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http://www.4hearingloss.com/archives/2005/12/deaf_mute_gets.html
The letter that arrived in Greg and Shelley Hubert's mailbox in March 1999 stated that the schoolgirl they had been sponsoring in Mexico was leaving the program. The child-care organization, Children Incorporated, asked whether the Huberts would sponsor a 3-year-old girl from Honduras.
"Josselin is a handicapped child," the letter stated, "a deaf mute."
Those eight words had a powerful impact on the Huberts.
Greg Hubert is the son of deaf parents. His and Shelley Hubert's first child was born deaf in 1997. The Naperville couple decided they would do more than sponsor Josselin Garcia. They would find help in Honduras for her.
Six years after that somewhat benign commitment, Josselin, 10, is marking her fourth anniversary in the Huberts' home, where she has lived since December 2001. Greg Hubert has left his job to become Josselin's full-time educational aide, and the Huberts said they have spent more than $85,000 taking care of Josselin. Their relationships with each other and their two children have suffered, at times significantly.
"There's no doubt you've got to be committed to something like this," said Greg Hubert, 52. He started laughing, which he does frequently.
At a time when children with Josselin's condition are being left behind, the Huberts grind toward an objective that some suggest is impossible. They want to teach the little girl to speak. Their odyssey shows the cost of living one's beliefs, but also provides a lesson about the value of serving.
"We're very thankful that she's come as far as she has," Greg Hubert said, "and thankful for those who have helped along the way and those who will continue helping."
Honduras, one of the poorest countries in the Western Hemisphere, lacks services and technology to help Josselin speak.
Passionate debate has been ongoing for years over whether teaching the deaf to speak is the best approach. Some experts say it is too traumatic for children, but many others believe the so-called "oral option" offers the most promise for a deaf person's intellectual potential and job prospects.
The Huberts are oral enthusiasts. In April 2001 they brought Josselin and her family to the Chicago area to fit her with hearing aids. But tests here revealed profound hearing loss that the devices would be unable to solve.
So the Huberts decided to set up and pay for a cochlear implant for Josselin. The small two-piece devices stimulate the auditory nerve through processing and transmitting speech digitally. Cochlear implants have brought a form of hearing to about 12,000 deaf children, including the Huberts' 8-year-old daughter, Nicole. They also have a 5-year-old son, Spencer.
But tests performed days before Josselin's surgery showed that she lacked a cochlea and auditory nerves. The implant would have been pointless.
They were "devastated by the news," Greg Hubert recalled. Josselin's parents, who remain in Honduras, "shared tremendous fear" about her life in her homeland, he added.
"This is a situation where you ask yourself, `Do you really believe in what you say?'" Greg Hubert said.
"Clearly we had been given an opportunity to help a child, and no one else was going to help her. What do you do in the face of that? We had no idea how big it was going to be, but we just had to try."
Added Shelley Hubert: "We're trying to remember why we did this--so a little girl will have a chance in this world."
The Huberts tried to enroll Josselin in at least five residential schools in Illinois and Missouri in 2002 that teach the profoundly deaf to speak. All rejected her.
"What's happened is if your child has fallen too far behind or your child doesn't benefit from the technology, they're no longer able to help your child," Greg Hubert said.
The result is that children like Josselin are being left behind while institutions focus increasingly on children helped by implants, he said.
Validating that contention is tricky. No one tracks how many deaf people lack the physiological features to benefit from cochlear implants.
"I don't think they're being shortchanged," said K. Todd Houston, executive director of the Washington-based Alexander Graham Bell Association for the Deaf and Hard of Hearing, the leading advocacy group for the oral option.
"But I do think that the [media] attention to cochlear implants has been sort of overwhelming."
Sister Roseanne Siebert, interim principal at the St. Joseph Institute for the Deaf in Chesterfield, Mo., where Greg Hubert's mother was educated 50 years ago, said the school could not help Josselin.
