May 16th – May 24th, 2008
Don’t Miss this event!
Please join the Autism Ontario Halton & Hamilton chapters, as well as the
Canadian National Autism Foundation, for the following talk by Dr. Mel
Rutherford of McMaster University. Please extend the invitation to any
interested persons. Dr. Rutherford's research relies on baby siblings;
the more siblings she has
access to, the more predictive her research can
"The Development of a Fast and Objective Screening Tool for Early
With Dr. Mel Rutherford of McMaster University
Wednesday, May 28th at 7:00 pm
Theatre Burlington, Drama Centre
2311 New Street, Burlington
The same talk was recently given at the IMFAR...
A few press links on the study from the past week (including a few quotes from
Halton member Stacy Maynard)...
Link for flier below to print out and distribute and/or post...
For more about Dr. Rutherford & the Early Autism Study, please see...
We hope to see you there
From Nancy’s List
Video of last weeks press conference along with the City News segment is available on the Ontario Autism Coalition website:
A listmate sent me the following sharing how he has chosen to support Stefan's advocacy in the past two weeks. Even if you don't live in the GTA area, and are not able to attend some of the Queens Park advocacy initiatives in person, you can support the issues dramatically in your own community:
Even though it is totally impossible with two autistic sons, one of which is in crisis just like Stefan's son is, very tempermental, I have taken a little home action and encourage all those whose lives are touched by autism to join us ~ I have put a plain piece of cardboard (two-fold and use Tuck Tape (not duck tape) to hold the two sides together), just like Stefan's sign and I put mine on our front lawn (put over and held up by those little wire things all those adverts are put on) and I have written in big black letters "AUTISM, Go Stefan Go see ontarioautisticcoalition.com for more details."
It is amazing even though we live on a back road, how many people have stopped and looked at our sign.
"If you can't be there with Stefan, support him from the home front" as I say. Let's see action not words Ontario!
The Benchmarks Panel has circulated out the following letter, a third letter to Stakeholders regarding the Panel's work. They have attempted to address some of the concerns that were raised in our recent letter writing, however have left some concerns out of the message.
Of note, the Benchmarks Panel has put out a request to some parents to invite them to a meeting on June 10th. If you are interested in attending or participating, perhaps a note to the Chair of the Benchmarks Panel, Dr. Nancy Freeman, could get you an invite to this meeting. If you feel you have some important input for this panel, and are available on June 10th, this would be a very worthwile advocacy effort to make.
May 20, 2008
Dear Parents and Stakeholders:
I’m writing to provide a third update on the status of the Benchmark Development Expert Panel and to address some questions that we have received. The letters I’ve sent out previously on March 6, 2008 and April 14, 2008 have been circulated to parents and professional stakeholders who have contacted the panel directly with inquiries, to all chapters of Autism Ontario , and are posted on the Autism Ontario website. The Terms of Reference provided to the panel require that all communication come from the chair. Similarly all correspondence from stakeholders can be sent to the chair, and are distributed to all panel members for review.
Since the last letter in April, the panel has continued in its work to develop benchmarks consistent with the Clinical Practice Guidelines. Within recent weeks, we have conducted several important activities toward this goal. We have been in contact with the College of Psychologists of Ontario, the governing body whose role it is to protect the public interest. We have also been in contact with the current president of ONTABA, which is a voluntary association of professionals practicing in the field of applied behaviour analysis in Ontario. We have also continued in our work together with the ethicist, Ann Heesters, Clinical Ethicist, The Ottawa Hospital, who has been very helpful regarding practices for making responsible, ethical decisions.
In addition, the email and telephone survey results have been compiled. The survey was sent to all private providers that the panel was able to identify in Ontario (over 40 agencies and individuals), programs in each province outside of Ontario (with the exception of Saskatchewan which does not currently have a program), and programs and researchers in the United States and internationally. The respondents were asked how many children they served and whether they used (or for researchers whether they were aware of) benchmarks of any kind. For those who indicated having access to formal benchmarks, a follow-up telephone interview was conducted. The telephone interview asked respondents to describe their benchmarks, the intervals for their benchmarking process, whether the specific benchmarks were standardized across all children or individualized by child, and the criteria for program completion.
Once our consultation and stakeholder engagement process with professionals, researchers, and parents is completed, the final report will be prepared by the full panel, which is comprised of: 2 Parent Representatives; 2 Expert Clinical Panel Members with IBI treatment or research expertise (1 Direct Funding Provider, 1 Academic); 2 Clinical Directors; 1 International IBI expert, and the Panel Chair. The findings will be shared with families of children with ASD, ASD service providers, and the Ministry of Children and Youth Services at the earliest opportunity following the completion of the stakeholder engagement process.
As with any benchmarks, we will be recommending regular evaluation and review, to ensure that the benchmarks integrate new research findings as they become available, and as a quality assurance measure. The benchmarks being developed are intended for use by all public and private providers funded through the provincial initiative. Interest in the draft benchmarks has been expressed by other jurisdictions during the survey and interview process. The panel hopes that the benchmarks being developed will be useful for a broader range of clinicians providing intensive behavioural intervention.
The panel has also received some inquiries regarding current practices by regional programs in the province of Ontario . These questions are outside the mandate of the Benchmarks Panel, and should be directed to regional providers or your local regional ministry office.
Dr. Nancy Freeman, C. Psych.
Chair, Benchmark Development Expert Panel
The Autism Speaks Walk in Toronto is fast approaching, here are a couple of special fund raising events being put on by some of our Teams:
FYI all –
Benefit Concert in Kitchener for Team Trystan – Ontario Walk Team.
Also, Team M & M is holding a casino/charity dinner night on May 30 .. they raised $10,000 at their event last year, hoping to do same this year.
Great stuff going on ..
ROCKING OUT FOR AUTISM
Prominent local bands volunteer to play $15,000 benefit concert
May 22, 2008
With statistics showing that rates of children being diagnosed with autism have increased tenfold in the past decade -- one in 150 in North America -- pressure is building to firmly address this mysterious and often misunderstood disease that impedes communication skills and behaviour development.
But as governments at all levels continue to debate the best approach with which to assist families to cope with the weighty financial and emotional burdens that come with having an autistic child, it has mainly been left up to the general public to raise funds to cover treatment costs and to further research.
Ian Kalau is all too familiar with this dilemma. Since becoming stepfather to six-year-old Trystan, the Cambridge resident has worked tirelessly to not only raise awareness of his son's challenges, but also of the need to increase funding for groundbreaking therapy, which at this point is out of reach for most families.
To do this, Kalau has teamed up with Autism Speaks, the leading North American autism advocacy group, started in 2005 by former NBC chief executive Bob Wright. Although its major fundraising drive is an annual walkathon coming up on June 8 in several big cities, including Toronto, Kalau has decided to kick off his own grass roots campaign to raise $15,000 with a benefit concert featuring a few prominent local bands.
"It's been a battle ever since Trystan was diagnosed at the age of three," Kalau says. "You keep hearing more and more about autism in the media, but we're still a long way off from getting families the help that they need. The biggest challenge is that no two children are the same when it comes to this disease, so things like ABA (applied behaviour analysis) therapy need to be given more financial support in order to help out more kids."
Kalau goes on to say that the idea of a benefit concert was the result of wanting to put on an event that would give people a fun night out, while at the same time donating to a worthy cause. Aside from featuring The Dunes, The Stars Here, and Seedy Ease, there will also be some impressive giveaways at the show, including Buffalo Sabres tickets, free rounds of golf and a helicopter sightseeing tour.
"This being the first year we've tried to do this, we wanted it to be clear that all the proceeds will go to a great organization like Autism Speaks," Kalau says. "We're fortunate now that our little guy is in a therapy program and gets some government funding, but we'd like to keep up this awareness campaign so that hopefully in the future we can raise money for some more specific programs in Ontario, or even K-W. My message to people is that right now every dollar counts."
