Beauâs sketch this morning of our wild & free family of four
Dear Readers,
This year my goal is to live louder & prouder, and have my work reflect my current reality. Iâm comfortable writing about my distant past, but sharing whatâs really going on, the messy present? Terrifying. And right now, Iâm in the THICK of parenting a spectacular neurodivergent four year old who I love more than life itself.
About a year ago our family went down the neurodivergence rabbit hole, and weâre still here, fumbling our way through. The experience is confusing and exciting and illuminating, but most of all, utterly surprising. I thought I knew a thing or two about the brain, my brain in particular. But the past twelve months has challenged every truth I hold dear, upending my lifelong notions of what it means to be a woman, sober, abstinent, a survivor. Big, hard stuff.
Iâll be sharing what I learn relating to neurodivergence in a series of blog articles, changing a few details to protect privacy. Thank you for your thoughts and encouragement, always!
Robin
âDiagnostic Clarityâ
On a hot Monday in late July, I drove my three year old daughter, Peach, across the bay bridge to a well-known pediatric health center in the North Bay. Finally, after six months of waiting, the day had arrived for our in-person diagnostic assessment with a pediatrician specializing in neurodevelopmental disorders (ADHD, autism, OCD, etc.). The clinicâs website reads, âWe provide accurate diagnoses for autism, ADHD, developmental delays, and the full range of developmental differences. Our findings allow us to bring the right set of therapies together for your child. Here are just a few of the standardized assessments we use: CARS, ADOS, ADI-R, VABS.â Suffice to say, my expectations for this assessment were high.
Peach is our magic kid who started talking at six months, has an encyclopedic knowledge of Frozen, and crawls into my bed every night to "keep my head warm."Â She has never slept more than five hours straight, melts down at the slightest change in routine, and has trouble with friendships due to a fierce stubbornness and a ready-fire-aim temper.
For years Peachâs pediatrician has assured me that Peach is âjustâ highly intelligent, typically developing, albeit headstrong. 'I wonder who she gets that from?' she says with a wink. 'My partner calls it my busy brain,' I bluntly reply. 'She gets it from me.â I hear this often: that Iâve spawned a miniature version of myself, from my daughterâs untamable mass of curls to her little professor talking style to her inability to follow rules and stay in line. Sheâll be fine, I kept thinking, sheâll learn to cope, I turned out okâŠ
But then Peach started preschool. More days than not I picked her up in tears, her tiny hands death gripping my arms, my shoulders, inconsolable. âAbby says Iâm not her friend anymore, Mama. She got all the kids to run away from me.â When I demanded an explanation from her teacher, she responded by saying that Peach âmakes animal noisesâ on the playground and is too âbossyâ and ârigid.â âKids will be kids,â another teacher chimed in. âPeach will learn.â
Our home life tipped from happy chaos to war zone. Peach started melting down six, seven, eight times a day, often for hours at a time, refusing to go to school, to sleep, to eat. Self-inflicted gnashes bloomed on her arms and legs, her hair grew brittle from poor nutrition. I was looking at this mini me, a toddler, and seeing my teenage self. This is too early, I thought. Is she âone of usâ like we say in AA, is this my familyâs inevitable curse?
Obviously I was a nervous wreck, and when Iâm in that state, I lean full force into my recovery community here in California. My dear friend Liz went through something similar with her son, so naturally I turned to her for advice. âGet her into this neurodevelopment clinic for an assessment,â she wisely advised. âThey worked wonders for my son five years ago. At least then youâll know whatâs going on, but until that happens keep asking me any questions, you can not bug me too much.â So I booked an appointment, sat on the waiting list for six months, and called her every single day.
That brings us to that clear as a bell Monday, Peach and I sing-songing across the bay. I explained to Peach that we were going to talk to a friend of Mommy's about her brain, and she was eager to see if it really looked like "rice crispy treats before the oven.â âYes,â I told her, absentmindedly, focusing on the road. âWe have busy brains, Mama,â she said proudly.
