Friday, 30 October 2015

Halloween, sensory issues and autism

Halloween is a tricky time for many children with autism and sensory issues. I appreciate it's a tricky time for many other children too, particularly those with allergies, and there's been some great ideas around that (although I think there's still debate to be had over whether handing out purely healthy snacks is the only answer?!)...

I'll admit to being somewhat 'bah humbug' about it all this year. We used to live on a nice quiet estate with young families, where there was rarely any trouble, and it was easy to spot houses who had decorated and therefore shown they were happy to participate. We did it ourselves as you can see below:

Last year though, more people from outside the estate obviously cottoned onto how lucrative the area was in terms of sweeties and free parking. There was a marked increase in Trick-or-Treaters and our candy bowl pretty much ran dry. We were having fun though, and youngest girl was enjoying handing out candy when the doorbell rang while eldest went round the (relatively safe) streets with a friend. Youngest wasn't keen on going out herself - approaching strangers in the dark is never going to be her favourite past-time and even less so if there's a chance they are dressed up. She only likes the blue sweeties anyway, so wild and wacky candy is no treat for her.

It was going swimmingly, if a little tiring after the hundredth doorbell, when all of a sudden a larger group of children, whose parents had stood back at the end of the drive, rushed and pushed and snatched handfuls of sweets from the bowl rather than a polite one or two. Youngest girl dropped the bowl and went to hide at the back of the house for the rest of the evening, ánd I'll admit I was happy to join her.

Going out on the streets herself (with me) doesn't come into it; the question is whether to decorate our new house and answer the door or not. I have a feeling that there may be even more callers in the area where we have moved to, and I'm slightly nervous that there may be more 'tricks' played too. Still, I've bought the candy and we'll carve a pumpkin each tomorrow - not sure they'll beat last years efforts though:

We've already decorated Halloween cupcakes, because that's the funnest bit in my eyes....

It's no wonder there's confusion from our children though when we seemingly do an about turn on safety and say it's fine to go knocking on strangers' doors asking for candy. If staying in, the build-up of excitement and loud screaming of 'trick or treat!' by the door ringers can add to extreme sensory issues and tip your child over the edge. Another issue for me is that the costumes seem to be getting more creative and gory year after year; is it really a good idea to scare our children witless? Is that what fun is all about?!

I'd started writing some tips for preparing any child with difficulties for the challenges of Halloween; then I came across a great post and thought they put it much better than I could! You can read them in Parent Tips: Make It A Better Experience.

To be honest, I think media (particularly YouTubers) has hyped our youngest up so she feels like she should be celebrating Halloween, but she's not as well equipped as others to deal with the whole occasion. Before she got into bed tonight, she informed me she would definitely be having nightmares, 'because, duh, Halloween'.

What are you and yours up to? Are you a Halloween Fan, or will you be hiding out the back?!

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Thursday, 29 October 2015

Minions Movie and the BT Tower

The BT Tower is an iconic sight in London, but one I thought we'd only ever get to view from afar. How lucky we were then, to be invited to a special screening of the Minions Movie there, followed by a trip up in the super fast lift to the very top?!

BT Tower

Eldest girl assured me that she was scared of heights and there was no way she was going up.....

She was soon persuaded though, with talk of nail art, balloon models and face painting. We had some fabulous mother-daughter bonding time as the 34th floor revolved so we could see the sights (one revolution every 22 minutes, fact fans!).

The view from the top of the Tower is just stunning; London at its best. You can see the gorgeous St.Pancras station in my first pic and landmarks such as The London Eye, The Shard and The Gherkin in the second:

The Minions Movie is coming to the BT Store on 2nd November. Follow @BT_UK for updates!

Disclosure: we were treated to this viewing and entertainment but all opinions are honest and our own; we were not asked to write this post.
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Thursday, 22 October 2015

Siblings {September} and {October}

The fact I didn't get around to joining in with the Siblings linky for the past two months has been hanging over me like a dark Halloween shadow, so I finally decided I should just dump a couple of pictures of the girls from the last 2 months and run to ease my conscience.

It's rare to get one pic that looks amazing anyway, so I'm just picking a couple that will remind us what we got up to in September and October.... not that we could forget the pretty momentous house move! The above has to be the defining one for September, first month in the new place and the girls finding the new doorbell hilarious (yes, it has worn off by now).

