The first time I ever wrote my thoughts down about how challenging life was in our household, I never expected it to lead to so many new experiences and meetings with like minded people who would be equally as passionate as I was about improving the systems that were in place.
That there would be other families out there who were being just as misunderstood as we were.
I certainly knew nothing about blogging, PR or the sheer influential power of social media.
I had no experience of political campaigning or thinking strategically.
I was only at the start of a journey of really discovering what Pathological Demand Avoidance (PDA) really was and how my mindset on parenting was going to have to change.
The only thing I did have was the passion and the will to want something to change.
Six months later I took my eldest daughter to her first paediatric appointment, armed with as much evidence as I could possibly accumulate, where the locum doctor said that he would get eyebrows raised but he felt it was important to discuss PDA in his assessment letter.
His hands were tied because locally he was unable to diagnose this profile, but he wrote that every person involved in my daughter’s care needed to use strategies that were specific to a child with PDA as ‘her disability had become a barrier’ to ever being able to access an education.
Sadly, my daughter still went into crisis from the damage of being misunderstood and from the trauma of being unable to fit into a system that wasn’t able to acomodate her.
Fast forward to 2018 when she accompanied me on an organised PDA Call For Action in Westminster (a peaceful protest which hoped to raise some awareness and clearer pathways to access appropriate support).
I also contacted my MP, Sir Mike Penning, who suggested meeting with us to discuss the campaign and it was then covered in our local newspaper, see here.
Sir Mike offered us his full support with the campaign and suggested to put forward an EDM.
I had no idea what that actually meant!
After a bit of clarification 🤦♀️ I found out it stood for an Early Day Motion, which is a way to draw attention and gauge parliamentary support; the aim hopefully to get PDA debated at the House of Commons.
My heart did a great big leap in the office with pure excitement and gratitude to someone so senior who was taking this matter seriously.
He engaged with my daughter and even joked that we should have brought one of our t-shirts for him to wear.
Sir Mike offered my daughter his hand as he showed her through the building, offering kindness, as he made conversation with her and gave her a quick tour – as a parent I was extremely touched by the support we were given as his constituents.
And true to his word, our MP and his constituency office, set up the EDM 1669 which gained signatures (showing some cross party support).
UPDATE 2024…
However, this EDM has since run out of time, meaning it was finally closed (sadly the sequence of events that were Brexit and then the COVID lockdowns took precedence).
We hope to push forwards and start a new one with more support soon!
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