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.