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«Sally Patton UNITARIAN UNIVERSALIST ASSOCIATION BOSTON Copyright © 2004 by the Unitarian Universalist Association of Congregations. All rights ...»

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Farrell, Mame. Marrying Malcolm Murgatroyd. New York: Farrar, Strauss & Giroux, 1995. Hannah befriends weird Malcolm because he is supportive of her younger brother, Ian, who recently started using a wheelchair because he has muscular dystrophy. For children ages nine to twelve.

Fassler, Joan. Howie Helps Himself. Morton Grove, IL: Albert Whitman, 1987.

A boy uses a wheelchair and learns that doing things for himself is great.

For children ages four to eight.

Foland, Constance M. A Song for Jeffrey. Middleton, WI: Pleasant Company,

1999. Dodie, who is having a hard year because her parents have separated, becomes friends with a boy with muscular dystrophy and learns a lesson in living. For children ages nine to twelve.

267 Resources Gilman, Laura Anne. Coping with Cerebral Palsy. New York: Rosen, 2001. A book for adolescents with cerebral palsy.

Helfman, Elizabeth. On Being Sarah. Morton Grove, IL: Albert Whitman,

1992. Twelve-year-old Sarah, who has cerebral palsy, cannot walk or talk but uses technology to help make friends in a new school. For children ages nine to twelve.

Holcomb, Nan. Patrick and Emma Lou. Hollidaysburg, PA: Jason and Nordic,

1989. Two kids with spina bifida know they are not alone when they meet in physical therapy. For children ages four to eight.

Lutkenhoff, Marlene, and Sonya G. Oppenheimer, eds. SPINabilities: A Young Person’s Guide to Spina Bifida. Bethesda, MD: Woodbine House, 1997.

For children ages nine and up.

Nixon, Shelley. From Where I Sit: Making My Way with Cerebral Palsy. New York: Scholastic, 1999. For adolescents.

Osofsky, Audrey. My Buddy. New York: Henry Holt, 1992. The story of a young boy with muscular dystrophy who teams up with a service dog and wins a wheelchair.

Panzarino, Connie. Follow Your Dreams. Bethesda, MD: National Spinal Cord Injury Association, 1995. Two pre-teenagers in wheelchairs prepare for a race and befriend a girl in the hospital with spinal cord injury. For adolescents.

Panzarino, Connie. Rebecca Finds a New Way: How Kids Learn, Play, and Live with Spinal Cord Injuries and Illnesses. Bethesda, MD: National Spinal Cord Injury Association, 1994. For adolescents.

Rabe, Berniece. Margaret’s Moves. New York: E. P. Dutton, 1987. Nine-yearold Margaret, who has spina bifida and uses a wheelchair, longs for a new, lightweight “sports model” so she can speed around as fast as her athletic brother.

Senisi, Ellen B. All Kinds of Friends, Even Green. Bethesda, MD: Woodbine House, 2001. Seven-year-old Moses, who has spina bifida and uses a wheelchair, decides that his neighbor’s disabled iguana is like him because they can both get where they want to be in different ways than everyone else around them.

Winston, Pat. Earl the EMU: God Has a Purpose for Those Who Are Different.

n.p.: Light Way, 2000. Jason cannot run and play as well as other children, but with his animal friends, he learns that God has a purpose for everyone. For children ages four to eight.

Blindness and Visual Impairment American Council for the Blind: www.acb.org. A membership organization.

American Foundation for the Blind: www.afb.org/afb. This organization fulfills Helen Keller’s vision by helping people with blindness and visual impairments live independent lives.

268 Welcoming Children AZ to Deafblindness: www.deafblind.com. Information put together by a person in England who is deaf and blind.

Blind Sailing International: www.blindsailing.org. Helps people who are blind or have visual impairments learn to sail.

Canadian National Institute for the Blind: www.cnib.ca. Information and resources for people in Canada.

Center for the Partially Sighted: www.low-vision.org. Information and resources for people who have partial or low vision.

Gershe, Leonard. Butterflies Are Free. New York: Random House, 1995. The story of a young man with blindness learning to live independently from his mother with the help of a free-spirited young woman.

Herrmann, Dorothy. Helen Keller: A Life. New York: Knopf, 1998. A good biography of Helen Keller.

