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RESOURCE CENTER

INFORMATION LIBRARY

The following provides a wealth of resources by category. Each resource is annotated, providing a quick preview of the content. The list will be updated whenever new materials are received into the Resource Center collection. Please check back often. Also, if you have suggestions for a resource we can add to our collection, please let us know. We often have multiple titles for borrowing and serial material is archived (from 2005-Present), and readily accessible!

You may contact us or request material by e-mail ~ sbac@sbac.org or phone ~ 1.800.574.6274

BOOKS

Another Way to Go [Becky] (2005), Marlene Lutkenhoff, RN, MSN. Washington DC: Spina Bifida Association.

“This charming book will help parents and children ease the sometimes difficult transition from home to school… .” It is published in both a girls’ and boys’ version. The illustrations are soft, comforting, and honest. An engaging Can You Find…? Quiz is at the end.

Another Way to Go [Timmy] (2005). Marlene Lutkenhoff, RN, MSN. Washington DC: Spina Bifida Association.

See above annotation.

Connecticut Resource Directory: A Guide to Services and Opportunities for persons with Spinal Cord Injury or Disease and Others with Severe Physical Disabilities (2002). Wallingford, Ct: The National Spinal Cord Injury Association – Connecticut Chapter.

This 210 page comprehensive resource directory provides assistance to people in attaining information that will greatly enhance the quality of life for persons with Spinal Cord Injury and/or Diseases.

Detour Ahead (2008). Marlene Lutkenhoff, RN, MSN. Washington DC: Spina Bifida Association.

Parents and children will be reintroduced to Timmy who has a shunt that begins to malfunction. Fears are eased and shunt surgery is gently explained. A full page graphic of the shunt with a careful explanation is on the back inside cover.

Follow Your Dreams. (1995). Connie Penzarino, M.S., A.T.R. Cambridge, MA: National Spinal Cord Injury Association.

This thirty page upbeat delightful story has worthy characters and plot. They reveal how to“keep [your] wheels on the ground, and follow [your] dreams into reality, from day to day, just like everyone else. Interest level is pre-teen – teen, but applies to everyone.

Guidelines for Spina Bifida Health Care Services Throughout the Lifespan, 3^rd edition (2006). Mark J.Merkens, M.D. editor, Professisonal Advisory Council. Washington DC: Spina Bifida Association.

These are guidelines and options, and not standards of care. The contents are on reviews generated from an Evidence-Based symposium. Directions for research were clarified, and the goal of fostering and funding research was tapped. All information found within the sixty-three + pages will benefit the community of patients, families and providers.

A House for All Children: Planning a Supportive Home Environment for Children with Disabilities (2000). Richard V. Olsen, PH.D., B. Lynn Hutchings, M. Arch, Ezra Ehrenkrantz, F.A.I.A.

The goal-oriented guidelines “… for creating a safe and supportive home environment for children with physical disabilities,” are all major considerations within this book. The book covers the child’s physical environment; their physical, social, and emotional needs ~ carefully and thoughtfully. A practical and informative index follows. A companion VCR is also avail- able

Millie: Goes to Camp (nd). Libertyville, IL: Hollister Inc.

This fifteen page illustrated factual-based children’s book is yet again another great read. It openly discusses bladder function and control, highlighting catheter use and Mitrofanoff as alternatives for emptying the bladder in children. A simple glossary follows.

Millie: Swimming Success (nd). Libertyville, IL: Hollister Inc.

This fifteen page illustrated factual based children’s book is great. It openly discusses bowel(“poop”) management for children. A simple glossary follows.

Preventing Secondary Conditions Associated With Spina Bifida or Cerebral Palsy: Proceedings and Recommendations of a Symposium. (1994) Donald J. Lollar, Ed.D, editor. Washington DC: Spina Bifida Association of America.

While a 1994 copyright, this book holds its own in providing amazing energy, vision, and behavioral directions to the individuals, families, and professionals whose lives are influenced by the developmental disabilities of Spina Bifida or Cerebral Palsy.

Russell: Goes to Camp (nd). [see Millie: Goes to Camp above]

Russell: Swimming Success (nd). [see Millie: Swimming Success above].

Teens Who Self-Cath (1997). Joanne E. Field. Santa Barbara, CA: Coloplast Corporation.

This book is a terrific review of the urinary system. It also is a fine explanation of self-catheterization with teens in mind. If followed, teens will learn skills of responsibility, and independence.

