The PDA Society’s Keys to Care

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The PDA society’s keys to care document is one I often share to give a brief overview of PDA and explain a little how people could help Edward. I thought I’d take some time to share a few specific things we have done to ensure he thrives.

See the person, explore their interests and engage positively

Edward is almost 5, and I think there have been 3 key interests he has had. Firstly Cars (the Disney films) then Robot Wars and now it is Pokémon. These interests become all consuming. He pretends his bath ducks are Pokémon, we talk about which Pokémon might be experts at teeth cleaning. When we are out for a walk we battle as Pokémon before we are able to continue up the road. We are able to talk about things by using role play, which means Edward is a little more open to doing things he may otherwise not.

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Walking up the road as a Frog Pokémon

Our home educating life is completely unstructured but all sorts of learning happens within his area of interest. Categorising Pokémon, talking about their strengths and weaknesses and Pokémon maths (this book is brilliant) have all featured.

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Counting Pokémon

Recently we have created the most streamlined Lego car to transport his Pokémon toys. By being a little bit creative but embracing his interest, Edward becomes much more open to engaging with new experiences. It also helps when attempting to visit new places to talk about the best Pokémon to take with us (water Pokémon to go swimming, for example).

Approach PDA as you might caring for a panda – create the environment which enables individuals to thrive

This is something that we have tried really hard to implement in our lives. In this instance I’m going to talk about Edward’s immediate home environment. If you were to visit our house, you may find it slightly unconventional. We have made it a safe and comfortable place for him where he has fewer every day demands. We don’t have large furniture (no sofa or dining table) as we found ourselves constantly reminding him not to hurtle into them/jump off them. The solution for him, at the moment, was to remove them. We have just this week purchased an enormous beanbag for sitting to, and jumping on and off. We eat on a large picnic mat on the floor. We had considered making our spare bedroom into his sensory room putting his swing, monkey bar, wobbel board etc. in there. Instead I felt strongly that his sensory needs couldn’t be segregated in this way and these items are movable throughout the house wherever he needs them. As I’ve mentioned in a previous post, he also has his little hideaway cupboard where he loves to go. Yes, unconventional but so much better for all of us, allowing Edward the freedom to relax in the one place totally designed for him.

Indirect ways of wording requests, or even silence, helps with completing tasks

Reverse psychology used to be really effective, although a little less so now, and Edward does still become suddenly more inclined to do things on the rare occasion I’ve just made a hot drink! When being given direct instructions, his answer is always going to be no, regardless of however appealing the request may be. His response is a result of panic and anxiety. I therefore find myself providing a little information, for example ‘it is sunny, the shop/park close at whatever time’ and then just leave it with him. Time pressures do not work, and are totally counterproductive. Asking Edward to rush, results in a panic response, causing him to freeze. If time is a consideration, I find other ways to help things happen. Follow the leader and Simon Says (but with a Pokémon name) can be effective although not reliably so.

Sanctions and consequences (including rewards) do not work and make things worse

It is important for me to remember that when Edward doesn’t do something, it isn’t because he is being obstinate or defiant, it is because his anxiety will not allow him to. Therefore if I then removed something as a sanction he would be helpless and confused. Rewards are also not an incentive to encourage Edward to do anything. If he is able to, he will. A reward would not change this ability.

He doesn’t like direct praise, but I’m always sure to share things he has done when he is in earshot. These don’t have to be major things, I ensure I let him know that the little things (which aren’t little to him) are great achievements too.

Enable some control and choice, allow for negotiation

This is something we find ourselves doing constantly. Edward currently throws soft toy owls into a laundry basket before he goes to bed, the number of times has increased steadily over the past few weeks. He gets a choice of 5 or 10 times and always chooses 50. This is his way of putting some control over his bedtime routine (which deserves a whole other blog post itself!) and he is in control, meaning a smooth run up to bedtime. If we insisted on a lower number, there would be distress, meltdown and a lot of anxiety. This strategy works for us, and as long as we give Edward enough room to manoeuvre with his choices, he keeps that freedom he needs.

Processing can take longer than expected take and allow time

This is really fundamental. As I referred to earlier, time pressure leads to panic. Before offering Edward information, or asking questions or instigating a conversation, I always says ‘let me know when you’re ready for me to talk’ he can then finish his thought process/game/TV programme without worry that it will be interrupted. I tend to speak in short bursts so he isn’t overwhelmed with chat and the bits he needs to know come first. Often I say things like ‘pasta or rice cakes’ without any more than that, then leave him to decide without further input. Some days we have longer, more detailed interactions, but I have learnt to distinguish those times he needs less from me.

