Did I Tell You?
Did I tell you my son has autism?
It’s usually one of the first things I mention, not because I want you to feel bad for him, or for us.
I tell you about my him so you’ll know right away I don’t want to talk about nonsense.
I don’t want to know about the practice schedule for baseball or how your kiddo is double booked with a recital and travel basketball.
I want to know who was the favorite child in your family when you were little.
I want to know about your first kiss, and the best book you ever read, and who will remember the way your face looked when you were young.
That’s not the only reason I tell you about Jack. I also tell you because I have this gripping need to share his story. I hope if I tell you all about him, then there will be the tiniest steps toward progress, and change.
For example, perhaps you are in charge of a great big important company.
One day, a young man comes in for an interview. He took the bus to get there. He is dressed casually, and he doesn’t look you directly in the eye when he speaks.
Maybe you’ll sit across the table from this young man, and you’ll think back to a story you once heard about a boy named Jack. You’ll remember the way dress pants made him feel like he was going to tear off own skin, and how badly he wanted to drive a car.
And so you hire this young man, and he goes on to do great things in your big important company–things no one else even considered possible.
Did I ever tell you what it’s like to have a son with autism?
I’m sure I did. It’s not exactly something I keep a secret.
Having a son like Jack is everything you would expect. It is every cliché, every wives’ tale, and every platitude ever spoken.
It’s exhilarating, and surprising, and ordinary, and funny.
Let me give you an example.
A long time ago, before I had kids, I watched a documentary about autism. A young mother sat before the camera and described the way her son clicked his teeth all day. Sometimes she simply could not bear the sound of it, and she whispered, “Shut up shut up,” under her breath.
I was appalled! Imagine! Wishing your own beloved child would shut up—one with special needs, no less!
Fast-forward to me, standing in my own kitchen, muttering shut up shut up under my breath when 14-year old Jack won’t stop murmuring the first seven letters of the alphabet over and over again.
He does this now. The alphabet thing. Did I tell you that?
I whisper shut up to myself because it doesn’t work when I say it out loud. He doesn’t get it. He hesitates for a second, and goes right back to what he was doing.
[Editor’s note: it also doesn’t work if you shriek that he better stop singing that song or you will light your eyelashes on fire.]
Did you know living with autism can be a little like living with fire?
There is the long, slow burn of grief, accompanied by occasional bursts of joy and light. All of this is punctuated by the hot flames of epic meltdowns.
Yet there are moments of calm, and warmth, and hope so powerful, they glow in the most beautiful orange color you’ve ever seen. It’s like sitting inside of a sunset.
I think what bugs me the most is Jack’s disability is somewhat invisible. He doesn’t walk with a limp, or need a hearing aide, or ride in a wheelchair.
Instead, he screams if anyone bumps into him by accident in Chipotle. He wears headphones to block out the fireworks on the Fourth of July. He picks at invisible spots behind his ears until they bleed.
That’s why I have to tell you about it, do you see? So you don’t think he’s weird, or rude.
Of all that autism has handed me, I guess I never expected the sameness of it all—the same conversations over and over again, the same need for routine, the same letters of the alphabet.
STOP. Stop with the alphabet already.
[beat of silence]
Trust me, if it isn’t letters, it’s something else. He’s running the trash compactor at regular intervals, or rolling his meatball between his fingers before he eats it, or jumping around the kitchen at 6:00 am in the morning.
For someone who doesn’t like loud noises and has so very little to say, this child of mine sure does make a lot of racket.
Well, I guess the meatball-rolling thing is quiet, but you know what I mean.
Did I tell you what it’s like to have autism?
Probably not, because I do not know.
I do not know because he cannot tell me.
I want to talk to him. I want to talk to my son.
But I can’t get past the banalities. Some days, it’s like living with a stranger—one who is constantly demanding to see the latest Disney movie, but a stranger nonetheless.
He has no friends.
He doesn’t want friends.
I mean, who doesn’t want friends?
My son, that’s who.
He rejects people. He is critical about kids his own age. He sneers when other boys try to talk to him. Psychology calls this his “armor”—his way of keeping people at arm’s length because he’s so afraid they will reject him, or hurt him.
Did I tell you how I wonder?
I wonder what it’s like to feel invisible.
I wonder if I can give him what is rightfully his.
I wonder what will become of this child of mine once I am gone.
Mostly, I wonder if it’s better to occasionally watch brilliant sparks of orange lighting up the dark sky, or to never feel the sun at all.
I am rooting for him.
Did I tell you that?
I am watching this all unfold from the sidelines of my own life, and I am rooting for him.
The Peace We Make
My name is Carrie.
I have a son with autism. His name is Jack. He is almost fifteen years old. He has blue eyes.
