Shallow Sleep and Slow, Deep Breaths
It’s early in the morning, and I’m sitting in my living room when I should still be in bed, because Jack’s OCD overtook our night again. This has been happening for weeks now. Our boy is twelve and severely autistic. In recent weeks, he’s been waking up in a panic and running into our bed seeking reassurance that the sequence of his iTunes movies hasn’t changed. We give him that reassurance, but he asks again. And again. He grabs our faces and pulls them to his ear, begging for confirmation.
“One Good Dinosaur?
“Yes, Jack, one is Good Dinosaur. Now let go of me, and go to sleep. Please!”
[Pause.]
“One Good Dinosaur?”
This movie list was something of a revelation a couple months ago. It was a haven for him; a shield of comforting words to deflect the unpredictable world around him. But he’s become dependent on that shield. Now, if he doesn’t hear his words the instant he demands them, he panics. And he wants to hear that repetition at all hours of the day and night.
Thus, the past weeks have been frustrating for my young sons who share a room with him. They have to feed him his lines or else put up with the screeching every evening. It’s been demoralizing for my girls, who often have to take care of him and keep him calm when we’re gone. It’s been exhausting for Sara and I, because we lose hours of sleep trying to console him. And it’s been maddening for Jack, too. He’s probably wondering why he can’t seem to calm down.
We’ve been through some ups and downs with our boy, but I’m not sure we’ve ever seen such unrelenting anxiety. Not for this long, anyway. We’ve never dealt with so much panic.
So what’s going on with him? We don’t know.
He’s twelve, which means he’s got new hormones beginning to pulse through his veins (don’t try and make me say the word, YOU’RE NOT MY MOM!). He also had brain surgery two months ago, and who really knows how much that might be throwing him for a loop?
We ‘re working with some good professionals, and we are all on the case together. Please understand, I haven’t come here today for medical advice, or (God forbid) for pity. We are trusting our doctors, and we’re trusting God. We’ll get through this spell. We always do.
So why am I bothering to tell you all this? Because it’s true, that’s why. And because late on, when I tell you about the good times, I want you to be able to trust me. Parenting any child, let alone one dealing with severe autism, can be a heavy task. It is beautiful. It is also, at times, terribly difficult.
What good is it, then, to pretend life is binary?
The Twitter Tragedians who trumpet despair are every bit as half-blind as the the happy-clappy Christians who pretend to be “inside-outside-upside-downside happy all the time.” Life is not one dimensional; it is full of tension. The rain falls on the just and the unjust alike. Sometimes it’s an Oregon rain: light and drizzly, with no need for an umbrella. And other times it’s a good, old fashioned Texas downpour, and you get soaked.
We’re pretty drenched right now. That’s just the truth. But we’re not hanging our heads, because we know the clouds will part. We’ve already seen bursts of sunlight, like when Emily, our sixteen year-old daughter, discovered a new coping mechanism for Jack’s meltdowns. It happened last week during an awful panic attack. It was a bad one, and she was barely hanging on herself.
He ran into the living room, screaming at the top of his lungs, “One good dinosaur!”
She caught him and wrapped her arms around him, whispering, “Deep breath.”
He listened to her. He inhaled, then blew out slowly.
“Good,” she said. “What’s next?”
“Two Dragon One!” he cried.
“Deep breath.” He obeyed again. “Good. What’s next?”
“Three Dragon Two!”
“Deep Breath…”
And on she went, all the way to “Fourteen, Up.” (Yes, we added a couple and we’re up to fourteen now, for those keeping score at home.) When she was done, he was calm again.
It was magic. My kids are magic.
So even though I won’t pretend that life is all breakfast peaches and unicorns on a Thomas Kinkade cobblestone porch, I won’t despair, either. We have hope. We’ll find a way. We’ll make it through this.
You’ll make it through your rough patch, too. The first step is to admit where you actually are. Acknowledge the anxiety. Acknowledge the pain. Pray from that place–that throbbing, sore spot. All the best prayers come from there.
And then?
Take a deep breath. You’re going to make it.
Thank you for posting this. It is great to see your honesty in this journey. Praying for y’all.
Thank you, Alan. I appreciate that.
Beautiful. Acknowledging the truth of the hard times is difficult and powerful.
Thanks, Molly.
I love it when people are real with what is going on i their lives . Thank you.
Thanks for reading, Christine. 🙂
As I often tell people as I share the video, very few blog as lucidly and transparantly as you do. Thanks for continuing to share both the highs and the lows and many of the in-between, too.
Thank you, Grace. I always appreciate your encouragement. 🙂
Thank you for sharing, Jason. I know just how what seems to be a solution can quickly become a source of anxiety in and of itself. It’s so beautiful that your daughter discovered that calming technique. I especially appreciate that you’re showing how hard it is but also that there’s hope, and that you’re working with who your son IS right now and not trying to change that.
Yeah, her solution was so helpful, and even last night we had another idea that helped him go to sleep without melting down. There’s always hope…
Thanks so much for writing Jason. You have been a great encouragement over the years (time flies!). Sometimes when I get the email notification of a new post instead of reading it right away I will “save” it for a moment of great despair. I did that with this article and when I read it this morning it provided hope and encouragement. Thanks from the opposite coast.
John
Hi Jason, I love following your blog… it gives me hope and comfort during the hard times. I was re-reading this again today and was thinking that my Ethan, 5 non-verbal, is a visual kind of guy. Would it maybe help Jack if you printed out and laminated his movie list and put them in like a book kind of thing that he could possibly flip through?
When we need to calm Ethan a bit he has his favorite books that he will flip through.