Friday, July 13, 2007

Autism News Articles June 18-28th 2007

Autism News Articles
June 18-28th 2007

NOTE:
Brenda Deskin will send our messages of thanks to Eugene Levy, which of course is very encouraging for him for doing such an event such as yesterday. Please ask people to send their thoughts on the event - they can send them to me - and I will forward to Brenda for sharing with Eugene .
Thanks!!!!
Nancy

nancymorrison@rogers.com


Education assistants face layoff
Windsor Star

Jun 20, 2007
Page: A3
Section: News
Edition: Final
Byline: Monica Wolfson


The Catholic school board will lay off as many as 20 education
assistants to balance the 2007-08 budget.

"Staff reductions are part of what we are considering," said Mario
Iatonna, superintendent of business for the Windsor Essex Catholic
District School Board. "But we don't know the numbers."

According to the collective bargaining agreement with CUPE 1358, which
represents education assistants, union members must be notified of job
reductions ahead of time. Union representative Pat Holland could not be
reached for comment. Iatonna said he didn't know if all of those who
got
pink slips would lose their jobs.

Trustees will vote on a budget Monday night.

"A teacher's time is already spread thinly," said one education
assistant who asked that her name not be used. She's worked for the
Catholic board for six years.

"All the time (the teacher) is dealing with these children with special
needs, it's taking away from the classroom," the education assistant
said. "The classes will suffer if there are no assistants to tend to
the
needs of these students."

There are about 275 education assistants that work in elementary and
high schools in the Catholic board. Education assistants with between
four and six years of experience received termination notices effective
July 2. Several assistants were let go two years ago only to be called
back to work in August. Education assistants help in classrooms with
special needs students who are autistic, learning disabled or have Down
syndrome.

The Catholic school board faces similar budgetary issues as the public
board, which eliminated 38 positions -- mostly early childhood
educators
-- last week. Enrolment is declining and primary class size caps of 20
students to one teacher reduce the need for teaching assistants in
primary classes.

"We are still trying to feel our way through the budget," Iatonna said.
The board has a $900,000 budget deficit for the 2006-07 school year
that
trustees must make up before approving the 2007-08 budget.

"The Ministry of Education has indicated we have to balance this year's
budget and can't carry over the deficit," Iatonna said. "We are making
cuts, deferring projects and programs."



From a Listmate:
An interesting read................
----------
Robert F. Kennedy- on AUTISM SPEAKS, and Katie Wright

The poisonous public attacks on Katie Wright this week -- for revealing that her
autistic son Christian (grandson of NBC Chair Bob Wright), has recovered
significant function after chelation treatments to remove mercury -- surprised
many observers unfamiliar with the acrimonious debate over the
mercury-based vaccine preservative Thimerosal. But the patronizing attacks on
the mothers of autistic children who have organized to oppose this brain-killing
poison is one of the most persistent tactics employed by those defending
Thimerosal against the barrage of scientific evidence
linking it to the epidemic of pediatric neurological disorders, including
autism. Mothers of autistics are routinely dismissed as irrational, hysterical,
or as a newspaper editor told me last week, "desperate to find the reason for
their children's illnesses," and therefore, overwrought and disconnected.

But my experience with these women is inconsistent with those patronizing
assessments. Over the past two years I've met or communicated with several
hundred of these women. Instead of a desperate mob of irrational hysterics, I've
found the anti-Thimerosal activists for the most part to be calm, grounded and
extraordinarily patient. As a group, they are highly educated. Many of them are
doctors, nurses, schoolteachers, pharmacists, psychologists, Ph.D.s and other
professionals. Many of them approached the
link skeptically and only through dispassionate and diligent investigation
became convinced that Thimerosal-laced vaccines destroyed their children's
brains. As a group they have sat through hundreds of meetings and scientific
conferences, and studied research papers and medical tests. They have networked
with each other at meetings and on the Web. Along the way they have stoically
endured the abuse routinely heaped upon them by the vaccine industry and public
health authorities and casual dismissal by reporters and editors too lazy to do
their jobs.

Many of these women tell a story virtually identical to Katie Wright's -- I have
now heard or seen this grim chronology recounted hundreds of times in
conversations, e-mails and letters from mothers: At 2-1/2 years old, Christian
Wright exceeded all milestones. He had 1,000 words, was toilet-trained, and
enjoyed excellent social relations with his brother and others. Then his
pediatrician gave him Thimerosal-laced vaccines. He cried all night, developed a
fever and, over the coming months, this smart, healthy child disappeared.
Christian lost the ability to speak, to interact with family members, to make
eye contact or to point a finger. He engaged in stereotypical behavior --
screaming, head-banging, biting and uncontrolled aggression, and suffers
continuously the agonizing pain of gastrointestinal inflammation.

After hearing that story a couple dozen times, a rational person might do some
more investigation. That's when one encounters the overwhelming science --
hundreds of research studies from dozens of countries showing the undeniable
connection between mercury and Thimerosal and a wide range of neurological
illnesses. In response to the overwhelming science, CDC and the pharmaceutical
industry ginned up four European studies designed to disguise the link between
autism and Thimerosal. Their purpose was to
provide plausible deniability for the consequences of their awful decision to
allow brain-killing mercury to be injected into our youngest children. Those
deliberately deceptive and fatally flawed studies were authored by vaccine
industry consultants and paid for by Thimerosal producers and published largely
in compromised journals that neglected to disclose the myriad conflicts of their
authors in violation of standard peer-review
ethics. As I've shown elsewhere [see www.robertfkennedyjr.com], these studies
were borderline fraud, using statistical deceptions to mislead the public and
regulatory community.

The CDC and IOM base their defense of Thimerosal on these flimsy studies, their
own formidable reputations, and their faith that journalists won't take the time
to critically read the science. Meanwhile, the bureaucrats are simultaneously
using their influence, energies and clout in a desperate bid to derail and
defund and suppress any scientific study that may verify the link between
Thimerosal and brain disorders. These would include epidemiological studies of
the Amish-home-schooled kids and other unvaccinated American cohorts. The
federal agencies have refused to release the massive public health information
accumulated in their Vaccine Safety Database (VSD) in order to keep independent
scientists from reviewing
evidence that could prove the link. They are muzzling or blackballing scientists
who want to conduct such studies.

Ironically, it is the same voices that once blamed autism on "bad parenting,"
and "uninvolved" moms that are now faulting these mothers for being too
involved.

Due to this campaign of obfuscation and public deception, Thimerosal-based
vaccines continue to sicken millions of children around the world and potential
treatments -- like the chelation that benefited Christian Wright -- are kept out
of the hands of the mainstream doctors now treating autistic kids with less
effective tools. Like thousands of other mothers of autistic children, Katie
Wright knows what sickened her child. Her efforts to spare other children and
families this catastrophe, deployed with a cool head and calm demeanor, are
truly heroic. Maybe it's time we all started listening. Maybe it's time to start
respecting and honoring the maternal instincts and hard study of Katie and
others by aggressively funding the studies that might verify or dispute them.


********************
"Being Gabriel"
Some books speak to you before you open them: a title, an image, an
author, a blurb. Sometimes, this turns out to be a lovely bit of
serendipity. Sometimes, the promise comes to naught. But at least you might come
to a book that would otherwise pass you by.




From a listmate
CTV NewsNet - Thursday, June 21 2007 - 07:00 (Local) - Segment #1

Bridgitte: SCIENTISTS MAY BE ONE STEP CLOSER TO UNDERSTANDING AUTISM. MUTATIONS IN TWO KEY PROTEINS COULD LEAD TO THE CONDITION. IN TYPICAL CONDITIONS, THE PROTEINS BALANCE EACH OTHER OUT BUT THE STUDY SUGGESTS THAT, IN PEOPLE WATTTISM, THAT BALANCE IS KNOCKED OUT OF KILTER. RESEARCHERS SAY THIS COULD HAMPER THE ABILITY OF NERVE CELLS TO MAKE NORMAL CONNECTIONS WHICH LEADS TO THE DEFICITS SEEN IN PEOPLE WITH AUTISM.
_________________________________________
CTV NewsNet - Thursday, June 21 2007 - 07:30 (Local) - Segment #2

Bridgitte: SCIENTISTS MAY BE ONE STEP CLOSER TO UNDERSTANDING AUTISM. RESEARCHERS AT THE UNIVERSITY OF TEXAS HAVE DISCOVERED THAT MUTATIONS IN TWO KEY PROTEINS COULD LEAD TO THE CONDITION. IN TYPICAL CIRCUMSTANCES, THE PROTEINS BALANCE EACH OTHER OUT, BUT THE STUDY SUGGESTS THAT, IN PEOPLE WITH AUTISM, THAT BALANCE IS KNOCKED OUT OF KILTER. THE RESEARCHERS SAY THIS COULD HAMPER THE ABILITY OF NERVE CELLS TO MAKE NORMAL CONNECTIONS, WHICH LEADS TO THE DEFICITS SEEN IN PEOPLE WITH AUTISM. THE DISEASE AFFECTS THE WAY A PERSON COMMUNICATES AND INTERACTS WITH OTHER PEOPLE.
_______________________________
Golf fundraiser for autism
Regina LeaderPost

Jun 21, 2007
(Too late, sorry)
Page: C6
Section: Sports
Edition: Final
The Shooting Stars Foundation's Golf Gala FORE Charity -- a fundraiser for autism awareness -- is to be held Saturday to Monday.
Shooting Stars has been founded by Regina-born NHLers Mike Sillinger (New York Islanders) and Jamie Heward (Los Angeles Kings). They will be among the prominent figures at a celebrity autograph session, to begin Saturday, 6 p.m., at Casino Regina's Central Hall. The auction is open to members of the general public.
Also on Saturday, the Shooting Stars Celebrity Poker Tournament is to be held, with proceeds going to charity. The poker players will include Derek Boogaard (Minnesota Wild), Chris Campoli (New York Islanders), Bruno Gervais (Islanders), Brett Clark (Colorado Avalanche), Boyd Kane (Philadelphia Flyers), Brooks Laich (Washington Capitals), Brian Sutherby (Capitals), Garth Murray (Montreal Canadiens) and NHL referee Mick McGeough.
The poker tournament is to begin Saturday, 7 p.m., at Casino Regina's Coach Room. There is a $100 buy-in registration fee. Space is limited to 100 players. Tickets are available at the Casino Regina box office. An NHL player will be at every table.
As well, a silent auction is to begin Saturday, 3 p.m., at Casino Regina. The auction winners will be announced Sunday night at The Press Box (909 Albert St.)
The three-day event is to conclude Monday with a golf tournament at the Royal Regina Golf Club. The shotgun start is slated for 1 p.m.
For more information, call 596-8880 or e-mail
shootingstars@sasktel.net.

rovince must reveal cost of autism lawsuit: NDP
Updated Tue. Jun. 19 2007 3:00 PM ET
Canadian Press
TORONTO -- The Ontario government's willingness to go to court rather than reveal how much it spent on fighting an autism treatment lawsuit shows it cares less about children and more about covering its tracks, opposition critic Shelley Martel said Monday.
The Ontario Superior Court of Justice heard arguments Monday about a request under the province's Freedom of Information and Protection of Privacy Act to reveal how much the government spent defending a lawsuit filed by parents of autistic children.
The government doesn't want to reveal how much it spent on legal fees, when that money - perhaps as much as $1.5 million - could have helped so many kids instead, Martel, a New Democrat, said outside the court.
"The public has a right to know how much money the McGuinty Liberals have spent fighting children with autism and their parents in court,'' Martel said.
Ontario's information and privacy commissioner ordered that the total cost be released earlier this year, but the government launched a court challenge of that decision.
On Monday, Crown lawyers argued those fees fall under solicitor-client privilege and shouldn't be disclosed. They told the court that disclosing the fee would set a precedent that would apply to all lawyers and their clients across the province.
The Crown also said individual fees are spread across some 2,000 pages of documents, and pulling out a single total figure would not be simple.
The core issue of the lawsuit was access to specialized treatment in school for autistic children, which can cost from $30,000 to $80,000 per child each year.
Families who say they've spent their savings and taken extra jobs to pay for the treatment filed suit in 2004, alleging the government failed the children by not providing access to the treatment in school.
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20070618/autism_lawsuit_070618/20070618?hub=Canada





Autism legal bill still a secret: Martel; Ont. government won't reveal cost of treatment lawsuit

Michael Oliveira / CP
Ontario - Tuesday, June 19, 2007 Updated @ 7:23:44 AM

The Ontario government spent another day in court Monday arguing why its legal bill for fighting an autism treatment lawsuit should stay secret, which means even more money has been wasted on lawyers rather than helping kids, the opposition said.

The Ontario Superior Court of Justice heard arguments about a request under the province's Freedom of Information and Protection of Privacy Act to reveal how much the government spent defending against a lawsuit filed by parents of autistic children.

Ontario's information and privacy commissioner had ordered that the total cost be released earlier this year, but the government launched a court challenge of that decision.
The government doesn't want to reveal how much it spent on legal fees because that money - perhaps as much as $1.5 million - could have helped so many kids instead, said New Democrat Shelley Martel, who originally filed the request for information in 2004.

It's particularly embarrassing for the government because Premier Dalton McGuinty broke a promise made in 2003 to make autism treatment widely available, she said.

"A great deal of money has been spent - squandered in my estimation - fighting these families, when if he had kept his promise, the families would have gotten the (treatment) that they needed and there wouldn't have been a court case," she said.

Crown lawyers said the government's legal bill is covered by solicitor-client privilege and shouldn't be disclosed. They told the court that disclosing the fee would set a precedent that would apply to all lawyers and their clients across the province.

But lawyers for Martel and Information and Privacy Commissioner Ann Cavoukian argued that legal costs don't fall within the rules of solicitor-client privilege. Even if a figure could help determine how many hours lawyers worked on the case, or how much money was spent on expert witnesses, that's not privileged information, said William Challis, who was representing Cavoukian.

Martel also had the support of Conservative Leader John Tory, who appeared at the courthouse to show his solidarity for her case.

"I think this issue goes well beyond partisanship," Tory said.



Thestar.com

Enthusiasm, confidence make Raleigh Seldon a natural counsellor
Jun 22, 2007 04:30 AM
Leslie Ferenc
STAFF REPORTER

From the moment she finished her last exam, Raleigh Seldon has had one thing on her mind – going to camp.
It always marks the beginning of her summer holiday and this year promises to be one of the best yet for the 15-year-old.
In a few days, Seldon will be heading to the wide-open spaces of Camp Kennebec. But this summer, she won't be boarding the bus as a camper.
She's "graduated" and is looking forward to an important rite of passage – two weeks as a volunteer CIT.
That's camp lingo for counsellor in training. Seldon's dreamed of that from the time she set foot at the camp on the shores of Bull Lake six years ago. The training will bring her an important step closer to the ultimate job of many teens – spending a whole summer at camp working as a counsellor.
For her, there's no better place than Kennebec, one of 103 camps supported by the Fresh Air Fund this year.
"It's a very cool environment to be in," the Grade 11 student at Greenwood College School said of the 364-hectare camp – a wilderness getaway for children with special needs, including Tourettes, autism, and those with learning, social and behavioural challenges, as well as developmental difficulties.
While there, she'll focus on understanding the challenges her young charges face, helping them build new skills and meeting their needs to ensure their camp experience is unforgettable.
Seldon is no stranger to kids who face challenges. Her brother Cooper, 18, has Attention Deficit Hyperactivity Disorder. He registered at Kennebec about six years ago after mainstream camps failed to meet his needs.
"I decided I wanted to go to camp, too," Seldon said. "I'm really glad I did. ... There's a real sense of community."
And at Kennebec, everyone's equal – able or disabled. It's what she loves most.
From the start, Seldon said she found herself taking on a leadership role, reaching out to help when it was needed.
Her enthusiasm, confidence and positive attitude are contagious and make kids feel comfortable – just the qualities of a good CIT.
"I try to lead by example," she said.
From a Listmate
Ask Lindsay Moir:
'Timeout Room': School safety and child rights
Friday, June 22, 2007
QUESTION:
Our son has some behaviours which are erratic and occasionally, unpredictable. We share some of the concerns that the school has about behaviour management. On the whole though, his behaviour can be managed by people who can see his anxiety building and divert him early.
We were recently shocked to find out that he spends most (if not all) of his time in a special "timeout room" with an EA. We had agreed to that, as part of a behaviour management plan, he could be removed to this area to calm him down when the classroom was "too much" for him to handle. Our understanding was this was just a short "sensory break" then he would return to his class with support.
It appears that the school and board team has, on their own, decided to use the space pre-emptively . . . "when he is in there he CAN'T hurt anyone." We noticed an escalation in the number of behavioural incidents and the number of calls to take him home.
It is our opinion that this isolation is, in fact, the cause of his behavioural escalation — of course, the increase in bad behaviour is raising a lot of safety concerns. There is a great difference of opinion between the board psychologist's perception (based on justifying the staff decisions, and maintaining the isolation strategy which they like) and our private and community behaviour resources (who believe that this practice needs to cease).
Can a school over-rule our trusted support team and simply arbitrarily impose THEIR plan?
ps: He is NOT locked in the room, therefore it is not officially a Timeout Room, under the Child and Family Services Act - it is technically "an Alternate Learning Setting" according to board staff.
ANSWER: (after a telephone chat)
In your IPRC your son's current Grade 2 placement was "Regular Classroom with Resource Assistance." This current "Alternate Learning Setting" contradicts this. You have had a "change of placement" without an IPRC. Ask to have a reconvened IPRC immediately.
Balancing the school's Safety concerns with your son's rights and needs is a complex operation -your son's erratic and sometimes "unpredictable" behaviour causes the staff to move into a "preventative" mode. Unfortunately they have found a solution that has eliminated all their safety concerns - BUT is not good for your son!
The effort here is to find a way to address their safety issues in a way that does not escalate your child's behaviour and eliminate his opportunity to socially interact with his peers.
The current "plan" does not do this!
Here are my suggestions ("a plan to develop a plan"):
• acknowledge their "safety concerns" and try to quantify them. Are they situation specific? Does time of day matter? What preceded the incident? How severe is the possibilty of injury? Are they related to particular staff and their interaction with him. By focussing on identifying and addressing their concerns, you will model collaborative problem solving.
• THEN, present your concerns about the "Alternate Learning Setting" and your belief that its use is counter-productive. If the goal is to reduce dangerous behaviour, then why use a strategy that escalates bad behaviour?
• THEN, give permission for the private and board psychologists to consult with each other about your child. Ask them to bring a JOINT Behaviour Management Plan to a Team Meeting.
• INSIST that this plan is very specific about which behaviours are targetted and what the specific response to that behaviour is to be. Include specific reporting and tracking responsibilities.
• WRITE A SAFETY PLAN, separate from the Behaviour Management Plan. A safety plan is about managing RISK. Managing risk will provide direction (and comfort) for the school staff.
• SET A SCHEDULE for reviewing and revising both plans on an ongoing basis. Set up an information flow that will keep everyone "who needs to know" informed - then their will be no surprises as we work together!
The answer to your question really is that FEAR about SAFETY, led to the school acting inappropriately in an attempt to minimize risk of injury to other children. A strategy that worked in one context, was "extended" to meet another purpose. In hindsight, if they had been less secretive and more collaborative, if the above "plan to develop a plan" had been done months ago, there would have been no problem. In Special Education Transformation, Minister Wynne recommends that educators be trained in collaborative communication and working with community professionals - this incident is typical of the problem that needs to be addressed!
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at ask.questions@yahoo.ca He will answer as many questions as possible.
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Keep up-to-date with our infomative news articles.

By request:
If you are, or you know, a family impacted by Autism Spectrum Disorders
this email is for you, please read on.

Parents Listen, a new speaker series
created by parents of a child on the Autistic Spectrum,
is proud to present for the first time in Canada
Raun K. Kaufman of the Autism Treatment Center of America™ and The Son-Rise Program®.
Below you will find more detailed information about Raun, and about Parents Listen for your immediate viewing.

Raun will be speaking to parents, family members, and service providers
impacted by children with Autism Spectrum Disorders
on Wednesday, July 11th at 6:30pm
at Ryerson University’s Business Building
55 Dundas Street West, Toronto

Registration is now OPEN!
Seating is limited, so please register as soon as possible to guarantee your seat.
This event is free, and we are accepting on-line donations
(secured through PayPal) to help cover the cost of putting on this event.
Please contribute if you are able.
Click here to register and/or make a donation.
You can also visit www.pallettcorner.net for more information and links to related sites.

We are requesting your assistance to get the word out about this event.
Please forward this email (with a personal note from you at the top) to
other families, organizations, professionals, or agencies either directly impacted by Autism Spectrum Disorders
OR may be connected to these groups in some way and would make a difference.
The impact this event has on these families depends on us getting the word out to as many people as possible. We’re depending on you!
We have also attached two PDFs, (requires Adobe Acrobat Reader free at www.adobe.com)
( SEE WEBSITE)
one is an email notification, the other is a pamphlet that you can use in addition to or in place of this email.
Please feel free to forward these all on, and encourage others to do the same,
OR print them out and pass them on in person.
***A few minutes of your time may make a lifetime of difference to a family and child out there. ***
Thank you for your interest in this event!
Michael and Kelli Pallett
Parents Listen
***************************************
More details about Raun K. Kaufman:
Once Autistic,
He Defied the Experts
and His Story of
Complete Recovery
Became a Revolution
of Hope Around
the World.

