Advocacy/Support

05 What Your Other Children are Thinking: Sibling Issues

Brian Skotko, MD, MPP, Clinical Genetics Fellow, Down Syndrome

Program of Children’s Hospital Boston, brother of a sister with DS, Boston, MA, and Susan P. Levine, MACSW, Social Worker, Family
Resource Associates, Shrewsbury, NJ

Through discussion and a series of interactive exercises, parents will explore the questions, needs, and concerns often raised by children who have a brother or sister with DS. Parents and professionals will come away with practical answers to commonly raised questions. This presentation draws upon Brian Skotko’sand Sue Levine’s publication in the American Journal of Medical Genetics and their new book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters.

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28 My Kid has More Chromosomes Than Yours! Positive Outcomes in Parenting a Child with DS
Briana S. Nelson Goff, PhD, Professor, Family Studies and Human Services, Kansas State University, mother of a son with DS, Manhattan, KS and Nicole Springer, PhD, Department of Applied and Professional Studies, Texas Tech University, mother of a daughter with DS

This workshop will describe results from a national study with parents that explores the journey to resilience and hope experienced by families with a child with DS. The workshop will describe key resilience factors in families who have successfully navigated this life transition and provide important information and resources for families who may be beginning their journey. Because the mainstream publications in this area often are not empirically-based and many of the books provided to new parents are medically-based and difficult to comprehend while coping with the news of their child’s diagnosis, this workshop will specifically address evidence of the positive outcomes parents experience. We will specifically include participant discussion of relevant resources that have benefitted parents in their journey, and will assist new parents in the early stages of this journey to identify and advocate for their needs as well as their child’s.

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30a The Surprising Role We All Can Have in Shaping the Future of DS –Part 1
Mark W. Leach, JD, Down Syndrome of Louisville, father of a daughter with DS, Louisville, KY

As a parent, family member, educator, professional, or someone interested in Down syndrome, we each can have a role in shaping
the future of DS. Prenatal testing advances are only continuing to progress, but with surprising results. While studies have wondered whether DS would disappear, other studies have reported the number of births remaining the same, and even rising in the United States. This presentation will explain how both of these impacts are possible. It will also share how we each can have a role to play in responding to the needs of expectant mothers and the medical professionals that serve them. Because if we do not respond to this need, who will? Come and learn how you can have a role in shaping the future of DS.

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30b The Surprising Role We All Can Have in Shaping the Future of DS –Part 2

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38 Start a “Cool Club” Social Club for Teens and Adults
Sandra McElwee, mother of a son with DS, Rancho Santa Margarita, CA

Every teen and adult with DS deserves the same rich social life everybody else enjoys. Learn how to facilitate the fun by partnering with other parents and caregivers to create a social club that has one activity EVERY weekend! You will learn how Cool Club started and be equipped with the information and tools to start a club for your teen or adult.

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 41a The Power of Empowerment –Part 1
Nancy Gianni, Founder and CEO, GiGi’sPlayhouse, mother of a daughter with DS and JenniVon Tobel, Executive Director, GiGi’sPlayhouse, Hoffman Estates, IL

This workshop will discuss how raising expectations of individuals with DS can empower parents, individuals with DS and the local
community. Together, we will learn how to turn belief of your child’s potential into action in your home and community. The end result is a home, school system, and community that upholds the high expectations you have for your child/adult. You will come away with
a variety of tools and resources that you can implement and utilize in your local community.

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41b The Power of Empowerment –Part 2

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42 Introduction to D.A.D.S.: What it is and Why it Started
Joe Meares, John Goodrich, Ted Scofieldand Jeff Huffman, D.A.D.S. National, all fathers of children with DS

D.A.D.S. started in 2002 with eight fathers who needed to fill a void. Find out how this void was filled for many fathers, how D.A.D.S. works within your local parent affiliate group and how to get connected with other fathers from around the country for support, fellowship and action.

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56 Becoming D.A.D.S.: Making it Work
Joe Meares, John Goodrich, Ted ScofieldandJeff Huffman, D.A.D.S. National, all fathers of a children with DS

This workshop is specifically for fathers who are already involved in a local D.A.D.S. chapter. We will hear successes and challenges from D.A.D.S. groups and discuss strategies that are proven to add quality programming content, build recruitment and build the connection with your family support group. D.A.D.S. National will share examples of implementing the foundational pillars of D.A.D.S.,
support, fellowship and action. If you are a member of a D.A.D.S. group or especially if you are a leader —this is a can’t miss
workshop.

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61 Self Advocacy Through the Voices of Canadians
Kirk Crowther, Executive Director, Canadian Down Syndrome Society

This workshop will demonstrate how an organization can effectively include the voices of self advocates. The Canadian Down Syndrome Society Voices at the Table Advocacy (VATTA) has demonstrated how a group of 12 self advocates (adults with DS) can affect supportive changes to an organization and create new visions with a focus on personal perspectives. The role advocates play in directing the work of an agency or organization is identified. The VATTA committee has demonstrated strategies for self advocates and organizations that want to include people with DS in their work.

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