I Wrote a Training Manual for Autism

The story about United Airlines asking a family and their teenage daughter to leave the plane was all over the news last week. Some people described it as a new low for the autism community.

I’ve read so much about it that I really don’t have anything to add, except this: it scares the heck out of me. It scares me because it could easily, easily happen to our family.

I can picture Jack getting agitated on a plane over something I didn’t see coming; maybe he forgot his Chapstick or his headphones aren’t working or a little kid is kicking his seat from behind.

I’d probably flag down the attendant and ask for another bag of pretzels to distract him or a new set of headphones or suggest maybe he switch seats so he doesn’t make anyone else uncomfortable.

And he or she might look confused for a second, and then I might tilt my head towards my son and shrug and smile apologetically, “He has autism. Just need some headphones to avoid a huge meltdown.”

I read a lot of comments about the need for special training—autism training—so flight attendants and restaurant personnel and librarians and people in the post office know what to expect when they deal with a person on the spectrum.

When I read this, two things ran through my head almost simultaneously.

First I thought, really? Training, for autism? Is this population of people really so unusual and scary and exclusive that the world needs special instructions about how to interact and understand them?

At the exact same time I thought, what a fantastic idea! I would definitely buy a manual for autism, because I really need to learn more about it. Some days it feels so unusual and scary and exclusive that I don’t understand it at all.

Then I wondered who would write it. Someone who actually has autism, like Jack?

It made me giggle to think of my 11-year old son standing at the head of a long table in a conference room, conducting training and addressing the attendees with his trademark opening line, “Okay, okay, okay.”

“Okay. Okay. This is a OREO. Be QUIET. You are all talking for me TOO MUCH.”

Or maybe a mother, like myself? Sure, I have some experience with the spectrum disorder, since I have been living alongside of it for over a decade now. I started to put some notes together, and they looked like this:

[The end.]

In the name of research, and maybe for a little bit of my own amusement, I asked Jack about it.

“Jack, if there was one thing you’d want people to know about your autism, what would it be?”

“Okay, okay, okay. What is your favorite fast food restaurant.”

“Yeah, I already answered that for you. What should we tell people about autism?”

(Long pause.)

(Opens bag of animal crackers.)

(Thoughtfully puts six in his mouth.)

“JACK!”

“What.”

“What should we tell people?”

(Long, painful pause.)

“About for what.”

“JACK! AUTISM! What would you like people to know about your autism?”

(Another pause. I tap my pencil impatiently.)

“I am just. For a person. Stop it. The pencil sound.”

Maybe a doctor would be best suited for the task, someone who sees the full variation and scope of the spectrum disorder on a regular basis. But I think even researchers would have a hard time quantifying the autism population.

“Persons with autism spectrum disorder often don’t like bright light, but some don’t mind it.

For some, loud noises cause extreme distress.

Persons with autism may have trouble with wet food, such as yogurt. Some eat nothing but yogurt.”

It’s like trying to squash the universe onto the head of a pin. It doesn’t fit. You can’t begin to contain it all or describe it all or even understand it all.

In my mind, I picture a triangle. I am at one corner, Jack at the second, and the rest of the world—cashiers and teachers and flight attendants and doctors—crowd into the third.

Everyone has a side when it comes to autism, but how do you know who has the right angle?

Or maybe the triangle is more of a pyramid, with thick, heavy walls that block the view and the sound. Jack can’t see or hear the world and they can’t see or hear him and I am trapped somewhere in the middle, waving my hands for a new set of headphones.

Unless I’m scanning for a typo, I never re-read any of my work. It makes me cringe the same way looking in the mirror when I’m trying on a bathing suit makes me cringe, so I just glance quickly for anything glaringly hideous and walk away.

Last week a few media outlets reposted this piece I wrote about travel and autism, so I forced myself to look it over and make sure there weren’t any extra commas or missing words. And I saw this line:

Every day, I fight for his place in this world. And every day, I fight for your place in his world.

When I re-read this, I realized I am not in the middle of the pyramid. Rather, I am standing on top. I am trying to get each side to peer around the heavy bricks—to know each other and like each other, and if nothing else, respect each other.

This weekend we went to see Disney’s Cinderella. As I’ve mentioned before, Jack is all about anything with Disney and fairy tales, and he couldn’t wait to see the latest movie.

