Saturday, March 29, 2008

Dealing with Other People's Expectations

Erik Quinn: The Heart of a Family: Minimize:

Nancy writes and expresses some of the frustration felt by parents of kids with WS:

"Sometimes I get the impression that people think I am making this entire WS thing up.

All of it.

These days I focus on the positive while being fully aware of WS, and perhaps that is confusing to others. Perhaps that makes Erik's disability disappear to them. Unfortunately, perhaps the hard work we have done to help Erik achieve each milestone and Erik's daily struggles also disappear in their eyes."

Friday, March 28, 2008

Beyond nature vs. nurture: Williams syndrome across cultures

Salk Institute:

Identified more than 40 years ago, Williams syndrome occurs in an estimated one in 20,000 births worldwide. It arises from a faulty recombination event during the development of sperm or egg cells. As a result, almost invariably the same set of about 20 genes surrounding the gene for elastin is deleted from one copy of chromosome seven, catapulting the carrier of the deletion into a world where people make much more sense than objects do. Despite a myriad health problems and a generally low IQ, children with Williams syndrome are loquacious, sociable, and irresistibly drawn to strangers.

To determine the extent to which this behavioral profile is universal across culture, the researchers settled on two vastly differing environments: the United States and Japan, whose cultural differences are said to be aptly summarized in two proverbs: In America, “The squeaky wheel gets the grease,” while in Japan, “The nail that stands out gets pounded down.”

Using a questionnaire developed by Salk researchers, Bellugi and first author Carol Zitzer-Comfort, a professor at California State University in Long Beach, asked parents in the U.S. and Japan to rate the tendency of their child to approach others, their general behavior on social situations, their ability to remember names and faces, their eagerness to please other people, their tendency to empathize with others’ emotional states, and the tendency for other people to approach their child.

Despite the differences in upbringing, in both countries children with Williams syndrome were rated significantly higher in global sociability and their tendency to approach strangers than were their typically developing counterparts. But cultural expectations clearly influenced social behavior, since the sociability of normal American kids was on par with Japanese Williams syndrome kids, whose social behavior is considered out of bounds in their native country.

Goldmine of Research on People with Williams Syndrome

Daniel Levitin, Ph.D.

Not sure how I missed this! Levitin teaches here in Canada at McGill University. This page is full of written, audio and video reports of his findings.

The sidebar has a link to other scientists researching Williams Syndrome. Here is a goldmine!

Williams Syndrome: It's Not a Fairy Tale : NPR

Williams Syndrome: It's Not a Fairy Tale : NPR:

All Things Considered, October 14, 2006 · Fairy tales tell of wee folk who spend their lives singing and dancing. A rare genetic disorder called Williams Syndrome lends scientific support to the legends. Drummer Jeremy Vest is among those who are diagnosed with Williams Syndrome.

The premise of this article (that WS folks might be the historical reality of pixies and fairies) I find rather offensive, but the audio interview with Jeremy Vest is informational. Especially to a Dad with a drumming son!

Williams syndrome - Social Inhibition - Personality - Developmental Disorders - Brain Disorders - David Dobbs - New York Times

Williams syndrome - Social Inhibition - Personality - Developmental Disorders - Brain Disorders - David Dobbs - New York Times

The low I.Q., however, ignores two traits that define Williams more distinctly than do its deficits: an exuberant gregariousness and near-normal language skills. Williams people talk a lot, and they talk with pretty much anyone. They appear to truly lack social fear. Indeed, functional brain scans have shown that the brain’s main fear processor, the amygdala, which in most of us shows heightened activity when we see angry or worried faces, shows no reaction when a person with Williams views such faces. It’s as if they see all faces as friendly.

People with Williams tend to lack not just social fear but also social savvy. Lost on them are many meanings, machinations, ideas and intentions that most of us infer from facial expression, body language, context and stock phrasings. If you’re talking with someone with Williams syndrome and look at your watch and say: “Oh, my, look at the time! Well it’s been awfully nice talking with you . . . ,” your conversational partner may well smile brightly, agree that “this is nice” and ask if you’ve ever gone to Disney World. Because of this — and because many of us feel uneasy with people with cognitive disorders, or for that matter with anyone profoundly unlike us — people with Williams can have trouble deepening relationships. This saddens and frustrates them. They know no strangers but can claim few friends.

Wednesday, March 26, 2008

Lisa Considers the One Year Anniversary of Tatum's WS Diagnosis

Growing Up With Emma & TatPublish Postum: Spring is coming...

Easter, what can I say with Easter comes our second Williams Syndrome DX anniversary, it souled be worse…at least it was warmer then last year. You know Since Williams is what it is and such a part of our life's now I think I am done with remembering anniversary's in reference to it, I mean really why bother, it is not like I really knew Tate all that well pre Dx she was super little.

Of Books and Boys: Book Review: Musicophilia

Of Books and Boys: Book Review: Musicophilia

The final section discusses "Emotion, Identity, and Music." Different people have differing susceptibilities to music. Individuals with Aspergers may have intricate knowledge of many subjects, yet experience difficulty feeling an emotional response to music, while a whole group of individuals with Williams Syndrome can spend every waking moment engrossed in music and be unable to tie a shoe or add 3 + 5.

Country stars uplift children's hearts - Features

Country stars uplift children's hearts - Features

Sam Moore and his friends Lorrie Morgan, Travis Tritt, Wynona Judd, Jo Dee Messina and Callaway all joined together to honor the Lili Claire Foundation. The night was full of soulful duets with Sam and each guest. The musical choices included hits by Aretha Franklin, Louis Armstrong, Diana Ross and the Supremes, Conway Twitty and Amii Stewart. These hits included: "Knock on Wood," "Think,"Tennessee Waltz," "I Thank You" and "I Want To Know What Love Is."

Wynona Judd, like many others, was honored for her involvement with the Lili Claire Foundation. Judd and Moore joined together to sing a phenomenal version of Tina Turner's "I Can't Stand the Rain." Since she was one of the many people being honored for their involvement with the Lili Claire Foundation, Judd sang one of her own songs, "Love Can Build a Bridge," a song she recorded with her mother.