The Seed That Grew Between Us
How my daughter’s diagnosis revealed my own and reshaped the way we love.
Memoir-in-Essays Series: Entry 12
2018 to 2019
In the years after we moved, life rearranged itself again. Our son started school and quickly found friends who fit him in a way that felt almost magical. It amazed me to see how children gravitate toward the people who make them feel at home, because the families he chose for himself became some of our closest friends too. Those families became our anchors in this new place, roots that steadied us through every change and still hold us where we have chosen to grow.
Our daughter’s path unfolded differently. From the start she had challenges that stood out to us. Her motor milestones came later. Crawling and walking took longer. Fine motor skills lagged. She worked harder with visual processing, with proprioception, with interoception, with the invisible layers of the body that tell you how to exist in space. She was sensitive to sound, to touch, to rhythm. The world asked a lot of her, and it showed.
We called her Tenacious D, always with a smile on our faces and joy in our hearts. It fit her perfectly. Even now it makes us laugh that she adores Jack Black. When she was about five or six, she watched a particular Jablinski Games video of Jack shaving his Covid hairs hundreds of times. For her it was almost like ASMR, the hum of the clippers and the slow rhythm of the movement soothing something inside her. That mix of determination and delight was her through and through.
We knew early that she was neurodivergent, even if we did not yet have the words. By age four she was given a dual diagnosis: Autism and ADHD, inattentive type. It did not surprise us, but it still landed like a truth that rearranged the air. It named what we were seeing. It gave us a framework. It asked us to learn new ways of parenting, new ways of being with her.
At that same time, she was also labeled with a severe intellectual disability, a label we now know was inaccurate. Her learning has always been slower to unfold, but it is learning all the same, steady, determined, hard won. We believe that her attention and executive functioning challenges made her abilities harder to see, masking the intelligence that was always there. Even now she works harder than anyone I know to master new things. She is determined, curious, and yes, tenacious.
Her needs were specific and constant. She had a PDA autism profile, not formally recognized in the United States but absolutely accurate for her, and she was ADHD forward in a way that pulled her toward endless connection. She also needed near continual supervision, especially when she was little. She explored the world through her mouth. She leapt before she looked. Her impulsivity kept her curious and moving, but it also meant we stayed alert for what might cause harm. She needed touch, attention, and togetherness. She needed someone next to her every night, someone to soothe her through nightmares, someone to hold her when she felt the world pressing too hard. She talked constantly, narrating her world in a running stream of questions, ideas, and stories, her voice filling every space we were in. Even now she often needs someone in the room to help her pause when her brain tells her to do something unsafe.
What makes a PDA profile especially complex is that cooperation only happens through connection. Direct commands or structured discipline tend to backfire because they signal threat rather than safety. Collaboration, humor, and shared control are what help her nervous system stay regulated enough to learn or comply. In our home, that often means gamifying the simplest things: shower races, room cleaning timers, playful challenges, and small rewards of time spent doing something she loves, even when it is not something we would choose ourselves. These tiny bits of fun help her brain shift from threat to curiosity.
For me, this approach runs against instinct. My natural rhythm leans toward structure, predictability, and clear rules. Those are the things that make my own nervous system feel safe. To meet her where she is means loosening that structure again and again, staying flexible when every cell in my body wants to organize, to systematize, to bring order. It costs me energy every single time. Sometimes it costs capacity I do not have to spare. But it is also where connection lives, and where both of us can meet without either one of us breaking.
That has meant rethinking everything I absorbed about parenting from my own upbringing. I come from a family where the adult was always right, where obedience was expected, and where compliance was a sign of respect. Those patterns ran deep. Learning to parent differently, to meet her with curiosity instead of control, has meant unlearning generations of reflexes and rules.
I sometimes worry that when I speak of this, it sounds like complaint. But what I am really describing is devotion, the kind that does not get to rest very often. Loving her has never been the problem. It is the capacity for that love, the bandwidth it demands, that tests every boundary I have. What sounds like exhaustion is often just love stretched thin.
Jason stepped in often during those moments. He has always been more natural at providing that steady presence, the constant togetherness, the patient touch, the fun games, and the flexible approaches. I have learned by watching him, because it seemed to come to him more easily than it did to me, though I know it drained him too. He carried it because he loves her, because he loves me, and because he knew that sometimes I simply did not have anything left to give. Over the years, the balance has shifted back and forth, one of us shouldering more of the load at different times. As I write this, still climbing my way out of deep burnout, it is easy for my mind to see his efforts more clearly than my own.
And here is where the tension lived. My own needs have always been the opposite. I am autism forward in a way that craves structure, predictability, and above all, space. I need room in a day to be alone, to recharge, to let my nervous system reset.
For many autistic people, the nervous system runs like a car with a stuck accelerator, processing every sound, texture, and change at full speed while the rest of the world seems to drive in cruise control. Where others filter automatically, our brains often register everything: every flicker of light, every shift in tone, every expectation not yet spoken. Recovery requires quiet, not as a luxury but as maintenance, the way a muscle needs rest between contractions.
By contrast, ADHD often pulls the nervous system toward stimulation rather than away from it. The brain seeks novelty, motion, engagement, a kind of external rhythm that helps it regulate. Dopamine and attention systems run differently, which means calm can feel intolerable and connection becomes the anchor. One of us resets through stillness, the other through motion. It is no wonder our needs sometimes collided.
My mind demanded space in a way that her body and spirit could not stop asking to fill. And pouring so much of myself into her meant there was less left for others in my life: my son, my husband, myself.
For years I have given everything I had. I bent myself into exhaustion to meet her needs. It was love, and I would do it again, but it left me empty. Eventually I began to experiment with pacing, with small boundaries, with tiny acts of separation that might allow me to give without losing myself entirely. Teaching her to understand that balance has been a long process. Sometimes it has felt like she and I were speaking two different languages, both of us demanding more than the other could give, both of us right and both of us undone. Sometimes we clash, but we always come back to center, back to the love we share. Most often it happens face to face, lying down in an embrace, our bodies syncing until calm returns. It is our own form of co-regulation, a quiet reset fueled by oxytocin and love.
The gift hidden in that struggle was recognition. Her diagnosis revealed something hidden in me. Watching her helped me watch myself. The patterns I had denied for decades, the exhaustion I thought was weakness, the sensory sensitivities I dismissed as quirks, the way my body demanded order and my mind demanded space, all of it began to line up into something recognizable.
Despite the chronic, lifelong stress and overwhelm, I was not simply bad at coping. I was not fragile or overly dramatic. I was autistic. I had always been autistic. I had just been willing myself not to be. Willing myself not to be different. Not to need more support. Not to need more space.
At the time, I did not say it out loud. I tucked it away, a seed of knowing I was not yet ready to name. But the seed was planted, and it would grow.
Still contradictory.
Still happening.
Part of my memoir-in-essays on burnout, healing, and self-discovery. I write to process, to tell the truth of what healing feels like, and to help others find language for their own.