When the pandemic is over, my family won’t go “back to normal”

Parenting

If missing birthday parties or not going to the movies really bugs you, remember that for parents of kids with disabilities, it’s always been this way.

In the beginning of the pandemic, almost one year ago (!!) we were all ready to stay home, buckle down for a few months, and take it as an opportunity to pause and do some self-exploration, then get back to life as usual. But as time passes, we’re weary and exhausted. Life is heavily restricted. You might be one of those Canadians thinking that it’s about time we got back to socializing at our kids’ hockey practices and enjoying the occasional indulgent dinner out. A polar vortex winter without travelling to a sunny vacation spot is proving to be a bit much. The worry over our children’s mental health and social development is really sinking in. Will they ever go to another birthday party or invite their friends for a sleepover? Will they ever get to play a team sport? If the kids need therapy, can we afford it?

Families are facing economic stress and moms, in particular, are sacrificing their careers when daycares shut down or schools cannot provide a safe education for their kids. Will the restrictions lift enough that relatives might drop by and offer tired parents a much needed break?

This relentless version of parenting certainly isn’t what any of us asked for when we signed on to have kids. But pandemic parenting is actually a whole lot like disability parenting, and these are questions parents of kids with disabilities confront every single day, regardless of the coronavirus. We’ll be dealing with many of these same restrictions long after COVID-19 is over.

One of my three kids is autistic, and for families like mine, we 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 feel like the right fit) are just facts of life 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 inaccessible 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. Access to typically joyful kid things like movie theatres and arcades are special outings that need to be mapped out and planned well in advance. It’s a long list of things we can’t easily or safely do, and next to nothing is spontaneous.

For kids with physical disabilities or life-long immune issues, their health can be extremely fragile, even without the threat of a pandemic—a common cold can be harmful for some kids. Many families avoided busy malls already, and were fearful of germs being picked up at the grocery store or from people coming in and out of the home. It was, and is, a constant stressor.

a family of five walks away from the camera on a tree-lined path for a story on disability parenting during the pandemic

Photo: Tracey Jazmin

I get it—the longing we feel to “get back to life as we knew it” is real for all of us. 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 will continue to face long after it leaves.

My son is eight now, and halfway through 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. Successes I’ve seen my friends’ children achieve easily 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 outline 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 parent or person 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. 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 firsthand how difficult extended periods of restrictions and isolation can feel.

From one mom 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 is a mom of three with one child on the autism spectrum. She is passionate about autism awareness advocacy, and creating a more inclusive society. Find out more about Kathy here.

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