Advocacy is defined as the act of pleading, supporting, or recommending. For many parents of medically fragile children, advocacy is a skill that is learned as they develop teams of doctors, nurses, and therapists. We learn to navigate a tricky hallway where there is a professional at every door telling us their opinion. Unfortunately, in many cases with teams of doctors and therapists, the views of cause and solution vary and often are opposite of the other.
How do you make sense of opinions of the same issue that are drastically different?
How do you advocate for care when doctors don’t even agree?
Most parents don’t birth children and have a medical diploma follow the baby with instructions. Most parents don’t work in the medical field, have medical training, or know anything about psychological and behavior management. We trust our team to work together, help one another, and most importantly help us as parents to make the choices we need to make to help our children.
My son has many complex issues and we have amassed specialists that cover numerous parts of his anatomy and his mental health and development. We have more than a dozen professional that are providing us information, managing his care, and helping my husband and me determine the best course of action for his long-term health. Our experts are brilliant, many are the top of their professions and have decades of experience in treating children with the ailments that land us in their office. They are also not familiar with my son’s specific disease, not always privy to what parts of our team are communicating, and at times looking to me as their expert to guide them.
Over the past five years, this has put me in a precarious situation where I am forced to make decisions and ask doctors to treat my son based on the experience I have gained in being his parent. This knowledge may be helpful to you, as a parent with special needs child, to master the art of advocacy for your child.
Educate Yourself on the Disease or Disorder The old saying knowledge is power is very relevant when caring for a complex child. When your child is diagnosed with a disease, syndrome, or mental health diagnosis, you will need to educate yourself on the topic. In the internet era, there is a ton of information available to you via websites, chat rooms, and non-profit organizations that support your child’s disease or disorder. Medical conditions can be complicated to understand, but many websites are dedicated to breaking down the symptoms, treatment, and management of the disease. Understanding how it will affect your child, what to look for, and how to treat it will be imperative to your child’s long-term health and wellness. Keep a Journal or Log symptoms Doctors and therapists love data and the more data you have when you go to appointments the better. This is an area I haven’t excelled in as most of the data is stored in my head. However, there are numerous apps you can download to a phone or iPad that will organize the health of your child. Symple App, Catch My Pain, My Pain Diary, and WebMD Pain Coach, are just a few examples of apps you can download to your phone to manage symptoms and make daily notes on the changes you are seeing in your child. I rhttps://www.webmd.com/webmdpaincoachappecently starting using Symple App to journal my son’s neurological symptoms for his neurosurgeon. Going to appointments with data will help your doctor understand on a daily basis what you are seeing in your child.
Find a Complex Pediatrician or Primary Care Physician
Organizing the needs of a child with multiple experts on your team is tough to manage. Most specialists are explicitly trained to handle the symptoms that bring you to their office. They are not prepared to look for global reasons for pain or symptoms but are prepared to help you manage the pain or symptoms their specialty covers. There is a critical need for you to have a member of your team that is there to help you coordinate care, sort through opinions of experts, and look at your child from a global perspective. They will be there to help you tie together symptoms that may be affecting multiple areas and help you identify causes. These doctors are also instrumental in managing the long-term health of your child by making recommendations to improve quality of life, reduce illness, and help you with resources. No parent should be alone on this journey, and you need someone to lead the charge.
Remember You are in the Driver Seat
A friend of mine once told me, “Katie, I drive this bus.” This is important for any parent to remember when working with experts. Experts and doctors are great, but you are not required to keep a member on your child’s team if you have a difficult relationship with them. We hire experts and doctors to treat our children, and we are their customers. It is important to remember they are working for you, and you are the one that has an ultimate say in your child’s care. Do not forget that you are not required to do anything you are not comfortable doing. Parents have the authority to make choices for their children regardless of the desire of the doctor. If you have a personality conflict, find another doctor in the same field. There are dozens of specialists in most metro area that serve the same need. In no part of this journey are you required to keep someone a part of your team that does not serve your family well and causes you stress. Making changes can be difficult, but I promise you having the right people on the team is just as important as the team itself.
Make Tough Calls
One of the hardest parts in advocacy is when you are forced to make very difficult decisions for your child. When you have done your research, tracked the symptoms, and assembled the team, then it’s up to you to direct the team to take the necessary steps needed to help your child. Sometimes this will mean that you will have disagreements with doctors on the right course of action for your child. If a doctor is a team player, your feedback and your expertise in your child should be received by them with respect and a consideration of their recommendations. There will be times you may have to balance doctor or expert ego with what you know is the truth for your child. While many do have vast knowledge and expertise, you are the true expert. Be assertive without being confrontational on what you need them to do to help your child, and ask them to respect your place as the child’s true expert of the team. You are not always going to agree with your child’s doctors, but you don’t have to agree to work together to find a solution.
Advocating for your child will not be an easy task, but with the strategies I have provided, I hope that you can do it with a little more confidence. All of us want the best for our children, and that starts with making sure their medical and psychological care is arranged. You are the most critical member of your child’s team, and you are the one that will make all the final decisions. Good luck, and keep on fighting!