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When we Can’t Carry them In Anymore

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And he will. Just wait and see.

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

Autism, OCD, and the Longing for Home

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

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

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

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

I knew at once what he needed.

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

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

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

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

“No fank you! No fank you!”

Well okay then.

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

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

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

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

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

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

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

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

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

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

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

All it takes is a whisper from our Father.

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

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

“Cars 2.”

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

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

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

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

“Want to be what? Like Mater?”

“I want to be… hero.”

***

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

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

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

“Bye buddy.”

“Bye buddy.”

“I love you.”

“I wuv you.”

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

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

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

***

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

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

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

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

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

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

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

***

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

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

He already is.

(Feature photo provided under Creative Commons license by Judd Hall

Dear Perfection (A Letter on Valentine’s Day)

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Dear Perfection,

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

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

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

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

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

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

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

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

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

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

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

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

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

We are flawed, and yet we are loved.

We are going gray, and we are loved.

We fail hard, and still we are loved.

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

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

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

Regards,

Jason

To Preserve Their Innocence

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

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

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

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

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

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

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

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

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

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

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

***

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

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

For Those who Ache on Father’s Day

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I know this day sucks for you. You’ve been ripped off in the dad department. Most days, you hardly even think about it. Sure, there’s that dull ache in your psyche, but you can usually ignore it now. You’ve taught yourself how. Just like you’ve taught yourself all manner of things.

Does it help you to realize you’re not alone? I’m sure you know that already. Even if your friends haven’t shown you the scabs on their memories, you have seen it in the culture. You’ve seen it in the cynical presentation of fathers on TV. When was the last time you saw a good one? A really good one? My friends and I used to pose this question all the time. Why are TV dads so distant and aloof? Why are they incapable of being serious? Why can’t they, for the life of them, offer one piece of solid advice that their wives do not have to come sweep up afterward?

Cliff Huxtable (a.k.a. Bill Cosby in The Cosby Show) was the shiniest of exceptions. He was always caring, but firm. He knew his kids inside and out, and he did not let them walk all over him. He was smarter than they were, but always deft enough to validate them, and guide them toward better wisdom. He was never intimidated by his wife’s graceful brilliance, but welcomed it and complimented her with his own keen insights.

We loved Cliff. He was a fantasy father for the millions who did not have one, and an uncle, at least, for those who did.

But I can hear you objecting: “Yeah, but look what happened! Bill Cosby turned out to be a—-”

Yes. Yes, I know. Another father, letting us all down…

Listen, this is a crappy day. I’m not going to try to cheer you up, or tell you that you shouldn’t feel the way you do. That resentment… that frustration… those are real pains, and you have a right to feel them. Your dad had a job to do, and it was more than just helping you into the world. He was a sub-creator, and a sub-caretaker. He was duty bound, in everything, represent the One who brought all of us into the world: to bandage your knee; to hold you close; to listen. Oh, how he should have listened! But he didn’t.

This throbbing pain that rises to the surface on a day like today—this reason you want to stay home from church and mute any reference to “father’s day” on Twitter—it is a wound not easily healed. Even Dr. Huxtable, when he was still squeaky clean, could not do it. You cannot sub-lease a pop culture stand-in and live vicariously through his child actors. Fantasy only has the power to distract, not to fix. No matter how you bury your pain, you will get the same temporary result. It will resurface.

There is only One with the power to soothe those old wounds.

He is the One who your father was supposed to represent. And now, even that title makes it difficult for you to trust Him. How can you call God “Father,” and why would He even want you to?

Friend, I cannot explain why things worked out the way they did, but I can assure you of one thing: this original Father of yours is different than the one who hurt you. He has wept with you in your loneliness. He felt every fear, ached with every disappointment, burned with you in the midst of every searing-hot betrayal that branded your soul and convinced you that you were an orphan.

But you were not an orphan.

I will not try to push you toward Him today. I will simply tell you that He waits for you on His porch swing with tenderness and feasting. And through His gentle embrace, He will give you reason to trust again.

 

photo credit: Memory Lane via photopin (license)

A Letter to My Autistic Son on His 9th Birthday

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Dear Jackson,

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

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

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

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

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

This is my story as much as yours.

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

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

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

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

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

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

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

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

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

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

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

You pointed to each word as you spoke:

“I. Can. See.”

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

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

It is coming. Hope is rising.

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

Happy birthday, my boy. I love you.

Dad

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Walk-Off Moments for Special Needs Dads

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Savoring Somersaults

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When a five year old yells out, “Wanna see a somersault?” it is not a question. When he is already dressed like Superman, you had better be watching.

I was watching, from five states away, through my 3.5″ iPhone screen. I watched him plant his head into the carpet, kick up, then fall sideways. Enthusiastic cheering ensued from all sides. My girls tried to take the phone–they just wanted to tell me about their day–but their brothers kept stealing the limelight with their dancing and super hero moves. The phone shook with my wife’s laughter.

