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
What a beautiful story of your fears, hopes and pyayers for your son. I totally get it having a 20yr old autistic grandson. Not knowing what the future holds is the worst part. I wish you and your son the best.
Thank you, Beni. I really appreciate that. And you’re right: the unknown is difficult. We’ll make it through, though.
Whenever I read about your sways of emotion with your son I am swept up into my life with Harry my grandson. He is now 22, non verbal but completely aware of all around him, we live about 120 miles away but see him very frequently and my daughter and son in law share everything with us about all aspects of his life. Twenty two years feel like months yet he has developed and regressed in waves during this time but the direction is always forward. I await your book keenly, you will help so many young parents who are already walking on this painful yet also joyful path. May God be with you in your writing.
Thank you, Maria. I appreciate that very much.
We love you guys. You are prayed for. That’s all we know to do, being so far away. You’re loved and dearly missed…
Oh, Yvette, so wonderful to hear from you 🙂
Thank you so much. We love you guys, too. For the record, in the week since I wrote this, we’ve already seen some hopeful changes. Tonight, we went swimming, and Jack was more full of joy than we have seen him in many months. So thank you for the prayers.
How tenderly, sensitively, painfully Jason unwraps this moving story for our eyes … we will never understand at level the depth of this pain, but sharing the conversational pivot points with us is a good start – there is so much to be learned from this families and children. Thank you for the gift of your story. You have moved us deeply.
Thank you. I appreciate your heartfelt honesty and I cried. However your honesty helps people like myself to understand a little what other families like ours go through and we are not alone. The trials, the difficulties, rejection. Misunderstood. It is a journey, for most of us totally alien, very few signposts. I look forward to your book, it is God breathed to help so very many people. Again thank you..
Thanks for that, Heather. It really is good to remember we’re not alone.
Hi Jason, I’m still crying over this great post. My grandson, Jonathan, is 9 and mostly nonverbal. I’d give anything to know what he’s thinking, or what he’s feeling when he’s screaming and crying for hours on ends, or what he finds so incredibly funny at times. He looks deep into my eyes as if he’s telling me, “Please help me,” and it’s the absolute worse feeling in the world to know I’m unable to do that in the way that he wants and needs me to. 😢
Anyway, keep up the good posts, and I’ll stop my writing now so I can stop crying. 😔
Man, I know that feeling. It IS the worst…
Beautifully written and poignant-thanks for sharing. I will keep your family in my prayers. God bless x