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Thursday, 31 March 2016

A big home improvement...

Today I spent around six hours in our new house, stripping.

Wallpaper that is.

Sorry but I don't think that joke will ever wear thin for me!


If you've been following my House Renovation series, you'll know that we bought a house at the end of last year, but have not yet moved in. That's because we are hoping to do some building work soon to extend it, but also because it belonged to an elderly couple and everything inside was very dated. For a house tour as it was when we purchased, click on House Renovation Part 1 (but you may also have to click onto part 2... ;)).

We are hoping to move in later this year once a large part of the building works have been completed - fingers are very tightly crossed. In the meantime, there is much work to be done, and outside Mr C has already managed to craft us a new drive, which is quite impressive.

Meanwhile, I've been working hard inside. Every single wall in the existing house is covered in flocked, textured wallpaper, which was loved so much in the 70s of course. There's even a pink bathroom suite and separate toilet! It reminds me so much of the house where I grew up... but this is the 2010s and we need to bring it a 'little' more up-to-date. Scratch that, a LOT more up-to-date.


So the wallpaper needs to go. The existing walls are mostly staying luckily, but there's a few extra ones to be built - down the side and out the back, and then up into the loft, meaning a whole new roof... gulp.

All these plans are exciting of course, but sadly likely to cause more than a little dent in the bank balance (what balance?!). It could be that we will have to look for a home improvement loan as there's just so much to do - kitchen, bathrooms, sofas, paint.. etc. We're just at the stage now where we have asked a few builders to come back to us with an estimate of the costs involved, and I'll admit to biting my fingernails. So alongside all the 'fun' of choosing new flooring, and tiles, and 'colours', goes the stress of not knowing how much we'll actually have left over for the 'nice' stuff.

I'm assuming we'll be sitting on beanbags for the next five years at least.....




This is a collaborative post.
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Wednesday, 30 March 2016

The A Word Part 2: True to Life?

So I couldn't just go to bed without 'jotting down' my thoughts on part two of The A Word, the new drama being shown on BBC One following the experiences of a family after their 5 year old son is diagnosed with autism.

In my previous post Autism is the A-Word, I wrote about how the first episode brought back memories of that time six years ago when our girl was first diagnosed. I was intrigued to see how the storyline would develop this week and what issues would be covered next.

The main thrust of this episode was decisions over schooling for Joe. The mum made a seemingly rash decision that home educating would be best, whilst the dad was not at all sure that was the answer. So much so, that he went off to research a 'Special School' (all on his own - now that's impressive on one level..!). Differences in opinion can of course place a big stress on any relationship, as can tiredness and general worries over everyday troubles, such as money or agreeing on what parenting methods to use.

The education aspect of tonight's episode took me back to the early days after our girl's diagnosis. In my head, I could have been that mum standing near the playground, trying to see what or who our girl was playing with. I never actually went that far, but I wanted to. The overwhelming fear of your child being left out, or just as worryingly, left to their own devices, is ever present, and something that probably never leaves you. Children with autism are different, and of course at some stage most other children realise this - I will never forget the day a girl in Sasha's class came round and said to me quite clearly and questioningly 'but I'm too old to watch Dora now?'. She was 6 - and probably lots of 6 year olds would have felt too old to watch Dora at a time when Sasha had it on repeat. Just like lots of nine year olds would feel too old to be watching My Little Pony now. Some of them might enjoy it when they come and watch with our girl, but they probably won't admit it openly. We are lucky so far, in that Sasha doesn't yet seem to appreciate these differences... but that time is coming.

For many parents there is a need to research and learn as much as possible once a diagnosis is given. I identified with the mum staying up late or getting up early to watch videos online, and I'm betting she has a huge stack of books on autism by the side of her bed too. For some though, reading is not how they like to learn, and they just want to 'get on with it'.

The schooling issue is a huge one which I won't go into in detail here, but my post Schooling for high functioning autistic children is one of the most-read posts on my blog since I started writing, which says a lot (second only to my post about creating giant bubbles - which tells me that craft blogs are so much more successful than autism blogs!).

In a nutshell, each child is different and will probably need an individual educational approach - for some, mainstream will work with the right support, some will need a special school (although in our area these only exist if you have a moderate or severe learning difficulty, meaning achieving lower academically than peers, which our girl isn't) and others will benefit more from being educated at home.

