Williams Syndrome: A Study of Unique Musical Talents in Persons with Disabilities

Fall 2000 Masthead


Sally M. Reis, Robin Schader, Laurie Shute, Audrey Don, Harry Milne, Robert Stephens, and Greg Williams
University of Connecticut
Storrs, CT

“The more a teacher is aware of the past experiences of students, of their hopes, desires, [and] chief interests, the better will he [she] understand the forces at work that need to be directed and utilized for the formation of reflective habits.” (Dewey, 1939, p. 615)

 

Smiling, sociable, and often musically adept, persons with Williams Syndrome (WS) have only recently been recognized as a distinct group of people with talents and needs that may differentiate them from people with other disabling conditions. Music & Minds, a 10-day residential program at the University of Connecticut, was based on talent development practices from the Schoolwide Enrichment Model (SEM). Participants’ individual learning styles, prior experiences, patterns of talent development, and educational needs were considered in the development of appropriate programming (Renzulli, 1977, 1994; Renzulli & Reis, 1985, 1997). In particular, emphasis throughout Music & Minds was on the interests of participants, since research studies in a variety of fields have shown that learning is easier and more productive when people are able to work in an area of their own selection. Music was integral to all aspects of the program.

Why Williams Syndrome (WS) and Music?

Incidence of WS is estimated between 1 in 20,000 and 1 in 50,000 (Gorman, 1992). WS is evident at birth, occurs in all ethnic groups, affects males and females equally, and has been reported throughout the world (Pober & Dykens, 1993). Individuals with WS typically have cardiovascular abnormalities, short stature, and Full Scale IQs in the mildly to moderately mentally retarded range (Udwin, Yule, & Martin, 1987). Einfield and Hall (1994) described the “typical facial appearance, the so-called ‘elfin’ facies, with an upturned nose, sometimes called retroussé with a rather bow-shaped mouth. Abnormal dentition is always present. There is often a particular iris pattern [in the eyes] described as star shaped or stellate” (p. 276). Although individuals with Williams Syndrome have below average IQ scores, they have unique cognitive profiles characterized by relative strengths in language and music, which contrast with extremely poor visuospatial and visuomotor skills (Don, Schellenberg, & Rourke, 1999).

It is only recently that musicality in WS has been a focus of interest for researchers; however, love of music has been anecdotally associated with WS from the time the syndrome was first described. In an early report delineating the psychological characteristics of the syndrome, each child was noted to be musical (von Arnim & Engel, 1964). In another early case study, music was reported to be the child’s “truest love” (Anonymous, 1985, p. 968). More recently, researchers initiated formal and informal studies of music in WS at Belvior Terrace, a Massachusetts summer music camp that added a special week for individuals with WS. Lenhoff (1996), a scientist and parent of a child with WS, reported that the WS campers exhibited high interest and responsivity to music, facility with complex rhythms, strong lyric memory, ease with composing, and a higher incidence of absolute pitch than seen in the normal population. Within the group, several campers stood out for specific accomplishments in music. Levitin and Bellugi (1998) tested rhythm production skills of 8 music camp attendees with WS (mean age 13.4 years) and found them equivalent to typically developing children of age 5 to 7 years for a number of correct responses, but more musical when responding in error. Don et al. (1999) used standardized tests of melodic and rhythmic discrimination as well as structured interviews to assess music skills of 19 children with WS (8 to 13 years). In contrast to earlier studies, these children were not selected because of their musical skills or interests. Results showed that music skills in the children with WS were at levels expected for vocabulary age peers. Tonal discrimination was equivalent to the control group, but rhythmic discrimination, though within expectation for receptive vocabulary age, was poorer. Musicality in the WS group was most frequently expressed by interest in music and emotional responsivity to music. The WS group expressed higher interest in music and greater emotional response, being made both happy (100% vs. 84%) and sad (79% vs. 47%) more often than the control children. Thus, as parents and clinicians have reported, music is an area of special interest and responsivity in many persons with WS.

