Sunday, November 7, 2010

Giggles

Something good to report:
Sebastian today was more giggly than I ever remember.
It was a real delight to watch him laugh and jump and initiate interactions all day. Allergy season is mostly over, and he is off antihistamines for over a week. Happy times!

Thursday, October 14, 2010

Thanksgiving Weekend

The weather n Thanksgiving weekend in Ontario was fantastic. Summer temperatures and autumn crisp air made it just dreamlike. Last few years I have been noticing good weather, but often I was not able to take it in. It is better now.

We were visited by a wonderful friend from Montreal, and thanks to her we went out more and had a great time. On Saturday we went for Hamilton harbor boat tour. The marina is just walking distance from our house, and we walked there, but I never thought about going on the boat myself. It was the last chance to take this tour this year since it was the last weekend the boat was riding. We were the only people on the boat, and the captain was very nice and tolerant of Sebastian restless behaviour. Sebastian enjoyed even boat rocking and was smiling most of the time.


Sebastian an our captain.





Sebastian enjoying our private boat tour.

On Sunday we went to Niagara.
Here are rainbows and smiles and pretty women:








After that we went to Niagara Gorge. I have never seen that place before, and I am very glad my friend wanted to go there.





The views were stunning, and I feel like sharing them here.







On our way home we stopped in Niagara on the Lake, and on Hamilton's beach at Hutch's Dingley Dell for delicious fish and chips.

On Monday we were over for a thanksgiving dinner at Simon's place and that went well except the fact that Sebastian likes making himself comfortable by undressing completely.

All weekend was full and rich in experiences and sights and we are very thankful indeed for that thanksgiving time.

Saturday, October 2, 2010

Why I do not feel like bloging

September was rough, rough, rough.....

Sebastian was hit by new wave of acute allergies, collection agencies were send after us by a lawyer who charged me triple of the originally discussed amount for helping with application to Human Rights Commission, and on top of it we have got the news that we will not make even on waiting list for a guide dog for Sebastian. I suspect that the reason for that was the "culture shock" people go through when they enter our little house. The renovations were never finished after Sebastian diagnosis. So our house is not good enough for a dog. We need new floors, some plastering on the walls, new windows and more, and much more. Most pressing is an exchange of old pipes that might have led in them as I found out about it just over a month ago.

I have a grand dream for our little house, but I really do not know where to find money for new dry and mold free basement, heated floors and some passive solar technology, and may be even new driveway. And of course air filters same as they have in hospitals. I was thinking about applying for government program for low income home owners, but we rent part of our house so we do not qualify, and by the way my renters are late with their rent.

My mom sounds depressed when I talk to her on the phone. She is too old and frail to live by herself.

I think I am stressed, stressed, stressed ...

Tuesday, September 14, 2010

First school week

First day was great. Sebastian had a taxi send for him, because of some school bus mix up, that took a day to straiten up. so I had to go with him. It was good to see everybody after the summer.

Next day one assistant got bitten. Than the other one got scratched and bitten. On the third day I was called to come and pick Sebastian up, but by the time I came he was settled down.

Weekend was rough because of heavy allergies. On Monday he was fine in the morning at home but scratched and ripped the lump of hair of another special needs child that was sitting in front of him on the bus. When I came to school half an hour later for a meeting he was still screaming. His allergies were making his eyes hurt in spite of maximum dose of antihistamines I have given him right after he got up. It took more than an hour for it to kick in. Than he was fine till he came home. Another hour of crying. We went to the park, it did not help. We went to health center with my screaming and biting boy. They send us away to go to emergency. But that was just when the hour passed drugs started working and he calmed down. We have an appointment today with the nurse.

Other than that things are well. Other than that....

Monday, September 6, 2010

Nagara Falls

On Saturday my friends who live in Chicago came to visit us and we have met at Niagara Falls. We drove there and waited for them to cross the Canadian border. This is Sebastian waiting patiently in company of king George.


The weather was great, and Sebastian was pretty calm.


We decided to go on boat ride, although the decision as usual involved bit of risk.


Putting on and keeping on noisy and slippery blue raincoat was a bit of the challenge. But the ride went very well and Sebastian enjoyed all the sensations: the moving boat, the noisy motor, crowd of people, and the shower from the falls.

I did not manage to take any more pictures during the ride, since I had to hold on to Sebastian tight and keep his raincoat on. If my friends will send some pictures they made I will post them, but for now it is all I have.

It was a good adventure even though we did get a little wet.

