Autism News Articles

NEWS posting- courtesy Nancy Morrison, May 2, 2010

2010-05-02T07:56:00.001-07:00

Globe and Mail as we neared the end of autism awareness month:

Teaching people about my autistic son

As I try to calm my screaming child on the sidewalk, I feel other parents’ eyes on me. They don’t know the whole story

Tracey McGillivray

From Wednesday's Globe and Mail Published on Tuesday, Apr. 27, 2010 6:01PM EDT Last updated on Wednesday, Apr. 28, 2010 7:59AM EDT

It’s almost the end of Autism Awareness Month, and what have I done?

I want people to understand my son and all the kids like him. But when people ask me questions, suddenly I’m the one with communication and social problems.

“What should I tell my son when he asks why your son doesn’t have to sing O Canada?” another mother asked one day a few years ago. We’d run into each other in the change room of our fitness club. I clutched the white towel closer to my chest and opened my mouth. Nothing came out.

She continued: “I told him some children are slower than others.” Here she looked at me sheepishly. “But my son said, ‘No way, Mom. Thomas is not slow. You should see him do tricky math!’ ”

As we laughed, I lowered my defences. We talked about Thomas’s sensitivity to noise, how brassy music blaring over the loudspeaker and the voices of 20 classmates, not all in perfect harmony, had sent him into hysterics the first day of senior kindergarten in a new school. How we were letting him stand in the hall and would slowly move him back into the classroom.

I described serenading him with our national anthem each night while he was in the tub. Without making a big deal about it, of course. That would trigger his anxiety and make it impossible for him to learn the lyrics.

For a moment we shared a tiny piece of what it’s like to have a child on the autism spectrum, where the simplest thing can be difficult. And I saw that she understood.

Too often, when we’re out in the world and something’s gone off the rails, I can’t turn to strangers around us and explain: What you’re seeing is not the whole story. But I feel the looks. And I think, If only you knew. Where we’ve come from. And how hard it’s been to get here.

Picture this: A mother crouches on the sidewalk beside her distraught son. He’s screaming, “I can’t have you in my life” at the top of his lungs. Other parents hold their children’s hands tighter and walk past, staring straight ahead. Mom seems calmer than the situation warrants. “Your voice is at a five,” she says. “It’s hurting my ears. Let’s take it down to a three.” The boy bats her on the arm. “I can’t have you in my life!” he yells again.

Please don’t think badly of these two. It’s just my son and me with our autism showing. One morning, he decided he wanted to walk to school by himself. The day before he had watched a movie with his older sister Emily in which a rebellious teenager told her parents, “I can’t have you in my life.” Thomas’s brain never, ever forgets a scene from a movie. So his thorough, but non-traditional, filing system retrieved this phrase to communicate today’s desire for independence.

But I didn’t know all that yet. “Try to say it another way,” I begged, folding him in a deep hug to calm him and keep him from running into the street. “Try to say it another way.” Slowly we found the words to understand each other.

“Say it another way. Show him. Give it a number.” This is the advice I share with the people in our lives. I translate convoluted instructions into simple, concrete words. Draw stick figures on scraps of paper. Thomas manages well when he knows what’s expected of him, and falls apart when the world makes no sense. We teach him to talk through the things that make him nervous. “Five rows of six questions,” he whispers, pulling out his homework. “I can do that.”

I learn to love incremental change. To realize we are all making progress. Last time we visited my parents I watched my father prepare to take Thomas to the store. He took a yellow sticky note and wrote a number on it. “This is how much money you can spend on a toy. Okay?” Way to go, Grandpa! I thought as I watched them head out, Thomas clutching the piece of paper in his hand. One potential meltdown avoided.

One night, as we struggled through a reading passage, I sighed. Thomas slammed a hand on the table. “You want to scrap me!” he said. After all our years of watching train videos, I immediately got the reference. I shook my head. No way. “How can you want to scrap me, your own son?” he asked, with a hint of a smile.

I was beginning to clue in that he was pushing my buttons when from the living room we heard Emily laugh. “Who would want to scrap a human being?” she asked. We shrugged our shoulders and got back to work.

I remind myself that children on the autism spectrum grow up. I read Temple Grandin’s books. Listen to Matt Savage play jazz. Watch Clay Marzo surf. They’ve all found their place.

My favourite blogger, Mom – Not Otherwise Specified, recently wrote about a visit to her son’s classroom to answer the children’s top 10 questions about autism. “Why does Bud say the same things over and over?” “Why does Bud run in circles?” My personal favourite: “How can I be a better friend to Bud?” Now there’s a mother who’s making a difference.

Here it is Autism Awareness Month. What have I done? Finally it hits me. This is the way it has to start. In one classroom. With one grandparent. In the change room, with two women realizing they are both just trying their best. Maybe, with a story.

Next time you see a mother and son creating a scene on the sidewalk, an understanding smile would make my day.

Posted on CBC website:

More money for autism services a surprise
Last Updated: Wednesday, April 28, 2010 | 12:17 PM AT
CBC News

An extra $308,000 in last week's provincial budget was a pleasant surprise, says the president of the Autism Society of P.E.I.

Jeff Himelman would now like to see some of that money go to giving people working with autistic children a raise. Currently, early intervention therapy is available through a preschool program, or parents can opt to hire a person on their own and apply for a grant to offset wages.

Either way, the province pays about $200 a week for the employee.

"Working only 20 hours a week, 10 bucks an hour: it's very hard to earn a living at those kinds of hours and wages," said Himelman.

"If they move on to another opportunity then parents are put in a situation where they have to go out and find a new person. There's a gap in the services, and then you have to re-establish that personal rapport between the therapist and the child."

Parents suspecting their children are autistic are waiting up to a year to have their children tested and diagnosed. The Autism Society says around a dozen children are participating in the early intervention preschool program, while a dozen more are waiting to be accepted into the program. Another 160 autistic children receive help in the school system.

Himelman expects the province to announce a new autism strategy once the budget is approved.

Read more: http://www.cbc.ca/canada/prince-edward-island/story/2010/04/28/pei-autism-budget-himelman-584.html#ixzz0mmI9bHu3

From the Sun papers, a miracle to share:

Autistic girl escapes abduction
By KENNETH JACKSON, QMI Agency

Brenda Zion hugs her daughter Katrina at the site where the 6-year-old girl was grabbed by a stranger on Saturday.

OTTAWA - A six-year-old's autism disorder may have been what saved her from a predator who family say tried to abduct the little girl.

Like some autistic children, Katrina doesn't like being picked up. After luring the girl away from a play area, that's what the man tried to do.

When he did, she started screaming, said her mother, Brenda Zion, 43.

The cries were heard by Zion's friend as the pair scoured the area Saturday night in Lowertown trying to find the missing girl.

"She just screamed automatically and that is what drew the attention of my friend to go that way. He yelled, 'Hey!' and the man dropped Katrina. He booked it," Zion said Wednesday.

The friend tried to give chase, but he was slowed down by Katrina.

The man got away, but police were given his description.

"Bad man grabbed hand," Katrina said after she was back with her mom. Zion said the man grabbed her daughter so hard he left a bruised handprint on her rib cage.

The man first took Katrina from a play area about 80 metres from Zion's home around 8 p.m. Saturday.

Back over at Zion's, a large group of adults and children were having a barbeque.

There were a couple of other children with the girl playing with Katrina's dog, Marbles.

The other kids got distracted when Marbles ran off and the man came up and took Katrina by the hand. He walked away with her toward the 300 block of Murray St.

Zion said she has trained her daughter to walk with people when they hold her by the hand.

Her children normally go to bed at 7 p.m., but Zion said she let them stay up for an extra hour.

"When you call my daughter she comes. When there was no response that's when I knew something was wrong," said Zion.

That's when she and her friend started their frantic search.

"He was walking away. Going somewhere with her," said Zion.

The man made it about a half kilometre.

The same man had come up to the girls minutes prior and petted Marbles.

Two days earlier, a man fitting the same description approached four young girls and asked them to dance for him. A neighbour chased him away, said Zion.

The suspect is white, in his late 30s, about 5-foot-10 with a shaved head and a muscular, stocky build. He was wearing a dark green sweater and light grey or blue jeans. He also had a dark goatee.

Anyone with information is asked to call police at 613-236-1222, ext. 5944 or Crime Stoppers at 613-233-8477.

kenneth.jackson@sunmedia.ca

I try to stick to Canadian published stories regarding anything autism. However, I am sharing this article from Maine, it's yet an another reminder of how important is is that we keep a watch on each other..... If you are feeling low, call or send an e-mail to someone. If you are not comfortable explaining this to close family or friends, then make contact with someone within the autism community, we understand each other better than anyone else. Let's all try to help each other keep each other and our kids safe.

Press Herald in Maine, USA

Police say the man, who also shot himself, may have been worried about
his son's care in the future.

By Dennis Hoey
Staff Writer

GRAY - A father shot and killed his autistic son Tuesday at their home
on Yarmouth Road before turning the rifle on himself, Maine State Police
said.

Cumberland County sheriff's deputies found the bodies of Daniel
McLatchie, 44, and his son, Benjamin McLatchie, 22, in the family's
driveway at 227 Yarmouth Road around 2:30 p.m.

The driveway, which is several hundred feet long, slopes down from
Yarmouth Road -- part of Route 115 -- before ending at a white,
two-story, Cape-style home surrounded by woods.

State police Sgt. Chris Harriman said the sheriff's deputies responded
to a 911 call. He did not say who made the call.

He said it appeared that Daniel McLatchie was upset about what would
happen to his autistic son after he and his wife died. He was a
stay-at-home father, Harriman said.

Daniel McLatchie's wife, Allison McLatchie, 45, was at work when the
shootings happened.

Harriman said she is a teacher at the Collaborative School on the
Pineland Campus in New Gloucester. According to its website, the school
serves students from ages 5 to 19 who are eligible for special education
services because of emotional or related disabilities.

Deputy Chief Medical Examiner Marguerite Dewitt examined the bodies in
Gray. She determined that McLatchie and his son died from gunshot
wounds. A rifle was found near the bodies.

The bodies were taken to Augusta, where the state Medical Examiner's
Office is expected to do autopsies today.

Harriman would not characterize the shootings as a murder-suicide, but
said during a press conference, "We do believe there were no other
people involved."

Mary Keith has lived nearby on Yarmouth Road for 10 years, but said she
never got to know the McLatchies. She said the family moved into the
neighborhood about six years ago.

Ginger Taylor of Brunswick, who writes the blog "Adventures in Autism"
and whose 8-year-old son has been diagnosed with autism, said she
doesn't know the McLatchies, but noted there are pressures for families
with autistic children.

"Having an autistic child is, on a social level, very hard because it
can be very isolating. You don't get to be part of those social circles
anymore and you can't participate in the life of the town. There are
just so many challenges," said Taylor, who has organized Greater
Brunswick Special Families, a support group for parents of autistic
children.

She said there is "a huge tidal wave of autistic children born in the
1980s and 1990s who are coming of age." Parents who care for autistic
children at home need greater support, such as respite care and
counseling, she said.

Taylor said one of the most common fears for parents with autistic
children is what will happen to the children after the parents are gone.

"That is the big question -- what happens to our child when we die," she
said. "We understand their needs better than anyone else. It really
breaks my heart hearing what happened to this family. It shouldn't be
like that."

Staff Writer Dennis Hoey can be contacted at 791-6365 or at:
dhoey@pressherald.com

Last week CTV morning show ran a week long series about autism. Here is the link to their online version of the coverage:

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20100422/autism_canada_AM_20100422/20100427/

Montreal Gazette:

Facility lacks permit to operate above garage

By Brenda Branswell, Gazette Education ReporterApril 26, 2010

Teacher Dayle Wiltshire writes notes in student journals as her son, Zachary Tremblay, plays after the end of the school day at Interact Alternative Learning Centre Monday.
Photograph by: John Kenney, The Gazette

MONTREAL With just two months left before the end of classes, a tiny private school in Notre Dame de Grce is being forced to close because it doesn't have a government permit to operate.

For the eight students who study above a garage at the Interact Alternative Learning Centre Inc., it will mean finishing the school year somewhere else as their parents scramble to find an alternative.

It's the most terrible time to have done this, said Raj, who didn't want his last name published so as not to identify his son, who has Asperger syndrome.

It's a trauma (for) the kids. They're really, really worried, said Raj, who said he wishes the government had waited until the end of the school year.

The school caters to students with special needs from Grades 1 through 8.

The Education Department revoked its permit at the end of last August because its new location on Girouard Ave. isn't zoned for a school.

Interact director Margaret Blair said it kept operating because we thought we were going to be able to get the rezoning and then I could go back to the ministry and re-apply for the following year at least. Parents were told of the situation, Blair said.

The government initially gave the school 10 days to close in March, but Blair said it got a reprieve until Friday.

The school teaches Quebec's curriculum and has had a permit in the past, Blair said. It moved into its current space in September 2008 and discovered it wasn't zoned for a school when they went to renew their permit, which expired in 2009, Blair said.

The school had started working with the city on the rezoning issue, Blair said. An official with the C´te des Neiges/Notre Dame de Grace borough told The Gazette its preliminary analysis deemed it was an acceptable change.

There really aren't any bad guys in this, Blair said.It's just incredibly bad luck.

Blair acknowledged the school wasn;t aggressive enough in the matter, adding she looks after teaching duties during the day as well as the administration work. Her daughter, Dayle Wiltshire, teaches at the school.

Blair founded the school in 2000. It's typically behaviour issues that land students there. We have the bullies and the bullied working together. Some of them are just high anxiety.

All these kids need is somebody to say, 'You're okay and you can handle yourself okay.' And (these are) just a few little things that you have to remember along the way.

And they fly. Most of our students now are in CEGE.

Some of the students may be home-schooled for the rest of the year and school boards may find other schools for them for the two months, Blair said.

Parents are still hoping to save the school.

I feel good in it, said Grade 2 student Felix Brown, 8. It's just a nice place to be. I like the teachers.

His mother, Zoe Brown, said the public school system couldn't meet his needs and accommodate his learning style. But at Interact he's thriving. He was devastated to know Interact will be closing, Brown said.

bbranswell@thegazette.canwest.com

From Winnipeg:

Winnipeg Free Press - PRINT EDITION
Province still contemplating funding for autism program

By: Sean Ledwich

30/04/2010 1:00 AM | Comments: 0
Hailey, Wendy and Kevin Augustine, with their dog Bleue, at their home in Oakbank.

TREVOR HAGAN / WINNIPEG FREE PRESS Enlarge Image

Hailey, Wendy and Kevin Augustine, with their dog Bleue, at their home in Oakbank.

Parents of autistic children are anxiously waiting to hear if the Selinger government will continue to offer a specialized program to their school-age children after their eligibility expires in June.

The program, introduced in June 2008, provides a consultant from the St. Amant Centre to assess autistic children and develop individualized strategies to help students behave and learn. The consultant works directly with educational assistants in the school and with parents in the home.
Yearly cost of specialized autism programming per child

Home tutor -- $6,000

St. Amant Centre consultant and administration -- $23,000

Educational assistant -- $19,000

St. Amant Centre costs and home tutoring are funded by the Department of Child and Family Services. A home tutor allows the school-age program to continue at home on evenings and weekends for 10 hours a week.

An educational assistant (EA) is funded by the Department of Education and in most cases would be provided to an autistic child regardless of the program.

A full-time EA is required for each student in the program, but moving out of the program does not necessarily affect that child's elegibility for an EA.

-- Source: St. Amant Centre

Children are currently eligible for three years of programming or until they reach the end of Grade 4, whichever comes first. At the end of this school year, 38 children will become the first batch to lose their eligibility.

Kevin Augustine, president of Manitoba Families for Effective Autism Treatment, said some of those 38 children will continue to need the programming.

"There's probably a high potential for regression, and you'll see (negative) behaviour coming in," said Augustine, whose daughter Hailey, 10, will exit the program in June. He worries teachers and educational assistants without the training and background to deal with autism will result in children being removed from classrooms.

In November 2008, the province asked the association, which represents 146 families of children with autism, to provide input. Augustine said a proposal was delivered to government in September 2009. The proposal, created in collaboration with St. Amant Centre and provincial representatives from multiple departments, included ways to save money.

"The government won't be on the hook until these kids are 18," he said.

"Some kids in the program now are doing really well and can transition to regular support, but for the ones who aren't, you can't leave them hanging."

Education Minister Nancy Allan said the government is working on an answer.

"I know they are tired of being patient, but they just have to give us an opportunity to work through it," said Allan.

Tory Leader Hugh McFadyen doubts the province will extend the program.

"It's clear this is a therapy that works for autistic kids and their families. The NDP is pulling the rug out from under (them),'' McFadyen said.

sean.ledwich@freepress.mb.ca

From the Edmonton Journal:

GPS tracks autistic son who runs

Fearful family relies on device when teen disappears

By Jodie Sinnema, Edmonton JournalMay 2, 2010

Edmonton Journal / Gord Wyatt, rear, tests a GPS system to keep track of his autistic son, 17-year-old Ian.

Edmonton Journal / Gord Wyatt, rear, tests a GPS system to keep track of his autistic son, 17-year-old Ian.
Photograph by: Shaughn Butts, Edmonton Journal

Ian Wyatt is an experienced runner.

Across six lanes of highways, miraculously unscathed. Into a stranger's house and onto the couch to watch his favourite shows on the Treehouse channel. Sometimes barefoot or shirtless. Often in his pyjamas. Always to the horror of his family.

Ian has severe autism and limited speech -- although he can dramatically recite the opening of the Law & Order TV show -- and each year, his family knows he'll bolt out of his secured house and disappear.

Until recently, the running episodes typically happened during daylight hours in the spring and fall. The Wyatts work on preventing the escapes by having a complex system of locks on all their doors leading outside, and even keep the keys in a locked food pantry that can only be opened with a numbered code.

But this January during a -30 C night, Ian disappeared in his pyjamas, boots and coat.

Gord and Gail Wyatt went immediately to Ian's usual running targets: neighbourhood houses that, for some reason, Ian has become fixated on. But there was no Ian munching on an apple, pillaged from a stranger's fridge.

Then they called police.

Ian eventually -- and for the first time -- returned home on his own, where his parents found him in the garage.

"He was either scared or really cold and knew he was in trouble," said Gord Wyatt, father to the 17-year-old. "It's absolutely terrifying."

Those heart-pounding, fearful moments prodded the Wyatts to try a GPS system that is capable of tracking Ian when he runs.

The Eye-Zon device, made available to three local families through a pilot program at the Autism Society of Edmonton Area, is smaller than a cellphone and can be tucked into a pocket or slipped around the neck with a lanyard. It sends information by satellite to a computer or cellphone, and provides Ian's running path and location on a map, as well as his speed.

"When people go missing, it takes a lot of resources to find them," said Karen Phillips, program director of the autism society.

Phillips worked with Edmonton Police Services to find solutions. The autism society borrowed three GPS devices from Eye-Zon to test them out. Eye-Zon is also considering contributing a portion of their proceeds from the devices to the autism society to help families who can't afford the units, Phillips said.

Although Ian wears the device around his neck at school, it's too big and awkward for him to keep it on in bed at night. Sewing little pouches onto various pieces of clothing to hold the device might only work in some situations.

"Short of a GPS chip like what Jason Bourne had in his back, what do you do?" Gord Wyatt said in jest, referring to the action film featuring a secret agent who is tracked through an electronic chip implanted under his skin. Yet Gord Wyatt is still optimistic the Eye-Zon device could help keep Ian safe.

"It has the potential to be very valuable for families who have kids who run," Gord Wyatt said.

Richard Rosenberg, a retired computer science professor from the University of British Columbia who works on technology and privacy issues for the B.C. Civil Liberties Association, agrees, even though he questions the use of such tools in more typical families.

"These are the special cases that are important to take account of," Rosenberg said. "I'm not an absolutist that you should never use it. Clearly, the cases with autistic children, with Alzheimer's patients or old people, they are the ones that need special care and such devices are very useful in monitoring where they go because they really can't take proper care of themselves."

In regular families with able-bodied children, using tracking devices -- such as a new system called Amber Alert GPS developed by a Vancouver-based company -- restricts freedom and indicates a lack of trust and unhealthy family relationships, Rosenberg said. Believing that such a system would save an abducted child is an error, he added, since the abductor would likely be aware of such technology and immediately destroy or disable it.

Gord Wyatt said he would never dream of using the GPS device on his 18-year-old daughter or 13-year-old son.

Ian doesn't know about road safety. Luck kept him safe in Calgary when he ran away barefoot near the busy intersection of Macleod Trail and Anderson Road. Six people driving by called 911 on their cellphones.

"Usually, Ian depends on the world helping him," Gord Wyatt said. Strathcona County RCMP officers have delivered Ian in their squad cars. The families who routinely find Ian in their house have been kind and phone the Wyatts to alert them. But Ian is becoming a bigger teenage boy and could legitimately scare people should he walk unbidden into their house.

jsinnema@thejournal.canwest.com

A listmate shares his business venture

I am contacting you regarding my math learning tool called Tactico which is a board and computer game in 71 schools including corrections Canada. Tactico has had rave reviews from senior scientists to school officials. My son john has Autism and Tactico has helped him with math. In fact he can beat most people at the game. Tactico is great for special needs children. and is a great family strategy game as well. See my web mytactico.com.

PBS vaccine show link:

http://www.pbs.org/wgbh/pages/frontline/vaccines/interviews/handley.html

A fundraiser for New Haven:

Dom Pérignon is proud to be hosting a fundraising event for the New Haven Learning Centre. The event is priced at $175 per person and will be taking place at The Berkeley Church. From 6-9pm, Dom Pérignon will be providing their high end and specialty brands of champagne, complemented by hors d'oeuvres and live musical entertainment and a live auction. This event is a wonderful opportunity not to be missed!

To view the invitation and get further details please click the link below

http://evite.pulpandfiber.com/DomPerignon/

Hope to see you all June 1st!

Here is a link to a website for autism awareness items. Also note the impressive list of organizations they have donated the proceeds to. This is a parent making a huge impact in awareness and donating all the proceeds of her work back into the community.

Good Day!
A quick update from www.AutismAwareness.ca !

We have a few new products in our line up.

~Puzzle Ribbon style earrings
~A new style Enamel Ring
~A new style puzzle ribbon cell charm

And don’t forget the seasonally popular golf towels and ball caps!

Also, we have extended our FREE HAT and FREE BAG special for one more week. See the website for more details! www.autismawareness.ca

Info shared by a listmate:

A new Centre specializing in services for children with Autism is opening in Vaughn in Early April.
Autism Therapy and Training Academy (http://autismtt.com) is a private school specialized in Intensive Behaviour Intervention (IBI) using Skinner’s analysis of Verbal behaviour.
It is located at 6175 Highway 7, unit 18A (Hwy 7 and Hwy 27) in Vaughan.
There will be an open house on July 5th; Registration is already open and will continue until June 2nd.
The founder of this Academy, Chaza Attar, is in the final stages of getting her BCBA.

You can contact Chaza at 416-723-3464 or via Email at chaza@AutismTT.com
--------------------------------------------------------------------------------

Nancy Morrison
Bradford, ON

Visit: Phil Morrison @ Sussex Home Improvement
(905) 252-8989
(416) 409-4399
www.youtube.com/sussex

Autism Town Hall Meeting Oct 28 09-POSTPONED

2009-10-03T19:53:00.000-07:00

THIS MEETING IS POSTPONED, STAY TUNED FOR UPDATES.

AUTISM TOWN HALL MEETING WITH
MINISTER MATTHEWS AND MINISTER WYNNE
WEDNESDAY OCTOBER 28, 2009

The Alliance for Families with Autism (AFA) is pleased to announce we are hosting a Town Hall Meeting regarding the issues surrounding autism on WEDNESDAY, OCTOBER 28, 2009. The meeting will include Ministers from the Ministry of Children and Youth Services (MCYS) as well as the Ministry of Education (MEDU).

In attendance will be Hon. Deb Matthews, MCYS , Hon. Kathleen Wynne, MEDU, Hon. Madeleine Meilleur, MCSS (invited).
All parents, families and interested individuals are welcome to attend this event. This is an opportunity for the autism community to voice their concerns with regards to current programs and receive an update from both Ministers regarding the direction of their ministries for the future.

The Alliance for Families with Autism (AFA) is a volunteer organization. Our mission is improving the lives of children and adults affected by autism. We continue to provide information to all stakeholders.

TIME 6:45-8:45

WHERE Boardroom and Atrium
Peel DSB
HJA Brown Education Centre
5650 Hurontario Street
Mississauga, Ontario, L5R 1C6
(south west corner of Hwy. 10 and
Matheson Blvd
(see map)-- Google search Peel District School Board

For more information please contact:

Lisa Prasuhn (905) 729-4029 lisa.prasuhn@sympatico.ca
Trish Kitching (705) 222-9432 ktchmeifucan2002@yahoo.ca
Pat La Londe (613) 372-5580 palalonde21@aol.com

BIG TENT - new update

2009-08-08T06:58:00.001-07:00

For those that are interested in joining the Big Tent Meeting tomorrow via the internet, here is the latest update to link in. For any further updates or clarifications, please refer to the Ontario Autism Coalition website:

Remote Connections
We'll have a live blog at http://thebigtentmeeting.blogspot.com/

I also promised a live chat. I've decided to use www.meebo.com -- it's a portal to a wide range of chat services including Facebook, GoogleTalk, msn chat & Yahoo chat. I've set up accounts for those four only. If you chat with my account on any of those, you don't get the whole thing, but if you get an account on Meebo you're going to see all the individual chats combined.
On Meebo: The chat room is called "Big Tent Meeting" in the "Tech" section
On Facebook, I'm Bruce McIntosh
On msn, I'm bruce_mcintosh@hotmail.com
On GoogleTalk, I'm bigtentmeeting@gmail.com
On Yahoo, I'm bruce_mcintosh2003@yahoo.com

BIG TENT UPDATE!!!!

2009-08-06T19:33:00.001-07:00

A message about the Big Tent Meeting on Saturday..... for those of you outside the GTA who would like to participate:

Subject: Great News about our Meeting!

Today has been a busy day of pre-meeting preparation. We're happy to announce the following:

1. We WILL have an internet connection at the meeting, which will allow us to post a live blog about the event. We're also working on putting together a chat feature that may allow those of you who are out of town to communicate with us while the meeting unfolds. Here's the URL for the blog site (you'll also be able to find the link at the OAC website)

http://www.facebook.com/l/;thebigtentmeeting.blogspot.com/

2. We received confirmation today that Suzanne Lanthier, Executive Director of Autism Speaks Canada, will be joining us at the meeting. For those of you interested in lobbying at the federal level, this will be a great opportunity to hear about the plans that Autism Speaks is developing for more advocacy on the national scene.

3. We also have representatives who will be attending from a variety of other organizations: Autism Ontario, the Alliance for Families with Autism, and Autism Resolution Ontario. We're really excited by the wide-cross section of advocates who will be with us on Saturday.

4. Thanks to a generous contribution from Autism Speaks, we will be able to provide coffee and lunch for up to 50 participants. It's a simple box lunch--small sandwich, chips and a drink, but it allows us to keep everyone on site, which will save us a lot of time. As a result, we're tightening up the agenda so that we can end earlier. (See our website for the revised agenda)

5. We've had over 60 responses to our pre-meeting survey, and it's telling us that there is a very high level of consensus on the goals and objectives we should be working towards. Thanks very much to all of you who have taken the time to complete it. For those of you who haven't had a chance, we'd really appreciate it if you could try to do so before tomorrow night. Here's the survey link, one more time:

http://www.facebook.com/l/;www.surveymonkey.com/Home_Landing.aspx?sm=BpzUk%2bAef8VfWgkjHpJb0Q%3d%3d

Please remember to RSVP to this event if you haven't done so already. We look forward to seeing lots of you on Saturday, and we hope to chat on-line with those of you joining us from far away.

Peace,

Bruce & Laura

August 2nd AUTISM NEWS courtesy Nancy Morrison

2009-08-03T06:48:00.000-07:00

A reminder of the Big Tent Meeting happening this coming Saturday. I have copies the last two paragraphs of the invite as sent out most recently by OAC below. Please remember to fill out the survey, especially if you are unable to attend the meeting, and if you are able to attend, please also RSVP. Hope to see all of you there!!!

To that end, we want to invite you to a meeting. One day--Saturday, August 8th, 2009--with some of the most experienced, energetic and outspoken autism advocates in Ontario. All you need to bring is an open mind and your ideas. Together, we'll lay out a road map for the next wave of autism advocacy in Ontario.

We sincerely hope that you can join us on Saturday, August 8th from 10am to 4pm. The location will be Bloorview Kids Rehab. If you are unable to attend, we'd still very much appreciate it if you could complete the pre-meeting survey on our website. (www.ontarioautismcoalition.com)

A reminder of the 20/20 show this week that will air the story about Carly Fleischmann, here is a reminder message from her mother Tammy Starr:

This footage was shot in March of 2008 and last weekend. Should be a great segment. Please feel free to pass this on to anyone who might be interested as well as

www.twitter.com/carlysvoice
www.carlysvoice.com

Thanks so much,
Tammy and Arthur
Interesting how Carly's greatest gains started at age 10 and continue to occur!!!!

And what a segway into this posting from another list, a research project from U of W regarding speech development:

Evaluating Language In Children With Autism
Main Category: Autism
Article Date: 11 Jun 2009 - 4:00 PDT

A new parent questionnaire, developed at the University of Waterloo, will
help health practitioners to more accurately gauge the acquisition of
language skills in children with autism.

The pioneering Language Use Inventory (LUI) is among a set of measures for
evaluating spoken language development in children with autism spectrum
disorders, recommended by an expert panel.

The experts' report, Defining Spoken Language Benchmarks and Selecting
Measures of Expressive Language Development for Young Children with Autism
Spectrum Disorders, appears in the June 2009 issue of the Journal of Speech,
Language and Hearing Research. The report was commissioned by the National
Institute of Deafness and Other Communication Disorders.

"This is very exciting news," said UW professor Daniela O'Neill, a
developmental psychologist who created the LUI. "This report will be of
tremendous help to researchers, clinicians and speech-language professionals
involved in intervention with young children with autism and we are very
proud to see the LUI included among the measures recommended for evaluating
the efficacy of interventions that target spoken language."

The LUI is a standardized questionnaire that asks parents about their
child's use of language in many different kinds of settings. Research from
the Centers for Disease Control suggests the prevalence of autism spectrum
disorders to be one in 150 children.

"The LUI looks at pragmatic language development which has do with how young
children are able to use their language effectively and successfully in
everyday interactions with other people in ways that are age-appropriate and
typical," O'Neill explained. "For example, to ask for help, comment about
noticeable things, tease, tell stories and give others information they
might need. The pragmatics of language can be an area of great difficulty
for children with autism."

Difficulty with learning language and communicating with others is often one
of the first things that parents become concerned about. Parents have much
valuable information to offer about their child's language use to
professionals evaluating their child. "A parent has had the most experience
watching their child try to use their language in a host of different
settings and with many different people."

The LUI provides speech-language pathologists and researchers with a new
tool to evaluate a young child's broad pragmatic use of language. As many as
14 per cent of preschool-age children in Canada and the U.S. may be at risk
for language disorders.

The LUI is the product of more than eight years of research funded by the
Canadian Institutes of Health Research. The development of the inventory
included a large-scale study in which more than 3,500 parents from across
Canada completed the questionnaire describing their child's language
ability.

"This study will help us understand unexplored ways of identifying language
skills in children with autism," says Dr. Michael Kramer, Scientific
Director at the Canadian Institutes of Health Research. "Our support for the
development of the Language Use Inventory helps keep us on the forefront of
research on autism in young children. This research will also provide
unprecedented insight into language acquisition in typically-developin g
Canadian children as well as those with communication disorders and other
disabilities, " said Dr. Kramer.

"The tremendous response we had from parents all across Canada has allowed
us to provide norms for the LUI at every month from 18 to 47 months of age,"
O'Neill said. "We were amazed by how eager so many parents were to take
part. I think the issue of how children learn language is just as
fascinating to parents as to researchers and also many parents can relate to
the anxiety of wondering if perhaps a child is experiencing language
difficulties or may be falling significantly behind their peers."

The LUI allows a comparison of a child's score with children of the same
age - similar to height and weight charts used by family doctors.

Family practitioners in the Kitchener-Waterloo are involved in preliminary
studies looking at its use in doctor's offices. "Both doctors and parents
are enthusiastic about the possibility of learning more about how a child's
language is progressing relative to peers of the same age through a friendly
and easy-to-use questionnaire, such as the LUI."

Source:
David Coulombe
Canadian Institutes of Health Research

From Parent Central, Alberta seems to be ahead of Ontario on so many fronts in dealing with our children.......

Alberta ahead on care of disabled children

July 29, 2009
Tanya Talaga

Queen's Park Bureau

Families in Alberta who faced giving up parental rights to get medical care for their severely disabled children convinced the province to change the law to let them keep custody of their kids and get help to pay for their care.

But parents in Ontario say they are still struggling to be heard.

Under Alberta's Family Support for Children with Disabilities Act, parents who can't afford steep medical bills for children needing round-the-clock care are given assistance outside of child welfare.

Alberta recognized children with disabilities are different from children who need to be placed under protective services by child welfare, said Trevor Coulombe, a spokesman for Alberta's ministry of children and youth services. The act provides parents with funding to access services.

Ontario Ombudsman André Marin recently revealed in his annual report his office was contacted by 24 families who feared they would have to give up custody because they can't afford care.

Marin's office has worked with the province to individually resolve cases but he wants to see an overarching policy to help these families and others.

Ontario Minister of Children and Youth Services Deb Matthews is committed to ensuring no parent has to give up a child to get service, said Kevin Spafford, a ministry spokesman, who added Ontario is looking at what other jurisdictions are doing in this area.

An interesting letter exchange printed in the Toronto Sun for your reading enjoyment:

Comment Letters

Letters to the Editor

By SUN READERS

Last Updated: 31st July 2009, 3:10am

PREPARING OUR STUDENTS

Moira MacDonald gets it wrong when she characterizes the proposed Student Achievement and School Board Governance Act, or Bill 177, as a "kid glove version" of the No Child Left Behind Act in the U.S. The purpose of Bill 177 is to clarify the mandate of school boards to emphasize their responsibility for student achievement. No parent or educator would disagree with this focus. We're working with our education partners to establish indicators that would be used to determine student achievement. Unlike No Child Left Behind, our intention is to provide a continuum of supports to school boards, not punitive measures. It's in everyone's best interest to ensure that boards have the most effective practices in place to support student achievement. Test scores are an important measure of achievement, but we are also looking at measures of student well-being. We've set increased levels of achievement as a primary goal for Ontario 's publicly funded school system -- by doing so we will continue to produce students who are good citizens and ready for the challenges of the 21st Century.

