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People with a mysterious disorder attend a
Massachusetts music and arts camp every year to revel in
music, which for them is not just a pleasure but a passion.
By DAVE SCHEIBER
© St. Petersburg Times, published September
6, 1998
LENOX,
Mass.
Here in the gently rolling Berkshire hills of Western
Massachusetts, the landscape blossoms with lush foliage and
a legacy of music.
This is the picturesque region James Taylor sang of in his
classic Sweet Baby James. It is the area where Arlo Guthrie
drew the ire of police for littering, inspiring his
legendary anti-war saga, Alice's Restaurant. It is the
place the Boston Symphony Orchestra calls home each summer
at the internationally renowned Tanglewood festival.
But for the past five years, the musical personality in
these parts has evolved with new depth and significance.
Nestled on a wooded ridge in the 200-year-old town of
Lenox, Belvoir Terrace Fine & Performing Arts Camp has
become a magnet for professional musicians -- and leading
geneticists.
That is not because Belvoir Terrace, with its world-class
instructors from Juilliard to Berklee School of Music and
beyond, ranks as one of the country's top music and arts
camps. The intense interest is tied, instead, to a one-week
gathering that follows the regular camp session.
Every August, Belvoir Terrace opens its doors to some 50
people who have a rare genetic condition called Williams
Syndrome. They share a unique array of traits that include
heart problems, a pixie-like facial appearance, mental
ability from low average to mildly retarded, excellent
verbal skills, a gregarious demeanor. And one more thing: a
passion for music.
The man who identified the syndrome in 1961, a New Zealand
doctor named J.C.P. Williams, knew nothing about the music
characteristic. Several years after publishing his paper on
Williams Syndrome, he was spotted boarding a train in
England, never to be seen or heard from again.
But while mystery enshrouds Williams himself, scientists
are painstakingly peeling back the mystery surrounding
Williams Syndrome. What they have found is critical not
only to helping people with Williams; the research is
providing important insights about how the brain works, how
we learn to speak, how our personalities are formed.
Scientists are fascinated by the remarkable verbal skills
of most Williams people. They are confounded, too, by the
music connection. Many Williams individuals have perfect or
relative pitch. Almost all have a love of music that
approaches the spiritual.
"Music lights a fire in me and I feel it go right through
my system!" says Christian Lawson, 24, a pianist from
Connecticut. "It's like I'm in paradise."
Paradise
Beneath a thick canopy of maple, white birch and pine trees
at Belvoir, landscaped in part by the man who designed New
York's Central Park, the hills truly are alive with the
sound of music.
In bungalows, with little signs outside practice rooms
labeled "Carnegie Hall" and "Lincoln Center" and "The
Bottom Line," voices singing pop and classical mingle in
the cool New England air with echoes of piano minuets,
clarinet solos and rhythmic drum riffs.
The spacious drama studio bustles as Williams Syndrome
Music and Arts campers work with professional instructors
to rehearse adaptations of Broadway hits My Fair Lady and,
fittingly, The Sound Of Music, for a Saturday night grand
finale.
Sitting in the bleachers during a rehearsal, Terry Monkaba
watches her son Ben, 12, on the floor below and smiles.
Monkaba is executive director of the 7,500-member Williams
Syndrome Association. Ben, an adorable orange-haired boy
with boundless enthusiasm, had multiple heart surgeries
before he was 2. He is small for his age, fragile-looking.
But Ben stands tall musically. As a drummer, he handles
complex 5/4 beats and advanced stylings. As a singer, he
projects joy and presence. Finishing his solo of Do-Re-Mi,
Ben displays a stage persona as big as P.T. Barnum,
yelling, "Yeah!" and thrusting two thumbs skyward.
"I look around here this week and there are 57 kids," says
Monkaba. "Are there 57 ultra-talented kids here? No," she
says. "Are there 57 kids who really are touched by music?
Absolutely. And I think that's the key."
Ben and his fellow campers have just breezed through their
parts with one of several film crews hovering over them.
The campers are at home before the barrage of film crews --
from Nightline to French public television. Most are hams
at heart with ample media experience. Last year, 60 Minutes
filmed a segment. Two years ago, noted neurologist Dr.
Oliver Sacks was here to film a BBC documentary. Sacks,
whose PBS special Oliver Sacks: The Mind Traveler will
feature Williams Syndrome on Sept. 15, told the Boston
Globe: "I haven't seen this much group enthusiasm for music
since seeing a Grateful Dead concert."
Awareness of Williams Syndrome is growing. A national
convention is held every other July, and a Southeastern
regional meeting will be held in St. Petersburg next month.
Much is still new and unfolding. It wasn't until 1993 that
the link was established between music and Williams
individuals. That, in turn, paved the way to the creation
of the camp a year later. Undergirding it all is the notion
of discovering untapped potential in any person with
special needs.
"We have found ways to understand Williams people and that
has allowed us to help them realize potential that was once
never thought possible," says University of
California-Irvine professor emeritus Dr. Howard Lenhoff,
who helped create awareness of the connection between music
and Williams Syndrome. Lenhoff's work was fueled by his
43-year-old daughter, Gloria, an acclaimed Williams
performer who can sing powerfully as an opera soprano in 25
languages.
"The same principle applies with other handicapped people,"
Lenhoff adds. "Everybody focuses on what they can't do
instead of what they can."
The Church On The
Hill
An air of excitement pulses through the well-worn wooden
pews inside one of the oldest churches in Massachusetts.
The Church On The Hill is aptly named. Perched atop the
main street of town, it has presided over Lenox since 1806.
This is a special day for the historic church, whose
pastoral, post-Revolutionary War cemetery adjoins the
Belvoir Terrace property.
A van has
just arrived from the camp next door, and 16 eager people
with Williams Syndrome take their seats. It is the first
time that Williams campers have staged a public show in
Lenox, and several dozen residents have turned out to
watch.
One by one the campers happily introduce themselves and
perform their pieces. John Libera, a 17-year-old from
Massachusetts, studiously grasps his clarinet and eases
through Leonardo Vinci's Sonata No. 1. The crowd applauds
wildly as Libera motions to his piano accompanist from the
camp staff. Little Ben Monkaba from Michigan throws his
whole body into a spirited rendition of I've Got No
Strings, and thrusts his thumbs sky-high to a huge ovation.
Christian Lawson announces calmly, "I'm doing the Skye Boat
song; I hope you like it, it's real pretty." He plays it
beautifully on the piano, then stands and salutes his
appreciative audience with a full military flourish.
The musical love fest continues for an hour -- Gloria
Lenhoff of California enchants the gathering with Puccini's
O Mio Babbino Caro; Kate Bove of Vermont, a pixie-ish
10-year-old, dips and waves gleefully through Rodgers and
Hammerstein's My Favorite Things; Meghan Finn, a Michigan
21-year-old, offers a smooth, sultry adaptation of Bette
Midler's version of The Glory of Love; and 19-year-old
Canadian Lisa Walsh displays a soaring, show-tune voice on
another Rodgers and Hammerstein tune, I Have Confidence.
It doesn't take long to see that the campers revel in the
music and thrill of performing. But the biggest reaction
always comes from campers simply watching the show: They
high-five and cheer in an uninhibited display of support
and pure joy.
"Their expressions when the music moves them are just
magic," says Ann Breen, visiting from Ireland with her
husband and their 15-year-old daughter, Karen, a new
Williams camper. Breen started her country's Williams
Syndrome Association from scratch a decade ago. It has
grown from two to 44 families.
"When I came here, I expected to teach, and the remarkable
thing is what the kids have taught me in return," Keith
Spencer, a professional opera baritone and a camp vocal
instructor, says after the show. "Sometimes when you're a
professional performer, you're so worried about learning
the music and making everything precise. But these students
sing for the love of the music."
The road to camp
Of course, there would be no public performance, no music
camp at all for that matter, if not for the work of several
Williams parents sitting inside the church this day. They
weave a story typical of the Williams experience -- of
parents pushing for answers when there seemed to be only
bleak questions, and finally forging a solution.
Dr. Sharon Libera, John's mother, is camp coordinator and a
key reason the camp exists. Libera remembers her son being
late for many of the early milestones for a toddler. She
didn't think he was retarded but was puzzled that he did
not speak until he was almost 3. When he did speak, his
first sentences were verses to Bah Bah Black Sheep. Soon
she and her husband were getting their son speech therapy
and buying him an endless array of toy musical instruments,
which he loved to no end.
A doctor, meanwhile, delivered the stark news that their
son had Williams. This was the early '80s, when not much
was known about it. They were given a grim textbook outline
of symptoms. "My husband had immediate back spasms," she
says. "It was really terrible." But then the Liberas went
to a Williams Syndrome clinic and received a brighter
picture, which included helpful therapies.
