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Resources for Children and Parents (2nd Edition)March 2007 People with limb loss have particular information needs. Topic of the Month is a resource guide of information relevant to amputees. Click on the links below to access articles and Web sites directly. Many of the books and videos can be borrowed through Interlibrary Loan. Many more resources can be found by searching our online library. Please feel free to share this resource with those who may find this useful. We also welcome your comments and topic suggestions! Contact us via e-mail at library@amputee-coalition.org. Amputeddy Goes Back To School / Jean Boelter and Katie Policani; illustrations by Marta Creswell. [ Seattle: WA], Amputeddy Inc, [200-]. Todd goes back to school and learns that life will be okay. From the Amputeddy Web site: “These stories are based on real-life experiences of amputees. They are intended to be fun, to help amputees gain hope and confidence, and to educate the public about the thoughts, feelings, challenges and capabilities of amputees.” Amputeddy Helps a Friend / Katie Policani and Jean Boelter; illustrations by Marta Creswell. [ Seattle: WA], Amputeddy Inc, [200-]. A friend's father loses an arm while overseas in the army. Amputeddy Meets Nubby Bear / Katie Policani and Jean Boelter; illustrations by Marta Creswell. [ Seattle: WA], Amputeddy Inc, [200-]. Todd shares experiences with a bear who was born with only part of her right arm. Beginnings / Ben Herosian; illustrated by Melanie Ford Wilson. Winnipeg: Lilyfield and Co., c2003. From the series: Jungleville Tails: The Adventures of Bennett Bengal. ISBN 0-9734024-0-7. Summary: This is a story about being different, but realizing that the world we live in is a great place because of those differences. In the world of Jungleville, a small tiger, born without feet, causes great excitement. Coping With a Physically Challenged Brother or Sister / Linda Lee Ratto. 1st ed. New York: Rosen Pub. Group, c1992. ISBN 0-8239-1492-5. Summary: This book offers a personal account of the author, who has faced and mastered the experience of sharing a life with physically challenged people. It gives practical advice on how to cope with the feelings of being a family member of a person with a physical disability. It also includes a listing of further resources and other literature. (10 years - young adult.) Coping With Being Physically Challenged / Linda Lee Ratto. 1st ed. New York: Rosen Pub. Group, 1991. ISBN 0823913449. Summary: Gives guidance for young people on handling physical disabilities, with emphasis on problems faced by teens in school and dating. (12 years - young adult.) Different Is Not Bad, Different Is the World: A Book About Disabilities / Sally L. Smith; illustrated by Ben Booz; edited by Jami Leutheuser. Longmont, CO: Sopris West, c1994. ISBN 1-57035-030-2. Summary: The purpose of this book is to help children realize that being "different" is O.K.; in fact, it makes people more interesting and the world a better place. This book is intended to help children with disabilities feel better about themselves, as well as to help children without disabilities become more accepting of those different from them. (For teachers, parents and other adults.) Everything You Need to Know About Creating Your Own Support System / Anna Kreiner. 1st ed. New York: Rosen Pub. Group, 1996. ISBN 0-8239-2215-4. Summary: Discusses how teen-agers can create their own support system, a group of people in their lives to whom they feel connected and who can help them build skills and solve problems. Kids on Wheels: A Young Person's Guide to Wheelchair Lifestyle / [edited by Jean Dobbs]. Horsham, PA: No Limits Communications: Distributed by Leonard Media Group, c2004. ISBN 0-9712842-3-7. Summary: This book is written for kids and is about kids in wheelchairs living a full life. It provides encouragement and provides lots of Web sites and phone numbers that can lead to more information. Learning How to Appreciate Differences / Susan Kent. 1st ed. New York: PowerKids Press, 2001. ISBN 0-8239-5617-2. Summary: Discusses how to appreciate differences in people, emphasizing the importance of following your interests, deciding what you like, standing up for yourself, and appreciating others. Learning How to Feel Good About Yourself / Susan Kent. New York: PowerKids Press, c2001. ISBN 0-8239-5615-6. Summary: Describes how children can boost their self-esteem by doing things they enjoy and are good at, and by seeking the advice and comfort of others. Let's Talk About Being in a Wheelchair / Melanie Ann Apel. 