Thursday, 29 January 2015

Should Katie pay or should the LA provide?

So apparently there's some big hoo-ha on t'internet about Katie Price and her not using her own millions to pay for her disabled son to get to school.

Actually I do know how this started, because I have watched the odd bit of Celebrity Big Brother (sssh, don't tell anyone!) and have even been known to use the #CBB hashtag. I saw the clip on TV where Katie Hopkins told Katie Price she thought she should pay for her son's transport herself, because she could afford it. At the time, Katie Price reacted very well I thought, and didn't rise to the uneducated opinions of the other Katie. She made a good point (in not so many words), that her career is not a stable one, and whilst she may have made a lot of money to date, there's no guarantee that will carry on for ever. Just the same as it is for everyone.

I'm not usually one to jump on a social media bandwagon, but this issue does of course fall very close to my own heart.

For the past four years, I have been asking the question about where our younger girl might go to school when she reaches secondary school age (so that's at age 11 here in the UK). For all children, it's a huge culture change where the schools go from being small and welcoming, with small numbers of pupils and one main teacher per class, to large institutions with hundreds of children and several different teachers for a variety of subjects, taught in different classrooms. Phew, that makes me feel stressed even just writing that!

Luckily, I had no problem with the secondary school I attended; I'd go as far as to say that I quite liked it. I was never in one of the 'popular' or 'sporty' groups, but I guess I was lucky that I avoided any noticeable bullying and so I look back quite fondly on my school days. I so hope that our eldest girl will get on fine and feel the same way about her school. However, I already know that it would not be a good place for our girl with autism.

So we will be faced with the challenge of finding a smaller, more specialised school that is right for her (not as easy as it should be, they are few and far between). Once we have found one, we will no doubt have to battle with the Local Authority to prove that the state mainstream schools are not suitable, and that our choice is what the LA should provide/pay for. On top of that, we will then have the discussion about transport costs, and how we (family and LA) get our child to school, and who will pay for that transport. Listening to the experiences of other parents in our county, I'm fairly sure all this is likely to involve a lawyer on both sides to argue the case - and yes, don't even get me started on what a ridiculous way to spend a whole lot of money (on both sides) that will be.

It is true that the cost of caring for disabled children is higher - they need more support, more individual care and attention, and are unlikely to be able to travel alone. As parents of disabled children, should we have to work twice as many hours to earn twice as much (or more) money than the next mum just to cover these extra needs? Even if we agreed we should, the fact that we would then have to pay all that money back for specialist childcare (if it was even available or easy to arrange) kind of puts paid to the whole idea.

So should you pay if you can afford it? Surely a better discussion would be around why LAs are not providing enough suitable local education provision for disabled children in the first place? Maybe if the lawyers were not called in so readily, that money could be channelled into providing more suitable local education and the need for expensive transport would be greatly reduced. 

Our society doesn't currently means test with regards to disabled children. It also, allegedly, doesn't record all details about disabled children fully, or understand where the money is being spent, or provide suitable local provision for them. So where shall we start?



Our girl is just one little fish in a very large sea. She may swim in a different direction at times (OK, most of the time) but she is still entitled to all the help and support that every other child receives. It's a shame it always comes down to money.





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Wednesday, 28 January 2015

This is our PDA story (week 2)

Welcome to week 2 of 'This is our PDA story', where I hand my blog over to another person living with PDA in their life.

There is plenty of information about PDA (Pathological Demand Avoidance) on The PDA Society website at www.pdasociety.org.uk which could help parents, teachers and other practitioners understand this condition. More importantly the website offers different strategies to use to help children and adults who have PDA.



I was so pleased that so many of you took the time to offer support in your comments last week. Sadly we know that not everyone is quite so understanding, so it really helps to hear from those who are. Thank you all.

So here are the words of another Mum, telling her story of PDA. I know she would really appreciate it too if you were able to take the time to leave her a comment on this post; as we found out last week, the support, even if only virtual, really does help.



Here is what PDA looks like in our house:

Sometimes someone will suggest we get involved with this or that, or ask in surprise why we don't have time to help with some class or event that they feel is a good cause or a good opportunity.  I wonder whether to slap them, shake them, or resort to manic laughter, though I haven't actually done any of those things yet, because I always remind myself that they just really Haven't. got. a. clue. 

Why wouldn't we have the time? (And the idea that stay-at-home parents have all kinds of spare time is a whole another issue!)  We home-educate.  My husband doesn't have to commute to work.  We only do one or two extra-curriculum activities at a time for the children.  Sometimes I'm sure people picture us looking like a family from a magazine, me perusing Pinterest for our next family craft, the children looking up from their quiet work sheets to smile at the baby while he lies cooing gently in his cradle... It's not like that. 
Before I had children I spent some time working as 1:1 support.  I usually only did 6 hour days, and rarely did more than 8 hours, because it was so physically, mentally, and emotionally draining to give constant focussed attention to someone who needed considerable support to get through a normal day.  Now I do that job all day, every day, and am on call through every night.  The main difference is that I don't get paid for it.  And I don't get sick days or holidays.  And I am also a wife and mother and have other children and a household to run.