In case you were wondering, he is not a savant. He does not possess some exceptional skill in math. He doesn’t swirl colorful blobs of paint into masterpieces, and he’s not the least bit interested in the piano.
Jack has regular old autism with limited theory of mind and self-stimulating behavior and a tendency to perseverate on random topics or objects. Also, anxiety—lots and lots of anxiety.
In other words, if you tell him you think Coke is better than Pepsi he will corner you and argue how that cannot be the truth until you cover your eyes and cry for mercy.
He rubs his hands together very fast, and hops around the room. This helps him regulate his body.
Also, he is afraid of many, many things. At the moment, this list includes fire drills, bad weather, and being late for anything.
I mean, I guess he could be a savant. I never really investigated too closely. That would require cracking through the looping dialogue about Coke products, and honestly, who has the time for that?
He does have a really good memory, though. If you tell him your birthday and then run into him two years later, he’ll remind you that you were born on July 2nd, 1973.
At the same time, his interests are limited. If it were up to him, he would eat chicken fingers and French fries for every meal. He would watch the first ten minutes of the same Disney movie over and over all day long, and adhere to a very strict schedule of his own making.
I had to hold him down for his flu shot. Did I tell you that? He is over six feet tall and when the nurse came toward him with the needle he started to cry and flail and I had to pin his arms to his sides and whisper in his ear.
Shhhhh, Jack. Just a pinch, just a pinch, you can do it.
He is getting bigger.
This is getting harder.
Because the entire time I am trying to hold his arms and I am sweating and I am annoyed, I am also sad because I know he doesn’t understand that a shot will keep him healthy.
I love him so much. I know the curve of his face better than I know my own.
The double-edged sword is the brother born one year before—Joseph—an equally tall, lanky boy with green eyes who has one foot toward becoming a man.
The gap is widening. In fact, it is glaring. What started as two brothers thirteen months apart has turned into two teenagers who hardly resemble the same species.
I am always thinking about stuff like this. Sometimes I wonder if other autism mama’s brains race the way mine does.
It’s not even always about big things, like independence and medication and predators on the Internet.
I think about whether or not I am speaking too quickly.
Or if I should let him change the radio station when a song comes on I know he doesn’t like because he has told me fifty-nine hundred times he thinks it’s terrible—or if I should make him listen anyway because I like it, and this might teach him some flexibility.
And when I’m not thinking about the way I talk, or the radio, I am trying to stay at least five seconds ahead of him so I can anticipate his next move.
Will he ask the cashier if she’s pregnant?
Will he run behind a car?
Will he swear?
He swears a lot. We’ve been working on this for months. No, that’s not true. We’ve been working on this for years.
For me, autism brings a trifecta of sensations: hope, grief, and peace.
Hope is the bundle of rocks I carry everywhere I go.
Grief is the small box of feathers I let myself open every once in a while.
And peace? Well, that is the long, jagged mountain I climb, clutching a bundle of hope and my box full of feathers.
The thing is, we didn’t decide to have a son with autism. We did not choose this, and yet, almost fifteen years later, here we are.
We are researching group homes for people who can maybe hold a job doing simple tasks like building widgets or keeping the floors clean at the Salvation Army.
He’s not simple. He may not be a savant, but he’s not stupid, either.
I am not wired for this, can you see that? I talk fast. I don’t like chicken fingers. I am not good at research, and I hate hiking.
I want you to know that I never, ever had preconceived notions about what my children might do for a living. I never observed my toddlers stack blocks, and dreamed of them sitting at an architectural table planning skyscrapers.
I never watched them play baseball and considered a life in the stands, dodging fly balls.
I also never imagined they would sweep floors.
What will he do for the rest of his life?
This is the great conundrum, you see–the big mystery.
I mean, he’s certainly smart but he doesn’t think like anyone else I’ve ever met, and he can’t keep his body still long for much longer than five minutes.
What does a person like him do?
How will he fill his hours and his days and his years?
I can’t imagine him baking or cooking for a living because he picks at his face and rubs his eyes too much.
He can’t operate heavy machinery, obviously.
He can’t sort mail at the post office because he would memorize everyone’s address and report loudly at the dinner table about who got a copy of Playboy delivered that month.
Menial work. All signs are pointing in that direction.
Maybe not. Maybe he will surprise me.
Oh, I know! At least he’s doing something! It’s honorable work, sorting clothes at the thrift shop and collecting recycling.
And it’s true. It is honorable work. He’s doing something.
Besides, he doesn’t care, so why should I?
I do, though. I do care.
It stings. That’s all I’m saying. Right now I am on the jagged side of the mountain, and I am holding on for dear life.
