Saturday, October 31, 2009

Pumpkin Pie

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

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



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



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



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

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




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



It is really yummy!

Friday, October 30, 2009

Autism's Media Shadow


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

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

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

Thursday, October 29, 2009

Connecting with Parents at Queen's Park

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

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

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

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

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

Mark Kelley email

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

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

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

Sincerely,

Mark Kelley

Wednesday, October 28, 2009

Media Manipulation



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




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

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

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

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


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

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

At Queen's Park - day 66

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



CBC Connect with Mark Kelley

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

Tuesday, October 27, 2009

Number of Children Awaiting Autism Treatment Balloons

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


Number of Children Awaiting Autism Treatment Balloons

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

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

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

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

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

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

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


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


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

AUTISM TREATMENT




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

1100


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


The Speaker (Hon. Steve Peters): Supplementary?

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


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

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


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


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

Monday, October 26, 2009

At Queen's Park - day 65

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



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

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

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

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

Sunday, October 25, 2009

Fire

When I woke up today, I did not want to get up. I would stay in bed all day if I could. The night before, Sebastian fell asleep after an hour of intense crying. My first thought was: how many meltdowns will he have today? Why do I have to go through it again and again?



But we had good day. Sebastian was in good spirits. The weather was fantastic. I set a fire in a little barbecue our old friend gave us, and I burned a lot of weeds and sticks lying around the yard. It was fun for both of us. It was a new experience for Sebastian. He was looking curiously at the flame. Having a fire is very relaxing for me. I miss it. I wish I had a wood stove but my little house is too little for it.

Saturday, October 24, 2009

Farmers' market in October

It is such fun to go to the land of plenty at the farmers' market. Today was different. I could not get over the shock of realizating our financial reality. I am not a big spender. I do not like shopping, I have been celebrating my own private "spend nothing" days, and buy only things I think are necessary. We wear used clothes. we live small. And yet again I was not frugal enough, not smart enough, not good enough. New extra expenses are on the horizon...how I will manage it? The additional stress feels like if I was run over by a truck.

After Sebastian had a meltdown in the morning I felt like if I could go and sleep for a long time. Stress is accumulative after all. He was fine after while, and we went to the market. In the picture he is holding a little orange pumpkin he got for free from the farmer. Maybe it is a sign I should not worry and should trust that the gods of plenty will remember about us.

Rude awakening.

I just realized yesterday that for over a year I was spending much more than I was making. Nothing extravagant--I am not a big spender, but just a few hundred dollars a month has accumulated into thousands. And there is always some necessary extra expense coming up. For example, last month I payed over $500 for fixing my car. Two months ago it was a used fridge I had to buy, the month before that a food processor. And there are more expenses coming up. Because I was getting money from the DFO, thousands of dollars were always coming and going from my account, and I lost track of it. I had a feeling I might be a couple of thousand in the hole, but over time I dug the hole much deeper than that. And last year I was working less too because of the recession. I did not feel too great health-wise either, so even if I had more work it would have been difficult. So, in case I did not have enough stress lately... We are going to the farmers' market today. But today I will go there with less joy, asking how much everything costs and adding it all up in my head.

This money tree picture is a wish for my financial worries to turn around. Who says it will not grow in my yard soon?

Friday, October 23, 2009

Strategic Survey Conceals Government Negligence

The Ministry of Education has asked the 16 school boards directed to provide the so-called ABA in the schools, to conduct a survey with the families they support. This survey has been structured in a manner that does not allow parents to communicate the truth about what their child is or (more importantly) is not receiving in the schools.
Notice that the option for "None of the Time" is missing.
You can see it here, or download the pdf version here.

This would be funny if it was not so frustrating and absolutely indicative of how self-serving, inefficient and wasteful the administration who should be helping our children is. The next step to improve the results of the survey would be to remove the "some of the time" option. Why not? It would look great on reports. I wonder if it will be possible to find the person or people responsible for approving wasting money on that survey. I just wonder...

Parents of autistic kids have reacted strongly to this and are sending numerous letters to the Ombudsman office. I have posted them as comments.

Wednesday, October 21, 2009

At Queen's Park - day 64


The weather is getting worse again. Ed was protesting today too... times goes much faster when he is aroud and we can chat.

I had three appointments to go to with Sebastian today, so I could not stay long. I was a bit worried about how Sebastian would take this busy day, but he is a champ! We came home late around 8:PM, and I will write about it all later.