Saturday morning he was up by 6:00 am checking the movie schedules, even though he’d checked them at least three dozen times the day before.

“Cinderella. At 4:20. We will to go.”

For the entire day his emotional pendulum swung wildly between distress and euphoria; threatening to hit his 6-year old brother Henry with a ball one minute, stimming and writing out the snacks we should buy the next.

“This day,” he announced to the girl behind the ticket counter when we walked into the theater, “is my dream come true.” She stared at him blankly.

He led us to the very first seat in the very front row, the ones you have to crane your neck so you can see the whole screen. As soon as the movie started, he never moved except to pop his candy in his mouth.

But he shouted. He talked, he cheered, and when the prince slid the glass slipper on Cinderella’s foot, he stood up and clapped. He was all at once rude and happy and disruptive.

Maybe the United Airlines situation wasn’t a new low for the autism community. In fact, maybe it’s a high. After all, we’re talking about autism. We’re discussing it. We’re trying to soften the corners of the pyramid so it may look more like a circle.

I watched Jack take a long mouthful of his drink, with his eyes fixed on Cinderella in her blue ball gown, and I thought of the perfect introduction to my autism training manual.

“Once upon a time, a boy named Jack was born with something called autism.

He is one in eighty-eight people affected with this disorder.

Or is it one in sixty-five?

Or maybe one in fifty-two.

He is one of many.

Although we refer to it as a disorder, it really isn’t. It’s more of a condition, or a way of living.

Research demonstrates that people with autism share some common characteristics: sensory processing issues and restrictions in social interactions and rigid, repetitive behavior.

But that is about all they share. After that, they are as different as snowflakes in winter.

Jack may seem scary and unpredictable. His movements are sudden and abrupt, and his voice can sound too loud for the room.

But this boy, he is surrounded by people. And his people would never, ever let him hurt or bother or disrupt other people. In fact, his people spend an enormous amount of time planning and talking and forecasting to try and anticipate every side of the triangle.

He longs to see faraway lands—to ride on planes and sit on trains and swim in the ocean–and his people want him to see these things, to know life and love and travel.

In many ways, he is just like you. He is just like me. He is frustrated by change and he likes his food to be fast. He wants M&M’s with his movie, and the glass slipper on the right foot. He wants a happy ending that is full of promise and hope.

He is, in his own words, just for a person. And if you can remember that, well, that’s probably all the autism training you’ll ever need.”

[The end.]

Jack and one of his people.

Jack and one of his people.

In the Space of Now

When I made my First Communion about a thousand years ago, I was picked to bring the gifts to the altar.

For those who aren’t Catholic, this is a ritual performed during Mass where several people walk dow the aisle with gifts; the gift-bearers are meant to represent everyone in the church, and the gifts represent our collective struggle and worship and hope.

Only the specialist, most exceptional children are chosen for this task, obviously.

For the entire week before my communion, I floated on my wings of specialness. I was so, so excited. The dress! The gifts! The specialness!

At the rehearsal, my specialness came to a screeching halt. When I lined up next to my partner—a small blonde boy named Keith—to practice carrying the gifts, it was decided I was too tall for the job because I towered over him.

On Saturday, my daughter Rose made her First Communion. After ushering her three older brothers through the sacrament, I was thrilled to experience it with my only girl.

Together, we shopped for the perfect dress and the perfect little white shoes. She squealed when she tried them on because they had a tiny high heel. We researched hairstyles for her cute blonde bob, and decided that of course, we should weave flowers into the long white veil.

You can only imagine my delight when Sister Priscilla, the nun who is in charge of religious education at our church, called to ask if Rose would like to bring up the gifts during the ceremony.

Gasp! The specialness baton had been passed! My heart soared, and for a second I toyed with the idea of returning the little white heels and picking out some ballet flats, in case she was paired with someone small.

In the midst of all this planning, I read a post by fellow blogger Jim Walter.

Jim and I were e-troduced—yes! this is a thing now!—in a Facebook group for parents who have kids with autism. This group is honest and colorful and outspoken, which basically means there’s a lot of swearing.

I always enjoyed Jim’s essays, and his Facebook status updates were pithy and fun, but I can’t say I know much about him. He appears to be around my age—forty or so—and he seems to like bacon a lot. He has two young daughters, Lily and Emma. Lily has autism.

