HORIZONS A NEWSLETTER FOR FAMILIES AND FRIENDS OF CROTCHED MOUNTAIN WINTER/SPRING 2010 VOLUME 10 NUMBER 1 Healing and a New Beginning by Don Shumway, President and CEO I OFTEN USE THIS FORUM to update you about the programs at Crotched Mountain that serve people with many kinds of disabilities. But this time I’d like to talk about one young man, whom I’ll call Chris, whose life has changed significantly for the better while at Crotched Mountain’s Cedars Point program for adolescents with serious emotional disturbances. Chris, who is 17, came to us after residing in a number of different living situations. He was referred to us because his conduct had become problematic and those caring for him could no longer manage his behaviors. Since arriving in October, Chris has come a long way, in part because he has begun to experience the safety of trusting relationships that have eluded him his whole life. This was accomplished through a clinical program that focuses on self-regulation of emotions and behaviors, and finding self-worth through self-acceptance, knowledge and understanding. Granted, healing takes time and a great deal of hard work, and Chris has a long way to go. But we know the healing has begun and that, with continued care, safety and guidance, it will continue. Chris’ healing journey was facilitated not only by skilled clinical interventions. His healing was also advanced by something more ineffable— a trusting connection we can’t measure, hold in our hands or post as an image on our website. You can only experience it through knowing Chris and witnessing the progress he has made in his journey of healing. One way to get a glimpse into this journey is to read the moving songs and poetry he’s composed since arriving at Cedars Point, one of which he has agreed to share below. "Dont I have that right to believe, and don't I have the right to see. Don't I have that right to feel, and don't I have the right to dream. I dream of a family, I see me in a family. I feel loved, is that not too much to ask for. Maybe one day, I'll pick up a stray, hand on over the wheel. For my feelings there so real. Sitting in the passenger side, seeing my life go by." Chris and young people like him are our teachers. They remind us every day of the resiliency of the human spirit and that the work we do is valuable to the people we serve — and to the larger world. When Chris returns home it will be with new skills and confidence, and the knowledge that healing is possible, life can get better. RATS! ON DECEMBER 17, Crotched Mountain School’s (CMS) Performing Arts classes, along with the Active Ingredients Dance Troup, performed Rats! The Story of the Pied Piper. The performance was directed by music teacher Bonnie Arpin and reading specialist Karen Vincent. Together, they worked for many months with the students and staff of the school to make this delightful holiday production. It's a Kid's Life Caring for the Whole Child at Crotched Mountain FOR MOST CHILDREN, a visit to the hospital is a rare and brief occurrence. But for children with chronic, medically complex conditions, the hospital is a fact of life. At Crotched Mountain Specialty Hospital, medical care comes with some pretty great amenities, allowing students attending Crotched Mountain School (CMS) to enjoy life as typical kids, as they go to class, explore the woods, play video games, swim and participate in Special Olympics, dance and even hang out in a tree house. This may come as a surprise to those who know the hospital as a rehabilitation center for people recovering from brain injuries and other neurological conditions. But for many years now, we’ve provided skilled nursing care for children with complex medical conditions so that they can go to school. Today, eight children receive skilled nursing supports through the hospital and attend Crotched Mountain School. “It takes a community like Crotched Mountain to provide for the whole child,” says Jean Harding, a care coorinator who works with the eight students and their families. “We offer students a busy life with all the benefits of a full campus of activities.” The hospital works very closely with CMS, a fully accredited special education school adjacent to the hospital. “If a student has a bad night, the teacher will know about it, or if a student isn’t feeling well in class, communication with the medical team is immediate. Dr. McCartie, our full-time pediatrician, has a relationship with all the students on the unit and sees them in all settings,” Jean adds. Thirteen-year-old Maria has attended CMS since 2005. She is diagnosed with autism, developmental delays and a number of other complex medical conditions that require 24-hour skilled nursing care. She came to Crotched Mountain Specialty Hospital after her family could no longer provide the care she required at home. Maria’s mother, Carol, is a nurse practitioner. She says that even with her advanced medical training, Maria’s needs were too complex to manage at home. “We did everything we could, and it just became too difficult for everyone." Maria is also unable to digest food, and receives nutrition and medications through a J-tube that connects directly to her intestines. This, along with other medical needs, requires her to leave the classroom several times a day and return to the hospital unit for care. “When she was at home, if she had to see the doctor, I would leave work, pick her up at school, take her to the appointment and then bring her home,” says