Raun Kaufman is CEO, writer and teacher at the Autism Treatment Center of America™.
He is coming to Toronto on Wednesday, July 11th to speak to parents, families, and service providers impacted by Autism Spectrum Disorders.

Raun’s Journey
At 18 months, Raun was diagnosed as irreversibly autistic.
His parents, authors/teachers Barry Neil Kaufman and Samahria Lyte Kaufman,
created an innovative home-based, child-centered program now known as The Son-Rise Program®,
enabling Raun to recover completely from autism.
Raun was a mute, withdrawn child with a tested I.Q. of less than 30.
Through the love and devotion of his parents, Raun was transformed
into an outgoing, social boy with a near-genius I.Q.
Raun is now a graduate from Brown, a leading Ivy League University, with a degree in Biomedical Ethics.
Currently, as a Certified Son-Rise Program Teacher, he presents and lectures worldwide,
teaching the very techniques and tools responsible for his own complete recovery.
Raun’s journey was chronicled in the best-selling book, Son-Rise, The Miracle Continues
by his father, Barry Neil Kaufman, and is the subject of the award-winning TV movie, Son-Rise: A Miracle of Love,
seen by over 300 million people worldwide.
International Speaker
Mr. Kaufman, who brings a rare combination of inspiration, compassion and technical expertise,
has spoken at universities and conferences, and completed lecture tours in the U.S.,
United Kingdom, Ireland, the Netherlands, Sweden and Norway.
His interactive lectures, designed for parents and professionals, focus on effective methods of autism treatment, including an introduction to the techniques of The Son-Rise Program—enabling participants
to put their newly-acquired tools into practice immediately.
“It is always a treat to hear such a dynamic and engaging speaker. Raun’s passion
and hope for persons challenged with autism came through in every word he spoke.
His ideas truly are focused on helping people achieve their highest potential.”

- Mark H. Yeager, Ph.D., President,
TEAAM (Together Enhancing Autism Awareness in Mississippi)

More Details about Parents Listen:

Who are we?
Michael and Kelli Pallett saw an opportunity to make a difference for parents and families
impacted by Autism Spectrum Disorders and created Parents Listen.
Michael and Kelli are parents of a 4 yr old boy named Jordyn who is diagnosed on the Autistic Spectrum.
They live outside Orangeville.
For more information, visit www.pallettcorner.net.
Why a Speaker Series for Parents?
Parents are a child’s best advocate. They are the most passionate, motivated, dedicated, and loving resource in their child’s life.
Being aware and informed of the variety of options available, parents have the freedom to choose what is best for their
child’s development and care, and for their family.
Through the Speaker Series we are committed to inspiring and empowering parents to create loving, nurturing environments
full of possibility in which the dreams they have for their child will be fulfilled.
Volunteers:
We can’t do this all alone. We would be thrilled to hear from anyone wanting to join our team and assists with this, or future events.
What you contribute will be completely up to you. Please send us an email at parentslisten@gmail.com.
Future Speaker Events:
We are actively listening for potential speakers whose talks will make an immediate difference for families impacted by Autism Spectrum Disorders.
We are considering future speakers in the area of nutrition (diet & supplementation), given the tremendous impact simple changes
can have on a child’s behavior and ability to interact. Other areas include biomedical interventions, educational methodologies, and sensory integration.

Your ideas and requests are welcomed. Please send us an email with your ideas at parentslisten@gmail.com.

Please visit the website to download the forms for registration.

http://yorkregion.com/article/29230



Therapists should be in classroom: parents

Richmond Hill
Jun 06, 2007 09:02 PM
By: Michael Power
Therapists must be allowed into public school classrooms to provide specialized help to autistic students who need it.

That's according to parents who attended a debate among MPPs at Richmond Hill's Sheraton Parkway and Best Western Toronto North Hotel Monday night.

Oak Ridges MPP Frank Klees was among five politicians who participated.

Education Minister Kathleen Wynne, Children and Youth Services Minister Mary Anne Chambers, Conservative attorney general critic Christine Elliott and NDP autism issues critic Shelley Martel also participated.

Currently, therapists who specialize in a kind of treatment called intensive behavioural intervention can't accompany autistic students into classrooms, Newmarket resident Simone Hubers said.

"That's one of the key points," said Ms Hubers, whose eight-year-old daughter, Nell, is autistic. "Our children have a different way of learning. The word that scares school boards is 'therapy'."

Intensive behaviour therapy can involve one-on-one or group sessions. It helps develop basic skills, such as communication and behaviour control.

Many of those who attended Monday debate echoed that sentiment.

Ms Martel received enthusiastic applause after suggesting — if they form a government in the provincial election this fall — the NDP would work to get therapists into classrooms to use intensive behavioral intervention with autistic students.

"It's critical for the therapist to be there because that's what helps your child learn," Ms Martel said.

Denise Yee of Newmarket, who also attended the debate, said she pulled her nine-year-old son David from the public school system because she thought he wouldn't get the support he needs there.

David now goes to a private school where a therapist can join him in the classroom.

"He can learn, but he needs specialized people who know how to teach him," Ms Yee said.

"If therapists were allowed in the classroom, I'd have kept him in the school system."
For our American neighbours:
Senate Subcommittee Approves Full Funding for CAA
Bill now moves to full Senate Appropriations Committee
The Senate Labor, Health and Human Services and Education Appropriations Subcommittee has approved full funding for the Combating Autism Act as part of its fiscal 2008 spending bill. Specifically,the bill provides $53.5 million for programs at the Centers for Disease Control (CDC) and Prevention and Health Resources and Services Administration (HRSA). This is an $18.5 million increase over last year's level, and fully funds the Combating Autism Act's recommendations for autism surveillance, early detection, education, awareness and intervention activities. More details about the bill are available here.

The Committee also took an important step toward ensuring that the National Institutes of Health follow the recommendations of and provide funding for the Autism Strategic Research Plan that will be developed by the Interagency Autism Coordinating Committee (IACC) . Today's Senate bill provides $1 million for creation and implementation of the IACC. The bill also requires the NIH to provide a report by July 1, 2008 on its implementation of the research-related provisions of the Combating Autism Act, including funding levels for research recommended by the IACC's strategic plan.

The bill will now go to the full Senate Appropriations Committee for consideration, and then on to the Senate floor. Following Senate approval, the bill will proceed to conference committee where it will be reconciled with the appropriations bill passed by the House of Representatives. Autism Speaks Continues Push for State Insurance Legislation Autism advocates have also been hard at work in Pennsylvania advocating for PA House Bill 1150, which would require private insurance companies to provide coverage for autism- related services and therapies for individuals with autism up to age 21. Dozens of families and individuals affected by autism will join House Speaker Dennis O'Brien on Monday at a rally in the Harrisburg Capitol Rotunda to urge members of the Pennsylvania legislature to vote in favor of the bill. The Pennsylvania bill is designed to serve as a model for other state legislation as Autism Speaks continues its nationwide effort to help end insurance industry discrimination against children with autism. Learn about state and federal legislation (including how to help in Pennsylvania) here, or email us at advocacy@autismspeaks.org.

IAN Project Conference Held in Baltimore The IAN Project, an online database collecting information from families of children with Autism Spectrum Disorders all over the United States, held its second research conference in Baltimore, Maryland this week. Autism researchers from a wide variety of disciplines, as well as parents and advocates, gathered to hear about progress and future plans. Substantial time was devoted to topics families have asked IAN to address, such as expanding the project to include adults with ASDs and creating an IAN questionnaire focused on environmental causes of autism. Read the IAN Research Conference Report.
Families interested in participating in IAN Research can learn about the project at http://www.ianproject.org.

9th Annual NY Celebrity Golf Challenge Raises Over $1M Autism Speaks' 9th Annual NY Celebrity Golf Challenge raised more than $1 million on June 18. The event, held at the renowned Winged Foot course in Mamaroneck, New York, brought out celebrities from the worlds of sports and entertainment. Read more and watch video. Plus, see photos.

Build-A-Bear Workshop Donates $50,000
Build-A-Bear Workshops around the country raised funds and awareness during National Autism Awareness month through sales of purple satin hearts. For each purple heart purchased, Build-A-Bear Workshop donated $1 to benefit Autism Speaks. This is the third year that Build-A-Bear has contributed to the mission of Autism Speaks through a retail promotion during the month of April. Read more about this, and other recent events. In Their Own Words - Living With Asperger's
In our latest "In Their Own Words" essay, a recent high school graduate with Asperger's Syndrome (and Autism Speaks intern) tells how support and therapy made a difference in her life. Read more.

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McGuinty fails kids with autism
Jun 23, 2007 04:30 AM
________________________________________
Families of autistic kids seek
provincially funded treatment
June 19
________________________________________
It's been said that actions speak louder than words. If that is the case, I find the recent actions of the provincial government related to autism both deafening and disturbing. Despite all their announcements meant to trick the voters into thinking that Premier Dalton McGuinty has lived up to the commitments he made to children with autism, the Liberals took extraordinary actions against them in the courts during the last week.
The first was in the Taline Sagharian class-action lawsuit, where government lawyers tried to bully families fighting for a proper education for their children by bringing an order forcing them to pay $50,000 in government costs. Thankfully, the government lost that motion.
The second was on Monday, when government lawyers fought the efforts of MPP Shelley Martel, who wants to know how much money was spent during the Deskin-Wynberg case. Martel is recognized as the most outspoken member of the Legislature on autism issues, and rather than disclose the fact that the government spent millions of dollars on lawyers instead of children, they are dragging Martel into court. How absurd.
I spent time in both courtrooms listening to the government's lawyers and never have I been so angry.
As a parent of a child with autism, a teacher and a co-founder of the Ontario Autism Coalition, I've spent the last two years organizing rallies, petitions and letter-writing campaigns to pressure this government into doing the right thing on this issue. The only time it's shown signs of progress is when we've embarrassed it in the media.
The Liberals have had four years to do right by our children. They have failed. Now, in their last few months in office, they are showing us how they really feel about people who try to hold them accountable.
________________________________________
Laura Kirby-McIntosh, Ontario Autism Coalition, Concord

Although from Los Angeles, this is perhaps worth sharing to spark some interest in families to work on developing similar programs here in Canada at some of our amazing univerisities.

southernpaulsen@yahoo.ca wrote:
Date: Sat, 23 Jun 2007 07:12:04 -0700 (PDT)
From: southernpaulsen@yahoo.ca
Subject: Ending is a beginning for special-needs students

Ending is a beginning for special-needs students

Once unthinkable, higher learning now awaits developmentally disabled graduates of Village Glen School.

By Carla Rivera
Times Staff Writer

June 16 2007

Jonathan Else had looked forward to this day for years, so when he stepped up to the podium Friday at Village Glen School to receive his high school diploma, it was a "huge moment."

The complete article can be viewed at:
http://www.latimes.com/news/local/la-me-graduates16jun16,0,2114494.story?coll=la-home-local

Visit latimes.com at http://www.latimes.com


WORTH REPEATING
Jun 18, 2007 04:30 AM
Autism is the most common developmental disorder affecting children, with as many as one in 160 children struggling under its limitations. A neurological condition that can result in a wide spectrum of behaviours and problems, its cause remains wrapped in mystery.
Autism is also, unfortunately for the children afflicted with it and for their families, one of the most expensive conditions to treat. There are families spending as much as $80,000 a year, Wendy Roberts, head of the autism research unit at Toronto's Hospital for Sick Children, told a Toronto newspaper.
Is this fair? Therapy exists that in some cases can make the difference between a life governed by a severe disorder and a life in which near-normalcy can be reached. Families of autistic children have sued to try to get government funding for therapy.
A group of 28 families in Ontario was rebuffed by the Supreme Court of Canada. The Supreme Court likewise rejected in 2004 a suit by British Columbia families, ruling it is up to legislatures to determine the level of medical funding.
So families are, understandably, trying to mobilize public opinion. This week, Canadian comedian Eugene Levy was drafted into service, telling the CBC "families with autistic kids have the same rights as everybody else. Treatment has to be covered the way it's covered for any other debilitating disease."
As tempting as it is to agree, it is not correct that all medical treatments, regardless of cost, are covered under medicare.
But if legislators and officials have made the heart-wrenching decision not to fund maximum treatment, they could at least put more money into research. Levy was right to criticize Canada's research shortfall.
Last year, prominent researcher Dr. Peter Szatmari said that since 2000 Canada has spent a mere $16 million researching autism. The United States, in contrast, plans to spend $200 million in one year to set up centres of excellence to study autism.
Senator Jim Munson argued this week that not treating the disorder as well as we can costs the Canadian economy $3.5 billion a year, including group homes, respite care, and institutional care.
Nothing is sadder than having to choose between patients. Of course, parents will fight for their children.
But it is up to legislatures to make the hard choices. That's what they're there for.

________________________________________
This is an edited version of an editorial in The Gazette, Montreal, Friday.

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

Autism case could be precedent-setting
June 11, 2007
ASSOCIATED PRESS

WASHINGTON – The parents of 12-year-old Michelle Cedillo asked a U.S. federal court today to find that their child's autism was caused by common childhood vaccines, a precedent-setting case that could pave the way for thousands of autistic children to receive compensation from a government fund set up to help people injured by the shots.
Wearing noise-cancelling headphones, Michelle Cedillo of Yuma, Ariz., was brought into the courtroom in a wheelchair at the start of the proceedings before the U.S. Court of Federal Claims. She stayed only a short time.
Her parents, Theresa and Michael Cedillo, allege a preservative called thimerosal used in vaccines weakened their daughter's immune system and prevented her body from clearing the measles virus after she was immunized for the disease at age 15 months.
Today, Michelle suffers from a litany of health problems, including severe autism, inflammatory bowel disease, glaucoma and epilepsy.
"We hope to find out what happened and hopefully get the help she needs," said Theresa Cedillo, who takes care of her daughter full time at home.
The court's special master, George Hastings Jr., thanked the family for allowing theirs to be the first of nine test cases that will help guide the resolution of some of the nearly 5,000 similar claims lodged with the government.
"Clearly the story of Michelle's life is a tragic one," Hastings said in pledging to listen carefully to the evidence presented during the three-week hearing.
The burden of proof is easier than in a traditional court. Plaintiffs only have to prove that a link between autism and the shots is more likely than not, based on a preponderance of evidence.
Large scientific studies have found no association between autism and vaccines containing thimerosal.
But many parents say their children's symptoms did not show up until after their children received the vaccines, required by many states for admission to school.
"These are families who followed the rules," said Thomas Powers, a lawyer acting for the Cedillos. "These are families who brought children in for vaccines. These are families who immunized their children."
Powers argued that the science regarding a possible vaccine-autism link is in dispute.
Government lawyer Vincent Matanoski dismissed much of what the plaintiffs are expected to present as conjecture or speculation.
"You'll find their hypotheses untested or, when tested, have been found false," Matanoski said.
Since 1999, more than 4,800 families have filed claims with the government alleging their children developed autism as a result of routine vaccinations. Most contend that a preservative called thimerosal is to blame for the impaired social interaction typical of the disorder.
The court is being asked to decide whether there is a link between autism and childhood vaccines. If it finds one exists, the families could be eligible for compensation under the Vaccine Injury Compensation Fund, a program established by Congress to ensure an adequate supply of vaccines by safeguarding manufacturers from lawsuits.
Under the program, people injured by vaccines receive compensation through a special trust fund.
Autism is characterized by impaired social interaction. Those affected often have trouble communicating, and they exhibit unusual or severely limited activities and interests.
Today's case addresses the theory that the cause of autism is the measles, mumps and rubella vaccine in combination with other vaccines containing thimerosal. The preservative, about 50 per cent mercury by weight, is no longer found in routine childhood vaccines but is used in some flu shots.
In July 1999, the U.S. government asked vaccine manufacturers to eliminate or reduce, as expeditiously as possible, the mercury content of their vaccines to avoid any possibility of infants who receive vaccines being exposed to more mercury than is recommended by federal guidelines.
Classic symptoms of mercury poisoning include anxiety, fatigue and abnormal irritation, as well as cognitive and motor dysfunction.

