Winter Outing 2007 - Helping Hands Foundation
Transcription
Winter Outing 2007 - Helping Hands Foundation
Helping Hands Foundation Newsletter A support group for families of children with upper limb differences Spring 2007 Winter Outing 2007 Reserve your spot Today! 2007 Summer Outing July 15, 2007 Mass. Hospital School (Canton) 2007 Soccer Clinic July 16, 2007 Gillette Stadium (Foxboro) Items in this Edition : Winter Outing 2007 Summer Camp Activities Looking Back in Time: Part 4 “Little Fins” Support Group Saving Summer—Mary Leighton Giving the Gift of Self Esteem HHF Star is Born Rizzo Golfs at First Swing First Swing Clinics What an event! All of our wonderful families had a superb time this year with many added activities, entertainment and speakers. We started off our weekend with a new “meet the board” gathering for parents. Many thanks to our friendly board members who attended this event: Bill Binnette, Chris & Owen Boyd, Peggy Ganim, Nancy Soucy, Rob & Beth Morley and Patti Garofalo. Many parents stopped by to socialize and get to know those who help keep things running within our organization. We hope to increase parent and teen participation within our group by exposing our members to the awesome work our foundation offers to so many. On Saturday morning, we were all treated to a presentation by professional golfer, Michael Gibson. As a teenager, Michael lost his left arm above the elbow in a boating accident. However, being an avid athlete, he did not let this tragedy stop him from exploring new activities…one of which was golf. He was soon hooked and before long became a Certified Custom Fitting Instructor helping people of all ages and abilities learn how to improve their golf swing. Some of his clients include people recovering from strokes, polio and other developmental disorders like Downs Syndrome and CP as well as fellow amputees. We are very grateful to Michael for sharing his story and exploring the world of golf with our HHF kids at their youth meeting and luncheon. We hope he becomes a regular participant at our outings. Michael Gibson can be reached at Harmon Golf, 168 Concord Street, Rockland, MA 02370; 806-942-7666. Much thanks to his wonderful assistant, Ashley Parsons ([email protected]) for helping to coordinate our day with this special guest! (Continued on page 2) Winter Outing 2007 (Continued from page 1) Throughout the weekend, we had several other special guests join us. Eamon Joyce, a licensed mass a g e therapist and amputee, donated his valua b l e time to s h o w HH children the m a n y benefits of massage therapy on overworked limbs and joints. Thanks to Eamon and his wife, Nancy, and son for joining us. Eamon can be reached at the Winchester Hospital in Woburn MA or 781-756-4700. Also, Maggie Doben joined us (with camera in hand) to learn more about our wonderful children and their families for her upcoming documentary about physical differences. Her goal was to gain insight so she can better teach about awareness in her classroom and beyond. We look forward to seeing the finished product in the near future! Maggie can be reached at [email protected]. Everyone then enjoyed a spontaneous “Kids on the B l o c k ” p u p p e t show about basic respect for everyone and their differences performed by mom, Kristin Martell. This is a super way for children to learn about many different disabilities and social issues in today’s world. Kristin would be happy to share with other parents how simple it is to add this program to your school’s curriculum. She can be reached at [email protected]. Additionally, throughout the day, we were visited by Shriners Hospital (Debi Latour – [email protected]) and were given the opportunity to learn about upper-limb prosthetic options and treatments. Thanks to mom, Amy Minkin, for this suggestion and contact information. We would also like to thank Bronk McConley who came up from Shriners to talk about some of the services they offer. During the talent show, we enjoyed the first-ever performance by the new “Helping Hands Band”. A music student at UNH and HHF teen mentor, Valerie Peters, did a terrific job coordinating “It’s a Wonderful Life” for several of our HHF kids with various instruments. With Valerie’s help and hard work, we hope to continue this tradition for many years to come. Thank you, Valerie! (Continued on page 4) Page 2 H E L PI N G H A N D S N EW S L E T TE R Winter Outing Pictures Fortunato Jewelers If you are ever looking for jewelry, Gil Fortunato is the guy to hook up with at Fortunato Jewelers. Their Toll free phone number is 888-345-4060 or check out their beautiful website. Page 3 http://www.fortunatojewelers.com Thanks again to the Fortunato Family for continuing to support our winter raffle and Youth Group. We appreciate it! Page 3 H E L PI N G H A N D S N EW S L E T TE R Winter Outing 2007 (Continued from page 2) We would like to once again thank Peg Ganim for her continued help with our craft activities. Special thanks goes to The Fortunato Family for their continued support and donation of beautiful diamond earrings, won by Dayna Waskiewicz. Also, congratulations to Stephen Rizzo for winning a scholarship to the ACA Summer Camp in Georgia this July (all expenses paid)! Many thanks to The Galvin Family for scoring the awesome sports tick- ets to the Boston Bruins (won by Guilano Lin), New England Patriots (won by Ryan Jefferson) and Boston Red Sox (won by Connor Beverly). What a wonderful ending to a super day! We appreciate all raffle donations made by our generous families and their participation in this fundraiser. It certainly helps us defray some of the costs for the weekend. Our winter outing was jam packed with activities for all to enjoy. Thanks to Nancy Soucy and Patti Garofalo for making it all happen! Summer Camp Activities A campfire, hotdogs, s’mores, stars — all the signs show that it’s time for summer camps. Timehonored activities such as horseback riding, swimming, and nature walks become commonplace to youths enjoying a nice day or week in the woods. It’s also a time to make new friends and to help adolescents with physical disabilities understand that they are not alone. So pick up those phones or fire up the computer and make reservations for a summer of fun, adventure, and new experiences and friendships. Amputee Coalition of America Youth Camp attended camp in the past and have exhibited strong leadership qualities. This summer residential program provides a socially stimulating environment where these youths can meet others like themselves. There is a $500 fee for camp, which includes travel expenses. The ACA will provide scholarships to families that demonstrate financial need. For more information on the camp, please visit the Youth Activities Program (YAP) Camp page on the ACA’s Web site at www.amputee-coalition.org/youth_camp.html, email [email protected], or call Derrick Stowell, ACA Youth Activities Program Coordinator, at 888/267-5669 x 8130. Warm Springs, Georgia (July 18-22, 2007) The annual Amputee Coalition of America (ACA) Youth Camp provides youth with limb differences (ages 10 to 16) four fun-filled days of educational outings, team-building exercises, sports and opportunities to learn from peers and adult amputee mentors. Starting in 2007, the camp will have a junior counselor program for 17 yr. olds that have Page 4 Adventure Amputee Camp Bryson City, North Carolina Sponsored by Adventure Amputee Camp, Inc., this camp is for children with limb differences (ages 8 to 17) and is held in Bryson City, NC, at (Continued on page 5) H E L PI N G H A N D S N EW S L E T TE R Summer Camp Activities (cont’d) (Continued from page 4) the Nantahala Outdoor Center. There is a $25 registration fee, although this is waived for lowerincome families. Attendees must provide their own transportation to and from the meeting locations (Knoxville, TN; Atlanta, GA; Bryson City, NC). Camp is being held July 11-15, 2007. For more information, contact the camp director, Missy Wolff-Burke, PT, at 540-545-7238 or e-mail her at m w o l f f @ s u . e d u o r v i s i t www.adventureamputeecamp.com. be in Maine August 1-4th. The final session will be held in Idaho August 23-26th. Some