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Sean's echo

Out of a parents' grief comes a gift that speaks to a boy, just as it did to their late son.

By KELLEY BENHAM
Published June 1, 2004

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[Times photos: Chris Zuppa]
Speech/language pathologist Janet Skotko places a SpeechEasy into Lazaro Arbos' ear. The tiny receiver and amplifier echo the speaker's voice, tricking the brain into thinking someone is talking along with him, relaxing him and decreasing the stutter.

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Mother and son marvel at their good fortune after Lazaro Arbos, 13, speaks his first clear sentences after a device is implanted in his ear to ease his debilitating stutter. Gisela Andraca had seen the device, called the SpeechEasy, on television.

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Andy Anderson of Ocoee, left, and Reinaldo Arbos of Naples, Fla., record the moment that Lazaro Arbos received the SpeechEasy at the Voice Institute in Tampa on May 12.

photoRelief and joy warm Lazaro Arbos' face as he enjoys the sound of his natural, unencumbered, speaking voice. The SpeechEasy, visible in the boy's ear, is colored to match his skin and programed to work with his brain.

TAMPA - Nothing made sense when Sean died.

He was 10. He collapsed, heart quivering, and he died. The doctor walked into the waiting room shaking and told Sean's parents that 10-year-old boys don't just die for no reason. But if there was a reason, he did not know what it was.

Sean's parents were numb with questions. Why their son? Why a boy who was loved so much?

They were good parents, and they did all the things parents should do. Andy baked him cookies. Martha helped him with his homework but never gave him the answers. They ate breakfast together every morning. They made him check in on a walkie-talkie when he left the house.

When he squinted, they got him glasses. When he struggled with writing, they got him extra help. When he started stuttering, they spent months and thousands of dollars getting him a device that helped him speak.

It was working. He was funny and likable and popular and sweet. And then gone.

Martha Lopez-Anderson did not linger over her son's body at the hospital. It would have been painful and futile.

She closed his eyes and kissed him and wondered how to make sense of this, what to do now.

She didn't want to go back to her house. It was days before she could go near her son's bedroom, look at the things he left behind. But that was the first step.

That's where she found an answer.

***

Sean was chatty, just like his mom. His words tumbled out, even when he was small. He liked to impersonate her Spanish accent, switch into a Southern drawl. His parents said he liked the sound of his voice, especially when he sang. He never stuttered when he sang.

He had started tripping on his words in second grade. M-m-mom.

Lots of kids do that. Sometimes it's a phase. Martha and Andy didn't draw attention to it. They ignored the urge to finish his sentences, but the stuttering got worse. It got so bad he couldn't look at them when he spoke.

They took him to speech therapy. They made an extra effort to engage him in conversation. When they found out his teacher was coddling him by giving him the shortest paragraphs to read aloud, they told her to stop.

Sean didn't complain about the kids who teased him. He knew his mother would call the school and fuss about it, so he handled it himself if he could stand it. His mom said he looked bullies in the eye and said, as best he could, Look, I have a stuttering problem.

They wanted to protect that boldness in him. But he fought the words harder and harder. His neck would tighten and his face would freeze and his head would jerk around like some part of him was trapped.

N-n-n-

Like an engine that churns but won't start.

N-n-n-never mind.

* * *

Sean was 9 when Martha saw a complicated and expensive gizmo on an Oprah episode called "Medical Miracles."

It looks like a hearing aid but creates a soothing echo inside a stutterer's ear that relaxes him and helps him speak.

The speech therapist who designed it was on the Oprah show. He had stuttered his whole life. As a child, he had tried to barter with God: take an arm, but give me a normal voice. He stopped raising his hand in class. He dodged foreign-language requirements, job interviews and ringing telephones.

Martha imagined Sean growing up like that, slowly going quiet.

If this thing could help Sean at all, she and Andy were going to get him one.

It took months to find a speech therapist who could provide the device, called a SpeechEasy. There are only three such therapists in the state. The device cost about $6,000.

