I’m mum to three adult children and my journey into the world of disability started when my son 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 he gets the life he deserves. 

I’m passionate about the work I do at OxFSN, 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 my son as people first, not “special” or “disadvantaged” but as people with the same needs and rights as everyone else.  

Like many families, we have faced our share of challenges throughout our journey. Each obstacle has taught us something new and valuable. Although it may sound like a cliché, “knowledge really is power” Gaining understanding and insight has been immensely empowering, enabling us to navigate the path ahead with increased confidence and resilience. 

Throughout my journey, I have been fortunate to receive invaluable advice and support from fellow parents. Their guidance has played a crucial role in helping me navigate the complexities of raising a child with severe learning disabilities and it was this that prompted me to help set up OxFSN. I now manage the charity in an attempt to do the same for other families. 

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 run the Special Educational Needs and Disabilities Group in West Oxfordshire as well as being a trustee at Yellow Submarine Charity and Alexandra House of Joy. 

Trivia: Tea or coffee? Tea every time – I am from Yorkshire!! 

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…

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 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 an Independent Mental Capacity Advocate (IMCA) doing statutory advocacy as required by law.  I am also on the Social Care Coproduction Steering Group for The Social Care Institute of Excellence (SCIE). 

I’m a mum to a wonderful 2-year-old son with complex disabilities, whose challenges stem from complications during pregnancy. The day he was born, my whole world changed.

I grew up around disability - my sister has autism spectrum disorder and learning disabilities - and I’ve spent much of my life in support work roles, but nothing prepared me for the shocking realisation of how much complex jargon and system knowledge parents are expected to learn. I often joke that, since his birth, I’ve had to become a doctor, a lawyer, and an engineer just to navigate the world of SEND and provision. I’m still learning every day, and I hope to share my journey alongside other parents.

That’s why I focus on the early years - because the isolation at the beginning is often the hardest, and there’s no reason we should face the most challenging time in our lives alone.

The goal of the Early Years Project at OxFSN is to fill the gap in Oxfordshire for families in those early years, so parents don’t have to carry all the mental heavy lifting by themselves. My son is a wonderfully happy, smiley, sweet, and cheeky little boy and it is a privilege to be his mum and to use my knowledge from being his parent to help others through my role at OxFSN.

I’m Naz, a former doctor and the parent of twin boys with Williams syndrome. In 2021, one of my sons died, marking a profound turning point in both my life and career. I made the decision to step away from medical practice and focus my work on supporting families through the early years following a diagnosis, and on helping children access the best possible opportunities. 

Through my own experiences, I saw first-hand the barriers families with medical and additional needs face. This led me to set up the not-for-profit organisation Cafelias, and through this work I came to meet OXFSN — a community that has become the family I never knew I needed. My work is driven by empathy, lived experience, and a commitment to ensuring families feel supported, informed, and never alone.