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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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Wednesday, 22 April 2015

This is our PDA story (Week 11)

So I took a little blog break over Easter, but I'm back now with my 'This is our PDA story' series. There is so much more to tell, so many angles to PDA (Pathological Demand Avoidance), that I can't not share these real-life stories. 
Pathological Demand Avoidance is a particular type of autism. It is characterised by an almost desperate need to remain in control of your own environment, coupled with huge levels of anxiety. One of the main differences between PDA and classic autism/Aspergers Syndrome is that rules and routine do not help. The reason for this is that they are imposed by others, and that takes the control away from the adult/child with PDA. It's complicated, and challenging.


The following words are from a father who believes his daughter has PDA. Some words that stuck out for me were 'she acted as if she was one of the staff, not one of the children'. We have been told in the past that Sophie acted as if she was a mini teacher. PDA children don't seem to understand that they should act as the other children do, and not as adults. Yet in some ways, they can also appear to act like toddlers when they are much older. See, I told you it was complicated!


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Our beautiful daughter, whom I shall call Tinkerbell, was born just over ten years ago.  Shortly afterwards, she evidently decided that breathing was far too much of a demand and so stopped.  Thankfully, the midwives were able to persuade her that breathing is a good thing!  Looking back, this was probably our first introduction to PDA but, of course, we didn’t know it at the time.

Tinkerbell was exhausting as a young child.  Every time we felt like we had settled into a routine, she would change it.  We kept cutting back on our outside activities because we didn’t have the energy.  We looked at what other families were achieving and wondered why we could never manage a fraction of what they did.  It just didn’t make sense.  She started Nursery early because the health visitor saw she was such a handful and felt this was a sign that she was ready.  There were some curious incidents at Nursery but nothing that gave cause for concern.  What was clear, though, was that she generally chose to do her own thing rather than joining in with group activities and often acted as if she was one of the staff, not one of the children.

Looking back, things really began to unravel in year one.  She was falling behind and we could see that she had not grasped some of the basic concepts.  However, the teachers kept telling us it was all OK.  It also began to take longer and longer to get her up and ready for school in the morning.  By the end of year 2, the teachers were telling us that Tinkerbell was lazy and would refuse to do work.  Getting her into school was an all-out battle most mornings and we would have meltdowns on the way home most evenings (it was a five-minute walk home but would frequently take more than an hour).  At our insistence, the school tested her for dyslexia.  The result came back negative but did flag up some specific issues and the school promised to start remedial sessions (these never materialised).  Around this time also, a friend mentioned autism as a possibility.  We mentioned this to the SENCO who was 100% clear that it could not possibly be autism.  As far as the school were concerned, Tinkerbell was lazy and we were being over-protective as parents.  In fact, we were told that we needed to cut the apron strings.

By halfway through year 3, we had lost confidence in the school.  Every time we met with them, it was the same story: she is fine, just lazy, and doesn’t need to be assessed for help.  Promises of help were routinely broken and we, frankly, did not feel the school were being honest with us.  We decided to deregister her and begin home education.  It was immediately apparent that Tinkerbell was a long way behind and, as we suspected all along, basic concepts that should have been mastered in year one were still not right.  We also now had the problem of unpicking years of negative feedback that had left her self-esteem in tatters and meant that she was now actively avoiding anything that looked remotely like school work.

Shortly after we took her out of school, someone posted a link to the books “Understanding PDA” and “ The Explosive Child” on a home education group.  On a whim, I clicked on the links and began reading.  Suddenly, everything made sense!  Not only were these two books describing our daughter as if they had been written specifically about her, but also the management strategies being suggested were exactly the ones that, by unconscious trial and error, we had found to be the most successful.  We began joining PDA groups in summer 2013 and, immediately, it felt like home.  Finally, we had found meaningful support from people who understood exactly what we were going through.  We then began the long road to diagnosis in Autumn 2013.  Due to NHS waiting lists, we are still waiting for that diagnosis 18 months later.

Our life has changed considerably since finding out about PDA.  Our home is, generally, a safe demand-free haven for Tinkerbell and we try to keep it that way.  However, she has become more and more withdrawn socially over the last year and there are a number of activities we have had to drop out of because she cannot cope.  On the plus side, her self-esteem has improved markedly and she has a restored love of learning which is a joy to see.  She has a wonderful character and a quick wit and we enjoy spending time with her.  We feel privileged to be in a position where we can take on the task of educating her and looking after her full time and we have no regrets.

