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Nathan Trainor, a 23-year-old from Waverly, uses a portable keyboard and the help of a facilitator, Michelle Schipper, to express his feelings. Trainor's shirt says "Not being able to speak is not the same as not having anything to say."
KAYLA Porter / Courier Staff Writer
KAYLA Porter / Courier Staff Writer
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Awakening the silence
By KAYLA PORTER, Courier Staff Writer
WATERLOO --- Nathan Trainor lived in silence for 22 years.
Born with Joubert Syndrome, a rare genetic disorder, Trainor was unable to do what many take for granted -- speak. Years of countless therapies were unable to give Trainor a voice, until facilitated communication (FC) opened a door for him in 2006.
FC is a controversial method that requires an aide to provide physical support to non-speaking individuals as they type their thoughts on a keyboard or point to letters on a simple board. Some doubt FC's legitamacy because it can be hard to tell who is actually doing the communicating.
This alternative method of augmentative communication (supplementing natural speech) has been an effective form of expression for some individuals with autism and other developmental disabilities, according to the Facilitated Communication Institute at Syracuse University in New York.
The FCI was founded by Dr. Douglas Biklen. Biklen brought FC to the U.S. in the early '90s after learning it from its developer, Australian educator Rosemary Crossley.
"Great tears of joy FC is to me," Trainor, a 23-year-old Wartburg student typed as Michelle Schipper, his aide, provided light support at his wrist.
Due to his disability, Trainor lacks control of his fine motor skills. After he selects a key, Schipper gently pulls his hand back so Trainor can move to the next letter.
"Since we started, he requires touch less and less," Schipper said.
Trainor has only been writing a year, but already has aspirations to pen a book and screenplay about his life. A self-taught reader, Trainor exudes intelligence when his fingers hit the portable keyboard. His progress spites skeptics, who labeled a 3-year-old Trainor as "mentally retarded."
A whole new world
Those close to Trainor say they knew even though he wasn't able to speak, he had a lot to say.
"I actually heard about FC in the early '90s and I asked physicians about it, but they didn't think it would work with Nathan," said Jean Trainor, Nathan's mother. "They felt he had enough physical ability to type for himself, at that point I didn't pursue it any further."
It wasn't until Jean met a doctor from the FCI years later that the Trainors reconsidered FC. After attending a workshop in Chicago, Jean said "the breakthrough came."
Schipper, who signed on as Trainor's aide, had a feeling FC was the start of something big.
"I told Nate someday he'd be able to tell the whole world what he was thinking," Schipper said.
That day changed Trainor's life. His first written sentence was "Important talking is what I need to say what I want."
"I don't know that there are words to describe it, it was like a miracle happening right before my eyes," Jean said. "I always knew Nathan was intelligent. It was like, we need to be able to pursue this."
After training, Schipper began helping Trainor in his quest to communicate with the world. Her job includes avoiding anticipation of what Trainor's typing, providing positive feedback and asking clarifying questions.
What started with holding his typing finger as he pointed to keys on his portable laptop eventually became holding his wrist. Now Schipper provides a slight touch to his arm or shoulder, which helps Trainor be aware of his body and surroundings.
But FC isn't always easy for either party.
"Because facilitated communication is so strenuous not only physically but mentally, he requires a body break every 20 to 30 minutes," Schipper said. "and the level of physical support gets stronger depending on his emotion."
Though FC may be difficult, the duo wouldn't have it any other way.
"FC really changed my life," Trainor wrote.
Speaking out
Critics of FC believe the facilitators are consciously or subconsciously, the real communicators.
In fact, the American Psychological Association is just one of the many groups that don't support FC as a legitimate form of augmentative communication. The APA "adopts the position that facilitated communication is a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy" according to the Council Policy Manual.
The American Academy of Pediatrics agrees, claiming there is "good scientific data showing it (FC) to be ineffective." In addition, FC can cause more harm than good if unsubstantiated allegations of abuse occur, according to the AAP's Committee on Children with Disabilities policy statement.
After hearing some of the associations' allegations, Trainor methodically typed a response -- "they are jerks."
"I think that they are being hyper-careful and over-cautious," said Dr. Cliff Highnam, professor of speech pathology and department head of communication sciences and disorders at the University of Northern Iowa, "but they're right to be suspicious about some of what happens. It's all about training and how much you know. You can actually believe that the person is communicating when in fact you're the one that's influencing it and in control."
