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Wednesday, 21 January 2015

This is our PDA Story (week 1)

As suggested in my 5 year Blogiversary post, where I mentioned Challenging Behaviour, I'd like to share with you on a regular basis the words of other parents or adults living with PDA (Pathological Demand Avoidance). 



This week is the first time I am handing my blog over to another parent who has been, or who is going through, similar challenges to us. In trying to spread awareness, which I hope will lead to acceptance, I think it's important for readers to know that it's not just us experiencing these challenges. I also hope that some others out there who are experiencing difficulties with children might also experience their 'lightbulb' moment and come to understand what is needed to lower stress levels.

So these are the words of another Mum, telling her story of PDA. I know she would really appreciate it if you were able to take the time to leave her a comment on this post, even if just to say 'I've read this', or 'thanks for sharing'.


My friend gave me a diary as a present I guess about a year ago.  To my shame I've still not written on its lovely pale blue, gilt edged pages. I've always loved keeping a diary; ever since I was a young girl.  Yet this beauty sits blank, waiting.

The reason I neglected the opportunity to record events in the diary? It wasn't simply down to the life of a busy working mum, trying to keep a career that I'd worked hard for (and loved).  Attempting, often in vain, to make all the different elements of family life fit into some sort of workable routine. It wasn't the days when I was meeting myself coming back, dashing from one child's activity to another. The lapse in diary writing wasn't down to choosing instead those odd few nights when my hubby and I could sit down and say 'hi' after days as ships in the night.  The truth is that if I really wanted to record the events of my days I would. And in all honesty I didn't.  The diary had a little quirk to it; a five year diary where the shimmering shiny pages invite the owner to write a couple of lines a day over five years. I guess the fun lay in reading back over those days in years to come, comparing the 23rd of September say for five years. But why would I want to record the daily horror of mine and my family's existence?

I choose 'existence' instead of 'life' deliberately. We live day to day in survival mode. Each day I wake with a knot in my stomach as I hold my breath and anticipate the mood of my 11 year old son.  Perhaps 'mood' isn't the right word as it suggests a stubborn, pre-teenesque choice of behaviours but 'mood' is the easiest way to convey the overriding pattern that dictates the start of our days, indeed every minute of our days.

My son is Autistic and displays many of the features of PDA. I doubt that will ever be written into his diagnosis as, despite the fact that my family (and hundreds of others) live with PDA daily, it apparently doesn't exist. That is if you consult the diagnostic criteria.  Every day I find myself marvelling at how a condition that my son lives with and attempts to conquer, can be deemed not to exist.

Living every day with PDA for my son means attempting to, in his words 'be normal'.  In fact he expends so much energy everyday trying to 'be normal' that often when he arrives home he will simply explode. At home we have spent the last two years, since PDA was first suggested to us, on the steepest learning curve ever.  We have learnt to see his meltdowns as panic attacks, often the result of total sensory overload. So now we soothe and calm and treat his panic attacks as just that. We look to calm him and help him find the best ways to either prevent a panic attack or if that's not possible, and sometimes with the best forward planning in the world, it isn't and a panic attack is inevitable, we aim to keep everyone safe and allow the panic attack to pass.

Before PDA was mentioned to us we'd been on every parenting course offered and a fair few we'd paid for ourselves, too!  (Crikey if I could spend that money again, it wouldn't be on a traditional parenting course!) We'd return home after each session intent that this or that new technique would work, would make family life calm again and would help our beloved little boy to be happy. That was probably the hardest part of the last few years, seeing the intense sadness that T experienced. We would sit confused, deflated and depressed as, despite our best efforts to apply our new parenting skills, we'd find ourselves dealing with, what we presumed was, bad behaviour.  But something niggled and ate away at me during those parenting sessions, why didn't our younger daughter show similar behaviours if our parenting was out of kilter? Why didn't T respond to any of these strategies? Why was he like a mini Jekyll and Hyde? But with no solid answer we ploughed on. I'd danced around the idea of autism since T was 18 months but as he was excelling at school and the worrisome behaviours were only witnessed at home then every attempt for help was met with, you've guessed it: a parenting course.

Ironically the most difficult time for T and us has been all of our salvation. At the beginning of year 5 the same behaviours we'd witnessed and tried to deal with at home for years flooded into school. T went, in a matter of weeks, from being a boy with lots of friends, top of the class, sports captain to 'the naughtiest boy in the school'. He struggled to deal with the everyday demands of the classroom, found himself in scuffle after scuffle, swiftly moved to the edge of his friendship groups and crumpled as his once-friends continued with their friendships whilst he became more and more isolated. He simply couldn't cope. Those mechanisms which he'd employed for years at school simply didn't work anymore. Why it happened when it did I doubt we'll ever know but it was horrendous for T. Suddenly he was looking at exclusions, internal seclusion, loss of play times, removal from sports teams. His world was collapsing but finally someone else saw and listened to us.  Although the school were, by their own admission, shocked and at a loss, they had the sense to contact the right services and organisations to begin a process of referral and diagnosis.  Ultimately they wanted to keep him at school, with them and, most importantly, to help. Looking back now it seems as though events were destined to grow worse before they could begin to improve. His panic attacks become so much worse at home. He appeared locked in a vicious circle of sadness, fear, violent outburst, shame, guilt and sadness. So much so that every day was horrendous. We struggled to get him out of the house to go to school, he quit every sporting team which he was involved in, any activity which meant leaving the house usually meant carrying T to the car kicking and screaming. He simply wanted to hide away and forget that the world existed.

It was CAMHs who first suggested PDA to us. As many parents in our position will say, we'd never heard of it. So, we turned to the same place everyone else does when they're in the dark: Google. As we learned more we felt our own sense of being overwhelmed - the descriptions of other children fitted T so clearly, that soon the overwhelming panic gave way to relief. The label isn't important but with it comes an understanding and from that understanding strategies to cope. To move from survival mode to living.

And so we've come to see his meltdowns as panic attacks. I felt so stupid not to have viewed his distress as that previously. Knowing what I know now how could I ever have thought that he would choose this? If he could, for one second change the way his brain works and how it compels him to resist the demands of every day life, I know he would.  And when he does try hard to buck against those compulsions he feels so strongly then ultimately he pays the price and sensory overload kicks in.

We are all just at the beginning of a journey really and we aren't sure where we'll all end up but at least we have a little company along the way. Finding groups of parents who experience similar with their children has undoubtedly played a huge part in the tiny steps we are taking. Someone used the phrase 'hidden disability' at a Core group meeting recently and that couldn't describe our boy more clearly. If you were lucky enough to meet T you'd be greeted with a pleasant, polite, kind, caring, thoughtful, witty intelligent young man. And incredibly handsome to boot! Given all that you'd be forgiven for thinking hubby and I were way off the mark; totally wrong.  But once T knows a person, feels safe and secure and builds up trust he can then 'be himself' and stop trying to 'be normal'. Ironically it's at that point that people stare incredulously and peers flee.

And what about that diary? Well we've had more good days than bad of late, but the scars are deep and every wobble opens them up leaving me sick to my stomach, terrified of what might happen next. I can't open that diary just yet. I know I will, just not right now.




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