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Thursday, 18 May 2017

House Renovation - Part 15 and 16

Time for the quickest, and shortest, blog post ever - the latest update in our House Renovation saga.

Actually, there's two updates. We've been so busy that I didn't actually have time to post update number fifteen on here, though my lucky Facebook page followers did get to view that...

So here goes. 

Part 15, when I was too busy to even edit the movie and add fancy bits:



Then, Part 16, recorded just yesterday. Did I say that we move in on Friday?! Eeek! Best get packing....





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Monday, 15 May 2017

PDA Awareness Day 2017 and Siblings {May 2017}

Today is *klaxon* PDA Awareness Day 2017 - PDA stands for Pathological Demand Avoidance. The new Ambassador for the PDA Society is this PanDA. Pandas are actually very intelligent, very sensitive animals, who need handling in a certain type of way in order to flourish. Sounds very like someone we know...



There's a good chance that people are becoming immune to 'Awareness Days' now, so there could be a good call for changing the name to Acceptance Day. I'm sure there are still many people who are not prepared to accept the idea of PDA... and that is why I must blog. Even though, seriously, I have no time at all right now, with a house move coming up in 5 days time, eeek (to hear more about that, you could visit my House Renovation posts?!).

So why blog if I don't have time? It's simple. Spreading the word is the main reason I started this blog, over seven years ago now. Initially it was to help those close to us understand our daughter better; as time has gone on the focus has shifted to trying to create awareness of PDA, at the same time as developing understanding. I do sadly still feel that I have to justify this, and everything else I do, but I'll gladly do that to make life easier for my girl. For both my girls, in fact.




The 15th of every month is Siblings Project day - every month for the past 3 years I've been taking a photo of our two girls together and I love the way it has turned into an ongoing photo diary for them. This month's photo was taken this weekend, over in our new house, as the girls played around and giggled together. Tamsin is an amazing sibling to her younger sister; she's had to learn the PDA strategies and use them, even when she'd rather not have to. Sometimes she understands even better than us how to placate and help Sasha - that childhood sibling bond really is strong.

So what is PDA? A little refresher, or quick and easy introduction for anyone new here, if I may.

Pathological Demand Avoidance is a type of Autism Spectrum Condition (currently known as ASD or Autism Spectrum Disorder), just as Asperger's Syndrome and classic autism are other types.

In short, the central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control.

Of course, many children avoid demands to some extent, but children with PDA avoid everyday demands to a greater extent than typically developing children. That's why it's called pathological.

As per the PDA Society, the main features of PDA are:
  • Obsessively resisting ordinary demands 
  • Appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on) 
  • Excessive mood swings, often switching suddenly 
  • Comfortable (sometimes to an extreme extent) in role play and pretending 
  • Language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up' 
  • Obsessive behaviour, often focused on people rather than things.
'People with PDA tend to have much better social communication and interaction skills than other people on the spectrum, and are consequently able to use this ability to their advantage. They still have real difficulties in these areas though, usually because they need to control the interaction.'

For lots more information about PDA, please do visit the PDA Society's webpage at www.pdasociety.org.uk. The PDA Society is a charity run by parents who all have children with PDA and they would definitely appreciate your support, whether that takes the form of reading and understanding a little more, or spreading the word by sharing their posts, or any other way you can think of offering help. They can also be found on Facebook and Twitter.

There will be a live Q&A on Facebook this evening with Julia Daunt, who is an adult with a diagnosis of PDA. She writes the blog Me, Myself and PDA. Why not log on and ask her more about what it's like to live with PDA?

Then there's Harry Thompson who has been creating videos of how life has been for him - why not subscribe to understand more? He can be found on YouTube at Pathologically Free-Spirited

There's also Riko who writes her blog PDA and More. It's great to see and hear from these adults who are able to explain how it feels to live with this condition and it gives me hope that our girl may also one day be able to express herself a bit more.

Another great place to go for information is the website called PDA Guidance which was created by Jane Sherwin, author of 'My Daughter is Not Naughty'. There are other blogs, and many Facebook groups which offer support to those living with the condition, all listed here, and the PDA Resource website which has been built and is maintained by a great guy.

