The King and I and Autism

In high school I played the flute for both the marching band and the school orchestra, and sometimes, we traveled to perform at musicals. I think we got paid something like $20 a show, which I promptly squirreled away for my next pair of parachute pants, because I wore those nylon trousers like a boss when I was a teenager.

One year I played in the pit band for The King and I at a nearby school, and for three weeks, I went to the rehearsals and watched the actors run their lines and dance and sing.

In this particular production, there was a part where the a female character was held captive by guards. The actress faced the audience while the guards faced the back of the stage, and they held her arms high in the air above her head.

On opening night, something with this scene went awry. As the actress faced all of us with her hands in the air, her costume slipped down on one side and exposed her. Realizing she was partly naked she struggled harder against the guards, but, oblivious to the situation and maybe thinking she was just really into her role, they  gripped her wrists even tighter against her fight. The look on her face was unforgettable.

The audience gaped. We looked at each other, horrified, but no one really knew what to do. When the scene ended the girl bolted off the stage with her arms clasped to her chest.

I haven’t thought about that memory in years, but last week I saw a bunch of articles about The King and I on Broadway. They were in my Facebook newsfeed and people posted them to my timeline and e-mailed me the link.

Finally, I clicked to read about what happened. From what I gathered, a family took their son with autism to a matinee of the show, and during an intense scene, the kiddo became agitated and began to make noise. Apparently several people in the audience shushed him and asked for quiet. The next day one of the actors, Kelvin Moon Loh, posted a beautiful, eloquent response in support of the family and autism and everyone’s right to enjoy live theater on their own terms.

It was yet another example of autism-meets-world-but-the-world-is-not-ready. And although I have read and heard my fair share of these stories lately, I could not bring myself to feel outraged.

The way I see it, if I decided to rant and rave every time I read an article or saw a news report about autism, well, by lunchtime I wouldn’t have enough energy to make a sandwich. And if I’ve learned anything since my days of parachute pants, it’s that outrage is exhausting.

Autism can be noisy and disruptive and uncomfortable and awkward and people don’t always like it. I often find it to be noisy and disruptive and uncomfortable and awkward and I don’t always like it, which may not seem like a big deal except my son happens to have it.

But I do like my son. I adore him, in fact. I think he is interesting and funny and smart and sometimes, complicated and mysterious and annoying.

I like to imagine Jack’s spectrum disorder is a prism, with a million different colors and lights and angles. In the theater that afternoon, there were probably many, many points of view.

He was trying, trying, trying not to make any noise but the people on the stage were moving so fast and they looked so mad and it was very, very scary.

She thought it was going to be a good day; he had eaten his breakfast without a tantrum and climbed in the car without a fuss and smiled when big velvet curtains opened for the first time.

He saved up for six months to buy good seats so he could surprise his wife for their anniversary.

He wanted to help but he was trapped in costume under the bright lights.

His stomach clenches when he hears a child crying because it reminds him of growing up with his older brother; a nonverbal enigma of a boy who later went to live in a group home.

She didn’t know what to do.

He didn’t know what to do.

From the time our son Jack was an infant, we’ve made a point to take him places. We’ve taken him to the latest Disney movies and walked through the mall on cold winter afternoons. We’ve brought him to baseball games and for dinner at our favorite Mexican place in town, and on vacation in the Caribbean.

And we’ve had to leave the movies early with him and apologized to the firemen in the mall when he pulled the alarm. We’ve had to race out of the stadium when the mascot showed up, with Jack’s face buried in our legs while he screamed.

We apologized when he shouted that his enchilada tasted like crap, and we’ve paid for other people’s dinner when he threw the salt shakers because he was terrified they had worms in them. We’ve forsaken the best seats in the theater so we could sit in the back and let him jump and flap and stim without bothering other people.

We like to call this spreading autism awareness.

I basically spend a lot of time sandwiched in between Jack and the world, explaining one to the other, so the world doesn’t think he’s a rude jerk-head and he doesn’t think the world is unyielding, unkind, and blisteringly cold.

This is not easy. In fact, it is the very opposite of easy. But still, we won’t stay home. We won’t hide autism like some deep, dark secret.

Every day I fight to make room for Jack in our world, and room for our world inside of Jack. Although lately, it feels like less of a fight, and more  like erosion. Over time, with enough opportunity, I can only hope two will rub up against each other until they are as smooth as glass, and they can fit together comfortably.

I can’t do this from my basement. I can’t do this from my own backyard, or our playroom, or sitting at the kitchen counter night after night. Jack and the wide, open world have to see each other, and smell each other, and taste and hear and know each other.

I definitely can’t do this if I’m outraged, because when I’m peeved and indignant and resentful, the clear crystal prism clouds up, and I can’t see all of the sides. Jack needs me to see the sides.

He needs me to remember there will be many stepping stones to pave the way. Sometimes they will be sharp and jagged, other times as smooth as glass, but one day, I know they will sit side-by-side in theaters and restaurants and bowling alleys and airplanes.

In the meantime, this is how I will continue to spread my own autism awareness.

I will keep taking Jack places even though it can be uncomfortable and awkward and exhausting.

I will promise him there are no worms in the salt shaker and encourage him to keep his hands in his pockets when we pass the tempting red fire alarm.

If he kicks the seat in the theater, I will tell him to stop. If he is too loud, I will ask him to speak quieter. I will remind him to say please and thank you.

And when I see someone else is struggling with needs that are special, I will reach out a hand and gently touch a shoulder. I will offer a kind word, but not advice.

I will open the door or offer to carry a bag or play peek-a-boo with the toddler in overalls who is standing by uncertainly while his or her mother tries to stop the moving tantrum train.

And if I find myself unable to help either the world or Jack, I will pause for a moment and think about a prism.

I will remember it is fragile. Some parts are smooth and some parts are sharp, and slick, and slippery.

I will imagine all the sides; the heartbreak and the longing and the dread, the beauty and the mystery and the love

I will remember that whenever I try to hold autism tighter and tighter by the wrists in a faceless standoff, something naked and raw and real and tender is always left unguarded, just like the first time I ever saw The King and I.







Last night Joe and I went to a wake.

When I first read the news report, the one that said a 23-year old man had been killed in a car accident, my first thought was that twenty-three years old is too young to be a man. He’s a boy really, barely out of adolescence.

My second thought was: I know them. I know this family. I know this mother.

I don’t know her well. We see each other a few times a year at barbecues and cocktail hours and, once, for dinner at a sushi restaurant downtown. In August we danced together at a birthday party to hits from the 80’s like Jesse’s Girl and Livin’ on a Prayer.

I’ve never met her son.

I didn’t call her when I heard the news. I didn’t e-mail her, or text her, or go to her house. Yet I thought about her for days, and my husband Joe and I decided to go to the wake and offer our sympathy.

Today is the funeral. Right this minute, in fact. As I sit here at my desk, a mother is burying her son.

A father is saying good-bye.

Two boys and one little, little dark-haired sister are each struggling for bravery as they stand tall and straight at the graveside of their beloved comrade–their partner in crime, their Batman to Robin, their tickle-monster and ponytail-puller. Their brother.

It is one of those breathtaking end-of-summer-almost-fall days, and when I glance out of the window, the sky looks like something my 6-year old might draw with his markers. It is a brilliant Crayola blue, and once in a while a fluffy white cloud floats by, lazy and plump and slow.

When I think about losing one of my children, I feel as though I’m reaching out my hand and trying to touch the sun. I have to shield my eyes against the brilliant glare, and defend my heart from the heat. I am afraid I will be shattered by it’s blinding whiteness.

And when I think about my children grieving for one another, I am equally pained. They are like the five fingers of a hand, and I’m not sure how they would function if one was missing.

Over the summer, New Hampshire went hands-free, so instead of talking quietly on my phone, all of my conversations in the car are now broadcast over blue tooth when I drive, and while hands-free is the best and safest thing ever, it can present certain, uh, challenges when you spend most of your time driving around with an 11-year old who has autism and shrieks if a phone call interrupts Rihanna mewling away on his favorite radio station.

So when Joe called me as I was driving Rose to dance class so we could talk about the evening’s logistics, Jack was all ears.

“Why are you going. For a wake,” he asked me in his flat voice as soon as I hung up.

“You remember the little girl, Victoria? The one who came over that time? Well, her brother, he passed away.”

This is not the first time I’ve had to try and explain death to my son. It’s not the first time I’ve tried to tease open the rigid, literal rivulets autism has etched inside his mind, and make room for a conversation about heaven, and bereavement, and sudden, irreparable loss.

