By Leslie Lindsay
I wanted to share with you a personal moment–and one that I think will touch you, whether you have a child with CAS, or not. [Portions of this post originally appeared as a guest blog on Say What Y’all, hosted by Haley Villines. Thanks, Haley for allowing me to be a guest on your blog].
You won’t soon forget her. The red hair and blue eyes the size of saucers will linger in your memory. So, too will the fact that she is as fire-y and energetic as that copper hair that cascades down her back, framing her freckled face with possibility.
And when you hear her speak, you may have an inkling that she once suffered from moderate to severe childhood apraxia of speech (CAS), or you may be none the wiser. Although Kate is a bright, creative, and eager soon-to-be 2nd grader, she has overcome a road block most of us never have to deal with: a struggle to communicate expressively.
I won’t bore you with the early days of suspicion and diagnosis and our first experiences with an SLP, but I will give you just a teensy bit of background: Kate didn’t say much of anything—expect a friendly “hi”—for the first 2 ½ years of her life. She was diagnosed with CAS at that time and began an extensive speech therapy regime 2-3 times a week for about 2+ years. She is speaking just fine now—with a few minor backslides here and there.
When I was in the midst of writing, “Speaking of Apraxia: A Parent’s Guide to Childhood Apraxia of Speech,” (Woodbine House, March 2012), I developed and facilitated a small parent education group called “Small Talk: All About Apraxia” in the Chicagoland suburbs. I wanted to connect with other parents also walking the apraxia path, hear their ideas and dilemmas, and facilitate their journey. On one occasion, I brought Kate along. Actually, she asked to join me!
“Mom, can I go to your [a]praxia group?” She inquired one afternoon.
I shrugged and bit the inside of my cheek, “Well, I guess so.” I replied. “But it might be a little boring for you…a bunch of mommies talking about apraxia…”
“I don’t care. I want to hear what you’re talking about,” she replied.
And so she came. But, beforehand, I asked her to think about what she might say to these parents. She pondered that a moment and then rushed off to her room where she sat at her desk drafting out a speech. She presented it to me just before we headed out that evening. It read:
“I have upraxea [apraxia]. It is not seryous [serious]. All you have to do is practis [practice] your words more. Don’t wory [worry]. Your kids will be ok.”
Pride coursed through my veins. I hugged my daughter and praised her for being able to communicate her thoughts on the disorder that has plagued her for most of her life. It’s not every child who has that insight at her age.
Once at our “Small Talk” meeting, I introduced Kate to the group. The mommies smiled encouragingly as she read from her paper in stilted English, much like we might if we were visiting a foreign country and reading from a Berlitz book. They beamed and applauded afterwards, some even dabbing their eyes.
You see, it took a lot of courage for her to come to the group that evening and speak to a group of adults she didn’t know about something so intimate and close to her—to us as a family. I couldn’t have been more proud.
As usual, she was one to something. Having apraxia really just means that one needs to practice speaking more than others might. While I don’t want to oversimplify things—it’s hard, long practice—but if we as parents can reframe the diagnosis of CAS to “a-word-practicing-disorder,” we may have a lot less stress and anxiety.
Today—literally—we were talking about some words that are troublesome for Kate. She said, “I can’t really say shoulder. It sounds like soldier. And what’s a scone, anyway? You mean cone, right?” As a family, we laughed—we agreed—there are some words that are hard to say. But if you practice them, you just might learn to say them.
“ Apraxia. You just gotta practice.” –Kate L.
For more information on the Say What, Y’all blog, visit www.saywhatyall.wordpress.com
Coming up: The Teacher is Talking (Tuesdays), will highligh the recently-released book, Imagine: How Creativity Worksby Jonah Lehrer (HMH, 2012). From Bob Dylan’s lyrics to the Swiffer Mop, you will be amazed at some of the things that come from this arcane force we call creativity. Stay Tuned.
Thank you for sharing this beautiful story! It gives me much hope! Our almost 3 year old has made great progress but we have a way to go yet. We’re always telling ourselves it’s a marathon not a sprint.
You are most welcome, Beth! Yes, it really is a marathon–keep working, “training,” and before long, you all will be at the finish line. Best of luck to your little one!