Every single time my cell phone rings, my heart starts to thud in my chest. It feels like it’s trying to escape the muscle and bone that contain it. Slightly light-headed, I can’t grab the phone fast enough to see the caller ID, often fumbling with the wrong side up, upside down phone in my haste to read the screen. A mantra runs through my brain, Let it not be them, let it not be them, “them” being whoever is caring for my daughter at that moment. My ding-dong text alert results in the same response. Crazy thing is, this happens even if I’m with Lauren—my body’s learned response akin to Pavlov’s dog. It’s the result of too many years of a ringing phone being a call to arms, or rather a call to run. And if not necessitating a mad dash out the door, at a minimum, the ring signals some problem or issue affecting Lauren’s well being.
Lauren’s early years were such an uphill battle, so strewn with things for me to panic over, that panic has become my default response to even the potential of a problem. It’s probably some primitive, fight or flight response, helping me prepare for even the possibility that heightened preparedness is needed. And, it’s exhausting.
In a recent post, when referring to parents raising children with severe developmental disabilities, I used the phrase, ”the post-traumatic stress of raising their child to the present day...”. Do parents actually develop post-traumatic stress disorder (PTSD)? Can parents on this difficult journey suffer from something we more frequently associate with veterans of combat and military operations? Researchers are beginning to study the effects that raising a child with a life-threatening or serious and chronic conditions can have on parents.
Studies have measured the cortisol levels of parents of children with disabilities and found them comparable to individuals who have been diagnosed with PTSD. Cortisol is a hormone that regulates many of the body’s processes including metabolism and immunity. These increased levels of cortisol put individuals at risk for compromised mental and physical health. It may result in fatigue, decreased immunity, mood disorders, poor sleep, headaches, gastrointestinal problems, and increased vulnerability to stroke, heart disease, and hypertension.
The American Psychiatric Association defines PTSD as a psychiatric disorder that can occur in people who have experienced or witnessed a traumatic event, something that is generally outside the range of usual human experience. Most parents of children with developmental disabilities have had ample evidence over the years that their parenting experience is far from the norm. The clinical criteria for the diagnosis of PTSD is a lengthy list that explores the nature of the exposure, the presence of symptoms such as flashbacks, reactions to related events, and prolonged distress. It also looks at negative alterations to cognition and mood, symptoms such as hypervigilance, irritability, sleeplessness, and the duration of all of these symptoms.
Everyone reacts differently to the “outside the range of usual human experience” experience of raising a child with developmental disabilities. And, no two experiences are exactly the same. Our children, their unique challenges, our families, our culture, our communities, its resources, and our own personal resources and challenges all contribute to our individual experience of raising a child with special needs. The development of PTSD in a parent depends on all of those interrelating factors.
Reports and studies specifically about the occurrence and prevalence of PTSD in parent of children with disabilities are few, but growing. Researchers note that a single traumatic event or the ongoing condition of a child can cause PTSD. Data from sixteen pooled studies show the prevalence of PTSD in parents of children with disabilities at 23%. Another study shows the prevalence at 30% with another 30-40% experiencing symptoms significant enough to impair function. Because these studies include parents of children with all disabilities and medical conditions—not just developmental disabilities—the true prevalence specifically in that subgroup is unknown.
Parents tend to develop an exclusive focus on their child’s life management and well-being—totally engaged in their child’s challenged experience of life. An interesting survey by anthropologist David Marlowe has shown that witnessing harm to, or the distress of, others is actually more traumatic to an individual than experiencing danger or trauma themselves. Parents do not make their own well being a priority, nor is it the priority of professionals caring for the child.
In order to facilitate connections and solidarity among parents having similar experiences, parents, especially in the early days, are sometimes referred to support groups where they can share their experiences with each other. I had my own experience with a well-meaning group that was part of Lauren’s Early Intervention Program. I wrote about it in Special Needs, “There are a lot of tears and monologues of woe in this stuffy room, and the hands on the clock above the door, which is our only escape, move all too slowly. It is consistently painful to listen to the heartbreak of these mothers, of their dashed dreams and unrealistic hopes.” It’s been found that the sharing of similar experiences may actually add to a parent’s trauma by adding other’s experiences to their own, reinforcing trauma rather than providing positive reinforcement.
When it comes to caring for and protecting your child— from an evolutionary perspective—it’s good to sleep lightly, wake quickly, react to strange noises and generally be vigilant. Anger keeps you ready to react; flashbacks are a reminder of potential threats. But this is usually a short term response, not a life-long need. It’s been said that in this type of survival mode, you don’t thrive. You simply endure. Fellow mom, advocate, and blogger, Hillary Savoie, has said, “If your child’s health status is unchanged for the duration of their life or your own, how do you reorient yourself to regular life while remaining in anticipation of the repeat of a traumatic event: The thing that is harming you is also helping you to protect your child.”
I can’t help but believe that a contributing factor in parents developing PTSD is the fact that raising a child with developmental disabilities can be an intensely isolating experience—the child’s needs and challenges creating barriers to social connection and participation. In Sebastian Junger’s Tribes, a book on PTSD, he notes that “In humans, lack of social support has been found to be twice as reliable at predicting PTSD as the severity of the trauma itself.” He also notes that, “....one way to evaluate the health of a society might be to look at how quickly its soldiers recover, psychologically, from the experience of combat.” Perhaps we should look at the increasing evidence of the occurrence of PTSD in parents of children with developmental disability the same way.
Of course, most parents are not experiencing traumatic events every day. There are family dinners, things to celebrate, and blissfully boring days. But, Junger further explains that the interweaving of trauma with positive experiences makes it difficult to separate the two. When this goes on long term it creates a more complex scenario than a traumatic event that is limited or isolated. And raising a child with developmental disabilities into adulthood is all too often a long-term series of traumatic events.
I think if a diagnosis of PTSD becomes more prevalent in the lives of parents of children with developmental disabilities, they will have to adjust the name of the disorder. There is no “post” to the stress, trials, and fears of continuing to support our children through adulthood. Coping mechanisms for overcoming the effects of trauma will need to be adjusted for those who must continue to endure in a role where sustained threats and disturbing events never end.
I’ve tried many coping mechanisms over the years, but the results are temporary, superficial, insufficient. My morning meditation is frequently interrupted by a text message from a DSP. I’ve even tried changing the ringtone on my phone to something bright and breezy, an audible reminder of the positive potential as well as the negative. It didn’t help. It brings to mind the phrase--putting lipstick on a pig.....I still knew what could be behind that ring.
It is difficult to remember when anxiety became my default emotion, when constant vigilance became more a norm rather than a situational necessity. Having Lauren changed my life in a far greater way than just adding “Mom” to the roles I planned to have. I became “mother of a child with severe developmental disabilities” and it was far more than a new role. That reality colored every decision, event, and possibility in my life. It had the conflicting effect of both expanding my concept of who I was and who I thought I could be, and limiting the content of my days and opportunities in my future. But most of all, it changed my reaction to and perception of the world and my understanding of the dangers that lurked within it.....for my child, yes, but also for me, lest something render me incapable of caring for her. And perhaps most of all, it has resulted in unending vigilance and a disturbingly informed fear of what could easily happen next. Is that PTSD? I don't know. I do know that whatever you may call it, it will be with me until my thudding heart no longer continues to beat.
is the author of Special Needs: A Daughter's Disability, A Mother's Mission. Gail is an accomplished advocate and writer in the field of developmental disabilities and Mom to Lauren, a young woman endeavoring to lead her best life despite severe challenges.