sponsorships are available as well. For more information, call Mary Leighton at 207/240-5762, or visit the Camp Ability Foundation Web site at www.campability.net. Congenital Hand Camp – Hands to Love Starke, Florida Young amputees between the ages of 6 and 18 can enjoy camp and challenges for four days. Activities include swimming, fishing, hiking, volleyball, horseback riding, zip wire, ropes course and wall climbing, just to name a few. The camp is held August 9 through August 12. There is a $5.00 registration fee which can be waived if needed. Sponsorships are available to defray the cost of the camp. For more information, call Beverly Gryth at 434/293-9720, or Ed Hicks 434/243-4670, 434/263-5432 or email at [email protected]. Hand Camp is a weekend camping experience for children who have upper limb differences and their families. It provides an opportunity for children to try new exciting activities, to interact with others, and to just be a kid. The camp is currently held one weekend a year at Camp Crystal Lake in Starke, Florida. The camp also provides opportunities for parents to network and share their experiences. The Camp was started by Dr. Paul Bell, and two hand therapists, Ruthie Dell and Ginger Sterna. Hands to Love provides a way for medical professionals, families, and children with limb differences to learn and grow. For more information, call (352) 2737382, e-mail the camp at [email protected], or visit their website at www.handstolove.org/. Camp Ability – Camp Ability Foundation Camp C.A.M.P. Rome, Maine, California and Idaho San Antonio, Texas Camp Ability was established in 2004 to provide children with limb loss and their families the opportunity to network with other children and their families, as well as experienced physical and occupational therapists, prosthetists, and patient advocates. Many young adults with limb loss will also attend to share their experiences and provide the inspiration and outlook to transform disability to ability. Nature, sporting events, and arts & crafts highlight daily activities. In 2007, Camp Ability will have three sessions. The first will be held in California June 20-23rd. The second session will C.A.M.P. (Children's Association for Maximum Potential) enables children with disabilities to thrive in a recreational environment where safety and nurturing are primary. Camp C.A.M.P is a series of five-day summer camp sessions for children with special needs who may not be eligible to attend other camps due to the severity of their disability or medical condition. We also include activities for campers' siblings without disabilities. Fees can be waived or lowered by cost-sharing programs, sliding fee scales, and camp scholarships for lower- Adventure Camp, Inc. Middleburg, Virginia Page 5 (Continued on page 6) H E L PI N G H A N D S N EW S L E T TE R Summer Camp Activities (cont’d) (Continued from page 5) income families. For more information, call 210/292-3566, e-mail [email protected] or visit the C.A.M.P. Web site at www.campcamp.com. Camp Cheerful Strongsville, Ohio Children ages 5 and older with and without special needs can enjoy all that Camp Cheerful has to offer in a day camp setting. Cheerful Day Camp includes all the activities of traditional camp sessions, including swimming, horseback riding, archery, nature study, sports, canoeing, and much more. Cheerful Day Camp is offered in one-week sessions, Monday through Friday, from mid-June through mid-August. The camp day runs from 9 a.m. to 4 p.m., with extended care available from 7:30 to 9 a.m. and/or 4:30 to 6 p.m. Campers can register for multiple sessions. For more information, call Tim Fox at 440/238-6200 ext. 23, e-mail [email protected], or visit the Web site at www.achievementcenters.org/. Camp Riley Held at Bradford Woods, Camp Riley can be attended by young persons with disabilities, ages 8 to 18. The one-week sessions are divided into age groups throughout the summer. Returning campers and first-timers look forward to time-honored recreational activities – like swimming, horseback riding and canoeing - and the opportunity to meet others with similar disabilities, all in a setting tailored to fit their needs. Most importantly, campers gain a sense of increased independence in a fun and encouraging setting. For more information, call Heather Perdue at 317/634-4474 ext. 112, email [email protected], or visit the Web site at www.rileykids.org. Camp Victory Columbia County, Pennsylvania Children who are chronically ill or physically disadvantaged need help and encouragement to cope with their lifelong challenges. Recognizing the sense of isolation and frustration these challenges can bring to the children and their families, Camp Victory was designed and built to handle their special needs. At Camp Victory, partner groups operating camps for chronically ill or physically disadvantaged children can offer the greatest pos- Indianapolis, Indiana (Continued on page 7) If you Need us… Patti Garofalo President (508) 359-8491 [email protected] Nancy Soucy Vice President/Secretary (508) 541-8373 [email protected] Page 6 Peg Ganim Treasurer (401) 723-5814 [email protected] Beth Morley Newsletter Editor/ Family Directory (508) 622-1021 [email protected] H E L PI N G H A N D S N EW S L E T TE R Summer Camp Activities (Cont’d) sible care, support, personal growth and pleasure. In addition to the regular camp scene, activities include casino nights, petting zoos, and talent shows. Both weekend and weeklong sessions are available. For more information, call 570/4586530, send an e-mail to [email protected], or visit the Web site at www.campvictory.org. fully accessible setting. Day camps, residential camps, and respite camps address the diverse needs of children with physical disabilities. These camps offer the full experience that comes with camping, including sing-alongs, campfires, boating, nature walks, and arts & crafts. For more information, call 800/221-6827 or visit the Easter Seals Web site at www.easter-seals.org. Wonderland Camp KidCamps.org Rocky Mount, Missouri KidCamps.org is one of the most comprehensive directories of camps and summer experiences, listing over 24,000 camps and summer programs, with over 100 programs listed for children with physical limitations alone. Other camps focusing on disabilities include developmental disabilities, diabetes, epilepsy, cancer, and speech, hearing, and visual impairments. For further information, call toll-free 877/242-9330 or visit the Web site at www.kidscamps.org. (Continued from page 6) People of all ages and disabilities are welcome at Wonderland Camp. The mission of Wonderland Camp is to provide a fun, educational camp experience for people with mental and physical disabilities, to offer a respite from daily caregiving for family members and healthcare workers, and to provide and nurture a personal development experience for volunteers and staff. For more information, call 573/392-1000, e-mail [email protected], or visit the Web site at www.wonderlandcamp.org. National Sports Center for the Disabled ADDITIONAL CAMP RESOURCES American Camping Association The American Camping Association is a community of camp professionals who ensure the quality of camp programs. Their searchable database contains listings for camps that provide specialized services for persons with disabilities. For more information, contact them at 765/342-8456 or visit www.campparents.org. Easter Seals Camps Winter Park, Colorado For the past 34 years, the NSCD has offered children and adults with disabilities the opportunity to participate in a variety of outdoor sports and recreational activities. Outdoor mountain recreation is ongoing from mid-June to early September. The summer program now includes mountain, tandem, and hand-crank biking, hiking, in-line skating, therapeutic horseback riding, white-water rafting, fishing, baseball camps, rock climbing, and camping. For further information call 970/726-1540 or visit the Web site at www.nscd.org/programs. Various Locations Nationwide With 140 sites nationwide, Easter Seals offers extensive camping and recreational programs that provide all the joy and challenges of camping in a Page 7 H E L PI N G