What Does Autism Awareness Even Mean?

April is Autism Awareness Month.

I’m not sure when this tradition started. Does anyone out there know? I would research it but I’m in the middle of eating a huge, yummy cinnamon roll from Cinnabon and I don’t feel like multi-tasking.

But it’s a curious thing, this awareness.

When my sister and I were kids, we would play a game where we’d say a word over and over again until it lost all of its meaning.

aware aware aware aware aware

Then we’d try to think of as many rhymes as we could.

Aware, despair, somewhere. To stare.

But what does autism awareness really even mean?

I know, it a chance to celebrate unusual, to rejoice in ideas like inclusion and integration and bright, colorful days. It’s an opportunity to educate the public about why our kiddos may throw huge tantrums in Costco or jump up and down in the aisle at the movies. It’s good stuff, this awareness.

When Jack was about nine, he would lock himself in the bathroom at 4:00 every single afternoon and have the most horrific bowel movements I’ve ever seen. He would take all of his clothes off and moan and wail. Then he would run all over the house and make poop-footprints on the floor and splotchy handprints on the walls.

For the entire year, every afternoon at about 3:58, I pictured myself opening our front door, walking outside, and never coming back.

Does this story make you more aware of autism?

Aware, beware, nightmare.

If I tell you how sick of the whole cake thing I am, will you understand autism any better?

Because I am sick of it. I am sick of the ceaseless talk about cake and making of the cake and washing of the pans. Never in my wildest dreams did I ever think I’d say this, but I am sick of cake.

Ever since he announced he wanted to be a baker about six months ago, Jack has full-on perseverated about this topic. I picture his brain like Candyland, only instead of fun candy and characters, there are long, crisscrossing tracks of cupcake tins and tubs of frosting and sprinkles.

But here’s the thing. He’s not getting any better at it. He’s not exactly mastering the art of baking, or even staying with the project long enough for the pans to go into the oven. Basically, he wants to crack the eggs in the beginning and frost the cake at the end.

It is frustrating and painful to hear him talk about something he dreams of, yet have no idea how to give him the tools to accomplish it.

This spring we went to the Caribbean for spring break. And when we landed and were dragging our five kids and our luggage through customs, I saw a family trudging ahead of us in the same line.

There were three young boys, a mother and a father. The dad was wearing a baseball cap. The mom was petite with dark hair, and she was walking very, very closely to one of the boy’s who looked to be around Jack’s age. He hopping up and down and twitching his fingers.

Another autism mom.

I wanted to ask her a million questions.

How old is he? Does he talk? Does he have an aide in school?

Does she wish life was different?

Does she feel overwhelmed and lost and scared and anxious?

Instead I reached out my hand and brushed her shoulder with my fingers.

“Hey, Mama. Long day?”

“Yes,” she smiled. “Very long.”

I caught up with her a few days later. We were staying at the same resort, and one morning she walked over to where I was sitting and watching the kids on the water slide. Without ceremony, she sat in the chair next to mine.

Her name was Melissa, and her middle son was Landon. He has autism. He doesn’t have language, and he loves pot holders. Every day she drives him an hour each way to school.

“Yeah,” she said, her light blue eyes twinkling. “It really sucks sometimes. But I love him more than anything in the world.”

I know we’re lucky, because Jack is considered high-functioning. He talks. He is potty-trained. He can have conversations, as long as it’s about frosting or license plates or Nicki Minaj.

But for others, there is less to celebrate. For some families, autism is little more than an upwards travail.

No cakes. No baking. No words. Sometimes, no sleep.

Aware, impair, unfair.

It is a road no one would choose, and yet there are many, many footprints on the bumpy, messy, uneven path. And high or low or nestled somewhere in between, we all want the same things for the complicated people in our lives.

We want them to know happiness.

We want them to know love. And hope and forgiveness and joy.

We want them to stay safe.

Most of all, we want them to live the life they wish for themselves.