Toobie: Self-Cath Coloring Book for Boys & Girls. (2002). Joanne E. Field. Santa Barbara, CA: Coloplast Corporation.

This coloring book is provided to help children and their families feel more comfortable about the process of self-catheterization. Children will learn to wash, lubricate, drain, and clean up with independence, confidence, and ease.

COMPILATIONS/GUIDES/KITS/WORKBOOKS

Adaptive Sports & Accessible Camps/Recreational Opportunities. (March 2009).

This is a comprehensive bound collection of pamphlets, brochures, directories, factsheets, newsletters and listings of a variety of promotional material. All are related to the offering of interactivity to help people with disabilities become more active.

CT Family-to-Family Health Information Network: Children’s Health-Care Financing and Resource Guide. (2006) U. S. Department of Health and Human Services National and Child Health Bureau.

This federally funded report provides a comprehensive guide to information and support to families of children and youth with special health care needs (CYSHCN) and the professionals who serve them.

Directions: Resources for Your Child’s Care, 3^rd edition. (2006). Connecticut Department of Public Health.

An extremely essential guide to assist parents of a special needs child in planning and coordination of their needs. Health, education, resources and Tips are presented with templates for your ease in keeping records. There is also a helpful 9+ page Glossary of Terms; a list of commonly used abbreviations; and pages of Quick Links to online resources.

Dream Builders: A Program for Skills Building and Creative Empowerment. (2007). R. W. H. Wilkins,

Dances With Wood, www.danceswithwood.org. Spina Bifida Association of Connecticut.This Dream Box Workbook allows the reader to build a dream box, attain woodworking skills, “play” with words, share, cultivate friendships, and simply have a dreamy time! You will of course get to know Woody, very well!

Empowering Parents School Box. (2007). No Child Left Behind, U. S. Department of Education

This kit-like School Box, is guaranteed to empower parents. It holds the key to said empowerment providing booklets on what parents need to know, checklists, resources, valuable information about the NCLB law signed on January 8, 2002. This school box simply, yet in depth, covers the goals of NCLB and how parents, students, and teachers should work together to realize the goal that “… every child can learn.”

Folic Acid Awareness and Reasons FOR/NOT Having a Daily Intake in Females and Males of Reproductive Age. (2008). Robin R. Leger, RN, MS, PhD - University of Connecticut Health Center, Farmington, CT and Kiley J. Carlson, ExecutiveDirector, ~ Spina Bifida Association of Connecticut.

This factsheet is packed with data accumulated from a state-wide awareness project extending beyond women, and including individuals (men and women) of childbearing age, youth, Hispanic, Asian, and immigrant communities. The one-page factsheet comprehensively covers everything from the Purpose of the awareness project through to the Results, and Implications & Recommendations.

Health Guide for Adults Living with Spina Bifida. Spina Bifida Association. (2005). Washington DC . Spina Bifida Association of America

Based on feedback from adults around the country, this guide and workbook covers health topics and issues, and information which will help adults, “… manage [their] health, prevent complications of Spina Bifida, and maximize [their] health…” It is a 3-ring notebook, which covers in depth over seventeen major issues from mental health to sexuality to aging ~ all so one can Feel Great! Look Good! Live Healthy! CD included.

Health Guide for Parents of Children Living with Spina Bifida. Spina Bifida Association. (2006). Washington DC: Spina Bifida Association of America.

Based on feedback from parents around the country, this guide and workbook addresses health topics and issues parents and children living with Spina Bifida face daily. Information is presented with clarity and often it is accompanied by helpful illustrations. Topics range from What to Expect to Neurological, Urological, and Orthopedic Function to all-encompassing sections of Promotion, Development, and Learning. A Resources section as well as a very inclusive Glossary is at the back.

Illuminations: Resources for Parenting a Child with Spina Bifida. [Kit]. (nd). Spina Bifida Association Washington DC: Spina Bifida Association of America.

The Kit contains pamphlets entitled, Living Well with Spina Bifida: Newborn to Age 2; Ages 3-5; 6-9. The pamphlets provide additional age specific and detailed information in the same format as, and in conjunction with, the Health Guide for Parents of Children Living with Spina Bifida; a CD entitled Lullabies for All ages: Dream with Me Tonight and a 2” X 4” luggage tag.

Schools and Families: Better Together. (2005). No Child Left Behind/ CT Parent Advocacy Center. U. S. Department of Education.