Although most facilitators like to believe they'd know if they were controlling an individual's communication, Highnam said "it's just not true, they can't be that objective about themselves."
Speech and language pathologist Matthew Dunn of Talk to Me Technologies in Cedar Falls said he advocates each individual's right to communicate but has mixed feelings on FC.
"It's really, really controversial just because studies indicate there's really no way this can be proven to be an effective method of communication," Dunn said. "I know personally I've seen people use it effectively, although I think people hop on the bandwagon too. There have been studies from the American Speech-Language-Hearing Association that prove it doesn't work for everyone."
Beating the odds
UNI professor of special education Dr. Christopher Kliewer studied at the FCI and has worked with Jamie Burke, a "severely autistic" 19-year-old from Syracuse. Burke began using FC at an early age and now speaks on his own.
Kliewer said that Burke's success story, which has been highlighted in "People" magazine and on CNN, proves critics wrong.
"Here was this idea, this approach that seemed to open up language to both children and adults, so right there you get all these experts in autism riled up," Kliewer said. "You go to the DSM-IV and you see autism is lack of imagination, mental retardation, this and that, and all of a sudden it was challenged."
Until Burke began using FC, he couldn't speak. After using a handheld keyboard that vocalized his writings, Burke began imitating the voices. Eight months later, he completely stopped using the voice option. He can now read the words he types out loud and only needs light touches on the shoulder.
"We have all these folks who are typing without physical support who required it," Kliewer said. "The detractors aren't taking it into account. It's very frustrating because it seems like they'd have to, but they're simply dismissing it."
Michelle Schipper said Trainor seems to be following in Burke's footsteps.
"He's starting to recognize how to find his voice," Schipper said. "It's happened with people in the FC world and I think it will happen for Nate, he's requesting to go to speech therapy now."
Trainor makes it clear he believes all non-speakers should be given the opportunity to speak through FC.
"I want to set them free with people like Michelle," Trainor said.
Contact Kayla Porter at (319) 291-1482 or kayla.porter@wcfcourier.com.
Born with Joubert Syndrome, a rare genetic disorder, Trainor was unable to do what many take for granted -- speak. Years of countless therapies were unable to give Trainor a voice, until facilitated communication (FC) opened a door for him in 2006.
FC is a controversial method that requires an aide to provide physical support to non-speaking individuals as they type their thoughts on a keyboard or point to letters on a simple board. Some doubt FC's legitamacy because it can be hard to tell who is actually doing the communicating.
This alternative method of augmentative communication (supplementing natural speech) has been an effective form of expression for some individuals with autism and other developmental disabilities, according to the Facilitated Communication Institute at Syracuse University in New York.
The FCI was founded by Dr. Douglas Biklen. Biklen brought FC to the U.S. in the early '90s after learning it from its developer, Australian educator Rosemary Crossley.
"Great tears of joy FC is to me," Trainor, a 23-year-old Wartburg student typed as Michelle Schipper, his aide, provided light support at his wrist.
Due to his disability, Trainor lacks control of his fine motor skills. After he selects a key, Schipper gently pulls his hand back so Trainor can move to the next letter.
"Since we started, he requires touch less and less," Schipper said.
Trainor has only been writing a year, but already has aspirations to pen a book and screenplay about his life. A self-taught reader, Trainor exudes intelligence when his fingers hit the portable keyboard. His progress spites skeptics, who labeled a 3-year-old Trainor as "mentally retarded."
A whole new world
Those close to Trainor say they knew even though he wasn't able to speak, he had a lot to say.
"I actually heard about FC in the early '90s and I asked physicians about it, but they didn't think it would work with Nathan," said Jean Trainor, Nathan's mother. "They felt he had enough physical ability to type for himself, at that point I didn't pursue it any further."
It wasn't until Jean met a doctor from the FCI years later that the Trainors reconsidered FC. After attending a workshop in Chicago, Jean said "the breakthrough came."
Schipper, who signed on as Trainor's aide, had a feeling FC was the start of something big.
"I told Nate someday he'd be able to tell the whole world what he was thinking," Schipper said.
That day changed Trainor's life. His first written sentence was "Important talking is what I need to say what I want."
"I don't know that there are words to describe it, it was like a miracle happening right before my eyes," Jean said. "I always knew Nathan was intelligent. It was like, we need to be able to pursue this."
After training, Schipper began helping Trainor in his quest to communicate with the world. Her job includes avoiding anticipation of what Trainor's typing, providing positive feedback and asking clarifying questions.