“He did say a word last year,” Melissa said as she got up from her chair. “It was his first word in seven years.”

“Really?” I leaned toward her. “What did he say?”

“ He said Mom. He said it on Christmas morning.” And then she walked away to find some sunscreen. Remembering her silhouette in the brilliant sunshine, I know what’s missing in Autism Awareness month.

You are.

Yes, you.

Without you, autism awareness is an exclamation without a point, or a balloon without enough air. It is lacking. Because without you, the breathtakingly unusual person in your life would simply drift—it is you who keeps him or her or them afloat and buoyant.

You make appointments for speech and OT and the neurologist.

You change soaked sheets in the middle of the night or wipe poop off the walls in the afternoon.

You cry yourself to sleep after researching preschools online.

I hear you.

I see you.

You are not alone.

You cut fruit for a salad for the nine-thousandth four hundred and fifty-second time, even though the person at your table refused to try even a little bite the first nine-thousand four hundred and fifty-first times.

Aware, unfair, ripe pear.

You are a child who feels unheard within your own family, because autism’s voice can be so loud. You watch Disney movies when you’d rather watch Transformers, you listen to hours of Minecraft, you eat pink camouflage cake on your twelfth birthday.

You are not invisible.

You stand in church next to a tall, gangly boy in a red jacket and let him wind his fingers through your long, wavy hair because you know this keeps him calm.

Aware, beware, long hair.

You are trying so hard to hold on to your marriage.

You are trying to make people understand.

You feel like you could literally go crazy and tear out your own hair at the injustice of it all. And if you have to listen to that dumb puppet Elmo singing one more nanosecond, you just might run right out the door.

You wish there was a crystal ball to tell you how this will all turn out.

You can’t decide if you should have another baby.

You wish he would sleep.

You wish she would talk.

You are tired and scared.

You are taking it day by day, night by night—sometimes minute by minute.

You are the front line and the middle march and the last hope.

Aware, threadbare.

Yet even on the bleakest days, your heart can soar with hope and love and pride. Maybe it’s a single new word or a bite of pizza; maybe it’s a full night of sleep or a trip to the grocery store without a meltdown. But it’s there; your very own autism awareness.

You are an autism mother and father, brother and sister. An autism grandma and grandpa and cousin and aunt and neighbor and friend. And If I could, I would send you a warm cinnamon roll with lots and lots of frosting.

But I can’t, so instead I will tell you a little secret: because of you, I reach into the cabinet for the cake mix and tell my son to take out the pans.

Aware, bakeware, to share.

This April, I’d like to do more than just increase awareness about tantrums and speech delays. I’d like to honor those people behind the people, the ones who work every day to keep their balloons aloft.

How about you do it with me? How about you put the name, and maybe a picture, of a special person who handles the daily care of an unusual person with grace and compassion in the comments below, or here on Facebook?

I’ll go first.

For Melissa. On Christmas day and always, you are an autism mom.

Melissa and her family.

Melissa and her family.

 

Raising a Tween Is Hard

Every year I write each of my children a letter on their birthday. These letters describe the person they are at that particular age; their likes and dislikes, favorite activities, and overall temperament. The following is an excerpt from the letter I wrote my oldest son when he turned twelve yesterday.

Dear Joey,

The day you turned five I looked at Daddy and said, “I can’t believe he’s five.”

He did that head-nodding thing he usually does when he agrees with you. You know the one he does where he kind of closes his eyes?  And then he said, “I know, but I’m dreading six. Six feels really big to me, like he’ll be such a big boy.”

And now, twelve.

Your face has not changed one bit. I’m serious. You look exactly the same as you did when you were a baby or a toddler or a little boy walking into kindergarten. You’re just taller. And now your feet are bigger than mine.

You are the only one of our kids who has carried your nickname past toddlerhood. Boochie, or sometimes Buca.

You order from the adult menu whenever we go to a restaurant. Your favorite is Chinese food.

Do you remember Piffy?  The dragon who lived in the palm of your hand? You told me about him when you were four years old. You were so serious. You stood in the kitchen and solemnly spread your fingers open.

“See, Mommy? He lives in here, in my hand.”

And whenever we were driving somewhere, like the grocery store or church or to school, Piffy rode behind us in his own sports car.

You played basketball and baseball this year, and you ran on the Special Olympics track team with Jack. He wouldn’t do it until you agreed to do it, too.

People ask me all the time if you are more empathetic because you have a brother with autism. But to me, empathy somehow implies that you feel bad for Jack, and I don’t think you do. I think you worry about him and you wonder about him and you love him. You eat the cakes he bakes and when he needs you to run fast and far around the track, you run with him.

You are very attached to your three brothers and one sister, and they to you, especially nine-year old Charlie. I think this has something to do with Jack’s autism, but I can’t quite put my finger on why or how.

As soon as Charlie could talk, it was, “Where Jo-Jo? Where he be?”

Now, all day long, he asks, “Where’s Joey?”

“When’s Joey getting home?”

Or, “What time will Joey be back?”

It’s as if you are his anchor. He has to sit near you at dinner and the movies and church. He will switch the plates around at the table to be closer to you. He has to taste your French Fries, your lemonade, your Halloween candy. Nothing is real for Charlie until he tells it to his “Jo-Jo”.

Sometimes I wonder what it’s like to have someone adore you like this. I imagine it’s exhausting. Yet you handle it with a grace I am certain I do not possess.

You love Transformers and Legos and Minecraft.

You only want to wear athletic pants, and you try to get away without wearing a coat even when it’s freezing out.

You are one of the funniest people I know.

For the most part, you are very, very easygoing. Sometimes I think of you as a little duckling swimming in a wide, cool pond. All of life’s demands roll off of your sleek feathers and bounce into the water. But I worry that maybe underneath the smooth surface, you are paddling and paddling like crazy, all the while trying not to make any waves.

And lately, there is a subtle shift between us. It feels as though the ground is moving oh-so-slightly beneath my feet, the way I imagine the earth’s plates do when they’re preparing for an earthquake.

We argue more. You can be sullen. You sigh a lot and it makes me crazy.

One cold night in late November, we were arguing about your messy homework. I know, I know—you  didn’t think it was messy, but I did. I wanted you to do it over.

We escalated until we were standing within a foot of each other, screaming. Finally I leaned close to your face, so our noses were almost touching, and said meanly, “Guess what. I am the mother and you are the child. You do as I say. Now go to your room before I lose my mind.”

You turned on your heel and stomped up the stairs. Fuming, I went back to cooking dinner.

About a half our later Daddy and I called everyone to the table to eat. We were having your brother Henry’s favorite, sausage kale pasta.  We called and called and you never came, even after all the kids had sat down at their places.

Daddy and I looked at each other. Where is he?

We scoured every inch of the house, calling your name. Under the beds, behind the shower curtain, in the big storage area in the play room. Your brothers and sister were frantic, crying and shouting for you over and over.

“Joey! Where are you?”

Your jacket was still on its hook and your shoes were still lying on the mat where you’d kicked them off earlier that afternoon.

I went outside. It was snowing lightly, and I looked everywhere for your footprints on the driveway or the lawn. I looked for a stranger’s footprints. Nothing.

Boochie, I can’t even being to describe how I felt the entire time we were looking. I felt like someone was squeezing my stomach in their fist. Not punching it, but squeezing it—tighter and tighter until I could barely breathe.

All of the awful stories I’d ever read were racing through my head; stories about kids abducted from their own home, kids who suffocated in the trunks of cars or hampers or curled up in ottomans, kids who walked down the driveway on their own and were never seen again.

Did he run away?

I ran back into the house and met Daddy in the upstairs hallway. He had the phone in his hand, ready to call—who? Who do you call when your child is missing and you think he ran away because you yelled at him but his jacket and shoes are still in the mudroom where he put them after school? The police, I guess.

