Autistic in Ontario? Better be rich! Government is spending big money helping too little too late.

Paul Ceretti brings great news!

2012-01-23T12:00:00.005-05:00

2011 was very good to us. It was year of the dog. Not is chinese calendar but in our house. We are bigger, happier and more complete family now when Inka is part of it.

2012 began with big changes. Sebastian moved from catholic to public school and things are going good so far. It did not start without trauma on day one when Sebastian has bitten his fellow student. But since then there were no such incidents I know of, and Sebastian enjoys himself on frequent day trips and outings.

The Friday the 13th was the day when we had the most exiting and luckiest news delivered personally by Paul Ceretti. Paul is well known in local Hamilton autism community as powerful advocate who does not take no for an answer, but for people who do not know I will try to introduce him. Paul is the father of autistic twins Delanie and Mackenzie similar to Sebastian in age. They were also denied IBI. His struggles are portrayed in documentary "benchMARKED". When pushing government to do the right thing by courts and media did not bring desired changes Paul did not give up. He came up with the idea of Autism Assistance Program based on volunteer work of students from McMaster University who can provide therapy after receiving training by professionals from Behavioural Institute. Students benefit by getting experience and credits. Cost of running of such program is only a fraction of the regular IBI therapy but it was still too high for me to afford at this time. And here comes the miracle: Behaviour Institute Children's Bursary decided to fund one child a year for this program. And Sebastian was qualified and chosen to receive it. So that was the news Paul brought us last the most lucky Friday the 13th. I am exited and overjoyed. As art of the program I will go through training and God knows I need it very much.

Our house it is going to be hectic in near future and it is going to be a very very good thing.

Dog Summer

2011-09-06T23:33:00.006-04:00

This was the first summer Inka spent with us. We had the entire vacation to adapt, get to know and fall in love with each other.

We had a couple of uneasy moments. In first days, Sebastian poked his finger in Inka's eye unintentionally as he was passing by her, and she did not even flinch or duck to avoid him. That made things more difficult because I had to have them supervised when they were together. Then when Sebastian did not want to walk, he got very upset and it looked hopeless for a minute because he was grabbing Inka's tail and face same way he was grabbing therapists, teachers and my own hair faces and hands during his tantrums when he was younger. But this behaviour did not last long. Now things go much smoother. We walk go for regular walks all together. Inka makes us get out more. With her, every outing is an adventure. Yes, it is sometimes more difficult since we are not always coordinated, and depending on Sebastian's moods, I have to be in control of two and not just one unruly creatures. But Inka brings a calm and rhythm and enthusiasm to our endeavors.

We visited the farm couple of times, and Sebastian seemed to be interested in goats and other animals more than ever before.

Yesterday, I saw Sebastian for the first time hug Inka. He approached her several times. He was giggling and putting his weight on her, and reaching to her face and ears. She patiently stayed put, and when it was getting too much for her she would just move a bit - she seemed to enjoy Sebastian's awkward attempts at showing affection. Inka - the best dog in the world!

Inka is Now Part of the Bunda Family

2011-09-03T15:13:00.005-04:00

Our family expanded. It is official, and we have papers to prove it. Inka stands now for a hefty 30% of our family members. She is also the best behaved.

I will never be able to describe or even fully understand what happens at the Lion's Foundation between humans and dogs. I will also never be able to express my gratitude to the people that work for that amazing organization, with a devotion and charisma difficult to match anywhere else. The impact dog guides have on people's life is unmeasurable. There are no scientific instruments to detect the change in the quality of life that dogs bring. But we all can feel the impact of what they do.

My gratitude extends to all people involved in breeding, raising and training the dogs. They selflessly contribute countless hours to welfare of dog recipients. Foster families raise the puppies till the one year old and ready for training. It must be heartbreaking to raise the puppy for a year and then give it up. Professional trainers, volunteers, fundraisers, administrators, and not to forget the cafeteria staff - all people I have met in Oakville at the Lions Foundation - are kind smart, patient, and have a sense of humour that was able to lift up many awkward situations. We had quite a few belly laughs, and bonded with our benefactors. The trainers were patient with their trainees, both the canine and human kind. Here is a link to pictures posted on Facebook from our June training session in Oakville.

Have I mentioned that I feel grateful? I do. Thank you Lions Foundation of Canada!

At Queen's Park - day 86

2011-09-01T11:41:00.008-04:00

When I was driving on the familiar, stressful route to Queen's Park I felt the same way I did two years ago, and a year ago, and whenever I was going there. It was like moving back in time. Amazingly, not a lot had changed there. Buses spilling pictures snapping tourists, familiar guards who still remembered us, manicured lawns and indifferent statues.

We cheerfully joined Ontario Autism Coalition protesters at the edge of the lawn . Things were going great for a while but we were very close to fast passing cars and buses, and fire trucks and ambulances, and sirens were going by often and it startled Sebastian a bit.

We went up away from the traffic, and joined picture snapping tourists for a while.

We came back to hold the signs and get people to honk at us. Sebastian decided after a while he had enough and let me know about it in a way that could startle people who are not familiar with him, but he calmed down as we started waking away from the traffic. It was time to go home.

Inka was a star all the way, though it was not easy for her to keep from being distracted: there were a lot of squirrels running around, new fragrant grass, loud sounds, and all those friendly people!

On our drive home I was thinking my old familiar frustrating thoughts, and I thought that sadly, unless protesters start doing something outrageous we will never get attention of the media and politicians. I think we need to get advice from somebody with fresh and ingenius ideas.

Ontario Autism Coalition protest

2011-08-29T10:44:00.002-04:00

I have been living under the rock recently, and partly it was my clear intention do not know what is going on in the big world around me. I retreated to my solitary world like wounded wild animal that can not bear the harshness of the jungle till it gets stronger. But here it came the event that is resounded like echo from our past.

Here is Ontario Autism Coalition announcement:

Join the Ontario Autism Coalition as we wrap a huge puzzle piece banner around the south lawn of Queen's Park to protest the ever-increasing waitlist for IBI therapy in Ontario. Together, we will demand that all parties in the upcoming provincial election announce their policies related to autism. Our home-made puzzle piece banner, constructed from strips of cotton bedsheets and decorated with spray-painted puzzle pieces, will easily stretch from the MacDonald statue all the way up to the Whitney Block, which houses the Premier's office. Please feel free to invite your friends! We'll need lots of hands to hold the banner and some other protest signs while we catch all the northbound traffic. Let's cause a scene!

Where:

Queen's Park / Toronto, ON, South Lawn--meet at the Sir John A. MacDonald statue

When:

Wednesday, August 31 · 4:30pm - 6:30pm

It happened that I had to cancel three appointments I had this day. I am not that busy, but Wednesday was the only day I had any appointments this week. Watch out! We are coming back to our old stomping grounds at Queen's Park.

Sebastian and Inka's first, tentative contacts

2011-06-18T09:58:00.010-04:00

That was Sebastian and Inka's first eye contact when we came home on Thursday.

Gentle touch.

Sebastian likes touching Inka's fur. The marks on his hands are calluses from him biting his own hands, which he does when he is frustrated, or when he is overwhelmed by sensations that he can't deal with. The calluses are softening and getting smaller since he is not biting himself so much anymore.

Inka has soft ears.