In the meantime, I wait. Every afternoon I wait for a white minivan to pull up our driveway.
I wait for the door to open, and a big pair of Nike sneakers to step out onto the pavement.
I wait for the boy with the blue eyes.
And as the sun lowers in the cool sky, I just hope he looks my way even once. I hope he tells me something about his day. I hope he is happy.
Grief, hope, peace.
One day, peace.
How to Be a Heart-Changer
I have been thinking about you lately.
We’ve never met. You live in West Virginia, and I live in New Hampshire.
I have five kids. My second son, Jack, has autism.
Jack told me West Virginia and New Hampshire are exactly five hundred and forty-six miles apart.
He knows stuff like this.
I bet you know a lot of stuff, too. I bet you are really smart and you think about things in ways nobody else does.
I am sorry for what happened to you, when your teachers talked to you so meanly and made you feel unsafe.
A lot of us heard the recording, where they called you names and said you couldn’t have your snack and threatened to hurt you.
I know. I know you had to carry those awful words in your heart and you had no way to tell anyone and I will never understand what was like for you.
Jack likes his snacks. He would be very, very upset if someone said he couldn’t have one. These are his favorites: cheese and crackers, Oreos, marshmallows, and sometimes applesauce.
He also loves soda, but it makes his body restless and twitchy. I tell him this is because of all the caffeine, but he thinks it’s because soda has bubbles.
It could have been him.
That’s what I think about when I hear a story like yours. I make a movie in my mind, and instead of you, I imagine it’s my son. I picture his red back pack hanging in the cubby, and his sweet, open face waiting for his food.
That’s how a mama’s brain works, my sweet child. We hear about something terrible, and right away we think of our own.
Jack’s had all kinds of teachers. Some were strict and some sang silly songs and others let him know if there would be a fire drill that day.
See, Jack hates fire drills. They are too loud for his ears.
His teachers all taught him in their own special way. They all worked very hard to reach him through autism’s unyielding barricade.
When he was in third grade, Jack was mad because he had to wear glasses. His eyes needed help. So his teacher e-mailed all the other teachers—and even the principal—and she asked them to dust off all their glasses because a special kiddo needed them. The next day they all wore their glasses to school. To show him that he belonged.
Eight hours a day. Five days a week. That’s how long you had to spend with your teachers. It’s a long time.
I wish I could have helped you.
I know there are lots of ways to help—petitions and legislature and cameras in the classroom. These are all very good things.
But signatures and laws and videotapes don’t change hearts. They don’t soften prejudice or ease fear or create connections.
My son Jack was diagnosed with autism when he was just eighteen months old. I was a young mother back then. I didn’t know very much.
I’m not so young anymore, but some days it still feels like I don’t know very much.
I lose my patience. I don’t want to mislead you about that. I lose my patience and I yell at him to stop clicking his teeth, or picking at his scalp, or washing his hands.
I love him. I love him so much I cannot breathe for it all.
Thirteen years ago, when I sat with the doctor in his little office and he told me my son has autism, I knew right then and there I was his advocate. From that moment on, I would need to speak on his behalf and research all the services and make sure his needs were met.
And I did. I did all of that for a very long time. I advocated for my son Jack.
But after a while I could tell it was not enough. The words autism spectrum disorder still made people nervous when I spoke it loud. They watched Jack jump and flap and they pointed their eyes down to the ground. They shifted their feet and cleared their throats.
I realized I had to be more than an advocate. I had to be a heart-changer.
A heart-changer doesn’t just ask for more speech therapy, or read articles about gluten-free pretzels, or decide if medication is the right route to take.
A heart-changer stands in front of another person, usually a stranger, and looks inside their mind. We listen carefully to their words, and try to figure out what makes them think.
For one single moment, you have to hold their fear and hesitation and uncertainty in the palm of your hand.
And then, you have to think about your own memories. You have to remember the way your father yelled at you, and the time you saw a breathtaking butterfly soar through the clouds, and how badly you wanted to grow and be a dancer.
Then, you have to connect the dots, like one of those puzzles you see on the menus in a restaurant.
You say, oh, you like butterflies? So do I! They remind me of my son Jack.
There is not a lot of time for the connecting. It might happen in line for the movies, or while you are waiting to pick up a pizza, or when you are buying stamps at the Post Office. You must be quick, and open.
As a heart-changer, you have to be willing to celebrate kindness.
You have to be vulnerable.
You have to believe people are good.
I believe people are good. Can you see this? Because if I don’t, I will not be able to live my life. I will exist only inside a bubble of worry and fear and withholding.
I am so very sorry about what happened to you. It was not right. I want you to know this.
When you lie in your bed at night, and you hear those awful words in your head and feel the pit of fear in your stomach, please remember. You are safe now.