What started with holding his typing finger as he pointed to keys on his portable laptop eventually became holding his wrist. Now Schipper provides a slight touch to his arm or shoulder, which helps Trainor be aware of his body and surroundings.
But FC isn't always easy for either party.
"Because facilitated communication is so strenuous not only physically but mentally, he requires a body break every 20 to 30 minutes," Schipper said. "and the level of physical support gets stronger depending on his emotion."
Though FC may be difficult, the duo wouldn't have it any other way.
"FC really changed my life," Trainor wrote.
Speaking out
Critics of FC believe the facilitators are consciously or subconsciously, the real communicators.
In fact, the American Psychological Association is just one of the many groups that don't support FC as a legitimate form of augmentative communication. The APA "adopts the position that facilitated communication is a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy" according to the Council Policy Manual.
The American Academy of Pediatrics agrees, claiming there is "good scientific data showing it (FC) to be ineffective." In addition, FC can cause more harm than good if unsubstantiated allegations of abuse occur, according to the AAP's Committee on Children with Disabilities policy statement.
After hearing some of the associations' allegations, Trainor methodically typed a response -- "they are jerks."
"I think that they are being hyper-careful and over-cautious," said Dr. Cliff Highnam, professor of speech pathology and department head of communication sciences and disorders at the University of Northern Iowa, "but they're right to be suspicious about some of what happens. It's all about training and how much you know. You can actually believe that the person is communicating when in fact you're the one that's influencing it and in control."
Although most facilitators like to believe they'd know if they were controlling an individual's communication, Highnam said "it's just not true, they can't be that objective about themselves."
Speech and language pathologist Matthew Dunn of Talk to Me Technologies in Cedar Falls said he advocates each individual's right to communicate but has mixed feelings on FC.
"It's really, really controversial just because studies indicate there's really no way this can be proven to be an effective method of communication," Dunn said. "I know personally I've seen people use it effectively, although I think people hop on the bandwagon too. There have been studies from the American Speech-Language-Hearing Association that prove it doesn't work for everyone."
Beating the odds
UNI professor of special education Dr. Christopher Kliewer studied at the FCI and has worked with Jamie Burke, a "severely autistic" 19-year-old from Syracuse. Burke began using FC at an early age and now speaks on his own.
Kliewer said that Burke's success story, which has been highlighted in "People" magazine and on CNN, proves critics wrong.
"Here was this idea, this approach that seemed to open up language to both children and adults, so right there you get all these experts in autism riled up," Kliewer said. "You go to the DSM-IV and you see autism is lack of imagination, mental retardation, this and that, and all of a sudden it was challenged."
Until Burke began using FC, he couldn't speak. After using a handheld keyboard that vocalized his writings, Burke began imitating the voices. Eight months later, he completely stopped using the voice option. He can now read the words he types out loud and only needs light touches on the shoulder.
"We have all these folks who are typing without physical support who required it," Kliewer said. "The detractors aren't taking it into account. It's very frustrating because it seems like they'd have to, but they're simply dismissing it."
Michelle Schipper said Trainor seems to be following in Burke's footsteps.
"He's starting to recognize how to find his voice," Schipper said. "It's happened with people in the FC world and I think it will happen for Nate, he's requesting to go to speech therapy now."
Trainor makes it clear he believes all non-speakers should be given the opportunity to speak through FC.
"I want to set them free with people like Michelle," Trainor said.
Contact Kayla Porter at (319) 291-1482 or kayla.porter@wcfcourier.com.
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cbrandl wrote on Aug 15, 2007 8:45 AM:
" I am thrilled to hear how well Nathan is doing, having met him and his Mom at the FC workshop in Illinois. I am a retired teacher who has used FC with many, many young people since first learning about it back in 1992. How sad it is that so few individuals now have access to this method of communication because of all the controversy. Thank you so much for telling Nathan's story. And to Nathan: keep up the great work! "
ggilligham wrote on Aug 15, 2007 12:30 PM:
" My appreciation goes out to reporter Kayla Porter and the decision makers at The Courier for having the guts to share this positive story with the world. I have been involved with the use of facilitated communication since the early nineties and know that the conversations I have with people are coming from them. I am saddened by those, who have never the expereince of not being able to say what they want they want to say, refusing to allow people access to fc based on very limited understanding and knowledge. They don't know what they are missing. It's so good to know that Nathan is now able to share who he is with us. I hope that this story may open the doors for many others to join him. "
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tate63 wrote on Aug 14, 2007 2:05 PM: