I never wanted to be The Person.
You know, The Person—the one in a marriage who handles all the kid stuff, like changing the diapers and checking the homework folder and buying shoes.
(The Person is also known as the Default Parent, The Micromanager, or the Helicopter Mom.)
I did pretty well for the first year I was a mother. Our oldest son Joey was born and, for the most part, my husband Joe and I handled the responsibility of taking care of a new baby fairly equally.
I didn’t care how he swaddled him, or what he which outfit he chose, or whether he used the blue pacifier with the duck on it or the green one with the frog when he fussed.
We exchanged uneasy glances on the couch late at night while we took turns rocking and soothing and walking our angry, mysterious baby.
Then he was diagnosed with autism. And things changed.
We didn’t sit together on the couch as much. We didn’t exchange the glances, and we didn’t take turns soothing. I think this was because, overnight, I became The Person.
After the diagnosis, I was the only person who could feed Jack his mashed bananas that he spit right back out or could rock him to sleep so he would wake up twenty minutes later screaming or could get him to look at me if he wanted juice.
I threw myself headfirst into specialists. I read articles. I researched therapy. I was frantic, and yet I thought I was the only one who understood him.
There I sat, on my island of invented expertise, like a carping queen in her ivory castle.
And of course, I took Jack right along with me. We looked around, and we looked at each other. We looked across wide, deep spectrum moat that separated us and we saw all the other people out there, having fun and laughing and sitting in the sun.
This was not good; for me, for Jack, or for my marriage.
See, when you are the only one who can do everything and you do it perfectly and you sneer and roll your eyes when someone else tries to step in and help, then you will wind up doing every single thing yourself. And this will make you mad. A little sad too, but mostly mad.
Because, if you are anything like me, you will blame your husband since clearly, he is very lazy. He is maybe even a little bit stupid because he doesn’t understand that the special diaper cream must go on every time this little hiney gets changed and if the bananas have any lumps then it won’t work. And the green bowl is really best because the bottom is flatter.
So you blame and blame and maybe you feel resentful. Resent is like a tiny seed that plants itself in your heart and your mind. Except instead of blossoming into a beautiful, silky flower, it grows into an ugly weed when all you really need is colorful petals.
This was me.
I bought the special diaper cream because I obviously cared about our son the most.
I mashed the bananas in the green bowl.
I sneered. I rolled my eyes.
And then we almost got divorced.
I am not even kidding about this a little bit.
Back then, I thought it all mattered so much. I thought that if I didn’t do everything exactly right then Jack wouldn’t outgrow his autism and our life would be miserable. That’s what the voices in my head told me, anyway.
Well, we were pretty miserable, but it wasn’t because of his autism. It was because I was trying to control my life’s unfamiliar landscape through ridiculous details like diaper cream and baby food.
It was because Joe’s opinion ceased to matter.
It was because I was alone and angry and sad on my island, and I didn’t even know how I got there.
Jack is thirteen now. I am forty-two. I have been living with his quirks and his anxiety and his autism for nearly a third of my life. I understand the island a little more every day.
People like me, we use smugness and sneering and bananas to protect a small inner light. This light, it flickers like a tiny candle on a windy day.
The wind is trying to control our vulnerability and stamp it out and make it disappear because vulnerability is so scary and it makes us feel weak and cold and alone. It makes us feel defenseless.
So we build a wobbly fortress around our candle out of sticks and stones and green plastic bowls. We have to hide it from the wind, and the world, and maybe even ourselves.
With my marriage crumbling before me, one stick at a time, I dismantled my fortress and I tried to weed out the resentment.
Thirteen years later, here in front of me is this man and next to me is this boy and they love each other a lot and their love is different from mine and I have learned that is very, very okay.
The thing is, Joe is much better at so many things than I am when it comes to this unusual boy of ours.
He always shows him the receipt when they go grocery shopping so Jack can see that apples were on sale but the grapes were more expensive than usual.
And when Jack is tired, or he has a headache, it is his father he seeks. He stretches his long body on top of Joe’s, and closes his eyes.
He is the gain to my loss—the ultimate balance sheet of marriage and parenting.
I can’t lie. Every now and again the old voice in my head starts to whisper, and I fight the urge to become The Person again. I read the latest research on autism and begin to panic, or I worry Joe won’t remember to give Jack his medicine when I’m out with my book club and maybe I should write down a little reminder,
He always remembers.
Do me a favor. Take a moment today, and look in the mirror. Look yourself right in right in the eye. Are you The Person? Are you standing in the way of a loving, messy, unpredictable relationship because you have marooned yourself on an ivory island?
Don’t stand in the way, that’s what I want to tell you. Don’t block the light from him, or her, or the world. Come out from beneath your pile of sticks, and take a deep breath.
The wind will stop blowing, I promise. You will stand straight and tall and honest in the still, tranquil air and nothing bad will happen to any of you. It is in the quiet space of light where life is lived best.
And remember, it’s never about the bananas.
I’m really scared about what’s going to happen to him.
I know. Me too.
It’s May now. The days are longer and warmer, and the air feels soft. Summer is so close, it’s as though we can reach out our fingers and touch it.
Your backpacks are probably all worn out and have a bunch of stuff rolling around in the bottom—elastic bands and fidget spinners and old worksheets you forgot to hand in to the teacher.
All of my kids are excited for summer, especially Jack.
You remember my son Jack, don’t you? He was in your class last year, for sixth grade. He had autism.
He still has autism, but he doesn’t go to your school anymore. Now he goes to a school in the town next to us.
I want you to know there are very good reasons why he changed schools, but it wasn’t because the teachers weren’t doing their jobs right, or because kids were mean to him, or because he wanted to leave.
He did not want to leave.
He left because last spring, when fidget spinners weren’t even a thing yet, he became very, very frustrated. He became aggressive, and unpredictable, and difficult to control. I’m sure you remember all the times you had to leave the classroom because he was throwing stuff on the floor and yelling loudly.
It was because in sixth grade, he did not understand why Pippi Longstocking might be very sad when her father died in a shipwreck, or how to divide three cookies between two children who were having a snack together.
The thing is, Jack’s brain is different. I mean, it has the same parts we do–the cerebrum and the cerebellum and all of that–but it doesn’t quite work the same way yours and mine does.
For instance, let’s say someone tells Jack that his money is burning a hole in his pocket. The part of the brain responsible for interpreting language will hiccup a little as it tries to put the words burning and pocket together in a way that makes sense.
