Having two children on the autism spectrum, I’ve studied all about sensory processing disorder. I’ve read The Out-Of-Sync Child by Carol Stock Kranowitz and all of Temple Grandin’s books. Intellectually, I understand that the five senses that I know so well don’t work the same for some people as they do for me. I know that many people with autism are pained by sounds, smells, or lights found in our everyday world. I could read it, understand it, and even empathize with it, but I couldn’t really feel it until I got my own case of man-made sensory processing disorder.
To tell this story, I need to start with my job of 20 years. No, wait…I need to go back even farther than that. I began playing the clarinet in 6th grade band at age 11. By the time I was in high school, I was in love with the clarinet and played wherever I could. Concert band, marching band, orchestra…you name it! After high school, I earned two degrees in music and then joined the U.S. Air Force Band as a clarinetist. So for the last 33 years, I have experienced the almost daily barrage of trumpets, drums, and other musical cacophony in my ears. Yes, I could have worn ear plugs all that time, but I rarely did. When I was younger, I didn’t care about the damage to my ears. And by the time I was old enough to care, I was serious enough about my playing and my career to not want to play in an ensemble without being able to hear the players around me and match with them. In reference to playing an instrument with ear plugs, a conductor that I know once said it would be like asking a doctor to perform open heart surgery while wearing dark sunglasses.
About 3 years ago, I started noticing that when I was in a large group setting (rehearsal, meeting, lecture, etc.) I was having trouble understanding what was being said to the group. I could tell that the person up front was talking, but their words were muddy and incomprehensible. The same thing was happening while watching TV at home. After asking my husband over and over again, “What did he say? What did she say? What was that again?” he finally starting turning on the captions for me, which made us both much happier. I haven’t watched television at home without turning on the captions for several years now. I know my coworkers who sit next to me in band rehearsal get annoyed with me when I keep asking them what the conductor just said, but I can’t understand the words anymore. So I finally saw an audiologist and she concluded that yes, I do have hearing loss significant enough that I would benefit from hearing aids.
At first, I dreaded getting hearing aids for the same reason I have dreaded the gray hairs on my head and the wrinkles around my eyes. Just great – another thing that will make me look older! I had no idea the impact wearing them would have on my life in general. When the audiologist initially put them in, I was hit with a gigantic WHOOSH of sounds. The first thing that struck me was the sound of the “tick tick tick” of the clock on the wall. Then I shifted in my seat. WOW!!!!!!! The sound of the fabric of my pants rubbing against the fabric of the chair was absolutely excruciating. With every move I made, the windbreaker I was wearing swished and swooshed, making a sound like an avalanche and a rocket launch happening at the same time. After less than 5 minutes, wincing with pain, I thought, “Well, this was a nice experiment, but wearing these is definitely not going to work out for me!”
Then the audiologist showed me how to turn the volume down. At about 30% volume, I could tolerate the sounds being hurled at me, and I was no longer feeling unbearable pain. So I left the office, vowing to myself to give the hearing aids a try, and promising the audiologist to wear them for at least 8 hours a day. When I got home, I was greeted by my exuberant children. SB’s “HI MOMMY I’M SO GLAD TO SEE YOU!!!!” hit me like a freight train. A really loud freight train. Boy, that kid needs no amplification! Ordinary sounds that we generally ignore, like the heat pump in my home, the microwave oven, and the clothes dryer went from necessary modern conveniences to things I desperately wanted to turn off because they were so damn loud!
The next afternoon during the “helping with homework/preparing dinner” part of my day that is already pretty stressful, I started to get unusually irritable. My head was pounding, the world was TOO LOUD, and everything my family said and did became unbearably annoying. I made it through dinner, snapping at the kids in a mean and cranky way while we ate. But as soon as dinner was over, I went to my bedroom, shut the door, took out the hearing aids, took some Advil, turned off the lights, and climbed into bed while I cooled off. I didn’t understand what was going on at first – I’ve certainly had headaches before, and I’ve gotten annoyed at my kids before, but I had never before felt like I needed to turn off the entire world because I just couldn’t take it. But then it hit me – this was the first day I had worn the hearing aids for a full day. THIS must be what it feels like to have sensory processing disorder! When everyday sounds that don’t seem to be bothering anyone else are just too much to handle. Yet someone with sensory processing disorder can’t turn it off like I can remove the hearing aids, and some may not have the cognitive skills or the language skills to explain why they are so uncomfortable. How incredibly frustrating that must be!
I hated wearing the hearing aids for the first week. Just absolutely hated it. But I stuck with it, because the audiologist had told me how important it is to wear them consistently for the first month to get used to them. You have to sort of train your brain to understand life with amplification, and slowly the brain is supposed to learn to filter out the sounds that are unimportant. After a week, I realized that it was slowly getting better, but those first days were tough.
Wearing hearing aids while playing the clarinet or while in a band rehearsal is completely out of the question. Even when practicing by myself, mid-range notes create squealing feedback in my ears. The first time I was wearing hearing aids and walked into work before a rehearsal while my coworkers were individually warming up, our E-flat clarinet player hit a nice, loud high note. She is a wonderful player, and there was nothing wrong with the note, yet the amplified sound hit my brain like an ice pick and brought tears to my eyes. Note to self – always remove hearing aids before entering the rehearsal studio.
Not only has this experience helped me understand what sensory processing disorder might feel like, it has also made me sympathetic to my own son and his hearing loss. SB was diagnosed with hearing loss and got his hearing aids about 2 years ago – long before I seriously thought my own hearing was deteriorating enough to do anything about it. After I got my hearing aids, I immediately felt sympathetic to him when I realized that pediatric hearing aids don’t come with the option to turn them down – his are at full volume, all the time. No wonder he complained so much when he first got them! “It’s too loud!” he kept saying, yet I held my ground and insisted that he keep wearing them, because the audiologist had told me that he needed to. I was completely unaware of how uncomfortable he might have been in that first week or so. And like me, he adjusted, and now doesn’t seem to be bothered by them at all. But now that he has joined band at school on the trombone, I wonder how band rehearsal feels to him. He’s never complained about it, so maybe it doesn’t sound so loud for him. Should I suggest that he take his hearing aids out during band? I’m not sure that’s a good idea. He’s kind of a forgetful dude – if he takes them out during the school day, the chance of him losing them is pretty high!
It has been 2 months now, and I’m still not sure how I feel about wearing hearing aids. Many days, I feel like I still can’t understand what people are saying, but now it’s because background noises are being amplified much more than speaking voices, and so the words that I desperately want to hear people saying are being drowned out by fans and motors. I think it’s going to be a big adjustment that happens very slowly. Although I’m handling life with hearing aids better now, I do feel a sense of relief at the end of the day when I finally take them out – similar to the relief I feel when I remove my bra at the end of the day! Aaaahhh…much better!