Just then, we heard a door slide open.

All that time, you’d been hiding in the closet in your room. You came out, sobbing.

See, buddy, there is all this stuff online and in the library and the bookstore about how to swaddle a baby and change a diaper and handle a picky eater and send a clingy child off to preschool. But there is very little written or spoken about what to do when you and your tween son have an argument and he hides in his closet because he’s embarrassed and worried and sad.

Some days, I am lost too. Some days, I would like to hide in the closet.

Buca, my time left with you at home feels so short. Six years until you graduate from high school, and maybe head out into the world on your own, whether to college or to trade school or to travel.

How many more times will I feel your warm forehead with my lips to see if your temperature is high?

How many more times will I remind you to wear your coat? (Probably a million, I know.)

How many more chances to I have to tell you to say no if someone offers you marijuana or heroin?

Or to tell you that you should always, always call us for a ride home, no matter where you are?

How much longer do I have to teach you all the lessons I want to teach?

Last week I asked you what kind of cake you wanted this year. One from the bakery with a picture of a Transformer on it? Or an ice cream one from Dairy Queen?

You and Jack had just walked in from the bus together. Jack was standing at the cabinet with his hand in a bag of popcorn.

“This year, I want a special Duff cake,” you said, referring to the box of cake mixes the Ace of Cake baker sent us a few weeks ago.

You walked over to your brother, and slung your arm around his shoulder. “Okay? Will you make me one of your cakes?”

“Yes, I know. I know. The pink one. Camouflage.”

“Jack,” you said gamely, as if every 12-year old in the world dreams of nothing but a pink camouflage cake for their birthday, “That sounds great.”

And I felt that stomach-squeezing thing again, kind of like when I couldn’t find you. But you were right in front of me.

See Boochie, when you are a mother, the tender combination of love and fear and pain and regret feels exactly the same. It feels like someone is squeezing me with their strongest hands, until my breath is tight and small.

It feels like pride and worry and the slipping of time all mixed together.

It feels like breathless hope.

I hope you know that you will always be my baby.

I hope the pressure of being normal in a family with not-normal doesn’t make you swim in circles.

I hope you enjoy every bite of your pink and white camouflage cake.

I hope you never hide from me again, even if it’s no further than your own closet.

Mostly, I hope you will always have a tiny dragon who lives in the palm of your hand.

(Note: Before I posted this, I had Joey read it over to make sure he was okay with it. He reminded me that Piffy’s sports car was red.)

Not Your Average Joe

Not Your Average Joe

Joey and Charlie, always together.

Joey and Charlie, always together.

 

To the Audience at the Talent Show

A lot of times people ask me if my 10-year old son Jack’s autism is high or low functioning.

And I almost always answer the same way.

“Um, I’m not sure.”

I mean, for the most part, he is high functioning. He talks and carries on conversations and is in a regular classroom and eats a lot of different food and doesn’t mind wearing shirts that have tags sewn into the collar.

But his conversations are more than slightly irregular, he needs a 1:1 aide to get through his day, and he takes medication to sleep at night.

Low? High? Medium? In-between?

He’s also the kind of kid who loves the spotlight. He loves to perform, and he loves an audience.

That’s high functioning, right?

But what he really loves is to be in charge. He loves to have a microphone and point and direct and boss. And you never know what’s going to come out of his mouth.

Not so high functioning.

Take, for example, the vacation we took a few weeks ago. I don’t mean the way he fell while we were standing in line at the airport or how he wanted to pack his weighted blanket or his quest to identify people who use tobacco.

[At the top of his voice, three feet from a man smoking.]

“Stand BACK everyone. That man is smoking a CIGARETTE! He is using TOBACCO.”

I mean that he signed up for the talent show, the one the Caribbean resort held for all the kids who were staying there.

