Many ways to talk
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Volunteers Ellen Menschel, center, and Amanda Engelhardt, right, with member Jean Deer. |
There are many ways to communicate, Elaine Adler of Franklin Lakes said.
“They don’t all have to do with speaking. You can grunt, write, point and you can sing,” said the philanthropist and former businesswoman, who founded the Adler Aphasia Center in 2003 together with her husband, Mike.
The center, now celebrating its tenth anniversary, is unique in many ways. Not only has it spearheaded significant developments in aphasia research and created innovative programming for aphasics, but it is clearly loved by just about everyone, from members to volunteers.
Adler is no stranger to social activism.
The recipient of Women’s Philanthropy 2012 Lifetime Achievement Award – the Jewish Federation of Northern New Jersey’s website credits her for “extraordinary generosity and devotion to the global Jewish community, but especially the local Jewish community” – Adler and her husband, along with their son James and daughter-in-law Dana, underwrote the federation’s Adler Family Innovation Fund in 2010. The fund helps pay for “new and creative programs meant to solve problems critical to needs within northern New Jersey’s Jewish community.”
The Adlers also are major supporters of the Jewish Home at Rockleigh and the Anti-Defamation League.
But if Elaine Adler cares deeply about all these institutions, she is perhaps most passionate about the aphasia center.
“We are considered the gold standard in the world,” said Adler, whose venture into this field began after Mike had a stroke.
His progress was slow. The couple consulted a number of doctors, and “We finally found a speech pathologist who told him he could overcome this – he just had to get out there and try. He had a sort of epiphany when this man said this. He got a new attitude and decided to work on it.
“Mike started making progress and felt that he could do it, and maybe other people could, too,” Adler said. “We thought we had something to offer.”
Indeed they did. When they realized, after much research, that there were few resources for people with aphasia, the couple opened their own facility, incorporating – and generating – state- of-the-art services for people with aphasia, a brain disorder that most commonly affects a person’s ability to communicate.
According to gerontologist Karen Tucker, the center’s executive director, about 1 million Americans have this condition, whether caused by a stroke or an injury to the brain.
“Stroke and traumatic brain injury can happen to anyone, any time, any place,” Adler said. “It has nothing to do with age. A baby can be born with a stroke. It’s not just an elderly phenomenon. You don’t have to be old to become aphasic.”
Rising to the occasion
Adler exults in the center’s successes, citing the recently learned fact that someone who can’t speak still might be able to sing.
“We had a woman who always had her head down,” she said. “She couldn’t lift it. But when we played show tunes, she knew every word.”
In addition, she said, “We’ve got the best, most creative speech pathologists ever. Our people are doing things they never imagined they could do. In art class, people who have never picked up a paint brush are relaxing and enjoying their own art and that of their friends. It’s the same in photography class.”
Her immediate goal, she said, is “to make people comfortable – people who cannot easily communicate, who feel out of society.” It is to enable them “to come back and be comfortable among peers who have the same syndrome and can understand each other and their needs.”
While the couple still help fund the center, the facility also engages in some serious fundraising.
“We will never send anyone away because of money,” Adler said, noting that the center grants generous scholarships. “Most contributions are put into the scholarship fund. We charge $25 a day, two days a week. It actually costs us $90 a day, so we fundraise to make up the difference.”
“We’re the only act in town,” she continued, noting that some members come from as far away as New York City and Sussex County, while some arrive on a bus “provided through the graciousness of the Jewish Home.
“Our members are so happy,” she said. “They’re not bored. If they don’t want to be with one group, they’ll just move to another. If for some reason they don’t like the program they’re given, we will adjust it.”
The Something Special jewelry and gift program is fully elective, she said; items produced in that class are offered for sale and the money used to benefit the scholarship fund.
The center has already benefited thousands of people. Its effects have been felt in the Adler home as well.
“Mike is not in isolation, and it makes such a difference in his life and in mine,” Elaine Adler said. “He realizes who he is and what he is. He will always be an aphasic but he can overcome many frustrations.”
