About Renata

Renata BlowerI'm Renata Blower, co-director of Special Needs Jungle. I describe myself as a realistic optimist, which is helpful when you have three children all with their own mix of needs. My oldest child, Elliot, has high functioning Autism, ADHD, Dyspraxia, sensory issues and an undiagnosed neuromuscular condition. My daughter Lilia also has the same neuromuscular condition (mildly), Dyspraxia and is an amazing young carer to her two brothers and Dominic, my youngest child also has an undiagnosed neuromuscular condition which means he is physically disabled and has complex health needs.

Over the years my children have given me an incredibly amount of joy, quite a few grey hairs and a yearning for 8 hours uninterrupted sleep. They have also provided me with an unique insight into the inner workings of our Health, Education and Social Services. Having culminated years living on children's wards, been referred to multiple community professionals, and worked with an ever changing stream of disabled children's social workers I've seen the very best and the very worst of what Britain has to offer its most vulnerable children.

I have negotiated all my children through mainstream school, sometimes with success, other times not so much. I have experienced the joys of statementing, EHC plans, tribunals and a local authority that doesn't always follow the law. I now have one child in mainstream, one child in s special school and one child in an independent specialist placement paid for by the LA. 

I used to have the time to blog over on Just Bring The Chocolate, which led to many amazing opportunities, including meeting Tania and joining Special Needs Jungle. These days I spend my time split between working on Special Needs Jungle, sitting on a variety of steering groups including the coordinated care of rare diseases (CONCORD) study funded by the National Institute for Health Research, community and public health strategies, delivering coordinated care and strategic planning for SEND. I also sits on various advisory committees for children’s charities.

I have been lucky enough to have had a hand in successfully changing government policy so interventions are needs led and no longer diagnosis led, and creating the world’s first specialist nurse for undiagnosed children at Great Ormond Street Hospital with the help of the wonderful Roald Dahl's Marvellous Children's Charity.

I was also very involved with SWAN UK (a project run by Genetic Alliance UK which brings together families of children with undiagnosed conditions) in the early days and helped establish and grow the first online support community for families of undiagnosed children and spearheaded the very first undiagnosed children’s awareness day, including producing information videos that were shown in parliament.

You might also occassionally see me on TV or hear me talking on the radio or speaking at events.

In 2014 I was invited to become a Fellow of the Royal Society for Arts for my work towards improving services for disabled and medically complex children and I became an SNJ Director in 2016, after having been a columnist and team-member since 2013.

Renata and family
Renata with her family

 

 

Renata's Posts