As is the way with casual Internet connections, I didn’t really notice when he sort of dropped out of Cyberspace and stopped posting. Then one day he shared a quick update. His wife Leslie had died.

In a blog post a few days later, Jim described the way, in the midst of her own battle with cancer, Leslie petitioned to have their daughter Lily make First Communion with her class.

When his wife was admitted to hospice, Jim rushed to arrange for the communion to take place sooner, so Leslie could be present. They scheduled it for 4:00 the following day.

But his wife’s breathing continued to labor, and, panicked, Jim moved it up once again.

“I think we need to make communion happen at 1:00. Our girl is fading.” 

Leslie didn’t make it. And sitting at my kitchen counter reading Jim’s essay, I wept.

I wept thinking about Rose’s long white communion dress hanging in my closet upstairs. I wept over the precious little heels and the beaded veil and the flowers and the gifts.

I wept to know that from this point forward, every event in Jim’s life will have the tiniest shadow.

If only she was here to see this.

I wish she could watch you dance or hear you sing or feel your kiss.

Your mother would be so proud.

I have never been in the presence of a person who has passed from life. I imagine it’s all at once breathtaking and terrifying and exhilarating and devastating. I imagine it’s like reaching out a tentative hand, and for the briefest moment, touching the face of God.

When my son Jack was in kindergarten, I complained to one of our doctors that he was always near me. He didn’t want me to play with him, or snuggle or hold him. He didn’t want to talk to me or look at me or even share my bagel. He just, well, orbited me all day long. It drove me crazy.

“Uh huh,” the doctor said kindly. “He’s using you to regulate himself. This is common with kiddos who have autism.”

I stared at his red and blue plaid tie and listened to him explain that essentially, I am Jack’s thermometer, his barometer, his touchstone. He hovers near me to figure if it’s appropriate to laugh or cry, run or jump, eat or drink.

Jack is eleven now, and he still orbits me for much of the day. Sometimes it still drives me crazy, but mostly because it terrifies me.

What if something happened to me?

As a mother, I often contemplate my own mortality. I wonder if my husband Joe would remember that our oldest, Joey, likes ice in his milk at dinner and our third son, Charlie, hates to be alone when he’s in the shower. I’m not sure he knows that I buy Rose’s tights a size bigger because her legs are so long.

I worry he won’t find the recipe for our youngest son Henry’s favorite sausage kale pasta, or make sure all five kids trim their fingernails regularly.

But mostly I think about Jack. How would he process or understand death’s finality?

Maybe he would forget about me altogether. Maybe his complicated mind will close over all of our shared memories like quicksand; the cakes I helped him bake and the homework I helped him write and the time I took him to Chipotle so he could try a cheese quesadilla.

Whenever I hear or read a story like Jim and Leslie’s, my instinct is to jump into action. I will Savor Every Moment, all in capitals. I will Make The Most of My Life and Enjoy My Children and Feel Blessed, also in capitals.

But then the petty grievances start to pile up and interfere like paper cuts: the dryer shut off too early and now the clothes are still damp and I can’t fold them.

Jack won’t stop playing that song Macarena, Charlie takes a zillion hours to finish one math problem, we’re out of milk again.

I don’t want to bake cookies with Rose because then I’ll eat them and I’m trying to eat less sugar because people at Crossfit are on some detox and they are eating practically no sugar and the least I can do is not eat nine cookies at one time.

“The reason I felt like I had to tell this story now…though all the happy memory stories have really been such a balm to my grief, is that this weekend, Sunday, Lily’s communion class will officially go through their first holy communions. And proud parents will post their children’s pictures on Facebook and elsewhere with captions like “So proud of our big girl” and “Happy First Holy Communion, Baby!” 

And I wanted to post Lily’s Facebook pictures from her communion around the same time so that friends and family could celebrate her communion now too and tell her how proud we are of her and that we don’t have to focus so much on her mother’s death, at least not right now. Right now is for her.”

In between Jim’s words, I found my own message; instead of trying to Savor and Enjoy and Feel, I would be better off trying to live in the chaotic, unpredictable space of now.

In the space of now.

This phrase is only five words–just five syllables–but it’s powerful.

I will savor, and enjoy, and feel this moment, in this space, right now.

In the space of now, I will help him regulate.

In the space of now, I will eat a warm chocolate chip cookie.

