Childhood Apraxia of Speech: What the hell is that?

About three and half years ago, my son was diagnosed with "verbal dyspraxia." The speech therapist we were seeing at the time was lackluster, to say the least. She drilled with my then 4-year-old over and over again. She had no personality, she didn't even try to engage with him, and she never even considered adapting her methods to fit his needs.

I used to have to drag him--literally--to those appointments. After six months of that, I got fed up, to say the least. So I fired her. To find a new speech therapist, I turned to the place we all turn these days, the Internet, for guidance. I was (and still am) part of some awesome mom-to-mom groups, both local and national, that address kids with severe speech delays, specifically verbal dyspraxia, or as it's more commonly known, Childhood Apraxia of Speech (typically shortened to either CAS or just apraxia).

When Jack was first diagnosed, I went into denial mode first. "Oh, it's not really that; his scores were borderline. He just needs a diagnosis so insurance will cover."

But denial or not, he needed speech therapy, so I got a recommendation from one of those local mom-to-mom groups and found the best SLP we've ever worked with (and there have been several).

She confirmed the diagnosis of apraxia, and I think that was when I started to actually believe it.

So the question is what is apraxia?

Apraxia is a neurological disorder that effects the complex motor planning that produces speech. Let's break that down, shall we? Neurological refers to the way the brain functions. Motor planning is the response of the muscles to the brain (so the brain says, "Hey, arm, lift up and wave around," and your muscles are all, "Yeah, okay, we can do that." And, bam, your arm is in the air.) And speech is spoken communication (note: speech is separate from language).

So put that all together and what do you get? Apraxia is a disorder in which the brain is unable to properly control and direct the muscles of the tongue, jaw and mouth; the result is a reduced ability to communicate verbally.

Apraxia is one of those odd disorders that is marked by inconsistency. One of the things I remember hearing early is that the speech pattern errors Jack was making were "consistently inconsistent." So he'd always make errors in a sound he was trying to produce, but they weren't always the same errors. They also sometimes gain words and then lose them again. For example, once when he was about 2, he said the word "apple" perfectly and in context (my husband was eating an apple). He never said it again until after age 4 when we started with our current SLP.

Defining CAS can be difficult. Our first SLP (who was also pretty awesome) suspected it after she started working with Jack, but he was too young to make a diagnosis at that point. Why does age matter? Because some of the speech pattern errors that mark apraxia are also age appropriate in a very young child. If a child ages, but his or her speech does not advance, then it might be a marker of CAS. But there are other, more complex, speech errors that mark the disorder as well. For example, sequencing is really hard for CAS kids. Sequencing is exactly what it sounds like...the order of sounds. Think about a word many kids mispronounce when they are little...'spaghetti' comes to mind. Many kids will say something like 'pasghetti' because the sounds are hard for their little brains to sequence, to put in the right order. But they grow out of it. CAS kids don't grow out of it without specific, targeted speech therapy. (Side note: It's highly unlikely that a CAS kid would have all the sounds required to say "spaghetti" at a young age anyway. [Side side note: As a test, I just asked Jack to say "spaghetti," he dropped the /p/. It took him three times to get it close enough to right.])

These are just a few examples of why CAS is difficult to diagnose. One, the errors are inconsistent; two, at young ages, they can mimic typical speech development. Not to mention, not all SLPs are created equal (a theme this post keeps coming back to). Many of them don't have the necessary training to properly diagnose, let alone treat, CAS.

As in my previous posts, I feel the need to include a disclaimer: I am NOT an SLP. If you think your child may have a speech delay or disorder that requires therapy to overcome, find yourself an SLP. If your kiddo is under 3, start with Birth to Three; sometimes also called Early Intervention. You do not need a doctor's recommendation to call. Parental concern is all you need. If your child is in a school system, you can get speech services through the school. You'll need an IEP and you'll need to be a strong, forceful advocate for your kid. Apraxia needs a very specific type of therapy and it needs to adapt. It's not one size fits all. In addition, if you suspect CAS, click on over to CASANA to get some basic starting information.

It's been a long hard road to get Jack's speech to where it is now. Now he's understandable almost all of the time, but it's clear pretty quickly to anyone who listens to him that he has a speech disorder. So even though it's greatly improved and he's intelligible, there's still no hiding his apraxia. And we still see that same fantastic speech therapist three times a week.

As I said above, not all speech therapists are created equally. Ours is well-versed in apraxia. She keeps herself up to date with webinars, conferences and the latest research. Whenever she finds something that she thinks will help my son, she implements it immediately. If it doesn't work, she ditches the approach. She uses evidence-based approaches, but also recognizes that Jack is a unique individual and what works with one apraxic kid won't necessarily work with another.

(As a side note, here's something funny. He's turning into a little speech therapist on his own. I just heard him correct his brother's pronunciation of the word "them." He said, "It's them, with a /th/ not dem.")

From our very first visit, Jack's speech therapist met him where he was instead of demanding he met her expectations. So when he was shy and wanted to get down on the floor to play, she got down on the floor with him. When she sees that he's a little extra sensory seeking, she provides games that include movement or other sensory input. She has constantly adapted her approach to keep up with his changing needs. In other words, she takes a child-centered approach that ultimately leads to him having fun while doing work. And it is work.

Imagine the thing that's hardest in the world for you. Now imagine you have a one-on-one class three times a week to help you improve that hardest thing. It's a pretty demanding thing to ask of a 7-year-old. But time and again, they come out of the session and the SLP tells me, "He did great!" And he does great because she helps him do great.

There is a chance that his apraxia will never fully resolve. He may always speak with an impairment. But that doesn't mean that it will hold him back. He's smart, funny, kind and so full of life and energy. He's an amazing kid, and I'm so lucky to be on his team.