A year ago, Kai had just finished his first month of kindergarten at our neighborhood school. He was in a mainstream classroom, which, at one time, was a dream for us. But, the reality was already starting to show that the dream was not going to turn out the way we hoped.
From my personal observation, I think that most parents of children on the autism spectrum want their kids to be mainstreamed in regular classrooms at their neighborhood schools alongside neurotypical peers. We certainly did.
“Least restrictive environment” is the battle cry often heard. It is our son’s right to be in a mainstream classroom, our thinking went. How will he ever learn to function in the real world if he is isolated from neurotypical peers and not allowed to attend a regular school? How will he learn to communicate and socialize with other children if he attends a “special” school full of kids like him who have trouble in that regard themselves?
I now realize that mainstreaming is not a panacea, and that it is not the best choice in all cases. Before we get to the reasons behind this change in thought, let’s backtrack a bit.
For the first year or two after Kai was diagnosed with autism, my wife and I never dreamed that he would ever be able to attend regular classes at our neighborhood school. After all, Kai did not speak or respond to anyone, and he had many behavioral issues.
But, as time went on and he improved in so many ways, we started to think more and more about the possibility that perhaps our son could be mainstreamed. Our behavioral therapists worked hard to prepare Kai for school. They drilled him in academics so he would not be behind the other kids. They practiced school routines like calendar time and lining up and raising your hand and taking turns.
Our lead therapist recommended that Kai attend a regular preschool as preparation for attending a mainstream kindergarten class. She found us a wonderful school that was very accepting and supportive of our son. With Mary accompanying him as his aide, Kai adjusted well to preschool and was able to function fairly well. As time went on, he was even able to attend a few days a week without Mary, who faded her support so that Kai would be more independent.
With his success in preschool, we began to hope that Kai might have a chance to be mainstreamed. We had the support and encouragement of all of his team of therapists, psychologists, and social workers. We braced ourselves for a fight with our local school officials who we thought would try to place Kai into a special school. When they agreed without a fight to allow Kai to attend our neighborhood school in a mainstream kindergarten class, it was a joyous day and quite a milestone in his road to recovery.
The joy of our son being allowed to go to a regular school, however, did not last long. On what seemed to be a daily basis, we got calls from the school about some incident that he had. He would hit himself or kick another student or try to bite a teacher. Often, this was precipitated by having to wait for something. Sometimes he protested having to do something.
The school attempted to make accommodations for him. An aide was assigned to him. He would enter and leave the building separately from his classmates to avoid the chaos in the hallway. He could ask for breaks and take timeouts in a different, quieter classroom. The school social worker worked tirelessly to develop social stories, brainstorm ideas on how to address issues, and work with him personally to try to teach him acceptable behavior.
There were some successes. His teacher said that Kai was well-liked by his classmates, and he liked them as well. He had some good days. But, all too often, his days were considered good when he had only a minor incident instead of a major one. His success or lack thereof was defined by his behavior, and not at all by academics. In terms of schoolwork, this kid, who everyone agreed was very bright, produced almost no actual work.
As the weeks went on, our stack of incident reports that the school sent home was growing into our own little War and Peace, minus the Peace part. It was taking a toll at home. Stress levels were high. We felt frustration with the school – they don’t know what they are doing! We felt frustration with our son – why did you hit/scream/bite/say mean words?! We felt frustration with each other.
Along with our own stress, we could tell that Kai was feeling anxious as well. While he could not fully express his feelings, I think he felt like a failure for not being able to stay in his classroom as he was taken to the class next door after each incident. He felt singled out for his behavior, one time asking Mom, “How come the other kids don’t go there when they do something bad?”
Over time, we got the notion that the school administrators and staff were stressing out as well. They seemed frustrated about being simply unable to effectively deal with Kai. It was apparent that most of them had little experience in dealing with kids like him, and that the school was not able to teach him, let alone get him to behave properly. The aide assigned to Kai even quietly admitted to us one day that she was not trained to work with kids like him.
A little past the halfway mark of the school year, the school suggested to us that things were not working out and that Kai should attend a different school. A part of us wanted to fight this – try harder! But, we were worn down by the constant stress. Perhaps we should try something different.
Along with officials from his school, we visited several schools that were candidates for placement. After the visits, we agreed on the choice – a public therapeutic day school in a nearby suburb that specializes in kids like our son. It would be a totally different environment for him.
Kai didn't have much of reaction when we first told him that he was changing schools. I wondered if he really understood what that meant. But, by his last day at his old school, it had sunk in. Despite all the difficulties he had there, it was still his school, and his friends, and he was going to miss them all. As he was leaving there for the last time, it was heart-wrenching to see him so unhappy as he shouted, "I'm so sad!" as he ran out the door crying.
Tomorrow: Attending a therapeutic day school
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