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2012 WSA National Convention Sessions

PARENT PROGRAM - DAILY SCHEDULE

Tuesday          Wednesday          Thursday          Friday          Saturday       Schedule    

Join medical and educational professionals, WSA members with experience in the field, and each other to learn the latest educational strategies and medical information needed to help our children, of all ages, attain their full potential, and enjoy enriched and healthy lives.
Please make note of the session #'s (in red) of the sessions you would like to attend - they will be necessary to complete your convention schedule (required) at the bottom of the page.

 

Tuesday, July 3, 2012

1 - 2:30 PM      OPENING KEYNOTE         The Magic of YOU!      David Hira
Did you know that you are special and incredible beyond your imagination? Magician David Hira will enthrall you with both his magic and his perspective on the miracle that is YOU. You will laugh, be amazed, and in the end you will appreciate not only who you are but learn to better appreciate everyone that is around you. It's the "feel good" beginning of a great conference. Don't miss it!

2:45 - 4:00 PM      BREAKOUT SESSIONS
Tu - 101      QTc Prolongation in Williams Syndrome: What Does It Mean;        Thomas Collins, MD
This session will discuss the recent data demonstrating the increased prevalence of QTc prolongation in patients with WS. There will be emphasis on surveillance and the implications of this finding on other therapies and ADHD medications.

Tu - 102      The Language of Special Needs        PANEL
When your child is diagnosed with Williams syndrome, you enter a world defined by specialists, terms and abbreviations that are foreign and confusing. This session will help you understand the terminology and feel at home in this unexpected new world you are entering.

Tu - 103      Supportive Independent Living: How Parents Can Create a Living Arrangement that Works
Margot & David Wizansky; Specialized Housing

For 29 years, Specialized Housing has worked with families to create the supportive independent living arrangements of their choice. Each community is established by a group of families who share an experience and feel a kinship, and who become extended family for the residents and staff. WSA members who have children living in SH households will join Margot and David to share their stories and answer your questions about establishing and funding similar housing in your own communities.

Tu - 104      Transition to High School
Moving from middle to high school can be a daunting experience, not just with the change in daily routine, and an often much larger school. It’s also the time to start planning for a future beyond high school and insuring that the student’s IEP contains the right language and goals to insure the best possible programs and funding. This session will walk you through that process.
 

WEDNESDAY: July 4, 2012

8:30 - 8:55 AM     Then & Now – The Changing Face of Williams syndrome & the WSA - Terry Monkaba

9 - 10:30 AM        KEYNOTE   Neurodiversity: A Concept Whose Time Has Come  Thomas Armstrong, PhD
This session provides a new perspective on diversity by showing how children and adults with special needs (including dyslexia, ADHD, autism spectrum disorders, and intellectual disabilities such as Williams syndrome) can be looked upon in a more positive way by seeing each person in terms of their strengths rather than their weaknesses. Dr. Armstrong examines findings in evolutionary psychology, neuropsychology, anthropology, and other fields to show that what we regard as “disabilities” in our culture may have at other times and cultures been considered assets and advantages. Using this new and inclusive concept of “neurodiversity”, Dr. Armstrong argues for a radically new approach to helping those with “differently wired brains” based upon “positive niche construction,” deep respect, and the celebration of natural brain differences.

MORNING BREAKOUT SSESSIONS
   
10:45 – Noon
WED - 105       A Parent's Heart: Using Writing to Tap into our Stories        Ani Tuzman
A Parent's Heart is a treasure chest full of stories, hope, and abiding love. As parents of differently-abled daughters and sons, we have been given rare gifts—gifts often not recognized, let alone valued by others.
Writing can be a path into our hearts and the wealth contained there. Writing together adds to our riches. A Parent's Heart TM Writing Gathering provides an inspiring, safe, and playful space in which to begin to open the treasure chest of our experiences and find words for what is in our hearts. All are welcome, regardless of writing experience.

