There is No Cure for Autism

Ever since I was little, I wished I was an artist. I’ve always wanted to be able to draw the pictures I see in my mind with perfect clarity on a white canvas or blank sheet of paper.

Landscapes.

Sunsets.

Women with parasols, children splashing in puddles.

Autism.

But I am terrible at drawing. Noses are askew in faces and the puddles look like milky blue blobs.

Autism is especially hard. At first though, it seems simple—almost black and white.

It’s an 11-year old boy who sleeps when he’s tired and eats when he’s hungry. He wakes when he’s rested and stops when he’s full.

When his body needs to move, he jumps up and down quickly—three, four, five times in a row.

He screams when he’s mad.

He likes music. He likes order. He likes routine.

If he has a question, he asks it. If he has something to say, he says it. He doesn’t internalize, or stew, or hold grudges.

See? Simple. No mystery here. But then I add the color; the spectrum’s crazy, chaotic splish-splashes of orange and blue and red and purple.

He’s not tired at 4:00 am.

If we let him, he would eat nothing but pancakes, ice cream, waffles, and Goldfish crackers.

He jumps in church. He jumps at the movies. He jumps in the grocery store, during science class, and in the library.

His emotional pendulum can swing wildly between rage and joy, distress and frustration, almost as though he has little or no memory of his mental state.

He is afraid of the wind. He is afraid of static. He is afraid of snow, and cold water, and for a while, orange detour signs in the middle of the street. He is constantly on guard, and he only relaxes in the middle of the night, underneath Melatonin’s watchful gaze.

He plays music constantly. He cannot breathe without it.

His expressions can be garbled–he mixes up words and phrases. He can be difficult to understand, and he often hesitates before answering a question. He has no filter.

He is rigid  and unbending and inflexible. He has to eat waffles on Thursdays and pancakes on Saturdays. He goes berserk if we’re even two minutes late for anything.

And then, in the midst of the spectrum disorder’s black and white and color canvas, there is the thinnest pencil line. It haunts me like a ghost.

There is no cure for autism.

There is no cure.

He will never be cured.

Jack will never be cured.

He might always get up before the sun rises and jump around in church and ask about toilets. He might always need Melatonin to fall asleep and Clonidine to remain calm and pancakes to stay happy.

He will always have autism.

I don’t believe there is a cure because I don’t believe you can cure the way a person thinks. It’s just that black-and-white-simple for me.

Sure, there are plenty of things to help. There are weighted blankets to improve sleep. There are programs he can go to for better social skills and, when we need it, a tiny white pill for his crushing anxiety.

We have done these. We are doing these. We will forever and ever continue to do these.

But I will not search for a cure. I will not chase after the effervescent dragonflies the autism industry churns out regularly. I will not buy a hyperbaric chamber or enroll him in stem cell therapy or withhold his vaccines.

Contained within the black and white and color and pencil sketch is a final hue. It changes depending on the day; sometimes it’s the milky-blue of my muddled puddles, and other times it’s a soft, tender peach.

I will never be free of this. I will never be free of autism.

The good Lord willing, the rest of my children will move out and move on and marry and work and have children. And although I will always, always worry about them, it is not the same. It is simply not the same as worrying about a boy with a diagnosis, who can’t regulate himself enough to sleep, or be still, or take a traffic detour or listen to anything but the Beatles.

Last week, Jack begged me to buy him more CD’s so he could make more playlists. He already has a million CD’s and watching him manipulate songs into long, disordered list after list drives me crazy, so I couldn’t bring myself to buy them.

It also gets on my nerves the way he refuses to earn anything. It’s not so much that he has no concept of money—which he doesn’t—as much as the way he is learning to expect things; to receive simply because he demands.

So after he followed me around for a full day and hounded me ceaselessly to buy a 100-pack of CD’s he’d found on Amazon, I screamed at him no and he screamed back at me yes. Then I ran up to my room to hide because I am a mature adult.

I flopped on my bed and thought about earning, and autism, and progress. I decided even if he doesn’t want to earn money, there is other currency. In the spirit of baby steps, I decided he had to do three nice things for me.

Motivated by the idea of a new, shiny stack of discs, he eagerly came up with two ideas.

“For you, I will make breakfast. And put away the dishwasher.”

“Okay, you mean put away the dishes. And breakfast is fine but I want eggs, not pancakes.”

“For you I will make pancakes.”