Then the place in his mind that handles something called cognitive flexibility, or the ability to switch your thinking between various concepts and ideas, will seize up like an engine without enough oil. See, his way of thinking is too rigid to understand that money doesn’t burn holes–it’s just an expression that really means he likes to buy things.
He might start to get agitated, and pace the room, and maybe even scream, because the part of his brain that manages fear and anxiety is a bit off, and when he hears about something burning a hole in his pocket he’ll right away think about a fire in his pants and he will get scared, because he’s scared of fire.
I bet your mom or dad helped you with your homework a lot this year. Maybe they sat with you at the kitchen table or the small desk in your room, and as the late afternoon sun turned to a purple-y dusk, you bent over the papers and read the directions out loud. They reminded you to borrow the one and subtract the two, and quizzed you on your spelling words.
I didn’t always do that for Jack when he was in sixth grade. Whenever I tried to take his homework out of the blue folder he decorated with smiley stickers, he would scream and hit his head with his hands and run circles around the room like a lot of bees were chasing him.
So I did the only thing I could think of to do. I put the homework back in the folder and I tried to forget about it. I hugged my boy Jack even though he does not like hugs and I tried to make him feel calm again. I tried to quiet the bees.
For this, I failed him.
This is the exact thing I thought to myself last fall, when I had to peel him off of the front porch on the first day of his new school. He was crying the kind of cry that makes no noise. He just had tears sliding down his face. I held his hand down our long driveway and convinced him to get into the minivan that for him, had replaced the long yellow bus.
As we walked together, he put his head on my shoulder and he squeezed his eyes shut tightly.
He did not want to go. He did not want to leave your school with your cafeteria and noisy hallways and loud, clanging lockers.
There are no lockers in his new school.
I failed him.
Do you know what failure feels like? It feels like a scratchy coat in the middle of July. It is hot. It is uncomfortable. You hate it, but at the same time you pull it close to your body and button it up tight because it reminds you of who you are—of all the things you did and didn’t do when you had the chance.
All last fall, as the leaves turned orange and gold and crunched beneath our sneakers, Jack was devastated. He was frantic. He was sad. But as winter’s new snow covered the landscape like smooth, white paint on an empty canvas, he began to settle.
And his new school, well, it’s fantastic. It’s full of amazing, kind people who know a lot about autism. It’s very, very small with only ten kids in the whole middle school so the teachers have a lot of extra time to listen, and watch, and figure out the way his brain really works.
And when he gets very, very mad, they have strategies to make him calm again so he doesn’t hurt anyone else—so he doesn’t hurt himself. They know about the bees.
At last, he has room to spread his wings—to fly and to fail and to soar yet again. Slowly, he is learning.
Yet still, he wants to come back. Almost every day, he asks if he can go back to your school and be with all of you. He checks his big brother Joey’s backpack for the lunch menu and he sits at the counter and studies it carefully.
Joey. For you. Have tacos on Thursday.
No matter how many times you wave to him at the baseball field or come up to him in church and say hello, somewhere deep down inside of his heart, he feels forgotten. He feels lost.
He still misses you. He misses your games at recess even though he never understood them and he misses sliding his lunch tray through the line and picking out his milk.
The thing is, we need people like Jack. This may be hard for you to understand right now, but we do. People like my son—whose brains have all the same parts and yet think very different thoughts—well, they add something special, and important to our world. They take the white paint, and they make it colorful.
They should just make. More cookies.
I guess what I am trying to say is that even though his brain is different from ours, it is not broken. He is not broken.
I hope that next year, when you look around realize he is still gone, you’ll think of him. You’ll remember him. And you will smile.
Have a wonderful summer.
Lately I’ve been taking a few minutes after my son Jack has a meltdown to sit and talk with him. I want to know more about what it felt like, what set him off, and how maybe next time we can do things differently. Now that he’s thirteen, he can answer me a little better.
Then I tell him what it was like for me, as his mother. He doesn’t always listen or understand, but I feel like it is somehow important for him to hear me.
After we talk I sit at my computer, and I try to weave both of our experiences together like the silky yarn of a tapestry. I hope that one day I may look back, and understand the entire picture.
My name is Jack.
I have autism.
To me this means I know exactly how many minutes every Disney movie is and I don’t sleep as much at night and I look down at my feet instead of into your eyes.
When I have an idea in my brain it is big and huge and I cannot think of one other single thing. It feels there is a big elephant who has been squashed into a tiny elevator. The other ideas and thoughts get pushed into the corners until I can’t see them anymore.
When the doctor talks about my autism, he doesn’t say anything about the Disney movies or the elephant. Instead, he says words that buzz in the back of his throat all quiet-like. Then the words turn into a bunch of bees and they explode out of his mouth and into the room, their stingers all sharp and pointy and ready for stinging me.
Last night we had to go to something called opening ceremony for baseball because my brothers and my sister play on teams. My father is the coach.
I have never played baseball.
I have never been on a team.
My father has never been my coach.
This ceremony was at the baseball field in the middle of our town and my mother said we only had to go for a little while and then we would go to Dairy Queen after so I could get the blizzard of the month, which is vanilla with pieces of cookies and brownies. I talked about this a lot of times. I was excited and I felt happiness.
But when we walked out of the car and down the sidewalk and onto the field, there were lots and lots of people. Some had on shirts that were bright green or red or yellow and it hurted my eyes with the color.
A man was talking loudly and fastly into a microphone and I couldn’t figure out his words.
Bugs kept flying all around my face and one landed on my forehead. I tried so hard to hold it all on my inside but I could not take the colors or the microphone or the bugs for one more second. I stared to scream. I started to run and jump.
All around me the people blurred together in my eyes like someone had smudged them with a paintbrush. But when they saw the madness on my face, one by one they stepped towards my mother with their arms out wide.
Would he like to sit in the dugout, where it’s quiet?
Maybe he needs some water?
I don’t blame him, it’s very crowded tonight.
I have autism and sometimes it is very sneaky and it hides and maybe you wouldn’t know it when you walk by me because I can look like a regular boy. But the people in my town, they know it.
They know because they see me in Walgreens when I get very upset if they don’t have the gum I like and I shout where is my gum and the lady who works there says buddy, we’ll get it for you next time, I promise.
They know because they see me at the grocery store when I jump down every aisle and I try to touch all of the lemons so I can feel their bumpy weird skin on the tips of my fingers.
They know because they see me at the pool when it takes me a very long time to decide if I want to jump off the diving board and the line piles up behind me with kids and the lifeguards ask them nice-like to wait for me.
