Musical interaction

Paul West in music class with student Aidan McNamara and teaching assistant Jackie Haller.

Paul West has filled several roles at Matheny and done them all well. As a teaching assistant in the Matheny School, he was named Paraprofessional of the Year. He has also worked as a recreation therapy assistant and a one-on-one aide. Now, he’ll be doing what he loves most. He has been named the school’s new music teacher.

West has a Master of Fine Arts degree from the California Institute of Arts in Los Angeles and an undergraduate degree in music theory/composition from Montclair State University in Montclair, NJ. He was also part of a quartet that was nominated for a Grammy Award earlier this year in the “Best Classical Compendium” category for a recording of the music of esoteric composer Harry Partch.

As music teacher at Matheny, West is looking forward to enhancing the music experiences of the students. “Teaching at Matheny,” he says, “is no different than composing music. One needs to break down specific subject matters, analyze their most basic elements and reassemble the information in a relatable way.”

Dancer/choreographer Dion Alston, performing “Every Teardrop is a Waterfall” with dance facilitator Elizabeth Zelesny.

For the 18th consecutive year, Matheny’s Arts Access Program has received a grant from the New Jersey State Council on the Arts. The grant, in the amount of $34,267, is for the first year of a three-year grant cycle beginning in fiscal year 2014.

Along with the grant, Arts Access received a Citation of Excellence, honoring “New Jersey arts organizations, programs and projects that receive the highest possible assessment of their Council grant applications by esteemed, independent panels of their peers.” The program once again was also named a Designation of Major Impact.

According to the NJSCA, “Arts organizations are designated by the Council as Majors in recognition of their long history of artistic excellence, substantial programming, broad public benefit and a superior review through the panel process.”

Arts Access empowers individuals with disabilities to create art without boundaries. Through the use of innovative systems and techniques, participants can take part in the visual, performing and literary arts. Regardless of their disability, the artists are provided with the tools and materials needed to produce complete pieces of work.

Earlier this year, Arts Access received a $10,000 Challenge America Fast-Track grant from the National Endowment for the Arts (NEA) to support the Full Circle 2013: Reflections, the program’s annual event, which will celebrate Arts Access’ 20th anniversary on November 2. Congressman Leonard Lance (NJ-07) will be honorary chair of Full Circle.

Arts Access artist Ellen Kane in front of her painting, “Half Circle.”

Dr. Gary E. Eddey

By Gary E. Eddey, MD, Vice President for Medical Affairs and Chief Medical Officer

Matheny has been providing residential programs for individuals with Lesch-Nyhan Disease for more than four decades, and currently five young men and one young woman are under Matheny’s care.

Lesch-Nyhan is a rare X-linked, recessive genetic disorder associated with cognitive impairment, hyperuricemia, renal involvement and the hallmark symptom – severe self-injurious behaviors. LND is usually diagnosed in the first few months of life as a developmental delay and may be diagnosed initially as cerebral palsy. The behavioral aspects of Lesch-Nyhan, such a self-mutilation and aggressive behavior, are involuntary and not under the patient’s control. These behaviors usually begin between the ages of three and six months and often escalate as the patient ages and becomes more physically able to cause self-injury.

Treatment for LND patients should include:

• Judicious use of protective devices.

• Utilization of a behavioral technique commonly referred to as selective ignoring, with redirection of activities.

• Occasional use of medications.

The behavioral strategy that Matheny has long employed is one of selective ignoring and distraction. We have an interdisciplinary team of people who have multiple years of hands-on experience working with people with LND, and we constantly re-educate all staff in order to maintain the most consistent continuity of care around that model.

This is the first in a series of four articles on Lesch-Nyhan Disease.

Matheny vice president of operations Chris King, left, and pharmacy technician Denise Bettinger receive New Jersey Smart Workplace and Drive Less Somerset Employer Challenge awards from Michael Camerino, chair of the Ridewise board of directors, second from right, and Shadow Traffic/Metro Networks traffic reporter Bernie Wagenblast.

Matheny received three awards at the annual employer recognition breakfast held July 25 by Ridewise, the source for travel alternatives in Somerset County, NJ. The three awards:

• New Jersey Smart Workplaces Platinum Award (one of 19 employers honored).

• Second place in the Drive Less Somerset competition, which encourages individuals to limit driving in favor of active transportation.

• Second place in the “Drive Less Somerset Challenge,” won by pharmacy technician Denise Bettinger in competition with all registered employees throughout Somerset County.

More than 55 businesses and four municipalities were honored as New Jersey Smart Workplaces at the event, held at Maggiano’s Little Italy in Bridgewater, NJ. “The event,” said Donna Allison, Ridewise executive director, “is an opportunity for the agency to honor organizations, local municipalities and schools that demonstrate leadership and are forward thinking in the area of sustainable transportation.”

Linda Horton, left, with a satisfied shopper at First Chance at Second Chance in 2012.

On Wednesday, August 14, bargain shoppers will get a preview of the merchandise to be featured next fall at the Second Chance Shop, the thrift shop operated in Gladstone, NJ, by The Friends of Matheny, the auxiliary group that raises funds to benefit Matheny’s students and patients. That’s the date for “First Chance at Second Chance,” a one-day reopening of the shop from 8:30 a.m. to 5:30 p.m.

According to Linda Horton, the Matheny trustee and Peapack, NJ, resident who manages the shop, “This is everyone’s opportunity to purchase all of our new merchandise before we re-open on September 3. The shop is super loaded with exciting items.”

The shop is located adjacent to the United Methodist Church on Jackson Avenue. The Friends of Matheny has raised more than $3 million since the group was started in 1983.

Pearl Chiang, RN, in front of her artwork.

Pearl Chiang works as a nurse at Matheny during the day, but at night, when she wants to relax, she paints. “Once I am focused,” she says, “all of my worries disappear. I paint little, cute mermaids without a single speck of sadness, and I realize that I can be as happy and worry-free as they are.”

During the month of August, Chiang’s art will be on display at the Bridgewater Township Library at 1 Vogt Drive in Bridgewater, NJ. Title of the exhibit is “Happy Life” because, according to Chiang, they represent “the pure untainted happiness of childhood.”

Marilyn Lukach, left, and library assistant Darlene Darling admire “Butterfly” by Tammy Heppner.

Marilyn Lukach, a resident of Wharton, NJ, is past president of the Wharton Public Library. She and her husband, Robert, have attended Full Circle, the annual celebration of Matheny’s Arts Access Program, several times, and she wanted to share some of the visual art with her fellow residents.

As a result, “Unexpected Art,” the creative works of 11 Arts Access artists, can be viewed at the Wharton Public Library in July and August during library hours. The mission of the Arts Access Program is to provide individuals with disabilities the freedom to create in the visual, literary and performing arts.

From left, Larry Thornton of Gladstone, NJ, Matheny volunteer and past Grand Knight; Matheny president Steve Proctor; Bob Warren of Martinsville, immediate past Grand Knight; and John Arcoleo of Martinsville, newly elected Grand Knight.

Members of  Knights of Columbus Council 5959 at Blessed Sacrament Church in Martinsville, NJ, recently visited Matheny to deliver a donation of $720 and to invite Matheny president Steve Proctor to attend a future Knights meeting to talk about Matheny’s programs and services. The plan is to open the meeting to the community at large.

Thanks to the Knights for their wonderful support of Matheny and for their efforts to spread the message about what we do to a wider audience!

Student Daeon Troutman with music therapy intern Sabrina Deutsch.

Music therapists at Matheny use various types of music to positively impact students and patients’ cognitive, physical, emotional and social skills, helping them realize their potential in society. Activities and techniques include improvisation, rhythm, songwriting, song, chants, instrumental activities, live and recorded music.

On a recent Saturday morning, local DJ Craig Sinclair was scheduled to perform in the children’s dining room, but the weather was so perfect that everyone went outside. It was music therapy at its best.

Adult patient John Nguyen and recreation therapist Meghan Walsh.

