Apraxia Awareness Day

Apraxia Awareness Day

"Being challenged in life is inevitable, being defeated is optional." ― Roger Crawford

Today is the second annual Apraxia Awareness Day. So what is Childhood Apraxia of Speech (CAS) and why does it matter to me?

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.1

My son CJ, who just turned 7, has CAS. He's happy and healthy (other than having Type 1 Diabetes), but it can be very difficult to understand what he's saying. My wife and I, as well as his sisters, we generally do well enough communicating with him, as we're used to his speech patterns. But if you'd just met him and tried to hold a conversation with him, you might find it challenging.

My Son CJ

CJ was diagnosed in 2010 with Childhood Apraxia of Speech. He was 4 years old.

That's not to say that we always understand him. We have our moments of frustration where he's trying to talk to us, and we just can't make out the words that he's trying to say. It's incredibly frustrating for everybody involved when he says something to us, we repeat it back to him, he rolls his eyes and says, "no" and then repeats himself, we offer up our next best guess... and this goes on for a few minutes. He's my son. He's seven years old. And there are times when he simply can't communicate with me.

Over the years this has raised many concerns for us. We've purchased ID bracelets for fear of losing him in a crowd one day. It's a bit terrifying to think that we might get separated, and he wouldn't be able to say, "Hi, my name is CJ, and I can't find my parents". He's in a different school than his sisters because he's in Special Ed classes due to the Apraxia.

Overall I'm grateful. In spite of the fact that he has to be separated from his sisters and bussed into a different school, he gets the attention that he requires. He's seen by Occupational Therapists and Speech Therapists as part of his routine school week. I do appreciate that.

I'm grateful that this is not a life threatening issue. While it can be difficult to deal with at times, it can be addressed through a combination of therapy and hard work. But his life is not in danger. We have challenges that we face because of his CAS, but others have far greater challenges. I do appreciate that.

But today is Apraxia Awareness Day. It's a day when I see other parents to Apraxic children sharing their stories on Facebook and take comfort in the fact that I'm not alone. It's a day when I can talk about it a little bit and not feel guilty thinking about those who have much more difficult situations to deal with. It's a day when my son does get a little bit of extra but well-deserved recognition for the extra efforts that he has to make all day, every day, in order to simply talk to those around him. And he deserves every single ounce of that recognition, because he is a warrior. Because he fights a fight all day, every day, to do something that most of us commonly take for granted. And most people don't realize that. But he doesn't fight for the recognition. He fights because he must.

If I Could Only Tell You, I Would Say...

http://www.apraxia-kids.org/

This image comes from the Apraxia-KIDS web site. I first saw it a few years ago, when the diagnosis was new to us. I didn't know what to expect, and I didn't really know what to feel. I remember how much reading it for the first time impacted me. It helped me to see things from his perspective and to better understand his frustrations, so that I might better be able to help him through them. It's been a while since I looked at it, but seeing it again today for the first time in probably about a year, its impact hasn't abated any. If anything, it makes me realize once again how strong my son is. How hard he fights every waking moment. How he doesn't get a fraction of the recognition that he deserves for his efforts.

But today... today he should get that recognition. If nothing else he deserves at least that one day a year where he can hold up his chin and puff out his chest and say to everybody around him, "I'm doing it". It's the one day a year where everybody should be aware that my son is so special. Not because he has a disability. But because he silently fights every day of his life and does not let that disability define him.

Charlie Griefer

Charlie Griefer

Just another ghost driving a meat-covered skeleton made from stardust.

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