How Spina Bifida Affects School and What Parents Can Do to Help Their Child

Dr. Jane Schreiber, neuropsychologist at Children's Hospital of Philadelphia, recently published an article in the Journal of Neurosurgery detailing the cognitive profile of children with myelomeningoceles. The article describes some of the common neurobehavioral issues and how early recognition and intervention can possibly impact a child’s overall outcome. 

Here, we break down how spina bifida can affect a child’s performance in school, and how parents can help advocate for them.

How can spina bifida affect school?

Most children who had a myelomeningocele have an IQ in the average to low average range. Language is often a strength while executive functioning, reading comprehension, visuospatial skills and sequencing may present as challenges. Every child is unique and these strengths and challenges can vary depending on medical and environmental factors.

• Executive function - This is a broad group of mental processing skills that enable an individual to plan in advance, participate in goal-directed behavior, problem solve, focus attention, control impulses, stay organized, and remember instructions. Challenges with executive function may result in misunderstood instructions, missed assignments, forgotten tests, or poor impulse control. Even when children with spina bifida understand what they see or hear, they may have difficulty remembering it. Challenges with executive function can also cause difficulty with motivation and remembering to perform self-care regimens.
• Reading comprehension - Children with spina bifida often excel at letter identification and sight word reading. Difficulties may arise later in school when children are expected to extract meaning from sentences or paragraphs. This can manifest in the third or fourth grade when students graduate from “learning to read,” and begin “reading to learn.”
• Visuospatial and visual motor integration skills - Some children with spina bifida have challenges related to visual spatial analysis, eye-hand coordination and depth perception. This can make handwriting particularly difficult.
• Sequencing - This is the ability to arrange thoughts and actions into a specific order to accomplish a task. Children with spina bifida may have difficulty organizing their thoughts and ideas. This becomes apparent during math, telling time, counting change, writing a story, following multiple step directions, etc.

How can I help my child?

You are your child’s best advocate! You can advocate for your child by pursuing an individualized education program (IEP). This is an educational plan tailored to a student’s unique needs. It is a legal agreement that sets learning goals and describes what services and modifications the school will provide to reach these goals.

In order to be eligible, a child’s academic performance/ability to learn must be adversely affected by one of 13 outlined conditions. Children with spina bifida typically qualify for an IEP due to a “specific learning disability” or an “orthopedic impairment.”

After receiving an IEP evaluation request, legally the school must respond within a specific period of time. An IEP is created by a team that includes the child’s parent/guardian, the child’s general education teacher, a special education teacher, a school psychologist, and the student if appropriate. The IEP team reviews the IEP at least once per year. Consider bringing an educational advocate to the IEP meeting and ensure that both your child’s physical and learning needs are met.

An IEP can address the following:

• Reading comprehension - If your child has difficulty with reading comprehension, IEP accommodations may include providing reading comprehension questions prior to the reading assignment. Small group sessions with evidenced-based approaches, additional time for tests, or assistive technology such as tablets with highlighting and notetaking capabilities may be helpful.
• Handwriting challenges - Children with handwriting challenges may benefit from occupational therapy, a pencil grip and slant board, a dedicated notetaker, recorded lectures, a provided study guide, or assistive technology such as speech-to-text or a laptop.
• Attention and impulsivity deficits - IEP accommodations may include preferential seating in the classroom to limit distractions, clear instructions broken down step by step, a “peer buddy” to compare notes and assignment due dates, or a “secret signal” from the teacher prior to important instructions. Regular breaks are helpful.
• Challenges in sequencing – These challenges can be overcome with breaking complex tasks into smaller steps and providing both written and picture-based directions. In addition, teaching pneumonic devices and verbal rehearsals (repeating things over and over) can be beneficial.
• Organization - Use an assignment notebook or online portals to help your child track assignments. Consider emailing the teacher important assignments so they are not lost in transit. Provide a visual daily schedule. Break down assignments into smaller steps with a timeline for completion of each step. Provide folders and baskets to keep backpacks, desks and lockers organized. Frequent communication with the teacher is crucial.

Personalized neuropsychologic evaluation

As a patient in CHOP’s Spina Bifida Program, your child may be eligible for a personalized neuropsychologic evaluation at CHOP to better understand your child’s learning profile. Contact us for more information.

Reference: Foss S, Flanders TM, Heuer G, Schreiber JE. Neurobehavioral outcomes in patients with myelomeningocele. Neurosurg Focus. 2019;47(4):E6.