Agenda

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  • Wednesday, July 11, 2018
  •  
    9:00 AM  -  4:00 PM
    IEP Drop-in Clinic: By Prior Appointment  (IEP Drop)
    Bristol Room: 3rd floor

    Throughout each day there will also be an IEP "Drop in" Clinic where you can schedule a private appointment with an experienced advocate to review your child's current IEP. Sign up for a free 45 minute one-on-one session with advocacy experts to review your child’s IEP and get general suggestions for making current goals stronger, more appropriate goals to add, requesting services, etc. Sessions are available throughout the day, every day! If you are planning to attend the Convention, please pre-register your scheduled advocate session: Sign up here

    Note: adding this to your agenda on the app does not mean you are signed up for these sessions.
     Optional 
    9:30 AM  -  11:00 AM
    New Family Welcome Reception: Prior Registration Required
    Harborside DE

    New to convention? Join us and learn the tips and tricks and connect with seasoned families who can answer any questions you may have--we'd love to see you there!
     Optional 
    11:00 AM  -  12:30 PM
    Bee Strong Therapy Initiative Overview: Prior Registration Required
    Raven
    Join us for a special introduction to the brand new Bee Strong Therapy Initiative. Initiative experts in physical therapy, occupational therapy, aqua therapy and more will explain what you can expect from the special workshops and evaluations that will be presented throughout the convention. Links to sign up for this were sent out--please note that adding this to your agenda via the app does not equate pre-registering.
     Optional 
    11:45 AM  -  12:45 PM
    Lunch and Learn Sessions Wednesday: Prior Registration Required
    Harborside DE
     Optional 
    1:00 PM  -  1:30 PM
    Convention Opening Welcome
    Harborside C
     Optional 
     

    Keynote

    1:30 PM  -  2:45 PM
    (Friday, July 13, 2018)
    Opening Welcome and Keynote  (Audience: All)
    Harborside C
    Join us for an overview and welcome, hints about our new app, and our keynote speaker Michael Porath. Mike will discuss the different communities that parents of individuals with WS need to create/join in order to successfully navigate the changing journey that they will be on throughout their child’s lifetime.
    Speakers:
     Optional 
     

    Awareness

    3:00 PM  -  4:15 PM
    The Boy Who Loved too Much  (All)
    Waterview AB
    Join the author and subjects of this wonderful book for conversation and Q&A about their shared journey over three years of research and the writing of the poignant story of "Gayle and Eli."
     Optional 
     

    Employment

    3:00 PM  -  4:15 PM
    Adults with WS: Obtaining Good Jobs and Benefits  (16+)
    Harborside D
    Educational and employment options for young adults. This session will discuss ways to navigate the system and think outside the box to achieve success.
    Speakers:
     Optional 
     

    Education/Law

    3:00 PM  -  4:15 PM
    Being Your Child's Champion: Advocacy Tools and Legal Framework for Your School-age Child  (School age)
    Harborside E
    This session will provide an overview of FAPE, LRE and other special education law essentials. It will also include the top 10 tips and best practices for successfully advocating for the placement, supports, and related services your child needs (and is entitled to!)
     Optional 
     

    General Info.

    3:00 PM  -  4:15 PM
    General Overview of WS for Spanish Speaking Families  (Spanish Speakers)
    Falkland
    This session will be conducted in Spanish. There will be follow-up round table discussions on specific topics as needed.
    Speakers:
     Optional 
     

    Futures Planning

    3:00 PM  -  4:15 PM
    I Don't Know What I Don't Know: How Can I Plan for the Future?  (All)
    Harborside C
    A facilitated conversation with medical, behavioral, transition and financial specialists will help you "be prepared" for the future.
     Optional 
     

    Physical Therapy

    3:00 PM  -  4:15 PM
    Loosen Up: How to Prevent and Manage Joint Contractures in Teens and Adults using a PT approach  (13+)
    Waterview CD
    This interactive session will cover the who, what, where, when, why and how of joint contractures and teach you how to prevent and manage them.
    Speakers:
     Optional 
     
    7:00 PM  -  9:00 PM
    Opening Night Reception/Kick-Off
  • Thursday, July 12, 2018
  •  

