by Jane Sevier
During their first years, children develop more rapidly than at any other time, achieving the basic physical, cognitive, language, social and self-help skills crucial in life. Yet, although they make up 1 of about 700 live births in the United States, few studies have focused specifically on children with Down syndrome. Now, researchers at Vanderbilt’s Peabody College of education and human development are blazing new trails in language and learning programs designed to ensure children with Down syndrome have the brightest possible futures.
“Only in the last five years have people started being interested specifically in children with Down syndrome as opposed to being interested in kids with intellectual disabilities or with significant language impairment as a group that included Down syndrome,” said Peabody professor Ann Kaiser.
Kaiser is principal investigator for a new intensive language intervention for children with Down syndrome. “There are quite a few intervention studies of children with intellectual delays that don’t analyze the data for kids with Down syndrome separately from the rest of the kids. The studies that do seem to suggest that children with Down syndrome don’t progress at the rate you’d expect them to based on their cognitive ability and sometimes based on their language ability. They just have a different learning profile.”
The John Merck Fund supports the five-year study, Social Communication Intervention for Children with Down Syndrome, which focuses on children between 30 and 54 months old. The first large-scale, randomized-control trial of early communication intervention for children with Down syndrome, the project is designed to teach them to speak, increase their use of words and sign language when engaged with others, and sustain focus and social attention. The program also trains parents in a range of language-support strategies.
“It’s hard for these kids to process language in the context of interacting with people and objects,” Kaiser, Susan W. Gray Professor of Education and Human Development, says. “They are not that interested in objects. They love anything that’s person-engaged, but it’s really hard for them to pay attention to toys in a productive way and pay attention to people. “Because most children with Down syndrome begin talking later, are slow to acquire vocabulary, combine two words later than typical children, and have trouble developing syntax, it is critical to begin language intervention early and continue it throughout the preschool years.”
With researchers at the University of California–Los Angeles, Kaiser and her team are testing interventions that take into account the behavioral characteristics of children with Down syndrome. It’s the first study designed specifically for them that uses iPads.
“Research suggests that children with Down syndrome are strong visual processors and weak auditory processors of verbal information,” says Research Associate Courtney Wright, who directs the Peabody project. “A push to identify the behavioral characteristics associated with children with Down syndrome has really lent itself to more visual interventions like sign language, which is pretty common.
“We decided to use iPads because they have voice output and a visual component. That’s more accessible for a partner who may not know how to sign. Some young children have trouble getting out of the one-word level, building enough spoken vocabulary to then bridge to syntax, a big piece of the puzzle that’s hard for them. And intelligibility is a lifelong issue for them. That affects their peer relationships and work possibilities. We considered all those issues in designing our intervention.”
Children taking part in the study receive one-on-one, play-based language instruction at their schools and homes. The goal is for them to develop spoken language to improve their participation in society, at school, and in their communities. (For more information about the project, contact Courtney Wright, email@example.com, 615-322-8164).
Solutions for memory and language problems
Emerging research is already finding that standard practice for other students with intellectual disabilities may not work as well for children with Down syndrome. Professor of Special Education Paul Yoder, for example, recently completed U.S. Department of Education-funded studies using Milieu Communication Teaching (MCT) that indicate that children with Down syndrome require more intensive intervention than children with other intellectual disabilities. MCT involves arranging a preschool child’s natural environment to create a setting that encourages the child to speak.
“Short-term memory is a special problem for people with Down syndrome that’s probably more specific to the auditory domain,” Yoder says. “So, when you match children with other intellectual disabilities with children with Down syndrome for mental age, chronological age and IQ, you still get a deficit in short-term auditory memory.”
Students with Down syndrome also typically have more difficulty using the lips, tongue, teeth, and throat to produce a variety of speech sounds. This type of difficulty is called an oral motor deficit. The combination of short-term auditory memory and oral motor deficits results in children with Down syndrome having more difficulty learning to speak than other children with intellectual disabilities. But Yoder and his team found that providing children with Down syndrome five hours of MCT a week helped them increase their spoken vocabulary.
“Understanding how etiology affects response to treatment will ultimately allow us to personalize treatment planning,” Yoder says. “Given their special difficulties with spoken language, children with Down syndrome may simply require more treatment and thus benefit from high dose frequency to a greater extent than their peers.”