They drove from their home near Orlando to see speech-language pathologist Janet Skotko at the Voice Institute in Tampa. Skotko put the little thing in Sean's ear. She asked him his name. Like a lot of stutterers, Sean usually had trouble saying his own name.

"Sean," he said. It came out in one clear syllable, like it should.

"Sean Anderson."

Everyone remembers what happened next. He let out a long breath, like a boy letting go of something that had worried him a long time.

Inside his ear, it sounded like a tiny talking chipmunk. The SpeechEasy has a little receiver and amplifier in it to echo the speaker's voice. For nonstutterers, the effect would be maddening, a mocking rodent. But for stutterers, it's soothing, a buddy.

When Janet Skotko fits someone with the device, she watches for the long, relieved sigh that means it's working.

* * *

She has seen the little device do amazing things, but it's not a cure.

Even the experts don't know exactly why people stutter. Stuttering has been linked to a gene and it often runs in families, but people stutter in different patterns and the condition can have more than one trigger, including trauma or brain injury. It tends to make people anxious about speaking, and anxiety makes the problem worse.

The SpeechEasy works because, for some reason, people stutter less when they talk in groups, such as when saying the Pledge of Allegiance in class. The echo in the ear tricks the brain into thinking someone else is talking too, giving support.

Since it was introduced in late 2001, about 3,000 of the devices have been sold. Skotko has provided about 50 of those. It doesn't turn the stutter off like a switch, but she says it has helped about 75 percent of the people who try it.

She also has seen dozens of people who want the device and can't afford it. The cheapest model is about $4,000, and insurance doesn't cover it.

Sean was lucky, she said. Lots of parents bring their kids in, take a credit application home and never come back.

* * *

The device worked almost immediately. If Sean's friends hadn't known him before, they might not have known he had stuttered. He stopped jerking his head when he talked. Sentences that would have frustrated him before came out clear on the first try.

Sometimes, his mother said, he would pause after hearing himself speak and say, "That was pretty cool."

His popularity endured, partly because of his habit of bringing his dad's cookies to school for his friends. They called them Heaven Cookies. His was the house where all the kids hung out.

Sean grew so comfortable with himself that he didn't wear his stuttering device all the time, and he wasn't wearing it that day in February when he left for a friend's house on his skates.

He checked in with his mom on the walkie-talkie. "I closed the garage door," he said.

Martha was going to the store to buy a pillow case. Andy was in the shower. Sean's grandmother was coloring her hair.

There was nothing special or revealing about this moment. Sean was four houses from home when he fell.

* * *

In the days after, Martha wandered the house looking at the things he left.

She went into his bathroom and saw his stuttering device in its little box on the counter. She picked it up, thought about how hard they worked to get it, and how much it helped him and how it didn't matter anymore.

She took it into his bedroom and put it in a dresser drawer. And then she asked herself, what good is it going to do in a drawer?

So in the middle of a lot of things she did not understand, she did one thing that made sense. She called Janet Skotko.

* * *

What Martha wanted to do was not simple. The SpeechEasy device was molded for Sean, tinted to match his skin, programmed to work with his brain. He had given a name to the voice it created in his head: Sean II.

Giving it away would mean refitting and reprograming it at considerable expense. But Skotko wanted to help Martha and wanted to help at least one of the kids who had left her office disappointed.

She made a few more calls. The company that makes the device agreed to program and shape it for free. Skotko and an audiologist waived their fees.

She told the Andersons about a boy in Naples named Lazaro Arbos.

Lazaro.

Martha had a feeling about him as soon as she heard his name.

That was her father's name. She never met him. He fled Cuba in 1962 and died two months before she was born.

Lazaro is not an uncommon name in Cuba. It means God's help.

* * *

Gisela Andraca cleans houses. Reinaldo Arbos works construction. They live in Naples and have a son and a daughter.

Lazaro started stuttering at 6. He remembers his first-grade teacher, back in Cuba, yelling at him: "Talk right!" That didn't help. Nothing did.

