A Diagnosis and a Nurtured Gift
Young Gloria. Photo courtesy of the Lenhoff
family.
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“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.
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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.
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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.
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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.
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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
hlenhoff@uci.edu.
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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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?
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__________________
Sidebar 1
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.
_____________
Sidebar 2
A Special Camp for Special Individuals
By Terry Monkaba
A camp participant during a lesson. Photo
courtesy of the Williams Syndrome Association.
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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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Sidebar 3
Editor’s Note: As plans for this article were
taking shape, EP staffer Jan Carter
Hollingsworth had the opportunity to spend a
delightful day with the Lenhoffs at their home
in Oxford, MS.
A Day with the Lenhoffs
By Jan Carter Hollingsworth, EP Managing Editor
As plans for this feature article began taking
shape as far back as July of last year, Dr.
Howard Lenhoff and I, who struck up a fast and
amicable friendship through our email and phone
correspondence, quickly came to realize that
his home in north central Mississippi was only
a few hours driving time from my home in
Tennessee. So on a beautiful, warm autumn day
in early October, I turned my car southward and
headed towards Oxford, a quaint town full to
overflowing with Southern charm and
hospitality. Home to the University of
Mississippi campus which was still aglow from
the two days past Presidential Debate, I met
the Lenhoffs—Howard, his wife, Sylvia, and
adult daughter, Gloria, at their home. Our big
plans for the day included a speaking
engagement at a class at Ole Miss where Dr.
Lenhoff and Gloria appeared before an attentive
audience of college students. Dr. Lenhoff spoke
of Williams syndrome, Gloria’s innate musical
talent, and the power of a nurturing family in
helping a person with intellectual disabilities
achieve their highest potential. And as
interesting as Dr. Lenhoff’s presentation was,
he knew, better than anyone, that the real
impression was to be made on these young minds,
not by his words, but by Gloria and her voice.
She spoke briefly, answering questions posed by
her Dad for the benefit of her audience. Her
spoken voice is beautiful, devoid of a
regionally-dictated accent, somewhat tentative
and reserved. Then he relinquished the floor
and turned it over to her completely.
And Gloria sang.
With perfect pitch, her exquisite lyrical
soprano projected and filled the jumbo-size
university classroom, and her audience was
rapt. She demonstrated her range and her wit,
moving seamlessly from an Italian aria sung a
cappella to a rousing performance of
Blue Suede
Shoes, self-accompanied on her accordion
and complete with an introduction of the song
spoken in the most perfect of Southern accents,
dripping with drawl, devoid of word-ending
gs—think
singin’.
I had the pleasure of spending the afternoon
with the Lenhoffs, enjoying some local color at
an eatery, The Downtown Grill, located, well,
downtown, on Oxford’s authentic Southern
“square,” where the courthouse sits center
stage and a bronze of Oxford’s most famous
native, William Faulkner overlooks passersby
from the square’s periphery. We enjoyed our
leisurely lunch, and I found myself, as is so
often the case when I’m in the company of
exceptional parents and children, impressed and
inspired by their ability to meet life’s
challenges with gusto and spirit, their ability
to love and accept one another. Dr. and Mrs.
Lenhoff bubbled over with pride as they spoke
of Gloria’s many accomplishments. Disabilities
were not a topic that warranted much time. And
getting to know and talk with Gloria was a
delight. She is a committed professional whose
love of music and willingness to hone her skill
is evident. She’s enjoying the independence
she’s experiencing as she lives away from her
parents at her full time residence in
Frankfort, KY at Stewart Home School. She has
close friends and is pursuing her music, always
looking forward to trips home and to her
upcoming performances.
The Lenhoffs certainly epitomize the picture of
the successful exceptional family.
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Howard Lenhoff, PhD usually called “Gloria’s
Dad,” received his B.A. from Coe College in
Cedar Rapids, Iowa and his PhD in biochemistry
from the Johns Hopkins University. He was a
former Investigator of the Howard Hughes
Medical Institute and currently is Professor
Emeritus of the University of California and
Adjunct Professor at the University of
Mississippi. When he retired, he started his
research on absolute pitch with people who have
Williams syndrome. To contact Dr. Lenhoff email
to
hlenhoff@uci.edu
.
