Friday, July 31, 2009

At Queens Park - day8

Today I was told that we have to stay on the yellow lines if we want to protest. If we are not on the lines we have to take down the sign. The sign is attached to the backpack and we have to take of the backpack off when we want to walk in the park or take the brake in the shade. There is no shade within the yellow lines, and it is hard to stay in the direct sun for a long time, but Basia took the initiative and used big umbrella Tanny lent us again in the morning. It works great, and pictures are here to prove it.

Sebastian is not the only "too autistic" to get therapy child in Ontario. I have gotten an email from father of the autistic boy who in age of three was assessed as too autistic to even get on waiting list for the therapy. I think those stories are like rats; for the one you see there is fifty you do not. But I hope all of them will be exposed soon and people responsible will answer.

Thursday, July 30, 2009

at Queens Park - day7


Today there were thee of us under Ontario Legislative Building. I do not have a picture of all three of us because battery in my camera died. I have the picture of Basia and Tanny who came with her own home made "tooautistic.com" sign. How nice is that? She is a super woman.

Today was another day with great weather. I know how busy parents of autistic children are. I know how difficult children are to handle. I know how difficult it is to organize and coordinate. But it is quite possible to make a Queens Park a casual summer destination for gatherings of autistic community. There are trees grass paths and benches. Tourists come and go, sun shines. Ontario Museum and Ontario Gallery of Art is close by. It is worth the drive, or a street car ride. Make yourself a sign, register the event, promise to show up again. Chat with other families of have a great time on your own. There are thousands of us. We could flood that park with joyful chatter of our kids.

I am getting a lot of feed back and encouragement from other parents. Everybody has a story similar to mine. I feel their pain, and frustration. I hope that things will change. There is no other way but to gracefully go forward.

Wednesday, July 29, 2009

at Queens Park - day6


It was raining today. Tanny mother of Sebastian friend from Children's College gave us an umbrella. Her son who by the way was never autistic enough to even get on waiting list for therapy in spite of being developmentally in one percentile at the age of four. Sebastian is being discharged because he did not reach one percentile. It is hard to find the logic in those numbers.

The umbrella was very big and we needed every inch of it because it was raining heavily and there is no roofing for protesting folks. Rules are we have to stay on or behind the yellow lines. On the picture my biggest supporter and helper who did not hesitate to sacrifice her vacation to help her childhood friend behind the ocean.

I did not figure out yet the best way to park, and we experienced today public underground parking in one of the new condos. It was expensive, confusing, I had problems paying with my credit card, and we needed a lot of help from friendly people to get us out of there. Tomorrow we will try something else.

Tuesday, July 28, 2009

At Queens Park - day5

Today we had a visit and friendly chat with security, he refreshed me on rules of protesting and wanted to know for how long we will be doing this. I wish I knew. I was also talking to nice young man from Cuba who asked what we were doing, and he said that he was surprised that things like that are going on in such rich and seemingly well run country. I agree I am also surprised. On our way to parking people were asking about our sign, but most people who were supportive were saying something about having autistic or disabled person in their family. I think that if autism will spread the way it recently does soon everybody will know somebody with autism, or they will have them as their neighbor, or member of family. God show us a cure!

Monday, July 27, 2009

At Queens Park - day4

Another beautiful day. Today Basia and I went to the Queens Park when Sebastian was at the Children's College.

I am trying to figure out what is the best way to get to the Queens Park every morning to stay there the longest. Today we took a streetcar. It is a royal ride but it took us an hour and forty minutes to get back to pick up Sebastian. We got there just on time only because I was just testing the waters today, and we left very early. It cost $9 for two persons tickets both ways. Parking would cost the same and we would give a lot of fliers on the busy streets on our way.

I have to improve my hastily put together little handouts. I hate wasting the paper, but I think I need to put more information and maybe cutting the letter size page on three would let me do just that.

Basia took over the cooking. She made the dinner today in about twenty minutes. It was delicious. How lucky am I?

Sunday, July 26, 2009

Taxes and curious plants.

Sunday morning around 10:30 just at time we were supposed to live to Toronto, there came quite vigorous and stormy weather, with a lot of rain. I was thinking then that that weather is going to Toronto, so standing in front of Queens Park will simply not be possible. We are not well prepared for rain. I decided to use the time instead to finish up my way overdue taxes. The storm missed Toronto, and went over the lake, but I have my taxes done.

