Heading Into Understanding

His eyes fixated on Zach like a lion’s on an antelope. So much so that he didn’t – at first – see my glaring eyes turn toward him. I stepped slowly behind Zach as he slowly circled the table topped with little ceramic planters and fake plants. Zach ran his thin fingers over the plastic leaves. He was oblivious to the man behind the counter and his cold stare. Thankfully.

At first, I figured Zach was caught in his crosshairs because he was running his hands over the merchandise. But as we strolled further into the shop, with Zach’s hand in mine, the man’s eyes followed. I glanced at him over my shoulder, and he immediately busied himself as if embarrassed to be caught staring. I thought about that saying from childhood days: Take a picture! It’ll last longer!” but I zipped my lips.

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Moments later, as Zach and I headed to the front of the store, the man’s stern eyes inspected Zach again. Although there was a chill in the air, a familiar heat rose up inside me. Then, he spoke, in a Boris Karloff Grinch-Who-Stole-Christmas way:

“Tuning out then, huh? I bet that’s nice for you.” He smirked. “Music calms the beast.” His tone was reproving. If I had held an item in my hands, I would have left it on his countertop and told him to f@#% off. But I had no item, and (luckily?) my teacher brain took over. After a composing breath, I spoke.

“Actually,” I corrected with my eyes fixed on his, “those are noise-reducing headphones. They don’t play music. They help him cope with noise.” I put my arm around Zach’s shoulder and stood still.

He nodded ever-so-slightly but stared at Zach again. I leaned over to break the weight of his stare. “Is there something you want to ask me?” I spoke with forced neutrality as I felt mama bear coming out.

The lion slowly rotated his head toward me (with an air of superiority) and said, “No.”

“Fine.” I walked out with Zach under my arm and gave the lion a glance over my shoulder that said you’re an ass.

©KeriMeHome

“Don’t worry about people like that,” I assured Zach. With noise-reducing headphones on his ears, he can hear, and his understanding of what other people say in his presence is keen. “Some people just don’t understand. Sometimes we have to help them understand.” I said. He nodded.

Zach didn’t always wear noise-reducing headphones, but I cannot recall exactly when he started wearing them. I’m so used to them at this point that when he is without them, it almost looks odd to me. They are a part of his outfit, just as much as pants or shirts. And Lord they do help him. I’ve tried them on to see what it’s like, and they “take down” the buzz going on all around you. It’s rather like having a protective shell – not just over your ears but down to your feet. It’s amazing what sound reduction can do for your nerves. Think for a moment how calming it is inside a library…or how relaxing a hushed, serene spa can be. I believe this is what Zach’s headphones do for him. And it sure beats walking around with your wrists on the sides of your head, or your earlobes rolled into your ear canals.

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Through the years, and more-so now that he’s a young adult, people we’ve encountered have had across-the-board reactions. To headphones!? Everything from the gentle glance to the critical comment. The man in the ceramic planter store was on the extreme end, and unfortunately there are others in that group. Said a realtor touring our house once: Those will shut him up, won’t they? A random woman in a park shouted: Hey Mom, why don’t YOU wear those so you don’t have to hear HIM? A stranger on the street: Hey kid – can you hear me? You can’t hear me! Huh? Huh? Museum guard in Washington, D.C.: Get those offa your head! Hear me? Hey! Take ‘em off NOW! You his mom? Take them off! Teenage boy: Going to a shooting range?? Guy in a restaurant: I should get some of those…then I don’t have to listen to my parents either!

There have been inquisitive bystanders. Do those play music? Where did you find those? Are those for shooting? Can he hear with those on? Can I ask you about those headphones? Are they expensive?

There have been knowing smiles and support. My son wears those too! Looks like those keep him focused. So great you have those! Hey buddy, I like your headphones!

©KeriMeHome

I’ve wondered what Zach thinks and feels about his headphones. They go on after he gets dressed in the morning, and they come off (and stay in one particular place) each night. Like eyeglasses. The current pair is his first pair; I’ve bought replacements, and I’ve purchased other styles of headphones, but he likes the original ones. The plastic is flaking off, and the foam is pitted. Although the earpieces were pure red about ten years ago, they have faded to a Cripps apple pinkish red. He adjusts them slightly a few times a day, but generally, once they’re on, they’re on. He often has an indentation across the top of his scalp from ear to ear, especially when he puts the headphones on with wet hair. But he doesn’t mind. The benefit of suppressing vexing sounds must outweigh a semi-matted mane.

With every autism-related, sensory-assistive accessory we’ve tried through the years, the headphones have stood the test of time. Weighted vests: been there, done that. Compression clothing: yup. Silky scarves: no go. Resistance bands for arms and legs: too inconvenient. Chewelry: definitely had a place and a time. Slap bracelets: they reappear from time to time. It’s the headphones that have staying power.

What people don’t always know is that he can hear just fine when they’re on. He listens and responds to what we say. He plays music on the stereo and knows exactly when the last song ends. He hears the doorbell, the kitchen timer, the buzzer on the dryer, the phone. Sooner than I can, he can detect the garage door opening. He hears the children next door playing in the yard (with our windows and doors closed). Certain commercials attract his attention. And once when Pharrell Williams’ “Happy” played on my car stereo, he began hip wiggling in the back seat. I suppose some of the flack we take from negative sorts has to do with them thinking all sound is being blocked. That either he is choosing to “tune out” (and we allow it) or we are somehow disengaging from each other. I once had a woman claiming to be a therapist tell me that he’s never going to learn language if you stop him from hearing.

He hears. All too well. That’s the reason for the headphones. It’s called hyperacusis (or hyperacousis). It’s an extreme sensitivity to certain frequencies and volume ranges of sound. There is delicate tolerance to everyday environmental sound. What’s confounding about it is that a person with this debilitating disorder may cringe and experience pain from the mildest of noises (say a door closing) and yet may not react at all to an ambulance screaming by in the next lane. And, the next day, the ambulance causes an extreme reaction but the door – nothing. Hyperacusis, reports estimate, affects up to 40% of those with autism. FORTY~

We made it through a loud Cubs game at Wrigley Field! ©KeriMeHome

With rates that substantial, society as a whole is going to have to better understand the need of the person with autism to wear headphones everywhere – not just in what society deems a noisy environment. Noise is subjective. We’ve been asked at shopping malls, museums, airports, and amusement parks to kindly (or not so kindly) remove them. When the option was view the Declaration of Independence without the headphones or leave the museum, we removed the headphones. When the mall security guard insisted the headphones get removed, I insisted they stay on. He won’t be able to tolerate the noise of the crowd without them, and I am holding his hand at all times, so I really don’t think wearing headphones put anyone at risk here. I never thought I’d have to advocate for headphones, but I do. And it’s okay.

I’m personally grateful for noise-reducing headphones. They help my son consistently everyday. They can reduce noise levels about 25 decibels. What does that mean exactly? Well, headphones have a noise reduction rating (NRR) that speaks to the level of protection offered. If you have headphones with an NRR of 25, and the rock concert you attend has a noise level of 100 dB, your level of exposure with headphones on is 75 dB.

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For comparison sake, here are the ratings for some everyday sounds. Rainfall is around 50 dB, while normal conversation is around 60. A noisy restaurant could be about 80 dB, while a plane taking off comes in around 140. The loudest sound ever measured on Earth? The explosion of the Krakatoa volcano in August, 1883. It was heard 1,300 miles away and believed to be 172 dB. The sound waves shattered the ear drums of a crew aboard a ship 40 miles from the island. Watching fireworks fairly close to the launch pad? That’ll deliver 160+ dBs to your ears. Obviously I cannot accurately describe or rate how sound feels to Zach’s ears, but by all accounts, I’m guessing that our normal everyday clamor feels to him like a constant barrage of chain saws (120dB) or never-ending thunder (125dB).

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I think that’s perhaps how people with extreme sensitivity to sound feel in everyday situations – as if their ear drums are under attack. I postulate that Zach has unpleasant internal and physical reactions to certain (and many) sounds, given his facial expressions, shoulder scrunches, anxious behaviors, and distressed vocalizations. Simple, inexpensive, noise-reducing headphones make the tumult more manageable. To people without these challenges, it can be difficult to comprehend: Just deal with it! So what if it’s noisy? You know that “nails on a chalkboard” thing we used to use to describe irritating experiences (before chalkboards went extinct)? What if for people like Zach, most of the noise around them IS like nails on a chalkboard?

When the stares come our way, as they do, I will continue to chime in about what noise-reducing headphones do. When the comments are harsh, as they can be, I will continue to sound off about the purpose of the ear wear. When there appears to be little understanding, I will try to ring in better understanding. When we encounter others in headphones, I will toll the bell like they do at Trader Joe’s. Okay…no. I won’t do that. The noise will scare Zach. I will give that knowing smile right back and remember we are not alone on this journey. I want others to hear that loud and clear – we are not alone in this journey. If wearing red or blue or bright pink or camouflage noise-reducing headphones draws attention to my son, so be it. His vivaciousness, his charm, his enduring spirit…that’s what they will see if they look closely enough. Hmmm…I wonder if acceptance-increasing eyeglasses could ever become a real thing.