Wednesday, 29 November 2017

Christmas joys; what are yours?

So I don't know if you've noticed, but it's almost Christmas! I'm usually banned from mentioning it in this house until December, as Mr C's birthday is 30th November. This week though, the lovely folks at Jet2holidays sent me a hamper full of Christmas goodies so I think even Mr C is feeling festive!

It's difficult to pin down what I love most about Christmas. It could definitely be the food and drink - everything from nuts and chocolate snacks (all month long, oh yes, watch that waistline expand) to the full roast turkey dinner with sprouts, finished off with yummy Yule Log with cream. Then there's the drinks - Baileys which is never opened the rest of the year, and Bellini for breakfast on Christmas day. I'm not a fan of christmas pudding or mince pies though, does that make me odd?! 

There's so much else to love besides food and drink though. Advent calendars, decorations, present buying and wrapping (well OK, I'll admit the buying bit can give me a headache), the tree, carols, Christmas movies (Elf for the tenth time), and creating with the girls. 

Next weekend we'll be making Christmas cupcakes for the school fair, but in the meantime I'm going to give this foam Christmas scene a go with Sasha. Nearer Christmas Day we'll try and create our very own gingerbread house from this kit too:

If I had the time though, I'd jump at the opportunity to go visit a Christmas Fair in Germany. Not sure that many people know that I speak German, and that I lived in Germany for a year when I was 20. Their 'Weihnachtsmarkt' is a wonderful experience, full of festive smells, decorations to buy and delicious food and drink. Glűhwein is best drunk outdoors in a crowd of people, in my opinion.

Jet2holidays offer city breaks to many destinations and also many sunny destination options for those post-Christmas blues. This year, every day from 1st to 26th December, they are also offering the chance to win a Jet2holiday. All you have to do is answer a holiday themed question and then you'll be entered into the free prize draw. If you pop over now and pre-register, you'll get an extra entry every day! What are you waiting for?! Try now at Full terms and conditions on their site.

What I'd love to know, is what you like most about Christmas? Are you a sprout fan too?! Leave me a comment and make me smile today.....

Disclosure: this post is in collaboration with Jet2holidays, who sent me a lovely Christmas hamper with festive product in for free!

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Monday, 27 November 2017

Monday Motivation 13 - Winter Wonderland

Today marks the start of a very busy week here; a visit to Winter Wonderland wasn't originally part of the plans. Sometimes though, you just have to seize the moment!
picture of beach with text overlay seize the moment

So that's what my Monday Motivation picture is saying this week. Seize the moments, make them count. Being spontaneous is not something we get to do very often, because forward planning is generally key to any outing or event being a success - along with a number of other factors.

An INSET day off school for our eldest was a chance for us to try something as a family, and when our original plans turned out to be impossible it suddenly hit me that it might be worth attempting a visit to Winter Wonderland in Hyde Park. It has only just opened for the season, so I guessed it wouldn't be too busy yet, and although Sasha struggles with travel it would only involve one train, one tube and not a very long walk to get there.

Sasha has always loved the silly humour of Sooty and so when I saw on the website that a Sooty showwith Richard Cadell, takes place every day, I hoped that it would be worth the trip for Sasha. I knew Tamsin would love everything about Winter Wonderland; all the glitzy lights and rides and stalls.
Magical Ice Kingdom at Winter Wonderland

Watching Sasha's huge grin as she watched Sooty was priceless. After that show we had a look around the freezing cold Magical Ice Kingdom, which is amazing. Sasha then plucked up the courage to go on a swing seat ride. Sadly she didn't enjoy it and wished she hadn't, even though she used to enjoy these in the past (it's a couple of years since we've been on one).
swing seat at Winter Wonderland

By this point Sasha had obviously reached her sensory limits and wanted to head home (via that Scottish chip shop place). As I've been spending every day with Sasha since she stopped attending school, we suggested her Dad took her while I stayed and enjoyed the park longer with Tamsin. Sasha wasn't happy with this idea at first as she'd have much preferred that I went home with her or we all left together, but sometimes we do have to split to make sure things are fair for her sibling. Sasha started to get very upset; after some gentle but firm talking though, she managed to pull herself together and headed off happily back to her safe place at home. Tamsin and I stayed a while longer - we enjoyed the relaxed atmosphere and the amazing views from the observation tower!
views from Winter Wonderland

So today we seized the moment and had lots of fun - memories of this should definitely keep us motivated until Christmas. How are you feeling motivated this week? Why not link up with us below?

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Sunday, 26 November 2017

Winter Wonderland here we come!

Had such a busy weekend, sorting 'stuff' so we can finally clear a spare room again (ahem, not quite done yet, but getting there!). Feeling knackered but quietly chuffed at how much I've managed to sell and pass on to good new homes.

