By Katy Kollar, Parent; Anderson Center for Autism
Considered the founder of modern nursing, the “lady with the lamp” illuminated the path for all in her care, and countless people who’d become nurses in the years thereafter. Although Florence Nightingale passed away in 1910, I’m pretty confident that her signature spirit of empathy would’ve provided healing light for so many when the Spanish Flu pandemic hit less than a decade after her death.
How come I’m so confident in that, you ask? Well, because my son has been the direct benefactor of caring nurses who lead with light as well, especially as we’ve navigated the challenges of the Covid-19 pandemic over the past year. It has never been more clear to me that people who go into nursing share a genuine desire to support people through the darkest times – even times as dark as the ones we’ve been living through recently. Yes – here we are, over 100 years after Florence Nightingale’s presence helped countless humans, and we see her timeless spirit come to life daily through the team at my son’s residential center, Anderson Center for Autism.
Owen has lived at Anderson for eight years now. Any parent who’s made the painful decision to enroll a child with autism in a full-time residential center knows that trust is everything – trust in the organization, trust in the therapeutic and educational practices, trust in the safety protocols, and most importantly – trust in the people….. because we depend on them to light the way.
When Covid-19 hit, parents of those with special needs had to trust those caring for their loved ones in a whole new way. And finding any light was hard. Really hard. But we found it all around us, especially in the hearts of Owen’s nursing team.
While the word ‘unprecedented’ has certainly become a bit overused and cliche at this point, there’s no other way to describe what we’ve seen from our healthcare professionals. They had to organize all kinds of guidelines and protocols while learning about a novel, highly contagious, and deadly illness. They did all of this while simultaneously brightening the lives of all whom they serve, despite the ominous skies that hovered overhead.
I caught up with Gina Williamson, Director of Health and Related Services at Anderson, who reflected: “I had been keeping an eye on Covid-19 before it came to the U.S., and was, of course fearful – wondering, what will we do? I realized we had to step up to the plate and get ready for it when I learned that there were cases in nearby Westchester County, New York. So we did. Our team did what all nurses had to do; we researched, learned about the illness and how it presents, and worked together. We assessed protocols and activated them. We implemented all kinds of practices to ensure cleanliness and to figure out how we’d care for anyone at Anderson who might become infected.”
She continued, “We had to ensure we had enough swabs in our possession. We had to assess what our testing capacity looked like. We had to figure out how we’d rule out other illnesses to determine if Covid was a possibility. And we had to consider this all in context of the fact that many of our residents and students with autism struggle to communicate. They don’t all have the ability to articulate what they’re feeling – so we don’t always know for sure what the symptoms are. Autism, and other disabilities, add another set of challenges to an already difficult situation.”
I consider a day in the life of Gina and her team, and I’m in awe. They had to get mask-wearing practices underway while they were also building their own infrastructure for the pandemic. They were training fellow staff, communicating with the health department and community partners, and trying to give parents, residents, and students much-needed peace of mind. All while likely worrying about their own health and making extraordinary sacrifices to safeguard the well-being of others.
But they did it. With warmth. With kindness. With exceptional skill. With a shared commitment to Anderson’s mission of “optimizing the quality of life for people with autism.” Even amid a global health crisis full of fear and anxiety, they were just like the lady with the lamp, Florence Nightingale, illuminating the path for everyone.
Owen, of course, had grown accustomed to this level of exceptional dedication from the nursing team. Among all kinds of achievements since he started Anderson, he’s progressed dramatically when it comes to how he responds to receiving any kind of medical care. This is because of the unwavering support he’s received, and their deep empathy, which has always been a light for him. When our beloved pediatrician retired, we weren’t sure what to expect as we started at a new practice. We travelled 45 minutes each way to see Dr. A., who would give Owen a shot of antibiotics because he knew he would not tolerate liquid antibiotics–even if they tasted and smelled like bubble gum! To get his bloodwork done before he went to Anderson, it took 5 people to hold him down. When he was younger, he would get papoosed at the dentist–wrapped up like a roll of lifesavers – just to get through the appointment. He would hang onto doorways. Eventually, he was too strong for me, and my husband would have to take off work to get Owen to the doctor.
But the team at Anderson addressed and resolved Owen’s “resistance” (to put it nicely!) to visit the nurse. How did they do this? They looked at things from a different angle – from his vantage point. That’s empathy in action. And that’s what leads to the light he needed. Rather than having him report to the nurse’s office for a blood pressure or ear check (he has a history of ear infections), they started having him casually stop by to deliver mail or to do something unrelated to his ears or arms or nose, making him feel comfortable and safe. Their instincts and intelligence blew me away. And this is an example of how they operate all the time.
That same ability to meet the residents with autism where they are has allowed them to effectively deliver care throughout Covid-19 as they’ve checked temperatures, helped residents understand how to stay physically distanced, and ensured that all are taking proper precautions to prevent spread. Again, they do this by meeting the people they serve where THEY are – which is what empathy is all about. This is what it means to truly lead with light.
It’s always been this way for these nurses. Owen has a history of enduring partial complex seizures, one of which was quite serious and required that he be transported to Westchester Medical Center. His residential coordinator, worried that we wouldn’t get there in time, met my husband Kevin, Owen, and the helicopter there. I am sure Nurse Gina can explain it better than I can, but Owen’s pulse/oxygen level dropped, and on this trip to Westchester Medical Center, he had to be intubated.
The thing is, even through major medical issues like seizures, and fears of what a global pandemic could mean for residents of Anderson and similar programs, I knew that with the nursing team, he’d always be in good hands. I;ve always trusted them implicitly. And Owen does too – because he knows intuitively that they’re truly empathizing with him. That they will be sensitive to his needs. That they try to walk in his shoes as they care for him so that he will feel comfortable and safe.
Bottom line: he feels the light coming from their hearts. We all do.
The pandemic, which I know has been so hard on all of us, was especially hard when the campus was locked down. I got a very surprising phone call one afternoon that Owen was having a telemedicine appointment with the neurologist and afterwards handed the blood draw bag to Nurse Mary. He didn’t need blood drawn at that visit but he settled for a tourniquet tied on his arm. A few weeks later on another visit to the nurse, Owen handed Nurse Mary the scope for his ears–he had a double ear infection!
At long last, we’ve seen a collective sense of gratitude this year for the extraordinary humans who go into nursing and other healthcare professions. But I’ve seen their goodness for years. And over the past months, I’ve seen them share their light more brightly than ever at a time when we needed it most.
And when you have a child with autism, you appreciate people like Gina and her entire staff who lead with that kind of light just as Florence Nightingale did. Like the Lady with the Lamp, they’ve literally and metaphorically helped us walk through some of our darkest days.
And I think I speak for any parent of a child with autism when I say that we are infinitely grateful to have those lamps in our lives – not just through the health crisis, but every single day.