How literacy can unlock a voice
The power of appropriate instruction
Nate is a five-year-old boy from Tyrone, Pennsylvania who was born with quadriplegic cerebral palsy. He uses a power wheelchair to get around with some assistance from others. He can say a few words, like “mom” and “dad,” but his speech is very limited. He has no problems seeing or hearing. Nate has a twin brother, and like many young twins, the boys love to play together.
One shocking difference between the twins exists in their likely literacy outcomes. More than 90 percent of people who have significant speech issues leave high school unable to read beyond a first-grade level.
According to Jessica Caron, Mark T. Greenberg Early Career Professor of Communication Sciences and Disorders at Penn State, these disparities in ability to read are not only tragic, but they are potentially avoidable. Caron works to develop and train others in evidence-based, adapted literacy instruction for children like Nate so they can develop the skills they need to lead full lives.
Literacy is a critical component of daily life for most Americans; it allows people to navigate the world, select products, communicate, and work. But for people with little or no speech, literacy is even more valuable. Through literacy, an individual has access to a full range of communication options and maximum freedom of expression. For Nate and others with significant speech issues, learning to read and write opens up much more of the world.
“Dr. Caron has changed my family’s lives through literacy instruction,” said Ashley Shultz, Nate’s mom. “We use her model for teaching in all instruction with Nate—not just in literacy. The technology has allowed us to teach Nate properly and see the depth of his potential.”
“Dr. Caron has changed my family’s lives through literacy instruction. We use her model for teaching in all instruction with Nate—not just in literacy. The technology has allowed us to teach Nate properly and see the depth of his potential.”
Author
Aaron
Wagner
What is needed
Caron and other researchers at Penn State, including Janice Light, Hintz Family Endowed Chair in Children’s Communicative Competence and professor of communication sciences and disorders, and David McNaughton, professor of education, have been working for years to develop the theoretical basis for instruction, the materials and technologies needed, and the research evidence to demonstrate that this instruction really works.
“Research in my department is based on the idea that many individuals who have significant speech issues could learn to read if they were provided the opportunity and the right evidence-based supports,” Caron continued. “Our results with Nate are validating that hypothesis.”
Despite the needs of children with severe speech and language disorders, special education teachers and speech pathologists rarely receive training in how to teach literacy to these children.
Jessica Caron works with Nate to build literacy skills. The device on the table in front of Nate tracks his eye gaze to produce his responses to her questions and prompts.
The tools that people with speech problems use to communicate are referred to as augmentative and alternative communication (AAC). The devices can be customized to the individual’s need.
This photograph was taken after Nate had worked with his AAC device for over a year. Early on, he had only a few letters on his screen as he learned to differentiate. Now, he has access to a full keyboard.
“This can be challenging or impossible for individuals like Nate who can’t use speech to communicate,” Caron continued. “Their challenges with speech often result in a lack of access to appropriate instruction, resulting in them never really learning how to read. In most cases, that is what happens to students who have the most severe speech and language disorders.”
Augmentative and alternative communication (AAC) is one of the most important tools used by individuals who have significant speech issues and their teachers. AAC can be any strategy to supplement speech, from pointing at pictures in a communication notebook to selecting symbols in a specialized app on an iPad.
Caron said, “We have the evidence that people who use AAC can learn to read when they are provided with appropriate instruction. One goal of my research and our work with Nate is to translate these research findings in ways that supports broader uptake – where we see teachers and speech-pathologists using these instructional techniques in schools with all students who learn like Nate.”
How to teach children like Nate
Nate was scheduled to start kindergarten in fall of 2020, but the COVID-19 pandemic disrupted those plans. Consequently, Nate was homeschooled by his mother and received literacy instruction from Caron and her graduate students. Instruction began in-person in early 2020, but since then most of his instruction was conducted online using Zoom.
Since Nate cannot respond verbally or point to things reliably, he uses a special computer that can register where he is focusing his eyes. When Nate looks at a specific portion of the computer screen for more than two seconds, the computer registers whatever he is looking at as his response. In this way, Nate can use his computer to spell, communicate, select activities, and much more. The eye gaze device is an example of AAC.
