Spring/Summer 2015 www.annecarlsen.org
For supporters of the mission and vision of the Anne Carlsen Center
In the water or on land, 3-year-old Gage Seckerson is really going places PAGE 4
Hope for the Future Bismarck family gains greater quality of life via Autism Services PAGE 10
“The Specialists� Adults with autism are filling valuable roles at Fargo tech companies PAGE 13
On the Go New tool provides a fun way to introduce power mobility PAGE 14
Big Hearts Young trio rolls up sleeves to help children with disabilities PAGE 15
W Austin S. enjoys playing sled hockey for the first time.
Cullen E. smiles for the camera immediately after receiving his two 3rd place medals.
hen the mercury dropped, the fun didn’t stop! The individuals served by the Anne Carlsen Center took advantage of the snow and ice this winter to spend time with friends, enjoy some exercise, and sharpen their skills!
There was also fun on the slopes! Anne Carlsen Center students savored the snow while skiing and tubing at Bottineau Winter Park. The outings were hosted by Annie’s House and made possible through the adaptive recreation program managed by the Center.
Mandan-based Dreams in Motion provided some of our students with the opportunity to try sled hockey, a sitdown version of ice hockey for players with mobility limitations. Students learned the basic skills of the sport and then played their first hockey game. It was a rare opportunity to experience this relatively new sport, which became an official event at the 1994 Lillehammer (Norway) Paralympics.
Ready, get set, SNOW! Two of our students were top finishers in snowshoe racing events during the Special Olympics State Winter Games at Bottineau Winter Park. They each received two medals and were included in coverage of the event by the local media. We are so proud of our athletes!
Joseph B. skates gracefully across the ice in an aluminum sled mounted on two skate blades.
Joseph B. speeds toward the finish line in one of his snowshoeing events during the Special Olympics 2015 State Winter Games.
Joseph B. takes his place on the medal stand for 1st place in the 100-meter snowshoeing race.
Adam W. smiles at his teammates, as he plays his first game of sled hockey.
Focused on the finish line, Cullen E. (left) races toward a 3rd place finish in his snowshoeing event.
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Strengthening individuals, families and communities across the state Gage Seckerson is a pint-sized warrior. With bravery and determination, this 3-year-old rural Jamestown boy daily faces the difficulties associated with a complex genetic disorder. Gage and his family benefit from our In-Home Support services, as well as outpatient therapy services and education services on our Jamestown campus. Constant communication and collaboration between the professionals providing these services helps ensure the highest quality of care. You’ll see, on pages 4–7, why the Seckersons say, with the Anne Carlsen Center as an ally, the possibilities are endless. Our team of professionals, representing a variety of disciplines, helps individuals with disabilities and developmental delays achieve success in many aspects of life. While we continue to offer vital services on our Jamestown campus, most of our growth in recent years has been in the area of Community Based Services. The Anne Carlsen Center (ACC) currently provides services to more than 1,800 individuals and their families across North Dakota in communities of all sizes. We are dedicated to reaching families where they are, in the places with which they are most comfortable and familiar. A 2007 study commissioned by the ACC Board of Trustees identified a critical need across North Dakota in the area of autism services. According to Centers for Disease Control and Prevention (CDC) estimates, 1 in 68 children in the U.S. has been identified with an Autism Spectrum Disorder (ASD). ASD is nearly five times more common among boys (1 in 42 boys). The Anne Carlsen Center was the first organization to offer communitybased Autism Services across the state. There are 21 communities in which we provide these services, with that number quickly growing. Services are tailored to address the needs and dreams of each person and family. The Keller family (story on pages 10–11) receives our Autism Services in their Bismarck home and at many other locations in their community. Four-yearold Coulter, who was diagnosed with autism at age 2, has made dramatic gains in his daily living, communication and social skills, as a result. Our services impact every member of the family, and for Coulter’s parents, Sarah and Michael, and younger brother, Caleb, their quality of life has increased significantly.
Coulter and his younger brother, Caleb.
The story of the Anne Carlsen Center is legendary…
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nd, as with most epic tales, it begins with an extraordinary figure—Dr. Anne Carlsen. Dr. Anne’s life-long commitment to empower individuals with disabilities set in motion an inspired quest to make independence a gift to all—a banner our experienced team of professionals carry forward each day for the individuals and families we serve throughout North Dakota.
Gratefully,
Eric M. Monson Chief Executive Officer Anne Carlsen Center
Bolstered by an innovative online crowdfunding platform that enabled donors to create their own “Houses” to help raise awareness for the event
Thank you for your faithful support of our programs and services! You help us meet critical and diverse needs in every corner of the state. Because of you, individuals and families are equipped and empowered, and the communities in which they reside benefit from their strength. Thank you—on behalf of all those our services touch—for your unwavering compassion and generosity.
