My name is Carrie.
I am forty-three years old. I am in decent shape. I exercise almost every day, and I don’t take medication, and I don’t have any medical issues. For the most part—aside from the occasional cold in the winter and monthly bouts of PMS—I am healthy.
And yet, I often think about what will happen when I die. I think about the day when my heart stops beating and my lungs stop breathing and my brain quiets for the last time.
I am not sick. No, it’s not that.
I am not morbid, or depressed, or a hypochondriac.
His name is Jack. He is fourteen.
When Jack types a text or an e-mail or something for school, he uses all capital letters, like this: Mom. Do Not Forget. Frosting At The Grocery Store. It cracks me up whenever I see it.
What will happen to him when I die?
Many of us contemplate our own mortality. It’s only natural. We worry we won’t make it long enough to see grandchildren graduate, or daughters wed, or sons cradle newborns of their own.
Me, well, I worry my special-needs son will have nowhere to live.
I mean, obviously, he’ll always have somewhere to live. My husband and I have already been working on a plan for that sort of thing. There are different communities for people like him, with varying levels of support and staff and independent activities.
Jack Has Autism. He May Not Ever Live On His Own No Matter How Hard We Try.
We Are Trying.
I screamed at him the other day. It was the kind of scream you hope and pray the neighbors don’t hear, even though it’s a fine spring afternoon and all the windows are open.
I screamed at him because he’d been asking me over and over again what our schedule was for Tuesday. It was only Sunday, see, and so I couldn’t really think clearly about Tuesday.
But it was more than that. It was more than the schedule. It was that he’d asked me to take him to Target on Tuesday to buy the new Black Panther movie since that’s when it was coming out on DVD.
I had plans for Tuesday afternoon—a baseball game for one kiddo and an errand to the tailor for a dress I bought that was too long and dinner to make and whatever else. I was busy. I didn’t care about Black Panther.
He did, though. He cared very much. He cared even though he will never actually watch the movie and he can’t quite understand the plot or the different characters or the fight scenes.
So I screamed at him. I screamed at him he needed to knock it off, he was driving me crazy and when was he ever going to stop obsessing about all these ridiculous things.
His face crumpled. He cried and then I cried and we decided to order the movie from Amazon as a compromise. And then he went out to the front porch to watch for the UPS man, even though we had just ordered it five seconds ago.
At what point will it be okay for me to die?
At what point can I look at my son and think he will be just fine without me—sad, sure, maybe a little reminiscent and even grief-stricken—but safe, and independent, and financially secure?
The thing is, I have never been a person who is afraid to of death. I have always aimed to die as I lived. I long for nothing more than to leave behind a legacy of great big belly laughs and funny stories and a ring for my daughter. My husband Joe gave it to me when she was born. It’s a ruby, for her birthstone.
But my legacy has changed. I will leave more behind than laughter and jewelry and memories. I will leave behind a boy, or perhaps a man, who cannot take care of himself.
If I live until I am 85, he will be fifty-four.
When I’m ninety, he will be sixty-one.
The day I turn fifty, he will be twenty-one.
These are the calculations I do in my head from time to time, and I am not even that good at math.
What is the right age? What is the right time for me to close my eyes and take my last breath?
What will happen when I am gone?
Who will decipher his unusual messages, and listen for his unique words?
Who will remember that if he takes a shower in the middle of the afternoon, it means he has a headache?
Who will talk to the doctors about all the side effects from the medicine he swallows at night?
The worries assault me like the voices of an orchestra—some high, some low, some soft, gentle whispers.
What will happen to him when I die?
And if worry is the orchestra, then my heartbeat is the solo dancer in the dark of the night. It jumps, and leaps, and twirls.
I am his mother. No one knows him the way I do. No one knows that he needs lunch money for the hot truck at school every Friday and how he starts to get headaches when the prescription for his glasses is outdated and the way he likes to sleep with six pillows at night.
I know, I know. A lot could happen in the coming years. He will grow. He will change. He will make progress.
But see, he is stuck right now. He is so stuck, you wouldn’t even believe it. He is taller than me and he can’t follow the plot for movies and my heart aches and I have a lump in my throat that sometimes won’t go away. I am in charge of his future, and I won’t live forever, and the weight of this is so heavy at times that it’s hard to breathe.
Never. I think never. I think it will probably never be okay to die. I have a deep, dark feeling we may never get to that point.
But I will die. Everyone must. It is fact.
So I am counting on you. Yes, you. You right there, reading this post.
You, sitting in your car, sipping coffee and scrolling through new your newsfeed on the phone.
You, in the plaid shirt, eating lunch at your desk.
You, in the dress with all the little flowers.
You, and you, and you.
You are my legacy.
I need you.
I need you to remember how once upon a time, you read a story about a boy named Jack.
And if you ever run into him, and I am no longer here, I need you to do me a small favor.
Remind him how much I loved him.
Explain how I never once—not even for five seconds—gave up on him.
Tell him how sorry I was for yelling one afternoon in May.
Jack-a-boo. I Am Sorry.
I have a son named Jack, and a daughter named Rose.
Although Jack and Rose are three years apart, they have a close relationship.
They sit at the kitchen counter in the morning and munch on their cereal. She asks about his school, and he tells her bits and pieces. Every few minutes she places her fingers on his hand to remind him to use his spoon instead of fishing around in his bowl of milk for the Cheerios.
None of this is particularly unusual. Plenty of families have kids who eat breakfast together, and talk about school.
Yet at the same time, it is unusual, because Jack has autism. He is older than her in birth order but younger than her emotionally. He doesn’t like to answer questions. He doesn’t like to make conversation. He especially does not like to use his spoon. But for his sister, he will.
She gets him. I don’t know how else to explain it. She has mastered the art of waiting for him–of listening through the long pauses to hear what he has to say. She doesn’t seem to mind the waiting.
And in the eye of the hurricane—when the sour cream isn’t right or the lights are too bright or the line for Redbox is too long, it is often she who calms him.
She asked to write about him this week. I asked her some questions and she typed her answers, and when she finished, she stood over my shoulder and we edited it together.
