The group was set up by me, Leila in 2017 and currently (2023) runs mainly through our facebook group * We used to meet up in person regularly but this became difficult for me to organise around my PDA son’s needs so meetings are more sporadic now – but there’s nothing to stop anyone in the group suggesting and organising one via facebook!
Please see the ‘about me’ page if you’d like to know more about me personally and my family’s PDA journey so far.
Who we are
We’re a group for parents and carers of children either with a diagnosis of PDA, or who suspect their child may have PDA, who live in or have a child attending a school within the West Berkshire. We have few members from neighbouring counties too, but the majority are in and around the Newbury / Thatcham area and surrounding villages.
It’s really tough and incredibly exhausting being a parent of a child with PDA, with many professionals agreeing that PDA is the most challenging form of autism to parent. So it can be a lifeline to meet others who understand exactly what its like and we all find we benefit from sharing experiences, local knowledge and generally supporting one another, as we navigate the complexities of life with PDA. I personally have learnt so much from others – and its so heartening when you get that feeling that someone else really understands what its like… not to feel so isolated and alone.
We now have over 100 families registered, with the group attracting new members all the time, and I’m delighted to say that many of us have formed valuable new friendships through the group, both from meeting face to face and on facebook. I’m also pleased to say that we have a lovely bunch of people in the group and the empathy and kindness that we see in the posts on the facebook group is heartwarming – something I am keen to maintain and ask all participants to only post supportively to others – or not at all.
Join us!
Please do join us on Facebook* if you’d like to chat to other parents/carers who are probably in or have been through a similar situation and all the same thought processes, frustrations and day to day hardship of parenting this condition. Facebook is also the way to find out about any face to face meetings the group is organising if you want to meet others from the group in person.
*I apologise to non-Facebook users – I’m not a fan of any social media personally – but its just a very useful means to an end for running a group like this and communicating with people easily – email is very time consuming by comparison. So reluctantly I have had to go down this route for the sake of the group and it works really well. Some people join under a different name and solely use facebook for accessing information and posts from groups like this one, and you don’t need to share any personal information and can control privacy settings so there are ways to make it work, but I apologise that this doesn’t work for everyone.
Disclaimer
I should add that this is not a charity or any form of official organisation. I run the group on a purely voluntary basis, because I want to, it’s not a paid role and is not affiliated to any other body. So whilst I’ll make every effort to respond promptly if you contact me, please bear in mind that I fit running this group around my work and everything else in my life, so sometimes I may not be able to be as prompt replying to messages as I would like to. Thanks for understanding.
Leila