This kit provides a variety of materials informing parents of their rights, family involvement, family learning, school-family-community partnerships, research, and more! There is a power-point printout, of NCLB, brochures, pamphlets (from free tutoring to a factsheet NCLB Report Card), to booklets from Preschool through grade 5 and for parents of children from ten through fourteen on Helping Your Child.

Since You’re Not a Kid Anymore – A Health Care Transition Guide for Teens in Middle School. (June 2007) ICHP at the University of Florida Department of Health, Children’s Medical Services. This 29 page booklet is a comprehensive assessment all about “you.” The transition time of elementary and middle school is presented with information and activities which will help you navigate that time period. It is about you and your life ~ who you are now and what you want to do in the future. There is a companion video under Media entitled, This is Health Care Transition.

MEDIA (CD, DVD, VHS …)

ADD/ADHD ~ Neuro-Feedback vs Ritalin. [VHS]. (2001+). Mega Television Media Programs Segments/CT Public Hearing.

Comprehensive discussion, presentation, and demonstration of neuro-feedback therapy. Personal success stories were highlighted. Documentation of success is impressive.

Angels Don’t Walk. [CD and VHS: 3 min]. (1999). Song by Rick Tanksley, from the CD “The Desert. Belden Enterprises, Inc.

Rick made these In memory of his daughter, Christina Marie Dozier, who was born with Spina Bifida. He makes a plea for awareness in the taking of Folic Acid.

Before You Hear It. [CD: 30 sec]. (nd). Centers for Disease Control and Prevention.

This 30 second Public Service Announcement is audio only. It emphasizes the importance of taking Folic Acid even before you consider pregnancy. It is in both English and Spanish.

Before You Know It (For women considering pregnancy). [VHS: 30 sec]. (nd). Centers for Disease Control and Prevention.

This 30 second Public Service Announcement is an impressive advertisement, highlighting the importance of the need to take Folic Acid BEFORE you are pregnant. It is in both English and in Spanish.

The Challenge: World View. [VHS: 15 min.]. (1992). Written by Andrew Abrams. Washington DC: Spina Bifida Association of America.

Persons with Spina Bifida want to get out the message of how they meet challenges. Here they share their experiences in order to help others understand the challenges they must meet.

Fun Machines for the Physically Impaired. [VHS: 15 min.]. (1990’s). Texas: Rock N’Roll, Inc.

An exciting demonstration of the versatility of the many custom-fitted varieties of the Rock N’Roll Cycles.

Latex Sensitivity with Victoria Steelman. [VHS: 15 min.]. (1994). C. R. Bard, Inc.

This VHS is a solid presentation of the sources of allergies/allergic reactions from Latex products in the health industry and domestic front. Neuro-Tube patients need to take special precautions, as sources are many. Information about alternative-latex-free products is readily available. Latex-avoidance products are discussed at length.

Ready, Not (For women not thinking about pregnancy). [CD and VHS: 30 sec]. (nd). Centers for Disease Control and Prevention.

This 30 second Public Service Announcement is audio only on the CD. It highlights the need for awareness and action in taking Folic Acid, even when you are NOT thinking about pregnancy. They are in English and in Spanish.

Senate Hearing on Birth Defects. [VHS: 2+Hours]. (2002) Washington D.C.: Senate Congressional Hearings/Senate Health Sub-Committee.

Dr. Jose Cordero, then Director of Center for Birth Defects and Developmental Disabilities, and Fred Liguori, past Chairperson of the Spina Bifida Association of Connecticut, are speaking on panels. Discussion is for an appeal for the necessity for continued government funding.

Teens on the Move: An Exercise Video for Teens with Spina Bifida. [DVD: 1+ Hours]. (2006) Rehabilitation Institute of Chicago/NCPAD. Washington DC: Spina Bifida Association.

This exercise video for teens features eighteen minutes of aerobic, sixteen minutes of flexibility, and twenty-six minutes of strength training; There are warm-up and cool-down exercises as well. It is a lively way to get “moving.”

This is Health Care Transition. [DVD: 29 min]. (nd). John G. Reiss, PH.D., Project Director. Institute for Child Health Policy, University of Florida.