    Medical

    8:45 AM  -  10:00 AM
    Common Endocrine Issues in Adults with Williams syndrome  (18+)
    Harborside E
    Many adults with WS have issues with obesity, bone health, and glucose. This session will discuss the signs and treatments for each.
    Speakers:
     Optional 
     

    Advocacy

    8:45 AM  -  10:00 AM
    Building a Critical Support Network  (10 and under)
    Harborside D
    WSA moms will discuss the "whys" and the "hows" of building a support network in your community, which includes the Special Ed Director, School Superintendent, ISD officials etc.
     Optional 
     

    Research

    8:45 AM  -  10:00 AM
    Williams syndrome Research Today and Tomorrow  (All)
    Harborside C
    Members of WS Research community will talk about research trends today and what might be on the horizon for tomorrow.
    Moderators:
     Optional 
     

    Community

    8:45 AM  -  10:00 AM
    Insights from Japan for Williams syndrome: A Unique Challenge in Language Arts and Mathematics  (Teens +)
    Essex AB
    Despite their strength in language performance and sociability, it is rare that individuals with WS pursue language-related jobs. In this session we analyze what should be supplemented to their linguistic and social intelligences, using Japanese traditional language arts and math instructional methods, demonstrating two attempts targeted for teens with WS: develop unique skills to play picture-story shows and learning how to count on an abacus using the thumb and index finger only. The attendees will have an opportunity to practice, assisted by the Japanese team.
    Speakers:
     Optional 
     

    Education

    8:45 AM  -  10:00 AM
    Admission Granted: But Leave Your IDEA at the Door  (18+)
    Harborside A
    Before your son or daughter leaves for college it is important to understand the types of accommodations and supports that will be provided and how they differ from those provided in the K-12 system. Most importantly, parents must understand that the procedural rights and safeguards afforded to students through IDEA are not mandated in post-secondary settings. This presentation will discuss some of the recent difficulties individuals with WS have experienced including issues with Title IX.
    Speakers:
     Optional 
     
    IEP Drop-in Clinic Thursday: By Prior Appointment
    Bristol Room: 3rd floor

    Throughout each day there will also be an IEP "Drop in" Clinic where you can schedule a private appointment with an experienced advocate to review your child's current IEP. Sign up for a free 45 minute one-on-one session with advocacy experts to review your child’s IEP and get general suggestions for making current goals stronger, more appropriate goals to add, requesting services, etc. Sessions are available throughout the day, every day! If you are planning to attend the Convention, please pre-register your scheduled advocate session at http://www.wsa2018-advocates.com/ NOTE: simply adding this session to your schedule in the app does not equate registering.
     

    Medical

    10:20 AM  -  11:35 AM
    Common Endocrine Issues in Youth with WS  (12 and under)
    Harborside E
    Thyroid problems, slow growth and puberty issues are common in Williams syndrome. Learn the signs, symptoms and treatments.
    Speakers:
     Optional 
     

    Therapy

    10:20 AM  -  11:35 AM
    Putting Fun in Functional Aquatics  (6 and under)
    Essex AB
    Join us to learn how activities in the water can help your child's stamina, coordination and overall health.
    Speakers:
     Optional 
     

    Research

    10:20 AM  -  11:35 AM
    Current Research on WS  (All)
    Harborside C
    Current WS researchers will present mini-platform presentations on their current research studies.
     Optional 
     

    Community

    10:20 AM  -  11:35 AM
    Improving Lives through Sports: Special Olympics and WS Community  (6+)
    Harborside D
    Come to hear about how sports participation and other activities with Special Olympics has been improving the lives of individuals with Williams Syndrome. Learn about integrated Special Olympics Young Athletes Program, Athlete Leadership Programs (ALPs), Unified Sports and other programs positively impacting athletes from two years of age to 88+, as well as their families. Attendees will meet Michael Heup, an individual with Williams syndrome, and his family and hear their story about how Mike's involvement with Special Olympics and how his participation in ALPs has helped him develop the skills to prepare him for where he is on the world stage. Heather O'Connell and her teenage daughter Delaney, both of whom are very involved in Special Olympics in New Jersey, will also be adding to the session.
     Optional 
     

