First day of school

Here is an email I just wrote to Marcus's school. They are transitioning to a full inclusion model, which I totally support, but have a ton of questions about for my child. I was up all night worrying...

I am writing as a mom today. As the first day of school approaches, I am up at night wondering about my son’s transition to general ed. As you know, I fully believe in inclusion, but am really struggling to understand the support model. I’ve listened carefully to explanations, but still don’t fully understand what it means for Marcus specifically. I have a ton of questions that I’ll just list in sort of a stream of consciousness way, so please bear with me.

What does support actually mean? I know there will be “more support”, even more than before. But I don’t know what “support" means. I have a sense of what it means for academic support, but what about behavioral? How will each of his 10 teachers learn about Tourette Syndrome and all its complexities? Will they know that Marcus has to pace, needs frequent breaks? Will they all read his IEP? People with Tourette’s have what the literature calls “rages” and Marcus does have these. We do everything possible to avoid them. How will teachers learn this? If he crosses that line, people get hurt and property gets damaged, which has led to him getting arrested. Our clear goals (there are only two right now), and why my husband stopped working so he can be in the school while we transition from residential placement, are no arrests and a high school diploma. How are we going to reach those goals in a support model? 

Last year, we had regular meetings with his teachers where we taught about Tourette’s. The vocal and motor tics, movement, disinhibition, impulsivity, rages, touching, etc. Marcus has severe Tourette’s which means he has all of these things, including the corollary diagnoses of ADHD and OCD. People unfamiliar with Tourette’s always think he is doing these on purpose, then punish him. Punishment doesn’t work. Teachers showed his classmates a video I gave (the school psychologist has it now) to peers so they knew about his involuntary noises and movements. The film, “I have Tourette’s but Tourette’s doesn’t have me”, shows kids talking to kids about Tourette’s. Marcus was actually in it. It’s an HBO production. Pacing can be an issue for teachers, but Marcus MUST pace; it’s a release of tension where he can also tic. The code of conduct rules would make this a problem. How will the support model assure us that Marcus will not be punished for pacing and that teachers will know this? We also work very hard to avoid rages and their triggers. This means that Marcus sometimes just goes home if he is overwhelmed. It was part of his safety plan, yet it was still counted as an unexcused absence. We had to try several times to get these unexcused absences removed because leaving is part of his safety plan. How will we make sure this continues to happen? What about if he touches someone (a tic), or makes weird noises (also a tic). See the attached NYSED document for a list of tics (table 1, p. 4), all of which Marcus has done at some point. I couldn’t see how these behaviors will be accounted for in the new code of conduct. 

I’ve attached literature I always give to teachers and support people so they can know about Tourette’s, including the official NYSED training manual. Please note the stressors on page 6 - most of which are happening in the next few months. I have a book called “Teaching the Tiger” that I believe was ordered for the building last year. If we can’t find it, I’m happy to lend my copy again. Kathy Giordano, the person who wrote most of this work for TSA, is in Rochester at the Advocacy Center. She has come to our schools before to teach people. The Tourette Syndrome Association is a huge resource and it has a lot of resources for teachers. Here is their website: http://www.tsa-usa.org 

Sorry to be a worry-wart, but you can’t know how terrifying it is for me to see Marcus in handcuffs. As a mother of a young black man in today’s lethal environment, I can’t express how dealings with police frighten me. 

I’m happy to meet to talk if that is a better way to help me understand how this will all work.

Thanks,

Joanne