Saturday, August 28, 2010

Greg Sorbara offensive suggestion

Tell Greg Sorbara his suggestion for aggressive autistic teen is offensive! is a new facebook group. Story behind it is very sad and very indicative of how our society is unprepared on every level for the wave of entire generation of autistic teenagers and young adults.
Here is description of the group from the website:
Greg Sorbara, MPP for Vaughan-King-Aurora and the former provincial Minister of Finance, told the mother of an aggressive autistic teen that his only suggestion for how to get him the treatment he so desperately needs is to have him charged in the hopes that a judge will issue a court order. The suggestion is outrageous and offensive. Please take time to contact his office and express your views.
I think that Greg Sorbara represents very well an attitude of our government towards autism. Most government officials are male over the certain age, and they have never heard about autism when they were young, and are just learning about autism from news, or letters of their voters, and are completely stumped by it. They do not understand it. They have no clue what it is and how can it effect individuals and society in general. Can autism help their political carriers? Maybe. But it is difficult topic. They would rather avoid it. They did not quite figured out how to use autism to their advantage. And the fact that entire society is not ready and clueless what to do with the autistic is not a surprise. It is not a new new phenomenon, but the problem is that it is no longer rare. Wave of thousands of untreated autistic children are quickly becoming autistic teens. Some of them will learn how to adapt and find a safe place for themselves among neurotipical conforming crowd. But some of them will not in spite of their and their families best efforts. And all existing societal structures are not ready for them. Not school system, not justice system, not health system, not the police. Families will no longer be able to contain them. Unpredictable even to people who raised them from birth they are dangerous for themselves and people who take care of them.

What will it take for Canadian politicians to take action that parents of autistic children are begging them to take for so long? I hope one day I will know the answer.

Friday, August 27, 2010

Free Workshop for Parents about Intensive Behaviour Intervention (IBI) for Children with Autism

The Behaviour Institute is providing a two-hour workshop for parents of children with autism who are considering IBI services or waiting for those services to start.

The workshop will describe what IBI is, show videos on how it is presented and help families learn how to begin to use IBI principles to develop their child’s skills in communication, following instructions, and early learning skills. The workshop is intended to help families who are waiting for IBI develop some practical strategies that they can use now.

The workshop will cover:

• What is IBI?
• How are children taught using IBI?
• Examples of how to teach early learning skills
• Examples of how to teach improved communication
• Examples of how to teach a child with autism to follow adult requests.

Videotape examples and hand-outs will be presented.

TORONTO
Location: Eglinton Square Library (in the Eglinton Square Shopping Centre):
1 Eglinton Square,Unit 126, Toronto, ON M1L 2K1
Date: Wednesday September 15th
Time: 1:30 - 3:30 p.m.

Location: Lillian H. Smith Library, 239 College Street, Toronto, ON M5T 1R5
Date: Wednesday October 13th
Time: 6 – 8 p.m.

VAUGHAN
Location: Dufferin Clark Library 1441 Clark Avenue West, Vaughan, ON L4J 7R4
Date: Monday September 27
Time: 6 – 8 p.m.

MISSISSAUGA
Location: Central Library, 301 Burnhamthorpe Rd West, Mississauga, ON L5B 3Y3
Date: Wednesday October 6th
Time: 1 - 3 p.m.

Enrolment in the workshop is free, but there is limited space. Please indicate which workshop you wish to attend and call Jean at 416-251-9277 or email her at JeanatBI@Rogers.com .

Saturday, August 21, 2010

Clogged toilets and embarrassment

I am a landlord because I rent bigger half of my little house.That is why I can work only part time, and have time for my boy. Being a landlord can be very sweet if your tenants are nice and responsible people and nothing brakes in the house. but when things go wrong they go very wrong and it happens very quickly and it is usually a big and unpleasant and/or expensive. I have been very lucky so far. My tenants are great. But lately they are late with rent and today there was knock to y door at three in the morning because of the clogged toilet. I wish they called me a bit earlier before the big mess, and a lot of sewage soaked towels . The dirty toilet water leaked all the way to the basement. I was able to unclog the toilet but it took strong plunger, lots of muscle power a lot of time and some positive thinking. My tenant very polite and shy young man was embarrassed up to his ears.