Libera still had no idea about the Williams link to music.
No one did. But she knew her son had a musical gift, and
arranged piano lessons at a young age. She also noticed
letters from other parents in the Williams Syndrome
newsletter talking about their own children's love of piano
or singing. "Things began to add up for me," she says.
She had a professional video made of John's piano lessons
to show other parents. And she got in touch with Dr. Howard
Lenhoff. Libera had heard about his daughter Gloria and her
opera-singing prowess.
Lenhoff and his wife, Sylvia, had been even more in the
dark about Williams. Gloria was born six years before J.C.P.
Williams ever identified the syndrome. The Lenhoffs knew
their daughter was retarded and set out to enrich her life
any way they could. When Gloria was 11, they noticed that
she had a nice singing voice. "It was very hard to get a
teacher for a retarded girl who didn't want or know how to
read music, so our first teachers were disasters," Lenhoff
says.
They finally found the right teacher, a woman who taught
singing to prisoners. She taught Gloria by ear, starting
with Mozart and Handel, with Lenhoff eventually hiring
foreign instructors to teach her works in other languages.
He also bought her a small accordion.
"So help me God, she just picked it up and started playing
it," he says. "She knew how to chord it and everything."
A 1988 documentary about his daughter, Bravo Gloria, spread
the word. After the documentary aired, Lenhoff was flooded
with calls from scientists and parents telling him his
child had Williams. "Essentially we said, so what?" he
recalls. But he and his wife attended some Williams
meetings and heard similar musical anecdotes. "I said,
"This is kind of spooky,' " he remembers. Yet he wondered
if Gloria was just an anomaly, who excelled because she was
talented and well trained.
Then Lenhoff met more Williams children who were musically
gifted. A 1993 trip to England's Williams convention
convinced him that it was no fluke. "We saw more kids,
English kids, and I said, "Sylvia, it's real.' " Lenhoff
had just started trying to convince people of the musical
connection when he got a call in California. It was Libera,
phoning from Massachusetts.
Libera suggested they meet to discuss their music
observations. During a family visit to his native
Massachusetts, Lenhoff met with her. She proposed a
Williams music camp; he proposed a Williams music college.
Discussion of the latter continues, but the former plan
fell into place rapidly, almost by chance.
Before catching his flight home, Lenhoff had breakfast with
an old pal who happened to sell food to an elite girls
music camp nearby. It was Belvoir Terrace. Within hours,
Lenhoff had pitched the camp idea to Belvoir director Nancy
Goldberg. She liked it.
Her mother, Edna Schwartz, has owned Belvoir Terrace since
1954. She had buildings, chairs, tables and other
accoutrements painted shades of her favorite color, purple.
To this day, she rides around the campus in a purple golf
cart, always dressing in purple outfits. Schwartz recalls
the day in 1993 Lenhoff brought Gloria to meet her and
Goldberg: "We listened to her sing and sat there with our
mouths wide open."
The Williams board still had to be convinced. The
association wasn't certain of the musical connection, and
didn't want to set up other children and parents for
disappointment.
"We were skeptical," says Williams Syndrome Association
chief Terry Monkaba. "We were not willing to say these kids
just have astonishing talent. Many of the board members had
younger children who hadn't been exposed to music and
weren't sure. But we went ahead with it.
"In the years since, it's become so clear how much they're
all touched by the music, and how kids who don't seem that
musical can make so much progress when they're immersed in
it."
The genetic mystery
Well before there was talk of a Williams camp, there was
talk of Williams genes. Specifically, missing genes.
Scientists had been studying the genetic makeup of Williams
people throughout the '80s. The breakthrough came in 1993,
when scientists determined that Williams individuals all
were missing a tiny portion of genetic material in one of
the two copies of chromosome No. 7 that are found in each
cell of the body.
That missing portion includes at least 15 individual genes.
One of them is a gene that produces Elastin, a protein that
is vital for helping elastic fibers develop in major
arteries, the lungs and skin. Individuals who have fewer
Elastin genes may develop heart problems, intestinal
disorders, high blood pressure and joint problems.
The absence of sufficient Elastin does not explain all
aspects of Williams Syndrome, a random chromosomal disorder
affecting 1 in 20,000 births. Scientists hypothesize that
other missing genes correspond to certain traits of the
syndrome. One of the other missing genes, LIM kinase-1, may
hamper spatial awareness. That may be why simple activities
such as drawing shapes, arranging blocks, even walking
without bumping into something can be a major challenge for
a Williams person.
