Persistence Matters: One Parent’s Advice on How to Advocate at the Doctor's Office

One mom shares her experience in the doctor’s office and how she learned to advocate for her daughter with hearing loss. Listen to her perspective and learn why persistence matters! 

Lydia H., a mom and Family Support Community Ambassador, describes her experience with her daughter, Rose: I’ve often been asked how I advocate for my daughter at appointments. It’s not easy! I think our natural tendency is to hear what we want to hear. When Rose was born, I kept asking our local doctors (five of them) if her hearing loss and malformed ears were related. They ALL told me it seemed like a coincidence. And that was good enough for me — that’s what I wanted to hear. But I also knew there was NO WAY it was a coincidence. So I finally went to see the right specialists — a pediatric ENT and pediatric audiologist — and from there I was referred to 10 more specialists. Obviously, the hearing loss and ear anomaly were NOT a coincidence. That experience taught me a lot, not just about “the mommy gut feeling” (which we know is ridiculously accurate), but it taught me that I have to be much more aggressive (in a good way to effectively advocate for my daughter. 

Here is the list of tips and tricks I use to help me be her best advocate at a doctor’s appointment. I hope other parents find it helpful as they advocate for their own children! 

ASK FOR HELP

Don’t worry about the doctor’s time or bedside manner. He or she is there for your child and for you. You want to get the most out of the appointment. Of course, be courteous and friendly, but tell them that you are new to this and looking for help. You need their honest assessment and feedback. Please tell them you’re looking for next steps. 

BE HONEST

Parent report is critical! They’re seeing your child for only a few minutes in a small room or sound booth. You have to accurately explain what things are like at home and school. Don’t worry about judgment or what the doctor will think of you. Who cares! This is about your child. It’s okay if you didn’t notice that they were not hearing well because they seemed to respond to you — the reality is that you know now and you’re doing something about it! TELL the doctor everything you have noticed or what you’re concerned about — right down to the details. It all matters and it is all helpful! Don’t try to sugarcoat it. Just be honest.

DO NOT BE AFRAID TO ASK QUESTIONS

If you don’t know an acronym or the words the doctor is using — stop and ask for clarification. It’s okay! Don’t feel embarrassed. Remember the doctor does this all day long and, in most cases, this is your first introduction to hearing loss terminology. Words like ABR, sensorineural hearing loss, conductive hearing loss, hearing aids, cochlear implants, bone conduction hearing technology, CT or MRI scan can be confusing terms for most of us!

Ask for their recommendations for trusted websites and resources that help you understand and learn more. If you are more curious, ask for trusted peer-reviewed research articles.

HAVE A PLAN

If you’re there for a diagnosis — be sure to GET IT. And if you don’t get it, schedule another appointment until you are able to obtain all the tests, procedures, blood work, and/or assessments. Sometimes you might hear the doctor say the word "optional" when describing other tests or procedures. Or sometimes you might hear "an MRI might be helpful" or "we could do PE tubes." Find out more information on how these procedures will help your child and advocate for it! 

You also need to understand WHY there is hearing loss because often it can be managed better if you know the cause. For example, if your child has conductive hearing loss, it may be corrected with surgery. 

You also want to know about other implications as well. Is it genetic? Could it be associated with other anomalies? Remember KNOWLEDGE IS POWER.

LEAVE WITH A PLAN

What do you need to do when you walk out the door?

• Schedule a follow up because your doctor will want to monitor your child. 
• Schedule LSL therapy, hearing device fittings, ongoing audiology assessments and possible PT or OT if indicated. 
• What is your “homework”?
  • Be sure your child is wearing their devices during all waking hours and check the hearing devices daily to be sure they are working! 
  • Become aware of developmental milestones and observe and discuss with your doctor and LSL provider the progress your child is making to reach their milestones. 
  • Practice the LSL strategies and techniques that your LSL provider is coaching you to use during all the lovely interactions you have with your child every day. 
  • Do you need to read more? Learn about the diagnosis? All the more reason to ask for trusted websites and resource recommendations from your doctors.