Childhood Apraxia of Speech--Our Journey has just begun

For those that have never heard of Apraxia (as many have not), it is a neurological disorder that affects a child's ability to verbally communicate.  It's a motor-planning deficit, which basically means that the part of the brain that tells our mouth to form the thoughts in our head into words is impaired in a way.  I knew almost nothing about CAS prior to my 2 year being diagnosed with it just a few months ago.

I knew from the time that she was about 18 months that she was a little behind in her speech development.  At first, I just thought she was delayed and that she'd eventually catch up.  I told myself that after the new year, if she didn't start developing anymore words that I would call Early Intervention and have her evaluated.  By the time she was 21 months she only had about 7 words (approximations) so EI came and did their evaluation and my concerns became a reality.  According to their evaluation, she was developing beautifully in all areas except for expressive language, therefore qualifying for services.  Yay.  I was hopeful that this would be the answer for her (us) and she would begin speaking.  Not exactly.  The therapist that came to the house was great.  She worked with my daughter and they spent the hour playing productively.  But, nothing was happening.  She still wasn't talking.  We were doing everything they suggested to us.  Labeling, labeling, labeling everything in sight.  We gave her all of her liquids from a straw, we practiced blowing bubbles, we practiced animal sounds, we read books, we played.  We did it all, and no major speech developments were made.

It was frustrating.  It didn't help that all along, I though that there was something else going on with her that EI didn't address.  Why wasn't she talking?  And even more, when she did, it barely ever sounded like a real word--just sounds (approximations).  For example: muh=more, buh=book, dada=daddy, etc.  In addition, she continued to put everything in her mouth.  I was assured that this was "age appropriate" and that it usually resolves itself by age 2.

Nope.  It didn't.  It got worse.  She was biting, hitting, and pinching mainly out of frustration, but also because I suspected there was some oral-sensory things going on too (this typically occurs with children who have CAS).

So what is a parent to do when they have questions and concerns.  You go to Google.  That's where I found information on Childhood Apraxia of Speech and I couldn't believe how many of the indicators that my daughter had.  How had EI missed this?  It made me angry, because I felt like she needed more services than they were offering and now I am going to have to battle for them, and I wasn't sure how to go about doing this.  It's very intimidating for those who've never been in this position, but I had to do what was best for my daughter.

After thinking it through, I decided to take her to a private Speech therapist for an evaluation or basically a second opinion.  They were the ones who confirmed my suspicion of CAS.  We are fortunate enough to have insurance coverage for speech therapy!!!  Such a blessing.

We began therapy and we started to slowly see some development.  They assured me that my decision to bring her in for therapy now rather than later was a wise decision.  They assured me that 2 years old is NOT too young to be diagnosed with CAS.  They assured me that with commitment to speech therapy and practice at home that my daughter will speak.  It will be a long road, but she will talk.

Some days when she's whining and throwing fits because she can't get the words out of her mouth for why she's upset or tell me that she needs something, I feel like I'm in a tunnel and there's no way out.  I feel helpless because I can't figure out what she wants.  It sucks.  You see your beautiful, smart, kind little girl who wants nothing more than to talk to you.  You can see it in her eyes.  She wants to tell you that she's angry or upset.  She wants to tell you what she wants to play or watch on TV.  Some days it's just heartbreaking.

Then there are other days when she works her little butt off at therapy and she is beyond proud of herself.  Then you can see the happiness in her eyes.  The determination and hard work pays off.  I've never in my life seen a child give 100% at something that was so incredibly hard for them to do.  Most people would give up.  Not her.

It's no doubt that my little girl has a long, tough road ahead of her.  But, I know that God is challenging her because he knows she CAN handle this.  I might not have a clue what I'm doing, but I know she's got this.  She's going to teach me things that I never knew.  I am going to be a better parent because of her.  Some days I have to tell myself this in order to keep me going when I want to scream and give up.

This is just a snap shot in our journey with CAS.  There, undoubtedly, will be more to come.  We are learning as we go.

My sweet girl.