"It has just been an amazing journey and it's been amazing to watch. Especially to parents of younger children: get ready to be amazed at the kind of life that's going to unfold." - Mike Hagler
'Amazed' is an apt descriptor of how Douglas and I have felt as we've researched Williams and gotten to know Garrison better.
As a freshman, I rode on the morning bus with Garrison - he was lively, talkative, social, charming, and memorable. He used to bring a harmonica with him and perform miniature concerts for the rest of the students, establishing a joyful, engaged environment on the bus. Each time the bus pulled away from his driveway, he would face the window and say, "bye mom!" even if she couldn't have heard him. Needless to say, some genetic disorders can be 'amazing.' It would be a disrespect to Williams Syndrome to merely summarize its biological causes and methods of diagnosis; you simply must tell the stories. The truth-revealing impacts people with Williams make are too precious to not share. Watching a person grow, mature, and learn from the challenges presented to them at birth helps us better understand the nature of life on earth. "It's
a fascinating thing to watch the accomplishments of a child with
'special needs' versus perhaps a child who we would term 'normal'," said Mr. Hagler. What should we do, then, when a person with 'special needs' enters our life? We should allow our understanding of the world to be expanded by our experiences with them. We should get informed about the things we can do and walk beside them. Just like with anyone, we should be sensitive, listen to their stories, and try to better understand the way they experience the world.
On parenting, Mr. Hagler advised, "don't be afraid to try new things...you don't have to just listen to the experts...seek out as many different resources as you can."
There's clearly a lot of love in the Hagler family. Watch the video below to hear Garrison and his dad duet on 'Shenandoah,' 'You Are My Sunshine,' and 'When the Saints Go Marching In':
This post lists a variety of links pertaining to Williams Syndrome, including support organizations, an article about the growth in Williams Syndrome research, stories about two other individuals who have Williams, as well as organizations that have helped Garrison. Several organizations help and inform others about Williams Syndrome, including:
Garrison has been very blessed to have so many musical outlets. He has been able to play his harmonica at the Buckeye State Harmonica Club, at senior homes, and even at public events! This article helps explain why Garrison and others like him are so musically talented: http://www.sciencedaily.com/releases/2006/10/061003191006.htm
Williams Syndrome carries with it a love and drive for music, which is remarkably evident in members of the Williams population. From an early age, they have a knack for spreading musical joy throughout their surrounding communities.
Members of the Williams Syndrome population almost always exhibit exceptional musical capabilities, including perfect pitch, self-taught instrument skills, and a keen sense of stagemanship. In our instructive interview with Garrison Hagler, a local high school student with Williams, all these characteristics were clearly represented.
His dad, Mike Hagler, spoke of Garrison's early interest in the pitches of domestic appliances, including vacuums, lawn mowers, hedge-trimmers, and kitchen devices. At a young age, Garrison would match these devices' pitches on a keyboard. Garrison would anticipate the coming of spring, looking forward to the whirr of motors from trimmers. In fact, we're told he recently received a trimmer as a Christmas present.
Another Christmas, Mrs. Hagler bought a harmonica for her husband Mike; needless to say, Mike was speechless when one afternoon he returned home to his toddler, who had miraculously learned to play the harmonica with exceptional ease. Since that time, the Hagler parents have devotedly endeavored to quench Garrison's unique thirst for musical variety. And people with Williams tend to be omnivorous in their musical tastes, listening to anything from Gregorian Chants to Free Jazz. Garrison is no exception; we're told that his bedroom overflows with over 200 CDs from a vast selection of genres, including Barber Shop, Bagpipe, Jazz, and Bluegrass.
In discussing Garrison's rich tastes, Mr. Hagler remarked, "that's been one of the fun things about having a kid like Garrison...his tastes are so eclectic. I would never have thought in a million years I would have been a Bluegrass fan." He turns to his son: "that's been one of your effects on me."
Sometimes, the musical thirst possessed by a person with Williams results in them acquiring a wide array of performance experiences. This is precisely the case with Garrison, who, through his involvement in the local Buckeye State Harmonica Club, has formed a circle of relationships with very accomplished and, in most cases, older musicians. Garrison can be seen in a picture near the bottom of their webpage.
"The group plays about once a month," said Mr. Hagler, "and they primarily play senior citizens communities, retirement homes, things like that."
However, Mr. Hagler explains that Garrison's experiences go beyond his involvement in the club: "he has played with some very famous harmonica players in the harmonica community: Sgro Brothers, Bud Boblink, Charlie McCoy...we've gone to festivals and conventions and he has played solo. He played at the national convention in Saint Louis last year in front of 1,500 people."
Garrison's musical abilities have clearly touched the people around him. Watch the video below to hear more stories about Garrison's musical life directly from his dad and him:
In our previous post, we touched on the profound social capabilities of the Williams population:
Williams people tend to talk a lot, and with pretty much anyone. They
appear to truly lack social fear; indeed, brain scans have
shown that the amygdala (the area in the brain that processes fear)
shows no reaction when a person with Williams views angry or worried faces. Seemingly, they perceive all faces as friendly.