He could not come up with a third idea, so I suggested he write me a nice note. Or, even better, he could sit at my computer and write about himself.

See, I am always desperate to learn about Jack from Jack.

The next morning he made me breakfast—two scrambled eggs and one pancake—and carefully stacked all the clean dishes from the dishwasher. Then he stomped off to the computer to write his sentences, reminding me over his shoulder that when he was done, I needed to order the CD’s.

“For my three things. I did them. The pack of one hundred.”

He hovered next to me while I ordered them online, and when he left the room, I took a quick peek at what he wrote.

My stomach just sank. It really did. Here he is, eleven years old, and the truth is he has trouble stringing together a cohesive sentence.

I am not an artist. Instead, I have to paint my pictures through words and sentences and memories and stories. Like this one:

My son is standing before me in the kitchen. He is wearing a grey t-shirt with Under Armour written across the front, and royal blue athletic shorts. He is very, very distraught, but I am not sure why.

I feel afraid, the way I always do—not of his temper or rage, I am not afraid of that yet, but a nagging, residual, unsettled fear that I do not know him and I will never really know him.

Yet I know every single thing about him; from the freckle on his arm to the way he clears his throat when he’s nervous, his favorite stuffed bunny that he sleeps with every night and how he remembers every license plate he’s ever seen.

He bangs his fists on the counter, and then erupts in hysterical giggles, only to grab his head with both hands and start screaming again.

“The CD’s! For TODAY they should be here FOR TODAY today today TODAY.”

I take him into our little office. I open my laptop and log onto Amazon and show him the date for delivery. Tomorrow.

Just like that, his storm is over, nearly as quickly as it began. He slumps against my shoulder, breathing heavily, and turns and walks out the door.

Alone for a moment, I click open his file, the one he named “Jack’s World,” and I read it again.

Not about my autism. Because it is here some things in the world are weird, stupid so scary.

Everything can get better but world changes every second minute hour day week Month year decade century and time.  

I don’t know how to make it stop. It is not for my brother Joey or anyone else only for me.

The things that are important to you like if you want to go see a movie that is coming out in a few months like the peanuts movie that is coming out on November 6th witch is true and when I want so many Cds for the Beatles to play. take your time and wait.

It is chaotic—his phrases seem disorganized and scrambled—yet in between the words, he offers me order. He offers me grace. He offered a glimpse into his own scary life with autism; a world of which he, too, will never be free.

Maybe I cannot cure the way he thinks, but I can appreciate it. I can love it. I can make room for it .

I can take my time and wait for my boy named Jack.

Joey and Jack

Joey and Jack

 

 

 

 

This is Childhood

For my children,

Remember the other day when we were driving to the pool, and Jack was playing all of those songs by the Beatles, one right after the other? And when the song Yellow Submarine came on I told you guys how I used to listen to that song when I drove in the car with my father?

Well, at that moment, something sort of big and profound and important and funny occurred to me.

This is your childhood.

I mean, like right now. Right this minute we are making memories and building character and creating tradition and shaping your future.

Scary.

I know you don’t remember the day we brought you each home from the hospital; boy, boy, boy, girl, boy—five babies in less than six years. Between the diapers and the autism and the no sleeping and the tiny fingers and toes and mittens and spit-up, it was at once the worst of times and the best of times.

You believe things just because I tell you. You believe dinner will be ready in a half an hour and your teeth will fall out if you don’t brush before bed. You believe in God and the magic of Christmas and that smoking cigarettes is terrible for you, all because I say it.

I want you to remember everything you can. I want you remember the bubbles we blew and the arguments we had and lies you got away with and the ones you didn’t, and how there was a stray cat in our yard who we named Mississippi.

I want you to remember picking up dog poop from the grass and the way you argued in the back of the minivan about whether the guy in the band was named Ringo or Dingo.

This is childhood. It is simultaneously unique and ordinary.

I hope you remember that I let you believe things; that I didn’t argue when Charlie said he could walk on the ceiling or Henry thought there were little elves living in Hannaford’s who stay awake and shine all the apples in the middle of the night.

I want you to remember your first sunburn, the first time you felt the icy-cold stab of jealousy, your first kiss.

Your first sleepover, and the year you went trick-or-treating for the last time.

The time they closed McDonald’s Playland because your sister peed in the ball pit, and the time all five of you were carsick on the ride to New Jersey to visit Uncle Frank.

