Thursday 9 November 2017

How does it feel to be a sibling to a girl with autism?

Back when I first started this blog, before I even wrote my first post, I was always determined that the blog would be about not just our autistic girl, but about her sibling too. That's why it was called Steph's Two Girls (true story. Also, I'm not very creative. And do you know how difficult it is to find a webpage/blog name that isn't already taken?!).

So fast forward nearly eight years since that very first post where I shared the news of an autism diagnosis for our youngest, and we come to a time when our eldest is twelve and has spent ten years living with her sister who has Pathological Demand Avoidance.

We never hid the diagnosis from Tamsin - or from Sasha, but Sasha was less able to understand it for quite some time and has only really begun to understand what it means this year. Tamsin on the other hand, has always been very aware of 'it' and has had a pretty different life at home to many other children of her own age.

Today I am introducing a short post which Tamsin has written about how life with her autistic sister has been for her. These are words directly from her; I've always been keen to try not to influence her in any way as I appreciate that her feelings about this situation are her own and not something I experienced myself as a child. She's keen to point out that some of this post she wrote around three years ago, when she considered starting her own blog... life has been busy since then, of course!


Hi, I'm Tamsin and this is my takeover. 

I have an autistic sister who has PDA (a.k.a. Pathological Demand Avoidance). Having PDA doesn't mean you are weird or different, having PDA just means that your brain works in a unique way and you have a different view on life. 

Have you ever been walking in the park and you see a child having a 'tantrum' or being just generally naughty? Sometimes you're right, or the child might have behavioural issues but sometimes it might be PDA causing them to behave like this. 

Living with someone with PDA, like my sister, is sometimes very hard and sometimes it isn't - it's fun and enjoyable.  Sometimes I think I get great opportunities that other children don't get, and sometimes I will have experiences that are difficult, which other children don't have either. 

Here are some difficult experiences I have had, recently and in the past:

I was playing Roblox with Sasha to make her happy just before I had to go out to rehearsals. Then when I told her I had to go and get ready for the show (even though I told her beforehand so that she wasn't surprised), she started getting angry. She threw a toy across the room and then she told me that I was the worst sister ever, and I got upset by that. She tells me that a lot but I still get upset each time. 
However she also tells me a lot that I'm the best sister ever, like when I told her I'd play Roblox with her, as I haven't played with her for a while.

Some of the children in her class came up to me one day and asked me what she was doing playing around in the mud. I was quite young (around 7) and I couldn't explain to them what autism and PDA were, so I just said she liked doing it. And then I realised it was true. She did like it, she liked it because of her PDA, because it calmed her down. 
Lots of things calm her down, like watching YouTube constantly while she plays Roblox or Minecraft or the Sims or while she does some drawing or playing with some toys. It's quite nice to see her relaxed but sometimes it can be annoying with YouTube always playing in the background of everything when it's quite loud. 

Here are some good things:

When we went to Florida, we had a villa which had a pool in the back garden. One morning when it was nice and warm we all got ready to go swimming. Sasha whispered (rather loudly, to me) and told me a plan to push my dad into the pool because it was still cold. I said it was a great idea and we went ahead with her idea. There were lots of giggles and my dad ended up drenched in cold water before anyone else had got into the pool. 

More recently, Sasha and I went to a park that I hadn't been to before, with one of my friends. Sasha wanted to show me around the park so I let her (my friend also has a sibling with additional needs so she understood) and then afterwards Sasha  let me go and play with my friend separately (which was very nice of her). Sasha then came back after a while and asked if we could play together, and me and my friend said yes. Overall I had a great day that day and it just shows that some days I can have great days!


Later on today Tamsin will be taking over my blog Facebook page and answering questions from anybody who is watching. We've already got some lined up, such as 'what is the best thing and the worst thing about having a sister with autism?' and 'what have you learnt from your sister with PDA, and what can she learn from you?'. More questions would be great, or just general comments and shares of similar situations to know she's not alone - please do pop along to at 7pm and show her some support if you can.

If you enjoy reading my blog I would be so happy if you would consider nominating me in the BAPS blogging awards - nominations for me or any other amazing SEND blogger can be made on this page:

 Full details on what BAPS are in my recent post 'What on earth are the BAPS?'

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