Spina Bifida: Resources

Living with Spina Bifida by Adrian Sandler It is the most common complex birth defect. Spina bifida affects approximately one out of every 1,000 children born in the United States. In this comprehensive guide, Dr. Adrian Sandler offers a wealth of useful information on the medical, developmental, and psychological aspects of this condition. Accurate, accessible, and up-to-date, Living with Spina Bifida is written especially for families and professionals who care for children, adolescents, and adults with spina bifida. This edition contains a new preface by the author, addressing recent developments in research and treatment, as well as an updated list of spina bifida associations.

The Special Needs Planning Guide by John Nadworny; Cynthia Haddad Developed by two financial planning experts who also have family members with special needs, this one-of-a-kind book is an absolute must-have as parents and other caregivers plan for the lasting financial security of their families. Transforming the financial planning presentations theyâe(tm)ve given to families across the country into a thorough, easy-to-read resource, the well-known authors give parents a chronological guide for each stage from birth to adulthood. Parents will get comprehensive advice and strategies on how to address financial factors--including mortgages and other expenses, insurance policies, investments, and savings legal factors--such as conducting estate planning, weighing guardianship with less restrictive alternatives, and creating a Special Needs Trust to ensure a child's future government factors--identifying and supplementing government benefits, such as residential services, supported employment, and respite care family and support factors--such as the familyâe(tm)s values, the parentsâe(tm) careers, sibling considerations, and contributions of extended family members emotional factors--such as dealing with both positive and negative feelings, staying connected with others, and using strong emotions to fuel advocacy Included are all the tools families need to create an effective action plan for their finances: planning checklists and forms, a helpful glossary of financial terms, âeoeplanning pointersâe#157; that help readers remember key points, and extended case studies dramatizing other familiesâe(tm) evolving challenges and solutions. Plus, the CD-ROM in the back of the book contains a helpful Financial Planning Timeline and a printable Letter of Intent that lets parents communicate key information, concerns, and desires to future caretakers. A book parents will use for the rest of their lives, this guide is also a necessary addition to the reference library of every service provider.

Katie CAN Do... and You CAN Too! by Katie Hull; Sarah Hull (Photographer) When the Hull family was blessed with the gift of a new baby on the way, the family was ecstatic. What could make the lovely, young married couple any happier than the new addition of a baby? The Hulls' elation turned to concern when they discovered their baby would have a neurological defect called Spina Bifida, and this defect would result in a life-long disability.The couple bravely accepted the challenge and kept their attitudes positive, despite some of the less than encouraging comments they heard. Their little girl was born beautiful and strong; she would retain this strength of sweet spirit and it would later serve her magnificently. The Hulls never looked back.Katie has had her good days and her not-so-good days, but throughout her challenges, she has kept that strength going strong. Katie wrote her first book, Katie CAN do...and you CAN too!, to share her courage with others in the hope that she might inspire children and adults, with and without disabilities, to move ahead with their goals and dreams no matter what-because Katie can and so can you.Katie's unique perspective as a child living and thriving under a set of physical challenges lends tremendous credence and inspiration to her call to act. Whether or not you have a physical, mental, or internal challenge to overcome, you can read Katie's words, learn from her, and gain a boost to your spirit. There is nothing that holds you back, except yourself.Katie generously shares what she has experienced and learned from surgeries, as well as about learning how to use a walker, crutches, and other adaptive equipment. Katie's approach teaches all readers how effective a positive, don't-take-no-for-an-answer attitude can be. Katie CAN do...and you CAN too! kindly educates the reader all about Spina Bifida, all while sharing Katie's inspiring triumphs in racing, pageants, and more.

Sarah Joy by Martha Scofield

Blueberry Lu by Lisa Goff; Jasmine Mills (Illustrator) Exciting new children's author. Enjoy refreshing and exciting books about children with special needs, presented in a very subtle manner. Lucy loves blueberries! She especially loves blueberries when they are frozen! However, the colder the berries, the more risky for Lucy's friends and family. Come with us to discover what happens when Blueberry Lu eats her cold berries.

What Can You Do? by Kevin Arnold Haring Megan, a young girl with Spina Bifida tries to make a new friend by telling her all the ways that they can play together. The book helps introduce young children to other kids with special needs. This book has been designed for young children just starting to read and introducing them to other kids with disablities or their own.

Who Will Hold the Lemonade? by Rogill L. Anderson; Gail M. Nelson (Illustrator)

Spinabilities by Marlene Lutkenhoff (Editor); Sonya Oppenheimer (Editor) If you are a teenager or young adult with spina bifida, you will want this book. Spinabilities gives you practical tips and suggestions for becoming independent and managing your health care. Spinabilities provides you with the information you need to set goals and make them a reality. It is also recommended for parents, siblings, friends and teachers.