Tips for parents advocating for children with Duchenne

Advocacy doesn’t come naturally to everyone. Often, you learn to advocate through experience when your child needs someone to speak up for them.

If your child is living with Duchenne muscular dystrophy (DMD), these parent advocacy tips for Duchenne can help you speak up for your child at medical appointments and at school. They also offer ways to teach your child to advocate for themselves.

Advocating in clinical settings

A diagnosis like DMD comes with many medical appointments, making Duchenne healthcare advocacy important. Clinic days can be long, but your time with each provider may be short because you’re seeing several specialists. Six months or more may pass between visits, and your child’s condition can change during that time. You may also have many questions. Being prepared for visits is key.

Below are some ideas to help you prepare for your next visit.

Before the visit

You don’t have to wait for clinic day to raise concerns. You can use your online patient portal between visits to ask questions and request equipment or referrals. You can also complete forms ahead of time so providers can review them before your appointment. Write down your questions, and bring a one-page summary of current medications, recent changes, and upcoming procedures. Even if you know this information by heart, a meltdown or an unexpected test result can make it easy to forget.

During the visit

Start with your questions rather than saving them for the end. Take notes or, with permission, record the conversation. You can also bring someone to important appointments to help you remember what was discussed. Ask for a written care plan and make sure any needed referrals for equipment, follow-up care, or new providers are submitted. Also ask whether your child may be eligible for clinical trials and where you can find information about them.

Afterward

Get the clinic coordinator’s contact information. They can help with referrals, insurance reauthorizations, and communication between specialists. Don’t be discouraged if a provider declines to write a referral or a new prescription. Parents and providers have different perspectives. Continue the conversation, ask why the request was declined, and have the reason documented. Ask what would need to change for the request to be approved. You can also request a second opinion.

Navigating school accommodations

School accommodations may vary based on your child’s age and how their DMD progresses. Not every child with DMD needs the same things. You know your child best. Use that knowledge to ask for the accommodations that best fit them.

There are options. A 504 plan provides accommodations and support to help students with disabilities access their education. An Individualized Education Program (IEP) provides specialized instruction and related services for students who qualify. The right plan depends on your child’s needs and eligibility.

IEPs must be reviewed at least once a year, while review schedules for 504 plans may vary. Parents can request a meeting if their child’s needs change or the plan needs to be updated.

School accommodations for DMD can include:

• fatigue management, such as a modified schedule or rest breaks
• extra time between classes, plus a walking partner for younger children
• extra time on tests and writing support, such as a scribe, laptop, or reduced written work
• an accessible bathroom and toileting help, arranged with dignity
• modified physical education (your child may prefer to be excused from PE by high school)
• a written health plan for falls and medical emergencies, along with an emergency evacuation plan that the school practices ahead of time
• a school walkthrough at the start of each school year to check that classrooms and routes between activities are accessible to your child and their equipment. Also make sure field trips have accessible transportation and entrances, with extra adult support if needed.

You and your child’s school team share the same goal: helping your child succeed. You can lead the way in building a positive relationship. You can advocate strongly for your child while remaining kind and open-minded.

Consider sharing a one-page summary about your child with school staff who interact with them during the day, including those who don’t attend IEP or other accommodation meetings. Include:

• their picture, a little about them, and what they like to do
• any equipment your child brings to school
• activities that tire your child the most
• medication side effects to be aware of

Empowering your child

Children with DMD are often diagnosed at a young age, but as they grow up, they’ll need to learn how to speak up for themselves. Parents can’t always speak for their children, especially as they transition to college and adult care clinics.

Start teaching your child early how to advocate for themselves so they’re better prepared to make their own decisions as they become adults.

You can start small. During appointments, let your child answer questions when they can, even if it takes more time. Encourage them to choose one question to ask the doctor themselves. Starting in middle school, include your child in their IEP and other school accommodation meetings. Let them explain what helps and what doesn’t. Practice what your child can say when asking for help without apologizing or turning down help they don’t want. Let your child learn from small mistakes when it’s safe to do so. Missing paperwork can be a learning experience, but missing medication is a different matter.

Connecting with Duchenne parent networks

DMD is a rare disease, and caring for a child with the condition can sometimes feel isolating. Connecting with other families can be a valuable part of Duchenne muscular dystrophy parent advocacy. Here are some ways to connect with other families affected by DMD.

• Patient organizations are a good first stop. They can provide educational materials, school resources, care guidelines, and lists of clinics specializing in neuromuscular conditions. Many also offer online and in-person support groups.
• Online groups can be a valuable source of shared experiences, but they shouldn’t replace medical advice from your child’s care team. It may also help to connect with a family whose child is a few years older than yours. They may have practical tips about equipment and daily life.
• A patient registry, such as the Duchenne Registry, can help you learn about clinical trials your child may be eligible for.
• Parent conferences are a chance to meet other families and medical professionals and to learn about new therapies.

Essential next steps

Advocating for your child takes practice, and you don’t have to do everything at once. Advocating for a child with DMD is something you can learn and do well. Four steps you can take to get started include:

• finding your child’s genetic test report and saving a copy to your phone
• writing down your top three questions for the next clinic appointment
• asking the school for a meeting to review your child’s IEP or 504 plan if their needs have changed, even if a review isn’t scheduled
• joining one patient registry or parent organization

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Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.