Sebastian was feeling Inkas paws with his toes. That is also an exploration.

Meet Inka.

2011-06-17T00:48:00.001-04:00

Dog days

2011-06-14T21:49:00.000-04:00

Today we had a great day. The weater was great. Day did not start smoovely though. Inka was caughing from me pulling her leash so much. It made me think that I was not doing well at all. We had a grooming lecture in the morning. After that we went to off-leash park where dogs were runing as fast as their four paws allowed. It is a real joy to watch them play. In the afternoon Inka was a real starlet at the large and busy mall. She behaved very, very well.
I have pet proffesional who trained Inka for last few months. I saw how attached and responsive Inka was to her. I understand better now Inka's emotional energetic goden retrever ways that show themselves in nervous paws and waggy tail. I have two more days at that amaizing facility and I intend to learn as much as possible. Luckily trainers treat their human traineese with patience equal or may be greater to what their canine students require.

Dog/human training

2011-06-13T20:27:00.007-04:00

I am in Oakville learnng about the dog world. There's lots to learn! I have met my new life partner. Her name is Inka and she is golden retriever/Labrador mix. She's the only blond and girly girl among four very masculine black labrador boys in our training group. I have seen her outrun them and outsmart all them big fellas in the leash-off area.

I am learning a lot. Today we went to the mall and a pet store. I get nervous and overwhelmed more often than dogs did. Tainers tell me that Inka "tests" me trying to establish her dominance and independence. I should respond by "correcting" her behaviour by yanking her leash. I am not quite confortable doing it, since I do not like yanking anybody's chain, and my timing is off quite often. Inka certanly does more of that "testing" behaviour than the more docile labs. But it has only been our second day together, and I hope I will get more confortable in the dog's world soon.

Getting ready for departure

2011-06-11T11:02:00.003-04:00

I am getting ready to go for autism dog assistance training for a week. It is only 30 km away but I will have to stay overnight there for few days to bond with the dog. I am elated, exited and nervous. Sebastian has been very good lately, but on Wednesday he had an intense allergy attack during a very hot day, and every day since his eyes get pink and he wakes up with green crust in his eyelashes in the morning. He takes prescription antihistamines everyday. After the first week of adjusting to them they seem to work some and we only had two major attacks since April. I am checking the weather forecasts and praying for good winds.

Sebastian is calm and very affectionate lately. He climbs on my lap, asks for tickles, follows me, pulls my skirt and laughs, laughs and giggles as if he was telling me funny stories. I am collecting those precious moments like jewels. I stop whatever I am doing and give him long hugs, and breathe in the smell of his hair think life couldn't be better than this.

First Communion

2011-05-31T15:28:00.008-04:00

Sebastian is eight now, and it was quite a shock to me when I was told in the beginning of this school year that he will attend his first communion in May. I remember my first communion:the dress, the hairdo, the artificial white lily all girls were holding as a symbol of innocence, the priest's ornate robe, the smells and sounds of the church.
Time goes so fast. I remember Sebastian being a little baby, then a blur of worry and despair when we he developed autism, and now look, he is becoming a young man in spite of my reluctance and astonishment. He goes through life his own way.

There were a lot of preparations and rehearsals, but at the end Sebastian tolerated the long mass with songs and music in a big, crowded church. He was accompanied by his teaching assistants, Maureen and Gloria, who are his guardian angels during school days, and as they proved they can control his behaviour during difficult social situations like this one was.

Getting ready... It is Sebastian's first suit.

Little bit of encouragement goes a long way...

Perfect worshiping behaviour.

Big moment.

Big church.

Group photo opportunity that was almost missed.

Church looks more interesting upsidedowndown.

Practicing pious pose.

Looking handsome with our old friend Simon.

Looking handsome with mom.

Communion cake!

Swinging at the garden party.

Dog pregnant!

2011-04-26T11:37:00.002-04:00

Yesterday I had a phone call from the Lions Foundation - Dog Guides Canada, informing me that we were matched with a service dog. When it happened my heart skipped: our family is about to expand by 50% percent. How exiting! It will happen in June. I will have to go for a week of training and bonding with the dog.

Sebastian started prescription medication for his seasonal allergies two weeks ago, and it took some time to adjust because it seemed to not be work at the beginning. We went through lots of tears, medical visits and phone call advice. But things calmed down and we just had the most peaceful and tranquil Easter since I remember. Sebastian was running around, laughing asking for hugs and tickles, playing on his i-pad (yes he has an i-pad, I will write about it later), watching "Blue's Clues", swinging on his swing and humming happily.

And now the good dog good news.
I want to get our home and yard ready for the new member of our family. We do not know yet what he or she looks like, so we are going through feelings of expectation that is are a little like being pregnant. Dog pregnant.

IBI waiting lists = denial of therapy

2011-01-31T18:33:00.012-05:00

I haven't written a single post for a long time. The reason was, I had couple of unpleasant things happen, and I was postponing writing about them since spreading my misery is not my favourite pass-time anymore. Procrastination is my faithful although irritating companion, so days became weeks and weeks became months. Things were happening, Holidays came and went, and I was waiting for a whiff of inspiration. And waves of it were coming periodically, but none of them powerful enough to knock me out of my sluggish ways. Untill yesterday that is.

I heard a knock to my door, and there he was: the young father of a two year old boy who was diagnosed with autism just few months ago. He lives just couple of blocks down the street. He had noticed my car window sign, and decided to came and ask "What is it all about?" I saw in his eyes pain and shock, disbelief, and despair, and I also saw strength and determination and love for his little boy. He reminded me of my own self from six years ago. I was moved and at the same time shaken a little.

Why? Because nothing has changed in six years. The difference is, my neighbour was told he will be waiting for two and a half years for the therapy, whereas I was originally told that we would only have to wait a year. As it turned out for us, Sebastian got funding for treatment two years after he was first diagnosed. And we were lucky since a lot of children were waiting even longer. So, in six years, nothing has changed. The situation for parents who learn they have autistic children is even worse then it was six years ago!

WAITING LISTS that last years are nothing but a disguised yet very blunt DENIAL of the only available chance for autistic children to have improved, adult lives. I do not know why this situation is able to go on for so long... Maybe it's simply the fact that society in general does not value kids who have intellectual difficulties. Maybe our policy and decision makers (politicians and judges) are of a generation who grew up when kids who did not measure up intellectually or developmentally were a source of shame for their families and were often locked into institutions so that even their existence was kept secret. Maybe the parents of autistic children are so overwhelmed by the daily realities of coping with and caring for their children that concrete political change seems an abstract and unattainable goal.

Waiting lists are a very effective way of keeping parents of autistic children in line. Dangling that carrot works well. Parents do not think about the fact that the therapy will be taken away just a few months after it started, with an official explanation that their kids are too autistic or not autistic enough to continue to receive this vital service. Professionals corrupted by years on the government payroll laboriously prepare the way to justify such actions by producing discriminatory documents like the Clinical Continuation Criteria. It is difficult to believe, but true.

The public is led to believe that it is about money, but it is not. The word EXPENSIVE is always used when IBI (Intensive Behavioural Intervention therapy--the only clinically proven treatment for children with autism) is mentioned in the media. Yet in my son's case, attending public school for nine months of the year is more expensive for the taxpayers than would be six hours of therapy a day, year round, by a private IBI provider. And as our friend Bruce said once:

"Our government claims that it has fiscal problems and our children have intellectual disability. The truth is our children have fiscal problems, and the government has intellectual disability."

