How to Advocate for Your Child When Doctors Don’t Listen
- bravelifenpc
- Nov 21
- 9 min read
Updated: 6 hours ago
Because our children deserve more than “it’s nothing.”
If you’re a parent of a child with Down syndrome or medical complexities, you’ve probably had at least one appointment where you walked out thinking, “They didn’t hear me.”
Sometimes it’s subtle. A rushed appointment. A dismissive tone. A symptom brushed off as “normal for Down syndrome.” And sometimes it’s blatant.
“He’ll grow out of it.”
“That’s not possible.”
“You’re just anxious.”
But here’s the truth. You know your child better than anyone. And you are absolutely allowed to and even obligated to advocate for them.
In Brave’s first four years of life, we went through a lot of medical challenges. We counted, and turns out he was in hospital every month for about three years! With so many challenges heaping up, we experienced PTSD, gaslighting doctors, harsh nurses, and plenty of misunderstandings or wasted tests.
Even with all the effort we put in, it has taken years to uncover the true root causes of some of Brave’s biggest medical hurdles. Throughout what we call Brave’s “hospital days”, we learned that a parent’s advocacy can often be a matter of life and death, especially regarding the differences in biology and chemistry that can come with Down syndrome.
We want you to feel confident in your voice as your child’s parent and equipped to work with and not against medical staff. So let’s dig into some practical, grounded, mom-tested strategies for being heard in the medical system when your child has a diagnosis that many clinicians may misunderstand.
1. Go in Prepared (with facts, not feelings)
Doctors listen differently when you come with organised information. We learned to carry a big, black zip-up binder with notes and previous test results.
You can pop these things into your folder:
• A written symptom list
• Dates and timelines
• A list of medications, supplements, and therapies
• Past diagnoses and relevant history
You can also take along videos on your phone of breathing abnormalities, seizures, colour changes, feeding issues, choking, regressions, and any other relevant instances you want the doctor to see.
When your concern is backed by data, it becomes harder to dismiss.
Pro tip: Start each appointment with, “Here are the top 2 things I need help with today.”
It keeps the appointment focused and shows you’re organised, not “emotional.” Even though we are in modern times, doctors still have the habit of scribbling a note into files about moms that are “anxious” or “overly stressed”. One note like this can follow you around for years.
We know how hard it is sometimes not to feel overwhelmed or break down in tears. What helped me was realising that my fortitude in the moment was going to lead to better care for my child. There will be time for tears once the conversation is over.
It doesn’t mean you shouldn’t have feelings, but you can think of your engagement with doctors and nurses as professional discussions where emotion takes a back seat.
2. Use Clinical Language
You don’t need to be a doctor, you just need to speak in terms doctors understand, even as a parent.
Instead of, “He’s struggling with breathing,” you can say, “He has increased work of breathing, especially on exertion.”
Instead of, “She looks pale,” you can say, “She’s showing colour changes, especially around the mouth and cheeks during activity.”
Doctors take you more seriously when your descriptions are specific. That also means learning the names of your child’s symptoms and diagnoses. We made a list of the common comorbidities associated with Down Syndrome, which you can read in our Free Down syndrome Resource Pack.
This isn’t about pretending to be a doctor. It simply helps the doctor recognise the seriousness of what you’re describing when you use words they have been trained to pay attention to.
3. Bring Printed Guidelines
This one is huge, especially in Down syndrome care. It’s important that you realise that although doctors had Down syndrome in their textbooks as students, many may have limited experience and may not recall all the details.
As a parent, you probably know more than you think you do. Printed guidelines from recognised authorities like the CDC or American Academy of Pediatrics, for example, can help validate your requests and statements with evidence doctors can respect.
You can also find links to further studies in our free Digital Resource Pack.
If a doctor says, “That’s unnecessary,” and you can show guidelines recommending otherwise, the conversation can often shift immediately.
4. Trust Your Gut
And don’t be afraid to say “I’m not comfortable with that.” You are absolutely allowed to say things like:
“I’m not comfortable waiting.”
“This doesn’t match my child’s baseline.”
“I’d like a second opinion.”
“I’d like this added to his medical notes.”
A firm sentence shuts down dismissal faster than arguing. I always think of the fact that, at the end of the day, I am paying my medical team for the care of my child (or the medical aid at least), and I am allowed to have an expectation of a level of care.
5. Ask the Magic Question
“What is your plan if it gets worse?”
If a doctor tries to brush off your concern, this question forces them to think clinically instead of dismissively. It also gets them to outline red flags, which protects your child and strengthens your advocacy.
6. Get Everything in Writing
If a doctor refuses a test, referral, or treatment, ask, “Can you please document in the notes that I requested ______ and that it was declined?”
You would be amazed how quickly attitudes change. Very few clinicians want that decision formally recorded.
7. Bring a Second Adult to the Appointment
Not for emotional support but for accountability. Doctors are more careful, more thorough, and more respectful when someone else is in the room. Even better if the second adult takes notes.
8. Know When to Change Doctors
You are not obligated to stay with someone who underestimates your child’s health needs. Kids with Down syndrome often look stable long before they are stable. Or, conversely, they may look fine but actually be on a speedy decline as their CRP levels quietly skyrocket.
If you repeatedly feel unheard, minimised, or rushed, it’s time to move on. You’re not being dramatic. You’re protecting your child. And unfortunately the truth of the matter is that not all doctors are equal; some may not match with your needs, or they may make you uncomfortable. You are allowed to have preferences, and you are allowed to seek out a second opinion.
