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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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

A note on strategies for brushing teeth

Brushing teeth has always been a huge demand for Little Miss M, one which causes a great deal of extreme demand avoidance. A short 90 second task, which a great deal of us do without any difficulty or thought, has her anxiety and fight, flight or freeze mode going through the roof because it is something we are told we MUST do each and every day and with PDA, MUST is something the brain fears. When PDA wasn’t on our radar, we tried sticker charts and rewards and we told her the reality of what would happen if she didn’t look after her teeth and although she clearly didn’t want to have unhealthy teeth and wanted to keep them clean, she just couldn’t bring herself to brush them, even once a day, let alone twice and if pushed her anxiety would escalate quickly. Little did we know that we were making it an even bigger demand for her by doing these things as she felt huge expectations from us to comply. It’s been the cause of a lot of worry and stress for us as parents and the cause of a lot of stress and anxiety for her. I thought I’d share with you though what has helped us to delicately balance the need for her to have healthy teeth against the anxiety and demand avoidance teeth brushing causes her…

We’ve tried every type of toothbrush going and have found an Oral B round head electric toothbrush has the most success, not only because Little Miss M likes that it does the brushing part but because the brush area is small and touching less of her teeth than a manual one (as sensory sensitivity plays a part in her avoidance too).

Another hurdle we had to overcome was the taste of the toothpaste. She has a very limited diet and rarely eats strong flavours and disliked the taste of mint from the beginning. We’ve tried a variety of different flavours and she found them all to be too strong in taste for her. She now uses OraNurse unflavoured, non-foaming toothpaste and this has made such a difference to her ability to tolerate teeth brushing.

We do whatever we can to distract her from the fear of the demand to brush her teeth so avoidance can be bypassed. At the moment we listen to her choice of pop song while she and I brush together and that is proving to be quite a good distraction. We have to change it up all the time though when novelty wears off. We’ve role-played dentists or other scenarios of her choice where I brush her teeth, I’ve told her stories while she brushes, I’ve done funny voices, made up silly songs, we’ve pretended we’re on a quest and teeth brushing is a task we need to complete to fulfil the quest, we gave the toothbrush a name (Mrs Toothbrush) and personality and I did its voice and asked her questions about her day while brushing (she formed quite a bond with Mrs Toothbrush who even came on days out with us for a while), we’ve watched TV while brushing, brushed in every room of the house, had a favourite toy do the brushing, brushed without toothpaste for a time, all sorts of things which appeal to her and distract her from the fear response her brain has to the demand. We re-visit some of them now and again too as they can work again after a while of not doing them.  She still negotiates and it can take rather a long time to get the task done and there are often days when she is completely avoidant but doing something fun to distract her is her best chance of being able to brush her teeth, along with us remaining patient and flexible. 

We also only aim to brush teeth once a day but don’t insist she does it when anxiety is really high or when a distraction doesn’t work and demand avoidance escalates (we may return and try again later but we remain flexible). We don’t have a set time it has to be done, nor do we make it something which has to be done before going out or going to bed as it was preventing us from leaving the house and going to bed. It’s just something that is done at some point in the day if we can and we’ve found this reduces how big a demand it feels.

It can still be hard not to stress over, when we’ve had a run of difficult days and not managed it, but I try not to otherwise she feels my stress and it becomes an even bigger demand and her avoidance becomes stronger. We’re fortunate that Little Miss M will visit the dentist so we make sure she has regular check-ups which help to ease my worry.

I hope this has been helpful and given others some ideas to try around this incredibly difficult every-day task. Do you have any teeth brushing tips or ideas not mentioned? If so, feel free to add them to the comments as it’s great to have more strategies in our pockets, ready to try.

The Wizard’s Wish or How He Made The Yuckies Go Away – A book for children about Emotional Freedom Techniques

I’ve been sitting on this book recommendation for a while now, waiting for the right time to introduce it to Little Miss M. The wrong time would only trigger demand avoidance and potentially close the door to introducing it forever (or at least a very long time because of the fear associated with it). After our conversation this week about anger and masking, she’s open to ideas about how she can safely express her feelings so now felt the right time.