Basia is standing for me in the kitchen. I am so grateful.


The picture shows that our bathroom is being invaded by botanical life forms.

Sunday morning

I was working on Saturday, and it was raining, and we had to little time to go back and forth from and to Toronto, so we skipped a day of protesting at Queens Park. We will go today again. Tomorrow is the first day of school after summer break In Children's College.

Yesterday I was anxious all day for no reason at all. Today Sebastian waken up fine but now has an angry outburst. It is first time since Basia is here so she is a bit startled. Every child is different, and autistic children do things parents of typical children are never put through. Takes some adjusting.

So that is how our Sunday started.

Saturday, July 25, 2009

At Queens Park - day3

We were at Queens Park again yesterday. The weather was very good. We dropped off another letter. Sebastian was in a great mood and having fun in the park, and not causing any trouble at all. As if he know.

We walked all through the city , and had late lunch at Kings Noodle. Pictures came out great.







Answer from Mininister Matthews

I have written a letter to Minister Deb Matthews. You can read it here. I received answer few days ago but was too busy to post it.
Here it is in all glory . It says that money spend on autism programs, but number of children receiving the therapy doubled. My question is where the money went? Shouldn't the number of children triple also? She is proud of the fact that wait time for diagnosis reduced. My question is why do kids have to wait for so called official diagnosis at all? Why is not a diagnosis from developmental pediatrician enough? And letter also mentions nothing about actual wait time for therapy funding doubled, that it is now 3-4 years. And she mentions nothing about the fact that kids are receiving half or less scientifically recommended amount of hours when they do receive the treatment.

That letter could also be condensed to two letter word. NO.

Click on the image to enlarge.

Thursday, July 23, 2009

New fridge.

This morning we were waiting for delivery our new for us, little used, little dented/scratched fridge, longer than expected. It was also pouring outside. We decided to stay home, clean the new fridge, and catch up a bit on house work, and skip protesting today. As beginners, we are not equipped well yet for rainy weather.

Here are the pictures of the fridges. Since we ventured into a GAPS diet I have to cook EEEVERYTHING, I NEEED a good fridge. I have chosen the biggest one they had in the store. It felt much bigger in our little house.

In afternoon we went for a walk to grocery store and the park to show Basia around. She really likes it here. We talk a lot like when we were two teenagers, wondering about what we see around us, and trying to figure out how we fit in it all. Not much has changed in three decades.

Wednesday, July 22, 2009

At Queens Park - day2

We went to Queens Park again today. We stayed in the shade, I filled up an application for an demonstration, we talked to a guards They were very polite, informative and helpful. We gathered more information, and rushed to the car before parking expired.




Sebastian was very patient and weather was great. Tomorrow I need to find better parking so we could walk through China Town. Basia enjoys new sights, and is very helpful and enthusiastic about making pictures and handing out fliers as we walk through streets. I do not know what I would do without her.

Tuesday, July 21, 2009

At Queens Park - day1


We went to the Queen's Park today to hand deliver letter to Premier McGuinty. Sebastian was in the stroller, I carried an overhead sign, my friend Basia followed us and was handing out the fliers and making pictures. We all were wearing our homemade tooautistic.com t-shirts. We were quite a party.

We have learned that it is not possible to deliver the letter to the building, since for safety reasons mail is processed in the portable outside it. We needed to go to the bathroom though and guards were were thinking that it was also some kind of protest ploy at first, and they said we could not go in there wearing protest materials like t-shirts with tooautistic.com logo on it .

I said I could take the shirt off then. They said they could not let us in without the shirts either. But then they called somebody and supervisor guard appeared and she resolved the situation escorting us to the side entrance washroom. We were grateful and relieved.



We received some papers to fill out with rules of how to protest, and after a friendly chat and some pictures we delivered the letter. We had some lunch in the shadows of the Queens Park trees and we went back all the way through the city to St Lawrence Market handing out the fliers.

It was a grand day. We will repeat tomorrow.

