You are here

November 2018

 

 

 

 

November 2018 Issue

Volunteer Spotlight

Giving Tuesday

Think College

Holiday Gift Ideas

WSA Camps

WSA Store


 

Volunteer Spotlight

“Our Northwest group is very close and has a special bond. I love it!” That is thanks in part to WSA volunteer Stephanie Ackley, who has been hosting the #Walk4Williams in that region along with other events for the past few years. She was born and raised in Portland Oregon, and she and husband Justin, her high school sweetheart, live there with daughter Maddie (16, WS) and ten-year-old twins Morgan and Caitlin.

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 that the Portland area are lucky to have a volunteer like Stephanie—and we hope everyone enjoys the party. Thank you, Stephanie!

 

 
 

Giving Tuesday

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.  

You can invest in the Williams Syndrome Association’s village of support by making a gift on Giving Tuesday. By donating to the #Williamssyndrome campaign now or on Giving Tuesday, November 27, 2018, you will help children and adults with Williams syndrome face the unique challenges that confront them as well as have opportunities to celebrate their extraordinary gifts.
 
Together, we can provide individuals with Williams syndrome with the courage to dream and the resources to help make their dreams come true. Our sons and daughters will have opportunities at home, in the classroom, and in their community to have lives filled with accomplishments.  
 
Please join us to strengthen our village of support and grow our community. Tell your story, voice your personal connection, and share the impact of the #WSA with your family, friends and network. On the 26th and 27th, share our posts, pictures and videos and your own and include the link to give.
 
Thank you! #WSA 

 

Think College

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.  They work with families have to help navigate the exciting and complicated process of considering college options for our daughters and sons with Williams syndrome. 

Think College conducts research related to transition and dual enrollment, employment, and higher education for students with intellectual disability, and uses these findings to create resources for expanding college access and improving student outcomes. Their website is very informative.  Be sure to navigate throughout the site to find both state and federal resources An organization fact sheet can be accessed here.
 
Though their site is quite comprehensive, Rebecca Lazo, Knowledge Translation Associate at Think College, told us that staff really enjoys speaking to and connecting with families, so feel free to pick up the phone: (617) 287-4300. “Our website has lots of good resources, and we share regularly via social media.  But if you have a question, please reach out to us directly and we are happy to talk with you.”
 
Cate Weir, program director for the Think College National Coordinating Center says that they love to give answers to families, but that the relationship goes both ways. “Think College loves to talk to parents and students about college options.  And we ask parents to share what they learn with others.  We want to be sure that everyone knows that college is an option for ALL students.” 
 
Rebecca reminds families interested in the college path that planning ahead is key. Talk to your children about work they may want to do someday and work back from there as far as considering programs for college. She stresses that it is never too early to discuss college as a goal with IEP partners. 
 
Think College is offering a webinar Dec. 5:  Exploring Inclusive College Opportunities for Your Child with ID. It’s a perfect opportunity for families who are interested in learning more, so mark your calendars! Participants will: “learn where to start in college planning by exploring inclusive college options for their student; what students need to go to college and what supports might be offered at college (including supported living, academic supports, peer and/or paid supports); and setting goals for what to expect from college.” Register here.
 
Think College is a terrific resource; we appreciate their collaborative efforts with college inclusion and willingness to share their knowledge with us. 

Holiday Gift Ideas

Looking for great gift ideas for children with Williams syndrome? Here are a few ideas recommended 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! 

We asked a group of parents for recommendations and they suggest the following: Magformers magnetic building blocks are great for developing building and thinking skills. 
 
Roboto UNO, and Sneaky Snacky Squirrels or Zingo for the younger kids are suggested for those looking for family game opportunities to improve engagement as well as problem solving. 
 
Roboto Uno is a customizable game that begins with recording each player's name and creating totally unique "house rules." The unpredictable little robot will surprise by calling out random rules and funny phrases that change the way it’s played. One parent said that “Roboto Uno was an absolute hit with us!! We got to add in fun action or words to the game by way of recording. The anticipation of playing with colors and numbers and then a robot adding a self-inflicted moment of humor created even more of an engagement in playing the game. Older games that we love are ‘Sequence’ and ‘Sorry.’”
 
Are your kids a little older? Kate, an adult with WS, loves charades and UNO and lots of books, which will always be in style.
 
For younger children, the best ones require spending time with the child to share and discuss characters and ideas. WSA Education Consultant Robin Pegg highly recommends the Pete the Cat series and any of Mo Willems’ books (Elephant and Piggy are so cute!); both of these collections of books also include song components, which kids love. Robin also highly recommends The Wonky Donkey
 
Gifts don’t always have to come wrapped, and another parent recommended experiences. “Going somewhere - it’s an opportunity to make memories and do something together as a family.”
 
Sometimes thinking and talking, and sharing—are all the gifts we need.

 

 


WSA Camps

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! 

Camp includes:
Traditional activities such as nature hikes, fishing, archery and climbing, arts/crafts, and more
Music programs including jam sessions, drum circles, and karaoke
And of course making new friends and reuniting with old ones.
To read more and apply, interested individuals and families should click here
 
 
 
Whispering Trails school-aged (6-12) and teen (13-20) summer camps will be held at Camp Nissokone in Oscoda, Michigan in late July and August:  July 21-25 for school-aged; July 28-August 3 for teen camp is. Applications and
scholarship information will be posted here in early 2019.


WSA Store

 
 
The lovely bedtime story picture book Whenever I Think of You, featuring illustrations of children in our community, is 20% off as our Black Friday deal! Click to order.
 
 
 
Check The WSA store after Thanksgiving for a few new products perfect for gift giving, including new hats, drink tumblers and this adorable new WSA furry friend!
 
Topics: