The Least Dangerous Assumption a Challenge to Create a New Paradigm

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. Simple magazines, we’ve created a are a great boost to all of us as we settle Our fiscal sponsor, The San Francisco “Calendar of Ideas and Inspirations” in to our new home. On behalf of the Foundation Community Initiative (w w w.disabilitysolutions.org/ advisory board, I want to thank you for Funds (TSFFCIF), provides much calendar.htm). We hope you will your dedication and support. more than use of their tax-exempt find tips and tricks that make life As we continue to create a road map for status. TSFFCIF provides accounting easier as well as thoughts to inspire Creating Solutions, your involvement is services, and other administrative and nourish your soul. critical to our long-term success. If you support services in keeping with IRS ! Also on the website you will find have questions or comments, we want Code for public charities for a small our “Gifts of Celebration” (www. to hear from you. Send an email, letter, fee. 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. After subtracting decides a person cannot read, little has autism, intellectual disabilities, time spent sleeping, eating, in school, or no time is spent on what I would and recently began experiencing at sports practice, and everything call “auditory literacy.” I define grand mal seizures. Rowling’s new else there is to do in a day, it is hard auditory literacy as the ability to book, The Half-Blood Prince, is to find time for homework, much listen to and enjoy literature– either the sixth Harry Potter book and less for recreational reading, no by listening to someone read aloud David has listened to them all. He matter who is doing the reading! in person or by listening to recorded seems to enjoy them, laughing when books on cassettes, compact discs, Often when working with people something is funny and listening or digital audio files. I believe if a with developmental disabilities, intently when it’s serious. These are person cannot read the printed word, this loss can be even greater due, not the first books David has read that inability does not prevent them in part, to the belief they don’t on tape. He has read probably 20 or from being able to understand those understand, so it doesn’t matter. In 30 books with me over the last ten words when they are read aloud. keeping with this belief, listening to or twelve years as well as another a book on tape is often overlooked In fact, audio stimulation for its 15 or 20 alone and it has been a real because people believe the disabled own sake is often a good thing. joy for him. don’t understand what they hear. It For example, how often do you It seems to me that the value of is seen as “just audio stimulation,” get into the car and immediately audio books is often ignored as a and somehow not valuable. How do turn on the radio or a CD? That is valuable reading experience for we know that is true? How do we audio stimulation. Can we honestly children and adults with and without know that someone, like my son, claim that listening to the radio or developmental disabilities. Think does not understand and does not CD player while we are at work, about it: everyone uses traditional benefit from listening to books on in the car, or anywhere else is book and cassette sets with young tape? What is the harm in assuming anything more profound than audio children – up through preschool. he understands and enjoys this stimulation? Not usually. For many Then, children begin learning to read activity? people, audio stimulation—listening and the audio portion of their pre- to music or voice on the radio or Literacy for children and adults with reading experience is left behind. recorded medium--helps them focus. developmental disabilities is often Parents, teachers and librarians You may have heard people say they Continued on page 10

Vol. 6 Issue 3 3 Disability Solutions

Feature Story create a book club for adults with intellectual disabilities. We called Next Chapter Book Club it The Next Chapter Book Club Learning Never Ends (NCBC). The idea is pretty simple. A group of six to eight people who have intellectual disabilities, gather with two volunteer facilitators in a local bookstore or café to read and discuss a book for one hour a week. We accept people with every level of reading ability. Any one who is interested in joining a book club is welcome. Much like members of any other book club, NCBC participants choose the book they want to read and they would like to structure their book club. It typically takes a Next Chapter Book Clubs 12 to 14 weeks to complete a book. When they are done, the club members decide to continue with another book or disband—we’ve never had one disband. by Tom Fish, Ph.D. and Jillian Ober, M.A., C.R.C. Three years later, our book clubs continue to defy the assumptions we Learning never ends. Unfortunately, In addition, adults with intellectual made during the planning process. our society does not apply this idea to disabilities have historically been I vividly remember going out to buy people with intellectual disabilities. denied opportunities to participate eight tape players before starting People with intellectual disabilities in activities that are not segregated. our ﬁrst book club. I thought the leave the formal education system They rarely participate in community participants would need or want around age 21 with few, if any, activities, even though more and to listen to the books on tape, expectations that they are interested more are living and working because they probably could not in, or capable of, continuing to learn. independently in the community. read, and then come to the book Those who do express an interest Many research investigators have club prepared to discuss the book. in learning are usually sent to adult noted that living in the community I could not have been more wrong. basic education programs, where is not the same as being a part of the All of the 20 book clubs we have the staff is not prepared to work community. Community inclusion started have chosen to read their with someone who needs support. extends beyond one’s home and books aloud together. The tape Even if someone with intellectual work. It involves interacting and players have never been opened. So disabilities ﬁnds a reading program, forming relationships with other much for our preconceived notions it is generally a solitary, one-on- community members and belonging about what people with intellectual one activity. The last thing people to clubs and organizations. disabilities want to do or are able to with disabilities who live in the With that in mind, a small group accomplish. community need is another isolated of parents, adults with intellectual activity without friends or the Patty is a 43-year-old member of disabilities, siblings, professionals, one NCBC who lives with her sister. opportunity to make them. and I set out three years ago to Continued on page 12

