Caregiving in a Pandemic: When the Professional and Personal Collide
By Sheilah M. Gauch, LICSW, M.Ed., Principal of Dearborn Academy
When schools first closed and we were all sent home in March, I initially stayed grounded in how I would support leading a school through this time. I am also the chair of my local Special Education Parent Advisory Council (SEPAC), so I likewise invested my time outside of school in understanding our district’s plans and how they would support learners.
As days turned to weeks, I started to feel my anxiety about my own children’s stress in navigating remote learning creeping up on me. Both of my children just returned to their community school this past fall after years of being in out-of-district placements. Both children were adamant about being in their community school – and the leap was a scary, anxiety-producing one for us as their parents. Fortunately, they are well supported at their local school, with caring special educators. However, what would happen now in the pandemic to all of their hard-fought progress?
At Dearborn Academy, I lead our staff in discussing the neuroscience of anxiety. We talk about the very normal and biologically-driven stress reaction we all have at different times. When we experience a feeling of stress or anxiety, our body responds with a fight, flight or freeze response. I provide staff training on what this stress reaction looks like for caregivers of students with complex needs. Our caregivers come to us after years of being in a protracted stress response as they attempt to support their children and help them as students. We are called to understand their journeys. (For more, see an article I wrote on the needs of this group.)
Caregiving in a Pandemic
I can speak to this, not only because I am a professional having spent an entire career working with caregivers in support of children with complex needs, but because I have personally spent the last 10 years caretaking two children with complex needs.
Over the last decade, I have developed a very protective response that my body has learned as I have tried to manage advocating and caring for them. When an anxiety response is triggered in me, and those chemicals flood my body to prepare me to fight/flight/freeze, I often end up with a combination of fight followed by freeze or flee. When I perceive either of my children is in danger or in pain, I need to fix it. Right away. I will often launch into advocacy mode and start making calls, writing emails, or even showing up in person to advocate for their needs.
Educators who have worked with me as a caregiver have gotten that email or a series of calls asking them to engage in next steps to help one, or both, of my children. This response had become so innate in me, that it lay at the root of my motivation to return to school and earn my master’s degree in education and earn my principal’s license. I sought to be fully armed with information to advocate for my own children’s education. When I can’t “fix” things right away, and the anxiety continues to ratchet up, I find I want to curl up like a pill bug or just run away to avoid how bad it feels.
After years and years of dealing with chronic stress around my children’s acute needs – advocating for new schools, insurance coverages, new clinicians/providers, in-home services, hospitalizations, how to support their anxiety, how to navigate social interactions, how to help them make friends, how to ensure they aren’t ostracized or kicked off sports teams (the list could go on and on) – I barely even notice when I engage in what I now call an “anxiety-based trauma response.” I also refer to it as a “hit my knees moment” when I blindly react to “save them” and I realize that it is my own learned response that may no longer be needed as they grow healthier and more able to advocate for themselves.
Navigating the Unknown
When the pandemic hit, I did not account for my anxiety response to having my children home and struggling to access the curriculum as normal teens have and do. I am a school leader. I should be able to manage this, right? When my children slept until 1 p.m. and missed their Zoom calls or when they burst into my Zoom meetings frantically ranting that they could not “do this anymore,” it was too much. They were going to fail – everything!
I will share openly, that I lost my professional bearings and my body remembered the fear of them struggling and in pain. In an anxiety haze, I started my frantic emails and calls to their educators. How would people help? How quickly? What supports were they offering? I could not bear to watch them regress. Not after I had fought so long and hard for them to get the services they needed.
I was in the oddest place possible – a caregiver falling back into a very predictable anxiety response – while leading a team of educators through truly one of the most challenging times I have ever experienced professionally. And this is while also supporting the special education caregivers in my community on how to advocate for their own children’s needs from our district.
At times, I have felt so conflicted as a caregiver as well as a provider. I understand the true trauma and pain of watching your child regress. Instinctively, I wanted to fight to have all the things, as quickly as possible, so my children (and others) would not lose momentum, or regress, and not re-experience that pain.
Then I would get on my Zoom calls, and work with truly amazing, brave heroes in education. I would listen as they expressed their own worries of teaching from their living rooms, how they would negotiate their own children while making Zoom calls to students, how they would navigate technology that was new to them, and most importantly, how they would ensure their students didn’t regress. I watched them dig in and work long hours, trying innovative techniques, and being open and vulnerable to change. I realized that these amazing educators were also fighting/freezing/fleeing through their own anxiety response to being in the middle of a pandemic and shifting all of their practice to accommodate the most vulnerable student population.
After work, I would get on calls with our SEPAC board, or field calls from other community members, and listen to caregivers just like myself, scared about how their children would fare in this unprecedented situation. This was truly worlds colliding for me. I knew from my work at Dearborn Academy that our community educators had to be feeling the same thing ours were, and I knew as a caregiver that caregivers were experiencing acute stress and anxiety watching their children struggle trying to learn at home.
What I can say with certainty is that these times are so stressful and hard. What I can also say is that the only way through this is together. Staff at Dearborn and members of my community’s SEPAC board hear me repeat over and over that we have to link arms as a team and build a great big life raft to help children and their families.
One person bobbing up and down in the ocean is doomed to get tired quickly and go under. But a whole flotilla of humans working together – well, we can last for a whole lot longer and problem solve getting to safety as a group.
Over the last 20 plus weeks of this pandemic (yes, it’s been that long) I have gained a far more holistic understanding of the importance of building bridges to understand one another’s perspective and experience. I realized that, for me, my body literally reacted on its own to my fear for my children. However, if I stayed in that place, I would not be able to support the educators I lead and the caregivers I work with in my own community. I had to call on all the coping skills I have learned (running, meditation, time with family/friends) to ground me and then look for a way through together. While I knew this prior to the pandemic, I can say it has been highlighted more than ever now.
Over these past many weeks, I have fought to try to build these bridges. It’s not just me, however, I could never do this work alone. I linked arms with other educators and caregivers, and we did this work together. In my hometown’s SEPAC, we consciously decided to link arms with our district administration and worked together to communicate how to help our students in special education. We hosted online meetings and had over 84 people attend — an unheard of response for our group! We had difficult, but necessary, conversations on how best to help students.
And at Dearborn, we created caregiver support groups and ensured that our caregivers had weekly access to clinicians to discuss their concerns and questions. We spent hours as a team processing how to support students in their homes – with caregivers who, no doubt, were reliving their own trauma responses trying to support their children’s needs. We challenged each other to lead with empathy and meet each family where they were.
Through all of this what I have learned is:
As Educators we are called to link arms with our caregivers. We must respond with empathy and compassion to our caregivers who are coming to us with their student’s needs. We must be transparent in how we move through this challenging time and ensure they know we care about them, and most importantly, their children.
As Caregivers we are actually called to do the same thing with our educators. Link arms, respond with empathy and compassion, be transparent about what our children’s needs are, and ensure they know we care about them.
We will then be exceptionally kind to ourselves and acknowledge that this is really, really hard. We are all fighting our own daily battles with our own stress responses and fears. We will all get through this together.