KATHLEEN WYNNE

MINISTER OF EDUCATION

(Moira specifically said your government's stated intentions are less extreme than No Child Left Behind. She also suggested your ministry, in implementing the policy, might well screw it up. We agree. After all, it's not as if it hasn't happened before )

From the Toronto Star, more on the story about the Wood family:

End of benefits for disabled girl perplexes dad
TheStar.com - News & Features -

End of benefits for disabled girl perplexes dad

Grace Wood, 11, has a rare genetic disease called DiGeorge syndrome that causes heart and lung problems, resulting in prohibitive medical expenses.
Aid cut off because their income surpasses limit to get help from program, struggling family told
July 30, 2009
Tanya Talaga
Queen's Park Bureau

Peterborough resident John Wood wants to know why his family was suddenly cut off from a government benefit that helped them pay for his daughter's prohibitive medical expenses.

Grace Wood, 11, has a rare genetic disease called DiGeorge syndrome that causes heart and lung problems. Her health costs are a financial struggle for the family. Special dietary requirements and drugs can cost upwards of $2,000 a month. Private insurance only goes so far.

In April, Wood, who works for Pepsico Foods Canada, says the family suddenly lost the $410 monthly cheque they received under the Assistance for Children with Severe Disabilities (ACSD) program, an income-based program intended to help low- to moderate-income families. The cut-off for eligibility for a family of four is $62,641.

The Woods' family income is $64,425.

The benefit was also based on the severity of the child's illness and the extraordinary expenses faced by the family, but that doesn't seem to apply any more, Wood said.

"We qualified up until April of this year," he told a Queen's Park news conference yesterday.

"In April this year, that changed when we were informed our income precluded eligibility. There was no discussion of extraordinary expenses or how disabled Grace had become or what her medical needs were going to be in the coming months," Wood added.

Next month, Wood and Grace will fly to Edmonton for a heart valve replacement procedure. Grace had her first open heart surgery at 14 months of age and she's had 24 heart procedures to keep her arteries open.

Children and Youth Services Minister Deb Matthews said the program is designed to help only low- to moderate-income families for kids with severe disabilities.

There is a slow phase-out of financial support as income rises to the cap, she said.

"The way the program is portrayed is you get $410 a month, then nothing. It doesn't work that way," Matthews said.

"This is a program designed to support families with financial challenges as well as a child with disabilities."

The Liberals have increased spending on the program from $63 million to $90 million and as a result, 5,000 more disabled children are being helped.

"This is a program we continue to invest in," said Matthews. "Is it enough? Should it be more? Those are the decisions we struggle with every year at budget time."

"The government should acknowledge their programs need to be updated and overhauled," New Democratic Leader Andrea Horwath said yesterday.

The Star continues to print letters in relation to the ACSD debate:

Families with disabled kids need help TheStar.com - Opinion - Families with disabled kids need help
August 02, 2009

Re:End of benefits for disabled girl

perplexes dad, July 30

I am stunned that the Ontario government has yet to modify the income threshold for families qualifying to receive the Assistance for Children with Severe Disabilities (ACSD) benefit.

Caring for a disabled child with severe medical issues at home is terribly expensive: prescription formula can run more than $1,500 a month, a seating system and wheelchair can easily cost more than $10,000 a year as your child's body grows, and prescription drugs cost hundreds or thousands more. ACSD helps with a portion – yes, portion – of these costs.

To limit the earning potential of a family to $62,641 (before taxes, by the way) is ridiculous. If both parents work, this pretty well forces them to keep their status quo, not applying for or accepting promotions and pay raises. If doing so meant your child would no longer have prescription drugs, dental care, specialized food or a wheelchair that fits, would you?

I know this because from 1997 to 2004 our daughter received this benefit. Her medical costs were more than $25,000 each year.

Miranda died five years ago, and there is one thing – and only one thing – I am thankful for with her death: that we no longer have the daily worry of how we could manage financially and keep our daughter alive.

Laurie Ann Milne, Timmins

From ARO last week:

TORONTO, July 29 /CNW/ - A new documentary on the challenges of one child
with autism in trying to access publicly subsidized autism therapy effectively
captures the Ontario government's inadequate, harmful and discriminatory
autism intervention policies, and raises fresh concerns about the ongoing and
extreme neglect of all children with autism in Ontario waiting to receive this
essential treatment.

Jaiden's Story: The Struggle for ABA Therapy in Ontario is a brief and
compelling portrait of three-year-old Jaiden, who has been waiting for
provincially funded applied behaviour analysis (ABA) therapy since September
of 2007, and whose family is trying to cope with the government's abandonment
of their son and with the high cost of private ABA therapy.

"Jaiden needs ABA therapy to learn how to communicate and socialize
appropriately with others, and to function in society. By making my son wait
for years for this crucial therapy, the government is neglecting his basic
developmental needs, severely compromising his future prospects, and
ultimately, violating his fundamental human rights," says Sharon Aschaiek,
mother of Jaiden.

ABA is the most established, scientifically proven and effective autism
intervention that is widely used by children with autism worldwide. Children
with autism benefit most from ABA when they receive it intensively-about 30
hours a week of one-on-one instruction-beginning in their early years.

As demonstrated in Jaiden's Story, which can now be seen on the News
section of the ARO site (www.autismresolutionontario.com) or on YouTube
(www.youtube.com/watch?v=IgLJrIJsOvs), while Jaiden languishes on the waitlist
for the Ontario government's intensive behavioural intervention (IBI)
program-IBI is the early and intensive application of ABA-Aschaiek helps her
son in the only way she can-by paying for private ABA therapy. However, early
intensive ABA is costly: currently, Aschaiek spends about $20,000 a year, and
that cost will increase as Jaiden gets older and is able to participate in
more therapy.

As a single mother of limited means, Aschaiek was forced to move with her
son into her parents' home in Thornhill to save on cost-of-living expenses.
She now spends almost every cent she makes on therapy for her son, but she
says it's entirely worth it, as Jaiden is making significant developmental
gains with ABA. However, because Ontario government will continue denying
subsidized intervention to Jaiden for many more months or even years, Aschaiek
worries about how she'll pay for Jaiden's future therapy.

"Even with the minimal amount of ABA therapy I can afford, Jaiden has
advanced so much. Thanks to ABA, he can now express himself much better, and
he's more interested in family and friends," Aschaiek says. "However, when
Jaiden will require $30,000 to $50,000 worth of therapy a year, I won't be
able to afford it. Without receiving enough of the ABA therapy he needs to
develop and function, Jaiden will be at serious risk of losing the skills he's
gained, and failing at school and in adulthood."

Jaiden is far from alone in his lengthy wait for vital ABA treatment:
currently, about 1,500 children with autism in Ontario are waiting to
participate in the provincial government's subsidized IBI program.
Disturbingly, that's more than the number of children actually receiving it -
about 1,300. About another 400 children are actually waiting to wait - that
is, they are waiting to qualify to get on the IBI program waitlist.

"The wait for my family has meant that my wife had to resign her job, my
mother exhausted her retirement savings, and we have exhausted all our savings
and retirement funds - all to self-fund/deliver our son's therapy," says
Mississauga-based Barry Hudson, father of Barry, 4. "So, not only does my
son's therapy still need funding, but I, my mother and my wife will require
income supplements in our retirement. In summary: the ABA wait list crisis
equals pay much more later."

Aschaiek and Hudson are just a couple of the hundreds of highly motivated
parents across the province who are involved Autism Resolution Ontario (ARO),
a new grassroots, non-partisan advocacy initiative working to make publicly
funded ABA therapy more accessible, and to achieve social justice for children
with autism. ARO is leading an ongoing, high-impact, province-wide public
awareness campaign to promote the benefits of ABA as the most proven and
effective autism intervention; to expose the government's neglectful and
discriminatory autism intervention policies; and to promote practical and
cost-effective solutions-based on existing studies and reports-to resolving
the autism crisis in Ontario.

Jaiden's Story is the first documentary in what is planned to be a
three-part series that will fully explore the most pressing ABA
inaccessibility issues facing children with autism in Ontario and their
families.

Aschaiek echoes Hudson's sentiment that, ultimately, the Ontario
government's denial of early intensive ABA to children with autism is a
problem that affects everyone, because taxpayers will have to pay millions of
dollars more down the road to sustain these individuals as adults.

"With sufficient ABA, our children have much better chances of becoming
independent and contributing members of society," Aschaiek says. "Without it,
the government is condemning them to a lifetime of dysfunction and social
services dependency."

For further information: To learn more, or to book an interview with
Sharon Aschaiek or other ARO family members, contact Sharon Aschaiek at (416)
352-8813 or sharon@autismresolutionontario.com

Forwarding a copy of ARO's most recent newsletter:

August 2, 2009
Autism Resolution Ontario (ARO) family newsletter

Greetings,

In this message, wed like to tell you about:
1. Violating our children’s rights: Let us count the ways—new
information document
2. Collaborative autism advocacy effort
3. Have your say—new ARO poll

1. A new information document developed by ARO outlines all of the
various Ontario and Canadian legislative documents and UN convention
documents that the provincial government is violating, and as a
result, blatantly infringing on the human rights of children with
autism. This eye-opening and compelling document can be found on the
ARO website, www.autismresolutionontario.com—go to Resources, then ARO
Articles, and it’s the third item featured.

2. A movement is afoot to launch a collaborative effort to advocate
for individuals with autism in Ontario. Taking place in Toronto on
August 8, the goal of the all-day event, which is open to all members
of the autism community, is to establish shared advocacy goals and
organize specific advocacy projects to which people can contribute
their time, skills and energy. To learn more about how to get
involved, visit The Big Tent Ontario Autism Meeting on Facebook, or go
directly to http://www.facebook.com/s.php?q=big+tent+autism&init=quick#/event.php?eid=133335076396&ref=search.

3. ARO has put up a new poll on its website that has to do with the
safety of children in ABA centres and the regulation of the ABA
profession. Currently, preschool and school-age children at ABA
centres do not enjoy the protection of government oversight, and this
can be a cause for concern for the parents of these vulnerable
children. We are asking the following question: Schools, nurseries and
daycares in Ontario are regulated by the government to protect and
benefit the children they serve. Should ABA therapy providers also be
regulated by the government? To have your say, visit
www.autismresolutionontario.com and go to Resources, then
Polls/Surveys.

A note sent out by Autism Speaks head office, we were asked not to share it until after noon on July 30th, sorry that I have not been online to get it out to everyone on this list sooner. My apologies if you have seen this from other sources already:

Interview with Autism Speaks Chief Science Officer on Vaccines

Dear Autism Speaks Volunteer Leaders,

I want to share with you that we will be posting an important interview with our Chief Science Officer Dr. Geri Dawson on our website at 12 noon EDT today. The interview will cover the organization’s research funding and position on vaccines and autism as well as address several questions that frequently come up with volunteers, supporters, media and the general public. While there is no new information being provided, we are taking this opportunity to clarify our position on this topic while also providing information that will hopefully help families make the right decisions about their children’s health.

The interview is found at the following link: www.autismspeaks.org/vaccine_interview

FALL SOCIAL SKILLS PROGRAM: Learning 2 Play, Inc. (L2P) teaches essential skills that are the foundation for lifelong learning, well-being, and social development (e.g., self-reliance, oral communication, and social skills). The program begins at the foundation of play skills, and progresses to conversational and interpersonal skills, as well as school social skills.

Children enter L2P with a diverse range of needs, experiences, and abilities. All individuals are assessed in order to establish program goals and then placed in small groups (3-6 children per group) according to their age and ability. Both individual and group goals are fostered. We are currently accepting children 3 - 12 years of age for our Fall Social Skills Session.

Our Fall Social Skills Program runs on Sundays, starting September 13 and runs for 14 weeks ending Dec 20, 2009. For information on our program please contact Dana at 647 436 - 5651 or visit our website at www.learning2play.ca

From the Toronto Star, an article about Camp A-OK:

Adults, kids find camp life here is A-OK
TheStar.com - Fresh Air Fund -

Adults, kids find camp life here is A-OK
FRESH AIR FUND
TARGET: $580,000

TO DATE: $570,780

BY CHEQUE: Mail to Toronto Star Fresh Air Fund, One Yonge St., Toronto, ON, M5E 1E6.

BY CREDIT CARD: Visa or MasterCard, call 416-869-4847.

ONLINE: Use our secure form at: thestar.com/freshairfund.

The Star absorbs all administrative costs and does not authorize anyone to solicit on its behalf. Tax receipts will be issued in September.

If you have been touched by the Fresh Air Fund or have a story to tell, email lferenc@thestar.ca

July 30, 2009
Leslie Ferenc
Staff Reporter

Kids go to camp for all sorts of reasons - because their parents send them; to learn new skills; to make new friends and have fun or simply because they love it.

James Everest has added another to his long list.

“I like going to this camp because the staff find me a pleasure to work with,” he said. “They think I have a wicked sense of humour. And yes, I do.”

The 19-year-old dipped into his vast repertoire when asked to share one of his famous yuks. “I’m on a seafood diet,” he said smiling. “When I see food, I eat it.”

A natural when it comes to telling jokes Everest has been keeping his pals at A-OK Camp in stitches for years.

Established in 1987, the eight-week summer program offers children and youth with Autism Spectrum Disorders a chance to do what so many other kids do in the summer - hang out with their pals, make crafts to take home to their parents, go on outings and have a ball. Because of their high needs, the camper/counselor ratio is 2:1 or even 1:1.

This year, a program has been added for adults making the Autism Ontario York Region Chapter camp the largest of its kind in the province.

“We can now say we assist people from 4 to 104,” said Paul Kalmykow, the chapter’s co-ordinator of summer camp programs.

Without this special day camp and its trained staff and volunteers, many of these kids and adults would have no choice but spend their summers friendless and at home.

Learning is as big a part of camp as the fun and games. The youth program, run with the help of Kerry’s Place Autism Services, offers campers the opportunity to acquire important life skills on their road to greater independence including how to write a resume and prepare for an interview. They also get first hand experience working at job placements in the community. “I work at the Book on the Hill,” offered Everest.

Another favourite camp activity is swimming at the wave pool. “It’s a nice place,” he said adding the waves aren’t too big or strong. “It’s fun to be there.”

Thanks to the addition of the adult program, Eric Beedham had his first vacation in nine years, his mother Lynda said adding going to the pool with the camp was a big thrill for her 27-year-old son who was a former camper and Special Olympics swimmer. It’s something he hasn’t had a chance to do since moving into a local group home in 2001. “I will be speaking with camp staff to see what they can do in the group home to arrange visits to the pool,” she added.

Kalmykow’s son Ben, 19, will be back at camp in a few days. He’s looking forward to seeing everyone. “Making friends is something that’s hard to do for people with ASD,” Kalmykow explained. “They live in their own world but there’s social isolation too.

“At camp, they get involved with the community – on the buses, going to pre-vocational opportunities, going to the theatre and meeting other people.”

But it wouldn’t be possible without the help of the community, camp staff, volunteers and the generosity of donors including foundations, agencies and Star readers who support the Fresh Air Fund, Kalmykow said during a donor appreciation open house at camp located at St. Charles Garnier Catholic School. The program is one of 106 Fresh Air Fund camps. Money from Fresh Air is used to subsidize campers, many whose families are sole support parents, the working poor or newcomers who simply couldn’t afford to send their loved ones to camp.

With your gift, the Fresh Air Fund can help send 25,000 disadvantaged and special needs children to camp.

A fundraiser for National Service Dogs:

Please, please, please, help if you can. Looking for attendance, ticket sales, and/or door prizes. Any help would be greatly appreciated. Thanks again

RETRO DANCE

proceeds to National Service Dogs

WHY? The last litter born to Jo-Jo accumulated a

large amount of vet bills before they were 2 weeks old

Retro Dance

Saturday, August 29, 2009

8pm-1am

Wellesley Community Centre
1000 Maple Leaf Street

Wellesley ON N0B 2T0

Cash bar and light snack provided

DJ, Silent Auction, Door Prizes

Tickets $12/person or $20/couple

Contact: tamsterq@hotmail.com

From the Calgary Sun:

Birthday wish delights

Young boy thrilled with opportunity to drive C-Train

By RENATO GANDIA, SUN MEDIA

Last Updated: 29th July 2009, 4:23am

Jastein Barr turned five a week ago, but he hasn't stopped talking about his unforgettable birthday bash that got him driving an empty Calgary train for a few minutes.

The boy, who has autism, spent most of his birthday with Mike Magee, a C-Train driving instructor, on July 22.

His mom, Ann Barr, was at a loss for words to express her gratitude to Calgary Transit for making her son's birthday memorable.

"It almost made me cry that they would do this for our little boy and they didn't even know him," said Barr, who has four children, two of them with autism.

The day began for Jastein and his mom at the Anderson train station, where they were picked up by transit staff who drove them to the train garage.

The boy was outfitted with a yellow hard hat, covered in stickers with the boy's name on it.

Following a detailed tour of the garage, the little boy and his mom were led to a single train car with banners hanging on it announcing Jastein's fifth birthday.

Jastein was then allowed to push a button to open the train's door, was given the driver's seat and shown how to beep all the horns. He was also instructed not to push a big red emergency stop button.

"They let him drive the train and at every station they announced over the speaker 'This train is out of service, this is Jastein's train -- happy birthday, Jastein," Barr said.

He got to beep the horns, turn the windshield wipers on and off and eventually was switching on the intercom to tell everyone himself that it was Jastein's train, she said.

The boy's trip went from Anderson to the Stampede station.

Theresa Keddy, a spokeswoman for Calgary Transit, said a public request like this is not usually granted, but transit officials are happy to make an exception.

RENATO.GANDIA@SUNMEDIA.CA

Lindsay Moir writes another great article for those of us anxiously awaiting the start of school:

Ask Lindsay Moir:
One month to go.....!

Friday, July 31, 2009

Question:

This "question" is a composite of several email and phone inquiries I have received.

Our son starts school in one month! Last Spring, we had several meetings which identified that the actual transition to school would be VERY difficult for our autistic son, and the school board staff were all very "nice", reassuring us "that everything will be fine" and that they would be in touch to work out the details of this transition. The school is closed. The consultant is "out of the office' till September 1st, and we haven't heard from anybody... the Principal has an unlisted number. What should we do?

It takes our daughter 3-4 weeks to settle back into a learning routine after summer holidays due to her behavioural and intellectual exceptionalities. Even simple things like bed time routine have been relaxed during July. Are we "ogres" by taking up August ( vacation time) to begin to re-establish good "school habits"??

Our special needs son starts high school this September, after 10 years in a wonderful small rural elementary school-------------any suggestions of how to ease this "shock"? Our meetings last year sorted out the big issues of program, support and curriculum, but we are looking for suggestions to help with the "small" stuff!

Answer(s):

In many boards this is the "dead zone"--- some boards shut down the board office for two or three weeks around the beginning of August--- you literally can't reach anyone in administration.!!! Most board offices "power up" by mid-August. Board level consultants usually work the same schedule as teachers-- so don't look for them before the week before school starts. This year is VERY unusual, with many boards returning or having PD days BEFORE Labour Day weekend. Check your board website for your local calendar details. Principals and teachers usually spend most of the week before classes in the school building getting ready for returning students. Trustees are usually available if they are not on vacation.

If you want physical access to the school for short visits or to take pictures to use in pre-teaching your son, call Physical Plant (or Building Maintenance) at the board office and ask them to arrange access-- this is likely one part of the school board that has coverage all through the summer. In terms of education planning, contact the Superintendent and ask them to facilitate the necessary preliminary meetings BEFORE school starts. Principals are technically "on-call" during the summer, and most will call you in response to a Superintendent's request! Ask the Principal to set up chances for your son to meet the teacher, see the room, find the washroom and the right door during the week before classes start. In my opinion, your son should be a priority if the school has "staggered entry"-- he should be one of the first children to attend, NOT one of the last!! This means his transition should occur early, before school starts. Try to get the consultant to be there for the first day to give the teacher advice and support in managing your son. A "supported" teacher stays positive, so set up a meeting at the end of the first week to "nip problems in the bud".

You are NOT an Ogre!!!!! As an educator, I wish all parents would get their children back into a "learning routine" before school starts. Getting back into a good bedtime routine ensures that children arrive at school ready to learn. As a parent, I always encouraged activities that required my children to stay in a seat for a period of time, concentrate on a task, follow a sequence or schedule, in the week or so before school started. We did not "do school"-- but we did practice the habits that school requires. Teachers welcome back students that are ready to learn!!!!

There is no doubt that the first day of high school inspires fear in most "niners"!!! It is even more traumatic for exceptional pupils..... Here are a few tips to address common small issues that often arise for exceptional pupils:

get his combination (or other lock) ahead of time and locate his locker on a visit a few days ahead. It is demoralizing to struggle with a lock in a very public place--- make sure that this is solved in advance of the first day

If he is riding the big yellow bus, find him a "bus buddy"-- some one to sit with, to help him find the right bus AFTER school (there could be 50-60 buses sitting there). Ideally this is student who gets on before him or at the same stop.

Will he bring a lunch or buy one in the cafeteria? Does he know how to buy a lunch or things to supplement his brown-bagged lunch? Get him a lunch buddy from his old school to help him in this unfamiliar environment.

High Schools have "new rules"--- certain areas may "Out of Bounds" during classes, only certain grades can be in the cafeteria in certain periods etc. Make sure that your son learns these special rules.

Extra-curricular activities are an important part of high school. Make sure that your son in included in school teams, clubs etc-- these are amazing social opportunities and really add to the High School experience. Usually, students have to seek out these chances.... be pro-active for your son and involve him in more than just the classes. There are many ways for special needs to students to be included!!

School is less than a month away... what are YOU doing to get ready?

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

Nancy Morrison
Bradford, ON

Visit: Phil Morrison @ Sussex Home Improvement
(905) 252-8989
(416) 409-4399
www.youtube.com/sussex

IMPORTANT Autism News, Courtesy Nancy Morrison

2009-07-28T11:12:00.000-07:00

(Thank you Nancy!)
Alliance for Families with Autism

Visit

www.autismnewsarticles.blogspot.com

to read archived mail

Courtesy of Nancy, .

--- On Sun, 7/26/09, Nancy Morrison wrote:

From: Nancy Morrison
Subject: Many articles and important advocacy initiatives to get involved in shared .......7
To: "Nancy Morrison"
Received: Sunday, July 26, 2009, 9:23 AM

This from the UK advocacy campaign, what a great idea for all of us to get involved in......

The Autism File Campaign ... Get Involved!

Due to the huge impact the front cover of the forthcoming April issue is receiving, many mothers of children with autism have contacted us to say they want to get involved.

Mothers are already getting together in groups of 6 and emulating our campaign shot and YouTube clip in their own style. Mothers around the world of all different shapes, colour and size are demonstrating how autism mothers are strong and are 'Delivering Where Governments Have Failed'.

Striking the same pose with the same headlines makes mothers of autism a powerful force as we unite around the world. This is not about expensive cameras, photographers and make up artists; it's about us, the mothers showing our strength. So, grab a camera and 5 other mums and have some fun!

"The campaign is about strength, not weakness, it's about demanding support not hoping for it and it's about how we, the parents are having to deliver where our governments have failed", says Polly Tommey.

Please YouTube any clips and send us your photograph. We will feature these images on the website and in the July issue of The Autism File and at the Autism One Conference in May.
Above all, have fun and some time with friends!
Autism Mothers Unite, April 2009 Video - YouTube.com
Contact us at info@autismfile

A parent facing discharge from the IBI program, has produced a blog of her journey. Of particular interest is the letter from Minister Matthews regarding the decision to terminate the IBI funding for her son..... have a look under the Blog Archives for July 2009.

I just posted a letter from minister Mathews on my blog.
http://www.tooautis tic.com/

For those that heard in the media of this search, a success story to share...... the horror his parents must have gone through during those hours:

Police find Ajax boy TheStar.com - GTA - Police find Ajax boy
SUPPLIED PHOTO
Damon Mirans, 11, went missing from near his Ajax home just before 6 p.m. Wednesday, July 22, 2009.
July 22, 2009
Madeleine White
Staff Reporter

An 11-year-old Ajax boy has been found in Oshawa by police after being missing for several hours.

Damon Mirans, who has autism and cerebral palsy and does not speak, went for a ride on his BMX bike around his neighbourhood's block, near Ravenscroft Rd. and Delaney Dr., just before 6 p.m.

Officers had been searching the neighbourhood for several hours but did not find the boy until 10:45 p.m.

Autism Canada has forwarded the following info, and asked it be sent out to all other contacts in the autism community:

July 22, 2009
Dear

The Government of Canada is giving people a chance to voice their opinion on the rights of persons with disabilities. Please take the time to read the following information, and below you will find the instructions on how to access the survey.

Information from the Government of Canada

On behalf of the Government of Canada, I am pleased to invite you to participate in the online consultation on the ratification of the United Nations Convention on the Rights of Persons with Disabilities (Convention).

The Convention is of great importance to Canadians. Canada signed the Convention in March 2007, meaning that Canada is currently required to respect the general object and purpose of the treaty. The Government of Canada is seeking the views of Canadians, and particularly of the disability community, in order to inform the decision on ratification. These views would also play an important role in informing any measures that may be taken post-ratification at the federal level to further implement the Convention.

This online consultation is fully accessible:

* The content of the consultation Web site is available in the following alternate formats upon request: Large Print, Braille, Audio Cassette, Audio CD, e-Text Diskette, e-Text CD, and DAISY.

* The consultation Web site features a simple design to allow easy navigation.

Many resources are available on the consultation Web site to help you guide your feedback: instructions on how to fill out the consultation questionnaire, a Frequently Asked Questions section, links to useful resources such as the full text and a plain English guide to the Convention, background materials and much more.

Have your say! If you would like to participate in this online consultation, submit your views through the Web site or by email, regular mail, fax or phone. All contributions must be received by the Office for Disability Issues by July 31, 2009, midnight, Eastern Daylight Time.

Feel free to link the consultation Web site to your own Web site and to share the link with others who may have an interest in taking part in this consultation.

Consultation Web site: www.hrsdc.gc.ca/consultations

Please do not hesitate to contact us if you have any questions or require additional information on this consultation:

By email: consultation@hrsdc-rhdsc.gc.ca

By phone:

819-994-0335 (National Capital Region)

866-203-2426 (toll-free within Canada) If you are calling outside the toll-free area, you may leave a message with your name, reason of your call and best time to reach you during regular office hours and a representative will return your call.

1 800 O-Canada: 1-800-622-6232

TTY: 819-934-6649

By fax: 819-994-8634

By regular mail:

Stakeholder consultation
Office for Disability Issues
C/o Intergovernmental Relations
Human Resources and Skills Development Canada
Bell Building
105 Hôtel de Ville Street
Gatineau, Québec K1A 0J9

We look forward to receiving your feedback.

Sincerely,

Laura Oleson
Acting Director General
Office for Disability Issues
Human Resources and Skills Development Canada

How to Access the Survey

In order to complete the survey, please take the following steps:

1. Click here.
2. Click "Consultation on the ratification of the UN Convention on the Rights of Persons with Disabilities" under Current Consultations.
3. Click "consultation questionnaire" under About the Optional Protocol to the Convention. This can be found at the bottom of the page.
4. Either choose the online questionnaire, or download then upload completed questionnaire to access it without being online.

From the Toronto Star, one of the parents leading this lawsuit is the mother of a child with autism:

Two moms file lawsuit against city, union TheStar.com - GTA - Two moms file lawsuit against city, union

Mothers say strike is harmful to children
July 23, 2009
Laurie Monsebraaten
Social Justice Reporter

Toronto's municipal workers' strike is causing "irreparable harm" to children and youth who have been robbed of summer camps, child care, summer jobs and recreation, say two mothers who have launched legal action against the city and one of its two striking unions.

In their application to be heard by the Ontario Superior Court on July 31, the mothers, identified only as A.B. and E.F., say the loss of these programs violates the Canadian Charter of Rights and Freedoms.

And until this constitutional challenge can be properly argued, they are calling on the court to order the city and striking child- care and recreation staff to restore these services immediately.

The legal action, believed to be the first of its kind in a Canadian labour dispute, is challenging the constitutionality of Ontario's Labour Relations Act for not considering the interests of children during the strike, said lawyer Jeffery Wilson, who is representing the mothers and their children.

"The legislation is silent on children and there is no evidence that either side properly considered the impact of the strike on the interests or needs of children or families' ability to manage during the summer months," he said in an interview.

Neither the city nor the Canadian Union of Public Employees Local 79, which represents the city's recreation and child care staff, would comment directly on the legal action.

Of the 3,000 municipal daycare spaces affected by the strike, 88 per cent are subsidized. In its 2007 annual report, Toronto Parks, Forestry and Recreation said there were more than 86,000 registrations for summer and March Break camps at 243 locations (with many kids registered multiple times for different sessions.)

Single mother A.B. said her 10-year-old autistic son was eagerly awaiting the chance to participate in city tennis and drama camps this summer.

The loss of those affordable programs that offered one-on-one aid to her special needs child has been devastating, she said.

"I do not have the resources to fund his placement in a private camp or other such organization," she said in her affidavit.

Single mother E.F. said the strike means her children, aged 6 and 15, "are doing nothing" this summer.

"My 15-year-old son I.J. has lost the opportunity for participation in a youth program," she says in her affidavit. "This is leading him to engage in other less suitable activities, with a risk of inappropriate conduct."

At least eight mental health workers, psychiatrists, social workers and children's advocates have filed affidavits supporting the mothers' claim that the strike is causing serious harm to Toronto's kids.

Ruth daCosta, executive director of Covenant House shelter for homeless youth, said her vulnerable clients have lost important job opportunities and a chance to participate in healthy recreational activities because of the cancellation of city programs.

Child psychotherapist Frances Oliver said the current tough economic climate is making it even more difficult for families who rely on affordable city programs.

"The children feel that and it creates a lot of anxiety," she said.

"One senses the restlessness amongst youth without any structure or programs may be more impactful than the stink and toxicity of lingering garbage dumps," she added.

This next article is not about autism, but about the rights and needs of families of persons with disabilities, and speaks well to the questionairre above. My own editorial comment on this is why has the province left the cap for this funding at $60,000 when costs of living in the past 10 years has risen considerably. This ceilling should be adjusted each year as our cost of living dictates. Letters to your MPP's would help get this message across.....

This from the Toronto Sun:

Heartless: Province cuts family from program that helped them care for disabled daughter

By CHRISTINA BLIZZARD, TORONTO SUN

Last Updated: 23rd July 2009, 11:55am

John and Sandy Wood with their children Scott and Grace in their Peterborough home. (CHRISTINA BLIZZARD/Sun Media)
John and Sandy Wood with their children Scott and Grace in their Peterborough home. (CHRISTINA BLIZZARD/Sun Media)

PETERBOROUGH -- Sweet Grace Wood is one gutsy fighter.

Grace, 11, was born with DiGeorge syndrome, a rare chromosome disorder that results in congenital heart defects and other severe disabilities.

Grace's airways are so constricted, she breathes as if through a cocktail straw. An abnormality with her vocal cords means she speaks in a whisper. It's miraculous she can make any sound, doctors say. She's had three open-heart surgeries and a tracheotomy and spent the first four months of life in hospital.

All the same, the family refuses to treat her like a china doll. Grace attends regular school and takes part in most activities, although she has to use a wheelchair as she can't walk long distances.

Throughout her short life, doctors have told her parents they should give up on their daughter. Every time they say that, Grace beats the odds. Fights back. Proves them wrong.

These days, though, Grace isn't just fighting her daily battle for survival.

Her parents, John and Sandy, are battling government bureaucracy. They've been cut off from a $410-a-month provincial allowance for children with severe disabilities.

$60GS TOO MUCH

In a July 2 letter, an official from the children and youth services ministry told Grace's father that the family was no longer eligible for the Assistance for Children with Severe Disabilities program (ACSD) allowance, as its income now tops the $60,000 income cap.

"They are slowly squeezing people on the top out of the program," Wood said in an interview at his modest home this week. He points out that the income cap has been virtually unchanged in 12 years. Meanwhile, his income has slowly crept up with cost of living raises.

In a letter to Wood, Children's Minister Deb Matthews bragged that the government increased the benefit by $20 a month last year.

"It's no wonder, when families like ours are getting booted out of the program," Wood said. After all, if you're no longer eligible for the funds, you don't get the increase.

Grace's heart disease is so severe that her surgeon at Toronto's Hospital for Sick Children said he can do no more. That's why in 2003, the family took Grace to California for two life-saving surgeries. The first time they went, Grace was in such a fragile condition, she was unable to fly. They took the train.

While OHIP covered the cost of the surgeries, the family had to pick up travel expenses, accommodation and all their other expenses.

Now they're waiting for word on another valve-replacement operation Grace must have in Edmonton. Again, OHIP will pay for the surgery, but the family must foot all the other bills. It's too expensive for the whole family to travel, so only her father will accompany Grace. Sandy and brother Scott, 12, will stay behind.

"Thank goodness for Skype," Sandy said, referring to the free Internet phone service.

The community has opened its hearts to the family. Co-workers at PepsiCo have passed the hat. Scott's Grade 6 class held a fundraising dance and raised $100. Sandy volunteers at the lunch program at Grace's school, which donated its May proceeds to the family.

INCREASED SUPPORT

A spokesman for the children's ministry said the government has increased support to programs for children with disabilities.

"Essentially we put together a plan of care for the child based on their needs, and that will depend on the range of supports they need and their situation," said Kevin Spafford.

"ACSD is one of those that is really geared to low- and moderate-income families caring for children, but there is a range of other supports that are not income dependent that they would be eligible for, depending on their situation," he said.

So, since when did $60,000 become a high income?

This courageous little girl suffers more in one day than most people do in a lifetime. What a pity the government has let her down just when she needs the most help.

CHRISTINA.BLIZZARD@SUNMEDIA.CA

Another editorial from the Sun on this story:

Is this how McGuinty cares for kids?

By SUN MEDIA

Last Updated: 24th July 2009, 4:28am

Premier Dalton McGuinty talks a good game about how his government cares for Ontario's most vulnerable children.

But talk is cheap. Actions count. And when it comes to action, his government is often found wanting.

Consider the story of Grace Wood, 11, of Peterborough, reported by Queen's Park columnist Christina Blizzard this week.

Born with DiGeorge syndrome, a rare chromosone disorder resulting in congenital heart defects, severe respiratory illnesses and other disabilities, Grace nonetheless has one thing going for her outweighing all the others.

She has parents, John and Sandy, who surround her with love, give her as normal a life as possible and make enormous sacrifices to care for her at home, thus saving the state the far higher cost of institutional care.

How has the state responded? By cutting off a $410-a-month provincial allowance for children with severe disabilities the Woods had been using to help pay the electricity for an oxygen machine that helps keep Grace alive.

