A Diagnosis and a Nurtured Gift

Young Gloria. Photo courtesy of the Lenhoff family.

“Your daughter is mentally retarded,” said the panel of psychologists and physicians after having our seven-year-old, Gloria, take a battery of tests. “Take her home and love her.” Love her we did, but none of them had advised us to look for any unusual strengths she might have and to focus on helping her to develop those strengths.

Today professional attitudes are changing. In November 2006, a symposium of experts in the field of mental retardation was held by the Kennedy Center of Vanderbilt University. Their major conclusion: Professionals should focus on what those with intellectual disabilities can do rather than on what they can not do.

My wife and I were fortunate to learn that approach when our daughter was eleven years old. Finally, we had found a professional voice teacher who, from the first lesson, taught our untrained daughter to sing Handel and Mozart without first demanding that she learn to read music. Now with Gloria being taught by university level voice teachers for the past 30 years, we enjoy observing a 53-year-old Gloria performing as a professional musician.

Howard, Gloria, and Sylvia Lenhoff. Photo courtesy of the Lenhoff family.

We also get much pleasure in knowing that Gloria is a music savant, that is, a person with a serious intellectual disability who exhibits spectacular abilities in music. In that capacity, she serves as a peer model for others with intellectual disabilities and has stimulated hundreds of exceptional parents to provide an advanced music education for their children. Some of those younger savants are outstanding performers. The main difference between them and Gloria is that Gloria has had a 30-year head start of taking professional lessons and practicing daily.

Gloria, age 4, listens attentively as her Dad, Dr. Howard Lenhoff, plays the guitar. Photo courtesy of the Lenhoff family.

Gloria was diagnosed with Williams syndrome. Individuals having this rare genetic condition, which occurs in 1 in 7,500 births, exhibit an array of physical and behavioral impairments. Although their mean IQ is 55, they have unusual abilities in language and music.

But you do not need to have Williams syndrome to be a savant. Before I tell you why and how our experiences may affect you and your child, please allow this proud father to brag a little. Today, we can tell you that Gloria is an accomplished lyric soprano and accordionist whose repertoire numbers over 3,000 pieces. Gloria sings in 30 foreign languages, providing music for all tastes: popular, religious, folk, classical, and opera.

Gloria performing at the Kennedy Center. Photo courtesy of the Lenhoff family.

Gloria has an outstanding stage presence, transformed once she is in front of a microphone and audience. She has the rare gift of perfect pitch; if you name a musical note, she will sing that note correctly. She still does not read music.

She first came upon the national scene in the public television, award-winning documentary, Bravo Gloria, directed by Arlene Alda in 1984. Since then, she has been featured on 60 Minutes, Nightline, Discovery Health (2006), The Learning Channel (2006), countless newscasts, and four foreign TV specials, including appearances in Chile, Holland, and on two Japanese channels (2003-04).

In 1994 her achievements helped stimulate the first music camp for those with intellectual disabilities at Camp Belvoir Terrace near the Tanglewood Music Center in Lenox, MA. Seven years later, as an offshoot of the camp, the Berkshire Hills Music Academy (BHMA) opened its doors. The BHMA is the first of its kind, nine-month, residential music academy that serves young people having a variety of syndromes who show musical abilities and interests. The BHMA has completed six academic years and now sponsors its own summer music camps. The Williams Syndrome Association also sponsors a summer music camp in Michigan. ( See sidebar text below.)

Gloria playing her accordion. Photo courtesy of the Lenhoff family.

Through appearances across the country and abroad, Gloria has influenced attitudes about the potential of those with intellectual disabilities. She has sung duets with members of the Los Angeles Opera and the Boston Lyric Opera. Her performance venues have included the Wheeler Opera House of Aspen, CO, the Bardavon Opera House of NY, and the Treasure Island Hotel in Las Vegas. For three seasons, she was guest soloist with a San Diego Community Orchestra (TICO) and the San Diego Master Chorale. Later she was featured with the Baddour Center Miracles choir at the Kennedy Center in Washington, DC. Gloria has soloed in England, Spain, and Israel and is scheduled for a concert in France in 2010. With Opera Memphis in Tennessee, she sang in the Soprano I chorus in Samson and Dalila in 2005 and Il Trovatore in 2007. In April, 2009, she will be in Gounod’s Faust.

Gloria is not stuffy and likes most types of good music. At the Ritz Carlton in Boston she sang and played her accordion with the members of the band Aerosmith. Recently, she wowed the audience as she sang and played the blues with her accordion and the house band at the celebrated “9:30 Blues Club” in Jackson, MS.