From: "Karyn Dumble"
>To: "Karyn Dumble"
>Subject: FOR DISTRIBUTION: Weekly News
>Date: Thu, 21 Jun 2007 16:01:19 -0400
>
>This message has been sent to all Chapter Presidents and Staff.
>
>Please distribute it to your members.
>Scholarship Recipients Announced at Conference
>
>Scholarship Recipients for the Jeanette Holden Post-Secondary
>Scholarship for Siblings of Individuals with ASD and the Eleanor
Ritchie
>Post-Secondary Scholarship for Individuals with ASD were announced at
>the Autism Ontario ASD Conference "Building a Community of Acceptance"
>on June 16, 2007. Please help us celebrate these individuals by
sharing
>the information with your chapter members.
>
>
>
>Eleanor Ritchie Scholarship
>
>Along with donations from Chapters, we were delighted to receive a
>one-time donation from an individual that allowed us to support all 6
>applicants for this scholarship.
>
>Matthew Brown from Burlington
>
>Jordon Eady from Ottawa
>
>Mackenzie Neal from Goderich
>
>Maureen Pytlik from Ottawa
>
>Richard Keegan from Thunder Bay
>
>David Spiers from Ottawa
>
>
>
>Jeanette Holden Scholarship
>
>At the Conference, we were able to announce 5 recipients for the
>scholarship supported by donations from chapters and individuals. As
of
>Wednesday this week, we have received additional donations which have
>allowed us to support 2 more for a total of 7 scholarships.
>
>Evan Crawford from Brechin
>
>Nicole DeRepentigny from Apple Hill
>
>Lesslie Elliot from Sault Ste. Marie
>
>Leah Kesselman from Guelph
>
>Ryley Neal from Goderich
>
>Shealyn Niles of Thunder Bay
>
>Lydia Wikkerink from Elmira
>
>
>
>Autism Ontario Conference A Success! Next up: SEAC Rep Training
>
>Save the Date: October 19 & 20, 2007 is the next time representatives
>from across the province come together to learn and network.
>
>Our October session is designed to train our SEAC reps and alternates
on
>our organization, policies, and other special items. As a SEAC rep. or
>alternate, what do you need to know in order to fulfill your role in
an
>informed and responsible way? Submit your ideas to
>Karyn@autismontario.com. (P.S. Presidents' Council takes place on the
>evening of October 19th.)
>
>
>
>Interested in finding out more about the role of a SEAC rep or
>alternate? Most of our Chapters have at least one rep or alternate
>position currently available. Contact your local Chapter.
>
>
>
>Bridges' needs AT trainers
>
>Forwarded from Jean Woolford, Special Projects at Autism Ontario:
>
>Hi Jean:
>
>I'm asking for a favour. Because of overwhelming demand, Bridges is
>expanding its professional development program and we have to hire new
>trainers. We thought we'd ask our friends to see if they might know
>someone who would be interested in this kind of work.
>
>Trainers will be paid per hour, will work during the school calendar
(so
>summers and Christmas and March break will be off, for the most part)
>and during the school day. They will be working with small groups and
>individual students and educators mostly in the GTA, but there are a
>limited number of opportunities in other parts of Ontario. The
software
>they will work with will be an LD suite which may include Kurzweil,
>Draft:Builder, Co:Writer, Write:Outloud, Dragon Naturally Speaking,
>Smart Ideas and/or a suite used predominantly with ASD/DD kids that
may
>include Boardmaker, Classroom Suite, OverlayMaker and Writing with
>Symbols. We will train potential trainers over the summer but
>experience with 2 out of the above in either of the LD or ASD/DD
suites
>is preferable. We expect that typically trainers would be working
about
>3 days a week but that may be up to 5 days a week at peak periods,
about
>6 hours/day.
>
>I think this would be a great opportunity for EA's, teachers, CDA's or
>other professionals who:
>
>* May be retiring but are looking for extra work.
>* Coming back from maternity or long term disability leave, but
>may not want to work full time in the classroom or clinic.
>* Are taking a sabbatical year and want to expand their abilities
>in assistive technologies.
>* Are looking for an alternative and/or supplement to supply
>teaching.
>* A mature recent graduate who may be looking for an alternative
>to clinic or classroom work.
>
>Potential candidates can contact me and I'll pass on the information
to
>our search committee.
>
>
>
>We are also looking for a French speaker who would also be willing to
>travel to Quebec and other parts of Canada. This would probably be
more
>of a full time position.
>
>
>
>Thank you for your help in this.
>
>
>
>Best regards,
>
>Bogdan Pospielovsky
>
>Bridges
>
>Phone: 1-800-353-1107 ext. 234
>
>
>
>ARCH Alert
>
>On behalf of ARCH, please find attached this issue of ARCH Alert,
>published on 18 June 2007. It has been provided to you in both Word
and
>text formats.
>
>
>
>INSIDE THIS ISSUE
>
>
>
>- Letter from Nominations Committee
>
>- Note from Phyllis Gordon, Executive Director
>
>- Final Customer Service Standard Released to Minister
>
>- New AccessON Website Launched
>
>- Government Action Line Expanded to those Receiving CCAC Services
>
>- CRTC Issues New Policy on Closed Captioning
>
>- Accessing Safe Assistive Devices in Canada
>
>- Ontario Human Rights Commission's Consultations on Rental Housing
>
>- Ontario Human Rights Commission Releases Family Status Report and
>Policy
>
>- CanWest Challenges Restriction on Direct to Consumer Ads
>
>- Mental Health Commission of Canada is Looking for Board Members
>
>- Assembly Releases its Recommendation on New Electoral System for
>Ontario
>
>- On-Line Library of Free or Inexpensive Adaptive Software
>
>
>
>Theresa Sciberras
>
>Administrative Assistant
>
>ARCH Disability Law Centre
>
>425 Bloor St. E., Ste. 110
>
>Toronto, Ontario M4W 3R5
>
>Tel.: 416-482-8255 Toll-free: 1-866-482-2724
>
>Fax: 416-482-2981 Toll-free: 1-866-881-2723
>
>TTY: 416-482-1254 Toll-free: 1-866-482-2728
>
>E-mail: scibert@lao.on.ca
>
>www.archdisabilitylaw.ca
Successful Grade 1 is great cause for celebration
Michael and Kevin Blane
JOHANNA WEIDNER
(Jun 23, 2007)
Who: Michael and Kevin Blane.
When we first wrote about them: December 2003. The Cambridge twins were about half a year into an intense, home-based therapy program for autism. Michael and Kevin were diagnosed with the pervasive development disorder in spring 2003 when they were almost three.
The boys displayed typical behaviours of autism -- playing alone, not talking, avoiding contact, hitting their heads and flapping their arms. They retreated into their solitary worlds, even from the affection of their parents, Audrey and Don Blane, and older sister, Chantale.
"The outside world frightened them," their mother said.
Reaching out . . . The twins' parents researched the disorder and discovered a program developed by an autism-treatment specialist in London. The province pays for a behavioural-intervention program, but the Blanes were drawn to this other holistic approach that combines behavioural therapy, special diet and attitude training.
The program, called intensive multi-treatment intervention, was a big commitment, requiring 40 hours of one-on-one time for each boy every week. Two special playrooms were created in the family's home for the individual therapy for the boys.
Filling those hours of therapy required finding volunteers, including two workers from Extend-a-Family, and enlisting family and friends. The approach was not to try to eliminate the autistic behaviour, but to join the twins in what they were doing. The boys were constantly engaged by asking questions, singing, talking, playing and keeping eye contact to forge an emotional and social connection that's missing in autistic children.
Steady improvements . . . Michael and Kevin soon started pulling out of autism and continued to improve as the years passed. The boys began talking, playing together, seeking affection from their family -- basically becoming engaged with the world.
The Record followed the twins' progress in several stories, the latest last summer after three years in the program. At that time, the boys had joined regular classes at Sunshine Montessori School in Kitchener for a couple of months, and they were signed up for Grade 1 in the fall.
Today . . . The Blanes are hosting a party to celebrate the boys' successful finish of Grade 1. All the people who have helped the twins along the way are invited. Michael and Kevin, now 7, succeeded in a regular class, without an educational assistant and no curriculum modification.
"They have earned it on their own merits and with flying colours," Audrey said.
The boys have also been busy every day after school in swimming, sports and music classes.
"Michael and Kevin have such an incredible eagerness to learn. . . . There is no mountaintop too high for these guys to climb up."
At the start of Grade 1 last fall, the boys were shy and timid. The Blanes weren't sure what to expect, but they were pleasantly surprised.
"They did a lot of growing up in the past year," she said.
"You cannot pick them out of a crowd of kids on the playground now."
Before, they were like magnets and stuck to each other, afraid of other children. Now they play with their own friends.
Exploring the world . . . The therapy ended when the twins started school, but supervised playdates continued to boost the boys' self-confidence. And that's the focus for this summer, along with honing social skills, which they'll do in the five summer camps in which they're enrolled.
"They need to see how typical kids play and react," Audrey said.
The boys also need to catch up to their peers in another crucial area that can't be taught in school -- life experience. They twins missed out on a lot of experiences during the intense home program.
"We need to get them out in the world and just show them what's out there," their mother said. "They're going to be exposed to what they haven't had in their life."
But all those areas for improvement are minor compared to where the boys came from four years ago when they were diagnosed with autism. Today, they do not fit the criteria for the disorder, their mother said. They are only a bit shy and language-delayed.
"To see how far they've come, it's just amazing," she said. "Michael and Kevin are my miracles."
jweidner@therecord.com
http://www.therecord.com/NASApp/cs/ContentServer?pagename=record/Layout/Article_Type1&c=Article&cid=1182574123949&call_pageid=1158055303852&col=1158055303864
Brookfield Programs Presents
Introduction to Direct Instruction and Reading Mastery 1:
For Children with Diverse Learning Needs including Autism
Saturday, July 21, 2007
9:30 a.m. to 4:00 p.m.
A workshop with Donna Heughan
Direct Instruction Specialist, Brookfield Programs
Registration is limited to allow for questions & practice
Cost: $100.00 + $6.00 GST = $106.00)
(30 minute lunch on your own)
This workshop provides an overview to “Direct Instruction” and focuses on “Reading Mastery 1” (the basis for “Teach Your Child to Read in 100 Easy Lessons”) a beginning reading program that teaches students who are not yet readers to identify letter sounds, orally segment words into sounds, and blend sounds into words. Participants will acquire the basic information and skills needed to implement the program, as well as strategies on how to effectively engineer the program for children with autism including analysis of student learning profiles, identifying generalizable patterns, and creation of appropriate scaffolding.
The workshop provides an:
1. Overview of Direct Instruction (DI)
 Instructional Design Features
 Instructional Delivery
– Learning Paradigm
– Signals /Pacing and Criterion Teaching
2. Introduction to Reading Mastery 1
 Overview of Major Components
 Materials /Scope & Sequence
 Successful Implementation
– Instructional Tracks & Formats
– Demonstrate/ Practice without errors and with errors with Correction Procedures
The workshop is designed for parents, ABA instructors, educators and other interested individuals
To Register
Send Cheque Payable to Brookfield Programs to our office or to pay by Credit Card contact us at 416-915-5550 or email donna@brookfieldprograms.com
Workshop Location – Brookfield Programs
419 Jane Street, Toronto ON, Canada M6S 3Z7
(4 blocks north of Bloor Street in Bloor West Village)
(Cancellation policy – no refunds after July 16, 2007)
Brookfield Programs provides services and programs including ABA, Verbal Behaviour, Fluency-Based Instruction, Relationship Development Intervention and Direct Instruction for children, teens and adults with autism, PDD-NOS, Asperger's disorder and other learning and communication disorders
Donna Heughan,
CEO, Brookfield Programs
donna@brookfieldprograms.com
www.BrookfieldPrograms.com
un 18, 2007 04:30 AM
Autism is the most common developmental disorder affecting children, with as many as one in 160 children struggling under its limitations. A neurological condition that can result in a wide spectrum of behaviours and problems, its cause remains wrapped in mystery.
Autism is also, unfortunately for the children afflicted with it and for their families, one of the most expensive conditions to treat. There are families spending as much as $80,000 a year, Wendy Roberts, head of the autism research unit at Toronto's Hospital for Sick Children, told a Toronto newspaper.
Is this fair? Therapy exists that in some cases can make the difference between a life governed by a severe disorder and a life in which near-normalcy can be reached. Families of autistic children have sued to try to get government funding for therapy.
A group of 28 families in Ontario was rebuffed by the Supreme Court of Canada. The Supreme Court likewise rejected in 2004 a suit by British Columbia families, ruling it is up to legislatures to determine the level of medical funding.
So families are, understandably, trying to mobilize public opinion. This week, Canadian comedian Eugene Levy was drafted into service, telling the CBC "families with autistic kids have the same rights as everybody else. Treatment has to be covered the way it's covered for any other debilitating disease."
As tempting as it is to agree, it is not correct that all medical treatments, regardless of cost, are covered under medicare.
But if legislators and officials have made the heart-wrenching decision not to fund maximum treatment, they could at least put more money into research. Levy was right to criticize Canada's research shortfall.
Last year, prominent researcher Dr. Peter Szatmari said that since 2000 Canada has spent a mere $16 million researching autism. The United States, in contrast, plans to spend $200 million in one year to set up centres of excellence to study autism.
Senator Jim Munson argued this week that not treating the disorder as well as we can costs the Canadian economy $3.5 billion a year, including group homes, respite care, and institutional care.
Nothing is sadder than having to choose between patients. Of course, parents will fight for their children.
But it is up to legislatures to make the hard choices. That's what they're there for.
BC-JUNE 21

** Protein mutations link to autism **
Scientists have discovered how mutations in two key proteins may lead
to autism.
< http://news.bbc.co.uk/go/em/fr/-/2/hi/health/6221064.stm >




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Kids at risk of 'falling through cracks'; B.C. watchdog finds treatment shortcomings
The Vancouver Province
Jun 22, 2007
Page: A28
Section: News
Edition: Final
Byline: John Bermingham
Acting auditor-general Errol Price says it's possible kids with mental illness are falling between the cracks when it comes to treatment.
In a report on the government's child and youth mental health plan, Price found shortcomings in the treatment of so-called "dual diagnosis" kids, those who suffer both mental and learning disorders.
Price found a lack of consistency in services to dual-diagnosis kids.
"Are they taken into the program, or are they told, 'Look, we really can't deal with autism,' or, 'We can't deal with fetal alcohol syndrome,' " Price told The Province yesterday.
"There's a risk of people falling through the cracks."
Price said family doctors and psychiatrists need to know exactly where to refer kids needing clinical help.
Children's Minister Tom Christensen said he's working on improving services to dual-diagnosis kids. Training for clinicians in dual diagnosis detection is set for next spring.
Of the estimated 140,000 kids and youth with mental-health problems, only 20,000 are getting treatment, including thousands in government care.
"Over the past three years, we've almost doubled the number that are being served," he said.
Last year, provincial health officer Perry Kendall found higher incidents of mental illness among 9,000 children in care.
NDP children's critic Maurine Karagianis said the government doesn't have performance measures to tell the public whether it is successful or not.
"They're big on promises and short on substance, and really poor at measuring outcomes at the end of the day," she said.
The ministry is spending $85 million this year on mental- health services for kids.
jbermingham@png.canwest.com
________________________
Une Maison de l'autisme sera construite à Blainville
La Tribune

Jun 23, 2007
Page: E5
Section: Carrières formation
La Fondation Autisme Laurentides annonçait récemment la construction d'une autre Maison de l'autisme dans les Laurentides, cette fois-ci dans la MRC de Thérèse-de-Blainville. Cette réalisation est rendue possible grâce à la contribution de la Ville de Blainville qui a offert le terrain et grâce aux fonds récoltés lors du Grand McDon organisé le 9 mai dernier dans cinq restaurants McDonald's de la région. Cette initiative a permis d'amasser des dons d'une valeur totale de 112 749 $ (incluant des matériaux et de la main-d'oeuvre). Le coût du projet est évalué à 290 000 $ et la construction devrait débuter à la mi-juin. Seize familles pourront profiter des nouveaux services à partir de septembre 2007, et l'on prévoit organiser un camp de vacances à l'été 2008.
Le Babillard est un service de Septembre éditeur diffusé dans www.monemploi.com.
__________________________
PEOPLE MAGAZINE NOTE:


The current issue of PEOPLE magazine has an article on the Cedillo family and Vaccine Court. Although I have not yet read the article I have been told it is a fair article on Michelle's health. There are several mentions from physicians that there is.....no link.... Otherwise a good read.


Neurological conditions cost Canada nearly $9B a year: report
Last Updated: Friday, June 22, 2007 | 5:02 PM ET
CBC News
Neurological conditions such as stroke and Alzheimer's disease cost Canada nearly $9 billion a year, say neurologists, who warn that the health-care system may not be able to handle the increased burden of an aging population.
Early diagnosis of neurological diseases will help reduce long-term costs, says Dr. Charles Tator.
(CBC)
Friday's report from the Canadian Institute for Health Information, titled The Burden of Neurological Diseases, Disorders and Injuries in Canada, is a consensus report by neurologists who tallied the costs of 11 conditions they treat:
• Alzheimer's disease
• Amyotrophic lateral sclerosis (Lou Gehrig's disease)
• Brain tumours
• Cerebral palsy
• Epilepsy
• Head injury
• Headaches
• Multiple sclerosis
• Parkinson's disease
• Spinal injuries
• Stroke
The conditions represent almost seven per cent of the total attributable cost of illness in Canada in 2000-01, according to the Public Health Agency of Canada.
Stroke Guide for Caregivers
Stroke Recovery Canada has produced a guide to help stroke survivors and their caregivers and families reclaim as much of their lives and independence as possible.
More than half of the estimated 40,000 to 50,000 Canadians who will have a stroke this year will return home and need some help to perform basic functions.
The guide provides information on:
• Personal stories of caregivers
• Overcoming depression for patients and caregivers
• Motivation
• Intimacy
• Treatment options
• Reducing spasticity — muscles involuntarily seizing up by contracting and becoming tense when they shouldn't, resulting in stiffness, rigidity and muscle pain that makes it difficult to perform activities of daily life
• Physical and occupational therapy to help improve mobility and reduce spasticity and find solutions for daily living
• Nutrition
Stroke accounts for 29 per cent of the $8.8 billion in direct costs from neurological conditions, followed by Alzheimer's at 19 per cent, then migraine and cluster headaches at close to 18 per cent. The costs were calculated for rehabilitation, drugs and lost productivity, according to the report.
More emphasis should be placed on providing support for patients with chronic, disabling neurological diseases and for their caregivers, said Dr. Garth Bray, vice-president of the Canadian Neurological Science Foundation.
The neurologists called for new priorities in health care, saying billions could be saved through earlier diagnoses, stroke prevention programs and Alzheimer's research.
"Early diagnosis will lead to reduction of disability and reduction of long-term costs," said Dr. Charles Tator, who heads the Canadian Brain & Nerve Health Coalition in Edmonton.
Missy Mandel of Toronto is a case in point. Five years ago, at age 36, Mandel had to give up her job teaching elementary school after a tumour was found on her spine at the base of her brain. It could have led to paralysis from the neck down.
An MRI helped to detect a tumour on Missy Mandel's spine.
(CBC)
"The first thing I thought about was, who was going to walk my kids to school, who was going to get up and prepare their breakfast?" Mandel recalled.
Mandel now walks dogs for a living. She was diagnosed early, so the long-term damage was far less than it is for many others.
Mandel said she sees the financial burden that neurological conditions place on the health-care system, patients and families who cannot afford medication or proper treatment.
While her life has changed, Mandel said she is far better off than she would have been had she not been diagnosed early. She could have been paralyzed and on a respirator for the rest of her life.
Head Lines The Genetic Roots of Autism- scientific mind
June 2007 issue
http://www.sciammind.com/article.cfm?articleID=DDCDAC7B-E7F2-99DF-35CA7F1BF4FAE560
Many studies have traced the history of families with more than one autistic member, but few scientists have attempted to crack the code of sporadic autism—which arises unexpectedly in a formerly unaffected lineage and is more common than inherited autism. Now a group at Cold Spring Harbor Laboratory believes it has found a distinct mechanism by which autism can strike sporadically.





Sent: Tuesday, June 26, 2007 3:40 PM
Subject: UCLA study shows Autistic Brain can be trained....

UCLA Study First to Show
Autistic Brains Can Be Trained
to Recognize Visual and Vocal
Cues
Updated: 6/24/2007 12:06:03 PM
(HealthNewsDigest.com) - To understand the meaning of a conversation, kids automatically do what adults
do ---besides processing the meaning of words, they unconsciously "read" the expression on a person's face
and listen to their tone of voice, then integrate that information with the context at hand to discern
meaning, be it humor, anger, irony or straightforwardness.
Individuals with autism typically don't do this. They often miss the subtle meanings conveyed by a person's
face and tone of voice, and thus have trouble determining the communicative intent of others.
Neuroimaging studies have backed this up, showing that individuals with autism spectrum disorders
(ASDs) --- including autism, pervasive developmental disorder and Asperger's syndrome --- show reduced
activity in the regions of the brain that respond to such cues.
But what if those brain regions could be trained to respond appropriately? In a report in the current issue of
the journal Archives of General Psychiatry and currently online, UCLA researchers did just that. Providing
ASD children with explicit instructions to pay more attention to facial expressions and tone of voice
elicited an increased response in the medial prefrontal cortex, part of the brain's network for understanding
the intentions of others.
"That's significant. The fact that you can 'normalize' activity in this region in the ASD group by directing
their attention to these important social cues clearly indicates there's nothing intrinsically wrong with this
region in the autistic brain," said Mirella Dapretto, associate professor of psychiatry and biobehavioral
sciences at the Semel Institute for Neuroscience and Human Behavior at UCLA and a member of the
UCLA Ahmanson-Lovelace Brain Mapping Center. Dapretto co-authored the study with her former
graduate student Ting Wang, who is now a postdoctoral fellow at Mount Sinai School of Medicine.
"This is a very positive thing," Dapretto said, "because these findings have implications for future
interventions --- they suggest that you could train the autistic brain to make use of the information
conveyed by the human face and voice to successfully navigate social interactions."
Autism is a complex neurobiological disorder of development that affects one of every 150 children,
impairing communication and social skills. ASDs encompass a broad spectrum of disorders that range
from mild to severe.
The authors had two goals in mind with their study. One was to examine the neural circuitry in the brain
that underlies the problems ASD children face in interpreting communicative intent. The other was to
determine whether explicit instructions to pay attention to facial expressions and tone of voice would elicit
more normal patterns of brain activity in these children.
While undergoing functional magnetic resonance imaging (fMRI), 18 ASD boys between the ages of 7 and
17, as well as a control group of 18 typically developing (TD) boys, viewed cartoon drawings of children
in conversational settings while listening to short vignettes that ended with a potentially ironic remark.
Researchers found that, compared with the TD control group, the ASD children had reduced activity in two
areas of the brain --- the medial prefrontal cortex and right superior temporal gyrus. But when the
researchers gave both groups explicit instructions to pay attention to the speaker's facial expression and
tone of voice, only the ASD children showed a significant increase in activity in the medial prefrontal
cortex.
"The typically developing kids recognized and interpreted these cues automatically when trying to infer if a
speaker's remark was sincere or sarcastic, so their brains were already responding appropriately," said
Dapretto. "But not so with the ASD kids, who did not show activity in this area when specific instructions
weren't provided. This is the first study to show that you can normalize activity in a key region of the socalled
'social brain' in individuals with autism by simply directing their attention to these important social
cues."
Other authors of the study included Susan S. Lee and Marian Sigman. The research was funded by the
National Alliance for Autism Research, the Cure Autism Now Foundation, the UC Davis M.I.N.D.
Institute, and grants from the National Institute of Child Health and Human Development and the National
Institute on Deafness and Other Communication Disorders.
The Semel Institute for Neuroscience and Human Behavior at UCLA is an interdisciplinary research and
education institute devoted to the understanding of complex human behavior, including the genetic,
biological, behavioral and sociocultural underpinnings of normal behavior and the causes and
consequences of neuropsychiatric disorders. In addition to conducting fundamental research, the institute
faculty seeks to develop effective treatments for neurological and psychiatric disorders, improve access to
mental health services and shape national health policy regarding neuropsychiatric disorders.
www.HealthNewsDigest.com
August 8, 2007: Blue Jays - Autism Awareness Night





Toronto Blue Jays vs the New York Yankees

Join us on August 8 at Rogers Centre for Autism Awareness Night. It is a game you don't want to miss!

Buy your tickets now. Please click here to download the ticket order form.

If you have any questions, please call (416) 246-9592 ext. 224 or send email to ethel@autismontario.com.


US Government Asks Court to Seal Vaccine Records
Reuters Health - Attorneys for the Bush Administration asked a federal court on Monday to order that documents on hundreds of cases of autism allegedly caused by childhood vaccines be kept from the public.

Department of Justice lawyers asked a special master in the US Court of Federal Claims to seal the documents, arguing that allowing their automatic disclosure would take away the right of federal agencies to decide when and how the material should be released.

Attorneys for the families of hundreds of autistic children charged that the government was trying to keep the information out of civil courts, where juries might be convinced to award large judgments against vaccine manufacturers.

The court is currently hearing approximately 1,000 claims brought by the families of autistic children. The suits charge that the measles-mumps-rubella (MMR) vaccine, which until recently included a mercury-containing preservative known as thimerosal, can cause neurological damage leading to autism.