This is childhood.

I want you to remember how some days, autism was a struggle, and that we didn’t always have the answers to the riddles the spectrum disorder perpetually posed.

But autism never stopped us, and we never once let it stop him.

This is childhood. It is full of regrets and mistakes. It is precious and tender. Hold onto to it for as long as you can–hold it close and tight and dear, like a beautiful butterfly with fragile wings and a beating heart.

I hope you remember the nicknames we have for each of you; Jo-Jo, Buca di Peppo, Boochie, Buca.

Jack-a-boo, Tobes.

Charlie-bear. Rose-a-pose. Henry-Benry, Squadoosh.

I hope one day you can understand why I had to put most of your school papers and worksheets and drawings into the recycling bin, because if I didn’t, we would have been buried alive under mountains of notebooks and poems and elephants you drew in art class.

But I saved the most specialist ones; the hearts for Valentines and the self-portraits. I saved the ones that made Daddy and I laugh.

While we are on the subject of school, I have a confession to make. Come closer, so I can tell you. Here, Henry, sit on my lap and the rest of you crowd around.

Okay, here’s the thing. I don’t care about accelerated math or special reading groups or a report card full of check marks next to the box that says exceeding expectations.

I get excited when I glance over the morning and watch Joey butter Henry’s toast, or see Charlie help Rose fix her headband. I get excited when Jack feeds the puppy and tenderly bends over to stroke Wolfie’s soft ears.

And after a particularly bad day, when Jack’s tantrums were loud and long and fierce and I didn’t know how to calm him down, I found a letter on his bed from Rose, reminding him that even in the midst of his wildest temper, he is loved.10628311_10206764445616444_5528852753416542830_n

Of course, I’m pleased when you bring home a spelling test with all the words spelled right, or when you master your multiplication tables or finish an especially hard book.

But honestly, with a tutor and after-school help and extra books from the library, nearly anyone can master algebra and calculus and science. It is the special person who can master empathy, courage, love, and devotion.

This is the ultimate gift of an unusual brother, and the gift of autism in our lives. Slowly, the way trees shed their colorful foliage after a long, cool autumn, I have let go of life’s traditional expectations. Now I know that the brilliant leaves were just whimsy and decoration; the tree’s real beauty comes from it’s strong, resilient branches.

Thank you, Jack. You have exceeded all of our expectations.

I want you to remember that yes, we fought. Sometimes, as a family, we shouted and stomped and slammed. But we always, always figured out a way to make up and move forward.

This is childhood. It is finding the right balm to soothe the rawest wounds.

I know, I have a lot of silly little phrases, like the way I exclaim, “It as hot as a tamale!” when we step outside on a humid summer day. Or, “Buckle up, buttercup,” to remind you to fasten your seatbelt.

Now, the five of you roll your collective eyes and giggle, but one day you may find yourself repeating these very words to your own first-grader, third-grader, tween.

That’s how childhood works. You spend years absorbing and listening and rejecting, only to eventually return.

I would give almost anything to do it all over with each of you; to visit again your former selves and sing the lullabies and read Goodnight Moon. I long to hold your tiny toes and hear your tiny sighs.

Yet, I love who you are right at this moment, my 12-year old and 11-year old and 9-year old and almost 8-year old and 6-year old. I love everything about the part of life you inhabit. If I could, I would freeze you here forever.

I still have so much I want to tell you that I hope you’ll believe; that God is real and drugs are bad and sex should be special.

I want to tell you to never, ever try heroin, and to call us no matter where you are or what time it is or if you’ve been drinking. We will always pick you up.

Try to remember to make your bed in the morning, because at the end of a long day, it always feels really nice to get into a bed with sheets that have been pulled tight.

Don’t honk your horn from the driveway or the curb. Get out of the car and ring the bell.

Please know that all the times you begged me for help and I made you do it yourself was because I knew you could. I knew you could open the yogurt and set up the soccer net and wash the paintbrushes. I knew you were strong and smart.

A lot of people think childhood ends when you graduate high school or you head off to college. Others think it’s when you get married, or have your first baby, or start working full-time so you can save for retirement.

I used to think all of those things, too, but now I know. It never really ends.

Because of you, my boy-boy-boy-girl-boy, my childhood is alive, like a perpetually blooming flower beneath a never-setting sun. I can taste it and hear it and smell it and remember it.

