Why Do People Stare?

You probably don’t remember me, but we crossed paths at the mall the other day. I was walking to my car with my kids, and you were also in the parking lot. You were shouting for your son to stop before he stepped into the crosswalk.

“Derek! Wait! Stop!”

You looked at me and snapped, “Take a picture why don’t you, it will last longer!” And then you turned to the woman who was with you—was it your sister, maybe? She looked like she could be your sister. Anyway, you looked at her and said, “Do believe how she was staring at us?”

I turned away quickly. My face felt hot. I shuttled my five kids and their five syrupy slushies into our minivan and drove away. For the rest of the afternoon, I thought about you.

I know how it feels when people stare. People stare at us a lot. They stare because we have five kids, so when we walk into a restaurant or an airport or the grocery store, people tend to notice.

They also stare because my second son, Jack, has autism, and even though autism is technically a diagnosis of the mind and not a physical disability, he moves his body in a way that sets him apart. He jumps and grunts, he rubs his fingers down the side of his nose and wipes his hands down his pants a lot. Plus he clears his throat over and over. I’ve been told this is a verbal tic, but whatever it is, it gets people’s attention.

This summer people have stared at us even more because my 6-year old, Henry, broke his leg and he was in a wheelchair for a while. He had a long red cast up to his hip, and for some reason people noticed him a lot. In fact, a few days after he broke his leg we took him to something called RibFest right here in New Hampshire. Maybe you’ve heard of it—it’s when all these vendors line up and sell ribs and wings and stuff. They also have a lot of fun things for kids; face painting and bouncy houses and tall plastic slides.

Anyway, people really stared at us that day, not just because of the wheelchair and the cast and all, but because Henry insisted on having his face painted like the Joker from Batman, except the artist wasn’t very good and he just slathered all this white paint on his face and smeared red on his lips and gave him big, black slashes for eyebrows. Then my mother-in-law was very concerned that Henry was maybe too hot while we wheeled him around in the grass, so she stuck a big red umbrella to the wheelchair. Let me tell you, he looked scary, and people gaped.

People also stare at me because I look a lot like Sofia Vergara. You know, from Modern Family? It’s nearly uncanny, how much we look alike. My hair is just a little longer and shinier, and I’m actually thinner than she is, if you can believe it. Oh, the staring.

(That last one isn’t actually true.)

Ever since I was little, my mother told me not to stare. Staring is impolite. In fact, it’s downright rude. Everyone knows this. I tell my own kids not to stare; not to draw attention to other people by gawking or ogling.

And yet there I was, staring at you in the middle of the parking lot on a warm summer afternoon.

I think people stare for a few reasons. We stare because we’re curious, or maybe nervous, or lost in thought. We stare at the beautiful, the unusual, the exotic. We stare to admire, or to compare.

I first looked at you because I heard you call your son’s name, and you sounded distraught.

“Derek! Wait! Stop!”

Then, a little louder.

“Derek! Wait!”

He looked like he was about eleven or twelve, and something about him was familiar to me, even though I have never seen him before in my life.

I heard your slight panic and your weariness. It sounded as though you were reciting a well-rehearsed line in a familiar play.

“Der-ek!”

I think, perhaps, you and I are acting in the same play; you and I are both the mother, and my son Jack is your Derek. Our scripts are very similar. See, I spend approximately nine-tenths of my life saying those very words, “Jack, wait!”

Or, “Jack, please don’t touch that.”

I often say, “Be careful, there’s a car coming.”

Some days, I wish I had a different script to read. I wish I said things like, “Wow! Did you see the way Jack caught that fly ball?”

Or, “Yes, Jack, of course you can invite some friends to sleep over tonight. Just don’t stay up too late again!”

Or even, “Just wait! One day you’ll have your own kids and then you’ll see!”

Instead, it’s “Here, take your melatonin before bed.”

And, “Look in my eyes, Jack. Look up at me.”

And sometimes, “You’ve played that song forty two hundred ninety-nine times today, turn the music off.”

