Monday, July 7, 2008

Feeling Like a Castaway: The Need to Build Community

Tommy started his current Montessori school as a "first year" in the Junior Elementary program (grades 1-3, in a mixed age classroom) in November of '04. Not long after he was in the classroom, maybe 6 weeks, he was asked to leave school for an indefinite amount of time because of his unacceptable behavior (see Getting the Diagnosis for more details). At this time we only knew we needed to get him support for his sensory issues; we did not know he was bipolar. But we knew something was clearly not right.

After I got the phone call mid-morning that December day I dreaded getting to school for fear of what state I would find him in, and who the casualties would be this time? Classmates, teachers, administrators - anyone could have been in his path. In those same moments I wanted time to stop, I could not drive the car fast enough to get there and take him away from everyone. The head of school sat me down and told me he had threatened to hit a boy over the head with a metal shovel, because the child tried to take it from him. She said it was a safety issue and he had to leave. But more importantly, because of several incidents in the last few weeks (including throwing books at a teacher's head), it was clear that Tommy was not a classic behavior problem and was asking for help. He could not come back to school until he had gotten that help and was stable. We were new in town, and I had no idea where to turn. I asked her for names, and she sheepishly gave me a short list of some psychologists, but said she could not personally vouch for any of them. (See Finding the Hard to Find Therapist for how this played out.) She also suggested looking at some other schools.

And off Tommy and I went, both of us with tears in our eyes. My husband out of town, all I had was a cell phone to cry into. I was alone and terrified, and my son no longer had a school to go to. But yet I had this uncomfortable connection to the school because my younger son, Will, was still there. I immediately concluded that I must be the only one at the school who did not have "normal" children. Tommy must have been the first ballistic child they had ever tried to deal with. Nothing was even vaguely said about other such incidents with other "not-normal" children. Not one therapist, clinic or resource was definitively pointed to. Who was going to help me help this child? And who could ever understand what I was going through?

Understandably, because of privacy concerns, schools are not willing to share names and information with you about other parents who have tackled similar problems. You only hear these things through the grapevine, and I did not have a grapevine at the time. No support group existed within the community, and if it did, they did not advertise themselves. God knows what people had heard or what they were saying about Tommy. No one approached me about it or offered any help. If he had broken his legs, or had been hospitalized with an appendicitis, no one would have been shy about asking me how he was or if they could bring by dinner, take Will for a playdate, etc. Many parents of Bipolar children (and children with a variety of special needs) live in secrecy while trying to make progress and help their children get stable. And even with Will still at the school, I felt completely shut off - a shunned member of Tommy's community. Like we were some sort of criminals.

Since I went to the school every day to drop off and pick up Will, I bravely went by Tommy's classroom on a regular basis and checked his parent mail box (which was a hanging file folder inside a file box). I tried to feel like I was still part of the classroom, because I knew in my heart that Tommy would be back. Yet the other parents and the teachers rarely spoke to me. I sensed some parents wanted to ask me where Tommy was but did not feel comfortable enough. He seemed to have something wrong with him that they considered unspeakable. One parent told me years later that she thought Tommy had just gone to another school. I really only got to speak to the teachers via the head of school, when I would schedule a progress meeting with them and Tommy's therapists.

One day, about a month and a half into his absence, I stopped by the classroom to pick up my parent mail. And something happened that stopped my heart and brought tears to my eyes. His parent folder was gone. They had removed it! What did this mean? Were they saying we were not worthy enough to know what was going on in the classroom? Not even worthy of a book club notice or a call for brownies for next Tuesday's bake sale? Or worse yet, much worse, were they trying to tell me they were never going to let Tommy back into the classroom? Was this their way of saying good bye forever? Hadn't they noticed that I was picking up the mail every day? I mean someone was emptying that folder. I felt more cut off and dejected than I had felt at any point during this whole terrible process. Yet, I felt like we somehow deserved it, and I was too embarrassed to ask exactly why they had removed it. Thinking about how I felt then still sends a wave a nausea through my stomach.

With three and a half years perspective, my guess is that they were just trying to save some paper. But people need to think about what kinds of messages small actions send to those in crisis. These actions definitely cause reactions in us. Conversely, a simple "are you guys hanging in there?" can lighten our day. We need support, and we need community. Things like Bipolar, Asperger's, Anxiety, Depression and OCD need not be naughty words. I would make the suggestion to anyone who is going through problems with a child, to tell your teachers, administrators and therapists that it is okay to give your name to other parents. Make sure to give your teachers and administrators all the names and numbers of Therapists and Doctors you have used, and your level of success with them. Start a support group, and make yourselves known.

Over the years I have dealt with this, I have finally connected with other parents who have special needs children (in the emotional and neurological sense), and it has made all the difference in the world. Those parents have built community by starting a support group and by speaking openly about their children's issues. Most all of the parents I have asked, have felt as alone and helpless, at one point, as I did that day they took the folder away. I am blessed to have finally come into a community.

Writer's Note: This post paints a dark picture of Tommy's removal from school. It was, in fact, a very dark time for me. Tommy was out of school this first year for a little over 3 months. I would like to note however that the school, we as a family, and our gifted therapists, have come a very long way in assimilating Tommy back into the school. Tommy has healed a great deal since then. I think the school has made tremendous progress in dealing with these types of challenging children and has tried to educate its teachers and make extraordinary accommodations. At this time, I would never send Tommy to any other school. My other postings more accurately describe how we got to the point we are at now.

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