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—and promoted with a series of fantasy tales featuring members of the ACC family in a magical world of dragons and castles—the “Game of Donors” was a royal hit. From Bottineau to Fargo, medieval banners representing each Anne Carlsen Center office location flew proudly, as our team members and the individuals we serve worked around the clock, encouraging donors to give. The ACC Development team stood shoulder-toshoulder with community partners who opened their hearts and businesses to help raise awareness and funds.
In the spirit of our great tradition of nurturing abilities and changing lives, we designed our Giving Hearts Day campaign to capture the thrilling adventures of our personnel, donors, and the individuals we serve within the realm of medieval fantasy. The outpouring of support we received was truly worthy of the nature of our theme—in a word, it was heroic. More than 500 donors from across the nation rallied to support the Anne Carlsen Center on Giving Hearts Day on February 12, generating a record-setting $159,000 in combined gifts during this 24hour fundraising phenomenon hosted by Dakota Medical Foundation and Impact Foundation.
We are thankful to the North Dakota Legislative Assembly, Governor Jack Dalrymple and Lt. Governor Drew Wrigley, the North Dakota Department of Human Services, and the N.D. Autism Spectrum Disorder Task Force for the strong support they have demonstrated for autism programming across the state. We are grateful for their leadership.
ACC Chief Development Officer Patrick Kirby keeps our online audience updated on our Giving Hearts Day live streaming broadcast.
“It was truly remarkable,” says ACC Chief Development Officer Patrick Kirby. “With all the great nonprofits participating this year, it was exciting to be a part of the philanthropic wave of momentum that swept over North Dakota. To all who helped share our stories on social media, told friends and family to participate, and especially those who donated —we couldn’t have done it without you!” At the stroke of midnight, nearly $7 million dollars was donated on Giving Hearts Day to 287 participating nonprofits, surpassing last year’s total of $5.67 million. Jonas, an ACC student, looks to roast some marshmallows in our Giving Hearts Day video submission, The Game of Donors.
On behalf of all the good lords and ladies of the Anne Carlsen Center Kingdom, thank you for giving with your heart on Giving Hearts Day.
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n December 18, 2011, Tricia and Kelly Seckerson
Toddler and his family CHARGE toward a future filled with amazing possibilities
“It appeared to be a normal ultrasound. We left happy.”
waves revealed a strong heartbeat and
Not long afterwards, the doctor called to say that, upon closer examination, there appeared to be some concerns. He referred them to a specialist in Fargo who conducted a detailed ultrasound and an amniocentesis, a sampling of the fluid that surrounds the baby, to help determine if there were developmental
the movement of little arms and legs.
abnormalities.
saw their third child for the first time. The rural Jamestown couple did not yet want to know the sex of their baby due in March,
but “the doctor said he wanted to make sure everything was okay,” says Tricia. The high-frequency sound
Gage—pictured here in the classroom with teacher Sharon Olson; his mom, Tricia; and direct support professional Emily Snow— participates in the “Circle Time” musicand sensory-filled learning activities.
While no life-threatening issues were apparent, doctors prepared the Seckersons for a possible diagnosis of hydrocephalus—a buildup of cerebrospinal fluid that puts too much pressure on a baby’s brain. Medical staff helped familiarize the Seckersons with the neonatal intensive care unit at Sanford Children’s Hospital.
needs of Gage’s brother, Jackson (now 7), and sister, Clara (now 5). “We were not prepared for how much work it would be, while keeping our other children’s lives as normal as possible,” says Tricia. “I felt like I was Gage’s nurse, not his mom. I didn’t get to cuddle with him or sing to him.”
Difficult start On February 17, Tricia suddenly became ill at work. Doctors in Jamestown discovered she was severely dehydrated, and they began replenishing her fluids. While at the hospital, Tricia started to go into labor and was rushed by ambulance to Sanford in Fargo. Gage Seckerson was born on February 19 at 1:13 a.m. “He came out screaming and kicking. He came out like a champ,” remembers Tricia. “They gave him oxygen, and he was doing well. We saw him eight hours later. They walked us through everything. They said he did not have hydrocephalus.” While the official diagnosis would not be determined for nearly two years after Gage’s birth, there were immediate signs of a congenital disorder. He had low muscle tone, a curved back, right facial palsy, eyes slanted down, and a missing right earlobe. Bottle feeding was not successful, so a nasogastric tube was required for feeding. It became apparent he would require a long hospital stay. Three weeks later, Gage became severely ill and was airlifted to a hospital in Sioux Falls, S.D., to be stabilized. “It was the first indication there were major problems … that his body wasn’t making the proteins and hormones it should,” says Tricia. “He got so sick and swollen. Very swollen.” Two weeks later, he returned to Fargo, where he was hospitalized until early April. When Gage finally went home, he had spent a total of 49 days in the hospital.
