Sunday 9 June 2019

When life isn't easy

Back at the beginning of this year, Sasha decided she would like to take up roller skating as a hobby. This came off the back of some ice skating sessions which we'd done as a family over the past few years. I love this photo of Sasha's happy face during one of our skating sessions:
stephs two girls sasha happy at roller rink
We probably made it to about six sessions in a row before Sasha decided she couldn't cope any more - I talked about the final doomed session in detail over in a Facebook page post. However, we were all still fairly optimistic at that point that it was just a blip and that Sasha would return to skating at some point - so much so that we booked her 12th party to take place at the roller rink in June. 

There were complications to that of course; nothing is ever straight forward about parties when you have a child with autism. We had to book the whole rink out even though Sasha only wanted to invite ten children, and that meant we could only hold the party in the morning, when there are no other sessions on. Despite being at her new school for nearly a year at this point, Sasha hasn't made many new friends like she'd hoped and so she decided that she wanted to invite her old friends from the mainstream school she used to attend two years previously. So I sent out invites and kept my fingers crossed that some would be able to make it...

We hadn't been roller skating again since March and with only a week to go until the party, Sasha began to get anxious that she would have forgotten how to skate. She wavered, but decided that we should go back to the rink this weekend to try again. The weather has not been too good lately so I wasn't sure if the rink would be even busier or not; I tried to talk Sasha through the fact that it might be and we didn't have to stay if she wasn't enjoying it. Big sister was going to come with us though to hopefully support and encourage Sasha if it didn't go so well.

We arrived at the car park and it seemed fairly empty. Inside, there was no queue to get in; we arrived only two minutes after the session started so I knew this meant it wouldn't be too busy. However, even from outside the building we could already hear the loud music coming from the rink, and once inside it was deafening for Sasha. She stood for five minutes with her fingers in her ears, trying to acclimatise, but looking worried. I helped put her roller boots on and together with big sis we made it onto the rink.

Sasha seemed fairly steady again, but in her head she clearly wasn't. She began to get upset at others holding on to the side and going slower than her. She didn't trust herself to let go of the side even though I was holding her other hand; she just wasn't feeling confident enough. We did two full circuits of the rink but Sasha was tense and on edge the whole time. At the end of the second lap she looked at me angrily and pushed me away to get off the rink by herself. She returned to the seats where we put the boots on and sat down heavily, with her head in her hands, down on her knees. She was curled up tightly, screaming through gritted teeth, angry at me, angry at everyone else on the rink for not going at the same speed as her, angry at herself for not being able to cope with it all.

Years of experience have taught me that Sasha was in meltdown mode and there was very little I could do which would make it better. Plenty I could do which would have made it worse, such as trying to talk to her, offering solutions, laughing it off... none of that would have worked. I know that because I'm her mum, I spend so much time with her and I've been through similar situations. I wouldn't blame anyone for trying any of those options I just mentioned, because they couldn't know as I do that it would have made things worse. So I sat next to her, initially with just my hand around her back gently, but that was soon shrugged off and all I could do was sit, and wait.
stephs two girls roller skates
I didn't want to take a photo of Sasha's pain, but this reflects our day more clearly than the happy smiley face above...
As I sat, I was reminded of the post about The Inhospitable World which I'd seen from Danielle at PDA Parenting just that morning before we left home. Whilst Sasha doesn't tend to explode so much but instead internalises her anger more than Danielle's girl, the emotions are fairly similar, both for the girls and for us as parents. I looked around and knew that there would be very few people in that roller rink who would understand why Sasha was sitting with her head in her hands after just five minutes of the session. I was grateful at that point, for the music which was playing so loud, as that ensured that Sasha's strangled screams couldn't be heard even though the stress etched on her face must have been plain to see. Luckily, everyone else was going about their own business, enjoying their own happy family time in this entertainment venue.

We continued sitting in that position for around 20 minutes. After a while I was able to put my arm around Sasha, as some of the worst anger had subsided. I suggested leaving but couldn't hear Sasha's reply. I tried to unlace her roller skates but Sasha responded by kicking her boots out furiously. She didn't want to stay, but she didn't want to leave either. One huge, crushing disappointment. I'm not ashamed to say that tears came to my eyes, and still do as I type this now - it's an overwhelming sadness for me that she feels all this so deeply. She wants to be able to cope, to do things that other girls her age do, and to not react in the way she does, but it's just all so impossible for her.

Big sister was amazing through all of this. She sat with us for a while, went back on the rink a little bit then returned, tried to give her sister a gentle hug... she saw, and she understood. She'd rather not have the embarrassment of other people staring at us, and she'd rather enjoy fun family times out of the house, but she accepts and deals with our situation for what it is. I have no doubt that recent events at school have led to Sasha's anxiety levels running extremely high, and we will need to work hard at trying to find her calm and confidence again.

Eventually, after over half an hour in the venue, we left, Sasha angrily stomping her way back to the car. I'd suggested McDonalds as a reason to leave, something to make her happy again. It worked in some small way, but can't take away the pain for her. Now we just have to see how the party goes next weekend..... wish us luck!

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 so feel for you. And totally get it. We had a real situation this week due to the wrong size school shirt being ironed, then being too tight, then making us late as I had to iron another shirt, so it all ended up that D didn't do the violin concert he had rehearsed so much for. Heartbreaking tears (from me and him!) because he feels this all so deeply. Feels he puts too much pressure on himself (very perfectionist) but can't attempt anything without wanting to be an expert.
    So we carry on, and learn from each 'event' ('incident'?)and hope that overall we make it better for them in some way.
    Sending lots of love x

    1. Yes, at some point we have to accept that we can't change everything, we can't make the world perfect for them, and they won't always learn from their experiences like other children might... but we still have to have hope for the future x

    2. "They won't always learn from their experiences like other children might." This is one of my deepest pains for my child. I want so badly to help him so that he can learn from his experiences and not have to live through so much hardship.

  2. ((Hugs)) I'm so sorry that things ended so poorly. As for the party next week, can you ask that they either turn off the music or turn it down? Will Sasha tolerate noise canceling headphones?
    I'll be praying that you are able to find some things that will make for an enjoyable time. Hang in there.

    1. She's not a fan of headphones sadly :( but if the party goes ahead I'm hoping we can control the volume!

  3. Chin up, keep on keepin' on. xx

  4. Lots of love Steph. I'll have everything crossed for the party x

  5. I’m in tears reading this, I feel like I’m there with you, it’s just so easy to relate to. The picture of her boots speak a thousand words. A desire to do it but she just can’t. The inner frustration, the anger. I really hope next week goes smoothly, Sasha deserves it. Thank you also for sharing my post out too, such similar emotions xx

    1. Yes, similar in different ways but those feelings inside and the desire to 'be normal' there for both xx

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  7. Good luck with the party: we've just had a bad week, followed by a fairly good week, so hopefully it will be the same for you (C) xx

    1. Thanks - am hopeful that improving weather next week will help with that!!


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