Monday, 26 January 2015

52 Week Photography Challenge Week 4: Light.

So here's a surprise... I'm already behind with the 52 week photography project and I've actually missed a week! I did start off a little late with the whole project though, so it was always on the cards.

If I'm honest, I struggled a little with last week's challenge - Simplicity. Every time I went to photograph something, such as my lovely Poinsettia plant which lost all its green leaves so only has the beautiful red, I couldn't see simplicity, I just looked at the great detail - veins on the leaves. Everything I tried to snap led to more thoughts for me! Anyhow I did have one picture which I wanted to use for Simplicity in the end - it's below and I won't talk about it so it stays simple...

Week 4's word is Light.

I knew I'd find this easier; light is all around us of course! So this morning, whilst sitting at my desk and realising suddenly that I still had the blinds closed at 10am, I opened them then popped my head out of the front door and snapped this:

I think it's quite a spooky looking pic, and you might think it was taken later in the day but it was definitely 10am. I've always loved bare trees with hundreds of branches in winter and it feels to me like they are holding the sun up; if I was to do this shot again I'd probably take more time to try and get the roofs out of the way!

I love that Mummy B's challenges are making me pick up my fab new camera, which is a Nikon D3200 as recommended by many. One of these days (months I suspect) I will learn how to use the settings to create amazing photos I hope!

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Sunday, 25 January 2015

Team Honk Red Nose Day Danceathon

Every once in a while, I sign myself up for something without really thinking it through. 

Spontaneous, I like to call it. Others might say crazy.

Me, front centre stage, shaking my stuff as part of a secret flashmob

Have you heard of the fabulous Team Honk? Last year they raised over £30k for Comic Relief by doing a bloggers' relay from Lands End to John O'Groats, and I was very proud to have been a part of that. So when I saw that they were arranging a new challenge for bloggers as part of Red Nose Day, I jumped straight in, feet first. 

Dancing, at Wembley? Well, I'd already learnt a whole flashmob dance routine last year, so I figured that a 6 hour Danceathon would be right up my street. 

What, wait, what??! 6 hours? SIX hours? That was the small, but important information my eyes must have skipped over when I recklessly signed up to this event. 

So I had a little wobble, and wondered whether I could do it, and then figured I'd never find out unless I gave it a go. However, there's the small matter of raising some sponsorship money first.... I don't think I'm going to start any dance training until I see some decent £££ in my total, so please, please help me build up to this fab event properly by popping over to my sponsorship page and donating any amount you can, and I will be forever grateful:

Betfair have already pledged to help kickstart my fundraising, which is very kind of them, but every little extra still helps massively!

As always with Comic Relief, the money donated is spent on a huge variety of causes both at home in the UK and in Africa, so you could be helping children get to school, or people with Alzheimers receive much needed support, or providing funds for a new medical centre to be set up.

You can read more about what is actually going to happen over on the official Red Nose Day page, but I can tell you that on Sunday 8th March there will be 2000 dancers in the Arena (500 of them Team Honk Bloggers), 6 hours and 12 different dancing styles which will change every 30 minutes (I feel tired already). The lovely Claudia Winkleman will be motivating us all from the stage, along with various other celebrities and dance instructors. Even better than that, it will all be live streamed to a Sky channel - yikes, I hope they don't do any close-ups!

So if you feel like dusting off your dancing shoes and joining us (you don't even have to be a blogger!), pop along to Team Honk's page ( to find out where to sign up.

If you see any tweets or Facebook posts with the hashtag #RNDDanceathon, please do retweet and share to help @Team_Honk smash their fundraising target.

And just to prove I've not lost it (the ability to remember the flashmob dance steps, that is), please do have a little laugh at this (routine kindly choreographed by Stagecoach and Tots 100):

Sponsor me for the Dancethon!

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Wednesday, 21 January 2015

This is our PDA Story (week 1)

As suggested in my 5 year Blogiversary post, where I mentioned Challenging Behaviour, I'd like to share with you on a regular basis the words of other parents or adults living with PDA (Pathological Demand Avoidance). 

This week is the first time I am handing my blog over to another parent who has been, or who is going through, similar challenges to us. In trying to spread awareness, which I hope will lead to acceptance, I think it's important for readers to know that it's not just us experiencing these challenges. I also hope that some others out there who are experiencing difficulties with children might also experience their 'lightbulb' moment and come to understand what is needed to lower stress levels.

So these are the words of another Mum, telling her story of PDA. I know she would really appreciate it if you were able to take the time to leave her a comment on this post, even if just to say 'I've read this', or 'thanks for sharing'.

My friend gave me a diary as a present I guess about a year ago.  To my shame I've still not written on its lovely pale blue, gilt edged pages. I've always loved keeping a diary; ever since I was a young girl.  Yet this beauty sits blank, waiting.