H A N D S N EW S L E T TE R Looking back in time….Birth through Age 5 - Part 4 BY: LAURA TOFINCHIO For those of you that have not had an opportunity to read my first three articles, this is the fourth article reflecting back in time at some of the triumphs and challenges my daughter, Brittany, has experienced as a congenital bilateral, below elbow amputee. In other words, she was born missing both her hands and part of her arms below the elbow. Brittany is now 19 years old. Our First Year On August 4, 1987, our daughter, Brittany, was born. She was born missing both her arms below the elbow. Brittany is our first child and my first pregnancy. Like many parents, you are filled with anticipation and joy. I had two ultrasounds, neither of which indicated any problems. I had a perfectly normal pregnancy, and we have no family history of birth defects. As a result, her limb loss was a shock when she was born. We loved her and embraced her like most parents do, but we also went through a grieving period that most parents don’t go through. As parents, we want to give our children things we didn’t have, to be able to do the things we couldn’t do and to have greater opportunities than we were given. Knowing that Brittany was starting out in this world with less than what we had physically and being so uncertain of the future, we went through a period of grief. We did not grieve over the fact that our daughter was different but over the loss of her limbs. We couldn’t begin to fathom how someone missing part of their arms and their hands could function without our assistance for the remainder of their life. The questions that went through our minds were endless. They began with how would other children treat her, how will she write, how will she eat on her own, what can we do to make her life easier, how will she feel about herself, are there other problems that we don’t know about and the obviPage 8 ous question – why us????? As a result of numerous phone calls (pre-internet), we learned about a program in Texas called “Loving Arms” that was fitting young children with Passive and Myoelectric Arms. Passive arms are like “baby doll” arms. They are arms with hands that fit over the elbow and give the child the extension they need to reach for and bat at objects. They also allow the child to the get used to wearing a prosthesis before getting the more advanced Myolelectric. The Myolelectric Arms work with a battery and a sensor. For young children, the small battery is hooked onto their clothing. The sensor is located in the cast and is pressed against the child’s forearm muscle. When the child flexes the muscle, the hand opens and when they flex again the hand closes. It takes practice to perfect this movement, but once they do, it allows them to pick up objects, feed themselves and do almost everything a two handed child could do. Keep in mind this was the technology available back in 1987. After researching this option, we decided to enroll her in the Texas program. So, when she was 3 months old, we boarded a plane to Texas to fit her with passive arms which were to prepare her for the Myoelectric Arms. When Brittany’s arms were cast for the prosthesis, she screamed. She hated being fitted for the arms and didn’t like to wear them. Every time we had to put the arms on, she would scream and cry. They did not cause her pain, she just needed to adjust to them. It was so painful hearing our 3-month-old little girl crying over what we felt needed to be done so that she had every option (Continued on page 9) H E L PI N G H A N D S N EW S L E T TE R Looking back in time….Birth through Age 5 - Part 4 (Cont’d) BY: LAURA TOFINCHIO (Continued from page 8) open to her later. This is where the tough love approach began and continues to be used to this day. Not only did we deal with the pain of having to put our daughter through this, we had to deal with the reality that her Myoelectric Arms were going to cost $30,000 which we didn’t have and weren’t sure the insurance company would pay for! As Brittany adjusted to her new devices, she began batting at objects and picking up objects with her passive arms. It did not take long for her to adjust to them, and she got quite adept at using them. Since my husband and I worked full-time, we enrolled Brittany in daycare. The caregivers were very receptive to having Brittany and had no problem learning how to put on and take off her passive arms when necessary. Brittany did not wear the arms all the time since it was important that she also use her own arms. Myoelectric Arms At the early age of only 11 months, she was fitted for Myoelectics Arms at Newington Childrens Hospital. We chose not to go back to Texas since Newington was willing to work with us. She became their youngest patient fitted with these arms. She handled the arm casting much better this time and was more receptive to using the arms since these hands opened and closed. There was extensive training required with the Occupational Therapist and sometimes morning battles to get her to wear them. Most parents fight with their kids to brush their teeth, we battled over putting on her arms. However, we felt it was important that she get used to wearing the arms so she would have every opportunity to use them to her advantage now and in her future if Page 9 she chose to do so. We knew that when she got older, it would be her choice whether to continue to wear them or not. Hiring an Attorney Unfortunately that battle wasn’t the only battle we had to deal with. As a result of a billing error from Texas, our insurance company did not want to pay for the Myoelectric Arms. Facing a potential $30,000. bill, we hired an attorney to pursue this issue with the insurance company. Fortunately, we won the case. However, the experience was emotionally draining even though it was essential in our case. Growing As time marched on, Brittany got used to her arms and so did her daycare. We trained them on putting the arms on and about the proper care. We felt it was important Brittany be around other children. As with all children, they benefit from interaction with their peers and be accepted and treated well. In effort to make things simpler, we learned to adapt and she learned to adapt. From purchasing bottles that had hollow centers so she can hold them, to toys that she would be able to grasp, to using wide bowls so she could grab her cheerios, it made life a little easier. We had to look through her eyes at her world to determine what would and wouldn’t work for her. Much of this was trial and error. We made a conscious effort to never tell her she couldn’t do something. We always let her figure it out on her own, sometimes with assistance and sometimes without. To this day, she continues to amaze us with how she accomplishes so many (Continued on page 10) H E L PI N G H A N D S N EW S L E T TE R Looking back in time….Birth through Age 5 - Part 4 (Cont’d) BY: LAURA TOFINCHIO (Continued from page 9) things we thought she couldn’t at birth. Once in a while, we would have a good giggle when she would wiggle out of her arms in public places. The expressions on people’s faces were priceless. Even though we felt bad for them in a way, we couldn’t prevent our strong-willed little girl from taking them off when she wanted to – so instead, we had to laugh. These situations would have made a great “Candid Camera” show! Choosing clothing was a bit of challenge because we wanted her to learn to dress herself like all other kids. So, we purchased lots of pullover shirts, stretch pants and velcro shoes. We also discovered an excellent tailor and had all her long sleeve shirts, sweater and jackets altered so they fit her arms. This made life a lot more manageable. No More Myoelectrics At around the time Brittany turned 3, she was discovering that she liked to do more things with her own arms rather than using the Myoelectrics. Because we thought this day would eventually come, we were ready and let her choose when and if she wanted to wear them. She opted not to wear them again. However, we knew that she had the option to rethink it in the future. Without the heavy Myoelectric Arms, Brittany was still able to fully dress herself, feed