School-Aged Children

School

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

Individualized Education Plan (IEP)

An Individualized Education Plan is important because it can 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 a child may need at school. An IEP is created by parents and school personnel. This can include a psychologist, teachers, a school nurse, a physical education teacher, and other professionals.

504 Plan

If a child does not qualify for an IEP, parents can request a 504 Plan be developed for their child. 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 can 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 tablet or laptop to take notes. It may also ensure they have a wheelchair accessible environment at school.

Please visit the Spina Bifida Association website for more information on these topics:

Encouraging independence

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.

This is an important time for children to become more responsible and independent. It's also a good time to start exploring 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.

Health effects

Physical health

No two children with spina bifida are exactly alike. Some children have issues that are more severe than other children. Children with a higher level of spina bifida (near the head) might have paralyzed legs and use wheelchairs. Those with a lower level of spina bifida might have more use of their legs and use crutches, braces, or walkers. They might also be able to walk without these devices.

Using the bathroom

Children with spina bifida often cannot control when they go to the bathroom (incontinence) and can develop urinary tract infections.

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 areas of their body.

Guidelines

Physical activity

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 accessible playgrounds.
• Attend accessible summer camps and recreational facilities.
• Participate in sports for people with or without disabilities.

A physical therapist can teach children and caregivers how to exercise the child's legs to increase strength and flexibility.

For more information, please visit the following website:

Bathroom plan

It is important to develop a plan for going to the bathroom that works and is as simple as possible. Healthcare providers can help develop a plan for the child. 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 these Spina Bifida Association webpages:

Protecting skin

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 daily for redness, including under braces.
• Avoid hot bath water and seatbelt clasps that may cause burns.
• Always making sure the child wears properly fitting shoes.
• Using sunscreen and ensuring the child doesn’t stay long in the sun.
• Ensuring the child is not sitting/lying in one position for too long.

Latex 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 about skin related issues, please visit these Spina Bifida Association websites:

What you can do

Regular health checks

Every child needs a primary health care provider (for example, a pediatrician, family doctor, or nurse practitioner). In addition, a child with spina bifida will be checked and treated by doctors specializing in different body systems. 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.

Safety

Safety is an important issue for children with spina bifida. They can be at higher risk for injuries and abuse. As they become more independent, caregivers should teach them how to stay safe and what to do if they feel threatened.