HORIZONS A NEWSLETTER FOR FAMILIES AND FRIENDS OF CROTCHED MOUNTAIN SPRING 2006 FROM THEPRESIDENT Donald L. Shumway Crotched Mountain lost a good friend, recently, when Dana Reeve passed on. There are people that you meet who have the ability to connect immediately on a personal and human level. Dana was one of those people. When she came to Crotched Mountain two years ago to help dedicate the tree house, we were a little nervous about her “celebrity” and the fact that it was threatening to rain on our celebration. We needn’t have been. Dana was warm and real and spontaneous in her enthusiasm for all that we do here. No one who was here that rainy day will soon forget how Dana made everyone feel that she was the lucky one to be with us for the opening of the tree house, wearing a Crotched Mountain shirt. We were further delighted to learn that the Quality of Life grant made to Crotched Mountain by the Christopher Reeve Paralysis Foundation to help build the accessible tree house became one of Dana’s favorite projects. The outpouring of emotion and sense of loss at her death, here in New Hampshire and across the country, was palpable as recorded in the many newspaper, radio and TV stories. Her connection to Crotched Mountain and the tree house is part of the legacy she left of kindness, encouragement and support for people with disabilities, their care givers and their families. Our case managers and clinical staff know the experience of losing loved ones on an all-too- frequent basis. Recently we have also lost several beloved staff persons. Losses remind us how we need to support each other and how important each day is. Responding to Katrina Caring for others has always been an important theme of Crotched Mountain’s mission and culture, and it came as no surprise when, shortly after the devastation of Hurricane Katrina, students, adult residents and employees began asking what we at Crotched Mountain could do to help. The Department of Rehabilitation raffled a pair of donated Atomic Skis; the girls of House Six and the Cedars baked and sold their famous pumpkin bread; the Student Council of Crotched Mountain School held a “Kiss the Dog” contest with four popular principals, teachers and specialists competing to lose! The Recycling Department held a special collection of bottles and cans; the residential department planned a successful penny sale; our Brain Injury Center offered a raffle on its annual Awareness Day. Many staff members made individual gifts. In all, over $3,500 was raised by Crotched Mountain employees. Some of the money was ear-marked for the Red Cross. But many Crotched Mountain volunteer fund raisers wanted their support to directly impact an organization more like ours. After considering many in need of funding, we settled on the Pointe Celeste Therapeutic Riding Center located in Plaquemines Parish, LA. The Center was home to a dozen specially trained horses where 75 special needs students looked forward to therapeutic riding each week, before Katrina, and where they were accommodated at no charge. Damaged extensively, the nonprofit Center estimates that repairs will cost $500,000. The staff there is especially concerned about the students, whose disabilities range from paraplegia to brain injury, muscular dystrophy to cerebral palsy. “If you could only see the faces of these children as they are lifted onto the horses,” said Zelda Gillan, director for the Center, “you would realize how vital it is to get the Center up and running as soon as possible. For many of these children the horses make them feel as if they are walking again and the self-confidence they feel is immeasurable.” I thank each and every one who put someone else’s needs before your own. You have helped make an important difference in the lives of people you will never even meet. Don THE IREX EXPERIENCE VIRTUAL REALITY MAKES THERAPY MORE EFFECTIVE AT CROTCHED MOUNTAIN Therapy takes many forms at Crotched Mountain – adaptive dance, skiing and biking, water sports and team sports, and now a first for New Hampshire – IREX! This new Interactive Rehabilitation Exercise equipment combines a computer with virtual reality software to create the interactive environments of a ski slope, soccer field, even a shark-infested ocean. As an integral part of the action, the patient, who wears reflective gloves, is virtually catching or kicking, reaching or ducking, or moving to avoid an obstacle, engaging physical and cognitive skills in the process. “This is so cool,” says Brandon, who is recovering from a brain injury, as he “rides” a snowboard down a hill, reaching way outside of his base of support and laughing all the way! Before the advent of the IREX, Brandon’s physical therapist, Pam Nation, was concerned that his progress had plateaued because he was overly cautious. “I knew he could do much more,” she smiles, “but he didn’t know that!” However, using the IREX, Brandon quickly progressed from sitting in a chair, to using a stool to standing without his cane. “He is making excellent new gains in balance and support,” according to Pam, and he loves the idea of zooming down a mountain and over jumps, driving a race car around a track and scuba diving among sharks! Children and adults at Crotched Mountain who have been working on therapy programs for years find that the IREX is a new and enjoyable way to build strength, endurance and coordination. “The several virtual reality environments challenge their visual perceptual abilities, response time and sustained concentration,” says