That Discomfort We Didn’t Feel: God’s Unexpected Way of Giving Rest
As a family affected by autism, the closing of our son’s school due to the pandemic brought cold fear into our hearts. Every summer, we brace ourselves for the ten weeks that he is not in an extended program. The goal during those weeks is simply that he not regress. What chance did we have now that we were required to schedule every minute of every day? Thankfully, with the help of his teachers and helpers, we were able to hammer out a simple schedule. We’ve been amused that some of the behavior reinforcements from school—the ones we call “cashing out” strategies—actually work at home. Titus gave us a funny look when we told him that his tantrum was not cash-out behavior (a.k.a. Garage Band behavior in honor of a favorite activity).
Even more surprising than our son’s acceptance of a daily schedule was that the reduction of our family schedule massively reduced his anxiety. It’s no secret that social events and transitions are major triggers for kids on the autism spectrum, but we didn’t realize that a simpler schedule would leave our son calmer than we have seen him for years. Going to church is especially difficult for our son, because—as a ministry family—that is our most intensely social day. Our son often prepares for the Lord’s Day in his own special way—by getting volatile and not sleeping. This means that, as a family, we must take a deep breath and simply take the day as it comes. Moreover, once the day is done, we usually whisk him away from additional activities. Hanging out in the church lobby or going out to eat with another family after church feels very risky, because we never know when he’ll have enough and cross the line into more volatile behaviors.
Within the first few weeks of the pandemic hitting the States, an article appeared in the Harvard Business Review entitled “That Discomfort You Feel is Grief.” The author, Scott Berinato, suggested that the pandemic had caused the nation to mourn the loss of normalcy in a way that parallels the typical stages of grieving a loss: denial, anger, bargaining, sadness, and acceptance. Our family definitely had that you’ve-got-to-be-kidding-me! reaction that most people seemed to have as well as some irritation at our loss of a regular schedule and the eventual resignation to a new normal. But, honestly, after everything settled in, we realized that our family was mostly feeling relief. We wondered why.
“Our friends are smart, godly people, with healthy family relationships, so we realize that we must be missing something that inspires their sadness. ”
Perhaps the answer was simply that our schedule was relaxed and that our family was fortunate. Thus far, we’ve been spared infection, the loss of loved ones, and the loss of our livelihood. As a family of seven with older kids who (generally) enjoy one another, we’ve even been spared the loneliness that has impacted so many. The extra sleep and extra time for walks, games, and movies has been refreshing. Schooling at home didn’t rock our world because we have home schooled in the past. And the privilege of working from home meant that we didn’t have to brave exposure each day like some of our friends on the essential-worker front lines or those in less fortunate circumstances.
Still, we noticed that a number of our friends whose life circumstances are similar seem to be missing “normal” more than our family. They compared the inability to gather with others to fasting, exile, and wilderness wandering. They quickly responded to Facebook posts that asked what they’d do first when COVID-19 passes, demonstrating that their imaginations had been turning over the possibility. When we checked in with friends, they’d give updates that ranged between “meh” and “really struggling.”
Meanwhile, our family’s response was diametrically different. We could honestly say, “We’re doing fine, better than we have in a long time.” Why the stark contrast? Our friends are smart, godly people, with healthy family relationships, so we’ve thought, “We must be missing something.” We miss our community, but our friends are really missing it. What is it that inspires their sadness and longing to return to normalcy that we’re just not feeling? Were we simply in denial? Why are we feeling relief instead of grief?
“Realizing this has brought a different kind of sadness for us because we realize the lack of discomfort we felt during quarantine is evidence of another type of loss.”
The truth is that for a family affected by autism, not having to face social expectations is a relief. Realizing this has brought a different kind of sadness for us because we realize the lack of discomfort we felt during quarantine is evidence of another type of loss. Being an autism family can be an isolating reality. The isolation is built into the very term “au-tism” (“alone” is part of its etymology.) For a family affected by autism, every social event—every shopping trip, sporting event, invitation, and gathering—must be approached with caution. Every unusual step outside the four walls of our home is considered and discussed before a commitment is made. If the foray is optional, then we always weight the potential for blessing against the potential for distress, both for our family and for those with whom we would be socializing. If the event isn’t optional, we’re spared the decision and the fear of missing out, but we feel a different weight—anticipatory fear. Over the years, we’ve found that a sort of self-quarantining is always the safest option even if we can’t or shouldn’t always choose it.
In some ways, Titus’s autism has made our entire family more introverted—even the extroverted ones! Quarantine has helped me to see that our family almost always forgoes a certain type of community. I’m not sure it has a name, but it’s the relaxed type, the hanging out type, the in-the-halls-after church type. We forgo this type of relaxed community, because there is a layer of distraction in our every interaction: we are on the lookout for an outburst that will distress everyone around, warrant a quick exit, or require a contingency plan. Perhaps this relaxed type of community is what our friends are missing so much and what makes them yearn for a return for normalcy. Perhaps social distancing wasn’t a shock to our system because it felt familiar. Maybe relief is our response to being freed from the obligation to be on alert—and we didn’t even have to weigh the decision.
Mandatory quarantining relieved us of heavy anxiety. Our son feels it, because transitions and social settings are the main source of his anxiety. With the clearing of the schedule and the help of his teachers and staff in cobbling together a simple routine, we have been amazed to find that he is calmer than we have seen him in years. Our whole family feels it.
I recognize that not all our friends in the special needs community had the same experience of social isolating we did. For many families, this was a nightmare. But for us, and perhaps for other families affected by autism, there was a special grace in this season that we want to receive with gratitude. God has unexpected ways of giving rest! Physically, we’ve received the extra sleep from days that didn’t start before 6 am; physiologically, we received a reprieve from fight or flight; emotionally, we received the time to talk and debrief; spiritually, we had extra time to open Bibles individually and around the table; mentally, we were able to rest from juggling a schedule and creating contingency plans; financially, we receive the absence of paying for respite hours and activity fees. For us, this season isn’t normal, but it is grace-filled, and our desire is to receive it as the gift it is and then emerge ready to re-join the struggle that is our normal.
We will rejoin that old normal. We will push back against the isolation that being part of a special needs family pushes us toward, because we love people, we love our church, and we love being a family in ministry. But even as we push back into community again, we’re emerging this quarantine season with a realization that all that pushing can leave us depleted. Once this is completely through and fully normal schedules resume, perhaps we will have a taste for wanting less as a society. On a hike, one of our daughters commented, “If we are too busy for this, then we are too busy.” After coronavirus, we may opt for that hike or walk instead of another extra-curricular. We may realize that an extra fifteen minutes with multiple Bibles open next to bowls of cereal is precious and not cut the morning so close. We may realize that kids and teens do indeed do better with ten hours of sleep and work toward that end whenever possible. Hopefully, we’ll keep our eyes open for those unexpected ways that God gives us rest.
The Glorious Hope video conference is for church ministry leaders and volunteers who understand the value of individuals with disabilities and want to create an inclusive and inviting culture that meets the unique needs of people with disabilities and their families. Dan Darling, Sandra Peoples, and Alix Carruth explore how the gospel values people with disabilities, help ministry leaders address specific challenges, and cast vision for the joy and possibilities of life in a special needs family. Learn more and order here.