Do You Understand the Doc?

Clear communication with your child’s specialist can often take planning, work and advocacy.

Whether it’s using high-level medical terminology or delivering care instructions too rapidly, specialists treating kids with special needs can be difficult to understand.

“It’s a common mistake for doctors to talk over patients’ heads and not connect with them,” says William McNett, MD, chief of general pediatrics at Thomas Jefferson University Hospital in Philadelphia. Consequently, parents need to take measures to make sure communication is clear.

“A child is dependent on his parents’ communication skills,” says Charles Scott, MD, a past president of the New Jersey Chapter of the American Academy of Pediatrics. Nobody knows a child like his parents, says Dr. Scott, a Virtua doctor who practices in Medford, NJ.

Communications can be difficult and the parent-doctor relationship “can be an intense one,” says Steven Bachrach, MD, co-director of the Cerebral Palsy program at the Alfred I. duPont Hospital for Children in Wilmington, DE. That’s especially true in the hospital or after a recent serious diagnosis for a child.

It can be challenging to listen to the doctor’s instructions and to ask the right questions, but these communications can be crucial to a child’s care. Here are some tips for getting the most out of your relationship with your child’s specialist.

Steps To Establish A Good Dialogue

“When the diagnosis first comes in, the parent is not going to hear 50 percent of what is being said,” says pediatrician Charles Scott, MD, referring to the stunned state that often comes over parents when receiving serious news about their child. Here’s how to prepare for a diagnosis and subsequent meetings with a specialist.

Slow It Down

“Some doctors are good at speaking in plain English and some are not,” says Dr. Bachrach. While you want to understand everything your child’s doctor has to say, don’t be afraid to ask the doctor to slow down and use simpler terms.

Many people are embarrassed to admit they don’t know certain words, and may be hesitant to interrupt because they don’t want to appear impolite. But understanding your child’s doctor is crucial. If you don’t understand a term, stop the doctor and ask for an explanation. It’s even reasonable to ask the doctor to spell some words for future reference.


To help you receive and retain all of the information the doctor gives you:

  • Bring another adult to the appointment when you anticipate receiving a lot of information.
  • Bring a voice recorder to capture the conversation with the doctor, which you can play again later for yourself, your spouse or others involved in your child’s care. Ask the doctor’s permission, but most will agree to a recording for private use.
  • Bring a list of questions so you don’t forget what to ask.

Agree on a Plan

Make sure you understand and agree to the plan of treatment for your child’s disability. Important questions include:

  • What are the next steps?
  • When should the child be seen again? You might request a follow-up visit, perhaps a week later. This gives you time to think of additional questions.
  • What circumstances would cause you to call the doctor before the next scheduled visit?
  • What are possible side effects of medications and treatment?

Set Ground Rules

Managing expectations from the beginning will smooth communications with the doctor. To understand the groundrules, you can ask:

  • How can you get in touch with the doctor? Is e-mail okay?
  • When you call, will you speak to this doctor, or will other doctors or nurses in the practice be involved?
  • At what times can the doctor be reached? What if you need help at other times?
  • How quickly will the specialist respond in a non-emergency situation?
Involve Your Pediatrician

You might need to see a specialist more frequently than your pediatrician, but don’t lose touch. “The most important thing is to have a good primary care doctor to help guide you through a difficult diagnosis,” says Dr. Bachrach.

Your child’s pediatrician can be a good resource for information about specific medical concerns. Make sure the specialist and the pediatrician are communicating. Your pediatrician can keep track of your child’s case, especially if more than one specialist is involved.

Don’t Hesitate to Advocate

“People need to advocate for their own care, and as parents, you need to advocate for your child’s care,” says Dr. Bachrach. “It’s imperative that parents be advocates on behalf of their child,” concurs Dr. Scott.

Advocacy includes making sure you understand your child’s doctor and that the doctor understands what you need to know. Ask questions often and challenge the doctor if necessary. Your child can only benefit.

Suzanne Koup-Larsen is a contributing writer to MetroKids.

Categories: Special Needs Parenting