Another Yoder study, Efficacy of Broad Target Speech Recasts on Students with Down Syndrome, compared Broad Target Speech Recasts (BTSR) to the Easy Does It for Articulation (EDI) program in improving speech comprehensibility of elementary school students with Down syndrome. The project examined children ages 5–12 who had less than 75 percent speech comprehensibility. Students were randomized into one of two treatment groups.
EDI emphasizes guided practice in producing individually targeted speech sounds and assumes that difficulties in motor execution or motor planning cause the child’s speech difficulties.
BTSR focuses on speech recasts in which an adult repeats words a child is attempting to say, providing a model of correct pronunciation, pitch, stress and intonation. For example, if the child says, “Ah wa du,” the speech recast might be “I want juice.” The therapist uses speech recasts for any word the child attempts to say that is inaccurately produced and affords an appropriate recast.
“For kids with Down syndrome who begin therapy at just above the mean for imitation ability, our results indicate that speech recast works better than EDI,” Yoder said. He will publish findings from the study later this year.
In 2014, the National Institutes of Health revised its Down syndrome research plan, including greater emphasis on improving students’ learning and memory and helping them participate more in school. Advances in medical technology are enabling people with Down syndrome to live longer, healthier lives than ever before, also fueling the need to understand and support students with Down syndrome in school. A century ago, children with Down syndrome might survive to age 9, but now their average life expectancy is 55 years, with many living into their 60s and 70s.
Boosting phonological awareness
As a special education teacher working with elementary-school children with Down syndrome, Peabody Assistant Professor of Special Education Christopher Lemons found himself questioning a long-accepted theory that children with Down syndrome lack phonological awareness—ability to hear and manipulate sounds that make up words in spoken language—and therefore are unlikely to benefit from phonics-based reading interventions.
Through an Institute of Education Sciences (IES) Development and Innovation Grant, Lemons and his team set out to develop an early reading intervention for children with Down syndrome based on their related behavioral characteristics.
“If you think of Down syndrome—just as you think of many of the physical characteristics of kids with Down syndrome—there is evidence that certain behaviors are also connected with the extra copy of the gene just like the physical characteristics,” Lemons said. “A pattern of strengths and challenges in functioning across different domains. For example, research indicates that kids with Down syndrome may be better at visual processing and may have a decreased ability to continue working when things get hard.
“Phonological awareness is a prerequisite to learning to read in a phonics-based program. And it’s highly predictive in terms of identifying which typically developing kids will struggle with reading. What we proposed to do is take early phonological awareness and phonics-based reading instruction and see if we could adapt that instruction to make it better for kids with Down syndrome,” he said.
The team decided to teach children a small set of specific words that images could easily represent and that were already in their spoken vocabulary, like the word “dog.”
“‘Dog’ is a fun word,” Lemons said. “You can do little songs about a dog, and you can have a really great, exciting picture of a dog. We paired every letter with two decodable words, and we taught those words as sight words. ‘This is a picture of a dog. This is a picture of the word dog. So, what is this? It’s the word dog.’ The remaining portions of instruction then used these words as a starting point.”
Lesson plans were designed to allow instructors to increase or decrease the level of difficulty in response to each child’s progress.
Last year, Lemons and a colleague at the University of Texas at Austin carried out a pilot study to explore the same approach used in the reading project, taking Down syndrome behavioral characteristics and adapting math instruction for children with Down syndrome. They now have a grant proposal under review based on that pilot.
Lemons also oversees the Team William Project, which is funded through a Vanderbilt Kennedy Center Discovery Grant. Researchers are administering a test battery to children with Down syndrome and to children with intellectual disabilities without Down syndrome to better understand how specific the behavioral phenotype of children with Down syndrome actually is. A phenotype is the composite of observable characteristics or traits presumed to be associated with a condition or syndrome.
Parents or teachers who are interested in having a child participate should email Teresa Berryessa (firstname.lastname@example.org) for more information.
“One of the things we learned from the IES project was that this idea of the phenotype didn’t seem to be quite as consistent in the kids we were seeing as it is portrayed in the research,” Lemons said. “So, the purpose of the Team William Project is to determine what characteristics are more consistent across kids and which may be less consistent. We’re also trying to pin down which of those characteristics are most associated with outcomes in reading and math, thinking that those might be the best candidates for us to target with an intervention.”
Lemons’ findings will be published in an upcoming issue of Focus on Autism and Other Developmental Disabilities.