Wild Wings and the Gift of Presence

It’s the end of Autism Awareness month, and I want to tell you something I’ve learned recently from my son Jack, who was diagnosed at age 3 and is now 17. Jack has signisficant trouble communicating. Functionally, he is considered to be “non-verbal.” He speaks very little to us, and not at all to anyone else. And while he can read and type on his device, he hardly ever does so. His thoughts and feelings, dreams and pains, remain mostly out of reach.

This was excruciating in the early days, and I’ll be honest, it’s still hard for me sometimes. Maybe that’s because I love words. I love what you can do with them, how you can shape them to build stories, to leave impressions, to make people cry. A teacher once told me that language was God’s greatest gift to us since it is the very foundation of relationships. Without language, how can you really know a person? That idea stuck with me. I used to pray, “God, give Jack some form of language. I just want to know my son!”

Two weeks ago, my perspective shifted. Jack and I found ourselves in town together on a Friday afternoon with ninety minutes to kill. Normally, we’d have gone to see a movie, but there wasn’t enough time. I asked him if he wanted to go on a walk by the river. He mumbled something non-committal. It sounded like a yes, but it didn’t look like a yes.

Then, I realized we were only a half mile away from Buffalo Wild Wings. If I was with a friend, I thought, that is where we would go. We would order a beer and a basket of wings, and we’d watch sports on one of the many massive TV screens. I can’t explain why, but this felt like something I had to do with my son right then. It felt important. I had a rush of urgency that said, “Jack is getting older. This is no time for MacDonalds. We have to go to B-Dubs!”

The restaurant was mostly empty since there were no live games at that time of day. We sat down at a quiet table and the waitress came. Jack didn’t tell me what he wanted to eat or drink, but he didn’t need to. I’m his dad. I know won’t eat chicken wings, and probably wouldn’t fancy a beer, but boy does he love him some french fries and Sierra Mist. So that’s what I ordered.

I wanted to make our time special. I wanted to tell him how happy I was to be there with him; how I was proud of the young man he was becoming. But I didn’t, because I knew words would only frustrate him and probably spoil the moment.

So, for the next hour, we sat together wordlessly, sharing two baskets of fries. Jack blasted Disney music into big blue headphones and flapped two lanyards in front of his laminated picture—the one he carries in a protective folder. I sat with my IPA and my four versions of Sports Center. The sound wasn’t on, but I was okay with that. I was okay with the silence.

That’s not something I could have said before, but it’s true now. I am okay with the silence. Not all the time, but most of the time.

When I realized that simple fact, I remembered what my old teacher had said about the foundation of relationships, and I decided he was wrong. Language is one of God’s greatest gifts, to be sure. But there’s something else that comes first: Presence. Presence comes before language. Presence is the real foundation of relationships.

And this is what I want you to know if you have a loved one who struggles to communicate like my son does: your presence is invaluable. You must never consider it a small thing or underestimate its potency. Yes, I know words are important. I know communication is essential for a person to thrive in this cold, uncaring world. I’m not suggesting you stop working toward those goals. We haven’t stopped, and we won’t stop. But if progress is slow like ours is—even if words never come in the end—your greatest gift is this: you’re still there. You continue to show up. You figure out the songs they love. You order the fries. And you sit and share a long, extended moment. You share it all together.

Remember the laminated picture Jack carries? Well, it’s a picture of a television screen. An early 2000s Sharp Aquos TV. He used to watch all his movies on one of those. We have a Sony now, but the boy remembers that old model with real fondness. He carries the picture with him everywhere he goes. I don’t understand it, but the picture is important to him, so we respect it. Anyway, while he was staring at his Sharp Aquos that day, it occurred to me that we were surrounded by dozens of TV screens.

“Jack, check it out,” I said, gently tugging on his headphones and motioning to one of the monitors. “That’s not a Sharp TV, but an LG. And there’s another one. See that? LG. And another one. LG.”

A half smile crept up on the left side of his face as we studied the rest of the screens around the restaurant, comparing them with his picture. In his smile, I could see the truth: this son of mine understands us. This day. This rite of passage. He gets this connection we’ve built—this way of being without saying. There’s so much saying nowadays. So many words. Yes, I love words, but there’s real beauty in shutting them down sometimes. When we embrace silence, we don’t just give a gift to those who struggle to speak, we receive a gift too: the gift of THEIR presence.

I am thankful for my son’s generosity that day. And I look forward to spending another quiet afternoon with him at our new favorite hangout.

Autism Awareness and The Keeper of the List

Today is Autism Awareness Day. Can I tell you a story about being an autism dad?

It happened four years ago. My son Jack, who is autistic and doesn’t speak, was twelve at the time, and his neurotypical brothers were nine and six. The three of them share a bedroom, but Jack was going through a rough patch. He was having huge meltdowns every night. The panicked screaming would go on for hours. We tried everything, but we couldn’t figure out what to do. After weeks of this, the whole family was worn down.

There was only one thing that would ever make the screaming stop: we had to recite a list of his favorite movies in the order in which they appeared on his iTunes library. It went something like this.

“Shhh… One, Good Dinosaur. Two, Dragon One. Three, Dragon Two. Four, Inside Out,” etc. I think it went up to fourteen. My oldest daughter had discovered this remedy one night, and it worked like pure magic. But after thousands recitations (you think I’m exaggerating, don’t you…), the cure had become the new addiction. He became dependent on the list. It would calm him for ten seconds, and then he would start in again with the crying.

What was wrong? We didn’t know. He couldn’t tell us. That’s the hardest part of parenting a child with severe communication difficulties. When he’s hurting like that, or when he’s so scared his teeth literally chatter, we have no idea how to make it better.

So there we were… lying next to him in the wee hours, repeating the list again and again, hoping that this time, when we got to fourteen, we’d get twenty seconds of quiet. And maybe twenty-five seconds next time.

But remember, he was sharing a room with his brothers, too. They were going to school every morning with messy hair and bloodshot eyes. They were more wrung out than we were.

One night, when it was becoming clear that this spell wasn’t going to break anytime soon, we drug Sam and Nathan’s bedding across the house to their sister’s room. Sam, the nine year old, was furious. And that’s a big deal, because Sam never gets mad. He might be the most compliant, good-natured kid I’ve ever met.

“Buddy, you are so tired,” I told him. “You have to sleep.”

His defiance came in a quivering voice, “What if Jack needs me?”

You see, friend, in the wee hours, Sam had become the keeper of the list. The whisperer of peace: “One, Good Dinosaur… Two, Dragon One… Three, Dragon Two…” How many hours he did this, I’ll never know.

So I spread out his blanket on the floor, said goodnight, and closed his sister’s door.

A few minutes later, it happened: the thing we’ll never forget.

My daughter’s door opened, and there was Sam, standing with his pillow under his arm, and his blanket on his shoulder. He was glaring at me with huge tears in his eyes. His chin trembled violently. Then, he proceeded to march all the way across the room, right in front of the television. His eyes never left mine until until he rounded the corner and disappeared back into his bedroom, where his big brother was still crying.

* * *

Autism means many things to many families. To ours, it’s meant banding together in surprising ways. It’s meant digging deep to find connection. It’s meant figuring out together what will make Jack laugh, or what will help him relax and go to sleep. Autism means sometimes dragging your bedding across the house.

Together, we have learned how to speak a new language, not based on grammar and syntax, but on grins and silly dance moves.

Our story is at once heavy and beautiful. It might always be that way, and I’m okay with that. I used to lament Jack’s condition. And I’ll be honest, some days, I still struggle.