It feels absurd, to be honest. Talking to Jack about death feels like talking to an infant about infertility, or an elephant about the refugee problem in Syria; their minds are simply not equipped to manage the information.

His mind seems unable to process the idea that their story has been forever changed; that every holiday, every season, every recital and graduation and wedding will be punctuated by the missing figure in their familial landscape.

He can’t begin to fathom how deeply a mother longs to wrap her child in bubble wrap like the kind you get at the post office, yet at the same time teach him to fly.

And his emotional pendulum is almost stuck at the most basic human feelings; hunger, thirst, fatigue, pain. He is still so child-like in his reactions, so naive and young and immature.

I also have to be careful not to ignite anxiety’s glowing embers–I need to tread lightly with my description of danger, or there’s a good chance I’ll never get him in the car again.

“What is. For this wake.”

“Well, it’s where friends and the family get together to talk and stuff.”

“And for him. The brother. He will wake up there. At this wake.” He leaned back in his seat, satisfied.

“No, Jack,” I said quietly. “He will never wake up.”

“Do people,” he asked, staring straight ahead at the car ahead of us in line. “For do they cry at a wake.”

“Yes. Yes, usually they do.”

All of the wakes I’ve ever been to have a few things in common; the neutral carpeting and the tasteful wallpaper, the antiseptic couches and all the awkward small talk. Then there’s the line that snakes slowly past the casket, as everyone waits for his or her turn to soothe, to hug, to pray.

As I waited, I considered what I know about this twenty-three year old.

He played football in high school.

He served in the Air Force.

He is the oldest boy, the biggest brother, and a mother’s first son.

When it was my turn at the front of the line, I hugged this mother and offered her the usual condolences.

Wendy, I’m so sorry. 

I can’t believe it.

I really am sorry.

But as I started to step past her, I couldn’t help myself. I needed to know more. I wanted to see the big brother twirling his little sister, and the football spiraling high against an autumn sky. For a just a moment, I wanted to know his life.

I leaned back toward her and whispered in her ear, “Tell me something. Tell me something about him.”

Her face opened wide and she said, “Oh, he was so funny. He kept us in stitches all the time. He made us laugh.”

This morning started off the way it usually does; Jack was awake around 5:45, fumbling around in his room for his glasses and his clothes. He stomped downstairs, and by the time I walked into the kitchen a few minutes later, he was already working his way through an enormous bowl of Rice Krispies. We had the same conversation we always do.

“The bus. For it comes at 8:01.”

“I know, Jack, I know it does.”

“At 8:01. The bus comes.”

“Yep, it does.”

Then he paused and asked, “How was it for the wake.”

I smiled at him, surprised he’d thought to ask me.

“It was okay, Jack. It was sad.”

“Yeah,” he said.

“If Joey had a wake,” he said thoughtfully, “I think for me I would cry.”

I looked away, up the at the ceiling, and with just Jack and I alone in the room, I thought about infertility and elephants, Syria, and car accidents in the middle of the night.

I thought about life’s big losses and small, nearly invisible gains.

I thought about autism’s rivulet’s widening just the tiniest bit to let in the sunlight.

And just before I turned my gaze back to my own son sitting at the kitchen counter, I thought about a tall, strong twenty-three year old reaching out a tentative hand, and touching the face of God.

Cariello brothers

Cariello brothers



Is it Asperger’s, Autism, or Just Plain Old Quirky?

This is a great title for a blog post, isn’t it? Great title.

Great. Good stuff, right here. I just wish I knew what else to write after such a great title.

This label thing can be so confusing. Don’t get me wrong—I love that my 11-year old son, Jack, is labeled. This is a good thing. It gets him services and helps me decode his mysterious behavior a little and, although the sting of having an identified child never quite disappears, the label helps me focus. It helps me move forward.

People ask me a lot if he has Asperger’s Syndrome or Autism, if he’s Pervasive-Development Disorder, or maybe just plain old quirky. I always shake my head and purse my lips so I look really important. Then I say, “Well, we just call it autism!” as if that’s a logical answer.

And to be honest, I’m not sure of the difference. So this week, I decided to do a little research, and I turned to none other than the highly esteemed Wikipedia.

(Research was never really my strength.)

Asperger syndrome is “an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction and nonverbal communication, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical (peculiar or odd) use of language are frequently reported.