October was quite up and down, but we did manage a fun family sports day in the garden - girls dressed appropriately for the weather as always, of course:

And also in October, a trip to our favourite place (Center Parcs), where the girls did scooting, skating, swimming and scaling the heights of the indoor climbing wall!

dear beautiful
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Animal Crossing: Happy Home Designer Review

We were asked to review the new Animal Crossing Happy Home Designer game for the Nintendo 3DS and of course we couldn't refuse (not that we tried...). Our girls have played Animal Crossing New Leaf quite happily for some time (see our post about the 2DS, which this game can also be played on) so this is a nice extension to that.

For a change, I decided our eldest should describe what the game was like, so here it is in a nutshell:

'It's a game where you are an Animal Crossing character/worker who designs houses. You progress up through job stages and get more design options as you go. Eventually you get to public work projects such as a hospital, offices and shops. The secretary from Animal Crossing New Leaf, Isabelle, helps you with the projects as she has now become the Mayor.'

The game is aimed at 7+ as there are a lot of instructions to be read and choices given in words, but nothing too complicated. There are lots of options within the game, such as picking the furniture objects and colours, but also choosing outfits:

We were also sent some Amiibo cards and were intrigued to see how they would work with Happy Home Designer. After playing the game for a while, you get the chance to unlock an Amiibo phone. You then scan an Amiibo card by simply placing it on the bottom screen of your 3DS, and the chosen character calls to discuss how they would like their house designed. You can also use the characters in public buildings projects - so they could become a teacher in the school, for example. This is a nice little twist and just adds another layer to the game overall.

Animal Crossing Happy Home Designer is available in the Nintendo e-store for £34.99, and the pack of 3 cards costs £3.49. They can also be bought at the usual other retailers.

Disclosure: we were sent these products to test but have not received payment. All views expressed here are completely our own, and we always give honest feedback for the benefit of our readers.
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Thursday, 15 October 2015

Does Every Child Really Matter?

Recently we've been doing the rounds of the local secondary schools for our eldest daughter who is currently in Year 6. Open evenings and daytime tours, all very lovely and organised and intended to give an idea of what that next step up will be like for your child.

The first event and speech was quite exciting, the second slightly less so and I'll confess to have been less than enthusiastic about the sixth trip out.

It's all too easy with regards to eldest's schooling; we live in an area where there is a choice of schools rated Outstanding by Ofsted. Of course the 'choice' comes down to how far away from the front door of each one you live, but still, they're all excellent. We are also lucky that our eldest doesn't struggle with learning; like every child, she is unique and has areas that she may need help on, but it's not difficult to pinpoint those and give her the right support.

What was really giving me a heavy heart as we looked around, was the knowledge that in two years time it is not going to be so easy for our youngest girl, diagnosed with autism. There will be no choice for her; as it stands now, there are no suitable schools locally to choose from for her.

This week, I heard the great news that the National Autistic Society (NAS) has opened the first of four purpose built specialist centres within mainstream secondary schools.

I cheered, and then sighed. These are all planned for Surrey; nothing in the plans for the county where we live. The NAS centres are exactly what we need here and it's so frustrating to see it happen just out of reach. In our county, there are mainstream or MLD/SLD schools (Moderate or Severe Learning Difficulties). This week, after viewing all the mainstream schools for our eldest, I also went to view an MLD school for our youngest. It's a brilliant school, with caring staff who are fully trained in autism, and most importantly, it has wide corridors and very few children milling or barging around in them. The children there are supported very well, and there's no rush to change classroom every hour. They don't have one of those pencil fences yet, but anything seemed possible...

Sadly, it wouldn't currently be an option for our girl for two reasons.

Firstly, the level of learning is much lower. Children aren't capable of taking GCSEs (although some of them may have been when the focus was more on coursework and less on a 2-3 hour exam under pressured conditions, thanks Mr.Gove for that). Whilst I'm not sure Sasha would ever be able to sit down and complete a GCSE exam, I do know that cognitively she would be capable, which means that lessons where she had to listen to other less able students reading aloud from a book that she'd have been able to read two years previously would quite frankly bore her rigid.

