour therapy is considered the treatment of choice and it is the only program the province funds to treat autistic children under 6.
In Ontario, the method is considered an effective "language initiative" and is subsidized.
Although many children benefit from behaviour therapy, it has been criticized for relying heavily on a system of drills and rewards, resulting in appropriate but robotic behaviour, groups of parents and therapists contend.
Psychologist Katherine Moxness dismissed the notion that behaviour therapy churns out little robots.
Speech and behaviour are in different therapeutic camps and that has been an issue for decades, said Moxness, director of professional services at the Gabrielle Major, Lisette Dupras and West Montreal Rehabilitation Centres, which together treat about 75 per cent of children with autism in Montreal.
Because autism is a disorder that touches many areas, "you need a comprehensive approach, and to me Hanen doesn't cover it," Moxness said.
"Hanen won't hurt a child, but in my opinion it's not comprehensive enough and it's not quantifiable."
The field is fraught with divisions, said Ship, an outspoken, 79-year-old speech pathologist from the defunct Baldwin Cartier School Board.
"It's a sad story," said Ship, now a consultant for the West Island Association for the Intellectually Handicapped and the private Pat Roberts Centre for special needs children.
"It reminds me of what happened with the deaf population years ago. The oralists don't go near sign language and the sign language people said don't go near the oralists.
"This is not a skills-training course - it's a connecting, communication course," Ship said. "And because of that, results are difficult to measure."
Ship coaches about 20 parents a year. To avoid creating another waiting list, she doesn't advertise. Parents find her by word of mouth.
Some try many methods of dealing with autism simultaneously. Booth hired a behaviourist to come to the house once a week to work with her son while training on Hanen.
Halfway through the course, Booth and her husband got a preliminary assessment from the local CLSC psychologist.
Alex's autism was confirmed.
The family is now trying a treatment called relationship development intervention, a relative and unproven newcomer to the autism field. It's also costly, starting at $2,500.
"They say that the early years are crucial, and if something is going to work, we don't want to miss the boat," Booth said.
Kathleen Provost of Autism Society Canada noted a lack of consensus among experts about the best ways of dealing with the condition.
"What we have the most researcher and information on is behaviour therapy," Provost said.
The society does not endorse any method.
"Some of it is new and we don't have enough information," Provost said. "We leave it up to the parents to make decisions."
cfidelman@thegazette.canwest.com
Information on More Than Words is available at the Hanen Centre. www.hanen.org
For early stimulation programs, call the West Montreal Rehabilitation Centre, 514-363-3025, and ask for the access-to-services department.
The Pat Roberts Centre offers early stimulation for a fee. Call 514-696-5144.
West Island Association for the Intellectually Handicapped, 514-694-7090, Local 14, or visit www.wiaih.qc.ca
© The Gazette (Montreal) 2008
---------------------
In response to the above article, Andrew Kavchak wrote the following letter and encourages others to also speak up:
Dear Autism Society of Canada,
I would like to ask that the ASC please issue some sort of clarification on its website regarding the recent quote in the newspaper in which an ASC official is quoted at the end of the article and the ASC is represented as not endorsing any method of treatment.
This is really a big deal. Please do not ignore it. This kind of lack of consistency, clarity and specific purpose and meaningful objective is one of the reasons why those with autism who could benefit from evidence-based treatment have not been able to access it in this country.
For years the ASC has stated that it supports "evidence-based treatment", including during their slideshow presentation by the former President Mr. Zwack to Parliamentarians in the West Block in 2004 (which I attended). Yet, every time that I asked the former manager of the ASC to specify which treatment does the ASC consider to be "evidence-based", she refused to go into details. I remember once reading an ASC document that stated "for example, ABA", which implied that there was something else that was evidence-based besides ABA. When I asked about that I never got a reply.
Please see the insightful commentary on this matter at the blog below.
http://autisminnb.blogspot.com/
With respect to the validity of treatments and the identification of the "evidence-based" one, you must surely by now be aware of the recently published guide by Dr. Sabrina Freeman (see http://www.skfbooks.com/). How can anyone who has gone through the book and is familiar with the material suggest that the current state of science and treatment is "not clear" and that there is insufficient information to endorse "scientifically validated and evidence-based" treatment?
Incidentally, when Jonathan Howard ran to Parliament Hill on June 30, I was there to welcome him with a large banner which stated "Medicare for Autism Now!". This was an important day in my family's life because it was the same day that my own son was having his funding for treatment cut off by the Ontario "social services" department, or whatever they call themselves now. There were no other autism signs or banners on the Hill. The picture of Jonathan with the banner is on Jonathan's blog, as well as a recent edition of his newsletter. Although the ASC took several pictures of the event, including both with an without the banner, a picture with the banner does not appear on the ASC website. Is there any specific reason why the picture with the banner is not on the website or was it an inadvertent oversight? If so, any chance that you may put the picture on the ASC website? Is getting autism treatment in our public health insurance program a problematic issue for the ASC? If so, why?
Thank you for your consideration of these matters .
Andrew Kavchak
Ottawa
-------------------------
-----------------------------
From the York Region papers:
Keswick High grad trains to help people with disabilities
Samantha Kovach
Published on Jul 16, 2008
That’s why the Keswick High School graduate went after, and earned, a spot in Seneca College’s two-year college vocational program.
The Grade 12 student wants to be a child and youth worker and chose Seneca because it was one of the only colleges offering this type of program.
He realized this is what he wanted to pursue through Keswick High’s co-operative education program.
Under that program, he spent time as a teacher’s assistant at R.L. Graham Public School.
“I have a form of autism and I know where the students are coming from,” Shawn said.
“I know if I become a teacher, I am going to be able to help people and make a difference in their lives.”
