Tuesday, June 30, 2009

Andrea Horwath press release

NDP leader, Andrea Horwath has prepared the following press release.

‘Alarming’ jump in autism cases waiting: Horwath
 
QUEEN’S PARK – Ontario’s NDP Leader Andrea Horwath says the number of children waiting for autism treatment is growing at an alarming rate. 
 
The Hamilton Centre MPP is calling for a real government strategy to support children with autism and other special needs.
 
“This is an area we know is suffering greatly from lack of government resources,” Horwath said.  “It’s time that this government became a champion of children, not a champion of waiting lists.”
 
Horwath just obtained the most recent numbers for children waiting for Intensive Behavioral Intervention (IBI) treatment and those waiting to be assessed.
 
As of March 31, 2009, there were 1,513 children waiting for treatment, up 450 from the previous quarter ending in December, 2008, when the wait list numbered 1063.  An additional 389 children were waiting for assessments in the first quarter of 2009 compared to 381 in the previous quarter.  In the year-end quarter, 102 children had their IBI services terminated.
 
“This is a children’s rights issue,” Horwath said.  “Every child in Ontario has the right to an education and should receive the supports required to meet their educational ability.  Parents are paying exorbitant amounts out of their pockets to obtain services in the absence of a good government program.”
 
Along with investment, Horwath called for regular, timely public reporting of IBI wait list numbers, which are often released many months after the fact and only on request or through freedom of information (FOI).
 
The NDP Leader criticized Premier Dalton McGuinty for failing to meet his promise of IBI for all Ontario children with autism regardless of age.  Through an FOI request, Horwath learned that a pilot program to bring IBI into schools still does not exist, in spite of the McGuinty government’s claim to the contrary.
 
Horwath believes some children are being cut off IBI even though they still need it.
 
“Both the Ombudsman and the Child Advocate have said there should be more services for children with special needs, but the McGuinty government is cutting services instead,” Horwath said.


So we had autism on the news again for a short while. That is a good thing.
 

Monday, June 29, 2009

Sauerkraut making

On Sunday I have done some sauerkraut the way my mom taught me. I will read all fancy GAPS fermenting recipes later. For now I do what I know.

I shredded four small cabbages, bunch of carrots, and few onions. One of my onions was red and that is why you can see a bit of purple on the top of shredded vegetables. Then put it on layers into ceramic pot*, put some salt, and pound it with the wooden utensil that looks like a ball on the stick (what is it called in English I do not know) till the juice shows up. It might take a minute or two.



Then put another layer, salt it and pound again, repeat till the pot it almost full but not too full, and juice visible when you press the cabbage like on the picture. Do not stress a lot about putting too much salt. Taste it, and even when it seems to be a bit too salty know, that the some salt will be absorbed by vegetables during fermentation. Also if you will not have enough salt vegetables will spoil easier.



In the old country they were using stone to create weight, but I used plate and jar filled with water. That is to minimize air exposure to the vegetables, and prevent them from spoiling. Now the bacteria has to do its work and that depends from room temperature.

My mom liked to add some bailey leafs, and allspice, I like to put some garlic and ginger.

My mom would make sauerkraut once a year in the autumn when cabbage is plentiful and cheapest. She would fill big wooden barrel. My mom would wait a few days, helping release gases created during fermentation by poking the cabbage with a long stick, and then when cabbage was almost ready, she would pack it into glass jars. Vegetables in the jars would still ferment for a while and jars would sip some gas and juice from under tight lids making noises, and then they would naturally become airtight, and were transported too cooler cellar where could survive till next summer.

My operation is scaled down, and I have done it just a few times since last year when I found out that sauerkraut I buy in stores is pasteurized. I had such severe sauerkraut cravings this spring that I could eat 1 liter jar of tightly packed sauerkraut at one sitting and not even burp or have any gas afterwards.
My body is much smarter than I am. But I would not think about giving it to Sebastian as I thought it was too difficult to digest for him. Now I know better.


