Autism and the Two Shades of Uncertainty
Uncertainty is a humiliating reality. Just when we begin to wrap our minds around a situation, a new question flies in out of left field to make sport of us and our silly conclusions. So we try again and it makes sense for a while, but then comes another baffling surprise to humble us. And we think, “Did we understand anything at all? Ever?”
For special needs parents, this cycle can be especially dizzying. Mystery has permeated our family life this year. Jack, our twelve year old with severe autism, had brain surgery in early January, then suffered a major regression in early February. We don’t know why it happened, but his anxiety has been more or less out of control, and it has affected the entire household. We’ve been more stressed and less patient. We’ve been more tired and confused. And we’ve been thinking more about the very uncertain future our boy faces.
I told you a bit about all this early on: how his sacred list of iTunes movie titles provided him with comfort, and how he began to rely so much on that comfort that he would suffer a meltdown when nobody recited it for him. Well, this problem persisted and expanded. He started asking new questions about his favorite movies (particularly The Good Dinosaur), and would demand a very specific response. Here’s an example.
Jack: “Good Dinosaur is number one?”
Us: “Is it?”
Jack: “Yes.”
Two seconds later.
Jack: “Good Dinosaur is number one?”
Us: “Is it?”
Jack: “Yes.”
And again, and again, the scripts would go until late in the night when our nerves were shot. We would close the door and tell him to go to sleep, but then the screaming would begin. He needed his sentences; he needed our repeated assurances that the world wasn’t going to tip over while he slept.
Jack: “Good Dinosaur deleted?”
Us: “No, Jack, it’s not deleted. It’s your favorite movie. Go to sleep.”
Jack: “GOOD DINOSAUR DELETED?!?”
His sisters started retiring to bed early without the customary game nights with mom and dad or the shared episode of The Office. And his brothers became refugees in their own home. If they stayed in their room with Jack, they would have to feed him lines all night long, and none of them would sleep.
Things turned around a bit in May, but he’s taken a dip again since Apple auto-updated some of their iTunes movie covers two days ago. The Good Dinosaur picture is different. It’s just Arlo now. Spot is gone, and Jack’s head is exploding.
Through this season, our most successful strategy has been “Super-Happy-Funny-Voices-Dad-Mode” at bedtime, in which I talk to him in the familiar voices of his favorite movie characters. Some nights, Mater and Lightning McQueen (I do a KILLER Owen Wilson, guys… very proud of it) talked about the virtues of sleep until Stoic the Vast and Hiccup warned of dragons who tickle. Sometimes I do Gru (this one’s also pretty strong, I think), and the younger boys jump in as the Minions, and we get Jack smiling and giggling before the lights go out. The overall result has been a calmer, easier to please son.
“Daaaaad?” He will call after I say goodnight. And I’ll march to the entrance of his room.
“Yeah, buddy?” I ask in the most chipper voice you can imagine. It’s nauseating, really.
“Good Dinosaur IS number one?” he says.
“Is it?”
“Yes.”
“Awesome. Okay, good night buddy!”
We have had encouraging success with this strategy. I think it’s because he’s like many of us: he hates the feeling that he might be making people upset. I think he knows when we are frustrated with him, and it tears him up inside and makes everything worse. I think he feels terrible about his meltdowns, but he can’t stop them. Thus, a calm and pleasant voice seems to be good medicine.
But now I keep wondering this: how do I ensure “Super Happy Funny Voices Dad Mode” doesn’t become like the movie list–the new thing Jack can’t live without? How do I keep the medicine from become the new obsession? I’ve never had to think about the concerns doctors and pharmacists face regarding pain and addictive medication. I think about it all the time now.
The world is so unpredictable that today’s clear solutions can, without warning, morph into tomorrow’s problems. Mystery is a bully.
But there is another side to uncertainty. A brighter side. The openness of things can, in turn, be a blessing. In the special needs parenting world, for instance, there are myriad sad pronouncements about the future:
“Your child will never speak.”
“Your child will never have friends.”
“Don’t get your hopes up, because he won’t read, let alone graduate from high school.”
Such predictions usually come from the well-meaning: the self-proclaimed realist, the overly-protective family member, or the multi-credentialed expert.
The fact remains, however, that our tomorrows are not set in stone. There are too many examples from children among our own ranks who overcame; relentless kids with tireless parents, forging a way past the curses toward breakthrough. Maybe it comes through a therapist, or a drug. Maybe it comes through a prayer. Maybe something just clicks one day.
So it seems uncertainty has another name: we call him possibility.
That means we can’t despair in this season, and we aren’t despairing. True, we don’t know what might be around the next bend, and that’s a cause for fear. But that is also a reason for hope: we don’t know what might be around the next bend. Today is a new day with real openness built into it.
So how do we carry ourselves through our enigmatic lives? We pray, we endure, we love, and we keep leaning into the mystery. Breakthrough will come, but we don’t know how or when. Life is full of uncertainty, yes, but hovering over it all is the God of Possibility.