4 Fall 2005 Disability Solutions The Least Dangerous Assumption

Continued from page 1

that poor performance is due to can learn, or have something • Planning for students’ instructional inadequacy rather to say, we presume that they futures does not include the than to student deficits.” In other don’t, can’t, and probably choice of a postsecondary words, if a student does not do well, never will. education or their interests the quality of the instruction should are not considered over their be questioned before the student’s How Does the Prevailing abilities. Career options ability to learn. Thus, for Donnellan, Paradigm Impact Our Beliefs are geared to lower-skilled the least-dangerous assumption and Actions? jobs or sheltered workshops when working with students with The influence of this paradigm rather than to jobs in significant disabilities is to assume is clear in both our beliefs about integrated workplaces that they are competent and able students’ abilities and in the that require higher-order to learn, because to do otherwise decisions that we make about their thinking or literacy skills. would result in harm such as fewer educational programs. educational opportunities, inferior A Proposition literacy instruction, a segregated When people do not assume that As Kuhn said, it is only when we education, and fewer choices as an students with disabilities are question a prevailing paradigm that adult. competent and able to learn general we can be open to changing not only education curriculum, educational The Prevailing Paradigm our beliefs, but our actions. I propose programs often have the following that believing in the paradigm of Thomas Kuhn (1962), a scientist- characteristics: mental retardation leads to low philosopher, defined paradigms • Students are not included in expectations for students with as shared world views. These general education classrooms. significant disabilities. These low shared views are so strong and If they are, they participate expectations result in segregated institutionalized that only a sudden in functional portions of educational programs, or programs and dramatic break from these instructional routines, but that do not focus on literacy or conventional perspectives can bring not in the discussion of content learning, and narrow visions on a positive revolution in thinking. ideas or content knowledge. for the future. Thus, changing our What is the prevailing paradigm Usually, students are given paradigm about intelligence and about disability and competence? different materials and mental retardation is central to It is defined by four ideas: resources than those used promoting students’ learning, 1. Intelligence is something that by the rest of the class. inclusion, achievement, and quality can be reliably measured. • People talk with students of life now and in the future. 2. Mental retardation is defined as if they are talking with a Flaws in the Construct of as low levels of intelligence. much younger child. They use Mental Retardation words geared to perceived 3. Students who experience An important step in challenging developmental levels or mental retardation can’t t he preva iling parad igm is IQ scores as measured by learn much general education understanding the flaws in the idea traditional assessments. content. Therefore, the and assessment of both intelligence benefits of attending general • Students are not supported and mental retardation. Stephen education classes are limited to engage in social activities Jay Gould (1981), an evolutionary or do not exist. with same-age peers. Those biologist, criticized some of activities are considered 4. When we aren’t sure that the earliest attempts at testing inappropriate or too students know, understand, intelligence as being fraught with advanced. Continued on page 6