WED - 106      Self Employment for Adults with WS            PANEL
Young entrepreneurs with WS will talk about how they got started in their chosen business endeavors, how they run their businesses day to day, and the help & resources they use to insure their success.

WED - 107      Developmental Stages in WS           WS Professional Advisors
Children with WS are known to have developmental delays, but what does that mean? Drs. Mervis, Levine and Klein-Tasman will discuss the typical developmental stages, as well as typical delays for individuals with WS, and how you can help minimize them for your child.

WED - 108      Musical Yoga Adventures – Helping All Children Learn through Song, Sequence & Creativity Linda Lara
The practice of yoga is becoming more important as part of the school curriculum, and is also a great way for you to connect with your child after a busy day. Please join us for an interactive session, where you will learn all about the abundant benefits of the combination of music and yoga. Find out how to help your child become stronger, more flexible, better focused, balanced and more confident. Experience feelings of connection, energy, and relaxation, which you can pass on to your child. This session will take you on a journey where you will discover many new possibilities in helping you and your child grow in ways that will last a lifetime.

AFTERNOON BREAKOUT SESSIONS

1:15 - 2:30 PM
WED - 109       Transition to KG          Michelle Self, PhD

This presentation will provide a 10-step process for gathering specific, useful information which will insure you’re prepared to begin to navigate the school system.

WED - 110       8 Kinds of Smart: Building on a Student’s Assets for Success in School and Life  
Thomas Armstrong, PhD

This session shows how Howard Gardner’s theory of multiple intelligences provides a powerful tool through which all students’ abilities, including those of students with Williams syndrome, can be highlighted and worked with to improve student motivation, self-esteem, and academic achievement. The presentation includes interactive experiences, a hands-on demonstration, and a practical lesson planning tool educators and parents can use to tailor instructional strategies linked to specific academic outcomes.

WED - 111      How Can We Support Our Kids & Grandkids?         PANEL with Sara Miranda MSW
Join us for an interactive, “facilitated networking” session for grandparents. Discuss the best ways that you can help and support your children and grandchildren as they learn to cope with Williams syndrome.

WED - 112      Networking - all ages
Join other parents with children of similar ages to share challenges, joys, and the tips & tricks you have learned to make life a little easier along the way. Each session will be facilitated by the parent of an older child.

3:00 PM      {embraceable}               Jon Kent
Watch the documentary that captured the hearts of many at the Thessaloniki Documentary Film Festival and the Special Olympics World Games in Athens. Producer Jon Kent will be on hand to take questions following the film.

THURSDAY - July 5, 2012

8:45 - 9:00 AM       MORNING WELCOME WSA       Board President, Deb Payne

9:00 - 10:30 AM    KEYNOTE – Future Planning for Families Supporting Adults with Life-Long Disabilities
Theresa Varnet

Parents often worry about unknown such as where their adult child with life-long disabilities will live; who will advocate for their children, what kind of vocational, recreation, residential and support services will their child need and receive. This session will provide information parents can use to gain the peace of mind that comes from planning for their child’s future while they still have the health, time and energy to do so.

MORNING BREAKOUT SESSIONS

10:45 – Noon
Th - 113      Common Medical Issues in WS         PANEL

WSA Medical Advisors will provide the latest information on symptoms and treatment of the medical characteristics of Williams syndrome.

Th - 114      Estate Plan Options that Preserve Eligibility for Gov’t Benefits         Theresa Varnet
Few families can afford to pay for all of the supports and services needed by a family member with a disability. When the primary caregiver dies, the family member with a disability is in even greater need of the basic care and support provided by the government. Therefore, knowledge of government benefits is critical. Families are often overwhelmed and intimidated by the agencies that provide services, as it can be difficult to keep track of who provides what and to what extent.  This session will provide the guidelines you need in order to create an estate plan that will preserve your child's eligibility for critical government benefits.

