Breaking the sound barriers

From: St. Petersburg Times, FL - Jul 18, 2004

Michelle Egan's goal for her twin boys is simple: to hear their voices, have them hear hers. Getting there will require a lot of hard work. So be it, she says.

By LANE DeGREGORY, Times Staff Writer
Published July 18, 2004

LARGO - You can hear the boy shrieking all the way out in the waiting room. Long, high-pitched howls - cries of anger, not hurt - coming from the therapist's office down the hall. You can hear the tantrum growing louder, rolling toward you, getting closer.

The boy's mom runs across the waiting room and catches him around his slim waist as he bursts through the door. She hefts him under her right arm, gripping him tight against her hip while he kicks and wails and beats her with his little fists.

Everyone in the waiting room is watching. The mom doesn't say anything. Doesn't soothe or scold the child. She just stands there, holding him tight, shaking her head and wearing a here-we-go-again look.

The speech therapist runs up, out of breath. "Shawn didn't want to work today," she says.

"Okay," Shawn's mom says. "Then we'll see you next week."

She carries the 4-year-old across the crowded waiting room. He's still thrashing, struggling. She bends and shoulders her bulky diaper bag. Then she taps his twin, Trevor, who is quietly munching cheddar Ruffles. His cheeks are fringed with orange dust. When he looks up, his eyes widen. He grabs his mom's hand.

Everyone watches as she marches her boys out of the doctors' office. They all know it could be their own child flipping out, and they're glad it isn't.

They can hear the boy shrieking all the way out to the parking lot.

* * *

If her son weren't throwing a tantrum, you might not notice Michelle Egan.

She's the kind of mom you see at Publix but don't pay much attention to - the one juggling diaper bags and groceries and herding children. She's in her mid 30s, round where she didn't used to be, dressed in a baggy Gators T-shirt and faded jean shorts. She has no money to join a gym. No time to take power walks. No need for makeup. What's a manicure? She lets her dark hair have its way.

She's not embarrassed to drink from a sippy cup. Drives her dad's minivan. Doesn't mind looking like a mom.

She earns no salary, never gets promoted. She is a full-time parent.

Most professional mothers (and quite a few full-time fathers) carry a heavy burden. Along with the givens - laundry, groceries, skinned knees, nightmares and eruptions of body fluids - some moms juggle two jobs, tend to distracted spouses, take care of grandmom, ride the bus or work through migraines.

Michelle's burden? She sleeps on an air mattress at her dad's house, talks mostly long-distance to her long-distance-trucker husband, has no car and no social life, and is raising three boys under age 8.

And two of them can't hear her scream.

This year, Shawn and Trevor, who were born deaf, became the first set of twins to receive cochlear implants at All Children's Hospital. The implants and an external processor send electronic impulses that the brain can learn to understand as sound. Eventually, the boys may be able to speak as well as hear.

So now, besides the daily demands, Michelle is trying to help usher her boys into the world of the hearing.

Spend a day - even a few hours - in her scuffed sneakers, and you'll wonder at this woman who wakes before dawn to recharge her boys' processors, who stays up after midnight building decorative birdhouses for extra money, whose big night out is going to pick up a pizza - by herself.

THURSDAY, JUNE 10, 3:30 p.m.

Out in the parking lot, Michelle buckles the twins into the van she borrowed from her dad. She tosses the diaper bag onto the front seat. Turns on the radio - loud.

Country. Classic rock. Rap. When Shawn is screeching like this, she'll listen to anything.

"His screaming, even at top volume, only sounds like a little whisper to him," All Children's audiologist Shelly Dolan-Ash had told Michelle. "He's testing out his voice. Trying to make himself heard. Eventually he'll get used to the sound of his own voice and learn not to do that."

"I hope so," Michelle had said. That was three months ago.

She tries to put up with the noise. She wants the boys to be like other kids, wants them to be able to hear rain against the windows and the crack of a bat against a ball. She wants to hear them say "Mama."

But sometimes, like this sticky summer afternoon, she can barely stand Shawn's strungout shrieking. She sets the radio dial to 93.3 and cranks up Ludacris.

Trevor is in his car seat, blinking straight ahead, oblivious to the racket exploding right beside him. Michelle watches her boys in the rear-view mirror. Then she turns to face them. When she sees they both see her, she holds up her right hand, palm out. She folds her middle and ring finger into her palm.

ILY. I love you. Their sign.

She turns back to the steering wheel, starts the engine and raps all the way to her dad's house.

* * *

Michelle's dad, her sister and her husband, Rob, all can hear. Her 7-year-old, Ryan, is hearing. Michelle had never known a deaf person before she had the twins.

Shawn and Trevor are fraternal. Doctors can't figure out why they both were born deaf. Shawn has a whisper of hearing in his left ear, but Trevor has been shrouded in silence from the start.

When the boys were a month old, their pediatrician told Michelle about cochlear implants. If they got them early enough, they could learn to speak in time for kindergarten. But the therapy after that would be long and hard, for the boys and Michelle.

