Tuesday, 31 October 2017

Halloween and autism

I'm not really sure where Sasha's love for everything to do with Halloween came from. Although thinking about it, I can probably blame YouTube for most things.

Having obsessions about things or people is a common trait of PDA (Pathological Demand Avoidance), and Halloween is one of Sasha's obsessions (Pokemon, Skylanders, Nintendo and My Little Pony are the others currently). 

I can't say I'm a huge fan of it myself and I haven't encouraged it; the whole going out at dark knocking on stranger's doors asking for sweets does seem a little odd and is not something I remember doing as a child. It does seem to be a craze which is growing bigger and bigger in the UK every year now (although I think it'll take a while yet to get to the giddy heights of the antics which go on in America!).

Stephs Two Girls Halloween costumes 2016

This was Sasha last year, dressed up as a spider. She specifically requested a spider outfit and as I am not an 'Insta-craft-mom' I delegated the job of creating her costume to her Dad. He did a pretty good job, wouldn't you agree?! Eldest daughter designed and created her costume all by herself - in half the time. She's not so fussed about it, probably won't even bother dressing up this year (although there has been a large amount of practicing scary make-up happening over the past few days...).

This year, Sasha had already decided back at the start of August what she wanted to dress up as. On the one hand that was good news, as that gave me time to buy a couple of bits and pieces to keep her happy. On the other, 3 months is a long period of time over which to hear ideas about Halloween talked about to the nth degree.

Some may be surprised that this girl, who rarely participated in dress-up days at school because she found the other children and teachers too scary in costumes, can throw herself full on into the scariest dressing up event of the year. It's different though; at school dressing up was an unusual experience, seeing children who would otherwise always be in school uniform and look the same, transformed into strangers to her. Especially difficult if it involved any head gear or face painting. There was also the pressure and sensory difficulties of the extra excitement and buzz from all the other children, many of whom thoroughly enjoyed the thrill of a non-standard school day.

At Halloween though, it's expected that everyone dresses up and looks scary. Maybe that's why she can cope with it at this time. Sasha was slightly confused though, by this photo of how I used to dress up with my brothers for Halloween:

I'm carrying a lot of that extra mum guilt right about now, as what Sasha would have really, really, liked, was a Halloween party.

I asked a few people in general terms what they might be doing for Halloween back at the start of September... and no-one replied. I like to think that was down to the fact that no-one else was having to think about Halloween quite so early, and that most people tend to only make plans the week before not two months in advance.

I wasn't just being a lazy mum, not inviting people round to ours because it would be hard work. There is nothing more I would love than to hold a themed party... but there were a few reasons for holding back. I know that families often tend to stick in groups and repeat activities such as parties or trick or treating with others they've done it with since young, and if I'm honest I was scared of asking and getting no replies (you know, like one of those tumbleweed moments).

Another challenge is that Sasha's autistic and specifically PDA traits mean that her anxiety creates a need for her to be in control. If the party didn't match up to her own expectations, which can often be very detailed and vivid, then it could all get too much for her and end up in a meltdown. As a parent leading a party in your own house, it can be very difficult to ignore your own child and make it fun for all the others when you know your own child is extremely upset about something. I think there's probably a tendency for other parents to assume that a child is being a spoilt brat if they don't get things their own way, but in Sasha's case it's her inflexible thinking and inability to 'go with the flow' or adapt to what happens next if it's unexpected which can cause issues - for her and everyone else.

Then there's the other issue of being 'in limbo' at the moment. The gap between Sasha and her peers was very clear when we held a party here for her birthday this summer. Sasha was unable to join in their general conversations outside about fashion and boys, and she ended up on her own inside, feeling like an outsider at her own party. This was in no way the fault of the other children, it's just fact that they are able to converse with each other easily in a way which Sasha cannot. Sasha can be sociable and funny, but for them, I imagine that the lack of give and take in both conversation and general playing is not so much fun after a while. There's no right or wrong answer. 

We moved house earlier this year and have ended up on a road where we are unlikely to get many, if any, trick or treaters. For several years Sasha was too scared at Halloween to entertain the idea of trick or treaters, and then one year she built up enough courage to answer the door only to have some rude children make a rough grab for the sweets she was holding in a bowl. It took her a while to recover from that, but then the next year answering the door at Halloween became almost as much fun as going out. Sadly that option is now pretty much closed off to us (shame, as personally I'd rather stay indoors and warm rather than roam the streets looking like Rudolph).

