WILLIAMS SYNDROME LITERACY
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Reading Assessments Update

9/21/2018

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At the WSA Convention in Baltimore and at the Michigan camp this summer, many families asked about getting a reading assessment to help determine how best to teach their children to read.  Phone call and email follow-ups have been inquiring when the heck we're going to get started.  Here is clarification and update info:
  • The assessment we're going to do is NOT the assessment we did at camp.  That was a standardized assessment that may help us understand reading difficulties your children are experiencing.  We cannot at present make direct instructional recommendations based on those results, so while that would give us additional research participants, you would get nothing in return.
  • The assessment we are willing to do is an informal diagnostic assessment of reading that my colleagues from the Center for Literacy and Disability Studies and I developed and have been using for many years.  Sydney and I presented our findings in Baltimore on my use of that assessment.  That does allow us to make recommendations of materials, strategies, approaches, and technologies to help your child learn to read better.
  • Our plan is to offer this assessment online via videoconferencing software.  That means, you and your child can sit in front of your home computer while Sydney and/or I sit in front of ours.  We can conduct the assessment online and then direct you toward useful resources based on the results.
  • Our plan is to offer this service at no charge if: (1) you are willing to let us videotape the assessment and use it for educational purposes (i.e., to teach educators, related services personnel, and families) about the diagostic assessment process; and (2) you are willing to let us store the data (i.e., the video and your child's reading results)  in order to write up a research report when we have a large number of such results, in order to help people better understand literacy in individuals with WS.
  • Because of that plan, my university requires me to submit paperwork to our Institutional Review Board.  I will begin that process next week, it will be several weeks before that is approved.  That will result in: (1) oversight that should assure you that Sydney and I will behave ethically and (2) assent and consent forms that children and families will have to sign off on in order to move forward with assessment and recommendations
That means we are probably 4-6 weeks away from being able to start scheduling and conducting reading assessments with you and your child online.  In the meantime, we will continue to expand the informational literacy resources you will find available at this website.
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Williams Syndrome Literacy: A Short History

9/21/2018

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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. 
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