As for getting the bands on board, Kalau says it was just a matter of calling on some old friends. "I grew up with John Dolinar from The Dunes and I have friends in the other bands as well, so I was pretty confident that they would come through for me, and I'm really thankful that they did. I understand that they could have done other gigs that night that paid, but I think we all share a belief that music has the capacity to do a lot of good in this world, and that's all we intend to do with this show."
LIVE THE ROCK FOR AUTISM BENEFIT FEATURING THE DUNES, THE STARS HERE, AND SEEDY EASE THURSDAY, MAY 29 THE STARLIGHT CLUB, WATERLOO TICKETS, $15 IN ADVANCE OR $20 AT THE DOOR (ALL AGES) 9 P.M. INFO: 519-885-4970 , TEAMTRYSTAN.BLOGSPOT.COM
and Autism Speaks hosted a Researchers Symposium in London last week, our Pediatrician was thrilled to share with us that she was heading off to the Conference. She was really happy to support the Autism Speaks Walk by placing posters in the Hosptial and her office regarding the walk, as she wanted to support Autism Speaks for putting this together:
London Hosts Largest Ever International Autism Research Conference
The International Meeting for Autism Research (IMFAR)
May 15-17, 2008
The 7th Annual International Meeting for Autism Research (IMFAR) has completed day two of the three day conference in London. Over 1,100 researchers, clinicians and autism specialists are presenting at and attending more than 850 presentations. Among the studies being presented are: the evaluation of head growth rate in infants at increased risk for autism; friendship training for adolescents with high functioning autism; the complex interplay of genetic and environmental interactions and a study on household pesticide use; and a modified diagnostic procedure for toddlers, not previously available.
You can get a recap of each day of the conference on the Autism Speaks website through this direct link:
Taline sent the following info regarding the School Boards Class Action Suit:
A few television news segments about the Ontario Court of Appeal hearing for our case which took place in February. The decision will be released within the next month or so. I'd like to thank the Ontario Autism Coalition for placing my CBC interview on YouTube for me.
CBC News LIVE - Taline Sagharian: http://www.youtube.com/watch?v=O159lKjaS4E
CTV News - Lynn Shane & David Baker (in the video section, click on CTV Toronto: John Musselman covers the fight):
CBC News - Karen Robinson:
Also, for those of you who would like more information on our class action case, please see below.
Autism Class Action Lawsuit (Sagharian)
In 2004, five families representing six children with autism filed a class action lawsuit against the Ministry of Education, Ministry of Children and Youth Services, and seven school boards in Ontario for failing to provide or fund ABA/IBI (Applied Behaviour Analysis/Intensive Behavioural Intervention) in the education system or without excessive and detrimental delays.
The plaintiffs have spent their savings, mortgaged and down-sized their homes, borrowed money and taken extra jobs to pay for the services that their children require. They have had to make tough decisions about which services to access when they could not get both.
The case highlights key short-comings of services to children with autism. The families are suing the government and school boards for forcing the families of children with autism to make the impossible choice between the specialized services that help these children develop and their right to a public school education. The families are also challenging the extensive waitlists for the AIP (Autism Intervention Program). The families want to ensure better access to publicly funded and quality services for children with autism in Ontario . They seek a change to the current approach to autism services, as well as compensation for the expenses that they have incurred as a result of the government and school boards’ past errors.
In 2006, the government and school boards brought a motion to strike the plaintiffs’ claim, and in March of 2007 a judge of the Superior Court of Justice, Mr. Justice Maurice Cullity, did strike portions of the claim. In response, the plaintiffs have appealed this decision to the Court of Appeal, which was heard on February 11, 2008. The families are now awaiting the court's decision.
In the aforementioned motion to strike, the government and school boards went after these families for $85,000 in legal costs. Fortunately for the families, Justice Cullity ruled in June 2007 that they should not have to pay these costs because they were raising an important public interest issue. In his decision, he stated:
"The public interest was involved not merely because this was Charter litigation but also because the community as a whole has a legitimate concern and interest in the welfare of disadvantaged children who are particularly vulnerable members of Canadian society.... It is not disputed that many of the parents have made significant financial sacrifices and have suffered serious financial consequences because of the lack of public funding for the programs they consider to be necessary for the educational and social development of their children. The fact that the Crown has now accepted a number of their contentions illustrates the value of this kind of public interest litigation and... the objectives of behavioural modification and access to justice are, I believe, sufficiently engaged to bear on the question of costs."
Autism Program in Ontario
In 1999, the province of Ontario, initially through the Ministry of Community and Social Services and now through the Ministry of Children and Youth Services, introduced the Intensive Early Intervention Program for Children with Autism (the “IEIP”, renamed the Autism Intervention Program "AIP" in August 2006) to provide services to children with autism. Initially, the program was only available to children under the age of six.
Both an Ontario Ombudsman report released in April 2004 and the report of the Office of the Provincial Auditor for Ontario in November 2004 identified several significant problems with the administration of the IEIP, including the difference between what it pays to families and the actual cost of treatment.
When Justice Kitely ruled in Wynberg/Deskin that the IEIP age cut-off violated the Charter’s equality guarantee under section 15(1), the government suspended the age cut-off (as of April 2005). This decision was over-turned by the Court of Appeal. Nevertheless, the IEIP/AIP has operated without discriminating based on age since Justice Kitely’s decision.
Unfortunately, the IEIP/AIP has long had a considerable waitlist that continues to result in eligible children not receiving necessary services. When the age cut-off existed, the waitlist was already so long that children would become ineligible for the program based on their age before ever receiving services. Since the elimination of the age six criterion for cut-off, the waitlists have become much longer, with the result that children with autism continue to be effectively denied necessary care.
The province spends millions of dollars every year on special education. In Ontario , all other children who require therapeutic or medical services are able to access services in a harmonized fashion alongside or with their education. However, when children with autism reach school age, they must either enter a public school system that does not provide adequate education or support, where they will inevitably fail to improve and may regress, or enrol in a private program at considerable expense to their families and without the benefit of an integrated classroom setting. In contrast, children with autism in the United States are able to access ABA/IBI through the education system until the age of 21, and have been doing so for over 15 years.
Following the February 2007 recommendation in the Report of the Ministers’ Autism Spectrum Disorder Reference Group, Education Minister Kathleen Wynne announced that the Ministry would be directing school boards to provide ABA in their schools. This was an acknowledgment by the Minister that ABA was not previously being provided in school, that it could be, and that it should be. However, in a memo to school boards shortly afterwards, the Ministry indicated that ABA was already being used in some schools and that it would not be directing the use of IBI.
Then during the election campaign in the fall of 2007, the Liberal Party included in its party platform document the following promise:
“Helping more students with autism by providing $10 million to prepare schools to deliver IBI therapy on-site for the first time, a step forward made possible by our earlier decision to scrap the age-six limit for children with autism.”
Previous Autism Litigation in Canada
Auton: In 1998, families in British Columbia filed a lawsuit arguing that ABA is a medically necessary treatment and should be covered through the health care system. Although this case succeeded in the two lower courts in BC, it lost at the Supreme Court of Canada . The Supreme Court stated that the government did not have to provide ABA as ABA professionals are not registered health care practitioners and ABA is not delivered in a health care setting such as a hospital. Under provincial health care legislation, ABA could only be included as an add-on health service, in which case it would be at the discretion of the province as to how much it would offer in funding, which children would receive funding, and whether the province would fund the service at all.
Wynberg/Deskin: In Ontario, the Deskin case was filed in 1999 by a single plaintiff. This was followed by the Wynberg case, filed in 2000, which eventually included 28 families. The cases were against the Ministries of Health, Education, and Social Services and were based on the Auton case. The families challenged the age cut-off in the IEIP as discriminating based on age and disability. They argued that the government acted negligently in its design and implementation of the IEIP. They also argued that the government breached their rights to life, liberty and security of the person by denying their children the benefit of an education.
