Wednesday, December 30, 2009

Happy day at home

We had great day today. We spend it all in the house. Sebastian was happy and funny and had fantastic eye contact. I am still startled and surprised by it every time it happens spontaneously. He did not stim much either.

I myself felt very well too, and finished little house improvement project that was waiting to be completed for about five years. Very satisfying. Yes, I use some power tools. Mainly the drill, and I am not very precise, so I often have to do things twice, yet I completed something today. There is much more to do, but now I have a hope again that it can be done.

We had a stretch of days longer than a week now that Sebastian did not have a mayor meltdown. I am getting used to it :-)

As I am writing it I can hear noise is the attic. Animal noises. Are squirrels nocturnal? I have to google it. Bother.

Tuesday, December 29, 2009

Autism Canada advocacy

Taline forwarded me this email, and anybody who is concerned about discharges of our children needs to read it. It is remarkable how government experts offer a lot of slick statements they can not support by any scientific evidence, and how they just choose to not answer to questioning them at their own convenience.

Dear Taline,

Throughout 2009 Autism Canada has been advocating for answers as to why children are being discharged from their provincially funded IBI programs in Ontario.

Please take a minute and read through the letters we have sent particularly the one sent to Dr. Nancy Freeman on July 21, 2009 and the one response we have received from Dr. Bisnaire and Mr. Moore dated September 24, 2009, which does not address any of our questions.

Although Autism Canada has been forthright from the beginning that we would share this correspondence with the public, it was our hope that we wouldn't have to. After you read through the correspondence below please send your comments to us. Either email us at info@autismcanada.org or post your comments on our facebook page. We would be most happy to forward your comments on to provincial authorities.

Please also know that we will continue advocating for services for all Canadians with an ASD with your support.
Click on the below links to access the corresponding letter. Please pay special attention to the letters marked with *


The original article posted by Autism Canada written by Taline Sagharian dated April 2009 titled "Ontario's Autism Cut-off Dilemma".


The letter received by Autism Canada from Dr. Nancy Freeman, Chair of the Benchmark Panel dated May 15, 2009 asking us to make a clarification that children are not being discharged from their programs as a result of the new benchmark criteria.

* The letter sent to Dr. Nancy Freeman, Chair of the Benchmark Panel on July 21, 2007 asking, "... if the government of Ontario is not discharging children from the government funded IBI programs based on benchmarks then what clinical criteria are they basing their clinical decision on?"

The letter sent to the Minister of Children and Youth Services Deborah Matthews on August 14, 2009.

The follow up letter sent to the Minister of Children and Youth Services Deborah Matthews on September 26, 2009.


* The response from Dr. Lise Bisnaire and Peter Moore Co-Chairs of the Regional Autism Programs of Ontario Newwork (RAPON) dated September 24, 2009, which addresses none of our posed questions.


The letter sent to Dr. Lise Bisnaire and Peter Moore Co-Chairs of the Regional Autism Programs of Ontario Network (RAPON), which is carbon copied to the Dr. Nancy Freeman, Minister Laurel Broten and Minister Kathleen Wynne.

Monday, December 28, 2009

Under the weather

I feel under the weather again. In the days like that I can tag along but simple tasks seem to require heroic efforts. Coffee and ibuprofen "breakfast" helps a bit. Scary thing is that when I have googled Lyme disease symptoms I discovered that I have many of them. The fact that I had meningitis after the trip to Poland over a year ago makes my suspicions stronger. It is quite possible that I have it. That is rather scary. I have met people suffering from Lyme disease when they were protesting under the Queen's Park. It is not a good illness to have.

Sebastian is in good mood, we laid in bed singing songs and counting toes for over an hour. He is so good lately :-) I love everything about him. His smile, the way he looks around, the way he jumps and how stomps his feet, and how his hair that is too long now stands up on his head like little antennas.

Sunday, December 27, 2009

Christmas Day

During first week of school brake we were getting to bed everyday a little later than day previous, and so on Christmas Eve Sebastian fell asleep after one in the morning. I had to drop him off before seven in the morning since I had to be at work at eight.

I went to work on Friday to do Christmas branch. It is tradition to many to take go to church and after that treat themselves and their loved ones to brunch. The room was filled up. I noticed many middle aged children assisting their elderly parents. Branch is festive enough and I think perfect solution for people who have two sets of people to spend their Christmas with. They can do branch and dinner, and keep everyone happy and attended.

The harp lady was playing next to seafood station. The food was plentiful the music mellow surroundings luxurious. I expected that it will be over by two at the latest, but I punched out at five.

I came to pickup Sebastian at dinner time bit after six. He spend al day with my neighbors, and was opening presents from under the tree with kids, but he was good and did not cause many troubles. He was tired and fell asleep soon after we came home. I was hoping that he would be tired enough to sleep all through the night. He was not. He waken up at midnight. I was not happy. I was tired and had a huge headache and was fighting a little bug, and all I wanted is to go back to bed. Thanks heavens for ibuprofen! Sebastian joined me in bed around 5AM and we slept till noon.

It was two days ago and I am still tired. But that is may be because I am fighting a little but stubborn bug. Sebastian is good like a little angel. He smiles and gives a lot of hugs.

Thursday, December 24, 2009

Polish Christmas songs - Koledy

So I am cooking, and I put Polish Christmas songs on and I am almost too transported in time and space to effectively complete simple culinary tasks like cooking potatoes. Here is a taste of the music.


And here is some Christmas carols fr from Polish Tatra mountains by famous Tutki family band. Oh... I think I am homesick.

Wednesday, December 23, 2009

Pre-Christmas rush

We went to Polish store, bought some dried mushrooms, and peas, and pound of homemade bacon, and jar of sauerkraut for cooking. Sebastian was good in the store except of the moments when he was grabbing the bread from other shoppers carts.

I called my mom to make sure I have the recipe for "góralska kapusta" right, and so we are now ready to start cooking. Kapusta trespasses Gaps diet a little since it has potatoes in and a little bit of flour, but this is smell and taste of Christmas Eve of Polish mountains where I grew up, so we will have it without modifying the recipe much, but taking out the gluten.

Yesterday a little package came from Saskatchewan filled up with aromatic handmade from organic ingredients soap. The smell gently fills up entire room. The soap was made by mom of a boy on spectrum like me. I admire her for it, because I do have trouble with kipping up with my dishes and laundry, and doing something so involved and labour intensive like high quality handmade soaps must be very difficult. René has chosen big name for her small company and I like it a lot. Dominion Handmade Soap Company is a grand name and says it all.
I have never seen how soap is made, I just can imagine the big pots, and trays, and smells, and I think that that is one of the things I would like to put on my "bucket list".
So the Christmas this year forms it's magic atmosphere by mixing unique scents and sounds in our little home - it is a little like time and space travel without going far.

