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UDSF Conference 2016

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Thanks for everyone who attended our conference. In case you weren't able to attend we have a few presentations available, email us at info@udsf.org

 

 

 Speaker Biography's 

Kelle Hampton, writer and photographer who lives in Naples, Florida with her husband, three children and two stepsons, will be our keynote speaker. She will talk about her experiences both as a mother and as a national spokesperson for Down syndrome. Her heartfelt blog post, relating to the birth of her daughter Nella and her surprise diagnosis of Down syndrome, led to the writing of Bloom, a 2012 best-selling memoir. From personal style and kids' activities to reflections on motherhood, family, faith and special needs, Kelle explores a variety of topics on her blog, Enjoying the Small Things. She remains an avid celebrant of the fact that women are a great many things.

 Jay Evensen is the Senior Editorial Writer for the Deseret News. An outspoken advocate for Utahns with special needs, Jay has penned several works during the last year that specifically relate to people with Down syndrome. (His latest appeared in the October 2 edition of the paper.) Last winter he spoke to UDSF officials at their annual meeting. He so impressed the group they invited him to address the Foundation's constituents in this general session. Don't miss what he has to say about societal changes regarding disabilities and what you can do to eliminate stereotypes and prejudice. Find out how to replace them with acceptance, inclusion and accommodation by simply telling your compelling story.   

 Attendees will also hear from Kristen Anderson on “Wandering and Safety – Beyond Strollers and Baby Gates.” This is a concern of families of younger children. But it is also important that everyone has this information as we interact with those who have the tendency to wanderer. Kristin and her husband, Steve, live in Sugarhouse with their kids Piper and Max. They adopted Max out of San Antonio, Texas when he was five weeks old. Max learned to walk at 23 months, and was running about a week later! He is a "professional escapee" so Kristin has had to implement strategies to keep him safe at home, school, and out and about. She'll share many of the tips and tricks she has learned to keep Max safe.

 Afternoon Workshop Descriptions and Presenter Biographies

Session 1 (1:00 pjm)

Practical Approaches for Protecting Your Children from Abuse, Hildegard Koenig and Nonie Lancaster

This session teaches parents to recognize different types of abuse, where to report abuse, ways to reduce risks, and how to access resources. While the topic may be distressing, all parents need this information. This is particularly true for parents of children with disabilities as the rate of abuse is especially high among this population. 

Hildegard Koenig, Empowering a Better Life, emigrated from Venezuela to Utah with her family as a teenager. She is now a U.S. citizen. She obtained her Paralegal Certificate from Weber State University. Thereafter she began her career at the Legal Aid Society of Salt Lake City working closely with victims of domestic violence. This helped stoke an already burning passion for giving voice to those who have been silenced and allowed her to stand for human rights issues. She has worked for the YWCA of Salt Lake City, at the Salt Lake City Prosecutor's Office as the Diversity Witness Coordinator, the Salt Lake County District Attorney’s Office and as the Diversity Coordinator for the Utah Domestic Violence Coalition. She is currently employed by the Salt Lake City Mayor’s Office. Hilde has extensive experience providing training on abuse and obtaining assistance and finding resources.

 Nonie Lancaster is a person with a disability who provides training on violence prevention and disability issues. She is the co-founder and principal consultant of Human Capabilities, a disability awareness consulting agency. Nonie has provided extensive training on abuse, self-advocacy, interacting with people with disabilities, and more. She previously worked as an advocate for the Disability Law Center, an outreach and benefit specialist for Utah Work Incentives, a program coordinator for the Utah Governor’s Council for People with Disabilities, and a quality enhancement interviewer for the Division of Services for People with Disabilities.  

 Parent to Parent Workshop, Amber Merkley

 This session is for any parent interested in serving as a peer parent volunteer in the community. Find out about the current organization of this project and how you can support local families. Learn how to be involved with the UDSF newborn gift baskets initiative as a family or community service project, too.

Amber Finlinson Merkley is the Family Support Coordinator for UDSF. She is married to Justin and they have three beautiful children: Morgan (14), Wyatt (10) and Finneas (2).  Finn was diagnosed with Down syndrome prenatally at 15 weeks.  The Merkleys contacted UDSF and after a fantastic experience with their peer parent, they immediately decided they wanted to serve welcoming other new parents/families to the wonderful world of Down syndrome. The Merkleys claim to have the best "job" ever!

 Resources, Care Coordination and Children with Special Health Care Needs,  Eric Christensen

 Having children is exciting, exhilarating, and exhausting! Throw into the mix a special health care need, and it can be overwhelming. As parents navigate a very complex physical health, behavioral health, social service, and support service network, they're often faced with more questions than answers. Join Eric Christensen, Program Manager of the Integrated Services Program at the UtahDepartment of Health as he gives pointers to families facing a complex system. He'll discuss care planning and coordination,community agencies that want to help families, and planning for transition to adulthood.