In her words, I understood her tender, tenuous balance—on one hand, an uncertain fifth grader who is trying to figure out who she is and where she belongs. On the other hand, a sister who holds a magic sister-key to her brother’s complicated mind. And all the while, she believes the world is good.
It reminded me of something I once read.
“Validate my existence with your words, and I will speak to you all the day long.”
― Richelle E. Goodrich
My name is Rose. I am ten years old. I have four brothers. I am surrounded by all boys because even my dog, Wolfie, is a boy.
I am in fifth grade. I go to a nice school and I have wonderful teachers. But I don’t always fit right in like I should. Other girls make me feel nervous. People can be mean and I try not to care what they say.
I like the color blue and dark green. I’m not the best with dresses. If I had to pick it would be pants and a t-shirt. I also have short hair and I am pretty tall for my age. I want to be a primatologist when I grow up. A primatologist is someone who studies apes like Jane Goodall.
One of my favorite things to do is something our family calls Adventure Sunday. We make a plan in the morning of what to do, like a movie or to visit somewhere together. I think the best one was when we went tubing down this big river. I flipped out of my tube and we laughed so hard.
That was a good time except my older brother Jack kept trying to jump off this rope swing but he kept getting scared to do it. There was a line behind him and at first people didn’t mind, but the longer he took they got mad, and they shouted some things at him that didn’t sound nice. I felt sad and mad at the same time.
Jack has autism. He was born with it, and he’s the only one in our family who has it. I think that makes him feel lonely.
He likes cars, music, and how funny Mickey Mouse can be.
I baked him a whole cake when he had to go to summer school. He cried on my shoulder before the bus came in the morning, and I thought about him all day I decided a cake would make him feel better. It was vanilla with blue frosting and he ate a big piece of it when he got home.
I worry that people might think he’s dumb, but he isn’t.
I worry he’ll feel alone for a lot of his life because he doesn’t really have any friends. People don’t know him like I do. I try to listen to him, and help him if he has a problem.
Like one time in a restaurant, his food didn’t come out right and he got very, very mad. I gave him some of my food while he waited. It was easy to make him happy and calm. We’d ordered the same thing anyway, chicken fingers with French fries.
I don’t want to say I study him, but in a way I watch him closely to see his moods and the way they change. I watch him carefully to see the things he likes. I try to put on a kind smile every time he’s in the room, even if I’m sad. This way he’ll stay happy too.
I don’t like when people say he has special-needs. I know he has needs, but we all have needs.
People say I have a nice way with Jack, but I think if you knew him you would do the same. When things get tough you have to stick with him.
I really enjoyed meeting you this week. We had quite a bit of time together to talk when you drove me to the airport, since there was a lot traffic. I didn’t realize there was so much construction in Austin.
I liked hearing the stories of your childhood in Sudan, and how great herds of elephants crossed the land, and the way you and your brothers and your sisters had to dart across their path.
I especially liked the part where you told me about a big swimming hole in your village, and how you and your two brothers stood one day and watched while a baby elephant tried to swim out of the water, but kept sliding back in the slippery mud.
And the mother elephant, well, she just waited on the side, and watched her baby slide and swim and slide and swim. After about an hour, she reached in, and gently brought him to shore.
As we waited, bumper-to-bumper with cars ahead of us and cars behind us, I told you a little bit about me.
I told you my son Jack has autism.
I told you how, where I live, it is autumn now, and the way the leaves on the trees are changing colors. In the late afternoon, the sun glows red and orange and yellow, and it’s glorious.
We laughed about politics and talked about the Texas weather and when there was a lull in the conversation, you looked at me in the rearview mirror and asked me a question.
Your boy. He will always have this autism?
Oh, yes. He will always have it.
Some people might get mad at a question like that, but I want you to know I didn’t. It was so innocent and pure and hopeful, it made me smile. In fact, I wanted to reach into your reservoir of hope, and take some for myself.
Sometimes I wish I could be innocent when it comes to autism, but I’m not.
I know all about the statistics and the gluten-free and the therapies.
I know how life can change in an instant, from a river of calm one moment, to a riptide of chaos the next.
I know many couples raising a child with autism get divorced, and I know many brothers and sisters of a child with autism become angry, and jealous, and defensive.
I’m not divorced yet. Oh sure, there have been days when it feels like my husband Joe and I are hanging on by a thread, but so far, we’ve always managed to find one another again.
My other kids aren’t too jealous. Oh, sure, 14-year old Joey sometimes wonders why he has do so much homework and has to go for extra help in math when Jack goes out to the movies and for lunch at his school.
I try to explain that Jack’s school is a combination of academics and life skills, and when Jack goes to the movies and for lunch, they are trying to teach him how to make change from a dollar and order from a menu.
Life skills. Man, I hate that phrase. I can’t exactly put my finger on why, because we all need life skills, and it’s good for kids to learn how to sew buttons on a shirt and ask the server in a restaurant for a refill of their water, but for some reason when I say the words out loud—my son goes to school to learn life skills—it makes him sound like a big dummy.
He’s no dummy, I promise you that. A child who can figure out every password on the computer and order $200 worth of DVD’s from Amazon is most definitely not dumb. He’s, well, he’s complicated.
You just have to pray. He will find his words.
If we’d had more time together, I would have told you I do pray. Boy, do I pray.
I don’t pray that he stops having autism—I mean, for a while I guess I did, when he was maybe three years old and I thought he would outgrow it. But now I know better.
Now, I just pray he’ll make some friends soon, or his body will adjust to the new combination of medication we’re trying. You know, things like that.
I wish we had more time together, so I could explain to you why Jack will always have autism. It isn’t something that heals itself with a little help, like a broken bone in a cast, or a cold that gets better with antibiotics.
My son doesn’t have the kind of autism you see on TV, like in that new show called The Good Doctor where a young man stands around with a quiet smile on his face and his eyes are all dreamy and he performs surgery on a liver by the side of the road.
Our autism is angry, and lonely, and it wears a frown. For now, anyway.
With our autism, I have to fill out a bajillion forms all the time. This week I had to go online and order Jack’s school picture. They wanted me to select which grade he’s in, which is very hard because technically he’s in 8th grade, but he’s in a special school. Also, he’s very, very young for his age.
