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Spring 2014 www.annecarlsen.org

For supporters of the mission and vision of the Anne Carlsen Center

Desi’s

Dreams West Fargo woman isn’t missing a beat in the symphony of her life

Remembering Dr. Anne Carlsen family shares memories of “Aunt Anne”

Back in Time

What made the Rollarena so special

Winemakers on a Mission Husband-wife team develops tasty way to give generously

Standing Ovation

After weak start, toddler Molly Butenhoff is now reaching for the stars


Memory Lanes

B

owling is a popular Special Olympics sport, appropriate for athletes of many different ages and skill levels. It offers opportunities for physical exercise, social interaction and memory making.

Anne Carlsen Center students ages 8–21 participated on the Center’s bowling team in the 2013–2014 season. It was a successful season with athletes turning in impressive performances. At the state competition in Mandan, the team performed well, with seven bowlers placing. Coaches help students, like Chase, fine-tune their bowling techniques: “Chase has been involved in Special Olympics for two years now. He practices so hard and has really matured in the sport,” says Denise Jensen, recreational coordinator at the Center. “By working with the coaches, he learned a new way to bowl that worked for him this year, and it was the first time he won a medal at state. He was very excited, as we all were!” Bowling also provides another way for the athletes to be connected to their community: “Developing friendships with others—those with or without disabilities—and being a part of the community is an important part of the program,” says Jensen.


Amanda concentrates during practice, perfecting her skills.

Saige prepares to push her bowling ball down the ramp, while Agnes cheers her on.

Cullen tries to knock the last pin down in bowling practice at the Buffalo Lanes in Jamestown. Joseph looks over to be sure we’re capturing a timeless shot of his perfect form.

Adam pauses to show us his “game face.�

Austin steadies the bowling ball, aiming it towards the pins for the perfect throw.

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M E S S A G E

F RO M

T H E

C EO

Strong roots anchor the Anne Carlsen Center for generations of success We are surrounded by beautiful trees on the Anne Carlsen Center Jamestown campus. They provide shade for outdoor activities, offer shelter from wind, and attract the occasional foraging deer. These trees, growing taller over the decades, are a visual reminder of the passage of time. Younger trees also dot the landscape; more than a hundred were generously donated in 2009 by Otter Tail Power Company. The health of each tree is largely dependent on what we can’t see—the extensive system of roots beneath the surface. These roots anchor the tree, keep it straight and sturdy, and obtain water and minerals from the surrounding soil. The “roots” of our organization have provided a strong anchor for decades of growth. Our roots, however, are not hidden beneath the surface. They are woven into every aspect of our approach to care. Our namesake, Dr. Anne Carlsen, developed the Center—over a career spanning 60 years—into a nationally-recognized provider for individuals with disabilities. Her work and vision continues today; we see it in the smiles of satisfaction … the tears of joy. Born without forearms or lower legs, Anne Carlsen never let her physical impairments prevent her from living a full and active life. She learned to write, feed herself, swim, play baseball and drive a car. Making her education a top priority, she earned multiple degrees, including a doctorate in education from the University of Minnesota. Dr. Anne’s life has been a model for many others with disabilities. She urged them to be undeterred by the challenges in life. “It may take a little longer and it may be more difficult,” she said, “but you can do almost anything if you work at it.” Our namesake had a special talent of helping people view things differently—to see the inadequacies of the status quo and the value of change. She served on local, state and national boards, championing issues of accessibility, education and employment for individuals with disabilities. She was a key voice in the development of major pieces of legislation, including the Americans with Disabilities Act. She was, in many ways, ahead of her time. Dr. Anne passed away on December 22, 2002, but her spirit lives on. She always said, “Independence is the greatest reward a person can have.” Guided by her passion and example, the Anne Carlsen Center exists to make the world a more inclusive place where independence is a gift to all. In the tradition of our namesake, we don’t settle for the status quo. As the Anne Carlsen Center endeavors to make services as accessible as possible, we are now providing support in every corner of the state. We continually seek out the most advanced tools and techniques, and our professionals are tireless advocates for the children, adults and families we serve.

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ACC Recognized for Leadership in Technology We don’t rest on our laurels—the Anne Carlsen Center is continually looking for ways to improve. But even while the Center innovates services and buildings … and adapts to changing needs … our founding principles stay the same. Dr. Anne’s family has played a key role in preserving this rich heritage. Her nephews and nieces—as well as other family members—have helped shape and bring to fruition the priorities of the Anne Carlsen Center over the years. They’ve taken the lessons learned from “Aunt Anne” and applied them to their relationship with the Center—as well as their personal and professional lives. Read the family’s inspirational story on pages 10–11. When Anne Carlsen was born in Grantsburg, Wis., in 1915, the doctor who delivered her predicted that Anne would go on to make a special impact in this world. She fulfilled that prophecy in every way possible. Our challenge—and our great honor, both now and into the future—is to help ensure that individuals of all abilities have the opportunity to share their gifts as valued members of society. Gratefully,