"Unfortunately, at this point, because of the way technology has impacted our program," Siebert said, the child who cannot be helped to speak by cochlear implants "is not a big focus for us anymore."
"It's a dilemma, and it's very hard," she said. "You want to take these kids and work with them and give them as much as you can. But there's a point where you have to say you're trying to do something that is impossible."
After the rejections, they enrolled Josselin in the Alexander Graham Bell Montessori School in Mt. Prospect, designed to mainstream deaf children. In about 2002, Greg Hubert quit his software consulting job and its six-figure salary, he said, to advocate full time for children like Josselin. His wife, who works at a software firm, is now the sole breadwinner.
Josselin progressed, but not fast enough. She is learning English and will take up Spanish, an arduous process made more stressful by the expiration of Josselin's student visa in 2009.
The deaf enrollment at the Montessori school dwindled, and the drives between Mt. Prospect and Naperville could keep Greg Hubert in the car four hours a day. He was run ragged and, in January, caught pneumonia. He and his wife underwent marriage counseling for two months. The Huberts worry that the time they devote to Josselin shortchanges their own children.
This fall, they enrolled Josselin at All Saints Catholic Academy in Naperville, and Greg Hubert became her full-time aide, attending 2nd-grade classes with her daily and helping with homework and activities. The commitment starts about 5:45 a.m. and ends after 9 p.m. most days.
"We do it, but it's a stretch," Greg Hubert said. "We hope that in sum total, the whole thing is a plus for our children."
Josselin's parents, who run a modest jewelry repair shop in Honduras, are unable to contribute to Josselin's care. In an e-mail interview, Richard and Flor de Maria Garcia said the Huberts "are our angels who God put in our lives. What they do for Josselin we think is too much. What they do for her, they do with happiness because they love her; because she is very special."
Greg Hubert said Josselin is a gift to his family.
"If one truly believes in social justice, service to others and caring for those who can least help themselves, then the positive impact of Josselin on our lives is huge," he said. "We don't just talk about `love your neighbor' on Sundays. Josselin is an everyday life example and lesson for our children, our family and all those we meet."
The letter that arrived in Greg and Shelley Hubert's mailbox in March 1999 stated that the schoolgirl they had been sponsoring in Mexico was leaving the program. The child-care organization, Children Incorporated, asked whether the Huberts would sponsor a 3-year-old girl from Honduras.
"Josselin is a handicapped child," the letter stated, "a deaf mute."
Those eight words had a powerful impact on the Huberts.
Greg Hubert is the son of deaf parents. His and Shelley Hubert's first child was born deaf in 1997. The Naperville couple decided they would do more than sponsor Josselin Garcia. They would find help in Honduras for her.
Six years after that somewhat benign commitment, Josselin, 10, is marking her fourth anniversary in the Huberts' home, where she has lived since December 2001. Greg Hubert has left his job to become Josselin's full-time educational aide, and the Huberts said they have spent more than $85,000 taking care of Josselin. Their relationships with each other and their two children have suffered, at times significantly.
"There's no doubt you've got to be committed to something like this," said Greg Hubert, 52. He started laughing, which he does frequently.
At a time when children with Josselin's condition are being left behind, the Huberts grind toward an objective that some suggest is impossible. They want to teach the little girl to speak. Their odyssey shows the cost of living one's beliefs, but also provides a lesson about the value of serving.
"We're very thankful that she's come as far as she has," Greg Hubert said, "and thankful for those who have helped along the way and those who will continue helping."
Honduras, one of the poorest countries in the Western Hemisphere, lacks services and technology to help Josselin speak.
Passionate debate has been ongoing for years over whether teaching the deaf to speak is the best approach. Some experts say it is too traumatic for children, but many others believe the so-called "oral option" offers the most promise for a deaf person's intellectual potential and job prospects.
The Huberts are oral enthusiasts. In April 2001 they brought Josselin and her family to the Chicago area to fit her with hearing aids. But tests here revealed profound hearing loss that the devices would be unable to solve.
