Originally Published in Prosper Magazine, September 2005 Issue
Esteban,
diagnosed with autism at age three, could not talk when he came to live with
the Villaseñors, and he exhibited the unruly behavior often associated
with autism. “Some people say he was like the Helen Keller story, literally
a lot of whacking and hitting people because he couldn’t articulate his
frustrations and his needs and his wants,” says Veronica, a clinical research
coordinator at University
of California, Davis’ M.I.N.D. Institute. She adds that despite working
with a speech therapist and having tongue-tie surgery to allow for further range
of movement and better articulation, Esteban’s language skills remain limited.
But the Villaseñors are hoping that a new trial at the institute using computer-based assistive technology tools will take advantage of Esteban’s innate love of electronics to make up for lost time. “If it works, it would bring a lot more language,” she adds. “That’s why we are excited about (his involvement in) this study.”
The M.I.N.D Institute was founded in 1997 by Chuck and Sarah Gardner who, with four other local families with neurodevelopmentally challenged children, raised the $6 million needed for start-up. The families shared a common frustration: the lack of a cohesive approach to studying and treating their children’s disorders.
Assistive technology refers to any device that will remove barriers that a person facing challenges such as autism, fragile X syndrome and other learning disorders must hurdle to reach his or her full potential. It can include something as simple as a picture of a toilet that a child can show an adult when he or she needs to use the bathroom, all the way through sophisticated software programs that can improve reading and writing skills. The latter is the focus of the study, which is being funded by a grant from the Coleman Foundation and the National Institute on Disability and Rehabilitation Research.
“We think there is a great need in California to really enhance the use of assistive technology for kids and adults with neurodevelopmental disorders,” says institute Medical Director Dr. Randi (pronounced Rondi) Hagerman, who understands firsthand the frustrations of having learning difficulties, having needed a reading tutor while she was in school.
Molding Young Minds
“Early intervention makes a huge difference in kids,” she says. “We are talking about molding the brain, and you can mold the brain in a lot of different positive directions. But, you’ve got to intervene in childhood, and the earlier the better.”
Easier said than done, Hagerman says, pointing to shrinking school budgets and the state’s shortsightedness in not providing more money for early intervention. With limited budgets, schools are taking a hard-line approach toward adopting unproven methods, says assistive technology team member Kerrie Lemons Chitwood.
“Schools will ask, ‘Is that proven with this group? Is that proven with this diagnosis? Is that proven with this age?’ And sometimes just having one good study to show, ‘Yes, these are the outcomes; this was a good controlled study,’ really makes a difference, versus things that remain anecdotal, which we have buckets and buckets and buckets of. You can understand where they’re coming from,” she says.
“The state spends much more money with institutions (than on intervention),” Hagerman says. “If you go into our jails, you’d be surprised at how many individuals are learning disabled. If you could put the money into this kind of intervention to make these kids (with neurodevelopmental disabilities) successful, they’re not going to turn to drugs and bad behavior. If you can build their self-image, build their success, this is all interrelated.”
The five-year trial is one of the largest of its type. The study team, and families such as the Villaseñors, are hopeful it will bring increased comprehension and communication into the lives of the participants: kids with autism, fragile X syndrome and chromosomal abnormalities such as Down syndrome, and ultimately, others with neurodevelopmental disorders — so named because neurological problems with the brain cause developmental delays. From a research perspective, the goal is to accumulate hard data about the effectiveness of assistive technology that will spur further interest and funding.
The study will test the effectiveness of two software programs, Write:OutLoud and Co:Writer, from Don Johnston Inc. of Volo, Ill., which has been providing learning intervention resources for 25 years.
“Write:OutLoud is a simplified word-processing program with speech feedback that allows students, once they type, to hear their sentences aloud,” explains Jennifer Bujak, Don Johnston marketing communications specialist. Hearing their work read aloud has been proven successful in helping students improve their writing, she says.
Co:Writer is a word prediction program that integrates with Write:OutLoud to suggest the next word in a sentence based on what has already been typed, or a phonetic equivalent. It is particularly beneficial for students with physical disabilities because it cuts down on the number of keystrokes required, Bujak says.
“We really feel that this software will be able to enhance written-language expression for many individuals with neurodevelopmental disorders,” Hagerman says. “They often do not do well with written-language expression because of their visual-motor coordination problems, but they often do very, very well on computers. They enjoy utilizing them, and so getting information translated from the brain onto paper is usually easiest via a computer.
