Tuesday, September 23, 2008

Autism Articles August 9th to 25th 2008

Autism News Articles
August 9th – August 25th 2008

Alliance for families with autism
Visit
www.autismnewsarticles.blogspot.com
to read archived mail

AFA is experiencing VACATION TIME and for Trish – temporary medical leave for the mailout-
You may get duplicated articles in this mailout.
Please be patient with our mail

Thank you
AFA

RUN THE DREAM CONTINUES………..


The Run the Dream event in Sudbury went off without a hitch that Autism Coffee Chat, a parent-driven support group organized.

Trish Kitching hosted the party of 6 that evening in her home serving up Jonathan’s favourite “steak and pasta—Terry even got the chance to dip into the hot-tub with his buddy Morgan!

A great time was had by all. The largest turnout so far of dignitaries were present.
Read the full article here from the Sudbury Star.


http://www.thesudburystar.com/ArticleDisplay.aspx?e=1156677


Give autistic kids a chance'
Event marks arrival of cross-country trek to battle disorder
Posted By ANGELA SCAPPPATURA, THE SUDBURY STAR
Updated 5 days ago
Standing behind a wooden podium outside Tom Davies Square, 10-year-old Matteo Raso strained to pull the stationary microphone down to his mouth so he could address the crowd gathered for an event on autism.
His mother and younger sister sit attentively listening to the articulate boy's story about how it feels to struggle with autism.
Raso was diagnosed with autism at the age of six. He wasn't able to speak until he was four.
The diagnosis does not bother Raso, who, in a self-assured voice, said he is proud of who he is.
Despite being bullied in school for his "constant questions," Raso sees himself as a miniature Einstein because of his curiosity and love of science.
"Maybe I could be the next Einstein," he said. "Give autistic kids a chance."
Raso spoke to the crowd as part of an event signifying the arrival of members from Run for the Dream, a cross- Canada trek meant to raise awareness and funds for autism.
Mississauga athlete Jonathan Howard marked the halfway point of his run for the disorder and aims to raise $2.5 million by the end of his journey.
"I chose autism because it is on the rise," he told the crowd. "A few years ago, the rates were one in 1,000 children would have autism, now it is one in 165."
Howard was joined by friend Terry Robinson, a two-time Paraolympian who suffers from cerebral palsy. Robinson is participating in the Ottawa-to-Winnipeg leg of the run.
Discussion at the event turned to the struggle of social agency Child Care Resources.
The organization is in a dispute with the Ministry of Children and Youth Services over funds the agency says it was promised by the province.
Maxine King, chair of the Child Care Resources board, said the ministry told them to make more spaces available for clients needing intensive behavioural intervention (IBI) therapy.
The treatment is designed to provide individualized care and education for children with varying levels of autism.
King said they began providing the treatment to more children after the ministry promised additional funding but were recently informed the money was no longer coming.
"They would periodically flow money through and when it got to the end of the year we found that we were short $122,000," she said. "They guaranteed they would cover the increased costs ... they have an outstanding bill that has not been paid."
King said they had a 58 per cent increase in services to children in 2007-08, but only received a 31 per cent increase in funding.
"Clearly, those don't line up," she said.
The ministry has now said they do not have the cash to cover the cost and Child Care Resources has been forced to close enrollment. This means the already lengthy wait times will be extended.
MPP France Gelinas was at the event and said while the average wait time is 17 months, she has heard of families who have waited three to seven years for IBI.
Child Care Resources is now facing a $2.5-million deficit and board members are concerned they may be financially responsible for the shortfall.
An investigation by the ministry examining the funding discrepancy has been completed and King said the results support their assertion that the province is responsible.
The board will be speaking with the Minister of Children and Youth Services, Deb Matthews, on Thursday and King hopes it will be a step toward resolving the issue.
"There is now a trust issue," she said. "We are definitely going to change the way we work in the future. We won't make anymore changes until we see the money first."
Article ID# 1156677


Comments from the star
As a parent of a child with Autism, I see these kids being let down. My daughter has been in IBI for 4 yrs. We were lucky she was diagnosed very very young. She is now being discharged from the program this fall. They say because she isn't progressing (which i don't believe.i think it has everything to do with our gov't not holding up their end of the bargain) I have seen the changes these programs can make to these kids. TO go from total silence and not want any interaction with anyone, to loving children who can make their needs now. Give them a fighting chance. Either pay now and save in the long run because they were given the chance to leave a somewhat "normal" life, or keep tossing then aside and pay TRIPLE when they hit adulthood and they ahve to pay for them for the rest of their lives


Another comment
Where do you think our money is spent? I had a relative (who was put into my mother's care) in the CAS system that wanted a horse. CAS provides a monetary funds directly to a child in their care. These funds ($900+ a month) are used by the child to purchase items they may need or want. In total, the foster parent receives approximately $2000+ a month for the cost of caring for a foster child ($1100 for the caregiver and $900 for the child) all tax free. I understand the need to compensate the foster parents and the tax free incentive they receive but I do not understand that while a foster child is receiving these monies, the foster parent or child may ask for addition funds so that they may travel or lease a horse.
My relative lived in a very small southern Ontario town with little to no opportunities. She wanted a horse and asked CAS for one. CAS agreed to lease and to pay for riding lessons at a cost of $500 a month. Now one would think that a child at the age of sixteen would like to learn to drive but not this child. So, my mother drives the child to and from the stables. The cost of driving this daily route is expensed to CAS. On a few occasions while I am visiting I too make this trip to the stables. When I get there, there each time there is no one around to provide these alleged riding lessons CAS is paying for. I ask "where's the instructor?" My mother replies there is no instruction just the horse.
In 2002 I married and the wedding was in Las Vegas. My mother of course was invited to the wedding. Now you should know, CAS provides a service where foster parents may ask that a child in there care be placed into another home temporarily. My mother makes this request of CAS but CAS has a better Idea, let's send her along as well. So CAS pays for the flight, hotel and meal expenses for a one week vacation for the child for a week. While I have no problem with relative attending, I do have one with my tax dollars being used for such a trip.
Now lets look at CAS in comparison with the Ministry of Children and Youth Services and the services to our children. A parent child on welfare with a bad tooth goes to the dentist and dentist provides to options; fix the tooth or pull the tooth. The parent goes to the welfare office and explains the problem. The Welfare Clerk will likely say "pull the tooth" (I've been on welfare AND in this situation so I know what I'm talking about.) But a child in the CAS system with the same problem will have that tooth repaired. Why does this Ministry permit this double standard? And why does CAS children get preferential treatment.
It would appear that family of four on welfare with two children must make ends meet on approximately $1500 for the essentials of life while a child in the CAS system can enjoy the pleasure of riding a horse at the taxpayers expense for only $500.00 a month. CAS would argue that due to the mental anguish the child has suffered through the loss of their families involvement in their life should be compensated, and so they falsely believe that money will buy these children happiness and thus become productive members of society. So while the welfare parents are at the food bank trying to make ends meet, they should be happy to know that somewhere a child is riding a horse that their tax dollars are paying for. The monies would have been much better spent on driving leasons so the child could find work out of the area and the cost of leasing the vehical in all likely hood less then $500 a month. At least then the child could have found a summer job, learned some valueable life lessons and possibly learn the value of paying for something you truly want rather then being spoiled by idiotic government policies.
I have a 3 year old son with autism and I am on a waiting list. The Ontario Government, Ministry of Children and Youth Services, Ministry of Health and the Ministry of Finance need to rethink the way we spend our tax dollars. CAS has too much power and while these children may have suffered through no fault of their own, but so have the rest of the children of Ontario, especially those that suffer from the inequities of the government system and their funding mechanisms.

From a listmate
Monday, August 25, 2008
THE CHRONICLE-HERALD


N.S. autism group welcomes coverage call from NDP
Paul Pickrem
A Nova Scotia autism advocacy and support group is cautiously optimistic about the provincial NDP's call for coverage of autism spectrum disorder under the Canada Health Act.
But Vicki Harvey, executive director of the Autism Society of Nova Scotia, said she is still concerned that the range of lifelong services required by autistic individuals and by their caregivers might not be funded since the act only covers medical needs.
"If this was a way for providing funding for all the necessary services, I would support it," she said in an interview.
"I recognize the need for the development of a national policy. This might be a starting point."
Ms. Harvey said she worries that funding for respite care, necessary for the families of people with the disorder, and funding for speech and language therapy might not be considered eligible under the federal act.
NDP Leader Darrell Dexter said in an interview Friday that including autism services in the act would ensure people get all the funding they need because it would be up to the province to ensure a broad range of services would be available.
In July, Mr. Dexter said that two Nova Scotia physicians moved to Manitoba because there were better services available there for their autistic child.
Nancy’s mailer

Run the Dream:

Enjoy a YouTube version of Luke Burrows speach he made a Nathan Phillips Square, also for his grandmother in attendance in Kitchener, and at the Bradford event.

www.runthedream.ca


Jonathan and Terry were in Sault Ste Marie on Saturday (yesterday) morning for a large Family Fun Event, and will continue on their way to the Manitoba Boarder along Hwy 17. The next event planned thus far is Sept 11th in Thunder Bay, Keep an eye for our Jonathan and Terry as he makes his way!!!!



----------------------------

This was sent out from MPP Andrea Horwarth's office Friday:




Opinion-Editorial (755 words)
LACK OF AUTISM FUNDING IS A PROVINCIAL SHAME
by Andrea Horwath, MPP

The idea of denying children the therapy that helps improve their lives and diagnosed conditions is unthinkable. But that’s what is happening in Dalton McGuinty’s Ontario with regards to children with autism. The lack of funding for autism services is a provincial shame.

Autism Spectrum Disorder (ASD) is one of the most common developmental disabilities, usually appearing during the first three years of life. It is a serious neurological disorder affecting children and their brain development in the areas of social interaction and communication skills, often resulting in severe and pervasive impairment. The prevalence rates in recent years have been increasing, now with 1 in every 150 children diagnosed with ASD in Ontario alone. The good news is that early diagnosis and intervention programs have dramatically positive outcomes for children immediately and into adulthood.

After hearing from the Liberals in the 2003 election that children with autism would receive treatment regardless of their age, families today across our province are learning the hard way that this government’s talk is cheap.


Most families can’t afford the amount of treatment their children need. Some have mortgaged their homes. Others hold community fund-raisers. The government’s pledge to fund autism treatment was supposed to end all this.

Now here’s the reality: Regional centres all over the province are in deficit and have been forced to tell waiting families they can’t provide further service. When vacancies become available, regional centres don’t have the financial resources to fill the empty spaces with children from the long waiting list.

Imagine a parent like Paula Barrett, who played by the government’s rules, waited 25 months for her son to reach the top of the treatment list. Days before the boy was to begin publicly funded IBI treatment the family received a letter from the regional service provider containing the bad news. The centre was out of money, and the youngster was out of luck. Finally he was at the top of the list only to be let down.

Lack of funding and a deficit-ridden program deprived this youngster and hundred of others of the opportunity to come out of the shell autism puts them in.

Families dealing with autism need to be able to plan for their child’s education and future. That becomes impossible with the on-again, off-again nature of the McGuinty government’s approach. … /2

Room 112, Main Legislative Building, Queen’s Park, Toronto, ON M7A 1A5 T – (416) 325-2777 F – (416) 325-2770 E – ahorwath-qp@ndp.on.ca



2
The not-for-profit Child Care Resources, which serves already under-serviced Northern Ontario communities, estimates its funding shortfall would result in reduction of up to 50 per cent and a severely limited capacity in their Autism Intervention Program. Parents are being warned to expect a two-year wait to begin their child’s treatment.

The McGuinty Liberals have closed the door on essential supports for children with autism and their families in Northern Ontario and Southern Ontario. With much fanfare they announced a summer camp for children with autism. But when summer rolled around, they cut off families from the fund that was supposed to provide a camp inclusion worker for children with autism. Moms and dads were blindsided by a new catch – if they didn’t put their child in camp in July they lost out because there was no funding for inclusion workers for August campers.

Families have actually left Ontario altogether for Alberta where programs are fully funded. That western province and its comprehensive funding for autism attracted a world autism expert from Ontario. More could follow.

We have a choice to create the kind of Ontario we want. In my Ontario, autism treatment would be fully funded and the children’s needs addressed. I believe there should be an immediate increase to the funding of autism services so that Regional Centres can respond to the needs of these children.

To hold back on funding while children and families continue to suffer and struggle is inexcusable foot-dragging.

Each day that children with autism languish on waiting lists and are denied access to services is another day that their potential for progress and success is thwarted by the McGuinty government’s inaction.

- 30 –

Andrea Horwath is the MPP for Hamilton Centre and Ontario’s NDP Autism Critic.
Media Inquiries: Sheila White 416-325-2777



------------------------------------

Oh, don't you just love it when "progress is being made". Not for our kids on the waiting list it's not!!!!!!!!!!!!!!!

This from the Toronto star:



End the wait on autism


August 24, 2008
Stacy Hayward thought her 4-year-old son's long wait for autism therapy was finally over. More than 18 months after being diagnosed with the neurological disorder, Branden reached the top of the waiting list earlier this summer and was slated to start intensive behavioural intervention (IBI) in September.
Late last month, the Welland family got bad news. Their local treatment centre told them the Hamilton-Niagara autism intervention program – one of nine regional programs funded by the Ontario government – was facing a budget crunch and new admissions were being delayed. That meant Branden would have to keep waiting.
Despite the prohibitive costs, which can run into tens of thousands of dollars a year, Hayward has hired a private IBI therapist to work with her son.
The Ministry of Children and Youth Services, which funds the regional autism programs, says the number of children receiving IBI has roughly tripled from 531 to about 1,400 since the Liberals took office in 2003. So has annual funding, which has jumped from $44 million to $151 million over the same period. But some of the regional providers say the money hasn't kept up with the demands on their programs.
Dr. Peter Steer, president of McMaster Children's Hospital, credits the province for putting an "enormous amount of money" into autism services. But he also says the Hamilton-Niagara program, which the hospital oversees, started seeing a "mismatch" last year between government funding and its "activity targets." Without a fresh infusion of funding, the program faces a projected deficit of $1.8 million this year if it continues to offer the same level of services to the same number of children.
At least one other regional service provider has also run into similar trouble. Child Care Resources, the Sudbury-based lead agency for the northern region, said last month it had "no choice but to plan for a dramatic reduction in service" to avoid a projected deficit of close to $2.5 million.
Both programs have said that children who are already receiving IBI will continue to get it. But if the funding gaps are not resolved, children on the waiting list could face longer waits.
Children and Youth Services Minister Deb Matthews believes government funding has kept pace with the expanded number of IBI spots, according to a spokesperson. The ministry says it has been working with regional service providers to address their budget problems, and progress is being made.
But with 1,100 children facing long delays for help, Matthews needs to end the waiting game before the lists get any longer.




---------------------------------

From the Saturday Welland Tribune:


What a difference a week makes
FAMILY OF AUTISTIC CHILD CAN SEE DIFFERENCE AFTER A WEEK OF IBI
Posted 1 day ago
If a difference can be seen in a week, imagine what a year could do.
Four-year-old Branden Hayward has been receiving intensive behavioural intervention therapy for one week, and already his mother, Stacy Hayward, has seen an improvement.
Branden, who was diagnosed with autism spectrum disorder shortly before the age of three, has quickly built a rapport with Melanie Smith, known to Branden as Miss Melanie, his private IBI therapist.
After hearing the news the Hamilton-Niagara Regional Autism Intervention Program would be delaying new entries due to a $1.8 million deficit, Hayward turned to privately-funded treatments for her autistic son.
Branden had previously been on a treatment list for the past two years before news broke the program would be halting new entries for an undetermined amount of time.
The treatments can cost families who receive no funding upwards of $60,000 a year.
Hayward says she's thankful that private IBI practitioner Smith has stepped in to help Branden with his therapy, though the cost isn't cheap.
"The money thing hasn't phased me yet; we'll worry about it later," she said, adding that "anything we have to sacrifice (for Branden's treatment) will be so worth it."
Regardless of the money involved, the importance lies in Branden getting his therapy, said Hayward, who added that she's was surprised by the quick rapport she's seen build between Branden and Smith.
"He came up to me and said he 'likes Miss Melanie,'" she said.
"Seeing him respond like this, I know she's going to help him a lot."
A friend of the Hayward family, Sarah Guay, will be hosting a garage sale on Aug. 30 from 7:30 a. m. until noon with proceeds going to Branden's cause. The sale will consist mainly of children's items and will be located at 38 Autumn Place in St. Catharines.
If interested in donating items for the sale, or for more information on the event, contact Guay at 905-687- 6639.
Hayward will be hosting a fundraiser at Club Richelieu on Oct. 26 to help support Branden's IBI therapy, as well as putting a percentage of the funds towards Autism Society Ontario.
The event will have family-oriented activities from 2 p. m. to 6 p. m. with food, inflatables and face painting for children, and the evening will be geared towards the adults with live music, food and prizes.
Children under five and families with autistic children will be admitted free to the fundraiser.
"It's not always easy to go out for a family with an autistic child," said Hayward, who hopes to make the day enjoyable for everyone.
Tickets for the event are $5 and are available at Kay's Korner Variety on Thorold Road or by contacting Hayward at 905-732-4959.
A trust fund has been set up in Branden's name at TD Canada Trust, branch 0129, account number 6290991, for those interested in donating to his cause.
Copyright © 2008 Welland Tribune

----------------------------------


This from Nova Scotia MP Peter Stoffer, as printed in their local media:


From: http://www.halifaxnewsnet.ca/index.cfm?sid=164376&sc=611

_________________________________________
Helping kids with autism shouldn't be a lottery
BOBBI-LYNN HALL (ON THE TOWN)
Halifax News Net
Last week, there was a picnic held in Sackville for families and friends affected by ASD (autism spectrum disorder). Sadly, the two hours of laughter and sunshine was overshadowed by the talk of a prominent HRM surgeon who had uprooted his family and moved out west to receive better treatments for his child, who has autism.