I don’t think medical school is in our future, if you know what I’m saying. I mean, I guess anything is possible.
This is our autism. It is uncertain—unpredictable. It is knowing something in your heart but being too scared to say it out loud.
See, I have to tack on the phrase I guess anything is possible to almost everything I say about my son, or people will think I’m trying to sell him short, or minimize his potential, or ruin his dreams.
I’m not sure he’ll ever drive a car, but anything is possible!
I don’t think he’ll ever have a child, but anything is possible!
He may not graduate from high school, but anything is possible!
I always finish off the sentence with a stupid sing-song voice, like I’m trying to sprinkle glitter on top of rancid meat.
Listen, I know he’s a bright, interesting kid with a future no one can predict right now. But at the very same time, I know the reality of the child who lives with me, and I know that holding on to dreams too tightly is not always a good idea.
I looked over my shoulder, and you drove away. You gave me a small wave. I waved back at you.
I wanted to say thank you for asking. Thank you for listening. Mostly, thank you for telling me about the elephants.
The mama and her baby remind me of autism for some reason. Something about the swimming and the sliding.
Lately my son Jack is very, very angry.
He is not himself, although to be honest, I don’t even know what he looks like as himself, since we constantly ebb and flow through good days and bad—smooth, sunny sailing juxtaposed against rocky waters with a lot of wind.
Who is he? Who is this boy?
Who is this boy who rants and rails at everyone in our house?
Who is this man-child who stands taller than me and yet screeches like a baby if his fork drops on the floor?
We had to adjust the medicine he takes for anxiety. Maybe that’s the problem.
He’s thirteen and going through puberty, so that could be it too.
He also has autism, which means all bets are off when it comes to figuring anything out.
See, I am always trying to understand what is behavior, and what is the spectrum disorder, and what is simply a boy with the emotional maturity of an 8-year old trapped in a teenager’s hormone-riddled body.
He is confused. He is scared. So am I.
I’m sure I told you all about the stimming, and the way he grunts and jumps around the room. He’s loud. His footsteps make great big stomping noises, especially if he’s wearing his sneakers.
There’s new stuff now. Throughout the afternoon and into the evening, he paces the perimeter of the room and traces the walls with his fingertips. He goes around and around until my head spins.
He’s fascinated with the faucet in the kitchen. And by fascinated, I mean turns it on and off about a million times a day, testing the hose and spraying it all over the counters and sometimes the floors. And when he isn’t running the water, he’s filling the sink with ice.
He uses a glass to get the ice from the ice machine in the refrigerator. And I promise you, if I never hear the clink-clink-clink of ice on glass for the rest of the my life, well, it will be too soon.
I told you all about how autism strains my marriage. It is a weight we carry differently—my husband Joe straps it to his back and climbs up long, steep hills like a solitary man on a mission. He brings Jack to church and shows him how to cook bacon in the microwave and explains why you should always change the oil in your car.
I carry it beneath my beating heart, in a sacred space few people ever see.
The problem is, a man on a hill and a woman’s beating heart rarely agree in the heat of the moment, like when Jack is hiding underneath the hibachi table screaming swear words at our local Japanese restaurant on his brother’s birthday.
In those moments, when practicality meets emotion—well, it feels as though we are spiraling towards a hot, explosive fire. We are failing.
Who is this boy?
He is so incredibly, horrifically rude you wouldn’t believe it. He tells me he hates me at least once a day. He shouts in my face to leave him alone, he doesn’t need me, I am the worse mother ever.
When he does this, I try to remind myself it’s not personal. You know, because of the medication and the autism and the hormones and all of that.
It’s not personal.
It’s not personal.
Or is it?
You know what it’s like? It’s like living with an obnoxious roommate who wolfs down all the food during dinner and then tells you that your meatloaf tastes like dirt.
This is an actual quote.
Over and over we tell him he isn’t being nice, that he is very rude. We take things away and we send him to his room until he can use his good words.
He doesn’t care about being nice. He isn’t concerned with being polite. Like a toddler screaming and crying on the floor, he only wants to be heard.
I hear him. Oh, do I hear him.
Since my Jack-a-boo was a baby, he never liked me to touch him. As he got older, he would offer me one arm if I asked for a hug, and every once in a while, out of the blue, he would rest his head on my shoulder. Now he won’t let me come close to him at all.
Where is my boy? Where is the tender 9-year old who stood at the counter every Thursday morning mixing batter for waffles?
Where is the chubby preschooler who wore blue shorts and a striped t-shirt?
Where is the quiet smile, the one-arm hug, the earnest face?
I miss him. I want to hold him in my arms. I want to love him and soothe him and know him, but he’s too far away from me.
I think I told you about the scripting, didn’t I? The way he memorizes long verses from songs and videos? Then he repeats them in his robotic voice, which would be kind of amusing if it weren’t so mean.
We have the worst. Family ever.
For the life of me, I cannot break through the canned phrases to get a glimpse of the child underneath.
Who is this boy? At times, he is a complete stranger to me.
I know that sounds ridiculous. I mean, I know the second his eyes open in the morning and I know when he doesn’t have socks left in his drawer because he starts the washing machine. I know his cuticles are red and raw because he bites them all the time and I know he loves the stuffed crust pepperoni pizza from Pizza Hut.
I know he is in there.
Or is he?
The thing is, I am scared that beyond this wall of stolen words and scripted phrases there is simply silence—a great, wide emptiness devoid of originality, or creativity, or humor.
I so badly long to know him, and yet whenever he wanders through the room to talk to me, my stomach clenches and right away I feel annoyed, because I know he’s just going ask for the bobillonth time what time his bus comes in the morning, or if he can pre-order the new Pirates of the Caribbean movie.
I am not proud of this—the stomach clenching. I know that I sound like a small, selfish shrew, with the ice-clinking and the sneaker-stomping. Don’t worry. You don’t have to hate me. I hate myself enough already.
I want you to know that all day long, I am dancing a delicate dance with an invisible partner. Constantly I have to decide when to wait, and when to beckon—when to lead, and when to follow.
I have no idea what I am doing.
Raising a child with autism, I say the phrase for now a lot. It is a song sung in the dark—a quiet prayer in the midst of the battle.
