Alliance for Families with Autism
Visit
www.autismnewsarticles.blogspot.com
to read archived mail
Courtesy of Nancy, .
--- On Sun, 7/26/09, Nancy Morrison
From: Nancy Morrison
Subject: Many articles and important advocacy initiatives to get involved in shared .......7
To: "Nancy Morrison"
Received: Sunday, July 26, 2009, 9:23 AM
This from the UK advocacy campaign, what a great idea for all of us to get involved in......
The Autism File Campaign ... Get Involved!
Due to the huge impact the front cover of the forthcoming April issue is receiving, many mothers of children with autism have contacted us to say they want to get involved.
Mothers are already getting together in groups of 6 and emulating our campaign shot and YouTube clip in their own style. Mothers around the world of all different shapes, colour and size are demonstrating how autism mothers are strong and are 'Delivering Where Governments Have Failed'.
Striking the same pose with the same headlines makes mothers of autism a powerful force as we unite around the world. This is not about expensive cameras, photographers and make up artists; it's about us, the mothers showing our strength. So, grab a camera and 5 other mums and have some fun!
"The campaign is about strength, not weakness, it's about demanding support not hoping for it and it's about how we, the parents are having to deliver where our governments have failed", says Polly Tommey.
Please YouTube any clips and send us your photograph. We will feature these images on the website and in the July issue of The Autism File and at the Autism One Conference in May.
Above all, have fun and some time with friends!
Autism Mothers Unite, April 2009 Video - YouTube.com
Contact us at info@autismfile
A parent facing discharge from the IBI program, has produced a blog of her journey. Of particular interest is the letter from Minister Matthews regarding the decision to terminate the IBI funding for her son..... have a look under the Blog Archives for July 2009.
I just posted a letter from minister Mathews on my blog.
http://www.tooautis tic.com/
For those that heard in the media of this search, a success story to share...... the horror his parents must have gone through during those hours:
Police find Ajax boy TheStar.com - GTA - Police find Ajax boy
SUPPLIED PHOTO
Damon Mirans, 11, went missing from near his Ajax home just before 6 p.m. Wednesday, July 22, 2009.
July 22, 2009
Madeleine White
Staff Reporter
An 11-year-old Ajax boy has been found in Oshawa by police after being missing for several hours.
Damon Mirans, who has autism and cerebral palsy and does not speak, went for a ride on his BMX bike around his neighbourhood's block, near Ravenscroft Rd. and Delaney Dr., just before 6 p.m.
Officers had been searching the neighbourhood for several hours but did not find the boy until 10:45 p.m.
Autism Canada has forwarded the following info, and asked it be sent out to all other contacts in the autism community:
July 22, 2009
Dear
The Government of Canada is giving people a chance to voice their opinion on the rights of persons with disabilities. Please take the time to read the following information, and below you will find the instructions on how to access the survey.
Information from the Government of Canada
On behalf of the Government of Canada, I am pleased to invite you to participate in the online consultation on the ratification of the United Nations Convention on the Rights of Persons with Disabilities (Convention).
The Convention is of great importance to Canadians. Canada signed the Convention in March 2007, meaning that Canada is currently required to respect the general object and purpose of the treaty. The Government of Canada is seeking the views of Canadians, and particularly of the disability community, in order to inform the decision on ratification. These views would also play an important role in informing any measures that may be taken post-ratification at the federal level to further implement the Convention.
This online consultation is fully accessible:
* The content of the consultation Web site is available in the following alternate formats upon request: Large Print, Braille, Audio Cassette, Audio CD, e-Text Diskette, e-Text CD, and DAISY.
* The consultation Web site features a simple design to allow easy navigation.
Many resources are available on the consultation Web site to help you guide your feedback: instructions on how to fill out the consultation questionnaire, a Frequently Asked Questions section, links to useful resources such as the full text and a plain English guide to the Convention, background materials and much more.
Have your say! If you would like to participate in this online consultation, submit your views through the Web site or by email, regular mail, fax or phone. All contributions must be received by the Office for Disability Issues by July 31, 2009, midnight, Eastern Daylight Time.
Feel free to link the consultation Web site to your own Web site and to share the link with others who may have an interest in taking part in this consultation.
Consultation Web site: www.hrsdc.gc.ca/consultations
Please do not hesitate to contact us if you have any questions or require additional information on this consultation:
By email: consultation@hrsdc-rhdsc.gc.ca
By phone:
819-994-0335 (National Capital Region)
866-203-2426 (toll-free within Canada) If you are calling outside the toll-free area, you may leave a message with your name, reason of your call and best time to reach you during regular office hours and a representative will return your call.
1 800 O-Canada: 1-800-622-6232
TTY: 819-934-6649
By fax: 819-994-8634
By regular mail:
Stakeholder consultation
Office for Disability Issues
C/o Intergovernmental Relations
Human Resources and Skills Development Canada
Bell Building
105 Hôtel de Ville Street
Gatineau, Québec K1A 0J9
We look forward to receiving your feedback.
