Sunday, March 29, 2009

Clinical Continuation Criteria

The Clinical Continuation Criteria is a document produced by "experts" employed by the government-funded Autism Intervention Program; a program that discretely changed its name from the Early Autism Intervention Program (since there is nothing "early" about a three years waiting list). I think this new document should have its title changed also, maybe to: Creative Ideas for how to Effectively Increase Mental Retardation Occurrence and Severity in the General Population of Ontario.

Saturday, March 28, 2009

Yard work

I cannot do anything without guilt. Not even yard work and pruning roses. Not washing dishes, not cooking wieners five times a week. I cannot watch young children walk on the sidewalk in front of my house without comparing them with my boy. will I ever get over it?

There are always four other things I should be doing. And so often I just do nothing. But my mind is racing. I do not know what to do first. I just look busy (to myself).

So I pruned the roses. And I talked to my neighbors a little. When I came back home, Sebastian had treated himself to jug of goat's milk. He had managed to bring it from the fridge to our bed -- the whole 1.7 liters of milk! I had to wash all the sheets and quilt and down comforter and covers, and the floor. How much of it he drank I do not know. He likes his milk!

And why is my mood darker today in spite of the fabulous crocuses in my yard I just noticed today? Sebastian will be six in seven days. And me, when I read articles like this one if I were on Prozac, I would probably need to double my dose.

Friday, March 27, 2009

Blowing bubbles.

Today Sebastian was blowing bubbles first time in his life.
When he was two nobody could get him even to look at them. Lately he was looking at them but did not want to blow.
He did it today.
Yesterday socks, today bubbles.
Let us celebrate.

Thursday, March 26, 2009

Putting on socks

And do you believe it?
Sebastian put socks on today for the first time all the way!
I am one proud mama.

Wednesday, March 25, 2009

Visiting

Yesterday we came home later than we usually do. We should be doing it more often. Sebastian needs it very much. We were at my friend's and Sebastian's godmother's place, and although he has visited there many times before, he acted fearful. He was not throwing tantrums, but he tensed up and was raising his hands up in his nervous defensive gesture quite a few times. He got comfortable after a while but was staring at the oil portrait hanging on the wall with considerable apprehension. He never seemed to pay attention to the painting before.

The problem with going to other people's houses and new places is Sebastian's considerable destructive power. He chews on everything he can reach. If he does not chew on things, he knocks them down, crawls under carpets, topples TV sets. So when I am not in my physical or mental top shape to predict, asses and, if required, prevent what he will do next, our escapades simply create dangerous situations for Sebastian and any surroundings we happen to venture into. On the other hand, he desperately needs a lot of exposure. I think it is detrimental to his future ability to cope with new places and situations to deny him this.

Monday, March 23, 2009

1 in 60 children?

I just got this article today. It is about a study done among British school children.
Looks like I will have to change my car window sticker soon.

Sunday, March 22, 2009

Lady Sasquatches

Yesterday, for no particular reason, I felt like somebody pulled out the pin I was held together by. I could not apply myself to even the simplest task, so when my friend called with an idea of going to the art gallery to see amazing lady sasquatches I ran with it. Sebastian definitely needed to get out too. The sasquatches were fantastic. There were six or seven of them, and there were big and furry, and sexy and scary, well lit and politically charged carrying a feminist message with wild ancient fury. We were not allowed to take pictures of them, but we could take the picture of the vase made out of wire coat hangers in the stiarwell, and that was also very impressive.

We also took pictures of the sculpture outside - note how Sebastian's expression looks a lot like the bronze face. When we where coming out of the gallery Sebastian ran into glass door at his full running speed. He bounced off it and fell on the floor like a stunt man in the movies. He only whimpered once. We all watched as the big bump grew on his forehead. The pictures were taken just a few minutes after the accident.

Saturday, March 21, 2009

No words - just hugs

Sebastian does not have words. He can not communicate his emotions that way. And yet I can see a big change lately in him. He runs to me for comfort when he is upset; he climbs on my lap and gives hugs and presses his face against mine; he wants me to be in his room with him. In the morning, after we arrive to school, when I unlock his seat straps, he climbs up to my lap with a big smile on his face and gives big hugs. That was not happening a year ago.
Here are the few snapshots I took last week.

