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 puts sets her plate 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.
We have exactly eight days left to sixth grade, including today. We are in the home stretch, the final mile, the last bite of the big enchilada.
I have to tell you, this year felt long and short all at the same time.
Long, because you feel apart midway through. You fell apart big.
Short, because it’s almost over and then you switch schools for seventh grade. In our town, we call this going up the hill, because your next school is attached to the high school, which sits on top of a hill.
I kind of want to forget all about this year, the way you forget the pain of childbirth or a bad dream in the morning.
I want to forget all the times I had to pick you up because you were screaming and jumping too much to ride the bus.
I want to forget you hit a teacher.
I want to forget you bit your aide.
I want to forget I had to sign a piece of paper from the superintendent’s office with words like incident and aggression and containment typed out in black and white letters.
I want to forget all the mistakes I made.
I need summer.
Daddy and I sat in a meeting a few months ago and a very kind man on the opposite side of the table gently asked us, “How do you see Jack finishing out high school?”
And me and your father, well, we just looked at each other and back at the man and down at our shoes and up at the ceiling.
Then this man said a lot of words like traditional academic curriculum and practical life skills and until he’s twenty-one.
When he mentioned that last part, the part about you maybe staying in high school until you are twenty-one, I thought about how Charlie would cross the stage in a cap and gown with a diploma in his hand before you did and we would have a big party back at the house like a barbecue and you would linger, awkward and uncertain, while friends and family congratulated your younger brother on his graduation and clapped him on the back and slipped him slim white envelopes.
All your life, I’ve watched your two younger brothers and one sister pass you by; sprinting around life’s track while you seem to stand still. Celebrating their progress while at the same time noticing your stillness, well, it never fails to make my heart squeeze.
See, Jack, within a family there is an order. There is a sequence. It is not meant to be a disorganized game of leap-frog, where younger children outpace their older, taller, blue-eyed brother when it comes to things like communication and social skills and high school.
Some days, I don’t know how we got here—how I wound up a big round table with a lot of nice people, tossing around your future like the two sides of a copper penny.
I mean, obviously I do know how I got here. I got here by way of wonky genetics and a bunch of appointments with specialists and eventually, a diagnosis on a form.
Then I stumbled through the years telling millions of social stories and asking you to look in my eyes and quiet your body and hold my hand and pack your snack and take your medicine.
Yet here I am, standing at the crossroad of a proverbial coin toss, trying to call out heads or tails before the penny drops to the floor.
I am tired.
About a week after our meeting at the big round table, I had a dream about you.
I dreamed you were standing at the counter in a pizza place, trying to buy a pizza. Even though you were the same size as your 12-year old self, with the same haircut and blue-framed glasses, I could tell you were older.
You were trying to count out the change on the counter. It was the kind of counter that has a thick sheet of plexiglass laid over old menus and advertisements. You kept mixing up the quarters and the nickels.
I watched you get frustrated, and angry.
Suddenly you took a credit card out of your pocket and handed it to the girl at the register. She handed you back a slip with a pen but you kept shaking your head. You didn’t know you had to write your signature on the bottom. You walked out with your pizza box clutched between your hands. Your eyes were wild.
As soon as you walked into the parking lot, two big men walked up to you very scary-like and fast. One put his hand on your shoulder while the other one snatched the pizza from your hands and laughed in your face. They turned and walked away.
When they were gone you screamed and cried. You banged your head with your fists.
You were so, so mad and confused. You were hungry. All you wanted was to take your pizza home and put the box on the counter and eat a piece off of a paper plate.
For the whole next day, I carried this dream around with me. It nagged like a toothache, except the ache was in my soul. It was a soul-ache.
Before I dreamed of you, I wanted the easy answer. I wanted you to learn history and algebra and graduate on time and basically follow a very traditional academic trajectory.
The dream made me think differently. It opened up my brain to consider other possibilities–other goals–some simple and concrete, others more abstract.
I want you to know how to make the right change and sign your name and defend yourself in a darkened parking lot.
I want you to have the things that are rightfully yours; whether that is a timely graduation, or a credit card of your own, or a slice of warm pizza on a white paper plate.
I want you to be the best person you can possibly be, and that is going to take a lot of time and energy and strength and willpower.
I want you to know you are worth it.
Right now, though, what I mostly want is summer. I want a sweet release from your tantrums, your tattered blue homework folder, your frustrations on the playground. I long for this new season the way a thirsty person longs for water.
I mean, I know that summer doesn’t mean a vacation from autism, because like a nocturnal animal in the dark of the night, the spectrum never sleeps. It is without season. It knows no clock.