*ceramic pot is the best, and I happened to find one in my basement left there by previous owners, but any big container will do. If it is a glass jar try to put it in the dark since bacteria does not like light too much

Saturday, June 27, 2009

Frying GAPS pancakes

It is two weeks for Sebastian without milk and starches and sticking as well as we can to GAPS diet. I feel a bit overwhelmed and I worry constantly (like I did this morning) that I do not know enough and not giving Sebastian enough carbohydrates or calories, or vitamins, and watch him like a hawk, but his appetite is quite good, and I had just made him pancakes from coked veggies from the soup, three eggs, and one shredded raw carrot plus a little salt cinnamon and xanthan gum, and fried it on coconut oil and a little bit of butter and he ate all of them.

Changing the diet changed much more than I ever expected it to change. Sebastian is calm. He was watching me sitting quietly on the rocking chair, and he listened to all my explanations looking me strait in the eye, and then watched patiently when I fried the pancakes. On the picture he looks at the pancakes and he seems to understand that they are hot and he has to wait for them too cool of.

What to eat? What to do?

Sebastian did not eliminate since Tuesday diarrhea, my place is an cosmic chaos, and in a need of very serious scrubbing, I am working today, and I do not know what exactly I should give Sebastian to eat.
He is at his die-off still, darker circles under his eyes and, white tong, low energy (way to low for my comfort), but his skin is clear, his breath fragrant (it smelled for years like dead mouse from constant congestions) his stiming less intense and less frequent but that may be due to his lack of energy.

Yesterday I caved in an given him a piece of watermelon. But he had just enough energy to walk from the car to the bed, but not enough to climb on it. So he was laying, his legs hanging on the floor.
I just wish I new what to do.
I signed up to Yahoo support group for GAPS but they post about 300 messages in two days, some very informative some irrelevant for my use, I do not have time, to sort them all. I am learning very quickly gaps diet lingo from them. It is though like looking into quite strange universe with people swapping recipes for smoothies containing exotic ingredients like raw yolks and all king of things I do not even know how they look like. Tis is crowd not afraid of raw milk, egg whites, or enemas. They intimidate me a little.

Thursday, June 25, 2009

Fenwood Farm

It was first hot day of the summer today. I do not tolerate heat well.

We went to Fenwood Farm to get some organic chicken. It was quite a ride through beautiful country roads. Sebastian fell asleep in the car. He got over his diarrhea from day before, but he is weak and bit too quiet for my comfort. I know how he normally is, and although I appreciate less wired and more relaxed boy I worry that he will get too weak. He eats well though, even today. He does not want to drink chicken broth. I have to spoon it to him.

On the farm we were welcomed by three generations of women and a big bernese mountain dog that was much bigger than youngest of the ladies. I bought some frozen chicken, eggs and some turkey. All organic. We also ordered big box of organic chicken bones we will have to pick up on Thursday. That will make us a lot of soups and save bunch of money.

We came back home just to have a short visit from old and very dear friends. Sebastian did not wake up till 9 pm. He was exhausted and still suffering from radical changes to what he eats, so I did not have a heart to wake him. That is why we are up now. I had a little nap with him so it is not so bad. I have to make his lunch for tomorrow.

Tuesday, June 23, 2009

Diarrhea & probiotics

I did not know that one can get diarrhea from too strong probiotics. Now I do.
I missed part of the book that said to start from 1/10 of the capsule. I gave him one small capsule in the morning. He is used to getting high number probiotics for a long time, so I did not expect problems. We had explosive afternoon. I am not quite sure what to do next.

Monday, June 22, 2009

The hell

The hell is when your child wakes up in the middle of the night , in wee hours of the morning, crying. And you do not know why. You know he is in pain. You just do not know from what. Is it his tommy? Is it his eyes that feel like somebody poured sand in them from allergies? Or may be it is a headache or nosia or sore throat. And he is sitting on the bed crying and biting his hands and feet, trying to grab and pull his only caretaker hair or face, eyes full of tears and anxiety. and I sit beside him and try to think. What is it? What to do? So I decided on Allergy medication, and had to force the dispenser without being bitten. And he quiets down. Cover is wet from urine from the overflown diaper, but it is Ok just a little bit will wash it later. Now we can sleep for Two more hours till dawn. And I remember when he was younger and that was happening almost every night. And think I could not go through it again.

