Ear Candy

“Hi, is that your son? The one with the orange earplugs?”

I don’t even have to look to know that she’s talking about my kid. Earplugs are a standard part of his attire, especially here, at an echoing indoor soccer field filled with special needs athletes and their aides and coaches.

The other mom gestures towards our kids who are gathering at the center of the field for their closing circle. “Sorry, but my son seems to be pretty fascinated by your son’s earplugs.”

Her child sits as close as he can to mine, ignoring the coaches and instead staring intently at the side of my kid’s head.A_Spring 08 earplugs

My son gets his fair share of notice due to his earplugs. For awhile, the only foam earplugs we could find came in fluorescent orange or some other obnoxious color—to, what, demonstrate quickly to the foreman that we are following the safety protocols? Not such a great choice when trying to subtly integrate a sound-sensitive kid. Whenever I find the rare beige-colored ones, I buy in bulk.

When my son was six years old, he suddenly developed an unexpected aversion to the playground. At school, he refused to go outside at recess, which was odd for a kid who loves to run and climb and swing. After some investigation we determined that it was the noise level—the chaotic unpredictability of his classmates’ loud voices.

B_Dec 05

His teachers and I eventually coaxed him back outside, with the help of extra snacks and a social-story-poem complete with sound effects of playground noises on PowerPoint slides. (Yeah, somehow I had more time back then).

But from that point on, his sensitivity to noise became more apparent. My boy began covering his ears at any loud or unanticipated noise—but especially others’ voices. So much so that he was having trouble doing things because his fingers were busy plugging his ears.

Our life became a game of treacherous navigation. I learned to anticipate the sounds that would most aggravate him so I could give him fair warning if the culprit could not be avoided or, when possible, steer him clear of the worst offenders entirely.

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  • At home, the vacuum, hair dryer and ice dispenser had to be used strategically and only with prior authorization. My routine for making a morning smoothie involved placing all ingredients in the Vitamix and then carrying the machine to the farthest end of the house, behind two closed doors, before turning it on.
  • We doctored the speakers on his toys with felt or cotton balls and duct tape—why do they make them SO loud, and with no volume control?
  • He resisted people speaking too loudly, or talking over each other. Those who cleared their throats, coughed, or sneezed garnered no sympathy. Teaching him to say, “Bless you” instead of “NOOO!” is still an ongoing challenge.Cc_Summer 07
  • In the public restroom, the looming threat of an automatically flushing toilet—and the unpredictable ones in the next stalls that could strike at any moment—combined with those menacing air hand dryers to make a pee-stop a stressful experience.
  • At school, the raucous cafeteria demanded daily ear protection. And forget third-grade music class. Twenty-five kids playing recorders? Just no. He skipped that entire unit.D_Summer 08 SkullCandy

Our photo albums show the gradual transition from occasional moments of hands-over-ears to the more regular appearance of headphones or earplugs. Now noise reduction is just a normal part of his daily routine—on school mornings, we head out the door donning socks and shoes, backpack…and last, but never least, earplugs. He knows the various places his earplugs are stashed (backpack, bedroom, living room drawer, my purse, the car) and he chooses to wear them when he anticipates too much noise.

Early on, I worried that he would grow too accustomed to hearing the world through earplugs and would never be able to cope with it un-muffled. I also dreaded the stares and odd questions that wearing ear protection invariably provokes. Kids always ask what’s in his ears. Adults usually just make their own assumptions—like the friendly guy who asked him how he did at target shooting.

E_ears w Guerry036

 

I’m wondering what this kid at soccer practice must be thinking about my son’s ears, but I’m used to the questions by now. Just as I begin to tell his mother not to worry, her kid reaches out and snatches the earplug out of my son’s right ear.  His mother and I both gasp as—in the next beat—her kid decides to see how a sweaty orange foam earplug tastes.

I really didn’t see that one coming.

This is life with “sensory” kids!

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Opening Doors

Standing on my back patio, I watch my five-year-old son through the sliding glass door. He bounces around the kitchen on his large blue exercise ball, happily unaware that he has just locked his mother out of the house.

Opening Doors_lockHe didn’t mean to lock me out. I stepped out—just for a moment—to throw something away, and I left the door open. After I went around the corner of the house, my son simply returned the door to its “normal” state: closed, with the latch pointed down. That’s how the handle always looks from the inside. Like many other autistic people, my child exhibits a keen awareness of his surroundings, and tends to “fix” things that he deems out of place. Lights on that should be off, books rearranged on shelves, doors that must be closed, and latches returned to their down and locked positions.