When the 2004 Supreme Court decision in Auton was released, the Ontario cases had to reframe their claims, removing health and refocusing on ABA as an education issue. The Court allowed them to refocus their case, but prevented them from bringing evidence in support of this change in focus.
The Wynberg and Deskin cases succeeded at the trial court but then lost at the Ontario Court of Appeal. In denying their claims, the Court of Appeal specifically noted that it lacked significant evidence relevant to the case, including evidence related to ABA and education. It also stated that it was unfair for the comparatively small group of families participating in the case to get compensation while other families of children with autism languished. The trial judge, Justice Kitely, noted that the government had indicated that the school boards were the proper defendants to the claim and should have been a party. The families sought and were denied leave to appeal to the Supreme Court of Canada .
A Tandem article:
Anger over lack of treatment options
Parents of autistic children say government isn’t doing enough to help
By Simona Giacobbi
“This government should take of children, because they are our future. I’m not superman, I’m just a father, burdened with a child affected by autism.”
Stephan Marinoiu is angry, frustrated and disapapointed. He says that the promises made by the government to shorten or eliminate waiting lists for Intensive Behavioural Intervention (IBI) treatments, which are backlogged until November, and to introduce Applied Behavioural Analysis (ABA) in schools by September, are not enough.
Marinoiu, who has conducted a hunger strike for 10 days as a form of protest, acted as spokesman last week for thousands of parents of autistic children who, like him, feel “betrayed by promises made by government.”
Marinoiu is 49, a diabetic, and has three children, one of whom, 15-year-old Simon, is autistic. “The government needs to act, and stop playing around with the needs of these children ... I’ve written many letters. I’ve received many responses, all very polite, but I’ve gotten nothing concrete for my son. These children have enormous potential if treated today, not tomorrow. They could become self sufficient and more independent. The leaders of the three parties have to work together.”
Of Marinoiu's hunger strike Andrea Horwath, MPP, says, “It’s an extreme gesture. And all this because the government hasn’t been able to adopt appropriate measures after the promises made in September 2003 by Premier Dalton McGuinty, when he promised treatment for autistic children of any age. A McMaster study revealed a new method of treatment for the 9-month-old age group. This shows that children should receive treatment as early as possible. A few days ago minister Matthews asked me to do something to end Stephan’s hunger strike. An ironic request in as much as if you think that it comes from the minister responsible for the problem. ”
There are 10,000 autistic small children, of which 7,000 are enrolled in the school system. It’s a number that represents sacrifice and economic hardship on the part of the families. An online survey by Ontario Autism Coalition, found that 47% of the population has the money for the treatment, 62% has a loan, 11% receive money from charities, while 4.2% declare bankruptcy.
“I’m tired,” says Bruce McIntosh, “tired of broken promises, of inconsistent statements by government authorities. On March 22, Minister Matthews had declared that all issues between families with autistic children and government had been resolved. It doesn’t appear so, else we wouldn’t be here. McGuinty then said that waiting lists would become even longer because the government is making more funds available to finance the treatments ... which doesn’t make sense. Those very politicians who had declared war on poverty are now driving all these families into bankruptcy, forced to get into debt to pay for their children’s treatments.Private treatment costs about $40,000 for 20 hours per week.”
Today, there are 1,100 children on the waiting list for an IBI treatment.
Publication Date: 2008-05-25
Story Location: http://www.tandemnews.com/viewstory.php?storyid=8325
And this was in the Ottawa Sun, a letter to the editor regarding Stefan and his hunger strike:
Hunger strike aims at improving autism services
The Ottawa Citizen
Thursday, May 15, 2008
On May 4, Stephan Marinoiu, the frustrated father of a 15-year-old autistic boy, began a hunger strike outside the Ontario Legislature. He is there 11 days later.
He is frustrated because despite a lawsuit, court decisions, and politically motivated claims to the contrary, our provincial government is not interested in providing appropriate services for autistic children.
This man, like many other families, is financially ruined because he must pay for private services for his child. Soon he will have no money and his child will receive no help. With all our rights, freedoms and financial resources, this man has no other choice but to starve himself in public eye so some one will care about the plight of autistic children.
The public can learn about his cause at the website www.ontarioautismcoalition.com.
As an education consultant and advocate, I see the indifference towards the needs of autistic children on a daily basis. The wait lists are long, and the lack of help offered to autistic children is disgusting. The parents have been begging for help for years to no avail.
The starving father, Stephan, has asked the provincial government:
- to eliminate the waiting list by Nov. 1;
- hire more behavourial therapists in schools;
- regulate the therapists available to families;
- work with the federal government to develop a national autism strategy and get more funding for Ontario.
Enough is enough. Let's end the tragedy of lack of services for children with autism.
© The Ottawa Citizen 2008
From the York Region papers:
Rookie MPP keeping busy
May 2, 2008
It has been a little over a month since the provincial legislature resumed sitting after the abbreviated autumn session.
Sitting in the legislature has been an eye-opening experience for me and I have enjoyed meeting with various residents from around Thornhill on subjects of concern to our community as a whole.
Over the past few months, I have had a variety of roundtable meetings with stakeholder groups representing a broad range of interests from across Thornhill. Such groups include a wide range of ethnically based organizations, ratepayers groups, parents concerned over funding for autism treatment in schools, business organizations, professional associations and the list goes on.
My activities at Queen’s Park have been shaped by the information gathered from those roundtable sessions. I speak in the Legislature regularly about the fact that autistic children have a right to education despite the shameful policies of the McGuinty government. I developed a petition on the need to extend subway service to Vaughan, and another petition on the need to provide more residency spaces to internationally trained medical graduates.
More recently, my efforts have been focused on the subject of the unequal and unfair application of the Smoke Free Ontario Act. There is no such thing as a safe cigarette. It is estimated 37 percent of all cigarette sales in Ontario are illicit. According to a recent study by the Ontario Convenience Store Association, 24 percent of cigarette butts found around schoolyards are contraband. However, the McGuinty government chooses to ignore the sale of contraband cigarettes to minors and instead focuses its attention on law-abiding convenience store owners who, at the end of May, will have to remove “power walls” or face prosecution.
All the while, the illegal sale of tobacco to minors continues unabated and ignored by the premier and the minister of health promotion.
It certainly has been an interesting first six months for me at Queen’s Park. As I look forward to the rest of the term, I encourage all residents of Thornhill to contact my office with any concerns they may have.
this went out on the News Wires from Autism Society of Canada:
Autism Society of Canada
May 13, 2008 08:54 ET
Canadians With Autism Spectrum Disorders Still Waiting for Action
OTTAWA, ONTARIO--(Marketwire - May 13, 2008) - Autism Society Canada urges both the federal and provincial governments to work collaboratively to step up action to provide comprehensive supports, early intervention and more accessible services to families and individuals affected by Autism Spectrum Disorders (ASDs). Health and social policy leaders must take the necessary steps to ensure a seamless system of care and a better understanding of the special needs of children and adults with autism across the lifespan. In far too many cases, Canadians are unable to secure access to effective treatments, targeted health and social services, adequate education supports, and in-home family supports.
As Christine Dade, President of Autism Society Canada says... "Every day, ASC receives numerous requests for help from individuals and families across the country, many of whom are trying to deal with very difficult situations. The onus is continually on the parents and families and people with ASDs. They are expected to know exactly where to go and what to do. They are expected to be able to navigate increasingly complex systems, and to advocate successfully for their own needs in all situations. In too many cases, complex and fragmented systems of care, long waiting lists and lack of resources make this impossible. In addition, there are many" have not" parts of the country that remain severely underserviced when it comes to autism and Aspergers supports. Either way, we continue to fail these individuals and families".