Federal law requires suits against vaccine makers to go before a special federal "vaccine court" before any civil lawsuit is allowed. The court was set up by Congress to speed compensation claims and to help protect vaccine makers from having to pay large punitive awards decided byjuries in state civil courts. Plaintiffs are free to take their cases to state courts if they lose in the federal vaccine court or if they don't accept the court's judgment.

The current 1,000 or so autism cases are unusual for the court.
Because it received so many claims, much of the fact-finding and
evidence-gathering is going on for all of the cases as a block.
Monday's request by the Bush Administration would prevent plaintiffs
who later go to civil court from using some relevant evidence generated
during the required vaccine court proceedings.

Plaintiffs' attorneys said that the order amounted to punishment of
the families of injured children because it would require them to incur
the time and expense of regenerating evidence for a civil suit.
"Wouldn't it be a shame if at the end of the day our policy would be
to compensate lawyers," said Jeff Kim, an attorney with Gallagher Boland
Meiburger & Brosnan. The firm represents about 400 families of autistic
children who received the MMR vaccine.

Kim accused the government of trying to lower "a shroud of secrecy
over these documents" in order to protect vaccine manufacturers, who he
said were "the only entities" that would benefit if the documents are sealed.
While federal law clearly seals most documents generated in
individual vaccine cases, it has never been applied to a block proceeding like the one generating evidence in the autism cases.

Administration lawyers told Special Master George Hastings that they
requested the seal in order to preserve the legal right of the Secretary
of Health and Human Services to decide when vaccine evidence can be released
to the public.

Justice Department attorney Vincent Matanoski argued that to let
plaintiffs use the vaccine court evidence in a later civil suit would
confer an advantage on plaintiffs who chose to forgo federal compensation.

"There is no secret here. What the petitioners are arguing for are
enhanced rights in a subsequent civil action," Matanoski said of the
plaintiffs. "They're still going to have unfettered use within the proceedings."

Hastings would not say when he would issue a ruling on whether to
seal the court documents, but did say that his decision would be "very prompt."



Autism Today is proud to be the first comprehensive online directory (established in 1998) of programs and services offering easy to locate professionals, schools, camps, recreational programs, and much more in one convenient place. Press here to access the online directory.



Hello,
Many of you may have read an article in the Kitchener Waterloo Record (which I've attached below) that gives the impression the Liberals may be looking at IBI in schools, as their response to the AFA debate questions imply.
However, it is very clear that this is not what school boards, Directors of Education, etc., are being told.
Please find attached a March 1, 2007, letter from the Deputy Minister of Education Ben Levin where he clearly states that the Ministry's focus "will be ABA teaching practices and not IBI."
It appears that the Liberals are saying one thing to parents of children with autism and hoping at the same time that parents will not find out what the Minister of Education Kathleen Wynne is really doing.
Thank you.
Dan O'Brien
Executive Assistant
Office of Shelley Martel
MPP for Nickel Belt and
NDP Critic for Health and Long-Term Care
(416) 325-2507 (w)
(416) 648-9054 (c)
obriend@ndp.on.ca
<<07-03-01 Memo - Min Ed - ABA in Schools.doc>>
Legislative Library Heading - Disabled, Education , Elementary & Secondary
Education system grapples with schools' role in therapy
The Record, Kitchener-Waterloo (Kitchener, Cambridge and Waterloo)
Mon 25 Jun 2007 - Life - D2
KAREN KAWAWADA
After Education Minister Kathleen Wynne announced more support for students with autism in February, Edwina Bell started getting calls from parents who thought the government was going to provide intensive behavioural intervention in schools.
That's not happening, said the Waterloo Region District School Board senior principal of special education.
Intensive behavioural intervention (IBI) is an intensive program of therapy designed for children with moderate to severe forms of autism.
Children receive the therapy one-on-one for 20 to 40 hours a week, usually at home, with a trained therapist overseen by a behavioural psychologist.
The long hours of therapy mean kindergarten-aged children receiving it often don't go to school. Older children might go to school only part time.
Some autism advocacy groups have been lobbying the province to provide the therapy in schools.
The groups have already scored some partial victories.
In 2005, a year and a half after they promised it, the Liberal government stopped the province's old practice of kicking kids out of therapy when they turned six .
The Liberals have doubled funding for autism since they came into power in 2003, and now more than 1,100 children receive the intensive therapy.
However, that still leaves more than 1,000 families on the waiting list.
Some aren't waiting and are paying for the therapy privately.
Keegan Gardner's family is one of them.
It costs $35 an hour but "it's worth every penny," said Keegan's mother, Brenda Murray.
Murray can only afford nine hours a week, but it still helps, she said.
"In the last year and a half (since he started therapy), he has started to talk a lot more. He finally wants to be with us a lot more; before that, it was just the computer, the computer. . . . Now he can say, 'Hi, Grandpa. Hi, Grandma.'"
Murray is also happy with Keegan's progress at Prueter Public School in Kitchener, where he's in a special class for kids with autism. Teacher Wendy Johnston is great, Murray said.
Still, it would be even better if Keegan could get intensive behavioural intervention at school, Murray said.
"If it could be done every day for the time they're in the classroom, it would be wonderful. . . . The more the kids have it repeated, the more it sinks in."
The idea has some political support. When the Alliance for Families with Autism recently invited the provincial parties to answer a questionnaire, the New Democrats and Conservatives said they'd provide intensive behavioural intervention in schools.
But Bell said it wouldn't work.
"Many of our schools won't have a private space for a therapist to work with a child. . . . Another issue is contractual. We don't hire IBI therapists, so who would hire them?"
If children get even 20 hours of therapy a week, they would have to be pulled out of class the majority of the time they're in school, added Bell.
The therapy is too intrusive for teachers to use in class, said Bernie Kowalczyk, the Waterloo Catholic District School Board superintendent responsible for special education.
Kowalczyk role-played with a staff member to demonstrate.
"Look at me," she said, but other woman looked away.
Kowalczyk reached out, grabbed her chin and forcibly turned her head around until their eyes met. "Look at me," she repeated.
The Ministry of Education has directed boards to provide applied behaviour analysis, not intensive behavioural intervention, Kowalczyk said.
Applied behaviour analysis, or ABA, is a set of teaching methods that don't constitute an intensive therapy.
The province has pledged to pay for extra training for teachers, educational assistants, principals and other staff.
Both local boards already have people trained in applied behaviour analysis, but more could use training, particularly teachers with autistic kids integrated into a regular class, said Bell.
Bell said the public board has been told it will be able to send up to 12 principals to a one-day training session in August. Up to 12 other staffers can go to London for a webcast of a four-day workshop being held in Toronto.
Last fall, educational assistants received some introductory training, and they will now have an opportunity to take online courses, Bell said.
Both boards expect to do more training throughout the next school year but don't yet have more details.
Will things be much different for kids with autism in local schools?
"Not in September," said Catholic board special-education resource teacher Jenn George.
Even longer term there won't be many changes in classes such as Johnston's, where the teacher already uses applied behaviour analysis.
But as more educators get trained, parents of kids with autism will notice differences, said Kowalczyk.
"These are behavioural methods we've used but not in their entirety or as well as we could. That's where our capacity building comes in."
Pat La Londe, a founding member of the Alliance for Families with Autism, said she welcomes what the government is doing now as "a step in the right direction," but she hopes therapy in schools is the next step.
The Liberals may have that in mind, she said. The party's response to her group's questions included the line:
"We will continue to work in collaboration with our partners to implement ABA in schools, including intensive ABA, such as Intensive Behavioural Intervention (IBI)."
"Whoever takes government in the fall, I'm hopeful they'll continue on the positive road with the kids," said La Londe.
kkawawada@therecord.com
ILLUSTRATION:: : Photo: NICK IWANYSHYN, RECORD STAFF / Keegan Gardner, 7, concentrates on a computer program as part of his class work at Prueter Public School in Kitchener. ;
SOURCE RECORD STAFF
Legislative Library - Ontario Press Highlights






Sharon is one of our listmates, she helped develop and teaches at Seneca College in the IT program. An amazing woman and advocate for our kids needs.

When we vote for Sharon, and she wins, we are ensuring further resources for ourselves!!!!! Check out her website at www.abaresources.com

Nancy


----- Original Message -----
From: Sharon Gabison
To: Sharon Gabison


Hi guys

I am sending this to my friends, family and colleagues to ask them for their support. I am trying to win a business package from Today's parent ("Mompreneur of the the year award") to help improve my existing business, ABA Educational Resources Ltd. I have the option of winning an $18 000 package to help with business development. All that is needed is votes from friends and family. The person with the most votes wins. Please please please consider voting for me. Voting is simple and can be done online with the click of one button. Here is the link www.mompreneuraward.com All you need to do is look for my business "ABA Educational Resources Ltd." and click the vote for me!!!! The winner is selected strictly on the greatest number of votes. Please consider passing this on to anyone who you think would be willing to help.

Take care and thanks so much!!!!!

Sharon


Folks,
The author of the article is one of the most famous former civil servants in Ottawa....Sponsorsphipgate "whistleblower" Allan Cutler. Mr. Cutler is increasingly recognized as a leading authority on "ethics" and a frequent contributor to the papers. See his website at: http://ascutler.com/
Thank you Allan!
___________________________________________________________________________________

Autistic kids deserve better There was nothing preventing McGuinty from honouring his promise to autistic kids
The Ottawa Sun

Jun 27, 2007
Section: Editorial/Opinion
Page: 15
By: ALLAN CUTLER
Autism affects all of us. Any family can have an autistic child.
Intensive Behaviour Intervention (IBI) treatment offers hope for recovery to about half of autistic children. The earlier the treatment, the better the odds. If treatment continues for years, there is every hope the child can be integrated into mainstream society. You would be unable to tell if the child was autistic.
This should be a simple decision. Pay now and have children recover; or pay later, supporting them throughout their life. With IBI, half of autistic children have the chance to become taxpayers, instead of becoming dependent on them. The decision should be obvious.
But nothing is obvious when politics are involved. Politicians rarely think or realistically plan beyond getting re-elected.
The Harris Conservative government started the Ontario Autism Program in 1999, allowing for treatment only to age six. Parents protested and launched a lawsuit. The decision did not change. When autistic children turned six, the system effectively abandoned them.
OPENINGS TOO LATE
This program had many problems. It took a long time to get a diagnosis. There was a long waiting list to get into the program. For many children, openings came too late.
Andrew Kavchak's autistic son, Steven, waited more than a year for a diagnosis and another 15 months before receiving assistance to pay for treatment in the private sector.
Unlike many parents, Kavchak and his wife, Sylvie Del Bianco, were able to afford treatment. Del Bianco, a medical doctor, had to choose between taking care of her son or pursuing a career. The result was one less doctor to look after patients in an overworked health care system.
Prior to the 2003 election, Dalton McGuinty wrote Nancy Morrison -- a mother of an autistic child -- saying he believed the practice of cutting off children at age six was discrimination.
McGuinty promised (sound familiar?) that if he was elected, he would stop this practice. The letter was widely circulated and the promise secured many Liberal votes.
The lawsuit was based on the principle that the cutoff was age-based discrimination. In 2003, the parents won. By this time, McGuinty was premier.
There are two issues -- legal and ethical.
Legal issues are important and the Liberal government had every right to continue to clarify the legal status. Clarity could become important in the future.
The legal case went through many levels, ending with an Ontario Court of Appeal ruling that regardless of any discrimination, all decisions about spending money were up to the Legislature. The Supreme Court denied leave to appeal.
In 2003, there was nothing preventing McGuinty from honouring his promise to Morrison. Policy decisions do not have to wait for legal clarifications. They can proceed separately.
In 2004, more money was allocated, but it was only in 2005 that some children could stay in the treatment program.
In this election year, we need to vote in a government truly committed to helping autistic children. We need a government that will keep its promises.

End of articles mailing for June 28, 2007

Autism News Articles June 28-July 13th 2007

Autism News Articles
Mailings
June 28th 2007-July 13th, 2007


IMPORTANT ANNOUNCEMENT

attention: Parents who have home-based ABA program
Are you looking to hire students to be part of your clinical team? ABACUS has a number of students listed as “Do” providers. Visit ABACUS and click on “Search for Providers”.
www.abacuslist.ca
And

Summer Camp Relief for Parents
Toronto, July 10, 2007 — At least 647 Ontario children with autism will now be able to attend summer camp.

This morning, Honourable Mary Anne Chambers, Minister of Children and Youth Services announced a total investment of $535,000 to subsidize camp programs and to assist families in paying for one-to-one workers who support their children with Autism Spectrum Disorder (ASD) to participate in summer camp programs in communities across Ontario .

Autism Ontario Chapters Will Receive Subsidies To Support Their Established Camp Programs
This summer has been particularly difficult for parents in the Dufferin, Hamilton , Niagara Region, Sarnia , and York Region chapters. While each chapter and its many volunteers work the entire year to raise the necessary funds to operate their summer camps, shortfalls in donations from federal contributions and corporate donations were leading to cutbacks in the number of children that could be served.

For example, Autism Ontario-York Region Chapter’s Camp AOK was planning to greatly reduce the number of children with autism that it could serve.

Paul Kalmykow, Camp AOK Committee Coordinator, said “The shortfalls were leaving us with very few options. For the first time in the program’s 20 years, we were considering cancelling services altogether.”

Upon hearing the news of the subsidy for their Niagara Region Camp Program, Mike Gowan, parent and Niagara Region Chapter President, said, “Last summer we offered placements for 30 children in our summer camps, this year the demand is for 72. This was stretching our budget beyond its limit. With this extra money, we will be able to continue to offer very specialized programs to Niagara ’s children with ASD that desperately need summer learning services.”

Subsidies for an Additional 500 Children
In addition to the funding for the six Autism Ontario camp programs, at least 500 Ontario families with a child attending a community summer camp program may apply for reimbursement of up to $585 per child. Reimbursements will be given specifically to pay for one-to-one support workers hired to accompany their child with ASD to a community summer program.

“I have had so many families tell me that while they can often afford the camp fees, paying for a one-to-one support worker for their child is simply prohibitive,” said Deborah Kitchen, parent and Autism Ontario President.

“Without a worker, it is impossible for most children with autism to attend an integrated camp setting and to have a safe and positive learning experience. More often than not, many of our kids end up missing out on social learning from camp experiences because of these extra costs,” Kitchen added.

PARENT INFORMATION
Parents interested in learning more about the 2007 Summer Camp for Children with Autism should visit www.autismontario.com/summercamp program and application details.

Minister of Children & Youth Services, Mary Anne Chambers Leaving Politics
Autism Ontario would like to thank Minister Chambers for her efforts on behalf of children and youth with Autism Spectrum Disorders.
The Toronto Star article about her decision not to run in the upcoming election is here: http://www.thestar.com/article/234628




From a listmate:
Reversal of autism gene first step towards cure; MIT breakthrough with mice counteracts the Fragile X syndrome that weakens the brain's electrical signals
The Edmonton Journal

Jun 28, 2007
Page: A19
Section: Body & Health
Edition: Final
Dateline: WASHINGTON, D.C.
WASHINGTON, D.C. - Researchers say they have partially reversed in mice a common cause of autism and mental retardation, and that it might be possible to design a drug that would do the same thing for people.
They found that by blocking a normal enzyme, they could reverse some of the brain abnormalities associated with the inherited condition, called Fragile X syndrome, and correct some of the symptoms in the mice.
"This is the first case where the reversal of Fragile X syndrome (has been) demonstrated in the animal model, not only at the level of behaviour but also in the underlying cellular mechanisms," said Susumu Tonegawa, the Massachusetts Institute of Technology head researcher.
Fragile X syndrome is the most common hereditary cause of mental retardation and autism. The one in 4,000 boys and one in 6,000 girls who are affected often have developmental delays and hyperactivity, and engage in aimless, repetitive behaviours.
It is caused by a mutated gene on the X chromosome that affects dendritic spines -- the long, thin structures that allow brain cells to communicate with each other. They become too numerous, as well as too long and thin, weakening these electrical signals.
"This has been thought to be the major underlying reason why these patients show behavioural abnormalities," said Tonegawa, who worked with researchers in India and South Korea.
The researchers noticed that when they blocked the action of another nerve cell-shaping enzyme called P21-activated kinase, or PAK, in the brains of otherwise normal mice, they could produce the opposite effect: the dendritic spines in these mice were short and thick, and fewer were formed.
The mice also had abnormally low levels of electrical signalling, according to the report, published in this week's issue of the Proceedings of the National Academy of Sciences.
So the scientists bred mice with both the Fragile X gene mutation and a version of PAK that was programmed to fail.
This inactive form of PAK only kicked in a month after the mice were born. And once it did, the researchers found that symptoms of Fragile X, which include excessive movement and difficulty completing memory tasks, were greatly reduced in the mice.
When they looked at their brains, the dendritic spines looked fairly normal.
While such genetic manipulation would be difficult to recreate in human children, a chemical compound that can directly inhibit the protein may make an effective drug, Tonegawa said.
___________________________
Scientists Reverse Symptoms of Autism in Mice
Inhibiting brain enzyme might ease behavioral problems as well
URL of this page: http://www.nlm.nih.gov/medlineplus/news/fullstory_51364.html (*this news item will not be available after 09/23/2007)
HealthDay
Krisha McCoy
Monday, June 25, 2007
MONDAY, June 25 (HealthDay News) -- Scientists may have uncovered a way to reverse symptoms of mental retardation and autism in mice.
Researchers from the Picower Institute for Learning and Memory at Massachusetts Institute of Technology (MIT) genetically manipulated the mice to model Fragile X Syndrome (FXS), which is the leading inherited cause of mental retardation and the most common genetic cause of autism.
FXS is tied to a mutated X chromosome gene called the fragile X mental retardation 1 (FMR1) gene. When this gene is mutated, it can cause mild learning disabilities to severe autism.
"Our study suggests that inhibiting a certain enzyme in the brain could be an effective therapy for countering the debilitating symptoms of FXS in children, and possibly in autistic kids as well," study co-author Mansuo L. Hayashi, a former Picower Institute postdoctoral fellow currently at Merck Research Laboratories in Boston , said in a prepared statement.
The enzyme that was inhibited in this study is called p21-activated kinase, or PAK, and it affects the number, size and shape of connections between neurons and the brain.
When PAK's activity was halted, the brain abnormalities in the FXS mice were reversed.
"Strikingly, PAK inhibition also restored electrical communication between neurons in the brains of the FXS mice, correcting their behavioral abnormalities in the process," co-author Susumu Tonegawa, 1987 Nobel laureate and Picower Professor of Biology and Neuroscience, said in a prepared statement.
Tonegawa said that there are known chemical compounds that can inhibit the activity of PAK, which is something that may be useful in developing drugs to treat FXS.
The FXS mice showed abnormalities similar to those in FXS patients, including hyperactivity, purposelessness, repetitive movements, attention deficits, and difficulty with learning and memory.
When the activity of PAK was inhibited, these abnormalities were partially or fully ameliorated.
"Notably, due to an elegant genetic manipulation of method employed by the Picower Institute researchers, PAK inhibition in the FXS mice did not take place until a few weeks after appearance of disease symptoms. This implies that future treatment may still be effective even after symptoms are already pronounced," Tonegawa said.
The findings were reported in the June 25-29 online early edition of the Proceedings of the National Academy of Sciences.