Young adults with chronic special needs must learn to responsibly transition from childhood to adulthood ~ medically, educationally, psychologically, and vocationally. There is major discussion on how to become in charge of your own health care. It is a major responsibility, but is necessary, in order to create the foundation of health for achieving your life goals. The specifics of how to transition ~ is detailed so that you can live independently. Learn! Develop a Plan! Practice! Take Charge realistically and positively! There is also a companion guide entitled Since You’re Not a Kid Anymore – A Health Care Transition Guide for Teens in Middle School.

The War That Never Ended: Serving the Children and Families of Vietnam Veterans. [VHS: 35 min]. (nd). The Center for Policy and Program Coordination at the Institute for Child Health Policy.

This videotape introduces health care, social service, school health, mental health and other professionals to the culture of Vietnam veterans and the clinical issues, which made these families unique. Effective provision of care for the Vietnam veterans’ children, noting strategies after careful observation is reviewed. Recent legislation awarding benefits to those children with Spina Bifida is described along with information about accessing these benefits.

The Yankee Lawyer’s Secrets. [CD: 45 min]. (2004). By Thomas M. Kablik, P.C.

Thomas M Kablik, is the grandfather of Andrew, a young boy who is challenged by Spina Bifida. He produced this CD, which is a personal collection of thoughts on life, and is donating the $20.00 purchase price to the Spina Bifida Association. Growing from “pain; knowing thyself are his messages. He presents a program for living ~ religiously, philosophically, sensibly! It is a 12-Step program of awareness, which will lead you to play, dance, create, and experience joy. For further information his web site is www.yankeelawyer.com

NEWSLETTERS

(Our collection also holds a generous and amazingly wonderful sampling of Out-of-State Spina Bifida Association Newsletters)

The Interactive. Kiley, J. Carlson, (ed). Spina Bifida of Connecticut, Inc.

A bi-monthly publication (anyone may subscribe to), whose mission is to promote the prevention of Spina Bifida and enhance the lives of all affected is a dynamic (and yes, Interactive) newsletter packed full of color, photographs, graphics, news, information, and happenings you will not want to miss. There is an online edition you may access by e-mail in pdf format by sending your request to SBAC@SBAC.org. Archived issues are available upon request.

BROCHURES/INSERTS/PAMPHLETS/POSTERS

Before You Know You’re Pregnant. [pamphlet]. Centers for Disease Control and Prevention (nd).

Articles discuss the importance of taking FOLIC ACID , eating right, taking vitamins, and why you should get enough FOLIC ACID every day even if you are not planning a pregnancy. Highlighted is that fact that, “… folic acid could prevent up to 70 percent of some types of serious birth defects.” This pamphlet, also published in Spanish, is entitled Antes De Que Te Des Cuenta Que Estás Embarazada.

Congratulations, Mom: You Have a Beautiful Baby.[pamphlet]. Centers for Disease Control and Prevention (nd).

Why Folic Acid should be taken daily is highlighted. Also, how you can get Folic Acid is presented. This pamphlet, also published in Spanish, is entitled Felicidades Mamá! Tienes Un Hermoso Bebé!

Folic Acid Every Day: Be Smart About Your Health Every Day. [pamphlet]. Spina Bifida Association (2007).

The importance of taking Folic Acid daily is described in detail ~ what it is; what it does; who needs it; where you can get it; and how much to take ~ This pamphlet, also published in Spanish, is entitled, El Ácido Fólico A Diario: Cuide Su Salud Todos Los Dias.

Folic Acid Now: So Your Body’s Ready When You Are. [pamphlet]. Centers for Disease Control and Prevention (nd).

Ready is the key word. In order to be really ready, you need to take Folic Acid, BEFORE you get pregnant. Why Folic Acid is so important, eating right, taking vitamins, are all discussed in detail.

Folic Acid Now: So Your Body’s Ready When You Are. [poster]. Centers for Disease Control and Prevention (nd).

8 ½ X 11 and 15 X 25 inch-sized posters are available. They illuminate, in pink neon and black color, the importance of preparing your body before motherhood.

Giving Children a Chance for a Change. [pamphlet]. Office of the Child Advocate (nd).

An explanation of just who the state of Connecticut Office of the Child Advocate is, what they do, and how they do it is presented in detail.

A Guide to Reimbursement of Intermittent Catheters: Know Your Options. [brochure]. Coloplast Corporation (2008)

This guide answers basic questions about coding and reimbursement of intermittent catheters.

How Much Do You Know About Folic Acid? [insert]. Spina Bifida Association (nd).