physical therapist Lisa Henry. “And the fact that they get a score encourages them to improve their performance and work even harder.” “Virtual reality is very fun,” remarked Jenny, a student at Crotched Mountain School, who as a dancer is working on her upper body strength. Making it fun also encourages more rounds of activity before feeling fatigue. “Our decision to acquire the IREX system is a first for NH, and as far as I’m told, New England,” says Dave Kontak of the Assistive Technology Department at Crotched Mountain. In addition to the more obvious physical and occupational therapy applications, the IREX is also being used to address “initiation” and vocal quality. The IREX is made possible at Crotched Mountain through funding from a USDA Rural Utilities Services grant. Support from foundations, individuals and corporations helps give each and every child and adult we serve the opportunity to grow, develop, learn, strengthen and recover. And, in this case, to have some fun while working hard. Jenny works on her therapy using the IREX System with guidance from physical therapist Lisa Henry and David Kontak, director of Assistive Technology for Crotched Mountain. CLEMENT’S JOURNEY FROM THE SUDAN TO CROTCHED MOUNTAIN Clement knows something about life's difficult journeys and making progress. The quiet young man who provides personal care at our Children’s Specialty Hospital, has a way of communicating, often without words, as he interacts with the children and adolescents we serve, many of whom are nonverbal. Working on therapy exercises, taking a youngster swimming, or just listening, his engagement is total. “Clement is one of the most caring and intelligent people I’ve worked with,” says Sandy Knapp, director of nursing for Crotched Mountain. “He has a confidence, sensitivity and grounding far beyond his years.” “When I see [the children] smiling, I feel like I am doing something good,” says Clement of his young patients. “I like to see them make progress.” Almost 20 years ago, in a village in southern Sudan, Chan (his name then) and his eight brothers and sisters tended their cattle and grew sorghum, okra and millet. He had never been to school. He had never been away from his village. He is not even sure how old he was on the day, in 1987, when militants attacked. In the burning, raiding and killing that followed, Chan’s family scattered. Over the next three months, he and other refugees were stalked by lions as they made their way to Ethiopia. “You had to keep walking or you would be left behind,” he remembers, his voice soft but very distinct. In Ethiopia more than 16,000 Sudanese refugees gathered in United Nations camps. But in 1990 war broke out in Ethiopia and the refugees fled again, first to Sudan, and eventually moving across the desert to Kenya. “The people were so lost,” he recalls, having no idea if any of his family had survived or where they might be. In Kenya, Chan went to his first school, learning Swahili and English. He loved school. “I was investing in my future,” he smiles, “I had to learn all I could.” Four years later, he graduated from the 8th grade and went on to finish secondary school. During that time, the film Lost Boys of Sudan was produced and the United States began to bring refugees here. Now baptized “Clement,” with a wife, Josephina, and a baby daughter, he applied to come to the US for “a better life for my family.” Arriving in Worcester, MA, in 2001, Clement’s first impressions were of smiling faces and friendly people. “Everyone was so kind. Everyone helped. We were all strangers.” His face still registers disbelief. He held two jobs and became certified as an LNA through the Red Cross. “Friends invited me for Thanksgiving, helped me with English, and with sending money to my family in Kenya. It was wonderful earning my own money.” Clement began trying to bring his family here, but they lacked the required documentation and were turned down repeatedly. Then someone at his church suggested Senator Gregg’s office. “I never met Senator Gregg,” Clement explains, “but his staff always answered my letters.” When Clement’s family arrived in 2005, he credited Senator Gregg. Clement is now an LNA in our Children’s Specialty Hospital, where he learned that Senator Gregg’s grandfather, Harry Gregg, founded Crotched Mountain. He works full time at the Hospital, commuting from Manchester, NH, where he has settled his wife and three young daughters. He attends Hesser College and has completed an associate degree in Criminal Justice. “I thought I wanted to study law,” Clement explains. “But I love my work at Crotched Mountain so much that now I am thinking of going for my RN degree.” Clement continues to search for his parents and siblings. But his life, he says, is here. His work is fulfilling, his family is happy and he has a future. Because the majority of our Children’s Specialty Hospital patients are Medicaid funded, hospital services are reimbursed at just a fraction of actual cost. In order to provide the wide array of specialized services, Crotched Mountain relies on donor support to fund the difference. Thank you! ANOTHER SIDE OF THE MOUNTAIN Tucked away in a variety of communities, is another side of Crotched Mountain, where people with disabilities and people who are older make their homes in affordable, accessible, apartment complexes. Over the past two decades, Crotched Mountain has developed four apartment complexes, combining HUD funding with contributions from Crotched Mountain Foundation, to provide the adaptations