Hitting the switches

Five-year-old student Jack Harter hits a switch in response to a question from speech-language pathologist Christine Mayercik.

Speech-language pathologists search tirelessly for ways in which non-verbal children can communicate. Thanks to a donation from The Friends of Matheny, Matheny’s auxiliary group, the Matheny School has been provided with a brand new supply of augmentative communication switches, which can be used by younger students to express themselves.

In a recent classroom session, senior speech-language pathologist Christine Mayercik showed how they work. She combined images on a DynaVox speech-generating device with the preschool game Uno Moo to help students match animal figures and colors and answer questions about both. “If we put a blue sheep on a blue farmer, what are we matching, animals or colors?” she asked. The students would hit one switch for animals and another switch for colors.

The additional switches have had a positive impact on the students’ ability to communicate, and the hope is that this ability will continue to improve and expand. The inability to communicate is particularly frustrating for those students who understand what is going on around them but lack the ability to express themselves.

As part of a collaborative team, speech-language pathologists such as Mayercik provide complete assessments of speech and language and develop and implement programs to meet each student’s individual needs.

Cyclists will have new routes this year.

The five cycling routes at the 15th annual Miles for Matheny will have a new look. After three years with the same routes, Lee Brush, a resident of Annandale and former president of the Bedminster Flyers cycling club, felt it was time for a change. The 12-mile route is now 10 miles, the 23-mile route is now 25 miles and the 32-mile ride is now 35 miles. The 50 miles and Hills of Attrition rides will remain the same.

The 10-mile distance is the “family friendly” route. In the past, it hadn’t been so friendly because there were some difficult hills and the route crossed a highway.

All cycling rides will use the Whitehouse Station branch of our cycling sponsor, Peapack-Gladstone Bank, as a rest stop, reducing our rest stop locations from four to one. This will make delivery and pickup of supplies easier and should be more interesting for the riders and volunteers at the stop.

Miles for Matheny will be held Sunday, April 22, at Liberty Park in downtown Peapack, NJ. The 50-mile and Hills of Attrition rides take off at 10 a.m.; 25 and 35-mile rides start at 10:45 a.m.; and the 10-mile ride leaves at 11:45 a.m.

Miles for Matheny also includes a Kids Fun Run at 11:30 a.m.; a 5K race at 12:15 p.m.; and the Lu Huggins Wheelchair Walk at 1 p.m. All funds raised help support the Matheny Center of Medicine and Dentistry, which provides medical, dental and therapy care to Matheny’s inpatients and to children and adults with disabilities in the community.

For more information, log onto www.milesformatheny.org or call (908) 234-0011, ext. 260.

Arts Access facilitation manager Keith Garletts shows off his mask.

When you come to our Fat Tuesday Fundraiser to benefit Matheny next week, we hope you walk away with a new mask.

Hosted by the Verve Bistro Bar Lounge, the Mardi Gras-Carnivale Party features a mask auction—a key component of the fundraising activities made possible by members of Matheny’s Arts Access staff.  In Arts Access, people with disabilities are able to create fine art, assisted by professional artist-facilitators.  The Mardi Gras event is an opportunity for the facilitators to tap their own creative juices to benefit Matheny.

On February 21, 10% of all proceeds will be donated to Matheny, and anyone making a reservation on February 17 or 18 and mentioning Matheny will automatically redirect 10% of the bill to Matheny as well.

Verve is located at 18 East Main St. in Somerville. To make reservations for the Mardi Gras celebration, call 908 707-8655 and mention Matheny.

Studio coordinator Andrew Edge behind his mask.

Celebrating the official opening of the Matheny in-house pharmacy are, from left: Cathy Church, RN, director of nursing services; Denise Bettinger, Certified Pharmacy technician (CPht); Donna Mustillo, RPh; Steve Proctor, Matheny president; Robert Wysocki, pharmacy director; and David Wong, Doctorate of Pharmacy (PharmD).

Matheny dispenses between 62,000 and 65,000 doses of medication a month to our 101 inpatients, so the need for an in-house pharmacy has been apparent for some time. That goal has finally been accomplished, under the leadership of the pharmacy’s director, Robert Wysocki. The main advantage to having a pharmacy in-house, he points out, is “the clinical interaction between us and the doctors and nurses. Now, if there’s an issue, we can just walk down the hall.”