Friday, March 20, 2009

Autism Crisis in Ontatio

These are some reasons why the situation of autistic children in Ontario is dire:

  • The number of kids diagnosed with autism is growing. Now one on 150 kids are diagnosed.

  • According to unofficial sources, about 2 000 children are on the waiting list and they are expected to wait three years or longer, missing the window of opportunity for the most effective period of treatment.

  • Children who are given treatment receive, on average, 50% or less scientifically recommended hours.

  • Kids are discharged after just months of treatment, before they are capable or ready to learn from their environment.

  • The cost of treatment in government run institutions is 3-5 times as expensive as the same service provided by private providers.

  • Schools are not prepared to handle autistic education. For each autistic child they enroll, schools are receiving an amount of money that would pay for privately supplied IBI. However schools only provide babysitting service by an EA (Educational Assistant). These workers generally have very little or no knowledge about autism, and are not trained in IBI therapy.

  • Parents are forced to give up custody of their children if they want them placed in the long term care institutions.


These are not enough reasons for government to start acting.
WHY?

Thursday, March 19, 2009

Toronto Sun Article

Autism battle on backburner.
Here is the article in Toronto Sun that comments on ombudsman response from my previous post.

Ombudsman

An ombudsman (English plural: conventionally ombudsmen) is a person who acts as a trusted intermediary between an organization and some external constituency while representing the broad scope of constituent interests.

Usually appointed by the organization, but sometimes elected by the constituency, the ombudsman may, for example, investigate constituent complaints relating to the organization and, where possible, resolve them, usually by making recommendations (which may or may not be binding), but sometimes through mediation. Less frequently, the ombudsman pro-actively identifies organizational roadblocks which run counter to constituent interests.

In some jurisdictions the Ombudsman charged with the handling of concerns about national government is more formally referred to as the 'Parliamentary Commissioner'

Long time autism advocate Taline Sagharian filed the complaint to ombudsman about autism crisis in Ontario.
Here is his answer (881K pdf format). Get ready.

Wednesday, March 18, 2009

One more comment on Continuationa Criteria.

Research shows there is no evidence that a child would improve in years two, three or beyond, if there is little pr no improvement in year one of IBI treatment.
"No evidence" sentence was used by tobacco companies 30 years ago also. May be scientists and "experts" employed by government to create such creative documents as Continuation Criteria could study case of Carly and Nicolas and Simon featured here last year on W-FIVE. And may be then they could draw the conclusions of dependence between availability of treatment and level of functioning. According to our government funded "expertise" Carly, and Nicolas should have their treatment discontinued after six months. They just happen to have parents that did not agree with that and had resources and will to help their kids. Simon was not so lucky. His very carrying parents could not afford the therapy.

Tuesday, March 17, 2009

Clinical Continuation Criteria

Intensive Behavioural Intervention is a time-limited evidence-based early intervention designed to accelerate a child's learning or change his or her developmental trajectory. If goals are met, a child will be ready for transition into community-based programs and school.
(....)
After six months of programming, children are to be making meaningful progress in 75% - 80% of the markers to continue in the IBI stream. If not able to, the focus of programming may be on the development of functional skills and eventual discharge from program.


These are some quotes from a document created by the Ontario government to make terminations from ABA therapies easier to effect.
You can read the whole document here. (77K, pdf) This is a very upsetting move on the part of the government, but is in keeping with the general governmental position of justifying doing as little as possible.

The document does not mention what kind of accommodations and restrains will be needed for thousands of low functioning, non verbal, self-injurious, feces smearing, violent teenagers, who were waiting for therapy for three years and dropped from the program because they did not meet 75%-80% improvement in 6 months measuring stick. Now cared for by their likely already exhausted parents, they will be in the hands of the Ministry of Children and Youth Services in just a few years. Perhaps it will be easier for the government to ignore them once they are permanently categorized as "severely mentally challenged" and safely tucked away from view in special homes and facilities. With the lack of developed communication skills, they will make little fuss when funding is cut to long term care facilities as well. The last thing the government, or society, seems to want is a population of retarded kids who can actually speak for themselves to describe how a lack of political will and vision deprived them of the services and education that could have allowed them to function in "normal" society. The loss will be both their and ours.

