A close inspection of Zach’s nostril, something we don’t habitually do, revealed a reddened area of concern. After a month-long wait to see an ENT, in we went. I had tried to schedule a time when Zach’s home program aide could go along. Doctor visits have gone decently well in the past, but a crying baby in the waiting room can wreak havoc on Zach’s sensory system. Having another adult with me allows one of us to remain in the waiting area while the other takes Zach to a quieter zone.
It’s not just screaming babies that bother Zach. Someone chewing loudly, a small dog yapping, a glass shattering, all have the power to elicit a strong reaction. He has had auditory sensitivity (hyperacusis) since he was a toddler; at least we believe this to be true because of what we witnessed. He would often stiffen in loud environments. He cried. He screamed. And when he figured out that holding his elbows at ear level dampened the noise, he often walked around in that position. I don’t remember when we learned about noise-reducing headphones, but what a saving grace! Zach wears his almost all day.
So, the ENT visit with 2:1 was not going to happen. It was Zach and me. I crammed some sensory toys, including the never-fails-to-calm corn brush, into my purse, along with relaxation-inducing essential oils. I hoped that the doctor would not have to perform some procedure on Zach’s nose. I would have to partake of those calming essential oils myself, if so. Things sticking in noses – especially if blood or mucus is present – give me heebie-jeebies.
Off we went to Sutter Medical Center for a mid-morning appointment. I thought mid-morning meant less of a wait. Not so. We seated ourselves in the waiting area on chairs that looked in desperate need of upholstery replacement. Heebie-jeebies again. How many rear-ends have been parked upon these very cushions? I try not to think about such things. Diagonal to us sat two women side by side; one was swinging her foot left and right like a branch in the breeze and the other stared straight ahead. Somewhere behind closed doors I heard a child squeal. And you can bet Zach did. He turned abruptly and emitted a sound of disapproval, pointing with his middle finger (not meant in the traditional middle-finger way, mind you; he just doesn’t point with the index finger like most people do).
“Oh, yup, I heard that too. It’s alright…” I reassured him. He turned back around but appeared to be bristling.
Moments later, the heavy main door swung open and in walked a woman and a toddler. He was making happy toddler noises, but for Zach, any toddler noise can be a torturous noise. Zach’s legs began to bounce rapidly. Being somewhat of an expert in Zach’s body language, I knew his anxiety was rising. I narrated quietly and provided reassurances. The duo sat to the left of the two women; at about 3:00 from us. The office door squeaked and swung open to reveal a nurse. I hoped she’d say “Zachary?” but knew that the women had been waiting longer. Her call was for someone who had obviously left the room earlier. She disappeared.
Little by little, the small room filled. A man with a large belly and a beard. A woman using a walker. A couple with three kids. THREE KIDS?? Alert Alert Alert! The father was trying to hold one of them upright by the wrist as the child’s legs bent beneath him in noncompliance.
“NOOOOOOOOO Da-da NOOOOOOOOO!” the child shrieked, like so many do who see or smell a doctor’s office and go into flight-or-fight mode. Zach wheeled around, voiced disapproval, and pointed with the middle finger. Out came a string of quiet reassurances directly into his headphone-covered ear. (He can hear while wearing them).
“Stand up Matteo! Daddy said ‘Stand up!’” The man said with composure. The woman checked them in and took seats to our left at 9:00.
“HI! HI! HI! Hey you! Boy! Hi!” I was suddenly aware of a tiny voice calling. It was the youngster to our right. Zach was staring without blinking at the shrieking toddler at 9:00.
“Hey Zach, that little boy said hi. Can you tell him ‘Hi’ with your device?” I gently nudged his shoulder. Zach responded and pressed the Hi button. The mother looked pleased and surprised. The youngster exclaimed, “What’s that Mommy?”
Since the question was directed to the boy’s mom, I did not answer. She was sharp and quick: “That is how the boy speaks. Isn’t that wonderful?” If she had looked in my eyes, she would have seen delight and appreciation. The two women to their right glanced over and one gave a chuckle of amusement.
“Isn’t that something?” she said. “How does it work?” Her foot stopped swaying. With that question directed to me, I answered. I thought in the back of my mind that I need to program a button in the device so Zach can answer that for himself.
The youngster continued, “What’s your name?” Before Zach could locate the button, the shrieking toddler screamed which shook even my eardrums. Zach’s entire physique seemed to expand like a pufferfish. Hurry up in there doctor, please make this go quickly. It never does.
