Activate or Accommodate? The Shitty Choice of Parenting a PDA child

I haven’t written properly in a couple of weeks, which is the longest I’ve gone since starting this blog. The last few posts I published were written out in draft a while back — I hadn’t actually started any new writing in a while until last night. And this is probably a depressing read so I am sorry about that.

And there isn’t one particular reason for not writing, but a whole host of them. The main one being: I just haven’t had the mental capacity to sit and write.

Usually, something happens and I get this urge where I need to let it all out — and I just sit and blast out the writing. As soon as it’s all out, I feel a sense of relief. But the last few weeks have been different. My head is full of stuff… but I can’t get it out.

I’ve spoken in the past about the emotional rollercoaster I’m on, and lately that rollercoaster has felt so much more extreme. I swing from days where I feel like I can do anything to days where I feel like I can do nothing. And there is nothing in between.

If you were an outsider looking in, you’d see a mum who has done the research. A mum who has stepped outside of her comfort zone.
Made friends in similar situations from all over the world. Joined groups.
Put in the work to really understand her child.

You’d see a mum who looks like she finally has her shit together.
Who’s somehow holding down a job. A relationship.
Life seems better with her son. Her daughter is thriving.
Things look good. Things are good.
(At least I hope that’s what you see.)

We’ve gone from believing my son to be autistic, then ADHD… and now I know that he is autistic with a PDA profile. Everything I’ve read about PDA fits my son. Everything. So I know that’s who he is. I don’t need a diagnosis to tell me this — although we are on that waiting list, and I’ll be sharing all my evidence with the professionals when the time comes.

PDA (Pathological Demand Avoidance) is a nervous system disability. In a nutshell, my son’s nervous system doesn’t function like a typical person’s. He is in a constant state of anxiety. Everything causes him anxiety. And the more things that are piled on him, the more anxious he gets — reaching the tipping point so much faster than a typical child. If you want to learn more about PDA and read about how this fits my son then this link will do so:

PDA traits – PDA Society

What helps him is control. But he’s seven. So we have to navigate this very fine line every single day.

There’s a woman in the PDA community who’s a bit of an icon — she’s what you’d call the leading expert on PDA. Every parent listens to her research, her strategies, her tips. And there’s one video of hers that has stuck with me. I’ll link it below, because she explains it far better than I ever could.

At Peace Parents

Ultimately, as a parent to a PDA child, you have two choices — and both choices are shitty.
You can choose to activate your child.
Or you can accommodate them.

And with every choice you make, there’s a cost-benefit analysis running in the background.

Do I activate or accommodate?

Do I choose to do the laundry now and activate my child, but at least we’ll have clean clothes to wear? Or do I accommodate him and leave the laundry — who cares if we have clean clothes?
Sounds simple, right? But as a way of life, that is hard.

There are times when my daughter wants something specific washed for an event, so I have to do the laundry. But equally, there are times when activating my son won’t work out well for anyone in the house.

This is why I say both choices are shitty. And both require a lot of work.

It’s a juggling act… but on a far bigger scale than the average parent can imagine. Every decision comes at a cost — to someone. And it’s usually me doing the calculating, minute by minute, all day long. Each everyday moment has the potential to activate him. Every single one needs accommodations. Yes, there are days where things just happen — but that’s only because of the days (and weeks) of preparation I’ve put in beforehand.

So while an outsider might see a family all pulling together to make things work — because we really do — inside my head I feel awful. Every day I am reminded of the shitty choices I have. Activate or accommodate.
Every day I have to make that choice. Both are hard work. Very hard work.
And this is with every single thing we do. Every single thing. From the moment we get out of bed.

Inside my head, I constantly wonder how much longer I can keep doing this. Keep making the choices. Keep holding it all together.

Every day, I just think to myself: just get through to this day.
Then when I get through that day, I think: okay, now get through the next.
And so on. And so on.

How I’ve had to survive is by detaching. I haven’t cried in ages — instead, I’ve entered a new era. I am detached. I am an outsider looking in on my own life. And I’m not sure that’s any better than crying.

That detachment gets me through the bad times — it’s a kind of protection. But it also means I don’t really feel the good times either. I’m there, but I’m not really there.

Maybe I’m in some kind of process. I’ve been through the grief — the mourning of the parenting journey I thought I’d have. Now I’m in detachment — survival mode, just getting through the days.

What’s next? I honestly don’t know. Acceptance? Burnout? Enlightenment? Whatever it is, I hope it comes with coffee.

But while I’m in this strange, emotionally blurry space — my son is in such a better place. He’s more regulated. Happier. He feels safer. And maybe that’s the best cost-benefit analysis I’ve ever done.

Still, if I had a pound for every time I’ve run one of those cost-benefit calculations before 8am, I could probably fund the entire CAMHS waiting list myself. And if you see me in the same clothes for 5 days running you now know why!!!!