NATIONAL DOWN SYNDROME CONGRESS CONVENTION 19 al 21 JULIO, 2013 DENVER, CO

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1 NATIONAL DOWN SYNDROME CONGRESS CONVENTION 19 al 21 JULIO, 2013 DENVER, CO PRE-CONFERENCIA F Estrategias para fomentar cambios positivos en el comportamiento de su hijo Scott Shepard, Director de Avenues Supported Living Services, catedrático de CSU Northridge, miembro de la Junta Directiva de Cal-TASH, Valencia, CA (Disponible con interpretación simultánea al español) Es posible ver un cambio hacia un comportamiento positivo! Esta sesión le permitirá descubrir las razones por las que su hijo se comporta de una cierta manera y lo más importante, la forma en que usted puede lograr cambios positivos. Los participantes recibirán una visión general sobre la evaluación funcional, aprenderán a identificar las motivaciones de la conducta, cómo identificar y enseñar conductas y destrezas que reemplacen el mal comportamiento, de forma que se ofrezca una alternativa a los comportamientos problemáticos. En esta preconferencia usted descubrirá estrategias para comenzar a andar por el camino correcto. Los principios pueden aplicarse tanto a niños como a adultos de todas las edades. Objetivos: Identificar los mensajes que se intentan transmitir y las motivaciones que hay detrás de un comportamiento problemático Identificar comportamientos y destrezas que reemplacen la mala conducta, para enseñarles una nueva alternativa y que dejen atrás los comportamientos problemáticos Aprender a utilizar estrategias de apoyo proactivas en lugar de simplemente manipular las consecuencias para tratar de controlar a personas que tienen reputación de mal comportamiento. Sobre el ponente: Scott es Director Avenues Supported Living Services y profesor adjunto en CSU Northridge, en el Departamento de Educación Especial. Scott tiene 30 años de experiencia en apoyo a personas con discapacidades y sus familias. Se desempeñó como capacitador estatal y nacional del National Rehabilitation Research & Training Center on Positive Behavioral Support (RRTC) (Centro Nacional de Investigación y Entrenamiento en Rehabilitación para el Apoyo Conductual Positivo) de 1988 a Desarrolló el Currículo de Entrenamiento para Asistencia en el Apoyo del Comportamiento Positivo para Profesionales de Apoyo Directo, a través del Departamento de Servicios de Desarrollo de California. Scott es miembro de la Junta Directiva de TASH de California y Presidente de la Comisión de Alcaldes de Santa Clarita para el Empleo de Personas con Discapacidad.

2 CONVENCIÓN ANUAL DEL NDSC 19 AL 21 DE JULIO, 2013 DENVER, CO PRE-CONFERENCIA I Proceso evolutivo de la afectividad y la sexualidad en personas con síndrome de Down Beatriz Garvía, Psicóloga Especialista en Psicología Clínica Centro Médico Down, Fundación Catalana Síndrome de Down, Barcelona. España Dra. Teresa Aguilasocho Montoya, Médico Gineco-Obstetra, Presidenta de la Fundación Síndrome de Down de Nuevo León A.C., Monterrey, N.L. México La vida afectiva y sexual de las personas con síndrome de Down está sometida a una serie de mitos, prejuicios y fantasmas que inquietan a familias y profesionales. Pero no dejan de ser eso: prejuicios y miedos, porque la sexualidad de la persona con síndrome de Down es sexualidad humana, no es una sexualidad especial, no existen diferentes sexualidades. La sexualidad y la afectividad son dimensiones de la personalidad que están presentes en el comportamiento, son funciones biológicas y afectivas. Objetivos: Ofrecer herramientas de todo tipo para poder entender, abordar y posicionarse ante la sexualidad de las personas con síndrome de Down. Reflexionar acerca de la ansiedad que produce el tema en familias y profesionales. Se abordarán las relaciones afectivas, la respuesta sexual, las dificultades en el abordaje, la educación sexual, los aspectos legales, la familia, etc., pero, sobre todo, cómo vive la sexualidad la persona con síndrome de Down Sobre las Ponentes: Beatriz Garvía Licenciada en Psicología desde el año 1977, Especialista en Psicología Clínica y Psicoterapia. Desde el año 1978 trabaja en detección y tratamiento de los problemas de salud mental en la población en general y de las personas con Discapacidad Intelectual. En 1989 se incorporó a la Fundación Catalana Síndrome de Down, como psicóloga clínica del Centro Médico Down. Un año más tarde asumió la función de Supervisora institucional a las de Coordinadora de Atención Terapéutica y forma parte del Comité de Formación y de la unidad de Síndrome de Down y enfermedad de Alzheimer. Ha participado, como docente y tiene publicados artículos en revista médicas y dos libros, uno de ellos todos ellos referentes a las relaciones afectivas y sexualidad de las personas con síndrome de Down. Vive en Barcelona, España Teresa Aguilasocho estudió medicina en la Universidad Autónoma de Guadalajara y posteriormente se especializó en Ginecología y Obstetricia en Houston, TX. Desde hace 17 años su vida entera ha sido dedicada en mayor parte al desarrollo de las personas con síndrome de Down. Cecilia, quién era la tercera de sus cuatro hijas y ha fallecido, tenía síndrome de Down. Desde entonces, sus inclinaciones médicas se combinaron con las pedagógicas. La Dra. Aguilasocho creó la Fundación Síndrome de Down de Nuevo León, A.C. en el 2008 y actualmente es la presidenta. Vive en Monterrey, México.