The challenges of raising a child with autism are the same across the country, but the support is not. As the mother of a child with ASD, I understand the helplessness felt by parents when it comes to the lack of funded treatments for children with autism in this province.

It's devastating enough to find out that your child has a disorder that will affect him or her for his entire life; a disorder that could make him unable to communicate or make friends or experience things in life that most of us take for granted, like falling in love, fulfilling a dream or having a child of his own.

But knowing that there are treatments and programs out there that could help, and that some children get this treatment while others do not, is heartbreaking.

In Nova Scotia, there are children receiving Early Intensive Behaviour Intervention, a treatment proven to improve vocabulary and social skills and reduce behaviour issues in most children with ASD, but it's based on a lottery system.

We all talk about how great it would be to win the lottery and what we'd spend the money on. But what if your child's future was dependent on winning a lottery and what if you didn't win? Would you be thinking maybe if you had picked a different number, or maybe if you had bought your ticket last week instead of this week, that maybe things would have been different and maybe your child would be the one receiving the treatments that could help him experience things that otherwise may not have been possible?

I love Nova Scotia. This is my home. I brag about it everywhere I go.

That's why it broke my heart when a mom of an ASD child called me to say she and her husband were moving here from Alberta. She wanted me to tell her about the services and support we have out here for her daughter. What could I say?

I told her if it was me, I'd stay exactly where I was.

As any party planner knows, holding an outdoor event is pretty much a crapshoot. You set your venue, book your entertainment, lay down your deposits and then cross your fingers and pray for sunshine.

I'm not a meteorologist, but I do know this whole 50 per cent chance of rain, 50 per cent chance of sunshine is frustrating.

On the Wednesday before our annual Bedford Sackville Autism Support Picnic, I checked my computer and there was a little yellow cartoon sun showing for Sunday, but by Saturday there was no cartoon sun at all, just a big cloud with rain and lightening bolts shooting through it.

So I stopped looking at the computer and began to pray. Sure enough, the day started with a big cloud, but then the sun came out and we were good to go.

My friend Paulette and I (we started the Bedford Sackville Autism Support group) hold a picnic at the Kinsmen Park in Sackville for family and friends of children with autism.

It's a great opportunity to create a little awareness and, more importantly, give our kids a chance to be themselves and our parents a little break from trying to explain behaviours that can be a little, or a lot, different than those of "typical" kids.

This year we had a bouncy castle, a maze and a big worm-like thing for the kids to crawl through.

There was a barbeque, lots of games and, of course, our hero: Milo the Clown.

All ages

There were young children who had just been diagnosed as well as young adults running around, having a blast. All were at different functioning levels, but all had equal amounts of fun. My favourite part of the day is always the balloon release.

Throughout the day, we ask people to write down their wishes and then, just before the picnic ends, we tie them to our environmentally safe balloons while someone sings, When You Say Nothing At All as performed by Allison Krauss.

We let our balloons go and we watch our wishes fly way up to the sky, then we wait for them to come true. It's emotional, and it's beautiful.

I wrote down two wishes this year; one was for understanding and one for that little cartoon sunshine to show up again next year.

blhall@eastlink.ca

Have something going on around town? Let me know.

-----------------
From CTV, a story that can make us all proud, pictures on the website:
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20080815/CGY_shoes_stephen_080815/20080815/
Kind sole
Updated Fri. Aug. 15 2008 6:04 PM ET
ctvcalgary.ca
An Airdrie boy with a big heart and an even bigger dream gave some of Calgary's homeless kids a back to school gift on Friday.
Stephen McPhee told his parents that he wanted to do something to help homeless children so they formed the charity "Stephen's Backpacks Society" to take on the task.
Stephen and his supporters collected 600 pairs of brand new children's shoes and donated them to Inn from the Cold who will distribute them to the needy kids.
Last Christmas the 8-year-old, who suffers from autism, rustled up nearly 300 backpacks stuffed with school supplies and gave them to the kids.
"I think a lot of times we become very desensitized because there are so many things going on in the world and sometimes it takes a child to say hey, this shouldn't be and that's what I've learned from Stephen," said Nancy McPhee, Stephen's mom, "This shouldn't be and we can't get them off the street but we can certainly help make their lives a little happier."
The McPhee's plan to continue the shoe drive and are already getting ready for their Christmas backpack campaign.
For volunteer or donation information click on the link.

--------------------
From the Montreal Gazette:
Autistic kids get extended summer fun

KAREN SEIDMAN
The Gazette

Thursday, August 21, 2008


While most kids will be thinking about back-to-school at this time of year, a special group of West Island adolescents will still be engaged in summer fun thanks to a new program being offered for autistic kids.
The program is for children with higher functioning autism, Asperger or pervasive developmental disorder, and it will offer them an opportunity to develop their social and behavioural skills while doing what kids like to do best in the summer: have fun.
Darlene Vais, director of Club Education, a recently-opened learning and tutorial centre in Beaconsfield, said the social outings activity program was created to meet a need in the community.
"It's for kids who might find it hard to find a program, especially in the last two weeks of August," Vais said. "It's not a clinical program, but it's a companion to a clinical program because we will deal with peer interaction, social skills and life skills."
But whereas many of these children can often only find clinical programs to attend, even during the summer, this program aims to give them a break from the stresses of those kinds of programs.
"You learn a lot through recreational things," Vais said. "The program will give the kids a chance to practice their social and life skills, and to have fun doing it."
Helen Finn, whose son, Terry, has high-functioning autism and is hearing-impaired, embraced the program as something that will really boost the morale of her 16-year-old son.
"I really believe that some skills just won't sink in if you're not having fun while you're learning them," said Finn, who lives in Ste. Anne de Bellevue. "It's a huge challenge finding programs at this age, and finding something that's fun is really impossible."
Vais said there will be only six to eight kids in each group, and there will be a one-to-three ratio between kids and staff. The participants will go on outings like bowling, going to the market, picnics and mini-putt.
"It's a chance to normalize things for these kids," Vais said. "It puts them in a normal social situation."
The goal, she said, is for them to have fun while practising social skills like how to maintain a conversation, how to pick up social cues and to learn behaviour techniques.
Finn said her son is signed up and she hopes the program will be repeated.
"These kids are intelligent, but they don't interact socially," she said. "A program like this is huge. It means a lot."
For information on the program, offered from Aug. 25 to 29, call 514-674-0914.
kseidman@thegazette.canwest.com
© The Gazette (Montreal) 2008


-----------------------
From the Toronto Star, Junior Journalist column, kudos!!!!

Dispelling preconceived notions about disabled
August 18, 2008
Jessica Ng

Generations of misinformed people have led to the baggage of pre-conceived notions surrounding the disabled. The developmentally disabled, in particular, are no strangers to these misconceptions.
The American Association on Intellectual and Developmental Disabilities describes a developmental or intellectual disability as being "characterized by significant limitations both in intellectual functioning and in adaptive behaviour as expressed in conceptual, social, and practical adaptive skills."
Intellectual disabilities, such as autism, affect three per cent of the population. About one third of these individuals are severely to profoundly impaired.
Under the Banyan Tree Centre is a non-profit organization based in Markham that caters to these unique individuals. The centre is committed to helping those with intellectual disabilities live an independent life in their community.
Pansy Yip, a program assistant at the centre, said there are a number of misconceptions surrounding individuals with developmental disabilities.
With autism, the severity of the condition or even the condition itself may not be obvious simply from appearance "because they can't show it on their faces," says Yip.
Many autistic individuals rely on other means, such as hand gestures and sounds, to relay what their communication skills can't. Karen, a 7-year old with autism, who attends the centre daily, uses a few sign-language gestures to communicate.
Yip says many of these individuals are capable of living an independent and fulfilling life.
"They know when to carry out tasks, but they might need help in how to. Eventually, some of them will be able to take care of themselves."
Jessica Ng is a Grade 12 student in Toronto. She heads the newspaper at her school and hopes to pursue a career in journalism.

----------------------

And this printed in the Globe and Mail a few weeks ago, I just found it and felt it was of value to share:
Our disability welfare system needs rebuilding
Provinces and territories must amend legislation to ensure benefits are not clawed back
ANDRE PICARD
From Thursday's Globe and Mail
July 31, 2008 at 9:47 AM EDT
In the 2007 budget, Federal Finance Minister Jim Flaherty announced the creation of the registered disabilities savings plan.
The RDSP is a taxation measure that allows families of children with physical, mental or development disabilities to invest up to $200,000 in a tax-free shelter, much like a registered education savings plan used to accrue funds for a child's university or college education.
Because not every family has sufficient money to invest, the RDSP program was supplemented with two other measures, the disability savings grant and the disability savings bond that will provide cash contributions to plans.
Over time, RDSPs will provide billions of dollars to supplement income, enable home ownership and enhance quality of life for hundreds of thousands of Canadians with disabilities, many of whom rely on social assistance and live in poverty.
According to the RDSP calculator created by the Planned Lifetime Advocacy Network (PLAN), the family of a nine-year-old disabled girl that invests $1,500 annually over 20 years would be able to provide her with $1.3-million in additional income between the ages of 39 and 83.
Under federal legislation, a person with a disability can continue to benefit from other social programs - the Guaranteed Income Supplement, Old Age Security Pension and Canada Pension Plan - even if they withdraw funds from their RDSP.
However boring, the arcana of tax law do matter.
For the federal plan to really achieve its goal of lifting people with disabilities out of poverty, the provinces need to get on board, quickly.
Currently, recipients of social assistance who receive income from other sources (from employment or gifts) have their benefits clawed back. They can also be deemed ineligible for assistance based on their level of assets.
Clearly, it would be a perversity of public policy for provinces and territories to claw back funds set aside for people with disabilities by their families.
It would be equally perverse to say, as a matter of policy, that disabled people are ineligible for social assistance because they have assets in a RDSP.
Yet, to date, only British Columbia, Newfoundland and Yukon have exempted the RDSP as an asset and/or income.
What are the other eight provinces and two territories waiting for exactly?
How dare they consider pilfering money from the pockets of people with disabilities and their families?
The disability community does not have powerful lobbyists and chummy connections in corridors of power. But that is no reason to ignore their needs and exploit their financial vulnerabilities.
RDSP plans go on sale in December. There is no excuse for every province and territory to not have committed to amend its rules by that time.
Parents of children with disabilities - bipolar disorder, autism, spina bifida and countless other chronic conditions - already have a tremendous burden of care.
When their children grow into adulthood - as the vast majority now do thanks to medical advances - the cold reality is that most will be condemned to a life of poverty.
People with severe disabilities who are unable to work - about 500,000 countrywide - receive social assistance payments in the range of $10,000 a year in most provinces.
Attempts to break free of this poverty trap usually result in benefits being clawed back, though there are some innovative programs in British Columbia, Manitoba and Newfoundland that allow people with disabilities to supplement their benefits without being penalized.
The RDSP is an attempt to further change that untenable and counterproductive situation.
Al Etmanski, co-founder of PLAN, the group that successfully advocated for the creation of the RDSP - the world's first disability savings plan - noted, "Canada is the first country to recognize a global demographic tsunami - the first generation of people with disabilities to outlive their parents."
Mr. Etmanski knows the issue intimately, first and foremost as a parent. His daughter Elizabeth has Down syndrome, but at 29 is a college graduate bursting with life. In fact, the group got its start because parents such as Mr. Etmanski began asking the question: "What happens to our disabled children when we die?"
That led them to focus on making their lives better and richer in the present, all the while planning for the future, financially and otherwise.
For far too long people with disabilities have been hidden away, quietly cared for by their parents, with occasional assistance from an impersonal service delivery system.
PLAN parents decided what their children needed were not services and programs that keep them isolated and poor, but the rights and responsibilities of citizenship that make them contributing members of society.
Their audacity has changed the lives of many for the better. But improving the lives of some individuals through the astute use of tax laws and the creation of social networks that allow people with disabilities to live independently - two of PLAN's specialties - is only the beginning.
The disability welfare system in this country needs to be torn down and rebuilt.
The creation of the RDSP is a small step in this direction, one the provinces should support wholeheartedly, not undermine.
-----------------------

And from British Columbia and Autism Speaks, the web link includes photos from the event:

http://www.autismspeaks.org:80/sponsoredevents/aaa_golf_canada_2008.php

Athletes Against Autism Holds First Canadian Golf Event

With over 20 athletes and celebrities in attendance, the Inaugural Athletes Against Autism Golf Tournament in Kelowna, British Columbia raised nearly $200,000 in support of the research, awareness, and outreach programs of Autism Speaks Canada.

Sunday evening, the Grand Okanagan Resort welcomed over 175 guests to a cocktail hour, silent auction, dinner program and live auction hosted by internationally renowned motivational speaker Linda Edgecombe.

On Monday, Harvest Golf Club hosted the golf tournament, which included four hole-in-one contests: two for an Infiniti G35, two for 20' boats. In addition to 50/50 contests for putting and Accurate Drive sponsored by Scotia McLeod, there were contests for Closest to the Pin and Longest Drive, followed by a BBQ Dinner & Awards Reception.

Athletes and celebrities on hand to help support the event were AAA co-founders Olie Kolzig, Byron Dafoe and Scott Mellanby. AAA members attending included Boston Bruin Chuck Kobasew, Head Coach of the Edmonton Oilers Craig McTavish, Vancouver Canuck Matt Pettinger, former producer of Hockey Night in Canada Ralph Mellanby, actor Lochlyn Munro, former Calgary Flame Mike Vernon, along with many others.

Special thanks to our major sponsor Pareto Platform and our supporting sponsors: Mission Hill Winery, Cucina Cabinetry, Pushor Mitchell, Okanagan Spring Brewery, The NHL, Aquilini, Edgecombe Builders, Benson Salloum Watts Law Firm, Cordell Rich Infiniti/Nissan, Trepanier Manor, RPM, All Weather Windows, Scotia McLeod, Prism Distributions, the Kelowna Rockets, Guardian Life, Kelowna Capital News, The Daily Courier, Standard Life and Capri Insurance.

---------------------

This from Karen Robinson:


Hi Everyone,

There is still plenty of space in this workshop. Please forward this email to your lists or anyone you think might be interested in attending.

Thanks,
Karen Robinson
AFASE at School
www.afase.com
905 427 7524
AFASE at school

Presents
Advocating For Appropriate Special Education

Saturday, September 6 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
Special Education.

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

Ajax Public Library
55 Harwood Avenue S.
Ajax, Ontario
L1S 2H8

SPACE IS LIMITED - REGISTER EARLY TO RESERVE YOUR SPOT

*Early bird rate: $85.00
*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

*Fee includes refreshments and handouts for each presentation

----------------------

From OACRS news:

OCTC staff to share programming considerations for children with autism at OACRS conference
Considerations allow individuals to take part in certain activities regardless of diagnosis
Wednesday, August 20, 2008 -- Jason Thompson
Katie Downey, a recreation therapist with the Ottawa Children’s Treatment Centre (OCTC), says sharing tools and information related to programming considerations for children with an autism spectrum disorder at the upcoming Ontario Association of Children’s Rehabilitation Services’ (OACRS) annual conference will make it easier for other professionals who are interested in serving this population.
Downey, along with fellow recreation therapist Emily Glossop and program administrator Anne Marcotte, will be at the OACRS conference Oct. 20 to deliver a presentation titled, “Considerations When Developing Therapeutic Recreation Programming for Children and Youth with an Autism Spectrum Disorder.”
The presentation will detail the evolution of recreation and leisure programming at OCTC with a focus on risk management, positive behavioural support strategies and creating an adaptive environment.
Downey says the presentation will highlight practical tools that can be used to reduce maladaptive behaviours in addition to environmental and transitional tools to ease the child into the program and to allow for the greatest success.
“We go to the same environments as we would with any of our clients, we just prepare our staff differently because of the different considerations,” Downey says. “We’ve done a ton of different activities but we adapt the activity to meet the individual’s needs as opposed to saying an individual couldn’t do that activity because of the diagnosis.”
Some of the programming considerations include a site visit ahead of time if they are taking kids into the community to ensure the location is accessible. Downey says they also need to make sure the environment is not over-stimulating, but not under-stimulating either.
With these considerations, activities children and youth with an autism spectrum disorder have been able to take part in include swimming, the movies, jumping on a trampoline, shopping at the mall, music, martial arts, woodworking and trips to the grocery store to purchase food to cook a meal.
Downey says an advantage of this brand of programming is that individuals are able to spend time with their peers.
“When they come to the Ottawa Children’s Treatment Centre, they’re able to be with other children and oftentimes they may share similar interests. From that specific activity, a friendship can develop that otherwise wouldn’t have been found.”
Click here for more information on programs and services offered at OCTC.
Click here for more information on the OACRS annual conference, scheduled for Oct. 19 - 21 in Waterloo.
If you have feedback on this article, please contact the newsroom at 800-294-0051 or e-mail jason(at)axiomnews.ca.
------------------


From the Caledon Enterprise newspaper:

Tee off for autistic children
Wednesday August 20 2008


The Surface Mount Technology Association (SMTA), is holding their annual Charity Golf Tournament in Caledon in support of Shining Through Centre for Children with Autism.
The event includes an 18-hole scramble format round of golf, power carts, full-course dinner, hole contests, prizes and much more.
The 12th annual Surface Mount Technology Association Charity Golf Tournament will be held on Thursday, August 28 also at Glen Eagle Golf. Please note the golfing registration deadline for both tournaments is one week prior.
To register or for more information, please call Shining Through Centre at (905) 851-7955.
The Shining Through Centre was founded in 2001 to provide an intensive and comprehensive educational programme for children with Autism. Located in a historic home in Woodbridge, Shining Through Centre is regarded as one of the premier sites in Ontario for support for children with Autism.
The programme is based on scientifically-validated procedures of Applied Behavioural Analysis (ABA), offered through one-on-one instruction for each child. For more information on the Shining Through Centre, visit www.shiningthrough.ca.