Rights panel rejects disabled support questionnaire; Three-member panel agrees with parents that system favours physically challenged over mentally challenged
The Guardian(Charlottetown)
Jun 28, 2007

Page: A3
Section: Provincial
Byline: Ron Ryder
The system set up to award aid to disabled Islanders favours the physically challenged over the mentally challenged, a human rights panel has ruled.
In a decision made public Wednesday, a three-member panel of the Human Rights Commission agreed with parents that the functional independence measurement (FIM) questionnaire used by the Disability Support Program had the effect of making more aid available to claimants whose disabilities are physical.
Four families of disabled persons filed rights complaints alleging discrimination by the program set up to provide families with financial assistance in dealing with disabilities.
The panel held up a second ground of appeal, saying that it was unfair to test the means of families of disabled minors before determining how much assistance to give them.
The panel discarded a third avenue appeal, saying that the DSP's monthly funding ceilings and lifetime limits on certain services were not a form of discrimination because they were evenly applied. The panel's rejection of the FIM questionnaire goes to the heart of the Island's disability supports.
DSP workers use the 18-question questionnaire to assess the level of assistance someone can claim, award a numerical score from one to seven for each question and use that to set a limit on how much support one person can receive. Depending on the score, a person can get $300, $700, $1,500 or $3,000 in support per month.
But panelists found that since 13 questions focused on physical disabilities and just five focused on cognitive challenges, it favoured one group over the other, especially in cases where someone was severely disabled in one sphere but not the other.
"The 38 per cent level of functioning would entitle the most highly physically disabled person to a maximum monthly support of $1,500," they wrote in their decision.
"The 76 per cent level of functioning would entitle the most highly mentally disabled person to a maximum monthly support of $300."
Carolyn Bateman, whose 25-year-old son Adam has both mental and physical challenges resulting from autism, said she was happy to see the DSP sent back for re-examination.
"My understanding is that once a program has been found to be discriminatory government has to stop," she said.
"Five years ago - as soon as they announced this program we could see the problems with it. It began when they were announcing the implementation plans but we've had deaf ears ever since then."
Bateman said the autism advocacy group Stars for Life is hopeful of meeting with Premier Robert Ghiz and Health Minister Doug Currie to discuss ways of improving services to the autistic and to families of disabled people generally.
"We made some progress today, it's a shame we couldn't have achieved the same thing by sitting around a conference table," she said. "Of course government could always appeal this and then we'd have to really consider what to do.
"Parents of disabled children work with them 24 hours a day. I think when someone is able to take on this fight, there are a lot of parents who say, 'Thank God because we just don't have the time or money'."
rryder@the guardian.pe.ca
______________________________________
P.E.I. tribunal rules disability funding program is discriminatory (PEI-Disabled-Ruling)
Canadian Press
Jun 27, 2007

CHARLOTTETOWN (CP) _ The system set up to award aid to disabled Islanders favours the physically challenged over the mentally challenged, a human rights panel has ruled.
In a decision made public Wednesday, a three-member panel of the Human Rights Commission agreed with parents that the functional independence measurement questionnaire used by the Disability Support Program had the effect of making more aid available to claimants whose disabilities are physical.
Four families of disabled persons filled rights complaints, alleging discrimination by the program set up to provide families with financial assistance in dealing with disabilities.
The panel also said it was unfair to test the means of families of disabled minors before determining how much assistance to give them.
The panel's rejection of the questionnaire goes to the heart of the Island's disability supports.
Program workers use the 18-question questionnaire to assess the level of assistance someone can claim, award a numerical score from one to seven for each question, and use that to set a limit on how much support one person can receive.
Depending on the score, a person can get $300, $700, $1,500 or $3,000 in support per month.
But panelists found that since 13 questions focused on physical disabilities and just five focused on cognitive challenges, it favoured one group over the other, especially in cases where someone was severely disabled in one sphere but not the other.
Carolyn Bateman, whose 25-year-old son Adam has both mental and physical challenges resulting from autism, said she was happy to see the program sent back for reexamination.
"My understanding is that once a program has been found to be discriminatory, government has to stop," she said.
"Five years ago _ as soon as they announced this program _ we could see the problems with it. It began when they were announcing the implementation plans but we've had deaf ears ever since then."
Bateman said the autism advocacy group Stars for Life is hopeful of meeting with Premier Robert Ghiz and Health Minister Doug Currie to discuss ways of improving services to the autistic and to families of disabled people generally.
"We made some progress today. It's a shame we couldn't have achieved the same thing by sitting around a conference table. Of course government could always appeal this and then we'd have to really consider what to do," she said.
(Charlottetown Guardian)
____________________________________
Wrestler Benoit and wife argued over son's care in days before killings: lawyer (Dead-Wrestler-Cda)

Jun 27, 2007
By Greg Bluestein
ATLANTA (AP) _ In the days before pro wrestler Chris Benoit killed his wife and child and hanged himself, the couple argued over whether he should stay home more to take care of their mentally handicapped seven-year-old son, a lawyer for the wrestling league said Wednesday.
``I think it's fair to say that the subject of caring for that child was part of what made their relationship complicated and difficult, and it's something they were both constantly struggling with,'' said Jerry McDevitt, a lawyer for World Wrestling Entertainment. ``We do know it was a source of stress and consternation.''
McDevitt said the wrestling organization learned from the couple's friends and relatives that the Benoits were struggling with where to send the boy to school since he had recently finished kindergarten.
He also said Benoit's wife didn't want him to quit wrestling, but she ``wanted him to be at home more to care for the kid. She'd say she can't take care of him by herself when he was on the road.''
The child suffered from a rare medical condition called Fragile X Syndrome, an inherited form of mental retardation often accompanied by autism, McDevitt said.
Over the past weekend, authorities said, Benoit strangled his wife, suffocated his son and placed a Bible next to their bodies before hanging himself with a weight-machine cable in the couple's suburban home. No motive was offered for the killings, which were discovered Monday.
Anabolic steroids were found in Benoit's home, leading officials to wonder whether the drugs played a role in the slayings. Some experts believe steroids cause paranoia, depression and violent outbursts known as ``roid rage.''
The WWE, based in Stamford, Conn., issued a news release Tuesday saying steroids ``were not and could not be related to the cause of death'' and that the findings indicate ``deliberation, not rage.'' It also added that Benoit tested negative April 10, the last time he was tested for drugs.
Also Wednesday, Benoit's personal physician said the wrestler did not give any indication he was troubled when he met with the doctor hours before the start of the weekend.
Benoit had been under the care of Dr. Phil Astin, a longtime friend, for treatment of low testosterone levels. Astin said the condition likely originated from previous steroid use.
Astin prescribed testosterone for Benoit in the past but would not say what, if any, medications he prescribed the day of their meeting.
``He was in my office on Friday to stop by just to see my staff,'' Astin said. ``He certainly didn't show any signs of any distress or rage or anything.''
``I'm still very surprised and shocked, especially with his child Daniel involved,'' Astin said. ``He worshipped his child.''
District Attorney Scott Ballard said the autopsy indicated that there were no bruise marks on the child's neck, so authorities are now assuming he could have been killed using a choke hold. ``It's a process of elimination,'' he said.
The Benoits' argument over their son was not the only friction in their marriage. Nancy Benoit had filed for a divorce in 2003, saying the couple's three-year marriage was irrevocably broken and alleging ``cruel treatment.'' She later dropped the complaint.
Meanwhile, authorities in Georgia were investigating a link between Benoit and a Florida business that may have supplied him with steroids.
Prosecutors in upstate New York who have been investigating the company's drug sales said Benoit received deliveries from Signature Pharmacy and MedXLife.com, which sold steroids, human growth hormone and testosterone on the Internet.
Six people, including two of the pharmacy's owners, have pleaded guilty in the investigation, and 20 more have been arrested, including doctors and pharmacists.
``That's something that sounds like we ought to be investigating,'' Ballard told the AP on Wednesday.
A lawyer for MedXLife co-owner Dr. Gary Brandwein scoffed at allegations that his client's company sold steroids to Benoit.
``I've only read that in the paper. I have no direct information about that whatsoever,'' Terence Kindlon said Wednesday, adding that prosecutors in Albany County, N.Y., were trying to ``distract everyone's attention from the fact that their case is disintegrating.''
Brandwein, 44, an osteopath from Boca Raton, Fla., has pleaded not guilty to six counts in New York state court related to the criminal sale of a controlled substance. He was accused of signing and sending prescriptions without ever seeing patients.
Telephone messages left for lawyers for Brian Schafler and Greg Trotta _ two other co-owners of MedXLife _ were not immediately returned Wednesday. The two men have pleaded guilty to felony third-degree diversion of prescription medications and prescriptions, admitting they helped get drugs in 2006 for customers in upstate New York who had no medical need for them.
McDevitt said the drugs found in Benoit's house were legitimately prescribed. ``There's no question, none of these drugs are out there, none of these drugs came from Internet pharmacies,'' he said.
In addition to causing paranoia and explosive outbursts, steroids can also contribute to deep depression, according to experts.
``Just as you have the extreme high of when you're on steroids, you can get the opposite,'' said Dr. Todd Schlifstein, a clinical assistant professor at the New York University School of Medicine. ``You can have a dramatic difference in mood swings. You can feel there's no hope, there's no future.''
____________________________
From a listmate
Autistic kids deserve better There was nothing preventing McGuinty from honouring his promise to autistic kids
The Ottawa Sun

Jun 27, 2007
Section: Editorial/Opinion
Page: 15
By: ALLAN CUTLER
Autism affects all of us. Any family can have an autistic child.
Intensive Behaviour Intervention (IBI) treatment offers hope for recovery to about half of autistic children. The earlier the treatment, the better the odds. If treatment continues for years, there is every hope the child can be integrated into mainstream society. You would be unable to tell if the child was autistic.
This should be a simple decision. Pay now and have children recover; or pay later, supporting them throughout their life. With IBI, half of autistic children have the chance to become taxpayers, instead of becoming dependent on them. The decision should be obvious.
But nothing is obvious when politics are involved. Politicians rarely think or realistically plan beyond getting re-elected.
The Harris Conservative government started the Ontario Autism Program in 1999, allowing for treatment only to age six. Parents protested and launched a lawsuit. The decision did not change. When autistic children turned six, the system effectively abandoned them.
OPENINGS TOO LATE
This program had many problems. It took a long time to get a diagnosis. There was a long waiting list to get into the program. For many children, openings came too late.
Andrew Kavchak's autistic son, Steven, waited more than a year for a diagnosis and another 15 months before receiving assistance to pay for treatment in the private sector.
Unlike many parents, Kavchak and his wife, Sylvie Del Bianco, were able to afford treatment. Del Bianco, a medical doctor, had to choose between taking care of her son or pursuing a career. The result was one less doctor to look after patients in an overworked health care system.
Prior to the 2003 election, Dalton McGuinty wrote Nancy Morrison -- a mother of an autistic child -- saying he believed the practice of cutting off children at age six was discrimination.
McGuinty promised (sound familiar?) that if he was elected, he would stop this practice. The letter was widely circulated and the promise secured many Liberal votes.
The lawsuit was based on the principle that the cutoff was age-based discrimination. In 2003, the parents won. By this time, McGuinty was premier.
There are two issues -- legal and ethical.
Legal issues are important and the Liberal government had every right to continue to clarify the legal status. Clarity could become important in the future.
The legal case went through many levels, ending with an Ontario Court of Appeal ruling that regardless of any discrimination, all decisions about spending money were up to the Legislature. The Supreme Court denied leave to appeal.
In 2003, there was nothing preventing McGuinty from honouring his promise to Morrison. Policy decisions do not have to wait for legal clarifications. They can proceed separately.
In 2004, more money was allocated, but it was only in 2005 that some children could stay in the treatment program.
In this election year, we need to vote in a government truly committed to helping autistic children. We need a government that will keep its promises.
_______________________________
Autism and early intervention: Michael's success story
By Mid-Coast Children's Services
ROCKLAND (June 28): Wanda Frost knew something was wrong. Her infant son wouldn't look at her the way her other children had when they were babies. He had few facial expressions and never said "dada" or "mama." When Michael was 13 months old, she brought him to Child Development Services.
Michael was diagnosed with autism, a complex developmental disability impacting development in the areas of social interaction and communication skills. Autism results from a neurological disorder that affects the normal functioning of the brain. Typically appearing during the first three years of life, autism often presents in infants with early symptoms that are considered red flags:
Does the baby respond to his or her name when called by the caregiver?
Does the young child engage in "joint attention"?
Near the end of the first year of life, most infants begin to join with their caregivers in looking at the same object or event. To aid in this process of "joint attention", typical infants begin to shift their gaze from toys to people, follow other's points, monitor the gaze of others, point to objects or events to share interest, and show toys to others.
Does the child imitate others?
Does the child respond emotionally to others?
(source: Exceptional Parent Magazine)
Michael was fortunate that his mother sought help early. Experts agree that early diagnosis and intervention is crucial: the sooner a child is diagnosed, the sooner he or she can begin to benefit from a specialized intervention program.
The Frosts were referred to Annie Kiermaier, a Licensed Clinical Social Worker with Mid-Coast Children's Services. Michael began an intensive program including a special play therapy known as "Theraplay," which helps parents and children build a strong attachment relationship.
"When I first met Mikey," says Kiermaier, "his mother and I both agreed that he seemed to feel 'miserable.' At just over a year old, he wandered around aimlessly at home, often with a bottle that he sucked for comfort. He rarely sought his mother out for comfort and did not seem to enjoy interacting with his family. He seemed to be 'in his own world.' But Mikey was lucky; he had a tough and determined mother who was willing to do whatever was needed to help him enjoy interacting with people. Eventually, he was ready to begin to learn how to play with others." Next, Mikey began one-on-one developmental therapy provided by Discovering Kids Consulting Services. Allen Tomasello supervised Mikey's intensive program that identified specific learning goals important to autistic children.
Placement in an appropriate preschool environment that focuses on developing communication, social, and cognitive skills can be crucial to an autistic child's development. According to Autism Speaks, "early intervention in an appropriate educational setting for at least two years during the preschool years can result in significant improvements for many young children with Autism Spectrum Disorders."
Following his older sister, Michael was enrolled in Early School, Mid-Coast Children's Services' inclusive preschool in Rockland. Early School provides a comprehensive program for children 2 ½ to five years old. It offers classrooms and a curriculum designed to meet the individual developmental and educational goals of young children, with an emphasis on serving children with special learning and developmental needs in an inclusive environment with "typically developing" children.
Frost credits what she calls "Our Team" with seamlessly delivering services in the context of Michael's school day. In addition to his teacher, Lynda Rackliff, Michael works with a speech therapist, an occupational therapist and, on a daily basis, his Discovering Kids worker, Amber Guinn.
"I just think it's incredible that all these people work as a team," she says, "and that the school accommodates that. They believe that Michael is good for the other kids and vice-versa. They don't single him out. He's involved as completely as the other children."
Becky Stoddard, Site Director at Mid-Coast Children's Services, says "We are often a child's first experience in an environment other than their own home. The teachers go out of their way to support the child and the child's family to make that transition as smooth as possible. For the very young toddlers, it might mean a parent stays with the child for a while each day until he/she is comfortable in the classroom."
Over the course of a year, the nurturing, inclusive environment has done wonders for Michael, now three. "He's become a social bug in the classroom," says his mother. "Before he would never initiate play with other children and now he does. He had some tantrum behavior but after a lot of work that's gone. Before he never had facial expressions and now he does. He also had a texture issue; he would break down when he got stuff on his hands. But now he loves the sand table and the water table in Lynda's class. On top of that, he's starting to read! I credit so much of Michael's progress to the school. I've never worked with such incredible people in my life."
For a disorder as increasingly common as autism, science has yet to pinpoint a cause. Studies indicate a genetic basis, but since genetics alone cannot account for all cases, much recent research has been devoted to possible environmental origins and other trigger mechanisms. Though the cause of Michael's autism might never be known, thanks to intensive early intervention the evidence of his progress is indisputable.
Says Kiermaier: "Little by little, Mikey began to smile. He began to run to greet his mother. He began to enjoy playing with his sister. He looked you in the eye. In his mother's words, Mikey was becoming 'human.'"
For a more thorough discussion of symptoms, see the National Autism Association's website at www.nationalautismassociation.org. Mid-Coast Children's Services is a site of Waldo County Preschool & Family Services, which has been nurturing children and supporting families since 1983.
'A group for you': Free workshop for Parents of Young Children with Special Needs
Mid-Coast Children's Services is continuing to offer a monthly meeting for parents of young children with special needs. The next meeting of "A Group for You" will be Thursday, July 5 from 6 to 7:30 p.m. at 272 Park St. in Rockland. Parents will discuss "Family Members' Stages of Acceptance of our Child's Diagnosis."
Everyone who loves and lives with a young child with special needs goes through emotional stages similar to the grieving process, starting with denial and hopefully reaching acceptance. For parents, the reaction of family members, most especially their own parents, is a vital part of their ability to cope and care for their child. The July 5th discussion will focus on family members as well as ways parents and children can have fun together this summer.
"Special needs" include a broad range of developmental, health, and behavioral challenges such as speech delays, vision or hearing problems, autism, and ADHD.
Parents of young children with special needs face a variety of challenges above and beyond those of most parents. Participants in "A Group for You" meet to share their experiences of what they have learned about how to care for their children and for themselves.
Meetings are facilitated by Annie Kiermaier, LCSW. Free child care is available. Interested parents may register with MCCS at 594-8474. Mid-Coast Children's Services is a program of Waldo County Preschool and Family Services.
http://knox.villagesoup.com/Community/story.cfm?storyID=95460


Making waves for autism
Provided by: Sun Media
Written by: SHARON LEM
Jun. 28, 2007
Ed Mahony wants to make a splash for autistic children when he crosses Lake Ontario this weekend.
Mahony, a special education teacher and college instructor in Hamilton, is planning to paddle a kayak across Lake Ontario this Saturday to raise money for a summer camp for autistic kids.
"I'm always taken by the strength and bravery of the parents of autistic children, who have little support and struggle day in and day out," said Mahony, 48. "They deserve extra support and this summer camp is just three weeks of respite, but every little bit counts."

From A Northern friend!

In Yuma, Arizona, the first court case alleging a link between childhood vaccines and autism is being heard in the U.S. Court of Federal Claims.
Eight other such cases are soon to follow, and the decisions made will guide the handling of the other pending claims.
The cases are therefore being closely watched by 5,000 families with autistic children who have lodged claims for compensation.
Most of the families claim that a preservative called thimerosal, which contains mercury, is the culprit responsible for autism. If the courts agree, the families will be eligible for compensation from a federal vaccine injury fund. No autism claim has yet been paid from the fund.
In the Arizona case, Theresa Cedillo says that her daughter Michelle suffered five days of fever after receiving a measles, mumps and rubella vaccination when she was 15 months old. Af terwards, according to Michelle's mother, her personality and health changed for the worse.
In addition to autism, Michelle suffers from inflammatory bowel disease, glaucoma and epilepsy. Her bones are also prone to breaks because of malnutrition, since she must eat most food through a feeding tube.

Dr. Mercola's Comment:

The link between autism and vaccines, and particularly the mercury-rich preservative thimerosal, is a highly controversial topic that often brings strong responses from both sides, but it's hard to argue with facts.
Take, for instance, a study from the Centers for Disease Control and Prevention's Vaccine Data Link that concluded that children who receive thimerosal-containing vaccinations are 27 times more likely to develop autism than children who do not.

Or, consider that Amish children -- who typically don't receive vaccinations and rarely have autism.

Let's face it, mercury is a potent neurotoxin. Injecting it into a child with a rapidly developing nervous system can have terrible consequences. It is true that in many childhood vaccines, the mercury has now been removed -- but only to be replaced with equally damaging toxins such as aluminum and formaldehyde.
Here is a partial list of some of the other fillers that vaccines can contain:
• aluminum hydroxide
• animal tissues: pig blood, horse blood, rabbit brain, dog kidney, monkey kidney, chick embryo, human diploid cells (originating from human aborted fetal tissue)
• monosodium glutamate (MSG)
• phenoxyethanol (antifreeze)
• sorbitol
• sucrose
If you are a parent on the fence about vaccines, please take the time to carefully evalute this issue before making a decision that could alter the life and health of your child forever. Doing so could mean the difference between life and death.


Media Rlease from Howard Hampton
From A Listmate:



McGUINTY BROKEN PROMISE HURTS CHILDREN WITH AUTISM, FAMILIES
Queen's Park
June 27, 2007 - 4:00pm
NDP Leader Howard Hampton said Dalton McGuinty is failing children with autism and their families with his wrong-headed autism policies.
“Dalton McGuinty has failed a lot of people by promising change then failing to deliver – people like children with autism and their families,” Hampton said.
“Their stories are heart-breaking: Parents draining their savings and going into debt to get their kids the care they need – care Dalton McGuinty promised but isn’t delivering. It’s just not right. And it shouldn’t be happening here in Ontario,” he said.
Hampton made the comments at a meeting with local parents and children with autism. The NDP Leader said Dalton McGuinty’s wrong-headed autism policies show he is “out of touch.”
“Instead of Dalton McGuinty just keeping his promise to children with autism, he’s dragging their families through the courts so he can break his promise. Mr. McGuinty promised to provide IBI treatment for all these kids. As of March 31, 2007, 985 children were languishing on waiting lists. That's an increase of 1,100 per cent from when Dalton McGuinty was elected. It’s another broken promise,” Hampton said.
Hampton said Ontario children with autism are being denied the support they need. Without IBI treatment being provided in schools, the kids can’t attend school regularly. When they do attend they don’t learn like they should. And families who are paying out of their pockets for the treatment are going broke.
“Children with autism and their families need action, not buck passing. They need someone to stand up for them and their kids. I am calling on Dalton McGuinty to do the right thing and extend IBI treatment to every child who needs it without delay. It’s only fair,” said Hampton.

From a Listmate:

FRAXA Research Foundation Works to Provide Hope to Families Struggling
to Raise a Child, or Children, with Fragile X Syndrome; Those Of Us At
FRAXA Express Our Most Sincere Sympathy Over The Heartbreaking Tragedy
Of Chris Benoit, His Wife, And Their Son

Jun 28, 2007


NEWBURYPORT, Mass., June 28 /PRNewswire/ -- FRAXA Research Foundation
is
a parent run organization that funds research to find effective
treatments and, ultimately, a cure for Fragile X. Fragile X is the
leading inherited cause of mental retardation and the most common
genetic cause of autism.

