[Editor’s note: I wrote this post based on conversations with my son, Jack. He read it over and asked me to tell you that he always has a sandwich after school now, except on Tuesdays. On Tuesdays he likes to have cereal.]
My Tell-Tale Heart
I am Jack.
I am a teenager.
I have autism.
I am not like everyone else.
I jump around the room to calm my body.
I have a hard time
to find the right words.
I have very big thoughts
like an elephant in a crowded elevator.
All the time we talk about autism in my family.
At first for me
I was mad to talk about it.
But now, for us it is normal.
It is not a secret.
I am not a secret.
All throughout the house
I leave clues.
Stacks of cups in the cabinet,
organized by color.
Grocery lists by the bed.
Movie times in the calendar.
I am not a secret.
I am a boy.
My school is different.
Two years ago,
I did not want this school.
I screamed and said bad things.
I tried to run away.
I had my madness.
Two years now.
Two years, and
things have started to change,
Not rabbit-out-of-the-hat magic.
More like caterpillar-into-butterfly magic.
I let go of my madness
and made space in my brain.
I am learning.
I am knowing things.
Newton’s Law of Motion.
How to solve 5x – 2 = 18.
The Tell-Tale Heart
by Edgar Allen Poe.
Yes, it takes me longer
to learn the equations and the laws and the words.
Until it makes sense to me.
I am not like anyone else.
My mother says.
I am a luna moth
lighting in a snow tree.
This week, she came from a meeting,
called the I.E.P.
This is where
my mother and my father and my teachers and my therapists and my case manager
sit around a shiny wooden table.
To talk about goals
When my mother walked in the door,
her face was mismatched.
Busy, happy hands.
Upturned eyes from my after-school sandwich.
Jack. We met with your team.
I waited without words.
They said it is possible
you could graduate
with a high school degree.
A high school degree.
A high school degree.
When I am eighteen years old.
Right away I thought about all the things
other people have
which might also be mine.
A white tent in the backyard.
Long sandwiches across the table.
A cap on my head and a diploma in my hand.
A degree. For finishing high school.
there is work ahead of me.
A senior project.
School all year round.
But I can do it.
She thinks I can do it.
They think I can do it.
I am not like everybody else.
I have a small fire within me,
and every day it burns a little brighter.
I will not give up.
My tell-tale heart.
That tells it’s own tale.
Jack-a-boo? Buddy? What are you thinking?
Only I couldn’t find the words to explain
what is in my head.
I am Jack.
I am fourteen.
I am possible.
Objects in motion will stay in motion.
An object in rest will stay in rest.
For every action there is equal and opposite reaction.
A lot of times people ask me to describe you, but I’m never sure what to say.
You are fierce.
Forgotten amidst the throngs of baseball uniforms threading their way to a green, green field.
Cheering on the game in cold metal bleachers, no one remembers the boy who does not play.
The boy who sits home on a red beanbag chair, uncertain and alone,
too scared of the announcer’s booming voice to venture outside, and see the ball fly.
You are forgotten amongst the bright lights of award ceremonies,
and tuxedo prom pictures,
and graduation diplomas.
See, while others stand in the light,
you crouch in the dark,
and watch from the shadows,
as life unfolds before you.
How to honor you?
That is the question I turn over and over,
like a penny in the palm of my hand.
How do you honor a person who overcame his fear of dogs?
And learned to manage a bite of chicken pot pie?
And finished a math worksheet in less than an hour without screaming?
There is no trophy for memorizing the running time of every Disney movie,
or going to school all summer long,
or trying a new food at the dinner table.
There is no prize for the courage it takes
to live in a world of sameness, when you are different.
There is no award for autism.
You are a brother.
You are my son.
You are my sun.
At times, you burn me with your bright hot anger.
Then you warm me with your tentative smile.
You are the tympani of my sleepless nights.
And the rhythm of my waking days.
You are my heartsong.
All day long, we tell you.
