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Wednesday, 15 November 2017

Siblings {November 2017}

Wow, can hardly believe it's November already (nearly Christmas, yay!) and as it's the middle of the month, it's time for our Siblings update.
Stephs Two Girls Siblings

Again, too many photos to choose from, so I'm including a collage at the bottom. We laughed so much doing this - the girls are pretty accepting now when I ask nicely if I can use my 'posh' camera and get them together once a month, but Sasha is still not a huge fan of doing it the sensible way. Life is for fun, remember?! 

Sasha has learned how to pose beautifully, but in the time in takes for the camera shutters to move (I think she can sense the inner workings!), she manages to pull a crazy face. Which is funny for the first, ooh, five times, and then we have to endure another 20. So this photo below is older sister trying to bribe her with some Minecraft playtime together if she will just sit and smile nicely. It usually works, eventually....
Stephs Two Girls siblings

It's been another busy month here of course, and for the first time ever, our eldest daughter took over my Facebook page to talk about what it's like for her to have an autistic sister. If you missed that, you can watch it here.

One of these days I will have to get around to doing a House Renovation update. We're getting there, slowly! Sofas on the way in the next couple of weeks, which will be interesting as one is a bright green colour. I thought teal was supposed to be blue, but apparently not, oops.

Anyhow here's the select few Siblings pics which made the final cut this month. Some are of Sasha alone as she was enjoying the silliness so much. Enjoy!
Stephs two girls siblings collage Nov 17

The Siblings Project - Dear Beautiful

If you enjoy reading my blog I would be so happy if you 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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Tuesday, 14 November 2017

The A Word - real life autism?

So last Tuesday was the first episode in Series 2 of The A Word on BBC One, and I sadly missed it because I was out having fun with some very good friends (on a school night, how very dare I?!). I managed to watch it on catch up later in the week though, and I couldn't resist sharing my thoughts on it.
beach with title The A Word

There was some controversy around this show back when the first series aired last year, and I wrote a couple of posts about it then - Autism is the A Word and True To Life?

I say controversy; what I actually mean is that some of those in the autistic community were not happy as they felt it showed only one side of autism, and an experience nothing like theirs. On the other hand, some parents could relate to parts of it and were pleased with mainstream exposure for autism in any way. Guess which group I fell into?! There are also some parents of autistic children who would find it too emotional, or who feel they are surrounded with enough autism every day and don't want to spend free time (if they have any) watching an entertainment show about it. I get that too.

If you read my previous posts, you'll see that I loved it the first time around. That's not to say I don't understand those who didn't; I know what they mean about the risk of having the general public who would otherwise know nothing about autism thinking that all autistic children are like Joe (the young autistic boy in the programme). 

However for me, the plus points of getting autism 'under people's noses' as it were, far outweigh the issues of some feeling it's not a fair representation. Although I felt like Joe was nothing like my girl (she doesn't have an obscure special interest like Joe's music, although she does have an amazing memory and could tell you lots about Skylanders or Pokemon), I could see that some of the family experiences were similar, and I was especially interested in how the sibling relationship would pan out (Joe has an older sister).

So back to my thoughts on Series two. 

It's probably no surprise that I loved it all over again! 

Joe is only slightly older now, but it instantly feels like the parents have moved on quite a lot. They are more understanding of him and seem more accepting of their situation in general.

I was gripped from the start of this episode; Sasha has never climbed on a roof like Joe did, but she had got to the point where I had to be called to school because she wouldn't return inside after playtime, or where she had locked herself in the toilets because of some misunderstanding. A lot of this boils down to a reduced ability to communicate, an area which Sasha will continue to need much learning support with, just like Joe.

In this episode, the parents reached a point where they felt the need to explain Joe's behaviour to the other parents en masse. For us it was slightly different as I'd tried to explain Sasha's diagnosis in an email to all parents of the children in her class, back at the beginning of her first year in school. We've had brilliant support from most parents ever since and I still feel lucky that Sasha remained in a class with the same peers all the way through school. Of course, that's not to say all those parents feel the same and were happy to have Sasha in their child's class... but that train of thought can take you to a place you don't really want to go. The A-Word did go there a little bit, though.

We reached the point in June this year where Sasha indicated to us that she could no longer cope with mainstream school. Joe was communicating a similar feeling, albeit it in a different way and at a younger age. So I watched with teary eyes as Joe's parents made the difficult decision that some kind of specialist provision would be more suitable for him.