    Criminal Justice

    10:20 AM  -  11:35 AM
    Helping Justice System Professionals Understand Your Sons and Daughters  (16+)
    Harborside A
    It is very important to help justice system professionals understand our adult sons and daughters with WS. Learn how to build introductions and interactions for your son or daughter with local police.
     Optional 
     
    11:45 AM  -  12:45 PM
    Thursday Lunch and Learn Sessions
    Grand Ballroom 6
     Optional 
     

    Fitness

    1:00 PM  -  2:15 PM
    Helping the Adult with WS to "Balance Their Bodies"  (16+)
    Harborside E
    Fitness expert, Jim Guimond will present a proven fitness regimen for adults with Cognitive Challenges that is easy to do at home or with a fitness coach (this program will also be presented to the adults with WS and a video will be provided).
    Speakers:
     Optional 
     

    Medical

    1:00 PM  -  2:15 PM
    Top 10 General Medical Issues in Children with Williams syndrome  (under 12)
    Harborside D
    How much does your child's doctor know about Williams syndrome? Members of the WSA's medical advisory team will discuss the common issues and treatments that every doctor of a patient with WS should know.
     Optional 
     

    Therapy

    1:00 PM  -  2:15 PM
    Melodies for Growth: Music Therapy for Individuals with WS  (under 12)
    Harborside A
    An interactive session including an MT overview, research and clinical applications in school, and practical tips and applications to use at home. Case examples, IEP success stories, demonstrations and experiential learning will be included.
    Speakers:
     Optional 
     

    Cardiovascular

    1:00 PM  -  2:15 PM
    Pulmonary Surgery in WS  (under 12)
    Essex AB
    Dr. Collins will be presenting the results of pulmonary artery reconstruction in patients with Williams syndrome. The session will detail the technique pioneered and used by Dr. Frank Hanley at Stanford, and the short and longer term follow-up results of the surgical approach will be discussed.
    Speakers:
     Optional 
     

    Post-Secondary

    1:00 PM  -  2:15 PM
    Post-Secondary Options for Individuals with Williams syndrome  (16+)
    Harborside C
    The growing number of post -high school program options for students with WS is wonderful… and complicated. Join us for a conversation with program reps. aimed at helping you understand the variety of programming types and cognitive profiles served. There is something out there for everyone.
    Moderators:
     Optional 
     

    Medical

    2:45 PM  -  4:00 PM
    Cardiovascular Research Advances in Williams syndrome
    Harborside A

    Speakers:
     Optional 
     

    Writing

    2:45 PM  -  4:00 PM
    What about Writing? Beyond Handwriting and on to Composition  (School age)
    Harborside D
    Our kids are natural story tellers, but that doesn't often translate to good written composition. This session will discuss the need for students with WS to have ongoing instruction in writing composition. Best practices in instruction, instruction strategies that work, and accommodations, including AT- will be reviewed and discussed.
    Speakers:
     Optional 
     

    Behavior

    2:45 PM  -  4:00 PM
    Behavior Concerns and Challenges  (11 and older)
    Harborside E
    A Q & A session to provide ways to address common behavior issues in children 11 and older, including challenges associated with fears, phobias and anxiety in children and adolescents.
     Optional 
     

    Siblings

    2:45 PM  -  4:00 PM
    The Highs and Lows of Living with my Brother or Sister with Williams syndrome  (All)
    Harborside C
    Listen in as siblings of individuals with Williams syndrome discuss the challenges, joys, personal expectations and expectations of others--all things they confront on a daily basis.
    Moderators:
     Optional 
     

    Education

    2:45 PM  -  4:00 PM
    Your Classmate has WS: Interactive Guide to Creating a Classroom Presentation  (School age)
    Atlantic
    Have you been thinking about creating a presentation to teach your son or daughter's classmates and teachers about your child and Williams syndrome? Katie Roodvoets will walk you through the process.
    Speakers:
     Optional 
     

    Development

    2:45 PM  -  4:00 PM
    Q&A for Parents of Infants to Three Year Olds  (0-3)
    Essex AB
    Dr. Carolyn Mervis will discuss the developmental profile of infants and toddlers with Williams syndrome.
    Speakers:
     Optional 
     
    4:30 PM  -  10:00 PM
    Little Italy Block Party
     Optional 
  • Friday, July 13, 2018
  •  