It doesn’t mean the exquisite ache in my soul will ever fully subside, but it will quiet for a time underneath the warm July sun.
And in this quiet, I can turn the imaginary penny over and over in the palm of my hand, and consider the many ways we’ll help you up the hill.
(Author’s note: I wrote this post from my son Jack’s perspective, based on conversations and observations of him in New York this weekend, and in life.)
We went to New York City this weekend.
We left on Friday, and it took us five hours to drive there. We stayed in a place called Times Square, which was noisy and smelly and crowded, like all the people in the world were standing and talking and eating in one spot.
My father held my hand the whole time. Usually that would have made me mad and I would have told him no, because I am not a baby, I am twelve and even though I have autism I can walk by myself. But in New York City there were so many people and it made me scared that I might disappear.
Everywhere you looked in Times Square there were people. People laughing and people talking on their phones and people walking with serious faces. People eating hotdogs, and buying sodas, and crossing the street with big bags looped over their arms.
There were people dressed in costumes like Elmo and Minnie Mouse and The Incredible Hulk. There was a lady who had nothing on but underwear and she had the American flag painted all over the top of her body, but you could still see her you-know-whats.
I never saw the American flag like that. I’ve seen it hanging from a flagpole and waving in the wind and, once, wrapped around a man’s shoulders on TV, but I have never seen it painted on a woman’s body.
I started to say, “Naked, naked. She was naked,” over and over again.
“Jack,” my mother said with her voice low. “In our culture we don’t say—“
“I know. Okay, I know.” I tucked the word naked back in my brain where it buzzed around like a bee and I didn’t let it come out of my mouth again.
She says this a lot now, my mother. She tells me there are all kinds of rules in our culture which I have to try to follow. They aren’t like law-rules. If you break them, you won’t go to jail or anything like that. They are just rules that make everyone feel more comfortable.
For example, in our culture, you shouldn’t talk about people’s fatness, or their oldness, or what color their skin is. It is okay to talk about how tall someone is if you say it in just the right way so they don’t feel too bad that they look like a giant.
In our culture, it is not polite to put your hands in your pants if you are a boy even if it feels very good. That is called private behavior and it is something you only do if you are alone by yourself.
In our culture, you are supposed to look people straight into their eyes even if it gives you a headache. That way they know you are listening to them and you hear their words.
A lot of things in our culture don’t make sense to me.
It doesn’t make sense that a lady can walk around with American flags painted on her you-know-what’s, but every time I put my hand in my pants someone tells me to stop.
It doesn’t make sense that people only think you hear them if you look at them. You hear with your ears, not your eyes.
It doesn’t make sense that it’s okay to tell the truth sometimes but not all the time. Like if you were the one who ate the last cookie you have to be honest about it, but if you see a man with no leg you can’t say, “You are missing a leg!” It could hurt his feelings, even though he must know he doesn’t have one of his legs anymore.
On Saturday we walked all around and took a bus that had no top. We sat up there and the sun felt like it was cooking my head right off my neck. I had a fear that I would fall right off the top of that bus and crash onto the street below us, so I held my mother’s arm very tightly.
I have fears all day long. I’ve always had them, but lately I have started to tell my mother about them. I look at her eyes and I say, “I am having a fear now.”
The first time I told her I was having a fear, her whole face got a smile on it and that made me mad and confused.
“Are you for happy. That I have a fear.”
“No! Jack, no. I am just so happy you told me about your fear. So now I can help you.”
Mostly I have fears at school. I have a fear that there won’t be enough computers, and a fear that I will be tagged it at recess and I’ll have to try to catch people even though I am not fast at all.
I have had the same teacher for two years now. Mrs. Steere. It is like you steer a bike, only with an extra e at the end. She was my teacher in fifth grade and now in sixth grade. In fifth grade, whenever I thought about Mrs. Steere I felt light and happy. She has a very quiet voice and a nice smile.
But sixth grade, well, it hasn’t been so good. I got a big mad feeling at her one day and I said mean words and I tried to kick her with my foot. So now when I think about her I feel a little happy, but also sad and kind of like I made myself look bad.
In our culture, it is not okay to try to kick your teacher. You have to take your big feelings to another room where you calm down for a little while.
After the bus with no ceiling, we went to the Empire State Building, and out for lunch, and then to this museum where everyone was made out of wax.
But for the whole day, all I wanted to do was go to the M&M store. I saw it when we first went to our hotel and it had a big, huge screen where M&M’s exploded and danced, which is silly because M&M’s can’t move like that. I asked my mother a lot of times when we were going to go. She kept saying she didn’t know the exact time, but that we would definitely get there.
