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Implants, early therapy bring sound and speech to profoundly deaf kids

September 2, 2014

Teddy Linz was being interviewed two weeks ago by a teacher, a few days before preschool graduation. Call it an exit interview.

"How old are you?" asked Sherri Fickenscher.

"Six," Teddy said. "Siiiiix," he repeated, slumping his shoulders, slowing his voice.

"I'm soooo ooold," he continued, and fell from his chair pretending to be dead.

What is remarkable about this moment is that Teddy is profoundly deaf, meaning that he was born unable to hear anything.

He has been taught to listen and speak so well that he will start mainstream kindergarten at the private Haverford School next month. And he has learned - on his own, just by being tuned in to a world of sound - to mimic how he believes old people speak.

"He does everything his brothers do," said his mother, Caroline Linz. "It's just taken a lot of work."

Teddy was one of 16 deaf children who graduated from preschool this month at the Clarke Schools for Hearing and Speech in Bryn Mawr and Philadelphia. All 16 speak and listen well enough to begin mainstream kindergarten.

Rather than teach themselves and their children sign language, these parents chose the path of spoken language, many opting for surgical implants and intense speech therapy as early as a year old.

"We now expect children who are born deaf, identified, and fit with amplification early, and who receive quality early intervention, to gain the listening and language skills equal to their hearing peers," said Fickenscher, an education support specialist.

"There's not a day that goes by that I don't shake my head and say this is crazy," said Keith Brown of Philadelphia, father of Alyssa, 4, who attended graduation but still has one more year at Clarke. "She shouldn't be talking. She shouldn't be listening. But she is."

At the graduation ceremonies, each student accepted a certificate - pausing for pictures, beaming - and then crossed a plastic or wooden bridge, symbolic of their transition from intensive therapy to mainstream.

"A number of things have lined up in recent years to make this progress possible," said Judy Sexton, Clarke's director. Primarily two: all American children are now given hearing tests at birth. About 2.5 per 1,000 have significant loss; 1 in 1,000 cannot hear a sound.

In addition, cochlear implants - which bypass the outer ear and send sound as electronic signals directly to the auditory nerve and the brain - are being placed in babies as early as 12 months, followed by intense therapy.

Most Clarke parents, when told their child was deaf, had never heard of cochlear implants.

Parents said they were terrified at the prospect of implant surgery on their babies. A few said visiting Clarke, seeing what was possible, convinced them.

Clarke, which opened in Bryn Mawr in 2001 and in Philadelphia in 2011, has roots in Massachusetts dating back a century. Its focus is on immersion in spoken language. Sign language is not taught.

Every child has one-on-one daily speech and listening therapy. Classrooms are acoustically designed with carpeting and cork walls and ceilings.

Teachers wear microphones, and their speech is transmitted via FM signal to a child's hearing aids or implants, and also broadcast on speakers in each classroom. "We believe every decibel counts," Fickenscher said.

Clarke parents have made many trips to Harrisburg, educating legislators. Clarke now receives state funding at its two Pennsylvania schools for 24 students, ages 3 through 6. The school has 33 students, with room for 40. It also receives scholarships and grants to help with funding.

Clarke students come from Philadelphia-area counties on both sides of the Delaware. They typically come to Clarke when parents feel they want or need more than their county services provide.

In Pennsylvania, county agencies known as intermediate units provide services to children with special needs. Damian Johnston, head of the Montgomery County unit, said about 50 children with hearing loss get services in her county, 85 percent of them in their neighborhoods pre-schools or at home. There is also a classroom for those who need intensive services.

Johnston said their students also enter mainstream kindergartens. "Things that were not possible are now incredibly possible," she said. "It's an amazing day for children with hearing loss."

When a parent prefers Clarke, the county unit must approve the child for one of the 24 state-funded slots. Counties often agree but not always. When Delaware County thought it could provide services for Teddy, his parents appealed and won.

Lauren LaScala, whose son Cooper has one more year, comes to Clarke from Logan Township in Gloucester County. She convinced her district that Cooper needed Clarke's expertise.

Two Clarke parents could not win their fight and paid out of pocket. Full tuition is $35,000.

"It was a huge expense and a huge sacrifice on our family," the mother said. "But you do what you have to for your children."

Was it worth it?

"Absolutely," she said.

What these children have done - forsaking sign language in favor of the spoken language of their parents and siblings - is controversial in the deaf community.

Neil McDevitt, executive director of the Deaf Hearing Communications Center in Swarthmore, said parents who sign with deaf children "enjoy richer, fuller conversations" and that "the depth and richness of American Sign Language adds a level of honesty and color that spoken English simply cannot."

He said Clarke parents and doctors "chose to 'fix' " what they perceive is a loss rather than to embrace the full human being in their presence.

"Essentially an entire generation of deaf children [is] expected to speak and hear at the expense of intellectual and emotional development."

McDevitt acknowledged that what Clarke graduates had accomplished was "impressive from any perspective."

But think about what they had missed , he said.

"Rather than learning how their great-grandmother emigrated from Scotland," he added, "they're learning to identify the word grandma."

Clarke parents have heard it before.

"I strongly disagree," said Teddy's mother. "Teddy fully knows that his great-grandmother was born in Wales and emigrated here, and she was the one who told him. And if he did not have cochlear implants, he would never have known that because she does not sign."

"Also, if he chooses not to wear implants and to sign when he is older and can make his own choices, then we will happily support him."

Many tears were shed by parents at graduation.

"We're sad to go, but we're happy she's progressed enough to go," said Jessica Kennish, mother of Natalie, 5, who will attend John Hancock School in Philadelphia.

Parents in Bryn Mawr made a pact. "Our job to make sure these kids stay friends," said Tara Pavese, of East Norriton, mother of Giovanni, 6. "They're going to need each other in life."

After the ceremony, Gio and Teddy hit the playground. Fickenscher recounted this exchange:

"Let's play superheroes," Gio said.

"I want to be Wonder Woman," Teddy replied.

"You can't be Wonder Woman," Gio said. "You are a boy, and you have to be a boy super hero, because you are a boy."

"No I don't," said Teddy. "I'm going to be Wonder Woman."

And he ran off.

"This is a conversation between two deaf children on a playground full of noise," Fickenscher said. "They are completely connected in a way that would not be possible without their technology and the training and education both they and their families received."

(Source: articles.philly.com)


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