ESSAY

ries about our children’s mental health and social development haven’t let up. Will they ever go to another birthday party or invite their friends for a sleepover? Will they get to play a team sport? As parents, we miss socializing at our kids’ soccer practices and wish we could enjoy the occasional family dinner out. We’re seeing our kids withdraw and lash out during remote school. We worry, if the kids need therapy, can we afford it?

Families are facing economic stress, and moms, in particular, have sacrificed their careers when daycares or schools closed down, because they can’t provide a safe education for their kids. For much of the past year, we’ve wondered when, and if, the restrictions might ease enough for relatives to be able to drop by and offer tired parents a much-needed break.

This long list of concerns—this relentless version of parenting—certainly isn’t what any of us expected when we signed on to have kids. But pandemic parenting is actually a whole lot like disability parenting; these are challenges parents of kids with disabilities confront every single day, regardless of COVID. And we’ll be dealing with many of these same restrictions long after the pandemic is over.

One of my three kids is autistic, and families like mine are constantly navigating unforeseen challenges that aren’t in any of the parenting advice books. Dealing with government funding cuts and trying to stay on top of our son’s education options (none of which ever feels like the right fit) are just routine for us. Informal support from grandparents and friends is never really an option for families like ours, due to the intimidating nature of the additional care many of these kids need. Simply going out for dinner or on a vacation is out of the question for many, due to mobility or sensory issues, high costs and headache-inducing logistics.

Even before COVID restrictions cancelled birthday parties all over Canada, a child with a disability often didn’t get to celebrate birthdays with a group of peers, because the party or sleepover invitation was so rare. Outings to typical kid things like movie theatres and arcades need to be mapped out and planned well in advance. There is a long list of things we can’t easily or safely do. Next to nothing is spontaneous.

For kids with physical disabilities or lifelong immune issues, their health can be extremely fragile , even without the threat of a pandemic— a common cold can be dangerous for some kids. Many of these families have always avoided busy malls and been fearful of picking up germs at the grocery store or from people coming in and out of the home. It was, and is, a constant stressor.

Ultimately, being indefi nitely isolated—and feeling forever unseen—is a greater disability than any diagnosis a family could ever receive.

I get it. We all feel the longing to “get back to life as we knew it.” Everyone wants to close this chapter on the pandemic—the disability community included. We all miss the energy of a crowded room or getting wrapped up in the warmth of a hug from a grandparent. But please remember that these are the same desires some families have been living with long before COVID arrived, and we will continue to deal with these barriers long after it leaves.

My son is eight now, wrapping up grade three, but he is just learning how to have a conversation. He struggles to play simple games like Go Fish. He has yet to master how to blow out the candles on a birthday cake or ride a bike without training wheels. Milestones I’ve seen my friends’ children easily reach are still, for us, big wishes far in the distance, and if I’m being honest, this time in my life does not look at all like what I had imagined at the start of motherhood. Following the standard progression of childhood milestones went out the window ages ago.

This isn’t a plea for sympathy. But the hope is that this experience will help open others’ eyes to what it feels like when your plans are derailed and you can’t give your kids the life you’d envisioned for them. We want everyone else to recognize that a disability, in itself, is not nearly as disabling as the structural hurdles we face in society: always advocating for inclusion, fighting to be taken seriously and working to access resources within the healthcare and education systems. We are constantly navigating supports while accepting limitations and challenging the ones we can overcome.

Ultimately, being indefinitely isolated—and feeling forever unseen—is a greater disability than any diagnosis a family could ever receive.

So please, remember this: When the current season of crisis ends for you and your family, use this experience to fuel your compassion for others. Show your child the importance of accepting differences by demonstrating it yourself. Teach them that it’s better to ask questions than to stare in awkward silence if they notice someone who looks, moves or behaves differently. Be kind, accepting and patient with others.

When faced with the choice of inclusion, think about the benefits for all. Slow down and reach out every once in a while, recalling first-hand how difficult extended periods of restrictions and isolation can feel.

From one parent to another, I want you to remember that the pandemic has been your crash course in what disability parenting is like. My kid is just as human as yours, and they are all equally deserving of the most unrestricted, joyful life possible. —Kathy Heath