As I was thinking about yesterday, I was trying to think of a word I am not sure exists. What word could describe a feeling that the word "stress" doesn't seem to cover? What word is there for a day that felt like more than the mind was designed to take? I am not sure. But I know if such a word did exist, that many of my fellow autism parents would like to use it, because I know I'm not alone. We deal with uber-stress on a regular basis. We all have our ways of dealing with it. I will write about my day, because other options that start to seem desirable, like hard core adult beverage time or getting in my car and driving thousands of miles away are probably not productive.
The day started with Janey getting on the bus. She seemed happy enough. However, as soon as the bus got to the school, her bus aide called to say she had had a very, very tough time during the ride. She bit herself, hit him, got on the floor of the bus, screamed---all of her routine when she is completely out of control. He was shaken, and made the suggestion "Maybe she needs to go back to the hospital?" I don't blame him for having that thought. I called her teacher, to see if I needed to go get her, and the teacher called back to say she was okay at that moment, and indeed, she made it through the day, with a few screaming periods, but she made it. Needless to say, however, I spent the whole time she was at school on tenterhooks, waiting for a call that things had gone badly south.
After school, we had an appointment with Janey's psychiatrist. This was the appointment that Bradley Hospital made as a followup. They had said it was for the day after we got home, but something got messed up along the way, and it was actually a week after we came home. When checking in for the appointment, I happily took out our brand new MassHealth card, the card that I had thought Janey qualified by means of being disabled, the card that would help us with co-pays and therapies and from many of the stories of hype I'd heard about it, would basically open a world of help up. I had always resisted getting this card. Partly it was that I didn't want to ask for help, but partly it was because I have a huge fear of bureaucracy. But I was reassured it was a GREAT thing to apply for, nothing but good, and when the card arrived, I allowed myself to feel hopeful.
Well, the staff tried to add the card to Janey's record. They made some calls and then looked at me with huge alarm. I didn't totally understand what they were saying, but basically they said the card was for PRIMARY insurance, not SECONDARY, which seemed to make a huge difference. We already have primary insurance for Janey, our family Blue Cross, and this state insurance was supposed to be a supplement, but from what they were telling me, it had been processed somehow as "family assistance" and that meant we had two primary insurances for her, which from the looks on their faces, was a Very Bad Thing. They said I needed to immediately call the number on the card and get everything straightened out, or Very Bad Things would happen.
So I went into Janey's appointment feeling terrified about that. I think the psychiatrist could see we were at the end of some very long rope. He asked how Janey's behavior was since coming home from the hospital, and we basically said it was pretty much no better. We wound up discussing a new medication, the long considered "mood stabilizer" I won't get into the whole ins and outs of it, but basically there seems to be quite a bit of conflict in the psychological world about what would usually be termed bi-polar disorder, and whether it possibly might be something Janey might have. I am not up to thinking about all the debate, but I will say it's long seemed like Janey has manic times and depressed times. At this point, we are ready to try something new. How she is right now is not a way I would want her to have to live long term. So---we will be trying this new medication. It will require careful monitoring at first, and I have to say at this point my hope levels aren't great, but we will try it.
So---after all that fun in the day---a breakdown on the bus, a huge insurance snafu and a new possible diagnosis for Janey of a major psychiatric disorder---I thought I would cap off the day with trying to call the Mass Health people. Of course, there was a half hour hold, and of course, once I got someone, and again was on and off hold for half an hour, the phone somehow got hung up. I was on the cell phone, and I don't know if it was me or him. But that truly did add a needed final touch to my day of the word beyond stress.
All that was left was Janey screaming a lot at night off and on, and hitting me hard a few times. She fell asleep about eight. Tony had been out getting William home from college. The day ended listening to my two amazing boys joking around and discussing world events. I was able to fall asleep by pushing aside until today the day's worries. I listened to them talk as I drifted off. Even the toughest day has moments that are golden like that, and I need very much to keep remembering that.