How Teachers and Families Can Help Children with Down Syndrome Succeed
By Beth Harpaz
Professor Emily A. Jones (GC/Queens College, Psychology) was a graduate student at Stony Brook University in the late 1990s when she got to know a family whose baby had Down syndrome. That baby, Owen, changed the course of her career.
Editor of SUM
At the time, Jones was working in a preschool for children with autism. She and the preschool director, Kathleen Feeley, wondered if Owen might respond to the strategies they were using for autism. “Lo and behold, the interventions were not only incredibly effective for the children with autism, but for Owen as well,” Jones and Feeley wrote in their two-volume manual, Off to a Good Start: A Behaviorally Based Model for Teaching Children with Down Syndrome.
Jones and Feeley created a program specifically for children with Down syndrome. Off to a Good Start, designed for use by families and caregivers as well as trained professionals, draws on their 20 years of experience in the field. The books were published last year by Woodbine House, which specializes in material about disabilities for a general audience.
“The motivation was to get it to the general public,” Jones said in an interview. “We are not going to impact the lives of children with Down syndrome and their families if we don’t get it out there. The work needs to be out there for people who are not academics, who are in a regular old preschool any place in the country, not near a university or in a university setting. … That is the only way lives will change.”
Professionals already familiar with behavioral approaches to learning can jump right into the second volume, which provides detailed instructions on teaching everything from motor skills and communication to potty training, shoe-tying, letters, and numbers. The authors break each task down into small steps, with charts for tracking progress.
The first book is geared more toward families and non-expert caregivers. It offers a theoretical framework for the strategies laid out in volume two, along with tips and encouragement. There are stories about Owen and other real families, advice for getting services, and information about Down syndrome characteristics that may impact learning. For example, children with Down syndrome tend to have weak muscle tone and may resist activities like reaching for a toy. They’re also exceptionally social, and may smile or flirt with caregivers to avoid a challenging task.
The theory behind Off to a Good Start is called applied behavioral analysis. Simply put, ABA is a way of increasing and improving desired behaviors through consequences. At its core, though, ABA “doesn’t have anything to do with disability or lack thereof,” Jones said. She points out that it’s used in many realms, from personnel management (giving bonuses for productivity) to everyday parenting (praising a child for eating vegetables).
The authors felt it was important to cite evidence-based research for their approach — as they did in volume one — as a way to maintain scientific integrity. With science as the foundation, students entering fields like psychology and education need to consider the “human aspect” of their work: “A clinician with a high level of expertise still needs to be able to talk to a family and make what they’re doing with their child understandable, to make sure the family is informed.”
Jones adds that she and Feeley have “the utmost respect for the fact that people have different ideas about how to parent their children.” Experts, too, have “different ways of thinking about how learning takes place,” and some parents have found teachers reluctant to embrace Off to a Good Start. Jones says that’s understandable: “The amount of effort to try something new is daunting. I can’t imagine not knowing this as a teacher in a classroom or a parent and then all of a sudden having all this information laid at my feet. That’s one of the reasons we are also out there doing trainings and consulting work in the schools.”
Beth Harpaz is the editor of SUM. Follow her on Twitter at @literarydj.
Submitted on: FEB 18, 2020
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