Wednesday, 20 February 2019

Autism friendly roller skating

What our family really needs, right now, is an autism friendly roller skating session. Actually, I'll be honest here and say that I've used that phrase 'autism friendly' to grab attention, not something I do very often. It's is a phrase loved by some and hated by others, and I can see why. 

Part of the problem is that when an event is advertised as 'autism friendly', it instantly excludes or puts off those who may need the help but who may not have an autism diagnosis. They may be SWANS (Syndrome Without a Name), may have a different diagnosis, might have been on a waiting list to see some professional or other for many months, or may have no specific diagnosis at all. It's a similar argument to the one around the idea of autism friendly shopping hours... I can think of many people who would benefit from quieter shopping environments and more understanding, not just autistic people. 

Truth is that there are very few 'autism friendly' events that I can access with my autistic daughter anyhow. There are so many things that cause her extreme anxiety - mostly the underlying Pathological Demand Avoidance, but sensory issues also play a large part. Leaving the house at all for any activity can be a huge challenge. That's why I was so delighted when she agreed to try ice skating with us again last Christmas, and we enjoyed a session together as a family. Family outings happen very rarely for us. We'd only been able to try ice skating the previous year because a big local group for children with autism had booked the whole rink out for some quieter sessions, and that was one time when Sasha did feel like she could give it a go.
steph and sasha on ice rink
The ice skating was then followed by a return to the roller rink in the new year. Sasha went roller skating a few times when younger, as part of a group who managed to book the roller rink once a month for a 'special needs' session (another phrase which needs its own blog post) for girls on the Spectrum. Girls, not boys... autistic boys could have their own group and do their own thing if they wanted to, right? Another argument over segregation and whether it's acceptable... where do we draw the line? No more Cubs and Brownies?! Anyhow, I digress. That's a bigger discussion for a different blog post perhaps.

I was over the moon when Sasha decided she would like to take up roller skating as regular sessions. I took her to a Saturday or Sunday morning session (because fewer people make it out of bed in the mornings, so they are generally quieter) four weeks in a row, and she gradually built up some confidence. This was her happy face when there:
sasha grinning at roller rink
Big sister was busy rehearsing for a show so Sasha felt a little sad that she was skating alone each week. I tried skating with her once, but apparently I'm rubbish and so she didn't want me to try again. Sasha was determined to give it a good go on her own though and looked forward to when her sister could join her again after the show production was finished.

Today was that time, and I can tell you what I've learnt. Roller skating in half term was a silly idea.

Too noisy and way too busy. Sasha could have just about coped with the noise on the rink - although why they feel the need to play the music quite so loud I have no idea. Maybe I'm just getting old though?! There were more children skating than any other time we've been before though, and a lot of small, wobbly children in particular. One little girl nearly took Sasha out by falling into her, and it was at that point that Sasha finally decided she couldn't manage any more. She stormed off the rink and wanted to go instantly. We'd been there for around 20 minutes of the two hour session we'd paid for, and Sasha's brow had been scrunched up the whole time. Anxiety was radiating from her.

A meltdown began to take hold; fists clenched, hunched up on a seat, shouting through gritted teeth that she wanted to go, not letting me be near enough to hug or calm her down. Not many people would have noticed though, because as she gets older, Sasha has learnt how to internalise these meltdowns more. She was furious with everyone there, me included, angry that there were too many others and she couldn't cope. She hissed that it was awful and she would never be able to skate again, ever, because it was such a terrible experience, and my heart sank. 

Big sister would possibly have liked to carry on skating, but once Sasha was off the rink and definite about not going back, she knew that her time was up. She's very good at reading the signals too, and can see the stress when others can't. As a sibling to someone with Pathological Demand Avoidance, she has had to accept that we just need to leave anywhere when that time comes. My heart breaks a little bit for her too. I wish I could protect them both from these challenges and keep them both happy all the time, but of course that's impossible. We try to make up for it in other ways.

What Sasha needs, and what many more children would no doubt benefit from, is a rink with fewer people on it. A time when they limit numbers, so that it's quieter and less scary. Of course that doesn't fit with a business model of making as much money as you can. If you have plenty of paying customers who are not bothered by the crowds, why would you take less money? To be honest, at times I'd willingly pay more money for Sasha to enjoy herself if the option was there. Not that it should have to cost us more just because she faces more challenges than other children.

So today I've had to add 'contact roller rink' to my never-decreasing to-do list, to see if they would consider re-introducing some quieter sessions. If we're 'lucky', we'll be offered something very early or very late once a month, which won't help inspire Sasha to carry on with the only sport she currently loves. Maybe the answer is to build our own in the back garden?! Keeping my fingers tightly crossed for a lottery win. Then I'd build one and offer it out as a non-profit making option to any children who struggle with noise and too many people.

I'll leave you with this super short video of Sasha enjoying a skate at a slightly quieter session recently. Let's hope it's not the last time she can do this.



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?

Autism with demand avoidance or Pathological Demand Avoidance?





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4 comments:

  1. I can totally underunderstand the frustration, upset and disappointment. We hand similar last week in half term when we went to soft play and it was full. The fall out was huge. I just wanted to say I understand and as an aside I too can not fathom why rinks equate loud music with enjoyment. It doesn’t create atmosphere to me it creates headaches.

    ReplyDelete
    Replies
    1. I do love music, but think it could be on quieter and no-one would complain! Full places are not fun for anyone :(

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  2. Totally get this. What a shame for Sasha, and you all. I really hope the rink comes through and realises the need for quieter sessions x

    ReplyDelete
    Replies
    1. Thanks, fingers crossed that they will reply to my email! x

      Delete

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