"Everybody told me the cochlear was this big, emotional thing you go through with your kids. They cry. You cry. I was like, yeah, whatever. This is what we're going to do," Michelle said. "If your kid were born without a leg, wouldn't you want to get them a prosthesis?"

For two years, Michelle took Shawn and Trevor to see the audiologist every three months to get them ready for the surgery. She drove them to speech therapy classes twice a week. She checked out books from the library and taught herself sign language, then taught her sons. She enrolled the twins in preschool at Cross Bayou Elementary, Pinellas County's school for hearing-impaired students. While they were in classes, she called insurance companies, went to PTA meetings and impressed everyone with her gruff, tough love.

"We have to be sure the families are going to follow through and do what it takes to make these devices work," said Dolan-Ash, the audiologist, who evaluates kids to see whether they will benefit from cochlear implants. "After all, we're talking about strapping a $6,000 device on the back of a 4-year-old."

The entire procedure, including the processor, costs about $85,000. Of that, a family like Michelle's usually ends up paying at least $2,500. The family's health insurance covers the rest. But she has to pay for the batteries, cords and replacement parts - figure $150 per kid annually. Plus there are two co-pays at every doctor's appointment, every speech therapy session, every visit to the audiologist. Even with Rob's paycheck, they struggle to make ends meet.

Trevor got his implant last August. Shawn had surgery in late February.

"You've got your work cut out for you," the audiologist warned Michelle.

SAME DAY, 4:05 p.m.

Michelle's dad lives on a side street in Largo, off Keene Road. Most of the houses on this block look alike: 1970s single-stories with garages out front. Michelle turns into the yard of a gold one with a stone foundation.

She unstraps the twins, starts hauling out gear. Spider-Man backpacks and the diaper bag. Power Rangers and Shawn's sandals. A couple of McNuggets and some soggy fries left from lunch.

While Michelle empties the van, the twins sprint ahead. Trevor is a half-inch taller, a bit broader and quicker than Shawn. His crew cut is blonder. He looks more angelic. Shawn always seems up to something. He's still screaming.

Inside, Shawn somersaults onto the sofa, where his wail finally melts into hiccups. "There's my little loudmouth," says Michelle's dad, Leonard Ondick, hugging his grandson. "I could hear you coming all the way down the block."

Trevor tiptoes over to the TV and turns on Nickelodeon. Sabrina, the teenage witch, is talking over subtitles. The twins can't read. They've just finished their second year of preschool. But Michelle hopes seeing the words will help them learn letters.

"Shawn started that meltdown at speech," Michelle tells her dad. "He didn't want to go because he didn't want to leave McDonald's. Looks like it's going to be another long night."

* * *

Even after seven years with Ryan and four with her twins, Michelle isn't sure she was meant to be a mom.

She has always been a tomboy. She grew up competing with the boys, playing softball at Largo High. After taking a couple of computer courses at junior college, she played second base for a women's professional baseball team in Sarasota. That's right - baseball, not softball.

She wanted to be a cop. Or a paramedic. She was working at a sports bar in Atlanta when she met Rob. They got married, had Ryan a couple of years later. In 1999, Michelle became pregnant with twins.

Rob thought he could make more money up North, so the family moved to Michigan. He laid cable for a while. Just after Shawn and Trevor were born, his company collapsed.

"Rob got angry. He thought God was punishing him for something through the kids," Michelle said. "He's not religious. We don't go to church. But sometimes, I don't know, it makes you wonder."

When the twins were almost a year old, Rob took a job driving 18-wheelers across the country. "We needed the money," Michelle said. "We needed insurance for the boys."

And she and her kids needed a place to stay. So they moved to Largo, back to the house Michelle grew up in, to live with her dad and her younger sister Connie.

Rob stops by a couple of times a year, whenever he gets a run to Miami.

Michelle would like to have a part-time job. But who would drive the twins to school and doctors' appointments? Who would pick them up and take them to speech and work on their vowels?

SAME DAY, 4:45 p.m.

Shawn is hungry. He's tugging on Michelle's T-shirt, rubbing his belly. He folds his right thumb behind three fingers: M.

"McDonald's?" Michelle asks. "You want McDonald's again? Say McDonald's."

She tries to get him to verbalize everything. But he and Trevor have come up with their own sounds, their own symbols: M means McDonald's; sucking on one finger, as if slurping a straw, means thirsty; Shawn is starting to call Trevor "Ta-Ta."

Michelle has seen some progress since the implants, she says. Trevor tried to say milk the other day. Both boys are beginning to turn when she calls their names. The therapist told her they're probably hearing like 6-month-olds right now. They're trying to understand what all the sounds mean.

"McDonald's. You want McDonald's?" Michelle tries again, pointing at the paper bag.

Shawn runs his finger down the golden arches. "Mmmmm," he says. "Mmmmm."

Most nights, Michelle doesn't have time to make dinner. By the time she gets the boys home from speech or the audiologist's office (a 45-minute drive in her father's van), unpacks their backpacks, listens to phone messages and opens the mail, her kids are ready to eat. Plus there are baths to give and laundry to fold and, oh yeah, she's supposed to be helping the twins work on vowel sounds. So McDonald's it is, boys. You want fries with that?

