April is Autism Awareness Month, a time when the significance of autism in our lives is especially pronounced. As my family enters its third week of quarantine, I’m acutely aware of the challenges that come with having a child on the autism spectrum. The extended time together has amplified our individual personalities, quirks, and challenges, particularly with communication, self-regulation, and transitions. Above all, it highlights the profound impact autism has on our daily lives.
My eldest, Max, 18, has an autism spectrum disorder that results in considerable cognitive, speech, and motor difficulties, alongside behavioral issues and epilepsy. At the outset of the quarantine, I began drafting an essay titled “How My Special Needs Child Prepared Me for This Pandemic.” I quickly abandoned that idea, realizing that no prior experience could equip any of us for this unprecedented situation. A friend, whose 16-year-old daughter with autism is struggling with anxiety and self-injurious behavior, recently reached out to me: “How are we going to manage this?” I honestly don’t know how to respond.
While healthcare professionals nationwide risk their lives to protect others, and local community members rally to support them with meals and supplies, my primary focus is to keep Max calm and help him cope with his frustration while his siblings navigate remote learning. When my sons first learned they would be schooling from home for an indefinite period, their immediate concern was how to accommodate Max. They are well aware of the disruption that living with autism brings to our household.
I empathize with their anxiety, just as I deeply understand Max’s confusion about the current situation. He has no concept of what a “pandemic” means or why his school is closed. On the first day of cancellation, I explained that the school needed to be cleaned to keep everyone safe. As days turned into weeks, I continued to clarify that a virus was making many people in New York sick, prompting his teachers to advise everyone to stay home to hopefully return to school soon. “When?” he asks, and I have no answer.
Like countless parents across the nation, I find myself navigating this uncharted territory, explaining the inexplicable while trying to reassure my children. Although this may feel foreign, it strikes me that we are revisiting familiar challenges. As my sons mourn the loss of their routines and spring sports, I find myself echoing the sentiments that special needs parents often share: “I understand this isn’t ideal. It’s not what we envisioned, but there aren’t many alternatives – so let’s make the best of it.” My boys have heard this before; it provides some comfort, but also frustration.
As we all scramble to regain our footing, we are reworking the routines upon which we rely. Like everyone else, we yearn to return to a sense of normalcy, but our “normal” has never been conventional. Max has always needed a structured daily schedule to navigate his days. Now, we must dig deeper to identify what brings us joy and motivation. Meal times, walks with his service dog, Charlie, and the joy of reading are crucial to our routine. In the absence of our beloved library, kind-hearted friends have been leaving books and surprises on their porches for Max to discover, which has become a source of delight in these trying times.
Following Max’s lead, we embrace sunny days and even begin preparing for upcoming celebrations. He marks the calendar year by holidays. During our last trip to the store, amidst people rushing around in face masks, Max deliberated over whether to choose a green or yellow bunny-eared headband. Captivated by the vibrant displays of candy, he was blissfully unaware of the chaos around us. He returned home clutching a blue basket and proudly wearing the carefully selected headband, bringing smiles to his brothers’ faces.
While having a child with special needs may not have equipped me for this pandemic, autism has fostered in us a profound appreciation for the people and moments that elicit joy. We’ve learned that these moments are fleeting, and that nothing, whether good or bad, lasts forever. So, we take a deep breath, make our lists, and hope for sunny days, all while accepting that we must adapt to whatever comes our way, rain or shine.
For more insights on navigating this journey and how to support one another, check out this blog post, and for expert guidance on similar topics, visit this resource.
In summary, the pandemic has posed unique challenges for families with children on the autism spectrum, exposing both difficulties and opportunities for growth. As we adapt to new routines, we embrace the small joys that sustain us through these trying times while recognizing that our experiences shape our understanding of resilience.