The relationship between your child’s medical provider and you as parent(s) is very important.. When you have a provider who will listen to the differences your child experiences with various issues, you can accomplish so much better care and understanding. There are things the doctors just have to trust the parents about. Thus, the relationship must be strong.
Reading the signs our children give is always a challenge. Your instinct and skill at reading those signs is very important. Trust your instinct even though sometimes it will not be 100 percent. Share your “gut instinct” with the doctor even if it seems silly.
Medical professionals are often put on pedestals, expected to be able to fix everything. As Kate Crow, Genetic Counselor, points out in the Foreword to Parenting Your Complex Child:
“Medical researchers don't study many complex children. As health care providers, we depend on the published research to inform us so we may provide advice and guidance to families. If a patient is "complex", and doesn't fit the description of a single condition described in the research literature, we are left with little to share.” Excerpted by permission of the publisher from "Parenting Your Complex Child" by Peggy Lou Morgan © 2006 Peggy Lou Morgan, published by AMACOM, division of American Management Association, New York, New York. www.amacombooks.org
My son’s first psychiatrist reminded me that medical education couldn’t possibly cover every potential that will occur in every person. When we can combine our knowledge with the doctors medical expertise better care is accomplished for a child.
Communicating that knowledge can be complicated. There is a lot to share with the doctor if your child has many complexities. If your child is excessively active or noisy during the visit it is easy to forgot the issues you wanted to discuss with the doctor or become fragmented in explaining your concerns.
A summary created from your notes in an easily to absorb format helps the doctor to glean the significant factors, have time to ask questions, or discuss issues as well as a more thorough examination than might be accomplished while you are trying to explain while dealing with your child. Most doctors appreciate the time you take to prepare and recognize the value of the documentation.
Brice Stanley, PA-C, my son’s primary medical provider recently emailed me his feelings about working with my son (shared here with his permission):
"I am excited to see** your son. Why? Because... despite the enormous challenge he presents each and every visit I find a unequalled satisfaction in seeing him trust me. I feel content to see your well-done behavioral logs that make my job so much easier. I also have a strange satisfaction in knowing that we have made some difference in his perception of daily quality of life when he smiles in the exam room."
"Each day that I see Billy I learn something new. A better way to communicate, or a more intuitive way to observe his behavior, or how important it is to read reports you bring. Each of these things presents a new challenge and satisfaction in my career. I look forward to seeing him because I get to partake in his well-being and LEARN at the same time."
There are risks involved in medical care of all kinds. It seems heightened for complex special needs children. Risks are frightening but not totally avoidable. When we have done all that we can to have a relationship with the medical professionals for our child and feel confident in his or her understanding and care for the child, we have to relax in that confidence. An incredible comfort comes with that acceptance and trust.
After a recent surgical procedure I wrote a post on my blog about the peace in trusting your medical professionals. Brice Stanley happened to read the post and left a comment. Here is part of that comment, used with his permission:
"Remember too, that providers have peace in trusting patients as well. It is always comforting to know/trust that certain patients will provide accurate histories and follow through with treatment or whatever may be the agreement. Notice I do not use the word compliance. I dislike that term tremendously. It projects a sense of "parental control" over a patient. I have peace when a patient and I work together as a team. When they respect my medical opinion, and I their desires for their own health....things go far better in the office. As you mention in your new book, kicking butt, fighting, resisting are all terms and approaches that truly have no place in the "TEAM" concept of healthcare. And I obviously believe in the "team concept" as a PA-C."