Friday, September 3, 2010

Ikea

We went to Ikea yesterday. Sebastian felt at home, and was jumping on, and testing every sofa and easy chair, and diving into EVERY bed we were passing by. He politely would take off his shoes before getting under the covers in beds. He was hiding under the cowers, he felt smooth and soft textures of the bedding, he really enjoyed himself there.
After the shopping I bought him frozen yogurt - ice cream cone. Yeah, there it goes: to the hell with the diet, but I think it was worth the experience.

Ikea is one of the few places where we can get away with Sebastian's behaviour without too much attention from the store staff. And Sebastian likes the good furniture!



Wednesday, September 1, 2010

Last day of vacation

Yes, I haven't been posting much lately. The reason? I feel a bit blue. And I do not feel like sharing whiny disappointments would help anybody. But I can do it in one sweep here and get it over with. So I have hoped that before this summer ends I will have some issues resolved, some decisions made. I hoped that Sebastian's tummy will work better since my plan was to be stricter with the diet and I expected results . Now the August is over and I am where I started, things are roughly the same as they were two months ago. We survived few heat waves, quite a few allergy attacks, few diarrhea spells of unknown origins. I haven't made any decisions, do not feel inspired to any new brilliant action, instead my hope quivers and shakes like a leaf. Even more, I think I am going through a wave of grief again, because when I see my child do something like chew ferociously on almost anything , or pull his tong for hours, or smear feces on the wall and realize that he is seven now, and no, he has not "outgrew it" , it is quite different from the time when he was three, and I thought I could help him. It is all different now. And no, it does not get easier. Not for me.

Sebastian has no therapy now, and I a not one of those mothers that can do it themselves. I found a teacher who is a legend in Polish community. She is brilliantly gifted and has had great success in opening communication with special needs children. I love her energy and enthusiasm. She can see Sebastian once a week, and come up with techniques to carry on during the rest of the week, except I can not carry on. No. Not in the state of mind I am now. I do not know if ever. Without it Sebastian has no chance. So there you go. Here is my guilt and feeling of inadequacy that kills me. And the longer I think about it that the worse I feel. And the worse I feel the less I can do. Vicious circle that's all.

And that end of summer is another marker in time that reminds me about things are not going well. And strangely I can not turn that tide no matter how hard I try. Or do not try. It does not seem to make much difference at all.

Other than that temporary little glitch, all is well in our beautiful universe.

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

Friday, July 30, 2010

The ombundsman update

This is Norrah Whitney Facebook post I ma quoting directly.
Make friends with her if you already hasn't.

The OMBUDSMAN outlined the extent to which they can influence Government decision making. I spoke with two investigators regarding the benchmark analysis tender which was the main focus of our discussion. My concern is if I disseminate the contents of that discussion in which I was requested to send further evidence than I had already sent to them, they asked for very specific things, it would give the Ministry time to "build a story" and I do not want to afford them that opportunity. Even the Ministry has no idea what I have, but what I can assure you it is raised the full attention of the OMBUDSMAN which may not really worry the Government. However, after further discussions and in fact finding out MYCS is under investigation by the OPP, they will physically be meeting with me next week to go over all my documentation about more than one benchmark analysis tender, no I have much more than that. I spoke directly to Premier McGuinty and told him I would take action that there was no more game playing. I also informed the OMBUDSMAN that on several occasions solutions were presented to the Government, found viable by the federal Senate and yet completely ignored, even though it would it follows the world's leading economists model, Mr. Adam Smith. While the news has maintained that no politician was aware of any wrong doing in tendering of contracts we will let all the evidence speak for itself regarding multiple tenders and let the OPP decide if one of the things their website describes as their function, "investigation political corruption", has in fact taken place. I think the evidence speaks for itself and as I say after discussions they feel it necessary to review the documents with me.

I did ask the OMBUDSMAN when we decided that it was okay to use human subjects without any protocol? Children .....I also spoke to them about potential illegal activity by certain individuals, providing details, and assuring them the abuse is rampant. I asked them if the wondered if parents of children with cancer ever had to endure what I described to them. They asked me if I was going to take legal action. That remains to be seen. 
Right now they want to look specifically at the tender of the benchmarks if you have any information even if it replicates what has been submitted phone them and ask for Ms. Hart. If you have any information regarding ANY highly questionable tenders that conflict with Service Chain Management Rules or the Ministries story itself and have evidence than please contact the OPP anti racketeering division and ask for Sarah Brown, you can call the general number and you will be placed through, but please they are very busy with a massive investigation so it must be specific and you must have hard evidence.