Th - 115     Post-Secondary & Transition Programs for Individuals with WS        PANEL
The number of post-secondary & transition programs for individuals with WS is growing every year. This panel presentation will provide general information from 5 different types of program options. Each of the programs will also be exhibiting throughout the week, providing opportunities for families to get additional questions answered. BHMA; Strive; VISTA; Riverview

Th - 116       Music Therapy for All Ages          Karen Carreira & Mallory Finne
This session will present and redefine music therapy and will identify issues that surface during adolescence and beyond for people with Williams syndrome. The benefits of the use of music therapy to address these areas will be outlined and discussed and helpful resources will be identified.

Th - 117       Understanding that there are Differences Between Friends and Strangers
Andrea Franz, LICSW

Tools and Strategies to Help your Middle School and/or High School Child with WS learn the Boundaries within Social Relationships

Afternoon Breakout Sessions

1:15 - 2:30 PM
Th - 118       Relationships, Romance and Sexuality           Matthew Westra

A frank talk with parents about relationships for their children with WS. How parents can foster and facilitate successful navigation of the thrills and difficulties of romantic relationships. The session will emphasize discussion over presentation. Bring your questions, concerns and victories. When it comes to parenting, you can’t do it “right” but at least you don’t have to do it in isolation.

Th - 119      Developmental Therapies for WS - OT,PT,SLP
Therapists will discuss the value of therapeutic interventions - when they should be conducted and how, and the difference between school-based and private therapy goals and programs.

Th - 120      Pharmacological Treatment of Behavioral Symptoms in Williams Syndrome  
Christopher J McDougle, MD

This presentation will describe behavioral symptoms that occur in persons with Williams syndrome that may be targets for medication treatment. We will discuss specific medications and their side effects, and what each medication might be useful for. There will also be plenty of time allotted for questions and answers.

Th - 121     Discovering the RIGHT accommodations for your child with WS    Robin Pegg, Erin Cunningham
In this session you will take part in a live demonstration using the Sett framework as an IEP planning tool to identify appropriate accommodations, modifications and assistive technology tools necessary to support your child's ability to access and make progress in the curriculum.

Th - 122       Guardianship and Less Intrusive Alternatives      Theresa Varnet
In order to protect your child from unscrupulous individuals who may exploit your child's ability to make informed choices, it is necessary for families to familiarize themselves with the various options of legal protection for their disabled adult child.  This session will answer your questions.

2:45 - 4:00
Th - 123      Programs for Living On Your Own        PANEL
As parents, most of us dream about the day when our children are able to live on their own – it’s a “right of passage” into adulthood that we all want for our kids. Not so long ago, due to a lack of assisted living options, that right of passage was out of reach for many adults with WS. Thankfully, that is no longer the case. There are a growing number of programs and assisted living housing models where adults with WS can flourish. Providers from 3 of the best models as well as a service provider who works to support individuals in these and other environments will discuss what these programs look like and how similar models can be developed throughout the country.

Th - 124      Utilizing Music Therapy Concepts to Support Daily Living Skills 
Karen Carreira and Mallory Finne
Each day, BHMA staff access and utilize the innate properties of music and music experience in classes, ensembles, individual lessons and day to day social interactions. The BHMA community is founded and largely motivated by the students' love of music, and the belief that music can be used very successfully to motivate and teach a range of key life, academic, social and vocational skills to young people who are challenged learners. This session will share the relationship that BHMA students have with music, with others through music and with themselves in music.

Th - 125      Accommodations & Modifications in Kg through 3rd Grade          Michelle Self, PhD
This presentation will discuss the types of accommodations and modifications received by 11 children with Williams syndrome in the early elementary years. We will explore Touch math, Handwriting Without Tears, computer use,
aides, special checklists and much more.

