Screaming

The past few days have been a roller coaster. At times, Janey has been incredibly tough---as bad as the worst of the bad days. On Saturday, she spent huge parts of the day just screaming. And I mean the kind of screaming you can't even imagine unless you've seen and heard it---screaming with her mouth wide open, a look of fury or terror or something in her eyes. She is scary when she does that, scary to herself and scary to us. It comes out of nowhere, or from a simple refusal to do what she wants right when she wants it, or when she just feels slightly frustrated even. It happens more when she is tired, or hungry, or bored. And it's unbearable, pretty much. We have been doing everything we can just to avoid the screaming---taking her for long rides, which she loves, doing nothing but holding her, keeping her incredibly busy. Today she was cheerful almost all day. Both Tony and I were home all day, and did nothing but play with her. It was nice, but not doable every day. And even so, by evening, she had a screaming fit. She tried to bite Freddy, which is always my big fear when she gets like that, or that she will bonk heads with us hard, or hurt herself somehow. I have no clue, no idea how to help her. We actually lowered the dose of her medication after this got started---we had been on a higher dose for a month or so and things seemed to be gradually getting worse. I am not going to keep giving her doses of medication that don't seem to do anything, or make things worse. And I don't think there are a lot of other medications out there. Or ideas out there on how to help. I am very, very worried about how she will do in summer school. Mainly, I worry how the teachers and aides will treat her if she is very difficult. I know at her regular school, they love her enough to handle the tough times, and they know me well enough so that if they couldn't, they know they could call me. But here, they won't know her. I did hear that some other kids are going to the same location from her school, even one boy in her class with a very nice concerned mother, and that helps to think about---I'm not all alone. But with a child that can't tell you about her day, it's scary to have her at a new place. However, I think I have to try it. I have to stay sane. I can't be a mother to her without breaks now and then. Even with these few days of summer, which weren't much more than the weekend, I felt completely overwhelmed and out of energy. I am finally admitting that Tony and I need help with her---by respite from school, and more if we could get it, which we can't, so school and summer school are our lifelines.

And yet, there were times lately she was precious. Today she did one of her very, very rare pees in the potty, which was great. There was a long period today when she was being so engaged and cute and loving. We played all kinds of games like Creep Mouse and Here We Go to Boston and things. She loves being outside and playing in water (and making mud pies) She loved our car rides. She is talking a tiny bit more than a few weeks ago. It always seems slight progress comes with these hours of horror. Maybe every time she steps ahead a little, she sees how far she is from the rest of us, and how little she can communicate. I'd scream too.