Children usually are best able to cope with their disease and treatment if they know as much as possible about it. Medical personnel usually tell parents and the child about the diagnosis, methods of treatment and progression, and some families go on to do their own research.

However, it isn’t prudent to assume the child has been told everything about his or her disease. Some parents don’t address such topics as life expectancy and increasing disability until the child asks about them. Talk to parents about the approach they’re taking to informing the child, so you can support it at school.

When a teacher shows sincere interest and feels comfortable speaking with the child about his or her abilities and challenges, the child likely will feel comfortable asking questions and expressing feelings.

Accurate information also enables peers to cope with a classmate’s disease. (However, sometimes a child is reluctant to have the disease discussed, and some parents may be hesitant for others to know about it. Discuss this preference with the family before giving information to classmates.)

It can help a class to know about the type of neuromuscular disease that affects their classmate; the nature of treatments such as physical therapy and prednisone; and the ways the disease may affect a child’s appearance, abilities and behavior. With accurate knowledge, peers are less likely to tease and more likely to defend their classmate when teasing does occur.

When a student with a neuromuscular disease misses a lot of school due to surgery or illness, maintain his or her social connection with the class by having students send notes, get-well cards and other friendly tokens.

Disability education activities

Be sure to discuss this topic with the child’s family first, and invite them to take part if they wish.

Some classroom activities can enhance your students’ knowledge of disabilities and their acceptance of people who are “different.”

• a presentation by the student (and family members) about the disease and how he/she handles it
• lectures and presentations of various types of adaptive equipment (your local MDA office may be able to help you with this)
• experiential presentations (for example, a wheelchair obstacle course to show the importance of an accessible environment)
• group discussions of stereotypes and attitudes toward people with disabilities
• a lesson on “person first” language when speaking about disabilities (i.e., saying “a boy with a disability” instead of “a disabled boy” puts the person first, not the disability)
• awareness-raising projects, such as walk-a-thons or carnivals, that also can be school fundraisers for MDA