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A Letter to My Autistic Son on his 16th Birthday

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Dear Jack,

All birthdays are special, but some are more special than others. The sixteenth birthday is one of the very best ones, because when you turn sixteen, you’re almost done being a kid. And on days like this, a lot of people start to think more about what they might be able to give to the world in order to make it a better place.

I know you see these things in your siblings: Nathan singing and dancing on stage; Sam making everyone laugh with his impressions; Jenna creating amazing artwork; Emily making beautiful things out of words. These are all gifts, kind of like in Encanto. 

Son, you don’t talk very much, but you have gifts, too. Maybe you think you’re like Mirabel in the movie, who didn’t get one. But Mirabel was wrong, because she did have gifts. She had the gift of seeing and understanding other people. That’s how she was able to bring healing to her family. Some gifts aren’t as obvious as others.

You have some obvious gifts that everyone sees. You have joy, for one thing. People see you skipping through the hallways on Sunday mornings with Leeli on her leash, and they smile, because you’re smiling. Your joy spreads. 

But there’s something else, son—a surprising gift that we’re starting to see from you, and we want you to see it, too: Jackson, you are a storyteller. 

Let me tell you why I think this is true. Stories are not just about the characters in the book or on the screen. No, they are really about how those characters connect with us, the people who are watching and reading. They wake up the sleepy parts of our hearts.  You seem to understand this in a very special way.

Let me give you an example. Remember a few weeks ago when we were texting about Kung Fu Panda? You said to me, “You are Monkey because you are funny and I am Po because I am kind.”

This made me very happy for two reasons. First, you understood that you are kind. You see that in yourself, and that is a wonderful thing. It’s another of your gifts, just like joy. But you also recognized what the movie is really about. It’s not just about Po learning Kung Fu. It’s about how he had a good heart, even when nobody believed in him.

Do you see what I mean? Stories are about connection. The more I think about this idea, the more I suspect you’ve always understood it. Like when you related to The Good Dinosaur’s constant anxiety, or when you saw yourself in Mater, not just because he was awkward and you felt awkward, but because he was a hero, and you wanted to be one, too. 

Yes, I think you’ve always understood stories. That should be no surprise, because we are a story family. It’s my favorite piece of our little home culture. But I think you can make them, too. 

Last month, you were doing school work with mom. Your assignment was to use your communication device to tell us all about your favorite place, and to refer to all five of your senses. Here’s what you told us:

“I like going to the beach. I feel nice because I can feel sun and wind on my face. I like to listen to the waves crash on the shore. I like to watch the waves chase each other across the sand. I can smell fish in the air. I can taste the salt in the air, too. I like going to the beach with my favorite people, my family.”

I read that part about the waves chasing each other, and I shook my head in wonder. This is a poem, son. A story poem. As Hiccup said to Toothless, “You never cease to amaze me, bud.” 

Jack, every time you put your thoughts into words like this, you help us connect with you. You bring us into your world so we can know you better. And we love getting to know you better.

You are turning sixteen today, son. You might not be like other adults-in-training, with all their talking and driving and thinking about college. That’s okay with us. But please believe me when I say that you have special gifts to give to the world. We need your joy. We need your kindness. And we need your deep and surprising sense of connection.

Mom and I love you, son. And we are so proud of the story you’ve begun to write. Happy 16th birthday.

Dad

The Things that Make You Brave (A Letter to Jack)

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Dear Jack,

On this day one year ago, your mom and I put you into a hospital gown, and you let us do it. You knew what was coming. We had talked about it for weeks. Then, a nurse came and poked you, and you got sleepy. They wheeled you into another room, and when you got anxious, they read your list of movie titles until you relaxed and sleep came. And for the next weeks, you endured weakness and funny medicine and strange dreams and mystery pains in the back of your head. You didn’t like any of it, but you endured.

It was a strange few months after that. Do you remember the panic attacks that came every night? Do you remember when we moved your brothers out of your room so they could sleep? We may never know if that happened because of your surgery, or if it was an autism thing or something else. But what we do know is this: you made it through that dark season. You emerged, and you showed us the things that make you brave.

People have lots of funny ideas about courage these days. You see it in some of the movies you watch. One idea goes like this: “Courage is having the strength to be who you really are.” And this sounds good to us, because sometimes we all get embarrassed over things that are really just fine. Like when you flap your socks. Some people might not like when you do that, but you don’t care much, and I’m glad you don’t care. You shouldn’t have to care. You should be free to be yourself.

But I don’t think courage is like that most of the time. In fact, most of the time, being ourselves is pretty easy. We know our favorite movies and our favorite foods. We know whether we want to go to parties, or to hang out with our brothers and sisters. We don’t need to be brave to choose those things. We just have to do what’s most comfortable.

Maybe you didn’t think you were brave at all this past year. Remember in those really hard days when you would scream, “I ain’t a coward!” like Arlo in The Good Dinosaur? Maybe you thought that because you were afraid at night, you didn’t have any courage. But you did. You know how I know? Because ever since those dark days, you have have been making so many hard choices. And it’s been awesome to watch.

For example, remember those days last summer, when Mom and miss Beth took you to the bowling alley, to the movie theater, and the mini-golf place? You didn’t want to do those things at first because you really love just being home with your shirt off and your movies on. But your siblings stay home all the time so you can do those things, and this summer, they wanted to go have more adventures. So you chose to go out. And that was a good choice, son. You even started to enjoy yourself.

On one of those outings, mom took you to the trampoline park. Before your surgery, you’d had such a hard time using the left side of your body. But over the months, you had worked hard in OT until you were able to do this. It wasn’t your first choice. It would have been easier to say “no-fank-you” and do what was comfortable. But you made the better choice.

Later that month, we told you we were going on a family vacation. You said no at first. We never go on family vacations, because you like to stay home and relax in the living room. But you relented, and off we went, up the Oregon coast and down the cabin ramp on your scooter. You missed home, but you had a great time.

You also started to enjoy riding lessons more. Friday afternoons are a great time to come home and sit in your favorite chair for hours on end, but every week, you donned your boots and sunglasses and learned to cantor like Cowboy Pete himself. Just look at you go!

Finally, last week, Miss Janae took us to that place with all the Christmas lights. When we approached the “snowless tubing” slide, you kept eying it from around the corner. Your said nothing, but your face said, “Wow, that looks scary, but I really want to try it.” When it was your turn, you almost backed out. Almost. But then, this… You went again and again, laughing all the way.

And there is more, son. So much more. There were baseball games and hikes up mountain ridges and happy trips to the Safeway. You even sat through an entire live musical, Elf Jr, to see your little brother play the part of Michael!

These are the things that make us brave: not that we do what we want to do, but that we do the hard things we are afraid of doing. This is what you did this past year. Instead of settling for just “being yourself,” you sacrificed what you wanted for the sake of others. Instead of doing the comfortable thing, you chose to grow.

Well done, son. I’m proud of you. And I’m humbled by all the things you continue to teach us.

Dad

Like this post? Check out my book, Aching Joy: Following God through the Land of Unanswered Prayer

Shallow Sleep and Slow, Deep Breaths

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It’s early in the morning, and I’m sitting in my living room when I should still be in bed, because Jack’s OCD overtook our night again. This has been happening for weeks now. Our boy is twelve and severely autistic. In recent weeks, he’s been waking up in a panic and running into our bed seeking reassurance that the sequence of his iTunes movies hasn’t changed. We give him that reassurance, but he asks again. And again. He grabs our faces and pulls them to his ear, begging for confirmation.

“One Good Dinosaur?

“Yes, Jack, one is Good Dinosaur. Now let go of me, and go to sleep. Please!”

[Pause.]

“One Good Dinosaur?”

This movie list was something of a revelation a couple months ago. It was a haven for him; a shield of comforting words to deflect the unpredictable world around him. But he’s become dependent on that shield. Now, if he doesn’t hear his words the instant he demands them, he panics. And he wants to hear that repetition at all hours of the day and night.

Thus, the past weeks have been frustrating for my young sons who share a room with him. They have to feed him his lines or else put up with the screeching every evening. It’s been demoralizing for my girls, who often have to take care of him and keep him calm when we’re gone. It’s been exhausting for Sara and I, because we lose hours of sleep trying to console him. And it’s been maddening for Jack, too. He’s probably wondering why he can’t seem to calm down.

We’ve been through some ups and downs with our boy, but I’m not sure we’ve ever seen such unrelenting anxiety. Not for this long, anyway. We’ve never dealt with so much panic.

So what’s going on with him? We don’t know.

He’s twelve, which means he’s got new hormones beginning to pulse through his veins (don’t try and make me say the word, YOU’RE NOT MY MOM!). He also had brain surgery two months ago, and who really knows how much that might be throwing him for a loop?

We ‘re working with some good professionals, and we are all on the case together. Please understand, I haven’t come here today for medical advice, or (God forbid) for pity. We are trusting our doctors, and we’re trusting God. We’ll get through this spell. We always do.

So why am I bothering to tell you all this? Because it’s true, that’s why. And because late on, when I tell you about the good times,  I want you to be able to trust me. Parenting any child, let alone one dealing with severe autism, can be a heavy task. It is beautiful. It is also, at times, terribly difficult.

What good is it, then, to pretend life is binary?

The Twitter Tragedians who trumpet despair are every bit as half-blind as the the happy-clappy Christians who pretend to be “inside-outside-upside-downside happy all the time.” Life is not one dimensional; it is full of tension. The rain falls on the just and the unjust alike. Sometimes it’s an Oregon rain: light and drizzly, with no need for an umbrella. And other times it’s a good, old fashioned Texas downpour, and you get soaked.

We’re pretty drenched right now. That’s just the truth. But we’re not hanging our heads, because we know the clouds will part. We’ve already seen bursts of sunlight, like when Emily, our sixteen year-old daughter, discovered a new coping mechanism for Jack’s meltdowns. It happened last week during an awful panic attack. It was a bad one, and she was barely hanging on herself.

He ran into the living room, screaming at the top of his lungs, “One good dinosaur!”


She caught him and wrapped her arms around him, whispering, “Deep breath.”

He listened to her. He inhaled, then blew out slowly.

“Good,” she said. “What’s next?”

“Two Dragon One!” he cried.

“Deep breath.” He obeyed again. “Good. What’s next?”

“Three Dragon Two!”

“Deep Breath…”

And on she went, all the way to “Fourteen, Up.” (Yes, we added a couple and we’re up to fourteen now, for those keeping score at home.) When she was done, he was calm again.

It was magic. My kids are magic.

So even though I won’t pretend that life is all breakfast peaches and unicorns on a Thomas Kinkade cobblestone porch, I won’t despair, either. We have hope. We’ll find a way. We’ll make it through this.

You’ll make it through your rough patch, too. The first step is to admit where you actually are. Acknowledge the anxiety. Acknowledge the pain. Pray from that place–that throbbing, sore spot. All the best prayers come from there.

And then?

Take a deep breath. You’re going to make it.

A Letter to my Autistic Son on his 12th Birthday

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Dear Jack,

You’re turning twelve today, and that brings me all kinds of feelings. It brings happiness, because you’re growing taller and stronger; not as cute but more handsome. It brings sadness, for all the same reasons. And it brings fear, because we have lots of questions about your future. Last month, though, you showed me something that made me a little less afraid.

Remember your hospital visit in January? Of course you do. It was a pretty big deal. You had a messed up blood vessel that was pushing up against your brain, and that was restricting the movements of your muscles. Over the past year, you had stopped running and riding your bike, stopped writing on paper, and your mouth had stopped forming some of the words you used to say. We think it was all the blood vessel’s fault.

After the doctor told us you should have surgery or else risk losing more muscle control, your mom and I didn’t want to talk about it very much. “Brain” and “surgery” are two very uncomfortable words when you put them together. But you needed to know about it, so we told you plainly what was going to happen. We told you we were taking you to the big hospital in Portland. We said that they would put you to sleep while they cut the back of your head open to fix a problem. And while we told you, you sat in silence, taking it all in.

That’s what you do. You take things in.

You know, son, when you were little, I didn’t try to talk to you very much at all. I didn’t think you were really listening. Mom would talk to you all the time, and I thought she was being silly. I thought she was fooling herself into believing you were able to do more things than you really could. Grown-ups call that denial.

But I was wrong. Mom wasn’t in denial. I was just afraid to believe that you might, in fact, be a lot more capable than I had given you credit for; afraid to think you might tougher and more resilient than I ever expected. I didn’t want to believe those things, because I thought I might find out I was wrong.

Eventually, though, I got over that, and we all started talking to you as if you understood everything. And when we told you about the surgery, I know you heard us. I know because after we opened all of our Christmas presents, you surprised us with three words, clear and perfect: “Go to Portland?” It was a week before the surgery date, but there you were, ready to charge in.

Son, you know in The Good Dinosaur, how Arlo is anxious about everything, and his dad has to tell him, “You’ve got to face your fears”? I think when you watch that part, you think the dad is talking to you. But that’s backwards. You always face your fears, son. If anything, it’s your father who still needs help facing his own.

The fact is, you are one of the bravest people I’ve ever met.

When I was twelve (or was it thirteen?), I visited a foreign country called Romania, where the culture was different, and the language was different, and nobody understood anything I was saying. It was fun, but it was also hard and sometimes confusing.

Is this what it feels like for you all the time? The world around you must seem so strange. You live in a culture that is hard to understand. We laugh so loudly, and we talk so quickly, but we aren’t very good at waiting to listen. You must live your whole life feeling like a foreigner. An outsider.

And yet, you walk toward it. You get through it. You march in like you did at the hospital, and you face your fears like a dinosaur on his way home to Clawtooth Mountain.

Maybe you don’t think you are brave because you feel afraid. But courage isn’t about what you feel son; it’s about doing the hard thing despite what you feel. It’s about coming to Wednesday Night even though there are lots of kids making lots of noise. It’s about getting in the car and going to school even though everything inside you craves the safety and peace of your living room. It’s about walking into a hospital waiting room even though you know the pokes are coming.

This is what you showed us so clearly last month, son. It’s what you show us every day.

Next year, you’ll be a teenager. We’re about to walk into a brand new wilderness. Both of us. But if you can face your fears, then I think I can face my own. We can face them together.

Happy birthday, little Arlo. And I’m proud of you.

Dad

Here he is in the waiting room, smiling and ready.

And here he is afterward in his happy place. Arlo in the book, and Arlo on the iPad.

Click here to read the next birthday letter.

And if you liked this post, check out my book, Aching Joy!

When we Can’t Carry them In Anymore

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Our church’s special needs classroom used to be a safe haven for my autistic son, Jack. It was a respite for him; a twenty-third Psalm reprieve from the throng of kind, caffeinated congregants hoping to win a “good morning” from him, or at least a hi-five. Not anymore. Six months ago, we moved his beloved “Open Heavens Room” to a larger classroom across the hall. Our boy doesn’t like change, and this change pushed all of his OCD panic buttons. It spooked him.

He refuses to step foot in there now, so he sits with the adults through both the singing and the sermon, eyes glued to a visual timer on his mother’s iPhone.

It’s not a bad trade, in one way. Sara and I would prefer our son to join the congregation and be with his peers, but the arrangement has complicated all of our lives. We work at church, but the whole place makes him antsy now. Someone always has to sit with him through the service in case he tries to bolt without warning, or randomly yells “Syndrome’s remote!” from the Incredibles. Both have happened.

When Jack was little, this kind of thing wasn’t a big deal. We would take the same approach as we would with any of our other kids: we would simply pick him up and carry him into the room against his will. Because he would be fine. Kids get over things quickly, right?

Well, maybe, but he is eleven now, and he’s getting stronger from all that sock flapping. He’s almost as tall as his sisters, and his will has only hardened in his growth spurt. It’s no use trying to force him to do anything he doesn’t want to do. More to the point: it is counter-productive.

The “pick him up and make him go in” phase of parenting is supposed to be short.

Small children are too young to understand why they must brush their teeth every night, or why they have to fasten their seat belts, or why they have to go to class. As parents who do understand, we sometimes have to make those decisions for them. They are growing, however, and soon, they will have to choose on their own. We won’t be able to carry them in anymore.

How do we prepare for that eventuality? By ceding control in small increments. We phase out coercive parenting little by little, and begin to lead instead through influence. We begin to regularly offer them choices, and we explain why some choices are inherently better than others. And while we do all of this, we hope and pray that our children’s comprehension will grow apace with their stature.

But there’s the rub. This hasn’t happened with Jack. In many cases, his understanding (as far as we can tell) hasn’t kept up with his limbs. Sometimes he is just being stubborn like any other eleven year old, sometimes he is overstimulated and overwhelmed, but many times, it seems like he truly doesn’t get it.

My boy is growing, and it’s exciting and wonderful and scary and endlessly complicated.

So how do we lead him? Certainly not by authoritarian measures. Coercion is a last resort now. Jack’s will has begun to blossom, and our tactics have necessarily changed. We have had to stop pushing and start leading.

I suppose in this way, my son is not any different than the rest of us. In order to lead him, you have to invest in him. You have to walk beside him. You have to show him you care about him. You have to build trust, and trust-building takes time.

In our current struggle, I am grateful to have friends who live this principle. Isaac and Lori, who often work with Jack on Sunday mornings and Wednesday nights, are playing the long game, opting to guide him gently. They’ve sat with him. They’ve talked with him. They’ve taken walks past the big, scary door to the Open Heavens Room, and have assured him that everything is going to be okay.

This is what real leadership looks like, and it’s beginning to pay off.

Jack is starting to come around now. He even took a couple steps through the door last week. He kept his eyes shut, but he did it. You can see it in Isaac’s video below.

It will take more time, though, and that’s okay. This is our life now. We don’t rush things anymore. The days of causation and coercion are coming to a close. This is the age of coaxing and calling; of hand-holding and shoulder squeezing; of “take a deep breath, son” and, “you can do this, buddy. I know you can.”

And he will. Just wait and see.

(Many thanks to Isaac for the video and for the patience. We are fortunate to have you in our lives.)
Feature photo by Anne Nunn Photographers

Autism, Anxiety, and Stillness (A Letter to Jack)

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Dear Jack,

I heard your footsteps at midnight last night, fast and frantic. They took you to the sofa in the dark. I found you there and asked if you were okay.

“Did you have a bad dream?”

You didn’t answer.

“It’s okay. It wasn’t real, buddy. “

I tried to lead you back to your room with your bedding and favorite pictures—items that whisper of safety and home. Your yanked your hand back in protest and yelled,

“No fank you! No fank you!”

So I brought your pillow to the living room and wrapped your stiff frame in your blanket. You had to turn it the other way round so the soft side was up. I muttered my apologies. I know that’s how you like it. It was just dark, and I was half-awake.

Then, you just sat there, still and stoic, leaning into the arm of the sofa. I couldn’t see your eyes, but you did not object when I went back to bed.

Your mother was breathing softly next to me. I lay there wondering about your anxiety, and why you feel the world has turned against you this year. It’s not just bad dreams. It’s everything. The Oregon countryside used to give you delight. The lakes and riverside trails would brighten your eyes. Swimming and exploring brought your laughter and joy. You were an outside boy.

This year, though, the open air has morphed into your enemy. We can’t figure out why. You have become the keeper of the sliding glass door; it must stay shut. Always. You never spin in your outdoor swing anymore, and you don’t want to join us in the back yard even for evening campfires. The only way we can bring you to the lake or to the park is if we bring your traveling tabernacle: a little blue tent and a timer. You will sit in there and stare at the countdown clock as it ticks back down to home.