1st ed. New York: PowerKids Press, 2002. ISBN 0-8239-5863-9. Summary: This book contains easy reading texts about people in wheelchairs. It shows the similarities of people who use wheelchairs and people who do not. It also discusses what a wheelchair is, who uses a wheelchair, wheelchair access and sports, and using the wheelchair for the first time. Magic Happens With Horses / Jill Clark. Victoria, BC: Tradford Publishing, c2005. ISBN 1-4120-6493-7. Summary: This storybook is told from the perspective of a working therapy horse, who gives unconditional love to promote self-esteem, satisfaction and trust. (For children, parents and therapists.) The Making of My Special Hand: Madison's Story / Jamee Riggio Heelan; illustrations by Nicola Simmonds. 1st ed. Atlanta, GA: Peachtree Publishers, c1998. ISBN 1-56145-186-X. Summary: This illustrated book tells the story of Madison, a little girl, in a first-person narrative. It explains the processes of getting a prosthesis from a child's point of view. Even though the pictured child is very young, the book can be used up to pre-school aged children. (2-5 years.) My Brand New Leg / Sharon Rae North. Lithonia, GA: Northstar Entertainment Group, LLC, 2003. ISBN 0-9741544-0-7. Summary: A young amputee girl with a prosthetic leg, meets a new friend. She shows her new friend activities such as running, riding a bike, and hiking, which she can still do with a prosthesis. New Equipment / Ben Herosian; illustrated by Melanie Ford Wilson. Winnipeg: Lilyfield and Co., c2005. From the series: Jungleville Tails: The Adventures of Bennett Bengal. ISBN 0-9734024-0-7. Summary: From the Web site “Two years have passed since that very special day when John and Jane Bengal were blessed with their very own Cub, Bennett. Since that eventful day at Grand Stork Station, Bennett has indeed proved to be a very special Tiger Cub. However, another question quickly arises within Jungleville ... How does a Tiger Cub without any feet, learn how to walk?! Bennett, John and Jane learn that all a Tiger Cub needs to walk is some ‘New Equipment’”! What It's Like to Be Me / written and illustrated entirely by disabled children; edited by Helen Exley. New York, NY: Friendship Press, c1984. ISBN 0-377-00144-9. Summary: In drawings and words, children from all over the world describe how they feel about being disabled. You and an Illness in Your Family / Tabitha Wainwright. 1st ed. New York: Rosen Pub. Group, 2001. ISBN 0-8239-3352-0. Summary: This book provides useful information that will help a child understand his or her feelings when a family member becomes sick. It also tries to teach children how to cope with these tough situations. Books on Diabetes for Children The Dinosaur Tamer and Other Stories for Children With Diabetes / by Marcia Levine Mazur, Peter Banks, and Andrew Keegan. Alexandria, VA: American Diabetes Association, c1995. ISBN 0-945448-58-9. Summary: A collection of 25 stories portraying children with diabetes doing usual things such as expressing their emotions, coping with difficulties and having fun. Even Little Kids Get Diabetes / Connie White Pirner ; pictures by Nadine Bernard Westcott. Morton Grove, IL: A. Whitman, 1991. ISBN 0-8075-2158-2. Summary: A young girl who has had diabetes since she was 2 years old describes her adjustments to the disease. Knees Lifted High / Georgia Perez; illustrated by Patrick Rolo & Lisa A. Fifield. [ Rockville, MD]: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, Division of Diabetes Translation, Native Diabetes Wellness Program, [200-]. This is the second in the series of the "Eagle Books." These books are educational tools for children to learn about diabetes and healthy, preventive life choices. Mr. Eagle explains to Native American boys Rain That Dances and Thunder Cloud how being active and getting exercise can help children to stay healthy. My Sister Rose Has Diabetes / written by Monica Driscoll Beatty; illustrated by Kathy Parkinson. Santa Fe, NM: Health Press, c1997. ISBN 0-929173-27-9. Summary: Book discusses the management of Type I diabetes, highlighting the issues of those without diabetes who sometimes feel forgotten in a family preoccupied with this chronic condition. Sarah and Puffle: A Story for Children About Diabetes / by Linnea Mulder; illustrated by Joanne H. Friar. New York: Magination Press, c1992. ISBN 0-945354-41-X. Summary: Upset by the restrictions imposed by her diabetes, Sarah dreams about a talking sheep who helps her accept her condition. Sugar Was My Best Food: Diabetes and Me / Carol Antoinette Peacock, Adair Gregory, and Kyle Carney Gregory; illustrated by Mary Jones. Morton Grove, IL: Whitman, 1998. ISBN 0-8075-7646-8. Summary: An 11-year-old boy describes how he learned that he had diabetes, the effect of this disease on his life, and how he learned to cope with the changes in his life. Through the Eyes of the Eagle / Georgia Perez; illustrated by Patrick Rolo & Lisa A. Fifield. [ Washington, D.C.]: U.S. Dept. of Health and Human Service, Centers for Disease Control and Prevention, Division of Diabetes Translation, Native Diabetes Wellness Program, [200-]. Summary: This is the first in the series of the "Eagle Books." These books are educational tools for children to learn about diabetes and healthy, preventive life choices. From the inside cover: "In these stories, a wise eagle assumes the role of Tribal Elder in the time-honored Native American tradition of using storytelling to pass on tribal culture and to teach lessons of life." Tricky Treats / Georgia Perez; illustrated by Patrick Rolo & Lisa A. Fifield. [ Washington, D.C.]: U.S. Dept. of Health and Human Services, Centers for Disease Control and Prevention, Division of Diabetes Translation, Native Diabetes Wellness Program: Indian Health Service, Division of Diabetes Treatment and Prevention, [200-]. Summary: This is the fourth book in the four-book series, the "Eagle Books." These books are educational tools for children to learn about diabetes and healthy, preventive life choices. Adapt My World: Homemade Adaptations for People With Disabilities / J. Rose Plaxen. Santa Ana, CA: Seven Locks Press, 2005. ISBN 1-931643-70-9. Summary: This book features homemade adaptations, in recipe book form, for children with disabilities at home, school, and play. These adaptations will help children with disabilities achieve similar goals and tasks of able-bodied children. Changed by a Child: Companion Notes for Parents of a Child With a Disability / Barbara Gill. 1st Main Street Books ed. New York: Main Street Books, Doubleday, 1998. ISBN 0-385-48243-4. Summary: True stories from parents who have been there, who understand the isolation and challenges. This is a work of compassion, insight, inspiration and hope. The Child With a Limb Deficiency: A Guide for Parents / by Darlene Talbot. Los Angeles: Child Amputee Prosthetics Project, Univ. of California at Los Angeles, c1979. Summary: This book offers support and general guidelines in handling the most common concerns in the rearing of a child with a limb deficiency. Homemade Books to Help Kids Cope: An Easy-to-Learn Technique for Parents and Professionals / Robert G. Ziegler. New York: Magination Press, c1992. ISBN 0-945354-50-9. Summary: This book shows parents how to create personalized books for and with their children. They can be written and designed to fit any situation. Whether the issue is relatively straightforward, such as moving to a new home, or highly complex, such as an amputation, the techniques described are flexible enough to handle them. And not much is needed to get started. Simple everyday items, a little time, and some creativity will go a long way in making communication more than just an idea. How to Organize an Effective Parent Group & Move Bureaucracies: For Parents of Handicapped Children and Their Helpers / written by Charlotte Des Jardins; introd. by Barbara Rice; artwork by Roger Carlson. Chicago: Coordinating Council for Handicapped Children, c1971. Summary: This book is written specifically for parents of children with disabilities and their helpers to show them how to get better services for their children. Kids on Wheels: A Guide to Wheelchair Lifestyle for Parents, Teachers & Professionals / [edited by Jean Dobbs]. Horsham, PA: No Limits Communications: Distributed by Leonard Media Group, c2004. ISBN 0-9712842-3-7. Summary: This book encourages parents, teachers and other concerned adults to help children with disabilities make as many of their own choices as possible and move toward independence. LLEAP: Limb Loss Education & Awareness Program / Amputee Coalition. Knoxville, TN: Amputee Coalition, 2002. Summary: LLEAP is a curriculum that was created for able-bodied students in the third, fourth, and fifth grades. LLEAP addresses a key problem: the social stigma of children with disabilities, particularly those with a limb difference. The curriculum is based upon a simple premise: Children can be taught to recognize and appreciate differences in themselves and others. Building upon this appreciation for differences, children will begin to ask questions and develop a personal awareness of their attitudes toward differences. These experiences, hopefully, will encourage children to explore