He was instantly transferred to an autism base, which is a specialist unit trained in autism within a mainstream school, and I believe tonight's episode is going to follow his start at this new school and all the emotions involved with that.

This part of the show, of course, is where our story differs wildly right now. In our county (I may have mentioned before) there are NO autism bases within mainstream schools at secondary age. Our only option for Sasha is an MLD school (Moderate Learning Difficulties), also known as a Special school. Sasha's paperwork went to a provision panel (anonymous professionals who decide who can go to which school) last month, and they turned her down for this type of school on the basis that her academic ability is too high. Which it's not, but that's a whole other ranty post which could follow soon. The fact is that Sasha absolutely could not cope in a mainstream secondary school for a variety of reasons, and so we currently wait for her case to go back to the provision panel this month to request that same school, which she clearly needs.

Anyhow, back to the programme.... I loved it! Despite the experiences being different in some ways, there were so many of the emotions I could relate to. Joe's older sister returns from a trip away and her protective feelings about Joe also rang true - if you haven't seen our older daughter talk about her life with Sasha yet then you can catch up on that over on my Facebook blog page, and here's a sneak preview of my next Siblings photo, due out tomorrow!
Stephs Two Girls

The actors are all brilliant and really draw you in to a family story whilst explaining what autism can be like for some at the same time. I am honestly so grateful to the BBC for airing this programme and I'm already hoping there will be a third series. Maybe there's some scope to look in more detail at the other families whose children are in the autism unit with Joe. You never know, one of those children might even have Pathological Demand Avoidance (she says hopefully).

Watch The A-Word on BBC One at 9pm on Tuesdays.

If you enjoy reading my blog I would be so happy if you 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, 13 November 2017

Monday Motivation 11 - World Kindness Day

My turn to host this week's Monday Motivation link up and it's worked out that I can bring you this in honour of World Kindness Day today!

The above quotes are all relevant this week, and tie in nicely with the release of the film Wonder, from the book shown above. I was hooked on the book from the very first page and can't wait to see the film.

Inspirational blogger Charlie (Our Altered Life) had recently written a review of this book Wonder and so I was chuffed for her when she was able to attend a preview screening of the film with her boys. Charlie was the one who then organised a secret santa type Kindness Exchange in a group we are in, and today I'm looking forward to opening my small parcel from another blogger. I'm sure that whatever it is will put a smile on my face for the rest of the day - and knowing that I've sent a gift to make someone else happy just adds to that contented feeling!

Lovely Helen who blogs over at kiddycharts.com has recently started a new linky to share kindness experiences, with the hashtag #52KindWeeks. Wouldn't it be great if we could all add one story of kindness, whether that is something you have done or something which has been done to or for you? You don't have to be a blogger, it can simply be any kindness you've seen, either online or in the 'real world'.

Here are two examples of kindness which I'd like to share with you. A couple of weeks ago I was out in town with Sasha for some last minute Halloween 'candy' shopping (her favourite American word, even though she doesn't really eat any of it). It's actually very rare for me to head into town with Sasha, as the whole experience can be so stressful for her. The upside of not being at school though, is that at least the shops tend to be quieter on a weekday when most other children are at school!

So we were 'shopping' in a big store in town - when I say shopping, I mean I was desperately trying to browse in a hurry as she repeatedly told me that she had had enough and wanted to go home. That's typical shopping for us. Anyhow, I finally resigned myself to the fact that we'd done as much as possible for that day and we started to walk towards the door of the shop. Suddenly, a lady put her arm on mine and asked if I was Steph, from Steph's Two Girls.

Cue lots of blushing from me and this lady telling me that she reads my blog. Which was lovely, but the best bit was when she actually thanked me for writing it, because she had found it helpful. That was such a kind thing for her to do, to take the time to stop me and talk to me, and it definitely made me feel better about myself for the rest of that day. So thank you reader, whoever you are (sorry I was a bit too flustered to ask your name...).

The other act of kindness which has stuck in my mind this week is actually something which took place over a longer period of time. I was reminded of it as Sasha and I unpacked boxes of her belongings sent home from her old school recently. There were toys in there which were given to her by support assistants years ago. I think she used to talk to them when she was feeling stressed at school. She was very happy to see them again, and delighted when I told her that I would sew up the old beanbag bear so that no more beads would fall out. 

