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Shared Experiences: The Experience of Having and Parenting Children with Upper Limb Deficiencies Paperback – Oct 2009


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Product details

  • Paperback: 156 pages
  • Publisher: Irwin Mitchell LLP; 1st edition (Oct. 2009)
  • Language: English
  • ISBN-10: 0956333303
  • ISBN-13: 978-0956333308
  • Product Dimensions: 20.8 x 14.8 x 0.8 cm
  • Average Customer Review: 5.0 out of 5 stars  See all reviews (16 customer reviews)
  • Amazon Bestsellers Rank: 2,335,519 in Books (See Top 100 in Books)
  • See Complete Table of Contents

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Review

A collection of experiences that take you on a journey of discovery, spanning decades, cultures and attitudes, in society and the medical profession. These stories are shocking, saddening, funny, inspiring and captivating. A brilliant realisation of life with one hand. --Cerrie Burnell - TV Presenter CBeebies

This book originally was born from a session held at a Reach AGM. However, the finished book will be an inspiring read for a parent or health care professional of a child with any disability. --Gary Phillips - Chairman of Reach

To recognise that they are not simply treating an anatomical abnormality but a large intertwined group of people is difficult for some surgeons, and so this book should be compulsory reading. In fact it should be compulsory for all health care professionals interacting with children with congenital differences, and their families, because it will enable them to hear, and what they hear from the experiences in this book will remind them that the surgery is not the most important part of what they do. It should also teach lessons in courage and duty that will humble many.
--Professor Simon Kay - Consultant Plastic and Hand Surgeon, St James University Hospital, Leeds

From the Publisher

Irwin Mitchell is proud to support Reach in the production of this inspiring book prepared by Charlotte Fielder.

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5 of 5 people found the following review helpful By pedlar family on 7 Nov. 2009
Format: Paperback
As a parent to a child who has an upper limb deficiency this book is invaluable. It made me laugh and cry as it gives detailed experiences on many aspects of having and parenting children with upper limb deficiencies. It ultimately left me with a sense of feeling supported and understood. This book will be read over and over again and will be of great comfort, an inspiration, and support for our family.
This book would also provide an excellent resource for any health care professional or teacher.
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1 of 1 people found the following review helpful By G. Fielder on 8 Nov. 2009
Format: Paperback
Firstly, I must declare an interest because the author is my wife, Charlotte. But that does mean I have witnessed her incredible dedication and effort over the past three years in researching and writing this invaluable book.

The result is a compassionate, powerful yet balanced synthesis of the experiences of around 30 parents of children with upper limb deficiencies, including her own parents. For Charlotte has a missing hand herself and brings her personal experience of a life lived with visible difference in such a way as to brilliantly illuminate the words of the parents.

The book covers a wide range of subjects that may be a concern for parents including difficult decisions about termination and surgery, the impact on parental relationships, self-awareness of the child and unwanted attention from others, health and educational issues, coping strategies and more.

But just as important is the insight that educationalists, health professionals and policy makers will gain by better understanding the experiences of those same parents.
This book is not just for those interested in upper limb deficiency. It speaks to anyone bringing up a child with any type of visible physical difference and also to anyone interested in our human capacity to face adversity.

Yes, I am proud of Charlotte's achievement in driving this through to publication, but more so I am proud of the difference this book has the potential to make to the lives of so many families.

Lastly, please note that all proceeds go to Reach, the Association for Children with Hand or Arm Deficiency and you can also purchase the book from their website.
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By Karen C on 14 Mar. 2010
Format: Paperback
I have known Charlotte for about 11/2 years although it feels much longer. After our first conversation on the phone I had a sense of knowing her for many years, so frank and comfortable was the whole conversation.
This theme of frankness is carried throughout "Shared Experiences" as it covers a myriad of topics which concern families learning to live with upper limb deficiencies.
It is the sort of book which can easily be picked off the shelf and read from cover to cover and it serves equally well as a reference to be dipped into at times of need or when questions arise.
It offers not only practical advice but also reassurance that help and support are available and the fact that families do not need to "manage" in isolation.
Reading from the perspective of a person with 2 upper limbs I still found there were uplifting statements and encouragement to know that although life throws at us much that is either unwanted and/or unexpected, there are routes open for helping deal with whatever we find particularly challenging.
I imagine and strongly believe that "Shared Experiences" offers a real lifeline to families dealing with many of the issues of living with a child with missing upper limbs. It opens doors which for many probably felt firmly bolted.
I would also highly recommend "Shared Experiences" for any, if not all health professionals. There are many grounded, common sense pieces of advice which, if half the health professionals heeded, would make a huge difference to how parents of children with missing limbs feel. I write here as a parent who spent many, many months dealing with health professionals whilst looking after my young son who was terminally ill with cancer.
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By J. Parry on 12 Jan. 2010
Format: Paperback
I don't often (i.e.never) feel compelled to review books, but this book an important one, filling a huge gap in the market. 'Shared Experiences' is both insightful and compelling, dealing with a subject that is close to my heart. As a parent (my daughter was born with a big right hand and little left hand), it was wonderful to see other parents' experiences collected together and considered in a way that goes far beyond the conversations one is able to have with other Reach members. As a qualitative social researcher, who reads way too many dry reports, I was impressed at how powerfully Fielder found narrative that clearly did justice to her range of responses. The book benefited enormously from her reflexivity and warmth as an author, and skilled interweaving of her own personal experiences with the parents' reflections.

I think the book should be standard issue to all new parents of children with upper limb differences, as it would undoubtedly have provided a lot of support to me during those first few bewildering months, and it is a book which they will keep going back to. I particularly liked the use of quotes to introduce each chapter, and which added a nice philosophical counter to the more pragmatic issues raised. I'm pretty sure that 80% of parents who open the book won't 'dip into it', but will devour it cover to cover! For all Fielder's humility about what she has been able to do, it is an extraordinary book.
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