A critical skill in advocating for your child

When you have a concern about your child’s health or how your little one is growing and learning, the first person you may turn to is your doctor. Seeking medical advice is important in the care of your child, especially if your child has a disability. There may be many specialists involved in the care of a child with complex medical needs. In order to be a strong advocate for your child, it’s important for you to learn how to make your concerns heard and understood.  

 

The videos discussing strategies for talking with your doctor use several terms to refer to your physician and the staff in the office. You will hear the term “medical home”, “medical home provider” and “physician”.  

The concepts “survelliance” (looking at a child over time) and“ screening”  (looking at a child today) are covered in this video and help to explain how  a doctor might work with you to address your concerns.

Keys to effective communication

You Know Your Child Best. Your observations are important for planning the care and medical treatment for your child. The information you have plays a part in making sure the plans and interventions are working. You spend the most time with your child and know his likes, dislikes, what he can and can’t do, his behaviors, strengths and needs. So learn to be a good observer.

Be Prepared. Before a medical appointment, write out a list of questions. Come prepared with information and descriptions of what concerns you. Use your journal or activity log to recall the timing of events or when and how certain behaviors occurred. For example, if you are worried about your baby throwing up several times a day, make a note of each instance, recording when it happened, where it happened, what your baby had eaten and how much your baby had eaten. During the appointment, take notes to record the answers you get, so you’ll remember them later.

Communicate Your Concerns At The Beginning. Often you will see a nurse or physician’s assistant before seeing the doctor. Share your concerns and questions. They may be able to answer some questions for you, leaving more time to spend with the doctor. 

Share Information and Updates. Don’t assume your doctor knows anything about what happens outside his or her office. When your child is receiving services (such as Early Childhood Intervention, private therapy or through a public school ), make sure your doctor has copies of evaluations and plans for services. You will need to sign a release form for certain information to be shared. Tell your doctor about any little bit of your child’s progress, good or bad. What you might think is insignificant could be important to your doctor. You might even send an occasional picture of your child with a note highlighting a new skill he has gained.