So the Huberts decided to set up and pay for a cochlear implant for Josselin. The small two-piece devices stimulate the auditory nerve through processing and transmitting speech digitally. Cochlear implants have brought a form of hearing to about 12,000 deaf children, including the Huberts' 8-year-old daughter, Nicole. They also have a 5-year-old son, Spencer.
But tests performed days before Josselin's surgery showed that she lacked a cochlea and auditory nerves. The implant would have been pointless.
They were "devastated by the news," Greg Hubert recalled. Josselin's parents, who remain in Honduras, "shared tremendous fear" about her life in her homeland, he added.
"This is a situation where you ask yourself, `Do you really believe in what you say?'" Greg Hubert said.
"Clearly we had been given an opportunity to help a child, and no one else was going to help her. What do you do in the face of that? We had no idea how big it was going to be, but we just had to try."
Added Shelley Hubert: "We're trying to remember why we did this--so a little girl will have a chance in this world."
The Huberts tried to enroll Josselin in at least five residential schools in Illinois and Missouri in 2002 that teach the profoundly deaf to speak. All rejected her.
"What's happened is if your child has fallen too far behind or your child doesn't benefit from the technology, they're no longer able to help your child," Greg Hubert said.
The result is that children like Josselin are being left behind while institutions focus increasingly on children helped by implants, he said.
Validating that contention is tricky. No one tracks how many deaf people lack the physiological features to benefit from cochlear implants.
"I don't think they're being shortchanged," said K. Todd Houston, executive director of the Washington-based Alexander Graham Bell Association for the Deaf and Hard of Hearing, the leading advocacy group for the oral option.
"But I do think that the [media] attention to cochlear implants has been sort of overwhelming."
Sister Roseanne Siebert, interim principal at the St. Joseph Institute for the Deaf in Chesterfield, Mo., where Greg Hubert's mother was educated 50 years ago, said the school could not help Josselin.
"Unfortunately, at this point, because of the way technology has impacted our program," Siebert said, the child who cannot be helped to speak by cochlear implants "is not a big focus for us anymore."
"It's a dilemma, and it's very hard," she said. "You want to take these kids and work with them and give them as much as you can. But there's a point where you have to say you're trying to do something that is impossible."
After the rejections, they enrolled Josselin in the Alexander Graham Bell Montessori School in Mt. Prospect, designed to mainstream deaf children. In about 2002, Greg Hubert quit his software consulting job and its six-figure salary, he said, to advocate full time for children like Josselin. His wife, who works at a software firm, is now the sole breadwinner.
Josselin progressed, but not fast enough. She is learning English and will take up Spanish, an arduous process made more stressful by the expiration of Josselin's student visa in 2009.
The deaf enrollment at the Montessori school dwindled, and the drives between Mt. Prospect and Naperville could keep Greg Hubert in the car four hours a day. He was run ragged and, in January, caught pneumonia. He and his wife underwent marriage counseling for two months. The Huberts worry that the time they devote to Josselin shortchanges their own children.
This fall, they enrolled Josselin at All Saints Catholic Academy in Naperville, and Greg Hubert became her full-time aide, attending 2nd-grade classes with her daily and helping with homework and activities. The commitment starts about 5:45 a.m. and ends after 9 p.m. most days.
"We do it, but it's a stretch," Greg Hubert said. "We hope that in sum total, the whole thing is a plus for our children."
Josselin's parents, who run a modest jewelry repair shop in Honduras, are unable to contribute to Josselin's care. In an e-mail interview, Richard and Flor de Maria Garcia said the Huberts "are our angels who God put in our lives. What they do for Josselin we think is too much. What they do for her, they do with happiness because they love her; because she is very special."
Greg Hubert said Josselin is a gift to his family.
"If one truly believes in social justice, service to others and caring for those who can least help themselves, then the positive impact of Josselin on our lives is huge," he said. "We don't just talk about `love your neighbor' on Sundays. Josselin is an everyday life example and lesson for our children, our family and all those we meet."