Fairness and trust are central, if things change, be clear and honest about why

After a period of finding our way, Edward can now be sure that we won’t do anything or go anywhere against his will. He has the freedom to choose when his hair is brushed, when he goes in the car, when he gets dressed. We live in a way where this is totally possible and deliberately make very few arrangements that are time sensitive. This has lead to a trusting relationship where he knows he can trust I will do the best for him. If something unexpected does occur, I will explain to him honestly why it has changed. Frequently the instigator of changes in plans is Edward himself.

Collaboration, flexibility, variety and humour all work well

Humour plays a big part in helping Edward feel safe. We play on the fact that different people are a bit silly sometimes if they make a mistake and he loves to do ‘Wacky Wednesday’ (Dr Seuss is a genius!) We use this as a way to tidy up, and then put a few items back in a strange place for his Dad to find when he gets home. We vary our strategies as novelty wears off. This is a bit trial and error, and I try to ensure I change things before they get monotonous for him. This is a skill I’ve not yet perfected! Edward loves novelty but things definitely move fast and I have to find new ways of doing things on the spot. I frequently find myself saying ‘ah I’ve got a really good idea of what we can do’ while my brain is rapidly thinking of something fun and safe to provide a distraction before Edward gets bored and distressed.

If you share one thing about PDA today, the Keys to Care document by the PDA society is a fabulous one.

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To those who are learning

I thought I’d share a little bit about how we got where we are and how we discovered PDA.

Edward has always been a child of opposites. He goes from seemingly happy to being obviously frustrated in no time. It is like he has a switch and with no warning all the calmness disappears. He is sensory seeking but also he is sensory avoidant. He shouts or he mumbles with no in between. He loves loud music and he can’t filter out any noise.

For a range of reasons we suspected autism from fairly early on, but were never wholly confident in this as it didn’t quite fit. Autism, Aspergers and other similar profiles all had bits that didn’t quite describe Edward. Therefore the traditional autism strategies that we had been using weren’t able to help him.

Quite by chance, last May, I stumbled across Peace with PDA on Instagram. Her posts are amazing and insightful. It lead me to do a lot of reading. I found blogs and books and Facebook groups. I discovered Jane Alison Sherwin’s amazing book and cried with relief as I read her words. I don’t think relief explains how I felt enough. The new found knowledge we are gaining every day is allowing us to create an environment where Edward can thrive.

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This new knowledge gives me a little more confidence that we are doing the best for Edward. I no longer hesitate quite so much when making awkward requests in order to ensure Edward is able to access things. Once we found the right path, life improved immesurably. We are learning every day, from the best teacher. Books and blogs have been endlessly reassuring, but no-one has the insight or knows the right thing to do as well as Edward does – and he is pretty good at letting us know when we get it wrong, but also when we get it right.

Being Edward

P.S. The Learning Curve have described a part of their journey here

To those experiencing the aftermath of a busy time

Lately I have seen a lot of mention of ‘the coke bottle analogy’. In essence, in the same way that if you shake a bottle, when you open it it will explode; when a child with PDA/autism has demands placed upon them, they experience anxiety or sensory overload, which builds up over a period of time. They will eventually explode when they reach their safe environment. It is explained really clearly here.
However hard we try to keep them to a minimum, every day puts demands on Edward. Using the toilet, choosing what to eat, what clothes to wear, being asked what he would like to do; all these raise his anxiety levels. Any kind of mention of time pressure visibly affects him and I can see that we need to find a way to negotiate this calmly.

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In a ‘normal’, every day situation, we have, over time, found some really effective activities to help slowly release the fizz that has built up. Edward likes huge sensory input. He has a swing, monkey bar and wobble board all of which are really effective. He also likes being in small spaces. We have recently converted the cupboard under the stairs into a hideaway for him.

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When we have to manage external influences, be it a visit somewhere or an unexpected blip (recently we had no internet which meant we couldn’t complete our usual bedtime routine), the anxiety soars and the release is uncontrollable. In these instances, we are still learning how to manage this in order to keep Edward safe and try to help him feel in control.

I am so grateful that our lifestyle means that there are very few occasions where Edward can’t choose the way in which something will happen, or even if we don’t bother at all. When there is no option but to go out, I have had to come up with strategies to help us get where we need to be. These vary hugely depending on the day but the more he understands how long he will be away, that he is going somewhere safe where people will listen to and understand him, the more inclined he is to venture out.