Autism Society Canada has been working for over thirty years to promote a comprehensive federal National Autism Spectrum Disorder Strategy - we feel national leadership and commitment on ASD is absolutely vital in order to bring equal access to targeted health, education and social services for all Canadians with ASDs. There are currently glaring gaps in the availability of fully funded treatment and services for children, youth and adults with ASD. The lifespan needs facing our community are complex and the treatment, service and accommodation needs across the ASD spectrum are multi-faceted.
Autism Society Canada is a nationally incorporated charity founded in 1976. ASC is a federation of Canada-wide provincial and territorial autism societies whose collective memberships represent a very large community of individuals affected by ASD and their families in Canada. ASC is committed to advocacy, public education, information and referral, and the support of its provincial and territorial autism societies.
For more information, please contact
Autism Society Canada
Director of Communications
from the Ministry of Community and Social Services :
May 15, 2008
MORE CHOICE AND FLEXIBILITY FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES
McGuinty Government Moves To Modernize Developmental Services Legislation
Ontario introduced legislation today that, if passed, would lay the groundwork for the province to modernize and improve service delivery for adults with a developmental disability.
Ontario’s current Developmental Services Act is almost 35 years old. During that time, services for people with developmental disabilities have changed dramatically. People who previously would have lived in large, government-run institutions now live and participate in communities across Ontario.
The proposed new legislation recognizes that people with developmental disabilities can live independently with the right supports. It also recognizes that people with developmental disabilities want more choice and control over the supports they receive.
The new legislation would lay the foundation for better services and supports for people with developmental disabilities and their families, including:
• Better service: people would only have to go to one place to apply for services and support.
• More choice: people could receive funding directly for supports tailored to their needs.
• Improved fairness: everyone would use the same application and assessment package, and people who need service and support the most would have priority.
“The current Developmental Services Act is out of date. It’s from a time when we supported people in institutions. A year from now, these facilities from a bygone era will be closed,” said Minister of Community and Social Services Madeleine Meilleur. “This legislation will help us to build the foundation for the next generation of people with a developmental disability.”
“I would like to congratulate the Ontario government for introducing legislation that will bring disability issues into the 21st century. This bill will foster strong partnerships between the Ontario government, families and agencies in order to better serve people with developmental disabilities and provide them with a brighter future," said Executive Director of Reena Sandy Keshen.
• More than 40,000 adults with a developmental disability live in Ontario.
• Since 2003, the Ontario government has committed an additional half billion dollars for services for people with developmental disabilities.
• The total annual budget for developmental services is $1.57 billion.
• In 1974, at the height of institutionalization, there were approximately 8,000 people with a developmental disability living in government-operated facilities. Today, there are fewer than 180 adults living in the three remaining facilities which are set to close in 2009.
• Read the history of developmental services in Ontario. It goes back more than 100 years.
• Learn more about the major changes Ontario is making to improve services for people with a developmental disability.
• Read real life community stories about people with a developmental disability.
Julia Sakas, Minister’s Office, 416-325-5219
Erika Botond, Communications Branch, 416-325-5760
This from the Sarnia area, for those living in that area to be aware of this funding opportunity for you:
Respite program for parents of autistic kids offered again; MINISTRY OF CHILD AND YOUTH SERVICES HAS GIVEN $64,000 TO LOCAL SOCIAL AGENCY
May 17, 2008
By Shawn Jeffords
A popular program designed to give parents with autistic children a break from their hectic lives will return this year.
Families can now apply for a portion of $64,000 given to the Family Counselling Centre by the Ministry of Child and Youth Services.
Cheryl Dart, programs and services director for the Sarnia-Lambton chapter of Autism Ontario, said the program helps relieve stress and teaches autistic children new skills.
"It's a much needed support for the families," Dart said. "For high functioning individuals it helps them build social skills. For the parents it gives them a chance to rest or have one-on-one time with their other children, something they don't often have."
Leah Proctor, of the Family Counselling Centre, said the program launched successfully last year. In order to get the funding the centre had to entice 33 families to take part. In the end, 53 families applied and were granted funding.
"We're anticipating that there will be more families who come forward this year," Proctor said.
The respite program funding will be added to any financial support families are currently accessing, Dart said.
Parents can use the money to purchase respite services from a local provider or from an individual recruited by the family.
Parents have until Friday, May 30 at 5 p.m. to apply.
Applications must include documents supporting an autism spectrum disorder diagnosis.
Application forms are available at the Family Counselling Centre, Autism Ontario, St. Clair Child and Youth, Pathways, and Community Living.
from the Belleville paper:
Family ready to help others dealing with autism
Posted By Janet Richards
Updated 2 days ago
Belleville – What started last year as one couple's event to raise money in support of their son has expanded into a community effort to help other families dealing with autism.
Last summer Belleville's Daniella Barsotti and her husband, local radio personality Tommy James, held a car wash to help raise funds for an intensive program for their eight-year-old son Adam, who has autism.
With only $4,800 left to pay on slightly more than $16,000 (US) the couple needed for the program, Barsotti said this year the car wash will start to collect funds to help other families make use of the program that finally seems to be working with her son.
Adam has told Barsotti that he wants to go back to school next year and she and James are ready to let him try.
“We grew so much this year, it's incredible,” Barsotti said.
She credits the Son-Rise program with teaching her to listen to her son, to learn how to reach him and to know where he's coming from.
Barsotti and James gave up government funding for Adam to try the Son-Rise program taught by the Autism Treatment Center of America, and they would like to give other families a chance to try the program out.
Barsotti said there is often a waiting list families who want to try “traditional” government-funded programs.
“If you want to try this program, we will help you,” Barsotti said, referring to the one-week start up program for Son-Rise. “These people have such amazing ideas.”
She said just sitting in a room with 100 other parents who are going through similar or even worse things provides a great forum for sharing information and ideas. Barsotti said she is not against government-funded programs, such as ABA or IBI, but they did not work for Adam.
Barsotti has already filed the paperwork to have Adam's Hope registered as a charity.
“I think every child, no matter what your disability, has hope,” Barsotti said. “That's why it's called Adam's Hope.”
After raising funds to take Adam to a family-intensive weeklong program at the Autism Center of America this October, Barsotti said she and James wanted to share the opportunity.
“Tom said he'd feel bad if we only did it for Adam,” Barsotti said, adding, “This feeling is better than when I was raising it for him.”
Barsotti said she realizes she can't save the world, so the organization will focus on helping Quinte-area residents. In addition to helping fund parents and family members, the organization would provide funding for individuals, such as those who volunteer with autistic children to go to the program to be trained.
This year's car wash for Adam's Hope takes place May 31 with a rain date of June 7. It won't, however, be your traditional car wash.
Barsotti said that when people hear about the cause, they want to help and the car wash has turned into a community event of sorts with various people volunteering their time, including a group that dresses as Star Wars characters that is travelling from Toronto and will be offering photos with the characters. One of the members is the husband of a volunteer who works with Adam and wanted to help the cause.
“It's not something you see every day and it certainly draws attention,” Barsotti said.
With another volunteer taking care of posters and yet another offering to provide music, Barsotti said the car wash is turning into “something everyone has built.”
She said anyone interested in attending the Son-Rise start-up program can pick when they would like to go and there are lots of dates available. Partial and full scholarships are also sometimes available.
“I'm not going to be surprised if people are hesitant,” Barsotti said. “No doctor is going to tell you to do that.”
She would, however, like to present the opportunity, even if it is to those on waiting lists for government-funded programs.
“We want to tell people, 'just go and try it'. If it's not for you, that's fine, at least you tried.”
The car wash will take place at Like NU Auto at 444 Dundas St. West. Beginning at 9 a.m. it runs “until the last clean car drives off.”