I often wonder about how such a compassionate, self respecting and "progressive" society as Canada can create and tolerate such absurd and senseless, judgmental and cruel policies. It boggles my mind.

I am trying to be positive and optimistic to get myself out of the burnout I am going through. But I have yet to find the positive angle form which to look at this situation.

Giggles

2010-11-07T23:39:00.004-05:00

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!

Thanksgiving Weekend

2010-10-14T11:25:00.007-04:00

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.

Why I do not feel like bloging

2010-10-02T23:12:00.002-04:00

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 ...

First school week

2010-09-14T12:42:00.002-04:00

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....

Nagara Falls

2010-09-06T13:05:00.001-04:00

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.

Ikea

2010-09-03T22:07:00.004-04:00

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!

Last day of vacation

2010-09-01T03:36:00.001-04:00

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.

Greg Sorbara offensive suggestion

2010-08-28T01:42:00.003-04:00

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.

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

2010-08-27T02:50:00.001-04:00

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 .

Clogged toilets and embarrassment

2010-08-21T05:05:00.002-04:00

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.

Dog Guides interview.

2010-08-20T10:19:00.004-04:00

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.

Lazy summer

2010-08-19T09:26:00.000-04:00

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.

Ontario’s Autism Crisis

2010-08-12T20:17:00.003-04:00

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.

Short summer update

2010-08-08T12:52:00.003-04:00

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.

ARO letter to the Commissioner of Conflict of Interest

2010-08-03T10:09:00.002-04:00

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

The ombundsman update

2010-07-30T13:56:00.003-04:00

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.

Kozak v. Toronto District School Board decision

2010-07-29T09:18:00.003-04:00

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!

Taline meeting wiith ombudsman

2010-07-27T19:19:00.005-04:00

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

TED Temple Grandin lecture

2010-07-25T13:16:00.003-04:00

Here is direct link to this lecture om TED.com

Thick Air

2010-07-22T23:42:00.003-04:00

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!

beach

2010-07-20T15:49:00.002-04:00

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.

Daily affirmation

2010-07-19T21:52:00.007-04:00

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.
:-)

White clover

2010-07-18T19:45:00.004-04:00

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.

IVOTE4AUTISM: ILLUSTRATED

2010-07-17T21:48:00.004-04:00

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.

Perfect moments

2010-07-13T23:25:00.003-04:00

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.

Sleepover

2010-07-12T23:44:00.001-04:00

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.

At Queen's Park - day 85

2010-07-11T23:33:00.002-04:00

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.

More Sand

2010-07-10T22:17:00.005-04:00

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

2010-07-10T16:38:00.004-04:00

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!

Heat wave and allergies

2010-07-06T12:13:00.004-04:00

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

2010-07-06T02:22:00.006-04:00

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.

Under the weather

2010-07-05T23:52:00.001-04:00

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....

Sand

2010-07-02T13:38:00.003-04:00

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.

The most expensive 72 hours in Canadian history

2010-06-28T07:54:00.004-04:00

I found a few articles about G20 costs:

New York Times:
Canada Agog at Security Price Tag for Summit

Here are some quotes:

But critics point out that Canada’s security expenses are several times larger than those of other recent summit meeting hosts.
The security costs for the Group of 20 meeting last year in Pittsburgh, for example, was about $95 million, slightly over a tenth of Canada’s budget, according to a study by Canada’s Parliamentary Budget Officer.
Until this weekend, the highest security cost for a Group of 20 summit meeting was $345 million for the 2008 meeting in Hokkaido, Japan, the report said.

The Gazette:

Federal government 'transparent' on summit security costs: Watchdog

Here are some quotes:

...an often-quoted figure for the 2009 G20 summit in Pittsburgh was $18 million for security, yet the figure accounted for only overtime costs for local and state police as well as expenses for visiting forces...

While the report does not detail how much money the government would have saved by using the military for security rather than the RCMP, a source said that it could have been "hundreds of millions."

Any comments? I do not even shake my head in disbelief any longer.

ARO protests at G20

2010-06-26T07:20:00.002-04:00

“Stop the autism crisis! ABA NOW!”
This rallying cry echoed across Queen’s Park today as parents of Autism Resolution Ontario demonstrated against Ontario’s inadequate, neglectful and harmful autism “intervention” policies at the G20 protest (see attached photo).
Despite the confiscation of ARO’s banner poles by police, which were deemed as potential weapons, and ongoing rain, ARO parents persisted in sharing their mission to achieve more accessible ABA therapy for kids with autism in this province with the public and other protesters, and our public display also attracted the attention of
media.

The ARO strategy to protest Saturday morning proved to be wise since chaos and destruction started soon after.

At Queen's Park - day 84

2010-06-25T21:22:00.005-04:00

I was working on Thursday, so I decided to come to Toronto a bit earlier and bring my protesting gear and do a little of pre-G20 summit protesting. I did not know what to expect. The day was hot. I parked my car near King and Younge and marched up with my sign up Younge street. I started seeing more and more police as I was coming up to Queen's Park: standing on the sidewalks, sitting in vans parked on the side of the street. I heard a lot on the radio about concrete barriers and people being checked for identification. Nobody approached me. I expected to see some demonstrations happening at Queen's Park, but what was a total surprise to me was that there was nobody there except a few regular tourist buses. Familiar Queen's Park guards asked few questions as usual--how long I would stay etc. They told me that there had been some protesters in the morning but they left, and it was actually quieter than normal. So I was there alone, looking down at College street, on a bright and sunny summer day, with sporadic tourists walking by. One young man asked me if I had seen a native demonstration. I told him that they left before I came. So I did not see any protesters, only one person looking for some. I did see a lot of police and the helicopters hovering over downtown. I was thinking about one billion dollars and what I would do with it.

Signs left behind by morning protesters.

Day at the beach

2010-06-24T10:33:00.005-04:00

The Hamilton beach is just a 15 minutes drive from our place. You are allowed to swim there if you dare to dip in the cold water. It is never crowded and it is free. Sebastian likes it there very much. He has eaten about pound of the brown sand so far, but slowly he is giving up on chewing it. I let him, suppressing my thoughts about parasites and bacteria--there are things he benefits from learning on his own. The cool breeze is a relief even on the hottest day. In the picture below, Sebastian is bravely entering the cold waters up to his waist for the first time. My son - the fearless explorer.

Short summer nights

2010-06-23T11:04:00.006-04:00

Before we started the GAPS diet about a year ago Sebastian often would sleep just few hours a day. He often stayed up all night after an evening nap, sleeping four - five hours a day for weeks. So when he started sleep longer, for eight to ten and sometimes even-twelve hours a day, it was a very welcome change. After time I got used to this new schedule and stopped associating his sleeping longer with the diet. He is growing up, I thought. And then he had to have his teeth removed and was put, with my consent, on antibiotics for almost two weeks. What was I thinking? Sebastian's stool, sleeping patterns, stimmimg, even some biting reverted to patterns from a year ago. His allergies returned so strong that antihistamines did not work.