Carol. “I was missing work and Maria was missing school.” At Crotched Mountain, everything Maria needs is within a short walk, beginning with her early morning, 90-minute swim in the therapy pool where, with Lisa Brissette, her LNA and teaching assistant, Maria enjoys playing in the water. “The pool satisfies her sensory needs. She loves it and would spend all day here if she could.” says Lisa. “After expending energy here in the morning, she can focus better in class.” Maria likes to be on the move. In the classroom, she might spend 20 minutes using her picture communication system to choose activities like playing with her favorite musical toy, or doing a shape-matching puzzle. “Then she’s ready for a walk,” says Lisa, who admirably keeps up with Maria’s impressive energy level. Teacher Ellen Banning notes that since arriving at CMS, Maria, who is non-verbal, has made improvements making eye contact and communicating with pictures and hand gestures. Carol couldn’t be happier. “Crotched Mountain goes above and beyond. I especially trust the staff with non-verbal patients. I see how they interact with them and get to know them. I never have to worry,” she says. Jean says the unit does everything it can to make the atmosphere as warm and home-like as possible. “It’s family-centered care. We’re never closed to family and friends who can take part in therapy and other campus activities.” Carol agrees. “Crotched Mountain provides love. There is nothing better than this.” The Right Tools Reveal the Right Stuff WE MAY BEMOAN the intrusion of technology in our lives - cell phones, e-mail, Twitter and too many remotes with too many buttons-but for some, technology is the medium that helps them shine. The staff of ATECH Services of Crotched Mountain can attest to that. ATECH provides assistive technology solutions to New Hampshire residents with disabilities. They’ve witnessed again and again what the right tools can do to help an individual achieve his fullest potential. Five-year-old Andrew Burgher is one of those shining examples. Born with cerebral palsy, Andrew has little volitional control of his body and has difficulty speaking. But with the right tools, Andrew can move independently from one place to another and easily communicate with his family, friends and classmates. "When Andrew was three, we were referred to ATECH Services so Andrew could be evaluated for an augmentative communication device,” recalls Erika, Andrew’s mother. “ATECH Services speech and language pathologist Heather Gray came to the house with a number of different devices so we could determine what would work best.” From that day onward, says Heather, “Andrew just blew everyone away. He was a brilliant kid right from the start.” When choosing a communication device, as well as other adaptive equipment, ATECH consumers have the opportunity to give the new technology a trial run before purchase. “Two weeks into the trial, Andrew came into our office in Concord and with his device said, ‘Hello!’ then asked, ‘How are you?’ “How many three-year-olds do you know who ask that?” Heather marvels. “Once he had the device, we also learned what a great sense of humor he has,” Erika adds. Andrew uses an augmentative communication device called a Vantage which features a computer screen display that scans images, words and letters and is controlled by the user through a switch. Using this strategy, Andrew puts individual words together to make full sentences. The device then vocalizes with synthesized speech or can be customized to use recorded human speech. “After testing switches with Andrew’s head and feet, we discovered that he had the most control with his knees,” says Erika. With a switch controlled by his left knee, Andrew chooses concepts and words to communicate with those around him. According to Heather, he scans quickly — at four-tenths of a second — and is in the highest-level reading group in his kindergarten class. ATECH was called in to evaluate Andrew again about six months later — this time for a power wheelchair. “Previously we used a large stroller which made him dependent on others to move him from place to place. I had no idea he would be able to operate a wheelchair without using his hands,” recalls Erika. Again, ATECH set up a number of different possibilities to determine what would work best for him. And again, Andrew’s knees showed the most control. Now, while Andrew operates his communication device with his left knee, he drives his wheelchair with his right. “His personality really developed with the use of the chair,” says Erika. “He was able to assert his independence. Before he got the chair Andrew was more quiet and reserved. Now his personality is vibrant, and he can get away from his mother when he wants!” she jokes. Now that Andrew is mobile and able to communicate, ATECH continues to monitor his needs, including home and school computer access, as well as other accessibility requirementsin his classroom. And they keep the family up-to-date on technological advances. So far, they’ve looked into a foot-controlled joystick to drive his chair and are exploring an eye scan computer system. But the best thing of all, says Erika, is the joy Andrew gets from showing his cousins the latest computer games he’s found. “Independence, communication, playing games on the computer — it’s all fabulous!” ATECH Services: What We Do ATECH SERVICES offers creative solutions for everyone — from outfitting a two-year-old boy with a power