Sunday, 21 October 2018

Siblings {October 2018}

OK, so I'll have to admit, it's been a tough weekend for my siblings, and for me. A tough few weeks for us all if I'm honest; the downside of getting Sasha to school (most days) is that she needs a long time to recuperate and de-stress after school and at weekends. I would jokingly say 'I know how she feels', but of course I don't. My everyday life is nowhere near as difficult as hers - and that's with us placing very few demands on her at all.
stephs two girls in garden October 2018 siblings

As a parent, it can be so frustrating and almost painful to see your child doing next to nothing when you are with them. Sasha's comfort blanket (apart from the one I had to drive back to school with on Friday) is her technology; she watched YouTube videos to de-stress.
As I've mentioned before, Sasha also uses YouTube as a way to communicate by leaving comments which we do of course monitor; they give us a few laughs at times but also make me feel very proud of the progress she's making in many ways. She's even recently made her own short animation film to share on YouTube - she has said I can share it as long as nobody praises her about it. So here you go, try this. I think she'd be happy with a thumbs up!

Her progress at school though, comes with a knock-on effect. I remember after she stopped attending her mainstream school, several people commented on how much more relaxed and at ease she seemed. After eight months off, we had settled into a routine where life didn't seem impossible (apart from the battle to get her into a school) and some simple activities were possible. She even started a brand new trampolining class and manged to achieve some badges - not something I'd thought would happen when we started.

You see, it's never a case of me being able to drive and lead activities with Sasha. The pathological demand avoidance and her anxiety mean that she always needs to be in control, and it's clear that her anxieties have risen since being back at school. I'm in no way blaming school for this; it's likely to be a challenge of her age mixed with the demands that any school environment would bring.

My parents are with us this weekend and while I absolutely love having them here, and they are thankfully so understanding about the way we have to live our lives, at the same time I feel incredibly sad and almost embarrassed that we can't do the things that typical extended families would do - going out for a lovely Sunday pub lunch, or taking a walk in the countryside all together. Instead, we spend the day not being quite sure what we can achieve - might Sasha agree to a bit of swimming today, or fresh air in any form? As much as Sasha loves swimming, it has been a while now since she has agreed to go. She finds it difficult to leave the comfort and safety of her sofa, her anxieties getting the better of her. It's not sheer laziness; she says she wants to go but just can't. At lunch time today she eventually conceded that she would go outside in the garden at teatime, because she prefers the evening air as it smells so fresh.

So that's what we had to work with, and hope for, and right up until the last minute I was using all the strategies I could to get her outside for fresh air after yet another weekend inside the house. The weather has been so gorgeous all weekend and I'd have loved to go for a long walk myself but felt like I needed to be on hand for her whilst getting the usual mundane jobs done. Today I persuaded big Sis that it was important for Sasha to be outside and so we joked with her together, finally achieving what seemed like the impossible. I can just imagine how others think this is crazy, that I should just tell her what to do, but unless you live with PDA you really cannot begin to comprehend how difficult the simple every day things are.

We made it out; Sasha dashed around the garden refusing to be photographed but laughed as she ran. We had a fabulous half hour, even if I don't have any amazing photos to show for it. Fresh air should not be underestimated; but then neither should how difficult it is for our younger daughter to do simple activities.




This may well be the last ever siblings photos for us, as Sasha has announced her hatred of having her photo taken. We'll see!



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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2 comments:

  1. So glad she made it outside. It really is a huge achievement and I understand that so much! Much love x

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    Replies
    1. Thanks lovely. It wasn't easy, but definitely worth it! Small steps to remind her what fun can be had, hopefully... x

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