The dread meeting with teachers

Today's story is about the day the pre-school teachers called me in for a meeting to talk about what was "wrong" with Marcus. It's a story I tell my pre-service teachers as an example of what never to do! I know the teachers and pre-school staff were well intentioned, but it counts as one of the most hurtful school experiences I’ve had with Marcus.

He was attending a Head Start pre-school, after just having left a school where the teacher hit him (but that’s another episode). The director was a friend of mine who had developed an innovative early childhood science program that Marcus really liked. We had been struggling with some of his behavior and since we did not have his diagnosis yet, it was a quandary as to why he was behaving this way. He was aggressive to other kids, often refused to participate in activities, and was doing a kind of walk-drop to the floor thing. He would also drop and pick up an object repeatedly. On the positive side, he was the king of the dress up area. His imagination is extraordinary and the scenes he would set up kept kids playing for a long time. He was bossy, though, and sometimes his aggression would scare people off.

So the day in question, I was called to school for a “meeting” about Marcus. I walked into the classroom to what felt like a dozen adults arranged in a semi-circle on one side of the room facing an empty chair on the other side. That one was for me. I felt like I was in a spy movie and this was my interrogation room. I sat down. I remember my friend saying something like, “there is something wrong with Marcus”. My heart sank. They proceeded to list all the issues and the things they thought were wrong. Evidently they had “tested” him and they believed he had a pragmatic language disorder. What?! Had they spoken to him? They went on to say that they were concerned for his safety since he developed the walk-drop to the floor thing. Maybe he had epilepsy? What?! My mind was reeling and my anger rose. I don’t remember now what I said in response but I do remember crying. I know they loved Marcus and were only trying to help but that didn't stop me from feeling horrible.

I left really upset. Was there something wrong with Marcus? Why was he doing these things? I immediately set about getting an appointment with a child neurologist and searching the web for information about epilepsy. I read over the symptoms and some made sense but I still wasn’t seeing Marcus. I don’t remember how I found the Tourette’s page but there it was. Tic disorder…motor and vocal tics…hitting, jumping, tearing paper, snorting…there he was.

Finally telling the story

This blog is a long time in coming. I have a thirteen year old son with severe Tourette Syndrome, OCD, and ADHD. Turns out my husband has the same thing. Life has been an adventure since we learned this diagnosis when Marcus was 4. I want to tell the story from the start while also describing the current goings on in our everyday life. Everyday there is something. Usually something big. I have a book in here somewhere, but in the meantime I want to tell the story in segments that get at the history and the present of life with my beloved child Marcus.

I want you to know first off that Marcus is amazing. He is smarter than hell, funny, and sweet of heart. You can't help but like him. Good thing because life with Marcus is work. And this is an understatement. If you are a parent of a child like this, you know exactly what I mean. No one else quite gets it.

So here is the first story, what we call the "hole boom" story in our house. It happened one day when Marcus was about 18 months old, before the diagnosis:

I don’t get sick often and usually when I do, like most mothers, I work through it. This time though, I was down for the count. I had a 102 degree fever and all I wanted to do was go to sleep. I took a Tylenol and went to bed. It was a blessing that I slept solidly because when I woke up and heard what happened, I was terrified.

Marcus was downstairs with Morris, Eric, and Anna when I went to bed. He was only 18 months old so we had the living/dining room area “baby proofed”, or so we thought. He ended up breaking all the safety stuff, but that’s not the story I am telling now. A confluence of events happened: Anna went upstairs to her room and Morris went to take a shower, leaving Eric and Marcus in the living room. Eric had to go to the bathroom and went into the downstairs half bath. He might have been there for one minute. In that time, Marcus went over to the cast iron grate in the dining room, picked it up and jumped in, falling eight feet to the basement floor wedging himself between the freezer and the wall. Eric heard terrifying screaming and ran to the basement. He couldn’t do anything. In the meantime, Morris was out of the shower and upon hearing the screaming, he went downstairs. He met a crying Eric coming up from the basement saying, “Marcus is dying!” Morris found Marcus behind the freezer. Marcus stopped crying and thrust his arm out asking to get out. The miracle was that he was unharmed. There was a small tear in his shirt having grazed the huge upward facing spikes on the back of the freezer. Later he developed a bruise on his buttock where he must have bounced off the floor.

When I woke up and heard the story, I panicked. Oh my god! He could have died in a hundred different ways. What if he fell headfirst? What if he had gotten impaled on the freezer? I ran through a myriad of scenarios and cried. It was a miracle he wasn’t hurt. We had no idea at the time what was in store for us.

A few weeks later I was talking to my friend and mentor, Elinor Ochs, about a few things and related the story to her. Because she is a language researcher, I wanted to tell her that Marcus’s first two word sentence was “hole boom.” She responded, “Oh a narrative!” When I told her his first three word sentence was “hole danger boom”, she replied that he had a moral stance. If you are not a language researcher, this might not seem funny, but it made me laugh, settling my constant worry about what might have happened.