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Their pediatrician at Essentia Health— Jamestown Clinic, Dr. Myra Quanrud, could see they needed help. Quanrud, who is also the medical director at the Anne Carlsen Center (ACC) Jamestown campus, knew the Center was uniquely qualified to provide the depth of support the family needed.
Tricia and Kelly Seckerson with their children, Clara (5), Gage (3) and Jackson (7).
A partner in life The Seckersons learned, through hospital-based classes, how to handle Gage’s respiratory needs, tube feedings and therapies at home. They quickly found themselves overwhelmed, as they also were trying to meet the
It wasn’t long before the Anne Carlsen Center was providing the Seckerson family with in-home support services, beginning with 20 hours weekly and gradually increasing to 40 hours weekly, on average. In addition, Gage receives physical, occupational and speech therapy services on the ACC Jamestown campus. The ACC Early Intervention program has provided home-based therapy and instruction, along with a wide array of information and resources. Tricia says the support from the Anne Carlsen Center has been a godsend for her family. “We couldn’t do everything they do,” she says. “We can’t do all that and be a mom and dad and go to work and help our other children.” Growing stronger Nicole Martinez is the direct support professional who provides the Seckerson family with in-home support. She plays a significant role in helping Gage grow healthier and stronger. “Gage is so attached to her, and vice versa,” says Tricia. Martinez assists the family with Gage’s medical treatments, tube feedings and doctors’ appointments. She also helps Gage work on a wide range of skill development. “I constantly try to incorporate something new,” she says. “We often work with Play-Doh, blocks and puzzles. We color and paint pictures, and I read Continued, next page books to him.”
Early interventionist Annie Schlecht also has come alongside the family, helping identify learning opportunities in the home. “One of my recommendations for improving Gage’s mobility was to get him to play with his toys at a higher level,” says Schlecht, who has an occupational therapy background. “With his toys up on the couch, he works on transitioning from the couch to the ottoman, taking one to two steps independently.” Gage took some of his first steps in the warm water therapy pool on the Anne Carlsen Center Jamestown campus. Aquatic therapy has helped Gage improve his strength, coordination and balance. “We were careful with his movements in the water at first because it was a challenge to his respiratory system,” says physical therapist Whitney Trautman, who worked with Gage on deep-breathing exercises to help strengthen his lungs for working in the water. “Now that his lungs are stronger, he is not getting sick as often.”
a real struggle early on,” says Schlecht. “We made games out of crawling … like racing like a puppy and flicking a ball with his nose.” Adaptive equipment loaned to the Seckerson family by the Anne Carlsen Center has also helped Gage develop more strength and endurance. This includes a gait trainer, a wheeled device that provides balance and posture support as a child learns how to walk. “With his gait trainer, he can go anywhere!” says Martinez, who helps Gage work on his motor skills each day by applying the recommendations of Anne Carlsen Center therapists. “There are two handles he holds onto. He can go forwards, left and right. Eventually, he’ll be able to go backwards, too.” Gage continues to make progress with the gait trainer and no longer relies on the device’s support straps. ACC professionals use a variety of assistive devices and gait therapy techniques to help Gage enhance his mobility. “His breath support also has improved greatly allowing us to challenge his physical abilities even further with fewer respiratory issues,” says Trautman.
Step by step In the winter of 2013, the Seckersons received the results of a genetic test confirming the clinical diagnosis provided separately by two geneticists. The test concluded Gage has Each day Gage amazes those CHARGE syndrome, a around him with his positive genetic disorder affecting attitude and persistence. “He many areas of the body and is a fun, little boy … and very occurring in approximately determined,” says Martinez. 1 in 8,500 to 10,000 “If he wants to do something, individuals. “CHARGE” ACC’s Nicole Martinez, who provides Gage and he’ll do it. Nothing ever holds his family with in-home support, helps Gage work is the acronym for a set of on numerous learning and therapy goals. Here him back!” congenital features at one they work on a puzzle together. time identified in children Thriving at 3 with this syndrome. Those Gage turned 3 years old in characteristics, however, are no longer used in making February, at which point he joined the early childhood an official diagnosis. education classroom on the Anne Carlsen Center’s Jamestown campus. It’s a milestone that was months in Infants with CHARGE syndrome often have numerous life-threatening birth defects. There are extensive medical the making. and physical challenges that vary from individual to individual. With effective intervention, children with CHARGE syndrome often surpass expectations. Gage is certainly exceeding expectations. As his health has improved, so has his development in a variety of key areas. Some of his most dramatic gains have been in his mobility. “Just crawling across the floor to get a toy was
Early Intervention (EI) concludes at age 3, and EI personnel supervised the transition meetings that took place leading up to Gage’s transition to preschool. “The professional collaboration is critically important and shows how well-rounded the Anne Carlsen Center is,” says Schlecht. “We all are working to help Gage have more independence and be able to access his environment in a safe way.”
