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Shared Experiences: The Experience of Having and Parenting Children with Upper Limb Deficiencies [Paperback]

Charlotte Fielder
5.0 out of 5 stars  See all reviews (16 customer reviews)

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Book Description

Oct 2009
This book has been written for parents of children with upper limb deficiencies (and those who are just about to become parents of children with upper limb deficiencies). It may also be of interest and useful to other family members and older children with limb deficiencies. Many of these parents and soon to be parents have joined Reach, an association (and a somewhat amazing association) supporting children with upper limb deficiencies and their families. There are many types of hand or arm deficiency. Some Reach children are born this way. Some have had accidents. Reach membership covers them all. The anomaly is so varied that obtaining support can be difficult. Only 60 babies a year are born in the UK and Ireland with an upper limb deficiency, so health care professionals do not really see enough cases to build up expertise. This publication will therefore also be of interest to a wider audience, including health professionals and teachers. It may be useful for parents of children with other types of visible differences too, and of interest to those whose lives may not be personally touched by disability, but are interested in other's life experiences.

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: 1,808,433 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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Customer Reviews

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Most Helpful Customer Reviews
5 of 5 people found the following review helpful
5.0 out of 5 stars invaluable 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
5.0 out of 5 stars Compassionate, powerful and balanced account 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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5.0 out of 5 stars Should be Shared by All 14 Mar 2010
Format:Paperback
I am a friend of Charlotte Fielder and a journalist who has written extensively on the NHS. This book is a must for anyone working in the NHS. It is an excellent and insightful book on children with upper limb deficeincies but it is also much, much more. For it is an eye opener for any health care professional. It shows all too clearly what it means to be a child set apart by a deficiency, whatever that might be, and the effect on their parents. It reveals how the health care worker can make a real difference, what words and actions will always be remembered by that child and their parents in the years to come - and what is better left unsaid.It is also a hugely enjoyable and easy book to read. For it is suffused with the personality of the author herself. It tells her story, what she suffered (on being a teenager is especially heart breaking)but also how resolve and character can make it possible, to have not only a good life, but one of the best out there. That is the best possible message any health care professional can take away from this important, ground breaking work.
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5.0 out of 5 stars A "must buy" book 14 Mar 2010
By Karen C
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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5.0 out of 5 stars Lovely book written by a Lovely person 19 Jan 2010
Format:Paperback
Firstly I must admit being an ex work partner of Charlotte..
A wonderful book to read, I know that Charlotte would have given 110% in compiling such a marvellous publication.
Lovely book written by a Lovely person !
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Most Recent Customer Reviews
5.0 out of 5 stars A unique book
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. Read more
Published on 12 Jan 2010 by J. Parry
5.0 out of 5 stars Excellent
Firstly I must admit to knowing Charlotte as a friend. However, other than on a basis of charitable support I have no direct contact with any person who has an upper limb... Read more
Published on 20 Dec 2009 by P. Sinclair
5.0 out of 5 stars Excellent, informative, touching, honest
There could be no more apt title for this book. The 'Shared Experiences' revealed are at once touching, funny, candid, shocking and enormously uplifting. Read more
Published on 30 Nov 2009 by A. Tewkesbury
5.0 out of 5 stars I loved this book
I initially bought this book because Charlotte is a friend and colleague, and I wanted to show my support for the huge effort she has made in writing this book. Read more
Published on 23 Nov 2009 by A. West
5.0 out of 5 stars Inspiring and Uplifting
This delightful book draws together many and varied experiences from a wide range of sources in a candid but gentle way. Read more
Published on 21 Nov 2009 by Richard Hall
5.0 out of 5 stars A Great Support
Being a mother to a five month old baby born with an upper limb deficiency and recently becoming a member of REACH, I was eagerly awaiting the release of this book to understand... Read more
Published on 20 Nov 2009 by H. Nash
5.0 out of 5 stars Sharing her life experiences (and others) - we applaud you Charlotte...
My whole life a book worm but I haven't read a book since having children....so over 3 years now...until this one. Read more
Published on 18 Nov 2009 by M. Rowley
5.0 out of 5 stars Great resource for paediatric nurses and readable too!
I have been waiting for this book for a while and I am not disappointed. The content is sometimes shocking, sometimes tear jerking but totally, totally relevant. Read more
Published on 11 Nov 2009 by A. T. Dodds
5.0 out of 5 stars Great book for parents and health professionals
I bought this book as I have an 8 month old baby boy who was born missing his left hand. I found it really insightful and has given me an idea of what issues and scenarios we might... Read more
Published on 11 Nov 2009 by Kelly Moyes
5.0 out of 5 stars Wonderful Book
'Shared Experiences' is the product of Charlotte's hard work, enthusiasm, dedication and selfless efforts to help others with upper limb deficiencies. Read more
Published on 11 Nov 2009 by Ms. A. J. Franklin
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