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Tuesday, April 12, 2011

I wish it didn't work

Janey has had some great days lately. She's been talking a lot, being adorable, happy, sweet. When she is cheerful, it all seems so much easier. I can feel hopeful---I can feel like the good kind of special needs parent, not the grouchy bad type.

So what does my title mean? Well, the difference in Janey's behavior is connected with us raising the dose of her medication a little. A week ago, we saw her psychiatrist and told him things had been getting increasing tough---more crying, less talking, more tantrums, more not sleeping, etc. He's very conservative about the medication, but he said she might have outgrown her dose and we could raise it a bit to try. We held out a few days, as the medication scares us, but finally gave in. Janey can't learn when she is crying all day, she can't learn when she hasn't slept, she can't enjoy life when whatever inner demons she has are tormenting her. So we gave in. And within a day, we saw the huge improvement.

I shouldn't really wish it didn't work. I'm GLAD it works. The medication doesn't MAKE her talk, or learn, or be happy. It somehow or other calms and quiets down whatever is inside her head that makes it so tough to be happy. It gets rid of "the banging noise" and "the clicking noise" that she once in a while talks about when she is screaming---the noises or voices or whatever they are that torment and scare and dominate her. And I am hugely grateful for that. But no-one on earth wants to give their 6 year old girl a medication that is basically called an anti-psychotic.

But it's great to see what I thing is the "real" Janey---the personality that she has when she isn't tormented. One the way to school yesterday, she did some great talking. An ambulance went by, and I remarked on it. About 5 minutes later, she said "I hear the ambulance!" That's a very rare kind of statement for her---something just commenting on what she's heard, not asking for anything. A bit after that, she said "The CVS!" We were passing the CVS store she loves, and again, just a comment! But then she made the connection and said "I want chips!" as on occasion I've been known to get her some Pringles there. I told her "First school, then CVS" which seems to be the way she best understands waiting for things---she doesn't seem to get terms like "after". Of course, I am a bad Mama and don't always "remember" to stop at the CVS on the way home unless she remembers, but hey---it's less junk food that way. Last weekend, another great talking moment. We were at a roast beef place, sitting by the window (and it's great in itself that she was able to go to a restaurant, even one that is semi-fast food such as this one) and she saw a bus pull up and let people on and off. She yelled out "I want to hop on the bus!" We haven't heard that before, especially the "hop" part! William was with us and of course was thrilled she was showing an interest in public transportation, his favorite thing!

And so it goes on---patching together the best life I can for Janey, doubting myself every inch of the way, but trying to always use as my guiding principle---what makes her able to most live in our world without frustration and sadness?

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