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Autism Mama, Raise Your Hand

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My 11-year old son, Jack, is now pulling out his own teeth.

He starts picking at them in the morning, wiggling them loose by the afternoon, and by dinnertime he presents me with a baby molar he wrenched free. Then he runs upstairs to carefully place it in a long line of teeth he pulled out the day before, and the day before that, and even the day before that.

He’s always had a thing with his teeth. He could never tolerate one that was loose or wobbly. They distract him. He can’t think of anything else until the tooth is gone and he can poke his tongue or a finger into the tender hole it leaves behind.

It turns my stomach. It really does. Every so often I catch him with his fingers in his mouth and I snap at him to stop.

“Jack! Stop picking at your teeth!”

None of the dentists I know—not even the one I live with—are alarmed by Jack’s new habit. They remind me that a lot of kids—even kids without an autism diagnosis—do this regularly, that wiggly teeth are both a nuisance and a novelty.

They assure me they are baby teeth, they are meant to come out, and he would never be able to do any real damage.

But see, I am an Autism Mama. So I have to worry.

I have to worry because a behavior that is just plain weird in another child could be something else entirely for Jack. It could be anxiety. It could be sensory. It could be the latest obsession and he won’t stop until he has nothing left in his mouth to pluck out and he has to gum his pancakes in the morning.

I picture Jack’s many behaviors stacked precariously on top of one another like a strange game of Jenga, only instead of wood, the pieces are made of ice. They could slip and crack at any moment, and the whole thing will crash to the ground.

There really is no good definition of an Autism Mama. In Merriam-Webster I found one for Autism, and I found one for Mama:

Autism: noun au·tism \ˈȯ-ˌti-zəm\

“A variable developmental disorder that appears by age three and is characterized by impairment of the ability to form normal social relationships, by impairment of the ability to communicate with others, and by stereotyped behavior patterns.”

Mama: noun ma·ma \ˈmä-mə\

“A person’s mother.”

I couldn’t find a definition anywhere that linked the two together; that bridged the gap between maternal caregiver and spectrum diagnosis, so I decided I should just come up with my own.

Who knows? Maybe one day Merriam-Webster will take submissions. I want to be ready when they do.

Autism Mama: noun au·tism \ˈȯ-ˌti-zəm\ ma·ma \

Person responsible for the daily health, safety, and general welfare of an individual with a diagnosis of Autism Spectrum Disorder, to include Pervasive Developmental Disorder-Not Otherwise Specified, Global Delay, Asperger’s Syndrome, Rett’s Syndrome, Quirky Syndrome, or anything else found on the spectrum’s giant sloping bell curve.

(Aforementioned term Autism Mama can also be expanded to include grandparents, babysitters, aunts, friends, uncles, and teachers; anyone who contributes to the ongoing happiness of said individual.)

Statistics show an astoundingly high number of Autism Mamas, but this population is still prone to feelings of isolation and loneliness.

Immediately upon entering unfamiliar territory, like the mall or a friend’s house or a movie theater, the Autism Mama must assess every possible escape route, hot surface, and unsuspecting stranger. Her eyes rove constantly. She is always prepared for the worst.

In her basement, she has a box full of Baby Einstein Videos and toy trains and little plastic trolls. It is the leftover detritus from her child’s previous preoccupations, and looking at it makes her heart simultaneously ache and soar, as the contents represent the unusual trajectory of his halting progress.

She is often tired.

Sometimes, she has to swallow bubbles of pure rage when she overhears other parents complaining that their kids didn’t color inside the snowman’s lines or get into the accelerated reading program.

She knows perspective.

She knows pain.

She knows regret.

She knows what it feels like to clap and cheer and celebrate the smallest milestone, while her busy brain races ahead of itself. How will he manage high school? Where will he live? What if he never learns algebra?

She has fantasized about punching Elmo right in his cheerful red face.

She hates Thomas the Tank Engine.

She has sped to Walgreens just before closing to pick up melatonin.

She knows what time Walgreens closes.

Outwardly, the Autism Mom can appear defensive or abrupt—even abrasive at times. But like a Russian nesting doll, on the inside is a smaller version of herself who is trying to be the voice for someone who doesn’t have one, all while weathering the judgment and scrutiny that the world bears down upon her shoulders like the rays from a hot, harsh sun.

“What that kid really needs is some discipline!”

She has assessed each of her other children at one time or another, analyzing their personality traits and emotional stability to determine which one of them might be able to welcome their brother into their family when they’re all adults.

She hates herself for doing this. She feels guilty about burdening another person in the family with a dependent sibling.

Then, faster than you can shout I-don’t-want-him-in-some-group-home, she feels righteous and just about the whole idea. He is their brother, after all, and family is family!

And then, guilty again.

At one point or another, she has blamed herself. She thought the condition, the diagnosis, was her fault. It’s her fault he has no friends. It’s her fault he picks at his teeth. It’s her fault he doesn’t sleep at night.

There must be something—something—she could have done to prevent this neurological condition from striking her precious boy like a snake waiting in the tall grass.

Then, faster than you can shout it’s-genetic-and-from-Autism-Dad’s-side-of-the-family, she realizes it isn’t.

And then she stumbles across some carelessly written article about GMO’s or circumcision or pesticides, and she points her finger inward once more.

It can be said that inside an Autism Mom’s mind is a mess—a giant jumble and tangle of moods and feelings and ambitions. Yet, she remembers particular details with the focus of a laser; the first word he ever said, the first time he ate an orange, the first time he played hide-n-seek with the neighborhood kids.

She is always, always working on something—his low muscle tone or the way she’ll only eat square pizza, the high-pitched shrieking, the spitting, the sleeping.

She wishes that just once, he would look toward the camera in a family picture.

Certain words have rolled around in her brain and in her mouth like marbles that are worn smooth.

parallel play literal rigid perseverate spectrum anxiety

She has found herself saying the most ridiculous, absurd things.

“Yeah, he kind of has a thing with counting how many spatulas people have in their kitchen. We’re working on it!”

She has cried herself to sleep.

She has pictured opening the front door, walking outside, and running away forever.

This Autism Mama, she knows the power of a good brownie.

She knows the power of a good counselo r.

She knows the power of prayer.

The Autism Mama has been known to accept the diagnosis differently than her counterpart, the Autism Dad. Sometimes she accepts it sooner, while he ponders things like statistics and research and outcomes. She has a pick-ourselves-up-by-the-bootstraps kind of resolve, while he—ever pragmatic—prefers the wait-and-see-approach.

She can’t wait, because she knows. She is the mother, and her knowing is nearly a physical sensation, like a small, beautiful winged butterfly hammering inside her ribcage.

She marches forward like a soldier into an IEP battle, headlong into social groups and online forums and the gluten-free aisle at the grocery store.

Because deep down, where the caged butterfly flutters, she knows she has just one chance to raise this child. Time is always running ahead of the Autism Mama like a clock with legs.

She is constantly balancing the things she cannot change with the things she’s trying to change–to understand the enigma in front of her so she may one day help others understand him, too.

And one morning, after he’s left for school and she’s straightening up his room, she looks at the long line of blood-tinged teeth on her son’s nightstand. Without even thinking, she sweeps them into a plastic bag with her hand, walks down to the basement, and nestles them next to a pink-haired troll lying on its side in a large cardboard box.

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