Good grief.

According to Wikipedia, Autism is a neurodevelopmental disorder characterized by impaired social interaction, verbal and non-verbal communication, and restricted and repetitive behavior. Parents usually notice signs in the first two years of their child’s life. These signs often develop gradually, though some children with autism reach their developmental milestones at a normal pace and then regress. The diagnostic criteria require that symptoms become apparent in early childhood, typically before age three.”

And Pervasive Developmental Disorder not otherwise specified (PDD-NOS) is “one of the three autism spectrum disorders and also one of the five disorders classified as a pervasive developmental disorder (PDD). According to the DSM-IV, PDD-NOS is a diagnosis that is used for “severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific PDD” or for several other disorders. PDD-NOS is often called atypical autism,[because the criteria for autistic disorder are not met, for instance because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these. Even though PDD-NOS is considered milder than typical autism, this is not always true. While some characteristics may be milder, others may be more severe.”

Yawn. I mean, really, who comes up with this stuff? Doctors? The military? NASA?

I guess you could say Jack is like an old-world recipe for spectrum disorder. He’s a little of this and a little of that, a pinch of rigidity and a dash of perseveration. He has Asperger’s repetitive nature, but he lacks the necessary language skills for that particular diagnosis. He is physically clumsy. He has low muscle tone and as he approaches adolescence, he’s becoming a little, well, squeezable.

He may or many not have atypical symptomatology. I don’t know what that is.

Wikipedia didn’t have quirky listed, so I turned to Merriam-Webster, who defines quirky as an unusual habit or way of behaving.”

In the beginning, Jack was quirky. As a 1-year old, he had weird little behaviors; he couldn’t seem to chew even the softest food, like a banana, and he would sleep through the night for a week straight and then not sleep for days at a time.

At some point, probably around eighteen months, “quirky” gave way to “Houston, we have a problem,” and we knew it was time for the label. We knew because his idiosyncrasies—his quirkiness—was interfering his life and his development. He was not making any progress.

So at just under two years old, while we lived in Buffalo, Jack was diagnosed with Pervasive Developmental Order-Not Otherwise Specified. This is also called PDD-NOS.

When he was three, we moved to New Hampshire. On his very first day of preschool they told us his new label was Autism Spectrum Disorder, or ASD for short, because New Hampshire didn’t carry the classification for PDD-NOS.

I promise you, he did not change in our trip across the northeast part of the country. He was the exact same child we buckled into a cracker-littered car seat and drove across New York State, through Connecticut, into Massachusetts, and eventually, after eight hours of driving, over the border into New Hampshire.

He was the very same boy who screamed for 461 of the 465 miles, who only slept or quieted when Kermit the Frog crooned The Rainbow Connection, and who gobbled McDonald’s French fries at warp speed with his greasy little fingers.

Yet the second we moved to New Hampshire, he was no longer a child with PDD-NOS. Instead, he had Autism Spectrum Disorder.

Per Merriam-Webster, a label is a word or phrase that describes or identifies something or someone.

Every day, I make a little bit more peace with his autism label. I remind myself that everything has a label; cars, houses, animals, people, flowers, buildings. The muffin I am eating right this second has a label, and that label is delicious.

(Also, blueberry and not Paleo, but I may be getting off track here.)

To this day, Jack is still quirky. He thinks cars cost $3 but he can fix the DVD player. He spent an hour screaming because I made him unload the dishwasher, but when no one was looking he changed two light bulbs that had burned out in my office lamp.

He starts every single day with an episode of “I love Lucy.”

He ends every single day with a bowl of ice cream.

He knows the population of Nigeria, but the other day in the car he asked me what the word refuse meant.

I guess you could say the threads of perseveration and routine and rigidity and anxiety are intact within the spectrum tapestry, and yet the colors change by the minute, by the hour, by the day.

If someone from NASA or a researcher from a medical team knocked on my door tomorrow and asked me if Jack has Asperger’s or PDD-NOS or Autism or if he was quirky, I wouldn’t give them a straight answer. Instead, I would tell them this story:

It was close to 8:00 at our house and there were dirty dishes all over the counter and the table. The pots and pans I’d used to cook dinner were still on the stove. I felt unmoored, undone. I wanted the night to be over.

