Lending Library Resources

Resource Books

Burke, Beth. Preventing Neural Tube Birth Defects: A Prevention Model and Resource Guide. Center for Disease Control, 1998.

Dobbs, Jean, Editor. Kids On Wheels: A Guide to Wheelchair Lifestyle for Parents, Teachers and Professionals. No Limits Communications, Inc., 2004.

Dobbs, Jean, Editor. Kids On Wheels: A Young Person’s Guide to Wheelchair Lifestyle. No Limits Communications, Inc., 2004.

Ford, Jill Rose. Motherhood Magnified: Inspiring Stories of Insight and Lessons Learned from Raising a Child with a Disability. : Writers Club Press, 2000.

Haseltine, Florence P., Cole, Sandra S., & Gray, David B., Editors. Reproductive Issues for Persons with Physical Disabilities. Baltimore, MD: Paul H. Brookes Publishing Co., 1993.

Klein, Stanley D., Ph.D., & Kemp, John, Editors. Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew. New York: McGraw-Hill, 2004.

Klein, Stanley D., PhD. & Schive, Kim, Editors. You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children With Disabilities. New York: Kensington Books, 2001.

Klein, Stanley D. & Schleifer, Maxwell J. It Isn’t Fair! Siblings of Children With Disabilities. Westport, CT: Bergin & Garvey, 1993.

Kroll, Ken & Levy Klein, Erica. Enabling Romance: A Guide to Love, Sex, and Relationships for the Disabled (And the People Who Care About Them). Bethesda, MD: Woodbine House, 1995.

Leibold, Susan, MS, RN, Braun, RNC, MA, MSN, Cole, Jeane, RN, Peterson, Paula, MS. Bowel Continence and Spina Bifida. SBAA, 1995, copy 1.

Leibold, Susan, MS, RN, Braun, RNC, MA, MSN, Cole, Jeane, RN, Peterson, Paula, MS. Bowel Continence and Spina Bifida. SBAA, 1995, copy 2.

Liptak, Gregory S. MD. Evidence-Based Practice in Spina Bifida. Washington, DC: May 9 – 10, 2003.

Lollar, Donald J., Ed.D., Editor. Preventing Secondary Conditions Associated with Spina Bifida or Cerebral Palsy: Proceedings and Recommendations of a Symposium. SBAA, 1994.

Lutkenhoff, Marlene, R.N., M.S.N., Editor. Children with Spina Bifida: A Parent’s Guide. Bethesda, MD: Woodbine House, 1999.

Lutkenhoff, Marlene, R.N., M.S.N. & Oppenheimer, Sonya G., M.D., Editors. Spinabilities: A Young Person’s Guide to Spina Bifida. Bethesda, MD: Woodbine House, 1997. Copy 2

McLone, David, MD, PhD. & Ito, Joy, RN. An Introduction to Spina Bifida. Chicago, IL: Children’s Memorial Spina Bifida Team, 1998.

Meyer, Donald J., Editor. Uncommon Fathers: Reflections on Raising a Child with a Disability. Bethesda, MD: Woodbine House, 1995.

Olsen, Richard, PhD., Hutchings, B. Lynn, M.Arch., Ehrenkrantz, Ezro, FAIA. A House for All Children: Planning A Supportive Home Environment for Children with Disabilities. Newark, NJ: NJIT Press, 2000.

Sandler, Adrian, M.D., Editor. Living with Spina Bifida: A Guide for Families and Professionals. University of North Carolina Press, 1997.

Staub, Debbie, PhD. Delicate Threads: Friendships Between Children With and Without Special Needs in Inclusive Settings. Bethesda, MD: Woodbine House, 1998.

Toporek, Chuck & Robinson, Kellie. Hydrocephalus: A Guide for Patients, Families & Friends. Sebastol, CA: O’Reilly & Associates, Inc., 1999.

Whitney, Rondalyn Varney. Bridging the Gap: Raising a Child with Nonverbal Learning Disorder. New York, NY: The Berkeley Publishing Company, 2002.

ARTICLES

Disability Awareness. NICHCY.

Parenting a Child with Special Needs. NICHCY.

Resources for Adults with Disabilities. NICHCY.

Spina Bifida. NICHCY.

Spina Bifida (Spanish Version). NICHCY.

Transition Planning: A Team Effort. NICHCY.

Employment Outcomes. FOCUS. NICHCY.

Rehabilitation Research & Training Centers & Employment Outcomes Research.
FOCUS.

