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IFSBH - International Federation Spina Bifida and Hydrocephalus

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Our vision of the future is a society that guarantees the human rights of all people born with spina bifida and hydrocephalus, and which celebrates their contribution in all areas of life. A society that also practices primary prevention of neural tube defects and hydrocephalus.

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National Organization for Rare Disorders

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Spina Bifida Association - National Organization for Rare Disorders

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About physical disabilities

Physical disability affects a child's ability to move, or to control their body movements. Children differ in how much their movement is impacted as there are many different types and causes. This includes paralysis (inability to move one or more limbs), problems with muscle tone, reduced balance, reduced ability to make larger or gross motor movements (e.g. challenges with walking and running), and reduced ability to make smaller or more precise movements (e.g. challenges with writing and doing up shoe laces). Common causes of physical disability include acquired brain injury (e.g. after a stroke), spinal cord injury, cerebral palsy, spina bifida, loss of limbs and muscular dystrophy. Some children with physical disability will walk independently, while others will use mobility aids (e.g. ankle supports, crutches or wheelchairs).

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Educator Strategies for Physical disability | AllPlay Learn

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Learn about physical disability in young children, understand common strengths and use evidence-based strategies to support children with physical disability, consider the Early Years Learning and Development Outcomes, and view relevant resources that can help to create an inclusive environment at early childhood education and care settings.

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Inclusive classroom spaces teach our students about the fundamental importance of inclusion and equality. They ensure our classrooms are accessible to all and enable every student to feel a sense of belonging.

We need to think about inclusion in every aspect of a classroom layout. As set out in the UN Declaration of Rights for People with Disabilities, all students with disabilities have the right to full participation in the daily life of a classroom.

Below are some important considerations for a teacher designing a space for students with physical disabilities.

1. Minimize Distances Traveled

Students with physical disabilities may find it difficult to travel between spaces in the classroom. To minimize travel distances for students with disabilities, ensure there is ample open space between workstations that allows ease of access to all areas of the classroom.

A horseshoe-shaped workstation, for example, might be insufficient for students with physical disabilities, as it requires taking long detours around the classroom.

2. Make the Whole Classroom Accessible

Mobility does not simply involve access between the student's desk and the door to the classroom.

Seating a student with a disability by the door or placing them at a separate desk may appear convenient and easy. However, it physically separates students from their peers and learning materials.

Similarly, giving a student with a disability a dedicated and separated space in the room also sends a damaging message to the student that they are an inconvenience.

Therefore, ensure students with disabilities are able to move around the whole classroom so that they can participate in all workstation and group-work activities. In particular, aim to ensure all pathways, desks, and computer workstations are accessible for students with physical disabilities.

Another common issue is clutter on the floor preventing students with walking aids or wheelchairs from moving around freely. Ensure all students are keeping their bags, pencil cases, and other belongings neatly stored at all times.

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3. Make All Materials Accessible

It is not always possible to place all materials at accessible heights and locations. However, I focus on placing the most commonly utilized classroom materials in the most accessible spaces. Whenever possible, I aim to make all regularly utilized materials accessible for students with physical disabilities.

While reach may be the primary concern when thinking about accessibility, it is not the only one. I have had several students with limited fine motor skills, for example. A solution here is to place all commonly used materials in drawers with large, easy-to-grasp handles.

4. Think About Lesson Transitions

Lesson transitions are often a pivotal moment in which a student's physical disability must be treated with sensitivity. Teachers may need to be proactive in giving subtle signals to a student with a physical disability to begin preparing for a lesson transition earlier than their peers.

Students with inhibited eyesight, for example, may require additional time to pack their belongings. Students who need walking aids may require additional time to set them up. By providing early warnings to these students, teachers can prevent instances where the student is singled out as 'running late.'

5. Make Accommodations for Guests With Physical Disabilities

Often, teachers only consider the needs of students in their class. A teacher may only actively think about accessibility when they learn they will have a child with a disability in their class for the year.

However, many important classroom guests may also have physical mobility requirements. Parents with disabilities have as much right as any other parent to access the classroom. Teachers in the school with physical disabilities may also need to access your classroom from time to time.

Being prepared for these possibilities before the guest arrives makes the guest feel more welcome within the space. It also prevents situations in which people with physical disabilities are made to feel like an inconvenience.

Final Thoughts

While sometimes our ideal classroom space is not possible due to financial and architectural limitations, there are always small steps that teachers can take to make their space more inclusive. Bigger picture issues-such as getting larger and more modern classrooms-may require further advocacy and lobbying.

Inclusive classroom design shows our students with disabilities that they are valued and normalizes inclusive attitudes for all our students to emulate. Small acts by the classroom teacher to make the classroom a more inclusive space such as rearranging desks, being sensitive to transition requirements and removing clutter can go a long way toward creating a sense of belonging and inclusion in every classroom.
Do you have any tips on setting up inclusive classroom spaces? Come and share in our WeAreTeachers HELPLINE group on Facebook. Plus, 50 tips and tricks for making your teaching more inclusive.

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How to Create Inclusive Classroom Spaces for Students With Physical Disabilities

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How can teachers create more inclusive classroom spaces for students with physical disabilities? Use these guiding principles to start.

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Spina Bifida: Causes, Signs & Prevention During Pregnancy

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New technological breakthroughs can minimize complications in children with spina bifida. Even better, you can substantially lower your baby’s risk during pregnancy.

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Learn about health issues and treatments for infants with spina bifida.

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Now, babies are having surgery to close up their exposed nerves before they are born!

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Fetal surgery for spina bifida (myelomeningocele, MMC)

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Fetal surgery for spina bifida (myelomeningocele) is surgery to close the opening in the spine while a fetus is still in the womb to protect the spinal cord from damage.

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Living with Spina Bifida School Age Children

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Living with Spina Bifida School Age Children

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Centers for Disease Control and Prevention

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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, 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 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 using a tablet or laptop computer to take notes, and making sure they have a wheelchair accessible environment at school.

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

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

Children 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:

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 website:

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 every day 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.

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
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, other 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.

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Living With Spina Bifida: School-Aged Children | CDC

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Spina bifida is a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect (NTD). Many children with spina bifida do well in school, but some can experience difficulties. Learn more...

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Spina Bifida Causes, Symptoms and Treatment

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Spina Bifida Causes, Symptoms and Treatment

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nside the classroom, make sure surfaces are flat, there are no trip hazards, and provide the student with a height adjustable desk to accommodate their wheelchair as needed.

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Centers for Disease Control and Prevention

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Facts, causes, signs, diagnosis, and treatments.