Yesterday I had an experience which made me think a very lot. We went to a medical study at Mass General, and Janey was tested all day. These were IQ type tests, and also autism assessments. I felt like crying all day long, as I could tell Janey was "failing" badly. She refused to answer things I know she knows, she pretended not to understand anything said to her most of time, she wanted to just do laps around the room and chant things. After the day was over, I finally realized what bothered me most about the day. It wasn't Janey's "failings", it was the fact that I don't think anyone, me included, was appreciating what a wonderful kid she is. I wish she had been able to show her many amazing qualities---how she can sing so many songs, how she can melt people's hearts in a minute, how she is amazing and interesting and fun. She tried---she started the testing by going up to each person in the room in turn and hugging them and getting on their laps. It's something she does a lot, to connect with people, I think, to compensate in her way for her lack of being able to talk easily. She does what she can do. She enjoyed one of the tests, where they were having a pretend birthday party, and putting pretend candles in playdoh. She kept trying to go back to it all day, when the testing had moved on. I felt like crying later thinking about how she enjoyed that so much, and instead of enjoying it with her, we were hounding her to say what stupid pictures were, or make block designs or the like. When we got home, I spent hours just playing with her, hugging her, making her laugh at silly jokes only she and I understand, just looking at how beautiful and interesting she is.
I was prompted to do a search to see if there are other parents out there who just believe in acceptance of their kids. I found this website
http://www.taaproject.com/
I don't think it's exactly my philosophy, but it says a lot I like, especially how autism should not be viewed as a tragedy, and how they are very skeptical of the vaccine connection.
I have a lot to think about.
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
1 comment:
I think that is one of the most frustrating things- when you know your child is not showing all she can do! And you want people to see her shine, and when it is an appointed time, like testing , it isn't the right time for her, for whatever reason. You are so sweet the way you talk about her here, the way you accept her and appreciate her strengths. I wonder how the ABA is going? How do you feel about that?
Hugs and kisses to you XXXOOO
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