for people with special needs to call these apartments, “home.” In the small town of Whitefield, NH, a renovated school offers 24 one-bedroom units for low income singles and couples 62 years and older. In Albany, NY, Manchester, NH, and Portland, ME, one-bedroom accessible apartments are home to single people of all ages with disabilities ranging from brain injury to Spina Bifida, MS and MD, all of whom lead self-directed lives. “As the population ages, people are making it clear that they want to stay in their own homes,” according to Lisa Romprey, property manager for the McIntyre School Apartments in Whitefield. In order to “age in place,” the elderly and people with disabilities rely on an infrastructure of services. Home health care, personal care assistants, homemaking assistance and transportation are the resources that help keep people with special needs independent. Sue Taylor, who manages Crotched Mountain’s Courtyard Apartments in Manchester, relates the story of Penny, who was 38 when she was referred because she had ALS, a degenerative muscular disease. “Penny was very aware that she had a limited amount of time left and she wanted to spend as much of it with her teenage children as she could. She personalized her apartment, ate when she wanted, stayed up late or arose early, and invited her friends to visit her, involving them and her family in hospice counseling. When she took her last breath, it was in her own bed.” Peter, who uses a wheelchair, moved to the Greenbush Village Apartments in New York after living with his family for many years. He wanted to have his own place, and once there, he began to use public transportation, found a part-time job, and took an adapted driving course! He is now driving his own adapted vehicle. “There are always people on my waiting list for the apartments,” says Taylor. “There just isn’t enough safe, affordable, attractive, accessible housing anywhere.” The people who live there agree. “It’s one of the best places in the city.” “Close to downtown.” “They’re always making improvements,” are just some of the responses. The garden beds are tended by residents during the summer months. The atmosphere is positive. Residents have active social lives with family and friends outside the complex and get together, themselves, for Super Bowl and Red Sox games in the common living room. Although she is on call 24 hours a day, Taylor rarely has a request after hours. She manages the space; residents make their own arrangements for care and transportation. Many of the people who live in the complexes moved from nursing homes or would be living in nursing homes if the apartments didn’t exist. Crotched Mountain’s accessible apartments make a significant impact on the special needs population. The residents coordinate their own services. Their families are thrilled. THE FACE OF PHILANTHROPY Anthony M. Tremblay is the new Vice President for Development at Crotched Mountain Foundation. He joined the organization in January, 2006. Since 1997, he had been Director of Development for the American Association for Cancer Research, based in Philadelphia. Mr. Tremblay has been involved in education and educational administration, non-profit management, and fundraising for over 30 years. As I look around the beautiful campus of Crotched Mountain and see the amazing work being done here to benefit children and adults with disabilities or traumatic brain injury, the evidence is everywhere of the vital role our generous donors have played in helping to create and sustain this place of healing and learning. The tradition of private philanthropy in support of the non-profit organizations on which we all rely is now a permanent part of our American culture. It was the gifts of major figures in mid-century America, together with generous support from families and businesses throughout New Hampshire and New England, that helped Harry Gregg and his friends create the original state-of-the-art hospital for children high on Crotched Mountain more than fifty years ago. In the decades since, literally thousands of children and adults have been helped by the dedicated care-givers and educators who are the heart of the Crotched Mountain community. When it was founded, Crotched Mountain was unlike anything available in the country, and that can still be said today. Our programs and services have evolved to meet the changing needs of children and adults with disabilities. No other organization in the Northeast offers the breadth and scope of high quality services of Crotched Mountain. In my brief time here, I have been impressed by the commitment of my new colleagues–by their willingness to extend themselves to help, by their concern about an array of unmet needs and inadequacies in our healthcare system, and by their commitment to do still more to enable everyone in the Crotched Mountain family to thrive. This desire to be of service was integral to our Founder’s vision way back in the 1940s, and it remains so today. Keeping that founding dream alive and building upon it for the future is the challenge facing the leaders of Crotched Mountain today. Excellence costs money and competition for charitable dollars is greater than ever. In the coming months, we at Crotched Mountain will be reaching out to old friends and working hard to bring new friends into the fold. Crotched Mountain is still a unique resource, and is needed by our community members more than ever. I hope you will join in the effort. Become involved – if you do, I am confident you will