Sasha always struggled with many aspects of school, but she has had great support from understanding teachers and assistants along the way (and the school dinner lady - read my old post about her act of kindness too). I'm grateful to them all, but in particular to the fabulous TA who supported Sasha through Year 4 and 5 at the Junior school. As we unpacked the box, I came across several laminated sheets of instructions which were all designed and made specifically for Sasha, to help her know what to do at school. There were also worksheets concentrating on her special interests; this member of staff went the extra mile to support Sasha and it showed. I'm honestly not sure that Sasha would have continued attending school for quite so long if it wasn't for this dedicated person and her attitude. Thank you so much.

So now onto #TheMMLinky, which is a collection of posts intended to help motivate. Two entries which stood out from last week for me were When Life Throws You A Curve Ball from Buckets of Tea, and I'll never dance the Macarena again by Raisie Bay. Two very brave ladies who definitely have the right attitude, despite their difficult circumstances.

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If you enjoy reading my blog I would be so happy if you 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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Friday, 10 November 2017

Sofa shopping

This week it definitely felt like we achieved something; a trip to the sofa shop! 
This was after half an hour of trying out sofas. I think she'd had enough by this point...
We moved house earlier this year and are in desperate need of new sofas - we had the old one for over 15 years and it did us proud all through those baby projectile vomiting and pen scribbling years, but it is now WAY past its best before date. 

Since June, when she was last able to attend school, Sasha has been a pretty much constant shadow by my side, and this has made it difficult to get things done which need doing. Even while in the house, the attention she needs regularly stops much progress of house and blog work, but it has become somewhat of a challenge of late to tear her away from her toys and technology, and get her to agree to leave the house. 

So I'm counting this outing as a small victory. We drove (Sasha's not a fan of being in the car) to a big retail park which has sofa and furniture shops in it, oh, and a toy shop, funnily enough. 

You see I work on the premise that there has to be a reward. Working out what will do the trick is a bit of a balancing act  with Sasha; some days it might be the promise of some fries at the end of the trip, some it might be a small blind bag whereas others (like today) it can end up being a not very cheap £10 treat. I'm well aware that we can't afford for this level of reward to be expected every time we leave the house, and luckily Sasha never suggests this herself as an incentive. 

As a very young child Sasha was not materialistic at all - we could walk around a toy shop where her eldest sister would be begging for every big and small toy, whereas Sasha was perfectly happy if she could just have the Peppa Pig chocolate lolly from by the till point. To her it was mostly about the routine, not about how much money was being spent. Despite having a limited understanding of lots of things when younger, she just seemed to accept that bigger gifts were not everyday purchases. As she has got older, her interests have increased and so there is more of a reason to buy items - Pokemon, Skylanders, Shopkins and My Little Pony obsessions have all fuelled plenty of purchases. 

So if I have somewhere I want to go that I know Sasha really doesn't want to go (that could be anywhere which involves a car journey longer than ten minutes), then I try to keep her interested by dangling the proverbial carrot. It doesn't always work, and that's a key characteristic of Sasha's type of autism (PDA). If Sasha absolutely doesn't want to leave the house for whatever reason, if she's anxious about something or not feeling on top form for any reason, then even the promise of something she would really, really like doesn't make a difference. 

This time, however, it did. The promise was an LOL doll - that has been the routine a couple of times previously this year when we've been to this particular retail park. Only trouble was, the toy shop was out of stock of LOLs! Disaster. However, now Sasha is a little older, she is sometimes able to cope with disappointment a little better, and on this occasion she admirably proposed that as long as she could find something of equal value that she was happy with, it would all be OK. So it was that we gained a new Pokemon plush to bring home.
Sylveon, I believe...

There's a whole other issue linked to this - the sibling issue. It can be difficult to explain to Sasha's older sister why she hasn't been gifted a toy of such value. There is an argument for the fact that we aren't actually able to spend money on Sasha in the way we can for her older sister - I'm thinking out of school activity classes such as drama and dance, or school trips abroad etc. Of course that's difficult to justify in a tangible way for a tween and so there's some amount of careful treading to be done. As Tamsin has reached an age where pocket money is of great importance to her, but for Sasha it's still a concept which she hasn't fully grasped, that's where the point of difference lies for now.

