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January 15, 2020


My heart took a beating over winter break.
7 min read

My heart took a beating over winter break. Sometimes that happens when my husband and I bring our son into settings where he interacts with other children who do not share his developmental deficits or sensory issues. As much as he might enjoy being around other kids—a boon to us as parents with a child on the autism spectrum—he does not know how to interact properly with his peers. They may look like they are occupying the same room, but in reality, typical children and my son stand miles apart from one another. That gap becomes more visible in certain contexts, like hands-on museums or outside playgrounds. On the morning in question, we visited the former, walking into the edifice like sheep to the slaughter, unsuspecting of the grief and panic that were to befall us. It’s not that we don’t know the risks of taking our son out into the world. We just keep forgetting how bad it can get when our minds are set on giving him a good experience. Like letting him be a normal kid and us normal parents, or as close as we can get to that. Just for a little while.

At first my son did what he normally does in new or special places. He zipped around from room to room, not pausing on any one display nor paying any heed to who was around him and what they were doing (including his parents). Despite our repeated prompts to walk, not run, he could not seem to slow down, nor could he answer “yes” or “no” to the simple questions we were posing about what he would like to do. Not only did my husband and I have to keep track of him amongst the mass of humans crowding the museum that day, we also had to make sure he wasn’t running over smaller children, snatching objects away from others, or not waiting his turn.

In the excitement of entering such a stimulating environment, it’s like my son loses what little language and social etiquette he has already mastered. Imagine being asked to balance your checkbook or recall amendments to the Constitution after a grueling day. I suspect my son’s regressions in busy locations feel something like that to him—as if critical wires to knowledge and self-control have been snipped because it’s all too much in the moment.

My husband and I took on the roles of hypervigilant guardians that we have filled since our son became mobile. We wear backpacks so our hands are free and chase after our target as best as we can. The odds appear stacked against us, given that we are closing in on our fifties while our son’s aging process seems only to make him stronger, faster, and more able to carry out whichever impulse currently possesses him. That he does not answer to his name in manic mode only compounds the issue. That he looks like a typical kid who should know better than to act as he does adds a layer of judgment to the situation. Whatever we might say or do occurs with the weight of many eyes upon us.

So we take our chances and let the roulette wheel spin, hoping the marble falls where we’ve placed our bets. The first inkling that trouble was brewing that morning emerged in my son’s inability to access the exhibits in a purposeful way. One large room was outfitted like medieval castle, complete with an interactive garden, brick laying station, alehouse with food and drink, and a bow and arrow setup. While other children happily pretended to garden, wait tables, and shoot targets, my son simply ran up and down narrow stairs and crawl spaces, laying down on top of the vegetable plot, and throwing balls at targets with his hands rather than using the bows provided. Despite his love of music and musical instruments, I could not get him to try anything on offer in the music room, where other kids were banging on drums and gongs, or activating rain sticks and other devices. Then there was the set of stairs that my son got obsessed with, wanting to travel up and down repeatedly without getting off at the floors on either end. Sadly, some fun rooms he didn’t even enter, such as the block-building room or dress-up rooms.

Then the axe finally fell when my husband and I followed my son into a thick knot of people that we could not penetrate, but he could. Crouching low, my son disappeared into the press of bodies and came out somewhere on the other side—we didn’t know where.

For a few frantic minutes my husband and I fanned out, eyes darting to and fro, hysterical to find our child. When we came up empty-handed, I ran down to the front desk to enlist the staff’s help and to ensure exits to the building were blocked. Thankfully, my husband had dressed my son in a bright yellow shirt that day, and within minutes one of the museum workers found him, playing on a different floor than where we last saw him. “It happens all the time,” the manager reassured me, as if empathetic to the terror my husband and I had just endured. Thank God for her kind demeanor, or I would have completely lost it.

After a few more minutes in which my husband and I gathered what little wits we had left, we left the museum, our son completely oblivious to the trauma he had just caused. In fact, the instant I laid eyes on him after his escape, he could not have cared less that we had been separated. When we got home, we handed him over to the sitter we had scheduled and took a much-needed break. But even as we rested, it felt like years had been shaved off our lives. And not for the first—or last—time.

