‘A little bit EXTRAORDINARY’ is the rhyming children’s picture book I wrote to help people celebrate difference, encourage integration in schools and communities and prevent people being treated the way my older brother Martin had been.
Having your first baby is an extraordinary, exciting and daunting experience with many unknowns. When your firstborn has a genetic syndrome, those unknowns can seem overwhelming. Any advice, support or resources are valued like pieces of gold.
Martin was born in the 1970s with WAGR syndrome, a rare condition caused by the partial deletion of chromosome 11. He developed scoliosis, battled with kidney cancer, had aniridia – which results in partial sight from not having fully formed irises – and cataracts that doctors would not remove as it would result in blindness. Despite learning difficulties being a possibility, he was intelligent. Determined and resilient, he defied the odds many times. His strength in the face of adversity is remarkable, as is the case with many people with disabilities, who astound us by overcoming what others perceive as limitations. Martin means ‘strong one’ and he lives up to his name.
Our parents wanted Martin to attend the local primary school, but the headmaster said it was not possible. I really wanted us to go to school together. We used to go to a summer camp during school holidays and it upset me when I saw children tease or ostracise my brother. Although I was two years younger, I stood up for him. These strangers never seemed to think of the physical pain and challenges Martin faced daily to survive, before subjecting him to emotional pain through their cruel words and behaviour. They seemed devoid of empathy and compassion.
Martin’s battles for acceptance and equality were my original inspiration for ‘A little bit EXTRAORDINARY’, but since there are only about 600 cases of WAGR worldwide, I created a character with Down’s syndrome since it is a more widely known genetic condition that can also result in physical and learning differences and similar social challenges.
In February 2020, some teenagers posted a video on social media of themselves mocking people with Down’s syndrome. I felt their behaviour stemmed from ignorance and a lack of empathy and compassion. If they had been educated with a book like ‘A little bit EXTRAORDINARY’ in childhood they may never have acted like that. Adults have a responsibility to teach children about kindness, respect, empathy, friendship, compassion, forgiveness and inclusion. ‘A little bit EXTRAORDINARY’ is a teaching tool and includes ideas at the back for parents and teachers to help engage children in discussion.
In 2015, my youngest son attended nursery with a girl called Juliette with Down’s syndrome. Growing up, I mixed outside of school with children with disabilities, including a boy called Patrick with Down’s syndrome who inspired me with his open and affectionate nature. Juliette’s mum Olga was proud when I asked her if I could base my character on Juliette. Every person with Down’s syndrome is unique, so readers will identify with similarities with Juliette but there are differences too. I included Juliette’s dream of becoming a nurse and explained what Olga had told me about Juliette’s underactive thyroid gland, which slows down her body’s metabolism, since this can be a part of Down’s syndrome.
Having worked in the publishing industry for over 20 years, I challenged myself to design and edit the book myself and self-publish. Another working mum, Gráinne Knox, was recommended as an illustrator. We met for coffee, shared our ideas and found we had a lot in common, including our love of turquoise and peacock feathers! A few days later, the first lockdown started, so we used our evenings to become co-creators.
‘A little bit EXTRAORDINARY’ explains Down’s syndrome to young readers but its messages are important for everyone as they are encouraged to recognise their talents, build self-esteem, communicate their needs, reach for their dreams, follow their joy, and eliminate prejudice and judgement. Going forward, we can create a positive story together for humanity by recognising that everyone is a little bit extraordinary and honouring that.
To order a copy of ‘A little bit EXTRAORDINARY’ by Esther Robinson or follow her blog, please visit: www.estherrobinson.co.uk