Wearing my Advocacy Hat, and Other Reasons I Haven't Been Writing

The beginning of the school year often signals the need to don my advocacy hat where my two younger daughters are concerned. This year has been no exception.

Earlier this month, E's electric scooter supplier required considerable prodding in order to make good on a promised modification. The rep arrived yesterday to loan us a new seat while he fixes the old one.

There's also the matter of E's physical therapy schedule. Over the summer we discovered E needed therapy big time because her left leg and hip had tightened considerably. We made a call to the high school mid summer to let them know E had started regular therapy with Easter Seals, and that she'd require continued therapy during the school year. As of this week, we're finally moving toward a school therapy plan that coordinates with the one at Easter Seals.

Then there's S. My twelve year old struggles with a condition called childhood apraxia of speech. She understands what someone says just fine, but when she tries to express herself, she stutters, often so profoundly that friends and family feel compelled to finish her thoughts, rather than wait for her to get unstuck.

Unfortunately, this type of apraxia isn't something you grow out of. Over time the hope is that you'll learn strategies to minimize its effects.

This summer, despite daily speech exercises not to lose the progress S made last year, the condition worsened. To give you an idea of what's been happening at our house, tasks most people take for granted--like talking on the phone to friends, or chatting at the dinner table about how our day went--became so difficult for S that she turned to jotting down her conversations on paper rather than saying anything out loud.

The first day of school I sought out the speech therapist, D, begging her for help. "Something's wrong," I said. "S is worse off now than when school ended."

"Have you tried using her software during conversation?"

The software D was referring to is an amazing tool called FluencyCoach. With it and a headset, S is able to read out loud at 90 percent fluency. With few exceptions, we used it daily over the summer for reading. But I'd never imagined the software could be used for anything else.

"You can do that?" I asked.

"Oh, yes," she said, nodding. "A number of kids have success this way. When S comes home today, ask her about how her day went while using the software, and let me know what happens."

"What about the rest? S seriously went down hill this summer. Her friends talk for her these days. And she did a rock dance camp at the end of July, and on the ride home each day it took her 10 minutes to get out one sentence about how her day went. 10 minutes. We can't let her live like this. It's not right. It's not fair. There has to be a way to help her."

D's forehead wrinkled the way it does when she's thinking. "Try the software after school. I'll work on things from this end. Don't worry. We'll figure this out."

That afternoon, I called S over to the computer.

"Hey there, sweetie," I said as she dumped her backpack on the floor. "Come here a sec. I need you to try something."

"Wh-what?" she asked.

"Mrs. S has an idea on how we can help you talk easier. It's a different way to use your software. Here." I held out the headset. "Put these on, and tell me about your day."

I'll never forget the look of surprise on S's face when she spoke her first sentence. She was perfect. No blocks. No stutters. Just slow easy speech. She grinned and dove in, telling me about every last detail of her day, down to what she ate at lunch.

That was the first time I cried that day. The next was later that night when S used the software to talk with P. He sat there speechless as S talked and talked, not stopping long enough for us to get but a word or two in edgewise.

"What's your favorite color? Mine is pink.

"What's your favorite food? Mine is mandu.

"What's your favorite..." And on and on.

It came spilling out, one question after the other, as if S was catching up on years of pent-up conversation. P and I sat and listened. Until we did what we never thought we'd ever be able to do with our youngest daughter. We cut S off because it was way past bedtime.

As you might imagine, butt in chair time has been rare these days as I advocate for the next step: getting this software into S's classrooms so that her teachers and friends can get to know the real S. I was willing to advocate for the school loading software on every classroom computer. But it turns out a portable device exists, one you can wear on your belt. D went to bat for S and won approval for the equipment. The PO went out last week!

On deck: presenting at the Illinois Library Association Annual Conference tomorrow. Somehow, in the midst of all the craziness we writer moms endure on a daily basis, J and I managed to pull together our Powerpoint about our experience leading the Orland Park Public Library's writers' workshop for youth and teens. K, our partner in crime from the Orland Park Public Library, says she thinks the slide show looks great. Fingers and toes crossed that everyone else agrees. We're on tomorrow at 9. Wish us luck.

Current read: Allies of the Night by Darren Shan.