Thursday, February 26, 2009

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."

6 comments:

therextras said...

Have to say this one kinda hurts to read. I appreciate what it took to write it.

The IEP concept fails for Joy. Not her for the IEP.

Here's hoping you are able to find flexibility among the professionals involved with the IEP.

There is a bottom-line for encouraging her growth in a school environment - even if the direction is not always clear.

Even if the IEP functions more as a formality than as a useful tool, in and of itself, the IEP will not rule her nor contain her. Hoping you are not made to feel contained by the IEP either.

Keeping you all in my prayers. BRatK

StatMama said...

This is a great blog. How did I not find you sooner?

They tell me the IEP is a "living, breathing document", and that we can meet and make changes as needed. I totally get what you are saying about the expectation of progress to be made. My son (PDD-NOS, verbal dyspraxia, global developmental delay) makes progress, loses it, makes a bit more, stops completely for weeks or months, talks until I think he's nearly normal, reverts to babbling, one-word sentences and signs, and I just never know what the next day will hold. The IEP feels like just another list of goals we might not meet. So for living in the moment, we have to, whether the IEP allows for it or not. Our children make the IEP.

Sorry for the ramble. I just can relate so much to the joy in initiated communication, like signing "more". There was a time we had none of that at all, and I still get sniffly when I think of the first time it finally happened.

JoyMama said...

therextras - thank you for "getting it." You intuited just perfectly the mood in which this was written.

I do need to give a shout-out to Joy's school-district team leader. She makes the best of the IEP process, makes it as useful as it can be I think. And we've never had the IEP used as a containment on Joy. It's just that it's... there, you know? We have to jump through the hoops of creating it. And the quarterly "progress" reports have to be filled in, even if they don't really fit. And all that.

StatMama - welcome, welcome! How's come I never visited StaticVox before either? And where *did* you get that awesome background template?

It's so nice to hear about another kiddo who has a Joy-like trajectory. Thank you for "getting it" too!

Niksmom said...

I totally get what you are saying about the IEP's. It's so hard to take it moment by moment and live for the day when our own expectations are so deeply ingrained that Y must follow X and things should be linear and measurable. I struggle with this constantly with Nik.

During his hospital stay this week, I saw major regressions in some areas and major cognitive leaps forward in unexpected areas. It still has me baffled.

Today, he said "Mama" with purpose. I wonder, too, when I will realize it might have been the last (for a whie anyway)? Sending hugs. xo

rhemashope said...

Oh, I know. I know. One of the hardest things about all this. (That's why I love the title of your blog.) I have a hard time sharing with others - family and friends - when Rhema says a word b/c I know it's most likely going to disappear. But friends think "she's talking now" b/c she said a word once. It's there, but why, why, why did it go away? Will it ever come back?

Anyway, I'm just thankful for you and this post. It helps to know that I'm not alone in this.

Elizabeth Channel said...

I'm over hear complaining about food spills, mud tracking and bad smelling wild rice. You just put it all in perspective for me with this post.