Tuesday, 29 May 2018

Half term moods

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!
lightning strike

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.
stephs two girls in paddling pool

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.
Stephs Two girls laughing in pool

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! 
Curtis family with Peppa Pig family

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! 
Sasha on a pineapple inflatable


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Thursday, 17 May 2018

Siblings {May 2018}

This month's siblings photos were actually taken over the bank holiday weekend, when the weather was so gorgeous that we managed to get the paddling pool out. Doesn't happen all that often in this country, so we do like to make the most of it!
stephs two girls in paddling pool

As always, I can't resist sharing the other three thousand, two hundred and eleven photos with you... OK, just kidding, not quite that many. It's always easier to get good snaps of the girls when they're having fun together in the garden though.
stephs two girls fun in sun collage
May is probably my busiest month (June is a close second!) - today our eldest turned 13. Thirteen! I can hardly believe we have a teenager already. I don't look that old do I?! Just testing now to see whether anyone reading is actually of a similar age... I can confirm that she hasn't turned into a Kevin overnight, phew.
Today's task was to create a birthday cake for her. I'm a bit out of practice on the baking and decorating front, but was pleased when Tamsin seemed happy with my efforts. I wonder if you can tell what her current interests are...?!  

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Tuesday, 15 May 2018

Positive PDA Action Day

Today is PDA Action Day; a day to talk about Pathological Demand Avoidance and to spread understanding as far and wide as possible. If you're here because you are trying to find out more about PDA, I suggest you start with my post 'What is PDA?' and then my suggestions of books on PDA for further reading. Then feel free to click on every link in this post, which I hope will take you to the most useful resources. I've also created a Facebook group (PDA Info Group - Steph's Two Girls) for anyone to join, in which I've posted many articles about PDA and even more resources - so much is available online if you know where to look and it has all helped us since diagnosis.
stephstwogirls 2011 holding hands

My blog was started as an online diary to try and help others understand our youngest daughter, who was diagnosed with autism at the age of two and a half. It was always a blog about both girls; although I knew very little about autism when we first heard the diagnosis, I always knew it would affect the whole family and sibling issues is an area which I still have much to write about (watch this space!).

Over the past couple of years I've written as much as I can specifically about PDA. My most read posts are the ones explaining what Pathological Demand Avoidance is, what PDA strategies are helpful and how PDA is different from ODD (Oppositional Defiant Disorder). I've shared many stories from other families living with PDA in my series 'Our PDA Story'. I regularly link back to the PDA Society, who are a team of volunteers who all have children with PDA, and who helped us so much in the early days when Sasha was younger.

Today's Action Day started off very positively with a feature on BBC Radio 5 Live. At lunchtime ITV will hopefully cover the peaceful march in Westminster which aims to raise awareness and highlight the need for more recognition, particularly among healthcare professionals. Anna Kennedy OBE will be speaking there, along with Sally Russell OBE, two very inspirational mums who understand the need for more action on PDA. I wanted to be there myself, but I won't bore you with the long story about why it wasn't possible (I'll save that for my Facebook page post later...). The PDA Society have produced a Call To Action for all authorities to produce more guidance on PDA.

As it is Mental Health Awareness Week, it is also important to look at how this ties in with PDA. 'Being Misunderstood' is a document showing the results of a survey of nearly 1500 PDAers, their families and professionals which was undertaken at the recent PDA Society Conference. This infographic gives an indication of some of the areas of difficulty; school plays a large part in all of this not surprisingly. 

There's a great new page on strategies which has been created for today over on the PDA Resource website; a group effort of real life practical suggestion of how to help.

There are ups and downs to living with PDA but plenty of positives too, as I wrote about recently in my post Autism and PDA positives. It may not be my most read post yet, but it's definitely one of my favourites!
Stephs two girls in pool 2018

What keeps me going through it all is, of course, these two girls. Sasha is now 10, nearly 11, and our eldest will turn 13 this week. Siblings of children with PDA have to learn how to adapt and not be dominant; our eldest girl is the most caring, understanding big sister who uses the PDA strategies without complaint (most of the time). Both girls are amazing in their own very different ways, and I hope that at some point in the future this blog could become a place for them to share their points of view too.

If you'd like to hear more about our story, you can hear me chatting with an autism specialist in a podcast over on YouTube:

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Sunday, 13 May 2018

School refusal and an autism podcast

So last week I was writing about the positives of autism and PDA, and then this week it all went a bit 'tits up' if you'll pardon my turn of phrase.
Sasha building dens in wood

The hot weather we enjoyed over the bank holiday weekend left Sasha feeling exhausted and so she didn't make it into school on the Tuesday. Instead, we played it very low key at home and had a very quick trip to the local bluebell wood for some fresh air. There, Sasha enjoyed building dens with sticks; she didn't want me with her, preferring to run around with her own imagination.

Her return to school the next day went smoothly in the morning but there were sadly a few issues during the day which led to Sasha having a few minor and one pretty major meltdown. When I collected her at the end of the day, she looked tired. I snapped this photo of her because it was so unusual to see her with her hair down - she always has it tied back in a ponytail - the bobble had come out during PE.
Sasha with her hair down

At bedtime Sasha told me in brief the events which had caused her to be so upset - and she came up with a new word about how she had felt. 'Sangry'. Sad and angry! I was delighted though, that she had been able to communicate some of the problems even if they were only in brief. This is a huge step forward for us.

The next day Sasha went back in and had a much better day; Sasha's lovely teacher called me after school and we talked through what had happened and discussed future plans. All seemed OK and I felt relieved that Sasha's behaviour had been understood and that we'd all had good discussion about it.

On Friday morning, we drove to school as usual, but when we pulled up in the car park Sasha became very tense. She refused to get out of the car and took up her old mushroom position, with her head down. We stayed like this for half an hour, interrupted with bursts of crying and a little screaming, and it became clear that there was no way Sasha would be going into school. So I returned home with her, having had to cancel my plans for that day.
Sasha head down in car

Sasha knew that once home there would be no technology; no games or YouTube, which are her favourite things to do. Despite this, she still preferred to be at home, and calmly went to her room to read when we got in. Sasha never chooses to read at home, so at least some good did come of this day! After lunch we went out to a playground for some fresh air, which felt a little weird when she should have been in school. I do wonder whether she has been a little bit under the weather with something. Sasha finds it hard to let us know when she is poorly though, I'm not sure she understand her own body enough yet.

It's so difficult trying to explain to others that what I was doing this week was for the good of Sasha's mental health. There is no point in forcing her to be somewhere she doesn't want to be; we make joint decisions and therefore she can really trust me. It wasn't that she just wanted a day off school; she was communicating to me that she really couldn't be there.

Sasha is still saying that she thinks this school is the best place for her and I'm hopeful that she will go back on Monday and we'll put some more plans in place for next Friday. School refusal is tough, but some of the stress and worry for me is actually around what others will think, which seems a little crazy as I type it. The system is set up to be one way, when clearly for some children it needs to be more flexible. Trying to make my child do something which she clearly cannot do, for whatever reason, is not going to end well. Digging to discover what is causing the issue is so important, and letting her know that we are in this together.

Now onto something new... Have you heard of podcasts? It's a fairly recent discovery for me, but I've found them to be great for when you're doing the housework or odd jobs etc - and hopefully I'll get more time to listen to some when I start going for long walks in this lovely weather we're set to have!

Recently, I was interviewed by David from @TheSensoryHour for his series of podcasts on autism, so right now you can pop across to YouTube and hear me witter on about life for us since Sasha's diagnosis! Do let me know what you think of it - have I got a posh Northern voice, or wot?!

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