This program, at Seneca’s Newnham Campus in North York, is a unique one that is harder to get into than most programs.
“Shawn is someone who has worked very hard to get where he is and he is an extraodinary student,” Keswick High teacher Julie Lemire said.
“He did amazing. He is the nicest person and tries the hardest of any student I have ever met,” special education assistant Dianne Day added.
“Shawn is going to do really well next year and I am really proud of him.”
-------------------------
From Nanimo, BC:
Mom upset autistic son was turned away from camp
Darrell Bellaart
Daily News
Saturday, July 12, 2008
Six-year-old Elijah Pelletier plays pretty much like any other six-year-old boy. He's happy, exuberant and outgoing.
It's heartbreaking for Suzanne, his mother, telling him he can't join his friends at summer camp.
The camp, run by the non-profit Morrell Nature Sanctuary Society, refused to take him after learning he has Asperger's syndrome, a form of autism that affects social skills, but usually leaves other faculties intact.
"We went to go to sign him up Monday morning and I had explained that Elijah has Asperger's and if necessary he could have an aide with him," Suzanne said.
Paul O'Dell, society manager, told her he'd speak to the camp staff members about Elijah's condition and get back to her.
"He ended up calling me back at two o'clock and said that they would rather not have Elijah. Then I asked why and he said because his staff is not trained. I said I have an aide worker who will look after him and he still said no. I don't get it."
Elijah, who was looking forward to spending several weeks at camp with his peers, couldn't understand.
"He was very upset," she said. "He just kept saying: 'Why, Mommy? Why Mommy?'"
His disability is hardly noticeable. Though Asperger's falls under the broad category of autism spectrum disorders, he doesn't fit the stereotypical picture of the non-communicative autistic child. He's spunky and self-reliant.
"It doesn't show up when he's just doing stuff, but if you sit down and talk to him, you'd see he's really smart," says Suzanne. "He doesn't always say things that are age appropriate and that's what Asperger's kids are like. He's like a four- or a five-year-old."
He doesn't make friends easily with children his own age. He gets along best with younger children, or adults. He tends to focus on certain things.
"Right now it's mammoths." That and wondering why he can't go to camp with his friends.
O'Dell said the society has no problem with special needs children attending camp.
"We have five mentally challenged people meet with this group every Monday," O'Dell said. "They come with two workers and we gladly welcome that. We do school groups in the spring and the fall. One of the questions we ask when they book is: 'Do you have children with special needs?' If the answer is yes, (we ask) how many workers do they have with those children?
"We do not have the capabilities to deal with children with special needs, but we do not turn children away. If they would like to bring their child, they have to bring a special worker with them."
Pelletier said she made it clear Elijah would have an aide with him, and she's frustrated.
"The frustration is when you're given an extra supportive worker to help with your camp, you shouldn't turn that away," she said.
Roz Ingram, spokeswoman for Community Living B.C., the provincial agency responsible for services to children with disabilities, wouldn't comment specifically on Elijah's case, but she said the province provides up to $6,000 for children six and older, for assistance with autism spectrum disorder, in addition to services provided through school boards
"CLBC's role is to promote inclusion within communities for individuals with developmental disabilities and children with special needs," she said in a prepared statement. "Being included means that all people - including those who live with a developmental disability -- have a variety of opportunities to contribute to their communities."
DBellaart@nanaimodailynews.com
250-729-4235
© The Daily News (Nanaimo) 2008
Attached to this mailing is a flyer sent out by Unity for Autism, regarding Fall 2008 Horse Program for children and adults with special needs in the Stouffville area.
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Toronto Autism Ontario plans a movie day:
A Movie Day put on by Autism Ontario – Toronto Chapter
Please circulate this information to your families/contacts.
The Toronto Chapter of Autism Ontario will be hosting its first Movie Day on July 27, 2008 at the Rainbow Cinema, Promenade Mall, I Promenade Circle, Thornhill ON (located on Bathurst north of Steeles). The featured movie is “Wall-E”*, doors and concession open at 9:30 am and the movie starts at 10:00 am.
Cost: $6.00/person for chapter members (and immediate family) and $7.00/person for non-members.
Come and enjoy a great movie, relax and be among friends.
Please register in advance by emailing: Toronto@autismontario.com or call (416) 489-0702.
(*in the event Wall-e is no longer being shown then the featured movie will be “Space Chimps”)
We at the Toronto Chapter would really appreciate your kindness and support. If you can make it out for the movie, we’d love your support.
Thank you.
-------------------
Received from a listmate and another list:
Good Morning,
Jonathan and Terry will be in-studio and on the air live this Monday July
21st at 4:30 p.m. on the John Moore show on CFRB 1010.
For those not living in the listening area, you can listen live on the
internet at CFRB.com
To following Jonathan and Terry on their run across Canada, check out the
Run the Dream website at _www.runthedream. ca_ (http://www.runthedr eam.ca)
--------------------
A note from the parent of a child with autism, Toronto City Hall on July 22nd, please try to spend your lunch hour meeting Jonathan and hearing Luke!!!!!
Luke is going to be giving a speech welcoming Jonathan Howard at the Toronto City Hall event on the 22nd at 12 noon -1 pm. If there is anyone in the downtown core who can come over on their lunch hour that would be great. I hope people will come out as media will be there and I think it is important for our community and extended community (people who know people with Autism, or families with children with Autism) to just give a few minutes of their time. Mr. Howard is meeting with all premiers and opening other doors perhaps not yet accessed in raising awareness in Canadian homes about issues faced in Canada around ASD’s. Luke has been following Mr. Howard’s journey on face book as you know and is preparing now (using IBI) to prepare for his first public speaking engagement. He will be speaking on behalf of his fellow compatriots about dreams and journeys. Hope people can spare a few mins on their lunch hour or just come down.
www.runthedream.ca
From the Toronto organizer for Run the Dream and a flyer attached:
Greetings!
