Janie, age 8, uses forearm crutches to get around her school. Though it takes her a bit longer to make it down the hall, in general she can keep up with her friends and loves her school. Alfredo, age 15, uses a wheelchair for his mobility and does a pretty good job when it comes to taking care of himself and getting to his classes. Both Janie and Alfredo have Spina Bifida and in both cases their families and schools have made accommodations to adapt curriculum, the environment and education to meet their unique learning and physical needs. The support they receive is noticeable.
Spina Bifida is a birth abnormality where there is incomplete closing of the backbone and membranes around the spinal cord. There are three main types: occulta, meningocele, and myelomeningocele. The most common site of the opening is the low back. Occulta is mild in nature and may include a swelling, hairy patch, or dark spot on the back. Meningocele typically causes mild problems, as there is also a sac of fluid in the same spot. Myelomeningocele, also known as open spina bifida, is the most severe form. Associated problems might show challenges in walking, bladder control, hydrocephalus, and even latex allergies.
It would be easy to avoid physical activity with such children and adults as the challenges they live with can make it quite difficult to lead an active lifestyle. But with support, creativity and a passion for movement, everyone can benefit.
Let’s look at some key areas to consider when addressing the physical needs of individuals with Spina Bifida.
Is the environment accessible? Can bathrooms, sinks and toilets be accessed? Are physical education programs in place that are inclusive? Are the right mobility devices chosen based on current physical limitations and do they fit properly?
Range of Motion
With limited movement, usually in the lower body, it’s really important that positioning (seating, standing if able and lying down) be addressed so that functions such as respiration, socialization, digestion, and bone structure not be compromised. This means ROM (Range of Motion) is imperative as a daily activity. Starting with the lower extremities (legs and lower trunk) each joint needs to be stretched to elongate shorted muscles (which may occur with prolonged sitting in wheelchairs) or maintain the length of muscles within normal range. A skilled physical therapist can instruct proper range of motion techniques. Props such as bolsters and wedges can also be used to create a prolonged stretch or proper position.
Upper body strengthening is crucial for those using wheelchairs or assistive devices for walking. Activities such as push-ups pull ups, conditioning and even ball play can be used to tone and strengthen the upper body. Wheelchair exercises can be incorporated into physical education or exercise classes. For those who can stand, using a stander daily can help improve both muscle and bone strength.
Cardiovascular activity can be challenging but it is imperative. Benefits will include good heart health, respiration, circulation and mental well-being. Wheelchair activities such as pushing, wheelchair basketball, wheelchair races as well as adaptive biking and swimming are just a few examples.
This is where everyone, including children with special needs can learn to integrate sensation and motor abilities. Balance requires the use of both sides of the body and the brain. Using items such as pillows, rocking boards, balance beams, rocking chairs, bicycles, scooters and swings, balance can be challenged and mastered so that our day to day activities such as walking, stepping, reaching, climbing and jumping are performed at their best level.
Coordination implies the ability to orchestrate our muscles to perform specific tasks such as getting dressed; throwing, catching or kicking a ball; dancing, playing games and even skills such as handwriting. By using tools and toys to encourage coordination, skills can be practiced and mastered. Coordination can be accomplished at a table with activities such as playing with putty, building Legos, cooking, playing with magnetic tiles and doing an art activity. It can also be accomplished through heavy work activities such as doing chores like vacuuming, washing dishes, emptying trash, making a bed or wiping down surfaces. Do not minimize an individual’s ability to perform such tasks based on their current ambulatory status. Everyone deserves the right to work hard!
October is National Spina Bifida month so to bring awareness, let’s take this moment to recognize the challenge that individuals living with Spine Bifida face as well as give encouragement and re-evaluate the resources we provide. We also honor the families, parents, teachers, therapists and other professionals who are making a difference in their lives.