Frequently Asked Questions

How should a teacher respond to classmate’s questions regarding a child who is affected by muscular dystrophy?

Accurate information is essential for peers to understand a classmates disorder. With accurate knowledge peers are less likely to tease and more likely to defend a given child against inconsiderate remarks made by others. Accurate knowledge will help to prevent peers from making assumptions and holding misconceptions about the disorder and the child with the disorder. The type of disorder, the nature of the treatment, and the ways the disorder may affect the child’s appearance, abilities, and behavior should all be explained. However, prior to providing this information to classmates, the teacher should discuss with the child and his or her parents their feelings about disclosing this information.


Are learning disabilities expected for children who have neuromuscular disorders?

For most neuromuscular disorders there is no direct link between the physical manifestations of the disorder and learning disabilities. However, learning disabilities have been associated with specific disorders. For instance, children with Duchenne muscular dystrophy (DMD) may have cognitive deficits accounted for by abnormalities to the protein dystrophin. The dystrophin gene has been found to code for both muscle and brain proteins. Eight start sites exist on the gene where the recipe for either the brain or muscle protein may begin. Because of mutations arising on different locations in the dystrophin gene there may be a large variation in cognitive functioning in these children; this includes those with above-average intelligence. Cognitive difficulties often arise from attention problems and not as a result of intelligence itself. More specifically, it was found that children with DMD have difficulties in the areas of attention focusing, verbal learning and memory, and emotional interaction. These difficulties hamper the ability to communicate and interact effectively with the environment. Educational and psychological interventions are often beneficial in accommodating for such difficulties and preventing them from interfering with learning. Teachers should be aware that limitations in physical abilities could often be misinterpreted as cognitive difficulties when this is not the case.


How might having a neuromuscular disorder affect a child’s behavior in school?

Poor behavior on the part of a child with a neuromuscular disorder might result from being unable to deal appropriately with their disorder or the potential issues that arise. These children may have pent up anger and emotions stemming from the unique issues they must face within their lives. They may feel sorry for themselves, feel angry that they have such a disorder, be self-conscious of their differences, or resent not being able to physically do the same things as others. They may resent having to depend on others for assistance, equipment, accommodations, and modifications and in having to depend on others in order to complete activities and daily tasks. Furthermore, these children may pity themselves for having to deal with the deterioration of abilities associated with a progressive condition and the possibility of a decreased life span. They may lack motivation or desire to excel in their daily activities and possibly blame their situation for the lack of a close peer group. Of course, these behaviors are only a possibility and are not exclusive to children with neuromuscular disorders. Many children with neuromuscular disorders may handle their disability extremely well, focusing on their abilities and strengths and using them to their advantage. Furthermore, poor behaviors may be due to factors extraneous to the neuromuscular disorder itself. Finally, the disorder should not be used as an excuse for poor behaviors; the child should be encouraged to accept their disorder and control any inappropriate behaviors that should arise.


Where can I find more information about school-related issues for students with neuromuscular disorders?

Please read "Muscle Facts" for more detailed information.