Tuesday 15 November 2016

This is Our PDA Story (Week 18)

Welcome to week 18 of my series called 'Our PDA Story'. This is the place where families who are living with Pathological Demand Avoidance can share their stories - to explain how PDA affects them on a daily basis, or to show what kind of different lives we all lead. 

Every child is unique and so it's unlikely that any two children with PDA will be the same, but there are similarities in all the stories.
This week's blogger wished to remain anonymous but is still being brave in sharing their family's situation. It can be difficult to be totally open with your writing if you are worried about reprisals, but I think there are many parents of children with PDA who would write this if they could.


You don't see the child who desperately wants to be compliant and 'good' but struggles to keep it in all day then explodes at home in their comfort zone with those they trust the most.

You don't see the crippling anxiety that stays like a knot inside, as the world and other people can be unpredictable which leads leads to an overwhelming need to be in control of their world and those around them.

You don't see that that very same anxiety, when built up enough, leads to the inability to face going to school or participate in much loved activities until the 'knot' has melted away enough to move on with daily life.

You don't see that the child who is refusing to speak or engage with anyone, or maintain eye contact, who may seem 'rude', ignorant, or antisocial could actually be in shutdown and struggling to deal with their surroundings. They may be desperate to join in but unable to due to their sensory overload or anxiety.

You don't see the absolute need to know what is coming next in order to avoid the unexpected and the worry that comes with it.

You don't see the strict and complicated routines that accompany things as simple as getting in and out of the bath, going to bed, leaving the house and meeting dogs in the street. Every. Single. Time.

You don't see the exhausting, continuous warnings and countdowns given numerous times through the day in order to get through to the next part of the day without meltdown.

You don't see the child that finds it more comfortable to sleep on the floor or with no clothes on than in a comfy warm bed.

You don't see the child who wears the same things every day for comfort yet has a wardrobe full of lovely clothes to choose from, but who can't throw out of any of those clothes as they mean too much.

You don't see that the 'fussy eater' is actually a child who finds certain textures and smells very difficult to manage....or the years spent trying to increase the 'acceptable foods'. It's not as simple as forcing that child to eat what is in front of them

You don't see the child who worries about and thinks about death excessively but keeps it to themselves for fear of it coming true..

You don't see the obsessive resistance to simple everyday demands, like being asked to go to the toilet, eat food, start a new activity or get dressed, the inability to 'just do' what has been asked, without causing a fuss or delaying as much as possible due to anxiety.

You don't see the objects that absolutely have to be collected, carried, displayed and kept, in order to feel at ease and comforted by the familiar, and calmed by their order. You don't see the inability to throw anything away, no matter how insignificant it seems to you, even empty packets and what you may call 'rubbish'.

You don't see the all encompassing intensity of the interests and obsessions, and the need to share it with anyone willing to listen.

You don't see the confusion or distress as to why a person may have behaved or reacted in an unexpected way.

You don't see the rigidity of thought and inability to stray far from that expectation or pattern without invoking panic or anger as a result.

You don't see that the child having a 'tantrum' is actually overwhelmed, or upset because something doesn't make sense, has changed without warning, or is out of 'order'. Sometimes the demands have just become too much to process. That the parent trying to deal with it, doesn't need your stares, comments or judgement to make them feel any worse than they already do. This is a meltdown, not a tantrum, it isn't about getting their own way - though it can sometimes be about controlling their environment to alleviate the anxiety inside.

You don't see the build up of fear, anxiety and helplessness as a meltdown is triggered, building like a wave, unable to be stopped....you don't see it come crashing down catastrophically, unpredictably, sometimes lasting for hours. The need for space, calm, unending patience and understanding, but displaying itself in kicks, punches, scratches and lashing out verbally, anything to end the feelings of confusion before it finally ebbs away.

You don't see the self hate, recrimination and regret that comes after that meltdown, the desperate wish to take back the words and actions that were totally beyond any rational control.

You don't see the tears, the frustration, feeling 'different', 'weird', not 'normal' and inadequate, when actually they are kind, loving and unique and exceptionally clever in so many ways.

So what do you see?

You see a happy, confident and chatty child. You're seeing the need to be accepted and liked and to fit in, a child who is clever enough to have learnt the 'social norms'.

You see a child who enjoys drama and pretending - who is good at taking direction and acting the part. You're seeing a the child who finds it easier to deal with scripted interactions and conversations.

You see a 'normal' child who has their moments - like all children - but is generally well behaved. You're seeing a child who saves their worst times for the safety of home and those who understand them and won't judge.

You see a polite child who can converse well with adults. You're seeing a child who finds interactions with adults less unpredictable and confusing than with peers.

You see a tiny snapshot of time where they can hold themselves together long enough to pass as 'neurotypical' - like you may be.

You see what you want to see. You see the mask.

Please offer any comments of support below as the original writer will still be able to view them. Thanks.

For more information about PDA, please visit the PDA Society website at www.pdasociety.org.uk.

If you click on the links below they will take you back to previous weeks of 'This is Our PDA story' where you can get a flavour for what PDA life is like.

Week 17
Week 16
Week 15
Week 14
Week 13
Week 12
Week 11
Week 10
Week 9
Week 8
Week 7
Week 6
Week 5
Week 4
Week 3
Week 2
Week 1

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?

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

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