In a few weeks I hope to be able to post more, in the meantime everyone should write the Commissioner on the Conflict of Interest and tell him you want the benchmark analysis fully investigated. I informed the OMBUDSMAN that the OPP are involved and I think the Commissioner and the Opposition leaders need to hear from you too. I have already informed Tim Hudak leader of the PC's that the OPP are now involved and will be speaking hopefully to the NDP office.

Something very big is coming, I have waited 14 years and no regional provider or co-opted non profit will be able to stop it. I can't wait until it is publicly announced, but it will veto Tristram Smith's well paid hand in Ontario. Things are going to change.

I hope so.

Thursday, July 29, 2010

Kozak v. Toronto District School Board decision

Another disappointing court decision on autism.
I wander what causes such heartless resistance and lack of understanding of our establishment?
I wander what it will take to make them understand the obvious? What it will take to change?. I wander how long I will keep wandering what to do. For now I do not even know what to think about it. It is a mystery to me.
Here is link to pdf document. Read all about it!

Tuesday, July 27, 2010

Taline meeting wiith ombudsman

I am posting email I got from Taline Sagharian - long time powerful autism advocate. There is a lot of useful information so I am posting all of it:

I was interviewed by two investigators at the ombudsman's office on Monday morning. Over the course of our 45 minute conversation, I shared details of what has been uncovered in the benchmarks analysis case thus far. I stress that his office will not be investigating the IBI waitlist, the cut-offs, or the mutual exclusivity between ABA/IBI and a public education. However, based on the benchmarks analysis information I have been sending to them over the last several months, they are looking into the possible "mal-administration" of this and other autism contracts. If anyone else has information to share on this particular topic, I urge you to come forward and contact his office at info@ombudsman.on.ca.

Below is some of the information I shared with them. Evidence that supports all this has been sent to them over the last several months and I referred to each one at the appropriate time during our conversation.

1) Benchmarks

I provided them with a history of the benchmarks which are identical to the Stockton Criteria in California where a class action lawsuit against them has now been certified. Although the ombudsman's office is unable to get involved in the issue of the benchmarks itself, I felt that it was important that they know the background history and that these details have been shared with our government by advocates and autism organizations through letters, e-mails, and personal meetings, but it has been ignored.

From our American friends...

It seems like I've fallen off the planet but trust me, we are working hard here in California. Our lawsuit, now in full filed effect, is awaiting official response from federal court and discovery and depositions are in our near future on the Stockton criteria and illegal benchmarks. You might have noticed that I took down the www.autismreformcalifornia.org website for now. I am working to move it to another webserver and if you click on www.autismreformcalifornia.com you'll see a crude frame of a website. This will soon change, no worries.

For now, the autism bills are being presented again this November which would make the Stockton criteria legal. I am confident we will get Gov. Schwarzenegger to veto it again.

Just so you know, here are the bills we got vetoed for the 2008-09 year:
SB 1475 Autism Pilot Program (would allow state dept. and one regional center to create criteria)
AB 1872 Autism Clearinghouse (would allow certain people to decide who gets ABA)
SB 527 ASD: Screening (would allow state dept and one regional center to decide who gets ABA)

Gov. Schwarzenegger received our letters and I believe our advocacy got him to veto all three bills.

This year, 2009-10 SB 527 is back. It is disguised under SB 383. If you look it up, you'll notice that it is the same dangerous bill. We plan on taking it down by sending out our plea for the Gov. to veto it again.

I'll send you a copy of it when it starts going out.

Keeping you posted, and keep fighting the good fight!

2) Analysis of the Benchmarks

a) Process

I told the investigators that our community is concerned that the process for securing the contract for the analysis of these benchmarks was not handled in an appropriate (ie: legal) manner. When we first inquired, we were told that this particular contract was secured through a new system that the Liberal government had developed which is an "invitational" request for proposals (RFP) process whereby an RFP is issued by invitation only to certain candidates. We discovered that this type of RFP is used for contracts that require specific expertise in the skills required for the particular contract, that it must be for no more than $100,000 and a minimum of three candidates must be invited. The recipient of the contract, Dr. Louise LaRose requested $118,000, which is clearly above the maximum amount. We have asked the government what the final amount was that the contract was settled on and have not received a response. If our government has nothing to hide, then they would share this information freely.