The reason I neglected the opportunity to record events in the diary? It wasn't simply down to the life of a busy working mum, trying to keep a career that I'd worked hard for (and loved).  Attempting, often in vain, to make all the different elements of family life fit into some sort of workable routine. It wasn't the days when I was meeting myself coming back, dashing from one child's activity to another. The lapse in diary writing wasn't down to choosing instead those odd few nights when my hubby and I could sit down and say 'hi' after days as ships in the night.  The truth is that if I really wanted to record the events of my days I would. And in all honesty I didn't.  The diary had a little quirk to it; a five year diary where the shimmering shiny pages invite the owner to write a couple of lines a day over five years. I guess the fun lay in reading back over those days in years to come, comparing the 23rd of September say for five years. But why would I want to record the daily horror of mine and my family's existence?

I choose 'existence' instead of 'life' deliberately. We live day to day in survival mode. Each day I wake with a knot in my stomach as I hold my breath and anticipate the mood of my 11 year old son.  Perhaps 'mood' isn't the right word as it suggests a stubborn, pre-teenesque choice of behaviours but 'mood' is the easiest way to convey the overriding pattern that dictates the start of our days, indeed every minute of our days.

My son is Autistic and displays many of the features of PDA. I doubt that will ever be written into his diagnosis as, despite the fact that my family (and hundreds of others) live with PDA daily, it apparently doesn't exist. That is if you consult the diagnostic criteria.  Every day I find myself marvelling at how a condition that my son lives with and attempts to conquer, can be deemed not to exist.

Living every day with PDA for my son means attempting to, in his words 'be normal'.  In fact he expends so much energy everyday trying to 'be normal' that often when he arrives home he will simply explode. At home we have spent the last two years, since PDA was first suggested to us, on the steepest learning curve ever.  We have learnt to see his meltdowns as panic attacks, often the result of total sensory overload. So now we soothe and calm and treat his panic attacks as just that. We look to calm him and help him find the best ways to either prevent a panic attack or if that's not possible, and sometimes with the best forward planning in the world, it isn't and a panic attack is inevitable, we aim to keep everyone safe and allow the panic attack to pass.

Before PDA was mentioned to us we'd been on every parenting course offered and a fair few we'd paid for ourselves, too!  (Crikey if I could spend that money again, it wouldn't be on a traditional parenting course!) We'd return home after each session intent that this or that new technique would work, would make family life calm again and would help our beloved little boy to be happy. That was probably the hardest part of the last few years, seeing the intense sadness that T experienced. We would sit confused, deflated and depressed as, despite our best efforts to apply our new parenting skills, we'd find ourselves dealing with, what we presumed was, bad behaviour.  But something niggled and ate away at me during those parenting sessions, why didn't our younger daughter show similar behaviours if our parenting was out of kilter? Why didn't T respond to any of these strategies? Why was he like a mini Jekyll and Hyde? But with no solid answer we ploughed on. I'd danced around the idea of autism since T was 18 months but as he was excelling at school and the worrisome behaviours were only witnessed at home then every attempt for help was met with, you've guessed it: a parenting course.

Ironically the most difficult time for T and us has been all of our salvation. At the beginning of year 5 the same behaviours we'd witnessed and tried to deal with at home for years flooded into school. T went, in a matter of weeks, from being a boy with lots of friends, top of the class, sports captain to 'the naughtiest boy in the school'. He struggled to deal with the everyday demands of the classroom, found himself in scuffle after scuffle, swiftly moved to the edge of his friendship groups and crumpled as his once-friends continued with their friendships whilst he became more and more isolated. He simply couldn't cope. Those mechanisms which he'd employed for years at school simply didn't work anymore. Why it happened when it did I doubt we'll ever know but it was horrendous for T. Suddenly he was looking at exclusions, internal seclusion, loss of play times, removal from sports teams. His world was collapsing but finally someone else saw and listened to us.  Although the school were, by their own admission, shocked and at a loss, they had the sense to contact the right services and organisations to begin a process of referral and diagnosis.  Ultimately they wanted to keep him at school, with them and, most importantly, to help. Looking back now it seems as though events were destined to grow worse before they could begin to improve. His panic attacks become so much worse at home. He appeared locked in a vicious circle of sadness, fear, violent outburst, shame, guilt and sadness. So much so that every day was horrendous. We struggled to get him out of the house to go to school, he quit every sporting team which he was involved in, any activity which meant leaving the house usually meant carrying T to the car kicking and screaming. He simply wanted to hide away and forget that the world existed.

It was CAMHs who first suggested PDA to us. As many parents in our position will say, we'd never heard of it. So, we turned to the same place everyone else does when they're in the dark: Google. As we learned more we felt our own sense of being overwhelmed - the descriptions of other children fitted T so clearly, that soon the overwhelming panic gave way to relief. The label isn't important but with it comes an understanding and from that understanding strategies to cope. To move from survival mode to living.