Another York Region article:
Hillary House helps give autistic youth job placements
Catherine Molloy shows artifacts at Hillary House. The Aurora landmark also helps the community by providing youth with autism with jobs. STAFF PHOTO/MIKE BARRETT
May 20, 2008 01:04 PM
Faces & Places
By: Simone Joseph
Christopher Willard chooses a small, blue antique chair and sinks his tall, lanky frame into it.
It gives him a slightly comical look, rather like a giant squished into an elf’s chair.
But then, that is Chris, the life of the party and a chatterbox.
He works alongside Richard O’Donnell at the historic and picturesque Hillary House.
Mr. Willard, a 20-year-old Grade 12 student and Mr. O’Donnell, who is in Grade 10, are both high school students at Aurora High School, nearing the end of their workterm. The young men both have autism.
“They both enjoy coming here,” said Dennis Gould, the educational assistant with the York Region District School Board who accompanies the students. “They get pretty ramped up. It gives them a sense of pride.”
The pair works Tuesday mornings.
They are both in a community class at the high school and will earn a certificate of completion rather than a diploma.
Having autism affects a person’s ability to concentrate. A person with autism can only focus for a certain length of time and will need to constantly switch tasks.
Mr. O’Donnell is non-verbal and only answers specific questions. Mr. Willard is very verbal.
“He is very expressive. He does not hold back,” Mr. Gould said.
The aim of this program is to get Mr. Willard and Mr. O’Donnell working with others, following instructions and, later on, moving to other community-based programs.
Mr. Willard waves his arms around and moves his body back and forth, apparently nervous around a new person.
What does he like about coming to Hillary House?
“It is fun. It is cool,” he says, later admitting he likes his work placement better than school.
The placement ends in mid June.
Mr. Willard enjoys hockey, playing on two teams and his favourite movie is Garfield.
“Everyone is going to miss Chris. He is the life of the party. Chris has a personality where he keeps you laughing the whole time. He is always in high spirits,” Mr. Gould said.
Mr. Willard and Mr. O’Donnell water plants, dust furniture, mop floors and do gardening outside. Mr. O’Donnell is “extremely capable” and takes direction well, said Joan Patterson, a volunteer at Hillary House who also runs the gift shop along with other tasks.
Just as these two young men have learned quite a lot, they have taught those around them quite a lot, too.
If you come into work in a bad mood, you cannot stay that way for more than 10 minutes, Mr. Gould said.
One of the huge strides the pair has made is they are both able to take blue boxes and trash to the end of the driveway, right near busy Yonge Street.
This from the Halton Region Autism Ontario Chapter:
"The Development of a Fast and Objective Screening Tool for Early Autism"
With Dr. Mel Rutherford of McMaster University:
Wednesday, May 29th at 7:00 pm
Theatre Burlington, Drama Centre
2311 New Street, Burlington
The same talk was recently given at the IMFAR...
For flier below to print out and distribute/post, please see...
For more about Dr. Rutherford & the Early Autism Study, please see...
And in regards to this announcement, the Toronto Star printed the following article with a file copy of a photo, the Sagharian family:
Early autism detection offers treatment hope
TONY BOCK/TORONTO STAR
New technology to test infants for autism offers hope of early detection and treatment for families like the Sagharians, shown here in a Toronto Star file photo. Christopher, 10, has autism.
New technology tracks infants' eye movements while they look at faces, says lead researcher
May 16, 2008
A new technology could detect autism in children as young as 9 months, more than a year earlier than current diagnostic tests, according to researchers at McMaster University.
The tool tracks children's eye motions while they look at faces, eyes and moving dots on a computer screen – tasks that provide an early measure of babies' social development, according to lead researcher Mel Rutherford, associate professor of psychology at the university. Babies whose gazes didn't focus on eyes or faces were more likely to be diagnosed with autism as toddlers, using traditional methods, the study found. The signs first appeared around six months, but weren't statistically significant until three months later.
The eye-tracking test would mark the first objective method to diagnose autism, a spectrum of disorders that affect about 200,000 Canadians, according to Autism Society Canada.
No medical tests can detect autism, which is diagnosed based on the observation of specific characteristics, such as limited social interaction, impaired communication, and ritualistic behaviours. As it is, the earliest reliable tests are administered around age 2, but most children in Ontario are diagnosed later, Rutherford said.
"We wanted to find a way to measure social interaction objectively, without any clinical or subjective judgment," she said yesterday.
The study tested 45 infants, split into two groups: Those with siblings who have autism, and those with no family history of the disorder. They were examined every three months for the first year of their lives, then screening using conventional methods at age 2. Those whose siblings have autism were more likely to show signs of it as well, and three received autism diagnoses, she said.
The test, which takes approximately 10 minutes, can be done by a technician, allowing more children to be screened, Rutherford said. The technology could become widely available within a few years, she said.
That would be welcome news for the hundreds of parents who suspect their infant may have autism, said Laurie Pearce, vice-president of Autism Ontario's Toronto chapter, whose 13-year-old son Devon was diagnosed at age 4.
"I talk to so many parents who feel something's wrong, but who get screening put off by their doctors," she said.
"To get a diagnosis, you need a clinical psychologist, and there are only so many."
Still, the tool raises issues for parents when it comes to treating the disorder after it has been detected. Resources for families affected by autism are already scarce, Pearce said.
And while studies have shown that early treatment leads to a better prognosis, no one has started this early before.
"I'm not sure what programs there are for a 9-month-old," she said, adding that most treatment focuses on behaviour modification.
That fact hasn't escaped Rutherford, who said that treatment for diagnosed infants "is still an open question."
And this opinion letter from the Hamilton Spectator on this topic;
Children with autism need more support
May 17, 2008
THE HAMILTON SPECTATOR
(May 17, 2008)
Re: 'Mac test may catch autism earlier' and 'Detecting autism in babies may aid progress' (both May 15)
As the parent of a child with autism, I find these two articles misleading
Parents who are struggling with the diagnosis of autism need to know how important it is to act immediately on their concerns, because if parents cannot afford private therapy, the waitlist for government funded Intensive Behavioural Intervention (IBI) takes years
My son was diagnosed at 18 months and we are still waiting for government funding. He will be four this September
Although a good day-care is the first step in intervention, it is equally critical to have other government funded programs readily available (i.e. social and communication, play therapy, and basic functional skills groups) All these interventions would be very beneficial if only the government would support our children with autism appropriately.
This came from the AFA list:
Monday, June 16, 2008
YORK REGION AND SIMCOE COUNTY -
The Children's Treatment Network of Simcoe York is offering a
FREE Symposium for Parents and Families with Special Needs.
There is a parent workshop and one of the features is LINDSAY MOIR, highly acclaimed Special Education Consultant.
In order to support as many families as possible to attend, the Network will provide an $80.00 daycare subsidy. You will receive the $80.00 per family the same day as the Symposium. You do not need to submit a receipt to receive the subsidy.
For more information please see flyer attached.
Register Now/Space is Limited
And an article from Lindsay Moir from last week, this is of interest for those trying to decide between the Separate School and Public School Systems for their Special Needs children:
Ask Lindsay Moir:
Providing education assistance at faith-based schools
Friday, May 16, 2008
This "question" is actually an attempt to answer a simple question through a phone call and discussion, right through to resolution.
The original question was :
"Our family is quite religious and we like many of the aspects of the Catholic (Separate) school system such as prayer, moral teaching and the influence of religion on school life. WE ARE NOT CATHOLIC.
Recently, we found that several (non-Catholic) members of our church community have had their children accepted at the local catholic elementary school. We live in a small town and both our public and separate schools have low enrollment and have been through 'enrollment studies' to determine their feasibility.
We went in February to enroll our son for JK at the local catholic elementary school and when the school secretary found out that he had special needs, she refused to give us an enrollment package, citing 'board policy.' Can a board have such a policy?"