Eric M. Monson Chief Executive Officer Anne Carlsen Center

The late Steve Jobs once said, “The people who are crazy enough to think they can change the world are the ones who do.” You can see that bold philosophy put into practice each day at the Anne Carlsen Center (ACC) … programmed in classroom SMART Boards, mounted atop assistive equipment, and installed on iPads with specialized apps tailored to each client’s educational goals. Through the passionate leadership of our skilled personnel and the innovative use of new technologies, we are truly changing the world for those we serve. In September, the Anne Carlsen Center was once again honored to receive an Apple Distinguished School designation for the 2013–2015 school years. This distinction—awarded to fewer than 200 organizations nationwide— recognizes the Anne Carlsen Center for innovative learning and teaching practices, ongoing professional training, and compelling evidence of success. “Independence is the greatest reward anyone can have,” says ACC Chief Operating Officer Marcia Gums. “We have seen that—through the Apple technologies such as iPads and iPods and all the applications—we can provide the tools to help people with disabilities lead healthy, meaningful and more independent lives.” Education Services Director Michele Well says the Anne Carlsen Center’s vision and goal is to provide an engaging learning environment in which students are excited to learn: “These innovative tools and opportunities have helped provide our teachers with the freedom to take risks and be creative. They teach with an understanding that all children can learn, and students are now more active participants in the learning process.” It takes visionary leadership from the expert personnel at the Anne Carlsen Center to understand what is possible, and to employ the tools that transform the learning experience within the classroom and beyond. Mark Coppin, the ACC director of assistive technology, was selected in November by the Obama Administration as a “Champion of Change” for his groundbreaking work in utilizing technology to access the abilities of special learners. The ceremony was held at the White House, where Coppin was joined by ten other award recipients from across the U.S. to discuss and celebrate the advancements in their respective fields. “This was a once-ina-lifetime experience, and I was extremely honored to be recognized by the White House for our work at the Center,” says Coppin. Gums says the Anne Carlsen Center is proud to have a team member recognized in this way. “Finding solutions for students with diverse learning needs is extremely important,” she says. “It’s about providing students with the opportunities to access their education, their world and their dreams.”


A Social Butterfly Gets Her WINGS

T

he moment Desi Draeger’s eyes

landed on the dress, she knew.

Desi Draeger spends time at the Academy for Children, demonstrating and leading a variety of activities that someone with cerebral palsy can do.

Her shopping partner that day, her mom, was a bit surprised. Cindy had expected her daughter to navigate toward something in yellow—Desi’s all-time favorite color. But one look at her daughter’s beaming smile and pleading eyes told her this dress was the one.

prom. The fuchsia and hot pink

The evening of prom arrived, and Desi looked radiant. The dress was indeed glamorous, but the photos captured something else truly dazzling—Desi’s smile. It’s a smile that has told the world, many times over, that no obstacle can get in the way of her hopes and dreams.

gown, with tie-dye design, was

Overcoming challenges

eye-catching and fun.

Desi, now 26, has faced significant medical challenges since shortly after her birth.

This was exactly what she wanted to wear for her school


When Desi was just 3 days old, she became ill with bacterial meningitis, the inflammation of the outer layer of the brain and spinal cord. The infection was severe and caused neurological damage—specifically, damage to the area of the brain that controls muscle tone and movement—resulting in cerebral palsy. Desi has spastic CP, which affects about 80 percent of people with CP. Those with spastic CP have increased muscle tone throughout the body. Desi has dealt with severe pain due to stiff muscles and the strain on areas of her body that compensate for muscular irregularities. Abnormalities of the hips and spine are often connected to cerebral palsy. When Desi was 3 years old, she had hip surgery, followed by six weeks in a half-body cast. When she was a teenager suffering the effects of scoliosis, surgeons inserted rods into her back to help straighten her spine. Despite the surgeries and the occasional setback, Desi does not let her cerebral palsy define her. A social butterfly, she loves to be out in the community, meeting people and learning more about the world around her. She has a long list of hobbies and friends … and is known for her impeccable fashion sense.

North Dakota. “We weren’t sure how Desi would spend her days,” says Cindy. “At school she had an agenda for the day. What would she do now? Where would she go?” Thankfully, in 2009, the Anne Carlsen Center (ACC)— as part of an expansion of services into homes and communities across the state—had begun providing Community Based Services in the Fargo area. Desi became one of the first individuals to participate in the program. Since then, she hasn’t missed a beat in her very full life! The Center’s Day Support Services help guide individuals over the age of 21 in planning a variety of life areas. Specially-trained personnel help Desi learn self-advocacy skills, gain vocational skills and experiences, participate in leisure activities, and carry out shopping trips. “They take her bowling and to the movies. They do fun things!” says Cindy. “My daughter has a busy life, and that is what she likes. She is such a people person and loves to be on the go. The Anne Carlsen Center gets her out into the community and has filled that important part of her life.” Michele Olson is a direct support professional who has spent four days a week with Desi for the last several years. Olson helps Desi get ready for the day, and then, together, they head out into the community for vocational and recreational experiences. She says that while Desi is skilled at using technology to enhance her communication, Desi’s facial expressions communicate volumes: “When it’s time to get dressed in the morning, she’ll choose her clothes. When presented with different choices, she’ll light up and smile when it’s something she wants to wear. She’ll turn her head away, if it’s something she doesn’t want to wear.”

Desi, 26, enjoys staying busy and meeting new people.

To get from place to place, Desi utilizes a wheelchair, and she owns her own wheelchair accessible van. Because cerebral palsy has affected the muscles she would use for talking, Desi has learned to communicate effectively using facial expressions and communication devices. A West Fargo High School graduate, Desi lives in West Fargo with her parents, Cindy and Darin Viken, and her younger brother, Diondrey. Adaptive equipment around the house helps her do the things she wants to do … and in the case of chores, things she doesn’t especially want to do. On the go! Cindy and Darin, accustomed to their daughter leading an active life, became concerned when Desi finished high school at age 21—the age at which an individual completes special education services in

Olson and other ACC team members who work with Desi say this young woman has a special way of touching the lives around her. “Desi is very intuitive,” explains Abby Anderson, a direct support professional. “She is in tune to how others are feeling at any given moment. I remember how welcoming she was when I started working with her. She made a conscious effort to put me at ease.” Continued, next page


Desi provides vocational expertise at the J.C. Penney salon, vacuuming hair at each styling station. The vacuum is switch adapted, meaning Desi uses her head to tap a switch that starts or stops the vacuum. A wonderful baker, she uses a mixer connected to a head switch to make cookies for visitors to the Hjemkomst Center. Every Thursday at Creative Kitchen, she uses an iPad application with speech generation to greet customers to the store. She also spends time during the week greeting residents at a Bethany senior living community and watering their plants. She shops for groceries and supplies for an Edgewood Vista resident. Desi helps straighten clothes and dust tables at Apricot Lane Boutique in Fargo.

