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!Tell me more... We’ll never charge for you to read articles on SNJ so everyone can access information whatever their…Continue reading »
- The Family Experience of PDA – Book Giveawaywith Eliza Fricker, SEND parent and illustrator Eliza Fricker is an illustrator and designer, who is also the parent to…Continue reading »
- Growing up disabled: Puberty, privacy & positivity with Siena Castellon and George FieldingAround one in five people in Britain live with a disability. That's really quite a lot of people, all who…Continue reading »
- Maths for Life – *Giveaway*A lot of children struggle to engage with maths taught in 'traditional' ways, especially those with additional needs. Karen McGuigan…Continue reading »
- Invest More in Social Care Support for Disabled Children: A Mother’s Open Letter to the Chancellorwith Stephen Kingdom, Campaign Manager for the Disabled Children's Partnership The Disabled Children’s Partnership (DCP) is asking the public to…Continue reading »
- The Cracks That Let the Light In – Book Giveawaywith Jessica Moxham Today we're offering a free copy of a new book written by Jessica Moxham, a parent carer…Continue reading »
- Emotional Wellbeing in Parent Carers – Day by Day book giveawayAs a parent carer looking after our own emotional wellbeing can be a challenge at the best of times, this…Continue reading »
- It is time employers realised the benefits of employing young people with learning disabilitiesEducating businesses on the benefits of employing Neurodivergent people and those with Learning Disabilities is key to making the changes…Continue reading »
- The virtual workshops helping disabled children and their families with Dogs for GoodA new online service from UK-wide charity Dogs for Good, which supports families with an autistic child, says the pandemic…Continue reading »
- Protecting Parents from False Allegations of Fabricated or Induced Illness (FII)False allegations of Fabricated or Induced Illness (FII) are on the rise in the SEND community. Parent and Carer Alliance…Continue reading »
- Top Teaching Tips for Children with SENDThis post is sponsored by Tutor House As lockdown continues and many parents are still struggling to teach their child…Continue reading »
- Why is He Still Here? Book giveawayToday we're offering a free copy of a new book written by the youngest author that we have featured so…Continue reading »
- Changing lives through BocciaOpportunities for disabled young people to participate in sport can be limited, either because expensive specialist equipment is needed or…Continue reading »
- How do you develop a meaningful pathway to employment for young people with SEND?With Roseanna Gooder - Lead for 16-19 Pathway, Work Related and Vocational Learning at Swiss Cottage School, Development and Research…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 »