So I have ended up feeling like I picked on a friend to visit for Halloween (apologies to her!) and I will venture out nervously hoping that whatever Sasha is expecting to happen does - I think that involves collecting lots of 'candies' which she won't actually want to eat anyway. When it comes to knocking on doors, most children of this age would just naturally sense whose turn it was, or at least be aware of sharing out the duty without actually talking about it, but for Sasha this is just one more challenge. When the rules are 'unspoken', she can't necessarily guess them. She understands enough to know that turn-taking is fair, but doesn't know how to work out turns if no-one is specifically organising it. She's super hyped up about the whole event so I'm guessing she won't be happy to wait at the back of a group to approach doors and I'm not sure how long the other girls will be happy to follow her lead for. So there's no standing back letting them sort it out for me; I become a 'helicopter mum' because that's the only way that I might avoid the upset and make our trip out last longer.

Sasha is very excited about our trick or treating plans and she has been wanting to get ready since she woke up this morning. Let's hope nobody spooks her too much tonight..... 

I would be so happy if you enjoy reading my blog and would consider nominating me in the BAPS blogging awards - nominations for me or any other amazing SEND blogger can be made on this page: www.myfamilyourneeds.co.uk
Full details on what BAPS are in my recent post 'What on earth are the BAPS?

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Monday, 30 October 2017

The Monday Motivation Linky #8

Time for Monday Motivation again, week 8 and I have a feeling I will never run out of ideas for this. Every week I struggle to say just one thing.

This week I'm thinking about our youngest more than ever. It's not been the easiest of half terms, but there have been some definite highlights.

All the other children are now back at school though, and Sasha is left in a limbo land, until the next decision about her life is made at the end of November. We've not discussed it much; she wants to be in a school with other children like her and she's waiting for me to tell her that's possible. There were other quotes I was going to use this week, mainly along the lines of standing alone and better to not be in a crowd of the wrong people but then I decided I wanted to be more positive. I guess if I want to put one idea in her head, it's this one.

picture of Sasha alone by a lake

'Believe in yourself, and you will be unstoppable'

This goes for our eldest daughter too. I think we need to give them both the confidence to know that they can make their own choices in life and succeed, that it's in their hands. We're just here to hold their hands along the way.

I would be so happy if you enjoy reading my blog and would consider nominating me in the BAPS blogging awards - nominations for me or any other amazing SEND blogger can be made on this page: www.myfamilyourneeds.co.uk. Full details on what BAPS are in my recent post 'What on earth are the BAPS?'

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Thursday, 26 October 2017

Half term holiday success

Today was a good day, a successful day. It was the kind of day which prompted me to say in my Instagram stories that I felt 'almost normal'.

I'm not a fan of that word to be honest, and there will be a further post about language in general, but the 'normal' word just kind of slipped out. 

Sasha and I were sitting at a table in that famous Scottish restaurant when that thought popped into my head. I actually got to drink a whole cup of tea while she chomped her way through the usual million fries. We felt like one of the crowd (it was quite busy in there), even though, or maybe because of the fact that, it's not something we get to do very often at all.
Day out with Sasha
Our exciting and successful day out in pictures

The chips are fairly frequent, I'll be honest, but it's always drive through and bring them back home to eat, never sit in the restaurant. Unless we're on holiday and it's too far to take them back to our holiday home. But we try not to book any accommodation like that. 

Anyhow, I digress. The day started off well; Tamsin had planned to go and see Despicable Me 3 at the cinema with a friend. Sasha wasn't keen on the idea of seeing that film, but when I realised the new My Little Pony film was out this half term I thought I could tempt her with that instead. She agreed, slightly hesitantly - sitting still and concentrating on a film is something she rarely does. In fact in her 10 years, she's only managed to sit through three films at the cinema - Home, Inside Out and Trolls. The latter we saw three times in a 2 week period because she loved it so much!

I booked the tickets the day before so there was no backing out (except there would have been, there always is - plans X, Y and Z are always a possibility where PDA is concerned). Older girls film started at 1030 so I could see them in safely, then our pony extravaganza would start at 1115. Perfect. Except it suddenly dawned on me that that would mean 45 minutes of hanging around for Sasha. Sasha doesn't do hanging around....

I grabbed the iPad to take with us and her current favourite other item, the ultimate guide to Pokemon. Considering she's been bending my ear about them for half an hour every bedtime for the past few days, I reckoned she'd be happy to educate me some more, even if that was back in the car. But then I suddenly remembered that I needed to get some cash out, from the cash machine in the shopping centre attached to the cinema complex. Sasha had woken up in a pretty good mood and was looking forward to the film so I decided it was worth the risk of dragging her in there to pass the time. 

