Just for Today, She Signed the Word "More"

We've seen it a couple of times recently.

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."

A Single Goal

I should probably call this post "A Single Goal: or, More Cosmic Convergence."

Way back in August, Barbara wrote a post at TherExtras that criticized the hodgepodge that often results when too many experts are trying to accomplish too many things with a child:

What I don’t commonly see - or have not seen most of 30 years – are concentrated efforts to learn one skill at a time. I don’t hear or read families that do this. I’ve never seen an IEP that said “this school year Aloysius will be potty trained” or “Esperanza will learn to feed herself” – not at the preschool level, not at the kindergarten level, not at the elementary level.

How many high school students in special education do you estimate I’ve met who cannot do either toileting or feed themselves without assistance?

As I told Barbara at the time, Joy has a standard multi-faceted IEP, chock full of various goal areas for her therapists to address with her.

But even before the school year started, I had a conversation with Joy's school-district team leader. Unprompted, she told me that she had a thought for a single overarching goal for Joy this year, IEP complexity notwithstanding. That concept was: imitation.

Though it was a different angle than the single movement-oriented and task-oriented kind of goal that Barbara presented, there was power in that single simple-yet-not-so-simple idea of imitation. It has been a useful touchstone throughout the semester so far.

So then yesterday morning I once again had the chance to hang out with the incomparable Mama Mara. We got to talking about our respective blogs and I was musing on some of the posts I'd been meaning to do, and mentioned the single-goal thing. Her eyes lit up with cosmic-convergence connectedness, and she told me about her son's case manager at last week's parent teacher conference asking her the single-goal question: if you picked just one goal for your son this year, what would it be? I am terminally impressed that Mama Mara had an answer at the ready: that he would be able to get a handle on the "stuff" he needed to get through the day, keeping track of coat and backpack and such.

And thus do good ideas meet, shake hands, and ripple back out into the blogosphere...