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Wednesday, 17 January 2018

Our PDA Story {Week 22}

Three years ago, I introduced a new weekly series to my blog which was called This is Our PDA Story. For this, I handed my blog space over to other families living with the type of autism known as Pathological Demand Avoidance. The aim was to share those experiences and help build a picture of what living with this autistic spectrum condition could be like.

The series took a couple of breaks along the way, but altogether twenty-one different accounts of life with Pathological Demand Avoidance (PDA) were read by many people. Readers were mostly in this country (UK) but some were further afield - of course PDA is not limited to the UK. I received many grateful comments and messages from parents who were relieved to see that they were not the only ones who were experiencing challenges in this way, and from some who recognised characteristics in themselves. 

My renewed focus for my blog this year is to continue to spread the word about PDA as much as I can. I'm absolutely certain that there are many who have not yet heard of this particular type of autism, but whose lives would be improved significantly if they could understand and use the most helpful strategies.

So here we go again with this weekly series, with a couple of small changes (new image, shorter name!). For 'Our PDA Story, Week 22', this parent below bravely shares their story. There's an explanation of the route to diagnosis, along with solutions which have worked well for this family. If you can offer any comments of support below, they are always much appreciated.


Our 6 year old son was displaying extremely aggressive behaviour and violence at home. There have never been any problems in school. He was targeting me, his mum, and his older brother who was going to high school. He had been “difficult” since around the age of 2 ½ but by the age of 6 we couldn’t excuse it anymore and the level of violence was breaking the family apart. 

Our GP was extremely supportive and referred us to CAHMS. They refused to see us on the grounds that the problems were all behavioural. I contacted Team around the Family and behaviour support. I did the Incredible Years course and spoke to school about the issues we were experiencing at home. 

We were all struggling. I tried to research his “symptoms” but couldn’t find anything to fit. The closest thing I could find was ODD but he was good in school. Coming to the end of my tether I made an appointment for a private assessment for autism. I genuinely didn’t think he was on the spectrum because he has good language skills and good eye contact. He has friends and isn’t afraid of loud noises. That was the extent of my knowledge about autism at the time. 

I left the assessment with a diagnosis of ASD with a presentation of PDA. CAHMS agreed to see us as a result of this. We were kept waiting 40 minutes to be seen only to be told that I should give my son more opportunities to run around outside, he doesn’t have anxiety; he has autism and that the despair I see in his eyes is a reflection of my own despair. Oh, and I was also asked to explain what I meant by him masking at school. 

I have read so much since diagnosis. I think I know more about ASD than the person we saw at CAHMS. PDA, however, is a bit of a curve ball in that the strategies that have proven useful for people on the spectrum don’t work with those who are demand avoidant. It is trial and error for us still, but the guidance from the PDA Society has been invaluable. School have put in place an IEP and are aware of the strategies suggested by the PDA society as well. 

My son is a smell seeker. He loves smells. I have used this to our advantage and introduced essential oils into our daily routine. They have helped him and us enormously. He settles to sleep better, he is more relaxed, he is more compliant and far less violent. 

I had to give up work because it was impossible to get out of the house in the mornings. This has helped him because things are more relaxed. I allow time on his tablet that I was restricting before. I reduce demands when he is anxious. I don’t always ask him direct questions, I have to be careful how I phrase things. I try to make things “fun” although this is difficult. My son doesn’t like praise, so I always give indirect praise. There are other things but each child is an individual so not all tactics are going to be useful for all children. If you have met a person with autism, you have met one person with autism, so it really is finding out what works well for the individual child. I have tried calming music, for example, but he doesn’t respond well to that. 

I have managed to reduce his anxiety, which I am so pleased about. Using the essential oils has empowered me to actually help my baby. Reading and implementing suggested strategies has empowered me. Not giving up when things I have tried haven’t worked has empowered me. In the beginning I was frantically looking for someone to help him, but it became very clear that that was going to be down to me and me alone. I had to dig deep to find the inner resources and strength to do this. We have gone from daily, violent meltdowns lasting up to 2 hours a time, to one or two much shorter meltdowns a week. 

The most difficult challenge for us is school. In the days before the start of a new term, his anxiety increases massively. The fight or flight response really kicks in. We ride the wave and wait for the routine to get back to normal. I sadly foresee a day in the future when he no longer attends school, but for now, we stick with it. 

I very much work on the principle of taking each day as it comes…sometimes each minute as it comes. I am not so afraid for his future now. I understand him now. We are re-building trust in each other and spending quality time together.


Thanks for taking the time to read. What would help immensely would be if you can share this post further; in groups, on Facebook or Twitter, any way you choose. Just one more person reading who may not have otherwise seen it could make a big difference.

Please do leave any comments of support below; for more reading about what Pathological Demand Avoidance is, please check out my blog post 'Challenging Behaviour and PDA'.

PDA can often be mistaken for ODD (Oppositional Defiance Disorder); my most popular post explains the difference between PDA and ODD.

