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.