I will dance the Macarena.

I will write out the recipe.

I will remember that some shadows are shaped like angels, with long, feathery wings and a heart-shaped smile.

In the space of now.

When Rose walked slowly toward the altar on Saturday with the gold chalice in her hands, I resisted the urge to reach for my camera the way I normally would. Instead, I just watched her. I watched the sweet curve of her cheek and noticed the way she’s become all angles and legs and elbows in the past few months. I saw how she bit her bottom lip in concentration, and the way her cheeks were flushed pink.

How, when she walked past our pew, she stood so tall.

Sister Priscilla and Rose

Sister Priscilla and Rose

(Read Jim’s full blog post here.)

Who Should Take the Blame for Autism?

I saw another article that claimed to solve the mystery of autism last week. This time, it was gestational diabetes.

It’s always something, isn’t it? Either autism is because of advanced paternal or maternal age, or the dot-com era, or people who eat gluten. It’s the manufacturers who made Round Up.

(I’m not even sure what Round Up is. I’ll be right back.)

(Oh. It’s weed killer you use for gardening and stuff. No wonder I didn’t know what it was.)

I know it’s all in the name of research and ultimately it’s super-important stuff, but the subtext of these headlines feel, well, a little vengeful. They feel like accusations.

I’m not trying to argue that we shouldn’t investigate the heck out of autism spectrum disorder. We most certainly should. We should research what’s causing it and fund the programs for it and do what it takes for people on the spectrum to lead full, productive, happy, meaningful lives.

But this undercurrent of blame hurts—a lot. It hurts to think a choice I did or didn’t make contributed to my son’s condition. It makes me feel hopeless.

Even though I know—I know—there’s nothing I could have done differently, I still pause when I read things like this. I hover over them for the tiniest second before I click on to something else.

And still I refer to the mini-checklist in my mind: nope, I didn’t have gestational diabetes. My husband Joe was not even thirty when Jack was born. Neither one of us are particularly savvy when it comes to technology, and I have never grown so much as a tomato on my own, so I never used Round Up.

On Mother’s Day in 2004, I gave birth to a 9-pound, 3-ounce baby boy. This boy was wired differently from the very beginning, and because of that we suspect genetics played a heavy role. That is our autism story, and I’m sticking to it.

But we all have our own stories to tell—our own pathway down the bumpy spectrum road. And each one is authentic and true and raw and sometimes, hilarious. Each one is simultaneously heartbreaking and heartwarming.

So how can science pin down a single cause, when autism hardly has a single story?

Blame.

You know how with a kaleidoscope you can look inside and see a thousand colors and patterns all at once? And then if you turn the dial a little bit, the colors and shapes move, and everything looks completely different?

I think autism is like a kaleidoscope. It is ever-changing and always shifting. It looks different to everyone.

And I think blame is a lot like a kaleidoscope, too. We can consider it from one angle, and feel pain and embarrassment and shame, or we can turn the dial just a smidge and know hope.

Because of his grandmother, Jack eats pears.

Because of his father, he understands prayer.

Because of his teachers, he wears his glasses all day long and only takes them off to sleep at night.

Blame them.

Because of my daughter Rose, Joe and I knew for sure that the sneaky anxiety snake was indeed whispering in his ear once again.

After eating breakfast together one morning, Rose waited until her brother went upstairs for his sneakers before she touched my arm and said softly, “Mom, something isn’t right with Jack.”

It was a few weeks after Easter, and she was still wearing the pink rabbit earrings that the Easter Bunny left in her basket. It was her very first pair of dangly earrings.

How can a 7-year old girl wearing her first pair of dangly earrings so aptly describe her big brother’s anxiety?

“He just isn’t himself.”

Because of 12-year old Joey, Jack runs track on Wednesdays.

See, Jack hates sports. He really hates anything right now that doesn’t have to do with YouTube videos and Oreos and baking cakes. So we signed him up for Special Olympics track team. And he threw the biggest fit you’ve ever seen until Joey agreed to do it with him.

And during the first practice, Joey took off down the track, his neon yellow sneaker flashing. He looked back over his shoulder at his brother, and then slowed just enough for Jack to catch up. Jack jumped on his back, laughing.

If Jack believes he is fast—that he can run like the wind and feel the cool breeze of a New Hampshire spring in his face—well, that’s all Joey’s fault.