Letter to Premiier McGuinty

Maria Bunda
Hamilton ON


July 20 2009

The Right Honourable Dalton McGuinty, Premier
Legislative Building
Queen's Park
Toronto ON M7A 1A1

Dear Mr. McGuinty

I'm writing to you as a concerned citizen and mother. The number of children diagnosed with autism in Ontario has been steadily growing. When my son was diagnosed with autism four years ago, I was told by his doctor, Peter Szatmari, that 1 in 360 children were being diagnosed with autism. Now, that number is 1 in 150, possibly even higher. Recent studies in the UK showed that 1 in 60 children is within the autistic spectrum. I understand that, according to the Ministry of Children and Social Services, the amount of money spent on therapy programs for autistic children tripled in recent years. It did not escape my attention that the number of children receiving therapy has only doubled. The waiting period to receive therapy also doubled in this time. My son received funding after two years of waiting. Now, the average waiting period has increased to four years.

It is scientifically proven that about 50% of children who receive early and intensive, forty hours per week intervention therapy based on Applied Behavioural Analysis improve so much that they are no longer classified as "autistic", and can join mainstream classrooms. The other 50% of kids show great improvment in their level of functioning, and require less support as adults. The difficult reality in Ontario is that only children of parents who can afford the high cost of Intensive Behavioural Intervention therapy can receive it in a timely manner. Other kids wait, missing their window of opportunity for recovery, and silently slip into retardation day after day, for years. Even after the inordinately long waiting period, they receive only a fraction of the recommended forty hours a week treatment. Most kid receive twenty hours a week; some get even less. It has been proven that ten hours a week or less of therapy brings little or no results. After six months of treatment, children are assessed, and if they have not made enough progress, as defined in the Continuation Criteria document, they are cut off from therapy. This is what has happened to my son, Sebastian. The decision to take away his IBI therapy funding was made when he was five-and-a-half years old. Since he has now reached school age, in September he will be put in a regular classroom.

The school system in Ontario is not ready to accommodate the needs of severely autistic children like my son. He makes steady progress only in a highly structured environment such as that provided by the Behavioural Institute Children's college that he has been attending for over two years now. In this time he has gone from exhibiting severe self-injurous and aggressive behaviour to being a compliant child who can respond to basic verbal instructions. He has also learned fundamental life skills such as dressing, toilet training and feeding himself. He is now in the process of learning how to communicate with pictures. I am concerned that if his therapy is terminated before he masters a meaningful way of communicating, he will grow up to be a very frustrated teenager and adult--an individual who has not been able to reach his full potential.

This concern is raised after meetings with public school officials where it became clear that the school system is not ready or able to provide a level of support that is even remotely similar in quality to that which Sebatian is currently receiving in the Behavioral Institute Children's College. While the cost of providing IBI therapy for Sebastian is high, this short term cost will be far less than the alternative of lifelong assisted living arrangements. Apart from the economical logic of continuing his therapy, there is the issue of human rights, and my son’s right to a proper education. Autism is a disorder which, when met with the proper treatment, can allow afflicted individuals to become fully functional, and often highly valuable members of society. These same individuals, should they been denied treatment at the opportune early stages of socialization and biologic growth, will likely remain at a severely diminished level of functioning and life possibility. The current governmental policies fail to recognize the social crisis posed by autism and autism spectrum disorders and comprise a failure to address the basic human rights (to proper education and socialization) of afflicted individuals.

The cost of care for a low-functioning autistic adult, can be as high as $ 300,000.00 US per year, a cost that continues for many decades of their life. The yearly cost of $60-80 000.00 for therapy during early childhood years--as this is the most effective way to improve individual's functioning, and can even lead to full recovery--seems, in this light, to be a good investment.

There is no question in my mind that we are in the midst of an autism crisis in Ontario. Given the statistical rise in autism diagnoses, this situation will only worsen if action is not taken now to address the need for more and longer access to beneficial therapy programs such as those provided by the Behavioural Institute Children's College. Autism is a disease that destroys not only the lives of children afflicted with it, but those of their families as well. The divorce rate amongst parent's of autistic children is as high as 80%. Siblings of autistic children experience childhood in families living under crushing stress, financial pressure, and emotional turmoil. Autism silently corrupts family structure, affecting society for generations to come. The autism crisis requires a crisis response, not pseudo-solutions, political gesturing and excuses. Government needs to show great political intelligence and offer real solutions to meet this crisis. As the number of children not receiving adequate care grows, the frustration and despair of their parents mounts. I am just one such parent. My story is very typical of the experience of Ontario parents of autistic kids.