Sincerely,
Laura Oleson
Acting Director General
Office for Disability Issues
Human Resources and Skills Development Canada
How to Access the Survey
In order to complete the survey, please take the following steps:
1. Click here.
2. Click "Consultation on the ratification of the UN Convention on the Rights of Persons with Disabilities" under Current Consultations.
3. Click "consultation questionnaire" under About the Optional Protocol to the Convention. This can be found at the bottom of the page.
4. Either choose the online questionnaire, or download then upload completed questionnaire to access it without being online.
From the Toronto Star, one of the parents leading this lawsuit is the mother of a child with autism:
Two moms file lawsuit against city, union TheStar.com - GTA - Two moms file lawsuit against city, union
Mothers say strike is harmful to children
July 23, 2009
Laurie Monsebraaten
Social Justice Reporter
Toronto's municipal workers' strike is causing "irreparable harm" to children and youth who have been robbed of summer camps, child care, summer jobs and recreation, say two mothers who have launched legal action against the city and one of its two striking unions.
In their application to be heard by the Ontario Superior Court on July 31, the mothers, identified only as A.B. and E.F., say the loss of these programs violates the Canadian Charter of Rights and Freedoms.
And until this constitutional challenge can be properly argued, they are calling on the court to order the city and striking child- care and recreation staff to restore these services immediately.
The legal action, believed to be the first of its kind in a Canadian labour dispute, is challenging the constitutionality of Ontario's Labour Relations Act for not considering the interests of children during the strike, said lawyer Jeffery Wilson, who is representing the mothers and their children.
"The legislation is silent on children and there is no evidence that either side properly considered the impact of the strike on the interests or needs of children or families' ability to manage during the summer months," he said in an interview.
Neither the city nor the Canadian Union of Public Employees Local 79, which represents the city's recreation and child care staff, would comment directly on the legal action.
Of the 3,000 municipal daycare spaces affected by the strike, 88 per cent are subsidized. In its 2007 annual report, Toronto Parks, Forestry and Recreation said there were more than 86,000 registrations for summer and March Break camps at 243 locations (with many kids registered multiple times for different sessions.)
Single mother A.B. said her 10-year-old autistic son was eagerly awaiting the chance to participate in city tennis and drama camps this summer.
The loss of those affordable programs that offered one-on-one aid to her special needs child has been devastating, she said.
"I do not have the resources to fund his placement in a private camp or other such organization," she said in her affidavit.
Single mother E.F. said the strike means her children, aged 6 and 15, "are doing nothing" this summer.
"My 15-year-old son I.J. has lost the opportunity for participation in a youth program," she says in her affidavit. "This is leading him to engage in other less suitable activities, with a risk of inappropriate conduct."
At least eight mental health workers, psychiatrists, social workers and children's advocates have filed affidavits supporting the mothers' claim that the strike is causing serious harm to Toronto's kids.
Ruth daCosta, executive director of Covenant House shelter for homeless youth, said her vulnerable clients have lost important job opportunities and a chance to participate in healthy recreational activities because of the cancellation of city programs.
Child psychotherapist Frances Oliver said the current tough economic climate is making it even more difficult for families who rely on affordable city programs.
"The children feel that and it creates a lot of anxiety," she said.
"One senses the restlessness amongst youth without any structure or programs may be more impactful than the stink and toxicity of lingering garbage dumps," she added.
This next article is not about autism, but about the rights and needs of families of persons with disabilities, and speaks well to the questionairre above. My own editorial comment on this is why has the province left the cap for this funding at $60,000 when costs of living in the past 10 years has risen considerably. This ceilling should be adjusted each year as our cost of living dictates. Letters to your MPP's would help get this message across.....
This from the Toronto Sun:
Heartless: Province cuts family from program that helped them care for disabled daughter
By CHRISTINA BLIZZARD, TORONTO SUN
Last Updated: 23rd July 2009, 11:55am
John and Sandy Wood with their children Scott and Grace in their Peterborough home. (CHRISTINA BLIZZARD/Sun Media)
John and Sandy Wood with their children Scott and Grace in their Peterborough home. (CHRISTINA BLIZZARD/Sun Media)
PETERBOROUGH -- Sweet Grace Wood is one gutsy fighter.
Grace, 11, was born with DiGeorge syndrome, a rare chromosome disorder that results in congenital heart defects and other severe disabilities.
Grace's airways are so constricted, she breathes as if through a cocktail straw. An abnormality with her vocal cords means she speaks in a whisper. It's miraculous she can make any sound, doctors say. She's had three open-heart surgeries and a tracheotomy and spent the first four months of life in hospital.
All the same, the family refuses to treat her like a china doll. Grace attends regular school and takes part in most activities, although she has to use a wheelchair as she can't walk long distances.
Throughout her short life, doctors have told her parents they should give up on their daughter. Every time they say that, Grace beats the odds. Fights back. Proves them wrong.
These days, though, Grace isn't just fighting her daily battle for survival.
Her parents, John and Sandy, are battling government bureaucracy. They've been cut off from a $410-a-month provincial allowance for children with severe disabilities.
$60GS TOO MUCH
In a July 2 letter, an official from the children and youth services ministry told Grace's father that the family was no longer eligible for the Assistance for Children with Severe Disabilities program (ACSD) allowance, as its income now tops the $60,000 income cap.
