Tag Archives: apraxia

A Lessening Weight

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I’m going to be writing a little this week about where we are now headed with Little K and his special needs, so I wanted to repost this for a little background on what his Apraxia is looking like after 2 years of hard work.  This was originally posted on Rocky Parenting

“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 23 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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Defining Special

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Defining Special

The label special needs really makes me cringe.  Special needs children have cognitive disabilities, physical disabilities, things that change the way their worlds work and the way everyone around them reacts.  Special needs children have lifelong problems accompanied by sadness and stress for the people who love them.

It took me a long time to admit that I have a special needs child.  And it changed my perspective, my definition of what special needs really means.  It doesn’t have to be dramatic, but it is a different path from the one we imagine.  Of course all children have unique needs, and we mold our lives to meet the different needs of our individual children.  But it usually follows at least a kind of predictable pattern with typical children.  With children who have special needs, we have to redefine the pattern.  And we have to remake the mold we’ve been using  with our other children.

When Little K was diagnosed with developmental apraxia last year, I was a little…destroyed.  And then when I did accept the reality of his speech needs, I closed the door there.  I assumed his obvious speech differences were the extent of his disorder, of his tricky neurological development.  But as he grows into a complete little person and we sort through his frustrations, his sensitivities and additional needs are impossible to ignore.

Neuro pathways are so incredibly complex and intricate that it only makes sense that Little K’s neurological differences would not begin and end with speech sounds.  His sensitivity to noise, his anxiety when faced with strangers and new situations, even his intensely terrified reaction to having band-aids on his skin – these have to be connected to his unique neurological structure.  And they are one more doorway we need to walk through in order to embrace and understand his differences.  His special needs.

I don’t want to define Little K by his needs, but I have to acknowledge them in order to understand his world.  In order to help him understand it, and especially help him understand why it is so stressful sometimes.  If that means skipping a visit to out-of-state family at Thanksgiving because an overwhelming month has caused him to regress in multiple areas, or if it means rejecting library story time – that absolute requirement of good mothering – because he freaks out when he is expected to keep up with actions and simultaneous singing in a group, then we’ll embrace that, too.  Because this life of ours is his, too, and we absolutely have to make him a special space in it, unpredictable needs and all.

Face to Face with Little K

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Nearly two years ago, I wrote one of my first blog posts about Little K and our difficulty bonding during my postpartum depression and what I thought at the time was his collicky nature.  I haven’t looked at the post in a long time, and reading it now makes it clear just how far K and I have come.  It’s honestly a little unreal.  But it’s also clear how much work we’ve all put into getting to know him, and how much work he’s put into letting us inside his fragile little shell.

Little K has never spent a night sleeping in my arms or in my bed.  Unlike his brother, who would spend every night wrapped around me to this day, K wanted his space.  He would nurse and then scream, but never would he just settle into sleep at night with me.  I longed for his warm little body against me, his soft baby breath on my arm.  But he wrapped himself instead in his solitary bubble.  At times it was nice to have a baby I could set down to nap by himself, nice to roll over whenever I wanted in my own bed because there was no child in there to worry about.  And although I worried and took it as a personal failure, I kept reaching out while giving K the space to decide when he would reach back.

And it happened, when I least expected it to.  In a hotel room on the ocean in San Diego, after a long August day at the beach, he asked me to lay between him and N in their bed.  He grabbed my face in both of his sweet little hands, turned my head to face him, and said, “Mama, give big  hug and sleep cozy me.  I wuv you.”  And then he fell asleep, both hands still resting on my cheeks and a smile on his face.  Never have I seen something so amazingly beautiful, or been given something so intimate as an invitation into Little K’s perfect space.

So today, we are here:

IMG_6090Nose to nose, a still rare but increasingly less so naptime, snuggled up as close to Mama as he can get, with one little fist relaxed on my chest and his sweaty little head soft on my shoulder.  No arching away, no “go-way, Mama, I sleepy,” as he tells me from his crib on many days.  Today he is a different child, and I’ve been given access to his world.  He’ll lean comfortably on me to read a book, or rub my hand when we play a game.  He’ll collapse tiredly in my arms or his dad’s when he’s exhausted, and he’ll take kisses and back rubs when he’s hurt.  He wants the love, and he offers it in return enthusiastically.  My Little K – he’s still so hesitant to widen that circle, but I’m just thankful to be one of the ones he’s letting inside.

Push

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When a child talks, his brain tells his diaphragm to push air up and out.  It tells the muscles in his mouth to contract or loosen into a particular form, and it tells his tongue to move to the corresponding position.  It tells the muscles in the back of his throat to push air out and the vocal chords to vibrate accordingly.  The brain does all of this simultaneously, while also directing thoughts that make the resulting sounds string together to communicate meaning.

Only, sometimes, for some kids, it doesn’t.  Sometimes, the little boy trying to talk has a thought, an idea that he wants to express, and the systems that so seamlessly work together for most of us just flat-out fail him.  And he has to work at it, day after day after day, just to get the respiration to coordinate with the muscles to coordinate with the thought to produce the right sound.  And then do all of that over again to make the sound turn into a word turn into a sentence.

It’s exhausting.

To watch, to help with.  I can’t even imagine how exhausting it must be to do.  It’s so goddamn hard just to watch K struggle with what is so deeply instinctual to the rest of us.  I know I take for granted how easily I can open my mouth and spew out thoughts without pausing to consciously remember how to do it.  And his brother N is a born narrator who never thinks twice before an impressively fluent five-minute monologue about volcanoes or fire boots.

But for K, every sound that makes up every word has to be consciously produced.  During his speech therapy today, he worked a solid twenty minutes practicing asking for colored bugs I had in a bag, and what he has gained from the “uh” and “mmm” sounds that constituted most of his speech six months ago is amazing.  He can put two and three words together now, and at times he doesn’t have to pause between the two to start the diaphragm process all over again to push the next word out.

But after twenty minutes of practicing the production, articulation, and fluency of a few short phrases, he had reached saturation.  He put his little hands to his face and rubbed his eyes , like he was just so worn out from it all.  And there is so much still ahead, it’s a small wonder that sweet little boy doesn’t just close his eyes and stop trying sooner because the work we have left to do seems so daunting.