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

A Letter to my Autistic Son on His 11th Birthday

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Dear Jack,

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

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

I think I know why you feel awkward.

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

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

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

They don’t know you.

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

No. They don’t know you, son.

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

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

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

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

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

Dad



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

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