-----------------

And this from the US on CBS, more on the vaccine debates going on in their court system, thanks to some of our listmates for sharing this for all of us:


http://www.cbsnews.com/blogs/2008/08/18/primarysource/printable4358968.shtml

CBS News


August 18, 2008

Vaccine Watch: A Third Vaccine Court Case
(AP / CBS)
With thousands of autism cases pending in federal vaccine court, and numerous test case decisions coming this fall, some are looking to see what-- if anything-- can be learned from prior court decisions. While most vaccines are well-tolerated by most children, side effects do rarely occur and victims are entitled to compensation in this special vaccine court. Previous blogs have discussed the case of Hannah Poling: a thimerosal (mercury) vaccine case the government conceded last fall (the mercury exposure in childhood vaccinations has been greatly reduced in recent years due to safety concerns); and a 1986 case in which the court determined vaccinations aggravated a pre-existing condition called "TS " in a child, resulting in his mental retardation and autism.

Now, CBS News has obtained details of a third case of vaccine injury in a child born in 1974. It may be one of the first cases in which the government compensated a child who became mentally retarded and developed autistic behavior after a vaccine injury. In this case, unlike the two others we've looked at, the child did not have a known pre-existing condition. What does this tell us that's relevant to the current debate over vaccines and autism/ADD? Medical experts are likely to differ on that front. Another "anomoly"? Early evidence of a possible vaccine/autism link that the government hasn't publicly discussed? Did the child have a pre-existing susceptibility to vaccines that simply went undiscovered? No matter the interpretation, the case proves the vaccine/autism debate has been going for at least two decades.

In excerpts from the case below, the government agreed the child suffered "a residual seizure disorder" after his second Diphtheria, Tetanus & Pertussis (DPT) vaccine but attempted to argue that the child's mental retardation and brain injury were unrelated to the seizure disorder and were, instead, caused by his autism. On the other hand, the court found that the autistic behavior, brain injury and mental retardation were all part of the vaccine injury. (It is significant to note that this case involves injury from a DPT vaccine that has since been replaced by what is believed to be a safer version).

Case Excerpts as written by the vaccine court judge: Elizabeth E. Wright, Special Master

FACTS

CHILD was born on August 23, 1974, the 9 lb. 9 oz. product of an uncomplicated pregnancy and delivery. CHILD developed normally until the age of four months when he was administered his second DPT vaccination on December 23, 1974... That evening, he experienced a grand mal seizure. CHILD's mother... took CHILD to the... emergency room where he was found to have a fever of 101.8 degrees at that time and a bulging fontanelle...CHILD had a seizure on March 25, 1975, with a temperature of 102 degrees. The next day, he had another seizure with a fever less than 102 degrees...On April 15, 1975, CHILD experienced a limited to those expenses that reasonably might be incurred for CHILD's residual seizure disorder, not for expenses he might accrue because of his mental retardation, developmental delay and autistic behaviors. vaccination on December 23, 1974, and that no alternative cause for such encephalopathy has been satisfactorily shown.

Current Status

Today (written in 1991), CHILD is 16 years old, approximately five feet five inches and weighs one-hundred and thirty pounds, has intractable seizures, an IQ of approximately 50 or less, and is unable to perform any of his self care... he requires considerable attention and handling. (CHILD's mother) has been attempting to do most of his care by herself while also raising a five year old daughter. CHILD cannot be left alone for any period of time...He

The question of encephalopathy.

(Government physician) believes that CHILD currently suffers fpetit mal seizure without an associated fever... CHILD apparently did well until mid-July 1975, when he had four seizures, with fever around 100.7 degrees... CHILD had additional seizure activity in November 1975. Again in February 1976, CHILD had seizures. At that time, a repeat EEG was grossly abnormal...when CHILD was 21 months of age, (CHILD's doctor) noted that CHILD had a vocabulary of only two to three words. At that time, (CHILD's doctor) discussed... the possibility that CHILD was mentally retarded and developmentally delayed. CHILD currently is severely mentally retarded and has an intractable seizure disorder.

(The government) respondent has conceded that CHILD suffered a residual seizure disorder as set forth in the Vaccine Injury Table, but argues against a finding that CHILD also suffered an encephalopathy (brain injury). Moreover, (the government) contends that CHILD suffers from autism, which has produced his severe mental retardation and developmental delay. Consequently, (the government) urges that compensation in this case be rom autism and mental retardation that are the result of an independent underlying neurologic condition that pre-dated the vaccination. However, all tests that were conducted to determine possible causes for CHILD's condition have revealed none. Furthermore, (government physician) has posited no origin of any underlying neurologic condition. (Government physician) would have us believe that CHILD's grand mal convulsion following his second DPT vaccination was simply a manifestation of benign febrile seizures and that CHILD had another concurrent underlying (but etiologically undetermined) neurological disorder which later produced his severe mental retardation and autism.
I reject this theory for several reasons. First, the Vaccine Act's defines encephalopathy as "any significant acquired abnormality of, or injury to, or impairment of function of the brain." Section 14(b)((3)(A). This definition is extremely broad. CHILD's initial grand mal seizure indicated an impairment of function of the brain. The question becomes whether this was a benign event unrelated to any lasting neurological sequelae. In my view... (CHILD's treating pediatric neurologist) is in a better position to accurately assess CHILD's illness than (government physician). Beginning in 1980, when he first evaluated CHILD, (CHILD's neurologist) diagnosed CHILD as having static encephalopathy probably related to the time of his first seizure at four months of age.

Based on the foregoing, I find that there is a preponderance of the evidence that CHILD suffered an encephalopathy within 72 hours of the administration of a DPT is ambulatory, slightly stooped, and moves in slow motion. He presents with a continuous drool which is apparently due to his dropped head and mouth position. His hands and feet are often cold and bluish. The cause of his circulation problems is unknown. He is incontinent and not toilet trained...Despite his seizure condition, CHILD is relatively healthy with minor problems of constipation and drowsiness. He will often place his fingers into his ears or clap his hands over his ears. CHILD has been treated over the years for recurrent ear infections. CHILD's day at both home and school consists primarily of aimless wanderings or sitting for long periods on the ground "indian style". CHILD is frequently absent from school and
has no consistent programming. CHILD receives $499 per month from SSI and is Medical eligible. He will most likely lose both of these benefits under an award from this Program.
And on the vaccine debate issue, this from CTV, from Associated Press;



----------------------------



Jump in measles outbreaks worries health officials
Updated Thu. Aug. 21 2008 1:54 PM ET
The Associated Press
ATLANTA -- The number of measles cases in the U.S. is at its highest level since 1997, and nearly half of those involve children whose parents rejected vaccination, government health officials reported Thursday.
The number of cases is still small, just 131, but that's just for the first seven months of the year and doctors are troubled by the trend. There were only 42 cases for all of last year.
"We're seeing a lot more spread. That is concerning to us," said Dr. Jane Seward, of the U.S. Centers for Disease Control and Prevention.
Pediatricians are frustrated, saying they are having to spend more time convincing parents the shot is safe.
"This year, we certainly have had parents asking more questions," said Dr. Ari Brown, an Austin, Texas, physician who is a spokeswoman for the American Academy of Pediatrics.
The CDC's review found that a number of cases involved home-schooled children not required to have the vaccines.
Measles, best known for a red skin rash, is a potentially deadly, highly infectious virus that spreads through contact with a sneezing, coughing, infected person.
It is no longer endemic to the United States, but every year some Americans pick it up while traveling abroad and bring it home. Measles epidemics have exploded in Israel, Switzerland and some other countries. But high U.S. childhood vaccination rates have prevented major outbreaks here.
In a typical year, only one outbreak occurs in the United States, infecting perhaps 10 to 20 people. So far this year through July 30 the country has seen seven outbreaks, including one in Illinois with 30 cases, said Seward, deputy director of the CDC's Division of Viral Diseases.
None of the 131 patients died, but 15 were hospitalized.
Childhood vaccination rates for measles continue to exceed 92 percent, but outbreak pockets seem to be forming, health officials said.
Of this year's total, 122 were unvaccinated or had unknown vaccination status. Some were unvaccinated because the children were under age 1, making them too young to get their first measles shot.
In 63 of those cases -- almost all of them 19 or younger -- the patient or their parents refused vaccination, the CDC reported.
In Washington state, an outbreak was traced to a religious conference, including 16 school-aged children who were not vaccinated because of parents' beliefs. Eleven of those kids were home schooled and not subject to vaccination rules in public schools.
The Illinois outbreak -- triggered by a teenager who had traveled to Italy -- included 25 home-schooled children, according to the CDC report.
The nation once routinely saw hundreds of thousands of measles cases each year, and hundreds of deaths. But immunization campaigns were credited with dramatically reducing the numbers. The last time health officials saw this many cases was 1997, when 138 were reported. Last year, there were only 42 U.S. cases.
The American Academy of Pediatrics has made educating parents about the safety of vaccines one of its top priorities this year, in part because busy doctors have grown frustrated at the amount of time they've been spending answering parents' questions about things they read on the Internet or heard from TV talk shows.
In June, the CDC interviewed 33 physicians in Austin, suburban Seattle and Hollywood, Fla., about childhood vaccinations. Several complained about patient backlogs caused by parents stirred up by information of dubious scientific merit, according to the CDC report.
Questions commonly center on autism and the fear it can be caused by the mercury-based preservative that used to be in most vaccines. Since 2001, the preservative has been removed from shots recommended for young children.
Brown said she wrote a 16-page, single-spaced document for parents that explains childhood vaccinations and why doctors do not believe they cause autism. She began handing it out this spring, and thinks it's been a help to parents and a time-saver for her.
"People want that level of information," she said.

From a listmate

> As forwarded from our Regional Coordinator... please pass the info along
> to
> all people whom you believe would be interested in supporting the cause of
> persons with intellectual disabilities fight for respect and dignity!
> Katrina O'Neill
>
> My apologies for the unsolicited forward (SB):
>
> "If you are a fan of dignity, acceptance and the human race, then you
> are already a fan of Special Olympics."
>
> Special Olympics International has spoken out against the film "Tropic
> Thunder."
>
> On August 13, "Tropic Thunder," a DreamWorks production starring Ben
> Stiller, Robert Downey Jr., Jack Black and several other Hollywood
> actors, opened in movie theaters nationwide. "Tropic Thunder" has been
> marketing as a satire about Hollywood actors and the movie industry in
> general. It is intended to be an adult comedy – with crass jokes and
> scenes to make moviegoers laugh. In "Tropic Thunder," there is a
> movie-within-the movie called "Simple Jack…Once upon a time there was
> a retard" where Ben Stiller plays a simple man with intellectual
> disability. Both "Tropic Thunder" and "Simple Jack" contain extremely
> offensive material promoting the idea that a "retard" is funny.
>
> Special Olympics, along with a coalition of national disability
> organizations, has engaged in conversations with DreamWorks to address
> the content, requesting DreamWorks take action to delete these scenes
> from the film and marketing platform, as well as to promote public
> service announcements and educational opportunities about people with
> intellectual disabilities. Unfortunately, those scenes will not be
> deleted.
>
> As a result, Special Olympics has decided to lead an effort to
> publicly address the use of the "R-Word." Currently, Special Olympics
> Programs are engaged in a variety of ways - viral emails, protests at
> movie theaters, communicating with staff, volunteers, athletes and
> families. Special Olympics' response to "Tropic Thunder" has been
> receiving a lot of media coverage, which you may have seen.
>
> Please help make a stand. Visit www.r-word.org to take a pledge not to
> use the R-word - even if you don't mean it that way.
>
> You can also help by boycotting the film "Tropic Thunder."
>
> Questions regarding this issue can be addressed to Tracy DeVries at
> tdevries@specialolympics.org.
>
> Thank you,
>
> Sean Bryan
> Region 8 Coordinator
> Special Olympics Ontario
>

From a listmate
From: http://www.halifaxnewsnet.ca/index.cfm?sid=164376&sc=611
Note: the MP from Sackville, Nova Scotia is Peter Stoffer (NDP), one of our biggest allies on Parliament Hill.
_________________________________________
Helping kids with autism shouldn't be a lottery
BOBBI-LYNN HALL (ON THE TOWN)
Halifax News Net
Last week, there was a picnic held in Sackville for families and friends affected by ASD (autism spectrum disorder). Sadly, the two hours of laughter and sunshine was overshadowed by the talk of a prominent HRM surgeon who had uprooted his family and moved out west to receive better treatments for his child, who has autism.

The challenges of raising a child with autism are the same across the country, but the support is not. As the mother of a child with ASD, I understand the helplessness felt by parents when it comes to the lack of funded treatments for children with autism in this province.

It's devastating enough to find out that your child has a disorder that will affect him or her for his entire life; a disorder that could make him unable to communicate or make friends or experience things in life that most of us take for granted, like falling in love, fulfilling a dream or having a child of his own.

But knowing that there are treatments and programs out there that could help, and that some children get this treatment while others do not, is heartbreaking.

In Nova Scotia, there are children receiving Early Intensive Behaviour Intervention, a treatment proven to improve vocabulary and social skills and reduce behaviour issues in most children with ASD, but it's based on a lottery system.

We all talk about how great it would be to win the lottery and what we'd spend the money on. But what if your child's future was dependent on winning a lottery and what if you didn't win? Would you be thinking maybe if you had picked a different number, or maybe if you had bought your ticket last week instead of this week, that maybe things would have been different and maybe your child would be the one receiving the treatments that could help him experience things that otherwise may not have been possible?

I love Nova Scotia. This is my home. I brag about it everywhere I go.

That's why it broke my heart when a mom of an ASD child called me to say she and her husband were moving here from Alberta. She wanted me to tell her about the services and support we have out here for her daughter. What could I say?

I told her if it was me, I'd stay exactly where I was.

As any party planner knows, holding an outdoor event is pretty much a crapshoot. You set your venue, book your entertainment, lay down your deposits and then cross your fingers and pray for sunshine.

I'm not a meteorologist, but I do know this whole 50 per cent chance of rain, 50 per cent chance of sunshine is frustrating.

On the Wednesday before our annual Bedford Sackville Autism Support Picnic, I checked my computer and there was a little yellow cartoon sun showing for Sunday, but by Saturday there was no cartoon sun at all, just a big cloud with rain and lightening bolts shooting through it.

So I stopped looking at the computer and began to pray. Sure enough, the day started with a big cloud, but then the sun came out and we were good to go.

My friend Paulette and I (we started the Bedford Sackville Autism Support group) hold a picnic at the Kinsmen Park in Sackville for family and friends of children with autism.

It's a great opportunity to create a little awareness and, more importantly, give our kids a chance to be themselves and our parents a little break from trying to explain behaviours that can be a little, or a lot, different than those of "typical" kids.

This year we had a bouncy castle, a maze and a big worm-like thing for the kids to crawl through.

There was a barbeque, lots of games and, of course, our hero: Milo the Clown.

All ages

There were young children who had just been diagnosed as well as young adults running around, having a blast. All were at different functioning levels, but all had equal amounts of fun. My favourite part of the day is always the balloon release.

Throughout the day, we ask people to write down their wishes and then, just before the picnic ends, we tie them to our environmentally safe balloons while someone sings, When You Say Nothing At All as performed by Allison Krauss.

We let our balloons go and we watch our wishes fly way up to the sky, then we wait for them to come true. It's emotional, and it's beautiful.

I wrote down two wishes this year; one was for understanding and one for that little cartoon sunshine to show up again next year.

blhall@eastlink.ca

Have something going on around town? Let me know.



From a listmate

Autism Speaks, Our Events, First Ever Canadian Athletes Against Autism Golf Event


Google alert
http://www.canada.com/edmontonjournal/news/business/story.html?id=9de76464-2f30-451a-b641-8ec4b6aaa5ab

Canine comfort opens closed world
Autistic child paired with service dog allows boy a degree of freedom, sense of hope
Scott McKeen, The Edmonton Journal
Published: Friday, August 22
God's work, if you'll allow me to call it that, is often done in places far from church or the spotlight.
Sometimes it is even done by creatures who know nothing of our human notions of God or work. Texas is such a creature.
Texas, a two-year-old yellow Labrador retriever with a pleasing disposition, is full of love for human beings. He is so in love with humans that he puts up with their tedious habit of sitting and exchanging throat noises. Texas naps while they garble and mumble.
View Larger Image
Xander McTavish, 7, and Texas have become fast friends since they met. The dog has become an instant companion for the autistic boy.
Shaughn Butts, The Journal
Texas also naps in-between his time with Xander, a seven-year-old boy with a condition of altered consciousness. Xander's condition is so profound he doesn't exchange throat noises with other humans. Texas doesn't mind.
Xander -- short for Alexander -- was diagnosed with autism as a four-year- old. Xander doesn't return hellos for reasons only known to his inner universe. Instead, he might reply with a word he'd heard earlier that day.
Parents of autistic children are under constant, devilish stress. Their child looks like any other child, yet may not reward them with words or physical affection. Their child may erupt in public, causing strangers to stare and judge.
Their child can suddenly bolt for the street, chasing something that intrigues their mind. Their child might wake many times during the night, panicked or again intrigued. Their child requires round-the-clock supervision. Their child often causes depression, even divorce.
God's work, if you'll allow me to call it that, is being done in a humble building in a light-industrial area in northwest Edmonton. The people inside the building make up a society called Dogs With Wings.
They have, for years now, nurtured, loved and trained dogs to help and guide blind and disabled people. A year ago, they began training dogs to be companions for kids with autism.
The idea started in Ontario a few years back and is spreading throughout the world.
Wade Beattie was one of the pioneers in the field and brought his expertise to Dogs With Wings, the only training centre of its kind in Alberta.
Dogs trained for autistic children are done so with three main goals in mind: Safety, independence and companionship. Because autistic children are a constant flight risk, they can be tethered to their dog, instead of constantly in their guardian's grip.
But even though they are tethered to a dog, who acts as a kind of anchor if the child bolts, they're also taught to guide the dog by holding onto a handle. This detachment from a guardian's constant grasp creates a greater sense of independence and freedom in the child. Dogs have a calming effect on people. This is true of autistic children. It is also true for strangers who are suddenly exposed to an autistic child. If a child is walking with a jacketed guide dog, the mood of everyone changes. Understanding replaces judgment.
Suddenly, the world opens for the child and his parents. A walk down a street, in a park or inside a mall is much more possible. Restaurants are possible. School is possible.
Beattie says the real world is not like a Disney movie. There are few miracles. Autistic kids don't always bond immediately with the dog. They don't suddenly emerge from their inner world once they get a companion dog. But their lives do improve, their parents' lives improve, and some kids become much more outgoing and engaged.