Sunday, June 21, 2009

Human Rights Comission

I called a lawyer few months ago to ask if they would take my case, since other parents took that rout. They wanted impossible for me amount of money, and advised me to contact The Ontario Human Rights Commission. I did, waited three months, was contacted interviewed, and after few I weeks had an answer. First on the phone, so I asked for something on paper and here it is.

Click on image to enlarge.

Saturday, June 20, 2009

Appetite

I cooked white part quarter chicken for broth today. I put it out on the counter too cool off. It was just warm when Sebastian came and reached to it. He is hungry lately, and although he never before ate meat unless it was finely chopped or blended, I gave him a little piece. He put it to his mouth and ate it. I gave him another piece and another, and another.

The picture shows what was left out of entire quarter chicken. Something like that never happened before, and makes me a bit uneasy. Is it OK to give him so much food? I have read that appetites get quite ravenous after starting SCD but it still takes me by surprise.

To do list

Could somebody kindly wash my dishes and wash the floor and do the laundry and play with Sebastian and go shopping and read the diet book and finish my computer work and do my taxes and close the whole where squirrels get into attic and cut the grass and write more letters to officials when I post this?

It would be greatly appreciated.

Thursday, June 18, 2009

Brown poo

Little triumphs can be big.

I am compulsive and filled up with anxiety poo watcher. I watch what comes out of Sebastian other end everyday with trepidation.. Since sebastian was 8 months old and started solid foods he was constipated. I was printing calendar pages and had them hanging over the toilet with a little pencil on the string and I marked his bowel movements on them for years. I needed to know when to give him suppository. Frequency of his bowel movements and texture of his extractions improved greatly when I started him on probiotics at two. I also was adhering to Gluten Free Casein fee diet as well as I could.

When I found out about Specific Carbohydrate Diet and I have read somewhere that I should take him of soy, so I substituted soy milk with fruit juices; pear apple and peach. Sebastian started producing so much mucus it looked like jello colored same as the food he ate; green, yellow, orange. I made pictures and showed to my family doctor. She referred me to gastrologist at MacMaster Hospital. We waited over six months for an appointment. I had big hopes. He did not look at the pictures, he said I am taking him from much serious cases (wasting his time) When I suggested that his gastrointestinal problems might have something to do with his autism he looked at me like if I was crazy. It was a scene . I remember I cried . They ushered us to the door hastily.

My neighbor and a mother of three suggested taking juices off his diet. She have heard about baby diarrhea caused by too much sugar. I did that. Large amounts of mucus went away, little bit of it remained always at the end of his stool. Presence of mucus is an evidence of inflammation in the intestine. It bothered me.

His stool was always light in colour from whitish yellow to orange with very visible undigested food. Hard in the beginning unformed at the end. I could recognize peas, carrots, apples, bananas and watermelon. It was also very smelly. It had unnatural chemical factory smell. I was examining it every day, and every day I had uneasy feeling looking at it.

Last week I had surprise phone call from parent of 5 years old girl. I have not met her yet. She shared with me a lot of ideas, one of them was GAPS diet. When I have read about it all of the sudden it all made sense to me. I ordered the book, but before it even came I put Sebastian off milk and starches, and cooked him soups from chicken and baby goats and vegetables, and doubled on probiotics he was taking before. Results were immediate. Withdrawal die off reaction came with the vengeance right next day. But because it was predicted I did not panic. He did not eliminated for few days and yesterday I gave him suppository. His poo was BROWN. And smelled sweat like hey. That is probably from probiotics. Alleluia!

My brown poo dream come true. It is not easy not to give him his favourite pancakes, and chips, and milk, but we will keep at it. May be more of my dreams will become reality.

Wednesday, June 17, 2009

Tips for Summer Travel with an Autistic Child

Here are very sensible travel tips I could of certainly made a good use of last year when Sebastian and I went overseas in the summer. I ended up cutting my hair off very short to prevent him from pulling it. I could not literally get him out of my hair any other way. We would be asked off the plain in the middle of the ocean if flight attendants were listening to passengers demands . People were bothered by his high pitched screams and kicking.

