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 - YouTube.com
Contact us at info@autismfile

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

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

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

Police find Ajax boy TheStar.com - GTA - Police find Ajax boy
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: www.hrsdc.gc.ca/consultations

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

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

By phone:

819-994-0335 (National Capital Region)

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

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

TTY: 819-934-6649

By fax: 819-994-8634

By regular mail:

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

We look forward to receiving your feedback.


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

How to Access the Survey

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This from the Toronto Sun:

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


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 TheStar.com - 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 horizonartscamp.org.

Diane Flacks is a writer/actor/author

living in Toronto. dianeflacks.com

From the Montreal Gazette:

A place for kids to learn to be kids

By Sarah Jackson, Special to Surrey NowJuly 24, 2009

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

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

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

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

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

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

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

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

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

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

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

Guide dogs to protect autistic kids
Posted 2 days ago

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Editorial comment from PatL:

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

From the York Region papers:

Richmond Hill autism camp to honour donors

Published on Jul 23, 2009

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

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

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

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

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

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

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

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

The camp covers the cost of entrance fees and transportation.

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

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

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

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

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

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

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

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

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

Out of the Closet


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

Visit: www.autismontario.com/toronto/cycle

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 canada.com, Burnaby BC

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

Burnaby Now

Wednesday, July 22, 2009

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

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

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

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

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

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

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

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

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

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

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

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

© Burnaby Now 2009

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

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

By David Kirby on huffingtonpost.com.

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

Monday, July 27, 2009

Autism BIG TENT MEETING and news



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

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

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

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

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

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

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

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

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

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

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

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


Bruce and Laura McIntosh

Time Magazine:

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

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

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

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

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

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

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

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

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

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

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

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

My mother was crying.

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

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

Driving away felt like a crime.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But I honestly don't know.

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

See TIME's Pictures of the Week.

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

The Peterborough Examiner:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Toronto Sun:

Province ignoring family's plight

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


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

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

Loving families end up heartbroken.

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

What has happened to our priorities?

This is shameful.


An excellent Lindsay Moir column today:

Ask Lindsay Moir:
Entering High School

Friday, July 24, 2009


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

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

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

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

full-time in the Life Skills class, OR

full-time in the Developmental Class

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

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

Core English Program in the Life Skills class

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

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

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

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

Full time in the Developmental Class

Lunch in the Developmental Class

Special Education van transportation

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

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

Lunch in that classroom with an EA

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

This is not satisfactory.

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

Help! What do we do now??


Immediately (and formally) appeal the PLACEMENT DECISION.

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

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

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

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

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

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


Nancy Morrison
Bradford, ON

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