Learning Among Children with Spina Bifida
Donald J. Lollar, Ed. D.
The incidence of Spina bifida in most areas appears to be decreasing in recent years. Emphasis on medical advances has been maintained with the advent of magnetic resonance imaging (MRI), bladder augmentation, new orthotics, shunt materials, etc. Still the children, adolescents, and young adults with spina bifida are often struggling to find their way toward substantive education, gainful employment, and autonomy in daily living.
Initially, this issue for Spina bifida children and parents was survival; followed by orthopedic problems, and bowel and bladder incontinence. As these young people as a group continued to experience dependence problems, professionals and parents placed emphasis on the emotional dependence which was often evidenced within the families. Paralleling these developments has been a continued effort to understand the neurological sequelae of Spina bifida, including hydrocephalus and Chiari malformation.
Along with these difficulties, on the positive side, these young people are often socially adept and good with words. As preschoolers, they are often hard workers with courage and motivation. They do/did not begin with as many difficulties early, but these may come as more independence is expected. These early strengths set the stage for expectations of normalized functioning in daily living skills. Even assuming family dependence, it has become apparent that other factors interfere with progress toward independence.
Parents and observant teachers, health care professionals and friends have seen problems with motor skills, attention, memory and organization. Knowledgeable professionals also have known that some of these characteristics are often associated with hydrocephalus, present in most of the children with spina bifida (approx. 80-90%). Recently, however, there has begun a concerted effort to identify, understand, and begin to intervene in the learning problems often present in children, adolescents, and young adults with spina bifida and hydrocephalus.
OVERVIEW OF RESEARCH
Most research has related medical aspects of Spina bifida and hydrocephalus to scores on tests of intelligence and acaden-dcs. Researchers on different continents have found common trends regarding physical aspects of Spina bifida.
RECOGNIZING LEARNING PROBLEMS AND ASSESSING THEM
As we acknowledge that children with spina bifida do have learning problems, we are better able to recognize them and help. Often parents or teachers notice that something is interfering with a youngster's success at school but they are not sure what is wrong. At this point, parents and teachers need to work closely together to figure out the various learning strengths and problems the child may have. In addition, it often helps to have a psychological evaluation, which would evaluate a child's intelligence, academic levels (e.g. reading, spelling, math), and basic learning abilities (e.g. visual perception, receptive and expressive language skills). Because of more basic learning problems, it is helpful to evaluate neuropsychological functions. These include attention, perceptual-motor processes, reasoning and problem solving, organization and sequencing skills, and memory.
When this information is integrated, a learning profile can be developed for each youngster. This includes the child's learning strengths and problem areas. With this information, parents, teachers and health professionals can assist the child to learn more effectively.
LEARNING PROFILES AND IEP'S
The learning profile is important for health professionals in helping parents and children learn selfcare skills such as independence with bowel and bladder care. It is important at school for teachers to present academic material effectively and use appropriate materials. The profile also helps the school set up the Individual Educational Program or IEP when it is needed. This is one part of the Public Law 94-142 which insures appropriate education for all children who have handicaps to their learning.
Sometimes there are misunderstandings or differences of opinion among parents, school and health professionals. Since the best interest of the child is always the heart of decisions, it is important for all parties to be as helpful and understanding as possible. Parents have help if they feel their youngster is not receiving appropriate services in the schools. There is what is called "due process" which gives parents a way of appealing decisions they believe are not helpful to their child.
Several issues may come up. Often, children with spina bifida are automatically placed in regular classes, or a class for orthopedically handicapped children. While this is frequently the best placement, there are many children whose orthopedic problems are secondary to their learning problems. The "learning disability" associated with spina bifida, then, can be a major disability. The disability should be understood and addressed in any I.E.P.
Children with physical disabilities often are described by their disability, and not by their strengths or abilities. All children have characteristics or skills better than other abilities. Any instruction should highlight relative strengths in a child's learning and personal attributes. This will also apply to academic subjects. Children usually have certain subjects in which they are better.