Fragile X is caused when a gene fails to produce a single protein
necessary for normal brain function. There is a 50% chance of
inheriting
the Fragile X gene when one parent is a carrier. As parents of children
with Fragile X, we understand first-hand the stress Chris Benoit and
his
wife might have been coping with. At birth many children with Fragile X
seem normal and are often not diagnosed until two or three years of age
when the child fails to meet typical developmental milestones. The
initial shock of learning that your child is mentally impaired,
followed
by the continued emotional and financial strain of finding appropriate
schools, child care and therapies can be an overwhelming emotional and
financial burden for many families. Some of the symptoms Fragile X can
cause are -- severe anxiety, impaired learning, debilitating sensory
integration problems, very limited (or possibly no) speech, obsessive
compulsive behaviors, and even seizures -- making day-to-day life
extremely challenging. Most children with Fragile X have a normal life
expectancy creating an added burden on parents to plan for their
child's
future.

FRAXA funds biomedical research, in the US and internationally, aimed
at
treating and curing Fragile X. Currently FRAXA has numerous treatments
for Fragile X in development in collaboration with pharmaceutical
companies worldwide. FRAXA's basic research, like the recently
announced
therapeutic potential of PAK inhibition, points the way toward
innovative drug therapies for Fragile X and related disorders like
autism.

According to the Centers for Disease Control, FXS affects 1 in 4,000
males and 1 in 6,000 females of all races and ethnic groups. The
prevalence of autism ranges from 1 in 500 to 1 in 166 children.
Currently there is no effective treatment for FXS and other types of
autism.

FRAXA's President and Co-founder, Katie Clapp, is expected to appear on
tonight's "Inside Edition." For more information, please contact Katie
Clapp at 978/462-1866 or Dr. Michael Tranfaglia at fraxa@comcast.net,
or
visit the FRAXA website http://www.fraxa.org .



SOURCE FRAXA Research Foundation
___________________________________________
CTV NewsNet - Thursday, June 28 2007 - 10:30 (Local) - Segment #3

RESEARCHERS IN CALGARY ARE TRYING TO UNDERSTAND WHAT HAPPENS IN THE
BRAIN OF SOMEONE WITH AUTISM. WHY THEY SEEM TO BE IN THEIR OWN WORLD,
OBLIVIOUS TO WHAT PEOPLE ARE DOING AROUND THEM. AS CTV'S KAREN OWEN
EXPLAINS, THE STUDY MAY ANSWER PART OF THAT QUESTION.

Reporter: AT THIS UNIVERSITY OF CALGARY LAB TWO PEOPLE TAKE TURNS
HITTING FLASHING LIGHTS. THEY HIT THE BUTTON A LITTLE SLOWER IF THE
OTHER HAS JUST TOUCHED IT.

THERE IS A SERIES OF STRUCTURES IN THE BRAIN AND SPECIFICALLY A SERIES
OF NETWORK CALLED THE MIRROR NEURON NETWORK THAT REPRESENTS OTHER
PEOPLE'S ACTIONS WITHIN YOUR OWN BRAIN SO THAT IT CREATES A MIRROR
IMAGE
WHAT YOU ARE DOING IN MY BRAIN.

THOSE HELP US EMPATHIZE. THE PERSON WHOSE VISION IS PARTIALLY OBSCURED
STILL SENSES THE OTHER PERSON HAS JUST HIT THE BUTTON. THIS BEHAVIOUR
IS
KNOWN AS THE INHIBITION OF RETURN. FOR INSTANCE, THERE IS TWO OF YOU IN
A BUILDING AND YOU LOSE SOMETHING. SO YOU CHECK ONE HALLWAY. YOUR
FRIEND
LOOKS DOWN THE OTHER HALLWAY. INTUITIVELY YOU WOULDN'T RECHECK THE SAME
HALLWAY. THAT DOESN'T MAKE SENSE. THAT IS INHIBITION OF RETURN. NOW
HERE'S HOW THIS RESEARCH CONNECTS TO AUTISM. THE THEORY IS PEOPLE WITH
AUTISM DON'T HAVE FULLY FUNCTIONING MIRROR NEURONS. THAT'S WHY THEY
OFTEN MISS SOCIAL QUEUES. THAT'S WHY THEY WOULD CHECK THE HALLWAY EVEN
THOUGH YOU JUST LOOKED THERE. THEY MAY NOT PROCESS WHAT THE OTHER
PERSON
IS DOING.

PARTS OF THE BRAIN THAT ARE INVOLVED IN THE MIRRORING OF ACTION AREN'T
QUITE AS ACTIVE IN PEOPLE WITH AUTISM AS IT IS WITH THE TYPICAL POP
LAYING.

Reporter: SO THIS IS JUST MORE THAN FLASHING LIGHTS AND FUNNY GOBBLES,
BUT BETTER UNDERSTANDING THE COMPLEXITIES OF AUTISM, RESEARCHERS CAN
LOOK AT BETTER WAYS OF TREATMENT. KAREN OWEN, CTV NEWS, CALGARY.
__________________________________





She's got the funk; Chaka Khan has done it all, from R&B to jazz, and
has few regrets - unless you ask her about singing at the 2000
Republican convention
The Montreal Gazette

Jun 29, 2007
Page: D5
Section: Arts & Life: Preview
Edition: Final
Byline: JAMES B. KELLEHER


Pop diva Chaka Khan doesn't have a lot of regrets - and little wonder,
with eight Grammys on her mantel.

The 54-year-old singer - who has a wide-ranging catalogue of recordings
to her credit, including her smash hit I'm Every Woman - is releasing a
new album this fall with the tentative title I-Khan Funk.

But when the Chicago native spoke to Reuters recently, she acknowledged
she does regret her appearance at the 2000 Republican convention, where
she sang what was described as "a rousing finale" after George W. Bush
captured the party's presidential nomination.

Q: Your catalogue is fairly broad - funk, R&B, jazz, soft soul - but
your new album is tentatively called I-Khan Funk. Does that say it all?


A: It says it all. It's a funky album. But it's also eclectic. I
covered, for instance, a Joni Mitchell (song). I funked up Ladies' Man.
... We did an equal amount of covers and an equal amount of original
material. And I did some obscure songs like Foolish Fool, which was
done
by Dee Dee Warwick in 1960-something. That was a song I sort of had to
get out of my system. But it's a great song.

Q: Your last Grammy was in 2003, when you won with the Funk Brothers
for
What's Going On? I don't want to jinx you or anything, but what's the
feeling around I-Khan Funk?

A: You can't jinx me. A Grammy doesn't define me. It's nice to get a
Grammy. It's beautiful to be appreciated by anybody. I'm honoured. But
that's not why I do what I do. For a Grammy.

Q: But has it got the potential?

A: It's got amazing Grammy potential and American Music Award
potential.
It's got amazing potential. If done properly. It's got to get out
there.
People have got to hear it.

Q: Technology has transformed the business of selling records. You must
have seen these changes?

A: Yes, I have. (Over) 30 years. And I'm telling you, it's the end of
the big label - the end of the big pimp. You know, I'm so happy to see
that.

Q: You feel empowered?

A: Oh yeah. They had us tied up like cattle. It wasn't pretty. Look at
Elvis Presley, even: He had a lifetime contract. That's unheard of in
the business world outside of music. It just wouldn't fly.

Q: Let's get political briefly. In 2000, you sang at the Republican
National Convention.

A: I'm trying to forget that.

Q: That was my question. In the intervening years, a lot of people have
become disillusioned with the president.

A: I did it for my foundation for autism education. I did it to bring some attention to that.

Q: Did it at least do that?

A: Possibly. It might have done more damage than good - for me, anyway.
For my spirit.

Chaka Khan performs Monday at 8:30 p.m. at Metropolis, 59 Ste.
Catherine
St. E. Tickets cost $42.50. Call 514-908-9090; order at
www.ticketpro.ca.

Colour Photo: MARIO ANZUONI, REUTERS / Khan is glad to see
"the end of the big pimp" in the music industry.
__________________________

Thank you to all of you who voted for Lianne Graymar in the Sunlight Laundry Outdoor Makeover, here’s some good news: SHE WON!
You can see some details by going to http://www.sunlightlaundry.ca/story/ and clicking on the “Contests” link at the bottom of the page, and then the “Outdoor Makeover” button when that page loads. Sorry, there’s no direct link, it’s a flash website.
So now, on heels of that success, I’m posting to ask for your help for another friend who is in another contest. This particular one only allows you to vote once for each e-mail address you have.
Sharon Gabison is the parent of a boy with autism (and he’s a wonderful kid, by the way). She runs a business called ABA Resources, she’s a physiotherapist and a teacher at Seneca College. Here’s Sharon’s message:
As many of you may know, I have worked hard over the past few years to develop affordable educational aids to assist children with autism. These resources are now being used with great success by thousands of parents and in hundreds of schools across Canada, the United States, the UK and throughout the world. I am very proud of my accomplishments, but would love to be able to do more to help parents and teachers help their children (If you haven't seen my website, you can check it out at www.abaresources.com )
Canadian Parents magazine is offering an $18,000 value business development prize package for one worthy mom entrepreneur. ("Mompreneur of the Year Award"). This prize package would be an amazing opportunity for me to both expand the resources that I am offering and to increase my ability to reach parents and educators who could benefit from the resource materials I have developed.
But to win the package I need votes. LOTS OF VOTES. The person with the most votes wins. Please please please consider voting for me. Voting is simple and can be done online with the click of one button.
Please consider passing this on to anyone and everyone who you think would be willing to help.
Take care and thanks so much!!!!!
Sharon

Here’s a link to learn more about Sharon and her business:
http://www.mompreneuraward.com/Nominees.aspx?page=AB

Here’s a link directly to the voting form
http://www.mompreneuraward.com/vote.aspx?momID=234


From up North

Hi Everyone;
Autism Ontario has a monthly magazine called "Autism Matters". They want to know if parents are interested in submitting a few sentences and perhaps a picture of their child or children that have touched their lives, for this summers issue called "Summer Survival Stories and Tips for Families of children and adults with autism".

You could fill in blanks for things like this :
The best decision we ever made about our son/daughter for the summer was.................
or
We were at a local pool one summer ago and this crazy series of events happened............................................
or
The one thing that helps us survive the summer with our child with autism is............................................
If you want to write a little something and add a summer picture of your child, (with or without siblings) please email it to me and I will forward it to the main office ASAP.
I will need your consent though, to use the picture you send, so make sure you add your permission at the end.
They want to have the submissions by June 30th. So hurry!
Thanks!

This may be a copy:

Ont. government must reveal cost of autism treatment lawsuit, says NDP's Martel
Published: Monday, June 18, 2007 | 2:09 PM ET
Canadian Press
TORONTO (CP) - The Ontario government's willingness to go to court rather than reveal how much it spent on fighting an autism treatment lawsuit shows it cares less about children and more about covering its tracks, opposition critic Shelley Martel said Monday.
The Ontario Superior Court of Justice heard arguments Monday about a request under the province's Freedom of Information and Protection of Privacy Act to reveal how much the government spent defending a lawsuit filed by parents of autistic children.
The government doesn't want to reveal how much it spent on legal fees, when that money - perhaps as much as $1.5 million-could have helped so many kids instead, Martel, a New Democrat, said outside the court.
"The public has a right to know how much money the McGuinty Liberals have spent fighting children with autism and their parents in court," Martel said.
Ontario's information and privacy commissioner ordered that the total cost be released earlier this year, but the government launched a court challenge of that decision.
On Monday, Crown lawyers argued those fees fall under solicitor-client privilege and shouldn't be disclosed. They told the court that disclosing the fee would set a precedent that would apply to all lawyers and their clients across the province.

http://www.cbc.ca/cp/health/070618/x061811A.html

From AO Sudbury Chapter:

From: "Karyn Dumble"
>To: "Karyn Dumble"
>Subject: FOR DISTRIBUTION: Weekly News
>Date: Thu, 28 Jun 2007 17:29:31 -0400
>
>This message has been sent to all Chapter Presidents and Staff.
>
>Please distribute to your members.
>
>
>
>
>
>
>
>Summer Edition of Autism Matters hits your mailboxes soon!
>
>Within a couple of weeks, the next edition of Autism Matters will
arrive in
>our office - hot off the press. With the assistance of a diligent team
of
>volunteers, we'll get the magazine and other newsy items stuffed into
>envelopes and out into the mail for you to enjoy. Consider a
subscription
>to Autism Matters next time you need to give that extra special thank
you
>to a co-worker, support worker, teacher or medical professional.
>Subscriptions to Autism Matters are $25/year.
>
>
>
>Online Donations to Autism Ontario
>
>Check out the newest item on our website, online donations! The link
is
>conveniently located on the top menu bar, right next to Contact Us.
>
>Donations can be made online via CanadaHelps.Org, an organization that

>assists many charities across Canada. Even monthly contributions can
be
>arranged!
>
>
>
>Correction to Eleanor Ritchie Scholarship Information
>
>OOPS - Our apologies to Keegan Richard whose name was inverted in the
list
>of recipients for the Eleanor Ritchie Scholarship.
>
>
>
>From Ombudsman Ontario:
>
>June 27, 2007 - Government "puffery" undermines public trust,
Ombudsman
>warns in Annual Report
>
>
>
>In releasing his second annual report today, Ontario Ombudsman André
Marin
>lamented the litany of government organizations whose grandiose
promises
>were exposed as "puffery" under his Office's scrutiny. He also noted
that
>some of the most crucial and costly services funded by the province,
such
>as hospitals and children's aid societies, remain immune to Ombudsman
>oversight, unlike in most other provinces.
>
>
>
>Annual Report 2006-2007: Link:
>http://www.ombudsman.on.ca/UploadFiles/File/AR%20English.pdf
>
>Press Release - Link:
>http://www.ombudsman.on.ca/UploadFiles/File/AR%20Press%20release-Eng(1).pdf
>
>Backgrounder - Annual Report facts and highlights - Link:
>http://www.ombudsman.on.ca/UploadFiles/File/AR%20backgrounder-Eng.pdf
>
>Ombudsman's opening remarks - Link:
>http://www.ombudsman.on.ca/UploadFiles/File/AR%20Opening%20Remarks-Eng.pdf
>
>
>
>Request a hard copy of the report by email: info@ombudsman.on.ca
>
>
>
>Please forward this email to others who may be interested. If you
would
>like to subscribe to receive future emails contact Dean Morra at:
>dmorra@ombudsman.on.ca
>
>If you don't wish to receive future Ombudsman Ontario updates, please
go to
>http:/www.ombudsman.on.ca/unsubscribe
> .asp to unsubscribe.
>
>

>Raun Kaufman Speaking Event on July 11, 2007
>
>Attached are two PDF documents with details on an upcoming speaking
>engagement in Toronto by Raun Kaufman. This event is being organized
by two parents from the Dufferin area.
>
>For more information, please contact Michael and Kelli Pallett at:
>parentslisten@gmail.com.
>
>
>
>
>
>
>
>Disclaimer: It is important to do your own research and make your own

>informed decisions. Please note Autism Ontario does not endorse any
>specific therapy, product, treatment, strategy, opinions, service, or
>individual. We do, however, endorse your right to information.
>
>
>
>
>








From Ellen Notblom’s email list: Newsletter for July 2007
• Meet Chris Fossel, Merrill Lynch Disability Awareness Professional Network
• We’ve got the Midas touch: autism publications win Gold
• Congratulations, Bryce – times two!
• On my soapbox: Do the Math! Stick – carrot = bad policy
• Coming in September: The Autism Trail Guide
• “Search Inside” Ellen’s books on Amazon
• Book excerpts and podcasts
“People are different. And it is the best way.”


From July Newsletter


Meet Chris Fossel, Merrill Lynch Disability Awareness Professional Network
This past May I had the opportunity to speak to a group unlike any other I have experienced. At Merrill Lynch headquarters in Manhattan, 175 people gathered for a “Lunch and Learn” session sponsored by ML’s Disability Awareness Professional Network. Our session was distributed live to all ML offices across the country and afterward, pressed to DVD for those who could not attend or view live.
This impressive effort is the result of the tireless work of Chris Fossel, national leader of the MLDAP Network. From very humble origins – Chris working with ML human resources to help a group of employees with hearing impairments advance in the company – the Network has grown since 1988 to over 500 members around the world.
The DAPN conducts many Lunch and Learn sessions every year, educating both employees affected by specific disabilities and others who have no knowledge but want to know more. Fossel says it is not uncommon that someone in the audience breaks down in tears when they find that resources are available to relieve the burden they have been shouldering alone for so long. DAPN’s activities include recruiting, training and mentoring people with disabilities, community outreach and awareness. Merrill Lynch has been recognized twice by Diversity Inc Magazine as a top place to work for people with a disability, this year placing #2 .
Fossell leads the DPAN above and beyond his “day job” as a Merrill Lynch VP. “It’s my passion” is his modest response. I can only hope this remarkable model catches on with other employers. Bringing information into the workplace makes it accessible to a whole segment we don’t normally see at typical conferences and meetings, including the largest contingent of dads I have ever spoken to in one place. I talk a lot about our efforts making a difference one child at a time. MLDAPN is making a difference one hour at a time, and what a difference it is.
________________________________________
We’ve got the Midas touch: autism publications win Gold
It’s been an exciting month in the publishing world for those of us who care about autism. Two publications close to my heart have won Gold awards in two different competitions.
The Official Autism 101 Manual has won a Gold Medal in the 2007 Independent Publisher Book Awards. It was judged top entry in the Health/Medicine/Nutrition category and was the only book on autism to win any award.
My congratulations go to publisher Karen Simmons, as well as my thanks for bringing me in as one of the many contributors to The Official Autism 101 Manual , including Temple Grandin, Tony Attwood and the late Bernard Rimland.
Learn more at
http://www.autism101manual.com
Autism Asperger’s Digest has won the Gold award in the 2007 National Parenting Publications Awards (NAPPA) Parenting Resources competition. Digest will now get front-and-center coverage on Parenthood.com, one of the nation’s largest parenting Web sites, and an audience of 4.2 million parents through more than 40 regional parenting publications. Digest managing editor Veronica Zysk is “delighted with the NAPPA Gold Award and the nod of recognition it gives to the many talented parent and professional writers who contribute to the Autism Asperger's Digest. The knowledge they share is invaluable to our community."
Learn more at
http://www.autismdigest.com

________________________________________
Congratulations, Bryce – times two!
It was yet another one of those moments I will never get over. Bryce graduated Jackson Middle School on June 15, one of a handful of kids called up for a special academic award – maintaining a 4.0 throughout his 8th grade year. He went up on stage to the applause of an audience of 1,000 or so, cool as a cucumber, and me with quivering lower lip wondering why they didn’t give me some advance warning. While Bryce’s teachers modestly give him all the credit, I must deflect some of the glory back on them. This year’s core teachers took Bryce’s IEP very, very seriously. They adapted materials, assessments and assignments to his learning style, and they were just as enthusiastic about learning from him as they were about teaching him. We can never be grateful enough for teachers like Roberta Rossi, Dave Molloy and Rachel Lee. Salute!
And now we embark on an even greater adventure – high school. Although Bryce has been successful throughout our excellent elementary and middle schools, the time has come for us to leave the public school system for an environment better able to guide Bryce through the home stretch to adulthood. He earned admission to Thomas A. Edison High School, a unique private school specializing in students with learning differences. Edison’s small class size, customized approach to learning, emphasis on responsible social interaction, reciprocal relationship with a large high school next door and extensive transition-to-adulthood program were powerful draws for us as parents and for Bryce himself
We will follow Bryce through Thomas Edison High School in my Autism Asperger’s Digest column, Postcards from the Road Less Traveled, beginning with an introduction to Edison, The Little High School That Does, in the September-October 2007 issue. An excerpt will post on my website at that time. Learn more about Thomas A. Edison High School at http://www.taedisonhs.org/.
P.S. We are twice-grateful to Edison. The photo of Bryce above was taken on the island of Oahu after we won a trip to Hawai’i in the Edison annual auction’s raffle!
Those of you who have read my Ancestry magazine article, Too Soon, will understand that the most meaningful piece of the Hawai’i trip for me was our visit to Punchbowl National Cemetery of the Pacific, where my uncle Ensign Robert Berenson’s name is inscribed in the Court of the Missing. This incredibly perfect place, steeped in both history and timelessness, merits a story of its own in a future newsletter.
(The 30-foot-tall Lady Columbia, symbol of all grieving mothers, watches over the Court of the Missing, accompanied by Abraham Lincoln’s words: “The solemn pride that must be yours, to have laid so costly a sacrifice upon the altar of freedom.”)
Read Too Soon at http://www.ellennotbohm.com/ancestry_enotbohm.pdf.

