Ten months of non-stop caregiving had left us exhausted. Like many parents of children with disabilities, we relied on the public school to provide support. In March our team of teachers, therapists, learning support staff, and paraprofessionals disappeared overnight. We were left with a laptop and a son who can’t click a mouse pad.
Almost a year later and our school in New York City was still not open. Our fatigue had risen to dangerous levels. Our physical bodies were breaking down under the cumulative strain of daily care for our son. The lifting, feeding tube meals, diaper changes, and wheelchair transfers, had taken a toll on us. Hours on the phone with the Department of Education, email after email pleading for in person services when all that was offered was remote. The one thing we needed had been the hardest to receive during the pandemic: physical help.
Finally, in our desperation, we reached out to Sarah’s parents and they graciously agreed to take the boys. Within 24 hours we were at a cozy inn overlooking a snow-covered lake.
“I’m just so tired,” I told Sarah at dinner as she held my hand across the candle-lit table. Tears streamed down my face as months of pent-up strain and sorrow broke through uncontrollably. Behind those words were layers of pain and depletion, longing and despair.
As I later described this experience to a friend, he said immediately, “That sounds like classic burnout.” Even when the responsibilities of caregiving were removed, my body was still reverberating from the strain.
It made me realize that we live in a state of constant hypervigilance. Caring for a son with significant disabilities, we are needed from sunup until sundown. Years of waking multiple times a night to replace a blanket or clean up a feeding tube spill, hospital visits and blood work, specialists and missing milestones. Responding to screams of frustration from delayed communication and the sorrow that is always in the background. We have trained ourselves to be prepared for accidents and meltdowns, lack of accessibility and an attentiveness that means we are always “on.”
All of this has made Sarah and I much more comfortable using the word, “trauma,” to describe our experience. And that made me wonder, as we rested at the inn, do we have PTSD from years of caregiving?
After doing some brief research (Just Google “Special Needs Parenting PTSD), I came across this article written by a special needs mom, she writes:
“What special needs parents go through is not precisely Post Traumatic Stress Disorder. Instead, it’s Chronic Traumatic Stress Disorder…You see, we never get to the “post” portion of PTSD when living with a special needs child. It’s chronic because it is continuous. We’re always worried about the next doctor’s appointment, seizure, or surgery.
We never know what the next call from school will bring, or even if they will get to go that day.
There is never a time when we can take a deep breath and know the worst of it is behind us.
The life of a special needs parent is a continuous cycle of anxiety and trauma. Even on our good days, we worry about when the next bad one will come. Even the happy memories are invariably tinged by fear, guilt, and stress.”1
As soon as I read the first sentence, the tears returned and soon I was sobbing. The same involuntary reaction I had at dinner that night, repeated itself. The writer had put words to my experience and by doing so, helped me feel seen and understood, and that connection helped me grieve.
After three days of respite, we picked up the boys and returned to New York City. We came home with a new awareness of our depletion and wondered how to better care for ourselves? Is it possible to live with “CTSD,” differently? How can we manage our stress and fatigue in healthy ways? What does support look like for us when our family lives far away?
I wish I had the answers and a step-by-step guide to doing this the “right,” way. We are still learning and doing the best we can. Perhaps, acknowledging our experience is the first step, seeing and understanding each other, allowing ourselves to feel through the tears.
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[1] Cheney, Meagan “Dear Special Needs Parents: It’s Time to Stop Saying You Have PTSD.” TODAY.com, 9 Sept. 2019, community.today.com/parentingteam/post/dear-special-needs-parents-its-time-to-stop-saying-you-have-ptsd.
About the author
Sasha Hallock has been a host with David’s Refuge since 2015. He lives in Brooklyn, NY with his wife Sarah and two boys, Judah and Oliver.
