2018 PDA Society Conference: thoughts and summaries

Mr M (my husband and Little Miss M’s Daddy) attended the PDA Society Conference last week (on 18th April). I had planned to go but Little Miss M wasn’t up to the change of routine my going would create for her so he went instead. He was really looking forward to the day and it didn’t disappoint!

He said that talking to other parents was interesting, enlightening and life-affirming and he gained so much perspective from all of the talks and the insight shared by adults with PDA – which he said was brilliant. He thought that the PDA Society trustees and volunteers were brilliantly dedicated and all the hard work they put into bringing the day together was there for all to see.

I had promised the PDA Society that I would write a summary of the conference to share with people so, not wanting to let them down, I arranged for Mr M to voice record the talks and I’ve written everything up from those. I have to say – everything was so incredibly informative and helpful, it was impossible not to include it all so the summaries have ended up quite detailed.

Although I didn’t attend in person, I got so much out of the talks and I hope the summaries will give others who couldn’t attend the conference the opportunity to as well. The day was full of invaluable advice and we now have many new ideas and strategies which will help us to support Little Miss M better and I’ve also had my sense of solidarity renewed, remembering we’re not alone on this journey.

We are massively grateful to The PDA Society for putting together such a helpful and inspiring event and to all the speakers for sharing their insight and knowledge so clearly and openly. Thanks to you all.

The summaries of the keynote speakers talks can be viewed on the PDA Society website by clicking here (link will open in a new window).

 

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Toolbox of strategies: a personalised PDA-friendly visual aid

Little Miss M would like me to tell you about her toolbox which is full of strategies to help her when things get hard…

She recently told me that life is hard with Pathological Demand Avoidance (PDA), especially the worries and stress which keep interrupting things. There are lots of strategies which I know could help her to relax and reduce her stress and worries but simply suggesting them to her is most often perceived as a demand to do them and demand avoidance prevents her from benefitting from them. As a result her worries and stress are becoming overwhelming for her.

I thought about what could be done to help her access these strategies in a PDA-friendly way so she feels more in control and like she has options to hopefully reduce how overwhelmed she feels by stress and worries.  

I remembered what Ruth Fidler said at the NAS PDA conference last year about visual clarification – “it can be helpful for some children with PDA but will need adapting so it is indirect and has elements of choice” so I thought that having a visual toolbox full of strategies to choose from when she’s finding life hard might indirectly remind her of how to help herself in these moments.

I decided to make the toolbox to have ready to present to Little Miss M as, although she loves art and crafting, she rarely crafts things with a defined design and I was worried that demand avoidance around doing it would hold up having this aid ready to try. It’s just folded A4 card with a card handle attached to the back and a big label which actually has her first name on it [Name’s Toolbox] so it’s clear it belongs to her (this may be too direct for some PDAers and may need a more generic label to de-personalise it but for Little Miss M this type of ‘personalisation’ isn’t a demand (yet) and owning things appeals to her).

I made a list, which I printed and individually cut out, of all of the calming strategies which she has inadvertently used and enjoyed at various times in the past and ones which are known to be calming or stress reducing which I thought might appeal to her. I didn’t stick them in until after I presented the idea to her so she had choice and control over which ‘tools’ to include in her toolbox. [As it was she chose them all.]

Toolbox collage

I presented the idea to her very carefully so not to make it a demand and hoped the novelty of it would be appealing enough to help too. I chose a time when her anxiety was low and I put loads of emphasis on the choice aspect of the toolbox and that it was her toolbox to use as and when she wanted to.

It’s early days but so far she’s chosen to use it at least once every day, at a time when she has felt stressed or worried about something. One time or another she’s chosen all of the strategies and they have all helped her to relax and forget about her worries at the time. She’s thought of some new strategies to add in too and although worries and stress still interrupt things, she does seem less overwhelmed and it seems to have given her a sense of empowerment, to know she can help herself to feel better.

She told me we should share this on Notes on PDA for others who have PDA to know about, so here it is. Please share with anyone else who may benefit from creating a similar visual toolbox – it can be easily adapted (I chose a toolbox as toolboxes and tools happen to appeal to Little Miss M right now but it could easily be something else – a book, a bag, a pond, a Pokémon pokeball, any concept which appeals to the person it’s intended for) and filled with personalised strategies. You could also add images to the strategies for more visual clarification if appropriate. For info, here are the strategies currently in Little Miss M’s toolbox:

Toolbox strategies

* I wrote about introducing Tapping/EFT to children in the following post if you’d like more information: The Wizard’s Wish or How He Made The Yuckies Go Away – A book for children about Emotional Freedom Techniques (this is a link to another post on the blog which will open in another window).

Thanks for reading.