Wednesday, 28 February 2018

Our PDA Story {Week 28}

Time for week 28 in the series 'Our PDA Story'. This series has been running since 2015 and the original thought behind it was to showcase experiences of other families living with Pathological Demand Avoidance. The aim is to help others understand the challenges that are faced by those with PDA and their families, at the same time as hopefully helping families to not feel so alone.

There currently seems to be, and probably always will be, discussion over whether PDA is a good 'label' to give. For anyone who is not sure of the positives of having a specific diagnosis (a much better phrase than 'label'), I'd suggest a read through of all the previous weeks of this series as a starting point. I'm sure that all of these families do appreciate the understanding which comes with knowing more specifics about a diagnosis.

PDA is a type of autism, but the strategies which really work for this condition are different to those for classic autism, Aspergers or ODD.

This week's writer talks about a specific event of going to hospital with her daughter - something we had to experience ourselves a couple of years ago when we had a ten day stay in hospital with Sasha. The usual stresses of everyday life are of course magnified ten-fold in an environment such as this, and I could definitely relate to these words.


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The House of Demands.

There is a building, likely very near to where you live, that may be considered to be ‘The House of Demands’. It’s not usually a very friendly looking building. It is large and complex. It contains many different people, however they do all share a goal - to help and heal those who are unwell or injured. It probably has a sign out the front that says ‘Hospital’. 

Recently, my 9yr old daughter (who is diagnosed mild ASD and who I believe has PDA) and I had reason to spend some time in one of these buildings. It was the first time for her. Luckily, it was for a seemingly straightforward reason – to have routine dental work done. Due to my daughters’ anxiety and inability to cope with dental work being done in the chair at the dentist, we were having it done under a general anaesthetic at a hospital. 

In my mind, the moments I thought would be the hardest for my girl (let’s call her Josie) would be connected with anxiety during the lead up. I was not even sure I would get her in the car to go to the hospital. Accordingly, we did lots of preparation before the day arrived. The hospital was great and allowed us a tour and meeting with some of the nurses, who also gave Josie an anaesthetic mask to take home and get familiar with. At this point I should explain that Josie is not on any regular medications at all, has an unusually low threshold for pain or discomfort (or even just the anticipation of them), and until you experience her in full meltdown you would barely even notice she is anything but 100% neurotypical. 

The day arrived and aside from some mild anxiety about the fact that she wasn’t allowed to eat anything for breakfast (due to the upcoming anaesthetic) Josie was doing really well. We got out of the house and into the hospital with no problems at all. I was so proud of her. She had recently found a poster with the quote “She was unstoppable, not because she didn’t have fears or doubts, but because she continued despite them”. It has kind of become her mantra now and I am sure it helped her a lot that day. 

As is usual for a hospital stay, when she was admitted the nurses came along and asked her lots of questions – ‘How are you?’, ‘What is your date of birth?’, ‘What are you here for?’ etc. All quite simple, but what I now recognise as the start of the intensive demands they inadvertently placed on her. Never mind the fact that she ‘had to’ have her teeth done in the first place, and it ‘had to’ happen at the hospital, and she ‘had to’ do as we were all asking, both directly and indirectly. 

The first sign of her as yet hidden anxiety was when she had to put on the hospital gown. She hated it because it felt funny and she was worried people could see her underwear. After a minor meltdown with some swearing and hiding under the blankets (her, not me), and a discussion with a nurse, we decided a mild sedative would be helpful. The hospital gave me a liquid that I was able to convince her to drink. So, more demands: you need to drink this; you really do have to wear the gown etc. Josie and I came up with a plan where she would wear her T-shirt and a towel underneath the gown – this was OK with the hospital because neither of those contained any metal. Time to go to theatre and more questions from a multitude of nurses and doctors. I could sense it becoming a problem but the sedative helped and Josie went into theatre and managed the anaesthesia process with no problems. Phew. I was very shaky but a coffee and some quiet and I was OK. The worst was over, or so I thought. 

It struck me at this point how many questions the staff at the hospital asked both me and Josie, and how demanding the whole process is for so many reasons. There is an expectation of how to behave, what to do, how to answer all the questions. These are all people she doesn’t know so she would be unsure of what answers they want; what is the right one. Add to this a total lack of control over the situation, sensory factors and a good dose of fear. 

