What am I going to do about it?

Yesterday I had two IEP meetings for my sons in their new Florida school. I met the director of the autism program, a very impressive woman from Massachusetts who has a doctorate in exceptional education. She said all the right things about the school’s program – they have a speech therapist who visits each class for 30 minutes per day, an occupational therapist on staff in the school, a computer lab and sensory room, and a “peer mediation” program that facilitates interaction between typically-developing kids and kids with autism. She assured me there is a strong focus on academics in addition to social and communication skills.

I asked about discipline because I became alarmed when a Google search yielded story after story of autistic children in Orange County (our county) being placed in excessive restraints. I was told they use a certain method (the acronym escapes me) but that they will never use prone restraints – that’s saved for the school’s safety officer if necessitated by a violent situation. That’s when I felt a huge pang of homesickness for our school in North Vancouver. Never, ever, in three years of IEP meetings, was the word ‘restraint’ used.

What you should understand about Robert is that he is not an aggressive kid. He can be a “runner” – he doesn’t have the kind of impulse control you’d expect from an 11 year old. It’s more like a very young child who sees something he wants and takes off in that direction. He doesn’t do it out of malice but because of interest. In this school environment, there is a very real possibility that Robert will be restrained to keep him in a certain place, even against his will. I’m no fool, I know that sometimes kids with autism must be prevented from hurting themselves and others. I know the school needs a formal process and safeguards in place to protect themselves from injury or litigation. But at some point during the conversation, for the first time in a long time, I worried that my son would be treated like a label instead of a child.

I asked about the other students in the school, their attitudes and interactions with the kids on the “autism wing”. The answer was telling. The peer mediation program provides the opportunity for students to “come back and spend time with” kids with autism. The peers receive special training which I think is great, but I don’t yet know the nature of the training. Apparently this privilege is reserved only for “gifted students” who can “afford to be pulled from a regular class.” It does not sound at all like an attempt to build reciprocal friendships but rather to provide some exposure to typically-developing peers. I have two kids with autism. I don’t know about you, but I would be intimidated as hell if I were a kid and went to a classroom full of kids with autism. That’s the beauty of inclusion. Robert was in a class of about 25 kids. Every child was encouraged to interact with him in a natural way. Some embraced it more than others which is completely understandable. But he made true friends. Friends he misses. Friends I miss!

But my favorite part was the comment that the teachers in the school “don’t mind” having the kids with autism in their classrooms for brief periods of time with a para-professional. How generous! And for teachers reading this, I respect your profession profoundly and I know how hard your job already is. I believe teachers make all the difference, even in the worst districts or worst schools. But the idea that we’re doing someone a big favor by allowing autistic children (or children with any disability) to participate in their school community has to stop!

So now the words of my friend and fellow parent of an autistic son, Heather McCracken, are echoing in my ears. When she lamented the lack of social programs and emphasis on true friendships for kids with autism in schools, she was asked, “Okay, Heather, what are you going to do about it?” Her response was to start an amazing organization called the Friend 2 Friend Social Learning Society. I had the opportunity to work with the group when we lived in Vancouver and saw first-hand the positive impact of de-mystifying autism, encouraging the acceptance of differences and fostering true, meaningful friendships. It looks like we’re in desperate need of that here in Florida.

So the question becomes, what am I going to do about it?

Peace.