‘We can see how happy she is’

Kaila was born with spina bifida and a condition called cri du chat syndrome, a rare genetic disorder causing intellectual disability and delayed development. When she was 14 years old, her parents, Tad and Kim, decided Kaila had outgrown her special services classroom in her public middle school.

Their goal was to help her be as independent as possible. That is being accomplished at Matheny. “She can feed herself and move from room to room in her wheelchair without our help,” Kim says. “And, though she is not very verbal, we can see how happy she is. It’s just amazing the love the staff has for our child.”

Kaila is one of nine “Special Stories” in our new brochure, which you can download here.

Therapists who don’t give up

At birth, Jenna seemed fine. But when she was one year old, an MRI revealed some brain malformations, and at about 18 months, an EEG uncovered Lennox-Gastaut syndrome, a severe form of epilepsy.

The therapists at Matheny, says her mother, Lauren, “are doing a great job with her.  They have worked really hard to find just the right setup to support her. The therapists at Matheny are very devoted. They’re very creative. And they don’t give up.”

Jenna is one of nine special stories in our new brochure which you can download here.

Wheels for Whitney

Whitney Weldon is not your typical Georgetown University freshman.

In April 2001, then-9-year-old Whitney was diagnosed with fibrodysplasia ossifcans progressiva (FOP), a rare genetic disorder characterized by the abnormal growth of bone in soft tissue. In cases of FOP, muscles, tissues and ligaments actually develop into bone, progressively immobilizing the patient.

In March 2011, as Whitney was getting ready to enter Georgetown University in the fall, she and her parents, Bill and Hilary Weldon of New Vernon, visited Matheny. Whitney’s mobility was extremely limited, but she was not able to use a conventional wheelchair. She and her parents were hoping therapists and rehab technicians could evaluate her for adaptive equipment that would make her adjustment to college easier.

Matheny recommended the Permobil C500, a front wheel-drive power wheelchair with a standing feature. “This model allows the seating system to come up to meet her,” according to Jon DaSilva, Matheny rehab technician. “And we added custom foam in places to help with her comfort level.”

At first resistant to using a wheelchair, Whitney has since grown to embrace it. “I’m doing great,” she says. “I can get around faster than if I were on foot, and I have the freedom to get out of it if I want to.” Some of her early reluctance, she admits, was because she worried it would be a deterrent to meeting new people. But the wheelchair, she says, has actually contributed to the fun of the college experience: “I can get places quicker. People don’t have to wait for me. I have to wait for them now.”

Permobil, based in Lebanon, TN, develops, manufactures and markets power wheelchairs and transport and communication systems for people with functional disabilities. DaSilva says Stephen Burke, Permobil’s representative in northern New Jersey, “has been a huge resource for us, not just with Whitney but with other clients as well.” Whitney appreciates that Matheny has given her a Permobil contact in the Washington, DC area. “If I have a problem now,” she says, “they will send someone to make any adjustment I need.”

While Permobil can be a huge boon for FOP victims, there remains a tremendous need for research funding for the disease. The Weldon family, through the Weldon FOP Research Fund, has raised awareness and millions of dollars for the FOP Laboratory at the University of Pennsylvania School of Medicine. To learn more, visit the Weldon Fund.

Recreation therapy: “no labels”

“What’s really good about the recreation therapy program at Matheny,” says Leah Friedman, “is that the students and patients aren’t identified by their disabilities; they are identified by their likes and dislikes.  You don’t just look at someone and say, ‘Oh, he has cerebral palsy.’ You look at him and say, ‘He likes to play soccer.’”

Friedman, shown here in yoga class with a Matheny student, grew up in Short Hills. She spent 15 weeks at Matheny this past summer, splitting her time between working with adults in the Adult Services program working with children in the classroom at The Matheny School.

What really impressed Friedman, who earned a degree in therapeutic recreation from Ithaca College in May 2011, were the interdisciplinary teams of therapists. “In the classroom,” she says, “I would be working directly with occupational therapists, speech therapists and physical therapists.”

Throughout her college years, Friedman had done fieldwork, but it was mostly with recovering stroke victims. This was her first experience working with a young population and with people whose disabilities had been with them from birth.

“My first day at Matheny,” she recalls, “some of the adults immediately struck up a conversation with me. They were asking questions about me and school and everything. I was the shy one.” So fulfilling was her experience that had there been an full-time opening available at the end of the internship, “I’d have done it in a heartbeat. It’s just a great place.” She remembers a moment during her internship when, one of the kids looked at her and grabbing her hand said, “I’m really glad you’re here. You’re my best friend.” It doesn’t get much better than that.