Be patient, guys. Jack needs some time.
The people in my town see me. They know me.
A town is where you live. It is mostly buildings and roads and houses. In our town we have three churches and two pizza places and even a small park.
But a town is more than buildings. It is arms stretched open wide and faces lifting up into happy smiles and a cool drink of water on a hot, buggy baseball night. It is lots of claps after I make a cannonball with my arms and legs curled tight like a turtle.
In our town, my mother knows that even if others have not walked the same dusty trail into the cool darkness of the dugout, they appreciate the path she takes.
She knows there is an invisible circle around the buildings and the churches and the pizza places and inside of the circle, no one will hurt her boy named Jack.
No one will hurt me. They see me. They know me. They like me.
Even if I am different because I have my autism, I can still belong.
Finally my mother she caught up to me behind the metal bleachers that are so cold and hard they bite into your legs if you are wearing shorts. She took my hand in hers, and she rubbed my back. We walked together away from the color, and the noise, and the bugs.
We stood in the way back, in what they call the outfield. The kids and the grown-ups and the microphone were far away, like little ants. I could see my father standing in his blue jacket. He turned to me and he waved and I felt better.
Because maybe he will never be my coach on a team and wave me towards home plate, but he will always and forever and ever be my dad. This makes me glad.
If you live in a town with someone like me, someone who has autism and who is jumping and screaming and swatting at the bugs, be patient.
I am trying.
The blizzard was good with the cookie pieces. Mine melted a little on the way home. That was for me okay.
The other day, when we were on our way to the grocery store, you asked me a question.
Whenever you ask a question, it doesn’t sound like a question. It sounds like an announcement because you don’t lilt your voice at the end or change your tone at all.
How do. Grown-ups have it. The autism.
I was a little taken aback. I mean, we were sitting in the car and just two seconds before we had been debating whether chocolate cake is better than strawberry.
I told you the obvious answer is strawberry, remember? It’s true. Everyone knows this. I told you the Queen of England and Nicki Minaj and even the Pope himself like strawberry better than chocolate, so it is, indeed, a fact.
I was trying to wind you up a little and to make you laugh. See, you don’t laugh a whole lot. You hadn’t smiled in days.
Anyway, we were talking about different flavors of cake and I thought it was a nice little back-and-forth conversation—which doesn’t happen all that often with you—and just like that, you changed topics on me. You got all serious.
Will I. To Drive.
When you were first diagnosed, I was actually happy. Can you believe that? I was happy when the doctor looked down at you, toddling around the exam room, and said quietly, “Mrs. Cariello, I believe he has autism.”
See, I was happy to have a reason for all the stuff you did and didn’t do. I could explain why you took the vacuum cleaner apart all day long and clapped your hands over your ears and screamed if you heard a dog barking. Finally, I could tell all the other parents at birthday parties and play dates that you aren’t just weird or quirky or strange, no, you had a diagnosis.
Oh, Jack? Well, he has autism. That’s why he doesn’t answer you when you call his name.
For me, the doctor’s words were an umbrella in the midst of a storm. I was more than glad to stand beneath it, and take shelter from the rain.
For months afterward I’d lie awake at night and imagine what you’d be like in kindergarten. Shy, maybe—on the quiet side because your speech would probably still be a little delayed. You’d be taller than the other kids, with a backpack over your shoulder.
I pictured you in third grade, sitting on the bus next to your older brother Joey. Maybe you’d wave to me through the window.
I thought about fifth grade, and your years as an awkward, gangly teenager.
I was scared, you see. I didn’t know what the future held for my quiet, mysterious toddler, so I went ahead and invented my own.
I guess you could say I pictured you recovered—shedding your autism like a springtime caterpillar in your cozy cocoon, all at once turning into summer’s bright, incandescent butterfly.
I did not picture you as an adult. I never got that far.
We have a long road ahead of us. Next month, you will be thirteen; a teenager, and you are almost none of the things I first imagined you would be.
You are not shy.
Your speech is not just a little delayed.
You have never once waved to me through a window.
You have not recovered. If anything, your autism cocoon is tighter—more snug—than ever.
Do they for. Get the married.
It’s like the two of us are standing in the lobby of a very tall building. We are waiting for the elevator, craning our necks and looking up at all of the floors. Each one is labeled with the usual stops for the average person who does not have a diagnosis.
And the hardest part is, Jack-a-boo, you may not visit every floor. The spectrum elevator just might whiz on by some of the stops altogether, while others may take longer for you.
When I picture you as an adult, the reality of your diagnosis hits me like a ton of bricks.
Every day, someone will find you annoying, or weird.
Every day, someone will think you are dumb.
Every day, you will be misunderstood.
Every day, you will feel as though you don’t belong.
You know how April is Autism Awareness Month? We call it that because it’s the time of year dedicated to raising awareness about Autism Spectrum Disorder.
This means it’s our chance tell the whole entire world that yes, autism can be hard, and scary, and mysterious, but sometimes it can be pretty cool too.
I don’t know when it started exactly, but now lots of families put blue lights on their houses and wear special t-shirts with ribbons on them, the ones that look like they’re made out of puzzle pieces.
We’ve never changed the lights on our house to blue. We don’t have any t-shirts. In fact, we’ve never done anything at all to celebrate Autism Awareness Month. I don’t know why. I think one year I looked around for a blue light bulb but I couldn’t find one so I just gave up and forgot about it.
Will for me. To be a father. Like Dad.
The thing is, I spend three-hundred and sixty-five days a year, seven days a week, explaining autism to the world around us.
Oh, Jack? He has autism. You just have to give him a little extra time to answer you.
Jack? Yes, he’s making great progress, thank you.
My son Jack? He does have trouble sleeping, but we’re working on it.
When I’m not explaining the particulars of the spectrum disorder—the rigidity and the anxiety and the medication and all of that—I’m telling people how we feel about it.
He and my daughter love to bake together.
It was a tough summer but he’s finally settling down.
Puberty? Please, don’t even get me started.
In fact, I spend so much time spreading awareness around, that I forgot about you; my eternal child, my tentative boy, my hopeful son.
Where for. Will I work. For a job.
I forgot to tell you all the things I think every time look into your earnest face. Let me tell you now, as the April’s trees grow their slow green buds and the ground thaws beneath our feet.
You aren’t dumb.
You aren’t weird.
You are everything I never dreamed you could be.
When the world feels cold, and cruel, and unforgiving and life’s elevator has ground to a frustrating halt, please remember that behind you stands a family.