See, since my son was born over eleven years ago, I have spent a lot of time warning, cautioning, anticipating, watching. And even though Jack is going into sixth grade and he stands almost as tall as I do, I still have to ask him to make eye contact and use his words and keep him from running into the street. I still have to hold his hand—or at least make sure he’s by my side—when we walk in a parking lot.

I noticed Derek had a frozen, dreamy smile, as if his mind was miles away and he was thinking about a joke or a funny story. His blankness was nearly angelic, ephemeral.

My son Jack has that look a lot. It simultaneously frustrates and delights me. It delights me because he doesn’t laugh or smile as much as most people, so it makes me happy when he does. But if frustrates me because I know, in that moment, he has unplugged from our world and is instead tuning into autism’s steady drone.

I didn’t mean to upset you when I stared. I am sorry.

I don’t mind when people stare at us anymore. I really don’t. I think in some small way, people stare because they care. They stare because they are interested. They long to know more but are too afraid to ask–they want to help but they don’t know how.

I guess you could say I have made it my choice not to mind. If staring means someone understands a tiny bit more about autism, great. If it means they’ll reach out a hand and help me keep him from getting run over by a car, fantastic. If it helps build awareness, and relationships, and compassion, well, it’s worth every second of my own discomfort.

I realized as long as there is a boy who hops and jumps and grunts, who rubs his fingers down his face over and over and clears his throat again and again, there will be staring.

As long as there is autism, there will be staring. And if I don’t mind, hopefully he won’t mind, either.

I wish I did take a picture, not because it would last longer, but because I could have shown it to you, and you could see what I see. You could see what I noticed in the split-second we were together in the mall parking lot.

I saw his beautiful smile and his white, even teeth. I saw the smooth skin of his cheek and his sparkling brown eyes.

I saw you right behind him, wearing a look of concern and apprehension and fatigue. In the flash of an instant, I felt as though I saw all of your hopes and your dreams and your love and your fight.

I saw that, regardless of autism, you are me and I am you, and at the end of the day we just want to make sure the Derek’s and Jack’s in our world don’t accidentally step off of the crosswalk and in front of a car.

RIbfest 2015. Never get your face painted like the Joker.

Ribfest 2015.

 

Scary.

Scary.

 

 

How Do I Keep My Kids Off Heroin?

When I was pregnant with my oldest son, Joey, I worried about a million things; car seats and strollers, sudden infant death syndrome and folic acid. I worried he might be born a hermaphrodite, or with cleft a palate, or a pointy head.

(I worried about the pointy-head thing because my brother had a pointy head when he was a baby. He outgrew it though.)

Autism, however, never once crossed my mind.

When I had a houseful of infants and toddlers and preschoolers, I worried about them choking on hotdogs or falling down the stairs, running into the street or poking something into an electrical socket. I worried about diaper rashes and the stomach bug and ear infections.

And after I read an article online—one that so aptly described my chillingly silent 1-year old it took my breath away—I started to worry about a little something called autism spectrum disorder.

I no longer have plump infants or unsteady toddlers or inquisitive preschoolers. Instead, I have tall, gangly kids in elementary and middle school; a 12-year old and an 11-year old and a 9-year old and an 8-year old and a 6-year old, and my worries have changed and grown right along with them. Now I think about underage drinking, unsafe sex, and drugs.

Oh, and autism. Always, always autism.

Some things in life seem to be universal, crossing over the boundaries of race and gender and ethnicity and class. You know, like head lice.

And autism.

And addiction.

I had lice when I was a kid. Twice, in fact. And let me tell you, having lice is not twice as nice the second time around.

And we have autism. By we, I mean my 11-year old son, Jack, but some days I live and breathe and see and smell and hear autism so very deeply in my body and mind, it’s as if I have it myself.

I have never been offered a drug, if you can believe it. Not in college, not on the bus, not in the back of the locker room after field hockey practice. In fact, I know very little about addiction in general.

But it’s no secret that heroin is sweeping our nation, and like most parents, I read the news articles and Facebook posts with a combination of horror and curiosity and fear.

