Tuesday, 2 April 2019

Our PDA Story {week 45} Positives of PDA

As it's World Autism Awareness Week, or Month, I decided to do a special edition of my series called 'Our PDA Story'. The series has been running over four years now, and the idea behind it initially was to explain about all the different ways which the Pathological Demand Avoidance profile of autism might present, and to help others feel less alone. 
our PDA story logo badge
During that time many families have shared their experiences of living with PDA and understandably we've heard a lot about the struggles which have been faced. I think it's fair to say that most of the challenges have mostly been due to the system or to living in a society where there are still too many people who have not heard about PDA. 
What I wanted to take the time to do now, is to remind everyone that there are also positive sides to PDA. Of course we can all rave about our own children because we love them, but being positive may seem more difficult when we, and they, are facing a lot of challenges in everyday life. Despite their struggles though, these children generally have qualities which shine through.

Sasha amazes me in some way nearly every single day. Over on my Facebook page I wrote about a time recently when I went to collect her from school. She was in the little garden attached to the ‘pick up’ room; most of the children wait inside but Sasha loves doing her own thing outside in the garden and I have to go out and find her there. She’s usually running around, happy in her own little world, but this day she was standing by the tree, getting angry with one of her classmates who was repeatedly thrashing the tree. 
sasha holding new buds in hand
When I went out to her, she told me that he was annoying and it wasn’t fair because the tree had new buds, so it was vulnerable. She held one bud in her hand and gazed at it adoringly, saying ‘it’s new and gorgeous and precious.’ 

I have been amazed and so proud of the way Sasha has reacted to certain challenges of late. She is definitely maturing and getting to know herself better, and she often shows great empathy and understanding for others. She's extremely witty and entertaining and she has begun to appreciate some of her own talents. I was thrilled recently when she made this picture at school and asked me to share it:
hand drawn anime picture
and then she followed that up by creating this one at home on the computer!
anime picture of girl
I also wrote recently about how Sasha has created books and YouTube videos and she seems to be on a roll, enjoying life. Her enthusiasm for what she loves is infectious. The words which spring to mind about Sasha and many others with this Pathological Demand Avoidance profile of autism are charming, affectionate, sociable, chatty, witty, imaginative, creative, passionate and determined.

More positivity now then - the following people are all kindly allowing me to share with you what they love most about their children with PDA.


**********

Riko, an adult PDAer who writes a blog at Riko's PDA Journey, has three children. She told me that her kids have an amazing sense of humour, unique to each of them. 'Polar Bear is so sarcastic and witty that he can bring anyone down with a well-timed one-line punch. Monkey acts the clown, recently he has been playing April fool's jokes on us, he's caught me out a few times now. and Ton's laugh is so evil it's brilliant, if you trip up near him his laugh will have you laughing along too, it's so infectious.'

Notes on PDA told me that 'there’s so much more to our Little Miss M than the PDA features which define her autism spectrum profile but being a PDAer is a big part of who she is and the features which have brought her such difficulties have also brought her strengths and qualities which we greatly admire. Everyday things may be hard for her to do but given freedom and the right environment, she can do amazing things instead. She may fear uncertainty but knows what she wants with absolute certainty and has the courage of her convictions. She's creative, resilient and strong and is my greatest teacher and inspiration'

Mel, who also writes a blog (Love PDA), says the following of her girl 'my daughter lights up a room when she is comfortable and in control. She has an infectious energy that others are drawn to. After being in her company, one feels like they have been taken on a journey to another world and can't quite put their finger on what just happened. Anyone who is lucky enough to know her, has been gifted.'

Eliza, daughter of Lindsay who writes Peace with PDA, is aged seven and told her mum that 'I like that I can be really different to other people and unique! I also like that I can think in different ways.'

Becky who writes at PDA Bubble says 'my daughter feels and experiences life extremely deeply and can often find things most of us take for granted difficult to access. If something strikes a chord however it will be embraced and absorbed whole heartedly and the resulting euphoria, smiles and laughs are truly magical to behold.'

The mother who writes at Pathological Demand Avoidance: PDA - A Profile of Autism explains that 'my son has the most caring and loving heart and is deeply empathic. He shows his love for both of us (Mom and Dad) with such depth of feeling through the expressiveness of his face and the way he throws his arms around us. He feels connections very deeply too, like when he walked alpacas and then cried when we had to say goodbye; because he was going to miss them so much. I think of these things as being a reflection of his good heart.'

Jean says that what she loves about her grandson is his 'wealth of knowledge from watching YouTube etc. He never ceases to amaze me with things he knows. His funny dancing copied from Fortnite. His love of animals.'