Why? Because the family's annual income recently edged over $60,000, even though this cut-off line doesn't factor in inflation and has remained virtually unchanged for 12 years.

Ontario Ombudsman Andre Marin, who has regularly gone to bat for Ontario's most vulnerable children, has described what is happening to families like the Woods perfectly. While not talking about Grace's particular case, he calls it "rule-itis."

"Rules, policies and guidelines exist for good reason," Marin has said. "But they are not foolproof and civil servants shouldn't always take the easy way out by mechanically and reflexively following them if their application leads to results which are palpably unfair or asinine.

"In far too many cases, we have seen compassion fatigue in the public service ... sometimes, you need to grow a heart."

But if bureaucrats lack heart, plus the judgment and initiative to address obvious injustices rather than just "following the rules," it's because the politicians they serve have failed to instill those values within them.

Which is why the buck stops with McGuinty, when appalling decisions like this are made by his government.

And in the Star, a family responds to this when they were faced with the problem with their child with autism:

`Where's Ontario's humanity?' mom asks TheStar.com - Ontario - `Where's Ontario's humanity?' mom asks
BILL SANDFORD FOR THE TORONTO STAR
Anne Larcade, shown with sons Emile, 13, left, and Alex, 19, once launched a lawsuit to help families get care for their severely disabled children.
Still no policy to ensure parents won't have to lose custody to get care for disabled kids
July 23, 2009
Tanya Talaga
Queen's Park Bureau

Single mother Anne Larcade eventually won long-term health care for her son Alex from the Ontario government after nearly losing custody of him to children's aid officials nine years ago because she could not afford to place him in a special group home.

Larcade was outraged after reading Monday's Star story on the plight of an Ottawa family faced with a similar problem – years after the province vowed to make sure parents would never have to give up custody rights to secure medical care.

"Where is Ontario's humanity?" Larcade said in an interview this week.

The Huntsville mother and a chorus of others are calling on the province to put an end to the situation once and for all by returning to the use of special needs agreements to ensure severely disabled children receive proper care and remain in the custody of their parents.

Matt and Ioulia Gallinger of Ottawa are trying to raise their severely disabled 11-month-old, Daria, at home, but fear they may not be able to in the long run because of a lack of provincial support for special-needs children. A brain injury during birth left Daria with severe cerebral palsy and developmental delays. She needs around-the-clock medical care.

The Gallingers say they've been told if they can't afford the bills, they can surrender custody of Daria to the children's aid society.

Larcade was the lead plaintiff in a $500 million class-action suit against the province that was dismissed in 2006 by the Ontario Court of Appeal. Larcade took the case to the Supreme Court of Canada, where it was also dismissed.

The Child and Family Services Act at one time allowed parents to enter special needs agreements with the government, under which they would retain custody of their children and still get specialized access to group homes and services.

The previous Conservative government put a moratorium on such agreements in 1999. Instead, ad hoc solutions and funding are scraped together by the government for individual families.

"There is no provision for care beside special needs agreements," Larcade said. "It is a grey wasteland for parents of frantic Internet research, doctors who don't know, services that are a fragmented map in disarray, and government people who say, `I don't know what to do.'"

Alex is now 19 and has lived in care for nine years under a special agreement, Larcade said. "He is autistic and mentally delayed, but yet is one of the most beautiful minds and human beings I have ever known. We would not have maintained custody save for the pressure on our story through the media which brought to bear a satisfactory, one-off, solution. The government said this would never happen to another family," she said.

Last month, Ontario Ombudsman André Marin revealed his office was contacted by 24 families, including the Gallingers, who feared they could be forced to relinquish custody because they can't afford their children's medical costs.

Four years ago, Marin found 150 families forced to surrender parental rights to children's aid societies to get around-the-clock medical care. The government stepped in, investigated each case and returned children to their families.

"The plight of children with special needs is a dark chapter in Ontario public policy," Marin told the Star this week. He has urged the government to reintroduce special needs agreements separate from child protection matters.

The Ministry of Children and Youth Services remains committed to solving each case individually, and is not considering a return to special needs agreements, said ministry spokesperson Kevin Spafford. "This is the route we've chosen," he said.

The Gallingers have been offered short-term assistance from the ministry and can have a home caregiver until February, at which time Daria will be 18 months old and ready for daycare, Ioulia Gallinger said. But to go to daycare, Daria needs a specially trained aide or nurse, and there are no commitments from the government past February, said Matt Gallinger, a United Church minister.

Special needs agreements were put in place to deal with these cases and "nothing has replaced it," said Mississauga lawyer Laughlin Campbell, who nine years ago helped attain long-term government funding for Luca Rosati, a then 2-year-old severely disabled boy with cerebral palsy whose story was featured in the Star.

From Parent Central:

Logo
ADRIEN VECZAN/TORONTO STAR

Grandmother Marie Fletcher balances Braiden-Makai Bell, 3, left, and Noah-Rylan Catt, 6, on her wheelchair, which she uses to cope with arthritis. Emilee-Cheyenne Catt, 9, tries to help with her brothers, who have autism.
Art camp a welcome respite for girl who grew up fast

July 25, 2009
Diane Flacks

Special to the Star

Nine-year-old Emilee-Cheyenne Catt watches her little brother Braiden catch his reflection in the window of their oven door. Braiden screams in delight, which causes Emilee to collapse in giggles.

"Do you like being a big sister?" I ask.

"Not very much," she responds.

Emilee's version of being a big sister involves helping to care for her two younger brothers, who Noah, 6, and Braiden, 3. Both have autism.

Emilee's mother, Frieda Bell, died two years ago, succumbing to a fast-moving necrotizing fasciitis infection that centred in her lungs. She died in her sleep, while her mother Marie Fletcher, 59, slept beside her and Emilee slept on the floor by their bed.

The day I meet Emilee would have been Frieda's 30th birthday and Emilee is wearing a pink "I love (heart) mom" T-shirt. She searches for a Cabbage Patch doll that is one of the few remaining gifts her mother gave her but is too overcome by tears to play with it.

Then Fletcher, who is raising the three children on her disability pension, reminds her that the doll's hair turns blue when you touch it. Emilee shows me. It is pretty cool.

Emilee plunks down beside me on the couch in Fletcher's small Toronto apartment.

"I can get Braiden to look at me," she says proudly.

"I sing `Row, Row, Row Your Boat.' I say it in a weird way, then I tickle him and then he jumps and gives me a hug."

The brothers, whose full names are Noah-Rylan Catt and Braiden-Makai Bell, are each a challenge in his own way. Sounding older than her years, Emilee explains that although Noah's autism is not as severe as Braiden's, Noah is a high-risk runner. When he's overwhelmed, he darts. And he's big and fast.

"He ran away at a birthday party yesterday," she says, giggling nervously. "He almost ended up in the Humber River!"

Between coping with her grief, helping her brothers and dealing with bullies who may pick on them at school or in the neighbourhood, Emilee has few places where she can be a kid. And now one of them, a bright spot in her life, has been cut back.

Horizons Arts camp, which she attended last year for the first time, is in session for only three weeks this summer instead of its usual six.

Horizon targets underserved neighbourhoods and, through funds contributed by private donors, is able to offer subsidies. Most campers pay $150 for the three weeks.

The program, held at Portage Trail Community Junior School, in the area of Jane St. and Weston Rd., focuses on arts and outdoor activities, providing a warm, inclusive and empathetic place for kids to be. The goal is to make camp a haven for each child, explains Horizons founder Lisa Phillips.

The councillors are specifically oriented to offer attention, affirmation and pure kid-time to campers. They go out of their way to respond to the campers' unique needs, Phillips says.

Phillips, too, goes out of her way.

Last year, just getting to the camp bus stop proved almost impossible for Emilee. Fletcher has arthritis in her hands and spine, so she used her electric wheelchair to ferry the children. The boys were strapped in, to ensure they didn't dart off into the street.

In the first week, Emilee was often late. That's when Phillips arranged for a separate bus stop for the family. They called it "Emilee's stop."

"They made it possible for her to go," Fletcher says simply. "If it would have rained, how would I have taken them all on my chair?

"The camp cares about every child and their history. Nobody has a camp go out of their way like Horizons did."

Emilee says the best thing about camp is the absence of fights.

"Don't be worried if kids make fun of you – councillors are there. They won't let you get hurt or anything. Because, before, some kids were actually nervous to go."

Phillips says Emilee arrived at camp last summer withdrawn and bereft. By the end of the then-six-week program, she was presented with a Miss Einstein award for always asking questions and a Miss Artiste award for her drawings. She gained confidence and won the love and respect of her peers and the adults.

"When Emilee left, everyone was crying," Phillips smiles.

"Even the older kids!' exclaims Emilee.

"I've never seen a man cry," adds Fletcher, hugging Emilee, "but her councillor, Blue, was crying on the last day of camp."

With all the complexity of caring for the boys, Fletcher knows how desperately her granddaughter needs one-on-one time. That's why Horizons is so important.

"And this is just one family," Fletcher says. "There are so many others, with stories worse than ours."

During my visit, Emiliee peers at my laptop. "Why are you making so many spelling mistakes?" she asks.

"I can't type as fast as you talk, so I misspell," I explain. "But I can understand it."

Emilee nods. She, too, creates stories – by drawing pictures and asking her brothers to put them together, to make sense of them.

In another way, Noah is making sense of things.

"He asked me out of the blue two days ago, `Where's Mommy?'" Fletcher says. "I told him she was in heaven. He ran up to the ninth floor to try and find our old apartment. It was the first time he said anything about it. I was shocked."

Emilee leans into the breeze from a small rotating fan that sits precariously on the edge of the couch. Her long dark hair blowing across her face, she asks Fletcher to stop talking about her brothers.

"I don't want them to have autism," she says.

But it's clear what she really doesn't want us talking about is her mom.

Her grandmother moves to comfort her but, suddenly, has to break off the embrace to intercept Braiden, who has taken off his dirty diaper. It's the second time this has happened since I arrived.

Fletcher is a fierce advocate for all of her grandkids. She has managed to get Noah in to a psychiatric counselling program at the Hospital for Sick Children and Braiden is coming to the top of a waiting list for intense intervention with his autism.

Meanwhile, the family needs to get through the long and busy days of summer.

To inquire or to donate to Horizons Arts Camp, please go to horizonartscamp.org.

Diane Flacks is a writer/actor/author

living in Toronto. dianeflacks.com

From the Montreal Gazette:

A place for kids to learn to be kids

By Sarah Jackson, Special to Surrey NowJuly 24, 2009

Every weekday morning, a parade of preschoolers exit Harmony House and walk two blocks to White Rock's Crescent Beach. With several autistic children and about 10 others in the program's care, that's an impressive feat.

The Harmony House Centre for Autism Research and Education Society is unique because of its integrated classroom. It opened nearly three years ago as an educational facility that teaches children how to build strong relationships with all types of people.

The staff members, one for every three children, are all trained in applied behavioural analysis. Harmony House readily welcomes kids with developmental disabilities, but its main goal is to help all children strengthen their social skills.

Executive director Bohdanna Popowycz Kvam says kids in other early-education programs "know how to read and write, but they don't know how to make friends and that's super important to us."

She says Harmony House programs help children who are less capable in social settings after they move on to elementary school.

The staff members stress lessons about standing up for yourself, entering social situations, conquering shyness and fighting worries.

In addition to the parent-participatory preschool, Harmony House offers after-care programs and several types of behavioural training for parents.

Tracy Schjelderup loves that Harmony House encourage social situations. Her daughter Jordan has attended the preschool since it opened in 2007.

"She's a beautiful child and you don't really see the yelling, but it happens," Schjelderup says.

"They just know how to handle her."
© Copyright (c) Lower Mainland Publishing

From the Kington Whig (and I included one of the three posted editorial responses following the aritcle, it was too good not to share)

Guide dogs to protect autistic kids
ASSISTANCE
Posted By EMILY DAVIES
Posted 2 days ago

Families with an autistic child will soon have a new tool to assist them with the announcement of the Lions Foundation of Canada's new Autism Assistance Dog Guide Program.

The organization plans to have 20 golden and Labrador retrievers trained by July, 2010, with 10 graduating by January, according to trainer Chris Fowler, who co-founded the first autism service dog program with his wife in 1996.

"The growth in autism is phenomenal," he said. "When we started the program ... the number of kids diagnosed with autism was one in 10,000 and now it's one in 165.

"I just felt that this was a great need to provide more services to families with children with autism."

Fowler, who carries a developmental service worker diploma, said the dogs are designed to act as a security blanket for children with autism.

"The dogs are tethered to the child and they take commands from the child's parents," he said. "If a child with autism is crossing the street without looking, the child's parents can command the dog to stop.

"Parents with a child with Autism have to hold onto their child's hand or their child will dart. With the dogs, the child has someone with them all the time. The dogs give the child some independence from their parents."

Fowler said the dogs are also meant to provide the children, aged four to 12, with comfort and security in social situations.

"They often have a hard tie transitioning from one place to another, like from the house to a restaurant," he said. "The dog is a constant. They do provide a calming effect and they can increase socialization."

Fowler, who has lent his expertise all over the world helping other dog-training schools learn to train autism assistance dogs, said he will choose the families to participate in the program.

Sandy Turner, executive director of the Lions Foundation of Canada Dog Guides, said the autism assistance dogs are the newest of a variety of canine assistance programs the organization supports, including vision, hearing, special skills and seizure response dog guides.

"There's been a huge world wide showing that the dogs can aid (autistic) people," she said.

Turney said her organization trains a total of 125 dogs a year for all of its services and the foundation doesn't charge its clients for any of them.

"All the dogs are provided at no cost to the client, so we need to fundraise for them."

Since its inception in 1983, the Lions Foundation of Canada has helped more than 1,500 men, women and children through the use of their dog guides.

For information on the Lions Foundation's dog-guide program go to www.dogguides.com.

Editorial comment from PatL:

This is wonderful news. Finally some good news for Families with children with Autism. Thank you from the bottom of my heart!!!! If only the government would show such compassion towards our children, instead of cutting them off their much needed programs. The number of children being diagnosed with Autism is increasing at an alarming rate. Instead of supporting our children, the government is finding ways to cut off our childrens supports. Truly very sad. Maybe the Lions Club could show them how to run the programs!!!!

From the York Region papers:

Richmond Hill autism camp to honour donors

Published on Jul 23, 2009

A special open house will take place in Richmond Hill next week for a summer camp for special children.

In 1987, York Region parents wanted a quality summer camp experience for children with autism.

“The programs were not suitable for their children or they simply did not have enough staff to meet their child’s special needs,” said Autism Ontario York Region chapter co-ordinator of camp programs Paul Kalmykow. “So they started their own for two weeks on the site where Canada’s Wonderland now stands. It was a great success.”

It still is, 22 years later. Now an eight-week summer program, it encompasses Autism Ontario Kids Camp, Autism Ontario Adult Summer Program, and, in co-operation with Kerry’s Place Autism Services, Youth Camp for adolescents with high-functioning autism and Asperger’s Syndrome.

Together, these programs form the largest day camp program in the province dedicated to children, youth and adults with Autism Spectrum Disorder.

The camps employ 38 staff assisted by high school volunteers welcoming almost 80 campers attending at least one week of camp.

“Because of the complexity in meeting the needs of our campers, we have very high standards for staff hiring and compensation,” Mr. Kalmykow said. “We intensively train our staff and have unprecedented support ratios of one staff to one or two campers. We’re also committed to getting our campers out into the community as often as possible, as this is something families often find difficult to do.

“We go to major attractions (such as) Wild Water Kingdom and Canada’s Wonderland, swimming, restaurants, movies.”

The camp covers the cost of entrance fees and transportation.

As a result, the camp is expensive to run, Mr. Kalymkow added.

A core group of funding agencies and foundations assist in defraying costs.

In recognition of their support, this event will be held Tuesday at 10 a.m. at St. Charles Garnier School on Castlerock Drive.

The Ontario Trillium Foundation, the Town of Richmond Hill Tastes of the Hill Committee, the Ontario Ministry of Children and Youth Services, The HRSDC Summer Jobs Program, the Autism Ontario Possibilities Fund and the Toronto Star Fresh Air Fund are to be recognized.

Many of the campers come from single-parent and newly arrived Canadian families and those who can’t afford other camps or need government funding, Mr. Kalmykow said.

“Fortunately, we have a solid core of funding agencies and foundations that believe in and support our programs,” Mr. Kalmykow said.

“They have given us so much over the years.”

For further informatiom, call 905-780-9587 or e-mail aokcamp@gmail.com.

Article in Today's Parent magazine. My 10 year old has been asking me about his autism, we just explain his autism is why some things are a bit harder for him to learn and why he gets some extra help at home and school. This is an interesting article printed:

Out of the Closet

julie-and-mac-ii

As some of you know, my oldest kid has autism. We take this autism stuff pretty seriously and as a result he has made remarkable gains. Indeed, to the untrained eye he is indistinguishable from his neuro-typical peers.

Last weekend four of the kiddos did a triathlon. When “Number One Son” finished the running component too early, it was obvious he got confused somewhere along the way. Turns out he went around the wrong pylon cutting the run short.

That evening my 8-year-old daughter came into my office to have a chat about her brother:

Kid: “Why did he get confused in the run today?”
Me: “Well, there were no marshalls directing the kids so he went around the first pylon and came back.”
Kid: “What is his ‘diagnostics’? I heard talking about it at a meeting once.”
Me: “Was it the Autism Ontario meeting?”
Kid: “Yes”
Me: “Well, uh, autism. But he has worked pretty hard and kind of outgrown it.”
Kid: “Like I outgrew my milk allergy?”
Me: “Yes, kind of.”
Kid: “Does he still have autism?”
Me: “Do you think he does?”
Kid: “I think he still has it a little bit.”
Me: “Yeah, I think you’re right. Listen, I have not talked to him about it yet so you need to keep this private until I speak to him about autism.”
Kid: “no problem.”
Me: “Thanks for being such a cool kid.”
Kid: “you’re welcome. Can I have a cheese stick?”

Although I was shocked that the conversation happened, it’s actually kind of weird that it took so long to come up. I mean, we have an autism logo on our car, we do Cycle for Autism, hang out with people whose kids have autism, and participate in all kinds of activities within the autism community. Didn’t they ever wonder?

I got to wondering about their lack of wondering – do all the siblings and cousins know about his autism on some level but just not question it? Maybe it’s a kiddo case of “it is what it is”.

My mother often reminds us of the time she sat us down as children to discuss her sister, who has a mental disability. Mom first asked us if we knew anyone with a mental disability. We rhymed off the names of kids at school, a neighbour and other random people who did not actually have a mentally disability. The one name we didn’t say was that of our aunt, and this was an aunt we were close to and saw regularly. My mom always says that to us, our aunt was just herself – no title, label or explanation necessary.

I’ve been dreading the day when I have to “out” my son to himself. I’ve played the conversation in my head a thousand times. This incident got me thinking that maybe all this worry is for nothing - maybe he is just like his siblings and cousins and already knows and accepts his autism.

I am sharing info about the Toronto AO Cycle, so many of our listmates are from the GTA:

Celebrating Our Event’s 10th Anniversary

Supporting families living with

Autism Spectrum Disorders in Toronto

Ride, Glide N’ Stride for Autism

Sunday, September 13, 2009

THISTLETOWN REGIONAL CENTRE
51 Panorama Court, Toronto (north/east of Finch and Kipling)

Special Guest Speaker:

YTV’s “CRUNCH” Host: Andrew Chapman

CRUNCH is YTV’s Saturday morning, hosted cartoon block, airing the

best in animated programming from 7 a.m. to 12 noon. CRUNCH invites

kids to “Take Back Saturday Morning” and liberate them from their regular week of homework, chores, appointments and serious parent negotiations.

With his playful style, host Andy gets kids to just laugh and be a kid while enjoying their Saturday morning cartoons. Kids can unite in the name of

fun 24-7 on the web, through CRUNCH message boards, blogs and more.

Long Live CRUNCH!

Registration: 9:00 am

Route Kick Off: 10:00 am

Participants get their photo taken prior to route kick off

Enjoy a free BBQ

New this year – Our 1st ever Awards Ceremony in honour of you!

Date to follow*

For more information about becoming a Sponsor, Volunteer or to Register contact:

Autism Ontario - Toronto Chapter at: 416-489-0702 or

Visit: www.autismontario.com/toronto/cycle

Charitable Number: 11924

From the Winnipeg Sun:

Disabled boy hurt on bus

Lock gives way, tipping wheelchair

By PAUL TURENNE, SUN MEDIA

Last Updated: 23rd July 2009, 10:27am

Melissa Burling, with her eight year old son Alexander, is upset that Alexander was hurt on a city bus. (Brian Donogh, Sun Media)
Melissa Burling, with her eight year old son Alexander, is upset that Alexander was hurt on a city bus. (Brian Donogh, Sun Media)

A St. Vital boy was injured Tuesday when a wheelchair lock on a Winnipeg Transit bus let go, causing the boy to smash into a bus seat, face first.

The boy's mother said it's not the first time the locking system has failed to properly restrain her son's wheelchair, and is upset Transit is not paying more heed to her calls to improve the locks in the wake of the incident.

Routine turn

"I'd like them to further their measures with those locks. Clearly there are issues with them," said Melissa Burling, whose eight-year-old son Alexander toppled over and hit his jaw on a bus seat after a lock gave way and tipped over his wheelchair.

Burling said she and Alexander were on a No. 51 bus leaving St. Vital Centre Tuesday with one tire of Alexander's wheelchair properly locked into a restraint on the bus.

But when the bus driver made a routine turn at normal speed, the lock gave way.

"The lock let go and the whole wheelchair tipped over and he screamed," Burling said of Alexander, who has cerebral palsy and autism. "He hit the other seat with his jaw. He hit the plastic part."

"The bus driver was really nice. It was no fault of his, it was the lock."

Burling complained to Transit, but was told an investigation could take weeks.

Keith Martin, operations manager for Transit, said the driver reported the incident and the mechanism was examined overnight. No problems were identified, but Martin did commit yesterday to looking further into the matter.

Martin said he's heard of the occasional incident but cannot remember a "claw clamp," as the devices are known, ever being proven faulty.

Martin said people sometimes fail to secure the wheelchair properly, but said he assumes Burling did everything right, and was therefore at a loss to fully explain what happened.

Clearly shaken

He said it's difficult to tell after the fact what went wrong if the device isn't obviously broken.

Burling took Alexander to the hospital where it was determined he'd suffered nothing more serious than a nasty knock. However, the boy, who is non-verbal, was clearly shaken by the incident.

"We were coming back from the hospital and he saw a bus and started crying," Burling said. "I can't get him on a bus any more. There's no way."

paul.turenne@sunmedia.ca

From canada.com, Burnaby BC

Workshop, curriculum focus on sexuality
Issues around sex 'very complicated' for adults with intellectual disabilities

Burnaby Now

Wednesday, July 22, 2009

The Burnaby-based Down Syndrome Research Foundation hopes to develop a sexuality workshop for people with intellectual disabilities.

The foundation's Joy Hayden said the organization wants to develop a curriculum that other groups across the country could use to help teach sex education to people with intellectual disabilities.

"It's something organizations and families have always struggled with: How do you approach the subject?" Hayden said.

"It's very, very complicated. That's what we've learned - very complicated."

The curriculum would be based on a recent 12-week program the foundation ran with 10 adults with intellectual disabilities, mostly Down syndrome and autism.

The participants led the direction of the discussions, and the workshop used "some pretty graphic pictures" to spur talk about sexuality, body parts and relationships.

Afterwards, the participants were more able to accurately name body parts, they demonstrated improved knowledge of different types of birth control and how they are used, and they had a better understanding of intimacy and sexuality.

Hayden said young people with intellectual disabilities don't always get sex education in the public school system.

And, if they do, she noted, it's not tailored to their cognitive level and learning style.

"Even though they're adults, mentally many of them are at a young age," Hayden said.

There is also hesitance to give sex information to people with disabilities, and in some ways, society doesn't recognize them as sexual beings, she added.

The foundation plans to run two more trial workshops and then create a curriculum that other groups can use.

jmoreau@burnabynow.com
© Burnaby Now 2009

I am sharing this American article, it makes some very wise statements about the strategies being put in place in the US, and why. Things for advocates to remember when speaking with our elected officials.... it would be wonderful if our government were so forward thinking....

"Tidal Wave" of Autism About to Flood Cash-Strapped California

By David Kirby on huffingtonpost.com.

Broke California will begin the new decade with crushing debt and wholesale elimination of human services. Meanwhile, President Obama has rankled Congressional Democrats with plans to earmark millions of dollars in NIH funds to find the causes and cures of autism.
Are these two things related? You bet they are.
Barack Obama is not a stupid man. He sees the budgetary train wreck hurtling down the track towards the US Treasury. His Administration knows that the number of adults with autism in this country is about to explode. Parents can't foot the bill, so taxpayers will have to. The price tag will be stratospherical.
Isn't it better to earmark millions in autism research funds right now for NIH to identify the causes of autism - despite outcries from Rep. Obey, Sen. Harkin and others - in order to save hundreds of billions further down the road? It's called frontloading the budget, and if we don't do it, the coming army of young adults with autism will march in and break the bank.
Anyone who thinks that a lot of people with autism somehow "grow out of their disorder" by adulthood should take a look at an important article published today in the Sacramento Bee.
Here, you will meet California residents such as Marlon Barton, a 6'2", 283-pound "strapping young man who flaps his hands and makes odd noises," according to reporter Cynthia Hubert. "No one knows quite what to do with him," she says.
Marlon Barton is 26 years old and "acutely" autistic. He scares people. My heart goes out to him, and to his amazing mother.
But they are hardly alone.
"As a tidal wave of these youngsters moves toward adulthood with complex behavioral and medical problems, society is largely unprepared," Hubert writes. "The futures of hundreds of thousands of autistic people in America cannot be ignored for long."
Dr. Robert Hendren, director of the UC Davis M.I.N.D. Institute, concurs. "We don't have the programs. We don't have the research," he warns. "We have this very large adult population of autistics coming along, and we don't know how to deal with them. We just haven't come to terms with it."
California has certainly not come to terms with it - and I have no idea what will happen to the thousands of young people in need who will be showing up at state offices in the next few years, their parents desperately seeking services.
Currently, 81.7% of all autism cases in the state Department of Development Services system are under 18, but that ratio is about to change fast.
There are now 6,300 adult Californians receiving autism services through DDS. But over the next four years, more than 4,000 teenagers will join their ranks. By 2018, the total number of adults with autism will more than triple, to 19,000 people -- each requiring tens of thousands of dollars (or more) in care, education and support services, every year.
California cannot afford it.

Autism BIG TENT MEETING and news

2009-07-27T11:36:00.000-07:00

FOR ALL ONTARIO AUTISM ADVOCATES, THE MORE THAT ATTEND THIS MEETING THE MORE PRODUCTIVE IT WILL BE FOR EVERYONE. PLEASE DO NOT BE SHY IN ATTENDING THIS MEETING. THIS IS A JOINT EFFORT, IT IS NOT SPECIFICALLY FOR ANY ONE ORGANIZATION TO OVERSHADOW OTHERS, IT IS FOR ALL OF US TO ENSURE WE ARE THE STRONGEST WE CAN POSSIBLY BE IN OUR ADVOCACY.

THE FOLLOWING HAS BEEN WRITTEN AS YOUR PERSONAL INVITE BY BRUCE AND LAURA MCINTOSH. A PRE MEETING SURVEY IS CURRENTLY BEING DEVELOPED, AS A JOINT EFFORT FROM MANY ADVOCATES AND ADVOCACY ORGANIZATIONS, AND WILL BE AVAILABLE SHORTLY.

Autism advocates have been speaking out for a long time now. We’re not referring merely to the issues surrounding the IBI program. We’ve been battling for services in schools, public awareness, services for adults, respite for families, and so much more. And we have made significant progress.

Ten years ago, very few members of the public knew what autism was. Today, there is much more awareness—not only about what autism is, but also about the struggles families face in trying to access services for their child. Some members of the public even seem to be aware that children with autism grow into teens and adults with autism, and that perhaps we should think about how as a society we’re going to deal with that.

Five years ago, there was an age six cutoff for IBI. The pioneering work of the Deskin-Wynberg families in the court of law, combined with many of us fighting in the “court of public opinion,” managed to end that injustice. Today, new legal cases like the Sagharian class action and the Ceretti case are laying the groundwork for a new wave of legal activism.

Three years ago, the then Minister of Education, Sandra Pupatello, said that ABA could not be done in schools. Now, we have PPM 140, and while it’s hardly a magic bullet, it is a step in the right direction.

In more than six years of working as autism advocates, we’ve learned and re-learned, a variety of lessons. The most important one is that we are stronger when we stand together. While we may not agree on every goal or every point, but when we do, we can make progress.

We’ve been looking ahead for some time, trying to figure out what needs to happen next to improve the outlook for individuals with autism in Ontario. The benchmarks process, ever-growing waitlists, the schools crisis and funding issue all call out for action. But the tactics that we have used in the past have worn out. While many in government take this as a sign that the war of attrition is being won, they’re wrong. There’s plenty of fight left among the “veteran” autism advocates, and there is also a new generation who are just itching to get into the fight for the first time.

It’s high time we all got together for a big pow-wow. We need to get our act together.

We need to decide what goals are important to all of us. That’s to counter the line that we keep hearing about how we’re not all asking for the same thing.

Then we need to discuss how we will pursue those goals and what tactics are we prepared to use in order to achieve them—whether as individuals or as organizations, whether as “good cop” or “bad cop.”

We need to co-ordinate our efforts. We don’t need to merge all our different organizations into one—that’s not our objective here at all—but if we could find a way to approach the government from all sides pushing for the same key goals, we might just be successful.

To that end, we want to invite you to a meeting. One day—Saturday, August 8th, 2009—with some of the most experienced, energetic and outspoken autism advocates in Ontario. All you need to bring is an open mind and your ideas. Together, we’ll lay out a road map for the next wave of autism advocacy in Ontario.

I sincerely hope that you can join us on August 8th. Details about location will be available soon. If you are unable to attend, we’d still very much appreciate it if you could complete our survey, which will be posted on our website shortly. (www.ontarioautismcoalition.com)

Sincerely,

Bruce and Laura McIntosh

Time Magazine:

Monday, May. 25, 2009
Growing Old with Autism
By Karl Taro Greenfeld

Noah, my younger brother, does not talk. Nor can he dress himself, prepare a meal for himself or wipe himself. He is a 42-year-old man, balding, gaunt, angry and, literally, crazy. And having spent 15 years at the Fairview Developmental Center in Costa Mesa, Calif., a state facility, Noah has picked up the con's trick of lashing out before anyone could take a shot at him.

Noah's autism has been marked by "three identified high priority maladaptive behaviors that interfere with his adaptive programming. These include banging his head against solid surfaces, pinching himself and grabbing others," according to his 2004 California Department of Developmental Services individual program plan (IPP). Remarkably, that clinical language actually portrays Noah more favorably than the impression one would get from a face-to-face meeting. (See six tips for traveling with an autistic child.)

Despite the successful marketing of the affliction by activists and interest groups, autism is not a childhood condition. It is nondegenerative and nonterminal: the boys and girls grow up. For all the interventions and therapies and the restrictive diets and innovative treatments, the majority of very low-functioning autistics like Noah will require intensive support throughout their lives. If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today's children is autistic. That means we are in for a vast number of adult autistics — most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society.

We are largely unprepared to deal with this crisis. Autism funding and research, so far, have predominantly focused on children. When I have visited autism conferences, there have been exceedingly few research projects devoted to low-functioning adult autistics. It remains difficult for families of adult autistics to find the programs they need, to access those services that are available and even to locate medical professionals and dentists who can handle adult autistics. Too much of the burden rests on the families themselves, who remain in the picture as caregivers, advocates and, too often, the only party with the autistic adult's best interests in mind.

Parents, of course, love their children. When I used to accompany my parents to visit Noah at Fairview, we would sometimes see other parents visiting their middle-aged "boys" — some of them strapped into helmets because of their self-injurious behavior — who walked with the same stiff-legged gait, bobbed their heads from side to side, twiddled rubber bands or twigs in their hands and sometimes smacked their foreheads with their fists. They were unlovely men, I thought, lost, impossible to like. But once the parents were gone, who was supposed to keep making these visits and these phone calls checking up on their sons and attending these meetings with the administrators and bureaucrats and caregivers to advocate on behalf of the lost men? That will end up being me, or people like me, the siblings. We will be the ones left caring.

My family served for the first 14 years of Noah's life as a sort of monument to my parents' love for their autistic son. We functioned as a Noah-support group. Almost as soon as I was aware of myself, there was Noah, a perpetual source of worry and concern because of his delayed development. He wasn't turning over, crawling, walking, doing anything on schedule except talking — and he soon regressed out of speech. My parents began then the lacerating pilgrimage from specialist to specialist, seeking, first, an explanation for this delayed development and then, finally, desperately, a cure, a therapy, hope.

In the late 1960s and early '70s, autism was considered a rarity in the U.S., so uncommon that many pediatricians believed they had never seen a case. Treatment was laughable: the dangerous Freudian inanities of Bruno Bettelheim and his now widely discredited methods, the talk therapy of the psychoanalytic community, whose members wanted to treat the parents rather than the child (the blame-the-parents approach). We moved from New York to Los Angeles in search of a cure for Noah. There, at UCLA, new behavioral programs, the operant-conditioning and discrete-trial therapies that now dominate autism treatment, were being pioneered by psychologists like O. Ivar Lovaas.

Noah was an early patient of Lovaas', yet the success that Lovaas would have with some of the autistic children he worked with eluded Noah, who remained among the lowest-functioning cohort — nonverbal, unable to dress himself, not toilet-trained until he was 5. Lovaas soon told my parents that he had gone as far as he could with Noah, that he was now focusing on younger children. (I have since heard of numerous children who also, as one parent I know put it, "flunked" Lovaas.) It was an early disappointment but only a precursor of so many to follow.

In the late '70s, my mother, frustrated at the lack of care and attention given to special-education children, who actually had fewer school hours and more days off than "normal" children did, opened her own day-care center for the developmentally disabled. By this time, Noah was 14 and as tall as my mother. My father, already in his 50s, was soon diagnosed with a heart problem; he has since had open-heart surgery. My mother, who had been Noah's most assiduous and faithful teacher, spending hours a day at a table in his room, constantly trying to get him to repeat sounds or tie a string, was exhausted. Both of them felt they couldn't take care of him at home anymore, that it had become a matter of their survival or Noah's. My parents reluctantly began looking for a place for Noah; a year later, they chose a group home in the San Fernando Valley. (See six tips for traveling with an autistic child.)