He’s done this kind of thing before. He was a frog in the school play and every summer, he enters the singing contest at camp. In fact, I’ve just barely recovered from the fourth grade talent show last spring, when he screeched Taylor Swift’s Eyes Wide Shut into a microphone in front of the entire school.

But this was not the stage in our elementary school cafeteria. This is not our tiny New Hampshire town where people ride their horses down the street and everyone, even the cashier at Walgreensespecially the cashier at Walgreens—knows Jack and all of his quirks.

No, this was a big stage at a large resort, with an audience full of strangers.

“Really, Jack? Here? You want to do the talent show while we’re here? What will you do?”

“I will bake. Did you bring. The pans?”

I looked at my 10-year old son, tall and sunburned in his turquoise bathing suit.

“Uh, no.  No, Jack, I didn’t pack the cake pans for vacation.”

“Jokes. I will tell some jokes.”

“Uh huh, well, do you know any jokes?”

“Yes, I will tell twenty. Twenty jokes.”

“Well, we’ll see. How about five? Can we start with five? Tell them to me now so you can practice.”

“NO. I do not practice things.”

He stalked away, fuming. “To not even. Pack the BAKING SODA.”

It felt as though I was putting an exotic baby bird onstage without so much as a thin, delicate shell to protect him. I am used to his crooked wings and his bird-like hops. But would the rest of the crowd be able to see his beautiful jewel tones, and understand just how hard he works to fly?

For the first time, I could not pave his way. I could not prepare the audience for him.

They won’t know that about fifty percent of the things he says are scripted from movies and television, and how every time we pass a newborn in a stroller, he mumbles, “My goodness, how that baby has grown.”

They won’t know how much he looks forward to something called Snack Shop in school on Thursdays—when the class gets to buy ice cream after lunch—and the way he carefully folds his coveted dollar bill into the front pocket of his backpack on Tuesday night.

“Two days. Two days until ice cream for Snack Shop.”

No one in the audience will know how confused he was when the privilege was taken away because some kids were caught throwing food.

“But Snack Shop. It is for me gone. But I did not throw that food.”

They won’t know how much he loves Oreos, or that he wants to be a baker when he grows up, or how loud he can scream when he’s having a tantrum.

I guess what I’m saying is they won’t know he has autism.

And if they don’t know he has autism, they’ll just think he’s weird. The kids in the audience might nudge each other and smirk, while the grown-ups will squirm uncomfortably in their chairs and check their watches and silently wish he would get off the stage.

I know what you’re probably thinking right now. Who cares, right? Let him go on the stage and tell his jokes!  Who cares if he looks different? Different is great!

Yeah, I used to think that way too—until different meant my own son.

I mean, obviously I love different. In our house, we celebrate different. But sometimes, different means more than just unusual or uncommon or not like the others.

In instances like this, different means vulnerable. It means fragile and tender and precious.

In instances like this, I celebrate him, but I also have trouble quieting a deep ache inside my soul.

Is it my job to be the shell; to fold around him and keep him safe from jeering or humiliation? Or should I push my baby bird out and into the world, and cross my fingers and pray he can fly?

That night of the show, Joe and I sat together amongst the two hundred or so other people in the crowd. After about eight other acts, Jack strolled on to the huge stage. Although he stood tall, to me he looked so small.

He started with his traditional, “Okay, okay, okay.” He seemed nervous.

He introduced himself, and explained he was there to tell some jokes. He mentioned he memorized them in his head, and would NOT be reading them out of a book like one of the other contestants did before him. Nor would he be reading a poem.

He shushed the audience when they got too loud for him.

And then, well, he did something unrehearsed. He pulled a Phil Donahue, and starting waltzing into the audience to see if they knew the answers to his riddles.

I was standing in the aisle, taking video with my phone, and I did not know what to do. I looked over to Joe, who was halfway out of his seat. The poor DJ looked confused, and started to follow him around the stage.

