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INFO FOR PATIENTS

The Search for the Perfect Handout Workshop:
ACPOC Annual Meeting 2005

Presenters:
Julie Honeycutt, PT and Barb Kaniewski, OTR
Jamee Riggio Heelan, OTR/L
Colleen Coulter-O'Berry, PT
Joanne Shida, OTR/L

The goal of this workshop was to generate resources that would be useful for the families of children with limb differences. The following list of multimedia resources was gathered and reviewed by the participants who have used them in their practice at centers specializing in limb deficiencies and amputations. If you have experience with an appropriate resource not on this list, please contact an ACPOC education committee member or workshop presenter and we will add it to our list.

MAGAZINES

Exceptional Parent is a monthly magazine for parents and families of children with disabilities, and the professionals who work with them. The magazine addresses the full spectrum of special needs, including medical and family issues, as well as financial issues and advocacy. Each month's issue features a special needs article, such as autism spectrum disorders, learning disabilities, managing stress and caregiver burnout. www.eparent.com

In Motion - A Publication of the National Limb Loss Information Center (part of the Amputee Coalition of America). 6 Issues per year (bimonthly). Amputee Coalition of America: 900 East Hill Avenue, Suite 285, Knoxville, TN 37915-2568. Phone: 1-888-AMP-KNOW (267-5669). Website: www.amputee-coalition.org.

Youth In Motion - published by the Amputee Coalition of America. Three times per year. Phone: (865) 524-8772.

Active Living Magazine. Quarterly. DT Publishing, P.O. Box 2660, Niagra Falls, NY 14302. Phone: (905) 957-6016. Fax: (905) 957-6017. e-mail: . Website: www.activelivingmagazine.com.

Palaestra (Greek word for sport school or gymnasium). Quarterly forum of Sports, Physical Education and Recreation for those with Disabilities: P.O. Box 508, Macomb, IL 61455. Website: www.palaestra.com. Editorial phone: (309) 833-1902.

NEWSLETTERS

FAIM Connection: Families and Amputees In Motion. A non-profit organization provides a quarterly newsletter (seasonal). c/o Shriners Hospitals for Children, 2211 North Oak Park Avenue, Chicago, IL 60707-3392.

Capabilities: Communicating the Science of Prosthetics and Orthotics, Northwestern University. Quarterly. Northwestern University PRI and RERP, 345 East Superior Street, Room 1441, Chicago, IL 60611. ISBN: 105-7156. Phone help line: (312) 238-6524. Website: www.medschool.northwestern.edu/depts/repoc.

CHAMP: Available through War Amps Child Amputee Program of Canada: 2827 Riverside Drive, Ottawa, ON K1V OC4. Phone: (800) 267-4023. Website: www.waramps.ca.

RIC Sports Report – the Official Newsletter of the Virginia Wadsworth Wirtz Sports Program. RIC's Center for Health and Fitness: 710 North Lake Shore Drive, 3rd Floor, Chicago, IL 60611. Phone: (312) 908-4292. Website: www.richealthfit.org. or RIC website: www.ric.org.

CHILDREN'S BOOKS

(Especially for children with limb deficiencies or amputations)

Chester...the imperfect all-star. By Sandra Lee Peckinpah. 40 pages. Dasan Publishing, P.O. Box 300, Agoura Hills, CA 91376. ©1993. ISBN: 0-9627806-1-8.

Puppies for Sale. By Dan Clark. 24 pages. Dalmation Press, Franklin, TN 37067. ©1999. ISBN: 1-57759-262-X.

The Making of My Special Hand, Madison's Story. By Jamee Riggio Heelan. 32 pages. Peachtree Publishers, 1700 Chattahoochee Avenue, Atlanta, GA 30318-2112. © 2000. ISBN: 1-56145-186-X.

Oliver's High Five. By Beverly Swerdlow Brown. 32 pages. Health Press. © 1997. ISBN: 0929173260.

Harry and Willy and Carrothead. By Judith Caseley. 24 pages. Greenwillow Publishing. © 1991. ISBN: 0688094929.

A Friend for Life - A story and activity book for kids with cancer – Draw Me a Picture. By Susan Nessim and Barbara Wyman. 64 pages. Proceeds go to Cancervive: 6500 Wilshire Blvd., Suite 500, Los Angeles, CA 90048. © 1994. ISBN: 0-9636333-2-5.

EXERCISE BOOKS

Exercise: What It Is, What It Does. By Carola S. Trier. 56 pages. Greenwillow Books, Attention: Children's Marketing Department, 105 Madison Avenue, New York, NY 10016. © 1982. ISBN: 0-688-00951-4.

BOOKLETS

REACH - The Association for Children with Hand or Arm Deficiencies. Quarterly newsletter "Within Reach". Main office: P.O. Box 54, Helston, Cornwall TR13 8WD. Phone: (0845) 1306 225. Website: www.reach.org.uk.

Handbook for Children with Lower Limb Deficiencies and Their Families. © 2005. Shriners Hospitals for Children, 12502 North Pine Drive, Tampa, FL 33612. Phone: (813) 975-7130.

