One in a Million Back to School It Makes a Village
Transcription
One in a Million Back to School It Makes a Village
amazingkids A publication of The Children’s Institute One in a Million How one amazing boy beat the odds Back to School No ordinary first day, no ordinary school It Makes a Village Building a great family one child at a time FALL 2010 amazingkids contents milesahead FALL2010 A publication of The Children’s Institute feature stories: A visitor recently saw the phrase we use to describe our organization — Amazing Kids. Amazing Place. — and wondered aloud whether it’s the kids that make the place amazing or vice versa. And you’ll meet a remarkable educator who recently retired from The Day School. Bill Bauer and his staff have shaped the school into an exceptionally childfocused place, and parents often tell us how much they appreciate seeing their children learn, have fun and thrive there. The answer is “both.” The children and young people we serve are indeed amazing. They face significant challenges with courage, strength and good humor. Those qualities inspire all of us who work here and we do everything in our power to help each child become all that he or she can be. In this issue, you’ll read about some of the ways in which that happens. 2 8 12 ONE IN A MILLION He’s an amazing kid who suffered a terrible one-in-a-million medical event. But, with the help of his family and a team of medical and rehabilitation professionals, 4-year-old Alex is bouncing back — and even playing sports. BACK TO SCHOOL From the minute the kids return to school after summer vacation, The Day School hums along, in some ways you might expect, and others that may surprise you. Learn about the school and a major transition that’s just happened. IT MAKES A VILLAGE In Lawrence County, a church speaker changed the direction of one couple’s lives. Since then, Nan and John Beachem have helped raise dozens of children, including some through Project STAR’s Medical Foster Care Program. 20 DONOR PROFILE 28 AMAZING WISH LIST 22 NEWS BRIEFS 30 DID YOU KNOW 24 COMMUNITY For example, you’ll encounter 4-year-old Alex Brown who, until recently, was a patient in our Hospital. We’re still helping Alex heal, and, for children, healing involves play. Our therapists incorporate that basic tenet of child development into the work they do every day. What does all of that add up to? Together, our amazing kids and excellent staff create a powerful synergy that makes The Children’s Institute a uniquely productive and joyful organization — and a truly amazing place. Sincerely, David K. Miles, MEd, MPM President and CEO You’ll learn about a terrific couple working with Project STAR. Some families are unable to help their children who struggle with significant medical issues, so our dedicated team of specialists finds open-hearted people like Nan and John Beachem to become foster, and sometimes adoptive, parents for those children. and more: 15 WAITING CHILDREN PROFILES 16 THERAPEUTIC GARDEN 19 BOARD OF DIRECTORS 26 COMMUNITY CALENDAR On the cover Alex Brown. 4, enjoys recreational therapy page 1 amazing kids magazine one in a million Four-year-old Alex Brown is a one-in-a-million kid — big brown eyes, an engaging grin, a quick mind and a delightful sense of humor. But he’s also one in a million in another way. Alex, his parents Amy and Eric and toddler sister Abby were living a happy, full life in their Cranberry Township home. Then, last October, Alex suffered a sudden, spontaneous bleed in his spine — a “cervical epidural hematoma of unknown origin.” It was, statistically, a one-in-a-million medical event, and it nearly cost Alex his life. Complications, including a spinal stroke, gave him only a 5 percent chance of survival. Emergency surgeries and 11 weeks in the ICU at Children’s Hospital of Pittsburgh of UPMC saved Alex, but the road was bumpy. Several times, he nearly died. page 3 amazing kids magazine beating the odds. When Alex was finally stable, his doctors recommended a transfer to The Hospital at The Children’s Institute. Upon arrival, Alex was still very ill. Breathing with a ventilator, fed through a gastric tube, unable to move his legs and with extreme weakness in his upper body, he required significant medical support as well as an intensive rehabilitation program. The Children’s Institute’s staff jumped into action on both fronts. to the valve by distracting him with his favorite games while the valve was in place. Alex has a terrific imagination, and the therapy team went wherever it took them. “Some days we were astronauts, some days we were chased by monsters,” says Tess de las Alas, MS, OTR/L, Alex’s primary occupational therapist. “What we do in our therapies can fit into any context that engages a child.” Alex’s dad, Eric, an 8th grade history teacher, says “All the therapists had great flexibility. During sessions, they’d interpret what he was thinking and feeling, and immediately adjust their approach. They had a lot of compassion, but they also pushed him to work hard.” The Children’s Institute’s “whole child” approach also considers psychosocial issues. Certified child life specialist Breinne Regan, MS, CCLS, created a “veterinary hospital” in which she and Alex “treated” toy Pediatric intensivist Dr. Howard Ferimer, whose specialty is treating inpatient children dealing with critical illness, began addressing Alex’s medical needs, which included respiratory support, pain control, electrolyte balance and nutrition. Pediatric rehabilitation medicine specialist Dr. Ewa Brandys led the intensive, multidisciplinary rehabilitation effort. Alex’s mom, Amy, recalls, “They involved us right away and let us help set goals. We wanted an aggressive program to help Alex get his life back on track, and that’s exactly what they did.” Alex’s program included several hours each day of physical, occupational, speech/language, child life and recreation therapies. He called them “classes.” Initial goals included building endurance and working on core strength to help with breathing and balance. Those achievements would pave the way for standing, walking and improved fine motor skills. Working with children requires a special approach. Alex’s primary physical therapist, Christy Dawes, DPT, NCS, ATC, says, “A child’s job is to play. So, for example, we don’t ask a young child to do leg lifts; we make up games that involve things like kicking a beanbag. Same activity, same results, but to the child it’s play.” In order to regain good function in both speaking and swallowing, Alex needed a “Passy-Muir valve” on the breathing tube in this throat. But, at first, the valve can be difficult to tolerate. Speech/language pathologist Becky Yarussi, MS, CCC-SLP, helped Alex acclimate amazing kids magazine page 4 page 5 amazing kids magazine “All the therapists had great flexibility. During sessions, they’d interpret what he was thinking and feeling, and immediately adjust their approach. They had a lot of compassion, but they also pushed him to work hard.” help him learn to deal with grass and sidewalks — and