Hull and East Riding families who have first-hand experience of living with Down syndrome have shared their stories, hopes and aspirations in a new book showing the condition is nothing to be feared.
#NobodyToldMe has been produced by Positive About Down syndrome, a website by parents for parents and expectant parents, and is packed full of real-life experiences, photographs and inspiring words from children with Down syndrome, their parents, carers, grandparents, siblings and friends.
The book aims to help new and expectant parents and other readers understand Down syndrome beyond a medical textbook description and will also help health practitioners and those working in education and social care to understand more about the condition.
Six families supported by Downright Special, a charity which supports children with Down syndrome and their families in Hull and the East Riding, are among several in the book, including Charity Manager Gillian Bowlas and her daughter, Rachel, 15, who has Down syndrome.
Rachel’s ambition is to become a waitress and a makeup artist in the future, and she wants to live in her own house. In the book, Gillian tells her story of how life is nothing like doctors predicted when Rachel was born and details the joy and positivity Rachel brings to the whole Bowlas family.
Gillian said: “Five minutes after delivering our baby girl, the midwife told my husband and I that she suspected Rachel had Down syndrome. My head filled with what I now know are outdated stereotypes of what Down syndrome was and what it would mean for our future as a family.
“None of this was helped by doctors who insisted on predicting what she wouldn’t do and what sort of character she would have. Fast-forward to now, and I can’t begin to tell you how wrong these people were. Life is absolutely nothing like those predictions.
“#NobodyToldMe is a really useful resource for new and expectant parents on the reality of living with Down syndrome. People are still receiving misinformation about what it means to have the condition and parents can be scared and frightened of what’s ahead. The book is brilliant and alleviates some of their fears and concerns.”
Downright Special families contributed to making the book a reality by submitting photographs, stories and also making a financial contribution for it to be published.
Gillian said: “We work really closely with Hull Women and Children’s Hospital and we have an absolutely brilliant relationship with them. But we still have examples in the wider health sector of people not understanding, saying the wrong things, and not knowing enough about the condition.
“This book provides a clear and honest picture of what living with Down syndrome is like and is full of fantastic, inspiring stories.”
Downright Special Trustee Kate Long is mum to four-year-old Harry, who has Down syndrome and his picture also features in the book.
Kate said: “When Harry was born and we were in the Special Care Baby Unit, we had just been told that they suspected Harry had Down syndrome, which was a huge shock for us and a lot to get our heads around.
“The information was limited and there wasn’t much they could signpost us to. I spent time on Google and I was looking for something real and honest about Down syndrome, but I couldn’t find anything other than scientific or medical information.
“It would have been amazing to have this book at that time to give us hope and make parents feel a sense of excitement and hope for the future. We didn’t get that.
“It’s very easy to medicalise a baby with Down syndrome and talk about care pathways and tests. It’s such a privilege to be part of this book. I love the way it includes a journey of a baby all the way through to adulthood, which is what I was looking for.”
Nicola Enoch, founder of Positive About Down syndrome and editor of #NobodyToldMe said: “When my son, Tom was born, I was led to believe he’d be a burden to his sister Emily, that we’d be stuck at home and Tom would have to go to specialist provision – all complete poppycock.
“Tom and Emily couldn’t have a better relationship. We’ve been fortunate enough to travel the world and Tom is thriving at our local secondary school. #NobodyToldMe just how much I would love Tom and that he would make my heart burst with love and pride every day.”
Copies of #NobodyToldMe, which cost £7.99, can be purchased via Gumroad: https://gum.co/MtEBi
An electronic flipbook version can be read via: https://positiveaboutdownsyndrome.co.uk/nobodytoldme/