We sat down briefly both evenings; on Saturday Sasha joined us for half an hour on the sofa to watch TV - a bit of Ninja warrior (where she loved laughing at people falling in the water) and then she stayed for all of You've Been Framed - can you tell humour is the key for Sasha?! 

It's so rare for her to join us on the sofa and sit (not exactly quietly, but her autism and sensory issues come into play a lot and so even sitting in one place for so long is an achievement for her!) and I totally loved that time together. Just got to work a little bit more on feelings of older sibling, who doesn't appreciate the company on sofa quite so much and who is, kind of understandably, miffed at not getting full attention for herself at a time when Sasha wouldn't usually figure.... 

Tonight it was back to Sasha in a separate room, while Tamsin, her Dad and I all sat down to enjoy Michael McIntyre's big show. I can honestly say that's the most I've laughed in ages; the Gary Barlow Gary-oke was the most inspired television I've seen in ages and my sides ache now!

Feeling slightly apprehensive tonight but excited at the same time... tomorrow is an INSET day for our eldest and we had planned to go to an exhibition at the British Library all about her big interest, Harry Potter. Silly adults though, assumed you could buy tickets on the day. What was I thinking?! Anything Harry Potter-ish sells out months in advance (if anyone knows any tricks on how to get Cursed Child tickets please let me know!). Luckily I checked last night and realised our plans would need to change. 
Ice sculpture at Winter Wonderland 2016

So tomorrow, instead, we are heading into London to try out Winter Wonderland in Hyde Park as a family! Bearing in mind Sasha rarely leaves the house these days, this could be a complete disaster... but tickets are booked and we're giving it a go. 

I went along to the Winter Wonderland event last year with my blogging buddy Stephanie Nimmo and you can see in this post what happened then
Steph and Steph on ice thrones

This time around, I've booked for us to see The Sooty Show as Sasha has always chuckled loudly at this on DVD, and then the Ice Palace because that's a free flowing thing with no queue which I think both girls can enjoy. After that, I'm pretty sure that Sasha will have had enough and will want to head off and find some fries (thank God for McDonalds) whereas Tamsin will want to stay and go on the highest, fastest rollercoaster. 

So it'll end up a split day, but if we can enjoy some time as a family first it'll be a pretty rare and special occasion. Now we just have to hope that the rain stops before we get there - it's forecast to rain until 10am tomorrow, and Sasha hates rain. Then let's hope there's no queue to get in and that it's not too long waiting for the show to start. 

Fingers crossed everybody!

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Thursday, 23 November 2017

Communication via YouTube

Sometimes I wonder what other people might think about me allowing communication via YouTube. I'm talking about the leaving of comments on other people's videos, something which Sasha does fairly frequently. Bear with me as I try to explain why this feels like an achievement for us.....
Sasha watching YouTube
Even when another device is in use, YouTube is constantly on in the background here. Anyone else have this?!

Sasha's level of communication is not quite in line with that of her peers. That's a very simple way of trying to state quite a complicated state of affairs.

Sasha had delayed speech when younger, which was why we requested a speech and language assessment when she reached the age of two. After that appointment we were referred on to a paediatrician, which is when we received the diagnosis of autistic spectrum disorder (ASD, now often referred to as ASC, autistic spectrum condition).

Sasha made plenty of noise as a baby and toddler but was slow to form the sounds correctly as words. Even now, her speech is slightly unusual; that may not be obvious instantly though, as she's not keen on long conversations anyway. Her speech sounds are mostly good, though she still struggles a little with 's' and 'f'. We've had very little speech therapy along the way but that's a whole other story.

The main issues now for Sasha tend to be mainly around communication and expressing herself. I've blogged before about her lack of writing - apart from finding it hard to hold a pen, and physically write, we think she has anxieties over the words not being spelt right, and her not seeing the words on the page as she imagines them in her head. So her writing is still sporadic, although we did get an eight page story as our Christmas present last year which was amazing. This year she has decided she wants to publish her own book and has not only typed a story on a laptop at home, but has also drawn illustrations for it. Trying to explain the difficult publishing process to her is another story though (excuse the pun; funnily enough, Sasha is a big fan of those).

Sasha is not keen to enter into discussion about anything much unless it's a topic of her choosing (Skylanders, Pokemon, McDonalds or what we can plan in terms of parties/sleepovers being her favourites). 'Go away' is one of her favourite phrases, along with 'shut the door'... but this is less her being rude and more her need for peace and to be lost in her own thoughts. And her desire to concentrate on YouTube.

Ah, YouTube. Such a big part of our life. It's a form of de-stressing for Sasha; being able to have control over what she watches. There are certain clips which she will have watched hundreds of times over, and she memorises them in detail. The one I know about in most detail is when Skylander Boy and Girl go and visit the Lego Hotel in Florida. I get asked several times a week about when we can go visit that place...

