Autism Town Hall Meeting Oct 28 09-POSTPONED

THIS MEETING IS POSTPONED, STAY TUNED FOR UPDATES.

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


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

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

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


TIME 6:45-8:45

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

For more information please contact:

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

BIG TENT - new update

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



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

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

BIG TENT UPDATE!!!!

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





Subject: Great News about our Meeting!

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

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

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

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

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

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

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

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

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

Peace,

Bruce & Laura

August 2nd AUTISM NEWS courtesy Nancy Morrison

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


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

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



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


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

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

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






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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

Source:
David Coulombe
Canadian Institutes of Health Research




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


Alberta ahead on care of disabled children

July 29, 2009
Tanya Talaga

Queen's Park Bureau

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

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

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

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

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

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

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




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




Comment Letters

Letters to the Editor

By SUN READERS

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

PREPARING OUR STUDENTS

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

KATHLEEN WYNNE

MINISTER OF EDUCATION

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




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



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

End of benefits for disabled girl perplexes dad



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

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

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

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

The Woods' family income is $64,425.

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

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

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

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

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

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

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

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

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

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

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




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



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

Re:End of benefits for disabled girl

perplexes dad, July 30

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

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

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

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

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

Laurie Ann Milne, Timmins






From ARO last week:



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

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

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

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

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

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

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

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

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

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

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

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

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

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







Forwarding a copy of ARO's most recent newsletter:

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

Greetings,

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

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

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

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






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



Interview with Autism Speaks Chief Science Officer on Vaccines


Dear Autism Speaks Volunteer Leaders,

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

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




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

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

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







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


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

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

TO DATE: $570,780

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

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

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

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

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

July 30, 2009
Leslie Ferenc
Staff Reporter


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

James Everest has added another to his long list.

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

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

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

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

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

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

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

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

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

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

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

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

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

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




A fundraiser for National Service Dogs:



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



RETRO DANCE

proceeds to National Service Dogs



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

large amount of vet bills before they were 2 weeks old



Retro Dance

Saturday, August 29, 2009

8pm-1am

Wellesley Community Centre
1000 Maple Leaf Street

Wellesley ON N0B 2T0

Cash bar and light snack provided

DJ, Silent Auction, Door Prizes

Tickets $12/person or $20/couple



Contact: tamsterq@hotmail.com


From the Calgary Sun:



Birthday wish delights

Young boy thrilled with opportunity to drive C-Train

By RENATO GANDIA, SUN MEDIA

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

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

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

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

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

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

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

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

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

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

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

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

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

RENATO.GANDIA@SUNMEDIA.CA


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


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

Friday, July 31, 2009

Question:

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

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

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

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

Answer(s):

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

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

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

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

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

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

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

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

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

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



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



Nancy Morrison
Bradford, ON

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

IMPORTANT Autism News, Courtesy Nancy Morrison

(Thank you Nancy!)
Alliance for Families with Autism

Visit

www.autismnewsarticles.blogspot.com

to read archived mail


Courtesy of Nancy, .

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


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

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







The Autism File Campaign ... Get Involved!

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

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

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

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


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




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


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









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



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

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

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

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








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



July 22, 2009
Dear

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

Information from the Government of Canada

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

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

This online consultation is fully accessible:

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

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

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

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

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

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

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

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

By phone:

819-994-0335 (National Capital Region)

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

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

TTY: 819-934-6649

By fax: 819-994-8634

By regular mail:

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

We look forward to receiving your feedback.

Sincerely,

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

How to Access the Survey

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

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


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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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









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

This from the Toronto Sun:


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

By CHRISTINA BLIZZARD, TORONTO SUN

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

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

PETERBOROUGH -- Sweet Grace Wood is one gutsy fighter.

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

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

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

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

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

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

$60GS TOO MUCH

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

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

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

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

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

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

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

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

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

INCREASED SUPPORT

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

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

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

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

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

CHRISTINA.BLIZZARD@SUNMEDIA.CA




Another editorial from the Sun on this story:


Is this how McGuinty cares for kids?

By SUN MEDIA

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

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

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

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

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

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

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

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

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

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

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

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

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




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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



From Parent Central:


Logo
ADRIEN VECZAN/TORONTO STAR

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

July 25, 2009
Diane Flacks

Special to the Star

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

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

"Not very much," she responds.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Phillips, too, goes out of her way.

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

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

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

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

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

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

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

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

"Even the older kids!' exclaims Emilee.