wheelchair, to pressure mapping a mattress for a 97-year-old woman. If a person has difficulty completing a task because of a disability, the use of the right assistive technology solution can make all the difference. Evaluations by ATECH’s staff of speech-language pathologists and occupational and physical therapists can happen in the home, classroom, workplace or wherever a client experiences an accessibility challenge. Clinical staff and consumers are then supported by ATECH’s crack team of certified technicians. ATECH began solving accessibility problems in 1994, following the closing of the Laconia State School. Over the years it evolved from a Laconia-based program to a multi-site organization offering an array of assistive technology services and products to individuals, schools and organizations across the state. ATECH Services has helped over 20,000 New Hampshire residents with disabilities to reach their goals through assistive technology. ATECH joined Crotched Mountain’s family of services in 2007. ATECH’s four programs offer a comprehensive mix of exploration, consultation, training and equipment. New Hampshire Assistive Technology Evaluation and Consultation (NH-ATEC) provides evaluations, consultations and recommendations to individuals and organizationsin the areas of seating and mobility, communication, computer access, electronic aids, and home and worksite modifications implemented by a team of occupational therapists, physical therapists, speech-language pathologists and rehabilitation technicians. Approximately 1,650 services were provided last year. The Technology Exploration Center (TEC) offers cutting-edge product research and training, adaptive technical support and a technology loan program. The Refurbished Equipment Marketplace (REM) makes donated and refurbished durable medical equipment available for purchase at reduced cost. REM staff is certified to repair and service equipment according to manufacturers’ specifications and safety recommendations. Approximately 500 people were served last year. Vision and Hearing Services (VHS) coordinates several projects to assist students who are blind, visually impaired, deaf, hard of hearing or deaf-blind. Educational and consultation services are provided on a fee-for-service basis for schools serving students with these disabilities. Through the New Hampshire Department of Education (NH DOE) ATECH also: Loans large-print and Braille books and materials and related assistive technology to students, parents and educators; Provides information and referral services to schools and families for students with vision and/or hearing loss; Offers professional development resources related to best practices in vision education. For more information, go to www.crotchedmountain.org, click on Community and follow the link to ATECH Services, or call 1.800.932.5837. THE FACE OF PHILANTHROPY Ted Bacon: World Traveler, Philanthropist TED BACON settles back in his chair and smiles as he recounts a recent trip to France. “I was showing a group of Amherst College alumni around the little town at Arrowmanches Beach, where the US Navy had constructed an artificial port to supply the D-Day invasion,” he explains, “when someone must have overheard and realized that a World War II veteran was visiting.” A little later, the mayor came out of his office wearing a fancy sash, and to Ted’s complete surprise, presented him with two medals, honoring him as a returning US Navy war hero. The mayor made a little speech, capturing the attention of dozens of visiting schoolchildren, all of whom then wanted to have their photo taken with Bacon. Married 67 years to Sarah, his eyes light up when he speaks of his late wife. The Bacons became engaged while both were in the Navy, just 36 days after meeting in a cryptography class he was teaching. Among the first “in service” personnel to marry during the war, Sarah was required to have orders from the secretary of the Navy to be “out of uniform” and wear her wedding dress! Ted and Sarah traveled the world during and after the war, including 24 trips to Egypt, where Ted was a trustee at The American University in Cairo. Ted taught Urban and Regional Planning at UMass Amherst for 30 years while he and Sarah were raising three sons. “I loved the subject and the students,” he recalls. Ted remembers that his parents always gave modest amounts to several charities and as soon as he was able, he began his own personal philanthropy. Moving to nearby Peterboroughin 1997, he learned about Crotched Mountain and has been a generous supporter, making several major gifts including setting up a Crotched Mountain Charitable Gift Annuity. “You do good work,” he smiles. Ted should know, as he is a client of our Audiology Clinic. “And I certainly encourage others to support Crotched Mountain as well,” he adds. Nominated by Crotched Mountain Foundation and several other hospitals he supports, Ted was recently presented with the Distinguished Service to Philanthropy Award for 2010 by the New England Association of Healthcare Philanthropy at their annual luncheon. Today at 91, Ted enjoys living at the RiverMead retirement community in Peterborough, although he’s not home much. Earlier this year, he visited Australia and New Zealand, and he has just returned from London and Paris. “I’m never bored,” he admits. Last year on a Thanskgiving trip to Florida, he drove the length of the Keys. When he is home, Ted attends Crotched Mountain’s annual meeting and keeps