The right technological tools, however, are not enough to facilitate learning. Proper instruction is needed as well. So, rather than repeating letter- sounds using speech, Nate was first taught the letter-sounds by identifying the letters on his eye-gaze device from a small number of choices of letters. Then, he was asked to associate the letters and sounds by selecting the proper letters with his gaze. Eventually, with additional instruction in other key early-literacy skills, Nate began to read and spell.
Over the course of the school year, Nate progressed from not knowing any letter sounds to being able to read and spell many words and even communicate using his eye-gaze device. In the videos below, Jessica Caron explains how Nate and his teachers (graduate students at Penn State) use adapted learning activities and technology to build his literacy skills.
“Nate is starting to spell with his keyboard, and when he masters that, we will truly be able to hear his voice and what he has to say. Right now, he is dependent on icons and what an adult programs into his device, but once he can type for himself, it will be his thoughts we get to hear.”
Nate’s family has been delighted and amazed with the results of the instruction.
“I was surprised by how quickly Nate progressed,” said Nate’s mom. “It seemed to take forever for him to master the first two letters. Then, in no time, he was sound blending and decoding words himself. We would take videos and show friends and family who couldn’t believe that Nate was reading.”
For the Shultz family, the instruction quickly moved beyond literacy and into every aspect of his life.
“Dr. Caron and her team have given us such hope for Nate with his AAC device,” she continued. “He is starting to spell with his keyboard, and when he masters that, we will truly be able to hear his voice and what he has to say. Right now, he is dependent on icons and what an adult programs into his device, but once he can type for himself, it will be his thoughts we get to hear.”
Beyond Nate
The instructional research with Nate is funded by a grant that Caron and Meghan O’Brien of Boston Children’s Hospital received from the American Speech-Language-Hearing Foundation. The Researcher-Practitioner grant provided resources for the training of graduate students in speech-language pathology. It also supported the training of teachers and speech-pathologists working in schools with children who use AAC. So far, six graduate students in speech-language pathology have had the opportunity to work with and learn from Nate and his family.
Additionally, Caron and McNaughton have a grant from the Office of Special Education Programs to train the next generation of speech pathologists and special education teachers in best practices for working with children who use AAC and their families. Trainees of this grant take classes on using AAC—like how to program Nate’s computer—and the evidence behind the instruction.
AAC must be selected and adapted based on the needs of each individual, but the literacy methods used with Nate are broadly applicable for many students who use AAC. Last year, 12 graduate students funded by the grant with McNaughton supported the educational and communication advancements of 130 children who use AAC.
As these students graduate and become speech pathologists and special education teachers, they will take these skills, tools, and techniques, and employ them with other children who have similar needs.
Alyssa McGurrin, a current graduate student who has worked with Nate said, “I’ve learned so much from working with Nate and his family. Through experiences with him and other opportunities from being on the grant, I feel so much more prepared to work children who use AAC.”
“I’ve learned so much from working with Nate and his family. Through experiences with him and other opportunities from being on the grant, I feel so much more prepared to work children who use AAC.”
What the future holds
By the end of the school year, Nate was able to use his computer to compose simple sentences like, “I go nap,” and “I eat pap,” (meaning he wants to eat with his grandfather). A year prior, Nate was saying single words with his device and was not typing at all. With continued appropriate instruction, there is no telling how much independence and self-expression he will be capable of by the time he completes high school.
Caron and faculty and students in the Department of Communication Sciences and Disorders will continue working with and advocating for people with complex communication needs. By developing new tools and training speech pathologists, they are helping people unlock their potential to live richer, fuller lives.
“At Penn State we learned how to program Nate’s AAC device so that he is able to communicate his wants and needs and much more to us,” Shultz said. “The best part is, we have learned how to include him with his AAC device. We have family game-night and play board games. He can read books with me, and he can talk and tell jokes with his brother.
“We are forever grateful to Dr. Caron and the students for their work with Nate.”
Photo Credits
Top photo of Nate and 3 gallery images: Credit Ashley Nevling
Videos: Courtesy of Jessica Caron
Image of brain: Credit jolygon via Adobe Stock
Photo of Alyssa McGurrin: Credit Paul Hazi
Author
Aaron Wagner
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