Autism and the Gift of a Metaphor

There were fingerprints all over the screen, and the NBA Finals game was about to start. I tried to scrub them off, but they were sticky.

“Jack, this is gross. You’ve got to stop touching the screen, especially after you eat those cookie balls.”

He wouldn’t acknowledge me, except to parrot back a few words as if to mollify my frustration.

Our television is raised up fairly high, and Jack, my eleven year old autistic son, has been secretly smuggling chairs into the living room in order to get high enough to touch the top of it. Part of that, I suspect, is an attempt to mimic Arlo from Pixar’s The Good Dinosaur, who reaches up high with his foot and says, “I’m gonna make my mark.”

But there’s more to the mystery than that. The fact is, our boy has been bringing a little extra OCD to the autism party as of late. He refuses to enter the special needs room at church. He gets frantic, kicking and screaming with a “there’s-a-great-white-shark-in-the-room” kind of terror. And at home, he melts down at our gentlest prodding to go on a bike ride, or to do anything, really, that he doesn’t want to do. The screaming that follows the words “back yard” must raise eyebrows in the neighborhood from time to time. He won’t touch my phone (he’s scared of that, too), and now he won’t even touch some of his treasured laminated pictures that literally line our bookshelves. Yet he will touch the TV screen. Often. Just another puzzle…

Seasons like these can be draining, because the boy won’t give an inch. He would fight every battle if we let him. We have to pick where to aim our energies. It can be a bit depressing. The world requires flexibility of its citizens, and he is more inflexible today than he’s ever been. What will all this mean for his future?

But then, these seasons contain reassuring moments, too. Case in point: on Friday, I came home with my daughters in the late afternoon, and Jack and Sara were alone in the house. The soundtrack from The Good Dinosaur was filling the house, and Jack was curled up beneath his favorite blanket with his new penguin book. He was in his happiest place, and his face showed it. When he saw me, he beamed as if to say, “Dad you’re home! Now I have everything I will ever need.” And it made me think of the first penguin book and the moment three years ago when everything changed. He wore the same smile.

I saw something else the next day, too. Through open door in my bedroom, I could see Jack sneaking the chair beneath the tv, and climbing on it. There was no movie playing, only various pictures floating slowly upward. Our AppleTV screensaver was set to National Geographic wildlife images. Jack reached up with one finger. The screen distorted to purple around the spot he touched. Irritation flashed in me. He’s going to ruin that screen, I thought, sitting up.

Then I saw it. A penguin. He was touching all the penguin pictures.

I sat back down and closed my mouth. In a season of such sticky obsessions and meltdowns, the boy still draws strength and peace from his penguins. It started with the original Jack and Daddy book. He remembers it as well as I do. It’s why he has been keeping this new book close to him, and why he’s asking to watch the penguin documentaries on Netflix. We are a story family, and penguins were Jack’s very first metaphor. They stand for me and him. For us, together. More broadly, penguins represent family.

I’m writing about this today to remind myself how much it all matters. I am speaking to my own soul. True, right now, the horizon doesn’t look especially bright. Jack is eleven. Soon he will be a teenager. His intensifying behaviors are going to complicate his transition into adolescence. All our concerns about his future feel more solid than ever.

And yet, our greatest concern has been assuaged once and for all: Jack is not oblivious to his family’s affection. Rather, he is still captivated by it. He loves us and we love him. He may not be able to tell us in sentences, but he can show us with a picture.

So there goes my son now, pushing his chair further into the living room and deeper into life. We don’t know what storms this season might bring, but our boy is not alone. He is armed with the power of a metaphor, and with it, he will find a way to stand tall. He will make his mark.

 


Feature image courtesy of the always awesome Anne Nunn Photographers.

To Love a Tow Truck

If you’ve read anything I’ve written this year, you know that Jack, my autistic eleven year old, loves the movie Cars 2, and I don’t. I’m a grown man and a Pixar apologist (there should be a badge for people like me), but I cannot abide the studio’s version of The Fast and The Furious. The story is jumbled and lame, the noise is loud and unrelenting, and the rusty protagonist drives me backwards insane.