Do it our way.
Not your way.
Learn this way.
Not that way.
Be like us.
Not like you.
You are wrong.
We are right.
You are less.
We are more.
You are a number, a statistic—a brightly-colored slice of the pie chart.
One in sixty-eight.
Or is it one in fifty-two?
You are the child for whom everything must be explained.
The covert made overt, the secret turned obvious—the mystery solved.
Buddy, let Aunt Sarah sit next to Uncle Angelo at the table.
No, Jack, we don’t tell the server she made a big mistake because she forgot your root beer.
See my face? I am angry right now, Jack-a-boo.
You are a paper boy, made of static, calm words on a page.
The letters do not breathe or move or change,
but they will follow you for the rest of your life, miniature ants at a picnic.
Autism Spectrum Disorder.
Diagnosis and child so closely intertwined, as to seem inseparable.
Yet you are.
Able to be separated.
If I simply look long enough.
If I wait, and I watch, and I wonder, I will see.
Because just when I am certain there is only black-and-white,
the color of you rushes to the surface.
You are a one-arm hugger,
and a surprise dog lover.
At first, an infant who screamed and writhed in my arms.
Then, breathless chasing beneath
yellow fluorescent lights in a nameless store.
Under tables, around chairs, behind shelves piled high with sweaters.
Stop, Jack! Wait!
Then, sixth grade.
Angry, sad, depressed, confused, bewildered.
Now, fourteen. Better.
You are shape of a man, with the heart of a boy.
Where will you go?
What will you do?
Who will you be?
You are an uncertain future, unfolding as we speak.
Are you lonely?
Are you scared?
I am lonely.
I am scared.
You are every parenting mistake I have ever made.
The times I yelled,
and clenched my teeth until my jaw ached.
The moments I cursed your autism,
and vehemently wished for a different life.
The minutes I longed to take back,
and do over again.
You are funny.
You are honest.
You are brave.
You are more than autism.
It’s late August now. The days are still warm, but by early evening there is a hint of autumn in the air.
You are probably thinking about your first day of ninth grade—your very first year in the high school on the hill.
This is an important time for you. A lot will happen in the next four years. Maybe you’ll make the honor roll, or ask someone to the prom, or try out for a varsity team.
My son Jack is thinking about his first day of school, too. He’s also going into ninth grade. I mean, technically he’s in ninth grade, because he’s fourteen and this is his ninth year of school but to be honest, his school year looks a little different from yours.
Do you remember Jack? The boy with autism who ate hot lunch every day in sixth grade and called the teacher terrible names and threw books across the room?
He isn’t going with you to the high school on the hill. He isn’t coming back to public school this year. In fact, he may never come back.
See, your school is not made for kids like Jack. It is made for kids like you. And that is perfectly absolutely okay. It is made for what is called the majority and Jack, with his complicated autism brain, is more like the minority.
Basically, there are less kids like him and more kids like you. Again, perfectly, absolutely okay.
But he was not doing perfectly, absolutely okay in regular school. Two years ago he cried every afternoon and he had nightmares at night and he talked about knives and life and death and friendship. His feelings were very big. I did not know how to shrink them. Neither did he.
I would get the call and then I would drive to the school and it felt like everyone who saw me walk down the hall was whispering and I got to the classroom and he was shaking in the corner with tears in his eyes and I would hold onto him and he would hold onto me. Together we swayed, like sunflowers beneath a summer sky.
It’s been two years now—two years since his dad and I and a whole big team of people decided he should go to a smaller school in the town next to ours, so he could cocoon like a caterpillar and feel safe and warm. This school doesn’t have a cafeteria, or a varsity team, or a prom with tuxedos and music and long, sleek limousines.
What it does have is a big board where every morning Jack and the other students identify how they are feeling right when they walk in the door.
There are big bouncy balls in the classroom, and the lights are soft and dim.