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Sallycat PDA

 

Calmness, space and time for the recovery to happen are essential and during that time I see that Edward either retreats inside himself or lashes out. I have, as yet, been unable to predict what the reaction will look like but together we are finding our way through these challenges.

Being Edward

P.S. https://pdaparenting.com/2018/10/10/how-to-help-a-child-in-meltdown/

To us, during birthday season

To us, on our birthdays,

During the next few weeks, all three of us have our birthday. Today I’ve briefly hidden myself away to wrap presents for Edward’s Dad.

Edward is not a fan of birthdays, other people’s or his own. He says he isn’t keen on knowing he is getting presents but having to wait. He is unable to plan his response and isn’t sure how to react to things he isn’t expecting. When asked, regardless of current interests, he always asks for cars. I think he knows that it is a safe thing to ask for, unambiguous and he finds calm in the monotony of crashing them into things. Due to the waiting raising his anxiety, we tend to spread out any presents he receives. This also reduces the inevitable overwhelm.

To try and help at Christmas, he had envelopes attached to each gift, containing a photo of the present. He knew he had the option to have a look if he wanted to know what was inside. More often than not he didn’t take the option but it was clear to me that he felt much happier that he knew it was there. He also knows that if he asks, we will tell him what the gift is. My plan for the upcoming birthdays is to do similar for the recipient so Edward can have a reminder of what the gift is if needed. We always ensure that a present each of us receives is for him as well, be it a book to read together or something to do together. Kraul has been a frequent go-to.

Regarding other people’s birthdays, up until now we haven’t really made any attempt at celebration, occasionally aiming for a day trip somewhere without focusing on the occasion behind it. The place we go will be Edward’s choice. Reverse psychology is, at the moment, effective. ‘You aren’t going to make Dad walk around a cold park are you?’ He finds it hilarious, and is totally aware that it is what it is, but also feels that it is then up to him how we spend the day.

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Edward’s 4th Birthday

This year, Edward took it upon himself to make his Dad a card and present it to him a week early. He also is keen to make him a chocolate birthday cake. He has chosen chocolate because carrot cake is Dad’s favourite. These things delight me, knowing that he is starting to be able to participate as he wishes. The sentiment then becomes much more meaningful, as he doesn’t do it just through obligation.

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How we spent my 30th Birthday

I often discuss choosing something special as a present for the person. We try and focus on the fact that each person likes different things, and he would probably much rather receive his toys than my ‘boring’ sewing things, for example. This seems to provide a little way in for the gifting of things to others.

Christmas was the first occasion where he chose a very specific thing for a relative, targeted to them, rather than something that Edward would like for himself. I can definitely see him beginning to become keen to engage with the celebrations. Treasure hunts are popular here, and here we are a week before the event, he seems very keen to set one up for his Dad to find his presents.

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Not a birthday but our unconventional Christmas a few years back

It takes some thought, and slightly unusual strategies but with a little bit of abstract thinking, alongside lowered expectations, I’m hopeful that he will want to share in the day. And, if not, that he will feel confident in making that choice too. It is just another day.

P.S. https://thelearningcurvepda.wordpress.com/2018/06/10/pda-and-parent-birthdays/

To the parent finding a fitting environment for their child

Until Edward was around 18 months old, we tried to keep busy, joining in with a variety of things. During this time we found the most welcoming groups, mostly involving being outdoors and in the woods. We met some amazing people and the leaders of these groups were brilliant and inspiring and inclusive and kind. These were beautiful places and I have truly special memories. For Edward though, then, he would become very clear that he was not keen to go, or, if we did that he was not going to participate in the activities.

At this point, I would like to clarify that his discomfort in the situation was in no way down to anything other than his own anxiety. The groups we attended could not have been more ideal and the patience and calmness of these groups and their leaders and members will stay with me, and have had an enormous impact on my life generally and my parenting specifically.

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Edward splashing in puddles – his version of the craft activity!

Eventually we stopped going, as we were either as far away from the group as he could get, or I spent most of my time diverting, what I now see was, a very anxious child. I regret hugely the amount of times I have taken him places against his will. Trying to fit a square peg into a round hole may be a cliche but seems fitting here. Only now, his trust in me is being rebuilt and he knows that he has almost total say about the places he goes. Fortunately, this works for all of us.

Edward’s peers started school in the September just gone, and, while it was always our intention to home educate and just continue as we were, I did feel (possibly selfishly, and maybe due to external expectations) I wanted to try and put in a bit of structure. Since this time, we’ve dipped in and out of some home education groups with older children. Still, Edward was very clear that the structure and busy environment wasn’t something he was keen on.