Holbrook, Cay M., ed. Children with Visual Impairments: A Parents’ Guide.

Bethesda, MD: Woodbine House, 2001. Excellent practical and comprehensive information.

Keller, Helen. The Story of My Life. New York: Bantam, 1991. A powerful story because it is in Keller’s own words.

Kleege, Georgina. Sight Unseen. New Haven, CT: Yale University, 1999. A compelling look at blindness from a person who is blind.

National Association for the Visually Handicapped: www.navh.org. Information and resources.

National Federation of the Blind: www.nfb.org. The largest and oldest membership organization of blind persons. Provides public education, information, and referral services.

National Information Clearinghouse on Children Who Are Deaf-Blind:

www.tr.wou.edu/dblink. Comprehensive information and resources.

Recording for the Blind and Dyslexic: www.rfbd.org. The nation’s educational library for people with print-related disabilities.

Runyon, Marla, with Sally Jenkins. No Finish Line: My Life As I See It. New York: Putnam, 2001. The story of Marla Runyon, an Olympic longdistance runner who is blind.

Weihenmayer, Erik. Touch the Top of the World: A Blind Man’s Journey to Climb Farther Than the Eye Can See. Auburn, CA: Audio Partners, 2002.

Weihenmayer, who is blind, tells the compelling story of how he climbed Mount Everest.

–  –  –

Alexander, Sally Hobert. Do You Remember the Color Blue? And Other Questions Kids Ask about Blindness. New York: Viking Children’s, 2000. A good book for allaying children’s fears and misunderstandings about what it is like to be blind.

Condra, Estelle, and Linda Crockett-Blassingame. See the Ocean. Nashville, TN: Ideals Childrens Books, 1994. When the fog rolls in, a girl with blindness wins the family competition to be the first to see the ocean on the way to the beach. For children ages four to eight.

Dorris, Michael. Sees Behind Trees. New York: Hyperion, 1999. A sixteenthcentury Native American boy finds that he does not need to see to earn an adult name and that there is more to adulthood than rites of passage.

For children ages nine to twelve.

Lawlor, Laurie. Helen Keller: Rebellious Spirit. New York: Holiday House,

2001. A biography of Helen Keller. For children ages nine to twelve.

Martin, Bill, Jr., and John Archambault. Knots on a Counting Rope. New York:

Henry Holt, 1997. A blind Native American boy gains confidence with the help of his grandfather; a Reading Rainbow book for preschool children.

Moon, Nicola. Lucy’s Picture. New York: Puffin, 1997. While the other children paint, a girl makes a collage so her grandfather, who is blind, can appreciate her art when he visits her school. For children ages four to eight.

O’Neill, Linda. Being Blind. Windermere, FL: Rourke, 2001. Explains what it is like to be blind and how blind people use braille, guide dogs, canes, and other aids to live independently. For children ages four to eight.

Deafness and Hardness of Hearing Adams, John W. You and Your Deaf Child: A Self-Help Guide for Parents of Deaf and Hard of Hearing Children. 2nd ed. Washington, DC: Gallaudet University, 1997. Practical and helpful information.

Alexander Graham Bell Association for the Deaf and Hard of Hearing:

www.agbell.org. Information on the auditory approach.

American Society for Deaf Children: www.deafchildren.org. Helps parents communicate with their deaf children in communities through the use of sign language.

ASL Access: www.aslaccess.org. Resources on American sign language.

DeafMall: www.deafmall.net/deaflinx/schools.html. A listing of schools for the deaf.

Deaf Linx: www.deafmall.net/deaflinx. Information on links concerning people who are deaf.

Handspeak: www.handspeak.com. An online dictionary of sign language.

270 Welcoming Children KidsWorld Deaf Net (KWDN): http://clerccenter2.gallaudet.edu/ kidsworlddeafnet/index.html. A national communication network of parents and professionals involved in the education of deaf and hard-ofhearing children.

Lane, Harlan, Robert Hoffmeister, and Ben Bahan. A Journey into the DeafWorld. San Diego, CA: Dawn Sign, 1996. Excellent information on understanding the Deaf-World.