This is what we will be talking about in today's post. In a New York Times article from 2007 entitled "The Gregarious Brain," David Dobbs articulates a particularly touching story:
The mother of
twin Williams boys in their late teens opened her door to find on her stoop a
leather-clad biker, motorcycle parked at the curb, asking for her sons. The
boys had made the biker’s acquaintance via C.B. radio and invited him to come
by, but they forgot to tell Mom. The biker visited for a spell. Fascinated with
how the twins talked about their condition, the biker asked them to speak at
his motorcycle club’s next meeting. They did. They told the group of the
genetic accident underlying Williams, the heart and vascular problems that
eventually kill many who have it, their intense enjoyment of talk, music and
story, their frustration in trying to make friends, the slights and cruelties
they suffered growing up, their difficulty understanding the world. When they
finished, most of the bikers were in tears.
These sort of touching experiences are common among people with Williams Syndrome. Everyone should become aware of Williams Syndrome and the amazing stories that are made possible, in part, by it.
When a person with Williams Syndrome talks, it is as if they are opening their heart; their innocence shines through in whatever they say.
During our interview with a local high school student named Garrison Hagler, he made multiple speeches professing his thanks to us. In fact, at a recent orchestra concert, he made a speech, complimenting and encouraging the orchestra students about the work they put into the performance. Every speech was very heartfelt, with a lot of emotion behind it. Take a look:
After being ignored for nearly three decades, Williams Syndrome has recently
become one of the most vigorously researched
disabilities after autism.
Autism is a highly diverse 'spectrum disorder' with poorly designated diagnoses, no identified cause, and no clearly defined
genetic basis. Williams, in contrast, arises from an isolated genetic cause
and produces a predictable set of traits and behaviors. It is perfect for
studying not only how genes dictate intelligence and sociability, but also
how our capacities for thought combine with our desire for relationships to create
complex social behavior.
Williams Syndrome
Williams Syndrome was discovered in 1961 by J. C. P. Williams of New Zealand. During his job at a hospital, he noticed a pattern in some of his patients: many had elfin facial features, were small in
stature, were overly friendly, and mentally slow. As it turns out, these common characteristics were a result of a genetic mutation; for a number of Williams' patients, 25 of their genes in chromosome 7 had been deleted during meiosis (cell division during sexual reproduction). Williams modestly labelled this syndrome with his own name, and it has been thoroughly researched since its discovery, with a recent surge in interest.
About 1 in 7,500 people have Williams Syndrome, compared with about 1 in 150 for autism and 1 in 800 for Down syndrome. It can occur with no family history. An estimated 20,000 to
30,000 people have it in the United States, and it occurs
equally in both males and females. If a person with Williams Syndrome has a child, that child has a 50% chance of inheriting the disorder.
The specific genetic mutation that causes Williams occurs when DNA is torn during meiosis. Normally, the two
strands that make up DNA's double helix part cleanly, like a zipper. But in Williams, about
25 'teeth' in one of the strands are torn loose during this parting.
Symptoms
The damaged DNA results in cognitive deficits, mainly in abstract thought. Many members of the Williams population have a very
vague sense of space; adults
fail at six-piece jigsaw puzzles, get easily lost, and draw like
preschoolers. These mental deficits generally subtract about 35
points from whatever I.Q. a person might have inherited.
Additionally, people with Williams exhibit cardiovascular problems, high calcium levels, infantile feeding problems, dental abnormalities, sensitive hearing, developmental delay, and learning disabilities. Williams people tend to talk a lot, and with pretty much anyone. They
appear to truly lack social fear; indeed, brain scans have
shown that the amygdala (the area in the brain that processes fear)
shows no reaction when a person with Williams views angry or worried faces. Seemingly, they perceive all faces as friendly. People with Williams tend to be oblivious to the subtleties of social interaction. They miss secondary meanings, ideas, and intentions that most of us infer based on
facial expressions, body language, and stock phrasings. A person with Williams syndrome will probably misunderstand your intentions if you look at your watch and
say: “Gee, look at the time! Well it’s been lovely talking with
you.” They may smile energetically, agree
that “this is nice” and inquire if you’ve ever visited Disney World.
Because of this, people with Williams may experience difficulty deepening relationships. They know no strangers; yet, they can claim few
friends.
Diagnosis
An initial clinical diagnosis can be confirmed by a blood test. This technique is known as fluorescence in situ hybridization (FISH), a diagnostic test of the DNA. It detects the elastin deletion on chromosome 7 in more than 98% of individuals with Williams syndrome. A new diagnostic test for Williams syndrome is called micro-array analysis. This test not only identifies the elastin deletion but can provide additional information on the precise size of the deleted area on chromosome 7.
Treatment
Although some people with Williams can hold simple jobs, they require assistance managing their lives. Few can balance a checkbook because of their limited mathematical capabilities. Many would benefit from the aid of developmental psychologists, speech
pathologists, and therapists who are
familiar with Williams syndrome. Williams syndrome teams, with professionals available in all of these
areas, should be combined with whatever local resources are available.