As the sofa we need to buy will be placed in the room which Sasha uses most often, I felt it only fair that she should be involved in the purchase decision. It will be difficult for Sasha to let go of the old one, as she's so used to sitting in a certain position. Bringing in new furniture requires some thought and some advance planning to try to help her visualise and hopefully accept it. Fingers crossed we have got it right for her!

If you enjoy reading my blog I would be so happy if you 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, 9 November 2017

How does it feel to be a sibling to a girl with autism?

Back when I first started this blog, before I even wrote my first post, I was always determined that the blog would be about not just our autistic girl, but about her sibling too. That's why it was called Steph's Two Girls (true story. Also, I'm not very creative. And do you know how difficult it is to find a webpage/blog name that isn't already taken?!).

So fast forward nearly eight years since that very first post where I shared the news of an autism diagnosis for our youngest, and we come to a time when our eldest is twelve and has spent ten years living with her sister who has Pathological Demand Avoidance.

We never hid the diagnosis from Tamsin - or from Sasha, but Sasha was less able to understand it for quite some time and has only really begun to understand what it means this year. Tamsin on the other hand, has always been very aware of 'it' and has had a pretty different life at home to many other children of her own age.

Today I am introducing a short post which Tamsin has written about how life with her autistic sister has been for her. These are words directly from her; I've always been keen to try not to influence her in any way as I appreciate that her feelings about this situation are her own and not something I experienced myself as a child. She's keen to point out that some of this post she wrote around three years ago, when she considered starting her own blog... life has been busy since then, of course!


Hi, I'm Tamsin and this is my takeover. 

I have an autistic sister who has PDA (a.k.a. Pathological Demand Avoidance). Having PDA doesn't mean you are weird or different, having PDA just means that your brain works in a unique way and you have a different view on life. 

Have you ever been walking in the park and you see a child having a 'tantrum' or being just generally naughty? Sometimes you're right, or the child might have behavioural issues but sometimes it might be PDA causing them to behave like this. 

Living with someone with PDA, like my sister, is sometimes very hard and sometimes it isn't - it's fun and enjoyable.  Sometimes I think I get great opportunities that other children don't get, and sometimes I will have experiences that are difficult, which other children don't have either. 

Here are some difficult experiences I have had, recently and in the past:

I was playing Roblox with Sasha to make her happy just before I had to go out to rehearsals. Then when I told her I had to go and get ready for the show (even though I told her beforehand so that she wasn't surprised), she started getting angry. She threw a toy across the room and then she told me that I was the worst sister ever, and I got upset by that. She tells me that a lot but I still get upset each time. 
However she also tells me a lot that I'm the best sister ever, like when I told her I'd play Roblox with her, as I haven't played with her for a while.

Some of the children in her class came up to me one day and asked me what she was doing playing around in the mud. I was quite young (around 7) and I couldn't explain to them what autism and PDA were, so I just said she liked doing it. And then I realised it was true. She did like it, she liked it because of her PDA, because it calmed her down. 
Lots of things calm her down, like watching YouTube constantly while she plays Roblox or Minecraft or the Sims or while she does some drawing or playing with some toys. It's quite nice to see her relaxed but sometimes it can be annoying with YouTube always playing in the background of everything when it's quite loud. 

Here are some good things:

When we went to Florida, we had a villa which had a pool in the back garden. One morning when it was nice and warm we all got ready to go swimming. Sasha whispered (rather loudly, to me) and told me a plan to push my dad into the pool because it was still cold. I said it was a great idea and we went ahead with her idea. There were lots of giggles and my dad ended up drenched in cold water before anyone else had got into the pool. 

More recently, Sasha and I went to a park that I hadn't been to before, with one of my friends. Sasha wanted to show me around the park so I let her (my friend also has a sibling with additional needs so she understood) and then afterwards Sasha  let me go and play with my friend separately (which was very nice of her). Sasha then came back after a while and asked if we could play together, and me and my friend said yes. Overall I had a great day that day and it just shows that some days I can have great days!


Later on today Tamsin will be taking over my blog Facebook page and answering questions from anybody who is watching. We've already got some lined up, such as 'what is the best thing and the worst thing about having a sister with autism?' and 'what have you learnt from your sister with PDA, and what can she learn from you?'. More questions would be great, or just general comments and shares of similar situations to know she's not alone - please do pop along to www.facebook.com/stephstwogirls at 7pm and show her some support if you can.

If you enjoy reading my blog I would be so happy if you 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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