As Canadian as...

I listen to CBC radio in the morning. They do not have commercials, and I have gotten used to their voices. I want to share one bit I picked up today. Peter Gzowski on his show had a contest once for a sentence equal to "As American as apple pie" for Canada. The sentence that won was "As Canadian as possible, under the circumstances..."
It made me smile, but I think there is something very truthful in that sentence.

Sunday, March 15, 2009

Too lazy or too tired?

My mother who less than 10 years ago went through very aggressive chemotherapy for cancer that has spread though her body and bones and lymph nodes and was too advanced to be operated. The chemotherapy worked very well and killed her cancer, but left her body ravished and depleted. My mother has been physically active all her life, and she was always pushing herself beyond her limits. And she still does that. But now her body sometimes simply refuses to cooperate, and she has to stop in the middle of whatever she is doing and have a nap that sometimes lasts for hours. When we were visiting her last summer, she would sometimes say: "I do not know if I am too lazy or too weak and tired to do this?"
On the picture my mom and her goats.

My problem is my fuzzy brain, short term memory, planning ahead, prioritizing and concentrating in general. I can do some things, but I will ignore and forget about others, everything takes way too long, and I become overwhelmed very easily. Without focus little gets accomplished. I am used to just coping. I think I feel that way because of years of stress, and maybe some pre-menopausal hormonal changes, and maybe I am still recovering from the mysterious virus that attacked me last summer, and also maybe I have food sensitivities that can effect the way my brain feels. Or may be I am just a lazy messy winy slob looking for excuses. I do not know. But I am not willing to accept this as "normal".

Saturday, March 14, 2009

Friday activity report.


On Friday sebastian was working with a therapist for the first time after she had just come back from maternity leave.
The therapists working in Sebastian's school are our most favorite people in the world, but Helen is the "favouritest" one. I was very happy to see her back. This is the report we got on Friday.

Friday, March 13, 2009

World Builder video

My friend who spends most of his time on this planet scowering the internet for interesting bits and pieces showed me this video the other day and I think it is absolutely worth looking at. I recommend watching in full screen mode (four arrow button in lower right corner, left of "Vimeo" logo)

World Builder from Bruce Branit on Vimeo.

Thursday, March 12, 2009

Day activity report

Yesterday Sebastian fell asleep at 6 pm. I decided to join him because I thought he might sleep through the night, although I was fully aware that it was more likely he would wake up in the middle of the night and roam till the wee hours of dawn. And that is what happened. He woke up before midnight and fell asleep at 6 am . I was up with him all the time and caught up on my work, made his lunch and did a load of laundry. Around 6:30 I put him in the car, and he slept soundly all the way to school. I let him sleep for another half an hour after we arrived. I then woke him up, and carried a cranky boy to school swearing to myself that I will never let it happen again. It happened before, and Sebastian proved to have astonishing ability to sleep 4-5 hours one night, have a long day at school and have trouble to fall asleep next night. He often puts me to sleep - I seem to need sleep more than a 5 years old.

Today was a postponed date of a rally for Delanie. I checked the internet with Tanny and although we did not get any messages confirming it recently, I decided to go. I parked my car in our regular spot, and decided to have a nap before I go. I was not very comfortable in my seat, and I did not think there was a need set an alarm clock. I waken up around 1pm. It as too late to drive downtown.

I felt like a looser. I delivered tired Sebastian to school in the morning, did not do any work or meet and support people I should. Full of guilt i went to pick Sebastian up thinking I will hear about how he hurt himself or somebody since he was tired and cranky. I opened his activity report anxiously. Here is what I found. It iis not very clear picture, but reading it made my day.

Click on the image to enlarge.

Wednesday, March 11, 2009

Busy day

Today is one of those days when I wish there were two of me, and twice as focused as I am so may be we could do half of what needs to be done.
I am not even trying to be funny here.

