The educational years are a critical part of growing into a successful, happy adult. While faced with challenges that their classmates may not experience, most children with neuromuscular diseases — with proper preparation and relatively simple accommodations — grow up to have careers, families and contributing roles in their communities. That’s why MDA offers support and information to assist parents of children with neuromuscular disease in preparing and advocating for the best education possible. In talking to adults with neuromuscular diseases who grew up and went on to college, graduate school and thriving careers, several key themes arise:

• They were frequently asked what they wanted to be when they grew up.
• Their parents expected them to pursue the same postsecondary education as their non-affected siblings.
• Their teachers held them to high academic standards.
• From an early age, they were included in their annual academic planning meetings (IEP and 504 plan).
• Self-advocacy skills were incorporated into academic plans.
• They joined clubs and extracurricular groups, and built support networks.

Ensuring your child’s school experience is as rigorous and supportive as possible is sometimes easier said than done, but MDA stands ready to be your advocacy partner, providing tools and support, such as:

• Teacher presentations: Your local MDA staff can speak at faculty meetings or trainings, explaining the disease and highlighting your child’s strengths.
• Student presentations: Many families choose to be proactive about questions from classmates. Your local MDA staff can conduct classroom presentations or an assembly for an entire grade level. These presentations help build community by showing students how to be helpful while underscoring all of the wonderful traits your child and his/her peers share in common. This can be especially helpful when new mobility equipment and school accommodations are introduced. Presentation outlines and recommendations for disease-specific school accommodations also are available from your local MDA office.
• Maintaining communication: Frequent meetings and open communication among teachers, school personnel, students and their families help ensure the school is providing an accessible, rigorous and nurturing academic environment. This is especially important when medication, therapies and medical interventions impact classroom performance or attendance.
• Assessing the need for accommodations: MDA can help you think through a variety of important considerations. Can your child safely maneuver from the drop-off area to the building entrance? Can he or she independently enter the building and access all levels of the school? How far apart are your child’s classes?  Can a second set of textbooks be kept at home? Is preferential seating needed in the classroom? What is the emergency evacuation plan for your child? Is he or she aware of that plan? How will the school help make field trips equally accessible for your child? Have physical education classes been adapted to your child’s abilities, and has every attempt been made to include him or her in the general P.E. classroom?

MDA educational advocacy assistance

Many resources are available through MDA to assist you in advocating for your child’s education.

• MDA Publications: Publications for teachers and parents are available in print and online, including: "A Teacher’s Guide to Neuromuscular Diseases" and "Learning to Live with Neuromuscular Disease: A Message for Parents."
• Quest Magazine Online: The online magazine offers an Education category that contains a variety of helpful articles, or use the keyword search box feature.
• MDA Webinars: MDA hosts webinars on a variety of topics, including Educational Advocacy for Educational Professionals, Educational Advocacy for MDA Families and The Road to College.
• School Advocacy Resources: Additional resources developed by expert members of the MDA community to help you ensure that your child's school experience is as rigorous and supportive as possible.
• Hop-a-Thon: MDA’s Hop-a-Thon is a free, educational program that teaches children, ages 2 to 7, in day care centers, preschools and elementary schools about physical disabilities. The program offers a weeklong disability awareness lesson plan; hands-on activities for the children with books and a video; and other free educational materials.
• MDA Transition Center: Transition services are supports and resources that assist youth with disabilities as they prepare for adulthood and develop life skills necessary for becoming successful, contributing members of society.