Tuesday, 5 June 2012

The Diamond Jubilee & Social Isolation


Missing from our Jubilee celebrations

It's a shame Chrissy couldn't join in with the fun. After another sleepathon (21 hours, followed by three awake then back to bed for another 10 hours) I hoped she would wake up as jolly & refreshed as she’d been two weeks ago on our trip to Exbury Gardens. Instead, Chrissy's mood on Sunday was fractious and shouty. She came downstairs after her morning bath and obsessively switched lights on and off, and carried out her rituals of rearranging objects in the kitchen. The signs weren’t good but I hoped that she might settle down after breakfast if we could get her to sit down long enough to eat it. I made her a picnic to take up to the field where our village was holding Jubilee family events. It’s only a stone’s throw from our house but Chrissy had made up her mind that she wasn’t walking anywhere! I let her sit in my car for a while, as it sometimes calms her, but she kept getting in and out, and became increasingly agitated and screamy. I reluctantly conceded defeat, and Ian took her back to the assessment & treatment unit while our house-guests and I got ready for the afternoon’s Diamond Jubilee events.

It was all great fun. Mum, my two friends, Ian & I lunched on a hog roast and chatted to other villagers as local children took part in games. If I’d brought a fold-up chair & Chrissy’s picnic lunch, she may, just MAY, have enjoyed herself without any big dramas but I quickly spotted potential pitfalls. They include a small paddling pool full of soapy water, lots of dogs and small children to fixate on and terrorise, crowds, queues for drinks and food, the threat of rain……We all agreed that it was a good idea not to bring Chrissy. She hadn’t been in the ‘right’ mood and it probably would have ended in disaster (worst case scenario = throwing herself down on the grass, stripping naked, and screaming and self-injuring.)

We got back home in time to watch the Thames river pageant then in the evening we dressed up for the party – my friends and I wore fifties-style dresses with nipped in waists and big skirts, and danced the night away in a marquee to a brilliant live swing band. As we oohed and aahed over the finale – a magnificent firework display – I thought how much Chrissy would love this part, but not the rain!

I had a marvellous time and got swept up in the mood of the occasion but as always during special celebrations, I had moments of wistfulness. The Queen’s Diamond Jubilee is a time for communities to come together, but it also highlighted Chrissy's social isolation.


I am a SWAN UK (Syndromes without a Name) blogger
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6 comments:

  1. Very sad for you and Chrissie, and I totally relate to this as I can never tell if Smiley will enjoy anything, and as for aspie boy, if he says he doesn't want to go, there is no point in making him as he will just make the whole outing miserable. So social isolation it is here too! Thank goodness for the internet x

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    1. We have to keep trying though don't we? Every time we manage a successful trip like Exbury it spurs us on to try again. We're trying Marwell Zoo next Friday &, depending on how that goes, we're thinking about a short break, probably to a Centre Parcs not to far away with Chrissy. Good luck with your family outings! x

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  2. Dominic often struggles with public events too, despite being very sociable. He was most upset at the street party we went to that he couldn't go on any of the rides and spent the entire time asking to go home. This is a beautiful post, happy with a vein of sadness running through it, which is a common theme for sn families it seems

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    1. Thank you Renata. Yes, you're so perceptive to pick up on this 'vein of sadness.' Hadn't thought of it like that but you're absolutely right - the bittersweetness of our experiences is reflected in all our blogs.

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  3. Agree with Renata Jane, it's a lovely post but with that hint of sadness that often colours many aspects of our lives. It is sad that chrissie couldn't be part of th celebrations but it clearly wasn't in her best interests to try and make her go when she wasn't in the right frame of mind. Hopefully there will be other social occasions she can enjoy in the near future.

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    1. Tonight may be the night LittleMamma. Off to Marwell Zoo but torrential rain forecast - & if there's one thing Chrissy hates....

      You're right though about best interests though. Sometimes we have to remember what they want, not what we want for them x

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