It might sound strange, but because of these communication difficulties which Sasha has had, it did actually seem like an achievement to celebrate when she started interacting with YouTube by leaving comments. Here are some examples below of what she has typed independently over the past year (and possibly thinks I don't know about):

'A seaweed bangege, well ether the animators got lazy or what will they think of next'

'What I don't get is why didn't the parents and herobrine go with 'em'

'U never mentioned what it was based on. But based on the needle and the fishy tail....thing, I'd say it's a narwhal what it's based of.'

'Man, I miss the old, silly, ironic (in some episodes, he was the cause of the problems instead of solving them, I guess) and now look, he's a proper policeman. I miss the old pc plum.'

'Well it's for a long time so somehow it's kinda forever'

'fake facts,fake facts, just more fake facts'

'WTF! Watch your words, kids are gonna see that.'

More recently though I've had a couple of comments left by her on my own videos on YouTube - this one, on a review we did of Harry Potter World (a place she suddenly told us last month she was desperate to go and visit again) made my heart melt: 

'I'll never forget that day...mum, u de best'

But then a couple of other comments on different videos of mine:

'JEEZE I remember the VERY bad times. And the ten-day hospital trip'

'(Embarrassed face)' - on a video I did of our house renovation

Occasionally, other viewers reply to her comments, such as the one which read 

'no it's for seconds and then they get sent off the show you nobhead'

We've not discussed this reply to her yet, and I'm not sure she's actually reading any replies anyhow - she doesn't get the notifications like I do so I'd be surprised if she remembers and ever goes back to her comments.

A couple of weeks ago I was out with friends in a restaurant (I know, how very dare I, again?!) when all of a sudden a notification popped up that I was NOT expecting.

'Kittycat321 has uploaded a video to YouTube'

I nearly screamed out loud, almost dropped my phone down the toilet and wished fervently that the wifi signal was strong enough for me to be able to watch it instantly and take it down immediately if necessary. Luckily, I found out later that there was nothing too revealing in the video, and it was actually quite a good start at videoing her own ideas.

It's already been commented on though: 'What the helll'. Thanks for that, random commenter. Although of course there's nothing to stop my girl from putting similar words on someone else's work....

Watching this, I'm sure Sasha has abilities in terms of computing and technology which we should be able to help her to develop, although I'm fairly sure that won't happen in school. 

Just today, a new comment from Sasha has dropped into my inbox. This was written on a BBC news video titled 'I'm scared of my own autistic child':

'Well, I'm autistic and my parents aren't too tired'

Sasha's words above were actually written in response to another commenter saying that the parents in the clip must be exhausted due to challenging behaviour from their autistic child. When you look at Sasha's comment independently, it sounds like a very reasonable and fairly mature comment to make. However, because Sasha so rarely discusses anything with us, she hasn't mentioned this video at all. I'm left wondering what she really thought about the video, and what she thinks about other autistic children. However I do find it reassuring that she is identifying with being autistic (takes away the whole person first argument issue) and that she doesn't think we look too ancient and shattered!

Today, for the first time, Sasha actually called me in to show me a comment from her which she was obviously proud of having just written. Small issue in that Sasha was trying to be sarcastic in it, and as we all know, that's very difficult to get across in writing. I tried to point this out but all she wanted was some positive response from me about her comment; she wasn't ready to be critiqued.

Probably the biggest issue which many parents have worries about when it comes to YouTube is the unfiltered access to everything. Yes, I'm aware you can use apps and parental controls to only show 'safe' videos but these weren't so widely known about when Sasha was younger. That made it very difficult to introduce them later, as she was already used to accessing videos without filters. 

Sometimes the amount of swearing which can be heard in videos she watches about Minecraft is not exactly 'desirable', but I've made sure that both my girls understand that I won't stop them listening to those words in videos as long as they don't start swearing themselves. Mainly because it's not the way I was brought up so I don't swear personally and I'm not a fan of hearing children swear. That actually doesn't mean I have any issue with other adults swearing - in my mind it's all about how the words are used and in what context. I read this post 'autistic kid swears like a trucker' recently and I totally sympathised - it made me laugh out loud. 

YouTube does get a fairly bad rap a lot of the time, but I fall on the side of wanting to move with the times and learn about social media rather than cut my children off from it completely. 

What are your thoughts? Are you horrified that I let Sasha comment or do you allow your children to do the same? Is YouTube good or evil?!

*Edited on 3rd December to add in her latest comment:
'I can add on to that (this is my opinion + trap teams 'dead' now, skylanders 6/7 is what the buss is.)