Do I think that it is all related somehow? Yes I do. I know the GAPS diet now a little better and we started from the beginning again, but the progress is not as fast as I would wish for. His stool looks better, but only when we are completely off any even cooked fruit, and four hour sleep nights are back. Last night he fell asleep at two thirty in the morning. When he falls asleep earlier he wakes up at four, at dawn. I know that whole bunch of scientists are looking for a genetic cause of autism but I swear if he has any of my genetic material in him, four hours sleep at night is not in his genes!

And also, if genetic and not environmental causes are responsible for the epidemic of autism, why is it that about one in a hundred autistic kids recover (loose symptoms) spontaneously? I have never heard about somebody spontaneously "loosing symptoms" of Down's syndrome, or albinism.

Accident that almost happened

2010-06-21T13:33:00.002-04:00

I have been teaching Sebastian not to step down on the street from the sidewalk since he started walking at ten months old. and since he was two, if the curb was well defined he would stay on the sidewalk. On Saturday I took him across the street from our house to say hello to our neighbors. I was holding his hand most of the time, and since he has known these surroundings since he was very little and we have done it hundred times before I let go of his hand. And the next second he just dashes out on the street straight in front of a passing car. The car was able to sway to the side and stop. We were all very shaken.

Sleepless summer night

2010-06-19T10:04:00.005-04:00

We had an awesome week. Sebastian slept better and did not have an allergy reactions for the entire week. I feel like we are on vacation. The weather is fantastic and we spend a lot of time outside. I found the first red raspberry on the buses in the yard the other day.

Yesterday Sebastian started fussing at about six in the evening. I am not sure if it was allergies or something else. He fell asleep soon after, exactly like a week ago. But this time he did not sleep all night through. Instead he woke up after midnight and is still up at ten in the morning. He is happy and energetic. I played his DVDs, and I only lightly snoozed through the night from being waken up often, and so I am tired now. I am working tonight, so I will have a late night today too. Thankfully tomorrow is Sunday, and I will have more good weather and time to recoup.

Little miracles

2010-06-14T13:06:00.003-04:00

It is hard for me to explain how it feels to watch my sick child suffer and cry from pain for hours and not be able to help him.

Sebastian's allergic reactions are strong this year, and since conventional medicine had nothing for us to offer we tried an alternative naturopathic approach. I made an appointment at Optimum Wellness Clinic. They are very busy this time of the year, but they were kind enough to give us an appointment quickly. The treatment they offer is painless and non-invasive and can not do any harm. I collected a rain water sample from our yard, containing all the allergens Sebastian was exposed to. I cooked some food for the road, gave Sebastian a regular dose of antihistamines and off to Mississauga we went. I was hoping that (what else?) after the treatment the allergies would miraculously disappear, and I did not give him antihistamines in the afternoon. He had the reaction around six on the evening, and so I gave him the Benadryl, and drops, and he fell asleep right after. That was unusual. Lately he has difficulty falling asleep before midnight. I predicted that he will wake up after three or four hours like many times before, but I was wrong: he slept untill before 5 AM. He was very cranky, and crying, and I gave him antihistamine again, and eye drops, and painkiller. He kept crying. I put him in the car and drove to the waterfront park. Maybe there is less pollen in the breeze from the lake I thought. He kept crying and did not want to get out of the car.

What to do with a crying boy early in the morning? I thought about the filtered air they have in the hospital. Sebastian always feels better there. I started driving in the direction of the hospital. We do not have to check in I thought, just hang around in the waiting room for a while. That is all I could come up with at that time. Less than half way through to the hospital Sebastian stopped crying. I turned around and we went back to the park. Sebastian calmed down. We had a long walk.

It is Monday today and Sebastian has not had an allergy attack since. No antihistamines since Friday. He sleeps well. His eczema cleared up from his forearms. A coincidence or miracle we were waiting on for so long. I hope it lasts.

Urgent Care Centre

2010-06-08T06:03:00.002-04:00

Sebastian's belly got better then worse, then worse again. His allergic reactions are out of control, eczema flared up like fresh rose buds on his arms, and when he does not cry from sandy eyes he stims hard. It is hard for him to fall asleep...

After hours of crying, since drops and over-the-counter medications did not work, I called the nurse. She heard his cries, and urged me to take him to the doctor. We went to Urgent Care Centre, Sebastian stopped crying in the car. There were twenty people before us at the waiting room, but we did not wait long. The doctor saw him, told me that I am doing "all the right things" and that the was not anything else she could recommend. "But," I pleaded, "the drops or antihistamines do not help!"

We came home. He was fine, just stimming like crazy till he fell asleep long after midnight.
Another day... down.

Rain Boy

2010-06-06T13:51:00.004-04:00

We had a quite a rough week. Sebastian's allergies were strong, and his belly did not work well. Lots of tears and stimming, and me thinking: how much more of this can I take?
It was raining a lot. Sebastian loves rain. He runs out again and again, puts his head under the rain spout, jumps and runs, exited by feeling of raindrops and wind on his skin. I was watching him enjoying those fleeting but ecstatically happy moments and I thought: rain boy....

Day at Queen's Park

2010-06-03T13:44:00.005-04:00

Yesterday I got up two hours early to get Sebastian's food ready for our day out. My throat was a little sore. I cooked soup, and fried some pancakes, packed extra clothes, and off we went. When we hit the hi-way Sebastian had a happy smirk on his face almost the whole time - he likes car rides. We arrived to Queen's Park little later than planned, and went to public gallery. I expected more parents and kids to be there but I could not spot any. There were plenty of school kids and tourists. I knew that Norrah Whitney and Paul Ceretti were there, and met them afterward. I think that the gallery should be filled up at every question period with autistic and disabled kids who are not receiving the services they need.

Sebastian was very good, and he sat most of the time beside me and on my lap, but when he wanted lie down on the bench we were sitting on I was happy to let him do that since there was plenty of room, and nobody sat beside us. Then the young security guard said we could not do that unless we moved to the back row. When Sebastian wiggled out of my arms and lied down on the floor I did let him do that. He is a little fellow now, but when he will be doing it as teenager-- and it is very likely he will keep reciting these behaviors without further therapy--this will no longer be such a harmless and cute thing to do.

The guards outside the Queen's Park building told me that I can not pull up mu sign when my car is parked in the front of it on the disabled parking spot. So I just snapped Sebastian's picture and went home.

After we came home I was feeling much worse. I fed Sebastian, turned his videos on and watched him roam around. I was feeling very very bad. I had a temperature, chills and a monster sore throat and headache. And that is when my friend Simon showed up. He fed Sebastian supper, gave him a bath, washed not only the the dishes, but also the floors - all when I was sleeping. Thank you Simon! When I woke up around eleven I still had a temperature but I felt much better. Today the sore throat and fever is still with me, but it is nothing I have not handled before with the magic of ibuprofen.

A press release by NDP Leader, Andrea Horwath:

2010-06-02T16:50:00.001-04:00

Horwath raises conflict questions over autism benchmarking review

QUEEN’S PARK – MPP Andrea Horwath says the McGuinty government must scrap the review of its controversial policy of benchmarking children with autism and start over with someone who is independent.

Through Freedom of Information, Horwath has uncovered problems with a Request for Proposals (RfP) and the subsequent contract issued to Dr. Louise LaRose by Ministry of Children and Youth Services in March, 2009.

