Uncovering drama

Mike Christie waits for instructions from Natalia Manning, who uses an augmentative communications device.

During the summer between his junior and senior year at Gill St. Bernard’s School in Gladstone, NJ, Mike Christie spotted an online ad about volunteering in the drama segment of Matheny’s Arts Access Program. “I was doing acting in high school,” he recalls, “and I thought this would be a new opportunity.” Looking back on the experience, he says, “It gave me a greater understanding and appreciation of how art can affect people.” Arts Access gives people with disabilities the freedom to create in the visual, leterary and performing arts.

Christie, who lives in Tewksbury, NJ, appeared in a GSB production of The Secret Garden that won the Paper Mill Playhouse’s “Rising Star” award for best New Jersey high school musical production in 2008. He went on to earn his BFA in dramaturgy and MA in arts management at Carnegie Mellon University in Pittsburgh. He was looking for employment opportunities at theatrical organizations and other nonprofits when he received a phone call from Eileen Murray, director of Arts Access, and Burt Brooks, performing arts coordinator. After volunteering in Arts Access, Christie was hooked. So, when Murray and Brooks asked if he would be interested in facilitating drama, it was a natural fit.

“Mike was a dedicated volunteer,” says Brooks, “and now he’s a dedicated employee. He has developed strong one-on-one relationships with our clients, and they are all glad to see him and happy to work with him.”

Many of the adults for whom Christie facilitates are nonverbal. Some use augmentative communications devices, but many only have a ‘yes’ or ‘no’ method of answering questions. In working with them to create either a play or a story that can be turned into a play, Christie has to offer as many options as possible. “I ask a lot of questions,” he says, “to eliminate possibilities in order to get exactly what they want. As they’re telling me what they want, I’m typing it into script format.”

On November 2, Arts Access will celebrate its 20th anniversary at Full Circle 2013: Reflections, an event that will include a visual arts exhibit and a multi-media fine arts showcase featuring dance, drama, poetry and prose. Two plays, “Princess Amanda 2” by Luis Rodriguez and “Brother Play” by Missy Cutler, were facilitated by Christie who says he just wants to “make sure people here have the right to express themselves. Art shouldn’t exist just for able-bodied artists.”

For more information about Full Circle, or to order tickets, call (908) 234-0011, ext. 260, or email pcats@matheny.org.

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Taking the plunge

Centenary student Anthony Pare sharing a humorous moment with Matheny student Mark O’Connell.

Every semester incoming students at Centenary College in Hackettstown, NJ, take part in a day-long community service project called the Community Plunge. The project is mandatory for all new students and offers them a selection of different sites at which they can volunteer. This year’s Community Plunge was held on Monday, August 26, and Matheny was one of 18 different organizations that were included.

The students spent the entire day participating in several recreation therapy activities including relay races and adapted sports. Recreation therapy at Matheny provides our students and patients with a variety of recreation opportunities and resources to improve their physical, emotional, cognitive and social well being.

Volunteers are needed to help out in recreation therapy activities evenings and weekends. Volunteers can serve as recreation assistants, classroom aides, tutors or just friendly visitors. For more information, call Gail Cunningham, at (908) 234-0011, ext. 282; or email her at volunteers@matheny.org.

Centenary student Nicolena Marrero getting ready for a catch in the egg in toss competition.

 

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Fall open house

Speech-language pathologist Jaclynne Dietrich works with student Scott Gordon on his communication skills.

The Matheny School will be holding an Open House on Wednesday, October 9, from 10 a.m.-12 noon to showcase its various programs for students with multiple disabilities. These include:

  • Preschool. Supported through an adapted environment using emergent technology, communication systems and the individual education plan.
  • Elementary K-8. Utilizing a “centers approach” where students have the opportunity to participate with their peers to learn tasks via hands-on activities.
  • High School 9-12+. Study of traditional academics, such as biology and U.S. history plus transition and elective classes that help students prepare for adulthood.
  • Adapted Physical Education. Promoting fitness through all traditional sports, modified to encourage students to create their own independent movements.
  • 21st Century Life Skills. Taking what is learned in the classroom and applying it to real-life situations.
  • Speech therapy. Providing individual and integrated services as well as in-class language groups.
  • Occupational Therapy. Facilitating students’ access to their environment with as much independence as possible.
  • Social Services. Promoting the emotional well-being and adjustment of each student to maximize academic growth and physical functioning.
  • Physical Therapy. Customizing positioning and exercise routines using standing and adaptive bike riding.
  • Psychology. Working as a team with school staff and parents/guardians to understand the meaning behind behaviors viewed as inappropriate or unsafe.