PICTURE BOOKS

Cowen-Fletcher. Mama Zooms. New York: Scholastic Inc., 1993.

Herrera, Juan Felipe. Featherless. San Francisco, CA: Children’s Book Press, 2004.

Holcomb, Nan. Andy Finds a Turtle. Exton, Pennsylvania: Jason & Nordic Publishers, 1987.

Holcomb, Nan. Danny & the Merry-Go-Round. Exton, Pennsylvania: Jason & Nordic Publishers, 1984

Holcomb, Nan. Patrick & Emma Lou. Exton, Pennsylvania: Jason & Nordic Publishers, 1989.

McMahon, Patricia. Dancing Wheels. Boston: Houghton Mifflin Company, 2000.

Meyer, Donald, Editor. Views From Our Shoes: Growing Up With a Brother or Sister with Special Needs. Bethesda, MD: Woodbine House, 1997.

Senisi, Ellen. All Kinds of Friends, Even Green. Woodbine House: Hong Kong, 2002.

Snyder Travis, Karen. Christal: Coping with Spina Bifida. Boston: Branden Books, 2001

CHAPTER BOOKS

Driscoll, Jean, & Benge, Janet & Geoff. Determined to Win: The Overcoming Spirit of Jean Driscoll. Colorado Springs, Colorado: Shaw Books, 2000.

Kriegsman, Kay H., PhD., Zaslow, Elinor L., M.A., Rechsteiner, Jennifer, M.A. Taking Charge: Teenagers Talk About Life & Physical Disabilities. Bethesda, MD: Woodbine House, 1992.

Lutkenhoff, Marlene, R.N., M.S.N. & Oppenheimer, Sonya G., M.D., Editors. Spinabilities: A Young Person’s Guide to Spina Bifida. Bethesda, MD: Woodbine House, 1997. Copy 1

Runyan, Marla & Jenkins, Sally. No Finish Line: My Life As I See It. NY, NY: Berkley Books, 2001.

TAPES – SBAA CONFERENCE, 2003

Health Care Issues for Adults with Spina Bifida. Timothy Brei & Mark Merkens, SBAA Conference, 2003.

Challenges of Depression & Anxiety. James Loomis, Conference, 2003.

Facilitating Social Skills Development. James Loomis, Conference, 2003.

Sexual Issues. Steve Sloan, Conference, 2003.

Coaching: Redefining the Parenting Role. Richard Horowitz, Conference, 2003.

Urinary Continence: Medical & Surgical Options. Bowel Continence: Surgical Options. Earl Cheng & Tom Bartholomew, Conference, 2003.

Living Successfully as Young Adults with Spina Bifida. Conference, 2003.

The Spine in Spina Bifida. Andrew King, Conference, 2003.

Chiari Malformation: Surgical Approach, Controversies & Best Available Evidence. Jeff Blount, Conference, 2003.

Orthopedic Considerations in the Child with Spina Bifida. Karl Rathjen, Conference, 2003.

Nonverbal Learning Disabilities & Independence in the Teen & Adult. Jo Ann Evans & Melanie Fralick, Conference, 2003.

Update on Tethered Cord. Arthur Marlin, Conference, 2003.

TAPES – SBAA Conference, 2002

Future and Special Needs Planning for Persons with a Disability. Bart Stevens, SBAA Conference, 2002.

Chronic Sorrow: Managing the Emotions of Parenting a Child with Spina Bifida. Timothy Onkka, SBAA Conference, 2002.

Independence. Dana Gass & Josyln Kressman, SBAA Conference, 2002.

Latex Allergy. Jacki Frost, SBAA Conference, 2002.

Depression and Anxiety in Individuals with Spina Bifida. Gregory Liptak, SBAA Conference, 2002.

Transitioning Urologic Care from the Parent to the Teenager. David Joseph, Mark Rich & Michael Keating, SBAA Conference, 2002.

What’s New in Spina Bifida? An Update of Health Related Issues. Gregory Liptak, SBAA Conference 2002.

Spina Bifida Outcome: A 25-year Perspective. Robin Bowman, SBAA Conference, 2002.

Neurological Causes of Scoliosis in Myelomeningocele. Mark Dias, SBAA Conference, 2002.

Chiari Malformation Update. Mark Dias, SBAA Conference, 2002.

Tethered Cord Update. Carolyn Carey, SBAA Conference, 2002.

An In-service Model on Nonverbal Learning Disabilities for the IEPTeam. Carol, Fletch & Tally Russell, SBAA Conference, 2002.