Back to the story….The next thing I knew a nurse came and got me to say Josie was out of theatre, it had all gone well and she had woken up in recovery. They also said she was a bit upset and confused and took me straight up to see her. Poor Josie was becoming very agitated. She had woken up in a strange place, with no familiar faces, lots of lights and machines, disoriented and likely feeling awful. A new nurse was talking to her trying to calm her down. I got in close and tried to calm her but unfortunately was unable to bring her back. Things escalated and she went into a full, violent meltdown. It culminated with the anaesthetist returning to sedate her. 

When she woke up again a short time later I of course was right there, but so were a lot of other people. After a minute or two they started with the questions – ‘How are you feeling?’, ‘Do you want an ice block?’ - and the direct demands – ‘Lie still’, ‘Don’t touch the bandage on your arm’ etc. This continued for some time. Josie was upset and wanted to go back to our room immediately. Looking back I see that she was trying to gain some control and trying to help herself – she knows to get away from any situation where she feels anxiety building. The nurse told her she could as soon as she was more awake and settled (another demand). I told them I thought they would have some trouble getting the canula out of her arm so they decided to do that before we went back to the room. As soon as they told her what was happening her anxiety skyrocketed and she again went into full meltdown. More sedatives. Before she woke up again they removed the canula and anything else attached to her, then as she was stirring they took her back to our room. They closed the door behind us and left her and I to ourselves for at least an hour. It was perfect – no questions, no demands, no lights, no other people. She woke up fully and was much happier. 

After a time she wanted something to eat. I said I would get a nurse but asked - was she ready for all the questions again? We made a joke and she asked me to pretend to be the nurse. We role played all the possible questions and demands. Then not one, but three, nurses came in to organise food. You can imagine how many questions they had! 

In hindsight I should have thought more about how she might wake up from the anaesthetic. Although I had discussed her ASD with the hospital (PDA is virtually unheard of here, particularly in the rural area we live in), none of us had considered this part of the process. In the future I would be insisting that she wakes up in recovery with just me there, no other people, and that the curtains around her bed are drawn. 

Although I realise that medical staff do need to ask patients certain questions to ascertain level of alertness and the like, I would love to see a scenario for patients such as Josie where the questions and demands are limited to those which are essential and/or presented in ways that hide the demanding aspect if at all possible. Hospitals really are ‘houses of demands’ and often for very good reason. I cannot praise the staff at our local hospital enough, they handled things very well considering the information they had. It was a huge learning experience for me, and future hospital visits will be taken with my eyes very much more open.

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Thanks for taking the time to read. Comments are much appreciated and sharing on social media could really help get these posts to people who have still not heard about PDA.

For more reading about what Pathological Demand Avoidance is, please see 'Challenging Behaviour and PDA', and for an idea of how to help please read Strategies For PDA.

PDA can often be mistaken for ODD (Oppositional Defiance Disorder) but there's a definite difference; more here: the difference between PDA and ODD.


A variety of experiences of living with PDA can be read using the link This is our PDA story

If you feel up to sharing your own experiences with my readers to help spread understanding (this can be anonymously), please email stephstwogirls@gmail.com.

The PDA Society webpage has a huge range of information about Pathological Demand Avoidance, and there are also links to info on the PDA Resource website. 

The PDA Society are holding a PDA conference in Birmingham on 18th April 2018 which I will be helping with - hope to see some of you there! 


Pathological Demand Avoidance Society website



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Tuesday, 27 February 2018

New School Update

Time for an update about school for Sasha; I'm sure you're all hanging off the edge of your seats...
Sasha on stage at new school

Just in case there are any new readers, I'm going to try to summarise a very long story in a nutshell, so anyone else bear do with me for a paragraph or two.

Our younger daughter Sasha was diagnosed with autism aged two. She followed her elder sister into a mainstream primary school, but it became increasingly difficult for her over the years and towards the end of Year 5 (last summer), we reached a point where she felt unable to attend any more.

So for the past eight months while we tried to sort out a new placement, Sasha has been at home with me. I can't exactly call this home educating as in all honesty there hasn't been a lot of direct teaching going on. For one thing, we never thought it would take this long to resolve the issue of finding her a place at a new school, and so there weren't any fixed plans for being at home.