When I think about my early days as a young mother, I remember how lost I felt. And looking back, I realize what I really wanted was someone to forgive me for the unnamable disquiet of blame and hurt I carried every day.

I wanted someone to notice that I was doing the best I could, that my days were so long and hard and boring and overwhelming.

I was lonely. Not lonely as in no-one-is-around-me-I-am-alone kind of lonely, more like no-one-not-friends-or-people-I-work-with-or-my-own-mother-understands kind of lonely. I felt isolated in my pursuit to understand this boy and his diagnosis. It was just he and I, trapped in a silent, hushed bubble of denial and shame and worry.

I was terrified when we learned he has autism and I’m still terrified that he has autism, but the thought of drugs and addiction and heroin scares me more. Because let’s face it, he won’t go to jail because of autism. He won’t steal to get more of it or make long, painful track marks up his arm with it. He won’t die from it.

I look at my oldest son, and I worry that his easy nature and kind temperament will prevent him from saying no if someone asks him.

I’m scared Rose will fall into a group of daring girls who are eager to try the latest offering. I think about my middle son and his anxiety, and feel a rising panic that one day, he’ll choose to self-medicate himself for relief.

I’m afraid my youngest, Henry, will feel pressure to outdo everyone, to bend all of the rules until they break.

And Jack? Well, I don’t even know where to begin. His propensity for impulsiveness, his naiveté, the way his mind may never comprehend the idea of dependency or addiction or substance abuse.

I am afraid that I am hiding behind an unrealistic cloak of family dinners and church sacraments and chore charts, when really there is something else I should be doing in order to keep my kids safe.

Will there be one single moment that forever swerves their course? Or will every parenting mistake I’ve ever made—every low moment and small failure—mix and swirl together like the explosive ingredients of a Molotov cocktail?

You know, like the all times I turn a blind eye to Jack sneaking an extra cookie from the snack cabinet because I am too tired to fight about it.

When I ignore Henry to check e-mail, or tell them they can’t play travel soccer because it’s too demanding and I don’t feel like driving them all over the state every weekend, or let Joey watch a PG-13 movie even though he’s only twelve.

Or like one night last week, after a long, hot summer day of negotiations and bickering and boredom, I accused 9-year old Charlie of not brushing his teeth when I asked him to and he turned to where I was standing on the stairs and he had tears pooling in his huge brown eyes and he cried out, “Why do you hate me?”

Hatred. Fear. Insecurity. Addiction.

I don’t know a lot about heroin, but I do know this: every addict was at one time an infant, a toddler, a preschooler, a child climbing the bus with a backpack full of crayons for the first day of second grade.

He or she maybe went to the beach, and sat for family portraits at JC Penney’s, and threw icy cold snowballs in the winter. They lost mittens, and looked for the full moon at night, and found pennies on the floor of the grocery store.

They were—they are—just like you and me.

But at some point, their own course swerved and their direction changed. The memory of warm, sandy beaches is blurred by heroin’s dangerous high; the family bonds captured in pictures broken and splintered and shattered into pieces.

It’s true, I don’t know much about addiction, but I do believe behind every addict there is a weary mother, a frustrated father, a family in turmoil. There is isolation and shame and regret. I imagine there is also a sharp, burning longing for mercy.

Forgive yourself.

You are doing the best you can.

You are not alone.

I don’t think I could have prevented Jack’s autism, even if I wanted. But maybe I can prevent my kids from turning to drugs. I just have no idea how.

Sure, I could open Google and search terms like the warning signs of heroin and how do you keep your kids off drugs, but that’s just statistics. That’s just words on a screen or a piece of paper. It doesn’t answer my questions.

I want a different kind of research. I want a glimpse of the baby, the toddler, the child, the man or woman behind the addiction, the same way I long to show the world the blue-eyed infant and the wandering boy and the tall, gangly middle-schooler behind the autism diagnosis.

I want to talk about the un-talkable. I want to talk about what it was like before heroin came in like a thief in the night.

Did he have a lot of friends? No friends? A few friends, or mean friends?

