Imagine Being a Parent of a Child with Apraxia of Speech (CAS)

Guest post By: Leslie Lindsay, R.N., B.S.N. and a mother

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, apraxia“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?

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.

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.

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.

About the Author:

Leslie LindsayLeslie 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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9 replies
  1. christinaambs@yahoo.com'
    Christina says:

    Thank you for this article. As a parent to two children with CAS it is a nice article to share with friends and family who really don’t grasp what is going on with my children.

    Reply
    • julieallen0688@yahoo.com'
      Julie says:

      hi! it’s been a while since you commented but I was wondering you said you have 2 children with CAS? My son also has CAS and I have often wondered if there was a link in siblings. I wonder if is his younger sibling is likely to have it as well? My older child doesn’t but I have looked for this information all over and never found any research on the topic. If the question is too personal or your uncomfortable answering I absolutely understand just very curious.

      Reply
  2. Blonde2k3@yahoo.com'
    Lisa says:

    As a parent of a child who had this, I really wish someone had told me more. I felt like I failed as a mother. My son had other speech issues, as well as learning disabilities but we are getting past it.

    Reply
  3. sedwards4574@gmail.com'
    Steve Edwards says:

    Ma’am, thank you so much for this information. I just learned yesterday that my 3 1/2 year old grandson may have CAS. I am trying to determine what I might do to help both my grandson and my son and his wife. This is complicated, however, by the fact that I don’t see any of them regularly as my son is in the Air Force at Joint Base Andrews in Maryland. They are having to deal with this alone but I think they are eligible to use the Johns Hopkins healthcare system, which may make a huge difference. As you can probably see by now, I just had to get this off my chest to somebody. One last thing, ma’am: your daughter is absolutely, positively adorable.

    Reply
    • rachelkerr17@hotmail.com'
      Rachel says:

      Bethany

      Good luck, sending you lots of positive thoughts.

      How old was your child when CAS was diagnosed? And are they now having therapy? I have a “just” 2 year old who has had hearing problems (now resolved) but who is really struggling to speak. Learns the odd word but then loses the ability to say it, dribbles massively, often doesn’t attempt speech favouring gestures etc. We are not sure whether it would be too early for CAS to be considered even though it seems to fit.

      Thank you and best wishes for your little one,

      Rachel

      Reply
      • bd_statkey@yahoo.com'
        Bethany says:

        My little one was diagnosed as a 2 year old. We had his hearing checked as a 1 year old, started evaluations as he turned 2. Began therapy at 25 months, after 5 months of therapy with 3 different therapists they sent him to a SLP at children’s to be evaluated again suspecting CAS. We have seen a total of 5 SLPs. It is never too early! Talk to your pediatrician, ask for a referral to begin therapy, keep insurance informed. Let the SLPs know your suspicions and concerns. CAS is not an easy diagnosis and is not common(although it is happening more and more). They may not make an official diagnosis right away cause it is tricky. Either way your child will be receiving therapy which is all you can do with CAS anyways. Patience. Practice. And Prayer.

        Good luck! Do what you think is best! Mama always knows best, I had a lot of people against me at first. My son has blossomed and try’s hard, he still cannot speak well or more than a few words, but he is trying now and that is what counts!

        Reply

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