In our culture, people don’t like when you ask the same question a lot of times. Their mouths get tight like they have eaten a very sour piece of candy.
I liked the wax museum. There was Spiderman, and Taylor Swift, and George Bush, and my very favorite singer, Selena Gomez. I stood next to her for a picture and I couldn’t help it, I reached out and touched her leg to see what it felt like.
My mother was standing with the camera and she called over to me fast-like, “Jack! Don’t do that!”
In our culture, I guess you can’t try to feel fake people who are made out of wax. It is not appropriate.
After all that, we finally made it to the M&M store. I was so happy.
It was very busy in there. There were two floors full of everything you could think of—M&M socks and blankets and t-shirts and hats.
“Jack,” my mother said. “Look at that line. We should go, I’ll buy you candy at home.”
I felt really mad then. I started to hit my hands on my head the way I always do when I need the words to come out but they won’t.
I looked over and Daddy was standing by the door, trying to make sure my brother Henry didn’t keep touching the key chains. My stomach squeezed up tight.
“Jack, come on, it’s crazy in here.”
“I have to. I have to.”
“You have to what? They have M&M’s in New Hampshire, I’ll buy you a bunch as soon as we get home.”
“On Tuesday. Tuesday. It is Mrs. Steere’s birthday.”
My mother turned and looked me right in my face. “You want to buy her a present?”
“Yes. For she likes. Chocolate.”
All day I had been thinking about it. I just didn’t know how to say it. So I picked out a plastic bottle full of M&M’s. It says Happy Birthday on it.
I hope she likes it.
I think it’s time we talked about this. Sex. And autism.
Or, as my son with autism calls it, “The Sex.”
(Somewhere in southern New Hampshire, a dark-haired dentist just fell out of his chair.)
Listen, I’m not embarrassed about sex. It is natural. It is ordinary. It is normal, and in many cases it’s brought forth beautiful, annoying, messy, loud, impatient children.
It all started with this conversation a few weeks ago.
Jack: What is this SEX all about?
Me: Uh, well.
Joe, halfway out of his seat: I need a drink for this.
Jack: So, who has THE SEX?
Me: Uh, well.
Joe: You should only have it with your wife.
Jack: YOU HAVE DONE SEX?
Me: Uh, well.
Joe: Yes. Yes, we have.
Jack: When? When you go to RESTAURANTS on SATURDAY NIGHT and we have a BABYSITTER?
Joe: Not exactly.
We didn’t tell him everything, of course. I mean, I was afraid his head might actually explode—that the neurons and synapses and whatever parts of his cerebral cortex responsible for processing information might start to smoke and catch fire.
I mean, we’re talking about a boy who would rather bump into the kitchen counter to avoid brushing his arm against mine. A boy who has never, ever even one time by accident or when he was dozing off to sleep or crying because he hurt himself, reached for me with both arms or kissed my cheek goodnight.
He’s never told us he loves us. Not once.
I could return from a faraway trip to Antarctica where I spent the last eighteen months doing whatever people do in Antarctica and I can guarantee the second I walked in the door, Jack would walk past right past me.
And he’s young. I mean, he’s not physically young—his 12-year old body is beginning the long, jagged ascent into adulthood and hormones are starting to skyrocket through his veins or his bones or wherever it is that hormones travel.
But his mind and his heart are slower. I would say his emotional maturity hovers around that of maybe an 8-year old. I mean, yesterday he spent forty-five minutes perseverating about why the green Crayola scissors are better than the blue ones.
Speaking of minutes, not five minutes ago he was a toddler with less than ten words to his name. We had to get services. We had to pay for speech therapists. We had to coax sounds from his mouth the way you coax a stray kitten to drink milk.
And now, he wants to know about sex, or the sex. We told him just enough. We told him the privates are involved, and it’s usually the way two people make a baby.
“Is it fun,” he asked with his eyes narrowed.
“Uh, well,” I said. “It’s like—“
“Yes,” Joe interrupted.
Jack got up from the table, crossed his arms, and marched away. “You are. Disgusting.”
The next afternoon he started in on me as soon as he stepped off the bus.
“So you secretly had THE SEX without us knowing.”
“I guess. Come on, let’s talk about this inside. I made cookies for snack!”
But he was not interested in redirection. “When was the last time you did it.”
“I don’t remember.”
“What time do you do it. The sex. 2:00 am? 3:00 am? In the AFTERNOON?”
“I’m not sure.”
“Do you do it to music.”
“Does it take like fifteen minutes. Or an hour.”
“Do you have to hug the person.”
“Are you allowed to do it. With your clothes on.”
“It sounds like the lamest. Thing ever.”
