– Customer review on 14/03/2011

This book is a welcome addition to the literature - not only are there too few books of its kind in print - but Gothard has managed to collect an exceptionally comprehensive and diverse set of voices to capture what it means to live with Down syndrome in the 21st century.

An historian Gothard tackles the project with intellectual rigour - interviewing more than 60 parents of children with Down syndrome as well as people with Down syndrome. She also demonstrates an acute understanding of cultural and historical context. She could have chosen to include only the more vocal and articulate parents, however determined to collect information from the widest of parent bases, she worked diligently and tirelessly to seek out as many different voices as possible.

Importantly, this theme of inclusion, this seeking out of different voices runs through chapter after chapter. For example in the chapter the 'baby I'd dreamed of having' Gothard not only places the 'dream' within in its socio-political context, but also presents a range of parental reactions - from immediate acceptance to the descent into a fully-fledged nightmare.

The fully-feldged nightmare is however, as Gothard points out, often short-lived, with most parents realising the nightmare is more about a lack of welcome on the behalf of society rather than the lived reality of Down syndrome.

Time and time again Gothard shows us how parents grow, how their children grow. As a result the reader is more than able to appreciate how the joys of a life lived differently might accumulate. Yes parents may have to fight for services, may have to fight to have their children included in their local community however it would seem from reading Gothard's interviews most parents come to believe it is a fight that enriches them, that is worth the time, effort and energy. That we can indeed have greater expectations.

The book is also important because it does not shy away from addressing the difficult subject of prenatal testing and its relation to the desire on the behalf of parents to have greater expectations for people with Down syndrome. How does a parent have greater expectations when the medical community expects women will terminate an affected foetus? Gothard explores in detail how parents come to understand the meaning of tests such as CVS and amniocentesis and how they negotiate their way through any subsequent pregnancy and the current climate of non-acceptance.

For a new parent the book may be challenging, however for those down the track the book will serve as a valuable resource as it successfully conveys the experiences of parents across the life span and creates a valuable sense of community.