Run the Dream has officially arrived in the GTA -- today at 12 noon, Jonathan and Terry met the Mayor of Whitby and the GTA festivities do not end there!
Please find attached the GTA event listing! Great events such as a Run with Jonathan and Terry in to Toronto (Sat, July 19), reception at the University of Toronto (Mon, July 21, 5pm) and an official Welcome to Toronto at City Hall on Tues, July 22 is taking place! Also July 26-27 marks a weekend for Autism in the Burlington, Hamilton and Ancaster area!
Tuesday, July 22, from 12-1pm is the Official Run the Dream Welcome to Toronto Event at Nathan Phillips Square, main stage!!! Kerry Joseph, starting Quarterback for the Toronto Argonauts, along with running back Andre Durie, Councilor Nunziata and others will officially welcome Jonathan, Terry and Run the Dream to Toronto! Come out and show your support!
Attached you will find the full listing of the events planned in the GTA!
Stay tuned for more events in Mississsauga and the Toronto Harbour Dinner Cruise with Damon Allen in support of Run the Dream! Limited tickets are already on sale!
For event information and ticket purchases for the boat cruise, please contact alex.bittner@runthedream.ca. Also, log on to www.runthedream.ca for more information and updates!
Take care and thank you for the continued support . . . . .Your GTA events listing is attached!
Lauren Canzius
General Manager, Media Relations & Communications
Run The Dream
lauren.canzius@runthedream.ca
------------------
Mississauga is Jonathan's home town. I don't have a flyer with full details for the events in this area, please check the website for times and locations of events in Mississauga.
www.runthedream.ca
------------------
From the Hamilton area:
Hey Everyone - The details of the Run The Dream Weekend are in! See flyer below.
1) We need TONS of people at Spencer Park, Saturday morning at 9:00 am sharp. Councillor Peter Thoem, Ward 2 City/Regional Councillor for the City of Burlington will be attending the event in the capacity of Deputy Mayor as well as other elected officials.
2) WE NEED SOME CELEBRITIES... anyone know any : ). If so, please invite them and email me at the office.
3) WE NEED RUNNERS... Your options are to run a lap around Spencer Park with Johnathan on his way towards RBG, run to RBG... or be at the RBG at 10:30 to run into Hamilton (5K run). And of course, nudge your neighborhood running enthusiast to run with us.
4) The BBQ at Ryerson United Church in Hamilton runs from 5:30-7:00, all are enthusiastically welcome.
5) Our chapter has 30 tickets for the JAZZ BRUNCH WITH LINCOLN ALEXANDER. So cool! Who's going? Tickets are $25 (and they'll be happy to take more donations as well). If you'd like tickets, email me at the office. The Brunch will go from 12 pm - 2 pm.
6) Here is a link to download a high resolution PDF for printing purposes for those copies that you want to post in stores, on notice boards, etc: http://www.emergingsolutions.ca/rtd/golden%20horseshoe%20events.pdf
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And in my location, I would love some help in putting something together for Jonathan:
NEWMARKET AND SOUTH SIMCOE COUNTY AREA FOR RUN THE DREAM:
Jonathan will be coming from Newmarket, through Bradford and Innisfil and end his day in Barrie on Saturday, August 2nd. I am in the preliminary stages of planning a meet and greet with Jonathan for local area families. If anyone can assist in this planning, please contact me, I am really stretching myself right now and could really use some help.
In the meantime, if you live or know other families affected by autism that live in this area, please mark on your calendars to be at the Lions Park on Barrie Street in Bradford on Saturday, August 2nd. Exact times will be confirmed later. The Park has a play area, lots of open field and a public swimming pool.
-------------------
From the Globe and Mail, a great story about Unity for Autism:
GIVING BACK
A son's autism opens a door for others
The Donor: Kathy Deschenes
PAUL WALDIE
July 19, 2008
The Donation: nearly $1-million and climbing
The Cause: Unity for Autism
The Reason: To help people with autism find services
Kathy Deschenes once became so exhausted caring for her son Lee, who has autism, that she called 911 and begged them to take him away. "I couldn't take it any more," Ms. Deschenes recalled from her home in Toronto.
That was 10 years ago and instead of giving up on her son, Ms. Deschenes vowed to do whatever she could to help turn his life around. She began working as a fundraiser for a non-profit group in Toronto that worked on autism causes and eventually decided to strike out on her own. Four years ago, she created Unity for Autism to help families with an autistic child find services. She had seen what various programs had done for Lee, now 15, who began speaking at age 8 and is now fully integrated into his community.
"He is a miracle child," she said. "Lee is living proof that given the support, we can change the prognosis of many of these children."
In its first year, Unity for Autism raised more than $200,000 and last year Ms. Deschenes pulled in $400,000. She is hoping to raise $1-million this year.
The volunteer-run charity contributes almost every penny raised to helping families gain access to services. Some of the projects funded in recent years have included helping children with autism attend camps, providing social skills training and offering specialized software, adaptive furniture, sensory equipment and subsidies to attend a specialized school.
"There is such a crisis that exists for services, and parents don't know where to turn to," said Ms. Deschenes. "Everyone has potential."
pwaldie@globeandmail.com
----------------
A listmate shared this from another list, I have not had an opportunity as yet to view it myself:
Please click on this link to reach the presentation by Dr Joan Jory in Guelph on 22 June 2008,
Micronutrients in Autism: http://www.ont- autism.uoguelph. ca/Micronutrient s-June08. pdf
The meeting was organized for Autism Ontario's Wellington Chapter.