Vol. 6 Issue 3 5 Disability Solutions The Least Dangerous Assumption

Continued from page 5 bad science, politics, and racism that of the testing situation was stressful dimensional construct, resulted in the mistaken conclusion or noisy? nor can it (or its absence) that people of northern European Another reason for questioning the be measured accurately descent were more intelligent than prevailing beliefs about intelligence and reliably enough to non-Caucasians. Howard Gardner and mental retardation is a body base students’ educational (1984), an educational researcher, of emerging research that shows programs and future goals has criticized intelligence testing that with high expectations, good on test results. because the kinds of intelligence instruction, and the support of 3. Children learn best when measured by traditional I.Q. tests assistive and communication they feel valued, when people (verbal and language skills and technology, a growing number of hold high expectations for math and problem-solving skills) people labeled mentally retarded them, and when they are represent just one acquire literacy skills taught and supported well. part of a complicated, “...we should and demonstrate Let’s return to the story of Kim who multi-dimensional assume that poor intelligence beyond framework. Based was described at the beginning of performance is due what would have this article. If we “walk through” on this logic, let’s been predicted by agree that measuring two scenarios that represent to instructional their test results very different decisions about i n t e l l i g e n c e i s (Biklen & Cardinal, d i f f ic u lt , i f not inadequacy rather her educational program and use 1997; Broderick & Donnellan’s principle of the least impossible. That than to student Casa-Hendrickson, means measuring the dangerous assumption to consider deficits.” 2 0 01 ; E r ick son, the potential impact of each lack of intelligence Koppenhaver, & Yoder, is also difficult, if decision, it might help us decide Ann Donnellan 2002; E r ick son, which path would be in Kim’s best not impossible. If we Koppenhaver, Yoder, believe these things, interests now and in the future. & Nance, 1997; Koppenhaver et (See colored box on page 7). then we ought to view the label al, 2001; Ryndak, Morrison, & of mental retardation with great Sommerstein, 1999). Influence of the New skepticism. Paradigm on Our Beliefs A New Paradigm When we think about people with and Actions If we are seeing more and more significant or multiple disabilities, If schools adopt the new paradigm e x a mpl e s of p e ople w ho s e in particular, this skepticism of least-dangerous assumption and experience does not align with the is justified. These are precisely the presumption of competence, the prevailing paradigm—who show, the people who have difficulty following would be evident: communicating, whose bodies when supported, they have learned move erratically, and who have not more than we assumed they were • “Person-first” language been taught the language or skills able to learn, then a new paradigm is used so that people say intelligence and adaptive behavior must be developed that accounts “students with autism,” not tests measure. How would you score for this. This paradigm would “autistic students.” on an intelligence test if you could be characterized by the following • L a ng u a ge c l a s si f y i ng not talk, write, or type accurately? ideas: students based on their If you were not exposed to or taught 1. All people have different functioning or developmental receptive or expressive language talents and skills. level is not used; rather, skills? How well would you do taking descriptions of students 2. Intelligence is not a one- the test if the sensory environment Continued on page 8

6 Fall 2005 Disability Solutions The Least Dangerous Assumption

Scenario One Scenario Two

Assumptions Assumptions We assume that Kim is not “smart” – that she does, in We are not sure about what she knows or might be fact, have mental retardation, defined as significantly able to learn in the future…we don’t have conclusive sub-average intelligence and ability to learn. How might data to guide our decision-making. But this time, we she be treated? operate from a different set of assumptions. We treat Educational Setting her as if she is smart, because we distrust the validity of her test results in light of her communication and First, we might not try to teach her to read or if we did, movement difficulties. it would be functional sight words. Second, we would speak to her in language more appropriate to a younger Educational Setting child. Third, Kim would probably spend her educational First, we use a variety of methods to teach her to read. career being taught functional skills such as dressing, Second, we talk to her the same way we do other 16 eating, shopping, cooking, and cleaning. In most states year old students who have no disabilities. Third, she would be educated in a separate classroom alongside we enroll her in general academic classes where we other students who also have significant disabilities. implement her reading program and support her with If she did join the rest of the student body, it might be adapted materials and instructional supports. We take during lunch or perhaps a class such as music or art. advantage of natural opportunities to teach her the Communication Support functional skills that are essential for membership, full participation, and learning. The communication vocabulary and supports that we would make available to her would correspond to our Communication Support assessment of her sub-average intelligence and relate to We talk with her about current events. We make the functional skills we were teaching. The messages sure her communication system includes words and might include “hi, bye, more, bathroom, hungry, break, concepts that are appropriate for someone who thinks I feel _____, yes, and no,” instead of age-appropriate about current events, love, relationships, and her social vocabulary and messages that would enable her to future. communicate about the general education curriculum. Friendships and Dreams Friendships and Dreams We encourage her to participate in activities that her We would not encourage her to participate in the typical classmates are involved in and provide communication social life of her same age classmates because we would tools and support for her to be successful. We encourage assume that her disabilities were too significant for her her to make friendships and assume she is capable of, to enjoy the same activities. Interactions between her and interested in, having friends. As she approaches and students without disabilities would be limited to the end of her school career, we prepare for a variety their volunteering to be her peer buddy or helper. As she of options including postsecondary education as a approached the end of her school career, the possibility graduation option. In addition, we plan for her to move of her attending college would not even be considered. into an apartment, own her own home, work at a real Instead, we would plan for her to move into a group job, or travel. home, attend a day habilitation program or work in a sheltered environment, and pursue specialized leisure and recreational opportunities with other adults who Which do you think is have similar disabilities. We would not expect her to The Least Dangerous Assumption? have opinions about world events, her future, love, or about anything else considered to be above her cognitive Once you choose, turn the page. level. Continued on page 8

Vol. 6 Issue 3 7 Disability Solutions The Least Dangerous Assumption

Continued from page 7

It is now several years in the future. A remarkable discovery has made it possible to determine without question how smart someone is using a simple brain scan. Here are the results.