You belong here. You belong to us.
Happy Autism Awareness Month, my sweet Jack-a-boo.
Editor’s note: I wrote this post after talking with Jack about what holiday parties are like for him. He read it over, and reminded me the cookies were shaped like snowmen. I thought they were reindeer.
My mom told me we are going to your house on Saturday. For a holiday party.
The last time I was at your house was December 18, 2010. I remember you had cookies shaped like snowmen with chocolate chips for the eyes. I ate three of them.
I was five years old. I had autism.
Now I am twelve. I still have autism.
Last week my mom took me to see a doctor. It takes us usually forty-two minutes to drive there and we always stop for lunch at the same restaurant on the way home. It’s called the Common Place Café and it is really small and has wooden tables that are shiny. I order the cheeseburger and it is very good.
I like this doctor a lot. She is called a Developmental Pediatrician and the first time we went to see her was April 14th, 2011. It was a Thursday. I was in first grade and I was having lots and lots of fears about the weather and food that was orange and going to sleep at night in my bed.
She said I had something called anxiety. I call it my fear.
This time the doctor and my mom talked a lot in the small office. Their voices were quiet almost like whispers but not exactly.
Better he’s sleeping more almost all night.
After one hour and four minutes, the doctor closed her folder and said to my mother, “Remember, this time of year is hard for kids like Jack. The holidays feel very chaotic to him. People will think you are controlling and rigid, but try to keep him on his schedule.”
I like my schedule. It makes me feel safe and cozy and warm like I am wearing a big, soft blanket.
I like to go to bed at 8:30.
I like to wake up at 6:00.
Then I take my bath. This takes me nineteen minutes and afterwards I put on my clothes and eat my waffles.
I like parties. I like to try the cookies and look inside people’s houses and especially to open presents.
But at the very same exact time, parties are scary-hard-unusual-different-every-time for me.
Firstly, I don’t like to wear itchy clothes like red sweaters or khaki pants with buttons. With the pants I always have a fear that I won’t get them to be unbuttoned in time for the bathroom. That would be for me embarrassing.
And people like to hug every minute. I do not like to hug people all the way. I don’t mind a hug with one of my arms but both arms is too much closeness and touching for me.
Then there is the loudness, with everyone talking all together and laughing big laughs and putting clanging pans into the oven. It echoes in my ears and repeats over and over in my brain. I have to sift through the sounds the way a small boy or girl sifts through the sand on the beach to find the prettiest seashells.
Sometimes, even though I don’t want to, I get very, very mad.
My mom says it’s kind of like an orchestra. The tag on my shirt scratches my neck a little bit, and then a man standing too close to me is eating a cracker piled high up with crab dip and it smells very strongly in my nose. The flutes begin to softly hum their notes, and I start to bite my cuticles.
I rub my fingers down my nose.
The clarinets join the flutes. The saxophones begin their music, and the trumpets make their trumpet-y sounds.
I jump higher.
I spin in circles.
I pull at the hair right above my ear.
These are the signs that my madness is coming.
My mom does not relax at parties. Sure, she may look calm and happy, talking and laughing with her plate that has a lot of shrimp on it.
She just loves shrimp and she always eats it with red spicy sauce.
But do not be fooled by her. While she is talking and laughing and dipping her shrimp into the sauce, she is watching and looking all the time. She stands alert, like a soldier on the edge of a battlefield.
She is watching to see if I snuck out the front door quiet-like to look at the Jeep Cherokee parked in the driveway.
She is keeping an eye on the staircase to make sure I don’t wander upstairs and go through the medicine cabinets.
She is checking the buffet table so she can catch me before I use my finger to poke holes in all the soft, squishy dinner rolls that are piled in a basket.
At the very exact same time she’s watching, she’s listening.
She’s listening for the steady rhythm of the flutes, the hum of the saxophones, and the loud, brassy trumpets.
She knows, you see. She knows if we get to the drums we are too late for catching the madness. Once the cymbals make their big loud shiny crash it is too late for me I am there I am screaming I am mad I am alone I am alone I am done.
The room is too hot and my clothes are too itchy and the food smells like it is all mixed together and people are staring at me and I don’t know what to do.
It’s not what I want. I hope you know that. I don’t want to get mad. I don’t want to ruin your party. When this happens there is a place deep inside me—a place no one else can see or know or touch—where I feel embarrassed and ashamed. A small dark awful small place where I hate myself.
I am all the time trying.
I say this a lot. I say it when my mother tells me I have to keep my body calm or she asks me to wear the soft shirt with the red and white stripes she bought specially at the store that she says is festive.
I am all the time trying.
People like to tell my mother and father things that on the outside sound like nice frosting-on-a-cake ideas. But when you listen hard, they don’t sound like sweetness and sugar. They sound like sour judgement.
How about gluten-free?
You know, I hear of great treatments for kids like him out somewhere out in Colorado.
Come on, just relax! It’s the holidays, let him touch the rolls if he wants.
The thing is, my mom and dad, they know all about the gluten-free and the treatments in Colorado.
And when it comes to autism, they know there is no holiday. There is no Christmas-Hanukkah-carve-a-turkey-relax-day. It is 356 days a year of progress and hope, disappointment and fear.
This Saturday I promise I will do my best to not get mad.
It helps if I have a quiet place to go when the music in my head is too loud. It doesn’t have to be anywhere fancy—a small bedroom that no one ever uses, or even a room where you keep all of your sewing stuff is good too.
And if you are nice and you give me a present, try not to get too sad or maybe a little mad if I don’t seem so excited. I love presents. I really do. On the inside I am jumping up and down and my heart is skipping like it has a jump rope. But it’s hard for me to get my outsides to match my insides.
Follow my mother. Watch carefully as she sets her plate down and walks to me and takes my both of hands in hers. Listen to her words.
Shhhh, Jack. It’s okay. Let’s calm down, I’m here now.
Watch my father as he puts his strong hands on my shoulders and turns me around until I am facing him.
Come on, buddy, let’s take a walk.
See, my mother and my father know what’s best for me. They know autism is little more than a delicate ballet, full of forward movement and backward retreat. They know how hard I am trying to march to everyone else’s tune, even when it’s easier to dance to my own beat.
Don’t do the judgement.
I think what I would like the very most at the party this Saturday is for you to talk to me. Try to get to know me. I am interesting. I am funny. I am smart. I love Disney and I bake cakes a lot and this year I wrote a letter to Santa and asked him for a selfie stick.