If you had asked us 40 years ago if we thought Gloria would ever reach these heights that I now describe, my wife and I would have thought you were dreaming.

Williams Syndrome and Musical Aptitude: The Connection

Gloria was our first child so we thought that her early interest in and love of music was normal, and apparently, it is. Scientists admit that they do not understand yet how infants acquire their abilities and love of music. What they do know, however, is that much of the brain development in the first six years of a child’s life is devoted to the learning and retaining of music and language. It appears that children have an open window, which allows them to effortlessly soak in music and language. That window appears programmed to close at age six, and the brain then shifts to developing new mental tasks, new windows, such as for logical and mathematical thinking.

My scientific colleagues have gone one step further and use the window analogy to explain why adults with Williams syndrome possess those remarkable music abilities that normal children lose around age six. Although what I describe in the next few paragraphs deals with Williams syndrome, it also may apply to children who have other syndromes that include intellectual delay, but are, in varying degrees, musically talented.

The body and brain of children having Williams syndrome develop atypically because all of the cells in their bodies lack 20 specific genes. It is the absence of those genes that determines their unique physiology and behavior. The processes that normally would close the window in the brain for learning and retaining music are among those which become damaged. We could say that in individuals with Williams syndrome, the mechanism for closing the window for musical aptitude gets jammed, and it stays open even in adulthood. It is this jammed window, we think, which accounts for them continuing to have those remarkable and large musical capacities normally possessed only by young children.

The window analogy could explain why Gloria still acquires, retains, and recalls music quickly. Her mind does not become cluttered with all of the cognitive activity that occurs with most adults attempting simultaneously to read and perform music. This trait, which I once thought was unique to people with Williams syndrome, is also exhibited to varying degrees by individuals whose brain mechanisms are altered by other genetic conditions.

For example, I am aware of musically talented individuals having Down syndrome, the chromosome 22 q 11.2 microdeletion, and some rarer syndromes as well. More recently, there have been reports of music savants with prodigious memories who are blind and have intellectual disabilities. Some have retinopathy of prematurity, a disease of the eye that affects babies born prematurely, or optic nerve hypoplasia, a condition that results in underdevelopment of the optic nerve in the eye.

Others showing musical abilities are those who have experienced traumatic brain injury while infants from severe accidents or as a result of a congenital infection. Possibly these environmental shocks to their systems and the effects of an array of genetic errors, may also jam the window open for taking in music information. If you know of others, please write about them to .

Nurturing Your Child’s Ability: What Parents Can Do

Many parents who have children with Williams syndrome ask me for tips on how to help their children hone their musical abilities. Here are some questions and answers.

• How old should my child be to start? It doesn’t matter if they’re six, 16, or 36. Younger may be better, but all those ages are fine because the window of opportunity to learn music remains open into adulthood.
• How do we know when to start? Make it easy for your child to hear a wide variety of music—classical, religious, and pop. As your children develop their motor skills, help them play such simple instruments as xylophones. As they get older, you may want to give them their own CD and DVD player and eventually an i-Pod.
• What next? Once your child shows some talent, encourage your child to sing and perform for and with family and friends. If you or your other children play instruments, start to play music together, giving each child a chance to star. We recall these moments as some of the happiest of our lives. We especially enjoyed Gloria and her brother as toddlers entertaining us after supper by dancing and singing on their special “stage” – our dining room table.
• Do we need to purchase any musical instruments? Nothing major at first, but you might get a variety of simple rhythm instruments. For example, when teenager Gloria performed at home for family and friends, we helped motivate her and also get everyone involved by having them play along with simple rhythm instruments, such as a toy or professional tambourine, toy castanets, maracas, a variety of rattles, or clusters of bells. Others can beat the rhythm with two sticks, a toy drum, or by striking pots and pans with wooden spoons! Gloria enjoys performing for friends and family who join in by simply clapping their hands.
• As they get older, how do we select an instrument for them? Find one that your child enjoys and that fits his or her physical, motor, and cognitive abilities. Voice training is a good way to start. As Gloria likes to quote, “Voice is the only instrument made by God.” Next in popularity are keyboards (piano, electronic, and/or accordion), drums, and some wind instruments such as clarinet and saxophone. Many musicians I know who have Williams syndrome have extraordinary abilities in singing and playing those instruments. Until a few years ago, I thought that string instruments would be difficult for musicians with Williams syndrome because of their motor challenges, but a fair number of them have proved me wrong showing skills with the guitar and violin.
• How do we find a music teacher for our child with intellectual disabilities? I suggest that your child take private lessons rather than group classes. Avoid rigid teachers who insist on requiring the student to read music. You might look for a bright and warm high school or college student; try advertising in a local school newspaper. A good teacher, once informed of your child’s abilities and disabilities, should be of great help. If not, try another until you find the right one for your child. Gloria is fortunate that she has two first rate professional musicians who come teach her at the Stewart Home School in Frankfort, KY where she now lives.
• Will technology help? It does for Gloria. She records all of her lessons and exercises and listens to them as guides while practicing. Studying recordings is especially helpful in learning to sing in foreign languages. As your child becomes more proficient, you may find yourself purchasing Karaoke machines, microphones and stands, and speakers. But one thing at a time. You will know when.
• What is our role ? Parents need to be supportive, provide encouragement and praise, and serve as fervent advocates. Show me an child with intellectual disabilities with well developed musical abilities, and you will always find exceptional parents offering support, opportunities, and encouragement. And isn’t that what this magazine is all about?