Scenario One Scenario Two The brain scan results show, surprisingly, that Kim The brain scan results show that Kim has an IQ of has an IQ of 100. She does not have an intellectual 40. She does have an intellectual disability. What are disability. What are the consequences of our original the consequences of our original assumption of her assumption of a low IQ—of our being wrong? Has any intelligence being wrong? Has any harm been done? harm been done? Most people say nothing has been lost. Even though Most people say we lost an opportunity to teach her Kim may not have learned much of the general things she could have learned. We did not include her education curriculum, her educational program offered in the mainstream of general education as much as we her opportunities to develop life-long interests, to make could have and she did not develop a wide network of friends with students with and without disabilities, to social connections or friendships. She missed out on be part of the social life of the school, and to truly be the regular high school experience. It is possible we part of the community after graduation. Because we negatively inﬂuenced her self-esteem by treating her took advantage of natural opportunities to teach her as if she were not smart. We narrowed the possibilities functional skills within the natural context of the day, for her future career or post secondary education. And she probably learned and generalized them better than certainly, we wasted a lot of money pursuing the wrong if they had been taught as a discrete skill in an isolated educational program. or segregated setting. continued from page 6

focus on their abilities and general education subjects knowledge or skills. strengths. and meaningful functional • People speak directly to goals such as learning to use • Annual goals on IEPs reﬂect students rather than speaking email, asking a friend out on content standards from the to students through a buffer a date, providing guidance general education curriculum supplied by paraprofessionals to a personal care assistant, and the functional skills or other people who are and putting on make up or necessar y for students considered to be assisting shaving. to fully participate in the the students. ma i n st re a m of school • Students are seen as capable • People use age-appropriate and community life. For of learning; educators do not vocabulary, topics, and example, IEPs would contain predict that certain students inflection when talking to priority goals in all of the will never acquire certain students.

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Continued from page 7

• People do not discus students show they are more capable Parents and educators of students lack of skills or challenges in when they have a means with disabilities care about and want front of them unless they are to communicate and are to do the very best for those students. a part of the conversation. provided with high quality Using least dangerous assumption • Parents receive feedback instruction. as a guide is a powerful tool for regarding student success 4. To presume incompetence keeping alive a vision of a valuable rather than highlighting could result in harm to our life and quality communities. s t u d e n t f a i l u r e s a n d students if we are wrong. disabilities. 5. Even if we a re w rong Cheryl M. Jorgensen, Ph.D., is an • Staf f members respect about students’ capacities Assistant Research Professor with s t u d e n t s ’ p r i v a c y b y to learn general education The Institute on Disability at the discussing the students’ curriculum content, the University of New Hampshire, A Center of Excellence in Disabilites; personal care, medical consequences to the student Project Director for “Beyond Access: needs, and other sensitive of that incorrect presumption A Model that Promotes Learning issues out of earshot from are not as dangerous as the of General Education Curriculm others, and only with those alternative. Content for Students with Signiﬁcant people who genuinely need Deciding on Your Least Disabilites;” and teaches students the information. Dangerous Assumption to become Inclusion Facilitators. Dr. Five Reasons Why Our Least Jorgensen is a co-author of Including Those of us involved in the educational Students with Severe Disabilities in Dangerous Assumption Should lives of students– parents, teachers, Schools¸ and author of Restructuring Be to Presume Competence psychologists, speech-language High Schools for All Students: Taking There are at least five reasons pathologists, policy makers, and Inclusion to the Next Level and why I believe our least dangerous researchers – must decide what our The Inclusion Faclitator’s Guide (Available Fall, 2005 from Brookes a s s u mp t i o n i s t o p r e s u m e least dangerous assumption will be Publishing). competence. and whether we can live with the possibility of being wrong. If we are 1. Human intelligence is a not sure, we might ask ourselves: multi-faceted construct Acknowledgements: r a t h e r t h a n a u n i - • How would I want to be treated The preparation of this article was dimensional characteristic if someday I was unable to supported in part by a grant to the and measuring it with a communicate or demonstrate Institute on Disability/UCED at the University of New Hampshire from test is invalid and leads to my competence? the U.S. Department of Education, mistaken conclusions about • How would I want others to Ofﬁce of Special Education Programs a person’s capacity to learn. treat my child if he or she (#H324M020067). The opinions 2. Assessments of students’ were in the same situation? expressed herein do not necessarily I.Q. are seriously f lawed • W h at d o a du l t s w i t h represent those of the U.S. Department of Education or the University of New when they have difficulty disabilities tell us about their Hampshire c o m m u n i c a t i n g a n d educational experiences movement challenges. and how they want to be 3. Research shows that a treated? References for this article are on growing number of children • What does research tell us? page 15. and adults labeled retarded • What does history tell us?