Was she a Daddy’s girl, or the apple of his mother’s eye?

Was she bullied, or a bully herself?

Did she watch a lot of television? Did he play soccer, or football, or sing in the chorus?

Were there red flags; subtle warning signs that something was amiss?

Did he get hurt playing football and start taking pain medication and then turn to something stronger?

I may not know a lot about addiction; I don’t know what the battle inside the heroin bubble looks or feels like, and I don’t know how to prevent it in my own family or anyone else’s.

I can only hope that no matter what the battle–autism or addiction or a head full of creepy-crawly lice–we each remember the lyrics to our own fight song, and in our lowest moments we whisper them and shout them and think them and know them:

We are forgiven.

We are doing the best we can.

We are not alone.

My brother John, after he outgrew his pointy head.

My brother John, after he outgrew his pointy head.

The Ultimate Question: Would I Change Him?

My kids go back to school in a couple of weeks, and in preparation for my son Jack’s move to 6th grade, I took out the folder.

You know, the folder. The one that holds every single piece of paper and prescription and description, dating back to the day he was officially diagnosed in November of 2006.

Referrals for early intervention.

Recommendations for occupational therapy and speech therapy and physical therapy.

Random articles about cures and services and how to hold your family together in the midst of a diagnosis.

And finally, the judgment. The verdict, the finding, the truth; pervasive developmental disorder, not otherwise specified, which eventually became just plain old autism.

Our folder is blue. It’s a mess. I probably should have organized it with tabs and dividers, but to be honest, I couldn’t bring myself to arrange all the paperwork into neat sections–to take the papers out one by one and re-read them and sort them and catalogue them. Somehow, this  would have made autism too permanent, too everlasting.

For years and years, I held on to a single thought: He might outgrow it. I thought that with enough speech and therapy and prayers and love, by the time he was five or eight or even ten years old, his symptoms might magically disappear like a bunny inside a deep, plush hat.

He didn’t outgrow it. He isn’t going to outgrow it.

Stuffed way in the back of the folder, in the bottom of one of the pockets, is a greeting card that I bought about ten years ago in some Hallmark store. I can’t remember where or when exactly, but I do remember how I felt that day. I felt exhausted by my 14-month old son. I felt helpless and weary and annoyed.

I saw this card and the picture of the boy on it looked exactly—I mean exactly—like Jack at the time. Chubby, irritable, cute, fussy, and somehow endearing.

Once a year I like to take the folder out and look at the card and glance through the paperwork, and whenever I read the phrases and comments written by all of the specialists and therapists and doctors over the years, they seem almost innocuous in their banality. It’s very hard to picture the actual boy and the life and the autism in these words.

“Jack has significant sensory issues related to texture and food.”

This means his fingers graze ceaselessly over everything—the paper tray on the printer, cigarettes on the ground, ice cubes in his glass, the lip gloss in my purse—much like a person who sees the world around him solely through touch.

He also rolls all of his food around before he eats it. The cheese from the pizza, the meat from his taco, the hotdog from his bun. To say this is annoying is like saying it’s hot when you stand near the Equator.

“Child hears background noise and foreground noise simultaneously.”

When I talk with Jack, I am competing with every single sound in the atmosphere; garbage trucks driving down the street, a dog barking next door, his brother playing Minecraft on the computer three rooms away.

He cannot differentiate between the scratch-scratch-scratch of the pencils in the classroom and the teacher’s voice. Within the canal of his sensitive ear, they are all important, all a priority, and all very, very loud.

“Jack has delayed cognitive abilities when it comes to flexibility and executive functioning.”

Um…he’s incredibly, rigid. I’m not sure what else I can even say about this, except to give an example.

Jack makes waffles every Thursday morning. For well over a year now, I have woken to the steady whisper of waffles today today is waffles let’s make waffles by 6:03 on Thursday mornings.

Last February, NBC Nightly News did a segment on our family and autism. It was crazy exciting.

They sent a camera crew to our house to film us eating breakfast. The night before, we suggested to Jack that he make waffles, to showcase his cooking skills and his patterns.

