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Wednesday, 13 December 2017

How to help a child with PDA at Christmas

Christmas seems to be approaching faster than ever this year, and with this in mind, I thought I'd try and give some advice on how to help a child with Pathological Demand Avoidance (PDA) over this festive period.

Pathological Demand Avoidance is a type of autism. Demand Avoidance is common in most types of autism but children (and adults) with PDA are known to have an extreme level of this. There is more information about the key features of Pathological Demand Avoidance over on the PDA Society website; one of the main features is that the ordinary demands of everyday life are avoided or resisted. The festive season brings so many more demands in general, all building up to a specific point in time, which of course generates its own pressure. 

So let me offer some tips and strategies on how to make it through to the end of December, whilst saving everyone's sanity.
Sasha dressed as Christmas angel
Sasha being a Christmas angel three years ago

Let It Go

This morning, we gave Sasha her main Christmas present. Yep, you read that right, it's only the 13th December, and she's had her main gift. I can hear the sharp intakes of breath from here.

The thing is, there was really no point, nothing to be gained by making her wait until Christmas Day. We won't buy anything else in its place and have explained that to her (of course there are some other smaller gifts). She's understood, and now we just have to hope that it won't lead to disappointment on the big day itself. I honestly don't think it will though.

Sasha has a very low threshold for suspense; patience is not one of her outstanding qualities. I suspect this is true of most children with PDA, most children with autism in fact. I'm not sure it's a skill which we can teach her easily, although as she has got older her ability to wait has improved slightly. Just recently, Sasha has asked to play some board games with us, an activity that plenty of families enjoy and take for granted (when they have the time!). Sasha has never had the patience for turn-taking or the focus to follow through, so I never thought board games would be an option. We're still at the point where the games have to follow all her rules, she is allowed to cheat and she MUST win, but to actually have her sitting down playing a game with us is definitely a step forward. We do celebrate the small wins around here.

We've never given Sasha a present for Christmas this early before but then the build-up has not affected her so intensely before either. 

Sometimes, for children with autism who have specific interests which could be classed as obsessive, the thoughts take over and waiting is just too difficult. 

Look out for the signs 

The signs could be anything from withdrawal to unexpected behaviour, or from extreme upset to full on meltdown. You will know when the point of no return has been reached, and in my book it's always better to have acted before you get there.

In this case the fact that Dan TDM produced a YouTube video all about the Nintendo Super Mario Odyssey game that Sasha was waiting for didn't help us.... that video has been on repeat in our house for several days, just adding to the tension, until we finally got to a point yesterday where Sasha could think of nothing else and her mood was taking a steep downwards dive. 

The game was actually released at the end of October, so to be fair Sasha has already been waiting for it for a while. Watching how much Dan TDM was enjoying the game just reinforced her need to experience it for herself. This obsession was leading to increased frustration with everyone and everything, and there was only one thing that could solve it. Sasha didn't actually ask for the gift early, she just couldn't stop herself from almost screaming and crying and talking about it non-stop.

Ask yourself 'does it matter?'

When Sasha was younger (see photo above) I wrote this post about her Christmas show. In previous years I questioned whether there was any point in her taking part in the school shows when it clearly gave her an extra struggle. It didn't matter to me whether she was in it or not. Of course most parents enjoy seeing their child perform in a big school show, but it perhaps seems a little selfish to request that happens if it's not what your child wants or needs.

Having everyone around the table for the big turkey or nut roast dinner is a main feature of Christmas day for many people. After all the presents are opened, the meal is a part of events which everyone should enjoy. Children are forced to sit at a table and are expected to enjoy it as much as the grown ups. Of course for some lucky parents, the children do enjoy their food and are quite happy to join in with general chatter. Our eldest girl will do this for sure, without us even having to bribe her...