3 NATIONAL DS CONGRESS CONVENTION JULY 19-21, 2013 DENVER, CO PRE-CONFERENCE SESSIONS 2013 Pre Conference Sessions Pre-conference sessions give you the chance to spend 4.5 hours with a nationally-known speaker and dig deep into one specific topic. The sessions are structured to share best practices, provide content that is research-based, and proven how to strategies. All sessions will include time for Q & A. Pre-con s will be held on Friday, July 19 from 8:00am to 12:30pm. Separate registration is required. Coffee and pastries will be provided. Pre-conference handouts are only issued to the person registered for the session. Space may be limited in some sessions, so register early. On-site registration cannot be guaranteed. PRE-CON A: DS Parenting 101: The Straight Scoop, with Tools and Rules Natalie Hale, educator, author, founder of Special Reads for Special Needs, Mother of a Son with DS, Los Angeles, CA This session will be presented by the author of the new book, "DS Parenting 101: Must-Have Advice for Making Your Life Easier." Natalie Hale will cover the gamut of an extraordinary parenting journey, from a child's birth to independent living. Special attention will be given to understanding oppositional behaviors and learning the tools for parenting those behaviors. This session will include a parent panel, roleplaying, and short videos, as well as a "Non-Compliant Tool List." As one parent has said, "I can't get this kind of information anywhere else in this country. Standard parenting books fall way short for me." This unique session gives hard-won tools and insights which can make our parenting lives smoother and even more rewarding. PRE-CON B: Try Reading Again or for the First Time DeAnna Horstmeier, Ph.D., Author, Mother of a Son with DS, Worthington, OH Do you have a struggling student who has given up trying to read, or pretends to read, or who has some sight words but can t figure out new words? Does that student protest that the books are babyish or just boring? DeAnna Horstmeier will present a savvy method for teaching beginning reading tailored to the interests and vocabulary of upper elementary and secondary students. The Try Reading Again method consists of three important components: stories written in the student s own language (language experience), phonics, and age-appropriate structured stories (written by others). Participants will walk away with new strategies to make reading a reality. PRE-CON C: What Autism Looks Like in a Child with DS Susan Hepburn, PhD, Associate Professor, University of Colorado School of Medicine, Director of Research for JFK Partners, University of Colorado School of Medicine, Aurora, CO This presentation will explore the connection between DS and Autism and provide a variety of resources to help navigate this complex diagnosis. Participants will learn how behavioral