But Jack? Well, Jack was in his element, calling on people and bringing them the microphone and hopping back on the stage to reveal the answers.

Watching him, I at last understood that it doesn’t really matter how you or I or an audience in the Caribbean see him. It only matters how he sees himself.

On this night, Jack saw himself as funny and interesting and brave.

Just like I do every single day.

And the audience, well they clapped and cheered and rooted for him.

Just like I do every single day.

Neither he nor they cared that he had autism.

But I do. Every single day.

If I could go back and tell the audience one thing that night, I would say this:

Thank you. Every time you clapped and cheered, I remembered that my son is more than high or low or medium on a spectrum scale. He is more than autism.

He is precious and vulnerable and tender and strong. He is spirited and courageous, and also quite the joke-teller.

He is Jack, and he is flying.

(Check out my Facebook page to see the video of the entire performance.)

IMG_7331

 

 

Who Am I?

Let’s play a game, shall we? I’ll give you a bunch of clues, and you try to guess who I am.

I am not a person, place, or thing. You can’t see me or touch me or smell me.

I am considered a human condition, but really I am a collection of symptoms.

He doesn’t play with other kids.

The seams in his socks make him crazy.

She doesn’t like it if we drive home a different way.

He’ll sit and take the vacuum apart for hours.

He won’t look at me.

She doesn’t look at me.

When will she look at me?

I am the twitching finger and the flapping hand.

I am the silent toddler with downcast eyes and a tippy-toe walk.

I am a diagnosis, a disorder; a box you check on the medical form or a postscript at the end of an e-mail.

P.S. I’m not sure if you’ve heard, but Jack’s been diagnosed.

Like magic, I can make your child disappear before your very eyes.

I will make you have bad days and good days and bad days then good.

I live in each and every one of you, whether you know it or not.

I am the cocktail party that makes you shy and the tag on your shirt that makes you itch. I am the sticky crunch of strawberry seeds and the overwhelming hum of the air conditioner or the fax machine or the fly outside your window.

I make some people jump and flap, and I make others chew gum or run for miles or twirl their hair.

I am the Baby Einstein DVD on repeat.

I am long, neat rows of Thomas the Tank engines snaking around your family room. Seeing these rows will make you so frantic, so frustrated and nervous and empty, that it will take all of  your willpower not to kick all of those stupid engines under the couch when you walk by them.

I am hours of Minecraft.

Some days, I taste like shame and bitterness, burning up from a mother’s heart like sour indigestion. Some days, I taste like defeat.

But other days, I taste like the purest joy; like cotton candy and happiness and pride exploding within your heart.

He did it. He said Mama!

I do not care if you were fed by breast or by bottle, if you were born in a sterile hospital room or at home in your mother’s cozy bed. No one is safe from me.

Because of me, and the panic and chaos I have created, children could start dying of the measles.

But you won’t actually die from me.

You can find me in churches and synagogues and mosques. I am in schools and movie theaters, playground and libraries.

I am in marriages and friendships, colleges and coffee shops.

For some reason, people celebrate me in April. They use the color blue. But I am actually all the colors of the world; red for Saturday and yellow for the too-bright sun.

But I am also color blind.

I am in India. I am in Jamaica. I am in the Philippines and Wisconsin and Sierra Leone. You can find me north and south of the Equator, in Russia and Japan, San Francisco and Belgium.

Maybe you sit across from me at your dinner table every night, or maybe you look up to see my reflection in the mirror when you brush your teeth before bed.

I live within a 10-year old boy in New Hampshire. His name is Jack.

One year, I made him afraid of wind. So afraid, in fact, that he would not go outside all winter.

The next year, it was dogs. Because of me, he wouldn’t cross the street if someone was walking their Pug or their Golden Retriever.

And this boy Jack, well, I make him work hard for the things that come naturally for others; language and jokes and facial expressions. He spends a lot of his day anxious and confused. I am his enigma wrapped up in Waffle Thursday and Pancake Saturday.