Monday, December 21, 2009

Christmas decorating.

Since Sebastian was born we always have had a real Christmas tree up. The first one was the best. I did not have any decorations, so I have made some traditional straw and tissue paper garlands, and I baked ginger bread, decorated it with white icing and hang up on the tree. It smelled fantastic, it looked awesome. It was the best and the happiest Christmas tree we ever had.

This year I do not feel up to getting the tree up. I worry that it might make Sebastian's allergies worse, but may be it is just an excuse. So I was not sure what to do till Sebastian after his last day of school came home with backpack and bag filled up with huge handmade christmas decorations. He may be even "lend his hand" making some of them thanks to his teachers. I hang them up in the window, and here they are spreading Christmas Cheer!

Sunday, December 20, 2009

Winter allergies

I was talking on a phone with a friend yesterday, and I was telling her how great Sebastian is doing lately. I was telling her how he hasn't had an allergy attack or a tantrum for weeks, how his eye contact improved so much that his therapists, teachers and and even his school principle noticed. And I probably jinxed it . Just little while after I hanged up Sebastian started having strangest stims: He was waving his arms and shaking his head and he was making loud noises. It lasted for over an hour. when it was bed time, we went to bed, but he was getting more and more agitated and intense, and eventually he blew up to full blown tantrum and to puling my hair. I was trying to figure out what he ate that did not agree with him. Eventually I turned the lights on, and I noticed that his eyes are red and swollen. I administered some eye-drops (not an easy task), and antihistamine, and he quieted down and fell asleep in twenty minutes. He is fine today.

I do not know what triggered his allergic reaction. I cleaned up the ceiling fan and cured cast iron pan. Truly I have no idea what happened. It makes me fill like I have no control over our environment, and no ability predict and prevent my child's suffering. It took me over an hour of helplessly watching him being in pain to realize what really is happening and that he actually is in pain. Being so helpless is very frustrating. I wish I had one room in my house that would have filtered air so we could hide in there. I would also like to have a house with heat in floors and not from dusty ducts blown by furnace.
I wish...

Friday, December 18, 2009

Banquets

I has been working lately more since time before Christmas is the most busy time in banquet business. Recession trimmed off Christmas parties by more than half last year, and this year was even leaner. Working banquets is a little like playing sports. Each function waiters are divided into two people teams, and each team is assigned number of tables anything from one ( on very very fancy parties) to five or eight when short of staff and menu is simple, and client has lower expectations, or when it is a buffet.

People I have been working with are born mostly outside of Canada. I will mention just a few countries in random order: India, Poland, Bangladesh, Pakistan, Ukraine, former Yugoslavia, Romania, Greece, Russia, Italy, England, Portugal, Mexico, Ecuador, Hungary, Iran, Nigeria. During serving each team in order to be efficient and fast must share the work load and communicate well. In this circumstances it is easy to very quickly to get to know a person character and work ethics. Personality conflicts reinforced sometimes by cultural differences are erupting often, but the common goal is to get the job done, and more often than not natural human tendency to avoid conflicts and common sense wins.

My work colleagues have been putting up with my absentmindedness, and has helped me countless times when I was falling behind, and were always there to give me little tip or advice or a nudge when I needed it.
Through the years I have directly experienced so much of human kindness from strangers from all over the world, that that gives me hope for entire human kind. So here you are: The Holiday festive spirit emerging ever so gently.
:-)


Vanity room we work most often at.

Wednesday, December 16, 2009

School meeting.

We had today another transition meeting. I am very impressed with what school staff is doing to accommodate Sebastian. Sebastian likes it there too. He has lots of new toys, entire classroom to himself, less demands on himself, and also he has attention of great women he enjoys a lot. Lately he is much calmer and does not have major tantrums.

Sebastian now is in school so Chedoke is no longer responsible for Sebastian speech development. School is. I asked about speech therapy for Sebastian at school. There is not any. There is a possibility of speech therapist assessing a child, and then the speech therapist would pass the instructions of exercises to a teacher or teaching assistant. Great idea! All school kind could be treated like that for not only speech impairment, but psychological, and physical conditions. Just show the teachers how and what to do it. I bet that with proper instructions they could effectively perform not only speech therapy, but also physical therapy, may be also easier medical tasks like immunizations, blood tests, and who knows one day may be one day even simple appendectomies.
And if parents want speech therapy for their children from speech therapist they have to pay. That is how the system works. Poor kids can lisp.

Teaching assistants are wonderful people though. Sebastian teaching assistant Maureen and her sister gave me enormously huge Christmas hamper filled up with gifts. We are all ready for Christmas now. Thank you.

Tuesday, December 15, 2009

Car fixing

It was $338. One our labor $80 and two pieces of metal about 12 inches long with two wholes on both ends. Over $100. Each. They looked like they should be worth $10. Here is the picture:

Taxes topped it off. But what am I complaining about? I have a car I can not afford, and mounting debt but car is running and has the back wheels are not wobbling anymore, and car has snow tires on.

Today was Sebastian's last day at Children's College. No happy flip side here.
But there is gratitude and lots of it. I will never be able to express how thankful I am for endless hours of hard work, and huge hearts of every person at Behavioural Institute. You have to experience it like I have had to believe it.
Thank you.

Monday, December 14, 2009

Changing snow tires

Today is second last day of Sebastian's therapy. The weather is mild, I am at Etobicoke Costco changing oil and summer tires to snow tires on my car. I think it is an end of an era in our lives. I will not miss driving in all kind of weather on insanely busy highways. I will not miss getting up before sunrise for most of the year. But Sebastian needs therapy. He is doing remarkably well lately. His eye contact is amazing, his tantrums almost vanished, he understands and follows instructions like never before.He also needs healthy house and clean air. How am I going to o that?

People who changed my tires noticed that my suspension is dangerously loose. I went to the mechanic. It is going to be about $400.

Saturday, December 12, 2009

How Government works

I received that humorous email from a friend, and sadly my observations of government works around Sebastian's therapy and especially his dischargetells me that this joke is frighteningly close to the truth. In case of autistic children government is cerating commition after commission and documents after document helping them discharge kids from therapy instead simply direct the resources to the most capable and efficient people who can deliver the treatment.

How Government works


Once upon a time the government had a vast scrap yard in the middle of a desert. Parliament said, "Someone may steal from the scrapyard at night." So they created a night watchman position and hired a person (bilingual, naturally) for the job.

Then Parliament said, "How can the watchman do his job without instructions?" So they created a Planning Department and hired two people; one person to write the job description and one person to do time studies.

Then Parliament said, "How will we know the night watchman is performing the tasks correctly?" So they created a Quality Control department and hired two people; one to do the studies and one to write the reports.

Then Parliament said, "How are these people going to get paid?" So they created the following positions, a Time Keeper, and a Payroll Officer; then hired two more people.

