Transforming What We Face Into How We Flourish Compassion-based tools and practical strategies for parents and professionals navigating neurodivergence. Learn to regulate, advocate, and create systems—at home and at work—that foster belonging, confidence, and authentic thriving.
When the diagnosis comes rolling in (at any age)
Published 12 days ago • 5 min read
The Understory
Transforming What We Face Into How We Flourish
Fall 2026 | Issue 38
When the diagnosis comes rolling in (at any age)
Today I went to the doctor with my 84-year-old mother, and I was surprised to be thrust back into a feeling that is all too familiar but that fades with time, a bit like giving birth.
The doctor walked in and started talking to me rather than to my mother. He shared the scores from a recent blood test, which suggest she may have developed Alzheimer’s. He gave us orders for a neuropsychological test, and my mother asked what that was. Having described it to so many parents and to my own daughters, I told her it’s a test that shows what your brain’s strengths are, so you can use them to work with its weaknesses. The doctor said that was a great definition. I told him my career and my years as a mother had given me that definition at the ready.
Then, rapid-fire, he said she needed an MRI and another blood test, and that we should come back in two months with all of the results. My mom was stopped in her tracks; why wasn’t he talking to her? She wanted to talk about the trepidation she felt at so much testing, and she certainly didn’t want to talk about the throw rugs on her floor that she keeps tripping over. So we gently talked about the photos of Vail in the 1970s and Eagle’s Nest in autumn that decorated the room, and then he left.
My Mom and I with the aspens yesterday
As I drove home, my mind began that too-familiar racing. OK, if this is the case and my mom has Alzheimer’s, what does that mean for her, and what does that mean for me? A sense of dread was dancing around in the background.
Fortunately, I was able to do a Self-Compassion Break. First, I noticed it: hey, my anxiety is rising, and I feel it in my chest and my belly. Then I reminded myself that I’m not alone, because other people facing a diagnosis like this feel the very same way. I texted a family member whose mother had Alzheimer’s and recently died. And then I asked myself, what do I need right now? Well, I need to do a little research about what can slow the progress of Alzheimer’s and what those blood test numbers actually mean. Oh, and I think I need to do a little research to make sure I’m doing all I can to prevent Alzheimer’s in my own brain. I’ll try not to feel selfish about that, because that matters, too.
Why am I telling you all of this? Because I know this is exactly the process parents go through when they find out their child has a form of neurodivergence, and I want you to know that I see you. The steps of the Self-Compassion Break, developed by Kristin Neff and Chris Germer, can be so helpful in these acute moments.
As time goes on, though, I know I’m going to need something more, so I’ll be working with my parts using Internal Family Systems. It’s not a done deal that my mom has Alzheimer’s, but I’m going to need to tend to my frightened parts. One is afraid of this journey alongside my mom and all the mysteries it holds. One is afraid of my own brain’s decline. And one is afraid that my daughters might not take care of me when I’m my mom’s age, should I have the gift of getting there.
I’m going to need to work with my managerial parts, too, the ones that switch into overdrive researching and setting things up and trying to put everything in order when very little can really be put in order. And I’m going to need to sit with my overwhelmed part. She keeps asking how on earth I can meet my mom’s needs and my daughters’ needs while also feeding my work, my partnership, my friendships, and myself. Oh, and somewhere in there, I’m supposed to keep from getting Alzheimer’s, too.
Do you see the parallels between this stage of life and being the mother or father of a child in elementary, middle, or high school when that diagnosis comes rolling in? There’s the worry. There’s the relief, because yes, you knew something was up! There’s the rush of thought and action to get in gear and meet the challenge. And then there’s the overwhelm.
We can meet the needs of each of these parts if we think of them as parts. That way, we don’t over-identify with any one hard emotion. We can meet the specific need each emotion is signaling. And we can find solid ground amid everything life kicks up, again and again.
A checklist for when the diagnosis comes rolling in
☐ Take a Self-Compassion Break before you do anything else. Notice what you’re feeling and where you feel it in your body, remind yourself that so many parents have stood exactly where you’re standing, and then ask yourself what you need right now.
☐ Get to know your parts. Which part is showing up loudest today: the frightened one, the manager who wants to research everything by midnight, or the overwhelmed one who wants to crawl under the covers? Naming a part helps you remember that it’s a part of you, not all of you.
☐ Talk it through with your coparent. Whether that’s your spouse, your partner, or your ex, try to find a calm moment to share what you each heard, what you each feel, and what you each worry about. You may be processing this at very different speeds, and that’s normal.
☐ Ask the evaluator to walk you through the report. You deserve to understand your child’s strengths as clearly as their challenges, so write down your questions and don’t be shy about asking for plain language.
☐ Research with boundaries. Look for trusted sources and set a timer, so your manager part gets what it needs without keeping you up until 2 a.m.
☐ Put your request to the school in writing. If your child may need support at school, send a dated written request for an evaluation for an IEP or a 504 plan, and keep copies of everything.
☐ Build your team. Your child’s doctors, therapists, and other clinicians come first for the clinical side, and a coach can walk alongside you with the emotional and relational side, so that you’re not carrying all of it alone.
☐ Talk with your child, starting with their strengths. Children often feel relieved to learn there’s a name for what they’ve been experiencing, especially when they also hear what their brain does beautifully.
☐ Keep taking care of yourself. Your child needs a parent who is anchored, which means your sleep, your friendships, and your own joy belong on this list, too.
If your family has just received a diagnosis, or you’re sitting in that strange in-between space of we think something is going on,” you don’t have to figure it all out alone. “I can help guide you through what’s next on both the logistical and the emotional level, so that your frightened, managing, and overwhelmed parts all get a little care while you get in gear. Let’s get in touch and talk about where you are right now.
"Whether you're just beginning to explore neurodivergence, feeling overwhelmed by the journey, or ready to build a sustainable path forward—you don't have to navigate this alone. Together, we'll turn today's challenges into catalysts for transformation."
Transforming What We Face Into How We Flourish Compassion-based tools and practical strategies for parents and professionals navigating neurodivergence. Learn to regulate, advocate, and create systems—at home and at work—that foster belonging, confidence, and authentic thriving.