Community connections Desi’s charismatic personality has made her a valuable asset in her community. She fulfills important roles throughout the Fargo-Moorhead area, making friends while gaining a wide variety of vocational skills. An Anne Carlsen Center team member accompanies Desi to each business in the community, assisting with transportation, training, work and communication.

Desi finds time in her busy schedule to help out with clerical work at Easter Seals Goodwill ND. She enjoys reading – using her assistive technology—to children at the Academy for Children and at the YMCA Early Learning Center’s Kinderkamp Preschool. The children love to ask Desi questions, interact with her, and learn about all the things someone with cerebral palsy can do. She also shows them how to play with switch activated toys.

To help ensure that the vocational opportunities are the best fit possible for Desi, her family vocalizes her interests, passions and dreams. “Her parents have always said they want their daughter to be able to spend The Center pays close attention to a client’s interests time with people her and strengths when pairing individuals with busiage,” says Danielle nesses. Because Desi is very fashion savvy, working Remmick, the at Apricot Lane Boutique in West Acres Shopping operations Center has been a natural fit. Desi spends manager for about an hour each week dusting tables ACC Community and jewelry counters, and also helping Based Services straighten the clothes. in the Fargo area. “North Dakota State “Desi is very fashionable; she wears the University helped us cutest clothes,” says Jeanie Anderson, come up with some ways owner-manager of Apricot Lane Boutique. to make this happen. Desi “I’m thankful for her help with the dusting, is now involved with planning because the tables can get dusty quickly.” a variety of student activities; Cindy Viken she then participates in those events.” Anderson says she is honored to be connected ACC’s Krysta Ronning accompanies Desi to in this way with the Anne Carlsen Center’s NDSU for these vocational and social experiences. Day Support Services. “In my former profession, Ronning, who is about Desi’s age, fixes Desi’s hair I worked with individuals with disabilities. in a “funky” style and helps her put on all of her I also have individuals in my family with disabilities,” NDSU Bison gear. she explains. “All individuals need to have purpose in their day … an opportunity to do something There’s never a dull moment – just the way productive. Even if they can’t always communicate Desi likes it! it, they feel good about making a difference.”

My daughter

has a busy life, and that is what she likes.


“This is Desi’s life” While ACC personnel support Desi in her full life, they find ways to help her lessen the stiffness in her muscles and joints, and improve her range of motion. Once a week, a staff member accompanies Desi to the YMCA, where she spends time with friends in the accessible pool. Comfortable in the water, Desi always looks forward to the summertime, when she and her family spend as much time as possible at Otter Tail Lake in Minnesota. In addition to “chilling” at the lake, she helps out on Monday mornings at the restaurant Guzzlers, a hangout for Desi and others her age, by wiping down the menus. With determination in her eyes, Desi is constantly amazing those around her, as she takes on challenges and achieves success in many areas of her life. “This is Desi’s life, and it’s about what she wants,” says Brittany Schaffer, Desi’s program coordinator. “It’s always about Desi … every day.” It’s an approach for which Desi and her family are extremely thankful. They say that, over the last four-and-a-half years, the Anne Carlsen Center has become a vital part of their lives. “The Center has the experience — with their personnel, programs and equipment — into which we can tap. They are a big resource!” says Cindy. “All of the caregivers have become part of our family. They are wonderful people … definitely one of God’s blessings throughout this journey.”

Congratulations, Kaila As the 2013-2014 school year winds down, 21-year-old Kaila is eagerly preparing to celebrate her graduation. The Anne Carlsen Center (ACC) student is the only member of the 2014 graduating class at ACC. Enrolling in 1999, Kaila has been a busy, active member of the student body at the Anne Carlsen Center. “Kaila belongs to hobby clubs, has been a student council officer, and attends chapel … she enjoys being engaged and is very involved in what’s going on,” says teacher Gloria Jones.

21-year-old Kaila will graduate this May from the Anne Carlsen Center.

With a big smile on her face each day, Kaila enjoys gaining knowledge and developing skills. Her favorite class is English Language Arts. She enjoys listening to music and stories as well as keeping up on current events. “Twice a week Kaila does vocational work at a church in town [Jamestown],” says Jones. “She does office tasks like paper shredding and cutting.” Using her head switch and switch activated office equipment, Kaila is able to complete tasks that would normally require muscle movement she lacks. She fulfills her responsibilities alongside church staff, and enjoys contributing her talents. Kaila has enriched the lives of many students and staff at the Anne Carlsen Center since she enrolled 15 years ago. “She’s quiet, but she can get so excited. She can hoot and holler with the best of them!” says Jones with a laugh. Linda Knutson is Kaila’s grandmother, known around the Anne Carlsen Center as “Grandma Linda.” Knutson has observed, in countless ways, the way her granddaughter brings joy to those around her: “She’s always a happy camper! She’s so upbeat; her eyes light up when she’s excited about something.” Kaila may move to Fargo upon graduation. She is still considering her options in terms of future plans. Grandma Linda and team are busy planning Kaila’s graduation festivities. This year’s graduation ceremony will take place in the ACC auditorium on the Jamestown campus on May 23 at 2 p.m. The ceremony will be followed by a reception in the nearby pool atrium. “The years at Anne Carlsen Center have been such a blessing,” said Knutson. “It’s been a great experience for us.”