"They are slowly squeezing people on the top out of the program," Wood said in an interview at his modest home this week. He points out that the income cap has been virtually unchanged in 12 years. Meanwhile, his income has slowly crept up with cost of living raises.
In a letter to Wood, Children's Minister Deb Matthews bragged that the government increased the benefit by $20 a month last year.
"It's no wonder, when families like ours are getting booted out of the program," Wood said. After all, if you're no longer eligible for the funds, you don't get the increase.
Grace's heart disease is so severe that her surgeon at Toronto's Hospital for Sick Children said he can do no more. That's why in 2003, the family took Grace to California for two life-saving surgeries. The first time they went, Grace was in such a fragile condition, she was unable to fly. They took the train.
While OHIP covered the cost of the surgeries, the family had to pick up travel expenses, accommodation and all their other expenses.
Now they're waiting for word on another valve-replacement operation Grace must have in Edmonton. Again, OHIP will pay for the surgery, but the family must foot all the other bills. It's too expensive for the whole family to travel, so only her father will accompany Grace. Sandy and brother Scott, 12, will stay behind.
"Thank goodness for Skype," Sandy said, referring to the free Internet phone service.
The community has opened its hearts to the family. Co-workers at PepsiCo have passed the hat. Scott's Grade 6 class held a fundraising dance and raised $100. Sandy volunteers at the lunch program at Grace's school, which donated its May proceeds to the family.
INCREASED SUPPORT
A spokesman for the children's ministry said the government has increased support to programs for children with disabilities.
"Essentially we put together a plan of care for the child based on their needs, and that will depend on the range of supports they need and their situation," said Kevin Spafford.
"ACSD is one of those that is really geared to low- and moderate-income families caring for children, but there is a range of other supports that are not income dependent that they would be eligible for, depending on their situation," he said.
So, since when did $60,000 become a high income?
This courageous little girl suffers more in one day than most people do in a lifetime. What a pity the government has let her down just when she needs the most help.
CHRISTINA.BLIZZARD@SUNMEDIA.CA
Another editorial from the Sun on this story:
Is this how McGuinty cares for kids?
By SUN MEDIA
Last Updated: 24th July 2009, 4:28am
Premier Dalton McGuinty talks a good game about how his government cares for Ontario's most vulnerable children.
But talk is cheap. Actions count. And when it comes to action, his government is often found wanting.
Consider the story of Grace Wood, 11, of Peterborough, reported by Queen's Park columnist Christina Blizzard this week.
Born with DiGeorge syndrome, a rare chromosone disorder resulting in congenital heart defects, severe respiratory illnesses and other disabilities, Grace nonetheless has one thing going for her outweighing all the others.
She has parents, John and Sandy, who surround her with love, give her as normal a life as possible and make enormous sacrifices to care for her at home, thus saving the state the far higher cost of institutional care.
How has the state responded? By cutting off a $410-a-month provincial allowance for children with severe disabilities the Woods had been using to help pay the electricity for an oxygen machine that helps keep Grace alive.
Why? Because the family's annual income recently edged over $60,000, even though this cut-off line doesn't factor in inflation and has remained virtually unchanged for 12 years.
Ontario Ombudsman Andre Marin, who has regularly gone to bat for Ontario's most vulnerable children, has described what is happening to families like the Woods perfectly. While not talking about Grace's particular case, he calls it "rule-itis."
"Rules, policies and guidelines exist for good reason," Marin has said. "But they are not foolproof and civil servants shouldn't always take the easy way out by mechanically and reflexively following them if their application leads to results which are palpably unfair or asinine.
"In far too many cases, we have seen compassion fatigue in the public service ... sometimes, you need to grow a heart."
But if bureaucrats lack heart, plus the judgment and initiative to address obvious injustices rather than just "following the rules," it's because the politicians they serve have failed to instill those values within them.
Which is why the buck stops with McGuinty, when appalling decisions like this are made by his government.
And in the Star, a family responds to this when they were faced with the problem with their child with autism:
`Where's Ontario's humanity?' mom asks TheStar.com - Ontario - `Where's Ontario's humanity?' mom asks
BILL SANDFORD FOR THE TORONTO STAR
Anne Larcade, shown with sons Emile, 13, left, and Alex, 19, once launched a lawsuit to help families get care for their severely disabled children.
Still no policy to ensure parents won't have to lose custody to get care for disabled kids
July 23, 2009
Tanya Talaga
Queen's Park Bureau
Single mother Anne Larcade eventually won long-term health care for her son Alex from the Ontario government after nearly losing custody of him to children's aid officials nine years ago because she could not afford to place him in a special group home.
Larcade was outraged after reading Monday's Star story on the plight of an Ottawa family faced with a similar problem – years after the province vowed to make sure parents would never have to give up custody rights to secure medical care.
"Where is Ontario's humanity?" Larcade said in an interview this week.
The Huntsville mother and a chorus of others are calling on the province to put an end to the situation once and for all by returning to the use of special needs agreements to ensure severely disabled children receive proper care and remain in the custody of their parents.