Th - 126       When it All Comes Together: Accommodated Assignments and AT Tools
Robin Pegg, Erin Cunningham

In this session you will see actual accommodated/modified assignments and assistive technology tools used by children with Williams syndrome across all grade levels and curriculum areas (reading/english, math, science, social studies/history, foreign languages, etc)

Th - 127      Utilizing a Special Needs Trust to Create Housing Options          Theresa Varnet
While many persons with disabilities live at home with their families by choice, many do so because they are unaware of the options available to them. This session will evaluate the major barriers to independent living faced by persons with disabilities. It will also discuss how individuals and families can overcome these barriers, the two most common of which are:
1) lack of finances, and
2) lack of community-based support services.

FRIDAY - July 6, 2012

8:40 - 9:00 AM        MORNING WELCOME         WSA New England RC, Laura Spinney

9:00 - 10:30 AM      KEYNOTE Shut Up About Your Perfect Kids      Gina Gallagher and Patricia Konjoian
Gina & Pat are sisters and parents raising children with disabilities. Inspired by the success of their sisterly heroines, Mary Kate and Ashley, and fed up with listening to parents brag about their “perfect children” and never asking about theirs, the sisters decided to seek therapy by writing a book. So in 2006, they self-published their first book, Shut Up About Your Perfect Kid! The Movement of Imperfection, which explores the humorous, heartwarming side of raising an imperfect child in a world pre-occupied with perfection. By Friday we know you will be ready for a light-hearted morning filled with laughter, tears and a great message. You will find it here!

Morning Breakout Sessions

10:45 - Noon
Fri - 128       Health Issues in Adults               Barbara Pober, MD

Dr. Pober will provide an overview of medical concerns for Adults with WS including high blood pressure, diabetes, etc. and answer your questions on the issues.

Fri - 129       Music Therapy for youth with WS          Louie  Morand, MTBC & Larissa Morand, MTBC
Learn how the joyful art of creating music together can help children with WS explore language, movement, communication and social relationships.

Fri - 130       Cardiovascular Disease in WS               Leslie Smoot, MD
Dr. Smoot will discuss the current concerns in cardiovascular disease in individuals with WS ( Long QT, Hypertension, Sudden death) - Facts and Fiction.

Fri - 131      Treating Fears and Phobias with Replays           Karen Levine, PhD
Replays is a highly pleasurable form of adult-child play, used to gradually desensitize children to upsetting 'everyday' types of events (e.g. haircuts; taking medicine; shots; wearing hats, glasses, shoes; bugs; other people singing; environmental sounds; food aversions). Through Replays the adult helps the child explore their own intense responses and develop new more adaptive emotional associations with and hence responses to the trigger events.

Fri - 132       Where Are They Now             PANEL - WS Adults
Join a panel of adults with WS for a frank discussion about how they are doing, what they are doing, and what they hope to do in the future.

AFTERNOON BREAKOUT SESSIONS

1:15 - 2:30 PM
Fri - 133       Health, Wellness & Prevention: What Physical Therapy Can Do for your Child   
Karen Hasson, DPT

This session will discuss the pathology and effect of Physical Therapy and exercise on conditions
such as cardiovascular issues, diabetes, Hypertension (HTN), Poor balance, Joint stiffness/poor posture/muscle tightness, decreased endurance, osteoporosis, osteoarthritis, hypercalcemia & hypothyroidism.

Fri - 134       Assistive Technology Tools for kids with WS                  Robin Pegg & Erin Cunningham
In this session you will experience some of the latest assistive technology tools and resources available that
WORK for kids with WS. Vendors and Consultants will be available to help you understand how these tools can help your child participate and progress in the school curriculum. This will include online learning resources, iPad/iPod/Smartphone apps/technology, and software/ devices that support curriculum access.

Fri - 135        Treating Anxiety in Older Kids & Young Adults                    Karen Levine, PhD
Cognitive Behavioral Therapy (CBT) is a widely used and often very effective approach to helping older children (10 years or so plus), teens and adults become better able to cope with feared situations and events. The basics of CBT as well as approaches to adapting CBT for individuals with less language or cognitive ability will be illustrated in this workshop.