I am here.
I am waiting.
I am all the time trying.
Autism has never been a secret in our house–it is something we talk about regularly with the kids. We talk about Jack’s various symptoms, how old he was when he got his diagnosis, and what his future may or may not look like.
Yet we rarely touch on the topic of what it feels like to have a brother with autism, and all the ways it makes their lives harder or more complicated. So this week, when 10-year Charlie asked if he could write something for my blog, I jumped at the chance to see what he had to say.
I asked him a few questions to get him started, but aside from a few grammatical changes, the words are all his.
My name is Charlie. I have three brothers and one sister. My brother Jack has autism.
Having a brother with autism is no different than having a normal brother. Well, besides the fact that he might act a little different. Jack is your average 7th grader except he learns differently. He goes to a school that just helps him learn from a different view point. And there is absolutely nothing I mean nothing wrong with that! He may learn a little differently but that’s OK.
On the first day of his school it was sad because he didn’t want to go. He laid down on the front porch and cried. I hated seeing him like that but then he got up and walked down the driveway. I think he was very brave.
The thing to remember is Jack won’t hurt you even when he gets very mad. And if he scares you by throwing a fit he really doesn’t mean to. He sometimes repeats things over and over again and even I get annoyed with it but I just have to remind myself that’s just the way his brain works. He also jumps around all the time. We call that his zoomies.
Going places with Jack can be fun for the most part. When he doesn’t get his way however, the tables turn. Like when we go out for dinner and the server forgets French fries for jack’s meal he will either yell “Where are my F****** French fries!”
When we go to Disney or something Jack’s on what I like to call his good side. He’s not throwing fits and everyone’s in a good mood and to me he’s just like my friend coming to an amusement park with me for a fun day.
Sometimes I wonder if he will be able to have kids. It’s hard to imagine what it would be like with Jack as a father.
My brother Joey wonders if he’ll be able to drive a car because of the jumping. I don’t think that will be a problem. He will control it.
One thing Jack and I have the same is we worry a lot. We both have a hard time sleeping. He sleeps in the bunk bed under me and I can hear him in the middle of the night. He rolls over and rocks until he falls back asleep.
My mother always tells us that everyone has a piece of autism in them. She says autism is like a jelly bean jar and we each have some of the candy. My jellybean is my worry. In my head I picture it the color red.
Our family has started a new tradition we like to call “Adventure Sunday.” Most of these turn out to be very fun like hiking in the woods, going to see a show, and much more.
My personal favorite was when we went tubing down a river called the Saco River because it was slow and we were all hooked together in a circle with our cooler tube free floating in the center. But the good part is it was just us as a family telling jokes and laughing and smiling. We stopped for lunch on a small bank in the shade. We ate sandwiches for about ten minutes and then floated down the river for about 100 more feet until we reached the rope-swing that swung us into the water. I loved it and so did Jack but it would take him a while to jump. He would stand there and walk to the rope and back up again and again because it made him nervous.
There were lots of people standing in the water watching and they started to get a little mad. They shouted stuff like “Just go already!” and “You are holding up the line!” That made me mad. And sad for him.
Mostly I felt embarrassed for those adults. They were setting a bad example. They should know to be nicer to a kid like him, and not only to a kid like him but to anyone. He was trying so hard.
After about tries he finally jumped. I felt so happy for him that I jumped up and down and clapped. I know it took all of his courage especially with people yelling that way.
If you have a brother with autism I want to tell you it will be OK. You just have to make sure other people don’t make fun of him and you have to love him for the way he is because he will always be your brother and he’s important.
I have something to tell you. Come a little closer, because it’s kind of a secret.
Before this year’s election, I had never voted before in my life. Not even once.
I know, that is a terrible thing admit. I mean, in college I studied something called political science and I actually have a graduate degree in another thing called public policy and I have always believed in our country and the meaning of the democratic process. Yet still, I never voted.
Let me tell you why.
When I was a little kid, I went with my mom and dad so they could vote. It was 1980, and I was six years old. Together, we all walked down the small hill to the Legion Hall at the end of our street—a big, white square building that squatted on the corner next to one of the only stop lights in our little town. We passed all the familiar houses—the Everett’s who put up the sleigh with a plastic Santa every year, the Malone’s with their rusty pick-up truck parked out front, the Hanson’s who only gave out pencils for Halloween.
My father’s outline so tall against the dusky evening sky. Maybe I held my mother’s hand, I’m not sure.
Once we got there, we had to stand in a pretty long line. I remember feeling fidgety, restless. My older brother John stood very still. I’m not sure where my little sister Sarah was. My mother was probably holding her.
When we reached the table, the woman sitting in a folding chair looked through a bunch of papers very carefully. Then she looked at my mother and my tall father and told them no, she was very sorry, but they could not vote. There were no forms for them in her folder.
Silently, we all walked up the hill—past the red truck and the Everett’s house to our own.
Reagan and the incumbent Carter. I have no idea who my parents were planning to vote for, but Reagan won the election that year.
This year, for the first time in my life, I felt compelled to vote. This was for a couple of reasons.
First, I voted because Monica Lewinsky is someone’s daughter, just like you are my daughter.
You are just about the most specialist, interesting person I know. And I am doing my very best to make sure you value yourself and never confuse love and power and can one day navigate tricky situations.
Yet, still, one day when you’re twenty-two years old you might be an intern at some big important place and work for a man who is also big and important. And this man might ask you to do things with him that normally you wouldn’t agree to do.
See, no one ever talks much about Monica, and the way newspapers and magazines tore into her young life the way a kid tears into a candy bar on Halloween, hoping for the sweetest taste of a forbidden morsel.
That’s not the only reason I voted. I also voted because of your brother, Jack.
I voted because he has autism and an IEP and I wanted someone in the White House who would not mock the way he flaps his hands or mixes up his words.
I voted for all of you—all five of my children who will one day inherit our country.
The first thing ever I noticed about your father was his voice, did you know that? I hadn’t seen his face yet, because he was working behind the sauté line at Pizzeria Uno’s and I was waiting for the chicken fajitas I needed for a big table with four kids.
“They’ll just be a minute, hang on.”
His voice, well, it captivated me. It was so smooth, so different from anyone I’ve ever heard on campus or in the dorms or at the restaurant when I took orders for pepperoni pizza and chicken fingers.
This is a bit of a cliché, but I can honestly tell you that I loved him from the first moment I met him. I loved his smile, and his chocolate brown eyes, and the way he held his hand in mine when we walked to class.
