The information about her diagnosis was very limited. To quote our pediatrician during our first visit, “There is very little information about T9p out there. You will become the experts on this. We will learn about Charlotte together.” She also has pulmonary valve stenosis,2 apraxia of speech, and was recently diagnosed as being on the autism spectrum.
Charlotte is 10 now. She has spent her whole life doing things the hard way, not because she chooses to, but because reaching the same goals requires more of her. She is wired for persistence in a way that still astonishes me. She has a superpower. She can bring light and joy into any room, draw people together, and demonstrate a depth of empathy for others that most adults never develop.
Such empathy has a cost. What comes with feeling everything so deeply is the burden of carrying it. Regulation for Charlotte is not a background process. It is constant, active work. The world is already a great deal for her nervous system: too loud, too fast, too unpredictable, not built for the way she processes it. She manages it with a quiet ferocity that I am not sure she even knows she has.
I know this because I have the honor of witnessing it as her mother. I understand it from the medical perspective of how nervous systems work. I have spent nearly two decades learning to walk into a patient’s room, instantly assess the vibe, be in touch with my patient’s nervous system, and detect what their behavior is telling us when there aren’t words to hear the story. Yet, when our family experienced a traumatic event last year, it was Charlotte who taught me something I had not fully understood before: that in neurodivergent children, trauma does not always look like trauma. Sometimes, it looks like regression.3 Regression I now know, is a language as well.
Days after Christmas, we were on a family day trip off-roading, which was already a stretch for Charlotte's sensitive nervous system, but something we loved doing together. Her father's dirt bike went down. The helicopter came. The world Charlotte had worked so hard to make sense of stopped making sense entirely.
She did not have a meltdown. She did not cry in the way you might expect from a child who had watched something terrifying happen to her father. What followed was quieter than that, and in some ways harder to understand and navigate.
The potty accidents came first. Then the loops: the same questions, repeated in a cycle that no answer could break.
Is Daddy okay? When is the helicopter coming back? Are you going back to the hospital with Daddy? Who is picking me up from school?
I answered every question, every time. Calmly, clearly, with the steady voice, I have spent eighteen years as a bedside nurse developing. Every time, the answers I gave dissolved before they could land, and the loop started again.
To anyone watching, it might have looked like defiance, attention-seeking, or a failure to process. But it was none of those things.
Regression is not defiance or misbehavior. It is the nervous system seeking comfort and protection through familiar routines when faced with overwhelming stress.
What I was witnessing was Charlotte's nervous system attempting to categorize an experience that resisted categorization, running the same search, over and over, for an answer that did not exist yet. The potty accidents were not about forgetting. The loops were not about needing better information. Both were her body's way of seeking reassurance, predictability, and safety at a time when all three had evaporated.
In children with both autism spectrum disorder and intellectual disability, traumatic stress responses frequently present as regression in previously mastered skills: toileting, communication, self-regulation, rather than as the overt emotional distress we might expect. Their nervous systems are often already working harder than their neurotypical peers, simply to manage daily sensory input. Acute trauma tips that load past the point their system can hold, and the result is retreat: back to what is known, back to what is safe, back to skills that require less effort, back to basics.
These regressions are not losses, they are protection.
It took me longer than it should have to stop trying to fix what Charlotte was doing and start listening to what she was trying to tell me. She had read the fear I believed I was hiding. She had felt my hands shake, while I packed my bag for the hospital, and hers for her grandparents. She had been decoding the expressions of what I thought was my composed face, the one I wear at work, the one that says everything is ok. She was trying to make sense of why it did not match what she felt in the air around her.
Children with heightened sensory awareness, as many kids with neurodivergence and sensory processing disorders have, absorb their caregivers' emotional states more accurately than we realize. I knew that Charlotte was a sponge. She has always soaked up the emotional atmosphere around her. I just didn’t know how much until this experience. The professional mask did not protect her. In many cases, the gap between what she sensed and what she was told created its own layer of anxiety, another layer of questions. She wondered why these two things didn’t match. This is layered on top of an already overwhelming experience.
She was not ruminating because she needed better answers. She was ruminating because the problem felt too big to comprehend. It didn’t make sense, and her brain could not stop trying to make sense of it. Repetition and consistency in answers brought comfort.
We were two hours into a question and answer loop. I had answered the same question more times than I could count. I was exhausted and frustrated, and my instinct, the nurse instinct, the fix-it instinct was reaching to find a better strategy.