We are certainly not out of the woods yet.  There is much that Tinkerbell needs to learn about coping with her emotions and with social situations.  She also needs the confidence to let us go out without constantly worrying about us until we get back and she needs to learn to be happy in her own body (especially as it changes through puberty).  However, overall, we are really pleased with the progress that she has made since we discovered PDA and very much enjoy being able to pay forward much of the help we have received from the PDA community.

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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 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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Wednesday, 15 April 2015

Together We Can Beat Cancer #RaceForLife

I am NOT a runner. 

I think I've said that before, in my previous post Race For Life.

I wasn't sure why I agreed to sign up for the Race. It didn't seem like me at all. Had I just lost the ability to say 'no'?

Then all of a sudden, my motivation became much clearer.

Tonight was my first training run for my Race For Life. I'll be doing the real thing in July, so I'm thinking that's still 3 months away. Plenty of time to get fit, ahem.

I've been putting it off, and off... but the good weather and a husband home relatively early from work meant that I no longer had an excuse. Plus, I needed to try on the kit that I had been sent before it got too late.



I thought I'd just take a stroll out around our local area to check the distance and see how I felt about running.

I turned my music up, and as Take That blasted out, I just decided. 'I can do this'.

I started to jog and felt very self-conscious in my bright pink top and cap so I kept my head down. I was afraid that I would be overtaken by some walkers, I was so slow. I was barely putting one foot in front of another.

My heart began pounding after 30 seconds, and my breath was so short that I seriously worried I might fall over. Did I ever tell you I've been diagnosed with sports-induced asthma? Yes, that is a 'thing', apparently. My lungs are not even big enough to do a proper blow-test.

Anyhow, enough with the excuses. I'm never going to be Zola Budd. That wasn't my aim. I'm not competitive in the slightest, though I always did get embarrassed at how poorly I performed at any sports.

I kept on going, promising myself I could stop where there was a break in the path. Then when I got to that, I thought 'just a little bit further, across that road'. Then I realised I was hidden from the road and no-one could see how slowly I was running so my embarrassment disappeared and I concentrated on putting one foot in front of another. And another. 

Then another road to cross, and I was in full view now of drivers for the first time. I kept my head down (the cap is actually brilliant for blocking your view) and ploughed on. I realised there was a lady walking on the other side of the road, in the same direction as me... and I was overtaking her! Maybe I wasn't as slow and as rubbish as I'd thought!

My chest was aching though and I really thought I'd have to stop, or at least walk. Then I thought of the total unfairness of this stupid C word, and I decided I wanted to keep going for everybody. For everyone who has had to suffer, and who have and have had life much more difficult than me.


I ran a whole mile without stopping. It may not be much to you, but to me it was masses. It was a case of Mind over Matter and wanting to prove a point badly enough. Not sure who to exactly, but I did it. 

My fundraising page for this is www.justgiving.com/stephcurtis

Huge thanks to my first sponsor, the fabulous Steph (great name) who writes at Was This In The Plan? She and her family are a huge inspiration to me and helped to keep my feet moving (though worth noting she didn't help with the embarrassment levels as she has run several marathons as opposed to my measly mile). Thanks also to the lovely Rebecca who writes at the Beesley Buzz for her kind donation. I also thought of my little brother who is about to run his fifth London Marathon for a fifth different charity. He's a star and you can read about his quest here

Me, I'm just doing the one Race. I should have started younger.





Linking up with the fabulous VeViVos blog and her #PoCoLo linky: 


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Siblings {April 2015}

Back to the 15th of the month again and I feel like this year is already rushing away! Luckily the sun has come out this week and it has reminded me that we are going to have lots more fun before the end of the year. I'm sure the girls will love each other just as much at the end of it...



This month's picture was snapped today as we popped into the library in town. Sophie was desperate to hire out a DVD which we've not done for a while, and we had to sit a while at the Information desk while it was unlocked. Tilly playfully sat on Sophie's knee first, which really made her smile, but then they switched over and I remembered to grab a quick photo of my two smiley happy girls. I love them!!

I can't resist adding an extra picture for you, also taken today, at their request.....





dear beautiful
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Thursday, 2 April 2015

Different, Not Less. #WAAD2015

Today is World Autism Awareness Day, part of World Autism Awareness Week, which is in World Autism Awareness Month (April).