Lane, Harlan. The Mask of Benevolence: Disabling the Deaf Community. San Diego, CA: Dawn Sign, 2000. A thought -provoking look at growing up deaf and how society treats deaf people.

Laurent Clerc National Deaf Education Center at Gallaudet University:

http://clerccenter2.gallaudet.edu. A comprehensive list of resources and information.

Marschark, Marc. Raising and Educating a Deaf Child: A Comprehensive Guide to the Choices, Controversies, and Decisions Faced by Parents and Educators. New York: Oxford University, 1998. Useful and comprehensive information.

National Association of the Deaf: www.nad.org. Offers advocacy and information.

National Institute on Deafness and Other Communication: www.NIL.gov/ nidcd. Disorders (NIDOCD). Provides information, resources, and the latest research.

Neisser, Arden. The Other Side of Silence: Sign Language and the Deaf Community in America. Washington, DC: Gallaudet University, 1990. One of the first books to describe the Deaf community.

Ogden, Paul W. The Silent Garden: Raising Your Deaf Child. Rev. ed. Washington, DC: Gallaudet University, 1996. Excellent useful information for parents from someone who is deaf.

Padden, Carol, and Tom Humphries. Deaf in America, Voices from a Culture.

Cambridge, MA: Harvard University, 1990. Descriptions of what it is like to be part of the Deaf-World.

Registry of Interpreters for the Deaf: www.rid.org. The largest association of interpreters for people who are deaf and hard of hearing.

Schwartz, Sue, ed. Choices in Deafness: A Parent’s Guide to Communication Options. Bethesda, MD: Woodbine House, 1996. Helpful, easy-tounderstand information.

–  –  –

Baker, Pamela J. My First Book of Sign. Washington, DC: Gallaudet University,

1986. Gives signs for one-hundred fifty of the words used most frequently by young children.

Booth, Barbara D. Mandy. New York: Lothrop, Lee, and Shepard, 1991.

Mandy, a young deaf girl, is delightfully presented in this lively picture book. For children ages four to eight.

Bowen, Andy Russell. A World of Knowing: A Story About Thomas Hopkins Gallaudet. Minneapolis, MN: Carolrhoda, 1995. For children ages four to eight.

Butts, Nancy. Cheshire Moon. New York: Front Street, 1996. A deaf girl loses her friend, who was also deaf, in a boating accident, forcing her to choose between living in the past and living in the real but difficult hearing world. For children ages nine to twelve.

Gillen, Patricia Bellan. My Signing Book of Numbers. Washington, DC:

Kendall Green,1987. Children learn the signs for numbers 0 through 20 and 30 through 100.

Hafer, Jan, and Robert Wilson. Come Sign With Us: Sign Language Activities for Children. Washington, DC: Gallaudet University, 1996. This illustrated activities manual contains more than three hundred line drawings of people signing familiar words, phrases, and sentences using ASL in English word order. Available in Spanish and English and on video.

Heelan, Jamee Riggio. Can You Hear A Rainbow? A Story of a Deaf Boy Named Chris. Atlanta, GA: Peachtree, 2002. For children ages four to eight.

Lakin, Patricia. Dad and Me in the Morning. Morton Grove, IL: Concept,

1994. The beautifully illustrated story of a boy and his father on the beach. For children ages four to eight.

Lee, Jeanne M. Silent Lotus. New York: Farrar, Straus, 1994. Vivid watercolor drawings bring to life the thousand-year-old tradition of Cambodian court ballet and the quiet triumph of a young deaf dancer. A Reading Rainbow book.

Litchfield, Ada Bassett. A Button in Her Ear. Morton Grove, IL: Albert Whitman, 1987. Angie finds out that she needs to wear a hearing aid. For children ages four to eight.

Lowell, Gloria Roth. Elana’s Ears, or How I Became the Best Big Sister in the World. Washington, DC: American Psychological Association, 2000. A strong story about a helping pet for a deaf girl. For children ages four to eight.

Millman, Isaac. Moses Goes to School and Moses Goes to a Concert. New York:

Frances Foster, 2000. These stories about Moses illustrate what it is like to be deaf. For children ages four to eight.

