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

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Dear Jack,

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

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

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

You both looked so beautiful. So full of peace.

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

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

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

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

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

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

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

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

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

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

You are our son, not our science experiment.

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

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

 

-Dad

well-done

A Letter to My Autistic Son on his 10th Birthday

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Dear Jackson,

Ten years ago, I was watching Super Bowl 40 when your mom went into labor. The silly woman… did you know she told me we could watch the rest of the game before we left for your delivery? She really did! But I knew that decision might come back to haunt me, and I was eager to see you anyway. My first boy.

We left during the game and met you a few hours later. We gave you the middle name Landry after the legendary Cowboys’ coach, because football is a part of Hague culture. Part of my world. Like every dad, I had visions about sharing my world with you. We would watch sports and read Narnia, and you would have lots of friends to better annoy your sisters.

By now, you know what happened next. When you turned two, you lost all your words, and we felt like we lost you. We couldn’t bring you into our world. That’s when we began searching for ways to reach you. To connect with you. We’ve been on that same journey for years now, and the truest piece of advice we have heard was this:

“Stop trying so hard to bring him into your world. Come into his world instead.”

We’ve done our best to follow that advice, son, especially this past year. And right now, on the eve of your 10th birthday, the most prominent features in your world are your movies. I confess, I don’t understand the appeal of all the DVD covers and screenshots that adorn our living room bookshelves, but that doesn’t matter. You do. You line them up, you flap them, you quote them, and you sometimes even watch them.

It is only natural, then, that these movies have become our access point into your world. Into Jackson-ville. We have become experts in Pixar and Dreamworks. We watch everything from Monsters to Minions, we do the voices, and we create all manner of fan art for you. And I suspect that you love it.

Last month, you asked a random question. “Cars 2 or Despicable Me 2?”

You might have been talking to yourself, but Jenna and mom took it as a question.

“Well I don’t really like Cars 2,” mom said.

“Yeah,” Jenna agreed. “Despicable Me 2 is funny. Cars 2 is not as good.”

You responded with this crystalline jewel:

“All right, just because everybody hates it doesn’t mean it’s not good!”

The house exploded in laughs and wonder. You may not be classified as “non-verbal” anymore, but you don’t ever string that many words together to make a sentence. We knew right away that you were quoting Gru from Despicable Me after he tasted Dr. Nefario’s new jelly recipe. You even delivered the line in Steve Carrel’s vaguely Russian-ish accent.

Scripting movie lines is an hourly occurance for you. What excited us was the question of timing. Had you just re-purposed that quote for your current conversation? Were you using Gru’s words to defend Cars 2? Had you just found a way to communicate to us using your own favorite things?

Maybe some day you can set us straight on your intentions, but for now, it takes faith. And I’m okay with faith. There are plenty of reasons to believe.

* * *

“Come on, Jack. It’s bed time,” Jenna said.

You resisted for tradition’s sake.

“Jack, let’s go. I’ve got to brush your teeth.”

You put on a pouty expression and gave another quote from an agitated Gru: “You’ve got to be pulling on my leg!”

* * *

“Jack, do you like school?” mom asked early one morning when the house was quiet.

“No, okay,” you said. That’s just how you say no.

“Why don’t you like school, bud?”

“Awkward,” you said, lifting the line from Rio.

“Oh, is it awkward at school?”

Your voice went low as you answered her. “I… awkward.”

* * *

These are the moments that make us believe you know exactly what you are saying. You are in there, son. We know you are. We know that there is more to your world than we ever could have imagined.

Do you already understand all our conversations? Do you just sit back and take it in? Do you feel frustrated that your body has trouble making words of its own? And why do you like Cars 2 so much? Is it Mater? Do you relate to him? Do you feel… awkward?

My dear boy, your family cheers for you. We want so badly to share your frustrations, to join your laughter, and help shoulder your fears. We want to experience the beautiful messiness of life with you. And it is beginning to happen. Thanks be to God, it is beginning.

* * *

When I got in the van you were waiting for me in the front seat, all buckled up and giddy. I was taking you to get McDonalds fries, your favorite sticker-chart reward. When I started the van, you looked up at me with one special request: “Hiccup?” You asked.

I launched right in, doing my best impression of the Stoick the Vast from How to Train Your Dragon. “Hiccup, son! We’ve got to gooo gaaaate yer fraaaainch friesss!”

Your eyes glowed. I know why. The scene is made up, but familiar. A boy and his father.

“I don’t know, dad…” I countered in Hiccup’s ever-quivering voice. “What if a dragon takes one?”

Your smile stretched as I switched back to Stoick.

“They woooon’t, son! Not if ya eeeeat them fossssterrrrr!”

You fell apart in laughter even before the tickling began. We shared every drop of that moment.

There are so many moments. So much laughter is ours now.

Your future can look however you want, son. Jackson-ville is your world after all, not mine. But I’m so glad you have chosen to let us in. Thank you for letting us in.

We love you, buddy. Happy Birthday.

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A Letter to My Autistic Son on his 8th Birthday

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Dear Jack,

You’re turning 8 today, and the snow is falling just for you. We don’t get much snow in the valley, but all of a sudden, it’s coming down, and you are right now glorying in the experience. It is a testament to you that none of us doubts the possibility that God sent the snow just for your birthday. Because you delight us, son, and it stands to reason that you delight the hosts of heaven even more.

While I hope the snow lingers a bit, it must not interrupt the mail, because your present is coming. The “American Spy Car.” You’ve been checking the mailbox for it every day. When it comes, you will do what you always do. You will line it up on the bookshelf with other toys of its genre–in this case, Lightning McQueen, Mater, and Finn McMissile–and then you’ll flap the daylights out of them all. And I will think of the autistic boy in Japan, who could not speak but learned to type. He wrote a book explaining why he does the things he does. Flapping? He explained that light can be so harsh sometimes, and the act of flapping filtered it. Calmed it. Made whatever he was looking at more beautiful.

Is that why you flap, son? To make things more beautiful?

There was a time when these questions depressed me, but they intrigue me now. You intrigue me. Especially after what happened last week.

You brought this book home from school. It was a red, cardboard book for very young children. Every page showed the same two characters: a big penguin and a little penguin. “I like it when we hold hands,” one page said, or “I like it when you tickle me.” You opened it up next to your mother and smiled brilliantly, pointing at the big penguin, then the little one:

“Jack and Daddy,” you said.

Mommy sent me a frantic message about it. When I came home, you were almost as eager to say it again as I was to hear it.

“Jack and Daddy.” It made you giggle. Your eyes were alight. And mine were welling up.

It’s not a simple thing, son, to understand relationship. This has been why your mom and I sometimes still get so sad about your experiences. The limitations of your autism have stopped your tongue, and severely hampered your connections with people. With us. And this is not the way it is supposed to be. It is wrong.

You have probably heard me say things like “God created us for relationship,” because I am a preacher, and I say that often. I believe it with all my heart, and that is the top reason why we fight for you. Because you are our son, and we want you to experience all you were meant to experience. And the most basic experience a child ought to feel is the love of his own family.

We didn’t know you felt it.

But then came, “Jack and Daddy.”

Did you understand what those words would mean to us, my boy? Did you say them on purpose, to assure us that you do know our love? That you get us?

I hope that you can read this someday, and understand the joy that comes with your overtures of affection. Just a glance from your eye does wild things to our hearts, son. And I am honored beyond words to be penguins with you.

Click here to read the next birthday letter

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