Secondly, even if we did believe that that particular school could meet her needs, we'd be likely to have a battle on our hands persuading the council to allow her to attend, as so many other parents have found. It's called going to Tribunal, and it happens regularly in our county. I'm sure lawyers specialising in SEN find this county to be their dream location. Although many parents do go down this route, there must be so many more who just don't have the knowledge or the energy to fight for what their child really deserves.

This MLD school however, is not full of children. There are places free, and there is space on site which could be used to develop something new, and special, for those children who are not 'fitting in' at mainstream. Answers on a postcard as to why the opportunity is not being seized to help more children. Hang on, I'll give you the obvious answer - cost. Yes, that's right, a child like mine is very expensive for the LA to educate. That's why so many parents are forced into home-educating, which of course costs the council nothing. It's hardly my fault, or her fault, that she needs more resource though; should we be penalised for the way she was born? Doesn't that come under Disability Discrimination?

I do think that most mainstream primary schools, with the right attitude and training, could be made to work for children with ASDs (autistic spectrum disorders). They are generally small, nurturing environments, where strategies such as visual timetables and quiet spaces should be available to help any child. Of course it depends how many autistic children you try and squeeze into any one space; we have been very lucky in our girl's yeargroup that there is not a huge amount of other need (can I say we are 'lucky' that our girl has the most need? That sounds wrong somehow!).

Secondary school is a whole different ball game. Thousands of children; six or seven forms of 30 in a year, all changing classrooms in narrow corridors as a loud bell rings. All expected to know their own way about the school; all expected to conform even when they don't want to. For our girl, it's not about wanting to or not, it's about her lack of ability to conform due to her diagnosis. Sensory issues mean her anxiety levels are already extremely high and the noise and crowding at class changeover time, and lunchtime, would cause her great distress. In class, her processing speeds are much slower, which means that although she could score highly with regards to intelligence levels, she most certainly can't do that under time pressure.

Eldest girl currently attends after school clubs in the big secondary school near our house, and a couple of times lately when we've been to  collect her, youngest girl has excitedly pronounced 'this is the school I'm going to go to when I'm bigger!'. How do I tell her that this school wouldn't want her there? That there are no facilities to help children like her? She's doesn't fully understand what would be expected of her - namely that she would need to magically develop a whole new level of independence and learn how to follow rules or be punished. Which brings me back to the PDA (Pathological Demand Avoidance) argument. Do you not think we've tried teaching about the rules thing? Would our lives not be easier if we could parent both children the same way? Sigh.

What happened to that old Government mantra, Every Child Matters? Seems to me that in terms of education around here, it's every child apart from those that are academically able but who cannot cope with mainstream schools. We're not alone in feeling there's a lack of provision for this group of children - I've spoken to many parents locally who know their child's needs are not being met. It's about time that changed. Give every child the opportunity to develop their true potential.

A photo of both our girls reaching for the stars;
shouldn't they be given the same chance to succeed?

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Tuesday, 13 October 2015

What did you expect when you were expecting?

I can hardly believe it's been almost two years since I wrote this post below... I decided it was time to dust it off before I sit down to write another update. Everything is still relevant; my friend Steph is still battling and facing more surgery for her daughter Daisy.

There is no way we can know what to expect so we just have to 'roll with it'.....


A very good friend of mine, also called Steph funnily enough, writes her blog over at Was This In The Plan?. Steph recently wrote a blog post to celebrate 5 years of blogging. She started her blog around the time that her youngest daughter, Daisy, started having intravenous nutrition (a line inserted into the main vein in her chest). Daisy is a fighter and likes to keep her Mum on her toes - luckily her Mum is a fighter too. Steph is also maybe a little bit crazy, as she loves to run and is currently attempting to win a competition for a place in the London Marathon.. each to their own, eh?! 

I thought, as I read Steph's post, that not only do we share the same name (and definitely not the love of exercise), but that we also started blogging around the same time, and both for reasons linked to Special Needs. However, I then realised maths is not my strong point and it will be 4 (not 5!) years ago in January that I started my blog as a diary to record what was happening with our youngest daughter. It was then that a diagnosis of ASD (Autistic Spectrum Disorder) was first suggested for her. Here's what she looked like then, at 2 and a half:
I found this photo and was instantly transported back - to a time when she absolutely refused to wear socks (yes, wellies without socks in the middle of winter) but when she would also insist on wearing that same summer dress day after day. For a period of at least 8 weeks, she would wear nothing else (I managed to wrestle the tracksuit bottoms on her due to the snow, just this once). I had to wash the dress stealth-style overnight to make sure she would 'function' the next day. I also remember scouring eBay for the exact same dress in a bigger size when it got to the time she was growing out of it, as life without it seemed so unbearable. Amazingly, I did find one, and that saw us through to her not needing it any more.

