Customer Reviews (1)

Kathy Hunter is more than just the author...
Kathy Hunter is not only the author but founded the International Rett Syndrome Association (IRSA) in 1984 with friends and families with individuals with Rett Syndrome. IRSA's first office was Kathy's kitchen table. I am privileged to have met Kathy & her daughter Stacie who will be 33 in May 2007. Decades ago Stacie was the first girl diagnosed with Rett Syndrome in the US.Kathy's passion, motivation & drive created an organization which is one of the only real resources for families with a daughter who has Rett Syndrome. They have new copies of this first edition book. A test to determine Rett Syndrome was only developed in December 1999. Rett Syndrome affects only 1 in every 10,000 to 15,000 girls. Our daughter has Rett Syndrome. When she was first diagnosed we were shocked and terrified, which over time turned to anger and frustration. Now we believe we are proactive and outspoken, although our effects pale to those of Kathy Hunter. Her book & and her organization IRSA are a must for anyone with a daughter with Rett Syndrome. The first edition, although outdated by recent developments, is well worth reading even if you pre-ordered the second edition from IRSA. Having seen and read parts of the not yet published second edition, I can say it is even better, greatly expanded & updated.
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Book Description

Information on many genetic disorders, and the frequent new findings on them, has been extremely difficult to come byuntil now. The Gale Encyclopedia of Genetic Disorders addresses the need for current, hard-to-find facts on emerging discoveries. The two-volume Encyclopedia, presented in a single alphabetical sequence, provides clear, complete information on genetic disorders, including conditions, tests, procedures, treatments and therapies, in articles that are both comprehensive and easy to understand, in language accessible to laypersons. The articles are arranged in a standardized format for quick comparison and ease of use, while non-disorder topics are covered in detail with extended entries. Students will want to consult the Gale Encyclopedia of Genetic Disorders for useful information on a range of well known disorders, including Down Syndrome, Trisomy, Hemophilia and Tourette Syndrome, and rarely seen diseases such as Meckel Syndrome, Neuraminidase Deficiency and Phenylketonuria.

Book Description
This digital document is an article from Women and Language, published by George Mason University on March 22, 1996. The length of the article is 3838 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

From the supplier: The Rett Syndrome organization for women utilizes the storytelling strategy to enhance the morale and determination of women who have Rett children. An analysis of several stories that are based on the personal experiences of women with Rett children was conducted to determine the psychological effects of storytelling. The women talked mostly about the organization and its benefits for children with Rett syndrome. The women also expressed their emotions by narrating the experiences of their children who empowered by the process of storytelling.

Citation Details
Title: For yours is the power of the story: the empowerment of women organizational actors through storytelling.
Author: Elizabeth M. Goering
Publication: Women and Language (Refereed)
Date: March 22, 1996
Publisher: George Mason University
Volume: v19Issue: n1Page: p47(5)

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Book Description
This digital document is an article from Journal of Sociology & Social Welfare, published by Western Michigan University, School of Social Work on March 1, 2003. The length of the article is 5085 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: A child's death: lessons from health care providers' texts.
Author: Nancy M. Bell
Publication: Journal of Sociology & Social Welfare (Refereed)
Date: March 1, 2003
Publisher: Western Michigan University, School of Social Work
Volume: 30Issue: 1Page: 113(14)

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Book Description
The article is excerpted fromGale Encyclopedia of Medicine.

Consult the second edition of this authoritative, comprehensive, in-depth medical guide for information on more than 1,700 medical topics in language accessible to adult laypersons. Presented in a single alphabetical sequence, articles range in length from one or two paragraphs for minor topics, to several pages or more for major topics. Disease/disorder articles typically cover definition; description; causes and symptoms; diagnosis; treatments; prevention; and more. Test/treatment articles typically cover definition; purposes; precautions; preparation; risks; normal and abnormal results; and much more. This second edition includes more than 200 new entries, 300 updated entries, approximately 650 color images and illustrations, and a comprehensive subject index. New features include biographical and historical sidebars throughout the text.