Google alert
http://www.northernlife.ca/News/Lifestyle/2008/07-24-08-autisticTOP.asp?NLStory=07-24-08-autisticTOP

Autistic woman on cross-Canada tour view photo and story on link above

Date Published | Jul. 29, 2008




From A LISTMATE

The reason why this U.S. Judge is able to protect this child’s right to accessing education is because of the recommended new piece of Legislation which could be easily adopted by Canada, known as IDEA.

For the record, the Federal Conservative Government in their party policies DID promise a CANADIAN WITH DISABILITIES ACT. When I asked Jim Flaherty about it, he didn’t even know they had promised Canadians this important new piece of legislation much less where it was in development. A National Autism Strategy is needed, but one that has PROTECTION from provincial discrimination. There is in fact MUCH that the Federal Government can do in Canada WITHOUT directly telling the provinces what to do when it comes to individuals with Autism and in a broader sense disabilities. In fact the U.S. ALREADY has ALL of these three pieces of Legislation. Shame on Canada, there is no horn to be touted here when we sadly lag behind our American Cousins. No need to re-invent wheels here either, our friends to the South have already done all the hard work and it IS protecting those who need it ensuring equal access for them.

Federal Legislation
What is urgently needed now are three pieces of federal legislation: 1) a Canadians with
Disabilities Act (CDA), 2) a Mental Health Parity Act (MHPA) and 3) a Federal Individuals with Disability Education Act (IDEA). All these federal laws are what makes the United States a remarkably better place for people with disabilities to live than Canada. In the U.S., equality in services, jobs, housing, etc., for persons with autism and other disabilities is not optional — it’s the law.

The first piece of legislation, the CDA, is a broad disability rights Act, wherein people with all disabilities are protected from an able-bodied majority that sets the rules (and appoints the judges). The CDA could be modeled after the Americans with Disabilities Act (ADA).** This is strong U.S. Federal disability legislation that has revolutionized disability equality rights in the U.S. This first Act would be relatively quick to enact in Canada since it applies to all disabled people (is broadly based) and would be widely endorsed by a coalition of disabled persons across the country. A CDA is very much in the best interest of every person with a disability. (Appendix 3)
The second piece of legislation, a Mental Health Parity Act (MHPA), would be less broadly based but it is a VERY important piece of legislation for Canada. The MHPA is a law that makes it illegal for health insurance companies to discriminate against coverage for treatments for mental illness or mental disability. In the U.S., there are over twenty-six MHPA’s that have been ratified. In 1996, the U.S. Congress passed the federal Mental Health Parity Act of 1996.*** This kind of vitally important legislation for autism equality in Canada may well face resistance because the very health insurance “companies” that would be affected by the equality law, are all provincial government agencies. In other words, by design, Medicare is a government owned and operated health insurance monopoly in every province that fights tenaciously to keep children with autism out of the health care system. However, this is still very worth pursuing and will help right the unfathomable wrong done by the Supreme Court of Canada in its “shortcuts” Auton ruling. In the alternative, an amendment to the Canada Health Act forbidding discrimination in Medicare on the basis of mental disability would be an important interim step in the right direction. (Appendix 4)
The third piece of legislation, is the Individuals with Disabilities Education Act (IDEA)* This Act, (amended in 2004 and now referred to as the Individuals with Disabilities Education Improvement Act) is a Federal U.S. Act that protects children with disabilities in the educational system. Under this important disability legislation, many thousands of children with autism have had their medically necessary autism treatment programs paid for by the educational system when a child reaches school age. In fact 76% of cases are successful using IDEA to protect the child.[1] In Canada, as we painfully know, the picture is not as rosy when children afflicted with autism reach school. A Canadian IDEA would be extremely beneficial in bringing Canada up to a par with the U.S. in this important regard. Unfortunately, Canada differs markedly from the U.S. insofar as provinces are FAR more powerful than American states in the respective confederations. And, significantly, education in Canada is a provincial issue and responsibility. Regardless, a Canadian IDEA is still very much worth pursuing. (Appendix 5)
Academic Chairs for Medically Necessary Autism Treatment in Every Province
Currently, Canada has not a single academic chair for research or to teach practitioner in the field of medically required, science-based behavioural autism treatment. While we have researchers looking for possible genetic causes for autism, and we have educators teaching outmoded, 1950’s era management strategies for children with special needs
(including autism), we have no true expert academic clinical psychologists across this country in the field of intensive behavioural treatment. In our current era where autism is at shocking epidemic levels, Canada finds itself in the harmful position of having its best
and brightest autism therapists leaving for the U.S. to receive advanced training in American universities. Unfortunately, most are not returning to Canada in sufficiently high enough numbers — we are experiencing a huge “brain drain” in autism treatment capacity. In the same way that Canada has many medical schools across the country to train doctors, so too must we have — and we desperately need — academic chairs and autism centers of excellence across the country to train new generations of home-grown autism treatment professionals. In order to make sure that the right people are hired for academic chairs, it is essential to first establish a national autism directorate to preside over which academics to woo up to Canada.
Independent Inquiry into the Judicial Process
The Auton court case is over. Nothing can be done to formally reverse this profound miscarriage of justice; however, we must expose the process that led to this incomprehensible decision. To do this, the Committees of Justice in both the House and Senate must closely examine all the errors in fact that were made by the seven justices of the Supreme Court of Canada—there are an incomprehensible twenty-two technical errors in the high court’s ruling. FEAT of BC will make all these errors public soon. Based on these shocking errors, there must be a formal, independent inquiry into how and why the Auton case was so inappropriately adjudicated by the Supreme Court. Although this kind of enquiry may not directly help children with autism, it will shine a necessary spotlight on possible government impropriety in the Auton case — political meddling and
…9
FEAT of Ontario Submission – Mental health, Mental Illness and Addiction – Issues and Options for Canada

rule breaking — that affected a purportedly independent judicial process, which is so critical to a free and democratic society. A society that does not respect the rule of law—i.e. the Constitution, is a society that is evolving in a very unhealthy, dangerous direction. People with disabilities may be the proverbial “canary in the cage.”
** http://www.usdoj.gov/crt/ada/statute.html
*** http://www.cms.hhs.gov/hipaa/hipaa1/content/mhpastat.asp.
* http://thomas.loc.gov/cgi-bin/query/z?c105:H.R.5.ENR
[1] Litigating a free and appropriate Education: The Lovaas hearings and cases Yell & Drasgow Journal of Special Education v33 n4 p-205-14 Win 2000

From a listmate

http://www.mercurynews.com/breakingnews/ci_10213603
District must pay autistic boy's private education
The Associated Press
Article Launched: 08/15/2008 05:33:21 AM PDT
SAN MIGUEL, Calif.—A judge says a San Luis Obispo County school district must pay for an autistic boy's $23,000 monthly private-school tuition because it failed to provide the youngster with an appropriate education.
The parents of now-14-year-old Sean Steingruber says the San Miguel Joint Union School District didn't accommodate their severely autistic son's special needs.
State Administrative Law Judge Deidre Johnson agreed, ruling the district must pay for Steingruber?s private education at Heartspring, a center for special needs kids in Wichita, Kan.
———
Information from: The Tribune, http://www.sanluisobispo.com

From
Autism Ontario
n partnership with Autism Ontario, a research team from the Centre for Addiction and Mental Health is interested in looking at the experiences of people with ASD and their families, when the family member with ASD has a crisis. A crisis can be any time when problems get very bad, or when you have to put a lot of effort into keeping things from getting out of control. Autism Ontario will share the results of the survey with the team to inform their research and to help justify the importance of funding this project. There are only 7 questions.

PLEASE NOTE: This is anonymous. There is no way that Autism Ontario can find out who is responding.

To participate, please use this link: http://www.surveymonkey.com/s.aspx?sm=p74Kk3paIi91s0lWu9s0Fg_3d_3d





Participants needed for a research study:
"Sensory Processing Patterns in the Workplace in Adults with Autism Spectrum Disorders"
If you are 18 years old and over:
with Autism, Asperger syndrome, PDD or PDD-NOS
are currently working, have worked in the past or have not yet worked

I want to learn about your experiences!
•Find out your sensory patterns by taking a questionnaire! Questionnaire completion will take 20-30 minutes.
•You may be asked to continue with the second part of the study to talk about your work experiences.
•Participate from your own home.

If interested, please contact:
Tiziana Bontempo
MSc Rehabilitation Sciences candidate
Queen's University
Kingston, Ontario
Email: 6tb3@queensu.ca
Tel.: 613-583-7743


Promising Research Study on Diet
http://www.physorg.com/news137342504.html

Defining a Rights Based Framework/Définir un cadre fondé sur les droits
Advancing Inclusion of Students with Disabilities 2008 NATIONAL FORUM/Pour l'avancement de l'intégration des élèves ayant des incapacités Forum national 2008
www.inclusiveeducation.ca/cashraforum/cashraintro.html

Claire Danes circles autism biopic: Mick Jackson to direct film based on Temple Grandin's life
http://www.hollywoodreporter.com/hr/content_display/news/e3ide19bac7b91209a2ed01f3822b847c9f



From Child Care Resources, Sudbury
Subject: Trillium Grant for Reach for the Rainbow!
Hello everyone,
As supporters of Reach for the Rainbow, I would like to thank you for your continuing commitment to our charity and our mission to provide integrated opportunities for children and youth with disabilities in Ontario.
I have attached a press release which I hope you may disseminate or feature on your website content, which announces our receipt of an Ontario Trillium Grant for three years in the amount of $295,100. This will allow us to establish Reach for the Rainbow advisories in the cities of Hamilton, Sudbury and London. Please have your staff contact me if you require any further information, or you would like to issue a statement in conjunction with our office. We will be in touch for the first steps in the process in the of fall 2008.
Thank you again for your tremendous help and support, and we look forward to working with you in making sure that all children feel like they belong!
Best
Jennifer

Jennifer Jeynes
Manager of Communications
416.503.0088 ext 147

Reach for the Rainbow
20 Torlake Crescent, Toronto, ON M8Z 1B3
F: 416.503.0485
www.reachfortherainbow.ca

seeing beyond disabilities since 1983

Reach for the Rainbow: Your continued commitment will go a long way in supporting our mission statement of providing integrated recreational opportunities to children and young adults with physical and developmental disabilities, offering much needed respite to the families and care givers of these beautiful individuals and increasing public awareness in seeing beyond disabilities. With your help these young people will be able to participate in typical summer camp programs, (both overnight and daily camping experiences) March Breaks and year 'round activities with the aid of a 1:1 counselor. Reach for the Rainbow's expansion over the years has been truly amazing and very positive, as the agency went from serving 20 individuals in 1987 to 909 in 2008. www.reachfortherainbow.ca

The Ontario Trillium Foundation has awarded a significant grant of $295,100 over 3 years for the development of advisory committees in the cities of Sudbury, London and Hamilton for Reach for the Rainbow’s integrated recreational programs for children and youth with disabilities in Ontario.
"This grant will support the charity’s mission of providing inclusive opportunities within the communities we serve by utilizing the resources available and our valuable partners” said Founder and Executive Director Donna Trella. “We are thrilled to be working with so many camps, agencies and organizations committed to making sure that all children feel like they belong.”
The three year strategic plan will implement a concentrated outreach campaign directly beneficial to these areas, while utilizing the strength of community resources – the most influential and with the most impact being the voices of those who serve to champion the cause of integration.
The securing of a Community Investment Manager will centralize the initiative and provide the needed human resources to drive this initiative forward effectively and will allow participants with physical and developmental disabilities, youth in the community, families, community key stakeholders, partner residential and day camps, agencies, disability services and advocacy groups the opportunity for a collaborative forum and increased integration awareness and training.
The Ontario Trillium Foundation, an agency of the Ministry of Culture, receives annually $100 million of government funding generated through Ontario's charity casino initiative. The Foundation allocates grants to eligible charitable and not-for-profit organizations in the arts, culture, sports, recreation, environment and social service sectors.
As a core support and essential service to over 900 families in over 64 partner camps across the province of Ontario, Reach for the Rainbow realizes that integrated opportunities allow for a great quality of life and the ability to effectively engage within a given community. Through 1:1 support workers, accessible bussing, adaptive equipment and programs, Reach for the Rainbow chooses to create a world in which everyone belongs. www.reachfortherainbow.ca.
For further information on Reach for the Rainbow, please contact:
Jennifer Jeynes
Manager of Communications
(416) 503-0088 ext 147
jjeynes@reachfortherainbow.ca


From a listmate
CKWS-TV - CKWSTV

Google alert
http://www.caledonenterprise.com/sports/article/54869


Tee off for autistic children
Wednesday August 20 2008


The Surface Mount Technology Association (SMTA), is holding their annual Charity Golf Tournament in Caledon in support of Shining Through Centre for Children with Autism.
The event includes an 18-hole scramble format round of golf, power carts, full-course dinner, hole contests, prizes and much more.
The 12th annual Surface Mount Technology Association Charity Golf Tournament will be held on Thursday, August 28 also at Glen Eagle Golf. Please note the golfing registration deadline for both tournaments is one week prior.
To register or for more information, please call Shining Through Centre at (905) 851-7955.
The Shining Through Centre was founded in 2001 to provide an intensive and comprehensive educational programme for children with Autism. Located in a historic home in Woodbridge, Shining Through Centre is regarded as one of the premier sites in Ontario for support for children with Autism.
The programme is based on scientifically-validated procedures of Applied Behavioural Analysis (ABA), offered through one-on-one instruction for each child. For more information on the Shining Through Centre, visit www.shiningthrough.ca.


Nancy’s List


From The Star, although not autism specific, I shared some info on Bill 77, and advocacy surrouding this bill in a recent mailing:


Disability groups say Liberal bill is seriously flawed
August 16, 2008
Helen Henderson

T hey will not go away. They will not play dead.
A coalition of community groups is among a growing faction determined to keep Queen's Park honest in its bid to change laws affecting some 300,000 Ontarians diagnosed with developmental disabilities.
There is no argument from anyone that the current Developmental Services Act is long overdue for change. The question is whether Bill 77, which went through second reading in May, will provide families with the dignity and choice Social Services Minister Madeleine Meilleur has been touting in its defence.
Already, public consultations on Bill 77 have been fast-tracked over four consecutive days, one each in Ottawa, Timmins, London and Toronto. Participants were allowed only 15 minutes total to present their views and answer questions from members of the Liberal-dominated Standing Committee on Social Policy.
By Aug. 8, it was all over. But the shouting may have just begun.
Concerns abound that the bill will simply be rammed through, without any significant amendments, in the same high-handed fashion as the recent and controversial revamping of the Ontario Human Rights Commission.
"A lot of us were hoping this bill would be the answer," says Janis Jaffe-White, co-ordinator of the Toronto Family Network, one of 14 members of the coalition, which calls itself simply the Provincial Adhoc Working Group on Bill 77. "But the reality is that it has serious flaws."
The very makeup of the working group is one indication of the depth and breadth of concern. In a commendable display of unity, it includes relatively large agencies, such as Autism Ontario and Community Living Ontario, as well as small family networks from Durham, Toronto and Windsor Essex.
"There is such a sense of solidarity," says Judith McGill, head of Families for a Secure Future and the one chosen to make the group's formal presentation to the standing committee. "No one is going away or lying down and playing dead on this."
The coalition's doubts are shared by many, according to transcripts of the public hearings. Among the main concerns:
As set out in the bill, the application centres for services have an inherent conflict of interest, with no checks and balances on potential abuse of power.
The centres are responsible for assessing needs, allocating resources and prioritizing applications. They manage funding and services and also refer individuals to particular services.
Among other things, the coalition notes, that makes it too easy to pressure people to fill available service vacancies rather than help them choose what suits them.
Any disputes regarding the application centres are to be settled by internal review. There is no mechanism for independent appeals of any decisions, including those that would terminate funding.
The bill mandates application centres to prioritize on the basis of those most in need. This takes it for granted that there will never be enough funding to meet needs, thereby entrenching waiting lists in legislation.
The coalition argues that support to facilitate needs should be offered "as a basic right to each and every individual ... once they are deemed eligible."
The bill accepts the idea of funding going directly to families so they can help individuals choose the services and supports that best suit them. But it does not offer any help to plan and facilitate ways of building solid circles of care or plans of action. "Without that, direct funding will be a failure," Jaffe-White says.
Bill 77 does not guarantee families enough direct funding to pay support workers wages comparable to what they would earn at an agency.
Liberal members of the standing committee told participants in this month's consultations that some of their concerns will be addressed when regulations are formulated to put the bill into action after it is passed.
The setting of regulations is not a public process. But the "fine print is where peoples' lives will be most affected," says McGill. On that note you can bet the battle has just begun to get legislation that is transparently fair, accountable and equitable.
For more information on the working group, email jlmcgill@rogers.com.