But today, I look at my lanky, whiskered sixteen year old who can’t speak but occasionally sends a text message, and I see all the beauty he has brought out of us. I see all the joy he pours back in. He’s a beautiful boy, And I cannot tell you how grateful I am for him. I’m grateful for his brothers and sisters, too, each of whom understands empathy at a far deeper level than I ever had to as a kid.

* * *

I took a long walk with Sam the next morning. We didn’t talk much about rules or punishments. There was no need for any of that. Mostly, we talked about responsibility and rest. Because it doesn’t matter who we’re trying to love, or what diagnosis they might have, love requires effort. And if we’re loving for the long haul, we have to find refreshment for our souls, even as we pursue the same thing for our siblings.

In the end, that’s what autism awareness is really about for us: learning what it means to love our brothers, even as we learn to love ourselves.

“Sam,” I told him that morning, “I’ve never been so proud of your disobedience.”

It’s still true.

______________________

Photo from last summer at the Oregon coast. My shaggy boys from left to right: Nathan (now 10), Sam (13), and Jack (16). I love these young men.

A Letter to My Autistic Son on his 16th Birthday

Dear Jack,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dad

The Porcelain Light of Promise

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)

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

Abuse, Betrayal, and the Perils of Pedestals

One of my heroes died back in May. He died again last week.

I never met Ravi Zacharias, but he has been a giant to me since in my earliest years of ministry. I used to do the dishes with him back when podcasts were just becoming a thing. I’ve heard many preachers at the top of their game, but never one who could make the truth so beautiful. His sermons, while vivid and forceful, were shot through with the poetry of grace. Everything about him, from his rich accent, to his perfect diction, to his surgical use of quotes, made me want to be be a better preacher. In fact, sometimes when I write, I still hear his voice narrating my prose.

This past week, then, has been a bit of a gut-punch. An independent investigation confirmed that the man in the podcast was not the man I believed him to be. Suffice it to say that Ravi, like so many before him, abused his position by abusing vulnerable women who trusted him like the rest of us did.

There is nothing new here, of course, and that’s part of the tragedy. Recent flameouts by Christian leaders have jump-started new discussions on sexual abuse, local accountability, the responsibility of institutions, and the rancid nature of Christian celebrity. They are hard discussions to have, especially for those of us who are still feeling sick to our stomachs, but they are essential. Men need integrity. Ministries need transparency. Victims need advocacy. And preachers of the gospel need their feet held to the ground.

It is only this last point that I feel qualified to speak to. I’m only an associate pastor of a mid-sized church in small town Oregon—I’m not even the lead guy—but I’ve felt the pull of the pedestal, too. We all have.

I put a book out a couple of years ago, and I had two concerns that kept me up at night. First, I was worried what might happen if the book bombed. I didn’t want it to crush me. After all, my identity was supposed to be rooted in Christ, not in book sales or Amazon reviews. I didn’t want that to change.

I was also worried about the opposite scenario: what would happen if my book became a huge success? What if it became a bestseller, and people treated me like a rockstar? More to the point, what if I started to agree with their accolades? I knew that was a less likely scenario (there are only so many bestsellers, after all) but it was the more perilous one, too. After all, the greatest stories of human implosion never begin with shady massage parlors or cheap hotel rooms, but with feeble men who believe their own press. That progression is as clichéd as corruption itself. We’ve seen it happen a hundred million times, and yet it still surprises us when the bloated giants collapse beneath the weight of their own heads. I didn’t want to fall victim to that same lunacy.

So, in the months before my book release, I decided to bring my fear to the light. I sought out the wisdom of a spiritual director. I found solace with him, and I found comfort in the prayers of our church elders. But you know where I found safety? In the cackling of my closest friends, who mocked me incessantly with the precious love of Jesus. I’m serious.

“What, you think we would ever let you believe you’re something special?” They laughed. “Uhhh, no. Remember, we actually know who you really are.” And I almost wept with relief, because it was true. I knew as long as I kept them in the center of my life, I would be safe. (It turns out I need not have worried. The book didn’t sell particularly well.)

My boss and senior pastor, Joshua Rivas, was one of those people. He likes to say, “You’re never as bad as your worst critics, and you’re never as good as your biggest fans.” He’s right, too. True validation doesn’t come from crowds. It comes from those who lift you up when you’re low, and who take you to task when you get too big for your britches. “Faithful are the wounds of a friend.”

This leads me back to Ravi Zacharias. I don’t think he had anyone in his life who did this. And that’s a shame, because if the reports are as bleak as they seem, Ravi didn’t just have old skeletons in his closet, he carried them in his suitcase. He wasn’t a man who went off the rails one time years ago; he was actively living a different story than he preached, leaving a trail of damaged lives in his wake. All this despite having countless colleagues, a board of directors, and a ministry network like few people in all Christendom. By all indications, none of these people was permitted to wound him.

Or maybe they tried, but it was too late. Maybe he was already out of reach on his pedestal. Maybe the adulation of his fans—people like me—had already worked it’s terrible magic.

God help me, but maybe I was part of the problem.

Can I ask a favor of you, dear reader, on behalf of other preachers and writers who have no desire to wreck their lives or the lives of the innocents? Who desire to be faithful in every way to the call of Christ? While we’re figuring out things like organizational accountability and transparency, there is a small thing you can do as we move forward: you can help us by refusing to build us pedestals.

I know, sometimes we all think we want to balance atop such stages, but they are too high, and we know it. We have been tasked with teaching worship, not receiving it.

Please understand, I’m not asking you to hold us to a lower standard. God Himself demands a lot of us. If we’re going to teach a truth, we’d better at least be doing our best to live it. And if we fall, the guilt is ours and ours alone.

Still, the pull of celebrity is a poisonous thing, and not at all suited to ministers of the gospel. We are most settled—most grounded and secure and, well, safe—when we are sharing life not with followers and fans who don’t question us, but with brothers and sisters who do; with friends who know all our secrets, and love us enough to wound us when they must.

In the meantime, what do I do with all the things I learned from Ravi? He introduced me to the maxims of Chesterton, and the pummeling prose of Muggeridge. He taught me the power of story, the magic of metaphor, and how to hold a long “S” at the end of my money quotes. But more than all that, he showed me how to embrace mystery and wonder in the good news of Jesus Christ.

What am I to do with all that? And what am I to do with his narrative voice, which still plays in my mind when my fingers are hammering out something good?

I don’t know the answer. But I know the power of redemption is great. While the man I revered will doubtless receive a hefty judgment for his crimes, his words themselves might still produce fruit in hungry souls. So maybe it’s okay if I still hear him.

For now, all I can do is learn from the tragedy of my distant mentor; to write and speak with urgency, but without ambition, and to keep my feet planted in the sacred soil of glorious community.

The Things We’re Waiting For

I almost lost my dad last week. Covid-19 knocked over his door and pushed him into the I.C.U. He was alone in there for days and days. Even my mom, his wife of fifty-one years, could not be with him.

I think of my dad and all those like him, forced into cruel medicinal isolation for their own lives’ sake. They lie face up in their confusion, tangled in tubes and ominous beeping. They have to work, now, even for their breath—something that’s always been free to them before. Their loved are kept away, and even the empathy of nurses, the fallback comfort of the afflicted, is hidden from them behind sterile masks. How many thousands have slipped away in that lonely anguish?

I think of all this, and shake my head. Because it’s not supposed to be this way. And one day, it won’t.

***

We need to get one thing straight: Advent is not Christmas. Christmas is about celebration. Advent is about waiting for that celebration.

Every December, Christians of every shade get busy waiting. We do it by lighting candles and reflecting on the meaning of hope. We put ourselves in the shoes of two ancient women: Mary and Elizabeth, the unlikeliest mothers that ever were. Both women received a promise from upstairs, and both had to wait receive it. Their sons would turn the world on its head: John would prepare the way, and Jesus would open the gates of a kingdom with no limits.

So these two cousins, what did they do? They got busy waiting.

There’s a reason we call pregnant women “expectant.” I remember when Sara was pregnant with our oldest. I remember getting the nursery ready. The baby showers, the bassinet, the jogging stroller, and the teddy bears.

We got all ourselves ready, too. We read books, sought advice, and asked for grace. My dear wife was uncomfortable (duh), but to borrow a phrase I often hear women say of one another, she was also glowing.

Waiting is not a popular hobby. But when you’re expecting something wonderful, it takes the shape of joy.

You can choose to wait without expectation, of course, but it isn’t pretty. There’s a specific word we use in English for that kind of waiting. We call it loitering.

I remember how I used to loiter in Broadway Square Mall in Tyler, Texas. I didn’t shop. I didn’t have a plan. I would just go there with my friends and wait. For what? For nothing. I was just there, existing. I remember once, going to the music store with my cousin, and I passed some kid about my age. He spun around and yelled, “hey man, you’re walkin’ too close to me!” I didn’t turn around, so he said it again, only louder, and more Vanilla Ice-ish. I ignored him again.

That was the day I realized what a dismal place the mall was.

But this, I fear, is how too many of us roll. We loiter through life, breathing and out, waiting to die. We go to work every day and look forward to nothing except for maybe the weekends. Maybe there will be enough diversions to numb the longings buried in bellies. Maybe we can exist for long enough to find something like meaning. But until then, you can find us on a bench between the food court of presidential politics and the Sun Glasses Hut of Netflix.

But there is a better way.

I am waiting for something very specific. You can call me a fool, I don’t care, because I’ve made up my mind: I am waiting for the return of the one who was born to Mary in a manger. She waited for his first advent; his arrival. I await the second. This is the truth that defines me most in this life.

Why do I wait for Him? Because when He comes, I believe He will bring with Him the restoration of all things. All the broken places will be made new.

This, I believe, is the reason we have all these longings in the first place. As Mr. Lewis pointed out, we don’t ache for things that aren’t real. We don’t desire a thing unless that thing actually exists. So why would our stubborn hearts go on like they do, continuing to cry out for a relief to all suffering, unless that relief is coming? Why do we desire justice? Why peace? Why forgiveness? Why connection? Why do we long to be fully known and fully loved?

It’s because those things are on the way. Christ has come, and He’s coming again.

Today, we work toward healing in all it’s forms, because that’s what He will do. But we will always come to the end to our efforts. We are human. Limited.

When Christ returns, He will finish it all. We won’t have to rely on vaccines and ventilators because viruses will be eradicated. Disease will be undone. Pandemics will be forgotten. Our father will never again ache alone in houses of suffering. The pain, the terror, the isolation… all of it will be a distant dream.

***

My dad didn’t die last week. He’s home resting now with my mom. I talked to him yesterday, and he’s giddy like Lazarus, grateful for the gift of every new breath. I heard him laugh and he sounded like Santa Claus, the man who he’s always mistaken for, and a tear came to my eye.

Dad’s rally is not the final restoration, I know. We are the lucky ones. One day, I will still have to let go of him, just as thousands have let go of their fathers these wretched months. But his turnaround, like every temporal healing, is a foretaste of what is to come, when all will be made new.

I ache for that reality, but I ache with joy. I am expectant, with my friends, Mary and Elizabeth, and with all those who call upon the name of Christ this Advent season. Together, we close our eyes and pray the prayer of Julian of Norwich: “All shall be well, and all shall be well, and all manner of things shall be well.

(I preached on this at my church last Sunday, and thought I’d post it here for those who are interested. That interpreter, by the way, is my wife, Sara. She’s ridiculously good. Just watch her on the mall story…)

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

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

Wet-Socked and World-Weary

It’s a drizzly morning, and Jack is taking a walk with me. He had a rough night, which means Sara and I had a rough night, and now we’re trying to shake it off by meandering the streets of our wet little town before it wakes. A pair of exercising moms offer us a good morning, and I wonder if they can tell my boy is different. There is much about him that sticks out. Some of his uniqueness he owes to the autism spectrum. But some of the other stuff—the melancholy aimlessness on this morning walk, or the way he squints up at the rain—he gets from me.


It’s been two months since the world shut down, and we’re both tired. Jack’s tired of Zoom therapies and pixelated faces, and I’m about done with the games the world is playing—the tug-o-war over numbers and and courses of action. I’m tired of accusations and return accusations; of conspiracies and counter-conspiracies; of punches thrown and prophecies proclaimed and the near total absence of humility. If the world had broken in an off year, there might have been more good-faith arguments about how best to proceed. But since it’s an election year, every course of action is said to be suspect.


All of it is soaking my shoes, so I walk slowly.


How are we supposed to proceed? To shelter or to open? To comply or to defy? To mask up or to go plain faced and unafraid? The defiant ones don’t want to admit it, but they’re just as scared as the rest of us. Everyone is hyperventilating. We are afraid of COVID or of collapse. Choose ye this day whom ye will fear: the bodybags or the breadlines.


And I don’t claim to be above it. I think both threats are real. But you know what I’m most afraid of? Not of the coronavirus or of a great depression or that we are so plainly being ripped apart by mutual suspicion and resentment. No, my biggest fear is that we don’t care we’re being ripped apart. I fear that we’re okay with it. That we’re ready to rush in and pick up our side of the rope; to drag our neighbors into muddy agendas we barely understand.


The beloved disciple said that perfect love casts out fear. I don’t doubt him, but I want to ask him, “When? How long does it take for perfect love to work its magic?” Because it’s been two months, and we’re barely shuffling along, wet-socked and world weary, accumulating new resentments by the hour. Perhaps we need more time. Or a better sort of love.


We pass the boy’s old elementary school, and I can see he’s sad. I’m sad, too. I tell God so. I squint up at the rain and wonder whether people know it when they see me? Can they sense my heaviness? Can they tell something isn’t quite right?


Jack crosses the street with me, then changes his mind. He stops on the sidewalk–frozen in indecision, until I offer him my elbow. Then, he does something he’s done ten thousand times before: he slides his fingers around my arm. He doesn’t speak; the gesture does it for him. It says he knows he needs me. It says he will continue to walk with me, even in the rain. It says, rather imperfectly, that he trusts me. That he loves me.


We shuffle forward together, Jack and I. He follows my lead, putting one foot in front of the next until we reach home, a little less afraid.

The Aching Joy Podcast

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

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)

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

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.

For Who She Is Right Now

She used to stand on top of a box, frozen in the rapturous potential of her wardrobe. I don’t know how we accumulated so many princess dresses, but she loved them all, and choosing one took time. At first I would hurry her. Getting dressed shouldn’t take all day, I was sure of it. But over time, I learned to give her space to make her decision. She would emerge twenty minutes with a tiara, a vain smile, and a dress of sky-blue silk.

And an hour later, she’d be wearing a yellow one.

It was a hilarious, adorable phase. I didn’t want it to end. But as every Cinderella knows, the magic only lasts so long. Soon, she discovered dirt and bugs and adventures. When she was five, she argued with her buddy Natiq about their shared future. He wanted to be a fireman, but she wanted to be fashionable. They decided on a compromise: they would be firemen who wore pink.

Jenna turns sixteen today, and I can’t help but think of all those costumes she used to wear. All of us try on costumes as we grow, I think. We adopt new postures, new moods, new outlooks. We look for original preferences. We seek personas that will make us stand out, or blend in. We climb and climb in search of that elusive identity that will last not just for today, but for always.

Someday… Someday we’ll learn who we really are.

We take personality tests, and discover we are a list of letters and traits and strange descriptors. We are INTP with top strengths of ideation and adaptability; we are fours with a five wing, who speak love with quality time. We are choleric sanguins with a dash of steadiness.

At least, we are those things until tomorrow, when we retake the tests without being so hangry.

Someday… Someday we’ll learn who we really are.

Growing up is hard enough when you think there’s a finish line. But I am forty, and I still haven’t arrived. My floor is littered with the worn out costumes; the embarrassing remnants of images attempted and discarded.

But what if there is no finish line to get to? What if there is no plateau? Change is already woven into our world; what if it’s woven into ourselves as well? If that’s true, we owe ourselves some grace on the quest toward self-discovery. And we owe our children even more.

I look at my daughter today, and I wonder if she would have ever become who she is today–the coffee-sipping artist; the patient, protective, sister; the theater nerd who just wants to know everybody’s having a good time–if not for other clothes she tried on in her journey. And that makes me thankful for each one of them: the princess phase, the fireman phase, even the phase where she thought she loved professional golfer Phil Mickelson! Every era brought its own charm; its own delight.

In five years, will she still love theater? Will she still be an ardent student of Michael Scott and Dwight K. Schrute? Will she retain her irrepressible quirkiness?

Perhaps she won’t. Maybe one day, I’ll drop a quote from The Office, and she won’t remember it. Maybe she’ll put down her paint brush. Maybe she’ll pass on the espresso.

If that happens, I’ll miss these golden days in the same way I miss the princess dresses.

But I don’t ever want to mourn them. No. I’d rather give her time to try on the new dress. I’d rather live with her in the middle of those changes. I’d rather enjoy the ride. Because we only get one chance to watch our children grow.

So today, I watch her. She is tall and lovely and full of winsome grace. For some reason, God has placed her in my charge for just a little while longer. I’ll continue to watch her and love her not only for who she is becoming, but for who she is right now.

When Joy Can Breathe Again

Can I tell you of our last adventure with Janae? It was Christmas time. She gave us all winter hats and a night at the Oregon Gardens. The place was a yuletide forest wonderland, complete with ice skating, cider-kiosks, and a hundred zillion lights. She was giddy when we unwrapped the tickets.

I told you already how she loved to give perfect presents. Well, with this one, she struck gold. The snow-less sledding was a massive hit with our kids, especially Jack. As a general rule, our autistic son avoids crowds as much as he does new experiences. Not that night. The boy laughed and spun and slid and flew down the long ramp with unbridled exhilaration. His auntie whooped and hollered for him. I’m not sure I ever saw her so proud of herself.

At the end of the evening, we sat in the restaurant at the lodge and ate dinner around a table, and drank drinks near the fireplace. It did not occur to me until later how significant that meal was. Truly, because of Jack’s constant anxiety, we never go to actual restaurants as a family. Never. It’s been at least five years since we’ve even attempted it. And Janae made it happen.

We decided we would go again the next year. It would be a new Christmas tradition. Janae’s eyes beamed when she proposed it, and there was hearty agreement.

I doubt we will follow through now that she’s gone, though. The sting would be too great.

Nevertheless, that evening remains a source of gladness in my mourning; a full sand dollar memory on the shores of grief. It lasted maybe three hours, and then it was over forever, but I cannot deny that it happened once, and that it was wonderful. I can drown the memory in tears if I want. I can write poems about the cruelty of a God who strangle our merriment. But I cannot kill the happiness of the memory itself.

And here we find the tug-o-war between grief and gratitude; mourning and thanks. The rope is laced with irony, for those who shake the heavens with their complaints about not having enough time are, themselves, tacitly acknowledging the truth about time itself: that it is a gift no matter the increment. We who cry over loved ones “taken away” are presupposing that someone gave them to us in the first place.

Janae was in our lives for sixteen years. Sixteen. And in those years, she brought to my family a brand of lavish affection we didn’t know existed. She was both the children’s godmother and their fairy godmother, granting movie nights and birthday wishes with a winsome wave of her wand. And to Sara and I, she gave a loyalty and presence we never expected and did nothing to deserve.

Sixteen years. Sixteen of her forty-two years, she spent with us.

I’ve been tugging at the rope from both ends these last two months. Because mourning is a disorienting affair. On the one hand, death is still a brigand not made for this world. When he strikes, it is only right and good that we weep and mourn for the ones we lost; for the gifts gone too soon.

But on the other hand, if we mourn that way—if we weep at all over the lives cut short—we must at least acknowledge the magic of our memories; the miracle of life itself. Isn’t that only right? For even a gift cut short is, first, a gift.

Some days, I am still tempted to get stuck in deep despair; to let the sad memories grow sadder still, and the happy ones sour to the point of pain. This kind of thing is like gravity to a melancholy soul like mine. Sorrow slouches towards petulance, where nothing is ever enough. No amount of years will ever suffice.

But if we give ourselves over to those shadows, what then? The only real gifts would be the ones that go on forever and ever till the end of time. And even at that point, what would we say? Would we not raise our fists that time itself has an end?

How sad the Author of life must be to hear us babble on and on about the unfairness of His world. He hangs a painting in our lives, and all we do is rage about the frame. We want canvases without limit—paintings that stretch out and cover the wall, and wrap around our existence until nothing exists but easy beauty and the comfort of constancy. Why can’t we see that the frame is part of the painting, and the limit a part of the gift?

Can you tell, friend, that I am speaking to my own soul with these words? Because sixteen years is too short, but it is a long time, too. And I have come to see one thing quite clearly in my own journeys through aching joy: the best way to push back against the petulant slide of despair is by giving thanks.

And I know, it isn’t easy. Not while the pain is so fresh. Don’t worry, friend, for God is patient. He can handle our tears. He can handle our questions. He can even handle our limp flashes of rage. It takes time for hearts to mend.

We will mend, though. I promise you, we will. And that journey begins when we recall, even through our tears, that every good and perfect gift comes from above. Joy begins to breathe again when I remember to bow my head and say, “Thank you, Lord, for the gift of my sister.”

 

When Grief Meanders: A Lament for My Sister

When Janae got embarrassed, things got funny. Like when she lived in the apartment above us, and she needed help with her luggage. I don’t remember where she was returning from–we were both working with a missions agency, and she  traveled often–but I remember it was a short trip. Far too short to necessitate a suitcase with the approximate weight of an upright piano. I laughed all the way up the stairs, making the usual comments about anvils or corpses, and she launched into her embarrassed defense.

“What? It’s not that heavy!” But it was, and she knew it was, and the more red-faced she got, the more words came out. She needed those cute shoes for her green outfit, didn’t she? And what if got cold? She would need that thick coat if it got cold, and then she would need her boots! Janae’s packing tendencies were only matched by her blushing verbocity: less was never more; only more was more.

That was my sister. We had different parents, but for the past 16 years, Janae Alice McWilliams was a staple in the Hague household. She was a part of us. When we left Texas for California, we left together. When we migrated from California to Oregon, we migrated together. When we lost our dear Karen, we mourned together in the little house we shared for more than three years. She was my kids’ auntie and chief cheerleader; their personal, in-home Mary Poppins. She went to dance recitals and soccer games, and when Sara and I couldn’t make one of those events, we never worried too much. Janae could be there. That would be plenty for the kids.

But she can’t be there anymore. Janae left us five weeks ago. It was cancer. At her memorial, everyone talked about how extravagant she was in the way she loved people. With the possible exception of her mother, I think Sara and I received more of that extravagance than anyone else. It started the day Jenna was born, nearly 16 years ago. We were supposed to be moving into a new place that day when Sara’s water broke, and we had to abandon the moving team we had already assembled. Janae took charge of them all, so that when my wife and I came to our apartment with baby in arm, there were no boxes to unpack. Beds were set up, the crib assembled, and everything was in its place. Even our clock was on the wall. There was something about that clock. When we saw it, we both cried at the great gift our friend had given us.

That was when it began. That was when we knew she would be ours.

Janae’s over-the-top tendencies always drew a sharp contrast to my own absent-minded minimalism. Truly, she was my sister, but we could never have grown up in the same household. Her grand gestures always dwarfed my own feeble attempts at appreciation. She gave the best, most thoughtful birthday presents. I gave her gift cards. That kind of thing always embarrassed me, but how could I compete with her? How could anyone compete with her?

“JasonHague, are you at the office?” That’s what she called me. She rammed my name together until it was one syllable.

“Yeah, why?”

“Good. I have a surprise for you. I’ll be there in a minute.”

And then she’d come with a latte or a CD or a Toblerone, and I’d feel embarrassed again, because after so many years, the tally of gifts was heavily in her favor already.

I’m not sure she noticed, though, because really, she did this with everyone. She loved to figure out people’s favorite things so she could tell them, “I have a surprise for you.” When she gave the gift, she’d pounce on them with a gigantic hug (she is famous in seventeen nations for her hugs), and an exuberant monologue of unbridled encouragement would ensue.

That was my sister. She loved people with candy bars and wild words of praise; with long conversations, deep embraces, and clocks on the wall. She spoke all five love languages with a native accent.

My kids have learned much from her. “Miss Janae, you make my heart smile,” Sam would tell her as a four year old, because that’s the way she talked, and he wanted to speak her dialect. I tried it, too, now and again. She loved Cherry Pepsi, and when I dropped by her office, I’d occasionally bring her one.

“JasonHague, you’re just the best!” she would say, and pull me in. I’m not much of a hugger. Everyone knows that. She knew that, but she didn’t care. Because she could see through my relative minimalism. She knew I loved her back.

And now that she’s gone, that’s what I’m counting on. That she really knew. Because like all brothers and sisters, we butted heads all the time. We knew each other too well.

When I turned forty in November, my friends had one of those mandatory, “say something nice about Jason” circles, and she pounced.

“JasonHague, you are my favorite,” she said. “And that’s what I tell people: JasonHague is my favorite. But sometimes, he can be such a jackass!” We all fell apart laughing. It was perfect. But it also stung just a tad. Not because she was wrong; I know full well that I can be a jackass, and I didn’t mind her saying so. No, it stung because of where my mind flashed to; the times I hurt her like almost nobody else could. Like when I took her for granted, as if her die-hard devotion to me and my family was somehow pedestrian; as if it was a small thing to hear people gape at how much she loved us; as if her unassailable, self-sacrificial loyalty to the Hague clan was our right, and not her gift.

I still wince, even though I begged her forgiveness, and she gave it freely. I wince, because I fear she died with my small bruises still on her soul.

Last week, I was with a group of friends at the coast, trying to be social. It’s harder than normal. Everything is harder than normal right now. Janae’s health declined so rapidly that her death feels more like a sudden accident than a lost cancer battle. We didn’t have time to brace ourselves, and even a month later, the tears come suddenly and won’t stop. Even in the coffee shop where I write this right now, I can’t quite turn them off.

I said in my book that grief doesn’t walk in a straight line, but that it meanders. I’m now remembering how right I was. It doesn’t matter that I’ve been through this before. Mourning is still an expedition, and I’m not leading it.

On Saturday at midnight, I sat on a cliffside bench staring at the dark Pacific waves raging beneath me. The coast is usually my happiest, most peaceful place; the spot where words flow freely, and glimpses of God’s eternal presence come unbidden. But they didn’t come that night. Instead, my minimalism got the best of me. I didn’t even have a coat to shield me from the cold Oregon wind. In this way, like so many others, I was the opposite of Janae. I always try to stuff only the essentials in my backpack. It’s a matter of pride: I don’t need much. Less is more.

But sometimes less is just less. I had to wrap myself in a blanket from the house, because the world was cold, and I missed her.

God was up there, of course, hovering over the face of the waters, but I hadn’t packed any prayers for him. There was just not enough room in my bag. So I looked up at the clouds and said only one thing aloud: “Can you just sit with me tonight?” Because those were all the words I had. And I think He honored them.

“Love covers a multitude of sins,” St. Peter said. I believe him. I think God sees me down here in my brokenness, and sits with me in the silence. He sees my questions and brewing resentments, but He has enough love to cover it all. In my deepest places, I know His love is enough. I know His goodness is intact.

But does Peter’s statement extends beyond God alone? To Janae herself, I mean? I can only hope, because that’s all I have left. I can only hope that what she told me in the hospital was true: that I had helped to heal her heart. That sixteen years ago, she had needed a brother in her life, and God had given me to her. That I–that we–had been every bit the gift to her as she was to us.

 

Hope is all that’s left, because she’s gone now, and it’s too late for more Cherry Pepsi. It’s too late to double check whether I displayed enough of my overly-casual love to make her more or less forget my times of jackassery.

I know they say not to have regrets, but I have them. I think it’s okay to look back and wince every now and again; to hope that our love was wide enough, and to trust that even where it wore thin, things might still be okay. Because whether we pack heavy or pack light, this life is a temporary destination. Eventually, we will go home, and Someone else will have to carry us up the stairs. We will have to trust that His love is full enough to make up for all the places ours wore thin.

Every night at bedtime, Nathan, my seven year old, has been praying the same thing: “Jesus, please tell Miss Janae that we love her so, so, so, so, so, so much.” I don’t know if his theology checks out, but it’s a good prayer. And today, it is my prayer, too: that the one who loved with such extravagance might understand, today, how much we loved her, too.


This was our favorite Christmas moment. We got a kitten for our very own Miss Janae McWilliams, and her reaction was priceless. I mean, we knew she'd cry of course, but I'm certain it happened in world record time. She said I could share this because she's an excellent sport. Also, she wants the world to know she loves this kitty.

Posted by Jason Hague on Monday, December 31, 2018

(We took this video this past Christmas day. I’m so glad we did.)

An Open Letter to Fellow Pastors Concerning Special Needs Families

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.

A Letter to My Autistic Son on his Thirteenth Birthday

Dear Jack,

A week ago, you started sneaking the scissors into the living room. You’ve had two missions as far as we can tell. The first was to cut your own hair. We always liked it floppy, but mom caught you hacking custom alterations while standing in the middle of the floor. “I can help you,” she offered “Do you want it short?”

“SHORT!” You answered.

We had no idea.

Your second purpose for the blades seemed more urgent, though. You went to the bookshelves and took down one of the many screenshots from your digital movie library. These have been your favorite living room decorations for years now. You made the images yourself. You couldn’t choose the order in which the covers appeared on the AppleTV–iTunes does that by itself–but you could at least hide certain titles until the configuration satisfied you.

Anyway, you took one of those long-standing decorations, and you started to cut. At first, I wanted to take the scissors away for safety’s sake. But then I saw what you were working on. Your blade got close to the movie covers. Very close. You trimmed around each of them until you had eight perfect little rectangles. And that’s when I realized it. You were disassembling your digital movie shelves and reassembling them in a new order–one that you picked yourself.

I saw something of an artist’s defiance in your work, as if you were sick of the corporate man at Apple forcing your tastes into a corner. But more than that, I saw a child who wasn’t a child anymore. I saw a boy becoming a man, putting his mark on his environment.

Today, as you know, is special. It’s your birthday. You’re thirteen years old. And I know you hate being caught off guard, son, so I want to tell you a few things. The journey toward manhood isn’t easy. Things will start to be different, little by little. School will get harder. Your responsibilities will grow. The way the world sees you will change forever.

Most importantly, though, you will change. Not just your body and your voice, but your feelings, too. They will go up and down and left and right. Things you like and dislike will shift suddenly. You might even want to rearrange your movies in a different order every day, just because you feel like it. I want you to know there’s nothing weird about any of this. You belong here.

The other night, Emily, Sam and I were trying to get you to talk to us. “What’s your favorite animal, Jack? Monkeys or penguins?”

“PANDA!” you said.

Of course. You’ve been watching Kung Fu Panda 2 every day for the past six months. You love Po. So we laughed, but you weren’t being funny. “PO IS PURE AWESOMENESS!” you insisted, using one of your recent phrases. And we had to agree. Po is pure awesomeness. And so was your answer. “A or B,” we asked. And you answered, “C.”

You used to be content to consume life. Not anymore. Now, you want to have a hand in shaping it, like your own floppy head of hair.

Here’s what I need you to know, my boy: we welcome that shaping. We welcome your opinions, your creations, and all your imaginings. When we see you assert yourself, it fills us with joy.

Maybe you thought you needed to be timid before. Maybe you haven’t spoken up much because words are so hard for you. But we love your voice, son, even in all it’s silent variations. Your delights are our delights. When something makes you happy, we can’t help but be happy with you.

More to the point: this world of ours? It’s your world, too. We don’t want to shape it it without you. We need you, son. We need your eye, your smile, your keen and unusual sense of order. We need your pure sense of awesomeness.

I hope you’ll take our hands in this adventure. I hope you’ll grace us with your unique and fascinating perspective. Because we’re all walking a journey of discovery, and none of us were meant to walk it alone. You already know you need us. But I’m not sure you’ve ever realized how much we need you, too.

Happy Birthday, young man. I’m proud of you.

Dad


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

The Conquest of Casual Shame

It’s late January, and I just finished my morning walk. Early rising has always been hard for me, as it is for most. But I don’t hate mornings. If anything, I adore the pre-dawn stillness of the world. It’s a shame I don’t pursue it more often.

Wait — I just wrote that last sentence without thinking, and it’s an abomination. I’m not going to delete it, though, because it proves to the point I was intending to make in this post. You see, it truly was a beautiful morning–cool, dark, and blessedly dry. The three-quarter moon was drifting kite-like behind the frills of lacy clouds. I passed a friend on the road, wearing light-up blinking shoes, and it made me smile. I had my coffee, my warm jacket, and my headphones on. I listened to Exodus, and then talked to God over subtle, ambient post-rock music. It was perfect, as is the soaking calm of the living room where I now write.

But you saw what happened. Even before I started going on about the beauty of the morning, I couldn’t help but type that downer of a phrase, “it’s a shame I don’t pursue it more often.” (And seriously, I didn’t plan it for the sake of a blog post. My fingers did that on their own.)

I wish I could say this is rare for me, but it isn’t. I catch myself making these statements all the time. When I find a new band, a great show, an awesome pizza place, instead of reveling in the the discovery, I begin in a lament: “it’s a shame I never knew about this before.”

Casual shame is such a wet blanket. It follows us around at parties to read us our rap sheet. It saps the joy not only of bygone pleasures, but even those that are just becoming real. And in the end, through the power of sheer embarrassment, it keeps us from making the changes we desperately want to make. “You know your track record on getting up early,” it whispers. “Why even try?”

This is one reason people give up their resolutions by the end of January. They feel guilty for missing a day, and that spoils the following three days. Even while dripping with sweat on the treadmill, they excoriate themselves for not running enough.

I was talking with my spiritual director last week about the changes I’ve been making in my walk with God, and about some more I’m hoping to make. I tell him I’ve been apprehensive about committing again to routines because I know my own history. The ghosts of half-met goals still haunt me, even on sunny, victorious afternoons.

I tell him all this, and he nods thoughtfully.

“Can I tell you what I see?” He says at last. “I think you’ve been on a long journey, and you suddenly have room to give more attention to these issues. It’s like you’ve been walking through this dense section of trees, and you’re just now coming out onto a wide open space.”

A wide open space. I feel this image deep inside me. It speaks to me, not only because I’m a wee bit claustrophobic (just don’t make me sit in the inside of the booth and we’re cool, okay?), but because it makes so much sense. He helps me to see it: I just turned forty. I just put out my first book, which capped off a long, painful, redemptive season. I’m about to celebrate my 20th anniversary. And my life is starting, for the first time in ages, to make a good deal of sense.

If there’s ever been a time to silence that casual shame and embrace the promise of dawn, it is today. This open space is a hopeful gift. A rising sun. I want to sit in the stillness of these possibilities. I want to breath in the wide, valley air.

“The steadfast love of the Lord never ceases,” the book of Lamentations tells us. “His mercies never come to an end. They are new every morning.” I believe this, but I want to believe it more. If His mercies really are new every morning, then why carry yesterday’s albatross into today?

I’m starting again, and this wide open space is giving me life. You might not be walking in a prairie like I am. You might be tiptoeing the edge of a mountain ridge. You might be wading through a swamp, or cutting through a thick and dangerous rain forest. Really, I get it.

Nevertheless, the dawn that comes to me comes to you, also. Every day, a new sun rises over all our plains and peaks, our bogs and our jungles, to do battle with the casual shames that tie up our souls. And every day, the light from that sky reminds us of the promise, “Behold, I am making all things new.”


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


Photo by MabelAmber at Pixabay

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

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

From the Other Side of 40 (A Strongly Worded Letter to my 20 Year Old Self)

In a shocking turn of events, I turned forty yesterday. And when a writer turns forty, he has an obligation to do one of those “letters to my younger self” articles. Those letters, however, are usually kind and gentle. My younger self needs a stern talking to. So here is my “strongly worded letter” to my twenty year old self.

Jason,

I’ve got three things to say, and you will listen. I don’t know whether it will change anything. We haven’t established the rules of time travel in this particular fiction, but I’m going to try, and it’s going to sting. Let it sting. Invite the sting. The sting is your friend.

#1. Your dreams are over-rated. Stop believing in them.

No, I’m serious. You think you know what you’re about right now, but you don’t. You have created a version of yourself who you plan to parade into courtrooms and, eventually, political races. You picture him gliding before the jury, evidence in hand and soliloquies on his tongue. His words are irresistible, his logic irrefutable. He is gong to do all of the big, noble things. He will change the world. There is only one problem: that man doesn’t exist. You made him up.


I’m not saying your dreams don’t matter; just that they’re not really yours. You borrowed them. You saw other people living them out (mostly on television), and you mistook them as your own. But I assure you, you were not built for such visions. You would be a terrible lawyer, and a worse politician.

Listen: everyone will tell you to follow your dreams and let your heart guide you, but that’s nonsense. Your heart will constantly deceive you, and your dreams will change. Let them change. Some things seem so urgent now, and you’ll soon forget all about them. That’s okay. You’ll have new dreams as you get older. Better ones, I dare say. Because your heart itself will grow. Let that happen. Trust that process. Don’t take yourself so seriously.

(A quick aside here about your political obsession: It’s stupid. Politics takes up far too much real estate in your mind. It makes you anxious, and it keeps you from trusting people. You get one vote ever two years. That’s it. So stop pretending your rants carry so much weight and wisdom. They don’t. Invest your energies in learning to love your neighbor. You’re not going to gain any wisdom until you start listening to people anyway.)

#2. Beauty will save you

Ah, you hate this one, I know. You hate it because you’re so self-sufficient and assured, and this sounds like it belongs in the domain of artsy feelers. But hear me: you’re going to take some lumps soon, and those lumps are going to change you. They’re going to disorient you. You’re going to hurt like hell, and you’re going to want to dodge it all.

Don’t dodge it. Invite the pain. Invite the softening. Don’t fight it. Embrace it.

Over time, you’ll learn to tear up in books and in movies. That’s okay. That’s just you becoming a real live boy. When Mr. Fredrickson sees his wife’s additions to the adventure book, let the tears come. When Shasta finds the mountain pass and meets the lion, don’t fight it. When Lee says, “timshel,” choose to feel the weight of his words. When Orual presents her real book of accusations against the gods, pull that scene deep into your heart. Art will nourish you if you will let it. Beauty will preserve your soul. It will bring empathy–a deep softening that will benefit you and those you love. And if you need any motivation here, which I know you do, consider this: you will never be able to write anything good until you learn to cry.

#3. You need other people more than you can possibly imagine

You know that girl you’re about to marry? You don’t deserve her. The narrative of your life together will take shocking turns. You’ll have your beautiful children, but things will be different. So much different than what you planned. You will ache together. You will take turns being strong for each other. But she will take the longer turn. She will carry you, and you need to be grateful.

Seventeen years from now, something small will happen. You’re going to develop a nickel allergy, making you allergic to your wedding ring. So you’ll go without one for a few years. Then, out of the blue, a man will hear you preach, and he’ll offer to make you a new one that you can actually wear. But instead of gold, he’ll inlay it with redwood.

There’s this thing about redwood trees you will know by then: despite their immensity, their roots are shallow. Very shallow. And yet they stand and grow tall even through pounding rains and heavy winds. How do they do it? They grow in crude circles and tie their roots together. Beneath the ground, they become intertwined and inseparable.


Your new ring, then, will tell the story of your marriage. Your family. Your life. It’s a simple story: the winds came, but you did not fall. Despite your weakness, you stayed standing because she was next to you, holding on for dear life. Others held you up, too. Your daughters, your friends, your community. They are all strangers now, but they will be family someday. Tall, tall trees.

So stop believing in yourself. You’re not strong enough to warrant that kind of trust. The math doesn’t work out. You need other people. Embrace that fact. The sooner you come to terms with your own smallness and your tendency to selfishness, the sooner you can take your place in the broken circles of linking souls.

Please, don’t misunderstand me. You’ll have a wonderful marriage. You’ll have amazing children, a nice home, dear friends, and a great job. You’ll even write books like you hoped you would. You’ll discover meaning in blessing others.

I’m not saying life won’t be good; I’m saying you won’t be in control of any of it. So decide ahead of time to let go. Don’t wait. Learn to trust God. Learn what it feels like to have other people’s arms holding yours high. Then, when you turn forty and you discover how much growing up you still have to do, you can face it all with the confidence of one who knows he’s not alone.


A shout out to my friend Dan of the 511 Workshop. He’s the artist who made my new wedding ring. He does phenomenal, custom work. Check out his website and Facebook page. This is the ring he made for me.

On the Steps, Waiting for a Bus

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

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)

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

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.

Good Friday Sketches

Shallow Sleep and Slow, Deep Breaths

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

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 Your Daughter Turns Sixteen, and You’re Not Ready

I remember the light from our closet, and Sara rustling around inside. It was early. Too early.

“You okay?” I asked.

“My water broke,” she said. We were just twenty-three. Babies, it seems now, having babies.

I tried to help get her ready but there was nothing much I could do. Her bags were packed and she was ready to go, but she insisted she didn’t want to go yet, so all I could do was pace. Finally, I turned on my Sega Dreamcast, and played a frantic and frenetic game of Crazy Taxi. For at least an hour, I skidded and smashed my way through the virtual streets of San Francisco. I was antsy, barely in control of my yellow cab, and barely aware of where I was supposed to be going.

Eight hours later, a nurse slid my pink and screaming daughter into my awkward, shaking arms, and I was undone.

Sara and I always tell new parents they can’t be ready when the first child comes. Not really ready.  There are too many eventualities, too many blinding surprises–both good and bad–that will re-route even the best made predictions about what parenting will be like. And even if those detours are rare, you’ll never know the feelings you feel until you actually feel them. You can’t be ready.

But I never knew that such advice was evergreen, or that it was actually for me. Parents can’t be ready for their daughters to turn sixteen. Not really ready.

Since the day Emily was born, we have skidded and smashed our way through grade school, middle school, and middle adolescents; through four states and four siblings, and a thousand iterations of “I’m sorry.” And we’ve been antsy, barely in control, with only a vague impression of where we were going.

Part of me is a little ashamed, because I thought I’d have figured it out by now. I thought understand this thing called “fatherhood,” and how to graciously adapt as our children adapt. But instead, I’ve incurred massive debts to my kids as they’ve grown. All five have had so much to forgive, and I fear they may have to forgive more, because I’m such a slow learner.

And yet, miracle of miracles, here she is. Our prototype. She’s a strawberry blond wordsmith whose mind runs on fairy tales and hot tea. She stands there with her poet soul somehow intact, and her ever-breaking, ever-healing heart softened and ever-turned toward her family. You should see the patience she gives to her brothers, how she cheers on her sister and mother, and how she continues to overlook her father’s ineptitude. We did well to give her the middle name “Grace,” for that is what she breathes.

Even today, she exhales it. While the family should be dancing the day away in honor of this milestone, her autistic  brother Jack is about to undergo a major medical procedure two hours away. That means we’re leaving on her birthday, and the party has to wait. It’s so typical of her childhood. So many interruptions. So many hours borrowed. But in her eyes, so much compassion.

And now’s happening, but I’m not ready. My girl is poised to take her steps toward full adulthood, and I am still undone. There are a million books about parenting, but not a single one on how to usher this particular girl into adulthood. All I can do is buckle up once more, clutch my wife’s hand, pray to God for safety, and thank Him for this extravagant and beautiful gift: my Emily.

When we Just Want Someone to Understand

“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

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 the Bad News Slimes Us

I had to close my laptop this morning. I couldn’t take it anymore, and that’s probably a good thing. Man cannot live on bad news alone, after all. We can’t survive on a steady diet of devastating exposés.

But how can we avoid them? Our lives are full of open windows. National tragedies, investigative reports, and so many allegations. So many unsettling stories… these things have a way of finding us. They tumble into our living spaces, these torrents of tragedy, and they drag with them an endless stream of simmering hot takes. And at the end of the infinite scroll, all of us feel slimed.

And I know, it is probably good for us to be disturbed once in a while. Truth has to shine, after all, even if it stings our eyes.The internet, that giant spider web of gossip and cat pictures, does some good in this regard. It can be a victim’s sword to cut from the wolves their sheep’s clothing; a smooth stone for a shepherd’s sling. Some giants must be felled, and felled publicly, for the good of everyone.

The air around dead giants grows toxic quickly, however.

How long can we go on breathing it? At some point, the ache in our hearts becomes too heavy, and we have to step away from it all.

I reached that point this morning, so I closed my windows, and folded up my laptop. Out the door I marched, armed with an Apostle’s ancient urgings to think on better things. Pure things. The lovely. The true, the holy, the honorable and commendable, the excellent and the just. (Phil 4:8)

Such advice sounds antiquated in a world of chronic anxiety and 24-7 news cycles. What good is it to think about rainbows while so many storm clouds hover overhead? Didn’t Paul know about the dangers of denial?

But then, denial is hardly a serious risk nowadays. Is it even possible to miss the depravity of mankind?

If you’re like me, you have the opposite problem. You stew over the bad news, not the good news, because bad news still sells best. Even in the digital world, heat rises. The wicked and reprehensible things climb our timelines and lord over our feeds. Bad news always existed. Now, it seems, it is the only thing that exists.

Except it isn’t. It never was.

So I took a walk this morning. The air was cool. Street puddles shown back the sun like funhouse mirrors on the floor of the world. The ground was littered with the remnants of last month’s ticker-tape parade we call autumn. Whimsical purples and golds, crumpled but still pumpkin-bright, all served to remind me of one thing: joy still happens here.

The trees were the best part. They are mostly bare now, but they live on, stretching their naked branches heavenward. It is nearly winter, but spring will come again.

Sadness and vileness and loss… these are real things. But then, so are laughter and survival and redemption. How many victories do those trees oversee? How much love is shared in the houses I passed? How much laughter is traded? How much beauty is created?

And then I consider my own home. How much joy do my children bring me? How much do I adore my wife? How blessed are we to have friends who so readily embrace us?

We will think about and grapple with many, many issues, but we must meditate on these things. Because in the age of bad news, they are easiest to forget.


Feature photo courtesy of Pixel2013 at Pixabay

When we Can’t Carry them In Anymore

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)

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

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”

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

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!

The Lament of Martha of Bethany

Note: Good Friday posts have become somewhat of a tradition for me over the last few years (I’ve put past poems and stories here, here, and here), so I’ll add to it today. This is one of three pieces I wrote for tonight’s vigil at my church, and I can’t wait to see my friend Karli perform it onstage. I think many of us can relate to Martha, the sister of Mary and Lazarus. We crave stillness and thirst for silence, but we can’t find it amid the noise of daily living. For Christians, Good Friday is the best day of the year to set aside our frantic rhythms in favor of reflection and remembrance. It’s a day to light a candle, sit in the quiet, and contemplate the One called Prince of Peace.

 

***

 

Is it wrong that I feel nothing? Because I don’t. Mary is inside blubbering on and on. I can’t console her. They’ve nailed him to a cross, and He’s going to die. People probably think she loves Him more than I, and that’s fine. It’s not a competition. It was never a competition.

But I confess, I do wish I felt things like she does.

It’s always been that way. Even before she could talk, I would find her sometimes laying in the hills, looking up at the clouds and laughing. I would lay down next to her and try to see what she saw, but I could only wonder whether a storm was about to hit.

Now a storm has indeed hit. The greatest one of our lives. Today, we are losing the best man any of us have ever known. Indeed, he has been our hope of redemption: for Israel, yes, but… but more for ourselves. He is our friend, and… we thought He was also going to be our Salvation.

You probably think I’m talking about what happened to our brother Lazarus. And I suppose I am on one hand. Because men aren’t supposed come back from the tomb. I dressed him in his grave clothes myself, if you doubt. Our brother was blue and cold and his flesh stank, and I sealed him off from the world, while Mary cried into her hair. Afterward, I just sat stunned and tried not to seethe at Jesus of Nazareth for being too late.

And then, of course he arrived and proved himself to be right on time. He walked over amidst the crowd of mourners and gawkers and woke up my dead brother right in the thick of the afternoon.

But as unthinkable as that was, it isn’t what I mean when I say He is the greatest man we ever knew. There was something apart from any wonder He ever performed, or any wisdom that dropped so easily from his lips. You see, it was He… Himself… He was the gift. He had this… presence about Him. Mary used to have nightmares of the zealots causing riots in Jerusalem. They would always end with Lazarus dying in attempt to defend us, and Mary about to be speared and… Well, the day we met Him, her dreams stopped. Never came back. And from that day on she just… couldn’t be afraid. It was as if His very presence had chased away fear itself.

Power alone can’t do that. Miracles by themselves can’t do that. Only love can. Love that can peer into the dream world as well as the waking. Jesus of Nazareth. Our friend. Our salvation…

But I fear I missed Him. I missed out while He was here, sitting right in front of me.  So what right have I to mourn His death?  Mary and Lazarus can weep day and night, night and day for a month, and I’ve no right to stop either of them, but I… I…

When they would come to our home—Jesus and the twelve— I would grow tense. And I know, my father used to quote the saying, “Let your house be a meeting place for the rabbis. Cover yourself in the dust of their feet, and drink in their words thirstily.” Yes, I knew it was an honor.

But tell me: in order for anyone to drink in the words of a Rabbi, didn’t they first need a meal? Didn’t they need food and drink and a clean spot on the floor? Mary used to chide me on those nights, “Stop, sister. You’ve done enough. Come join us.” And my anger would burn against her until Jesus himself took her side.

“She’s chosen the better thing,” He said. I could feel my face turn hot, and I looked at her, expecting to see some victory in her eyes, but she was watching his face with a clueless kind of glow, like a young girl laughing at the clouds.

So I sat. I sat while He spoke of the goodness of God, and the strange ways of the Kingdom of heaven. I sat, but I did not listen. How could I? In the morning, they would need breakfast. Someone would need to make the bread—that certainly wasn’t going to be Mary, and Lazarus would be working in the fields. So while Jesus spoke words of life, I shut my eyes and counted loaves and dirty rags.

And a voice inside me screamed, “Stop, Martha! Just stop and behold Him!”

But I could not heed the voice, and that is the difference between us. Mary pours out her adoration with quietness and tears and kisses made of sweet perfume; I pour out mine with stale wine and worries. I want to quiet myself too, but my mind just… won’t… stop… Even now, I know I should go to him and sit at the feet of his cross. It’s not too late, he should be alive for hours still. I could go and… finally cover myself in his dust.

But I just can’t! There is just too much to do! I must plan for his burial. We already have grave clothes ready for him, only once used. Lazarus will not mind—and I’ll get help with the myrrh, and… and…

Can you hear her weeping now? Oh my sister… I just want to feel what you feel, but I just don’t know how.

Autism, Fatherhood, and the Lure of Isolation

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

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

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

“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

Dear Perfection (A Letter on Valentine’s Day)

Dear Perfection,

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

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

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

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

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

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

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

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

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

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

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

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

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

We are flawed, and yet we are loved.

We are going gray, and we are loved.

We fail hard, and still we are loved.

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

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

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

Regards,

Jason

A Letter to my Autistic Son on His 11th Birthday

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.


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

To Be Satisfied by Wonder

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

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”

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)

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