Improving Outcomes. A post for PDA awareness day. May 15th 2019.

Dreaming is where we create what we want.


This years theme for PDA day is ‘Improving Outcomes’. I was inspired by this title, so here is my contribution.

When I first learnt that my daughter and possibly other family members fit the description of Pathological Demand Avoidance syndrome, the first thing to strike me was, what an awful long name for a condition of mind. How do I explain this to my loved ones and people in our lives? What does it all mean any way? I would imagine that most people have thought and are still thinking the exact same thing. Each day, more and more people are awakening to this condition. Each day new people have their light bulb moments and jump online to make sense of it all.

Over the years that I have been writing about PDA, it has been lovely to watch the community grow and to find a comfortable and harmonious space where other people of similar mind sets and circumstances can come together. New blogs pop up, conferences spread across the world. People join globally in their common interest and quests for information and connection.

I see that we are improving outcomes every day. Each kind message on a support page, each new learning about a strategy that worked to help the PDA family in a moment of confusion or anxiety. A new perspective, an uplifting story. These are the tiny day to days that gather like a snow ball until it is impossible to not feel hope that one day, all people will know about PDA and PDA will be celebrated and respected.

My dream is that we won’t have to wear a condition of mind like a name badge at an awkward meeting with strangers. We will be able to scan the room and home in on those we feel affiliated with, but a the same time, those who do not think like us, will know enough to be able to nod and adapt accordingly to whatever the person who is PDA needs and believes. Just as autistic people have had to adapt and mask in order to fit in and not stand out in a neuro typically nominated world. I dream of the day that differently minded people become the normal and those less able to have deep empathy and feelings for the world at large become the minority. I imagine the creations of those who dare to dream of a world without conflict and restrictions. I picture the power of all those who do not conform to outdated rules and freedom mirages. I delight in the day that the walls we have built around ourselves fall away. Exposing the true freedom that in fact, all humans crave.

PDA and the ‘newness’ of our thinking and understanding of people who think creatively and determinedly is, in my mind going to be a process. Slow to gather numbers after it’s official birthing into awareness in the 1980’s, the internet has helped us share information and find others who are like us. Being able to blog like this, opens up so many channels to faster and faster sharing. This is great news as far as awareness goes, but I think that true understanding, ie the human part, will take longer. And that’s OK. we don’t need to rush and get all paniky about it. It will evolve naturally and as it should.

I do think though that there is so much power in improving lives with simple sharing of love and kindness. We don’t all need to worry and bang on all the doors of all the Docs as soon as we suspect PDA. We need to take our time, allow what comes and choose in each and every moment the best thought we can around whatever situation we find ourselves in.

People say to me, how do you do it Mel? How do you keep a smile on your face and carry on? We also have crippling Obsessive compulsive disorder as well as a PDA mind. Life is very challenging for us. I tell them this.

My thoughts are mine to own and chose. No one else has control over them. In my darkest moments I have learnt to absorb anxiety, acknowledge it, tell it I hear it, ask it what it wants, soften it and let it go. I know it will pass and it is there to guide me. I relish every good thing that happens, no matter how small so that these are the things that build up and give me something to focus on. I imagine and feel in my mind that the dream I want for myself and my daughter are already here. When they come into my reality I rejoice that I have this magic kind of power to enjoy life even though day to day we are very restricted and not able to do all the things that others can. I remind myself that a lot of people are running around doing and being without really knowing what it is they are doing and being for. I’d much rather be me.

If we all have this power of thought and visualizing the futures that we want for our PDA friends, then let’s start now. We can improve the outcome of a child who refuses to eat at the table tonight by questioning why we are making that child sit at a table. We can improve the future perception of PDA by dreaming that all humans will know and understand each other without judgement or the need to change anyone.

As we move into another year of PDA awareness and give thanks to the PDA society and all those shining a bright and beautful light on PDA lets be conscious to improve outcomes in every tiny way we can.

Thanks for reading. Love to you all. LOVEPDA. x





2 thoughts on “Improving Outcomes. A post for PDA awareness day. May 15th 2019.

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