When our son was diagnosed, we went to every single doctor we could find. We wanted to gather as much information as we possibly could. And man, we weren’t disappointed. We got binders on binders on binders of information related to him and his disability. And all of those binders now sit on a shelf in our office.
One specific appointment sticks out in my memory. Due to his diagnosis, there is a major possibility that my son will experience hearing loss. We were told that we needed to get his hearing checked every six months. We tried to do a “normal” hearing screening on him, but he didn’t really take it too well. So we had to do a sedated Auditory Brainstem Response (ABR) test. They put him to sleep and connected diodes to his head to see how sounds register in his brain.
The test came back inconclusive. But at least we were told that at that point his hearing loss was minimal. We were told to come back in 6 months. Six months later we tried the same hearing screening. We got the same result. It was suggested that we do another sedated ABR. At that point in time, my wife started wondering if it was worth it for us to ask this question.
To see if it was worth it, we had to do some legwork. We had to go see a few more doctors. We had to find out if there was anything we could even do if he was losing his hearing. We found out that the answer was no, we couldn’t stop the hearing loss. We could just functionally improve it through hearing aids.
So, given that we couldn’t stop the hearing loss, we decided to be more aware of his functional hearing instead of worrying about tests. To us, he could hear. He responded to his name and other sounds. We had no doubt he could hear. We knew it probably wouldn’t register normally with an ABR…. but who cares? We agreed that when we noticed functional hearing loss then we’d ask the question about his hearing.
It was a profound moment for us. We realized that yes, information is good. But we’ve got so much information floating around us that sometimes it’s just nice to focus on observation. Simply put, we decided not to “ask the question” if we weren’t going to do anything with the information. There’s no point in doing a bunch of tests if the information is just going to sit on a shelf somewhere.
My advice is this: if you’re thinking about doing some tests, ask yourself first what you’re going to do with the information. If it outlines a clear pathway for you, then fantastic—it’s well worth your time and effort. But if it’s just to have the information, then maybe think about whether it’s worth your time in the first place.
Knowing more about what questions to ask your child’s doctor is a good place to start.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.