Luckily, the first shop we came to was CEX, which sells pre-loved computer/console games. A quick look in there to check if they had anything she wanted (they didn't, but thankfully no upset about that) and then I was amazed as I managed to lead Sasha into three different shops selling items she had no interest in (i.e. clothes). Not only that, but despite grumpily trying to make me head back to the cinema as quickly as possible, she did allow me just enough time to speed-try on three tops in GAP, and begrudgingly admitted they looked OK and I was allowed to buy them. There had been no time for browsing of course, just the first three items I could lay my hands on, but I can't tell you how amazing the fact that I was able to shop with Sasha is!

This is turning into an epic story already... and yet it was just one day of our half-term holidays. That reminds me, Sasha hadn't even realised it was half-term until she realised Tamsin was at home during the day again on Tuesday, and she asked me why. Oops, silly me, I'd forgotten to tell her about half-term. All the days are rolling into one since she has been unable to attend school any more...

We arrived back at the cinema in plenty of time to go and find our seats, and then Sasha decided she wanted to try some popcorn. And some candy floss (or cotton candy as she calls it - American YouTube influence coming through loud and clear there!). It's such a rare occurrence for Sasha to be willing to try any new foods that I find it very difficult to say no when she asks, and so it was that ten minutes later I found myself nibbling on snacks that I don't actually like very much. And a couple of hours later I was polishing off the hamburger in McDonalds. Sasha had tried them, and not liked them. But at least she tried them. That's an achievement right there.  

The My Little Pony film ended up being a little too long, and a little too dark for too long, so we had to take some time out by going to the toilets very slowly. I wasn't at all sure that Sasha would return to watch the end of the film, but she did and was very pleased to see the happy conclusion followed by all the songs and the credits. The music is generally the best bit of any film in her eyes,and she loves to go down to the front, by the screen, to dance when the credits roll and the room has emptied a bit.

After all that came the McDonalds trip which I described at the beginning. Sasha looked at her book briefly and only hurried me up a couple of times, another achievement. We left to go and collect the older girls from where they had chosen to eat after their film, Pizza Express. As I stood at their table helping them pack away their belongings, I had my back to Sasha who was next to a table by the front door. I turned around to see that she had helpfully started to sort the colouring pens in their mixed colour pen pots into block colours , which made me chuckle. Time for a quick exit at that point, and home to relax for a while before Sasha decided to practice applying her Halloween make-up.

A fun-filled day, and such a contrast to yesterday when Sasha had been anxious and got over upset about not going out. That was mentioned briefly today, as today was a grey and rainy day, and in the car on the way to the cinema Sasha sighed and said that she felt even more guilty about not enjoying the nice weather while we had it. We didn't dwell on it, but it did reinforce for me what a difficult time she had had making that decision yesterday. Hopefully today made up for it. Tomorrow is another new day. 


I would be so happy if you enjoy reading my blog and would consider nominating me in the BAPS blogging awards - nominations for me or any other amazing SEND blogger can be made on this page: www.myfamilyourneeds.co.uk 

Full details on what BAPS are in my recent post 'What on earth are the BAPS?'

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Wednesday, 25 October 2017

When anxiety takes over

In, out, shake it all about... that's what I feel like singing today, as it's so sunny and gorgeous - bright blue skies and about 17 degrees, which is pretty unusual for this time of year! 
blue sky wispy clouds

Sadly, I'm stuck inside, again. Worse than that, I've just had to console Sasha for the last half hour as she had got herself very stressed and upset about not wanting to go outside.... which doesn't seem to make much sense. I'll try to explain.
Sasha in dentist's chair
Sasha in the dentist's chair, with Litten (her new obsession is Pokemon)

We left the house to go for a check up at the dentist for both girls this morning. That went pretty well, apart from the usual part where Sasha got too 'bored' and fidgety to stay in the room while Tamsin had her teeth cleaned, so I had to exit to the waiting room with her. We are so lucky that Sasha's teeth are growing well, and it looks like she won't need the kind of braces her older sister has. Phew. Although she's pretty good having her teeth checked and cleaned, that's mostly because the dentist is a great guy, a friend who we know and trust, who has been brilliant with Sasha from a very young age. But the whole experience is clearly a sensory nightmare for her - the smells, the taste, the noises of even the toothbrush whirring. She's not even had to have a drill yet, can't imagine how that would ever work... 
Sasha reading a book

The other bit I loved about our trip to the dentist this morning was that Sasha willingly picked up a book in the waiting room. Twice. Of course they were books aimed at younger children than her, and she could read them easily but to me it was an achievement as she so rarely takes any interest in books. 