Time has flown by in some ways and yet it seems like the longest period of my life in others. When I looked back after getting the diagnosis, I realised that I had spent the first 2 years of her life dealing with unusual behaviour and an older toddler (our other girl) at the same time. It was very tiring.

Things didn't really get easier after the diagnosis as such; in fact as our youngest turned into a toddler herself I experienced some of the most challenging times I've known. I've always been grateful that we did get a diagnosis quickly though; it opened doors to some support for us early on and although there wasn't a huge lot of information to go with it, at least I wasn't left wondering how to explain her behaviour.

Four years on from that diagnosis and we still put an extraordinary amount of effort into every day in order to make all our lives comfortable. As parents we struggled to alter our parenting style from the 'norm' that we had found we could use with our eldest, to a parenting style which goes against every rule in the book. I don't expect everybody to agree with the way we parent our autistic girl, but I'd like to see them live here and try to manage it any other way with a positive outcome (Supernanny? Ha, she's welcome but I don't think she'd last long!). 

We are in the process of trying to get our daughter's diagnosis of Autism Spectrum Disorder added to - that is, with a more detailed 'subcategory' diagnosis of PDA (Pathological Demand Avoidance). 'Why does this matter?' I can hear you ask. To us it matters greatly, as the strategies used to reduce her anxiety and to help her manage the puzzle of daily life are actually quite different to those used for classic autism or Aspergers. I attended the fantastic PDA conference recently and it was so encouraging to be sitting in a room with over 400 people (60 parents, 340+ professional) who were all willing to learn and share understanding about this condition. More specifics on that conference to follow in future posts.

I feel like I could now class myself as a 'Warrior Mum' - a term given to those of us who have to fight every day for our children. Even writing this blog is an act of that; trying to spread awareness and understanding is so key to me. I'm heartened by the number of people I've met who are willing to learn and approach our youngest girl in that different way from the 'norm' - it's not easy, of course I know that, as I live it 24/7, but it is rewarding. I'd never have classed myself as a fighter, but it's been kind of forced upon me....

Blogging wan't something I'd heard of back then, but it has since provided me an amazing amount of love and support, from those both within the SEN community and those who are just caring individuals. Thank you all.

So what is life like now? Unpredictable. That's what I would have to give as a one word answer. We've learnt to expect the unexpected, which I know most parents of any children have to do, but this is on a different scale. I can only say that because I have one of those other 'normal' children, and I can see the difference. I have managed to get back to work - only part time, but it is for a charity that helps other families with children with autism so I'm pleased to be trying to help others. In another of life's weird twists and turns I've also recently been presenting to the local council as part of parent involvement on the new Children and Families Bill, which affects all of us Special Needs Mums greatly. Who'd have thought I'd be hobnobbing and receiving emails from a Government Minister?! That definitely wasn't in my plan.

But who really does get to follow their plan anyway? I may not have known to expect this but for now I can honestly say that we love both our girls with all our hearts and will do whatever we can to help them on their journey through this life, however complicated that may be.

I'm going to leave you with a pic of our youngest as a baby, starting where she meant to go on with not looking at the camera, and an early photo of the two girls together:

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Monday, 5 October 2015

Gino D'Acampo 'Bake With Me' Pizza Bases now available!

Did I tell you about the time I went to cook in Gino D'Acampo's house? No? Possibly one of the most surreal experiences of my life, walking down a leafy suburban street to knock on the door of a famous TV Chef and Celebrity Juice Team Captain.

Pizza and Prosecco for lunch really is the story of my ideal day. What's more, I can now recreate it at home myself, yay! Shame that I won't always have Gino with me to make it perfect, but I'll just have to live with the memories I guess.