The Strangest Song

For more about Gloria, read The Strangest Song, by Teri Sforza, Prometheus Books (2006). This book is available in the EP Bookstore at www.epbookstore.com.

A Special Camp for Special Individuals

By Terry Monkaba

A camp participant during a lesson. Photo courtesy of the Williams Syndrome Association.

A small corner of Aman Park in the outskirts of Grand Rapids, MI comes alive with a special brand of music, fun, and education for three weeks each summer. During one week in June and two weeks each August, the Williams Syndrome Association (WSA) welcomes up to 100 individuals with Williams syndrome (WS) and similar characteristics, ages six to adult from throughout the U.S., Canada, and (to date) Ireland, England, Japan, and Holland, to Whispering Trails Camp. Depending on the camper’s age, they participate in music therapy (6- to12-year-olds) or music instruction and performance (13- to 30-year-olds) in combination with traditional camp activities. Eligible adults, who are at or beyond the maximum camper age, can elect to participate in CIT and leadership training programs, which are also held at the camp.

Whispering Trails Camps provide a four- to ten-day residential experience that is rich in music, recreation, and physical activity. The program is steeped in music, dance, and art, providing private and group music lessons in drums, piano, guitar, recorder, and voice as well as band and chorus sessions. The camp sessions strive to maintain an atmosphere that encourages creativity and recognizes the importance of the individual. Classes are led by professionals who have extensive experience with recreation or the arts as well as in working with individuals with special needs. Swimming, archery, outdoor games, and canoeing as well as a fully accessible low ropes course and climbing wall combine to fill the campers’ days with great outdoor activities, increasing self-esteem, group participation, and independence skills. In addition to daily music and recreation activities, campers enjoy basketball tournaments, evening camper performances, campfire sing-a-longs, professional entertainment, and an all-camp performance at the culmination of each camp session.

At the end of their session, campers have not only made new friends and enriched their lives through music, they also return home with confidence, music lesson ideas, craft projects, and a countdown until camp re-opens next year. But it’s more than that. As one young man put it, “Camp Rocks!” The staff agrees. In the six years the camp has been in Grand Rapids, employee turnover has been just 5-10 percent each year. Last year, two staff members returned while pregnant. This summer we may need a nursery!

Williams syndrome is a rare genetic disorder with a unique profile that nearly always includes a love of music. For some individuals, there is also a natural music ability which, when nurtured, can blossom into a musical talent which far exceeds the individual’s skill level in other areas. Convinced that there was more musical talent in the WS community than that of his daughter and a few others, Dr. Howard Lenhoff began to search for a music camp that would host a session for those with Williams syndrome and begin the process of locating individuals and providing a week of music instruction and camp fun each summer. In 1992, the first music camp was held at Belvoir Terrace, a fine arts camp for young women, which opened its doors to individuals with Williams syndrome following its regular summer program. After 10 years at Belvoir Terrace, the camp relocated to Grand Rapids and added a session for younger children, ages 6 to 12. Our young campers are joined by an adult (parent, relative, etc.) and enjoy a music therapy-based program (instead of music performance) as well as age appropriate recreational activities.

In 2008, following 15 successful years, a CIT and Leadership Training Program was added for adults over 30. Directed by a therapeutic recreation specialist, who has several years experience working with individuals with Williams syndrome, the program aims to help adults gain self-determination and leadership skills. Those who are qualified and interested can also train to be counselor assistants and full-fledged counselors at the camp.

The Williams Syndrome Association strives to enrich the lives of individuals with Williams syndrome and similar characteristics through support, education, and research. The camp programs play an important part in helping the WSA achieve its mission.

To learn more about the WSA camp programs, call 800-806-1871, email tmonkaba@williams-syndrome.org or visit www.williams-syndrome.org

Terry Monkaba Is the Executive Director of the Williams Syndrome Association.

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