For now he is far.
For now he is angry.
For now he won’t let me near him.
One day, he’ll come back.
Anyway, I know I’ve already told you of all this. But I wanted to tell you again, because it makes me feel better.
I saw you the other night, and I know you saw us. You know, when you looked at my son Jack jumping and hopping all over the restaurant. You looked at him quickly and then you dropped your eyes really fast to your menu.
Listen, I get it. I really do. He had chocolate frosting all down the front of his shirt because he’d baked a cake that afternoon, and he was muttering to himself like a madman. He was, as we say in our family, on edge.
Trust me, you aren’t the first person to do the look-quickly-avert-your-eyes-when-you-saw-him-thing. It has happened at least one million forty-two thousand times since my son was born.
He’s thirteen now.
But for some reason, today it made me sad. Maybe it was since we’d had a long afternoon. See, he found my car keys and tried to start the car because he was worried he didn’t have enough chocolate frosting for his cake and I barely caught him as he was walking out the door with the keys clutched in his fist.
Maybe that’s why my heart sank. Maybe not.
The thing is, my son is invisible. People see him and then they look down and they shuffle their feet and clear their throat because he makes them uncomfortable. A tiny part of them—the part no one would ever admit in the light of day—wishes he would go away so they didn’t have to look at him.
He is a boy best forgotten.
Again, I get it. He is loud. He is intrusive. He flaps and he makes these clicking noises with his tongue that make me crazy, and I’m his mother and I’m supposed to love everything about him.
Autism has never been a secret in our house—as a family, we talk about it almost every day. We tell Jack that his autism is as much a part of him as his blue eyes, and the freckles on his leg. We remind him when the spectrum disorder is making his brain think about Disney movies too much, when he should be thinking about riding his bike.
I mean, how can I deny it? How can I deny something that is so precious—so tender and complicated and maddening and endearing about so son?
We see it, we live it, we breathe it.
You know, if I could, I would invite you and your kids and your parents and your aunts and uncles and cousins all over for dinner one night.
I would invite the mailman and the librarian and the customs officer at the airport.
Cab drivers, and teachers, and bloggers, and nuclear engineers.
Muslims, and Christians, and people from Pakistan and Australia and Zimbabwe.
I would invite the whole world.
I would get a really long table and all the chairs I could find, and I would set out plates and napkins. Together, we would all sit, and at this table you would see him and hear him and know him.
You would see how hard he concentrates to fill the milk glasses, and the way he bites his bottom lip so he doesn’t spill.
You would hear him laugh really softly to himself when his older brother imitates Shaggy from Scooby-Doo, because Jack loves Scooby-Doo.
You would know he is loved.
Best of all, you would realize he has autism and it’s really not a big deal and you don’t have to be nervous or uncomfortable or anything.
Talking and laughing and sitting together, we would set a table that is wide with compassion, and long in forgiveness, and full of hope.
I like to think of it as Jack’s table, but it’s really autism’s table—or a table for anyone who is quirky, or scared, or unusual, or invisible.
The problem is, I can’t do that. I can’t have the whole entire world over because it isn’t practical. Not everyone would fit in our house and I have no idea how to cook for that many people. Plus my dishwasher is not that big and cleaning up would take me forever.
There are, however, other ways to set autism’s table.
Read an article. Follow a blog. Check a book out of the library.
Watch the HBO movie about the life Temple Grandin. It’s really good and it has Claire Danes in it.
Ask about the difference between Asperger’s Syndrome and Autism Spectrum Disorder.
Ask about the cost of services, and if there are adult programs.
Ask about vaccines.
Hire someone who thinks differently than you do.
If you see a short bus pass by, smile, and wave.
If you go to a high school graduation, clap loudly for every single student when they accept their diploma, because you never know how hard some of them worked for their place on the stage.
If you coach baseball, make sure everyone plays a little each game, because running onto the field is just as important to some kids as catching a fly ball.
Put yourself in other people’s shoes.
Try not to judge the tantrum in the mall.
Share your own story. Talk about the time you were called a mean name, and the time you tried your first bite of spicy calamari. Talk about the time you won the spelling bee. Talk about your own triumphs and fears,
Don’t assume every person with autism is a math whiz who can memorize long strings of numbers and make lots of money in Las Vegas.
Don’t assume every person with autism will bag you groceries one day.
Don’t assume that every person with autism hates tags, or loves Kmart like Rain Man.
Never say the word retard.
Wherever you go, wherever you are, don’t be afraid to stand up for the underdog. They need you.
We need you.
Meet him halfway.
If you see a tall boy and his family eating in a restaurant, stop by, and say hello.
Tell your kids about him.
Tell your parents.
Tell your aunts and your uncles and your cousins and your mailman. Tell the librarian. Tell them all about the way he looked sideways at you when asked his name, and after a very long moment, in his halting voice, he spoke.
Jack. I am. Jack.
I never wanted to be The Person.
You know, The Person—the one in a marriage who handles all the kid stuff, like changing the diapers and checking the homework folder and buying shoes.
(The Person is also known as the Default Parent, The Micromanager, or the Helicopter Mom.)
I did pretty well for the first year I was a mother. Our oldest son Joey was born and, for the most part, my husband Joe and I handled the responsibility of taking care of a new baby fairly equally.
I didn’t care how he swaddled him, or what he which outfit he chose, or whether he used the blue pacifier with the duck on it or the green one with the frog when he fussed.
We exchanged uneasy glances on the couch late at night while we took turns rocking and soothing and walking our angry, mysterious baby.
Then he was diagnosed with autism. And things changed.
We didn’t sit together on the couch as much. We didn’t exchange the glances, and we didn’t take turns soothing. I think this was because, overnight, I became The Person.
After the diagnosis, I was the only person who could feed Jack his mashed bananas that he spit right back out or could rock him to sleep so he would wake up twenty minutes later screaming or could get him to look at me if he wanted juice.
I threw myself headfirst into specialists. I read articles. I researched therapy. I was frantic, and yet I thought I was the only one who understood him.
There I sat, on my island of invented expertise, like a carping queen in her ivory castle.