disability issues and their role in promoting acceptance of other people. The Parent to Parent Handbook: Connecting Families of Children With SpecialNeeds / by Betsy Santelli, Florene Stewart Poyadue, and Jane Leora Young. Baltimore, MD: Paul H. Brookes Pub. Co., c2001. ISBN 1-55766-497-8. Summary: Parent to Parent programs match parents seeking information and emotional support in one-to-one relationships with experienced parents whose children have similar disabilities. This book shows how Parent to Parent programs work and can help you. The Special-Needs Reading List: An Annotated Guide to the Best Publications for Parents and Professionals / Wilma K. Sweeney; foreword by Ann Turnbull. Bethesda, MD: Woodbine House, 1998. ISBN 0-933149-74-3. Summary: This book provides short reviews and recommendations of the best books, journals, newsletters, organizations, and other information sources about children with disabilities. First Step and inMotion Articles “Beating the System: One Family's Successful Fight With State Bureaucracy” / Scott McNutt. Knoxville, TN: Amputee Coalition, 2006. Article from inMotion, January / February 2006. Summary: This article discusses one impact of the 2005 Supreme Court decision on the case of Schaffer v. Weast. The ruling states that parents who dispute a school system's special-education plans for a child have the legal obligation of proving that the plan will not provide the appropriate education for their child. According to the federal Individuals with Disabilities Education Improvement Act (IDEA), all children with disabilities are entitled to an education appropriate to their needs, but the Supreme Court ruling will mean that parents will bear the burden of proof. The Castro family went to court and won in Connecticut to help their daughter (with congenital upper-limb loss) get the most appropriate state-level early educational intervention possible. “Facing Amputation Surgery: Facing Congenital Limb Differences: A Child is More Than an Arm or a Leg” / Rick Bowers. Knoxville, TN: Amputee Coalition, 2001. Article from First Step: A Guide for Adapting to Limb Loss, 2001. Summary: This article looks at the challenges of parenting a child with limb differences. “A Force of Nature” / Bill Dupes. Knoxville, TN: Amputee Coalition, 2005. Article from inMotion, May / June 2005. Summary: At the age of 14, Nick Springer lost four limbs to meningitis, which he contracted at summer camp. This is the story of how he has overcome obstacles and is thriving today. “Guest Editorial: Giving Your Child the Gift of Self-Esteem” / Char Greer. Knoxville, TN: Amputee Coalition, 1999. Article from inMotion, July / August 1999. Summary: Char Greer, manager of the Area Child Amputee Center in Grand Rapids, Michigan, discusses types of information and support that are important to families with a child with a limb difference. “Kid's Corner: Promote a Positive School Experience for a Child With Limb Loss” / Mary Vander Hoek. Knoxville, TN: Amputee Coalition, 1995. Article from inMotion, Summer 1995. Summary: Mary Vander Hoek, RN BSN, examines how coping with school includes learning how to handle teasing. “My Little Miracle” / Isabel Pereiras. Knoxville, TN: Amputee Coalition, 2001. Article from inMotion, September / October 2001. Summary: Isabel Pereiras discusses having a child with a limb difference. Her advice for anyone with a special child is to always tell them the truth when asked a question, love them just the way they are, help them learn to love and accept their body, encourage them to see the positives in life, and never dwell on their differences. “Notes From the Medical Director: Congenital Limb Deficiencies and Acquired Amputations in Childhood, Part 1” / Douglas G. Smith, MD. Knoxville, TN: Amputee Coalition, 2006. Article from inMotion, January / February 2006. Summary: Limb loss is especially difficult when it involves a child who has congenital limb difference or who has had a traumatic accident or illness. This is the first article of a three-part series that provides insight about congenital limb differences and acquired amputations, and will be helpful to parents, children and pediatric healthcare professionals. This article introduces the different causes and forms of limb loss, and relates some statistics. “Notes From the Medical Director: Congenital Limb Deficiencies and Acquired Amputations in Childhood, Part 2: Emotional Response and Early Management” / Douglas G. Smith, MD. Knoxville, TN: Amputee Coalition, 2006. Article from inMotion, March / April 2006. Summary: Part 2 of this series on children with limb differences discusses