Our PDA Story {Week 27}

Week 27 in the series 'Our PDA Story' comes from a parent of a boy with Pathological Demand Avoidance who happens to be the same age as our daughter. His mum also writes a blog; it has lots of helpful posts and advice in, so I hope you'll pop over there to show some support after reading this.

I'm still very passionate about bringing all these examples of living with PDA to you, as I feel it's important to help others understand more about what is involved. I also know that they help families feel not so alone at times when they are struggling. There are both positive and not-so-happy experiences in the series overall, which is a fair reflection of life in general, I believe.

Even though I'm not particularly confident about speaking to a camera, I decided to start reading these posts out over on my Facebook page in Live videos - a bit like a storytelling session as one reader put it! The reason for this was to try and reach a wider audience through my Facebook page - again, the more people who see and listen, the more who hopefully understand. So if you're ever around at 830pm on Wednesdays, please do come and join me on my Facebook page - I'm open to any questions during those sessions too, whether that's about PDA in general or something specific about our own experiences.

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What have we learnt in a year? Our PDA story.

I now recognise that ‘everything can change if you first choose to’. In our world, a year really has changed everything.

https://mummagrizzlybear.files.wordpress.com/2018/01/56e02bf60b3d62fa2089770d320a9b66.jpg?w=170

I’m going to start this blog painting you a picture. It’s a dark, cold January night and a friend suggests we take the kids and dogs on an evening stroll around the village (part of our ‘we’re gonna be fit for the summer regime’). This is not part of any normal routine for my children, who are quite used to ‘gaming’, watching TV and reading before bed most nights.

One is now 10 (known here as Biggerbruv) and an xbox addict, he is in year 6 and couldn’t think of much that would be ‘uncooler’ than being seen out with his mum. The other is now 8 (Our ‘babybear’ also referred to as my PDA’er). He likes his evenings to go ‘just-so’. He has PDA (Pathological Demand Avoidance) alongside some exciting ‘keep mum on her toes’ personality characteristics!

Mum, being boss, can make decisions about what the family are going to be doing tonight, so with minimal coaxing and planning, everybody is wrapped up warm and the dogs are on the leads. There were minor objections from the PDA’er but humour and distractions helped. On arriving back, those cherubs who often bicker and fight sat together to read to each other on the sofa before snuggling in for some TV and then briskly heading off to do their teeth and jumping into bed. They slept through and in the morning got themselves dressed and organised before departing for school all without one single fall-out or ill word. This my friends is what we call a one-off and not a typical picture of a night in the life with PDA. But a pleasant one none the less!

12 months ago, we received a formal diagnosis for our son from the Local Authority Autism Spectrum Disorder Team. We’d known about PDA for approximately 4 years prior to this so although the diagnosis was more confirmation than a shock, it still hit us like a bus. I attribute some of the ‘grief’ I experienced to the traumatic previous 4 years of encountering unsupportive and critical finger pointing professionals who wore down any essence of confidence or self-esteem that I had as a parent.

PDA to our household a year ago looked nothing like the picture above and I've just ‘avoided’ writing about this by distracting myself with Facebook, because to be quite frank, this is painful to reflect upon.

Last year, my 7 year old son was critically vulnerable. He’d been excluded from his mainstream school for ‘periods of prolonged challenging behaviour’ and had endured an awfully (mis)organised ‘managed move’ to an alternative smaller mainstream for a whole 3 hours before absconding and being returned by the police.

He was scared, scared of everything and anything, anxious beyond description. He did not have a healthy sleep pattern, he self harmed, he had obsessive and limiting food obsessions, he regularly lashed out, he was reclusive, he was destructive, he had frequent night terrors when he did sleep, he was defiant and avoidant by day and distressed by night and saddest of all he’d lost the light behind his eyes; that glimmer of ‘shiny sparkle’ I’d once known as a toddler, had gone.

As parents we were at our wits end. We’d survived years of ‘challenging behaviour’ prior to this but we would have gone back to those days in a heart beat. At our worst (and probably my most painful memory) we were a desperate family quite literally clinging on to a little boys life as he attempted to throw himself out of an upstairs window and then when successfully rescued ran to the kitchen and pulled a knife on himself with tears streaming down his face telling me and his brother how he ‘just wanted to die’. I can’t recall the source of this meltdown.

Back then I hadn’t really learnt to see past the challenging behaviours and this was a period of our lives that whizzed by in a blur and were tinged with heartache. It changed ALL of us. It quite nearly broke us in many ways.

