I have reviewed a couple of books on Pathological Demand Avoidance (PDA) since I started this blog, but this time I decided to do it a little differently.
I usually write from the viewpoint of the adult, when discussing these resources, but I forget to really get the insider’s view.
So this time I decided to ask my seven year old daughter to contriubute her thoughts to the review and said that I would pass the control of the blog over to her!
I told her that people would much rather hear what she has to say about the book.
Her face lit up as she beamingly agreed that yes, she would be better at reviewing it than me.
She snatched it in her hands and grinned as she said:
“It’s my book this time – you don’t even have PDA!”
So here it is – our collaborated review of Me and My PDA (by Gloria Dura-Vila and Tamar Levi) with some of the questions I asked and the responses that she gave.
Did the book help her to understand PDA?
“I already knew about PDA but it helps me understand it more.”
She has always been left feeling extremely confused, wounded and emotionally broken after having a meltdown so this book was a great starting point to talking about that process.
A key difficulty I have found in the past is to find a resource that is friendly enough to introduce PDA to my seven year old daughter, but on a deeper level.
Early on I invested in many picture books about children with autism but she never connected with them.
She would disassociate herself with the characters and say “I’m not like that,” or “I don’t do that!”
This book has had us in fits of giggles because it describes her so exactly that it felt like it had personally been written for her.
She wanted to show “her readers!” the checklist of signs, that she identified about herself, when she is out of control:
She ticked nearly every one and added something else that I hadn’t thought about before, but spilling water on purpose is definitely one of the behaviours she could do in her state of ‘red mist.’
What did you learn about yourself that you didn’t realise before?
“I didn’t know I clenched my jaw.”
She thought about how she frowns her face when she starts to get unhappy and demonstrated what that looks like:
She suddenly focused on what her muscles were doing on the inside and realised that her jaw was stuck together.
I hope she may notice when this starts to happen that she is actually feeling anxious – something she might not have done without this type of self-help book.
She even labelled and drew herself when out of control:
I think the part she found most insightful was thinking about how there were often two voices in her brain – this was something she really connected to and hadn’t been able to verbalise previously.
“Like this morning when you tell me I can go to school – the voice in my head told me I can’t. It’s like there’s two people in your brain.”
She drew a picture of it and as a parent this resource really has allowed me to understand how she thinks:
We then talked about what it was that caused her that anxiety and she gave an example of when it happened but wasn’t able to identity an exact trigger:
“When we go to the park and I don’t really want to leave the house because I think it’s going to be bad, but I like it when I get there.”
We looked at what it was that could be bad but she closed up and said she wanted to stop – it was difficult for her to know what it is that suddenly concerns her and I always know to not push.
She will come to things at her own time.
This is the beauty of the book as it invites you in to use it as and when you choose.
It encourages the child/young person to have ownership and suggests to the reader that they know themselves better than anyone – they are their own teachers.
We picked it up again when she was ready.
She turned to me and said:
“I really do like that it lets you do a page or few pages and then you can do it again when you want to.”
Had the book been more demand-evoking then I’m pretty certain she would have avoided returning to it.
The style of writing is just perfect and has come from a professional who has worked with a variety of people with PDA – no assumptions are made and the emphasis goes towards every person being an individual.
Language is pivotal to whether someone with a PDA profile is able to access a service or not – professionals would benefit from replicating the invitational style of communication found in this book.
One of the questions in the book asked her if she found it difficult to do something if it is demanded of her, such as following a sign:
Yes, that’s me. Like when the sign at school says ‘Don’t run!’ then I probably do the opposite – it makes me run more.
If the child can use this type of resource to identify the challenges they face then it will give the parent the specific understanding of their individual child.
A fully researched and knowledgeable parent is the most advantageous to the child.
It enables us to advocate their needs better when we have the evidence to back up the challenges we see them facing.
She acknowledged that the main triggers for her anxiety were the changes to her routines and demands like getting ready for school or going to bed.
From using this book I have shared some evidence to the team working around her and requested that one of her drawings be added to her EHCP review paperwork.
I think this would help a parent when their child school refuses too (as many professionals find this difficult to comprehend) so having the child convey their struggles by themselves almost alleviates the pressure on the parent.
What did she think about how the book was presented?
The book is wonderfully illustrated which my daughter also identified too:
“This book is a bit better because I like the pictures. The person who drew the pictures is very talented.”
We talked together about how the illustrations depicted situations we experience on a daily basis which I think is why she connected to them so much.
She also acknowledged the ability to contribute her thoughts as the book has plenty of areas that the reader can participate in:
“I like drawing and writing about the things I’m good at.”
Her observation highlights how the book is appealing and approaches the disability positively by working through the challenges and focusing on the strengths.
That too serves it’s own purpose as it made her more curious to continue on.
This book is aimed at ten years and older but this review demonstrates that it can be accessible for children who are younger.
The resource is an important addition to any library on PDA and will definitely be something that we will keep returning back to for reference.
For further information and to purchase a copy of this book online – here is a link to Jessica Kingsley Publishers (JKP) where you will find a selection of published literature on PDA and this specific item.
To find about other publications on PDA here are some quick links to previous reviews we have done for JKP:
Collaborative Approaches to Learning for Pupils with PDA by Phil Christie and Ruth Fidler – link to review here.
PDA by PDA’ers (compiled by Sally Cat) – link to review here.
*Disclosure* No payment was taken for this review and all views are my own.