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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.










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Tuesday, 18 April 2017

House Renovation - Part 13

House Renovation update Part 13... unlucky for some.. I was almost tempted to skip this one, as I don't think we need any more bad luck! However, I did decide to get number thirteen over and done with quickly, and it brings you all pretty much up into real time now. 

Wonder how many more updates I'll get around to giving you?! Fifteen would be a nice number, as that's one for every month we've had the keys to this house and not lived in it!

Pink ombre painted wall


So I'll start with a 'Ta-dah!' (above). What do you think of the new ombre wall? Special request from our youngest of course; she adores all things pink still whereas eldest is of course way too cool for that now. Carpet should have gone down in this room today, along with flooring in the bathroom and en-suites... I say *should* as my girls are still off school for Easter holidays so I haven't been able to get over there to check yet. Fingers crossed and all that.


Here's the video update. You can probably sense a little bit of panic creeping in at the end, as I talk about our move date. In around three weeks we will need to be living in this house, or should I say building site. Eeek! It really will be largely unfinished - at this point I already know there will be no 'proper' flooring laid downstairs, no carpet on stairs and landings, no worktops and possibly no roof for one part of the new build. Oh joy. Still, we're going, so that's that. Will make the best of it and hope that it doesn't stress our youngest girl out too much.

There are still a few decisions to make although most of them are now complete. There have been compromises along the way, and lessons learnt (she says ominously, preparing for an in-depth post at a later date), but at least some time later this year most of the pain will be over (again, crossing fingers tightly).

For anyone who uses Instagram, I've started a new account over there to show all the 'before and after' house pictures. It's called stephsrenovation and if you're interested you can follow me via this link: www.instagram.com/stephsrenovation


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Monday, 17 April 2017

Siblings {April 2017}

My two gorgeous girlies were away for the date of the usual monthly siblings feature, staying with one set of grandparents so that we could work some long hours on the new house, prepping and painting. You can read more about what we have achieved there so far in my House Renovation update.

I missed the girls masses, really don't like them being away from me even when I know they're in great hands. But the time to work on the house was much needed and appreciated, and I guess at least time apart means extra big cuddles on reunion so all is good.




So this month's Siblings photo was taken after I brought them back home on Easter Sunday. I'd set up a little hunt with rhyming clues for them before I set off early on the drive to collect them, so they loved getting straight into that when they arrived home. Since then, it's just been one huge chocolate fest (for them, not me!) and lots of chill out time. Bliss.



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Friday, 14 April 2017

House Renovation - Part 12

Here's the latest update in our home renovation saga - this video was shot nearly a week ago now though, so there have been even more changes since of course. There's one fully pink bedroom now, for starters! I won't spoil the other surprises though... 



Both girls are staying away for a couple of days with one set of lovely grandparents, which has enabled us to spend full days in the house painting and stripping and preparing and making decisions etc. Phew! Still much more to do, and now less than four weeks to do it. Yikes.

I've had to accept that we will be moving in to a building site, and whilst this won't actually bother me, of course I have concerns about how Sasha will take it. Both girls, in fact. Tamsin would love it to be perfect too - but I know she'll get over it fairly quickly. I guess I just want them both to love it and not wish we were living anywhere else... as long as we have some carpet in the bedrooms and one downstairs room (which is only looking 'possible' rather than 'definite' at the moment) then I think we'll manage.

So hang on for the bumpy ride which will be the last few weeks and look out for the next update coming soon! 





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