I’ve learnt about Emotional Freedom Techniques (EFT) or tapping as it’s also known from the wonderful Lindsay in her Facebook group Peace With PDA and have seen first-hand how effective tapping can be since using it on myself. If an emotion is bothering me or holding me back, I tap on certain energy points, acknowledging how I feel, accepting that that feeling is perfectly natural and use positive words or affirmation to free myself from the negative effect of the emotion and always feel much better. I also find it really effective in bringing clarity to a situation.

Peace With PDA is predominantly a group for helping parents to use EFT to manage their own emotions and difficulties but Lindsay has kindly touched on using EFT with children as well and recommended this book as a way of introducing them to the concept of tapping.

I downloaded the e-book from Amazon onto Little Miss M’s tablet today, a bargain at £2.21. You can also buy it in print and although she loves books, I thought having it on her tablet would make it even more appealing to her as her tablet is one of her favourite things and it’s easily assessable for her to look at wherever we are (her tablet comes everywhere with us). She was curious as to what I was doing so I told her I was downloading an e-book for her to learn about how she can magically let go of her anger and fears. She was intrigued but not yet ready to look at it (she was keen to play with Daddy though). I left it at that and contemplated whether to raise the subject again today or wait until she decided to look at it of her own accord. I gauged her mood and decided to raise it again this evening and asked her if she wanted to read it with me tonight and she said she’d like to do it there and then.

We read the story (she did the voices of the villagers and told me how I should do the wizard’s voice) and it being on her tablet worked really well as it’s somewhat of a novelty for her to read e-books. She enjoyed the story which imaginatively explained how tapping on parts of your body makes yucky feelings go away and she was really engaged with the idea of her finger being her magic wand and using the magic spell words to make the ‘Yuckies’ go away. We very briefly talked about how we could both use the magic spells the wizard taught the villagers, to help with our anger and stress and we’re going to make a map of the points to tap on tomorrow as a reminder for us both.

I’m really hoping the book has planted a seed for Little Miss M to access this simple but effective self-help tool and I’d highly recommend it to anyone looking to do similar. I’m conscious of it becoming a demand if I don’t carefully word how I encourage it’s use but am hopeful that with gentle indirect reminders of the story and how the wizard used it and lots of modelling doing it myself, she’ll start tapping away the yucky feelings she has.

A note on overload and burnout

Life is such a rollercoaster with PDA. Little Miss M can tolerate and cope with life in one moment but cannot in another, going from one extreme to another (and sometimes back again) in the same day. Sometimes we go for days with relative stability, finding a balance that works, before something happens which overloads her and stops her from coping, while other times she remains intolerant to life’s demands for an extended period of time, living on edge and finding everything difficult. There are also times when she just seems to burnout and isn’t able to tolerate what she usually can and life becomes incredibly difficult for her.

Our PDA-friendly lifestyle allows Little Miss M to have a lot of downtime, drastically reduced demands and autonomy where possible and we use lots of distraction strategies to help her cope with necessary demands and the things she want to do. This has a positive impact on her quality of life and wellbeing but it does not eliminate all of her difficulties and anxiety. There are still times when she doesn’t feel in control, moments of uncertainty, difficulties with social interactions and her emotions and other difficulties and confusions associated with ASD which all overload her brain and cause anxiety.

Her anxiety levels fluctuate all the time, depending on how many of these scenarios she encounters and how often (which affect her tolerance of demands and behaviour day-to-day) and over time the overload and anxiety accumulate and take their toll on her. Every so often this results in her experiencing periods of burnout where her brain is exhausted and unable to function as it usually does and all of her ASD and PDA difficulties are heightened and become even more difficult than usual as her ability to cope with life drastically reduces.

It will look different for everyone but here are some key features for Little Miss M during burnout:

Demand perception and avoidance are heightened as is anxiety and she’s more likely to explode with anger and frustration very quickly when she feels a loss of control.

She worries about everything and is nervous and on edge for a prolonged amount of time which really plagues her, making each day stressful and scary for her. She needs a lot of reassurance and comfort but it doesn’t really do much to settle her in the moment.