Debbie wrote that she loves 'our 13 year old daughters spirit, insight and perception, her sense of humour, her ability to keep everyone on their toes and enforces change around her, how she manages to keep going despite massive challenges, her loyalty to friends, her instincts to connect with animals and her ability to take amazing photos- sadly all these things don’t get seen and measured in school .'

Linzi explained that 'Charlie who is ten, taught himself entirely to read when he was seven. He understands huge complicated words along with correct context. He has the funniest sense of humour and can recite jokes usually in an American accent. He is complex but amazing.'

Lynne says of her nineteen year old daughter Kara that 'she has taken on board her diagnosis, learning all she can about for herself but also to act as an advocate for PDAers. She's working on ways to work from home to accommodate her personality, she fosters cats for the RSPCA, spent two weeks doing two hourly feeds for five kittens who are now all healthy because of her incredibly strong will. She's setting up a snail rescue as loads of the African snails are being abandoned. She's sorting out support for her to return to college in September again with the aim of supporting others experiencing difficulties. She has retained her ability to laugh at herself for the daft things, her strength of will, her ability to bounce back after setbacks, her articulation, her generally warped sense of humour and her anger over any kind of injustice in the world. She's just amazing.'

Sarah says of her son Leo, who is eight, 'he has the most amazing sense of humour! I defy anyone not to be enamoured by his wit and wonderful way of viewing our world. His ability to reel people in and hold them there is priceless. His imagination is his greatest asset and I love the sneak peaks I get into it. I have also grown to love his pure, unadulterated honesty.'

Mum to Juliet aged five says 'Juliet's special interests are birthdays and holidays. If you are going to obsessively talk about something then these are two brilliant things to choose! Juliet only shows affection on her terms so if she gives you a hug you know she really means it.  That is a special feeling.'

Going back to some of the earlier 'Our PDA Story' posts, there are positive comments littered throughout, even through tales of tricky times. In Week 1, the mum writing says of her 11 year old boy '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!' In week 2, the writer was talking about her school-aged girl: '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.'

The Mum in week 5 had a very positive outlook and wrote about her girl that 'when she was two her intelligence levels were far more advanced than those around her, she knew all the names of the body parts and could say the alphabet forwards and backwards, she could complete her shape sorter accurately in seconds, I could have a full on adult-like conversations with her that would flabbergast my friends.' In week 11, the writer describes her daughter as having 'a wonderful character and a quick wit and we enjoy spending time with her.'

I'm going to leave you with two amazing videos. First, a video made by Ben who is 12, for his mum on Mother's Day. When I saw this I asked if I could share because I thought it was so clever and creative, and the love clearly shines through.

This next video was made by a young girl who has a YouTube channel, called Chloe Me Just Me. She identifies as having PDA and in her video, she talks about what it's like to have PDA and I have to warn you, her laugh is infectious!


**********


Thanks for taking the time to read. Comments are much appreciated, and sharing on social media could help get these posts to people who have still not heard about PDA. The PDA Society website has a huge range of information about Pathological Demand Avoidance.

For more reading about what Pathological Demand Avoidance is, please see my page 'What Is PDA?', and for an idea of how to help please read Strategies For PDA

Sometimes PDA can be misdiagnosed as ODD (Oppositional Defiant Disorder) but there is a definite difference between the two conditions. My explanation can be found here in my post the difference between PDA and ODD

A variety of other experiences of living with PDA can be read using the link Our PDA Story series

If you feel up to sharing your own experiences with my readers to help spread understanding (this can be anonymously), please email stephstwogirls@gmail.com.




To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?




To follow me on other social media channels, you can find me at the following links or click the icons below!


Email Me Subscribe Bloglovin Twitter Facebook Google Plus Pinterest Instagram YouTube

11 comments:

  1. Lovely positive post Steph x

    ReplyDelete
  2. ... and the video from Chloe is EXCELLENT!!

    ReplyDelete
  3. Lovely to read a positive post...love the part where Sasha showed how much she cared about the tree and the new buds growing x

    ReplyDelete
  4. Really lovely comments and so great to highlight. I love Mel's description from Love PDA about her daughter taking people on a journey, it's a description that fits my youngest daughter and really resonated with me x

    ReplyDelete
    Replies
    1. Yes! Not one we expected or knew anything about beforehand, but a very exciting and interesting one :)

      Delete
  5. Wonderful celebratory post, so much joy, love and creativity here! Have watched the videos as well now and they are all fantastic (in their very individual ways) xx

    ReplyDelete
    Replies
    1. Glad you enjoyed them all! You can learn a lot from videos I always think x

      Delete
  6. I love this, so important to focus on the positives

    ReplyDelete

Go on, leave me a message, make my day! I love hearing from other people...

{Linkwithin}

Related Posts Plugin for WordPress, Blogger...

Subscribe