Gino has launched a new range of chilled, ready rolled pizza bases, and we were there to test them out for him. Such a hard job, but somebody had to do it. 'We' was a group of around ten lovely bloggers who are all known for being honest, and I'm sure I spotted a bead or two of sweat on Gino's forehead as he strived to impress us (either that, or it was very hot with so many people in his lovely kitchen and all the ovens on). Sadly the heat also steamed my phone camera up as you can probably tell - not quite as damaging as the toilet water a week later, but that's a whole other story....

Seriously, these pizza bases are the best idea I've seen since sliced bread. Sadly another one that won't be doing my waistline any favours, but it may improve my sanity so I'll call that a win.

The pizza bases come ready rolled on baking paper, so you just uncurl, leave on the paper and put both straight onto a baking tray (a cold one, preferably, especially if you are creating with children). Then you spread your choice of tomata sauce on top, leaving a finger width free at the edge. If you'd like to be all Italian, you then brush some olive oil around the edges before adding your cheese - mozarella in rustic torn off pieces was the authentic style Gino showed us, but of course you can slice or grate if you prefer. It was suggested that buffalo mozarella is not the best choice though as that is likely to make the base go too moist (and nobody wants a soggy bottom, do they?).

We were given the very useful tips that most toppings should only be added for the last minute or so of cooking time (unless they are 'strong' ingredients such as peppers or pepperoni), and that all pizzas taste better with a drizzle of extra virgin olive oil on top - who am I to argue? Only 15 minutes in the oven and I can confirm that the base turns out lovely and crispy, the perfect texture.

Gino then took lunch a step further, by baking us a sweet pizza. His rectangular base can be spread with Nutella, loaded with sliced banana and then wrapped in a roll. Cut the roll into slices, lay them back out on the baking paper and pop into the oven for a totally delicious sweet treat perfect for parties or good for freezing (if you can restrain yourself).

All of the bases are preservative free and have an amazing 2 week shelf life which means that if you are slightly disorganised on the cooking front like me, you can keep them in your fridge ready to pull out at a moment's notice. They can also be frozen, and the packaging is well designed so they take up little space. I loved the fact that Gino has obviously put a lot of thought into this range; tasty and great value would be my topline review comment.

There are Thin & Crispy bases in the range which are 200g and round in shape, or the Family bases which are slightly thicker, 400g and rectangular. For super speedy (or lazy) shoppers and chefs like me, the family base also comes in a kit with its own plain tomato sauce. The range is called Gino D'Acampo Bake With Me and is available from today at Asda. We were amazed at the great price points (RRP starts from £1.50), and I can let you know that there is some pretty strong promotional pricing for the first few weeks, so you may want to stock up. Look out for additional options in the coming months too, such as brown bases.

Thanks so much to Tots for this great opportunity and thanks to Gino for a lovely lunch!

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Thursday, 1 October 2015

Super Mario Maker Nintendo Wii U Review

Nintendo have brought out another amazing game for the Wii U - Super Mario Maker. My girls played it happily for ages and have given it a huge thumbs up, so I decided to treat myself to a little play just now while they are out at school to see if I could catch up.

Nintendo Super Mario Maker

Nintendo Super Mario Maker
Create mode
It's fascinating and so simple to do; you just drag the items from the tool bar at the top of the screen and place them exactly where you want. Brick blocks, Toadstools, Question mark blocks, Venus fly trap plants; lots of game play pieces that you might find in other Mario games, in abundance. Honestly, so easy to use - if I can do it, anyone can. The Wii U GamePad and stick is used to create the course and it tickled my girls that you could watch that happening on the big screen - complete with view of hand doing the dragging!

Nintendo Super Mario Maker

We love the creativity that has already been inspired by this game and of course the children love being in control of their own destiny. below is the beginning of a course which our eldest has created:

Nintendo Super Mario Maker

An added twist is that you can save all your courses and upload them so that others on the web can try them out too. They can be given ratings so you can play the most popular, or just any random new course, which in turn could give you new ideas.

There is also the Mario 10 Challenge, which gives you 10 lives to play on pre-loaded courses, but the real highlight of this game is of course the ability to create your own course.

Amiibos can also be used for extra gameplay (but are not vital). Super Mario Maker has been such a huge hit in our house that even the cat wants to join in... it's available now, in a variety of formats from simple download via the Nintendo estore to those packs and bundles including Amiibos or the main Wii U consoles. Happy creating!

Disclosure: we were sent this product for the purpose of this review. All opinions expressed are honest and our own.
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