Matt and Ioulia Gallinger of Ottawa are trying to raise their severely disabled 11-month-old, Daria, at home, but fear they may not be able to in the long run because of a lack of provincial support for special-needs children. A brain injury during birth left Daria with severe cerebral palsy and developmental delays. She needs around-the-clock medical care.
The Gallingers say they've been told if they can't afford the bills, they can surrender custody of Daria to the children's aid society.
Larcade was the lead plaintiff in a $500 million class-action suit against the province that was dismissed in 2006 by the Ontario Court of Appeal. Larcade took the case to the Supreme Court of Canada, where it was also dismissed.
The Child and Family Services Act at one time allowed parents to enter special needs agreements with the government, under which they would retain custody of their children and still get specialized access to group homes and services.
The previous Conservative government put a moratorium on such agreements in 1999. Instead, ad hoc solutions and funding are scraped together by the government for individual families.
"There is no provision for care beside special needs agreements," Larcade said. "It is a grey wasteland for parents of frantic Internet research, doctors who don't know, services that are a fragmented map in disarray, and government people who say, `I don't know what to do.'"
Alex is now 19 and has lived in care for nine years under a special agreement, Larcade said. "He is autistic and mentally delayed, but yet is one of the most beautiful minds and human beings I have ever known. We would not have maintained custody save for the pressure on our story through the media which brought to bear a satisfactory, one-off, solution. The government said this would never happen to another family," she said.
Last month, Ontario Ombudsman André Marin revealed his office was contacted by 24 families, including the Gallingers, who feared they could be forced to relinquish custody because they can't afford their children's medical costs.
Four years ago, Marin found 150 families forced to surrender parental rights to children's aid societies to get around-the-clock medical care. The government stepped in, investigated each case and returned children to their families.
"The plight of children with special needs is a dark chapter in Ontario public policy," Marin told the Star this week. He has urged the government to reintroduce special needs agreements separate from child protection matters.
The Ministry of Children and Youth Services remains committed to solving each case individually, and is not considering a return to special needs agreements, said ministry spokesperson Kevin Spafford. "This is the route we've chosen," he said.
The Gallingers have been offered short-term assistance from the ministry and can have a home caregiver until February, at which time Daria will be 18 months old and ready for daycare, Ioulia Gallinger said. But to go to daycare, Daria needs a specially trained aide or nurse, and there are no commitments from the government past February, said Matt Gallinger, a United Church minister.
Special needs agreements were put in place to deal with these cases and "nothing has replaced it," said Mississauga lawyer Laughlin Campbell, who nine years ago helped attain long-term government funding for Luca Rosati, a then 2-year-old severely disabled boy with cerebral palsy whose story was featured in the Star.
From Parent Central:
Logo
ADRIEN VECZAN/TORONTO STAR
Grandmother Marie Fletcher balances Braiden-Makai Bell, 3, left, and Noah-Rylan Catt, 6, on her wheelchair, which she uses to cope with arthritis. Emilee-Cheyenne Catt, 9, tries to help with her brothers, who have autism.
Art camp a welcome respite for girl who grew up fast
July 25, 2009
Diane Flacks
Special to the Star
Nine-year-old Emilee-Cheyenne Catt watches her little brother Braiden catch his reflection in the window of their oven door. Braiden screams in delight, which causes Emilee to collapse in giggles.
"Do you like being a big sister?" I ask.
"Not very much," she responds.
Emilee's version of being a big sister involves helping to care for her two younger brothers, who Noah, 6, and Braiden, 3. Both have autism.
Emilee's mother, Frieda Bell, died two years ago, succumbing to a fast-moving necrotizing fasciitis infection that centred in her lungs. She died in her sleep, while her mother Marie Fletcher, 59, slept beside her and Emilee slept on the floor by their bed.
The day I meet Emilee would have been Frieda's 30th birthday and Emilee is wearing a pink "I love (heart) mom" T-shirt. She searches for a Cabbage Patch doll that is one of the few remaining gifts her mother gave her but is too overcome by tears to play with it.
Then Fletcher, who is raising the three children on her disability pension, reminds her that the doll's hair turns blue when you touch it. Emilee shows me. It is pretty cool.
Emilee plunks down beside me on the couch in Fletcher's small Toronto apartment.
"I can get Braiden to look at me," she says proudly.
"I sing `Row, Row, Row Your Boat.' I say it in a weird way, then I tickle him and then he jumps and gives me a hug."
The brothers, whose full names are Noah-Rylan Catt and Braiden-Makai Bell, are each a challenge in his own way. Sounding older than her years, Emilee explains that although Noah's autism is not as severe as Braiden's, Noah is a high-risk runner. When he's overwhelmed, he darts. And he's big and fast.
"He ran away at a birthday party yesterday," she says, giggling nervously. "He almost ended up in the Humber River!"
Between coping with her grief, helping her brothers and dealing with bullies who may pick on them at school or in the neighbourhood, Emilee has few places where she can be a kid. And now one of them, a bright spot in her life, has been cut back.
