Monday, 18 February 2013

Little People UK

Little People UK is a national support group, set up by Warwick and Sammy Davis.

The aim for the organisation, which is soon to be a charity, is to promote education and awareness of issues around dwarfism  and most importantly an inclusive, positive community for little people and their families in the UK.

I asked Katie Purvis committee member and media officer for LPUK for a comment and she sent me this saying i could use as much or as little as I needed.

It's lovely so I included it in full.
"About 15 months ago the phone rang and I was greeted by a very enthusiastic voice, sharing her dream of a group for Little People, run by little people and parents of Little People.  
A group that would support, through friendship and experience, share stories and put people at ease in how to deal with theirs or their child's condition. 

This group would be a positive way forward in a world that had often found awkwardness and embarrassment around dwarfism, with the main goal being that were proud to be Dwarfs.
The caller was my very good friend Sammy, she filled me with excitement and intrigue for this new venture and i knew immediately that i wanted to be part of this vision. 
A few months later our first get together took place and was an immediate success. We had our first convention 7 months later and once again this was greatly supported, and a great time was had by all! 
I met Sammy on a film set back in the 80's whilst I was working alongside both my father Jack Purvis and Sammys dad, Peter Burroughs (both Actors in their own right) and also un-beknown to us at the time her wonderful husband to-be Warwick Davis on a movie called Labyrinth.  
Sammy had come to visit her Dad , and being mostly a male dominated Corps of goblins, (the characters that we were playing in the film), Sammy was a breath of fresh air for me.  I was 18 and the only girl.
As our dads always seemed to be in the same movies, our paths crossed many times and we also found ourselves working on many films, tv and pantos together including a stint together in Snow White with Holiday on Ice.  
Our friendship was an instant bond because of the dwarfism we shared and Sammy, although much younger than myself, was inspirational to me in how she lived her life. 
12 months on from our very first get together officially as a group , we celebrated LPUK's first birthday this month with great support and huge success, along with many people who all have the same aspirations and common goals, to do away with ignorance and raise awareness. and together we hope this is just the beginning."  Katie Purvis

Click on the links to hear my interviews with members.

Francesca Mills and Leah Flack

Rebecca Nuttall

Donna and Pete Bonner

After just one year Little People UK has already established itself as crucial support network for members and their families.

The Little People website details the intention for the organisation:
"Little People UK was launched in January 2012. We are an organisation that offers friendship and support to people with dwarfism, their families and friends."
Sammy inited me to LPUK's first birthday party as a guest. I wanted to blog about it because in the difficult and cynical days we're living through, it's a lovely example of an organisation based on a spirit of optimism, compassion, support and empowerment.

Sammy and Warwick and the LPUK team have fully achieved their aim and so much more.

Saturday, 9 February 2013

Taking the Test

A test to check for indicators of Asperger's syndrome has appeared in The Times this morning.

It's been devised by world autism expert Professor Simon Baron Cohen in conjunction with his colleagues at the Autism Research Centre so it's legitimacy is sound and it's widely used in Silicone Valley.

The article makes clear that AQ is not a diagnostic tool but simply gives an indicator of the likelihood of Autistic traits.

I took it and scored 29. Anything from the mid twenties upwards is a potential indicator for Asperger's Syndrome.

I'd also direct everyone to the input in the article from Dr Judith Gould. With Dr Lorna Wing, Dr Gould created the theory of autism being a spectrum of severity and capacity.

When a close relative was diagnosed with Asperger's syndrome by Dr  Gould she also met with me and although wasn't an exhaustive analysis or testing  of me she decided that it was unlikely that I warranted a definitive diagnosis.

I've always struggled with reading people. I do get preoccupied with certain details, to the exclusion of other things and I loathe parties and small talk and always have. I much prefer speaking to people one to one.

I do view the world differently to other people but I've always been glad of this and my over sensitivity because it makes me constantly question both myself and others and causes me to try to fight against injustice when I see it.

I've also spent a lot of my time devastated because of unfairness. I have a preoccupation with fairness which is often counterproductive in the face of the preponderance of unfairness everywhere.

The fact is I've had to learn to deal with this and other troubling aspects of life and so whether I have Asperger's or not, whether I feel in step with everyone else or not, simply places me along side many others. We are all of us to a greater or lesser extent on the autistic spectrum.

I constantly ask questions and always struggle to understand things and situations which other people breeze through. I've always seen that as a positive though. I think constant questioning of everything does enable me to try and see things from every side where possible.

The truth is I've learnt to deal with most of these traits. I do get over emotional and take things to heart but I also get very upset if  other people or animals are in pain or distress.

I spent most of my teens in baffled confusion as to the ability of my friends to know the social rules so easily and so well.

Whilst I muddled through wondering what on earth was going on and why people wanted to go to parties all the time.

I'm writing this blog in terms of myself only to illustrate that there is a huge range of traits and indicators  within all of us. A test in and of itself, whilst a good indicator given it's pedigree, won't necessarily define or describe you, in my opinion.

It is just a good place to start if you want it to be.

I hope that my own emotional sensitivity is balanced out by my empathy levels for others. It's a misnomer I feel put forward by some less versed in experience of people with autism to assume that everyone on the spectrum isn't capable of empathy.

According to Dr Gould who spent several hours testing and talking through the history of my family she decided that it was a distinct possibility that everyone around me, whilst I was growing up, was on the Autistic Spectrum. Both my daughters are autistic and so there is clearly a genetic predisposition.

I certainly have always gravitated towards people who are outsiders or deemed "different". They just always seem nicer to me.

My point is this if you choose to take the test, great. If not great, but don't immediately assume that you have autism because diagnosis is a serious, lengthy process.

I fight for and support those seeking a diagnosis for themselves or their child..

I did this for my older daughter because it was crucial for her at that time. She needed me to. Now that she is an adult her diagnosis is her own to identify with as she chooses. For my Younger daughter with accompanying learning disabilities this diagnosis was done for us with no need for a fight.

I'm only talking of my own view in terms of myself.

I don't know if I have Asperger's Syndrome or not because I haven't been diagnosed. I suspect so or, more accurately, that I have many traits, but that is just my own opinion based on my experience.

It can't be overstated that diagnosis is the first commandment when it comes to receiving crucial help for children in school and a very important indicator for learning the skills to adapt to work and life. It can be a liberation to reflect on your life lived and for the future in understanding yourself and others but a diagnosis alone isn't enough.

For many parents and children diagnosis is crucial in order that they get the best support in early life as a foundation for their whole life. For many people learning of their diagnosis later in life it's vital too. It's so important to remember the uniqueness of all people with autism and that no experience of acquiring a definitive name for their triad of impairments is ever the same.

It remains their diagnosis and theirs alone.

A broadsheet indicator test can be very useful. It is however only useful, if it's useful for you. If you're keen to know more for whatever reason, I would recommend discovering  more at Ambitious about Autism and The National Autistic Society for help and advice.

Tuesday, 5 February 2013

Emily's blog

Hello Emily this a blog Just for you. We love you very much.

Here are some of your favourite things

Honey Honey.

The snow song

A photo of Emily and Daddy

 A photo of Millydog fast asleep at Emily's house

A photo of Emily at Christmas with a new Minnie toy

A photo of Emily and Lizzy

A photo of you and me at the Christmas party

And a song that makes me think of you, called My Girl

We love you so much Emily and we are so proud of you because you are amazing and brilliant and beautiful and funny and kind.

Love Mummy, Daddy, Lizzy and Millydog

kiss kiss kiss woof