Wednesday, October 21, 2009

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.

1 comment:

  1. I have a similar story but with profiteroles. They sold them everywhere in England, thank God I moved back to Canada.

    However I have developed this new habit - most modern day people would call it a very bad habit. I think of the future less and less, almost as if I have no right to think or plan for the future. I am only planning as far as the weekend and it is Wednesday. Obsession with future = lousy present (and you don't even have to have an autistic child to fit that equation).

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