emotional factors for parents and children, conflicts between children and parents, when prostheses are usually recommended, body image, and the challenges that children face when they transition into the adult healthcare system. “Notes From the Medical Director: Congenital Limb Deficiencies and Acquired Amputations in Childhood, Part 3: Prosthetic Issues for Children” / Douglas G. Smith, MD. Knoxville, TN: Amputee Coalition, 2006. Article from inMotion, May / June 2006. Summary: Part 3 of this series on children with limb loss and limb difference explores issues about whether, when or how often children should use prostheses, when prostheses should be replaced, and choosing prostheses to maximize function. Making the best possible decisions for a child will require flexibility and balance from the parents, communication with the child and the child's healthcare team. There is no one right answer for every child. “Notes From the Medical Director: Congenital Limb Deficiencies and Acquired Amputations in Childhood, Part 4: Injuries, Amputations and Children: Causes and Prevention” / Douglas G. Smith, MD. Knoxville, TN: Amputee Coalition, 2006. Article from inMotion, July / August 2006. Summary: In Part 4 of a series on congenital differences and amputation and children, Dr. Smith explores traumatic accidents and the main causes of acquired amputation among children. Dr. Smith also explains the surgical reasoning behind limb salvage and amputation surgeries. The most devastating of child injuries often involve riding on lawn mowers and being around lawn mowers when in use. “The Parent-Child Caregiver Experience” / Jennifer Hesselschwerdt with Zahra Meghani. Knoxville, TN: Amputee Coalition, 2000. Article from inMotion, January / February 2000. Summary: Jennifer Hesselschwerdt discusses parenting a child who has had a leg amputation. “PARENTING: Dreams of a Perfect Child” / Rick Bowers. Knoxville, TN: Amputee Coalition, 2001. Article from inMotion, January / February 2001. Summary: The story of Steffini Vandever and her son Jonah, who was born with backward knees and clubbed feet, with a missing baby toe on each foot, as well as malformed hands and no forehead. Jonah eventually had his legs amputated. Although there continue to be some struggles, he is now doing well. He is able to walk independently on prostheses, he is intelligent, he has a great personality, and, most of all, he has a loving, devoted mom. “PARENTING: Family Ties” / Zahra Meghani. Knoxville, TN: Amputee Coalition, 2000. Article from inMotion, September / October 2000. Summary: Barbara Wilkinson, a single parent and below-knee amputee, talks about parenting, her amputation, and her efforts to find peer support after the amputation . “Parenting Primer: For Parents of Children With Disabilities” / Jenifer Simpson. Knoxville, TN: Amputee Coalition, 1999. Article from inMotion, July / August 1999. Summary: Jenifer Simpson talks about being a parent of a child with disabilities. She particularly addresses the range of feelings a parent can have. “PARENTING: When the Victims Are Children” / Rick Bowers. Knoxville, TN: Amputee Coalition, 2001. Article from inMotion, March / April 2001. Summary: Diabetes is the second leading cause of amputations in the U.S. Although they comprise only 3 percent of the total population, people with diabetes account for more than 50 percent of nontraumatic lower-extremity amputations. This article profiles Zack McCarter, a young boy with Type 1 diabetes. "What Happened to Your Leg, Grandma?" / Chistina DiMartino. Knoxville, TN: Amputee Coalition, 2003. Article from inMotion, November / December 2003. Summary: This article looks at how to talk to a child when a grandparent or other loved one needs to have an amputation or has had an amputation. “When a Parent Loses a Limb: Helping Children Cope” / Pat Isenberg. Knoxville, TN: Amputee Coalition, 2001. Article from inMotion, May / June 2001. Summary: A list of tips on how to help a child to adjust to a parent with limb loss. “NLLIC Amputee Coalition Fact Sheet: Overcoming Childhood Obesity” / by Amputee Coalition staff. Knoxville, TN: Amputee Coalition, 2006. Summary: This Fact Sheet explains that obesity is a national epidemic, and child obesity rates are growing. Prevention and resources are discussed. “NLLIC Amputee Coalition Fact Sheet: Peer Support for Children and Parents / by Amputee Coalition staff. Knoxville, TN: Amputee Coalition, 2006. This Fact Sheet discusses peer visitation and resources for parents and children. NLLIC Amputee Coalition Fact Sheet: Summer Camps for Children With Physical Disabilities / by Derrick