Peterson, Jeanne Whitehouse. I Have A Sister—My Sister Is Deaf. New York:

Harper Trophy, 1984. A young deaf child is affectionately described by her older sister, providing an empathetic, positive look at the relationship between siblings. For children ages four to eight.

272 Welcoming Children Rankin, Laura. The Handmade Alphabet. New York: Puffin, 1996. Celebrates the beauty of the manual alphabet.

Hidden Disabilities (Chronic Illnesses) American Trauma Society: www.amtrauma.org. Advocacy for injury care and prevention within communities.

KidsHealth: www.kidshealth.org. A good website for information about children’s health.

National Center for Chronic Disease Prevention and Health Promotion:

www.cdc.gov/nccphp/index.htm. Provides comprenhensive information and resources.

Asthma American Lung Association: www.lungusa.org. The nation’s oldest voluntary health organization focusing on lung disease research.

Bock, Steven J., Kenneth Bock, and Nancy Paulis Bruning. Natural Relief for Your Child’s Asthma: A Guide to Controlling Symptoms and Reducing Your Child’s Dependence on Drugs. New York: HarperCollins, 1999.

Comprehensive information on a practical holistic approach.

Canadian Lung Association: www.lung.ca. Advocacy and information about lung disease in Canada.

Firshein, Richard N. Your Asthma Free Child: The Revolutionary Seven-Step Breath of Life Program. New York: Penguin Putnam, 2002. A successful program of integrative medicine that combines traditional medicine with alternative approaches.

ibreathe.com: www.gsk.ibreathe.com. Good information and resources about asthma for both kids and parents.

Plaut, Thomas F. Children with Asthma: A Manual for Parents. Amherst, MA:

Pedipress, 1998. Useful and practical information.

Snuffles and Sneezes: www.allergyasthma.com. Allergy and asthma care and prevention for the family.

–  –  –

Brand-Miller, Jennie, Kaye Foster-Powell, Thomas Wolever, and Heather Gilbertson. The Glucose Revolution: Pocket Guide to Children with Type I Diabetes. n.p.: Marlowe, 2001. Useful and practical suggestions for choosing the right foods.

Children with Diabetes: www.childrenwithdiabetes.com. An online community for kids, families, and adults with diabetes.

Diabetes Mall: www.diabetesnet.com. Comprehensive information about controlling and living with diabetes.

Loy, Virginia Nasmyth. Real Life Parenting of Kids with Diabetes. New York:

McGraw-Hill, 2001. Useful ideas for parents on how to handle the basic day-to-day needs of a child with diabetes.

McAuliffe, Alicia. Growing Up with Diabetes: What Children Want Their Parents to Know. New York: John Wiley & Sons, 1998. Written by a twentyone-year-old with diabetes, this book describes the social and emotional issues of diabetes from a child’s perspective.

Wysocki, Tim. The Ten Keys to Helping Your Child Grow Up with Diabetes.

New York: McGraw-Hill, 1997. Addresses the psychological, emotional, and social issues of raising a child with diabetes.

Epilepsy Aicardi, Jean, Alexis Arzimanoglou, and Renzo Guerrini. Epilepsy in Children. 3rd ed. Philadelphia: Lippincott, 2002. Comprehensive information on diagnosis and treatment.

American Epilepsy Society: www.aesnet.org. Comprehensive information and resources.

Blackburn, Lynn Bennett. Growing Up with Epilepsy: A Practical Guide for Parents. New York: Demos Medical, 2003. A quick reference guide on treatment as well as social, psychological, and behavioral concerns.

Epilepsy Canada: www.epilepsy.ca. Information and resources in Canada.

Epilepsy Foundation of America: www.efa.org. Comprehensive information, education, and advocacy services.

Freeman, John Mark, Jennifer B. Freeman, and Millicent T. Kelly. The Ketogenic Diet: A Treatment for Epilepsy. 3rd ed. New York: Demos Medical,

2000. Good information on the Ketogenic diet.

Marshall, Fiona. Your Child: Epilepsy. New York: HarperCollins, 1999. Basic, easy-to-read yet comprehensive information on both traditional and nontraditional treatments.

