We were standing on a narrow beach in Northern California, my family and I, when came my favorite moment of the year. The girls were exploring the fresh water stream with their mother and the little boys behind me, and I was staring over Jack’s head at the swells of water elbowing their way between the two massive jutting rocks that frame the landscape. Those waves always looked too big to fit, but without fail, they would tumble through toward the sand like a throng of angry peasants storming the castle gates. It was mesmerizing.
Soon, I realized Jack wasn’t watching the water, though. He was watching me over his shoulder, and he wore his sneaky grin. What are you getting at, I thought, as he tiptoed toward the waves, eyes still fixed back on me. And then it hit me: He wants me to chase him. He’s reliving our video. The “Jack and Daddy” video, as he calls it. The one that went bananas on the internet this year.
I took off running toward him, and he braced himself, laughter spilling out of him. I picked him up and ran into the surf and started spinning round and round the way we did in the film, and when I set him down, he squeezed my hand and started running down the beach like we did when the drone flew overhead. We were both laughing now. It was pure, unfiltered Jack-style affection.
It was a feedback loop of reality and play: Life imitates art imitates life.
Loops are familiar to autism families. We live with repetition, and I don’t just mean routines of screen time and trips to school. I mean loops of scripted movie dialogue and songs. I mean repeated phrases shouted out during storms of anxiety. I mean the dizzying patterns of progress and regress.
It’s been that kind of loopy year for us. Jack was doing well at the beginning of 2016, but then had his biggest regression since The One that started it all. He went silent on us for two months and when his voice returned, he had forgotten words and basic letter sounds, not to mention strength and motor skills. The change was so startling we found a neurologist and began a battery of tests. “Whatever it is,” the doctor said with a shrug, “we’re dealing with something beyond autism.”
The tests results strongly hinted at a form of epilepsy. Jack doesn’t have scary, obvious seizures, but he does stare off sometimes. Well, oftentimes. If those stares are absence seizures, they could be resetting his progress. one step forward, one step back. Sometimes more.
I confess I felt a little vindicated. I thought now, at long last, it might be acceptable for me to be upset about Jack’s condition. In my circles, you are supposed to celebrate all that autism brings, but it’s more or less okay to dislike things like epilepsy. And I’ve done my best. I strive for “autism acceptance” in that I want to see a world where everybody accepts our kids no matter what their neurological condition. But sometimes there comes a pressure to pretend to be happy about it all. Try as I might, I haven’t ever been able to cross that bridge. It’s not that I’m miserable; I’m not. We don’t hate the kind of life we received, but we’re not always thrilled about it, either. Is autism a blessing or a blight? As I said in my video, “I don’t know, and I’m weary of caring.” So I’ve tried to write from a neutral position.
Then, when that same video went viral, things shifted.
Suddenly, people were asking me to speak about this and contribute pieces to that, and they got all excited when I commented on their posts. I wrote a poem they liked, so they saw me as a spokesman. An autism advocate.
But the truth is, I’m not a very good advocate. A good advocate lets the truth be known, and lets it be known loudly when necessary. A good advocate raises hell and doesn’t take anyone’s crap. A good advocate knows what to think. I don’t. One day, I’m thankful for the enormous strides we’ve made in culural autism accommodation. The next day I bemoan the lack of remedial understanding. We have come so far. We have so far to go.
And that’s my problem. I haven’t arrived at enough conclusions yet. My story is, for now, a looping story. We step forward and we step back. We progress and we regress.
Times are good and times are terrible, and then they turn good again.
Jack regressed in 2016, yes, but I’m happy to report he’s come roaring back this fall. My boy is now spelling out his own thoughts on the letters of a laminated keyboard. He told us he likes to sing, that he wants a cat, and that he really likes family time, especially when we re-enact Winnie the Pooh scenes. We rejoice at breakthroughs, and when they go away, we ache to see them again. It can be a dizzying ride. One day, we will arrive at some form of certainty. We will understand what is really going on with my son and how to proceed into his adolescent years, and maybe then I will know what to think.
But for now, we loop forward. We spin round and round like a scratched CD, sputtering and reaching and praying for the next moment of unbroken melody. We spin like father and beloved son, ankle deep in cold oceans. And while we spin, we cannot help but laugh.
(For those who didn’t see it back in August…)