The Porcelain Light of Promise

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We need to talk about those screenshots.

When Jack started texting me a couple months ago, I was ecstatic. He has autism, you see, and at fifteen years old, he still doesn’t really speak. We communicate, but we never converse. And I’ve always wanted to converse.

Then, all of a sudden, there he was telling me he liked my Winnie the Pooh voices, and that he liked when we held hands (something that reminded me of the very first communication breakthrough we ever had.) Back and forth we went, trading Gru gifs and Despicable Me quotes. It was (dare I say it?) a real conversation.

I shared the moment with all of you, and the result was predictably awesome. Congratulatory messages poured in on the internet. Over on Twitter, the screenshot went viral. At its peak, the tweet was earning a thousand new likes every ten minutes.

Truly, it should have been a triumphant weekend. But in the middle of the cheers, I felt a nagging itch to rush in and throw cold water on everyone; to say it wasn’t that big a deal. After all, Jack had been using his device to answer questions in school and spell words for months. This wasn’t, like, a miracle. I mean yes, it was cool, and promising, but only a little promising.

Why did I feel the urge to downplay something so significant? Because in my experience, good news is a fragile thing. Promise is porcelain, best if packed in bubble wrap and tissue paper. It wasn’t you I wanted to protect. It was me.

Two weeks ago, I sat with my spiritual director in his home on the MacKenzie River. I told him how I never think about the future. That it’s a place I don’t go anymore. I used to be a sentimental dreamer back before my heart broke over my son. My heart isn’t broken anymore, but I still don’t dream. And sometimes, I want it back—the ability to imagine what better days might look like. I miss it.

So that afternoon, I closed my eyes and I did something new. I went there. I imagined what the future might look like Jack, who turns sixteen in just six short weeks. I visualized the scenarios that parents in my position know all too well: he lives with Sara and me until we die; he lives with his siblings (but dear God, they’ve given so much already); he lives apart from all of us in a group home.

These were vague, shadowy images, because I didn’t want to get too close, or move too quickly. I felt like I was crossing a frozen lake.

And then, just when I was ready to open my eyes and return safely to the present, I asked myself a terrifying question: What if? As in… What if something better happened?

What if this new texting breakthrough was a real breakthrough?
What if Jack fell in love with this type of communication?
What if it became habitual?
What if he used his device to tell us all the things in his heart?
What if he showed other people, too?
What if he made friends? Real friends?
What if he fell in love with the satisfaction of being known?
What if he got a job? The kind of job that helped him make sense of the world, and feel good about himself?

When I opened my eyes, my face was wet, and my stomach was churning. I thought I might be sick.

The truth is, I feel pretty well prepared for the harder scenarios. I’m ready for a life of minimal communication with my son. We’ve lived this way for a long time, and I promise you, we are plenty happy. Jack loves his family, and he loves me. We wrestle and we laugh, we shadow box in the kitchen, and we stomp out the rhythms to our favorite songs. We have a beautiful relationship. My boy is enough for me. Right now. Like this. Today. He is enough.

I’m not afraid of a long, dark road. No, it’s the brightness that haunts me; the porcelain light of promise. Because I have seen how easily hope shatters. I saw it happen too many times in the early days, and I thought I had recovered. But I hadn’t. My stomach remembered. It reminds me even now, while I write these words.

Two more weeks have passed, and we sit in our church sanctuary, waiting for the recital to begin.

“Are you ready for this, bud?” I ask. Jack tilts his head, squints his eyes, and stares at the wall. This boy hates being watched, and he’s never done anything on a stage. We’re not sure if he’ll play today. I’m skeptical. Always skeptical.

But when Miss Debbra calls his name, he grabs his book and stands up. My friends across the aisle pick up their phones and ready their cameras. They know what this moment means.

Sara climbs the stairs with Jack and takes him to the keyboard. He pounds on the keys before getting situated. Just testing them. Then, he takes his seat, and in front of all those other kids and their families, he Decks the Halls with Boughs of Freaking Holly.

My friend are all texting me. ”The front row isn’t crying over here,” they lie.

And amid the cheering, I am reminded how much we all need hope in our lives. We can live without it, I suppose, if by “live” we mean “passing time on a spinning globe.” We can stare down on our feet and ignore the inevitabilities waiting at the horizon. But that is more loitering than living. I want to do something better. I want to lift my eyes; to watch for the sunset, with its dazzling blend of color and cloud. Because beauty awaits those who are brave enough to believe.

I’m getting there. I’m choosing not to downplay Jack’s progress. He is texting us. He is making jokes, and telling us things like, “I like it when I’m funny.” And he’s walking over to the piano, hammering out little riffs he’s heard on his favorite movies. This is beauty. This is growth. And even if it all shatters in another regression, I will come back here and preach this same sermon to myself, like I have so many times before:

Hope is good.

You Are Enough (A Letter to My Autistic Son on his 15th Birthday)

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Dear Jack,

Over the past several months, you and mom have been working at the kitchen table with your communication device. Since spoken words are still so tricky for you, we’re exploring this other way of talking. You touch the screen and choose between picture icons, common words, and a qwerty keyboard. When you find what you want, you string the words together, and the iPad says them aloud: “I want pizza.”

We’re not sure whether this will, in time, become your preferred way of talking. After all, you can tell us with your lips that you want pizza. You do that kind of thing all the time. But something different has started to happen with this new way. You’ve started making observations.

“Can you tell me something about this picture?” Mom will ask, sometimes with the help of the teachers on Zoom. It’s usually a picture of something you know: Mike Wazowski, or Kermit the Frog, or maybe even a real frog. This time, it was Moana.

I think the request didn’t make sense to you at first. Why would we want to know what you see in the picture? Can’t we see it ourselves? But they kept asking you, and you started to play along.

“Moana is pretty,” you said with the device.

Well then. Yes. Yes, she is. I’m not at all surprised you noticed that. You’re turning fifteen, after all. I was younger than you are now when Beauty and the Beast came out, and I noticed the same thing about Belle. Part of me is still a little bit in love with her, I think. So no, I wasn’t surprised at all. But we were all still excited to know it simply because you thought it.

And what about Maui? What did you notice in the picture of the gargantuan demi-god? The teacher asked the question, and you thought about it. You searched for available answers under the “S” listing. Mom thinks you were looking for “strong.” But it wasn’t there. So you backed out and found another word, which featured a stick man lifting weights with one hand. You clicked on it.

“Easy,” the device said.

Easy. Of course. He’s so strong, he can pick up boats and trees and probably mountains without breaking a sweat. Everything Maui does is easy.

“Jack, that’s so smart,” mom said. And she meant it. You gave a great insight. You saw a picture everyone else saw, and you shared your own, personal, Jack-thought. And it was a cool observation.

Maybe this doesn’t seem like a big deal to you, son, but it is to us. Your thoughts matter to us. Your thoughts are important. Your thoughts tell us more about you, and we want to know you as much as we possibly can. This is why we spend time working on the device even though it’s hard. It’s also why I often say things like, “what are you thinking about, bud?”

I’m explaining this because I am afraid we might sometimes give you the wrong idea. We might be accidentally hurting your feelings. Moms and dads do this kind of thing without ever knowing it, and then when their kids grow up and tell them, everyone feels bad. And one of the biggest ways this happens is when kids feel like they have to perform for their parents’ affection.

Some boys, for example, feel like they have to play football or basketball really well so their dads will be proud of them. Some girls feel like they have to get good grades and be perfect so their moms will think they’re valuable. And others—kids who have autism and have a hard time communicating—might feel like they have to talk to prove their worth. I hope and pray you don’t feel this way, but I know the pressure might be there sometimes.

Remember when we stayed at the cabin last summer? You loved it. We could see it all over your face. Maybe it was the way the lake was nestled into mountains, or how the sun hit the dock in the afternoon. I was sitting with you on the dock one of those afternoons, and you wore a serene smile. I asked you, “What do you like most about this place, Jack?”

You looked at me, and your mouth was open just a little bit. It seemed like you were considering the question and wanted to answer. And for just a moment, I thought you might do it. I thought you might say, “I like the color of the water,” or, “I like having Leeli here.”

Could you tell how much I was hoping for that to happen? And did it make you sad when you couldn’t do it? Did I accidentally put pressure on you to perform?

My dear boy, we have shared fifteen years of life, and of all the things I have spoken to you, this might be the most important: you are enough.

That’s it. You’re enough.