Larry Thornton, helping out on a science project with, from left, student Tasha Santiago-O’Keefe; teaching assistant Kim White; and teacher Peggy Zappulla.

Larry Thornton started out volunteering one day a week in a classroom at The Matheny School. That one day has turned into three. The retired paper manufacturing executive lives in nearby Gladstone, and says, “Obviously, I enjoy this immensely. Coming here has been a real eye-opener for me to see this marvelous institution and what the staff members do to make the lives of these children as normal as possible.”

In addition to his classroom duties, Thornton had volunteered at Miles for Matheny, is a former member of the Board of Trustees at the now defunct McAuley School in North Plainfield, NJ and is a past Grand Knight at the Knights of Columbus Council of Blessed Sacrament Church in Martinsville. The KOC Council recently donated $720 to Matheny. Earlier this spring, Thornton helped out at Matheny’s “March Madness” event to raise money for the American Heart Association. During the event, our front parking lot was closed off and transformed into several adapted basketball courts.

Since the majority of Matheny students and patients are full-time residents, volunteers such as Larry Thornton are needed days, evenings and weekends. Individuals can serve as classroom aides, recreation assistants, tutors or just friendly visitors. For more information, call (908) 234-0011, ext. 282; or email volunteers@matheny.org.

Thornton at Hoops for Hearts with student Yasin Reddick.

Raven Bennett at the Scholarship Gala, with social worker Valerie Marcketta, center, and speech-language pathologist Brynna Cunningham.

Two Arts Access artists—student Raven Bennett and adult patient Bozena Geraghty—were among the 15 recipients of scholarships presented this past spring by the Dance Innovations Performance Foundation (DIPF ) at its annual Kids for Kids Scholarship Gala held at the Primavera Regency in Stirling, NJ. The Chatham, NJ-based DIPF was established in 1999 to give back to the community and to those less fortunate.

The scholarships were awarded to 14 special needs artists and to one organization serving children from domestic violence homes. DIPF raised funds through benefit performances, fundraising and private donations. Its student dancers also often perform at Matheny for students and patients.

Both Bennett and Geraghty are active in Matheny’s Arts Access Program, which enables people with disabilities to create fine art, assisted by professional artist-facilitators.

Jaclynne Dietrich helps Dylan communicate using a voice output switch.

Six-year-old Dylan Vongrej was born with Canavan disease, a disorder that causes progressive damage to nerve cells in the brain. Dylan is non-verbal and unable to walk, but, according to his mother Noreen, “He understands everything you’re saying.” He’s also learning to communicate, thanks to speech therapy he’s receiving from Matheny as part of its Solutions For Schools program.

Dylan is unable to physically attend school, but the Bridgewater-Raritan Regional School District has contracted with Matheny to have speech-language pathologist Jaclynne Dietrich visit Dylan twice a week. Dietrich is currently using two voice output switches to help Dylan communicate. “He’s pretty much mastered those,” Dietrich says. “We have programmed ‘hello’ and ‘goodbye,’ and we make choices between music and books. And we have weather and numbers.  His vision is questionable, so we rely on his auditory abilities. We want to extend it beyond the two switches, so he can tell us what he wants to do and how he’s feeling. The iPad allows for that. There is auditory scanning and switches that connect to the iPad that will make things more accessible for him.”

“It’s amazing what Jackie has done with him,” says his mother. “He has really progressed with all of his therapists, but I’m partial to Matheny because you understand children like this more than anyone.” In addition to speech therapy through the Solutions program, the Vongrejs bring Dylan to Matheny’s outpatient clinic, the Matheny Center of Medicine and Dentistry, for both his seating-and-mobility and medical needs. “It’s great,” says his mother, “that everything is in one place.”

Help available through Matheny Solutions For Schools includes: specialized evaluations, therapy services, home-based services and adaptive equipment and assisitive technology. For more information, call Linda Newsome, Director of Community Services, at (908) 229-7342 or email her at mathenysolutions@matheny.org.

Dylan with, from left, his father Cliff, mother Noreen and speech-language pathologist Jaclynne Dietrich.