• Casey

On Diagnosis

Updated: Feb 18, 2021



When my first son was born six years ago, a deep self-doubt seeded in my heart and sprouted alongside of him. His atypical behavior and challenging first months on earth watered and tended to my growing insecurity. His patterns did not make sense to me, and I could no more soothe him than decipher the “why” behind his screams. I asked lactation consultants, doulas, psychologists, pediatricians, and other moms. None of their suggestions helped to calm him. We bought colic drops, mixed chamomile tea with breast milk, and pedaled his legs. I cut dairy out of my diet and we stuck one of these things up his poor little bum, trying to release gas.


None of it made a difference. No one had a good diagnosis, let alone a treatment, for what was happening with my son. My confidence was eroded as every day felt like a losing battle, with nothing learned to improve my odds when the sun rose for the next one.


In Cooper’s late toddler years, we started asking the pediatrician about his eating struggles, his lack of self-regulation, his hours-long meltdowns. As my son neared four, his dysregulation turned into disruptive and challenging behavior. The pediatrician and the books said we had to be stricter, to use reward-punishment models and time-outs. As we followed this advice, my son continued to spiral away from me and my belief in my mothering diminished further.


On the very worst of days, I began to question, Does my son have OCD, bipolar disorder, is he a sociopath, a bad kid, a demon? Am I being punished for something? It was at this time that my husband and I asked one another in hushed tones, if it was possible our son had been abused at daycare. It seemed he was behaving like a child who had suffered abuse and neglect. He cowered and ran from us, lashing out physically with fear in his eyes if we got near him.


I kept looking for a reason, a solution, a professional who could "fix" him. For someone to tell me why, what to do, and what was actually going on.


Eventually, I realized there were only two choices: change him, or change ourselves, dramatically, and see if anything improved. We abandoned the behavioral approach. When Cooper shouted in our faces, my husband and I tried our best to say calmly,


“Oh, I didn’t know that, thank you for telling me.”


Rather than leaving him in his room as “punishment” for throwing things, refusing to comply, or even hitting or kicking us, my husband and I willed ourselves to sit with him through his meltdowns, in a quiet state of accompaniment and bearing witness. At the time I might have called it radical parenting. But perhaps it’s unconditional love.


We started intensive occupational therapy without a diagnosis. My son spent much of the first two weeks unwilling to leave a large Lycra swing that enveloped his entire body like a womb. When the therapist swayed him high enough so that his line of sight with me broke, he screamed, so we swung him just below that height.


We had no idea what we were doing. And if it were to work, we wouldn’t even know why.


It was a gut-wrenching process, with difficult tradeoffs along the way, but what I began to observe was that a more supportive, relationship-based approach was helping Cooper. As we started to establish trust, his behavior slowly, slowly improved, and I saw glimmers of a little boy I didn't know was inside of him. Each fleeting moment of connection and calm gave me the evidence we needed to keep going down this path. He was speaking again, eating a few things, and finding a way to smile occasionally.


This clarity came slowly, and in fits and starts. When he stopped running from me, I started to notice that he often looked at the bridge of my nose, instead of into my eyes. When he stopped screaming, I realized that when he didn’t answer me, he wasn’t being defiant or ignoring me, he simply hadn’t heard or understood what I said. The fog began to clear, and it was only then that we could even begin to see the complexity of his brain wiring and the strong current of anxiety that flowed beneath every cell of his being. We started to recognize the child that had been buried under his own difficult behavior. Behavior that shadowed our days and eclipsed our son’s light.


It was Cooper’s occupational therapist in Michigan who suggested I look into PDA. It took me four months to google it. I didn’t have the energy to know. When I finally started reading, everything made sense. It was painful, but it was also like someone had waved a magic wand and I could finally see.


We began lowering demands, using non-violent communication and declarative sentences. I reluctantly ceded control of the ipad and stopped making him eat at the table. I found other moms who were digging themselves out of the same darkness. Cooper kept emerging, and started to really trust me. And I started to trust myself.


Six months later, I knew my son’s diagnosis better than the specialists, who were finally able to see him for an evaluation. In a first appointment, as I could have predicted, he hid under a weighted blanket with a pacifier for the bulk of the assessment, rotating between my and my husband’s laps.


In the second, I had to tell the doctors if they weren’t willing to look beyond the fact that he could make eye contact and talk, then we should just stop the evaluation then. That we should stop wasting everyone’s time. And no, we didn’t need insurance coverage for full-time ABA therapy, because we weren’t planning on doing it, nor did I need a lecture about his use of a pacifier for self-regulation. I had larger concerns than eventual orthodontia or speech therapy. They brought in a more senior doctor.


My son now has diagnoses of ASD from two doctors. And although PDA isn’t an official diagnosis in this country, one of them noted it in his write up. These diagnoses are helpful as we navigate bureaucracies, but they came too late to teach me a thing about how to parent and care for him. I had to learn that on my own, over the course of years, using my privilege, desperation, research skills and luck. It’s a fate I would wish on no one, but one I know many other PDA parents have endured. In fact, had my son’s Autism evaluations come before I knew about PDA and how to explain it, he might not have gotten any diagnoses at all.


Around the same time as we did the evaluations, I also sent a shamanic healer on a spiritual journey on my son’s behalf. She brought back a power symbol, a gift from his ancestors, and drew it on a piece of paper. As she handed it to me, she said,


“Your son is a new beginning. He is the rising sun.”


And he is. For both of us.

 

(Drawing by Michigan-based craniosacral therapist and shaman)

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