also just for fun. (Alex renamed recreational therapy “my fun class.”) Alex loves messy play! Melissa Fryman, CTRS, uses recreational therapy activities like this to help patients remember that even though they are in the hospital, they’re still just kids who need to have fun. animals with the IVs Alex occasionally needed, helping reduce his anxiety and regain a feeling of control. In between therapy sessions, there was lots of time in the playroom loaded with games and toys. For several months, the Brown family rebuilt their lives around Alex’s needs. During the week, Amy stayed with Alex, attending therapy sessions and helping him stay motivated. While he napped, she telecommuted to her job as a recruiter for Dick’s Sporting Goods. Eric continued to teach and cared for daughter Abby during the week, then stayed weekends with Alex while Amy was home with Abby. “These are fantastic, thoughtful parents,” says Dr. Brandys. Gradually, Alex was weaned from the ventilator except for naps and overnights. He became strong enough to sit, then progressed from a supportive stander to a special braces-and-walker combination that helped his brain and spine remember what walking felt like. A high-tech bike used electric stimulation to exercise muscles he couldn’t move himself. In between, he zoomed around the corridors of The Children’s Institute in his customized wheelchair. Therapeutic recreation specialist Melissa Fryman, CTRS, took him outdoors to amazing kids magazine page 6 During his four-month stay at The Children’s Institute, Alex’s sense of humor and quick wit emerged. When asked to name words starting with particular letters, his reply to “Z” was a huge grin and “Zamboni!” All the Browns are major Pittsburgh Penguins fans, and even at age 4, Alex knows the names and numbers of the players and is always happy to chat about the latest game results. Over time, he came to know more medical terms than any young child should have to, but he deals with them with a child’s charm. Talking about a “granuloma” inflammation he had, Alex says “granny-oma.” As the time to return home neared, a therapy team visited the family’s house to help the Browns plan accommodations for Alex. An outpatient physical and occupational therapy schedule at The Children’s Institute’s Wexford satellite was set up. (The Children’s Institute’s outpatient services are the only ones in the region accredited by the Commission on the Accreditation of Rehabilitation Facilities.) In-home nursing care was arranged because Alex still has medical needs, including part-time use of the ventilator and the feeding tube. Melissa had told Amy and Eric about Mighty Pens sled hockey and Miracle League baseball, full-fledged sports for people with disabilities, and the Browns immediately signed Alex up for both. He’s the youngest player on both teams. Alex is home now and continuing to make great progress. Amy says, “You get through something like this with faith and support from the people you love and from people like the team at The Children’s Institute. They were great. They saw what we see in Alex — a strong, brave kid who beats the odds.” ■ To learn more about the Spinal Cord Injury Rehabilitation Program, please contact Patrick Quirk at 412.420.2115 or pqu@the-institute.org. page 7 For information on making a gift in support of The Hospital at The Children’s Institute, please contact Michele Mehal at 412.420.2204 or mgi@the-institute.org. amazing kids magazine It’s Back to School Cheerful greetings. Big smiles. Colorful new outfits. It’s everything you’d expect from the first day of school. But look a little closer, and you’ll see this is no ordinary first day. Because this is no ordinary school. By 10 a.m., there’s none of the first-day confusion or disorder you might expect. As you walk around, all you see are kids, teachers and aides working together — productively, smoothly, even joyfully — as if they’ve been in session for days or even weeks. This is The Day School at The Children’s Institute, and before students came back, the staff worked long and hard to become familiar with each one’s abilities, challenges, needs, likes and dislikes. amazing kids magazine page 8 “We make the best use of the kids’ time here,” says Bill Bauer, MEd, CRC, who has just retired as Chief School Administrator (please see story on page 11). “We want them to be learning, growing and enjoying every minute they’re with us, so we do everything we can to make that happen.” The Day School offers its students everything you’d expect from any good school. page 9 amazing kids magazine A fond farewell The curricula — a combination of functional academics and life skills — and teaching strategies are carefully tailored to each student. meet that child’s needs. The districts are very cognizant of their responsibilities to the kids. They know what they can do, and they know what we can do.” Computers are readily available in each classroom, and sophisticated accessibility devices (such as switches and alternative keyboards) make the technology userfriendly. Funding is usually provided by a combination of support from the state and the student’s school district, which also provides transportation. There are spring formals, volunteer opportunities, student-created decorations in the hallways and even a school store staffed largely by students. But, additionally, The Day School, licensed by the Pennsylvania Bureau of Private Academic Schools, approved by the State’s Bureau of Special Education and accredited by the National Commission for the Accreditation of Special Education Services, offers everything students need to meet the challenges posed by significant disabilities. Most of the students have cerebral palsy and other neurological impairments, while some are severely affected by autism. Bill says, “The level of acuity has certainly risen over the years, and, today, our students are much more challenged. Many require tube feeding, many require complete personal care and many need assistive communications devices to be able to express themselves.” At The Day School, the staff-to-student ratio is exceptional — 3:8 in most classrooms, and, in the classrooms for students with autism, 3:6 — which allows for highly individualized care and teaching. Students who need physical, occupational, speech/ language and other therapies receive them regularly. The Day School’s staff includes expert therapists, and facilities include dedicated treatment areas. Social workers, nurses, psychological services, dietary experts and other supports are always available. “Our approach is transdisciplinary and completely childfocused,” says Bill. “We make sure that each student has absolutely everything he or she needs to achieve the greatest independence possible.” “I am so proud of what we do here.” ■ To learn more about The Day School, please contact Cheryl Fogarty, EdD at 412.420.2300 or cfo@the-institute.org. Students come from school districts across Southwestern Pennsylvania. Bill says, “A student is referred to us when a district can’t provide an appropriate program