LIBRARY PRESENTATION ACCENTUATES THE POSITIVE

By Heather Tepe Special to The Baltimore Sun, April 14, 1999.

KYLE ARCHARD is a 17-year-old junior at Atholton High School. He works as a courtesy clerk at the Safeway in Harper's Choice and loves to play the drums. This year, he was chosen as "Mr. Congeniality" in his school's "Mr. A.H.S." contest.

Kyle was born with Williams Syndrome (WS) -- a rare genetic disorder affecting on average one of every 20,000 births.

Children with the syndrome share certain physical traits, including pixie-like facial features -- small upturned nose, wide mouth, full lips, small chin and puffiness around the eyes -- and are shorter than average height.

Most of them have medical and neurological problems, including developmental delay, cardiac and kidney disorders and reduced mental abilities -- from low-average intelligence to mild retardation. They also have difficulty with hand-eye coordination and other spatially related skills.

But that's focusing on the negative. There is also a positive side. Individuals with Williams Syndrome have endearing personalities. They are described as being excessively friendly and extremely polite. Their language skills remain intact and often are heightened. One of the most striking aspects of WS is enhanced ability to enjoy and perform music. Anecdotal evidence suggests that many WS children are musically gifted.

Although a person with WS might not be able to easily tie a shoelace or use a fork and knife, many play musical instruments and memorize hundreds of complicated pieces, without being able to read music.

Scientists studying WS are discovering more about how the brain works, how we learn to speak and how our personalities develop.

This month, the local chapter of the Williams Syndrome Association met at the east Columbia library to discuss WS and the musical connection.

Kyle's mother, Nancy Catizone, arranged for a presentation by Gloria Lenhoff and her parents, Howard and Sylvia Lenhoff of Costa Mesa, Calif.
Gloria Lenhoff, 44, who has WS, is a lyric soprano and accordionist who sings in 25 languages and performs internationally.

She has appeared on "60 Minutes" and "Nightline," and she was the subject of the award-winning PBS documentary "Bravo Gloria."

Howard Lenhoff, a research professor at the University of California at Irvine, received a doctorate in biology from the Johns Hopkins University in 1955. In recent years, his research interests have focused on studying music cognition in people with WS.

He told an audience of more than 30 people at the library: "Today, you will change your views of the cognitively impaired.

"Society focuses on what [people with Williams Syndrome] cannot do, but these people have amazing abilities," Lenhoff said. "We all have peaks and valleys in our brains. We're focusing now for the first time on the peaks, not the valleys, for people with Williams Syndrome."

Gloria Lenhoff sang a pop song and an operatic piece. The Williams youngsters in the audience wore beaming smiles as they swayed gently to her music and applauded enthusiastically after her performance.

One boy shouted, "Gloria rocks!" as others gave her high-fives and thumbs-up.

Members of the audience were invited to perform after Gloria. Jeremy Vest, 13, of Gaithersburg, who has Williams Syndrome, played "The Entertainer" by Scott Joplin on the keyboard -- a difficult piece to master, especially if you can't read music.

He played it flawlessly.

The Williams Syndrome Association and the Williams Syndrome Foundation are working to provide musical education through summer camps and eventually universities for cognitively impaired individuals who show musical ability. It is hoped that WS musicians will teach, perform and become entertainers.

The Williams Syndrome Association operates a summer camp in Lenox, Mass., and plans to open another in San Antonio this spring.

Susan Woda, director of Art Support -- an organization that promotes arts education -- announced at the meeting that her group would award a scholarship to one of the Williams Syndrome-affiliated music and arts
camps this year. That, too, drew cheers from the Williams youngsters. Their parents seemed equally pleased.

"The Williams kids make us into sensitive human beings," Howard Lenhoff said. "Having a Williams child has made me into a much better person than I would have been."

Information about the Williams Syndrome Association or the Williams Syndrome Foundation may be obtained on the Web at www.williams-syndrome.org and at www.wsf.org. Or call 248-541-3630.