Experts in the field of autism and ABA have stated that there would have been several candidates who would have qualified to do the analysis both within Ontario and in the US, had the proposal been made public. Furthermore, the entire reason for RFPs is to ensure that taxpayer money is being spent in the best possible manner by securing the most qualified and efficient candidate for a particular job. How can this be accomplished if the opportunity is not publicized? One would think that for such an important job as evaluating guidelines that will impact thousands of children with autism, the government would make it their priority in choosing the best in the field to evaluate the cut-off decisions. So even if the final amount of the contract was within the government's own rules of being under $100,000, that they decided to use an invitational RFP rather than a standard publicized one raises many concerns.

b) Conflict

I told the investigators that the conflict problem was raised to the government on numerous occasions, again by advocates and autism advocacy organizations and the government has not responded. People are concerned that Dr. Louise LaRose was working for the government when the RFP was prepared and that she has worked closely in the past with the Chair of the Benchmarks Development Panel, Dr. Nancy Freeman. Had the RFP been publicized, there could have been many other candidates without any potential conflicts.

3) PPM 140 - ABA in the Schools

I said that our community is also concerned with the government's conduct in granting the contract for the PPM 140 training of school boards to the Geneva Centre a couple of years ago. This contract was for $3-5M. Was this opportunity ever publicized? The fact that the message the recipient of the contract would communicate to the school boards could potentially impact thousands of children in the public education system demands that it should have been publicized. An example of a message is to support the Ontario government's distinction between ABA and IBI thereby blocking any possibility for our children to receive an appropriate public education.

As I had mentioned in my previous mailing, others will also be interviewed this week. The question of the process to secure the contracts for the Benchmark Development Panel itself is also being raised. I will update all of you once I am able to share more details.

Taline

Thursday, July 22, 2010

Thick Air

There are days when the air is so thick here that even my eyes sting, especially in the morning. What this is caused by I do not know--maybe pollen, maybe belching industrial smoke stacks poking the sky nearby. When my eyes start to burn, I know that Sebastian and I will have a difficult day. Sebastian wakes up with dried, green discharge in his eyes, and he starts crying right away. The medication I give him helps a little, but even when he eventually stops crying he stays irritable and hyperactive for days. He runs from room to room and back never staying still for a minute. It happens mostly during hot and humid weather, when I am trying to keep at least one room cool, but keeping the door closed is impossible. He has trouble falling asleep, and sometimes he falls asleep in the wee hours in the morning only to wake up early crying before the antihistamine I have to give him right away starts working.

This happens mostly during heat waves, when the hot and humid weather makes life uncomfortable by itself, and Sebastian's behaviour sends me into survival mode. Doing dishes and cooking soup feel like heroic efforts. This is how we spent most of the past week. Even middle of the night excursions to the water front were not bringing much relief. The fishes in the bay must have wonder "Why is that boy screaming like that?".

But today the air moved, and mysteriously, as if by a miracle Sebastian's behaviour changed. He is far from his previous calm, but he slept well last night, and was crying less--although he's still a bit hyper, but much less intense--and he even started giggling some. My brave and so incredibly resilient little boy!

Tuesday, July 20, 2010

beach

Playing with others is not easy for Sebastian, even on the beach. Building castles, with my hand on his hand, is met with vigorous resistance. Smashing what others build seems to come easily though, and with a spontaneity rarely seen elsewhere.



I have learned to cherish every gesture, even the most fleeting unprompted interactions.



Monday, July 19, 2010

Daily affirmation

Recently I have been making a conscious effort to make my attitude more positive and hopeful. I am trying to be positive, think happy thoughts and be more hopeful. It does not come naturally. It is is not even a choice, but a necessity. The last five years of pure despair have left me depleted and exhausted. But it is never too late to change an attitude and so I have been relaxing, directing my thoughts to happier places, and this helps a lot.


Making daily affirmations is the part of the process. And I thought I was doing alright. But after watching this youtube clip I think I need to crank it up a notch. The next generation is doing so much ahead of us, and we have a lot to learn from them.
:-)

Sunday, July 18, 2010

White clover

I am a far from diligent lawn mower. I cut the grass as infrequently as I can. I have my lawn mower set very low so when I cut the grass it cuts almost to the roots, and then it takes longer for the grass to grow back. But this year after a few such treatments grass did not grow back. The white clover took its place. White clover is considered by many to be a lawn weed, but recently attitudes are changing and there are websites advising one how to establish this nitrogen capturing plant in yards and gardens.

I enjoy the sweet scent of little white flowers. I like the shape of delicate leafs that bring luck if there is more then three of them on the stem. In my childhood we played a game of finding these magical plants. I watch bumble bees laboriously visiting every one of them. I watch Sebastian through it while he jumps on the trampoline and I think that is real summer. Our real summer together.




