The Least Dangerous Assumption a Challenge to Create a New Paradigm
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A publication of A Resource for Families & Others Interested in Down Syndrome & Developmental Disabilites Volume 6, Issue 3 Fall 2005 The Least Dangerous Assumption A Challenge to Create a New Paradigm by Cheryl Jorgensen, Ph.D. Imagine you are about to meet for the vocalizations to express emotions. intelligence testing, the label of first time a young woman who will When she is frustrated by a task or mental retardation, and the vision be coming to your high school this situation, she runs away or sometimes that we have for students with year. Before you do, the following hits herself or others. She does not this label. In this article, I want to was shared with you about her. appear to be able to read. propose and add my voice to the Kim is a 16-year-old student who has How does this information affect work of other parents and educators a label of severe mental retardation.1 her parents’ and educ ators’ who believe that only by creating The usual battery of intelligence decisions about Kim’s educational a new paradigm, or shared belief, tests and adaptive behavioral program and adult life? Should of high expectations based on the evaluations have assigned her an you a ssume t hat t hese test principle of the least dangerous IQ score of 40 and a developmental results, labels, and observations assumption can anyone, parent or age of 36 months. She has seizures are accurate representations of professional, make decisions about and sensory impairments. Her her current abilities and future students’ educational programs that motor movements are jerky and learning potential? Do you advocate will lead to a quality life in school uncoordinated, making it difficult for her educational program to and throughout their adult lives. for her to get around in small areas, reflect content learning from the In 1984, Anne Donnellan, a respected write legibly, or use a computer. She general education curriculum or researcher in special education, wrote is sensitive to certain environmental is it based on teaching functional that “the criterion of least dangerous stimuli such as bright lights, loud life skills? Should she be educated assumption holds that in the absence noises, and rough textures in her alongside students with significant of conclusive data, educational clothing. She has no conventional disabilities only or included in a decisions ought to be based on way of communicating. She uses general education class? assumptions which, if incorrect, facial expressions and random In order to answer these questions, will have the least dangerous effect you first need to understand the on the likelihood that students will 1. Cheryl cautions readers to question prevailing paradigm, or belief, be able to functional independently traditional definitions whenever that governs the way that most as adults.” Furthermore, she the words “mental retardation” or people think about intelligence and concluded “we should assume “intelligence” are used. Continued on page 5 In this Issue The Least Dangerous Assumption...1 Enhancing Literacy . 3 Book Reviews . 13-14 A Challenge to Create a New Using Audio Books Learning to Listen: A Timeless Classic Paradigm. Next Chapter Book Club . 4 Believe in My Child with Special References . 15 Learning Never Ends Needs! Letter from the Editor . 2 Bring NCBC to Your Community . 15 A Feeling of “Settling In” Disability Solutions Welcome Letter from the Editor A Feeling of “Settling In” It’s clear that Fall is here: I can see Down Syndrome Congress, an tangible information. Our 1999 my breath in the air, the leaves are author for Disability Solutions special issue on this dual diagnosis beginning to turn bright red and (4:5&6), and the mother of two continues to be the second-most orange, and in Oregon, after months daughters, one of whom has Down downloaded issue of Disability of consistently sunny days, the rainy syndrome. Solutions and the most frequently season has begun. Fall brings more than ! We also welcome the addition of requested back issue. a change in season. It brings the start of our Book Review Editor, Mary Beth We received so many letters after our school and a feeling of settling in. We’re Pilewski Paul, M.Ed. Mary Beth last publication, getting the mail each settling in to our new home at Creating coordinates and contributes reviews day became an “event.” What a treat Solutions and would like to share with for Disability Solutions as well to hear from so many of you. Your you what has been happening since our as for our website. Mary Beth has generosity has paid for about half of the last publication. worked and lived with people who costs for printing this issue, reaching Many of you have asked about the role have developmental disabilities, and over 10,000 readers in print along with of a fiscal sponsor. A fiscal sponsor, is the mother of a teenaged son who an average of 200 people who visit our sometimes known as an “umbrella has Down syndrome and autism. website each day and download over organization,” is a legal way to receive If you would like to be a part of 25,000 issues of Disability Solutions in tax-deductible contributions and grants the review team, send an email to the month of September alone. by putting your project under the [email protected]. Equally important are the warm and tax-exempt umbrella of an existing ! If you haven’t visited our website supportive messages we received nonprofit organization. It’s a simpler lately, take a moment to check it out. regarding our move to a separate entity, and less expensive way to receive funds Not only does it have a new look, Creating Solutions. Your suggestions, for charitable purposes than creating a but, in the spirit of both O and Real words of encouragement, and donations separate nonprofit organization. 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Our partnership with TSFFCIF has disabilitysolutions.org/celebrate. or call. Our contact information is on saved Creating Solutions a great deal htm), a list of volunteer opportunities, the back cover. of time and money. It has also allowed and our newest addition, “The Editor’s us to focus on fulfilling the mission of I hope you all take a little time to enjoy Blog,” a periodic editorial (www. Creating Solutions: “To do good work the crisp, colorful landscape of fall. disabilitysolutions.org/blog.htm). for, and with, people with disabilities and their families.” ! We have begun work on The Down Syndrome and Autistic Spectrum Warmly, Other News Disorder Information Center, ! We are pleased to welcome Terri an internet-based program by Couwenhoven, MS to our advisory beginning to establish an advisory board. Terri is the owner of TC board. We are excited about working Joan Guthrie Medlen is the Project Director of Services, Clinic Coordinator for collaboratively with many different Creating Solutions, Editor of Disability Solutions, the Down Syndrome Clinic in advocacy groups, medical and and author of The Down Syndrome Nutrition Wisconsin, member of the Parent education professionals, and Handbook. She is the mother of two teenaged boys, one of whom has Down syndrome and autism. Advisory Board for the National families to provide up-to-date 2 Fall 2005 Disability Solutions Feature Story difficult, if not impossible, to prove. Enhancing Literacy with Books For this article, “literacy” means the ability to read and understand on Tape as well as the ability to listen and enjoy. In my experience with David, assumptions made about his abilities by Karin Mentz, M.L.S. – or lack of them – are dangerous and misleading. With this in mind, it Potter-mania struck our house still read aloud to children once they seems to me that the audio book is a along with countless other homes are reading on their own, but with resource for David and other people around the world. My daughter the pressure of reading and other with developmental disabilities of Kate and I picked up our copy of assignments every evening, this all ages that is frequently under- the latest book at the Barnes and activity loses ground. Slowly, the act utilized or overlooked entirely. Noble midnight party and I read of holding a book and looking at the In a good educational program, a the book over the weekend. Kate page while listening to a reader is tremendous amount of time and read it next. Now it’s David’s turn. gone, in most cases, forever. It isn’t effort is spent on pre-reading and He and I are listening to the audio a deliberate loss. There are only 24 reading skills. However, if a team version. David is twenty-three. He hours in each day.