Traveling with kids of any kind can be trying on a parent trying to get where they’re going and keep the little ones happy along the way. Many families of autistic children feel even more pressure when traveling because of their child’s special needs and some won’t take trips or even go out to eat for fear that their child will be set off by unfamiliar surroundings. Recent events, included a mother forced to disembark from a plane with her autistic son, complicate travel even more for many parents. Travel can be a great learning experience for children, however, and with a little extra preparation and planning you can take your autistic child on a great trip this summer.

1. Have a plan. It’s essential that you become a great planner if you’re going to take an extended trip with your child. Create a schedule of what you plan on doing each day so you’ll know just what to expect and can plan for the majority of things you’ll encounter.
2. Prepare your child. A few weeks before you depart, start giving your child pictures and information about the places you’ll be visiting and staying. A calendar, drawings and a fun plan of what you’ll be doing can all be helpful to make your trip seem like less of a departure from routine and something more fun to do.
3. Consult with businesses and services. Many airlines, theme parks and tourist services are more than happy to work with parents of autistic children to ensure that all involved have a good time. Some will allow children to bypass long lines, sit in special seating or just work to make sure that they’re comfortable. Additionally, letting businesses know ahead of time gives them time to prepare so they’re ready when you arrive to meet any special needs.
4. Consider your child’s needs. Each child and his or her experience of autism is different so what works for one parent may not work for you. Since you know your child better than anyone else, figure out what will work best for him and work to accommodate it.
5. Don’t be afraid to explain. There’s a pretty good chance that along the way on your trip, someone will raise a question about your child’s behavior. Don’t be afraid to explain about autism. You’ll be raising awareness and potentially getting more understanding for your child.
6. Bring something calming. It’s important for many autistic children to have something that makes them feel secure when they’re in a new or overwhelming place like an airport. Give your child access to these items whenever they feel they need them.
7. Provide support. When you’re traveling it’s especially important to praise or reward your child for behaving well. Make sure your child knows what a great job he’s doing and provide constant reinforcement along your travels.
8. Enjoy the ride. Taking a trip with a child, autistic or not, can be an adventure to say the least. Aside from all the stress and planning don’t forget to simply take time to enjoy being with your child and seeing new things. That’s what traveling is all about.


Remember that even if you’re prepared unexpected things can still happen and your child may have the occasional meltdown. Don’t let that deter you from going places and allowing yourself and your child to see the world.


This post was contributed by Kathleen Baker, who writes about online nursing schools. She welcomes your feedback at KathleenBaker3212@gmail.com

Tuesday, June 16, 2009

No milk - day 4

Today is our forth day without milk. Day with some victories and some defeats. Yesterday I gave in and gave Sebastian one rape banana in the late afternoon. He should not have any sugar foods in first stage of the diet, but he was so lethargic that I was wandering if I should take him too school or to the doctor next day. He perked up and than became as cranky as he used to be couple of years ago. I had flashbacks. I do not think I could go through it again. He waken up may be a bit quieter than normal but in reasonable mood this morning, so we decided to go to school for half a day.

The difficult part was at home when he was hungry but did not want to did not want to eat cooked baby carrots or soup or drink chicken broth. Frustrated he started crying around seven in the evening. I was crying too separating baby goat meet from bones, I just cooked for him . I do not like cooking and doing anything with meat . And it is very frustrating experience not to be able to give you child food he ask for and listening to his loud sad cry. So at one moment we were both crying.

I tried to think that no kid starved himself unless they had some physical disfunction,and Sebastian will start eating what he is offered even cooked baby carrots when he will become hungry enough. And I can do it for couple of weeks and will stop if I do not see significant improvement in his digestion, and continue if I will see it, and I can not stand looking at his stool and thinking that something is seriously wrong with it. Then I blended the soup and he first time this evening ate some of it to my great relief. He must of been very hungry by then.

Sunday, June 14, 2009

Die-off reaction

Sebastian drinks over one liter of milk a day. I decided to try GAPS diet I have learned about lately, and when Sebastian did not drink much milk during the day on Friday I saw it as a window of opportunity. I did not give him any milk at night. He drunk some water, but on Saturday he slept longer than normal, had naps during a day was lethargic and was a bit warm. Today is almost the same. That is exactly what I did not want to do - starve , or upset him, but from what I was reading about die-off reaction it is typical and severity of it tells me that Sebastian had a large amount of bad bacteria in his gut that are dying off now in large numbers. I do not have my book yet, and I think I might jump to it all too eagerly but I did not want to miss the opportunity that just presented itself.

