Spina Bifida

Presentation By: Becky Truly

EDU 214-871 Spring 2014 Professor J. Lara

Presentation Objectives
This presentation will provide an overview of spina bifida which is a birth defect occurring in 1, 500 births each year in the United States. Educators will gain a deeper understanding of this disabilitys impact on students in the classroom and will learn teaching strategies to help develop an inclusive classroom, one where ALL students have access to the curriculum.

Opening Activity
Which of the following children have spina bifida?
A

Answers later on! Slide # 18

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.

Causes
What causes spina bifida remains a mystery. Doctors do not yet know what disrupts the complete closure of the neural tube which causes the malformation to develop.

What scientists have learned so far

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

What region of the spine is affected?

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.

Three Types of Spina 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.

What is Spina Bifida ?

Click on the link below to watch a video from doctors at Childrens Hospital of Philadelphia as they describes this birth defect.
http://www.youtube.com/watch?list=PLEDDD5EA59E632069&v=6Ii_v3t9hpU&feature=player_detailpage

(Retrieved from YouTube video: Childrens Hospital of Philadelphia)

Statistics
More than 160,000 people are currently living with spina bifida in the US.
Spina bifida affects approximately 1 out of every 1000 newborns in the U.S. 90-95 percent of babies born with spina bifida are born to parents with no family history of spina bifida. Hispanic women have the highest rate of having a child affected by spina bifida compared with Non-Hispanic White and Non-Hispanic Black women. Overall prevalence 14 % higher among females than males. 80% of persons with spina bifida will have hydrocephalus or an excessive accumulation of cerebral spinal fluid in the brain.

Impact on Learning
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)

Teaching Strategies

Work closely with family, occupational therapist and special education team to adhere to the childs educational plan. Work as a team to understand the unique needs of the student. He/she may need to leave class for medical issues regularly. They may need assistive technologies due to fine/gross motor limitations, as well as their mobility. It is best to meet with the team early on in the school year, so that you gain a clear understanding of what is involved in creating an inclusive environment for that student.

Develop a strong rapport with the child, his/her family, and the school based health care professional assigned to the child. The health professional that will be in class with the student plays an important role in managing his/her health. Become comfortable with that individual being in your classroom and develop a rapport with them. They know the student well and will be able to notice when he/she needs to leave the room to address health concerns. You should also become aware of distress signs (more lethargic than normal, trach tube slurping sound might indicate the tube needs suctioning, rosy cheeks may indicate child is not feeling well, etc.).

Teaching Strategies
Lesson plan with the childs limitations in mind, as well as his/her strengths. Never assume that a student with spina bifida will be cognitively unable to perform tasks. Learn their strengths so you can incorporate those skills into lessons. Plan (long and short term) lessons being mindful to be inclusive, as you would for a weak math student, a student with ADHD, or a student who is gifted and talented. Become thoughtful, in your planning, of ways to meet the needs of a student with spina bifida. Use the SMART Board and allow them to walk or wheel up to the board to complete one of the lower activities on the board. Ensure desks and chairs create space around the room for them in their walker or wheelchair. Make pencil sharpeners, tissues, and other student materials, accessible by putting them on shelves that are accessible to EVERYONE. Little things can be easily done, to make the child with spina bifida feel like everyone else in the class.

Explicitly teach skills (skimming/scanning, how to use eye movements, social cues). Students with spina bifida often have a shortened stamina. Their body is working much harder just to breathe/swallow/walk/motor around, etc. Be aware of cues that they are getting tired. They may also be more easily distracted than peers. Be sure to make eye contact when giving directions, or move closer to the student to keep their attention and keep them engaged.

Teaching Strategies
Ensure that chalkboard/Smart Board is eye level for the student. Position their desk or work area so that they can easily see the board where instruction is taking place. If using a document camera, be sure to zoom-in whenever possible. Adapt Phys. Ed. & classroom activities to ensure ALL students have access to the curriculum regardless of limitations. Try to ensure that every activity you plan is something that every child in the room can participate in. Brainstorm inclusive strategies with the schools occupational therapist, special educator, teachers assistant and health care professional. There are often solutions out there and the more adults thinking about a solution, the more likely one will be found. Ensure access to a large writing area/desk to compensate for gross motor limitations. While giving them a large surface to write on, be sure that their desk is not away from peers. A desk at the back of the room or off to the side, does not allow for the child to be part of the class. Consider grouping desks around his/her work station, or using tables for your classroom so that they can wheel up to the group and be an active participant.