And of course, I took Jack right along with me. We looked around, and we looked at each other. We looked across wide, deep spectrum moat that separated us and we saw all the other people out there, having fun and laughing and sitting in the sun.
This was not good; for me, for Jack, or for my marriage.
See, when you are the only one who can do everything and you do it perfectly and you sneer and roll your eyes when someone else tries to step in and help, then you will wind up doing every single thing yourself. And this will make you mad. A little sad too, but mostly mad.
Because, if you are anything like me, you will blame your husband since clearly, he is very lazy. He is maybe even a little bit stupid because he doesn’t understand that the special diaper cream must go on every time this little hiney gets changed and if the bananas have any lumps then it won’t work. And the green bowl is really best because the bottom is flatter.
So you blame and blame and maybe you feel resentful. Resent is like a tiny seed that plants itself in your heart and your mind. Except instead of blossoming into a beautiful, silky flower, it grows into an ugly weed when all you really need is colorful petals.
This was me.
I bought the special diaper cream because I obviously cared about our son the most.
I mashed the bananas in the green bowl.
I sneered. I rolled my eyes.
And then we almost got divorced.
I am not even kidding about this a little bit.
Back then, I thought it all mattered so much. I thought that if I didn’t do everything exactly right then Jack wouldn’t outgrow his autism and our life would be miserable. That’s what the voices in my head told me, anyway.
Well, we were pretty miserable, but it wasn’t because of his autism. It was because I was trying to control my life’s unfamiliar landscape through ridiculous details like diaper cream and baby food.
It was because Joe’s opinion ceased to matter.
It was because I was alone and angry and sad on my island, and I didn’t even know how I got there.
Jack is thirteen now. I am forty-two. I have been living with his quirks and his anxiety and his autism for nearly a third of my life. I understand the island a little more every day.
People like me, we use smugness and sneering and bananas to protect a small inner light. This light, it flickers like a tiny candle on a windy day.
The wind is trying to control our vulnerability and stamp it out and make it disappear because vulnerability is so scary and it makes us feel weak and cold and alone. It makes us feel defenseless.
So we build a wobbly fortress around our candle out of sticks and stones and green plastic bowls. We have to hide it from the wind, and the world, and maybe even ourselves.
With my marriage crumbling before me, one stick at a time, I dismantled my fortress and I tried to weed out the resentment.
Thirteen years later, here in front of me is this man and next to me is this boy and they love each other a lot and their love is different from mine and I have learned that is very, very okay.
The thing is, Joe is much better at so many things than I am when it comes to this unusual boy of ours.
He always shows him the receipt when they go grocery shopping so Jack can see that apples were on sale but the grapes were more expensive than usual.
And when Jack is tired, or he has a headache, it is his father he seeks. He stretches his long body on top of Joe’s, and closes his eyes.
He is the gain to my loss—the ultimate balance sheet of marriage and parenting.
I can’t lie. Every now and again the old voice in my head starts to whisper, and I fight the urge to become The Person again. I read the latest research on autism and begin to panic, or I worry Joe won’t remember to give Jack his medicine when I’m out with my book club and maybe I should write down a little reminder,
He always remembers.
Do me a favor. Take a moment today, and look in the mirror. Look yourself right in right in the eye. Are you The Person? Are you standing in the way of a loving, messy, unpredictable relationship because you have marooned yourself on an ivory island?
Don’t stand in the way, that’s what I want to tell you. Don’t block the light from him, or her, or the world. Come out from beneath your pile of sticks, and take a deep breath.
The wind will stop blowing, I promise. You will stand straight and tall and honest in the still, tranquil air and nothing bad will happen to any of you. It is in the quiet space of light where life is lived best.
And remember, it’s never about the bananas.
I’m really scared about what’s going to happen to him.
I know. Me too.
It’s May now. The days are longer and warmer, and the air feels soft. Summer is so close, it’s as though we can reach out our fingers and touch it.
Your backpacks are probably all worn out and have a bunch of stuff rolling around in the bottom—elastic bands and fidget spinners and old worksheets you forgot to hand in to the teacher.
All of my kids are excited for summer, especially Jack.
You remember my son Jack, don’t you? He was in your class last year, for sixth grade. He had autism.
He still has autism, but he doesn’t go to your school anymore. Now he goes to a school in the town next to us.
I want you to know there are very good reasons why he changed schools, but it wasn’t because the teachers weren’t doing their jobs right, or because kids were mean to him, or because he wanted to leave.
He did not want to leave.
He left because last spring, when fidget spinners weren’t even a thing yet, he became very, very frustrated. He became aggressive, and unpredictable, and difficult to control. I’m sure you remember all the times you had to leave the classroom because he was throwing stuff on the floor and yelling loudly.
It was because in sixth grade, he did not understand why Pippi Longstocking might be very sad when her father died in a shipwreck, or how to divide three cookies between two children who were having a snack together.
The thing is, Jack’s brain is different. I mean, it has the same parts we do–the cerebrum and the cerebellum and all of that–but it doesn’t quite work the same way yours and mine does.
For instance, let’s say someone tells Jack that his money is burning a hole in his pocket. The part of the brain responsible for interpreting language will hiccup a little as it tries to put the words burning and pocket together in a way that makes sense.
Then the place in his mind that handles something called cognitive flexibility, or the ability to switch your thinking between various concepts and ideas, will seize up like an engine without enough oil. See, his way of thinking is too rigid to understand that money doesn’t burn holes–it’s just an expression that really means he likes to buy things.
He might start to get agitated, and pace the room, and maybe even scream, because the part of his brain that manages fear and anxiety is a bit off, and when he hears about something burning a hole in his pocket he’ll right away think about a fire in his pants and he will get scared, because he’s scared of fire.
I bet your mom or dad helped you with your homework a lot this year. Maybe they sat with you at the kitchen table or the small desk in your room, and as the late afternoon sun turned to a purple-y dusk, you bent over the papers and read the directions out loud. They reminded you to borrow the one and subtract the two, and quizzed you on your spelling words.
I didn’t always do that for Jack when he was in sixth grade. Whenever I tried to take his homework out of the blue folder he decorated with smiley stickers, he would scream and hit his head with his hands and run circles around the room like a lot of bees were chasing him.