When we arrived, we were shown the room — four beds, three along one wall and the other in a corner, two windows with vinyl draperies — that Noah would share with three other boys. My parents signed some paperwork and showed the staff how to use the rice cooker they were donating so that Noah could still eat his favorite food. My mother had sewn labels into all his clothes and prepared a huge stack of gyoza dumplings for him. My parents were given additional forms to sign, including one that allowed the use of "aversives" — hits, slaps, spankings.

It wasn't forever, my father believed, as if he had packed his son off to a military academy for some discipline. But he knew, he already knew, that this felt wrong.

My mother was crying.

Noah bounced on a leather sofa, uninterested, and then reclined on his elbow. He didn't know this was forever; he didn't even know he wasn't coming home with us.

We left him sitting there. He waved to us, a weak, indifferent, limp-wristed gesture. Goodbye, like he didn't care.

Driving away felt like a crime.

That was the first of half a dozen residential placements for Noah. Some were better than others, but none of them was a place you would want to put your own child.

Fairview developmental center was Noah's last institutional stop. Built during the 1950s, Fairview is a complex of stucco bungalows spread over 100 acres (40 hectares) next to a golf course. Noah lived in Residence 14, one bungalow among about 50. In recent years, as the state has embraced a program known as Community Care, with the goal of moving developmentally disabled adults, including the severely autistic like Noah, from state facilities to local supported-living homes, these bungalows have been gradually shuttered. The money spent maintaining vast complexes like Fairview, the state believes, should instead be filtered through local agencies. Many of the higher-functioning developmentally disabled or autistic adults were never put into the state system to begin with, leaving the more difficult cases like Noah in facilities that increasingly rely on pharmaceuticals to treat any and all developmental and behavioral challenges.

Over the years, we noticed that each time we visited, Noah had a new scar, a black eye or a chipped tooth. In clinical parlance, these were Noah's "unobserved, self-inflicted injuries" — or USIs. One day, Noah had a dozen thick, black stitches on his forehead. As Noah's medications increased, so too did the number of USIs he suffered. Noah was already on Trileptal, Zyprexa and oral and injected Ativan. The collective side effects of these three drugs filled three pages of his IPP. I've looked and never been able to find a study of how they interact in "normal" individuals or the autistic. Because Noah had reached the maximum legal dosage for each of these medications, the Fairview staff urged another new medication, the antidepressant Remeron. (It is important to note that Noah suffers from no other physical illness, ailment or handicap. His problems are entirely neurological.)

But the drugs always seemed to make Noah worse, we pointed out.

They told us the choice was ours: either more drugs or a transfer to another ward in the facility where the most dangerous and criminally inclined autistic adults were housed.

My parents and I were desperate to find a well-run supported-living situation for Noah, but they're rare. When the state launched Community Care, numerous for-profit companies sprang up to house the developmentally disabled, each of whom is entitled to many thousands of dollars a year in state funding. The companies that have succeeded tend to work with higher-functioning autistic or developmentally disabled adults, those who pose little risk to themselves or others. Other companies are alleged to be providing inadequate care or even in some cases abusing clients. (See six tips for traveling with an autistic child.)

The risks of Community Care for families of the adult autistic or mentally challenged are numerous. Perhaps the greatest worry is that the state will cut the promised funding per client, leaving families to foot the bill. Institutions like Fairview, flawed though they sometimes are, are often necessary for care of the lowest-functioning or violently autistic. The seemingly benign term community care, when it is invoked by conservative state representatives in domed capitols, is too often a code word for budget-cutting. The concept of moving the autistic into loving group homes where they will be taught or looked after is Edenic but inadequate to society's needs. For the high-functioning, such assisted-living situations are a better alternative than institutionalization; for the low-functioning, the concept is often better than the reality. What happens if the supported-living home we find for Noah goes belly-up or loses its license or is just plain corrupt? Then where would Noah go? My parents simply can't care for him at home, nor could I.

And yet by 2005, my brother seemed almost in critical condition; we had no choice but to find yet another new place for Noah.

When I was writing my book about my brother, Boy Alone, I wished I had a story of hope and salvation. It is miracles that sell books. There seems to be an insatiable demand for narratives that end in triumph over an affliction: the cripple walks, the mute speaks, the autistic boy laughs and hugs and cries. We hunger for that uplifting journey, as opposed to the cruel odyssey I had to tell. What did I have to offer? My adult brother, still autistic, still nonverbal, still lost. As much as I hope that all the autistic boys and girls will get better, and as much as I can encourage their families to fight with all the hope they have, I also know that they will not all recover. The boy or girl will grow up, and there won't be a miracle; instead there will be an effort, something like what my family goes through every day, to figure out what to do.

We did, however, catch our own small break three years ago. Through the Westside Regional Center, my parents found out about Diverse Journeys, an assisted-living program willing to place Noah in a rented house in Los Angeles closer to my parents' home and therefore an easier commute for their weekly visits. Noah lives in a two-bedroom house with a roommate, a "normal" person, whose rent is partly subsidized in exchange for the attention she must pay to Noah when she is home. A rotating series of caregivers take Noah to the park or for walks or to fast-food restaurants during the day.

The program has made some real progress in weaning Noah from some of the medications he had been taking, cutting him down to two drugs from four. And the mysterious scars and bumps and bruises he was getting, what Fairview termed USIs, have largely ended. So far, Noah's assisted-living program represents a great improvement over Fairview, and my parents and I are thankful every day for this change in Noah's circumstances.

When Noah is happy, it is a stark, uncut ebullience, rising, as my father wrote in his first book about our family, A Child Called Noah, "from a deep, pure place." The joy emanates from him with such force that he will run toward me with his wide smile and rub his head against my shoulder in an almost feline gesture of pleasure. On days when Noah is in a good mood, when he is humming an up-tempo version of his melody of repeated, nonsensical syllables, we are again reminded that he is capable of great happiness.

Yet on some visits he is awful. He has good moods and bad moods. Just like me.

Is Noah happier in his new situation? Perhaps a little. He can never say.

Noah's condition persists, an immovable psychic object. As a family, we lived in the present, from crisis to crisis; my parents always mustering the energy for a response. My father is in his 80s now, my mother in her late 70s. They will go on as long as they can. Then I will try to step in.

Will I always be there for Noah, as my parents have been?

I wish I could say, Yes, definitely, I will be there.

But I honestly don't know.

Greenfeld is the author of Boy Alone: A Brother's Memoir (Harper), from which this article is adapted

See TIME's Pictures of the Week.

* Find this article at:
* http://www.time.com/time/magazine/article/0,9171,1898322,00.html

The Peterborough Examiner:

Did someone say, let the children suffer?
Posted 3 days ago

Ontario's Liberal government will spend $109 billion this year, and intentionally go $14 billion in the hole to try to stimulate a struggling economy.

John Wood and his family are hoping that same government will change its mind and return the $4,920 a year they have been getting to help cope with 11-year-old Grace Wood's severe, and expensive, health problems.

You read it right: $14,000,000,000 in the red for Ontario - nine zeroes - and $5,000 it will save by cutting off the Wood family - three zeroes.

The McGuinty government could argue that Grace Wood isn't actually losing anything. Her parents, John and Sandy, will do what any parent would. They will keep buying Grace the $150 masks she wears at night so she can breathe despite the effects of a rare genetic disorder that narrows her windpipe to the width of a straw.

John will soon fly with her to Edmonton for another bout of surgery, this time a recently developed procedure that will replace a valve in her leaky heart. The Woods have to pay for flights, his hotel bills, food and all the other costs that add up when you're travelling.

Friends, family, co-workers and people who read about the family's plight will no doubt help out. That's what happened six years ago when Grace, who was not expected to see her third birthday, was taken to California for two life-saving operations.

So yes, in one way the province can save its $4,920 a year and claim it is doing no harm to Grace and her family.

But of course there is harm. When a child is seriously ill a disproportionate amount of family resources go to dealing with that situation -money, but also time, energy and attention. It is done from love, but the price is still high.

The Woods lost their monthly $410 payment because John Wood's salary increased to more than, but barely more than, the $62,641 cutoff for a family of four. However, when they began receiving help the cutoff was $60,000. If it had been indexed to inflation, the cutoff would now be $76,000.

That particularly cruel irony isn't lost on the Woods. MPPs have their salaries indexed. Every spring they get an automatic raise, a protection they voted themselves in 2006 -along with a 25% raise.

More than 60 of the 71 Liberal MPPs now make more than $132,000 a year - indexed.

But, according to MPP Jeff Leal, the province might not be able to afford to give the Woods, and others in their situation, a little help.

"Heartless" is the mildest term to describe that attitude. When you're burning through $109 billion a year, there is no justification for taking a few thousand dollars from the families of suffering children.

Toronto Sun:

Province ignoring family's plight

Plenty of waste at eHealth, but no money for disabled child

By CHRISTINA BLIZZARD, SUN MEDIA

Last Updated: 26th July 2009, 3:40am

I don't know why, but any time a heartless bureaucracy faces off against a loving family, the faceless bureaucrats win.

Loving families end up heartbroken.

Case in point is the gut-wrenching story of little Grace Wood I told readers about on Wednesday.

Grace, 11, was born with DiGeorge syndrome, a rare chromosome disorder that causes severe heart and respiratory defects.

Grace has had three open heart surgeries, a tracheotomy and has a reconstructed airway. Her dad, John, is preparing to take her to Edmonton for life-saving surgery to replace a heart valve.

In a letter this month, the government told the family they were cut off from a $410 monthly allowance they were receiving, effective April 1.

They've been told they no longer qualify for the Assistance for Children with Severe Disabilities program (ACSD) because Wood now makes slightly more than the $60,000 income cap on the program.

What is so outrageous about the cap is that it doesn't acknowledge how much the family is spending on Grace's care, or the extent of her disabilities.

They've already paid out of their own pocket for two trips to California for heart surgery and will pay their own travel and accommodation costs to go to Edmonton. They can't afford for mom, Sandy and son Scott to go with them.

Wood points out the income cap hasn't been significantly increased for the past 12 years, while his income has slowly increased.

NOT ELIGIBLE

The response from the Ministry of Children and Youth Services is that the program is meant for low and moderate income people, so they are no longer eligible.

Well, give me a break. If $60,000 isn't a "moderate" income, I don't know what is.

In the Peterborough Examiner this week, Wood pointed out that over that same period, MPPs' salaries have skyrocketed.

He told reporter Elizabeth Bower that if the province can afford to give MPPs pay hikes -- especially the 25% raise in 2006 -- then it's "obscene" to say it can't afford to better help families with children who have disabilities.

"We don't cap them (MPPs)," Wood said. "But we tell a family of four to not make $2,600 more (over the last 12 years) or else we'll cut you off."

The sad part in all of this is that when the chips are down, you can't always count on government to be there for you.

The silver lining is that you find out what community is all about. You can count on friends, neighbours -- even the kindness of strangers who were touched by the courage and dignity of this little girl.

The school lunch program where Sandy volunteers donated their May proceeds to the family. And her brother Scott's Grade 6 class held a fundraising dance.

This week, a local trucker ripped my column from the newspaper and stuffed it in an envelope with a note saying he wants to help - and passed it along to Wood's father.

Another reader with a small engineering company contacted me with an offer of financial help with accommodation in Edmonton. He just thought Sandy should be at her daughter's side for the operation. He is shy about offering, just as Wood feels awkward about accepting.

The real point is the Wood family shouldn't have to rely on charity to care for a severely disabled child.

QUIETLY COPING

While they are truly grateful for all the help, that wasn't why they contacted me.

They have been quietly coping with Grace's severe disabilities for 11 years. They simply thought it was unreasonable for the government to pull the rug from under them.

Surely a program like this should be indexed to the cost of living. Or based on the severity of the child's disability.

This is the same government that squandered millions of dollars on high-priced consultants for eHealth. There's always money for tea and cookies for the high flyers.

And there's always money to hike MPPs' salaries.

Yet they're cutting off $410 a month in aid for a brave little girl with severe disabilities.

Surely a civilized society first helps the most fragile in its midst.

What has happened to our priorities?

This is shameful.

CHRISTINA.BLIZZARD@SUNMEDIA.CA 416-325-3971

An excellent Lindsay Moir column today:

Ask Lindsay Moir:
Entering High School

Friday, July 24, 2009

Question:

Our son will enter Grade 9 this Fall. He has autism and a mild developmental delay. He has always been integrated with accommodations and some limited modifications. He functions at about a Grade 5-6 level academically, and has many friends from his elementary years, he is "very social" and he has always been "included" in school activities.

We assumed that his high school placement would be a continuation of his elementary years and attended the Orientation Night in March. We were shocked to find that they had slotted him into a Special Class fulltime---- they presented this as a "done-deal" and expected us to be thrilled!!

We talked to his elementary principal and teachers who were also shocked! We all knew that he lagged behind, but we also knew that he had exceeded all our expectations (academically and socially) in his mainstreamed setting. He has never had more than a couple of hours per week of extra help from the Resource Teacher or an EA. His peers have been his main support system ( and most of them are going to the same high school).

In our first few meetings with the high school, we were TOLD to choose between:

full-time in the Life Skills class, OR

full-time in the Developmental Class

On your advice we agreed to visit both classes (never turn down program you have not observed). The Developmental Class was basically "Day Care and recreation" with no real educational goals--- our son is capable of ongoing academic progress, so this was clearly not a program to meet his needs. The Life Skills Program was academically several years behind his functioning level, but some of the content might be beneficial for our son. The school continued to push us to pick one or the other.

Finally we sent a letter stating that the appropriate program would look like this:

Core English Program in the Life Skills class

Integrated in a regular class for Math, Science, Health & Phys Ed with some accommodation and perhaps very limited modification

Ride the big yellow school bus with his brother, which he has done with no incidents for the past 9 years

Eat lunch in the Cafeteria with his brother and his elementary school buddies

The school seemed OK with this (nothing in writing). On the last day of school we received the IPRC Statement of Decision with the following "decision":

Full time in the Developmental Class

Lunch in the Developmental Class

Special Education van transportation

With no staff left at the school, we immediately contacted the Superintendent who did get back to us, with "Plan B":

Full-time in Life Skills OR Dev Ed class (our choice)

Lunch in that classroom with an EA

Spec Ed van and if "successful", consider big yellow bus after one semester

This is not satisfactory.

Our son has never seen himself as "different" and thanks to his elementary school he has been very successful in an integrated (inclusionary) setting. We are realistic that some accommodation and modification will be necessary, but why would we move backwards in areas that he has handled already??

Help! What do we do now??

Answer:

Immediately (and formally) appeal the PLACEMENT DECISION.

It is clear to me that the high school has been trying to FIT YOU SON into an existing program, rather than CREATING A PROGRAM to FIT YOUR SON. This is the fundamental issue. Ask the Superintendent to immediately convene an IPRC prior to the beginning of school. It is important to have the transportation and schedule finalized PRIOR TO THE START OF SCHOOL--- it is not acceptable to leave this till September!

(the following answer is based on information garnered from the parents by telephone, not from their original email)

Both the Developmental Ed Class and the Life Skills Program are organized in a "holistic" way--- there is no kind of schedule by subject or topic, and everything is "taught as it comes up". The classes follow themes ( although no-one in the Developmental Class could identify these "themes".)... This kind of "free-form" timetable makes it impossible for students to be integrated OUT of these classess or to be integrated IN, as you are requesting--- it is all or nothing!!! You can't be there for Core English because it might occur (or not occur) at any time!!! This is a 1970s model that is not very progressive!!!! Most special classes in Ontario have moved past this structure many years ago.

It is not realistic to think that these classes in your school will change their philosophy and structure for September-- maybe by September 2010???? Therefore you need to think of how his "modified" English program can be delivered in either an Academic or Applied setting or in a Resource Room-- make it your goal to have Core English in Life Skills at a future date--- you might be surprised how well it can be delivered in a regular class. His Grade 8 teachers can be used to setup a program similar to what they did this past year. Whether this is for credit, or not, is not the big issue!

For his "academic" subjects, place him in regular classes where he has peer-mentors from his old elementary school and schedule a Resource period each semester to give him individual help with these subjects.

Lunch and transportation are remnants of a "paternalistic" system based solely on your "handicap", rather than on your proven ability... Economically it makes sense to NOT have special transportation for a student with 9 successful years of riding the bus. Having him socialize with his peers and his brother at lunch, only frees up the EA to help needier students over the lunch hour-- this is so obviously out-of-date thinking, I can't believe it!!!!! everyone talks about "limited resources", but here we are assigning them based on which class the student is in..... RIDICULOUS!!

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

Nancy Morrison
Bradford, ON

Visit: Phil Morrison @ Sussex Home Improvement
(905) 252-8989
(416) 409-4399
www.youtube.com/sussex

Autism Articles Jan 1-10, 2009

2009-01-11T06:04:00.001-08:00

Autism News Articles
January 1st 2009 to January 10th 2009
A compilation from the last week from email groups, others mailers and google alerts

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

Thank you for your patience as I recovered from my major shoulder surgery in November. This is why you have not heard from AFA through this mailing.
Christmas with my three children with Autism was a real treasure-My non-verbal son said “Merry Christmas” (thought I would share)
Trish Kitching

From Sudbury Ontario, a FREE ABLLS workshop
Gatchell school council
Invitation to
Ablls curriculum workshop
And presentation on the alternative curriculum
at
Gatchell School
31 Tuddenham Avenue, Sudbury ON
OPEN to all parents of students on the autism spectrum at
rainbow district school board
Wednesday, January 28, 2008
630 pm - 800 pm
Gymnasium
Jana Duncan, Special Education Teacher will be our lead facilitator
Do you ever wonder where the goals come from in the Individual Education Plan (IEP)? Now is your chance to unravel the mystery and
get involved in the curriculum!
What is the ABLLS-R?
The Assessment of Basic Language and Learning Skills – Revised (ABLLS-R) is a device for assessing skills in children with language and learning deficits and is most commonly used in the process of developing a program for children on the autism spectrum.
What is the Alternative Curriculum?
Join us to find out!
Please Reply by January 21st
if you will require Childcare
Kindly RSVP to Iva McNair, Principal (by January 21st ) Telephone 674-1221
or email mcnairi@rainbowschools.ca or Jana Duncan duncanj@rainbowschools.ca
Directions from downtown Sudbury: Travel West on Lorne Street, turn right on Tuddenham Avenue- turn left at the stop sign at the top of the hill.
REMINDER
April 2nd is World Autism Day!!!!!!!!!!
Bringing some past to present to remind us how Autism is a gift.. thank you Carly..
Carly Fleischmann responds to W-FIVE doc

W-FIVE

Last weekend, W-FIVE aired a documentary on the life of Carly Fleischmann, a 13-year-old girl from Toronto with autism. She offered a rare glimpse into the secret world of autism and has become a symbol of hope for parents and families coping with an autistic child.

She is still unable to speak a single syllable. But two years ago, she defied the odds and started typing words with the help of specialized computer software.

After watching the W-FIVE report last weekend, she wrote this email to her father and her therapists.

Did you see the dad who walked to Ottawa

I want to walk to Ottawa

Because i don't want to be the girl known for spelling i want to help children like me

The priminister brain harper

But i can't take the train

I need to walk

It called making a statement

Duh

A thirteen yearold girl walks to Ottawa would make people want to meet with me

Not a thirteen year old who takes the train

I feel sorry for the boy who did not get people like you to work with him

I think i can help

But i need to walk

Maybe mommy will walk with me and then lots of people will then follow us down

I want to do it

Why don't you think they will let me

But why is it just them fighting for me

I can fight to

Im smart

Im going to ask mom if i can go

People will understand and join in my walk

I will go right to his house

I will sit on the snow and wait for him

I will tell him its time to help

What did dad say

Tell him i that i know but let me use my spelling and legs for something good ok

I can help

Im not a little girl any more

Thats what he said to me last night
http://groups.yahoo.com/group/autismsupportOttawa
Support Groups for Parents of Children with ASD: Predictors of Involvement
You are invited to participate in a study on support group use in parents of children with Autism Spectrum Disorders.

Researchers: Tess Clifford, MA (PhD Candidate), Patricia Minnes, PhD (Department of Psychology, Queen's University)

What do we want to learn? We want to learn about the experiences of parents of children with autism spectrum disorders (ASDs). We are especially interested in your experiences with parent support groups, and would like to learn how best to support all families of children with ASDs. If you are interested you will be invited to participate in an online parent support group.

How long will it take? There are 5 questionnaires that will take about 1 hour to complete, however, they can be completed at different times (over a one month period). Please be sure to complete ALL parts otherwise the data cannot be included in our study.

Who can participate? Parents or guardians of a child diagnosed with an ASD are invited to participate.

How can I participate? Click here to get more information about the study. Follow the directions on this page to register with ASD-CARC or login if you are already registered.

If you have any questions about this study, please contact Tess Clifford at 4tc29@queensu.ca.

Thank you for your interest!

Tess Clifford, M.A.
PhD Candidate
Clinical Psychology Program
Department of Psychology
Queen's University

--
Tess Clifford, M.A.
PhD Candidate
Clinical Psychology Program
Department of Psychology
Queen's University
4tc29@queensu.ca

From Autism Ontario
FYI:

Upcoming Education and Autism Spectrum Disorders Conference:
The registration deadline for the February 2009 Conference (Ottawa, Ontario): Educating Children with ASD: Theory to Practice, is fast approaching. A note of interest: Autism Ontario will be reimbursing families following their participation ($50.00/family maximum) who register for the conference on a first come first serve basis. Please see attached information and registration forms.

Autism Ontario – Ottawa, La société franco-ontarienne de l'autisme and the Autism Spectrum Program – Eastern Ontario extend an invitation to parents, professionals, educators and policy makers to attend the "Educating Children with Autism Spectrum Disorders: from Theory to Practice" conference February 18-20, 2009.

-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
Je vous fais parvenir l'invitation encore afin de signaler que la date limite pour l'inscription approche vite. Veuillez noter que ''Autism Ontario'' remboursera les familles ($50.00) qui s'inscrivent à la conférence sur une base de premier arrivé premier.
Autisme Ontario – chapitre d'Ottawa, La société franco-ontarienne de l'autisme et Le programme du spectre autistique de l'est de l'Ontario invitent les parents, les professionnels, les éducateurs et les décideurs à participer à la conférence « Éduquer les enfants présentant un trouble du spectre autistique : de la théorie à la pratique » du 18 au 20 février 2009.
Afin de nous aider à atteindre le plus grand nombre d'individuels on vous demande de bien vouloir transmettre cette invitation à vos collègues et familles dans l'espoir qu'ils seront en mesure d'y assister.
Si vous avez besoin de plus amples renseignements, n'hésitez pas à communiquer avec nous.
<> <> <> <> <> <>
Gabrielle Nadeau
Senior Administrative Assistant
Adjointe administrative principale
Autism Intervention Program - Eastern Ontario
Programme d'intervention en autisme de l'est de l'Ontario
1661, chemin Montreal Road
Ottawa, Ontario K1J 9B7
Tel/Tel: 613-745-5963 or/ou 1-877-542-2294
Fax/Telecopieur: 613-745-9237
e-mail/couriel: nadeau@cheo.on.ca

WITH ATTACHMENTS

FROM Nancy’s list

I have been offline for a few weeks, we have had many challenges in our home, and I also got hit hard by the flu bug and was bedridden for a few days this week. So here is a message with all the outstanding info from the past few weeks,

Happy New Year,

Nancy

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

A great opportunity for GTAers, a course being offered at George Brown College, free of charge, Behavioural Tools for Parents. See attached flyer, and this was also sent from a listmate:

We have arranged two 8 week courses (free of charge, courtesy of George Brown) for parents running weekly on Tuesday evenings. The first course started on Tuesday but there is still room for another several families.

If you could post it so that interested families could apply, I would appreciate it.

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

Just after sending out my last mailing, a listmate shared this with me..... very important info regarding the RDSP deadline:

BMO was the first to start RDSPs as of two days ago, with only 9 days to take advantage of the first year's grant and bond. This made no sense to me so I called BMO's RDSP 800 number (from my holiday!!) and found out that you have until March 2, 2009 to open the account and apply for grants that will apply to the 2008 tax year. This is similar to RRSP deadlines. I am not sure if this applies just to this year or all years but at least those individuals who worried about losing the benefit of the first year due to time constraints need not be concerned.

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

And this was also posted on the OACR's website:

Federal government extends RDSP submissions
Families have until March 3, 2009
Wednesday, January 07, 2009 -- Camille Jensen
Families now have more time to make a contribution and apply for the matching grant and income-tested bond for the 2008 Registered Disability Savings Plan (RDSP).
The extended deadline was announced at an event celebrating the national availability of RDSPs, which was introduced in the 2007 federal government budget.
“The government announced RDSPs in Budget 2007 to help parents and others set aside funds today to financially support a child with a severe disability when they are no longer able to provide support," said Minister of Finance Jim Flaherty in a statement.
"I am very pleased that this long-term financial support is now available and I congratulate the Bank of Montreal for being the first major bank to offer RDSPs.
"To ensure that as many individuals as possible can establish an account and be eligible for a full year of the Canada Disability Savings Grant and the Canada Disability Savings Bond, we are pleased to announce a two month extension to the 2008 deadline for opening an RDSP and applying for the 2008 Grant and Bond."
The 2008 contribution year has been extended to March 2, 2009 from the Dec. 31, 2008 deadline. The 2009 RDSP contribution year will begin March 3, 2009.
The RDSP is a tax-assisted savings plan. Contributions to an RDSP will not be deductible and will not be included in income when withdrawn. Investment income, grants and bonds are included in the income of the beneficiary when withdrawn from an RDSP.
Contributions under the new RDSP will be matched by Ottawa up to a maximum of $4,500 a year based on the family's net income. While the contributions are not tax free, the interest earned is not taxable.
Al Etmanski, president of the Planned Lifetime Advocacy Network (PLAN), an organization which advocated for the creation of RDSPs, congratulated the government for creating a vehicle that will assist families in planning for the long-term financial security of their relatives with disabilities.
"On behalf of families from coast to coast, the Planned Lifetime Advocacy Network would like to thank the Government of Canada for its leadership in implementing an RDSP, the first of its kind in the world," said Etmanski, president of PLAN.
"With my daughter, Liz, I have been eagerly awaiting this announcement. Aside from ensuring the financial well-being of our sons and daughters, the Government of Canada is sending a major signal to Canadians with disabilities and their families — ‘we know you have extra expenses; we know you want to participate and contribute to society; we trust you to decide how best to do this.’"
PLAN has launched a new website with information relating to the RDSP, including financial updates, provincial treatments, details and analysis, stories and the new RDSP Calculator.

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

Jonathan Howard has finished his cross Canada marathon in support of those affected by autism. He raised awarness and funds from Newfoundland through to British Columbia. I can think of no better way for our community to let Jonathan know how much we appreciate his efforts than particiapting in the CBC's Next Great Prime Minister Youth Election, and voting for Jonathan. Here is the link to his page on CBC, please take a moment to place a vote for Jonathan:

http://www.cbc.ca/nextprimeminister/candidates/jonathanhoward.html

Published in Langley BC:

Athlete Running the Dream

2008/12/19

Craig Spence

After running 8,000 kilometres and passing through 650 communities, Jonathan Howard brought his dream to James Kennedy Elementary School Dec. 15, raising funds and awareness for people with autism.
Jonathan Howard talks to students at James Kennedy Elementary School Dec. 15
After running 8,000 kilometres, passing through 650 communities and wearing out 15 pairs of shoes. Jonathan Howard brought his dream to James Kennedy Elementary School Dec. 15.
Mr. Howard, a resident of Mississauga Ontario, left St. John’s Newfoundland in March and has been running a marathon a day as a fund-raiser and awareness raiser for people with autism. He had just 115 kilometres and four days to go in a journey that would end Dec. 18 at Mile Zero of the Trans Canada Highway in Victoria BC.
“Someone told me once to dream as though you’ve never failed,” he told the students. “The most important thing to learn about yourself is to follow your dream.”
He thanked the school for inviting him to do his presentation. Wendy Durnan, who has a son with autism and who helped organize his school visits in the Lower Mainland, introduced Mr. Howard. Her daughter Kaelynn presented him with a CD produced by the family while siblings Christian, Brendan and Meaghan looked on.
Principal Robin Mott emphasized the importance of Mr. Howard’s achievement and his message. “The fact that we’ve had Jonathan Howard here today should really make a difference to you. Think about it: a marathon every day!”
As hard as it was for him to complete his cross-Canada trek, Mr. Howard said it’s even harder for those who live every day with autism. “It’s all about raising funds for autism,” he said. “There’s a lack of understanding about what it is.” His goal was to raise 10 cents for every Canadian to fund services and research into autism, but Mr. Howard noted it was just as important to educate people about Autism Spectrum Disorder, and about the difficulties people with disabilities face.
Langley School District’s Coordinator for Autism Spectrum Disorder Diana Wilk agreed after Mr. Howard’s presentation that there is a lack of understanding around autism issues. Langley staff receives training from the Provincial Outreach Program for Autism and Related Disorders (POPARD).
Ms. Wilk noted that there are excellent resources for anyone wants to learn more about the disorder at the POPARD outreach site: www.autismoutreach.ca/. The site’s introductory page notes that the symptoms of autism include impairment of social interaction, deficits in ‘expressive and receptive verbal and non-verbal communications and ‘atypical stereotyped or repetitive behaviours’.
Mr. Howard noted that he has met hundreds of people with autism across the country, and that the experience has taught him to empathize with them. “Can you imagine when you’re hungry not being able to say ‘I’m hungry?’,” he asked the students.
But he also learned that people with disabilities have dreams, too, and they can show the same kind of spirit that Mr. Howard himself showed in his 10 month odyssey. Paralympian Terry Robinson joined Mr. Howard in Ottawa and travelled 2,750 kilometres during a three month stint on the Run the Dream tour - all the way to Winnipeg.
That proves a point Mr. Howard wanted to make. “I want to show that when you have support and services you can do anything,” he said.

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

A nice awareness article from CTV:
Autistic boy helps launch charity to help homeless
Updated Wed. Dec. 24 2008 9:13 AM ET

CTV.ca News Staff

A seven-year-old autistic boy is trying to make this Christmas a special occasion for the homeless in Western Canada.

About two years ago, Stephen McPhee heard about a news story describing homeless people near his family's Calgary-area home and decided that he wanted to help.

Stephen doesn't talk a lot, so he didn't waste many words describing what he felt and why he knew he had to do something.

"I just don't like it when they're on the street," Stephen told CTV.ca during a Christmas Eve interview.

That's exactly what he told his mother, Nancy McPhee, and the family decided they would help Stephen take action. So, they loaded backpacks stuffed with Christmas gifts and distributed them to needy families around their city.

The backpacks include essentials -- mittens, hats, clothes -- that the homeless and their families need, but they also have items such as crayons and toys for the kids.

That first year, they were able to load 15 backpacks for the needy, distributing them with the help of local charities. But Stephen's mom says the little boy knew they could do more. The next year, he told his mother he wanted to distribute 150 backpacks.

Nancy McPhee said she told her son that his goal was quite a bit more than their original 15. Undaunted, little Stephen had the perfect response, she says.

"Mummy, you have to dream out loud," Nancy said he told her, describing the boy's enthusiasm about the project.

On his website, Stephen describes how his charity grew.

"I wanted to make more so my sister helped me write a letter and tons of companies and people in Aridrie (Alberta) helped make over 265 backpacks," Stephen wrote.

"Every backpack had a huge bow and lots of neat toys and mittens and school stuff inside. We had fun in a donated school bus taking them to Inn from the Cold on Christmas Eve."

This year, his charity -- Stephen's Backpacks Society -- will distribute about 1,000 backpacks. They now have about 100 corporate sponsors and more than 100 volunteers throughout Alberta to help them.

Nancy McPhee has even written a book -- aptly titled "You have to Dream Out Loud" -- to raise more money for the working homeless and their families.

She says Stephen's generosity has captured the hearts of his neighbours and many others throughout Alberta.

"It's crisp and it's real and it's a very strong message," she said, adding, "I think Stephen tells it well. Let's just do it."