Then Parliament said, :Who will be accountable for all of these people?" So they created an Administrative Section and hired three people, an Administrative Officer, an Assistant Administrative Officer and a Legal Secretary.

Then Parliament said, "We have had this organization in operation for only one year and we are $18,000 over budget; we must cut back our overall costs."

So they laid off the night watchman.

Thursday, December 10, 2009

Thinking Positive

I am trying to think about something pleasant today while I am washing dishes and doing laundry. But whatever I think about is depressing. The upcoming Christmas I will spend far away from my mother, I am in substantial debt I go myself into by loosing the track of my money while I lived spending just on necessities, and my fight for Sebastian's future - well that is not going well is it?

Things could be much better than they are. I want to change a lot about our life. I want health and joy and laughter and family and happiness and warmth all around us and friends and healthy house, and great view from our windows. There - here we have some positive thinking.

Tuesday, December 8, 2009

Too much again

I was working today and will work tomorrow, Sebastian and I are fighting a bit of the cold, I hardly slept last night, and it is going to snow tomorrow, so I am concerned about the road because I do not have my winter tires on yet. That translates to: I am too busy, tired, sleep deprived, sick and stressed. In times like that I am functioning on my survival "automatic pilot". By the miracle it gets me through but it is not fun. And I wander who is in charge of my automatic pilot?

Monday, December 7, 2009

At Queen's Park - day 78

Cold and snowy! First snow flurries during my history of protesting.

Good news: I "fixed" my cell phone camera. The problem was the protective plastic got scratched and that make picture appear blurry. I did not know that that was happening before I put my glasses on. Here are before and after pictures.



Sunday, December 6, 2009

Noodle night pictures.

I was working and closing last night, so I came home little before 3AM. Sebastian woke up at 7:30 but he let me snooze for about two hours. He stayed in bed with me from time to time trying to open my eyes with his hands, and sticking his fingers in my ears, but all that in a good mood and smiling all the time, in spite of his nose covered with green dried up buggers. He has running nose, I cough a little and have a headache, but we are both in good spirits today.

Simon send us pictures from our night on the town in Vietnamese restaurant last week.


Friday, December 4, 2009

PD Day

Today is Sebastian first PD Day. It means it is week day and he does not go to school. I am not familiar with school ways, but what do working parents do when their young children have Pd days?
I was working yesterday day and night, and today I work dinner. This year hotel is less busy than last year, and last year it was about half of the business we had in previous year. But the weather this year is fantastic. No snow in November first time in century and a half. I enjoy the global warming in Canada.

Wednesday, December 2, 2009

Night in the town

Today after school straight from school bus I put Sebastian to the stroller and we went to the post office. He walked and run a bit, but mostly enjoyed the ride quite contently. We stopped by in the You Me art gallery. We have been coming there on our way to downtown since Sebastian was very little. Now it is more difficult than when he was smaller. I hope it will get easier with time to go with him places. Sebastian was running around, touching walls and paintings and grabbing things. the owner and his friends were very kind to us. It was worth it to stop by. Walls are covered with large , black on white paintings painted on recycled material. Stark, decorative and rich at the same time - just stunning.

In the post office located in the drugstore things got difficult because shelf filled up with potato chips was standing just by CanadaPost counter. Sebastian really wanted them. We rushed from there as soon as we could. Since our friend Simon lives near by we went to pay him surprise visit. We were treated to little tea, and little wine and delicious bowl of beans. Simon is moving about month from now so it was probably the last time we could pay him an unexpected visit like that. Simon's place is filled up with a lot of little trinkets, but we managed not to break anything.

We reminisced a bit since it is exactly seven years since we moved to Hamilton. Simon and I decided to go to our favourite Vietnamese restaurant for a bowl of rice noodle soup to celebrate. We were taking Sebastian to that place when he was just few months old. He was very little, but he was cracking us up when he was sucking in amazingly long rice noodles. Sebastian has harder time now to sit still in the restaurant simply because he does not fit anymore in the high chair, and his constant compulsion to move is impossible to control. Frankly, it is exhausting. We have chosen a corner table so I could block him from running around, but we had to take away salt shakers and all tray with chopsticks and spoons and napkin dispenser to prevent him from putting things to his mouth and dropping something on the floor. He licked the table and the windows - we could not take those away. The soup was delicious and filling, and since we did not have any major accidents enitre event was a succes. After that we went to grocery store, and that was busy day for us.

Simple activities are challenging and just getting through them without major mishaps is a big succes. Sebastian could benefit from doing things like that more often, but it is exausting and sometimes simply unsafe to take him to many places by myself. I am really not concerned with people looking at as. Most of the time I am so busy watching Sebastian and making sure he is safe, I do not have time to look at people reactions to us and do not bother even explain why he is behaving like that. Sebastian's strange behaviour is now more noticeable for strangers and more startling for them now when he is older. I hope he will get more understanding and easier to control because we have a lot of places to go and things to learn.

Tuesday, December 1, 2009

At Queen's Park - day 77


In spite off Tories'Queen's Park HST stand-off that was happening inside of Queen's Park, outside was quiet. Memorial of one of the new east European countries, and a blind men with his canine and human companions having picture made with a framed picture - may be a bravery reward.

I did not find my camera yet, so this pictures were made with my laptop.

Monday, November 30, 2009

At Queen's Park - day 76


The weather is sunny and so perfectly crisp. it is impossible not to smile and not to be in a good mood. Truck drivers are here to protest against 11-week driver testing strike. I am making pictures with my laptop since I misplaced my camera so effectively that I can not find it to this day. I hope I did not leave it on the roof of my car and parted with it for good.

Last night when I was cooking, I found on TV "Dog Whisperer". What a great show, and what a great guy! I saw the other dog training show before, but that dog trainer was doing more of the dog owner bashing - not that they do not deserve it most of the time. Cesar is different. He is gentle and funny. He talks a lot and demonstrates how dogs are very tuned in receptors and amplifiers of owners energy. Nervous owner will make nervous dog. Cesar talks a lot about "energy" people bring into the situation.

I was wandering what kind of "energy" I am bringing in into this world. And what Sebastian feels when he is around me. I think I bring a lot of frantic frequencies. I am doing this and this and that, and nothing really comes out right. I am fearful too. And universe proves me right, my fears and apprehensions prove themselves to be justifiable.

I know I should be calm. But it is hard when I can not concentrate and even remember what is the next thing I should do. In moments like that I resort to doing whatever I stumble upon. It creates problems, because important things often are not getting done on time. It is very scary way of living too . Like swimming in muddy water. But there are days when fog lifts up, and I feel past and future, and I remember, and I think for a moment that I can conquer whatever I have to conquer. Unfortunately those are sill only a fleeting moments, but they come more often now. I need to have more of those moments if I am ever going to be successful leader of the pack, even though the pack is the small one - Sebastian and I - we have a lot to overcome.