Vol. 6 Issue 3 9 Disability Solutions Books on Tape Whose Choice Is It?

Continued from page 3 work better with “background David seems to enjoy our literary on his head. Most of the time, this noise.” That background noise adventures. He continues to laugh isn’t a problem because he and I is audio stimulation. It can also when it’s funny. I’ve noticed that listen when we are alone together at be soothing and relaxing during he displays less head-rocking and home or in the car. Generally, if he stressful moments. Even if that is tapping when we’re listening to a has headphones when other people all a person gets out of listening to book. are in the car, he will use them, at music or an audio book, isn’t that It may take longer for us to listen least for awhile. good enough? to a book together as compared to It’s important not to force the issue. My son, David, does not talk. That’s reading it separately, but I believe I ask Dave if he wants to hear some not to say that he makes no sounds that it is time well spent. Through of whatever we’re currently listening or cannot communicate. He does audio books, David touches popular to, and if he nods “Yes,” he or I put both rather well. In addition, his culture. He participates. He belongs. it on. If he nods “No,” or pushes attention span is different: it can be He waits for books to be published me away, I wait for another time. longer or shorter depending upon that relate to movies he has seen Just like anyone else, he doesn’t what is happening around him. or wants to see. Finding them always want to listen to a book. It Dave has always loved videos and in audio format is truly exciting. is important to allow your child or books. We discovered that he has Among our most recent non-audio adult to listen to age-appropriate a sense of humor because he was book purchases are novelizations of books. I’ve seen special education listening to an audio book (Go, Dog, Fantastic Four and Batman Begins, teachers stop trying to read to Go!) and laughing uproariously and we are eagerly hoping to find their middle and high school aged whenever the tape reached a funny them in audio format. part. This was great as long when Getting started with audio he was young enough to enjoy books with your child or children’s book cassette sets. Years adult is easy. Choose a title later, at the Erie County Library that relates to something Bookmobile, he discovered an audio your child is interested in. We edition of a Star Trek book that he started with books that are owns in paperback. We borrowed novelizations or adaptations this book and he listened to it several of television programs or times before it was due back. That movies Dave enjoys. As I was the beginning of our collection mentioned earlier, Dave saw of audio books. He clearly has a Star Trek Book in audio favorites, because he plays some of format that we already had them over and over and others he in paperback and let me know he students because they disapproved doesn’t finish. wanted to listen to it. We borrowed of subjects or language. (People I like listening to books—in the car it from the library where he saw it. with disabilities apparently aren’t and at lunch when I was working. I showed him the cassettes were the supposed to know about sex or This expands Dave’s literary horizons same as the book. He already knew strong language.) to include spy novels, adventure, how to operate the cassette player. It is a great pity that publishers fantasy and other science fiction. Once we established that this was typically publish audio editions When I find an audio book I like, I the story, Dave was in great shape. of bestsellers only and, often, in share it with him. If I read a book Persuading him to use headphones abridged format. Dave would be I think will interest him, I find out was, and continues to be, an “iffy” happy if all the Star Trek episodes if it is available in an audio format. proposition. He doesn’t like things – in all four incarnations – were