The group discussed special accommodations Gage would need to be successful in the classroom and identified goals for Gage in his strength and skill acquisition. “We are working on his posture and balance so that he can safely sit in a child-sized chair as well as on the floor for activities with his peers,” says Trautman. “We are so excited for Gage as he starts this new adventure.”
Center they would be “confused, exhausted and emotionally drained.”
Last January, when Gage had an operation and several blood transfusions and spent two weeks in the hospital, “they sent us flowers and a stuffed animal, books and candy, as well as notes saying he was missed. They NICU doctors provided specialized care to Gage Seckerson asked if there was anything after he was born. Gage experienced multiple, we needed and if I wanted life-threatening medical complications related to his genetic disorder. someone to come and sit with While making gains in his me,” recalls Tricia. “They motor skills, Gage also is improving his communication have never viewed us as just a client. They really care.” skills. He knows sign language—at last count, around 60 different word signs. He is vocalizing more, thanks to After Gage was born, doctors warned the Seckersons about the many challenges and uncertainties ahead. a medical device called a Passy-Muir® Valve. The valve “There were so many unknowns. We didn’t even know is placed on the hub of his tracheostomy tube (the tube if he would ever smile because of the facial palsy. Now inserted into the hole surgically created in his neck and he can smile, clap, kiss and hug!” says Tricia. “Nothing trachea to facilitate breathing) and redirects air flow through the vocal folds, mouth and nose, providing Gage would be the way it is without the Anne Carlsen Center. I don’t think he’d be crawling or talking.” with a voice. Like many others with CHARGE syndrome, Gage was born deaf. A cochlear implant, a surgically implanted electronic device, provides him with a sense of sound, helping him interact more with the world around him. “They really care” The Seckerson family says without the Anne Carlsen
And while there are challenges, Gage has inspired all those around him to never underestimate his potential. “I want him to go to school … to homecoming … anything that the other kids can do,” says Tricia. “It will take some time, but we’ll make sure he gets there. He’ll get there.”
Joyful Music The many talents of Anne Carlsen Center students were on display December 19 in the auditorium on our Jamestown campus. A program involving costumes and the arts is held each year on the Friday before Christmas. During “Christmas 2014,” there was guitar playing, a bell choir, singing and short plays. One student took a high-tech approach, creating music using an interactive laser musical instrument. The early childhood education classroom presented The Nativity (pictured here), followed by the song “Go, Tell It on the Mountain.” The Anne Carlsen Center Christmas program concluded with a beautiful “Joy to the World” medley.
Teacher Marlena Maddock assists (from left) Bria Truax, Isabelle Maddock and Allan Stavem as they present The Nativity.
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This is the second installment in our Point of View series about 8th grader Cade Brademeyer, who was diagnosed with autism at age 5. A day student at the Anne Carlsen Center’s Jamestown campus since 2008, the Fort Ransom teenager is making steady progress in his ability to communicate and interact with others. Anne Carlsen Center professionals are using lowand high-tech tools to help equip Cade for navigating the complexities of life. Day by day, the 15-year-old student is learning crucial day-to-day living and safety skills. Here, speech-language pathologist Rachel Coppin shares her insight on Cade’s progress through the years, as he deepens his foundation for a future of greater independence.
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ade was initially diagnosed with autism in April 2006. His parents, Jay and Melissa, brought him to the Anne Carlsen Center for physical, occupational and speech therapy services as an outpatient. At that time Cade used several words and sounds to request or label items. He had a verbal ‘yes’ but would often try to push things away, try to leave the situation, or get upset because he did not know how to say ‘no.’ Speech was difficult for Cade and a source of great frustration for him, but he was proud when he was able to make his words understood. Picture communication worked better for him, and he was able to use photographs and line drawings to make choices and answer questions. Establishing a ‘no’ response was successful with the introduction of color-coded yes/no symbols. This helped relieve a lot of Cade’s frustration with not being understood.
Therapist helps student become more connected with the world around him
Cade learned some sign language that added to his communication options. Many of those signs he uses to this day, such as food, drink, more, all done, yes and no. Cade was discharged from speech therapy services in August 2006, as he was receiving services at his public school. He came back to the Anne Carlsen Center in 2008, this time as a day student. As with our other day students, Cade has therapy services woven through his school day. Since then, Cade has worked on increasing his use of his Picture Exchange Communication System (PECS) to make requests and answer questions. Over time he has transitioned to a fixed overlay communication book, which he uses to communicate by pointing to symbols on printed pages.