Sunday, November 29, 2009

Domestic life.

We slept eleven hours beside crack open window today. It is unusual for Sebastian to sleep that long. Maybe he grew half an inch last night ;) It is a very good sign that e is getting better.

I was planning on getting up early and doing some paper work, but instead I was dreaming about traveling to China. So I am well rested too.

I will cook a whole chicken to make enough broth and meat for all week. I have pumpkin pie butter almost ready to bake in a fridge but I have run out out of honey. I will make some apple sauce today too. Being so domesticated does not come naturally to me. It takes a lot of effort and planing. Not my strong points.

Saturday, November 28, 2009

Giggle-maister

Sebastian had today the best ever speech therapy session ever. Again. He has great eye contact, and laughs and giggles a lot from the moment he wakes up. It is unusual and different to what I am used to. I am soaking up every moment of it.

After the session we went to farmers market, and he grabbed an apple and took a bite so quickly I had no chance to react. It is too early for him for raw apples yet. They all coming out of him almost in the same form they are coming in, but I bought half a bushel of Northern Spies. I love that name, and great crispy taste, and how great they come out cooked. We will make some sauce.

Yesterday I was working most of the day and all night, and next week will be very busy. It will be a logistic challenge for me.

Thursday, November 26, 2009

Friendly Universe.

"The most important question a person can ask is, "Is the Universe a friendly place?""
— Albert Einstein


Einstein hypothesized that the answer to this question would determine a person's destiny. I was living in a friendly universe for decades. Lately I have to work on that perception. Some days I have to work on it very hard. Some days I can not keep up.

Wednesday, November 25, 2009

Look what I can do!

Yesterday I was at the Children's College to observe Sebastian in action. He was doing very well. He was putting together four and six piece puzzles, matching the pictures to the objects, and objects to the pictures, picking up dropped objects, putting toys in place, looking through the book, turning the lights off, requesting toys with pecs, going to the toilet and pulling his pants up and down, eating his snack with the spoon, asking for water, taking the dirty fork to the sink. He is able to follow a lot of instructions. He pays attention and responds, and looks to the therapist for feedback. Big stuff.

In the "cabie" next to Sebastian's was a boy about eight years old, and higher functioning than Sebastian, who just started therapy couple of months ago. He was resisting vigorously, and had a really tough time following instructions.

I was thinking "My God! Where Sebastian would be without therapy?" It is even hard to imagine. He would be much worse than any kid I know. I remember when he started at two years old, his first sessions lasted two hours. He would scream full throttle with a high pitched voice non stop for an hour and a half. It sounded as if somebody was trying to peel his skin off. He would stop only from sheer exhaustion. It was very hard to listen to. But I knew nobody was harming him. The therapists were saying "Do this" and asking him to put a block to the bucket.

I could not teach him what he can do now by myself. I am infinitely grateful to all the people who could.

Tuesday, November 24, 2009

Clogs

There are not very many things I can think of that Sebastian learned to do spontaneously. Wearing my slippers or clogs is one of those things. First he was walking with one shoe on, and I did not think it was quite intentional but now he puts two of them on. Sometimes he even manages to put them on the right way and walks through a couple of rooms till he looses them.

... little things ...

Monday, November 23, 2009

At Queen's Park - day 75

The weather was fantastic. I had an interview with a journalist from Ryerson.

No picture today. The battery died in my camera, and my cell phone camera is broken.
Now I can not find my old breaking down Coolpix, so I am not recharging the battery - there are not going to be any pictures tomorrow either. You will have to believe my word that I was there. Bother.

Sunday, November 22, 2009

Half full...

I do not tolerate sleep deprivation like I used to. It takes me couple of days to recover from the times I work the dinner shift at the hotel, come home between two and three in the morning, and sleep about four hours, till Sebastian wakes up. The day after a shift like this goes a little slower than normal. Sebastian roams in his pajamas, we do not go out unless I have to, and I have harder time to think and plan the next thing to do. When I cook I do not keep up with cleaning after myself, the house becomes more messy than it was a day before, and I have a hard time remembering what I have to prepare for the next day. And that is when I work on weekends. When I work on weekdays, I have to drive Sebastian to school the next morning, and it is even harder.

The pay for each function at the hotel is different--the gratuities depend on the price of food and the number of servers. Amount of hours differ too. Mistakes can happen in the accounting department. I was never taking notes and checking my paycheck stubs like other servers did. I finally did today, because a lot of my colleagues mentioned that a lot of mistakes are being made on the payroll. In the two weeks period I worked in this busy time of the year, I covered three dinners and two lunches.I was not payed for both lunches, and for closing two of the dinners. A few hundreds of dollars mistake was made four out of five times, to my detriment.

So the question is, of course, how many similar mistakes have happened over the years? I will never be able to track it. And you know what? I was not even upset much. Lately I am taking such staggering blows from life that that felt hardly like a pinch. I am stressed to the limits, and like with everything that happens in my life I can only blame myself for not checking earlier, for being too trusting and passive, for not being able to concentrate, remember, envision, predict, reason. Anyhow, I am doing all I can, so there is really no point or benefit in involving emotions and getting upset over the matter. But I remember times when I would not remain so stoic.

On the "glass is full" side of life, Sebastian had a wonderful day running around in his flannel green Hulk pajamas. No allergies, no tantrums at all. Lots of smiles, hugs and giggles. Great eye contact, and fantastic looking stool again after a long messy streak. I decided to do the Gaps diet intro again over the holidays. We keep trucking along.

Saturday, November 21, 2009

Giggles

Sebastian woke up today full of giggles.

When he was younger he would often wake up crying. And he would keep crying as I was dressing him up and putting him in the car. And he would cry most of the time we were driving on QEW - the busiest stretch of highway in North America. Many many screaming minutes, hours days. He would get quiet when the car was moving fast, and start screaming again when we were stuck in stop and go traffic jam.

To have him giggle and give hugs from the moment he opens his eyes is most delightful. I hope I will have a chance to get used to that.

Friday, November 20, 2009

Ombudsman, ombudsman...

Here is the answer of ombudsman to concerned parent complaint about PPM survey.

Click on the image to enlarge.

I will not comment other than Shreck is on TV right now. That animation seems to me less surreal to me at the moment.

Wednesday, November 18, 2009

At Queen's Park - day 74



Good weather for window washing at Queen's Park.
My cell phone camera broke down and this is last sharp picture I made with it.

Tuesday, November 17, 2009

At Queen's Park - day 73



The weather was so gorgeous, it was impossible to be in a bad mood today. Brian Coldin was there, with his mother this time. She is a delightful lady. We had wonderful chat, and time passed quickly.