10 Fall 2005 Disability Solutions Healthy Lives & Informed Books on Tape Choices

available in audio books as well as practice and until the beginning of activity. I’m sure that Dave would all the related books. He would track meets. Sometimes, he listens tell you audio books are a great probably say the same for programs alone but, for the past few years, we invention! Our next adventure is like SeaQuest DSV, The A-Team, have listened together. And together, The Hunt for Red October . Our best Space: Above and Beyond, Space we continue to look for new titles. wishes to you on yours. Rangers, Battlestar Galactica, He knows where the audio sections Stargate, MacGyver, and many are located in our local Barnes Karin Mentz, MLS, is a librarian who others. All of the Star Trek and Star and Noble and Waldenbooks. It’s has worked many years assisting Wars books are not to be found in really frustrating for him when people with disabilites, their families, audio editions. It’s a shame for him the displays are moved. Our local and others ﬁnd resources. She is the and many others. I know a few folks Barnes and Noble store recently mother of two children, one of whom who would like to own and listen to moved the audio section back to it’s is David, an avid audiobook reader. them, over and over. original location after trying out a different layout. Dave couldn’t be Editor’s Note: I enjoy this time with Dave. Together, As we go to press, I received an email we have listened to and enjoyed a happier. He never liked the “new” location. from Karin telling me David has number of books (see below). Audio discovered two Star Trek titles he has books can be enjoyed anytime Now that Dave has finished high not read (recently), asked for new and almost anywhere. Dave, for school, he and I continue to enjoy batteries for his tape player, and was instance, used to listen to cassettes audio books together, and on our heading happily to his room for a new while we waited for his sister at track own. We encourage you to try this adventure. Dave’s Audio Book Recommendations An “(A)” after a title indicates it is an abridged title.

The Phantom of the Opera The Trumps of Doom (A) Star Trek: Sarek (A) Harry Potter and the Sorcerer’s Knight of Shadow (A) Star Trek: Spock vs. Q Stone Sign of Chaos (A) Star Trek: Generations (A) Harry Potter and the Chamber of Blood of Amber (A) Star Trek the Next Generation: Secrets Prince of Chaos (A) First Contact (A) Harry Potter and the Prisoner of The Quiller Memorandum Star Trek the Next Generation: Azkaban Quiller’s Run Ashes of Eden (A) Harry Potter and the Goblet of Fire The Tango Brieﬁng Star Trek the Next Generation: Harry Potter and the Order of the Quiller Barracuda Insurrection (A) Phoenix The Pekin Target Star Trek: Web of the Romulans (A) The Hobbit Star Trek: The Return (A) Star Trek Deep Space 9: Fallen The Fellowship of the Ring Star Trek Voyager: Mosaic (A) Heroes (A) The Two Towers Star Trek Voyager: Caretaker (A) Star Wars: The Approaching Storm The Return of the King Star Trek Deep Space 9: Emissary (A) Star Wars: Attack of the Clones Nine Princes in Amber (A) Star Trek the Next Generation: Star Wars: The Phantom Menace The Guns of Avalon (A) The Valiant (A) Star Wars: A New Hope Sign of the Unicorn (A) Star Trek the Next Generation: Clive Cussler’s Trojan Odyssey The Hand of Oberon (A) Kahless (A) The Courts of Chaos (A)

Vol. 6 Issue 3 11 Disability Solutions Next Chapter Book Club Healthy Lives & Informed Choices

Continued from page 4

After about six months of bringing range of reading abilities and literacy coffee houses, which have emerged Patty to and from her book club, behaviors, and a unique personality as social gathering places for many her sister said she was amazed at as a result of this unintentional people. how much more Patty had been variety. We currently have 20 book The books in our library are chosen reading since being in the NCBC. clubs with 115 participants and 40 based on their popularity and She speciﬁcally noticed Patty was volunteers who range in age from readability. Many groups choose to reading billboards and trafﬁc signs 18 to 82. Our volunteer facilitators read adapted classic novels such as as they drove to and from the book are college and high school The Secret Garden, Tom Sawyer, club, something she had never done students, retirees, homemakers, and A Wrinkle in Time, while others before. Gene, a 60-year-old member professionals, and people with choose current stories such as the of an NCBC shares, the impact the disabilities. We provide training and Harry Potter series. Still others book club has had on his life: “This support for our facilitators providing have chosen to focus their reading is what I’ve wanted to do all my life. a variety of strategies to include all on sports and spend their time Since I’ve been in the book club I’ve participants. reading the sports page of the local been learning.” Family members Next Chapter Book Clubs are held newspaper. tell us their loved ones have “made in inviting, community settings lasting friendships” as a result of The NCBC is designed to promote such as Border’s Books and Music, literacy, social interaction, and participation in their book club. A Barnes and Noble, Panera Bread, volunteer facilitator said, “We have community inclusion. It is an Target Café, and Caribou Coffee. opportunity to reduce the social all become real friends and, to a The inclusive nature of the NCBC great extent, have positively changed isolation and segregation many changes public awareness of people adults with intellectual disabilities each other’s lives.” It sounds like any with disabilities. It also provides other book club, doesn’t it? face and engage in meaningful adults with intellectual disabilities literacy and social activities. More Each Next Chapter Book Club is full the opportunity to experience the impor tantly, however, NCBC of racial and ethnic diversity, a wide culture of bookstores, cafés, and members are learning and making friends and having a lot of fun doing it.