To look back on previous stories of PDA showcased on my blog, please choose any of the posts highlighted in this list: This is our PDA story. This includes experiences from girls, boys, young and old, and includes some from adults diagnosed with PDA.

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

There is much more information over on the PDA Society webpage, and a great variety of resources can be found on the PDA Resource website. 

The PDA Society are holding a PDA conference in Birmingham on 18th April 2018 and the keynote speakers are professionals who have dedicated their lives to understanding more about PDA.

Pathological Demand Avoidance Society website

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Tuesday, 16 January 2018

Eurocamp Le Brasilia review

Don't know about you, but I'd already thought about booking up a summer holiday a couple of weeks before being reminded of Blue Monday this year. I'm guessing a few others are planning ahead too, so I thought now would be a great time to share our trip to Eurocamp's Le Brasilia site in the South of France.

We were thrilled to be invited along to review the accommodation and facilities on site during May half term last year. We were in fact supposed to have visited Eurocamp the previous year, but that's when Sasha ended up in hospital so we ended up having to postpone our trip. As you'd imagine, we were all hoping for something calm and relaxing by the time we did eventually get away on holiday.

We flew to Perpignan airport which was very handy, only a 20 minute drive from the site. Le Brasilia is situated directly on this long stretch of sandy beach and has everything you would need for a week away, so no need to even hire a car unless you like to get out exploring.

Checking in was easy and quick; we were met by a friendly Eurocamp rep who showed us to our accommodation. This was a three bedroom Espace unit, with air conditioning inside and a large raised deck with table, chairs, sunloungers and a barbecue outside. The open plan living area felt quite spacious and had all we needed; kitchen with oven, hob, kettle, microwave and fridge, plus dining table and chairs, sofa and armchair with storage area.
Eurocamp 3 bed espace unit living space

The bedrooms were a little more compact but still with plenty of storage space, and hangers too (a big bugbear of mine is getting to your holiday accommodation and not having any way of hanging clothes). The bathroom had a sink and a shower, and there was a separate toilet.
eurocamp 3 bed espace unit bedrooms and deck

There was plenty of space between accommodation units so we never felt like other families were 'on top of us'. Opposite was an individual tent pitching site, and again this was a decent size so it didn't feel cramped.

Top tip is that the beach towel packs are well worth ordering; you get two large towels in each.  The linen packs also had a towel in - definitely order those in advance too as they are more expensive if you ask for them when you arrive on site.

Le Brasilia is one of the larger Eurocamp sites, but overall it felt spacious, with plenty of facilities. The main shopping square has a decent size supermarket with plenty of choice at a reasonable price, and there's also a bakery, butchers, greengrocers, ice cream parlour and wine shop separately. A couple of gift shops and a newsagent sell everything from postcards and magazines to swim accessories, clothes and toys, and there's a hairdresser and launderette too. A large restaurant offers a good menu choice (although as Sasha is not a fan of eating out, we always ate at our accommodation) and there's also take-away pizzas.
le brasilia deep pool

The jewel in Le Brasilia's crown is most definitely the swimming pool area. It's open from 10am to 7pm and you will find a variety of watery options to try out. 
le brasilia pool slides

There's a rocky style area with a deep pool behind and water slides at the front, and next to that two baby and toddler pools with small slides and spray features. 
le brasilia water feature

We also loved the large rectangular mid-depth pool and the lane-swimming pool which were both pleasantly heated, and next to those is an adults-only large jacuzzi pool with loungers in the water. 
le brasilia lane pool

There's also a spa next door, although sadly we didn't find time to try that out during our visit. 
le brasilia outdoor jacuzzi

The other main attraction of this site is the stunning long sandy beach which all visitors have direct access to. Our girls spent any hours we weren't in the site pools building sandcastles and swimming in the sea. 
stephs two girls on sandy beach

The gate to the beach is locked at night times which helped make the site feel safe, although I have to say we didn't see any trouble at all.
Sasha as a mermaid in sand

There are plenty of other facilities on site too; tennis and volleyball courts, an indoor arcade style games room, playgrounds for toddlers, boules and archery areas and a football pitch. 
tennis courts at le brasilia

There are daytime organised activities including a mini club for children, but not so many that the areas ever felt too full or booked up. A great variety of evening entertainment is on offer for you to enjoy, from bingo and karaoke to music and magic shows.

playground at le brasilia

We only ventured off site a couple of times as we were having so much fun, but there are many activities to do in and around the local area, such as exploring caves, high wire climbing and of course plenty of watersports. There are also plenty of pretty seaside resorts up and down the coastline. The Eurocamp office on site holds a great selection of leaflets and can offer advice. 
Aqua Brava water park, Spain

We totally recommend the Aqua Brava water park which is just over the border in Spain. Lots of fun slides and pools - we were very lucky with it being so early in the season so it was practically empty!
collage of aqua brava water park Spain

Overall we can't speak highly enough of our experience at Le Brasilia and would definitely recommend staying there with Eurocamp for a fun, relaxing holiday. Bonne vacances!
stephs two girls on beach in evening

Disclosure: Eurocamp provided us with accommodation in exchange for an honest review; all words and opinions here are our own, as always.