Art’s many ‘dimensions’

Full Circle 2011 Dimensions, the annual celebration of the Matheny’s Arts Access Program, highlighted the many dimensions of the program’s artists. “They may be painters,” noted Eileen Murray, the program’s director. “They may be playwrights; they may be dancers or choreographers. Arts Access gives them the opportunity to sample all that and to find their passion.”

Arts Access enables people with disabilities to create fine art, assisted by professional artist-facilitators. At Full Circle 2011, held Saturday, November 5, 42 pieces of visual art were exhibited during a reception in the gallery. In addition, a stage presentation  showcased dance, drama and poetry. Professional dancers and actors, and some Arts Access staff members, performed with the Arts Access artists.

During the gallery reception, food tasting stations were donated by Ciao, Basking Ridge; cocoLuxe Fine Pastries, Peapack; Due Terre Enoteca, Bernardsville; Gladstone Tavern, Gladstone; 3 West Restaurant, Basking Ridge; and Village Office Supply, Somerset.

Speaking to a packed theater prior to the stage presentation, Steve Proctor, Matheny president, pointed out that Matheny patients often have great difficulty communicating, but, “Arts Access provides them with an opportunity for creative expression.” It reflects, he added, Matheny’s efforts, “to enrich their entire lives, to provide them with a full spectrum of life experiences.”

Pamela Cembrook, a resident of Bernardsville and Matheny trustee, was honorary chair of the event. Artist Dan Fenelon was curator of the visual arts exhibit.

Above, actress Alexandra Hellquist reads “My Pakistani Princess,” written by Mike Cornely, right.

Below, “Group Home” by Ellen Kane.

It was a treat!

Halloween was more than just candy and costumes for students and patients at Matheny. Holidays such as Halloween provide students and patients with recreational opportunities that improve their physical, emotional, cognitive and social well-being.  And they have a great time!

On Friday, October 28, they braved a haunted house created and inhabited by members of the recreation therapy department and marched, in costume, in a special Halloween parade.

Volunteers from the community and family members joined in the festivities, and members of The Friends of Matheny, an auxiliary group that raises funds for Matheny, served refreshments afterwards. It was indeed a Happy Halloween!

Above, Geri Brewer and her daughter, Rasheedah Mahali, an adult patient.

Below left, Jeanne May with her 19-year-old son, Mason Walsh, a residential student.

Below right, Jim and Ruby Yedloutschnig with their daughter, Alicia, an adult patient.

Kudos to our financial ‘coach’

Matheny is pleased to announce that Wayne Guberman, our director of finance for the past 25 years, was honored by NJBIZ as a finalist in its CFO of the Year competition for large nonprofits. He recently celebrated at the newspaper’s awards breakfast, held at the Palace at Somerset Park in Somerset, with his wife, Lita, left, and daughter Corie, along with several Matheny staff members.

According to NJBIZ: “Hospitals don’t grow by accident. Especially in today’s political and economic climate, it requires a sound financial footing and an appreciation for the shifting terrain of public financing. Wayne Guberman has delivered both for Matheny Medical and Educational Center.”

“You need to be realistic in preparing your annual budget and constantly stay in touch with the funding agencies so that you’re aware of the economic and political climate,” notes Guberman, whose original career goals were to be a gym teacher and basketball coach.

In the vernacular of a coach, he adds, “My management style is hands-on, but I am willing to give staff the opportunity to run with the ball.”

Thanks, Team Depot

More than 40 employees from Home Depot stores in Bridgewater arrived at Matheny on Friday, October 21, to do everything from cleaning up the nature trail to improving the adaptive baseball field to sprucing up the family courtyard.

Giving back to the community one of the chain’s core values. Team Depot is the company’s associate-led volunteer program. We hope this is the beginning of a lasting relationship between Matheny and the giant home improvement chain, and we thank them for their help.

In the photo above from left, Cleveland Drakeford of Somerset, Jennifer Hoffman of Atlantic Highlands and Lorin Suplee of Bridgewater lead Team Depot volunteers in a cheer before the work begins.

Below,  John Pingitore of Ocean Township helps clean up the nature trail.

It’s an honor

Matheny is pleased to announce this year’s recipients of the Lawrence T. Taft Award, given to medical staff who have demonstrated a long-term commitment to serving its patient population. They are David F. Howarth, M.D., M.P.H, and Alfred F. Tallia, M.D., M.P.H. Dr. Howard, left, and Dr. Tallia, right, were recently presented with the award by Gary E. Eddey, M.D., M.P.H., chief medical officer at Matheny. Both Drs. Howarth and Tallia are also part of the family medicine staff at Robert Wood Johnson University Hospital in New Brunswick and members of the faculty at RWJU Medical School.

The late Dr. Lawrence Taft was a member of the Matheny medical staff for 13 years. He helped establish the field of neurodevelopmental pediatrics and, as the first chairman of the Department of Pediatrics at RWJU Medical School, was a founder of the Institute for the Study of Child Development.