My son, he needs these things. He needs to identify how he feels before he can figure out how to learn. He needs to be able to bounce on a ball when his body becomes what they call deregulated, and he works better without bright fluorescent bulbs glaring down on the paper.
I want to tell you something not everyone knows. It’s almost like a secret. We don’t choose our feelings. Can you believe it? We don’t choose to be happy or anxious or mad or sad. Our feelings come to us, and they are what you might call pre-verbal. This means they are faster than speech—in a race against our words, feelings take the first place trophy every single time.
And here’s another secret: in between the feeling and the behavior is a tiny pocket of air—almost like an iridescent bubble a child might blow from one of those plastic wands. This bubble is called choice. It is exactly one breath long.
When it comes to feelings and behavior, we can make a decision about how to act. Do we cry? Or scream? Or laugh right out loud? Maybe we hide underneath the covers, or clap our hands in delight.
In Jack’s brain, the choice bubble is so small, he has a hard time seeing it. He doesn’t always realize he can do anything but throw things and say bad words when he gets lightning-hot mad.
He’s doing pretty well these days, in his new school. He’s made a lot of progress. He talks a lot, and asks questions. He can write a paragraph all on his own about something he read in a book. He’s no longer perched on the edge of a branch, like a bird poised for flight or fight.
Most importantly, my son Jack is learning how to balance the bubble on the tip of his finger, instead of smashing it to the ground in a formless rage.
In addition to the stuff about feelings and the bubble, I also wanted to tell you about a woman I once knew. She worked at your school, but last year she retired, which means she left her job to do great things like travel and read books and visit her children.
I called the office to tell her goodbye, and they said she had already left. She’d cleaned out her desk, and taken her picture frames and her plants and packed them all up for good.
I was sad to hear this.
I was sad because, in the past two years, I never told her all the things I should have told her.
You see, I have known her since Jack was three years old and still in diapers and biting other kids and throwing great big angry tantrums. I would call her, and tell her about the biting and the screaming and she was quiet and just let me talk. My talking, well, it felt like hot air escaping from a balloon.
When he was twelve years old, I called her and I told her about the knives and the friendships and the fear, and she never once made me feel terrible. On the other end of the long phone she simply nodded. I couldn’t see her but I knew it. I felt the nodding. It felt like a hug.
And then one day at a big meeting with lots of people around the table she agreed your school was not right for Jack, so he got changed to the school with the board that talks about feelings.
He got the chance to be who he is, instead of who you are.
This is a very big, powerful thing, and she helped make it happen.
Maybe some days her job felt meaningless, like she was just shuffling paper around her desk and signing forms, but it wasn’t meaningless at all.
She changed his life.
She changed our life.
She gave him a chance.
This year, on the first day of school, when she sits at her kitchen table and drinks her coffee and thinks about all the kids who are making their way up the hill and through the high school doors, I hope she remembers a boy named Jack.
I hope you do, too.
Have a great year.
Come here, Jack-a-boo. Sit next to me on the couch.
You can look through the DVD’s in just a minute. Yes, I know The Mummy is three minutes longer than Cool Runnings.
For now, please, sit with me.
See, I’ve been thinking lately about promises. You know, like how I promised that we would go to the pool and swim but then it rained and I had to tell you we couldn’t go, and you were very mad at me? You told me over and over it is okay to swim in the rain.
For I will already. Be wet.
The thing is, buddy, there is so much I want to promise you.
I wish I could promise you every person in the whole big world will see you and know you and love you like I do.
I wish I could promise that I’ll be around forever.
I want to promise you a high school diploma, and a chance to drive your own car.
I want to promise you that you will one day fall in love, and maybe have a good job, and take a vacation with your friends.
As of right this minute, you have no friends. There is not a single person you call, or invite over to the house, or even mention.
I think its safe to say I can’t promise you any of these things.
I can, however, make other promises.
Jack, I promise to see you more for who you are, rather than what you have.
