Moving into 2025 with a clear vision

Years ago I had a vision.

It was during a "Havening" session with my coach Afshan Tafler, while we were working on supporting and healing aspects of my nervous system around "visibility" and taking up space as a business owner. 

I had been facing a particularly difficult bout of online harassment, trolling comments like "you are a terrible mother," and even targeted cancelation campaigns that tried to smear my character and ethics.

It felt like too much for my body and heart, and I wanted to throw in the towel on what I was trying to build with At Peace Parents.

As the tears started to come, Afshan paused, and helped me re-center. She asked me to come back to my "deep why" - What drives you, what makes you show up? 

I blurted out - almost as if the words didn't belong to me - that I wanted to change the entire medical and therapeutic system so that parents could actually get the help they need and have choices that actually served them.

It was a mixture of rage and love that came out. Rage at the system that had failed my family and love for my son and how misunderstood he had been, even by me. 

When I created At Peace Parents, I felt that by starting with parents - giving them the information they needed, providing a logic that made sense, and a unique framework for stabilizing their family - I could support a grassroots movement that would ripple out and make the medical establishment take notice. 

The Vision

Sometimes it feels like my vision for the future is far away and unattainable. There are days that are disheartening, and there is a lot of pain to hold in the work that we do directly with parents. Pain that I have felt as a mother and lived through just like you. 

However, my ultimate goal is stronger than the hard days. The idea that someday, when parents learn their child or teen is PDA, they would be held with care and support.

That they would be presented with multiple options for insurance-covered or government-sponsored support that was trauma-informed and appropriate for their unique PDA child or teen.

Ideally, these options would include programs that teach parents how to truly support their children, as well as PDA-affirming respite care so parents would have time off to maintain their own nervous system health.

So that we as parents aren't the only accommodation available. 

In this future, there would be medical providers, therapists, and teachers well-versed in how to support families and the children and teens with this nervous system disability. 

This is what drove me to create the parent-training program and free content I wish had existed when I realized my son was PDA - to empower you and your family to carry the movement forward.

Because none of us can do it alone.

Where we are now

Today, when most families present the idea of PDA to a practitioner or medical provider they aren't believed and are sometimes blamed for their child's behavior.

If they are believed and given an autism diagnosis, here in the United States they are directed to Applied Behavioral Analysis (ABA), considered the "gold standard" treatment for autistic children and often the only option covered by insurance. 

Not only does ABA often make things worse for PDA children and teens, the "evidence base" that the medical/insurance industry points to in defense of covering and promoting it exclusively is not actually that strong. For example, according to a meta-analysis of 770 studies of ABA, none of the studies take into account the quality of life of the autistic child or teen, or their family.

Don't get me wrong. I've worked with parents of PDA children who have done ABA and found it helpful (often because their excellent practitioners "bend" the therapy to meet the child where they are). I'm not saying that ABA shouldn't be an option for the families who want it. 

The point is that parents need options that actually help their PDA children and teens, and take the family system into account.  

Current Research 

Outside of our teaching and the programs we provide at At Peace Parents, over a year ago I partnered with a neuropsychologist at the University of Michigan's medical school to move research forward on PDA and further develop approaches that can truly help accommodate this not-well-understood nervous system disability. 

We first conducted a survey with a sample size of more than 700 parents, to provide us with the data we needed for a better conceptualization and measurement of what PDA actually is.

The preliminary statistical analysis is showing evidence that PDA is not just outsized anxiety or demand avoidance, but also impacts access to basic needs (toileting, sleep, hygiene, eating).

This is an enormous finding, and it bolsters my hypothesis - based on what I've heard from you and thousands of parents - that PDA isn't as simple as "an anxiety-driven need for control," but is deeper. It truly disables our children and teens from accessing the things they need and the life they want. 

In a second study, the University of Michigan independently evaluated the impact of our Paradigm Shift Program™ with a cohort of dozens of families.

While there was no control group to compare to (yet!), preliminary findings of this study are statistically significant and show improvement along thirteen measures of parent well-being, including but not limited to: anxiety, caregiver burden, depression.

(The research will also be evaluating the impact of the program on the new measure of PDA that we are developing...stay tuned.)

And finally, a third study will be a qualitative study based on interviews with PDA adults, to increase understanding - in a systematic way - of the internal experience of the PDA nervous system. 

Again, we have a long way to go.

Publication of these studies - the first two are expected in 2025 - is not going to get PDA recognized by health professionals and insurance providers overnight.

It will take more years, and more studies.

And it will take parents like you. 

Each time you choose an option designed with your unique family in mind - be it in selecting a pediatrician, a therapist or a school - you send a message.

You make clear, with your footsteps and your wallets, that you won't settle for the one-size-fits-all approach to raising your PDA child. You demonstrate your ability to reject the "gold standard" when it doesn't actually help your PDA teen. You show your family deserves better and that parents aren't turkeys. 

That's why I do the work I do.

It's why I put my often awkward and introverted self out there on TikTok, even though I am 43 years old and needed to have my au pair teach me how to use the app. 

It's why I keep moving forward even when I fumble my words, stress over mean comments, or doubt that I am good enough to be a leader. 

Because I care deeply about getting you, your child and your family to a place of stability.

And then I want to see what vision we can all accomplish together.

When you are ready to ripple out YOUR contributions and gifts from that place of peace.