Fifty minutes later, I perched on the edge of a plastic chair facing a doctor wearing a lab coat. The room had charcoal grey walls and no windows, with fluorescent lighting casting a greenish alien sheen on our skin. Memories of detoxing in starchy hospital beds floated behind my eyes, the tremors, the hallucinations, the wrenching pain. Meanwhile, my three year old played with legos on the floor, periodically looking at me with an expectant expression. Understanding her desire to see the âbrain machines,â I cursed myself for not explaining the appointment better. I mouthed âsoon,â and smiled reassuringly.
"How long do you think it will take to get an accurate diagnosis or understanding of the situation?" I asked the doctor.
"Oh, you'll have diagnostic clarity after this appointment. We will have a good idea," the doctor responded.
"Great," I said. "Weâre ready for the observation."
The doctor looked at me and smiled. "I don't actually need to observe her. The field is moving away from direct observation. Your descriptions of her behavior up to this point will be sufficient."
This startled me. As the biological parent carrying multiple diagnoses (substance use disorder, eating disorder, sensory processing disorder), I work hard to avoid projecting my experience onto my daughters. "Her diagnosis is dependent on my version of events? Wonât my bias lead to inaccuracy?" I asked.
"That's why a trained clinician needs to conduct this assessment," she replied. "After talking with hundreds of parents, I can see through your bias."
She proceeded to read questions from her computer screen, things I had answered previouslyâonce when getting on the waitlist, and then again during my âWelcomeâ telehealth visit a few days prior.
"Did she walk on time? Does she make eye contact? Does she engage in repetitive movements, like hand flapping? Is she a picky eater?"
At the last question, Peach interjected, saying, "Mama, Iâm not picky. I like yellow and red peppers." Then she turned her back to us and resumed playing.
"Is that a good sign, her talking to us?" I asked the doctor. "A sign that she's participating socially?"
"Not really," the doctor replied. "Peach isn't talking to me, that's the issue. She's only talking to you. Many neurotypical kids would be crawling all over me, interested in what I'm doing, wanting to know who I am."
"Okay," I said, thinking: neurotypical, Iâll have to Google that tonight.
Finally, after this forty-five minute survey, the doctor turned to Peach and asked her to follow a series of prompts. Peach jumped up and down, turned this way and that, held her foot while touching her nose. Her McIntosh brow furrowed in concentration. After a few minutes, the doctor smiled at Peach, then turned to me, declaring the conclusion of our evaluation.
âIâll be in touch,â she assured me, scribbling something down on a post it and handing it across her desk. âIn the meantime, this assessment occasionally brings up questions about our own neurotype. Here are a few resources directed at adults with neurodevelopmental challenges.â
When we got back to the car, I put my head on the wheel and sighed. âMommy, are we going to see the brain machines now?!â Peach said, her voice cracking. I explained to her that weâre coming back the week following for her scans. She burst into tears and wept the entire way home.
***
That night I shared the story with Beau, my husband, confounded by the experience. One, I was shocked at the doctorâs lack of interaction with Peach, and her reliance on my subjective recounting of her childhood to date. âIâm not a reliable narrator,â I say to Beau. âBut her diagnosis is hinging on my ability to be objective.â And secondly, the idea of me having a neurodevelopmental disorder, broaching this at age 38, was shocking. âIn ALL my therapy, all those rehabs, all this personal work, this prospect has never been introduced. This seems ridiculous?â
"It will be fine," Beau assured me. "They are experts⊠right?â
Iâm going to stop here, at the very start of this story, pre-analysis, pre-opinion, because I want to welcome your thoughts, insights, and reactions. Questions:
Have any of you been through this? What was your experience? What surprised you, what worked well, what didnât work, what would you have liked to see?
Obviously, I was struck by how different the diagnostic assessment & patient experience was from what was advertised! With consumer marketing infiltrating healthcare, are you also experiencing this dissonance?
Resources! for neurodivergent adults. Do they ⊠exist? Iâve discovered a few broke down websites that Iâm fairly certain were built in 1999. Help!
Thank you in advance! đđđ