Autism can be a hidden disability. With these photos of our 7 year old autistic girl, I'm not entirely sure if I'm trying to say 'look, she's just like any other girl her age' or 'look, everything may seem the same on the outside, but on the inside she is different'. 

Different is not bad or good, it's just different, not less. It's not something we should be scared of, or should try and hide.

I think these photos show how happy our girl has been - how happy we all have been. She often finds trying new things difficult, and at times we can struggle to even leave the house as she needs to de-stress at home, but as you can see from the photos we have been able to enjoy many different experiences with her!

I'd like to think any and every day could be Autism Acceptance and Understanding Day. I don't think we should wait a year; educating is a continuous process so I'm afraid you'll just have to put up with me blethering on about it as often as I can.

However, I did want to take this chance to try and update you with how our youngest girl is right now. To explain how she has changed over the 5 years since her diagnosis, to let you know what a gorgeous young lady she is growing up into and how very proud of both our girls we are. 

I thought it might help if I sent an email out to parents of children in her Year Group at school. It went something like this:

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Dear Year 3 Mums,

Many of you will know that our daughter in class 2 is diagnosed with autism. Today is World Autism Awareness Day so I thought this might be a good day to let you know a little more about how she is at this stage in her life.

I’m attaching a ‘one page passport/profile’ which is a sheet of basic information all about her. We would normally update this every year and pass to the class teacher and any other members of staff who will come into contact with her. Of course there’s a lot more to her than this, but it’s a quick and easy read.

The autism means our girl struggles to process information in the same way as other children. She has sensory issues which means she struggles to hear or listen properly when there is a lot of noise, which makes general class instructions quite difficult for her to take in. She likes to be at the front of the lines so that she can see and understand everything that is going on clearly. She has difficulty concentrating for longer periods of time and she needs to take short breaks frequently. Whilst she is very capable of achieving good work levels, all of these issues make her very anxious every day and she will often choose to withdraw from lessons or activities if they are too overwhelming for her. She rarely sits through an assembly because she can’t ‘zone in and out’ like most other children do – if she can’t hear or see properly, it’s all very confusing for her. She doesn’t like being asked questions as it takes her a while to process and she feels under pressure to think of an answer.

Her classmates have thankfully been very accepting of how she is and we are hugely grateful for that. In case your children start to ask more questions about why she behaves and reacts the way she does, which can be different to how the majority of children her age are, I thought I’d send some information which I appreciate you may or may not have time to read! We think that explaining it briefly as ‘she was born with a brain that works differently’ is fairly simple for the children to understand at this age. You could also say that it is as if she is constantly wearing a pair of headphones with the volume switched up to maximum, and that makes is difficult for her to hear and concentrate on everything else going on. I’m attaching a great booklet called ‘Growing Up Together’ which is aimed at children and how they can play with children with differences.

Our girl loves My Little Pony, Minecraft and Skylanders, so if any of your children like these things too, she would love to chat about them! She is generally very sociable and she loves playing with others; however she much prefers to make up her own rules and she always likes to win! She loves the idea of parties and playdates - please don’t be offended or upset if we have to leave a party early though. The noise and lack of structure can be difficult for her to cope with. I would always stay with her at any social occasion as the need to ‘escape’ is often there.

Her older sister is in Year 5 and she does not have autism. She plays very well with our youngest girl but can get embarrassed easily if she does things that are ‘different’ and not expected in public. Whilst autism is not a secret word in our house, and we are ready to explain more when she starts asking questions, she is not quite at that stage of understanding yet. So if your children start to talk to her about autism, she would probably be confused! However I am more than happy to answer any questions you or your children may have about autism so please do feel free to grab me in the playground or email me back any time.


The specific type of autism that we think our girl has is called PDA – Pathological Demand Avoidance. You can read more about it on the NAS website but in a nutshell it means she avoids doing things which cause her anxiety, or which make her feel like she is not in control.



Thanks for taking the time to read this.

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The booklet 'Growing Up Together' is a great resource I've just found online (Google is so amazing!) and although it was written for an American audience, I think it's still very relevant (after all, we're not that different!). It can help explain to younger children why they have a classmate who is 'different'. You can see it at www.bridges4kids.org.

Finally (thanks for reading if you've got this far!) I think you can describe autism as being 'wired differently' or as running on a different operating system. It's like when dedicated PC users come across a Mac and have difficulty figuring it out.


Different, not less.




Linking up with the lovely Victoria for #PoCoLo


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