You are here for a reason.
You are here to teach us.
You are here to change us.
And there is an entire community standing straight and tall behind you—mothers and fathers and teachers and therapists and superintendents and neighbors.
All across the nation, we stand with you.
We will speak for you when you can’t find the words.
We will pick you up when you falter.
We will tell our stories, and scrawl our names across forms on clipboards, and do whatever it takes to change hearts.
I know we can do this. For you, we will do this. We will make it right for you.
I hope your new teacher is the best person on the planet.
Because of them, Jack wore his glasses.
Because of them, he could see.
Building a Family
Mama, how do you build a family?
Well, my child,
a family is at once
and the hardest
thing to build.
Think of it as a garden.
Maybe you expected rows and rows of neat tulips,
standing straight and tall in their church pews,
eating organic apples and placing the cores neatly in the trash can.
Instead, you have a field full of wildflowers.
Colorful, shrieking wildflowers
who eat your leftovers with their fingers
and leave gum wrappers all over the house.
It was not supposed to be this way,
you might say to yourself.
It was supposed to be the apples and the prayers,
the quiet and the books and the order.
Some days will be so hard
you can’t believe it.
Play dough in the carpet.
Stomach bug on the carpet.
Glitter all over the carpet.
There’s kind of a lot with carpet, to be honest.
Best to do hardwood floors, if you can.
Other days will be
The problem is,
you never know which one you’re going to get.
When you build a family,
it is your job to figure out how to make the wildflowers stand straight and tall
without dulling their color.
It is your job
to tend to the one
the world doesn’t always understand.
The one who repeats himself incessantly,
and washes his hands obsessively.
A diagnosis forever following him like a post-script.
I am Jack.
P.S. I have autism.
There is no greater pain
than the pain of watching your child
struggle to breathe with croup,
or limp with a broken leg,
or try to piece together the words to make his needs known.
Over time, your saplings
will grow delicate green leaves.
The flowers will open their soft, silky petals,
and turn their heads to the sky.
You will want the very best for each of them,
even when you don’t know what the very best is.
So you wrap gifts at Christmas,
and cook their favorite meals.
And while you are wrapping and cooking,
you are worrying.
When you build a family,
the worry is a continuous vibration
beneath your ribcage.
Is she ready for a sleepover?
When should I get them a phone?
Who will take care of him when I’m gone?
Building a family can be demanding,
I don’t want to mislead you about that.
It can be exhausting.
It is original, yet ordinary.
It is a collection of small, commonplace acts.
A band-aid across a scraped knee.
A simple dinner of pork chops and potatoes.
A hug at the end of a long day.
And memories so imprinted and timeworn and fleeting,
It’s almost as though they never happened at all.
Shiny metal keys in the door.
Cool lips against a fevered forehead.
Candles lit atop a frosted cake.
Make a wish!
My dear child,
a family is
and fervent kisses
once the kids are in bed.
It is raw.
Building a family means falling love
with tiny baby ears shaped like seashells,
and soft newborn sighs.
It is holding your breath
and cutting tender pink fingernails.
Holding your breath,
and letting go of the back of the bike
as she sails down the hill.
Holding your breath,
the first time he puts the car in drive
and sails down the driveway.
It is a lot of holding your breath.
Best to get a flat driveway, if you can.
When you build a family with another person,
it can be hard.
It can feel like a road paved with
broken promises, and misunderstandings.
Then there is forgiveness.
There is hope.
And at the end of the season,
you stand in the waning light,
and look over your garden.
Maybe your knees creak, from all the times
you spent tying shoelaces.
Maybe your back aches, from all the times
you bent to wipe tears from a sad face.
Maybe your throat is hoarse, from all the times
you gave him a voice.
The sun is low.
The babies are too big too hold.
The saplings have grown to tall oak trees,
and your wildflowers have blossomed with color and light.
As the sky turns orange and gold,
you wish a quiet wish.
You hope out of all the things you taught them—
to throw away their wrappers, and eat more fruit.
To put the parking brake on,
and sit quietly in prayer.
You hope they remember the most important thing there is to remember
in this life we hold so dear.
Always tend to the tender things.
My Tell-Tale Heart
[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.
Individualized Education Plan.
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.
More Than Autism
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.
Swimming in the Rain
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.
A Mother’s Mantra
Today, I will be here.
I will be here in this house with my kids and my dog and my son with special-needs and my husband who has dark, wavy hair.
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 didn’t ask for a brain that insists on schedule, or a body that needs to jump.
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.
When I Die
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.
I am a mother of a son who has autism—a son who depends on me to regulate his own nervous system and talk to the doctor about his anti-anxiety medication and advocate for his academic needs.
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.