This certainly seemed a straight-forward matter, so I called with the text-book answer:
"Since you do not have the right to attend a a Catholic elementary school (neither parent is Catholic) then you are asking the board if they will accept your child and they have the right to accept or refuse your application."
I went on to say that I believed that the family had the right to an enrollment package and that this placement decision should be made by someone other than the school secretary! I advised the family to speak directly to the principal. I pretty well thought I was finished with this question.
When the Mom spoke to the principal, she seemed open to the idea of enrolling non-Catholic children and explained that all children would have to take "preparation for the sacrements" but that individual families were free to decide if their child would actually take the sacrements in the Catholic church, or would take the knowledge back to their own family church.
She admitted that it was a kind of a "numbers game" and that the non-Catholic children were vital to meeting the enrollment targets to keep the school open. The principal then suggested a meeting with the Superintendent because there was the question of "extra support" for their exceptional child.
When the family met with the Superintendent they sensed a willingness to "consider" their child. They were not simply told "NO." The Superintendent asked a lot of questions about what support would be required, transportation needs and other questions that made them feel that there was a chance! The Superintendent promised to get back to them in a week. The family was hopeful.
The Superintendent did call and "expressed regret" that she could not make a decision at this time, until they could determine what resources would be assigned to the school, based on the other students enrolled there. Basically, "if the other kids generated enough support to cover your child, then we will accept him." The parents struggled with this logic, and called me.
In a three way telephone call (family-Superintendent-me) I really did sense that the Superintendent wanted to find a way to make it happen. She assured us that she was doing everything possible to "move things forward". She was not willing to commit to using volunteer support — because if it fell through, the board would be "left holding the bag for a kid who was not really their obligation". Frankly, it was one of those meetings where everyone was on the same page, but no decision was made.
They decided to talk their pastor and see if perhaps their church might help with the cost of an EA. Citing a recent addition, the pastor said that was fiscally impossible to commit to.... but he did say he would call the local Catholic parish priest. ( a nice gesture, I thought?)
Two days later, I received a call from the parish priest with many questions on funding, attendance rights, the Education Act and much much more! He told me he was meeting with the family's pastor that afternoon.
The next week, the family received a call from the principal who said "after lengthy consideration the board had agreed to enroll their son at the Catholic elementary school for September." When doing the paper work the Mom chatted with the principal and ellicited the following:
• the decision to enroll had come from the Director to the Superintendent
• the Superintendent was not sure how this case got to the Director
• the decision was based on the Catholic church's mission to serve ALL of God's children, not
just the able ones
Now I am not sure of exactly what happened, but I suspect that the parish priest had "something" to do with it!
The key factors in this case were:
• parental persistence — they didn't go away!
• educators who were open doing the "unusual" attitudes
• and a conversation between a pastor and a priest!
I guess that even things that seem to be "throw-aways" can be the very thing that turns a situation around. Never discount a suggestion, that at first glance seemed like a waste of time. Pursue all avenues of resolution simultaneously — solutions can come from the most insignificant places.
As school enrollments across the province continue to decline and we have a funding formula that funds boards based primarily on students enrolled, there is an emerging willingness to move beyond the "old way of doing business." Boards are no longer locked into "meeting our mandate" thinking. More non-Catholics are being accepted into Catholic elementary schools, while the schools work to maintain the Catholicity of the learning environment. (This is NOT an issue in Catholic high schools, since they must accept Catholics and non-Catholics.) It is encouraging to see that while the system had become willing to accept typical non-Catholic children, and that in this case the same response was extended to an exceptional child.
And a request for participants in this students research project:
Subject: Research participants needed
Date: Fri, 16 May 2008 16:09:54 +0000
Please forward this information to your contacts.
Hello, my name is Rosemary Romeo and I am a Masters of Social Work student at Ryerson University. As part of my degree, I am expected to complete a major research paper. I am exploring parental attitudes and perceptions of disability and how these attitudes and perceptions may play out in parent-child interaction. For this research, I am seeking to talk to parents of children 18 years of age or younger with a disability. I hope to gain some insights into parents’ attitudes and perceptions about disability and their interactions with their children. You will be asked to participate in a thirty minute to one hour interview session at a mutually agreed upon meeting location. Participation is voluntary and your information will be kept confidential. For your participation you will be paid $20 Canadian. Please note that the agencies or services where you heard about this project and with whom you may be affiliated with, will not have knowledge of your participation or non participation.
If you are interested please contact me at rromeo@rye r son.ca .
Last month I shared about an article in Redbook Magazine, here is the article for all to read if you didn't get a copy of the magazine:
see attachment for clearer text
What Autism Does to a Mother
By Nancy Rones
Nicole Kalkowski knows that beyond the stress, fear, and family turmoil that come with learning that your child has this devastating disorder, there is also a devastating aloneness. In our second installment of Living With Autism, we follow this mother of three as she struggles to save her son and finds help — for her children and for herself — in unexpected places. In part one of REDBOOK's series about raising a child with autism, Nicole Kalkowski and her family were overcome with shock and confusion when their outgoing and vivacious toddler, Ryan, began to lose his language and social skills; his sudden problems with speech and disinterest in hugs from his sisters were just the start of his perplexing symptoms. After an agonizing search for answers, Nicole and her husband, Tim, discovered that Ryan, now 3, has what many call regressive autism — he appeared to be developing normally, but began to backslide at 17 months. In this installment, we witness the painful toll Ryan's condition has taken on Nicole and follow her and her Las Vegas family as they navigate the murky waters of treatment.
On a Sunday morning in September, about 30 parish-ioners squeeze into a small room located just off the main sanctuary in Faith Lutheran Community Church. Nicole Kalkowski and her family have been active members of the church for the past five years. And today, the congregants have gathered to pray for Nicole's son, Ryan.
Nicole sits on a small altar with daughters Ciera, 8, and Ella, 6, huddled together on her lap. The 35-year-old mom wishes her husband, Tim, could be with her, but the couple agreed that it would be best for him to stay home with Ryan, who, in a packed church, would have been screaming and crying inconsolably. Slowly, the church members begin to hold hands and form a circle around Nicole and her girls. Most people have tears in their eyes.
No longer able to keep her composure, Nicole starts sobbing. As she wipes away her tears, everyone bows heads and listens as Bible passages are read. Then, a teacher at the church school presents Ciera and Ella with a book of prayers created by their classmates.
As the vigil ends, the well-wishers hug Nicole and her daughters. Ciera's eyes well up as she whispers to her mom, "Ryan is really special."
"My days were filled with silence"
Given all the anxiety and heartbreak they had endured in the past year since Ryan's development regressed, the Kalkowskis — Nicole in particular — were in sore need of this kind of support. Thanks to Ryan's erratic behavior and demanding therapy schedule, which would devour large chunks of her time every day, as well as her own deep sadness and reluctance to lean on others, Nicole was leading an increasingly and painfully isolated existence.
Typically, Nicole's social life would flourish in September when her girls returned to school. Her calendar was always packed with playdates, volunteer work, and plans to meet other moms for coffee. But Ryan's fierce tantrums in public places — even just on quick errands to Target — crushed any return to normalcy. Before summer break, she chatted happily with other moms at school drop-off. Now, she preferred to be invisible on school grounds.
"Friends didn't know how to react," says Nicole. "In passing, I was constantly asked, 'How are you doing?' I dreaded this question. 'Fine,' was a lie, and I needed more than 10 seconds to really answer. And I didn't want to break down in front of the girls anyway. So I'd walk into school with big, dark sunglasses on and leave quickly to avoid conversation. In the car, the tears poured out."