She really struggles to speak and put some sentences together and stammers and repeats words. I think this is the reason she reduces the number of full sentences she uses when asking for things and will instead use one or two word commands. She also has a hard time processing what people say and often doesn’t answer or respond or takes extra long to do so.

Her sleep is rather restless during this time and she becomes even more demanding of us and needs our full attention all the time.

When burnout happens, she needs time to recover and extra support. We’re sympathetic to her worries and fears, no matter how often she repeats them and do as much as possible on her terms in order to give her brain as much rest from additional overload as possible. Her mood can be low as she reflects on her difficulties so we do lots of things to boost her mood and increase her confidence and self-esteem by making her feel valued and loved just as she is. Once her brain is well rested it begins functioning as usual again and her ability to cope returns and her tolerance levels increase.

It’s no wonder burnout occurs from time to time, her brain is frequently overloaded due to perceiving so many everyday things as a threat of danger and her constant need for absolute control and certainty of her environment and those in it is mentally exhausting. Also, while she’s still young and figuring stuff out, emotional dysregulation frequently overloads her too. We hope in time that emotional maturity and understanding will make a big difference but in the meantime, we want to do all we can to help reduce burnout now by reducing overload and the effects of overload and hopefully encourage good habits which will continue to help her in the future as well.

So how are we doing this?

We reassessed our lifestyle and looked at all the things which contribute to overload.  

Her lifestyle is already geared towards supporting her autonomy and individual needs which we’ve talked about in A note on education, A note on demand avoidance and A note on the need for control and certainty but after some reflection a couple of months ago, we identified some areas where we could make some more adjustments in that respect as well as to reduce the amount her brain has to process at any one time so overload won’t accumulate as quickly.

For us this includes:

Re-looking at the demands which are still present in her daily life and reassessing if any more can be cut out or approached differently and thinking about how to make necessary demands even easier so they have less of an impact on her. This also includes thinking even more carefully about the things we say and trying to cut out language which can put pressure on her.

One demand which has always caused a great deal of anxiety is going to sleep. She has always been her most demand avoidant at bedtime and we’ve been very flexible around this while still trying to steer her towards going to sleep at a ‘reasonable time’. After much deliberation we decided to relax even further on this and let her decide when she goes to bed which could be as late as midnight and falling asleep at 1am. This has removed A LOT of anxiety and overload for her and made bedtime a happier time. Consequently she sleeps later in the morning to get enough sleep and unless we have to be somewhere at a particular time, we leave her to wake up naturally. This one adjustment has had such a positive impact and we’ve since discovered Delayed Sleep Phase Syndrome which we suspect may be a factor as well as demand avoidance.

Addressing how we can help social interactions to become less anxiety inducing for her (see A note on social difficulties).

Having an assessment of her sensory profile to find out if anything sensory is leading to overload and so a sensory diet can be introduced to help. This is something we’re still looking into arranging.

Being more mindful about how much information we give her so her brain isn’t overloaded with unnecessary info which she can’t process. This includes choosing the right time (when she’s not already processing something else or stressed) to talk to her about something or ask her a question so she has a clear mind to process the information, keeping it simple and giving her time to process what we say without pressure to respond straight away.

She’s said that she becomes most stressed when we’re in a hurry so we’re making sure we take our time with everything and don’t hurry her (unless absolutely necessary). We thought we were already doing this but on reflection we found there were still times when we needed to rush or we’d ask her to hurry so we’re much more mindful of this when we plan (allowing even more time to leave the house for example) and when she takes a long time to do something (not asking her to do something faster and allowing it to run it’s natural course and take as long as it takes). There are of course times when she does have to go a bit faster for safety or when time has run out for example but we’re very careful with the language we use in these instances to minimise the pressure she feels.

We’re encouraging lots of things which relax her brain and give it the respite it needs as often as possible. [This can be difficult due to demand avoidance of things we suggest but we plant seeds and place things within sight and do them ourselves and then she can choose to do them if she wants to].