The mum in the show isn't exactly in denial of the diagnosis I don't think; she's just scared of it. She's scared of the label, and of what other people may think, and she's scared of doing the wrong thing by her son. I'd like to say I wasn't in denial, but when I look back over my earlier posts there are times when I went round in circles (that was actually the title of an old post of mine!), especially when being told 'she's not bad enough' or 'but she just seems like all the other children'. I always agreed with the diagnosis, but I think acceptance can come on many different levels and at different times. I've learnt to grow a thick skin, but although I may say that I don't care what other people think, of course that's not true. I still want them to believe in me, to trust that I am doing the best I can, and doing what I think is best for my little girl.

Again this week I felt sorry for the sibling, the older sister. Especially at the point where both parents left her alone to get her own tea. When you have other siblings, there's always an extra layer of guilt, hoping that you are doing the right thing by them too, giving them enough quality time when your attention is fully stretched. Our sibling is amazing; she doesn't complain (much) about the attention her sister needs, or the amount of control her sister exerts in our house due to the Pathological Demand Avoidance. She knows the helpful strategies to use and she just gets her - sometimes on a better level than we do, being as she's much closer in age. They share the wonderful world of Minecraft together and that has helped our youngest de-stress massively. That's not to say it's all plain sailing; our eldest can be very embarrassed of her little sister (here's a post where I explain more about those issues) and I can't deny that hurts me. But I do understand. The sibling in this show says 'but he's Joe. He's always been Joe. Why would you want him to be any different?'. As a parent, I think the only reason you'd want your child to be different is so they can 'fit in' to society a bit more, so that things will not be so difficult for them as they grow older. It takes a while for the penny to drop that we all need to help society change so they do 'fit in'. Everyone has a place in society, and wouldn't life be boring if we were all the same?

Loved episode 2 and now I can't wait for the next installment. Great job BBC One and the cast/team behind The A Word!





Sons, Sand & Sauvignon

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Tuesday, 29 March 2016

Blogging Awards MADS and BiBs

I'm not really a big fan (understatement of the year) of writing these sorts of posts, but somebody gave me a nudge and told me I ought to. So that, coupled with the fact that so few people seem to get shown my Facebook page these days, has lead to this slightly embarrassing post....

It's a dog, eating a carrot. I was stuck in a soft play centre and desperate.
There are two different annual awards ceremonies for Bloggers: BiBs (Brilliance in Blogging!) run by BritMums, and MADS (Mums and Dads) run by Tots 100. I'm not going as far as begging for your votes but I would definitely appreciate being nominated if my blog is one you enjoy reading.

The personal recognition is one nice part of all this of course, but for me it's important to try and spread understanding and awareness of autism and PDA. Putting my blog in the spotlight would be one way of doing that, so it's an opportunity I can't ignore.

With so many other fab blogs out there it's unlikely I'd get a look in, but just in case you would like to nominate me, all you have to do is click the two links below separately. My niche blog about parenting and special needs never really fits neatly into any of the categories, so for the MADS I'd suggest maybe the Schooldays or Writer categories. You have to nominate someone as Blog of The Year before you can nominate in a different category though.. no reason why that can't be little old me too ;)

So click here:
http://www.tots100.co.uk/nominate-in-the-2016-mad-blog-awards/

or on this badge:

Tots 100 Awards

and you simply have to enter your email address (they just confirm your vote) and my blog URL which is written as http://www.stephstwogirls.co.uk/ (you can just copy and paste that!) on that first page, then click next and enter it in another category (or two!) and remember to submit. Simples.

Photo Credit Mad Blog Awards 2014 Tom Arber Photography
The BiBs nominations can be accessed via this link:
http://www.britmums.com/nomination-form-bibs-2016/

or by clicking on this badge:

BritMums

As before, my URL can be pasted in - it's http://www.stephstwogirls.co.uk/ , my blog name is Steph's Two Girls and my twitter handle is @stephc007. You scroll down to the right category - for the BiBs, I'm going to wildly suggest Reader's Choice, Inspire or Family... but as before, the choice is yours. You don't need to fill in all the boxes, such as the email, reason or favourite blog post. It's a big form but you can just leave boxes empty if you're not a blogger (or even if you are and you can't think of enough to complete it!). And again, there's nothing to say you can't put me down for both.

I would be so grateful if someone could try and let me know if the links have worked... nudge, nudge, wink, wink, will love you forever...

Nominations for the MADS close on 8th April and for the BiBs on 13th April ... best doing it now though, before you forget ;)

I would desperately love to go to the MADS Awards Dinner as a finalist this year (to get there previously I've had to dress up as a rabbit, dance in a flashmob and I've been the lovely Anne from Raisie Bay's guest) but the main bonus would be that I can have a photo taken with the lovely Dr.Ranj AGAIN and I cannot WAIT to see what he wears this year....