White clover lives in clusters often originating from a single plant. They seem to enjoy the companionship of close family members.


Delicate, elegant and exuberant flower arrangement in the shape of a sphere .


That is our little blue house set in the middle of a white clover jungle.

Saturday, July 17, 2010

IVOTE4AUTISM: ILLUSTRATED

Here it comes: the new brilliant way of advocating for autism.

It is difficult to explain complicated issues of government neglect of the pressing issue of autism - a devastating and little understood disease reaching epidemic proportions. Often autistic children are helped to learn communication with the aid of pictures. Maybe that is where the idea came from to create this cartoon. The cartoon is clever and funny. Unfortunately the issue it covers is far from it.

Please visit the IVOTE4AUTISM: ILLUSTRATED blog to see enlargements.


Tuesday, July 13, 2010

Perfect moments

Last night Sebastian started screaming short before midnight. It always catches me off guard. How is it possible that allergies hit him suddenly and seemingly out of nowhere after days and sometimes weeks of peace? Sometimes they go away without giving him medication. I do not like keeping him on antihistamine unless it is necessary, because he gets eczema on his arms when he is taking it. Sebastian does not even whimper when sand or soap gets into his eyes. So the allergies must hurt him very much to make him scream very intensely for such a long time. It takes about twenty minutes for the antihistamine to start working. Twenty minutes of his crying is not easy to take. So I put him in the car and we drove to the waterfront park where the air is different and the change of scenery helps a bit. It was just after twelve at night when we got there. I like this place because there is a good trail from two sides and an open space to run around and benches so I can sit down and watch Sebastian in open space without losing sight of him. He likes looking at the water and the ship docked by the shore. There is always a breeze. Well, not always.


This time there was no wind. Everything stood still. The water looked like a black mirror: smooth wrinkle-less and shiny. The only sound we could hear after Sebastian stopped screaming were fish jumping out of the water. I was watching the wave-rings they were making on the completely smooth black and shiny surface of the bay. I saw motionless silhouettes of cranes different sizes and shapes standing on the edge of the water trying to catch fish. They flew away when we came closer, flapping their long wings, bending their skinny necks and dragging their long legs behind, almost touching the water.


Sebastian was running around calm and happy like if the pain and screams from just minutes ago never took place. The lights reflected in the water shimmered, and fish were jumping. A perfect moment, I thought. Almost surreal. Peace. Soothing calmness. Quiet joy. We were the only people in the park. Nobody to compare to. Nobody to make excuses to and for. Freedom to walk, jump, run and hum for Sebastian; freedom to sit still for me, and just soak up that perfect moment. It would never have happened if Sebastian had felt good. We would be in bed sleeping soundly. A perfect moment to make me thankful, but not enough to make me be thankful for Sebastian's pain and the distress that made that moment possible. Paradox of mixed blessings.

Monday, July 12, 2010

Sleepover

We had two boys; 8 and 5 years old, for a sleepover. the boys are well-natured, considerate, and familiar with Sebastian's behaviours. They know to recognize and run for cover when he screams and becomes aggressive. Sebastian is familiar with them, and I thought it would be a good experience for all to share space. All including me. Sebastian is my only child and I do not know much about "neurotipical" children's behaviour.


I have to admit that Sebastian, although demanding in some ways, is not as challenging in other areas. I am just not used to the constant questions of always wandering, forming minds, and the steady flow of ideas and projects. Sebastian, when left alone, is happy to chew on his favourite rubbery, soft objects. He jumps on his trampoline. Occasionally he flips through a book. The most adventurous thing he does is to find himself a new, most of the time inappropriate object to chew on. The visiting boys had ten ideas a minute about what they were going to do next. They were conquering Sebastian's puzzles with zest and satisfaction, making up superhero stories using a little Garfield the cat plastic figurine, requesting toys, drinks snacks (I did not have any except of raw carrots): my head was spinning. I think it would take me some time to figure out how to manage a crowd of three kids.


Sunday, July 11, 2010

At Queen's Park - day 85

After the heat wave and the G20 mess, we have few excuses not to go to protest at Queen's Park.
It takes us long time just to get out of the house but we made it to Queen's Park in the afternoon.




The park looks better than last year, and there is no construction any more.


It is hard to keep Sebastian still or occupied for a long time.
the sand is not as good as on the beech.