So I did the only thing I could think of to do. I put the homework back in the folder and I tried to forget about it. I hugged my boy Jack even though he does not like hugs and I tried to make him feel calm again. I tried to quiet the bees.
For this, I failed him.
This is the exact thing I thought to myself last fall, when I had to peel him off of the front porch on the first day of his new school. He was crying the kind of cry that makes no noise. He just had tears sliding down his face. I held his hand down our long driveway and convinced him to get into the minivan that for him, had replaced the long yellow bus.
As we walked together, he put his head on my shoulder and he squeezed his eyes shut tightly.
He did not want to go. He did not want to leave your school with your cafeteria and noisy hallways and loud, clanging lockers.
There are no lockers in his new school.
I failed him.
Do you know what failure feels like? It feels like a scratchy coat in the middle of July. It is hot. It is uncomfortable. You hate it, but at the same time you pull it close to your body and button it up tight because it reminds you of who you are—of all the things you did and didn’t do when you had the chance.
All last fall, as the leaves turned orange and gold and crunched beneath our sneakers, Jack was devastated. He was frantic. He was sad. But as winter’s new snow covered the landscape like smooth, white paint on an empty canvas, he began to settle.
And his new school, well, it’s fantastic. It’s full of amazing, kind people who know a lot about autism. It’s very, very small with only ten kids in the whole middle school so the teachers have a lot of extra time to listen, and watch, and figure out the way his brain really works.
And when he gets very, very mad, they have strategies to make him calm again so he doesn’t hurt anyone else—so he doesn’t hurt himself. They know about the bees.
At last, he has room to spread his wings—to fly and to fail and to soar yet again. Slowly, he is learning.
Yet still, he wants to come back. Almost every day, he asks if he can go back to your school and be with all of you. He checks his big brother Joey’s backpack for the lunch menu and he sits at the counter and studies it carefully.
Joey. For you. Have tacos on Thursday.
No matter how many times you wave to him at the baseball field or come up to him in church and say hello, somewhere deep down inside of his heart, he feels forgotten. He feels lost.
He still misses you. He misses your games at recess even though he never understood them and he misses sliding his lunch tray through the line and picking out his milk.
The thing is, we need people like Jack. This may be hard for you to understand right now, but we do. People like my son—whose brains have all the same parts and yet think very different thoughts—well, they add something special, and important to our world. They take the white paint, and they make it colorful.
They should just make. More cookies.
I guess what I am trying to say is that even though his brain is different from ours, it is not broken. He is not broken.
I hope that next year, when you look around realize he is still gone, you’ll think of him. You’ll remember him. And you will smile.
Have a wonderful summer.
Lately I’ve been taking a few minutes after my son Jack has a meltdown to sit and talk with him. I want to know more about what it felt like, what set him off, and how maybe next time we can do things differently. Now that he’s thirteen, he can answer me a little better.
Then I tell him what it was like for me, as his mother. He doesn’t always listen or understand, but I feel like it is somehow important for him to hear me.
After we talk I sit at my computer, and I try to weave both of our experiences together like the silky yarn of a tapestry. I hope that one day I may look back, and understand the entire picture.
My name is Jack.
I have autism.
To me this means I know exactly how many minutes every Disney movie is and I don’t sleep as much at night and I look down at my feet instead of into your eyes.
When I have an idea in my brain it is big and huge and I cannot think of one other single thing. It feels there is a big elephant who has been squashed into a tiny elevator. The other ideas and thoughts get pushed into the corners until I can’t see them anymore.
When the doctor talks about my autism, he doesn’t say anything about the Disney movies or the elephant. Instead, he says words that buzz in the back of his throat all quiet-like. Then the words turn into a bunch of bees and they explode out of his mouth and into the room, their stingers all sharp and pointy and ready for stinging me.
Last night we had to go to something called opening ceremony for baseball because my brothers and my sister play on teams. My father is the coach.
I have never played baseball.
I have never been on a team.
My father has never been my coach.
This ceremony was at the baseball field in the middle of our town and my mother said we only had to go for a little while and then we would go to Dairy Queen after so I could get the blizzard of the month, which is vanilla with pieces of cookies and brownies. I talked about this a lot of times. I was excited and I felt happiness.
But when we walked out of the car and down the sidewalk and onto the field, there were lots and lots of people. Some had on shirts that were bright green or red or yellow and it hurted my eyes with the color.
A man was talking loudly and fastly into a microphone and I couldn’t figure out his words.
Bugs kept flying all around my face and one landed on my forehead. I tried so hard to hold it all on my inside but I could not take the colors or the microphone or the bugs for one more second. I stared to scream. I started to run and jump.
All around me the people blurred together in my eyes like someone had smudged them with a paintbrush. But when they saw the madness on my face, one by one they stepped towards my mother with their arms out wide.
Would he like to sit in the dugout, where it’s quiet?
Maybe he needs some water?
I don’t blame him, it’s very crowded tonight.
I have autism and sometimes it is very sneaky and it hides and maybe you wouldn’t know it when you walk by me because I can look like a regular boy. But the people in my town, they know it.
They know because they see me in Walgreens when I get very upset if they don’t have the gum I like and I shout where is my gum and the lady who works there says buddy, we’ll get it for you next time, I promise.
They know because they see me at the grocery store when I jump down every aisle and I try to touch all of the lemons so I can feel their bumpy weird skin on the tips of my fingers.
They know because they see me at the pool when it takes me a very long time to decide if I want to jump off the diving board and the line piles up behind me with kids and the lifeguards ask them nice-like to wait for me.
Be patient, guys. Jack needs some time.
The people in my town see me. They know me.
A town is where you live. It is mostly buildings and roads and houses. In our town we have three churches and two pizza places and even a small park.
But a town is more than buildings. It is arms stretched open wide and faces lifting up into happy smiles and a cool drink of water on a hot, buggy baseball night. It is lots of claps after I make a cannonball with my arms and legs curled tight like a turtle.
In our town, my mother knows that even if others have not walked the same dusty trail into the cool darkness of the dugout, they appreciate the path she takes.
She knows there is an invisible circle around the buildings and the churches and the pizza places and inside of the circle, no one will hurt her boy named Jack.