 

Can a video game inspire a dance?

It can if you’re Chris Saglimbene. At 25 years old, he’s a 20-year “veteran” of Mortal Kombat, remembering his days at Sports World in Paramus, N.J. “My father would get behind me and stand me up so I could use the arcade machine. So I got an early start in gaming.”

Saglimbene, an adult patient at Matheny, says that exposure helped improve his hand and eye coordination, and he continued to be a video game aficionado throughout his childhood and adolescence. So, when Mortal Kombat 9, the latest version of the game debuted, he decided to create and choreograph a dance inspired by the game.

“I thought it would just be a fun project,” Saglimbene says, “but as more and more of the dance got done, I began to feel it had the potential to make a big splash. As far as I know, I’m the only choreographer who’s done a dance based on a video game.”

Saglimbene worked through Matheny’s Arts Access Program, which enables people with disabilities to create fine art, assisted by professional artist-facilitators. He used specific movements from the game and asked the dancers to emulate them. “Our dancers are not exactly trained in stage combat, but they do it really well,” he says. “When there was something they didn’t get, I took them into the studio and showed them a YouTube video. They soaked things up pretty much like a sponge.” 

The two dancers, both Arts Access staff members, are Corey Bliss and Elizabeth Zelesny. Bliss graduated from the Ailey/Fordham BFA program in 2007 and trained at the New Jersey Dance Theatre Ensemble. She is also on the faculty at the Yvette Studio in Cranford. Zelesny has a BA in dance and journalism from Rider University and has studied at the American Ballet Theatre, Joffrey Ballet School and Princeton Ballet School, among others. 

Saglimbene’s dance, called “Reptile Theme,” will be performed at Full Circle 2011: Dimensions, the annual celebration of the Arts Access Program, to be held Saturday, November 5, from 3-6 p.m. at the Robert Schonhorn Arts Center on the Matheny campus.

After Full Circle, Saglimbene plans to make a video of the dance and send it to the creators of the game. “And then,” he adds, “who knows? I hope people walk away from and this say, ‘Wow!’ I want that ‘wow’ factor.”

Admission to Full Circle is $25.  To register, log onto www.matheny.org and click on Full Circle 2011 under What’s New or call (908) 234-0011, ext. 260.

Above, Chris is pictured with Corey Bliss, left, and Elizabeth Zelesny in costume.

Coming full circle

When Eileen Murray joined Matheny Medical Center’s Arts Access Staff in 2001, one of her first jobs was to design the invitation for the first Full Circle event. This year, her first as the Director of Arts Access, marks her 11th Full Circle event, which has become an annual celebration of the program.

Murray, shown here working with Arts Access artist T.J. Christian, became Director in August 2011. She describes Full Circle as, “a culmination and celebration of the work that has been done by the Arts Access artists. Some of it’s new; some of it is work that just hasn’t been shown previously. The main goal, though, is to showcase the artists and their work.”

The title of Full Circle 2011 is “Dimensions,” which, Murray says, is meant to represent, “the different dimensions of each of the artists. They may be painters; they may be playwrights; they may be dancers or choreographers. Arts Access gives them the opportunity to sample all that and to find their one passion or several different passions. The work that’s performed and exhibited is a reflection of the multi-faceted dimensions of the program.”

Full Circle 2011 will be held Saturday, November 5, in the Robert Schonhorn Arts Center on the Matheny campus. It will consist of a reception for visual art, from 3-4 p.m., followed by a stage presentation featuring dance, drama and poetry and concluding with another hour devoted to showcasing the visual art. “We hire professional actors and dancers to perform the work as our artists direct,” Murray explains. “The goal is to present the work in the most professional manner true to the artist’s vision.”

To register for the Full Circle show, log onto www.matheny.org and click on Full Circle Dimensions under What’s New or call (908) 234-0011, ext. 260.

Returning to a “special” place

Karen Deland started her teaching career at The Matheny School in 1979. She left a year later to teach in the Quakertown, N.J., public school system, then went to law school and then raised a family. But two years ago, feeling that she missed working with “special students,” she came back to Matheny. And she’s the first to say, she’s a better teacher for it all.

Deland, who was named the 2010 Educator of the Year at Matheny, says “flexibility and patience” are the keys to working with special needs children. Though her students’ medical conditions are more complex now than when she first taught here, she attributes Matheny’s technological innovations as critical for succeeding with these complicated teaching requirements.

Matheny is “top-of-the line technology-wise for the students,” she says. “Everybody’s treatment is different and individualized. Without the technology, we would be doing textbook learning, which isn’t really appropriate for our population.”

Deland, show above with student Daniel Gaudreau, was recently featured in her hometown newspaper, the Berkeley Heights Patch. You can read her story here.

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