You can’t possibly know this yet, but motherhood and childhood are like mirror images. They are at times tedious and confusing and frustrating, and yet they are colorful and special and beautiful. They are both fleeting.

One day, you will find yourself on the other side of the glass, looking at your own boys and girls. And when you do, I hope you think of bright red peppers on a hot summer day, or a soft yellow flower as you reach for your seatbelt.

I hope you can still sing all the lyrics to Yellow Submarine at the top of your voice, and smile when you realize that his name really was Ringo.

Henry & Charlie

Henry & Charlie

 

 

 

Riding the Short Bus

Dear Jack,

Remember when I told you I was going out of town to talk to a group of bus drivers at a conference?

In you robotic tone, you asked the question you always ask, “What will you tell them?”

And I gave you the answer I always give, “I don’t know yet.”

I mean, I knew I was going to talk about our family and you and autism, but whenever I stand in front of a group of people—whether it’s teachers or parents or church leaders or business people or bus drivers—I have a hard time deciding exactly what to share.

Like a teeter-totter on an abandoned playground, I vacillate between statistics and stories; research, and a life lived every day by a boy who has autism.

You are this boy.

(Jack, you may not know what the word vacillate means. It means to hesitate, or to waver. You could also say it means to waffle, but I was worried if I wrote waffle you would just start thinking about how you cook waffles every Thursday morning.)

I knew I should mention stuff like bus safety and fire drills, and how riding a crowded bus full of loud, antsy kids is very difficult you.

And yet, none of that felt quite right.

When I sat down and I looked at my notes, I decided I should just write a letter to you. That’s what I always do when I’m trying to figure out what to tell people.

Jack, I like to write you letters. I like to tell you all the things I think you would have trouble understanding if I spoke the words to you while you sat next to me on the couch or in the car.

And when I read the letters out loud, I think it makes people feel as though they can almost picture you standing in front of them while I talk; a tall 11-year old boy with a light brown crew-cut and glasses.

You first started riding the bus when you were two years old. We were living in Buffalo, and you had been diagnosed with autism for about six months.

At two years old, you did not say a blessed word. You didn’t know your name, or your address, or your phone number. You wandered away without a moment’s notice—in the mall and the post office and one day, right out the front door of the house.

At the time, it seemed ridiculously crazy to put a 2-year old on a bus. It seemed especially ridiculously crazy to put a 2-year old who could not say his own name on a bus. I typed up long lists of emergency contacts and phone numbers and details, while Daddy tried to figure out how to strap a GPS to your body.

A woman named Janice was your driver. She promised—and I mean promised—she would keep track of you and make sure you made it into the building. You looked confused when we buckled you in and I stepped off the bus.

I cried so hard when your 2-year old self rode away on that small yellow bus that I had a headache.

When we moved to New Hampshire you rode a small bus again to preschool, and eventually kindergarten. For two years you had a driver named Lily. Miss Lily, we called her. Miss Lily was kind of like a grandmother, with short, silvery hair and a gentle smile.

She was heartbroken the day you had a tantrum and kicked her. I was heartbroken too; for her, for you, for all of us. I walked up our long driveway thinking about how much I hated autism.

I know I want to tell everyone how hard Daddy has worked to connect with you from the very moment you were born; to understand his fussy infant and silent toddler and unexpected son.

How, for all of kindergarten, he got you off to school in the morning, and stood waving as the bus pulled away from the stop. Every morning, he waved. He hoped one day you would look out the window at him, and wave back.

He waved as the New Hampshire leaves turned brilliant gold and red and orange and eventually fell from the branches. He waved when the gray sky spit sleet and snow, and again when the warm spring rains made the trees green and vibrant once more.

He waved and he waited, waited and waved. Then one day late in the spring, your father walked back up the driveway with tears in his eyes.

“He did it. He waved back to me. He waved.”

When it was time for first grade, you went to the same elementary school as your older brother, Joey.

“I will ride. With Joey.”

Daddy and I sat in the hot, airless room during your IEP meeting and listened to the scattered objections.

It will be too loud for him.

There won’t be an aide with him.

We can switch him to the big bus later in the year, there’s no rush.

I knew with absolute certainty that they were right. It would be too loud and there wouldn’t be an aide and really, all hell could break loose at any moment during the five-mile drive to school and back again.

But I also knew with absolute certainty that we had to give you a chance. Your 6-year old self deserved a chance on the big bus.