Fri - 136        Gastrointestinal Issues in WS  
Gastrointestinal issues are common in WS.  Come to this session to learn more about issues including diverticulosis, diverticulitis, feeding difficulties, constipation, rectal prolapse, colitis and more.                

Fri - 137        Navigating the hospital system               PANEL WS Moms/Nurses
Learn from the folks on the “inside”. Our panelists will provide the nurses' perspective on navigating the hospital system, communicating with health professionals and things you can do to help insure you will receive the best care.

2:45 - 4:00
Fri - 138      Stress Relief 101              Jennifer O’Byrne, Jessica Cummins

Talk time out from the mind-bending issues of Williams syndrome to have a little fun with WSA staff members, Jennifer & Jessica. Keep your hands busy and give your mind a rest… and create some great “stuff” along the way.

Fri - 139        Endocrine Issues in WS                   Takara Stanley, MD    Barbara Pober, MD
Diabetes, hypercalcemia, and thyroid issues are common in Williams syndrome. Join Drs. Stanley and Pober for a discussion of the issues including symptoms, treatments and expected outcomes.

Fri - 140        Techniques for Reading Acquisition         Nancy Grejtak
Join Special Education Consultant, Nancy Grejtak for a discussion of decoding techniques and other strategies to help your child learn to read and increase comprehension.

Fri - 141        Orthopedic Issues in WS
Tight heel chords, muscle issues, lordosis, kyphosis, scoliosis...all are common in WS.  This session will discuss the various orthopedic issues in WS, and treatments and strategies for managing them in your child.

Fri- 142         Helping Kids Develop Friendships            Sara Miranda, MSW, Karen Levine, PhD
Many of us often note that everyone is friendly to our kids, but they have few, if any, close friends.  Join Sara and Karen to talk about the "whys" and the "how tos"  for helping our kids, of all ages, develop lasting friendships.

SATURDAY - July 7, 2012

8:45 - 9:00 AM        Closing Comments           Terry Monkaba

9:00 – 10:30 AM      Research Update              Barbara Pober MD & Helen Tager-Flusberg, PhD
WS Researchers from around the country and Canada will meet on July 2nd & 3rd to discuss the latest research findings in cardiovascular, genetics, and neurological aspects of WS.  Drs. Pober and Tager-Flusberg will provide everyone with a "family friendly" discussion of the latest research findings and what's on the horizon for WS.

10:45 - Noon
Sat - 143          Awareness Week 101             Jennifer O'Byrne, Mike McFall

Team WSA is growing every year, and so is awareness of Williams syndrome in communities throughout the country. Join Jennifer and Mike for a look at the rapidly increasing WSA awareness activities. They will talk about the different types of events, and how you can get involved on many different levels. 

Sat - 144         Brothers and Sisters                     Sibling PANEL - Sara Miranda to Moderate
When they are small, we wonder how to speak to our children about their sibling with WS.  As they become school age, we work hard to help them understand their brother or sister better and hope they will watch out for them in school and in the community.  And as they get older, we wonder what responsibilities they may or may not want for their adult sibling when we are gone or no longer able to help.  This session will give you an opportunity to hear the answers to these and many other questions from the siblings themselves.

Sat – 145        Securing SSI Benefits                   Terry Monkaba
Some of our children can qualify for social security benefits as youth, and most with WS should qualify at age 18.  However, anyone might be denied.  Learn what information is critical and how to provide it in a way that will help to insure that your child will have the best chance of qualifying to receive the benefits they deserve.

Sat - 146         Community Group Involvement              PANEL
We all want our children to experience the same benefits and fun their siblings and friends have by participating in community organizations and school clubs... and they can. Representatives from several groups of different types and parents whose children have experienced success in community orgs. will talk about their experiences.

The following questionnaire is a required part of the registration process.  If two or more adults are registering simply "refresh" your computer screen after clicking "done".  Refreshing will bring a new blank questionnaire back to your computer.

 

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