She pointed out that when somebody comes to the center for the first time, “they’re scared. They don’t know what to expect. They have been living in a horrible situation.” At the center, she said, they sit down with other people in a similar situation and “it gives them hope.”
There are some programs she particularly enjoys.
“You would have kvelled at ‘Fiddler,'” she said, citing the most recent musical show, performed by members.
In addition, she is impressed by the court program.
“They literally hold court,” she said, explaining that communications coaches choose real-life court cases and write scripts for a judge, defendants, prosecutors, and witnesses. To the best of their ability, members recite their parts and a jury of fellow members decides the case.
“It’s fun,” she said. “The judge wears a black robe and a British wig. and at the end, members learn what the real verdict was.”
Also noteworthy is the toastmaster program, “where members have to write a script and speak before their peers. Those who can, do. The more they do it, the better they get.”
Measuring success
If success is measured by growth, the Adler Aphasia Center has succeeded admirably.
In 2003 there was one center, four members with aphasia, four caregivers, six volunteers, and a staff of two. The budget was about $250,000, and there were just a handful of donors.
Today, there are two centers – a second facility opened in West Orange in June 2012 – 102 members with aphasia, 82 caregivers, 100 volunteers, and a staff of 16. The Adler Aphasia Center at Hadassah College, founded several years ago in Jerusalem, is the New Jersey center’s first international branch.
Center programs are varied, including a research-based individual therapy program as well as a jewelry and gift program that has netted more than $100,000 in three years for its scholarship program.
Enjoying the support of more than 2,500 donors and friends worldwide as well as annual grants from some 15 foundations, the facility now has a budget of $1.5 million.
“We’ve got a research department, led by a widely acclaimed and distinguished aphasia researcher, which conducts and publishes cutting-edge original research that documents the efficacy of our programs and services,” Tucker said.
And recently, she said, research demonstrated “that over a one-year period, [our] members experienced a statistically significant increase in functional language and perceived quality of life due to their participation in center programs.”
People power
While the success of the center might well be gauged by numerical growth and the expansion of programs, perhaps most striking is the loyalty and affection generated among members, staff, volunteers, and families.
Hackensack resident Rita Halpern has been a volunteer for nearly two years.
“I heard about it through a woman at the JCC,” she said. “I asked her what she was doing with her time and she told me about some things she did through the National Council of Jewish Women. I joined that and got a list of their activities. This was one of their volunteer opportunities.”
So far, Halpern has worked with about six or seven center members, participating mainly in the computer and tech groups.
Before working at the center, she knew the word aphasia but “didn’t really know a lot about it. I knew what could happen to people with strokes.”
What she didn’t know was that many aphasics can speak.
“The first day I came, people were gathered in the kitchen area. I was nervous. I didn’t know if the person [I was assigned to] would understand me. I didn’t think they spoke. I was shocked because there were conversations going on.”
It was not what she expected.
“When I left there, and even today, I’m so ‘up’ because the people are so positive. It’s a very inspiring, very safe environment. Even people who don’t speak well, or at all, don’t hide.”
Halpern subsequently learned that there are different levels of aphasia. Sometimes, she said, it takes a while to realize that someone who seems fine actually may have a communication problem.
On the other hand, she remembers learning a great deal during volunteer training from a man who was totally unable to talk.
“I knew so much about him because of his pointing to pictures – where he was born, what he did when he came here. He pointed to a map to show where he was from.”
If she has learned anything, she said, it is that she should not rely on first impressions – both in the center and in the outside world.
“I’ve learned more about aphasia and about people. I always try to see past the aphasia and find out about the person before the stroke. Even working on computer programs you get into side conversations. I always try to ask about their lives before, what they did. I look at people differently now.”
Halpern said she went to an advocacy group meeting with medical students, where members volunteer to talk with the visitors.
“They told [the students] about the idea of ‘no plateaus,'” she said, citing the mistaken notion that whatever gains aphasics might make will happen in first nine months. “They said don’t let anyone tell you that there’s a time limit.”
Ellen Menschel of Glen Rock started helping out at the center in January.
“I read an article in the Jewish Standard but cut it out and put it on the back burner,” she said.