It’s not like I’m going to forget you have autism or anything. I mean, I’ll still notice the swimming and the way you need routine. I’ll still gently nudge your fingers away from your face when you started to pull on your lashes or twist pieces of your hair.
But I won’t let it eclipse the boy within the diagnosis.
I promise to tell everyone I know about you. I will tell your story. See, you are not a secret.
Autism is not a secret.
I promise to remember I am not your teacher, or your occupational therapist, or your speech pathologist.
I am not your counselor, or your bus driver, or your case manager.
I am your mother.
As your mother, I promise not to make every second of our waking day about progress, and learning.
Sure, I’ll insist you read for ten minutes and I’ll show you how to change the shower curtain and flip an egg in a hot pan.
But I’ll laugh with you when the egg breaks.
I promise to help change the way people think about autism. I will help them see you as I see you: rigid and funny and smart and anxious and sometimes sweet but always interesting.
I will put myself in your shoes—and your body and your heart and your brain—as often as possible.
I promise to teach you how to fold towels, and clean the kitchen, and change a light bulb, and put gas in the car.
I will take you everywhere—museums and planetariums and boat rides and the farmer’s market. I won’t care little bit if people stare at us.
And people do stare. I know you see it. I know you know. But, listen, buddy, the staring is a good thing.
Once they stare, or listen, or look, we’ve got their attention. We can tell them all about you and your autism and how when you were two you figured out how to start a car.
Remember that? You snuck into the garage when I wasn’t looking.
And the next time they see a boy or a girl who hops and flaps, they will remember you. They will see you turning the key with your chubby 2-year old fingers, and they will hear the engine roar to life. And they will be kind.
This is our job. To create kindness when judgment may otherwise prevail.
I promise to be your advocate, your champion, your truth-teller, and your voice—even if it means sharing the starting-the-car story one hundred million times.
Autism is not a secret.
You are not a secret.
I promise to keep up with yoga, and run on the treadmill, and get annual mammograms. I may not live forever, but I don’t want to leave you any sooner than I have to.
I promise to learn from my mistakes.
I have made so many mistakes.
I have screamed, and snarled, and cried.
I have worried, and wept, and raged.
I am trying.
Few people know what it’s like to love someone like you.
I love you the best way I know how.
My love for you is flawed, and pure, and real, and honest, and loud. Its like thunder and sunshine all mixed up together.
From now on, I will accept what you can give, whether it’s a stiff one-arm hug, the occasional eye contact, or the chance belly laugh.
I know you are trying, too.
That doesn’t mean I won’t push you to do more. Oh, I always want you to do more.
I want you to reach for the sky, my little Jack-bird. I want you to look right up into the clouds and decide you want to fly.
Come here, sit a little closer. I know, I know. You don’t want me to touch you or put my arm around your shoulders. I won’t.
But I want to tell you something. Let me whisper to you quietly.
I hate that you have to go to school all year.
I hate it but I can’t tell you I hate it because I told you have to go and if I admit that it’s hard for me too, then my thin veneer of resolution might crack and shatter.
The thing is, I miss you during the day.
All day long, you are missing.
You are missing until 2:45 when the bus/minivan stops at the end of the driveway and you get out, all long legs and gangly arms and scowling face.
When this happens, life begins again. I am thrust back into the throes of autism—of schedule-planning and car-key-hiding and general uncertainty.
I love it. I really do.
But sometimes I hate it a little bit, too.
Sunshine and rain.
Storm clouds and rainbows.
I promise to let you challenge conventional thinking.
I wish I was half the person you are.
I am lucky to know you.
I am happy you are my son.
I am your mother.
I will help you fly.
Unless you’d rather swim.
Today, I will be here.
Today, I will remember that when it comes to autism, there is no right. There is no wrong. There is just me, and a 14-year old boy, and we are both trying our very hardest.
I won’t think about all the stuff I wish I had done differently when he was little, like smiled at him more, or enrolled him in music class, or switched the laundry detergent to a better brand.