“Oddly, this RfP was not broadly circulated nor posted on the MERX website, as is standard practice. After going through the F-O-I process, my office found the RfP was highly restrictive and invited one bid . . . a bid raising questions of conflicts of interest,” Horwath told the Legislature during Question Period. “How did such an important RfP become a sole source contract?”

LaRose requested more than $118,000 to conduct the review, but neglected to reference in her proposal document her previous work with the head of the Ministry’s panel on benchmarking. As well, LaRose works for CPRI, a children’s agency in London that is fully funded by the Ministry, a fact that puts her impartiality in question, Horwath said. Formerly LaRose was clinical director of the Thames Valley Children’s Centre and was responsible for discharging children from autism therapy.

“A contract valued at more than $118,000 on a subject as important as benchmarking children,
who might have their autism therapy terminated as a result, should be filled by the best and most qualified candidate,” Horwath said. “But there was no competition, no effort to expand the search and find someone who is absolutely independent of the government and the troubling decision to benchmark children with autism.”

With parents of children with autism who have lost their therapy watching in the Legislature today Horwath called on the Premier to order a new Request for Proposals to obtain an independent review of autism benchmarking in Ontario

Media contact: Sheila White 416-325-2777 or 416-902-0977

2010-05-31T20:44:00.002-04:00

I am posting with permission an email forwarded to me today

Hello Everyone,

This Wednesday morning an extraordinary question will be asked on the house floor about the benchmark analysis. I can't give away too much detail, but if you wish to be present in the gallery the question will be asked about 10:30 am though you should arrive earlier to clear security and be escorted to the upper chamber.

It is fair to say that some very disturbing information has been uncovered and this affects all families in Ontario.

I will be speaking to the media afterwards. It is absolutely paramount that parents understand what the government is attempting to get away with.

If you belong to a list or have private contact lists or a list owner or just know someone who may want to attend can you post this tonight that this is happening . There is an event of importance on Wednesday at Queen's Park that will shocking for those who would like to be present for the questions. That they should contact Andrea Horworth's office at: ahorwath-qp@ndp.on.ca attention: Sheila White, Executive Assistant to NDP Leader Andrea Horwath ( 416-325-2777 ) so your name can be given at security. It will not be a long event, but a gallery of families would be most welcomed to look down upon the house. I believe you must be seated prior to 10 am and you must pass security prior to going up to gallery. You must contact her tomorrow in order to reserve your spot.

I will be on the floor with my son Lucas.

Norrah Whitney
Executive Director of FEAT of Ontario
www.featontario.org

I will do what I can to make it on time, although it means I will have to push through QEW in the pick of the rush hour. But I have good practice - I have only done it couple of thousands time before... :-)

Colours and textures....

2010-05-30T10:22:00.004-04:00

I did not write for the last few days, because what I've been doing lately is poop watching. It seems that we are out of the woods now, but it got worse before it got better. We went through the entire stool scale, and we could add few more types, and many more interesting colours and textures than those already listed. That is how it goes. I am becoming a little self-concious about it because I caught myself extrapolating a little too extensively when people asked how Sebastian is doing. Things are much better now: we celebrated some type 4! But I noticed just a little mucus yesterday still , and the eczema is back this morning.

Eczema might be related to the fact that yesterday we had to double over the allergy medications. Allergies hit Sebastian with a fury. It happens in the evening and in spite of regular over-the-counter antihistamines. So the poor guy is going from his normal happy self to first screaming, followed by a snotty nose followed by red and swelling quickly eyes. It all happens in minutes and in spite of taking the antihistamines. I think he is allergic to specific pollens and he is probably getting hits of them depending on the location of pollinating plants and wind direction. The eye drops would probably be the fastest remedy, but they are very difficult to apply without the assistance of second adult since he resists vigorously.

All those words starting with the letter "a" I would gladly forget: autism, allergy, antihistamine. I bet I could come out with some more...

One billion dollars.

2010-05-27T15:11:00.002-04:00

We are waking up to a little alarm clock radio that is set up to CBC radio. Today I heard,
(did I heard it right?) that Canada is spending over a billion dollars for G8 Summit Security. So in short Canada spends more money to prevent people like me from protesting under the Queen's Park during couple weeks of the summit, than on saving autistic children's future for years. There is money for security officials readily available. They are important people after all. Canadian autistic children - from looking at the government willingness to protect their future - are less important.

No billions for them.

Chicken broth days

2010-05-26T09:30:00.005-04:00

Bodies have the natural desire and ability to get well. But often things get worse before they get better. After couple of days living on organic chicken, vegetable broth and boiled chicken meat Sebastian got better and his diarrhea eased off. When he got briefly weak and slept during a day from die-off I was ready for it and did not worry, but when he vomited the next day when I was expecting him to get better I was taken aback completely. I think what happened is I gave him some cod liver oil, he was drinking a lot of water, and somehow it was too much for his healing stomach. So I kept him at home on Tuesday. His appetite picked up considerably, and he was calm and alert, getting in trouble climbing bathroom shelves, opening toothpaste tubes, spilling my baking soda, splashing water in the sink. He was giving me eye contact and a big delighted smile each time when caught doing it. When he stims he does not get into trouble like that. He runs around with his piece of string or rubber band and hums chewing on it oblivious to most things around him.

I think he could use a couple of days of GAPS intro. I sent him to school today, and I am working tonight, so it is very likely that he will get into bread or other GAPS-illegal, yeast breading food from his babysitter home. It's frustrating, considering how hard the last few days has been for us. All I can do is think that we have a long vacation coming soon, and I will have plenty of time to indulge in all kind of dietary extravagances.

New Creative way of advocating

2010-05-24T07:37:00.004-04:00

New creative wave of autism advocates is a good news for autistic community.
Here is an entry from new blog that uses cartoon strip to explain situation in Autism Community
http://ivote4autism.blogspot.com/

Special Ed for Autism: Illustrated (whole strip)

click on the image(s) below to enlarge

(new image will open in this window -

please hit the back button on your browser to return to this page)

Too see individual images go to:

http://ivote4autism.blogspot.com

Way to go! Congratulations for a great idea!

Déjà vu

2010-05-23T09:00:00.003-04:00

I do mot want to write this post.

After stomach flu followed by two weeks of antibiotics for his teeth extractions, Sebastian's stool and behaviour have regressed to that from year ago. His stools are large and full of undigested food, carrots, and green beans which look as if he just spit them out. He feels the urge to make many poops a day, and when he feels the urge, he often does not make it to the bathroom. I spend a lot of time cleaning after him and washing floors and covers. His allergies are so strong that his over-the-counter medications do not always prevent sudden eye swelling and redness, preceded by outbursts of crying. His stimming is intense and ugly, and the eczema came back, covering his forearms with blotchy red spots.

We are doing the Gaps diet intro, eating mostly broth and cooked chicken. I hope he will get better quickly.

I almost hope.

Oxygen TreatmentOxygen used in fight against autism

2010-05-20T13:13:00.003-04:00

The article is here

A couple of years ago I would run and get into debt just to get this treatment for Sebastian.

Now I think: would I try it if I could afford it? Yes, it sound harmless enough, and if it could help just a little it would be worth it.

Another treatment money could buy goes on the list things we can not afford together with much more essential things like ABA and speech therapy.