For now, Michelle pours Shawn a cup of milk to go with his leftover McNuggets. She spreads peanut butter on a slice of bread and takes it to Trevor. Ryan is on the road with his dad this week, so there's one less mouth to feed. Back in the kitchen, Michelle pops her second vitamin of the day.

"And when that's not enough," she says, shaking a prescription bottle, "I've got Zoloft."

* * *

Michelle's alarm goes off at 5:40 every morning. She slaps the snooze a few times, hits the shower by 6. After she pulls on shorts and a T-shirt, she checks the batteries in the boys' processors.

Then she wakes the boys. She can't call to the twins to get them up, so she has to shake them. She wrestles them into their clothes and shoes, brushes two sets of teeth, combs two heads of hair. Then comes the hard part.

Their processors are about the size of a cell phone, strapped to harnesses the boys wear on their front or back. Michelle has to get the straps around Shawn and Trevor's arms, then affix the magnetic coil above their right ears. She has to turn on their boxes and check the input.

"They still run away every morning when I try to put them on them," Michelle said. "They're still screaming when I turn them on. I guess they're not used to sound yet."

The kids gobble bowls of Cap'n Crunch. Or, if there's time, Michelle drives through at McDonald's. She gets them out the door by 7:30, into their classroom by 8.

This summer, school lasts only until 11:30 a.m., so she's back to pick them up by then. McDonald's for lunch. Today, she met with PTA parents there, so the kids played in the indoor playground. Michelle had to take their processors off so static electricity from the slide wouldn't wipe out the computer programming.

The twins can't wear their processors when they go to the beach, take a bath or go to bed, either. Unlike other surgeries, the implants provide only a part-time fix. When Michelle takes the devices off her boys, they slip back into their silent world. They can't hear their mother calling or hear the other kids as they play.

Before Michelle buckles the harnesses back on, she makes the twins touch a metal pole. "Go ground yourself," she says.

They got to speech by 3 today. By 3:30, Michelle had survived Shawn's meltdown.

And there's a parents' meeting at the boys' school at 6.

"My sister Connie said she'd watch the boys. She does that for me sometimes. She's great," Michelle said. She can't leave them with anyone else, really, because no one else can communicate with them. And she doesn't want her sister to have to change their diapers. "I try not to leave them for more than an hour or so."

Some moms do aerobics. Others join book clubs or plant gardens. Once a month or so, Michelle asks Connie to watch the kids so she can sneak time to herself at Capogna's Dugout, a sports bar. She never does delivery. She orders two pepperonis, to go.

"While they make it, I have a rum and Coke," she said. "If the kids are really getting to me that day, I have two."

SAME DAY, 5:45 p.m.

By the time Michelle comes back from the kitchen, both boys are sitting on the couch, eating. She turns down the TV, slings a plastic sword off a cushion and squishes between her twins. She grabs Trevor's McDonald's cup from the coffee table and slurps at the melted ice.

The Egans never eat in the dining room. The table is piled high with paints and paintbrushes, plastic football helmets and wooden birdhouses, Michelle's only outlet. And even these aren't for her.

She's trying to earn extra money selling crafts to friends and neighbors. "We need it to buy batteries and replacement cords for the boys' processors," she says. "After I put the boys to bed, I come out here and work on them."

All three boys sleep in Michelle's old bedroom. Her sister still sleeps in her childhood room. Her dad has the master bedroom.

So every night, after everyone is asleep, after she has built a birdhouse or two, Michelle pulls an air mattress into the living room. She unfolds it, pumps it up, drapes a sheet across the plastic dimples. She falls asleep watching TV.

* * *

"It sucks being pretty much a single parent. It sucks not having my own place," Michelle says as the boys finish their makeshift dinner. "But I know a lot of women who've got it a whole lot worse than I do."

She laughs that her life is not like the pages of Ladies' Home Journal. Who has time to read Ladies' Home Journal?

"I don't understand why things worked out this way," she says. "So I don't waste time trying."

After 10 minutes, she checks her watch. It's time to go to the parents' meeting. Shawn clicks the TV to Cartoon Network.

Trevor curls into a ball and closes his eyes. Michelle rubs his back. "Do you want me to take that off?" she asks, tugging at the harness holding his processor. Normally, the twins can't sleep if they hear any noise. But this time, Trevor shakes his head. He snuggles his face into the cushion and sighs. "I love you," Michelle whispers into the microphone above his right ear. "I love you."

Shawn sits up and rubs his nose. He can't stand it when Trevor gets attention. He looks at Michelle. He tugs at her T-shirt to make sure she's watching. Then he puts his lips together . . .

"Maaa!" he says. "Ma-Maaa!"

Michelle beams. She's been waiting four years to hear that. "Mama! Yes, Mama!" she says, reaching to hug him.

But Shawn pulls away. He has something else to say. This time, he needs his hands. He sits back on his heels. He grins that impish grin. Then he thrusts his right fist into Michelle's face. Folds his middle and ring fingers into his palm.

ILY. I love you.

That will always be their sign.

-- Lane DeGregory can be reached at 727 893-8825 or degregory@sptimes.com

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