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M

t’s more than a toddler can resist. Her mother’s cell phone is within reach … and seconds later, she is holding the phone to her ear, very purposely. She’s seen this done before. She knows to listen carefully one minute, respond the next. There’s no caller at the moment, but that doesn’t matter to Molly. She laughs a sweet laugh, then looks at those in the room to see if they are watching. Delighted to have an audience, she continues making animated expressions while holding the phone to her ear. Molly’s parents, Becky and Paul Butenhoff, watch their daughter’s antics with a smile. This moment of playfulness is a poignant reminder to the couple of how far their daughter has come. Search for answers Molly entered the world on May 31, 2012. Born at 36 weeks, she was considered premature. “Late preterm” infants, born between 34–37 weeks gestational age, often look like full term babies but may still face some problems associated with prematurity. Two days after Molly was born, the Butenhoffs brought their baby girl home from the hospital. They experienced the joy and exhaustion that accompany those first weeks at home with a newborn. There seemed to be no sign of problems associated with their daughter’s early birth.

Becky’s cousin did notice some issues. And Becky’s sister, who made some of the same observations, urged the family to get Molly screened for developmental concerns. In December 2012, the Butenhoff family was put in touch with the Early Intervention Program at the Anne Carlsen Center (ACC).

Expert guidance The ACC Early Intervention Program is designed to provide parents, family members and other caregivers with the support, instruction and resources needed to help maximize a child’s learning and development. Therapists and educators provide services in the child’s home because infants and toddlers are most secure and learn best with familiar adults in a familiar setting. Early Interventionist Annie Schlecht worked with the Butenhoff family in their Jamestown home to help Molly gain strength and coordination in daily activities. Schlecht, during the course of 11 months, identified deficits in Molly’s motor skills, and then shared creative ways for the family to facilitate movement in the natural environment. “Annie was wonderful to work with,” says Paul. “She is very detailed. We learned what we should be teaching our daughter to help her do her best.” Schlecht’s specialty is occupational therapy. The Butenhoffs also benefitted from other experts within the Early Intervention Program, including a physical therapist and a speech therapist. “We don’t expect the parents to be therapists,” says Schlecht. “We encourage them to help their child develop skills during the family’s daily activities and routines.” Schlecht developed intervention strategies that were tailored to the Butenhoffs’ priorities and needs. She helped turned daily routines into learning opportunities, and showed the family how to make the most of the materials and toys in the home.

MARVELOUS MOLLY Jamestown toddler, family have ally in transforming weakness to WOW!


As a result, Molly gained strength in a wide range of gross motor skills—those that involve larger muscles, like those in the arms, legs or torso. For a long time, her only method of moving from place to place was by rolling. Schlecht worked with the family to help Molly progress to crawling. Later, the Early Interventionist used items like a toy shopping cart and a small standing keyboard to aid in support and balance as Molly made the transition to standing. It wasn’t long before Molly was taking a step or two between pieces of furniture. Food has proved to be a good motivator for Molly as she develops fine motor skills— those that involve the smaller muscles, like those in the hands, wrists and fingers. For instance, while Molly was seated at her highchair, Schlecht spread out Cheerios cereal on the tray; Molly reached for and then picked up the Cheerios before happily placing them in her mouth.

evaluators there said Molly’s staring episodes were not due to irregular brain activity. Just a few days before Molly turned 1 year old, her little sister Ava was born, which added a sense of urgency to the family’s desire for Molly to become more independent in her motor skills. “We were hoping that Molly would be able to sit independently by the time her sister arrived,” says Becky. “Thankfully, with all of the tools that Annie gave us, and all of the work everyone put in, it was at around that time that she had developed enough strength to do that.” A strong foundation

The Butenhoffs say the Anne Carlsen Center’s Early Intervention Program was especially helpful, given that Molly is their firstborn. Being first-time parents can be challenging enough; dealing ACC’s Annie Schlecht works with Molly Butenhoff to help with the developmental delays improve the little girl’s gross motor skills. Molly’s mom, Becky, participates in the session, cheering on her daughter. could have added a lot of additional stress. They say the “There were some issues that we didn’t notice until support provided by the program gave a big boost to their Annie pointed them out,” says Becky. “We are with confidence and competence as Molly’s primary teachers. Molly every single day, so there were things we had become accustomed to that were actually “It is a great program,” says Becky. “We had no probdevelopmental issues to address.” lems asking questions, even if it was maybe a silly question. It’s huge to have access to that background A reliable resource and support.” As an infant, Molly—because of her motor delays— wasn’t able to lift and turn her head the way other babies In November, the Butenhoff family moved from Jamestown to Moorhead, Minn., after Paul’s father suddenly do. She spent a lot of time on her back, eventually depassed away. Moving back to Moorhead (where they veloping brachycephaly with plagiocephaly (also known had lived prior to Jamestown) made it easier to meet as flat head syndrome), caused when a baby’s soft and various family obligations that arose after Paul’s rapidly-expanding skull becomes flattened in one area father died, including overseeing the estate. due to repeated pressure on that part of the head. The Early Intervention Program encouraged the family to discuss their concerns with Molly’s doctor in order to obtain direct physical therapy and a cranial remolding orthosis, a helmet that promotes more symmetrical skull growth. Schlecht also worked with the family on positioning techniques and helped stretch the muscles in Molly’s neck that had become tight from inactivity. When Molly’s parents noticed their daughter was staring for long periods of time, they feared she might be having seizures. ACC arranged for an evaluation at an epilepsy center in Minnesota. Thankfully, the

In February, they began the process of resuming services for Molly, having an evaluation to determine her current needs and interviewing agencies that provide early intervention services in Minnesota. Molly turns 2 in May. Her parents, equipped and empowered, are giving their daughter as strong a start as possible. While she has made so much progress already, many of the dividends will show up later. With each day, Molly’s foundation for the future grows stronger and deeper ... ready to support a lifetime of success.

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A

lfred Carlsen was a man in tune with God’s creation. A gardener by trade, he had a knack for spotting beauty and potential. He knew, perhaps more than others, that people and gardens have something in common: they reflect the caliber of care they receive.