to amazing kids magazine page 10 For information on making a gift in support of The Day School at The Children’s Institute, please contact Michele Mehal at 412.420.2204 or mgi@the-institute.org. “Forty-one fabulous years, I was never bored for one minute, and I have a low boredom threshold!” Bill Bauer, who retired this summer as Chief School Administrator, smiles as he describes his tenure at The Day School. Bill began at The Day School as a teacher, and after just three years was appointed to head the school in 1968. There were only seven classrooms, and the only “enrichment” course was art. “So much was different, but what many people are surprised to hear is that we have always enrolled kids with autism. That’s not something new for us,” Bill says. Bill has spent the last 38 years shaping the school into an entity that’s respected across the country — and beyond. Bill and members of the staff are often invited to present at national and international conferences, and visitors from afar come to The Day School to see how its transdisciplinary approach helps kids achieve their greatest possible independence. “The administration here has always granted The Day School the honor of recognizing that we know what we’re doing,” Bill says. “We’ve been encouraged to implement best practices and to be wildly creative in our approach to working with these terrific kids.” Of what is Bill most proud? He responds instantly: “Two things. First, the staff — they’re superb. You won’t find their equal anywhere. Second, the fact that this is the most child-focused school I’ve ever seen. I’m a commissioner for the accrediting body for special education schools, and I’ve learned that nobody else centers everything on the kids the way we do.” Bill’s not retiring completely, he’ll continue his awardwinning work as a Carlow University adjunct faculty member. That work includes supervising student teachers in special education, and one of the worksites will be The Day School. President and CEO David Miles says, “Bill’s energy, intelligence and love and respect for the children, along with his discernment in selecting staff members, are legendary. We’ll miss his daily presence, but what he’s built is here to stay, and that’s good news for kids with special needs.” A welcoming hello Bill Bauer’s successor at The Day School is Cheryl Fogarty, EdD, formerly Director of the Allegheny Intermediate Unit’s Educational Services and Support Division. She’s not a stranger to The Day School because in 1980 Bill hired her as a special education teacher. She taught and then supervised at The Day School for 12 years. “I’m greatly looking forward to being back,” she says. “The Children’s Institute has always been a special place to work. There are high expectations of the staff and the support to meet those expectations.” Dr. Fogarty says her first priority will be to listen and learn, then make recommendations about how to move forward. Bill says, “As a teacher and administrator, Cheryl Fogarty has high standards and is wonderfully childfocused. I think she’ll be fabulous.” page 11 amazing kids magazine It Takes a Village There’s an old saying that “it takes a village to raise a child.” One Lawrence County couple has helped raise so many children that it could make a village. When Nan and John Beachem married in 1983, they didn’t plan on a village of kids. They started their own family, and by 1991, they had two daughters and a son. Then a speaker at their church described the need for temporary foster parents for newborn babies. “It sounded great, sitting and rocking a child I didn’t have to give birth to,” Nan recalls with a smile. For several years, the Beachems gave many infants a great start on life, then turned them over to joyful adoptive parents. Along the way, they had a fourth child of their own. Life was going as expected in the sprawling contemporary ranch in Portersville. Things changed in 1997 when a birth mother whose parental rights had been terminated asked them to adopt her infant daughter. They agreed, and Shaelyn joined the family as the first adoptive Beachem child. An enthusiastic athlete, Shaelyn has just entered 8th grade. As the years passed, the Beachems continued to foster infants, one of whom was Tessa, who came with what they were told was a cold. Sadly, it was soon rediagnosed amazing kids magazine page 12 as a fatal degenerative neurological illness caused by a missing enzyme. “WHEN A CHILD IS HELPLESS, YOU JUST DO IT” Tessa needed extensive care. Nan and John had no medical background — he supervises the installation of stone floors, and she’s a full-time mom who had worked as a design consultant — but training for foster parents is provided. Nan recalls, “If you had asked us, we’d have thought we couldn’t do it. But when a child is helpless, you just do it, and you do it with love.” Tessa, who the Beachems adopted shortly after her diagnosis, far outlived her life expectancy, but, sadly, succumbed to her illness at age 7. By that point, the Beachems knew that they were capable of caring for medically fragile children, so they turned to Project STAR because of its program in which resource families foster and, sometimes, adopt kids with significant medical needs. Many of the kids in the Medical Foster Care program are awaiting transplants at Children’s Hospital of Pittsburgh of UPMC. page 13 amazing kids magazine waitingchildrenprofiles Children shine brightest in families. Whether the goal is adoption or reunification with birth families, Project STAR does everything possible to place children with safe, nurturing, forever families. These children are just two of the many who are waiting for homes to call their own. Cecilia, 14, is the kind of young woman people describe as “awesome.” Once she gets to know someone, she can be delightfully talkative. She loves shopping and listening to music, and she’s an accomplished knitter. A 9th-grader, Cecilia excels in school and wants to become a veterinarian for house pets. Cecilia would do well in either a single-parent or two-parent family; she just wants to feel safe and loved. Kim Majors, manager of Project STAR’s Beaver County office, says, “Some care routines are complex, but excellent training is provided. What it takes is the willingness to learn. Medicaid covers medical costs, a stipend covers things like food and clothing and what these wonderful families provide are priceless time and love.” Through Project STAR, the Beachems continued to foster kids with medical issues. Dominick, who’s now 6 and recently adopted by the family, had severe seizures, which have resolved since his infancy. He still has a feeding tube, and has pervasive developmental disorder (PDD). Two other children who came to the Beachems through Project STAR are awaiting transplants. Now ages 4 and 3, they’re expected to be available for adoption soon, and the Beachems will become their parents. Both kids have complex medical routines — the 3 year old essentially has no digestive system at all, and the 4 year old requires IV fluids every night. Nurses help during most days, and Nan and John handle overnights. Danielle Sebbens, a nurse practitioner at Children’s Hospital of Pittsburgh of UPMC’s Intestinal Care and Rehabilitation Program, says, “These are caring people who do a wonderful job with the kids. And it’s a great family. All the kids love each other and their parents.” includes one birth child, two adopted children and three foster children. The household is calm, spotless and clearly happy. Medical supplies are neatly stored in the kids’ rooms, which are charmingly decorated. Nan greets visitors with a warm smile. “They have a wonderful, old-fashioned parenting style,” says Project STAR’s Kim Majors. “The kids all have age-appropriate responsibilities, and Nan and John move them toward healthy independence in an atmosphere of great support and love.” In all, the Beachems have helped raise 86 children, including many with difficult medical conditions. And they’re not done yet: while the Beachems aren’t planning further adoptions, they’ll continue fostering medically fragile children. Nan says, “People ask us how we do it, and we tell them there’s plenty of support — from Project STAR, from Children’s Hospital, from other families. You can do things you never dreamed you could, and it will be worth it.” Then she smiles and adds, “We never expected to care for so many kids. But God has plans, and we’re just along for the ride.” ■ FOSTER SON, BIG BROTHER Eighteen-year-old Joe, a high school senior, also is part of the family. Although legally an adult, Joe chose to stay in foster care through high school and asked Project STAR to place him with the Beachems. He’s a gentle big brother to the little kids. To learn more about the Medical Foster Care Program, please contact Cathy Pahel at 412.244.3056 or cpa@the-institute.org. Nan and John’s youngest birth child, Hunter, is 16 and still lives at home, so at the moment, the household amazing kids magazine page 14 For information on making a gift in support of Project STAR at The Children’s Institute, please contact Michele Mehal at 412.420.2204 or mgi@the-institute.org. SHELLY energetic and outgoing very creative likes football If you’d like to learn more, please contact Russ McCurdy with Project STAR at 412.417.7136 or rum@the-institute.org. Born 3/25/96 PAE #C-51AT34 Shelly is a lovely, lively 16 year old, energetic and outgoing. Just starting 10th grade, she enjoys school and is making good academic progress. Favorite pastimes include writing poetry, drawing, doing crafts and reading, especially the Twilight series and Harry Potter. Shelly is very eager to have a permanent home with a forever family who will love and comfort her. All family types will be considered. Cecilia is legally free for adoption. All families will be considered. CECILIA 16 years old 14 years old loves music and shopping If you’d like to learn more, please contact Debra Henry with Project STAR at 724.775.0209 or dhe@the-institute.org. excellent student Born 7/30/94 PAE #C-4200003 talented knitter Shelly is not yet legally free for adoption. For more information about Shelly and Cecilia, visit www.amazingkids.org. Click on Project STAR, then on Family Placement Services. Scroll to Kids Waiting and click. SPOTLIGHT ON MEDICAL FOSTER CARE Medical foster care is a specialty of Project STAR at The Children’s Institute, which contracts with public child welfare systems locally, as well as in Philadelphia, Texas and West Virginia, to place medically fragile children in Western Pennsylvania homes for fostering and, sometimes, adoption by loving families. fully understand that the children have significant medical issues that may involve multiple trips to the hospital and doctors’ offices, both planned and unplanned, as well as medications and routines that can be complex, and they are willing to do whatever it takes for the child.” “These families are exceptional,” says Cathy Pahel, Project STAR’s Manager of Placement Services. “They “We are always looking for additional resource families willing to provide loving homes for these children.” page 15 amazing kids magazine The Nimick Family Therapeutic Garden About to Take Root - and Bloom After extensive planning, The Children’s Institute’s new Nimick Family Therapeutic Garden is becoming a delightful reality that will soon benefit patients, families, staff and neighbors. The Nimick Family Therapeutic Garden will transform the Shady Avenue façade of The Children’s Institute’s Squirrel Hill campus. Ground was broken in late spring for the 10,000-squarefoot garden which will span the entire Shady Avenue façade of The Children’s Institute’s main building. Detailed planning occupied much of the summer, and now the work is underway with a light up event planned for winter and a dedication in the spring. Full planting will take place this autumn and next spring when the garden will begin to burst with color and scent. As part of the planning process, Pittsburgh’s New Dawn Garden Design, a respected local firm experienced in designing therapeutic gardens, did intensive research that included focus groups with patients, families and staff. New Dawn founder and CEO Christine Astorino says, “Many of the garden’s features, including the treehouse, were requested by young patients. And, of course, the garden’s whole design emphasizes accessibility. For example, the fountain will be activated by putting pressure on an in-ground sensor that can be done by rolling a wheelchair over it. And the children’s planting beds will be raised above ground level so they can be reached from wheelchairs and walkers.” amazing kids magazine The garden’s elements are linked by a meandering path wide enough for two wheelchairs to pass and smooth enough for IV poles to travel. The path will feature ornamental tiles acknowledging generous donors, as will the bricks in several patio-like areas. Sunflowers, in design elements and in planting beds, are a major theme of the garden. Cheerful and hopeful, the sunflower is the signature flower of The Children’s Institute. It’s also mentioned in a famous inspirational quote from Helen Keller: “Keep your face to the sunshine and you cannot see the shadow. It’s what the sunflowers do.” Special evening lighting will make the garden safe and inviting after the sun sets. Even in a place as warm and welcoming as The Children’s Institute, having an ill or injured child is one of life’s most stressful events, and after young patients are tucked in for the night, their parents can relax and restore their spirits in the garden. The garden will offer additional benefits. In therapy sessions, the garden can, for example, help patients develop strength and balance as they move around, or fine motor skills as they work with the plants. For The Day School, the page 16 “Keep your face to the sunshine and you cannot see the shadow. It’s what the sunflowers do.” -Helen Keller garden will be a venue for hands-on learning about science, nutrition and even entrepreneurship. The school’s students are famous for their fundraising sales, and they might decide to run mini-farmers’ markets. Neighbors will be invited to enjoy the garden, just as they do The Children’s Institute’s welcoming playground. David Miles, President and CEO of The Children’s Institute, says, “The Nimick Family Therapeutic Garden is an extraordinary addition to our facility, and all of us greatly look forward to seeing our amazing kids and families benefiting from it.” NIMICK FAMILY HONORS PARENTS WITH LEAD GIFT FOR GARDEN The million-dollar gift that is making the new therapeutic garden possible was given by the Nimick Forbesway Foundation, whose trustees are Charles L.H. Nimick of Great Falls, VA; Victoria Nimick Enright of Madison, WI; and Kit Nimick Carrasco of Aspinwall. The three are the adult children of the late Florence and Thomas Nimick. Florence Lockhart Nimick was a longtime member and two-time president of The Children’s Institute’s Board of Directors. Her husband, Thomas Howe Nimick Jr., was a member of the Men’s Advisory Board and later a member of the Board of Directors. page 17 amazing kids magazine boardofdirectors Kit Nimick Carrasco says, “The Children’s Institute was our parents’ mutual interest and passion, and therefore very much a part of our lives as we grew up. I remember going there often with my mother for her volunteer work and saying hello to the kids we’d see. Later, my sister and I volunteered at the summer camp — and still later, I often took my own kids to the playground. So helping to make the therapeutic garden possible is a wonderful way to honor our parents and do something good for patients and families.” ■ A special thank you to Christine Astorino of New Dawn Garden Design for the garden renderings. Nimick Forbesway Foundation trustees Kit Nimick Carrasco and Victoria Nimick Enright are joined by Kit’s daughter, Natalie Austin, and Jack Kessler, Esq., Secretary-Treasurer of the Foundation. To learn more about The Nimick Family Therapeutic Garden, please contact The Children’s Institute at 412.420.2400 or visit www.amazingkids.org. For information on making a gift in support of The Nimick Family Therapeutic Garden at The Children’s Institute, please contact Helene Conway-Long at 412.420.2201 or hcl@the-institute.org. Front ro w, left to right: John K. Thornburgh, vice chair; Maureen B. Cohon, secretary; Joseph E. Imbriglia, MD, chair; Susan Baker Shipley, treasurer; Michael J. Hannon, vice chair; Back row, left to right: F. Brooks Robinson Jr.; Merrill P. Stabile; Ellen P. Kessler; Nita Wadhwani; N. John Cooper, DPhil; B. Gordon Nelson III; David K. Miles, president and chief executive officer; Anne V. Lewis; Allan MacDougall III; Cynthia D. Sharpira; Ann M. McGuinn; James W. Marczak; Absent from photo: Patricia Suzanne Chesko; John R. Denny; Carolyn D. Duronio; J. Keefe Ellis Jr.; Lisa C. Fagan; Pamela W. Golden; Pradeep K. Khosla, PhD; Michele M. McKenney; Morgan K. O’Brien. (2009-2010 active board) The Children’s Institute is supported, inspired and instructed in many different ways by volunteer YOU CAN BE A PART OF OUR GARDEN TOO It’s not too late to be involved in this wonderful addition to The Children’s Institute — and the community! The generous gift from the Nimick family is turning the garden plans into reality, but many beautiful features and amenities are still available to be named in honor or memory of loved ones. They include: Patio Area Bricks Additionally, naming opportunities are available for larger features such as the enchanting accessible treehouse, children’s planting gardens and charming sunflower pavilion. Of course, support at any level is most welcome and will help maintain the garden for patients and families for generations to come. ■ $250 Dedicate a garden walkway or patio-area brick with your name or the name of a loved one. Decorative Paver Tiles $2,500 Add your name or the name of a loved one to our meandering walkway with a beautiful decorative tile. Comfortable Benches $5,000 Any Amount You can help keep the garden beautiful and flourishing with your gift to support for care and maintenance. amazing kids magazine page 18 THE CHILDREN’S INSTITUTE BOARD OF DIRECTORS 2010-2011 CHAIR Joseph E. Imbriglia, MD VICE CHAIRS Michael J. Hannon John K. Thornburgh SECRETARY Lisa C. Fagan TREASURER Michele M. McKenney PRESIDENT AND CHIEF EXECUTIVE OFFICER David K. Miles Engraved with your name or the name of a loved one, these benches provide the perfect place to relax and enjoy the garden. Garden Care and Maintenance leaders who donate their time, expertise and personal resources. Patio-Area P ti A Brick B i and Paver Tile DIRECTORS Patricia Suzanne Chesko N. John Cooper, DPhil John R. Denny Carolyn D. Duronio J. Keefe Ellis Jr. Pamela W. Golden Ellen P. Kessler Pradeep K. Khosla, PhD Allan MacDougall III James W. Marczak Ann M. McGuinn B. Gordon Nelson III Morgan K. O’Brien F. Brooks Robinson Jr. Cynthia D. Shapira Susan Baker Shipley Merrill P. Stabile Nita Wadhwani ASSOCIATE MEMBERS Paulette P. Apostolides Nancy M. Armstrong Thomas J. Bachman Burnett G. Bartley Jr. Mary Florence Brown Mrs. Davis C. Burroughs Jr. Henry C. Cohen Sandy W. Côté Ann H. Cutter George M. Egan Sheila C. Fine page 19 Henry J. Gailliot Gus P. Georgiadis Lillian H. Goldsmith George C. Greer Paul A. Heasley Audrey H. Hilliard Joan M. Kaplan Marcia L. Keehn Eileen L. Lane Barbara K. Nelson Maureen S. O’Brien Judy G. Papernick James S. Pasman Jr. Ruth S. Perfido Patricia R. Rooney Jean McD. Scott Lea H. Simonds Ann E. Sullivan Harry A. Thompson II Ginny Thornburgh Jamee W. Todd James W. Ummer Farley W. Whetzel Susan C. Williams Margot B. Woodwell amazing kids magazine Meet an 8-Year-Old Philanthropist donorprofile A s Vivaldi’s lovely notes float in the sunshine, passers-by are enchanted by the young violinist playing on the busy sidewalk. She is Victoria Fusco of North Carolina. She is exceptionally talented, and at age 8, she is one of The Children’s Institute of Pittsburgh’s newest – and possibly youngest – donors. he story begins when 16-year-old Phillip Fusco II, Victoria’s brother, came to The Children’s Institute for treatment of Prader-Willi Syndrome, a rare genetic disorder whose symptoms can include food obsession, extreme obesity, low muscle tone and emotional and behavioral issues. Untreated, the syndrome can be fatal. The Children’s Institute has one of the few inpatient programs in the world. Angela, came to visit their son and work with the staff so they could continue Phillip’s progress at home. For Phillip, early diagnosis plus excellent medical care and family support had helped mitigate some symptoms. But his hunger is extreme enough that the family keeps food locked away, and he has some significant behavioral issues. Meanwhile, young Victoria decided to do something special for the place that was helping Phillip, her big brother and hero. Since age 4, Victoria has been studying violin with the Suzuki method, and it is clear that she is gifted. T Then, a longtime orthopedic issue flared, and Phillip went back to North Carolina for surgery. Says his dad, “It was a very difficult time. He had to be off his meds and surgery