herself and take care of her personal needs. The sense of touch with her Page 10 own arms allowed her to do more with them than she had with the prosthesis. However, we do not regret giving her this option early in her life and are grateful she made her own decision about using them or not. Daycare and Outside Activities Life in daycare was great, because the group was small and familiar. There was a lot of communication between us and the daycare staff, and Brittany felt loved and accepted. As an activity, Brittany participated in the dance class and took swimming lesson. Learning to swim took a little longer than most children, because she didn’t have hands to cup the water to push her along. However, after a number of lessons, she mastered it and stills swims to this day. Being out in Public To me it was important that Brittany be treated like any other child, NOT SPECIAL, just like everyone else, which includes going out and being with the public. Because of her exposure to others, she has taught so many people to appreciate what they have, that life doesn’t end when something is taken away from you or missing and that if you love yourself the world will also love you. Her message was loud and clear by simply watching her determination. Having a Second Child During Brittany’s first year, we never thought we would have a second child. The work involved with Brittany and her arms was a labor of love but time consuming. Also, we were fearful the second child could have something wrong which would take more time away from our already busy days. What if the disability was worse and more demanding? Since there was no known cause for Brittany’s dis(Continued on page 11) H E L PI N G H A N D S N EW S L E T TE R Looking back in time….Birth through Age 5 - Part 4 (Cont’d) BY: LAURA TOFINCHIO (Continued from page 10) ability there were so many questions that went through our heads. We didn’t know what was in store for Brittany and how much time we would have to devote to her above and beyond a “normal child”. The future was so uncertain and we were scared. Two and a half years after Brittany’s birth, we decided to have another child. I met with a nutritionist and took a number of nutrients daily that supported a variety of tissue, body and organ functions as a way of decreasing the chances of having anything go wrong. During the pregnancy, I had a couple of ultrasounds and amniocentesis. All appeared to be normal. Despite the tests, I developed a fear that my child would be deaf. I feared that since Brittany didn’t have hands, she wouldn’t be able to communicate with the second child. At times, these fears could be all-consuming and my imagination would run wild. Fortunately, our son, Garrett, was born without any problems. As both Brittany and Garrett have grown, they have been there for each other and supported one another. Knowing they have each other is a great comfort to my husband and me. Obviously, I am very thankful that my fears did not Page 11 prevent me from having that second child! Moving on to Elementary School As the elementary school approached, new fears, new concerns, new kids, new environment prompted a whole new set of questions. Even though this sounds like many other parents’ concerns when their child goes to elementary school, the questions are different - “will she be treated differently or poorly based upon her appearance”, “will it devastate her for the rest of her life”, “will my extraverted child that had a positive self image in daycare become an introverted child with a poor self image if the kids are cruel and if the teachers “baby” her too much or tell her she can’t do certain things”? How much control can a mother have??? A lot more than you think…Keep on building that all-important self-esteem and stay connected in your children’s daily lives…It’s so worth it!!! I hope you found this article helpful. My last article will share with you where Brittany is now and her college experiences. As I mentioned in my last article, if anyone is interested in speaking with me directly, I can be reached at 203 925-0446 or via email at [email protected]. Brittany and I have had 19 plus years of challenges in our lives, and we wouldn’t change a thing! We would be happy to assist you in whatever way we can. My best to all of you. H E L PI N G H A N D S N EW S L E T TE R HHF On-Line Lending Library is Ready to Serve You Our on-line lending library is full of resources that can be accessed via our website (www.HelpingHandsGroup.org) for all of our members to utilize. We feel it is important to have some inspirational and informational materials available to all families. We hope all of you will take full advantage of the wonderful opportunity to read some great materials relating to children and limb loss. You can browse our materials and choose what interests you. The material will be sent to you for one month. After that month, we ask that you return your selections for others to enjoy. If you have anything to add to our library or suggestions for us, please let us know at [email protected] We look forward to serving you in the near future! Book Review– Elmer Elmer, with a patchwork coat, is the jester in a herd of elephants. But, he starts to feel like the only reason they laugh at his jokes is because of how he looks. So, off he goes to roll in some gray berries to cover up his coat and when he returns to the herd, they just think he's another elephant. Without him, they just stand there, are very serious, and have no fun at all. Somehow, Elmer thinks this is funny and just has to laugh so he says "Boo" and all the elephants jump about a mile. They start laughing and wish Elmer was there to hear the joke when it starts to rain and off comes Elmer's disguise. They all laugh at his wonderful jokes and are very happy he's there. It's just a great book, very colorful and very intriguing to read. From a Reader on Amazon.com 'Little Fins' support group offers invaluable resources Gerry Hanggi is your typical 5-year-old. He plays T-ball, learns karate and jumps on the furniture. But one thing sets Gerry apart from most of his peers, although he rarely mentions it; he was born without a left hand. "He doesn't seem to notice he's different," said his mother, Sonja Hanggi. "I don't think he sees it as a big deal at all." The Lino Lakes boy was born with an upper limb difference, meaning he lacks a hand and part of a forearm. His doctors don't know what caused the limb difference, which is not genetic and occurs in about one in every 2,500 births. "I had no idea you could be born without a limb," said Sonja. "Nobody ever told us about that." Sonja and her husband, Jerry, were "surprised" after Gerry was born, since none of the prenatal tests indicated anything was wrong. "I'll be honest, I went through a little stage of depression," said Sonja. "I worried about him. I thought, 'how is he going to make friends, or tie his shoes, or learn Page 12 all the other things he's supposed to learn?'" Instead of feeling sorry, however, Sonja decided to take action. She founded a support group for parents of children born with upper limb difference, which has provided invaluable resources for her family. "It's really nice to have other families to talk to who are going through the same things we are," she said. She and fellow mom Elizabeth Bystrom, of White Bear Lake, started the group and named it "Little Fins," after the animated movie "Finding Nemo." The film's hero, a clown fish, is born with one fin smaller than the other. "It's great to have this help, to bounce ideas off of each other," said Sonja of the group. The Hanggis had little luck finding their own support after Gerry was born. They asked around, but nobody knew of any such support groups in the Twin Cities. They eventually met Elizabeth at a pizza party at Gillette Children's hospital, whose 3-year-old daughter, Lila, was born without a right hand. For H E L PI N G H A N D S N EW S L E T TE R 'Little Fins' support group offers invaluable resources (Continued from page 12) the Bystroms, it wasn't a surprise. Ultrasounds revealed Lila was missing a hand. Lila knows she's different, Elizabeth said, but she has learned that