---------------
A friend from our church shared this, again I have not had an opportunity to view myself as yet;
Hi Nancy,
Just a short note to let you know about the programme last night (Wed July 16th) on 100 Huntley St. Because it was after 9 PM. I didn't call you.
It has an interview with Moira and a man B.J. McKelvey on Autism. He is a singer and has recorded the song "I'm In Here" which was song as a video. It is very moving, and he is very frank in talking about his 4 1/2 year old son who is autistic.
You can see the programme on the Internet. I know that you and Phil will be encouraged by seeing it.
---------------
This was a rather "different" fundraising project taken on by Mothers in the UK... shared by a listmate.....
Naked UK Mums' Bums For Autism
For those of you who crave a dose of tabloid journalism. -ed.
tinyurl.com/4pl4zq
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And for those golf fans, this also from the Globe, Ernie Els uses every opportunity to bring awareness to autism, and he has now become a part of Autism Speaks and Athletes for Autism:
Mickelson back for essential British Open preparation
Associated Press
July 9, 2008 at 12:07 PM EDT
LUSS, Scotland — Phil Mickelson has returned for his annual British Open warmup at the Scottish Open at Loch Lomond.
Although the course is nothing like the one at Royal Birkdale, where the Open will be played next week, Mickelson said Wednesday that it's the perfect place to hone his game.
"Part of getting ready for next week is performing well this week, hitting shots sharply and crisply, being prepared for this week," said Mickelson, who spent three days at Royal Birkdale.
"I think it's a very fair, fun, difficult test of golf. I saw it in three different conditions — calm, very windy and in a medium breeze," the second-ranked American added. "The course is in immaculate shape."
Mickelson had his best chance in five tries of winning the Scottish Open last year until be bogeyed the final hole to fall into a tie with Gregory Havret, then bogeyed it again on the first playoff hole to hand victory to the Frenchman.
"I'm hoping to improve on that," Mickelson said.
Mickelson has won twice on the U.S. tour this year, the Northern Trust Open in California in February and the Colonial in Texas in May.
"It's been up and down. I had a lot of consistency from 10th to 25th but not the performances in contention as much as I would like," Mickelson said. "What I'm really concerned about is the next nine or 10-week stretch with the Open, our FedEx Cup, the PGA, Akron. That will really determine how the year went."
Mickelson's feels that the absence of Tiger Woods, who had knee surgery after winning the U.S. Open, will affect the rest of the year.
"It's going to have a huge effect on the FedEx Cup and the Ryder Cup, losing the No. 1 player in the world from our team," Mickelson said. "It will also have a negative effect on television ratings and fan interest. But it opens the way for players to come through and win tournaments they might not have won."
Chief among his rivals here is No. 3-ranked Adam Scott, the winner in Qatar and in the Byron Classic on the U.S. tour this year, and former winners Ernie Els, Colin Montgomerie and Lee Westwood.
Els broke a slump by winning the Honda Classic in Florida but then missed the halfway cut at the Masters, the BMW PGA at Wentworth and the Memorial.
"My defence for the last two is that I was just into swing changes with (new coach) Butch (Harmon) and it didn't happen for me," Els said. "After the Memorial I did some more work with Butch and the changes are coming around. The more I play the better I will play with the changes."
He had a good U.S. Open going last month until his putting went askew. He tied for 14th.
Els has had three weeks off at his England home, watching the Henley Regatta and Wimbledon with his family.
"My game has been a little bit dicey to say the least. It's got a bit of rust on it," he said. "But I've won here twice and I feel this is a good golf course for me. And I feel refreshed."
Els, too, felt the loss of Woods from upcoming majors.
"Whoever is going to win next week is going to have to answer questions like 'Do you think you would have won if Tiger were here?' But the game of golf will live on after Tiger Woods, although we will miss him."
Els said his family's welfare remains of primary importance, particularly since his son Ben was diagnosed with autism this year.
"He will never be able to play golf or tennis or rugby. But after a while, you cope," Els said. "I don't think it has taken my focus away from trying to reach my goals."
Montgomerie faded to 24th in the European Open last week in the defence of the title he won at The K Club a year earlier. Down to 80th in the world, he needs a good fortnight, especially after missing the halfway cut in the Scottish and British Opens last year.
Luke Donald has withdrawn with a wrist injury, and David Frost pulled out to rest after earning a spot at the British Open at the European Open on Sunday.
I had a volunteer step up to help me put together a Meet and Greet in Bradford for Run the Dream on the morning of Saturday, August 2nd at the Bradford Lions Park on Barrie Street (phew). We have a pavillion booked, and there will be public swimming available in the outdoor heated pool at 12:30 pm. More details to come, along with confirmation of time of Jonathan's arrival to our Meet and Greet. If you live in the Towns of Newmarket, Georgina, Bradford, Innisfil, Beeton, Tottenham or Alliston and the surrounding areas please set this day aside to join us to meet Jonathan and cheer him on his way across Canada.
-----------------------
Run the Dream in Downtown Toronto tomorrow (Tuesday, July 22nd)
Hi everyone,
Just in case people haven't heard yet, Jonathan Howard the young man running across Canada is in Toronto now. Tomorrow from 12-1 there is an event at City Hall (www.runthedream. ca).
My son Lucas is giving a welcoming speech for Jonathan. If you are working in the downtown core and can make it over on your lunch or know people who can come out to support this positive awareness initiative please let them know.
Luke worked very hard on his speech and he is over the moon about meeting Mr. Howard. He has been following his journey all the way from St. John's Newfoundland where it started.