Many of the children and adults who live at Matheny, in addition to their primary diagnoses, have a long list of associated clinical conditions such as seizure disorders and dysphagia, with resulting aspiration problems. Because of these medically complex conditions, the proper medications are critical to their well-being.

Computer access is a vital tool in helping improve the quality of life for Matheny students and patients.

Matheny has received a Quality of Life grant of $7,431 from the Christopher & Dana Reeve Foundation in the Assistive Technology Initiative category. The grant will enable Matheny to acquire eye tracking equipment and scanning software “for kids that can’t use their hands to operate a computer but have good visual skills,” says Christine Mayercik, senior speech-language pathologist. “We’re hoping this will be a way to motivate them.”

At Matheny, technology is at the forefront of efforts to broaden our patients’ and students’ ability to live as normal a life as possible. Speech-language pathologists continually explore various ways to accomplish this.

The Christopher & Dana Reeve Foundation regularly awards grants to non-profit organizations that provide services to individuals with paralysis. Quality of Life grants are awarded to programs or projects that improve these individuals’ daily lives. Joseph Canose, a senior vice president at the Foundation, said the competition for funds this year was “extremely fierce.”

Ryan O'Connor.

If you like to dance, want to help Matheny—or better yet, both—save Friday, April 20. That’s the date for the Dance-A-Thon at Immaculate Conception School in Annandale, NJ, which this year will benefit Matheny.

Debbie O’Connor, whose eight-year-old son Ryan is a student at the Matheny School, is the Social Concerns chair of Immaculate Conception’s Home and School Association. She suggested Matheny as this year’s beneficiary, saying, “Matheny tries to provide these children with every opportunity to experience life at the highest quality possible. They set no boundaries for any of these children but allow them to thrive in a safe medical environment.”

Sharing her own experience, she said, “We were told there was no chance Ryan would ever walk. On Christmas Day 2008, at the age of almost six, Ryan stood up and walked, completely unassisted for an extended period of time. This would never have been possible if he were not in the hands of the staff at Matheny.”

For more information, contact Debbie O’Connor at djoconnor6@comcast.net.

Gov. Christie at the NJHA annual meeting.

So said New Jersey Gov. Chris Christie, who praised New Jersey hospitals and the New Jersey Hospital Association at the NJHA’s recent annual meeting. Matheny is a member of NJHA, which is a not-for-profit trade organization committed to helping New Jersey hospitals and health systems provide quality, accessible and affordable care to their communities.

Gov. Christie recognized the financial pressures confronting hospitals in the state but said the government cannot “continue to buttress up [struggling] hospitals. That’s not the way to sustain a viable and vibrant health system in the state.” The Governor commended New Jersey hospitals for managing to serve their communities and patients through difficult times, adding, “I appreciate what you’ve done – how you’ve hung in there.”

Matheny has filed an appeal in New Jersey Superior Court to overturn the Peapack-Gladstone Land Use Board’s decision that Matheny is not a “permitted use” in its current location. The Land Use Board made this decision even though Matheny has existed in its current location since the 1950s and has received many land use approvals for various projects over the years.

The appeal also seeks to overturn the Board’s decision to deny Matheny’s expansion plans. The long period of time that elapsed during the Land Use proceedings has exacerbated what was already a criticial situation — the number of children with medically complex developmental disabilities who need a residential facility.

Matheny is proud to be a member of the Peapack-Gladstone community and appreciates the support of the majority of its residents.

A happy crew at the end of the Lu Huggins Wheelchair Walk in 2011.

We are looking for volunteers to help make the 15th Miles for Matheny fundraiser and community event the best ever. We need people to assist with set up, registration, tee shirt distribution, rest stops and lots more!

Face painters, strolling musicians and magicians and wheelchair pushers are also needed. Opportunities for groups and individuals are available. Be a part of a great day!

Want details? Ready to sign up now? Contact Gail Cunningham at 908-234-0011, ext. 282 or email volunteers@matheny.org.

Sandra Van Nest.

Sandra Van Nest believes in taking baby steps.

A licensed clinical social worker and developmental interventionist in New Jersey’s Early Intervention system, Van Nest often is confronted with “two-year-olds who don’t know how to indicate what they want.  They don’t have any words.  They don’t really pay attention to the people around them.  By slowly and surely working with them for several hours a week, over a year or 1 1/2 years, I watch them go from that to, by age three, looking at their mother when she comes in the door and saying, ‘Momma’. That’s absolutely the most amazing thing. They’re learning how to speak, and they’re doing those intellectual things; and they’re also catching up on that emotional side; and they’re really connecting with the people in their world.”

Van Nest is also a field supervisor in Matheny’s community services program.  In that role, she is now coordinating a new project  to teach social skills to two-and three-year-old children with autism spectrum disorder or ADHD, or who have difficulties with sensory integration. “Parents of the children I see,” she explains, “often report to me that their children really have a hard time being in a group or out in public.  Their children have a hard time with the loud sounds, bright lights and unpredictability of their toddler peers.  And, if you are a child who doesn’t speak, the only way to show your displeasure is to yell, cry or tantrum.  These parents are looking for a way to help their children feel more comfortable in groups of peers and other public places.”

The New Jersey Early Intervention system, she points out, “does not usually provide for group work.  It is a wonderful system that emphasizes the individual child and his or her family.  However, the parents are looking for other therapy options that include small groups with an emphasis on social skills.  We, at Matheny, are excited to be filling this need within our community.”

If you’d like more information about this program, call (908) 234-0011, ext. 751 or email lnewsome@matheny.org.

Anthony LaFond, an artist in Matheny’s Arts Access Program, is celebrating the publication of one of his poems, “God’s Gift to Me” in the winter 2012 issue of Breath & Shadow, a journal of disability culture and literature. The 30-year-old LaFond, who has muscular dystrophy, has been writing since he was 17 years old. While he enjoys writing stories, his real passion is poetry.

God’s Gift to Me

My wheelchair is a part of me.
When he moves, it is like a tank under my control.

My wheelchair has a chair like a portable bed.
His wheels are round like a balloon.
And his motor moves me as fast as a 10-speed bike.

He is shaped like a throne that is sitting on top of the world.

He rides like he is flying me through the air.
The wind blows by like I’m going downhill on a rollercoaster.

Sometimes when I go fast, my eyes start to cry.
I feel what he feels.

He goes where I go, just like a shadow.
He tells me when he is hungry and tired.

Sometimes he reminds me, he has a mind of his own.
He shows me when he needs a change of feet.
His one eye glows at night when I need light.

He carries my bags all day long and never lets go.
He is my defense weapon against anyone who wants to hurt me.

His timing is one of a kind.
When I let go of his messenger, he stops on a dime.
When I need him to zig and zag, he does it with such skill.

He reminds me of who I am, and I am very thankful for that.
He reminds me of what I have and not what I don’t have.

He is God’s gift to me, and when he dies,
I will have to get another.

But each gift God gives me does not make me feel the same way.
They each have their own talent.

My chair’s name is Junior, after my first chair,
Lightning,
And I his father.

He is me
And I him,
And I shall never forget that.

LaFond, above, read “God’s Gift to Me” at Full Circle 2011 Dimensions, the annual celebration of the Arts Access Program. Arts Access enables people with disabilities to create fine art, assisted by professional artist-facilitators. Breath & Shadow is the only online literary journal with a focus on disability. It is written and edited entirely by people with disabilities.

Thanks to Sen. Christopher “Kip” Bateman (R), Sen. Robert W. Singer (R) and Assemblywoman Mila M. Jasey (D) for sponsoring bills that were signed into law by New Jersey Governor Chris Christie on January 17 providing families of persons with developmental disabilities greater autonomy in making decisions about participation in potentially beneficial research.

The original bill was drafted by Sen. Bateman in response to a suggestion by Matheny.

The law resolves an inconsistency regarding guardian requirements contained in two previous pieces of legislation: The Developmentally Disabled Rights Act of 1977 and the Access to Medical Research Act of 2007. It also expanded the range of studies that are allowed to include ones that might not have direct benefit to the individual participant, but might have broader benefit to persons with disabilities.

The practical benefit of the new law is that families of persons with developmental disabilities will have the freedom that other families enjoy to weigh the risks and benefits of an appropriately reviewed and approved research study. And they will make their own informed decisions about whether or not their family members will participate.

Above, from left: Matheny student Bryan Desatnick, teaching assistant Josh Burke, Sen. Bateman and student Mason Walsh during a previous visit to Matheny by the Senator.