I had to leave early to go to Children's College for a monthly meeting about Sebastian's progress, and that was very encouraging. He is still making progress in spite of reduced hours. He is focused and matching his pictures to objects with ease. What is more important, he smiles and is looking at the therapist's face for feedback. That is an accomplishment not to be taken for granted!

Hearing this makes me think that it is worth the effort to help him, because he is putting so much effort into doing his part very well.

Monday, November 16, 2009

At Queen's Park - day 72


The November weather has been so kind this year that coming out is just a pleasure. I spent a long time talking to two workers, one originally from Jamaica, the other one from Trinidad. That was a lot of fun.

Sunday, November 15, 2009

Eye contact

Sebastian looks at me when he requests something, or wants to know what I am saying. That bold and spontaneous eye contact startles me. I am used to non-existent, or only when prompted glimpses that last only a split second. I am used to him using his peripheral vision a lot. When he looks at me and smiles, I am surprised. But it happens lately quite often, and I am grateful.

Saturday, November 14, 2009

Ombudsman Update

I received that email from long time autism advocate and parent of autistic child Taline.

"Dysfunctional systems are often maintained through systematic denial, failure or inability to see the reality of a situation. This denial need not be conscious, intentional or malicious; it only needs to be pervasive to be effective."
Warren

I spoke with the investigator at the ombudsman's office this afternoon. Their response to my concerns regarding the ministry's monitoring of PPM 140, the ministry's responsibility in the provision of IBI and education together through existing opportunities (eg: Provincial Demonstration Schools, Alternative Schools, Section 23 Programs and PPM 81) and the inconsistency between schools in accepting children with autism to attend public school programs with direct support of IBI/ABA instructor therapists (both in regular classrooms and separate classrooms), is nothing short of a complete disappointment. I have asked that they send me their response summarized in a letter and I hope to receive it soon. In the meantime, this is the information they shared with me:

1) Re: the monitoring of PPM 140 (ABA in the schools) - The ministry will not be soliciting feedback from families but rather only from the boards. The boards are welcome to take parent feedback but this won't be mandatory. The ministry will only be analyzing feedback from the boards. I doubt that detailed data will be part of the feedback. The ombudsman's office will continue to monitor the ministry's monitoring of PPM 140 but feel that the concerns at this time are to do with training and educating staff and that this is a budgetary issue which their office can't interfere with. It's not impossible to foresee that the ministry will at some point rely on the "limited resources" argument when cornered on the lack of appropriate ABA training in the schools. Autism Ontario was consulting at some level to a new survey the ministry was preparing for parents to complete but I have not heard anything more about this.

2) Re: the IBI/ABA instructor therapists allowed in some schools and not others - I was told to ask for clarification of the "space" wording from the ministry myself. The ombudsman's office did not seem troubled by the fact that the school board thinks they are fulfilling their obligation to educate my son and others by sending them to the local library or community centre.

3) Re: my question about the ministry's ability to deliver education and IBI together through existing systems (eg: Provincial Demonstration Schools, etc.) - No response on this. I assume they can't do anything about this either.

I can say with full confidence that the ombudsman chapter is now officially closed in the Ontario Autism Crisis trilogy.

Taline

Friday, November 13, 2009

Another school transition meeting

We had another meeting arranged by Dr. Reitzel with the participation of school representatives and so-called transition coordinators. I have learned that I can be assisted by them. How? They will meet me and discuss challenges I am encountering regarding Sebastian and then they will consult me, and give some advise - since they are government hired experts who know how to tackle challenges arising when upbringing autistic children. I wonder if the government has similar services for, say, homeless people. Homeless people could use some advice from people who have never lived on the street, and hope they will never get there thanks to the government job they have, who are not board-certified psychologists, but who are really good at giving advice for people. They have been doing it all their life. Homeless people's problem is the lack of a roof above their head, so will they benefit from limited time offer, tax payers funded advice from an expert. NO? Our problem is that the therapy Sebastian's so desperately needs is being taken away from him, but I (the mother of the child) can use some advice - think how good it will look on the reports! It will be called support given to a parent, and successful transition of the child to a school system.

A Children's College representative was present there too, and her dialog and exchange of information with the school staff was very positive and useful. The ladies from St Brigid's School are fantastic. They are going above and beyond their call of duty, I am very thankful and admire them for it.

Thursday, November 12, 2009

Dry Nose

Sound and smell of Sebastian breath is the sweetest and most calming sensations for me right now. After years of chronic running nose and congestion, and the breath that smelled like a dead mouse, he breaths rhythmically and at ease when he sleeps now and his breath is sweat and fragrant most of the time. I think now his congestion was caused by allergies, but I did not realized it for years. It started when he was three and started attending kindergarden, and I was told by everybody that kids go through series of colds before they get immune to bugs circling around. Sebastian's running nose lasted for weeks, than months, than years, we got used to the way it was. Finally I realized it is not "normal", but really I did not know what to do about it. Surprisingly we got a brake after alternative allergy treatment more than a year ago. Now wet yucky nose comes back sometimes, but is not a constant companion. Dry nose is something to celebrate in our family.

Wednesday, November 11, 2009

Day without a tantrum

Yesterday we had a day without a tantrum. We spend a lot of time hugging and wrestling, singing jumping on the bed and looking at the books. Sebastian is such a joy and delight when he feels well.

I was hoping for another day like that but soon after he came home he started crying. And fifteen minutes later he was crying louder and his eyes were pink and starting to swell. I gave him antihistamine and twenty minutes later he calmed down. He had another tantrum few hours later, and he calmed down watching Blue's Clues. So how comes that one day he is fine, and has an allergy reaction the next, and than another tantrum, can only suspect but do not really understand the reason? I wish I new more, and felt more in control.

I was working lunch serving two hundred bankers who bragged how many hundreds of millions they have made.

At the Queen's Park Celebrations went on without me.

Tuesday, November 10, 2009

At Queen's Park - day 71


Today I was happy to see Muskoka worrier for justice Brian Coldin. He came with his friend to help him erect his tall and heavy cross shaped sign.



Chinese tourists listened to explanations of what his protest was was about, with help of their translator.



The George Brown statue was getting cleaned up for tomorrow's Remembrance Day celebrations. A lot of VIPs will attend. I know about it because I had a phone call from Queen's Park Security around 5PM today letting me know in a very polite way that there will be no room for me on Queen's Park lawn before 1PM tomorrow. I promised to cooperate and stay where the general public is allowed, on north side of the park. I really do not want to cause any unpleasantness for the VIPs that the front of the Queen's Park is reserved for. They waited all year to put on red poppies and celebrate their Remembrance Day in peace, and not be distracted by a middle aged woman (is she quite sane?) with a pathetic sign over her head demanding therapy for her autistic child.

I was going to go and watch from afar, but I was called to come to work the lunch shift at the hotel around 8PM. Lucky VIPs. They were in danger of having a glimpse of me, and then they would have to pretend they do not see me. How awkward.