it's just one of the many differences that make her special. "Mommy is short, Daddy has curly hair and Lila has a little hand," Elizabeth said. "We're all different, that's what makes us the same." The adventurous little girl doesn't let her "little hand" slow her down. "She's invincible," Elizabeth said. "That kid can do anything." Lila uses a prosthetic, her "helper hand," as she calls it. "She can change clothes faster than a runway model," Bystrom said. Many parents choose not to outfit their child with a prosthetic. After much soul-searching, the Bystroms decided they would. "We wanted her to learn to use one while she is young," Elizabeth said. "Once she is older, she will be able to decide if she wants to wear it or not." "I'm glad we now can offer advice and support to the new parents that come to us," she said. Gerry also has a prosthetic hand. But he prefers to go without the prosthesis, and has learned to do almost everything the other kids can do without it, Sonja said. Until recently there were about 25 Little Fins families. But last month, Little Fins was featured on KARE 11 News. The publicity brought dozens more families into the group. Sonja said it's a comfort to share ideas with parents going through the same unique situation. For instance, Sonja had a hard time finding a "sippy cup" for Gerry, since they all required both hands to Page 13 grasp them. "I probably bought every cup Target had," she said. She eventually found a cup that worked, and is now able to pass her tips on to other parents. Gerry is now one of the oldest children in the group, and Sonja hopes seeing him running around like a normal child is a comfort to other parents. "It would've helped us so much to see other kids running around (when Gerry was a baby)," she said. "Everyone said he'd be fine, but you still worry." The kids themselves pay little attention to each other's limb differences when the group is together, Sonja said. "It's so funny; they don't even notice," she said. "Maybe when they're bigger, but right now, it's 'let's go play.'" Elizabeth said it helps to know that when they do get older, they will have other children like themselves to share their frustrations. "They will have someone to call; someone they relate to; someone else who understands what they're going through," she said. Gerry now is in his second year of preschool, and so far, the other children haven't reacted much to the limb deficiency. "Most reactions go over his head," said Sonja. "Eventually he will have to explain it himself." The Hanggis are practicing responses with him, such as "this is the way I was born," or "God made me this way." Some issues still loom ahead, such as handling school, driving and sports. And eventually, Sonja said, Gerry will notice more when others point or stare. "If people are curious, we'd much rather they ask about it instead of pointing or whispering," she said. "I know people are curious, and it's OK to ask." At first, "I tried to figure out a reason for why this happened," she said. "It's now pretty clear to me that (Little Fins) is the reason." http://presspubs.com/articles/2007/01/24/ news/200701247-archive.txt H E L PI N G H A N D S N EW S L E T TE R Saving Summer - Mary Leighton, 30 How She Stays Fit Pilates. As a certified instructor, she's adapted a class for her campers. Latest Obsession Decorating her newly built New England Cape-style house on 150 acres Why We Admire Her When Leighton met 13-year-old Jonathan the first day of camp, he was so self-conscious about leaving his wheelchair — he was missing a leg — that he barely spoke. The occupational therapist eventually coaxed him out of his chair to try Pilates and learn how to hop. By the time the Hawaiian-themed farewell bash came around, Jonathan was doing the limbo and grinning ear to ear. Helping kids with limb loss feel comfortable being themselves is the reason Leighton founded Camp Ability, a yearly 4-day event. How She Got Started In 2002, Leighton was working with 2-year-old Nicholas at Therapy Corner, a private clinic in Winthrop, Maine. Missing both arms, one leg, and part of one foot, Nicholas took his first steps ever with the help of a prosthetic. Amazed by his ambition, Leighton, who'd been looking for a professional specialty, had found her niche: prosthetics. In April 2004, a fellow therapist sug- gested she start a summer camp for disabled kids. At first, Leighton laughed. But a few days later, she phoned the Pine Tree Society, a foundation for disabled people that runs a 280-acre summer camp for kids with special needs. They agreed to host a minicamp. She began throwing spaghetti suppers to raise money and calling colleagues for advice. Health care companies like Hanger Prosthetics & Orthotics soon signed on as sponsors. By August 2004, she'd roasted her first s'mores with five campers. What She's Accomplished In 3 years, Camp Ability has hosted 59 campers (14 of whom attended a sister camp in Coeur d'Alene, Idaho, which Leighton co-opened last fall). In addition to hiking, swimming, and building campfires, kids attend support groups, exercise classes, and therapy sessions. "Helping these kids realize that this is just the beginning of what they can accomplish makes all this work worthwhile," says Leighton, who continues to work full-time at Therapy Corner and uses vacation days to run the camp with a physical therapist and 50 part-time volunteers. What's Next This summer Leighton is opening a third camp in Big Bear, California. For more information on Camp Ability at any of their three locations in Maine, Idaho or California, see the article in this newsletter entitled “Summer Camp Activities” (pg. 3), or visit their website at http://www.campability.net. Page 14 H E L PI N G H A N D S N EW S L E T TE R New Members Welcome to the many new families that have joined Helping Hands in the past year. If we missed your name please contact Beth Morley at (508) 622-1021 or [email protected] Families • Rita Peters and daughter Mia from Riverview, FL • Kevin & Meg Peterson and daughter Morgan from Milford, NH • Nicole Baird and son James from Runnemede, NJ • Josie Philon and daughter Julia from Newtown, PA • Prashant Bhardwaj and daughter Misha from East Rutherford, NJ • Kallie & Mark Pournaras and son Alexander from Nashua, NH • Alison Broksas and daughter Eva from Alexandria, VA • • Heidi Carlson and daughter Julia from Concord, NH Kellyann Reddick and son Jace Jin David from Hulmeville, PA • Cynthia Carter-Betancourt and daughter Sarah from Dayton, NJ • Marie & Carl Sanderson and son Christopher from Walcott, CT • Brenda Copeland-Moore and daughter Michaela from Larsen, WI • Michele Schlapfer and son Jacob from Wethersfield, CT • Don Smith and son Brian from Washington, DC • Anne & Michael Crane and son Aiden from Littleton, CO • Nikki Smith and son Mason from Yucaipa, CA • Leslie Edmark and son Conner from San Antonio, TX • Cat Strickland and daughter Nicole from McDonough, GA • Pam Fox and daughter Alyvia from Midwest City, OK • Brandy Thomas and daughter Amelia from Kinder, LA • Sharon Gerald and daughter Hannah from Groves, TX • Ginger Tripp and daughter Brielle from Somerset, MA • Kelly Goede and son Ty from Alachua, FL • Bennie Tullis and son Josiah from Snyder, TX • Angela Gonzalez and Baby from Houston, TX • Joni Wagner and daughter Abby from Salem, SD • Honor Hall and daughter Jadyn from Santa Barbara, CA • Desiree Williams and daughter Peyton from Alva, FL • Joel & Almira Hunter and son Cosmo from Henderson, NV • Tamera Wong and daughter Bethany from Clovis, CA • Christina Jachens and daughter Monique from Pisgah Forest, NC • Emma Kennedy and son Sam from Edgartown, MA • Milissa Kowlessar and son Ezekiel from Brooklyn, NY • Carrie Davis-Croson , Adult amputee • Debra Lemke and son Nick from Waukesha, WI • Shatona Lunceford from Mountain City, TN • Rita Lytle and son Joshua from Springfield, IL • Margaret Rakowski from Lawrenceville, NJ • Laura Mann and daughter Alexis from Harrison, MI • Javier Serrano from Somerville, MA • Connie Mantlo and daughter Melody from Gold Hill, OR • Maria Marino and son Luca Guyer from New York, NY • Sue Marshall and Baby from Toronto, ON • Margaret McGowan and son Brian • Claribel Mendez and daughter Jayden from Newark, NJ • Anne Miller and son James from Cambridge, MA • Sheryl Nyary and son Tyler from Biloxi, MS • Rebecka O'Neal and daughter Monica from Oklahoma City, OK Page 15 Interested Persons Professional • Amy Browning from Dallas, TX H E L PI N G H A N D S N EW S L E T TE R Donations If there is any way you can help us to continue our mission of keeping all of our families connected via newsletters, our new website and annual events, it is very much appreciated by all! Any donation received (other than annual dues) is recognized by a formal thank-you letter to the donor. In Memory of: Helen Tatlow • Alice & Ray Fitzgerald In the Honor of: Annie Garofalo • Mark Carney • Lisa Edgar • Joan & Lee McGrath • Annmarie & Keith Morse • Frances Garofalo • The Guernsey Family (Kenn, Lana, Kate & Alex) Shawn Terrill • Anne & Robert Stent Joseph Haley • Ava Ferrie • Jeana Lee • Joseph & Kimberly Spadaccini Anne & Robert Stent Danielle Sousanes Blair E. Rodgers • Family of Patricia Thomas • James & Rita Rodgers • Frank W. Marvin Jr. • Christine and Vance Likins • Mary & Russell Williams • Elizabeth Magee • Mr. & Mrs. Russell Peach, Jr. • Lois Denis • St. Sophia Philoptochos Society Izabel Estrin • Edie Denney Caitlin Cole • H. Edward & Josephine Reed Matching Gifts (Corporate) William Garber • Intensimed, LLC • Anne & Robert Stent • BECFI • Nancy & Steve Soucy • Smart Destinations, Inc. Eva Johns • Nancy & Steve Soucy Fundraiser Erin Soucy—Beaded Bracelet Sale raised $125.00 Thanks Erin! Page 16 H E L PI N G H A N D S N EW S L E T TE R Giving Your Child the Gift of Self-Esteem Guest Editorial: by Char Greer Volume 9 · Issue 4 · July/August 1999 I have had the opportunity of working as manager of the Area Child Amputee Center (ACAC) in Grand Rapids, Michigan, which provides services to families and children with limb differences. During the past 10 years, I have talked with many families who have children with limb differences and have learned what type of information and support is most helpful to families. Most new parents have planned for months, awaiting the arrival of the new baby, and thinking about the future. When a child with a limb difference is born, suddenly the child’s future seems clouded and parents have many questions, such as: “Will my child be successful in school?” “Will my child be able to ride a bike and run like other children?” “Will my child have a good self image?” “Will my child have friends, grow up, get married and have children?” These questions and concerns are normal as are feelings of sadness. It is important for families to take time to adjust and be with their new baby. This will help alleviate some of the feelings of sadness; however, this is also the time parents need to seek out information, get the support necessary to make adjustments and begin understanding what the future might hold for their child. One mother, who came to the Center for an initial visit, told me how shocked she was when her baby was born with a missing limb. She would go to her son’s crib and check his body several times during the night, hoping that there would be an arm where there was none. It took her a while to accept that the limb loss was real and permanent. But holding, caring for and loving her son made some of her grief disappear and allowed her to take the necessary steps toward setting up his evaluation and begin planning for his future. As soon as possible after birth a child with limb loss should be seen by a team of professionals at a child Page 17 amputee center. This team should consist of a physician, such as an orthopedic surgeon or physiatrist, a pediatric nurse, physical and/or occupational therapist, social worker, psychologist, dietitian and recreational therapist. A prosthetist should be part of the team for those children who will need prosthetic devices for functional and cosmetic purposes. These professionals should have experience working with children with limb loss, and should provide parents with information on what to expect regarding medical needs, future surgeries, therapies, and use of adaptive equipment and/or prostheses. An important role for the team at ACAC is to listen to the family’s concerns and fears, and to answer questions about growth and development. Our goal is to work closely with the family and provide input that enables the child to parallel normal growth and development. Two questions families often ask is, “Will my child be accepted by family and friends? And how can I raise my child to have a healthy self-image?” All parents want their child to be accepted by friends, relatives, classmates and teachers. This process of acceptance begins with parents learning how to comfortably respond to questions about their child’s physical difference. This can be difficult at first. But brief answers to others is usually enough and, though it may be hard at first, in time it usually becomes easier. Childhood experiences are the primary influences that will determine the child’s self-esteem. The parents, guardian and other family members send verbal and nonverbal messages to the child, on the basis of which feelings of self-worth are formed. If a child is told to cover up the limb difference and not talk about it to others, a negative self-image can develop. Conversely, if the family members encourage open discussions about the limb difference, and maybe even see some humor in the situation at times, the child will begin to feel accepted. The mother of a young girl shared with me her experience of dealing with her daughter’s limb difference in a grocery store. The young girl’s lower limb prosthesis fell off while she was sitting in a shop(Continued on page 18) H E L PI N G H A N D S N EW S L E T TE R Giving Your Child the Gift of Self-Esteem (Continued from page 17) ping cart. Concerned about how her daughter might experience the stares and “wide-eyed” glances aimed at her, the mother turned what could have been a negative experience for her daughter into a positive experience. She smiled at those near her, picked up her daughter’s prosthetic leg, put it back on her, and resumed shopping. She laughs about that experience now and admits that it helped her become more open in sharing her daughter’s limb loss. She also sent a nonverbal message to her daughter that was positive. Self-concept continues to develop in the toddler years as children explore their limits, their abilities and understand how they impact others. During these years and later, setting realistic goals is an important aspect of assisting a child in developing good self-esteem. For example, if a child is interested in pursuing specific sports or physical activities, the parents can assist the child in choosing what to do. It should be an activity or sport that the child has some natural aptitude for and interest in, and there is a good chance that the child might be able to do it well. It may take a lot of work and time to learn to do the activity well. Special techniques or even assistive devices may be needed. Input from therapists, the prosthetist and other members of the child amputee center team can be useful to parents and child deciding which adaptive devices or techniques to use. Because school-age children are even more aware of differences among people and experience a great deal of peer pressure, they can become preoccupied with self-evaluation. Teasing can be especially troublesome for a child with a limb difference. Dealing with teasing by peers is an issue for children 5 to 10 years of age when relationships with friends and being “one of the gang” is important. The ACAC team recommends that parents explain to their child that everyone is different in some way and point out that most children get teased about something. It may be helpful to share some of the parent’s own experiences. Families can role-play on how to respond to teasing. It is also a good idea for parents to support the child’s attempt to handle Page 18 the problem himself. It is best if the child has the opportunity to feel competent by handling these types of situations on his own. Peer acceptance is especially an issue in early adolescence. Often there is no