I love it when you can tell us what you think. I love it when you can communicate what you want. But you do not have to do those things to earn our affection. You never did. And if I’ve ever—even for a moment—made you think otherwise, I pray you can forgive me. Because there is a difference between what a boy can do and who a boy is.

Remember the “Jack and Daddy video” on the beach? I told you then that you were “a piece of God’s own daydreams.” I meant it. That is who you are. You are the flesh-and-bone dream of the Creator Himself. You carry His image, and our image, too. You are priceless to us, not because of anything you can accomplish, but because you are our son. You don’t have to talk about the lake or about Moana to prove it. You don’t have to do anything to prove it.

Work time isn’t going away, I’m afraid. It’s part of growing up. Sometimes I don’t like it very much, either. But we are so proud of the way you face the challenges. We know you’re not Maui. We don’t expect you to be like him. None of this stuff is easy. It’s hard, and yet you keep at it.

We’ve told you we want to hear your thoughts, son. Well, it seems like you’re starting to believe us. And now, I am asking you to believe this: we adore you, even when the words don’t come.

Happy Birthday,

Dad

How You Found Your Smile Again (A Letter To Jack, My Autistic Son)

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Dear Jack,

It’s been seven months since the world stopped. You were so sad in the beginning. You didn’t want to get out of bed, and you didn’t want to play. But the most shocking this was this: you didn’t want to watch movies. Do you remember that? It was the first time this has ever happened. The sweetest thing in your world seemed sticky and irritating. It was confusing for you, and for all of us. Miss Janell would probably call it “topsy-turvy.”

This kind of thing happened to a lot of us this year. Our worlds became topsy-turvy. We stopped loving our favorite things, and we grew obsessed with things that never did us any good. Some of us decided the best way to be friends was through a computer screen. Some just wanted to be entertained by shows all day and all night. Others just wanted to be left alone.

Well, it’s been seven months, and those choices haven’t made us happy. Instead, we all became more anxious. Stressed. I know you know what that word means, because you push it on your device when you need a break.

And now, everyone is stressed. They are stressed because of the sickness, and because we’re about to pick a president. And they’re worried about real things like health and jobs and liberties and families and the future. But you know what they do to fix it? They try to distract themselves with more pleasures. For you , that would look like this: more screen time, more news, and more peanut butter cookie balls. More, more, more.

The problem is that more doesn’t really solve anything. We can’t run away from the things that make us sad. We can’t bury them with more. Because too much screen time makes our minds foggy, and too many cookie balls makes our stomaches ache. Then, when we stop feeling sick, we still have to figure out what to do about sadness.

They need to learn from you, son, because you found your smile again. Do you know how? I think I do.

The first thing you did was to admit when you were sad. You started coming up to us in the kitchen, opening your arms, and saying one word: “sad.” Pretty easy, huh? Well, it worked.

This happens every day now. You say you’re sad, and we say, “oh you’re sad? Well let me give you a hug.” And you lean in (or with mom, you lean DOWN), and we wrap our arms around one another. You might cry a little, or at least pretend to. (Sometimes you’re faking because you just want a hug. We’re on to you, man!) But it works. We pat each other on the back, and then we back up, a little cheerier.

Son, I cannot stress this enough: we adore this. We love it so much. We love that you can admit your feelings. And we love that you let us comfort you.

There’s a fancy word for this that grown-us use: vulnerability. It means being honest about the things you’re feeling, and then letting others help you. I wish more people knew how to do this, because I think it would work for them, too. See, we’re not supposed to be sad by ourselves. We’re supposed to be sad together. That’s what helps us be happy again.

You didn’t stop there, however. There’s one other thing you did during this seven months that helped you find your smile. Do you remember when the masks started? Well, Miss Beth knew how much you loved beards, so she got you a big long one—like a Santa beard—and trimmed it down for you. For a few weeks, it became your costume and your mask. You stared at your reflection, lowered your voice like Will Arnett in Lego Batman, and said the word, “Beard. Beard.” Then you laughed and laughed.

Instead of getting upset about the masks, you found something to be happy about. You were thankful. There’s a fancy word for this kind of thing, too: gratitude. That’s the thing that makes us happy in the end. It’s not more stuff; it’s a grateful heart. Remember what Junior Asparagus sang with his dad in Madame Blueberry? “A thankful heart is a happy heart.” Because even when we’re afraid and stressed and the world is topsy-turvy, there are still hugs in the kitchen, and funny beards in the hall, and a dog to kiss in the living room. Joy is real, son. It is a gift from the same God who gave you to us, and who gave us to you.

Vulnerability and Gratitude.

You don’t have to remember those two fancy words. But I hope you never forget how they work. Because those were the things that helped you find your smile again.

Thank you for teaching us, son. We’re listening.

Dad

The Night He Found His Drum: Thoughts on Autism and Inclusion

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This is Jack. He’s fourteen years old, and loves watching movies and playing on devices. He has autism, anxiety, and obsessive compulsive disorder. Jack is functionally non-verbal. The words he does have are mostly clumped in memorized phrases, which he deploys at predictable times. His current phrase—and the most troublesome—is, “cover your ears.”
 
“Cover your ears” almost always comes in an urgent, high-pitched squeal. It often begins around four o’you-gotta-be-kidding-me in the morning. Practically speaking, he’s not talking about our ears, but about his own. The phrase means, “please for the love of everything good and holy, somebody plug some twisted up toilet paper in my ears, STAT!” (I know what you’re thinking… What a time to develop a T.P. habit! Pray for us…) We try to accommodate him as much as possible. We bought him washable earplugs, and we try to steer him toward his on-ear headphones, but neither satisfy him. His doctor can’t figure it out, and neither can we. Is this a sensory issue? A pressure thing? Or is he afraid of his ears popping? What’s going on?
 
This is our world. We are quarantined with mystery. It’s been that way for twelve years. Once in a while, Jack casually drops a piece of the puzzle onto the table for us, and it all makes sense. Those are days of great rejoicing. But those are also rare exceptions. And so far, he hasn’t been able to tell us why he so desperately needs to cover his ears, sometimes with multiple layers of protection. Those mysteries create separation.
 
Some weeks back, before the world started to stand on its head, we had some dear friends over for dinner. After we ate, kids and grown-ups gathered around guitars, pianos, and hand-drums to make memories. We’re not professional musicians, but we love to play, and to invite our kids to join in on the revelry. Of course, we never force Jack into evening hangouts, because he doesn’t want to come. He’s an introvert with covered ears. Besides, that’s his movie time. Sacred ground.
 
But something different happened that night that. My friend Corey started to play an original song on his acoustic, and Jack bolted in to the room wearing an expression I’ve only seen on him a handful other times. To call it a smile doesn’t quite cover it. This was a mega-wat wonder-gape; a wide-eyed rush of exhilarated joy. Imagine St. Peter’s expression on the day of transfiguration, and you’ll begin to see it. Jack’s entrance was so thunderous, we all turned to welcome him, but he only cared about Corey and his song. My boy took that beaming face of his and leaned in close to my friend, locking eyes with him. When they were twelve inches apart, Jack reached out and touched Corey’s beard affectionately.
 
I can’t explain it. Maybe he just liked the sound of the song. Or maybe he just liked the singer. Maybe he could sense that Corey’s gentleness—he’s a counselor after all, and who works every day with people on the spectrum.
 
Just throw it on the mystery pile, I guess. But here’s the best part: Jack didn’t merely like the song; no, he decided to join it. There was a conga drum sitting open, and he put it to good use. (That was when I grabbed my phone. The video is below. I was about ten seconds too late to catch the expression and the moment, but you can see him pounding away in earnest.) To our astonishment, he played with all of us the rest of the evening. We were  elated.
 
The memory of that night makes me stop and consider the nature of inclusion—one of the highest values our community seeks to uphold. If inclusion means everyone has to play together, I think we miss it. I think we end up forcing people together who might prefer to watch their five-o’clock special alone in their favorite room.
 
But maybe inclusion is better seen as an open drum: an invitation to join in on the jam session. Maybe it’s an environment of openness without time restraints. If that’s the case, it becomes a little easier.  Because I can’t presume to know what my son wants. He can’t tell me. I wish to God that he could. But if offer him a drum and the space to play his own rhythm when he’s ready, he might just take me up on it. He might get up and join the song.
 
Ever since that night, I have a new way to connect with my boy. We’ll pull out two congas and turn up Jack’s favorite movie soundtracks. We start with “Where No One Goes” from How To Train Your Dragon. It’s a fast song with pounding drums, and he likes to play fast until the drums cut out, and the flying music begins. When that happens, we stretch our arms out and glide like Toothless and Hiccup until the pounding resumes. It’s our new favorite thing.
 
He doesn’t always accept my invitation. Some days, he still prefers to “cover your ears.” But other days, the music gets through, like it did the night when Jack fell into Corey’s song. Can I share with you the words that set him spellbound?
 
“You Lord are tender. You’re beautiful and kind. Slow to anger rich in love
Look into my eyes, show me Your kindness again. I need Your strength to go on
 
For I’m Your child, I’m the creation of Your hands.
There’s no one who can save me but You
I am crying out to You only for I know that You always hear me
You’re the one I can count on morning to night,
And night back to morning.”
 
I won’t try to convince you that Jack understood all those words, and that’s why he reacted the way he did. You are free to draw your own conclusions. But I believe this with everything inside me: there is a melody that plays to all of us; a Godsong that beckons us into His living room. We can heed it or reject it, but most of us don’t have a problem believing that it might be for us.
 
But for those who haven’t had a place at the table—or a seat at the drum—that message can take a little convincing. It is for their sake, then, that we must move toward true inclusion. We must reiterate as plainly and as beautifully as we can: “You belong. You matter. You are a part of this sacred company. And we welcome you into this place, whenever you are ready.”
 
 

Special thanks to Corey Jackson, for the moment and for the lyrics to Morning to Night.

God Made Us Incomplete (A Letter to My Autistic Son on His 14th Birthday)

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Dear Jack,

This morning, were were both up early, and we sat together in the dark living room in front of your favorite heater. You were wrapped in your soft blanket, and I had my cup of coffee, and you leaned in close and put your head on my shoulder the way you have since you were eight. But your head is so much heavier than it used to be; your legs are so long, and your forehead so bumpy with adolescence. You’re not a child anymore. 
 
Many things in your world are changing. Your big sister just turned eighteen, for one thing. Soon, she will go to college, and she will leave her bedroom. We won’t see her as often because she will be making a new life with studies and friends, and I imagine she’ll even have her own family someday. You will miss her. We all will. But it will be a good kind of pain.
 
Not everything is changing, though. For example, this morning when we sat together, all of a sudden you broke the stillness and started to laugh. I asked you what was so funny, because I really, really wanted to know, but you couldn’t tell me. This has happened for many years.
 
One of the greatest desires of my life, son, has been to crawl up inside your head. As the song says, “I want to see your thoughts take shape and walk right out.” This has happened from time to time—little moments with speech, movie quotes, and communication devices—but words are still very hard to come by. And I find myself thinking more and more about your years to come. I don’t worry so much about things changing. No. I worry about them staying the same. I worry that we might never know the beautiful pain of watching you, our son, make your own life.
 
When I say “make your own life,” I don’t mean you’ll be alone as you grow. I promise, you won’t. We will always have a home for you. We’ll always keep a bedroom, a soft couch, and a TV stocked with Muppet movies. And even after mom and I are gone, your brothers and sisters will be here to help you make  waffles and cookie balls. You will not grow up by yourself.
 
 
It’s the circle past your family that I worry about. Your struggles to communicate have kept that circle small. For years, You’ve pretty much just opened up to us and Miss Janae (I know you miss her, too), Miss Beth, and your teachers and therapists. But in order to find our way in life, we have to let others in as well. People our own age, I mean. People we like to laugh with and be with. I’m talking about friends.
 
You see, son, when God made us, He made us incomplete. He made us small, with weaknesses—with joys and sadnesses that are too big and heavy to carry on our own. That sounds bad until you realize that he also made other people who are also incomplete. He wanted us to lean on Him, and lean on one another. Together, we can share our favorite movies, our favorite snacks, and the stories that make us cry. Our incompleteness is a good thing, then. Because Mike Wazowski needs James P. Sullivan. Kermit the Frog needs Fozzie Bear. Even Lego Batman—who never thought he needed anyone at all—realized that being alone wasn’t enough in the end.
 
Maybe you’ve been too scared to make friends. One time, you said you thought you were awkward. Is that why? Do you think people won’t like you? Or do you think it will just be too hard to show people your favorite things—to tell them the funny jokes inside your head? I can’t promise you it will be easy. Some people are mean. Some kids will probably hurt your feelings. But then, you’ll meet others who love waffles and Lego Batman just like you. They will want to know what makes you laugh, and even if you can’t tell them, they’ll still want to sit next you.
 
This is what we want for you, son. And we’ve been worried you might not find it.
 
But then, last week, you surprised us. Miss Natalie was working with you, and she asked you about your birthday. You haven’t wanted a party before, but this time we asked if we could do one and you said yes. And when she asked you if you wanted to invite any kids from school, you took out your communication device and you did something you’ve never done before. You typed other people’s names:
 
Lenny
Jalen
Hudson
 
Three kids from your school.*
 
That itch to be known—that is a good thing, son. It’s scary, but it’s good. We have always felt it for you, but we didn’t know you felt it for yourself. Those three names gave our hearts new hope.
 
Even if the Lenny, Jalen, and Hudson don’t come to your party—or if they come and you don’t have a good time—I can promise you this: your family will still be right here with you like Lightning McQueen’s pit crew, helping you navigate your race to adulthood. And in the early mornings, when you just want to stop and be still, there will always be a quiet spot next to me in front of the heater.
 
I love you, Jack, and I’m ever so proud of you. Happy 14th Birthday.
 
 
Dad
(a.k.a. Padre)
 
 
 
*not their real names
*Feature images courtesy of Anne Nunn Photographers. Thanks to our own Miss Beth Donovan for the flannel pics. He knows he looks good in flannel 🙂
 

Uncertainty and the Embrace of Sacred Gifts

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Close your eyes and you’ll picture him—a rail-thin boy running from his puppy, shrieking with laughter and fear. He’s still learning to work his stretched out limbs, and his voice has not yet settled on a tone after its pubescent free fall. Everything about him is in transition. Our boy is covered from head to toe with uncertainty.

The dog, in contrast, is small and much more at ease with herself. Sure, she looks like a shaggy plush toy—a walking blond carpet with little dark eyes—but there is a strange intentionality about her that I didn’t expect. When the smaller boys chase her, she chases back; when they play rough, she bares her teeth and takes aim. But she responds differently to the uncertain boy. She doesn’t bite him. And when he starts to scream, her movements slow, and she grows calm.

This bodes well for Jack, our boy with autism and fierce anxiety, because this dog is to be more than a pet. She’s a three-month old Labradoodle, and in two weeks, she will begin training to become his service dog.

When he sees her walking around the house by herself, he gets nervous. When the laughing shrieks begin, we have to remind him, “Jack, she’s not running after you. She’s being nice. You should pet her!” That’s been a tough sell for him. When the anxious switch is flipped on, all he can see is the uncertainty of the situation: when no one is holding the dog’s leash, there is much to fear.

Eleven months ago, I sat on a bench in my favorite town—Cannon Beach, Oregon—and watched the birds patrol the dawn. To say it was a perfect morning wouldn’t do justice to the way my heart felt. The truth is, I was full to bursting surrounded by that art—the purple skies behind Haystack Rock, and the seagulls playing tag with the unhurried waves.

It was an off-brand experience for me. I’m the guy who talks about the mingling of gladness and sorrow, after all. But that day there was no shadow, just light. There were no tears, just beauty. There was no sadness, just hope that there might be more days like it–that life might be more than aching joy.

The possibility brought me to tears. I felt like Lucy, discovering the magic of a wardrobe to another world.

Then, two weeks later, Janae got cancer, and the spell was broken.

Janae’s death has loomed large over our lives this year. I won’t bother you with the mundane details of mourning, because many of you mourned with us. It is pretty run-of-the-mill stuff anyway. We’ve cried until we thought we were done. Then, a new holiday comes, and we feel it all over again. Who knew grief would cycle with the seasonal sales at Walmart?

No, I won’t bother describing it all, but I will say this: her death felt to me like a Divine bait-and-switch. And maybe I was just too sentimental in the first place. Maybe I read too much into the magic of that morning. Maybe it’s on me. But for a handful of days, I took the experience as a promise that I might be able to switch joy off and on like a light switch. I thought it meant I had some control over my own inner world. But tragedy doesn’t work like that. When a storm comes, you don’t choose for the power to go out. It just goes out.

There’s a funny thing we’ve seen with Jack and his dog. All he has to do to relax is to pick up Leeli’s leash. He takes it in his hand, turns around, and starts to smile. And I think to myself, “You know she could still get you, right? You’re not any safer than you were three seconds ago.”

When I first saw this, I thought about how even the illusion of control can calm our fears. If we can convince ourselves that we’re the boss of something—anything, really—life can become suddenly manageable. The idea made me laugh.

I was wrong, though. This isn’t about Jack’s control over Leeli; it’s about his control over Jack. When he picks up the leash, he might not be any safer, but without question, he is braver. When he pulls the dog closer to him, he pulls his uncertainty closer, come what may. It is a posture both of surrender and of power: he is vulnerable, yes, but at least he is choosing his vulnerability. He is scrunching up his nose and letting his fears lick him in the face.

And I wonder if there isn’t something in this picture for me. For all of us. Because choosing joy will never be like flipping a switch. Not in a world where even good dogs turn on you. Not where cancer grows in secret, and doesn’t show its face until it’s too late. Some days, mourning overtakes us again, and the light switch will not work no matter how many times we flip it.

But even if we have little control over our circumstances, God has not left us powerless. Indeed, he has given us a choice: we can pick up the leash. We can choose to engage the uncertain days, even when our hearts are stuffed full of fear. If we do, we will cry sometimes, yes. But we will also find mornings of pure, unfiltered joy.

The perfect sky over Cannon Beach was not a promise that all will be well forever and always, or that I could henceforth amputate pain from laughter. Rather, it was a singular gift: a “sacred moment of delight,” as a friend called it. And I’ll be honest: I need more of such moments in this new decade. I need more sunrises; more rolling waves and dancing birds. I was not made to hide from such gifts; I was made to glory in them.

You were, too.

An Open Letter to Fellow Pastors Concerning Special Needs Families

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Dear Friends,

I wonder if you recall the great “unreached people group” boom of the 80’s and 90’s. I was growing up in a missional community back then, and we were always talking about completing the Great Commission. We would lay giant world maps over the floor, praying for the tribes and nations who had little to no exposure to the good news of Jesus Christ. We wanted to go to them, to show them that God loved them. And we did.

It was a fruitful push, but I fear we were somewhat farsighted. With such a broad, global focus, we often missed the unreached people living in our own neighborhoods. One group is especially dear to my heart: special needs families. It’s not that they’ve never heard the gospel; it’s that they often have little to no access to church life. Their situations often present significant obstacles to joining a faith community. But they need you. They need the love of your communion. And you need them, too.

I could tell you my own story as a pastor and special needs dad, but if you follow this blog, you probably know it already. So instead, I want to tell you about Kyle.

Kyle’s Story

When Kyle came to us, his parents were barely hanging on. In truth, they were in survival mode. Having adopted six kids from some incredibly difficult situations, they were grappling with a variety of significant disabilities and mental health issues. Kyle, their ten year old, was probably most affected. He dealt with autism and considerable learning disabilities, as well as with behavioral issues like anger management. He was a flight risk too; a big kid with violent outbursts and an urge to slip away through the window!

Kyle’s parents needed a break from the world. They needed ninety minutes free on a Sunday morning in order to worship God and remember His love for them. Kyle needed a break from the world, too. He needed a breather from danger, from outside judgment, from an impatient culture, and from peers who made no effort to understand or include him.

Our Sunday morning accommodation was simple enough. (I wrote an article about it back in 2012, but we have learned and adapted much since then). We had a room set aside for kids like Kyle–kids who couldn’t abide the main service, and who were too stressed out to stay in the kids’ service. The “Open Heavens Room,” as we called it, was furnished with simple tools designed to help children dealing with sensory issues. We hired a local expert who knew how to help these children relax and make sense of the world. Lori was skilled, patient, and kind. And she trained other adults to take walks with our Kyles, get to know them, and help them bravely enter the kids’ service when they felt up to it. (My wife Sara, our children’s pastor, led the charge on this effort. She talks about it briefly in the video below:)

For families like Kyle’s, the Open Heavens Room proved to be more than a respite; it became a front door to our congregation. Our family. And isn’t this what church is supposed to be? Isn’t this why some of us still call one another “brother” and “sister?” It sounds almost cheesy–a relic of a bygone era built of crusty rules and religiosity. But words matter, and relational tags can serve to remind us of a deep truth:

Church is not a exclusive club, or a brick building, or a solemn event on Sunday mornings. Rather, the church is people — siblings of different blood, but of the same Father. Church is family.

When we make accommodations for people like Kyle and his parents, then, we are giving them an opportunity to take their shoes off and walk into our living rooms. We are telling them they have a place at our dinner tables. We are telling them, “you belong.” If we overlook the the special needs community, however, most of them will remain outside the family. They will continue on, unreached.

Our church embraced Kyle’s family more than seven years ago. Sunday morning was only one part of it. There were plenty of other parts: meals and moving teams, consistent prayer and counsel, gifts and enduring friendship. The journey hasn’t always been easy for him, or for his parents. But they pressed on, and he pressed on, and we pressed on with them. All of us grew together.

After years of therapies, prayers, and support, Kyle was doing much better. On Sundays, he no longer needed the Open Heavens Room, and was spending church with his peers. That was our goal in the first place: we want our people to be together. But he was still having significant challenges with schoolwork. His mom was homeschooling him, but she was still running up against his learning disabilities. That’s when she asked my wife if Kyle could spend a few hours every week helping out at the church offices. Such an arrangement would give his mom a breather, and it could help Kyle learn some important job skills for down the road. We were happy to give it a shot.

At first, Sara was giving him busy work, like preparing kids crafts and shredding paper. But soon, his confidence started to grow, and everything changed. Our administrative pastor, Janell, started entrusting him with harder projects, like changing ballasts on fluorescent lights. He learned to do research online, watching Youtube videos, asking good questions, and going to work. And he just kept learning…

Today, Kyle is sixteen years old, and he is a paid member of our church staff. He worked himself into a job. He has grown into a kind, hard-working young man, and is a true asset to our team. The guy just gets stuff done, and we love having him around.

Not only that, but his parents–those brave souls who took on so much–are not living in survival mode any longer. Their life is still full of challenges, but they are able to stand, steadfast and overflowing with compassion and wisdom for other parents in our congregation. They are an integral part of our family.

My Challenge

When Jesus bid us to “let the little children come,” it wasn’t just for the their own sake. We benefit from their presence as much as they do from ours. Children facing challenges like Kyle, or like my own Jack, possess rare qualities that enrich all of us. They are overcomers, and carriers of hard-fought joy. This is the nature of God’s interdependent kingdom: we need each other.

And yet, there are countless families who are left out of this circle. They might live across the street from a church, yet they remain unreached. Many of them have made an effort before, but it grew too difficult. Too confusing. Maybe their child was too noisy during a service. Maybe someone made a rude comment about a lack of discipline. Maybe someone told them to find another church. I’ve heard all of these stories more times than I can count. These families deserve better. These children certainly deserve better.

Truly, our churches can become safe havens for these weary souls; oases where they can drink deeply from God’s spirit and God’s people; communities where they can breath and thrive.

You don’t have to replicate what our church did. Every situation is different, after all. But if you will open your doors to these families–if you will seek them out, listen to their stories, and find even small ways to accommodate them–you will not only be helping people in need; you will be giving a beautiful gift to your entire congregation.

So, fellow laborer, I urge you: let them come.

For more information on how to start a special needs ministry in your church, check out KeyMinistry.org. This is a wonderful network of creative parents, experts, and ministers who are actively exploring this need in exciting and creative ways.

And if you are in the Eugene area on March 7th, 2019, join us for A Child To Love, as we explore this issue in more detail. Here is the promo video:

You can register here.

My thanks to Kyle and his family for letting me tell their story.

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.

Our boy deals with anxiety, OCD, seizures, and lost motor skills on top of autism which makes navigating every day like tackling a ninja warrior course. Today he conquered. #ninjawarrior #Poandthefurioussix #Pureawesomeness

Posted by Sara Hague on Thursday, August 9, 2018

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!

The Horse and His Laughing Boy

Major #FridayFeeling happening here… Listen to that laugh! Jack, like many kids with autism, deals with SO much frustration, so when he finds this kind of delight in anything, it warms us all to the toes. No aching here. Just pure, unfiltered joy.I know other #specialneeds parents out there can relate. Do you have a pic or video of your kid finding their happy place? I'd love to see it in the comments!Big shout out to Wild Ones Youth Ranch and our friend Beth!#asd #autism #horsetherapy

Posted by Jason Hague, Writer on Friday, November 16, 2018

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

On the Steps, Waiting for a Bus

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It’s transition season in Oregon. The mornings have settled on being cold, but the afternoons remain indecisive. Autumn is crowding the portcullis with her pitchforks and battering rams, but summer is rallying for one last defense.

Jack and I sit outside in our short sleeves, watching our breath and waiting for the morning to turn. It is transition season for us, also. His bus is coming. I have a bus coming, too. One I’ve been waiting years for. It’s almost here. And my heart feels skittish and jittery.

This morning, Jack is as keyed up as I have been. He doesn’t speak, but shrieks, with all the syllables jammed together into one. If you don’t know him, you wouldn’t understand a word. “Happy Feet is coming!”

“No,” I tell him in something just above a whisper. “That’s not a choice.”

“Turbo deleted!”

“Let’s think about something else,” I say. Movies, after all these years, are still his go-to fixation. When he’s happy, he wants to watch them. When he’s upset, he wants to yell about them. About the order in which they appear in his iTunes library. About the ones he wants but doesn’t have. About the ones he has, but wants to hide. Or about the ones he hid yesterday but wants to see again. No one ever said anxiety was rational.

“Here, sit down with me,” I say, and he sets his backpack on the step and slides onto my lap. I rub his back gently.

“Are you happy about school, or are you sad.”

“Sad,” he says.

“I’m sorry. Sometimes I don’t like to go to work, either. Sometimes I wish I could just stay home.” He quiets down. I keep talking. “Are the other kids nice, or are they mean?”

“Nice.”

“Good. Is your teacher nice, or is she mean?”

“Nice.”

These one word answers aren’t always accurate. Sometimes he just repeats the second option. We’ve tested this many times by flipping the choices. Sometimes his heart isn’t in it. He’s just giving us what we want. We like words, and he obliges us. But this time, I can tell he means it.

“Can you tell me the names of any of the kids in your class?”

I’ve asked him this one before, but it’s been a bridge too far. Even now, he stares out at the road, offering no answer. I look away for a moment as my mind starts to wander. I begin to think about my book, and whether anyone is talking about it on social media. About all the things I feel I have to do to make it a success. It’s a well-worn, anxiety-ridden neuro-path. What if no one reads it? What if they don’t like it? Or, what if everyone reads it and likes it, and they start to think I’m some kind of expert at being a dad? What if they think I’ve mastered all the sorrow all the time? What if they think I’m a better man than I really am?

And then I slam on the breaks. I stop my mind from wandering before it gets too far, because I want to believe my son might actually give an answer to my question. I want to keep on believing that he can grow in his communication skills. That means when I ask him something, I stay present. I exercise patience, and I expect an answer, even while I doubt. This is how I honor him. I wait and see.

He doesn’t respond today. Not with words. So I speak again. I tell him what I always tell him: that I love him dearly. That I am so happy he is my boy.

Then I notice how he he leans into me and rubs his forehead on my beard. I feel how still he has become with my fingernails grazing his back. His misty breath is steady, and his muscles calm. These are his words today. His silence washes over me; his stillness forms a psalm of contentment. “It’s going to be okay, because thou art with me.”

My heart knows this song well. I’ve sung it a thousand time and forgotten it a thousand more. But it’s transition season, and my bus is coming, and I needed to hear it again; to sing it once more to my own Father, and to let my heart be still.

 

Undoing the Collateral Damage of Sorrow

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Last month, I had one of those ugly self-revelations that was so obvious, I couldn’t believe I had never seen it before. It happened when I helping my wife with her duties as children’s pastor. I was running around playing keep-away with a gaggle of grade school boys and a nerf football (because I didn’t own a real one). There were fumbles and recoveries and overthrows and tackles that weren’t quite tackles (because I told them not to tackle, but they are boys, you see, and they can’t always help it). And there was so much laughter, it was clear they they were enjoying our game almost as much as I was.

Then, my own six year old son grabbed the ball, flashed his trademark grin, and took off running. And when he did, the revelation began, “man, Nathan’s pretty fast for his age.”

I stopped in my tracks and looked at my shaggy nine year old, Sam, and I saw he was fighting and clawing for the ball, hair flying in all directions. And that’s when the ugly truth hit me like a head-hunting free safety: all of this felt way too strange and novel.

That’s because I never play football with my sons. Ever.

I know, I know, who cares, right? Dads do all sorts of things with their sons. But see, this is different for me. Sam and Nathan are the youngest brothers. Their big brother Jack has severe autism, and when he first came along, I had all these giddy dad dreams about what our life together would be like. At the center of those dreams was sports. Football in particular. I grew up playing football every day with my brothers, and watching the Cowboys rise to greatness in the 1990’s. I was okay with the fact that my daughters didn’t care for sports, but I wanted to share that part of our family culture with my son.

Like all dads in my position, however, I had to let go of all that. I had to throw out the blueprints, because autism has ideas all its own. For years, I floundered, trying to adjust my expectations and figure out how to be a dad to my son. I wore sorrow like a cape in that season.

But eventually I came out of my malaise, thanks be to God, and I figured out how to love my boy in his own way. We don’t play football together, but we do go on scooter rides, run movie lines, throw dance parties (sort of), and play tag in the office. We even make movies and put them on the internet. We have a great thing going, Jack and I.

And now you see it, though, don’t you? Jack’s little brothers. What about them?

Here they are, all rough and tumble and hungry for roughhousing time with dad, so… why hadn’t we play sports together? How had I not realized Nathan was fast? How did we not own a football? Could we not be moved to establishing a regular schedule of sports despite all the sports broadcast on live TV we’ve been getting entertained with?

I’ve been circling these questions for the past month, and I still don’t understand them. Maybe I’ve been scared of betraying Jack–as if the bond of sports would inevitably bring the younger boys closer to me than he is. If I can’t share that connection with Jack, is it even fair that I would share it with his little brothers?

Forgive me if I sound a little melodramatic. I honestly don’t know my own heart, here. But this much is clear: my long chapter of sorrow, though it’s mostly closed now, still carries repercussions, especially for my sons. And it’s utterly unfair to them.

Despair is an equal opportunity thief, stealing joy not only from the one who is struggling, but from all those around him as well.

At first, when heartache strikes, there is almost no avoiding the pain. If you try to mute the sadness and pretend it’s not affecting you–if you grit your teeth and paint on a smile–you will end up muting all the good stuff too. It won’t help. You have to be honest about it. You have to deal with it. You have to be sad for a while. I don’t know if you can avoid that.

Indeed, we will always carry some sadness with us. But sorrow makes for a poor destination. It is supposed to be a wayside stop. A hostel, even. I stayed there for far too long. My wife paid the price for that already. Jack and my daughters did, too. Now, I find my younger sons might feel it.

I’ve been working to undo the damage since I recognized it. I’ve been intentional about spending more time with them. More FUN time. We’ve gone swimming and done laser tag, played monopoly and watched movies. And yes, we’ve played football, too. Finally. I bought a nice football. And we’re all loving it. Sam is learning to throw a good spiral, and Nathan does this hilarious thing where he points his left arm out straight before he throws the ball. “I’m aiming!” he said, as if he’s shooting a bee-bee gun. We’ve got some work to do, but boy, he makes us laugh.

Then, one morning, Sam and I went hiking by ourselves up through the foothills of the Cascade mountains. We walked four miles up and down a fantastic ridge (the same one we filmed the Aching Joy promo). We talked and laughed and took pictures and found a cool cave–which boys love above all things–and I kept thinking about all I’ve been missing.

“I’m sorry, Sam,” I told him just before we got back to our car. “I should have been doing this kind of thing with you a long time ago.”

“You don’t have to apologize,” he said. “You’re doing that kind of thing right now!”

I laughed, and swallowed back a tear, because my son is wiser than me. He understands the simple requirements of repentance. To repent of wallowing, we simply stop wallowing. We ask forgiveness and start again, this time in the other direction. But if we load ourselves up with unwieldy regrets–if we insist on crawling the steps of shame flight after flight–we will continue to miss all the moments we’ve regretted missing. And what a bitter irony that would be.

Was my season of sorrow inevitable? Probably. Did I stay too long? Absolutely. But even that mistake, however tragic, was not fatal. We live in a world where new forests grow after the fires come. Redemption lives here. That means there are still fly patterns to run and hills to tromp and jackpots waiting for us to land on Free Parking. Fresh joy with every sunrise.

What about you? Are you still sleeping in cheap motels of stale regret? I get it. Believe me, I do. But that place is not your home. The sun is coming up, and “His mercies are new every morning.”

It’s time to move out. It’s time begin again.

Aching Joy (A History and an Invitation)

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This summer marks six years since I fired up this little blog. I only did it because I wanted to build a platform for fiction. Yes, fiction. I am a storyteller at heart, and my plan was to start posting short stories, then move toward novels.

But soon, two unexpected things happened. First, I wrote a personal post about Jack, my autistic son, and discovered it felt good to do so. I have a high regard for journaling, and I like to tell other people they should journal, but for some reason, I never really did it. Ever since that first post, though, blogging become like my own public journal—a way for me to process my own thoughts and feelings about my son, and what it meant to be his dad.

The second surprise was this: people actually read those posts. They cared. At first, it was mostly just friends and family who wanted to understand what Sara and I were going through. But over time, more readers came, shared, and commented.

Aching Joy | Official Book Trailer

Guys, check it out: it's the offical #AchingJoy book promo! We're getting close to the October 2 release date, and I can't wait for you to read this book. You can find out more about it (and pre-order) at AchingJoy.com.

Posted by Jason Hague, Writer on Tuesday, July 17, 2018

Soon enough, however, I grew tired of the controversies in and around the autism community. I wanted to tell my story, but I didn’t want to take sides in the squabbles over terminology, vaccines theories, or whether or not autism was a blessing in disguise, etc. I already had enough drama in my life, thank you very much, and I didn’t want more.

So I quit.
Then I un-quit.
Then I quit again.
“I don’t want to write about autism anymore,” I’d say.
“Okay, I guess I’ll do one more.”


That went on until 2016, when my wife told me to open up my eyes and acknowledge that there was something valuable in our story. People were drawing strength from these posts. “God is in this,” she insisted.

So I listened to her, and two months later, I released a video called “A Reflection of Aching Joy.” I didn’t write that poem for the masses. It was for my boy. I wanted to express how I felt about him. But the masses saw it anyway. Tens of thousands of shares and three million views later, one sentiment rose above the rest: the video was sad, but it was hopeful, too. It was painful, but it was somehow joyful at the same time. It was raw, but it was also optimistic.

That bitter-sweet seed grew into the backbone of the book I never intended to write but am about to release. It’s called Aching Joy: Following God through the Land of Unanswered Prayer. This is not a book about autism, but about the co-mingling of pain and beauty. Those themes, I’ve found, are universal. We all experience hardship. We all feel the tug of despair now and again. But we also experience grace in the middle of it all.

Thankfully, I’ve learned a few things on my journey. I’ve found some treasures in my darkness, and I want to pass them along to you. Your situation is different than mine. You might be dealing with loss, sickness, or rejection. Wherever you are in that journey, I think this book can speak to you. I really do.

So, with all of this in mind, I’m opening up the Aching Joy Launch Team. I’m looking for people who are excited both about the message of the book, and about getting it into the hands of the public. I’m looking for people who want to read the book before it releases on October 2 (launch team members will get a free digital copy), and share some great online conversation in a closed Facebook group with me, my wife, and with other readers. This group isn’t just for autism parents; it’s for you, whatever you’re going through. We are in this together. We’ll process our thoughts with one another while we are reading. We’ll encourage each other on our own journeys. And then, we’ll spread the word to the rest of the world.

If that’s you, I’d like to invite you to click the link below, get the details, and apply to join this little community of pilgrims. Together, we will find joy in the midst of our aching.

***

UPDATE 10/15/2018: The launch team was a great success. Thank you for those who jumped on board! Of course, since the book has released, the team is closed.

Autism and the Two Shades of Uncertainty

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Uncertainty is a humiliating reality. Just when we begin to wrap our minds around a situation, a new question flies in out of left field to make sport of us and our silly conclusions. So we try again and it makes sense for a while, but then comes another baffling surprise to humble us. And we think, “Did we understand anything at all? Ever?”

For special needs parents, this cycle can be especially dizzying. Mystery has permeated our family life this year. Jack, our twelve year old with severe autism, had brain surgery in early January, then suffered a major regression in early February. We don’t know why it happened, but his anxiety has been more or less out of control, and it has affected the entire household. We’ve been more stressed and less patient. We’ve been more tired and confused. And we’ve been thinking more about the very uncertain future our boy faces.

I told you a bit about all this early on: how his sacred list of iTunes movie titles provided him with comfort, and how he began to rely so much on that comfort that he would suffer a meltdown when nobody recited it for him. Well, this problem persisted and expanded. He started asking new questions about his favorite movies (particularly The Good Dinosaur), and would demand a very specific response. Here’s an example.

Jack: “Good Dinosaur is number one?”

Us: “Is it?”

Jack: “Yes.”

Two seconds later.

Jack: “Good Dinosaur is number one?”

Us: “Is it?”

Jack: “Yes.”

And again, and again, the scripts would go until late in the night when our nerves were shot. We would close the door and tell him to go to sleep, but then the screaming would begin. He needed his sentences; he needed our repeated assurances that the world wasn’t going to tip over while he slept.

Jack: “Good Dinosaur deleted?”

Us: “No, Jack, it’s not deleted. It’s your favorite movie. Go to sleep.”

Jack: “GOOD DINOSAUR DELETED?!?”

His sisters started retiring to bed early without the customary game nights with mom and dad or the shared episode of The Office. And his brothers became refugees in their own home. If they stayed in their room with Jack, they would have to feed him lines all night long, and none of them would sleep.

Things turned around a bit in May, but he’s taken a dip again since Apple auto-updated some of their iTunes movie covers two days ago. The Good Dinosaur picture is different. It’s just Arlo now. Spot is gone, and Jack’s head is exploding.

Through this season, our most successful strategy has been “Super-Happy-Funny-Voices-Dad-Mode” at bedtime, in which I talk to him in the familiar voices of his favorite movie characters. Some nights, Mater and Lightning McQueen (I do a KILLER Owen Wilson, guys… very proud of it) talked about the virtues of sleep until Stoic the Vast and Hiccup warned of dragons who tickle. Sometimes I do Gru (this one’s also pretty strong, I think), and the younger boys jump in as the Minions, and we get Jack smiling and giggling before the lights go out. The overall result has been a calmer, easier to please son.

“Daaaaad?” He will call after I say goodnight. And I’ll march to the entrance of his room.

“Yeah, buddy?” I ask in the most chipper voice you can imagine. It’s nauseating, really.

“Good Dinosaur IS number one?” he says.

“Is it?”

“Yes.”

“Awesome. Okay, good night buddy!”

We have had encouraging success with this strategy. I think it’s because he’s like many of us: he hates the feeling that he might be making people upset. I think he knows when we are frustrated with him, and it tears him up inside and makes everything worse. I think he feels terrible about his meltdowns, but he can’t stop them. Thus, a calm and pleasant voice seems to be good medicine.

But now I keep wondering this: how do I ensure “Super Happy Funny Voices Dad Mode” doesn’t become like the movie list–the new thing Jack can’t live without? How do I keep the medicine from become the new obsession? I’ve never had to think about the concerns doctors and pharmacists face regarding pain and addictive medication. I think about it all the time now.

The world is so unpredictable that today’s clear solutions can, without warning, morph into tomorrow’s problems. Mystery is a bully.

But there is another side to uncertainty. A brighter side. The openness of things can, in turn, be a blessing. In the special needs parenting world, for instance, there are myriad sad pronouncements about the future:

“Your child will never speak.”

“Your child will never have friends.”

“Don’t get your hopes up, because he won’t read, let alone graduate from high school.”

Such predictions usually come from the well-meaning: the self-proclaimed realist, the overly-protective family member, or the multi-credentialed expert.

The fact remains, however, that our tomorrows are not set in stone. There are too many examples from children among our own ranks who overcame; relentless kids with tireless parents, forging a way past the curses toward breakthrough. Maybe it comes through a therapist, or a drug. Maybe it comes through a prayer. Maybe something just clicks one day.

So it seems uncertainty has another name: we call him possibility.

That means we can’t despair in this season, and we aren’t despairing. True, we don’t know what might be around the next bend, and that’s a cause for fear. But that is also a reason for hope: we don’t know what might be around the next bend. Today is a new day with real openness built into it.

So how do we carry ourselves through our enigmatic lives? We pray, we endure, we love, and we keep leaning into the mystery. Breakthrough will come, but we don’t know how or when. Life is full of uncertainty, yes, but hovering over it all is the God of Possibility.

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 Just Want Someone to Understand

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“So, what’s the story with these pictures?” That’s one of the first questions people ask when they step into our living room, and for good reason. Variations of this image line our bookshelves. They belong to Jack, of course, my eleven year old with severe autism. They are screenshots of his iTunes movie library, his most prized possession. The only thing Jack wants in life is to sit in the living room all day long and watch these movies, or to watch these pictures of his favorite movies.

The library image varies depending on what device Jack is using, and sometimes, when he gets tired of a movie, he’ll hide it, and the configuration changes. When he’s satisfied, he’ll take a picture of it on the iPad and ask us to print it out. We’ve done this, I’d wager, well over two hundred times.

But there’s more. These images have their own names. He might call one “White Turbo Eight,” and another one, “Black How to Train Your Dragon five.” It took us a while to decipher that code, but we got it. The color is all about the background. The number is the order in which the movie appears.

I confess, I don’t see the internal logic of these images, but that’s not the point. It matters to me because it matters to Jack.

These pictures, and especially this one (“White Good Dinosaur One”), seem to supply Jack with the predictability he hungers for. And when times get tense, he wants our reassurance: yes, son, if there’s one thing you can count on in this moment, it’s that “Good Dinosaur” is in the first position.

Last night, Jack melted down after his little brother started crying. It was pretty bad. Worse than we’ve seen in a while. And when the dust settled, he had lost his movie privilege.

Nevertheless, he crawled in our bed in the wee hours, still a little worked up from last night, I think, and squealed, “Good Dinosaur!”

I hate seeing this boy so weighed down with panic. Anxiety is the most severe and the most troubling of all the comorbid conditions that come with his brand of autism.

I want to make it all go away. The boy needs peace.

“No movies today,” I whispered, pulling him close. “But it’s okay, we’re not mad. You can watch movies tomorrow.”

He relaxed for a few minutes. Then it flared up again.

“One Good Dinosaur!” That, I knew, wasn’t a plea for the movie but for the screenshot. He didn’t want to look at it just then. Rather, he wanted to make sure I knew the order of the movies on the screenshot.

Fortunately, I did.

“One Good Dinosaur,” I began. And already, he was whispering the words with me. “Two Dragon One. Three Dragon Two. Four Inside Out. Five Wonderful Life.” (No seriously, he loves George Bailey.) “Six Monsters University. Seven Monsters Inc. Eight Planes. Nine Planes Two. Ten Turbo. Eleven Up.”

At that, he breathed a little easier, and nestled his head into my shoulder.

Look, I don’t know how it works. I just know sometimes, all we need is someone who understands what’s important to us, even if they can’t understand why it’s important.

Try as I might, I cannot interpret the internal fires that burn inside my boy’s bones, and I can only guess at why this little sequence cools them. I just know that it does cool them.

And all of it makes me wonder whether our general appetite to be understood is ultimately misguided. How can anyone truly sympathize with our achings? We’ll never really be able to walk about in another person’s skin as Atticus Fitch suggested. Our experiences, our histories and capabilities are far too diverse. When we are hurting, we have no ability to share the our precise pains. We can, however, receive the loving consolation of a family’s embrace.

In this way, as in so many others, Jack isn’t all that different than the rest of us. He wants us to feel what he’s feeling, but he settles for a whispered assurance that we see him. He wants somebody to understand him. But gracious as he is, he settles for me.

Doubled by Wonder

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Really, it was a small thing. Just a silly text message.

My son Jack, who has autism, is a child of routines. He wants to know what’s happening so he can know what’s happening next. Over the past month or so, he has added something to his Sunday routine. He’s started watching football games with me.

I’ve told the story many times of Jack’s birth and my expectations: how Sara went into labor right in the middle of the Super Bowl XL in 2006, and how I took it as an omen about our life together; how I thought he would share in my passions for sports, books, and deep discussions over strong coffee; and how those cliché fantasies imploded when Jack’s regression hit. Autism required me to re-calibrate all my visions of fatherhood. I eventually came to accept the fact that life with Jack would not include all the staples of my own family culture, but it took years to get there.

Then, on Sunday, I got a text from my daughter who had already come home from church with her brothers. “Jack’s asking for football,” she said.

Truly, it was a small thing.

But something else happened last weekend. Uncle George came to town for Thanksgiving, and he had big things to share.

I’ve told a little of George’s story before, too: how we had worked together for years with him and his precious wife Karen; how Karen beat cancer twice, but couldn’t beat it a third time. How we mourned with him, and drew closer.

Before Karen’s premature death (she was just thirty-three), the two of them had been traveling the country, planning and raising funds to start an AIDS orphanage in George’s homeland of Papua New Guinea. HIV had been ravaging his nation for years, and they wanted to do something about it. The two of them decided they would go together. It was a bold dream.

Then came the wheelchair, the seizure, the blurry days in intensive care, and she was gone.

It’s been eight years.

You would expect that the old dream must have lain dormant without Karen helping to carry it. And maybe it did for a time. But not for long.

On Sunday, the same morning I got the text message from my daughter, I watched my old friend George standing before hundreds of people, telling the tale of his young and growing ministry. It is happening. He is doing it. He told our congregation about the tragedies in Papua New Guinea–of families turning out their HIV positive daughters, and of scared teenage mothers selling their newborn children on the hospital steps. And he told us about the hope he’s planting right in the middle of the mess–of children rescued and mothers finding warm hands to care for them.

Here was the best part, though. While George talked, his new wife Crystal sat beside him. Their adopted baby–himself a child of an HIV positive birth mother–was laughing in her arms, and Karen’s own diamond sparkled boldly from her wedding ring. Theirs is a staggeringly beautiful tale. Both of them know they are living a redemption story. It’s one of the best I’ve ever heard. Not only was love and joy reborn in George’s heart, his dream, too, came back from the ashes.

As I watched my two friends on stage, I wondered whether any of our young, untested dreams are good for anything until they are first ruined. All of us have visions when we are young. We think we’ll sail with dragons and live in castles and save the world through our heroism. Then the harsh winter comes. The dark night steps on our souls, and we realize we’re not as strong as we expected to be.

And as devastating as that can be, I’ve also found hope in such breakings.

For it is right there, in the aftermath of a shattered vision, that God meets us again. There, we find the shards of stubbornness to accomplish real good in the world. When the flame is on the verge of burning itself out, we often find the enduring embers of faithfulness. Young dreams come and go, but the dream of one who hoped, then lost, then hoped again? There is power in that one. Not only is his resolve like steal, but his dream itself is better than it used to be.

Big redemption stories like George’s inspire me, even in the midst of my tiny, insignificant one.

When I came home on Sunday, I did what my son asked. I turned on the football game and stretched out on the couch. Then, Jack grabbed his blanket and curled up next to me. We stayed like that for hours. I sighed in gratitude.

G.K. Chesterton defined gratitude as “happiness doubled by wonder.” That’s what I feel this week. Doubled by wonders great and small. Bowled over by the generosity of heaven.

I have no idea if Jack understands sports, or if we will ever discuss the works of C.S. Lewis together. He doesn’t say anything when he watches football with me. He won’t cheer or boo, or comment on how great Tony Romo is in the booth. I used to think I wanted those things most of all, but that was the old, untested vision. That was before the breaking.

And maybe it’s all hindsight now, but I think this is what I was really dreaming for all along: to be next to my son; to pull him close and share the warm and sprawling stillness of family.

To find out more about George & Crystal’s ministry, watch this video, and visit iCare4U’s website.

(Special thanks to Tami Jenkins of Hot Flash Photography, as well as my kids Sam and Emily for the pics.)

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

A Letter to my Autistic Son on His 11th Birthday

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Dear Jack,

You told us something the other day, something that broke our hearts. Mom pulled out the paper and pencil and sat you down in your room. She asked you how you were feeling. You said “sad,” and that you didn’t want to go to school. She kept prodding you, and you said the word “awkward.” Then she helped you find more words: “Mater the Tow Truck.” You said you were awkward like Mater. Then, you did something you almost never do: you spoke a full, clear sentence out loud. You said, “Kids laugh at me.”

Moments like this make us sad because you are sad. They make us a little angry, because people should be more kind. And they make us hopeful too, because you were able to use your words in a very special kind of way, letting us know about a tender thing happening inside you. That is what we long for more than anything, son. We want to know what is happening deep inside you. And now that we know you are hurting, it brings us back to sadness.

I think I know why you feel awkward.

It’s because you have movies playing inside your head, and you can’t make them stop. You start reciting lines from the beginning of Cars 2, where Finn McMissile is on the boat. Then you continue on through Radiator Springs. We hear the voice of Larry the Cable Guy and Owen Wilson. We hear Weezer singing that old song, “You might Think I’m Foolish,” only it isn’t Weezer, it’s you. On a trip to Portland last month, I think you made it through the whole movie.

There is a word we use for this. We call it “scripting.” Lots of people with autism do it. And it’s okay. It really is. We like it, because you can make your voice sound like the characters you are quoting and it makes us smile.

But I know, sometimes it can be embarrassing because not everybody knows you, and not everybody likes it. Sometimes they get irritated with you. Sometimes they laugh. They don’t understand how those predictable movie quotes help you to calm down in such a scary, unpredictable world. They just think you’re talking to yourself, and they can’t tell what you’re saying.

They don’t know you.

They don’t know how gentle you are when the little babies come over. They haven’t seen you bring a tissue to a crying little girl. They don’t know how much you get distressed when your brother gets hurt, or how you smile big when someone in your family comes back after being gone a few days. They don’t know that you love dance parties, or that you carry the electric salt shaker all around the house in case a waffle shows up.

No. They don’t know you, son.

But here’s the thing: there are many of us who do know you, and in our opinion, you are easily one of the top ten eleven year olds that ever was. Your heart is kind, your smile is infectious, and your Timon and Pumba impressions are straight fire. What’s more? You work so hard to communicate with us. I know it’s not easy, but you don’t ever quit.

When you let us into your world like you did on Friday, you know what it does? It actually makes you stronger. I know, that sounds silly, but it’s true. When you tell us how you hurt, it means you don’t have to hurt alone anymore. It lets us come close to you, to hug you, to cry with you, and to help you carry those heavy feelings that weigh you down. And then, we get to remind you how valuable you are, for you bear the image of God himself, and nothing—-neither seizures nor scripting nor children who laugh—-will ever separate you from His affection or ours. You are our son. Our delight.

I wish I could say life will get easier as you grow up. It won’t. Growing up means there will be more hard mornings, more mean kids, and more afternoons where your head aches because your little brother is screaming about absolutely nothing. While I can’t protect you from things that make you cry, I can promise you that you won’t have to cry by yourself. We will go through it all together, and we’ll make it, because that’s what families do. They hold each other, then they turn on Cars 2 music and dance around the living room until the laughter comes back.

Today, as you turn eleven, I want to ask you if you will let us in even more. We count it a privilege to share all the happy scenes with you, and to help you shoulder the sad ones. Indeed, it is our joy.

Happy birthday, son. I am so proud of you. We all are.

Dad



Images graciously provided by Anne Nunn Photographers. You really should go like Anne’s page.

Click here to read the next birthday letter

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

To Be Satisfied by Wonder

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It’s not supposed to be snowing. Not like this. And yet here we are at the base of Oregon’s mild Willamette Valley, with windfalls of white drifting down like cotton silver dollars. My boys are behind me in a sled we thought we bought for the mountain pass, and I am pulling them down the middle of the street over four inches of slick powder. It crunches under my feet.

“You’re a reindeer, daddy!” my five-year-old hollers before descending into calls of ” Ho, ho, ho! Merry Christmas!” It’s January.

The ever-thoughtful and poetic Timothy Willard posted this quote today:

I read Tim’s words, and I thought about how Jack, my autistic son, reacts to surprises not with words but with his whole body: the snow comes and his eyes widen, his muscles tighten, and he starts to jump in place, flappers ablaze. I thought about how special needs parents must also learn to savor God’s little surprises lest we starve for the lack of big ones.

Last night we had dinner at our friends’ house. The younger boys all retreated to watch Star Wars together while Jack sat with us adults, waiting for us to finish talking. He was waiting for a while, though. The four of us can talk…

After ninety minutes or so, he had had enough. He touched Sara’s chin. “Smart Writer one?” he asked. He was referring to the electronic toy he prizes so much that he can’t bear to bring it with him anywhere because he’s too afraid of losing it.

Sara smiled. The boy was being so patient. “First friends, then home and Smart Writer one.”

That mollified him. Our conversation resumed. Thirty seconds later, though, he was tipping his ear to Sara’s lips, wanting whispered reassurance that we hadn’t forgotten his request.

She complied in a hushed tone: “First friends, then home and Smart Writer one.”

He relaxed again, then he disappeared, and the four adults returned to our conversation. We talked of God and growth, and how grace has a way of covering all our arrogant tendencies, all our insecurities, all our broken places, of which we had many. Grace, like a white blanket of valley snow.

A few minutes later, Jack was back, but this time it was different. The boy had taken the initiative to put his coat on–something he never does without parental initiation. Then, he took his mother’s hand, turned it toward our hosts, and made it wave goodbye.

We all four fell into laughter. Our boy had made his point abundantly clear. We crave communication, and this was the epitome of clear communication; a small burst of joy to nourish our souls just a little bit more. It wasn’t a nine-course breakthrough, but it was the kind of wonder-food I’m learning to savor.

And here we are today, sliding around the neighborhood on a sheet of sheer white magic. I tow my sons between laughing houses where slumber parties become snow-ball fights, and wannabe photographers snap pictures of the strange, empty streets. And all of it is as beautiful as the new year itself; a frozen coat to cover our muddy tracks of regret. Sins like scarlet, grace like snow.

I hear my sons giggling behind me, and I’m singing along with Johnnyswim as they croon,

“I don’t know what’s coming…
I don’t know what’s coming…
I don’t know what’s coming,
but I know it’s gonna be good.”

Photos by my daughter Jenna, our friend Bethany, and my wife Sara, in that order.

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.

lifeanimated

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.

jackatcrater

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

well-done

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?

hague-5564bw

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.

brothers

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.

stuart_meme

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).

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

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

An Ode to Stubborn Optimists (And One in Particular)

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Dear Madame Optimist,

In darker days like these, when the screams, the tantrums and the safety helmets are close by, I wonder whether you will change your mind about our boy’s potential. I pray you won’t. You have this abounding faith in him that I envy, even in my doubts. You hear him mimic Nemo, and you think it means he feels lost. He hits his head and stomps, and you assume he doesn’t like our topic of conversation. He flaps his socks in the general direction of a tree, and you explain it’s because that tree reminds him of one he used to see before we moved here. Before all of this. When we still thought we were a normal family.

You know how kids stand against the wall for a height measurement, and then want to do it again the very next day? It never fails. They always think they are taller than yesterday. Every time. It could be the shoes, or the angle of the pencil, but they will claim a new centimeter.

This, I would wager, is how that particularly difficult person sees him right now (and you know of whom I speak). And if I am honest with myself, this is how I see you when I let my guard down. The realists (don’t dare call us “pessimists”) surrounding our boy bite our tongues and hang our heads. We see the wall and sigh, for all the pencil marks show up in the same vicinity.

It’s not that we doubt you. We just know how unreliable measurements can be.

Especially when those measurements concern him. A hundred times over, we have watched him progress and then regress, charge and then fall back, climb and then slide down. And so we hesitate to “go all in” on his progress.

But this is supposed to be about you, not us. About how you seem like you’re in denial sometimes. About how you need a teaspoon of tweaked expectations. About how we, the “properly adjusted” ones, are concerned that you are setting yourself–and all of us–up for further disappointment. Because let me tell you something, my love: belief is not as easy for all of us as it appears to be for you. Some days, it feels impossible. The truth is, many skeptics actually want faith. They would believe if only they could conjure up the courage. And on bad days, even after all the lessons I’ve learned being his father and your mate, I still feel a coward.

Forgive me. Forgive me.

You married the man who babbled, “I do believe. Help my unbelief.”

And that is why I need you. That is why we all need you. You are not the child with her heels against the wall; you are the loud cheerleading grownup. You swoop in and holler, “you HAVE grown!” We need you because you are well aware of the padded socks and the angle of the pencil, and yet you still see progress. We need you because, at the end of the day, you are exactly right: the child is taller today, if only by a hair.

My dear Lady, I am sorry I have trouble seeing in tiny increments. I read stories aloud but I miss “the little words,” as you are fond of saying. The forest is clear, but trees are all a blur. And I want to see them. I need you to keep pushing until I do see them. Until I live and love like Paul prescribed: hoping and believing all things. Because that kind of love, he assures me, never fails.

Give me time. Give all of us time.

I am only a couple of steps behind you now. I know the tantrums will subside. The safety helmet will return to attic storage. Our boy will grow. He is growing.

And before long, everyone will celebrate that fact.

Because even the “realists” around you, in our deepest places, understand that your way of seeing is not only nobler than ours, but lovelier and wiser as well.

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.

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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.

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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!