Tuesday, March 10, 2009

Putting on socks and hats

Sebastian can dress himself. Well, may be not quite. He can put shirt and pants on and off. He has his own and very unique technique to put his shirt on. I will tape it soon. He cooperates by helping to push his arms through jacket sleeves. Recently he mastered putting hat on. "It only took a month!" - his therapists were quite exited. Now he is learning to put his socks on. In my eyes when he will master it it will be quite an achievement.

Sebastian very rarely puts clothing on. But he is quick to to undress himself and roam in his birthday suit even when it is quite cold. He was running naked in our backyard all summer, but this year he is too old for that. I think I will have to paint his clothes on him.

Monday, March 9, 2009

Daylight Saving Time

In Canada they changed the time to daylight saving time yesterday. I think it is time to ditch the time change. If they want save energy so much why don't they keep summer saving time all year?
On the second thought;
I actually like the time change before the winter. It is easier to adjust. We like sleeping in.

Saturday, March 7, 2009

Cold and flu.

Last year we were sick all the time. Cold after flu again and again and we were hit hard. Sebastian was loosing weeks of school. This year we colds attack us with fury, but do not last long, and do not knocks us out.
On Friday Sebastian had running nose a bit of cough. I had running, itchy nose and eyes, but I felt fine. It was the same on Saturday. I wander if today it will go away or take us down. We will see.

Thursday, March 5, 2009

Answer to appeal.



I received a letter with answer to my appeal to terminate Sebastian's therapy.

Click on the image to enlarge

New blogger

Yesterday my dearest friend and companion in autism journey, Tanny joined the Blogger community. Her blog is called Autistic Warior.
Our stories complement each other. According to government payed experts my son is too autistic to have his therapy continued. Tanny's son was not autistic enough even to get on waiting list for treatment in spite of being developmentally in one percentile of population in age four. It seems that government is using a lot of effort to keep kids off the live changing therapy. Not autistic enough, too autistic, whatever works. That is our direct experience.

Wednesday, March 4, 2009

Ontario autism news on TV!

Delanie is a lot like Sebastian. Here is the clip on Youtube from yesterdays news.

Our minister of social services is such a darling! She sounded exactly like doctor Reitzel the discharge papers signer. Dr Szatmari is similarly eloquent. They use the same tone of voice, and same fazes.

Car window sign

I had that idea long time ago, since I am at least couple of hours on the road every day. I even has given a file to my friend who said that he can print it for me last summer. He procrastinates like I do. Couple of days ago I decided it is time and I found a sign store, asked for a price, and it was very reasonable, and it would not take a lot of time, so I decided to go ahead. Owner of the sign shop after hearing my story charged me less than cost of material. Thank You!

And now, when I am stuck in traffic, I also raise autism awareness among general public. And I do not mind people tailgating me that much.

Tuesday, March 3, 2009

Single socks

I counted today Sebastian's single socks.
There were 23 of them.
No comments.

Why don't they sell packs of identical socks for kids?
I would have then 11 pairs, and one single sock.

Autism news on CHCH TV!

I am happy to announce I was wrong yesterday! There are news about autism today on CHCH TV channel 11 Hamilton at 5:30pm eastern standard time. Paul Ceretti father of Delanie a girl who was discharged from therapy exactly the same way Sebastian was, was doing an interview on the Mark and Donna show. Minister Deb Matthews was responding at that time. It will also be re-airing at 11:pm.
Bravo Paul!

Monday, March 2, 2009

No rally

Rally was delayed to march 12. So there will be no autism news.
One more silent day.

Local news.

This morning I was listening to the radio, like I always do, on our way ti school. Since I can not stand radio commercials I tune in to CBC. The stories in local news today were:
Ticketmaster trial, user fees for kids hockey, trucker protest over speed limiters, missing woman, teenagers brawl that killed two, man charged in TTC bus shooting, arrests made in Toronto philanthropist's slaying.

I am wandering if autism will make it to the news tomorrow, and how much time will be given to it. Tomorrow there is going to take place the Press Conference an a rally at Queens Park about Delanie - a little girl that was cut off from therapy exactly same way Sebastian was. I am going to go. I will report about what I saw.

Sunday, March 1, 2009

Scary Mask

My friend said to me the other day that life wears a scary mask.
Some days it is hard to remember that it is only a mask.
Today was one of those days.