Horizons Arts camp, which she attended last year for the first time, is in session for only three weeks this summer instead of its usual six.
Horizon targets underserved neighbourhoods and, through funds contributed by private donors, is able to offer subsidies. Most campers pay $150 for the three weeks.
The program, held at Portage Trail Community Junior School, in the area of Jane St. and Weston Rd., focuses on arts and outdoor activities, providing a warm, inclusive and empathetic place for kids to be. The goal is to make camp a haven for each child, explains Horizons founder Lisa Phillips.
The councillors are specifically oriented to offer attention, affirmation and pure kid-time to campers. They go out of their way to respond to the campers' unique needs, Phillips says.
Phillips, too, goes out of her way.
Last year, just getting to the camp bus stop proved almost impossible for Emilee. Fletcher has arthritis in her hands and spine, so she used her electric wheelchair to ferry the children. The boys were strapped in, to ensure they didn't dart off into the street.
In the first week, Emilee was often late. That's when Phillips arranged for a separate bus stop for the family. They called it "Emilee's stop."
"They made it possible for her to go," Fletcher says simply. "If it would have rained, how would I have taken them all on my chair?
"The camp cares about every child and their history. Nobody has a camp go out of their way like Horizons did."
Emilee says the best thing about camp is the absence of fights.
"Don't be worried if kids make fun of you – councillors are there. They won't let you get hurt or anything. Because, before, some kids were actually nervous to go."
Phillips says Emilee arrived at camp last summer withdrawn and bereft. By the end of the then-six-week program, she was presented with a Miss Einstein award for always asking questions and a Miss Artiste award for her drawings. She gained confidence and won the love and respect of her peers and the adults.
"When Emilee left, everyone was crying," Phillips smiles.
"Even the older kids!' exclaims Emilee.
"I've never seen a man cry," adds Fletcher, hugging Emilee, "but her councillor, Blue, was crying on the last day of camp."
With all the complexity of caring for the boys, Fletcher knows how desperately her granddaughter needs one-on-one time. That's why Horizons is so important.
"And this is just one family," Fletcher says. "There are so many others, with stories worse than ours."
During my visit, Emiliee peers at my laptop. "Why are you making so many spelling mistakes?" she asks.
"I can't type as fast as you talk, so I misspell," I explain. "But I can understand it."
Emilee nods. She, too, creates stories – by drawing pictures and asking her brothers to put them together, to make sense of them.
In another way, Noah is making sense of things.
"He asked me out of the blue two days ago, `Where's Mommy?'" Fletcher says. "I told him she was in heaven. He ran up to the ninth floor to try and find our old apartment. It was the first time he said anything about it. I was shocked."
Emilee leans into the breeze from a small rotating fan that sits precariously on the edge of the couch. Her long dark hair blowing across her face, she asks Fletcher to stop talking about her brothers.
"I don't want them to have autism," she says.
But it's clear what she really doesn't want us talking about is her mom.
Her grandmother moves to comfort her but, suddenly, has to break off the embrace to intercept Braiden, who has taken off his dirty diaper. It's the second time this has happened since I arrived.
Fletcher is a fierce advocate for all of her grandkids. She has managed to get Noah in to a psychiatric counselling program at the Hospital for Sick Children and Braiden is coming to the top of a waiting list for intense intervention with his autism.
Meanwhile, the family needs to get through the long and busy days of summer.
To inquire or to donate to Horizons Arts Camp, please go to horizonartscamp.org.
Diane Flacks is a writer/actor/author
living in Toronto. dianeflacks.com
From the Montreal Gazette:
A place for kids to learn to be kids
By Sarah Jackson, Special to Surrey NowJuly 24, 2009
Every weekday morning, a parade of preschoolers exit Harmony House and walk two blocks to White Rock's Crescent Beach. With several autistic children and about 10 others in the program's care, that's an impressive feat.
The Harmony House Centre for Autism Research and Education Society is unique because of its integrated classroom. It opened nearly three years ago as an educational facility that teaches children how to build strong relationships with all types of people.
The staff members, one for every three children, are all trained in applied behavioural analysis. Harmony House readily welcomes kids with developmental disabilities, but its main goal is to help all children strengthen their social skills.
Executive director Bohdanna Popowycz Kvam says kids in other early-education programs "know how to read and write, but they don't know how to make friends and that's super important to us."
She says Harmony House programs help children who are less capable in social settings after they move on to elementary school.
The staff members stress lessons about standing up for yourself, entering social situations, conquering shyness and fighting worries.
In addition to the parent-participatory preschool, Harmony House offers after-care programs and several types of behavioural training for parents.
Tracy Schjelderup loves that Harmony House encourage social situations. Her daughter Jordan has attended the preschool since it opened in 2007.
"She's a beautiful child and you don't really see the yelling, but it happens," Schjelderup says.
"They just know how to handle her."
© Copyright (c) Lower Mainland Publishing
From the Kington Whig (and I included one of the three posted editorial responses following the aritcle, it was too good not to share)
Guide dogs to protect autistic kids
ASSISTANCE
Posted By EMILY DAVIES
Posted 2 days ago
Families with an autistic child will soon have a new tool to assist them with the announcement of the Lions Foundation of Canada's new Autism Assistance Dog Guide Program.