For more information or to R.S.V.P., call Jill Baker at (908) 234-0011, ext. 234, or email mathenyschool@matheny.org.

Occupational therapist Wendell Lumapas helps student Michael Taurozzi use switches to access a computer.

 

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Exceptional educator

Margaret “Peggy” Zappulla.

“I teach my students that, if there is something in life that you want to do, nothing should stop you.” It’s that kind of dedication and perseverance that makes Margaret “Peggy” Zappulla an outstanding teacher and the reason she has been selected as one of Exceptional Parent Magazine’s “Exceptional Educators for 2013.” Zappulla will be featured in EP’s September 2013/Annual Education issue along with the other 2013 exceptional educators from around the country.

Zappulla was nominated for this award by Sean Murphy, The Matheny School principal, who said, “Margaret Zappulla is not your typical teacher. Margaret is always aspiring to reach new heights, and some of her biggest contributions have been on our technology committee where she successfully rolled out initiatives to have assistive switches distributed to every student in the school.”

Adds Zappulla: “The students I work with work hard, and they never give up. I will not let them. I have a responsibility to provide them with the encouragement, tools and support to help them reach their goals.”

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Coming ‘full circle’

Scott Beil facilitating for James Lane, an artist who has been with the program from the beginning.

While studying arts education at The College of New Jersey, Scott Beil, who grew up in Chester, NJ, volunteered in Matheny’s Arts Access Program during the summer. He was so taken by the Arts Access concept that he trained to become a facilitator, eventually becoming studio manager. Arts Access enables people with disabilities to create fine art, assisted by professional artist-facilitators.

Beil left Matheny in 2007 to join the Willow School in Gladstone, NJ, where he is art teacher, co-director of the middle school and an advisor. However, when Arts Access celebrates its 20th anniversary at Full Circle 2013: Reflections on Saturday, November 2, Beil will be returning as curator of the visual arts exhibit.

A working artist whose paintings and drawings have been shown at galleries in New Jersey and New York City, Beil received the Somerset Cultural and Heritage Commission’s “Excellence in the Arts” award in 2007. He was recently accepted into the “Connecting Collections Program,” a prestigious summer institute for teachers from around the world, hosted by New York City’s top museums including the Museum of Modern Art, the Guggenheim and the Whitney.

As he prepares for Full Circle, Beil says he is “deeply honored for the opportunity to put this show together, and it is my deepest intention to respectfully highlight the strong caliber of work that our artists have quietly been creating upon this little hill in Peapack over the past 20 years.”

Full Circle 2013: Reflections will be held from 3-6 p.m. on Saturday, November 2, in the Robert Schonhorn Arts Center at Matheny. For more information or to order tickets ($30), call (908) 234-0011, ext. 260, or email pcats@matheny.org.

 

 

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A parent’s praise

Mike and Bo Geraghty, second from right, with other members of “Team Bo” at the 2013 Miles for Matheny, an annual fundraiser and community event.

Mike and Liz Geraghty of Cranford, NJ, are the parents of Bozena Geraghty, a resident at Matheny. Bo was born with Cornelia de Lange syndrome, a genetic disorder that causes a range of physical, cognitive and medical challenges. Bo is 22 years old and has been at Matheny for four years. According to her father, “she has thrived, as the staff at Matheny has provided a level of care and opportunity we never could have imagined. Most look at Bo and see what she can’t do. Matheny turned that view on its head and looks at her for what she can do.”

A recent decision by a Superior Court judge in Somerset County, NJ, has upheld a 2011 decision by the Peapack-Gladstone, NJ, Land Use Board to reject a proposed expansion and renovation by Matheny. That rejection was based primarily on complaints by neighbors that increased traffic caused by the expansion would make Highland Avenue, the road leading up to Matheny, more unsafe and would imperil the lives of those using it.

While those decisions were disappointing to the Geraghtys, Mike Geraghty prefers to “shine a light on those who make Matheny the success it is, rather than focusing on those responsible for blocking the expansion.” He does acknowledge, though, that his daughter may have been accountable for some of the traffic on Highland Avenue because, “the Matheny staff has taken her camping, ice skating, bowling, horseback riding, fishing and to the beach. And this past year, she finished an assisted 25-meter walk at the Somerset County Special Olympics.”

