Wednesday 22 March 2017

Odd socks for World Down Syndrome Day

Yesterday was World Down Syndrome Day 2017 and at our youngest's school, there was an invitation for the children to wear odd socks to mark this event.

Steph's Two Girls odd socks World Down Syndrome Day
#lotsofsocks for World Down Syndrome Day
To highlight what an achievement this photo is for our girl, you'd need to know that she has always struggled with sensory issues; too much noise, too much light, and too much heat can all affect her. She has always found clothes difficult to wear; not necessarily sensitive skin as such, but just a heightened awareness of the feel of different fabrics on different parts of her body.

I've written several times over the years about the difficulties associated with clothing; funnily, as I looked back myself, I found this one from March 2012 which bemoans the lack of suitable dresses in the shops for her (particularly at this time of year - I've been looking in the past week this year and only found one). Suitable dresses are made from soft jersey, preferably with a swingy rather than tight skirt, they are short-sleeved, and they don't have any sequins or other sorts of embellishments on them which can be felt on the inside. If you see anything matching that description in the shops please do give me a shout!

Between the ages of two and four, Sasha refused to wear any socks at all. Not even in winter, when it was snowing. For a while it wasn't a huge issue as she'd wear those types of boots which are soft and furry, but then she started to refuse those too. We'd have periods where she'd get blisters from wearing pumps with no socks. Then when she did agree to wear socks again, we'd have very stressful times trying to get them on 'just right' so they didn't feel 'funny' and irritate her. Eventually, I researched and found the brilliant, but very expensive seamless socks at Cost is almost £6 per pair, but they have been worth every penny for the last few years.

So this makes it all the more amazing to me that Sasha agreed yesterday to wear an odd pair of socks with seams. She did this with no hesitation when I explained that it was to highlight this special day for all children like a certain boy in her school, whose company she really enjoys.

So why odd socks? The socks are because they vaguely represent the shape of chromosomes apparently. Typically developing children have 2 chromosomes on chromosome number 21, but children diagnosed with Down's Syndrome have 3, and it's known as Trisomy 21. About 2 babies are born with Down's Syndrome in the UK every day, so that's actually not as rare as some might have thought. There are some other great facts, over on the Firefly community, written by the lovely Hayley from Downs Side Up.

A couple of months ago, I had an interesting conversation with Sasha. Well, you know, it was more of a super quick chat, much more her kind of thing, but it was a 'talk' nonetheless. She'd mentioned the fact that this boy at school was playing with her, and had been doing some of the smaller group sessions with her, and I can't remember what her comment was, but it somehow prompted me to ask 'has anyone mentioned the words Down's Syndrome to you?'.

'No,' she replied, 'what's that?'. At which point I berated myself for asking a question without having an answer prepared. I made a very basic attempt at explaining it, minus the chromosomes part, and what Sasha said next took me aback slightly, I'll admit.

'Oh, is that what I have too?'

I actually found it quite refreshing that she didn't see any obvious difference, but it did highlight the fact that she now recognises that she is different from the other children and more like that boy. Quite possibly she's realised that for a while, but as she struggles with conversation it hasn't been discussed before now.

Following that chat, as I searched online for some ideas on how to explain to children about Down's Syndrome, this post from Sipping Lemonade jumped out - and it seemed to mirror my experience of telling Sasha she has autism. Maybe we don't need to tell children quite so much, but as adults, I think we should all try and educate ourselves a little more about everything to do with life, wouldn't you agree?

This infographic was designed by Firefly and I hope it helps, alongside reminding children to be kind, always:

Down's Syndrome Infographic


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