Monday, November 9, 2009

At Queen's Park - day 70


The weather is very beautiful these days. I am sitting here, comfortable warm in the sun watching workers do their thing. But inside I am anxious, my mind is racing and I can not stop it.

I am in a very peculiar position to observe my own cognitive powers fluctuate. There are days when I can write and have fun with words even, and there are days when every sentence is born in pain. Today is one of those days.

We are down one more old tree in Queen's Park. Another tree was cut down near the war memorial.

Stay sane.

Last night Sebastian woken up in the middle of the night, and came to find me. I lay down beside him. He was whining a bit. I could hear his stomach grumbling. He must have been woken up by his belly hurting. He had diarrhea last night. I can only suspect what the reason was, but I do not know for sure.

Yesterday he was stiming all day very intensely, and he had one of his mysterious allergy attacks. I was burning twigs in the yard in a little barbecue. He was watching it and tuning around to warm himself from all sides. Maybe it was the smoke that caused the attack.

After I put away the down duvet and washed all the sheets he fell asleep peacefully, and considerably early.

I think he acts up initially because of his discomfort, and yet after few of those episodes, he begins to act up from other reasons.

People in crisis do not think about the future, but live day to day. I have lived like that for years now--except on the days when I live hour by hour. Very often, a few times a day, I live minute to minute. My immediate goals become surviving another tantrum, keeping Sebastian safe, keeping everybody else around him safe, finding a solution, finding the way, staying calm, patient and staying sane.

Sunday, November 8, 2009

One step forward...

Yesterday we went to speech therapy around noon. The therapist said that Sebastian had the best session so far. His eye contact has been improving lately, and he is more attentive to his environment.

That night I went to work. Everything was fine when I called around seven, but when I finally came home around 3 am my babysitter said that at ten o'clock Sebastian had had the worst tantrum ever, was crying and grabbing her hair.

Sebastian's stool has undigested food on it again and it looks only a little better than before GAPS diet.

Why does it always seem to be the case with me: whenever we seem to be making a step forward, it's followed by a step or two back?

Saturday, November 7, 2009

Nightmare

I struggle even in my sleep. Last night I in my dream I was climbing three steep hills with observation towers on top of each one, and I fell off last wobbly and flimsy tower. After that I was stuck in very small and claustrophobic shelter with my father and my brother, and I wanted to get out really badly.

When I sleep and in my waking hours and I am not doing well enough. I would like to change that. I need a little rest.

Thursday, November 5, 2009

School transition meeting.

I had this morning Sebastian's transition school meeting. In spite of the fact that transition coordinator from Chedoke did not show up, the meeting went very well. School staff from principal and coordinators, to teaching assistant and lunch lady are doing everything they can to accommodate Sebastian. And it is not an easy task. They are getting to know him to be able to predict and deal with his violent outbursts with scratching and biting and hair grabbing. He has entire classroom where he has his table, pecks, puzzles, a lot of great new toys, books, and a even a little TV. Sebastian's teaching assistant has an experience with working with autistic children, and they already have a connection. Sebastian is definitely happy there. School is doing everything they can, it is encouraging and I am very thankful for it.

My concern is how Sebastian will do in less structured environment for a longer run, and if he will be able to learn as much as he can with IBI, and how it will affect his future.

Royal visit

Before arrival.


Here they go.


Wind and rain started soon after royals came.


Fly over.


I came too late to be allowed inside.


But I saw departure from up close, and that was when my camera died.


Haida is just a walk away from my home, and thanks to the fact that I was wearing my overhead sign I have met one more parent of autistic child from my neighborhood.

Wednesday, November 4, 2009

Biting a stranger.

We came to this building first time couple of weeks ago. It is old solid factory building converted to offices. We climbed to the fourth floor since Sebastian s afraid of elevators. On the fourth floor the door from the staircase lead to long, bright carpeted L shaped corridor that runs through entire length and width of the building Sebastian was happy to run back and forth, and I felt since it was an enclosed space he was safe there. 'When we the time of our appointment came I was filling up the form Sebastian run outside of the office to the corridor again. I went out to get him, and saw that he took his pants off. It could indicate one only thing. When I get to him with the key to the toilet, he was more than half way done. Embarrassing. But we live in a zone where embarrassment must be ignored in order for our life to go on.

Today we were there again. I got the key to the bathroom right away, Sebastian used the toilet and things went smoothly before the appointment. Session was very stressful for Sebastian since it required him keeping still, and that id hard for him to do. When I was making another appointment Sebastian run out to the corridor. Since corridor was enclosed I thought he would be safe there for the minute I needed to finish. I was wrong. Very soon we were alarmed that Sebastian entered through the open door to another office, and bit somebody. Sebastian does not attack strangers, and tries to avoid contact with people if he can, but there were two occasions when he pulled a stranger hair. An yet this time I somehow new that something bad has happened. I was shocked, and all what I wanted to do is go home as quickly as we could. As a result I dad not apologize to satisfaction of the lady who was injured, and I had an email from her waiting for me at home that demanded satisfactory apology to be made and as made me relive and entire experience. I apologize.

The lady he did it to is an adult, but if Sebastian encountered a child the consequences could be much more traumatic. Sebastian is just six years old today, but if his behaviour will not improve dramatically it will soon be impossible for us two to go out together.

Will I ever hear an apology from people responsible for taking Sebastian's therapy away from him? I wander.

At Queen's Park - day 69



There is a lot of work going on.




I was happy to see Edward today with his new and improved sign.

Tuesday, November 3, 2009

At Queen's Park - day 68

Today, the Truck Training Schools Association of Ontario was, together with truck drivers that need to be tested, protesting the suspension of truck driving road tests. Testing was stopped because the government employed road testers are on strike.











Good luck truckers!

Sunday, November 1, 2009

Macaroni and cheese envy

We did not go to the farmer's market on Saturday. Last Saturday I bought apples and grapes. Sebastian craved and ate a lot of them, but they were coming out of him undigested. I did not want to wrestle with him, taking away from his hands apples he had already helped himself to and even bitten into. I took the easier way out and stayed home, since we had plenty of vegetables. But I did run out of onions, and we went to get some at our supermarket.

My shopping is easy now. I only visit the fruit and vegetables section followed by eggs and butter. All bagged, boxed and sealed-in-colorful-packaging goods are not for us. But when I was passing through the rest of the store I noticed the stack of boxes of macaroni and cheese, two for 99¢, and I thought: I do envy parents of healthy children that can feed their kids whatever they want. Wouldn't it be easy and just wonderful to get few boxes of that and cook it and serve, and just not worry about gluten allergies, "leaky guy syndrome", undigested food in stool, GAPS diet, or anything else?

Saturday, October 31, 2009

Pumpkin Pie

I decided to relax and celebrate Halloween by making a GAPS diet friendly crust-less pumpkin pie.