Unfortunately, persons with WS are viewed as disabled, and previous research has focused on genetic, medical, linguistic, and psychological deficits. Educational programs have generally focused on their disabilities and failed to provide opportunities for the specific identification and development of the unique musical talents observed in many persons with WS. The absence of a systematic approach to talent development in persons with WS that takes into account both their strengths and limitations has placed this entire group at an educational and occupational disadvantage. To counter this lack, Music & Minds was designed to investigate effective teaching practices in relation to the musical abilities, interests, and learning styles in the WS population.

Case Study of One Participant

Charles is 24 years of age. Charles was diagnosed with Williams Syndrome when he was 2 years old. Once identified, he was referred to a nearby association that had an early intervention program. He attended the program 4 days a week for 3 years. On the fifth day he slept because, as he explained, even though he enjoyed it, the program was very tiring. He next attended a local kindergarten where he began special physical and occupational therapy that continued until he was 12 years old. The local middle school had no appropriate program for students with special needs, so Charles was enrolled in a self-contained special education school in a nearby town where he stayed until he was 21 years old. In school, Charles performed poorly in mathematics, and hated work sheets. He still has difficulty writing and solving equations. He uses a calculator. However, he can count to 1000, and sort music tapes and cassettes by musical category, having developed the latter skill while working at a music store. He tells time with and without a clock; “it is a rhythm thing.” He enjoys reading The Hardy Boys, Scottish novels, British heritage books and magazines, and romances.

From age 3, Charles demonstrated his musical talent by singing “Sesame Street” songs in both English and Spanish. He has had access to a piano since he was young. When he was 6 years old, his cousin gave him a Pavarotti record and Charles began to play along on the piano prior to any formal lessons. He has demonstrated perfect pitch, and has developed the ability to follow musical notation once he has heard the music played. “He relates to the ups and downs of print,” his mother explained. At age 13, he began regular drum lessons, and later became a full member of a local Scottish Pipe Marching Band, where he has been promoted to (snare) drummer first class. He plays his instruments (snare drum, piano, keyboard, bagpipe chanter, and saxophone) for at least 2 to 3 hours a day, and listens to his records, CDs, and tapes for at least 4 hours.

Currently, Charles is completing a 3-year residential post secondary program focusing on independent living skills. Although he frequently says that “music is my life,” it is not available at this 3-year program. At this time, employment possibilities for Charles are scarce and his family worries what might be available for him as he grows older.

 

The Music & Minds Program

Music & Minds was open to young adults (ages 18 to 29) with Williams Syndrome who exhibited interests and or talents in music. Sixteen individuals (8 males, 8 females) were invited to participate in the 10-day residential summer program held at the University of Connecticut during the summer of 1998 and 20 participants attended Music & Minds in 1999 (12 males, 8 females). The summer 1998 project was supported by the United States Department of Education, Office of Educational Research and Improvement, under the Javits Act. Educational psychology professors specializing in gifted and talented education organized the program and were joined by music, drama, and creative movement faculty. Allied health and physical therapy professors analyzed physical limitations, and developed individualized plans for increased mobility and physical fitness in the participants.

Daily classes in chorus, general music, individual instrument or voice, movement, drama, and math were part of the multi-faceted program. Evenings and weekend enrichment activities included an in-house musical night-club, field trips to hear and play the local Carillon, and participation in an evening drumming session. Students were housed in double rooms and ate meals in the University cafeteria. Throughout the program, emphasis was on the joy of learning new skills and sharing accomplishments. A public performance reflecting all aspects of Music & Minds was presented by the participants on the final day.

Using Enrichment Programs

The conceptual framework of Music & Minds was based on components of the Schoolwide Enrichment Model (Renzulli, 1994; Renzulli & Reis, 1985, 1997). The SEM has three major components: analyzing students’ talents, interests, and learning styles to identify patterns; modifying curriculum to address unique interests, abilities, and styles; and providing a series of planned enrichment opportunities based on the Enrichment Triad (Renzulli, 1977). The Triad, with over 20 years of research and development, is the cornerstone of the SEM program.

The underlying theory of SEM is Renzulli’s (1978) three ring conception of giftedness, which focuses on the development of three interrelated clusters of traits (above average ability, task commitment, and creativity) as applied to a particular area of interest or talent. Approaching talent development in this way seemed particularly appropriate for use with persons with WS, who demonstrated interest in music, but required educational opportunities in other areas. SEM encourages creative productivity in young people by exposing them to a variety of topics, areas of interest, and fields of study; and trains them to apply advanced content, process-training skills, and methodologies to self-selected areas of interest.

