by Melanie Williams, Freelance Writer • Originally published in Maclean’s and Chatelaine
My son’s journey with loneliness started years before the Covid-19 pandemic. If there’s a silver lining to this pandemic and the restrictions imposed on our personal liberties, it’s that I am learning what involuntary loneliness feels like. Loneliness and the effects of isolation and social distancing are experiences that my son faces in his everyday life. The pandemic has given me the opportunity to better understand my son and appreciate his incredible capacity for resiliency. His strength and willingness to show up and keep trying every day is the most impressive thing I have ever seen.
Born in the middle of the night after just two hours of labour, my son’s arrival is a blur of sporadic memories; my husband speeding through the city, talking on the phone with 911 in case I liberated our child in the front seat of the car. We made it to the hospital and I remember being taken by wheelchair, careening through the hospital corridors, racing to labour and delivery. Moments later I looked down into the face of my son dangling freely between my thighs. A doctor swooped in and whisked my baby boy away. It was fast, exhilarating and it changed my life forever.
Hours later I was sitting in the NICU next to my son sleeping soundly in his oxygen bubble. The day shift arrived and a doctor ascended into the room. Without thought or hesitation, he loudly pronounced this definitely is a ‘Downs baby’. The intensity of this news stunned me but, even after the doctor effectively rattled off the list of deficiencies to me, it never crossed my mind that my son was anything less than a perfect new human being.
Now fourteen years old, my son is bright and energetic. He excels at flipping forward and backwards on the trampoline. He swims three times a week with a club in the city and Butterfly is his best stroke. His spirit is composed of music. Whether he is singing in the backyard for all the neighbours to hear or jamming on his saxophone, printing out the lyrics of his favourite songs or listening to his extensive playlist on his cell phone, music is essential in his life. He’s a pretty typical teenager.
When my son began attending our community school in regular education classes, we started down a road that was anything but typical. The path was fraught with gaping potholes and inadequacies I never knew existed. The school system is not set up for difference, not prepared to handle diversity and not eager to adapt. Yet here in 2020 in the midst of a global pandemic this archaic system has been forced to instantly change and accommodate educating everyone at home experiencing a very different world.
My friends on Facebook post all the time now about the difficulties of being isolated and their exhaustive if not futile efforts to continue schooling at home. Their children who once intentionally locked themselves in their rooms, now cry at the reality of being forcibly sequestered at home. Parents worry about their children being lonely and unable to connect naturally with their friends. Worried about mental health and the very real possibility of depression settling in. School has become a daily chore riddled with problems for parents, students and teachers alike. Instruction has become dependent on an inanimate internet connection. Communication breaks down as screens freeze and instructions are garbled. Students are left frustrated, unable to fully understand expectations.
These types of systemic challenges are old hat for us, however. Your child’s new struggle to fit the current model for education is familiar territory to us. My son has always struggled to fit the ‘one-size-fits-all’ learning environment. Incredulously, our children’s first experience with systemic failure appears to happen in elementary schools when professionals test IQ, slap on labels or deem a child ‘best suited’ to a segregated learning environment. Assumptions about a child’s ability are made and attitudes are formed.
Consequently, I have fought my way into every school year to have my son included, but I have learned that being included isn’t the same as being accepted or valued as an equal. My son has been labeled that ‘Downs kid’ and more often than not, is defined by his disability. School administrations hyper focus on his deficiencies instead of identifying his skills and interests. The idea of putting all the kids with the same coding into the same classroom, makes sense in the ‘one-size-fits-all’ model. This certainly appears to be the most convenient set up for the adults involved regardless of the fact that it may not be a conducive learning environment for the students involved. Similar to what is happening now; students are segregated, struggling with deficiencies in communication and discovering that instruction does not always accommodate the full spectrum of learning modalities.
Evidence of a failing system and continuing isolation fuel frustration and resentment grows not only amongst students but with adults as well. Many people feel our fundamental human rights are being infringed upon. Our ability to move freely in our community has become limited. How we talk and interact with each other has become constrained. Our choice and ability to work or go to school is being dictated to us. How illuminating it is to realize that this is the everyday life (pandemic or not) of people living with special needs. Their ability to move freely, easily interact and connect with others in their community, work and go to school, is commonly inhibited by a lack of accessibility, resources or people’s antiquated attitudes. Are their basic human rights less important than your own? Instead of society being resentful and entitled we need to utilize this new-found empathy the pandemic has uniquely provided us by acknowledging the needs of our most vulnerable and acting in ways that fully supports and truly values all citizens as equal.
The pandemic restrictions have me thinking a lot about the new home school – work environment and in particular the difficulties surrounding communication people are experiencing. My son’s ability to communicate is modest despite a lifetime of speech therapy. His efforts to communicate often go misunderstood. It breaks my heart when others are not able to understand him. He tries and tries again until it’s clear his audience has given up. I see him throw his hands up in the air and drop his head shaking it in disappointment and frustration. He works hard to understand too but often messages get mixed up, the connection is lost, he is left to his own devices and involuntary loneliness creeps in.
My son has a big personality and he has equally big emotions. He is silly and loud, empathetic and compassionate. His concern for others is almost palpable when someone is hurt. He will be the first to slug his arm across your shoulders and ask you if you’re okay. He cares so deeply and longs for connection and needs real friendship, as does any child. But far too often he sits alone in the school hallway eating his lunch and being ignored. Unaware of social nuisances and age appropriateness, my son disregards personal space and talks in people’s faces. Sadly, but not surprisingly, teenagers regularly practise social distancing and my son regularly experiences isolation from his peers. I too, worry about his mental health and the possibility of him slipping into depression.
As kids go back to school and adults return to work, we crave interaction with people again. Observing a crowd and feeling their energy. Reading another’s body language and seeing if their smile truly reaches their eyes. The freedom of not depending solely on the internet to have a class, a meeting or a conversation. Communication that is clear and we feel confident we have been understood. Having lunch with the gang, catching up on each other’s lives and sharing our experiences. We all eagerly look forward to these days ahead when our version of normalcy will resume.
I hope however, for my son’s sake, that his normal will be different. I hope that his peers and teachers, who now have a profound new understanding of loneliness and what my son feels and experiences living with social and communicative challenges, will endeavour to build real connection with him. I hope they try a little harder to talk to him and listen to him more. I hope they sing with him. I hope they think creatively to find ways to understand. I hope they ask him to show them what he needs and that charades erupt in the classroom. I hope they don’t shame him for a lack of social boundaries and instead teach him and model for him what the expectations are. I hope someone regularly eats lunch with him. I hope he is not only included but knows that he truly belongs. I hope all his abilities and gifts will be appreciated and that true friendship will develop through a mutual love of music and backflips.
I am grateful for the unexpected gift of understanding and empathy the pandemic has given me. I am able to see my son with greater clarity. I have infinite respect for him and his ability to be resilient in the face of adversity and loneliness. He endures others’ misconceptions and systemic unwillingness to evolve. He shows up and tries his best even though it’s hard. Striving to communicate despite frustration he continues to look for real connections and to live his best life.
Post pandemic I hope things get easier for everyone. And I hope life is a little less lonely for my son and others like him because when we know better there’s a responsibility to do better and we all certainly know a lot better now.
Melanie Williams is a freelance writer whose work has been published in Maclean’s, Todays Parent and Chatelaine magazines. Her passion for writing allows her to work out the ups and downs of life and to be an effective inclusion advocate. Melanie was born and raised in Lake Country, BC and still refers to this place as home. Currently she resides in Calgary, Alberta with her husband, two children and a small, were-wolf-like dog.