When I reflect on my experience of motherhood before PDA awareness and fully understanding my son’s brain-wiring, the overriding feeling that surfaces is grief. This may be surprising because my child is alive, physically healthy, and living under my roof, with me and his father, to whom I am happily married. My son did not die prematurely, suffer great injury, or inherit a chronic illness. All his limbs are present and functional, he has two eyes that see, ears that hear. And therefore this grief feels shameful and indulgent, not to be uttered aloud beyond the confines of a therapist's office or in the quiet darkness of my bedroom, when impending sleep has dulled my emotional guardrails.
But when I begin to question my own sadness, I remember this quote from the preface to the book, Sensational Kids, which provided some salve to the wound when I stumbled across it,
"What happens when a developmental problem interrupts the natural flow of parental and child connection? What if, despite your best efforts your baby is never happy? What if when you hold your baby, he arches away from you... not once, not twice... but every time?" (xxvi)
And I realized that it was the every time that has so deeply wounded me. That until I had a second, more typically-developing son, I never had the opportunity to learn the way it felt to have my baby sleep deeply on my chest, turn towards me for a spontaneous embrace or a moment of cheek against cheek, be calmed by my voice or touch.
I spent my son’s first five years unable to soothe him. At the same time, I had absolutely no understanding or insight into why the things I did -- hugs, caresses, games, songs, toys -- were at best ineffective, and at worst, caused him agony. And because of this we lost (or never fully developed) the natural attachment between mother and son. The rupture began with and took deep roots in the first four months of his life, when as an infant, he screamed without stopping, without sleeping, without remedy.
This rupture consolidated in the subsequent years when the greatest indicator of our parental "success" was simply the absence of screaming and that he was meeting his growth milestones at the pediatrician's office. And these years felt like failure and drudgery. Most of the time, my husband and I dreaded spending time with our son. This was a terrible secret, hidden sometimes even from each other, and we berated ourselves silently, wondering how we had failed so profoundly in the most human of endeavors.
When one year ago I learned about Pathological Demand Avoidance, it cracked open a window into this grief, and light started to flood in. Finally, my husband and I began to understand why that primal connection had been frayed and then ultimately broken two years ago when Cooper had his crisis. And we started to stop feeling so much shame. It gave us a chance at finding a way forward, to help our son develop, feel joy, and to rebuild attachment. But despite these gains, there was still a period of love that was lost.
Upon moving to Michigan, a few months before the pandemic began, I visited an inclusive church service in my new small town. It was the first time I had stepped into a church as an adult without being compelled through the doors to share in the rituals of holidays with more extended family.
I had been attracted to the service because it was designed for families who had a child or family member with a disability. The sign for the service showed a school of black fish swimming in one direction, while a sole red fish swam in the opposite. This sign spoke to me, so I decided to give it a go.
At the service, there were therapy dogs greeting people as they walked through the door, a table replete with fidget spinners, and a beautiful “no shushing” policy that was respected when people from the pews interrupted the pastor as she spoke. I went to the service alone, and stood in the back, feeling like perhaps I shouldn’t be there, as I still hadn’t learned my son was autistic and certainly had not embraced the “disability” label. Despite feeling awkward, I realized tears were pouring down my face and I couldn’t stop them from coming. I noticed the pastor notice me during her sermon and I felt my cheeks flush.
After the service, she approached me to ask if I was OK. I told her “No, I’m not.” It just came out like that. So she ushered me gently to her office, let me express my pain and confusion, and handed me this book, Healing After Loss. When she handed it to me, I felt seen. That I didn't have to explain or justify my grief. I opened the book to that Sunday's date, January 26th, 2020 and the daily meditation was the following:
"To help another is to forget, for a few moments at least, one's own primary consuming need. We gain a little perspective in knowing we're not the only one. And having a similar need, we understand one another, are bonded together in ways that only those who have traveled the same pathway can be.
We don't need to explain ourselves. The other knows. He or she has been there. Initially, in these pairings we will be the needier. Someone who has been there can be our guide, our hope-inducing model. Then after a while, we will take our turn as the guide. But even then, the sorrow that lingers will lesson as we bring the life-giving hope to another. See I made it through, so can you."
And so I will say to you, if you feel grief because parenthood has gone off the rails for you, you aren't alone. And this is true even if your child is here, in front of you, breathing, and maybe even laughing and thriving now.
May you travel this path accompanied and with self-compassion.
Photo credit: Hannah Reding