Sebastian now well established at the Behavioural Institute Children's College. Removing him from this highly supportive environment before he can communicate will have disastrous effects on his future. At Behavioural Institute Children's College he is supported by a team of highly skilled and efficient professionals who craft his program according to his specific needs, at a cost of about $70,000.00 a year. The School Board will receive about $62,000.00/year to supply Sebastian with a teaching assistant. This person's job will primarily be to prevent Sebastian from harming himself or others. Even if this professional is somewhat trained in autism-type disorders and therapies, he or she cannot replace a team of trained and specialized psychologists and therapists, such as the Behavioural Institute Children's College supplies.

The decision to share my struggles in raising an autistic child with the public via the internet was not made easily or without hesitation. I value my own and my son's privacy. But I am a mother. I have limited resources and I am running out of options. I am a mother and it is my duty to help my child to reach his full potential. I will not hesitate to sacrifice even more of our privacy to achieve this.

I have already written letters to the Minister of Children and Social Services, and the Minister of Education, but they have refused to speak to my concerns or intervene on Sebastian's behalf. I am thus asking you to address this issue, both on behalf of Ontario parents of autistic children, and in the specific case of my son Sebastian. Funds alloted to the treatment of autism should be used responsibly, in a manner that will be most effective for the individuals involved. I would ask to meet with you in person to discuss this matter further, and to give you an opportunity to meet my son, who is a delightful and precious child.

Maria Bunda

P.S. You can find more information about my son situation, discharge documents, videos of his therapy, as well as this letter on www.tooautistic.com

Monday, July 20, 2009

Bruce Mcintosh comments

Father of autistic boy and autism advocate Bruce Mcintosh has cutting sense of humor I love. Here is what he Has written few days ago on a message board:
Forgive the cynical humour, but I just think the "professionals" you refer to just have it all backwards. They think the government has the financial resource issue and that the kids have an intelligence deficit.

The truth is that the government has an intelligence deficit and the kids have the financial resource issue.

Sunday, July 19, 2009

Airport pick up.

My childhood friend and neighbor came to visit us today. She will stay here for few weeks. I am so very happy. With her around I feel like a young girl again.

We went to pick her up from the airport. Sebastian is very good lately. He even walked on an escalator very carefully, and had a big smile on his face after he got off.

The change of diet made him less hyper. Keeping the diet regiment is very challenging to me. I have doubts if I am doing it right. I worry if he drinks enough water, if he eats enough or not too much carbs, if I should give him his probiotics or not. I do not want to overwhelm his body with die-off reaction, yet I want to heal him quickly.

I think that motherhood should come with magical psychic powers that would let us know in any circumstances what to do, and where to go for help. But magical knowledge does not come at the moment we become mothers. So mothers of the world sometimes have to go around it till they wear off three pairs of iron shoes like in old fairy tale before they find answers.

Saturday, July 18, 2009

Another day.

Sebastian lately is very quiet, or he stims a lot. When I look at him I have my heart broken every day over and over again. Every day I feel like I am helpless, and everything I do is wrong or not enough or both. Sebastian is a child with massive injury. His brain was like an open wound through 5 of 6 years of his life. It still is. I was not able to protect him. I was not able to help him. I do not think about the future. Denial is my good and supportive friend, but when reality hits me, it feels like another kick in the stomach.

Thursday, July 16, 2009

Consultation on the Rights of Persons with Disabilities

Government of Canada online consultation on the ratification of the United Nations Convention on the Rights of Persons with Disabilities
Fill it up here:
http://www15.rhdcc-hrsdc.gc.ca/

Learning how to fly or "Life as an Extreme Sport"

I just have stumbled upon blog Roo's Clues
I love the quote about experience of being a parent of autistic child:

I never would have chosen to be pushed out of an airplane (which is what this felt like), but when you are falling the only thing left to do is to learn how to fly.

Here is the rest of the briliant post.

Tuesday, July 14, 2009

Fight for autistic kids

Parents launch provincial fight for autistic kids Richmond Hill "The Liberal" published this article last month.

Why do we have to fight?
I really do not want to, but parents of autistic children in Ontario have a choice: do nothing and watch their children every day slip silently into retardation and wait till somebody else will come and "do the right thing".

Who will do the right thing?
Our elected officials do not care about autistic children. They will overflow the system as adults with mental disabilities long after next election.
Supreme court do not care about rights of autistic children to achieve their full potential. Autistic kids do not die of not treated therefore treatment treatment of autistic children it is not medically necessary. They do not die, they just become intellectually disable adults. And who really cares about them? Seriously who?

Ontario Human Rights Commission answer to my application you can read here. How many other famillies received answer similar to mine?

Ombudsman appointed to watch what government is doing in answer to parents complaints decides to ... do nothing but promises to watch how situation will develop. Read his answer here

Our elected officials do not care about autistic children. But they will if the situation will reflect negatively on them.

So we (families of autistic children) need to do something. Anything. To help the situation develop.

The situation is very sad. But it is what it is.

Monday, July 13, 2009

Answer to my letter to Minister of Education

I received today the answer to my letter to Minister of Education. It is long, but I think it could be compressed to one two letter word: "NO".

Dear Ms. Bunda,

Thank you for your e-mail to the Honourable Kathleen Wynne in which you shared concerns about your son, Sebastian who will be transitioning to public school system this year. I am pleased to respond on the Minister’s behalf.

The government is committed to ensuring successful outcomes for all students in the public education system, including students with special education needs. We project that funding for special education will increase by $49 million in 2009-10, to a provincial total of over $2.25 billion. This is an increase of over $627 million since 2002-03, or 39 per cent.

The Ministry of Education works hard to improve the learning environment for students with Autism Spectrum Disorders (ASD), by building capacity in publicly-funded schools to meet their learning needs. The ministry is implementing a wide range of initiatives to support students with ASD in response to recommendations of the Ministers’ Autism Spectrum Disorders Reference Group.

The ministry has invested $33 million since 2006 through targeted funding to build capacity in school boards and improve the learning environment for students with ASD. Of this $33 million, nearly $20 million has been allocated for training initiatives. To date more than 13,000 educators have received training including principals, teachers, and teachers’ assistants.

School boards have been directed through the Policy and Program Memorandum (PPM) No. 140, Incorporating Methods of Applied Behaviour Analysis (ABA) into Programs for Students with Autism Spectrum Disorders (ASD) to use ABA methods with students withASD, in accordance with students’ individual education plans, where appropriate. The ministry has also established an annual process to monitor school boards’ implementation of PPM 140.

The ministry has developed a resource guide to support educators in elementary and secondary schools in planning and implementing effective educational programs for students with ASD. It contains information, strategies, and practices that can be used in schools and in classrooms and also includes sample materials reflecting current practices as well as lists of references and resources for further reading. Effective Educational Practices for Students with Autism Spectrum Disorders: A Resource Guide, 2007 is available on the Ministry’s website: http://www.edu.gov.on.ca/eng/general/elemsec/speced/autismSpecDis.html.

The Ministry of Education and the Ministry of Children and Youth Services (MCYS) are working collaboratively to provide supportive environments for students with ASD and their families. Sixteen English- and French-language school boards are funded to implement the Connections for Students model in 2008-09. Hamilton-Wentworth Catholic District School Board is one of the boards funded to implement this model. The Connections for Students model is a joint strategy to support school-aged children transitioning from intensive behavioural intervention (IBI) therapy services delivered through the Autism Intervention Program (AIP) funded by MCYS to ABAinstructional methods in publicly funded schools. School boards throughout the province are expected to implement the Connections for Students transition teams no later than spring 2010 for all children transitioning from IBI therapy services provided through the MCYS funded AIP to ABA instructional methods in our publicly funded schools in September 2010 and thereafter.

In Ontario, the Education Act places the responsibility on school boards to provide appropriate special education programs and services for exceptional students. In addition, the Education Act requires that the special education funding must be spent on meeting the special education needs of students of the board. Accordingly, there is no authority for school boards or the ministry to re-direct the special education funds to private institutions.

Students with autism have a wide range of educational needs, and school boards are required to offer a range of placements to meet their unique learning needs. School boards also offer a range of special education programs and services, including, where appropriate, strategies based on principles of ABA. I encourage you to work with the Hamilton-Wentworth Catholic District School Board and its Autism Transition Team to develop a transition plan as well as an Individual Education Plan that will describe Sebastian’s learning strengths, areas of need and the special education program and services that would be provided to him.

Thank you again for writing. Please be assured that I understand the importance of your concerns as we continue to enhance the public education system’s capacity to support students with ASD.

Sincerely,

Teckla Bryson for

Barry Finlay

Director

Special Education Policy and Program Branch

Please consider the environment before printing this email. Avant d'imprimer, pensez à l'environnement.

Saturday, July 11, 2009

Omega juicer



Last week I bought Omega 2006 juicer. I did not own a juicer before from several reasons.
Reason number one: space.
Reason number two: a lot of washing.
Reason number three: I am not THAT health conscious.
But since GAPS diet people say that fresh juice is good remedy for constipation, and that is our common problem I decided to jump it. Juicing has a lot of health benefits if one juices pesticide free vegetables. That causes me a bit of anxieties. Organic vegetables except of carrots and bananas are very expensive, and I am never sure what I am really eating.


There were two favourites Omega and Breville. I have chosen versatility over speed. Omega 2006 can do nut butters, pastas and other grinding. Omega is also is smaller. Easy to wash. Low speed pressed juices are healthier. And most importantly it is cuter. It has four feet and a snout - looks a little bit like an animal.

Friday, July 10, 2009

Parental Stress of Mothers of Children with Autism artile

Mothers of Children with Autism Have Higher Parental Stress, Psychological Distress article by researchers at the University of Washington’s Autism Center

I think that that is what I am experiencing now. I think that that what I have been experiencing for quite a few years now. Thinking about the future is still difficult.

Tuesday, July 7, 2009

Aborted babies and vaccines.

Sometimes I come across something that raises hair on the back of my neck.
I had no idea that cells from aborted babies are used to produce vaccines. Here is the article

Gut & Psychology Syndrome

It has been some time since I have ordered any autism books. I suffered from the burnout. The sense of urgency to help Sebastian never went away, but I had difficulties going through, absorbing and sorting out information. I have went and did things tat even remotely had some chance of being helpful. I would put away and suspend my skepticism and disbelief and I would go ahead wit even questionable treatments as long as they appear to be harmless. If some shaman would offered to sacrifice black rooster at full moon I would say go ahead we will have free range chicken soup that can not hurt, and if you can talk to healing spirits, well go ahead I do not have good access to direct line.

I am reading Gut & Psychology Syndrome by Dr. Campbell-McBride and after every page I say: Yes? It makes total sense! I have not been so enthusiastic about anything for years.

Saturday, July 4, 2009

Allergy attack

The most plesant day like today can turn omentarely int a big drama in a second thanks to one blow of wind that will bring unvisible pollen cloud.

Benadryl took care of it but it takes up to half an hour till it starts working.

I hope one day we will be allergy free.

Day at home.

Sebastian did something he never has done before. Usually I have on the kitchen table cup with some water in for Sebastian so he can drink whenever he wants. But this morning the cup was empty. Beside it there was juice box with some water in it but with no top on it. Sebastian tried to drink from the box but it did not go well so he poured water from the box to the cup and drank it. I was close to tears. He is able to practical problem solve!

The weather today is perfect. We went to the farmers market, I did some laundry, I am cooking bone broth, made the herb patch, and planted the tomato bushes that were waiting for it for over a week, I jared the sauerkraut, but my house is a dirty mess, grass is high, and I am frantically thinking about all things I have to do, and people I have to call, and I am not quite clear what Sebastian meal will be.
Sebastian is suffering from grass allergies again. He was OK when it was raining, but now he suffers acutely. I had to give him some antihistamine. On the picture Sebastian enjoys the great weather on our yard.

Friday, July 3, 2009

Creating synapses movie.

This is so cool. And somehow gives me hope. Creating the new synapses is what our future depends on. And just the fact that it is possible is a miracle. Yo can see it here.

Now, the pressing question is how to stimulate rapid growth of new synapses in brains of our officials who make decisions about treatment of autistic children . Stubborn stagnation seem to prevail there for some time.

Here is the evidence of it in an article published in Medicine Hat News. And a shorter version in The Sudbury Star.

Wednesday, July 1, 2009

Diets Compared

It is very confusing to read about all the diets, their protocols, their origin etc and sort out the information for individual purposes. Everybody is different and something else can work for them. I just stumbled upon one pdf document that has a lot of diets listed with short description. Very useful. It is good to print it out although it is long (14 pages)