They grow up. They become adults. And they still have autism. Our son, Brandon, will always have a diagnosis of autism. His age will not change that. Next year will be his last year in school. Brandon can stay in school until he is 21. Thankfully, they don’t kick him out on his birthday. He can finish the school year.
Brandon’s experience with school is nothing like our other sons experience. Where did we start? How in the world is it that next year is his last year? It has flown by.
Where did we start?
Brandon started kindergarten at one of our public elementary schools. But not the one that is about 200 yards from our house. This is where our other sons went to elementary school. Brandon, however, had to go to a school that is 4 miles from our home. And that’s four miles as the crow flies. It can be a 15-20 minute drive, depending on traffic. Why did he have to go to a different school that his brothers? Because, at that time, Brandon’s school was the only one that could support kids with autism.
While at this school, Brandon was “main streamed” in different classes, but always with a paraprofessional, which is a much better title than “aide”. The paras work hard with our kids every day. At first, he was in a “regular” music class, art class, and PE class. They pulled him from art class when he was in first grade. At the beginning of second grade, they pulled him from the music class because he was becoming a “disruption”. He would stand up and dance around the room. They told us he wasn’t learning anything. At his IEP during second grade, they announced they were now pulling Brandon from PE. The reason for this? Brandon doesn’t understand the rules of the games and would not participate. Isn’t it their job to teach the kids the rules to the game in a way they can understand?
So here we were. He was no longer being mainstreamed into any classes. He had to stay in his little classroom with 7-8 other kids his age who also had disabilities. Therapists came into the room to do their therapies. I asked why there wasn’t a separate area where this could be done one on one. I was told it just wasn’t possible.
There was also no real schedule for Brandon’s therapies. The therapists would “push in” the classroom when they had time. Some weeks, the OT would come on Tuesday and Wednesday, the next week, it could be Monday and Friday. My son likes routine and they were not able to make a schedule with the therapists. If Brandon was in the middle of something and the therapist walked in the room, Brandon had to stop what he was doing to meet with her. It was like the classroom was being controlled by the therapists schedules.
What do we do now?
Steve and I knew there were self contained schools for children with developmental disabilities in our public school system. All of the students have developmental disabilities. We also knew there was (and still is) controversy about sending a child with disabilities to these self contained schools. When we brought the subject of sending Brandon to the self contained school with the IEP team, they seemed a bit shocked. Why would we do that? He is doing well here. Why would you not want him to be with the “normal” kids?
At that point, I may have used my very stern voice to remind all of them that Brandon was not with the “normal” kids. That he was in a small classroom all day long with no real exposure to the “normal” kids. Every class they were mainstreaming him into was no longer an option. Their response was that Brandon eats lunch with the other kids his age. That was it. That was their answer. Steve and I were angry, confused, hurt, and sad.
We requested he be transferred to the self contained school. I sometimes wonder if they didn’t approve the move just to get rid of me. LOL!
Brandon started his new school at the beginning of third grade. The difference was like night and day. There were schedules for therapists, there were private rooms for therapists, there was more than one para, there was a playground that was adapted so all the kids could play. They were not only teaching Brandon the typical curriculum of math, science, and reading, they were also teaching life skills. They worked with him on handwashing, toothbrushing (which he still doesn’t do independently and he hates it), how to eat lunch without taking something off of someone else’s plate, and on and on.
They are interested in what was going on at home. There was (and still is) a lot of communication between us and the folks at school. They understand that a less than stellar day at school may affect our evening at home. And we let them know if Brandon had a bad morning, so they are prepared when he arrived. That didn’t happen before.
Brandon attended this school through eighth grade. Then he went to high school! It is a self contained high school and Brandon loves it! He has flourished and has learned so many new skills. I remember sitting in his IEP meeting and his teacher telling me that Brandon likes vacuuming the floor. Hmmm…how can I make that work for me here at home? Nope, no interest in doing that at home. But he will help me with laundry, which they work on with him at school. He will also help with dishes and he also does this at school. That type of skill building is not done at our local high school.
While there have been challenges along the way, we have been so very happy with our choice. And Brandon is, too. I received criticism from some who feel that our decision was isolating for Brandon and how could we do something so cruel. I was told that I could no longer call myself an advocate for those with autism if I didn’t understand the need for mainstreaming.
I try not judge the choices other parents of children with disabilities make. I am not living their life. I do not know their child as well as I know my own. I am neither pro or anti mainstreaming. We are doing what is right for OUR child. And our decision is what was right for our child.