I'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.
- Join the SNJ Squad as a “Patron” and get exclusive content!Running SNJ takes time and money. As volunteers, we don't mind spending time making the site as useful as possible,…Continue reading »
- SNJ in Conversation: Why we need to talk about race and SENDThis episode of Special Needs Jungle 'in conversation with...' tackles the often overlooked issues around race, racism, intersectionality and disproportionality…Continue reading »
- SEND cuts campaigners in London tell their council: See you in (the High) CourtWith Ken Barlow, Waltham Forest SEND Crisis Parents being forced to throw themselves into the legal system in order to…Continue reading »
- Shots fired! Secretary of State in legal challenge over SEND Coronavirus changesThe relaxation to the duties on LAs to make the provision in EHCPs has left disabled children without the legal…Continue reading »
- Dear Prime Minister, not all education in lockdown is equalA letter to the PM from Lilia, a year 10 pupil who believes that not all education in lockdown is…Continue reading »
- It is a mistake to assume all vulnerable children are ‘at risk of harm’Coronavirus has divided Britain into those who are vulnerable and those who are not. But vulnerable means different things to…Continue reading »
- Campaign: Family carers deserve at least minimum wage for their 24/7 workWhen you care for a disabled child or adult, you are often not able to work full or even part-time,…Continue reading »
- Special Needs Jungle wins Your UK Parliament’s Volunteer of the Year Award!And now, among all the bad news, here is something pretty darn fabulous. We are thrilled to announce that Special…Continue reading »
- Celebrating #roarsome children with undiagnosed genetic conditionsIt’s Undiagnosed Children's Day. It is hard to believe that it was seven years ago that Lauren (now of SWAN…Continue reading »
- The SEND Jungle 2018: The year parents roaredIt’s been an incredible year in the SEND world, but not because the system has started to work better, or…Continue reading »
- Legal grey zone lets health body strip vital funding from disabled childrenDominic is 11 and now in his final year at a mainstream primary school. He is very happy there and…Continue reading »
- Is there meaningful accountability for illegal exclusions?Over the years Special Needs Jungle has frequently highlighted the unacceptable practice of illegally excluding children with special educational needs…Continue reading »
- Does child protection guidance discriminate against disabled children?Safeguarding has become such an integral part of the language we use about children that it is hard to remember…Continue reading »
- Post-Rochford, will primary SEND really improve?The best thing about going to SEND conferences isn't just having the opportunity to make sure that parent carer and…Continue reading »
- Edward Timpson and Jane Ellison: “Our reforms are boosting the life chances of children with SEND”As parent carers we often measure our successes in the little victories we achieve on a day to day basis.…Continue reading »
- My #Undiagnosed Day video to say thanks to those who get care right.I have three children. All three have an undiagnosed genetic condition. One is a wheelchair user, has feeding tubes, and…Continue reading »
- Work and the parent carer: a choice or a right?Today I am delighted to introduce Sarah Down who has agreed to write a guest post for us. Sarah is…Continue reading »
- Should Awareness Days Try Harder?Awareness day fatigue is a 21st century issue that has turned the the definition of supporting a cause into a…Continue reading »