Muscular dystrophy (MD) can affect your child’s learning, social life, and physical safety during their school journey. Although your child may face additional challenges while navigating the education system with MD, school accommodations can help them succeed in the classroom.
MD is a group of conditions characterized by the progressive weakening and wasting of muscles. Symptoms of some forms of MD begin in early childhood, and around 2 to 3 in 10 people with Duchenne muscular dystrophy (DMD), the most common type, may have a learning disability.
Schools and educators should be aware of the special needs of children with MD. Establishing school support systems early on can help your child access a full, rewarding education. This article explains how to prepare for the school year, work with teachers, care teams, and school psychologists on an Individualized Education Program (IEP) when appropriate, and how classroom accommodations can help.
How can MD affect school?
MD’s progressive muscle weakness can affect mobility, stamina, and dexterity and, in some boys with DMD, may be accompanied by difficulty processing verbal instructions and other information.
School-related challenges can include:
- Moving from class to class, especially down long corridors or up stairs, can become increasingly challenging throughout the day due to fatigue, particularly when carrying books.
- Reduced fine-motor skills can make taking notes in class more difficult.
- Time spent away from class for medical appointments, treatments, or physical therapy can create learning gaps that make it challenging to keep pace with peers.
- Some people with DMD can have learning disabilities and co-occurring neurodevelopmental conditions such as autism or ADHD. Cognitive or developmental difficulties can also occur with other forms of MD, including Becker muscular dystrophy, myotonic dystrophy, and certain types of limb-girdle muscular dystrophy. These challenges can complicate navigating the curriculum and social life at school.
- Peers may not understand the disease and its implications, which can affect a child’s social inclusion at school.
The symptoms of MD can change over time. With the right planning, communication, and flexible school accommodations that adapt to changing needs, a school can support these shifting physical and cognitive demands.
How should families prepare for the school year?
Connecting educators and school nurses with resources for understanding MD can help prepare a child with MD for school. This may help teachers adapt classes to a student’s needs and help nurses respond more effectively to medical needs and medications.
Make sure the school nurse has the contact information for your child’s neuromuscular care team, as well as information about any medications they take or clinical trials they are participating in. Be sure to provide any required prescription or medication authorization so the nurse can administer medications at school if necessary.
You may also be able to sign a release of information (ROI) form that allows the care team to share information with the school nurse. This may help with coordinating care between the school and medical team.
Helping classmates understand MD may support inclusion and reduce misunderstandings. Consider bringing your child to the school before the first day to give them time to become familiar with the layout, and discuss events such as field trips with teachers in advance. It may also be helpful to ask about accessible transportation and other resources the school can provide.
What school accommodations may help?
School accommodations are changes to the environment, tasks, or usual processes that give students with MD an equal opportunity to participate at school. MD affects every child differently and can change over time, so accommodations may need to be flexible to meet changing needs.
For example:
- A child may need to take oral tests if they struggle with writing, or assignments may need to be shortened if they require a lot of writing. Pencil grips and lightweight stationery can also help.
- Students with MD may be permitted to give an oral report instead of a written one or type a response instead of writing it by hand. Teachers can also help by providing a copy of the class notes.
- Tape recorders and extra time can support note-taking. Extra time may also be needed for getting between classes or to the cafeteria, and assigning a partner or “buddy” may provide support and help reduce isolation.
- Using assistive technologies at school, such as text-to-speech or speech-to-text tools, can support access to schoolwork and learning.
- A child with MD may need to leave class early to avoid crowded corridors.
- Classrooms may also need to be laid out in an accessible format, with enough aisle space for wheelchairs or scooters. Seating should allow the student to move around the classroom easily without obstacles in their path.
- Children with MD may need rest breaks when fatigue is high or the school day becomes too taxing.
Students with MD may have planned or unplanned absences due to medical appointments or emergencies.
Schools may need to provide accommodations to help ensure that students with MD are not at a disadvantage. These can include offering physical therapy and occupational therapy consultations as needed, reducing the need to carry heavy textbooks by providing two copies, one for school and one for home, and providing elevator access in multistory buildings.
It is also important that the school’s emergency evacuation plan take into account the physical needs of students with MD and that designated staff be assigned to assist them during emergencies.
School events and field trips should be carefully planned, including whether the destination and transportation are accessible for students who use wheelchairs.
Considerations for teachers
It is important that teachers understand that MD is not contagious and cannot be spread to others. Some students might require additional medical equipment, such as ventilators, mobility aids, or IV stands for administering fluids and nutrition. Teachers should not be alarmed by this equipment.
Teachers should keep in mind that some children with MD may have learning or developmental difficulties that can affect academic performance.
Teachers should encourage active participation in regular class activities while keeping an eye on the child’s comfort. A dedicated student aide from the district may help with tasks such as taking notes or carrying books.
Support from teachers and school staff can help students with MD participate and work toward their academic goals. Teachers should also be mindful of each child’s abilities and needs when setting expectations in class.
A basic understanding of the type of MD the child has and its symptoms can help teachers recognize changes or concerns and know when to seek additional help.
What support plans may be needed?
