Wednesday, August 13, 2008

Listen Up!

When my mother was getting me ready to return to school in the fall, the biggest question was "what will I wear on the first day?" There was a lot of excitement around buying new school clothes and picking out just the right outfit. It seems to me, all of that nervous energy about making this new transition and embarking on the unknown was entirely redirected into my outfit. The nervousness at bedtime was transformed from a feeling of discomfort to a feeling of anticipation as long as that new, hip outfit was laid out neatly on the spare bed, ready to hop into in the morning.

When it comes to Tommy and his return to school each fall, clothes are the very least of my concerns. I'd give anything if a trip to Macy's would alleviate the anxiety associated with the beginning of each school year. Tommy does not go to camp in the summer. We have tried several, but he has always freaked out, and in one case, ran away off campus onto a busy street. After I got "the phone call," I rushed over to find him being held down by 2 security guards. By the time we could go through the adjustment period, camp would be over. And we have no camps for special needs kids here in NM. So, after being home with me all summer, the thought of school is both comforting and terrifying. He craves the structure and routine that school provides, but he revels in the security and lack of effort being at home with me affords.

Last year he had a particularly difficult time returning to his school. In Montessori, children are grouped in multi-aged classrooms (grades 1-3 and 4-6). Last fall he entered 4th grade, which meant he moved from the "Jr. El" to the "Sr. El". This meant he had a new teacher and a new classroom. Also, they combine all the kids in Sr. El into one, larger classroom (there are two classrooms in Jr. El). The larger room, the increased number of kids and the new teacher, with whom he had not yet developed a rapport, were too much for him. Tommy has never been able to play completely by the rules. We have always had to make modifications to his daily routine, that differ somewhat from the rest of the class, until we get just the right balance of demands so he can handle the stress of the day. In public school, I believe this is taken care of via an IEP, which is something we do not have in private school. Parents, teachers and therapists come to an agreement on their own and see if it works; it is much less formal, but no less important to your child's success.

The first road block we hit was "composition". Tommy was used to having a free choice work period in the morning, and composition is (or at least was) near the bottom of his list. His history with dysgraphia and language processing disabilities made it an unpopular choice. So, not only did everyone have to do the same thing at the same time, but it was something he was afraid of. Monthly research reports were now also required. Again, a scary thing for Tommy. Another thing that complicated the logistics of all of this was that the teacher that was supposed to lead the class had a recurrence of breast cancer, and another teacher was put in as lead, with really no notice to the parents. This made planning ahead over the summer very difficult.

Tommy quickly refused to go to school and became depressed. He seemed to unable to find fun or joy in anything. Through a series of questions at home and in therapy, he finally revealed it was the composition and monthly reports that were at the root of his non-compliance. We met with his teacher, got him excused from those assignments, and set goals to incorporate them into his work day as time went on. Also, Tommy does a language arts lab for tutoring, and he would certainly make progress in those areas through this vehicle. This got him into the classroom without a major scene and/or a phone call by lunch time.

Surprisingly to me, my husband and everyone else involved, this only helped for the better part of a week. Soon Tommy refused to go to school again. There was nothing I could do to get him to go into the classroom in the morning. We offered positive incentives, and nothing was appealing enough to get him to step foot in there. The only thing he was willing to do was join his former teacher, Miss Inga, and her class for their morning wake up PE exercises, which included some Yoga and Tai Chi. He did this once and was able to go into his new classroom and get through the day.

Seems like we found the answer, no? No. His new teacher refused to let him go to Miss Inga's PE. She said Tommy could not miss morning meeting. He was a member of the community and he had to be there for the morning circle. In morning meeting, they would go over their planners, hear about new science lessons for the week and discuss social issues that had come up. She was adamant about it, and so was his Behavior Therapist, Nathan. Nathan felt strongly that Tommy was terrified of the social structure and pressure of the morning meeting circle, and that he must overcome it. We were unsure, but felt that at some point Tommy needed to just do what was asked of him and maybe this was a good place to start.

Nathan and I came up with a disincentive plan. For every hour that he was supposed to be in school, we would work in the community. We would go to parks and pick up trash, gather things to donate to the poor, and work around the house. He scrubbed bathrooms, dusted furniture and vacuumed. We made sure no fun was had during school hours. Though the parks and empty lots around our house were glistening, he was still depressed, still refused to go to school and still cried himself to sleep at night. He just kept telling me that if only he could go to Inga's morning PE, and then go into his new class, he could do it. He even told me I had to find a new school for him. He demanded we go for a tour of the public school up the street. He didn't like the public school, but he still refused to go back to his Montessori school.

We came up with a plan to get to school extra early and do our own PE. People would come strolling in from the parking lot and see us doing Tai Chi moves on the playground. He enjoyed this to some extent, but when 8:15 came and it was time to go up to class, he still could not do it. And off we would go, to beautify another playground.

I was confused and distraught. I knew I could not home school him (I have tried that before, and I am really bad at it), and I was taking the advice of the teacher and the therapist seriously. What I now realize is that I was putting more faith in the professionals than I was in my own child, a mistake parents of mentally ill children can easily make. The professionals have the experience; they make a living passing judgments on these kinds of situations. And many children do not know what is best for them, let alone ones with disorders. But think about it: who's been getting all the therapy all these years? Who's been asked to hone and practice his skills? Who's on meds to stabilize his rational thinking? And who's had every mistake he's ever made read back to him with constructive feedback? Tommy, of course (
and perhaps your child). In our attempt to treat Tommy, we have created an incredibly self-aware child, who makes every honest attempt to self-regulate himself when he can. We have asked him to carry the burden of his disease, something most people do not have to do until adulthood. Something the majority of people never have to do. Yet, no one was listening to this child when he was telling us what he needed.

My husband finally said enough - Tommy is telling us what he needs (and isn't this something we have been trying to get him to do for years?) and no-one is paying attention! I told his teacher that "for whatever reason, Tommy is terrified to go into the classroom and sit in that morning circle. So terrified that he will pick up other people's trash all day instead, and that he will go look at other schools when this one has been his home for 3 years. They offered Tommy a spot in that class, which implies that they can serve and accommodate him. Right now that accommodation needs to include going to Inga's morning PE and missing morning meeting." I insisted that if she could not do that, it was an issue for the head of school and the board, because it involved our contract and issues of finance. The next day Tommy was back in school, getting that sense of security and safety he needed from his former teacher's wake-up morning PE. After PE he would go directly to class and have a productive day.

Nathan realized at once that this is what needed to be done and that he was not seeing the whole picture. In fact, Nathan is the one who helped us get to this point! It is with of his guidance that Tommy's self-awareness is so finely tuned. We did, however, at Nathan's suggestion, set a goal to check in with Tommy once a month as to whether or not he really still needed Inga's PE. For a couple of months he insisted he did, and we did not argue. Then, one day in January, as we were walking towards Inga's classroom, he looked at me and said "I think I should just go straight to class. I don't think I need Inga anymore." My eyes welled up with tears and we changed direction. I tried not to make a big deal of it, just say "okay Tommy, whatever you think you need." To this day he has still not be able to verbalize what terrified him, just that we was, in fact, terrified.

I think Nathan and the teacher learned a great lesson here - I know I did. Listen to your child. Take the fact that you have been teaching him to understand and verbalize his needs quite seriously. When your bipolar baby stops hitting people, threatening everyone he sees, throwing books at teacher's heads, braking valuables, spitting in other kid's hair, and hurling furniture, maybe it's because he knows how to use his words now. Respect him enough to listen - you've both earned it.

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