He freaked out.

“It is not! For THURSDAY! Tomorrow is Wednesday. No waffles.”

NBC Nightly News, people. NBC.

“Autism is hard on a marriage.”

This particular line is from a magazine article someone sent me, and I remember reading it and wondering exactly what the standard for “hard” is.

Is it living together with the unknown; not knowing if he’ll ever be independent or drive a car or move out? Is that the hard part?

Or is it the relentless day-to-day negotiation and compromise and arguments over IEP plans, bedtime, and whether or not he should have to play a sport.

“Child suffers from debilitating anxiety.”

Ever try moving a 3-ton elephant through something small, like a keyhole? Me neither. But I have had to move my son Jack through his day, and I’m pretty sure his emotional baggage weighs about the same.

I’ve had to inch him past Chihuahua’s on leashes and convince him that blue water in the toilet bowl isn’t dangerous. I have answered the same question about the wind chill factor seven thousand four million times.

I’ve had to stand by and watch as anxiety twists and distorts his reality, interrupts his sleep, and creates a silent, private chaos within the confines of his mind.

“Child engages in repetitive behavior.”

Refer to  number of times he asked about the wind chill factor above.

Words on a form or medical report simply don’t do the spectrum disorder justice. They fail to capture the struggle, the rage the tears, and the work of it all.

They also fail to capture the love, and the authenticity, and the joy of it all.

I guess the ultimate question is: Would I change him?

I mean, I know there is no cure, but if I could magically snap my fingers and remove his autism altogether, would I?

If someone offered an elixir, or a pill, or a treatment to take the autism out of the boy, would I give it to my son?

Yes.

No.

Maybe.

Some days.

My life would be easier if he didn’t have it. That’s kind of ugly and a little painful to admit, but very, very true.

I could actually sit down at family gatherings and holiday parties and barbecues. I could relax around buffets, instead of worrying he’s going touch all the bread and roll all the olives around in his hands while guests look on, horrified.

Joe and I would definitely argue less.

I wouldn’t spend so much of my day listening and interpreting and decoding his speech, his needs, his goals.

His life would be easier if he didn’t have autism.

I could change his tender, obvious loneliness that is as palpable as a beating heart.

He would have friends, gaggles and gaggles of pre-adolescent boys who call him and play with him and like him.

He would go to pool parties and bowling parties and sleepovers.

He would be free of the crushing panic that shrinks his world to the size a keyhole.

Yet Jack would simply not be Jack without autism. It’s nearly unimaginable.

I guess the ultimate answer is: It doesn’t matter if I would or if I could, because I can’t. I can’t re-wire Jack’s brain or go back in time and alter his genetic constitution.

I can’t rewind the tape and erase the doctor’s handwritten note—a postscript, a footnote at the end of a long list of symptoms and behaviors and delays.

Pervasive developmental disorder. Autism.

I can love him.

I can help him.

I can keep in mind all he has done and will do, and remind myself that the boy who learned to talk will one day learn to keep the noodle on his fork and maybe make waffles on Monday instead.

In the meantime, it’s time for me to buy some tabs and dividers and put my folder in order, because before I can love and help and remember, I have to finally accept.

IMG_8436

The card.

The Backpack

A lot of times, when people talk about backpacks, they share bright, perky stories about Bento boxes and handwritten notes, report cards and sneakers for gym class.

I’ve never carried a Bento box. I don’t even know what one looks like.

I’ve been with the same boy for eight years now—ever since he was a plump, silent three-year old and rode the small bus to something called integrated preschool. Back then he wore diapers. I remember carrying them for him, and the sweet, powdery smell they left behind when the teacher took them out of my pouch. 

During preschool I sat in a cubby and listened to the kids sing their songs. I think this is where the boy realized he could see the days of the week in color. Every Monday was blue on the chart they used for their morning meeting, and I think when he closed his eyes he would picture the bluest sky, or ripe blueberries.

I have never carried blueberries. I don’t think this boy likes them very much.

I have carried notes back and forth, back and forth. I used to carry notes that said what kind of day he had, if it was something called a thumbs down day or a thumbs up day.