The organization plans to have 20 golden and Labrador retrievers trained by July, 2010, with 10 graduating by January, according to trainer Chris Fowler, who co-founded the first autism service dog program with his wife in 1996.
"The growth in autism is phenomenal," he said. "When we started the program ... the number of kids diagnosed with autism was one in 10,000 and now it's one in 165.
"I just felt that this was a great need to provide more services to families with children with autism."
Fowler, who carries a developmental service worker diploma, said the dogs are designed to act as a security blanket for children with autism.
"The dogs are tethered to the child and they take commands from the child's parents," he said. "If a child with autism is crossing the street without looking, the child's parents can command the dog to stop.
"Parents with a child with Autism have to hold onto their child's hand or their child will dart. With the dogs, the child has someone with them all the time. The dogs give the child some independence from their parents."
Fowler said the dogs are also meant to provide the children, aged four to 12, with comfort and security in social situations.
"They often have a hard tie transitioning from one place to another, like from the house to a restaurant," he said. "The dog is a constant. They do provide a calming effect and they can increase socialization."
Fowler, who has lent his expertise all over the world helping other dog-training schools learn to train autism assistance dogs, said he will choose the families to participate in the program.
Sandy Turner, executive director of the Lions Foundation of Canada Dog Guides, said the autism assistance dogs are the newest of a variety of canine assistance programs the organization supports, including vision, hearing, special skills and seizure response dog guides.
"There's been a huge world wide showing that the dogs can aid (autistic) people," she said.
Turney said her organization trains a total of 125 dogs a year for all of its services and the foundation doesn't charge its clients for any of them.
"All the dogs are provided at no cost to the client, so we need to fundraise for them."
Since its inception in 1983, the Lions Foundation of Canada has helped more than 1,500 men, women and children through the use of their dog guides.
For information on the Lions Foundation's dog-guide program go to www.dogguides.com.
Editorial comment from PatL:
This is wonderful news. Finally some good news for Families with children with Autism. Thank you from the bottom of my heart!!!! If only the government would show such compassion towards our children, instead of cutting them off their much needed programs. The number of children being diagnosed with Autism is increasing at an alarming rate. Instead of supporting our children, the government is finding ways to cut off our childrens supports. Truly very sad. Maybe the Lions Club could show them how to run the programs!!!!
From the York Region papers:
Richmond Hill autism camp to honour donors
Published on Jul 23, 2009
A special open house will take place in Richmond Hill next week for a summer camp for special children.
In 1987, York Region parents wanted a quality summer camp experience for children with autism.
“The programs were not suitable for their children or they simply did not have enough staff to meet their child’s special needs,” said Autism Ontario York Region chapter co-ordinator of camp programs Paul Kalmykow. “So they started their own for two weeks on the site where Canada’s Wonderland now stands. It was a great success.”
It still is, 22 years later. Now an eight-week summer program, it encompasses Autism Ontario Kids Camp, Autism Ontario Adult Summer Program, and, in co-operation with Kerry’s Place Autism Services, Youth Camp for adolescents with high-functioning autism and Asperger’s Syndrome.
Together, these programs form the largest day camp program in the province dedicated to children, youth and adults with Autism Spectrum Disorder.
The camps employ 38 staff assisted by high school volunteers welcoming almost 80 campers attending at least one week of camp.
“Because of the complexity in meeting the needs of our campers, we have very high standards for staff hiring and compensation,” Mr. Kalmykow said. “We intensively train our staff and have unprecedented support ratios of one staff to one or two campers. We’re also committed to getting our campers out into the community as often as possible, as this is something families often find difficult to do.
“We go to major attractions (such as) Wild Water Kingdom and Canada’s Wonderland, swimming, restaurants, movies.”
The camp covers the cost of entrance fees and transportation.
As a result, the camp is expensive to run, Mr. Kalymkow added.
A core group of funding agencies and foundations assist in defraying costs.
In recognition of their support, this event will be held Tuesday at 10 a.m. at St. Charles Garnier School on Castlerock Drive.
The Ontario Trillium Foundation, the Town of Richmond Hill Tastes of the Hill Committee, the Ontario Ministry of Children and Youth Services, The HRSDC Summer Jobs Program, the Autism Ontario Possibilities Fund and the Toronto Star Fresh Air Fund are to be recognized.
Many of the campers come from single-parent and newly arrived Canadian families and those who can’t afford other camps or need government funding, Mr. Kalmykow said.
“Fortunately, we have a solid core of funding agencies and foundations that believe in and support our programs,” Mr. Kalmykow said.
“They have given us so much over the years.”
For further informatiom, call 905-780-9587 or e-mail aokcamp@gmail.com.
Article in Today's Parent magazine. My 10 year old has been asking me about his autism, we just explain his autism is why some things are a bit harder for him to learn and why he gets some extra help at home and school. This is an interesting article printed:
Out of the Closet
julie-and-mac-ii
As some of you know, my oldest kid has autism. We take this autism stuff pretty seriously and as a result he has made remarkable gains. Indeed, to the untrained eye he is indistinguishable from his neuro-typical peers.
