Family, Marriage

Apraxia Awareness Day

 

Mae ChillingYou might not know this, but today is Apraxia Awareness Day.

As I thought about what I’d write for this post, I longed for a time when I was unaware of Apraxia. There was a time in my life when I thought that children were born, they cooed, they gurgled, eventually busted out with some random word, and then, like a train picking up speed, words came spilling out of them.

My older son talks so much that I occasionally pretend to be lost when we are in the car so that I can demand silence to concentrate on finding our way — a trick that I learned from my mother who did this to defend herself against my endless chatter.

When I thought of “speech issues,” like most people, I thought of lisps or stutters. Or, I assumed that if someone couldn’t formulate words, it was due to malfunctioning equipment, maybe a voice box that didn’t work or a misplaced tongue.

In college, the father of one of my closest friends had a massive stroke and was left with Aphasia.  He could no longer speak, except for a few choice curse words.  It was awful. The thought of him imprisoned in his own body made me sad for him, his family and all that he had lost.

It wasn’t until some 15 years later that I would meet Apraxia and truly understand how  devastating it can be for a human being to be robbed of words. My daughter Mae is living with Apraxia of Speech.

When I met my daughter, she was already walking. We adopted her just after her second birthday. I knew the first time I looked at her that this was going to be a bumpy ride.  She made no real sounds for the first six months we had her. She put nothing in her mouth, and rarely, if ever, pointed.  All of these things I eagerly wrote off as a result of her time in the orphanage. Institutional affects. She was in so many other ways normal. She looks normal. She is, in fact, beautiful   She jumps, she skips, she runs, she can do the monkey bars, and she laughs when things are funny. She just doesn’t speak.

Later, when we got through the hours of tears and testing to finally understand that she was Apraxic, that the part of her brain that manufactured words and the part of her brain that processed them for production and moved her mouth did not communicate, that was when we started to become aware.

If most speech disorders are lisps and stutters than most of the therapists we encountered in the early days were equipped for that.  They had no idea how to handle my daughter, it was like pulling a line cook out of McDonald’s and asking them to be lead chef at The French Laundry. They would hold up pictures of pigs in front of her and simply repeat the word “pig” over and over and over again until she or I would start to cry tears of boredom and exhaustion.  It was only several years in that we were introduced to the therapies and very talented people who could help.  They would touch her face, coaxing sound out of her mouth in small chunks and reward her efforts with incredible enthusiasm.

The thing that you can’t appreciate unless you have a special needs child with a condition like Apraxia of Speech is how much we can adapt and normalize things.  Today, when I see a six year old girl speaking I am in awe. I forget that they do that, because mine does not.

Mine points, she gestures, she solves problems herself, she gets frustrated, she loses interest. If she has thoughts about the weather I have never heard them. She’s never told me how her day was or asked how mine went. I do know that she loves peanut butter and hates jeans. She is not without thoughts or opinions. She has tons of both. She just can’t communicate them the way most people expect her to.

She has made progress, but it’s slow.  It breaks my heart when someone says “hi” to her, and ten minutes later I hear her force out her own version of a greeting.  It takes so much effort and the world has moved on.

I am never unaware of Apraxia. It sleeps in my bed at night and joins us for all our meals.  It is the boogeyman in the closet and a common scapegoat for all our other fears. It is also something that so few people understand. The more aware our friends and neighbors become the more they understand what she needs, what we need.

No individual child is Autistic or Apraxic.  Their whole family is Autistic or Apraxic, as is their community. For as long as one child doesn’t have access to the right tools and therapies, we are all losing.  A person without a voice lives on a planet alone. We owe it to our kids and each other to do everything we can to connect these kids to their voices and meet them where they are.

My daughter is incredible and I love her beyond imagining, and we will continue to wrestle with Apraxia. Someday, I plan to have a conversation with my daughter.  In my wildest dreams I imagine telling her we are lost and she has to be quiet so I can concentrate… maybe, someday.