------------------

From OACRS:

Ask Lindsay Moir:
Different expectations for exceptional children
Friday, August 15, 2008
Question:
This week I will deal with two diametrically opposed sides of the same issue: when parents and school view the same child based on very different expectations. In these two cases the students are very similiar, in each case the student is an elementary student recently diagnosed with high functioning autism.
Both boys are verbal, but have social deficits. Both boys are able to do academic work at or close to grade level. However the parents receive two very different responses from their schools.
#1
"Help! My son has recently been diagnosed with Autism- although it is at the high functioning end of the spectrum. For the last 3 years his report cards have indicated that there were NO ACADEMIC CONCERNS.
He has some small problems in reading comprehension in long passages and when the work is chunked into manageable pieces, he has no problem in that area at all. We agreed to testing due to his lack of interest in socializing with his peers and his "obsession" with certain topics (at the expense of completing other work.)
Both the school and the family were surprised with the diagnosis, but upon reflection it makes sense. As soon as the diagnosis was shared with the school his ENTIRE program was suddenly MODIFIED.
Academic expectations were suddenly dropped several grades! Despite discussions about this concern, his "draft IEP" which we just received lists all subjects as "modified."
He has never had academic issues, yet the resource teacher and the board consultant have decided to modify the program to work he did independently 18 months to two years ago. We are told that this is standard practice for kids with autism. HELP!
#2
Our son was recently diagnosed with autism, but he is "VERBAL" and can chat away with you. If you listen to the what he actually says, much of it is nonsense. He is pleasant and fairly social. He can decode single words and recognizes and says a large number of words, but his comprehension of what he reads is very very low!
His teacher keeps telling us that he needs no modification in programming because he talks!
She seems to think that everything is OK and that we are "overly concerned" parents. When we look at the work that he is being exposed to, it is 3-4 years above his functioning level.
She never does any objective testing and the EA "scribes" answers that our son is incapable of giving! The school has a totally false expectation of our son. They refuse to call in the Autism School Support Team because there is "no problem." HELP!
Answer:
Getting everyone on "the same page" is one of the biggest challenges for parents.
Exceptional children often have all sorts of service providers — community agencies, health professionals, educators, advocacy services. When we hold meetings we usually need a very BIG room!
Each of these groups has differing levels of knowledge and understanding around the impact of the exceptionality. Some of the players deal with that particular exceptionality (and only that exceptionality) on a daily basis.
Others, deal with a wide range of exceptionalities in their daily work. Some have intensive training, others a single awareness workshop and still others have only second hand knowledge of the exceptionality.
In particular, Autism is a "spectrum" disorder and students can exhibit an incredibly wide range of impacts. If a person has not grasped this basic fact, they will likely try to draw on previous experience with an autistic student, and try to apply this knowledge inappropriately to another autistic student! It is my hunch that this is what is happening here?
Sometimes, medical reports assume that everyone already has the same knowledge base and that it is not necessary to spell out this level of detail — in one of my favourite books (The Four Agreements,) a basic rule for life is NEVER ASSUME!
Many parents fail to share the small details and assume that teachers and consultants "know everything," NEVER ASSUME!
Many professionals assume that everyone else has the same knowledge as they possess, NEVER ASSUME!
It is really important that parents, professionals, and educators invest time and energy to develop a shared understanding of the impact of any exceptionality BEFORE we begin any kind of planning or programming. It is clear to me that this step was skipped in both of the above situations.
Planning and programs based on incorrect assumptions are a waste of time and energy and usually cause a lot of stress and frustration for everyone involved. One ancient TV commercial for Fram oil filters, showed a mechanic standing beside a smoking engine — he holds up an oil filter and says "You can pay me now, or pay me later...."
I believe we can and must INVEST time and energy to reach a shared understanding which will be the basis of an effective program and a good working relationship OR we can skip this step and hope for the best.
Too often, I see poor programs or spoiled relationships because we failed to "get everyone on board."
YOU CAN PAY ME NOW, OR PAY ME LATER and the later bill comes with a much higher "price."
I believe that the parents should develop a written statement which clearly spells out the key points about the student and their program. Walk this statement (one page) by your health and community professionas and ask them to help you "improve."
Once you can clearly (and accurately) communicate these key points, then share them with the educators who can use this to develop appropriate programming. One parent that I know had each person sign off that they were in agreement with the "above planning principles"... copies were sent to everyone.
Each planning meeting began with a review of these "Guiding Principles."
It did not matter if the meeting was about the child's IEP, or about Respite Care — the same Guiding Principles were used to develop a shared understanding.
One of the families used this strategy and now have an appropriate IEP in place for September.
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at ask.questions@yahoo.ca He will answer as many questions as possible.

--------------

From the London Free Press:

All-day hoopsters shooting for cure
By KRISTA SEGGEWISS

It may only be hoops for a day, but Nick Slade and others playing in a 24-hour charity game this weekend hope for a cure.
The 28-year-old London resident organized the event to benefit Autism Ontario and more than 3,000 Londoners living with the disorder.
"I thought basketball would be a great sport to play because most people can pick it up and all you need is a ball," Slade said.
Inspired by his five-year-old autistic niece, Slade decided this year to run a fundraiser.
He recruited 30 friends to find sponsors and play one long game of four-on-four basketball. Participants will play for 30 minutes and then break for two hours. Tents will be set up so participants can rest between shifts. Rented lights will illuminate the court after dark.
"One in 150 individuals are diagnosed with autism and the rate is going up," said fundraising manager Marti Lussier of London's Autism Ontario. "It's very costly to support."
Money from the event will support London individuals and families mainly through summer camp subsidies, Lussier said.
Slade's goal is to raise $10,000. He's raised $1,250 personally and won't know the final tally until after the weekend.
With one year left in Fanshawe College's child and youth worker program, Slade hopes to become a teacher.
"I will probably work with autistic children in the future," he said.
---
IF YOU GO
What: Hoops for a Day, Hope for a Cure, a 24-hour basketball game.
When: 12 p.m. today until 12 p.m. tomorrow
Where: outdoor court at Robarts School for the Deaf, 1090 Highbury Ave.
To Donate: Call Autism Ontario, London Chapter at 519- 433-3390


-------------------------



From a Toronto based Pop Culture News Website:

(andPOP) - Claire Danes is in negotiations to play autistic scientist Temple Grandin in an upcoming HBO biopic.

Grandin, also a leading speaker on autism, is an expert in the field of humane livestock handling and has written influential essays on animal welfare and designing humane slaughterhouses.

She was previously the subject of the BBC documentary "The Woman Who Thinks Like a Cow," as well as the Errol Morris documentary "First Person : Stairway to Heaven."

Danes would play Grandin from her high school years, when she was teased by other kids for her disorder, to her post-academic period, which saw her holding degrees from several universities.

Mick Jackson ("The Bodyguard") is set to direct the biopic, for which an October start date in Austin is being eyed.

Danes, known for such films as "Romeo and Juliet " and "Shopgirl," will next be seen in Richard Linklater's "Me and Orson Welles." The drama is scheduled to premiere at the Toronto International Film Festival in September.


*********8

http://lfpress.ca/newsstand/News/Local/2008/08/16/6471241-sun.html
All-day hoopsters shooting for cure
By KRISTA SEGGEWISS
It may only be hoops for a day, but Nick Slade and others playing in a 24-hour charity game this weekend hope for a cure.
The 28-year-old London resident organized the event to benefit Autism Ontario and more than 3,000 Londoners living with the disorder.
"I thought basketball would be a great sport to play because most people can pick it up and all you need is a ball," Slade said.
Inspired by his five-year-old autistic niece, Slade decided this year to run a fundraiser.
He recruited 30 friends to find sponsors and play one long game of four-on-four basketball. Participants will play for 30 minutes and then break for two hours. Tents will be set up so participants can rest between shifts. Rented lights will illuminate the court after dark.
"One in 150 individuals are diagnosed with autism and the rate is going up," said fundraising manager Marti Lussier of London's Autism Ontario. "It's very costly to support."
Money from the event will support London individuals and families mainly through summer camp subsidies, Lussier said.
Slade's goal is to raise $10,000. He's raised $1,250 personally and won't know the final tally until after the weekend.
With one year left in Fanshawe College's child and youth worker program, Slade hopes to become a teacher.
"I will probably work with autistic children in the future," he said.
---
IF YOU GO
What: Hoops for a Day, Hope for a Cure, a 24-hour basketball game.
When: 12 p.m. today until 12 p.m. tomorrow
Where: outdoor court at Robarts School for the Deaf, 1090 Highbury Ave.
To Donate: Call Autism Ontario, London Chapter at 519- 433-3390

One of Nancy’s older emails, when I was in hospital…
Sorry..


I hope I am not too late for giving everyone this final notice on the Dr. Carbone Workshop in Oakville, the flyer is attached to the mailing:


Hi Nancy,

Can you please send the brochure (attached) information to your groups as a final reminder of Dr. Carbone's workshop in Oakville next week. There are a few spots left and the deadline is noon tomorrow (August 15th).

-------------------

From Walrus Magazine, reference to Dr. Tony Attwood at last years Geneva Centre Conference, a great read. Thank to listmates for sharing this one:


The Anti-Socialite
http://www.walrusmagazine.com/articles/2008.09-family-the-antisocialite-denis-seguin-how-to-tell-if-a-child-has-aspergers


--------------------------

A listmate shared this story, I have not had an opportunity to read it myself;


http://www.cnn.com/2008/HEALTH/conditions/08/12/autism.college.ap/index.html



-------------------------


From the Toronto Sun, an opportunity for some respite for our GTA listies:

August 15, 2008
Hard-pressed parents get a break
By AMY CHUNG, SUN MEDIA


Stacey Ryan and husband Harold Fortis talk with daughter Sadler Fortis at Safehaven yesterday. The family was given a mini-vacation by Tourism Toronto. (VERONICA HENRI/Sun Media)
Stacey Ryan can't remember the last time she and her family went on a vacation.
But as of 1:30 p.m. yesterday, Ryan, her husband, Harold Fortis, and their kids were swept in a limo for a free weekend getaway from Toronto Tourism, who are offering a deal to give families with special-needs children a chance to recharge.
"I'm really excited ... this will allow us to explore the city ways we couldn't before," said Ryan, at a press conference yesterday at Safehaven, a care centre for children with disabilities.
Ryan's 11-year-old daughter, Sadler Fortis, has cerebral palsy, and going anywhere requires a lot of pre-planning.
"Even if we go to a restaurant, we have to make sure the place is accessible, if there are stairs, the spacing between tables, a place to changer her diaper ... lots of things to think about," Ryan said.
Deb Matthews, minister of children and youth services, described parents like Harold and Stacey as "heroes."
"I was elected in 2003 and before that, I spent a year knocking on doors talking to people ... that was the best education I ever had," Matthews said.
CHALLENGES
"I just didn't know how many families were taking care of kids at home and facing enormous challenges.
"These are the people who put the rest of their lives on hold so they could be the very best parents they can be. I don't think we pay enough tribute to the parent heroes," said Matthews.
Tourism Toronto spokesman Andrew Weir said that the department has a social responsibility budget that allows them to work in projects like this.
"We wanted to do something to help kids ... we thought this was better than giving out a cheque," said Weir.
Two families are selected every week and have a choice between three packages: couple, family and single-parent.
Ryan and her family went into the limo and started their weekend getaway with free meals at downtown restaurants, a two-night stay at the Delta Chelsea and tickets to yesterday's Buffalo Bills game. The rest of the weekend includes free passes to the ROM, CN Tower and the Bata Shoe Museum.
"The program should be running as long as the sponsorship from these companies keep coming in," said Weir.
Families can go to www.respiteservices.com or contact their social worker to get nominated.

-------------


From the Suburban Newspaper in Quebec:

The 'autism epidemic'
By Marlene Eisner, The Suburban


Lea Schizas (left) and Litsa Kamateros hope the book they are writing will help parents with children diagnosed with autism.

Lea Schizas and Litsa Kamateros have a long journey ahead of them.

It’s not one that involves a plane, train or automobile.

Instead, they will travel a road filled with bumps and learning curves to fulfill a special mission the two West Island women started eight months ago.

Schizas and Kamateros are determined to educate as many people as possible about autism, a baffling communication disorder that is estimated to affect one in 200 people in Canada. They plan to spread the word through a book they are writing called Autism Epidemic: Shaking the System.

Between them Schizas, 50, and Kamateros, 43, have eight children ranging in age from nine to 30. None have autism. But it was while working as a volunteer at her children’s elementary school (formerly Sunnydale, now Springdale) that Kamateros noticed the children who had autism were treated differently by the other children, and even sometimes by adults.

That’s when she had the idea to write a children’s picture book entitled Welcome to my Autistic World. After gathering her notes and ideas, she realized she needed the help of a professional editor. In an odd twist of events, she hooked up with Schizas, a former hair stylist who knew Kamateros’s husband, Paul.

“I was cutting her husband’s hair — he’s also our accountant — and he started telling me that his wife had a fascination to write a children’s picture book,” says Schizas, who quit cutting hair a couple of years ago to become a full-time writer and editor.

“Eventually, she wanted to talk with me after Paul told her several times that I am a writer and an editor.”

The two met for the first time last December and it was while Schizas was working on Kamateros’s children’s book that she had the idea to collaborate with Kamateros on a bigger project.

“Litsa had a bunch of research. That’s what caught my attention; the number of kids who are being diagnosed with autism; that really blew my mind. I asked, ‘why’?

From there, the ideas starting flowing and the goals of the book established: to create awareness of autism; to examine the need for earlier assessment; to be a roadmap for parents with autistic children so they know what to do; to outline the importance of early intervention and increased funding and support; and to examine the many controversies surrounding the causes of autism and similar disorders such as Asperger’s syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).

A lot has been accomplished in the last eight months, but there is still a long way to go.

Kamateros and Schizas acknowledge what’s ahead, and say they are fully committed to seeing the project find its way to a publisher. As the main researcher, Kamateros puts in four to five hours a day reading and researching on the topic of autism. She then shares that information with Schizas, who will write the book.

“I always pass on what I read to Lea,” says Kamateros. ”We debate. We can’t have a one-sided book … we want different angles and perspectives.”

Although far from being published, the book’s title has already caused a bit of controversy on the website’s blog. Some people have complained the title is insulting. For example, one woman wrote: “… calling autism and autistic people an epidemic, is like calling my boy … a stigma and I do not feel this for him. I also disagree with your title ‘autism epidemic’ and I am sure that if you were a parent of an autistic child [you] would feel the same.”

Schizas and Kamateros say they understand the sensitivities of parents, but decided to use the phrase because it came up so many times during their research. “You need something catchy to catch their attention to read what it’s about,” says Schizas.

“The important thing is the content,” says Kamateros, adding that it’s unlikely the title will change.

In October the authors plan to send a complete proposal to an agent Schizas knows in New York who will help them find a publisher, with the goal of finishing the book by June, 2009.

Until then, they are looking for participants to fill out a questionnaire available on their website. The information will be compiled and included in the book, along with excerpts from personal stories submitted by parents and people with autism.

To contribute to the book, or to find out more about the project, please go to www.theautismepidemic.com or email autismepidemic@yahoo.com.

2008-08-13 12:14:24

--------------------
REPEAT
There was a great day in Sudbury for Jonathan Howard as he brought his Run the Dream through.
From the Sudbury Star Newspaper:

'Give autistic kids a chance'
Event marks arrival of cross-country trek to battle disorder
Posted By ANGELA SCAPPPATURA, THE SUDBURY STAR

Standing behind a wooden podium outside Tom Davies Square, 10-year-old Matteo Raso strained to pull the stationary
microphone down to his mouth so he could address the crowd gathered for an event on autism.
His mother and younger sister sit attentively listening to the articulate boy's story about how it feels to struggle with
autism.
Raso was diagnosed with autism at the age of six. He wasn't able to speak until he was four.
The diagnosis does not bother Raso, who, in a self-assured voice, said he is proud of who he is.
Despite being bullied in school for his "constant questions," Raso sees himself as a miniature Einstein because of his
curiosity and love of science.
"Maybe I could be the next Einstein," he said. "Give autistic kids a chance."
Raso spoke to the crowd as part of an event signifying the arrival of members from Run for the Dream, a cross-
Canada trek meant to raise awareness and funds for autism.
Mississauga athlete Jonathan Howard marked the halfway point of his run for the disorder and aims to raise $2.5
million by the end of his journey.
"I chose autism because it is on the rise," he told the crowd. "A few years ago, the rates were one in 1,000 children
would have autism, now it is one in 165."
Howard was joined by friend Terry Robinson, a two-time Paraolympian who suffers from cerebral palsy. Robinson is
participating in the Ottawa-to-Winnipeg leg of the run.
Discussion at the event turned to the struggle of social agency Child Care Resources.


--------------
(THIS EVENT GOT CANCELLED WITHOUT NOTICE)
The next major City with events planned is Sault Ste Marie next Saturday, August 23rd.


