Finding the Words

By: Kristina Teeter

What Is Childhood Apraxia of Speech and Why Should We Talk About It?

Written by: Kristina Teeter in honor of Apraxia Awareness Day 2016

When I found out that I was pregnant with my first child, I was overjoyed.  There was nothing I wanted more in the world than to be a mommy.  As a little girl playing with my dolls, it was seriously all I dreamed about.  When my daughter made her grand entrance into this world early one summer morning, she instantly rose to princess status.  I remember cradling her in my arms and staring at her sweet face. I couldn’t wait to see her reach her monthly milestones (you know, the ones you read about in the baby books).  So I did what any new mom would do, I waited and I watched (sometimes obsessively).   At about 18 months, I was hit with a big realization: I was waiting and watching and things just weren’t happening. Reese was struggling to meet many of her milestones, especially those pertaining to speech.  She didn’t babble like other babies her age, her sound repertoire was almost non-existent and she didn’t say any words (not even those cute made up ones).  I knew I had to do something.  A family friend advised us to seek assistance through our state early intervention program.  At the advice of our pediatrician we sought the assistance of a pediatric neurologist as well.  After some evaluation, Reese started the Early Steps program and was seen by an early interventionist. Things were going well, but Reese still wasn’t using words to communicate.  At that point we were teamed up with a Speech and Language Pathologist who worked with Reese weekly on her speech and language skills.  Little by little Reese began to imitate sounds.  We were hopeful that she would begin to talk, even if just in single words or short phrases.  We worked on her speech daily, practicing sounds over and over.  By age 3, Reese was finally starting to attempt some words.  She was further evaluated by her SLP and diagnosed with Childhood Apraxia of Speech (CAS).  At the time, I had no idea what Childhood Apraxia of Speech was.  I was simply relieved to have a name to attach to what was causing my baby girl to struggle so much.

CASANA (The Childhood Apraxia of Speech Association of North America) describes Childhood Apraxia of Speech as, “…a motor speech disorder that first becomes apparent as a young child is learning speech.  For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intellgible speech.”

Imagine knowing what you want to say, but not being able to produce the words clearly enough to be understood.  The best way that I have been able to help young children understand apraxia is by sitting them down and playing the game telephone- that childhood game where everyone sits in a circle and a secret message is whispered one by one to each person around the circle.  By the end of the game the message is never what it was intended to be.  That is what it is like to have CAS.  For children with CAS communicating with peers can be an extremely challenging and frustrating task.

Children with CAS benefit most from frequent and intensive speech therapy by an apraxia trained SLP. Many children with CAS attend speech therapy 5 days a week, as well as practice their speech productions at home. Reese is now just shy of 7 years old.  She still receives both school based and private speech therapy.  Speech therapy has simply become a routine part of our lives.

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Celebrating apraxia awareness and practicing speech at home a few years ago.

It is hard to believe sometimes just how long apraxia has been a staple word in our household.  It honestly feels like just yesterday, Reese was diagnosed.  When I think back to that day I can remember how terrified I was and how many questions were racing through my brain.  Would I ever hear my little girl talk?  Would she ever call me mama?  Would she learn to read?  Would she be teased?  The list goes on.  At this point in our journey I can tell you a few things believe with all my heart:

  1. Don’t let anyone put a limit on your child’s capabilities. Early on, Reese’s prognosis included the possibility that she would never speak.  I refused to believe that.  She now speaks in full sentences and reads above grade level despite the speech challenges she still faces.  Oh… and I did finally get to hear her say “mama.”  It is still music to my ears when I hear her say it.
  2. Early Intervention is key!  Seek an evaluation with your state’s early intervention program and find out what resources are available to your child.
  3. When seeking an evaluation and diagnosis make sure the therapist is knowledgeable in apraxia.  Appropriate diagnosis will help you seek of the appropriate type of therapy.  We have been blessed with world’s most amazing speech therapists.  I don’t know where we would be without them.
  4. You are your child’s best advocate.  Nobody knows your child better than you do.  Speak up, don’t be afraid and fight for what you know they need!
  5. Living with a child with apraxia of speech will teach you many things.  The most important thing I have learned is how to listen.  When you have a child that struggles to communicate you learn the value of every facial expression, body movement and vocalization.  You truly learn to listen with your heart!
  6. Be hopeful and believe in yourself as a parent/caregiver.  There are going to be hard days. There are going to be days when you want to quit.  On those days, remember who you are fighting for and put your boxing gloves on!
  7. Teach your child to embrace who they are.  Reese knows that she has apraxia.  She knows where she started and how far she has come.  I want her to know that having apraxia has shaped her into who she is today.

On May 14th we will celebrate Apraxia Awareness Day.  This day means a lot to families affected by Apraxia, because it is a day where we can truly “SPEAK UP” for our little ones that are still working to unlock their voices.  On Apraxia Awareness Day many families wear blue or create blue ribbons with stars to show their support.  Across the United States, families affected apraxia seek out proclamations from their state to honor this special day.  Other activities include sharing apraxia facts and photos of our apraxia stars on social media, fundraisers that support apraxia related programs and educational speeches/talks at schools and clinics.  Apraxia Awareness Day is also a great day to let families know about the Walk for Apraxia.  This year in Florida alone, there are 5 walks planned. The walks raise money that directly supports CASANA’S research and programs, such as I-Pads for Apraxia.  If you want to learn more about apraxia please visit the CASANA webpage at www.apraxia-kids.org.  You will find every resource you need.  If you like social media, you can find the Childhood Apraxia of Speech Association on Facebook, as well as apraxia Facebook groups in both your state and city.  These pages are a great way to connect with other families, ask questions and find resources!

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                                 Reese and Mommy at our first Walk for Apraxia in 2012

 

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Please join me on May 14th to support children that are still searching for their voice!  Let’s speak up for apraxia!!!

13009879_1016540051773199_505321581_o My name is Kristina and I am a working mom of two cutie pies, ages 1 and 6. I currently work as a literacy coach in an elementary school where I hope to ignite the love of reading in each person I meet. In my spare time I love teaching Sunday school, playing with my little ones, watching HGTV, and planning birthday parties for my kids!! I am extremely passionate about educating and advocating for apraxia and autism- two causes near and dear to my heart. The best thing about my life is being a mom!!!

 

 

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