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

Another nice awareness article from the York Region papers:

Guided By Love
Julie Donner Anderson
Published on Dec 29, 2008

Andrew and Verdie.
Although his new family member Verdun, or Verdie as he was nicknamed, has bad breath and a shedding problem, Andrew Tremblay couldn't be happier.
After almost three years of waiting for his arrival, the boy is thrilled the black Labrador retriever is finally home to stay.
Verdie is a graduate of the National Service Dogs program, a registered charity in Cambridge, Ont. that provides guide dogs to families of Canadian children two to eight who, like Andrew, have autism spectrum disorder.
ASD children have a tendency to bolt, making safety a concern for parents, so NSD dogs are trained to help these children safe in public and keep them from wandering in a classroom environment. The dogs also facilitate socialization of the child with society and provide a therapeutic calming effect while bonding with their small masters.
Andrew's story began in 2005 when Martine Tremblay, his custodial grandmother, read a newspaper article about NSD and how autistic children benefit from guide dogs.
She applied the same day, but Martine was told the waiting list was between two and three years. The dogs are free to accepted applicants, but fundraising is strongly encouraged to cover the $12,000 it costs to raise and train the dog and applicant.
"I owe The Banner a debt of gratitude," Ms Tremblay says of the community newspaper. "After they printed an article in 2006 about my desire to acquire a service dog for Andrew, the community rallied. The Lioness Club of Newmarket read our story and raised $8,000 through a charity dance and silent auction that year."
Queensville Public School (where Andrew attends) also held a fundraiser garage sale and donations came in from local businesses, including Di And I Hair Salon, the shop Ms Tremblay co-owns, which hosted a doggie shower Â¬Â¬- kind of like a baby shower, but with rawhides and dog treats instead of diapers and bottles, she adds.
What touched Ms Tremblay most were the donations from children.
"Two little boys came into the salon with their dad and donated fistfuls of coins from their allowance," she says, choking up with happy tears. "I am so grateful to everyone in this community who gave from their hearts, whether it was money, publicity or just their kind words of support."
During the wait time, when applicants are busy raising funds, NSD puppies, which are almost all Labrador and golden retrievers bred by NSD, start their journeys to become working dogs.
First, the puppies stay with foster families for 12 to 14 months. While in foster care, the puppies are screened for aptitude and qualifications. A foster family is instrumental in teaching the dog simple commands such as "sit" and "stay," as well as walking on a leash, keeping clean in the house and toileting routines.
Puppies that do not qualify are usually adopted by their foster families or trained as companion dogs for other special needs children who do not have safety issues.
Those pups that pass the foster care regimen are trained at the NSD facility for four to six months, where they learn to wear a vest-like jacket when working. The vests identify them as service dogs on the job.
During this intense training, applicants are required to be trained as well.
At the end of September this year, Ms Tremblay spent a week at the NSD facility, training alongside the dog and learning how to give commands.
"It was intense, but gratifying," she say. "The dogs were with the families 24/7. They even slept in the hotel rooms with each of us."
"While they are working, the dogs are actually tethered to the kids," NSD co-founder and director of business development Danielle Forbes says. "We take applicants and their dogs out in public the entire week. The dogs work with the families in keeping the child safe at all times."
NSD dogs are trained, using a reward system, to sit and stay at every corner and obey the commands of the parent. Thus, if a child is tethered to the dog, he isn't going anywhere.
For parents of children without bolting issues, tying a child to a dog may seem a little restrictive, but it actually gives the child and the family more freedom. Many families actually do not go out in public if they have a child who runs because it's just too stressful. With an NSD guide dog, the child doesn't have to hold a parent's hand at all times and even a casual stroll down the sidewalk becomes more enjoyable.
Once the week of intensive dog/applicant training at NSD is complete, the successful dogs go home with their new families.
"It's a very small number, but not all dogs work out," Ms Tremblay says. "Still, NDS makes sure every family accepted into the program eventually gets a dog. NSD supports the child to adulthood. Sadly, dogs die, and if an NSD dog does, it will be replaced free of charge until a child is 18." Even when a dog retires, the family can adopt it as a pet and a new dog will be introduced as the working dog.
NSD also helps integrate the dog with the child's school. Meetings are conducted between parents, NSD facilitators, teachers and the principal. When it is time for the dog to accompany the child to school, NSD holds an assembly with the whole school to introduce the child and the dog. Children learn quickly the dog in the purple vest is working and cannot be touched or played with.
When Verdie is not on duty, he is simply Andrew's buddy, playing together on the trampoline and swimming in the pool. Bonding between child and dog is essential and begins with teaching the child how to care for the animal's needs, such as feeding, grooming and veterinary appointments. The child also learns the dog cannot be given "people food" so it won't be tempted to eat schoolchildren's lunches.
Although Verdie's official NSD training is complete, with the facility's support, Ms Tremblay plans to teach the dog American sign language, just as she taught her grandson.
"Andrew in non-verbal and communicates through signing," she says. "He's already trying to teach Verdie the signs for 'come here and love me'."
When it comes to a boy and his dog, the signs of love are already evident. Andrew will not go to sleep without Verdie at the foot of his bed and Verdie wouldn't have it any other way.
- Julie Donner Andersen is a freelance writer and local author of two books. Her website is juliedonnerandersen.com

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And yet another great awareness article from the Hamilton Spectator:
Lacey bloomed at summer camp
Autistic, deaf girl became counsellor

Carmela Fragomeni
The Hamilton Spectator

GLANBROOK (Dec 31, 2008)
Lacey Ouwehand's annual summer camp experiences had such an impact, she is a now a junior camp counsellor -- not an easy feat, since Lacey is autistic, obsessive compulsive and deaf.
Lacey, 20, spent two weeks every summer since she was 12 at the local YMCA summer day camp downtown and at Camp Chippewa at Christie Conservation Area. Through a program called Helping Hands, she had a counsellor dedicated solely to supporting her each day.
The camp did wonders for a shy Lacey. She learned to be more social in a positive way and to better control her obsessive compulsive behaviour, says her mother Janet.
The camp held Lacey's interest because campers were always busy doing something different every day and she made new friends. She learned new skills such as swimming, and discovered she likes archery, said Janet.
She also taught the younger kids sign language.
"If she didn't go to camp, she wouldn't be able to reach out to people like that."
Each year, Lacey gained more independence until she now helps other children.
Last summer, Lacey instilled confidence in a shy and withdrawn four-year-old boy who was also hearing impaired, says Bryan Webber, vice-president of financial development with the YMCA of Hamilton/Burlington. "I thought that was a remarkable influence to have on a little guy."
But Lacey could never have attended the camps if not for the local United Way, which funds the cost of one-on-one counsellors. Janet says she couldn't afford the hundreds of dollars necessary to provide this kind of support.
"If she didn't have the camp or school, she wouldn't be who she is today. She's grown up, matured ... she's come a long, long way."
The United Way of Burlington and Greater Hamilton provides the Y with $240,000 a year to enable children and youth to attend programs their parents can't afford, said Webber. Of that, $15,000 goes for children with special needs to attend the regular Y camps.
"Without the United Way, we can't provide the one-on-one counsellors," Webber said, adding the program helps about 20 to 30 kids a year like Lacey.
"So the United Way has been an important partner. Look at the impact -- Lacey went from being in her own shell to coming out and helping others. It's amazing."
The United Way is about 20 per cent short of its current target with about a month left in its campaign.
cfragomeni@thespec.com
905-526-3392

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This article appeared in the Star regarding the changeover from institutional settings to group homes for adults with developmental disabilities:

Residents adjust to living in group homes

YVONNE BERG FOR THE TORONTO STAR
Wendy Sayer, 63, loves to choose her nail polish colour at O’Brien House, a group home for 10 intellectually disabled adults in Shanty Bay near Barrie.
The end of an era
It's the end of an era.
Advocates for the intellectually disabled are cheering as Ontario moves to close its last remaining institutions, following the example of Newfoundland, British Columbia and New Brunswick.
"It's an extraordinary victory for people with intellectual disabilities in Canada and internationally," says Michael Back, executive vice-president of Canadian Association for Community Living.
"Society needs to come to grips with the history, the injustices and the abuse of institutions," says Bach. He compares the situation to the abuses experienced by native Canadians in residential schools.
In 1970, Canada had a whopping 33,000 people in facilities for the intellectually disabled (formerly called mentally retarded) with the majority being in settings of 100 people or more, he says. Today, the total in the country is about 2,500, with more places preparing to close. It's estimated that roughly two per cent of the total population have an intellectual impairment ranging from mild to profound.
"We've made a definite difference in 35 years," says Bach, adding the next challenge is to truly integrate those with intellectual disabilities in the day-to-day activities of the broader community.
"Most people have not found common humanity with people with intellectual disabilities."
Trish Crawford
Used to large institutions, intellectually disabled and their families adapt to group homes
December 27, 2008
Trish Crawford
LIVING REPORTER

Wendy Sayer is methodically counting her money, picking up each coin from her bedspread and putting it in her little change purse.
She does this a couple of times a day and enjoys the sound of cash jingling in her purse when she heads off on an outing.
Partial to coffee and doughnuts, Sayer has hit many Tim Hortons and Second Cup coffee shops near her new home in Shanty Bay, about a 15-minute drive from either Barrie or Orillia.
In many ways, her daily routines haven't changed much since she moved to O'Brien House, a group home for 10 intellectually disabled adults late in August. Back in Orillia's Huronia Regional Centre, where she lived for most of her 63 years, she also bought coffee in the tuck shop, helped with the laundry and went on many outings in search of sweet treats.
What's changed now is that Sayer has her own bedroom, which is filled with her own furniture, and she is part of a much smaller group of people than in the past. From living among thousands of similar souls, Sayer now shares space, grounds, staff and activities with only nine others.
Whereas the government of Ontario once had full responsibility for her health and care, now a non-profit community agency called Simcoe Community Services is responsible for her well-being. The era of on-site doctors, dentists, hearing and sight specialists is over and she must visit area physicians for her regular blood tests and other care.
Ontario has been speedily moving toward closing the last three institutions for the intellectually disabled by its target date of March 31, 2009. At one time, more than 6,000 people lived in the three mammoth facilities in Orillia (Huronia), Smith's Falls (Rideau Regional Centre) and Blenheim (Southwestern Regional Centre). Today, only 36 people remain in two institutions. .
Whereas institutionalization was once the only option for families with intellectually disabled children, now it is no option at all.
For the past four decades, a growing number of families have chosen to raise their disabled children at home. With few new residents, the population at the centres got older and deinstitutionalization has primarily involved the placement of aging residents (average age 51) with the attendant physical and social difficulties of advancing age. Of the 905 residents who moved into the community by November 2008, 28 have died and 56 have moved into long-term care facilities.
This is a worldwide movement and Ontario is just one of hundreds of jurisdictions which have rejected large institutions in favour of small community settings.
It has not been without controversy, however. Sayer's family, for example, was part of a parent group that took the government to court to stop the closings. In the end, the court ruled that the province could close the institutions but stipulated it must provide placements satisfactory to the residents' families, or return to court.
Lyz Sayer, 60, Wendy's younger sister, says her greatest concern was that her sister would not get the medical care, staff attention and social interaction she needed and had received at Huronia.
"I wanted some place larger. She was brought up with a lot of people around her; she is very social. I didn't want her locked in a house in the suburbs. The more residents you have, the more staff you have."
Sayer says Huronia set the gold standard for care and was better than most group homes.
The requirement for family approval meant that Sayer's insistence on a large, rural setting and gradual transition were met and she is delighted with the home.
"We got to put our foot down as to where Wendy went," she says.
This didn't come cheap. Ontario will spend $1.5 billion in 2008/2009 for developmental services.
Roughly $100,000 per resident was provided in capital funding so agencies could create more space for those leaving institutions, resulting in a building bonanza for some agencies.
"They built a house for us. It's really amazing," says Douglas Graham, 86, who describes his son Richard, 59, as "profoundly retarded and deaf."
His son had lived in Rideau Regional Centre for 46 years and Graham had also gone to court to stop the closing of that facility.
Later, accepting the inevitable, he set out to find a rural area for his son to live in and was pleased by the operations of the small Community Living North Grenville, which proposed building a new house in Kemptville to house Richard and three roommates who would move together.
The four men got taken on frequent trips to the building site, says Graham, adding that Richard was among the first to leave Rideau in its last push to be emptied of residents. "It is a lovely home with every convenience. He is doing very well."
These types of conversions are common, say experts in the field, if transition planning is done well and parents get to have their voices heard.
"It is heartwarming to see these parents come on board," says Madeleine Meilleur, minister of community and social services, who has visited many group homes in the past few years. "They were afraid because of the unknown."
Ted Shuh, executive director of North Grenville, says his agency, which supports 115 people with intellectual disabilities, took 18 former residents of Rideau. It handled the increase by building one house and buying a duplex. These buildings are permanent resources that will last after the residents die, he points out.
"Facility dollars come and stay in the community."
Over in the Essex county, near Windsor, similar building occurred, something that was affordable for more rural agencies but difficult to do in places such as the GTA where land prices are higher.
Nancy Wallace-Gero, executive director of Community Living Essex County, says over the years her agency was able to take 40 former residents of the southwestern Ontario facility which now sits empty. They were able to build four homes and construct additions such as self-contained en suites for existing homes.
In Essex, the provincial government provides operating expenses of about $75,000 per resident (within the institutions the costs were about $100,000 per resident). It was challenging to meet all of the needs in the community, admits Wallace-Gero, citing the cases of severe behavioural problems.
Time and time again, she says, behaviour issues diminished once the person left institutionalized care. Also, she adds, residents needed less medication and interventions once in their new homes.
"It's all about the quality of life and the wonderful opportunity to live in the community," says Wallace-Gero, who grew up in a family of 12 children, two of whom had intellectual disabilities. As a young girl, she remembers her family visiting a regional centre where their two disabled foster children were scheduled to move.
"They came back and said, `We can't allow them to go there. What are we going to do? We have to protect them,'" she recalls.
As a result, the family adopted the two children and inspired Wallace-Gero to help others with disabilities live in the community. However, she acknowledges it has been a leap of faith for families who believed that institutional life provided more services.
"We had families who were very concerned, who were so against it, and now those same families are very happy."
Greg Cavers, 47, remembers the day his uncle Bob Cavers, 67, moved into his group home in Cotten, Ont., 2 1/2 years ago.
"You should have heard his language when he moved. I knew he was angry. He wasn't the sweet Bob I knew," says Cavers.
Put in charge of his uncle's affairs, Cavers was shocked to read his grandmother's direction that Bob, who has cerebral palsy, should "never go to a group home."
Although the regional centre "was spotless and vibrant" when Bob first moved there 25 years ago, its proposed closing had led to fewer resources being put into the place in recent years, says Cavers. Bob went downhill.
"Back in the day, he had been vibrant and talking. But, in the past 10 years, he had been in decline, mostly a silent state."
Moving into a house with three other former residents of the centre has changed all that, Cavers says.
"It's miraculous. I can't say enough about the situation. He's close to home, he has the same doctor, dentist and optometrist as me. We just got back from his Christmas party. Bob has a better social life than I do."
When Kevin Boyle's father died, his mother had to find a job and subsequently put his brother, David, now 49, in the Southwestern Regional Centre.
"Thank God, the institution was there," says Boyle, 47.
Although he is grateful for the excellent care his brother, who has cerebral palsy and uses a wheelchair, received at the centre, Boyle says the new situation is an improvement. He now lives with three others in a home in Tecumseh.
"I wish it had been available years ago."
The range of activities has greatly increased in the smaller setting, he says, adding, "David got on a plane last year and went to Florida to visit his mom. The staff went, too.
"It was a wonderful thing."
________________________________________
But not all families are happy . . . . .
Huronia Regional Centre once housed more than 2,500 people with intellectual disabilities. Today, it is virtually an empty shell on the sprawling lakeside property in Orillia, home to only six residents.
But those last six are not leaving without a fight.
Sofia Papagiannis, whose autistic son Peter, 40, has lived there since he was 7 years old, is unhappy with the few options being offered her son. She says she has only been shown one group home in Toronto, which was crowded and unsuitable for her son.
She refused to visit a second group home in the far west end of Etobicoke, explaining it would be difficult to visit her son that far away.
"We are getting older not younger," the Greek immigrant says. A family friend picks Peter up each weekend and drives him to Toronto for visits.
Sitting at their dining room table in North York, surrounded by binders and folders filled with documents about Peter's life, Sofia, 63, and John Papagiannis, 73, wonder what happened to the promise that families would be involved in their children's transition to the community and that they would get final approval on placements.
Stories of homes being built for former residents and multiple housing situations being offered seem like fairy tales to the Papagiannis family.
"They are saying take it or leave it," says John, a bartender.
Sofia has researched other community resources and asks to be given more options, she says. "We see lots of places around Toronto with lots of activities," she adds.
The provincial government, which controls the transfer process, replied that she should see a lawyer. Under a judicial ruling, the provincial government must return to court for approval in situations where the families refuse to sign off on any transition plan.
Families of the other five residents, three men and two women, declined to be interviewed because of pending litigation.
Peter's parents have spent their entire lives fighting on his behalf. They say an intellectually disabled child is a child forever.
Everything was fine until Peter appeared to suffer a seizure when he was 9 months old. In the end, no one knows what happened but Peter, who had been eating food, could only drink milk or juice for many months. He didn't take his first step until he was 2 years old and he still doesn't talk.
Peter likes to go for car rides, says John. "He knows I'm his daddy. He knows when it is Saturday – he is happy and singing. He puts his hands in my pocket for the keys to the car. He tries to open the car."
They wonder if the steam has gone out of the government's drive to find the best possible placements as the numbers dwindle to the final few.
Madeleine Meilleur, minister of community and social services, declined to comment on the situation.

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This is a great article from Lindsay Moir - remember his words to ensure you let your Principal know of the needs of your child in regards to why they need full time support:
Ask Lindsay Moir:
EA Allocation
Friday, January 09, 2009
Question:
I'm a teacher and a parent of a child with exceptionalities. Recently I was at a meeting where this was said aloud: "even if the child is allocated EA support, the EA is allocated to the school and the school can use that EA allocation as they see fit."
This translates into children with EA allotment receiving no support and children who have "safety issues" but no "paperwork" getting support.
Parents bend over backwards to get assessments done and if the child is quiet and not a problem they may not get support.
Can school boards, and more specifically schools, really take allotted EA support from one child and give it to another? I find this very unethical.
I selected this e-mail because I have had several calls this week regarding "migration" or re-allocation of EA resources after the Christmas holidays (or for semester 2 in high school) I will incorporate some of these calls in my response.
Answer:
EA Ownership.......always a difficult thing to explain! Generally speaking the exceptional child does NOT have the right to an EA, but they do have the RIGHT to have their needs met.
Two of the problems that arise frequently are:
Schools often allude that the parents need specific assessments or diagnoses to get an EA (NOT TRUE) and therefore the parents seek out and often pay for, extensive assessments and get a diagnosis — and then expect this to guarantee the EA.
While testing and diagnosis can be helpful in determining the needs, they are NOT a passport to an EA for a child! This is why we need to spend a lot more time clarifying NEEDS — NEEDS draw resources.
Parents invest a lot of personal time and their own resources, training an EA to have the skill set to work with their child. In one case, they created an excellent behavioural resource for the board. Everything was well-managed for their child — so well managed that the EA was moved to work with an "out of control" child, leaving the original child with no support, and sudden regression to "old behaviours." Even if another EA is assigned (not happening yet) there will be a huge training gap, AND a frustrated parent!
Often in workshops I make a "Shock Statement" which becomes a base for discussing this issue. I say, "In over 40 years in special education, I have NEVER met a child who needs an EA!"
After everyone has calmed down, I go on to explain that an EA is a response to a NEED, not a NEED in itself!
An EA is one of the ways that a school can meet the child's need (and if no EA is available, then the principal is not off the hook — he/she has to find another way to meet the need).
This has been a successful strategy over the years — "WHAT needs to be done, not WHO does it."
Skill set and training are always an intricate part of the staffing plan (or SHOULD BE). Whether the "training" is informal, from family support worker, therapist or parent, or formal from a college program, in some cases this knowledge is critical to success with the child. In other situations, general knowledge is all it takes! In some cases, transitions are difficult, and any change needs to be carefully managed to prevent regression.
In others, change is easily accepted by the child. One-size does NOT fit all. A person cannot provide sign language of they can't sign. A person can't provide physical support if they can't lift. A person cannot provide behavioural support if they have no behavioural training. SENIORITY only applies if two candiddates have equal qualifications.
For most parents, whether the support comes from an EA, a placement student, or a trained volunteer does NOT matter. The attitude of the educators and the support person is a BIG deal to most of us!
I agree that the child who is compliant, accepting and will just "veg out", often gets a lot less support than the behavioural child! It is essential that their advocate (parent or community worker) stressess the NEEDS that are not being met (UNACCEPTABLE) and insists that the school provide the necessary support.
The Education Act does not guarantee any pupil an EA — section 170(1)7 does guarantee them the support to meet their needs.
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A listmate shares this and encourages everyone to help out her contact with this study:

Support Groups for Parents of Children with ASD: Predictors of Involvement

You are invited to participate in a study on support group use in parents of children with Autism Spectrum Disorders.

Researchers: Tess Clifford, MA (PhD Candidate), Patricia Minnes, PhD (Department of Psychology, Queen's University)

What do we want to learn? We want to learn about the experiences of parents of children with autism spectrum disorders (ASDs). We are especially interested in your experiences with parent support groups, and would like to learn how best
to support all
families of children with ASDs. If you are interested you will be invited to participate in an online parent support group.

How long will it take? There are 5 questionnaires that will take about 1 hour to complete, however, they can be completed at different times (over a one month period). Please be sure to complete. ALL parts otherwise the data cannot be included in our study.

Who can participate? Parents or guardians of a child diagnosed with an ASD are invited to participate.

How can I participate? Click here to get more information about the study. (https://sites. google.com/ site/ASDParentSu pportGroupStudy) Follow the directions on this page to register with ASD-CARC or login if you are already registered.

If you have any questions about this study, please contact Tess Clifford at 4tc29@queensu. ca.

Thank you for your interest!

Tess Clifford, M.A.
PhD Candidate
Clinical Psychology Program
Department of Psychology
Queen's University
https://sites. google.com/ site/ASDParentSu pportGroupStudy/

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A listmate shares about a new centre for services for Simcoe County:

We are a non-profit agency servicing children with a wide variety of special needs. Children seeking services do not require a diagnosis to obtain services with us. We service children 0-18 yrs. We have Centres in both Aurora and Barrie. We offer both Centre Based services as well as services provided in the home, school, daycare and community.

Our program offering includes: Early Learners Step 1 (Toddler Group Program), Early Learners Step 2 (Pre-school Group Program), IBI/ ABA and Verbal Behaviour Programs, Social Skills Program (teaching how to navigate the social world), and Play Skills Program (looking at teaching imaginative and pretend play). We also offer distance supervision for families who wish to hire a team a therapists directly but required clinical supervision and training for parents and team. In addition we offer Assessment, Case Management and Consulting Services, and Parent and Professional Workshops on a wide variety of topics.

The link to our website is www.providencelearningcentres.com

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And this is a US article, but relevant to all of us:

Study Shows Increase Is Real, Not Just Due to Changes in Diagnosis Criteria

By Daniel J. DeNoon, WebMD Health News, Reviewed by Louise Chang, MD

Environmental factors may be partly behind California's eightfold rise in new cases, a new study implies.
Many researchers have believed that the continuous increase in autism cases over the last decade -- particularly the huge increase seen in California -- isn't real, but can be explained by "artifacts."
Among these artifacts are the recent broadening of the diagnostic criteria for autism and greatly increased diagnosis of autism at younger ages. Both these factors could make it seem like there are more autism cases than there were before.
These artifacts do explain part of the rise in autism cases, shows a rigorous study by Irva Hertz-Picciotto, PhD, MPH, chief of the division of environmental and occupational health at the University of California, Davis.
But even taken together, they don't explain even half of the huge increase in cases.
"When you put it all together, this doesn't come close to explaining the increases in the last 10 years," Hertz-Picciotto tells WebMD. "The more you whittle away at this increase, the more you have to say that what is left over is real. ... Given that autism cases keep going up, and can't be fully explained by artifacts, environmental factors deserve serious consideration."
Hertz-Picciotto notes that her study does not account for one potentially huge artifact: The fact that today's parents are vastly more aware of autism than they were a decade ago.
Autism can't be diagnosed unless you're looking for it -- so parent awareness has a huge potential effect on the rise of autism, says Gary W. Goldstein, president and CEO of the Kennedy Krieger Institute and professor of environmental health sciences at Johns Hopkins University.
"There is an enormous increase in awareness. Everybody knows about autism now, and they didn't 16 years ago," Goldstein tells WebMD.
"The awareness thing is very hard to quantify," Hertz-Picciotto says. "But at some point, as more and more parents became aware of autism, the increase should have leveled off. Instead we see a continued increase in autism."
Hertz-Picciotto notes that the lion's share of autism funding is going to genetic studies. She argues that it's high time more effort was put into looking for environmental factors that cause autism in genetically susceptible individuals.
"Time is passing and science has a lot to do to find the real causes of autism," she says. "A lot has changed in the environment over the last 10 to 15 years. And I paint with a broad brush when I say environment: These changes include things like medications people take and assisted reproduction technology as well as what is in soaps and pet shampoos and toothpaste and so forth."
Autism expert Michael L. Cuccaro, PhD, associate professor of human genetics at the University of Miami, praises Hertz-Picciotto's systematic study of the rise in autism cases. He agrees with her that it's time to consider environmental factors as part of the cause of autism.
"I don't think it is premature to look for environmental risks," Cuccaro tells WebMD. "There are environmental risk factors that give rise to a wide range of developmental conditions, and there's no reason to think autism isn't one of them. And papers like this are critical to get to this point. Because you have to convince people it is not explained by all these other factors."
Environmental studies are already under way -- and research organizations are eager to fund them, Goldstein says. But the difficulty goes far beyond funding.
"We only have 20,000 to 25,000 genes. But we have a hundred thousand environmental exposures. How do you control for that?" he says. "And your genes stay the same, while environmental exposures may have come and gone. It is difficult to do these studies -- the problem is not that it isn't thought to be important."
The Hertz-Picciotto study appears in the January issue of Epidemiology. The study is co-authored by Lora Delwiche

Autism Sweatshirts are on Sale!
On a Personal Note...
I cannot help but share my excitement with my "online community", but this week Matthew has started talking in school again! He quit talking at school in October of 2007 and until this past Monday had not uttered a sound since. (he makes plenty of noise at home - singing, spelling words, quoting his favorite shows, etc) Through lots of hard work and trying many, many approaches - he finally opened up again. We are so thrilled that I just had to share it with everyone - it's the little things in our lives that make such a big difference.
Click here to see my January Specials!

________________________________________
Canvas Totebags are on sale!
NOW ONLY $10.00! Lots of great new sale items for the New Year!
Swarovski Crystal Bracelet
ON SALE FOR $28!

ALL Sweatshirts are on sale for January!

Youth Sizes are $16.00. Adult Sizes are $18.00

From Autism Today
Breaking News: 1-6-09
Long time friend and presenter for Autism Today conferences, Keri Bowers has been invited to be interviewed by Access Hollywood and Extra, related to the Tragedy with Jett Travolta and his unfortunate passing. Our prayers and condolences to the Travolta family. Keri has worked closely with Joey Travolta over the past years in the development of her films: "Normal People Scare Me".

Please go to Autism Today to read the story.

Sincerely,

Autism Today
news@autismtoday.com

Exceptional Resources

1425 Broadway
#444
Seattle, WA
98122
US

From taline
There is quite a bit of information through the new site: http://www.canadianswithdisabilitiesact.com/

This has been an issue in discussion for over ten years now and it is time that the vision comes to fruition. Please go through the new site and complete and send off the template forms and pass on to others, including groups and individuals representing other disabilities. There is also a link in the site to the facebook group. A CDA would not be autism specific.

Taline Sagharian

Google alert
Autism's financial toll grips parents
07:16 PM PST on Sunday, January 4, 2009
By JENNIFER DEAN
The Press-Enterprise
Parents of autistic children feel they are "financially drowning," a new study by the non-profit agency Easter Seals finds. Worry over medical and therapy costs, as well as time missed from work, preys on the minds of parents and the children they care for.
"My son is worried that if I die, he will have to live in a park and be homeless," said Moe Mendoza, of Ontario, mother of 12-year-old Nathaniel, who has autism.
The Easter Seals' Living with Autism Study found 74 percent of parents surveyed fear their children will not have enough financial support after they die. Many are very concerned about their child's future independence as an adult, especially as it relates to financial independence, quality of life, social and interpersonal connections, employment and housing opportunities.
Story continues below

Greg Vojtko / The Press-Enterprise
Nathaniel Mendoza, 12, of Ontario, was diagnosed with autism when he was 8 years old.
Moe Mendoza's son was diagnosed with autism two weeks before his 9th birthday.
"We always knew something was wrong," she said. "When he was younger, we were always in hospital emergency rooms. And at school, he was always hiding under the tables and he couldn't initiate any friendships."
At the time of the diagnosis, Mendoza was married to Nathaniel's father, but they split up within a year and she is a single parent.
"When Nathaniel realized his dad and I were really separated, he started wondering what would happen to him when I die," she said. "There's a park in Ontario with homeless people and he worries that's what will happen to him. He wants to find a way to end homelessness."
The Easter Seals study, conducted by Harris Interactive in conjunction with the Autism Society of America, was sponsored by corporate partner Massachusetts Mutual Life Insurance, which helps families with individuals with special needs access financial strategies for care and future needs.
Mendoza has spent time learning the ins and outs of dealing with county and federal agencies. She helps other mothers in her monthly support group locate agencies and fill out paperwork for financial support.
Moms Night Out, which meets monthly in San Bernardino, is made up of mothers with special needs children.
"A lot of people don't understand the emotional toll of raising a special needs child ... and what it does to a marriage," Mendoza said. Talking with other women in the same situation is helpful.
Nathaniel is an example of why early intervention is important, she said. The research shows that therapy from an early age can make a huge difference.
By the time Nathaniel was diagnosed it had already become difficult to transition him into public school.
He has been kicked out of two public schools and one afterschool program, Mendoza said. He is currently in a non-public school and is working to transition back into a public classroom.
Story continues below

Greg Vojtko / The Press-Enterprise
Moe Mendoza says her son, Nathaniel, 12, worries about his future should anything happen to her.
Mendoza is on the Ontario-Montclair School Board and she hopes serving on the board will give her an opportunity to speak for families with special needs children.
"Financially, you can't take care of a disabled child alone," she said. "You have to know how to fight for your rights."
The only place Nathaniel has made real progress is the Casa Colina Rehabilitation Center in Pomona, Mendoza said. The center has a social skills program for children severely impacted by their disability.
To pay for these services, Mendoza found non-profit agencies willing to help.
Another organization paid for her plane ticket to the California Legislative Blue Ribbon Autism Commission meetings in Sacramento, where she spoke about the education concerns and financial difficulties of raising a child with autism.
There are agencies that can help with rent, utilities and other cost-of-living expenses in times of dire need, she said. "Unfortunately, that happens occasionally."
The Family and Medical Leave Act provides some protection for parents who are called out of work for medical or health conditions of a dependent, Mendoza said.
But, that doesn't mean bosses are always understanding. And that doesn't mean the leave is paid.
Mendoza works as a secretary for Lanterman Developmental Center in Pomona.
"It takes an emotional toll every time I have to leave work," she said. "I can't afford to buy a home because I miss so much work ... I worry all the time about the costs of his education, medical treatment and what would happen to him if something happened to me."
"This study quantifies what we've heard anecdotally over the years," said Patricia Wright, Easter Seals' national director, autism services. "There is an urgent need for increased funding and services."
For more information on Easter Seals, visit www.easterseals.com. Read about the resources available for people with special needs, their families and caregivers at www.massmutual.com/specialcare/resources.
Reach Jennifer Dean at 951-368-9336, jdean@PE.com or http://blogs.pe.com/moms

End of mailing

Autism News Articles Oct 27-Nov 8, 2008

2008-11-09T05:04:00.000-08:00

Autism News Articles

October 27th – November 8, 2008

Alliance for families with autism

Visit

www.autismnewsarticles.blogspot.com

to read archived mail

Our apologies

AFA will be offline with this article mailer for at least two weeks. If you have anything of interest keep sending it. We will post after that time.

A reminder from the Don't Stand Alone Foundation in Barrie :

The Don't Stand Alone Foundation for Children with Autism invites you to attend an open house at Providence Learning Center . This is a new IBI center that has just opened in the Barrie area. This is an excellent opportunity to come , see and hear about the center, learn about their programs, ask questions about their services. Look forward to seeing you there!

Date: Sunday November 9, 2008

Time: 1:00pm- 3:00pm

Location: 92 Commerce Park Dr. , Unit 11, Barrie (near the Cineplex theatre)
Rsvp: Tel. # 721-8607 or 797-0608 or by email at donnacurrie1@ rogers.com

Google alert
Autism Ontario-Durham Region's celebrates Christmas

Nov 03, 2008 - 04:00 PM

DURHAM -- Celebrate Christmas with your family.

Autism Ontario-Durham Region is having a Family Christmas Party on Nov. 16 from 11 a.m. to 2 p.m. at Heydenshore Pavilion, 589 Water St. , Whitby .

Admission if free for full members of Autism Ontario-Durham Region and their immediate family, plus one support worker.

The cost for anyone else is $8 per person at the door. There is no debit or Amex.

Admission includes one free raffle ticket, pizza, dessert and a drink, crafts, activities, quiet room and a gift from Santa (kids only), professional juggler, visit from Santa Claus and a professional photo with Santa.

Maximum attendance is 325.

For more information or to register, visit www.autismontario.com/durham.

Google alert
United Way Swim

November 7, 2008

SIX HARDY SOULS TOOK A "REFRESHING" SWIM IN LAKE ONTARIO THIS AFTERNOON ... PARTLY FOR THE FUN OF IT, BUT MAINLY TO HELP THE KINGSTON-AREA UNITED WAY.

THE SWIMMERS WERE BLESSED WITH SUNNY SKIES AND CALM CONDITIONS.

BUT AS NEWSWATCH'S CHRIS HARVEY EXPLAINS, THEY DIDN'T STAY IN THE COOL WATER FOR VERY LONG.

SIX SWIMMERS GOT OFF TO A ROCKY START, STUMBLING INTO THE WATER ON THE SLIPPERY ROCKS ALONG THE SHORELINE AT FORT HENRY .

THEIR GOAL...TO SWIM ACROSS NAVY BAY TO THE DOCK AT RMC.

PROBABLY THE FASTEST 10 MINUTE SWIM OF THEIR LIVES.

BHAVANA VARMA:

"THEY'RE CRAZY. BUT WE APPRECIATE THEIR DOING THIS.

IT'S WONDERFUL THAT PEOPLE DO THESE CRAZY THINGS FOR US."

THE PRESIDENT OF THE UNITED WAY IN KINGSTON SAYS THE FUNDRAISING CAMPAIGN COUNTS ON DEDICATED PEOPLE LIKE THIS TO REACH ITS GOAL.

BHAVANA VARMA:

"WE'RE THREE QUARTERS OF THE WAY, 2.1 MILLION DOLLARS.

SO WE ARE 75 PERCENT OF THE WAY THREE WEEKS TO GO."

JAY SERDULA WHO HAS ASPERGERS SYNDROME, A RARE FORM OF AUTISM, SPEARHEADED THE POLAR SWIM.

HE'S NO STRANGER TO KINGSTONIANS, HAVING COMPLETED A GRUELING 41 HOUR SWIM ACROSS LAKE ONTARIO IN AUGUST.

AS A WARM-UP FOR THE SWIM SERDULA JOGGED FROM RMC TO THE POINT AT FORT HENRY WHERE THE NOON-HOUR SWIM BEGAN.

CHRIS HARVEY:

"THE WATER WASN'T EXACTLY SWIMMING POOL WARM.

IT WAS A BALMY 58 DEGREES AT SWIM TIME.

AND FOR THAT REASON, BOATS ACCOMPANIED THE SWIMMERS."

THE MILITARY SWIMMING RECRUITS STARTED AS A GROUP, LED BY SERDULA, AND WERE AT THE HALF WAY POINT WHEN ONE SWIMMER ASKED TO BE PULLED FROM THE FRIGID WATER.

AFTER A BRIEF BREATHER, SHE GOT BACK IN AND COMPLETED THE CROSSING.

CAPTAIN JENNIFER HUTTER:

"AND WHAT I FOUND WAS THAT MY BREATHING REALLY SUFFERED.

ABOUT HALF WAY OVER I STARTED ACTUALLY SEEING A LITTLE BLACK.

SO I ASKED THEM TO PULL ME OUT FOR A SECOND SO I COULD GET ENOUGH AIR TO KEEP GOING."

"YOU MADE IT THOUGH"

"UP..IT'S COLD."

THE QUESTION...WHY ON EARTH WOULD YOU DO THIS.?

JAY SERDULA:

"WELL PARTLY FOR THE THRILL OF SWIMMING IN COLD WATER.

PARTLY TO HELP THE UNITED WAY.

I CAN HANDLE THE COLD WATER SO ,MIGHT AS WELL MAKE AN EVENT OUT OF IT.

THEY THINK IT'S GOING TO BE FUN TO WATCH SO THEY COME OUT AND WATCH IT AND GIVE MONEY TO THE UNITED WAY WHEN THEY MIGHT NOT OTHERWISE."

MAJOR ADRIAN ERKELANS:

"HOW WAS THE SWIM.?"