Last weekend four of the kiddos did a triathlon. When “Number One Son” finished the running component too early, it was obvious he got confused somewhere along the way. Turns out he went around the wrong pylon cutting the run short.
That evening my 8-year-old daughter came into my office to have a chat about her brother:
Kid: “Why did he get confused in the run today?”
Me: “Well, there were no marshalls directing the kids so he went around the first pylon and came back.”
Kid: “What is his ‘diagnostics’? I heard talking about it at a meeting once.”
Me: “Was it the Autism Ontario meeting?”
Kid: “Yes”
Me: “Well, uh, autism. But he has worked pretty hard and kind of outgrown it.”
Kid: “Like I outgrew my milk allergy?”
Me: “Yes, kind of.”
Kid: “Does he still have autism?”
Me: “Do you think he does?”
Kid: “I think he still has it a little bit.”
Me: “Yeah, I think you’re right. Listen, I have not talked to him about it yet so you need to keep this private until I speak to him about autism.”
Kid: “no problem.”
Me: “Thanks for being such a cool kid.”
Kid: “you’re welcome. Can I have a cheese stick?”
Although I was shocked that the conversation happened, it’s actually kind of weird that it took so long to come up. I mean, we have an autism logo on our car, we do Cycle for Autism, hang out with people whose kids have autism, and participate in all kinds of activities within the autism community. Didn’t they ever wonder?
I got to wondering about their lack of wondering – do all the siblings and cousins know about his autism on some level but just not question it? Maybe it’s a kiddo case of “it is what it is”.
My mother often reminds us of the time she sat us down as children to discuss her sister, who has a mental disability. Mom first asked us if we knew anyone with a mental disability. We rhymed off the names of kids at school, a neighbour and other random people who did not actually have a mentally disability. The one name we didn’t say was that of our aunt, and this was an aunt we were close to and saw regularly. My mom always says that to us, our aunt was just herself – no title, label or explanation necessary.
I’ve been dreading the day when I have to “out” my son to himself. I’ve played the conversation in my head a thousand times. This incident got me thinking that maybe all this worry is for nothing - maybe he is just like his siblings and cousins and already knows and accepts his autism.
I am sharing info about the Toronto AO Cycle, so many of our listmates are from the GTA:
Celebrating Our Event’s 10th Anniversary
Supporting families living with
Autism Spectrum Disorders in Toronto
Ride, Glide N’ Stride for Autism
Sunday, September 13, 2009
THISTLETOWN REGIONAL CENTRE
51 Panorama Court, Toronto (north/east of Finch and Kipling)
Special Guest Speaker:
YTV’s “CRUNCH” Host: Andrew Chapman
CRUNCH is YTV’s Saturday morning, hosted cartoon block, airing the
best in animated programming from 7 a.m. to 12 noon. CRUNCH invites
kids to “Take Back Saturday Morning” and liberate them from their regular week of homework, chores, appointments and serious parent negotiations.
With his playful style, host Andy gets kids to just laugh and be a kid while enjoying their Saturday morning cartoons. Kids can unite in the name of
fun 24-7 on the web, through CRUNCH message boards, blogs and more.
Long Live CRUNCH!
Registration: 9:00 am
Route Kick Off: 10:00 am
Participants get their photo taken prior to route kick off
Enjoy a free BBQ
New this year – Our 1st ever Awards Ceremony in honour of you!
Date to follow*
For more information about becoming a Sponsor, Volunteer or to Register contact:
Autism Ontario - Toronto Chapter at: 416-489-0702 or
Visit: www.autismontario.com/toronto/cycle
Charitable Number: 11924
From the Winnipeg Sun:
Disabled boy hurt on bus
Lock gives way, tipping wheelchair
By PAUL TURENNE, SUN MEDIA
Last Updated: 23rd July 2009, 10:27am
Melissa Burling, with her eight year old son Alexander, is upset that Alexander was hurt on a city bus. (Brian Donogh, Sun Media)
Melissa Burling, with her eight year old son Alexander, is upset that Alexander was hurt on a city bus. (Brian Donogh, Sun Media)
A St. Vital boy was injured Tuesday when a wheelchair lock on a Winnipeg Transit bus let go, causing the boy to smash into a bus seat, face first.
The boy's mother said it's not the first time the locking system has failed to properly restrain her son's wheelchair, and is upset Transit is not paying more heed to her calls to improve the locks in the wake of the incident.
Routine turn
"I'd like them to further their measures with those locks. Clearly there are issues with them," said Melissa Burling, whose eight-year-old son Alexander toppled over and hit his jaw on a bus seat after a lock gave way and tipped over his wheelchair.
Burling said she and Alexander were on a No. 51 bus leaving St. Vital Centre Tuesday with one tire of Alexander's wheelchair properly locked into a restraint on the bus.
But when the bus driver made a routine turn at normal speed, the lock gave way.
"The lock let go and the whole wheelchair tipped over and he screamed," Burling said of Alexander, who has cerebral palsy and autism. "He hit the other seat with his jaw. He hit the plastic part."
