Monday, December 28, 2009

Christmas/end of year

The end of the year always gets me thinking about progress, and wondering what kind of year it was for Janey. I can't say that overall she made much progress this year, which is probably why I am feeling pretty low today. Her talking isn't better---it's maybe a little worse, except for the rare times she goes on one of her talking frenzies, which is usually when reading a book to herself (she doesn't read, but she tells the story) or when singing to herself. She isn't that much happier, although we are getting better at knowing what is bothering her, or at least we have a list of things we check now---is she hungry? Bored? Tired? Constipated? I think I figured out she is tired much more easily than we realized, and she is going to bed between 6 and 7 most nights. She is in a wonderful classroom and getting a lot of very good support, but I don't think it has really shown itself yet. One area that seems a little positive to me is her interact with other kids. A few mornings when we got to school early and she was playing with kids outside the school, she seemed much more at ease, smiling and laughing and obviously very happy with them. I observed a few other kids there I know are on the spectrum, and the difference was quite obvious. It goes along with me sometimes thinking she isn't really autistic, but something similar. We had a lot of testing done through a study we joined, and that was very depressing in terms of showing her abilities on a testable scale---she is most certainly at least moderately retarded according to that. She hasn't learned letters, numbers, colors, shapes...all the things I've been wanting her to learn for years.

Christmas brings sad feelings to me in a way. Every year I tell myself that maybe next year, she will be able to anticipate Christmas, will be eager to hang her stocking, will understand what presents are, will ask for things....just doesn't happen. But she was mostly delightful this year. She loves carols. I played a carol CD in the car every day for a month and a half, and she learned most of them. One day, when I played the Halleluiah Chorus, at the end of it, she clapped loudly. I would look at her in the rear view mirror during the songs and see such sincere happiness in her eyes. I felt like it was a time we really connected on the same level. On Christmas eve, she came up to me and said "I want to go to the streets of Bethlehem". I know she didn't understand what she was saying, but I think somehow she connected the holiday with the songs, and heard that Bethlehem was a theme. It certainly brought tears to my rather non-religious eyes.

I think we got a little more accepting this year. I think we realize she isn't ever going to be exactly like other girls, but she is a wonderful girl, and if we work on figuring out what makes her happy and on understanding her needs, all of us will be happier. Best wishes to all for 2010.