I don’t know if I’ve heard very many “we once were a chaotic household, and now we have peace!” stories when it involves PDA. I’ve been a PDA advocate for around a year and a half and much of what I share are the collective experiences of other families, their struggles and successes, my own struggles and successes along the way, but it is all very piecemeal.
Where my own family is now has been a slow, step by step accumulative effort as I try to heal from domestic violence and complex PTSD from my attempts to live neurotypical standards for over 30 years. I have THREE kids who are PDA/autistic, two who are ADHD on top of that, I live and help care for my dad who’s physically disabled and who I highly suspect is autistic as well. My brother lives with us to share caregiving and household duties.
In the last week or two I’ve seen us take a subtle but impactful shift in how we all function.
I feel now like the struggles I have in my parenting boil down to what everyone struggles with raising kids (child is hungry, tired, bored, too much time with brothers, too much time alone, so on) and less us constantly triggered.
This particularly struck me as we visited the pool today and I accidentally left behind my middle child’s favorite goggles. I looked and looked and all I had were the slightly smaller pair in my bag.
Y’all, this kid didn’t miss a beat, “That’s ok!”, grabbed the other goggles and went for a swim.
Now there’s no guarantee he’s always going to be cool with not having something he expected (he’s still a kid after all), but the fact that he can be ok AT ALL is a friggin miracle, this you all will know.
I feel like this miracle is because I have had the privilege (yes, it’s a privilege!) of getting to adjust our lives to low demand. We school from home, work from home, we have access to the community to through resources from the state, I get occasional respite from trusted friends/family.
Not everyone has access to these though, and what makes PDA households “special” is that it does not take much to tip all of us over into complete dysregulation as a family. Our window of tolerance is smaller because of our collective disabilities.
So not only am I very excited to see us function and mostly regulated day to day, this miracle fuels me to have PDA recognized here in the states and worldwide.
We NEED to be seen; we are drowning!
So many families are isolated, misunderstood, judged, forced to jump through ridiculous hoops to prove they are sincerely trying.
I don’t know what opportunities are in my future but you can bet your ass I’m going to utilize them to speak for everyone and push with what resources I have to make us seen. I knew I wasn’t born bull headed for nothing, I’m trusting God knows what He’s doing.