Guest Post: “Apraxia…You just gotta practice!”

Hey, y’all!  After a solid month in our new home, the Internet installation guy finally came today and reconnected us to the outside world!  I’m so glad to be back and promise I can’t wait to get new posts out to you as quickly as possible. 

Back in May, Leslie Lindsay contacted me about writing a guest post for Say What, Y’all?  I was excited to hear what she had to say and now that I’m back online, I’m happy to share Leslie’s post with y’all.  I have to tell you that while I don’t know Leslie and I haven’t read her book (it’s on my to-read list!), her story is very familiar to me. 

In 2007, I met one of the single most amazing families I have ever met.  Ian and his mom came to me when Ian was just 3 years old.  He had been receiving early intervention services, but was still very limited in his verbalizations.  After working with him for a short while, I began to realize that Ian had CAS (Childhood Apraxia of Speech).  I shared my thoughts with his mom and she ran with it.  She researched and read everything she could on Apraxia.  She asked questions that I had to research before I could venture to answer.  She began giving him Omega-3 supplements and working with him on his speech every day.  She went so far as to contact Nancy Kaufman and ask questions.  (SLP friends – wouldn’t you just LOVE to have a whole caseload of families like this???)  I only had the blessing of working with Ian (and his awesome family) for one year, but saw progress like I’ve never seen before or since.  Now, almost 5 years later, his mom tells me that he no longer qualifies for therapy.  I keep a drawing of Ian’s on the wall in front of my desk to remind me why I do what I do.

Below, Leslie tells a similar story of her daughter Kate…

“Apraxia…You just gotta practice!”

by:  Leslie Lindsay

I am thrilled to have the opportunity to be 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.”

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 2^nd 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 on 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.

About the author:

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.

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