But how do I explain to people who see us casually now and again that our exceptionally bright, physically capable, school-aged child needs help through every step of the day?   I don't like to tell other people about her struggle, because that's her life and her story.  So we don't explain.  We let people judge us.  I know the things they say, because often they don't bother being too discreet.  Sometimes it hurts, but I'm pretty sure that, as an adult, I can handle the remarks and the snubs better than my child would if it was her they were discussing and not her parents.  Once or twice I've tried a quiet explanation of "it's ok, it's a form of ASD", but I've already heard several versions of the "but my son/nephew/neighbour's child is autistic and he/she/they don't do that - it's obviously down to parenting" conversations.

My child doesn't fit neatly into more well-known boxes.  She doesn't look autistic.  From the outside, what she looks like is incredibly spoiled and defiant and deliberately uncooperative. (She's not. She's fantastic.)  She looks like people's common fears about home-educated children: shocking behaviour, no social skills, and can't even read.  Unless you live this life, I don't think you can understand how isolating, how exhausting, how just plain hard it is to have a child who looks normal and isn't, or how hard it must be to be that child.
It is also really is just plain hard to try to get across to others what our reality is like.  Other parents use words like "meltdown", or talk about their house being "trashed" or "wrecked" by their children, and it gets difficult to try and describe something different with the same words, and to step up the language to fit the difference would mean using a vocabulary I would rather not use when discussing a child.  Chances are, though, that when, for example, a parent of a more typically-developing child uses the word "meltdown", they probably mean their child cried and maybe flopped and yelled a bit. They are probably not picturing their child screaming so loud and so long that she leaves puddles of saliva on the floor and develops croup from the irritation to her own throat, or biting so hard that she draws blood, or throwing anything that comes to hand at anyone within range for an hour or more.  And when they say their house has been wrecked, they probably actually mean they have too many toys and a bunch of them got dumped on the floor.  They probably don't mean that everything that can be smashed, chewed, ripped, or thrown has been.  Likewise, when they say it "takes forever" to get out of the house, they probably don't mean that they cancel their already minimal social outings on a regular basis because the distress that it would cause is simply not worth it, and they know anyway that only one parent at a time can enjoy any outing because it takes at least one parent's full attention to manage their child's behaviour.  (And there are two of us - think of the single parents who live this life!)  They probably can't actually imagine how it can take two hours and more to dress one child, or imagine that said child might then go and bury her clothes in the garden in the time it takes to get the second child dressed for the outing.  When they say preparing for the holiday season is "a nightmare", they probably don't actually mean they wake up in a cold sweat from anxiety-inspired Christmas dreams starting in August.

For her part, my child is wonderful.  She is so sweet and straight-forward, she tries so hard to behave properly.  She has this romantic imagination, filled with mermaids and magic, alongside a love of logic and facts.  David Attenborough is her hero, and she's been quoting famous poems since before she was two.  She is petite and dainty and graceful, and dances ballet all over the house.  She is just so full of life.  She also has some fundamental cognitive skills that are missing or delayed and that are just so hard to pin down.  Theory of mind, ability to read emotion in others and regulate her own, the ability to adapt what is in her head with what is outside it, connecting one event to another in a meaningful cause-and-effect flow, the skill of adjusting one's actions when an expected outcome changes - these are skills that most people develop so smoothly that they seem to be innate, yet for her they are challenging skill-sets that must be learned through trial, error, and long, hard practice.

Whether it's the difficulty of adapting to a fast-paced and unpredictable world (bearing in mind the difficulties with sensory processing and theory of mind), or related to the general intensity of emotion and difficulty with toning them down, or both, there is also the anxiety underlying her unusual behaviour.  Fear can bring out challenging behaviour in any child.  My child lives with a lot of fear.  The main result of that fear is the demand avoidance that is the crux of PDA.  She describes it like this:  "When someone tells me to do something, I just feel like I lose all my energy.  Then if they say I don't have to do it after all, then my energy comes back."  A wise friend of ours identified this as a stress-response.  It's a shut-down in response to the anxiety resulting from someone, even herself, placing an expectation on her.  The result looks like defiance, but it's not; it's fear.

So, we are a PDA family.  It's not something we deal with on the side; it is our life, and PDA affects every aspect of our lives.  We are a family, and what we do as a family has to work for everyone.  It's hard work, but it works.  It also takes a lot of time, energy, creativity, research, and humour.  I've been tired for years.  I don't have time for browsing on Pinterest.  I don't have room in my life for much outside of my job as a mother.  My life doesn't look like yours.  But it works. I used to be into extreme sports, now I do extreme parenting.  But our family is a happy one, and our children are growing beautifully, and one day they will grow up and fledge into independence, in one degree or another.  They say the proof is in the pudding, and so far, this pudding looks awesome.



Linking up with the lovely Jenny over at Let's Talk Mommy for Share With Me:

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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:  my.rednoseday.com/sponsor/stephcurtis.


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 (www.teamhonk.org) 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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