For Sasha though, who has oven chips, sliced turkey and cucumber for tea every single night, and who eats whilst she watches her ipad, the idea of change and sitting at a table with no electronics would just be unbearable. So why try and make her? Again, I can hear the gasps of shock... but Christmas is for me a happy time and should be a chance to relax once all the preparation has been done. Personally, I've never found having stressed and unhappy children to be relaxing. Sasha may pop in to say hello as we eat, and we'll lay a place in the hope she feels like sitting down, but there will be no pressure on her. In some previous years she has joined us, others not. We sit and enjoy our food, she makes it clear that she'd rather be eating chips from that Scottish restaurant. That's just how it goes around here!

Know your limits, and theirs

If you enjoy wrapping presents but they don't like the surprise of a wrapped gift, find someone else to wrap for. If one pile of presents all wrapped up neatly under the tree is too much tension, why not spread them out? That could mean spreading them around the house, or spreading them out daily over the month of December. Whatever works best for you and your child. Nobody is going to come and mark you down for doing it differently. In fact, there are many different ways of doing Christmas, even in the same street.

If Christmas dinner is the most important part of Christmas day for you, and you feel you won't enjoy Christmas without everyone having sat at the table together for a certain length of time, then by all means state that as your wish. There's no guarantee it will be a happy occasion of course, but only you will know if it's worth trying with your family. Be prepared to offer up some bonus for your child instead - more chocolate for pudding, longer time on technology afterwards, whatever you feel might work. 

Sometimes, it's about striking a happy bargain. Most of the time when it comes to PDA, rewards and consequences don't tend to work well, but it can help to be flexible and offer a couple of choices in a non-demanding way. Make sure they feel prepared and like they are in control, and keep anxiety and stress levels low.

I'm well aware that many will read this post and feel that we 'give in' to Sasha too easily. That we should have more control. That she shouldn't be in charge. That she should do what we want her to. My strategies will be rubbished and scoffed at by some.

For our family though, this is what works. This is far different from how I imagined parenting to be, and far different from how we can parent our eldest daughter. We use these strategies to ensure a calm family life, as we believe that's what suits both our children best. I appreciate it may not work for all; everyone has to find their own levels.

Just sometimes though, I wonder if people ever stop to think about the 'why'. Why do we place such importance on certain things happening in life? For some, Christmas is about recreating the happiness experienced in childhood, whereas for others it might be about building new ideas and leaving unhappy memories behind. Why should it happen the way that adults want it to, and not in the way which suits an individual child best? 

Of course many children are happy to be led, and will happily conform to what's expected from them, but this is rarely the case for a child with PDA who is struggling with extreme anxiety on a daily basis. Maybe, just maybe, it's OK to lose the rules and lower expectations and let them find their comfort zone so you can enjoy yours. Here's my Christmas gift to all; the permission to try it this year. Good luck!

Strategies for PDA is a post I wrote last year for everyday situations; I'd recommend using all of these over the Christmas period too.

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Tuesday, 12 December 2017

Simba mattress review

There's been a lot of change going on at our house of late, and one of these days (after Christmas) I'll get around to a new Renovation update for any nosey folk out there. In the meantime, let me tell you about the Simba Hybrid mattress which we were sent to review.
Sasha with the rolled up Simba mattress

Recently, Sasha amazingly agreed to let her bunk beds go, in favour of a larger bed to spread all her toys out on. Choosing a mattress was a somewhat tense experience, which I wrote about over on my Facebook page.

I'd thought that the more choice there was, the better, and that Sasha would enjoy trying out every mattress in a big shop. Sadly that wasn't the case; there was a bit of a meltdown in store and we came home with no clear idea about what would suit her. 
Simba mattress box

So of course we were delighted to be offered the chance to test out the Simba mattress. Below is Sasha's happy unboxing of it with her Dad: 

The mattress came rolled up in a very compact box, which seems strange when you first see it. Once the mattress is out of the box and the packaging has been opened slightly, the air allows the mattress to pop up to its intended size. It then needs to rest for 3-5 hours, and can take up to 48 hours to completely settle, but you can sleep on it before then. Just remember it's preferable to unpack it in the morning!
Simba mattress in packaging

