Williams Syndrome Literacy: A Short History

At the ATIA Conference in January, 2017, Robin Pegg encouraged a colleague and me to come to a wonderful camp in Michigan for teens with Williams Syndrome (WS).  She wanted us to begin to explore how we might help these folks learn to read and write better.  I was able to visit for a few days, conduct 11 informal reading assessments, and find out that, at least among those 11 teens and young adults, there were a wide variety of reading abilities and multiple learning sources of learning difficulty.

Sydney Shadrick, an undergraduate special education major at Appalachian State University, and I presented our understanding of those assessments and suggested teaching implications at the Williams Syndrome Conference in Baltimore this past summer.  We also co-presented with Clancey Hopper, a brilliant young woman with Williams syndrome, about a series of interviews we conducted with her and her parents trying to figure out how she got to be such an excellent reader.  At camp, Clancey had volunteered to help me try out my informal reading assessments and topped out in all areas.

Sydney and I returned to the camp for two weeks this past summer and used a standardized test battery with more than 30 children and adolescents to try to dig a little deeper into some of the reading challenges.  We are analyzing that data at present.

In all of these experiences, Sydney and I have met parent after parent after teacher after speech-pathologist, who struggle in trying to help a child with WS learn to read.  This website is being set up to try to more systematically address these questions.  Among our plans for its use are: 

• keeping families and practitioners updated on what we learn in our research;
• making our answers to one person's questions available to any and all of you who may be  interested;
• linking you to materials, technologies, and instructional resources that we believe may help you support literacy learning in the child(ren) you care about most.

Send us your questions, comments, suggestions, and we'll do what we can.