The genetic work could go a long way toward explaining why
Williams individuals usually learn to walk and talk late,
around 2; have poor fine motor skills; and are highly
sensitive to loud noises, such as thunder or fireworks.
Despite delayed speech development, many have a facility
with language and surprisingly good vocabularies. This has
hindered some Williams children in school, because teachers
over-estimated their potential. It also has drawn great
interest from Dr. Ursula Bellugi and her colleagues at the
Salk Institute.
Bellugi's findings show that the area of the brain that
accounts for language ability appears not to be damaged.
Another brain area spared is tied to emotions and memory --
two strong characteristics with Williams individuals. A
compelling implication of her research is that language and
reasoning ability do not necessarily go hand in hand.
But what about the music?
Lenhoff offers an explanation that stems from the findings
of Bellugi and others.
"They show that the brain of Williams people is 20 percent
smaller than our brain," he says. "The part that seems to
be enlarged in professional musicians who have perfect
pitch is called the left planum temporale. With some
Williams kids, the left planum temporale is either the same
size as normal humans, which means it may occupy more of
the brain relatively speaking, or even bigger. The missing
gene may lead to promoting and stimulating other genes that
are involved in this. But we really don't know. In fact, we
know little enough of the normal brain, let alone the
Williams brain."
Lenhoff is testing Williams individuals for perfect and
relative pitch -- where a person can determine any note if
given another note. One problem in testing is that very few
Williams people read music, and most don't know the names
of musical notes. That doesn't hamper them, says Lenhoff,
but it makes it hard to determine if they have relative or
perfect pitch.
"So far, I've found five kids who know the names of the
notes -- and all five have perfect pitch," he says. "That's
at least five of the 57 campers here. In a population of
normal people, there's usually only one in 10,000."
The Williams people
"I found out I had Williams Syndrome when I was 3, when my
mom went to the doctor and he told her to watch a tape
about it," says Catherine Alcuri, an outgoing 16-year-old
from Utica, N.Y.
"I didn't like that I had it. I had to go to the hospital a
lot when I was little. It made me cry that I had it. Some
kids would tease me in school and make fun of me, but my
mom would say, "Don't worry, you're the better person.'
Then when I came here to camp, I cried too. But they were
good tears, because I had never been around other people
with Williams. I was just so happy."
Many Williams people spent their early years undergoing
multiple heart surgeries. Many have endured teasing from
classmates, stares and feelings of loneliness or not
fitting in. They know enough to know that they are indeed
different.
"People don't understand it mostly," says Melynda Grace
Pawulak, 30, of Maryland. "Sometimes I'll walk up to them
and say, "Do you want to know what's wrong with me and why
I walk this way and why I talk this way and look like
this?' Some people look at you weird, and it hurts me
sometimes and makes me upset, but you can't control what
people think and do."
For many, the camp is the only time they are around other
Williams individuals. That dynamic adds to the cathartic
one-week experience. There are new social relationships and
a renewed sense of self, support and confidence.
 |
Meghan and best
friend Sarah Catalanotto.
(Photo courtesy of Frank Catalanotto.) |
Sarah Catalanotto, 18, of New York has attended all five
Williams camps, and was too shy to sing her first year. Now
she loves the spotlight and has one of the camp's best solo
voices. Ditto for Lisa Walsh, who came to camp as a
keyboard player three years ago, and now is such a talented
singer that she performs in church and adult choirs back
home in Montreal. Alec Sweasy, a 13-year-old from
Minnesota, was only 8 at his first camp and a piano novice.
Today he is regarded as the next big musical standout in
the Williams world. You could see why as he played a
10-minute version of Mozart's Concerto in C Major at the
student recital -- entirely by ear.
Then there is Meghan Finn, who has the presence of a pop
star on stage, with all the hand gestures and facial
expressions to go with her smooth, evocative voice.
Meghan's story is intricately bound to the story of her
mother, Liz Costello, and shows the immense strain that can
accompany a search for answers.
Like many other Williams campers, Meghan developed slowly
and suffered from a heart condition. Costello and her
husband took Meghan to hospitals all over the country.
Neither parent had heard of Williams Syndrome when their
daughter was diagnosed at 18 months.
The early diagnosis was a blessing. They started Meghan on
an infant stimulation program, sensory integration therapy,
occupational therapy, physical therapy, speech therapy.