is never easy, but as soon as possible, he returned to continue his treatment.” At The Children’s Institute, Phillip’s inpatient stay was productive with medically managed exercise, medications, a diet program and psychotherapy. His parents, Phillip and Her parents helped her apply to a program to enliven the University of North Carolina’s campus with street arts. UNC loved her audition and invited her to play. They provided a sign, an honorarium and permission to accept tips. Victoria’s parents provided transportation and supervision. Victoria immediately decided that half of whatever she earned would be donated in support of the Prader-Willi Syndrome Program. The first time she played, she earned $168, and soon a cashier’s check for $84 arrived at The Children’s Institute. “Victoria reminds us that there’s no age requirement on philanthropy, and we are very grateful for her generosity.” “It was an extraordinary gift,” says Helene ConwayLong, Vice President of Institutional Advancement. “Victoria reminds us that there’s no age requirement on philanthropy, and we are very grateful for her generosity.” Phillip completed his inpatient stay and is now continuing his treatment program at home. Teachers come from the local school district, and Phillip and mom Angela work on his 11th-grade lessons. Victoria wants to play at UNC again this summer, and she definitely plans to continue contributing to The Children’s Institute. Dad Phillip says, “We are so pleased that she’s decided to use her musical gift this way. It really makes us proud.” ■ Victoria F Fusco amazing kids magazine page 20 For information on making a gift in support of The Children’s Institute, please contact Michele Mehal at 412.420.2204 or mgi@the-institute.org. page 21 amazing kids magazine newsbriefs newsbriefs LOSE THE TRAINING WHEELS™ SOME AMAZING IDEAS BECOME REALITY Learning how to ride a bike has been a rite of passage for children for generations and remains one today. At the third annual Amazing Bike Camp hosted by The Children’s Institute in conjunction with Lose the Training Wheels™, children with special needs from the greater Pittsburgh area got to do just that. What would you do with $5,000 at work? Last spring, employees at The Children’s Institute were invited to submit proposals on how they would spend $5,000 that would be raised at an event. Three staff members were chosen from 26 submissions to deliver three-minute pitches to guests at a benefit dinner hosted by Casbah Mediterranean Kitchen & Wine Bar. Guests then voted to decide how the funds raised that night would be spent. Jennifer Nasser, permanency specialist at Project STAR, pitched “Starting Fresh Leads to Success,” providing clothing, shoes, haircuts and backpacks filled with school supplies for children to begin the school year. Stacy Ulrich, special education teacher in The Day School, proposed a live-feed video camera system that could be used in the Sheila and Milton Fine Classrooms for Students with Autism, helping teachers to identify what classroom conditions cause certain behaviors. Staff and proposal winners Jennifer Nasser, Stacy Ulrich and Christy Dawes, DPT, NCS, ATC, “rocked” the Casbah and received full funding for their amazing ideas. Donations and pledges totaled $15,000 that night, fully funding all three projects. “It was an amazing evening,” said Helene Conway-Long, Vice President of Institutional Advancement. “We’re so grateful to have generous friends who believe not only in The Children’s Institute, but the wonderful ideas that our staff members have to help our kids reach their fullest potential.” Christy Dawes, DPT, NCS, ATC, inpatient physical therapy coordinator in The Hospital, pitched her idea for an adapted paddling program, allowing young people with disabilities to learn the water skills necessary to participate in a life-long activity. To find out how you can make an impact on our amazing kids by funding a project from the remaining proposals, please contact Michele Mehal at 412.420.2204 or mgi@the-institute.org. This year’s camp was held from Monday, June 14 through Friday, June 18 at the Iceoplex at Southpointe in Canonsburg, PA. With the aid of specially trained instructors and help from more than 70 volunteers, each camper rode modified bikes with rollers rather than wheels. Through the week, as riding ability progressed, so did the tapered ends of the rollers, eventually leading to nothing more than a conventional two-wheel bicycle. “This camp gives children with special needs a unique opportunity to learn a skill using adapted bikes and progressing to regular two-wheel bikes,” notes Jane Keim, Vice President of Operations at The Children’s Institute. “Watching them progress as the week continues never fails to amaze me.” By the end of the week, 84 percent of campers who attended the Amazing Bike Camp were able to ride conventional bikes on their own. But what good does knowing how to ride a bike do without having a bike to ride? GlaxoSmithKline Consumer Healthcare, the event sponsor, addressed that issue by donating a brand new bicycle to each child at the end of camp. Malesia Dunn, Director of Communications for North America at GlaxoSmithKline Consumer Healthcare, says the camp is a perfect match for the company. “We are committed to sponsoring programs that will enrich people’s lives, and this program meets that goal. We look forward to continuing our partnership with The Children’s Institute for the 2011 program and hope, together, we can reach more children and be a part of their dream of independently riding a bike.” Many thanks to all those who were instrumental in putting together the Amazing Bike Camp this year. Information on the 2011 camp will be available in the spring. MAKING THE HOLIDAYS BRIGHT ONE SWEET GESTURE When a child is alone in a residential treatment facility or part of a family that is struggling, the holidays can be a sad or disappointing time. Based in Pittsburgh’s South Side, Edward Marc is a premier confectioner, and your purchase of a gift from the company is also a wonderful gift to the amazing kids and families served by The Children’s Institute. Project STAR at The Children’s Institute holds the Annual Holiday Gift Drive to give caring people the opportunity to transform these children’s holidays. Last year, a total of 48 generous individual and group donors made the holidays amazing for 126 kids. Preparations are already underway for this year’s gift drive. Want to make a gesture that is doubly sweet? Buy chocolates from Edward Marc Chocolatier online (www.edwardmarc.com) to give as gifts this holiday season and The Children’s Institute will receive 20 percent of the sale. All you have to do is enter promotional code CI09 when finalizing your online or phone purchase. Order by December 16 to ensure holiday delivery. amazing kids magazine page 22 page 23 To find out how you can make the holidays brighter for some amazing kids, please contact Rachel Marx at 412.420.3051 or rma@the-institute.org. amazing kids magazine community Camp Success At The Children’s Institute, we