Gone, too, was the weekly playgroup Nicole hosted at her house for church friends and their kids. Like many children with autism, Ryan has heightened sensitivities to strangers as well as to noisy environments; these factors either set off screaming and crying fits or caused him to hide. Nicole knew that the playgroup would be uncomfortable, possibly intolerable, for her son. "I didn't want people looking at Ryan acting up and thinking, Wow, that's really awful," she says. "I was protective of my son and didn't want him to be judged." Sometimes when visitors came over, Ryan retreated to his parents' bedroom upstairs, pulling Nicole with him. "I'd have a family over for a barbecue and instead of socializing, I hid in my bedroom with Ryan," says Nicole. "If I tried to leave the room, he'd get mad and push me back in."
While a few friends hung in there, the phone calls from others faded. "Life went on for them," says Nicole. "But without the phone ringing, and without being able to run errands because of Ryan's behavior, my days were filled with silence." Nicole often cried to her husband, Tim, about the loneliness. Tim, 38, who owns a contracting business, realized how suffocating the situation was for his wife. "I had work as an escape," he says. "But autism was every minute of Nicole's day."
A part of Nicole simply shut down. "I did put up a wall," she says. "When someone reached out, I didn't jump. I just felt like, 'There's nothing anyone can do to fix this.'"
"I kept turning down help"
After the prayer vigil, Nicole's "wall" began to crack. "I felt so cared for during the vigil, which was very healing," she says. But it was a new friend, Sue Stigler, who finally convinced Nicole to truly drop her defenses.
Sue and Nicole were in the same social circle at church, but they weren't close. So it surprised Nicole when the 41-year-old mom, who has a son Ryan's age, took on the role of best friend. Sue began showing up at her door throughout the summer wanting to help — she stopped by with uplifting greeting cards, cookies, chocolate, and offers to shop for groceries and even to clean Nicole's house. "I kept turning her down," says Nicole. "I wanted help, but I felt like I was drowning in everything I needed."
Sue persisted, and even packed Nicole's suitcase for a family trip to Laguna Beach, CA, with Tim's friends and their families. Nicole had contemplated canceling the vacation because going away with Ryan seemed too hard. But Sue convinced her that it would be a good chance for the family to have some fun. "I'm so glad Sue pushed us to go," says Nicole. "I bonded with the wives of Tim's friends, who were very understanding on the trip — probably because they got a chance to see all my day-to-day challenges firsthand."
The following month, Nicole finally felt comfortable enough to ask Sue for a favor. Every day, Nicole drove by a park near her house, a place she used to go with other moms but had been avoiding recently because she knew Ryan wouldn't react well to all the activity. She missed being there. Hesitantly, Nicole asked Sue if she'd be open to playdates at the park every Monday with their sons. Sue was happy to oblige. "When I worried that Ryan would scream the whole time, Sue said, 'Oh, please. Like my son isn't going to scream. They're 2 years old.' Sue's so lighthearted and doesn't make it seem like Ryan is so much different from her son," Nicole says. "She's helped me laugh more, and just makes me feel like a normal mom."
Nicole is also grateful to Sue for the gift she gave Ryan — a friend of his own. "One big fear any mother in my situation has is that her child won't have friends," she says. "After a couple of playdates, Evan would climb into his car seat as he and Sue were getting ready to leave and say, 'Ryan, you my friend.' It touches me every time I hear that.
"I realized that there are people who really do want to help; you just have to let them know that they can."
"I worried that Ryan was headed for severe autism"
Mondays with Sue provided some reprieve from Nicole's demanding schedule, but she continued to spend hours each day doing therapies with Ryan. Some were techniques that she'd learned from the Nevada Bureau of Early Intervention Services (NEIS) coach. The coach had been coming to the house for the past few weeks to work with Ryan and to show Nicole and Tim how to do certain behavioral therapies, such as "heavy work," in which Nicole would have Ryan walk wheelbarrow-style or play with a weighted ball in order to help him adjust to various sensations.
After reading the book Engaging Autism
, Nicole also tried what's known as Floortime — a method that would later be used in Ryan's occupational therapy sessions. Floortime focuses on helping a child with autism engage in back-and-forth communication — a skill that many children with this disorder lack. With this form of therapeutic play, a parent will join in on an activity that the child is already interested in. For instance, if he's rolling his toy car over a chair, you might grab another toy car and come around from the other side and bump yours into his, so that the two of you interact. (For more information on treatments, see "3 Perspectives on Treating Autism")
While Nicole remained hopeful that Ryan would make substantial leaps in progress once his speech and occupational therapy (OT) sessions began at the end of September, she continued to trawl the Internet and read books to uncover more treatment options. Her research turned up a promising approach: one-on-one, in-home applied behavior analysis (ABA) — a widely used technique that's supported by years of research studies. She'd need to hire a tutor who would then be trained by a consultant versed in the method of ABA she'd chosen (known as Lovaas), and the wait to start that training was three months. Nicole put Ryan on the waiting list.
When Ryan's speech and OT sessions finally got started, Nicole's feelings of hope were quickly dashed. The seasoned therapists weren't having much success in getting through to him; Ryan screamed throughout the sessions and became hyperactive, as if someone had flicked a switch. "I assumed that as soon as therapy got under way, progress would happen like magic," says Nicole. "So when his therapists were telling me they weren't sure how to help him, it was scary. I really worried that Ryan was headed for severe autism."
Desperately seeking a treatment that Ryan would respond to, Nicole found the Talk About Curing Autism website; actress Jenny McCarthy, who has a 6-year-old son with autism, is the organization's spokesperson. "With tears running down my face, I watched a video on the site about kids who had regressed and were recovering, some to the point of being considered 'typical' children again," says Nicole. "It made me believe recovery was possible for Ryan."
Delving deeper into the site, she read about a gluten-free, casein-free (GFCF) diet that improved symptoms in some kids. Removing gluten meant cutting out grains such as wheat, barley, and oats; eliminating casein amounted to avoiding all dairy products. Nicole thought, There is no way. Ryan had so many aversions to food textures, and she was scared to narrow his already limited diet. But a couple of weeks later, she found herself glued to McCarthy's appearance on Oprah. McCarthy talked about her son's treatment and recovery, part of which she attributed to the GFCF diet. "In momspeak, she broke down the idea of the diet — getting rid of toxins in the body and putting in what it needs — and it made sense," says Nicole. Immediately after, Nicole headed to the bookstore, where she sat on the floor and raced through McCarthy's book Louder Than Words to find out more.
Nicole was sold. That night, she went to Whole Foods, searching for packaged foods labeled "gluten-free, dairy-free" that she could gradually introduce into Ryan's diet. "I was in the supermarket for such a long time, reading all the labels," says Nicole. "Besides worrying about the ingredients, I was also trying to find gluten-free versions of foods that Ryan was already eating, like crackers and pasta, to make the transition easier." Surprisingly, Ryan ate many of the foods that Nicole brought home, like rice pasta and dried blueberries. But she also had her share of flops. "It's always trial and error, which can be frustrating because the foods are expensive."
Inspired by McCarthy, Nicole also met with a Defeat Autism Now! (DAN!) doctor, a health-care practitioner who uncovers the physiological conditions that may be causing autistic behaviors and then treats them through nutritional changes, including a GFCF diet (a DAN! practitioner's credentials can range from a traditional M.D. to homeopathy training ). At Nicole's meeting, Geoffrey P. Radoff, an M.D. and doctor of homeopathy (M.D.H.), took an extensive family history, provided a list of lab tests (blood, urine, and stool) for Ryan to undergo, prescribed a variety of nutritional supplements, and instructed the Kalkowskis to stick with the GFCF diet. Radoff made no promises to Nicole about Ryan's improvement, except that the diet would likely relieve her son's gastro-intestinal problems -- a common issue in children with autism. Ryan's belly was always very gassy and bloated, and he'd often push on his lower abdomen in discomfort. Nicole was thrilled just to have another treatment begin.