This insert is a Self-Test (with answer key) designed to find out just how much you know about Folic Acid. One side is in English and the other side is in Espanola, and entitled Cuánto Sabe Usted ACERCA del Ácido Fólico? .

Las Latina Somos Unas Madres Extraordinarias … [pamphlet and poster]. Centers for Disease Control (nd)

Más informacion! 15” X 25”poster ~ Hoy y todos los días, toma/una vitamina con ácido fólico.

Living with Spina Bifida: A Glimpse for Prevention Campaign Partners. [brochure] Centers for Disease Control and Prevention/National Center on Birth Defects and Developmental Disabilities. (nd).

The booklet is a graphic and personal photographic story of the Buchieri family, who have two children with varying degrees of Spina Bifida. The brochure is designed to educate those who want to learn more about Spina Bifida. It is designed to impress upon you the importance of preventing the defect.

Piensa Tener un BEBÉ? Las Madres Sanas Que Toman Ácido Fólico Tienen Bebés Más Sanos: La Historia de Emma. [brochure] Departamento de Salud y Servicios Humannos de los Estados Unidos y los Centros para el Control y la prevención de Enfermedades. (nd).

See Thinking About a Baby? Healthy Mothers Have Healthier Babies With Folic Acid.

Social Security: What You Need to Know When You Get Supplemental Security Income (SSI). [brochure]. Social Security Administration (2006).

This brochure is a valuable and extremely informative resource, which explains your rights and responsibilities when you receive Supplemental Security Income benefits.

Social Security: Your Ticket to Work. [brochure]. Social Security Administration (2006).

If you receive a Ticket to Work from Social Security, this brochure will answer your questions It will also provide you with additional help, if your questions are still unanswered.

Spina Bifida… A Birth Defect of the Spine. [pamphlet]. Spina Bifida Association of Connecticut (nd).

What Spina Bifida is, what happens when you have Spina Bifida, a description of problems and difficulties associated with people with Spina Bifida and information about the Connecticut Chapter of the SBAC (Spina Bifida Association of Connecticut) is presented. Graphics of a normal spine and Spina Bifida are compared.

Thinking About a Baby? Healthy Mothers Have Healthier Babies With Folic Acid. [brochure]. Centers for Disease Control and Prevention (2003).

This is Emma’s Story of planning for pregnancy. It begins with Folic Acid and stresses the taking of Folic Acid daily throughout her pregnancy and even after. Taking Folic Acid can prevent serious birth defects of a baby’s brain and spine. Emma’s Story has a happy ending with a healthy baby. This brochure, also published in Spanish, is entitled, Piensa Tener Un BEBÉ? Las Madres Sanas Que Toman Ácido Fólico Tienen Bebes Más Sanos.

Welcome to New Horizons: Independent Living for Adults with Physical Disabilities. [pamphlet]. New Horizons Village (nd).

A detailed description of a New Horizon Village apartment complex is presented. Barrier-free living is featured along with the support services provided.

What Does the Spina Bifida Association of Connecticut Offer? [insert]. Spina Bifida Association of Connecticut (nd).

This one-page (front and back) glossy insert highlights programs and services of the SBA of Connecticut. This insert is in English only.

What Is Spina Bifida? [pamphlet and insert]. Spina Bifida Association (nd).

The three types of Spina Bifida are discussed, along with the effects and prevention of Spina Bifida. SBA ‘s National Resource Center contact information is provided. This pamphlet is also published in Spanish as Qué es la Espina bífida? The insert is entitled, What Does the Spina Bifida Association of Connecticut Offer? as shown in above entry.

PERIODICALS/JOURNALS

INSIGHTS into Spina Bifida. (Newsprint ~ archived; Magazine Format ~ Winter 2008-Present). Washington DC: Spina Bifida Association.

A quarterly publication, which dedicates itself to serving all affected by Spina Bifida. It provides the latest on Advocacy; Research; Tips; Personal Stories; Themes, such as favorite activities and the lasting benefits of sports and recreation; and of course SBA news. Throw in a recipe or two; places to go; people to see ~ and you have an INSIGHT into how to Be the change you want to see in the world. [Gandhi].

SpeciaLiving Magazine (Spring 2007-Present). Illinois: Specialiving.

This quarterly publication features people, challenges, and solutions. It is a positive and forward-focused magazine.

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Resource Center information provided online and on site by Edwina Walker Amorosa, Information Facilitator.