PDA Action Day 2018: Positive PDA

One year ago today we celebrated our first PDA Action Day and it was the day we decided to start this blog and share our experiences of Pathological Demand Avoidance with others. Little Miss M has had many challenges and difficult times to overcome since then but like I said in last year’s PDA Day post, by focusing on the positives as often as we can we hope to keep moving forward towards the best outcome possible for her. It therefore feels fitting for us that the PDA Society chose ‘Positive PDA‘ as the theme for PDA Action Day this year!

My husband and I have always celebrated Little Miss M in all her amazingness, particularly on this day each year, as it also happens to be her birthday! 

There’s so much more to our (not so little anymore) Little Miss M than the PDA features which define her autism spectrum profile but being a PDAer is a big part of who she is and the features which have brought her such difficulties have also brought her strengths and qualities which we greatly admire.

Everyday things may be hard for her to do but given freedom and the right environment, she can do amazing things instead.

She may fear uncertainty but knows what she wants with absolute certainty and has the courage of her convictions.

She’s the most creative and imaginative person we’ve ever met and can captivate people with her imaginary worlds, stories and games.

She has the biggest heart and feels deeply.

Her thirst for knowledge is unquenchable and her perspective on matters brings new meaning to our life.

She’s funny and loves to laugh.

She’s spontaneous and savours moments and experiences.

She’s kind and caring.

She gives the best hugs.

She has huge talent for drawing and impressions and notices and appreciate every detail.

She’s strong, smart and beautiful.

She’s an inspirational teacher and has taught us so much!

She’s unique like a snowflake and she shines like a star.

Being parents to such an amazing human being has taught me and my husband a great deal as well and living alongside PDA has shown us how to be better versions of ourselves.

We’re stronger, more determined and resilient because of PDA.

We have more empathy and compassion.

We’ve learnt to truly love unconditionally and not to sweat the small stuff.

We look to understand rather than judge.

We’ve got to know some wonderful people in the PDA community and have made some lovely friends.

We know what truly matters.

We’ve embrace the whole of PDA, the difficulties as well as the strengths – we wouldn’t change our daughter for the world (that doesn’t mean we wouldn’t love to be able to take away the difficulties PDA brings her but we accept and love how those features present in her) and with that acceptance of who she is and our love and support she is beginning to believe in herself and her ability to cope with those difficulties – I asked her if she’d like to say anything for PDA Action Day this year and this is what she wanted to share ~ 

Lily's PDA Day Quote 1

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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).

 

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.

A note on Pathological Demand Avoidance and the price of a day out

Recently Little Miss M overcame demand avoidance and we managed a rare day out. We went to a science museum which we’ve been to a handful of times over the last 3 years. She’d heard they were planning some changes there and wanted to go again before this happened. It was also an opportunity to use their animation equipment to create some stop motion films which she loves. She thoroughly enjoyed herself and the exhibitions and gadgets there but it came at a price.

Getting ready to leave in the morning was difficult. Despite her wanting to leave the house early to get there as soon as possible, demand avoidance kept instinctively slowing things down. We skipped breakfast, teeth brushing and doing anything with her hair and just focused on dressing and going to the toilet. These two tasks, choosing which toys to take to animate with and leaving the house took 2 hours. During that time she was excited and keen to go but also anxious and demand avoidant. We took our time and didn’t rush her, though she still excused herself from the things which needed to be done, delayed doing them and distracted us with chat of her special interests. She managed to do them eventually though and we were on our way.

The journey there was actually really chilled. She was in the mood to play some games on her tablet and listen to some of her favourite music and this time gave her the chance to de-stress a bit from the anxiety around getting ready and leaving the house. We even had a hold up on the way due to a car on fire on the motorway but she was so in the zone of what she was doing, she didn’t even realise. We’d packed a breakfast of her favourite foods to eat on the way but the demand was still too difficult to overcome and she continued to avoid it.