It had been a long afternoon of reminding Jack to finish his homework and taking away the computer and listening to him scream for the computer. Now, he was clutching his notebook in both hands and threatening to light it on fire.

I stood behind the sink, and my husband Joe sat at the counter.

“Why can’t you—“

“He’s exhausted, let it—“

“I can’t let it go, Carrie ! He needs to finish this problem!”

All at once, a young girl stepped between us. She was wearing her pink bathrobe, and her hair was wet from her shower.

“Mom, Dad, I think I can help him. He likes to talk to me. Let him talk to me.”

“Rose, we can handle this.”

“Let me try. He will talk to me.”

By this point, Jack was circling, screaming, flapping. Gently, she followed him through the kitchen.

“Jackie,” she called out softly, using her special nickname. “Tell me. Tell me about 6th grade.”

“You KNOW,” he raged, hitting his hands on his head. “I TOLDED YOU!”

“Tell me again,” she said so quietly. “Tell me about art class.”

“No more no more paintbrushes no more for a week because there is no more.”

“Why, Jackie? Why no more paintbrushes?”

Watching as she took his hand and guided her big tall brother to the nearest stool, I nearly wept, from what exactly I can’t say. Gratitude, or maybe relief. Or maybe because I was—and am—so tired of it all; the battles for the simplest task and the screaming and the stimming and the longing and the trying. 

This will never be over. No matter how many times we change the name, autism is not a Halloween costume he can slip on and off. It’s more like a tattoo. It is inky and permanent and real.

Jack never did finish his homework, but he sat side by side with his sister, and that was enough. That was the very best we could do this time.

After I finish telling my story, I will go on to say that I do not care what we call it. I do not care if one day he’s considered Asperger’s or PDD-NOS or whatever term the people in charge conjure up next.

I just want to remember that night, in my kitchen.

I want to remember the pinkness of her robe, and how her hair curled up on her cheek. I want to remember the way he leaned toward her to hear her voice, the way he was calm for the first time in hours.

I want to remember that his label is fluid. It breathes and moves and changes. It is infinitesimally different today than it was the day before.

I want to remember that before he is a label, he is a student and a classmate and a neighbor and a cousin.

He is a nephew and a brother.

He is my son.

He is Jack. Or, for one 8-year old girl, Jackie.

Rose and her "Jackie"

Rose and her “Jackie”












Dear Teachers: Where Does The Road to College Start?

Dear Teachers,

Now that we have two full weeks of school under our belts, I thought I might crack the venetian blinds to our life with five kids, and give you a little peek inside of my philosophy about school.

I do not pack snacks. We have a generous supply of pretzels, fruit, nut-free granola bars, and pre-washed carrots available at all times. If a Cariello boy or girl comes to school without a snack, it’s because they forgot to pack it themselves.

My advice? Do not feed them from your stash. They are like adorable stray kittens—all wide eyes and pink tongues—and they will live off your emergency supply of animal crackers for the entire year if you let them have so much as a crumb.

I believe strongly in something called natural consequences.

My kids also buy hot lunch. Every day. Yes, I know, I know—the calories, the salt! Pancakes at noon, and nachos on Thursday!

Listen, I just don’t care. For the most part we have nice, nutritious meals for both breakfast and dinner, and if one them would like to pack a sandwich and some fruit, we have five lunch boxes monogrammed with their initials and lots of healthy food. We have water bottles and Ziplock bags and lots of yogurts. The only thing we don’t have are Bento boxes, mostly because I don’t really know what they are.

I only check homework to see if it’s completed and whether it’s legible. I do not check answers. I do not sit at my kitchen counter and attempt to explain alphabetical order or Cuisinare rods or how many apples Pierre has left if he ate one and gave four away to his friend Billy but grew six more on a tree even though its obvious from Pierre’s name he probably lives in France and I’m not sure they even have apple orchards there.

As I like to remind my children, I already did seventh, sixth, fifth, fourth, third, and first grade. In fact, I did all the grades. And I did quite well! You might say I passed with flying colors.

(I think I was in 7th grade when I first held hands with a boy. His name was Jamie Pilks, or something like that. He was shorter than me—a lot shorter—and his hand felt small and clammy clasped with mine.)

I do not help with projects. This may mean my child’s macaroni art project will hang right alongside a girl whose mother majored in macaroni art in college and so it will be perfectly crafted in Samuel L. Jackson’s likeness even though the assignment just asked for it to look like a bird.

