As a mom with two kids with significant special health care needs, I have had my share of experiences with professionals. I have lost count of the number of doctors, nurses, teachers, therapists, case managers, and social workers that have crossed our path at one point or another. When I think back to all of these people, I have some fond memories and some not so fond memories. My hope is that after you read this, you will become one of those professionals whom parents and patients look back on fondly.
Those first months after my son was diagnosed I was timid when speaking to all the professionals who were all of a sudden invading our life. Don’t get me wrong, I would ask questions; but if I didn’t get an answer or was rushed through an appointment, I didn’t push. Many times when my child or I was treated unfairly or unkindly I wouldn’t say anything to defend us. I would just cry after the appointment and feel powerless. It only took me a few months to realize that if I was going to be the best advocate for my child I had to start advocating where it mattered most. I knew that I was going to have to change my approach, but I also had to figure out what it was I wanted from all these professionals.
I decided that I wanted to be a meaningful part of the team. I wanted those professionals to speak TO me and not at me. I wanted my child to be seen as an individual and not fall into the trap of “what we usually see” with no higher expectations. I wanted the professional to speak to and acknowledge my child even though he couldn’t verbally respond. I wanted honesty with compassion. I wanted realism with hope. I wanted real conversations. Most of all, I wanted to be heard. I wanted the person sitting across from me to understand and acknowledge that I was also an expert. I could tell you what each cry, facial expression, and movement meant. I could tell you what helped, what didn’t, and what made things worse. I was the one person who was present at every meeting, doctor appointment, procedure, and therapies. I was the one up late almost every night on the internet and at the library reading and searching for answers which, frustratingly so, also gave more questions. I was a wealth of knowledge, ideas, and questions just yearning to share, brainstorm, and be part of the problem solving process.
With each passing year I find that as a parent I become more comfortable, more confident when speaking to all the professionals in our lives, new and old. This is due in part to those professionals who have treated me and my family as a real part of the team and not as an unwilling and uneducated participant. There are many doctors, therapists, teachers, nurses, social workers, and case managers that I owe a huge THANK YOU to because they fulfilled my list and more. By listening to me and working with me, they were able to perform their job better which in turn gave my child better quality care.
So if you are a professional who is listening to the parents, making them a meaningful part of the team, and treating the patients as individuals I salute you. I salute your dedication, hard work, and determination. Lastly, I wholeheartedly thank you.
Resources for you
As your child’s most consistent caregiver, you know your child/youth with special health care needs (CYSHCN) in ways that no one else does. You want to be sure that your child’s health care needs are met. You need to share what you know with the providers who treat your child. Tell them if something is wrong with your child. Let them know how your child responds to a treatment or medication.
You can develop partnerships with your child’s doctors and other providers. These partnerships will help your child receive the best healthcare. Start with clear communication between you and providers. Be sure to share your cultural differences so that they do not become barriers to access and service.
You might find this tip sheet on Communicating with Providers helpful. Feel free to contact us if you need additional resources.