Friday 21 April 2017

A short walk: The trouble with going out

Today, I actually managed to get both my girls out of the house for a short walk.
Stephs Two Girls in Bluebell wood

Sounds like a pretty 'everyday' thing to do, doesn't it? Nothing to shout about maybe? For us though, this doesn't happen on a frequent basis. It happens rarely. That's partly why I decided to write a blog post about it.

Today we had a lovely experience, for about an hour. We dropped into our new house very briefly so I could show the girls the new carpet which has been laid in Sasha's room (they weren't even keen to do that) and then we went for a walk in the beautiful bluebell woods. The girls worked together, not exactly as a team, but side-by-side, building a den with all the wood, and they were happy.
Stephs Two Girls building a den

At the beginning of the holidays, I started to type a post about how, as a parent of an autistic child, it can be quite difficult browsing Facebook at holiday times in particular. Lots of beautiful photos, and stories of grand days out - 'we drove about an hour away to visit a museum/funfair/exhibition/park/football ground, followed by a meal out, then met up with good friends whose children played happily with my children so I could sit, have a chat and drink with my friend, then we all strolled around park and played in the playground after buying ice creams, and nobody cried or said they wanted to go home (meaning we had to leave early) all day long!'

OK so maybe I've exaggerated this a little. But there's so much in there (everything) that is just impossible for our family 99% of the time. What upsets me the most about this, is that I wish it wasn't like this for our fabulous sibling, who can't help the fact that her sister has difficulties. As a mum I will always have that 'mum guilt' that I can't give her the 'typical' family experiences that I assumed we'd all be enjoying at this stage in our lives. Selfishly, of course I'd like those 'expected' family times for me too, and I do think about how much easier it would be, but I do now accept the fact that it will always be different for us. 

And then, I reflect on the fact that there are many families who can't give their children what they'd like, for a huge variety of reasons. I'm not talking about those who are just going through a difficult time which will pass and they can then get back to where they wanted to be, I'm thinking of those whose lives are just, well, different. Whilst on the surface it seems like some families get to have those seemingly perfect family days out fairly often, it's true that we know nothing about what is happening in the rest of their lives, away from Facebook. 

It's a very general problem with Facebook, that you only get to see the happy photos and you have no idea what is going on in other people's lives at the other times which are not being shown. Everyone has their own issues, not everyone shares them in a blog or on Facebook, and I get that not everyone agrees with others doing so.

That post, which I didn't publish but have just summarised, wasn't intended to be a 'poor me' post. I was thinking more along the lines of sharing how difficult the everyday, mundane things can be for all of those whose lives involve Pathological Demand Avoidance - and that includes the children themselves who have this condition.

I know, because of the feedback I've had via my blog and via Facebook groups, that there are many families out there who feel trapped. They feel like prisoners in their own homes. Some of them experience terrifying violence on a daily basis - and some of those people go on to find that their day improves as rapidly as it went downhill and they can then leave the house after all. Everyone's experience is different.

I'm not sure I can really do justice to explaining how difficult it was for us to leave the house in the first place, but I know that some others will get it. Others may think I'm crazy when I say that today, Friday, was the first time this week we managed to go anywhere, but it's true. I know I'll be judged when I say that a bribe beginning with the letter 'M' was involved (or is that a reward? Depends which way you look at it I guess), but you know what? I really don't care. We got out, the girls had some exercise and fresh air, there were smiles, I took some photos, and the world was good for a short time.

Keep Calm and Carry On Linking Sunday

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