Murphy, Patricia A., and Russell L. Blaylock. Treating Epilepsy Naturally: A Guide to Alternative and Adjunct Therapies. New York: McGraw-Hill,

2001. Written by a person with epilepsy, this comprehensive guide provides alternative treatments that can both replace and complement traditional therapies. Also recommends how to find a health practitioner.

274 Welcoming Children Schachter, Steven C., Georgia D. Montouris, and John M. Pellock. The Brainstorm Family: Epilepsy on Our Terms: Stories by Children with Seizures and Their Parents. Philadelphia: Lippincott, 1996. Personal accounts of what it is like to have epilepsy.

Heart Conditions American Heart Association: www.americanheart.org/children. Provides information and resources.

Children’s Heart Foundation: www.childrensheart.com. Funds promising research.

Children’s Heart Institute: www.childrenheartinstitute.org. An excellent site for information and services for parents.

Keene, Nancy, and Rachel Prentice. Your Child in the Hospital: A Practical Guide for Parents. 2nd ed. Sebastopol, CA: O’Reilly & Associates, 1999.

Practical information and wisdom from “veteran” parents on helping make a child’s hospital stay easier.

Kids with Heart, National Association of Children’s Heart Disorders:

www.kidswithheart.org. Provides support, education, and resources for families.

Kramer, Gerri Fried, and Sheri Maurer. The Parent’s Guide to Children’s Congenital Heart Defects: What They Are, How to Treat Them, How to Cope with Them. Three Rivers, MI: Three Rivers, 2001. Medical and emotional issues are discussed in a reassuring way for parents.

Pediatric Heart Research Foundation: www.pediatricheart.org. Provides research, information, and resources.

Wild, Cheryl J., and Michael J. Neary. Heart Defects in Children: What Every Parent Should Know. Minneapolis, MN: Cronimed, 1998. Good and easy-to-understand information on heart defects.

Juvenile Arthritis

Arthritis Foundation, American Juvenile Arthritis Organization (AJAO):

www.arthritis.org. Comprehensive information and resources.

Fall, Guy. Everything You Need to Know About Juvenile Arthritis. New York:

Rosen, 2002. Useful and current information.

G.R.A.C.E. (Give Rheumatoid Arthritis Children Encouragement): www.

Fyldecoast.co.uk/grace. Helpful information for parents.

Tucker, Lori B. Your Child with Arthritis: A Family Guide for Caregiving. Baltimore, MD: Johns Hopkins University, 2000. Provides comprehensive information for understanding and effectively dealing with the issues facing children with arthritis.

275 Resources Lupus Digeronimo, Theresa, Stephen Paget, and Sara J. Henry. New Hope for People with Lupus: Your Friendly, Authoritive Guide to the Latest in Traditional and Complementary Solutions. Roseville, CA: Prima, 2002. An excellent resource for information about lupus.

Healthwell: www.healthwell.com. Information on the treatment of lupus with vitamins and herbs.

Lupus Beacon: www.galaxymall.com/commerce/lupus. A newsletter.

Lupus Foundation of America: www.lupus.org. Support, awareness, and information for families.

Moore, Sharon. Lupus: Alternative Therapies That Work. Rochester, VT: Inner Traditions International, 2000. Written by someone with lupus, this is an excellent source of information about alternative therapies.

Road Back Foundation: www.roadback.org. Information on rheumatic treatments and research.

Wallace, Daniel J. The Lupus Book: A Guide for Patients and Their Families.

Rev. ed. New York: Oxford University, 2000. Provides all the information women need to understand the disease as well as its diagnosis and treatment.

Books for Children and Youth Betschart, Jean, and Susan Thom. In Control: A Guide for Teens with Diabetes.

New York: John Wiley & Sons, 2001. Straightforward, readable information for teenagers.

Carter, Alden R. I’m Tougher Than Diabetes. Morton Grove, IL: Albert Whitman, 2001. A beautifully illustrated book about how Natalie, who is nine years old, manages her diabetes using a diabetes kit named Philomena.

For children ages eight to fourteen.

Gosselin, Kim. Taking Asthma to Camp: A Fictional Story About Asthma Camp. Plainview, NY: JayJo, 1998. A child going to camp discovers that children with asthma are no different than other children.

Gosselin, Kim. Taking Asthma to School. Plainview, NY: JayJo, 1994. A young boy talks about taking care of his asthma. For children ages four to eight.