In the overheated room, I said only one thing—just one single sentence.

“We have to let him try.”

On the first day of school, I was so worried we made the wrong decision. What if you started screaming, or threw a fit? What if you couldn’t handle the noise?

The driver’s name was Paul, and he was a kindly man with a gentle smile. Paul waved and said, “He’ll be just fine,” and off you went on the big yellow bus, the same one as Joey. You never looked back.

I wanted to share the way your sister Rose stood at the kitchen counter with me one afternoon, mixing brownie batter. And in that serious way she has, she said, “Jackie always sits alone on the bus. I feel so bad for him.”

I want to tell them that she is the only person in the whole entire world who calls you Jackie.

When you were in third grade, you had a substitute bus driver for a few months. He had long, wild hair and he wore a bandanna around his forehead. His name was Carl.

One afternoon the bus pulled up and I saw Carl speak to you. He seemed irritated. You came off the bus and told me, “He said I have to sit in the front. With the kindergarteners.”

You were confused, so Joey stepped in to explain.

“Mom, the bus driver doesn’t like how Jack stands before the bus stops. He told him if he doesn’t stay in his seat he has to move. I don’t think he understands about Jack, how he doesn’t get things like that.”

I called the school and asked if they could just remind Carl about your IEP and the diagnosis and all that and they said they couldn’t. They couldn’t tell him about your autism because, according to some regulation, it’s private.

Private? What is private about autism? I thought to myself.

It feels like the people who make these laws and regulations don’t understand the fragile, tenuous life that is the spectrum disorder. They don’t understand how a simple breakdown in communication could shatter a young boy’s heart, because you would be devastated to have to go back to the little bus with an aide. Riding the big bus and choosing your own seat and managing the sounds of kids singing and clapping trading Pokémon cards has been a victory for you.

It’s not really up to me to make laws, or change policies, or write handbooks. But it is up to me to defend your victories, no matter how small they are.

So the next day I told Carl. I told him you have autism and if there’s problem he can either talk with me or tell you very carefully, very directly, to stay in your seat.

“Awesome,” he said. “I didn’t realize. Good to know.”

In fifth grade you had Mrs. Anderson as your bus driver. She had long silvery-white hair and a happy smile and, despite her daily cargo of pre-tweens and middle-schoolers, she decorated the bus with spiders and streamers for Halloween and played music every day. You sat in the seat right behind her, and chatted about songs. And when you became obsessed with bus routes and street names, you chatted with her about that too.

You loved Mrs. Anderson. At first I thought it was because of the music and the decorations and the routes, but then I realized that, although you still sat alone on the bus, you felt like you had a friend with you for the ride.

When I see the bus drivers at the conference next week, these are a few of the things I want to tell them.

I also want to tell them I know how hard their job is.

I want to tell them they are an important part of every student’s day.

I especially want to tell them they make a difference.

See, Jack, in school you learned how to write your name and use those pesky Cuisnenare rods, but on the bus you learned how to stay in your seat until the doors opened.

You learned how to bravely dip your toes into the cool, deep water of independence, even when autism threatened you might sink instead of swim.

And one spring morning, you learned how to look out the window of that big yellow bus, and wave good-bye to your father.

Joey & Jack, the first day of school.

Joey & Jack, the first day of school.

Autism and Body Mass Index

Last week we had my 11-year old son Jack’s check-up, and my stomach sank when the doctor quietly pointed out his higher-than-average body mass index on his chart.

You wouldn’t know this to look at him; he’s pretty tall for his age with the longest, skinniest legs in the world. But he’s solid, and like many kiddos on the autism spectrum, he has low muscle tone.

“You don’t need to worry just yet,” the doctor said kindly while Jack tried to remove the stethoscope from his neck. “But you do need to be watchful.”

Watchful? Is there any single aspect of this boy of which I am not watchful?

A part of me feels like I cannot take this on; I cannot work on one more single thing with him.

(Things we are currently working on: screaming, swearing, keeping his seatbelt on in the car, screaming, saying please and thank you, using his fork at dinner, sleeping past 5:30 in the morning. Oh, and the screaming.)

But another part of me, a part that has more energy and isn’t tired of correcting him and redirecting him and shushing him and asking him to use his words, feels as though I owe it to him.

If he’s overweight, it’s my fault. I am the one who buys the food and cooks the food and sometimes, orders the sweet and sour chicken food to be delivered in a brown paper bag.

It’s my fault that I let him play on the IPad because he’s too distraught for hide-n-seek.

It’s my fault I let him have ice cream after dinner every night because his world would just fall right apart if he didn’t get his ice cream in the red bowl the minute he’s finished eating.

If one of my other four kids—and I won’t say normal or typical or whatever, I’ll just say other—started to gain weight, I would make sure they moved a little more and maybe snacked a little less. Yet, like everything in Jack’s world, autism has threaded it’s annoying wormy head into the matter and complicated it.

For the most part, it’s a pretty simple equation: burn more calories than you consume and you will lose weight. Or, burn the same as you eat and you will maintain your weight.

But for my son, the calculation is a little different. You have to factor in the way autism demands he have the same dessert every night and makes him apprehensive of organized sports’ social subtleties.

Jack loves the ritual and tradition of food; pancakes on Saturdays and waffles on Thursdays, popcorn at the movies and popsicles at the local pool. He loves to bake large, elaborate cakes for everyone’s birthday. Oh, and let us not forget his Oreo phase, when he begged to try every flavor Nabisco ever made.

He is one of the few people I have ever met who wants to eat breakfast the second he opens his eyes. More often than not, I walk downstairs first thing in the morning and find him surrounded with his bowl of cereal and milk.

“Mom. I am happy today to find. The Honey-Nut Cheerios.”

We had years where he refused anything unusual or new. As a toddler, he would only eat yogurt. Then as he got into kindergarten and elementary school, he wouldn’t touch the stuff. In fact, he wouldn’t eat anything with a wet texture, like applesauce or fruit.

Now, he is starting to try new things, like carrots dipped in ranch dressing and coconut shrimp. He is once again eating yogurt—but only Chobani vanilla-flavored from a particular grocery store on the other side of town.

(Please don’t ask me why, because I have no idea how or why the vanilla Chobani yogurt from Hannaford’s is better than the vanilla Chobani yogurt from Market Basket.)

I know we are lucky. I know many, many families struggle to get their spectrum kiddo to try a bite of anything at all. I am grateful that the dinner table is no longer autism’s battleground, but as usual there is no moderation when it comes to which way Jack’s pendulum swings.

Over time, food has become very, very important to him; planning it and shopping for it and preparing it and cooking it. His face lights up at the thought of a new recipe or a different kind of cookie.

It makes sense. Food lends order to his day: breakfast, lunch, dinner, dessert. It is concrete. It is soothing. It tastes good.

The other problem is Jack hates—and I mean hates—exercise of any kind, especially team sports.

We tried soccer. Disaster.

We attempted baseball. Nightmare.

We dipped our toes into the icy water of the swim team. Unsuccessful.

Jack and autism, by their very nature, are adverse to team sports and playing well with others and not being bossy or losing interest or staring at the ball with a blank expression as if it was an alien life form. So far, the only physical activity we’ve had luck with has been karate.

This spring he also ran track for the Special Olympics team, but he refused to do it unless his brother, Joey, did it too. Even then, it took a fair amount of arguing in the car each week before he would get on the field.

This isn’t to say he doesn’t move throughout the day. If self-stimulation, or autism’s charming side effect defined as repetitive movement, were an Olympic sport, Jack would win a gold medal because a lot of his time is spent grunting and rocking and hopping around the room.

We call it his zoomies. Apparently, zoomies do not burn off after-dinner bowls of ice cream.

And although he hated swimming on a team, whenever we go to the pool in town, he jumps off the diving board so many times it makes my head spin. High jumps, cannonballs, and straight drops into the cold water.

I suppose I could create a schedule for him—a matrix with times and meals and healthy snacks and all that. I could make a rule that he has to ride his bike up and down the driveway for at least an hour, or play tag with his brothers and sister outside.

But I spend so much of my day—my life—begging my rigid boy to flex and bend that frankly, it feels crappy to start asking him to count calories and manage a fitness routine. He is already bound by his own self-imposed rituals and rules, and I am reluctant to add any more.

Our culture is not-so-neatly intersected into two somewhat polarizing, categories; there is the love-yourself-as-you-are category, and the health-obsessed category. When it comes to Jack, I feel as though I am standing at the intersection.

See, I don’t care if Jack is overweight or pudgy or round. I don’t care about his higher-than-average body mass index or lower-than-average muscle tone.