We arrive at the place and she spotted a unicorn Beanie Boo in the open plan gift shop/reception area which she absolutely had to buy. It was the kind of deep-rooted need which if un-met would have become an obsession or fixation which causes major distress. We bought the toy and instantly she went into role-play mode, being ‘Uni’s’ tour guide around the museum. She was overwhelmed with what to do first and with all of the people around and her lack of control over what they were doing. This role-play helped to give her a sense of control over the environment as she could control the outcomes. We wandered around for a bit in this role-play, not really settling on any of the interactive exhibitions there while she tried to get her bearings. We suggested going to the animation area as we thought she’d feel more comfortable and settle there but accepting the suggestion was too much of a demand so we carried on walking around at her pace while she tried to overcome demand avoidance which was preventing her from being able to do any of the fun activities around her.

After a while she suggested we go to the animation area so we headed up in the lift but by the time we got there, even her suggestion of doing the animation became a demand as she then found lots of reasons not to do it straight away. We went with her flow and just walked around upstairs for a while, not really stopping on anything and could see she was becoming more and more anxious about doing what we had gone there to do. As we walked towards the animation area she noticed all of the equipment was being used by other people. The fact she would have to wait to do the animation seemed to help her overcome the demand avoidance around doing it, however the demand to wait took its place and the uncertainty around how long the wait would be made it almost unbearable. She did very well though all things considered. It helped to talk about what her animation story would be about and keep distracting her from the wait with talk of her ideas and general silliness.

Eventually her chosen machine was free. Anxiety was high by this point though and it took her a little while to be able to compose herself and start (she spent a long time talking about the equipment and how it worked and arranging her toys and props). She then asked for her ear defenders as she was struggling with the noise of the people around her on top of the anxiety overload and they seemed to really help as she was able to make a start. She meticulously filmed and edited 4 stop motion animations all together.

After the animation we mentioned leaving soon, so she could get used to the idea. This too was a demand and demand avoidance meant she found lots of reasons to delay the transition including wanting to eat for the first time that day as well as wanting to do some of the other activities on offer there which she had been unable to do earlier. She withdrew into role-play again but as an avoidance strategy this time and became a baby, a tour guide again, a Goddess and a farmer who needed to take us on tours of various other parts of the museum and it took over an hour-and-a-half of flexibility from us and gentle negotiations to be able to overcome the demand avoidance and leave.

She wasn’t able to take any instructions from us on the way back to the car however as her anxiety was incredibly high at this point and distractions and humour weren’t effective. This posed a couple of safety issues in the car park, around moving cars but we managed to get to our car in one piece, albeit stressed but grateful she had been able to walk there (something she has not been able to do due to demand avoidance numerous times before).

The journey home wasn’t as chilled as the journey there. Anxiety was high and even the slightest thing not going to plan or not being exactly how she needed it to be caused a lot of distress and upset including some explosive behaviour. Unfortunately her headphones started buzzing so she wasn’t able to zone out with her DVD player as planned. A cold bottle of water helped to ease things though and she watched her DVD without the headphones on in the end.

Back home with chips and she had de-stressed somewhat, though needed to feel a sense of control over her environment again which displayed through her being controlling and demanding of us for the rest of the evening (and the for a few days afterwards too). We placed zero demands on her until the demand for sleep came around but this was much later than usual with lots of extra requests for things at bedtime. She eventually fell asleep and stayed there until late the following day.

The exhaustion and anxiety from the day out took a great deal of sleep and downtime to recover from and the majority of everyday demands couldn’t be tolerated for the days that followed. It also left her wanting to do more but unable to manage it because in spite of all the difficulties and anxiety, she had an awesome time and so wants to do awesome things every day, however, the realisation that she can’t manage it frustrates her and this affected her mood for a short time. Communicating and processing language was also affected and she found it hard at times to be clearly understood.

My take home from the day was a reminder of just how incredibly hard life is for her and how incredibly proud of her I am for achieving what she manages to achieve. Accessing ‘typical’ experiences comes at what feels like an unfairly high price and I wrote this to acknowledge just how much effort it takes her and others with PDA to overcome demand avoidance and to take part in experiences which so many of us take for granted.