If you're a Facebook fan it would be much appreciated if you could follow my blog page and share posts from there - www.facebook.com/stephstwogirls

Finally I'd like to leave you with ideas on how you can help children with PDA by using strategies which suit them. One of my most popular posts contains Strategies for PDA (I'm so creative with these post names...)

If you've enjoyed my blog now or previously, I'd be super happy to be nominated in the upcoming BritMums BiBs 2017 Blogging Awards. I did make it into the finals of the Inspire category last year and it would mean so much to me to be able to spread the word on PDA even further by finishing in that group again! Thank you if you voted for me last time.




Spectrum Sunday
Mummy Times Two

The Me and Mine Project


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Friday, 12 May 2017

Help for Depression

There's been a lot going on for us as a family over the past couple of months; our house renovation is just one part of that. I've struggled to find time for blogging and have actually really missed it. I still have no time to blog, but have been very touched by the offers of support I received from the blogging community - people who I haven't yet met 'in real life' but who I know are immensely kind and helpful.

This post below was written by a former blogger who I've followed for a long time - Looking for Blue Sky, who can still be contacted on Twitter at @Lookng4BlueSky. She is a very wise lady and I think her words will help many....




**********


I felt so low

I've read about depression, read about the black dog, read about people unable to get out of bed in the mornings, unable to function. That wasn't me. I functioned, I always have. I'm a coper. And this year life has settled down and become a little more stable. I've not been lurching from one crisis to the next, trying to firefight, to keep the show on the road. 

What happened? Well when the firefighting stopped, I began to feel overwhelmed by all the stuff that has happened over the past ten years, and how much my life has changed, how different it is from the family life that I had planned and worked so hard for. Every day became a stress-fest, and I couldn't relax or sleep without a glass of wine, I needed constant pain killers for headaches. I suspect I would've taken anything to feel better, if it had been offered. Yet I felt so guilty, I have three wonderful children (even if two of them do have disabilities), a beautiful home, enough money, and great friends. 

I went back to counselling, which is useful, and it means I can talk about stuff that I'm afraid to tell anyone else, but really it is only going to make a big difference long-term. There's a lot to get through! 

This summer could be the most challenging yet - uncertainty over future disability services for my daughter, and an autistic son who finds it so hard to tear himself away from the safety of his screens. So I was looking out the kitchen window at the patch of blue sky above the rooftops as the waves of heat washed over me and bursting into tears every time I heard trigger words like gorgeous weather, bank holiday fun, and anything that might remind me of my parents, who I still mourn every day. 

So I was miserable, and I just wanted to hibernate, but I couldn't. I have huge piles of household and disability administration to do, a home to clean and two children whose needs are many and constant. It's relentless. But last Sunday - it's always Sundays! - I realised that I was definitely not being the best mother that I could be to my kids. Friends rallied round and drove me to the GP on Monday morning. I've always been afraid of telling officialdom that I am not coping, terrified of being judged, afraid of tales of children being taken away - which could be worse for them than for me. But of course the GP was lovely - I've been put on some medication, and within an hour my pounding headache was gone, and suddenly everything seemed to be doable - even without the help of wine and chocolate! Perhaps there is a way forward after all.... 

I feel so stupid now -- clearly I should have gone to the GP months or years ago -- please don't make the same mistake as me, just because you are getting through the days does not mean that a little help won't make them better, for you and for your family.



**********



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Monday, 8 May 2017

Back to school struggles with autism

There are many children who struggle with going back to school, but those with autism tend to find it particularly difficult. Any transitions can be a challenge; many children with autism crave routine and any changes to routines can create high anxiety.
This is an old picture, but it often comes to mind as it shows Sasha at a time when she was full of anxiety, despite being in a calm place.
There are some children with Pathological Demand Avoidance who give the appearance of not needing the same level of routine; it seems as if they can 'chop and change' and make decisions for themselves about what they want to do and when. It took us a while to realise that routine is still very important for our girl; it's like a comfort blanket which she needs when her anxiety levels are at their highest.

So for that reason it doesn't come as a shock to us that she is never keen on going back to school after the longer holiday breaks. We've known for some time that she's not ecstatic about going to school every day anyway, so it's understandable that she would be unhappy at the idea of starting again after a longer break at home for the holidays.

This term, Back to School was on Tuesday for us, after an INSET day. For various reasons we'd not talked much about school over the holidays (partly because I knew subconsciously that it wasn't going to be well received) and so I left it until the afternoon before to mention to Sasha that the next day was return day.

