Opening Doors for Kids with Down Syndrome

Opening Doors for Kids with Down Syndrome

INNERview with Dr. Kathleen Whitbread

Kathleen Whitbread, Ph.D. is an associate professor of education at the University of Saint Joseph (USJ) in West Hartford, CT, where she teaches graduate and undergraduate courses in special education. Before joining the faculty at USJ, Dr. Whitbread was an assistant professor of pediatrics and associate director of the University of Connecticut Center for Developmental Disabilities, where she directed a number of projects focused on increasing access to general education for students with significant disabilities. Dr. Whitbread’s research interests include early literacy instruction for children with intellectual disabilities and research-based methods for designing and delivering instruction in diverse classrooms. Dr. Whitbread has published articles about her research in Teaching Exceptional Children, The Journal of the Connecticut Association for Reading Research, The Journal of Inclusive Education, Topics in Early Childhood Special Education and Current Issues in Education. She is co-author, with Anne Treimanis, of the book IEP and Inclusion Tips for Parents and Teachers published by Attainment Company.

 

YVONNE PIERRE:  What initially drew you to working with children with special needs?

DR. KATHLEEN WHITBREAD:  I was in high school when Public Law 94-142 passed.  I remember the buzz it created—teachers clustered in little groups in the hallway between classes, talking about it. Until then, I had no idea that children with disabilities did not have a legal right to go to school. It made a deep impression on me—the injustice of that.  The next summer, I got a job as a counselor at a camp for kids with disabilities and by the end of the summer, I knew that I would be a special education teacher.

YVONNE:  What is “Open Book Open Doors” and what inspired you to launch it?

DR. WHITBREAD:  Open Books Open Doors is a project aimed at bridging the gap between what we know about literacy instruction for children with Down syndrome and what we do.  Through my experiences in public schools, I know that many children with Down syndrome are receiving inadequate or ineffective reading instruction. Many are relegated to functional sight word programs that significantly limit their literacy skills. Even though there is a solid body of evidence confirming that children with Down syndrome can learn to be competent readers, we are still following practices that are decades old.  I started Open Books Open Doors because I wanted to get current information out to both parents and professionals in a format that would raise expectations of children with Down syndrome and ultimately change how we approach reading instruction for this population of children. After reading a quote by Minor White, it occurred to me that perhaps pictures could tell the story better than words.  He said, “”At first glance a photograph can inform us. At second glance it can reach us.” Maybe people needed to see real children with Down syndrome reading and writing. I recruited an incredibly talented photojournalist, Mallury Patrick Pollard, to work with me on the project and we secured funding from the Connecticut Down Syndrome Congress and the University of Saint Joseph, where I teach. My students –all future teachers—worked with me to plan “Literacy Celebration Days,” where parents could bring their children with Down syndrome for fun literacy activities and free reading screenings. We put together information packets for families, with resources they could share with their school teams. Every child who attended received a free book.

On the first day, we scheduled 18 children in half-hour time slots. By noon, there were so many people—children, parents, grandparents, siblings, next-door neighbors—that instead of the orderly, structured event I had envisioned, it felt like a slightly out of control birthday party. But it was exhilarating and joyful!  The activities my students planned were a hit—the children were engaged, the adults were free to chat with each other and we managed to complete a screening for every child who showed up. All throughout the day, Mallury snapped pictures. Hundreds of them.   A few weeks later, I put some of the pictures and a few posts on a blog and sent out an announcement on Twitter and Facebook.  Not long after, I checked the blog statistics and was stunned to see there had been thousands of “hits.” Since it launched in May, people from more than 65 countries have visited the blog. It has hundreds of followers; many of whom are teachers and school administrators. Not only are people reading the blog, they are changing what they do. Armed with current information, parents are advocating for effective reading instruction, and schools are listening. I cannot count the number of times people have called or emailed me after reading the blog to say, “I had no idea…..”  Open Books Open Doors is working its magic better than I had imagined and I hope it spreads like wildfire.

