Today it was unmistakable at lunch. Joy wanted more Kix. (What, you don't feed your children delicious nutritious breakfast cereals at lunch? C'mon!!) And when her portion was done, she very deliberately gave herself her own little fist-bump, the sign for "more" that has come and gone over the months, and come and gone. Who knows if it will be here tomorrow. Or even this evening.
Just for today, she's chewing the bejammers out of her super-strength chewy-toy. This overwhelming need to chew came back two or so weeks ago, I think. She's also leaving it clipped onto her shirt today. The last phase of super-chewing, she would let Lynda clip the chewy onto her at daycare, but would pull it off in a second at home. Who knows if she'll need to chew tomorrow, or if she'll leave the clip on.
Just for today, she's been pushing some boundaries. Climbing onto the toy chest to get to the TV. Climbing onto the glider-rocker in the living room, which she never used to do. Most of the time she's responding well to a voice-prompt of "Joy, down!" But who knows if she'll climb tomorrow, or if the voice-prompt will work tomorrow.
This weird uncertainty, this not knowing when the switches and sliders on Joy's mixer board will flip and slide, is making it a challenge to write her IEP, her Individualized Education Plan for the upcoming school year. Her school-district team leader commented to me the other day, after having combed through months of daily reports, that there are lots of times where we report something new starting, but then she often doesn't find a mention of when it stopped.
Well, yeah. At one point back in September I blogged that Joy had retrieved the word "ma-ma-ma". A week later, I wrote,
And we never know, from day to day, whether this day will be the last day that she says ma-ma-ma for the next year. We can't take any gain for granted. And that's very, very hard.
Guess what. One day, probably not too long after that, was the last time I heard "ma-ma-ma". But I don't know what day it was, because when she said it for the last time, I didn't know it was the last time. I don't even remember when I realized, "Hey, where are the ma-ma-mas?!"
So we end up not having a good record of when things go away, either the things we want to go away (like the night-wakings, still with us, alas!), or the things we desperately wish wouldn't go away. Like "ma-ma-ma."
It's funny, but it almost feels as if IEPs are written with neurotypical children in mind, in that way. You write goals, with the general expectation that the child will make documentable progress toward those goals, so you can record when a goal has been met and set new, higher goals. It's not set up for our reality, which is more like, "Joy was doing this thing pretty well in the fall. Then she didn't do it for a long time. Now she does it sometimes but not always, and we don't know why she does it some times and not others, and it might disappear again, who knows."
So, what goal shall we write for whatever "thing" it was? Do we keep trying to teach it? Do we figure she knows it but doesn't show it? If she doesn't do it, how can we build on it?
IEPs are not built for living in the moment.
And today, just for today, maybe even just at lunch...
Joy signed the word "more."