Friday, 15 May 2015

Pathological Demand Avoidance Awareness Day and Born Naughty?

May 15th was National Pathological Demand Avoidance Day. That's a bit of a mouthful, isn't it?! Let's just call it PDA day for short, shall we?!

A programme called Born Naughty? was broadcast on Channel 4. This was a hugely important moment for me. As I understood it, the 'professionals' (some like to call them practitioners) on the show would diagnose 9 year old Honey with Pathological Demand Avoidance, a certain type of autism which I'm hoping regular readers of my blog will by now know all about.

There were complaints about the title of the show, as many feel that children such as ours are not 'born naughty' but are in fact born with a hidden disability. They have a different way of thinking and living, and much higher anxiety levels when faced with everyday demands when compared to the majority of their peers. The title was of course created in order to cause a stir, but it is important to notice the question mark. The question is to get us all thinking whether any child is 'born naughty' or whether parenting and conditions have a large effect on how a child develops.

The predictable media storm broke out on Twitter during the show, largely due to a certain individual, who obviously needs help herself, outpouring vitriolic comments about not only the general parenting involved, but also the weight of the child. I'm not going to dwell on that evil-ness (is that a word?!), though of course many others have. For me, the old phrase 'no publicity is bad publicity' runs around my head and I see this show as a watershed moment, a chance to have PDA confirmed as a real condition, that many have to live with every day. I've heard accounts from people I've met of how their children have been wild and out of control, threatening with knives or wanting to kill themselves.

It's been over 30 years since the first studies and recognition of PDA, and yet so many practitioners are still too sceptical or scared to diagnose it. We need more people to listen and to understand that this is not bad parenting, it is not being naughty. An early diagnosis and then using the correct strategies can make all the difference to a family. Although we haven't had a formal diagnosis for our girl, I am relieved that I had that 'lightbulb moment' early on and we adpated our lives before it all got way too stressful. We have been extremely lucky that everyone agrees with us and uses the best strategies. 

I realise that I am likely to spend the rest of my life fighting the ignorant people out there such as those showcased on Twitter last night. Actually, I won't fight, I will take the words of an inspirational blogger friend of mine, Hayley from Downs Side Up - what we all need to do is 'gently change perceptions from within hearts'. If I can achieve only half of what Hayley has, I will be proud. I'll never give up though; I will do it all for my gorgeous girl.



PDA is a type of autism. Children diagnosed with PDA are autistic; they are not naughty but they 'can't help won't'. This phrase is a perfect way of describing how difficult they find it to comply with everyday demands, even those that may bring them joy (such as 'put your shoes on, we're off to Disney').

The first port of call for anyone who thinks they recognise signs of PDA, in either their own children or those they teach at school, should be The PDA Society. Please check out their website at www.pdasociety.org.uk.

For further views on last night's programme, please try these blogs by other writers with experience of PDA too. Don't judge until you have lived it yourself.

chloe-and-me.blogspot.co.uk

weebitsomething.blogspot.co.uk/2015/02/a-new-excuse-for-parenting-failure.html

aspernauts.wordpress.com/2015/05/15/15th-of-may-is-pda-awareness-day

dinkyandme.wordpress.com/2015/05/15/pda-awareness-day-and-dinkys-annual-review-shows-that-awareness-is-sorely-needed

understandingpda.com/tag/katie-hopkins

whatitmeanstofeel.wordpress.com/2015/05/14/on-born-naughty-damaging-misconceptions-and-katie-fucking-hopkins

rossmountney.wordpress.com/2015/05/15/born-naughty

Did you watch the show yourself? What did you think? Any thoughts on that certain individual and her madness?!



Post Comment Love
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Wednesday, 13 May 2015

This is our PDA story (week 13): Born Naughty?

Welcome to week 13 of 'This is our PDA story'. 
So here is a different kind of entry to the series this week. I'm hoping I'm not too late to tell you all about the television programme which is due to be aired on Channel 4 tonight.

It's called 'Born Naughty?', it's on Thursday evening at 8pm and you can check it out on their website  www.channel4.com/programmes/born-naughty.

Of course the title brings with it much controversy. The programmes in this series being aired by Channel 4 are intended to show the viewers families who are living with children with challenging behaviour, and to see if the behaviour is caused by their environment, living conditions and parenting, or whether the children really can't help it. 