On my soapbox: Do the Math! Stick – carrot = bad policy
To me, one of the most interesting parts of traveling is reading the local newspapers. I’m intrigued by both the eye-opening differences and similarities in the way people live and meet the challenges of life. This recent headline the Honolulu Advertiser grabbed my attention: “Hawai’i one of 9 states up to par on special ed.” The statistic refers to the 2004 reauthorization of the Individuals with Disabilities Act. Along with Hawai’i, Alaska, Connecticut, Michigan, Oregon, Pennsylvania, Tennessee, Virginia and Wyoming were deemed as meeting requirements while 51 other states and territories were deemed as needing “assistance” or “intervention.” The article went on to say: “The U.S. Education Department said that the states that are not now fulfilling there responsibilities...could face sanctions such as the loss of federal aide if they don’t improve...”
Could some porch bulb brighter than me kindly explain how withdrawing funds that are already inadequate is going to help our kids? If a program – any program -- achieves only 18% compliance, the first question to be answered before all others is WHY? Threatening a punitive response is acceptable if, and only if, it has been determined that the non-compliance is completely willful -- that all states in fact possess all tools and resources necessary to meet all requirements.
A punitive response without examining addressing underlying causes indicates that those administering funds have lost sight of who the IDEA is serving – special needs children. The questions I would ask of a program that is not succeeding are largely the same questions I would ask if my child were not succeeding.
Are the requirements couched in clear, relevant terms and has it been determined that all 51 non-compliant states and territories actually understand what is required ? How many are mired in cultural or government double-speak and/or miscommunication?
Do states have adequate resources and tools to fulfill the requirements: teachers and teacher training, administrators, therapeutic professionals, physical space, supplies, equipment, books, software?
Are the requirements realistic? In one memorable interview on National Public Radio last year, an elementary school principal in Appalachia challenged the federal government to send him “highly qualified” teacher applicants who were willing to work under the challenging conditions – low pay, few resources – his community was able to offer. If, he said, he is allowed to hire only teachers “highly qualified” as defined by the law, the reality would be -- no teachers.
A number of times during the course of my own and my children’s education, it would happen that a sizable majority of the class would flunk a particular test. The good teachers allowed that if nearly everyone flunked, there were only two reasonable likelihoods: the material wasn’t understood (in which case we go back and teach it again, perhaps in a different way – i.e., give the students better resources) or the test (standard of measurement) itself was flawed. The less admirable teachers would say, too bad, you take the hit to your grade and we slog on through the curriculum.
Before the DOE imposes “sanctions” on children who are already at a disadvantage, they should make very sure that their own tools and methods are not part of the problem. As citizens and parents, we are the boots on the ground, and it’s our job to always question and call attention to practices that are at best ineffective and at worst harmful, be they in our schools or our government.

Coming in September: The Autism Trail Guide
An anthology of insights based on my column Postcards from the Road Less Traveled. From the Preface:
“I think of the essays in this book as trips to the tool shed wherein we store all the virtual hardware needed for this creative construction project that is our child with autism. As autism is a shifty foe, so shift our needs, seemingly with the wind, from day to day and even from hour to hour. Sometimes we need a machete to hack through the education bureaucracy. Sometimes we need insect repellant to deal with the inevitable unkindness of strangers. Sometimes we need a cultivator to sow and encourage the growth we know will come if we are patient and steadfast in our work. And sometimes we need a soldering iron to weld our broken hearts back together. All of this you will find in these pages as we tackle a spectrum of challenges from nuts-and-bolts everyday issues like math homework, video games and tricky behavior to the larger life issues that have no simple answers. When to take risks and when to play it safe. When to step up and when to back off. How to hang on and when to let go.”
Read the first chapter here, You Know More Than You Think You Know

“Search Inside” Ellen’s books on Amazon.com
All of my books now carry the “Search Inside” feature on Amazon.com. This is a wonderful opportunity to test-drive the book before you buy, something in which I am a big believer. We all have finite financial resources and even more finite reading time. “Search Inside” will give you a better sense of whether a book is right for you or someone you know.

Website reads
Book excerpts:
Ten Things Every Child with Autism Wishes You Knew
Ten Things Your Student with Autism Wishes You Knew
1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders
The Autism Trail Guide: Postcards from the Road Less Traveled
Article Anthology:
http://www.ellennotbohm.com/articles.html
Podcast interviews with Ellen
Click here to listen to the podcast at AutismPodcast.org
Click here to listen to the podcast at Senior Dad
Please forward this newsletter to anyone you feel might share an interest in our kids with autism. New subscribers can sign up at my Website.
If you’ve read my books and feel inclined to share your thoughts with others, please consider posting a review on my book pages at Amazon.com. It's easy to do and you don't have to post your real name.
If your spam-blocking software is particularly aggressive , you may want to add our email address to your “white list” of senders.
We take your privacy very seriously, and do not share our mailing list addresses or information with any other entity or business.
©2007 Ellen Notbohm | Third Variation Strategies, LLC
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Special Education Resource Document

Effective Educational Practices for Students with Autism Spectrum Disorders
This guide is available as an Adobe Acrobat file. (PDF, 2.85 MB)

YES I – Trish K from AFA is pleased to say I am labeling my child with a tattoo from Tattoos with a purpose…

They are affordable and wonderful for daycamps!!!

Click here:
http://tattooswithapurpose.com/orderherenow.html

From a friend:
From: Julie Coulter [mailto:coultervideo@att.net]
> Sent: June 26, 2007 2:26 PM
> To: coultervideo@att.net
> Subject: NEW Sibling Autism and Asperger Syndrome DVDs


> Hi,
>
> We're letting our customers know about a new DVD Coulter Video is
> releasing
> today titled, "Understanding Brothers and Sisters on the Autism
> Spectrum."
>
> This video is designed for siblings who have brothers and sisters
> diagnosed
> with autism. The video deals with a range of autistic conditions,
with
> the
> exception of Asperger Syndrome. We'll be releasing a similar video
for
> siblings of brothers and sisters diagnosed with Asperger Syndrome
within
> the
> next few months.
>
> Each DVD (the autism version and the Asperger Syndrome version)
contains
> four programs; three for siblings of different ages and developmental
> levels, and one for their parents. The sibling programs are for
> children
> ages 4-7, ages 7-12 and ages 12 to adult. While the two DVDs have a
> similar
> format, each is unique. For example, we interviewed families dealing
> with
> an autism diagnosis for the autism DVD and families dealing with an
> Asperger
> Syndrome diagnosis for the Asperger Syndrome DVD.
>
> These videos show siblings that other kids are facing the same
> challenges
> they face, and explores a range of ways the kids interviewed have
> learned to
> get along with and enjoy their brothers and sisters. The videos also
> can
> help parents understand the special needs of their neurotypical
> children.
> The segments for siblings ages 4-7 feature puppets and the segments
for
> older siblings feature interviews with brother and sisters. We
> interviewed
> mothers and fathers for the parent segments.
>
> Overall, we interviewed members of 24 families with children on the
> autism
> spectrum to create these two videos. After viewing these programs,
> siblings
> should have a better understanding that their brothers and sisters
> aren't
> trying to be difficult, and should be more willing to treat them with
> tolerance, caring and respect.
>
> Again, "Understanding Brothers and Sisters on the Autism Spectrum" is
> available now. "Understanding Brothers and Sisters with Asperger
> Syndrome"
> is scheduled for release in August, 2007. Here's the Internet address
to
> view more information about the video on our website:
>
> http://home.att.net/~coultervideo/understandautas.htm
>
> We hope these videos can be a helpful resource for families.
>
> Sincerely,
>
> Julie and Dan Coulter
>
> COULTER VIDEO
> 1428 Pinecroft Drive
> Winston-Salem, NC 27104
> tele. & fax: 336 794 0298
> www.coultervideo.com
>
>
>
>

Man kayaks solo across Lake Ontario
http://www.thestar.com/News/article/232213
16-hour trip raises $4,000 for Hamilton autistic kids camp

Jul 04, 2007 04:30
Iain Marlow
STAFF REPORTER

As the speck of Ed Mahony grew larger on the smooth surface of Lake Ontario yesterday, his wife Rita Chimienti gazed out at him from the beach – and then dialled his number.
The kayaker, about 100 metres out, slowed down, laid his paddle across his lap and answered.
"You'll be here in a sec? I'm going to take pictures from the bridge," Chimienti said, adding that she and Mahony's mother had forced him to take the phone with him.
She ran up onto the white bridge at the mouth of the Humber River, snapped some shots and ran back down to see him slide his canoe into the sand shortly after 11 a.m.
She had been waiting since 5 a.m.
"Well, it's done," Mahony said, stepping into the water. "Last night was so nice on the lake."
The 48-year-old had paddled overnight from Niagara-on-the-Lake. He pushed off at 7 p.m. on July 2 and arrived yesterday – a 16-hour journey.
"I like to choose rivers. You like to do this," Chimienti chided him, gesturing towards open water.
The 60-kilometre trip raised $4,000 for a summer camp Mahony founded and runs for autistic youth in Hamilton, where he is a special-education teacher.
Mahony started the Winner's Circle camp in 2001 as a place where children with severe autism receive one-on-one attention from staff.
If parents can't afford the $50 registration fee, then it's free, Mahony said.
Yesterday marked the end of his third attempt at crossing. Three days ago, when he hit open water on Lake Ontario, trees on shore were creaking and bending in the wind and so he turned back.
A small Canadian flag was affixed to his kayak's stern to mark the holiday.
He said he plans on paddling the rest of Canada's Great Lakes and added that he likes to paddle out five or 10 kilometres, where the water is all his, to sit and drink coffee.

From A listmate

Ask Lindsay Moir:
Addressing school concerns during the summer
Wednesday, July 04, 2007
Question:
This is a "created question" which comes from a disturbing number of emergency phone calls (12) and emails (10) that were frustrated calls for help from parents of special needs children this past week.
Some Examples:
"I received a note saying that "Chris' placement for next year would be changed due staffing issues" — in his backpack on the last day of school. When I phoned the school everyone had left for the summer."
"I was promised an answer regarding support by the last day of school — it has come and gone and I still have no answer — what now?"
"I am just sick with worry and I will be sick all summer . . . we have some very serious safety issues at school — and they have gone for the summer without meeting with us. How can I plan to send my son into an unsafe environment? They have known for four months that this is a very important issue to us and yet left it unresolved. . ."
"This morning I received a very formal letter that reversed our plan for Matthew — everything was agreed upon at his team meeting and we were all set for next year . . . we thought! Of course, when we phoned the school we got a recorded message that it is closed until Aug 27th!"
I have concerns that this strategy of "last minute surprises" is growing, as a way of managing difficult parents — I have never had so many frustrated families contact me on this issue. It is a province-wide phenomenon — not board-specific! What do I recommend?
Answer:
Let's be fair! This is only a very small percentage of the thousands of schools and families involved — however it is also likely only the "tip of the iceberg" of reported occurences.
It is a failure in leadership if educators prefer to avoid delivering"bad news" face-to-face. I have had many parents this year complain that principals and senior administrators repeatedly fail to return phone calls. Educators who respect parents by promptly returning calls gain valuable "currency" in the school-home interaction.
I believe that most parents can accept that not everything has an easy solution and that resources are limited. Solutions are often found when the two parties "brainstorm" together. Avoiding this dialogue, rules out collaborative solutions!
We are in a time of transition, where educational leadership is changing.
In the "old days" automatic deference meant that an educator never had to consult with parents — their word was supreme and no-one dared to question a principal's decision. This is no longer true — as we move into a collaborative era, successful educational administrators must communicate with parents and community professions in order to make the system work for an increasingly complex student population.
Secondly, we have many inexperienced administrators who have not yet found their comfort level. Some of them feel threatened by knowledgeable parents. Some live in fear of making a career-killing mistake. They avoid confrontation — or potential confrontation. Avoidance does not solve problems. They seek safety in "following the rules" rather than finding solutions.
Parents repeatedly tell me what a key player the principal is — good principals creat happy parents and successful kids . . . bad ones sap the energy and resolve of families . . . but ones trying to play safe are just as big a problem. If the system rewards those who blindly comply and "keep their head down" — then we reward mediocrity. We need "risk-takers" as we deal with the complexity of special education in the years to come.
What would I do about "last minute" strategizers?
I would write a letter of concern outlining the issues and the broken promises (just the facts — no editorial comments please!) I would send this to the Area Superintendent AND the Special Education Superintendent AND the Chair of SEAC AND my trustee. I would ask them to respond in writing with a solution to the concerns within a two week time frame. I would demand summertime resolution.
Realize that most board offices are open in the summer time and I would e-mail and voicemail the appropriate people regarding a solution every Monday. I would not accept the "put-off" that the school is closed so let's deal with it in September. Most principals receive a number of calls over the summer. Many are called to a few meetings since they technically are "on call" for July and August. When a Superintendent is away someone will be covering for them. Do not let the absence of one person hold up the resolution of your issues.
Once you establish that you will not be "put-off" and you will make such treatment a "public" issue (let others know about it) — people who are trying to "keep their heads down" will not use this strategy again!
Hopefully, this year was the anomaly — and this practice will fade out by next June. As parents we need to have things settled by the end of school and to have plans in place for September —in order to get some enjoyment out of our summer "break" too.
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at ask.questions@yahoo.ca He will answer as many questions as possible.
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A movie that's so nice, it stinks
By Robert Horton, Herald Movie Critic
There are few things quite as excruciating as a well-meaning, earnest movie that hits its single note like the same out-of-tune key on a piano. The Canadian indie "Snow Cake" is one of those movies.

We are in the icy Ontario town of Wawa, where a mysterious Englishman named Alex (Alan Rickman) is passing through when tragedy strikes. When he goes to the house of Linda (Sigourney Weaver), he expects to find a bereaved woman.

Instead, he discovers that Linda's autism makes her something other than conventional, in every way. Linda has just lost a child, and Alex stays in her house while awaiting the funeral.

This contrivance allows Alex to learn some life lessons about himself and Linda. Carrie-Anne Moss plays the woman next door, a free spirit who finds the dour, fussy Alex irresistibly attractive. Vancouver native Moss is in another Canadian film this week, the zombie comedy "Fido," and you might find yourself hoping a stray zombie would wander into this production.

The days drag on, and so does the movie. It's not that screenwriter Angela Pell (who drew upon her experiences as the mother of an autistic son) and director Marc Evans lack a sense of humor. It's that everything in the film is so exactly on the nose. Linda's sense of childlike fear and wonder, Alex's slow thaw in her company, the community's gradual acceptance of the situation - these can all be seen in the first 20 minutes of the picture.

Because it's an actors' film, there ought to be some pleasure on that level. But the pairing of Rickman and Weaver (perhaps trailing memories of their shared work in "Galaxy Quest") doesn't set off any bells.

Rickman, late of "Love Actually" and the "Harry Potter" movies, is unparalleled when it comes to dialing down his energy and letting his sonorous voice do the work. But he's defeated by his pointlessly enigmatic character.

Weaver has given some terrific performances, but this is not one of them. With a limited emotional range to work with, she tries hard to indicate Linda's level of awareness and functionality. She tries entirely too hard.

A nice musical score by the Canadian group Broken Social Scene is also in vain. "Snow Cake" is winsome and sensitive and intent on having everything work out fine. The results are lethal.

Alan Rickman and Sigourney Weaver star in "Snow Cake."
http://www.heraldnet.com/article/20070706/ENT/707060323



Amazon books:
Ten Things Your Student with Autism Wishes You Knew
Thinking in Pictures, Expanded Edition: My Life with Autism
The Complete Guide to Asperger's Syndrome









From a listmate:

HEALTH: RISING INCIDENCE THE SEARCH FOR CLUES
Researcher sees link between vitamin D and autism
Experts call the hypothesis - that deficiency in pregnant women and young children is a factor - speculative
MARTIN MITTELSTAEDT
ENVIRONMENT REPORTER
July 6, 2007
The growing prevalence of autism is one of the biggest scientific whodunits in the medical world, with few clues for its rising incidence.
But a U.S. researcher is advancing a controversial hypothesis: that autism is related to vitamin D deficiency during fetal development and early childhood.
Dr. John Cannell, a psychiatrist and prominent vitamin D advocate, says flagging levels of the vitamin in pregnant women and young children could be the elusive factor explaining the rising rate of autism.
The evidence for such a link is circumstantial, and autism experts describe the hypothesis as speculative. But Dr. Cannell, founder of the Vitamin D Council, a non-profit advocacy group, says autism rates have skyrocketed in lockstep with medical advice given to the public since the late 1980s to avoid all exposure to bright sunshine.
Print Edition - Section Front
"If it's true, I can't think of another situation where medical advice was so damaging to such a large number of people," says Dr. Cannell, who practises at Atascadero State Hospital in California.
The vitamin D link "is an interesting speculation," says Dr. Wendy Roberts, a professor of pediatrics at the University of Toronto and one of Canada's leading autism experts.
Because the cause of autism is such an enigma, Dr. Roberts says researchers should investigate vitamin D, but the public should treat the idea more cautiously.
"You like to be able to have something that is firm and clear before you get parents all excited and doing something and then, once again, being disappointed," she said.
Although Dr. Cannell is something of a maverick in research circles, he has credentials. Last year, he published an important peer-reviewed paper linking low vitamin D levels to an increased susceptibility to influenza, based on research at his hospital.
But for his autism hypothesis, he is now jeopardizing his chances of publication in a scientific journal by e-mailing the Vitamin D Council newsletter outlining the idea to thousands of U.S. autism activists - a possible violation of the rules of publication.
Dr. Cannell said he decided to disseminate his hypothesis now to encourage the public to increase its sun exposure during the warmer part of the year.
"If only 10 pregnant women go outside and sunbathe a little bit, they may be saved a lifetime of misery," he said.
The idea that vitamin D deficiency may have a link to autism isn't as farfetched as it once might have seemed because the deficiency is also emerging as a possible cause of many diverse illnesses, ranging from multiple sclerosis to cancer.
Last month, the Canadian Cancer Society recommended adults start taking the sunshine vitamin to reduce their risk of cancer.
Autism refers to a spectrum of conditions that involve repetitive behaviours and difficulty communicating and interacting socially. Autism manifests itself in the first few years of life and is thought to be some kind of neurological disorder affecting brain function.
One discredited theory is that the mercury-containing preservative thimerosal once used in childhood vaccines causes autism. Studies have failed to find any link.
The cause of autism is further clouded because some scientists speculate that part of the apparent increase in incidence - in the United States it is being diagnosed about 10 times more frequently now than in the early 1990s - may reflect improved reporting by doctors more aware of the condition.
The current Canadian estimate is that about 60 children out of every 10,000, or about 1 in 165, have autism and related conditions. Up until the 1990s, the prevalence was thought to be far lower, at only 4 or 5 children in 10,000.
If there is a vitamin D link, incidence rates around the world would probably vary by latitude. Rates would be lower in equatorial areas, where sun exposure is higher, than in northern latitudes, but studies investigating geographical differences in diagnosis haven't been done.
Dr. Cannell says some of the strongest evidence vitamin D may have a hand in the disorder is that the vitamin is converted in the body to a steroid hormone, which in animal experimentation has been found to influence brain development. If vitamin levels are low, whatever brain development it is linked to will be skewed.
Startling trend
The occurrence of autism spectrum disorders (the most sever of which is autism) has risen sharply during recent years.
Rate per 10,000
UNITED STATES
1980s: 4-5
1990s: 30-60
2000A: 67
CANADA
2001B: 60
SOURCES: ENVIRONMENTAL HEALTH PERSPECTIVES
A- CENTRES FOR DISEASE CONTROL
B-CAIRN
http://www.theglobeandmail.com/servlet/story/LAC.20070706.LAUTISM06/EmailTPStory/
From the Star:

Man kayaks solo across Lake Ontario
16-hour trip raises $4,000 for Hamilton autistic kids camp
July 04, 2007
Iain Marlow
STAFF REPORTER

As the speck of Ed Mahony grew larger on the smooth surface of Lake Ontario yesterday, his wife Rita Chimienti gazed out at him from the beach – and then dialled his number.
The kayaker, about 100 metres out, slowed down, laid his paddle across his lap and answered.
"You'll be here in a sec? I'm going to take pictures from the bridge," Chimienti said, adding that she and Mahony's mother had forced him to take the phone with him.
She ran up onto the white bridge at the mouth of the Humber River, snapped some shots and ran back down to see him slide his canoe into the sand shortly after 11 a.m.
She had been waiting since 5 a.m.
"Well, it's done," Mahony said, stepping into the water. "Last night was so nice on the lake."
The 48-year-old had paddled overnight from Niagara-on-the-Lake. He pushed off at 7 p.m. on July 2 and arrived yesterday – a 16-hour journey.
"I like to choose rivers. You like to do this," Chimienti chided him, gesturing towards open water.
The 60-kilometre trip raised $4,000 for a summer camp Mahony founded and runs for autistic youth in Hamilton, where he is a special-education teacher.
Mahony started the Winner's Circle camp in 2001 as a place where children with severe autism receive one-on-one attention from staff.
If parents can't afford the $50 registration fee, then it's free, Mahony said.
Yesterday marked the end of his third attempt at crossing. Three days ago, when he hit open water on Lake Ontario, trees on shore were creaking and bending in the wind and so he turned back.
A small Canadian flag was affixed to his kayak's stern to mark the holiday.
He said he plans on paddling the rest of Canada's Great Lakes and added that he likes to paddle out five or 10 kilometres, where the water is all his, to sit and drink coffee.



