Janey had a great day at school on Friday. Today, she went to the "Treat House", the respite house, and went apple picking. She was cheerful when we dropped her off and when Tony picked her up, and he didn't hear any reports that she was upset there. However, a few minutes after getting in the car, she started to cry. She cried all the way home, and kept right on crying. She cried, screamed and cried, from 4 - 6:30. As of this writing, she's falling sleep.
I wish I could truly describe what spells like this are like to someone who hasn't seen one. It's hysterical crying, the crying of despair. She hears what we say, based on an occasional echolalia word, but nothing we say helps. Nothing we do helps. We have absolutely no way of knowing what's wrong. She doesn't say. We can guess, and today's guess was that she was tired, as her sleep has been awful. Last night, she was up from about 1 am on. Not crying, but awake. For much of that time, she lay next to me, so wired that she didn't even really rest her head on the pillow. And then she goes off, apple picks, comes home, and of course she is tired. But she doesn't sleep, and that doesn't always cause crying. Is she hungry? We offer her food, she might eat a bite or two, but then she continues the crying. Her face is red, tears stream down. She is desperately unhappy, and I can't help. No-one can help.
At one point Tony took Janey in the back room to give me a mental break from the crying. Janey screamed for me, and Tony said she needed to calm down first. She got control for a second, said "I feel better" and he let her come to me. Within seconds of leaving the back room, she was screaming and crying again.
I think the source of her sadness is internal. But she doesn't have the words to explain that to us, or if it's not internal, to explain what makes her sad. The combination of retardation and autism and probably a mood disorder leads to a situation without a solution, or one that I can find.
I am glad school is happier for her, but of course that is also hard for me. I can't recreate school at home. Home should be a happy place for her, but I feel like home is where she goes to fall apart.
Lately I am feeling out of ideas. The crying, the lack of sleep---it's worn me down. I am so happy school has started, but I feel guilty in that happiness, because I am sure it's almost more about just getting a break from Janey than being glad she's learning.
What do you do, when you've run out of ideas? I don't know. I've read some scary, awful ways people have dealt with that feeling lately. Don't worry. I would not ever, ever go there. But more and more, I am starting to see that long term, Janey might need more help than we can give her, as a family. Getting that help is not easy. It's very, very hard. But so is the way things are right now. I've always gone with hope as my answer---hope that tomorrow, Janey will be happier, that she'll be back to one of the delightful stages where life with her is wonderful. Tonight, I'm having trouble drumming up that hope. I'm down to hoping FOR hope to come back, tomorrow or soon.