Then there’s your OT appointments. Miss Molly was one of your very favorite people in the world. But now you don’t even want to go. You love these people, son. You love these places. I promise, you do.

In the darkness, you interrupted my thoughts with a frantic cry, “Daddy! Daddy! Daddy!”

I rushed back out to the living room. Then, you gave one of those perfectly-timed, fully-formed movie quotes that continue to astonish us:

“I am completely terrified.”

It’s a line from Happy Feet, apparently, where a penguin is alone on a floating chunk of ice in the ocean. Your voice was flat with those borrowed words, but I could feel the emotion in the tight grip of your fingers. You wouldn’t let me leave.

And then I remember that other line you’ve been quoting so often from The Good Dinosaur: “I ain’t a coward!”

No. You’re not a coward. What causes your nerves to awaken like this, son? What is it that stiffens your limbs and sends your heart pounding?

Maybe that’s a silly question, though. The fact is, for the past two months, I’ve been stiff and skittish, just like you. It’s this book I’m writing, I think. It’s hard for me to dig up our story—yours and mine—without also digging up the bitter water I drank for so long. That water made me unsure of myself. Of everything, really. It made me run away from things that did me good.

We all do that sometimes when we are scared and hurting. We lose track of the things that refresh us and bring us joy. We think, “I’ve changed. I don’t like these things anymore.” but we haven’t really changed. Our hearts have just forgotten, that’s all, and they need to be reminded.

You and I have both come so far the last few years, and this is what troubles me. It feels like we’ve regressed again. It feels like the anxiety is pulling us both backward, and it’s hard to find our deep gladness. I can see what is troubling me, but what about you? What makes you afraid? What makes you forget?

Sometimes, when you panic at bedtime, you scream for the “Jesus Storybook Bible.” Your favorite is the “Captain of the Storm” story, where people in the boat are so scared until Jesus speaks to the wind and the waves. Then, the peace returns.

You love that story, I think, because it is your heart’s prayer: you want our impossibly loud and blinking world to calm down. You want to breath easy again and rediscover stillness. Know this, my son: it is my prayer, too. I’m in that boat with you. So let’s hold to one another tightly. Let’s look up together and listen again for the whispers of Home.

This is a profound and beautiful book. You should totally get it. The audiobook is excellent, too.

Image credit: my daughter, Jenna

Autism and the Gift of a Metaphor

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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.

“When I was Young I Knew Everything”

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It was twenty years ago. A lifetime. We were walking the streets of Manhattan late in the evening after a Broadway Show. There were ten of us — seven graduating seniors from a tiny Christian school in east Texas, and three adults. The big city awed us southern kids in all the ways you’d expect: the bright lights, the endless mass of humanity, and the breakneck pace at which they all went about their lives. It’s true they looked like ants from the top of the Empire State Building, and that was only appropriate. They never, ever stopped moving.

But even the spell of the New York couldn’t shake me from the fact that I was right and my friend was wrong, and I had to keep telling her. We had just seen Miss Saigon on stage, the famous story of a Vietnamese orphan girl and her American G.I. lover. Their romance produced a child, but the soldier had already gone home, leaving her to provide for her son as a dancer and prostitute (I might have some of the details wrong here. It’s been twenty years…).

“She was desperate,” my friend said. “What do you expect a mother to do?”

“It doesn’t matter. That lifestyle is wrong,” I told her.

She was done discussing it, but I wasn’t, so I kept pushing. Kept hounding her.

I don’t remember what I said, but I remember it was too much. My friend knew this side of me well. I was a brash eighteen year old who had to have the last word. She usually rolled her eyes and let me have it. That night, though, I’m pretty sure I made her cry.

When I think of that year, I think of the hit song that dominated our mix tapes: “The Freshman” by The Verve Pipe. The sad, grungy ballad opened with the words, “When I was young, I knew everything.” How fitting that I never understood the line back then.

I wince when I think of those days. I wince because of the essay I wrote and read aloud in English class: how to always be right about everything. I wince because of the stupid thing I said in my speech on graduation night: “I can’t wait to throw my two cents into the arena of ideas.” I didn’t have two cents of my own to throw. I had pennies borrowed from other sources–some of them wise, but most just loud.  I wince because even though I had never experienced a lick of genuine hardship, I walked with an arrogant strut, blasting my beliefs without a shred of gentleness or humility.

And of course, nothing has gone according to plan since then. It never does. Rather than changing the world with my big ideas, the world broke me.

***

“For the life of me, I cannot remember what made us think that we were wise…”

It is a cliche to say that men are fixers, and that cliche doesn’t fit me anyway. I don’t fix things; I have friends who fix things I break. But even for the inept guys like me, the stereotype usually fits. We crave resolution. We lean into it. When we don’t get it, we fall off our axis. Our worlds start to tilt.

My world tilted eleven years after I graduated from high school. Within fifteen months, I lost a dear friend to cancer, my infant son underwent open-heart surgery, and my three year old drifted into the fog of severe autism. For me, this triple-blow was especially debilitating, because up until then, I had never experienced one real crisis let alone three.

Answers had always come easily before that storm. Theology and logic had been obvious things. Truth glimmered so brightly, I wondered why everyone couldn’t just see it. Not after that.

Jack’s autism was the hardest because it lingered. It still lingers. And even though I’m not walking in perpetual numbness and sorrow anymore, his wordlessness, his seizing, his panic attacks and overwhelming shrieking… those things still throb beneath my surface. I can’t bring resolution to those pains in him or in me.

And yet those same pains do some good. They make me more aware of my need for God and for renewed redemption. They remind me daily that I am inept at life, and that I don’t have all the answers. Not anymore.

***

“And now I’m guilt stricken…”

It’s been twenty years since I hounded my friend about the themes of goodness and morality; twenty years since I donned the cap and gown and charged into a world I couldn’t possibly understand.  I don’t know half as much as I did then, and yet here I am, dealing out words and assertions for a living. It’s a little terrifying. I’m a teacher and preacher, and my writing is starting to reach larger audiences. I’m thirty-eight years old, which is safer than eighteen, I suppose, but I still look back at pieces I wrote just a few years ago and I wince again. Was I too flippant?  Were my words haughty? Or maybe I went too far the other way, pulling punches beneath the ghost of an eighteen year old ignoramus. Will I ever be wise and gentle enough to say anything without regret?

It’s been twenty years since I knew everything, and I want to take it all back. I want to tell my old schoolmates I’m sorry for my arrogance; for my snotty, brutish arguments that carried neither substance nor kindness; for my hasty opinions and unfeeling judgments, and for the way I looked down on those who were limping. Forgive me. I hadn’t been broken yet. I wish I had been broken earlier. I can only pray I am broken enough now.

 

Let This Carry You

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Sunday afternoon, our whole community showed up to support him. Monday evening, he melted down again.

Anxiety attacks have haunted Jack nearly every day this month. They’re not temper tantrums. Rather, they’re like onslaughts of sheer, icy panic; floods of emotion he can’t hold back. He runs toward the nearest glowing screen and starts pushing buttons—a digital itch he must scratch. We tell him, “no movies, son,” and he begins punching his forehead. We raise our voices, but before we even get the words out, he screams, “No helmet!”

“Stop hitting yourself, then,” we say.

Then, the tears spill out in shrieks. All we can do is pull him close and whisper his requested reassurance: “first sleep, then morning, then Cars 2.”

It happened Monday night when I was alone with the boys. His 5 year old brother set him off with an actual temper tantrum. Jack couldn’t recover, and he ended up huddled close to me on the couch.  “I love you, son,” I told him. Our heads were touching. “First sleep, then morning, then Cars 2.”

On evenings like that, I often feel the old tug of despair on my sleeve, and the temptation to let it wash over me like it used to: Jack’s anguish; his future; our lack of connection. It still gets the best of me from time to time. But on this occasion, the sadness didn’t win. It couldn’t win. Not after what happened the day before.

***

It rained during the 5K Race for Autism, but nobody cared. They are Oregonians, after all. Some didn’t even bother with sweaters or raincoats, letting Team FlapJack shirts shine with pride. The blue was more prominent than any other color or costume theme. A team of over sixty. You couldn’t miss us.

I stood next to the boy himself, who was wearing a brown coat over his own blue. We had talked about the race all week long.

“Look at all these blue shirts, buddy. They’re here for you!”

Half my church showed up, and others too. Old friends. Former teacher. Staff from his early intervention years. Even his beloved Mrs. E. When he saw her, he leaned in with an expression of dazed wonderment that spoke more clearly than words ever could: “I can’t believe she’s here.”

Indeed, I couldn’t believe they were there, either. All of them showing their support for my family. All of them cheering on my boy. So many of them. And the other teams, too, all celebrating beloved children who are so often forgotten. So much joy.

The race was cold and beautiful. We wound through a riverside park, past Autzen stadium over a long footbridge, and back along the edge of the University of Oregon campus. A caravan of friends ran with me to keep me honest. I didn’t want to walk this thing. I wanted to run it through to the end. They didn’t have to prod me much, though. With a pack of friends running the same race, who needs policing?

***

I sat in Doug’s office the next morning and reflected on it all. Doug is a mentor and a friend who has walked with me through the thick depressing years, and prayed me through my innumerable ups and downs.

“Let yesterday carry you,” he told me.

I knew at once what he meant. All those beaming faces, the sea of royal blue runners, the overwhelming show of support. Not every day is like that, but Sunday was. Sunday was solid and real. Sunday could never be taken away from me. It ought to be a stake in the ground; my stone of remembrance.

And this advice was coming from a man who’s just been walking through the greatest, most painful trial of his own life. His wife of over forty years is battling severe Alzheimers. His best friend is slipping away by inches. He knows all about ups and downs, bright days and dark ones. Memories are more than gold-laden treasures; they are his swords.

In a culture so enamored with romantic tragedy, it sounds almost naive to think that memories can be used to fight despair rather than lead to it.

Here in the west though, despair is as decorative as a henna tattoo. In our worst moments, we are the goths, dressed in midnight and hellbent on mourning. Our laughter is bitter and hoarse, our diversions dark with apocalyptic foretelling, and even the pineapple rays of sunshine just serve to make the shadows more stark. Joy becomes a scarlet letter worn by the privileged few who are not outraged, and therefore not paying attention.

“How can we celebrate while the innocents suffer?” they demand. We stutter, so they press on, insisting the party-goers silence the whooping and whistling, and all the waving of palm-branches; that deliverance is a myth as long as some innocent still sits in a cell, and we all know injustice abounds.

So round and round we go on a carousel of hand-wringing and hashtags. Happy faces are all ablur and out of touch. We have no time for them. Days gone by are faded cold. We have no time for them. And hope for tomorrow hides beneath our beds like a monster waiting to see the skin of our ankles.

In such a culture, it feels natural to surrender to it all, because despair is easier than joy. Despair is memory foam, yielding to the weight of the worlds we carry on our shoulders. 

Joy, though… Joy makes demands on us. Joy insists I remember that I am small, and my drama is limited. Joy asks me to offer thanks to God for his gifts even while they elude me. I might be barren, but a couple down the hall just delivered. I might be living in a drought, but somewhere, some thankful farmer is dancing in the rain. My current experience is simply not wide enough to define eternal truths. Creation cannot be wholly bitter at least, in a world of newborn children. As long as there is laughter, reality can’t be wholly cruel, and God can’t be wholly unseeing.

Even on days when the wine dries up, the dancing music goes silent, and there is no merriment to be found, we can, at least, hold in our minds the paintings of better hours. Those pictures are whispered reassurances from a calming Father, “there is still beauty. It’s not all used up.” And on the blue-shirted backs of these memories we climb, and ride them through till morning.

Here’s the news report:

Images provided by my friends Jaymie Starr Photography, Ariah Richardson, and Chris Pietsch of the Bridgeway House. Thank you all!

Autism, Fatherhood, and the Lure of Isolation

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There was an article in the Boston Globe last week about how men tend to let friendships slip away over time. The resulting loneliness has dramatic implications on our physical health, to say nothing of mental health. Why? Because we are hard-wired for “phileo”.

We talk a lot about the need to be loved, but by that, we usually mean the big, obvious kinds. We need agape love, unconditional affection from our parents, our families, and from God. We feel the need for eros, romantic love with sexual expression. But we talk less of our need phileo, the deep, friendship variety. Brotherly love, as it’s called.

As D.C. McAllister wrote, phileo is “a kind of love we desperately need in our lives—passionate, nonsexual love. But we’re so uncomfortable with the expression of intimate, familiar feelings among men that we’ve given it its own name—bromance.” She’s right. Phileo has become a pop-culture punchline. I have to think that is part of what’s driving the trend toward isolation. We don’t take friendship seriously.

Phileo is a need. So why do I run away from it?

When describing my autistic son’s initial regression, I often say he went into a fog. He became distant, he lost his vocabulary, and he refused to look us in the eye. What I don’t say often is that I followed him. I went into my own fog. I became sluggish, troubled, and increasingly introverted. While Jack drifted into autism, I drifted into depression. And I fed that depression with a self-imposed isolation.

Sorrow hung over me for years. I had friends, but I didn’t call them. Instead, I would fold myself into my laptop, plug in some earbuds, and tune out the helplessness, even while my kids tried everything short of setting my socks on fire to get my attention. I would offer a wry nod, then go back to whatever on-screen emergency I had just invented.

Studies show that parents of special needs kids have significantly elevated risks of anxiety and depression.

That makes sense. The physical strain of sleepless nights, the psychological fears of wandering, bullying, and the future all contribute to that risk. But for fathers at least, there’s another factor. Men are fixers. I know, that’s a cliché, but there’s a reason for the stereotype. Men crave resolution. We lean into it. And when we encounter something we can’t resolve — especially something as confounding as autism — we lose our sense of equilibrium. Our confidence comes crashing down.

I wasn’t seeing a counselor during my dark season, but I was fortunate enough to have my boss and senior pastor, Joshua, down the hall. For months on end (or was it years?), I would sit in his office and fall apart on a weekly basis. In retrospect, it wouldn’t have hurt to double down with a therapist.

But then, what are counselors if not friends we pay for out of desperation?

Don’t get me wrong, it’s a wonderful and immensely helpful profession, but if people talked to their friends more often—-I mean real conversations in the bond of phileo-—don’t you think many of us would find healing organically?

I had organic friends. I just didn’t hang out with them. And for that reason, it took me far too long to mend.

Then one Sunday, I was onstage preaching about going through pain, and it all came out in a rush. Jack was going through a frightful season, and we were all hurting with him. I ended up awash in tears. Big, ugly tears.

When it was all over, two men stood at the foot of the stage, looking up at me with red eyes of solidarity. Two good men. Friends. I stepped toward them, and they embraced me together without shame. I wept some more, right out in the open. I think they did, too.

And at that moment, I swear I heard a whisper deep inside me: “I have given you brothers.”

Indeed, I have brothers, but even years later, I still have to fight the urge to live as if I don’t. Because I’m a man, see, and “I got this! What? You don’t think I got this?”

Yeah… I don’t got this. “It is not good for man to live alone.” We quote those words at weddings, but it’s as true for phileo as it is for eros. It is not good for man (or woman) to live without friends. We are relational beings, like it or not. When we pull away from relationships, we suffer. That is part of our design. Life is built to be shared, not hidden.

I recently joined some guys for a weekend at the coast. I was too busy to go, but I went anyway. We had no agenda, and ended up wasting time together over beach bocci ball, grilled meats, and an assortment of grizzly banter. But of course it was more than that. We were sharing troubles. We were trading life. We were lending strength.

One of those mornings, I walked to an overlook at Seal Rock beach, the same hidden paradise where we shot our viral video last summer. For an instant, it was as if I stood above my entire journey with Jack. All the heartache of his diagnosis, the depression, the growth and the setbacks, the hiddenness turned shockingly public with a single upload—-all of it hit me afresh. And again, I heard the words, “I have given you brothers.”

I am glad to be out of the fog, and to see the path again. But most of all, I am grateful I do not journey alone.

***

Feature image provided by Daniel Horacio Agostini at Flickr.com under Creative Commons License.

On Learning to Love a Tow Truck

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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.

Autism, OCD, and the Longing for Home

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We all heard him screaming; not everyone knew who it was. But I’m Jack’s dad, and I know his voice. I was in the auditorium, teaching a Wednesday night class on the book of Acts. He was in a different classroom across the hall. It’s our church’s special room for kids with developmental delays. We call it the “Open Heavens Room.”

I knew from his scream that he was frantic but not in pain. His mom would be two rooms away, teaching a gaggle of children. I swallowed.

“I’m sorry, guys, that’s Jack. Mind if I… I’ll be right back.” My class was gracious. They know the drill by now. I love our people…

I ran out of the sanctuary and Jack saw me at once over the split door that keeps him safe. His eyes were red and he was screeching the words, “Smart Writer One.”

I knew at once what he needed.

“Smart Writer One” is the name of Jack’s favored electronic toy. Why the “One” in his name? He has a twin, you see: “Smart Writer Two.” We found the twin on eBay. It was all Jack wanted for Christmas. He inspected every Amazon package that came to the door over the entire holiday season, begging us to open it. You’d never have guessed he was waiting for something he already had. What’s better than a Smart Writer? Two identical Smart Writers, that’s what!

So now, the boy plays with his two favorite toys for hours every day, and they alone share his pillow. His sister, on a whim, suggested that he change Smart Writer One’s name to “Gary One.” It made no sense, of course, because her mind operates on random thirteen year old frequencies, but for some reason Jack capitulated. He liked the nickname.

“Gary One,” he said in approval. And of course, the new guy is “Gary Two.”

The Garys never leave the house. They are much too precious. Oh, believe me, we’ve tried to bring them along. We’ve told Jack how much more fun his drives to Portland would be with his two favorite toys, but every time we’ve tried, he’s pushed them toward their hiding spot in the cupboard.

“No fank you! No fank you!”

Well okay then.

Obsessive Compulsive Disorder is not uncommon for kids on the autism spectrum.

In fact, OCD is one of the primary markers that experts look for. In our experience, these obsessions can change over time. Jack had a tower of bean cans that he kept in our living room for months. He also had a shirt he refused to take off. And then there are the movie phases. We’ve had “My name is John” videos, and seasons of Pooh Bear, Dragons, and uncountable viewings of Cars 2.

Food, too, reflects those OCD tendencies. Jack eats, like, three different foods. That’s it. He does chips, waffles, and these slimy cookie ball things that help him to decorate our sliding glass door with handprints. Sara hides all manner of nutrition in everything he eats because that’s the only way he will get what he needs. His diet is just too limited.

Whenever he makes a shift to allow something new into his life, we all breath a sigh of relief. It’s good for him to stretch. It’s good for all of us to stretch.

Right now, his Smart Writers are his best friends on the planet, and whenever he’s out and about, their existence is always on the edge of his consciousness. They anchor him to where he comes from. When he cries out the name “Smart Writer One,” then, we know what it means. It means he wishes he was home.

That night in the hallway, I pulled my microphone off my ear and hugged him over the split door. His eyes were red and he told me one more time, “Smart Writer One?” It had become a question, and he turned his ear to my lips to receive my expected answer.

“First Open Heavens Room,” I whispered, “Then Smart Writer One.”

That is our script. Yes, son, we know you don’t want to be here. Yes, you will see your toys soon. We have some things to do before then, but it won’t be long. First this, then home.

Jack wiped his eyes and turned back toward the couch where his laminated pictures sat. That was all he needed the rest of the night. All the kids in that room have their coping mechanisms. Jack’s are actually quite simple. He just needs a reassurance that we haven’t forgotten about him, and that things won’t be that way forever.

Indeed, that is a truth we can all settle into. Life can make us anxious and angsty. Irritants can masquerade as emergencies. And soon, everything turns frantic.

At such times, we need to a good reminder of the temporariness of things. Life might seem acutely exhausting right now, but it won’t be like that forever. There will be better days when peace returns, joy comes roaring back, and the air around us smells like home again. First, the hard stuff, then the break. First pain, then home.

All it takes is a whisper from our Father.

A Clash of Gray and Gold: A Reflection on Self-Pity

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“What do you want to talk about today, Jack?” my wife asked our autistic eleven year old.

“Cars 2.”

Sara is good at this “work time” thing. She takes him into his room, pulls out a big alphabet stencil, and asks him questions. Sometimes he waits for options before he answers. He likes picking options. But other times, he starts pointing to the letters to spell out his answers. And on the best days—-golden days-—he just says the words. Today was a combination.

“Cars 2 is…my favorite,” he chose. Of course, it was because of Mater, the Tow Truck. We know this.

She asked him why he liked Mater so much. Was it because he was happy? Or helpful? Or a hero? Or because he was a friend?

“Hero,” he said aloud. And then came the words: “I want to be.”

“Want to be what? Like Mater?”

“I want to be… hero.”

***

A month earlier, that same boy was sitting under his blanket for the tenth straight day, still as a scarecrow. There was no expression in his eyes. His face was pale and his lips were open just enough for a current of air to fill his lungs, then depart. But the thing that haunted me the most was his frailty. He looked like one of those boys in National Geographic. How much weight had he lost since he got sick? Was it the meds? The ones that are supposed to hold back the seizures? They’re only holding back his appetite and he’s having seizures anyway.

I looked into his blank eyes and wondered whether I ought to stay home from the conference. Sara was canceling because of this, and I was disappointed, even though I knew it was the right thing. A boy needs his mother. But no, he didn’t need me right then. Clearly. And that fact stung.

So I loaded up and said goodbye to him. He parroted the words back to me in breaths.

“Bye buddy.”

“Bye buddy.”

“I love you.”

“I wuv you.”

It was only two nights and Sara had plenty of help, so I sighed and got into the car. For the first half hour, I couldn’t shake it. The self-pity, I mean.

I kept thinking, my son doesn’t need me. It’s true, isn’t it?

I settled into my empty room at the conference which was not really a conference at all. It was a retreat for pastors and ministry leaders who need to remember Why they do what they do. At least I had a great view from my window. The mighty Pacific waves were pounding the mouth of a small river, pumping white foam back through the bends to where the seagulls play. And out in the ocean itself was a jagged rock with an impossible lighthouse standing guard over the coast. I wondered how the light keeper would get out there, and how lonely he must feel.

***

Special needs parents know about a lot of things. We know about hustle and perseverance and elbow grease. We know how to diffuse a meltdown and how to survive an IEP meeting on two hours of sleep. We know how to celebrate small victories, how to find the most obscure action figures on eBay, and how to never stop believing.

Some of us—many of us-—also know about self-pity.

We might feel it most acutely on social media. Anything can trigger the involuntary comparison machine: a typical picture of a neuro-typical kid doing neuro-typical things. Moments our child might never have.

Other times, simple isolation might bring it on. That comes on helpless afternoons when our kid won’t snap out of it. Won’t respond. We start muttering, “there’s nothing I can do, then what am I even good for, right?”

Seasons of sadness are inevitable. But sometimes that sadness snowballs, all the beautiful reds and blues and yellows desaturate. All the smiles we relish, the progress we are making, the joy our children deliver in the midst of the mess—we forget it all. We feel alone on a rock, surrounded by threatening waves, wondering how in the world we got there. It is a scary place to visit, and an altogether unhealthy one to stay.

The preachers tell us, “you can’t stop a bird from flying over your head, but you can keep it from building a nest in your hair.” This is as true of self-pity as it is of lust or anger. Sadness will fly overhead. Trouble will come. And while it is pure folly to pretend everything is fine, it is equal folly to live inside the shadows it casts. When we do, we rob our families of the joy they need from us, and we rob ourselves of the joy we need from them. Those joys can’t dissolve the sadness, no, but they have a way of pulling us back into the vibrance of a healthy life. We must not flee them.

I know there are deep grays. But there are also sunsets made of gold.

***

When I returned two days later to my family room, refreshed from rest, prayer, and ocean air, Jack wasn’t wrapped up in his sick blanket anymore. He was sitting shirtless and cross-legged in front of his favorite heater in the corner of the room. When he saw me, a smile crept up one side of his face, then the other. He held my gaze and I held his, and just like that all the colors came back.

“I want to be hero,” he said to his mother.

He already is.

(Feature photo provided under Creative Commons license by Judd Hall

When Life Loops

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We were standing on a narrow beach in Northern California, my family and I, when came my favorite moment of the year. The girls were exploring the fresh water stream with their mother and the little boys behind me, and I was staring over Jack’s head at the swells of water elbowing their way between the two massive jutting rocks that frame the landscape. Those waves always looked too big to fit, but without fail, they would tumble through toward the sand like a throng of angry peasants storming the castle gates. It was mesmerizing.

Soon, I realized Jack wasn’t watching the water, though. He was watching me over his shoulder, and he wore his sneaky grin. What are you getting at, I thought, as he tiptoed toward the waves, eyes still fixed back on me. And then it hit me: He wants me to chase him. He’s reliving our video. The “Jack and Daddy” video, as he calls it. The one that went bananas on the internet this year.

I took off running toward him, and he braced himself, laughter spilling out of him. I picked him up and ran into the surf and started spinning round and round the way we did in the film, and when I set him down, he squeezed my hand and started running down the beach like we did when the drone flew overhead. We were both laughing now. It was pure, unfiltered Jack-style affection.

It was a feedback loop of reality and play: Life imitates art imitates life.

Loops are familiar to autism families. We live with repetition, and I don’t just mean routines of screen time and trips to school. I mean loops of scripted movie dialogue and songs. I mean repeated phrases shouted out during storms of anxiety. I mean the dizzying patterns of progress and regress.

It’s been that kind of loopy year for us. Jack was doing well at the beginning of 2016, but then had his biggest regression since The One that started it all. He went silent on us for two months and when his voice returned, he had forgotten words and basic letter sounds, not to mention strength and motor skills. The change was so startling we found a neurologist and began a battery of tests. “Whatever it is,” the doctor said with a shrug, “we’re dealing with something beyond autism.”

The tests results strongly hinted at a form of epilepsy. Jack doesn’t have scary, obvious seizures, but he does stare off sometimes. Well, oftentimes. If those stares are absence seizures, they could be resetting his progress. one step forward, one step back. Sometimes more.

I confess I felt a little vindicated. I thought now, at long last, it might be acceptable for me to be upset about Jack’s condition. In my circles, you are supposed to celebrate all that autism brings, but it’s more or less okay to dislike things like epilepsy. And I’ve done my best. I strive for “autism acceptance” in that I want to see a world where everybody accepts our kids no matter what their neurological condition. But sometimes there comes a pressure to pretend to be happy about it all. Try as I might, I haven’t ever been able to cross that bridge. It’s not that I’m miserable; I’m not. We don’t hate the kind of life we received, but we’re not always thrilled about it, either. Is autism a blessing or a blight? As I said in my video, “I don’t know, and I’m weary of caring.” So I’ve tried to write from a neutral position.

Then, when that same video went viral, things shifted.

Suddenly, people were asking me to speak about this and contribute pieces to that, and they got all excited when I commented on their posts. I wrote a poem they liked, so they saw me as a spokesman. An autism advocate.

But the truth is, I’m not a very good advocate. A good advocate lets the truth be known, and lets it be known loudly when necessary. A good advocate raises hell and doesn’t take anyone’s crap. A good advocate knows what to think. I don’t. One day, I’m thankful for the enormous strides we’ve made in culural autism accommodation. The next day I bemoan the lack of remedial understanding. We have come so far. We have so far to go.

And that’s my problem. I haven’t arrived at enough conclusions yet. My story is, for now, a looping story. We step forward and we step back. We progress and we regress.

Times are good and times are terrible, and then they turn good again.

Jack regressed in 2016, yes, but I’m happy to report he’s come roaring back this fall. My boy is now spelling out his own thoughts on the letters of a laminated keyboard. He told us he likes to sing, that he wants a cat, and that he really likes family time, especially when we re-enact Winnie the Pooh scenes. We rejoice at breakthroughs, and when they go away, we ache to see them again. It can be a dizzying ride. One day, we will arrive at some form of certainty. We will understand what is really going on with my son and how to proceed into his adolescent years, and maybe then I will know what to think.

But for now, we loop forward. We spin round and round like a scratched CD, sputtering and reaching and praying for the next moment of unbroken melody. We spin like father and beloved son, ankle deep in cold oceans. And while we spin, we cannot help but laugh.

(For those who didn’t see it back in August…)

Story Advocacy: The Genius of “Life, Animated”

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I have this old pixelated video of twelve month old Jack learning to walk. He is  stumbling back and forth between me and his two sisters like a tipsy teddy bear, his mouth wide with triumph, and his eyes alive with laughter. They are so clear and cloudless. Sara is behind the camera offering whoops of victory, and we are all four cheering. It is the only real evidence I have that my memory didn’t play a trick on me. There really was a time before Jack went into the fog.

That clip represents the first bit of kinship I felt with Ron Suskind, autism father and author of the magnificent bestselling memoir “Life, Animated.” I fell in love with the book last summer, and was thrilled to learn about the film adaptation of the same name. Roger Ross Williams’ documentary is a masterwork of storytelling. It rocked me like few films have, and I think everyone should see it, especially those with loved ones on the autism spectrum.

“Life, Animated” is the story of Ron’s son Owen, who experienced his own regression into autism at the age of three. Like our story, this one really begins with a video: Owen is a tiny Peter Pan, and his dad is Captain Hook, and the two talk and whirl around in the autumn foliage, tumbling through leaves and laughter. It is a perfect picture with nothing missing.

And then… and then…

Regressive autism, Ron says, felt like a kidnapper.

The disappearance of Owen’s language and relational faculties felt like more a crime scene than a medical mystery. Ron’s recounting of those early days of wordlessness and distance would have cut my heart to ribbons even if his story hadn’t mirrored my own so well.

From there, the film shifts back and forth between Owen the child and Owen the young adult. We can see right away that he is no longer non-verbal. On the contrary, he is a grown man with grown language dealing with coming of age dilemmas that all grown-ups face. He has graduated. He is moving out on his own (sort of.) He has a girlfriend, and is looking for a job. He still has more than his share of challenges, of course, but he is facing his fears and beating them back. He even creates his own illustrated stories of Disney sidekicks. Owen is, in every way, growing up.

So how did he get there? That is what makes his story unique. Owen overcame his regression through the things he loved most: Disney movies. His affinity with the hand-drawn classics taught him not only how to speak English but how to interpret the language of human interaction. It didn’t happen overnight. In fact, it took years for his parents to get any language out of him, and much longer to get any actual conversation, but it happened. And even today as a young man, Owen relates everything to Disney. He quotes long strings of dialogue, sings the songs in convincing voices, and when he gets anxious, he paces in circles, mumbling his way through entire scenes. Early on, his family became students of all things Disney until they too could speak the language fluently. They entered into their son’s animated world, took him by the hand, and led him back into theirs.

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Even before the book came out, Ron began preaching the gospel of “affinity therapy” for autistic children, and more and more kids are finding significant breakthroughs by way of their own passions. Our boy is finding success here, too. I wrote about it earlier this year. Jack’s internal index of Disney and Pixar movie quotes has given him verbal options to communicate with since he can’t come up with the words on his own. He pulled out a good one recently when was bundled up in his hospital bed for his sleep study. When the nurse raised the guard to keep him from falling out, he mimicked Winnie the Pooh trying to get out of Rabbit’s hole: “Oh help and bother. I’m stuck.” We shouldn’t have laughed, maybe, but we did.

The Disney connection isn’t what made me love the movie, however. It was the positioning. At age ten, my Jack stands between young, nonverbal Owen and Owen the young, emerging man. The gut wrenching days of no eye contact and no connection–those are over, thanks be to God. The heaviest fog has lifted.

But then there’s the future. This world is not built for boys like Owen and Jack–mysterious innocents as they are-—and that brings a fog of its own. I don’t like it. I want to fan it all away for him. I want to prepare the schools, the jobs, the friends for him ahead of time. I want the culture to make room for him, but I can’t do it fast enough. Time is working against us. The boy is growing too quickly, and we won’t always be here for him.

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So what is a father to do? What is a writer to do?

Should he sound the autism awareness misery alarm? Should he sing a dirge across cyberspace about the rise in numbers and lack of funding? Or should he go the other way, carefully editing happy songs about spectrum living in order to promote autism acceptance? Ron Suskind answers the question by simply telling us Owen’s story.

Indeed, this is why I loved the film so much, and it’s why I want everyone to see it. We need more of this kind of advocacy. I want to respond to the endless tug-o-wars with a sound mind and a full heart. I want to meet them all in the middle and say, “Here is my son. He has immense challenges behind him and before him, but he is as kind as a Pooh Bear and as happy as a Tigger. His name is Jack. I hope you’ll make room for him.”

Life Animated is available online through iTunes, Amazon, and everywhere else.

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

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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

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To Give Him a Super Power

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Our family is a story family. When my daughters were two and three years old, we began creating our own family mythology. We invented Teddy and Marianne, the child jockeys; Ricky the Ostrich and his magnificent submarine; Cowboy Pete and his fearless deputy, Rocky Raccoon (my apologies, Mr. McCartney, sir). Those characters became woven into our family lore. There have been theme songs, illustrations, and even clay figurines. Cowboy Pete is like an uncle!

As the girls grew into teenagers, their little brothers began requesting stories of their own. At their age, they don’t just want to hear a story, they want to star in one. So naturally, I gave them the Super Brothers. Super Sam (age seven) leads his team of crime fighting siblings with his super strength and indestructibility, and Tackle Boy Nate (age four) provides comic relief and epic, climactic thumpings of the bad guys and their vehicles.

I was sitting next to their bed on the night of that first story when Sam asked the inevitable question:

“Dad, what’s Jack’s super power?”

I swallowed. The first two Super Brothers practically wrote themselves. They were caricatures. Sam wants nothing more in life than to be the mighty, noble protector. Nathan just wants to crack jokes and knock things over. But Jack… what does he want? I mean, besides a viewing of Monsters University at three in the morning. What does he really want?

I’ve gotten lost in that mystery too many times to number: when a burst of laughter escapes him with no apparent cause; when he flaps his lanyards in front of a glowing blue screen; when he stands in front of me trying to make his mouth work in his favor—trying to tell me…something. And again, my mind calls back to Bono’s haunting lyric, “I want to trip inside your head, spend the day there… I want to see your thoughts take shape and walk right out.”

As the author of the Super Brothers story, I knew I had the power to give Jack a voice. But would that be right? Would that be (dare I ask of a children’s bedtime story) ethical?

It sounds like a petty consideration, I know, but believe me, in the world of autism, all roads lead to identity. Implications lay like land mines, even in the story world. My thinking went something like this: Autism is not a disease. It is, for better or for worse, a part of who Jack is. But is it all of who he is? Would the removal of symptoms constitute a fundamental change in personhood? And if so, doesn’t that get us right back where we started before the awareness campaigns began? Wouldn’t it mean we are once again defining our beloved children by the things they cannot do?

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My other children are constantly changing, and yet they remain, wholly and beautifully, themselves.

Jenna, my thirteen year old, used to have the cutest lisp. She couldn’t say her “R”s, and we all loved it. You might even say it was part of who she was. But then one day, she started speaking with perfect precision, and she hasn’t stopped talking since. To date, Jenna is still Jenna.

This has happened with all our kids, hundreds of times, and we never bat an eye, because we see the world with storytellers eyes: characters grow, learn, change, advance, relapse, and overcome. Characters are fluid. They encounter conflict and failure; they rise to the occasion and they fall flat; they despair and they save the day. Sometimes they even use their super powers.

So I made a decision. I gave “story Jack” the ability to speak. All it would do, I decided, was give him an avenue to express what was already inside him, autism and all, and believe me, he has lots inside him.

But I didn’t leave it there. I gave him something he already has, and exaggerated it.

“Jack has golden socks, and when he flaps them, a strong wind comes that blows away the bad guys.”

The little brothers gaped. “Whoa! Flapping power? Awesome!”

I continued, my mind racing. “And when he flaps them at the ground, it pushes him high into the air, and he can go wherever he wants to.”

“Jack can fly?”

Yes. Jack can fly. And when it’s time to rain justice down on the great ice cream capers of Junction City, Super Sam and Tackle Boy Nate will latch onto the shoulders of their big brother Flap Jack, and together, they will fly high over the trees until they see that particular black pickup truck hightailing it out of town. Because if he could, I believe Jack would do that for his brothers. He would take them anywhere, and he would use his powerful stims to bail them out of their boyish recklessness.

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On warm afternoons, we can hear crashing and squealing sounds seeping in from the back yard as Sam and Nathan reenact their adventures from the night before. I open the door a crack, and see them running up to their big brother who is flapping at the sky, lost in his own thoughts as always.

“Hey Jack, you just saved us! Good job, Flap Jack!”

He eyes them, then turns his back to resume his business, just as they return to theirs. They remain undaunted by his dismissals. Visions of hope will do that, I think. They will make allowances for temporal winces. Acts one and two are always filled with trouble, after all. Today, there may be rejections and silences, and even self injuries and wanderings. It’s hard. It might get a lot harder.

But tomorrow, who knows? Those villains might be vanquished with a single gust of wind. The Author of this story is far more creative than I, and He alone knows the storehouse of abilities locked inside our boy. We will see them. Some day, we will see them. But for now, we don’t just wait; we imagine.

Photos by our dear friend Anne Nunn.

A Reflection of Aching Joy (A Poem for Jack)

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Update: The Facebook version of this video went viral, hitting 1 million views in 4 days, and going on to get over a million more. On the original thread, scores of parents began posting photos of their own autistic children; their “beloveds.” It was a beautiful and inspiring thing. You can visit that thread and add to it here.

This is an original poem and video that I made with my buddy Robert. He’s an extremely talented photographer and composer, and he just got a drone, which we put to good use on the magnificent Seal Rock beach in Oregon. I hope it gives you a better glimpse not only into my inner world, but into the life and personality of Jack. I’ll paste in the text below.

A Reflection of Aching Joy

What do the waves mean, son of mine?
These swells of salty outrage
Over which name tag you ought to pin to your chest:
Are you autistic? Or do you have autism?
Or are you merely affected by this condition,
This blessing or this blight?
With ever shifting definitions?
Who’s right?
I don’t know, and I’m weary of caring.

What do the waves mean, son of mine?
I watch you play tag
With those frigid foam daydreams
As they grow and progress to your toes,
And for an instant, I see them—
Sandcastle Visions
of a typical future.
The kind with graduations
and nuptuals and…
simple conversation about summertime.
But the wave retreats… Recedes… Regresses…
And again your voice is lost in recesses
Of silent staring at meaningless crashes
Of water upon on the sand.

What do the waves mean, son of mine?
I watch you flap your hands
In sines and in cosines,
Over shapes and colors sending shocks of sheer delight.
We’ve tried to flap them with you,
But the magic eludes us,
Our experience excludes us,
From the poems of your palms
And the fables of your fingertips.

What do the waves mean, son of mine?
The brain doctor shrugs at the ripples in your scans.
What mysteries lie beneath
The tranquil surface of your sea?
Are they epileptic jolts
That still your tongue
From singing those melodies you can now only hum?

Sometimes I flail in these oceans uncharted,
And sometimes I swallow the sea
But oh, my dear boy,
How you dog paddle!
Can you teach me how to wade these waters
with winsome eyes
And a laughing chin?
Can you show me how to swim
Shirtless and shameless
In my own pasty skin?
Can I, too, blink away
the incessent splashes
And errant sprays
That haggle over your name?

Because you are not a disorder, my son,
Not a blue puzzle piece
On a clinical spectrum.
But neither are you normal,
You’re a piece of God’s own daydreams
A reflection of aching joy.
No, you’re not normal.
You are… beloved.

#Blessed in the Land of Unanswered Prayer

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Yesterday, I read this heartfelt post by Phoebe Holmes, the blogger behind Herding Cats. Like me, Phoebe is the parent of special needs child, lives in the Pacific Northwest, and laments the exuberant overuse of hashtags. Here is an excerpt:

I see this all the time. People who are all “God answers prayers!” and hashtagging photos with things like #miracles and #blessed and all that. And I can’t help myself, I roll my eyes.

… And I wonder… what must they think of us? I mean, if praying to God fixes things in their life, what am I doing wrong? Why is Maura still the way she is? Why didn’t God answer my prayers with her?

I wonder, do they all thing I’m not praying right? That I’m not a good enough Christian? I mean, back in the day, if you had a child with some sort of problem, it was seen as a punishment from God for the sins of the parents. Do they think my child’s health status is because of a lousy prayer life? That I should find Jesus and have a talk with Him about things, and then poof! My daughter is healed.

Good stuff, right? I mean, you might not agree, but she gets full marks for honesty. Haven’t we all felt this way?

There are two issues she raises that I want to address: the  meaning of “blessed,” and the implications of unanswered prayer.

First, I am going to come right out and say that I am blessed, but not in the way you might think. My life is far from perfect. I have experienced my share of heartache and hardship, and I’m still waiting for God to answer my prayers for my Jackson.

Even with those prayers unanswered, however, I still say I’m blessed.

After all, I have Jackson. He’s my son. I’ve got four other amazing kids, too, and a wife who has stuck with me for seventeen years. I also have a steady job, a house, and I live in one of the prettiest places anywhere. And you know what I’ve done to be so blessed? Nothing. I don’t deserve any of it.

Does that mean God is biased toward me? Certainly not. It is unfortunate that so many people think He rolls that way:  their business is doing well, so God must be endorsing their practice; their kids are healthy, so they must have prayed for the right amount of time; they experience an unexplainable positive turn of events–a miracle, even–so God must like them extra.

It’s just not true. God doesn’t play favorites. “The rain falls on the just and the unjust alike.”

Rain is a blessing for parched crops, but a curse for flooded streets. In short, there are too many factors we can’t see. We didn’t call down sickness or neurological disorders on our children, and neither do we pull down a forcefield of health and riches. Reality is far more complicated than that. Life just happens sometimes.

When I say I am blessed, I simply mean I am thankful. Most people do, I think. If every good and perfect gift really does come from the Father of Lights like the scripture says, I can look for all the good things in my life and marvel with gratitude. In fact, as a believer, this is my responsibility.

When Jesus used the word “blessed” in His famous beatitudes, He was making an even greater point: God’s face is turned toward all of us. His kingdom has come even to the poor, the mourners, and the persecuted. All of us are #blessed.

So why the unanswered prayers? Why does my blogger friend feel so forgotten by a God who is supposed to be good above all things? Why has my Jackson’s language gone away again? Why is there epilepsy? Why bloodshed? Why cancer? Why AIDS? Why terror and hate?

My answer, I admit, is radically unsatisfying:

I don’t know why.

I don’t know why it pours when it rains. I don’t understand the flooding. I don’t know why this one gets breakthrough while that one doesn’t. But I know we can’t pull a lever and win his favor. As C.S. Lewis reminds us, “it isn’t as if He was a tame Lion.”

So I stand next to Phoebe with shoulders slumping at all the death, all the sickness, all the brokenness of this world, and all the brokenness inside my own heart. I want it all fixed. I want God to put it back together. And on the great day of resolution, I believe He will.

For now, though, on this side of eternity, we go on grappling. We research. Like the persistent widow, we ask, then we ask again. We pray and keep on praying. Who knows? Maybe He will finally answer us with an unexpected breakthrough. If that happens to us, we ought to celebrate. It’s only right. Hashtags away!

But what if it doesn’t happen for us? What if it happens for someone else? Herein lies the challenge.

We will want to roll our eyes, to torpedo their hashtags, to resent their gain, as if it has anything to do with our loss. That link, however, exists only in our minds. We can’t pin our disappointment on the joyful.

The Apostle Paul offers a different course of action. He says to “rejoice with those who rejoice, and weep with those who weep.” Who would have thought the rejoicing part would be the harder of the two?

No, it isn’t easy, but there is a new strength that comes when we celebrate one another’s victories. It is a painful brand of thanksgiving, but it is worth it. Community is born out of such sacrifice. Family happens here.

And when the party is over, when the “congratulations” comment threads die down, we can return to God to remind Hm of all the things left undone.

“God, I am still hurting. Still waiting. What’s taking You so long? Do you still see me?” God invites us there, to that raw and prayerful place, so we can pour out all our frustrations, all our anger, all our confusion. Our complaints might come out like David’s poems, complete with the snot and the vitriol and the cursing. That’s okay. God meets us there anyway. The Comforter can only sooth our aching places when we actually admit to having aching places.

Indeed, that is where He meets me. And most of the time, His answers comes not in a resolution but in a whisper that recalls the beautiful, throbbing tensions permeating the land of unanswered prayer. Yes, there is pain, but in oh so many ways, I am still blessed.

 

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Photos by my good buddy Robert Bearden

Parenting Dory: An Autism Dad’s Take on Pixar’s Latest Film

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I’m a huge Pixar fan, and I was thrilled to hear reports that the Nemo sequel “Finding Dory” was essentially the story of a special needs child. So I took team Hague to watch it this weekend, leaving only Jackson, my 10-year old autistic son, behind. That sounds ironic, I know, but Jackson hates the original film. We think the sharks scared him off. Anyway, we loved the movie, and I want to share my perspective as an autism dad.

Ready? Good. SPOILERS AHOY!

***

Dory is, of course, the friend of Nemo and Marlin, and she suffers from short-term memory loss. This film flashes back and forth between Dory’s childhood and her new quest to find her parents.  As a side character in “Finding Nemo,” Dory’s forgetfulness created some delicious hurdles for Marlin, but this time, those memory issues take center stage. The flashbacks were of greatest interest to me. It was amusing to watch Dory continually botch Nemo’s name in the first movie, but it is much harder this time to watch her parents try to protect her in spite of her disability. Dory is an insatiable explorer, after all. A wanderer. This makes her vulnerable, and her parents can only do their best to drill their safety lessons through the gaps in her memory. They can only hope…

These lessons, these endless repetitions, were instantly familiar to me. My heart sank a little as I watched the faces of her parents struggle to stay optimistic, even while their child forgets her instructions for the thousandth time. I get it. All of us with wanderers get it. The dangers outside are all too real. The world is too cruel a place for such innocence.

Dory’s parents know they are swimming upstream in this fight, so they fall back on social stories, hoping that they will be more effective. She has an affinity for shells, so they turn this into therapy, teaching her to follow lines of shells toward home if she ever gets lost. But there is a sense of inevitability in their voices. All they can do is tell her again and again. All they can do is assure her of their love.

But of course, their lessons are not enough. Dory forgets. She gets lost, and the world finds her.

And now no one understands her. She is a foreigner everywhere she goes. “I suffer from short-term memory loss,” she repeats ad nauseum. The fish smile politely, then swim away out of sheer awkwardness.

Indeed, special needs can create a world of awkwardness. Strangers don’t know how to respond. They don’t want to say the wrong thing. So they back away. I’ve seen the way many kids react to Jackson. They look at him sideways, unsure of what to say or do. They are polite, but, you know, it just feels better to be with other kids. Normal kids. Kids who talk and stuff.

But that’s okay. Dory didn’t need a hundred friends. She needed one friend who would stick around. That was Marlin. When she found him and joined his cause something took. He didn’t run away, but became her new reference point. Now, he becomes an ally on her quest.

Our kids, too, need allies. Safe people. They need communities.

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This is community. (Jack being hemmed in by his brothers at the river…

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…and his sisters at Crater Lake.)

 

Yes, of course, all kids need community, but those with special needs need it more. Because, duh, these are special cases. My wife and I are beyond blessed to have such a community with our church family. I don’t know how people possibly get on without one…

But, as we soon learn, even the safest faces can wound a child. In one poignant scene, Marlin loses his patience with Dory’s disability. He snaps at her to go away and forget. “It’s what you do best.” He says it in frustration, not really expecting his words to sink in. She’ll just forget them anyway, right? Except she doesn’t. His words bruise her in a deep place—somewhere in her subconscious. Somewhere below her disability.

This also rang true. Jackson, despite being essentially non-verbal (again…) is listening. Always. And I know he takes in far more than he acknowledges. This remains a sobering consideration: how many times have I lost my cool with him? How many times have I stormed out of the room when his stimms gets too loud, or just thrown down an ugly “go away, kid!” I shudder with shame at the thought. It makes me want to embrace him all the more, and to reassure him time and again that I not only love him, but I also like him. That I take immense pleasure being with him. Those feelings are far more real than any fleeting frustration I might occasionally give into. But words aren’t easily forgotten.

Back to Dory… Soon, images and clues begin to filter through the fog of her memory, providing her clues that advance her cause. The more she remembers, the closer she gets.

This development may be the film’s most subtly subversive theme: Dory’s disability really has been a disability.

It’s not a strength in disguise. Dory’s memory loss has been the obstacle that has kept her from her parents, but now it’s fading, if only a little. And what’s more? Her disadvantage has given rise to a new strength: improvisation. Since Dory hasn’t been able to remember, she acts with her gut, often to great effect.

It’s a good lesson. Sometimes a child’s special needs turn into special strengths. Sometimes. But if these needs were predominately advantageous, then a diagnosis would earn a child a cape rather than a caring, understanding community. Lest we forget, special needs are, first, needs.

In the end, Dory requires more than improvisation to find her parents. She also needs a few good memories to come back, and a few good friends to come along. That combination does it at last: Dory is found. Or rather, Dory finds.

My son’s disability, like Dory’s, is an actual obstacle. It does no good to sentimentalize it.

Something has stilled Jackson’s tongue and confused his brain. We don’t know whether it’s his autism or some form of epilepsy or something else. We’re testing it all right now. But the diagnosis never was the point. My son’s value was never rooted in his abilities in the first place. He is not “special” because of his autism or because of some viral-video-ready talent that has popped up in lieu of communication skills. No, he is special because he’s our son.

Years ago, my wife started a blog which she called “Finding Jackson.” It remains an apt title. Our son’s autism was regressive. He was in full bloom before he went into his fog. And even though he’s broken through that fog in many ways, we are still in the process of finding him. We see the helpless expression on his face every day and miss his conversation. He wants to say more. We can see it on his face. He wants to tell us what troubles him. What delights him. He wants to let us in on his jokes, his irritations, his affections. But his mind just won’t allow his body cooperate.

So what does a special needs parent do? We heap love on him right here. Right where he’s at. And then, we do what Dory’s parents taught her: We “just keep swimming, just keep swimming.” We keep trying to find him, because I promise you, he’s trying to find us.

 

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An Ovation For Mrs. E. (And all Special Ed Teachers Who Go Beyond)

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It was a cool February evening, and Jack was running around shirtless, ignoring the Super Bowl festivities in the living room. It was also the day after his birthday. The boy remembered what happened two years earlier when he turned eight: snow fell on the valley. The angels had gifted him a white blanket of wonder that had lasted several days. It was a present we haven’t yet matched. They set the bar too high.

Still, he seemed grateful enough with his new Monster’s University read-along book and CD, and was meandering to and fro in front of the game, flapping his socks at anything he found interesting.

The doorbell rang.

“Oh good, you’re here,” the familiar lady said when we greeted her. She waved for her husband to come over. He carried something large in his arms. A white chest.

“Jack, Mrs. E. brought a present for you,” we called.

IMG_0064He came over, eyeing his favorite teacher with only a little out-of-context confusion. They opened the chest together.

“You brought him snow?!?” Sara and I exclaimed.

I’ve got a friend from Papua New Guinea who, in joyful moments, used to say, “If I was a dog, you should see my tail.” It’s one of my favorite of his many native phrases. Dogs smile with their entire body. And Jackson, in moments of exultation, does the same.

You should have seen his face erupt in awe. You should have seen him jumping up and down flapping the snow at humming-bird speed. You should have seen him sprinting zig-zags around the house in barely containable laughter.

“Jack, are you happy about the snow?”

He could only answer with red faced giggles; the kind where you run out of breath and have to gasp for more air. It went on for days.

That gift encapsulated the beauty and care of the fantastic Mrs. E. She taught our boy for the past four years, working with him one on one through endless hours of math and music, reading and recess, but her gentle care for him never stopped at the 2:30 bell.  She never accepted Jack’s rebuffs, and oh, does he rebuff! Our boy has perfected the use of the A-card. He often hides his capabilities from his teachers, pretending not to know the answers. Mrs. E. never accepted that. Rather, she would text us late into the evening, asking questions, probing for new ways to challenge him. To break through to him.

And break through she did.

Jack knows how to add and subtract now. He knows how to put sounds together to read words. There are a host of lessons—academic and social—that our boy has learned only because Mrs. E. cared enough to look past his protests and apply the right amount of pressure.

Why has he responded so well to her? Part of it, I’m sure, was sheer personality. She’s impossible not to like. Her spirit is both fun and gentle, and kids like him pick up on that more easily than the rest of us. But it can’t be that simple. Lots of people have great personalities. Only a precious few can “get through” to individuals the way that Mrs. E. did.

No, I think it was this: she laughed with him. She took fun pictures of him on field trips and sent them to us so he could look at them later. She sent him videos of her and her husband with Lightning McQueen on their vacation to Disney Land. She delighted in him.

Rather, she chose to delight in him. And he could tell.

Of course, she’s not alone. All of Jack’s teachers and aides have been terrific. The whole school has shown extraordinary kindness to him, and the administration has prepared the entire student body to understand some of the mysteries of autism. The other kids greet him every day in the hallway, and they celebrate when a rare word escapes his lips. It’s a beautiful culture the staff has created, and one which makes us rest a little easier in our son’s future. He will have people looking out for him as long as he lives in this town.

He will have to move forward, however, without his beloved Mrs. E., who retired earlier this spring due to health issues. Her absence has been felt by all of us. Jack has regressed these last months. Most of his language has gone away again, and we’re running a battery of neurology tests to figure out why. It’s not her fault, of course. Jack’s regression began before she left. But he misses her. School hasn’t been the same for him. Not by a long shot. She was more than a teacher.

Some will argue, “why should we be so impressed by someone who simply cares our kids? Shouldn’t we all be doing this?” And yeah, of course we should all care. Of course we should all take a special interest in people, especially those with special needs. But what of those who know go beyond what they merely ought to do? To call that type of care “pedestrian” is a great insult.

We should never shrug at the devotion of those who love with extravagance.

We can’t all deliver chests of snow to our young friends who crave it on their birthdays. But perhaps we can aim to love at least one person in the same way. And the only way to do that is to learn the delights of those we aim to love.

That is why Mrs. E. succeeded. Indeed, that is how all of our greatest special needs therapists and teachers break through to our children. And that effort is worthy of a standing ovation.

Thank you, Mrs. E. For everything.

A Letter to My Autistic Son on his 10th Birthday

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Dear Jackson,

Ten years ago, I was watching Super Bowl 40 when your mom went into labor. The silly woman… did you know she told me we could watch the rest of the game before we left for your delivery? She really did! But I knew that decision might come back to haunt me, and I was eager to see you anyway. My first boy.

We left during the game and met you a few hours later. We gave you the middle name Landry after the legendary Cowboys’ coach, because football is a part of Hague culture. Part of my world. Like every dad, I had visions about sharing my world with you. We would watch sports and read Narnia, and you would have lots of friends to better annoy your sisters.

By now, you know what happened next. When you turned two, you lost all your words, and we felt like we lost you. We couldn’t bring you into our world. That’s when we began searching for ways to reach you. To connect with you. We’ve been on that same journey for years now, and the truest piece of advice we have heard was this:

“Stop trying so hard to bring him into your world. Come into his world instead.”

We’ve done our best to follow that advice, son, especially this past year. And right now, on the eve of your 10th birthday, the most prominent features in your world are your movies. I confess, I don’t understand the appeal of all the DVD covers and screenshots that adorn our living room bookshelves, but that doesn’t matter. You do. You line them up, you flap them, you quote them, and you sometimes even watch them.

It is only natural, then, that these movies have become our access point into your world. Into Jackson-ville. We have become experts in Pixar and Dreamworks. We watch everything from Monsters to Minions, we do the voices, and we create all manner of fan art for you. And I suspect that you love it.

Last month, you asked a random question. “Cars 2 or Despicable Me 2?”

You might have been talking to yourself, but Jenna and mom took it as a question.

“Well I don’t really like Cars 2,” mom said.

“Yeah,” Jenna agreed. “Despicable Me 2 is funny. Cars 2 is not as good.”

You responded with this crystalline jewel:

“All right, just because everybody hates it doesn’t mean it’s not good!”

The house exploded in laughs and wonder. You may not be classified as “non-verbal” anymore, but you don’t ever string that many words together to make a sentence. We knew right away that you were quoting Gru from Despicable Me after he tasted Dr. Nefario’s new jelly recipe. You even delivered the line in Steve Carrel’s vaguely Russian-ish accent.

Scripting movie lines is an hourly occurance for you. What excited us was the question of timing. Had you just re-purposed that quote for your current conversation? Were you using Gru’s words to defend Cars 2? Had you just found a way to communicate to us using your own favorite things?

Maybe some day you can set us straight on your intentions, but for now, it takes faith. And I’m okay with faith. There are plenty of reasons to believe.

* * *

“Come on, Jack. It’s bed time,” Jenna said.

You resisted for tradition’s sake.

“Jack, let’s go. I’ve got to brush your teeth.”

You put on a pouty expression and gave another quote from an agitated Gru: “You’ve got to be pulling on my leg!”

* * *

“Jack, do you like school?” mom asked early one morning when the house was quiet.

“No, okay,” you said. That’s just how you say no.

“Why don’t you like school, bud?”

“Awkward,” you said, lifting the line from Rio.

“Oh, is it awkward at school?”

Your voice went low as you answered her. “I… awkward.”

* * *

These are the moments that make us believe you know exactly what you are saying. You are in there, son. We know you are. We know that there is more to your world than we ever could have imagined.

Do you already understand all our conversations? Do you just sit back and take it in? Do you feel frustrated that your body has trouble making words of its own? And why do you like Cars 2 so much? Is it Mater? Do you relate to him? Do you feel… awkward?

My dear boy, your family cheers for you. We want so badly to share your frustrations, to join your laughter, and help shoulder your fears. We want to experience the beautiful messiness of life with you. And it is beginning to happen. Thanks be to God, it is beginning.

* * *

When I got in the van you were waiting for me in the front seat, all buckled up and giddy. I was taking you to get McDonalds fries, your favorite sticker-chart reward. When I started the van, you looked up at me with one special request: “Hiccup?” You asked.

I launched right in, doing my best impression of the Stoick the Vast from How to Train Your Dragon. “Hiccup, son! We’ve got to gooo gaaaate yer fraaaainch friesss!”

Your eyes glowed. I know why. The scene is made up, but familiar. A boy and his father.

“I don’t know, dad…” I countered in Hiccup’s ever-quivering voice. “What if a dragon takes one?”

Your smile stretched as I switched back to Stoick.

“They woooon’t, son! Not if ya eeeeat them fossssterrrrr!”

You fell apart in laughter even before the tickling began. We shared every drop of that moment.

There are so many moments. So much laughter is ours now.

Your future can look however you want, son. Jackson-ville is your world after all, not mine. But I’m so glad you have chosen to let us in. Thank you for letting us in.

We love you, buddy. Happy Birthday.

Click here to read the next birthday letter

And if you liked this post, check out my book, Aching Joy!

When our Prayers Fly like Pebbles From a Widow’s Hand

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There is a widow hiding outside the judge’s bedroom in the dead of night. I’ve seen her. Don’t worry, she isn’t up to anything salacious. She just wants him to hear her case. As if 2 a.m. is an opportune time. As if this particular judge would listen at any hour. She’s exhausted, leaning up against a tree in the shadows with a fist full of pebbles, but she’s not going away.

It’s dangerous. It’s stupid. Someone else might see her and haul her away. Yet there she is, sizing up the wide window across the lawn just above where the old man sleeps. She feels a stab of guilt for even knowing that fact. It took some snooping. What must the neighbors think?

She takes a breath, wipes the hair out of her eyes, cocks her arm back and lets the stone fly.

Tap.

She holds her breath. Did a light just come on? For a moment, she panics and hurls herself back into the shadows. What if the man sees her? Wait–that’s the point of this entire plan, isn’t it?

The widow makes her face hard. No desperation. Just focus. He can’t outlast her. That is the message. This issue is not going away, so he might as well give in.

She steps out of the shadow. Slowly. The curtain inside rustles, then yanks to the side. And there he is. Eyes sunken. Hair in knots. He’s wearing a bathrobe and waving a white flag. He tells her he will listen. For the sake of his own sanity, he will give her a hearing.

And the great Storyteller says,

“Do you hear what that judge, corrupt as he is, is saying? So what makes you think God won’t step in and work justice for his chosen people, who continue to cry out for help? Won’t he stick up for them? I assure you, he will. He will not drag his feet. But how much of that kind of persistent faith will the Son of Man find on the earth when he returns?” (Lk 18:6-8 MSG)

I always thought this story was about the judge. About how he’s different than God. He’s arrogant and unfeeling. And if even he will give in, than how much easier will God give us breakthrough?

I was wrong. This story isn’t about the judge. It’s about me.

I’ve been praying for breakthrough for a long time. I want to have a conversation with my autistic son. A real, honest-to-God “how was your day, buddy? // not bad, except i skinned my knee” exchange. I want to cut through all the scripting gibberish and hear where he is aching. Is it his legs? His head? His heart? I want him push pause on all his glassy-eyed flapping so he can finally answer when I ask, “what are you thinking about, pal?”

I’ve been praying for years. Even though we’ve seen some growth, we are still miles and miles from any kind of language that ushers in relationship. And relationship is everything.

The widow’s tale, then, is my story. And if you still pray unanswered prayers, it’s your story, too.

The challenge for us is simple: many years from now, at the end of everything, will people like us still retain the courage to throw our pebbles? Because faith is sometimes measured in the asking. Pestering judges is not a trait of weakness but a badge of high belief.

Wear that badge, friend. You hurt, but you have not lost heart. How do I know? Because you’re still asking.

It’s been six years, and I’m still here, too, waiting behind my tree. Some nights I just lean up against the trunk and go to sleep. But not tonight. Tonight I remember my son and take aim at the Judge’s window. He’s a good Judge, this One. He hasn’t answered me yet, but He’s a good Judge. And maybe tonight is my night…

To Know What Would Have Happened

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I will spare you the melodrama and tell you plainly what happened last weekend. It was one of the scenarios parents of autistic kids fear most. For the first time in two years, Jack ran off.

We were having a perfect Saturday. The kids were playing outside in our freshly cut lawn, Sara was making lunch, I was writing fiction, and Josh Garrels was crooning in the background about “Home.” Then, my phone rang. It was my buddy Aaron.

“Dude, I just got Jack! He was running on the other side of 6th street.”

I bolted up and, for an instant, found myself scanning the room for him against all logic, as if my friend had found the wrong kid. Because Jack wasn’t gone. He couldn’t be gone. He was in the backyard…

“Jack got out!” I yelled for my wife to hear.

They were five blocks away. I ran outside to cross the street, but I had to wait for an inexplicable line of traffic. On my honor, there were more cars than I have ever seen on this street. And Jack had just crossed it…

Sara grabbed the van and picked me up two blocks down. We drove the remaining three blocks and found the two of them waiting across another busy street at a fenced in playground next to some basketball courts. Jack was standing atop the slide, shirtless as always, wearing elastic pants that were sagging halfway down his bum. He was clearly proud of himself.

“I didn’t know where else to bring him,” Aaron said. “He was just running down the sidewalk.”

“Shhh. Quiet,” Jack was scripting when he saw me. It was a line from Monster’s University, his latest obsession, but it was also a clue into what he had just done. He had sneaked away on purpose, just like Mike and Sully in the Monster’s library, and he thought it was funny.

We promptly installed an extra noisy alarm on our front door, put a new lock on the back gate, and have been scouring the internet for GPS bracelets—the kind that don’t come off without a fight. We also figured out where he was headed that day: to a house where he had recently seen a DVD case that he wanted (from the first Monsters movie, of course). He was running in the right direction, but he had another nine blocks to go.

Two words dominate a parent’s mind in moments like that: “What if?”

What if he had taken a different street? What if Aaron hadn’t been walking through his front yard to spot him? What if some creeper saw him? What if the drivers on 6th had not seen him? What would have happened?

And then I think of the words CS Lewis spoke through Aslan the lion: “To know what would have happened, child?… No. Nobody is ever told that.”

I have often read that scene and wondered if it was true. Is no one ever told? And is there not some benefit in visiting the specters of alternate history?

This week, my mind is settled. No, there is no benefit. Speculative horrors are an inevitable prison for those prone to worry. Negative fantasies—future or past—leave no room for gratitude or peace. When I do anything more than acknowledge them, I cannot stop and take a deep breath. Even the happiest, sun-shiniest days become tainted with two concerns over which I have no control: things that might have happened, and things that still might. Some day. Any day now.

So how do we recovering pessimists vanquish these ghosts? By focusing on what actually is.

This story of Jack’s escape, it is, truly, a happy story! My son is safe. He went on his own adventure. He crossed two busy streets without incident, and just so happened to walk by the house of my one of my dear friend who already knows and loves him, and who just so happened to be working in his front yard.

I must take note of these positive plot twists, and acknowledge that Providence Himself must have been watching over him that day, coaxing him to safety, whispering, “Shhh, quiet. You know what? I love you, son.”

A Foot in Both Worlds: My Interview with Stuart Duncan

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If you have spent any time in the autism community online, chances are, you’ve heard of Stuart Duncan. Even before he created the now celebrated AutCraft — the world’s first Minecraft server dedicated to autistic kids — he was blogging all over the place about his own experiences as an autistic father of an autistic son. Those experiences have given him a foot two communities that often misunderstand one another. I figured Stuart would have some excellent advice for us Neuro-typical parents who are raising autistic kids, and he did not disappoint. Here is my interview with blogger, advocate, and all around great guy, Stuart Duncan.

Your son Cameron was diagnosed with autism when he was 2 1/2, and you say your experiences with him led to your own eventual diagnosis at 36. How did that happen? What kind of commonalities did you see between the two of you?

It’s funny but it was in all the ways that made him different, the signs that helped me to notice he had autism that I had never seen in myself until I was laying awake one night thinking… that reminds me of me when I was young.

When I would have an important talk with him, he couldn’t look at me. He’d keep his head down or stare at his feet as he kicked them. I did that. His teachers read a book to the class in September and he remembered it word for word in April yet he couldn’t remember the instructions that his teacher gave him 10 minutes prior. I did that. The way he’d focus on one topic and not be able to talk about anything else, even when others would try to digress the conversation on to something else, he would stay strictly on topic. I did that. The way he preferred to stay inside, in his room, by himself, content to just sit and play in one spot for hours… I did all these things.

As I laid there, memory after memory flooded over me all the way back to when I was 2 years old and each of them making me think… that explains that!

The more I thought about it, the more it made sense and over time, I was convinced that I most definitely did have autism as well, Aspergers at least. But I was still reluctant to say it to anyone unless I could have it diagnosed by a professional. And so, I did.

Interesting. A lot of autistic kids want to be left alone like you did, but we live in a world that wants them to be social. How did you deal with that tension as a boy, and how do you help your son work through it?

I had a bit of a dual life. My school life I spent in my room, on my own. I had few friends at school and no friends when I wasn’t at school. I had everything in my room that I needed to occupy my time and rarely left it.

In the summers though, it was a completely different story. I spent my summer’s at my grandparent’s hunting & fishing lodge where I worked in the restaurant and trailer park, around people just about the entire time. I learned to socialize and even become quite popular and well liked. I had no other real choice. However, when it did get to be too much, being so far remote, I was able to retreat into the woods to my favourite spot where I could just sit by the lake and relax for a little while.

It was chaotic in the summers and didn’t always go well but I always found time to take some quiet time for myself.

For Cameron, it’s tougher for him since he shares a room with his little brother and doesn’t have the same sort of freedom to just wander off into the woods. But we still make sure to give him that time and space as he needs it. I keep his little brother out of his way when he goes off to his room for alone time and we never rush him. There have been times when we’ve even had parties, like birthday parties, where Cameron will just disappear for 20 minutes or so. We explain to the other children that he’ll be ok and be back soon and sure enough, he rejoins the party as good as ever.

It really is something that more kids should be able to do I think, rather than let the tension and anxiety build up.

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Back when you were a kid, there was very little understanding of autism in most circles. What are some positive changes you have noticed, and what would you MOST like to see change in our community?

Probably the best thing, which isn’t really a change in the community so much as an external factor which has improved things, is social media and how it’s allowed parents to connect and share stories and advice and be able to relate.

In the past and still to this day for many people, an autism diagnosis would often mean isolation… Now though, all they need is a social media account and there are literally millions of other people who know exactly how they feel that they can connect with and immediately have someone they can talk to any time they need them. It’s that sharing of information that has benefited everyone the most I think.

Unfortunately most of the dialogue that’s been taking place whether it be on blogs or in social media has been dominated by parents and in recent years, autistic adults. Often times this results in some rather large disagreements and those can get quite ugly sometimes.

What I’d like to see is a larger stake of those conversations being given to autistic adults that are also parents of autistic children. I really feel that while parents and autistic adults argue over who should be listened to more, those that fit into both camps are really being ignored completely.

I think that often comes down to there being extreme view points from one group or the other and that the autistics that have autistic children are often able to see these situations from both perspectives and end up offering up suggestions that offend neither but also appeases neither as well. This middle ground of understanding is extremely valuable but often ignored.

We’ve heard from doctors for years and learned very little. Then parents discovered that they could be heard via blogs and articles, and people started learning much more. Then autistic adults began to take control of the conversations about autism via social media. These have all made such a huge difference but now I feel like it’s time to bridge the gap and start paying more attention to autistic adults that have autistic children.

This is precisely the reason I wanted to talk to you. Between these two communities, so much gets lost in translation, and you are a gifted interpreter for all of us. And I, for one, need to learn more from the adult autistic community. So help me with that: I am the parent of a severely autistic child, and I have dealt with all the meltdowns, self-injuries and various difficulties of having a non-verbal son. What would you, as an autistic, like me to better understand about my situation?

My advice for any parent, no matter how autism affects their child, is to never give up on the hope and the faith that things will get better.

Thanks to these social networks and the Internet in general, we see more and more non-verbal autistics finding their voice whether it be by actually talking or alternate forms of communication and once that happens, their lives and the lives of everyone around them transforms dramatically.

It’s easy to think “everyone but me” there’s no reason that it can’t be you and your children too.

Also, even if not, these stories teach us that no matter how unlikely it may seem, your child is aware of your presence, your words, your efforts and your love. Even for those that can communicate quite well, people still throw around this stereotype about lacking empathy but I have never met anyone with autism that isn’t very aware and very appreciative of the love that their family gives them.

It’s your unconditional love and support that gets both you and your child through the toughest of times.

Treat and think of your child the same whether they have “severe” autism or “mild” autism or no autism at all. Talk highly of them, love them, do your absolute best for them and never speak as if they’re not there, or not listening, or a handful or now the person you want them to be. Because when you boil it all down, no matter the circumstances, they are your child and true love comes without conditions.

Excellent perspective. Thank you, Stuart. And thanks for all you do for our kids.

For more about Stuart, check out his blog, and of course, check out Autcraft.

You can follow him on Facebook and Twitter (@AutismFather).

That Time I Had Coffee with My Two Selves

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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.

A Letter to My Autistic Son on His 9th Birthday

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Dear Jackson,

You turn nine tomorrow, and there is one moment from this past year that I want both of us to remember always. We were at the lake. The one where we can see the mountains up close. Your brothers and sisters were splashing around, soaking in the afternoon, but you weren’t having any of it. You were standing on the shore looking concerned and very dry. This had been your way for the past several months, which was sad because you love the water. Always have. But something had changed.

“What’s the matter buddy?” I asked, not expecting you to answer. You like to keep us guessing, see.

But this time you did answer. You pointed to the water and spat out three panicked words: “Great white shark.” Because you had been watching Wild Kratz, see…

It was a sad, beautiful moment for us all. Sad because we saw you were afraid, and beautiful because you finally gave us the answer to our long-standing riddle.

I picked you up your tense little frame and tiptoed through the shallow water, assuring you that there were no sharks in the lake. With every step, you started to release your breath. To believe me, little by little. To exchange those irrational bits of fear for the pieces of joy they were keeping you from. When that transaction was complete, you spent the afternoon glorying in the lake like a river otter.

This is my story as much as yours.

I have my own irrational bits of fear that have kept me from joy, and those fears are about you.

10689832_10204435416837159_1226580369505442984_nYou see, when a dad discovers that his son has autism, one of the first things he has to learn is to let go of his expectations. And I did. It took me a long time, but I did. I learned to embrace you where you were. To let go of my desire to rush you along in your development. I learned to stop comparing you to the other boys your age, who are playing basketball, reading books, and having heart-level conversations.

I thought that meant I had learned patience. I was wrong. I had simply learned not to hurry. But that is not the same thing as patience.

Let me explain: Last week, I met a family who had a boy like you. An autistic boy who did not use words, but kept to himself and his chosen comfort toys. They were sad, just like I am sometimes, because they wanted relationship with him. But when he was seven or eight, something amazing happened: he started talking. He started relating. He went to school and learned all the same things as the other boys his age. And now, he is a teenager and has a bright future ahead of him.

When I heard their story, I thought of you, of course, and I wondered, “What if Jack were to break out of his box?” And immediately, I felt a panic like you did on the shore of that lake. I tensed up and pointed to the water, yelling: “Hope! Hope!”

What an ugly revelation that was. After all I have learned, I am still afraid to commit to believing in your eventual breakthrough. Hope, to me, is a scary animal with teeth in it.

And that is why I now believe my patience has been false.

A man who waits without any expectation is not being patient. He is simply loitering.

I have been a loitering father. As a result, I have cheated you out of well-deserved praise, and cheated myself out of joy. I have glossed over the very real strides you are making. You are interacting with other people far more and far better than ever before. You have, by and large, stopped injuring yourself. You are learning and deploying new vocabulary to the point that your mother just said to me, “he wouldn’t be classified as non-verbal anymore.” She is right.

And then there’s something else which I confess I never saw coming: you are learning to read.

Last night, you were getting into the van and you dropped a homework paper. I picked it up and motioned to the big black letters at the top. “What does that say, Jack?”

You pointed to each word as you spoke:

“I. Can. See.”

Yes, you can. I want to see, too.

I want to see forward without fear. I want to be the kind of father who not only loves his son through the challenges, but who believes he will overcome them, too. I want to be like the early riser who faces east and waits for the dawn with certitude. I want to anticipate the inevitability of our sunrise–yours and mine alike. In our breakthroughs. And despite my fears, I know this is a good and reasonable hope, because the same God who programed the sun also programmed us with a deep desire for wholeness. And why would He give us such desires unless wholeness was a real thing?

It is coming. Hope is rising.

My son, let me begin anew: You are winning. You are kicking down the doors of your box. I can see it. I couldn’t be more proud of you and all the strides you have made. And this year… this is the year we overcome. Together.

Happy birthday, my boy. I love you.

Dad

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A Letter to God Concerning the Bruises I Saw on My Son’s Head

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Dear Father,

You know that I’ve tried to pray for my son, but I can’t seem to complete a single sentence. My words run out, and I resort to a weak, babbling, “Oh God… Oh God…” that fades out when something shiny distracts me. Sorry about that. You deserve better, I know. Sometimes, when I can’t figure out what to say, I have to start writing, and let my fingers help me sort it all out. So I’m going to try that right now as I fly home from New York.

Oh God… I’m so confused.

My words have run out because I don’t know how to pray for Jack anymore. Shortly after his diagnosis, it was an easy and obvious prayer: “Lord, please heal my son.” But then I started to learn about this thing we call autism, and the more I learned, the more aware I became of my own ignorance. I grow more ignorant all the time.

I’ve learned that autism is not a disease, but something else. I don’t know what that something else is. In some sense, it is a part of him. Some say it is an integral part of his identity. Is that true? I would be okay with that, I think, if he was just “different.” Really, I think I would. But you’ve seen us the past few weeks. You’ve seen us installing the new alarm on our door to keep him from wandering. You’ve seen the black bike helmet we’ve been strapping onto his head to keep him from hurting himself during his meltdowns. And you see the bruises he gave himself at school on Wednesday. They couldn’t get the helmet on him quickly enough. When I saw them on Facetime, I knew exactly what had happened, and it about tore me up.

This is all new territory, God.

I am afraid. And I am not okay with any of it. Jack is not just a quirky kid whose mind works in it’s own exciting way. I could accept quirky, but this? Something is wrong. Something inside of him is not working the way you designed it to work. He doesn’t have the words to tell us what troubles him, but whatever it is, it is so extreme that he has decided that the best way to deal with hist frustration is to injure himself.

Dear God, this is no the way you designed him, is it? To live with unbearable frustration that turns to pain? Is that part of the identity that you have planned for him? Because I’ll be honest: if it is, well… I just don’t know how to deal with that.

I have always believed the world is broken, and that you didn’t break it.

That you are the great Restorer. That your Son came to make all things new. This has been my conclusion after years of study and thought, but I have to admit, I am bias on this point, because I desperately want to believe it. I need to believe that You are truly, wholly good. That you don’t desire innocent children to live frantic and bruised. That you don’t lock up a boy’s future behind impaired speech centers in the brain.

I don’t know how to help my son, and I don’t know how to pray. I can’t just pray “heal my son” because I don’t even know what that means anymore. I don’t know what anything means.

So I won’t pray anything too bold for now. Instead, I will just remind that your name is Immanuel, which means “God with us.” Come close, Immanuel. Prince of peace, draw near to my son, and give him rest.

Amen.

Photo courtesy of Kanegen under Creative Commons License

Autism, Baseball, and the Whispers of Beauty

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Sometimes a moment grabs you by the collar like Liam Neeson, throws you against the wall and demands, “remember this” without giving any further explanation. I had one of these moments two weeks ago at a minor league baseball game.

Jack (my 8 year old autistic son) knows nothing of baseball, except that you’re supposed to sing “Deep in the Heart of Texas” during the 5th inning. He learned this from a video on my phone, taken at a Texas Rangers game in Arlington two years ago. Since they, uh, don’t sing this song at Eugene Emeralds games (jerks…), we were concerned that he might be disillusioned. He was not. In fact, Jack watched all 9 innings of baseball, ate popcorn, muttered movie lines to himself, and laughed at the fluffy green mascot. He was content. We were content.

It wasn’t until after the game that his OCD kicked into high gear. The field was calling to him. So he ran down the stairs ahead of Sara down toward the dugout where some Emeralds players were signing autographs. There was a pitcher who saw him and understood at once. Sara tried to get a picture of the two of them, but Jack was not interested. The man smiled and signed a ball for him, but he wasn’t interested in that, either. In fact, his response was to take the ball and throw it onto the field.

The pitcher just grinned. “He’d better go get it.” Jack was already gone.

That’s when we spotted him.

I was fifty yards away with my other four kids and a small band of friends. And there was my son, marching toward the pitcher’s mound, where the grounds crew was already tidying up.

“Jack’s on the field!” I yelled.

The boy was on a mission. When he reached the mound, he did what he had seen pitchers doing all night long. He threw the ball.

It did not go far. It did not have to. There, amidst the couple hundred remaining fans filing out of the stadium, we cheered like Cheeseheads in Lambeau.

He even gave us an encore, picking up the ball and throwing it one more time.

More cheering. My kids were exploding with jealousy excitement. And I wanted to dance. To enshrine the ball in glass forever. To preserve the memory.

That was my Liam Neeson moment.

I have tried to write about that night for the past two weeks, but I could never explain the impact. Why did it hit me so hard? There was no real breakthrough. Jack did not discover a hidden talent, or find a new passion. He just threw a baseball. It was barely even a sports moment. But there was beauty in it. Unmistakeable beauty.

This morning, I found an answer as I considered the other beauties in my life. The beauty of the Oregon countryside. Of Crater Lake, that impossibly blue pool in the mountain, where snow hides in the shadows of the rockslide walls even in the summer. Or the beauty of music. Of a Civil Wars song, where two desperate voices cling to one another just above a sea of acoustic hopelessness. Or the beauty of family. Of my wife, when she reaches up and pulls out a hair pin, letting her sandy blond ribbons tumble down over her shoulders like Sahali Falls in October.

Real beauty stills our breathing and stops our mouths, but never demands an explanation. We can describe it with poetry and metaphor, but we cannot diagram it with theorems or postulates. Real beauty just is. All we have to do is drink in the moment and listen, because it comes with a promise. A distant promise whispering in the wind: “This is only a taste. There is more…”

Today, I want to be done analyzing. What happened on that diamond was gorgeous. My son on a mission… that was art. And I look forward with a fan’s fervor to “more.”

(Ed’s Note — I think this guy deserves a special shout out: Eugene Emeralds pitcher Cory Bostjancic. You’re not supposed to just let a kid wander out on the field, but a good man knows when it’s okay to wink at a rule. I love how the grounds crew, too, pretended not to notice that Jack was out there. Just a great organization all around. Thank you, Cory!

In Defense of Happy Stories

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My friend Janae only wants to watch “H.E.A.” movies (Happily Ever After.) If it doesn’t end with with the shy guy and the pretty girl riding away on the gilded stallion, she’s not terribly interested. Every time I make fun of her about it, she makes me this falsetto Chewbacca growl and tells me to back off. Nobody ever accused Janae of being a pushover.

“HEA movies” are the bane of postmodern existence, second only to Thomas Kinkade paintings. They don’t win the awards or critical acclaim because they aren’t realistic. Life isn’t all kisses and sighs and sunsets. It’s full of coldness and blood and starvation and cancer. The stories we tell with art should reflect those factors. Besides, it is not nice to raise people’s expectations to unrealistic levels.

There are shorter H.E.A. stories all over the internet now. You’ve seen them. They are tailor made to go viral:

“Dalmatian Puppy Shows the True Meaning of Christmas!”
“Boy Without Feet Auditions for a Tap-Dancing Role, and YOU WON’T BELIEVE WHAT HE CAN DO!”
“Dolphin and Her Former Shark Enemy Finally Meet Face to Face, and we DARE YOU NOT TO CRY!”

Autism parents get more of these than most others, I’d wager, and they usually look something like this:

“Boy with Autism Sings a Michael Buble Hit, and it will BRING YOU TO TEARS!”

Or like this:

“Yada Yada Yada, Something About Carly Fleischmann.”

And you know what I do when I see these? I move on. I almost never click them. Because I am such a postmodernist: I sneer at H.E.A. stories.

These stories come to me face to face even more often, especially on Sunday mornings. I’ve preached openly about my own struggles with Jack’s condition—even stood up on stage and cried like a baby once—and whenever I do, I get a boatload of encouragement from a congregation that has embraced my son. I love these people. But in the midst of the encouragement, I often meet a first time visitor who wants to tell me about a friend’s cousin who has an autistic daughter who was doing badly but now is doing so great, and…

*Eyes… glazing over.*
*Concentration… Waning.*
*Head… Nodding anyway.*
*Keep… Smiling…*

My mind presents arguments against the stories. Every kid is different. They’re not all as severe as Jack. Not all kids have special skills that will “BRING THE AUDIENCE TO THEIR FEET!” Not all kids are going to break out of that non-verbal box they live in.

Nice to meet you, first time visitor, but can’t you see I’m trying to manage my hopes here?

This scenario played out a few weeks ago, but something changed. Just when my customary eye glazing began, I caught myself. This story I was hearing was not fiction. There was a real kid who had real breakthrough. Her parents had probably felt all that I had felt. They were tired of the H.E.A. stories just like as I was. And then… breakthrough.

I forced myself to listen. I forced myself to be encouraged. And you know what? It worked.

There is an inherent weakness in the postmodern insistence on despair, and that is this: the reality of joy. Of breakthrough. Of Good News. Joy flies in the face of our desaturated tragedian lives and emo soundtracks. The major chord has a way of breaking through the dissonance, and it is indeed beautiful.

The happy stories remind me of the childlike wonder of fairy tales. The promise that we can overcome. They whisper to us, as Lewis says, of the mountain where all the beauty came from.

And all of this humbles me. It makes me want to kick a rock and hang my head and tell my friend Janae that I am wrong and she is right. That I need H.E.A. stories as much as I need the sad ones. Because joy is at least as realistic as sorrow.

Walk-Off Moments for Special Needs Dads

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My friend Mark is a great father to three neuro-typical kids, and he is currently floating on the highest cloud in the Dadosphere. His son Zach–a sophomore in high school–just hit a walk-off home run to win the Oregon 2-A state championship. I know, right? A walk-off home run! For. The. State. Championship. I expect Mark to stop smiling sometime in mid to late November.

When my son Jack was first diagnosed with autism, I had to come to grips with the fact we might never share those types of experiences. I hit pause on my inner Sports Center Top 10 highlight fantasies. My visions of him graduating with honors. Or delivering a killer speech in front of thousands. Or standing next to his groomsmen, beaming at his bride.

Every special needs parent goes through that phase, I expect, with varying degrees of melodrama. I might have had more drama than most, because for some reason I thought that I was required to do something catastrophic. I thought letting go meant setting fire to my fatherly hopes–forgetting them, scorning them, and most importantly, feeling sorry for them. But I was wrong.

Letting go demands only the loosening of the knuckles and the opening of a fist.

It requires not the burning of hope but the surrender of expectations. This will be different than what you thought. This will be different than what your friends are experiencing. And you’re going to have to be okay with that.

Timelines no longer exist for us. There is no such phrase as “on schedule.” We embrace Jack where he is at, and we push him to move forward at the same time. Our goal is progress without regard to time. We challenge him to learn his letters and use his words, knowing full well that it might take him years to permanently remember them. Years.

But when he pulls out the right word in the right moment? That’s gold.

Herein lies the inherent advantage of being a special needs father:

We don’t have to wait for the big moments. We get to celebrate every tiny victory.

“You waited for me when you crossed the street? That calls for french fries!”

“Did you see that? She waved at us. She actually waved! Kiss me hard.”

“Why am I drinking champagne before noon? Because he put his poopies in the potty!”

Those celebrations might seem mechanical at first, but they won’t stay that way. I mean it. I can honestly say I know what Mark felt like when he watched his son win the state championship, because my boy pointed at his penguin book and said “Jack and Daddy.” That was his walk-off moment. Our walk-off moment, if I may say so.

I don’t know which comes first–learning to celebrate others’ victories, or learning to celebrate our own–but I know the two are linked. When we laud other families without comparison or jealousy, it makes our own victories at home all the sweeter. And when we enjoy our own children, it makes it easier to cheer on our friends.

We have no idea whether Jack will ever excel in any spectator event. Whether he’ll knock down a trey at the buzzer, or wear a cap and gown, or fall in love. He might do none of those things, or all of them. But for now, it does not matter because those are not his yard sticks. Not anymore. He’s on his own journey. We take progress a day at a time, and we throw dance parties when he gains an inch.

You Have Permission (A Letter to New Autism Dads)

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Dear Autism Dad,

This past weekend, I went backpacking with some friends through Big Indian Gorge in Eastern Oregon’s Steens Mountain. From a distance, Steens appears as a tall, wide rock with some snow on it. A two dimensional cutout along the horizon. But when I started toward it, the entire landscape opened up. Steens is a glorious maze of cliffs and creeks, gorges and waterfalls, aspens and sage. Every simple mountain wall turns out to be four or five layers of rock face, each with its own weathered angles and Instagram temptations that beg to be explored. The sights are as mysterious and beautiful as they are dangerous.

Likewise, this thing called autism–this mountain that has, it seems, picked your family–looks a certain way to you right now. It is large and looming, and you will be tempted to stay at base camp and “let her handle it.” But you’re better than that. And you’re a man. So suit up. Your expectations are already being shaped by many sources: books, family, movies, and blog posts that your friends have shared and tagged you in. That’s one reason you feel so apprehensive. But you love your kid. So you start walking.

You have heard that there will be dangers to look out for: things called IEP’s, insurance companies, vaccines, and depression. You have also heard that there are treasures along the way: miracle diets, adorable “Different Not Less” memes, bio-medical magic bullets, and a mindset called “acceptance.”

Dangers and treasures are real, but they often look identical. You will read about the horrors of vaccines, then about the insidious nature of those who distrust them. You’ll read a post scorning Autism Speaks… just as you’re “lighting it up blue.” You’ll spend a week Googling “Autism Cures,” then you’ll chastise yourself because you looked up “Neuro-Diversity” on WikiPedia. You will continue to love your kid, but you’ll want more for him. You will want to celebrate your child’s differences while simultaneously helping to normalize his future. You may embrace him a thousand times just before you send him to therapy.

And you’ll want to quit, because it’s all too damned complicated.

That simple landscape you saw from afar will have become a wonderland of confusion.

steens2

There is a dirty little secret about this whole thing that you need to know up front. All of those people who are screaming out for your attention–every single one of them–is on his or her own hike. Some are screaming down from a narrow waterfall, “you’ve GOT to try this!” Others are lathering up among the poison ivy, saying “Don’t come this way! Please!” Bloggers hang upside down from climbing ropes about whether to say “autistic” or “with autism.” And they will call down to you, “THIS is the way to see things.”

I’m not suggesting there is no truth on this mountain. There is. But even the experts can’t agree on causes or definitions–the most basic of landmarks. I trust they will, eventually. Just not yet.

Until that day, however, I want you to know this:

You have permission.

You have permission to be lost.

You have permission to not have an opinion.

You have permission to ask honest questions, and to not feel guilty or stupid about them.

You have permission to put your hat over your face and cry.

You have permission to yell at God. He can take it.

You have permission to go into a cave and swear at the top of your lungs.

And you have permission to strip down to your skivvies and cool off in the river when it gets too hot.

But there’s one thing you do not, dear friend, have permission to do:

You are not allowed to lose hope.

Your family needs you. Your child needs you. And he can feel it when you stop expecting him to win.

The hardest part about this hike is its unpredictability. You don’t know what might be around the bend. It could be a thousand foot cliff or a shaded meadow. You don’t know. But that is also the exact reason why you cannot give up: You don’t know what might be around the bend. Your kid has far more passion and ability than you realize, and you simply must give him a chance to use it.

So gear up, friend. Grab a buddy who will let you vent (but not keep venting), offer up a prayer of weakness, and get to it. The mountain is calling.

steens3

Photos courtesy of my good buddy Paul Nunn. Hire him and his wife, Anne. They are amazing.

Regression and Renaissance

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Back when “Early intervention” was a new term and a thin hope for us, I used to drive my son to school every afternoon. We were lucky to get him in the program. He was four years old. Just months removed from his diagnosis, and two years from the initial regression that took away his words and all but severed our connection with him.

Those afternoons were great for sleepwalking. I would drop him off, choke back my new reality, and zombie over to a coffee shop where I would open my laptop and medicate myself with work and sports talk to avoid daydreaming.

Four o’clock would come and I would retrieve him from class with a numb, vague idea that he might have learned something he would remember tomorrow.

The regressions had kept coming back, you see. We would hear a new sentence. A new skill. A new glimmer. But the next day? Gone.

“I swear, he was doing it last night!” we would insist to his teachers.

The mystery of those regressions had been hanging in our minds and our stomachs for weeks. Everyone was concerned. The tests had been extensive and traumatic. My poor wife, trying to keep him asleep for hours while they tested for absence seizures…

Everything came back negative.

Then came the worst day. On this afternoon, I found a parking space out front. There was a big silver handicap button for the door that Jack always loved to push when I dropped him off. I avoided the button and pulled the door open instead. My personal rebellion.

A few moms were waiting outside the classroom gate. Inside, I saw Jack with his teacher. She looked apprehensive. We walked a few steps out of earshot from the moms, and she delivered her tentative conclusion about the regressions.

“We think he might be mentally retarded,” she said in a kind voice.

I died a little more at her words.

I thanked her and mumbled something about how we’d wondered about that, and no we were not offended, and thank you again, we’ll be fine.

I wept like a baby the whole way home. It is a wonder I stayed on the road.

That was my worst day. I have almost never spoken about it.

 

* * *
 

It wasn’t a diagnosis, first of all. It was a concern, and a well founded one. A theory that seemed to fit the facts, but was far from conclusive. And this is how Jack’s teacher presented it. She was professional, insightful, and sensitive, and we loved her for it.

Secondly, I know the term has since been replaced by gentler ones. I am thankful. Remember, this conversation happened several years ago, and in context, it was not offensive. We knew what she meant.

Still, the words stung. The possibility stung.

Sara and I didn’t talk about the theory much, though I think she dismissed it almost out of hand. She inherited the faith of her late father, I think. Forget moving mountains; that man could move entire mountain ranges with his faith. And true to form, his daughter held on to her small, almost imperceptive observations of Jack’s growth that I suspected were pure denial.

 

* * *
 

I tried to prepare myself for the grim possibility that Jack’s condition might go beyond autism. That he might not be able to learn. But everywhere in the autism community, I saw statements like, “Autistic people are NOT disabled!” And of course, it’s true. Autism and “cognitive disabilities” are completely different. And yes, I know that many, many autistic people are not only verbal and accomplished in most areas of life, they are often brilliant. And yes, yes, yes, I know: “different, not less.”

But what about the times there actually is a “retardation” (I use the term in the literal sense) that makes progress all but impossible? What if there is a permanently disabled brain that will not ever latch onto information or make relational connections?

In those instances, I fear that the insistence on a strict differentiation becomes a slap in the face of those dealing with cognitive impairments. It feels to me like we’re molding a new kind of caste system in the special needs community. And there is no doubt which class is at the bottom.

And I thought, that could be my son you’re trying to keep your distance from! And even despite my own lingering depression–the great failure of that season of my life–I knew his value has never been based on his abilities or his possible disabilities. Jackson’s value, like all of ours, is inherent. God-given. Soulborn.

 

* * *
 

Four years it’s been, and I’m learning to daydream again, little by little.

Part of that is my own spiritual journey. The other part is my son’s personal Renaissance.

First came “Jack and Daddy.” Then came a video sent home from school a few weeks ago. Jack was answering his teacher’s questions in the clip. Giving his address. The names of his brothers and sisters. The name of the school. He has never done any of this before. Ever.

Then, last week, he gave me an unsolicited hug and an “I wuv you, Daddy.”

And finally, this morning, while he answered all those same questions for my parents via my iPhone with clarity and certainty, it all crystalized for me:

My son is learning. He is growing. And I am finally believing.

I am believing that there really is a treasure trove of skills and knowledge inside him that can be unlocked. That he knows our affection. That he knows we love him.

I am believing that his mind is not, in fact, stuck.

This is why I’m revisiting that afternoon. I need to put the incident to bed. Because I made a decision on that day to hope for less, and Jack is currently waging a campaign against that decision. By my oath, the boy is relentless.

And today, I am choosing to surrender.

Autism Awareness: What I Want the Church to Know

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Dear Church,

You don’t know me, but I am one of you. I was born in you and raised in you. I did mimes in parks and marinated to the soothing rasps of Chapman and Smitty. And now that I’m mostly grown up, I am one of the guys who sits on the front row and “brings the word” on a Sunday morning.

I have five children, and one has autism. When he was diagnosed, it rocked my world. We couldn’t communicate with him, and I got depressed about it. I withdrew. I got angry.

Five years later, he has made good strides in his communication, and I have grown, too. Granted, I’m still moody, but I’m not depressed anymore, and one of the biggest reasons is because of my brothers and sisters. The church. You.

I wasn’t on staff at the time of Jack’s diagnosis but my church leadership embraced my entire family. They took us in. They let us vent and cry. They listened. They went out of their way to love my son and accommodate us. To let us hurt and to help us heal.

You did this. And I love you for it.

But it went further. The entire church body embraced my boy. One Sunday morning, I was on stage giving the announcements, and he bolted to the front of the sanctuary to see me. I picked him up and let him say hi in the microphone. Nobody was irritated. They were delighted because they, too, are striving to know him. They love him.

You did this. And I love you for it.

I am a gushing fan, because I have personally felt the healing of Christ at your touch. My only regret is that so many others have had such radically different experiences.

In the past year, as I’ve hung around the online autism community, I have found very few others who are discussing autism and the Christian faith. There are many reasons for this, I’m sure, but the biggest one is this: we have not known what to say about the issue, but we’ve still tried to offer solutions, especially when it comes to children. And those solutions have driven people away over time.

Okay, it’s worse than that, actually. I’ve talked to many parents of autistic kids who have been simply uninvited from church fellowship. Their son was loud one service, or he was running through the foyer. So they were told not to come back. These are the exceptions, but make no mistake, they happen. All too often. Can I speculate on a reason?

I think it’s because of our views on parenting.

The fact is, there isn’t very much written directly about parenting in the Bible. I wish there was more. It’s hard to list good parents in the bible, but it’s alarmingly simple to find poor ones, even among the heroes: Jacob, Eli, Saul, David, Solomon, and Hezekiah, to name a few. Maybe it’s because we are so short good examples that we have turned to the book of Proverbs, where sayings such as,“Spare the rod and spoil the child,” become our textbook.

Having kid problems? “Give ’em some discipline,” we tell them, as if it’s enough. Because we know people who don’t discipline their rug rats, and their kids are brats, so that proves it, right?

I use that example for a reason: it has wounded many, many children with autism, and it has confounded their already hurting parents. I’ve talked to them.

This is what I want to say to you, brothers and sisters in Christ:
Autism is not a discipline issue.


It really is not. There are boundaries that will need to be drawn and enforced, but those are secondary.

Autism is primarily a sensory issue. Autistic people see things and hear things and feel things in a much different way than the rest of us. They receive extra “data” from their senses, and they don’t always know how to react. Sometimes their bodies just rebel against sensory overload, and that can be a confusing thing. A disconcerting thing.

But please, don’t assume it’s a character issue.

I prefer a different Proverb to inform my parenting: “Train up the child according to the tenor of his way, and when he is old he will not depart from it.” (Prov 22:6, Darby) In other words, there is not a specific mold for our children to fit. There just isn’t. There’s no perfect playbook. No magic bullets. Every child is different, and it is our job to figure out how best to lead them based on who they are.

This is a proverb for us, the church, as well as for parents. How can we encourage the health and growth of our own if we don’t understand them?

Hear me, friends. I am not bashing. I have seen such beauty in our midst. But I have also seen confusion at these intersections.

The CDC tells us that there are more kids getting autism than ever. They say it’s 1 in 68 now. Whether or not you take those numbers seriously, you need to know that there are many families in your neighborhoods that need the beauty of love that is found in your midst. Some of them are invisible, but you can open your doors to them like we did. Others will work up the courage to visit your services, sitting (or standing) in the back, looking apprehensive when the kids are dismissed to Sunday School. In order to share that love with these families, we must adamantly refuse to assume causes and solutions that we know nothing about.

I know we like things to be simple, and we sometimes panic when they are not.

We try to convince ourselves that the answer is easy. Right in front of us. We’ve got the Bible, see, so we’ve got answers. Nothing to see here, people. Move on!

But today is Autism Awareness day, friends, and we need to be aware of the insufficiency of our advice. We need to go back to our roots and remember that Christ Himself is the Answer. We cannot always think His thoughts, but we can at least be His arms. To welcome. To embrace. To be there for one another.

This is the place I found healing. Not in the abundance of words, but in warmth.

And I love you for it.

Photo from GeekyGlass.com

A Letter to My Autistic Son on his 8th Birthday

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Dear Jack,

You’re turning 8 today, and the snow is falling just for you. We don’t get much snow in the valley, but all of a sudden, it’s coming down, and you are right now glorying in the experience. It is a testament to you that none of us doubts the possibility that God sent the snow just for your birthday. Because you delight us, son, and it stands to reason that you delight the hosts of heaven even more.

While I hope the snow lingers a bit, it must not interrupt the mail, because your present is coming. The “American Spy Car.” You’ve been checking the mailbox for it every day. When it comes, you will do what you always do. You will line it up on the bookshelf with other toys of its genre–in this case, Lightning McQueen, Mater, and Finn McMissile–and then you’ll flap the daylights out of them all. And I will think of the autistic boy in Japan, who could not speak but learned to type. He wrote a book explaining why he does the things he does. Flapping? He explained that light can be so harsh sometimes, and the act of flapping filtered it. Calmed it. Made whatever he was looking at more beautiful.

Is that why you flap, son? To make things more beautiful?

There was a time when these questions depressed me, but they intrigue me now. You intrigue me. Especially after what happened last week.

You brought this book home from school. It was a red, cardboard book for very young children. Every page showed the same two characters: a big penguin and a little penguin. “I like it when we hold hands,” one page said, or “I like it when you tickle me.” You opened it up next to your mother and smiled brilliantly, pointing at the big penguin, then the little one:

“Jack and Daddy,” you said.

Mommy sent me a frantic message about it. When I came home, you were almost as eager to say it again as I was to hear it.

“Jack and Daddy.” It made you giggle. Your eyes were alight. And mine were welling up.

It’s not a simple thing, son, to understand relationship. This has been why your mom and I sometimes still get so sad about your experiences. The limitations of your autism have stopped your tongue, and severely hampered your connections with people. With us. And this is not the way it is supposed to be. It is wrong.

You have probably heard me say things like “God created us for relationship,” because I am a preacher, and I say that often. I believe it with all my heart, and that is the top reason why we fight for you. Because you are our son, and we want you to experience all you were meant to experience. And the most basic experience a child ought to feel is the love of his own family.

We didn’t know you felt it.

But then came, “Jack and Daddy.”

Did you understand what those words would mean to us, my boy? Did you say them on purpose, to assure us that you do know our love? That you get us?

I hope that you can read this someday, and understand the joy that comes with your overtures of affection. Just a glance from your eye does wild things to our hearts, son. And I am honored beyond words to be penguins with you.

Click here to read the next birthday letter

And if you liked this post, check out my book, Aching Joy!

On Praying Dangerous Prayers

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Once, there were three brothers who found a magic lamp. They were good brothers, passionate brothers, with a deep affection for justice. So when the Genie emerged and offered them three wishes, none of them even considered themselves. They all thought of the terrifying lions which had long threatened the safety of their village.

The older brother knew what he wanted right away. “We need awareness. I wish for an advanced early warning alarm system that will sound when predators are near.”

“Brilliant!” the second one agreed, “And lions are beautiful, but dangerous. So for my wish, I want for everyone in our village to understand just how dangerous lions can be.”

The Genie snapped his fingers. “Both requests… done.”

The two slapped each other on the back and turned to their younger brother. His mouth was twisted in consideration.

“What’s it gonna be, kid?” the Genie asked.

“Make me a lion tamer.”


* * * * *

I spent last week with a gang of young lion tamers in Texas who are not satiated by “awareness” alone. They stand out amidst a culture obsessed with educating one another. We pin colored ribbons to our jackets, and pat ourselves on the back for telling people why. We find enlightening quotes over filtered images. Then we pin them, share them, and urge our friends in 140 characters or less, “Be aware of my cause!”

We bloggers are often the most guilty, especially on sites like this one. We write about subjects that many people know only a little bit about. We say a few honest words about these subjects, and then, out of nowhere, people gush about how “courageous” we are for saying them. Because that word, especially, has lost its meaning. Its worth.

Real courage does more than speak. It does more than raise awareness about personal difficulties or societal sins.

Real courage does.

These young people I mentioned, they are doers. Even now, they are preparing to roll back blatant injustices in far off lands. Places the rest of us might not even be aware of. Places where injustice does not even bother hiding. They will smell it everywhere they go. It will break their hearts in a hundred places. And yet, they go with healing in their hands and songs on their lips.

They do not have to go. In fact, they are paying through the nose for the opportunity. But they are volunteering anyway, because they understand “what is good and what the Lord requires,… to do justly, and to love mercy.” They go because they ache for the broken. They go because Jesus went.

One of the evenings I was them, I told this group all about my son Jack, and about the risks that special needs children face. After my talk, one young lady opened her mouth to pray, and courage—real courage—came out. “Lord, give us opportunities to love these children. Bring them into our lives.” In another setting, with different people, those might have been empty words. Not in this group. I knew she meant them, because she already is doing. And I fully expect her request to be answered. Dangerous prayers usually are.

I want to pray dangerous prayers, too. I want to live a wilder story. After all, as Mr. Lewis reminded us, Christ Himself is not a Tame Lion.

The Big Sister Speaks! (A Guest Post)

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I haven’t had any guest posts here before, but what better time to start? My daughter Emily (the one on the left) is eleven, going on twenty-three. I wrote about her and her sister earlier this year, but she topped me with this, which she wrote for school last week. I couldn’t be prouder. It’s worth noting that we didn’t help her on this, except to clean up a few details in her timeline, and fix some minor punctuation. This is all her. And the best part is, she really lives it. Her sister does, too. I’m thinking more and more that the siblings of special needs kids are some of the most amazing people on the planet. -jh

Don’t Judge a Boy by his Diagnosis

By Emily Hague

It was June 2009, and it was that crazy year that my life changed forever. My little brother Jack was three, and I was eight. Everything seemed perfect. School was out, and my friends and I were playing every minute we could together. All of that changed when one day, when mom and dad called me and my little sister, Jenna, inside early. I had no idea that what I would learn would turn my whole world upside down.
     
I remember thinking how frustrating it was that my friends and I were right in the middle of making a perfectly good fairy house when mom and dad had to come in and ruined all the fun! Mom set the stirring spoon down next to the stove and sat down in a chair as Dad opened the door for us and sat us down on the couch. I can’t tell you exactly what was said, mainly because I can’t remember, but it went something like this: “Girls,” my dad said, “things are going to be a little different from now on.” “How so?”I grumbled. I didn’t want anything to change. “Well,” my dad said, “Mom and I, just found out that Jack has autism.” I was about to ask what autism was, when Jenna beat me to it.”What’s Autism?” I think Mom and dad had a hard time explaining this to us since Jenna was only seven and I was eight. They did their best to explain but I still didn’t understand for quite a while. All I knew was that Jack couldn’t think like we did, and that was good enough for me.
 
Three days later we moved to rainy, cold Oregon, and there Jack started going to a school called a Child’s Garden that specialized with kids with autism. I saw him slowly learn and grow, and it became obvious that he wasn’t quite like other children his age. He liked to wander off by himself. He didn’t look you in the eye, and he couldn’t talk. One morning we were excited to show mom and dad that we had taught Jack how to say “Please,” but when we told him to say it the next day, he looked at us as if to say “What are you talking about?” His mind had lost the words again. 

Suddenly it all fit together in my mind. Autism made it hard to communicate with Jack because he couldn’t talk or understand everything. It was like he was trapped in his own world. I asked Dad why Jack would stare out the window and not look us in the eyes. And he said, “He sees things differently than we do.” Little things like a light or a sound that wouldn’t bother me at all, would drive him crazy. When he pulls away into his own little world, that means he can’t cope with the light, or the sound, or whatever else is bothering him. Even now, Jack has a tendency to get attached to random things that we see as every day items (we’re not sure why), such as a certain shirt, or a spatula, or a bean can. If you take one of these things out of the equation, you get a fit.

So eventually we each developed a special way to communicate and connect with him. My personal way was and is to talk directly to him, play directly with him, not act like we’re talking to somebody from another planet. He’s a kid too. We play tickle tag throughout the house, go on walks to the park, and play games on the iPad together, just like normal siblings. Because we are normal siblings.
 

Over the years I’ve seen people look at him in his state of being as if to say,”What the heck?” And I know that they could never really understand who Jack is. As Jack’s sister, I’ve learned not to look at Jack’s outward appearance. I’ve also learned that you need to take time to understand somebody before you form an opinion about them, otherwise you could be making a big mistake. So the old saying’s true: “Never judge a book by its cover.” But in Jack’s case, I say, “Don’t judge a boy by his diagnosis.” I love Jack, Autism and all. He brings joy to my life every day, and I can’t imagine life without him.

Waiting in the Land of In-Betweens

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It happened at the end of a long church conference. I was exhausted, but the preacher was in no hurry. I hate it when they don’t hurry. 

“If you are the parent of a special needs child, come up and get prayer.”

I wanted to slip out the back, but six of our church staff were with me, and I knew they wouldn’t let me wimp out like that even if I tried. They had held up my arms for too long.  So I dragged myself to the front of the sanctuary where a line of young ministry students stood eager to pounce. I chose a tall Canadian man in a brown, business-like sweater.

“My son Jack has severe autism,” I told him beneath the ringing synthesizers. “He’s seven, and he can’t speak and… yeah…” I stopped there to brace myself for a loud and sweaty prayer. But my Canadian merely closed his eyes and started to whisper. I leaned in to hear. He sounded gentle and confident. A prince next to his father’s throne. And then it happened: He said the word “breakthrough,” and I started to weep. 

It was a frustrating moment because I thought I was done with all that. For more than two years, I had walked that familiar path of grief. Denial I remember, but only because my mom used it in an email, as in: “I think Jack has autism and you are in denial.” I laughed, thus proving her point.

Anger and Bargaining came and went quickly, but Depression lingered. There were two, maybe three years of numbness and hiding places. There were specialists and therapies for Jack, and for me, a new personality that wanted to be left alone. I used to be an extrovert, they say. 

At the time, I failed to recognized the commonness of my journey. Only when I reached the end of it did my friend tell me,

“You’ve been going through the stages of grief, and I think you just reached Acceptance.” 

It was a surprising revelation for two reasons. First, I had always thought of grief as something that follows funerals and longs for the past. I missed the obvious other kind; the kind that slumps forward, casting a permanent shadow over tomorrow that can no longer be.

But even more significantly, my friend’s assessment of my progress was spot on. I had come to terms with Jack’s condition. We had been playing together and laughing together like never before. Even on bad days, when he might be in the middle of an epic melt-down, I could still feel peace. Joy, even.

And yet despite all this, I still found myself at the front of a sanctuary in a snotty mess. Still craving “breakthrough” more than anything in the world.

Seven months have passed since that night, but I haven’t really left the foot of the stage.

I confess I want holes knocked through the wall that keeps my boy distant from me, my wife and children. I want sunbursts of language, comprehension, and relational abilities. I want him to have a future.

Some have told me to let this hope die and embrace my new normal. They say autism is part of who my son is, and if I struggle with it—if I treat his condition as a thing to be cured by human or Divine hands—I am rejecting him. This viewpoint has its merits, but the accusation inside it knocks the breath out of me, because I already accept and embrace my son. For everything he is. I delight in him, his curiosity, his affection, his laughter. And if he never learns speech, or safety, or independence, I will love him no less. 

Others have told me just to try harder and refuse contentment. They imply that it’s my fault Jack hasn’t been healed or cured yet, and if I would just get with the right therapy or take authority (i.e., pray louder), then I would finally catch my breakthrough. That accusation hurts, too, because they don’t know how hard we have tried; how many nights we have held him, wept and begged God to intervene. 

Here is my dilemma: if I pray too hard, I start fixating on change, and I become less satisfied with who Jack is today. But if I accept too hard, then I give up on a better future for my boy. And try as I might, I cannot see how to call that “loving.”

How, then, am I supposed to live? Neither of these extremes is correct. Not for me, anyway, and not for many parents of special needs children. I trust there is a solution, but it must come from Christ Himself. Who else knows how to hope all things, endure all disappointments, and love without condition?

So for now, I wait in a land just east of Acceptance and west of Breakthrough. Here, I get swept up in my son’s unbridled laughter, then in quick flashes of torrential fear. Here, I thank my Father for my boy, who is enough, and in the next breath, beg Him for more. This is where I wrestle with God: in the already not yet kingdom. The Land of In-Betweens. 

What my Autistic Son is Teaching Me About Measuring Results

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Here’s an accomplishment: I’m 34, and already on my fourth midlife crisis.

My wife says it has all been one crisis chained together. She might be right. All I know is I want a Harley, or something less practical for a father of five…

What’s my problem? Oh, just the same old midlife-crisisey stuff, but mostly this: I feel like I’m not where I should be. I have yet to finished a book I’ve been trying to write for five years. I do not have a master’s degree. I have never been picked for “So You Think You Can Dance,” and it’s been like, four years since I have won my fantasy football league.

Results are hard to measure. Success looks so relative. For me, every time I accomplish something, I look up to see a dozen other people who accomplished it ten years earlier, with ten times the results. “Oh you’re blogging? And you’ve got almost 400 followers? That’s cute. I’ve got half a million, and a book deal with Harper Collins.

Stupid twenty-five year olds getting their stupid books published…

But then I look at my son. By almost every societal measure, Jack is years behind his peer group. At seven, he doesn’t talk, ride a bike, tie his shoes, or soap himself up. He has no interest in wiffle ball or show-n-tell.

There are some formidable challenges here that can weigh down on the psyche of any parent. Concerns about the future (let alone the present!) can consume me during rough patches, especially during regressions: awful days of stress and meltdowns. Defeats. However those instances do not create a complete picture of Jack’s progress. If I insist on counting defeats, then I must also count victories. My own intellectual integrity demands it.

For example, in the past two years, Jack has learned:

  • How to initiate play with his siblings
  • How to say “mommy” and “daddy”
  • How to go potty by himself (!!!!)
  • How to stall his bedtime by claiming the potty privilege 3 times an evening. (Isn’t that so NORMAL? I love it!)
  • How to find the Netflix app no matter what folder we hide it in

There are more, of course, and most of them aren’t earth shattering discoveries either. Just real, measurable results. And these simple victories seem to fuel him.

Simple victories. I’ve had a few of those recently, too.

  • I learned to whistle two years ago, and now I rock the Andy Griffith theme like a boss. An old boss.
  • I’ve preached some sermons this year that I thought were decent, and one in March that I was actually quite proud of (because I didn’t say “are you with me?” or “does that make sense?” fifteen times…)
  • I am writing often, and some people are even reading what I write.

    • And then, of course, the bigger victories:

    • I bought a house for my family last fall, and we adore it.
    • I got a beautiful girl to marry me fourteen years ago, and she hasn’t left yet.
    • We made five kids, and all of them like me.
    • I came through a long, hard season, and I did not lose my faith that God is good.

    In order to properly measure success in life, we must acknowledge our wins and not just our losses. Then, we must, like Jack, take at least a little satisfaction in those wins.

    It’s a simple lesson, but it’s sturdy enough to help me laugh off my own fake midlife crises. (Yeah, they’re fake. Mostly.) I might not be as far along as I’d like, but I’m a blessed man with an amazing family. And together, we are moving forward.

    * Photo by Sugar Beats Photography

    Jack and his Bush's Baked Beans

    A Boy and His Bush’s Baked Beans (A Love Story)

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    It was an affair of Hugh-Grant-ian proportions. You’ve seen an aimless youth, lazy and passionlesss, morph into Romeo after a single glance from her? That was Jack. Wandering through Safeway aisles next to his mother without an inkling of how his life was about to change. But one turn around the bend, and there she was. The most beautiful thing he had ever seen. A perfectly stacked display of Bush’s Baked Beans.

    Practically speaking, Jack never cared for beans. To this day, he doesn’t eat them. But there was something about the way the gold gradient glimmered under the florescent lights that he found irresistible.

    He threw a fit when he got home, and we couldn’t figure out why he was upset. He could not tell us, of course. Even though he’s seven, he cannot really speak. His autism usually turns his words into mush, and when we do recognize them, they are either one word requests or familiar nuggets of encouragement from Bob the Builder. But this time, in the midst of his angsty malaise, his words crystalized for one clear instant: “Go to Safeway!” he commanded his mother.

    Well… a three word sentence from Jack should always be rewarded. Into the van they both went, and the moment Sara stepped out with him through the automatic doors, the boy bolted through the store. He knew where she waited. Aisle three! He came home with a can of Bush’s Original Baked Beans, round and true. You’ve never seen a boy so proud. He set his prize on the bookshelf, and flapped in his hands in front of it. His love dance.

    It was a fine discovery for Sara and I. These bean cans have since proved a fine reward for completed sticker charts. In an otherwise dismal summer, Jack has had flashes of strong motivation during “work time.” The Safeway trips have become more frequent, and the cans have multiplied. Original, Vegetarian, and Country Style. We have bunches of them. He lines them up and flaps them. He runs around the house with them. He holds them at night like teddy bears.

    beansdonationThen came our big church-sponsored event. It was an outdoor festival: a concert, kids’ fair and, most importantly, a fundraiser and food collection for the local food shelf. Two cans of food got you in.

    I was on Jack duty that day while Sara took the other boys. Jack is terrible in crowds. Really. He has no sense of boundaries–his or other peoples–or of danger. But on that day, he saw the food donation table, and that was the only place he wanted to be. I wasn’t supposed to be working that station, but I ended up helping take donations for about an hour, while Jack searched the table for any cans of Bush’s Baked Beans. He would find them all of them: short cans, tall cans, cans of every flavor, all golden and glorious. We would hide them, and he would find them again.

    We told him he could choose a can to take home since we brought extra donations, and he took a long time to choose. When he did, his decision left me speechless…….
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    vancamps
    Wait, what? Van Camp’s? I don’t get it either. But like so many other things with our boy, we just shrug, laugh, and go with it.

    “Here’s lookin’ at you, kid.”

    To See Your Thoughts Take Shape

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    I want to trip inside your head
    Spend the day there…
    To hear the things you haven’t said
    And see what you might see

    I want to hear you when you call
    Do you feel anything at all?
    I want to see your thoughts take shape
    And walk right out.

    -U2 (“Miracle Drug”)

    “Waffle! Waffle! Waffle!”

    The word rushes out of Jack’s mouth. He is panicked. We try to calm him down. We offer him waffles, but he turns his head. We know it’s not about the waffles, but we had to try.

    I get down to his level. “What’s the problem, bud? What do you want?”

    He reaches up my shirt sleeves and digs his nails into my arm. “No scratching, Jack,” I snap, a little too harshly. He doesn’t hear me.

    “Waffle! Waffle!”

    That’s when the screaming starts. As a baby, long before his autism diagnosis, Jack had the rare ability to cry like a Ring Wraith (Nerd points to you if you catch that reference and can hear it right now.) He grew out of it, but found it again all of a sudden when he was five. It took us two weeks to discover why: he had been on a Monsters, Inc kick. If you’re like Jack, there’s a lot of fine screaming to emulate in that film. We made the DVD disappear, and he soon forgot about his talent.

    In the last six months, however, the scream has resurfaced. And this summer, he has perfected it. It’s loud, a bit scary, and immensely sad.

    Sometimes his problem is obvious: he is annoyed by the baby’s crying, or the iPad battery died, or he can’t find one of his prized cans of Bush’s Baked Beans. Other times, his cries are a complete mystery. He cannot tell us what’s wrong. The screams are not respecters of setting: they come out in the car, the grocery store, or the backyard. I worry that one of our neighbors might call the police, and not out of suspicion, but out of sheer concern for the boy (“Hurry! It sounds like he’s dying, officer!”).

    Yes, it’s been a long, lousy couple of moths of tantrums and regressions. Not that this is new. Summer is always hard. I suppose if you’re as OCD as Jack, the lack of a routine must be frustrating.

    Sara has caught the brunt of it. I’m at the office for most of the day while she’s at home trying to decipher all of this. She told me tonight she thinks that “waffle” is just his frantic attempt to communicate that something is wrong. Maybe he is scared. Maybe he is hurting. Or maybe something just seems off. So he reaches for a word–any word–and that’s the one that comes. It makes sense since he eats waffles every day.

    I like her theory, if only because it sounds so normal. When stress comes, we all have our go-tos for comfort: Nail biting, griping, eating. Given enough stress and enough habit, those responses can morph into unhealthy addictions. For Jack, maybe just the idea of waffles is enough to fill that comfort gap.

    But that’s the most troubling part. We don’t know why he needs comfort, and he cannot tell us.

    Forgive me. I don’t mean to sound melodramatic. We’re okay. We’ll get through this. I just hate that this wall still stands, four years after his diagnosis.

    I want to see your thoughts take shape, boy. More than anything else.


    My Imaginary Support Group Gets in My Face

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    After not being able to blog for almost four months, I finally hauled myself into an imaginary support group meeting with other autism parents. This is how it all played out… in my head.

    JH — Hi, I’m Jason, and I’m a lousy autism blogger.

    GROUP [in unison] — Hi Jason!

    JH — Hey. Thanks. But… It’s just that, I don’t really belong here. In cyberspace, I mean. Writing about autism.

    Sweater Guy — Tell us why you feel that way.

    JH — Well, for starters, I’m not an autism expert. I know my son, but that’s about it.

    Sweater Guy — Are you saying you know Jack, but besides that, you know… Jack?

    JH — I see what you did there. Very clever.

    Sweater Guy [after a high five from Captain Mustache] — Jason, all of us feel that way. We’re all just–everybody, say it with me:

    GROUP — “…On an unplanned trip to Holland.”

    JH — Yeah, I’ve heard that line before. I get it, but… you, Steve is it? You lead a coalition to change insurance laws. And you in the green. You have a degree in the childhood development field. I’m just a dad.

    Hair-in-Buns Lady — Is there really such thang as an honest-to-goodness expert in autism, Jason Hague? I mean, if you seen one chawld with autism–

    JH — “You’ve seen ONE child with autism.” Yeah, I’ve heard that one too. But I don’t know if I even want to write about this.

    GROUP — [laughter]

    JH — What? What’s so funny?

    Captain Mustache — You think we wanted to write about this? Dude, I wanted to write about Pez Dispensers. I have the best collection, as far as I know, on the west —

    [Sweater Guy clears his throat loudly. Silence follows.]

    Captain Mustache — Sorry, sorry. We’ve been working on launching out into conversations nobody cares about… The point is, I wanted to write about Pez, but I found out other parents needed what I had.

    JH — You have a degree?

    Captain Mustache — No. I have experience, dude. Experience with my son’s emper tantrums. Early diagnosis. Expectations. Pediatricians. Special schools. Social Stories. You’ve got some of those same experiences, dude. People want to hear about it. Young parents, especially.

    JH — Well, my wife does a better job of writing advice like that. She’s super mom. No, seriously. She wears the suit to bed and everything.

    Hair-in-Buns Lady — That might be true, but you have thangs to say, too, hon. As a dad you get pretty personal when you write about your Jackson. How does that make you feel?

    JH — [Shrugs] It stings. Every time I do it, it stings. Because whenever I put myself out there like that, I start to think about the whole thing more. All that Jack is missing out on. All he might miss out on.

    Spaghetti-Straps Grandma — Is that why you haven’t written for nearly four months?

    JH — I don’t know. Yeah, maybe. But… It’s just… When I write about autism, I’m really not writing about autism. I’m writing about my son, and our life with him. I haven’t tried to give advice or anything. I just try to tell our story, and people still get…

    Spaghetti-Straps Grandma — What? Pissed off?

    JH — Yes. Thank you. That’s what drives me crazy about this subject. There’s so much bickering, it’s unreal! I thought we were all on the same team here! I once implied that dealing with Jack’s hard times was like suffering, and I was mobbed by an angry Facebook group who said I had insulted them. Why? Because a doctor told them that they sit under the same metaphorical umbrella as the one my son sits under.

    Sweater Guy — The Autism Spectrum.

    JH — Yeah. And for the record, I think it’s a stupid method of classification that has to change. Seriously, it’s way too broad. My son doesn’t speak, doesn’t stay close to us, he has no fear of moving vehicles, and he may never be able to groom himself let alone live an independent, adult life. If people can offer intricate, verbose arguments about why they are the same as he is, they have proved my point, and I have nothing to say. It’s apples to oranges. I would give anything for Jack to be able to speak and reason like that. To have passion for something besides the shelf of Bush’s Beans at Safeway.

    Spaghetti-Straps Grandma — We hear you.

    JH — No, I don’t think you do. Because you’re telling me to keep writing, and I’m trying to tell you I don’t want to write about autism. I am sick of the labels and all the yelling about them. I am sick of the gotcha posts and endless vaccine debates and all the political stuff that goes with it. Don’t get me wrong, I’m thankful for advocates, but I don’t want to be one. Can’t I just leave autism out of it? Can’t I just write about my son, who mysteriously had his speech stolen from him? Most of his relational capacities, stolen from him? His future… stolen–

    Sweater Guy — NO! You don’t know that! Don’t go there! Anything could happen.

    Spaghetti-Straps Grandma — You’re a pastor, aren’t you? Don’t you believe that God could intervene?

    JH — Well, theoretically, yeah.

    Captain Mustache — And lots of kids have breakthroughs later on, bro. There are tons of examples.

    Hair-in-Buns Lady — What about the therapies that haven’t even been developed yet?

    (Silence…)

    JH — I know. You guys are right. And I’m not giving up. But I have to write about other stuff.

    Sweater Guy — You have already. Lots of times, even on this blog. You can write whatever you want. It’s your blog. Your story.

    (Silence…)

    Sweater Guy — But Jason? You won’t be able stop writing about autism. This journey is in your bones now. Your son is too deep inside you.

    JH [Nods] — I know.

    [Stands up slowly and walks to the door. Stops. Turns around.]

    JH — Jack ran off in May, you know. Freaked us out. He was trying to get to our old house. We found him four blocks up the road, on the sidewalk. Not the street. The sidewalk.
    That counts for something, doesn’t it…

    [Smiles. Exits.]

    “Jesus, Autism, and Why I Still Believe”

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    I’m guest posting today at a terrific blog called “Find My Eyes.” The author is a fellow autism dad, and he’s a great guy. This month, he’s been featuring a different guest post by someone in the autism community. When I offered to take a day, he asked me to write about my faith, and how it works with my family situation. This is what I sent him:

    Jesus, Autism, and Why I Still Believe

    The Christian faith is a lousy force field. Some of us think we can hide inside of it like it’s a super sleek Jesus bubble that locks in the happy times and repels sadness. We think it will keep the lights glowing and the fires crackling inside our little Thomas Kinkade lives, and nothing can breach it. We teach our kids to sing, “I’m inside, outside, upside, downside happy all the time” since we found Jesus. And if they grow up with a shred of motivation, they might just sue us for religious malpractice, because it’s a lie. We are living neck deep in the stink of life just like everyone else.

    Oh, we try to deny it. When someone asks us how we’re doing in church, we have a script for that:

    “I’m fine, thanks!”

    Because we’re all fine. Everything’s great, because we have Jesus, and we’re just… so… great.

    Read more at Find My Eyes.

    Our Kids Need THIS More than Autism Awareness

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    “1 in 50.”

    That’s the new statistic that was trumpeted from the rooftops just a few weeks ago. One school-age child in fifty is on the autism spectrum.

    Is that an inflated statistic? Yep.
    Is there over-diagnosis? Sure.
    Was it a poorly-conducted, only quasi-professional survey? Indeed. Fellow autism dad Stuart Duncan has a great analysis here.

    And yet, the very fact that so many people are ready to believe it is, in itself, significant. After all, no stat sounds far-fetched if you “know somebody.” And these days, in my experience, almost everyone knows at least one child with autism.

    It will take years for the real statistics to come to the surface. The hype will die down, and one day, everyone will be able to agree not only on the numbers, but on an actual definition and cause. Personally, I suspect the blanket “autism spectrum” will be completely re-imagined and divided with better descriptions and far more specificity.

    But for now, 1 in 50 does mean something. It means that we need to be ready, no matter what sphere of influence we swim in, to embrace more of these kids. Ready to withhold judgment, to accept their quirks, to help out, and to adapt in ways we never had to think about before. In Christian circles, we have a word for this kind of thing, and it’s not awareness. It’s grace.

    Last month, my son interrupted our church service. We have a special classroom for kids on the spectrum, but they come out while the worship band is playing. They like it. As one of the pastors, I sit on the front row, and on this Sunday, Jack saw me and bolted through the aisles. I didn’t even see him because I had my eyes closed. But when I heard a commotion and opened them, I saw a bunch of smiles. A mom had snatched him up in her arms, grinning ear to ear. Half the congregation saw it, apparently, and they were smiling too.

    That, friends, is what I am talking about. That is grace.

    We need grace for the boy who interrupts our worship services.
    We need grace for the kid hugging the floor of the frozen food aisle. His mom is doing the best she can.
    We need grace for the chatty little girl in the movie theater. Sitting still and concentrating are harder for her.
    And we, the parents, need grace as we try to figure out how to correct, protect, and train our kids to live with the rest of society. We’re probably doing it differently than you would. I’m sure we’re getting many things wrong. Please, give us grace. We’ve had to throw out our playbooks, here, and the game is very, very complex.

    Being aware of the latest stats isn’t all that important. Not for everyone, anyway. What matters is that you, the business owner, the waitress, the teacher, the mailman… you will meet more of our special children in the days to come. They are different, but not that different. They can feel your warmth. And they could use your patience. Your good humor. Your grace.

    <

    A Salute to the Siblings of Autism

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    There is so much to say to you all, you fierce soldiers of breakthrough. You grow up in the same house as one they call “special,” and that carries more weight than we understand. It means that your parents’ eyes look past you. That we take it for granted that you are whole even when you are not. It means that you give and give and give. Every big sister shares with her siblings, but most of them don’t give away their entire portion. You do it. Often.

    You watched your brother grow bigger but not older. We had that talk, introducing you to that mysterious word, “autism,” but you already knew something was wrong. When did you figure it out? Was it when you saw other boys trying to play with him? Or when he threw himself on the floor and screamed in the lobby of the bank? I hope it was something like that, and not something we, your parents, did. Because I’m sure you saw the change in us, too. We traded in our laughter for dark clouds and chronic busyness—not just from the doctors’ appointments, but from the other appointments, too. The ones that took our joy and concentration even when we sat next to you on the sofa.

    Since those days of shaking, you have forgiven much. The family’s attention has been fixed on your brother. He absorbs so many resources: concern, affection and especially time. It must hurt sometimes to see so much of your inheritance spent on him. After all, there is only so much attention to go around. You’ve had to settle for out-loud readings in the living room, and the occasional daddy date at the movies. But you treat those consolation prizes like championship trophies.

    The way you act, the dollar theater might as well be Disney Land.

    You’re not perfect, I know. You struggle with all of this, even though you hide it. If there is one thing I fear, it is that you bury it too well. Many in your situation grow up to resent their childhood and their parents for not seeing them. And while I wish there was some way to ensure that this won’t happen, I can at least tell you this:

    We do see you. We see how you buckle your brother’s seat belt on the way to school. We see you tickle him and chase him and laugh with him. We watch you lead him by the hand through the noisy crowds of kids and grown ups. When he pulls away from you, you call him back with care and patience in your voice. You read to him, you cuddle him, and every day, you teach him.

    You teach us, too.

    While we struggle to understand and accept your brother’s condition, you prove again and again that love is infinitely richer than tolerance. For unlike tolerance, love chooses to engage, even when there might be no positive response. Love enters into the uncomfortable, the mysterious, messy places, and says “I love you. Even here.”

    This is what you do so well. You teach the people around you how to love their brothers. We see that. Our friends see that. God sees that. And all of our hearts are bursting with pride.

    Months after I wrote this, my 11 year old daughter Emily penned this essay about her brother. It was for a school assignment, but I published it as a guest post, because, well, it proves everything I have said here. These are amazing kids. -jh

    I Am an Expert on My Son

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    I admit; I don’t know much. I’m new to this autism thing. I’ve done some reading, and I’ve talked to some people who seem to know what’s what, and I’ve talked to others who contradict them.

    To be honest, I don’t know what to believe about vaccines, gut issues, biomedical treatments, or how evil this or that organization might be.

    All I have is my own story. And you have yours.

    But for the life of me, I can’t understand the vitriol hurled over the heads of our children. I really can’t. Whether autism is a thing to be cured or embraced, whether it is caused by chemicals or genes, all of us are trying to figure out which way to go with our kids. If we are talking together, researching, pursuing what we believe is right for our kids, well…shouldn’t that be enough to prove that each of us loves our kids?

    I’m not trying to form a Kumbaya circle. I’m not trying to make everyone get along.

    I’m saying it’s time to honor each other’s story.

    That’s why I write about this issue. I am no expert on autism, and I won’t make experts of any of you. But I am an expert on my son.

    If autism has been a blessing in your life, I honor that. There is much gold to be mined in every situation. I will not try to dissuade you of your story. It is your story.

    My story is different. My son was progressing normally, and then he changed. He retreated inside himself. His words disappeared along with the personality he had developed. Jackson is still, at the age of seven, a phenomenal blessing in my life, and I love him more than I can ever say. But he is not autism. His condition is different than his person. And I’ll be honest: thus far, his condition has not been a blessing. It has caused a good deal of frustration and angst for him, and confusion for us. There is a block in our communication.

    I want that block gone. God help me, but I do.

    Maybe my perspective is wrong. Maybe it will morph in the future, and I will realize that autism really is a joy and a blessing. But thus far, in my family story, it hasn’t been that.

    I hope we will, one day, come to a consensus about these issues in an objective way. I want to be able to agree on the definition and cause of autism at least. Then we might have a better idea on how to move forward.

    But until then, all I have is my story.

    And you have yours.

    A Letter to My Autistic Son on His 7th Birthday

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    Dear Jack,

    I’m writing this letter in faith that one day you will be able to read it, understand it, and forgive us for the mistakes we are making with you.

    Tomorrow is your birthday. Seven years ago, I was watching the first quarter of the Super Bowl and your mom’s water broke. I joked that it meant something. That you wanted to come out and watch the Steelers beat the Seahawks. I took it for granted that we would someday watch football games together and practice fade routs in the back yard. Read more

    The Shirt and His Boy

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    jack & tigerThis is my son Jack. He has autism, as some of you know. But chances are, you have never met his favorite shirt, Tiger.

    Tiger got his name from a character in Kung Fu Panda. Technically, it was TigRESS, but that’s unimportant. What matters is that Jack looked down at his striped sleeves one day while watching the movie, said the word “tiger,” and fell in love. He refused to take it off. Read more

    Life Through Wide Angle Lenses

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    lamppostWhenever tragedy strikes, we make statements like “That really puts it in perspective.” And it’s true. Jarring events impose themselves on us, forcing us to remember the treasures we have neglected. Treasures wearing our rings, or wrapped in footy pajamas. And then, when the sadness fades, we revert again to our old patterns, glorifying the trivial over the truly precious.

    Do we need bad news to keep us grateful? Do we need death and sickness to remind us of the beauty of life? Are we that pathetic?

    In a word, yes. As a society, I’m afraid we are. But we don’t have to be. Read more

    Parenting and the Problem of Proverbs

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    Sara and I are fortunate to have a community that seems to “get” the autism thing. That is to say, most people don’t assume we are bad parents when Jack goes limp on the sidewalk, or screeches for Puffins at Safeway. It probably helps that his words are so slurred and his stims so obvious. They can tell something is different. Not all parents are so lucky. Some get the “you-suck-as-a-parent” stink eye, even from family members. Read more