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Monday, 15 January 2018

Monday Motivation: Rest If You Must

Last week's motto (Good things come to those who wait) still hasn't borne fruit for us sadly, so I'm trying again with a different burst of motivation for this week.

Probably my favourite poem ever and the only one I can remember all the words to: 'When things go wrong as they sometimes will, when the road you're trudging seems all uphill....'

I had taken a bit of a rest over the festive period, but I am in no way quitting. Our path is most definitely onwards and upwards and hopefully there will be action from all parties before too long.

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Sunday, 14 January 2018

Blog Birthday

My first ever blog post was written exactly eight years ago today.

Pretty self-explanatory, it was titled 'Today - a diagnosis of autism?'.

It was written on the very day I had taken our youngest daughter Sasha to see a paediatrician. She was just 2 and a half years old.
Sasha in summer dress in snow
Sasha, January 2010, around the time of her autism diagnosis. That summer dress features in one of the posts linked below!

There was obviously so much going through my mind that day. I guess it's fair to say there is still always a lot going on up there. There were no pictures on the blog in the early days- don't think I knew how to do that! I may have refined some of the ways in which I blog, but the main purpose is still the same - a diary for us, and an education for others.

For the first two or three years I had very little idea about the big blogging community that was out there, and consequently I don't know if anyone other than my mum was reading my early posts. Probably just as well... it took me a while to figure out how to reply to any comments, so apologies to anyone who did comment in the early days and who may have thought I was ignoring them. 😳 Now though, I'm part of a large community of bloggers, who all support and inspire me in different ways every day.

It's actually really interesting for me to go back and read my old posts now, to see just how far we've come. There were posts about sensory issues and 'unusual' behaviours. The first post about why I named this blog the way I did (with hindsight, it could have been something more helpful from a social media point of view!). 
Steph and Stephs two girls in 2010
Steph's Two Girls back in June 2010, year of diagnosis. Note the summer dress...

I have bittersweet memories of some behaviours (repetitive Dora book reading for example) and I can appreciate that in many ways life has got easier as Sasha has got older. 

There are of course different issues as Sasha matures though. Schooling is the main concern right now, but I'm aware that there are even more challenges approaching from the horizon. These may be less physically demanding in some ways, but I suspect they will be mentally more stressful for everyone. 

So after eight years of blogging, what has changed? I've attended a handful of blogging conferences and I'm now aware of what I should be doing... SEO keywords, broken link checking, how to write a fabulous title (that post 'what to do after a diagnosis of autism' or 'Top ten tips for after a diagnosis of autism' is still waiting in drafts...). It's finding the time to do it which is still a daily struggle.

My overall blog design has changed a little along the way but not hugely. I was amazed and delighted to be nominated and then voted into the shortlist for the UK Blog Awards 2018I guess what I'm most proud of is how my writing style has not changed all that much. I still write from the heart, about our experiences, in order to help both Sasha and other families.

'I owe you an apology. I confess I watched your update and then read your blog and felt a pang of resentment. I wanted so badly to feel the good will sensations and share in your relief and excitement but instead I dipped into 'its not fair' and 'why not us' and 'am I doing enough' despair, Fortunately, despair was followed closely by anger and in this case the anger I felt was motivating. So, pulling up my big girl pants I once again took on the seemingly never ending battle with our LA....AND.... this time they listened. So Thank you. Thank you. Thank you. For continuing to share your personal battles and journey, even when it is heart wrenchingly painful to read, it is thought provoking, motivating and reduces the isolation we as parents in these positions can experience. Fingers crossed for you in the next steps your end. Might actually find the time to update my bog today with our good news too! Inspired to keep going, thanks to you x' 

The above is one comment I received recently via my Blog Facebook page, but there have been several others like this over the years. Every comment means so much to me, and spurs me on to carry on sharing. Every reader who takes the time to learn a little bit more about Pathological Demand Avoidance can make a difference.

Next week I'm going to restart my series called 'This is our PDA story'. I ran this for a total of 21 weeks over the past couple of years; it's where I open up my blog and invite others who are also living with PDA in the family to share their experiences. I've read these stories already, and I can tell you that some are sad, some are pretty hard-hitting and some will only be fully understood by those who live through it. These experiences will be posted weekly in the run-up to the PDA Society conference being held in Birmingham on 18th April this year. I hope that my readers will offer comments of support for these writers who have experienced some very challenging times. Life with PDA is described as being like 'walking on eggshells'; it's not in any way like typical parenting and it is exhausting.

I've joked in the past that this blog has been like free therapy for me, but in actual fact that is pretty close to the mark. It has been amazing, it's been fun, it's been hard work, but most of all it has been us. Here's to the last eight years; I hope you'll stay with me for the next eight!
Stephs two girls in snow Dec 2017
December 2017

Spectrum Sunday

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