This was advice from Dr. L. He seemed to know right away how sick Max was, how unlike other kids he was. Dr. L. was horrified that we were sending Max to the local Jewish day school. He knew about their history, and was unmoved when I told him about my conversation with the new headmaster. "It isn't going to work," he said, "they are going to extrude him over a long and painful process."
He meant that no one would actually expel our child, they'd just make things so miserable that it became impossible for Max to stay. We really believed that the school wanted to work with us. We had thoroughly explained the issues as we understood them. They told us they would help Max. They had new reading specialists, they said, to help with some of Max's learning needs, and they understood that Max was unable to read social signs. They'd help him, they told us.
Max was really falling apart at home more than at school. His medications needed constant adjustment. The med that got adjusted the most was Seroquel, another of the atypical anti-psychotics. It has an incredibly wide dosing range. Doses start at 50 milligrams per day, and it can be dosed up to 800 milligrams. At fifty mg, most kids are sleepy, so we knew that Max would fall asleep easily at night. Having a definite end to the day almost made the pain bearable, but in November, Max was violent at home every day.
He had been discharged from Prospects, and we didn't have a new psychiatrist yet. We were, as always, on our own. That's another thing that Dr. L. had told us. "No matter what happens," he said, "you guys will always be alone in this". The guy was uncannily, always correct. Max was starting to fit into a strange, predictable pattern. His moods would cycle every day. This is known ass rapid or ultradian cycling, and it far more common in children that in adults. Every morning, at 7 AM, Max became manic. He was irritable, silly, would throw things, including food. He had echolalia, where he would repeat something he heard us say, or something on TV. Or he would clang, repeating something he heard, plus strange variants or related words. So, if Little Einsteins said, "let's go, Rocket!", Max would then say "Rocket, shmocket, in my pocket, what's in my pocket, look a car, it's red, boom!" and throw it across the room at me, often just missing my face, but sometimes hitting me in the forehead if I didn't duck quickly enough.
He'd often calm down just enough for me to get him to school, then get Henry there, and then I'd come home, exhausted, to make several rounds of phone calls looking for help for my son. I'd call psychiatrists, read the CABF website (bpkids.org) desperately looking for help. I was in contact with Dr. L., even though he wasn't really our doctor anymore. I'd pick Max up at 3:30, which was good, because part of the new pattern was depression every day at 4 PM. Max was miserable, hateful, angry, and sad. He hated us, himself, he said he was worthless, and we were even worse. Again, this was accompanied by violence towards us and his brother. It was difficult to keep anyone safe. We were lucky that we had Caitlin.
Caitlin was our babysitter. She was in her 20s, and lived around the corner with her mom and step-dad while finishing her college degree in education. She had started helping us with the kids around when Henry was born, so she'd seen this all develop. She knew it wasn't a parenting problem long before the doctors knew. She came three afternoons a week as my extra pair of hands. I never left her alone with both kids. I knew no one could really handle Max other than me or Dave, but I don't think I could have survived without Caitlin. She could take Henry outside or to his room to play. She helped keep us safe. She could also put Henry to bed while I wrangled Max.
If I could get Max to fall asleep before 6:30, the evening was OK. It meant an early dinner, a strict routine (demanded by Max) of last television shows and medications, sometimes even a shower. but if I didn't get him to sleep before 6:30, we were all in trouble. I sometimes missed that sweet spot, which meant another round of mania at 7 PM. Some friends made fun of us; they couldn't believe how we kowtowed to our son's sleep schedule. But we thought of it as a safety schedule. As things got worse, though, we were unable to control anything; I was forced to use the therapeutic restraint skills I'd learned when working in group homes in my twenties. Dr. L had also showed me how to restrain Max be bending his thumb back and inflicting pain without harm. I never wanted to do that, but had to once when Max said he was going to break Henry's arm.
I called Dr. L and begged for help. He said, "I really don't want to hospitalize him", which, in shrink speak, actually means "I want to hospitalize him". So, we did it. The day after Thanksgiving, we couldn't take it anymore, couldn't keep everyone safe. We talked to Max about it, and he thought it was a great idea. he packed his own bag for the hospital, at five years old. Dr. L. thought this was meaningful, that Max knew he was out of control and wanted help. So we took him to the emergency room at Yale- New Haven Hospital.
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