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 challenges so you can support your child every step of the way.

Fortunately, there are many strategies you can use to help your child thrive in school and cope with 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 Living With Duchenne Muscular Dystrophy Face?

Children with DMD have difficulties that can affect their learning and school experience. For example, they may face the following challenges:

• Cognitive (thinking and memory)
• Physical
• Emotional

Cognitive Challenges

While 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 problems in learning. Depending on how severe it is, some people with DMD may also have intellectual disabilities. However, this only happens in some cases.

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

Some children with DMD may have trouble remembering and processing complicated instructions when they’re given verbally. Others may struggle 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, like 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 struggles. Getting through a school day may take more energy than they have.

Emotional Challenges

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

Some children who live with DMD may find it harder to deal with frustration, do what is asked of them, and 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 Associated With DMD

Fortunately, there are many things you can do, as a caregiver, 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 need specific services but who 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 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. Provide Assistive Technology

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

3. Secure Extra Time for Assignments

Your child may need extra time to complete assignments throughout the school year. This extra time can help them if they have to miss school for therapies or doctor’s appointments. Extra time can also be helpful if it takes your child longer to complete their school work or take exams. It allows them to complete their work and feel good about what they’re turning in, even if it’s not submitted by the deadline.

4. Request Preferential Seating

You can include a request in your child’s IEP or 504 plan for them 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 seats with extra space to accommodate a walker or a wheelchair. Some may benefit from sitting 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, other children may need to sit in a quiet part of the classroom.

5. Help Conserve Your Child’s Energy

Request that the school work toward anything that might save your child’s energy or make their life simpler. This may involve setting up ramps, installing low-pile carpets, elevating their chair, and more. You can tailor these requests to what your child needs or desires. It might be helpful to try some of these things 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 is 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 call you and come home whenever they feel tired, so they avoid exhaustion.

7. Change Up Physical Education

Many of the activities that schools traditionally include 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 keep their muscles functioning well for as long as possible. Set it up so your child can participate in PE in other ways, like by leading stretches, acting as an assistant coach, or being the scorekeeper.

8. Test for and Accommodate Other Learning Disabilities

If your child also lives with ADHD or any of the learning disabilities mentioned above, they will benefit from specific accommodations, adaptations, or interventions. Seek out testing as soon as you realize your child is struggling. You may be able to get testing through your school, via a program called Child Find. 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 is struggling 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 additional help outside of class time, or attend tutoring sessions offered at your local library or by the local National Honor Society.

10. Talk to Your Child’s Medical Team

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

Find Your Team

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

Have you or a loved one found strategies to overcome learning disabilities? Share your experiences in the comments below.