Anyhoo, after several meetings and a couple of provision panel decisions, it was agreed by our Local Authority that Sasha needs more specialist provision to enable her to learn. She was 'granted' a place at our local MLD (moderate learning difficulty) school, because there is no specific autism provision in our county (I may have mentioned that once or twice before).

Just before half term, I had a first meeting with the school to discuss the way forward, and I took in plenty of information about Pathological Demand Avoidance. Last week Sasha was allowed to have another tour of the school after hours when it was quiet - she'd done this once before, last July, but it seemed like a distant memory to her.

It was lovely that our older daughter could join us for the tour; Sasha wanted to share her excitement with her. She has recently suggested a couple of times that if Tamsin liked it too, maybe she could switch schools... it's been a little difficult to explain to Sasha why that's not possible if I'm honest.

Sasha had so much fun looking around again; she enjoyed the sensory room even though it's still in development. What she had remembered most were the sensory snakes on the walls of the wide corridors, and they were still a big hit with her. 
collage of new school pics

There are plenty of animals at the school, including some fish in a small aquarium. Sasha had been asking for fish at home but I'm hoping seeing them every day at school now will be enough to keep her happy! I'm pretty sure she will appreciate the large school playground and fields; despite it being freezing outside she enjoyed going off for a quick dance and whirl around them:

The girls had fun together in the sensory garden at the front of the school on the way out - so much so that Sasha asked for them to have their photo taken, which is generally unheard of:





There's a little clip here of Sasha playing the pipes on the way out too:


We followed this after hours tour up with a lunchtime visit yesterday. This was one of the ways we suggested to try and ease Sasha back in to what will be a noisy environment compared to what she has been used to at home. Sasha was delighted to see that the school offer the exact same type of potatoes which her old school did - so her fears about not being able to eat anything there have thankfully been pushed away. The children were actually all relatively calm in the dining hall and one young boy even waved at her as we left, which made her feel happy. A teacher came down to welcome Sasha and to offer her the chance to visit again on Thursday, just for half an hour to see her classroom and meet her classmates.

Sasha is thrilled about the opportunity to get back into a school and to be with other children again. My worry (because of course there always has to be one, as a Mum) is that her expectations are pretty high. We just have to hope that she will love it as much as she currently thinks she will. There's the small matter of having to follow instructions again and understanding that she is a small piece of a bigger picture, but hopefully these are not insurmountable obstacles.

Her excitement and nerves are running equally high right now, and I'm doing my best to calm her, but it's no mean feat. Fingers will remain tightly crossed for a happy, long-term outcome.





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Monday, 26 February 2018

This Is Me

Yesterday I took our eldest girl to see The Greatest Showman. It was a singalong version, which was a little weird considering we hadn't seen it before, but the songs are so catchy that it didn't really matter. 

I'd asked Sasha if she wanted to come with us to the cinema with us, but she wasn't interested. She's never been a big movie fan anyway. We've been to the cinema with her for specific ones which have grabbed her attention before release - Inside Out and Trolls - and a couple of others which she's just about managed to sit through (My Little Pony, Home and Moshi Monsters). 

We loved the film, and all the fabulous music. One song stood out for me in particular though, and has been going round my head ever since. This Is Me.
Sasha on beach with words This Is Me

'I am who I'm meant to be; This Is Me'

The words played over and over last night, and of course I thought of Sasha and the relevance to her. How she is different, how she is brave, and how she is amazing, like all of Barnum's tribe.

I also thought of myself, and others I know. Having been a host for the Monday Motivation linky for some time, I recently decided it was time to retire from doing that regularly. 

I go through phases where I see people all around me doing better at life; am surrounded by many who seem to manage to achieve much more than I do on a daily basis. Whether it's campaigning on behalf of others for justice, such as Emma and Nikki, or changing hearts and minds by doing a Tedx talk like Hayley, talking about emotional and sensitive subjects like Steph (the other one!), sitting on toilets for an important cause like Sarah, gathering support for huge petitions like Laura, organising festivals for those with disabilities like Debs; the list is endless.

Sometimes it's easy to feel like I'm not using my abilities to their full potential. What more can I do? Why can't I achieve all the things others do?

But as I lay on the bed with Sasha last night, with her squeezing my hand tight as she tried to get off to sleep, as she does every night, I was happy to think 'This Is Me'.