(Front Row) Jim Carlsen, Dr. Anne (Back Row) Don and Nancy Carlsen Stanger, Ken Carlsen, Albert Carlsen.

a second mother to her.

A L W A Y S

Anne’s four brothers— including Albert, Nancy and Ken’s father—were a constant source of encouragement and advice. Even after they all grew up and moved to different parts the country, Anne knew she could always count on her brothers.

So, when he first held his newborn daughter Anne, he said, “We Carlsen family remains dedicated “Our father would visit thank God for this new to keeping the vision and memory Anne at least once a year,” life. We shall wrap our recalls Nancy. “They of the Center’s namesake alive love around this little talked on the phone quite girl and do everything a bit. Many times she would call him, [as well as her we can to bring happiness to her. I think God has someother brothers] before making a major decision.” thing in mind for her.” His words proved true in countless ways. Anne Carlsen, born without forearms or lower legs, lived a life that drew more attention to what she could do … than to what she couldn’t. As a child, she amazed her hometown of Grantsburg, Wis. As an adult, she amazed the world. Family ties Anne was the youngest in a family of six children. Her parents treated Anne just like her older sister and four brothers. “She was expected to do chores, just like everyone else,” says Anne’s niece, Nancy Stanger. Nancy and her brother, Ken Carlsen, say their grandfather (Anne’s father) was the dominant force in shaping Anne’s upbeat and determined approach to life. “Grandpa was the one who nurtured Anne’s independence the most,” says Nancy. “He devoted his life to her wellbeing.”

Anne, who had long desired to teach, was hired as a teacher in 1938 at The Crippled Children’s School in Fargo, which moved to Jamestown in 1941. She was later promoted to principal, and eventually became the school’s administrator. In the meantime, she completed her master’s degree at the University of Colorado in Greeley and her doctorate in education at the University of Minnesota. Dr. Anne guided the school to a position of national prominence, championing issues of education and employment of individuals with disabilities. In the process, she received countless honors and awards. In 1980 the name of the school was changed to the Anne Carlsen School (now, the Anne Carlsen Center). The next year Dr. Anne officially retired but continued to serve as a consultant and mentor.

Anne’s father had resolved that she would go to school; he was a constant advocate for her education. In bad weather, he took her to school in her wheelchair or on a sled. Anne, gifted with a keen intellect and encouraged by her family, was an excellent student who thought “school was the greatest thing ever invented.”

In 2001, multiple generations of Carlsens converged, along with many others, on Jamestown to help Dr. Anne celebrate an important event in the history of the Center—and her life. It was the 60th anniversary of the Anne Carlsen Center, the organization to which Dr. Anne had dedicated a lifetime.

The Carlsen family was close-knit. Anne and her older sister, Clara, shared a special bond—especially after their mother died when Anne was only 4. Clara became

“It was an amazing day. I was honored to be there to celebrate her life’s work,” says Ken. “She was the driving force of the Center – an incredible asset. She taught so


many people that disabilities can’t hold you back.” That next year, on December 22, Dr. Anne Carlsen passed away at the age of 87, leaving a legacy of hope and empowerment that would continue to touch lives. Honoring “Aunt Anne” Albert, his children say, was determined to outlive Anne, so that he could always be there for his sister. He succeeded, outliving her by more than five years. Albert Carlsen passed away on Feb. 6, 2008. “Our father always felt responsible for Anne,” says Nancy. One of the many ways he looked out for his sister was by giving her investment advice pertaining to the Anne Carlsen Center for Children Endowment Fund, the donor-advised fund she established to benefit the Center. “She gave nearly every penny she earned back to the Anne Carlsen Center,” says Nancy. “Our dad was financially savvy and helped her make good investments with that money.” Nancy and Ken are on the advisory committee for the Anne Carlsen Center for Children Endowment Fund, which is managed by the North Dakota Community Foundation. They help decide the size of the grants given each year to the Center and which specific projects the funds will support. “We, as an advisory committee, get together to decide what we feel Aunt Anne would have wanted the money to go toward … what she would have viewed as important,” says Ken. Until recently, their cousin Don was also a member of the advisory committee. Dr. Donald Bunker Carlsen of Midland, Mich., died Dec. 4, 2013, at the age of 79. Don, an orthodontist, was the son of Richard (“Dick”) Carlsen, one of Anne’s four brothers. “Don was a strong supporter of the Center,” says Anne Carlsen Center CEO Eric Monson. “In addition to his monetary gifts, he consistently showed a deep appreciation and interest in the activities of the Center. He would frequently call to discuss our new programs.”

The Carlsen family has also shown a keen interest in the Center’s use of technology, including iPads and SMART Boards, to equip and empower students. “Ken and I have both been in the business field,” says Nancy. “We recognize the importance of technology. It was also important to our Aunt Anne. She would have been so excited to see the kids today, as they use these devices to communicate and complete tasks they had never before been able to do.” Nancy, the family’s historian, has spent countless hours compiling scrapbooks about her aunt. These albums, which include Dr. Anne’s personal photos and keepsakes of both her personal life and career, are housed in the Anne Carlsen Center library. “Our father was concerned that when his sister passed away, people would forget about her,” says Ken. “But the Center is still there, and our aunt’s connection with it is still remembered and honored.” Personal impact Dr. Anne’s legacy includes the impact she made over her lifetime on members of her own family. Because of his aunt, Ken says, he automatically focuses on people’s abilities – not on what they can’t do. “My wife of 36 years, Rena, was born blind,” he says. “I think a large part of why her blindness was never an issue for me was because of my Aunt Anne. I wasn’t scared by disabilities … in fact, I didn’t really notice them.” Nancy, whose middle name is Anne, says her aunt’s legendary determination has been an inspiration to every member of her family: “When my grandchildren get discouraged, I tell them about my Aunt Anne and her perseverance against all odds.”

