Trigger warning: mention of child going to hospital; medical stress; carer experiences.
This was written in July 2022.
From September 2021, our family went through things with our child I would never wish on anyone.
While we had already gone deep in understanding neurodivergence, and in particular, what things are so particularly important for a PDA child (Pathological Demand Avoidance profile of Autism – look it up), we were yet to really descend into our personal hell. I’m not going to write about all of that here, because it’s not my story alone, and it’s so profound and so personal I’m not sure it ever belongs on a page.
The reason I write this background is because that time in our lives became the point of departure for everything else after. It was a death. It was trauma. It was and is living with grief. Slowly, we have come into a resurrection. The phoenix rising from the ashes.
Part 1. One Monday in July 2022
I took my kids and our support worker to visit friends I have known since I was a kid (let’s just make that the end of a sentence and breathe out because if you really know us, or have a family like ours, you will know this is an achievement all on its own). My friends now live in a semi-rural place with a horse, dog and chickens. We’ve visited before, and my beautiful PDA boy (I’m going to call him Ninja here as that’s one of his current pseudonyms) found a sense of home there. He has wanted to return. Since the previous visit, Ninja and our friend had spoken and planned that at the next visit he could help her take their horse for a walk. This horse is extremely peaceful and safe. That happened, and it was awesome. Ninja was fully calm, focused, reliable, peaceful. Peace and confidence.
But also this: they have one black horse, but at the moment they also have a skittish white horse, living there for a few months, and we hadn’t met him before. My friend said she wouldn’t put him anywhere near children. However. Ninja approached the fence to see the black horse, and put his hand out to be sniffed, which the black horse did. Then, the unexpected thing. The white horse leaned over the fence and reached out to Ninja, then breathed on him for a while, before Ninja instinctively patted his nose. Ninja was completely calm and respectful, like they had each other’s measure. They just had this moment of something happening. My friend and her husband just exchanged this look of total amazement – they said have never seen the traumatised horse interact with someone like that. The someone was my boy. Powerful.
Part 2. Tuesday.
Our boy has had a lot of trauma in his short life, and anything medical is terrifying for him. This isn’t about the medicine or the complexities. It’s about my evolving role as his advocate, the trauma I hold as a result of that work (let’s be real and call it work – it is), and the actual difference I make to what he goes through. In particular, the difference I made in how things happened on Tuesday, when he had a hospital admission. The point in sharing this is to say to other *difficult parents*, keep on. Keep asking why, or why not. Keep saying no. Keep bashing on doors and making the respective powers that be FIND the options.
The medical details aren’t important. I can just say I well and truly pushed the envelope in asking for things to be done differently – putting proposals to the medical team that they had never offered. This meant that this admission was put off for a number of months while I kept asking questions. Turns out, I could make things happen. Turns out, there were less traumatic options for my boy and us. Yesterday was still really difficult but it was BETTER. Many people won’t see or understand the many tiny things that the parents of PDA kids, or many other types of disabilities, fight to change for our kids to spare them further trauma. If you do this, then you know the importance of all these tiny adjustments.
A vignette for your enjoyment in this tragicomedy. I was talking to a doctor and nurses without my child nearby, getting everything clear with them. A woman with a badge saying ‘Children’s Services therapist’ got very keen to insert herself into our case. I pretty quickly figured out she would be a disaster and I basically told her I didn’t want her. She was clearly disappointed that I wasn’t going to let her use ‘all her own resources’ to interest and distract my child. I hate to think what they might have been. When she pushed her agenda again, the doctor who was actually working with me on all of this turned to her and said ‘no, Mum’s got everything they need’. That was a surprise.
I couldn’t avoid my kid hurting and him being so sad. But I did shorten and minimise the extent of it.
Peace to you all – the kids, and the parents making peace possible.
Further links on PDA:
A Thousand Thoughts 