This is what I was meant to be, a Mum. The girls are my world and everything I do, I do for them (I have been dying to get a Bryan Adams reference in here for ages...). I'm sure there's others in the groups I'm in who probably doubt themselves from time to time, who maybe feel they are 'never enough'. I want to give them all the biggest hug and remind them that they are enough.

Not everyone in life was made to be a driving force or to have a mission visible to many. That doesn't mean we should think any less of ourselves.

So today I'm going with a different kind of motivation instead, inspired by the Barnum tribe. Be who you are meant to me.





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Thursday, 22 February 2018

Shopping with sensory style

Today I did something with Sasha that I never thought I would do. We went into a changing room, and she tried on some clothes! This is relevant to my recent post about sensory issues.
Sasha doing model poses in her new Primark clothes
Whaddya reckon? Could she be the next Primark model?! 

More specifically, we went into the changing rooms at Primark, and she admired their cubicle curtains which are black on one side and teal the other. She then asked me to wait outside the cubicle so that she could come out with the clothes on and do a grand reveal. It's funny how children always seem to have the ability to surprise you, isn't it?! 
Excuse the rubbish pictures; these were snapped in haste in an empty dressing room!
Thanks to everyone who responded to my previous posts on Facebook about struggling to find plain short sleeved jersey dresses for Sasha in a bigger size. I had lots of replies, and following those I did more online searching. I'd already got two dresses from H&M after someone reminded me of their online shopping option, but sadly they have ended up slightly on the small side after washing and drying.

I looked at a wider range of other stores on top of the usual High Street mainstream options; Next and M&S had already been covered so I moved on to Joules, Fat Face, Seasalt, Boden, Lands End, Gap and Amazon. Nothing suitable sadly; I haven't had chance to check the big supermarkets yet, but I'm hopeful of finding one or two there in the run up to summer. 

Today though, by employing some clever tactics, I made it out with Sasha for a shopping trip which I knew she wouldn't enjoy. A few days ago I'd ordered nine pairs of school shoes online with fingers tightly crossed that at least one pair would be suitable - thankfully, one was. That meant I needed to return the other eight pairs which didn't fit her, and that involved going to four different shoe shops and the Post Office! 

Bear in mind that I'm lucky if I manage to make it into one or two shops if I'm ever out (very rarely) with Sasha, so this felt like a big mission. Once we'd sorted the shoes, I persuaded Sasha into Debenhams to look for a dress for her. I found just one, by Jasper Conran (not cheap, lucky me) which may do the trick as it's super soft... trouble is, it has long sleeves. So I bought it anyway, and will do my best to alter the sleeves by cutting them short and sewing - guess I have to start somewhere! 

Then, as we were about to leave town, I remembered that a couple of people had suggested looking in Primark, as they thought they had seen T-shirt dresses in the adult section. Sasha wasn't overly keen but I swept her in and amazingly, as we passed a few racks of summer clothes, Sasha stopped at a sleeveless top with BUTTONS ALL THE WAY DOWN THE FRONT. 

I totally resisted the urge to say 'seriously?!' and I searched the rack for the smallest size - Primark do a size 4 in adults, which is pretty small. I thought it might still be a little large (especially as the top had a slightly low V-neckline) so I suggested she tried it on in the changing rooms. I didn't for a second think she'd agree... but she did! 

I quickly whizzed around the store looking for anything else that might be suitable. There were a couple of T-shirt dresses but they had straight skirts, which I suspected she would find too restrictive (she did, but it was lovely to see her in something different if only for a minute!). I suggested some shorts for summer might be good, and she agreed to try those on too. 

Sasha was in high spirits, walking up and down the corridor in front of the mirror with her new clothes on as if she was on a catwalk, we laughed a lot, and it felt like quite a special mum-daughter occasion that I didn't think we'd ever have in this way. Sasha said the buttons felt 'a bit weird, but I'm sure I'll get used to them, as this is going to be my favourite ever top that I wear all summer!'
Two tops two shorts from Primark

So today we left town with two button-up tops and 2 pairs of shorts. They're not exactly colour co-ordinated, and yes I'm sure she will wear pink with the orange and whatever takes her fancy, but as long as she's comfy, who cares?! She's probably got more fashion style than her mum anyhow..

I think I'm still a teeny bit in shock 😄 Thanks go to Primark and everyone who suggested them!


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