Blame him.

Because of Wolfie, he knows how it feels to cry into the furry neck of a patient, waiting puppy.

Because of 6-year old Henry, he knows how to shout to be heard.

This weekend we had Jack’s birthday party. The extent to which my son obsessed over this event is difficult to put into words. Over and over and over and over, he wrote out long, messy lists and schedules and recipes and ingredients and more lists, until, frustrated beyond reason, I huddled in my bedroom and hid from him.

Then, about five days before, before he decided he needed to make blue cupcakes. Nothing but blue would do. We searched everywhere—Hannaford’s, Stop & Shop, Target—for blue cake mix. Then we tried Amazon. We found it.

Jack hovered over my shoulder while I sat at my computer and tried to add it to the cart. But it was considered an add-on—an item that’s so small you have to order a bunch of other things in order to buy it.

Jack started to jump and scream. I started to sweat.

Just as Jack and I were both about to lose our minds—albeit for very different reasons—9-year old Charlie walked into the office.

“Wait! Mom, why don’t you check the box that man Duff sent us? Maybe he gave us some blue mix.”

Sure enough, we dug around and found one. I nearly wept in gratitude.

Thank you, Duff Goldman. Thank you, Charlie. I blame both of you for the lumpy blue cupcakes that stained Jack’s teeth when he smiled.

Then there is Cody. Sweet, adorable, green-eyed Cody, the boy in Jack’s class who told another boy to leave Jack alone and stop calling him names.

I blame Cody for being brave and honest and kind. I blame him for being one of Jack’s very first friends.

Then there’s Jack himself; the owner, the landlord, the keeper of the spectrum key. He never asked for this diagnosis. He never asked for a cure or for headlines or blame.

And he is so much more than science.

He is a boy who can’t understand what an add-on means when you shop on Amazon.

He is a fifth-grader who longs to belong.

He is a brother and a son, a track-runner and a blue cupcake-baker.

Like a kaleidoscope, he is colorful and beautiful and perplexing.

Sometimes, he makes my eyes hurt.

Sometimes, he makes my head hurt and other times, my heart.

As the world of science continues to tackle the hard job of figuring out where autism comes from, I’m going to continue turning the kaleidoscope in my hands so I can learn the patterns and colors and mystery right in front of my very eyes.

I’m going to celebrate the people–and puppies–responsible for Jack’s progress, his joy, his confidence and safety.

“Hey. That is my friend. Don’t talk to him that way.”

Jack and Cody

Jack and Cody

Time is Running Out

Next week is my son Jack’s birthday. He will be eleven.

He stands almost at my nose now, and when we bought new sneakers last week, he picked a bright blue pair of Nikes—from the men’s department.

Double digits plus one.

Five years until he’s eligible for a driver’s license, and six until junior prom.

Seven years until high school graduation.

Ten more years until he can drink, and vote, and live in a college dorm or an apartment.

When I think of him turning eleven, there’s a tight, quiet panic in my chest. I feel like time is running out.

For so long I wanted a crystal ball so I could see into Jack’s future; when he was a pudgy 3-year old, I longed to know what he’d be like in kindergarten.

When he was in second grade, I worried about fourth grade.

And now that he’s in middle school, I still wonder about high school, about graduation, about his life as a man.

But at the same time, I want to turn the clock backwards, to nudge the minute and hour hands with my finger until it’s 2004, 2005, 2006 again. I want to do it over.

Although, to be honest, I can’t really say we would have done anything differently.

We had him evaluated for a speech delay and motor issues when he was just a year old—a baby, really. He was diagnosed with PDD-NOS, later changed to autism spectrum disorder, when he was barely a toddler.

Right away, we started speech therapy and occupational therapy and look in my eye therapy and point to the bird therapy.

(I’m just kidding about look in my eye therapy. This isn’t a real therapy. It means we told him to look in our eyes all the livelong day.)

(Point to the bird therapy is a real therapy. It was when every single time a dog/cat/truck/airplane/person went by, we would ask Jack to point to it. Look it up if you don’t believe me.)

(Don’t look it up.)

We did the hard things. We put him back in his chair seventeen-thousand five hundred times so he would know how to sit through dinner and use his napkin and eat with a fork.

We insisted he wear a shirt even though he was in his no-shirt phase.