Saturday, July 10, 2010

More Sand


We start off playing with bucket and shovel.



Sebastian prefers to study sand's properties with great intensity and dedication, without using any man-made tools.


He uses all his senses



He does not mind discomfort, and he never cried no matter how much sand fell in his eyes.

Making sand angels.


Interacting with kids is not as easy as sand studies.



"I am cute even with sand in my hair and I know it!"



NO MORE PICTURES !


Short memory

It is amazing how quickly we forget about the toughest and roughest of times. During the heat wave we visited playgrounds and parks in the middle of the night and we slept during the day and that is how we survived the hot and humid weather.

Sebastian did not have allergies for last couple of days. I concentrated on his diet: broths, soups, vegetables, fats, and he has been much better last few days His eczema is clear and his belly is flatter that I have seen it for a long time. The weather is better too since yesterday's rain. Good times!

We are going to the beach!

Tuesday, July 6, 2010

Heat wave and allergies

After middle of the night walks in the park Sebastian woke up around eight in the morning. It is really hot today. He was fine for some time, and when he started crying I decided to go to the park again. So we went, and he did not get better, but worse. It is very hazy and hot even by the lake today. We came back home. I gave him antihistamine, eye-drops and a painkiller, and decided that we would go to the hospital emergency room--for filtered and air-conditioned air if not help--unless he would stop crying soon. It took longer than half an hour but he has just fallen asleep.

My goodness me!

What frustrates me is that I have such a hard time connecting the dots and figuring out how to help him, how to know ahead of time what could happen and prevent these episodes, and how to ease his pain instead watching him suffer. Shouldn't I by now have developed some motherly instincts that would help me? I feel very helpless, and allergies are not the only thing I feel helpless about.

Midnight walks and something unfriendly in the air

Sebastian's "whining" around midnight turned into crying, and when I went to check on him he was crying very hard. His eyes were pink and his eyelids swollen. I gave him allergy eye-drops, and waited for twenty minutes. He kept crying. I packed him in to a car, and drove to the near-by waterfront park. Such journeys have helped many times before. We were questioned by some concerned policemen since we were a strange looking couple: Sebastian crying, and resisting getting out from the car, and me dragging him out, barefoot and in a nightgown at one in the morning - I thought I had sandals in the car, but I took them out earlier, and I was in a hurry to get out of the house to stop Sebastian's screams. The policeman let us go, and Sebastian quieted down in the pleasant breeze from the lake. It is now 2:33 in the morning and it sounds like he is falling asleep. Finally.

I really do not know what his sudden outbursts are caused by. On the beach when he throws fists of sand in his eyes, he does not cry or even whimper. But these sudden attacks of what I call "allergies" come at random and from nowhere. Are they allergies? They look like that to me. Are they caused by pollen or fumes from the belching still-mills, or the nearby soy factory? Maybe. I am not sure. But although I do not have allergies, I sometimes wake up with my eyes stinging; though it goes away after few minutes. Sebastian is more sensitive and he wakes up crying and does not stop. It feels to me like there really is something unpleasant and unfriendly in the air.

Monday, July 5, 2010

Under the weather

There are days when I definitely feel "under the weather". Lately we had quite a few such days. Some days I feel "under" although the weather is quite good. Not today. Today our outdoor thermometer showed 36C in afternoon, in our kitchen the temperature was 30C and we were hiding in our small bedroom where, thanks to air conditioner I bought few weeks ago, we enjoyed a luxurious 25 C. It is about midnight, and I am tired from shouting: "Close the door!" , "Turn the water off!", and closing the doors and taps all day after Sebastian opens them hundreds of times. Now he is whining , and I do not blame him: it is too hot and humid for comfort.

Definitely an "under the weather" day.




Trying too cool off and find some comfort in the red tub.
With mixed results....

Friday, July 2, 2010

Sand

It all started so innocently. We were coming back from an errand, and I decided to drop in to the beach, since we were so close.



Lake Ontario is very cold.




The beach is considerably clean, although far from pristine. It is a strange mixture of industrial and natural landscapes.



Sebastian enjoyed playing in the hot sand...


... a lot. Eating sand was part of the experience. My "Dont's!" were of little use. So I had to let go of my sand control protective instincts.



Getting sand in his hair created no obstacles




...and that is when the shorts went.

That was our university-level lesson in sand. Cold water, sand in the mouth, eyes, ears, hair, bum. I did not even have a beach towel with me, and getting from the beach to the car created some logistic challenges. Now even our car is full of sand. But we will be going back to the beach very soon.