As I recall these harrowing events, I am staring at a picture I took the last time I ran at the local high school. It shows a baseball wedged beneath the fence separating the bleachers from the track. How it got there I cannot guess, since the field is set up for football rather than baseball. For some reason I suspected that the ball had endured more than its share of bad winter weather thus far, that it had come from a happier, easier season. It looked so out of place as I jogged past it. Lost. Forgotten. Way beyond anyone’s caring.

I distinctly remember something else going through my head as I pushed forward for another lap. A voice saying, “You’re going to hit a home run. You think you’re stuck inside the park, but you’re not.”

Now, I cannot pin down the exact origin of this statement. We hear all sorts of things in our heads, don’t we? But I can say this. It didn’t sound like me. My efforts at positive self-talk remain anemic at best, despite years of effort. Drastic self criticism? Prophecies of doom? I got those nailed, baby. Uplifting words that contradict rock hard “evidence” of how screwed I am—just not my style. And mainly for one reason: I don’t want to end up disappointed. To be the idiot who should have foreseen—and somehow mitigated—whatever disaster or heartbreak has overtaken her.

Obviously there are many problems with this outlook, not the least of which is that it fosters hopelessness and despair. True, you may be ground down and cornered by something as monstrous as autism. You may be ill, wounded, harassed, and abandoned. Short on resources. Overwhelmed by the sheer unfairness of it all. But you deserve a better option mentally than to drink the proverbial Drano and die a painful death.

Once, while caught in the middle of a crisis of faith, I asked a respected friend, “What if there is no God?” What I was really inquiring was whether I should risk believing that Someone out there was going to take care of me. Her answer startled me. “Doesn’t matter if there is or there isn’t,” she replied. “God existing is a better narrative for me.” In essence, my friend had arrived at the same crossroads I had hit and had decided that a story of hope was the option that offered a richer, fuller life. A radically pragmatic approach to faith, but one I have continued to lean on over the years. Maybe because it returns to me a modicum of power when I feel so powerless. I get to choose the story I inhabit, decide what works for me.

Back to the baseball. I think the instant I stopped and snapped a picture of that thing I was already casting my vote in the hope-against-all-hope column. I have no better idea of how life with my son is going to play out than the day we lost him at the museum. But I choose to believe that there is purpose in the pain, and not the dodgy kind where your suffering is the price tag for other people’s happiness. The God of my story employs a higher arithmetic than that, pulling good things for everyone out of the absolutely awful. I also choose to take comfort in the belief that he gets me, understands exactly how I feel, and refrains from judgment even when I judge him. He doesn’t blame me for feeling stuck, discouraged, and angry. Instead he tries to offer an alternate point of view when my defenses are down and I can perceive a different picture.

So here I go, letting myself dream what it might be like to sail high over the stands, escaping the turf that has trapped me so long. Am I a fool to believe that my son will turn some significant corners, that life with him will get better? That he will speak more down the road and it will make all the difference? Maybe. But it beats being a miserable cynic who gives herself over to the darkness, growing more bitter by the day.

When my son looks into my face, I want him to see someone who believes he’s got a shot. That he is and will continue to be a winner, an achiever. And that we’re in this together. Whatever goes for him, goes for me. My guess is that this choice of narrative will set me up to receive and absorb other messages of encouragement. Through prayer, other people, circumstances, scripture.

Next time you hear a positive thought in your head, don’t immediately throw it away. Give it some room to do its thing, which is to make your biography just a little bit better. We’ve got to start injecting life into our stories somewhere, even as we log another lap.

Find someone who will hold onto hope for you in your weak areas, and you do the same for them. Together we can be survivors, overcomers. You’ll see. And so will I.

Meanwhile, don’t stop stepping into settings where risk accompanies the reward. Play it too safe and your world will stagnate. You are neither crazy nor foolish for trying to attain some small, good thing. You are brave. And I applaud you for that.