Children with Duchenne muscular dystrophy (DMD) face challenges that others don’t. As your child grows and starts school, they may face new difficulties there, too. It’s important to be aware of these issues so you can support your child every step of the way while living with this form of muscular dystrophy (MD).

Fortunately, many strategies can help your child thrive in school and cope with muscular dystrophy learning disabilities. Over time, you’ll be able to add their teachers and other support staff to the village that helps them live well. Developing a supportive network that includes family members, school staff, and the medical team will help make school a positive experience for your child and maintain a good quality of life.

What Learning Challenges Do Children With Duchenne Muscular Dystrophy Face?

Children with DMD have difficulties that can affect their learning and school experience. For example, they may face cognitive (thinking and memory), physical, and emotional challenges.

Cognitive Challenges

Although DMD mainly affects muscles, studies have found that it can also cause problems with cognition, possibly due to the same factors that cause muscle issues. Additionally, DMD is linked to other conditions that can affect cognitive abilities. Some children living with DMD may have a low IQ, which can lead to learning problems. Depending on how severe their condition is, people with DMD also may have intellectual disabilities. However, this happens only in some cases.

Children diagnosed with DMD may also be more likely to develop attention deficit hyperactivity disorder (ADHD). This can make it hard to focus, pay attention, turn in work on time, and more. ADHD can also mean a child has difficulty with planning, managing time, and solving problems.

Some children with DMD may have trouble remembering and processing complicated instructions when given verbally. Others may find it hard to express themselves effectively. Both of these challenges can make school harder.

Finally, DMD is associated with several learning disabilities, such as:

• Dyscalculia — Difficulty with math
• Dysgraphia — Difficulty with writing
• Dyslexia — Difficulty with reading

If you believe your child may have one of these learning disabilities, testing can help identify their specific challenges.

Physical Challenges

Physical issues related to DMD, such as muscle weakness, can affect your child at school. This will look different for each child because everyone has differences in symptoms and their severity.

Many children living with DMD find school exhausting, even if they don’t have intellectual challenges. Getting through a school day may take more energy than they have.

Emotional Challenges

People living with DMD are more likely than others to experience depression and anxiety. Depression can make it hard to concentrate and care about tasks, which can interfere with school. Anxiety can make a person feel sick or so jittery that they can’t focus.

Some children who live with DMD may find it harder to deal with frustration, do what is asked of them, or not respond with temper tantrums. Medications like steroids can make these problems even worse. No matter their cause, these issues can interfere with learning.

Tips for Overcoming Learning Challenges Linked With Duchenne Muscular Dystrophy

Fortunately, as a caregiver, you can take many steps to help your child overcome any learning challenges that DMD causes.

1. Get an Individualized Plan

Your child may need an individualized education plan (IEP) or a 504 plan. An IEP is for students who need to receive certain kinds of help at school, like occupational therapy, time with special education providers, or speech therapy. A 504 is for students who may not require specific services but do need extra support at school.

You can request to have your child evaluated for an IEP or 504 at any time. The school will gather data and then meet with you and your child to come up with an education program specific to their needs. These plans may allow your child to:

• Participate in physical therapy instead of a physical education (PE) class
• Have extra time for tests or assignments
• Use assistive technology

These are legal documents that must be followed once they’re in place.

2. Use Assistive Technology

Technological devices may help with your child’s learning. This can be as simple as allowing them to use a keyboard instead of writing assignments by hand. There are many assistive technology options, and you can ensure that your child has access to what they need by including these aids in their IEP or 504.

3. Give Extra Time for Assignments

Your child may need additional time to complete assignments throughout the school year. Flexibility with deadlines can be helpful if they have to miss school for therapy sessions or doctors’ appointments or if they need longer to complete schoolwork or take exams. Extra time allows them to finish and feel good about their work, even if it’s submitted later.

4. Request Preferential Seating

You can include a request in an IEP or 504 plan for your child to sit in a spot that helps them focus better. You can also explain what that looks like for your child. Some children may need extra space to accommodate a walker or wheelchair. Some may benefit from being close to the door so they don’t have to expend as much effort coming and going. Others may need to sit close to the teacher so they don’t get distracted. Still others may do best in a quiet part of the classroom.

5. Help Conserve Your Child’s Energy

Request that the school take steps toward saving your child’s energy or simplifying their life. This may involve setting up ramps, installing low-pile carpets, elevating their chair, and more. You can tailor requests to what your child needs or wants. It might be helpful to try some of these strategies at home so you know what’s most effective at saving your child’s energy.

6. Focus on Key Priorities

If your child is particularly tired or expending too much energy at school, work with the school to determine what is a priority. You may ask that your child not be required to do homework, handwrite assignments, or take written tests. You might also want to arrange for your child to go home if they feel tired, so they avoid exhaustion.

7. Change Up Physical Education

Many activities traditionally included in physical education can be harmful to a child living with DMD. However, children with DMD need to move safely to preserve muscle strength and function for as long as possible. Work with the school to set up a plan that lets your child participate in PE in other ways, perhaps by leading stretches, acting as an assistant coach, or being a scorekeeper.

8. Test for and Accommodate Other Learning Disabilities

If your child also lives with ADHD or other learning disabilities, they’ll benefit from specific accommodations, adaptations, or interventions. Seek out testing as soon as you realize your child is having trouble. You may be able to get testing through your school via a federal program called Child Find, which helps schools identify and evaluate children who may need special education services. You can also talk to your child’s pediatrician about private testing, which may be covered by some health insurance plans.

9. Consider Tutoring

If your child is missing a lot of school or having difficulty in certain areas, tutoring can be a great way to get them the academic help they need. You can find a tutor outside the school, ask a teacher for help beyond class time, or attend tutoring sessions offered by your local library or National Honor Society.

10. Talk to Your Child’s Medical Team

Contact your child’s doctor if you have questions or need help with the school experience. Their doctor can provide documents about your child’s needs and connect you with therapists who can improve their time at school. Whatever concerns you have about school and DMD, your doctor can help you find the right resources.

Find Your Team

On myMDteam, the site for people with muscular dystrophy and their loved ones, members come together to gain a new understanding of MD and share their stories with others who understand life with MD.

Have you or a loved one been diagnosed with DMD or another form of MD? Have you found strategies to overcome muscular dystrophy learning disabilities? Share your experiences in the comments below or on your Activities page.