Documentaries and eclairs

Sunday night I was watching a documentary on TVO about a musical put together and acted by autistic children. "Autism the Musical" portrays five autistic children and their families. It was very well done. I am not ready yet to watch this kind of program. I react with too much emotion. I can not help but to compare our situation to families depicted in the documentary. I always loose. Sebastian is more severe than most autistic kids, and we have less resources: socially, financially, emotionally, spiritually, intellectually. I have less education and have worse language skills than any of the parents on the show. Most, if not all the kids on the show were higher functioning than Sebastian is. And yet the problems they faced were monumental and complex.

After watching the film I felt more alienated and disturbed than before because I do not think every day about how dire our situation is. I tackle every day tasks, but I do not venture to imagine our future for a very simple reason. It is very scary to think about the future. Sebastian is the only child of a single mother, and does not have an extended family that could take are of him if anything happened to me. His chances to ever live independently are very slim. So I have to live to the age of 100 to be his voice and take care of him. Like the girl in the documentary described by her parents as a perfect candidate for a victim, Sebastian will be unable to defend himself, or even tell what has happened to him if he needed to.

I think watching documentaries like that are dangerous for me. I am not ready yet. Maybe later. The only thing I can compare it to is perhaps watching documentaries about rape victims while you yourself are still being subject to instances of rape. It brings no comfort. It makes things worse. Denial, on the other hand, makes makes things easier and much more bearable.

At times like that my inner child rebels. When I went to Costco to buy some organic baby carrots, an electrical heater and more allergy medication, I picked up box of 15 frozen eclairs, filled with real cream, and I ate six of them at one sitting in the car. They were still frozen. I washed them down with cold coffee.

Sebastian is still allergic to something inside our home, and now I suspect it might be the furnace that started working last week as it was colder. That is when Sebastian started having his allergy attacks. What to do now? I do not know if cleaning the ducts would help. His playroom does not have a vent, so today I bought an electrical heater and a safety door closer. I will try to keep his room closed, keep the air filter on and heat it without blowing furnace air.

My dream is to have a house with heated floors and fragrant cedar walls.

I finished and ate ALL the eclairs on my way home. The rest of the night was not so good. Sebastian had meltdowns, and was pulling my hair a lot and I was short with him. Next morning I could not concentrate and make him a proper breakfast. I stood in the middle of the kitchen like an actor who forgot his lines. I forgot his shoes and underwear, but we make it too school. It is time to put eclair eathing behind me. Thankfully, I do not think I will crave for them any time soon.

Tuesday, October 20, 2009

At Queen's Park - day 63


Today when I came Ed was there, and I was glad to see him again. He was sick last week, but now he is back. We were both in good spirits, and enjoing the good weather. We have met a man from Muskoka who came go get permit for protest next week. . His story was what wild west movies are made of. It should be very interesting

Monday, October 19, 2009

At Queen's Park - day 62



The comeback of warm weather is a good thing. Andrea Horvath came by to say 'Hallo" on her way out.
I am almost happy to be back after a few days break.

Saturday, October 17, 2009

Allergies


Sebastian seems to be allergic to something inside our house.It is very stressful. On Thursday he cried a lot just after he came home from school, so on Friday I gave him allergy medication right after he came home, but it did not prevent a big meltdown. So I put him in his warmest clothes, a jacket is a bit too big for him, and send him off to the yard. And he was fine. and after while medication started working, and he came home and was OK. But he cried himself to sleep, and woken up at six crying, and that is not normal. He never cries without a good reason, and listening to his crying and being helpless is the worst experience of my life. So for now my plan is to buy better allergy medication, and I have made an appointment for alternative allergy treatment. That is all I can do.

I am working today, and we have speech therapy at noon so I have to prepare his food for a day and get myself ready.Busy, busy, busy.

Thursday, October 15, 2009

Ikea furniture and turning the light off!


Last weekend my friend Simon helped me to move my old fridge to the basement. It will house my sauerkraut there. So corner of my kitchen by the door can now become a "mud room" like I always planned. I found in Ikea piece of furniture perfect for storing shoes and can also serve as a bench. I liked it so much I bought a second one for my kitchen "office" yesterday.

Sebastian likes to have me beside him when falling asleep. But he was fussing a bit and I went to the bedroom hoping he would fall asleep by himself. It took him less than five minutes to get up, walk in my bedroom, turn the light on, and crawl under my covers. "Turn the light off!" I ordered frustrated that I have to get up again, not hoping he would follow my command. He got up, turned the second light on, (there are two switches) turned it off again, turned the first light off, and crawled back under my covers. We slept very well.

