The superhero honour belongs to parents of challenged children
We need to simply acknowledge and keep in mind all the heroic efforts many families have made during COVID-19 in caring for their children with disabilities
“It’s not the easiest, but we are doing OK.”
“It’s obviously different, but we are managing.”
“Not going to school has been the greatest challenge for my child and being both parent and teacher is hard.”
I have worked from home the last two months, connecting with parents of my pediatric patients from a distance.
I may have a brief interaction with the child if it’s a video call or hear them in the background over the phone. But mostly I’m listening to parents and caregivers, which is a large part of what I do in my clinical practice. I work with children and youth with challenges in their development and behaviour, and the shutdowns in response to COVID-19 have further created a divide between the needs of their families and what our system has to offer.
As our attention has turned toward flattening the curve, the voices of these families are buried in our discussions of resource allocation and ethics of care.
Yet, many of these parents answer my query of how they are doing with a certain contentedness captured in the quotes above.
The resiliency these families exhibit has always stood out to me, and at a moment such as this, when acute and urgent care trumps the needs of the most vulnerable in society, they continue to demonstrate the ability to withstand the added demands of caring for a child with a disability.
Many families are grateful that we are still reaching out at a time when many staff have been redeployed to other areas of our health-care system. Yet while we are able to connect with some families, there are many others whom we cannot reach. Those families haven’t called and only a few are showing up in crisis to our emergency departments. In a very general sense, it is likely that the families who are doing “OK” are the ones that have some time to connect for a check-in. Yet we continue to hear stories through the news and social media of many individuals and families that aren’t doing “OK.”
It is with the above in mind that parents and families should share the recognition of the superhero mantle that is constantly being directed to us as health care professionals. We are simply doing our jobs. They are doing much more during this lockdown, and their effort is not glorified.
As we get back to easing restrictions in the delivery of health care and other sectors such as social services and education, we need to simply acknowledge and keep in mind all the heroic efforts many families have made during COVID-19 in caring for their children with disabilities. There are undoubtedly others who are caring for the elderly, the homeless, newcomers, refugees and those with mental health challenges.
In the decisions that lie ahead, we should carefully think through how we will avoid widening the gap between those who are “OK” and those who are not.
Our systems are fraught with challenges in helping the marginalized, and while COVID-19 has presented us with an opportunity to be creative and more collaborative, we must not forget the end user in the world that emerges after the current situation settles. Like you and I, the end user is a fellow human.