On his terms, Edward will chat to adults for hours and hours. I therefore felt that if I could find a very small group, with people who could facilitate his interests and his changeable attention span we may be on to something. Fortunately, in the last few months I have managed to find two such places. 1:1 situations, with patient, attentive adults who really listen to what Edward needs. He leaves elated and I feel a mixture of relief and happiness. As he gets older, it is so lovely for me to see him in a safe environment with people he feels comfortable with, places where he is listened to and where he can learn new things. These places, at the moment are perfect for him.

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I am finding that as we find our own way despite being a departure from what I was expecting and what I felt like convention dictated, we are finding a path of contentment, joy and a lot of adventure.

This comes with thanks to everyone, the friends, their children, family and group leaders who have been so integral to our social activities in the previous almost 5 years and for the patience that we have been shown.

 

BeingEdward

P.S. https://www.stephstwogirls.co.uk/p/what-is-pda-pathological-demand.html

 

 

 

Dear Granny: Finding our Space

Thanks to the amazing response to Edward’s Granny’s recent blog post, I have finally had the nudge I needed to get something written.

Before I begin, I will share  the most useful, concise piece I have found (and shared with friends and family repeatedly!)

I was going to begin with a letter I wrote to Edward but I’ll save that for another time. Instead, here’s one to his Granny. I’ll try and include a P.S. to each post, linking to another blog, or article we found interesting and helpful.

Dear Granny,
Edward repeatedly asks you to read him the books you have written. Maybe one day, you can share what you wrote in your blog about him. As long as you tell him indirectly, he’d love to know that people see his strengths and how loved he is. He’ll probably tell you that when he writes a book, or a blog post it’ll be better than yours (who knows, maybe it will be!) but one thing is for sure, you’ll have yourself another choice of proof reader when he is older. His accuracy and memory will certainly come in handy. Just don’t give him a deadline.

Think of yourself as an encyclopedia, he will dip in and out to learn something new. The fact you know all these things without having to use Google makes you almost as impressive as Maddie Moate (from Do You Know). That is some accolade. Sometimes he will share his knowledge with you, for example, to tell you how people in the olden days dispose of their urine (olden being the opposite of ‘newen’ of course).

He wonders why you aren’t totally blown away with excitement that he has caught another new Pokemon/built a robot. He will become frustrated when he has to tell you, yet again, what happens next in a particular episode of Soapbox. Yes Granny, you know that episode we watched in 2016? ‘You forget a lot of stuff’, he’ll say. But he will tell you the information over and over again to make sure you fully understand what is important to him, so you can share in his joy.

He will delight as he finds fossils, builds stone structures and tries to demolish all the sand castles – when he is not approximately 300 miles away down the other end of the beach that is, wondering how we haven’t caught up, of course. ‘Hurry up Granny, we haven’t got all day’, he’ll tell you.

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He may not play much, unless it involves smashing things up, but there is always symmetry in that, he always has a plan, you just have to somehow figure out what it is and make sure it is adhered to rigidly. Once you can do that, he knows you’re on board, he will allow you to join in more and more. That is where you’ll find some pretty special experiences.

22706447444Your patience and ability to read the same book over and over (I’m looking at you, ‘Giant John’) allow him to, finally, have some down time. His busy brain doesn’t allow that often but the monotony (no offence!) of the same voice and the same words, allow him to maybe not switch off, but certainly be on less high alert.

The fact that you have a friend who will actually construct an elaborate book launching machine will live long in his memory. I’m just thankful he hasn’t, yet, requested we build a bigger, better model.

14 august 2018 (3)He will also defy all expectations by riding a horse. Something I was almost certain he would be too anxious to do. The fact he felt no pressure meant he was in total control.

He will show you that he cares not by saying it, but by allowing you to contribute to his Lego construction ‘no not that way Granny, that’s not symmetrical’, or by letting you hold one of his prized pokemon toys. Just make sure you remember how to pronounce its name. And if it evolves. And if it is Alolan. (No, I don’t really know what that means either).

Thank you Granny for allowing Edward to feel accepted, to feel special and to climb all over your new sofa despite the fact that one day, it’ll very probably end up covered with peanut butter. (Crunchy peanut butter spread all the way to the edges of a circular rice cake. Obviously).

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Granny (wearing her Springwatch Wild Academy Badge) and Edward

P.S. A – Z of Demands by Notes on PDA