He drinks water, I have made him take spoon of cod liver oil, some chicken broth, and couple of spoons of soup. I resent forcing him to eat when he does not want to. But it feels to me like a right thing to do. 
That diet promissed immediate results and so I have it. 
Here is my boy resting. He must feel awful. I hope it is all worth it.

Saturday, June 13, 2009

GAPS diet

When I put 2 year old then Sebastian on GFCF diet I was full of hope. I did not see much difference in him though. The only noticeable difference came when I started giving him probiotics - his stool texture and regularity improved greatly. It did not fix the problem though. Then I have heard about Specific Carbohydrate Diet. I was not able to adhere to it 100% but I stopped giving him soy milk . Did not see a difference. I have cringed since when I heard about any new diet, specially SCD.

Since last year he is on raw goat milk, and he had significant growth spurt ( over three inches in a year), and first time in his life he has some fat under his skin. He was just bones before that. But his stool is not normal. No more large amounts of mucus, but light yellow in colour, hard at the beginning and soft at the end. Also a lot of undigested food (yesterday I noticed pink watermelon he had for snack earlier, sometimes I can recognize banana in his stool too, and apples look completely indigested like if he just chew and spat them up ) I look at his stool everyday and think it is not normal!

Yet going on another diet and exclude again 85% things that he can eat from already very limited menu, and wait for the results or no results for months, and give him another supplement, or another injection, probably using force, makes me feel like screaming: I can not do it - call me inadequate, lazy, not caring - I can not do it anymore!

When parent of other autistic child told me about GAPS diet just a few day ago, I was skeptical. It is Specific Carbohydrate Diet, but it is also a program with stages designed to heal the gut and rebuilt the healthy flora. It is bit different because it allows fermented milk products like homemade yogurt from the beginning. It also recommends fermented foods. It promises instantly noticeable effects unlike the other programs. Here is the page with good description of it. Designed by Dr. Natasha Campbell-McBride neurologist and nutritionist. She has written couple of books about it. Somehow it makes a lot more sense to me - long time dietary sceptic and reluctant follower. And most importantly it is feasible. Even to me - not avid housekeeper or cook.

I am going to try.
Wish me luck :-)

Friday, June 12, 2009

Letter to Minister of Education

Maria Bunda
Hamilton, Ontario
www.tooautistic.com
May 18, 2009
 
The Honourable Kathleen Wynne, Minister of Education, 
Mowat Block, 
900 Bay Street, 
Toronto, Ontario, M7A 1L2

Dear Minister  Kathleen Wynne

My name is Maria Bunda. My son Sebastian is six years old and about to enter the school system this year.
 
Sebastian was was diagnosed with autism a month before his second birthday. During the waiting period for therapy funding, I spent all resources I had, as well as private sponsors' aid, to provide IBI (Intensive Behavioural  Intervention) therapy for my son. Funding for his IBI started in February 2007, and the decision to terminate his funding was made in November 2008. Sebastian has been attending the Behavioral Institute Children's College, a private institution with an outstanding reputation, where he receives excellent, highly structured, intensive therapy that is the only scientifically proven method of helping autistic kids. In spite of his severe autism he has made significant progress during the time he attended. His self-injourous and aggressive behaviours have decreased. He is now toilet trained and has gained some essential self-help skills. He is now in the process of developing communication using signs and pictures.

My concern is that if Sebastian will be removed from this highly structured environment he will stop learning new skills, or what is worse, will loose skills already gained. After meeting with school officials at Saint Lawrence Catholic School in Hamilton, it has become clear to me that in spite of their best efforts, at the present time the school system is not able to provide an environment that my son will be able to learn in, since low functioning autistic children do not learn from their environment by observing and mimicking. 

