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Monday, December 19, 2011

The reality of progress

As I sat down to write this post, I thought about this morning. It seemed in my mind to be a good morning. Then I reviewed Janey's behavior. She woke at 5, as she almost always does, asking for videos. When bored at one point with them, she decided to play in the cat litter, which luckily we caught quickly. She peed on the floor a bit after that, all over the place. And just before my hands hit the keyboard, she dropped a piece of cheese she was done with in my coffee. But the mind's editor had edited out that background noise, the everyday autism stuff, and concentrated on the progress. It's how we stay sane.

When I used to like to read books about children with autism (which I don't do, now, but before having my own example, I found fascinating), there would always seem to be a point where the child did something amazing---said a long sentence, showed empathy, created a master work of art, "passed" for normal in a classroom---and the book would end there. It would seem to me like from that point on, things would be great. If they could do that amazing thing, the autism would fade into the background.

The reality is that the progress is wonderful, encouraging, fantastic, but it doesn't create a glorious end of story moment. The autism is still there.

Janey really has been making wonderful progress lately, and I am thrilled about it. I had her IEP meeting last week, and as always with her amazing team, it was an uplifting time. I am almost moved to tears every time I think about how many people at Janey's school love her, care about her, want the best for her, work hard for her. I never, ever take it for granted. I heard great things about Janey---how much more she is greeting people, how she is often recognizing her name, how the other kids love her. I heard the cutest story of all time about her. When her special ed teacher asked her, as Janey gazed at her, "What do you want?" Janey answered "I want to wish you a Merry Christmas!" And then they sang the song together. I heard so many positive things. But of course we all also agreed that Janey still needs to be supervised closely every single second, for her safety. That amid all the progress, the fact remains she doesn't know most of her letters, she can't write, she speaks mostly in 2-3 word simple sentences, she can count but not really meaningfully, she is inconsistant even about the things she knows well. None of that bothers me much. But it stays there, in the background.

Yesterday was a great day. We visited my sister and her son and his girlfriend. Janey learned the girlfriend's name right away, and used it well. At one point when she was crying, she said one of her longest sentences to me "I am upset because I want to go home". (she didn't really that much, but at that moment she did!) She was good in the car, something quite new. She ever did a classic pesky younger sister bit. Freddy was trying to practice his declamation, to recite a poem in class today. Every time he started to recite it to us, Janey starting reciting from a video, in a loud voice. This happened about 5 times. Then Freddy was quiet for quite a while, and so was Janey---not a word. As soon as Freddy started reciting again, she did too, in a loud monotone. She was driving him crazy, and she knew it! Even Freddy had to laugh and feel a little proud.

And yet, she can't do so many things that are special for this time of year. She has no clue what asking for something for Christmas means. She can't anticipate Christmas---she doesn't have the necessary knowledge for that. I am not a huge Christmas gift giver, but there are special things her brothers want, and I know they will be excited to get. I never have any idea what to get Janey. I will probably go with some Funonions, her favorite snack. I know she'll be happy with that. But I'd love to have her asking for the latest hot toy. Yet, she love the tree. And she adores Christmas songs, as the story above speaks to. I am very lucky to be able to enjoy the progress, to see the cute and fascinating things she does.

And so it goes on. It's reality. Reality doesn't end with a breakthrough moment. It's lifelong. We can thrill in the moments along the way, and stumble on, living our real life.