The last six months

Does it ever feel like too much to show up to your life as a parent of a PDA child or teen?

Parenting and caregiving while also navigating:

• Figuring out your own nervous system or neurotype
• Caring for (or worrying about) aging or ill parents
• Handling siblings’ mental health struggles and their own needs
• Chronic health conditions, perimenopause and/or your own burnout
• Facing an economic and political landscape that is heart-wrenching and changing at a scary clip

It can be debilitating and overwhelming. And this is exactly how it has felt for me the last six months.

The truth is, I haven’t wanted to show up on social media or do my weekly live “Coffee with Casey” sessions because I have been having a hard time.

There have been so many things going on in the world and in my life that felt hard and confusing.

Among them, I have been super focused on supporting my younger son William (6) as he has struggled more with basic needs and his nervous system.

We have been moving fully into the PDA Lens as an experiment with William. This has resulted in many hours of sitting on the floor next to him while he plays Minecraft, and delivering specific foods (the variety of which were dwindling) on command. 

As we leaned into the type of caregiving we had to do for our older PDA son Cooper during the two years he was in burnout and recovery, things have started to improve for William. Yet, as much as I have wanted to share with you all the nitty gritty details, I have decided to keep much of it private. His teachers and friends’ parents follow me on social media, and he deserves his privacy.

In the backdrop of William's recent struggles, my mother's continued journey with cancer has been weighing on my heart and mind daily. And as I have found it harder to manage sensory input and social interactions, old questions have resurfaced:

Am I Autistic or am I healing trauma?

Is this “unmasking” or am I just 43 and a quirky human who is done with bullshit, exhausted, and finally setting boundaries?

Is it burnout or perimenopause? Or both? 

And then finally – and especially within the work that I do – do I have to know?

Can I relax into the uncertainty and just BE?

Honestly, as I have grappled with these questions, the thing my soul has desired most is to throw away my smart phone and my adult responsibilities, and cocoon myself in a small European village.

I have been fantasizing about wandering along cobblestone streets, eating non-processed food that someone else makes for me, and just being in a space where no one needs or knows me.

Where the headlines about what is going on in the United States feel a little more distant.

Of course, like most of us, I don’t have that luxury.

Instead of moving to a village in the south of Spain, I have been ending my workdays early before the kids get home from school and cocooning in my small bedroom in a small town in Michigan.

I shut the blinds, turn on my “wind tunnel” of white noise (a loud fan and a noise machine), and disappear under my weighted blanket with my rice bag over my face.

30 minutes later I am often jolted out of this when Cooper shouts from downstairs “Mama, I need hot Cheetos!” or William climbs into my bed playing Minecraft on his ipad, volume on high, unwilling to put on headphones.

So what has helped me through these last six months?

First, I have finally allowed myself to be confused and exist in the in-between. Life can just be uncomfortable and hard and confusing for as long as it needs to. And I can show up anyways and keep going to the best of my ability even if it is messy, uncomfortable, and deeply imperfect.

Lately, I have been putting my hand on my heart and reminding myself that I am just a soul having a human experience. Something I used to do daily in the hardest times with Cooper. 

Second, I have been reminded - once again - of the importance of meaning, especially when my own autonomy is diminished.   

One of the biggest shifts I had to make while caring for Cooper in burnout five years ago was to begin locating the meaning and purpose in my days based not on external outcomes, but on how I showed up in a situation I couldn't control. 

This return has led me to re-read Man’s Search for Meaning, and to remember to focus on how I show up each hour and each day even if I never get to that village in Spain, even if my kids don’t ever get “easier”, and even if my nervous system never “heals.”

I have been asking myself these questions: 

Did I show up as the best version of myself in this day, given everything that life has thrown at me?

And did I do this even if today sucked, involved listening to screaming, and was topped off by a hormonal/stress migraine?

And on the days I can answer yes, that is what I have been hanging my hat on each night as I go to bed.

I’m often tired, a little sad, and wishing things were different in some areas of my life.

But I put my head on my pillow feeling some peace in knowing I did the best I could within the constraints I faced.

I hope you can find some peace doing the same each night. We're all doing our best, and that's all we can do.