Wednesday, 6 November 2019

When a day out is not what it seems

Since May this year, there have been far fewer posts published on this blog overall than over the previous year. I've been tending to write shorter daily updates over on my Facebook page, such as the one I did about our Halloween here. I wasn't sure if I should even write this blog post today, if I'm honest. Partly because my words are being watched in more ways than one, and that's a lot of extra pressure to contend with. I'll expand on this a bit more below.
sasha walking alone down a path
Sasha walking down a path alone in summer. One of the few times we have made it out of the house.
May was the month when Sasha stopped attending school, just before her twelfth birthday. I haven't explained 'why' or what happened at school in any detail; it's actually a little too complicated to fit into one blog post to be honest. Sasha was hurt badly by it all and there are ongoing issues. I've spent months trying to pick up the pieces, but I'm still not sure I'm doing enough, or doing well enough. Sasha is now old enough to read and approve (or not!) my blog posts, so I do also take that into consideration now, every time I write.

My current role, apart from being a full-time mum, carer, teacher, hairdresser, counsellor, admin assistant, chef, buyer (ha! my original job/career) and all the rest of it, is to try to engage with services to find out what the best way forward for Sasha is. At the same time as supporting our eldest daughter and making sure she does remain 'Fine in School'. 
I can't lie, I'm feeling exhausted. Drained both physically and emotionally, but I know that I will carry on doing what I can for all of us. I wish it wasn't such a battle; I personally think I've done an OK job of it all so far and I don't regard asking for help and support now as a sign of weakness. I don't want to get to breaking point first. When I saw this post called The Truce from PDA Parenting last night, I nodded along to pretty much every word. There's a small part of me still hoping that common sense will prevail, and that everyone will want to do what's best for Sasha.

So every day is a non-school day for Sasha at the moment. Every day, I try to engage her in learning or activities, and nearly every day, nothing much happens. She's watching a lot of YouTube, in her pyjamas. There will be many people who judge me for that, but they won't know or understand the full story - again, too long for me to go into in detail here. But yes, it's Pathological Demand Avoidance in a nutshell, extreme anxiety now mixed with the trauma of what happened at school. 

Today though, we made it out of the house. This only happens about once a week on average; and it only happens when Sasha feels able to face the world outside. It has to be a pretty special event to get her out and I'm constantly trying to think of ideas and activities for her. This time, I suggested returning to a place we went as a family over summer - it's often easier to return to somewhere we've already been than to try anything new. Nostalgia plays on Sasha's mind a lot, and she can sometimes be tempted with a place where she has been happy before.

So we agreed to go to an indoor inflatable jump park which is a 40 minute car journey away. I tested the water to see how brave Sasha was feeling, and threw in the idea of a very quick stop off at the IKEA on the way. It's been a long time since Sasha has been in any shop, let alone one the size of IKEA, but I'm in desperate need of a new office chair to help my poorly back, and some other bits of furniture so I figured it was worth a try. She agreed, I jumped for joy, and I posted our plans on Instagram and Facebook. Which is partly why I've felt I had to write this post, to be honest.

People will see that we've been out and perhaps assume that if Sasha could manage what we've done today, life can't be as difficult as I say it is for her, and she could manage other things. I'm often saying that she struggles with car journeys because of sickness and anxiety (in fact this goes for any kind of transport) so how come she could manage this? Why should she get to go and have fun on a school day rather than not go to school - all children would rather do that, surely? I get that people might jump to those conclusions and have those sorts of questions, really I do. But they are not seeing the full picture.