    Medical

    8:45 AM  -  10:00 AM
    Important New Findings from Cardiovascular Research at NIH  (All ages)
    Harborside A
    Dr. Beth Kozel will discuss her current cardiovascular research at NIH and the findings that can change the way we treat cardio issues in WS.
    Speakers:
     Optional 
    8:45 AM  -  10:00 AM
    Is Medication the Right Intervention for My Son or Daughter?  (5+)
    Harborside B
    Dr. Chris McDougle will talk about the "right" reasons for choosing medication and the medications that are most often "right" for those with WS.
    Speakers:
     Optional 
     

    Transition

    8:45 AM  -  10:00 AM
    Transition to Adulthood Starts in Kindergarten  (4+)
    Harborside D
    The transition process can start with simple tasks and become more concrete by middle school and high school. Guard against having your child "fall off the cliff." You will gain ideas for different visions and transition activities.
    Speakers:
     Optional 
     

    Social Impacts

    8:45 AM  -  10:00 AM
    Sexual Nuance: Understanding the Concept  (18+)
    Harborside E
    Does your child understand sexual nuance? Each year, an increasing number of students with WS are enrolling in university-based programs. Join us for a frank and important session addressing sexual issues on campus, and the critical importance for preparing your son or daughter to be appropriate in a college community.
    Speakers:
     Optional 
     

    Transportation

    8:45 AM 
    Pardon the Disruption: Connected and Self-Driving Vehicles  (16+)
    This session will discuss how connected and self-driving vehicles can provide new independence for individuals with Williams syndrome… and how soon that might happen.
    Speakers:
     Optional 
     

    Estate Planning

    8:45 AM  -  10:00 AM
    Covering all the Angles of Estate Planning  (All)
    Harborside C
    Representatives from all facets of the estate planning process will participate in a moderated discussion that will offer the when, where and how's of creating a special needs trust, and how they intersect with your ABLE account.
    Speakers:
    Moderators:
    Panelists:
     Optional 
     
    IEP Drop-in Clinic Friday: By Prior Appointment
    Bristol Room: 3rd floor

    Throughout each day there will also be an IEP "Drop in" Clinic where you can schedule a private appointment with an experienced advocate to review your child's current IEP. Sign up for a free 45 minute one-on-one session with advocacy experts to review your child’s IEP and get general suggestions for making current goals stronger, more appropriate goals to add, requesting services, etc. Sessions are available throughout the day, every day! If you are planning to attend the Convention, please pre-register your scheduled advocate session at http://www.wsa2018-advocates.com/ NOTE: simply adding this session to your schedule in the app does not equate registering.
     

    Behavior

    10:20 AM  -  11:35 AM
    Behavior Issues in Young Children  (under 11)
    Harborside A
    Drs. Levine and Klein-Tasman will discuss (in a Q & A format) common behavior challenges in young children (under age 11) and successful interventions. Bring your personal questions.
     Optional 
     

    Cognition

    10:20 AM  -  11:35 AM
    Realistic Expectations for Language, Cognition and Reading for Students with WS  (school age)
    Harborside B
    WS Professional Adviser Carolyn Mervis will provide a language, cognition and reading update.
    Speakers:
     Optional 
     

    Education

    10:20 AM  -  11:35 AM
    IEPs in Action: Using the Power of Parental Input for Positive Change  (school age)
    Harborside E
    In this interactive session, we’ll show how to increase the positive outcomes and overcome the negative experiences by providing solid, evidence-based parental input to increase communication and collaboration. Please bring a printed copy of your child's IEP/IFSP and a pen or highlighter to this session.
    Moderators:
     Optional 
    10:20 AM  -  11:35 AM
    Putting Together a Team to Include and Teach Your Child  (school age)
    Essex AB
    Hear from a team that currently supports children with WS who are fully included - learn the strategies they use, and how they communicate and work together to help each child with WS achieve their potential.
     Optional 
     

    Anesthesia

    10:20 AM  -  11:35 AM
    Anesthesia Concerns for Those With Williams syndrome  (All)
    Harborside C
    What we know, what you should know and how to prepare your child's anesthesia team to take the precautions that can guard against adverse reactions to anesthesia.
     Optional 
     

    Criminal Justice

    10:20 AM  -  11:35 AM
    Pathways to Justice - It Takes a Village  (14+)
    Harborside D

    A broad overview of the issue of people with I/DD in the criminal justice system. Lessons learned at the ARC National Center on Criminal Justice and Disability, and model programs will be included. Victim’s issues, and Pathways to Justice (ARC training program) will be described as well as up to date information on how to proactively get involved as a parent/advocate.


    Speakers:
     Optional 
     
    11:30 AM  -  1:00 PM
    Lunch and Learn Conversations Friday
    Grand Ballroom 6
     Optional 
     

    Medical

    1:00 PM  -  2:15 PM
    Sleep Issues in Children  (All)
    Harborside A
    Sleep issues in young children can be troubling. Melissa Moore will provide ideas to help.
    Speakers:
     Optional 
     

    Community

    1:00 PM  -  2:15 PM
    Expectations for the Future: How Self-Driving Vehicles, Virtual Reality and More Will Change the Fut  (10+)
    Harborside B
    New VR applications are helping those with I/DD cope with anxiety, prep for surgery and more. Learn how they may help those with WS.
    Speakers:
     Optional 
     

    Education

    1:00 PM  -  2:15 PM
    Understanding the Educational Profile of students with WS  (school age)
    Harborside C
    This session will review the educational profile of strengths and weaknesses for students with WS. Understanding this profile can provide teachers and school staff with a deeper understanding of their student with WS, and help guide instructional practices and routines. Parents who have a good understanding of the profile will be in a much better position to ensure their child receives the best possible education.
     Optional 
     

    Transition

    1:00 PM  -  2:15 PM
    Transition After High School: How to Prepare and when to Begin  (18+)
    Harborside E
    Transition is a multi-step process and it is never too early to start.
     Optional 
     

    Adult Services

    1:00 PM  -  2:15 PM
    Meshing Employment Services  (18+)
    Harborside D
    Working with vocational rehab, DDS, and community agencies to secure community employment with the supports you need for success!
    Moderators:
     Optional 
     

    Physical Therapy

    1:00 PM  -  2:15 PM
    Let's Get Moving: A PT Perspective for Toddlers (Parents or Caregivers Only)  (0-3)
    Essex AB
    Helen Milligan will discuss PT-based developmental milestones for 0-3 year olds with WS,
    Speakers:
     Optional 
     

    Medical

    2:45 PM  -  4:00 PM
    Cardiovascular Concerns in WS  (All)
    Harborside A
    Seventy-five percent of our kids have mild to severe cardio issues. Learn all you need to know about the different issues and where you should take your kids when a problem arises.
    Speakers:
     Optional 
     

    Community

    2:45 PM  -  4:00 PM
    Speaking about Best Buddies - Positive Impacts for Everyone!  (12+)
    Essex AB
    Learn about the Best Buddies program - how to get involved and the positive impacts it can have on both the individual with WS and their Buddy!
    Speakers:
     Optional 
     

    Education

    2:45 PM  -  4:00 PM
    Behavior Supports in School  (school age)
    Harborside B
    How to develop and implement positive behavioral support plans in preschool/elementary school - from requesting a Functional Behavioral Analysis to working with a BCBA and paraprofessional.
     Optional 
     

    Visioning

    2:45 PM  -  4:00 PM
    Charting the Life Course  (All)
    Harborside D
    Do you work best with structure? Do you find it hard to know where to begin when it comes to plotting a course for the future. Charting the Life Course is a curriculum that can add the structure you are looking for.
    Speakers:
     Optional 
     

    Housing Models

    2:45 PM  -  4:00 PM
    Finding/Creating the Best Housing Opportunity Outside Your Own Home  (18+)
    Harborside C

    An independent life is the goal of a growing number of adults with WS, but finding the right opportunity for them is not always easy. Join several parents who have located/created successful opportunities for their sons and daughters as they discuss the when, where and how they found the right "fit."


     Optional 
     

    Gastrointestinal

    2:45 PM  -  4:00 PM
    Warning Signs and Prevention of Adult Gastrointestinal Issues  (16+)
    Harborside E
    Diarrhea, constipation, diverticulitis, diverticulitis, IBS…the list of possible gastrointestinal issues for those with WS is long. Doctor Barbara Pober, along with WS parent, and gastrointestinal PA Jenna Ottenheimer, will discuss the issues and possibilities for minimizing their impact over the lifespan.
     Optional 
     
    7:00 PM  -  11:00 PM
    Dance/Ice Cream Social
     Optional 
  • Saturday, July 14, 2018
  •  

    Medical

    8:45 AM  -  10:00 AM
    Sleep Issues in Adults with WS  (All)
    Essex AB
    Sleep Apnea and other sleep issues common to adults will be discussed as well as cPap use.
     Optional 
     

    Reading

    8:45 AM  -  10:00 AM
    Learning Experiences of an Excellent Reader with WS  (School age)
    Atlantic
    This session will provide an in-depth reading profile of an accomplished young adult with Williams syndrome.
     Optional 
     

    Community

    8:45 AM  -  10:00 AM
    Growing up with Williams syndrome  (All)
    Harborside D
    Several young adults will share the life they have created and their dreams for the future (this session repeated with other adults at 10:20).
    Moderators:
     Optional 
     

    Education

    8:45 AM  -  10:00 AM
    Making Math Meaningful  (School age)
    Harborside B
    This session will focus on the best practices in math instruction featuring targeted instructional strategies for students with WS. Grades K-12 will be touched on, with the heaviest focus being on grades 3-9.
     Optional 
     

    Post-Secondary

    8:45 AM  -  10:00 PM
    Considering Post-Secondary Options  (18+)
    Harborside E
    Several parents of young adults who are currently in post-secondary programs or recent graduates will talk about the journey to finding the right program.
    Moderators:
     Optional 
     

    Future Planning

    8:45 AM  -  10:00 AM
    Future Financial and Public Benefits Planning - Do it Now  (All)
    Harborside C
    What can be done now to build a long-term solution? This session will provide information on all types of benefits - Medicaid, Medicare, SSI, SSDI, SNAP, energy Assistance etc. Legal authority and a comparison of Trusts and ABLE accounts will also be included as well as a sample Letter of Intent which is a guidance document that every caregiver should write and update annually.
    Speakers:
     Optional 
     
    IEP Drop-in Clinic Saturday: By Prior Appointment
    Bristol Room: 3rd floor

    Throughout each day there will also be an IEP "Drop in" Clinic where you can schedule a private appointment with an experienced advocate to review your child's current IEP. Sign up for a free 45 minute one-on-one session with advocacy experts to review your child’s IEP and get general suggestions for making current goals stronger, more appropriate goals to add, requesting services, etc. Sessions are available throughout the day, every day! If you are planning to attend the Convention, please pre-register your scheduled advocate session at http://www.wsa2018-advocates.com/

     

    NOTE: simply adding this session to your schedule in the app does not equate registering.
     

    Medical

    10:20 AM  -  11:35 AM
    Anxiety and Depression in Adults with WS  (16+)
    Harborside C
    Drs. Pober and McDougle will discuss common issues of anxiety and depression, as well as triggers and treatments.
     Optional 
     

    Reading

    10:20 AM  -  11:35 AM
    Reading Comprehension Profiles of Teens with WS  (13+)
    Harborside A
    Individuals with Williams syndrome (WS) experience difficulties in learning to read.  In order to gather research that will provide appropriate instruction, we administered an informal, diagnostic reading battery to 11 adolescents in a camp environment in the summer of 2017.   In this presentation we will share the informal diagnostic reading assessment process; results of our assessment; and instructional strategies that might be employed by educators, related services personnel, and families of individual with WS.
     Optional 
     

    Community

    10:20 AM  -  11:35 AM
    Growing up with Williams syndrome  (All)
    Harborside D
    Several young adults will share the life they have created and their dreams for the future.
    Moderators:
     Optional 
     

    Education

    10:20 AM  -  11:35 AM
    Implementing Effective Behavioral Principles in Learning for Children Diagnosed with WS  (Under 8)
    Harborside B
    Basic principles of Applied Behavior Analysis (ABA); promoting independence with schedules and token economies; functional communication training and naturalistic teaching methods will be discussed by Elizabeth Walsh, MS, BCBA, LBA and parent of a child with WS.
    Speakers:
     Optional 
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