Beyond learning problems, a large percentage of children with spina bifida have average intelligence and strong verbal abilities. This usually allows good social skills and the ability to get along with others. Specific learning and personal strengths should be used to counter balance learning weaknesses.
While the child with spina bifida may not be considered as learning disabled by State or Federal guidelines, "learning disabilities" or individual learning weaknesses do exist. Lets review these:
PERCEPTUAL MOTOR PROBLEMS
Children with shunted hydrocephalus often have problems with eye-hand (visual-motor) activities. Visual perception problems mean the child may have problems "seeing" things in their head, finding their way around, and generally being less coordinated. Fine-motor skills are often rather poor among spina bifida children. Together these weaknesses typically interfere with the ability to move around, use materials or tools and perform academics such as reading, arithmetic and writing.
Children with spina bifida sometimes have a hard time understanding things even though they seem to understand. This is particularly true of some kids who speak well, but when they have to explain what they said, or respond to questions, they seem disorganized, and talk about irrelevant things. They may change the subject in the n-dddle of what they are saying.
This problem usually goes away by the time the child is about 10 years old but comprehension problems often go beyond this age. When it goes beyond this time, working to make it better is difficult. Several strategies can be used to help children who are having trouble understanding.
It is quite common for children with spina bifida to have trouble paying attention to parents, teachers, friends, tasks, etc. This at times gets mixed up with a child being emotionally self-centered and not being attentive to other people's needs. Both may be true. Inattention, however, is particularly a problem in school. Children may miss assignments, miscopy assignments or work, generally be slow in completing work (beyond visual-motor speed problems), or miss social cues from others. Children with spina bifida generally are better able to pay attention when listening than when seeing.
HYPERACTIVITY / IMPULSIVITY
Children with spina bifida often exhibit restlessness and are fidgety. It is often surprising to teachers or even parents who think since an orthopedic disability slows the child down, they can't be hyperactive. But this is not surprising when one is aware of visual-motor problems. While the physical impairment may mask the restlessness, it is often present. Often associated with inattention and hyperactivity is impulsivity Children who are impulsive act before they think. This lack of stopping and thinking often gets them into trouble because they end up doing things quickly and carelessly, which gets them into trouble with adults and friends, and can be unsafe.
Children with spina bifida often have difficulty in remembering things they see or hear. Even if they understand it, they may not remember it later. So it's like they have to learn it over and over again. This can happen when people are telling them things to do or when they are copying assignments from the board. It seems hard to remember one thing, while they're trying to do another.
Children with spina bifida may have trouble keeping things organized. This is clearly seen when school materials, papers, etc. need to be in order. Things tend to get lost or misplaced, creating frustration, anxiety, and anger among parents, teachers and even the child, at times.
Children and adolescents with spina bifida often have trouble keeping ideas or doing activities in their proper order. This problem may be related to not paying attention, not remembering or not being organized. The result is the same - the child, parent and/or teacher begin to feel confused and frustrated because the steps are there - just mixed-up. It may also seem that the child or adolescent doesn't understand or comprehend the situation or question. These sequencing (ordering) problems can be seen in the school subjects of math and written language. It is also seen in not being able to tell time and count change. The young person can verbally tell a good story or report what they've seen in an orderly way until they have to write it down. They cannot organize (sequence) the ideas in their head.
DECISION MAKING / PROBLEM SOLVING
As you can imagine, if any person has trouble paying attention, remembering information, organizing things and keeping ideas in order, they will probably have difficulty making decisions and solving problems. Making a decision is a different process from solving a problem. One makes a decision when he/she has two or three choices and has to choose one of them, for example, what to eat or what to wear. Solving a problem usually means that you have a situation that requires you to use what you've learned in the past to solve a new problem now.
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Spina Bifida Association of America
4590 MacArthur Boulevard, NW
Washington, DC 20007-4226
Although every effort is made to assure that information is accurate and current at the time of publication, the reader is advised that knowledge in thefield of spina bifida is grozving rapidly. The reader is referred to the SBAA National Office and to qualified professionals with experience in this field. In addition, specific cases may vary from the necessary general information presented here, and should be reviewed by qualified medical and other professionals on an individual basis.