He stood with his hand on the doorknob. “If I have to do it. I will keep my clothes on.”
“Okay, that sounds like a good plan, Jack-a-boo.”
I’ve started running outside again. When I run, I think about a million things; whether or not we need peanut butter and if Charlie is ready for a sleepover and how I need to stop for gas on the way to Target.
I think about Jack. I think about autism.
After a winter of yoga and treadmill work, my endurance on pavement has plummeted, and after a few miserable runs where all I could hear was my ragged, gasping breath, I decided I needed to listen to music.
The next morning I grabbed my phone and some ear buds. I walked down the driveway and looked over my playlists, when I noticed one called Jack’s 2016 Hits, except it was all in capitals so it looked liked JACK’S 2016 HITS.
Winding slowly through our hilly back roads, I listened to the music he’d downloaded. I smiled when Prince came on, followed by the Beatles, and after that, Meghan Trainor.
I thought about the way, for the first time ever, he has started to sing out loud in the car and in the shower. He knows every single word.
After about a mile or so, a song I had never heard before came on, and I slowed down a little so I could check who was singing. It was someone by the name of Ruth B. I had never heard of her either.
Through my green ear buds streamed the time-worn story about Tinkerbell, and Captain Hook, the sisterly affection of a girl with yellow hair and a boy who never wants to grow to a man.
I stopped at the top of my street to my breath and I checked the time. It was 10:37. Across town, in a two-story school with a brick front, Jack was in gym class.
I wanted to keep running until I ran all the way to the school and walked into the big, loud gymnasium full of sixth graders. I wanted to scan the room until I found his face in the crowd. I would know that face absolutely anywhere; the way it is a little round with a slight cleft in the chin, the way his glasses bend just so around his ears and his hair is short like a crew cut.
I wanted to kneel before him on the shiny wood floor, and take his shoulders in my hands, and tell him that I see now. I see it’s not about the sex or whether you wear clothes or want to make a baby.
It’s about childhood, and ambiguity. It’s about standing, stranded, in one world, and trying to figure out how to give a kiss goodnight.
With my hands on his shoulders and my knees on the ground, I would whisper gently in his ear.
Jack, you are a song out loud, a smile from the moon, a lost boy who has been found.
She is your Wendy. And we, your forever never land. For this, you will never be lonely.
About a million years ago, a kind doctor told me the best thing we could do for Jack was to give him siblings.
A lot of people ask me how we decided to have more kids once we knew something was up with him. I wish I had a more sophisticated answer to give, but the truth is, we just didn’t know what the heck we were doing. We had no plan.
People wonder if we worried about having another with autism. To be honest, we found out Jack was on the spectrum—originally diagnosed with Pervasive Developmental Disorder, Not Otherwise Specified—and we learned we were pregnant with our fourth child exactly one day later.
So, yes and no. It definitely crossed our minds that another child could have the same symptoms he did, but we didn’t spend a lot of time discussing or dwelling on it.
Partly this was because we had three boys under the age of three, and there wasn’t a whole lot of time to discuss anything.
And partly this was because we thought Jack would outgrow his symptoms and turn into a regular, sunny boy who played catch in the backyard and told jokes at the dinner table maybe, if we were really lucky—fingers crossed!—made the honor roll at school every once a while.
We were so precious, I can barely stand us.
But I will say this; the doctor was right. Deliberate or not, poor planning or simply naiveté, growing up alongside three boys and a girl has been very, very good for Jack.
He eats what they eat, when they eat. He takes a bath at bath time, he goes to bed when they go to bed—in a room he shares with his three brothers and a puppy.
He wears itchy khaki pants and a button-down shirt on holidays because our family dresses up on holidays. He says a prayer before dinner because our family begins the evening meal with a few moments of quiet.
Let me tell you, Jack is boss-ey with a Capital B. If he had the chance, this boy would control what we have for lunch everyday, what we watch on TV, and which movie theater we go to see Zootopia. But as one of five kids, he cannot run the show. He cannot be in charge all the time.
It’s more than that, though.
When Henry was about a year old, he had this giant Mickey Mouse doll. The thing stood at least two feet tall, and when you pressed the middle of his hand, he would shuffle and sing and laugh a high-pitched Mickey-laugh.
Jack hated that doll. He was probably about four years old at the time, and he would run shrieking from the room whenever it started to sing. One night after dinner, we found him trying tape Mickey’s mouth closed.
See, we can’t give him a perfect, quiet world. We can only help him learn to live where it’s loud and unpredictable; where Mickey sings and bedtime comes at 8:00 and your dad wants to go to a different movie theater because he has a gift card.
There are three other boys and one girl make sure of it.