4 PRE-CON C: (Con't) characteristics intersect to create unique challenges for screening and evaluation, as well as implications for intervention. Dr. Hepburn will provide an overview of the differences in behaviors presented with a cooccurring diagnosis and most importantly allow time for questions from participants. PRE-CON D: Developing a Good Foundation for Speech and Language: Birth to First Grade Libby Kumin, Ph.D., CCC-SLP, Professor of Speech-Language Pathology and Author, Loyola University, Baltimore, MD The session will focus on building strong foundations for the development of communication skills in children with DS from birth to first grade. What are the differences between communication, language and speech? What prepares your child to speak? How does your child progress from sounds to words to conversation? Dr. Kumin will describe, and demonstrate examples of activities you can do at home for communication, language and speech skills that children need to master. Transitional systems to promote communication and language before your child begins to speak and activities to expand speech and language once your child begins to speak will be addressed. Dr. Kumin will teach you about a model for classifying the different types of language that your child needs for school and techniques for identifying and working on those skills. We will also discuss effective techniques for working with teachers and speech language pathologists in preschool and elementary school settings. PRE-CON E: Curriculum, Visuals, Behavior Are You Sure This Child Can Be Included? Patti McVay, M. ED., Director of Education, Linda Crnic Institute for DS, Anna & John J Sie Center for DS, Instructor, Department of Pediatrics University of Colorado School of Medicine This session will examine key ways for students to become true participating members of their general education classroom. Participants will learn how to make modifications and accommodations that can benefit multiple students in the classroom. It will also look at how visuals support success and learn another process and perspective to ensure behavior is not a barrier for inclusion. This session will include parent perspectives and time to develop plans to support your child or student using inclusive best practices. PRE-CON F: Doing the Detective Work to Create Positive Behavior Change Scott Shepard, Director of Avenues Supported Living Services, Professor at CSU Northridge, Cal-TASH Board Member, Valencia, CA (Con interpretación simultánea al español) Positive behavior change is possible! This session will lead you to discover why your child behaves a certain way and more importantly how you can make positive changes. Participants will receive an overview of functional assessment, learn how to identify behavioral motivations, how to identify and teach replacement behaviors & skills as an alternative to challenging behavior; and will take home a variety of tools to get you started on the right path. These principles can be applied with children and adults of all ages.

5 PRE-CON G: Self-Promotion: A Good Idea for Your Health Brian Chicoine, MD, Medical Director, Adult DS Center of Lutheran General Hospital, Park Ridge, IL and Dennis McGuire, PhD, Director Psychosocial Services, Adult DS Center of Lutheran General Hospital, Park Ridge, IL and Christine Maxwell, Self Advocate, Evanston, IL Good health is both a gift and a process. Optimizing both mental and physical health requires active participation in that process. As the world expands for people with DS, there is both opportunity and challenge to improve health. Health promotion for adolescents and adults with DS will be addressed. This session will provide special emphasis on self-promotion of health by people with DS. The presenters include a self-advocate, a doctor of social work, and a medical doctor. PRE-CON H: The Joy of Work: How Finding a Job and Starting a Career Can be FUN! Amy Dwyre, Senior Associate, TransCen, Inc., Sister to a Brother with ID, Rockville, MD There is a job out there for anyone who wants one, regardless of disability, need for support, or economic vitality of a community. But more importantly, the journey to a career can be fun and exciting! This session will teach strategies that families and jobseekers themselves can use to jumpstart the job search process and help case managers do a better job. After this session, participants will understand the importance of the individual discovery process, how to approach and partner with businesses, how to negotiate and customize an awesome job position, and how to stay focused on a career path. Participants will also walk away with the start of an individualized "Positive Personal Profile" and a personalized marketing script! PRE-CON I: Proceso evolutivo de la afectividad y la sexualidad en personas con síndrome de Down Dra. Teresa Aguilasocho Montoya, Médico Gineco-Obstetra, Presidenta de la Fundación Síndrome de Down de Nuevo León A.C. Monterrey, N.L. México y Beatriz Garvía, Licenciada en psicología, Fundación Catalana de Síndrome de Down, Barcelona, España La vida afectiva y sexual de las personas con síndrome de Down está sometida a una serie de mitos, prejuicios y fantasmas que inquietan a familias y profesionales. Pero no dejan de ser eso: prejuicios y miedos, porque la sexualidad de la persona con síndrome de Down es sexualidad humana, no es una sexualidad especial, no existen diferentes sexualidades. La sexualidad y la afectividad son dimensiones de la personalidad que están presentes en el comportamiento, son funciones biológicas y afectivas.

6 PRE-CON J: Affiliates LEAD 101: A Basic Foundations Workshop for Leadership, Education, Advancement and Direction Designed specifically for local DS organization leaders (both volunteer and staff) who may be new to the world of non-profits or whose organization is relatively new. We ll start the day with a presentation on communication: social media, marketing, blogging you know, what all the cool kids are doing! Then we ll go really interactive, and spend our time networking and sharing your ideas and concerns through a table top graffiti session. LEAD 101 will leave attendees inspired and motivated! PRE-CON K: Affiliates LEAD 201: A Beyond the Basics Workshop for Leadership, Education, Advancement and Direction Keeping in mind the more seasoned non-profit leader, this session will address topics beyond the basics. Along with attendees from the LEAD 101 session, we ll start the day learning more about the importance of communication: social media, marketing, blogging and how to move our message beyond the basics. Next, we ll hear from non-profit professionals on critical areas such as financial oversight and strategic thinking. LEAD 201 will also provide the opportunity to network with other experienced DS organization leaders.