But that optimism didn't compare to the joy that Nicole and Tim felt about three weeks after Ryan started his therapies and new diet. Standing in their kitchen, Tim was consoling Nicole, who was crying after having a particularly stressful day. When they looked over to Ryan in the next room, their son, who during the last couple of months had stopped making eye contact and rarely interacted with his parents, was staring straight at them. Ryan then picked up a toy school bus and ran it over to his mother and father with a smile. "We were both amazed, and Tim and I looked at each other like, Did that just happen?" recalls Nicole. "You're scared to see progress because you don't want to lose it again. After a few minutes, I even took a picture of Ryan, so that I could remember that moment."
In the days that followed, Ryan had more breakthroughs. His once-empty eyes gained some spark. His "fisted" hands opened and he began feeding himself again. At his OT and speech sessions, he used new words, such as "go" and "fun," gave big smiles, and was responding to the therapists. "There's still plenty of work to do, but Ryan is making fast progress," says Beverly Burnett, an occupational therapist who owns Play and Learn Pediatric Occupational Therapy Center in Las Vegas, where she works with Ryan.
Ryan's string of successes had his sisters particularly overjoyed — especially since their adorable little brother began joining them again at night for a story and cuddling, a routine he'd cut off a year and a half earlier.
"I am determined to save my little boy"
Ryan's accomplishments made Nicole eager to meet other mothers to compare notes about treatments. "Once your child shows one sign of hope, you're hooked and you get even more committed," Nicole explains. She got in touch with Families for Early Autism Treatment, and in early November, she, Tim, and their kids attended a picnic that was hosted by the organization. While Nicole appreciated talking to other moms about which treatments worked for them, she felt that it was her daughters, Ciera and Ella, who probably benefited the most from the event. "It was good for them to see that they aren't the only siblings in the world who deal with autism," says Nicole.
A month later, Nicole saw information about a Walk Now for Autism event and jumped at the chance to form her own team. In less than a week, she recruited 30 friends and family members, who raised more than $2,000 for autism. At the walk, Nicole received new information about local treatment providers — plus, a discussion with one of the walk's organizers about the therapies Ryan was getting prompted Nicole to repeat her requests for more hours from NEIS. That request was granted, and as a result, Ryan also joined a weekly NEIS playgroup where he can interact with typical kids.
The highlights of the day didn't end there. Nicole and her family met two celebrity moms who each have a child with autism: Jenny McCarthy and singer Toni Braxton. "It was a surreal moment for me," says Nicole. "I had the chance to tell Jenny how much she touched my heart when I needed hope so desperately. I told her that her book helped save my son, and that it started a fire in me to fight for him. Jenny actually choked up while she was listening to me. It wasn't about meeting a celebrity for me; it was bigger than that. The whole walk filled me with such positive feelings. Looking around at all the people who turned out on a cold, windy day to fight autism was so hopeful and uplifting for me. I realized that sitting at home being depressed was useless; the walk brought me to a new place, and it reinforced my determination to save my little boy."
Look for the next installment of Living With Autism in the July issue of REDBOOK.
Charities compete for resources
Posted 1 day ago
By SHAWN JEFFORDS
Sarnia-Lambton’s charities and non-profit agencies are “cannibalizing” each other by competing for scarce resources and need to form new alliances to deliver services.
So says CEO Kevin Smith of Goodwill Industries, whose organization marks the first anniversary of a pilot partnership with Autism Ontario’s Sarnia-Lambton Chapter.
Goodwill came to the rescue of the smaller non-profit last spring after it lost its home and couldn’t afford to rent new space. One year later, both groups are thriving.
“Sarnia is such a small community (and) all of the non-profits are fighting for the same dollars,” Smith said. “We’re cannibalizing one another. Sometimes you have five or six (charity) walks going on on the same day.”
For agencies to survive they need to find common ground, he said. Goodwill and the Autism Ontario chapter each shoulder some administrative costs and use their community contacts to upgrade the shared office space on Palmerston Street.
“It’s a win-win situation,” said Cheryl Dart, Autism Ontario’s local program services director. “It’s helped us save money on administrative costs. We can then put more of that cash towards services.”
Money saved has helped create a new program that subsidizes visits by a family consultant. The worker provides strategies to help the autistic child and family cope with the brain disorder.
“Many of our families are in crisis and this is an important program,” Dart said.
Smaller charities might be fearful of being swallowed by larger partners, Smith said.
“It’s very important that all groups involved have their own identities. All we’re asking is to share common costs. The concept is about the bricks and mortar.”
Smith pointed to the Dow Centre planned to house Rebound, Big Brothers and Big Sisters as a workable model. He envisions a centre that would house “five or six like-minded groups” with an adult social services bent.
“I just think we should look at the possibilities and see if there is the will to make it happen,” Smith said.
Copyright © 2008 The Sarnia Observer
From a Listmate
During the last few weeks in my role as Deputy Minister for Health and
Social Services, I've been able to announce two innovative and exciting
May 22 2008 by Rachael Misstear, Neath Guardian
In April, I was able to announce a new, wide-ranging strategy to tackle
autism and improve services for those who are affected by the condition.
An increasing number of people are being diagnosed with Autism in Wales
and there is a need to improve the provision that is available for
children, young people and adults with ASD.
Wales is the first country in the world to have established a
cross-cutting national strategic action plan for ASD that will help the
estimated 30,000 people that are either directly or indirectly affected
by Autism in Wales. The Action Plan will drive improvements across both
children, young people's and adult services in health, social services
and education services - and also expand into areas of housing, leisure
and society in general, and is yet another 'World first' for Wales.
Autism disorder takes the spotlight at Martingrove
May 20, 2008 10:54 AM
A lesser known form of autism- Aspergers syndrome -took full spotlight at Martingrove Collegiate's auditorium on Thursday, May 15.
One of the reasons why Aspergers has received little attention is that only few kids are diagnosed with it, compared to other autistic disorders.
"There are less children who have Aspergers syndrome compared to (different types of) autism so maybe it gets less attention at this point," said supervised practice Psychologist Jonathan Weiss. "But, I think it's just a matter of time before people understand Aspergers syndrome."
Weiss was one presenter during the information night on the disorder, organized by local mom Dianne Leask.
Weiss underlined in his presentation that people with Aspergers syndrome share three common symptoms that involve challenges in social interaction, difficulties in being flexible in their interests and behaviour, and difficulty in sending and receiving communication.
Weiss rejects theories that parenting skills are a factor in the development of Aspergers in children.
"One thing that is a common misconception about Aspergers syndrome is that it's caused by poor parenting. We know that it's really not related to bad parents and that's something important to get across," said Weiss.
He hopes the awareness brought from this event will further direct educators, parents, and community service providers towards best supporting the needs of each person with this diagnosis.
Weiss knows that each person with Aspergers requires different types of attention.
"We need to be responsive to the needs of the individual person and we need to keep communicating about that because needs change over time," he said
Laurie Pearce, VP, Chapter Leadership Council with Autism Ontario, shares this concern and says many students with Aspergers are about to finish high school. She feels there is more stress for kids with Aspergers in the teenage years, partly because it's a less defined diagnosis.
"I guess the perception is that they don't need (special attention) because they are high functioning, but that's not the case," said Pearce.
Pearce is also concerned about where some of these kids will be following high school. She feels that some students with Aspergers have the capabilities to succeed to colleges and universities while others have challenges knowing where to go after.
This stage is where it's most critical for these students to build social networks, because some will need to find employers that are willing to accommodate their needs and abilities. Breaking free of common routine also makes this transition difficult, according to Pearce.
"A lot of parents have told me about the challenge of the end of school. People on the (Aspergers) spectrum tend to like structure and predictability," said Pearce.
However, Pearce feels that with new maturity they can develop self-control.
She was encouraged by the number of parents who attended the information night but knows that there are many who were unable to come.
"The vast majority of people that come out to this are already on the path to getting help. I always worry about the ones who are at home because they couldn't leave their child to come to an event like this."
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