I prompted Zach to press “I’m Zach,” even though I don’t like to prompt too much. Swinging-foot woman said, “What’s that? Matt?” I had Zach press the button again, and it was one of those moments where everything in a room suddenly goes quiet which made “I’m Zach” sound awfully loud. Everyone knew he was Zach.
Now engaged in an interaction, the youngster showed understanding and patience. Unfortunately, his name was the next one called and the kind mother and inquisitive boy left the room. Zach’s legs began bouncing again. He looked at the noisy child like an eagle spotting a mouse. Sweat began forming at my brow.
Moments later, the bearded man’s belly gurgled rather loudly. Another one of those momentary silence spells, so everyone heard the gurgle, including my headphoned son. He emitted his “I heard that!” vocalization and produced the middle finger, thrusting it in the direction of the man’s Santa-like abdomen. Something told me this man would not take kindly to a teenage boy in headphones pointing Tall Man at him. If Zach was still a toddler I could have broken into an off-key rendition of “Where is Thumbkin” starting with Tall Man’s segment. Brush it off like so; everyone’s happy. But an 18-year-old with stubble on his chin and bouncing legs…no can do.
What to do????? Nurse – pleeeeeeease call Zach’s name right now!! In a flash, I noticed that bearded man had one of those t-shirts with wolves howling under a gigantic moon. Quick! Say something! He’s looking at Zach like Zach is the mouse now!
“OH! You are looking at the man’s shirt! It’s got your favorite animal on it! Tell me with your device what you see!” And thank goodness, Zach followed my lead and went straight to “wolf” on his device. Swinging foot lady chuckled and said, “That’s so great!” Bearded guy kept a straight face and said nothing.
Somehow, the dad to our left quieted the scared toddler. He was purposely quivering his own legs to bounce the boy, which apparently soothed him. Swinging foot woman and her friend were next. Off they went. The receptionist slid her small glass window closed, and it scraped against the rail. Zach’s head rotated left. He launched himself from the dirty upholstery and before I knew it, he was sliding the window open and placing the flowerpot of pens on the receptionist’s desk. She looked baffled.
“Sorry,” I said, “he thinks they go inside the glass.” She blinked and nodded and offered him a weak ‘thanks.’ I’m grateful for people who, even if they don’t quite get it, just tend to roll with something coming at them they’ve not dealt with before.
Escorting Zach back to the germ pillow, I was careful to position myself between him and bearded guy. Knowing the finger point and utterance was NOT about the wolf, I half expected Zach to push his ear into the man’s belly in order to get a closer inspection of the gurgle. He’s done this with family before, and they know him and see it coming, but —um, well, you know.
The heavy door squeaked open again, and Zach’s head spun in that direction. Simultaneously, the office door opened, and in the hall outside was a man talking on a phone. Next to him the elevator chimed. Someone coughed. The receptionist’s phone rang. I got a text. The woman’s walker squealed. The FAX machine chugged. Matteo’s mom was zipping her diaper bag. The man’s belly probably gurgled again, and – ZACH PROBABLY HEARD ALL OF IT. All together. Every single big and little sound. A giant cacophony of unharmonious noise assaulting his ears. Offending his sensibilities.
Auditory input galore. Visual stimulation 360º. Different odors lingering in the air. Uncomfortable chairs. Plus possible apprehension for simply being at a doctor’s office. As Zach plopped down and winced, I stood for a moment, almost dizzy. My mind seemed to swirl and expand as I consciously noted everything going on around us and imagining it from Zach’s perspective. It’s not “just hyperacusis;” when the auditory pathways are overwhelmed in light of SPD, there can be a full sensory meltdown unfolding. The room wasn’t “noisy” per se. I mean, compare the sounds of that waiting room to a New York subway at 5 PM or a Daytona 500 motor race. But for someone like my son, who plunged his thumbs in his ears to shelter himself from the abrasiveness of the world, the collective clamor had to be beyond difficult.
I sat down beside him and looked at his blond hair. His thumbs were now pressed into his tear ducts. His legs bounced. His feet tapped. He bent over, sandwiching the device between his knees and nose. He hummed monotonously. I reached over and rubbed his back. A different kind of understanding filled my heart. And although the room was packed with people, I felt it was only him and me in that waiting room at that moment.