“We think that this methodology will not only enhance their academic abilities and written language in academics, but could also be woven into some vocational utility in the future, as they move into adulthood.”
Hagerman and her team of assistive technology experts — occupational therapist Laura Greiss-Hess, speech and language pathologist Kerrie Lemons Chitwood and child development specialist Susan Harris — will closely monitor each year’s 20 participants (who must be able to read and write at a first-grade or higher level), as they use the programs to do schoolwork at the institute, in the classroom and at home.
Standardized assessment tests will be given at six and 12 months to measure progress; after students complete their year, they will be followed throughout the remainder of the study. “The families are wonderful to work with, and the kids are great,” Hagerman says. “They have great strengths and great sense of humor, wonderful personalities.”
The project’s principal investigator, Cathy Bodine, Ph.D., director of Assistive Technology Partners in the Department of Physical Medicine and Rehabilitation at the University of Colorado’s Health Sciences Center in Denver, will assist in the assessment of the results. The $250,000 trial is funded from a $5.25 million grant awarded to Bodine in November 2004.
What if the study works?
“We want to get the word out so that we can make sure these tools are provided to these children,” Bodine says. “Generally, they do not receive the level of assistive technology supports they could receive. Our hope is that, if we can demonstrate effectiveness, it might influence other schools and other people who make these decisions to go ahead and try that.”
Help may be at hand in California. State Senate Pro Tempore Don Peralta (D-9th District) and Assembly Speaker Fabian Nuñez (D-46th District) have introduced SCR 51, which would establish a 16-member Legislative blue-ribbon commission to study issues related to autism — the most frequently diagnosed neurodevelopmental disorder, affecting one in 166 children — and seek more funding and technical assistance for research and treatment.
Right now, the Villaseñors aren’t looking for an explanation or a cure for Esteban’s autism. They are more concerned with his happiness, his future and getting all the help they can for him.
“If I can help him become as independent as possible, and increase his language and comprehension, the sky’s the limit,” Veronica says. “I could care less if he’s not a whiz in math or other academics. To me, if the language and comprehension are there, I think there’s going to be an improvement in the quality of his life.”
M.I.N.D.ful Learning on Trial
New Software Could Be the Key
By Georgette Jeppesen
When their nephew’s parents died unexpectedly within months of each other in 2000, Veronica Villaseñor and her parole officer husband David became parents to seven-year-old Esteban Marchant. Esteban,
diagnosed with autism at age three, could not talk when he came to live with
the Villaseñors, and he exhibited the unruly behavior often associated
with autism. “Some people say he was like the Helen Keller story, literally
a lot of whacking and hitting people because he couldn’t articulate his
frustrations and his needs and his wants,” says Veronica, a clinical research
coordinator at University
of California, Davis’ M.I.N.D. Institute. She adds that despite working
with a speech therapist and having tongue-tie surgery to allow for further range
of movement and better articulation, Esteban’s language skills remain limited. But the Villaseñors are hoping that a new trial at the institute using computer-based assistive technology tools will take advantage of Esteban’s innate love of electronics to make up for lost time. “If it works, it would bring a lot more language,” she adds. “That’s why we are excited about (his involvement in) this study.”
The M.I.N.D Institute was founded in 1997 by Chuck and Sarah Gardner who, with four other local families with neurodevelopmentally challenged children, raised the $6 million needed for start-up. The families shared a common frustration: the lack of a cohesive approach to studying and treating their children’s disorders.
Assistive technology refers to any device that will remove barriers that a person facing challenges such as autism, fragile X syndrome and other learning disorders must hurdle to reach his or her full potential. It can include something as simple as a picture of a toilet that a child can show an adult when he or she needs to use the bathroom, all the way through sophisticated software programs that can improve reading and writing skills. The latter is the focus of the study, which is being funded by a grant from the Coleman Foundation and the National Institute on Disability and Rehabilitation Research.
“We think there is a great need in California to really enhance the use of assistive technology for kids and adults with neurodevelopmental disorders,” says institute Medical Director Dr. Randi (pronounced Rondi) Hagerman, who understands firsthand the frustrations of having learning difficulties, having needed a reading tutor while she was in school.
Molding Young Minds
“Early intervention makes a huge difference in kids,” she says. “We are talking about molding the brain, and you can mold the brain in a lot of different positive directions. But, you’ve got to intervene in childhood, and the earlier the better.”