other child in the school with a limb difference; in fact, a child may never have met another child with a limb difference. Families and children have reported that meeting other families with children with limb differences is helpful. Each year ACAC has a family picnic with the intention of providing an opportunity for families and children to meet one another and interact in a nonmedical setting. This is held in late August before school begins for the year. One child told his family that going to the picnic and seeing other children with limb differences helps him feel better about starting a new year in school. He realized that he was not the only child who looked “different” and that others were facing similar situations with fears about meeting new classmates and teachers. It is also helpful for a child to have one or two very close friends who will stand by him, especially in difficult situations. As children develop meaningful relationships with peers, self-esteem rises. Again, a team of professionals who work with families with children with limb differences can provide support and information based on their experiences and interactions with these families. Although families with children with limb differences may have some rough roads to travel, and some serious issues to anticipate, these children can grow and develop as other children. Everyone has strengths and weaknesses, but acceptance of one’s self comes from early experiences of care and love from one’s family and support from the community and health care team. About the Author Char Greer, MPH, is manager of the Area Child Amputee Center in Grand Rapids, Michigan, an outpatient center treating children with limb differences. H E L PI N G H A N D S N EW S L E T TE R A Helping Hands Star is Born Kenzie Logan Waskiewicz and parents traveled to Hollywood, California the day after Easter for a whirlwind experience in the movie industry. Met by other upper limb and amputees from all over the country and all over the world, Kenzie, Dayna and Eric spent 10 days in the world of entertainment. To say the least, it was interesti n g , sometimes boring but alway exciting. T h e name of t h e movie is "Charlie Wilson's War" and is expected to be released around Christmas 2007. Kenzie plays the part of a young Afghan child caught up in the middle of the 1980's rebel- lion in Afghanistan. Along with other children, Kenzie is in a refugee camp/hospital. Tom Hanks and Julia Roberts are the lead actors. We did catch a quick glimpse of Tom on the day of shooting. Sorry we didn't get his autograph. It was a wonderful experience for all and a lot of new friends were made. Look for Kenzie (hopefully not on the cutting room floor ) in the upcoming movie. Submitted by Dayna “mom” Order your Duffle bag Today! Looking for something to carry all your belongings to and from the pool or gym? The Helping Hand Duffle bag is just the thing, and at only $15, it is definitely a bargain. We also have a great selection of hats and T-shirts available for purchase! New additions to the Helping Hands Store include items like the Helping Hands Beach Towels, polo shirts, and flannel pants. Check them all out at www.helpinghandsgroup.org You can print and mail the order form with a check. Much thanks goes to Helping Hands’ dad, Bob Callahan, for his efforts in providing this merchandise with our embroidered logo. Thanks Bob (& Marcy) for your support! NEW ITEM! HHF Beach Towel Page 19 H E L PI N G H A N D S N EW S L E T TE R Rizzo’s Golf Swing Improves at First Swing By Stephen Rizzo I am a below-elbow congenital amputee and have been golfing for a few years. Until this summer, I had not been taught how to golf by a pro, just my dad. Before I went to the First Swing Clinic, I got frustrated when I played. The two main reasons that frustrated me were how I sliced the ball to the right on most of my shots, and I had to 4 or 5 putt to finish one hole. So, last summer, I went to a First Swing Clinic to see if they could improve my game. When I was in the car going to the clinic, I was unsure of what they would do to try to improve my swing. When we got there, they were finishing setting up, so one pro, “Lefty”, told me to grab my clubs and start hitting some balls. He was also a BE amputee but on the opposite side of me (even though he golfed righty as I did). The first thing Lefty tried was to have me swing lefty (that means swinging forehand like he does). I could not seem to make contact with the ball. So, he told to go back to righty and try to use a flexible club that requires less strength. I took one swing with the club, and he said, “You are too strong for the flexible club”. Now that we determined that I should golf righty with regular clubs, he worked on ways to make the ball go straight. He re-arranged my grip on the club and eliminated the problem. He also helped my putting by giving me his old long putter to try. It allowed me to have a more fluent stroke and more accurate put. Now, my game is improved and I can compete better with my friends when we play. See Page 21 for listing of First Swing Clinics. Questions from HHF Families We receive many questions throughout the year from new families of children with upper limb differences. If you have any advice or questions for other families, please submit them to Patti at [email protected]. “I need help. Hannah wears a prosthesis and we have had problems with a rash we can never get rid of on her arm. We've tried all kinds of creams and using powder before we put her sock on but we don't know what to do. “ Thanks, Sharon Gerald ([email protected]) “Our daughter Caitlin is gearing up for college and we were wondering about national scholarships that might be out there for kids with disabilities. Do you have any suggestions or can you send this question to someone who may have been through the process?” Thanks, Scott and Jody Cole ([email protected]) Page 20 “Does anyone know of a company that could custom make a baseball glove for my son?” Thanks, Michele Schchlaper ([email protected]) Note: I know many of our members would benefit from this information . Please include the [email protected] email address on the email so we can include the information on our website. H E L PI N G H A N D S N EW S L E T TE R First Swing Clinics NAGA in conjunction with the Disabled American Veterans (DAV) Charitable Trust, Professional Golf Association (PGA) and the United States Golf Association (USGA) sponsors nationwide "First Swing" seminars and "Learn to Golf" clinics annually. The one-or-two day clinics bring golf professionals, physical and recreational therapists, and the physically challenged together to teach, learn, and enjoy golf. The First Swing began in 1988 and was developed and perfected by a double below knee amputee, Bob Wilson, National Amputee Golf Association Executive Director. The program was designed to instruct therapists to teach and encourage the disabled to learn, or re-learn, the game of golf — not only because just about every physically challenged individual, regardless of age, is able to play, but also because it contributes dramatically to the individual’s emotional and physical well-being, instilling self-confidence and pride in personal achievement. The First Swing also enables the individual to enjoy the unique, friendly atmosphere found on the golf course. Rehabilitation hospitals, parks, recreational departments and prosthetic and orthotic centers host the one or two-day program. The first day of the program teaches the basics of the game to therapists and others interested in correctly teaching the disabled. The rules of golf and the singular differences presented by various types of disabled individuals are discussed. Participants are invited to swing a club standing on one leg, sitting in a wheel chair, using only one hand, etc., to better appreciate the demands that will be made on their educational training in teaching others. The second day is devoted to instructing the disabled participants attending the learn to golf clinic phase of the program under the supervision of NAGA instructors. The program is open to every disabled individual and is offered at no cost to the host facility . Click here for information on how to set up a First Swing or contact NAGA. NAGA's 2007 First Swing Seminars Learn to Golf Clinics Schedule "Learn to Golf" Clinics for Persons with Disabilities April 20th Rockville, MD (Woodmont Country Club) Disabled Sports USA Julia Ray Phone: 301-217-9840 451 Hungerford Dr, Suite 100, Rockville, MD 20850 E-mail: [email protected] April 24th Charlottesville, VA (Meadowcreek Golf Course) Charlottesville Rec. & Leisure Svcs. Mildred Spicer Phone: 434-970-3264 P.O. Box 911, Charlottsville, VA 22902 E-mail: [email protected] April 25th Philadelphia, PA (Burholme Golf Center) Moss Rehab Hospital Kristen Gebhardt, CTRS Phone:215-663-6717 60 E Township Line Rd., Elkins Park, PA 19027 E-mail: [email protected] May 4th Center Valley, PA (Center Valley Club) Good Shepard Rehab Hospital Linda Bolliinger, CTRS, Phone: 610-776-3588 501 St. John St., Allentown, PA 18103-3296 E-mail: [email protected] (Continued on page 22) Page 21 H E L PI N G H A N D S N EW S L E T TE R First Swing Clinics (Cont’d) (Continued from page 21) May 4th & 5th Inglewood, CA (Lakes-El Segundo Golf Course) Centinela Freeman Hospital Karen Roseman RPT, Phone: 310-674-7050 ext 3107 333 N. Prairie Ave., Inglewood Ca 90301 E-mail: [email protected] May 7th Piscataway, NJ (Fairway Golf Center) JFK Rehab Institute P & O Clinic Sue Callaghan, PT Phone: 732-321-7056 65 James St., Edison, NJ 08818 E-mail: [email protected] May 10th Saddlebrook, NJ (Willowbrook Golf Center) Kessler Institute for Rehab Ann Marie Chesterman Phone: 201-368-6012 300 Market St., Saddlebrook, NJ 07666 E-mail: [email protected] May 14th Lyons, NJ (MAVERIC Driving Range & Learning Center) VA Medical Center Bob Valentino Phone: 908-647-0180 xt 6884 151 Knollcroft Rd., Building 57, Room 148 Lyons, NJ 07939-5000 E-mail: [email protected] May 16th Marlton, NJ (Indian Springs Golf Club) Marlton Rehab Hospital Elizabeth Louie, CTRS Phone: 856-988-8778 x 2033 92 Brick Dr., Marlton, NJ 08053 E-mail: [email protected] May 18th Elkridge, MD (The Timbers at Troy) Nascott Rehabilitation Services Jason Bulger Phone: 800-535-6556 x2159 2301-C Broadbirch Dr., Silver Spring, MD 20904 E-mail: [email protected] May 21st Lincoln, CA (Lincoln Hills Club) Paul Apfel Phone: 916 408-1308 1005 Sun City Lane, Lincoln, California 95648 E-mail: [email protected] May 24th Elmsford, NY (Fairview Golf Center) Burke Rehab Hospital Deirdre Otto, CTRS Phone: 914-597-2355 785 Mamaroneck Ave., White Plains, NY 10605 E-mail: [email protected] May 25th Waterville, ME (Waterville Country Club) Waterville Area ASG & Hanger P&O Kim Collett PT Phone: 207-872-4400 Seton Rehab, 30 Chase Ave. Waterville, ME 04901 E-mail: [email protected] June TBA Harrison Township, MI St. John North Shores Hospital Claudia Cartwright Phone: 586-466-5354 E-mail: [email protected] June 1st Schenectady, NY (Stadium Golf Course) Sunnyview Rehabilitation Hospital Connie Todt, CTRS Phone: 518-382-4576 1270 Belmont Ave., Schenectady, NY 12308 E-mail: [email protected] (Continued on page 23) Page 22 H E L PI N G H A N D S N EW S L E T TE R First Swing Clinics (Cont’d) (Continued from page 22) June 2nd Baltimore, MD (Pine Ridge Golf Course) Kernan Rehab Hospital Pam Cauley, CTRS Phone: 410-448-6320 2200 Kernan Dr., Baltimore, MD 21207 E-mail: [email protected] June 2nd Braintree, MA (Braintree Municipal Golf Course) Braintree Muncipal G C Bob Beach, PGA Phone: 781-843-6513 101 Jefferson St., Braintree, MA 02184 E-mail: [email protected] June 4th & 5th Wilsonville OR (Langdon Farms GC) Patty Brescia, Senior Services Manager Phone: 503-570-1525 7965 SW Wilsonville Rd., Wilsonville, OR 97070 E-mail: [email protected] June 8th & 9th Lincoln, NE (Lincoln GC) Madonna Rehabilitation Hospital Susan Fager, MS CCC-SLP Phone 402-483-9554 / 9459 5401 South Street, Lincoln, NE 68506 E-mail: [email protected] June 8th & 9th Cranston, RI (Mulligan’s Island Club) First Swing Rhode Island Dan Clawson Phone: 401-580-4476 7408 Post Rd., North Kingstown, RI 02852 E-mail: [email protected] June 15th Addison, IL (Addison Links and Tees) Orthotic & Prosthetic Assistance Fund (OPAF) Robin Burton, Exec. Dir. (215-752-5756) 750 Bridgeview Rd., Langhorne, PA 19053 E-mail: [email protected] June 15th & 16th Trempealeau, WI (Trempealeau GC) Bill Pearse PGA Phone: 608-534-7417 Trempealeau, WI 54661 E-mail: [email protected] June 20th Fort Monmouth, NJ (Suneagles Golf Course) Manfredi Orthotics & Prosthetics Jean Manfredi Phone: 732-222-0366 289 Broadway, Long Branch, NJ 07740 E-mail: [email protected] June 21st Hershey, PA (Hershey Country Club) Hershey Medical Center Jack Van Skike Phone: 717-948-5101 383 Aspen St, Middletown, PA 17057 June 22nd Scotch Plains, NJ (Ash Brook Golf Course) Co. of Union, NJ Parks & Recreation Ellen Chase Phone: 908-527-4096 Union Co. Admin. Building, Elizabeth, NJ 07207 E-mail: [email protected] June 28th Farmingdale, NY (Heartland Golf Center) Brunswick Hospital Center Carol Chamoff, PT Phone: 631-789-7333 366 Broadway, Amityville, NY 11701 E-mail: [email protected] June TBA Piscataway, NJ (Raritan Landing GC) Middlesex Co. Improvement Society Lane Leal Phone: 609-655-5141 101 Interchange Plaza, Cranbury, NJ 08512 E-mail: [email protected] (Continued on page 24) Page 23 H E L PI N G H A N D S N EW S L E T TE R First Swing Clinics (Cont’d) (Continued from page 23) July 8th Killington, VT (Green Mountain National GC) pat whitney Phone: 802-442-4653 P O Box 429, Killington, VT 05751 E-mail: [email protected] July 20th & 21st Chaska, MN (Hazeltine National Golf Club) Mark Josefson Phone: 852-201-1463 1900 Hazeltine Blvd., Chaska, MN 55318 E-mail: [email protected] July 30th - 31st Seattle, WA (American Lake GC) Kristie Goedhard, CTRS Phone: 206-277-6683 VAPSCHS 1660 S. Columbian Way (S-117-RCS) Seattle, WA 98108-1532 E-mail: [email protected] August 2nd Apalachin, NY (The Links at Hiawatha Landing) Creative O&P & United Hospital Svcs. John Michael Goff Phone: 607-733-5280 310 Pennsylvania Ave., Elmira, NY 14901 E-mail: [email protected] September 13th New Hartford, NY (Stonebridge Golf & Country Club) Sitrin Medical Rehab Center Marc DePerno, PT Phone: 315-797-3114 xt 459 2050 Tilden Ave., New Hartford, NY 13413 E-mail: [email protected] September 14th Pomona, NJ (Pomona Golf & CC) Bacharach Institute for Rehabilitation Beth Hoffman Phone: 609-748-2081 61 W. Jim Leeds Rd., Pomona, NJ 08240 E-mail: [email protected] October 12th Rockville, MD (Woodmont Country Club) Disabled Sports USA Julia Ray Phone: 301-217-9840 451 Hungerford Dr, Suite 100 Rockville, MD 20850 E-mail: [email protected] August 17th Windham, NY (Christman’s Windham House GC) Adaptive Sports Foundation Pam Greene Phone: 518-734-5070) P.O. Box 266, 100 Siverman Way Windham, NY 12496 E-mail: [email protected] September 7th Hanover, PA (South Hills GC) Amputee Support Team & DSUSA Tommy Wade Phone: 717-630-8326 340 Grant Dr., Hanover, PA 17331 E-mail: [email protected] Page 24 H E L PI N G H A N D S N EW S L E T TE R 2007 Winter Outing—Group Picture HELPING HANDS FOUNDATION P.O. Box 332 Medfield, MA 02052 Email: [email protected] Providing Support, sharing experiences, and supplying information to families of children with upper limb differences. We’re on the Web! Http://www.helpinghandsgroup.org Grant Writing Family Directory We continue to look into grants as a source of funding for our group. Grant writing is a time consuming and tedious process. But in the end, it may be a logical way to support some of our expenses or add new programs for the group. If you are aware of any grants you believe we should apply for, please contact any of the team members: If you need a copy of the Family Directory or would like to make a change to your listing, please contact [email protected]. Our directory is confidential and is to be used solely for Helping Hands Foundation, Inc. purposes. Patti at [email protected] Vanessa Fuhs at [email protected] Michael Ferrie at [email protected] Please let us know if you have any changes to the current information listed in our family directory. Please check your information to make sure it includes your correct address, phone, email, HH child’s name and DOB, as well as sibling information.