Cade also has had opportunities to try several high-tech augmentative communication devices. Some were not a good fit. He was successful with the iPad and an app called Proloquo2Go (P2G). Initially, Cade’s P2G was customized for him with complete messages ready to go and easy to find in the Cade Brademeyer, an ACC day student, with speech-language pathologist on-screen menus. He went works Rachel Coppin on expanding his on to learn basic sentence communication abilities via his iPad. construction and survival language. Now, when he is upset or frustrated, instead of acting out, he is encouraged to say (via his device, which has voice output) “I need help.” Staff then problem solve with him. When he is sick or hurt, he says, “I am sick,” or even just “sick.” He is also learning to request items he needs to complete activities. Cade has used and continues to use his communication device to complete his classroom curriculum. He also uses it when he attends public school for part of the school day and when placing orders at restaurants. Cade’s interest in spelling words—already demonstrated on his chalkboard wall at home and the word wall in his classroom—will be an integral part of his use of the device. Holding a conversation can be difficult for someone with autism. Cade is learning to contribute to conversations guided by others. I often use a visual of something he is interested in, such as fast food, home, Christmas, the circus or summertime. Summers, for instance, make him think about mowing the yard with his mom. I lead the conversation and try to get him to tell me things he likes to do. I may hint where to look on his device for specifics. Cade loves mechanical things and how they work. One of his greatest strengths is his sense of humor. It pops up at unexpected times and is refreshing. One of the primary goals for Cade, as he matures, is for him to spontaneously use his communication device in all his environments and to use his interest in spelling to enhance the available vocabulary with his own words. Cade’s use of augmentative communication is an evolving system which will grow as he grows. It will support the expansion of his language and interests, helping prepare him for the challenges and opportunities of life.
Rachel Coppin MS, CCC-SLP
New COO Brings Depth of Experience The new COO of the Anne Carlsen Center (ACC) Jamestown campus has more than 30 years of experience with residentiallybased services. Tim Eissinger, who began his role last July, provides overall leadership, guidance and direction of the daily operational activities of the ACC cottages and home living areas in Jamestown, as well as of the educational and therapy services on campus. His predecessor, Marcia Gums — who had served as COO of the Anne Carlsen Center since 2003—has continued on as COO of ACC Community Based Services. Eissinger started his career in residentially-based services with Dakota Boys and Girls Ranch—then called Dakota Boys Ranch—in 1983. He worked his way up the organization to vice president of programming and played an integral role in the development of co-ed programming and Ranch services throughout the Red River Valley. Most recently, he served as special projects coordinator for Dakota Boys and Girls Ranch. “Tim is an experienced leader with a well-developed network in North Dakota that will pay dividends for the Anne Carlsen Center,” says Anne Carlsen Center CEO Eric Monson. “He is a strategic thinker and grounded in the values of the Center.” Along with the rest of the executive team, Eissinger provides the leadership, management and vision necessary to continue to grow this organization and ensure financial strength and operating efficiency. He says it is an honor to be a part of the Center’s life-changing mission. “I have really enjoyed seeing people—both staff and the young people in our care—working to achieve their potential,” he says. “The culture supports staff and child alike working to better themselves on a daily basis, and that produces opportunities to celebrate every day.” Eissinger has a bachelor’s degree in psychology and a master’s degree in clinical counseling from North Dakota State University. He and his wife, Becky, reside in Fargo and have been married for 29 years. They have two daughters, ages 21 and 24. As a hobby/sideline business, Eissinger does computer graphics and 3D animation, and has completed work for groups like The History Channel, Discovery Health Channel, PBS, the Department of Energy, and many others.
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rips to the grocery store can be a challenge for all mothers of young children, but for Sarah Keller of Bismarck, those trips were terrifying. Even a quick trip to the store might be more than her 4-year-old son, Coulter, could handle. Coulter, diagnosed with autism at age 2, has sensory processing issues, struggles with transitions, and has the inability to self-calm. In addition, he is one of roughly half of children with an autism spectrum disorder (ASD) who attempts to elope from a safe environment. “He is too large to ride in the grocery cart,” says Sarah, who also has a 15-month-old son named Caleb. “I can’t really let him walk in the store, because it’s possible that he would run away from us if he became overwhelmed. It is a scary prospect to take both children places by myself.” Four-year-old Coulter “is a completely different kid,” says his mom, since receiving ACC Autism Services.
Another concern is the danger Coulter faces from his severe allergies to milk, eggs, soy, tree nuts and peanuts. It would only take a second for him to grab and eat something dangerous from a bulk bin. The Anne Carlsen Center (ACC) is helping the Keller family navigate complexities such as these. Beginning in June 2014, ACC began providing Coulter with Applied Behavior Analysis (ABA) training, a systematic approach to developing critical skill sets and reducing problematic behaviors. Highly-trained interventionists work one-on-one with Coulter, helping him improve his interpersonal and safety skills. To help make trips to the grocery store less stressful, Sarah says ACC interventionists “prepare outings that are highly structured. They provide redirection if he gets overwhelmed. I don’t have to worry that my son is running out of the grocery store.” These personalized services have helped Coulter with his level of engagement, use of language, eye contact, and many other areas of his development. “When people who haven’t seen him for a while see him again, they are amazed,” says Sarah. “He is a completely different kid. He has changed so much.” ACC also provides the Keller family with respite care, giving Sarah and husband Michael shortterm breaks from the intense responsibilities of caring for a child with autism. “This journey has forced us to make sure we take care of our health,” says Sarah.