We chased him through the mall so he would learn to hold our hands.

We played a game that we named after those brightly colored plastic bricks to show him how to climb steps one leg at a time: one Lego, two Lego, three Lego.

We taught him how to stay seated until the bus stopped, and we helped him figure out how to tie sneakers with laces so he wouldn’t be the only boy in class still wearing Velcro.

We showed him how to pray.

And still, I feel like there is an hourglass bolted down on our kitchen counter, and we only have so long until the sand filters to the bottom.

Was it enough? Is it enough? Will it be enough?

A decade plus a year.

Jack has so many plans for his own future. He wants to drive a Sequoia like his father and work in a fast food restaurant because, according to Jack, fast food is just about the best invention ever. “It is food. And it is fast.”

He wants to go to college that has a water slide.

He wants to get married.

He wants five kids.

He is complicated.

Here’s an example that I think perfectly captures my tender son.

Once a week, each class at school gets to buy a treat from something called Snack Shop during lunchtime. Jack’s class gets to do it on Thursday. Around 5:00 every Tuesday afternoon he starts counting his money over and over again.

“I need. A dollar. For if to buy the Orange Blossom.”

He counts it and then he packs it in his bag, then he unpacks it and re-counts it and packs it again.

“The Crazy Cone. It is seventy-five cents. It is so good to taste.”

Snack Shop is the highlight of fifth grade for Jack, and he looks forward to it so much that it makes my heart pull and ache and hurt in a thousand directions.

It is one more reminder of his naivete—his youngness, and watching him fold and re-fold his dollar bills, the things we need to prepare him for in the next ten years pile up in my mind like thick, wet snowflakes.

How will we keep him safe from Internet scams and sexual predators and drug dealers?

How will he learn about politics? How will he vote for a candidate or understand traffic detours or navigate the subtleties of romance?

And algebra?

I mean, really. Algebra? I can barely understand algebra, and my brain isn’t exactly cluttered with Orange Blossoms.

It’s not that he’s dumb. Certainly, emphatically not. It’s just that—how can I explain it? His mysterious mind locates a single topic or subject or movie like a runaway train on a track, and once he finds it, we are powerless to change the direction.

How will we ever make room for x-(y+345)= x- 2Y?

(This may not be an actual example of algebra.)

Although getting Jack and his brain-train through his day can feel like a Herculean job requiring a boundless supply of patience and fortitude and love, it really takes so little to make him happy.

Taylor Swift on the radio during a long car ride.

A family bowling trip, or when we all go to the movies to see the latest Disney movie.

An afternoon without homework, and the Orange Blossom from the Snack Shop.

A few weeks ago, the whole class lost Snack Shop because they left too many wrappers on the floor. Jack was beside himself. Then they all lost it again the following week for throwing food.

“I did not. Throw this food. Why is it. No Snack Shack? For me?” he asked wistfully about nine-thousand times.

I think I always longed for a crystal ball so I could stay one step ahead of him. But the truth is, there are some things for which I will never be prepared, and having to explain to my almost 11-year old wearing size nine men’s sneakers why he can’t buy ice cream at lunch because some kids threw their food is one of them.

Time is running out.

But I have not given up hope. I mean, from the moment this boy made his way into our world ten plus one years ago, I have hoped.

I hope he stops crying.

I hope he starts talking.

I hope he sleeps through the night.

I hope he points to the bird.

Now—eleven years later—I remain deliriously, ruthlessly hopeful.

I hope he doesn’t have to write another haiku for homework.

I hope he’ll eat this baked ziti.

I hope he sleeps through the night tonight.

I hope they get Snack Shop back.

I guess what I really want is not so much to look back or into the future, but to hold time perfectly still in my hand.

If time stood still, I could forget how many mistakes I have made with this boy. Because, oh, the mistakes I have made.

I snapped at him to put away the dang dollar before he lost it and I let him skip the poem assignment because I didn’t have the energy to fight about it anymore. I did not know how to explain that sometimes, an entire group of people are punished because they can’t figure out who threw the sticky wrapper on the floor.

If time stood still for a while, I would be able to help him understand the difference between Republicans and Democrats, how a credit card works, and why you try to hold the door open for people at the mall.

I could smooth his soft brown hair when he’s crying on his bed, and suggest a trip to Dairy Queen after dinner for his favorite cherry-dipped vanilla cone since he didn’t get the Orange Blossom at lunch.