I became Mummagrizzlybear. A parent-carer new to the world of parenting a child with a ‘label’. Prior to this I’d been the one labelled, from neurotic mother through to the anxious mother. The birth of mummagrizzlybear gave me a new platform to ensure I took care of myself and a way of documenting our journey. I found writing to be therapeutic and in many ways found myself able to intertwine my work head and reach out and help others along the way. I made a conscious decision to attempt to maintain my children’s privacy and dignity by keeping my blog anonymous. This has had some pitfalls in terms of being able to spread awareness and also in being able to connect with other families who may will prefer a ‘real’ face and name to interact with but on the most part I feel I have made the right choice for my family right now.

The tables started to turn in our household with 2 key events occurring virtually simultaneously. Firstly, Babybear post diagnosis was seen by CAMHS as a matter of urgency and the Psychiatrist prescribed medication to alleviate some of the symptoms. Secondly, we entered the world of ‘alternative’ education provisions. As parents we had to shift our ‘expectations’ and throw out the typical ‘rule book’ spouting out parenting strategies. We needed to prioritise ‘well being’, ‘happiness’ and ‘mental health’ for all of us in the grizzlybear household over and above the practical things like education, finances and employment. We learnt to measure ourselves differently and became more open to viewing the world through the eyes of our PDA’er.

A successful positive day became a ‘calm’, low on demands kind of day. One where we could be tucked into bed unscathed at the end of it. One where nobody had been excluded during that day. One where no one had been injured or property destroyed. For many months our focus was completely on getting our babybear re-settled and in fairness this became a far easier task once we stopped trying to squeeze our square-shaped peg into the round holes of a mainstream education.

The transformation from chaotic, misunderstood and destructive family life to a calmer, respectful and compassionate world was by no means overnight and had us riddled with guilt and heart ache as we felt we neglected Biggerbruv whilst tending to mountains of meetings and appointments all with the limelight on the youngest.

During these months of adjustment, we, like many parents in our boat, attended courses on ASD, and a particular favourite of mine a Sleep workshop bringing about one of the more significant changes in our house in helping Babybear to sleep alone, in his own bed, through the night! We also had many moments of feeling like we couldn’t go on or wanting to quite literally run away. It was not easy.

Mummagrizzlybear read heaps. Anything that could offer glimmers of hope and ideas we had not yet exhausted. My favourites being ‘The Explosive Child’ by Dr Greene for introducing me to the idea of ‘lagging skills’ and ‘Can I tell you about pathological Demand Avoidance Syndrome?’ by Ruth Fidler which was a great book to share with my sons (as it's written from the perspective of a child with PDA) so that they came to recognise that other people have PDA too.

We also had varying professionals come in and out of our lives ranging from a Family worker, a Behaviour specialist, an Educational Psychologist, a Psychiatrist, a mental health worker, A SCIP worker (supporting families with complex disabilities), Disability team social worker, an Autism specialist and the alternative provisions’ SENCo and teachers to name but a few. On each new meeting we had to share our ‘story’ from the beginning with each new member of the team.

Whilst the support was invaluable in many ways it was infuriating in others and we also faced soul destroying responses from those we assumed ‘would help’ but instead said things like, “You’ve done everything we’d suggest, there’s nothing more we can offer” or “I’m sorry but you do not meet the threshold for that support” etc. We’ve overcome obstacles and hurdles and we have fought for what we know is right for our PDA’er. We are so close to getting our son a place at our dream school for him. We are so so close. I can’t quite describe my excitement for him! We have defeated so many demons that we are a family embarking on new adventures in the months to follow, and a year ago we simply COULD NOT have done this and nobody could have convinced me otherwise.

Reflecting back over the things we have gained in a year has me feeling quite proud of our little grizzlybear family. Much of the things we have learnt have benefited both our PDA’er and his Biggerbruv (our virtually neurotypical pre-teen!) We have become calmer, less anxious parents who are more self assured and aware of our resilience.

You can follow our world and #virtualvillage of a support network here on facebook or just keep an eye on my blog updates here on my blog Mummagrizzlybear.

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Thanks for taking the time to read. Comments are much appreciated and sharing on social media could really help get the post 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 post which I hope explains it: the difference between PDA and ODD.

A variety of experiences of living with PDA can be read under this heading: 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 much more information about Pathological Demand Avoidance, and a great variety of resources can also be found on the PDA Resource website.

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

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?