I loved his voice.
This does not mean we agree on everything. No siree, we certainly do not. We have been married for eighteen years and we still don’t see eye to eye on a lot.
Breakfast for dinner, that’s one thing.
How often the sponge in the kitchen sink should be changed, whether Rocky is better than The Godfather, if praying at home is the same as praying in church.
We do not agree on politics. Over the past year or so, I know you and your four brothers heard us arguing. I know it upset you all, and I am sorry about that. There was something about this election that was so divisive—so polarizing and inflammatory and provocative—that we could not help but be drawn into the argument.
He is loyal to the party, while my patriotism is more fluid.
He owns real estate and two dental practices. He carefully considers matters like the economy and national debt and healthcare. He admired transparency in a world of lifetime politicians.
I vote with my heart, on topics such as planning parenthood and women’s rights and education, and I admired absolutely no one in this entire campaign.
The morning after the election, we tried to give each other space. We stepped lightly around victory and loss, donkey and elephant.
But by the late evening, we were annoyed. We could not help the other see our own side. There was a spring in his step that irritated me, and I’m pretty sure the sight of me moping around in sweatpants and the same fleece top I’d worn to the bus stop that morning annoyed him.
Just as I was pouring milk for dinner, we erupted.
“I don’t care about the media anymore!”
“I can’t even believe you voted for Gary Johnson! That’s like not even voting at all.”
“I made my point.”
“What point? What point was that?”
Round and round we went, like children riding a carousel at an empty amusement park. In the midst of desolate terrain, we struggled to build some common ground.
See, a voice is a powerful thing, Rose.
It can divide, it can heal, it can make you fall in love.
It can change the world.
November 8th was beautiful and sunny and warm. The New Hampshire leaves glowed against the sky’s blue backdrop like a painting. Around 10:00 am I found you reading in your room and suggested we go vote.
“But why, mom? Won’t the lines be long?”
We walked up to the desk. The woman sitting behind it wore a pin shaped like the American flag on her dark blue cardigan. I held my breath while she looked through the papers on her clipboard. At last she found my name.
“Yes! You’re all set. Here’s your ballot.”
I walked toward one of the desks with the dividers and I picked up one of the pencils and I filled in bubbles down the sheet.
You helped me feed the long sheet of paper into the machine, and as we left the auditorium a man in a denim jacket handed us a sticker. You asked if you could wear, it, and after you stuck it to your shirt you looked up at me and smiled.
“That was fun! I can’t wait to vote one day.”
And that, my sweet pink earnest daughter, was my point.
I imagine that, as a teacher, you come across all kinds of learners.
There are the eager beavers—the kids who just soak up everything around them and can’t wait to dive into their workbooks and always keep their pencils nice and sharp.
Then there are the kids who are very smart but also very lazy; who do well on tests but rarely finish their homework.
You have your visual learners, and the ones who need to mix the paper mache with their very own hands before they fully understand the way the water and the paste combine, and others who get everything they need from their textbooks.
My son, well, he is none of these.
Or maybe he’s all of these.
I don’t really know. It’s hard to tell how he learns.
In the beginning of the school year, I like to write a note to each of my kids’ teachers and introduce myself and my child and our family.
My name is Carrie. I am Jack’s mom.
Jack is twelve. He has autism.
By now you’ve probably seen all of his paperwork—his IEP and the neuropsychological test and the notes about his progress and whether or not he can write in cursive and how his anxiety interferes with just about everything in his life.
You’ve seen the report that identifies him as an individual on the spectrum.
I have all the same paperwork. I keep it in a bright blue folder that I bought over ten years ago when he was first diagnosed. Once a year or so, I leaf through it all and look at the forms filled out by almost a hundred doctors, therapists, counselors, and behavioralists.
In the very beginning, they made me cry. Maybe not cry, exactly, but my eyes would fill with tears when I glanced over the words and I got kind of pit in the bottom of my stomach. I don’t really cry that much anymore. Over the years, I’ve learned to not take them so seriously.
When I read them now, mostly see the big gaping holes between the black and white sentences. I see how flat and colorless the words are. See, there’s a lot more to my son, Jack. There’s a lot that the reports don’t say. And that’s the stuff I really want you to know.
For some reason, whenever we go out to eat, he has to smell the menu before he orders his food.
He believes in Santa, and the Easter Bunny, and the Tooth Fairy.
He’s scared of fire drills.
Never, under any circumstances, let him near your phone. In an instant, the very boy who had trouble understanding a simple math equation will figure out your password, download updates, and order a ton of movies off of Amazon.
He loves movies. He always orders a medium-sized popcorn and eats practically the whole thing himself.
Try, if you can, to avoid all topics related to Disney, Brazilian wood spiders, and whether pumpkin-flavored Oreos taste better than the red velvet ones.
He loves to swing, especially when he’s agitated or mad.
He does not have any allergies. He may, however, tell you he is allergic to citrus fruit, which is a bald-faced lie.
He rubs his fingers down the side of his nose a lot. I think it makes him feel calmer.
He will not be easy to teach, although he longs to learn.
Have you ever had a key that you tried to fit into a lock, but no matter how much you tried to turn it this way and that way, it still wouldn’t open it?
That’s how I feel about Jack. In my hand I hold the keys—the reports and the notes and folder and the diagnosis—yet still, I cannot unlock him.
Last Wednesday was his first day of school. The morning was kind of terrible. He woke up at 5:30 and it was just barely light outside and he was already agitated and jumpy. He kept telling me he wasn’t going to this new stupid dumb hideous school because he needed to be like everyone else not so different all the dumb time different sucks.
I managed to get him to hold his backpack and steer him out the door and just as he stepped onto the front porch, he stopped. He laid facedown, with his head in his hands. I wasn’t sure what to do.
I mean, nowhere in that big blue folder does it say what to do when my son sprawls out on the smooth, hard boards of the front porch just a few minutes before his bus is supposed to come.
It will not be easy, to teach my son.
The next day was a little better. His mood was lighter. He walked to the bottom of our driveway without me prompting him at all, and he even smiled just the tiniest smile before he climbed into the minivan that now brings him to school. It was as though a big heavy weight had slid off of his shoulders and fallen to the floor.
And this weekend, for the first time in months—literally, months—he laughed out loud.
When our Jack-a-boo stopped laughing last spring, it was though someone had shut off all the lights inside of our house. He and I sat together in the shadows, and we waited for the sun to shine.
The reports don’t warn you of the darkness.
