The grief of childhood mental illness
It is not easy living with Bipolar. I hate it. I hate knowing I’ll be on medication the rest of my life. I hate having to constantly worry about insurance, especially as a starving student. I hate that at any time my medication could stop working because the chemicals in my body have changed… It is like knowing I’ll be on a roller coaster for the rest of my life, and wondering when the next up or down hill will be.
But that doesn’t hold a candle to having children with the same or similar illness. Of my 4 children, 3 have been diagnosed with bipolar, ADD, Anxiety, depression, and schizo-affective disorder (originally schizophrenia). One of them is old enough that they don’t believe the diagnosis of bipolar, and have been doing without medication for 2 years. Ironically, other than some chronic depression, she does ok. According to docs, she may never have symptoms again, or it may come back with a vengence later on. The 13 year old has been diagnosed with bipolar, ADD and anxiety, but his doc thinks that perhaps he was misdiagnosed 2 years ago and perhaps just has ADD (the anxiety and rage being pieces of it). However, both of them worry me less than my 8 year old.
He was originally diagnosed as schizophrenic, in spite of the fact that his psychosis was the only symptom. None of the other symptoms fit. He is bright, artistic, and social. He has friends, he joins readily into activities, and rather than decreasing in his intellectual capacity, is instead catching up and doing well in school. His original problems manifested in visual and auditory hallucinations (”The King”) who told him that he was bad, and all sorts of other things, including that he should kill himself. Eventually, he was told he needed to hurt others when he was angry which was when I found out. Apparently, since he was so young, it was clear that the hallucinations had been present for him for a long time, but we had just assumed they were him playing/pretending.
When we finally realized that he did indeed have serious mental health problems, he was put on Zyprexa. He stayed on that for 9 months, and while all psychosis went away, he gained weight horribly. Finally last December we made the decision to try other medications. We went through 3 months of hell while the medications we tried didn’t work and he got worse again. He regressed in school terribly, he had nightmares, and he became very socially withdrawn. Finally, abilify (the 3rd medication tried) started to work after 4 weeks.
As anyone with an illness like this knows, meds take sometimes days, but most times weeks to start to work. You generally have to stop the previous med when starting the new one, which means there is a time period in which you simply wait to see if the med ever works, while your mental health declines. I was ready to put Mark back on Zyprexa in spite of the weight gain and diabetes risk because he was getting so bad when the Abilify started to work. He’s been on it for about 8 months and it seemed that things were going really well.
But in the last couple months there have been ups and downs. For a while over the summer, he again regressed emotionally. Then he seemed to recover with the start of school, and do really well. He broke his ankle and things were a little tough on him, but he bounced back again and seemed to do well. Then after the divorce he again started to regress emotionally. He has been more of an emotional level of 5-6 years (instead of almost 9) and while school is still going well, he is very needy of my attention, is frustrated easily, has hard time with consequences and understanding them, and in general has had a difficult time. Of course, like any of us he has bad days and good days, and so it is sort of just a matter of tracking a trend.
Well over the last month or so he has also started to become a bit obsessive about God. Praying to god, making weird gestures and hand movements, almost dancing, composing songs, and being adament that he must pray for help, to be good, to be a good ninja (the list continues). He has also increasingly expressed that he hates himself, that he is no good, and apparently expressed the desire to kill himself (this I learned tonight from my older son - he hadn’t told me about it). Today I couldn’t take it anymore when I saw that he was in our hallway, on his knees, with a cross made from pipe cleaners clutched between his hands looking up at the ceiling and mumbling words. It would appear that things are getting worse again. And I just want to break down and cry.
Dealing with my own ups and downs is hard enough. This is a nightmare. I found myself earlier today grilling him on the whole God thing. That is hard for me because not only am I wiccan but I’m actively Unitarian Universalist. He doesn’t get any of the god stuff from me or church. I tried to talk a little about what it is we do believe, struggling with the need to figure out where illness stops, and natural spirituality is starting (which I would never dream of squelching whatever form it takes - well maybe I would keep him to being born only once…). I knew in my heart that my angry way of trying to root out what was going on was not helping, but at the same time I felt so helpless and overwhelmed I just didn’t know what else to do. Since then he has laid on the group dejectly saying he doesn’t believe in God, tearing down a poster in his room because *I* don’t believe in God (I do, just not as the Christian God). I will obviously be calling his doc and counselor tomorrow but I’m at wits end right at the moment.
It’s times like these that make life feel so unfair. He is such a beautiful, talented, and intelligent boy. He builds things out of legos and Connectx that I couldn’t even begin to imagine (I swear he’s going to be a ship designer someday - hopefully of space ships), understands math and science instintively and has the biggest heart in the world. He is sensitive and caring, and in spite of a problem with communication (both verbally since he has a severe speech impediment and cognitively - it seems that that part of his brain just doesn’t function as quickly as most of us) he is well loved by all who are around him. Right now… Life sucks.
