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Book review – #NobodyToldMe The truth about Down syndrome

19th March 2021

A book review by Sally Shillaker HV, #NobodyToldMe The truth about Down syndrome – Compiled and curated by Nicola Enoch.

#NobodyToldMe The truth about Down syndrome – Compiled and curated by Nicola Enoch

This is a beautiful book, packed with photos that tells the unique story of many children and adults with Down syndrome.  Their stories are told by themselves, their parents, siblings, grandparents and their own children.

“#NobodyToldMe challenges outdated perceptions and attitudes towards those with Down syndrome by showing the reality of our lives”.

The book  has been divided into 3 useful sections; “early days, family and life goes on” which allows the reader to dip in and out of different points in a family’s life, perhaps reading the section by dads ahead of a home visit for example.

The early days section provides the reader with stories from parents about their journey into a world many are stunned and apprehensive to enter.  Each story enriches the reader with its honesty,  insight and surprises.

The family section describes what having a family member with Down syndrome is like through the lens of different family members.  There are observations from dads, siblings, grandparents and friends. Through the reflections of those who have contributed, the reader is left in no doubt that their lives are different and positively transformed by their loved one with Down syndrome.

In the final section, which is titled “life goes on”, issues such as growing up are explored, the aspirations of young people with Down syndrome heard and the lives of amazing young adults described.  While their achievements are rightly celebrated in these pages, that is not the point, rather it is that babies with Down syndrome, like all babies, grow up with their own hopes and aspirations, and for many they decide their future paths which are diverse and incredible.

This is a wonderful resource for anyone who would like to hear from a person with Down syndrome or their loved ones living in society today, rather than relying on outdated myths and beliefs originating in the 1950s which are still commonplace.  I particularly enjoyed the honesty expressed in this book told through the lived journey, it covers issues we can easily forget, like different family units, same sex relationships, the cultural impact of Down syndrome on families and that people with Down syndrome can have their own children. It challenges assumptions made about children with Down syndrome, it challenges professionals’ approaches to talking about Down syndrome and it challenges how we view a baby, or child, or young person, or adult with Down syndrome.  It does this by providing the evidence from those who really know Down syndrome.

All proceeds made from this book will go to Positive about Down syndrome (PADS).  PADS supports parents of children with Down syndrome in many ways. One such way is via its Facebook groups. It has a Facebook group for pregnant women in the UK with a high chance/confirmed result of Down syndrome and a Facebook group for new parents of a child with Down syndrome in the UK.

#Nobody Told Me can be bought via Amazon (£12.99), Gumroad (£7.99) or you can download a free copy via PADS.

PADS has kindly offered a 20% discount with the following code for iHV members if you buy via Gumroad.

Code: ihv2121

Wouldn’t it be wonderful if every health visiting team had this as a resource to share and develop practice by?

Sally Shillaker, Paediatric Research Nurse at Solent NHS Trust and Professional Development Officer – Good Practice Points and Parent Tips at iHV