up to date on our latest accomplishments. He has visited the wood chip plant and looks forward to walking the new accessible trails. But in the meantime, he has more traveling to do. “When I’m old,” he laughs, “I’ll visit eastern Canada and places closer to home.” For now he has his sights set on returning to China and Europe. For more information about the many ways you can support Crotched Mountain please contact Laura Rauscher, development officer, or Pat Whitney, director of annual giving, to explore the kind of gift that feels right for you at 603.547.3311 or info@crotchedmountain.org. BRIEFLY NOTED Meet the Grain Barrel Crew Most Tuesday mornings, visitors to Sunnyfield Farm are likely to see our lively crew, John, Andy, Harris and Chris, carrying buckets of grain from the main barn down to the chicken house. Through all kinds of weather, these intrepid students use teamwork to carry the grain supply for some 80 chickens. Each student has gained skills in staying on task and following directions while enhancing gross motor abilities. "IT" is a Beautiful Thing Kin Schilling, a good friend to Crotched Mountain School and former consultant to the Earth Connections class, was recognized as one of 25 New Hampshire people you need to know on New Hampshire Magazine’s It List. An artist and entrepreneur who has spearheaded numerous successful businesses in the area, she connected with CMS through her Cornucopia Project, which “teaches sustainable and nourishing life practices to children by connecting them to the land.” Kin worked with CMS students to create accessible garden beds on campus, and at the Norway Hill gardens in nearby Hancock. Tracking Changes TEACHER DONNA COLLINS’ fourth grade science class has been keeping an eye on the Dutton Brook Trail as part of a project to study changes in the landscape over time. The students chose five places along the trail to track over the year to understand how life adapts to the changing seasons. Students take pictures, make graphs and record changes at the five areas every other week through the fall, winter and spring months, and will document their findings in a Seasonal Changes Portfolio. WE’RE NOT IN GREENFIELD FOR NOTHIN’ Patients and residents at Crotched Mountain are more comfortable this winter, thanks to a new connection to our central biomass district heating system made possible by a $176,532 grant from the New Hampshire Public Utilities Commission’s Greenhouse Gas Emissions Reduction Fund (GGERF). The project allowed two of the larger buildings on campus to be connected to our central district heating plant that uses wood chips harvested from New Hampshire forests. Previously these buildings used a less efficient steam heating system powered by fossil fuels. CM projects an annual reduction of close to 25,000 gallons of oil use, and a corresponding emmission reduction of over 250 metric tons of carbon dioxide. FLYING HIGH Kites Over New England (KONE), a kite-flying enthusiast group and a perennial favorite at CM, hosted their indoor kiteflying competition in the CM gymnasium in November. After the official competition, CMS students had an opportunity to show their skills during an impromptu contest. Students True and Hannah won the top two spots. KONE has taken CM under its wing over the years, providing us with entertainment and excitement with activities like kite-making and indoor flying. KONE will return for the 2010 Fall Festival on Columbus Day weekend, and if the wind is right, over forty kites of every shape and size will soar overhead. HILLIARD SERIES Hearing Voices (Speaking in Tongues) April 22, 3:30-5pm Carter Hall at Crotched Mountain Crotched Mountain presents an award winning show about love and schizophrenia. Michael Mack was a little boy when his mother was first diagnosed with schizophrenia — becoming convinced that she was the Virgin Mary. One in every five families faces a major mental illness, and the stunning transformation of a loved one can strike a child mute. But Michael Mack has found his voice, and he shares it with others in his feature-length, solo play Hearing Voices (Speaking in Tongues). Over a decade in creation, Mack’s multi-character, one-man show is a lyric memoir of his mother’s odyssey through state hospitals, halfway houses, jails and homelessness, until she finds recovery through unexpected grace. Exploring the shadowy landscape between psychosis and religious illumination, Hearing Voices (Speaking in Tongues) is one family’s remarkable journey of deliverance. Mack has toured with the show nationwide and excerpts have been published in major publications. For more information, visit www.michaelmacklive.com In celebration of Poetry and Mental Health Months (April and May), Crotched Mountain is pleased to welcome Michael Mack on Thursday, April 22 with a Q&A after the show. The performance will be held in Carter Hall at Crotched Mountain. The performance is free and open to the public. It is sponsored by the Crotched Mountain Hilliard Series which honors Clint Hilliard, former head of the Speech and Language Department. Please RSVP to Joan Crooker by April 15 at 603.547.3311, ext 1481 or emailjoan.crooker@crotchedmountain.org. Horizons is published by The Office of Advancement Editor: Robin Boyd robin.boyd@crotchedmountain.org Crotched Mountain Foundation One Verney Drive Greenfield, NH 03047 Please write us at the above address if you wish to have your name removed from fund-raising requests supporting Crotched Mountain.