A-Z of Demands is complete

The A-Z of Demands is now complete. You can view the entire series via this link: A-Z of Demands. There’s also a downloadable PDF version and the option to purchase a printed set at cost price plus postage.

I’m working on another A-Z series (A-Z of PDA) which covers the features and characteristics of PDA as well as recommended support strategies. I’ll share one letter of the alphabet each day again and it will begin soon… x

A-Z of Demands

Over on my Facebook page I’m starting a series called A-Z of Demands. Each day I’ll post a different letter of the alphabet, highlighting an everyday demand which, in my experience with my daughter, can trigger extreme demand avoidance and a brief description of my understanding of why. I’ll use the hashtag #AtoZofDemands and put them in this album so they can all easily be seen and shared.

For those of you who don’t use Facebook, I’ll also upload each day’s demand to a dedicated page on the blog called A-Z of Demands (there won’t be notifications sent to you when I do, so remember to visit the page regularly if you want to follow along).

I’m also working on an A-Z of PDA series and have a few other ideas around this theme which I’m planning to do in the future too.

Here’s the first one to get things started – A is for Agreements

A-Z of Demands - A

More information about PDA and advice on how to best support an individual with PDA is available on The PDA Society website:
> Families: https://www.pdasociety.org.uk/families/strategies
> Teachers: https://www.pdasociety.org.uk/education/teachers-guide
> Practitioners: https://www.pdasociety.org.uk/pro…/awareness-matters-booklet

 

A note on the fear (or intolerance) of uncertainty

My beautiful girl is so stressed by the fear of uncertainty at the moment. Demand avoidance is one thing, one very difficult and challenging thing, but this is something else all together. I cannot reduce life’s uncertainties like I can reduce demands and no amount of distractions will take her mind off the uncertainty she is feeling.

She ordered a toy with some Christmas money from the internet. It’s a very special toy which she felt a strong attachment to from the moment she saw it on YouTube. We found one and ordered it but then the uncertainty began – when would it arrive? It didn’t help that this particular toy had a longer than usual wait time (7-10 days). This in itself caused a great deal of anxiety but it was the only option we had for buying this particular toy. It actually took 6 days to arrive in the end but for the whole of that time she wondered and worried about when it would arrive. Would it definitely come of the 7th day? What time of day would it arrive? Would it be there when she woke up in the morning or could it come in the evening? Would it arrive at all or get lost? What if we were out when the postman delivered it? So much uncertainty.

She didn’t sleep well for the 6 days either. She’d struggle even more than usual to fall asleep from the anticipation of whether tomorrow would be THE day (despite me reminding her it hadn’t been 7 days yet). Then she’d wake up early, hoping it was the day it would come. She even woke up one night having dreamed it had been delivered. She talked about what I should do with it if it arrived while she was asleep and then reminded me over and over. Every knock at the door had her jumping up, thinking it would be the toy and the disappointment was difficult for her to cope with when it wasn’t.

All of the uncertainty increased her anxiety through the roof and as a consequence all of her other difficulties were heightened for the 6 days. Demand avoidance, emotional dysregulation, mood swings, communication were all negatively affected.

The toy arrived yesterday and she was thrilled. Unfortunately that wasn’t enough to reduce her anxiety though and it was the most explosive day so far. I had hoped today would be different and she’d be able to start recovering from the effects of the uncertainty but it now seems she is constantly worried about this toy getting lost or stolen. I have of course reassured her that neither will happen because our house is secure and we’ll take good care not to lose it when we go out but she’s uncertain about this and keeps asking if it will be safe.

I just have to keep reassuring her and wait for her to come to the conclusion herself because in the past that is the only way she has settled over such uncertainties (becoming certain about something in her own mind) and be patient and loving with whatever comes while she gets there.

There has been interesting research by Newcastle University which concluded that intolerance of uncertainty could be the root cause of PDA anxiety and I think this could well be the case. Little Miss M needs to feel absolute certainty as well as control. I wrote A note on the need for control and certainty last year and it was helpful to read it back again this week x