"The bus driver was really nice. It was no fault of his, it was the lock."
Burling complained to Transit, but was told an investigation could take weeks.
Keith Martin, operations manager for Transit, said the driver reported the incident and the mechanism was examined overnight. No problems were identified, but Martin did commit yesterday to looking further into the matter.
Martin said he's heard of the occasional incident but cannot remember a "claw clamp," as the devices are known, ever being proven faulty.
Martin said people sometimes fail to secure the wheelchair properly, but said he assumes Burling did everything right, and was therefore at a loss to fully explain what happened.
Clearly shaken
He said it's difficult to tell after the fact what went wrong if the device isn't obviously broken.
Burling took Alexander to the hospital where it was determined he'd suffered nothing more serious than a nasty knock. However, the boy, who is non-verbal, was clearly shaken by the incident.
"We were coming back from the hospital and he saw a bus and started crying," Burling said. "I can't get him on a bus any more. There's no way."
paul.turenne@sunmedia.ca
From canada.com, Burnaby BC
Workshop, curriculum focus on sexuality
Issues around sex 'very complicated' for adults with intellectual disabilities
Burnaby Now
Wednesday, July 22, 2009
The Burnaby-based Down Syndrome Research Foundation hopes to develop a sexuality workshop for people with intellectual disabilities.
The foundation's Joy Hayden said the organization wants to develop a curriculum that other groups across the country could use to help teach sex education to people with intellectual disabilities.
"It's something organizations and families have always struggled with: How do you approach the subject?" Hayden said.
"It's very, very complicated. That's what we've learned - very complicated."
The curriculum would be based on a recent 12-week program the foundation ran with 10 adults with intellectual disabilities, mostly Down syndrome and autism.
The participants led the direction of the discussions, and the workshop used "some pretty graphic pictures" to spur talk about sexuality, body parts and relationships.
Afterwards, the participants were more able to accurately name body parts, they demonstrated improved knowledge of different types of birth control and how they are used, and they had a better understanding of intimacy and sexuality.
Hayden said young people with intellectual disabilities don't always get sex education in the public school system.
And, if they do, she noted, it's not tailored to their cognitive level and learning style.
"Even though they're adults, mentally many of them are at a young age," Hayden said.
There is also hesitance to give sex information to people with disabilities, and in some ways, society doesn't recognize them as sexual beings, she added.
The foundation plans to run two more trial workshops and then create a curriculum that other groups can use.
jmoreau@burnabynow.com
© Burnaby Now 2009
I am sharing this American article, it makes some very wise statements about the strategies being put in place in the US, and why. Things for advocates to remember when speaking with our elected officials.... it would be wonderful if our government were so forward thinking....
"Tidal Wave" of Autism About to Flood Cash-Strapped California
By David Kirby on huffingtonpost.com.
Broke California will begin the new decade with crushing debt and wholesale elimination of human services. Meanwhile, President Obama has rankled Congressional Democrats with plans to earmark millions of dollars in NIH funds to find the causes and cures of autism.
Are these two things related? You bet they are.
Barack Obama is not a stupid man. He sees the budgetary train wreck hurtling down the track towards the US Treasury. His Administration knows that the number of adults with autism in this country is about to explode. Parents can't foot the bill, so taxpayers will have to. The price tag will be stratospherical.
Isn't it better to earmark millions in autism research funds right now for NIH to identify the causes of autism - despite outcries from Rep. Obey, Sen. Harkin and others - in order to save hundreds of billions further down the road? It's called frontloading the budget, and if we don't do it, the coming army of young adults with autism will march in and break the bank.
Anyone who thinks that a lot of people with autism somehow "grow out of their disorder" by adulthood should take a look at an important article published today in the Sacramento Bee.
Here, you will meet California residents such as Marlon Barton, a 6'2", 283-pound "strapping young man who flaps his hands and makes odd noises," according to reporter Cynthia Hubert. "No one knows quite what to do with him," she says.
Marlon Barton is 26 years old and "acutely" autistic. He scares people. My heart goes out to him, and to his amazing mother.
But they are hardly alone.
"As a tidal wave of these youngsters moves toward adulthood with complex behavioral and medical problems, society is largely unprepared," Hubert writes. "The futures of hundreds of thousands of autistic people in America cannot be ignored for long."
Dr. Robert Hendren, director of the UC Davis M.I.N.D. Institute, concurs. "We don't have the programs. We don't have the research," he warns. "We have this very large adult population of autistics coming along, and we don't know how to deal with them. We just haven't come to terms with it."
California has certainly not come to terms with it - and I have no idea what will happen to the thousands of young people in need who will be showing up at state offices in the next few years, their parents desperately seeking services.
Currently, 81.7% of all autism cases in the state Department of Development Services system are under 18, but that ratio is about to change fast.
There are now 6,300 adult Californians receiving autism services through DDS. But over the next four years, more than 4,000 teenagers will join their ranks. By 2018, the total number of adults with autism will more than triple, to 19,000 people -- each requiring tens of thousands of dollars (or more) in care, education and support services, every year.
California cannot afford it.