The Behavioral Institute Children's College employs a team of professionals consisting of therapists, senior therapists, clinicians, and psychologists, all experienced in the specialized, scientifically proven method based on Applied Behavioral Analysis used in the treatment and education of autistic individuals. Thanks to their experience and efficiency, the Behavioral Institute Children's College is able to provide this service for twelve months of the year with one two-week brake in the summer and one two-week brake in the winter for about $70 000 dollars a year. The cost of this treatment is thus comparable to the $62 000 that the Ministry of Education will supply the Catholic School Board for the enrolment of my son in the standard school system. This latter circumstance will ensure that my son will be kept safe from injuring himself and others, but will not provide for him any real opportunity to learn for 10 months of the year. My son will have acess to an individual care provider during the hours he is at school, but, because this person will not be fully trained in the IBI therapy and techniques, this will amount to little more than paying out $62 000 a year for a specialized babysitter.

I understand that Ministry of Education is making an efforts to accommodate the growing numbers of autistic children entering the school system. I know that teaching assistants are receving IBI and ABA instruction. But these are mostly part-time courses and seminars, and are able to introduce the treatment principals, but do not provide a sufficient amount of practical, hands-on experience. ABA technique is often counterintuitive and requires a great deal of practice and skill to be implemented effectively. Also, ABA therapists need the support of highly trained professionals that can adapt strategies and curriculum to the highly specfic, individual needs of the students. Unfortunately, at the present time the Ontario School system cannot provide the level of support my son needs to learn, grow and thrive.

Removing Sebastian from the care he currently recieves at the Children's College will deprive him the chance to achieve his full potential. It is, in essence, denying him his right to a proper education.

My request to you is this:

Because it will take some time for the school system to develop the ability to provide a sufficient learning environment for kids withe severe autism like my son (and my son does not have time - he needs his education now, in his crucial, formative years) and since he is already comfortable and well established at the Behavioral Institute Children's College, could you order the transfer of funds that normally would be given to the School Board to the Behavioral Institute Children's College? This would be the most efficient way to use hard-earned tax payers' money, the best chance for my son to achieve his full potential, and the most efficient way to help my son avoid costly life-long institutionalization.

I Appreciate your attention in this urgent matter. 

More information about my son, documents, videos of his therapy, and our struggle to help him to achieve his full potential as well as this letter can be found at www.tooautistic.com

Sincerely, very concerned mother

Wednesday, June 10, 2009

Cat herding

I often get advice from people I talk about my problems to that parents of autistic children should organize and rally. There is power in numbers they say. And they are right.

The difficulty is in the fact that herding cats would be easier.

Organizing rally with critically ill patients all hooked up to IV would be easier. Media would come. Just picture procession of sickly looking people in hospital gowns all pulling IV units marching through the streets. Big dramatic picture. But IV units would not scratch or bite themselves, attacked one another, have meltdown or dashed on the street in to oncoming traffic.

But it can be done.

Sunday walk was a lovely event and great success. A lot of energy and enthusiasm and work was invested to organize. Cheerful looking, feel good event with balloons , clowns, music, and teams of people in colorful t-shirts. It felt great to be there to feel the brotherhood of other people who go through similar experiences.

And then what? We go home. Over thousand of little kids are still on hoplesly long wainting list for treatment missing their window of opportunity for recovery, or waiting to get on waiting list, others are kicked out of treatment prematurely, thousands go to scholl where they do not have suffitient support to learn. Tantrums, selfinjury , divorces, nervous breakdowns are going on in privacy of thousands homes.

Sun is shining and lives are being destroyed and kids who need help silently slide everyday deeper into mental disability. People who have power to change the situation are not interested. Kids go home with their parents. Out of site out of mind.

Monday, June 8, 2009

"Clinical Continuation Criteria" only in Ontario?

I found this post on one on the parents networks:
When RAPON developed their "Clinical Continuation Criteria" they only found ONE other program that used a continuation criteria, which they referenced in their document as "Region 6 Autism Connection:  Early Intervensive Behavioral Treatment 4-Way Agreement.  Stockton, CA:  Author:  2004.  Accessed on-line March 31, 2006, at http://www.sjcoe.org/EIBT.doc."
 


This document has been pulled from their website and the criteria has now been deemed "corrupt".  The IEP laws are extremely comprehensive and state that continuation guidelines are to be "person-centered", based on specific "individualized" needs, goals and objectives. The 4-Way's continuation quidelines have been deemed as "discriminatory and favor the special interests of agencies".
 


