Sunday, May 2, 2010

NEWS posting- courtesy Nancy Morrison, May 2, 2010

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:

From the Sun papers, a miracle to share:

Autistic girl escapes abduction

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.

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

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

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:

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

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.

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.


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.

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.

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

PBS vaccine show link:

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

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 !

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!

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 ( 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

Nancy Morrison
Bradford, ON

Visit: Phil Morrison @ Sussex Home Improvement
(905) 252-8989
(416) 409-4399

Saturday, October 3, 2009

Autism Town Hall Meeting Oct 28 09-POSTPONED



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
Trish Kitching (705) 222-9432
Pat La Londe (613) 372-5580

Saturday, August 8, 2009

BIG TENT - new update

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

I also promised a live chat. I've decided to use -- 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
On GoogleTalk, I'm
On Yahoo, I'm

Thursday, August 6, 2009


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);

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:;

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.


Bruce & Laura

Monday, August 3, 2009

August 2nd AUTISM NEWS courtesy Nancy Morrison

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. (

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

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

"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."

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


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


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.



(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 - 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 - 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 ( or on YouTube
(, 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

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

Forwarding a copy of ARO's most recent newsletter:

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


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,—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

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 and go to Resources, then

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:

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

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

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

Adults, kids find camp life here is A-OK
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:

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

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


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


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


From the Calgary Sun:

Birthday wish delights

Young boy thrilled with opportunity to drive C-Train


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.


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


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!


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

Tuesday, July 28, 2009

IMPORTANT Autism News, Courtesy Nancy Morrison

(Thank you Nancy!)
Alliance for Families with Autism


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 -
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.

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 - GTA - Police find Ajax boy
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

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:

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

By email:

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.


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 - 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


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.


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.


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.


Another editorial from the Sun on this story:

Is this how McGuinty cares for kids?


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 - Ontario - `Where's Ontario's humanity?' mom asks
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:


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

Diane Flacks is a writer/actor/author

living in Toronto.

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
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

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

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


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

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


Charitable Number: 11924

From the Winnipeg Sun:

Disabled boy hurt on bus

Lock gives way, tipping wheelchair


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."

From, 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.
© 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

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.