Oh, it’s not as pretty as you might think. They pester him. They drag him off the couch and out of the house and into the yard when they need an extra body for games of tag, hide-and-seek, manhunt.
They repeat his name until he answers.
Jack, Jack, I am talking to you. Answer me.
They force him to share.
No! You chose the last song, now it’s my turn.
They push him and pull him and talk to him and love him. And I learned long ago not to get too involved—to let them fight their battles and ask their questions and play their games. This, to me, is his progress.
And it’s even more than that.
In our house, if it’s your birthday, you get to pick a restaurant for dinner. And one of the kids always picks the Japanese hibachi restaurant in town.
Jack hates Japanese hibachi. Sure, he’ll eat some chicken teriyaki, he just prefers it not be accompanied by a flaming onion volcano or people throwing food at his face.
I get it, I do. That big gong and all the fire and sake-soaked people shouting from the table next to us jangles my nerves too, and I’m not exactly on medication for anxiety.
But it’s a birthday, and we have to respect the wishes of the birthday child. Yet we also must respect Jack and his autism and the fact that loud, unexpected noises make him a nervous wreck. So, if we go to Japanese hibachi, he can bring headphones in for music, and if he needs to duck under the table for a few minutes, that’s fine too.
Whether it’s school, or church, dinner in a crowded restaurant, it can feel like we are jamming a square Jack into a round hole. But at home, our pegboard has no circles, or squares. There is just a Jack-shape.
Constantly we are balancing our familial seesaw; we tip this way and slide that way, until we stop at a perfect standstill–until we find a quiet harmony.
I will make room for autism. I will make room for you, my brother.
Jack is regressing lately. I don’t mean he’s losing language—although there’s been a bit of that, too—but his behavior is sliding backwards. He can’t cope in situations that used to cause him no stress. He is impulsive. His right-and-wrong reasoning is off; skewed.
And oh, the deregulation. Do you know, I never incorporated this word into my own vernacular until about a year ago? Sure, I’ve bandied around tantrum and the ubiquitous he threw a fit today, but deregulation is a whole new level.
It’s like a tantrum is the candle on a birthday cake, but deregulation is a blowtorch. Sure, both can burn the house down if you’re not careful, but deregulation melts everything in its path.
There are moments when he appears nearly incoherent—as though his brain is running at a marathon pace and the rest of him cannot keep up. It is scary, like watching a stranger inhabit our home.
I don’t know where he is. I don’t know how to reach him. And then, just as fast as it began, it is over, and he is back.
And I wonder what it’s like for them—for Joey, Charlie, Rose, and Henry–to see their brother disappear altogether and laugh maniacally at a joke no one told and twitch his fingers and scream and startle when someone bangs the cabinet door too loudly.
I wonder what it’s like when I stop them mid-sentence, finger raised, and say, “Please, let me just handle Jack for a second.”
Or when we all have to listen to him argue for over an hour about why the other movie theater is better than the gift-card movie theater.
I worry when I—and it shames me to say this—lash out after one of his meltdowns because my patience is as thin as rice paper and I am brittle.
Or when Jack’s starting to rev up and I’m trying to calm him, and I catch 10-year old Charlie’s face out of the corner of my eye—pale and serious.
I see 13-year old Joey put his hand gently on his younger brother’s shoulder at the bus stop to keep him from jumping and stimming right into the street.
And I worry less.
I listen when Charlie calls his older-brother across the yard, “Jack! One more time! Let’s play one more round of tag!”
And I worry less.
I hear Henry lean over during our hibachi dinner and whisper, “Jack. It’s almost over. They’re almost done singing.”
And I worry less.
I stand at my kitchen counter the morning after Easter, tired and annoyed because I’d just stepped on a sticky jellybean, and I watch my daughter tap her brother on the arm.
“Jackie,” she says, with her special nickname for him. “Jackie, look at me. Look. I made you this.” She holds up a long braid she’s made with the yarn from her new crocheting kit.
“I made you this stress braid. You can pull it as hard as you can whenever you feel yourself getting mad. It will help you.”
I look at her earnest face and I watch him slowly take the braid from her hand and turn it over in his own. I watch him pull it—once, twice—to test it’s strength, before he tucks it into his pocket.
And I worry less.
To Joey, Charlie, Rose, Henry, and every other brother and sister who lives alongside the spectrum disorder every single day, I wish you a happy forever autism awareness month.
May your world be filled with singing Mickey’s, flaming onions, and long, colorful strands of unbreakable yarn.
And in the middle of the chaos autism often wreaks—in the center of the storm when your voice seems lost and your needs unmet—I hope you know that you, too, are very, very loved.