I grew up in East Texas, so you’d think I had some appreciation for Mater the Tow Truck, but so help me, the man who voices him, Larry the Cable Guy, strikes me as decidedly unfunny. This character grates on me from the beginning, and he does not let up for the entire ninety minutes. It’s exhausting.

But oh, my dear son . . . he disagrees. Jack adores Mater, and he has watched his bumbling heroics hundreds of times without ever tiring of it.

The English writer G.K. Chesterton maintained that, “Part of God’s infinity is manifested in a little child’s propensity to exalt in the monotonous.”

A child glories for weeks in his only two knock-knock jokes. He gets tossed in the air and laughs and says, “do it again!” God, too, makes the sun rise and says, “do it again!”

Adults though? Dad, especially? Monotony is hard for us. It is the opposite of adventure. There are no twists, no surprises, no opportunity for Keizer Soze’s hand to un-cripple itself or for Jack Buck to call, “I don’t believe what I just saw!” Monotony is wonder-less.

Except there they are: our children, especially our children on the spectrum. There they are, watching the same tow truck bumble his way around the world as the same accidental spy, and get the same inexplicable knighthood in the end. And even after the five-hundredth viewing, there is fairy-tale affection in their eyes.

Why do our children delight? Is it that their young minds are so limited and their tastes so unrefined? Are they just bored and don’t even realize it?

Or maybe we are the problem. Maybe our culture is simply addicted to novelty.

Maybe we get bored so easily because our imaginations have become petulant tyrants, suspicious of routine, and demanding newness all the time.

I’ll be honest, even the word “routine” sucks the imagination right out of me. And that, friends, is my problem, not my son’s.

For Jack, routine is more than a necessity. It is a comfort. For my son, repetition is not the droning, looping script that I hear, but a room of friendly voices, casting the the place in warm tones, classic jokes, and action sequences that never stop being awesome.

Parents, hear me: we need to slow down and get younger. We need to let our children teach us from time to time. They still believe in pixie dust, in spy cars, and in houses that fly, and the main reason we don’t is we’re too easily exasperated. My old headmaster used to say, “if you’re bored, it’s because you’re boring.” I think he was right. And just because we’re boring and cynical doesn’t mean ours is the better way.

There are treasures in slowness. There is beauty in the retellings. There is wonder even in predictability.

I’m trying to learn it. I’m trying to make peace with Jack’s looping obsessions. I’m even trying to like Cars 2. Really. And you know what I’ve discovered? The Italian racer, Francesco, is actually quite hilarious. And even Mater . . . well, there was this one moment when he asks about a drink for McQueen, and he misunderstands Guido, and . . . I laughed.

I’m never going to be a big fan of this movie, or of this character. He will never rank next to Sheriff Woody or Mr. Incredible or Remi the Rat or Carl Frederickson. But through repeated viewings, I am starting to at least see what Jack sees in him, if only just a little. The awkward misfit just wants to do what’s right; to have fun, and be a hero.

If Mater’s antics serve to reinforce those ideals, I can live with that. If monotonous viewings of a mediocre film cause my son’s mind to explode with possibility, then I will sit next to him and squint my eyes to find the wonder. I will never have the infinite patience of God Himself, but I think I can re-learn some measure of child-likeness. And that is appropriate, for as we know, the kingdom of heaven does not belong to the most refined among us, but to the wide-eyed and hopeful. To children.

Dear Perfection (A Letter on Valentine’s Day)

Dear Perfection,

It’s an honor, first of all. I mean, there are so many of us who are online begging for your attention, so it means a lot that you would read this. I’m talking about the Valentine pictures, friendaversary videos, and those filtered collages of vacations we actually hated. You know what the good book says, right? “Instagram filters covereth a multitude of sins.”

But more to my point, there are millions of parents out there who are looking for your stamp of approval, and that’s really why I’m bothering you. I see what you’re doing, and we both know it’s not right.

When I think of you, Perfection, I think of Thomas Kinkade paintings. Kinkade is at once maligned and envied.  We mock him for his idyllic cottages by the sea with their pristine puffs of chimney smoke. We roll our eyes and say, “life isn’t like that!”

But then, in the next breath, there we are sharing our own cobblestone collages of our adoring and adorable children. There is no dirt here. There are no pudding hands. There is no perimeter of poorly aimed urine caked to the bathroom floor. Neither are there flashes of cutting sarcasm about half-empty cocoa mugs strewn across the living room, because we would never resort to such measures even if our kids ever forgot anything… assuming of course they drank such unhealthy concoctions. We don’t. They don’t. Because we’re all perfect. Just check out our timelines if you don’t believe us.

Of course you don’t believe us. We don’t believe us, either.

We know the truth about ourselves and our shortcomings. We know the truth about our own parenting: we are all imperfect.

But Perfection, you sly dog, you’ve done something sneaky to stay relevant. You’ve told us everything is yours. You’ve said it’s all perfect: the dirt and the pudding, the receding hairlines, the addictions, the insecurities and all the fears. And it such is a lovely sentiment, like those DOVE commercials where none of the women wants to walk under the “pretty” sign because they don’t think they’re beautiful enough, because they don’t realize that everyone is equally beautiful. Life comes in many shapes and sizes and ages and neurologies and pre-existing conditions and character flaws and temperaments. Some have jobs that bring home more bacon and earn more sacred ‘attaboys. “But none of it matters,” you assure us. “You are, all of you, perfect.”

There is, however, a sinkhole beneath that beachside cottage: You are implying that we must have you, Perfection, in order to have value.

You say we must make ourselves worthy of love. God help us, but it is a lie.

Still, we have chased your impossible standards with abandon. We ache for true validation and affection. We offer humble brags about our achievements and we edit our selfies to prove to the world-—and to ourselves-—that we are unblemished enough, even though we know it’s no use. There are unmistakable wrinkles in our foreheads. There is too much sadness in our brows. We know what failures lie behind our acned skin. Calling it perfection leaves us even more empty.

You are the carrot on the string; always before us, but never attained. You tempt but never satisfy.

One day, we’ll all awake to an older, deeper truth that will finally unseat you: there is value already baked inside us. There is a construct of worth that precedes success or failure, youth or atrophy, the flawless and the marred, and that construct cannot be removed by mere human inadequacies. There are fingerprints in our cells—Divine fingerprints—that no amount of brokenness can erase.

On the day of waking, we will remember we are loved.

We are flawed, and yet we are loved.

We are going gray, and we are loved.

We fail hard, and still we are loved.

Our kids sometimes sass us and we sometimes sass them back. We are immature parents, often petty, usually desperate, and almost always clueless. We fall a hundred miles short of your standard, but never short of the worth bestowed upon us by our Father.

I admit, I’m worse than imperfect. I am hopelessly broken and thoroughly incapable of putting myself back together.  That is the plain truth. But I am also fearlessly, eternally, unconditionally embraced. Fully known and fully loved. This is a wonder beyond Kinkadian fantasy; it is true perfection.

So Happy Valentines Day I guess, but we don’t need you anymore.

Regards,

Jason

To Be Worthy of Your Trust (A Letter to Jack)

Dear Jack,

Up until now, I’ve only written you letters on your birthdays, but I’m going to change that, because you might look back on days like yesterday and wonder, “what was that even about?” Well, I’ll tell you.

Mom woke you up at midnight and wouldn’t let you go back to sleep. She pulled you out of bed and led you into the living room where Winnie the Pooh and Tigger entertained you all through night. It was still dark when the three of us got in the van. We didn’t make you put your shirt on, of course, because the van is just as much home as your own bedroom. And when you feel like you’re home, you go shirtless. It’s your thing.

Mom sat next to you in the back in order to keep you awake, but soon she fell asleep. I watched you both in the mirror. Your eyes were open, and your head rested on her shoulder.

You both looked so beautiful. So full of peace.

We drove two hours to that big hospital on the hill. You know the one. When we got inside, a nurse took us into a little exam room and scratched your head with a q-tip and cream that felt like sandpaper. You screamed and kicked and we tried to restrain you. Your eyes were frightened, and your lips were offended. I took your chin in my hands and said, “look at me, son. Look at me. It’s okay. It will only take a minute.”

Your eyes met mine for a moment, and you stopped fighting. You took a breath. You understood me, and you chose to trust us. We have lots of these moments, now. You seem to understand so much of what we say, and even though you can’t respond in kind, you choose to go along with us. It is a pure, sweet faith, but it is weighty, too. It pulls our shoulders low, and makes us remember our naked need for wisdom from beyond.

The nurse put a bunch of sticky nodes all over your head, then you laid down next to mom. She wrapped you in her soft arms under your soft blanket. We told you you could sleep without a shirt, but you said no. I brought out your little blue-glowing pyramid that puffs out sleepy-time smells, then hit repeat on the Monsters University audio story. All the other lights went out.

You were confused. This was not “orange home,” and the hour was not bedtime. We tried to explain it all to you, and I think you might have understood, but just in case, I’ll try again:

The doctors think there might be something going on inside your brain, son.

Something that shouldn’t be going on. They think there must be a reason why your your words have gone away so drastically this year, and why your legs won’t peddle your bike anymore, and… there are just lots of things. Of course, you have autism, but this seems to us like something more.

img_1085-copyThat’s why we keep coming to the hospital. That’s why we put those sticky nodes on your head. We are trying to learn. We are trying to help you. But even the smartest brain doctors aren’t sure where to start, or how many tests to do. It’s easy for a parent to talk big and say, “we’ll do whatever we can to get to the bottom of this,” but the truth is, you’re the one that has to get poked and scratched made to wait in rooms that make you panic. And your mom and I don’t know how far to push with our investigations. How many pokes are too many?

Your bedtime story looped again and again, and you tossed and turned in that blue-soaked room. We prayed with you. We whispered in your ear. You took my hand and pressed it against your eyes, but you would not rest. And I kept wishing you would just take your shirt off, but you wouldn’t do it.

Finally I sat in the rocking chair and prayed silently for God to give you peace. Mom put some lavender on your blanket, and at last, your body went still in her embrace.

I realized then what a wise and healthy thing you had done in keeping your shirt on. You hadn’t felt settled enough to strip it off, because the hospital is not your home. And it should never feel like your home. These tests are not part of your routine.

You are our son, not our science experiment.

I wish I could say there won’t be anymore tests. There will. But if you ever start to feel as comfortable in an exam room as you do in your bedroom, we will have gone too far. I hope you will find a way to say so. I hope you will find the perfect movie quote to alert us to our overwrought efforts. We want to build you a future, son, but not at the expense of your joy. If we are to be worthy of your sacred trust, we will need that wisdom from beyond.

For now, I will tell you what you told yourself when the lights came back on and the test was over: “Well done, Mister Wazowski.” We are proud of you, kid.

 

-Dad

well-done

To Preserve Their Innocence

It’s a crisp evening in small-town Oregon, and the boys and girls of summer are out early, crowding the metal bench in  numerical order from the white numbers on the backs of their navy blue jerseys. Aligned like this, they look like too many birds on a wire. They are first and second graders, and the game is coach-pitch baseball. There is no score-keeping, except the mental tallies running inside the heads of most of the players.

The golden-haired number three–that’s Sam. He’s mine. You can hear his voice above the others, leading the cheer for his comrade at bat: “Let’s go Ezra, let’s go! Let’s go Ezra, let’s go!” They’ll go on like that for every batter, unfettered by the grown up notions of monotony and self-awareness. Their voices sweeten the breeze. You can’t help but smile. When a kid gets a hit, they “Woo-hoo!” If he strikes out, they “Awww. Good try,” and raise up the chant for the next batter.

“I love how they cheer for each other,” I tell Gonzalo, my friend and fellow dad.

“It won’t be like this forever,” he says.

I sigh. He is right. Soon, these innocents will discover the ugly sides of humanity, and even baseball will look different. They will taste betrayal and mockery. They will feel the stings of their own failures. They will find that they do not measure up to anyone’s standards, least of all their own. And then, they will be tempted by jadedness. The ugliness of experience will pollute the evening breeze, and cheering will all die down.

As a dad, my first inclination is to keep my son here on this field of simplicity. I don’t want him to taste the temptations to vanity and lust. Not yet. I don’t want him to learn of the horrors of Auschwitz. Not yet. I don’t want him to find out he is more Clark Kent than Superman, made from the same deformed flesh as the father he still considers indestructible. Not yet.

I swallow, thinking of his sisters. In a month, they will both be teenagers, eyes already wide to humanity. I feel a pang of embarrassment the more they learn. “Yes, this is the world we have all prepared for you. We should have done better. I’m so sorry.” They take it all in, accepting. Knowing. Not as surprised as I would have hoped. The depravity of this world began its desensitizing magic long ago.

If a father’s job is to shield his children, we have all failed already. Their jerseys will be soiled by spots of blood and the stench of regret.

But what if a father’s job is not to prevent brokenness, but to show our children how to be mended? How to admit where life hurts, and to receive the balm of forgiveness and grace? What if a father’s job is to model the process of restoration?

I cannot prevent their hearts from aching, but I can point them toward true healing. I can let them hear my own regrets, and show them my own scars. I can model the words, “please forgive me.” I can teach them prayers of confession, for I am not strong enough or pure enough to overcome the world. There is only One who is. And He waits for them.

I am being mended. If my children will let themselves be mended too, we can all–with gloves in our hands, crutches under our arms, and ice packs at our ankles–limp back out to the diamond, laughing the laugh of the redeemed.

***

Sam is all shoulders at the plate. He swings awkwardly, prompting the coach’s wife to come out and adjust his stance. A little closer to the plate. Bat a little higher. There. He hears his name chanted from the bench, but misses again. The coach has one more ball at his feet. He tosses it. Sam swings.

The ball dribbles down the first base line. He takes off running and kicks up dirt all the way to first base. He is safe. For now. Today is a gift that will not last forever, so I breath in the innocent air and say a prayer about tomorrow.

That Time I Had Coffee with My Two Selves

I like to write early in the morning, provided I can get past my snooze button. As a positive incentive, I started setting my coffee timer to 4:55 AM, because a fresh cup is at least 8.5 times as wonderful as a stale cup. I smelled it when my alarm went off this morning, then dragged myself to the kitchen, filled up my trusty Allan Bros mug (not realizing the pot was already half-empty), and tiptoed into the living room. When I switched the light on, I saw at once that I was not alone. There were two men sitting on the couch, waiting for me. I almost let out a scream until I recognized them. They both looked just like me.

“It’s a good brew,” one of them says. He wears a thin beard, jeans, and an earthy flannel. “But we’re out of half & half.”

The other one shakes his head and takes a sip from his own mug. “Nope, he’s just blind. Sara just picked some up yesterday.” This one’s hair almost looks combed, and he wears khaki pants with a nice blue sweater.

I gape. “Who… what is…”

“Come on, you know us,” Flannel Jay says. “We’re you. The different sides of you. And by the way, I freaking LOVED your last blog post. The letter to Jack? You really put yourself out there.”

I sit down, feeling a bit less panicked. “Okay. Uh, yeah, thanks. I don’t know…” I look over at Sweater Jason and see he is biting his lip. “What did you think?” I ask.

He takes another sip and looks up at the ceiling. Is he unsure of what to say? No, he is just being diplomatic. He has an opinion. He always does.

“I don’t know,” he begins.

Flannel Jay interrupts him. “Don’t say that. You do know. Spit it out.”

Sweater Jason shrugs. “I think you over-shared.”

I nod. “I knew it! I agree with you. I feel like I’ve written about the whole ‘I have trouble with hope’ thing already. Several times, probably. And this last time, it’s like I told the whole world that I still suck in that area.”

“Dude?” Sweater Jason raises an eyebrow.

“Sorry, I shouldn’t say ‘suck’ in a blog post, should I…”

I hear a snort to the left. Flannel Jay has a mouthful of coffee and is trying not to spit it out in laughter. He lifts a finger, swallows, and opens his mouth. “Sorry, but nobody is offended by ‘sucks’ anymore. And even if they are, you’re just being real, dude. People need to connect with… realness.”

“Transparency?” I offer.

“Exactly, but not in a cliché kind of way,” he says.

Sweater Jay slaps his knee. “‘Transparency’ is a cliché whether or not you say ‘not in a cliché kind of way.’ That’s like using the phrase “just saying’” to get social acceptance for a rude comment.” He stands up and starts to pace. I hate it when he gets angsty like this. “Transparency in and of itself is not a good thing.”

“It’s not a bad thing, either,” Flannel Jay counters.

“Right. It’s not. But in that post, you,” and he points to me, “got transparent and even vulnerable about something you’ve supposedly beaten at least three times already. In front of a ton of people. Many of whom are in the congregation where you serve as one of the leaders.”

I slump in my chair. “I know. I know.”

“And you teach on hope all the time. You always used to quote Hebrews 11 about faith being the assurance of things hoped for, and then you say ‘if you don’t have hope, then you can’t have faith.’ You see what I’m getting at?”

Flannel Jay waves his hand. “He gets it. Give him a break.”

But Sweater Jay presses on. “You are called to build up peoples’ faith. But if you are telling them that you yourself don’t have any hope, then…”

“I get it!” I start to yell before Flannel Jay shushes me. We all get quiet for a moment. Then, I hear Jack in the next room. I can tell he’s wide awake and stimming. Specifically, he’s flapping his sun-glasses and duct tape while scripting something. A piece of dialogue from Kung-Fu Panda, I think, but I can’t tell which scene.

“Just admit it,” Flannel Jay whispers at last to his companion. “You want him to write posts about rainbows and butterflies, and how he’s got the joy, joy, joy, joy down in his heart even when he doesn’t. Well, there are real people who read this blog, and they are struggling, too. Some with autism issues, and some with… well anything. And being real is the only way to encourage them.”

“Encouraged?” Sweater Jason asks, looking baffled. “By the fact that he, a pastor, can feel every bit as weak as everyone else? What does that do?”

I’m getting nervous now. The two of them are whispering, but they are clearly upset with each other. I want to diffuse the argument.

“Who wants a bowel of generic Cinnamon Toast Crunch?” I ask.

“Don’t do that! Your wife hates it when you evade conflict with banter,” Flannel Jay says. He’s right. I feel ashamed. “I’ve been defending you here, but you actually need to answer this question. Not for anyone else, maybe, but for you: How does ‘being transparent’ show the hope of the Gospel?”

I put my head in my hands and close my eyes. My companions both fall silent. All I can hear is the sound of my son’s flapping, and a muddy voice that sounds vaguely like Dustin Hoffman as Master Shifu.

And in that moment, I remember the words of Jesus: “Blessed are the poor in Spirit, for theirs is the kingdom of heaven.”

I take a breath, then speak. “If I have stressed my own poverty instead the Hope of the Kingdom–the beauty of Christ Himself–then I am truly sorry. Sometimes I get stuck in my head, and that’s a bad thing, because the answers aren’t in my head.

“But I’m still going to be honest, because He meets me in the honest places. That’s where I find myself being reborn. If I can point people to their own honest places, well… maybe they’ll find Christ there, too. Because that’s where He waits.”

When I open my eyes, my guests are gone. I take another sip of coffee and in a moment, my son runs into the room. He is wearing only his sagging green pajama bottoms and a hyperactive grin: “Daddy tickle me?” he says. It is not really a question.

I pull him into my arms instead, and thank my Father for new beginnings.