Genetics Northern California

Education and learning issues

Individualized Educational Plan (IEP)
Parents are the most powerful and important advocates a child can have when it comes to scholastic achievement and educational opportunity. Schools are obliged to listen to parents.

The Spina Bifida Clinic recommends that you begin to closely monitor your child's academic and social progress from the time they begin school through high school and beyond. An Individualized Educational Plan (IEP) or a 504 Accommodation Plan can assist your child in obtaining the type of services, support, equipment, and resources they need to succeed both inside and outside of the classroom. An IEP or 504 plan should be a standard part of any disabled child's academic portfolio.

Included in these plans should be activities and strategies aimed at ensuring full opportunity, ability, and participation in their school experience, including training in academic skills, work skills and social skills. Self-care goals can also be incorporated into the plan. Depending on your child's age, developmental stage, and abilities, their needs will vary. Consequently, the strategies that work for each child will vary.

Sometimes parents resist the IEP process, viewing it as special treatment that only draws further attention to their child's differences. Remember that the school's regular curriculum is not designed to address individual differences in ability. In general, it is a "one size fits all" approach to imparting knowledge and fostering socialization.

Children with special challenges, including those with special learning needs are at risk psychologically and academically without plans for intervention. The IEP is an attempt to "level the playing field" for children with disabilities, and to eliminate unintentional discrimination within the school setting. Ask yourself whether your child will feel "less different" when he or she achieves appropriate, reasonable, and attainable goals rather than struggling with, or failing to meet goals that are not appropriate for their skill level in the first place.

Tailoring the IEP
Every child is an individual, and components included in the IEP or 504 plan will depend on many factors, particularly the child's individual learning challenges.

Therefore, a child's IEP or 504 plan will need to be tailored to their unique strengths and challenges. A single "standard" IEP or 504 is not adequate. An IEP can be written to include direct training for skills in areas such as planning, organizing, studying, writing, social cognition and/or interpersonal communication. A 504 plan can be drawn up to outline one or more specific accommodations that the student may need, such as a lap top computer, a note-taker, or untimed testing.

To assess their individual needs, some children will require specialized testing that the schools cannot provide. For example, children with a Chiari II malformation, which is present in almost all children born with open myelomeningocele, should have neuropsychological testing, particularly if they are experiencing learning difficulties. Ideally this testing should be done before entering middle school.

Individuals with Disabilities Education Act
The Individuals with Disabilities Education Act (IDEA) mandates that a plan is developed to assist each student in special education to make the transition from school to adult life.

Transition service needs must be identified beginning at age 14 years, if determined appropriate by the IEP team, and updated annually. Transition plan goals may include school preparation, career exploration, vocational (work) training, and outside work experience in the community.

In reality, this does not mean that these services will happen automatically. Adolescents with disabilities and their families need to investigate what services are available within their community and push for them to be made available. Transition planning must include an assessment of the adolescent's interests and skills from which future career/vocational goals may be chosen.

Involvement in mentorships and volunteer activities before this time can provide valuable help to the teen in becoming aware of his or her interests, strengths and weaknesses. Independent living might be one identified goal addressed in an IEP. The development of skills such as cooking, household budgeting, using public transportation, finding and hiring personal care attendants, social skills and assertiveness training could all be included as goals.

Developing a system of social support, including peer support, is necessary in order to avoid isolation and depression. Ultimate success will depend on early encouragement and advocacy by family, health care providers, and school personnel, the acquiring of social skills, development of a support network, and the motivation of the person with spina bifida.

Nonverbal learning disorders
Nonverbal learning disorders (NLD) are associated with three conditions involving brain architecture and anatomy:

  • Chiari II malformation

  • Hydrocephalus

  • Absent or partially absent corpus callosum

Children with open myelomeningocele frequently have all three of these conditions. Individuals with spina bifida usually have an IQ that falls into the normal range, albeit low normal (IQ = 85-100). However, IQ scores in these children do not always reflect the child's actual performance. For example, the verbal abilities and IQ of persons with spina bifida are often higher than their "performance" (or non-verbal) abilities and IQ.  Children with spina bifida often do well in school during the early years. It is not until children are asked to do more complex tasks (in about the fourth grade) that these children may begin to have problems with certain subjects. Consequently, these learning problems may not be identified until children are in middle school or beyond.

NLD is a neurological syndrome that results in a person having areas of specific strengths and weaknesses.

Strengths may include:

  • early speech and vocabulary development

  • good rote memory skills

  • attention to detail

  • early reading skill development

  • strong auditory memory

Weaknesses may include difficulties with the following:

  • information processing and organizational skills

  • problem solving

  • memory-making

  • critical thinking

  • self-initiation (motivation)

Information processing problems may have a profoundly negative effect on school and job success, as well as on the individual's ability to live independently and care for him or herself.

NLDs are learning challenges that may help to explain why your child forgets to take medicine, fails to catheterize without repeated prompting, and does not complete school work in a timely manner. In addition to impacts on memory and school performance, individuals with NLD may also have trouble with visual processing skills. For example, they may have difficulty picking up on the nonverbal cues, like facial expressions and body language, of their peers. This may interfere with the development of social tact, negotiation skills, and self-reflection, and may result in an inability to see another person's point of view.

Every person is an individual. Specific learning challenges may vary from one person to the next, and the degree of learning disability will also vary. The good news is that there are educational strategies to help these children address their specific needs and flourish. One key is early intervention, including early testing (before age nine).

Testing results should include an outline of specific strategies, changes, and adjustments needed for the child to succeed. Starting a child early in their own self-care routines, like bladder catheterization, using a simple and consistent approach, will help to establish and reinforce a healthy lifestyle without relying as much on his or her short-term memory and organizational skills.

Having clear communication with school staff from the beginning of your child's education is important. Individual Educational Plans (IEP) for any child can include plans to teach to that child's strengths in order to avoid a decline in school performance just when the child is approaching adolescence.

If left unrecognized, unacknowledged, and unaddressed by parents and school personnel, learning disabilities, including nonverbal learning disorder (NLD) can lead to social and academic failure, placing the child at further risk. There is no cure for NLD, but with early screening and intervention some of the most damaging effects can be avoided.


Spina Bifida Clinic handout: Non-verbal Learning Disorder and Spina Bifida

To learn more about nonverbal learning disorder on the web, visit the following website:

The Association on Higher Education and Disability (AHEAD) is an international, multicultural organization of professionals committed to full participation in higher education for persons with disabilities. The association is dedicated to promoting excellence through education, communication and training. Website:

Think College is a US Department of Education website designed to provide information on educational opportunities beyond high school for learners of all ages. Website:

The Transition Coalition offers information, support and links to professionals, family members, individuals with disabilities and others interested and involved in the transition from school to adult life. Website:

Developmental delays/mental retardation
Developmental delay refers to a failure or delay in progressing through the normal developmental stages of childhood. Such delays may be related to cognitive (intellectual and reasoning abilities), emotional or physical impairments.

Mental retardation refers to subnormal intellectual development or functioning. The term generally indicates an IQ of less than 70. It may be congenital (present at the time of birth) or related to brain injury or disease which occurred after birth.

Not all children with spina bifida are cognitively impaired.  However, individuals with spina bifida tend to have "low average" cognitive ability. Mild degrees of mental retardation are not uncommon in this population of children.