By Cathy Jameson
Take time to read. Ask the questions you need to ask. Learn what your rights are. Protect those rights. And always, always trust your instinct.
Moms are often told that they know their child best. They hear that statement in the doctor’s office and sometimes by their child’s teacher. When I hear it being said to me, I hold my head up high. It’s as if someone has just given me a badge of honor, “Cathy, out of everyone here, it’s you who know Ronan the best!” And it’s true.
In the past, when I was told that I knew Ronan and his needs the best I questioned why it needed to be pointed out to me. Of course I knew my child. I’ve spent the most time with him! Of course I knew what he needed. I evaluate Ronan and his needs daily! It was a no brainer that I absolutely should be considered “the” expert on Ronan. It’s not only what I was, it is who I have become.
Most people who would think to say to a mom that she knows her child best do so with the utmost respect. But, I’ve found out several times now, that the “You know your child best!” statement can be delivered two ways. The first way is done so as a compliment. The second way it can be delivered is adversarial. That shouldn’t happen, but it does. It happened years ago to me.
At the end of a long day of medical testing, I was told, “Mom, you’ve done a great job. You have concerns. We’re impressed that you want to get Ronan some help. You know him best, and you’re right, Ronan does need help.”
That day was an incredibly difficult day, but hearing the compliment and knowing that my concerns were indeed legitimate, I sat up straighter in the uncomfortable exam room chair. Oddly, as quickly as I was told that I knew Ronan best, my concerns and input were disregarded.
After reviewing the results of one of the tests, one of the doctors said that Ronan would need to start a medication immediately. The medication came with a host of side effects that sounded far worse than the condition they wanted to treat. After hearing the side effects, and also being told the drug would offer no guarantee that it would lessen what Ronan was going through, my gut told me no. Why would I want to compound the issue he was facing with new issues, one of them being fatal?
I wanted to verify my apprehension with the team of doctors and nurses who were assembled in the exam room on behalf of Ronan that day. I asked the lead doctor why he was prescribing this particular medication. Thinking maybe I was being overly concerned because I was the least medically savvy out of the group, I needed to hear that my uneasiness about the medicine was in fact justifiable.
I stammered, “Uhhh…well, it just doesn’t seem like this drug is the right one if it causes more problems and has such intense side effects.” While I asked the question, I looked to one of the nurses to see if I could read her reaction. I saw her eyes dart from my gaze. The resident stood stoically silent next to his mentor. The head doctor and his partner stared down at me. I felt myself shrinking into the now very uncomfortable chair as I waited for their answer. I wondered, did they mean to butter me up and then shoot me down in one quick moment? Why would they do that when they just told me everything I’d done for Ronan was the right thing to do, including bringing him to the clinic for these tests?
I continued, “Doctor? Isn’t there…isn’t there something else? Some other therapy? Any food or supplements we can try first to address what’s going …”
At this point, my “Mom Knows Best” title was ripped away, shredded and dumped in the plastic trash can in the corner.
“Mrs. Jameson,” he started. “Mrs. Jameson, here.” Shoving a piece of paper in my direction the doctor’s tone immediately changed. He lunged toward me with prescription in hand and demanded, “Fill the script. Just fill it, Mrs. Jameson.”
Against better judgment, I did fill that script.
Ten months later we learned that Ronan should never have been given that particular medication.
“Mom, you know your child best!” Unless it’s a professional telling you that you don’t.
I learned a hard lesson the day. I trusted someone more than my own mother’s instinct. I depended on someone else for all the answers. I put nervousness aside and blindly did what I was told to do. As unfortunate of a lesson as it was, that lesson shaped how I have since handled certain situations including certain people.
I feel more confident now as Ronan’s mom when I’m in similar situations with medical professionals as we discuss Ronan’s health and possible treatment options. I’m no longer the sit-down and listen parent. I walk in the exam room ready to learn, discuss and contribute as much as possible. If something sounds off, I ask for more information. If something doesn’t add up, I ask what the alternatives are. I try not to go in with my dukes up, but I don’t mind putting them up when someone thinks they have the final say in a decision that I’ve been asked to help make.
Those who truly want what’s appropriate for Ronan, what is best for him, are hard to find. But when I find them, I welcome them with open arms: his teachers, his therapist and his current team of providers. I lean on them and I trust them with Ronan’s needs and most importantly with his life.
“Mom, you know your child best!” Yes, I do. As Ronan’s Mom I am constantly thinking about his needs. I’m brainstorming, researching and implementing what I can do to meet those needs. I’m juggling how to make them attainable with everything else that goes on including with Ronan’s siblings and with our family as a whole. It isn’t an easy task, but it’s one that I’ve accepted in my role as the Mom, the Mom who knows her child best.
Cathy Jameson is a Contributing Editor for Age of Autism.