Sensory Processing Disorder (SPD) is so common in those with autism that I feel like it should be the primary diagnosis rather than a co-morbid condition of ASD. Becoming more conscious of what Zach might feel reminded me of something I experience. I suddenly made an astonishing connection. When I am 37,000 feet above earth in a metal tube moving at 575 mph, and turbulence hits, I shove my fingers into the armrests. I bounce my legs furiously and tap my feet. I sometimes bend over and sway a bit to counteract the shaking of the plane. I purposely don’t listen to the pilot’s announcement if s/he talks to the passengers. I raise the volume on my iPod and sing along in my head. Anything to not feel the sensation of panic that inevitably sets in. I may look funny doing what I need to do, but I don’t really care!
Does Zach “care” that he is demonstrating what the world perceives as odd behavior? I don’t think so. He’s doing what he needs to do in order to get through a moment of intense sensory assault. Although, as I recognized it then, it isn’t simply a moment. It’s his daily life. Unrelenting sensory overload. Turbulence that he doesn’t see coming, that he cannot control, and from which he won’t recover quickly.
I leaned into his trembling body and whispered, “It’s alright. You’re doing great.” I felt his blond head give a nod. Not unlike I do when a fellow passenger says, “Hey, this is only potholes in the sky.”
The heavy door flung open. “Zachary?” This time I flung my head around and looked at the nurse. “Come on back,” she said.
I hoisted Zach by his elbow and put my arm around his waist. He brushed off the chair where he had been sitting. (Was he ‘cleaning’ the seat for the next person?) Once in the stuffy exam room, he began straightening magazines. He tucked the two stools into the corners. He “fixed” a poster on the wall. He turned off the light but left us in darkness, so we turned it back on. He made sure every drawer was closed all the way. The “obsessions” made more sense to me then, too. Coping mechanisms. I can’t control the assault to my senses so I will gain comfort where I can. Heck, maybe next time I’m flying across the jet stream somewhere over Colorado, I’ll straighten up the Skyways magazine or organize barf bags. If it works for him…?
Zach sat calmly and patiently while the ENT expanded his nostrils and shined a light inside. He held still and complied with the doctor’s instructions. He nodded ’no’ when the man asked if his nose hurt.
“There’s evidence of a break in there,” he informed me. He pointed at the area with a thin probe. “Probably happened a very long time ago…nothing recent, okay?” My mind sparked. “But the red spot has nothing to do with that. Just the way his nose formed. Nothing to worry about.” He reassured us.
I remembered that a long time ago, an aide in an after school program told me that someone hit Zach in the face. They underplayed it, as if it wasn’t hard or anything, no big deal. But hearing this from the ENT, I could only imagine that that was a big deal at the time. That he was hit in the face hard enough to have broken his nose. My God – how much has happened to him that I may never know anything about? I often think that the truth of Zach’s experiences is as invisible to me as are the potholes under the wings of the plane.
“I have a daughter with autism,” said the doctor as he took off the blue Latex gloves. Zach tried to put them away for him. He kept his large ungloved hand poised on Zach’s shoulder for a long moment.
“Tough go.” he said. I nodded.
“How’d he do in the waiting room?” he asked, with kindness in his eyes.
“Fine.” I said. “He did just fine.”
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Keri, you do such a great job of capturing what it is like to live in Zach’s world!
Kathy hit the nail on the head. You Captured it really well and gave us an insight into Zach’s world. Thank you. God bless you all.
You are such a good writer and capture Zach’s world with every detail. I had to laugh at some of this article so you brought in humor also.
Beautiful writer. Keep it going.
Wow! Great job Keri! My heart breaks that his nose may have been broken in that after school program! He is such a champ!
Beautiful writing on such a heartbreaking challenge. I am so proud of him and you!
Keri, Thank you so much for the rawness in your writings. I felt like I was in the waiting room with you guys! I too had to chuckle at a few points. You’re an amazing writer….Ever think about writing a book?? I love how you explain your interpretation of what Zach is going through. You are so good with him, it’s amazing to watch. Thank you
Keri, I felt so much while reading this. You captured so many thoughts and emotions we experience as parents with children with special needs. I am always excited when children or adults ask questions or talk to Hannah. It’s so much better than just staring. And not knowing what is happening to our children when they are not with us is terrifying. Great read! Thank you for sharing!