No one will hurt me. They see me. They know me. They like me.
Even if I am different because I have my autism, I can still belong.
Finally my mother she caught up to me behind the metal bleachers that are so cold and hard they bite into your legs if you are wearing shorts. She took my hand in hers, and she rubbed my back. We walked together away from the color, and the noise, and the bugs.
We stood in the way back, in what they call the outfield. The kids and the grown-ups and the microphone were far away, like little ants. I could see my father standing in his blue jacket. He turned to me and he waved and I felt better.
Because maybe he will never be my coach on a team and wave me towards home plate, but he will always and forever and ever be my dad. This makes me glad.
If you live in a town with someone like me, someone who has autism and who is jumping and screaming and swatting at the bugs, be patient.
I am trying.
The blizzard was good with the cookie pieces. Mine melted a little on the way home. That was for me okay.
The other day, when we were on our way to the grocery store, you asked me a question.
Whenever you ask a question, it doesn’t sound like a question. It sounds like an announcement because you don’t lilt your voice at the end or change your tone at all.
How do. Grown-ups have it. The autism.
I was a little taken aback. I mean, we were sitting in the car and just two seconds before we had been debating whether chocolate cake is better than strawberry.
I told you the obvious answer is strawberry, remember? It’s true. Everyone knows this. I told you the Queen of England and Nicki Minaj and even the Pope himself like strawberry better than chocolate, so it is, indeed, a fact.
I was trying to wind you up a little and to make you laugh. See, you don’t laugh a whole lot. You hadn’t smiled in days.
Anyway, we were talking about different flavors of cake and I thought it was a nice little back-and-forth conversation—which doesn’t happen all that often with you—and just like that, you changed topics on me. You got all serious.
Will I. To Drive.
When you were first diagnosed, I was actually happy. Can you believe that? I was happy when the doctor looked down at you, toddling around the exam room, and said quietly, “Mrs. Cariello, I believe he has autism.”
See, I was happy to have a reason for all the stuff you did and didn’t do. I could explain why you took the vacuum cleaner apart all day long and clapped your hands over your ears and screamed if you heard a dog barking. Finally, I could tell all the other parents at birthday parties and play dates that you aren’t just weird or quirky or strange, no, you had a diagnosis.
Oh, Jack? Well, he has autism. That’s why he doesn’t answer you when you call his name.
For me, the doctor’s words were an umbrella in the midst of a storm. I was more than glad to stand beneath it, and take shelter from the rain.
For months afterward I’d lie awake at night and imagine what you’d be like in kindergarten. Shy, maybe—on the quiet side because your speech would probably still be a little delayed. You’d be taller than the other kids, with a backpack over your shoulder.
I pictured you in third grade, sitting on the bus next to your older brother Joey. Maybe you’d wave to me through the window.
I thought about fifth grade, and your years as an awkward, gangly teenager.
I was scared, you see. I didn’t know what the future held for my quiet, mysterious toddler, so I went ahead and invented my own.
I guess you could say I pictured you recovered—shedding your autism like a springtime caterpillar in your cozy cocoon, all at once turning into summer’s bright, incandescent butterfly.
I did not picture you as an adult. I never got that far.
We have a long road ahead of us. Next month, you will be thirteen; a teenager, and you are almost none of the things I first imagined you would be.
You are not shy.
Your speech is not just a little delayed.
You have never once waved to me through a window.
You have not recovered. If anything, your autism cocoon is tighter—more snug—than ever.
Do they for. Get the married.
It’s like the two of us are standing in the lobby of a very tall building. We are waiting for the elevator, craning our necks and looking up at all of the floors. Each one is labeled with the usual stops for the average person who does not have a diagnosis.
And the hardest part is, Jack-a-boo, you may not visit every floor. The spectrum elevator just might whiz on by some of the stops altogether, while others may take longer for you.
When I picture you as an adult, the reality of your diagnosis hits me like a ton of bricks.
Every day, someone will find you annoying, or weird.
Every day, someone will think you are dumb.
Every day, you will be misunderstood.
Every day, you will feel as though you don’t belong.
You know how April is Autism Awareness Month? We call it that because it’s the time of year dedicated to raising awareness about Autism Spectrum Disorder.
This means it’s our chance tell the whole entire world that yes, autism can be hard, and scary, and mysterious, but sometimes it can be pretty cool too.
I don’t know when it started exactly, but now lots of families put blue lights on their houses and wear special t-shirts with ribbons on them, the ones that look like they’re made out of puzzle pieces.
We’ve never changed the lights on our house to blue. We don’t have any t-shirts. In fact, we’ve never done anything at all to celebrate Autism Awareness Month. I don’t know why. I think one year I looked around for a blue light bulb but I couldn’t find one so I just gave up and forgot about it.
Will for me. To be a father. Like Dad.
The thing is, I spend three-hundred and sixty-five days a year, seven days a week, explaining autism to the world around us.
Oh, Jack? He has autism. You just have to give him a little extra time to answer you.
Jack? Yes, he’s making great progress, thank you.
My son Jack? He does have trouble sleeping, but we’re working on it.
When I’m not explaining the particulars of the spectrum disorder—the rigidity and the anxiety and the medication and all of that—I’m telling people how we feel about it.
He and my daughter love to bake together.
It was a tough summer but he’s finally settling down.
Puberty? Please, don’t even get me started.
In fact, I spend so much time spreading awareness around, that I forgot about you; my eternal child, my tentative boy, my hopeful son.
Where for. Will I work. For a job.
I forgot to tell you all the things I think every time look into your earnest face. Let me tell you now, as the April’s trees grow their slow green buds and the ground thaws beneath our feet.
You aren’t dumb.
You aren’t weird.
You are everything I never dreamed you could be.
When the world feels cold, and cruel, and unforgiving and life’s elevator has ground to a frustrating halt, please remember that behind you stands a family.
You belong here. You belong to us.
Happy Autism Awareness Month, my sweet Jack-a-boo.
Editor’s note: I wrote this post after talking with Jack about what holiday parties are like for him. He read it over, and reminded me the cookies were shaped like snowmen. I thought they were reindeer.
My mom told me we are going to your house on Saturday. For a holiday party.