Mom it is Thursday Thursday for waffles for waffles waffles waffles.

I have been around since the beginning of time, despite the façade of normal assembled by generations before you.

There is no normal. I am here to tell you this. So please, stop looking for it all the time.

That’s not normal. He’s not normal. Why can’t she be normal?

But it is up to you how you see me; as a nuisance, a tantrum, a disorder, or a curious lamb wearing the costume of a wolf. Can you look past my long, yellow teeth and matted hair, and find the soft, gentle child underneath?

Because of me, Mozart wrote long, complicated symphonies. His hearing was rumored to be so sensitive, he could hear the difference in the slightest tone; his concentration so fierce, he would skip meals for days to finish a piece.

Historians explain the way Michelangelo made sketch after sketch until the final pose was perfect in his rigid, unbending mind. Because of me, the Sistine Chapel explodes with light and color.

Records show that Albert Einstein did terribly in school. He didn’t learn the same way as all the other kids.

And Sir Isaac Newton of the fallen apple had no friends. He didn’t understand people, and he insisted on a strict, unwavering routine.

And there is Temple Grandin; a woman so intelligent, so compassionate, that she revolutionized the cattle industry through sheer perseverance and determination.

You see, a still mind can still have great thoughts, and within even the quietest person, there is a voice. Or a painting, or a song.

I am so many things. I am hope and possibility. I am music and dreams, kindness and color. I am gravity.

I am beautiful.

So please, before you panic or judge—before you race for a cure or rush to call me weird—try to remember my value. Remember my goodness.

I will teach you the real meaning of unconditional love; a love so powerful and strong it will rearrange your heart. I will teach you strength.

At first, you probably won’t even realize that you are learning from me. I am so subtle, I am practically invisible.

But every hour, every day, every year, you and I will make our peace. You will step carefully over the long rows of trains, and admire the complicated cities in Minecraft. Every Thursday at dawn you will turn on all the lights in the kitchen, reach into the highest cabinet, and bring down the waffle iron for a boy who at last said Mama.

You will forget normal.

I am autism. And I will make you better. I will make your family better.

If you let me, I will make the world better.

Our lamb, Jack.

Our lamb, Jack.

Autism and Vacation

Last week my husband Joe and I took five red suitcases, four messy boys, and one pink girl on a Caribbean vacation.

As soon as our second son, Jack, climbed into the shuttle to the airport, he made an announcement to the driver.

“None of us. Smoke tobacco.”

The driver looked back at me in the dim light of the van. It was 3:30 am, and I imagine this was not the sort of conversation he expected to have with a 10-year old.

I smiled weakly.

“Uh, he’s right. None of us—we don’t use tobacco.”

Taking Jack and his autism on vacation is like bringing a fragile, anxious little fish out of a tiny backyard pond and throwing him into the ocean. You just keep your fingers crossed that he can handle a different schedule and change in scenery without getting swept away in a riptide of tantrums, meltdowns, and anxiety.

Right this minute, Jack is obsessed with Oreos, something called a Bamboozle challenge, all of Disney’s evil characters, and, because of fifth-grade health class, the dangers of tobacco.

Oh, and lately he licks things, like public signs and handrails and my jacket sleeve and once in a while, the walls. I have no idea why.

So, as you can imagine, between the licking and the tantrums and the tobacco, a trip with Jack can be all sorts of crazy fun.

But he actually loves to travel. He loves to see new places and figure out the best way to get there. He loves to try and guess just how blue the water is in the Caribbean.

“Blue. How blue is the ocean. Tell me now how blue.”

That is, he loves to travel as long as we let him pack his fourteen Chapsticks and his beloved stuffed bunny and his pillow with the license plates printed on it and countless other useless items. For this trip, we had to talk him out of packing his humidifier.

Basically, he needs to bring his inside world whenever he ventures outside. This is what makes him comfortable.