I won’t worry about the future, like if he will be able to find a job or make a friend.
I will remind myself that everyone the world over has twenty-four hours in a day, seven days in a week, and fifty-two weeks a year.
A clock is just a clock. With the steady tick of its hands, it measures hours and minutes and seconds.
It does not measure joy, or progress, or pride.
It does not measure a boy.
Time does not measure a boy.
He will get there. When he’s ready.
Today, I will remember his autism was not a choice. He didn’t ask for it.
He did not ask to go to a special school.
He did ask me ninety-million times yesterday if I liked stuffed crust pizza from Pizza Hut though. That was kind of annoying.
I will remember that we all experience happiness differently.
We all experience success differently.
Today, I will wait. Through the silence, I will listen for intention. I will take three extra seconds, and really hear him. I will not rush him when he tries to speak, or shake my head impatiently.
I will make a point to talk about what he wants to talk about, instead of redirecting him to topics I feel are more appropriate.
And when he jumps in his favorite spot alongside the table in the kitchen, I will walk over, and I will jump with him.
I will join him in his world instead of stuffing him into mine.
I will be happy with who he is—wherever he is.
I will remind myself there is purpose behind his behavior.
There is a reason why he jumps.
There is a reason why he asks about stuffed crust pizza.
There is a reason why he goes to a school in another town and only has four kids in his class.
He has autism. This is his reason.
Today, I will remind him he is important.
I will remind him he is loved.
I will remind him he is safe.
I will stare down the slithering snake of anxiety, and coax it back into its corner. I will use gentle words, and soothing touches, and kind ideas.
Like a long strong hand on the end of a kite, I will hold onto my Jack-a-boo, and keep him in the here and now. I will tell him we don’t need to worry about hurricanes, or spiders in Brazil, or whether or not 6:30 pm is too late to eat dinner.
I will be vulnerable. If I need a break, I will ask for it.
If I need help, I will ask for it.
I will not compare him to his brother. I will not compare him to my neighbor’s son, or my nephew, or the boy on the bus.
And if we go out to a restaurant or to a Little League game, and someone stares at us, I won’t feel a twinge of upset-ness inside my heart.
I will remind myself that the staring is an opportunity to teach—to explain and to show and connect.
It’s a chance to change the conversation from about us to with us.
A conversation about us is dark. It is a secret whispered into a cupped palm, while their eyes shout out loud.
What’s wrong with him?
Did you see the way he jumped?
Could it be autism?
A conversation with us is light, and airy, and pretty.
Oh, he’s okay.
He just needs to move a little. It’s called stimming.
Yes, he has autism.
Yes, he has autism.
I will tell them things.
I will tell them he loves avocados.
I will tell them he is right-handed but sometimes he eats with his left hand, and
I will tell them that they can’t imagine what it’s like to love a boy like him.
Quietly, with steady words and a simple story, I will advocate for my son and his needs and our life.
Today, I will put my head down, and mind my own business.
I won’t get distracted by all the new studies on the Internet, or the articles that say there will never be any funding for a child like him, or that autism is caused by the pollen found on the knees of a bee.
Today, I will serve another mother. I will pat her shoulder, or open a door, or offer a small smile. I will ask if I can hold her bag while her toddler squirms in her arms.
Today, I will do the best I can.
I will remind myself that I know what I am doing, as much as anyone can possibly know what they’re doing.
I may lose my patience, or leave some laundry in the bottom of the basket. Maybe I won’t cook dinner, or I’ll snap at my dark-haired husband when he walks in the door ten minutes late. In the next twelve hours, anything is possible.
But I will forgive myself for my mistakes. When nighttime rolls around, I will lay my head upon my pillow and close my eyes. And when the morning sun blossoms like a new flower, I will begin again.
I will love this boy for who he is.
And I will love myself for who I am.
I will remember that in the midst of the mess, there is often a strange sort of beauty.
Today, I will be fearless.
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.