Disease/disorder articles contain some or all of the following sections:

• Definitions -- brief dictionary-style definition of the disorder
• Descriptions -- overview of the disorder; who gets it and why
• Causes & symptoms -- process, substance or organism that produces the condition; any risk factors that increase susceptibility to the condition; signs and symptoms of the disease
• Diagnosis -- overview of procedures and tests used to diagnose the condition; how the test is done; who should be tested and when; time required; cost; whether it's typically covered by insurance
• Treatments -- overview of conventional methods of care or management of the condition, such as drugs, surgeries, physical therapy, etc.
• Alternative treatments -- overview of alternative/complementary therapies that may be used to treat the condition
• Prognosis -- probable outcome of the disease
• Preventions -- what actions can be taken to prevent the condition from occurring

Book Description
This digital document is an article from Pediatric News, published by International Medical News Group on July 1, 2005. The length of the article is 491 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Parents, geneticists at odds on newborn tests.(Clinical Rounds)
Author: Linda Little
Publication: Pediatric News (Magazine/Journal)
Date: July 1, 2005
Publisher: International Medical News Group
Volume: 39Issue: 7Page: 48(1)

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Book Description

The Gale Encyclopedia of Mental Disorders is a comprehensive two-volume set providing detailed information on mental disorders and conditions, in an easy-to-use format. It includes entries for all 150 disorders classified in the Diagnostic and Statistical Manual of Mental Disorders, and also features entries for prescription, alternative and over-the-counter drugs, as well as the various therapies used to treat mental disorders.

Book Description
This digital document is an article from Journal of Child and Adolescent Psychiatric Nursing, published by Nursecom, Inc. on October 1, 2001. The length of the article is 4949 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Assessment of children with pervasive developmental disorders.
Author: Kathleen Koenig
Publication: Journal of Child and Adolescent Psychiatric Nursing (Refereed)
Date: October 1, 2001
Publisher: Nursecom, Inc.
Volume: 14Issue: 4Page: 159(8)

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Book Description
Katherine was a beautiful, perfect baby for the first year of her life. Then, without warning, she changed forever. She started crossing her eyes. She cried at night for hours at a time and could not be soothed. She stopped saying words, stopped crawling, and began what would become a lifelong habit of wringing her hands. Hospital visits and consultations with doctors offered no answers to the mystery. Soon Katherine slipped away to a place her mother and father could never reach.

In Keeping Katherine, Susan Zimmermann tells the story of her life with her daughter Katherine, who has Rett syndrome, a devastating neurological disorder. Writing with honesty and candor, Zimmermann chronicles her personal journey to accept the changed dynamic of her family; the strain of caring for a special needs child and the pressure it placed on her marriage, career, and relationship with her parents; the dilemma of whether Kat would be better cared for in a group home; and most important, the altered reality of her daughter’s future. A story of personal transformation that reminds us that it isn’t what happens to us that shapes our humanity, but how we react, Keeping Katherine shows the unconditional love that exists in families and the gifts the profoundly disabled can offer to those who try to understand them. ... Read more

Customer Reviews (2)

Honestyisn't always the best policy.
Yes, the author is honest, to the point of heartbreak. I really disliked this book, and it just broke my heart how Katherine was treated. It seems as though the author was very self absorbed and couldn't accept Katherine for who she is. I too have a non-verbal, non-ambulatory daughter, so I understand how it feels, I live it.

What I didn't understand was the author's several trips and conferences and most of all the family trips and vacations and then they would leave Katherine at HOME with a caregiver so they didn't have to deal with her. I also couldn't wrap my head around the Grandparents totally ignoring Katherine and the Author allowing them to treat her so shabby. There was a point in the book where the family leaves to go stay at the Grandparents and when they are leaving Katherine is crying, but they go without her anyway!

The author went on and on about HER grief and how she needed the trips etc...but what about Katherine? Just because a person can't talk doesn't mean they can't feel. The author made it seem as though just because she kept Katherine at home that was better than putting her into a care home, yet she was ignored in the home! She wrote about her younger daughter paying more attention to Katherine than she as a Mother did, and how the daughter's felt bad that Katherine was left alone in her room and the times they went away without her.