The first programme from what I understand, tells the story of nine year old Honey who has waved knives at her parents and threatened her classmates. Sadly I have heard many stories of children like this, shocking as it may sound. Many of these children should probably be diagnosed with PDA (Pathological Demand Avoidance), but sadly so few health professionals have heard of this condition which is a particular type of autism. 

It's very important to me to spread awareness and make sure families like this receive the right support. In most cases, that is not a question of imposing stricter routines and punishment, as you may believe if you have only ever had to parent in a traditional manner.

Sasha was born autistic. She was born with PDA. It is not the way that I parent which makes her like that. I can parent our older girl in the traditional manner and it works fine for her, but not for Sasha. 

I'm not saying I'm the perfect parent, or that I always get it right, and I'm sure there are times that I do 'give in' to Sasha too easily. There are also times when Sasha is naughty. She's not perfect either! I tried to do the traditional parenting with her, just as I had with our eldest. It didn't work, and it wasn't because I didn't try those methods for long enough. Believe me, my life would be much easier if I could follow those methods; I wouldn't choose to make life this difficult.

Of course I understand why other people don't 'get it' - they don't have to live with it. I'd hope that they could be more open-minded and realise that they don't have all the answers though, and that not every child needs a 'good smack'. I'm quite glad I won't be able to tune in to Twitter at home tonight, as I know how many judgemental comments there will be from those who don't understand and who aren't prepared to listen. Shame on them.

I would dearly love to see comments here on my blog from anyone who watches the show and who has questions or thoughts either way. It's a lot to take in - believe me, I know! 




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PDA is one type of Autism Spectrum Disorder, ASD (now also called Autism Spectrum Condition, ASC). It may seem to be a 'relatively' new diagnosis, but it was actually first realised in the 1980s, over 30 years ago. There's more information about the history of PDA on the PDA Society's website.  

For lots more informationn, support and good strategies to follow for children with PDA, please do check out the main website:
www.pdasociety.org.uk

Linking up with Let's Talk Mommy:

Let's Talk Mommy
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Sunday, 10 May 2015

MAD Blog Awards 2015.... please vote!

I know the election is over and no-one wants to talk votes any more... and I'm sure I say the same every year. I don't like begging for votes. Who does, I wonder?! Maybe those who would make good salespeople, those with the gift of the gab. Not little old me.

Anyhow, I digress. I'm not very good at this, you see.

I've been blogging for over 5 years now, ever since we received a diagnosis of autism for our youngest girl. 

Steph's Two Girls may not have been very imaginatively named but it started as a diary to help me, and our family. It's kind of meandered into what it is today - still pretty much a random kind of diary, but with a large leaning towards trying to impart wisdom about the special kind of autism we believe our girl has, PDA (Pathological Demand Avoidance). Children with this condition are not naughty, they just 'can't help won't'.

My life has trotted on in a much different way than I ever thought it would since the diagnosis; before children I enjoyed being a toy and stationery Buyer but over the last few years I've worked for a local autism & ADHD charity and become a volunteer for a local parent carer forum. I've also helped to pass on Early Support training to lots of parents & carers of children with disabilities as I know how difficult it is to be sent away from a paediatrician's office after a bombshell has been delivered, with little more than a tiny leaflet, and no follow up support at all.

The next planned step for me is to run a course specifically for parents & carers who believe they have children with PDA. I'm no expert, but I can help to pass on strategies which may make family life easier for some. 

I hope I have some readers who like what I write, but I'm well aware it's kind of a niche topic, and there are plenty who don't want to hear about it. I'm always amazed by how many supportive comments I do get though, and I treasure every single one. I hope I help others by explaining our own situation - of course no two families are the same but some experiences are shared and talking about them really does help. A form of free therapy!

Awards are fantastic and heartbreaking at the same time. Not even making it onto a shortlist is disappointing every time, and yet there are so many thousands of great blogs out there - why should anyone vote for me? I will freely admit that I'm not the best writer in the world; I never aimed to be a journalist or a novelist. I can honestly say that I don't want an award for me personally, but to gain recognition for my little old blog would be fab, to try and spread even more awareness about autism and PDA. 

So here I am finally getting to the nub of this post.... it is time to nominate for the MAD Blog Awards! I would dearly love to attend this award ceremony in the knowledge that some people appreciate what I am trying to do. I'd never expect to win, and I honestly don't think I'll even get shortlisted, but if you don't ask, you don't get, right?! 


