Back in March when our communities locked down, one of the first things I did with my kids was go outside. Not to stores or playgrounds, just around our neighborhood. We lived in that house for almost 10 years at that point, but we hardly went beyond our backyard. If I’m being honest, I was afraid to.
When you have a child with disabilities that aren’t visible, people are quick to judge. His behavior can be erratic; he can come off as overbearing, intrusive, rude, undisciplined, or defiant. And while my lack of direct intervention for less serious outbursts may appear that I’m “letting him get away with” something, it’s actually a part of our de-escalation plan that we’ve spent years fine tuning with the help of mental health professionals. And it works.
I used to try to help others understand mental health in children, but quickly realized that most of my attempts were falling on deaf ears. I was told I was making excuses, being too easy on him, and that I should punish him by any means necessary until he learns who’s in charge. Never mind that I have two other children who live in the same house, receive the same parenting, and who act completely different. His behavior is clearly my fault.. it’s always the mom’s fault.
I’ve made many difficult decisions over the years about who we allow into our lives, who we don’t, and who we limit. Setting boundaries with others has lessoned the hurtful comments and well meaning suggestions to a point, but judgement is still everywhere.
When I was pregnant with my third child I took my older two on a walk to a playground, about a mile away from our house. My son (4 at the time) being the loving and affectionate sensory seeker that he is, saw a little boy, about 18 months old, and tried to give him a hug. The boys mom wasn’t happy about this and began to yell and threaten me. I won’t repeat what she said, but it was enough that someone called police.
There was the dad at the playground who screamed in my face for letting my kids climb (yes, climbing, at a playground.. who would’ve thought), the woman at the zoo who said if I let my son ride the train after the way he was behaving in line I was raising an entitled brat (he was overstimulated and was fine once we were on the train), the elderly woman who lived on the next block who asked me if my son was “the R word” (she used the actual word), the other neighbor who asked if he was autistic after knowing us for 10 minutes, the mom at the grocery store who said to her child, “You don’t act that way, you’re better than that” as I was fireman carrying my son out; every single parent at my kids school who judged, yelled, avoided, harassed or talk about us behind our backs, and the people at our church (when we went to church) who would hand me books and articles with some of the most disgusting, manipulative parenting advice I’ve ever seen (rich, right?). And of course, the stares. If you’ve ever had to drag a kid out of a store or off of a playground mid-tantrum, you know the stares. There are too many of those to even remember.
The first time we stepped outside back in March, I distinctly remember how quiet it was. There were no cars, despite living near a busy road, and no people. It was early evening but the sun was long gone (thank you northern hemisphere). It was cold outside, but I could feel the anxiety melting off of me. No one would judge us out here, because no one was there.
That night turned into a near nightly tradition for the kids and I, that we kept through selling our home, buying a new one, and living in hotels in between. Almost every night we went on walks, climbed trees, jumped in leaves, splashed in puddles, had honest conversations, and let our guard down. We could relax, be ourselves, and breathe.
As I think back over the past nine months of quarantines and social distancing, I think about everyone struggling with being alone so much. It’s hard. I know it’s hard. I’ve been doing it for the better part of a decade. There are no babysitters for date nights, no friends to confide in, no one to meet outside of the home, no one to call to calm you down when you spot the helicopter parent at the playground and you fear they’re going to come after you and your kid, and no one to reach out to when they do. There are no clubs or teams for my kids, because most people don’t know how to interact with a child with invisible disabilities. And now, there are no schools for connection and support. Last school year reinforced what I found out years prior — families like ours don’t belong there. We homeschool now, and likely will continue to do so.
This pandemic seems to highlight all the problems with society that have been brewing under the surface for decades, but I have yet to hear anyone raise concern for those who are otherwise shut in. The ones with disabilities, the ones who have struggled to be accepted, and can only pick themselves up so many times before the thought of trying again becomes unfathomable. Maybe it’s because no one realizes that we exist. Maybe people prefer it that way.
I recently had a coworker tell me I’m anti-social, but that couldn’t be further from the truth. I want to socialize, to see people, to go places, to have a regular job where I’m interacting with people and the work is meaningful; I want my kids to know what it feels like to be on a team, to belong. It’s not that we haven’t tried… no one is willing to give us a chance.
Yes, I want this pandemic to end. I feel the toll it’s taking on loved ones. I know the pain of isolation because I’ve lived it for longer than most can comprehend. I’ve lost four people this year, two to COVID. I wouldn’t wish this on anyone. But once it’s over… then what?
I’d like to hope that we, collectively, will walk away with a desire to better ourselves and strengthen our communities; to find the lost, heal the broken, serve the underprivileged, talk less and listen more, empathize, and become selfless in our words and in our actions. History, however, tells me not to hold my breath. The only thing I know for sure that will happen, is that we will continue our walks, under the cover of dark and the safety of solitude. And I hope that some day, someone looks back and remembers how they felt during the times of social distancing, and gives us a chance.