"COLD. THREE OF US WERE NOT VERY GOOD SWIMMERS AND IT TOOK A BIT LONGER THAN WE THOUGHT IT WOULD TAKE.

BUT IT WAS INTERESTING. YOU'VE GOT TO TRY A NEW EXPERIENCE EVERY SO OFTEN AND THAT WAS A NEW ONE."

THE REWARD AT THE END OF THE SWIM, A ROUND OF APPLAUSE, A WARM BLANKET, AND A HOT CHOCOLATE, AND THE KNOWLEDGE THEIR ACTIONS WILL HELP THOSE IN NEED.

CHRIS HARVEY, CKWS NEWSWATCH, KINGSTON .

TODAY'S POLAR BEAR SWIM RAISED 270-DOLLARS TOWARDS THE UNITED WAY'S GOAL OF 2.8 MILION DOLLARS.

Visit

http://iloveachildwithautism.com/index.html

Christmas Ornaments are back!

On-Line Conferening

www.awares.org/conferences

Autism2008 - the latest Awares International Online Autism Conference - opens on November 24, 2008 and lasts for a whole week. Last year's conference attracted thousands of delegates from around the world and Professor Simon Baron-Cohen called it "the best online autism conference on the planet."

As in previous years, Autism2008 is a unique opportunity to put your questions directly to people with autism and international autism professionals. This year's outstanding list of more than seventy speakers includes: Professor Simon Baron-Cohen (UK), Dr Gary Mesibov (USA), Dr Ami Klin (USA), Donna Williams (Australia), Dr Susan Folstein (USA), Merry Barua (India), Dr John Constantino (USA), Dr Carol Gray (USA), Dr David Skuse (UK), Dr Pamela Heaton (UK), Dr Glenys Jones (Wales), Dr Dawn Wimpory (Wales), Dr Wendy Keay-Bright (Wales), Stephen Shore (USA) Dr Roberto Canitano (Italy), Dr Manuel Casanova (USA), Dr Susanne Bejerot (Sweden), Chantal Sicile-Kira (USA), Dr Darold Treffert (USA), Dr Mayada Elsabagh (UK), Dr Sven Boelte (Germany), Nuala and Dale Gardiner (UK), Dr Robert DeLong (USA), Dr Dirk Dhossche (USA), Dennis Debbaudt (USA), Dr Cheryl Dissanayake (Australia), and Dr Amanda Ludlow (UK).

Topics will range from the genetics, neurology and immunology of autism, biomedical approaches, environmental issues, educational methods, autism in adolescents and adults and first-hand experiences of living with autism and Asperger's syndrome.

Autism2008 is open to absolutely anyone with an interest in autism.

To find out more about Autism2008 and receive e-mail updates with all the latest conference news, please take a moment to register now at www.awares.org/conferences and make a note in your diary to join us on November 24, 2008. Please also let anyone else know who might be interested.

Abstracts of speakers' papers will be available online at www.awares.org/conferences from November 17, 2008, and the full papers from November 21.

An online Foyer Café will also be available for delegates to meet and discuss issues prior to the conference.

Autism2008 - the Awares International Online Autism Conference - is organised by Autism Cymru, Wales' National Charity for Autism

Just a reminder that you can register right now for Autism2008 at www.awares.org/conferences

For further information, feel free to e-mail me at adam@autismcymru.org

Best wishes,

Adam Feinstein

________________________________________

AWARES Conference Centre
http://www.awares.org/conferences

From the Autism Tree

You can read more on Autism Tree here:

http://clicks.aweber.com/y/ct/?l=8QDCa&m=1eI_H7ZtM.1D59&b=46FLvzgJ3c.FouOlwTvyQw

Also added to AT this month is the interesting results from a study
done that shows autistic people make more rational choices, plus
another treatment review from the biomedical standpoint - this time
focusing on vitamin B9.

So, if you would like to find out more about how Autism Tree can
help you and your family, copy and paste the following link into
your browser:

http://clicks.aweber.com/y/ct/?l=8QDCa&m=1eI_H7ZtM.1D59&b=46FLvzgJ3c.FouOlwTvyQw

Here's a quick summary of all the entries made to Autism Tree this
week:

Study Shows That Autistic People Make More Rational Choices
------------------------------------------------------------------------------------------
A recent Wellcome Trust funded research study revealed an
interesting positive result from an autism investigation. The
study showed that people with autism spectrum disorders are less
likely to make irrational decisions than people not on the Spectrum
do.
It illustrated that autistic people are less likely to be swayed by
intuition or emotions and are...

Enjoying Thanksgiving
--------------------------------------
As Thanksgiving approaches, you might be looking for some ideas
that will allow your autistic child to join in on the fun of the
holiday. The key to making sure that this celebration goes
smoothly is proper preparation. Some of the following ideas will
help prepare your family enjoy a pleasant time together:
- Cater to...

Vitamin B9 A Bio Medical Approach
-------------------------------------------------
Vitamin B9, also referred to as folate, is a nutrient that is
essential to the healthy functioning of the brain. Folic acid is a
synthetic derivative of Vitamin B9 and can be found in nutritional
supplements and fortified foods. Another derivative product of
vitamin B9 is folinic acid, which is a form that is more...

VIDEO: Flash Cards
--------------------------
An Australian comedian who has a child with autism talks about how
he uses flash cards to communication better.

To become part of the Autism Tree community and receive all the
latest information, practical tips and advice please copy and paste
the following link into your browser.

http://clicks.aweber.com/y/ct/?l=8QDCa&m=1eI_H7ZtM.1D59&b=46FLvzgJ3c.FouOlwTvyQw

Have a great weekend.

Kind regards

Rachel Evans

Google alert
Theaters to offer sensory-friendly film screenings for those affected by autism
08:37 PM PST on Thursday, November 6, 2008

By JENNIFER DEAN
The Press-Enterprise

The Autism Society of America and AMC Theaters are helping people with disabilities do something many people take for granted -- enjoy a good movie.

Sensory-friendly films will offer families affected by autism or other disabilities a special showing of " Madagascar 2" Saturday at AMC Ontario Mills 30 and several other Southern California AMC theaters.

Showings of "Bolt," "Marley & Me" and "Hotel for Dogs" are also scheduled for special viewings over the next three months.

"The idea is to create an accepting and safe environment for these families," said Carin Yavorcik, media associate for ASA. "This is something normal for other families, but can be a big challenge to families with disabilities."

Because autism often comes with sensory challenges such as a hypersensitivity to light or sound, the theaters will lower the sound and raise lights during sensory-friendly films showings. And, there will be no previews or advertisements shown before the movie.

Audience members can also get up and walk, move around, even dance if they want to, said Melanie Bell, vice president of corporate communications at AMC Theaters. And, movie goers can bring their own snacks and drinks to accommodate special diets.

The idea for the program came about last November in the form of a request for a special showing from a parent of an autistic child. Her request prompted the first Sensory Friendly film in a Columbia , Md. , AMC Theater and the response was huge.

"Over 300 people attended that first viewing," Bell said. "Less than a year later, in August, 2008, we expanded the Sensory Friendly Films to 11 theaters in 10 markets.

"I think it's pretty incredible. For many people, this is a first in their life and hopefully it's making a difference."

Reach Jennifer Dean at 951-368-9336 or jdean@PE.com

Special Movies, special needs

Where: Ontario Mills 30, 4549 Mills Circle , Ontario

When: 10 a.m. Saturday

Cost: $6

Information: www.autism-society.org (full list of participating AMC Theaters)

Upcoming Films

Nov. 8: " Madagascar 2"

Dec. 6: "Bolt"

Jan. 3: "Marley & Me"

Jan. 31: "Hotel for Dogs"

From a listmate

ABC News Launches an amazing Online Autism Resource

http://abcnews.go.com/health/autism.

***********************************************************

"60 Minutes" to Feature Musician with Autism
Thursday, November 6, 2008
By: Carin Yavorcik

CBS show tells story of hope

CBS’s 60 Minutes will feature the story of Rex Lewis, a young musician with autism, on November 16.

Rex, 12, is also blind. His mother Cathleen began to notice when her son was young how Rex responded to music, notably classical music. When he listened to classical composers, there was a look on his face that seemed to say, “This I understand.” When Rex turned two, his father gave him a 48-key piano keyboard. At first, the sensation of touching the keys was unpleasant for Rex, but once he heard the notes the magic had been unleashed.

Soon, Rex would play back melodies that, for most, would take months to learn. He had perfect pitch and a phenomenal memory. It was clear that Rex was a musical savant - one of maybe 20 in the world.

Today, Rex swims, bikes, skis, loves to travel and plays some of the most incredible music in the world. “To me,” says Lewis, “my son’s life, his story and his song are about hope. My son knows that it is a wonderful life! And through my faith and my love for a little boy, so do I.”

Cathleen chronicles their story in Rex: A Mother, Her Autistic Child, and the Music That Transformed Their Lives. The two will appear on 60 Minutes November 16; check your local listings for times.

-information from the Autism Society of America

Life is a gift...live each day as a thank-you...to the universe and to God

-Author Unknown

From Racheal

If you've not heard of him, Dr Bernard Rimland was the founder
of the Autism Research Institute; he sadly passed away towards
the end of 2006.

Dr Rimland made the decision to dedicate his life to improving
understanding about autism and also the lives of those with the
condition after his son was diagnosed with autism in the 1950's.

And he then went on to found the pioneering Defeat Autism Now!
(DAN!) programme.

So what is it that Dr Rimland recommended...?

Well, it's nutrients and one in particular - DMG.

You are unlikely to find any large studies on this particular
natural compound in relation to autism, as there are no
restrictions on manufacturing.

So, this means that the big pharmaceutical companies are unwilling
to spend the $'s needed on product trials as there would be no
profit in it for them.

But, there have been studies carried out in which large volumes of
DMG were given to non-autistic people and animals with no adverse
side effect being noted.

So, what are the benefits for autism..?

Parents who have given their children DMG have reported marked
improvements in both speech and behavior.

DMG taken along with Folic Acid, Betaine, Vitamin B6 and Magnesium
work to level out behavior patterns, allow individuals to cope with
stress and help the immune system to work efficiently.

Here is a quote from Dr Rimland about DMG, taken from the Autism
Research Institute website

*********************************

Dimethylglycine (DMG) for Autism

"Many parents have reported that, within a few days of starting
DMG, the child's behavior improved noticeably, better eye contact
was seen, frustration tolerance increased, the child's speech
improved, or more interest and ability in speaking was observed."

Bernard Rimland, Ph.D.
Autism Research Institute
4182 Adams Avenue
San Diego, CA 92116

*********************************

For more information on how using natural dietary supplements could
make a difference in your child's life please copy and paste the
following url into your browswer:
(At the moment there's a special deal running with 20% of the list
price. Although I am not sure how long it is going to last.)

http://clicks.aweber.com/y/ct/?l=8QDCa&m=1pXGghSkdU1D59&b=o7DeJJn5HARFNjboPxyQyg

Until next time.

Best wishes

Rachel Evans
The Essential Guide To Autism Catalog (Use This Link)
http://www.essential-guide-to-autism.com/autism_catalogue.html

P.S: Put the link below into your browser to benefit from the
current special discount offers on autism dietary supplements:

http://clicks.aweber.com/y/ct/?l=8QDCa&m=1pXGghSkdU1D59&b=o7DeJJn5HARFNjboPxyQyg

From Taline

Here is a string of comments now posted online with the Henderson article. You can login in to add yours through here: http://www.thestar.com/article/526268

Taline

------------------------------------------------
Where's the Money (2)?

Some time ago Premier McGuilty signed a letter proudly claiming that his "Government" budgets $60,000.00 for each child with special needs in the school system. I certainly don't see my Board spending $60k on my child. The question remains, where does the money go? Also, there is lots of money to protect the obscenely bloated super profits of the banks and auto companies, but nothing for the people.

Posted By Publius72 at 10:49 AM Tuesday, November 04 2008
Accountability and Transparency Needed

Like the commentator below I would also like to know exactly how school boards and other agencies spend special education funds. The Toronto District School Board has enough money to provide every student with day planners (cost = $800,000), keep swimming pools open (cost = $4 million), but can't afford to provide enough education assistants to support spec. ed. kids. Does anyone believe this?

Posted By Lillie Papps at 7:15 AM Tuesday, November 04 2008

Where is the money?

As the parent of an autistic 8 year old who has been fighting the "system" for almost 7 years, I have some real issues with Minister Matthews optimistic claims. For one thing, the McGuinty Government has talked for years about expanding supports for kids with autism and improving the capacity of the education system. I certainly haven't seen much by way of results. What exactly has been done? The amount of money mentioned by the Minister is impressive, but as parents, we certainly don't see it. Most of it, I suspect, goes to pay bureaucrats sitting in offices and attending meetings rather than providing services. As a final point, the Government's "benchmarks" are nothing more than a thinly-disguised scheme to cut kids off from treatment. Shame on the McGuilty Government!!

Posted By Publius72 at 9:30 AM Monday, November 03 2008

autism and VOC's

More research and information is required on how VOC's from everyday products and materials are contributing to autism, and autistic behaviours. As an adult with multiple chemical sensitivities (MCS/ES), I learned that many of the brain reactions I experience after exposures are considered to be on the spectrum. Some take days to clear up. Karen Slimak and Dr. Scott Faber have and are researching the connection. see: http://www.post-gazette.com/pg/08132/880873-52.stm

Posted By clean air at 6:34 PM Saturday, November 01 2008

From google alert
Saginaw Township , Michigan , mom opening autism center
by Jill Armentrout | The Saginaw News
Saturday November 01, 2008, 1:46 AM

Becky L. Good of Saginaw Township became an advocate for autism treatment after learning that her son, Connor, 8, has the brain disorder.

Good founded Connor's Autism Project in 2006 to help fund autism education in Saginaw Township Community Schools.

Monday, her nonprofit effort will open an autism resource center in leased space inside Mid-Michigan Foot & Ankle Center at 4224 State to help other parents sort through treatment options for their children.

"Our goal is to have available information on every issue we can think of, so parents are exposed to all sides of resources and can make the most informed decisions," Good said.

One out of every 166 children nationwide has some form of autism, estimates the federal Centers for Disease Control and Prevention in Atlanta . That's up from a rate of 3.4 children per 1,000 in 1996. Researchers don't know why the number has risen or exactly what causes the disorder.

The autism center will feature a lending library with print and video resources, magazines and free Web access.

Good and Jamie Lewis of Saginaw Township -- whose son, Braden, 8, also has autism -- will serve as resources, as parents who have faced the disorder.

"A diagnosis is scary," Good said. "We want to share our experiences. We desperately needed something like this center, but there was nothing. We were on our own, gathering information.

"It's important for parents to feel empowered to make decisions.

Good and Patrick Riffel, another parent of a child with autism, lead the project's volunteer board. Other members include Dr. Robert Thill, a pediatrician with Children's Medical Group in Saginaw Township; Louanne Neiderquill, director of special services with Saginaw Township schools; and Patricia Neumann, an instructional assistant for autistic children in the school district.

Thill, who sees Connor Good as a patient, said he is diagnosing more children with the disorder and screens toddlers for symptoms.

"We know that early treatment with behavioral therapy helps the most," he said. "A lot of what is out there is just opinions and hearsay. We need to use evidence-based medicine.

"Treating this is new for many doctors and insurance companies. People don't know who to talk to. This center can be a place for emotional support. It's a good start for this area."

Organizers of the center sent a community needs survey to 400 Saginaw County families of children with autism to determine what services the center should offer, Good said. She and Lewis used their research, along with input from the board, to sort out the information.

They are writing proposals to apply for grants to expand the center library and have a long-term goal of bringing therapists and doctors to Saginaw County to add services here, Good said.

"We want to act as a catalyst to go into the community and work with pediatricians and all the schools. Our mission is to make people more aware of autism and more accepting," she said.

Students and staff at Saginaw Township Community Schools received a 2008 Michigan 's Best award from the Michigan Association of School Boards for their work mentoring and teaching autistic children. Arrowwood Elementary School , 5410 Seidel, also has built a sensory room with lights and sounds to stimulate these students. Good helped spearhead that project.

Message from Sudbury

The Rainbow District School Board is considering partnering with The City of Greater Sudbury to discuss Leisure Programs within the city for special needs.. more as it comes.

*******8

From Nancy ’s List..

Attached to this mailing is infofmation and registration forms for the Independent Planning and Facilitation Symposium on Dec. 2nd.

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

From a listmate, working on collecting some data for advocacy:

Hello everyone,

For Kinark clients, I would like to know how many hours of IBI your
child was funded for. Also, what response did you get if you requested
more hours and when were you approved and by whom?

You can email me privately at tamstarr@rogers. com and please do so by
the end of this week.

Thank you,

Tammy

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

This was shared a week ago, and was to print this week in Access Now, a newspaper in Ottawa . I have held off sharing the advance copy until now:

October 23, 2008.

Autism Update
By Andrew Kavchak

A major concern of any parent of a disabled child is the question of how will their child be cared for once they become adults. With respect to individuals with autism, the situation is disturbing. The Autism Ontario organization (formerly knows as the Autism Society of Ontario) issued a report in October titled “Forgotten” about the lack of programs and supports for adults with an Autism Spectrum Disorder (ASD). To those of us with young children who suffer from autism such reports confirm our worst nightmare.

The reality is that children who are diagnosed with autism at a young age require immediate and intense intervention treatment if they are to develop to their full potential. Unfortunately, OHIP does not cover the cost of treatment and the provincial “Autism Intervention Program” run by the social services department is plagued with tremendous waiting lists and inadequate resources. Parents of youngsters thus try to cope the best they can to provide the necessary treatment. For those kids who are severely affected by autism and cannot be integrated into a classroom, the school system is also inadequate as Intensive Behaviour Intervention (IBI) is not used in the schools to team severely autistic children, even though this is the most effective means of doing so. So parents wonder…does it get any easier as our children grow up? The answer is clearly “No!”.

According to the “Forgotten” report, Ontario has a piecemeal approach to treating autistic adults that must be dramatically changed to support the estimated 50,000 affected adults. These people desperately need educational, employment and social opportunities, as well as supported living options. Parents will do what they can for their children, but eventually old age and death make it impossible to expect parents to care for their disabled children throughout their entire lives. If we are a truly civilized society, then the government must act like one, become considerably more responsible, and move on this issue.

Regrettably, the Ontario government has not indicated that it is particularly sensitive to this issue and it will likely use the current recession as an excuse for inaction or cuts. One particularly disturbing matter concerns Ontario ’s policies with respect to the new Registered Disability Savings Plan (RDSP). As many of you may recall, the federal government announced two budgets ago the creation of the RDSP. Financial institutions are supposed to make RDSPs available to the public for the first time in December, 2008. The plans will allow families to create a tax-free savings vehicles for their disabled children. The plans will allow families to contribute up to $200,000 to which the federal government may also contribute. Once the disabled person becomes an adult, they would be able to draw on these funds for living expenses. The problem is that the provinces provide disability pensions based on different criteria. In Ontario , unless the RDSP is going to be exempt from the entitlement calculation, the existence of RDSP funds may be used by the government as an excuse to reduce or completely eliminate a disabled person’s entitlement to the disability pensions. The Globe and Mail reported several months ago that so far only three provinces have moved to exempt the RDSP funds from the calculations of entitlement to a disability pension. Regrettably, Ontario is on the list of the other seven provinces that have not yet moved to fix this absurd situation and there does not appear to be any sign that the Ontario government particularly cares about this issue.

Please send a message to the Premier of Ontario and to your MPP requesting that they exempt the RDSP from the calculation of disability pension entitlements. It is only fair and reasonable that a family should be able to take measures for their disabled children to minimize the risk of being destitute in their old age.

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

An event to help the fight for IBI funding for Delanie in Hamilton :

"Let's Fight For Delanie" on Monday, December 8 at 6:00pm.

Event: Let's Fight For Delanie
"in conjunction with the December meeting of the Society of the Prevention of Cruelty to Humans"
What: Fundraiser
Host: STOP THE GOV FROM CUTTING OFF FUNDING FOR DELANIE!!!!!
Start Time: Monday, December 8 at 6:00pm
End Time: Monday, December 8 at 9:00pm
Where: Hamilton Public Library (Central Branch); "Hamilton Room" - just off the main lobby

To see more details and RSVP, follow the link below:
http://www.facebook.com/n/?event.php&eid=60346206744

Thanks,
The Facebook Team

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

Globe article Nov 4th, 2008

From: http://www.theglobeandmail.com/servlet/story/RTGAM.20081104.wlautism04/BNStory/lifeFamily/home
MDs grapple with McCarthy Effect
Article TRALEE PEARCE
From Tuesday's Globe and Mail
November 4, 2008 at 9:02 AM EST
A few years ago, when Vancouver autism specialist Vikram Dua faced a parent's query about a trendy alternative therapy for a child, he wasn't the best listener.

"I used to rail against it or argue with parents," he recalls of the discussions about restricted diets or the use of supplements.

The result: He tended not to see those families again. "And it didn't help the kids very much."
Now, Dr. Dua is less combative. He explains that of the more than 1,000 treatments out there, one or two might, indeed, work. He just doesn't know which ones work and for which kids.

Enlarge Image
Jenny McCarthy and Jim Carrey have campaigned to have toxins removed from vaccines. Doctors have taken notice. (PAUL MORIGI/WIREIMAGE)

Instead, Dr. Dua, a child and adolescent psychiatrist at BC Children's Hospital, asks three questions. Is the treatment safe? Will it suck time and resources from others that may help more, such as behavioural or speech and language therapy? And, in general, does it fit the parents' world view?

If the answers suggest no potential for harm, Dr. Dua says, "Go forth and propagate. And if it works, come back and tell me about it."

Call it the Jenny McCarthy Effect. The former Playboy bunny has followed up her public crusade against the vaccines she believes caused her six-year-old son's autism with a new book that details how she "beat" that autism with a restricted diet, metal detoxification and vitamins.

Ms. McCarthy's crusades aren't going unnoticed; she's made various media appearances and landed a recent cover story in US Weekly.

In response to Ms. McCarthy and other advocates, doctors who treat children with autism say, their bedside manner has had to evolve.

Autism experts have seen first-hand that parents of autistic children are particularly vulnerable to the lure of upstart remedies. While diagnoses can now be made as young as 18 months of age, there is often a long wait for expensive behavioural therapies. This leaves parents anxious to search for others.

Autism, a developmental disability known to affect brain function, resulting in difficulties with communication and social interaction, and unusual patterns of behaviour, has attracted some romantic notions, Dr. Dua says. "There is an Awakenings phenomenon," he says, referring to the 1990 movie in which Robert De Niro's character is briefly stirred out of a catatonic state. . "If only there was some way to unlock this child, unlock the mystery. There's this search for a panacea, for the one thing that's going to fix it."

Traditional medicine hasn't been able to offer parents a great deal of hope. When parents say the studies on medication aren't that strong, "it's not an unreasonable point," he says.

Darlana Mancuso, a mother living in Burnaby , B.C., has seen an increased openness in the 2½ years she's been seeking help for her son, Christian.

Their first pediatrician didn't think anything was wrong with Christian, now 5, even though he was displaying major behavioural problems. She now has a "dream team" of occupational and speech therapists, doctors and pediatricians who are willing to discuss everything from testing a few dietary changes to pulling back on his vaccinations.

"I've noticed in the last little while doctors now, I don't know what it is, they're not talking their talk any more," she says. "Some of them are saying that the milk, the gluten and the sugar - removing them is helping out."

Wendy Roberts, a developmental pediatrician who specializes in autism at Toronto's Hospital for Sick Children and at Bloorview Kids Rehab, says she's not only entertaining queries about diet and supplements, she's been inspired by these parents to start her own research on the effects of supplements such as Omega-3s, which have been shown to have some positive effects on children with attention-deficit hyperactivity disorder.

In her practice, she warns parents that she's never seen diet make a difference in a child who is not among the 20 per cent of autistic children with stomach and digestion issues. And she says the link between these issues and brain function remains unknown.

If parents do want to forge ahead, she advises a very gradual approach, with a huge amount of documentation to chart any changes. And, like most doctors in the field, Dr. Roberts says, she will also emphasize continuing with behavioural therapy.

At the other end of the spectrum, some pediatricians are known for heartily endorsing a number of alternative therapies. Chatham, Ont., pediatrician Wendy Edwards, who has experienced some success with a gluten- and dairy-free diet for her 8-year-old son, says parents considering the diet seek her out or are referred by other doctors who are open to the idea. "Doctors are starting to realize this is becoming huge and you can't just brush it off any more."

But she finds herself managing the expectations of parents thrilled to have found an ally. She is careful to tell parents that their child may not improve on the diet. And like her more conservative peers, she is a firm opponent of chelation therapy (a metal-detoxification process) and oxygen chambers.

Dr. Edwards is especially careful with the word "cure." In Ms. McCarthy's new book Mother Warriors: A Nation of Parents Healing Autism Against All Odds, Ms. McCarthy writes that her son doubled his vocabulary within two weeks of starting the gluten- and dairy-free diet and has now recovered.

"God bless Jenny McCarthy for getting us on the map," Dr. Edwards says. "But she's a little extreme sometimes."
Dr. Roberts says she shuddered recently when a grandfather called to say his grandchild no longer had autism. "For the majority of kids, if they've had real, true autistic wiring, they may go through a period where they look great and that's wonderful," she says. "But when the next developmental challenge comes and the anxiety level goes up, or the environment changes and the symptoms come back, the parents are devastated."

If and when that happens, up to 70 per cent of autistic children can also show signs of a budding psychiatric illness. Parents may choose to intensify alternative treatments instead of trying medication that can work, says Dr. Dua, a member of Canada 's Mental Health Commission.

Dr. Roberts says that even when she disagrees with an extreme approach such as the potentially deadly chelation, she will try to find a way to reduce the chance of harm.

Having stumbled upon an unlicensed physician practising the treatment, she implores parents to check credentials. She urges parents to ask the doctor to monitor the blood for minerals such as potassium that can fall to dangerously low levels. Above all, she tries not to blame parents for their easy devotion to seemingly odd choices.

"I know they're desperate, and who knows what any of us would do in that situation."

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

Letter in the Globe Nov 5th, 2008:

From: Globeandmail.com
No room for guilt in autism
LAURA MACKINNON
November 5, 2008
Kingston, Ont. -- I am a family physician and mother of a moderately severe autistic 11-year-old (MDs Grapple With McCarthy Effect - Life, Nov. 4). A factor I don't see discussed is the guilt attached to therapy for autism.

Jenny McCarthy, on the cover of US Weekly, proclaiming she cured her son of autism leads vulnerable parents to the feeling that they, too, should be able to do this. The fact of the matter is that some kids get better (cured?) with therapy and some kids don't get completely better, despite any number of therapies.

Some families have been working for many more years than Ms. McCarthy, trying numerous therapies, and haven't had the results she has. And some don't have the resources, emotional, financial, intellectual or otherwise, to try every therapy.

If the therapy works, that is wonderful. If it doesn't, we need to accept the beauty and diversity autistic children and adults bring to the world.

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

A listmate shared from Nova Scotia , a group of articles and Hansard from the NS Legislature:

CJCH News (CTV Halifax) - Monday, November 3 2008 - 23:30 (Local) - Segment #3
CJCH
DAWN MORRIS SON SAYS HER SON BENEFITED FROM AN INTERVENTION PROGRAM AND SHE BELIEVES ALL CHILDREN WITH AUTISM SHOULD HAVE THE SAME OPPORTUNITY.

I AM SO GRATEFUL FOR THE WORK OF EIBI FOR MY FAMILY AND THE CHANGES I HAVE SEEN IN MAX. AND I WANT ALL KIDS WITH AUTISM AND ALL PARENTS TO EXPERIENCE THAT SAME HELP.

MIROISON WANTS THAT PROGRAM EXPANDED TO INCLUDE ALL CHILDREN WITH AUTISM. RIGHT NOW PRE-SCHOOL AGE KIDS ARE ELIGIBLE AND ARE SELECTED RANDOMLY. THE DIRECTOR FROM THE HEALTH DEPARTMENT SAYS IT IS ABOUT TRYING TO EN SURE ALL PARENTS HAVE EQUAL OPPORTUNITY TO ACCESS THE PROGRAM.

_______________________________
CJCH News (CTV Halifax) - Monday, November 3 2008 - 18:00 (Local) - Segment #3
CJCH
THE MOTHER OF AN AUTISTIC CHILD IS CALLING ON THE NOVA SCOTIA GOVERNMENT TO EXPAND THE INTERVENTION PROGRAM FOR AUTISM. SHE SAYS HER SON BENEFITED FROM TAKING PART AND SHE BELIEVES ALL CHILDREN WITH AUTISM SHOULD HAVE THE SAME OPPORTUNITY .

Reporter: MORRISON CAN'T BELIEVE HOW FAR MAX HAS COME IN THE LAST SEVEN YEARS. MAX HAS AUTISM.
THERE WAS A LOT OF MELTDOWNS A LOT OF FRUSTRATIONS.
NOW MAX IS SOCIALIZING AND GOING TO SCHOOL. AND SHE SAYS IT WOULD NOT HAVE HAPPENED WITHOUT THE EIBI PROGRAM FOR EARLY BEHAVIOURAL INTERVENTION. DESIGNED TO HELP WITH SOCIAL AND COMMUNICATION SKILLS. MAX WAS ENROLLED TWO YEARS AGO BEFORE HE STARTED SCHOOL.

I AM SO GRATEFUL FOR THE WORK OF EIBI FOR MY FAMILY AND THE CHANGES I HAVE SEEN IN MAX. AND I WANT ALL KIDS WITH AUTISM AND ALL PARENTS TO EXPERIENCE THAT SAME HELP.

MIROISON WANTS THAT PROGRAM EXPANDED TO INCLUDE ALL CHILDREN WITH AUTISM. RIGHT NOW PRE-SCHOOL AGE KIDS ARE ELIGIBLE AND ARE SELECTED RANDOMLY. THE DIRECTOR FROM THE HEALTH MEPARTDENT SAYS IT IS ABOUT TRYING TO EN SURE ALL PARENTS HAVE EQUAL OPPORTUNITY TO ACCESS THE PROGRAM. THERE IS A GREATER NEED AND IT IS HOPED THE PROGRAM SHOULD BEEX PANNED. DANA SHAW SAYS SHE BELIEVES THE PROVINCE IS BEING AS FAIR AS IT CAN BE IN THE SELECTION PROCESS BUT THE BEST WAY TO IMPROVE IT IS TO GIVE IT TO ANY CHILD WHO NEEDS IT.

PATRICIA MURRAY SAYS SHE HARD THE CONCERNS BEFORE BUT IT IS A KROFTLY PROGRAM. COSTING $4 MILLION A YEAR.
THERE ARE PATHOLOGISTS, OCCUPATIONAL THEY WEREIISTS; AND THOSE RESOURCES ARE GETTING TRICKIER TO ATTRACT AND RETAIN. THAT WOULD BE A CHALLENGE AS WELL.

THE PROGRAM STARTED IN 2005 AND 120 CHILDREN HAVE TAKEN PART. MURRAY SAYS SHE IS NOT SURE HOW MANY CHILDREN ARE WAITING TO GET IN BUT THEY ARE COLLECTING THAT INFORMATION NOW. DAWN MORRISON WANTS SOMETHING DONE IMMEDIATELY.

PARENTS ARE DESPERATE. AND NO WONDER. WE ALL WANT HELP FOR OUR CHILDREN. AND THERE IS SOMETHING OUTTHERE THAT CAN HELP SIGNIFICANTLY TAN SHOULD BE AVAILABLE MANY FOR ALL.

THE ISSUE WILL BE BROUGHT UP IN THE LEGISLATURE TOMORROW.

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

Nova Scotia Legislature
Hansard
Tuesday, November 4, 2008

MR. DAVID WILSON (Sackville-Cobequid): Thank you, Mr. Speaker. I bring
the attention of the members to the west gallery. We have Dawn
Morrison who joins us today. She's been a strong advocate for the
autism movement here in Nova Scotia , so if we could give her a warm
welcome. (Applause)

MR. SPEAKER: Certainly welcome to all those guests and all the other
people who are visiting us in the gallery today.
We'll commence now with the daily routine.

HEALTH: AUTISM PROG. - STATUS

MR. DAVID WILSON (Sackville-Cobequid): Mr. Speaker, my question is for
the Minister of Health this afternoon. Nova Scotia is seriously
lacking in services for children with autism. The government's
solution was the early intensive behavioural intervention and
treatment program or the EIBI. I would like to table a press release
from 2004 that states, "Details of the treatment roll-out plan are
still in development, but it is expected that it will take about three
years before the program will be fully operational within the nine
district health authorities and the IWK." So my question today is for
the Minister of Health. Can he explain why this program is still not
fully functional and operational, leaving Nova Scotian children
without services they need?

HON. CHRISTOPHER D'ENTREMONT: Mr. Speaker, I will be bringing in the
report, as the member opposite knows. After a three-year period the
department wishes to do a review of the EIBI Program and at that point
make a decision on the future of the program, whether it worked or
not, find out what the deficiencies are and try to put a cost to what
a full program would look like. I will be tabling that report in the
House - maybe later today, if not tomorrow - to bring to the House's
attention the successes of the EIBI Program.

MR. DAVID WILSON (Sackville-Cobequid): Mr. Speaker, the EIBI Program
is helping 27 children per year in Nova Scotia . According to the
Autism Society of Nova Scotia, there are approximately 1,790 children
here in our province with autism and pervasive developmental
disorders. That's a large number of children here in our province. So
I would like to ask the minister, can he explain why after four years
and over $12 million, you are only helping 27 of these 1,790 children
here in Nova Scotia ?

MR. D'ENTREMONT: Mr. Speaker, over the last number of years it has
been a learning process, not only for the department but for the
individuals who offer the service, as well as the families that are
receiving that service. We will have a report that will talk about the
importance of the program, the effectiveness of the program and
recommendations on the future of the program. Right now, there are 117
children who have gone through the program when it does complete in
the Spring and we would like to see more children go through that
program, as it has been very effective.

MR. DAVID WILSON (Sackville-Cobequid): Mr. Speaker, the EIBI program
has done a lot of good for the 27 children each year who are able to
access it, but what about the 1,763 other children that they are
refusing to help today in this province? I would like to ask the
minister, when are you going to help these 1,763 children by expanding
the program across this province?

MR. D'ENTREMONT: Mr. Speaker, the member opposite knows full well
that, of course, there are costs related to this program as well as
human resources related to this program. Finding the individuals that
can offer the program in the different districts, not only here at the
IWK but in the other nine districts across this province, is very
difficult. It would cost a fair sum to implement that program across
this province and it's one that needs to be considered during a full
budget process, it is one that the department will continue to work
with and work on in order to make sure that we help as many children
as is feasible, and can be done with the resources that are available
to Nova Scotians.

MR. SPEAKER: The honourable member for Kings West.

HEALTH: AUTISM FUNDING - COMMITMENT

MR. LEO GLAVINE: Mr. Speaker, my question is for the Minister of
Health. Last July the minister claimed that autism funding had grown
in leaps and bounds; one month later, the minister said that more
funding was needed. The fact of the matter is that no funding is
available to help families of autistic children, unless the child's
name is drawn out of a hat for funding. My question to the minister
is, will the minister clarify his commitment to funding and help all
children with autism?

HON. CHRISTOPHER D'ENTREMONT: Mr. Speaker, as my answers to the
previous question revolved around, we in the Department of Health, as
well as we as a government, would like to help all the children who
have autism. We speak to families just as much as the member opposite
about the challenges that they have with the children and trying to
find services for those children.

Again, this is a new program. I know over the last three years we have
spent well over $12 million to help the 117 children that have been
through the program. It would cost us, again, a fair sum in order to
expand that to the full gamut of the province - again, we are
receiving it in all parts of the province as well as here in metro. We
would have to find resources - not only monetary, but the individuals
who have to work so hard, one-on-one, with the families in order for
this program to succeed.

MR. GLAVINE: Mr. Speaker, the father of an autistic child, Jim Young,
recently wrote in The ChronicleHerald: Our family received no
financial support for treatment - never have. Yet in the last four
budgets, the government underspent in mental health programs by a
total of more than $1.5 million. My question to the minister is, why
isn't the government committing this money to help families like Jim
Young and their children coping with autism?

MR. D'ENTREMONT: Mr. Speaker, as the member opposite fully knows, as
we put a budget forward, as we try to start up new programs, from time
to time some of these programs become underspent because of just not
being able to find the people available to offer the services and
such. Every year we try to find a way to infuse money into new
programs and the EIBI program is not the only new program that people
are asking for, whether it be an expansion to the diabetes program,
whether it be a Pharmacare Program, whether it be another thing, so
there are competing priorities here. This report that I will be
tabling either today or tomorrow will show the successes, the
recommendations on how to bring this program forward, and to see more
children receive this service.

MR. GLAVINE: Mr. Speaker, in Monday's ChronicleHerald, the editorial
board stated the difference in outcomes for autistic children, unless
parents pay for the expensive treatments privately, can be tragic.

Mr. Speaker, in August the Deputy Minister had it right, calling on
government to commit more funding to mental health services. She
doesn't want a repeat of Nova Scotians spending 30 to 40 years in
provincial care. My question to the minister, with his own deputy
pushing for more funding for better mental health services, what is
the minister going to do to address the gaps in autism program
funding?

MR. D'ENTREMONT: Thank you very much, Mr. Speaker. I hope the member
opposite is not saying that the other programs under mental health are
not important. The deputy minister did have it right, because we do
need to spend more money on mental health but, with the other
competing priorities - and the member has these people who visit his
office as well, whether it be advocates for diabetes, whether it be
advocates for cancer care, whether it be advocates for whatever it is,
they're all asking for millions and millions of dollars to support
programs for the patients who they represent.
Mr. Speaker, again we will have a report that I believe is a good
report, that shows the success of the EIBI Program and one that will
have recommendations on how to enrich this program well into the
future.
________________________________________
RESOLUTION NO. 4623
MR. LEO GLAVINE: Mr. Speaker, I hereby give notice that on a future
day I shall move the adoption of the following resolution:

Whereas Kym Hume has been an educator for 31 years, presently serving
as the Annapolis Valley Regional School Board's Autism Consultant; and

Whereas since 1993 Ms. Hume has studied all aspects of autism spectrum
disorders and has educated parents, teachers, students and schools
across the province, bringing the STAR program to Nova Scotia; and

Whereas Ms. Hume is the driving force behind the opening of the Autism
Centre at Kingston School, which hosts all the autism programs for the
Annapolis Valley;

Therefore be it resolved that members of this House congratulate Kym
Hume for receiving the 2008 Sobeys Green Jacket Award from the
Provincial Autism Centre, in recognition of everything she has done to
promote autism awareness and education.

Mr. Speaker, I request waiver of notice.

MR. SPEAKER: There has been a request for waiver.
Is it agreed?
It is agreed.

Would all those in favour of the motion please say Aye. Contrary
minded, Nay.

The motion is carried.
__________________________________
RESOLUTION NO. 4654
By: Mr. Leo Glavine (Kings West)
I hereby give notice that on a future day I shall move the adoption of
the following resolution:

Whereas the Provincial Autism Centre was founded in 2002; and

Whereas this non-profit, community-based organization works towards a
world in which those who have autism spectrum disorders are able to
live their lives fully; and

Whereas the Provincial Autism Centre provides support and services to
those who are affected by autism spectrum disorders, through education
and programs;

Therefore be it resolved that members of this House recognize the
significant contribution the Provincial Autism Centre has made and
wish them continued success.
____________________________________
>From the Chronicle Herald (ChronicleHerald.ca)

Province urged to expand autism treatment program

By DAVID JACKSON Provincial Reporter
Wed. Nov 5, 2008.

Parents of autistic children and opposition critics are renewing their
demands for the province to expand an autism treatment program in
light of a report saying how well it works.
Dawn Morrison, whose seven-year-old son Max received a year of
treatment through the early intensive behavioural intervention
program, said Tuesday that it had a huge impact on him, helping him to
speak and be understood and giving him the ability to make friends.
"How can they make their way in the world without that?" Ms. Morrison
said at Province House.

She said it's frustrating to think other children who would benefit
from the treatment aren't getting it because the province doesn't fund
it for everyone.

She implored the government to cover the treatment for all eligible
children, as New Brunswick does.

Health Minister Chris d'Entremont said two challenges in expanding the
program are finding the extra $3 million a year to do it, plus the
people to deliver the specialized one-on-one treatment.

He said the province had been waiting for a report on its treatment
program.

The program, which started in 2005 and costs $4 million a year, has
been a big help for the children who participated, said a report
released last week.

Isabel Smith, a researcher based at the IWK Health Centre in Halifax ,
evaluated 27 children who completed a year of treatment and found all
of them had significantly improved communication skills, better
problem-solving skills and reduced behavioural problems.

Mr. d'Entremont said the department will use the report in its budget
planning for next year.
There have been 117 children in the program so far, but the Health
Department estimates there could be about 250 children at any given
time who could benefit from it. Children are picked at random for
treatment.

New Democrat health critic Dave Wilson and Liberal MLA Leo Glavine
grilled Mr. d'Entremont in question period about expanding the
program.
Mr. Glavine raised the case of a parent whose child was not picked for
treatment and who pointed out the government under-spent its mental
health budget by more than $1.5 million in the last four years.

"Why isn't the government committing this money to help families like
Jim Young and their children coping with autism?" Mr. Glavine said.
Mr. d'Entremont responded that there's lots of competition for money.

Autism affects normal brain development, leaving most people who have
the disorder with communication problems, difficulty with social
interactions and a tendency to repeat specific patterns of behaviour,
according to the Autism Canada Foundation.

The Nova Scotia program, delivered around the province, involves a
treatment team that may include autism support workers, speech
language pathologists, psychologists, occupational therapists and
social workers. The service is tailored to individual children.
( djackson@herald.ca)
________________________________

And another from the Halifax Chronicle Herald:

Treating autism

Tories need to step up

THE provincial government deserves much praise for putting $4 million per year into a two-year-old program that a new study shows greatly benefits preschoolers with autism.

Now Premier Rodney MacDonald’s Tories have a duty to do more.

It’s no exaggeration to say that children diagnosed with autism who receive early intensive behavioural intervention often can have their entire lives changed as a result. Instead of individuals whose ability to function remains significantly impaired, thus needing state-funded support over a lifetime, people with autism who get this treatment can often contribute greatly to society.

Given the vast difference such treatment can make, it is simply unconscionable a significant percentage of preschoolers diagnosed with autism won’t get the help they need, because their names didn’t come up in a lottery system. There are not enough spots in the program, offered at the IWK Health Centre, for all young children with autism in the province, so the lucky ones get in while the unlucky ones do not.

The difference in outcome, unless parents can pay for the expensive treatments privately, can be tragic.

Officials at the Department of Health say there are no plans to expand the program. That direction, indeed, has to come from government. Last summer, Health Minister Chris d’Entremont said that more funding for autism was needed, rising to perhaps $6 million to $8 million per year. It’s now time to make that commitment.

The results of the study released last week not only show the program significantly helps preschoolers with autism. The survey also revealed that the Nova Scotia-designed approach – which uses roughly half the hours per week compared to what the literature recommends – may point to a more resource-effective way to help those with autism. Critics are right to be skeptical until further follow-up studies are done, and the research is scientifically peer-reviewed. But there’s no question that if the results are borne out, there will be huge implications for autism treatment everywhere, since a lack of resources, such as finding trained staff, is a universal issue.

In finding more funding for this transformative program, government must also not rob other patients. Given the size of the total provincial budget, and glaring examples of waste in the past, surely $4 million more can be found to end a system that now randomly denies publicly funded, life-changing treatment to too many preschoolers with autism. No one should be satisfied with such a roulette-wheel approach, not when the stakes are so immense.

Many parents left out, of course, now turn to the private sector, using up their savings – if they have any – to do what any parent would.

The preschoolers’ treatment program is not the only answer, of course, to help the growing numbers with autism within our midst. Many school-age kids and young adults with autism also need services. Diagnosis still takes far too long. But the far-reaching potential of the IWK program should be clear to all. Government should do the right thing and expand its reach immediately.

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

Autism therapy works, but . . .
Province won"t expand program
By JOHN GILLIS Health Reporter
Thu. Oct 30 - 5:35 AM

A treatment program for Nova Scotia children with autism works well for those who can get it, an independent evaluation says.

But the provincial Health Department has no plans to expand the service to accommodate all those children who might benefit.

Isabel Smith, a researcher based at the IWK Health Centre, evaluated 27 children who completed a year of treatment as part of the early intensive behavioural intervention program.

She found all of them had significantly improved communication skills. They also had better problem-solving skills and reduced behavioural problems.

Autism affects normal brain development, leaving most people who have the disorder with communication problems, difficulty with social interactions and a tendency to repeat specific patterns of behaviour, according to the Autism Canada Foundation.

The Nova Scotia program, delivered around the province, involves a treatment team that may include autism support workers, speech language pathologists, psychologists, occupational therapists and social workers. The service is tailored to individual children.

Standard evaluations showed children gained more than a year’s worth of language during a year of treatment.

Tracey Avery, the mother of two children with autism, said the program would help her boys reach their full potential.

"This program has started my boys in a direction that has shaped the way that they learn in a school setting," she said in a news release. "I will never forget how Kyle began to speak after five long years of silence and how Brandon ’s challenging behaviour improved with continued support."

Ms. Smith found the program had positive effects for whole families and 95 per cent of parents surveyed said they would recommend it to other parents of autistic children.

But as it stands, children are only accepted into the program on a randomized basis as spots open, said Patricia Murray, the Health Department’s director of children’s services.

The Health Department does not have current provincial numbers. But, as of March, 117 children had participated in the program since it began in 2005.

Ms. Murray said when the program was being developed it was estimated that at any given time there would be 230 to 250 children in the province who could benefit from the service.

"We’re really pleased with the outcome," Ms. Murray said, "but, at this point in time, there isn’t a plan to expand it."

The program costs $4 million a year.

( jgillis@herald.ca)

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

and the comments posted :

mact wrote:
An effort for rapid expansion of this program should be undertaken. The reason I say this is, that the rate of autism seems to be rapidly increasing and the sooner a person can enter this program the more beneficial it will be to them.

selah wrote:
Four years ago we moved from NS to NB, and while I miss my home province, I am eternally grateful that we live here. I have a four year old son with autism, and it pains me to think of what his future would have been like if we had stayed in NS. Here in NB each child diagnosed with ASD receives 20 hrs a week of ABA therapy funded by our provincial government. My question is simple; if NB can afford this program, what the heck is wrong with the government in NS?? This is a serious problem, 1 in 125 children is now being diagnosed with autism. This isn't something that's going to just go away...these precious children need all the help they can get...RIGHT NOW!

Kontiki wrote:
I wonder if they use the same standard to allot "placement" to children with cystic fibrosis or leukemia? Shouldn't ALL children who need and can benefit from the program receive it? Autism Spectrum Diorder may not be life-threatening but it sure as hell is life-altering. It is long past due that such treatments are seen as healthcare and not an arbitrary social/educational service. So here we are folks, in the 21st century and some people are still putting a lesser value on the lives of children who have development disorders. FOR SHAME!!

Lainy wrote:
I have been doing this therapy on my own for the past 4 months as my daughter is on this wait list awaiting a spot. I am very happy there is a great program for autistic children in NS and I agree PRT is most likely the best, however the supply needs to meet the demand. If approximately 250 children require this therapy then how can we be happy with only a handful getting it. Autism symptoms can be greatly decreased if therapy is started at the earliest age possible. Being on a wait list for a possiblity of treatment is like the opposite of what needs to be done.PLans for explansion are necessary NOW!!! PLease listen to us parents who need help desperately. It is pretty bad when the department of health ( Patricia Murray ) agrees that moving to Alberta to get services is the solution for us families awaiting services.

ghamilto wrote:
The therapy works for only about 50% of affected children. Better than a kick in the pants, but it also points out that therapy is not the opnly thing missing. Adult support services tailored for autistics are needed desperately. There is a generation of aging parents that have no idea what is going to happen with their children when they (the parents) pass away. Worse yet - public education is even more desperately needed. For many adult autists the real problem is how they are treated by the rest of society - a society that does not understand them. A society creeped out by them, even. (for example, many people think that autists are violent and avoid them like plague). There is often no attempt by society at large to even try to understand. If you're on spectrum yourself, or have family members that are, then you know what I am talking about. We could benefit autists as much as ABA simply with more understanding. Google "the uncanny valley" to get a feel for why this happens (and no - autists are not robots, but the analogy still works - autists look completely human, but they don't quite act it, in neurotypical eyes). Don't get me wrong - the 50% that can be helped should be helped. We just cannot forget the other 50%.

apanda wrote:
What about autistic adults? While it is understood that children need special care to help in development, adults with autism who have been denied these services continue to be somewhat neglected.

JPY wrote:
First the province has to sued, petitioned and forced into funding a well intended but short- sighted 'program". Now when positive results are forthcoming there is no movement on expanding the treatment. You would think that publicly elected officials would gravitate to a winner, not shy away from it. This is dangling evidence of an opportunity for a productive life in front of terrified parents and tearing it up in front of them. Both the number of hours provided as well as the duration of treatment are well below the science based standard. I am glad that the Department of Health is "really pleased" with the outcomes for the 117 children lucky enough to be selected. There are thousands of persons in Nova Scotia dealing with autism but since the Department of Health "does not have current provincial numbers" I guess they are in no rush to provide medical treatment for the vast majority of individuals and families dealing with autism. I recall the Minister of Health recently stated in this paper that the program has grown in "leaps and bounds". What exactly was he talking about. Another meaningless platitude designed to deflect from the travesty being perpetuated in this province.

ItsJustmyOpinion wrote:
Its such a shame that our children, the future of both this province and this country, cannot get access to the programs they need to thrive. The Government of Nova Scotia thinks nothing of spending millions upon millions of dollars on a go-nowhere bid for the Commonweath Games, or a frivolous, dangerous, purchase of pint-sized ATVs, yet when it comes to the health of these kids they won't pony up anywhere near that same amount of cash. Rodney MacDonald is too far up the rear ends of big-named developers to care about the real future of our province,our kids.

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

From: Metro.ca

Canucks charity helps families battling autism
KRISTEN THOMPSON/METRO VANCOUVER
November 03, 2008 05:10

More than a decade ago, Clara and Paolo Aquilini, the owners of the Vancouver Canucks, learned their son had autism.

It was the frustration of watching him struggle to join or be told he couldn’t participate in normal activities that spurred them to create the newly launched Canucks Autism Network Society (CAN).

The mission of the charity is to provide year-round recreational and sporting activities, advocacy and resources for people with autism and their families.

“The Canucks Autism Network will play a key role in improving the quality of life for families living with autism in B.C,” said Chris Zimmerman, president and CEO of Canucks Sports And Entertainment.

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

From Newsweek:

from Newsweek:

HEALTH
Stomping Through A Medical Minefield

The author of a new book about autism says exactly what he thinks about vaccines and other hot topics.

By Claudia Kalb | NEWSWEEK

Published Oct 25, 2008

From the magazine issue dated Nov 3, 2008

Paul Offit—salt-and-pepper hair, wire-rimmed glasses, Phillies fan—hardly seems like the kind of guy who'd receive a death threat. He's a father who likes to hang out with his teenage kids, a doctor who wears khakis until they're frayed. But Offit, chief of infectious diseases at Children's Hospital of Philadelphia and the nation's most outspoken advocate for childhood immunizations, is at the center of a white-hot medical controversy. He believes passionately in the safety of vaccines; his enemies, many of them parents who blame these shots for their children's autism, do not. Offit says he's been harassed in public, and received threatening letters, e-mails and phone calls. One August morning, his wife, Bonnie, sent him a message before he spoke at a New York press conference promoting vaccination. Worried that protesters rallying outside the event might turn violent, she warned: "Be careful."

Immunologists were hardly the target of such wrath when Offit, 57, entered the field almost 30 years ago. But today, frustrations and fears about a mysterious brain disorder that strikes up to one in 150 kids have given rise to the most angry and divisive debate in medicine: do vaccines trigger autism? Offit, a vaccine inventor, says "no." His critics, who vilify him routinely on autism Web sites, say the question is still very much open. They think he's arrogant and a mouthpiece for Big Pharma. One recent post: "Offit should be prosecuted for crimes against our children." After the death threat—a man wrote, "I will hang you by your neck until you are dead"—an armed guard followed Offit to lunch during meetings at the Centers for Disease Control and Prevention.

But the scientist refuses to back down. In his new book, "Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure," Offit takes on his critics full-force, challenging them to prove the science wrong. Fearing for his safety, he isn't doing a book tour. "People think of me as this wild-eyed maniac," Offit says. "If I sat down with them for 10 minutes, they'd see that my motivation is the same as theirs. You want what's best for kids." Asked how he ranks the intensity of the vitriol aimed at him, Offit says simply, "Abortion, doctors who perform abortions."

Nobody's firebombing pediatricians' offices, and there's no moral dilemma here about when life begins. But the overarching question—what happened to my baby?—is still impossible to answer, and the anger is real and it's deep. Some parents of children with autism tell stories with an eerily similar start: an infant who was happy and healthy until she got her shots. Then, suddenly, she lost eye contact and language. Parents' dreams for their babies are buried in sadness, their pockets are emptied to pay for therapies, their worries about their children's future haunt them even as they're trying to get through the screaming, splattered minutes of the day.

Parents of children with autism are a diverse group. Many don't believe vaccines are to blame; they'd like to see attention shifted to better services for their children. But those who think vaccines are the culprit will continue to fight a government and pharmaceutical industry they do not trust. Such concerns have spread beyond the autism community. Choice has become a critical issue; a few weeks ago, parents rallied outside the New Jersey State House, protesting the state's requirement that the flu vaccine be given to children attending day care or preschool. (The parents support legislation that would let them opt out.) A recent CDC survey found that less than 1 percent of American toddlers received no vaccines at all by 19 to 35 months. But some parents are skipping certain shots or staggering the government's recommended schedule, a move that scientists worry could lead to increased outbreaks. This summer, the CDC reported 131 cases of measles, the largest number since 1996. Many of those kids' parents, says a CDC spokesman, were concerned about vaccine safety.

Offit's book is a critical assessment of the theories that have swirled around autism, the therapies marketed to fix it, and the people—the "false prophets"—who he says have taken emotional and financial advantage of parents seeking a cure. Few scientists are willing to touch this third rail of science publicly; Offit grabs it with two hands. He documents "false promises," like secretin, a hormone derived from pigs that was said to improve symptoms. He dissects hypotheses that gave rise to fears—first, that the measles-mumps-rubella vaccine causes autism and later, that thimerosal, a mercury-containing preservative, is the culprit—then lays out the evidence against them, including more than a dozen studies showing no link. He lambastes the lawyers, doctors, media, politicians and celebrities who he says have fueled the anxiety. The notion that vaccines cause autism, he writes, has "been clearly disproved."

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

From Simcoe County AO :

Gravenhurst Boston Pizza and Autism Ontario Simcoe County Chapter invite you to a very special evening.

Boston Pizza in Gravenhurst is hosting an autism awareness night on Dec 7th. 10% of the food sales from 12 to 8pm will be donated to our Chapter! There will also be coffee, dessert and a silent auction.

Please see the attached flyer for details about this wonderful evening and be sure to share it with your friends and family! Come enjoy a great meal in a beautiful setting for a good cause!

Are you an artist or do you know an artist who has an Autism Spectrum Disorder and would like to donate a piece of art to this silent auction? If so, please contact Yvonne at y_grin@hotmail.com

Thanks, we look forward to seeing you there,

Amanda McNulty, President

Autism Ontario - Simcoe County Chapter

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

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

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

From the York Region papers:

Sunrise show helps autistic artists

Newmarket

November 03, 2008 12:58 PM

By: Amanda Persico, Staff Writer

With coloured pencils, Aaron Carr, 21, draws a ship that stands against the intense shade of ocean blue.

The Newmarket artist is one of many supported by Kerry’s Place Autism Services and his art work is featured in the Art of Living show, hosted by Kerry’s Place and Community Living.

Proceeds from the sale will go directly to the artist, like Mr. Carr, for art supplies.

Art enriches everyone’s life and is a therapeutic form of expression that helps people, who can’t communicate effectively, show others how they are feeling, according to Ryan Glasgow, an autism support associate with Kerry’s Place.

“Art is expression, what you are feeling at this moment,” he said. “Think Picasso, you don’t have to get the message to understand the feeling.”

In its fourth year, Art of Living gives individuals with autism an opportunity to showcase their passion, Kerry’s Place autism associate Sara Jacob said.

“We see on a day-to-day basis how capable and talented these individuals are,” she said. The community can see that, too. Everyone relates to art and takes something from it.”

The art sale features about 30 artists from Kerry’s Place and Community Living. Art from members of Art Factor-e, an social art group with Kerry’s Place, will also be displayed.

This year, the number of programs for autistic individuals has doubled. Kerry’s Place offers respite programs, such as rock climbing, art, craft, movie-making, learning how to take public transit, news and media, sports and music.

“Art is a visual example of what these individuals are capable of,” Ms Jacob said. “This is expression in a different medium. With the show, people can start to understand what autism is about.”

Art of Living:

What: Art sale featuring art done by individuals supported by Kerry’s Place and Community Living

When: Until Nov. 7, 5 to 9 p.m. Meet the artists Thursday

Where: Sunrise of Aurora, 3 Golf Links Dr., Aurora

For more information, call Kerry’s Place at 905-713-6808, ext. 312

Google alert

http://www.midnorthmonitor.com/ArticleDisplay.aspx?e=1282033
Autism: Benchmarks are customary
Posted By Kiri Nesbitt
Posted 2 days ago

In regards to recent letters dealing with autism in the Mid-North Monitor, I would like to add my own comments.

It is customary to establish benchmarks when a new program is introduced, not after it has been running for 10 years.

We should therefore ask why the provincial government has waited so long before introducing “standards” for the funding of its autism program.

The answer is that the government wishes to further reduce the number of children who are eligible for publicly funded treatment. The benchmarks are designed to cull as many children from the autism program as possible.

According to Provincial Government Statistics approximately 10,000 children have been identified as autistic, yet only 2110 (21%) of them are benefiting from the government’s program. Imagine what would happen if only 21% of all children in Ontario went to school, and those that did would have to achieve 80% in every subject or else be expelled.

This is exactly the situation that those fortunate enough to get into the autism program face.

As for the rest -- well, expect to see them on the streets in a decade or so when their bankrupt parents are too old to care for them.

Kiri Nesbitt

Toronto

From a listmate

http://www.theglobeandmail.com/servlet/story/RTGAM.20081104.wlautism04/BNStory/lifeFamily/home

MDs grapple with McCarthy Effect
Article TRALEE PEARCE

From Tuesday's Globe and Mail

November 4, 2008 at 9:02 AM EST

A few years ago, when Vancouver autism specialist Vikram Dua faced a parent's query about a trendy alternative therapy for a child, he wasn't the best listener.

"I used to rail against it or argue with parents," he recalls of the discussions about restricted diets or the use of supplements.

The result: He tended not to see those families again. "And it didn't help the kids very much."

Now, Dr. Dua is less combative. He explains that of the more than 1,000 treatments out there, one or two might, indeed, work. He just doesn't know which ones work and for which kids.

Enlarge Image
Jenny McCarthy and Jim Carrey have campaigned to have toxins removed from vaccines. Doctors have taken notice. (PAUL MORIGI/WIREIMAGE)

Instead, Dr. Dua, a child and adolescent psychiatrist at BC Children's Hospital, asks three questions. Is the treatment safe? Will it suck time and resources from others that may help more, such as behavioural or speech and language therapy? And, in general, does it fit the parents' world view?

If the answers suggest no potential for harm, Dr. Dua says, "Go forth and propagate. And if it works, come back and tell me about it."

Call it the Jenny McCarthy Effect. The former Playboy bunny has followed up her public crusade against the vaccines she believes caused her six-year-old son's autism with a new book that details how she "beat" that autism with a restricted diet, metal detoxification and vitamins.

Ms. McCarthy's crusades aren't going unnoticed; she's made various media appearances and landed a recent cover story in US Weekly.

In response to Ms. McCarthy and other advocates, doctors who treat children with autism say, their bedside manner has had to evolve.

Autism experts have seen first-hand that parents of autistic children are particularly vulnerable to the lure of upstart remedies. While diagnoses can now be made as young as 18 months of age, there is often a long wait for expensive behavioural therapies. This leaves parents anxious to search for others.

Autism, a developmental disability known to affect brain function, resulting in difficulties with communication and social interaction, and unusual patterns of behaviour, has attracted some romantic notions, Dr. Dua says. "There is an Awakenings phenomenon," he says, referring to the 1990 movie in which Robert De Niro's character is briefly stirred out of a catatonic state. . "If only there was some way to unlock this child, unlock the mystery. There's this search for a panacea, for the one thing that's going to fix it."

Traditional medicine hasn't been able to offer parents a great deal of hope. When parents say the studies on medication aren't that strong, "it's not an unreasonable point," he says.

Darlana Mancuso, a mother living in Burnaby , B.C., has seen an increased openness in the 2½ years she's been seeking help for her son, Christian.

Their first pediatrician didn't think anything was wrong with Christian, now 5, even though he was displaying major behavioural problems. She now has a "dream team" of occupational and speech therapists, doctors and pediatricians who are willing to discuss everything from testing a few dietary changes to pulling back on his vaccinations.

"I've noticed in the last little while doctors now, I don't know what it is, they're not talking their talk any more," she says. "Some of them are saying that the milk, the gluten and the sugar - removing them is helping out."

Wendy Roberts, a developmental pediatrician who specializes in autism at Toronto's Hospital for Sick Children and at Bloorview Kids Rehab, says she's not only entertaining queries about diet and supplements, she's been inspired by these parents to start her own research on the effects of supplements such as Omega-3s, which have been shown to have some positive effects on children with attention-deficit hyperactivity disorder.

In her practice, she warns parents that she's never seen diet make a difference in a child who is not among the 20 per cent of autistic children with stomach and digestion issues. And she says the link between these issues and brain function remains unknown.

If parents do want to forge ahead, she advises a very gradual approach, with a huge amount of documentation to chart any changes. And, like most doctors in the field, Dr. Roberts says, she will also emphasize continuing with behavioural therapy.

At the other end of the spectrum, some pediatricians are known for heartily endorsing a number of alternative therapies. Chatham, Ont., pediatrician Wendy Edwards, who has experienced some success with a gluten- and dairy-free diet for her 8-year-old son, says parents considering the diet seek her out or are referred by other doctors who are open to the idea. "Doctors are starting to realize this is becoming huge and you can't just brush it off any more."

But she finds herself managing the expectations of parents thrilled to have found an ally. She is careful to tell parents that their child may not improve on the diet. And like her more conservative peers, she is a firm opponent of chelation therapy (a metal-detoxification process) and oxygen chambers.

Dr. Edwards is especially careful with the word "cure." In Ms. McCarthy's new book Mother Warriors: A Nation of Parents Healing Autism Against All Odds, Ms. McCarthy writes that her son doubled his vocabulary within two weeks of starting the gluten- and dairy-free diet and has now recovered.

"God bless Jenny McCarthy for getting us on the map," Dr. Edwards says. "But she's a little extreme sometimes."

Dr. Roberts says she shuddered recently when a grandfather called to say his grandchild no longer had autism. "For the majority of kids, if they've had real, true autistic wiring, they may go through a period where they look great and that's wonderful," she says. "But when the next developmental challenge comes and the anxiety level goes up, or the environment changes and the symptoms come back, the parents are devastated."

If and when that happens, up to 70 per cent of autistic children can also show signs of a budding psychiatric illness. Parents may choose to intensify alternative treatments instead of trying medication that can work, says Dr. Dua, a member of Canada 's Mental Health Commission.

Dr. Roberts says that even when she disagrees with an extreme approach such as the potentially deadly chelation, she will try to find a way to reduce the chance of harm.

Having stumbled upon an unlicensed physician practising the treatment, she implores parents to check credentials. She urges parents to ask the doctor to monitor the blood for minerals such as potassium that can fall to dangerously low levels. Above all, she tries not to blame parents for their easy devotion to seemingly odd choices.

"I know they're desperate, and who knows what any of us would do in that situation."

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

From: http://thechronicleherald.ca/Editorial/1088192.html

The Chronicle Herald (Halifax)
EDITORIAL

Treating autism
Tories need to step up
Mon. Nov 3 - 4:46 AM

THE provincial government deserves much praise for putting $4 million
per year into a two-year-old program that a new study shows greatly
benefits preschoolers with autism.

Now Premier Rodney MacDonald's Tories have a duty to do more.

It's no exaggeration to say that children diagnosed with autism who
receive early intensive behavioural intervention often can have their
entire lives changed as a result. Instead of individuals whose ability
to function remains significantly impaired, thus needing state-funded
support over a lifetime, people with autism who get this treatment can
often contribute greatly to society.

Given the vast difference such treatment can make, it is simply
unconscionable a significant percentage of preschoolers diagnosed with
autism won't get the help they need, because their names didn't come
up in a lottery system. There are not enough spots in the program,
offered at the IWK Health Centre, for all young children with autism
in the province, so the lucky ones get in while the unlucky ones do
not.

The difference in outcome, unless parents can pay for the expensive
treatments privately, can be tragic.

Officials at the Department of Health say there are no plans to expand
the program. That direction, indeed, has to come from government. Last
summer, Health Minister Chris d'Entremont said that more funding for
autism was needed, rising to perhaps $6 million to $8 million per
year. It's now time to make that commitment.

The results of the study released last week not only show the program
significantly helps preschoolers with autism. The survey also revealed
that the Nova Scotia-designed approach - which uses roughly half the
hours per week compared to what the literature recommends - may point
to a more resource-effective way to help those with autism. Critics
are right to be skeptical until further follow-up studies are done,
and the research is scientifically peer-reviewed. But there's no
question that if the results are borne out, there will be huge
implications for autism treatment everywhere, since a lack of
resources, such as finding trained staff, is a universal issue.

In finding more funding for this transformative program, government
must also not rob other patients. Given the size of the total
provincial budget, and glaring examples of waste in the past, surely
$4 million more can be found to end a system that now randomly denies
publicly funded, life-changing treatment to too many preschoolers with
autism. No one should be satisfied with such a roulette-wheel
approach, not when the stakes are so immense.

Many parents left out, of course, now turn to the private sector,
using up their savings - if they have any - to do what any parent
would.

The preschoolers' treatment program is not the only answer, of course,
to help the growing numbers with autism within our midst. Many
school-age kids and young adults with autism also need services.
Diagnosis still takes far too long. But the far-reaching potential of
the IWK program should be clear to all. Government should do the right
thing and expand its reach immediately.

From a listmate

CJCH News (CTV Halifax) - Monday, November 3 2008 - 23:30 (Local) - Segment #3
CJCH
DAWN MORRIS SON SAYS HER SON BENEFITED FROM AN INTERVENTION PROGRAM AND SHE BELIEVES ALL CHILDREN WITH AUTISM SHOULD HAVE THE SAME OPPORTUNITY.

I AM SO GRATEFUL FOR THE WORK OF EIBI FOR MY FAMILY AND THE CHANGES I HAVE SEEN IN MAX. AND I WANT ALL KIDS WITH AUTISM AND ALL PARENTS TO EXPERIENCE THAT SAME HELP.

MIROISON WANTS THAT PROGRAM EXPANDED TO INCLUDE ALL CHILDREN WITH AUTISM. RIGHT NOW PRE-SCHOOL AGE KIDS ARE ELIGIBLE AND ARE SELECTED RANDOMLY. THE DIRECTOR FROM THE HEALTH DEPARTMENT SAYS IT IS ABOUT TRYING TO EN SURE ALL PARENTS HAVE EQUAL OPPORTUNITY TO ACCESS THE PROGRAM.

_______________________________
CJCH News (CTV Halifax) - Monday, November 3 2008 - 18:00 (Local) - Segment #3
CJCH
THE MOTHER OF AN AUTISTIC CHILD IS CALLING ON THE NOVA SCOTIA GOVERNMENT TO EXPAND THE INTERVENTION PROGRAM FOR AUTISM. SHE SAYS HER SON BENEFITED FROM TAKING PART AND SHE BELIEVES ALL CHILDREN WITH AUTISM SHOULD HAVE THE SAME OPPORTUNITY .

Reporter: MORRISON CAN'T BELIEVE HOW FAR MAX HAS COME IN THE LAST SEVEN YEARS. MAX HAS AUTISM.
THERE WAS A LOT OF MELTDOWNS A LOT OF FRUSTRATIONS.
NOW MAX IS SOCIALIZING AND GOING TO SCHOOL. AND SHE SAYS IT WOULD NOT HAVE HAPPENED WITHOUT THE EIBI PROGRAM FOR EARLY BEHAVIOURAL INTERVENTION. DESIGNED TO HELP WITH SOCIAL AND COMMUNICATION SKILLS. MAX WAS ENROLLED TWO YEARS AGO BEFORE HE STARTED SCHOOL.

I AM SO GRATEFUL FOR THE WORK OF EIBI FOR MY FAMILY AND THE CHANGES I HAVE SEEN IN MAX. AND I WANT ALL KIDS WITH AUTISM AND ALL PARENTS TO EXPERIENCE THAT SAME HELP.