"That's how I spent most of Meghan's childhood, driving
from therapy to therapy, and hoping," Costello says.
At age 3, Meghan started plonking on a keyboard, drawn
almost mystically to the sounds it made. She would play
endlessly, repeating songs she heard on the radio.
Meghan, whose Williams symptoms were fairly mild,
progressed well in school, though she only learned to read
when her mother bought her a record phonics program that
taught through music. At 8, she started Suzuki piano
lessons. Costello had heard of the Williams Syndrome
Association but says, "I didn't want anything to do with
it. You go into denial. I was just trying to keep my head
above water, and I didn't want to hear anything else I
should be doing."
The stress took a personal toll, as Costello's marriage
broke up. She finally turned to a woman in the association
for advice. "I don't remember this woman's name, but to me
she was an angel. She was the person on the other end of
the phone who, when I thought I wasn't going to make it,
was there for me. So I feel that's my job now. To be an
angel for others."
Costello is that. She gives seminars on coping with a
special-needs child, and another titled "Don't Forget the
Marriage."
"It can be overwhelming and take you over. It can take over
your life and your marriage and your other children and
your identity," says Costello, who has remarried and
recently received a master's in social work.
As for Meghan, she's excelling beyond her mother's dreams.
Though she never sang before her first camp five years ago,
she is the acknowledged pop-singing Williams star.
"I love to show how I feel when I sing," she says. "It
connects with my whole body, my soul, my spirit and my
heart."
The music train
In late June, researchers at the University of Connecticut
held a ground-breaking Williams Syndrome program called
"Music and Minds." Sixteen Williams individuals spent 10
days singing, playing and learning about mathematics and
fractions through music.
The program is run by Sally Reis, a professor of
educational psychology -- and cousin of Williams pianist
Christian Lawson.
"They have so many gifts," she says. "Empathy. Compassion.
Concern. Deep feelings of love, deep understanding of when
people are sad or upset, and, of course, social ability."
Her most powerful memory from the program is a hand-written
poem by one of the Williams participants, Blake Middaugh,
29, of Venice. The poem was shown on an overhead projector
at the music camp during a gathering of parents. It read:
Music is about what life
should be and it's what sets you free because what
comforts the soul is a little bit of rock 'n' roll!
Music travels like a train on its track and when
the journey begins, there is no turning back
because music is also about
friendships-peace-laughter-love and family! God
gives us each special gifts to use and when you
make a big difference in someone else's life you
know you can't lose!
The poem could have spoken for all the Williams campers.
You could see it in the way they swayed and sang along when
Arlo Guthrie's former guitarist, David Grover, staged a
rocking concert. You could see it at the annual disco
dance, with campers, parents and counselors twirling and
boogie-ing up a storm, shaking the place enough to make the
deejay's CDs keep skipping.
You could see it in the private music lessons: One shy
camper, Evi Papazoglou, a 21-year-old from Massachusetts,
brightened noticeably when her Berklee-schooled teacher
improvised with her on a song by her idol, Paul McCartney.
And drummer Steve Sesny, a 24-year-old from Maryland, was
ecstatic as he traded complex riffs with Arlo Guthrie's ace
drummer, Terry A La Berry.
"I've played a lot of dual drummer things, but I've never
had chemistry with anybody like it works with him," says
the Lenox-based musician. "He gets this big beaming smile
and we connect. We don't have to talk about what we're
doing. I've never seen anything like it in my life."
You certainly could see it on the final night: At the
talent show, music counselors on bass and guitar backed up
student bands in songs from Wipe Out to Margaritaville; and
at the Broadway finale, campers delivered show tunes from
Get Me To The Church On Time to Edelweiss with the gusto of
giddy stage veterans. A hearty curtain call ended the show
amid huge cheers, followed by hugs and tears, awards and
emotional speeches. The Williams people knew the week was
all but over, that they would soon be returning home to the
real world.
In the darkness, campers walked slowly down the hillside,
many clasping a parent's arm or a railing for balance. They
laughed and talked in the glow of the New England
starlight, and somehow you knew, the music was still moving
inside them, like a train on an endless track.
The author's younger
brother, Robert Scheiber, 41, has Williams Syndrome and was
a speaker at the last national convention of the
association. Robert, of Rockville, Md., has worked for the
U.S. Government Printing Office for the past 18 years. He
is an avid pianist and drummer.
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