Bi-Monthly eNews Update from the WSA

The Holiday season is traditionally a time for reflection. This year in particular, with the recent tragedies of Hurricane Sandy and the shooting in Newtown, CT, I know we are hugging our children extra tight, as we are confronted with the knowledge that everything can change in an instant.

At the WSA National Office, we feel very blessed this year, knowing that we have so many very special friends both here in the United States and throughout the world. We are also very mindful of the fact that some of our friends were personally affected by these recent events, and others that we may not be aware of - our hearts go out to each of you.

On behalf of everyone here at the national office, I wish you all a joyous holiday season, and hope that 2013 will be filled with everything you need to enjoy a happy, healthy and peaceful New Year. Signature

Helping Your Children Understand

We often wonder how to talk to our children with Williams syndrome about the death of a family member or the impacts of events like the shootings at Sandy Hook. We asked Dr. Karen Levine to provide some resources, and hope that you find the following information helpful.

For younger children, Dr. Levine reports that the following article is helpful in terms of ways to think about whether we should talk to our kids about a particular incident and if so, what we should say. The article also discusses the range of impacts on kids and adults. Dr. Levine especially likes the articles acknowledgement that that we should not talk to young kids who would be unlikely to hear about an event, and that we need to separate our own responses from those of our kids.

How Not to Talk With Children About the Newtown Shooting

The following resource found on the NPR website is helpful for specific tips for talking to kids:

How To Talk To Your Kids About Conn. Mass Shooting

If your child "fits" on the autism/asperger's spectrum, the following is a great piece on that issue:

Fearing a Stigma for People With Autism

Finally, Dr. Levine relates that the mother of one of her patients who is 12 years old had a really good strategy - She had her son watch President Obama speaking at the memorial service where he talked about how we aren't going to let this happen and we are going to work harder to protect our kids. She told her son that if kids were worried about it at school he could explain to them how the President is working hard to make things safer. They also wrote a letter to President Obama thanking him for his actions.

Every child is different and will need a process tailored to his or her age, understanding, anxiety level etc., but this particular process was a nice way for a child and mother to communicate about the tragedy on a different level, by concentrating more on the things that are being done to keep children safer in the future.

Professional Conference Increases Research Interest in Williams Syndrome

A full day conference on Williams syndrome was recently sponsored by the Montefiore/Einstein Center for Williams Syndrome in Bronx, NY. The conference included sessions on Clinical and Behavioral aspects, brain imaging and functional brain studies, and genetic issues and mouse models. Each session concluded with thoughts on where research was headed in the particular area. At the end of the day separate and joint round table discussions were held between presenters, attendees and parents of individuals with WS. The WSA was proud to sponsor a portion of the meeting and would like to thank Dr. Robert Merion for spearheading the event.

WSA Adventure Seekers

All Dream Team and WSA GANG members age 21 and older are invited to join the WSA Adventure Seekers inaugural excursion. A 3 Night Bahamas Cruise aboard Royal Caribbean's Enchantment of the Seas. Friday, May 31 - Monday, June 3, 2013.

Click here to learn more

Webcasts

With 2 "live" webcasts now complete, the WSA webcast program is off to a great start. Our first 2 webcasts covered Qtc prolongation in Williams syndrome, and Assistive Technology. Each webcast was recorded and is available on the WSA website. Our next bi-monthly webcast will be held in February on a topic related to behavior and/or cognition. If you would like to suggest a future topic please send an email to [email protected] . Please put "webcast topic" in the subject line.

Click here to view the webcasts

Quick Announcements

2013 Summer Camp Programs

Applications for the 2013 recreation programs will be available online by January 15th. In response to your feedback, we are making changes to both pricing for all programs (It's going down!) and programming for adults. Watch for complete details in January.

Interested in Hosting an Awareness Event?

May, the official WS Awareness Month, will be here before we know it. Many like to coordinate walks or 5K runs, but there are countless options to help spread the word about WS. We also love to learn of new and unique events. Contact Jennifer O'Byrne with your ideas or questions at [email protected] or 800.806.1871.

WSA Board of Trustees Election
Ballots for the 2013 - 2015 Board term will be arriving in your "in box" shortly. Please take a moment to review the candidate biographies and indicate your support of the entire ballot or the candidates of your choice. It only takes a moment to be involved in the process. If you would like to learn more about the WSA Board of Trustees and how to become a member, please contact the national office.

Coming Soon!

A special "Education Issue" of Heart to Heart will be published in late January. Included in the issue will be classroom strategies for teachers, testing recommendations and Assistive Technology information.