This is good news for all of us since the only other place in the world that is using a "continuation criteria" for IBI is considered invalid and can not be used.
 


Let's see if the Government of Ontario tries to apply these criteria. We can simply use the American legal cases to justify the invalidity of a continuation criteria....someone else already fought the battle.

Government of Ontario uses Clinical Continuation Criteria as stated in this letter to me. Who will challenge them legally ? Me? Where will I find the money for it? Will the Human Right Commission help us? You will soon find out.

Sunday, June 7, 2009

Autism Walk

We just came back from the walk. In spite of my worries Sebastian just marched through it all. The downtown sites and sounds seemed d to be a bit much for him at times but he took it with stride. I love my boy sooo much.

 





 





 





 





 





 









First time at Eaton's

After the walk we went to Eaton Centre. We went for an escalator ride.

Saturday, June 6, 2009

Preparations

The weather is fantastic lately. I enjoy pre-summer time with bright days, cool nights, no flies or mosquitoes. I eat well, and feel better.

We are going to Autism Walk tomorrow. I registered late and was lucky to get a T-shirt for myself from somebody who could not attend, but I did not have an attire for Sebastian. I had the iron-on "tooautistic.com" sign, that I have made for myself couple of months ago. Sign was too big for Sebasian's t-shirt, but I have split it to three lines and it is fine.

It is always a bit unnerving to go to new crowded places with Sebastian for me. But tomorrow we will have support from Children's College staff. They are very beautiful people inside and out.

I will try to make some pictures. I am sill a bit nervous though. It is difficult to predict all that could happen. And I am worried just a little bit.

Thursday, June 4, 2009

IBI Benchmarks Clarification

My friend forwarded to me following clarification

Dr. Nancy Freeman, C. Psych and Panel Chair for the new IBI benchmarks, has contacted Autism Canada in regards to the introduction to the IBI Benchmark article sent out on May 14, 2009. The introduction to the article written by Taline Sagharian states:
 
 "While there are inequities right across this country, there are many families in Ontario that are receiving no IBI support. This may be a result of waiting lists or, more recently, being discharged from the government funded IBI program as a result of new benchmarks."
 
We would like to clarify that families in Ontario are not being discharged from the government funded IBI programs as a result of the new benchmarks. In actual fact, the new benchmarks have not yet been instated. We apologize for the mistake.

This begs the question that, while we know children are being discharged from the government funded IBI programs, under what criteria are they being discharged under?   
 
The Benchmark Panel Report has been posted on the Autism Ontario website for months, and I encourage you to read it if you have not done so previously.  

Please click here to view the report. (link does not work)
 
Autism Canada encourages you to write back with any feedback you may have on the Benchmark Panel Report so that we may post it in future newsletters.



Oh boy! How do I comment? Dr. Nancy Freeman is right. Not benchmarks. Clinical Continuation Criteria, as clearly stated in this letter.

Discharge of severely autistic child from life altering therapy is a termination of the only scientifically proven treatment for low functioning autistic child.... or not?
Crime remains the crime even if the weapon it was committed with can not be identified. All we need is a victim. And we do need to look far for those.

Wednesday, June 3, 2009

Letter to Minister Matthews

I have been working lately on few letters to out honourable government officials.
Here is my first letter to Honourable Deb Matthews Minister of Children and Youth Services. I really do not think it will take just a letter to change dreadful reality of autistic children in Ontario, but it is a necessary step.

Excuses

It has been difficult lately to write from two reasons.

One, normal state of affairs in our kingdom is that I hardly cope. And I made myself to busy promising I would do some work for people that requires concentration - and I do not concentrate easily. I do not motivate easily. I just stress.

Second reason is this: I become self-conscious. I started to worry about what I write. I feel like I am in serious fight for Sebastian's future. I am not kind of person to worry about what anybody thinks about me, but all my life my anonymity was giving me an absolute freedom to be, say or do whatever I wanted.. I enjoyed and cherished every day of it. But now I am one of, and therefore representing parents of autistic children, and my actions and especially words on this blog will have direct or indirect effect on my sons future. That makes me quite uneasy. And it is also good excuse not to write, since whatever I do write should be "appropriate".

I have to ease up a little.