Tom Fish is the Program Director of The Next Chapter Book Club Program. He directs the Family Support and Employment Program at the Ohio State University Nisonger Center on Excellence in Disabilites and serves on the board of the Ohio Down Syndrome Association. Jillian Ober is the Program Coordinator for NCBC and an employee of the OSU Nisonger Center.

More information about The Next Chapter Book Clubs is on page 15.

12 Fall 2005 Disability Solutions Healthy Lives & Informed Choices

Book Review

Reviewed by Learning to Listen:Positive Mary Beth Pilewski Paul Approaches and People with Difﬁcult Behavior Herbert Lovett, Ph.D. of Boston, By Herbert Lovett, Ph.D. was a leader, scholar, teacher, and advocate for people with disabilities Paul H. Brookes Publishing Co., Inc., and their families. He died in an 1996. ISBN 1-55766-164-2 . $29.95 automobile accident in 1998. He was 48. His untimely death brought an outpouring of grief and condolences from people around the world. From the Paul Brookes’ Lovett begins with a simple enough you tell me what you need?” “Does Publishing Co. web page. premise: when people in power are your head hurt?” in charge of people who have no He asks us to use “best guesses” My original interest in Learning to power, they tend to hide behind the when someone communicates Listen came at a time in my son’s guise of “We know what is best for with difficult or even dangerous life when he would scream very you, and we will help you change.” behaviors. He claims to have loudly. He hit, scratched and tried But then he turns this premise on no answers. Instead, he offers to bite people, and ripped things its head with the application of approaches, strategies, and painful off walls. He couldn’t use words to the Golden Rule. Who in our lives struggles. tell us what bothered him, and the decides when we eat, go to bed, have Throughout each chapter he tells people around him were frightened, a say-so in how we fill our days? stories about real people with angry, and exasperated with him all How would I feel if everyone I knew difficult behaviors and how the the time. was meeting about me, devising a staff/caregivers/teachers/agency I dipped into this book and talked plan that would make me easier to teams responded, failed, asked for with people who had worked with manage? How would I feel if the help, changed, and/or abandoned Herb Lovett. What I was able only people who spent time with that individual. to learn about positive supports me were paid to be with me? How would I feel if no one ever put their The lengthy chapter on “The helped us as our family, friends, and Hierarchy of Control” takes an school team began to sort out what arms around me because “adults don’t hug”? unﬂinching look at some subtexts purpose my son’s screaming and of behaviorism. Here is where I other behaviors served. Lovett covers the premise of what is realized this is a political book, as I hadn’t read Learning to Listen now generally referred to as “positive Lovett talks about behaviorism as a all the way through until recently. approaches” in this challenging system that exerts power and control Now I am even more aware that book. He asks that we think not just over the helpless instead of being my son is still trying desperately to about the surface issues concerning there to serve. those with ‘dangerous behaviors”, connect with us. I love Herb Lovett’s This book stands apart because challenge to dig deeper, encourage but to imagine what purpose the behaviors serve. While there is no Lovett also puts himself in the shoes relationships, and help our son live of the agency staff, of the failing his life. cookbook approach here, he urges us to ask: “How can I help?” “Can systems, of the direct caregivers. He believes that most people attempting Continued on page 14

Vol. 6 Issue 3 13 Disability Solutions Book Review

continued from page 13 to help do have good intentions; they have chosen to view the people dozens of lines such as the above don’t want to abandon people who who need help and how we that we can reﬂect on and act on. desperately need them but they too have acted on our subsequent Doing so would honor the legacy often feel helpless and ignored. good intentions. Our most that Herb Lovett left behind, that Another poignant aspect of this pressing problem is that we of helping people gain some control book is Lovett’s own humility, and have not listened carefully to over their own lives without being thus we see his own humanity. By those we would serve. punished, hurt, or ignored. putting himself in others’ shoes he …By living with, working was willing to expose his own pain with, and respecting people and doubts. In this context, his who are “not in control,” we Mary Beth Pilewski Paul, M.Ed., is death was quite untimely, just two can all learn an invaluable the Book Review Editor for Disability years after Learning to Listen was (and sometimes new) social Solutions. She spent many years living and working with people with published. skill-cooperation.” disabilities. She is the mother of Pete, “After all-and before all-some My paperback copy of Learning to a teenager who has Down syndrome people really need help to live. Listen is now ﬁlled with underlines and autism. Mary Beth lives with her The problem lies in how we and exclamation points. There are husband and son in central Ohio.