Children with Limb Loss: A Handbook for Families - several booklets by age and subject. Approximately 25 pages. Center for Limb Differences, Mary Free Bed Hospital and Rehab Center, 235 Wealthy Street SE, Grand Rapids, MI 49503. Phone: (616) 454-7988.

Type with One Hand. By Nina K. Richardson. South-Western Publishing Company. Also available through the Sammons Preston Catalog. © 1959.

Amputee's Guide - Below the Knee. By Ann Alexander. 19 pages. Adult amputee oriented guide with photos. For bulk rates, write to: Medic Publishing Co., Drawer O, Issaquah, WA 98027. ©1975.

A Manual for Below Knee (Trans-tibial) Amputees, 5th Edition. By Alvin L. Muilenburg and A. Benne H. Wilson, Jr. Rehab Press: P.O. Box 380, Topping, VA 23169. For further information or permission to copy, contact ACA: 1-888-AMP-KNOW. Fax: (423) 525-7917.

Below Amputation: A Guide for Rehabilitation. By Todd Kuiken, Mark Edwards, and Nicole Miceli. 31 pages. Rehab Institute of Chicago, Resource Librarian – Learning Resource Center. Phone: (312) 238-2859. Fax: (312) 238-4451.

Sports for the Leg Amputee. By Bernice Kegel. 72 pages. Medic Publishing Co., P.O. Box 89, Redmond, WA 98073-0089. Phone: (206) 881-2883. ©1986. ISBN: 0-934230-14-5.

Exercises for the Lower Extremity Amputee - A program for regaining optimal function. Medic Publishing Co., P.O. Box 89, Redmond, WA 98073-0089. Phone: (425) 881-2883. Fax: (425) 867-8939. ISBN: 0-934230-46-3.

Fit Kids. By the American Physical Therapy Association. Volume 1, Issue 1. 93 pages.

VIDEO

Upper Limb Prosthetic Options for Kids: Below Elbow. Rehabilitation Institute of Chicago, Education and Training Dept., 345 East Superior Street 16th Floor, Chicago, IL 60611. © 1992.

EDUCATIONAL PROGRAMS/RESOURCES

Parent to Parent is a national non-profit organization that provides emotional and informational support to parents of children who have special needs. This is accomplished by matching parents seeking support with an experienced, trained "Supporting Parent". These veteran "supporting parents" are carefully matched in 1-1 relationships with parents who are newly referred to the program. Because the veteran parent has shared the experience of disability in the family, the veteran parent is often able to provide a unique form of support that only another parent who has 'been there" can. www.p2pusa.org

LLEAP - Limb Loss Education Awareness Program - An Outreach Program of the Amputee Coalition of America. Phone: 1-888-AMP-KNOW (267-5669). E-mail: .

Rehabilitation Institute of Chicago - Life Center, provides a multimedia education center for families and professionals. Many resources are available. 345 East Superior Street, Chicago, IL 60611. Phone: (312) 238-LIFE (5433). Website: www.ric.org. Click on the "Online Health Resources" button.

INFORMATION SHEETS

(primarily for exercise/sports - adults and children)

Suggested Talking Points for Physical Therapist About Kids and Exercise. Physical Therapy: Exercise Your Options.

Ten Exercises to Maximize the Performance of Your Prosthetic Feet. By Robert S. Gailey, In Motion, Volume 11, Issue 3, May/June 2001.

Kids' Stretches. Free catalog from Stretching Inc. Publications, P.O. Box 767, Palmer Lake, CO 80133. Phone: (719) 481-3928, (800) 333-1307.

Five Steps for the Introduction to Lower-Limb Running. By Robert S. Gailey, The O&P Edge, Dec 2003. Website: www.oandp.com/edge.

Physical Fitness: A Guide for Individuals with Lower Limb Loss. By Ernest M. Burgess and Albert Rappoport. Department of Veterans Affairs Rehabilitation Research and Development Service. Dept of VA – Veterans Health Administration, Washington DC 20420. John W. Goldschmidt, Rehab Research and Dev Service, 103 South Gay Street, Baltimore, MD 21202-4051.

Tummy Time Tools – A developmentally based program to incorporate positioning, handling, and fun activities into the lives of young infants. By Colleen Coulter-O'Berry, Laura Hylton-Plank, Dulcey Lima and Deanna Fish. Children's Healthcare of Atlanta, 5445 Meridian Mark Road, Suite 200, Atlanta, CA 30342. Phone: (404) 785-6890.

Teasing: Books for Children, Teasing Happens: How to make friends, Teasing Happens: Tips for Teachers, Teasing Happens: Tips for Parents, Teasing Happens: What to do, Tips for Encouraging Self-Esteem in Teens with Disabilities, Developed by Mary Free Bed Rehabilitation Hospital, Center for Limb Differences, 235 Wealthy St SE, Grand Rapids, Michigan 49503 Phone: 616 356-1902 FAX:616 356-1903