Becky Truly EDU 214-871/Spring 2014 Professor Lara

DEFINITION
Spina bifida is a birth defect that occurs in the first 28 days of a babies development in the womb. The bones in the spine do not properly form around the spinal cord which, in some cases, allows the spinal cord and surrounding material to protrude out of the babys back. Spina bifida usually occurs in the thoracic (bottom of neck through to the curve of the back), lumbar (lower back), or sacral regions (tailbone) of the spine. Generally speaking, lesions in the thoracic region result in the most motor and sensory system disruption and those in the sacral region result in the least. 3 Types of Spinal Bifida *Occulta, the mildest, is often undetected as it does not have many symptoms. An opening exists in the vertebrae, but the spinal cord is not damaged. Most people with this type would never know they had spina bifida until another health issue required an x-ray of the back. *Meningocele, presents itself with fluid leaking from the spine and pushing against the skin of the babys back. A bulging sac is visible. There is no damage to the spinal cord and surgery often repairs the problem. *Myelomeningocele is the most rare, and severe type. It is the form that most people associate with the term spina bifida. This type presents itself with part of the spinal nerves pushing out of the spinal canal and you may see a bulge in the skin on the babys back. Depending on where the sac is located along the spine, there are varying degrees of neurological problems. The nerves are most often damaged, which results in problems with walking, bladder and bowel control, breathing, swallowing, and coordination.

My legs are weak, but my heart is strong. I have a voice and I belong. They cant take my value away.
Jean Driscoll - - USA Paralympic Games Athlete

CAUSES

What causes spina bifida remains a mystery.

90-95 percent of babies born with spina bifida are born to parents with no family history of spina bifida

Doctors do not yet know what disrupts the complete closure of the neural tube which causes the malformation to develop.

What scientists SUSPECT

Research indicates that insufficient intake of folic acid (vitamin B) in a mothers diet (before and during pregnancy) is a key contributing factor to causing spina bifida. Genetics has also been found to play a role. (Women who have one child with spina bifida or other neural tube defect are at greater risk of having another child born with it; about a 1 in 20 chance.) Medications (A link has been found between spina bifida births and mothers who were taking medications for epilepsy and mood disorders.) Diabetes (Increased risk is possibly due to the excess glucose in the blood which may interfere with the babys development.) Obesity

More than 160,000 people are currently living with spina bifida in the US.

We are all born with great potential. Shouldn't we all have the chance to achieve it?
(Kennedy Krieger Institute) Hispanic women have the highest rate of having a child affected by spina bifida compared with NonHispanic White and Non-Hispanic Black women

Spina bifida affects approximately 1 out of every 1000 newborns in the U.S

Families, educators, and health care professionals have seen that some children with spina bifida often have average to low average IQs and have limitations with motor skills, memory, and organization. Each individual childs diagnosis is unique and comes with its own special needs based on the type of spina bifida. Therefore the most successful educational plan is one that is developed to meet each particular students needs, often after psychological and neuropsychological testing has been completed. Testing will pinpoint individual strengths and deficits and support the IEP team in developing goals that are a best-fit for that child. Learning Concerns to keep in mind: Perceptual Motor Problems (children with shunted hydrocephalus have poor eye-hand coordination and ineffective motor skills) Comprehension (children sometimes struggle to understand concepts) Attention (children may struggle to pay attention, overlook social cues, or complete work more slowly and struggle to keep up) Hyperactivity/Impulsivity (physical impairment might hide restlessness, but they may end up doing things quickly or carelessly) Memory (children may understand what they see and hear, but have difficulty remembering it, especially if it has multi-steps) Organization (physically may not be able to organize materials or may have trouble with executive functioning) Sequencing (will often have trouble keeping ideas straight, or completing activities in the proper order) Decision Making/Problem Solving (these usually require one to use what was learned in the past and memory may impact the childs ability to recall information to problem solve) Physical Limitations vary, but keep in mind: Students may be able to walk with leg braces or may have paralysis and be wheelchair bound. Some may be able to communicate verbally while others may be on ventilatory support and need assistive technology to communicate (Dynavox T10, sign language charts, etc.) These learners may fatigue more quickly than their peers as their body must work harder to perform tasks. They are out of the class more than peers due to health issues that need to be tended to (bladder/bowel/breathing tubes).

Impact on Learning & Physical Limitations

Family & Community Resources National Resource Association www.spinabifidaassociation.org 4590 MacArthur Blvd NW Suite 250 Washington, DC 20007 800-621-3141 Kennedy Krieger www.kennedykrieger.org 707 North Broadway Baltimore, Maryland 21205 (800) 873-3377 References
Center for Disease Control and Prevention. (2013). Retrieved from http://www.cdc.gov/ ncbddd/ spinabifida/. Kennedy Krieger. (2012). Retrieved from http://www.kennedykrieger.org/patient-care/diagnosisdisorders/spina-bifida. Rose, B., & Holmbeck, G. (2007). Attention and Executive Functions in Adolescents with Spina Bifida. Journal of Pediatric Psychology, 32, 983-994. Spina Bifida Association. (2012). Retrieved from http://www.spinabifidaassociation.org. Taylor, R., Smiley, L, & Richards, S. (2009). Exceptional Students. Boston: McGraw Hill Higher Education.

The Parents Place of MD www.ppmd.org/ 801 Cromwell Park Drive Suite 103 Glenburnie, MD 21061 (410) 768-9100

Work closely with family, occupational therapist and special education team to adhere to the childs educational plan. Develop a strong rapport with the child, his/her family, and the school based health care professional assigned to the child. Lesson plan with the childs limitations in mind, as well as his/her strengths. Explicitly teach skills (skimming/scanning, how to use eye movements, social cues). Ensure classroom is free from clutter and all student resource areas are accessible (especially if wheel chair access is needed). Ensure that chalkboard/Smart Board is eye level for the student. Adapt Phys. Ed. & classroom activities to ensure ALL students have access to the curriculum regardless of limitations. Ensure access to a large writing area/desk to compensate for gross motor limitations. Encourage Every Pupil Response so ALL students can participate (thumbs up/down, etc.) Foster social relationships with peers

A new study in the New England Journal of Medicine says that if a baby is operated on while still in the uterus, the most serious complications of the worst form of spina bifada, myelomeningocele, can be lessened.
www.cnn.com/2011/HEALTH/02/09/surgery.spina.bifada/

Adaptive/Assistive Technologies Cognitive orthoses (devices which compensate for a cognitive weakness) could include PDAs, digital voice recorders, smartphones, and tablet computers (laptops or IPADs). These are especially good solutions for people with Spina Bifida because they are small and can go everywhere. As well there is no stigma associated with their use; due to the popularity of the devices. Everyone is using them.

Teaching Strategies