By Leslie Lindsay
Happy First Day of Summer!! Yep, it’s offical, today at 3:34pm.
I was recently approached by a communication disorders graduate student at Southern Connecticut State University who was working on an assignment in examining clinical approaches designed for various communication disorders…and she choose CAS and me to connect with. It was an honor to answer her questions and to shed a little light on this communication disorder that has so become a part of our life.
Thought you could benefit from it a bit, too. Here goes…
E.S.: When did you discover your daughter has CAS? What were some of the characteristics of CAS that you noticed your daughter possessed?
Leslie Lindsay: When we gazed at our newborn baby girl, everything about her was perfect. The flawless creamy complexion, the tuft of red hair, and the denim blue eyes. Every other parent would tell you the same about their child; that they are stunningly perfect. And they are. We all want perfection. And most of the time, we get just that. But none of us are completely perfect. When Kate didn’t say her first word “on time,” we were a little concerned. When mothers from my child birth class (who still met up regularly), boasted that their child said, “elephant,” or called the dog by name, I cringed a little inside. Kate wasn’t even saying “mama.” But there was a brightness in her eyes, a curiosity. I knew she had ideas, I knew things were connecting in her world, she just couldn’t get them out.
It was our pediatrician who suggested there might be something more at play. We shrugged our shoulders in her sterile exam room, the one with a string of babies lined up, their naked bottoms various colors of ivory, cocoa, and peach. We decided not to pursue any action for her speech concerns at 1-year, figuring she would ‘catch-up,’ as so many children did. She was a late-bloomer, that’s all. The next few months progressed with mommy-and-me outings, play dates, baby swimming lessons, chunky book reading, and everything else of early toddlerhood. Still, no words. Until the first ‘hi’ emerged, along with a giant smile–hers and mine. And then nothing. For a long time. In fact, even ‘hi,’ became less often used. I ached to hear ‘mama,’ but finally, the second word, ‘ball’ appeared when Kate was about 21 months old. It was a challenging word for her, but she was enamored with balls. And Papa, who got her to say it.
Kate knew the rhythm of language. We had been reading to her from the day she came home from the hospital. We talked as we did things around the house. “Mommy’s going to change your diaper now…time to eat…oooh, what color do you see?” She knew where things were in the house. I could tell her we were going to ‘go bye-bye’ and she’d race to the back door, sometimes grabbing her shoes beforehand. And she’s make approximations, too. She’d point at the correct object, or gesture when she needed something. Still, she wasn’t able to get the words out; it was like she was perpetually tongue-tied.
At 30 months, she was finally diagnosed with CAS. I say “finally,” like we waited an eternity, when in reality, she was still young; she would be okay. It felt like a final relief just knowing what was tripping her up.
E.S.: Were you familiar with CAS before your daughter was diagnosed?
Leslie Lindsay: Not at all. I had worked with kids in my job as a child/adolescent psychiatric R.N. Before that, I was well-versed in child development, psychology, and being around kids as a babysitter all through high school and college. Never once had I heard anyone talk about childhood apraxia of speech. In one of my clinical rotations in nursing school, I learned of dyspraxia, uncoordinated movements of the body and mouth. I knew some stroke patients needed rehabilitation following a CVA. I knew of speech and language loss from a TBI and I knew of Broca’s aphasia. Still, I had not heard of childhood apraxia of speech.
E.S.: Which resources were most helpful for you when you first began researching CAS? Which resources do you call upon most now?
Leslie Lindsay: At the time, I was told to *not* go home and Google apraxia, “It will just scare you.” Well, as you can imagine, that scared me just the same! The diagnosing SLP must have seen my eyes grow as wide as saucers because she amended her statement, “Of course, you want to know what’s going on and I don’t blame you; I’d recommend a website called Apraxia-KIDS.org.”
I honestly don’t think I even bothered looking them up right away; I needed to sit with the information that my daughter was “quite delayed in her speech and language patterns,” requiring “highly intensive therapy” for her to match her peers. Eventually I did venture over to Apraxia-KIDS and contrary to what I was advised, I freaked out a little there, anyway. There were questions posted to a listserv about future development, reading delays, school concerns, etc. that pretty much blew me away. There were parents who still struggled with their 8,9,10 year old children. Mine was just 2.6 years old! Don’t get me wrong: there’s definitely some value in Apraxia-KIDS; there’s something to be said about the community mentality–“we’re all in this together.”
Since then, there have been other groups that have sprouted up: CHERUB, Speech Train, and countless Facebook Groups that weren’t exactly there when we were first embarking on the CAS journey.
ASHA also has a good deal of information on CAS and that’s probably where I’d turn now, though Kate’s apraxia has progressed so much that we don’t feel we need the resources so much any longer.
E.S.: As a parent of a child with CAS, what has surprised you about current research addressing CAS? What direction would you like future research to take?
Leslie Lindsay: Everything! In some ways, I was surprised to learn that CAS is a neuromotor speech disorder and that sometimes, kids with CAS have more neurological concerns; a package deal, if you will. They may have AD/HD in addition to CAS, or perhaps Down’s syndrome or autism. Or even all of the above. In our case, we are dealing with both CAS and AD/HD, which makes for a highly active, inventive, and determined young lady!
E.S.: How has the nature of your daughter’s communication changed with intervention?
Leslie Lindsay: Greatly! Well-meaning others ensured us that Kate would eventually “grow out” of her apraxia. Still others claimed she didn’t need to talk because she had such attentive (coddling?) parents. Even still, we heard that we weren’t doing all we could for her–or that was how it was perceived–that we needed to read more to her, dance with her (that movement helped speech), talk with her more. We were doing all of those things, and still, nothing in the way of communication. I guess my point here is, if you suspect a problem, listen to your gut. Only a qualified SLP can make the diagnosis. Only they can provide therapy. Listen to them. Go to therapy. Go as much as your insurance or pocketbook,and time will allow. Kids with apraxia do not simply “grow out of it.”
E.S.: Which interventions have been most effective for your child?
Leslie Lindsay: Many will swear by PROMPT and that might very well work for them. Our therapist used a variety of approaches, including PROMPT, Cued Language, Sign Language (ASL), and movement. I firmly believe it was the movement (occupational therapy/OT) piece that unlocked Kate’s voice. Plus, we worked tirelessly with her at home, working speech practice into our daily routine so it felt natural and accessible.
E.S. What are some coping strategies she has adopted when communication becomes difficult?
Leslie Lindsay: Kate is full of ideas and she wants to express them! When she was younger, it was the “writing center” in preschool where she would draw, craft, create, and everything in between. As she got a little older, she became more active in her play instead of the docile ‘tea party’ style of play so typical of little girls and was a bit more ‘rough and tumble,’ perhaps more in line with how little boys play. Around the same time, she would gesture or bring me something she wanted to do. I still chuckle at the memory of her bringing me a swimming suit in the dead of winter and wanting to go to the pool. I let her wear the suit around the house that day, and she gleefully pretended to swim on the family room floor.
E.S.: What are some suggestions you’d like to make for parents of children with CAS? What would like future SLPs to know about treating children with CAS?
Leslie Lindsay: Parents--know that as serious as apraxia seems, it will improve. It takes years of therapy and a multitude of patience on your part and your child’s but you will all get there. Also, know that you are an important advocate for your child. Since she can’t speak for herself, you have to, but do so in a supportive, encouraging manner. You’re an integral part of the team, a partner with your child’s SLP.
SLPs–we want what’s best for our child. We want to help in all ways possible. We want to know what you like about our child, what her potential is, how you see her progressing. We want to know her treatment goals and how she is meeting them. Finally, we want to know if we are doing the right things.
For more information about Leslie, her work with apraxia, or to follow on social media, please see:
- Leslie’s main website where she hosts bestselling and debut authors, and occasionally shares her own fiction
- Follow her on Facebook where she posts about Apraxia/Child Psychology/Parenting/Literacy
- Twitter: @LeslieLindsay1
- For more information, or to purchase SPEAKING OF APRAXIA (Woodbine House, 2012), click here.
Leslie Lindsay is the author of Speaking of Apraxia: A Parent’s Guide to Childhood Apraxia of Speech (2012), Woodbine House, an award finalist for both Reader’s Choice and ForeWord Review, and 2nd place winner of the Walter Williams Award for Excellence in Non-fiction. A former R.N. at the Mayo Clinic, Leslie has worked extensively with children and has a background in psychiatry. She has participated in several fiction workshops, most recently at The University of Wisconsin—Madison. In addition, she contributes to two critique groups, and works closely with a critique partner. She lives in Chicagoland with her husband, two young daughters, and a basset puppy.