Callie and Flynn cone with you, and Flynn gets captured by the magic doom radier and to protect Callie (hoping that in the end.. He can finally say it, and he does ;) ;) you know what it is) the player has to unlock the door to the crystals to get close to starite (name of the doom radier)
To do this, players must get four keys from challenges and puzzles. Two are fighting other baddies. The names are mangie (magic) and crystite (magic) starite moves for player playing (get me) he can change the puzzles to make them slightly easyier, he does a move similar to swift from Pokemon (shoot homing stars at the enemy) and he can ride a big star. Which kills pretty much anything. But all of this, in turn, the hardest boss battle perhaps of the whole game depending on how noobie you are. But anyways, he is 100% the hardest fight within the adventure packs.

Need more?...'

And edited again, when I saw this comment from Sasha on a video which had had a few comments left in Spanish:

'What? Idk what you said (p.s I'm not fully Spanish)'

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Tuesday, 21 November 2017

Insight into autism

It's been an interesting kind of day here. This morning I had some mums around for coffee, friends who have their own challenges in family life. It was nice to feel a bit less shut off from the world for a while - and it helps that this group all just 'get it'. Sasha was in a good mood and actually popped in to say hello to them. Then she insisted on helping to make the tea and coffee for them, which was a first. Think she did a pretty good job despite never having done that before! 
Ssaha in front of bright canoes on beach
A photo from one of Sasha's favourite places. I chose this one because there's so much colour in it; just like her.

In the afternoon Sasha and I went to collect one of her friends from her old class to bring her back for a playdate. This meant walking back into the old school which Sasha hasn't been attending since June. We've done it once before, and it has definitely stirred up emotions for her both times. What she finds most difficult is the thought of all the attention from the other children - she mostly hides behind me and tries not to let the other children see her, and she only responds very quietly to their 'hellos'. 

Today she did hide for a short while but then agreed to go in and see the class teacher. This is a teacher who Sasha already had back in an earlier school year and who she loved then; I know she would have been brilliant with Sasha this year so I'm kind of sad that Sasha never got the chance to be with her again. A couple of days ago Sasha actually mentioned something about school out of the blue (she rarely does) and she talked about this teacher as if she was her teacher now anyway, even though she isn't, if that makes sense. Slightly embarrassing that Sasha still felt the need to stroke the teacher's chest as she gave her a big hug today, but I guess that's what she used to do back when she was younger! 

The playdate after school went well, possibly due to the fact that the 'old' young friend is very understanding and didn't mind a bit of Minecraft and Pokemon. Sasha classed it as a 'very good' day and asked when we could do it again. I do hope I can keep some relationships going with the girls from her old class; they were all so lovely to her.

Later on in the evening, I asked Sasha about a comment she had put on a YouTube video about autism (my next blog post is going to cover that in a lot more detail), but she wasn't keen to talk about it with us. I settled down to watch the next episode of The A Word and didn't give it another thought for the next hour. If you haven't yet seen this drama, please do switch onto BBC One at 9pm on Tuesdays - I'm loving it, although of course it doesn't mirror our experiences exactly.

At bedtime, I then had what was probably the longest talk about autism with Sasha yet (all of about 5 minutes). She asked me if there were more normal or autistic brains in the world, and then asked for a specific number - I told her I'd have to google and let her know in the morning! As I've already done that, I'll share with you - in the UK, there are estimated to be around 700,000 autistic people, 1.1% of the population. That's more than 1 in every 100 people.

I tried to point out that we say 'neurotypical' rather than normal, as it's not that her brain isn't normal, but she didn't seem interested in listening to that kind of language detail. I suspect it's just another thing that will take a little while to sink in though. 

When I mentioned that my friends who came round this morning all had autistic children, she was interested in that, and wanted to know whether they had more boys or girls. That could lead the way to further discussion at some point, as of course all the research points to many girls masking their autism and many remaining undiagnosed. This morning's group had more boys than girls, but I pointed out that I do know a fair few autistic girls locally too.

What Sasha said next though, was really quite enlightening. She said that she worried for the world because she was sure the ratio would eventually go up to 100% of people being autistic. I tried to counter this with lots of examples of how autistic people have done good in the world (Bill Gates and Steve Jobs sprang to mind) and then I asked why she thought it would be a bad thing. Her reply was that it would be worse because of all the worries, because autistic people have lots of worries. She went on to mention things which are 'too much of a worry' for her, like planes, fires and natural disasters. She then went off at a tangent about forest fires before I managed to distract and calm her down for bedtime. 

This was a moment to treasure though; a real insight into how our autistic girl's brain is working. We don't get many of those, as her communication is still limited to times when she chooses to, and topics she is interested in. I'm living in hope that we get more opportunities like this to understand her over the coming years. 

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