“Unlock the door, hon,” I say, shaking the handle. He rolls his ball over to the door and presses his palms against the glass. He grins at me and sits back down on his ball. I instruct him: “Pull up,” and mime lifting the latch. He slides off the ball and copies my hand motions in the air, his fingers hovering inches from the handle.

“OPEN DOOR, B__,” I demand, failing in my attempt to keep the growing worry out of my voice. My son laughs and repeats, “Open door, B__!” But he does not understand.

It all comes down to this—all the hours of behavioral and speech therapy, doctors’ appointments, IEP meetings and filing cabinets full of data sheets and treatment goals. If my son founders on a simple instruction to unlock the door, what does it matter if he knows his colors, his shapes? If he can recite the alphabet forwards and backwards? What does it matter if he expands his limited verbal ability to place “I want” before a request for juice or a cookie, if he fails to comprehend my words when danger looms?

Opening Doors_keys

I run across the street to my neighbor’s house to call my sister-in-law, the only person with a spare key since my husband is out of town. Her phone goes to voice mail. I race back home, convinced that my son is either upset by my absence or getting himself into some kind of trouble. I find him perfectly content in the air-conditioned house, bouncing on his ball near the kitchen table, taking bites of his lunch. Dear God, please don’t choke.

I go back to my neighbor’s house to call a locksmith, cursing myself for not hiding a key outside. The locksmith estimates his arrival at twenty minutes. How many things can go wrong in twenty minutes?

B_ball_2003_2I return to my patio to wait where I can watch my kid behind glass, trying every so often to get him to let me in. From my isolated vantage point, the newly exposed hazards of my once-child-safe kitchen mock me. I begin to strategize. Which window will I break if he grabs that sharp knife off the counter, or if he climbs up on the still-warm stove? Can I throw this metal patio chair hard enough to break the glass if he falls off that damned ball and cracks his head on the hard tile floor? Oblivious to the threats that surround him, my son laughs and bounces and taps on the glass between us.

Just as I reassure myself that at least I can keep an eye on him, my kid leaves the room. He runs into my bedroom where, of course, the window shades block my view. I cannot see him, but I hear him jumping on the bed, a favorite pastime that I instantly redefine as reckless. He yells, “Jumponthebed!”—one of the rare times he calls for me to play. I stand helpless to respond.

Then it happens. My son reappears, running into the kitchen and over to me at the door. He pulls on the handle, notices the latch and—without hesitation—flips it up and slides the door open. I am stunned by the speed at which my dilemma evaporates. My kid, in turn, looks bewildered by his mother’s enthusiastic and borderline hysterical response. I cry and hug and sigh and he just smiles, as if to say: It’s about time, Mom, what were you doing outside for so long?

It is not always about ability. More often it is about motivation. My child could easily learn how to unlock the door; he just needed a reason. People with autism spectrum disorders sometimes find it difficult to see the world from another’s perspective—my need to get inside, to get past that locked door, didn’t concern my son. Until it became his need.

Years later, this experience still shapes my interactions with my child. Of course, we moved the goal of teaching the instruction “unlock” to the top of the priority list (and yes, we now hide a spare key). But, the most important thing I can do is to give my son ample reason and motivation to use and strengthen his abilities; to discover what will entice him to open the doors that stand between us, waiting to be unlocked.

jumponthebed!!!

jumponthebed!!!

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This piece, originally posted on Stay Quirky in May 2012, also appears in this beautiful anthology:

Monday Coffee & Other Stories of Mothering Children with Special Needs

(Darolyn “Lyn” Jones and Liz Whiteacre, eds.)

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Snake, Please: A Tale of Keeping it Together, Man

“Snake, please.”

His words, barely audible in the crowded grocery store, demand my attention. I pull my cart over by the frozen chicken and turn to face him. I can see immediately that we are about to have a problem.

“Snake, please,” he says, holding out a red rubber snake in his left hand. One snake. That’s not right. I shouldn’t have let him carry them in here today – and on the rare day I forgot to stash a couple of spare snakes in my purse.

Lizard Spin Read the full post »

Think Globally – World Autism Awareness Day – 4-2-14

In 2007, the United Nations General Assembly unanimously declared April 2 as World Autism Awareness Day, aiming to promote the rights and well-being of the autistic around the world.

Ki-moon Top

While we who are already “aware” of autism get worn out sometimes by “awareness” campaigns, today’s message from United Nations Secretary-General Ban Ki-moon reminded me of an important international campaign that deserves our attention here at home: Read the full post »

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