Instrumentation and Results

Instruments used during Music & Minds were adapted from enrichment programs and used to identify interests in young people. Instruments such as “The Learning Styles Inventory” (Renzulli, Smith, & Rizza, 1997), “The Secondary Interest-A-Lyzer” (Hébert, Sorenson, & Renzulli, 1997), and “My Way…An Expression Style Inventory” (Kettle, Renzulli, & Rizza, 1998), along with personal records, anecdotal reports, checklists, and questionnaires, were used to collect information to develop appropriate programming for participants.

Parent reports, self-report, psychological testing, and school records indicated below average, but relatively strong verbal skills, such as vocabulary and memory. By contrast, participants demonstrated notable deficits in math abilities. Although participants’ math skills were low, particularly in the area of fractions, they accurately used basic arithmetic facts and, to varying degrees, could add and subtract. Participants revealed poor self-concept with regard to math skills and were hesitant about their ability in this area. Parents reported that participants lacked basic math skills, and math was rarely applied in daily living, such as counting change when making a purchase.

Responses to assessment instruments revealed participants’ strong preferences for discussion, verbal drill and recitation, lecture, simulations, peer teaching, and teaching games requiring demonstration and or verbal responses. In addition, their preferred expression styles were oral, dramatization, and music. With this in mind, lessons were developed that incorporated visual aids, games, lectures, discussions, and simulations.

Application of SEM to the Teaching of Fractions

The content of the Music & Math curriculum revolved around identifying equivalent fractions, understanding components of fractions, and practical applications to time, money, measurement, musical notes, and objects. Teaching of fractions was not taught theoretically or in isolation, but was tied to daily living. For example, students were asked to locate and identify the building halfway between a home and a shopping center on a town diagram.

Music was used as an instructional methodology and learning tool. A piano and drum set were present in the classroom and used by instructors, guest artists, and participants throughout the treatment. At appropriate moments, the piano provided parallel sounds and rhythms to the discussion of fractions. This was evident during the opening discussion where the piano helped illustrate the relationship between a fraction’s denominator and numerator. For example, the concept of one-fourth was enhanced by playing four (4) quarter notes to represent the denominator and one (1) quarter note to represent the numerator. The difference between one-fourth, one-half, and one-whole was also demonstrated using musical notes and sounds. These differences were intensified by using rhythmic lines with clapping of hands and stomping of feet.

To strengthen memory, students created rhythmic “songs.” These little musical ditties stemmed from the various rules or dimensions of fractions. One example was “To • tal • eq • ual • parts” (G-G-G-G-C) played as four quarter notes followed by a whole note. Students applied this rhythmic line to remember the meaning of the denominator, and instructors hummed the notes in rhythm (without words) as a prompt when needed during classroom activities. Musical variations were used to relate fractions to real world situations.

The Music in Music & Minds

Music & Minds was designed on the premise that music is a form of discourse that should be at the core of musical study, experience, and the music education of our WS participants. What did we learn about our participants with WS during Music & Minds? Prior experience had provided clear evidence that musically talented persons with Williams Syndrome often taught themselves to play a musical instrument—the drums, guitar, or perhaps the piano. They usually already knew the kind of sound in which they had an interest. They insisted on the right equipment. They listened to their mentors and tried to emulate them, and although they often ran into problems of sound production and control, they were able to find their own way through them, comparing notes with fellow practitioners. They often followed the example of preferred models. Throughout the program, participants were encouraged to move beyond a preexisting emphasis on performing by extending their musical understanding and techniques to include perceptive listening, improvisation, and composition.

Music classes included composing-listening, performing-listening, and audience-listening within a musical and cultural range wide enough for students to appreciate music beyond what they had previously experienced. Smaller groups than whole-class or whole-band or whole-chorus were found to be essential for student interaction, musical decision-making, and individual choice and were incorporated into larger classes. Curriculum was broadly defined rather than written in advance, so that it could be quickly adapted to the individual circumstances and daily challenges.