Mr. Howard is generating a great deal of buzz and it is only growing. Please come out if you can and support a couple of wonderful young men both doing their part to keep the issues surrounding Autism in the forefront.
Best Regards,
Norrah Whitney
-------------------------------
Run the Dream in the Halton and Hamilton area:
Hi,
Jonathan Howard is running across Canada in support of Autism Awareness.
Para-Olympian Terry Robinson is with Jonathan on his Ontario Leg of the
journey.
Jonathan and Terry will be in Halton and Hamilton on July 25 to 27.
Their schedule is as follows:
July 26
9 am - Spencer Smith Park (Lakeshore and Brant Street - Compass
Circle) - Join Deputy Mayor Peter Thoem and MPP Joyce Savoline and
others to launch the
day. You are welcome to join Jonathan and Terry on their
run to the Royal Botanical Gardens (RBG).
10:45 am - RBG (Burlington) 5 k community run with local celebrities
to Pier 4 Park (Hamilton) - no fee, donations requested.
11:30 am - Hamilton Pier 4 Park - Join Jonathan, Terry and community
runners - including official welcomes, entertainment and park activities.
5:30 pm - Ryerson United Church, Ancaster - BBQ Dinner - tickets
$5.00 - optional donation
July 27
12 pm (noon) - Jazz Brunch with The Honourable Lincoln Alexander -
69 Auchmar Road - Hamilton - tickets $ 5.00 - optional donation
These events are being hosted by Autism Ontario Hamilton, Autism Ontario
Halton and Ryerson United Church
For more information and tickets, click the following link:
http://www.asohalto n.org/Run% 20the%20Dream% 20Halton. pdf
or
http://www.runthedr eam.ca
Chuck Learn
---------------------
The story put out by the Board of Directors from the Northern Service Provider has hit media nationally:
Sunday, July 20, 2008
Canadian Press Newswire
Province not providing enough funds for child autism services, agencies say
TORONTO _ The Liberal government is failing to live up to its promises to adequately fund early therapy for autistic children, forcing some service providers to turn away families who've waited years for an expensive but crucial treatment, agencies say.
Child Care Resources, a non-profit agency in northern Ontario, will be facing a $2.5-million deficit by the end of the year if the province doesn't deliver promised funds that would cover the cost of providing intensive behavioural intervention (IBI) therapy, said Maxine King, chairwoman of the agency's board of directors.
''Our backs are against the wall at this point, as far as getting further and further into debt,'' King said in an interview from Sudbury.
''We knew that if this didn't get resolved, that we have a very small window of opportunity to make an immediate change.''
For over a year, the Ministry of Children and Youth Services has instructed the agency to provide services to more children with the promise that additional money would follow to cover the extra costs, King said.
But officials now say the ministry doesn't have the funds to meet that shortfall, leaving Child Care Resources in the lurch with a $122,000 deficit, she said.
Children who are currently receiving help won't be cut off, but to avoid widening its deficit, the agency has no choice but to stop accepting more children who need the therapy, King said.
Some families may now have to wait up to two years for IBI therapy, rather than six months, she added.
''That's the saddest thing,'' King said.
''This, for many of them, was the light at the end of the tunnel _ knowing that their child was on a waiting list and that they would be able to, hopefully in the near future, be receiving this therapy.''
Other agencies also say they can no longer afford to provide the therapy to more children.
Markham-based Thames Valley Children's Centre, which operates in southwest Ontario, found a way to balance its books but only has enough funds to maintain its current level of service, said CEO Dr. John LaPorta.
The agency currently delivers IBI therapy to 87 autistic children, but won't be able meet its target of 101 kids this year as set by the province, he said.
Algonquin Child and Family Services, which helps to autistic children in northeast Ontario, is facing a $900,000 deficit, although it's working with the province to deal with the shortfall, said executive director Jeffrey Hawkins.
Children and Youth Services Minister Deb Matthews said provincial funding for autism services has kept pace with the number of children receiving IBI therapy, which reached 1,400 this year. The funding has more than tripled to $150 million this year from $44 million in 2003, when the Liberals was elected, she said.
But Matthews said she's also ''very concerned'' about the deficit at Child Care Resources, and has appointed a team to investigate why the agency is facing financial troubles.
''I've got very good people going in, because we have to get to the bottom of it. We have to understand it,'' she said.
''But until we get the information we need, I don't think it's fair to families to start talking about service cuts.''
Surrey Place Centre in Toronto, which provides services to 330 autistic children, is not facing a deficit, said Elizabeth Scott, the agency's vice-president of autism services. It's found ways to cut costs, such as creating classrooms where children can receive IBI therapy.
Critics warn the backlog will lengthen an already growing list of 1,100 autistic children who are still waiting to receive the therapy.
''It's obvious that the Liberal government is breaking its promises on autism,'' said NDP critic Andrea Horwath.
''It looks like the people holding the bag are these agencies _ these not-for-profit agencies _ that are going to be stuck having to decide and having to be the bearers of bad news that the government hasn't lived up to its promise.''
Stacey Sayer, a 38-year-old nurse in northern Ontario, said she's waited two years for her 9-year-old autistic daughter Maggie to receive IBI therapy and there's still no end in sight.
The closest place where Maggie can receive autism services is in Timmins, an hour-and-a-half drive from their home in King Kirkland, a small community east of Kirkland Lake. The family also makes frequent trips to North Bay, Toronto and Ottawa to meet medical appointments for Maggie, who also suffers from Down Syndrome among other disabilities and needs constant care.
There are IBI therapists in Kirkland Lake, but Maggie can't receive the therapy until she makes it to the top of the wait list, said Sayer. And Maggie can't move up the list until the therapy is provided to another autistic child in Kapuskasing, which doesn't have workers to provide the therapy, she said.
