One is Not Enough
Updated: Mar 31, 2021
A few weeks ago, I took Cooper to an appointment to discuss his progress since his Autism evaluation in the fall. He sat in the chair next to me in socks and pajamas, with small dabs of opaque gel peaking through his uncombed hair from his neurofeedback sessions, fidgeting. As I spoke to the developmental pediatrician – an empathetic woman whose own son is on the Autism spectrum – he fixated on me and repeated, “Mama, Mama, Mama,” as I tried to speak about our experience.
I knew his anxiety was rising, as the demand to share my attention in an unfamiliar space was approaching his threshold of tolerance. We were five minutes into the appointment. As I continued to update the doctor, he began to shift in his chair, twisting his body upside-down over and over and groaning, “Mama, Mama.” They gave him crayons and a piece of paper. He scribbled hard, as fast as he could, then threw the paper across the room. “Mama, Mama,” he said as he spun in the plastic chair.
I took off my watch and gave it to him. He groaned, and I could sense his body needing to move, needing to escape. I handed over a beaded bracelet, and then my phone, so he could watch Kids Youtube. He started asking, “When are we going home?” repeatedly, interrupting my sentences to the point I couldn’t continue. I paused and told the doctor that it was difficult for me to speak in this context. Additionally, I didn’t feel comfortable talking about him while he was sitting next to me, as if he didn’t understand. A resident came in and took him to play in the next room.
In the past, this situation would have been embarrassing, shame-provoking, and brought up the desire to stop the unfolding scene. But this time, I let it unfold, gently, at a level of discomfort right on Cooper’s edge. It felt necessary, to keep talking to the doctor, to demonstrate a tiny counterfactual – this is what my son experiences in a scenario where I am not giving him 100% of my effort to accommodate his needs. Five months ago, the same doctor hadn’t been entirely “sure” if it was indeed Autism. Now she looked at me with concern, suggesting further testing, possible therapies.
Alone, we spoke about what our day-to-day looked like, how things were going. I explained the PDA approach we were using and she said to stick with it. She suggested a book I had already read. Then she offered advice:
“You know, as a mother it’s important to think about what all these lifestyle changes mean for you. For example, it’s ok if you let him take off shoes, but you want to think about the tradeoff, how much laundry you will have to do, how many new socks you have to buy.”
I nodded and thought to myself that despite this woman’s training, compassion, and level of personal experience with her own son, she simply has no idea what it is like to live with, accommodate, and raise a PDA child. That the tradeoff is not extra laundry vs. temporary discomfort, power struggles, or meltdowns until he is conditioned to wear his shoes.
The tradeoff is that each time I make him wear shoes, his body registers the demand as a threat to his safety, and his cumulative anxiety raises. When his anxiety is too high, he no longer eats or sleeps. And unlike the conventional wisdom, he will not eat when he is hungry or sleep when he is tired. To no fault of his own, his body registers his life as trench warfare, and even doctors will tell you that soldiers don’t eat or sleep when they are in the direct line of fire.
When his anxiety is too high, my son is pushed – invisibly – toward crossing the dangerous threshold of full-on fight or flight mode.
My son is a flight profile. He has run into the street towards oncoming traffic, broken free of a restraint and run through parking lots, opened car doors while I was driving, opened a house window and pushed the screen through, tried to tear the baby gate from the top of the stairs, hurling his body towards a steep and twisting staircase. Fleeing.
It always happens in a split second.
When I am alone with him and my two-year-old – a scenario that I endured throughout the four months of quarantine here in Michigan -- there were times when I had to choose between them. Who is most likely to get hurt? I had to leave one screaming, usually the baby, to prevent attack or injury, lamps from crashing down, exploding light bulbs and glass. When the baby screams, Cooper screams over him, drowning out the sensory onslaught, and they trigger one another, back and forth.
I am my son’s primary accommodation. And that is not enough. I am not enough. Not in an existential, I’m-not-a-good-enough-mother type of way, because actually, for the first time in my motherhood, I feel like I am exactly who he needs. But there is not enough of me. No person can do it alone.
Families need appropriate, supportive, non-behavioral based services that can help provide for their child’s needs - co-regulation and safety. It is not about extra laundry or inconvenient tradeoffs. It is about enabling a family to get through the day intact.