The worst day of my life

“Today was the worst day of my life,” Cooper said to me last Saturday night, lying on the couch, looking sad and deflated.

“I’m so sorry,” I said. “I know how hard it’s been for your brain today.”

Saturday was the day of my younger son, William’s, fifth birthday party. It was a day that no matter how much we accommodated Cooper, the day was going to be all about William. He was the center of attention, his 20 classmates were at the gymnastics space we rented, and the trunkful of presents we drove home were all for him. 

As you know, one of the primary root causes for going into fight, flight, or freeze for a PDA child or teen is a loss of equality - when the survival part of the brain perceives that someone or something is *above* them. This is often happening without their conscious awareness and occurs even if their “thinking brain” knows that in the grand scheme of things, things are “equal” because ultimately Cooper will have a birthday soon too. 

So we did our best to accommodate and circumvent these moments of “inequality” on William’s birthday. For example, Cooper’s dad took him along to pick up the cake at the bakery and bought him a secret “don’t tell your little brother” doughnut. And while they were out he took him to a toy store so Cooper could pick out a present for himself, to make him feel more “equal” to the birthday boy. 

We had also let Cooper invite one of his own friends to the party, and we gave them the autonomy to leave the party before it ended and go to our house (it’s two blocks from the gymnastics venue) to play at home in the backyard.

And compared to every birthday of William’s since his birth five years ago, this was without a doubt the most painless birthday party day we’ve had. 

Yes, Cooper had been “bored” and frustrated some at the playground that morning, activated by the anticipation of the party. And he equalized a bit when William opened his presents, trying repeatedly to play with the new toys his way, and taking them out of William’s hands, prompting William to whine and then wail. 

But we’d separated the boys enough to get through the bulk of the afternoon before they - just a bit earlier than usual - zoned out on YouTube (with our supervision - they usually watch silly puppy videos and football shorts) until the evening dinner-bath-bedtime routine began.

That’s when Cooper told me it was the worst day of his life. I was sitting with him on the couch, coregulating as he watched YouTube. And while I could think of many, many days that had been far worse for me, I was so glad he was communicating his experience with words. 

“Yeah,” I said. “A brother’s birthday is the hardest day for PDA brains. It brings out ‘Venom’ a bunch.”

Cooper agreed, and I could see him tear up a bit. 

Venom is what Cooper named his threat response when he was 5 years old. It allows him to put words to the physiological experience of when panic takes over his body, and also facilitates talking about his nervous system disability without shame or blame.

Naming the threat response is one of the tools we work on in the fourth module of the Paradigm Shift Program - “Affirmation” - and I teach parents a practical framework for children and teens to understand their disability in ways that protect their self-concept. It can help address some of the sentences my son and other PDA kids say when they don’t understand why their body and brain reacts the way it does:

I’m a bad kid

I hate myself

Why did God make me this way?

At the end of William’s birthday, we were all exhausted. Yet I was so proud of Cooper for articulating that things were hard for him, instead of screaming, yelling, running away, throwing things, or destroying his brother’s things like he had in the past. It demonstrated the self-awareness he’s developed, and gave me the opportunity to help him process and normalize the challenges of his disability that still exist even now post burnout.   

It is also a reminder of the incremental and long-term nature of progress with a PDA child or teen. The indicator my husband and I both laughed about was the following: “That was such a great birthday! It wasn’t harrowing!”