Saying Please

There were only five of us at Audrey's team meeting today. The topic was AAC, which might stand for Augmentative Alternative Communication, or maybe Assisted Adaptive Communication, or perhaps a different mix of those A-words. You'd think I'd remember after more than six months of exposure, but I'm willing to swear I've heard all of these versions used by the experts.

I always take two Advil in the car, before heading in to the school. This is one of my best survival strategies for IEP meetings. Team discussions have often been contentious (to say the least), when I have to push and prod and pummel to get the school to provide the things Audrey needs (and is supposed to get, by law). A family advocate once told me it's a good idea to bring donuts or some other nice snack for all the teachers and other team members, to soften them up and create a pleasant atmosphere; but I've found that nothing beats a good, solid Advil base going in, to help me make sure things move in the right direction and I make it out in one piece.

Today we had Audrey's deaf ed classroom teacher, her Speech Language Pathologist, a district "AAC tech" expert, myself, and the vice principal of her school, who has to be there to sign off on anything that might cost money. Her individual aide and her OT were both out with the flu, which is why our ranks were so thin.

Since last May we've been meeting to assess what kind of AAC device could benefit Audrey. Right now she uses a little bit of sign language to tell us her wants, usually one word, sometimes two or three words together: "Car cookie restaurant", if she's not happy with the cookie in the cupboard at home, for example.

She can type lots of words, too, though she doesn't use that for communication yet; that's just her own personal thrilling exploration of how letters can get put together to make words, and the words are the same as the signs she already knows, and also they pattern in fascinating ways. "Bug bus," she will type, over and over. "Car cat coat boat."

So, here's the thing: We sit around, perched ridiculously (and painfully) on the little elementary school chairs, looking at all these devices that maybe she could learn to use. The reps from the companies who make them came out to some of the meetings, and showed us touch screens with obscure symbols and color coded buttons, and how, if you just tap-tap-tap like this it makes a sentence on the screen and you tap again and it talks. And really, the voices don't sound all fuzzy or mechanical nowadays, we could pick a girl's voice that maybe would be what Audrey's voice would have sounded like, if she'd ever spoken.

I have pictured Audrey learning to harness the amazing power of one of these devices, the power to speak. I've imagined her walking up to the counter in McDonald's and ordering her own "six McNugget happy meal please" (because, we can give her a polite veneer by programming that "please" at the end; and maybe it will help people overlook that she is compulsively licking the palms of her hands all the time, or flapping her hands and shrieking). Or at Starbucks, she could ask on her own for her all-time favorite "water with no ice in a grande paper cup. Please."

But I never got to the thing. Here's the thing: Can she learn this? Because, if she can't, or won't, we could pour years of effort into it, for no good reason. Effort that would be better spent on other things.

Just keeping the batteries charged and the device unharmed will require lots of work. I know this for a fact because I already do this with her cochlear implant, her FM system, and the AlphaSmart she types on. In fact, this is the single biggest reason that I never manage to have a camera on hand with charged batteries and space for new photos, no matter how important and irretrievable the event. I cling fondly to the belief that I would absolutely be creating photographic memories for my girls, if all my tech device recharging energies were not directed towards Audrey's special stuff.

"What would Audrey be trying to communicate, if she had more communication to use?" asked the district AAC tech guy (who seems to have some combined degree in linguistics and computer programming and to be just as removed from real-world possibilities as you'd expect from that blend).

And that is the thing once again, writ large: What is Audrey thinking? What goes on inside her head, that she can't get out to share with us?

In my life, this is one of the Great Mysteries, one I am compelled to ponder over and over again. It's right up there with the same Great Mystery question I ask of God, over and over: What were you thinking? I mean, really, what were you thinking?

And can't I change your mind?

"Please?"