MIROISON WANTS THAT PROGRAM EXPANDED TO INCLUDE ALL CHILDREN WITH AUTISM. RIGHT NOW PRE-SCHOOL AGE KIDS ARE ELIGIBLE AND ARE SELECTED RANDOMLY. THE DIRECTOR FROM THE HEALTH MEPARTDENT SAYS IT IS ABOUT TRYING TO EN SURE ALL PARENTS HAVE EQUAL OPPORTUNITY TO ACCESS THE PROGRAM. THERE IS A GREATER NEED AND IT IS HOPED THE PROGRAM SHOULD BEEX PANNED. DANA SHAW SAYS SHE BELIEVES THE PROVINCE IS BEING AS FAIR AS IT CAN BE IN THE SELECTION PROCESS BUT THE BEST WAY TO IMPROVE IT IS TO GIVE IT TO ANY CHILD WHO NEEDS IT.

PATRICIA MURRAY SAYS SHE HARD THE CONCERNS BEFORE BUT IT IS A KROFTLY PROGRAM. COSTING $4 MILLION A YEAR.
THERE ARE PATHOLOGISTS, OCCUPATIONAL THEY WEREIISTS; AND THOSE RESOURCES ARE GETTING TRICKIER TO ATTRACT AND RETAIN. THAT WOULD BE A CHALLENGE AS WELL.

THE PROGRAM STARTED IN 2005 AND 120 CHILDREN HAVE TAKEN PART. MURRAY SAYS SHE IS NOT SURE HOW MANY CHILDREN ARE WAITING TO GET IN BUT THEY ARE COLLECTING THAT INFORMATION NOW. DAWN MORRISON WANTS SOMETHING DONE IMMEDIATELY.

PARENTS ARE DESPERATE. AND NO WONDER. WE ALL WANT HELP FOR OUR CHILDREN. AND THERE IS SOMETHING OUTTHERE THAT CAN HELP SIGNIFICANTLY TAN SHOULD BE AVAILABLE MANY FOR ALL.

THE ISSUE WILL BE BROUGHT UP IN THE LEGISLATURE TOMORROW.
__________________________
Helping Young Researchers by Participating in ASD Research

Monday, November 3, 2008 1:21 PM

From:

"ASD-CARC Autism Research Program"

To:

undisclosed-recipients

Good Afternoon,

In 2003 the Autism Spectrum Disorders - Canadian-American Research Consortium (ASD-CARC) started a strategic training program (www.AutismTraining.ca) to provide an opportunity for students and professionals to develop their technical and research skills, improve their communication skills, and expand their knowledge about ASDs. The ASD-CARC Research Registry allows trainees in the program to bring their research projects to more families by announcing it to families who have joined our Research Registry. Last year a trainee in our program posted a questionnaire at our website hoping to recruit "some" families to complete her questionnaire. She was thrilled to have an overwhelming response, with twice as many families responding than she expected, making her study far more robust. To read about her findings, please go to this link:
http://asdcarc.com/index.php/publisher/articleview/frmArticleID/333/staticId/442/

We are now announcing three new studies by trainees in our program. These are from trainees from Queen's University (Tess Clifford with Dr. Patricia Minnes in the Department of Psychology and Tiziana Bontempo with Dr. Rosemary Lysaght in the School of Rehabilitation Sciences ) and York University (Carly McMorris with Dr. James Bebko in the Department of Psychology). Their studies range from looking at the complicated process of diagnosing an individual with ASD, to experiences in parent support groups, to sensory experiences and work place experiences for adults with ASD. We hope that you will read more about their studies (below) and consider participating and perhaps even passing this email along to others who might be interested.

Examining the Diagnostic History of Individuals with Autism Spectrum Disorders (Carly McMorris/James Bebko)
Families of children with a diagnosis of ASD often report frustration with the process of obtaining a diagnosis for their child. It often involves multiple visits to a variety of different professionals with various diagnoses being given, including ADHD, Conduct Disorder, as well as possible medications and changes to the diagnosis over time. This study is intended to document these complicated histories which can be frustrating to families. The primary goal of this study is to better understand families’ experiences, which may help to delineate appropriate diagnostic procedures for professionals. Participation involves completion of an online questionnaire, which will take approximately 10-15 minutes. To learn more, or to participate, please go to this link: http://asdcarc.com/index.php/publisher/articleview/frmArticleID/332/staticId/442/

Support Groups for Parents of Children with ASDs: Predictors of Involvement (Tess Clifford/Patricia Minnes)
We want to learn about the experiences of parents of children with ASDs. We are especially interested in your experiences with parent support groups, and would like to learn how best to support all families of children with ASDs. In addition to feedback from you, if you are interested, you may be invited to participate in an online parent support group. There are 5 questionnaires that will take about 1 hour to complete; however, they can be completed at different times over a one month period. To learn more, or to participate, please go to this link: http://asdcarc.com/index.php/publisher/articleview/frmArticleID/329/staticId/442/

Sensory Processing Patterns in Adults with ASDs

(Tiziana Bontempo/Rosemary Lysaght)
We are interested in exploring the role of different sensory processing patterns in adults with ASD. Phase 1 involves the completion of a questionnaire on the general sensory experiences of adults with ASDs. One of the questions you will be asked is whether you participate in paid employment. Individuals who participate in paid employment may be invited to participate in Phase 2 of this study, which involves an interview to talk about your work. To learn more, or to participate, please go to this link: http://asdcarc.com/index.php/publisher/articleview/frmArticleID/331/staticId/442/

Sincerely
Jeanette J.A. Holden, PhD, FCCMG
Professor, Autism Research Program

Dept. Psychiatry and Physiology, Queen's University, Kingston, Ontario
Program Director, ASD-CARC (www.AutismResearch.com)
Program Co-Director, ASPIRE Training Program (www.AutismTraining.ca)
Program Director, AutismConnects (www.AutismConnects.com
---

From: Metro.ca

Canucks charity helps families battling autism
KRISTEN THOMPSON/METRO VANCOUVER
November 03, 2008 05:10

More than a decade ago, Clara and Paolo Aquilini, the owners of the Vancouver Canucks, learned their son had autism.

It was the frustration of watching him struggle to join or be told he couldn’t participate in normal activities that spurred them to create the newly launched Canucks Autism Network Society (CAN).

The mission of the charity is to provide year-round recreational and sporting activities, advocacy and resources for people with autism and their families.

“The Canucks Autism Network will play a key role in improving the quality of life for families living with autism in B.C,” said Chris Zimmerman, president and CEO of Canucks Sports And Entertainment.

From taline

Carly's breakthrough sends a clear message

November 03, 2008

Re:Compelling plea to address isolation, Nov. 1

I have a 13-year-old daughter with autism whose communication "breakthrough" – really the result of many years of intensive and consistent therapy – was widely reported earlier this year across all of North America and beyond. Carly's message was clear to other kids and remarkably compelling to parents. First, assume your child understands everything you are saying in front of him/her and don't give up on them.

When Carly was much younger, her prognosis was very weak. Today, she is asking to go to medical school. Telling a child at age 6 or 7 that they can no longer benefit from intensive behavioural intervention (IBI) therapy is tantamount to malpractice.

The other huge piece of learning that came from Carly is that she tells us she feels lonely. She wants friends. She sees her sister having sleepovers and she wants them too. She recently told one of her therapists that she wants to "feel normal" and she is angry that all her "friends" are twice her age and have to get paid to be there with her.

She has recently found some peers who can communicate like she does but they live in California and have reaped the benefit of that state's autism legislation. The issue with Carly and others like her are the interfering behaviours that make these kinds of relationships so challenging to develop. That has nothing to do with the desires to have typical relationships – the kind we all treasure. I think we are starting to learn that is one of the biggest myths of autism.

Arthur Fleischmann, Toronto

Thank you to Martine Stonehouse, an adult living with autism, for stepping forward and speaking out for the children with autism who cannot express their feelings and desires publicly for themselves. My son has cried to me that he wishes I could make his autism go away. I explain to him that his autism will never go away, but that is why he has special people working with him to help him learn how to cope with the challenges autism brings. If my son could tell Martine Stonehouse how grateful he is to you, I know he certainly would.

Nancy Morrison, Bradford

While autism isolates our children from the rest of the world around them, our government and school boards assist in the process by not allowing our children to receive therapy within a public education environment. The additional supports referred to by Children and Youth Services Deb Matthews once again fail to take into consideration what our children need in order to participate in our school system. Families continue to encounter barriers to access IBI therapy in the schools while these same barriers are non-existent in the U.S.

Ontario has already fallen decades behind in the programs and services offered to children and adults on the autism spectrum. How much more valuable time do we have to lose?

Taline Sagharian, Richmond Hill

I understand and agree with parent concerns regarding the IBI Benchmark Report. There is a sense of urgency to get children off IBI. However, there is little in place to support their transition to help maintain and generalize their newly acquired skills. I have two boys with ASD; only after over a year and a half of waiting did one son receive IBI.

My son is in a regular Grade 1 class as deemed appropriate by his IBI program psychologist. His kindergarten teacher also stated that Daniel would initially need to have full support to succeed in his Grade 1 class. Although, the Toronto District School Board superintendent acknowledged that my son needs support, he stated, "We cannot give it to him." He could not tell me who to speak to or where to go for help concerning my son. Daniel's teacher states he is having the most difficulty in the afternoon, when there is no assistance for him. Daniel is one of at least five children with higher needs in this classroom, yet there continues to be inadequate support here.

Daniel cannot generalize his skills nor be mainstreamed into a regular class without assistance. We hope that Daniel will not always need extra help, but we need to do the groundwork now. He has not only been put in a "sink or swim" situation, but his needs are blatantly being ignored.

He was put in this class with no assistance in the first two weeks of school. Thereafter, he was given all of an hour of in-class help per day. Although Daniel is supervised at recess, he was overlooked for almost two full months, being left outside alone at times after the lunch time bell to return to class. This type of incident, which clearly puts my son at risk, has happened repeatedly.

Alia Brum, Toronto

Is our society so micro-focused on gas price fluctuations, stock market ebbs and flows and electoral outcomes that we let dangle by the wayside our future generations to come?

Children of all abilities need support – be it a breakfast program, English as a second language or Applied Bahvioural Analysis (ABA) therapy. We simply must invest in them now. The isolation of autism is all encompassing, not only to the person receiving this diagnosis, but their families and indeed the community too.

Inclusion and trained staff in all classrooms is a step forward. Adequate funding to eliminate the waiting list for ABA therapy for all children is the highest priority our leaders and ministers must contend with.

A society filled with compassion and kindness and a community ready to offer meaningful work will all mesh together to remove that isolation that truly exists, quietly, compellingly.

Lillian Wagman, Toronto

FROM NANCY ’S LIST

(I am sending this message to this one group of addresses for a second time, as some from this group was returned to me undelivered and due to the importance of the first article, I wanted to retry to get it through to all of you. Sorry for any duplication. Nancy )

An excellent article by Helen Henderson in the Toronto Star. Thank you to the adult community who has played a big role in this article to help our children. Also, if so many letters were not sent to the Star regarding their editorial last week, the benchmarks may not have been given attention once again. This proves how our letters to the editors promote further coverage on our issues. Please, keep those letters going in, they are making a huge impact!!!!!!!!!!!!!!!! Remember to include your name, full address and telephone number, the name of the article and the date of print.

Log in to the article online to post comments: http://www.thestar.com/living/article/526268

Write a letter to the editor: lettertoed@thestar.ca

Compelling plea to address isolation TheStar.com - living - Compelling plea to address isolation

November 01, 2008

Helen Henderson

T he dots were white with tiny black circles in the middle. There were billions. So many, Martine Stonehouse felt she was swimming in a sea of them. That kind of intermittent visual disturbance is part of what it's like coping with autism.

When she was 5 years old, Stonehouse begged her father to let her join him on the garage roof, where he was fixing something. He refused. She waited.

When her father came down to fetch something, leaving the ladder in place, she seized her chance. She was up there "on top of the world," gazing far and away when her father returned.

"Get off the roof immediately," he shouted. She did. Jumped right down without hesitation. Thinking literally. That's part of having autism, too.

Stonehouse, who survived her roof jump with just a few bruises, is one of a group of adults writing first-hand accounts of what it's like living on the autism spectrum; their stories are in a slim, unassuming book published by the Ontario-based Autism Group. In Our Own Words is a mere 68 pages but it presents a compelling argument for full and adequate government funding of treatment and services for autistic kids.

Most of us understand that autism somehow cuts children off, isolating them in a world where they do not easily make contact with others. Perhaps you think the children might prefer to be left in these worlds, that they do not thank parents, however well-meaning, for trying to penetrate their isolation.

Think again.

Adults looking back talk about their hypersensitivity to noise and bustle others barely notice. They know they are different, have usually been teased and bullied. "People didn't matter to me during that time," writes Stonehouse. "I was more oriented to objects. It was safer but lonely."

Safer but lonely.

Yes, these adults wanted to be reached. And, yes, their accomplishments soared when they learned to interact.

American author Temple Grandin , who has a PhD in animal behaviour from the University of Colorado and also happens to be autistic, makes no bones about the issue in her book The Way I See It.

"Parents, hear this," Grandin says. "Doing nothing is the worst thing you can do. If you have a 3-year-old with no speech who is showing signs of autistic behaviour, you need to start working with your child now."

Easier said than done in Ontario . As an editorial in the Star noted last month, relations between parents of autistic children and Queen's Park remain uneasy after years of battles over waiting lists and eligibility for government-funded intensive behavioural intervention (IBI) therapy.

A recent report recommended a series of benchmarks to monitor a child's progress while receiving IBI, which can cost tens of thousands of dollars a year. That raised concerns that the benchmarks could be used to prematurely discharge children.

In a letter to the editor of the Star last month, Children and Youth Services Deb Matthews herself said Queen's Park is "moving ahead with parents and experts to expand the range of supports available for kids with autism and improving the capacity of the education system to support them, including providing IBI on site for the first time."

The number of children receiving IBI has risen to about 1,400 from 531 since the Liberals took office in 2003, the government says. Annual funding has jumped to $151 million from $44 million over the same period, it says.

Still, service providers say the money hasn't kept up with the demand. They blame funding crunches for waiting lists and say more than a thousand children are facing long delays for treatment.

If you have any doubt about what those delays cost the children who are waiting, read In Our Own Words. It's available in printed form or on DVD from autismontario.com.

Helen Henderson's column appears Saturdays. helenhenderson@sympatico.ca

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

One of our active letter writing listmates, an understandably proud grandfather, has had a letter publish in The Mid-North Monitor last week:

Fear for autistic families
Posted By Dennis Lendrum
Posted 9 days ago

As a grandfather of an autistic child, who has been in the IBI Treatment Program and progressing very well with this therapy. Hopefully the treatment does not end before Alex reaches his full potential.

I have read the proposed October 14th, 2008 document over & over: “The Developement of Benchmarks for the Delivery of Intensive Behavioural Intervention for Children with Autism Spectrum Disorders in Ontario ”

I fear for what will happen to our grandson and the many other children diagnosed with autism in Ontario if the document is adopted by Ontario ’s Government, let along what it will do to autistic adults in the future.

After many years of frustration that the parents of autistic children have had in dealing with Ontario ’s Queen’s Park, we all have our guard up and are suspicious.

If I am wrong, please let me know how this document will help autistic children or adults. I sure hope that I am reading it wrong! But, to me, the present Ontario provincial leaders have just produced a document that will bail them out of their responsibility to be accountable and responsible for the best possible treatment for autistic children here in Ontario and what causes autism.

It appears to me that this document will justify when a child is cut-off. Now instead of it being called “Age 6” it will be called “Benchmarks” in Ontario .

I pray that all Ontario MPPs reject this document and request that Canada ’s federal leaders come up with a National Strategy, so that all Canadian autistic children/adults get the best possible treatment that Canada can offer, no matter where they live.

We know that IBI & ABA are the best possibly treatments at this time. The big question is: Can it be delivered in our present school system or do we need to make the necessary changes, so that all children/adults of Canada get the best possible education/treatment?

This is why the parents of autistic children have been asking our Federal Government for a National Strategy, so that all children of Canada are treated equally.

In reading about the American debate, we can see that the candidates of the American campaign agree that, “Autism is on the rise, and we’ve got to find out what’s causing it now!” (As was stated at Hofstra University , October 15th, 2008).

Senator Jim Munson’s “Pay Now or Pay Later” can give our federal leaders some clear direction as to where we will be in a few years, with autistic children/adults.

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

From the Montreal Gazette:

Football takes back seat to autism

'Toughest thing I've ever done,' Eskimos coach Thorpe says of raising son with the disorder

HERB ZURKOWSKY

The Gazette

Saturday, November 01, 2008

It's a home like many others, a corner lot located in suburban St. Albert . With toys scattered throughout, a small trampoline in the living room, a swing in the basement, it's obviously the home of small children.

But there's one obvious difference, the pictograms - a pictorial symbol for a word or phrase - located in the bathroom, by the toilet and sink, and in the kitchen, on the refrigerator.

Peyton Thorpe, who will turn 5 in December, gets off the school bus close to 4 p.m., about 15 minutes after his sister,

Emma, 6, gets picked up from school by her mother. Peyton's tall for his age, his eyes wide and curious. There are cartoons on the television that catch his attention. Later, he goes to a kitchen drawer, seeking his DVD player. He grunts and groans, almost never talking.

"He's like any other kid," said his father, Noel Thorpe, the special-teams coordinator and defensive-backs coach for the Edmonton Eskimos since late November - after six seasons spent with the Alouettes in the same capacity.

"We treat him like any child, and the goals are the same," Thorpe continued. "I think of him as a non-import fullback in the CFL. The goals are the same, although it may take longer."

Perhaps Peyton Thorpe will become a professional football player. His parents figure he'll be about 6-foot-2 when he finisshes growing and, undoubtedly, with his genetic pool, the possibility exists. His mother,

Erminia Russo, is a former Canadian Olympic volleyball player and now a CBC sports analyst, who recently returned from the Beijing Games.

There's only one potential obstacle in the child's path - autism, a brain disorder that hampers development and affects the ability to communicate and relate to others. The affliction starts before a child turns 3.

Autism has a strong genetic link, though the genetics of autism are complex. Some with autism are relatively high-functioning, with speech and intelligence intact. Others, however, experience severe difficulties in speaking and language.

Recent reviews estimate a prevalence of one to two cases per 1,000 people for autism; about six per 1,000 for autism spectrum disorders (ASD), with ASD averaging a 4.3-to-1 male-to-female ratio. The number of people known to have autism has dramatically increased since the 1980s.

Thorpe and Russo face daily challenges as the parents of an autistic child, and face an uncertain future, because nurturing an autistic child is obviously difficult. The heaviest burden from May until November, when Thorpe's busy with the Eskimos, falls on Russo.

"I'm not going to lie. This is the toughest thing I've ever done," she said. "I competed and trained for 20 years, but that was no comparison. As a coach or an athlete, you put the time in and see improvement. That's what makes this really difficult. Some days are better than others."

"As a parent," Thorpe added, "you must have a great deal of energy. He doesn't learn in a

typical fashion, so you search for different ways. What a typical child learns through observation, he doesn't. We come from a world of routine and repetition. That's what he needs. It's the same with players. They don't all learn the same way. With some, it's verbal, and with others, it's visual.

"With Peyton, you've got to be creative in how you teach and think outside the box.

He's learning, but in a different way. He reads, but then he

needs a timeout to jump on the trampoline."

Their son was like any child until he was about to turn 2. Montreal had lost the 2005 Grey Cup to Edmonton in double overtime at Vancouver .

Thorpe and Russo, B.C. natives who lived in Pointe Claire while he worked for the Als, sensed something was different and just not right. While the babysitter played with Emma, Peyton was off on his own, interacting less. He was speaking less frequently, usually using single words, and there was less eye contact. His name would be called, but there was no acknowledgment. They initially thought it might be his hearing, but that theory quickly was dispelled.

Their pediatrician, Westmount 's Dr. John Yaremko, had suspicions. And with the assistance of Dr. Steve Treherne, part of the Autism Spectrum Disorders Program at the Montreal Children's Hospital, the diagnosis was confirmed in September 2007.

Russo said it took her longer to accept the stark reality of the shocking news and, even then, her initial feeling was one of denial. Her husband was more pragmatic.

"The first thing I felt was disbelief," Thorpe said. "The fear of the unknown and what does the future hold. You finally come to grips with it, which didn't take long. Then you must figure out a game plan, get that organized and determine the best form of action. It needed to be immediate."

There was a sense of urgency, knowing the critical stage for an autistic child is from age 2 to 5. And the parents were advised by Yaremko the process would be long, slow and laborious.

Thorpe conducted a copious amount of research into the disease, how to get the best therapy and what forms worked best. Peyton was enrolled at the Pat Roberts Centre, a Pierrefonds- based adapted preschool offering intervention and stimulation for children with special needs between age 2 and 5.

When the family relocated to Alberta , they found more facilities and services available. Five mornings each week, he receives in-home specialized therapy, lasting more than two hours. And four afternoons each week, Peyton attends preschool where he has been put into an integrated class of 12; six children, all girls, are typical. The remainder have various needs. When Payton's in his daily routine, his parents said he functions better. Weekends and evenings, when life is more spontaneous, have their challenges.

"There have been some breakthroughs," Thorpe said. "One day, you see a cloud over him. Another day, we can see we've broken through, to a degree."

Although there are fears and anxieties on a daily basis, it also has helped to speak with Eskimos receiver Brock Ralph, who requested a trade from Hamilton so he'd have access to therapy for his autistic daughter. Thorpe and Russo also met other families with autistic children; at least one, a teenager, leads a normal life.

"It's great for us to see that's where he can be," Thorpe said. "He can go to university, have a job, get married, have kids."

Other than a handful of

Eskimos players, Thorpe has kept things private, figuring there's no need for his personal and professional lives to overlap. Plus, he wants his players to know he's totally committed and focused. It also helps that

Thorpe's boss, head coach Danny Maciocia, is empathetic.

"This has given me a greater appreciation for the people Noel Thorpe and Erminia are,"

said Maciocia, who also lives in St. Albert . "I can see why he's an outstanding coach from the way he interacts with Peyton."

Thorpe doesn't know what the future holds, but understands there will be challenges and obstacles ahead; hurdles he seems willing to tackle head-on.

"I can't imagine him not speaking. That's a goal," he said. "But let's be honest. If he doesn't,

I won't love him any less. It's about the connection between two people. There doesn't have to be words."

hzurkowsky@thegazette.canwest.com

© The Gazette ( Montreal ) 2008

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

London Free Press:

New centre offers valuable support to family, victims

First facility of its kind opens in city
By DALE CARRUTHERS, SPECIAL TO SUN MEDIA

Information is the best tool for fighting autism, says the head of Libro Financial Group.

And that's why the company decided to donate $20,000 to build the Libro Resource Centre for Autism, president Jack Smit said.

"We are about helping people help themselves," Smit said at the new centre's opening ceremony this week at the Autism Ontario Building in London .

Judy Wright, president of Autism Ontario 's London chapter, said the centre is the first of its kind in the city.

"It provides information, literature, educational materials, computer programs -- anything that would help benefit families and individuals living with autism lead successful lives," she said.

The centre is crucial to families with autistic children, because many other treatment programs have lengthy waiting lists, said Wright, who has a six-year-old autistic son.

"They (parents) can get a diagnosis today and be in our library tomorrow and get all of the information they need to help their child start moving forward," she said.

Autism spectrum disorder is a neurological developmental disorder that results in challenges with communication, social interaction and sensory issues. About one in 150 individuals is diagnosed with autism, Wright said.

Autistic children can benefit greatly from early treatment.

"We have lots of resources that go through early diagnosis," Wright said. "If a family suspects (autism), they come here and grab some literature on it."

But the centre offers more than literature. "We offer support groups specifically tailored to your situation. Get support, because you can't do it on your own."

Libro Financial believes supporting autism is important, Smit said, because it affects families in the community.

"We're very family-oriented," he said of the London-based credit union. "We can only be successful if our communities are successful."

---

AUTISM RESOURCE CENTRE

Where: 600 Sanatorium Rd. , Unit The centre is open 9 a.m. to 5 p.m., Monday to Friday.

Information, educational materials, computer programs and support groups are available.

For more information, call the London chapter of Autism Ontario at 519-433-3390.

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Regina's Leader Post:

Province expands autism services

Pamela Cowan

The Leader-Post

Friday, October 31, 2008

For more than a decade, Lisa Simmermon has advocated for better services for Saskatchewan children with autism. Now that help is on the way, she's pleased but worried.

The provincial government announced Thursday that 15 new consultants and 18 new support workers will be hired by the province's regional health authorities to provide enhanced services and supports to children with Autism Spectrum Disorder (ASD).

"We're in the process of setting up a couple of provincial meetings and the regions are going to be involved in the planning and the hiring of the individuals in order to provide the services throughout the province," said Linda Restau, director of program supports with Saskatchewan Health.

"It's positive to see that they're actually going to try to put in place some people who are targeted specifically for providing some of the treatment services that are needed for autism," Simmermon said.

The consultants, one of the first points of contact for families seeking ASD services, will design individualized intervention programs for children and act as case managers.

"We're looking for someone who has a master's degree in a human services field, so that could be a speech and language pathologist or an occupational therapist or an early childhood psychologist with some additional training in autism," Restau said.

The extra 18 workers will provide direct supports to children with ASD.

"We'd like to see these people with a minimum of two years of post-secondary training and early childhood development and then some additional training specific to Autism Spectrum Disorder," Restau said.

"Again, there's some funding that regions could use in order to provide that additional training to people."

Simmermon applauds the increase in services but questions who will provide the support.

"They must have some amazing incentive packages to draw people from other provinces," she said.

She'd like everyone who treats autistic children to be trained in Saskatchewan , similar to programs offered at the University of Manitoba .

Acknowledging that health-care professionals who are trained specifically to treat autism are in high demand, Restau said funding is available for health regions to either earmark a current employee for the positions and provide them with additional training or try to recruit them.

Restau hopes the new positions will be filled by the new year and expects that health authorities will work with local service providers to put together a plan.

The Framework and Action Plan for Autism Spectrum Disorders Services is the result of recommendations from the Provincial Autism Advisory Committee, which was formed in May to target how the province should spend the $3 million of annual funding allocated for ASD services.

"That committee consisted of a cross-section of various service providers, clinicians working in the field, community-based organizations, parents and ministries," Restau said.

"We also surveyed 650 parents throughout the province and as a result of all those discussions it was decided to place the consultants in the health regions across the province as opposed to just having them in Regina and Saskatoon ."

Besides requesting that services be geographically distributed, parents want early intervention and someone to help them develop a care plan and to assist in co-ordinating the services, she said.

As part of the plan, the Ministry of Health will work with health regions to increase access to summer programming and respite services for the families of children with ASD.

About one in every 166 children born in Saskatchewan will eventually be diagnosed with ASD. The neurological disorder can impact communication, social interaction and behaviour.

© The Leader-Post ( Regina ) 2008

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

Kingston Whig Standard:

Students silent for Autism
Group aims to raise awareness
Posted 1 day ago

Fourteen students at St. Lawrence College in the Autism and Behavioural Science program took a vow of silence to raise money for Autism Ontario : Kingston Sector.

Silent Days lasted 30 hours and raised more than $500 for the Kingston chapter.

"It was challenging to find alternative forms of communication, but we did it," said student Alexandra Bailey.

The group wore pins that explained their silence but still got looks from people who didn't understand why there was no thank-you after holding a door.

"Our professors banned talking in class to support us and brought in cue cards," she p>The group understands the biggest challenge facing children with autism is communication. Those barriers can lead to isolation and behavioural problems, often due to frustration, said Bailey. One of the main challenges of the group as therapists is to develop functional communication skills with autistic children.

Autism is a brain development disorder that usually appears in a child before the age of three. It affects the part of the brain that develops social and communication skills.

Most day-to-day challenges for children and adults with autism revolve around communication issues, both verbal and non-verbal, which impact social interaction and leisure activities. They may present difficulties when attending school or work.

An average of one in every 165 children has Autism Spectrum Disorder. In Ontario alone, there are approximately 70,000 individuals with the disorder, according to Autism Ontario .

Autism is still a fairly newly identified disorder and medical and educational professionals are still in the process of learning how it affects people. Similarly, the students are still developing methods of therapy that would be effective when working with autistic adults and children.

Students have organized a Halloween

fundraiser in hopes of raising at least $2,000 for the Kingston chapter of Autism Ontario .

A silent auction will take place at the event, with items including Leafs tickets, that have been donated by local businesses and families.

The fundraiser, dubbed "Thrilla Bash" is for people 19 years of age and older. It will be held at Brandees Bar, 178 Ontario St. , tonight at 9:30 p. m. Admission is $10 and includes a drink.

Copyright © 2008 The Whig Standard

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Halifax Chronicle Herald:

Autism therapy works, but . . .

Province won"t expand program

By JOHN GILLIS Health Reporter

A treatment program for Nova Scotia children with autism works well for those who can get it, an independent evaluation says.

But the provincial Health Department has no plans to expand the service to accommodate all those children who might benefit.

Isabel Smith, a researcher based at the IWK Health Centre, evaluated 27 children who completed a year of treatment as part of the early intensive behavioural intervention program.

She found all of them had significantly improved communication skills. They also had better problem-solving skills and reduced behavioural problems.

Autism affects normal brain development, leaving most people who have the disorder with communication problems, difficulty with social interactions and a tendency to repeat specific patterns of behaviour, according to the Autism Canada Foundation.

The Nova Scotia program, delivered around the province, involves a treatment team that may include autism support workers, speech language pathologists, psychologists, occupational therapists and social workers. The service is tailored to individual children.

Standard evaluations showed children gained more than a year’s worth of language during a year of treatment.

Tracey Avery, the mother of two children with autism, said the program would help her boys reach their full potential.

"This program has started my boys in a direction that has shaped the way that they learn in a school setting," she said in a news release. "I will never forget how Kyle began to speak after five long years of silence and how Brandon ’s challenging behaviour improved with continued support."

Ms. Smith found the program had positive effects for whole families and 95 per cent of parents surveyed said they would recommend it to other parents of autistic children.

But as it stands, children are only accepted into the program on a randomized basis as spots open, said Patricia Murray, the Health Department’s director of children’s services.

The Health Department does not have current provincial numbers. But, as of March, 117 children had participated in the program since it began in 2005.

Ms. Murray said when the program was being developed it was estimated that at any given time there would be 230 to 250 children in the province who could benefit from the service.

"We’re really pleased with the outcome," Ms. Murray said, "but, at this point in time, there isn’t a plan to expand it."

The program costs $4 million a year.

( jgillis@herald.ca)

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

Shared by a listmate:

Yes I Can Nursery School has a few available openings in the following classes:

Communication (Senior) Class (4 - 6 yr olds) Tues & Thurs mornings

(student ratio 4: 1….welcoming our children with additional needs)

Social Skills Class (4 – 6 yr olds) Tue & Thurs afternoons

(building social skills , school readiness)

Location: Yonge / Lawrence

Call: Janet or Jori 416 486 4911

Google alert

http://canadianpress.google.com/article/ALeqM5gnpnVgOO6oKOjywBVjQfVsq1sktw
Bad reputations dog young dads, but experts say reality is more complex

Oct 30, 2008

TORONTO — At the age of 21, Matt Chartrand thought he was ready to become a dad.

He'd spent half his teenage years hitchhiking around Canada after fleeing a violent home in Hamilton and had finally settled down in Ottawa .

He'd fallen in love with a woman he met at a Salvation Army shelter, had found work, and wanted to create the sort of close-knit family unit he had never experienced himself.

But when his son Jason was born, Chartrand learned firsthand that the new baby wasn't going to be the only one growing up quickly.

During the 10 years of Jason's life, Chartrand and his partner have learned not only the basics of child-rearing and the complexities of raising a family on a limited income, but how to cope with an autistic child who didn't utter a word for the first five years of his life.

Although he has no regrets about the hardships he's gone through and wouldn't exchange his son for the world, Chartrand acknowledges the decision to become a father at such a young age was not wise.

"It was a bit of an immature decision at the time," Chartrand said in a telephone interview. "I would never do it over again. I didn't think of the consequences of having a child back then."

Support workers who spend their days with young fathers say the reality check Chartrand experienced when his son was born is typical of young men who find themselves thrust into fatherhood.

Less common is Chartrand's decision to seek support from community groups and remain actively involved in his child's life, though they add that more dads would follow suit if they enjoyed the same access to social resources as young mothers.

Tim Paquette, chair of the Father Involvement Initiative - Ontario Network, points to a disparity in both the quantity and quality of services offered to young parents, saying women have access to a wide range of support systems that often shut fathers out.

"I think we've done a really good job of building a comprehensive system for the young mom, but we're really missing the equivalent for dad," he said.

"We're not being as inclusive of the dad as we could be. And that piece is missing for the baby and the developing child."

Through his years as a field worker with young fathers, Paquette believes the stereotype of the youthful, deadbeat dad is distorted, adding that systemic barriers often prevent young men from playing a greater role in their children's lives.

Fathers' names are not required on birth certificates, meaning that some would-be dads are excluded from the outset.

Paquette says some mothers also choose to conceal the presence and identity of a father in order to receive greater financial assistance from the government.

But Paquette feels the lack of community support services plays the greatest role in deterring young dads from embracing full parental responsibilities, adding that it reinforces the notion that the father's role is secondary.

"The man that wants to enhance his parenting skills finds a lack of programs and services, which really says a lot about the young man's role, that it really is dispensable."

Paquette says the solution is a sort of "one-stop-shop" where men have access to pre-and post-natal services, daycare, counselling, education and support programs.

One such facility, the Father Involvement Program in Abbotsford, B.C., is touted by some as a national leader in paternity support, and program co-ordinator Jeff McLean says the services offered have helped preserve many father-child relationships.

McLean says many young men under 25 are wary of using the organization's many offerings, but says a weekly floor hockey game with program staff and peers in the same situation often helps break the ice and shows that help is available.

McLean says many dads go on to take advantage of the parenting classes, relationship mediation courses, career counselling and individual support where they have the advantage of seeing firsthand how other fathers interact with their children.

"What I've seen is that a lot of these dads who would have walked away, when they actually have someone who comes alongside them and says 'I believe in you,' they rise to the occasion and do some pretty amazing stuff."

Chartrand credits community support for helping him and his wife to overcome the challenges involved in raising Jason, though he, like many of his contemporaries, struggled for years to find suitable programs.

It took five years for Jason's autism to be diagnosed, but progress was rapid once support workers and educational consultants were brought on board. They helped devise a program that has eventually turned Jason from a silent, sometimes aggressive toddler to an imaginative, chatty child.

Chartrand now devotes much of his own time to his local father support program, hoping to encourage other young men to follow his lead.

"I think the stereotype of the deadbeat dad is what makes guys give up so easily," he said. "If they had the right support or help, they could make it through."

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