Mum Turns Author

By Adrian Notter - February 28th, 2019 | Posted in News

Nadine Neckles, is a special needs blogger and life coach who has written for leading disability charities including Carers UK, Caring at the Chaos and Firefly. She is also Mum and full-time carer to her six year old daughter who has Nystagmus and Chromosome 18q-, a rare genetic condition. She is the inspiration behind her first book “Can I Tell you about Nystagmus?”.

The central character is based on the authors daughter, who attends an Orchard Hill College & Academy Trust school and is described by her teachers as a happy, lively young lady who is a bundle of fun. The Headteacher of her primary school said: “We are excited that one of our parents has taken the initiative to write about a condition that is rarely talked about and therefore misunderstood. It is an important part of our school ethos that we understand and help children to overcome their learning barriers. This book will not only help the staff team here but also others who work alongside others effected by this condition to be better practitioners, supporters and friends”

Nadine said: “I was inspired to create an easy to read children’s story and resource to explain Nystagmus in simple terms”. Nystagmus, an involuntary eye condition that has an incidence rate of 1 in 1000 people, you can be born with it, or it can be acquired. It is the most common form of visual impairment among children.

Nadine explains: “As a parent, I wanted to write a book that was accessible to children, hence the decision to tell the story through the eyes of ‘Amber’, a seven year old, black British girl born with the rare chromosome condition 18q- and Nystagmus. “It was important my daughter could connect with an identifiable character when the time comes to explain her condition, however there was nothing available – so I created one”.

In the book, Amber explains all about her ‘dancing eyes,’ or Nystagmus and how children with Nystagmus might need to read, learn or play differently, and what their families, school and friends can do to help. She invites readers to learn the causes and symptoms, to help others understand the condition and help increase the self-esteem and confidence of those who have it.

The book is pitched at children, parents, carers and professionals looking after children with Nystagmus, it highlights the symptoms of the condition and practically illustrates a number of strategies to help a child with Nystagmus. It is an enjoyable, easy and upbeat read given the complexities of the subject. It includes a practical checklist of easy adaptations to make school or home environments easier and more enjoyable for children with nystagmus, as well as a helpful list of recommended resources for additional support.

Here is a short video about the book, Can I Tell You About Nystagmus?

The book is available from Amazon.

You can follow Nadine on twitter @nadineneckles