How my parents prepared me to self-advocate in Duchenne care
Before my appointments at the National University Hospital in Singapore today, I still reflect on the years when my parents answered almost every question the doctor asked.
It made sense. I was growing up with Duchenne muscular dystrophy (DMD), a genetic condition causing progressive muscle weakness that affects my breathing and heart. My parents knew my medical history better than I did, and before I was old enough to process it. They were protecting me from what I couldn’t have understood back then.
As I grew up in my teen years, my doctors continued directing their questions to my parents, although I was now able to answer them myself from my wheelchair. They responded because that was the default. No one was doing anything wrong, but I still felt like the conversation was happening around me instead of with me.
Looking back, I believe that one of the greatest gifts that a parent can give their child is the confidence to practice self-advocacy with their Duchenne care team. Stepping back can be scary after years spent shielding your child from the reality of DMD, but it isn’t about giving up your role. It’s about helping them carry it forward.
Giving kids a voice in the clinic exam room
Many clinic visits still follow the same script. The doctor greets you and asks you how your child has been doing. Answering every question for them can discourage them from learning how to describe their patient experiences on their terms. It may feel awkward at first, but it gets easier.
Here are two ideas that can help:
- Try the five-minute rule: During the first five minutes of each consultation, let your child answer every general question from the attending healthcare worker about pain, fatigue, breathing, or mobility before anyone else speaks. You can fill them in on the missing details afterward, but that pause allows them the space to advocate for themselves.
- Consider where everyone is: When assisting your child into the room, ensure your child is facing the clinician so they can have good eye contact by positioning their wheelchair directly opposite the doctor. If the doctor is standing up, gently tell them that it might be better for them to sit so that your child can feel at ease. Sit just behind or beside them instead of between. That encourages the doctor to address your child first.
Shifting from parent-led to patient-led care
When I was younger, my parents would make every decision on my behalf. As an adult, I wanted to be part of those conversations. Being left out frustrated me since I’m the one who’s living with DMD every day.
You can ease this transition for your child by seeing healthcare as a shared project, not just a conversation between the adults only, especially when your child is able to speak for themselves. Before every hospital trip, it’s advisable to talk to your child about their care options.
Explain why a treatment is being recommended, discuss the benefits and risks, and ask your child what they think about it first. Assure them that they don’t need to make decisions yet if they don’t feel ready, but they should start learning the process involved in decision-making as soon as they can.
You should also let your child know that it’s OK to ask you questions, request changes, or say when something isn’t working. That’s part of taking ownership of their own care.
Learning to track medications and schedules
Today, I manage my appointments using my hospital’s app. Due to my inattentive attention-deficit/hyperactivity disorder (ADHD), my mom still helps me take stock of my medication.
But not every child with DMD has ADHD or executive function issues. Some are capable of tracking their appointments and medicine independently. Nevertheless, you can slowly build confidence in your child by adopting these steps:
- Start with one daily medication reminder that your child manages on their own.
- Next, let them track an upcoming appointment and prepare questions for the doctor themselves.
- Later, involve them in ordering repeat prescriptions or communicating with the pharmacy, and then assist them in coordinating appointments with specialists in cardiology, pulmonology, and physiotherapy.
You can also consider creating a shared calendar (for appointments only, not personal activities) and medication list with your child so that you can stay involved in their care while respecting their privacy. The goal is to prepare them for adulthood while keeping your support available to them.
Teaching them their rights in the doctor’s office
Self-advocacy in Duchenne care means knowing that your voice matters. As your child transitions to adult Duchenne care, the conversation shifts from doctor and parent to doctor and patient. Growing up in Singapore, my parents taught me from a young age to respect doctors. Respect is valuable, but it shouldn’t mean staying silent.
Your child has every right to ask why a treatment is being recommended, request more time to decide, or seek a second opinion if something doesn’t sit well with them. Remember, your child’s voice is just as valid as the doctor’s, and it’s important for you to tell them so.
As your child is transitioning to adult Duchenne care, remind them the doctor works with them, not just for them. Practice these conversations at home. Ask your child to note how their body and mind are feeling and bring it to the next appointment.
How parents can offer support without taking over
Parents never stop being advocates. Their role evolves over time. Today, my parents still support me, but they now invite me into the conversation with my hospital team and no longer answer every question for me. That’s made me confident in managing my health.
When challenges inevitably arise, ask your child, “What do you think?” before offering your thoughts. Even an incomplete answer helps. If a doctor directs every question to you instead of your child, try saying: “Perhaps we can let [Your Child’s Name] answer your questions today if that’s OK with you.” That shows your child you believe in them, and reminds others whose voice comes first.
While my parents are still my main source of care, they also gave me the chance to speak up for myself. Your child won’t own their care overnight. They will make mistakes and need you to guide them along the way. When you allow them the space to do that, you’re not stepping away. You’re helping them take care of themselves. That’s one of the best things that you can do for your child today.
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.
