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Thursday, June 18, 2009

Crying off and on again

Janey went a while without the awful crying spells, but they are back a bit this week---just endless crying for no reason we can figure. She is waking up in the night again too. The first month with the ABA seemed really like a breakthrough---she was talking more and more social and happy, but the last week I hope is just a little break in the progress. She is repeating lines from videos more. I wish I could get a handle on her talking, understanding it. It's very odd. She says very little original when talking to people, but there are times when she is playing on her own or reading a book to herself that she talks tremendously well, with stream of consciousness long sentence and lots of expression. So there is a way she can do it, but just not socially or on demand. It is painful to watch her when she really wants to tell me something that can't be said with a set phrase. Often she will just resort to "hold my hand" and will take me where she wants to go. Today she said "I want to go to the ice cream store and get an ice cream cone". She meant Ron's, down the street, and we never get a cone, always a dish, but it was a good original question (I didn't have any cash so we didn't go, usually I do try to do what she asks if it's possible at all). I guess it bothers me as she gets bigger how it's so obvious she has some sort of disability. When she was littler it was acceptable not to answer people and to act a bit differently, but now it isn't. At the school, although I've certainly never told all the parents her diagnosis, they all seem to know she's autistic. That shouldn't bother me, but it does.

Thursday, June 11, 2009


Janey had her IEP meeting today. I guess it went well---as always, everyone loves her, all her services are staying the same or getting a little more, etc. But it seems like she is making so little progress. Any progress they mentioned was so tiny---learning the routines a tiny bit more, sometimes talking a little bit more. They try hard to be positive but do have to mention things like how her mood can vary wildly and that has a huge effect on how she does each day, and how no-one can tell what will make her happy or sad. They all mention the music, and they are going to try to get her music therapy. I know they all love her, and that is great, I just wish she was learning more.

The ABA is better than I had thought it would be. Christina is just wonderful. She is really gifted. She is so firm but caring, and really expects a lot of Janey. But hearing her report was a little discouraging as things I thought she had pretty much mastered it still sounded like she had a long way to go on. I know it's all a slow process. But the years are going by. Janey is almost 5 now.

Janet, the speech therapist, noted all the things she sometimes does well saying---lots of pronouns, plurals, vowel tenses, etc, when she is in the mood. But when she isn't, she can be basically mute.

I wish I understood her. Sometimes I think I am starting to, but then I am not. Tonight when she was upset, she said crying "I get sad. I get tired. I get angry. I get hurt. I get jealous" I guess that covers it.