A strong family-student-teacher team is the best approach to managing neuromuscular disease’s effect on education. The ever-changing symptoms of these diseases require ongoing communication between school and home, so problems can be quickly solved or prevented from arising.

Think big

Generally, even in cases of severe disability, it’s best to educate students for a life of independence and self-support. Most of these children will grow up to have careers, families and contributing roles in their communities.

Increasingly, young adults with neuromuscular diseases graduate from college and want jobs. With an almost 70 percent unemployment rate among people with disabilities, a good education is an essential success tool.

Common areas of difficulty

Although each student has different needs, here are a few areas that may require particular attention and awareness:

• keeping up with classwork
• keeping up with homework
• difficulty with written language and writing tasks
• fatigue
• difficulty paying attention and concentrating
• math and reading difficulties
• participating in classroom activities
• participating in physical education
• being pulled away from academic instruction for therapy
• physical positioning and special seating
• health concerns, such as respiratory infections
• social skills and peer relations
• physical accessibility of the school campus, including doorway widths, stairs, heavy doors, water fountains, distances between classes, curbs, aisles between desks and accessible bathrooms

Common accommodations

These areas should be addressed in consultation with family, medical experts and school staff during the IEP process or as they arise:

• special transportation
• physical or occupational therapy
• medical care and avoidance of infection
• curriculum modifications
• provision of aides and note takers
• tutoring
• untimed test
• adapted keyboards, software and calculators
• adaptive physical education
• rest time
• bathroom assistance
• field trip assistance
• extra time to pass between classes
• an extra set of textbooks to keep at home, to minimize carrying a heavy load
• classroom and school campus accessibility modifications
• help making/accessing friends and social relationships
• putting children in charge of their own care, especially as they reach middle school and high school — i.e., directing their aides, requesting accommodations, advocating for their needs, making choices and decisions — to help them develop emotional and social independence as their physical dependence increases
• allowing alternative ways to demonstrate understanding of a concept, such as making an oral rather than a written report
• assigning work buddies and using computer-assisted learning
• using special education strategies to compensate for learning, memory and language-processing difficulties
• implementing homebound (at-home) instruction for medically fragile children that features consistent support, communication, follow-through and high expectations
• inclusion of students with disabilities in social and extracurricular activities
• emphasizing the student’s strengths and abilities, not just focusing on disabilities