All the effort it took to get Sasha out of the house in the first place is not obvious. The plans A, B and Z which are always running through my mind are not visible. Not everyone realises that Sasha can only cope in the car if she has control of her own music playlist - or no music or sound at all if she's feeling particularly stressed. There's definitely no chatting. Because I'm so used to being with Sasha all the time, I can guess at some of the thoughts running through her mind, but not all of them. I needed to try to explain what happened today to at least attempt to get closer to that fuller picture. 
Sasha looking in bedroom set up at IKEA
Our IKEA visit was great. Initially. Sasha totally loved all the room set-ups and went into each one, admiring them. By the time we'd made it half way round the store to the office chairs though, Sasha had already had enough. She was too tired and frustrated to let me properly try out all the chairs or to look at the furniture options I needed to - so that's a job for me some other time then. Not quite sure when. I joked her through to the end and we left with two gnomes, no furniture. Not even the mirror for her which she had been keen on getting when she saw it at the start of the shop.
sasha looking in mirror
Next we went to the indoor inflatable park. It was empty, we were the only people in there jumping. 
sasha outside the jump park entrance
Sasha struggled with the noise of the pumps for the inflatables but her desire to get on and jump just about outweighed that and on we went. Nobody else around meant Sasha was free to enjoy whatever she wanted; crowds are an issue for her and so are noise and the idea of other people watching, or judging her. We had a great twenty minutes exploring everything (except the slides. Sasha has too much fear about the slides) and we laughed lots.
Sasha sitting on large inflatable
But then a small group of around six boys turned up with a couple of carers (who sat in the cafe). They were a similar age to Sasha and all wearing school polo shirts. I guessed they were from a special school much like the one Sasha is no longer able to attend. I held my breath as I wondered what Sasha's response to this 'intrusion' on the inflatables would be. She surprised me by heading over closer to where they were and jumping quite near them, rather than staying out of their way.

After a short while though, Sasha retreated and told me she didn't think they were impressed by her jumping, as they had much better parkour skills. The conversation moved on to the fact that they were boys, and Sasha referred back to our visit to IKEA and how it had made her think about wanting to pick furniture for her own house when she's grown up, and that in turn had made her think about how much she wanted a mate. At this point, she was talking about a life partner, someone to share the future with. Yes, she's 12. The future is always on her mind.

Sasha then became very upset and told me she was depressed. She slumped and said it wasn't fair, at least those boys were there with someone, they had friends. I pointed out that they were most probably just children who spent the school day with each other, not necessarily all friends, and Sasha replied 'yes, but at least they still have someone to talk to'. Soon after, the song 'reach for the stars' came on and I tried to cheer Sasha up with silly dancing and telling her that we had each other, but this just made her more upset. We left under a black cloud, not a happy ending to what should have been a fun trip out.

So that's a lot of words, and they don't even cover all of what's gone on today. Some people might assume it's a fun trip out but behind the scenes there's always so much more going on. Often, it's very difficult to explain but I hope that by sharing we can help others understand a little more.



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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6 comments:

  1. Glad you got out and you managed some highs amongst the lows. Would sasha write to somebody, a penpal maybe? Perhaps that could help with the loneliness. I have a feeling I might've read something along those lines before though. Hope you get your new chair soon! X

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    1. Ah thanks - sadly Sasha is not a fan of writing, but the whole communication aspect in any form is quite tricky for her. Good idea which might work for others though! x

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  2. Thank you for the mention in here, very much appreciated. Ok, I feel I could have written so much of your words myself. Arijana is mirroring Sasha’s thoughts too, I think that others do not realise the impact it has on our children when they feel socially isolated. My daughter has just lost her one friend who she used to spend time at the skate park with, now I can’t even get her out of the house to go there. I think it’s clear from your post that Sasha is not happy out of school, it is not her choosing or her self-esteem would be higher. The only thing you can do is just keep pushing on to get her some appropriate provision, however that may look. Somewhere in that, she needs access to her own peer set. With the right support and adult intervention when needed, friendships are possible. I feel Sasha has been failed hugely xxx

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    1. Yes, both our girls are being failed. It's not their fault! They deserve better x

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  3. So sorry that you're going through this, but thank you for making this family feel less alone xx

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    1. Huge hugs to you too. There are many of us, we should have a big group hug! x

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