Wednesday, October 14, 2009

Never ending allergy season

Sebastian is not feeling good, and he did not go to school today. My little guy is miserable a lot. I am considering cutting my hair short like last year, since he started grabbing it again. He is allergic to something inside, or maybe outside too - we live close to all kind of air polluters, steal, beer and soy products makers. Wind changes a lot, so maybe that has something to do with it. And fact that my house is 120 years old, sits on unfinished basement that was home to all kind of molds growing happily there for over a century is not helping either. I have dehumidifier running there all the time, but with every rain stone walls are getting wet. I know who could fix my problem. Mike Holmes could. He would come, fix my basement and put in air filters, the kind they have in hospitals, and we would live happily ever after.

Tuesday, October 13, 2009

At Queen's Park - day 61

Publish Post
Tanny came to visit Today from Kitchener. I was very happy to see her again. Her son Demarco is doing great in first grade after two years in Children's College. She was joking saying that she missed over 100 km drive to Toronto everyday.

Monday, October 12, 2009

What to do with crying boy on Thanksgiving morning


It took Sebastian an hour and half of tossing and turning before he fallen asleep on Saturday, so when he started crying at bed time on Sunday I thought it was just a more uncomfortable version of falling asleep from day before. He had a running nose and has been coughing a bit lately. I let him fuss and cry, and waited for him to quiet down and fall asleep. He quieted down but soon started to cry again, so I went to check on him. His eyes were puffed up and pink. It is past allergy season isn't it? I gave him some Benadryl, then eye drops, then more Benadryl, and then some kid's Motrin, and after an hour of screaming Sebastian fell asleep. He woke up around three in the morning with puffy pink eyes, screaming again. I gave him more antihistamine, and it took him an hour screaming before he fell asleep again. At six in the morning he was awake and screaming again. His eyes were not swollen, and he did not have a temperature, but he was shivering, and some rash had started to show up on his behind and thighs. I did not know what to do, so I took him to emergency. He vomited while we were waiting, and that was a good sign for me, becuse I new then that it was just a flu. We saw the doctor, who told me to give him lots of fluids. Sebastian vomited again on our way home, and was fine till now. I cooked some fresh chicken broth, and I try to keep him hydrated like the doctor advised.

It is one in the afternoon and he is screaming again.

Sunday, October 11, 2009

Improve autistic care: Quebec ombudsman

The Quebec Ombudsman investigated the situation of autistic children in that province, and came out with recommendations to improve their care. Here is the link to article about it.

The Ontario Ombudsman's reply to complaints of parents of Autistic kids was that he will "monitor" the situation. Here is link to his answer (pdf document)

Taline sent him the following message this morning:

Dear Mr. Marin:

I first wrote to you in February 2008, urging you to investigate the autism crisis in Ontario. Many families followed up by sending you stories of their children waiting for years on the waitlist for IBI (Intensive Behavioural Intervention) therapy, being prematurely cut off from the program without sufficient evidence-based cause, and not being able to access said therapy and school together, thereby being denied their fundamental right to an education.

Over the course of the year following this initial communication, I sent to your office numerous pieces of pertinent information and evidence in an attempt to assist you in your investigation. In the spring of this year, the autism community received notice that you would only “monitor” the situation.

In light of this week being Good Governance Week in Ontario, which you describe on your website as “a nationwide celebration of the role of ombudsmen in commemoration of the 200th anniversary of the first ombudsman, established in Sweden in 1809”, and also in light of the Quebec ombudsman’s decision to go beyond just monitoring the autism situation in Quebec (please see article below), I am asking that you provide me with an update on the status of your monitoring of the autism crisis in Ontario, which I will share with the autism community.

I look forward to your response, which I can only hope will be to the benefit of the thousands of children with autism in Ontario who are currently, and have been for many years, suffering due to the major stumbling blocks our government and school boards have created that prevent them from having their basic developmental needs met.

Taline Sagharian
We all wait impatiently for his response.

Saturday, October 10, 2009


It took me almost untill noon to cook soup and pancakes and get ready to go to Toronto. We went to the farmers' market on our way, and jumped on the Queen Elisabeth Way only to find ourselves stuck in traffic. I turned the radio on and found out that the Gardener was closed. It meant that it would take us hours just to get to downtown Toronto. I turned back home. We do not need to spend hours in traffic on our day off. We went to the Burlington Ikea instead. I bought a coffee/ tea maker or what is called a French coffee press. I have two--one for coffee and one for tea. I use them all the time since I do not have an electric coffee maker. This one is perfect for me. It's small, does not need paper filters and is perfect for making mint tea from freshly picked leaves from my yard.

Friday, October 9, 2009

Autism Matters Summer 2009 Edition


Some time ago somebody forwarded me a link with the summer edition of the Autism Ontario newsletter. It is posted here.
I scanned through it, then read it more thoroughly. I went to the Autism Ontario website and read their mission statement. Here is what I found:

Autism Ontario (formerly Autism Society Ontario) is the leading source of information and referral on autism and one of the largest collective voices representing the autism community. Members are connected through a volunteer network of Chapters throughout the Province of Ontario.

