May is apraxia awareness month.
I get that you are rolling your eyes right now since there seems to be some new thing we are supposed to be “aware” of all the time according to Facebook and Snapchat filters. This one though? Most people haven’t got a clue about it. I had no idea such a thing existed until four months ago when my daughter’s speech therapist suggested she may have it, so I am guessing it is new to many people.
Apraxia of speech (AOS) is a neurologically-based 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. Individuals with AOS have difficulty connecting speech messages from the brain to the mouth.
Yeah, I know that definition is a lot to wrap your mind around. It doesn’t give a very practical picture of what apraxia is. So what does it truly look like to parent a child with apraxia?
Having a child with apraxia means frequently hearing, “She’ll talk when she’s ready,” “It’s because she is the baby and everyone talks for her,” and “Someday you will wish she didn’t talk so much!” Then having an internal debate about whether or not those things are true.
It is going to speech therapy, trying to get more speech therapy, and feeling like your daily interactions become continuous speech therapy.
It looks like a naughty temper tantrum that is actually an expression of pure frustration over not being able to communicate.
It looks like pointing, gesturing, pushing, face-grabbing, hand-pulling, and hitting in place of words.
Parenting a child with apraxia requires standing firm in expecting your child to attempt speaking to get what she wants, even when you already know what she is trying to tell you by pointing.
It is a snail-paced rollercoaster of plodding improvements mixed with sanity-testing regression. For instance, cheering about the change from “gog” to “dog” and practicing again two weeks later without letting your disappointment show when that word reverts to “gog” again.
Being the mom of a child with apraxia means endless hours researching and learning ways to help your child, like visual cueing, which uses hand motions to show how the mouth moves to produce certain words and helps the child’s brain send the signal to say it.
And once you learn and implement it all, it is about noticing your child is on the verge of shut-down mode before you push quite that far.
Having a child with apraxia means trying so hard to squash your natural inclination to say, “What?” when you don’t understand your child’s words, so you don’t have to see that sad slumped-shoulder, head-hanging look of defeat.
It looks like other children, who know your child, running away and crying to their moms because they have previously experienced your child’s way of communicating physically, rather than verbally.
Having a child with apraxia is getting questioning looks from strangers because your child, who appears plenty old enough to talk, blankly stares when asked their name or age because she is self-conscious about people not understanding her speech. It is explaining to them she isn’t, “really big for two,” but instead, “she is four with a motor-planning disorder.” Also, “No, she isn’t deaf, and yes, I am sure. We’ve checked on that.”
It also means the terrifying prospect that you likely have more diagnoses coming your child’s way as she grows because a child with one neurological difference is much more likely to have another.
On the other hand, it is realizing that in the broad scope of special needs, apraxia is a fairly minor one and reminding yourself to suck it up and have gratitude.
But having a child with apraxia also means misty-eyed joy about each new speech development. You know the feeling of hearing “mama” for the first time? It’s just like that when “nake” becomes “ssssssss-nake,” when a two-word combination is first uttered, a three-word sequence is spoken, a whole sentence, and each new sentence after that. It means the first time giving a simple visual cue causes “me carry” to become “I want carried,” it is shocking, exciting, and encouraging.
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