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Living With Spina Bifida: Adolescents and Teens


 

Photo: A girl in a wheelchairMany physical, mental, emotional, and social changes are associated with the adolescent and teen years. Teens and adolescents develop their own personalities and interests and want to become more independent.

This transition period can be challenging, especially for people affected by spina bifida. It is important for the parents and caregivers of adolescents and teens with spina bifida to take active steps toward making them independent starting in childhood, so that by the time they are older they can develop the necessary skills to help them reach their full potential.

Physical Health

As people with spina bifida mature, they will perform more and more activities themselves. Most teens will dress and bathe themselves, manage their bathroom plans, and move about independently in their homes and communities. They might begin to make their own doctor appointments and continue to participate in updating their own Individualized Education Plan (IEP) or 504 Plan, if they have one. They also should participate in a seating or wheelchair evaluation at least once each year if they use a wheelchair. This will help the wheelchair to fit better and make moving about easier.


Mobility and Physical Activity

People with spina bifida higher on the spine (near the head) might have paralyzed legs and use wheelchairs. Those with spina bifida lower on the spine (near the hips) might have more use of their legs and use crutches, braces, or walkers, or they might be able to walk without these devices.

A physical therapist can work with adolescents and teens to teach them how to exercise their legs to increase strength, flexibility, and movement.

Regular physical activity is important for all teens and adolescents, but especially for those with conditions that affect movement, such as spina bifida. CDC recommends 60 minutes of physical activity a day. There are many ways for teens and adolescents with spina bifida to be active. For example, they can:

  • Engage in physical activities with friends.
  • Roll or walk in the neighborhood.
  • Lift weights.
  • Participate in sports activities (for example, swimming) and on teams for people with and those without disabilities.
  • Attend summer camps and recreational facilities that are accessible for those with disabilities.


For more information, please visit the following websites:

National Center on Physical Activity and Disability (NCPAD) – Spina Bifida Guidelines

Obesity

Accessible Summer Camps

Disabled Sports USA

Physical Health – Learn More


To learn more about the physical health of people affected by spina bifida, including hydrocephalus, using the bathroom, skin checks, latex allergy, and health checks please visit the Health Issues & Treatments page.

Sexual Health and Sexuality

Parents and caregivers of adolescents and teens with spina bifida can encourage them to talk with their health care professionals about sexuality, sexual functioning, contraceptives, and reproductive concerns and how these might be different for people with spina bifida.

Spina bifida causes nerve damage that can affect sexual functioning. Females with spina bifida are affected less often than males. Most people with spina bifida are fertile, and many can have children.


Folic Acid

Photo: A vitamin pillFolic acid is very important. All women who can get pregnant should be sure to take 400 micrograms (µg) of folic acid every day, even if they aren’t planning a pregnancy any time soon. Half of all pregnancies in the United States are unplanned. If a woman has enough folic acid in her body before and during pregnancy, it can help prevent major birth defects of the baby’s brain and spine―including spina bifida.

People who have spina bifida themselves are more likely to have children with spina bifida. A woman with spina bifida who is planning to get pregnant should talk with her doctor about getting a prescription to take 4,000 µg (4.0 milligrams) of folic acid each day at least 1 month before getting pregnant and during the first three months of pregnancy.

For more information, please visit the following websites:

Teen Sexual Health

Avoiding Pregnancy

Folic Acid

Urological and Sexual Function for Men with Spina Bifida

Urological and Sexual Function for Women with Spina Bifida

Mental Health and Well-Being

Overall mental health and well-being are very important for everyone. Mental health is how people think, feel, and act as they cope with life. To be at their best, people need to feel good about their lives and value themselves.

Teens and adolescents with spina bifida might feel isolated from others, or have low self-esteem. This can cause them to become depressed. There are different ways to treat depression. Exercise can be effective. Counseling or medication also might be needed.

Everyone feels worried, anxious, sad, or stressed sometimes. If these feelings do not go away and they interfere with daily life, adolescents and teens should talk with other people, such as a family member, school counselor, or health care professional, about their feelings. Depression and other mental health concerns can be treated.

If you have questions about mental health or where to get mental health services, your doctor or a licensed mental health professional in your community may be able to answer those questions or refer you to someone who can. A nearby health facility or your state mental health agency also may be able to help.

For more information, please visit the following websites:

Depression and Anxiety in Individuals with Spina Bifida

Teen Mental Health

Safety

Safety is important for adolescents and teens with spina bifida. They can be at higher risk for injuries and abuse. As they become more independent, it is important for them to learn how to stay safe and what to do if they feel threatened or have been hurt in any way.

For more information, please visit the following websites:

Teens (Ages 12-19) - Safety in the Home & Community

Bullying Among Children and Youth with Special Needs and Disabilities

Getting Around

Being safely mobile in their homes and communities will help adolescents and teens become more independent. To do so, they will need to find and use transportation safely. Many teens with spina bifida have issues that can affect safe driving. A driver rehabilitation evaluation specialist can identify what these issues are and if special changes are needed to the car to make it accessible to drive by teens with spina bifida. Parents and caregivers also can help teens learn to find and use other transportation safely, such as buses and cabs.

Looking to the Future

Teens with spina bifida and their families should begin planning for life after high school. This includes:

  • Looking for doctors that treat adults with spina bifida.
  • Obtaining medical insurance.
  • Deciding if the person affected by spina bifida will live outside of his or her parents’ home.
  • Choosing work.
  • Exploring college or vocational school opportunities.
  • Being volunteers in the community.
  • Finding and using transportation safely.
  • Having healthy relationships.


Planning for these changes early can help make the years ahead easier.

Finding Support

Having support and community resources can help increase confidence in managing spina bifida, enhance quality of life, and assist in meeting the needs of all family members. It might be helpful for parents of children with spina bifida to talk with one another. One parent might have learned how to address some of the same concerns another parent has. Often, parents of children with special needs can give advice about good resources for these children.

Remember that the choices of one family might not be best for another family, so it’s important that parents understand all options and discuss them with their child’s health care providers.

References

  1. Sandler, Adrian, M.D.(2004). Living with Spina Bifida: A Guide for Families and Professionals. University of North Carolina Press: Chapel Hill.
  2. Merkens, Mark J., M.D. and the Spina Bifida Association’s Professional Advisory Council (2006). Guidelines for Spina Bifida Health Care Services Throughout the Lifespan. Third Edition. Spina Bifida Association.
  3. The Association for Driver Rehabilitation Specialists. Driving and Spina Bifida.


Children who participate in special education classes will have an IEP. An IEP is a legal document that lets the school know what kinds of assistance will be needed by a child during the school day.

Usually, a 504 Plan is used by a general education student who is not eligible for special education services. By law, children may be eligible to have a 504 Plan which lists accommodations related to a child’s disability. The 504 Plan accommodations may be needed to give the child an opportunity to perform at the same level as their peers.
 

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    National Center on Birth Defects and Developmental Disabilities

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