By Leslie Lindsay
(image source: Shutterstock.com)
Over the summer, I was a guest blogger on Haley’s blog, “Say What, Y’all?” Not only do I love the title of her blog, being a former Missourian myself, but I can totally relate to having said this euphemism so many times in my “career” of being an “apraxia mom.” Here it is again for those of you who may have missed it:
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. 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.
Leslie Lindsay is a former child/adolescent psychiatric R.N. at the Mayo Clinic. It is because of her daughter that Leslie wrote the first book designed for parents on this complex neurologically-based motor speech disorder. Speaking of Apraxia: A Parent’s Guide to Childhood Apraxia of Speech(Woodbine House, 2012) is as much as labor of love as it is a resource to help others along their apraxia journey. She lives in Chicagoland with her husband, two daughters, and a basset hound where she writes full-time. She is currently at work on a women’s fiction novel. Follow her blog, www.leslie4kids.wordpress.com
“Practical Parenting with a Twist” in which she writes 5x/week on apraxia, education, parenting, and the writer’s life.
Some of my best memories of this journey are the days Cole has come to school with me. It was encouraged he increase his confidence, and I was allowed to bring him with me to my school. He ate lunch with all the 8th graders and to my surprise, he wasn’t scared and talked up a storm! I truly think the opportunity for him to be involved with my career, coaching and teaching, has helped him become the person he is! He’s not scared, he does not hesitate to speak to anyone and he surely does not give up when people don’t understand him! Those of you just beginning this process, don’t give up! Encourage your child to talk and get him/her involved in as much as possible. Apraxia is a speed bump in life.
At 4 1/2 years old my son is extremely aware of his disability and is NOT ashamed! He holds his head high and he’s proud of himself every day! He understands what’s wrong, knows he must practice and he’s more OK with it than I am! 🙂
What a powerful message! Love those kids–for their abilities, their resilience, and their go get ’em attitude. Cheers! : )