''We're very worried, yes, that time is ticking away and we're not getting what we need, and she's not getting what she needs,'' Sayer said.
''We're worried about her whole future and what's going to happen to her in the end.''
___________________________________
Monday, July 21, 2008
THE KINGSTON WHIG-STANDARD
NEWS, Page: 7
Autism funds not coming: agencies
Groups say Ontario failing to meet promises, forcing services to be cut
MARIA BABBAGE, THE CANADIAN PRESS
The liberal government is failing to live up to its promises to adequately fund early therapy for autistic children, forcing some service providers to turn away families who've waited years for an expensive but crucial treatment, agencies say.
Child Care Resources, a non-profit agency in northern Ontario, will be facing a $2.5-million deficit by the end of the year if the province doesn't deliver promised funds that would cover the cost of providing intensive behavioural intervention (IBI) therapy, said Maxine King, chairwoman of the agency's board of directors.
"Our backs are against the wall at this point, as far as getting further and further into debt," King said in an interview from Sudbury.
"We knew that if this didn't get resolved, that we have a very small window of opportunity to make an immediate change."
For over a year, the Ministry of Children and Youth Services has instructed the agency to provide services to more children with the promise that additional money would follow to cover the extra costs, King said.
But officials now say the ministry doesn't have the funds to meet that shortfall, leaving Child Care Resources with a $122,000 deficit, she said.
Children who are currently receiving help won't be cut off, but to avoid widening its deficit, the agency has no choice but to stop accepting more children who need the therapy, King said.
Some families may now have to wait
up to two years for IBI therapy, rather than six months, she added.
"That's the saddest thing," King said.
"This, for many of them, was the light at the end of the tunnel - knowing that their child was on a waiting list and that they would be able to, hopefully in the near future, be receiving this therapy."
Other agencies also say they can no longer afford to provide the therapy to more children.
Markham-based Thames Valley Children's Centre, which operates in southwest Ontario, found a way to balance its books but only has enough funds to maintain its current level of service, said CEO Dr. John LaPorta.
The agency currently delivers IBI therapy to 87 autistic children, but won't be able meet its target of 101 kids this year as set by the province, he said.
Algonquin Child and Family Services, which helps to autistic children in northeastern Ontario, is facing a $900,000 deficit, although it's working with the province to deal with the shortfall, said executive director Jeffrey Hawkins.
Children and Youth Services Minister Deb Matthews said provincial funding for autism services has kept pace with the number of children receiving IBI therapy, which reached 1,400 this year. The funding has more than tripled to $150 million this year from $44 million in 2003, when the Liberals were elected, she said.
But Matthews said she's also "very concerned" about the deficit at Child Care Resources, and has appointed a team to investigate why the agency is facing financial troubles.
"I've got very good people going in, because we have to get to the bottom of it. We have to understand it," she said.
"But until we get the information we need, I don't think it's fair to families to start talking about service cuts."
Surrey Place Centre in Toronto, which provides services to 330 autistic children, is not facing a deficit, said Elizabeth Scott, the agency's vice-president of autism services. It's found ways to cut costs, such as creating classrooms where children can receive IBI therapy.
Critics warn the backlog will lengthen an already growing list of 1,100 autistic children who are still waiting to receive the therapy.
"It's obvious that the Liberal government is breaking its promises on autism," said NDP critic Andrea Horwath.
"It looks like the people holding the bag are these agencies - these not-for-profit agencies - that are going to be stuck having to decide and having to be the bearers of bad news that the government hasn't lived up to its promise."
Stacey Sayer, a 38-year-old nurse in northern Ontario, said she's waited two years for her 9-year-old autistic daughter Maggie to receive IBI therapy and there's still no end in sight.
The closest place where Maggie can receive autism services is in Timmins, an hour-and-a-half drive from their home in King Kirkland, a small community east of Kirkland Lake.
The family also makes frequent trips to North Bay, Toronto and Ottawa to meet medical appointments for Maggie, who also suffers from Down Syndrome among other disabilities and needs constant care.
There are IBI therapists in Kirkland Lake, but Maggie can't receive the therapy until she makes it to the top of the wait list, said Sayer. And Maggie can't move up the list
until the therapy is provided to another autistic child in Kapuskasing, which doesn't have workers to provide the therapy, she said.
"We're very worried, yes, that time is ticking away and we're not getting what we need, and she's not getting what she needs," Sayer said.
"We're worried about her whole future and what's going to happen to her in the end."
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And a very important message originated from the US - regarding comments made by TV host Michael Savage. This message is posted from another list, and many listies sent in info on this topic to share out.... it's important that we ensue Michael Savage is educated about our children and the diagnosis before he does any more damage:
Radio's Michael Savage Calls Children With Autism "Brats" and Autism a "Scam"
From an Autism Action Network announcement.
Use the Autism Action Network to Tell Savage's Broadcasters and Sponsors What You Think of Savage and His Offensive Remarks
"OFFENSIVE!"
That's What We Call The Words of Trash Radio Host Michael Savage
Take Action Against Michael Savage's Remarks!
"Idiot" "brat" "moron"
These are just a few terms Savage used to describe children with Autism on his radio program. He went on to say autism, a lifelong debilitating disorder that leaves many children without the ability to speak and in constant pain, was a "fraud" and a "racket" perpetrated by inept parents.
Do not permit Savage's offensive statements to go unchallenged. Savage and his broadcasting syndicators must be held accountable for his hateful and ignorant tirade. Contact his sponsors and demand that they withdraw their support. Most reasonable people, and most for-profit corporations, do not want to be identified as oppressors of the disabled. Your words will have great impact and will make the choice clear for them.