I like pumpkins' bright orange colour and round shape. For a long time after coming to Canada I was not sure if they were just Halloween decorations or if they were also food.



First, I cut it in half, took all the seeds out, and put it in the oven. Some people prefer to boil or steam the pumpkin.



After the pumpkin is baked it is really easy to take the skin off.



Add:
- 5 eggs (or more)
- about half cup honey
- about a teaspoon of sea salt
- cinnamon
- nutmeg, (you can also add cloves)
- ghee or/and coconut oil
- vanilla extract
- I also added juice from one lemon

Preheat oven to 300F. Mix, blend till smooth.




Pour in a glass pie dish (oiled with ghee). Put in oven for about an hour.



It is really yummy!

Friday, October 30, 2009

Autism's Media Shadow


The CBC has posted the segment they did about me to their site, but without the commentary by Linda Beedham, suggesting that our criticism of their deflecting the issue from a political problem about government neglect to a personal one about community is accurate. The segment itself portrays the daily struggles I face as a single mother of an autistic child, but even here, no direct mention is made of the political struggle that takes up so much of my already hectic daily life. If I appear tired, haggard and perhaps somewhat depressed, it is in no small part because my efforts to directly engage in raising awareness about autism have shown me the extent to which our government, social systems and media actively work to prohibit and silence any type of effective critique on the part of the people who these sectors ostensibly exist to serve.

What has given me the strength and courage to go on are the people I have come in contact with in the course of protesting--the parents, friends and children whose lives have been affected by autism, and whose stories and faces register the same marks of systemic exclusion and neglect, the story of which continues to be ignored by the media, and hence, by larger society.

I only hope that CBC, and other Canadian media outlets, can prove me wrong on this, and provide coverage that represents the real political and social dimensions of the challenges autistic kids and their parents face. This is the authentic way to foster a sense of community and solidarity, and to give some relief to a segment of the population that is isolated and desperate, not just because of the daily struggles they face in caring for their sick children, but because the economic and governmental dimensions of the problem remain cast in a media shadow.

Thursday, October 29, 2009

Connecting with Parents at Queen's Park

Yesterday was one of the biggest disappointments I have ever had, but today is another day. Sebastian was at school, and he had a pretty good day - no meltdowns so far. I went to my dentist appointment. I cut my hair short yesterday, since Sebastian started to have more of his tantrums. When this happens, he gets in to my hair--literally!

But this morning when I woke up, I thought that thanks to yesterday's TV show I have lost my innocence. I believed that Canada is a "good country". Canada is still a good country, unless you happen to be vulnerable and/or "underprivileged" (isn't this the same thing?). I believed that if I told the truth, explained what is the best thing to do, I'd be heard.

In the commentary to yesterday's documentary it was implied that I am looking for more money from the government for my boy. That is not quite accurate. School boards receive over $60 000/year for each severely handicapped child in their system. This money is not assigned to the child per se, and can be usefully spent on improving accessibility by building wheel chair ramps and other infrastructure. Or it can be spent on creating yet another commission, or writing a few more reports about how wonderfully handicapped kids do in our schools. If that money were directly assigned to Sebastian it would be enough to buy him 10 months of therapy from a private provider. So,to summarize: the money is spent, Sebastian does not get therapy, and in consequence his functioning will not improve, and might very well deteriorate. Furthermore, no one is accountable for how this money is or isn't spent on Sebastian, and whether he will actually benefit from it or not.

I explained this to CBC, but these details were not included in the clip. When they were filming at Queen's Park we were approached by one of the workers who was installing new cables there. His name is William and he is the father of two autistic children. His older son was waiting so long for therapy that he became "too old" to receive it. William's younger daughter is still waiting for an official diagnosis to get on the waiting list. So both of his children never received and are not receiving services. Because of this paper shuffling by the Ministry of Children and Social Services, neither of William's children are on the waiting list for therapy. CBC interviewed William but did not include him in the program. Instead, they invited a person who explained that my problem is not lack of services, but a failure to connect with community.

Maybe they are right. CONNECTING is the way to go.

Mark Kelley email

I received Email from Mark Kelley today:
I was just forwarded your blog, and read your comments about our coverage of your story. Connie's treatment was to reveal the isolation you feel because you have no support from the government, including the fact what little support you get will soon be lost. Our second guest Linda Needham said specifically how she had to wait 4 years for help for her son 20 years ago, how the waiting list is even longer now, and how expensive that help can be...if you are lucky enough to get it. Her point was that people who may feel isolation should find some other support to help them through the waiting period. She offers that support- as a volunteer for the past 15 years.

Blaming us for failing to mention your petition is fair. Blaming is for communist-style propaganda?

I am happy to include, on our website, the fact you have a petition, and we can endeavor to put a link to it. I'm not sure why you have come to the conclusion we were out to misrepresent your struggle. It's a touching story that received an overwhelming response from our viewers. Our aim was to bring the struggle of parents with autism to light, rather than leaving it in the shadows of political neglect.

Sincerely,

Mark Kelley

Wednesday, October 28, 2009

Media Manipulation



The CBC did a wonderful job editing my story that aired on television tonight, making me appear a victim of social isolation rather than a victim of the systematic failure and discrimination of our political system. The story itself did accurately depict the daily struggles I face as a single mother of an autistic child, but I am astounded at the ideological and propagandistic response provided by Linda Beedham after the segment. Mrs. Beedham suggests that the main thing needed is for me to reach out to other parents of autistic children for support...that there are options!




Little mention was made of the fact that I have been protesting outside of Queens Park for the last 66 days. Beedham's response suggests that the main problem I face is lack of community, whereas the battle being fought here is over the lack of government and social services. Perhaps when I said "I don't know where to turn, who to talk to, what to do" I should have added that this is because I feel that I have already exhausted the options available to me.

The CBC show, despite all good intentions, had the strategic effect of shifting the problem of the lack of treatment of autism from the public realm of politics and the abuse of power, to the private realm of parent support communities. The message, in so many words, is: "It's sad that the government can't provide funds and infrastructure to ensure that autistic kids receive adequate therapy and educational programs, but you should seek the solace of the parents of other autistic kids who have been likewise abused by our health care system and government".

Omitted from the documentary: any mention of my blog, any mention of the petition, it gave only a vague mention of my protest.

They made me look like a helpless victim who doesn't know how to "reach out". They used my story as a "window" into the lives of "the people behind the news" offering my life as a way of understanding the tragic events in Edmonton and Mississauga that have occurred this month. But rather than delving into the political and social issues that create a situation where parents, from sheer desperation, kill their own kids, they "emotionalize" the issue, turning it into a story about the need for community.