We are guided by a Board of Directors, composed primarily of parents of individuals with autism, plus a host of volunteers and respected professionals who provide expertise and guidance to the organization on a volunteer basis.

Autism Ontario is dedicated to increasing public awareness about autism and the day-to-day issues faced by individuals with autism, their families, and the professionals with whom they interact. The association and its chapters share common goals of providing information and education, supporting research, and advocating for programs and services for the autism community.

Autism Ontario is the biggest advocacy group and the first place parents of newly diagnosed kids with autism are referred to go to for help. How confusing it must be for those parents to read the newsletter and find nothing there that reflects their situation. There is no mention of the 3-4 year long waiting list for therapy; there is no mention of discharging kids after few months of finally receiving said therapy. Nor does the newsletter make mention of the thousands of children of all ages who need therapy and do not receive it. If this is advocating for autism in Ontario it is definitely a "soft touch" advocacy (soft on the Ontario government).

Ironically, the cover of the issue has the facade of the building I've got to know so well lately.

Thursday, October 8, 2009

Day at home.

Sebastian was bussed to school today, and I decided to stay home because I have a lot of house work to catch up on. I am a single parent after all. Nobody does my dishes. Or the rest of it.

Yesterday Sebastian wanted to spend all his time on my lap. That is new. Instead of running back and forth and chewing on a rubber toy, or twirling a string in his fingers, he would come, climb on my lap, or pull me to the couch to play "push" and tickling games.

Now he reaches for sauerkraut and eats it raw by the spoonfull. When we stick to the GAPS diet, his stool is brown and small in spite of him eating a lot of food, and that is quite in contrast to how it was for years when large quantities of undigested stinky mess was coming out of him everyday. I have to go slow with new foods in spite of my temptations, and do not give him too much fruit yet because he is reacting to it. It is great to see so much improvement. He is so much fun.

Wednesday, October 7, 2009

At Queen's Park - day 60

Today was the day the e-health scandal unraveled. I was listening to the transmission of a press conference live on the radio as I was coming from Queen's Park. So the heads rolled. The Minister of Health is not the Minister of Health anymore, and the Minister of Children and Social Services is now the Minister of Health. So we have a new Minister of Social Services. I wander if it is good or bad news for us.

Today is the biggest demonstration I have ever witnessed in the two months I have been coming here. Bus after bus was arriving, and people poured out on the green grass. Over a thousand Nortel pensioners came to make sure that their pensions will not disappear. Andrea Horvath is speaking as I am writing this. Flags are flapping on the wind.






Love story

When I came to Canada more than twenty years ago, it was April. In May I fell in love. The sun was bright, the air was fresh, spring was exploding with bright green leafs and colorful flowers, people were gentle and understanding. I had a lot to learn - a language, customs, ways of thinking, and I was happy and thrilled to do so. I went through my share of odd jobs. I payed my dues. I did not complain much. I was grateful.

When Sebastian was diagnosed, my world was turned up side down and inside out. But I still was thinking Canada is a good country, full of good people. And I have met many of them in my time of need.

When I started protesting I was still quite naive. Now I have been watching who is coming to Queen's Park to protest, how each group is treated by officials and media, and I can clearly identify the oppressed. The oppressors are hiding somewhere safely, behind their desks, and are using all their wits and position to bring themselves the most profit or power or both.

Like my friend told me, in this system the weak and undesirable are not being killed, they are being exploited or left to die instead. Or left without available therapy like autistic children or cancer patients. Or left without safe drinking water supplies on reserves. Children are dying and being abused while under the care of Children's Aid and nobody has paid any attention to the problem for decades - this is also Canada.

It hurts somehow.

Tuesday, October 6, 2009

Monday, October 5, 2009

At Queen's Park - day 58

Some days I learn more than others. I have never suspected I would learn so much from an Exposing Children's Aid Society protest. I am shocked. The stories I have heard were compelling and highly disturbing.

Children are dying while under the Children's Aid Society care. And life goes on. Documents remain confidential. Decisions are made behind close doors. Tax money keep pouring in. The media is not interested. Consistently, 90 children die a year, and how many were abused? How many are being abused right is this moment? How many families unnecessarily broken? It is disturbing.

Privately owned agencies that are self-regulating are given license and money to act on the government's behalf but lack accountability and transparency, and are abusing their powers. It is clear to me now. A scandal explodes from time to time; there is some scape goat found and punished (or not), and life goes on.

No media was present, but speeches were taped and will be posted on Youtube.

I will post links when I get them.

You can learn more from protectingcanadianchildren.ca website.