To Hear Savage's offensive comments for yourself with some helpful commentary that puts him in his place, click on these links: tinyurl.com/6cxu4m and tinyurl.com/62atbo
Send a message to Savage's broadcasters, syndicators and commercial sponsors:
(Use our messaging system to contact them but also fax and call them directly – where a web address email is indicated go to their web site):
Buckley Broadcasting/WOR Radio General Phone Number: 212 642 4500 111 Broadway 3rd Floor, New York, NY 10006
Home Depot public_relations@homedepot.com (770) 384-4646
Sears Sears Public Relations And Communications (847) 286-8371 contact through their website: www.searsmedia.com/tools/inquires/feedback.htm
Radioshack Media Relations_ Riverfront Campus _Mail Stop #CF7-130_300 RadioShack Circle _Fort Worth, TX 76102-1964_ Phone: (817) 415-3300_ Fax: (817) 415-2585_ E-mail: media.relations@RadioShack.com
AFLAC 1-800-99-AFLAC (1-800-992-3522) Laura Kane, 2nd Vice President External Relations Aflac Incorporated_1-706-596-3493 Mechell Clark_ Media Relations Manager_ 1-706-243-8004 news@aflac.com
Budweiser Anheuser-Busch, Inc.
One Busch Place St. Louis, MO 63118 Email through their site: contactus.anheuser-busch.com/contactus/email.asp 1 800 DIAL BUD (1 800 342 5283)
Michael Savage michaelsavage@paulreveresociety.com
Talk Radio Network Talk Radio Network Talk Radio Network P.O. Box 3755 Central Point, Oregon 97502 Phone: 541-664-8827 Fax: 541-664-6250
The Savage Nation The Savage Nation The Paul Revere Society 150 Shoreline Hwy, Bldg E Mill Valley, CA 94941 Fax: 415-339-9383
Here is a sample message you can use:
Dear Michael Savage Sponsor or Supporter: We have learned that your company sponsors or supports Michael Savage's radio program.
On a recent program, he attacked children with autism, claiming that autism was a fraud and a scam. He went on to say: "I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is."
Savage also used offensive terms to describe autistic children, such as "idiots", "morons" and more.
We parents and family members of an individual with autism will not tolerate Savage's offensive and unacceptable conduct. We respectfully request that your company withdraws their advertising dollars from his programs and, if you broadcast or syndicate his radio show, that you dismiss him immediately.
Autism affects 1 in 150 children in the USA. Each of those children has a circle of family, friends and supporters who share the concerns of the child. We would say that there are likely 10 people for every child with autism who shares that child's concerns.
When you consider this request, please consider that as many as 1 in 15 Americans will be watching your decision and how you react will have a powerful impact on their opinion of your company.
We hope and trust that you will do the right thing.
Respectfully,
--------------------------
Working with Individuals with Autism Spectrum Disorder
Recognition of Achievement
Workshop Series: August 11, 12, 13, 14 & 18, 2008
Working with Individuals with Autism Spectrum Disorder (ASD) is a series of
five six hour workshops plus one hour independent study for each workshop
designed to provide early childhood educators, teachers and educational
assistants with specific strategies and techniques to use in the classroom
with individuals with Autism Spectrum Disorder. The workshops will
include: an overview of the five disorders, teaching strategies, team
building, support systems, communication strategies with families, ethics
and professionalism, managing problematic behaviours in the classroom, the
teaching environment and a strategic plan of action.
To register call 416-493-4144 or visit
_____
https://mail. hcdsb.org/ owa/8.1.240. 5/themes/ base/clear. gif
Workshop # 1 - Mon., Aug. 11 - $75 ASD090: Autism Spectrum Disorder
* Brief overview of the 5 disorders
* Theories of causes, symptoms, characteristics & skills
* Assessment & evaluation strategies
* Support systems
Workshop # 2 - Tues., Aug. 12 - $75 ASD091: Teaching Strategies
&Techniques for Individuals with ASD
* Social skills, peer interactions
* Teaching language
* Visual support strategies
Workshop # 3 - Wed., Aug. 13 - $75 ASD092: Managing
Difficult/Inappropr iate Behaviours in the Classroom
* Intervention strategies
* Adaptations
* Variety of procedures and techniques to manage problematic
behaviours
Workshop # 4 - Thur., Aug. 14 - $75 ASD093: Communication Strategies with
Families, Staff & Clinical Teams
* Interpersonal skills & problem solving techniques
* Responding effectively to different family dynamics, culture,
ethnicity, religion, & socio-economic status
* Ethics and professionalism
* Relevant federal & provincial legislation
Workshop # 5 - Mon., Aug. 18 - $75 ASD094: Physical Environment: The
Teaching Environment
* Strategic plans to meet the needs of individuals with ASD
* Supporting inclusion & learning success
* Arranging the environment: accommodation & modification
* On-going assessment & evaluation
* Developing an IEP for individuals with ASD
All workshops are held 9am-4pm* at the Markham Campus - 10 Allstate Pkwy.
*Plus one hour of independent study.
Space is limited.
To register call 416-493-4144 or visit senecac.on.ca/ parttime
------------------------
A very interesting article in the Vancouver Sun today:
Monday » July 21 » 2008
Researchers pulling back the veil on adult autism
Sharon Kirkey
Canwest News Service
Sunday, July 20, 2008
Was the young doctor autistic?
He didn't think so: "I don't walk on tippytoes or get hypnotized by Wheel of Fortune," he explained.
But he did get upset when people didn't say what they mean. He loved math. "And then there's this odd thing I do with my hands and my nose when I'm excited and I think nobody's looking," he once wrote in the Canadian Medical Association Journal.
