We All Keep Shoveling

“Do you ever forget about K’s apraxia, and then suddenly remember it?” I asked my husband.  “All the time,” he said.  We were standing in the kitchen, watching K dance around to a little ditty that was playing in his head.  On the way home from the store that day, K had said something was “silly,” and I’d remembered suddenly a sign K used to have for silly when he couldn’t verbalize any words.   It was an adorable approximation, and it was his favorite sign.

When K was first diagnosed with Developmental Apraxia 18 months ago, I would never have believed it would become a thing so routine that I’d actually forget he had it.  At first, it was with us all the time – like a weight we’d gotten tangled in had been trailing heavily everywhere we went.  Now, we’ve built speech therapy and sensory accommodations so intricately into our lives that it pervades every aspect while at the same time fading invisibly.  I think that’s the wonder of special needs: they take over your life and your life absorbs them, making everyone reevaluate their plans and add some flexibility.

K continues to make unbelievable gains.  The little boy whose mouth struggled to make a sound other than a scream is right now narrating an entire rescue scene with toy Transformers.  The child who hid his head in my shoulder if a stranger looked at him six months ago told a receptionist last week what he ate for breakfast.   He’s ditched his sign language in favor of trying every new word that comes his way, and he practices with so much patience when the words come out wrong.

His therapist equates speech development for kids with Apraxia to shoveling snow.  You shovel and shovel as you practice those words, and sometimes the neuro-pathway clears up for a while, but there’s always the chance another storm will come and pile more snow on that path you worked so hard to clear.  But you just keep on shoveling, and eventually the path is passable.  Accommodating a developmental disorder requires the same kind of shoveling through frustrations and regressions and circumstances beyond your control.  You never quite stop shoveling, but the snow gets lighter and lighter.

Now, K has such a big vocabulary that I do forget about the days I had to keep looking into the backseat of the car to see what he was saying with his hands.  When I can keep facing forward and driving while he talks, it’s easy to forget how hard his little mouth works to get those sounds out.  Sleepiness and stress catch him by surprise and make him stumble over word after word after word, but my brave little trooper just keeps shoveling until he’s said what he has to say.  In those times we can’t deny his Apraxia, but we stop to sit quietly in the snow while he shuffles words along the path.   To the people in his life who patiently take the time to hear and understand my sweet K, it’s obvious his path is headed somewhere magnificent.

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