The only redeeming thing was the end when Katherine has a caretaker that takes her on all kinds of trips and spends so much time with her.

Honest Words
I always scan the newest titles in the special needs section when I visit bookstores. My son, like Zimmermann's daughter, is profoundly disabled. I look for books that connect me to the author's experiences. It helps me to feel less alone. I really scored with this one.

Keeping Katherine is a wise book, exceptionally well-written and honest. Although I didn't go through the extended period of repressed grieving that the author did, I understand it. Among most of us with non-verbal, profoundly affected children, there is the ongoing experience of mourning. It rises and falls, and it doesn't take away the beauty we see in our sons and daughters, nor does it negate the powerful love we feel for them.

In the book, she writes, "To cope with Kat, I have sought out those people like Rita and Linda Orona, who loved Katherine as she was and took comfort from her. Those who held her close and looked directly in her eyes. Those who felt no embarrassment, but understood the peace of her presence."

Those words spoke to me. The book is a wonderful read for parents of children with disabilities, as well as anyone interested in the power of love.
Carolyn Murray
danielsgift.com
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Customer Reviews (6)

TOUCHING THE SOUL..........
I just re-read this book. It is one of the most valuable books for parents, teachers and those who deal with crisis in their life-- which probably means all of us. The author writes poetically of one of the greatest challenges anyone can have --coming to terms with what life gives you. A lawyer, lecturer, teacher and parent, Zimmerman's book goes well beyond talking about the challenges of raising a handicapped daughter and its impact on her family, friends and others. She bares her soul to reveal how you can create a valuable life day by day. Her vitality, her wisdom and her sensitivity are a gift to the world. She writes cinematically and this deserves to be shared with the world. I had the good fortune to meet Zimmerman and she touches everyone she meets with her kindness and warmth. How to go on in the darkest of hours, how to live life to the fullest despite obstacles, hurdles and no guarantees.

Not just for parents of disabled kids
This is a wonderful story, a tribute to the human spirit.It's a tribute to Zimmermann's determination, too.I read in Zimmermann's later book that Grief Dancers was turned down by 30 publishers.Then she published it herself.There is much to learn from this story.Just one tidbit to whet your appetite:Zimmermann is concerned as to the effect of the disabled child on the other children.Her young daughter says: "Don't you get it, Mom? She keeps us from just living on the surface."(Despite my name, I am not the author or any of her relatives!)

It will leave you laughing, crying, and will touch your soul
This book touched me deeply because I can relate so closely to how Susan was feeling while raising a daughter with Rett syndrome. Her book takes you not only through her daughter's struggles and challenges but it alsotouchesyour heart as you begin to see how Susan grows with her ownrealization ofhow wonderful life can be with a child with special needs.

What others say about Grief Dancers...
"I have spent most of the day reading Grief Dancers, and am awed by its honesty and beauty. It's a wonderful book, and I wish it could be required reading." Madeleine L'Engle, Newbery Award winning author. "Susan Zimmermann portrays, with honesty, passion and wisdom, a chapter of her life that is both deeply terrifying and wholly inspiring. It is a story of loss and gain, pain and joy, and -- above all -- profound truth. It is a story with the power to change your life." T.A. Barron, author of Heartlight, The Ancient One, and The Merlin Effect. "Susan Zimmermann has written a book about her daughter, but also a book about each of us -- the fragile, damaged, but insistently precious part deep inside, that refuses to be cast off. To read these pages is to be reminded of the value of life itself. I have rarely been so moved." Swanee Hunt, former U.S. Ambassador to Austria.

spellbinding story of a family who triumphs over "tragedy"
Susan Zimmermann's story about Katharine is NOT for readers with special needs kids only! It is for all people who have an interest in raising children who will appreciate the different gifts that "different"people have to offer. It is about cultivating in our children an appreciation for, rather than disdain or despair for, people who are "disabled". This is a quick read,very compelling true storythat deserves widespread attention! I look forward to Susan's next work!!!!! ... Read more