Easier said than done, Hagerman says, pointing to shrinking school budgets and the state’s shortsightedness in not providing more money for early intervention. With limited budgets, schools are taking a hard-line approach toward adopting unproven methods, says assistive technology team member Kerrie Lemons Chitwood.
“Schools will ask, ‘Is that proven with this group? Is that proven with this diagnosis? Is that proven with this age?’ And sometimes just having one good study to show, ‘Yes, these are the outcomes; this was a good controlled study,’ really makes a difference, versus things that remain anecdotal, which we have buckets and buckets and buckets of. You can understand where they’re coming from,” she says.
“The state spends much more money with institutions (than on intervention),” Hagerman says. “If you go into our jails, you’d be surprised at how many individuals are learning disabled. If you could put the money into this kind of intervention to make these kids (with neurodevelopmental disabilities) successful, they’re not going to turn to drugs and bad behavior. If you can build their self-image, build their success, this is all interrelated.”
The five-year trial is one of the largest of its type. The study team, and families such as the Villaseñors, are hopeful it will bring increased comprehension and communication into the lives of the participants: kids with autism, fragile X syndrome and chromosomal abnormalities such as Down syndrome, and ultimately, others with neurodevelopmental disorders — so named because neurological problems with the brain cause developmental delays. From a research perspective, the goal is to accumulate hard data about the effectiveness of assistive technology that will spur further interest and funding.
The study will test the effectiveness of two software programs, Write:OutLoud and Co:Writer, from Don Johnston Inc. of Volo, Ill., which has been providing learning intervention resources for 25 years.
“Write:OutLoud is a simplified word-processing program with speech feedback that allows students, once they type, to hear their sentences aloud,” explains Jennifer Bujak, Don Johnston marketing communications specialist. Hearing their work read aloud has been proven successful in helping students improve their writing, she says.
Co:Writer is a word prediction program that integrates with Write:OutLoud to suggest the next word in a sentence based on what has already been typed, or a phonetic equivalent. It is particularly beneficial for students with physical disabilities because it cuts down on the number of keystrokes required, Bujak says.
“We really feel that this software will be able to enhance written-language expression for many individuals with neurodevelopmental disorders,” Hagerman says. “They often do not do well with written-language expression because of their visual-motor coordination problems, but they often do very, very well on computers. They enjoy utilizing them, and so getting information translated from the brain onto paper is usually easiest via a computer.
“We think that this methodology will not only enhance their academic abilities and written language in academics, but could also be woven into some vocational utility in the future, as they move into adulthood.”
Hagerman and her team of assistive technology experts — occupational therapist Laura Greiss-Hess, speech and language pathologist Kerrie Lemons Chitwood and child development specialist Susan Harris — will closely monitor each year’s 20 participants (who must be able to read and write at a first-grade or higher level), as they use the programs to do schoolwork at the institute, in the classroom and at home.
Standardized assessment tests will be given at six and 12 months to measure progress; after students complete their year, they will be followed throughout the remainder of the study. “The families are wonderful to work with, and the kids are great,” Hagerman says. “They have great strengths and great sense of humor, wonderful personalities.”
The project’s principal investigator, Cathy Bodine, Ph.D., director of Assistive Technology Partners in the Department of Physical Medicine and Rehabilitation at the University of Colorado’s Health Sciences Center in Denver, will assist in the assessment of the results. The $250,000 trial is funded from a $5.25 million grant awarded to Bodine in November 2004.
What if the study works?
“We want to get the word out so that we can make sure these tools are provided to these children,” Bodine says. “Generally, they do not receive the level of assistive technology supports they could receive. Our hope is that, if we can demonstrate effectiveness, it might influence other schools and other people who make these decisions to go ahead and try that.”
Help may be at hand in California. State Senate Pro Tempore Don Peralta (D-9th District) and Assembly Speaker Fabian Nuñez (D-46th District) have introduced SCR 51, which would establish a 16-member Legislative blue-ribbon commission to study issues related to autism — the most frequently diagnosed neurodevelopmental disorder, affecting one in 166 children — and seek more funding and technical assistance for research and treatment.
Right now, the Villaseñors aren’t looking for an explanation or a cure for Esteban’s autism. They are more concerned with his happiness, his future and getting all the help they can for him.
“If I can help him become as independent as possible, and increase his language and comprehension, the sky’s the limit,” Veronica says. “I could care less if he’s not a whiz in math or other academics. To me, if the language and comprehension are there, I think there’s going to be an improvement in the quality of his life.”
