Say That Again: Imagine Being a Parent of a Child with Apraxia of Speech (CAS)

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By Leslie Lindsay

[This was  previous post over the summer.  Here it is again if you missed it–or are just now joining us]. 

apraxia.jpg(image source: http://speechtherapyweb.com/ 10.15.12)

At two years old, Kate was a beautiful, energetic, and happy toddler. With the exception of one word—hi—Kate was as quiet as a mouse. We wondered if something was wrong. Even as a baby, Kate rarely babbled and cried; she was beautiful and unique with red hair and bright blue eyes.  She was, in a word, “perfect.” So why were we worried? After all, she could understand everything we said, even the big words.  And what was so wrong with having a quiet, happy toddler? 

But there were times my heart would sink. Gaggles of women who had all been in the same childbirth class a year or so earlier met up for our summer book discussion.  They were chattering about how their children were saying new words every day.  One mother proudly shared, “Oh, Maddie said elephant yesterday at daycare.  I hate that I missed it.”  I pulled my lips into a tight line and let out a sigh.  If only my baby could say, ‘mama’ I thought. 

Fast-forward a year or so.  We learn Kate has Childhood Apraxia of Speech (CAS).  Characterized by a child’s inability to express themselves verbally, CAS is a complex neurologically-based motor speech disorder.  It is serious and requires intense and frequent speech therapy by a licensed speech-language pathologist (SLP).  Part of me was relieved: now we know what to call this “reason” for Kate’s lack of verbal communication. But another part of me was overwhelmed, nervous, and anxious:  now what and why? 

(image source: http://allenkleinedeters.wordpress.com/2011/11/28/do-you-ask-good-questions/)

It was time for me to put on my proactive parenting cape (forget Supermom), this diagnosis called for a little more.  I started gathering any and all information I could on the subject of CAS.  I joined listservs and read old text books on the subject.  I picked my SLP’s brain.  I worked with my daughter at home, in the car, and everywhere in between. I enrolled her in the special education preschool. And she improved. Yet in the meantime, we dealt with so many quizzical looks, unwanted advice, and clueless peers. (image source: http://www.thedoodlegirl.com/illustration-friday/illustration-friday-homage)

Imagine going to the grocery store with your toddler.  The clerk makes small talk with you and your child.  Your child can’t answer when asked, “What’s your name, cutie?”  Instead, she grunts and smiles.  The clerk turns to you, perplexed as if to say, “doesn’t your kid know her name?” 

Try taking your 4-year old to see Santa at the mall.  He can’t tell the big man in red what he wants for Christmas, even though you know he’d love a new bike with training wheels.  Instead, he makes a spinning gesture with his hands and goes vroom, vroom.  Santa chuckles, “Oh, a toy car!”  But you know that’s not it.  So does your son. 

What will you tell the kind, grandmotherly babysitter who tells you, “Oh, don’t worry.  Some kids are just late-to-talk.  She’ll catch up.  Maybe you aren’t reading and singing to her enough?”  Do you go to mommy-and-me classes so she can interact with other kids?” 

How will you know what your child wants when he just stands and points to the top of the shelf at the many items it could be?  You ask, “Do you want the blocks?”  No.  “Do you want the farm book?  Oh, I know…you want your car!”  But, instead he breaks down in tears and walks away. 

toy shelf closet doors
toy shelf closet doors

(image source: muralsbyjane.com)

How does your heart break when you overhear her peers say, “Julia can’t talk.  Let’s not ask her to play with us.” 

What’s a parent to do? 

  • Love and accept your child for who he is.  Of course you didn’t ask for your child to have CAS.  Neither did your child.  Focus on finding the resources your child needs the most—a qualified SLP. 
  • Talk to your child.  Speak with her as though you expect an answer.  Just because she can’t speak back in a way you understand, she understands you.  Make your communication with her matter.
  • Provide opportunities for your child to absorb speech and language. Read to him, study the illustrations; illuminate the details. Point out everything you can about the environment.  “Look at the birds.  Do you see the blue birds?  Beautiful blue birds.  Can you say bird?”
  • Be patient with your child.  Having a child with CAS takes time to remediate.  It’s not over in a matter of a couple of speech therapy sessions.  It can take years to get your child speaking at developmentally-appropriate levels. Talk with your SLP about ways to monitor progress.  It’s all about baby steps. 
  • Be patient with yourself.  Take a deep breath or a give yourself a time-out when you find yourself losing patience.  Allow yourself to do other things besides parent a child with CAS.  It’s important for your mental health.
  • Allow your child to be a “regular” kid.  This may mean “coaching” social play.  You may have to introduce your child to a group of peers, “This is Max.  He’s a fun kid, but he’s still working on his words.  Can he play with you?”
  • Bite your tongue or educate—diplomatically, of course.  When someone asks you about why your child isn’t talking like every other child, you can grin and bear it, or you can simply tell them, “Brooke has Childhood Apraxia of Speech.  She sees an SLP each week.  We’re working on it.”  Most folks don’t need or want more details than that.

Soon, you’ll be hearing things like, “Mom, can I have twelve bucks?” like I did the other day when my daughter with apraxia came home from school one day and wanted to go to Disney on Ice.  You’ll be hearing words and phrases like, “Whatever,” and “I didn’t do it.”  But the most touching of all, is when you hear these precious words: “I love you, mom.”  Imagine being a parent of a child with CAS. 

BioLeslie Lindsay is a former staff R.N. in child and adolescent psychiatry at the Mayo Clinic.  She is the author of “Speaking of Apraxia:  A Parent’s Guide to Childhood Apraxia of Speech,” available from Woodbine House, Inc. in March 2012.  This is the first-ever book written by parents for parents specifically on CAS.  Leslie blogs daily on apraxia, parenting, child development and more at www.leslie4kids.wordpress.com.  She lives in Chicagoland with her two daughters Kate and Kelly, her husband Jim, and a basset hound named Sally where she writes full-time.  Feel free to contact her at leslie_lindsay@hotmail.com

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