When I was taking a shower after the ordeal I was thinking that I would like to find the way to embarrass Ontario Government about clogged waiting lists for behavoural intervention, and premature discharges from therapy for autistic children. See how my brain works? It is very "mono-thematic". Yet I think that in present Ontario government has no shame or conscious. It has not evolve yet to be capable to have those sentiments spontaneously between elections. . It is still a prehistoric beast lacking ability to have higher emotions or even ability to reason, or process basic arithmetic and add and compare simple numbers. Well fed by tax money gets restless and a little uneasy only before elections. Then it sheds it's skin shakes off old scales and goes back to old habits.

Oh boy it is very late, I just dealt with really dirty problem and it got me ranting a little.

Friday, August 20, 2010

Dog Guides interview.

Few months ago I applied for a guide dog for Sebastian at Dog Guides Canada. they processed our application very promptly, and last Wednesday we had a visit from Melba the dog and two lovely ladies who came to interview me and see Sebastian and see if our dwellings are suitable for a dog.

We sat in the yard and chatted for over an hour. I was telling our story again. I do not like our story. When I say it I have the same feeling when you gossip about someone, and say some harsh words about them that maybe even truth and well set in reality but unkind. There is that uneasy feeling inside trying to stop me from saying critical remarks. I usually silence it by thinking to myself that it is the truth, I am not making it up. Yet I always feel bad when I finish my unkind comments. When I tell our story about what happened to us I similar wave washes over me. I do not want to think about it or remember the pain and despair we were going through for so long. I want to change it. I want to change our story. But how can I change something that already happen? I can think of only one way; by adding the happy ending. Don't you think so? Even the worst story when it has the happy end ends up being a good and uplifting one. So that is what I am working on. Wish me luck.

During our meeting I have learned a lot about the guide dogs program, and I will admit that incorporating the dog to a family is a big commitment. Since our family is so small it would be a big change and adjustment for us. I was never involved in training dogs, and all I know about it is from watching "The Dog Whisperer" show. I adore Cesar. So I have a lot to learn. But I believe the effort is very much worth it. And I truly believe that ti would be great for Sebastian.

We were talking about all the details of the process of getting the dog, and then there was mention that if we qualified we would be then put on waiting list that is now about three years long. Sebastian is seven now. So he would be getting his dog when he is ten. "..but autistic children are used to long waiting lists..." our interviewer said. She talks to many families of autistic children, and that is what she was hearing from them. Autistic children are used to waiting lists. Well autistic children do not even know that they are on waiting lists. And yet they are waiting. Patiently. For the rest of us to acknowledge they they are important enough to receive services that they need. But they do not have the power. They often do not even have words like my son. Their exhausted and stressed parents often do not have the resources or strength or time to fight for them. I want to change and stop telling that sad and sorry story too.

During our conversation about guide dogs, we have learned about something that will gave us little more hope. Guide dogs are super dogs. They have to behave perfectly in every situation. They have to be fearless and show self restrain in all circumstances. They have to resist temptations of chasing squirrels of sniffing other dogs in public places. They have to be calm. Not all the dogs can do this. Some of them in spite of training stick to their doggy behaviours and have so called "flaws" and can not pass the dog guide standards. And those dogs are still very good dogs and are available as "companion dogs". And the waiting list is not that long for them. But they do not have the status or privileges of guide dog. That means they are not allowed in all public places dog guides are. I am thinking now may be something can be done about it. May be those dogs can be given some special passes that would help them accompany the children in more places. But regardless, I think it is quite good option for many families. Dogs are excellent, and well trained, and child receives all the benefits of the love only dog can give.

Thursday, August 19, 2010

Lazy summer

I did not post for a while. Hot and humid weather is a god excuse for being lazy and slow. Actually it is the only way to survive the conditions. So we took it easy. Day rolled after day, sometimes with, and sometimes without Sebastian having allergic symptoms. We were going to the park, to the beach, to the store, and even that felt some days like a lot to do.

Sebastian is more relaxed and perceptive than he ever was, I lost my morning aches. We both are are little healthier and happier.

Cicadas this year started announcing earlier than usual that the end of summer is coming. But what a good lazy summer it has been for us.

Well I did not do all the things I was thinking about doing, but if something has to be done it will be. In its own good time.

Thursday, August 12, 2010

Ontario’s Autism Crisis

This article was written by Taline Sagharian and posted and distributed by Autism Canada on their Facebook page and their newsletter.

August 2010

I won’t attempt to quantify in this article the immense amount of effort that my colleagues and I have dedicated towards the autism cause. There is no question that the climate for autism advocacy in Ontario has changed drastically over the last decade. When comparing the tiny steps in the improvement of autism funding and services in Ontario to actual large scale advocacy events, it is obvious that a clear relationship exists between the two and I doubt that this correlation is a mere coincidence. The autism and Applied Behaviour Analysis (ABA) advocacy community in Ontario is the envy of all other disabled rights groups. We are focused, we are relentless, we know what our children need, and we do not take no for an answer. I will not take this opportunity to elaborate further on this except to say that this story would be better suited to fill the volume of a book someday.

I have been advocating for appropriate publicly funded autism programs and services for much longer than I had originally planned, and have therefore witnessed its evolution. What has surprised me most is not the ignorance of elected officials who hold our children’s fate in their hands, but rather, their arrogance. Learning is a part of life, and there’s nothing wrong with making mistakes—so long as we learn from them and move forward. I believed that once we offered viable solutions to the severe gaps in programs and services for children with autism in our province to those in charge, they would listen and work with us parent advocates to create a change for the better. Silly me.

As a child, I remember watching a cartoon where the character was sitting in a boat in a body of water, and water started coming in through a hole in the boat. He successfully plugged the hole, but then another one appeared and water came in through there. Although he was able to plug this second hole too, several new holes appeared, and he found himself frantically trying to plug them all as more and more holes let water into the boat, and the plugs in the others broke too. I can’t help but find this cartoon character’s dilemma similar to our government’s strategy of attempting to place plugs in the many holes in autism programs and services. The quick fixes may serve as short term solutions; however, the vessel is in desperate need of serious repairs.

The autism crisis that Ontario is in today took many years to build, for from its inception, the IBI (Intensive Behavioural Intervention) program, which is the provincial government’s publicly funded ABA program, has been riddled with glitches, the most obvious of which is the lack of a continuum of services for school-age children with autism. The pressure has fallen entirely on the shoulders of the Ministry of Children and Youth Services to help children with autism, which has led to a tremendous IBI waitlist, the issue of premature cut-offs from the program, and the mutual exclusivity between IBI and a public education. After several years of litigation and advocacy urging the Minister of Education to rectify this pressing matter, a memorandum was finally issued to the Ontario school boards instructing them to deliver ABA—not IBI. The Ontario government’s perversion of the distinction between ABA and IBI prevents children with autism from receiving adequate treatment and education, because the Ontario school boards are relying on this distinction to serve as an excuse as to why they can’t provide for our children’s needs in the school system.

Until such time that school-age children with autism are able to receive a publicly funded education and ABA—REAL ABA—including IBI together, the question of if, how and when to cut off children from IBI will remain unanswered. Families will respond to any proposed cut-off through various creative means of protest, the waitlist for IBI will continue to grow and children with autism will continue to live in the shadows of Ontario’s public education system, and ultimately, as second-class citizens in our society.

Sunday, August 8, 2010

Short summer update

It is hot. In days when the sky is gray and air still Sebastian has allergies again. Even my eyes sting in mornings like that. We had some sleepless nights. I am working some. More sleepless nights for me since I work nights. I am tired and just coping again. I am trying not to complain much - obviously I am not doing a good job at that here.
I am imagining a place with clean air cool nights, and inexpensive healthy lodging and beautiful views. And may be some free food. And some magic.

Tuesday, August 3, 2010

ARO letter to the Commissioner of Conflict of Interest

Autism Resolution Ontario send a letter to Commissioner of Conflict of Interest. I wander what kind of response they will receive.
Dear Mr. Linden,

My name is Sharon Aschaiek, and I lead Autism Resolution Ontario, a grassroots, non-partisan, parent-run advocacy group working to make government-funded autism therapy more accessible. I’m writing to you in regards to a disturbing instance of conflict of interest relating to a specific aspect of the Ontario government’s administration of autism services that raises serious concerns about the level of objectivity used to administer these services.