Teaching Strategies
Encourage Every Pupil Response so ALL students can participate This is especially important if the student is not verbal (has ventilatory support and cant speak). Asking the class a question and having them answer with a Thumbs Up or Down, tap your head, or hold up yellow/red card, allows the student with spina bifida to participate as well (as long as they have fair gross motor control).

If the student is using an assistive device to speak (Dynavox, or Vanne) be sure to include them in discussions as well. Have them look ahead at a question and prepare their answer in advance. (If discussing questions #1-5, perhaps have them type their answer to # 4 while the other students are answering # 1-3. When you are ready to discuss number #4, the student can have their device speak their answer.) This may feel a bit awkward at first as there is sometimes a bit of lag time, but it is SO very important in helping the student feel like a part of the classroom community.

Teaching Strategies
Foster social relationships with peers
So often these students are not able to fully participate in recess, and dont often get to visit other friends at their homes. It is important for you to help foster relationships in the class whenever possible. Provide opportunities for partner work and group work whenever possible. Encourage the students to communicate with sign language. Encourage peers to be patient when their peer is typing to them using a Dynavox or Vanne system. Avoid using food rewards in the classroom Some students with spina bifida may have feeding tubes. Eliminating food rewards is not only healthier for ALL children, but it eliminates the student with spina bifida from ever feeling excluded.

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. Dynavox or similar technology https://www.mydynavox.com/Solutions/T10#MeetTheT10

Answers to the Opening Activity

Child A and B and C have spina bifida
Child D could have spina bifida occulta
Just looking at your students is not a fair method to assess whether or not they may have special needs. Be sure to get to know ALL of your students as individuals.

Work with your schools Special Education team to learn about your students IEPs and understand how you can plan lessons that will provide ALL students, regardless of limitations, the same access to the curriculum.

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 spina bifida myelomeningocele, can be lessened.
www.cnn.com/2011/HEALTH/02/09/surgery.spina.bifada/

Click on the link below to watch a YouTube video, posted by the Childrens Hospital of Philadelphia, where they are performing these types of breakthrough surgeries.
http://www.youtube.com/watch?v=qRtspxmhYnA&list=PLEDDD5EA59E632069&feature=player_detailpage
(Retrieved from YouTube video: Childrens Hospital of Philadelphia)

What Have You Learned?

Answer the following True or False questions to find out!
1) Spina bifida usually occurs in the cervical region of the spine. 2) More severe types of spina bifida are identifiable by a bulging sac of fluid on the babys back. 3) Hispanic mothers are less likely to deliver a spina bifida baby than Caucasian mothers. 4) Spina bifida is most likely caused by an insufficient intake of folic acid during pregnancy. 5) Surgery can be performed on a fetus, during pregnancy, which will greatly improve the quality of life of a spina bifida baby once it is born. 6) Students with spina bifida should be given every opportunity to achieve their potential, and to have the opportunity to do so in classrooms with their peers.

Answers!
1) FALSE Spina bifida usually occurs in the cervical region of the spine. (usually occurs in the thoracic, lumbar, and sacral regions)
2) True More severe types of spina bifida are identifiable by a bulging sac of fluid on a newborn babys back. 3) FALSE Hispanic mothers are less likely to deliver a spina bifida baby than Caucasian mothers. (Statistic have shown that Hispanic mothers are MORE likely) 4) True Spina bifida is most likely caused by an insufficient intake of folic acid during pregnancy. 5) True Surgery can be preformed on a fetus, during pregnancy, which will greatly improve the quality of life of a spina bifida baby once it is born. 6) ABSOLUTELY TRUE!!!! Students with spina bifida should be given every opportunity to achieve their potential, and to have the opportunity to do so in classrooms with their peers.

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

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 Childrens Hospital of Philadelphia. (2014). http://www.chop.edu/video/fetal-surgery-spinabifida/spina-bifida-video.html