pride ourselves on being an active presence in the community. Camp Success is just one of the many ways our reach of service extends beyond the four walls of our buildings. CAMP SUCCESS When summer strikes and other kids jet off to summer camps and vacations, the families of children with special needs face a dilemma — where can my child go to enjoy the same summer activities as his or her peers? The answer is Camp Success at The Children’s Institute. For more than a decade, Camp Success has been available for low-income families and families with children with special needs and their siblings. The camp provides a place for children from the community who wouldn’t normally have the opportunity to go to summer camp to laugh, play and enjoy summertime activities with other children at no cost to their families. Through Camp Success, children with special needs are given the opportunity to experience this summer tradition alongside their typically developing siblings, an experience not found at many other camps. Kim Moran has been sending her son Dominick, 9, to Camp Success for the past three years and is thrilled with how much he’s gained from his experience. This year, Camp Success ran two sessions, from June 21–July 9 and July 26–August 6 for 60 kids between age 6 and 12. Campers were treated with trips to the Pittsburgh Zoo and PPG Aquarium and a Just Ducky Tour of the city, as well as visits from The Children’s Museum, Roxy the Therapy Dog and everyday activities. The children were also introduced to different character education themes each day, such as honesty, trustworthiness and friendship, which the games and activities centered around. It’s all part of The Children’s Institute’s efforts to make sure every child in our community has the opportunity to have an amazing summer. ■ To learn more about Camp Success, please contact Amy Haid at 412.420.2316 or aeh@the-institute.org. “Since coming here, Dominick has matured a lot and his relationships with his peers have gotten a lot better,” Kim said. “He’s learned a lot about how to be kind to his friends and taking turns. He loves swimming and he loves the field trips. We love it there.” amazing kids magazine page 24 For information on making a gift in support of Camp Success at The Children’s Institute, please contact Michele Mehal at 412.420.2204 or mgi@the-institute.org. page 25 amazing kids magazine community calendar September October Monday, September 6 Saturday, October 2 10:00 a.m.–4:30 p.m. Labor Day – NO SCHOOL for students of The Day School 13th Annual Fall Harvest Day There’s fun for the whole family with hayrides, music, dancing, games and more. Project STAR families are invited to attend at no cost. RSVP to Rachel Marx at 412.244.3051 or rma@the-institute.org by Friday, September 24. Location: Hartwood Acres, Pittsburgh Wednesday, September 8 7:30–8:00 a.m. – Registration/Refreshments 8:00–9:00 a.m. – Speaker Grand Rounds “Service Satisfaction and FamilyCentered Care Study Outcome” Presented by Jennifer Benger, PsyD, Director of Psychology, The Children’s Institute; Joyce Salls, OTD, Assistant Professor and Director of Occupational Therapy, Chatham University; Joseph Shriber, PT, PhD, PCS, Associate Professor of Physical Therapy, Chatham University. Continuing Medical Education (CME) credits available. No registration required. For more information, call 412.420.2270. Location: The Children’s Institute, 1405 Shady Avenue, Pittsburgh Monday, October 4 6:30–8:30 p.m. Adoption, Foster Care and Respite Care Information Session* Location: The Children’s Institute, 1405 Shady Avenue, Pittsburgh Monday, October 11 Columbus Day – NO SCHOOL for students of The Day School Monday, September 13 6:30–8:30 p.m. Monday, October 11 6:30–8:30 p.m. Adoption, Foster Care and Respite Care Information Session* Location: The Children’s Institute, 1405 Shady Avenue, Pittsburgh Adoption, Foster Care and Respite Care Information Session* Location: Project STAR, 1598 Virginia Avenue, Monaca Monday, September 20 6:30–8:30 p.m. Wednesday, October 13 7:30–8:00 a.m. – Registration/Refreshments 8:00–9:00 a.m. – Speaker Adoption, Foster Care and Respite Care Information Session* Location: Project STAR, 1598 Virginia Avenue, Monaca Thursday, September 23 In-Service Day – NO SCHOOL for students of The Day School Thursday, September 23 6:30–8:30 p.m. The Day School Open House for parents and guardians Location: The Children’s Institute, 1405 Shady Avenue, Pittsburgh amazing kids magazine Grand Rounds “Evidence-Based Practice (EBP) As It Applies to Supervision” Presented by Cheryl Messick, PhD, CCC-SLP, Associate Professor of Communication Science & Disorders and Director of Clinical Education of Communication Science & Disorders at The University of Pittsburgh School of Health and Rehabilitation Sciences. Continuing Medical Education (CME) credits available. No registration required. For more information, call 412.420.2270. Location: The Children’s Institute, 1405 Shady Avenue, Pittsburgh page 26 Monday, October 18 In-Service Day – NO SCHOOL for students of The Day School November 25 – November 29 Thanksgiving Break – NO SCHOOL for students of The Day School November December Monday, November 1 6:30–8:30 p.m. Monday, December 6 6:30–8:30 p.m. Adoption, Foster Care and Respite Care Information Session* Location: The Children’s Institute, 1405 Shady Avenue, Pittsburgh Adoption, Foster Care and Respite Care Information Session* Location: The Children’s Institute, 1405 Shady Avenue, Pittsburgh Monday, November 8 6:30–8:30 p.m. Wednesday, December 8 7:30–8:00 a.m. – Registration/Refreshments 8:00–9:00 a.m. – Speaker Adoption, Foster Care and Respite Care Information Session* Location: Project STAR, 1598 Virginia Avenue, Monaca Wednesday, November 10 7:30–8:00 a.m. – Registration/Refreshments 8:00–9:00 a.m. – Speaker Grand Rounds “TBD” Presented by TBD. Continuing Medical Education (CME) credits available. No registration required. For more information, call 412.420.2270. Location: The Children’s Institute, 1405 Shady Avenue, Pittsburgh Thursday, November 11 Veterans Day – NO SCHOOL for students of The Day School November 20 – November 21 8:00 a.m.