I'm Renata Blower, a Director of Special Needs Jungle. I describe myself as a realistic optimist, which is helpful when you have three children, two of whom have quite complex special needs. My oldest child, Elliot, has Asperger's, ADHD, Dyspraxia, sensory issues and an undiagnosed neuromuscular condition. My daughter Lilia also has the same neuromuscular condition (mildly) 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'm is also negotiating all my children through mainstream school and have experienced the joys of statementing, EHC plans, tribunals and a local authority that doesn't always follow the law. And so, faced with all this experience, and knowing other families were also struggling, I decided to change the world. At least I will as soon as I've had got the children to bed.
It all started with my blog, Just Bring The Chocolate, which led to many amazing opportunities, including meeting Tania and joining Special Needs Jungle. Then my campaigning became more focused, working with Local Authorities, Ministers, Health officials and those working directly with disabled children to highlight the need to deliver needs rather than diagnostic led care, the importance of listening to patient experience, working effectively with families and reforming safe guarding advice.
I'm an advisor for SWAN UK (a project run by Genetic Alliance UK which brings together families of children with undiagnosed conditions), Roald Dahl's Marvellous Children's Charity and am a parent advisor for UCL's clinical psychology post graduate course. I'm also on the steering board of my local parent carer forum, I'm a SEND governor in a mainstream primary school and a parent representative on many ongoing research projects.
I never take no for an answer and after years of trying and a lot of lateral thinking I've recently brought about the creation of the world's first specialist nurse for undiagnosed children at Great Ormond Street Hospital. I'm already working on a nurse for Rare conditions and hope to see both of these positions adopted nationally by specialist hospitals along with an improvement in care coordination for these children.
I also hope that I'll be able to spend less time dealing with statutory services in an effort to try to convince them to meet my children's needs so I can get back to writing which I've had to put on hold and miss terribly.
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, aafter having been a columnist and team-member since 2013.
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 »