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

My Name is Carrie, and I Medicate My Son

My 10-year old son has autism. And we give him anti-anxiety medicine every day.

If someone had told me fifteen years ago—back when I was a smart, chic, kind of fit twenty-something newlywed—that my new husband Joe and I would one day give our child a tiny white pill every night, well, I might have laughed.

I mean, people who medicate their children are lazy. Everyone knows that.

They turn to pills and syrupy liquids because they don’t feel like trying anything else first.

We live in a society that is dependent on pharmaceuticals, and parents who give their kids medicine are one more step in the pill-popping downfall of our culture.

It is the easy way out.

Well, I can tell you that it wasn’t easy. But it was a way out.

Here is what I know about anxiety: it is interruption and interference. It is intrusion.

It is an insidious, slithering snake.

It is barking dogs and static on the radio and nighttime waking and middle-of-the-day wetting.

It is fear. It is irrational. And it ruthlessly stalks my son.

Jack’s anxiety first started in the spring of 2011, when he was six. It was like being hit with a ton of bricks–he was here one day and gone the next.

One day, we had a mildly repetitive, somewhat obsessive little boy, and then he woke up the next morning and started talking to himself and mumbling about wanting to eat his friends and screaming that the wind chill factor was going to make him die. He kept saying babies were going to paint him blue.

He was afraid to go to the bathroom. He was afraid to go outside. He was afraid of dogs and stop signs and things that were orange.

He stopped sleeping and he never, ever smiled or laughed.

Joe and I were completely blindsided. We had no idea that anxiety is autism’s sneaky sidekick; that the two travel in pairs like partners in crime. But then again, we thought Jack would outgrow his spectrum disorder diagnosis by kindergarten, so really, what do we know?

We bought a weighted blanket because all the research said weighted blankets are great for reducing anxiety.

It didn’t work.

We re-painted the room he shares with his three brothers a deep, rich navy because we hoped it would calm him, and make him feel as though he was in a soothing cocoon during the night.

It didn’t work.

We tried the Wilbarger brushing technique. We bought a huge box of these white, soft brushes that fit in the palm of your hand, and a dozen times a day we would lightly stroke his limbs and his torso. He loved it.

But it didn’t work. And after a few weeks his younger brother, Henry, started using the brushes to comb his hair.

We did joint compression and massages, breathing techniques and a low-sugar diet.

None of it worked.

Still Jack was terrified of the wind chill and babies painting him blue. Still, he talked to himself and asked to eat his friends and lurked around the corners of the house like a stranger within our own family.

Maybe the worst part was Jack couldn’t even explain what was happening. Over and over we begged him to tell us who he was talking to, why he was so afraid, how to make him feel better, but he could not ask for help.

It was as though he was locked in his own psychological prison, without so much as a file in a cake to break out.

I wept every day.

After two months, the doctor gently suggested it was time to try medication, and so we did.

And it worked. Slowly, Jack returned to us. Slowly, he smiled when he saw his favorite cartoon and stopped having accidents because he was afraid of the water in the toilet. He didn’t shriek and cover his ears when he saw a baby in a stroller.

That was four years ago. And since then, we never once changed the prescription or the dosage, even though Jack is a good forty pounds heavier and at least a foot taller. Then last summer we decided to stop it altogether.

But over the past two months, Joe and I have noticed some changes; some differences in Jack’s demeanor and his movements and his sleeping.

You know when you’re wearing a shirt that doesn’t fit quite right? Maybe the sleeves are too short or the fabric is too scratchy or the collar is stiff. But you’ve already left for school or work or your meeting or the gym and it’s too late to go back and change, so you just stick it out for the day.

And for the entire day, this shirt nags at you. You tug at the sleeves and pull at the collar. You can’t concentrate. You feel irritated and all you can think about is taking it off the second you get home.

That’s exactly how Jack looks. He looks like his shirt doesn’t fit quite right. Only instead of a shirt, it’s his skin. And he can’t go home at the end of the day and take it off; he has to wear it for his whole life.

He talks incessantly about getting stuck in a time machine. He’s afraid he’ll be transported back to colonial times and the time machine will break or he’ll forget how to work it and he’ll have to stay there without us.

He won’t go outside because he’s afraid he will fall down in the snow and not be able to get up. And when we tell him he will be able to get up himself, and if he isn’t he can call us and we will help him, he insists we won’t be able to hear him.

He can’t perform the simplest, every day task—things he used to do easily, like brushing his teeth, pouring his own cereal, taking his homework out of his red backpack—without screeching about how he can’t do it, it’s too hard for him, he is scared.

He fidgets and he twitches and he wrings his hands all day long. If he’s sitting, he bends over at the waist and rubs his palms down the length of his thighs.

He doesn’t smile easily, but every so often he laughs maniacally at a joke no one in the room has told.

He talks to himself.

He is not sleeping.

He is afraid.

His prison is back.

This time, there are no more rooms to paint. Jack can’t stop jumping and flapping long enough for us to use the brushes, and he complains the weighted blanket is too hot.

When you live alongside autism, there are a lot of firsts–momentous milestones we never thought we’d reach.  And  every once in a while, I like take them out and hold them up to the light like rare, precious jewels.

His first word.

His first sentence.

His first real two-armed hug, and the first time he ate a piece of salmon.

The first time he lost his smile.

The first day he got it back.

And then, about a week ago, the first time he asked me for help.

“Please be next to me. In this bed. I can’t stop it for thinking about the time machines.”

If I had my own time machine, I would travel back to my young newlywed self. I would loop my arm through hers and bend my head close. And I would ask her not to judge her future, because she has yet to walk in her own shoes.

She has yet to meet a tender, precious, funny boy named Jack.

She has yet to imagine the rich, dusty purple of a Saturday or Sunday morning’s brilliant yellow.

She has not yet held the fate of a child’s joy in the palm of her hand like the most fragile, breathtaking butterfly.

She has yet to hear the softest, saddest whisper in the silence of a navy blue room.

“My brain. My brain. It is moving fast. It feels not right.”

She has yet to try and melt his snow.

We have refilled the prescription. And two nights ago, I shook the small amber vial and gave Jack his first tiny white pill. I watched him drink it down with a mouthful of water. And then I prayed.

I prayed it would help to bring him home, just like it did the first time.

Six-year old Jack.

Six-year old Jack.

When Bad Things Happen

Dear God,

Sometimes, bad things happen. Things like not getting a promotion you wanted or a hearing a diagnosis you didn’t, car trouble or bad weather or divorce.

And then one day, something really, really bad happens. Something so bad, it makes you wonder why you ever thought anything else in your life was bad.

Last week, a young mother in our town and and her two little girls were found dead in their own home from gunshot wounds. It has since been ruled a murder-suicide.

Our little community was stunned, and like a moth drawn to a bright, burning flame, my mind returned again and again to the most awful questions.

Did the little girls know what was happening?

Did they cry?

Were they afraid?

Or were they blissfully unaware until the very last second?

Mostly, I just wondered why. Why would a mother do this?

Every time I thought about it, my stomach felt fluttery, as though there was the tiniest bird inside my ribcage.

Where was I?

Where was I when, less than two miles from my house, a young mother was so distraught, so scared and fearful and determined, that she picked up a gun and pointed it?

Was I getting my hair cut?

Was I at Hannaford’s, trying to find ripe avocados because all of a sudden Jack loves guacamole?

Was I putting a stamp on my nephew’s birthday card or ordering his present from Amazon?

My God, what are you trying to tell us?

What is the lesson here? Is it about compassion and forgiveness?

Or, like flowers in the breeze, are you trying to turn our heads towards political problems like gun control and domestic violence and mental illness?

When I checked my e-mail on the next morning, there was a message from both the superintendent of our district and the principal of the elementary school. Both said things about counselors and teams and tragedy.

That’s when it dawned on me: we were going to have to tell the kids. Up until that point, my husband Joe and I had been talking in hushed whispers when they were all occupied, and furtively checking our phones for news updates.

But throughout the day, the pieces fell into place. We realized our third-grader, Charlie, knew the older daughter because they were in class together for both first and second grade.

For two years they shared a lunch period and art class, field day and holiday celebrations. They sat in the same room month after month, as the seasons outside the window changed from a rich yellow fall to cool blue winter and back again to a wet green spring.

How were we going to tell our kids all of this? How to tell 9-year old Charlie that, for a girl named Katy, there would be no more seasons?

Then there’s Jack. Oh, Jack. Explaining murder-suicide to my 10-year old son felt impossible. Between autism and his anxiety, I could not imagine his reaction.

I mean, right now he’s obsessed with the idea of a time machine transporting him back to Colonial times, and he’ll lose the time machine and never get back to us and have to live without his family for the rest of his life.

And when he’s not talking about the time machine, he’s upset because the water in the toilet is too blue, or that it might rain, or that a poisonous spider in Brazil might swim over to America and bite him.

But don’t worry, we figured it out.

Because Joe and I are experienced autism parents with our fingers on the pulse of spectrum disorder, we approached the situation with great consideration and concern. We gave the matter tremendous thought, and in the end we made a mature, responsible decision.

We didn’t tell him.

It’s not as bad as it sounds. I mean, we didn’t exactly exclude him. He’d been sick with the stomach bug all day anyway, and he seemed pretty out of sorts already. We just waited until he was zoned out in front of a Disney movie up in our bedroom, and then Joe and I called the other four kids to the kitchen for a family meeting.

“What? Shouldn’t we ask Jack—“

“Ssshhh! No! I mean, Jack is tired. We want to talk to just you guys for now.”

We kept it simple. We told them they were safe, that there was some kind of accident in town and a mother and her two little girls had died.

“Katy died? But I just saw her!” Charlie looked to Joe and then back to me.

“I know, buddy,” Joe said quietly. “It’s a terrible thing.”

Afterwards, we felt satisfied that we handled it as best anyone could handle something like this. But we could only keep the lid on things for so long.

The next day, as soon as he got off the bus, Jack charged into the kitchen.

“I heard today. A mom. She shot herself. And she shot her girls.”

I winced. “Shhh, Jack let’s be quieter.”

Charlie looked at me with his eyes wide open. His eyes are the deepest, darkest brown and some days, they make my heart ache.

“It’s true? That’s what happened?”

“Yes.” I admitted quietly. “It’s true.”

“But why? Why would a mother do that?”

Once again we sat at the kitchen counter, this time just Jack and Charlie and I. Delicately, I danced around topics like mental illness and depression and guns as though I was circling a bonfire.

“Her head,” Jack said, “did not want her heart to live anymore.”

“But how could she?”

“Charlie, I don’t have any answers, I’m sorry—“

“But together. They are for together now.”

I felt like I was trying to manage two very different conversations at the same time.

“Yes, Jack, I guess that’s true.”

“Mom, do you think Katy’s in heaven?”

“Yes, Charlie, I do,” I said slowly. “I think they are all in heaven.”

“It is for now God. He will know.” And with that, Jack jumped off the stool and walked out of the room, leaving Charlie and I to stare at at each other sadly.

For the rest of the week I watched them all carefully. I baked chocolate chip cookies, and I made a point to stay off of my computer and stop checking Facebook on my phone once they were home from school. I leaned in close when they talked.

They never once asked any more about it, but Charlie showed some signs of stress.

On Wednesday afternoon we couldn’t find our puppy for a few minutes, and he started to jump up and down frantically.

“He’s dead. I know it. Wolfie’s dead!”

The next day when he got off the bus, he tugged on my arm. I bent down so he could whisper in my ear.

“I was scared. That when we came home from school you would be dead, that someone would have shot you.”

And on Thursday, maybe the most heartbreaking, tangible thing.

After dinner, Charlie came in where I was sitting in our little office, and he climbed into my lap. He hardly ever climbs into my lap anymore.

He told me how at school that day, he’d found a crumpled up piece of paper in the hallway, and when he’d opened it, it had her name on  it.

“Katy. It said Katy.”

“Oh, honey,” I said as my own eyes filled.

I did the only thing I could think to do. Sitting together, Charlie and I reached out and put our fingers towards the hot flame. We brought a young sweet girl back to life, if only for the briefest moment.

“Charlie-bear, what was Katy like? What do you remember about her?”

“She was so fast. She could run and run. And one time, I saw her in the gym with her little sister, and she was swinging her around and around like she was as light as a feather.”

For just a moment, we felt her heat. We watched her run on the playground and clasp her sister’s hand. We read her handwriting on a piece of bright white paper.

My God, I see now. Some things are not meant for us to understand. But we still must talk about the un-talkable; guns and sadness and little girls who run so fast, but are gone too soon.

From the darkness, we must grow our own wings.

“Charlie, I am sorry you are so sad.”

“I know. I just try to think of what Jack said the other day. That helps me.” He slid off my lap and walked out of the room.

What Jack said? I racked my brain, trying to remember what Jack had told his little brother.

I traced the thread of conversation when we were sitting at the counter after school. As I remembered, I smiled, although my heart broke just a little more.

It broke a little because I realized how easy it was to forsake him. I didn’t think he was—what? mature enough? smart enough?—to understand. Because of his autism, I underestimated him.

“They are for together.”

But his black and white mind isn’t cluttered with distractions like mental illness and gun control. He is pure, and his truth is a brilliant evergreen.

“Her head didn’t want her heart to live.”

Jack took the collective questions of why and how and when and where out of our hands. He cradled it like a soft baby chick, and placed it gently back where it belongs.

“It is for now God. He will know.”

Jack and Charlie

Jack and Charlie

What Does Autism Awareness Even Mean?

April is Autism Awareness Month.

I’m not sure when this tradition started. Does anyone out there know? I would research it but I’m in the middle of eating a huge, yummy cinnamon roll from Cinnabon and I don’t feel like multi-tasking.

But it’s a curious thing, this awareness.

When my sister and I were kids, we would play a game where we’d say a word over and over again until it lost all of its meaning.

aware aware aware aware aware

Then we’d try to think of as many rhymes as we could.

Aware, despair, somewhere. To stare.

But what does autism awareness really even mean?

I know, it a chance to celebrate unusual, to rejoice in ideas like inclusion and integration and bright, colorful days. It’s an opportunity to educate the public about why our kiddos may throw huge tantrums in Costco or jump up and down in the aisle at the movies. It’s good stuff, this awareness.

When Jack was about nine, he would lock himself in the bathroom at 4:00 every single afternoon and have the most horrific bowel movements I’ve ever seen. He would take all of his clothes off and moan and wail. Then he would run all over the house and make poop-footprints on the floor and splotchy handprints on the walls.

For the entire year, every afternoon at about 3:58, I pictured myself opening our front door, walking outside, and never coming back.

Does this story make you more aware of autism?

Aware, beware, nightmare.

If I tell you how sick of the whole cake thing I am, will you understand autism any better?

Because I am sick of it. I am sick of the ceaseless talk about cake and making of the cake and washing of the pans. Never in my wildest dreams did I ever think I’d say this, but I am sick of cake.

Ever since he announced he wanted to be a baker about six months ago, Jack has full-on perseverated about this topic. I picture his brain like Candyland, only instead of fun candy and characters, there are long, crisscrossing tracks of cupcake tins and tubs of frosting and sprinkles.

But here’s the thing. He’s not getting any better at it. He’s not exactly mastering the art of baking, or even staying with the project long enough for the pans to go into the oven. Basically, he wants to crack the eggs in the beginning and frost the cake at the end.

It is frustrating and painful to hear him talk about something he dreams of, yet have no idea how to give him the tools to accomplish it.

This spring we went to the Caribbean for spring break. And when we landed and were dragging our five kids and our luggage through customs, I saw a family trudging ahead of us in the same line.

There were three young boys, a mother and a father. The dad was wearing a baseball cap. The mom was petite with dark hair, and she was walking very, very closely to one of the boy’s who looked to be around Jack’s age. He hopping up and down and twitching his fingers.

Another autism mom.

I wanted to ask her a million questions.

How old is he? Does he talk? Does he have an aide in school?

Does she wish life was different?

Does she feel overwhelmed and lost and scared and anxious?

Instead I reached out my hand and brushed her shoulder with my fingers.

“Hey, Mama. Long day?”

“Yes,” she smiled. “Very long.”

I caught up with her a few days later. We were staying at the same resort, and one morning she walked over to where I was sitting and watching the kids on the water slide. Without ceremony, she sat in the chair next to mine.

Her name was Melissa, and her middle son was Landon. He has autism. He doesn’t have language, and he loves pot holders. Every day she drives him an hour each way to school.

“Yeah,” she said, her light blue eyes twinkling. “It really sucks sometimes. But I love him more than anything in the world.”

I know we’re lucky, because Jack is considered high-functioning. He talks. He is potty-trained. He can have conversations, as long as it’s about frosting or license plates or Nicki Minaj.

But for others, there is less to celebrate. For some families, autism is little more than an upwards travail.

No cakes. No baking. No words. Sometimes, no sleep.

Aware, impair, unfair.

It is a road no one would choose, and yet there are many, many footprints on the bumpy, messy, uneven path. And high or low or nestled somewhere in between, we all want the same things for the complicated people in our lives.

We want them to know happiness.

We want them to know love. And hope and forgiveness and joy.

We want them to stay safe.

Most of all, we want them to live the life they wish for themselves.

“He did say a word last year,” Melissa said as she got up from her chair. “It was his first word in seven years.”

“Really?” I leaned toward her. “What did he say?”

“He said Mom. He said it on Christmas morning.” And then she walked away to find some sunscreen. Remembering her silhouette in the brilliant sunshine, I know what’s missing in Autism Awareness month.

You are.

Yes, you.

Without you, autism awareness is an exclamation without a point, or a balloon without enough air. It is lacking. Because without you, the breathtakingly unusual person in your life would simply drift—it is you who keeps him or her or them afloat and buoyant.

You make appointments for speech and OT and the neurologist.

You change soaked sheets in the middle of the night or wipe poop off the walls in the afternoon.

You cry yourself to sleep after researching preschools online.

I hear you.

I see you.

You are not alone.

You cut fruit for a salad for the nine-thousandth four hundred and fifty-second time, even though the person at your table refused to try even a little bite the first nine-thousand four hundred and fifty-first times.

Aware, unfair, ripe pear.

You are a child who feels unheard within your own family, because autism’s voice can be so loud. You watch Disney movies when you’d rather watch Transformers, you listen to hours of Minecraft, you eat pink camouflage cake on your twelfth birthday.

You are not invisible.

You stand in church next to a tall, gangly boy in a red jacket and let him wind his fingers through your long, wavy hair because you know this keeps him calm.

Aware, beware, long hair.

You are trying so hard to hold on to your marriage.

You are trying to make people understand.

You feel like you could literally go crazy and tear out your own hair at the injustice of it all. And if you have to listen to that dumb puppet Elmo singing one more nanosecond, you just might run right out the door.

You wish there was a crystal ball to tell you how this will all turn out.

You can’t decide if you should have another baby.

You wish he would sleep.

You wish she would talk.

You are tired and scared.

You are taking it day by day, night by night—sometimes minute by minute.

You are the front line and the middle march and the last hope.

Aware, threadbare.

Yet even on the bleakest days, your heart can soar with hope and love and pride. Maybe it’s a single new word or a bite of pizza; maybe it’s a full night of sleep or a trip to the grocery store without a meltdown. But it’s there; your very own autism awareness.

You are an autism mother and father, brother and sister. An autism grandma and grandpa and cousin and aunt and neighbor and friend. And if I could, I would send you a warm cinnamon roll with lots and lots of frosting.

But I can’t, so instead I will tell you a little secret: because of you, I reach into the cabinet for the cake mix and tell my son to take out the pans.

Aware, bakeware, to share.

This April, I’d like to do more than just increase awareness about tantrums and speech delays. I’d like to honor those people behind the people, the ones who work every day to keep their balloons aloft.

How about you do it with me? How about you put the name, and maybe a picture, of a special person who handles the daily care of an unusual person with grace and compassion in the comments below, or here on Facebook?

I’ll go first.

For Melissa. On Christmas day and always, you are an autism mom.

Melissa and her family.

Melissa and her family.

Raising a Tween Is Hard

Every year I write each of my children a letter on their birthday. These letters describe the person they are at that particular age; their likes and dislikes, favorite activities, and overall temperament. The following is an excerpt from the letter I wrote my oldest son when he turned twelve yesterday.

Dear Joey,

The day you turned five I looked at Daddy and said, “I can’t believe he’s five.”

He did that head-nodding thing he usually does when he agrees with you. You know the one he does where he kind of closes his eyes?  And then he said, “I know, but I’m dreading six. Six feels really big to me, like he’ll be such a big boy.”

And now, twelve.

Your face has not changed one bit. I’m serious. You look exactly the same as you did when you were a baby or a toddler or a little boy walking into kindergarten. You’re just taller. And now your feet are bigger than mine.

You are the only one of our kids who has carried your nickname past toddlerhood. Boochie, or sometimes Buca.

You order from the adult menu whenever we go to a restaurant. Your favorite is Chinese food.

Do you remember Piffy?  The dragon who lived in the palm of your hand? You told me about him when you were four years old. You were so serious. You stood in the kitchen and solemnly spread your fingers open.

“See, Mommy? He lives in here, in my hand.”

And whenever we were driving somewhere, like the grocery store or church or to school, Piffy rode behind us in his own sports car.

You played basketball and baseball this year, and you ran on the Special Olympics track team with Jack. He wouldn’t do it until you agreed to do it, too.

People ask me all the time if you are more empathetic because you have a brother with autism. But to me, empathy somehow implies that you feel bad for Jack, and I don’t think you do. I think you worry about him and you wonder about him and you love him. You eat the cakes he bakes and when he needs you to run fast and far around the track, you run with him.

You are very attached to your three brothers and one sister, and they to you, especially nine-year old Charlie. I think this has something to do with Jack’s autism, but I can’t quite put my finger on why or how.

As soon as Charlie could talk, it was, “Where Jo-Jo? Where he be?”

Now, all day long, he asks, “Where’s Joey?”

“When’s Joey getting home?”

Or, “What time will Joey be back?”

It’s as if you are his anchor. He has to sit near you at dinner and the movies and church. He will switch the plates around at the table to be closer to you. He has to taste your French Fries, your lemonade, your Halloween candy. Nothing is real for Charlie until he tells it to his “Jo-Jo”.

Sometimes I wonder what it’s like to have someone adore you like this. I imagine it’s exhausting. Yet you handle it with a grace I am certain I do not possess.

You love Transformers and Legos and Minecraft.

You only want to wear athletic pants, and you try to get away without wearing a coat even when it’s freezing out.

You are one of the funniest people I know.

For the most part, you are very, very easygoing. Sometimes I think of you as a little duckling swimming in a wide, cool pond. All of life’s demands roll off of your sleek feathers and bounce into the water. But I worry that maybe underneath the smooth surface, you are paddling and paddling like crazy, all the while trying not to make any waves.

And lately, there is a subtle shift between us. It feels as though the ground is moving oh-so-slightly beneath my feet, the way I imagine the earth’s plates do when they’re preparing for an earthquake.

We argue more. You can be sullen. You sigh a lot and it makes me crazy.

One cold night in late November, we were arguing about your messy homework. I know, I know—you  didn’t think it was messy, but I did. I wanted you to do it over.

We escalated until we were standing within a foot of each other, screaming. Finally I leaned close to your face, so our noses were almost touching, and said meanly, “Guess what. I am the mother and you are the child. You do as I say. Now go to your room before I lose my mind.”

You turned on your heel and stomped up the stairs. Fuming, I went back to cooking dinner.

About a half our later Daddy and I called everyone to the table to eat. We were having your brother Henry’s favorite, sausage kale pasta.  We called and called and you never came, even after all the kids had sat down at their places.

Daddy and I looked at each other. Where is he?

We scoured every inch of the house, calling your name. Under the beds, behind the shower curtain, in the big storage area in the play room. Your brothers and sister were frantic, crying and shouting for you over and over.

“Joey! Where are you?”

Your jacket was still on its hook and your shoes were still lying on the mat where you’d kicked them off earlier that afternoon.

I went outside. It was snowing lightly, and I looked everywhere for your footprints on the driveway or the lawn. I looked for a stranger’s footprints. Nothing.

Boochie, I can’t even being to describe how I felt the entire time we were looking. I felt like someone was squeezing my stomach in their fist. Not punching it, but squeezing it—tighter and tighter until I could barely breathe.

All of the awful stories I’d ever read were racing through my head; stories about kids abducted from their own home, kids who suffocated in the trunks of cars or hampers or curled up in ottomans, kids who walked down the driveway on their own and were never seen again.

Did he run away?

I ran back into the house and met Daddy in the upstairs hallway. He had the phone in his hand, ready to call—who? Who do you call when your child is missing and you think he ran away because you yelled at him but his jacket and shoes are still in the mudroom where he put them after school? The police, I guess.

Just then, we heard a door slide open.

All that time, you’d been hiding in the closet in your room. You came out, sobbing.

See, buddy, there is all this stuff online and in the library and the bookstore about how to swaddle a baby and change a diaper and handle a picky eater and send a clingy child off to preschool. But there is very little written or spoken about what to do when you and your tween son have an argument and he hides in his closet because he’s embarrassed and worried and sad.

Some days, I am lost too. Some days, I would like to hide in the closet.

Buca, my time left with you at home feels so short. Six years until you graduate from high school, and maybe head out into the world on your own, whether to college or to trade school or to travel.

How many more times will I feel your warm forehead with my lips to see if your temperature is high?

How many more times will I remind you to wear your coat? (Probably a million, I know.)

How many more chances to I have to tell you to say no if someone offers you marijuana or heroin?

Or to tell you that you should always, always call us for a ride home, no matter where you are?

How much longer do I have to teach you all the lessons I want to teach?

Last week I asked you what kind of cake you wanted this year. One from the bakery with a picture of a Transformer on it? Or an ice cream one from Dairy Queen?

You and Jack had just walked in from the bus together. Jack was standing at the cabinet with his hand in a bag of popcorn.

“This year, I want a special Duff cake,” you said, referring to the box of cake mixes the Ace of Cake baker sent us a few weeks ago.

You walked over to your brother, and slung your arm around his shoulder. “Okay? Will you make me one of your cakes?”

“Yes, I know. I know. The pink one. Camouflage.”

“Jack,” you said gamely, as if every 12-year old in the world dreams of nothing but a pink camouflage cake for their birthday, “That sounds great.”

And I felt that stomach-squeezing thing again, kind of like when I couldn’t find you. But you were right in front of me.

See Boochie, when you are a mother, the tender combination of love and fear and pain and regret feels exactly the same. It feels like someone is squeezing me with their strongest hands, until my breath is tight and small.

It feels like pride and worry and the slipping of time all mixed together.

It feels like breathless hope.

I hope you know that you will always be my baby.

I hope the pressure of being normal in a family with not-normal doesn’t make you swim in circles.

I hope you enjoy every bite of your pink and white camouflage cake.

I hope you never hide from me again, even if it’s no further than your own closet.

Mostly, I hope you will always have a tiny dragon who lives in the palm of your hand.

(Note: Before I posted this, I had Joey read it over to make sure he was okay with it. He reminded me that Piffy’s sports car was red.)

Not Your Average Joe

Not Your Average Joe

Joey and Charlie, always together.

Joey and Charlie, always together.