The last time I was at your house was December 18, 2010. I remember you had cookies shaped like snowmen with chocolate chips for the eyes. I ate three of them.
I was five years old. I had autism.
Now I am twelve. I still have autism.
Last week my mom took me to see a doctor. It takes us usually forty-two minutes to drive there and we always stop for lunch at the same restaurant on the way home. It’s called the Common Place Café and it is really small and has wooden tables that are shiny. I order the cheeseburger and it is very good.
I like this doctor a lot. She is called a Developmental Pediatrician and the first time we went to see her was April 14th, 2011. It was a Thursday. I was in first grade and I was having lots and lots of fears about the weather and food that was orange and going to sleep at night in my bed.
She said I had something called anxiety. I call it my fear.
This time the doctor and my mom talked a lot in the small office. Their voices were quiet almost like whispers but not exactly.
Better he’s sleeping more almost all night.
After one hour and four minutes, the doctor closed her folder and said to my mother, “Remember, this time of year is hard for kids like Jack. The holidays feel very chaotic to him. People will think you are controlling and rigid, but try to keep him on his schedule.”
I like my schedule. It makes me feel safe and cozy and warm like I am wearing a big, soft blanket.
I like to go to bed at 8:30.
I like to wake up at 6:00.
Then I take my bath. This takes me nineteen minutes and afterwards I put on my clothes and eat my waffles.
I like parties. I like to try the cookies and look inside people’s houses and especially to open presents.
But at the very same exact time, parties are scary-hard-unusual-different-every-time for me.
Firstly, I don’t like to wear itchy clothes like red sweaters or khaki pants with buttons. With the pants I always have a fear that I won’t get them to be unbuttoned in time for the bathroom. That would be for me embarrassing.
And people like to hug every minute. I do not like to hug people all the way. I don’t mind a hug with one of my arms but both arms is too much closeness and touching for me.
Then there is the loudness, with everyone talking all together and laughing big laughs and putting clanging pans into the oven. It echoes in my ears and repeats over and over in my brain. I have to sift through the sounds the way a small boy or girl sifts through the sand on the beach to find the prettiest seashells.
Sometimes, even though I don’t want to, I get very, very mad.
My mom says it’s kind of like an orchestra. The tag on my shirt scratches my neck a little bit, and then a man standing too close to me is eating a cracker piled high up with crab dip and it smells very strongly in my nose. The flutes begin to softly hum their notes, and I start to bite my cuticles.
I rub my fingers down my nose.
The clarinets join the flutes. The saxophones begin their music, and the trumpets make their trumpet-y sounds.
I jump higher.
I spin in circles.
I pull at the hair right above my ear.
These are the signs that my madness is coming.
My mom does not relax at parties. Sure, she may look calm and happy, talking and laughing with her plate that has a lot of shrimp on it.
She just loves shrimp and she always eats it with red spicy sauce.
But do not be fooled by her. While she is talking and laughing and dipping her shrimp into the sauce, she is watching and looking all the time. She stands alert, like a soldier on the edge of a battlefield.
She is watching to see if I snuck out the front door quiet-like to look at the Jeep Cherokee parked in the driveway.
She is keeping an eye on the staircase to make sure I don’t wander upstairs and go through the medicine cabinets.
She is checking the buffet table so she can catch me before I use my finger to poke holes in all the soft, squishy dinner rolls that are piled in a basket.
At the very exact same time she’s watching, she’s listening.
She’s listening for the steady rhythm of the flutes, the hum of the saxophones, and the loud, brassy trumpets.
She knows, you see. She knows if we get to the drums we are too late for catching the madness. Once the cymbals make their big loud shiny crash it is too late for me I am there I am screaming I am mad I am alone I am alone I am done.
The room is too hot and my clothes are too itchy and the food smells like it is all mixed together and people are staring at me and I don’t know what to do.
It’s not what I want. I hope you know that. I don’t want to get mad. I don’t want to ruin your party. When this happens there is a place deep inside me—a place no one else can see or know or touch—where I feel embarrassed and ashamed. A small dark awful small place where I hate myself.
I am all the time trying.
I say this a lot. I say it when my mother tells me I have to keep my body calm or she asks me to wear the soft shirt with the red and white stripes she bought specially at the store that she says is festive.
I am all the time trying.
People like to tell my mother and father things that on the outside sound like nice frosting-on-a-cake ideas. But when you listen hard, they don’t sound like sweetness and sugar. They sound like sour judgement.
How about gluten-free?
You know, I hear of great treatments for kids like him out somewhere out in Colorado.
Come on, just relax! It’s the holidays, let him touch the rolls if he wants.
The thing is, my mom and dad, they know all about the gluten-free and the treatments in Colorado.
And when it comes to autism, they know there is no holiday. There is no Christmas-Hanukkah-carve-a-turkey-relax-day. It is 356 days a year of progress and hope, disappointment and fear.
This Saturday I promise I will do my best to not get mad.
It helps if I have a quiet place to go when the music in my head is too loud. It doesn’t have to be anywhere fancy—a small bedroom that no one ever uses, or even a room where you keep all of your sewing stuff is good too.
And if you are nice and you give me a present, try not to get too sad or maybe a little mad if I don’t seem so excited. I love presents. I really do. On the inside I am jumping up and down and my heart is skipping like it has a jump rope. But it’s hard for me to get my outsides to match my insides.
Follow my mother. Watch carefully as she sets her plate down and walks to me and takes my both of hands in hers. Listen to her words.
Shhhh, Jack. It’s okay. Let’s calm down, I’m here now.
Watch my father as he puts his strong hands on my shoulders and turns me around until I am facing him.
Come on, buddy, let’s take a walk.
See, my mother and my father know what’s best for me. They know autism is little more than a delicate ballet, full of forward movement and backward retreat. They know how hard I am trying to march to everyone else’s tune, even when it’s easier to dance to my own beat.
Don’t do the judgement.
I think what I would like the very most at the party this Saturday is for you to talk to me. Try to get to know me. I am interesting. I am funny. I am smart. I love Disney and I bake cakes a lot and this year I wrote a letter to Santa and asked him for a selfie stick.
I am here.
I am waiting.
I am all the time trying.