Thursday 14 March 2019

Climbing the PDA mountain

Sometimes, for families of children with Pathological Demand Avoidance, 'simply' getting out of the house is anything but simple. Looking back on when Sasha was much younger, in the first few years after diagnosis, I remember the feeling of being isolated. Wanting to join in and be sociable, but knowing that going out would cause my child extra pain and stress for a variety of reasons, and so having to accept that doing less was better all round.
Sasha on climbing wall
This photo might give an exciting snapshot of today; without any words to accompany it you'd be forgiven for thinking we were having fun.

Sadly, that's not the case. Sasha has been wanting to try out this new climbing centre for a couple of months after seeing it last time we were in the shopping centre on a quiet day. I considered booking for half term because she was so desperate to go, with her sister, but came to my senses as I realised just how busy it would be. So we put it off, until I realised that today would be a great time to try. Sasha has a tutorial day, which means she's off school apart from a quick meeting with her teacher this afternoon. As this is specific to her school, I knew that would mean the climbing centre was likely to be quiet and so I booked us in. £8.50 for an hour, not too expensive to give it a go, at least. However for a child like mine, who ends up with only about 10 minutes actually on the walls, it doesn't actually feel like great value (no fault of the centre though!).

Sasha was looking forward to it; she's been climbing before in a couple of different places and seemed to enjoy it. It's been a while though, and today was a reminder that a lot of things seem to be getting more difficult for our youngest girl. I could tell that once the harness was on, it felt uncomfortable to her - again, no fault of the harness particularly, just Sasha's sensory issues and increasing inability to cope with things feeling different on her.

She was the only child in there which was of course a huge blessing, as it meant no waiting around, no-one to feel silly in front of or to compete against her. The young assistant was lovely and friendly, and just the right amount of trying to be encouraging. He suggested trying the easiest 'wall' first for a practice - this was a rope ladder though, and the fact that it moved probably unnerved Sasha slightly. She only made it up two rungs before wanting to come back down; she did that twice before mentioning a fear of heights. Would the day have ended differently if I'd have guessed that might happen? Probably not, but as a parent to a PDA child I am always trying to second guess every potential problem, and always reflecting on them afterwards.

Sasha was then allowed to look around at the 15 or so different walls and say which she liked the look of, and she ended up trying five of them in total - but each time, only getting onto pretty much the lowest level. I was encouraged that she tried some of them more than once, and on the 'big cheese' wall she even managed to pull up one more foothold, but the overwhelming anxiety about the height of the walls, her concern over whether to walk back down if she went higher or jump off and let the rope take the strain and thoughts of what would happen if you got further up and couldn't come back down just took over. Added to that was the whole discomfort thing - she felt the harness was painful around her bottom (it definitely wasn't too tight) and that the metal clip kept digging into her chest as she climbed. The assistant tried to help the situation by wrapping a padded cover around the clip, which is usually used for younger children if the clip is nearer their eyes apparently, but even that didn't seem to help. Obviously she couldn't climb without the clip, but she couldn't bear the feeling it was giving her.

So those two things combined meant that we spent around twenty minutes in the centre in total, and half the time was Sasha walking round looking at the walls, wondering if she could do them, becoming more dejected as time went on. There was nothing I could say to make it better; there is no point in trying to 'jolly' her along. No words make her fears any less, we just have to let her come to her own conclusions about what she wants to do. So eventually, as her shoulders drooped and she just stood still, I reassured her that it didn't matter if we left and went home.

To me, it really didn't matter. Once an activity is booked and paid for, that part is done and there's no refunds, and also no point in carrying on if it's not fun. There's a part of me which is glad that Sasha's older sister wasn't there, as for Tamsin it has never been fun to have to leave places early, and yet she has done that graciously for most of her life because she understands her younger sister's needs and goes along with the strategies we use. However, to Sasha it mattered greatly; this was an activity which she really wanted to do, and faced with the fact that she couldn't, she told me that she felt like a failure. Because of the extreme way in which Sasha's emotions manifest, this will lead to her mood being down for at least the rest of the day, if not longer, and she won't forget. She most likely won't want to go back to the shopping centre any time soon either.

So then the question comes, is it worth trying? Is going out and trying new things a good idea, when it causes such stress and a huge knock to self-esteem? I can see how easy it would be to give up and not try anything new, to avoid this follow-on situation. For me though, it's always worth it when it's lead by Sasha. I wasn't suggesting she try climbing, it was something she wanted to do herself. I'd never put her off an activity, as long as I felt it was safe and we had the funds to do it. Sometimes in fact, I'd be happy to pay more to give her the opportunity to find something which she loved.

Not enough sleep and too much worry would have probably driven me to tears previously, after an outing like the one we've had today. Instead, years down this path we're walking, I can still feel a tad deflated, but it's not quite so overwhelming. For all those families who are still at the earlier stages of trying to make this work I say hang on in there, it will get easier and you will find your groove as a family, growing that thick skin as you do and learning to ignore what others think. It's not failure and defeat, it's small steps forward and new learning. Your family's happiness is what matters overall.

To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.

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?

Autism with demand avoidance or Pathological Demand Avoidance?

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  1. I think it’s great to try anything with them even if it ends up a disaster. I believe it’s important to expose them to all sorts of things, it might not seem it at the moment but it will help to build up their resilience and help them to function in society.

    1. I don't think we can really say yet whether it will help with the future sadly! But we try what we can, without putting undue stress on her x


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