Renata Blower

Campaigner, Public Speaker, and Writer in the United Kingdom

Renata Blower

Campaigner, Public Speaker, and Writer in the United Kingdom

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My mother told me that as a child she rarely worried about me. She said that I always knew my own mind, and it didn't matter what the other children all did, if I believed something was right, I would follow my instinct and not the crowd.

It also meant that she knew that if I got in trouble, it was entirely my own doing.

It turns out it's also a bit of an advantage when you end up being the parent of three children, two of whom have disabilities. My oldest child has high functioning ASD, amongst other things, and my youngest has physical disabilities and complex health needs. All three children have an undiagnosed genetic condition (also known as SWAN- Syndromes Without a Name). This means that over the years I have worked with a wide range of professionals from health, social and educational services and think I have a pretty good understanding of what good practice looks like as a result.

Life hasn't always been easy, in fact, often far from it, but I have always felt that my energy is best spent trying to solve the problem rather than simply moaning about it. I also knew that if I was struggling, then other people who aren't in a position to fight their corner must be too.

I first started by sharing my experiences on my blog, Just Bring the Chocolate. This led to me meet some inspirational, like-minded people and to have some amazing opportunities come my way which enabled me to make a real difference to families similar to mine. Over the last few years I have juggled family life with working with local authority services, businesses, academic institutions, health services, children's charities and even the government. I also sit on various advisory boards, and am a school governor.

Life has undoubtedly been challenging sometimes, but the rewards are immeasurable. I am immensely proud of everything that I have achieved so far, none more so than bringing about the world's first nurse for undiagnosed children at Great Ormond Street Hospital.

In 2014 I was delighted to be invited to become a Fellow of the Royal Society for Arts for my work towards improving services for disabled and medically complex children and to be nominated for a WeGo health award.

More recently I became a director of Special Needs Jungle, a CIC dedicated to providing information for parents of children with special educational needs, disabilities and medical conditions and those working with them.

  • Work
    • Special Needs Jungle