What would you think if you heard that a person with a tested IQ of 55 could sing in dozens of languages and many musical styles including operatic arias? That a child of 6 could pick up a child-sized accordion and play songs with no instruction? Such is the case of Gloria Lenhoff who has Williams syndrome.
Until I read The Strangest Song by Teri Sforza (Prometheus Books, 2006), I would have been incredulous. Gloria was not formally diagnosed until age 30. She was physically and mentally challenged, but doctors didn’t understand what was wrong. It wasn’t until the 1990s that Williams syndrome became widely recognized and studied. The lack of a label may have been a blessing in disguise, as her parents, especially her father Howard, once they recognized her passion for music and natural talent did all they could to nurture this bright side of their “strange” daughter. If Howard had been given the diagnosis of Williams syndrome with its list of disabilities and negativity spouted by doctors, he probably would not have been the advocate for developing this trait. He challenged his daughter to be her best, and she rose to his expectations.
Williams syndrome is a genetic defect on Chromosome 7. This was not discovered until the mid-1970s. The majority of people with the syndrome have some heart abnormalities, joint problems, poor vision, inability to comprehend simple math, poor spatial perception among other problems. Just as in Down syndrome, the facial features are distinctive. Once you have met a Williams syndrome person, you can easily identify others with the syndrome. They are small in stature with an elfin face (turned up nose, wide mouth, oddly spaced teeth). When Gloria was 30 and finally told she had the syndrome, she and her father attended a picnic in the park of a support community. Howard didn’t know exactly where the group was in the park, but when a child ran past that startled him because she looked just like Gloria had at that age, he simply followed and he and Gloria found themselves surrounded by mini Glorias.
Howard heard anecdotal evidence that convinced him that there was a link between the genetic disorder and unusual musical talent. He was a scientist, and he tried to get the researchers to study this phenomenon. It was quite apparent that Williams syndrome children had an unusual interest in music. At early ages (even 3 months in one case), as soon as they heard music played or sung they focused raptly on the source. They had poor attention span most of the time, but they could listen to music for hours, with a look of joy on their faces. Eventually, some testing and studies were done. There were some savants like Gloria who once they had listened to a song several times, even in foreign languages, could sing it back flawlessly. She proved to have perfect pitch as well, as was the case for many Williams people. Those whose parents fostered this interest in music by presenting opportunities to play instruments or have voice lessons performed well despite the fact that they could not read music. A few managed to read music after many years of study, but most never could grasp it. If taught by Suzuki-type instructors on one-on-one teaching that was willing to ignore standard pedagogy, the Williams people progressed well. Remarkably, they retained the music from then on. The repertoire stayed fresh and accessible even decades later. Oddly, a trait of Williams syndrome is an over-sensitivity to sound. They can hear whispers from quite a distance, making out every word.
These children were a delight to work with. They performed the music they had learned by rote repetition with great expressiveness and phrasing. They picked up the tunes quickly. In one test, Williams people were tested against controls of normal children who had had music lessons to see how well they did with rhythm. Most mentally challenged children are unable to correctly copy rhythmic patterns. The Williams children blew the results out of the water. When they were tested for language/vocabulary abilities against Down syndrome children, the Down children gave simple answers in 60 seconds like fish, dog, cat. The Williams children gave answers like ibex, tyrannosaurus, armadillo. However, further testing discovered that though they had large vocabularies and understood roughly the meaning, they did not pick up on nuances. They were also unable to understand irony or sarcasm. To them, if it was as if a person was telling a lie.
Besides this musical facility, Williams people had an unusual ability to remember faces. They were friendly and empathetic to a marked degree. Sadly, they recognized that others saw them as strange. They could not fit in in a normal way. Daily life presented many challenges. Unable to understand mathematic concepts, they could not handle money. They got lost every time they went to a mall, no matter if it was the hundredth time. They got lost on academic campuses. Changes on a bus route caused problems.
They beamed when their musical talent was applauded; Williams people have a deep desire to please. During some of the tests, the researcher had to keep a poker face because any nod of the head or smile would be interpreted as being pleasing, and they then would do whatever they thought had brought that response. They followed instructions well, but needed explicit instructions. At a music camp established for them, the counselor who had them moving to music, told them to go toward the opposite wall. Normal children would have turned around once they reached the wall and kept going. The Williams children stood there for minutes staring at the wall until the adult realized what was happening and told them to turn around and continue moving.
Howard Lenhoff’s dream that his daughter could somehow make a living from her music didn’t happen. She sang at concerts, including at some symphonies, and played her accordion in groups, but they were sporadic and usually poorly paid gigs. If you Google Gloria Lenhoff, you can see some videos of her performances. She moved to an institution with group homes in Mississippi from California and her parents followed since they were retired. I see on the internet that she was as of 2011 in Stewart Home School in Frankfort, Kentucky; Howard died that year, also. She was still taking advanced music lessons, still unable to read music, but still wowing people with her musical abilities. She will be 60 years old next February.
Williams people create tantalizing questions about how much of personality and ability is genetically based. Also, it appears music is compartmentalized in the brain in ways scientists had not recognized before. Perhaps, by studying Williams people, scientists could better understand the workings of the human brain, but not much has been done since the 1990s.
The book made a point of expressing that what we term as disabled may be more accurately thought of as differently abled. The mystery of being human and all that entails seems to run a gamut, and each expression of humanness is valuable and to be treasured.
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