Growing Up With Spina Bifida: Independence, Health and Support for Teens and Adults

As teens with spina bifida grow up, they take on more of their own activities, and young adults and adults with spina bifida can live and work independently. A key part of that is learning to manage their own health and health care.

Building independence

Caregivers should encourage independence from childhood, so that by their teens, people with spina bifida can bathe and dress themselves, manage their own bathroom plans, and get around home and community on their own.

Teens and young adults might start making their own doctor appointments, or help update their Individualized Education Plan (IEP) or 504 Plan if they have one. Self-management skills learned young mean more independence later.

Growing up with spina bifida is much like growing up for any teen, with extra thought given to:

• managing their own health care
• college or vocational school
• healthy relationships
• where to live
• work
• volunteering in the community

CDC's video The Spina Bifida Experience: Managing Your Own Medical Care covers this.

Support

Meeting other people with spina bifida and their families, and using community resources, can build confidence, improve quality of life and help meet the whole family's needs. See the Spina Bifida Association's chapters and its self-management and independence guideline, and the American Academy of Pediatrics' health care transition videos.

Staying active

Physical activity matters for everyone, and especially with a condition that affects movement. HHS recommends 60 minutes of physical activity a day. Options include:

• rolling or walking around the neighborhood
• lifting weights at home or in a gym
• organized sports for people with disabilities
• accessible summer camps or recreation facilities

The National Center on Health, Physical Activity and Disability has spina bifida guidelines.

Wheelchair users should have their chair evaluated at least once a year, so that it fits properly and moving is as easy as possible.

Getting around

Being able to get around safely builds independence. Many people with spina bifida have issues that can affect driving; a driver rehabilitation evaluation specialist can identify them and suggest car modifications. Learning to use buses, cabs and ride-hailing also helps. The American Occupational Therapy Association has guidance on driving and community mobility.

Managing physical health

Young adults can handle much of their own care:

• finding doctors who treat adults with spina bifida
• getting health insurance
• talking with providers about their condition
• making appointments
• ordering and reordering medicines and supplies
• seeking urgent help when needed
• managing their bathroom plan

Parents and caregivers can help young adults take charge of their health while still offering guidance, as they move from pediatric to adult care (video).

Sexual health

From adolescence, caregivers can encourage teens and young adults to talk with their provider about sexuality, sexual function, contraception and reproductive concerns. Spina bifida damages nerves in ways that can affect sexual function, but most people with spina bifida are fertile and can have children. Anyone with spina bifida planning a pregnancy should talk with a provider and get a prescription for high-dose folic acid. The Spina Bifida Association has guides for men and women.

Mental health

People with spina bifida may face depression or other mental health challenges in adolescence or adulthood, and young adults may feel isolated or have low self-esteem. If worried, anxious, sad or stressed feelings don't go away and get in the way of daily life, talk to someone — a family member, school counselor or health professional. Depression can be treated: exercise can help, counseling or medicine may be needed, and peer support groups help too. A doctor, licensed mental health professional, nearby health facility or your state mental health agency can help with services. See also the Spina Bifida Association's mental health guideline and CDC's page about mental health.

Sources

Based on "Teens, Young Adults, and Adults," part of CDC's spina bifida pages, Centers for Disease Control and Prevention; a work of the United States government in the public domain. The page's photograph was a stock image and is not reproduced.