On the thumbs down day, it meant he had a hard time. It meant he hit, or scratched, or screamed. He didn’t sit in his seat when he needed to, and he couldn’t keep his body still.

Quiet body Jack look in my eyes quiet body quiet body.

But on a thumbs up day, he listened to the teachers. He worked hard to drown out the noise of the garbage trucks on the street outside, and concentrate on the colors and shapes and sounds inside.

Where’s the triangle good boy Jack what color is it green or yellow listen to me now great job.

I am red. Well, mostly red. Now I have a few dark stains that don’t come out.

I have carried IEP plans, and granola bars he never ate, and small containers of applesauce.

I have brought home forms with phrases like autism spectrum and pervasive developmental disorder and occupational therapy and speech evaluation.

I have carried self-portraits he drew in art class and plastic bags with homemade play dough. CD’s full of Nicki Minaj and songs by Rhianna and, most recently, the Beatles. Books for show-and-tell and homework folders and long lists of spelling words.

Over the course of eight years, I have held his life in my pockets. I have held his diagnosis and his future and his behavior and his food.

We recommend speech three times a week for next academic school year.

Child is unable to read at grade-level.

We worked with handwriting today he got frustrated.

Ate all of his snack and threw away the wrapper himself.

I don’t carry a lunch box, because this boy buys hot lunch every day. He buys hot lunch so he can sit with the rest of his class at the table and look around and see that they are eating pasta and mandarin oranges in a cup and hotdogs with the bun and maybe decide that if they like it, he might, too.

Now he loves mandarin oranges.

I have never carried an invitation for a birthday party.

A lot of times he twists my handle with his hands, the one you’re supposed to use to hang me on the hook. He grips it tightly and twists it over and over. Twist, twist, twist. Usually he does this on the bus ride back and forth from school, when things are noisy and his stomach is full of fluttery butterflies.

Twist, twist, twist.

He started twisting my handle when he was just a little boy, with small, pudgy fingers. Now, his hands are long and he has a callous on his two middle fingers because he puts them in his mouth when he’s nervous. He bites his nails.

On the way to school he is wound up like a clock. He is all wiry nerves and tight coil springs. On the ride home, he is calmer—his hands fluid and limber.

I have felt shame in his fingers. I have known his hope, and his hesitation, and sometimes, sparks of bright, dazzling joy.

For a while he would chew on the handle. That drove his mom crazy. She said it was disgusting to chew on me like that. And, well, he tried to remember. He tried to keep her words in his head even when there are so many words floating around like snowflakes falling from a dark gray sky.

Thumbs up sit down please come back thumbs down not in your mouth Jack.

I’ve been to school, and to summer camp, and to water parks and on airplanes and in hotel rooms.

When he was nine, the boy started to memorize the roads on the way to school. Together, we’d sit in his seat and he would murmur the street names to himself.

Oakwood, Starwood, Ledge.

That year, everything inside my pouch was a bright royal blue; blue ruler and blue notebook and blue folder and a blue plastic box for his pencils. Blue made him happy.

In fifth grade I carried a single dollar bill every Thursday, wrapped carefully in a Ziplock bag, the kind you use for sandwiches. The boy packed the dollar in the bag on Tuesday nights because he was so excited for something called Snack Shop, where he could buy an ice cream after lunch.

I have been thrown to the floor in rage. I have been a reminder, a chore, part of a routine to nudge this child towards independence.

Jack put your backpack away put it away now you know where your hook is.

One year, this boy’s older brother got a new backpack; a bigger one, black with yellow trim. So the mom asked if he would like one too, but he refused. I like to think he refused because he likes me so much and we’ve been through a lot together, but it’s probably because he likes things to stay the same.

He hates change, this boy. He hates detours because of construction and two-hour delays in the wintertime. He feels better—calmer—when the bus is on time and school starts when it should and lunch is not delayed because of standardized testing.

Whew, standardized testing. Don’t even get me started on that. Let’s just say standardized testing is very, very hard for this particular boy. It is stressful and confusing and at the same time meaningless.