Students with MD may be eligible for individualized education programs (IEPs) or 504 plans, depending on how their condition affects them at school. While IEPs customize learning programs according to a student’s individual needs, a 504 plan provides accommodations at school to meet the child’s needs and helps ensure that children with disabilities are treated fairly at school. Both programs are based on the child’s individual needs and may involve evaluations by school professionals to help ensure those educational needs are met.
Parents and educators should work together to develop an educational plan for children with MD. It is important to consider the tasks a child performs at school, including studying, attending classes, and playing.
A record of the activities the child participates in can be maintained in a log, allowing families and educators to periodically review which activities are easier and which are more challenging. Over time, noting progress may also be encouraging for the child and family.
In your child’s IEP or 504 plan, you should also include a safe room or an emergency evacuation plan that accounts for their needs during a mass evacuation.
How can students participate safely in school activities?
Reduced stamina and physical strength can make school activities more challenging. However, supporting students with MD can help them take part in school activities and get around the school safely. Getting between classes may also be more difficult for some children with MD.
To address their mobility and transfer needs, educators and school staff may consider the following:
- discourage floor-sitting activities
- provide a sturdy, supportive chair with arms to help the student stand up
- keep walking distances to a minimum
- provide elevators or ramps instead of stairs
- make sure classroom aisles are wide enough for a wheelchair or scooter
- consider using a rolling backpack or cart to avoid lifting heavy items
Participating in physical education (PE) with MD can present additional challenges, especially when muscle weakness and fatigue already make getting around school difficult. PE teachers should consult with the student’s parents to adjust activities.
They can also involve students in nontraditional roles such as keeping time, keeping score, or giving presentations.
How can schools support social and emotional well-being?
Living with MD can be socially isolating and, in some forms, may be associated with an increased risk of anxiety, depression, or emotional distress. School can foster a welcoming, inclusive, and empathetic environment to support students with MD.
The following strategies may help:
- Promoting inclusion: Using mixed-ability pairs and interactive, hands-on learning can support inclusion without overexerting the student. Activities that unintentionally isolate a student can contribute to feelings of exclusion. For example, if getting up from the floor is difficult, restructure a floor-seated activity so students can participate while seated in chairs.
- Preventing bullying: Teachers should lead open, age-appropriate conversations with peers about disability, individual needs, and tolerance. This may reduce teasing and make peers more likely to stand up for their classmate.
- Workshopping inclusion: Educators can involve classmates directly in developing ways to include their peer with MD in all activities, such as recess, PE, and field trips. Discreet “buddy systems” can help peers provide support by carrying heavy books or opening doors.
- Nurturing self-advocacy: Involving the student in their own planning and daily routine through activity logs or incentive systems can help them understand their limits and express their needs. This can include speaking up when they need a break or additional support.
How can families prepare for school transitions?
Make sure a child has advance warning of transitions and changes, such as moving from one grade to the next or from middle to high school.
Because MD symptoms can change over time, maintaining an open dialogue with school staff or new schools about changing needs can help students and schools prepare for changes to routines, IEPs or 504 plans, and curricula.
Regular assessments and communication with the child’s care team and school staff can help identify what support your child may need before moving into the next stage of school.
Families can help serve as a bridge between the child’s care team and the school to help ensure that changes to formal requests for accommodations and education plans are communicated and implemented.
By working with schools to educate staff about the needs of a child with MD and encouraging the child’s self-advocacy, families can help prepare them for transitions throughout their education.
A back-to-school checklist
Make sure the following have been planned and discussed before a child returns to school:
- Mobility and transfer needs: Discuss accessible classroom seating and ramp or elevator access, and accommodations for mobility aids, ventilators, or IV stands.
- Fatigue patterns: Keep expectations realistic and mindful of fatigue, track energy levels using an activity log, reduce the amount of textbook carrying when possible, such as by providing separate books for home or using tablets, and consider student aides to help with writing and carrying items.
- Respiratory or cardiac considerations: Make sure staff are aware of any medical equipment the student may use, such as a ventilator, and coordinate with the child’s care team about relevant medical needs.
- Medications: Inform appropriate school staff about daily or regular medical treatments, including any medications, IV nutrition, or fluids that may need to be administered during school.
- Personal care: Consider district student aides and physical or occupational therapy consultations to help with physical tasks and support the student’s comfort and participation at school.
- Emergency contacts: Establish early, direct communication among parents, teachers, and the child’s care team.
- Evacuation plan: Assign dedicated personnel to assist the student during emergency evacuations.
- Transportation: Confirm wheelchair access for school transportation and field trips, and discuss potential field trips ahead of time.
- Physical education: Discuss the student’s energy levels and physical abilities in advance and reassess them regularly as needs change.
- Absences: Plan ahead for missed class time or tests and discuss whether accommodations through an IEP or 504 plan may be appropriate.
- Preferred level of independence: Balance student aide support for physically demanding tasks with the student’s active participation in class activities.
Other resources for families
The Muscular Dystrophy Association (MDA) offers educational resources for families and schools, including information that can help schools understand a child’s condition and identify accommodations that may support their safety and education.
The MDA also offers programs such as the Hop-A-Thon for preschool through second-grade children, as well as young adult resources and programs that support students as they move through high school, higher education, employment, and independent living.
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