About The Group

This is a group for parents and carers of children with PDA, or who suspect their child may have PDA.  We meet regularly in the Newbury or Thatcham area, to chat, ask questions and share stories, experiences and advice.

Its really tough and incredibly exhausting being a parent of a child with PDA.  In fact many professionals agree that PDA is the most challenging form of autism to parent.  So its so heartening (and uplifting!) to meet others who know what we are going through and we all benefit from talking, off-loading and supporting one another, as we navigate the complexities of life with PDA.  We also have a facebook group for general support or information sharing outside of meetings.  For more info on who runs the group scroll down.

Our Support Group meetings are very informal, we just chat over tea and coffee and bring whatever we want to talk about at the time to the group.  Many of us have toddlers or children that can’t manage to be in school due to their PDA, so we often meet at a venue with play facilities for children if we need to bring little (or big!) ones along.  New faces are always very welcome and we ask that only parents (or carers) and their invited friends or family attend, so that it is a ‘safe’ environment for us to discuss things with others who understand, without the fear of feeling judged.  So there won’t be any professionals there or anyone who isn’t involved in caring for a PDA child.

We now have a strong core of 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 .  We have members both from the local area and from neighbouring counties, and people dip in and out of the group as suits them and according to need.

Many people find that talking to others who know what its like parenting this condition has been by far the single most helpful thing they have done to help them on their ‘PDA journey’.  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 – and not to feel so isolated and alone.  I even find I often laugh a lot more when I talk to other PDA parents.  So I would really encourage you to get in touch if you would like to make contact with and 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 living with this condition.

Please note: the meetings are specifically for parents/carers and their invited friends/families only.  If you are an adult with PDA or have a professional interest in PDA, please get in touch separately by email – see the contact page.  Thanks!

Who runs the group?

My name is Leila and I run the group.  I’m a parent of a 9 year old boy with PDA, and I founded the group in January 2017, as I wanted to meet others in my area with a PDA child, and to offer support to those who suspect PDA.   I’m not an autism professional, just a mum with a lot of experience of parenting PDA.  I have read an awful lot on the subject, have attended many PDA training courses and conferences and am just very interested in keeping up to date on all things PDA, and passionate about doing the best by my family and improving my son’s daily life and his future.

I am also involved in the field of training on PDA, having done a bit of PDA training for parents and members of school staff in the last year.  From autumn 2018 I will also be partnering with Berkshire Charity Parenting Special Children to deliver some training workshops on PDA for local parents, as I have a professional background as a qualified Training Practitioner, before PDA came into my life.

I am also an active member of the West Berks Parent Carer Forum (WBPCF) Steering Group, which is a fab group of parent-carers who work with our Local Authority in all areas of Health, Education and other relevant services, to have our voices heard in improving the experiences of SEND children and their families in our area.  I’d recommend it to anyone who wants to do something important and exciting locally to make a difference in the SEND arena, inputting into the heart of Local Authority SEND decision making.   Join the WBPCF parents Facebook Page here to keep informed on what is going on in SEND locally in West Berks.

In addition to running the meetings, I also send out / forward on information I receive of anything relevant happening in the world of PDA, both locally or nationally – be it local training courses or conferences, TV or radio programs featuring PDA, latest news on PDA research or diagnosis, blog posts of interest, or drawing attention to what local service providers might be doing that may help our families.  If you’d like to join my mailing list to receive these, or just want to make contact and get in touch, please email me at leila@westberkspdasupportgroup.co.uk – I’d love to hear from you.

I should add a disclaimer 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, its not a paid role and is not affiliated to any other body.  So whilst I’ll make every effort to get back to you ASAP if you contact me, please bear in mind that I fit running this group around 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