Anyhow we'd been out, we came back, Sasha went straight back to her bedroom and put her nightie on. Again, part victory, it's only in the last month or so that Sasha has started wearing clothes in the house, so it's nice to see her dressed at least. She's always seemed to have a very high resting body temperature, and that combined with the sensory issues and not liking seams or embellishments etc, has meant that she'd prefer to be in simple undergarments. Until recently, when the penny seemed to drop that she is growing up, and girls her age don't tend to hang around with no clothes on, even in their own home. 

After lunch I quickly walked Tamsin round to a nearby friend's house and I enjoyed my quick burst of fresh air. When I got back in, I suggested to Sasha, in a very nonchalant, no pressure kind of way, that it was lovely and she might want to go outside with me somewhere. Sasha loves nature, and loves being outside - once she is out. And that's the key part really. Getting out is such a struggle for her. 

She made it clear that she had only just got changed into her nightie and that she was back to the technology, so 'not now mum'. I said it could be in a while, didn't have to be straight away, whenever she was ready but of course if she left it until after tea then the sun would have gone. Because of the PDA (Pathological Demand Avoidance), I have to do all this in the lightest, breeziest tone possible, letting her know that it is totally her choice, maybe suggesting an option or two, but not really having a serious conversation about it, especially if she's already concentrating on the technology. Because she hates to be interrupted. 

So I left the room and resigned myself to indoor activities, making a cup of tea to settle down at the computer with. At which point she appeared downstairs, angry with me and herself, talking round and round about how she doesn't want to go out because she can't decide what to do. Of course by then any extra suggestions from me were met with a vehement 'no!' and there was nothing I could do to stop the cycle of pity and anger. 

I know, you see, that a large part of her does want to be out. She loves the smell of the fresh air, she loves kicking leaves, she likes the wind. She doesn't like lots of people and busy places, and she doesn't like to travel far in the car. So we are always limited. But I try, when I can. There's a great place nearby, a bluebell wood which has a den making area in it, and that has stoked her imagination occasionally. But not today. 

Sasha returned to her bedroom, crying loudly in a way that meant she wanted to be noticed. I took a deep breath and approached with caution. It's a bit like walking the plank and hoping you'll get a reprieve, but you're not quite sure how that could happen. So anyway I sat awkwardly on her bed and my cup of tea went cold. I let her rest her head on me as she sobbed about not wanting to go out, and I reminded her that I hadn't said that she had to go. 

That wasn't the point though, she was more upset with herself than anything. I knew it was the anxiety over not wanting to go, but at the same time not wanting to miss the chance of being out. Putting pressure on herself. 

So we chatted gently, I showed her a pumpkin farm which we might go to, and it piqued her interest, but not quite enough to make her want to get dressed again today. I suggested we checked the weather forecast and possibly do it another time, and she reluctantly agreed. Thankfully, there's no rain for the next few days. Rain is guaranteed to keep Sasha at home - she is highly sensitive and can feel the first drop before anybody else. Maybe we'll get there later this week, maybe not. Who knows? As I always say, there's never a dull moment round here... 

Meanwhile, I have a million other blog posts to write... watch this space! 


I would be so happy if you enjoy reading my blog and would consider nominating me in the BAPS blogging awards - nominations for me or any other amazing SEND blogger can be made on this page: www.myfamilyourneeds.co.uk 

Full details on what BAPS are in my recent post 'What on earth are the BAPS?'

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Monday, 23 October 2017

The Monday Motivation Linky #7 - 23/10/17

The eagle eyed among you may have noticed that I missed last Monday's Motivation post... it was the start of a full-on week and I just couldn't manage to squeeze it in.

Now that week is behind me I can breathe again, and try and enjoy the half-term break with my two girls. I was extremely lucky to be able to get away from it all with two great friends last weekend, and this photo was taken in the magnificent Sagrada Familia in Barcelona. I'm sure these words will be relevant for many parents of children who face extra challenges.

'Every day is a new beginning. Take a deep breath and start again.'

There were some great posts linked up last week, and I'd like to share two in particular with you. First, a poem from Rhyming Mum about why we shouldn't always feel like failures and we should realise that others are going through struggles too. On the same kind of vein, Deb at Chaos in Kent explains why we should speak more kindly to ourselves. Definitely two posts I will keep in mind over the coming weeks!

Motivational quote new beginning

I would be so happy if you enjoy reading my blog and would consider nominating me in the BAPS blogging awards - nominations for me or any other amazing SEND blogger can be made on this page: www.myfamilyourneeds.co.uk

Full details on what BAPS are in my recent post 'What on earth are the BAPS?'

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