I have felt how much he longs to be like the rest of them, to trade Pokemon cards and chatter easily about swimming and math and lunch and teachers. To forgo constant conversation about street names, and instead high-five boys who pass the seat where he’s sitting.

But he can’t. He doesn’t know how. So instead he and I sit alone in the first seat behind the bus driver and he whispers.

Two more miles for school Oakwood Starwood Ledge one more mile.

It’s the middle of August now. Summer school and karate camp are over, and I’m hanging here on my hook in the dark closet.

Outside, the grass has yellow patches and the flowers are dry. During the day everything feels hot and still, and yet the air is nearly pregnant with change. The boy knows it. I can hear it in the way his voice rises and falls, rises and falls outside of the closet.

Who is my teacher not a para again what day is Snack Shop what time is the bus coming.

At night, there is a teasing chill to the air; the harbinger for autumn’s rich colors, and in just a few short weeks, this tall boy will sling me over his shoulders and climb the steps of the bus to sixth grade.

With each step, he is one foot further from the pudgy, diaper-wearing preschooler he once was, and another foot closer to the teenager, young adult, and man he will become.

I think if he could write a note to the world and put it in my pocket for me to carry back and forth so everyone could read it and share it and understand it, it would say something like this:

I am trying. 

This is Jack's preschool picture.

This is Jack’s preschool picture.

 

 

Dear Adam Levine: About Your New Song

Dear Adam,

I saw you in concert about seven years ago outside of Boston, when Maroon Five opened the show for the Counting Crows.

Ever since then I’ve really enjoyed watching your rise to meteoric stardom.

I actually have a lot in common with your lovely wife, Behati Prinsloo. We both have unusual names, for starters. I am Carrie Cariello and she is, well, you already know her name.

And we also sort of look alike. I’m probably about fifty pounds heavier than she is and my hair is a little shorter—to make it easier when I need to run out the door and drop the kids off at karate and baseball and stuff.

You know what? Never mind. We look nothing alike.

Aside from your obvious talent—just love that song Sugar, by the way—you seem like a nice person.

I wept when I read about how you stretched out on the floor of a locker room next to a 10-year old fan who had Down Syndrome, because he was overcome with panic at the thought of meeting you, his rockstar idol.

That’s why I wanted to write and share a story about your latest song, “This Summer’s Gonna Hurt Like a Mother—–.”

At first, I didn’t think much of it. I mean, I heard friends of mine, mostly parents with young kids and teenagers, complain about the title and the lyrics. But then my 11-year old son, Jack, downloaded it onto my phone.

Like a lot of people diagnosed with autism spectrum disorder, Jack is fascinated with music. He plays and thinks and talks about it constantly. It’s the first thing he listens to in the morning and the last thing before he closes his eyes at night. I think he hears music even when there’s none playing. You might say it is the symphony of his subconscious.

Listen, Adam. I get it. I’m not exactly an angel. I’ve been known to let a few bombs fly every once in a while, especially if I stub my toe on the corner of the kitchen stool or something. That really hurts!

But I have never—even once—announced, “Hey kids! Dinner is going to taste like a mother— !”

Or, “Man, getting a splinter out hurts like a mother—!”

Or even, “Today is as hot as a mother—!”

I know, I know, the radio bleeps it out. But anyone who rides the bus to middle school knows what that word is. It’s not so hard to figure out.

Like many people who have autism, language is hard for Jack. It slips in and out of his grasp like a cold-blooded snake. It is the skill he works the very hardest for, and the first to go when he’s under stress.

He mixes things up; for my tall, blue-eyed boy, finding the right phrases and descriptions is like searching for the proverbial needle in a haystack.

“I need it the sauce. For the chocolate on my ice cream.”

Yet he takes every word he ever hears, whether he understands what it means or not, and locks it away inside his brain the way your or I might close our fists around a copper penny. He holds on to it tightly, until one day he drops it to the floor.

Let me give you an example. A few days ago, Jack asked me, “Why do ladies. For breest cancer. They get it only for October?”