Key brain parts normal in autistic people

2010-05-18T18:37:00.001-04:00

Finally some good news about the autistic brain. I want more of those.
Read the Article Here

Jumping Joy

2010-05-17T23:00:00.001-04:00

Yeah, we had a lot of that today thanks to Jannell. She brought Sebastian a trampoline. Until today Sebastian was using our bed to jump on, but he has become too heavy, and our old bed is not giving him a good bounce anymore. Thanks Jannell!

Plum tree help

2010-05-14T10:49:00.002-04:00

I have the best neighbors. Pat came with heavy duty equipment and a family member and they performed a miracle. They raised the tree!

Cross-country race

2010-05-13T22:38:00.000-04:00

Hundreds of kids, colorful shirts, wet grass, children racing an cheering for one another, and one boy who do not comprehend what is that place, that is that noise about and what a race is.
And one mother who wished she took a pill the would make her unable to compare this morning.

Mothers Heart and Teeth Extractions

2010-05-12T23:23:00.001-04:00

I was helping to hold Sebastian down in a dentist chair together with three assistants and a dentist. They are all are very skillful, fast and experienced professionals who specialize with dealing with children. Sebastian was not crying or resisting after his freezing was done, and his four top front teeth were pulled fast and clean by gentle and very precise hands of the dentist. Yet watching it from up close and having to hold him down for this unpleasant treatment made me drop few silent tears I could not hold back: why do I have to witness my little boy suffer? My tears were not about the teeth, but about the bigger picture.

When I was little I was a very good dental patient thanks to my mother. She would explain that I will be exposed to pain, she never try to minimalise it, she would never say it would hurt a little, she would always say: "It will hurt a lot, be prepared, and you can handle it." I was never lied to, and surprised by pain and that is how I have learned to trust my mother and the dentist, and I was always calm. I can not do that for Sebastian. I can not explain him what will happen. I can not explain him the world. I can only watch him suffer.

Nobody has given me an honest warning what my motherhood will be about either. That also doesn't seem to be fair.

Ugly stools comebacks

2010-05-10T10:19:00.003-04:00

Last few weeks Sebastian had extended belly and more irregular stools. After the stomach flu it worsened, and now he is taking antibiotics before his teeth extraction. We have to do it because I noticed large abscesses on his gums coming back again and again.. It happens because his teeth are loose and when bacteria gets under the gums it creates the inflammation. He puts many random objects in his mouth. So we take the antibiotics, and his stools went from bad to worse. Beside loose undigested mess I just noticed mucus and a little bit of blood even. And poor guy needs to go to the bathroom many times a day. And he stims intensely. It is nothing new. He had stools like that for years - that was our pre - GAPS diet era. Now at least I know better what to do.
So we will start next week from the beginning again helping his gut to heal with GAPS ntro.

Mothers Day

2010-05-09T20:22:00.006-04:00

On Friday Sebastian brought from school hand made card and big bouquet of paper flowers . My talented and thoughtful boy! I bet he had some hand on hand involvement in making them. I tried to make him do this three things at the same time:
1 - hold the flowers
2 - look at me
3 - smile for the picture.
He proved himself to be a typical male. He is much more confortable with doing just one thing at the time.

Wind storm and Plum Tree

2010-05-08T23:43:00.002-04:00

We went out for few hours.. When we came back home that is what we found:

My most favourite in the world tree, my best tree friend that made me smile every morning when I looked at it, my wild plum tree that blossomed so beautifully just few weeks ago, tree I planned to spend this summer sitting under in its shade, was brought to the ground by the wind storm.
The power was out too.
I assessed the situation and since the roots were not ripped out of the ground I tried to help the tree by cutting the branches that were hanging the lowest and prompting the it up a little. I will have a lot of work cleaning up and chopping the branches. I really want to save my tree.
Here is how it looks no:

All is well

2010-05-07T23:02:00.001-04:00

There should be nothing more uplifting and inspiring for parent of autistic child than to meet a parent of a teenager and the teenager himself who was autistic and recovered. Well that is what happened to me yesterday. But it was not a positive experience. To the contrary, I was moved to the core of my being but in in the wrong way.

Sebastian last few days has awful pre-Gaps-like stools, and behaviours and intense stimiing follows through. The reason might be partly his stomach flu he went through lately I am not quite sure. When Sebastian stims very intensely he is not easy to watch for me. And we have met the mother and the boy in one of those moments. Sebastian was lying on the floor and mouthing and twirling plastic toy intensely, and relieving his tension by making noises difficult to describe and somewhat similar to those made by a puppy when you try to take away his toy. (It sound like real strong "mmmmm")

The other mother, a very well intentioned woman franticly attempted to help me be explaining existence of SCD diet and behavioural therapy. Well she assumed that I know and do little for Sebastian, otherwise he would be recovering like her son was. Her son by the way, was a very charming and intelligent ant tactful young men, with delicate sense of humour, any parent would be proud of him.

I instead of thanking politely, went on defensive and started explaining that Sebastian is on a diet more restrictive than SCD, and that he went through years of the therapy.
But what I felt inside was a rage. The truth is I know I have done all I could, but I feel I haven't done enough. What is the reason I got so upset.

We went home, and I was still fuming inside. Hours later I was sitting in my rocking chair with TV on but not really watching when Sebastian came over to climb up on my lap and gave me big hug complimented with brightest possible smile. It was his way of saying: "All is well mama, al is well"

Sleepless night

2010-05-06T09:55:00.000-04:00

Before GAPS diet we started last summer we went through years messy stinky stools, extended belly, many irregular sleepless nights - Sebastian often would sleep just three - four hours a night and had great difficulties falling asleep, and had many tantrums, hand and feet biting and aggressive outbursts - grabbing face and/or hair of his caretaker. All of those gradually went away. Incredibly. Sebastian calmed down. I started thinking - oh, may be he is just growing up.

He did not heal completely, and we have to stick to the diet and his stool sometimes just goes bad without a reason I am able to decipher. Last few days his belly become very extended again and yesterday he had several loose and stinky bowel movements, and he did not fall asleep till around two in the morning.

When he was roaming around after midnight I had unpleasant flashbacks from the past, and another confirmation that there is a definite link between behaviour, brain function and digestive system of our kids. Is anybody doing serious studies about it? I keep hearing about governments giving millions for trendy genetic studies done on autistic children. But does anybody heard about any disease that was cured genetically? I haven't. And if we were to wait for genetic causes and cures for all diseases, we would have to close hospitals and medical field for a time being. There would be no cure and known genetic cause for any of them including diabetes, heart disease, viral and bacterial infections.
Rats!
I grew a little frustrated and cynical over the years. Bother.

Autism, lilacks and dreams about future.

2010-05-04T14:22:00.006-04:00

I found myself struggling with writing everyday something about our "everyday struggles with autism". First I thought I was just getting lazy. But now think it is something more than that. My attitude changed. I am not interested in struggle. Not any more. I want us to thrive. No matter what the circumstances.

I did everything I could to help Sebastian running myself worried, sick and ragged. I was getting in debt too. No matter what I did I have never done a right thing and I have never done enough. Good thing is that I have met wonderful people on my way, and it makes me hopeful and full of reverence to generosity of human spirit.

