Wednesday, 18 February 2015

This is our PDA story (week 5)

Stephs Two Girls February 18, 2015 #PDA, #sharewithme, ASD, autism, behaviour, our PDA story, Pathological Demand Avoidance, PDA, This is our PDA story

Welcome to week 5 of 'This is our PDA story'.

I've been opening my blog up to other families to share their experiences of living with PDA (Pathological Demand Avoidance), and I hope I can continue to share in future weeks. Previous writers have been so overwhelmed by the messages of support, so thank you to everybody who has read and tried to understand.

This week it's the turn of a Mum who also has a young girl with PDA, and who I feel shares my positive outlook. There are huge up and down times for all of us (we often talk about the 'rollercoaster') but it becomes easier to live with when you accept what PDA is and use the right strategies to help.

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I have read many posts about PDA and have read many parents that are at their wits end, but for me I see things differently, it may be unconventional but hey so is PDA! I try and look on the postive side rather than the negative, as many children with PDA already focus on that side too much so why add to the already out- weighed scales?

My daughter showed signs very early on of being "different" she was a very stressed baby, very clingy and barely ate or slept, we went through countless trials and tribulations to stop her suffering and also ease our own. 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. We had many issues that she didn't like such as: crowds, noise, food touching each other, certain clothing was too itchy. We thought she was a gifted child (she still is!) so rather than fight to make her act the norm whatever that is, I'm embraced it, I adapted to her needs, so she never went to bed at 7 pm or 8 pm she got to stay up with us and have more family time, when she was stressed we did creative things, baking , crafting and painting, we built many many dens. We had bad days but they were more outweighed with good.

My daughter Chloe, was so friendly she loved her friends (maybe a little too much, with all the hugging) at her age it was acceptable though, school showed signs of stress for her, she found it incredibly overwhelming and her behaviour began to change, she would become violent, and upset at school but mostly at home. She refused to do work at school and (of course it was too easy for her as they were doing things she had done since she was two) when we finally got teachers to realise that she needed more help and work, I had decided that maybe she needed a diagnosis (deep down I always knew) I kept a diary, not every day just when something was noteworthy. We were lucky with timing and people to contact, I had a health visitor visit (my last one before she was 5) she saw Chloe and contacted a friend, another health visitor who had a son with aspergers, after witnessing Chloe who was ill that day and stressed and was sorting toys into colour and shape, she gave me a number to ring, we were seen at CAMHS quite quickly and thanks to my notes, and Chloe's behaviour there we got a diagnosis of Autism with traits of PDA at the age of 5. Reading other posts I know I am very lucky to have that. Chloe started getting upset about everything in school, her friends and the politics of friendship, and the school were not that helpful apart from one teaching assistant who actually got it!

By the time Chloe was 7 we were moving home so we moved schools as Chloe was so unhappy, this school actually was very helpful but it just wasn't enough, she had no one-to-one, and it looked like a battle that would of been hard and exhausting for all of us, I grew tired of having to be at the school for over an hour (yes) to get her to go through the doors, to have phone calls, to walk up to the school gates to find a teacher waiting to tell me how she has done not very much work or that she had a bad day and got upset again. It brought tears to my eyes that she was suffering so much. I realised that she needed a safer environment, someone who understood her and take away all the daily demands. That person was me! Thankfully I run a small business from home and had just left my part time job so I could be flexible for her, my husband although not entirely won by the idea, he was supportive. My business will have to change around her needs. But why battle against it? Why do people fight to push a square into a circle? (It will never fit in!) So for us, we have a new way of living, we have had a few wobbles as we've just moved into a flat (no stairs!!!! Horray!) de-registered Chloe from school and starting a new business all of which makes PDA go wild and loopy! But I know these changes are going to help her, support her and make her a happier person and that's all I want from her is to be happy! No other pressure there! She's allowed to fidget and pace, and walk in circles, she's allowed to make more dens and hide, she's allowed to learn the way that makes sense. She is allowed to be her! Xxx

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To read more about this condition, please use the menu at the top of my home page, or click on What is PDA?.

For previous guest posts in this series please see Week 1, Week 2, Week 3 and Week 4.

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?