One outcome of reconsidering the with the usual Believe in My Child With least dangerous assumption is a information. Special Needs! change in how others view people Once I began with disabilities. The person-first to read it more Helping Children Achieve language movement changed how we c a r e f u l l y, I Their Potential in School describe people with disabilities. Dr. cha nged my Jorgensen challenges us to change mind. by Mary A. Falvey our beliefs about the potential for Falvey chal- Paul H. Brookes Coompany, 2005. people with intellectual disabilities lenges readers ISBN: 1-55766-702-0. $18.95 and how we support them. One of the to find supports first signs that change is beginning t o f i t t h e to take hold is when it is seen in the student. She doesn’t stop with stories, creating positive, welcoming content and language of books. stating the fact that students are environments, and developing During the editing process for this entitled to supports for success, friendships are a few examples. issue I began to look at the books in she challenges readers to reframe In the end, Falvey, a professor at the Creating Solutions library. As I how they view supports. One small CSUN Los Angeles and mother did, I realized the latest release sent example is a table in which she of a child with disabilities, has for review, Believe in My child with educates professionals regarding written a guide to the educational Special Needs! Helping Children ways to reframe their thinking system from birth to age 21 that Achieve Their Potential in School titled, “Positive Alternatives to embraces the change in belief already reflects this shift in attitude Weakness Statements.” In addition, system Dr. Jorgensen presents. toward people with intellectual and she describes the different methods What makes this book stand out is other disabilities. My first thumb of creating supports for success. her clear student-centered approach through, I thought this book was Most general handbooks stop short the highly respectful tone and just another guide to navigating the of explaining what supports may be presentation. And it comes with a system and crafting an I.E.P. filled useful. Falvey describes them: social bumper sticker, too! –JEGM

14 Fall 2005 Disability Solutions Resources & References

Would you like to bring The Next Chapter Book Club to your Community?

Our training workshop includes: Who should attend? • Extensive review of the NCBC model and the history • Any sponsor agency staff member interested in being and rationale for the development of the NCBC a part of the program. • Program handbook and materials • Community members interested in becoming • One-hour demonstration Book Club volunteer facilitators. • Review of website tools • Potential collaborators including NCBC host site representatives. • Debrieﬁng session • Consumers and anyone interested in lifelong learning • Ongoing technical assistance opportunities. If you would like to bring this exciting and innovative program to your area, contact the NCBC today! (Costs for training vary depending on location) Jillian Ober Program Coordinator (614) 247-6392 [email protected] www.nextchapterbookclub.org References from page 9 • American Association on Mental • Donnellan, A. (1999). Absence of • Gould, S. (1981). The mismeasure of Retardation (2002). Definition, evidence: Myths about autism and man. New York: W.W. Norton and Co. mental retardation. TASH Newsletter, classif ication, and systems of • Koppenhaver, D., Erickson, K., May 2000. supports. 10th Edition. Washington, Harris, B., McLellan, J., Skotko, B., & DC: American Association on Mental • Erickson, K., Koppenhaver, D., & Newton, R. (2001). Storybook-based Retardation. Yoder, D. (2002). Waves of words: communication intervention for girls • Biklen, D., & Cardinal, D. (1997). Augmented communicators read and with Rett Syndrome and their mothers. Contested words, contested science. write. Monterey, CA: Augmentative Disability and Rehabilitation, 23, New York: Teachers College Press. Communication. 149-159. • Broderick, A., & Kasa-Hendrickson, • Erickson, K., Koppenhaver, D., Yoder, • Kuhn, T. (1962). The structure of C. (2001). Say just one word at a time: D., & Nance, J. (1997). Integrated scientific revolutions. Chicago: The emergence of reliable speech in a c o m m u n i c a t i o n a n d l i t e r a c y University of Chicago Press. instruction for a child with multiple student labeled with autism. Journal • Ry nd a k , D., Mor r i s on , A ., & disabilities. Focus on Autism and of the Association for Persons with Sommerstein, L. (1999). Literacy Other Developmental Disabilities, Severe Handicaps, 26, 13-24. before and after inclusion in general 12(3), 142-150. • Donnellan, A. (1984). The criterion education settings: A case study. of the least dangerous assumption. • Gardner, H. (1983). Frames of mind: Journal of the Association for Persons Behavioral Disorders, 9, 141-150. The theory of multiple intelligences. with Severe Handicaps, 24(1), 5-22. New York: Basic Books.

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