This year Dr. Anne would have celebrated her 99th birthday. Over the last century, her life story has challenged Anne with her sister, Clara, people to see things differently and to and their father, Alfred. care more deeply. “What we want most,” says Nancy, “is for people to help keep her dream alive for many more years to come.”

Over the years, the advisory committee has chosen to dedicate funds to—among other programs and projects —the gardening program and the building of the three cottages on the main campus.

To learn more about the life of Don Carlsen and his dedication to Dr. Anne’s legacy, visit annecarlsen.org/Don-Carlsen or scan the QR code.


N

orth Dakota is getting a lot of attention these days due to the copious amount of oil beneath the surface. But another valuable and viscous liquid has captured the attention of Rick and Janet Ennen, who live near Bismarck in the community of Menoken. Think sweet … and instead of oil wells, bee hives. That’s right—honey! In fact, North Dakota leads the nation in honey production. In 2012 there were, according to the U.S. Department of Agriculture, more than 34-million pounds of honey produced in the state. Rick and Janet are big consumers of North Dakota honey—they order it in 60-gallon drums. The Ennens are winemakers, and their specialty is making honey wines. They are owners and operators of Apple Creek Winery.

which the bees gathered the nectar. “The Coneflower honey wine has a floral finish in the mouth and nose. It’s a lot like sniffing a flower—a very sensory experience,” says Rick. “The Cranflower honey wine, in contrast, has a finish with a tartness that leaves the tongue tingling.” The Ennens use pure, raw honeys in making their wines. They primarily select North Dakota honey and blend in single source varietal honeys from inside and outside the state. The Apple Creek Winery has the capacity to produce 1,500 gallons of BEARPAW honey wine per year— equivalent to 7,500 bottles. With every drop, the Ennens are doing more than providing a feast for the senses; they are also fulfilling a special mission.

Art and science Making honey wines requires a lot of patience and technical precision. The Ennens have enjoyed the challenges of transforming honey into wine, spending many hours developing formulas and processes. Using computerized methods, they carefully monitored the wines during fermentation. They explored the large “library” of wine yeasts, eliminating less desirable ones, and eventually determining their favorite. “We are purists,” says Rick. “We love what we do.” The Ennens made their first honey wine in 2009. In 2011 they obtained their state and federal licenses, and built their wine production facility in Menoken. In 2013, they did their market testing and started selling their products at special events around North Dakota. The Ennens are members of Pride of Dakota, which provides resources for businesses that make a final product in the state. These winemakers have established the BEARPAW brand of honey wines, which range from dry to semi sweet. With names like Cranflower, Prairieflower and Coneflower, each honey wine the Ennens make provides a distinct aftertaste or “finish” that is reminiscent of the wild flowers from

Bismarckarea couple is on a mission to touch lives while pleasing palates


Spirit of giving Seven years ago, the Ennens met Missy and Jay Brademeyer of Fort Ransom through shared hobbies. The Brademeyers’ son, Cade, had been diagnosed two years prior with autism, a neural development disorder characterized by social and communication impairments as well as restricted and repetitive patterns of behavior. The family of four was stressed out and overwrought with emotions. Then, in 2008, Cade and his family began receiving services from the Anne Carlsen Center (ACC). Cade began making improvements in his ability to communicate and interact with others; the family benefitted from the wealth of ACC expertise. The transformation made a big impression on Rick and Janet: “We have watched their metamorphosis as a family. The stress levels are way down and the level of communication is much better. We are so impressed by the positive impact the Center has had on the entire family.” Witnessing the Brademeyers’ journey to a greater quality of life was pivotal for the Ennens, as they viewed their own goals for the future. While becoming winemakers has provided exciting opportunities for learning and self-expression, their primary goal was to develop an enterprise that would allow them to give generously to charitable causes long after retirement. “When it comes to the second half of your life, a person stops to think about how they are going to occupy the remaining years,” says Rick. “This work gives us a purpose. We want to do something that is greater than earning a paycheck … something that is bigger than ourselves.” Rick and Janet, touched by their friends’ story, have chosen the Anne Carlsen Center as their charity of choice, committing 100 percent of the winery’s net retail sales to the Center. “We are thrilled that there is an organization like the Anne Carlsen Center in North Dakota. It’s exciting to see how the organization has grown across the state.” In addition to financial giving, the Ennens attend and help with ACC events. They have also donated silent auction items. “By their example, they teach everyone who comes in contact with them to have a more generous spirit,” says Michelle Walker, ACC associate development director. “They give time, money and love. They have found many ways to make an impact.” Rick is partially retired from his position at an engineering firm; he consults with the company on special projects and is also involved with the board

of directors. The winemaking operation keeps him and Janet busy, as they work to build up their inventory while maintaining strict quality standards. Their 27-year-old son, Christian, also plays a role in the winery, running the corker and helping with bottling. “When some of the work with the winery starts to feel like drudgery,” says Janet, “my incentive to keep going is thinking of the children at the Center.” On the grow The Apple Creek Winery production facility houses large stainless steel tanks, including 2,000-liter tanks for aging the wine and 1,000-liter tanks for fermentation. There also is a corker, labeler, water filtration system, bottle washer/sanitizer and quality control area. The winery operation also includes 635 acres of land in the Turtle Mountains, a few miles northeast of Bottineau. This area includes Bear Butte, Bear Lake and Bearpaw Lake – landmarks which inspired Rick and Janet to brand their honey wines as BEARPAW. This past year the Ennens harvested a crop of wild chokecherries on their property to use in wine production. The chokecherry wine will be available this summer. Also new this year is their Almondflower Wine, made with North Dakota wildflower honey and California almond flower honey. This will be the Ennens’ second summer promoting their honey wines in North Dakota. They will be offering tastes of and selling their products at a variety of Bismarck events including Applefest, Urban Harvest and BisMarket. You can also purchase their wines through their website at www.bearpawwine.com. The Ennens will build a wine tasting room this summer. Their new building will contribute more than 2,000 square feet of space for BEARPAW honey wine tasting, sales and storage. In addition, they plan to partner with other honey-related entrepreneurs, selling those products in their wine tasting room. They also plan to invite artists periodically. Rick and Janet say their contributions to the Anne Carlsen Center align with their Christian faith. In everything they do, they try to be sensitive to the needs of others, offering compassion to those who are not always able to speak for themselves. “The Ennens are an inspiration to us all,” says Walker. “They think outside the box, while making a large impact. They are quietly and humbly generous.”


