Saturday, September 26, 2009


When I woke up today the first thing I felt was dark naked despair.

It has been four years since Sebastian's diagnosis, and that event in itself was one of the most devastating experiences of my life. But what happened after that when I was looking for help for him has been similar to psychological torture. Mainstream doctors refuse to even make tests and treat. A whole whack of alternative practitioners give a lot of promises...but this is another chapter to write about some other time. Trying to pay for therapy by myself--the staggering bills, the mountain of debt growing higher and faster every day. Dealing with people at Chedoke (the local treatment facility -ed) ... my goodness, I could never get a straight answer from them from the beginning. Not about how long we will have to wait, not about how many other children were ahead of us on the waiting list. By a fluke we were waiting "only" two years, and after six months of funding I was told that if Sebastian will not make enough progress he will be discharged. I was afraid of my own mailbox. I did not like checking my messages when I got home. And finally it happened. I did get the letter, and another, and another, and another.

I am not afraid any more, but I am being pushed to my limits.

Now Sebastian is being pushed off therapy and into a school system. Because St. Lawrence School is going through major renovations, he will go to St. Bridget's. And Dr Reitzel - the discharge papers signer from Chedoke - suggests now that Sebastian should be transitioned over a period of time. So the awkward situation will be remedied: the wrong thing will be done the the right way, gently and gradually. Denying treatment to a child who desperately needs it will be spread over a few weeks: for the first six weeks, Sebastian will go to Children's College for three days a week, and two days a week he will go to St. Bridgett's. The next six weeks he will go two days to Children's College, and three days to St. Bridgett's. After that he will be in a regular school, at St. Bridgett's full time.

I think that if Sebastian was high functioning, he could definitely benefit from such a process. But Sebastian's place is not in regular school.

Now the negotiations will go on to make the school agree to observe Sebastian in his environment in Children's College. If we are lucky, Sebastian's future teaching assistant will have an opportunity to see Sebastian's therapy for few hours. They can not be taught therapy, since the school system is not allowed to provide therapy for students. Schools cannot hire private therapists, or clinical psychologists, because their purpose is to educate and not treat. Children like Sebastian can not learn by imitation like normally developing kids do. They need therapy to learn. But schools are not there to provide therapy - therefor kids like Sebastian do not belong in school. To put them in a regular school system that is not allowed to teach them is to deny them a basic human right - the right to education.

After the transition, the teaching assistant will be left to deal with Sebastian's "education" on their own, without the support of a senior therapist or clinical psychologist specialized in autism. They will be supervised by a teacher who's profession is to teach normally developing children. So it is clear to me that the school system does not have the structure in place that would be able to support the successfull education of children like Sebastian.

No matter how gently they will do the wrong thing, it is still wrong.

1 comment:

  1. this sounds very hopeless to me Maryna. I mean you probably know more ABA than the teaching assistant.