9. You’re Not “Difficult” You’re Informed
Parents of complex kids get labelled quickly as “anxious,” “overprotective,” “internet-research mom.”
No.
You are a parent who pays attention.
You are a parent who notices subtle changes.
You are a parent who understands your child’s baseline better than any professional.
And sometimes, you are the only one standing between your child and a missed diagnosis.
That isn’t “difficult.” That’s brave.
With our son, Brave, I learned the hard way that our mom instinct for our sweet children is strong and usually accurate. Where I often “over-worried” with my firstborn typical daughter, my concerns when it came to Brave were warranted time and time again, and sometimes it was worse than I had worried it may be.
When I worried about a cough my daughter had, it always went away after a few days or healed with time. But with Brave, he would look a bit pale in the morning. The thermometer would read 37.1 in the morning, and my mommy alarms would go off.
By eleven that night, we were usually rushing to hospital with a pale, lethargic, inconsolable little one. When we arrived at the emergency rooms, doctors sometimes mistook my concern for mommy anxiety, until my son’s infection markers came back as astronomically high (CRP of 150 for example). After which I often got apologies.
Your mommy instincts can save your child, so definitely take them seriously.
10. Advocacy is a Skill
Your advocacy skills will get stronger every time you use them. And as your journey continues, you will often build a rapport with your doctors and nurses.
The goal of advocacy isn’t to fight every doctor. The goal is to work with the right ones and stand firm with the ones who refuse to see the full picture.
You are not alone. You are not imagining things.
You are not overreacting. You are advocating, and that’s one of the greatest gifts you can give your child.
11. Manners & Kindness Strengthen Your Advocacy
Advocacy doesn’t mean being aggressive or up in arms with each medical staff member. And in my experience, the way you speak to healthcare workers makes a huge difference, especially South Africa.
Our nurses and doctors are often overloaded, understaffed and exhausted. A rushed or frustrated tone (even if it’s fair) can make them shut down emotionally. But a warm greeting and respectful tone almost always softens the room.
This isn’t about being a pushover. it’s strategic. Your kindness doesn’t replace firmness. It gives your firmness a better chance of being heard.
What woke me up to this reality was a particular emergency visit to our pulmonologist in 2020. At the time, Brave was sick AGAIN for the 20th time. His doctor messaged me to bring him to her rooms first thing in the morning so she could take his case straight through to the hospital without dealing with the ER rooms and the escalated COVID infections coming through there at the time.
When we arrived, five adults were sitting in the room in intense prayer alongside our doctor. All wore scrubs and coats of some kind. I saw tears and heard an urgency in their voices. There was a palpable heaviness and urgency in the room.
The receptionist led me to a separate room. She gingerly whispered, “They’ve been here all night with another resus.”
It dawned on me. All night long these doctors and nurses had been working to resuscitate a baby in the PICU. Hours and hours fighting for a life through the night. No break. And now, exhausted and emotionally raw, they were praying for that little one to survive. It made me aware of the heavy burden our doctors and nurses are carrying, often with deep compassion and all the bodily strength they have.
When I feel demanding, stressed, and a bit traumatised by hospital days. By the questions, frustrations and medical challenges. I remember this moment and remind myself of the humanity of each doctor and nurse and the burden they carry.
So, here are a few small things you can do to highlight mutual respect and kindness in your interactions with your doctor or nurse:
We have found it is invaluable to greet first and ask about how they’re doing. “Hello sister, hi doctor, how are you?” It sounds small, but it shifts the energy immediately.
It’s a good idea to state your questions with kindness, not accusation. Instead of, “Why didn’t you do the test?” Try, “Can you help me understand why the test isn’t needed right now?”
Acknowledging their effort is a valuable step. “Thank you for seeing us today,” or, “I know you’re busy, and I appreciate your time.”
You can keep your tone calm, even when you’re scared or frustrated. Your calm can deescalate rising tension. Remember, doctors respond negatively to rudeness or emotional explosions. Even when your fear is valid. Staying steady helps them stay open.
It is a good idea to be kind but firm. “I completely understand your point, but as his mother I am still concerned. Can we explore this a bit further?”
Kindness doesn’t weaken your advocacy.
It strengthens it. Because when healthcare workers feel respected, they’re far more likely to listen, collaborate, and go the extra mile for your child.
And your child deserves that. One of our favourite go-to ways of supporting nursing staff at the hospital Brave has frequented so often is buying the ward staff a big tin of cookies to share. Food is a language of kindness in our country.
You Are Your Child’s Safe Place and Voice
At the end of the day, advocacy isn’t about being perfect, clinical, or unshakeable. It’s about showing up for your child, again and again, even when you’re tired, scared, overwhelmed, or unsure.
It is about choosing courage over comfort.
No parent gets it right every time. We have all cried in hospital bathrooms, frozen in appointments, or gone home wishing we had said one more thing. What matters is that you keep going. What matters is that your child knows you are fighting for them.
And as you grow in confidence, you will start seeing something amazing happen. Doctors will take you seriously. Nurses will trust you. Your medical team will begin to see you as a partner.
Not because you’re loud.
Not because you’re aggressive.
But because you are informed, prepared, kind, and unmovable when it comes to your child’s wellbeing.
That is advocacy.
That is bravery.
And you already have everything you need inside you to do this. You are doing better than you think.
You really are BRAVE.
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