But after leaving her job as a school nurse in order to pursue volunteer opportunities, Menschel pulled out the article once again and decided “it was one of the things I wanted to do. I wanted to do something meaningful, that would make me feel good while helping people who needed help.”
As it happened, someone in her synagogue told her about a neighbor who is a member of Adler.
“I remembered reading about it. I called that day and they said they were doing a tour at 10:30. It was 9:45. I said I’d be there.”
Among other center activities, Menschel helps out with jewelry-making, cooking, and Wii. While she goes in two days a week, she also fills in as a sub when needed.
“I’ve learned what a positive community it is,” she said. “People might think it would be a down experience but it’s not – it’s such a high. It’s so positive from members to staff to volunteers. I feel good every time I leave and when I know I’m going there. I come home and tell my husband what a great place it is.”
Whether working with jewelry, cooking, or Wii, “while you’re working you’re talking the whole time, finding out [about the members] and learning to listen more carefully. I’ve learned to be more accepting, encouraging members to be themselves.”
Even the volunteer coach, Ava Coffee-Burks, speaks in superlatives.
“I see hope and success here every day,” she says in her website blurb. “It is difficult to explain how blessed I feel to experience this place on a daily basis.”
Jan Honig, a longtime Fair Lawn resident who now lives in New York City, heard about the center four years ago from a friend in her book group who volunteered there.
Her husband, Charlie, 78, is now a member. He had three strokes about five years ago, and a fourth more recently.
“He’s in the chorus,” she said. “He takes it each semester because he loves singing. He can sing all the words in the song. When he’s singing, the aphasia is gone.”
Honig explained that the left side of the brain houses the speech centers, while “the right side is the part where music is located. That’s why singing is so good for most people who have aphasia. Charlie’s strokes affected his left brain and right arm and leg.”
As a law school graduate, Charlie Honig also enjoys participating in the mock trials.
“He’s done that five or six times,” she said, reeling off other activities her husband enjoys, such as presentations on music, film history, and sports.
He also has taken advantage of additional speech therapy, for an extra fee.
“This is very helpful,” Honig said. “The speech teachers as well as the entire staff are extremely kind and sensitive people.
“When [my friend] told me about the center, she said she couldn’t explain it, but it is just a very happy place, where she’s surrounded with laughter. She said she doesn’t know what the magic is. Being a member, I understand what she is describing.”
The emphasis at the center, she said, is on socialization and learning.
The Honigs have participated in various aphasia programs – including a four-week stint in Michigan and a six-week session in Florida – that focused specifically on learning.
“They didn’t have the kind of camaraderie that Adler just seems to ooze,” she said.
“We’re all in a similar boat, caregivers,” she said. “We enjoy one another, sharing and talking. I can’t bless the Adlers enough for their phenomenal kindness and generosity [and] what they have done for so many other people.”
Bea Gopoian of Teaneck heard about the center from Jan Honig. Her husband, Steve, who has had two strokes, is now a member.
“He likes art,” Gopoian said. He has also done cooking and computer.
Gopoian said she thinks her husband is enjoying the program, because “he’d put up a fuss if he didn’t want to go. It gives him structure and something to look forward to. Just having a positive thing to do is really important.”
“He already knows some people and he seems comfortable and happy,” she said, noting that her husband, 79, who had owned a computer business, is very handy and particularly enjoys the jewelry-making. “He’s usually cheerful when I pick him up,” she said.
In addition, she said, “It’s a positive thing for me. I go to the caregivers support group there once a month.”
Noting that the group is not only for people whose relatives are members of the center, Gopoian said that at one meeting, “Elaine sat with us. She sat and talked with us about how it was with Mike.”
“It’s a happy place, bringing people back into society, living again,” Adler said. “I always tell them that I charge them with becoming an ambassador – to get the word out so that we can help those in need.”
The Adler Aphasia Center will celebrate its tenth anniversary at the center’s annual gala on September 28 at Ramapo College. Mike and Elaine Adler are the honorees. For more information, call the center at (201) 368-8585 or go to www.adleraphasiacenter.org.
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