"Ever know just what you want to say...but can't find the words? Welcome to my world"
The quote above was my favorite find of the day, the first Apraxia Awareness Day. It's sentiments I can't even begin to fathom. To know what you want to communicate, to desperately try, and fail. To watch a look of enthusiasm fade to one of disappointment. Yet, with extreme determination, she/he/they keep trying.
As I type staring at this smiling little girl, I see how far we have come and am reminded of how much farther we have to go. This journey is not for the faint at heart and though we may have the privilege of accompanying E on this journey, it is hers. I can be here to fight with her and for her, to encourage and love her, and walk along side her, but I can't do what mommies are supposed to do, I can't make it all better.
Most of you reading this blog post know us, you know our family, you are our family, today though I came to the realization that doesn't necessarily mean you know about Childhood Apraxia of Speech. This was painfully demonstrated to me by my 7 year old who simply stated, "it is just when you are old enough to talk, but just don't know how." So this blog post is dedicated to awareness, that all who read it may have a better understanding of CAS.
Childhood Apraxia of Speech is a motor speech disorder neurological in origin. Specifically effected is a child's ability to plan and coordinate the motor movements necessary for speech. It has nothing to do with intelligence. They know what they want to say, they just cannot get their mouth to cooperate. Take the word eat for example, say it. Think about where your tongue and lips are, the shape your mouth makes. Now what if you had to think about each of those individual movements before you could make them. Then what happens when your brain betrays you? Even after all that effort you only were able to get the ē sound out. "I want to eat," suddenly becomes a monumental task and comes out sounding something like ŭ ē. Not understood by anyone around you, you try again. To no avail you now begin to point and gesture. You try again and again and finally you are able to get your point across. Now replay this scenario over and over again for every word that you said today. The most amazing thing to me is that some how through the tears and frustration there are these beautiful resilient determined little people who wipe the tears away smile, and try again. These kiddos spend countless hours in speech and occupational therapy and never give up.
To learn more about Childhood Apraxia of Speech please go to http://www.apraxia-kids.org
To see some of the many faces of CAS please follow this link http://share.snacktools.com/FDE55758B7A/ptmlg5af