They came here 2 1/2 years ago through a lottery for visas. Lazaro learned English quickly, but as he entered middle school his stuttering got worse, his mother said. He stutters in English and in Spanish, on almost every sentence.

He is a sweet kid who, at 13, is not shy about holding his mother's hand. He likes to skate. He loves to sing. He never stutters when he sings.

Lazaro's mom had seen the SpeechEasy device on television, too, on a local news show about another Naples boy who stuttered. She had watched the show on a borrowed TV and asked someone to translate.

Janet Skotko was interviewed on that television show. Lazaro's parents tracked her down and, in October, scraped together $300 and missed a day of work to take Lazaro to see her. Skotko recorded Lazaro stuttering 30 times in two minutes.

They told Skotko they would do anything to help their son, but their loan application was rejected.

Lazaro said he understood.

Five months passed. Lazaro's relatives saved their money. But they had pretty much given up when Martha Anderson called.

The two mothers spoke to each other in Spanish and cried together on the phone.

* * *

The two families finally met in April at the speech therapist's office.

When Lazaro walked in with his family, the two mothers fell into each others arms. Reinaldo wished he could speak to Andy, father to father, but his English failed him.

They went into the same room where Sean tried out his device the first time. The Andersons couldn't help thinking how much Lazaro looks like their son. Same dark hair, same dark eyes. Same cowlick.

Maybe it's because of the stuttering, but they see Sean in his expressions and his mannerisms, in the shy way he rolls his eyes when he's avoiding a question.

Lazaro's stutter is worse than Sean's. When he speaks, it almost looks like a seizure. His face twists and freezes, his arms flail and his words stick in his throat. Sometimes long seconds pass, and no matter how hard he wrestles with the sounds, they never form words.

When Martha watched him struggle like that, she had to turn her head so she wouldn't cry.

Janet Skotko put the device in Lazaro's ear. Everyone remembers what happened next.

She asked him his name.

"Lazaro."

It came out clear, like it should. Lazaro looked surprised. He broke into a grin.

"Lazaro Arbos."

Then the long sigh.

Andy thought: Just like my son.

When it was over, Lazaro walked over to Martha. As she tells it, he put one hand on each of her arms and looked straight into her eyes.

"Thank you very much."

After the appointment, the two families went to a restaurant together. When the waitress came, Lazaro looked at his mother and pointed to the menu.

Andy remembers thinking that they would have made Sean order for himself. He told Lazaro to give it a shot. But Lazaro shook his head; he had never done that before. Andy insisted.

So Lazaro looked at the waitress.

"Cheeseburger," he said.

"Ketchup.

"No lettuce, no tomato, no french fries."

* * *

Lazaro has more appointments and therapy ahead. He still stutters with the device; it takes practice to learn to work with it. He has named the voice inside his ear Mickey.

Andy drove to Tampa recently for another of Lazaro's appointments. He and Reinaldo stood shoulder to shoulder: two dads, two video cameras.

The Andersons want to bring Lazaro to the theme parks in Orlando and visit him at his home in Naples. They feel like their family has grown.

Because of the Andersons' gift to Lazaro, the company that makes the SpeechEasy device has decided to give one away every year to a needy kid. Martha Anderson will help select the child who receives it.

Sean has been dead three months, and his parents still don't know why he died. The death certificate says "no cause" and the medical examiner needs more time.

The hardest day came a couple of weeks ago. Martha didn't want to leave the house. Andy asked if they should visit Sean's grave, plant some flowers. But Martha didn't want to do that, either. She went into Sean's room, lay on his bed, listened to music he liked. She felt incomplete.

She didn't hear the phone ring, but later that day there was a message for her on the answering machine.

It was from a boy a lot like hers, wishing her a happy Mother's Day.

- Kelley Benham can be reached at 727 893-8848 or benham@sptimes.com

At a glance

For information on the SpeechEasy device, call 252 551-9042 or go to www.speecheasy.com Janet Skotko can be reached at (813) 228-8244 or www.thevoiceinstitute.com

[Last modified May 31, 2004, 11:33:55]


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