He likes to pray before he eats dinner, even when we’re in a restaurant.
He can’t see a thing without his glasses.
He loves cheeseburgers.
Every once in a while, he will crack a joke that is so funny, so surprising, you will nearly fall out of your chair.
School has already begun, but our family holding on to the last days of summer as tightly as we can. Last weekend, we went tubing down a great big river. In this river, there were beaches and rocks and, every mile or so, rope swings.
We all sat in tubes or stood in the water, watching the kids and the grown-ups swing like Tarzan into the deep, clear water. Then Jack decided he wanted to jump. He stood at the top of the beach with the rope in his hands and hesitated.
People started to yell things. Mostly good things like come on you can do it! but after a few long minutes the crowd got a little restless. They got tired of watching Jack lift up on his toes and bend his knees a little and try to jump but being too scared to actually do it.
Let’s go, kid! You are holding everyone up!
It was one of the most painful moments I’d ever had as a mother, listening to people get annoyed and feeling a little annoyed myself and also sad and protective and mad.
I watched my husband Joe, standing in the water. I saw him put his hand in the air and hold up his fingers, one-two-three Jack come on buddy swing!
It will not be easy to teach him, this boy Jack.
I can’t tell you what kind of learner he is.
I can tell you that I love him so much I can’t breathe. I love him for all of his vulnerabilities, his challenges, his pride, and his naiveté.
I can tell you he is so much more than a report. He is beyond the paper, and bigger than a folder. He is progress and change and hope and sadness and longing all wrapped up in one tall, blue-eyed boy.
He is the long, smooth arc at the end of the rope on a sun-drenched afternoon.
I did it. I jumped.
My name is Carrie. I am Jack’s mom.
It’s August now. The days are still long and hot and humid, but there is a tinge of autumn in the air, especially at night.
Most of you are starting to think about school again. You are reading over your supply list for seventh grade and wondering if your new teacher is nice or strict.
I wonder if you remember a boy named Jack from last year. He’s tall, and he wears glasses, and sometimes he jumps around a lot.
He bought his lunch from the cafeteria every single day.
For the annual science project he made an experiment with cotton candy to see if it would dissolve in water.
A lot of times he got mad.
He got mad about the computer, and about recess, and about the complicated tangle of friendships his spectrum brain could not unravel.
He screamed swear words. He threw books. He banged his head on the wall and flapped his hands around his ears.
Sometimes when he got mad, the teachers had to take all of you out of the classroom so he could try to calm down by himself.
Maybe this made you nervous. Maybe you exchanged looks with each other as you filed out into the hallway. Maybe you worried about him, or you were scared of him. Maybe you knew about his autism so you felt a little sad for him.
He hates himself for that. He hates himself for the room-clearing and the book-throwing and head-banging.
Have you ever hated yourself? Have you ever been so embarrassed and ashamed of the way you acted that you felt dark and empty and all alone inside?
This boy Jack, he feels that way a lot of the time.
In a few short weeks, you will go to the middle school that was built in 2007 and is attached to the high school and meet your new teachers. You will eat your lunch in the cafeteria and check books out of the library, and in this middle school, you will start to dream of your future, grown-up selves.
Maybe you will dream of becoming astronauts, or ballerinas, or teachers or gardeners or lawyers.
Or of moving to Florida, or flying a plane, or backpacking across Europe.
This boy Jack, well, he just dreams of being normal.
He dreams about being like each one of you, with your easy smiles and your calm, still bodies.
He dreams of shedding his autism the way a caterpillar sheds his cocoon and turns into a bright, incandescent butterfly.
Jack is not coming back to public school this year.
Over the summer, his mom and his dad spent a lot of time researching academic options and meeting with people for an out-of district-referral. This was very hard for them. They never imagined their son would not make it in public school.
Their son is not making it in public school.
And the mom, well, she has tried to avoid this solution for as long as she could. See, she has five kids and she always pictured them like five little ducklings walking a similar path.
Now she has to pluck one of her ducklings out of line, and send him off to a school ten miles in the other direction all by himself.
This school, it only has thirty-five kids. It is mostly boys with just a couple of girls.
There is no cafeteria.
There is no big bus.
On the first day of his school, this boy Jack will climb into a minivan that has a sign attached to the top of it. The sign says School Bus, but it isn’t really a bus.
This is what hurts the mom’s heart the most. It hurts her the most because she remembers when Jack started first grade and he insisted on riding the big bus like his older brother, Joey. He didn’t talk as well then but still, they knew what he meant.
Big bus like Joey. Ride big bus.
But it’s time. This mom, she knows this.
She knows that if she continues to clutch her dreams too tightly in her fingers, they will disintegrate like the luminous wings on her fragile butterfly. They will lose their color, and their softness, and turn to dust.
She has to let her dreams breathe, and move, and change.
It is time to accept what is before her and look at what’s ahead of her and be willing to consider a different boy and a different school and a different life.
See, when it comes to autism, there are no do-overs. There are no second chances. This mom has just one opportunity to be his mom and she has to make the very best right decision for him, even when the best right decision is so terribly hard that it makes her heart fold over on top of itself.
I will go. Like Joey.
She told him last Wednesday about his new school. They were driving home after the last day of his summer program, and he was talking on and on about his teacher for seventh grade and whether or not they should look for blue pencils.
She pulled the car into the garage and turned off the engine and turned to face him in the seat next to her.
Jack, buddy. Listen to me. You aren’t going back to public school.
They didn’t plan to tell him this way, the mom and the dad. They planned to sit him down at the long kitchen table and have a discussion so they could explain the reasons and outline the plan.
But if she had to hear him talk about seventh grade one more minute she was afraid she might go crazy. It felt too much like a big, ugly, snake-y lie.
Sitting in the cool, dark garage, it was as if everything around them—the dad’s old work boots and the broom on the hook and the soccer ball in the corner—took a collective breath together and waited.
This boy Jack, well, he simply dissolved. There is no other way to describe it.
She held him across the console of their red minivan and even though she could feel the hate and rage and shame radiate off of his body like the sun, he let her hold him. He doesn’t always let her hold him.
Just let me be normal please let me go I will be good please please please I have to go I need a new start I will do it right I will be good like Joey I have to go like Joey.
While he sobbed and screamed, she thought about all the things she wanted him to know.
She wanted him to know this is not because he was bad or because he did something wrong. She knows how hard everyone around him worked–his teachers and his aide and his case manager. She knows how hard he worked.
