How to Create a Partnership with Your Pediatrician
Tips from a parent and a doctor on how to create a partnership with a pediatrician for your child with special needs.
We all want the best care for our children, and a crucial part of good care for any child is finding a doctor that is knowledgeable, experienced and compassionate. This is especially important for kids with special needs, who often require more doctor visits and more medical attention.
My own daughter, Annie, has been to dozens of doctors and specialists in her 15 years because she has autism spectrum disorder (ASD) and other diagnoses. She was diagnosed just before the age of 2 and I knew immediately that I needed to find a good doctor. But more than that, I quickly learned that I needed to work closely with our pediatrician in order to make the most of her appointments and her care.
Here are four tips to foster a positive relationship with your child’s doctor:
Prepare a list of questions and concerns.
Often, there are so many issues and worries to address when you learn your child has special needs that it can sometimes be overwhelming. I always kept a folder with Annie’s most important medical information, any new test results or recommendations and a sticky pad of questions that I compiled since the prior appointment. I brought this folder to each appointment. This allowed me to fill him in on her most recent therapies and medical concerns, and gave me the opportunity to ask the specific questions I saved up for him.
Get to know the office staff.
The nurses, physician assistants and administrators who assist the doctor are incredibly important people. If you take the time to get to know them, and allow them to know your family, they can really make a difference in the quality of the appointment. We used to send our Christmas card to their office every year with a note from our family. Sometimes, I’d even drop by with a fruit basket or something unexpected to just say ‘thank you.’ This went a long way in showing them our family’s appreciation of their care for our children, but also in helping them to remember us!
Take a “test run” or two.
Even from a very young age, Annie knew when we were going to the doctor. She would begin to cry and tantrum when we turned onto the street where the doctor was located. She had a lot of anxiety about going, which quickly turned into my own anxiety as well – dreading the upcoming appointment. Our pediatrician and I worked together to plan visits for Annie that were actually pleasant. To begin, Annie would go in, sit in the waiting room for a few minutes and be called back to the room. The doctor would pop by and say hi, and then Annie would get a prize of some kind. The next time, we would extend the wait a little longer, and let the doctor listen to her heart and check her ears. Then Annie would get another prize. Over time, Annie realized that her doctor was actually nice and fun, and not someone to be feared. Now, Annie feels very comfortable with her doctor.
Speak up if you aren’t sure of something.
True partnership means that both the parents and the doctor feel free to ask important questions of each other to ensure the best decisions are made. This means two things: giving truthful and complete answers to the doctor and feeling comfortable to respectfully ask questions of your doctor This sort of open collaboration allows for both the doctor and caregiver to make appropriate medical decisions together, without feeling judged or worried about repercussions.
Your relationship with your child’s doctor is essential to making sure that your child gets the attentive, informed and comprehensive care that she deserves. By investing time strengthening that relationship, together you and your child’s doctor can help your child to thrive.
Tips from a Pediatrician
Pediatrics often requires a level of patience and care that is uncharacteristic of other specialties. However, unique challenges arise when a patient with developmental disabilities enters an office. The anxiety of children with special needs is not the same as other children. They need a step-by-step understanding of how the office works, and what will happen during their appointment in order to feel comfortable. Above all, doctors must gain trust so they not only can provide the highest level of medical care, but also become an ally and friend to the child and parents.
In finding treatment for children with special needs, here are four key things to look for in a doctor.
Takes time to listen.
This may sound obvious, but it is invaluable. And it’s not just about listening. Does the doctor schedule enough time to have a conversation and to conduct a thorough examination when needed? Does the doctor ask questions to clarify what you and your child are seeing and experiencing, and carefully listen to the responses?
Does the doctor ask you and your child about experiences and daily routines, education, caregivers, aides, etc. to gauge our child’s level of cognition and function. While autism is a diagnosis, it’s unlike other medical diagnoses, such as diabetes or asthma, where our focus is relatively narrow and standard. One family may have issues feeding their child, another may have problems with physicality, another with education.
Communicates and is transparent.
The doctor should address your child, even from a young age, directly and in an age-appropriate manner, using her name and avoiding “baby talk.” If your child is hyperactive or stimming (e.g., repeating physical movements or sounds), the doctor should act as if he is sitting quietly and appropriately. A doctor must remain calm, speak softly and allow your child several minutes to warm up to her before attempting any sort of physical examination. During the exam, I like to speak with the patient the entire time, complimenting him on how well he is doing in the office, and narrating what I am doing and why. I almost always finish the exam by complimenting the patient and thanking him for letting me perform the exam. I also say what I found. While not always successful the first time, an approach that focuses on communication and transparency, repeated consistently, should result in optimum comfort and success.
Your doctor should be extremely accommodating including with forms, appointment times, letters of medical necessity and phone calls to other specialists.
Amy Kelly is Devereux Advanced Behavioral’s Health Director of Family and Community Services. Bradley J. Dyer, MD practices in Exton, PA at All Star Pediatrics.