Her demeanour changed instantly as I told her; smile wiped, shoulders hunched, quiet descended and she asked to be left alone. At bedtime, the tears came - quietly, nothing dramatic, but in a way that's worse. Sasha doesn't often show her emotions so it tends to hit home more when she does.

It was the first time that Sasha explicitly asked if I could 'home-school' her. She told me that the two weeks Easter holiday felt like just two days, and that every hour at school feels like ten weeks. In her words, she is 'not the girl for sitting inside all day', she wants 'to be outside learning'. 'Nothing at school is fun', and she doesn't want to do any more maths or literacy tests, because she is just not the sort of girl who is good at tests. There is nothing good about school. She told me that she doesn't want to go again, ever, and that she needs to be taught in a fun way.

So anyhow, I braced myself. With our imminent house move (whole other story there...), I pointed out to her that I had a lot to do during the days while she is at school (I'm decorating the house behind the builders as they finish rooms) and I talked about how I needed her to give it a go so that we could get moved successfully and then think about our school options after that.

I felt a bit guilty; I don't really have the headspace to think about the longer term future right now and I was hoping she would go along with it, although I wasn't at all confident she would. However, it seemed to work, and although she didn't exactly skip in to school the next day, she did go in and stay in, which was a small miracle in my eyes!

Then she went in the next day, and the next, always touch and go, until we got to Thursday evening, and sudden panic as we realised it was going to be a Viking dress-up day the next day. Although we'd been told about it well before Easter, many parents had forgotten, so at least I didn't feel alone.

Sasha has never been a fan of dressing up, or activity days, for several reasons. We have however had some luck in the last few years, on and off, thanks to just one piece of stretchy white fabric. This has been her Tudor, Egyptian, Greek and Viking costume - and possibly a couple of others I've forgotten! Luckily she's never been bothered much about looking the part exactly and this soft white dress has enabled her to join in easily.



The whole issue of seeing her classmates and teachers in unusual outfits can make Sasha feel very anxious. She was sure that Viking day might mean lots of scary outfits.

Thankfully, the class Whats App group came up trumps as it allowed me to ask for pictures of what the other children might be wearing. Some lovely parents sent me over photos of their children, and it helped Sasha so much to see what they would be wearing - she was reassured that there was nothing much scary at all about the costumes!

Sasha was still a little hesitant about going in that morning, but she stayed all day, and I've even since seen some fab video footage of her taking part in a pretend battle and roaring with the best of them! So glad that she managed to overcome her fears this time. Every time she tries something like this it is a huge achievement for her and I'm sure it will help her to take part in more events going forward.




“Our


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Tuesday, 2 May 2017

House Renovation - Part 14

You know, I'm really hoping that the words 'House Renovation' don't stick in my throat for the rest of my life.... can you tell things are getting a little stressful around here of late?!

So, it's M-Day minus 9 (that's Moving Day, and yes, there's only 9 days to go... eeeek!).



As you can imagine, I really haven't got any spare time to blog at all; the schedule involves full on tidying and cleaning (for those really helpful rental property viewings just to keep me on my toes) along with new house painting and ordering of new necessary items (mirrors being the latest - oh how vain are we?!), and much sorting and selling. One huge positive here - it's very satisfying finding new homes for old well loved items, especially if money changes hands. Even if you know that said money will be spent on new Skylanders to add to a collection which is already way too large and which will need a bigger room to house it.... phew.


So the photo above is a sneak preview. This bank holiday weekend we have spent plenty of time doing all of the above mentioned painting, tidying, sorting etc, and the girls have been so amazingly patient for the most part. It's a relief to have carpet in the bedrooms at least so there is somewhere for them to chill in the new house, so it feels a little more like home. I know they are excited about finally getting to move in to our new house too, but this stage seems to be taking forever and is fraught with setbacks (most of which they don't understand, thankfully).

So without further ado, I know what you'd really like to know is where we are up to with it all - and is my stress well-founded? I think you'll find the answers in my fairly short (see reasons above) video here:



Send wine! And chocolate! And a spare hanging rail or two. Maybe even a new builder, while you're at it?!


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


Life With Munchers

Home Etc

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