 

YVONNE:  When you first began working with children Down syndrome, were your expectations different than they are now?  How have your expectations changed?

DR. WHITBREAD:  I have to say that my expectations for children with Down syndrome have not really changed.  I am an optimistic person by nature –sometimes naively so-and when I started teaching, I just assumed that all children would learn. I was fortunate to have incredible mentors early in my career —people like Marsha Forest ,  George Ducharme and Beth Mount–who taught me to focus on people’s gifts, not deficits.  I was inspired by the work of Marc Gold, Lou Brown, David Shaw—people who shaped my thinking about what a truly inclusive society could look like. Right now, I am more focused on the expectations of everyone else.  I want people to have an accurate vision of the potential of children with Down syndrome.

YVONNE:  What is the core message you want parents to understand?

DR. WHITBREAD:  Knowledge is power. It is a tough reality, but parents of children with disabilities need to become experts in many areas that parents of children without disabilities do not. Special education law, advocacy, speech and occupational therapy, medical advances—it can be overwhelming and exhausting.  But once armed with knowledge, you are in a better position to advocate for your child. Reading is a complex area. I completed 3 years of post-doctoral training to learn to teach reading. I hope that our blog can help synthesize the research so that parents can use that information to advocate for appropriate programs for children. I believe that parent advocacy is the shortest route to change.

YVONNE:  What are some simple things parents can do starting today to help their child improve their reading skills?

DR. WHITBREAD:  First and foremost, read with your child. Talk about what you are reading, encourage your child to ask questions, actively engage your child in the experience. Second, show your child that you value reading. Have a variety of reading materials visible in your home—from books to magazines to catalogs to store flyers. Take your child to the library. Show your child the many examples of print in his or her environment. Finally, collaborate with your child’s teacher to carry over literacy activities at home.  If your child is learning the sound for the letter “B”, you can talk about all the things in your home that start with that sound. “Look, there is a button. Button starts with the /b/ sound.” “Most children with Down syndrome require more time and practice to learn reading skills. You can increase those learning opportunities by embedding simple activities into your child’s typical routine.

YVONNE:  What are some of the misconceptions that people have about children with Down syndrome when it comes to learning?

DR. WHITBREAD:  Low expectations, low expectations, low expectations.  If you don’t believe a child is capable of learning something, there is not much chance that you will persevere when the child struggles in the learning process.  With literacy, there are a few persistent and damaging myths: 1) children with Down syndrome cannot learn phonics; 2) children with Down syndrome “plateau” in their reading development; and 3) children with Down syndrome need a reading program specifically designed for children with Down syndrome.  All untrue.

YVONNE:  What has been your greatest personal reward from working with children with Down syndrome?

DR. WHITBREAD:  There are not many things in life that can top the thrill of watching reading “click” for a child.  It is often unexpected—you work on blending three sounds together for weeks, or even months, and then suddenly, there it is. You can almost see the light bulb over the child’s head. “Oh! That’s how it works!”  Or that moment when a child realizes that this thing she has been working so hard on is going to give her choice and power and independence. She can read a menu and decide what to order. She can read the song titles on an iPod, a bus schedule, a birthday card, a street sign. She can write notes in class. She can text her friends. It is life changing.

YVONNE:  What words of encouragement would you like to share with parents?

DR. WHITBREAD:  Every day, we are training new teachers in the most current methods of teaching reading to children, including children with Down syndrome. I love the thought that every year, our University is graduating teacher candidates who have the tools they need to provide all children with effective reading instruction.  And if your child’s teacher doesn’t have those skills, there are literacy coaches and reading specialists who can collaborate with your child’s team to put appropriate and effective reading instruction in place.

 

CLOSING REMARKS

DR. WHITBREAD:  I want to thank you for giving me this opportunity to talk about Open Books Open Doors, and I hope readers will  check out the information and beautiful photography on our blog at www.openbooksopendoors.com. Right now, the project focuses on children from Pre-K to grade three, but we are in the process of looking for funding to expand our work to include older children.