I don’t care if he never steps foot on a soccer field or shoots a three-pointer on the basketball court the same way I don’t care if he marries a man or a woman or a purple muppet from Sesame Street.

This is what autism does for me. Having a son like Jack forces me to drag all the ugly, gross, embarrassing parts of my psyche into the light and examine them. It forces me to understand exactly where I stand at the crossroads of love and health, hope and fitness and food.

I want him to be happy. I want him to love and be loved, and I want him to have all the things he wants for himself.

I want him to enjoy the taste of cold, chocolatey ice cream on his tongue after dinner and the rush of water over his body after a jump from the diving board.

Mostly, I don’t want him to have to endure any more shame, or insecurity, or embarrassment than he already does.

“What is for me weird. They said weird for me.”

“Why am I a lonely boy.

“Mom. I do not want it. I do not want this autism in me.”

But like the spectrum itself, there is no one solution to Jack’s higher-than-average body mass index. Whether it’s swearing or screaming or seatbelts or ice cream, we can only take it a day at a time.

Today, we will remind that his body needs good food in order to be strong and healthy and fit.

Today, we will remind him that he always feels better when he rides his bike or swims in the pool or dances to the music.

Today, and every day, we will remind him he is loved.

And we will hope for the best.

Jumping into the pool.

Jumping into the pool.

#Autism

I tend to be fairly slow on the technological uptake, so it took me a while to understand what hashtags meant. At first I thought it had something to do with search engines. Then whenever I read a hashtag, I thought of hash brown, and I got hungry.

Eventually I figured out that they are the subtext of the conversation; the implied meaning or opinion.

#hashbrownsaregood

Last week, on the first day of summer vacation, our 6-year old Henry broke his leg riding his scooter down the driveway.

I’m not sure I can adequately capture the level of chaos immediately following his fall, but I will try. Let me start by saying our family is not very good in emergencies. We do not band together efficiently, or even coherently, to care for the injured party.

Instead, we shout over one another. We hold our heads in our hands and gnash our teeth. We race around like crazy people for ice and band-aids and tissues.

Generally speaking, it’s bedlam, and this time was no exception.

Let me also say that, except for my husband Joe, my son Jack is pretty much the last person I want around me in a crises. He is distracting. He is a nuisance. He is like a fly buzzing around your head while you’re trying to put out a forest fire, mostly because of his a tendency to fixate on the least useful—the least helpful—aspect of the matter at hand.

This time, it was brownies.

Henry:   [perched on the counter, clutching his leg, screaming, crying, wailing]

Joe:         Carrie, he needs to walk on it.

Jack:       We need to make brownies. You said. For brownies.

Me:         He’s screaming, he can’t walk on it. Maybe we should take him to Urgent Care.

Jack:       Brownies, brownies, brownies.

Henry:   [shrieking as if someone was amputating his leg.]

Our other three children: Is Henry dying what happened where is his sneaker are we still getting pizza Henry does it hurt why don’t you take him to the hospital he’ll probably never walk again.

Joe:         I think we should take him to the ER.

Me:         What about Urgent Care? They take X-Rays there.

Joe:         No they don’t. Stop talking about urgent care! Will you stop bringing it up? I think we should go to the ER.

Jack:       BROOOOOOWWWWWNNNNIIIIES!

In moments like this I realize how, in our house, we live autism out loud. It isn’t a secret. It isn’t a subtext, or even a hashtag.

#oursonhasautism

#hisnameisJack

#heiseleven

Jack’s three brothers and one sister all know he is diagnosed with autism, and with the exception of our oldest son Joey, our kids have lived with the spectrum disorder all their lives.

Autism is their background noise: it is the steady hum of Mozart and Alicia Keys, and most recently, the Beatles. It is the tympani of baking pans and tantrums and stimming.

I can’t say we ever really had a game plan for when or how to tell them about it. We sort of waited for them to bring it up, and then we had “The Talk.”

You know, the Your Brother Has Autism and That’s Why He Screams/Jumps/Hardly Sleeps and Can Remember that Daddy’s Birthday Fell on a Tuesday in 2004 talk.

Also known as the Your Brother Has Autism and That’s Why He Just Asked the Cashier How Many Teeth She Has talk.

Or the Your Brother Has Autism So Please Do Not Touch the Radio One More Time Because He Will Scream talk.