TAPES – SBAA Conference, 2001

From Puberty to Menopause: Women with Spina Bifida. Dr. Joseph Bellina, SBAA Conference, 2001.

Pioneer – Survivors: Insights on Childhood Resilience by the First Generation of Adults with Spina Bifida. Dr. Nienke Doss, JoAnn Armstrong & Dr. Gregory Liptak, SBAA Conference, 2001.

Bowel Management for Adults with Spina Bifida, SBAA Conference, 2001.

Tethering. Dr. Michael Partington, SBAA Conference, 2001.

Bowel Management: A Systematic Approach for Continence. Susan Liebold, SBAA Conference, 2001.

If We Knew Then What We Know Now: The Over 40 Crowd Speaks Out. Tom Baroch, Jane Reise & Ben Skillman, SBAA Conference, 2001.

TAPES – SBAA Conference, 1999

What’s All This Talk About Nonverbal Learning Disabilities? Word of Warning!
Linda J. Burdett, MA, SBAA Conference, 1999.

Latex: Past, Present, and Future. Elli Meeropol, MS, RNCS, PNP, SBAA Conference, 1999.

Taking Care of Your Marriage While Raising a Child With a Disability, Jim Loomis PhD, SBAA Conference, 1999.

Everything You Ever Wanted to Know About Lipomyelomeningocele, But Wasn’t Sure Who To Ask? Stephen Kinsman, MD, SBAA Conference, 1999.

Neuropsychological Evaluation: Should A Child With Spina Bifida Have One? G. Keith Stewart, EdD, SBAA Conference, 1999.

Urological Update For School Age Children, David B. Joseph, MD, Ross M. Decter, MD, SBAA Conference, 1999.

Plumbing 101: Don’t Give Up On Bowel and Bladder Management. Jean Brown, MS, RNC, SBAA Conference, 1999.

VIDEOS

32 nd Annual Conference: Building Bridges to Advance Understanding. Group Member Meeting Sunday, June 26, 2005.

Against the Wind. WILL-TV, Campbell Hall for Public Telecommunication. (The Story of Jean Driscoll).

A House For All Children: Planning A Supportive Home Environment for Children With Disabilities. Richard V. Olsen, PhD., B. Lynn Hutchings, M. Arch, Ezra Ehrenkrantz, FAIA.

Friends Who Care: An Elementary Disability Awareness Program. National Easter Seal Society.

Just Like Me? Children Talk About Spina Bifida. New England Myelodysplasia Association.

Latex Free Swimwear, 2003.

Miracle in Lane 2. Walt Disney Home Video.

Points 4 Tomorrow: PSA’s National Awareness Campaign. Spina Bifida Association of America.

Senate Hearing on Birth Defects, 7/26/02.

The Challenge: Spina Bifida Association of America. World View, 1993.

WOW: Winners on Wheels. 1993.

CDs

Dream With Me Tonight: Lullabies For All Ages. Produced by Lanny Sherwin, vocals by Melodie Crittenden, Sherwin Communications, Inc., 2002.

Articles & Brochures

“Accessible Air Travel: A Guide for People With Disabilities.” United Spinal Association, 2004.

“Access State & Local Government: Your rights and responsibilities under Title II of the Americans with Disabilities Act.” United Spinal Association.

“Disability Awareness.” NICHCY, March, 2003.

“Disability Etiquette: Tips on Interacting with People with Disabilities.” Judy Cohen, United Spinal Association, 2003.

“Employment Outcomes.” Focus Technical Brief, 2003.

“Espina Bifida.” NICHCY, January 2003.

“Fire Safety for Wheelchair Users at Work and at Home.” United Spinal Association, 2004.

“Learning Disabilities.” NICHCY, August 2002.

“Parenting a Child with Special Needs.” NICHCY, 2003.

“Rehabilitation Research and Training Centers and Employment Outcomes Research.” Focus Technical Brief, 2003.

“Resources for Adults with Disabilities.” NICHCY, January 2000.

“Spina Bifida.” NICHCY, January 2003.

“Taking Action: A Step-by-Step, Self-Help Guide to Becoming a Self-Advocate & Making a Difference.” United Spinal Association. 2 Copies.

“Transition Planning: A Team Effort.” NICHCY, January 1999.

“Understanding the Americans with Disabilities Act ( ADA).” United Spinal Association, 2004.

“Understanding the Fair Housing Amendments Act.” United Spinal Association, 2004.


Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history. Persons with Spina Bifida are urged to discuss their particular symptoms and situations with their personal physician.


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