Conundrum

I spent the week trying to figure out whether or not I should take Marcus to a new colleague's house warming party. Here's the conundrum: Marcus is difficult to take anywhere, especially a place where there are desserts. But, he likes to go out and he should be able to do so. I feel like a horrible mother that I don't take him out places because it's so much hard work. I just wanted to go to the party and relax a bit. I went back and forth with yes he can go and no he can't. By the time Saturday came, I had decided I would take him. Morris works on Saturdays so my choice was to leave him home alone or take him. I just felt too guilty leaving him at home while I was at a party. Truth is though that I didn't want to take him. How terrible is that!? And selfish. Mothers are supposed to be selfless, right?

Morris ended up coming home for a few hours so I went to the party alone, promising to bring Marcus home a plate. I knew he really only wanted to go for the food and that he would be bouncing all over the place. I was glad I didn't take him in the end. There were two kids who came later and they sat nicely drawing while their parents enjoyed the party. NO WAY Marcus would have done that. To be honest, I was worried about being embarrassed. God that feels awful to write. Plus, I worry that people who know about Marcus's issues are afraid when he's around. That feels bad to write too.

Bad mother syndrome sucks.

A string of good days

Marcus has had a string of "good" days since we made the changes. Of course, he is still himself which means he still needs to get his tics out and pace, but he's been proud of himself. I'm proud of him too.

Traveling back a bit in school history ... seems like a good time to tell the kindergarten story. Marcus went to the Rochester City School District's School #1 for kindergarten. I spent a good deal of time that summer meeting with teachers to prepare them. I gave them the "Teaching the Tiger" book, handed out the NY State curriculum for people with Tourette, and told stories about what had happened and what could happen. Since Marcus has to do things that are forbidden, I told them that, for example, he would pull the fire alarm. They would need to be extra careful in hallways. Putting covers on the alarms would be a good idea. He is really fast, I told them. They never believe the mom. Maybe they think we are exaggerating or that we don't know the things they know, but they didn't really hear me. So, Marcus pulled the fire alarm during the first week. They suspended him.

I was back at the school meeting with them to remind them that I had told them he would pull the fire alarm. Make sure his one-to-one aide held his hand in the hallway. They didn't hear me ... he pulled the fire alarm again. They suspended him. When he came back other things started. He tore paper, he smeared soap in the bathroom, he ran off at recess, he cursed, he made weird noises, he had tantrums and hit other kids - all behaviors related to his Tourette. They called me everyday telling me to come get him.

Next I tried having the clinical psychologist from the Movement Disorder Clinic meet with them. She came every month to talk about Marcus and to give ideas for helping him at school. He pulled the fire alarm. They suspended him. Parents wrote a letter to the principal to have him removed from the school. That one hurt.

We tried every which way to get them to comply with his IEP, to have the one-to-one do the job, and to include him in the classroom. Their response was to move him into a closet. They pushed back the junk, put in a small desk with a toy and left him there with a paraprofessional. I can't even tell you how angry I was that they would so blatantly violate the law. I was at CSE so many times that year I finally ran out of a meeting in tears.

Needless to say, I got a lawyer. Meetings were different, but nothing changed at the school. They wanted him out and they made sure that would happen. He went to a BOCES school after that until fourth grade when he went to Crestwood. That school kicked him out too.