I do not want to scour internet for autism news, that are mostly tragic sad and heartbreaking. I do not want o even hear the word autism. I do not want to hear about another therapy that may be helps and I can not afford anyway. I am not interested in feeling guilty and inadequate and helpless. What is my plan? I am not quite sure yet. Better be something good.

I do everything I can to balance myself and feel better now.

Lilacs in our yard are blossoming spreading an intoxicating smell. I shot picture.

So in conclusion this is a post how lilacs help one mother feel better and even dream about good future.
In spite of the facts, history, and so called reality.
Let it be so.

Deep thinker

2010-05-01T12:34:00.000-04:00

My son is thoughts are very deep..
I wish one day he will be able to share them with me.

Autism Candlelight Vigil

2010-04-30T08:50:00.002-04:00

Autism Candlelight Vigil

Type: Causes - Rally

Date: Friday, April 30, 2010

Time: 8:00pm - 8:30pm

Location: Light a candle (safely) at your place with family and friends

Description

Rally up your family and friends and hold a candle in memory of lives lost, battles won, battles defeated, battles fought, families brought together, families unfortunately separated, autism overcome, sleep lost, sleep gained, mini miracles, voices heard, IBI gotten, IBI cutoff, IBI continued, education the way you wanted it granted, education they way you want the way

it WILL be granted - and a candle to YOU the parent, caregiver, grandparent, friend, aunt, uncle, brother, sister and one with Autism yourself - we salute you- today - to end the month of Autism Awareness but to begin anew.

Grounhog days

2010-04-29T12:47:00.000-04:00

We live in the middle of city close to vast most industrial landscape in Canada I suppose, and you can see what I mean here, here or here.
Yet, Canadian wildlife is so vibrant our little yard is filled up with it. Squirrels chase each other on electric posts, birds chirp all day, raccoons visit at night. Lately we are visited by groundhog. No, he is not just a big rat. He comes to feed on dandelions. We really like him.

More sick days

2010-04-27T23:36:00.003-04:00

Sebastian waken up today with boogers in his nose and green crust covering his eyelashes. He was so weak that he did not even get off the bed. He did not want to eat anything. He was in worse state than on Monday. So we went to the walk-in clinic, and the doctor confirmed Jannell's diagnosis of the stomach flu that has been going around. The doctor told us it could last up to seven days. We came back home reassured. I keep Sebastian well hydrated, and fed him chicken soup and a somewhat customized BRAT diet (minus rice, minus tea and substituting apples with apple sauce)
I hope he will get well soon.

Sick days

2010-04-26T10:52:00.003-04:00

We went to see the fireworks on Friday night. They were spectacular! Sebastian liked the lights, but the noise was a bit too much for him.
He threw up in the middle of the night and had a diarrhea on Saturday. He was better on Sunday but not eating much, and very weak. I decided to keep him home today and it was a good decision because his diarrhea came back. Now I am stumped again. Is it a flu? Is it something more serious? So for now I keep him hydrated, watch , and hope he will get better.

Civil disobedience workshop I missed

2010-04-23T22:40:00.005-04:00

The Liberal newspaper in York Region has published this account of ARO's introductory seminar on civil disobedience:

I missed it this time, but sure will try to make to the next workshop.
In the article they mention that a possibility of being arrested was discussed. It never occurred to me. I can not get arrested. Who would take care of Sebastian?

Chicken skins

2010-04-22T13:55:00.002-04:00

That is what 22 pounds of organic chicken skins looks like. It will make months worth of chicken fat for frying for us. Yum!

ARO’s civil disobedience seminar

2010-04-21T22:58:00.001-04:00

I really wanted to go. It is very sad that parents have to resort to civil disobedience since no other avenues seem to bring any results. But on the other hand it is exiting. After years of writing letters, dealing with uncooperative bureaucrats, reluctant politicians, the entire "system" saying NO! NO! NO! Now it is time to release all that frustration and do something creative, clever irritating, and maybe even fun?

So, I really wanted to go. And right when it was time to do so, Sebastian had a huge meltdown. His allergies are so acute now that even the regular antihistamine dose is not preventing it. I could not leave him in that state, or take him with me. He calmed down after taking more allergy medications, but it took about forty minutes or so, and it was too late to even be late, and so we did not go. Bother.

IBI cut-offs

2010-04-20T01:00:00.000-04:00

ARO (Autism Resolution Ontario) developed documentary on the IBI cut-offs.

World Autism Awareness Day Bill

2010-04-19T19:30:00.005-04:00

So they know. Our parliament members. They know about the national autism crisis. They know about families struggling. They know about waiting lists.
Will they do something about it?

Read all that was said during April 13, 2010 debate in our parliament.

All is well

2010-04-18T23:38:00.002-04:00

Some time ago I read a book by Eckhart Tolle "The Power of Now". He describes there how after years of acute depression he spend a couple of years doing nothing, just sitting and watching the world go by. I am far from finding the state of my inner bliss, but I feel like doing nothing, just looking at our plum tree, birds and squirrels. And I would like to fall asleep and wake up in a world where autism is just an obsolete word, or maybe even something that never never existed. I am not kidding. I am so very bored by the absurdity of it it all.

And I am not inspired or frightened into doing anything at the moment. And since I am not inspired, I think it is better to do nothing rather than commit to random actions. Yet time goes by and the situation calls for a drastic change, and the urgency does not cease.

I am looking at the plum tree that slowly turns from white blossom to green foliage. All is well - I try to think - all is well.

Flower petals

2010-04-16T23:03:00.003-04:00

We walk on delicate white flower petals. Like in heaven.

Now all we need is divine inspiration. We need to know and decide what to do next?

Bride like plum tree and stiming

2010-04-13T23:33:00.001-04:00

Sebastian's behaviour and mood improves steadily. He is much calmer now. Instead waking up crying he giggles before he opens his eyes in the morning. He giggles a lot all day to my utter delight. But days vary, and sometimes he stims more, and sometimes almost not at all. Today he stimed very intensely after he came from school, and that is in contrast to quite a few very calm days when he was sick at home. I wish I had a sixth sense and was able to figure out what happens with his little body.

He grows now, and his front teeth are loose. He still has eczema periodically. I want nothing more but for him to be healthy.

Thankfully Sebastian did not show allergic reactions to our plum tree blooming so beautifully.

I couldn't help myself but post those pictures.

Plum tree

2010-04-12T23:23:00.000-04:00

Our plum tree blossomed today.

Plane crash

2010-04-11T23:35:00.004-04:00

I do not watch the news.

Can you blame me? Most of the time the news is tragic, and hardly ever relevant to our life. I got tired of listening about accidents, murders and robberies committed hundreds and thousands of kilometers from where we live. I got tired of listening about things that do effect me but I have little or no influence over like pollution, corruption, wasting of taxpayers money, increased costs of living and other doom and gloom stories. I realized that news is a consumer product. And watching the news is like eating fast food everyday. It will make you sick like eating fast food everyday does in the Super Size Me documentary movie. I still watch too much TV in my opinion, but I hardly ever watch the news.

This morning I called my mother, who lives in Poland. I did not know anything about the crash of the airplane filled up with Polish officials, including the Polish President. One of our village natives, a retired dentist was in the plane too. I still had a headache--a bad one--and could not quite comprehend what my mother was saying. What tragic and strange news. I cannot think of another time in history in which a country lost so many members of the elite at the same time (during peace time).

