I have heard complaints about “staying home.” I’ve heard how people are having to break plans and rearrange their lives. I’ve heard people discuss how they’ve had to think twice before going to the grocery store, the park, even a doctor’s appointment. I’ve heard about people skipping vacations and changing flights and missing restaurants.
And I want you to know, I understand.
I understand because I have a child with severe autism.
He’s ten and he’s a great kid. He laughs easily, he loves books and dinosaurs and swimming and jumping on the trampoline in the backyard and squeezes. He’s an expert at pretending not to pay attention all while waiting for you to not be paying attention. He loves big and we love him.
He’s also not fully potty-trained and can easily become overwhelmed by large, busy crowds, loud noises, too many lights or colors or smells, or the way the wind blows. Sometimes to deal with this overstimulation, he gets aggressive. He has been known to pinch and bite and throw things. (And for a kid who struggles with fine motor skills, when he decides to throw something at your head, he does not miss.)
We’ve been “staying home” for most of his life.
We’ve had to break plans and rearrange our lives, our schedules, our home even, to allow for situations that just won’t work for our son.
We think twice about every place we go. If we’re invited to a friend’s house (a rare occurrence), do they have lots of knick-knacks and breakables? Do they have a fenced-in backyard? Will they understand if we have to leave early or even cancel at the last minute?
We’ve left grocery stores (once, after a tragic spaghetti jar accident), changed doctors, and left parks because other people were looking at him strangely.
We’ve gone on a few family road trips or a weekend at a cabin, but flying to Disneyland or spendy vacations aren’t happening. He needs weekly therapy and that’s not cheap. And restaurants…Well, that’s a luxury too. My husband and I have never—in 14 years of being parents—been away together for even one night.
“Staying home” can be isolating and depressing and feel heavy and overwhelming. It can make you go a little crazy and wonder when life will go back to normal. But, thankfully, for most of you, life will eventually go back to some sort of semblance of what it was before.
For us, “staying home” is our normal.
We do the best we can when we can where we can. We find the parks that aren’t very crowded, visit the zoo on Friday evenings before they close, hold on tight to relationships with a few, very close friends. We visit a cabin in the woods every summer. We have one go-to restaurant if we want to splurge.
I’m not saying this to make you feel guilty or to make you pity me. Although I will admit that I’ve thought once or twice that if people worried about autism even half as much as they’re worried about COVID-19, maybe our kids could get more help and resources, maybe the constant anxiety I feel about our sons’ future would lessen some.
I tell you this for perspective.
I tell you this so that you might think about other people who don’t have the luxury of doing anything but “staying at home.” Maybe they also have children or family members with special needs, maybe they are caring for an elderly parent, maybe they’re fighting cancer or maybe they’re just afraid to leave the house because of mental illness.
The next time you feel frustrated over the inconvenience of staying home, please understand this will end for you eventually.
And then think about the people who don’t have that option.
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