Posts Tagged ‘communication device’

In her own words

March 3, 2013

a white board with large magnet letters on it

Chloe’s communication device. I take off Q, X, Y and Z to make more room for the other, more popular letters

Today, Chloe and I had a communication breakthrough. She was lying on her mat with her dolls, when I noticed she was frowning. This is always frustrating for both of us: something is wrong and she can’t tell me what it is. And when the frown appears, the tears are always coming soon. I carried her to her room as she cried and laid her in her bed. Should I give her medicine? Try to figure out what’s going on with our yes/no system? Let her cry it out? This is a common frustration for parents of very young children, but Chloe and I have been dealing with it for 9 years, and we’re both getting sick of it. I decided to try to the magnet letters.

The magnet letters are large and soft, and each of them is a perfect size–just large enough to fit in Chloe’s hand. I arrange them on a white board that is about a foot and a half square and hold the board at Chloe’s right side, and she chooses the letters one at a time. Sometimes it takes her a couple tries to get the one she wants, so I always double check before I write them down.

Chloe has an iPad, and we’ve tried using a special communication device, but grabbing letters from the board just works better than hitting buttons on a touch screen. We’ve actually been using this system for years, in what I would call “low risk/high reward” situations. Basically, we use it to name her dolls. I’ve tried using it for other things, like spelling practice, but Chloe doesn’t care enough about showing off her spelling skills to make that kind of effort (the reward isn’t high enough).

And when she’s upset, it always seemed too stressful for both of us. Trying to coordinate her arms and spell words and make me understand what she’s trying to say is hard enough under normal circumstances, and when Chloe’s uncomfortable and crying, it just seemed like too much potential frustration (the risk is too high). Usually, I rely on yes/no questions when something is wrong, and we slowly narrow down the answer.

But today, I decided to give the letters a try. Grabbing letters off the board has been getting easier for Chloe–the last time she named her dolls, she selected long strings of letters with ease. And at nine years old, Chloe seems pretty comfortable with spelling. Of course, her skills have never been put to the test like this, but it seemed like a good time to try.

I was nervous. What if it didn’t work? What if we ended up with a nonsensical string of letters and the whole thing was just frustrating and disappointing for both of us? It was a risk worth taking, I decided.

I held the board up, and her hand immediately settled on the “H.” At this point, I had a pretty good guess at what she was trying to say. She had a headache. Not an existential crisis, not some way I had disappointed her, not some secret grievance she’d been nursing for days. Almost anticlimactic. But we pressed on.

I was a little worried that I would influence her, that since I had guessed she was spelling “headache,” I would somehow cue her to actually spell that. It’s something I think about a lot when it comes to Chloe’s communication, but all I can do is try to stay objective, try to do everything I can to make sure it’s her, not me, who is doing the work. The next letter was an E, and then Chloe hesitated, frowning.

“It doesn’t really matter how you spell it,” I said to her. “You don’t have to get it perfect, just get your point across. It’s okay to leave out letters.”

But Chloe wanted to spell it right: she chose an A next, and almost immediately, her hand moved to the D. We were halfway there.

“Do you want to say headache?” I asked, holding out both my hands for a yes or a no. The answer was no. Now I was stumped. What could be wrong with her head aside from a headache? Maybe it was an existential crisis. Nothing to do but press on.

The next letter was H. Then U, R, T and S. I smiled. Chloe did have a headache, but she was also determined to say it her way. She didn’t want to take short cuts–didn’t want to leave out letters or let me substitute my words for hers. She wanted to tell me her head hurt. And she did.

Behind the curtain

February 18, 2012

As Chloe gets older, she’s gotten more interesting, as tends to happen to most of us. But it’s also gotten more frustrating, to me, that she can’t talk.

This isn’t because it’s hard to communicate with her. As I pointed out in the previous post, Chloe can tell us a lot of things with our various communication methods. She can even name her dolls by spelling out names, letter by letter. (Her latest acquisition, a princess doll, is named Hiebrow–apparently she learned the word at school and knows the meaning, if not the spelling exactly.)

What I’m missing are the random thoughts, the casual pearls of wisdom that are attributed to my friends’ children day after day on Facebook. I want to know Chloe’s perspective on everything, because I’m sure it would be fascinating. Partly, yes, because she’s my kid. But there’s more to it. Chloe’s experience growing up with a severe disability has given her a complicated and unusual perspective on life and I’m dying to know the details.

There’s a paradox here, because i believe it’s exactly this inability to express herself that has made Chloe so incredibly patient, empathetic and resourceful. This amazing person is developing behind a curtain, hidden from the rest of us, but it’s the curtain itself that makes her so extraordinary. We’re moving it out of the way, inch by inch, and hopefully one day we’ll see the all the awesomeness in there.

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