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

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

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

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

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

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

In another way, Noah is making sense of things.

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

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

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

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

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

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

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

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

Diane Flacks is a writer/actor/author

living in Toronto. dianeflacks.com





From the Montreal Gazette:


A place for kids to learn to be kids


By Sarah Jackson, Special to Surrey NowJuly 24, 2009



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

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

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

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

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

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

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

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

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

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






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



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



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

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

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

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

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

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

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

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

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

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

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



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

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

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

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

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



Editorial comment from PatL:



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




From the York Region papers:




Richmond Hill autism camp to honour donors

Published on Jul 23, 2009

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

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

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

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

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

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

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

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

The camp covers the cost of entrance fees and transportation.

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

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

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

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

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

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

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

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



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


Out of the Closet

julie-and-mac-ii

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

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

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

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

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

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

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

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











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





Celebrating Our Event’s 10th Anniversary

Supporting families living with

Autism Spectrum Disorders in Toronto







Ride, Glide N’ Stride for Autism


Sunday, September 13, 2009

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



Special Guest Speaker:

YTV’s “CRUNCH” Host: Andrew Chapman

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

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

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

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

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

Long Live CRUNCH!


Registration: 9:00 am

Route Kick Off: 10:00 am



Participants get their photo taken prior to route kick off

Enjoy a free BBQ

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

Date to follow*



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

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

Visit: www.autismontario.com/toronto/cycle


Charitable Number: 11924










From the Winnipeg Sun:



Disabled boy hurt on bus

Lock gives way, tipping wheelchair

By PAUL TURENNE, SUN MEDIA

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


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

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

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

Routine turn

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

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

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

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

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

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

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

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

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

Clearly shaken

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

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

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

paul.turenne@sunmedia.ca













From canada.com, Burnaby BC


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

Burnaby Now

Wednesday, July 22, 2009

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

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

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

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

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

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

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

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

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

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

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

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

jmoreau@burnabynow.com
© Burnaby Now 2009








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


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

By David Kirby on huffingtonpost.com.

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

Autism BIG TENT MEETING and news

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

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





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

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

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

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

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

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

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

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

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

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

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

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

Sincerely,

Bruce and Laura McIntosh




Time Magazine:


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

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

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

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

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

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

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

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

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

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

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

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

My mother was crying.

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

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

Driving away felt like a crime.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But I honestly don't know.

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

See TIME's Pictures of the Week.

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






The Peterborough Examiner:


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

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

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

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

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

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

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

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

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

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

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

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

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

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





Toronto Sun:

Province ignoring family's plight

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

By CHRISTINA BLIZZARD, SUN MEDIA

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

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

Loving families end up heartbroken.

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

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

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

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

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

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

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

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

NOT ELIGIBLE

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

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

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

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

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

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

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

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

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

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

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

QUIETLY COPING

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

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

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

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

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

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

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

What has happened to our priorities?

This is shameful.

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




An excellent Lindsay Moir column today:


Ask Lindsay Moir:
Entering High School

Friday, July 24, 2009

Question:

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

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

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

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

full-time in the Life Skills class, OR

full-time in the Developmental Class

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

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

Core English Program in the Life Skills class

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

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

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

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

Full time in the Developmental Class

Lunch in the Developmental Class

Special Education van transportation

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

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

Lunch in that classroom with an EA

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

This is not satisfactory.

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

Help! What do we do now??

Answer:

Immediately (and formally) appeal the PLACEMENT DECISION.

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

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

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

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

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

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







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



Nancy Morrison
Bradford, ON

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

Autism Articles Jan 1-10, 2009

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

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


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


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

W-FIVE

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

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

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

Did you see the dad who walked to Ottawa

I want to walk to Ottawa

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

The priminister brain harper

But i can't take the train

I need to walk

It called making a statement

Duh

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

Not a thirteen year old who takes the train

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

I think i can help

But i need to walk

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

I want to do it

Why don't you think they will let me

But why is it just them fighting for me

I can fight to

Im smart

Im going to ask mom if i can go

People will understand and join in my walk

I will go right to his house

I will sit on the snow and wait for him

I will tell him its time to help

What did dad say

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

I can help

Im not a little girl any more

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

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

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

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

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

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

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

Thank you for your interest!

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


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


From Autism Ontario
FYI:

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

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

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

WITH ATTACHMENTS

FROM Nancy’s list

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

Happy New Year,

Nancy





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

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


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

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



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


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



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

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


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

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

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


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

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



Published in Langley BC:

Athlete Running the Dream

2008/12/19

Craig Spence

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

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

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

CTV.ca News Staff

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

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

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

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

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

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

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

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

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

On his website, Stephen describes how his charity grew.

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

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

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

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

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

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

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Another nice awareness article from the York Region papers:

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

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

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

Carmela Fragomeni
The Hamilton Spectator

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


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


Residents adjust to living in group homes

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

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


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


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

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

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

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

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

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

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

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

Thank you for your interest!

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

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

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

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

The link to our website is www.providencelearningcentres.com

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


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

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

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

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

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

ALL Sweatshirts are on sale for January!

Youth Sizes are $16.00. Adult Sizes are $18.00




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

Please go to Autism Today to read the story.

Sincerely,

Autism Today
news@autismtoday.com


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

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

Taline Sagharian


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

Greg Vojtko / The Press-Enterprise
Nathaniel Mendoza, 12, of Ontario, was diagnosed with autism when he was 8 years old.
Moe Mendoza's son was diagnosed with autism two weeks before his 9th birthday.
"We always knew something was wrong," she said. "When he was younger, we were always in hospital emergency rooms. And at school, he was always hiding under the tables and he couldn't initiate any friendships."
At the time of the diagnosis, Mendoza was married to Nathaniel's father, but they split up within a year and she is a single parent.
"When Nathaniel realized his dad and I were really separated, he started wondering what would happen to him when I die," she said. "There's a park in Ontario with homeless people and he worries that's what will happen to him. He wants to find a way to end homelessness."
The Easter Seals study, conducted by Harris Interactive in conjunction with the Autism Society of America, was sponsored by corporate partner Massachusetts Mutual Life Insurance, which helps families with individuals with special needs access financial strategies for care and future needs.
Mendoza has spent time learning the ins and outs of dealing with county and federal agencies. She helps other mothers in her monthly support group locate agencies and fill out paperwork for financial support.
Moms Night Out, which meets monthly in San Bernardino, is made up of mothers with special needs children.
"A lot of people don't understand the emotional toll of raising a special needs child ... and what it does to a marriage," Mendoza said. Talking with other women in the same situation is helpful.
Nathaniel is an example of why early intervention is important, she said. The research shows that therapy from an early age can make a huge difference.
By the time Nathaniel was diagnosed it had already become difficult to transition him into public school.
He has been kicked out of two public schools and one afterschool program, Mendoza said. He is currently in a non-public school and is working to transition back into a public classroom.
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Greg Vojtko / The Press-Enterprise
Moe Mendoza says her son, Nathaniel, 12, worries about his future should anything happen to her.
Mendoza is on the Ontario-Montclair School Board and she hopes serving on the board will give her an opportunity to speak for families with special needs children.
"Financially, you can't take care of a disabled child alone," she said. "You have to know how to fight for your rights."
The only place Nathaniel has made real progress is the Casa Colina Rehabilitation Center in Pomona, Mendoza said. The center has a social skills program for children severely impacted by their disability.
To pay for these services, Mendoza found non-profit agencies willing to help.
Another organization paid for her plane ticket to the California Legislative Blue Ribbon Autism Commission meetings in Sacramento, where she spoke about the education concerns and financial difficulties of raising a child with autism.
There are agencies that can help with rent, utilities and other cost-of-living expenses in times of dire need, she said. "Unfortunately, that happens occasionally."
The Family and Medical Leave Act provides some protection for parents who are called out of work for medical or health conditions of a dependent, Mendoza said.
But, that doesn't mean bosses are always understanding. And that doesn't mean the leave is paid.
Mendoza works as a secretary for Lanterman Developmental Center in Pomona.
"It takes an emotional toll every time I have to leave work," she said. "I can't afford to buy a home because I miss so much work ... I worry all the time about the costs of his education, medical treatment and what would happen to him if something happened to me."
"This study quantifies what we've heard anecdotally over the years," said Patricia Wright, Easter Seals' national director, autism services. "There is an urgent need for increased funding and services."
For more information on Easter Seals, visit www.easterseals.com. Read about the resources available for people with special needs, their families and caregivers at www.massmutual.com/specialcare/resources.
Reach Jennifer Dean at 951-368-9336, jdean@PE.com or http://blogs.pe.com/moms

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