Routine, Regulation, & The Reality in Between
After a successful day, she got her screen time (strictly managed by a timer and negotiated often), followed by roller skating (filled with prompts to slow down, "wear your helmet" reminders, and a few mishaps). Then came dinner—a safe food that was also negotiated several times—followed by playtime outside, where chalk is a favorite sneaky snack and the air was full of giggles.
Finally, the shower. Water has always been a hurdle for her; washing hair has been a battle from the start. We’ve tried goggles, towels, and every head position imaginable, but a single water droplet to the eyes can still trigger a full panic. By this point in the evening, after the demands of school and a hard day of play, her mood is a wildcard. She might be giggling and singing, repeating the day's events through scripted phrases, or completely spaced out. (I get it, girl; it’s been a long day.)
Showers are difficult. I can’t send her to school with greasy, tangled hair, but I refuse to engage in a bedtime battle that leaves a kiddo dysregulated and me feeling defeated. Tonight, the shower was a win! The perfect pajamas were secured, teeth brushed, lotion applied, and her hair was… mostly combed (usually achieved while we’re pacing the room, as she’s never still for it).
For the final bedtime stretch, my husband and I tidied her room to create a cozy sleep environment while she organized her dolls. Tonight, the dolls needed a story. Typically, she wants to be the narrator—a version that inevitably morphs into an extended epic where astronauts and robots take over. I had to gently insist she rest so I could read to the dolls. They had to be lined up in a specific order and answer questions before the book was finished. Finally, the lighting was adjusted and the room was "perfect" for sleep.
Except, it wasn’t.
While her day was fantastic, the excitement and sensory input accumulated in her body. Nighttime is when she finally processes the "big emotions" she masked throughout the day. Her words become jumbled and noticeably upset. She cycles through anger, sadness, and over-excitement, all within a five-minute span. So, I sat there and absorbed the emotions.
This mom, from a few years ago, might have taken this personally or felt like I was doing something horribly wrong. That version of me would have become dysregulated, too. Now, I know what she needs. She needs to know that even when her emotions are massive, her panic is peaking, and her excitement is "stim-worthy," I will remain stable. I am her anchor. This took me a long time to understand, but in the process of healing myself, I’ve realized how much it has healed her.
I took a couple of (puny) hits to the arm, with a particularly angry face (She’s so cute, it’s hard to be mad) We don’t condone hitting, and she rarely struggles with physical aggression, but I wasn’t going to choose 9:30 PM on a Tuesday to "make a point." I allowed her to hit me. I allowed her to see that I still love her, that I’m not angry or disappointed—I’m just there.
However, my body was wanting to react to the situation. I was tense, shallow breaths, and praying I made the right choices in that moment.
I’ve realized that in these moments, she dislikes being perceived or looked at directly. So, I turned my gaze away and hugged a stuffed animal and took some deep breaths, kept a pleasant face(not disappointed, angry or direct)… Soon enough, her body began to mirror my own regulation. Through my deep breaths, and more relaxed “vibes” she felt safe enough to calm down as well. I led a small prayer, and—BAM—she was out. Thanks, Jesus. LOL.
I’m not trying to overdramatize our night; ALL kids have these nights, too. However, for a child with a Level 2 diagnosis, this is the baseline. Our routines haven’t changed in seven years, they’ve just become more refined and suitable. But the caregiving intensity remains the same. She needs constant support, a reality many parents on the spectrum understand deeply.
After both parents work demanding jobs, we have to regulate ourselves enough to support her. This isn't an occasional effort; it’s a constant state of being. Many parents of children with ASD find they are neurodivergent themselves which is an added layer of fun. Being a mental health therapist for middle schoolers all day, only to come home and regulate a little human who looks up to you? … shew. It’s incredibly easy to get caught up in the emotions from the day.
But I’ll tell you: watching her turn to me face-to-face tonight, allowing her body to melt into a cuddle after that episode... It was incredibly rewarding. Knowing that tomorrow will be much more successful now that she’s sleeping and regulated makes these moments so rewarding.
I’m still learning her, and she is still learning a world that wasn't necessarily built for her needs. If anyone needs to be a stable force—even if it means taking a few "cheap shots" to the arm—it’s her parents. I’m there to show her I love her. (Now, if she pulls that in the morning or at school, that’s a totally different story!) But tonight, during a very raw, human moment, I didn't make it about me or my feelings.
Not every night will I be this patient, and neither will you—and that’s okay. We are also still learning, healing, and growing. I mean, let’s be real: sometimes I want to throw some fists at people, too. LOL. Just kidding. (Mostly.) The idea is to just show up for them. Be their anchor even if it feels like it’s just you and them on that tiny boat in the middle of the ocean. You will never regret showing up for them and they will continue to view you as their safest person.
I’m positive you’re doing a great job!
Warmly,
A tired mommy,
Kasey Prince
A Note: I share these moments from my own lens, knowing that our experiences across the spectrum vary deeply. To those caring for highly impacted loved ones: your journey is seen, heard, and deeply respected.
We encourage anyone needing emotional or mental health support to reach out to professional counseling or community resources. For immediate crises, help is available 24/7 via the National Suicide Hotline at 988 or the Butler County Hotline 1-844-427-4747. For further questions or to join our community effort, contact us here at PTP!