R

oller skating was a popular pastime in the 1960s, and Art Henke wanted to provide Jamestown residents with a place to enjoy it. He established Art’s Rollarena, which was a hit from the start.

the rink was exciting. “My dad allowed the wheelchairs on the floor, so we all would dance in a circle to songs like the ‘Hokey Pokey,’ spinning the chairs around,” recalls Ann. “You could tell the students loved it.”

The roller rink was a family operation, and Art’s wife, Esther, and their children helped out. Annetta (Ann) Knecht, one of the couple’s daughters, spent a lot of time at the Rollarena and cherishes her memories from that time. “There were always around 300 skaters on a Friday evening,” she remembers. “If there were only 75–100 skaters, it was a slow night!”

Continuing to care

On nights when the football or basketball team was playing, the Henkes would skate to the back room—where the game was playing on the radio—to hear the score and then announce it over the loudspeakers. “You can’t imagine the cheers,” says Ann, “people would be stomping their feet and yelling!”

Mending became a big part of Ann’s afternoon and evenings, as she remembers two 30-gallon garbage bags full of clothes, bibs and stuffed animals. “I remember once there was a child’s teddy bear with a rip by his heart,” recalls Ann. “I patched it up with a heart patch and put a BandAid over it. I included a note as a reminder to be careful, as the stuffed animals rip so easily!”

Through the years, Ann has continued to find ways to make an impact for the children of the Anne Carlsen Center. She began a sewing project with her good friend, Joanne Geinert, who knew she did some sewing and asked for her help. The beneficiaries of their skills were the students of the Anne Carlsen Center.

Annetta (Ann) Henke and Gary Housh were master of ceremonies and disc jockey for the Valentine’s Day party of 1968.

In addition to providing familyfriendly entertainment, the Henkes wanted to give back to their community. The family hatched a plan to show their love for the Anne Carlsen Center—at that time called The Crippled Children’s School—during the Valentine’s Day party in 1968.

Ann also found ways to be involved with the Anne Carlsen Center with her own family. She and her three daughters participated in and assisted with Dr. Anne Carlsen and Walt Hall the Center’s Girl Scouts troop. accept the donation from Art Henke, “My daughters loved it! They owner of Art’s Rollarena. “My dad let me coordinate the were as comfortable as if they party, and the biggest thrill of the [the Anne Carlsen Center afternoon was when Dr. Anne came students] were their own sisters,” says Ann. there with Walt [Hall, the foundation director], and we presented them with the check,” remembers Ann. “Then we did a skate show for them!” In addition to making a financial impact for the Anne Carlsen Center, the Henkes found special ways to bring joy to the lives of the Center’s students. On Sunday afternoons, the students would arrive by bus to the roller rink to enjoy an afternoon of music and laughter. Art Henke made sure that every minute on

When asked about the Center students and clients, Ann—who now lives more than an hour away from Jamestown in the town of Napoleon—says she misses them dearly. By spending time with them for all those years, she learned some important lessons that have touched many aspects of her life: “Once you learn how to be a friend, it just comes natural the next time.”


“The generosity we experienced on this year’s Giving Hearts Day was incredible,” says Patrick Kirby, Chief Development Officer at the Anne Carlsen Center. “Throughout the day, we were getting calls and emails from supporters so excited about participating and cheering the Anne Carlsen Center on from all over the United States!”

Giving Hearts Overflowing Thanks to an incredible outpouring of generosity and support, the Anne Carlsen Center (ACC) reached—and surpassed—the goal of $100,000 for this year’s online fundraising effort known as Giving Hearts Day. Giving Hearts Day, the largest single fundraising event in North Dakota, fell on February 13 this year, and ACC was once again selected by Dakota Medical Foundation and Impact Foundation to participate.

Christmas Wishes Come True! It was a very special Christmas for the children and young adults served by the Anne Carlsen Center. You received their Christmas wish list in the mail, and responded with an unprecedented level of generosity! Donors gave a combined total of nearly $100,530. This wish list contained no mention of toys, sports gear, video games or movies … but instead, requested the latest tools and technology to help students overcome challenges, be more comfortable, and achieve greater independence. Items on the list included a Telepresence Robot, which enables students to be in two places at once! Children and adults who are not feeling well enough to leave their room at the Center will use

We are grateful for your donations, and for your help in spreading the word about this special fundraising opportunity. You have played an important role in providing lifechanging services to children, young adults and families all across North Dakota. Thank you from the bottom of our hearts!

Here are some highlights from an unforgettable day of giving: • More than $120,000 raised • More than 470 individual donors • 6th highest in fundraising amongst nonprofits participating in Giving Hearts Day • Donations from more than 20 states • Donations from as far away as Perth, Australia and Tokyo, Japan • Contributions of $10 or more were matched by friends of ACC

this remote-controlled robot to participate in classroom activities on the other end of campus and “travel” to innumerable other locations. You’ve also helped fulfill important medical equipment needs like the AccuVein, which uses vein illumination to make it easier to find a vein for drawing blood and performing IV insertion. Extremely lightweight, it accommodates movement and shows veins in real time. Our medically-fragile students will benefit greatly from this technology. Your gift of love this past Christmas is making a meaningful difference for all of the individuals we serve here at the Center. Thank you for the generous way you have helped provide important medical and educational tools that will promote growth, development and achievement in the lives of many!


Dr. Anne Carlsen’s legacy is the enduring belief in the worth of every individual. Her life exemplified strength and nurturing, advocating for individuals with disabilities, and teaching them how to create their own path towards

Amazing Allan Allan Stavem is accomplishing what some once thought impossible. Born 17 weeks early, he has struggled with complications from underdeveloped organs and undergone numerous surgeries. But each day brings new victories for this 5-year-old Jamestown boy. Allan is the star of our Winter Appeal, which arrived in homes at the end of February. We are honored to share this amazing boy’s story with you. Allan’s family is grateful for the way the Anne Carlsen Center—supported by donors like you!—has come alongside them, customizing services to meet their needs and dreams. “Now we have someone who sits down with us and says, ‘This is how you work on this.’ We’ve made phenomenal gains, as a result,” says Allan’s mom, Jennifer. If you have already responded to our Winter Appeal—thank you! If not, consider making a gift today. The programs, services and specialized equipment that make the Anne Carlsen Center unique are not fully funded by government programs or insurance reimbursement. With your tax-deductible contributions, you help us continue to meet important and diverse needs across the state. Thank you for the love you show Allan and all his friends. You are empowering children and young adults to defy the odds and reach their full potential!

independence.

Just as there are many different ways we serve individuals at the Anne Carlsen Center, there are almost as many methods of giving to support our life-changing mission. For more information on how you can make a planned gift in honor of the individuals we serve, contact Patrick Kirby, Chief Development Officer at 952-237-0836 or at patrick.kirby@annecenter.org annecarlsen.org/how-to-help


Board of Trustees Tim Flakoll Fargo, N.D.

Sue Offutt, Ph.D. Arlington Heights, Ill.

Joel Fremstad Moorhead, Minn.

Thomas Rohleder Fargo, N.D.

Harvey Huber Vice Chair Jamestown, N.D.

Janet Seaworth Secretary Bismarck, N.D.

Bruce Iserman Chair Fargo, N.D.

Pat Traynor Immediate Past Chair Fargo, N.D.

Pat McCullough Treasurer Edina, Minn.

Reesa Webb Englewood, Colo.

Robert Montgomery, M.D. Fargo, N.D.

Myra Quanrud, M.D. Ex Officio Jamestown, N.D.

SENIOR MANAGEMENT

O u r C o m m u n i t y Pa r t n e r s

The Anne Carlsen Center has partnered with area businesses who share our passion for empowering children, adults and families to lead lives of greater independence and hope. These Community Partners are helping continue the legacy

Eric Monson Chief Executive Officer

Sam Brownell Information Technology Director

Marcia Gums Chief Operating Officer

Patrick Kirby Chief Development Officer

of our namesake, Dr. Anne Carlsen. We

Allan Hartmann Chief Financial Officer

Kresha Wiest Director of Management Systems

are extremely grateful for their commit-

Margie Johnson Human Resource Director

development Department — 701-952-5167 Patrick Kirby

Rachel Schafer

Chief Development Officer

Development Operations Coordinator

patrick.kirby@annecenter.org

rachel.schafer@annecenter.org

Jeannie Camarillo

Naomi Grueneich

Associate Development Director

Development Systems Coordinator

jeannie.camarillo@annecenter.org

naomi.grueneich@annecenter.org

Michelle Walker

Logan Little

Associate Development Director

Communications Manager

michelle.walker@annecenter.org

logan.little@annecenter.org

Felicia Sargeant

Brittany Lipetzky

Associate Development Director

Development Coordinator

felicia.sargeant@annecenter.org

brittany.lipetzky@annecenter.org

the ambassador Published by: Anne Carlsen Center 701 3rd St. N.W., P.O. Box 8000 Jamestown, ND 58402 1-800-568-5175 www.annecarlsen.org

Notice of NonDiscrimination Policy: Anne Carlsen Center does not discriminate on the basis of race, color, national origin, age or disability in employment or services.

Brenda Tappert, Editor brenda.tappert@annecenter.org

If you would like to be removed from our mailing list, please call 1-800-568-5175, ext. 167.

Logan Little, Assistant Editor logan.little@annecenter.org

Eco-friendly Ambassador Brittany Lipetzky, Assistant Editor The Forest Stewardship Council brittany.lipetzky@annecenter.org logo you see here means we are printing The Ambassador on an Paul Johnson, Designer environmentally-certified paper. paul@pauljohnsondesign.com Each page has a 10% postThe Ambassador is mailed, consumer waste content, and free of charge, for supporters the inks utilized are Soy Inks. of the mission and vision of the Anne Carlsen Center. On the Cover: Desi Draeger, 26, enjoys playing the piano and drums during a time of musical enrichment provided by the Anne Carlsen Center.

ment and compassion.


Non-Profit Org. U.S. Postage PAID FARGO, ND Permit #684

701 3rd St. N.W. P.O. Box 8000 Jamestown, ND 58402 www.annecarlsen.org

Early Interventionist Annie Schlecht works with Molly Butenhoff on developing the toddler’s motor skills by turning playtime and daily routines into learning opportunities. Molly, who was born premature, has faced significant motor delays as a consequence of her early birth. Anne Carlsen Center’s Early Intervention Program, a home- and family-based approach, has helped improve the quality of life for every member of the Butenhoff family. Read their inspiring story on pages 8–9.

Connect with the Anne Carlsen Center on Facebook Become a fan, learn about upcoming events, and share your memories with fellow friends of the Center.

The Ambassador: Spring/Summer 2014  

Desi’s Dreams: West Fargo woman isn’t missing a beat in the symphony of her life.

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