Let's Talk About Apraxia

Medium Spawn said a complete sentence a couple of nights ago at dinner. "I want ice cream." Normally, I doubt anyone would bat an eye if their three-year-old announced that he wanted ice cream, but for Medium Spawn it was an achievement that made both the Missus and I cry some happy tears- because every word represents a step toward him finding his voice and speaking out loud the way we know he wants to. That's apraxia.

I don't really know how to describe his personality-- he's always been a little...  laid back isn't exactly the right word. He didn't really crawl and he didn't really start walking until we gave him a little push and started encouraging him. Once he saw the point of walking and how fast he could go places, it was fine- and that seemed to be his personality. He didn't want to do if he didn't see the point of it. His speaking seemed to be heading the same way, but last fall we brought the Early Access people out for an evaluation and they started working with him and doing some speech therapy. By the time he turned three, he aged out and they had no reason to suspect a disability at that point. Everything seemed to be heading in the right direction, but... he still wasn't talking.

The Missus and I knew his comprehension was right where it should be. We became convinced that he thought he was talking just fine. But... still no actual talking, so we contacted a local agency and took him in for an evaluation and after forty-five minutes or so, the therapist turned to me and said,

"Have you ever heard of apraxia of speech?"

I, of course, said no, but the sense of relief that flooded through me as she explained it was incredible. Up until that moment, we didn't really know what the problem was. We didn't know why he wasn't talking we just knew that he wasn't-- knowing that it has a name, that you're not crazy, it's an actual thing was- gratifying isn't the right word. It's sort of a struggle to describe this, because I don't want to make it sound like I felt happy about this, but it's sort of like going from the fear of the unknown to the fear of the known, if that makes sense? If you don't know what's wrong- with you or your kiddo in this case, your mind tends to run to a hundred million possibilities all of them unpleasant. Putting a name on the problem coalesces things. You can educate yourself on what it is. You can learn what the prognosis is, long term. You can figure out what to do.

Wikipedia defines it this way:
Apraxia of speech (AOS) is an acquired oral motor speech disorder affecting an individual's ability to translate conscious speech plans into motor plans, which results in limited and difficult speech ability.
That's a pretty textbook, complicated way of explaining it- but what's blown my mind about this journey and learning about this condition so far is that speech is incredibly complex. We don't think about it that way, because for most of us, the process is automatic. But break it down a little: let's say you want some ice cream. The thought happens in your head and then you have to send that thought to your vocal cords and move the muscles on your mouth to form the words- all in all, just speaking requires the coordination of more than seventy muscles and body parts.* That last fact blew my mind a little bit- but then again, for most of us speech is something that we take for granted. It's just automatic for us. We don't think about it- but it's actually one of the most complex things we do.

Now, in a system that complex, imagine if one part of that system is out of whack. Imagine the frustration you must feel of knowing what you want to say and not being able to say it- or imagine thinking that you're saying it and not having people understand you.

We've got Medium Spawn in speech therapy. We've got a communication device we're trying out at the moment to see if it can help him speak more effectively. In the fall, he'll be going to pre-school. We've got a plan and we're working on it and we've already seen so much progress. In January, I couldn't have imagined him asking for ice cream- or speaking a complete sentence. But two days ago at dinner, he asked for ice cream. Maybe people who don't know him wouldn't have understood it- it wasn't the clearest sentence in the world, but we all knew exactly what he was saying.

And when it comes to apraxia, you can't ask for much better than that.

(May is Apraxia Awareness Month, so if you want more information on apraxia and what it is check out: https://www.apraxia-kids.org/ It can be scary hearing that diagnosis for the first time and not really knowing what the heck it is- but knowledge is power and there's plenty of knowledge out there. There are plenty of resources and support groups out there if you need them.)

*I'm working my way through Speaking Of Apraxia: A Parents' Guide To Childhood Apraxia of Speech by Leslie A. Lindsey. This particular fact is found on page 21 along with a lot more detail on the fascinating complexities of speech.

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