I could keep him from being lonely, or sad, or lost.

I could keep him safe.

If time stands still, I can’t look forward or backward. I can only look at Jack. I can only see how possible he is.

But time stops for no thing—not even autism.

So in the meantime, as the clock ticks, I will try to remember that Jack’s progress has never been a linear equation, but rather a complicated algorithm of puddle-jumping and regression, untied shoelaces and forks thrown to the floor.

It is like algebra.

He has always done things on his own timetable; walking and talking and pointing at the bird, and his hourglass—like his future—is unlike anyone else’s in the entire world.

Maybe he won’t drive until he’s twenty instead of sixteen.

Maybe he’ll start to like teams sports in high school, maybe he’ll go to college a little later.

And maybe, when he’s ninety, he’ll finally use a fork to eat his meatball.

Like Jack himself, it is all possible.

In the meantime, we will return to the basics. We will continue do all the hard things that made our Jack-a-boo who he is today; a boy who will hold my hand in the parking lot and bend his head to pray in church, an eleven-year old with bright blue sneakers and a dollar folded neatly in his backpack.

Together, we will take one colorful step at a time. One Lego, two Lego, three Lego, four.

One-year old Jack.

One-year old Jack.

How to Have a Successful Play Date When Your Son Has Autism

Dear Lauren,

First of all, I’d like to apologize for taking so long to respond to your e-mail. You see, when I read the words Jack and play date in the same message, I got a little nervous.

But I really did enjoy meeting you last year at that ski place in Vermont. I mean, I couldn’t believe my ears when you told me you have four of your own children and then you went and adopted five more from Africa.

I tried to think of something to say about Africa, but I don’t know a whole lot about it. I mean, there are times when I hiss, “Do you know what the children in Africa are eating right now? Nothing!” at my five children if they turn their noses up at something I make for dinner, but that didn’t seem like an appropriate example.

Since we live so close to each other in New Hampshire, a play date just made sense—especially since your 9-year old, Asaminew, and my 10-year old, Jack, have autism. I mean, why wouldn’t they get along and just love, love, love each other? For over a year now, whenever we bump into each other at the grocery store, we’ve been promising one another we would get in touch and arrange a time to get together.

I guess you can say play dates are kind of my autism kryptonite; I want so badly for them to work for Jack, but we usually both come home sweating and shaking.

Oh sure, we go to the movies and restaurants and the grocery store. We take him to church. He’s been to the aquarium in Boston and all kinds of museums and once to see the Rockettes in New York—although that was kind of a disaster, to be honest.

But play dates are not our best scene. In fact, I’m pretty sure I started taking Jack to early intervention because of a play date.

The memory is hazy; something about a roomful of toddlers running and laughing, while 18-month old Jack sat in the corner of the kitchen and traced the same grout line with his finger over and over.

Hazy, yet still raw.

But after I read your invitation, I agreed to bring Jack over for an hour or so after school. We are trying to increase his social circle so it’s wider than our puppy and the couch, and this seemed as good a time as any to start.

Jack, however, did not agree.

He was furious when I told him about it. I barely got him in the car, and then he kicked my seat and screamed for the entire two-mile drive to your house.

“I don’t PLAY. For I don’t KNOW HIM. TAKE ME HOME!

When we pulled into your driveway, I told him all we had to do was walk up to the door and give you the small purple crocus I’d bought as a little gift. That was all. And if he wasn’t feeling better and more playful and polite after we did that, we could get back into the car and go.

I walked to the door, clutching the wilted flower and stopping every three steps to whisper-scream at him to stop complaining and hurry up. Just as we reached your front steps, he decided he’d hide in the bushes while I rang the doorbell.

“There are STILL CHRISTMAS LIGHTS. On these BUSHES! It is APRIL—“

Jack! Be quiet.”

Just then, your daughter Masho opened the door and your three dogs sprinted out, excited. They ran right to Jack where he was standing in the bushes, and he screamed the biggest swear word in the world at the top of his voice. I’m not sure if you heard it, but it rhymes with smother-lucker.

Usually before I take Jack somewhere new, I like to warn people a little about what to expect—how he can get overwhelmed pretty quickly and he can seem very, very rude.

I should have warned you he’s in a phase where he swears a lot right now. We’re working on it.

Masho ran after the dogs because they were headed to the road, and then Asaminew ran after her. Jack was shrieking and clutching fistfuls of my shirt in his hands. But you just smiled at me and said calmly, “Let’s see if we can get them all inside.”

So we corralled Asaminew and Jack and the dogs and lured them back into the house with the promise of a snack.

What’s that game called? The one where you chase a mouse or something around and try to bonk it with a mallet? Whack-a-mole. That’s it. That’s exactly what it’s like when I bring Jack to a new place, except minus the mallet.

He bounces and hops from one object to another; from the chess set to the radio to the buttons on the stove. At some point, he usually wanders upstairs to poke around in the closets. Meanwhile, I bounce and hop right behind him, trying to get him to settle down. It’s so much fun!

I should have warned you about that—the Whack-a-mole thing.

I had just started to relax a little when we sat in your pretty kitchen and gave the boys some popcorn. Your two daughters, Masho and Ashereka, were chatting about gymnastics and school, and Asaminew was playing music on his IPad. Every so often he would look to you and announce, “J! Jack starts with J!”

And then Jack, in the spirit of announcements, made his own.

“I am NOT LIKE HIM. I am NOT LIKE ASAMINEW.”

I should have mentioned that Jack feels a little lost right now. He knows about his autism, but he hasn’t exactly made peace with it.

It’s like watching him swim a channel between two islands. He turns his head and looks at the island on the left, the one full of soccer games and birthday parties and Japanese hibachi tables.

Then he turns to the right, and looks at that island. It is full of IEPS. It is full of weighted blankets and anti-anxiety medication and kids who earn things.

He longs for one island, but is diagnosed for the other. He is stuck in the middle, treading water.

I probably should have warned you that I apologize a lot.

I’m sorry, sometimes he kind of lets out this short scream if he hears a sudden noise.

 I’m sorry—no, Jack, don’t touch that!—I’m sorry, he has a thing about rearranging DVD’s.

 Oh, I’m sorry, now he’s in your refrigerator.

I don’t even know what or who I’m sorry for some days.

That he has autism?

Or that he has anxiety and is easily startled?

Maybe that he doesn’t really grasp social rules or norms?

And when I’m not apologizing, I’m trying to explain.

He had a long day.

He’s taking standardized testing and his schedule was off and he hid under the desk at school during math.

He knows he has autism but he doesn’t like it and we’re trying to show him this is not a bad thing but for some reason he just thinks kids with autism earn things.

And then the ubiquitous explanation; the universal phrase every single autism parent knows by heart.

We’re working on it.

But the truth is, I am sick the explanations. They feel like little more than a flimsy Band-aid on top of a fresh wound.

I can social-story him until I am as blue as a Smurf. I can warn him that if he curses again or knocks over the chess set, we will leave right away. I can tell him that it hurts other people’s feelings when he’s rude, and that the polite thing to do on a play date is play.

But it’s as though all those social stories fly right out of his head the second we cross the threshold, like so many mosquitos taking flight.

“Asaminew EARNS THINGS. I do not EARN.”

You were unfazed. You walked to a cabinet and took out Asaminew’s token book and flipped it open. Because like me, you live with and along and beneath spectrum disorder; you understand the Herculean task of just getting a young boy through through the day. Like me, you laugh and love and cry and work.

Jack leaned toward you. He traced the outline of a token with his finger.

“Does he like it for to earn?” He asked you in his unusual speech.

“Oh, yes, Jack. He loves to earn.”

Watching your heads bent over the book, I decided that all of the swearing and the sweating and the apologies and the explanations are worth it, if Jack can begin to understand he doesn’t have to choose between the two islands.

He just has to keep swimming.

One day, maybe he’ll bring his head above water and look off into the distance.

He will squint into the sun, and see that the islands are actually connected in the middle. Together they make one long, beautiful stretch of land.

And on this land–on this huge, lively, crowded land full of normal and not-normal and autism and tokens and Christmas lights in April–is where he belongs.

Best,

Carrie

P.S. I am really sorry about the way Jack whisper-screamed, “Why? Does Asimenew have TEETH? I thought they didn’t EAT in AFRICA.” when we were getting into the car.

We’re working on it.

Asaminew, Marso, and Ashreka

Asaminew, Masho, and Ashereka