Hubby attended the PDA Society Parent and Carer Conference 2015 in Northampton today. (PDA stands for Pathological Demand Avoidance, which is a subtype of autism). He came back feeling so inspired and enthusiastic that he even agreed to write a blog post about the day (Hubby does NOT blog and does not usually share feelings so openly; today has clearly had a profound effect on him! 😉 )…
My expectations were blown aside today, my experience was so much more than simply developing my appreciation and understanding of PDA. From the privilege of hearing so many thought provoking messages and hope for the future from Phil Christie, a student and colleague of Elizabeth Newson (I wish he was our Psychologist- he gets my daughter despite having never met any of our family); to the reassurance that- despite all our daily struggles and lack of understanding from so many- WE ARE NOT ALONE; to Neville Starnes and Jane Sherwin’s fantastic presentations. What can I say? Both of them emotionally touched me, their journey’s will stay with me and I know that I wasn’t alone in finding inspiration in their words.
I found the entire day extremely reassuring that there are clinicians as well as parents and carers who truly understand, and can share experiences and guidance. Throughout the day I found myself writing copious amounts of notes… that was until Jane Sherwin’s and Neville Starne’s presentations, when I didn’t lift my pen once. Why was this? It certainly wasn’t because I wouldn’t have wanted to but because both of their stories not only captured my undivided attention but they have given me inspiration that I haven’t felt for years. I wish I had the chance to personally thank them both for sharing their personal roller coaster with all of us. Thank you!
If I had to pick three highlights of the conference it would be a tough choice but I will go with these…
· Jane Sherwin and Neville Starnes talking about their children (although in both cases I had to keep reminding myself that they weren’t actually talking about my daughter!!!)
· Neville Starnes reciting a light hearted blog post on clinical support
· Phil Christie painting a picture of developing understanding in the medical world
Key things from each of the speakers that I will keep with me…
· (PDA is) “like ASD but…”
· Difficult behaviours and need for control is underpinned by significant social exposure anxiety.
Dr Jo Clarke
· Solve the problem not modify the behaviour.
· Understanding comes before helping.
· Problem solving is collaborative and proactive.
· Kids do well if they can… doing well is preferable.
· Family environment- reduced demands (eg safety only), surround only with those who understand.
· You’re only human and its ok if you don’t cope with every situation perfectly.
· Take the lead from your child.
· Masking is different to coping.
· You as the parent are your child’s expert.
· You can take a PDA child to water but you can’t make him wash!!!!
I met so many wonderful people today and left feeling better equipped to support my family on our onward journey and with a new found appreciation for both the challenges my daughter faces every day but the amazing job my wife does as her full time carer. We are all human, but I honestly think that I found someone pretty superhuman. (Thank you Jane for reminding me!)
The theme of the day was what makes us stronger. During the day we had to write on strips of paper what makes us stronger to make a giant paper chain. I wrote on two, the first “my daughter” and the second “my wife”. But if I could write one more link I would add “days like today”.
Unfortunately I had to leave before the end but would like to thank all the presenters, the lovely people I met and the PDA society for not just a well organised conference, but a life enhancing experience. HUGE thanks to everyone involved.