The Ontario government is in the process of having an “independent review” completed on the benchmark criteria it uses to evaluate how long children can participate in the publicly funded Intensive Behavioural Intervention (IBI) program. However, it has come to light that there are multiple conflicts of interest relating to the person who was hired to do this job, and how this person came to be hired.
The person who was recruited to complete this review is Dr. Louise LaRose, which is problematic for multiple reasons: she is a former clinical director in the government’s Autism Intervention Program (AIP) who has been involved in discharging children from the IBI program; she has in the past professionally collaborated with Dr. Nancy Freeman, the current chair of the Benchmark Development Panel—which prepared the very criteria Dr. LaRose is reviewing; and,
she currently works at the Child and Parent Resource Institute—a special needs services agency that is 100% funded by the Ministry of Children and Youth Services, which oversees the IBI program. These three facts reflect Dr. LaRose’ intimate connections to the IBI program and call into question her ability to conduct an impartial and objective review of the discharge criteria.

Furthermore, information has surfaced that shows the hiring process used to recruit Dr. LaRose did not follow typical protocols that are in place to ensure the best candidate is hired, and to prevent instances of conflict of interest from arising. Inquiries by the autism community to the Ontario government about how this contract was secured revealed that a new system developed by the Liberal government was used—an “invitational” request for proposals (RFP) process whereby specific candidates are invited to apply. This type of RFP is used for contracts that require specific expertise in the skills required for the particular job, and at least three candidates must be invited. Experts in autism and Applied Behaviour Analysis (ABA) (of which IBI is the intensive application) have indicated that, if this RFP had been made public, several candidates in Canada and the U.S. would have qualified to analyze these benchmarks. The whole objective of an RFP is to ensure taxpayer money is spent in the best way possible by securing the most qualified and efficient candidate for a particular job. How can this objective be achieved if the RFP is not publicized? Furthermore, one would think that the task of evaluating criteria that affects thousands of children with autism and their access to therapy would be considered important enough to merit a fully public RFP to ensure the recruitment of the most qualified candidate.

What’s more, the invitational RFP process the government used in this case requires a contract must be for no more than $100,000. The recipient of the contract, Dr. Louise LaRose, requested $118,240.70, which is clearly above the maximum amount. Even if the final amount of the contract was settled for less than $100,000, there is no reason why it should not have been a standard RFP contract publicized to all potential candidates.

On April 19, 2010, ARO presented its concerns about Dr. LaRose’ close ties to the AIP (information about the unconventional hiring process used to recruit her wasn’t known at the time) to Minister of Children and Youth Services Laurel Broten at an in-person meeting. The minister responded by assuring us of Dr. LaRose’ qualifications and her confidence in Dr. LaRose’ ability to do the job; our concerns relating to conflict of interest were not addressed. The minister has also been made aware of this issue by a December 18, 2009 letter sent by Laurie Mawlam, executive director of Autism Canada, to Lise Bisnaire and Peter Moore, co-chairs of the Regional Autism Programs of Ontario Network (RAPON), and copied to Ms. Broten; and, by a question posed to her by Ontario NDP leader Andrea Horwath during the June 2, 2010 question period session in the Ontario Legislature at Queen’s Park. To date, the minister has not responded to neither myself or nor these other parties to fully address this issue.

The families of Autism Resolution Ontario are deeply concerned about this instance of conflict of interest by the Ontario government in its administration of this process related to autism services. The government’s refusal in this case to follow established protocols designed to promote objectivity in the hiring process so as to ensure the most suitable candidate was hired reflects a deep disregard for the community affected by these actions—thousands of children with autism who rely on effective and impartial decision making by government so as to receive sufficient and quality therapy.

Children with autism have a right to timely, sufficient, individualized and quality therapy so that they can meet their basic developmental needs. We are asking you to investigate this instance of conflict of interest, and to take appropriate action, so that children with autism are no longer subjected to the risks it poses to the quality of their publicly funded therapy. Based on what is known so far about Ms. LaRose and how she was hired, it is imperative that the “independent” review of the IBI benchmark criteria be put on hold until a full investigation of this issue can be completed, and until a truly impartial candidate vetted through a proper RFP process can be hired.

I would be happy to speak with you in person or by phone about these matters, and to provide you with documents that support the facts raised in this letter.

Best,

Sharon Aschaiek
c/o The families of Autism Resolution Ontario
CC: Premier Dalton McGuinty
Minister of Children and Youth Services
Minister of Education
Minister of Health & Long-Term Care