Nobody expected to start a new year, much less a new decade, with a pandemic. But here we are, months later, still adjusting and reacting to a global health crisis no one could have ever anticipated or imagined.
COVID-19. Social distancing. Wearing gloves and masks. Hand washing for 20 seconds. These are some of the terms that will be forever sown into our collective consciousness.
The coronavirus pandemic has definitely affected and changed aspects of all of our lives. There’s also a real possibility we will never return to the normal pre-COVID-19 lives we used to lead. And as I write this article, I’m not sure what the future will bring. As we all experienced firsthand, life can change in an instant.
While reflecting on the initial three months of the coronavirus, I realized that dealing with the pandemic has allowed me to see some things from a different perspective. And, in a strange and unexpected way, it has permitted me to gain additional insight into the lives of special needs individuals and their families.
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Lesson One: Nobody Likes Their Routine or Schedule Disrupted
Who knew? Routines and schedules—they’re not just for our kids. We need them just as much.
The coronavirus pandemic changed not only our lives, but also the routines, schedules, and structures we all depend on. Due to the “shelter-in-place” order, everyone, except essential workers, was required to stay home. Almost everything was closed. A majority of large corporations, small businesses, restaurants, houses of worship, gyms, beauty salons, barber shops, shopping malls, and other non-essential businesses were suddenly inaccessible.
The necessary structure, routines, and services for special needs individuals were severely disrupted, causing additional stress and responsibilities in our households. In most cases, special needs children lost access to school and academic programs as well as physical, occupational, speech, and behavioral therapies. Many adults with disabilities weren’t able to attend day habilitation, vocational, and recreational programs.
Isolation and anxiety set in very quickly. The loss of predictability in everyone’s life was disorienting. Our kids couldn’t attend school or their adult programs; we couldn’t go to work. They missed their classmates, teachers, and therapists; we missed our co-workers, family, and friends. Some people worked from home; some kids used remote learning. Nothing felt the same. In other words, the rug was pulled out from under us.
Together, parents and their children experienced a rollercoaster of similar emotions including fear, confusion, anger, sadness, loneliness, and depression. Everyone had different ways of expressing these emotions through their behaviors. And some of us behaved better than others, including adults.
So our kids weren’t on their best behavior, but who could blame them? If we couldn’t fully process all the coronavirus stuff we were dealing with, how could they? Our sons and daughters may have been more aggressive or withdrawn than usual. They might have had more meltdowns due to all the disruptions in their lives. And sadly, some may have regressed and lost invaluable academic, social, and other critical skills. But they’re only human and they’re not perfect. Neither are we.
In our case, we could express our thoughts and feelings. Even though we didn’t like the pandemic restrictions, we understood they were implemented for our safety. We had to do our part to stop the spread of the coronavirus. This was something the majority of our kids couldn’t understand or process. Their world, as they knew it, immediately stopped. Our world just kept spinning, which made me think maybe our children feel like this most of the time.
Lesson Two: Challenging Times Create “Teachable Moments”
It’s funny how things happen. Over the years, my cousin Diane has frequently asked me to explain some of my son’s behavior. I vividly remember the time when Lorenzo started school. Diane couldn’t understand why he got so upset when his bus driver, matron, and route were unexpectedly changed in the middle of the school year. She’d say something like, “Seriously, it’s only a bus ride.”
During the pandemic, Diane called and described the “meltdown” she had because she couldn’t go inside Starbucks and have her Caramel Frappuccino. I had to smile. It was like the end of the world for her. Apparently, she always drinks her coffee while talking to her co-workers at the Starbucks near her job. And now that she works from home, Diane can’t see her girlfriends and discuss all the office gossip.
“Diane, it’s only coffee. Buy a cup from the Dunkin Donuts near your house,” I said. “It’s just not the same thing,” she replied with a bit of sadness and anger in her voice.
I took this opportunity to highlight how unsettling an abrupt change can be. I reminded Diane of Lorenzo’s bus meltdown years ago. I explained how his trip to school “just wasn’t the same” with the new staff and route. And I think now, she finally gets it.
Another teachable moment came along as social distancing made me more aware than ever of my personal space. I became very aware of people “occupying” my space and disregarding the CDC recommended six feet guidelines.
These experiences made me think about how many special needs individuals may feel when someone gets too close to them. Unfortunately, a lot of people don’t realize how important it is to acknowledge and adhere to those individuals’ personal boundaries. If I felt uncomfortable when others “entered my space,” I can only imagine how they would respond if approached by a person they didn’t know, who wanted to interact with them.
Lesson Three: Special Needs Parents Are Essential Workers, Too!
Throughout the pandemic, we’ve publicly recognized our incredible frontline workers as heroes. They include doctors and nurses as well as healthcare, transit, grocery, postal, and other essential workers. All continue to work tirelessly to keep us safe and healthy during this difficult period. We’d be lost without them.
I’d also like to acknowledge some other remarkable heroes who’ve shown great resiliency and determination in these uneasy times: special needs mothers and fathers. During these stressful periods, there’s nothing better than getting support from those who understand your situation best.
And after speaking on the phone or having Zoom sessions with some friends who have special needs children, I’ve gained even more admiration for these amazing parents. I know they’re exhausted. Their houses may be messy, and most probably they don’t know what day of the week it is anymore. But their children are safe and well-cared for.
More importantly, the love and dedication for their kids have never been more on display than during this pandemic. Even in the midst of dealing with their own fears, anxieties, and concerns, these parents provide a safe haven for their children. They’ll place their own personal and professional needs on the back burner to make sure all their kids’ needs are met. And if that means taking on the additional role of Special Ed teacher, ABA therapist, and 24/7 caregiver, they will find a way to do it.
Special needs parents are “hidden heroes.” These moms and dads earn this distinction every day they step up and undertake the challenges of raising a child with a disability. They deserve a medal for courage.
And just as we visibly acknowledge our frontline workers by placing “Heroes Work Here” signs in front of hospitals and other healthcare facilities, I wish I could put a “Heroes Live Here” sign in front of the home of every special needs parent. They definitely deserve it!
There’s No Crystal Ball
No one can say how long the pandemic and its after effects will be with us. But the more science advances, the better chances we have of meeting the COVID-19 challenge today and preventing future outbreaks of similar viruses. So, it’s encouraging that the medical and scientific communities are studying and discovering more about the coronavirus every day. Like them, we have to take it one day at a time.
The pandemic changed a lot of things in our lives, but the one thing it couldn’t affect was the powerful love and devotion we have for our families. And in these unprecedented times, that’s a foundation we can stand on.
This article was featured in Issue 109 – Attaining Good Health.