Exhausted, physically and emotionally, I found the solution by accident. I sat down on the floor. I did not reframe anything. I did not offer more facts. I opened my arms and asked Charlotte to lie down with me.
She climbed up, her ten-year-old body somehow feeling tiny and enormous all at once. Magically, her questions stopped. She was quiet. Not because I had finally said the right thing, but because I had stopped trying to say anything at all.
The loop broke the way I should have known it would, not through logic, but through connection. Through being held by someone who was not going anywhere. That was the moment I stopped trying to be her nurse. I was just her mother. Coregulation4 can work miracles. I needed her as much as she needed me. I was experiencing the beauty of the love hormone, oxytocin, at work.
Existing evidence suggests that central oxytocin release contributes to the modulation and maintenance of cortisol levels that favor the rapid return of the body to its pre-stress baseline state (Amico et al., 2004; Gulpinar & Yegen, 2004; Heinrichs et al., 2003) to minimize the response of the HPA axis5 to psychologically stressful stimuli.
Her breathing slowed, my breathing slowed, our hearts synced, and we finally took a much-needed deep breath together. That turned out to be exactly what she (and I) needed. I slowed down and was simply present. Charlotte eventually drifted off to sleep on my chest like a newborn. Her little body relaxed. It felt safe.
What Parents Should Know
If your neurodivergent child shows regression after a frightening event, like accidents after years of dryness, repetitive questioning, withdrawal, clinginess, disrupted sleep, or reappearance of old behaviors, remember: your child’s nervous system is being protective. This isn’t going backward, it’s an intelligent, adaptive response. Key takeaway: regression communicates stress and the need for safety, not failure or loss.
Skills do not disappear in regression. They go underground while the system stabilizes. Their nervous system, not ours, writes the timeline for the return. We can’t rush it, but we can support it.
What helps is not correction, redirection, or a more refined behavioral plan. In my opinion, what helps, overwhelmingly, is safety and connection: a regulated caregiver, a predictable environment, and the willingness to sit with them, in their discomfort, without trying to fix it.
That last part is the hardest. Our instinct as nurses, and parents is to fix. But your child needs you to listen and stay, not rush to solutions. In my opinion, simply being present is the most powerful gift you can give.
References
1. Trisomy 9p is a chromosomal condition caused by the presence of extra genetic material on the short arm of chromosome 9. Clinical features vary widely but commonly include intellectual disability, distinctive facial features, skeletal abnormalities, and cardiac defects. Due to its rarity, published case literature remains limited.
2. A dysplastic pulmonary valve is a structural abnormality in which the pulmonary valve leaflets are thickened and irregular, restricting normal blood flow from the right ventricle to the pulmonary artery. Severity exists on a spectrum; in some cases, the heart adapts sufficiently over time to avoid surgical intervention.
3. The term regression as used in this article refers to the temporary return of previously mastered developmental skills — toileting, communication, emotional regulation — in response to acute stress or trauma. It is distinct from developmental regression associated with underlying neurological conditions and should be understood as a transient, protective response rather than a permanent loss of skill.
4. Coregulation refers to the process by which a regulated caregiver — one whose own nervous system is calm and grounded — helps stabilize a dysregulated child's nervous system through physical proximity, tone of voice, touch, and presence. It is the physiological foundation of what we more commonly call comfort. Research supports coregulation as a primary mechanism through which children develop the capacity for self-regulation over time.
5. The HPA axis — hypothalamic-pituitary-adrenal axis — is the body's central stress response system. When activated by a perceived threat, it triggers the release of cortisol, the primary stress hormone. In children with neurodevelopmental differences, the HPA axis may have a lower activation threshold and a slower return to baseline, meaning the stress response and its physiological aftermath may be more marked and longer lasting than in neurotypical peers.
ABOUT THE AUTHOR:
Melissa Furrier, RN, IBCLC, is a registered nurse with 18 years of clinical experience and an International Board Certified Lactation Consultant. She is also a medical writer with extensive experience translating complex clinical information for family and professional audiences. Her work sits at the intersection of evidence-based practice and the lived experience of caregiving. She is also the mother of a 10-year-old daughter with multiple disabilities, including autism, Trisomy 9p, and Apraxia. This combined perspective informs her writing with both clinical rigor and the hard-won insight that only comes from navigating the healthcare and disability systems firsthand.
Read the article here.