Tuesday, 29 May 2018

Half term moods

Stephs Two Girls May 29, 2018 autism, Autism Spectrum Condition, Half term, Pathological Demand Avoidance, PDA

May and June are always particularly quiet times for me on the blogging front. Largely because birthdays are happening (eldest in May, Sasha in June) and of course bank holidays and half-term holiday all add to the time and attention I need to be giving Sasha. So most definitely not quiet at home; I'll give you a quick run-through of what we've been up to below. The lightning storms over the past couple of days have been amazing to see; very on and off which matches our moods around here I think!

Whilst it's in part liberating to have a break from the typing, I can't help feeling 'out of it' when I'm not keeping up with the online and social media world... not sure the older generations would understand me saying that! Anyhow, I wanted to quickly drop in and do an update so any readers didn't think I'd dropped off the face of the earth. 'Out of sight, out of mind' is a phrase which springs to mind.

Today I've sadly felt it necessary to unfriend an old friend on Facebook, and that's been playing on my mind ever since. I've never been a controversial or confrontational type of person, and I guess that's reflected in my blog and what I choose to write about. I may offer my opinions, but I've said before about the way I can see both sides of most stories (some might call it 'fence-sitting'. I prefer 'balanced').

The whole MMR/anti-vaccines debate is not one I'm going to write about in great detail. Many others can cover it better than me - I have a tendency to ramble and not get my words out properly. However, I will state categorically that I do not believe vaccines cause autism. Autism is a different way of thinking; it is not something to fix or cure. We love both our girls the way they are and think they should be entitled to the same levels of respect, understanding and compassion as every other child in this world.

That's it. I did say I wasn't going to go into it too much! For now, I'm moving on with our update about life as it is - still a life with Pathological Demand Avoidance in it (you didn't think I'd miss the opportunity to get that in, did you?!), but a happy and positive life plenty of the time. Ups and downs, just like anyone else.

Last week was going well and I honestly think Sasha would have managed a full week at school but she became poorly on Wednesday eve and ended up being off on Thursday and Friday. So an extended half term for her, and me, aren't I lucky?! It was a sore throat and cold, nothing too thrilling, although I was worried at one point when Sasha brought up memories of how she was in hospital in May two years ago. Neither of us wanted that to happen again!

Sasha was also more concerned because she had planned a sleepover with two friends from her old school for Sunday night. A small pre-birthday party party, to try and get her through the tension of the build up to her actual birthday. Thankfully, although she spent most of Saturday having on and off nosebleeds (due to a rather large sneeze, I think!), she recovered enough for the sleepover to go ahead. Part of the pre-plans involved baking and decorating cupcakes for them. We ended up with 9 cakes, and she decided to decorate eight of them - four for each friend as she doesn’t eat cake herself. She cracked me up by saying that the one left ‘could be the random sad cake which hangs around for days and doesn’t get decorated’. This does actually happen frequently in our house! So she posed with one to make her point.

I'd taken great care to try and plan the party so it would live up to Sasha's expectations, but trying to educate her about keeping plans loose at the same time so the others would still have fun. There was one small wobbly moment but otherwise all went well thankfully. She also managed to come out with me and hand-deliver some invites to her old friends for the party next month, and she was super pleased when one friend was home and came out to give her a big hug. Little things can mean so much.

A couple of days when the weather has been warm the girls have laughed and giggled in the pool together. They've had fun with a giant cardboard box, they've played with the kitten, they've tried on their bridesmaid dresses for their Uncle's wedding this summer. We're not short of smiles, even when staying home.

Our eldest daughter has a friend around today and they just asked Sasha if she would like to go out and play with them on the trampoline. She was so chuffed to be asked, went and got herself dressed (which she doesn't always do... she even picked some different clothes for the occasion!) and they all trotted out together. I was hopeful of hearing some laughter but less than a minute later, Sasha trooped back in with her head hung low. There were spots of rain apparently, and she hates rain. So rain stopped play, for her. Tears of frustration spilled for Sasha and her anger was threatening to burst out. The other two carried on valiantly for a bit while I had to spend half an hour lying with Sasha to help her get over her disappointment. At times like this, it's best to say as little as possible I find, although sometimes doing that can cause anger too - you know that saying, when 'you can't do right for doing wrong'. She's still a bit down now, but at least we've got over the wave.

Watching everyone else's half-term updates on Facebook and Instagram is both lovely and a little sad, as we find it so difficult to even leave the house. I do love to see what others get up to though, I guess I'm just a nosey person! I've been in our study, making photobooks for years gone by - I try to do one for every year since the girls have been born. I just completed 2011 yesterday; knowing there's another six years to catch up on still does make me groan slightly!

It's lovely to look back at old photos though - that year we visited Peppa Pig World twice (and blogged about it). So we did have some amazing family days out and trips when Sasha was younger, and it's good to remember them. They may not have been easy or plain sailing, but we had those opportunities and I really do appreciate that.

The weather has been up and down this week and is currently feeling a bit grey and quite oppressive. Thunder and lightning is on the way again, along with some heavy rain. We happen to live right by an outdoor pool which is only open for short hours on certain days, and I'm keeping my fingers crossed that the sun pops out for 5pm so we can go and burn off a little of the fidgety-ness in the pool today. Also hoping that few other people go to it, so that Sasha can make use of this inflatable in there (it was actually a birthday present for our eldest!). Wish me luck!