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

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Dear Jack,

Up until now, I’ve only written you letters on your birthdays, but I’m going to change that, because you might look back on days like yesterday and wonder, “what was that even about?” Well, I’ll tell you.

Mom woke you up at midnight and wouldn’t let you go back to sleep. She pulled you out of bed and led you into the living room where Winnie the Pooh and Tigger entertained you all through night. It was still dark when the three of us got in the van. We didn’t make you put your shirt on, of course, because the van is just as much home as your own bedroom. And when you feel like you’re home, you go shirtless. It’s your thing.

Mom sat next to you in the back in order to keep you awake, but soon she fell asleep. I watched you both in the mirror. Your eyes were open, and your head rested on her shoulder.

You both looked so beautiful. So full of peace.

We drove two hours to that big hospital on the hill. You know the one. When we got inside, a nurse took us into a little exam room and scratched your head with a q-tip and cream that felt like sandpaper. You screamed and kicked and we tried to restrain you. Your eyes were frightened, and your lips were offended. I took your chin in my hands and said, “look at me, son. Look at me. It’s okay. It will only take a minute.”

Your eyes met mine for a moment, and you stopped fighting. You took a breath. You understood me, and you chose to trust us. We have lots of these moments, now. You seem to understand so much of what we say, and even though you can’t respond in kind, you choose to go along with us. It is a pure, sweet faith, but it is weighty, too. It pulls our shoulders low, and makes us remember our naked need for wisdom from beyond.

The nurse put a bunch of sticky nodes all over your head, then you laid down next to mom. She wrapped you in her soft arms under your soft blanket. We told you you could sleep without a shirt, but you said no. I brought out your little blue-glowing pyramid that puffs out sleepy-time smells, then hit repeat on the Monsters University audio story. All the other lights went out.

You were confused. This was not “orange home,” and the hour was not bedtime. We tried to explain it all to you, and I think you might have understood, but just in case, I’ll try again:

The doctors think there might be something going on inside your brain, son.

Something that shouldn’t be going on. They think there must be a reason why your your words have gone away so drastically this year, and why your legs won’t peddle your bike anymore, and… there are just lots of things. Of course, you have autism, but this seems to us like something more.

img_1085-copyThat’s why we keep coming to the hospital. That’s why we put those sticky nodes on your head. We are trying to learn. We are trying to help you. But even the smartest brain doctors aren’t sure where to start, or how many tests to do. It’s easy for a parent to talk big and say, “we’ll do whatever we can to get to the bottom of this,” but the truth is, you’re the one that has to get poked and scratched made to wait in rooms that make you panic. And your mom and I don’t know how far to push with our investigations. How many pokes are too many?

Your bedtime story looped again and again, and you tossed and turned in that blue-soaked room. We prayed with you. We whispered in your ear. You took my hand and pressed it against your eyes, but you would not rest. And I kept wishing you would just take your shirt off, but you wouldn’t do it.

Finally I sat in the rocking chair and prayed silently for God to give you peace. Mom put some lavender on your blanket, and at last, your body went still in her embrace.

I realized then what a wise and healthy thing you had done in keeping your shirt on. You hadn’t felt settled enough to strip it off, because the hospital is not your home. And it should never feel like your home. These tests are not part of your routine.

You are our son, not our science experiment.

I wish I could say there won’t be anymore tests. There will. But if you ever start to feel as comfortable in an exam room as you do in your bedroom, we will have gone too far. I hope you will find a way to say so. I hope you will find the perfect movie quote to alert us to our overwrought efforts. We want to build you a future, son, but not at the expense of your joy. If we are to be worthy of your sacred trust, we will need that wisdom from beyond.

For now, I will tell you what you told yourself when the lights came back on and the test was over: “Well done, Mister Wazowski.” We are proud of you, kid.

 

-Dad

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To Give Him a Super Power

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

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

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

“Dad, what’s Jack’s super power?”

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

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

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

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

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

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

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

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

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

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

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

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

“Jack can fly?”

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

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

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

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

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

Photos by our dear friend Anne Nunn.