At some point last fall, he saw a flyer or read an ad for Breast Cancer Awareness month. And then he stored it away in his magical mind, only to have the penny resurface again nearly ten months later.

Like many kids who have a diagnosis, Jack has to go to something called Extended School Year, or ESY for short. It’s basically summer school, and he hates it. He’s always hated it.

This summer, though, was different. They did a lot of fun projects and I never once had to drag him, kicking and screaming, out of our minivan and past all the people staring at me in carpool and into the school with my black stretchy yoga pants sliding all over the place.

(Does Behati wear yoga pants out in public? I didn’t think so.)

He actually wanted to go every morning. So you can imagine how confused I was when I picked him up last Wednesday and he slumped next to me in the car; teary, upset, distraught, yet at the same time distant. He’d been so excited to go that morning because they were making wallets out of duct tape.

“What happened, buddy?”

“Nothing. Do not for ask me. I need the radio.”

“Jack—“

“NO! No talking.”

When Jack has decided he’s done talking, he is done. Finito. Finished. He is impossible to unlock. His thoughts and ideas and opinions and anguish stay sealed up tight behind an invisible, impenetrable wall like silent little pharaohs in a tomb.

But if I take my time and tiptoe very slowly and knock ever-so-quietly on the wall, he will eventually answer.

“I could not almost. Make for the duct tape WALLET.”

“Why? Jack, what happened?”

“Nothing. I said for a bad word.”

See, another thing about Jack and autism and language is that he is literal. Women-only-get-breast-or-breest-cancer-in-October literal. If someone says it’s raining cats and dogs, he actually looks up into the sky to see if a pug is going to fall out of a cloud.

And when another student in summer school shows up one day with a sunburn, and the teacher says to that student, “Wow! You got a sunburn! Does that hurt?” Jack connects the dots. He connects sunburn and takes out the sun part so it’s just burn and hurt. Then he thinks of your song, and he shouts out, “That must hurt like a mother—–!”

Then he gets into trouble and for a brief time, the coveted duct tape wallet project is painfully suspended, dangling in mid-air just out of his reach.

Adam, I like playing with language too. I like pushing the limits and testing the boundaries and teasing out nuances and metaphors from simple phrases. Mostly, I like to use words and sentences to give shape and color to our family of five children and our life with autism.

As a musician, I bet you re-read and re-play your words constantly, trying to make sure the chords and notes and phrasing is just right. Not me.

Once I write a piece, I hardly ever look at it again. It’s feels too personal, too raw. But one time, a magazine printed an essay I published about traveling with a child who has autism, so I read it again. A particular line stood out to me. I almost couldn’t believe I wrote it—that it came from my own brain—because it so perfectly captured my never-ending negotiation with the spectrum disorder.

“Every day, I fight for his place in your world, and every day I fight for your place in his world.”

This is exactly what I do day in and day out. I try to fit Jack and the world together; not exactly like two pieces of the same puzzle, but more like, oh, I don’t know, maybe tentative hands reaching toward one another.

Imperfect and messy, yet patient. Willing.

I guess you could say your latest song presented me with an opportunity; a chance to explain the whole penny-in-the-fist thing to people.

And it gave me a chance to educate Jack about swearing, about how some words are nice and others are mean and how it’s important to understand the difference.

Mostly, it gave me the chance to write and tell you that you have power. You have influence. What you create and write and sing is important.

I doubt this letter will ever find it’s way to you. I doubt you’ll ever read my words. But if by some chance you do, maybe the next time you sit in your studio or with your guitar to write a new song, you’ll think of more than a platinum album or a Grammy award.

You’ll think of autism and language and bright, shiny pennies.

You’ll think of a boy named Jack, with his light brown crew cut and almond-shaped eyes.

You’ll think of my son, perched on the edge of his chair in a warm classroom, twisting a roll of duct tape back and forth in his hands.

“I said it. For like Adam Levine.”

Best,

Carrie Cariello

(Jack’s Mom)

Jack, on his way to summer school.

Jack, on his way to summer school.