I’m fine with that. The way I see it, it is their turn. It’s their turn to dream, and to fail, and to try, and to work. It’s their turn to macaroni.

I do not sign things in the morning. If they don’t show me the reading log or the permission slip or by 7:00 the night before, well, the part where it asks for the parent signature is going to be blank.

Family traditions will always come before sports.

I do not run back to school for anything that was left behind. They need to bring their crap home. This includes their glasses, their textbooks, their worksheets, and the special pencil with the minion eraser on top.

I don’t care if they make the honor roll.

I don’t care if they’re in accelerated math.

I don’t care if they captain a team, or run the student council, or wear a crown for homecoming.

Sure, I’ll be so proud if they do any of these that I’ll just about burst. I’ll take a thousand pictures and tell everyone I know and go to all the games. Yet in the long run it’s not incredibly important to me. This is the truth.

I care if they stand up to a bully.

I care if they introduce themselves to the new kid.

I care if one day, after they collect their pancake-and-nacho hot lunch, they notice a boy sitting all by himself. And they pass by the table where they usually sit, and slide their tray next to his.

I don’t drive anyone to school. Conveniently, there is a bus that arrives at the corner the same time every day, Monday through Friday, and if one of them misses this bus, there’s a good chance they won’t be in school that day. They’ll be at home with me catching up on important things like silent reading and cleaning the toilets.

I know it sounds mean. I know I ask a lot of them, but I promise you there are good reasons.

Sure, it helps me stay organized when we have five kids in three different schools; five kids in a complicated combination of karate, football, cross-country, track, Girl Scouts, and dance.

But it’s more than that. From the time they’re about eleven years old, most kids will essentially carry a computer in their backpack or in their hands. At any given moment, they can Google the value of Pi and how to say pelican in Spanish.

(It’s el pelicano, by the way. I just Googled it.)

They can ask Siri for directions rather than read a map, and use a calculator to figure out Pierre’s apple situation.

In this technological age, I would rather teach them the things Siri and Google can’t; how to be resourceful, and responsible, and kind.

And yet, it’s even more than that. Let me crack the blinds open just a tiny bit more, so you can take a closer look.

As many of you know, we have a special guy, Jack. He’s eleven. He’s in sixth grade, and he has autism.

The first time I heard the doctor tell me Jack’s diagnosis, there was an almost a deafening silence all around me, if silence can be deafening. It was as though tall, white-capped waves started crashing down, and the water was filling my ears.

And those waves, well, they changed our landscape forever. They pounded it into flat nothingness, and erased all of the peaks and valleys; the summits of play dates and track meets and college, and all the ordinary, normal puddles the ebbing tide leaves behind.

We had to start from the beginning. We had to build again, and resurrect our own sand castles from the damp, sandy earth. We had to–and still have to–consider what Jack really needs to know in order to make a life for himself, a life that is as independent and fulfilling and normal as it can possibly be.

And although he could care less about having friends over to play or running for the cross-country team, Jack wants to go to college. He talks about it a lot. Mostly he wonders if his college will have a water slide and whether or not it will be close enough for him to walk to a Kentucky Fried Chicken for lunch and come home on the weekends to check on Wolfie, but in his mind it is a place he is headed.

I don’t know if he’ll ever go. I really don’t. It will be a long, arduous road for him and for us, but I will do everything I can think of to steer him there.

This means I have to be harder. I have to insist on the little things, in order to hope for the big things. I have to believe—every single day, I believe—that the road to college does not start with accelerated math, or the honor roll, or a varsity letter.

I believe it starts with eating what everyone else eats in the noisy cafeteria, remembering to bring your blue folder home at night, and the philosophy that family always comes first. It starts with determination, and strength, and organization.

When I hear Jack talk about college, my heart squeezes tight like a fist. Sometimes, I have to look over his shoulder or down at the floor so he won’t see my face.

And when I look away, I make myself remember the rushing sensation of water in my ears the first time I heard the word autism in connection with my son. I make myself remember his progress and his dreams; where we started and where we are hopefully going.

Mostly, I make myself remember that even the tallest castles towering in the sky begin with just a few tiny grains of sand.

Jack, on the first day of school.

Jack, on the first day of school.




Autism Mama, Raise Your Hand

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 counselor.

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.