He thinks he may be on "some distant end" of the autism spectrum. At the other end are people like the man who organized his wife's CDs by the composer's date of birth and fell asleep on the floor during social events; his wife thought he was eccentric.
Or the office clerk who beat up a woman on his way to the bus stop one morning for the simple reason she was in his way. He was obsessed with not walking on the cracks between the tiles on the sidewalk.
Autism in children has never been more in the news. But few are talking about the adults, experts say, and few therapists are available to treat the illnesses in adults just as more are seeking help.
The official criteria for diagnosing autism spectrum disorders apply to children. Some adults only recognize autism in themselves when their child is diagnosed.
On the high-functioning end of autism is Asperger's disorder, "and that's the group that's coming to people's attention," says Dr. Deborah Elliott, assistant professor of psychiatry in the division of developmental disabilities at Queen's University in Kingston, Ont.
Even Asperger's is listed under the category "usually first diagnosed in infancy, childhood or adolescence" in psychiatry's official guidebook, the Diagnostic and Statistical Manual of Mental Disorders, and it was only in 1994 that the syndrome was added.
Adults with Asperger's have normal or above normal intelligence, but their social skills are disastrous. They avoid eye contact, have difficulty forming relationships and can't pick up on normal social cues, signs and facial expressions.
They may be able to get an advanced degree, but once employed they can't interact with their co-workers in a normal way. There's no normal coffee chit-chat, Elliott explains. They sometimes ask embarrassing questions and easily lose their tempers.
"A disagreement with a co-worker or a boss, or someone looked at them wrong, or it was a cloudy day instead of sunny like the weather man said, or you gave them the wrong sandwich," says Karen Rodman, founder and director of Families of Adults Affected by Asperger's syndrome, Inc., or FAAAS. "There's no rhyme or reason. And the problem is with everyone else around them. It's never their fault."
Some are diagnosed with social anxiety disorder, bipolar or depression. "You treat the depression but then you're left with somebody who still is a bit odd and eccentric," Elliott says. "That may be the first time they actually come to somebody's attention. Yes, he's depressed, but the reason he's depressed is because he can't develop relationships. Even though we've treated his depression, he's still stuck with disability."
Far more men than women are affected. Asperger's and high-functioning autism has been described as the extreme of male thinking, says Dr. Rutger Jan van der Gaag, a professor of clinical psychiatry at Radboud University Nijmegen in The Netherlands. "Very much detail, very little empathy."
Famous people from Isaac Newton to Einstein exhibit Asperger-like traits. "When you think of the rigidity and scrutiny you need to accomplish some of the big scientific achievements and inventions, if you're distracted by the beauty of life outside the lab, you're never going to have the perseverance to do so," van der Gaag says.
Many adults with autism recognize something is wrong, Elliott says. "They know they're not 'getting it.' They're not getting cues from people, they know they're being marginalized, they're aware they're different." But they often don't come to the attention of mental health experts until they're reprimanded at work for making an inappropriate comment, or charged with harassing or stalking.
"You can help them understand that they have a syndrome that makes them different," Elliott says. "That somehow relieves them from feeling that they're doing something terribly wrong."
skirkey@canwest.com
© Canwest News Service 2008
----------------------------
With all the excitement of Jonathan Howard being in the GTA and southern Ontario area over these next two weeks, attention has spread thin to recognize the efforts of another gentleman also planning a very courageous event to raise awareness about autism:
Good Afternoon,
We had the good fortune to host the Run the Dream here in Kingston. Running
along side Jonathan and Terry was Jay Serdula. Jay is scheduled to start
his Marathon Swim on July 28th, 2008 from Niagara on the Lake. It is my
understanding that Jay's team still needs volunteers. I have include the link to
his website below.
Jonathan and Terry were both very supportive of Jay when they were here in
Kingston!!! Truly these are 3 very amazing men. I am hopeful that in all of
our excitement with Jonathan and Terry and the Run the Dream, that we will
not forget Jay Serdula!!!! If you live in the Niagara on the Lake area, please
come out and support Jay on July 28th.
We Kingstonians are very proud of Jay!!!!
_About Jay Serdula « Swimming Blue_
(http://swim4asperge rs.wordpress. com/about/)
Cheers,
Pat La Londe
-------------------------------
And on a lighter note, this from a US tabloid :
Britney Spears Appears In Public To Support Autistic Kids
July 21, 2008
With her custody battle finally over, Britney Spears made her first appearance at a social event in a long time, surprising everybody when she showed up at Jenny McCarthy and Jim Carrey's fundraiser for Generation Rescue.
The organization is dedicated to researching autism, attempting to “share the truth with families about the potential cause of their child’s Neurological Disorders so they can focus on effective treatments.”
A person attending the party told People magazine that Britney “looked great and seemed really happy.”
Although she stayed close to her assistant Brett and remained silent most of the time, she “smiled and clapped during the video about autism,” the witness said.
Last week, Britney Spears reached a custody agreement with ex-husband Kevin Federline. While he got sole custody of the children, Britney gets three visits a week, including two overnights, from her two sons, Sean Preston, 2 and a half years old, and Jayden James, aged 1 year and a half. Also, the settlement says Britney has to pay Federline $20,000 a month in child support, an increase from $15,000.
Other celebrities who attended the fundraising event were Hugh Hefner and the three Girls Next Door (Kelly Madison, Kendra Wilkinson and Bridget Marquardt), as well as newlyweds Charlie Sheen and Brooke Mueller, and Robert Rodriguez with Rose McGowan, who kissed and danced a lot, People informs.
Global Health Trax President & CEO Tom Dixson told the media that he greatly praised and admired the initiative of Jenny McCarthy, and the autism community.
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