Gosselin, Kim. Taking Diabetes to School. Plainview, NY: Jay Jo, 1994. A boy in grade school describes having and managing diabetes. For children ages four to eight.

Gosselin, Kim. Taking Seizure Disorders to School: A Story About Epilepsy. 2nd ed. Plainview, NY: JayJo, 2002. Seizures are explained in a positive, upbeat manner. For children ages four to eight.

Gosselin, Kim. Trick or Treat for Diabetes. Plainview, NY: JayJo, 1999. A Halloween story for kids with diabetes that includes practical advice on how to have fun and handle the candy. For children ages nine to twelve.

276 Welcoming Children Gosselin, Kim. ZooAllergy. Plainview, NY: JayJo, 1996. Justin and his friend Ashley discover many things that trigger their asthma and allergies. For children ages four to eight.

Howard, Ellen. Edith Herself. New York: Atheneum, 1987. In this story, set in the 1890s, Edith is sent to live with a married sister’s family, where she begins to have “fits” and receives little understanding. For children ages nine to twelve.

Lears, Laurie. Becky the Brave: A Story About Epilepsy. Morton Grove, IL:

Albert Whitman, 2002. A story about a girl living with epilepsy. For children ages four to eight.

Loy, Spike Nasmyth, and Bo Nasmyth Loy. Getting a Grip on Diabetes. New York: McGraw-Hill, 2000. A book for kids written by kids with diabetes.

Mazur, Marcia Levine, Peter Banks, and Andrew Keegan. The Dinosaur Tamer and Other Stories for Children with Diabetes. New York: McGraw-Hill,

1996. Twenty-five fictional stories to entertain, enlighten, and ease children’s frustrations with having diabetes. For ages eight to twelve.

Moss, Deborah M. Lee, the Rabbit with Epilepsy. Bethesda, MD: Woodbine House, 1989. Lee is a young rabbit who has seizures. For children ages four to eight.

Pirner, Connie White. Even Little Kids Get Diabetes. Morton Grove, IL: Albert Whitman, 1991. A brightly illustrated book about a two-year-old who gets diabetes. For children ages four to eight.

Smith Nicole. Allie the Allergic Elephant: A Children’s Story of Peanut Allergies.

n.p.: Jungle Communications, 2002. Allie helps children understand food allergies. For children ages four to eight.


–  –  –

Multiple Intelligences Theory Usher syndrome, 192 Support circles/groups, 25–26, 187 Ushers (at church services), 11–12

Tada, Joni Eareckson, 198–199 Vail, Priscilla L., 79 Talking stick, 212 Van Bockern, Steve, 164–166 Task force (for ministering to Visual impairments (children with), children with special needs), 191–200 8–10, 11, 28 characteristics of, 192–193 TBI. See Traumatic brain injury conditions occurring with, 180, Teletypewriter (TTY), 209 192 Thompson, Charlotte, 182 deafness and, 192, 194 Thompson, Sue, 100 experiences of, 74 Thought disorders (and families of, 194–197 schizophrenia), 168, 169–170 misunderstanding of, 191, Tobin, L., 156 193–194, 195, 198 Torrey, E. Fuller, 167 parents of, 195, 197 Total communication, 208 self-esteem of, 195 Tourette’s syndrome (children services provided for, 193 with), 148–149, 158, 163 siblings of, 195 Traina, Nick, 133–134 teaching strategies for, 197–199 Trainer, Marilyn, 115 theories of, 192 Traumatic brain injury (TBI) transportation for, 11 (children with), 21, 183–184, Visualization, 33, 66–67, 70–74, 85, 186, 192 139, 155, 177 Tremblay, Trena, ix TTY. See Teletypewriter Wade, Cynthia, 1 Waltz, Mitzi, 126, 132 Unipolar disorder, 123. See also Webb-Mitchell, Brett, 15–16, 121 Depression Weihenmayer, Erik, 194, 196–197 United Cerebral Palsy Organization, West, Thomas G., 79–80, 81 180–181 Weston, Denise Chapman, 209 United Nations World Health Willey, Liane Holliday, 102, 104 Organization, 172 Williams, Donna, 101, 102, 103,

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