Remember your elementary and middle school years? How often did adults ask you what you wanted to be when you grew up or where you wanted to go to college? These early educational years are the perfect time to plant seeds of self-purpose and self-advocacy.
Thanks to advances in research and treatment, a new population of men and women has exponentially grown — adults living with pediatric diseases. While this is terrific news, the reality is that it’s expensive to live as an independent adult with a neuromuscular disease. And having a career that affords a comfortable lifestyle usually requires education or technical training beyond high school.
In talking with adults with neuromuscular diseases who grew up to go to college and graduate school and thrive in their careers, several key themes arise:
It’s often easier said than done. But MDA stands ready to be your advocacy partner, providing tools and support such as:
Teacher presentations. MDA representatives can speak at faculty meetings or trainings, explaining the disease and highlighting your child’s strengths.
Student presentations. Many families opt to be proactive about questions from classmates. MDA staff or clinic representatives can conduct classroom presentations or an assembly for an entire grade level. These presentations help build community by showing students how to be helpful and 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 first are being introduced. Presentation outlines and school accommodation recommendations (by diagnosis) are available through 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 the student safely maneuver from the drop-off area to the building entrance? Can the student independently enter the building and access all levels of the building? How far apart are the student’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 the student? Is the student aware of that plan?
Are field trips equally accessible to students with disabilities? Have physical education classes been adapted to the student’s abilities? Has every attempt been made to include the student in the general P.E. classroom?
MDA educational advocacy
Many resources are available through MDA’s educational advocacy initiative.
For more information about working with your child’s school and helping your child become an effective self-advocate, contact your local MDA office or the social worker at your MDA clinic.
Annie Kennedy is MDA Vice President — Advocacy.