I call us parents of kids with advocacy and support needs. Others call us parent caregivers. Whatever the label, it’s a full-time job—before you even add on your paying job, household management, and, well… everything else.
There were phases to my job:
- Before diagnosis: I swung between feeling like I was failing my child (why was he so emotional all the time?) and briefly wondering if the judgmental voices were right—maybe I wasn’t disciplining enough. Thankfully, my child made it very clear each time that was not the problem (ha!).
- After diagnosis: Then came the almost-required grieving process—mourning the life I had imagined. But in the end, I realized I still had the same child I’d always had, just with a better understanding of why our ‘unusual’ parenting was actually right on target for Whether the grief was logical or not didn’t matter—letting go of imagined futures is part of the journey.
- Then came the sleepless nights. No magic bullet. No easy fix. Just the reality that this wasn’t going to become a ‘lighter lift.’ I had to adjust.
- Next, I realized his overwhelm could be managed—but not within the failing systems we were stuck in. I had to step outside conventional thinking. And wow, was it liberating to recognize all the things I had blindly accepted! Homeschooling, for example—learning to teach to the student instead of forcing the student to fit the system was a revelation!
- Each time I fully accepted our reality, I leveled up. Resistance and rigid expectations had only held me back. But acceptance? That’s where growth happened. It made me stronger and reminded me that I mattered too. I could stay steadfast for my family without losing myself in the process!
Sharing these stages feels vulnerable. I was always responsive to my child, but I wanted to be the mom who just knew—who affirmed, who understood, who got it all right from the start. I wasn’t. But looking back? It’s pretty badass to know that even when life wasn’t feeling fair, I was—and am—the woman for the job.