To identify how many participants had achieved various levels of ability in music, we operationally defined musical ability as “the ability to understand and improvise in music, as well as the high level of skills, both present skill areas and potential, that can be developed in music.” We identified 5 participants as having high skill and potential. Another 5 participants were identified as having mid-level skills or potential, and 6 participants were described as having low performance or potential. Approximately 12.5% of our participants demonstrated perfect pitch and 25% demonstrated relative pitch.

With the exception of one participant, the most musically able participants had good word reading skills. All participants who displayed high levels of musical ability had similar patterns of home support, with early lessons and encouragement in music. Their parents provided continuous reinforcement for musical training and musical exploration. Participants who were lower in musical performance had parents who also provided a great deal of encouragement and support, but not in the area of music.

By offering persons with WS broad and deep musical experiences, we may be able to significantly increase the possibility that they will engage in a wider variety of talent development activities in these areas. We may also enhance their understanding of what is taking place musically and extend the musical skills that are available for their personal and professional use.

Educational Issues
Three findings from Music & Minds are critical. The first is that the individual within-syndrome variability in our groups of participants with WS was so large that group described traits are likely to be deceptive. Therefore, individual assessments of each child should be periodically performed to note the change and progress of the individual. For example, while most of our participants were extremely outgoing and friendly, some were shy and reserved. Seven participants appeared to be primarily auditory learners, 6 were more visual learners, and others were mixed. Several high-functioning participants had accurate appraisals of their abilities as compared with their chronological peers, and other young persons with WS. Although most were not particularly bothered by their deficits, and did not make external comparisons, higher functioning individuals appeared more susceptible to performance anxiety.

The second finding is that we must avoid the usual assessment stance of looking for disturbances or negative symptoms. While school psychologists are not usually inclined to look for positive behaviors, it is the positive behaviors that might act as a base to build constructive educational plans for this group. The teachers who interact with these children daily are usually well aware of the negative symptoms and could profit from knowledge of the potential to be discovered through positive traits.

Another important finding was that many of the participants were limited by firm, and sometimes inaccurate, beliefs about their ability to learn. Participants consistently told us what they could not do, such as “I can’t measure,” “I can’t cut (with scissors, or with knives).” One young man had an acute physiological reaction to taking the pretest in math, sweating and repeating “I can’t do this at all!” Several participants had distinct, rigid ways of doing things and could not break the pattern. “I have always done it this way and I can’t change.” This rigidity of style also appeared within music.

Accordingly, based on what we learned in Music & Minds, the following considerations should be taken into account in implementing programs for this unique population.

  1. All participants displayed what may be described as a romance with music and rhythm. The absence of music in their school experiences and sometimes in their home life resulted in the loss of opportunities to find and develop their potential talent areas and also to find joy in their lives. Music could be used as a powerful teaching tool throughout school years to help develop skills in deficit areas.
  2. Parents generally were realistic about the academic strengths and weaknesses of their children and were able to provide specific information about their abilities within content areas such as reading and math.
  3. Parental involvement played a key role in the development of musical talent. All the participants who displayed the highest levels of musical ability had extensive home encouragement.
  4. Instruments focusing on learning styles, interests, and product style preferences that have been developed for general populations were easily adapted and helpful in identifying the interests, learning styles, and product preferences for individuals with Williams Syndrome.
  5. Differences in living skills within this group should be recognized. Some participants were already extremely independent and needed to have flexibility and respect for their ability to live as almost self-sufficient adults. Others required much more support and help, but, when encouraged, quickly moved towards relative independence in some areas. Prior limiting expectations should be avoided.
  6. The curriculum should not be planned in great depth in advance for this special population. Major themes should be identified, but the goal should be to develop curriculum around the interests, styles, product preferences, and abilities of each student.
  7. Some deficits can be addressed and overcome through the use of strengths and interests. Math gains were made by a group of our participants when music was used to teach math.

Our experiences in Music & Minds were extremely gratifying for both participants and observers, but these experiences should extend beyond a 10-day summer program. By engaging the love and appreciation for music in persons with Williams Syndrome, we may increase confidence and abilities in academic areas. Purposeful development of musical skills has the potential to extend the talent potential and help enrich the lives of persons with Williams Syndrome.

Reference
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