November 2018 Issue
Stephanie wasn’t always an active volunteer, however. She describes her early years of raising a child with special needs and then twins on top of it as “just surviving,” but “as they got older and we were figuring out our new normal, I was able to take on more.”
Stephanie admired how volunteers were able to organize the WSA walks and holiday parties and after they didn’t happen for a couple of years, she decided it was her turn and that she could handle it, though she says that was out of her comfort zone. The number of families in the Northwest region was fairly small until a few years ago when it seemed a handful of kiddos were born with WS. The timing seemed right and Stephanie decided that it was important to keep these events going twice a year. She explains that Facebook (which unfortunately wasn’t available when Maddie was younger), has really helped increase family connections as well.
When not planning WSA events, Stephanie divides her time between two jobs – working part-time as a supervisor at the Moda Center, home of the Portland Trailblazers, Winterhawks and large concerts, and at Urban Excursions PDX, picking up elderly citizens with dementia and Alzheimer’s to take them on outings in the Portland/Beaverton area. In her free time, she loves hanging out with her daughters, whom she calls her best friends.
Stephanie is looking forward to the holiday party for the region, which is her favorite because “everyone dresses up and is so excited to see Santa.” She enjoys the feeling that “at these events parents can just sit back and ‘breathe.’ We all understand each other. We don't have to be as guarded as we might be in the real world.” Families in the Portland area are lucky to have a volunteer like Stephanie—and we hope everyone enjoys the party. Thank you, Stephanie!
It takes a village to provide the resources and support that we envision for everyone affected by Williams syndrome. Together, we can ensure that every individual with Williams syndrome has the opportunity for a bright future and the tools they need to reach their full potential.
If you attended the convention, you may have had the opportunity to interact with representatives from Think College. The organization is part of the Institute for Community Inclusion at the University of Massachusetts Boston, and they work with families to help navigate the exciting and complicated process of considering college options for our daughters and sons with Williams syndrome.
Looking for great gift ideas for children with Williams syndrome? We're here to help navigate the busy world toys and books! We talked to our advisors and some parents, who recommended some for improving development in young children. First, toys by Melissa & Doug might do the trick. They are on a mission to #TakeBackChildhood and have some great products, including a starter kazoo—perfect for our budding musicians!
The third annual Camp Blue Skies for adults with WS 21+ will be held a week earlier this year - March 11-15 in Rutledge, GA. Registration is now open and this popular camp program fills up fast!