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Clearly, children with spina bifida have very substantial problems. They will always be different from healthy children. Most children with spina bifida have the potential to learn, achieve, succeed, and create a happy life for themselves, but not without effort. They need the help of their families. Having a child with spina bifida brings many challenges. It is understandable, then, that parents and siblings of a child with spina bifida have significant stress. You may feel guilt, anger, anxiety, and/or hopelessness. You may feel alone and uncertain about what you should do.

Parents and siblings can help, but you need to have appropriate expectations and get organized. Only then can you learn practical ways to cope with the child’s problems and put these methods into practice. But making changes is not always easy. Sometimes it helps to have someone to talk to.

This is the purpose of support groups. Support groups consist of people in the same situation as you. They come together to help each other and to help themselves. Support groups provide reassurance, motivation, and inspiration. They help you see that your situation is not unique and not hopeless, and that gives you power. They also provide practical tips on coping with spina bifida and navigating the medical, educational, and social systems that you will rely on for help for yourself or your child. Being in a spina bifida support group is strongly recommended by most mental health professionals.

Support groups meet in person, on the telephone, or on the Internet. To find a support group that works for you, contact the following organization. You can also ask a member of your child’s care team, or go on the internet. If you do not have access to the internet, go to the public library.

• Spina Bifida Association of America - (800) 621-3141 or (202) 944-3285

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