Wobbling Toward Grace :: Milestones In Parenting A Neurodivergent Child

Wobbling Toward Grace :: Milestones In Parenting A Neurodivergent Child

We took the kids to the West Baton Rouge Library’s Lego Club a few Fridays ago, and as we were trying to corral them to leave our younger son pointed at the ground and went, “AHHH!”

That’s his way of letting us know he has seen something out of the ordinary – revolting (a cockroach), surprising (a sock or a package of chips his brother has thrown into his visual range), or delightful (an almost-forgotten toy that has disappeared for a while). I followed his pointing finger to a small beige shape in the dark green industrial carpet weave of the library floor.

I squinted at the block and said, “well, let’s pick it up, kiddo, so we can put all the Legos back” … but leaning down, hand outstretched, I realized it was not one of those specialty-shaped, off-colored uni-blocks, but a tooth. Not a Legotooth — a human tooth. His tooth.

“Your tooth fell out!” I gave him a high-five.

We did a happy dance (arms raised, fingers wiggling, knees high, turning in a circle, then putting his hands on the floor and shaking his buns) (yes, you read that correctly — our younger son twerks when he’s happy). He gave me an irrepressible, indescribable grin that says “I’M A BIG KID” and … my heart, y’all.

This is the first of his baby teeth I have held in my palm. The first 2 happened without our being aware a tooth was even loose. One day he came home from school one tooth short, and he didn’t seem aware of a difference so I didn’t cry in front of him. But it’s such a milestone. That first “lost” tooth. That first little pokey window where a still-baby tongue-tip fits and feels all new textures. The second one, too, happened without notice. He probably lost it at school and it fell out on the playground or at lunch and is now part of the ecology of Greater Baton Rouge.

I will never not be sad about those baby teeth, lost to me as his mama.

Lost in the way so many things about having a child with exceptionalities are lost.

Our younger son has Down syndrome. The genetic testing we did because I was a (ahem) “geriatric mother” revealed his chromosomal excess at ten weeks in the womb, but despite our general optimistic realism about raising children we were in denial until the day of his birth, when we saw his eyes — shaped ever so slightly like almonds, about 1/2 centimeter too far apart. If you didn’t know, you almost wouldn’t know … but those eyes. And for much of his first six months in the world they were closed. He was a sleepy baby, who could not gain weight because of an undiagnosed heart defect.

He had open-heart surgery on his 6-month birthday, which was the day of the flood in Baton Rouge, 16 August 2016. How strange it is to have a day we celebrate that is a day of collective trauma and mourning in this place we make our home. And after the eight-hour surgery, a three-month recovery. We couldn’t pick him up under his arms. We weighed him four times a day. We could not allow him to have tummy time, or swing him up into the air that way that makes babies throw open their mouths in exhilaration.

And the delays began to show.

The first steps, 6-12 months later than neurotypical children’s. The first pronounced words. The first of so many things. We got other firsts instead : first surgeries, first cardiac ultrasounds, first blood tests that could not find veins and caused him so much distress his heart rate shot up to 400 and his heart monitor screamed and shut off. Blood draws from a vein in his temple. First altercation with a nurse who did not know when to stop insisting she could do it on him the way she had done it on hundreds, thousands of other pediatric patients. (TL;DR – she couldn’t. He is not other patients. He is himself, utterly and uniquely.) There are so many firsts I would give my *life* to not remember. And then these that I never will have – and they’re just teeth, right? You forget about baby teeth, sort of, as years go on. The newness wears off, falls to second place or lower on the list of Big Childhood Experiences.

But this summer, our Boy Who Lived has been turned away from 2 summer camps not equipped to accommodate children with special needs — including the camp specifically for children with special needs.

And these things I never knew to anticipate — explaining, or mourning, or battling — have taken on added dimension as we watch the distance between the kid he is, and the kids “most” 7-year-olds are, grow wider.

So this tooth, in my hand, with its bloody root and its perfect little ridges and curves – this first piece of the exceptional child I carried in excitement and wonder and love and confidence for the 37 weeks he took up residence inside me — is perhaps the most beautiful gem I have ever held. Not because of how it makes him “just like” other kids his age. But because of how much it means to him to become aware of something new about his body, his mouth, some new way his lips and tongue feel, some new happiness he doesn’t have a word for.

He has a word for this one. “You have a wobbly tooth !” I reminded him, morning after morning, like Daddy Pig with Peppa. And he would give me his serious face, lips pulled inward as he worked the tooth back and forth with his tongue, feeling the resistance and the give. Then a huge smile and his own voice, always indescribably his: something like “ayaf a woddytoo !” (His version is much, much cuter.)

The day our baby lost his tooth at the library, I got to hold it in my hand and cradle it and cry and high-five him, and talk him through putting it under his pillow for the Tooth Fairy and make him feel special about this “normal” childhood experience. He went to sleep with expectation and comfort, knowing he is so loved and able to share this milestone with every other 7-year-old out there … even if it takes a translator to help every other 7-year-old know what happened and how much it means.

I had my babies later than most mamas in this part of the world, and that timing comes with its own set of blessings and challenges.

Each of my boys brings to our world his own wondrously weird combination of curiosity, physicality, mischief, compassion, and mystery. They teach me infinitely. They show me I can stretch further than I believed myself capable of, do more, love more.

When I was growing up, children with my son’s diagnosis got assigned a label I am grateful to see limited, for the most part, to orchestra scores today. In my high-school years, kids with Down syndrome were called “special,” their educational trajectory usually confined to a single classroom or a separate school, despite the Americans with Disabilities Act that guarantees all children equal educational access. Then came greater national awareness and a newly revamped terminology — exceptionalities. And now, as language around mental health and developmental stages normalizes what used to be “different,” I can say my baby boy is neurodivergent and that puts him in a category alongside children on the spectrum, children with ADHD, children with Apraxia of speech. Children, that is, of whom the world expects capability and achievement.

I believe the words we choose fail us.

They ascribe lack to what is simply different. My son has a neuro-divergent developmental delay. His exceptionality happens to represent visible, perceptible, audible differences. Those eyes a half-blink too far apart, the space between his big toes and second toes just this side of too wide … the way he says things with more vowels than most other 7-year-olds can formulate.

But his role in our family, in his school, in our circle of friends, the dimensions he brings to who we are — he shows me regularly how much my world-view is skewed and in need of recalibrating. Fortunately, I have the perfect instrument to adjust my approaches and perspective. The challenges come with blessings. Our struggle is our grace. And he helps me see on a different plane — one that takes nothing at all for granted.

PS. The Tooth Fairy brought him $5. Maybe it’s inflation. Maybe it’s the Tooth Fairy’s compassion for how hard being different will be, one day, when other teenagers seem to glide effortlessly through adolescent rites of passage while he wades. Being Different is wobbly, sometimes, and as far as I know there is no fairy assigned to things like Prom or the SATs or Show Choir.

But I remind myself now, and will reassure him then, that wobbly makes room for growth; and growth involves carrying on beyond how far you thought you could strive.