We are used to sameness, to one day being similar to the previous day, but our reality can change very quickly and unexpectedly.

Migrane

2010-04-10T22:01:00.002-04:00

I am surviving a stubborn headache the last few days. Sebastian feels good, he is full of giggles and smiles. Most importantly, the weather improved. We have fantastic early spring this year. I hope I will feel better soon. There is so many things to do.

Sick days

2010-04-08T23:58:00.004-04:00

Due to pinkeye, Sebastian stayed at home on Tuesday and Wednesday. On Thursday I decided to send him to school, but they called me almost immediately saying that pinkeye is contagious for ten days and that Sebastian's eyes looked pink. I picked him up and we went to the park although it was raining. In William's, our favourite couch was free so Sebastian had fun sliding from it. I had my fun too having coffee, and we went home. He is getting restless at home - naturally. Feeling for him, I let him run outside on the yard. He comes back wet, cold and muddy but carrying the biggest smile splashed across his face. We change his clothes - a welcome opportunity to practice this life skill - and after a short wile he wants to go outside again. It is cold and rainy and has been since Tuesday. We need the sun to come back.

There are things to be done and decisions to be made that are lurking at me from everywhere - I am not ready. I think I will take some sick days too and do and decide nothing or as little as possible for few day.

Sebastian is seven years old

2010-04-05T23:20:00.005-04:00

The last few days I felt a little less energetic than normal, probably due to the pink eye and all. I was hoping that I would catch a little wave of inspiration in the very last minute and be able to come out with something maybe low key but nice do do for Sebastian's birthday. I felt like celebrating a little. On his previous birthdays I didn't. I couldn't stop thinking about what he should be able to do while passing his milestones. I wanted to stop comparing him to other kids but I couldn't. And when I did I cried, cried and I cried.

Now Sebastian is happy most of the time and much fun, and smiling so brightly that nothing else matters in that moment. We harvest these moments. We have been starved of them for a long time, so when they come, those giggles and hugs, and beaming smiles, time stops and we take notice.

I thought that the pinkeye came and went away, but I was wrong. It came back thanks to all those unhygienic ways of ours. I woke up in the morning with both my eyes itchy and shut closed. When I finally got my eyes open, I saw through the fog on one eye. I did not look very pretty. Sebastian seemed to be OK, only because I did not see well. His eyes were also getting red again. so we went straight to the local Health Centre. We did not have an appointment, but we were seen by our very friendly nurse practitioner. We came back home with two tubes of antibiotic eye ointment.

The ointment did wonders to our eyes, but I did not feel like going out much. We would be spreading the pinkeye around, but the weather was just fantastic. We stayed in our yard. basked in the sun, listening to the birds and looking at our flowers. Sebastian was at his happiest. It was warm enough that I could take his shirt off for some power vitamin D compounding. The unusually warm weather for this time of year was the best gift Sebastian got for his birthday and it came straight from Heaven!

Happy Birthday Sebastian!

Easter Sunday

2010-04-04T23:19:00.001-04:00

Easter Sunday was the warmest record breaking Easter since 1963. So we had the nicest Easter since I was born. Sebastian was enjoying the yard, and I was quite happy to watch him and trying to encourage him from time to keep his shoes on. He would kick them off after a minute.

My neighbor Irene came with chocolate eggs for Sebastian. Later in afternoon she came back with her daughter and grandson carrying Easter dinner plates filled up with food. We sat at the yard enjoying the gorgeous weather and watching the boys play. The good times.

Easter Saturday

2010-04-03T23:29:00.001-04:00

In Polish tradition Easter Saturday is a day to take to church and have it blessed there food that will be eaten on Easter Sunday breakfast. So processions of Polish Catholics march to churches with baskets filled with painted eggs, sugar lams, sugar chickens, and must-haves: salt and bread and piece of horse radish. Baskets are decorated and very colorful and very pretty.
Our basket was minimalistic and understated, but still a valid Easter basket.

Sebastian was a perfect trouper and we were able to visit without major incidents three stores and a church.

After we came home my friends dropped in with an unexpected visit. Our home was in its CHAOS and that is an acronym for Can't Have Anyone Over State. Our home is in that state often I have to admit and I am bothered by it and always embarrassed about it. Even when in considerable order my home is not set to have company, and so I was happy to see my friends, and was happy when they left. I hope to set up some space outside so at least for the summer I will have some space to sit and chat when I have another round of unexpected visitors.

Four pink eyes

2010-04-02T23:32:00.001-04:00

All last week Sebastian was a bit lower energy, bit cranky, but his eyes were bothering him, they were red, so I was giving his some antihistamines for allergies. I kept him at home for a day, but the next day I have send him to school. He did not complain much.

I wake up today with one eye closed shut. I could not open it at all. It startled me a little. Now it is a time for graphic details: the green discharge from my eye glued my lashes together. I washed it off and when my eye opened it was pink inside. The pinkeye. That what was bothering Sebastian all week and not allergies. He had a little green discharge in his eyes, but not much at all, and both of his eyes got pink at the same time. So I thought it were allergies. His eyes look good today, not red at all, but my second eye is itching. If I knew that he had pinkeye I would not send him to school since it is contagious.

It was 25C , 70F outside today. The sudden wave of very warm air came from nowhere suddenly. My neighbor Irene took Sebastian to waterfront Pier 4 Park. I have fantastic neighbors! Irene said they had a great time and Sebastian wanted to jump into the water. I think I have to start bringing him to the pool.

Autism advocacy group increases pressure on provincial government

2010-04-01T23:03:00.004-04:00

I wanted to go and meet with everybody, but the ARO press conference was set at 9:30 and I would not be able to make it after I send Sebastian to school, and taking him with me is entire different game plan, and I wasn't ready or feeling up to it. I missed the six o'clock news, so I do not know if the press conference made it there. But I found few articles about it:
Canadian News Wire Autism advocacy group increases pressure on provincial government
Toronto Star : Fed-up parents push for action on autism services
York Region : Autism group prepares Parents of children with autism step up their fight for services

Spring is here!

2010-03-31T18:32:00.004-04:00

Can you tell?
Our backyard crocuses blossomed.

Sebastian loves staying outside. His eves are pink. He stims, but today he does not take things to his mouth, and I have seen him rotating his objects of interest often.

He lately covers his ears a lot. Even when I just talk to him. I try to keep my voice low. He follows the instructions to pull his pants up, and put your socks on, without actually looking at his socks or his feet. He uses his peripheral vision a lot. He is calmer and more receptive than he ever been.

The day after

2010-03-30T23:32:00.002-04:00

Here is the decision of the OHRC if you interested.
I haven't read it yet. I really can not make myself do it. Part of me still feels rage when I think about it all for too long. And I have important things to do, and anger and despair are not the emotions that can even remotely help me to take care and help to grow such exceptional and delicate child Sebastian is. The day after is the day for rest and distancing ourselves from all the negative emotions, time for regrouping, and doing all the things I did not have time to do before the hearing.

Sebastian was very tired and low energy with running nose and puffy eyes last night. Allergy season is not even quite here yet, and Sebastian already has reactions. So I let him sleep longer, and he did recuperate. Now during the times when his stiming is quiets down i can see him looking around and taking everything in. He is such a delight. We had a great day together.