It's truly astounding. Even in communist Poland, where I grew up, they didn't have such sophisticated channels of propaganda. The CBC story has served to deepen the problem of autism treatment in Canada. Rather than taking this month's tragic events as a warning and opportunity to raise public awareness about the actual administrative issues at stake (about spending taxpayers' dollars on effective treatment rather than expensive "babysitting" programs), the framing of the CBC story has successfully provided the illusion that we live in a caring society, thereby ensuring that parents continue to languish and grow ever more desperate, waiting for help that never comes, waiting for therapy that is systematically withheld.

If they really wanted people to "reach out" to me, why did they make no mention of my blog or the petition? This seems like a case of "one step forward, three steps back".

At Queen's Park - day 66

Today at Queen's Park people protested against the HST tax. My camera died and I had to use my cell phone to make pictures, but most of the photos didn't get saved. This is because now I need glasses for everything, and never carry them with me, and I couldn't see the details on the phone. These are all the pictures that survived.



CBC Connect with Mark Kelley

On Monday CBC tv came to film us. There is going to be a 5 minutes segment on "Connect with Mark Kelley" They shot over three hours of film for this short segment. They only called half an hour before they arrived, and I didn't even have time to wash my hair. I received a call yesterday to tell that they will show it today at seven PM on the CBC news channel. While they were here Sebastian was crying alot. I was upset as I get when it happens. I wonder what footage they will use. I really do not know what will come out of it, and I have no control over it now. Just like in my real life.

Tuesday, October 27, 2009

Number of Children Awaiting Autism Treatment Balloons

A media release from NDP Leader, Andrea Horwath. Thank you Andrea for continuing to fight on behalf of our children:


Number of Children Awaiting Autism Treatment Balloons

location: Queen's Park
date: October 26, 2009 - 1:00pm
body:
Ontario’s NDP Leader Andrea Horwath is citing more troubling facts concerning the McGuinty government’s approach to treating Ontario children with autism.

“The government is cutting off more children from IBI when schools are not able to provide the therapy. Instead of funding treatment, the government is allowing waiting lists to balloon and children to languish,” Horwath said in the Ontario Legislature today after revealing the government’s latest quarterly numbers for April to June, 2009.

Compared to the previous quarter, 1,649 children are now waiting for IBI therapy. That’s 136 more than previously reported (1, 513) and a 9 per cent increase in just three months.

“When will parents see adequate service levels and proper funding for children’s autism treatment?” Horwath demanded of Minister of Children and Youth Services Laurel Broten. “It has been six years. These children and these families cannot wait any longer for this government to get its act together when it comes to the autism file.”

The government is cutting off more children from IBI even though schools are not able to provide the therapy, Horwath said. The latest quarterly statistics from the ministry show another 114 children were abruptly cut off.

“The regular quarterly numbers don’t lie. Why are more children with autism waiting for treatment, and why are more children having their autism suddenly cut off and terminated?” Horwath said. “The McGuinty government’s autism program is not living up to the Premier’s promise of ensuring children with autism receive treatment regardless of their age.”

Horwath, the MPP for Hamilton Centre, recently brought the autism file into her portfolio as Ontario’s NDP Critic for Children and Youth Service.


-----------------------------------------------------------------------------------


From House Hansard 10/26/09. The new Minister of Children and Youth Services has spoken:

AUTISM TREATMENT




Ms. Andrea Horwath: My question is to the Minister of Children and Youth Services. According to her ministry's most recent quarterly numbers, the McGuinty government's autism program is not living up to the Premier's promise of ensuring that children with autism receive treatment regardless of their age. The IBI/ABA numbers for April through June 2009 continue to be troubling. Compared to the previous quarter, 1,649 children are waiting for IBI, 136 more than previously reported, and another 114 children have been abruptly cut off.
Why are more children with autism waiting for treatment, and why are more children having their treatment suddenly cut off and terminated?

1100


Hon. Laurel C. Broten: This is a file where I'm very pleased to be able to build on the work that's been done by our government and a variety of Ministers of Children and Youth Services since we took office in 2003. We've made a lot of progress. Kids are getting the help they need, we've expanded those services, and we're working to make sure that families also have the support they need. We're working to maintain that progress and push ahead, working with parents and experts. Over the last couple of years, we've been examining how we can do better for our kids in Ontario.
I had the opportunity last week to visit Surrey Place and speak directly with the experts and find out how they think we can best help kids in Ontario. There is more work to do-there is always more work to do. We continue to build on the efforts that we've put in place to make sure that Ontario kids get everything they need from our education system and that envelope of services around them.


The Speaker (Hon. Steve Peters): Supplementary?

Ms. Andrea Horwath: It's been six years. These children and these families cannot wait any longer for this government to get its act together when it comes to the autism file.
The regular quarterly numbers don't lie. The government is cutting off more children from IBI when schools are not able to provide the therapy. Instead of funding treatment, the government is allowing waiting lists to balloon and children to languish. When will parents see adequate service levels and proper funding for children's autism treatment?


Hon. Laurel C. Broten: I want to put some key facts on the table. We removed the previous government's age 6 cut-off and more than tripled autism spending, from $44 million to $165 million. We've more than doubled the number of kids getting IBI treatment-more than 1,300 now, up from just over 500 four years ago. We've introduced respite programs that serve almost 7,000 kids. The growing waiting list is not acceptable. That's why we've put more resources into the system.
But I would say that the numbers being brought forward by the leader of the opposition are consistent with numbers that we've seen in the past: 114 kids have completed* the services for IBI, and we now have 1,262 kids receiving that service.

We need to get service to more kids. We need to broaden that continuum of support. That's why we're working with world-renowned experts like Peter Szatmari and Nancy Freeman and why we've brought that group of expertise to the table to make sure that kids in our schools get the treatment-


The Speaker (Hon. Steve Peters): Thank you. New question.


*Sebastian was one of those kids that "completed" the services. There is nothing more I can do but "congratulate" our government for "completing" its difficult job.

Monday, October 26, 2009

At Queen's Park - day 65

Today was very noisy because of vacuum digging in front of the Whitney statue.



The family of Brian Coldin, from Muskoka, was there: all three generations. The grandmother was holding the signs up from behind (she is not in the picture). She is a very lovely lady. Maybe we will hear about Brian's story in the news one day. They have quite a tale to tell.

Some CBC people from the new show CONNECT with Mark Kelley came to my house to film, earlier than originally planned. They collided with another documentary maker that I had arranged an appointment with earlier. I was hoping that both shootings could be done, since there is not much to film really--a middle aged woman with a homemade sign over her head is not that interesting--but it did not work out. I hope we will be able to do the other documentary another day.

The CBC people, Connie and Leonardo, followed me home. They said that the 5 minutes clip will broadcast on Tuesday, or Wednesday. Sebastian had a couple of meltdowns when they were at home and in the car. It was not pretty. He had a couple of tantrums after they left as well. I am very tired.

I am also bit nervous about how it will all came out.