I find it fitting that during Introduction Week of Blaugust, I would need to take time away from daily blogging.
Hi, my name is Jesse, and I am the full-time parent to an autistic kid with Pathological Demand Avoidance (PDA).
I have never said that on the internet before. But it feels like it is finally time to discuss what is happening during these moments when I need to disappear. Because it helps make sense of why I can go a month of streaming non-stop into being unable to create content for weeks on end.
Calm and Collected all the time
The person my child tends to need most during the day to co-regulate and feel safe is me. This is why I am a full-time, stay-at-home parent. I am the nervous system for a six-year-old.
We are currently experiencing a sleep disruption caused by the stress of the last month of house projects. Routine is essential to the kid feeling safe and in control. Breaking the routine can be devasting to them. While they did alright during the housework, the stress from masking has finally caught up to them. Yesterday, we had a 4 AM wake-up and a 15-hour full-on parenting day for me. They could not handle more than one person speaking at any time. This means I have very little time for myself or the things I want to do.
This is ok. I am fine. This is my job. This is also why I spend more time on social media than most people. It is where I find connection and can ground myself.
It is also why we play many video games together to cope with the stresses of life. There are set rules which are simple to understand and explain. Games are also easy to turn off if the demands get too high. The sense of being in control is essential to those with PDA.
The Ableism Abounds
Having a child with needs that don’t fit the current societal environment becomes quite isolating for us. Questions and anything perceived as a demand may trigger their fight or flight. This does not lend itself well to the rules of the world. It also makes you see how arbitrary and controlling the world around us truly is.
Every day we are bombarded by demands.
“Don’t do that.”
“You can’t go there.”
“Why are you doing this?”
Take a moment to think about how your world would change if every question asked of you could trigger your fight or flight response. This is how I must navigate the world to make a child feel safe. I anticipate and deflect questions from adults who are entirely unaware of the ableism they embrace daily. This includes family members who just can’t be bothered to change their behaviour and outlook on the world around them.
I guess I simply want a more kind and patient world for my kid.
Hi, I am Jesse. I am a full-time parent, and the kid is awake, so I am off to work. I’ll try this blogging thing again tomorrow.