find joy in the results. Gala 2006 Saturday June 17 Crotched Mountain Foundation Greenfield, NH Cocktails 6:30 PM Dinner 7:30 PM Black Tie optional Dine, dance and socialize at our seventh annual Gala hosted by the Boards of Directors of Crotched Mountain Foundation and Monadnock Community Hospital. Proceeds will benefit the Accessible Recreation Program at Crotched Mountain and Monadnock Community Hospital's Healthy Teeth Program. Crotched Mountain Golf Classic Monday, July 24, 2006 at Stonebridge Country Club, Goffstown, NH benefiting Crotched Mountain School hosted by the parents of our students. Advance registration required. Putting contest: 8 AM Shotgun Start 9 AM $135 per player includes greens fees, cart, lunch, awards buffet reception. for more information...to attend either event or to be a sponsor, contact Pat Whitney at 603 547-3311, ext 471 or patricia.whitney@crotchedmountain.org BRIEFLY Noted Six-year-old KEAGAN WATSON of Lempster, NH, shown here with his mom, Tracy, couldn’t wait to try out the new ramp that was built at his home with funds from the Harry Gregg Foundation and help from his dad, Aaron. The Harry Gregg Foundation makes grants to individuals with disabilities who are NH residents. For more information contact Robin Boyd at 603-547-3311, ext. 401. MICHAEL COLE media associate and webmaster at Crotched Mountain, recently testified before the NH Banks and Insurance Committee in favor of SB0273 about the importance of reasonable accommodations in the workplace for people with disabilities so that they can contribute to our economy and our community in a meaningful way. TONY BOOTH, former senior manager for Crotched Mountain Community Residential Services in Derry, shown below with Crotched Mountain Foundation Chairman of the Board, Roger Ball, has resigned his position after 15 years with Crotched Mountain to follow a long-held dream. Tony and his wife, Roxanne, both ordained ministers, have relocated to Swaziland, Africa, to open a health care clinic to treat people with HIV and AIDS. JAN BEVACQUA and JON DASH of the Crotched Mountain residential staff are congratulated by Jack Jarvis of the US Department of Labor and Lisa Miller, continuing education coordinator for Crotched Mountain, for becoming the first two individuals in New Hampshire to complete the National Apprenticeship Program for Direct Support Professionals. Over 144 classroom hours and 2,000 hours of on-the-job training experience are just part of the certification requirements. KEVIN, JOE, SHAINA, CHESTER and CARL of Jean Polovchik’s Science Class at Crotched Mountain School helped build an electronic story board, displaying 15 of the most prevalent invasive plants in the Piscataquog Watershed. The interactive story board, constructed with help from Jim Orr, director of environmental projects for Crotched Mountain, enables anyone to test and increase their self-knowledge of invasive species. THE CHOICES WE MAKE Kevin Kurowski tells his story to a group of 5th and 6th graders. “I was an entrepreneur while still in grade school, selling night crawlers to local fisherman, to earn money for toys I wanted.” The children listen intently. When he graduated from high school he was already a fast food restaurant manager. People called him a “go-getter.” He then worked as a retail detective, took courses, won several awards and eventually managed a staff of eight, covering 13 retail stores. He returned to restaurant management, put in long hours, but was very successful. Life was good. He had friends, he married and he loved spending time on his own Bass Tracker. One night, he relates, he “chose” to drive home after drinking and his life changed forever. He caused a car accident that left him in a coma. When he woke he found that he was a paraplegic. He had the use of his arms, but no control over his body from his chest down. Much worse, he discovered that the occupant of the other car had died. “I killed someone,” he said, his voice catching. “The emotional pain of what I had done was way worse than the physical pain I was experiencing.” evin is grateful to his wife, who has stood by him, but he has lost his friends, his income, his lifestyle and his independence – almost everything that was once important to him. The family of the man he killed has forgiven him, he says, but he cannot forgive himself. Currently recovering at Crotched Mountain, Kevin told his story to the after-school student group as part of a Mothers Against Drunk Driving (MADD) awareness program. “I will never again run a restaurant, drive a car, hike or hunt,” he told them. “There isn’t a day that goes by that I don’t think about the choice I made and the terrible tragedy I caused by drinking and driving.” There is absolute silence in the room. Then, the youngsters ask some hard questions. And Kevin answers them head on. As part of his plea agreement, Kevin is performing 300 hours of community service for MADD. This is his mission, now. To tell his story to anyone who will listen in the hope that he can prevent it from happening again. HORIZONS Published by the Office of Advancement Edited by Pat Whitney Director of Annual Giving Crotched Mountain Foundation One Verney Drive, Greenfield, NH 03047 603-547-3311, ext. 471 patricia.whitney@crotchedmountain.org Photos by Joan Crooker, Pat Whitney, Laura Ochoa, Tracy Messer, Peg Lins As a service to our readers, please write us at the above address if you wish to have your name removed from our mailing list for fundraising requests supporting Crotched Mountain.