Event Autism Awareness – Family Fun Day
Description Family fun day – Bouncy House, hot dogs, refreshments, etc
Location Bellevue Park – Sault Ste. Marie
Start Time 11:00 a.m.
End Time 3:00 p.m.
Local Contact info Lorena Burgan lorena_burgan@hotmail.com

-------------

This from the Soo News:

Run The Dream!
SooNews Wire for SooNews.ca
Thursday, August 14, 2008, 12:56PM


Jonathan Howard, who's
running across Canada in
support of Autism arrives in
Sault Ste Marie on August
21st, and is joined by Terry
Robinson, Canadian
Paralympian Champion

TORONTO - Run the Dream is a
solo run across Canada by 24
year old Jonathan Howard of
Mississauga ON, in support of
Autism Spectrum Disorder
(ASD) awareness. Terry
Robinson, two-time Canadian Paralympian who uses a wheelchair for
mobility, has joined Run the Dream and will travel alongside of
Jonathan from Ottawa, ON to Winnipeg, MB.
Together, Jonathan and Terry will be arriving in Sault Ste Marie on
Thursday, August 21st. A welcoming event will take place on Friday,
August 22nd in the Soo as well as a Family Day Event on Saturday,
August 23rd. More detilas to following in
--------------------
And a few stories from the events from Run the Dream from the past two weeks as Jonathan headed to Northern Ontario:

From Orillia Today newspaper:

Jonathan Howard chose to run across Canada for autism, not because of any personal connection, but to increase awareness of the disorder.
Running a marathon distance of 42 kilometres nearly everyday since March 25, when he left St. John's, Newfoundland, for Victoria, B.C., hasn't slowed the 25-year-old Mississauga man down.
During his Parry Sound stop at noon on Wednesday he was relaxed and seemed ready to go, despite running from near MacTier to Oastler Park that morning.
Mr. Howard plans to end his Terry Fox-like Run The Dream journey on Dec. 31 in Vancouver, at which point he hopes to have raised $2.5 million to support charities that work with autistic children and their families.
He said he wants to get people talking about the fact that, 10 years ago, one in 10,000 kids born was affected by autism, but today it's one in 165, "and people don't know why".
"My dream was to run across Canada," he said, adding that as a Canadian he was raised to look after others. "I wanted to do it for something related to children and chose autism because I believe it needed a larger profile."
Mr. Howard's friend Terry Robinson, a two-time Canadian Paralympian who has cerebral palsy, which affects body movement and muscle co-ordination, is joining him for the three-month Ontario portion of the run. He plans to leave his friend to continue on alone in Winnipeg.
"I just believe anybody with any form of disability should be able to live their life to the fullest," said Mr. Robinson.
Using an electric wheelchair, Mr. Robinson described himself as a good pace setter for Mr. Howard.
"It's a great opportunity to be with John and help him share his dream," he said.
On Wednesday, Mr. Howard and Mr. Robinson met with Parry Sound-Muskoka MPP Norm Miller, Community Living executive director Jo-Anne Demick, and Maureen Porter, whose toddler was diagnosed with autism two years ago.
"We all need heroes and today we are welcoming two true champions for the cause (of autism)," said Ms Demick. "As a community we can do more, each in our own simple contribution, whether learning more or getting involved."
To follow Mr. Howard's progress across Canada, click the link provided
--------------
The Bradford Times Newspaper printed a letter I sent out following the event here on the 2nd, in this weeks newspaper. It included a nice photo of the politicians, Terry, Jonathan and myself.



http://www.bradfordtimes.ca/ArticleDisplay.aspx?e=1156984

DEAR EDITOR,
It was a thrill to join with other families affected by Autism, Aug. 2 at Bradford’s Lions Park, as we welcomed Jonathan Howard on his marathon across Canada to raise awareness of Autism. On that day, Jonathan ran from Newmarket through Bradford and Innisfil, up to Barrie.
Jonathan’s marathon started in Newfoundland back in March. He passed the 3,500 km. mark just 2 weeks ago, and will complete his marathon on December 31, when he touches the Pacific Ocean in British Columbia.
Joining us for a charity BBQ were dozens of families affected by autism, along with the Hon. Peter Van Loan, MP; MPP Julia Munro, Mayor Doug White and Deputy Mayor Dennis Roughley. The Town of Bradford West Gwillimbury presented both Jonathan Howard and Paralympian Terry Robinson with certificates of appreciation. Families and dignitaries posed for pictures with these amazing young men.
Luke Burrows, a 12 year old boy with Autism, gave a very moving speech on how much Jonathan’s Run the Dream Marathon means to him. Luke didn’t even speak until he was 5 years old! He brought many of us to tears of pride for his achievements.
Many families stayed and enjoyed a family swim together in the Lions Pool.
I would like to thank our sponsors for the event – Innisfil Sobeys, Bradford M & M Meat Shops, Bradford’s One Red Chair Coffeehouse, and the BWG Recreation and Facilities and Parks Departments.
Signed,Nancy Morrison, Bradford.
-------------

And from a US source, a few listmates shared this article with me, as it holds great interest for all of us:


http://www.huffingtonpost.com/david-kirby/revolutionary-news-from-m_b_118307.html
David Kirby

"Revolutionary" News From Medicine: 1 in 200 People Carry Mitochondrial Disease Mutation
Posted August 11, 2008 | 08:10 PM (EST)
________________________________________


BOTH MITOCHONDRIAL "DISEASE" AND "DYSFUNCTION" APPEAR TO BE MORE COMMON THAN PREVIOUSLY THOUGHT -- IMPLICATIONS FOR AUTISM, OTHER DISORDERS ARE "EARTH SHATTERING."

Note: To put a human face on this subject, I URGE you to visit this site.
ALSO - A roundup of this controversy, written by Hannah Poling's great aunt, was published in the Atlanta Journal Constitution.
In February, when the US government conceded that vaccines had caused an autism-inducing reaction in little Hannah Poling, most experts declared that her underlying condition, a mitochondrial disorder, was exceedingly rare - so rare, in fact, that it had no bearing on other autism cases.
But on Monday, the United Mitochondrial Disease Foundation announced a "landmark research finding" showing that at least one in 200 healthy humans "harbors a pathogenic mitochondrial mutation that potentially causes disease." The finding was published in the current issue of the American Journal of Human Genetics.
"This is earth shattering news," UMDF Executive Director and CEO Charles A. Mohan, Jr. told me. "Some of my colleagues are calling it 'revolutionary.' We have shown that mitochondrial disease is not rare."
Mitochondria are the little powerhouses found within most cells, and which produce most of the body's energy. Mitochondria are key for proper neurotransmission and, for obvious reasons, are highly concentrated in cells of the brain and central nervous system.
Up until now, estimates of mitochondrial disease rates have held steady at about 1-in-4000 people. But this study shows that 20 times that number have genetic mutations that could cause mitochondrial disease.
"What this says to me is that more than 1-in-4,000 people have mitochondrial disease," Mohan said. "And it tells me that 1-in-200 could develop some type of mitochondria-related disease over the course of their lifetime, depending in part on environmental triggers."
Mitochondrial disorders are found at "the core of many well known diseases and chronic illnesses, such as Alzheimer's disease, Parkinson's disease and autism spectrum disorders," a statement from the UMDF said today.
Humans have two types of DNA: nuclear, and mitochondrial. The study looked at 10 mutations in mitochondrial DNA that are known to cause disease, and identified them in the cord blood of 1 in 200 newborn children.
.
The study looked exclusively at classic mitochondrial "disease." In the classic form, inherited mutations of mitochondrial DNA are passed down through the mother, causing a wide variety of pathologies, including seizures, digestive problems, paralysis, blindness, heart disease, neurodevelopmental disorders and other problems.
The classic form is often quite severe, and sometimes fatal. But it is not rare.
Which brings us to Hannah Poling: She does not have "classic," maternally inherited mitochondrial disease.
Hannah does share the same single-point mutation in mitochondrial DNA as her mother, Terry. But this mutation is apparently benign (Terry Poling is just fine), is not described in the medical literature, and is not associated with any pathology at all.
Instead, Hannah seems to have had a much milder, even asymptomatic form of mitochondrial "dysfunction" - one that led to reduced cellular energy, but no obvious signs of severe mitochondrial "disease."
In April, I reported that researchers in Baltimore were studying 30 children at one autism clinic who all had nearly identical markers for mild mitochondrial dysfunction. One of them was Hannah Poling.
All 30 children were developing normally until they encountered some type of immunological stress and began showing signs of regressive autism soon afterwards.
In 28 cases, the doctors said, typical childhood fevers caused the stress, while in the other two cases, including Hannah, vaccines appeared to be the exacerbating factor.
The doctors - who spoke on a CDC conference call that included executives from the health insurance industry -- reported that mitochondrial dysfunction was found in autism "in numbers that make it not a rare occurrence."
Some estimates currently put the rate of mitochondrial dysfunction in ASD at 7-20%, while rates among regressive autism cases could climb much higher than that.
This milder form of mitochondrial disorder, the doctors said, was probably caused by a mutation found in nuclear (as opposed to mitochondrial) DNA, and inherited through the father -- rather than through the mother, as in classic mitochondrial disease.
Shockingly, the nuclear DNA mutations that bring risk of dysfunction could be as common as 1-in-400 to 1-in-50 people - though no one knows how many people have developed actual mitochondrial disorders because of it.
Even so, we can now assume that classic mitochondrial "disease" desrcibed in this study (via mutations in maternal mitochondrial DNA) and mild mitochondrial "dysfunction" found in Hannah and others (via mutations in paternal nuclear DNA) are both associated with increased risk for autism.
And we can also now assume that neither form of mitochondrial disorder is rare. Moreover, whether the low cellular energy originates in mitochonrial DNA or nuclear DNA mutations, either way it could confer increased risk for autism.
That would mean a significant number of children between the ages of 1 and 2 who are walking around right now, potentially vulnerable to autistic regression triggered by some acute immune stressor - whether vaccine related or not.
"Mitochondrial dysfunction represents a major unexplored area of human biology of vital importance to human health," the UMDF statement said, noting that it also has been implicated in autoimmune diseases such as multiple sclerosis and lupus.
"While it cannot yet be said that mitochondrial dysfunction causes these problems, it is clear that mitochondria are involved because their function is measurably disturbed," the statement said.
This new study suggests that, "mitochondrial dysfunction is a major underlying risk factor for human disease," said Dr. Douglas C. Wallace, professor of molecular medicine and director of the Center for Molecular and Mitochondrial Medicine and Genetics at the University of California-Irvine.
He should know. Dr. Wallace is one of the world's leading mitochondria researchers, and a member of the UMDF's Scientific and Medical Advisory Board. He also has a 23-year-old son with autism.
In April, Dr. Wallace told the Vaccine Safety Working Group of HHS's National Vaccine Advisory Committee that over-vaccination of people with mitochondrial disorders was a deep concern, especially in light of Hannah Poling, who got nine vaccines in one well-baby visit.
"We have always advocated spreading the immunizations out as much as possible because every time you vaccinate, you are creating a challenge for the system," Dr. Wallace testified. "And if a child has an impaired system, that could in fact trigger further clinical problems."
I take that to mean that children with impaired mitochondria might also have impaired immune systems. And children with impaired immune systems might not be able to handle, say, nine vaccines given at once.
The CDC says that multiple simultaneous vaccines are safe, "for children with normal immune systems," but makes no mention of the risk for everyone else.
But, as Dr. Wallace put it, "We do not know what is safe. We do not know what is not safe. We do not know the actual risk of a person with light mitochondrial disease has and being challenged either by vaccination or by a severe infection."
"Is there a relationship between mitochondrial disease and vaccination and mitochondrial disease and autism?" Dr. Wallace asked the HHS panel. "Would a vaccination or infection initiate an incipient mitochondrial disease, as has been suggested?"
Only major investments in scientific research will answer these questions, which have become particularly pressing now that we know that mitochondrial disorders are anything but "rare."
"This will help us educate key members of Congress to motivate and encourage NIH to appropriate more funds to focus specifically on mitochondrial dysfunction and disease," Mohan told me. "We would like to see this result in a better understanding of the links between energy metabolism and what we call the "sexy diseases."
I likewise hope our nation's researchers will jump on this particular scientific train before it leaves the station.
It would appear that far more lives are at risk for far more diseases (well beyond autism) than we ever imagined.

Google Alert
http://www.parrysound.com/press/1218639725/
SEE LINK FOR PHOTO
Runner crossing Canada for autism
PRINT | DISCUSS | E-MAIL
Statistics
Click Photo to Enlarge
Jonathan Howard, back, right, is running across Canada for autism. His friend Terry Robinson, front, is joining him for the Ontario portion of the run. The duo made a stop in Parry Sound last week and met up with Parry Sound-Muskoka MPP Norm Miller.
Sarah Bissonette/North Star
Advertisement
North Star, Sports, Wednesday, August 13, 2008
by Sarah Bissonette | more by this writer
PARRY SOUND - Jonathan Howard chose to run across Canada for autism, not because of any personal connection, but to increase awareness of the disorder.
Running a marathon distance of 42 kilometres nearly everyday since March 25, when he left St. John's, Newfoundland, for Victoria, B.C., hasn't slowed the 25-year-old Mississauga man down. During his Parry Sound stop at noon on Wednesday he was relaxed and seemed ready to go, despite running from near MacTier to Oastler Park that morning.
Mr. Howard plans to end his Terry Fox-like Run The Dream journey on Dec. 31 in Vancouver, at which point he hopes to have raised $2.5 million to support charities that work with autistic children and their families.
He said he wants to get people talking about the fact that 10 years ago one in 10,000 kids born was affected by autism, but today it's one in 165, "and people don't know why".
"My dream was to run across Canada," he said, adding that as a Canadian he was raised to look after others. "I wanted to do it for something related to children and chose autism because I believe it needed a larger profile."
Mr. Howard's friend Terry Robinson, a two-time Canadian Paralympian who has cerebral palsy, which affects body movement and muscle co-ordination, is joining him for the three-month Ontario portion of the run. He plans to leave his friend to continue on alone in Winnipeg.
"I just believe anybody with any form of disability should be able to live their life to the fullest," said Mr. Robinson.
Using an electric wheelchair, Mr. Robinson described himself as a good pace setter for Mr. Howard.
"It's a great opportunity to be with John and help him share his dream," he said.
On Wednesday, Mr. Howard and Mr. Robinson met with Parry Sound-Muskoka MPP Norm Miller, Community Living executive director Jo-Anne Demick, and Maureen Porter, whose toddler was diagnosed with autism two years ago.
"We all need heroes and today we are welcoming two true champions for the cause (of autism)," said Ms Demick. "As a community we can do more, each in our own simple contribution, whether learning more or getting involved."
To follow Mr. Howard's progress across Canada, go to runthedream.ca.


From Nancy’s Mailer
In regards to the Camp Inclusion Worker funding shortfall, and that this funding has now been closed, I have had a response from my e-mail to Minister Matthews, and a few others have shared their responses with me that came from Autism Ontario. Please, take a few moments to write to Minister Deb Matthews about how you feel about this issue, and cc MPP Andrea Horwath, NDP Critic for Children and Youth Services, and MPP Julia Munro, Conservative Critic for Children and Youth Services. Send in your invoices to Autism Ontario, let them know how much of this funding was needed but not provided. Even if this doesn't provide you a reimbursement for your money spent this year, it will help in ensuring there is enough money there for next year. It's the squeeky wheel, and we need to shout loud on this inequity of funding - anyone who plans to send their child to camp after the first two weeks of summer are excluded, because we had to pay first and then apply for a refund - we could not file claims before our child attended camp.


Deb Matthews Queens Park address: mcsmin.mcys@ontario.ca.

Julia Munro: julia.munro@pc.ola.org

Andrea Horwath: ahorwath-qp@ndp.on.ca


-------------------------

From the Toronto Sun from late last week, and made it to the Schafer Report in the US too:

This made the Schafer Autism report int he States:


Ontario Government Failing Autistic Children
Autism Intervention Program Not Accepting New Patients Due To $1.8 M Deficit

By Jonathan Jenkins, Sun Media, Canada.
tinyurl.com/6mnava

It took two years for Reece Cooper to get into an IBI program for his autism and in just two weeks it made a massive improvement.
Now his mother worries provincial funding is running dry for her five-year-old son.
"Reece started the program and right away I noticed a difference," Melanie Cooper said yesterday.
"He actually looked at me and said I love you. That had never happened before."
The Niagara Falls mom of three started sending Reece for six hours of IBI (intensive behavioural intervention) a day through Bethesda Community Services of Niagara in April after two long years waiting to get in.
Now, Bethesda and the Hamilton- Region Autism Intervention Program says their program has a $1.8 million deficit and can't accept any new patients from its waiting list.
And while her son is now 10 weeks into his IBI treatment, Cooper is concerned about what the funding shortfall could mean for him.
"Its very, very important and I'm worried that with the cutbacks that they already have, that they're going to take it away," Cooper said. "It's significant gains. He actually makes eye contact about 40 per cent of the time now. Before he didn't even know I existed."
Melissa Macdonald, a spokesman for the Hamilton Health Sciences Centre, said the Hamilton Region Autism Intervention Program is getting more money from the government -increasing from $6.95 million in 2006-07 to $8.8 million in 2008- 09.
At the same time though, the province has ordered the program to treat almost twice as many patients - going up from 62 to 116.
"The funding has increased but not proportionally to the number of children we're mandated to treat," she said.
Stacy Hayward waited patiently while her son Branden moved up to number three on the IBI wait list, only to be told a few weeks ago he couldn't start this September as planned.
"Basically I'm here to make people understand that these children need our help," Hayward said.
"The government -no ifs, ands or buts -is failing these children."
Research shows IBI gets the best results if it's started before the child's fifth birthday, which for Branden comes in December.
"It's a ticking time bomb," the mom of three from Welland said.
The cost of private IBI treatment runs from $40,000 to $60,000 a year but it's something her family is now exploring -even if it means mortgaging their home, she said.
"At this point for our family we can't afford to not have Branden in the program," she said.
"Every child with autism deserves that chance."
The governing Liberals promised to increase funding for autism programs and they have -tripling the amount of money going to IBI from $44 million to $150 million.
That has allowed 1,400 children to get the IBI treatment. But at the same time, the wait list has grown to 1,100, NDP MPP Peter Kormos said.
"One of the province's great failures has been to not recognize autism as a treatable disorder or condition, such that treatment should be available under OHIP," Kormos said.
"Then there wouldn't be a lottery for the kids who need it."

