I’m mum to three adult children and my journey into the world of disability started when my son Guy was diagnosed with severe learning disabilities in 1991. Since then I’ve made it my mission to know as much as possible to make sure Guy gets the life he deserves. Like many families we’ve had our fair share of battles along the way but I’ve also learned a lot. It’s a bit of a Cliché but “knowledge is power” and it’s been very empowering.
I’m passionate about the work I do, which is all about getting a good life for people with learning disabilities by informing, inspiring and involving their families. I’m also passionate about person centred approaches and the need for everyone to see people like Guy as people first, not “special” or “disadvantaged” but a lovely young man who has the same needs and rights as everyone else. I’ve been inspired by other parents myself. Hearing their stories, finding out what they’ve achieved has helped me enormously and has shown me what is possible. I work with OxFSN in an attempt to do the same for other families.
Family Advocate Support & Embolden Project
I’m primarily a Mum to 4 adults the youngest who was born with severe learning disabilities, autism, sensory integration disorder and dyspraxia.
We moved back to the UK when my daughter was in her teens and it was through my navigation of the complex children and adult social care system that I came across OxFSN. I signed up to do a Family Champion Course and learnt so much about how to support my daughter that I have now become a staunch advocate of person-centred planning and use it to make sure that my daughter gets to live the life she chooses and deserves – just like her older siblings.
Through OxFSN I have been able to use the knowledge I have acquired to help support other families who are facing similar situations. Being a parent of a child or adult with a learning disability can be a daunting and often lonely situation to be in and I feel strongly that no one should be left to navigate the system by themselves. At OxFSN we feel every person with a learning disability deserves to live life to the full and that this can be done if the family also has good support.
As well as working with OxFSN on the Embolden Project and Family Support I am part of the Co-production Board at Oxfordshire County Council helping to improve services across Health and Adult Social Care. I run the Special Educational Needs and Disabilities Group in West Oxfordshire as well as being a trustee at Yellow Submarine Charity, Alexandra House of Joy and Witney Town Charities.
Trivia: Tea or coffee? Tea every time – I am from Yorkshire!!
Family Advocate Embolden Project
I have two children. My son has Autism with severe learning difficulties and my daughter is currently working as a model maker in the film world.
My son was diagnosed at 2 years and two months because he wasn’t talking, pointing or giving eye contact and since then we have been on a very long road trying every therapy possible in order to help him. He still doesn’t speak but uses Augmentative Communication which is helpful but not yet the magical window into the world of communication for him.
I came into contact with OxFSN by attending some of their excellent courses, first the Person Centred Planning one and then the Family Champions Course. Both extremely informative and useful.
More recently I felt I would like to help other families in supporting them on their journeys with their children/ relatives. I have had a lot of experience in fighting for provisions for my son – have been to Tribunal twice, and am probably known as a ‘difficult Mum!’ but it is necessary in order to get what you know is best for your child/relative. I joined OxFSN in November 2022 and am currently a project worker on the Embolden 2 project.
Trivia: I love mowing the lawn which I agree is rather odd…
Family Advocate Support
I am the mother of four adults, one of whom has Downs Syndrome, Autism, severe learning disabilities and associated health issues.
We have lived in Oxfordshire all of their lives navigating special needs school, tribunal to a residential college and moving into supported living which so far is successful.
I started my interest in SEN by being on the Learning Disability partnership board where I came across the Family Champions course run by OXFSN. I used my learning knowledge to support my own child through the process for going away to college and into supported living being able to live their life as independently as possible.
Through that course I have become an advocate for families trying to navigate their way through the social care system and the constant challenges faced by families.
As well as supporting families through OXFSN, I work as a Independent Mental Capacity Advocate (IMCA) doing statutory advocacy as required by law. I co-chair the Coproduction Board for adult social care, Oxfordshire County Council and am on the Social Care Coproduction Steering Group for The Social Care Institute of Excellence (SCIE).