I lay there and considered the miracles of technology that allowed me to be with my family, even when I was two thousand miles away. I marveled about how grown up my daughters are, and what a little brute my 2 year old is. But most of all, I thought about apps: “I wonder if there’s a way to record Facetime calls so I can watch this again later.” That thought dominated my capacities for the next 5 minutes.

When I recognized what I was doing, I felt a sting of rebuke. Rather than tasting the moment, I was asking for a to-go box. How utterly silly that was, especially when I could just call them again the next day. Why was I trying to hoard this experience like someone who is about to lose it? It was a small thing, and I might have let myself off the hook, but this is a trend for me.

I try so hard to save things that I forget to savor them.

Case in point: we are a family who takes walks to the park. They usually involve a double stroller, a couple of bikes, and sometimes a tricycle. When we reach the playground, I pull out my phone, and my kids pull out their processed-cheeeeeese-smiles. I follow Jack around the most. “C’mon kid, this is for the blog,” I say. He looks at his feet and tries to duck away from me. “Smile, buddy,” I plead.

“My-o, buddy,” he parrots back.

I squeeze the trigger rapidly and stop when he runs away. I don’t know whether he’s headed for the slide or the bench, because I want to see if I got any good ones first. I flip through them and pass the phone around. “Awww, that’s a good one, dad. He’s almost looking at you,” my girls tell me. And they’re a little interested, I suppose, but they really just want to play lava monster.

When it gets dark, we head for home, where we will relive our playground adventure. I might even throw on a sepia filter. It will go nicely in my digital library with the other thousands of forgotten moments. The best ones will go in a Facebook album, because I’m cool like that.

And years down the road, my kids might even remember that precious evening when we had yet another photo shoot.

Pictures used to prompt memory. Now they can replace it.

I worry about these Instagram filters and Facebook albums. I worry that they could become graven images; sacred stones of remembrance that, by sheer accident, replace the tangible affection with loved ones. I worry that our retina displays are getting between us; that we are living vicariously through our own thumbs.

I’m not assuming that you are the same way. My wife finds joy in the act of taking pictures. Plus, she has a lousy memory, so iPhone photography is a healthy activity. If you’re like her, I applaud you.

But this is about the rest of us. The ones who enjoy gadgetry too much. The ones who take our phones out and flip it between our fingers when we’re idle for more than thirty seconds. For me, technology has become like a nervous tick. I don’t bite my nails, I read the news online. All of it leaves me dryer. More detached from the beauty around me.

And I’m tired of it.

My wife and I went to a Civil Wars concert a couple of summers ago, and I couldn’t wait to hear them sing Poison and Wine. There’s this one part in the final chorus where John Paul and Joy jump the scales together in crystalline harmony. It’s my favorite moment on the entire album. When the song came, I got ready. When the chorus came, I started recording. And when the song wound down, I realized I the moment had flown past me. I couldn’t even remember it.

Oh sure, I had captured it with my hand-held sub-sub-sub par recording device, and I could enjoy that muffled, 20-rows-back, heads-in-the-way rendition ad nauseam. But as for that genuine raw, live beauty… I had missed it. It missed me.

I don’t want to miss live beauty anymore. Especially when it’s doing somersault in my living room.

Waiting in the Land of In-Betweens

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To See Your Thoughts Take Shape

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

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

-U2 (“Miracle Drug”)

“Waffle! Waffle! Waffle!”

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

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

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

“Waffle! Waffle!”

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

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

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

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

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

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

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

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

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


I Am an Expert on My Son

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

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

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

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

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

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

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

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

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

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

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

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

But until then, all I have is my story.

And you have yours.

Can I Love my Son AND Pray for Change?

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Jackson woke up this morning at 6 with a drum solo. It was pretty awesome. He started by beating his hands on the sliding glass door, waking his sisters from their living room slumber party. I smiled. He really does have great rhythm. Then he turned the microwave into a bass drum. I got up.

I took his hand and led him to the conga drum next to the TV and said “Dude, this is a drum. Play this.”

He scrunched up his nose and smiled. Then, he played a masterful hand-drum concerto. It lasted for five seconds. (The glass door is so much more interesting…) Read more

Why No, My Son is Not Rain Man

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I suppose it all started with Rain Man. Dustin Hoffman was just too awesome. America had never heard much about autism before he demonstrated his uber-genius to moviegoers, and we haven’t been able to forget it since. We learned that autism had an exciting side. It might be a sort mutation that grants mental superpowers. Sure, it comes with some baggage, but did you see what he did at the Black Jack table?

That was before the autism epidemic. Before the blue ribbons, the World Autism Day, the vaccination debate. We have “awareness” now. Among other things, we have learned that while many savants are autistic, most people with autism are not savants at all.

But the savant possibility still intrigues us, doesn’t it? The fact that a brain might be hyper-wired for math, music or science at the expense of social skills… that’s pretty cool. So cool, in fact, that we start to look for it even when it is clearly not there. Read more