----------------------


From the Hamilton Spectator Newspaper:


Deficit hurts autism program

Denise Davy
The Hamilton Spectator

(Aug 8, 2008)
The region's only program for autistic children has been forced to shut its doors to new clients because it faces a deficit of almost $2 million.
The Hamilton Niagara Regional Early Autism Initiative, one of nine programs in the province, has informed parents on the wait list that it can no longer take new clients.
A spokesperson for McMaster Children's Hospital, the lead agency for the program, said demand has outpaced funding and the program faces a $1.8 million deficit.
Although funding increased from $7 million in 2006 to almost $9 million this year from the Ministry of Children and Youth Services, the number of children enrolled in the program grew from 62 to 116.
The local program is one of eight across the province that have reported deficits. Only the Toronto initiative isn't facing a shortfall.
Child Care Resources in northern Ontario was hit especially hard and expects a deficit of $2.5 million by the end of the year.
Minister of Children and Youth Services Deb Matthews appointed a team to investigate Child Care Resources. Ministry spokesperson Kevin Spafford said findings from the investigation may affect what the ministry does to help all agencies.
Locally, McMaster is investigating ways to allow more clients to be accepted.
"We aren't accepting new admissions to the program until an appropriate model of care is developed to address the funding challenges," said Melissa MacDonald, adding that the program is not shutting down.
Children in the Intensive Behavioural Intervention program (IBI) receive 20 to 40 hours of therapy a week, usually one-on-one with a specialized therapist. Parents typically report that their child's symptoms are greatly reduced as a result.
A Hamilton mother said she was shocked to receive a letter from Hamilton Health Sciences last week stating her five-year-old son would not be starting in the fall.
She said she's waited two years so far.
"Our hopes were really up that he would start in the fall," said Angela, who did not want her last name used. "He's a pretty high-functioning child and the sooner he gets in, the better."
Angela said the letter stated that the hospital is working with the ministry to find a solution.
MacDonald said program directors are exploring other models, including the Toronto model in which the children work in group settings rather than one-on-one.
Ministry funding for IBI therapy across the province increased from $44 million in 2003 to $150 million this year, Spafford said.
ddavy@thespec.com
905-526-3317
IBI in Hamilton
* Children on the list for Intensive Behavioural Intervention (IBI) therapy through the Hamilton program typically wait 18 to 24 months for treatment.
* The average age of children receiving IBI therapy is five.

---------------

From the Welland Tribune Newspaper;

Government failing autistic children
AUTISM INTERVENTION PROGRAM NOT ACCEPTING NEW PATIENTS DUE TO $1.8 M DEFICIT
Posted By JONATHAN JENKINS, SUN MEDIA
Posted 4 days ago
It took two years for Reece Cooper to get into an IBI program for his autism and in just two weeks it made a massive improvement.
Now his mother worries provincial funding is running dry for her five-year-old son.
"Reece started the program and right away I noticed a difference," Melanie Cooper said yesterday.
"He actually looked at me and said I love you. That had never happened before."
The Niagara Falls mom of three started sending Reece for six hours of IBI (intensive behavioural intervention) a day through Bethesda Community Services of Niagara in April after two long years waiting to get in.
Now, Bethesda and the Hamilton- Region Autism Intervention Program says their program has a $1.8 million deficit and can't accept any new patients from its waiting list.
And while her son is now 10 weeks into his IBI treatment, Cooper is concerned about what the funding shortfall could mean for him.
"Its very, very important and I'm worried that with the cutbacks that they already have, that they're going to take it away," Cooper said. "It's significant gains. He actually makes eye contact about 40 per cent of the time now. Before he didn't even know I existed."
Melissa Macdonald, a spokesman for the Hamilton Health Sciences Centre, said the Hamilton Region Autism Intervention Program is getting more money from the government -increasing from $6.95 million in 2006-07 to $8.8 million in 2008- 09.
At the same time though, the province has ordered the program to treat almost twice as many patients - going up from 62 to 116.
"The funding has increased but not proportionally to the number of children we're mandated to treat," she said.

Stacy Hayward waited patiently while her son Branden moved up to number three on the IBI wait list, only to be told a few weeks ago he couldn't start this September as planned.
"Basically I'm here to make people understand that these children need our help," Hayward said.
"The government -no ifs, ands or buts -is failing these children."
Research shows IBI gets the best results if it's started before the child's fifth birthday, which for Branden comes in December.
"It's a ticking time bomb," the mom of three from Welland said.
The cost of private IBI treatment runs from $40,000 to $60,000 a year but it's something her family is now exploring -even if it means mortgaging their home, she said.
"At this point for our family we can't afford to not have Branden in the program," she said.
"Every child with autism deserves that chance."
The governing Liberals promised to increase funding for autism programs and they have -tripling the amount of money going to IBI from $44 million to $150 million.
That has allowed 1,400 children to get the IBI treatment. But at the same time, the wait list has grown to 1,100, NDP MPP Peter Kormos said.
"One of the province's great failures has been to not recognize autism as a treatable disorder or condition, such that treatment should be available under OHIP," Kormos said.
"Then there wouldn't be a lottery for the kids who need it."

--------------

From the London Free Press Commentary Section:

In Brief
By FREE PRESS NEWS SERVICES
KIDS TURNED AWAY
HAMILTON -- The Hamilton area's only program for autistic children has been forced to turn away new clients because it faces a deficit of almost $2 million. The Hamilton Niagara Regional Early Autism Initiative, one of nine programs in the province, has informed parents on the waiting list that it can no longer take new clients. Although funding from the Ministry of Children and Youth Services has increased by almost $2 million since 2006, the number of children enrolled in the program has grown from 62 to 116.

------------------

Parent Central:


http://parentcentra l.ca/App_ Themes/ParentCen tral/standard/ images/logoPrint .g
if

Autistic children face therapy delay


http://parentcentra l.ca/App_ Themes/ParentCen tral/standard/ images/btnPrintA rt
icle.gif

Rob Ferguson

August 08, 2008

As the mother of an autistic son, Stacy Hayward of Welland was looking
forward to 4-year-old Branden starting intensive treatment in September.

Then Hayward got a letter late last month from a local treatment centre
saying the boy's intensive behavioural intervention (IBI) therapy will be
delayed because of a cash crunch.

She came to Queen's Park yesterday looking for an explanation.

"The government is failing our children," said the mother of three, noting
the IBI treatments that cost about $50,000 a year "are known to really,
really help these children."

The postponements - happening in several parts of Ontario this summer -
prove the need for covering IBI therapy under provincial health insurance,
the New Democrats say.

"Treatment should be available under OHIP... so treatment won't be a lottery
for kids who need it," New Democrat MPP Peter Kormos (Welland) told a news
conference yesterday as an energetic Branden roamed the media studio.

"It's a roll of the dice."

http://parentcentra l.ca/parent/ article/474404

The Ministry of Children and Youth Services acknowledged some social
agencies giving IBI treatment through provincial funding - including
Hamilton-Niagara and Northern Ontario - are facing deficits, but officials
at Queen's Park aren't sure why.

"We don't have a full picture yet," said Kevin Spafford, a spokesperson for
Children and Youth Services Minister Deb Matthews, who has ordered a report
on the issue.

"We're just looking to understand why even though we've increased funding
they're still having cost issues," Spafford said.

He noted the Liberals have increased autism funding to $150 million this
year from $44 million when they were elected in 2003.

About 1,400 children now get IBI therapy annually, up from 500 five years
ago. Another 1,100 remain on the waiting list.

At least one agency says the problem stems from provincial funding not
keeping pace with the increasing number of children getting the expensive
IBI treatments.

In the Hamilton-Niagara area that serves the Hayward family in Welland, the
number of children getting IBI therapy has almost doubled in two years, to
116 this year from 62.

"The revenue for IBI also increased, but not proportionately, " said Melissa
Macdonald, spokesperson for the Hamilton Health Sciences Centre, noting the
funding has risen at a much slower rate of about 28 per cent in the same
period to $8.89 million this year.

That's why the Hamilton centre - which runs the Hamilton-Niagara regional
autism intervention program now facing a $1.8 million deficit - has decided
"different models of care" will be needed to treat its allotted 116 children
this year.

"That means kids in this catchment area will wait longer," Macdonald said in
an email interview.

For Hayward, that means digging deeper into her own pockets to pay for IBI
treatment on a private basis.

"If we have to mortgage our house ... that's the position we're in," she
said. "We're gonna do whatever we have to do."

IBI treatment has been widely hailed for making communications breakthroughs
with autistic children. Therapists reinforce desired behaviours and
discourage inappropriate ones in sessions that can take up to 20 hours a
week or more.



---------------------

And this from canada.com:



Ontario's autism treatment faces huge cash crunch

Jordana Huber
Canwest News Service


Thursday, August 07, 2008


CREDIT: Nic Hume/Vancouver Sun
A file photo of Aron and David Collyer in Victoria, BC. Aron, who is autistic, is going through an Applied Behaviour Analysis program.

TORONTO - The number of autistic children receiving treatment in Ontario is nearly equal to the number still languishing on waiting lists, NDP critic Peter Kormos charged Thursday as he accused the province of failing to live up to its promises to fund treatment for autistic children.
Autistic children who have waited years to reach the top of waiting lists are being denied Intensive Behavioural Intervention (IBI) because of funding shortfalls, Kormos said noting the crucial treatment is most effective when introduced at an early age.
"Families lived with hope but are now living with despair," Kormos said. "There is a 50 per cent chance of getting treatment. It is a roll of the dice."
A letter sent last month to parents of autistic children waiting for IBI in the Hamilton-Niagara Regional Autism Intervention Program warned new entries were being delayed because "service needs have exceeded the current level of funding."
Children already in the program, the letter said, may have changes to their clinical team or schedules. Kormos said other agencies across the province are also restricting the number of children receiving IBI therapy because they are facing deficits.
Stacy Hayward's four-year-old son Branden reached number three on a waiting list and was scheduled to begin 25 hours of IBI per week in September before she was told the program was delaying new entries.
Though she can't afford private treatment which can cost anywhere from $40,000 to $60,000 a year, she said she can't afford to wait for the province to fund her son's therapy.
"It is a ticking time bomb," Hayward said. "The stats show IBI treatment is most effective when started before the age of five. Branden is going to be five in December."
Hayward joined Kormos and parent Melanie Cooper at Queen's Park Thursday to press the province for more funding.
Kormos said 1,400 children currently receive IBI treatment while 1,100 are still waiting.
After spending two years on a wait list, Cooper's son five-year-old Reece started IBI 10 weeks ago.
"He actually looked at me and said 'I love you,'" Cooper said choking back tears. "That has never happened before so it is very important and I am worried with the cutbacks they already have they're going to take it away."
The province has acknowledged some agencies providing services for autistic children are facing cash crunches and earlier this month the Ministry of Children and Youth Services launched a review into the operations of one not-for-profit in northern Ontario facing a $2.5 million funding deficit this year.
Kevin Spafford, a spokesman for Minister of Children and Youth Services Deb Matthews, said the review is due back in the coming days and the results will help "inform" the ministry as it works with other agencies facing similar predicaments.
"We understand they are facing some financial pressure, that they are forecasting some deficits for this year and we are absolutely committed to working with them to ensure kids with autism get the service that they need," Spafford said.
© Canwest News Service 2008

------------------



City TV:

http://www.citynews .ca/news/ news_25528. aspx

Thursday August 7, 2008

CityNews.ca Staff

Stacey Hayward claims the province has betrayed her son and thousands of
other children by pulling the funding of a specialized treatment for autism.

Hayward's son Branden was supposed to start his intensive behavioural
intervention sessions on Monday but the family's hopes were dashed when they
received a letter from the government last week informing them the boy
wouldn't be eligible for the program due to cutbacks.

"When we opened up the letter, to our dismay it actually stated that any new
entries to the I.B.I. program were now being put on hold due to lack of
funding," the frustrated mother explained.

Branden was third on the list to receive the one-on-one treatment. (For more
information on I.B.I. treatment, follow the link at the bottom of the story)

NDP MPP Peter Kormos joined Hayward and Melanie Cooper, whose five-year-old
son Reese currently receives the therapy, at a press conference at Queen's
Park Thursday.

"These children need our help. The government, no if, ands or buts, the
government's failing these children," he said.

Critics claim the government isn't fulfilling its promise to provide funding
for I.B.I. treatments, which can cost families tens of thousands of dollars
a year. Now agencies across Ontario may have to turn children away.

Hayward says she'll be forced to turn to private therapy which could cost
between $40,000 and $60,000 a year.

"We can't afford not to have him in a program," she said. "So the bills and
that we'll have to worry about later."

Cooper's son started the treatments in April and she says she's already
noticed a significant improvement in her child.

"I'm worried with the cutbacks that they already have that they're going to
take [the treatment] away," she said.

About 1,400 children currently receive I.B.I. treatment, but another 1,100
are still waiting.


-----------------



Toronto Star:


Rob Ferguson
Toronto Star

August 08, 2008
As the mother of an autistic son, Stacy Hayward of Welland was looking forward to 4-year-old Branden starting intensive treatment in September.
Then Hayward got a letter late last month from a local treatment centre saying the boy's intensive behavioural intervention (IBI) therapy will be delayed because of a cash crunch.
She came to Queen's Park yesterday looking for an explanation.
"The government is failing our children," said the mother of three, noting the IBI treatments that cost about $50,000 a year "are known to really, really help these children."
The postponements – happening in several parts of Ontario this summer – prove the need for covering IBI therapy under provincial health insurance, the New Democrats say.
"Treatment should be available under OHIP... so treatment won't be a lottery for kids who need it," New Democrat MPP Peter Kormos ( Welland ) told a news conference yesterday as an energetic Branden roamed the media studio.
"It's a roll of the dice."
The Ministry of Children and Youth Services acknowledged some social agencies giving IBI treatment through provincial funding – including Hamilton-Niagara and Northern Ontario – are facing deficits, but officials at Queen's Park aren't sure why.
"We don't have a full picture yet," said Kevin Spafford, a spokesperson for Children and Youth Services Minister Deb Matthews, who has ordered a report on the issue.
"We're just looking to understand why even though we've increased funding they're still having cost issues," Spafford said.
He noted the Liberals have increased autism funding to $150 million this year from $44 million when they were elected in 2003.
About 1,400 children now get IBI therapy annually, up from 500 five years ago. Another 1,100 remain on the waiting list.
At least one agency says the problem stems from provincial funding not keeping pace with the increasing number of children getting the expensive IBI treatments.
In the Hamilton-Niagara area that serves the Hayward family in Welland , the number of children getting IBI therapy has almost doubled in two years, to 116 this year from 62.
"The revenue for IBI also increased, but not proportionately," said Melissa Macdonald, spokesperson for the Hamilton Health Sciences Centre, noting the funding has risen at a much slower rate of about 28 per cent in the same period to $8.89 million this year.
That's why the Hamilton centre – which runs the Hamilton-Niagara regional autism intervention program now facing a $1.8 million deficit – has decided "different models of care" will be needed to treat its allotted 116 children this year.
"That means kids in this catchment area will wait longer," Macdonald said in an email interview.
For Hayward , that means digging deeper into her own pockets to pay for IBI treatment on a private basis.
"If we have to mortgage our house ... that's the position we're in," she said. "We're gonna do whatever we have to do."
IBI treatment has been widely hailed for making communications breakthroughs with autistic children. Therapists reinforce desired behaviours and discourage inappropriate ones in sessions that can take up to 20 hours a week or more.
Queen's Park Bureau


--------------


This is being shared a bit late.... you only have a few hours to get this in on time, the info was pulled off another list:



From:
To:
Sent: Monday, August 11, 2008 12:25 AM
Subject: Fw: OAARSN Special: Bill 77, Services for Persons with Developmental Disabilities Act, 2008

Bill 77, Services for Persons with Developmental Disabilities Act, 2008

In mid-May 2008, the Minister of Community and Social Services introduced new legislation covering services and funding the Ontario Government may provide for persons with a developmental disability. The last full act on the subject was passed in 1974. One reason for the legislation is to wind up the Government's direct management of "Schedule 1" facilities which are due to close within the next year. The Government has said that the new act will shape what happens in the next quarter-century.

We all have an opportunity to write with our comments and recommendations to the Standing Committee on Social Policy of the Ontario Legislature by the deadline: 5:00 p.m. on Tuesday, August 12, 2008. This bulletin contains links to the text of the bill and some comments.

Please address your letter to:
Katch Koch, Clerk/Greffier
Standing Committee on Social Policy
Re: Bill 77, Services for Persons with Developmental Disabilities Act, 2008
Ontario Legislature
Room 1405, Whitney Block/Bureau 1405, édifice Whitney
Queen's Park, Toronto ON M7A 1A2
Facsimile (416) 325-3505

Thank you for taking time (during the summer vacation and all) to think about and act on this vital issue,

Gerald & Elizabeth Bloomfield

--------------------


AFASE at school

Presents
Advocating For Appropriate Special Education

Saturday, September 6 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
Special Education.

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

Ajax Public Library
55 Harwood Avenue S.
Ajax, Ontario
L1S 2H8

SPACE IS LIMITED - REGISTER EARLY TO RESERVE YOUR SPOT

*Early bird rate: $85.00
*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

*Fee includes refreshments and handouts for each presentation

------------------------


The Ottawa Citizen:


By SUSAN SHERRING
susan.sherring@ sunmedia. ca>

The Ottawa Sun

Ian Reisch, 15, and his mother Brenda at their home yesterday. Ian is
autistic and is becoming too violent and unpredictable for his family to
handle on their own. Inset, Ian's caregiver Jacob Weare displays the bruises
and broken nose he received when Ian attacked him. (BLAIR GABLE/Sun Media)

Traces of blood are still splattered from one end to the other of Brenda
Reisch's home, the result of a violent and unprovoked attack.

The attacker? Her precious 15-year-old son Ian.

The victim? Her son's caregiver, 26-year-old Jacob Weare.

Ian Reisch has autism and in recent months his behaviour has been more
aggressive, his outbursts have become more uncontrollable, more violent.

"I can't describe the horror of looking at what my child had done, the
amount of blood, it was all over the walls, all over the carpet, from one
end of the house to the other," she told the Sun.

Photographic evidence details the extent of the attack, a broken nose,
bright red marks and purple bruises left behind after Ian lunged onto
Weare's back.
<
http://www.canoe. ca/CanoeGlobalna v/invisible. gif>


-------------------


The Windsor Star Newspaper:



Windsor author explains autism to kids

Sharon Hill
The Windsor Star

Thursday, August 07, 2008


CREDIT: Pawel Dwulit, The Windsor Star
Windsor author Debbie Lockrey-Wessel poses for a portrait at The Windsor Star studio. Lockrey-Wessel has written a children's book on autism and has another book coming out in 2009.


CREDIT: Handout photo
Debbie Lockrey-Wessel has written a book to help students understand and accept autism called A new friend at school. Her brother John Lockrey of Sarnia (shown in picture) has autism and Debbie named the main character in her book John.

Debbie Lockrey-Wessel wrote the book she wished she could have read as a child.
It could have helped her and others better understand her younger brother John Lockrey, who has autism.
"I know there was times when he ate his lunch by himself in the library. He didn't have a lot of friends. He didn't have kids his age interact with him as much and I just wish that he had."
Now the Windsor woman hopes her first children's book, A new friend at school, will help students today understand autism. With her brother's permission, the main character is John.
"I thought that this book would be a way to help other students, other young students understand what autism is about and not be afraid to interact with other children with autism."
The book explains autism is a developmental disorder, not a disease you can catch. It talks about how some children with autism may not make eye contact or talk but can communicate by pointing to pictures.
In Ontario, an estimated 70,000 people have what falls under a broad category of autism spectrum disorder.
While some people with autism don't develop language skills and can have repeated movements, such as hand flapping, others, such as those with Asperger's disorder, show no significant delay in language and have average to above average intelligence.
Lockrey-Wessel, a national science communication advisor for Agriculture and Agri-Food Canada, shares her interest in autism with her husband Dwayne Wessel. He's an educational consultant for students with autism in Michigan and appeared on ABC TV's Extreme Makeover as a consultant a few years ago.
Lockrey-Wessel said she got the idea for six books on autism while flying to Calgary a few years ago. Her next book is due out in 2009.
"I was on a plane ride one day and ideas for six different books on autism flew out onto a piece of paper."
Lockrey-Wessel has sold 1,800 books so far mostly to schools across Canada. One school in British Columbia had already re-ordered more books since their first copy was so worn.
She said the book can be used to teach children about a classmate that has autism and it carries a general message of being nice to other children. "There's ways of cheering on our friends regardless of their disabilities."
Lockrey-Wessel hopes to also write children's novels.
Her brother John, now 31, liked the book. She said he has an amazing memory, keeps up on politics, lives in Sarnia with is parents and has two part-time jobs.
Debbie Lockrey-Wessel will be signing and selling her children's book on autism at Chapters at Devonshire Mall Aug. 28 from 5:30 p.m. to 9 p.m. The book sells for $9.95 and is available at www.essentialautism.com.

© The Windsor Star 2008



--------------------

From the Vancouver Province Newspaper:


Picture thinking in pictures
"There are things I can do that 'normal' people can't do," says Temple Grandin

Elaine O'Connor
The Province

Sunday, August 10, 2008

Temple Grandin was a child who couldn't stand to be held. She didn't say a word until she was three. Her only sounds were hums of satisfaction or screams of frustration. She bit teachers, threw tantrums, rocked back and forth for hours. She was trapped in autism.
But two weeks ago, this same woman, now Dr. Temple Grandin, was in B.C. lecturing parents and caregivers at Delta's Seaquam Theatre about the challenges children with autism face and the treatments to help them succeed as adults.
Today, Grandin, now 60, is a world-renowned expert, not only in autism (she's written five books on the subject), but in livestock handling. She has a PhD in Animal Science from the University of Illinois, has written 300 articles, holds patents for inventions (half of all U.S. beef cattle are slaughtered in humane facilities she designed) and is a professor of animal science at Colorado State University -- proof that adults with some kinds of autism can lead productive, inspiring lives. But there are few positive examples of, or discussions about, adults with autism: the focus remains on children. What is life with autism like for adults? What do adults with autism need to thrive? And are they getting it?
To start, they need role models. Grandin fits the bill.
"I've had parents come up and say I gave them insight that their child could really have a future," she says.
She attributes her progress to her parents. In 1950, when doctors labelled her autistic (she'd be diagnosed with Asperger's today), her parents were told to put her in an institution. Instead, they enrolled her in private school and therapy.
Grandin embraces her autism and the traits it's given her, like her ability to think in pictures, even though it's made relationships difficult.
"It has created the detailed way that I think. There are things I can do that 'normal' people can't do when it comes to designing things."
For example, with a cattle restraint as a model she designed a hug machine to offer autistics who cringe at human touch a way to enjoy the experience. It's now used treating autistic children.
It's for these reasons she writes in Thinking In Pictures: My Life with Autism, "If I could snap my fingers and become non-autistic, I would not because then I wouldn't be me."
Grandin is proof that with therapy an adult can live fully and independently with mild to moderate autism. But few acknowledge it.
Oliver Sacks, the psychologist and writer who detailed Grandin's case, writes that society has blinders on.
"The word 'autism' still conveys a fixed and dreadful meaning to most people -- they visualize a child mute, rocking, screaming, inaccessible, cut off from human contact. And we almost always speak of autistic children, never of autistic adults, as if such children never grew up or were somehow mysteriously spirited . . . out of society."
But they do grow up. And in B.C. they face obstacles as adults.
v
Autism spectrum disorder (ASD) is a neurological disorder that effects communication and social interaction. It covers a range of developmental disabilities: autistics can be low-functioning (lower IQs, aversion to contact), high-functioning (high IQs, few social skills) or in between. Common types are autism disorder, pervasive development disorder and Asperger's.
With 3,000 new cases each year, the number of Canadians with autism appears to be growing. The Autism Society of Canada estimates one out of every 165 children has ASD. The rate of diagnosis has risen 150 per cent in children under five. Autism remains four times more common in boys than in girls. Currently, about 190,000 Canadians are living with autism. There is no definitive cause or cure.
In B.C., an estimated 10,000 residents are likely living with diagnosed cases of autism, according to Michael Lewis, board president of the Autism Society of B.C. In 2007 alone there were 3,700 students currently in B.C. schools with ASD.
Autism is the most common neurological disorder. In B.C., it's also been the most contentious.
B.C. parents have taken the government to court repeatedly to get funding for early intervention.
In 2002, Families for Early Autism Treatment won a case to fund treatments (costing $40,000 to $60,000 a year). But in 2004, the government challenged the decision in the Supreme Court of Canada and won.
B.C. now funds autistic children under six to the tune of $20,000 a year; under $6,000 per year for children six to 19. At age 19, it continues assistance to those with IQs below 70. Autistic adults with higher IQs can leave the system still unable to live alone.
In 2006, the mother of an autistic son with an IQ of 79 went to court and won a ruling that B.C. couldn't discriminate based on IQ, which was upheld in the B.C. Court of Appeal in 2007.
But last month, Premier Gordon Campbell and Minister Tom Christensen signed an order making an IQ under 70 a criteria for services. It was termed an interim measure. Parents are worried it means a permanent end to assistance and some have started up a petition online.
"Adults with autism are falling though the cracks. They are losing the supports they need," says Lewis, vice-president of the Autism Society of Canada.
"Parents just want an assurance that their child is going to be able to live with dignity across their life span," says the father of a 14-year-old son with autism.
"Without those supports, God knows what is going to happen to some of these people."
Pat Mirenda, a University of B.C. professor of educational and counselling psychology and special education, says the transition from school to adulthood is stressful enough without the fear they'll have no safety net.
"Transition from school to adulthood is a huge change. It means loss of social network, loss of something to do all day that's reasonably meaningful, loss of routine, and routine's really important to people with autism," Mirenda says.
"Because of lack of services and programs, often what it means for them is sitting at home watching Oprah eight hours a day after they have spent all these years in early intervention. Or they get into some day program that is just wandering around a mall with other people with developmental disabilities who also don't have services."
Parents say the government needs a long-term plan for autistic adults.
"Society hasn't thought much, yet, about adults with autism," said a Vancouver Island parent of a teenage autistic son.
"Ten years ago, the incidence was one in 560. The Center for Disease Control published a study that said of children born in 2000, one in 150 is on the spectrum. We need to start thinking about adults with autism, because there are going to be a great number of them."
v
Vancouver's Eleanor Gregory has been thinking about her autistic son Michael's future for years.
"You wonder what his life is going to be like as he gets older," says the school board trustee. "He's a very kind, caring person and at times I worry, 'Is he lonely? What's going to happen when I'm not around?"'
Michael, 23, was diagnosed with autism at age four and Asperger's at seven. A voracious reader with a sharp memory and love of animals, he lacked social skills and was bullied. He began therapy early and had classroom aides, but bounced between schools trying to fit in.
He graduated from Fraser Academy at 18 and completed courses at Langara and online. He's in a government-funded job program, doing data entry for the Canadian Cancer Society and meeting other autistics in a group called Club Connects.
Michael's happy with his progress and comfortable with himself and with his autism, which he sees as a benefit in some ways.
"I'm not a neurotypical . . . I think autistics often aren't as dependent on other people's approval. Autistics are more intrapersonal, whereas a lot of non-autistics are more interpersonal," Michael says.
But meeting social norms makes being an autistic adult tough.
"I have had difficulty with social interactions in my life. Socially, I've found I've had a lot less problems after I graduated. In college, one has more say in what course they take . . . fast-paced, high-stress jobs, jobs that require a lot of social interaction are harder for autistics."
Yet the biggest hurdle is fighting other people's prejudice, he says.
"I still think that there is a lot of bigotry towards the disabled today. [There are] stereotypes that autistics can't empathize with other people, that they can't form emotional attachments, that they are selfish, that autism is a 'disease,' which they need to be 'cured.' I personally don't like the words 'disorder,' 'illness' or 'disability.'"
Michael and his mom prefer to focus on positives. They've both seen Grandin speak, and believe, like her, he can have a good career.
"People like that are such wonderful role models. You feel there is hope for the future," Gregory says.
But now they worry that with his over-70 IQ he may lose his program.
"There is so little out there," Gregory says, "that when you do find something, the thought that it could be gone is heartbreaking."
Grandin sees lack of support for adults with autism as a wasted opportunity to nurture talent.
"Einstein would probably be labelled Asperger's today. If we didn't have some of these genetics, we wouldn't have great scientists and musicians and artists," she says.
"People like this have added so much to life."
eoconnor@theprovince.com
- - -
The Autism Advantage
For many, autism isn't a "diagnosis," but an advantage. Autism and genius go hand in hand, they argue. It's claimed that Jane Austen, Albert Einstein, Nikola Tesla, Glenn Gould and Thomas Edison had traits interpreted as autistic.
Blog entries on websites such as Joy of Autism and Autism Diva share these insights. Other similar sites are AspiesforFreedom, where "Aspergers and autism are not negative, and are not always a disability," and AspieSocial, where they meet "people who are fabulous just like you."
This community even has an unflattering name for non-autistics: neurotypicals. An online spoof, the "Institute for the Study of the Neurologically Typical," puts it this way: "Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority and obsession with conformity."
© The Vancouver Province 2008

------------------------


This was in the York Region newspapers:

Letters to the Editor
August 09, 2008 11:50 PM
I would like to thank two gentlemen for being so very kind to me at a gas station at Mulock Drive and Bayview Avenue in Newmarket last month.

I put $10.03 of gas in my van. With the cost of gas these days, I am just putting enough in until I need more.

I was experiencing problems with my debit card and my Mastercard and neither would work when swiping.

I wanted to call my husband, who works close by in Newmarket, but I do not own a cellphone.

A gentleman beside me pulled out his phone and dialed my husband’s number, but was unable to get a connection.

I was so embarrassed and flustered, I didn’t think of using a pay phone.

Another gentleman put $10 down on the counter to pay for my debit.

I tried to make arrangements to reimburse him, but he wouldn’t accept the offer and went out the door.

The attendant refused my three cents to cover the total, but reluctantly accepted when I insisted.

I will make a donation to the Autism Society in the name of “two unknown good Samaritansâ€.

I pick the Autism Society because my grand-nephew is autistic.

Joyce Wonch
Keswick

---------------------

This is from the Brantford Espositor Newspaper:

'Days' spotlights autism through Carver family
Posted By PAULETTE COHN, © ZAP2IT
Posted 1 day ago

According to a 2007 report issued by the Centers for Disease Control and Prevention, one in every 150 American children is diagnosed with autism. It is a growing number and a topic that hits very close to home for "Days of our Lives" head writer Dena Higley, who has raised an autistic child, now 19.
That said, Higley didn't decide to tell the story until encouraged to do so by NBC. She explains, "I would never have pushed this story uninvited simply because as a head writer you try not to use (the show) as a dumping block for your own agendas."
After talks with Autism Speaks, Higley concluded that introducing an autistic child, dealing with the grief and deciding what to do for the child was
enough, so she was not going to get into causality.
Higley selected the Carvers -Abe and Lexie (James Reynolds, Renee Jones) -as the perfect candidates because they're both professionals, and, as she points out, "They're both can-do, take charge, problem-solving people who are now being given a problem they can't solve."
Another decision that Higley made was for Theo Carver to be higher functioning. "We had
already established that this character had some language," she says, "so we couldn't go back and have him not talk anymore."
As for Jones' and Reynolds' reactions, he comments, "Renee and I have spoken about this at great length, and doing a story that means so much to so many people is something that we're really honored to do." Dear Paulette: I would like to know if the girl who plays Ava in "Days of our Lives" is related to Sarah Brown, who plays Claudia in "General Hospital." The face looks the same to me, and the hair could be changed with wigs. -I. K., Johnstown, N. Y.
Dear Reader: The one thing that Tamara Braun (Ava on "Days") and Sarah Brown have in common is that they have both played the same role on "General Hospital." Braun previously starred as Carly on "GH" from 2001 to 2005, and Sarah Brown played the same role from 1996 to 2001. They are not related.
Send questions of general interest to Paulette Cohn, Soap Talk, Zap2it, 40 Media Drive, Queensbury, NY 12804, or e-mail to soaptalk@tribune.com. Only questions selected for this column will be answered. Personal replies cannot be sent.

----------------------

This from the US, but I share it here, it's the only reference I have found to this research. For those that question if the diet truly works or not, this research should be able to tell us if this is or would be an effective thing to do. Thus far the only evidence of improvement through diet has been anecdotal:


Researchers Study Diet And Autism

www.physorg.com/news137342504.html

Researchers at The University of Texas Health Science Center at Houston have embarked on one of the first double-blind, clinical studies to determine whether gluten and dairy products play a role in autistic behavior as parents have anecdotally claimed.
The pilot study is one of seven current studies on autism in the Department of Pediatrics and the Department of Psychiatry and Behavioral Sciences at The University of Texas Medical School at Houston.
"There's a lot of misinformation, so that's why this study is so important," said Fernando Navarro, M.D., assistant professor of pediatrics at the medical school and lead investigator of the study. "Hundreds and hundreds of parents think this works but we need serious evidence."
Autism is a complex neurobehavioral disorder linked to early abnormalities of brain development. According to the National Institute of Neurological Disorders and Stroke, it affects up to six of every 1,000 children and is characterized by impaired social interaction, problems with verbal and nonverbal communication and unusual, repetitive or severely limited activities and interests. Researchers have discovered that there are differences in the central nervous system's anatomy and function in those diagnosed with autism, but the cause of the disorder is unknown. Experts theorize it may be a combination of genetics and environment.
"A lot of children with autism have gastrointestinal problems such as constipation and diarrhea. Whether these problems are related to brain development is open to question," said Katherine Loveland, Ph.D., co-investigator and professor of psychiatry and behavioral sciences, pediatrics and biomedical sciences at the health science center. "There are neurotransmitters and neuroreceptors in the gut that correspond with those in the brain. There are some scientific reasons to think that some kids may benefit from this diet."
For the double-blind study, funded in its initial phase by supplemental funds granted by the Department of Pediatrics, researchers will enroll 38 autistic children ages 3 to 9. They will look at the influence of gluten and milk proteins in the intestinal function. Gluten is a protein in wheat; casein and whey are proteins in milk. Casomorphin, a peptide in milk; and gliadomorphin, a peptide in gluten, are thought to be related to changes in behavior in these children. Children will be taken off gluten and dairy products before the four-week study and then half will be given gluten/milk powder and half will be given a placebo powder.
Researchers will study intestinal permeability (leaky gut) through urine collection and behavior through psychometric testing.




END OF MAILING

3 comments:

sllimoandbuses said...

Thanks for providing information about NewYork picnic spot. We provide luxury transportation in New York tri-state area and JFK airport limousine.

http://www.sllimoandbuses.com

Thanks

Prince said...

Hi Dear
Really,If you enjoy in the party then You feel very happy. you take the food in the party and use the different type material use.....................
Face Painting Calgary

shashank said...

Here is a link to more information about the genetics of Mental Retardation/Developmental Delay that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: http://www.accessdna.com/condition/Mental_Retardation/Developmental_Delay/419. There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA