Practical Help in West Berks
There is no shame in admitting you might be struggling and need additional help. Here you will find links to some of the services that we are extremely fortunate to have in West Berks – I know in many areas no such things exist.
Local Support Services for ADULTS are listed at the top, and those for our CHILDREN and young people are below.
For SEND legal help contacts and for services that help with schooling and education issues scroll down to bottom of this page.
Counselling Services (for parents and carers)
SNACS (Special Needs Advice and Counselling Service) – For those parents who live in West Berks whose child has a special needs diagnosis, there is the fantastic Newbury-based SNACS who I can’t recommend highly enough. They know all about PDA, in addition to a wide range of other special needs and are able to offer excellent FREE professional counselling sessions and other advice or coaching to families with a child with a diagnosis, as long as you are living within West Berks. You can self refer direct to them without seeing a GP first.
Newbury Family Counselling Service – they are based in Newbury town centre and offer a FREE professional counselling service to parents/carers who are struggling with emotional difficulties and/or the stress of parenting. They also have an Ofsted registered crèche available to care for children while parents/carers are in counselling. I have heard fantastic reports of this service from other special needs parents. As with SNACS, you can self refer without seeing a GP.
Talking Therapies (Berkshire) – this is the NHS free counselling service and its open to anyone in the area who needs it, for whatever reason – anxiety, depression, stress, phobias etc, caused by all sorts of things. They offer professional telephone counselling as well as face to face. Again I’ve heard good reports and you can self refer without seeing a GP first.
For counselling services FOR YOUR CHILD see the ‘Help for Children and Young People’ section below
PDA / Autism Training and Coaching Providers
Parenting Special Children (PSC) – this excellent Berkshire-based charity runs a series of professionally delivered FREE short courses at various locations across Berkshire that can help families both pre and post diagnosis with PDA, Autism and ADHD. They are one of the few services I’m aware of that can actually offer something useful to families at the pre-diagnosis stage of autism, which is often the most desperate and difficult time of all for many parents (most services are only accessible post-diagnosis). They also offer a one-to-one support service plus courses around SLEEP issues. From autumn 2018 they are introducing new workshops specifically on PDA, with me (Leila) delivering the sessions. I have a background in professional training delivery and of course much experience of parenting PDA.
Side by Side Coaching – they offer both PDA-specific training courses and individual coaching, both online and face to face for PDA parents, run by trainers with personal experience of PDA in their own families. Although not local to West Berks, coaching for parents is available over the internet by Skype (or similar).
The PDA Society – again they are not local to West Berks but they do run PDA specific training courses at various locations around the UK at different times each year. Some may not be too far away if you are prepared to travel, so it may be worth checking out their schedule of what is coming up. They also run a conference on PDA every two years – the next will be in 2020.
NAS – they run an annual PDA conference that changes to a different location around the UK each year.
If your child or young person has had an autism diagnosis (privately or via CAMHS / NHS) and you live in West Berkshire, then you are also eligible for the support services and training of the West Berks Autism Advisory Team, funded by the Local Authority. Many of you will already know the fabulous Melissa Hutchings (Autism Advisor for Families) or her colleagues Lesley Botchway and Ava Menzies – all three are fantastic at what they do. Its worth contacting Melissa if you haven’t heard from her yet (but due to funding she can only work with families who have had a diagnosis) as she is able to visit families in their homes, can invite you to autism-specific training courses (which I highly recommend, even if they are not PDA specific, as I learnt so much of value from attending that helped me and my family). Melissa and the team are well informed about PDA. Contact Melissa by email at LearningSupportTeam@westberks.gov.uk
Finally, Yvonne Newbold runs some excellent workshops for parents who are experiencing SEND Violent and Challenging Behaviour (VCB) as a result of their child’s PDA or autism – again not local, but if of interest and you can travel, these are available in London and elsewhere – click here for more info (see also the paragraph below to learn more about VCB)
Other Local & Online Support for Parents / Carers
Obviously(!) there is the West Berks PDA Support Group – whose website you are currently reading. If its face to face contact with other parents who know what PDA is like that you are after, then do try and come to a meeting, as we discuss all manner of issues very informally and in confidence, and you can ask anything specific you want to know. Making friends with those who are in a similar situation can be a huge source of support and comfort and help you feel less isolated and much better generally. And once you’ve made friends you may find yourself meeting up with them outside of group meetings and maybe even introducing your children or wider families to one another – PDA children often get on surprisingly well together! We also have a Facebook Page for the group.
If you live nearer to Reading than Newbury, there is also the Reading PDA Support Group on Facebook, led by my good friend Vanessa, and they meet from time to time aswell and I often attend, though its primarily a Facebook group – find it here or search on Facebook for PDA Support Group Reading.
If you’re on Facebook and want to hook up with other PDA parents then there are any number of Facebook groups – The PDA Society has a list here. Obviously none of these are local to West Berks but it doesn’t matter because they are 100% online.
If you’d like to join a very supportive online community of other parents of autistic children (including PDA), one useful community you may want to investigate is #UNIQUEANDSUCCESSFUL: The Community (free) or #UNIQUEANDSUCCESSFUL: The Membership (fees apply). Both are Facebook groups set up by the brilliant autism teacher and mum Victoria Hatton who I mention on my Useful Resources Page as author of ‘Talking Autism: Parenting your Unique Child’.
As Victoria is so helpful and positive about PDA you may find her groups above worth looking into – and if you can afford to pay for the membership option I would highly recommend it as the support from others is as valuable as the input from Victoria. I was a member for a while and found it to be a very inclusive friendly group of sympathetic fellow parents, and each week Victoria churns out helpful podcasts and practical suggestions, hosts a zoom-room chat with her members and offers bespoke support to individual parents in their situations. She has much experience of successfully teaching PDA children in the classroom, is very positive about PDA and also knows what it is to parent a daughter with Aspergers. She is passionate about sharing her experience of both roles to help others benefit. She is an endless source of ideas and encouragement and wants to save you the hard work as she’s done it all already – everything from advice on diagnosis to EHCPs to strategies!
If you’re dealing with Violent or Challenging Behaviour (VCB) as a result of your child’s PDA this can be incredibly difficult to live with, and you may feel you can’t cope any longer with the stress of it, not to mention the damage sustained to yourself, siblings, other family members or your property / home. I would highly recommend the counselling services above and also the Behavioural Intervention Team (see below) if you can get your school to refer, or you may find it helpful to join Yvonne Newbold’s Facebook group ‘Breaking The Silence on SEND VCB’ Support Group. See also Yvonne Newbold’s website on VCB and for dates of her excellent courses on this subject.
Help for Children and Young People themselves
Emotional Health Academy (EHA) – a West Berks Council service that is available through some schools and also on a self-referral basis, and can be accessed irrespective of whether or not your child has a diagnosis – or whilst you are on the CAMHS waiting list. The EHA is a rare service that will actually work with the children rather than the parents. However, they require the child/young person to be willing to participate in order for them to be able to work with them, and obviously this can be a real stumbling block for many PDA children.
Behavioural Intervention Team (BIT Team) – we are lucky in West Berks to have a fantastic team of professionals, funded by the Local Authority, who can help or support children who may be struggling with behavioural issues either in school or at home. They can work with pupils themselves directly if appropriate, or support them indirectly by working with their school staff and/or parents. However you will need a referral from your child’s school to access the team, and the service is only available to those living in West Berks who have a child at a maintained primary or secondary school (not Early Years).
Time to Talk West Berkshire is an independent charity providing FREE confidential counselling services to young people in need, aged 11 to 25. They are based in central Newbury and the service is available to SEND children themselves (if they can be encouraged to attend – not always easy with PDA…) or may be of help to a sibling or close friend who is struggling with their brother / sister / friend’s PDA (or any other issue for that matter).
Legal Support and getting help with School / Education matters
Help with school – you can also contact your local SENDIAS (available nationally – google it to find your nearest one if you’re not West Berks). They are able to advise on lots of different matters including education, and may be able to attend meetings at school with you, if you need additional support or feel you aren’t being treated fairly. They can also help with EHCPs (Education, Health and Care Plans).
Special Needs Lawyers – if you need help over a particular issue you can contact IPSEA by booking a call-back via their website, or SOS!SEN who are also able to advise on matters of law, both are charities who provide this service free of charge. They aren’t local as such but are just a phonecall away. I highly recommend both having heard a talk by SOS!SEN at this year’s PDA conference, and having contacted IPSEA myself, they were extremely professional and incredibly helpful.