We got to the airport around 4:30 in the morning. Joe and I exchanged uneasy glances when we saw how crowded it was, and the long line to check in for the flight.

As we moved our luggage and made our way onto the line, Jack fell. He began to scream the loudest, rawest, most guttural scream, and a hush fell over the entire terminal. Hundreds of people watched as Joe and I tried to soothe our flapping, flailing son.

“Jack, ssshhh, it’s okay, calm down.”

“Hurt hurt hurt HURT!”

Joe looked stricken, and I felt my own face burn.

I glanced over towards the crowd of people waiting on line and staring, and in that muted space and time, I realized the hardest part of traveling with Jack.

It’s not the tantrums or his mouth on my jacket or the obsessive questions about the flight schedule. Rather, it’s explaining him. There is so much I want people to understand about him, about us, about the spectrum disorder.

So, if you are ever in an airport or on a shuttle or a bus or a train, and you see five red suitcases, four messy boys, and one pink girl, this is what I’d like you to know.

Our son Jack has autism. He has trouble regulating himself, especially if he’s hurt or scared or confused. This means he screams sometimes, which can be a little jarring because he’s a giant 10-year old boy with the voice of a toddler.

But from the moment we step out of our front door, I am devoting every ounce of my energy into keeping him safe and comfortable.

I am trying to make sure he doesn’t wander away from me or step on your toes or kick your seat or cut you in line.

At some point, you may overhear my husband and I argue, because traveling with autism is very stressful business.

“Carrie, he needs to wear his fleece, it’s freezing in here.”

“Oh, really? We’re going to worry about that right now? You know he’s going to freak out.”

When I am not hissing at Jack to keep his tongue off the counter or assuring him our flight is on time and that we will try very hard to get him a window seat, I am looking at all the people around me.

I am doing my best to anticipate his questions and comments and loud, booming observations about your wig or your skin or your hat or your baby.

I am trying to help him flex and bend and learn and grow; to see that many people are small while others are tall, there is dark and light and wide and narrow. Some even smoke tobacco, and that is okay.

At the same time, I am hoping those around me may flex and bend and learn and grow; to see that some boys hop and lick and shout and fall. Some boys have autism.

And that is okay, too.

Every day, I fight for his place in this world.

And every day, I fight for your place in his world.

You can ask me anything. Please, ask me anything. Ask about spectrum disorder and stimming and medication and early intervention. I will tell you everything I know.

You can ask Jack anything. He may not answer you, but if you really want to get a conversation going, casually mention that you think Golden Oreos are the best kind.

See, in our house, autism is not a secret. It is not a buzzword or a vague, underground rumor. It is true and vibrant and powerful. It is living within my son.

Trying to describe Jack’s autism to someone who doesn’t know him is like trying to describe the bluest ocean to a person who doesn’t see.

It is deep and sparkling and brilliant and alive.

It is slippery and quiet, but it can also be deafening. It likes to make waves.

It’s not something you can hold in the palm of your hand, and yet all at once it surrounds you. It can take your breath away.

We are a family traveling with autism, and we are messy and loud and real. We are imperfect, yet unbroken.

But please, don’t feel bad for us. Promise me you won’t shake your head or sigh or murmur about how it isn’t fair.

You see, for the longest time, fair was lost to us. In fact, we stopped looking for it altogether.

But then we found it again.

We found fairness and justice and truth in our boy. He is unexpected and earnest. He is delightful and strong.

In so many ways, he is just like you and me; he wants nothing more than a seat by the window and as many Oreos as he can eat.

He longs to be understood.

He wants people to stop smoking because it is bad for them, and for everyone around him to know he hurt his knee when he fell on the floor.

“I hurted my knee so bad. That’s how I screamed.”

And after an early morning ride on a shuttle and a fall in the airport and a very long trip on a plane, he wants to take a deep breath, close his eyes, and jump as high as he can into the dazzling blue waters of the Caribbean ocean.

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