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Living With Spina Bifida: School-Aged Children


Photo: Girl sitting in a desk

Starting school brings children into regular contact with the larger world. Friendships become important and physical, social, and mental skills develop rapidly during this time. Children who feel good about themselves are more able to resist negative peer pressure and make better choices.

This is an important time for children to become more responsible and independent. This is also a good time to start exploring potential lifetime interests such as hobbies, music, or sports. Developing independence can be challenging for people affected by spina bifida. It is important to begin working on this process early in childhood.

School

Many children with spina bifida do well in school. But some can experience difficulties at school, especially children with shunts that are used to treat hydrocephalus (often called water on the brain). These children often have problems with learning. They might have difficulty paying attention or work slowly, be restless, or lose things. They also might have trouble making decisions. There are activities that children can do both at home and at school to help with these problems. Healthcare professionals can provide information about these activities.


Individualized Education Plan (IEP)

An Individualized Education Plan is important because it will help children develop skills at school. 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. An IEP is created by parents and school personnel, such as a psychologist, teachers, a school nurse, and a physical education teacher, as well as any other professionals that parents think might be helpful.


504 Plan

If a child does not qualify for an IEP, parents can request a 504 Plan be developed for their child at school. 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. For example, a 504 Plan may include the child’s assistive technology needs, such as a tape recorder or keyboard for taking notes and a wheelchair accessible environment.

For more information, please visit the Spina Bifida Association website:

Educational Issues Among Children with Spina Bifida

Learning Among Children with Spina Bifida

Learning and Education Information for Parents, including IEP and 504 Plans

Example of a 504 Plan

Reading Comprehension Difficulties and Spina Bifida

Math Difficulties and Spina Bifida

Physical Health―What to Expect

No two children with spina bifida are exactly alike. Health issues will be different for each child. Some children have issues that are more severe than other children. With the right care, children born with spina bifida will grow up to reach their full potential.


Mobility and Physical Activity

Photo: Boy in a Wheelchair holding a basketballChildren 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 children, parents, and caregivers to teach them how to exercise the child’s legs to increase strength, flexibility, and movement.

Regular physical activity is important for all children, 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 children with spina bifida to be active. For example, they can:

  • Engage in active play with friends.
  • Roll or walk in the neighborhood.
  • Enjoy parks and recreation areas with playgrounds that are accessible for those with disabilities.
  • Attend summer camps and recreational facilities that are accessible for those with disabilities.
  • Participate in sports activities (for example, swimming) and teams for people with or those without disabilities.


For more information, please visit the following websites:

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

Obesity

Accessible Summer Camps

Accessible State Parks and Recreational Areas

Disabled Sports USA


Using the Bathroom

Children with spina bifida often cannot control when they go to the bathroom (incontinence). They also can develop urinary tract infections. It is important to develop a plan for going to the bathroom that works and is as simple as possible. This can lead to increased health, participation, and independence at school and in the home, and avoid embarrassment for children with spina bifida. Healthcare providers can help develop a plan. A tube (catheter) inserted in the child’s bladder can help drain urine. In some cases, extra fiber can be added to the diet to keep bowel movements regular. Surgery also might be recommended.

For more information, please visit the Spina Bifida Association websites:

Urologic Care and Management

Bowel and Bladder Needs and Care
 


Skin

Children with spina bifida can develop sores, calluses, blisters, and burns on their feet, ankles, and hips. However, they might not know when these develop because they might not be able to feel certain parts of their body.

Parents and caregivers can help protect the child’s skin and teach the child how to do this, too, by:

  • Checking the child’s skin regularly for redness, including under braces.
  • Trying to avoid hot bath water, hot irons and hot or unpadded seatbelt clasps that may cause burns.
  • Making sure the child wears properly fitting shoes at all times.
  • Using sunscreen on the child and making sure the child doesn’t stay out in the sun too long.
  • Making sure the child does not sit or lie in one position for too long.

Latex (Natural Rubber) Allergy

Many children with spina bifida are allergic to products that contain latex, or natural rubber. This means they should not use items made of natural rubber. A child with this type of allergy can wear a bracelet to alert other people of the allergy.

For more information, please visit the Spina Bifida Association website:
Latex (Natural Rubber) Allergy in Spina Bifida


Health Checks

Every child needs a primary care provider (for example, a pediatrician, family doctor, or nurse practitioner). The primary health care provider will want to make sure that the child is healthy; developing normally; and receiving immunizations against diseases and infections, including the flu.

In addition to seeing a primary health care provider, a child with spina bifida will be checked and treated as needed by doctors who specialize in different parts of the body. These doctors might suggest treatments or surgeries to help the child.

These specialists might include:

  • An orthopedist, who will work with the child’s muscles and bones.
  • A urologist, who will check the child’s kidneys and bladder.
  • A neurosurgeon, who will check the child’s brain and spine.

Physical Health – Learn More


To learn more about the physical health of people affected by spina bifida, including hydrocephalus and tethered spinal cord, please visit the Health Issues & Treatments page.

Safety

Safety is an important issue for children with spina bifida. They can be at higher risk for injuries and abuse. As these children become more independent, it is important for their parents and other family members to teach them 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:

Children - Safety in the Home & Community

Bullying Among Children and Youth with Special Needs and Disabilities

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

Sandler, Adrian, M.D.(2004). Living with Spina Bifida: A Guide for Families and Professionals. University of North Carolina Press: Chapel Hill.

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.

Primary Children’s Medical Center (2008). Let’s Talk about Spina Bifida.


An infection of the urinary tract. The urinary tract consists of the kidneys, ureters (tubes joining the kidneys to the bladder), bladder, and urethra (tube leading from the bladder to the outside of the body).
 

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