For us this includes:

Encouraging repetition which is incredibly calming for the brain because it knows exactly what to expect next so can relax. She naturally loves repetition of things which she likes so this is an easy one but we value how good it is for her and encourage it when we see she needs some respite and downtime. Examples include re-watching a favourite episode of a TV show or YouTube video, re-reading a favourite book, role-playing the same familiar scenario again and again, listening to a favourite song over and over – anything familiar which remains constant so her brain doesn’t have to wonder what is coming next and can relax.

We’ve learnt how relaxing proprioceptive input is for the brain through this video. Little Miss M loves to move, even when she is sitting so we are encouraging this more. We bought her a rocking chair so she can be soothed by the rocking motion whenever she likes and she enjoys going to our local park to swing and bounce on the bouncy sea-saw for more physical movement (this is often in her pyjamas because the demand to get dressed to go out is too much and doing so would defeat the object of going there).

Anticipation anxiety and worries about uncertainties cause a lot of stress and overload so we’ve introduced this concept from GoZen where she can imagine her own still and quiet place whenever she is worried or thinking a lot about things outside of her control. She really engages with videos on YouTube and this one captured her attention because she loves to draw and use her imagination. This has been particularly good to use at bedtime when many worries can come out, even just wishing it was morning already.
[She has made the concept her own by the way and creates a new ‘place’ each time we use this.]

Drawing and colouring really calms her so we have a variety of colouring pages and drawing paper in easy reach along with an endless supply of her favourite pens and encourage it when we can see she needs some respite.
[It’s taken trial and error to get to this stage – colouring books initially caused a great deal of stress when the colours showed through to the page behind so we photocopy the pages for her to colour now and she feared the pens running out so we have multiple packs stored away to replace them when this happens. We also keep all of her work in folders as throwing it away would upset her too much. Once we figured these factors out, colouring and drawing became a great source of relaxation for her.] 

How’s it going?

It’s been a couple of months now since we started addressing this and Little Miss M has fully recovered from the burnout which prompted us to and we’ve seen a definite reduction in how frequently she is overloaded. Life still throws scenarios at her which cause overload but by eliminating the ones we can with these lifestyle changes and helping her recover from the times she is overloaded, she’s literally in a better state of mind and is gradually becoming able to ‘do’ more in terms of days out and activities with her friends.

Burnout may be something she’ll continue to experience throughout her life due to the complex way her brain works but we hope these adjustments will help reduce the frequency with which it happens (if not prevent it at all) and we’ll continue to monitor and adjust our lifestyle and her support as needed so she has the very best opportunity to thrive.

A note on stress

When Little Miss M’s anxiety levels are particularly high she becomes very demanding and intense. She’ll want my constant attention whether it be by playing her games or watching her do something, she’ll need to be in constant contact with me, either holding hands, sat extremely close, her leg across my lap etc. or calling out to me constantly to do something or to come when I move to another room. She’ll need everything done for her and will constantly ask for things in a particularly demanding way.

She does some of these things in moderation most days as anxiety fluctuates but when they are particularly obvious and intense, I know it’s a sign that her anxiety and stress levels are very high and she’s in survival mode and only has enough executive function and energy to express her needs in this way.

During these times my stress levels increase too, my patience is stretched and it’s exhausting. The lack of personal space is difficult as well. It’s hard to stay calm when all this builds up inside so I try and express how I feel wherever possible. Saying it out loud or writing it down is good, sharing it with others is even better and respecting my natural feelings to the intense pressure I’m under is so important. It’s only natural to feel stressed under intense pressure after all and acknowledging that and giving myself a break for feeling it helps me to more easily express it, which allows my stress to reduce so I am in a better state of mind and can continue to support Little Miss M to deal with her own natural feelings to her own intense pressure so she too can reach a better state of mind.

You see, she’s only doing what comes naturally to her very specific make-up, just like I am. Her feelings might display differently to mine and not in conventional ways and may be triggered more often than mine and by less obvious pressures but they are no less real and deserve the same respect and compassion mine or anyone else’s do.

I value my moments of stress because they give me a glimpse into how Little Miss M feels and help me appreciate how difficult things can be for her when conditions aren’t just right for her needs.