Family of boy with autism wins backyard makeover
Friday, July 06, 2007 -- Natalie Miller
An Alliston-area parent of a six-year-old son with autism has increased peace of mind after winning a backyard makeover contest which includes a sturdy fence to keep her child safe.
Lianne Graymar and her family won a $25,000 backyard facelift courtesy of the Sunlight Multi-Action Outdoor Makeover Contest.
“This has meant so much to our family,” says Graymar.
“The first day I was able to open my patio door and tell Carter to go play was a very emotional day. The feeling of not having to worry was something that my family had never been able to do. It means I can now sit on a blanket with Carter's sister (twin, Miya) and blow bubbles instead of being by his side and ready to run.”
“The backyard is beautiful,” says Graymar. It includes grass, five gardens, a basketball court and a dog pen for Carter’s service dog who will join the family later this month.
To see before-and-after photos, visit http://www.sunlightlaundry.ca/story/
The TV spot about the contest winner has aired on YTV and the W network during the past two weeks.
Graymar was prompted to enter the nationwide contest after seeing an ad on television. Like many children who have autism, Carter sometimes bolts without warning and his family did not have a fenced-in yard.
“We have an acre of land that backs on to hundreds of acres of Base Borden forest,” Graymar earlier explained. “Our fear is that Carter will venture into the forest as well.”
The family learned this spring it was one of four finalists and was delighted to hear the exciting news of the win recently. “We just had our wedding (June 23) and it was a beautiful backdrop,” notes Graymar.
In May, Canadians voted for the contestant they felt deserved the outdoor makeover on the Sunlight website. The Canadian autism community also stepped up to support the Graymar family.
Graymar earlier explained she planned on having a chain-link fence installed but changed her mind after she saw Carter effortlessly climb a relative’s fence. Cost was a factor in building something more suitable.
Graymar says while she appreciates what her family has received so many other parents of children with autism face the same quandary.
“This has been wonderful but there are other families who need help just like mine. I hope to let people know that my situation is not unique it is a struggle we all face with safety.”


Walkers looking forward to home after marathon

Rob Skelly, Marcel Destine, Andrew Rossi, Daniel Rossi and Mark MacDonnell arrive back in Markham tomorrow after walking 2,500 kilometres from Halifax to raise money for the Centre for Dreams.
MORE STORIES
Markham
Jul 07, 2007 07:49 AM
By: Simone Joseph
One of the worst periods of Andrew Rossi and friends’ trek from Halifax was three to four days walking the Trans Canada Trail in Quebec.

Mosquitoes pestered them. Their truck with food and supplies could not be with them.

They were not allowed to walk Quebec’s highways. Instead, they walked the Trans Canada Trail as an alternate route.

On Sunday, the Five With Drive returns home.

“I am a little relieved. I kind of miss home, miss my bed,” Mr. Rossi said in an interview this week.

He will certainly not miss sleeping on a hard floor in tents, days walking through rain, soaked socks and shoes and relying on the sun as a dryer.

The Five With Drive crew has walked 2,500 kilometres from Halifax, Nova Scotia in support of The Centre for Dreams, which has programs for developmentally challenged adults.

The group returns to the Markham Civic Centre Sunday (near Hwy. 7 and Warden Avenue), where a celebration is planned with live music, jumping castles, clowns and a barbecue.

Mr. Rossi, his brother, Dan, and neighbour Marcel Destine, all from Markham, teamed up with Newmarket’s Mark MacDonnell and Richmond Hill’s Rob Skelly. All have volunteered with people with developmental disabilities, such as autism, Downs syndrome and cerebral palsy.

Their 43-day trek was a bid to raise $100,000 for the centre.

About $30,000 was raised before the walk began May 27 and ticket sales for a Vespa motor scooter raffle Sunday also go into the pot. One raffle ticket is $10 or three for $25.

Meanwhile, a three-day walkathon, from June 26 to 28, raised $12,000 for the Centre for Dreams, exceeding the goal set by organizer Harry James.

Mr. James, who is also the centre’s board chairperson, participated in the walkathon, which attempted to mirror the Five with Drive walk using elliptical machines.

As for the walkers, they walked an average of 13 hours (as much as 55 kilometres) per day followed by a truck and trailer donated by Woodbine Chrysler.

They slept in tents or in homes and hotels that offered free shelter.

One of the enjoyable parts of the walk was hearing each person’s life story, Mr. Rossi said.

They played games to pass the time, such as quoting movie lines and guessing who said them.

“It takes your mind off of the physicality of the walk,” Mr. Rossi said.

As for their plans?

“We just want to go home and feel satisfied we walked it. We did what we set out to do,” Mr. Rossi said.

The team has a GPS link, which can tell you where they are, at www.fivewithdrive.ca

Festivities run from 3 to 7 p.m., with the arrival ceremony at 5:30 p.m.

For more information, to support the team or make a donation, visit www.fivewithdrive.ca, www.dreamsinc.ca or call 905-209-9092.


From a listmate


Dear friends,

I write first as the father of Dov, a 15 year old boy who is very challenged by autism. Secondly as the founder of Cure Autism Now and finally as a board member of Autism Speaks.

I was moved when I read Katie Wrights letter on the NAS website. I thought it was brave, and thoughtful and courteous. And because there has been so much strife in our community and I have felt so heartsick about it, her letter moved me to share some thoughts---

Katie Wright is a devoted mom with a very sick child, and she is looking high and low for something that will help him.

Bob and Suzanne Wright are loving parents and grandparents dealing with a double shot of grief, one for their daughter and one for their grandson. They, too, are looking as hard as they are able for
something to help him.

And so am I. The search for answers is what prompted me to start Cure Autism Now. And though we haven't found the answers yet, the one thing I am pretty sure about is that we won't find them any faster by insisting that everyone search in exactly the same place.

Whether we try to heal autism with environmental research, genetic research, prayer books, PhDs, double blind studies, or business plans written by consulting firms, aren't we all honest, brave, sad and good? Don't we all love the autistic people in our lives for who they are, and don't we all also want more for them?

Is there a family that hasn't had a fight? Aren't we all just so frantic sometimes as we desperately search for ways to help our children? Don't even the best of us sometimes get angry and cast
blame? Here's is just the briefest sampling of my family dialogue, tell me if it doesn't sound familiar:" If only we'd started ABA earlier,… We should have done floortime….We can't vaccinate the
others…Are you kidding? They won't let them into school… I want to go gluten free….I'm just grateful he's eating anything even if it is 100 grilled cheese sandwiches…. No wonder he's autistic, your family is crazy…. Mine? No you must be mistaken, you are a nut, and your nutty
family is definitely nuttier… have you talked to your father lately…No?...my point exactly…"

And yet, what do we agree about in our family? We agree that Dov deserves our love, our respect, our commitment, our hope and our hard work, We believe that he is counting on us to help him. Dov who can only communicate by painstakingly slow typing, knows he is autistic and he has told us many times that he doesn't like it. And so our family will put aside our squabbles as best we can and keep on working.

To the activists, bloggers and the journalists I want to beg for just a little mercy and restraint. Let us make our own best arguments on the merits rather than use this one family as our proxies.

There are so many things we need to fight for together,.We need more research, more trained therapists, we need Medicaid waivers, IDEA funding, the kids in the neighborhood to be more kind and less cruel. We don't really need hate mail and editorials that make us out to be idiots. The last thing we need to is fight against each other. There are real enemies out there. There is a disorder that is crippling a generation and there is a government that takes very little interest. If I have learned anything in ten years of lobbying it is that the feds love it when we are factionalized and fighting amongst ourselves.It buys them one more year when they don't have to do
anything.

To Katie, I'd like to say thank you. Your letter was strong and kind. You have been brave. I'm glad you are in the fight, I hope you stay in it., We need many voices.

I agree with you urgency is still so very important. I have been working to find treatment and a cure for autism for 14 years and I am NOT doing it for the next generation. I am doing it for this
generation.

To the board and supporters of Autism Speaks, if some of our critics are right, and urgency isn't a big enough part of our vision, then we need to change. The same with treatment. Even while the larger answers to larger questions may take more time, people with autism can have a better quality of life today and we must help that happen.

If we are not seeking out new ideas and fresh talent, then we must change. If innovation is somehow perceived as the enemy of excellence, then we must change. If we don't deeply understand that in order to lead we must serve, than we must change.

I think we haven't gotten it totally right yet at Autism Speaks. But we are new and we trying really hard. We are trying to integrate a couple of strong, proud organizations, we are trying to move fast, and occasionally, we stumble. I hope we recognize that we can learn and improve.

We will have faith, but we will earn our miracles We will use our hearts and our minds to grab them from the dreamy future and bring them here today. We will find the best scientists and encourage them to use all their wisdom, art and discernment to treat and to cure autism. And when we have done that, we will do it again the next day. We will be optimistic, but not satisfied, we will question authority, despise complacency and above all love our children---for that is the obligation without end whose reward is also without end.

In peace,
Jon Shestack


From a listmate
Fears Over Massive Surge In Autism
Updated: 09:33, Sunday July 08, 2007
The number of children in Britain with autism is almost as twice as high as previously thought.

Questions over MMR jab for pupils
A report published in the Observer found one in 58 may have the condition - compared to the existing estimate of one in 100.
The figures, compiled by Cambridge University's Autism Research Centre, estimates as many as 210,000 children under 16 could be autistic or suffer from a related disorder.
Prior to the 1990s, experts estimated the rate of autism in Britain to be around four or five cases per 10,000 people.
The reason for the increase is not known. It may be due to a genuine rise in cases, or merely the result of labelling more children as autistic.
Autism is an umbrella term for a range of developmental disorders that impair a person's ability to interact socially and communicate.
http://news.sky.com/skynews/article/0,,30100-1274176,00.html


From a listmate

July 6, 2007 THE GUARDIAN (CHARLOTTETOWN)
Autism Society praises ruling on Disability Support Program
The Autism Society of P.E.I. is praising a recent human rights panel decision that took the province's Disability Support Program to task for treating the mentally disabled differently than the physically disabled.
A group of four families of children with cognitive challenges, three of whom had autism, challenged the DSP and successfully showed discrimination on the basis of age and disability. The province hasn't responded but the society says the ruling provides a chance to redesign the DSP.
"It is our hope that we can work collaboratively with the province to improve services for Island families affected by autism," said society president Michelle Pineau. "We look forward to an upcoming opportunity to sit down with the new administration to discuss these important issues for Island families."
__________________________________
July 4, 2007 EDMONTON JOURNAL (FINAL)
Treating autism early
Audrey Jensen, The Edmonton Journal
Re: "Medicare coverage for autism urged: Actor Eugene Levy demands Ottawa treat autistic children fairly," The Journal, June 14.
Kudos to Eugene Levy, who is playing the role of strongman in attempting to get fair treatment from medicare for the forgotten children, the victims of autism.
Treatment can cost parents as much as $60,000. Autism is associated with neurological brain damage, speech difficulties, etc.
My grandson is autistic and I am aware of the anguish. It's like someone has stolen into your house during the night and left a child's bewildered body.
My son and his family lived in Arizona. A highly qualified technician had suspected my grandson of being autistic. A diagnosis is often done around the age of 18 months, when most babies start trying to talk. House calls and intensive treatments continued until my grandson was three, with the state picking up the entire tab. Then, a school bus picked him up three days a week and took him to a special autism school. All expenses were paid by the school district.
I was amazed at the improvement that early intervention made. One technician said cutting back on research and treatment of autism would cost more in the long run, as it would cost taxpayers millions more to provide lifetime care for an autistic person.
I maintained that autism could be reduced if its cause was found and eradicated.
A new study of more than 9,000 boys in California and Oregon has found that vaccinated boys had a 155-per-cent greater chance of having a neurological disorder like ADHD or autism than unvaccinated boys.
Audrey Jensen, Red Deer

From a listmate

Letter Printed
Tor Sun
Sunday July 8

AUTISM RIBBON WORKS
(Re “A Chainsaw to the old oak tree” Rob Granatstein, July 1)

In conversation with my local MPP’ Garfield Dunlop, I told him of my grandson Michael Felstein. He asked how Michael was being helped and then ran two blocks and came back with an autism awareness ribbon for me to put on my car. Since then, contrary to your statement that they have become part of the background, I have had people stop me in parking lots, at the park, in my driveway, etc, all asking where they can get one and about knowing someone who is autistic.

I live in a village of 900 but am close to a town of 10,000. It has made me aware that if that many people are asking in such small communities, how many families are coping with this situation. I feel that the ribbon has fulfilled its purpose and has and will bring awareness to this Diagnosis that is still shrouded in mystery.

Barb Andrews
Victoria Harbour

IMPORTANT ANNOUNCEMENT FOR ONTARIO
Province sending autistic children to summer camp
Tue, July 10, 2007
By CP

TORONTO -- Hundreds of autistic children will be able to go to special summer camps because of last-minute funding from the Ontario government, CP has learned.
A news conference is scheduled for this morning to announce further details about the $530,000 in funding that will help give more than 800 kids specialized care in preparation for school in September.
"Summer camps not only help maintain skills gained during the school year, they also give families a bit of relief while their children receive expert care in a positive setting," Children and Youth Services Ministers Mary Anne Chambers said in a release.
It's a good-news announcement for families across the province, said Margaret Spoelstra, executive director of Autism Ontario.
"We have been talking to governments over many, many, many years about the needs that parents have to fill that gap in the summertime, which requires extra supports for kids with autism," she said.
"This additional support will go a long way to help us increase the number of kids attending camp and also to provide some one-to-one support the kids require."
In May, the Ontario government also gave $38,000 to a Toronto camp that was on the verge of closing its doors after being denied federal funding.
Spoelstra said that loss of federal funding was a reality check for Autism Ontario, which has a network of 29 volunteer-run chapters across the province.
"That prompted us as an organization to really pay attention to what was happening at some of our camps," she said.
Many of the camps with shoe-string budgets would have been in danger of not operating for the summer if they too lost the little funding they will now receive.
"They do lots of fundraising in their areas but it's never (as much as) what they would hope for, so the investment the province is going to make Tuesday will help," Spoelstra said.
July 10, 2007: Autism Ontario - Summer Camp Relief for Children with Autism
FOR IMMEDIATE RELEASE

For details of the program, click here.
SUMMER CAMP RELIEF FOR CHILDREN WITH AUTISM

Toronto, July 10, 2007 — At least 647 Ontario children with autism will now be able to attend summer camp.

This morning, Honorable Mary Anne Chambers, Minister of Children and Youth Services announced a total investment of $530,000 to subsidize camp programs and to assist families in paying for one-to-one workers who support their children with Autism Spectrum Disorder (ASD) to participate in summer camp programs in communities across Ontario.

Autism Ontario Chapters Will Receive Subsidies To Support Their Established Camp Programs
This summer has been particularly difficult for parents in the Dufferin, Hamilton, Niagara Region, Sarnia, and York Region chapters. While each chapter and its many volunteers work the entire year to raise the necessary funds to operate their summer camps, shortfalls in donations from federal contributions and corporate donations were leading to cutbacks in the number of children that could be served.

For example, Autism Ontario-York Region Chapter’s Camp AOK was planning to greatly reduce the number of children with autism that it could serve.

Paul Kalmykow, Camp AOK Committee Coordinator, said “The shortfalls were leaving us with very few options. For the first time in the program’s 20 years, we were considering cancelling services altogether.”

Upon hearing the news of the subsidy for their Niagara Region Camp Program, Mike Gowan, parent and Niagara Region Chapter President, said, “Last summer we offered placements for 30 children in our summer camps, this year the demand is for 72. This was stretching our budget beyond its limit. With this extra money, we will be able to continue to offer very specialized programs to Niagara’s children with ASD that desperately need summer learning services.”

Subsidies for an Additional 500 Children
In addition to the funding for the six Autism Ontario camp programs, at least 500 Ontario families with a child attending a community summer camp program may apply for reimbursement of up to $585 per child. Reimbursements will be given specifically to pay for one-to-one support workers hired to accompany their child with ASD to a community summer program.

“I have had so many families tell me that while they can often afford the camp fees, paying for a one-to-one support worker for their child is simply prohibitive,” said Deborah Kitchen, parent and Autism Ontario President.

“Without a worker, it is impossible for most children with autism to attend an integrated camp setting and to have a safe and positive learning experience. More often than
Ministry of Children and Youth Services
McGuinty government helping to send more than 800 children and youth with autism to camp this summer

RICHMOND HILL, ON, July 10 /CNW/ - The McGuinty government is investing
$530,000 in nine autism-support camps which will help send more than 800
children and youth with autism to camp this summer, Minister of Children and
Youth Services Mary Anne Chambers announced today.
"By investing in summer camps for children and youth with autism we are
strengthening and broadening the continuum of services available for children
and their families," said Chambers. "Summer camps not only help maintain
skills gained during the school year, they also give families a bit of relief
while their children receive expert care in a positive setting."
Approximately $210,000 will be used to support nine camps for children
and youth with autism across the province. The remaining $320,000 in funding
will be provided to Autism Ontario to reimburse families who hire one-to-one
support workers to enable approximately 500 children and youth with autism to
attend camp this summer.
"The province's investment will enable Autism Ontario to increase the
number of children attending camp and provide the one-to-one support staff
that our children require," said Autism Ontario Executive Director Margaret
Spoelstra. "Parents have told us many times that the respite provided by the
camps is extremely helpful to families involved in the day-to-day care of
children with autism."
"Our goal for the past 20 years has always been to provide a quality
summer camp experience for children and youth with autism at a reasonable cost
for their families," said Paul Kalmykow, a parent of a child with autism and
Coordinator, Camp Committee, Autism Ontario York Region Chapter. "This
generous contribution from the Ontario government will help us fulfill this
dream."
Other ways the government is working together with community partners to
support students with autism include:

<<
- Assessing all children referred to the Autism Intervention Program
since July 2005 regardless of age
- No longer discharging children from the Autism Intervention Program on
the basis of age
- Increasing the number of children receiving Intensive Behavioural
Intervention services to 1,200 - a 125 per cent increase since
April 2004
- Tripling the support for children with autism and their families since
2003-04 - increased funding to nearly $130 million in 2007-08
- Creating the Ontario College Graduate Certificate Program in Autism
and Behavioural Science and increasing the number of qualified
professionals graduating from the program to 220 by 2008-09
- Reducing the waitlist for assessment for the Autism Intervention
Program by 73 per cent since 2004
- Training up to 1,600 childhood educators and child care workers and
5,000 educational assistants who work with children with autism
through the Geneva Centre for Autism
- Providing nearly $6 million in further investments to allow school
boards to provide Applied Behaviour Analysis for students who need it
beginning in the 2007-08 school year.

"Parents have been telling us they want real choice when seeking services
for their children and we have listened," said Chambers. "Our government has
responded with investments in supports to help more children and youth with
autism and their families and to find ways of serving them better."

Disponible en français

www.children.gov.on.ca

Province to announce $530,000 in funding to allow 800 children to attend specialized summer camps
Jul 10, 2007 04:30 AM
Kerry Gillespie
QUEEN'S PARK BUREAU
Hundreds of autistic kids will get to enjoy swimming, sports days and other fun camp activities this summer because of provincial funding to be announced today.
Children and Youth Services Minister Mary Anne Chambers will announce $530,000 to help fund 800 kids in nine specialized summer camps across the province, the Toronto Star has learned.
"Summer camps not only help maintain skills gained during the school year, they also give families a bit of relief while their children receive expert care in a positive setting," Chambers said in a press release obtained by the Star.
In May, the Star reported that the "Yes I Can!" nursery school in Toronto, which has taken in autistic and low-income kids for its summer programs for more than a decade, was set to close because the federal government denied its request for its regular grant money.
When Chambers read about the 45 autistic kids who would lose their camp placements because of it, she said the province would save the camp by paying the $38,000 in missing funding.
Following that, other camps in need came forward, leading to today's larger funding pledge.
The funding, which is to be annual, breaks down like this:
$210,000 will go to the nine camps to pay operational costs.
$320,000 will be given to Autism Ontario to reimburse families who pay for a one-on-one support worker so their severely autistic children can attend camp. This portion will enable about 500 autistic kids to attend camp this summer.
"The province's investment will enable Autism Ontario to increase the number of children attending camp and provide the one-to-one support staff that our children require," Autism Ontario Executive Director Margaret Spoelstra said in the press release.
"Parents have told us many times that the respite provided by the camps is extremely helpful," she said.
The Liberals have made several autism announcements in recent years, including increased spending on therapy and training for support workers, but they had a rocky start with the issue.
During the 2003 election Premier Dalton McGuinty promised he'd provide intensive autism therapy to kids who needed it regardless of age. At the time, they were only eligible for the expensive one-on-one treatment until age 6. But McGuinty's delay in carrying out his promise led to a court case by angry families and many hard feelings.

End of Mailing.