So I'm politely asking, pretty please, click on this link 


 and enter my blog url which is



(you can just copy and paste that!) into any category you think I deserve votes in - you are allowed to enter me into all of them (and I actively encourage that - I'm shortly to cover much more travel, fun, craft and photography) but some are not such a good fit (pregnancy is not something I'm likely to ever cover, sorry Mum ;) ). Sadly they've not introduced a category just for me yet (I live in hope) but Schooldays is probably the closest fit as my two do still go to school (on a good day). 

You only have to enter an email address for you so it's not difficult - oh and you will have to nominate me as Blog Of The Year to get to the other categories. Unless you prefer someone else's blog of course. I'll not hold it against you. Voting ends on 20th May at 530pm but I'd suggest you do it right now before you click away and forget :)





Last year I had to take part in a Bloggers Flashmob to attend these awards (video evidence is at mad-blog-awards-2014-bloggers-flashmob) and the year before I dressed as a carrot to win a ticket for doing a MAD thing... it'd be so refreshing to go and feel as if I was actually a valid part of the event for once!!




Thank you so much, I really appreciate you taking the time.
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Saturday, 9 May 2015

Top ten Tips for a Florida Orlando Disney Holiday

Been there, done that.



Here are my top tips for going to visit Orlando in Florida for a Disney holiday.


1. See all those clothes you're thinking of packing? Stop. Take at least half of them right back out of the pile. You definitely will NOT need that extra pretty dress 'just in case'. It's May right now, not even full blown summer, and it's already hot and sticky. You would definitely rather hang around in a bikini (or swimsuit, for those who haven't paid attention to tip number 5) all day.

2. Definitely don't pack any clothing items that are a little on the tight side to wear, in the hope that you will sweat off those extra pounds. See tip number 5.

3. Tops with shoulders/sleeves are much better than strappy tops when you are carrying a rucksack containing everything but the kitchen sink around all day at the Disney Parks. Trust me, the straps rub.

4. However many pairs of shoes you are thinking of packing, take three pairs less. You will not get around to wearing them all, and trying to decide which ones to wear every morning will become a chore because of the heat.

5. You will be tired. This will make you want to eat more. Avoid the snack aisle of the supermarket, and the iHop restaurant menu. You will struggle to avoid the ice cream, pretzels and candy floss stands in the Disney Parks. McDonalds is on pretty much every corner outside of the Parks.

6. Stress over planning your days out meticulously, but be prepared to scrap all those plans and go with the flow every day as soon as your first FastPass+ ride breaks down.

7. You just HAVE to go to Discovery Cove and swim with dolphins. It is the best day out EVER. I know some people may object on the grounds of cruelty to animals, but those dolphins looked pretty smiley to me. Plus, their life expectancy in the Park is 50+ years old as opposed to just 15 when out at sea.

8. You won't use nearly as much suncream as on other summer holidays. There is no time for sunbathing, so half of your body is always covered (a good thing if you have already forgotten tip number 5). Leave it out of your bag so you have more space to bring cheap tat souvenirs home with you.

9. Pick up two bottles of Pimms at Duty Free on your way out. It is nigh on impossible to buy when you arrive and you will definitely need more than one to last a two week holiday *sadface*

10. Start saving now. Two weeks is not long enough to do everything. You will want to go again, and again, and again.


(video of Tamsin being pulled along by a dolphin!)
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Wednesday, 29 April 2015

This is our PDA story (week 12)

Welcome to week 12 of 'This is our PDA story'. This series is all about bringing to light the many challenges of living with PDA (Pathological Demand Avoidance), from those who experience it daily.

PDA is one type of Autism Spectrum Disorder, ASD (now also called Autism Spectrum Condition, ASC). It may seem to be a 'relatively' new diagnosis, but it was actually first realised in the 1980s, over 30 years ago. There's more information about the history of PDA on the PDA Society's website. 


The following words are from a young man who was diagnosed with PDA at the age of 18. As mum to a child with PDA, these words give me great hope for the future.

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At 14 I was diagnosed with Asperger's syndrome, this was a huge relief to my family but something didn't quite sit right. My diagnoses was updated to PDA at 18, by the same woman may I add, she just wasn't too familiar with PDA at the time I was diagnosed.

Prior to my diagnoses I was lucky enough to come across a woman who runs a home from home schooling system from her house, incidentally, the majority of her students display signs of PDA. Her philosophy is "Freedom to learn" What a fantastic little proverb for someone with PDA! 
The emphasis was mainly on enabling us to cope with life. The freedom to learn reduced the anxiety enough to clear our minds. Children with PDA are incredibly receptive to indirect messages/commands. Direct forms of engagement can be a great risk with PDA. And if the message is delivered incorrectly it will more often than not be rejected. Being given a range of things to learn was extremely effective for me because I got to figure out for myself what worked and what didn't.

In my experience, homeschooling is the best way for kids with PDA. The current education system simply can't accommodate the intensity a PDA child exhibits. We fall behind not because of weakness, apathy or an academic disinclination. We are laced with anxiety due to the pressure of abiding by a system which we aren't compatible with. The outbursts aren't naughty, it's a survival instinct. It's what we identify ourselves with, constantly on guard, forever frightened. 

Autism only becomes a disorder when it's placed in an environment where freedom is discouraged. I've met many autistic kids, and I would never dream of calling them disabled or "not all there". When they are put in their true elements they flourish, but the opportunity to flourish is as rare as the alternative system we crave for. We're not bad, we're just waiting for the new paradigm to be built, and together, with a resolute and positive approach we can make it happen, as our frustration grows so does our determination, and we can all raise awareness on these matters. The current system is only viewed uncritically because it's existed for so long and many have served from it. 

I'd rather receive the world in it's entirety and pick out the bits I need, over being spoonfed what society wants me to learn. PDA children have an insatiable appetite for knowledge, but when someone intervenes or attempts to commandeer their ship of learning it just delays everything. Some of this stuff sounds bizarre, but PDA is totally irrational in all it's entity. Bizarre problems require bizarre methods. I find that PDA kids go through obsessive stages, where their entire focus is directed towards one area/subject, and they will indefatigably learn all there is to know about that certain thing before moving on to the next. This is such a wonderful process if left alone. This process can be very easily disrupted through school or needless demands at home. It's just the way of the PDA.

I dropped out of Uni last year. Not because I'm a failure, it's because I am PDA! I'm me, I'm gonna be authentic now: The demand is too high. I need freedom to learn!!! 
I teach guitar lessons for an income. But I have dedicated my life to raising awareness on these things we all have to live with.

I help out at the home from home school I used to go to and give occasional talks to parents. 
If it's too demanding and dictatorial I still can't bring myself to do it. The woman simply offers "Harry there are people who would like to talk to you, are you up for it?" And that's fine for me to gauge what's right for me. If she were to organise it and order me to go Id simply sit home and refuse. I'm more aware of my PDA as an adult but it still effects me. I improvise most of what I talk about.

I write a lot, and I'm working towards a book. Though I don't have a full time career, I'm very happy now. And my life has purpose and value when I never thought it would. I have found a way of making my life work for me because I've followed my passion and nothing has come in the way of it. Other PDA kids all have the possibility of living, rewarding, happy and successful lives. All that energy can be channelled.

 I suppose the thing most integral to my progress was turning my vision inwards. I was under the mistaken belief that everyone was accountable/responsible for everything ever! and I think this just came with age and experience. PDA is such a sensitive, fragile and intimidating thing to bear. I find that it's not only parents and teachers who are intimidated by it but the hosts are just as overwhelmed! We have to lug it around after all. Though it is a heavy burden, there's something about having it that's so precious to us, we subconsciously conceal it, no one can touch it, it's ours, so I guess this is why outbursts and meltdowns occur when we feel people are tinkering it or trying to weed it out of us, I speak metaphorically of course! It's just bloody hard to explain sometimes 
So I got to an age where I self monitored religiously, I learned which foods were right for me, and which environments complimented my energy, and which people would be a catalyst to my inner demon.... 
 





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As always, please do leave any comments of support below as they are much appreciated, and really help to let the writer know they are not alone, and not being judged.

For more reading, and different experiences, please check out previous weeks in this series by clicking below:


Week 11


Week 9 

Week 8 

Week 7

Week 6

Week 5

Week 4

Week 3

Week 2

Week 1 


Please do also visit the website for The PDA Society, www.pdasociety.org.uk, where there is much more information, and also www.thepdaresource.com.


Linking up with the lovely Jenny from Let's Talk Mommy for #ShareWithMe.

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