He also has a message for the neighbors who opposed Matheny’s expansion and renovation. “You can attend church every day for the rest of your life,” he says, “but if you really want to see God’s work being done, then take a ride to the top of Highland Avenue.”

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Let’s get physical

Physical therapist Lisa Tumminelli helps a student use a power wheelchair during a visit to the Great Meadows, NJ, Regional School District.

The Matheny School’s adapted physical education program promotes fitness for all by modifying traditional  sports to encourage students to create their own independent movements. In addition, health and wellness activities are provided to enhance decision-making skills and promote team building.

Students are able to demonstrate their skills with peers in the community via visits to physical education classes at public and independent schools. The goal of these visits is to promote interaction between both groups of students and to enable them to compete as peers.

The principal of one school that Matheny visited said her students “spoke about their experience for most of the day. I enjoyed watching the transformation from apprehension to total inclusion.”

Schools interested in participating in this program should contact Jim Hintenach at (908) 234-0011, x239, or jhintenach@matheny.org.

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Wharton welcome

Wharton library director Kassundra Miller with artists Josh Handler, left, and Alex Martinez.

Digital art and paintings by 11 Arts Access artists have been on display during July and August at the Wharton Library in  Wharton, NJ.  On Friday, August 16, the artists were recognized with a special reception at which some of their writing talent was also celebrated.

Sonya Kimble-Ellis, Arts Access writing facilitator, and Peter Giessner, Arts Access transporter, took turns reading short pieces of prose that had been written by the artists.

Arts Access makes it possible for people with disabilities to create fine art, assisted by professional artist-facilitators. The art covers a wide range of disciplines, not only painting, digital art and prose, but also dance, drama, poetry and sculpture.

Arts Access writing facilitator Sonya Kimble-Ellis reads “After the Movie” as the author Karen Frascella looks on.

 

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Navigating Highland Avenue

From left, Jenna, Jacob, mother Lauren and sister Callie.

Jacob Poleyeff has been dropping off and picking up his 11-year-old daughter Jenna at Matheny since May 2012, when she was admitted with a rare seizure disorder known as Lennox-Gastaut Syndrome.

“I would estimate that I’ve now taken about 250 trips up or down Highland Avenue in Peapack,” he says. “I can count on one hand the total number of cars that have passed me in the other direction on all 250 trips. And I have seen zero children – not one – on that road the entire time.”

Yet, a proposed expansion and renovation by Matheny to add 40 beds and about 60 employees was defeated by the Peapack-Gladstone Land Use Board in 2011, primarily based on complaints by neighbors that the increased traffic caused by the expansion would cause the road to become more unsafe and imperil the lives of those using it. That decision was recently upheld by a Superior Court judge in Somerset County.

The traffic issue, says Poleyeff, “is really nonsense. I would encourage anyone curious to take a drive up there and try to imagine how 60 additional cars a day – what’s that, one every 12 minutes? – could possibly impact the safety or even affect the lifestyles of these residents. While you’re at it, stop and visit Matheny and see some of the kids and the activities that take place. The entire outrage of what’s going on up there will become quite clear.”

“My daughter,” adds Poleyeff, “was lucky that a place opened up for her, but so many kids and their folks are waiting desperately. Forty openings doesn’t sound like a lot, but for those families, it would have made a world of difference.”

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Key LND care aspects

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

The most important aspect of the care of Lesch-Nyhan patients from both the practitioner and health system perspectives is collaboration with the parents and/or patient. A close second is the ability of the healthcare provider to demonstrate adaptability of the system and individuals involved when confronted with new challenges.

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. There are endless behavioral issues that have to be addressed when caring for a Lesch-Nyhan patient. Among them:

  • Safety issues relating to transportation.
  • Equipment issues relating to wheelchair seating systems.
  • Wound management.
  • Availability of transition care.

For these issues and many more, it is important for a healthcare institution to recognize the necessity of crossing departmental and institutional lines. It is also important that healthcare providers be able to collaborate with parents and other relatives of LND patients.

Third in a series of four articles on Lesch-Nyhan Disease. For more information, feel free to call Gary E. Eddey, MD, at 908 234-0011, ext. 737.

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