We were so hopeful a few weeks ago. Janey was off all medication, and we really saw no change from when she was on it. She was smiling a lot, and recovering slowly from her surgery and hospitalization. But starting about a week ago, things went quite strongly downhill.
The screaming has been the toughest thing. Janey has always screamed off and on, but lately, it's a different kind of setup. Things will seem calm for a few minutes, then she will ask for something she wants. If I can't give it to her that very instant, she screams---a loud, piercing, hysterical scream. Then she bites her arm, badly. Then, sometimes, she tries to hit me, or anyone else who is around.
In looking for positives, I must say these episodes are pretty quick. They are super intense, but fast. They start too quickly for me to start giving positive reinforcement for not getting upset---sometimes she starts screaming as soon as she asks the question, if she knows the answer is no. And if the fits go on very long, it's been working lately to say "Can you try to calm down?" and just waiting. She does try, and she does calm down. For a few minutes. Until the next fit.
The screaming has essentially trapped us in the house. We can't take Janey anyplace at all. Tonight, Tony tried taking her to the grocery store, someplace he's taken her for many years. It was always a positive routine for the two of them. However, after they had picked out just a few items, Janey did her extreme screaming and arm biting. They had to leave. If you are thinking "Oh, lots of kids have tantrums in stores. You just have to wait them out!" then you have never seen Janey's screams. They are the screams of nightmares, and the arm biting is an added touch of horror. Every single eye in anyplace we are turns to us, and if we stay, it will only happen again a few minutes later.
Yesterday was one of the longest days I've ever had. Tony and both boys were at work. Janey was not happy. I would say she had a screaming episode about every 10 minutes, all day long. I tried everything. I tried reading to her, coloring with her, singing to her, giving her a shower, playing toys with her, sitting with her watching TV, cuddling her, listening to music with her---nothing pleased her. She wanted to "Go to Maryellen's house!" She loves Maryellen, but if we actually go there, she is happy for about 5 minutes. And then, when we leave, on the way home, she again says "Go to Maryellen's house!" It's just something to ask for. It's not really what she wants.
Janey hasn't been to school for a long time, since late May. That's probably one of her longest stretches in years without school. Summer school starts Monday. I am hopeful it will help, but not confident, really.
We started the medication again today. We didn't want to, but the intensity of Janey's unhappiness told us that what we wanted wasn't really the issue here.
It is getting harder and harder lately. I have to admit it. I sometimes truly feel scared, and I know I feel depressed. I do see a therapist, but I haven't been able to go since Janey got sick---there is no-one to watch her. However, although I certainly like having someone to talk to, it isn't going to change the situation any. I am more and more aware there is not any help but school. It doesn't exist, not for kids like Janey.
I will mine for positive at the end here. I cut Janey's hair out of desperation the other day, because after the long hospital stay it was quite tangled and she wasn't happy with brushing. I think it came out not badly for a completely non-professional haircut. Now a quick brush is all she needs. It's little tiny things like that that are all we can really do to make our lives easier. So here's a picture of Janey's new 'do!