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Thursday, July 8, 2010

Holding my breath

I haven't written in a few days, because of my extreme fear of jinxing things. The last 5 days or so have been pretty good! Janey hasn't been screaming or crying much at all. I think the higher dose of the medication is working, or something is working. She just seems happier. When she starts to get upset, it's much easier to get her back and calm her down. It's so wonderful to have a day without extended crying times. Along with the medicine, it might also be partly just adjustments we have made. I'm backing off some on taking her out many places---I think she needs some time mostly at home, very predictable routines. Not totally, but a lot of the day very low key. My parents were here yesterday and got to see a calm Janey! (and hear our stories about the awful time a few weeks ago) We went to see my friend Fab a few days ago and Janey was happy almost the whole time, and saw my friend Amy a bit ago also and had a very good time, and got to see Janey playing with her daughter, and actually talking back and forth a bit (with her confusing reversed pronouns---they were playing with a water squirter and her daughter said "Do you want me to squirt you?" and Janey said of course "Squirt you!"---which reasonably the daughter replyed "She wants me to squirt myself!") The nights have featured pretty good sleep, and overall it's been a nice stretch!

As for talking and so forth---I feel like it's been reasonably good. But I think I only compare Janey to herself. When she says something I haven't heard before, or does something new, I get very excited. Sometimes the people around me seem a little perplexed as to why I'd be that thrilled to see her doing something most 2 year olds probably do with total ease. Yesterday she asked for water "in a glass"---she always adds that, I'm not sure what she thinks we usually give her water in---and then glanced at the fridge and added "ice---want ice" which I thought was a great sequence---asking for something, and then adding on an appropriate phrase. But I realize that's the kind of talk probably most 18-24 month olds would handle with ease. The other day I asked her to draw a circle, and she drew something definitely round. I was so happy. I realize lately after the horrible crying times, I think something changed in me. I stopped thinking as much at all about her delays and autistic behaviors. Not completely, of course, and I will think about them again many times, but for now, if she's happy and making even very minimal progress over her own past marks, I am happy. I'm only holding her up to herself. Tony is feeling the same way. It must be a landmark for a lot of parents of children with retardation---the moment you realize that your kid is your kid---they have their own measuring stick and it's not the same as other kids, but you can still feel happy about the tiny steps they take, and laugh with them at funny things, play with them at their own level, find joy in what they enjoy, etc. I'm being uncharacteristically cheery and maybe a bit Pollyannaish, but for once I will let myself be that way.

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