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Saturday, 26 March 2016

Siblings ~ March 2016

This month's Siblings pic is quite overdue, but in my defence we've been busy. So I'll keep it short and sweet:


This was the girls yesterday, at the Easter Egg Hunt being run for the amazing ADD-vance charity which I used to work at (they support families of children with autism and ADHD). We were really lucky with the weather and the girls ran round outside with lots of other children, looking for coloured egg shaped cards, which they were then able to exchange for a chocolate egg.

A fun day was had by all - we took some cakes for them to sell which Tamsin had helped me decorate that morning:



The Me and Mine Project
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Wednesday, 23 March 2016

Autism is the A-Word.

Last night a brand new programme called The A Word kicked off on BBC1. There had been plenty of publicising in advance and it felt like the whole autism community was sitting on the edge of their seats, waiting to judge.


It was a watershed moment; the first prime time mainstream drama with autism at the core of its story on a main TV channel. The series follows the experiences of the Hughes family as they discover that their five year old boy Joe has autism. It was a difficult watch for me, and for many other parents of autistic children who have been through the same process. It brought the memories of when we were at that stage (six years ago now) flooding back.

The first episode covered many familiar experiences of those at the beginning of the autism 'journey' (otherwise known as the 'rollercoaster'). Speech and language assessments, followed by hearing checks as it appears your child can't hear you, and then many more appointments where you have to repeatedly recount all your child's details and a potted history of their lives up until that point, are all common for families who have identified that their child may have needs.

One point in the programme which I particularly identified with was when the mum questioned 'what, are you saying he (she in our case) has autism?'. I knew very little about autism, certainly didn't suspect it at all, and yet when the paediatrician started talking around the difficulties, the word somehow sprang into my mouth. Questioning, both yourself and others, features strongly in the lives of those living alongside autism.

So many more issues were raised in this first episode; the difficulties around parties and the lack of invites for many children with autism was one of them. This can be just as hurtful for the parents as it is for the children; lack of inclusion anywhere always cuts deep. We have been extremely lucky when it comes to parties; partly due to Sasha tending to refuse quietly rather than explode aggressively in the classroom, and because she is generally quite sociable (a characteristic of her particular type of autism, Pathological Demand Avoidance), but also thanks to the wonderful parents of her classmates who have tried to include her. Parties have been difficult (both attending others and her own), and just like Joe in the programme, she's not a fan of having Happy Birthday sung to her. The anxiety over the build-up of attention is too much for her to bear. Still, it's nice to be asked. Many parents of children with autism aren't extended that courtesy sadly.

As the show aired, #TheAWord began trending on Twitter. Many people with connections to autism were online, waiting to give instant feedback as they watched. For me, this is where Twitter really comes into its own as opinions are squeezed into 140 characters, conversations then begin and new people to follow, often with a shared experience, are found. From what I saw, the majority of the feedback was positive.

There were two small areas of contention; the first being that the family managed to acquire a diagnosis for their son very quickly. For us, that part was fairly true to life - we referred for speech and language in July 2009, saw a speech therapist in November and were then referred on to a paediatrician who I saw in January 2010. At that first meeting with the paediatrician, autism was suggested, and it was confirmed in a follow up meeting 4 weeks later. However, I appreciate that we were very lucky (a great paediatrician) and that for the vast majority of parents of children with autism, it often takes much longer for a diagnosis to be forthcoming. Using a longer timescale would have dragged the programme out so I think it's fair that they showed an 'easy' route for the purposes of the show.

The second area where there were rumblings of discontent was around the use of terminology - should we be saying that a child (or adult) 'has autism' or that they are an 'autistic child'. This debate has the potential to get heated when people strongly believe one way or the other is best. I've written about this before, in my post for World Autism Awareness Day 2015, and in there I link to a post by one of my favourite writers, Diary of A Mom. She puts it much more eloquently than I ever could; but my choice, like hers, is to use the phrase 'Sasha is autistic'. In a nutshell, the thinking behind it is that autism is not something you catch, it's not a disease, it just describes how her brain is wired differently. As Sasha gets older and begins to understand all of this for herself, we will discuss it with her and of course I'll use whichever words she prefers. It's personal choice; I'd suggest asking whoever you are conversing with directly how they would like to be addressed.

Anna Kennedy shared her thoughts in Is the A Word realistic? and I nodded along in agreement with them all. In particular, the misconception that all autistic people have a 'special talent' - a small proportion may be exceptionally talented in areas such as art or maths, but all children are different and it doesn't help to make mass generalisations.

I'm interested to see how some other aspects of living with autism in the family will be developed as the series continues; in particular how it affects siblings, the untold stress it puts on relationships as partners with different beliefs and mindsets are challenged (what is 'normal'?), how to tell both the child and others around them about the diagnosis, and the inevitable follow-up questioning and possible diagnosis for others in the wider family (in this case the lovely Grandfather)!

My only concern is how many people will watch who don't have autism in their lives... it'd be helpful for others to have a little more understanding of the specific challenges faced by families after diagnosis. Great job done by the BBC in my opinion though, and fantastic acting, especially by the little boy.

Did you watch? What did you think? Would love to see your comments on this!


Sons, Sand & Sauvignon
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Thursday, 17 March 2016

Academies for all? Does this help our #SEND children?

I know that you sometimes have to try and take press reports with a pinch of salt, and not make snap judgements based on what you read... but I'll have to admit to being a little disturbed when I read the announcement direct from government about the 'new vision for the education system'.


Not once in this summary were Special Educational Needs and Disabilities mentioned. OK, OK, I get that it's a minority issue, but that doesn't make it any less important. Not if we're heading towards an 'inclusive' society rather than the days of yore when children with 'problems' were sent off to institutions...

Making the move to Academies is placing accountability firmly with each school - and other than moral standards, what exactly is the appeal of admitting a student with special educational needs or disability, when it's all too true that they need more support and therefore more cost allocated to them? When I first called to enquire about visiting schools in our area with a view to our autistic girl attending, several came up with excuses or reasons not to even let us over the threshold (we don't have the right resources, we don't have enough space in school, our staff are not trained well enough, we only have 3 TAs in the whole school...).

'At the heart of this vision is empowering parents to hold schools and the system to account. A new parent portal, the first of its kind, will provide information on school performance, guidance on how the school system works and information on specific aspects such as a clearer and fairer school complaints and admissions system.'

Wouldn't it be great if that parent portal gave the truth about how many Head Teachers turn away children with additional needs simply because of the extra cost burdens which would be placed upon them? Of course, that would be considered illegal and in breach of the Disability Discrimination Act - but how many parents have the money or the knowledge to fight through that legal system?

And next: 'The white paper follows the Chancellor’s budget commitment to invest in the next generation including funding for schools to increase the length of the school day, helping young people develop the skills they need to compete globally.'

Do we really believe that a longer school day is going to help my autistic child compete better globally? Should that be the focus for her?

'We have not only the best qualified workforce in history, but also a workforce that is increasingly focused on constant self-improvement, that is driven by the evidence and which like other professions is breaking new boundaries, sharing what works, challenging one another and unleashing greatness'

There seems little point in having a qualified workforce if the expectations placed upon them are causing them to leave the profession in droves. I could list many articles I've read recently from teachers who are so dissatisfied with the mess the system is in, and I can honestly say I haven't read anything supporting any of these recent Government initiatives yet.

Special School Head Jarlath O'Brien makes a great point in his article How SEND is the Achilles Heel of mass academisation - namely that special support teams are likely to become a part of history. Are teachers also going to be trained to be educational psychologists, speech and language, sensory processing disorder, and autism experts, on top of their increasingly difficult day jobs? Of course I live in hope that extra ring-fenced money will be given to each Academy to support their inclusion of SEND students....

Nicky Morgan, I am more than disappointed. These are worrying times. I'm still hoping someone out there can set me straight and tell me it will all be OK....?



Sons, Sand & Sauvignon
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Saturday, 5 March 2016

House Renovation 2016 - Part 4

Time for a little update on the house renovation front. You'd never have guessed, but there's more wallpaper stripping in this one...

Slightly more interesting than just that though, as I try and bring you up to date on where we are with the planning situation. Feeling slightly more positive about it this week than we were last, but it's not over until..... well, let's just wait and see what happens next. Amended plans have gone back in, and we're happy with them as much as we can be.



One thing we have learnt is that there's always compromises to be made. On a certain plot width, and working with an original house, your hands are always going to be a little bit tied. Knocking down and starting again seems a) to cost an extortionate amount of money and b) such a shame when you like the original house. So we're not doing that. We will of course end up with a gorgeous house anyway, so much to still be excited about.

I'll leave you with some pics of the gorgeous garden we have inherited... plenty of work to be done there too of course but it sadly can't be top of our list right now..






Life With Munchers



If you haven't read the start to this series, click on all the links below!

House Renovation Part 1

House Renovation Part 2

House Renovation Part 3
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