September 2018 Issue
Convention 2018 is “in the books” and by all accounts, it was a convention for the record books with great attendance and many new elements. Nearly 1500 attendees took advantage of educational sessions, camp and adult programs, and special social events (the block party and the dance were hits!) as well as connected with friends from all over the country and the world. Thank you to everyone who attended, and a special thanks to speakers, volunteers and exhibitors, who contributed so much to the experience! Included, here are just a few highlights from #SetSail2018. We're not sure we can top this one, but we're definitely going to try, so mark your calendars now for Convention 2020 – July 8-11 in Phoenix, AZ!
Julie Oglesbee: Infant and Toddler Program Chair
Julie stresses that because this program is on site it’s imperative that it be exciting and not a “stuck in a room” experience. With the music therapists who came every day, the professional puppeteer, therapy dogs and rabbits, and an abundance of toys, snacks and attention from wonderful volunteers, her goal was met.
Julie emphasizes that local families are essential to the program’s success, gathering toys and furniture, accepting and storing items delivered to their home prior to the convention, volunteering to help set up and tear down the rooms, and most importantly gathering local friends and relatives to volunteer throughout the convention. Each of our programs for children with WS and their siblings is hugely important but none more so than child care for our youngest attendees. Thank you for helping to ensure that our little ones were safe and happy throughout the convention, Julie!
Nora Beger, On-site Registration Chair
Nora has been a volunteer with the WSA since becoming a Board member in the early 90’s and has always been involved on a local level, helping to organize social gatherings and local conferences in Buffalo, NY and in the Philadelphia area. Like most of us, Nora first attended conventions as a parent at our meetings in Chicago and San Diego. It wasn't long before she was helping at many more, including Grand Rapids, Dearborn, Long Beach, Anaheim, Columbus, and Baltimore. She remembers the early days, working with WSA staff member Anne Tipton on paper registrations. This year, Nora quickly learned our new mobile system and trained her volunteers to ensure great results.
Registration is a critical position at a convention. That is where everyone goes with questions of all types. Nora works in communications and we are thrilled to have her expertise in this important role to help ensure that our convention attendees have a good experience. Thank you Nora! We know that everyone in good hands with you and your team “manning the desk.”
Camp Blue Skies once again partnered with us to welcome 40 adult campers with WS to Georgia in March. Throughout the week, campers participated in a variety of activities from cooking to zip line, and everyone had a wonderful week in spite of cold, cloudy weather most days! Blue Skies was followed in late July and August with the WSA’s two Whispering Trails sessions for campers ages 6 through 21. Many of our campers and volunteers/counselors also joined us at the convention, so they had a very busy summer!
Long-time WSA camp director Robin Pegg, (pictured here with new director Alex Carrico (left) and retiring camp Nurse, Sue Spielmaker (center) passed the reigns to new camp director, Alexandria Carrico (Alex), this year. Alex first attended Whispering Trails in 2013 when she visited camp to conduct research for her master's thesis which involved holistic ethnography while studying at Florida State. She is very interested in how music is used within a cultural perspective and how it can be used to promote advocacy. Alex became “hooked on camp” that summer and has been back each year since as a counselor and music instructor. Alex (pictured in red dress) said that "I would say every night, 'this night is my favorite' and I would cry." She was struck by how the energy was not necessarily about how talented everyone is (though many are) but how flat-out powerful the audience appreciation and exuberance is, and how the campers root for one another.
As a voice instructor, vocal director and band director, Alex is dedicated to breaking down barriers with music—bridging gaps and countering stereotypes of those with different abilities. One of the goals the camp staff has been working on (with Robin's guidance) for several years is structuring the camp programs so our campers have more input in aspects such as music choice and choreography. Alex plans to continue that process. She explains that having agency of choice and being able to express their abilities while being in an environment of acceptance where they are embraced as individuals, is key and is making a difference. The teens work on song-writing, improv, adaptive strategies, dance combos, percussion, singing and camp favorite—open mike night, and they have a blast. Alex is excited to be the new camp director, and proved she was up to the challenge with great camp sessions this year. We hope that she, along with new assistant director (and long-time camp instructor), Donovan Thakur, will be with us for many years to come!
We can’t thank Robin enough for her camp leadership over the past 5 years and congratulate Alex and the team for a great transition and program in 2018! Also saying farewell to camp this year is long time nurse, Sue Spielmaker. "Nurse Sue" has been taking wonderful care of our campers for 8 years and we will all miss her!
Diploma or Certificate of Completion? What’s the Difference?
Robin Pegg, MEd, COTA/L, ATP/WSA Educational Consultant
Planning for your child’s future can be complicated and intimidating. When your child has Williams syndrome, it can be even more complicated and intimidating. Planning for life after high school is enough, but what about high school itself?
We know that every child with WS is unique and will grow and develop at their own pace. We also know that as awareness of WS has increased and as teachers are learning more and more about how to educate our children with WS, we are seeing more children with WS earn high school diplomas, even in states like New York and California where the graduation criteria are comprehensive and strict.
Consider this: You’ve made it through elementary school. You’ve made it through those turbulent middle school years. Now your child is in high school and the school is asking questions about whether your child is going to be on a “diploma track” or a “certificate track.” Are you wondering what this even means? Are you wondering why they are talking about this now? Are you wondering why you weren’t talking about this a long time ago? Those are great questions!
The conversation about diploma vs. certificate should happen much earlier than 9th grade. This conversation should begin in elementary school. Why? Two words: prior knowledge. Knowledge is a cumulative process. What a student learns one year is the foundation knowledge for what will be learned the next year. Therefore, the curriculum a student has been exposed to and what knowledge has been gained in the early grades has a direct impact on what knowledge the student is able to learn and understand in the later grades. There is no right or wrong answer to the question about which track to follow but be sure that you have all the information you need before making this important decision, and most important of all, remember to plan ahead; because graduation starts in kindergarten.
And even though it's only September, it's a good time to plan ahead if you're interested in hosting any regional holiday parties, which are good way for families to connect. Any WSA friend can host one. The WSA will provide support for your event - creating a flyer and online event notices and notifying families. Simply complete our event form six to eight weeks prior to the date of the gathering. The form can be found here. For ideas or other information on social events, visit our information/ideas page. If your area doesn't have a holiday party, it's a good time to start the tradition! If you don't know if your region has one planned, it's a great idea to connect with your regional chair: they can be found here. Thank you for volunteering in your region!
New in the WSA Store
Whenever I Think About You... Help spread WS awareness at your next baby shower! This beautiful bedtime story features children with Williams syndrome. It can be found in our online store here.