Stowell. Revised 2006 ed. Knoxville, TN: Amputee Coalition, 2003. This Fact Sheet lists camps around the country that provide a summer retreat for children with physical disabilities, including information on the Amputee Coalition Youth Activities Program (YAP) camp. “NLLIC Amputee Coalition Fact Sheet: When a Parent Loses a Limb: Helping Children Cope” / by Pat Isenberg.Revised 2004 ed. Knoxville, TN: Amputee Coalition, 2002. Summary: This Fact Sheet includes common questions children ask when a parent has an amputation. Also included are several points of discussion to promote communication between parent and child. The Greatest Gift That You Can Give Your Child: Ways to Build Independence / Program Development Associates. Cicero, NY: Program Development Associates, c1999. Summary: This video is designed for parents who recognize the importance of independence for their children with special needs. It offers suggestions and methods that can help and includes a series of interviews with parents, as well as children and adults with disabilities. This video demonstrates how a "task analysis" can be used at home to help accomplish independence. Food and Fitness Matter: Raising Healthy, Active Kids / Parents’ Action for Children; hosted by Julia Louis-Dreyfus. [ Beverly Hills, CA]: Parents’ Action for Children, c2006. In the Driver's Seat: Winning Negotiation Strategies for Families / Family Resource Project; Pam Shackelford and Kathleen Fitzgerald, scriptwriters. Cicero, NY: Program Development Associates, c2000. VHS. Aims to help families of individuals with disabilities negotiate with schools, service providers and other community resources. When Parents Can't Fix It: Living With a Child's Disability / Sixth Street Productions in affiliation with Metropolitan State College of Denver; producer, director, Sharon Thomson. Boston, MA: Fanlight Productions, [1997?]. ISBN: 1-57295-255-5. VHS. Summary: Examines the lives of five families who are raising children with disabilities, including the problems they face, how they have learned to cope, and the rewards and stresses of adapting to their child's condition. Insure Kids Now! A National Initiative to Linking Families to Low-Cost Insurance Programs. Rockville, MD: U.S. Department of Health & Human Services, Health Resources and Services Administration, [200-]-. Summary: Information on state health insurance programs for infants, children and teens that provide free or low-cost coverage. International Child Amputee Network (I-CAN!) / Bill Baughn. 1996-. Summary: Information about an Internet mailing list that provides information and support contacts for children with absent or underdeveloped limbs and their parents. KidsCamps.com. Boca Raton, FL: NicheDirectories, LLC, 1995-. Summary: A comprehensive directory of camps and summer experiences. Over 21,000 searchable programs are included in the directory. LimbDifferences.org: An Online Resource for Families and Friends of Children With Limb Differences. [ United States]: LimbDifferences.org, 2002-. Summary: This site is a continuation of the super-kids.org Web site and newsletter. The site aims to provide practical information as well as emotional support for families and friends of children with limb differences. PACER Center : Parent Advocacy Coalition for Educational Rights. Minneapolis, MN: PACER Center, [200-]-. Summary: The mission of the PACER (Parent Advocacy Coalition for Educational Rights) Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents. The PACER Center provides assistance to individual families, workshops, and materials for parents and professionals aimed at appropriate educational services for students with disabilities. Parents With Disabilities Online / Trish Day. Sponsored by Colorado Cross Disability Coalition. Summary: This site provides information, support and resources to parents with disabilities. SNAP Online: Special Needs Advocate for Parents. Century City, CA: Special Needs Advocate for Parents, 1997-. Summary: The mission of SNAP is to provide information, education, advocacy, and referrals to families with special-needs children of all ages and disabilities. Superhands: For Kids and Adults With Hand and Upper Limb Differences / developed by Steve Geigle.[ United States: s.n., 199-]-. Summary: Superhands is a forum for anyone to learn about and network with adults and youth who have hand or upper-limb differences. YAZ: Youth Amputee e-Zine. Knoxville, TN: Amputee Coalition, 2000-. This e-Zine is an extension of the Amputee Coalition as part of their Youth Activities Program (YAP). |
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