The stress caused by the pressure to be constantly available for her during this time and the lack of personal freedom I feel, must come close to the pressure she feels from everyday things which are out of her control.

I see life through her eyes for a moment and this inside knowledge serves us both well. She’s better understood which leads to more compassionate support for her and I apply the compassion I have for her to myself, ensuring my own feelings are honoured and respected, making everything easier to deal with.

There’s lots of other ways to combat stress but, for me, this mind-set is the most beneficial. Living with PDA can be challenging and stressful for both parent and child but acknowledging and respecting these natural feelings and being able to express and share them with compassionate support enables us to push past the resistance stress can cause in the moment and using my own experiences of stress to see my child’s perspective keeps the compassion flowing for her and for myself.

 

 

 

 

A new strategy we’re using to distract from anxiety and feel in control

I came across this problem solving idea via GoZen: Anxiety Relief for Children last week and thought carefully about how to introduce it to Little Miss M as a tool to help her with any difficulties or ‘problems’ as she calls them. Being mindful of demand avoidance, I decided to mention in passing that I’d seen a cool way our fingers can help us with problems and she really engaged with it.

We drew around a hand each and set to work thinking of our biggest problem solving strengths (I explained this to her as things we’re really good at which can help us with problems). In true Little Miss M style she made it her own by adding finger nails to the hand and drawing pictures to represent her strengths until she got to her thumb, then she wrote the word (kind, spelt cind). I wrote my strengths down too.

This is what she came up with

Finger Strengths
From little finger to thumb:

Imaginative
Good ideas
Being active
Creativity (with her drawings)
Kindness

It was a wonderful insight into the strengths she sees in herself and she was delighted with herself for writing the word cind which gave me a lot of joy to see as did her awareness of the things which help her when faced with problems. 

I explained that whenever we have a problem or difficulty with something we can choose one of our finger strengths to help us solve it. She came up with this little saying which happens to have 5 words too (one for each finger) “choose a finger to help” and enjoyed chanting it while moving her fingers along with the words. She really loves it when she can link numbers to things.

Since then, there have been a few times where choosing a finger strength has been really helpful. Here are a couple of examples:

The first time we used it, she wanted to watch a particular set of adverts she remembered being on a DVD but didn’t know which DVD they were on. She started to panic at this uncertainty, overwhelmed by the fear of not knowing. I started wiggling my fingers and said “I wonder which finger strength could help with this problem” and repeated her chant. This distracted her from the panic and made her smile. She named each of the strengths but couldn’t decide which would help so I suggested maybe the ‘good ideas’ finger might help this time and she said “I know! I could try all the DVDs until I find it”. “What a good idea” I said and as we tried each DVD she was much more calm and in control of the situation. It took a few tries to find the right one but each time it wasn’t the right one she remained calm and focused on trying the next one. Usually, if I’d come up with the solution, she would have panicked more with each failed attempt. This strategy really did give her the feeling of control.

We next used it a couple of days later when she was finding it particularly difficult to go to bed. It was approaching 11pm and demand avoidance was in full swing. She not only didn’t want to go to bed, but didn’t want me to go either. I explained to her that I was very tired and really needed to go to bed soon and asked if one of her fingers could help solve this. She was keen to use a finger but didn’t know which one could help so I ran through them all in a silly and expressive way and together we eliminated the ones which wouldn’t help and were left with ‘good ideas’ and ‘kindness’. She then said “I know! Seeing as you are so tired, I’ll be kind and let you go to bed now while I finish what I’m doing and then I’ll come up”. “That’s very kind” I said. She joined me upstairs about 10 minutes later.

As with any strategy, I’m careful not to over use it because the likelihood for success will reduce if it’s used too often and only use it for Little Miss M’s benefit (when she is distressed or panicked by something, when she wants to achieve something but is struggling or with necessary demands).

So far though, this new strategy seems to help distract Little Miss M from her anxiety and gives her a feeling of control over a difficulty or demand and I love that it’s so simple and the approach used can easily be adapted and tailored to suit each child.