Although each conversation took place at a different time and place, all four of the kids asked the same questions.

Where did he get it?

Will he always have it?

Can he die from it?

Will he get married?

Can he have kids?

We answered them honestly and carefully, and gave them as much information as we ourselves have; yes, Jack will always have autism. No, he won’t die from it, and we don’t know if he’ll get married or have kids. We explained he was born with it—that an unusual twist of genetic fate brought us a baby boy who thinks in color.

If Joe was out of the room I told them that he got it from Daddy’s side of the family.

#justkidding

#noI’mnot

By living his diagnosis out loud, I guess I hoped they would learn to appreciate autism’s many sides and angles; like a brilliant diamond, their brother’s spectrum disorder has thousands of tiny facets and surfaces. Yes, it can be sharp, and acerbic, and his screams can cut glass.

But it can also be funny and colorful and interesting and bright. It can be shiny.

Practically speaking, this means we refer to it a lot, both to Jack and to the rest of our kids. We say things like, “Jack, your autism is making your brain want to listen to Yellow Submarine three-thousand four hundred and twenty times. Play a different song.”

Or, “Joey, can you grab the headphones? Jack needs them for the fireworks again this year, because his autism makes his ears so sensitive.”

#nofilter

Looking back on all of the times we’ve talked about it as a family, I realized there’s been an unspoken undercurrent after all. There has been a hashtag.

I’ve never asked them how it feels to have a brother with autism. We never asked them what they think of it, or how it feels for them, or if they’d change it.

I have no idea what it’s like to grow up alongside of Jack, what it’s like to have him scream about baking brownies when your leg is broken, or sit next to him during dinner when he rolls his piece of pizza around in his hand before he eats it.

What’s it like to have a brother who wakes you up at 5:30 on your birthday because he’s too excited to wait another minute?

How does it feel to see your older brother walk through the hallways at school accompanied by an aide, or scream during fire drills, or sit all alone on the school bus every day?

I decided to ask, and this is what they told me.

Joey, age 12:

I have mixed emotions about it. Sometimes it feels like you have different rules for him, like when you make us turn off the computer and go outside but he gets to stay inside and play his music. 

I worry about him. I think he could get married but I can’t really imagine him ever being a father. You know? It’s hard to picture him as a father.

He is so smart, and I’m proud of him. I know it isn’t always easy to be him, to have his autism.

Charlie, age 9:

Jack and I don’t really like the same things, so we don’t play together too much. He doesn’t like badminton or football, but he likes to sit next to us when we play chess. He likes his music.

It’s getting scarier when he gets upset. He’s getting louder and I’m not sure what he’s going to do next.

I think he’s the smartest one in our family, because he can remember so much.

Rose, age seven:

When I hear him jumping around downstairs in the morning, that’s how I know it’s time to get up. He’s like my alarm clock.

He gets mad sometimes. You know? Like if the radio isn’t on right or he doesn’t like a certain restaurant.

But you have to just be gentle with him. Use gentle words. In the morning when we eat breakfast together and I see he’s using his fingers for his cereal, I just put the spoon in his hand to remind him. He’s the smartest person I know, because he remembers every single thing.

Henry, age six:

Whaddya mean, how do I think about autism? Autism is my brother. It’s Jack. He’s very smart. He knows everyone’s birthdays and when gum was made.

Throughout the week, bits and pieces of my conversations with them floated in and out of my mind. I thought about how, with words and worry and broken crayons and sharpened pencils, they sketched a vivid, brilliant picture of the diamond that is their brother Jack.

Like a painting that’s been hanging on the wall forever, I thought I knew almost everything about Jack’s spectrum disorder. But I looked at the picture again with my children, and saw autism’s details through fresh, young eyes. I saw deep jewel tones and sunny pastels. I saw parallel play and regulation and behavior modification. I saw their concern, and their hope, and most of all, their admiration.

He is so smart.

He’s the smartest one in our family.

He’s the smartest person I know.

He’s very smart.

However, it was Jack himself who added the final, colorful brush stroke to his own landscape. He reminded us that even in the heart of chaos, he too has something to give.

“I wanted to make brownies. For Henry to feel more better.”

#autism

(#fortherecordtheydotakex-raysaturgentcare)

Henry, on the last day of school.

Henry, on the last day of school.

Henry, on the first day of summer.

Henry, on the first day of summer.