–5:00 p.m. Two-day course: Neuro-Developmental TreatmentBased Therapeutic Aquatics for Pediatrics Presented by Jane L. Styer-Acevedo, PT, C/NDT, senior adjunct faculty, Arcadia University. This course is designed to train physical therapists and occupational therapists on treatment techniques for use in the pool. For more information, call 410.583.2490 or 1.888.613.2275. Location: The Children’s Institute, 1405 Shady Avenue, Pittsburgh Grand Rounds “TBD” Presented by TBD. Continuing Medical Education (CME) credits available. No registration required. For more information, call 412.420.2270. Location: The Children’s Institute, 1405 Shady Avenue, Pittsburgh Monday, December 13 6:30–8:30 p.m. Adoption, Foster Care and Respite Care Information Session* Location: Project STAR, 1598 Virginia Avenue, Monaca December 23 – January 2 Winter Break – NO SCHOOL for students of The Day School (students return January 3) *Project STAR information meetings are a free opportunity to learn more about adoption, foster care and providing short-term respite care. Orientations also are available by private appointment. To RSVP for a meeting or arrange a private orientation, contact Dori Williams at 412.244.3048 or dwi@the-institute.org. page 27 amazing kids magazine MISSION The Children’s Institute is an independent, licensed nonprofit organization located in the Squirrel Hill section of Pittsburgh that is dedicated to promoting the well-being of children, young people and their families and to providing services that meet their special needs. making wishes come true The Children’s Institute was designed specifically as a rehabilitation facility, and its administration and staff are committed to increasing accessibility for all persons. If you have accessibility concerns, please call The Children’s Institute at 412.420.2485. You can have an amazing effect on the lives of children with special needs by helping to purchase vital equipment. The Children’s Institute’s Amazing Wish List includes small to moderate requests that can be fulfilled with a single gift ranging from $100 to $5,000. Your donation will go SERVICE toward the Amazing Wish List item of your choice, and as a donor, you will be listed in our annual The Children’s Institute of Pittsburgh does not exclude, deny benefits to, or otherwise discriminate against any person on the grounds of race, color, nation of origin, religious creed, disability, ancestry, sex, age or sexual orientation in employment or in admission to, participation in or receipt of the services and benefits of any of its programs and activities, whether carried out by The Children’s Institute of Pittsburgh directly or through a contractor or any other entity whom The Children’s Institute of Pittsburgh arranges to carry out its programs and activities. report with the wish you fulfilled.* Tidal Wave® 615 Capnograph and Accessories Common Sense Parenting® Kit When a child has issues with breathing, measuring levels of carbon dioxide in his or her lungs is crucial. If this wish is granted for The Hospital, caregivers will be able to use this tool to better assess the pulmonary status of patients as they are weaned from ventilators or when they are sleeping. The capnograph also will aid in diagnosing underlying problems in an emergency and may prevent the need for ordering costly sleep studies. Cost of wish: $4,000; quantity needed: 1 SpringBoard Lite® Communication Device Many children who come to The Hospital at The Children’s Institute have trouble communicating verbally. Communication devices like SpringBoard Lite ® help these children by speaking for them, stringing words together and enabling them with the ability to express their needs and “talk” with their family, peers and community. Cost of wish: $2,400; quantity needed: 4 Project STAR’s Intensive Family Support Services coordinators help to strengthen the ability of families to care for their children through preventative services and parent education. By attending parenting classes, families learn how to effectively manage their families, deal with crises that may arise and improve parent-child relationships. Materials for this instruction include parenting DVDs, books and training kits for parents and educators. This wish will provide 20 classes. Cost of wish: $2,250; quantity needed: 1 kit CatEye Recumbent GameBike Pro® Riding a bike is fun. But when you have to do it for therapy, it can feel tedious. Having equipment designed with a little extra fun built in helps to make therapy at The Hospital less mundane. The CatEye Recumbent GameBike Pro® is an exercise bike system that encourages exercise through age-appropriate video games powered by bicycling. This motivates patients to work harder to win the game and achieve their therapy goals. Cost of wish: $2,000; quantity needed: 1 This policy statement is in accordance with the provision of Title VI of the Civil Rights Act of 1964, Section 504 of the Rehabilitation Act of 1973, the Age Discrimination Act of 1975, the Americans with Disabilities Act of 1990, Regulations of the U.S. Department of Health and Human Services issued pursuant to the acts, Title 45 Code of Federal Regulations Part 80, 84, 91 and other applicable Federal, State, and Local Laws and Regulations. CREDITS David K. Miles, MEd, MPM President and CEO 412.420.2398 dmi@the-institute.org Helene Conway-Long, MBA, CFRE Vice President, Institutional Advancement 412.420.2201 hcl@the-institute.org Roya Kousari, MAM Marketing and Communications Director 412.420.2202 rko@the-institute.org Learn more about additional wishes, visit www.amazingkids.org/wishlist. *If the final cost of an item is less than the amount contributed, any remaining funds will be dedicated to complementary needs or, if not possible, released into the general fund. For more information about donating funds for the purchase of an item(s) from the Amazing Wish List, please contact Michele Mehal at 412.420.2204 or mgi@the-institute.org. amazing kids magazine page 28 For more information about this policy, please contact Administration at 412.420.2400. For more information about The Children’s Institute, please call 412.420.2400 or log on to www.amazingkids.org. For TDD use, contact us through the Pennsylvania Relay Service. Voice: 1.800.654.5988 TDD: 1.800.654.5984. Writing Cosgrove Communications, LLC Design Engauge The official registration and financial information of The Children’s Institute may be obtained from the Pennsylvania Department of State by calling toll free within Pennsylvania, 1.800.732.0999. Registration does not imply endorsement. The Children’s Institute is a 501 (c)(3) nonprofit organization, contributions to which are tax deductible to the fullest extent permitted by law. Photography Josh Franzos Harry Giglio page 29 amazing kids magazine NON-PROFIT ORG. U.S. POSTAGE PAID PITTSBURGH, PA PERMIT NO. 748 1405 Shady Avenue Pittsburgh, Pennsylvania 15217-1350 If you would like to be added or removed from our mailing list, please call 412.420.2203 or visit our Website at www.amazingkids.org/contact. When you ask to be removed from our mailing list, The Children’s Institute will make a reasonable effort to ensure you are not contacted again. The Children’s Institute does not sell, trade or forward mailing lists. Visit our Website at www.amazingkids.org. Please recycle this publication when finished. didyouknow? W d! e v o r p p A e’re EI TC suppo nation to rt Kid s on the B lock orate tax ania corp lv sy n n e P get t op s a nd ts brough This mea id s worksh Credit gif K x g Ta n zi e a m o Am tional Inc n ce s a n d nts in five ar, Educa e performa y l o o h K-8 stude 0 sc 0 0 1 ,3 0 5 y -2 rl 9 ea 20 0 ming to n uring the r program credits! D ss e n ote bette re a elp prom ility aw h b a ld is u d o c te ropria nation ing . Your do age -app ide learn l districts o o h and prov sc rs ia e n e a p lv ir e y th Pennsy make an l need s b Western h specia rricula. 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