And so we've come to see his meltdowns as panic attacks. I felt so stupid not to have viewed his distress as that previously. Knowing what I know now how could I ever have thought that he would choose this? If he could, for one second change the way his brain works and how it compels him to resist the demands of every day life, I know he would.  And when he does try hard to buck against those compulsions he feels so strongly then ultimately he pays the price and sensory overload kicks in.

We are all just at the beginning of a journey really and we aren't sure where we'll all end up but at least we have a little company along the way. Finding groups of parents who experience similar with their children has undoubtedly played a huge part in the tiny steps we are taking. Someone used the phrase 'hidden disability' at a Core group meeting recently and that couldn't describe our boy more clearly. If you were lucky enough to meet T you'd be greeted with a pleasant, polite, kind, caring, thoughtful, witty intelligent young man. And incredibly handsome to boot! Given all that you'd be forgiven for thinking hubby and I were way off the mark; totally wrong.  But once T knows a person, feels safe and secure and builds up trust he can then 'be himself' and stop trying to 'be normal'. Ironically it's at that point that people stare incredulously and peers flee.

And what about that diary? Well we've had more good days than bad of late, but the scars are deep and every wobble opens them up leaving me sick to my stomach, terrified of what might happen next. I can't open that diary just yet. I know I will, just not right now.

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Tuesday, 20 January 2015

Who's in charge of the money?

So last night Sasha came in to me, having been woken up with nightmares. It reminded me of what she had said the last time we talked about nightmares - 'it was so dreamy it terrified me up!' were her exact words.

At our last annual review of Sasha's Statement of Special Needs (ie the document which confirms what support she should be getting), Speech and Language Therapy basically walked away saying Sasha needed no support from them.

I'd disagree, based on the type of language she uses and her pronunciation which is not clear. Sasha has a hidden disability (autism) but is more noticeable because of her speech. What would you say? Should she have support?

Sasha's speech has never been on the same level as her peers; it was the most notable factor in her receiving a diagnosis in the first place. Speech and Language have been loosely involved with Sasha from that point up until a year ago. I use the term 'loosely' to show what my thoughts on what the service has been. Sasha was seen at most once every half term during school term (so obviously holidays were not covered) and for the most part, that involved an observation of Sasha, followed by feedback to the overworked teaching staff who were tasked with carrying out the speech therapy.

Whilst I agree that the training of school staff and the ongoing use of correct terms and ideas to try and improve Sasha's speech was good practice, I can't help feeling that more intensive time blocks of therapy would have helped Sasha improve. We are currently having weekly sessions of OT (Occupational Therapy) for Sasha, and we see the improvements there already.

It's true that Sasha can make herself understood a lot of the time now (unless she is really upset), but her speech still sets her apart as being different. As she grows older, do we want to maintain that it's alright to be different (of course it is, or at least it should be) or do we want to do everything in our power to help her 'blend in'? The main advantage of the latter would be less bullying I suspect, although to be fair she also needs the support to help her behaviour blend in...

Based on the SALT's (Speech and Language Therapist) decision that therapy is not necessary, against ours that it is, it looks like we would have to pay privately to get Sasha this Speech and Language help. Is that fair? 

As a parent of a child with Special Needs, it is so frustrating that it all boils down to money. A lack of, in particular, but the poor mis-management of money also plays a huge part in the problems. Accountability is key, and with the new processes being put in place to improve situations for those with SEND (Special Educational Needs and Disabilities), I really hope there are enough (not extravagantly paid) people put in place to delve behind the screens and ensure that the money is put to best use where it is really needed. 
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Saturday, 17 January 2015

52 Week Photography Challenge Week 2: Cold

I knew there was a reason I'd be writing this post a little late. 

It wasn't that I wasn't inspired by the theme exactly, it's just that I was determined that this linky would be my motivation for using my lovely new DSLR camera to capture the pre-chosen themes, so I was waiting for an opportunity.

Whilst it hasn't been quite as warm as summer of late, in my mind it still hasn't been cold. Thinking I couldn't hold on much longer, I made the girls pose for a photoshoot after school on Friday. To cover the theme, they were sporting their brand new kitten 'scarf gloves' which I'd picked up in the Accessorize sale.

And then, this happened.

Snow! Can't get much colder than that!

There was quite a flurry coming down at one point, and I was a bit worried about getting my precious 'posh' camera too wet. So I switched to my iphone, and I have to say that still does a pretty good job too, outdoors. What do you think?!

Really can't beat the crispness of my new camera for close-ups though:

This one below was also taken on my phone, and even without a selfie stick - not bad if I do say so myself!

I've put all of the photos I took (motto = one is never enough) into a mini movie, feel free to have a quick watch:

Linking up with Mummy B who is setting these challenges - why don't you pop over to see what the others came up with?

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