Parents of Disabled Children Can Develop PTSD
I know because it happened to me.
Nov 3, 2017 | By Carol Glazer, President, National Organization on Disability
Twenty-five years ago my first son, Jacob, was born with hydrocephalus, or water on the brain. Doctors told us Jacob would grow up with both physical and intellectual disabilities. What those doctors didn’t tell me at the time was the emotional toll his illness would take on me.
It’s a story all too familiar for parents of children with severe disabilities, yet many of us struggle in silence. This week I decided to share my story publicly for the first time at a mental health forum in New York hosted by the National Organization on Disability, the nonprofit I am privileged to lead. As someone who encourages companies to create inclusive workplaces that invite employees to disclose their disabilities, the time had come for me to disclose mine.
I was diagnosed four years ago with Post Traumatic Stress Disorder, or PTSD. PTSD is most commonly associated with military veterans returning from service. Yet parental PTSD is more common than you might think — nearly 30 percent of U.S. children live with chronic health conditions. Many of them might not have survived in previous generations, but because of advances in pediatric and therapeutic techniques and a changing spectrum of disease, they do live — but often with a lifetime spent in and out of the hospital. Nearly half of their mothers exhibit symptoms of anxiety and PTSD. Count me as one of them.
All these years later I can still feel the way my face tingled when the doctor told me the news about Jacob. It was the start of a year in which Jacob underwent 12 brain surgeries, two experimental surgeries, and suffered from three brain infections – the first of which, acquired in the hospital at birth and undiagnosed for six weeks, had caused considerable brain damage, particularly to his visual cortex. At the end of this ordeal, we were told that Jacob would likely be blind, he might not walk, and that his level of cognitive functioning would only become clear in the next three to five years.
In an instant, all of the excitement and anticipation of the arrival of our first child suddenly turned to mass confusion and terror. I tried to wrap my mind around the painful reality of what Jacob had been through, the massive uncertainty surrounding his long-term prognosis, and a life we knew would now entail regular trips to the hospital.
I didn’t realize it at the time, but something profound happened to me in those early years of Jacob’s life. I became a different person. More cautious. More prone to worry. Impatient or angry with the wrong people. I wasn’t happy with the person I’d become.
Clearly and unmistakably, I’d experienced trauma. Not the kind soldiers experience on the battlefield, but similar. When you think about it, repeated hospitalizations are not unlike multiple deployments.
I hate talking about myself, and usually don’t. But I chose to share my story in the hope that it will bring to life many of the questions we seek to shed light on as it relates to mental illness in America, as it’s fraught with stigma, misconceptions, fears, and myths.
Why for so long did I dismiss the feelings of terror, the insomnia, flashbacks, and sheer exhaustion, believing I had to just get over it?
Why did I not seek a diagnosis until only four years ago and then reject it as nothing compared with combat trauma?
Why am I only now telling this story?
The answers, of course, lie in the stigma and misconceptions surrounding mental health issues in the workplace. At NOD, we work every day to reduce the stigma around disabilities, both seen and unseen. We have amazing companies in our Corporate Leadership Council who are making this a priority so that their employees are less reluctant to share their stories, thus allowing their managers to create more inclusive workspaces, and benefit from their diverse talents and perspectives.
As for Jacob, I am happy to report that through a persistent regimen of early intervention treatments and multiple therapies, and with New York’s unparalleled special education system, he has thrived, with each victory bringing pure joy as he’s turned out to be a happy, clever, busy and loving young man.
And while the trauma of those early experiences crushed me to the core then, a new self has also emerged. Determined, skilled at dealing with adversity and solving problems. Resilient, vulnerable, and more compassionate. These are all skills a talented therapist has helped me recognize in myself.
Perhaps most of all, I have learned a workplace-leading practice that we all can use when facing coworkers, bosses, or team members who are dealing with mental health issues. It’s just one simple word: Empathy.
My colleagues have consistently been willing to put themselves in my position, not just feel for me, but put themselves in my place and think about how they’d want to be treated. That has engendered my loyalty, productivity, and ability to turn my life experiences into positives for my employers. In the case of NOD, I’d venture it’s had a direct impact on our mission.
As humans we’re built to be empathetic — but that empathy has to be activated. Once you find your way to that as a coworker or friend of someone who’s experiencing a mental health issue, or any disability for that matter, much of what you need to do will follow.
That is my story. I wish I’d told it sooner.