Simba mattress once expanded

The Simba mattress has a unique combination of 2,500 patented conical pocket springs and responsive memory foam. There are actually five layers - the top one is Simbatex', a comfort layer which gives cool, gentle support, then the spring layer, the memory foam layer, a support base and a hypoallergenic sleep surface for freshness and temperature control.
Simba mattress with leaflet

As you'll see in the video, Sasha definitely found it comfortable, and after a couple of nights of laying on it with her I'd agree! I love the fact that these mattresses are designed and manufactured in the UK, and that they don't need turning, just rotating. Delivery is included and can be next day for most places if an order is made before 5pm. The two man team will take it to your room of choice and will even take away your old mattress if you request it. The customer service aspect of buying a mattress like this is exceptional - you also get advance emails and texts with information about time of delivery, which is very helpful.

Even better, these mattresses come with a 100 day sleep trial; Simba will collect the mattress and refund if it is not suiting you. I'm fairly confident you'll be happy with it though...

So when was the last time you bought a new mattress? Well, I've got some great news - if you sign up with your email via this link http://fbuy.me/hi16T you will receive a code for £50 off a new Simba Hybrid mattress! Treat yourself for the New Year maybe?!

Merry Snooze-mas (see what I did there?!) 😄

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Monday, 11 December 2017

Monday Motivation #15 - Snowflakes

Super quick post from me to bring you this week's Monday Motivation - number 15 already, time flies!

This week's chosen words are:

'We are all like a snowflake - all beautiful in our own different way.'

Instagram fans will know that we had a big snowfall here overnight on Saturday, so yesterday was an unexpected snow day and we were delighted to make it out of the house with Sasha. If you've not been following Instagram I definitely recommend you go and check out stories (the little circle at the top) - so much going on in our lives and most of it goes on there! But be quick, the videos there only stay up for 24 hours...

Sasha didn't quite manage to walk as far as our eldest (to a small hill for sledging), but she loved being out for a short time, and loved eating the snow (does anyone else do that?!).

As per my post on Facebook in the evening though, her enjoyment sadly slipped into anxiety in the afternoon - too much snow, she thought, and then worries about blizzards and snow melting to cause floods crept in. Sasha has begun to worry more generally as she gets older, and natural disasters seem to feature highly. It's a good job we don't live anywhere with extreme weather! The anxiety is no laughing matter though, and something I am keeping my eye on.

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Friday, 8 December 2017

Changing School News

Serious blogging has had to be put on hold this week as I've ushered decorators and delivery men in and out of the doors; December is such a busy time of the year for many. It's reached manic status for us in our new house though, for what we hope will be the first of many Christmases - I reckon by Christmas 2018 the house will be at least half finished....

So apologies for taking a while to share our good news on the blog - Facebook readers who were lucky enough to be shown the post (Facebook reach, blogger issue, grumble grumble) will know already that on Tuesday this week we received an email from the Local Authority stating that they believe Sasha's school of choice is the most suitable one for her after all.
Sasha holding Sylveon toy
Sasha with her latest beloved Pokemon, one of her current interests. This is Sylveon I believe!

To recap quickly, Sasha was at a mainstream primary school until June of this year, but at that point she felt strongly that it was no longer suitable for her and she was unable to attend (note: I am not using the words school refusing. There may be a further blog post on this...).

After discussions with Sasha (pretty difficult with a child who communicates in a non-typical fashion) and several meetings with professionals, we came to the conclusion that a different kind of school was where she needed to be. In our county the only option locally is an LD school - LD stands for Learning Disability. When Sasha's case was first taken to panel (an anonymous group of professionals who make decisions on which type of school children should be at), they turned down our request for the LD school because Sasha's academic levels are known to be quite high. I say known, but all anyone can do is estimate, as she is unable to take tests and focus in stressful situations.