But at some point, autism made his corners sharper and more rigid, and it became harder and harder to wedge him into the round, smooth games at recess.
She wanted to tell him how many nights she and his dad spent talking in the darkness—each playing something called devil’s advocate and tossing around options and trying to figure out a way to keep their precious son marching in his duckling line.
What if we paid for—
The school said we can’t do that.
How about if we try one more year?
I don’t think I can take one more year, and neither can he.
He’s going to be devastated.
She held him while he cried big, wet tears. She stroked his soft hair and for a second he laid his head in her lap and she rested her head on top of his, and then all at once he lifted up and slammed into her chin and she bit her tongue very hard. Tears sprang into her eyes.
“Why! For you. Are CRYING.”
Oh, my Jack-a-boo, she thought in her head.
She wanted to tell him she was crying for all the things he wouldn’t have; a tuxedo for the prom and hot lunch in a noisy cafeteria and the chance to stand at the bus stop with his three brothers and one sister on the first day of school.
But she knows it is time—it is time to make his world small and cozy and warm. It’s time for him to relax in his cocoon, and just be the most perfect-est caterpillar ever. In his new school, he can blossom into a butterfly whenever he’s ready.
It’s August now. In just a few short weeks, you will make the climb up the hill to the middle school that was built in 2007.
As you sit in your new classrooms and listen to your new teachers, I only hope one thing.
Don’t forget him.
Please, don’t forget this boy who tried so hard and who will never give up and who wants to be just like you.
Last Wednesday, Joe and I took the kids to this pool club in our town.
It’s a casual place with a playground and gas grills and tennis and volleyball. All day long kids run in packs which dissolve and regroup as families come and go. They beg to try each other’s snacks and toss baseballs to each other on the dusty field and play a funny game called Dibble at the edge of the pool.
Jack doesn’t care about the groups of kids or their snacks or their games. He has never once played Dibble. What Jack wants is the diving board.
The entire time we’re there, he jumps off of it, swims to the side, climbs the ladder, and jumps again. He averages about four thousand million and twenty-two hundred jumps per visit, and if you think four thousand million and twenty-two hundred isn’t a real number, well, you’ve never met my son with autism.
(The other thing he likes to do is swing on the swings two thousand hundred times and then complain he doesn’t feel so well.)
The thing is, it’s painful to watch him on the diving board because he takes forever to actually jump. He walks to the edge and stands there, stimming and twitching and pacing while all the other kids pile up behind him.
“Jack! Jump! Now!”
“STOP. For TELLING ME. You made me. LOSE FOCUS.”
And then the whole process begins again—the pacing and the stimming and the twitching. He usually runs his hands over the length of his body once or twice before he finally—finally—takes the plunge and jumps into the water. Then he screams in a high-pitch voice that it is so cold he’s going to die, and he climbs out and gets right back in line.
On Wednesday I turned to my husband Joe and said, “I think I should go tell the lifeguard, you know, who Jack is.”
“Honey, I think he knows who Jack is by now.”
“How? It’s the first day of summer and we’ve only been here ten minutes.”
Then I followed Joe’s gaze to the diving board, where my son stood, rubbing and twitching.
“Yeah, I guess you’re right.”
When Jack was about two, I used to play this little game in my head where I asked myself what my life would be like if he wasn’t diagnosed with the spectrum disorder and he didn’t scream every time I turned on the vacuum and try to run out the door every time I left it unlocked.
I used to contemplate all the ways in which my life would be easier if my son were more, well, normal.
I could go to the grocery store without a stomach ache.
I could stop worrying about the way he only spoke ten words and the way he wouldn’t eat anything wet like yogurt and the way he balanced on his tippy-toes when he walked.
I could stop talking to specialists and trying to describe the way my little boy never pointed, never babbled, never did anything a two-year old should probably do.
I could breathe.
I could relax.
I could be happy.
I am not incredibly proud about this way of thinking, but for about six months I did it and there you have it. At some point, I realized it was sad and mean and weird. Mostly, it was unproductive, and I figured I might have more luck figuring out the boy in front of me if I stopped imaging the boy I thought I wanted.
In the past ten years, I haven’t looked back. He is who he is, and it is pointless to ruminate otherwise. I do, however, occasionally wonder what kind of person—what kind of mother—I would have been if he didn’t have autism.
Watching my tall son walk up and down the diving board while Joe dozed in the chair beside me, I wondered it again. Who would I be without this boy and his spectrum diagnosis?
Would I have a career?
Would I have five kids?
Would I still be married?
Would I be rich because I wouldn’t have spent so much money on Redbox and ITunes?
Would I be well rested because I could sleep past 5:42 every morning and stop waking up in the middle of the night wondering what will happen after I die?
Would I stop trying to look into the future the way a fortune-teller looks into her crystal ball, trying to predict how it will all turn out for my Jack-a-boo, my Jack-Attack, my little-big boy who once upon a time was christened John?
Would I one day be an empty nester?
Would I worry about grades all the time, and rant and rave when my oldest son Joey brought home a B+ in algebra, telling him to study more—to work harder, to do more, to be better?
Would I think a person’s character is measured by a letter grade, his value determined by performance on a test or the length of his book reports?
Would I think marriage counseling was for the weak?
Would I know the real meaning of unconditional love?
Would I know what it feels like to long for the season’s change—for New Hampshire’s wintry days to lengthen into a green spring, and eventually summer? Oh, sure I would say I can’t wait for spring and won’t summer be great and all that. I would probably mean it, too.
But would I know the visceral need change; the need for the sun to shine more brightly and the dirty snow to melt and my boy to return to me once more from the depths of his besieging anxiety?
Would I understand the power of medicine? Or would I be one of those, let’s say, judge-y people who stopped listening the second someone mentioned giving their kiddo a pill every day?
Would I know how to root for the underdog?
Would I have had the perfect family?
Would I be happy?
I guess at the end of the day, it’s really hard to know who I would be without Jack. It’s hard to know just how much autism has or has not changed me as a mother, as a woman, as a person. But whatever lessons I’ve learned about marriage or report cards or yoga or prayer, I do know two things.
There is no such thing as perfect, and there is no such thing as normal.
I looked up at the diving board again. I shielded my eyes against the June sun and saw my boy climb up onto the long white platform. I watched him pace and turn and rub his nose. I heard the lifeguard shout out, “Come on, Jack! You can do it!”
I breathed in the warm summer air that was slightly tinged with chlorine and I relaxed back in the chair and I thought just one single thought.
I am happy.