A space for us

Five years ago I met another mom with a PDA daughter around my older son's age (they were 6 at the time) who also lived in Michigan.

I remember we found each other on a Tilt Parenting Facebook forum where I posted about PDA, finding a service dog, and added the details about where we were located in Michigan.

I got lots of great responses, but one stood out: "Hey, I don't know anything about service dogs, but your son sounds exactly like my daughter and I live 15 minutes away."

We began texting, a constant stream that only stopped while we were sleeping, and the laughter and tears started flowing. Every paradox, every quirk, every pattern that didn't make sense, and every moment of grief when the world didn't understand - it was reflected back to me in this mom's experience.

After the kids were in bed, I would drive to sit on her front steps or porch and we would connect.

It felt like suddenly I had found a safe island in a big ocean, one that finally belonged to me and our experience.

The connection soon turned into my first project in the PDA space. In 2021 we recorded a podcast called "PDA Parents" - just 8 episodes - in her garage on Sundays during the pandemic. (That link will take you to the podcast webpage, where you can listen to it and see our blog, or you can also find the show in most podcast players.)

We sat 15 feet away from each other in snowpants during the Michigan winter and just talked.

I learned how to edit a podcast and blog. This gave me meaning while I was deep in the trauma cave with a burned out child, and without my career in research in Washington D.C.

We imagined our small endeavor like a radio signal, similar to the one you hear in All The Light We Cannot See. Two moms, healing together and sending out a signal to other parents who shared our unique experience.

Parents from all over the world started writing in. They were finally seen. There was finally a resource that reflected their experience.

This was always my intention.

A safe island for parents.

A radio signal without static.

A conversation in a garage with a trusted friend.

A place that for parents like us didn't exist before.

Healing, laughing, crying, making progress, moving the needle, no matter how cold it was outside or how many people judged us and thought we were crazy.

I believed then, and I know now, that PDA is not the same thing as "rational demand avoidance" in Autism. It is not just another way to describe ADHD symptoms, or "extreme demand avoidance" that can come from all sorts of other root causes (anxiety, ocd, executive functioning, sensory, etc.).

PDA is its own neurotype. And the parent experience is different.

Some PDA children are also Autistic and/or ADHD (like at least one of my sons), and some are not.

But if we don't recognize that PDA's impact on basic needs access and behavior is due to a unique root cause, our families will continue to be gaslit, given strategies that actually don't help, not get the diagnoses we need, and continue to be told that we cause the behavior.

The tools needed to support a PDA child or teen are not the same as those for Anxiety, OCD, Autism, or ADHD.

And in fact, the same is true in reverse.

Strategies to support PDA are not necessarily the best fit for other neurotypes if the child isn't also PDA. This includes a "low demand lifestyle," which I believe, without a clear understanding, can sometimes make things worse in your home.

What I believe about PDA is controversial in some circles, and over the years I have gotten a lot of pushback.

I've endured trolls, cancelation attempts, and lots of misunderstandings. These have hit my nervous system hard, and I've wanted to close up shop many times.

But amidst all the misinformation, confusion, and social media shouting, I think it is increasingly important to tell the truth - based on what I know about my own family, and have seen in the thousands of families I've worked with.

I think that's the best way I can support parents.

So, here is a new podcast episode where I dive a little deeper on this topic.

I hope it feels like a radio signal, like you're in a conversation with a mom of a PDAer on your front steps.

It is from an Instagram live I did with butterflies in my stomach and pressure in my chest from anxiety, but it needed to be said because I know this information helps families and changes and saves lives.

I hope it supports you to see your child clearly so that you can finally move the needle and find the peace and stability in your home that you desire.

So that you can turn back to your intuition and what you already know.

And trust that you are not alone, there are other parents just like you, on your side, and rooting for your progress.