However, everybody working with Sasha knew that mainstream was no longer a valid option and so we felt our only course of action was to take her case back to the provision panel. That happened last week and we were delighted to hear that an LD school was finally agreed upon. At that point though, there was more waiting; the next step in the process is to go to a placement panel, where 'they' decide which LD school would be suitable. So we waited nervously to hear the results of that. 

Luckily it was only a matter of days later that we were informed that our chosen school was the one they felt most suitable for Sasha, and when I told Sasha, she was over the moon. This just helped confirm that we had made the right decision for her, and so we began to celebrate.

However, celebrations were possibly a little too 'previous', as there is more to the process that we just hadn't realised at that point. Sasha's paperwork now gets passed to that school, who could apparently say they are unable to meet her needs (funny how I'm not allowed to say that myself). Even if they welcome her with open arms, it could be that all the places for children are full and she will then go on a wait list. So for now, there is no further news. 

It's been what feels like an extremely long road to get to this point, but I know that in comparison to many others we should be feeling extremely lucky right now. So many words and feelings on the whole situation and process, and you know, life in general... but I'll let you all enjoy Christmas in relative peace first before I write some serious blog posts!

Thanks for all the kind and supportive messages we've received during and since; it really does help to know that there are people out there rooting for our girl. Thanks to the PDA (Pathological Demand Avoidance), Sasha does need a little more attention and understanding than your 'average' child, and in the new year I'll be redoubling my efforts at explaining that.

For now, we'll keep our fingers crossed that her chance to attend school happens sooner rather than later - still a huge bridge to walk across of course, even when dates are set.
Stephs Two Girls blog image

I'm almost too embarrassed to put this (but I've been told I have to).... I've actually, amazingly, been nominated for a UK Blog Award 2018 (thank you kind person!). To get any further I do need people to vote for me. If you're feeling super generous, it really is a quick and easy click on the link below; you leave your name and email and select from the drop down the category to vote for me in (Health and social care + Parenting would be lovely) and that's it! Thank you so much.

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Christmas by Pines and Needles (Review)

Last week I wrote about some of my Christmas joys (have you remembered to enter the competition for a holiday?!) but this week it's time to focus on one thing that I wouldn't be without at Christmas - the tree.
Christmas tree in bay window

We've not had a real pine tree since the girls were small - think Sasha must have been very young but she can still obviously remember crawling around by the tree and hurting her hands on the prickly needles. She wasn't keen on the idea of a real tree this year, but seeing as we have now finally moved into our 'forever home', we were able to compromise and agree that the girls would get to keep their fake tree in the back room, and I would be able to have a beautiful real tree from PinesandNeedles.com in the middle of the big bay window in our front room.
branches of Nordmann Fir tree

So I went off to choose a tree locally and had it delivered that night. It's a premium non-drop tree, a Nordmann Fir, and the needles are actually much softer than even I remembered so maybe we'd had a different variant last time all those years ago.
Selection of tree decorations from pinesandneedles.com

Next came the best part... the decorating! Pines and Needles have a great range of stylish decorations for your tree and home, and their website is super easy to browse and order from. They've grouped decorations by theme - can you guess which one I went for?! 
Tree decorations from pinesandneedles.com

You can order real or artificial trees from their website - and you can even hire an artificial tree if you don't have place to store one. Pines and Needles also do lights, wreaths, tree stands and tree skirts. My top recommendation is the fake snow as I found it made such a pleasant change from all the bright tinsel we used to have. Of course, I'm not ditching that entirely, there will still be plenty of it on the girls' tree....

So what do you think of my efforts then? Stylish? Minimalist? Festive? How do you do yours? What's your favourite thing to hang on your tree? Let me know in the comments!

I couldn't resist leaving you with this sneaky photobomb by our youngest who was around to 'help' today....

**Edited to add this special offer which I've just seen online:
Exclusive offer in-store and online! Use code RUSH17 for 10% off your order plus a free mini tree. Starts 07/12/2017. Offer must end Sunday 10th December!

We were sent these decorations for our tree by Pines and Needles and asked to review them; all thoughts and opinions on them are our own.

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