 Eric Christensen, manager of the Integrated Services Program at the Utah Department of Health, was born and raised in the Salt Lakearea. He graduated from the University of Utah with a B.A in Spanish Language and Literature and completed his Master’s Degree in Public Health at Walden University. He has worked in health care administration since 1991 as an eligibility counselor, Baby Your Baby specialist, a program and protocol developer, certification specialist, clinic manager, and program manager. He's worked with perinatal populations, HIV/AIDS patients, emergency 911 paramedics, and children with special health care needs. He enjoys partnering with families, children, and youth and helping to find community resources to meet their needs. He believes families are empowered when they are given multiple good options from which to choose. Eric is married and the father of three adult children.

 Mental Health Issues and Transitioning into Adulthood, Anne Kennedy

 Review methods to support young adults with mental health issues such as anxiety disorders, depression, and obsessive-compulsive disorder. Discuss strategies for facilitating increased independence and a healthy transition to adulthood.

 Anne Kennedy, MA BCBA is the Behavior Director of RISE. She has over a decade of experience working in the behavior analytic field and believes every child can be successful. She recently returned to Salt Lake City after working in Asia for four years. As one of two Behavior Analysts in China, she worked with private clients all over Asia and served as Special Education Director for the first inclusive school in China. 

Session 2 (2:15 pm)

Using Social Media and Other Ways to Tell Your Story, Sharae Chisholm, Alan and Nikki Lawrence and Kelle Hampton

 Learn to talk about Down syndrome, your child and your life as a parent in social media and other venues. The impact of marketing will be discussed as well as examples from parents who all have children with Down syndrome.

 Sharae Chisholm is a professional marketer. She's been involved with the branding and marketing of UDSF. She is married and the mother of three children. Her daughter, Leah, is half of a set of twins and has Ds. She started first grade this year. She believes inclusion comes as parents share stories that show our children with Down syndrome are more like other youngsters than they are different from them.

 Nikki and Alan Lawrence were married in 1995. They are the parents to six children. When their fifth child, Wil, was born with Down syndrome, their life and focus completely changed. Alan started "That Dad Blog" hoping to inspire others to find joy in every opportunity of life. He then started a photography project called "Wil Can Fly" to show that despite disabilities or challenges -- if given the opportunity -- children with Ds can do just about anything. They hope as they share their family's day-to-day life it will raise awareness and acceptance. They love being a part of the Down syndrome community.

 Kelle Hampton. See bio at the top of this sheet.

 Financial Planning Across the Life Span, Hank Warner

 Money is not a favorite topic. But when you have a child with special needs it is very important to understand the financial planning needs of your family. And these needs change over time. This class will provide an overview of the life span as well as information about ABLE accounts which should be available soon. Individuals with Down syndrome may qualify for government programs at different times during their lives. It is important to understand how these programs impact your child and financial preparations for the future. Appropriate planning helps avoid costly errors insures your child will be cared for after your death.

 Hank Warner is a financial planner by day and a husband and father of seven the rest of the time. His youngest daughter has Down syndrome, so this topic is both professional and personal for him.

 Adopting a Child with Down Syndrome or ‘Love Makes Miracles,’ Jeana Bonner, Kecia Cox and Julie Simpson 

Whether you are interested in adopting someday or just want to experience a little bit of the miracle of adoption, attend this class. It will definitely touch your heart -- and may make you cry.

 Jeana Bonner is mother to a biological daughter (Kaelyn, age 7) and an adopted daughter (Jaymi, age 9). Both have Down syndrome.  When Kaelyn was almost three years old, the Bonners started a year-long process to adopt Jaymi from a Russian orphanage. She was given up at birth solely because she had Down syndrome.

 Kecia Cox, mother of seven, never imagined her family’s story would include three children with Down syndrome. Kecia's world changed with the birth of her third child, Bree, who was born with Ds. When Bree was four, the Cox family started an unforgettable journey to another four year old girl who was given up at birth in Ukraine because she had an extra chromosome. Once Mia was home, the Cox family was surprised to learn they were expecting twins. Having six girls, two of whom had Down syndrome, the Cox family thought their family was complete...until last fall when they discovered Noah; a baby boy with Ds in Ukraine. They knew he was the next chapter of their story.

 Julie Simpson, mother of five, began her adventure with Down syndrome 14 years ago with the birth of her daughter, Alexis. That day, a door was opened in the hearts of the Simpsons that would lead to their decision to adopt Ansley (18 months old) in 2015. Ansley was born in North Carolina and placed by her loving family in an open adoption. Adopting Ansley was a huge leap, of faith but the biggest blessing ever for the Simpson family. 

 Behavior Management and Skill Building Strategies for Young Children, Anne Kennedy

This workshop will review the research and training methods for helping young children build developmentally-appropriate skills. The focus will be on strategies for supporting young children with special needs.

 Anne Kennedy. Refer to the biographical information in Session 1.

 Session 3 (3:30 pm)

 Inclusion: We’re All in this Together, Sonja Hammond            

Inclusion provides opportunities for students with disabilities to learn alongside their non-disabled peers in general education classrooms. Establishing a successful inclusive classroom varies in complexity, and must be individualized to each student’s needs. Parents and teachers working together is vital for overcoming obstacles which may emerge. Understanding the issues, benefits and challenges of inclusion enables parents to advocate for their student in the IEP process.

 After growing up with a brother with Down syndrome and participating in his school experience, Sonja Hammond pursued a degree in Special Education from Utah State University. She was a Special Educator for 17 years, in settings varying from a self-contained classroom to a full inclusion setting. She began working with Utah Professional Development Network (UPDN) in July and is able to assist school teams around the state to achieve improved outcomes for students with disabilities. She lives in Davis County with her husband, three children and two dogs. 

Helping Your Child with Down Syndrome Prepare for a Job, Lori Neel

 It is never too early -- or even too late -- to start preparing your child for the world of work. This class will provide ideas for work and other skills which are important to be successful, whether that is in a full-time job, part-time job or even a volunteer role. It will also include community resources to help prepare for, and obtain, employment.

Lori Neel is a Development Counselor at Deseret Industries where she helps associates learn job skills, obtain training and be successful in employment. She is passionate about helping people -- from many different life experiences -- develop job skills and become employed. She is currently a student in a master of Social Work program at Utah State University. She is the mother of an adult son.

Down Syndrome and Autism – When Holland Starts to Feel More Like Zimbabwe…, Kristin Anderson, Todd and Jana

Wangsgard, Lillian Adolphson, Amy Call

 Sometimes unexpectedly, a child with Down syndrome may face additional challenges of an autism spectrum disorder. It can be a complicated process for families to figure out their child and get help from schools and the community. Two families will share parts of their journeys and two professionals will give guidance about things to do if you find yourself in this complicated situation. If you have a child with this dual diagnosis, or are worried about it, this is the class for you. You are not alone.

 Kristin Anderson adopted her son, Max, as an infant. She will share her experience and hopes to connect with other families who have a child with Down syndrome and a little something extra extra.

 Todd & Jana Wangsgard live in Pleasant View, Utah with their four children; Conner, 16, Dawson, 13, Jayci, 11 and Bridger, 8. (Their youngest has Ds and Autism). They are sharing their story with hopes to connect with others going through a similar set of circumstances.

 Lillian Adolphson’s experience in the field of special education began as a volunteer at the age of 14. She has a Bachelor’s Degree in Psychology, as well as a Master’s, and a Ph.D. in Special Education. Lillian is a doctoral level, Board Certified Behavior Analyst and has worked extensively in this field. She currently works at Utah Behavioral Services.

Amy Call’s interest in Applied Behavior Analysis (ABA)  initially stemmed from working with her own developmentally-challenged child. When she saw his data-driven positive outcomes, as well as those of other children, she immediately began research in the field. This led her to pursue certification with the goal of extending the benefits of ABA to other families of children with similar needs. She is an intern at Utah Behavioral Services.       

Siblings Panel

Listen to teens and young adults talk about their experiences having a sibling with Down syndrome. They will share a bit about their family and their sibling with Ds and then be open to field questions. If you have wondered about the effects of Down syndrome upon your other children (or future children), come and enjoy this session.

Gathering Times

Three "Gatherings" will be held during the conference. They are designed so you can meet others with common interests, informally connect and share.

 Parents of Teens and Adults with Down Syndrome, Eric and Vicki Ehlen and Mikinsie Clark (2:15 pm)

 This gathering is designed to accomplish two things:

  • Find out what types of supports you need during this stage of your child’s life
  • Assess interest in UDSF Cluster Groups. Mikinsie Clark is interested in starting a cluster group in the Herriman area where her sister lives. This would be a small gathering of teens or adults (16 years and older) who would meet monthly for some sort of social activity. In what other areas could cluster groups prove beneficial and successful?

 DADS and Pie, Hank Warner (3:30 pm)

 The title says it all. Hank may also discuss D.A.D.S. (Dads Appreciating Down Syndrome), a national program sponsored locally by UDSF.

 Families Who have Adopted or are Thinking about It, Jeana Bonner and Kecia Cox (3:30 pm)