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ACC Autism Services helps Bismarck preschooler succeed in many areas of life
“A blending of approaches” ACC Autism Services currently serves approximately 60 children and their families across North Dakota. There are 21 communities (large and small) in which these services are being provided. ACC also has supported children in
schools through school contracts in four communities in the state.
ACC provides ASD diagnostic services, comprehensive evaluations/assessments, and social skills camps.
The program has grown significantly since last June, largely because of the implementation of the new ASD Medicaid Waiver. “The Anne Carlsen Center has been selected overwhelmingly by the majority of families whose children qualify for that waiver,” says Lorena Poppe, the ACC statewide Autism Services director. “We have responded to the need for services regardless of where in the state the family is located.” In addition, ACC is supporting some families through the Autism Voucher program, implemented last July.
The impact of these services is long lasting. “Research shows that intensive intervention as early in a child’s life as possible is critical to children with ASD gaining skills in areas of need,” says Poppe.
Hours of support per child range from 20 to 80–90 per month. The services are highly individualized, says Poppe, with services taking into consideration “assessment data, family circumstance, school programming and individual therapies to assure a holistic approach that is consistent with all aspects of the child’s life.”
Hope for the future The Keller family is thankful for the opportunities Coulter has had to practice his skills in a variety of settings. ACC professionals ensure that all of his adventures—to places like the zoo and the Heritage Center— are conducted in a safe, structured way. Those outings have included opportunities to learn and play with other young children receiving ACC services. In the process, Coulter’s communication and social skills have greatly improved. “When I looked at videos of him from before, I could see that he was not engaging, not making eye contact, not responding to his name,” remembers Sarah. “Now, he can engage you, and he does make some eye contact.”
Since its launch in 2012, ACC Autism Services has provided evidence-based ABA treatment utilizing the Center for Autism Coulter will have one more and Related Disorders (CARD) year of preschool, and then Skills® curriculum. As the Sarah and Michael Keller of Bismarck with their children, Coulter and Caleb. program has grown, ACC has he will start kindergarten in Photos by Ashley Hazeman Photography added services such as social the fall of 2016. With each skills support, respite care, milestone he reaches, his tutoring and a number of parents grow more hopeful evidence-based models for supporting individuals living and confident. “What’s going to happen to him once we’re with an ASD. Coulter, for example, receives movement gone? All parents of a child with autism ask themselves therapy—which helps calm him in overwhelming that,” says Sarah. “With all the progress Coulter situations—in addition to ABA training. “It’s a blending has made up to this point, we have hope that he will of approaches, because that is what works best for him,” someday live independently or semi-independently.” says Sarah. “They meet kids where they’re at.” This busy mom says having the Anne Carlsen Center as A pioneer in implementing autism-related services, an ally and a resource has been life changing: “They care the Anne Carlsen Center continues to lead the way in about Coulter and will take the time it takes to help him providing supports and services across the state. The be the best Coulter he can be. It’s wonderful when the cities of Jamestown, Grand Forks, Fargo, Bismarck, people on your team are as interested in your goals as Minot and Devils Lake have ACC offices providing you are.” support for Autism Services. In addition to the direct services in homes and communities across the state,
All Children, All Abilities
Rendering of the new, expanded space at TNT Kid’s Fitness & Gymnastics.
A new resource to develop the unique gifts of those we serve is just a few monkey bars away… The Anne Carlsen Center (ACC) is excited to announce a collaborative partnership with TNT Kid’s Fitness & Gymnastics and Haley’s Hope. The goal of the collaboration is to provide individuals of all abilities with innovative opportunities for fitness and skill building. Building capacity together and maximizing the impact of our resources, the collaboration creates the first “All Children—All Abilities Center,” which is nearing completion. The one-of-a-kind initiative creates a 20,000 square-foot area within the current TNT Kid’s Fitness facility in Fargo, to serve the community as follows: • The nation’s first public sensory gym (benefitting individuals with sensory disorders) • Fitness gym for individuals of all abilities • Inclusive childcare with focus on fitness, education and child development skills
Purposeful Play The Anne Carlsen Center (ACC) is working to make the world of play more inclusive by providing children and families with a wide-array of toy-related resources and guidance. The Center is incorporating a life-changing concept developed in Sweden called Lekotek (“lek” means play and “tek” means “library”).
• Partner-allocated space serving those with unique needs • Lekotek Toy Lending Library TNT Kid’s Fitness & Gymnastics helps children of all abilities reach their full potential through gymnastics and fitness. Haley’s Hope specializes in screening and consulting for dyslexia. “Their vision is so similar to ours. This partnership combines our strengths in maximizing development and opportunities for individuals in a variety of areas,” says Anne Carlsen Center CEO Eric Monson. “Together, we can work to help those we serve achieve success in their recreational, fitness, learning and social goals in life.”
from the Fraternal Order of Eagles. Todd Kollman, ACC adaptive equipment specialist, made toys switch-adapted for use by children with limited mobility. Toy lending and guided play sessions will begin in the spring of 2015 for Grand Forks-area families. The goal is, over time, to develop Lekotek-related services at ACC locations throughout the state.
One-year-old Ezra Houska, who has a traumatic brain injury, plays with toys during the Lekotek training session.
In November, 21 ACC team members participated in Lekotek training to become family play specialists. After months of work, the pilot Lekotek program has been developed within ACC Grand Forks Community Based Services. The Grand Forks office now houses a Family Toy Lending Library containing an assortment of toys and activities for children of all ages and all abilities. The Anne Carlsen Center received toys from the National Lekotek Center valuing approximately $2,000 and purchased additional toys using a $1,000 grant
Lekotek play sessions will provide services and supports for children and their families by promoting the benefits of toys and play. Many families with children struggle to find toys and activities that are appropriate, accessible and motivating. Lekotek sessions will help identify toys that allow the whole family to participate in play. Participation in the Lekotek program does not require a referral or a diagnosis. Families pay $30 per month to utilize the toy lending library and family play sessions. In addition to providing services to families, family play specialists provide input and insight to be used in the development of the Toys “R” Us Toy Guide for individuals of all abilities. “This is complementary to everything else we do as an organization,” says Stephanie Nelson, the ACC Ideation Center director. “Lekotek helps make the world a more accessible, fun place! A child’s work is play, so we want to help each child be more successful at it.”
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recent study published in the journal Pediatrics showed more than half of Americans with autism who graduated from high school in the past two years had no participation in employment or education. A company founded in 2004 in Denmark is taking a socially-innovative approach to helping change this. Specialisterne—which means “the specialists” in Danish—was started by Thorkil Sonne, who has a son with an autism spectrum disorder (ASD). Specialisterne harnesses the unique skill set of highfunctioning individuals with ASD as a competitive advantage in the labor market and trains them to become professional IT consultants. It has operations around the world. Now, thanks to funding from the Anne Carlsen Center, Specialisterne has a presence in the Midwestern U.S., with an office and training facility in downtown Fargo. The first group of recruits— six individuals ranging in age from 23 to 36— completed a three-month training program last year to prepare them for detail-oriented jobs at tech companies in Fargo. Alex Lee is one of those individuals. “The training provided by Specialisterne helped identify what I can focus on for long periods of time and what things I easily lost focus,” he explains.
Appareo designs, develops and manufactures electronic and software solutions for aviation, agricultural and construction manufacturers. Alex assembles, tests and packages different components. “To me, this means I have successfully made a big step in my life,” says Alex, “and I feel proud to call myself a working man.”
Four other specialists are doing quality assurance for another Specialisterne partner, Myriad Mobile. The specialists work Alex Lee at work as an assembler at Appareo as consultants, testing Systems in Fargo. software for the mobile app development company and ensuring that the software is void of glitches.
Tapping into the talents of individuals long overlooked in the world of work
Alex’s talents—such as his attention to detail and being highly skilled with his hands—made him a great fit for a position with Appareo Systems in Fargo.
Tony Thomann is executive director for Specialisterne Midwest (which includes Iowa, Minnesota, Montana, North Dakota, South Dakota and Wisconsin). He says he is on a mission to help change the world of work, so that when people with autism apply for a job “their strengths are noticed more than their weaknesses.” Those strengths often include good memories, attention to detail, appreciation for structure and routine, and ability to stay focused. “Their level of ability is exceptionally high. They have something to contribute of value. They want to work, and they want to do a good job. In the Midwest we hang our hat on that.”
Like Sonne, Thomann has a personal connection to this mission. Both of his sons, ages 5 and 9, have an autism diagnosis. “My oldest son goes to a school for the gifted and talented. He’s a brilliant kid,” he says. “If I can have success in the world of work, why can’t someone like him?”
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harlee Stangeland is far too young for a driver’s license, but already she is learning to maneuver a set of wheels.
The 3-year-old from Kensal, N.D.—who receives therapy services from the Anne Carlsen Center (ACC)—is utilizing the Center’s new motorized training vehicle. The joystick-controlled, ride-on car was specially designed for ACC to give toddlers and preschoolers with motor impairments the chance to experience the independence of power mobility. The vehicle is the product of a partnership between the Anne Carlsen Center and North Dakota State University (NDSU). Students in NDSU’s Department of Electrical and Computer Engineering designed and built the car, with guidance and input from ACC physical therapist Natalie Lonnberg. The project was supervised by Dr. Mark Schroeder, an NDSU assistant professor, and made possible with a grant from the National Science Foundation. The students dubbed the vehicle “The Joy Rider,” and it has definitely provided joy to Charlee, even during her inaugural ride. “She was nervous at first until the lights [on the vehicle] came on. Then everything was okay,” says Lonnberg. “She went 40 feet across the physical therapy gym. She laughed a lot.” The idea for the project originated from the Anne Carlsen Center. Some of the young children receiving ACC therapy services might not be walking or crawling, but they “have the cognitive ability to do so much more,” says Lonnberg. “There’s a lot of research that supports early power mobility in relation to cognitive and speechlanguage development, so independence in mobility provides a positive and lasting impact on the child.”
While these toddlers and preschoolers are good candidates for power mobility, there are few power mobility options on the market for young children. Power wheelchairs can be intimidating for parents who are nervous about introducing power mobility so early. The NDSU students involved with the project— Mitchell Stoeberl, Drew Wyum, Godfried Asa-Attuah and Ravinder Chahal—set out to create a tool that was low to the ground, fun and friendly looking, and easy for a small child with motor impairments to operate. Safety was also a major consideration. There are external sensors under the footrest and on the bumper, which when tripped, let the child know that objects are too close. There is also a wireless remote allowing the therapist to override a child’s control of the vehicle if there are problems.
Lonnberg’s insight helped with the development of many of the vehicle’s specifications and safety features, which “allowed us to create a product that Natalie would appreciate and also be able to use as part of the therapy,” Therapy department says Asa-Attuah. “. . . her input gains a new tool for was crucial in major and minor enhancing mobility design choices.”
Three-year-old Charlee Stangeland uses the new motorized training vehicle.
The students found it extremely satisfying to know the impact their project would have on children in the crucial years of development. “It thrills me to know that these children will be able to explore their curiosities in the world around them, and be able to follow their peers around,” says Stoeberl. “I know the reason I wanted to go into the field of engineering was from exploring and experimenting with the electrical appliances around me.” Chahal says a tour of the Anne Carlsen Center helped deepen her understanding and appreciation of the importance of “The Joy Rider” project. “There is nothing better than helping somebody in a way which could change their life,” she says.
Sweet CORN Kids On the edge of Underwood, N.D., a picturesque farmstead attracts people from miles around every August and September. A roadside corn stand with a child’s writing on the sign is so well known in the area that people call when harvest approaches to inquire when the seasonal treat will be available. The corn stand is a labor of love for 10-year-old Cade Kjelstrup and his 7-year-old sister, Reagan, and 5-yearold brother, River, who – in addition to operating the corn stand – sell their corn at area farmers’ markets. While they do use some of the money they earn to buy small gifts for themselves, they give most of it away to charity. For the last couple of years, they have selected the Anne Carlsen Center (ACC) to receive the proceeds. Their parents, Taryn and Krist, ensure that their children also participate in the corn planting and harvesting. “They ride in the tractor with their dad,” explains Taryn. “There is so much excitement as they wait for the corn to grow. They dig up a seed to see if it’s sprouted, and when the stalks appear, they are out there measuring the height.” Then, when it’s time for the harvest, they help fill canvas newspaper bags full of corn and haul the corn in wagons to the roadside stand. The idea for the charity corn operation was born when the Kjelstrups were trying to find a purpose for a twoacre field in front of their house. The field was too small for large machinery, but a small corn planter would fit. The Kjelstrups knew this was the perfect opportunity for their children to roll up their sleeves and make an impact in the lives of others. While the sign that sits by their roadside stand advertises $3.00 for a dozen ears of corn, there are corn enthusiasts who pay more. Since the stand is not manned, payment is based on the honor system. “Some people know the kids do it for a good cause and they slip a twenty-dollar bill in [the box].” The children’s great-grandfather, Marvel “Kelly”
Cade, River and Reagan Kjelstrup smile for the camera, after bringing a load of sweet corn to their roadside stand. Photo by Suzanne Werre
Kjelstrup, donated to the Anne Carlsen Center for many years. “He had a special place in his heart for the Center because he had a physical disability,” says Taryn. Each subsequent Kjelstrup generation has financially supported the work of the Center. On Giving Hearts Day—the 24-hour event in February in which donations are matched—the Kjelstrups gave the ACC the proceeds from the 2014 corn sales. “To be that giving at such a young age, it is remarkable,” says Michelle Walker, ACC associate development director. “They worked hard all summer and then took the fruits of their labor and gave it away, so that other kids could benefit. It’s really quite impressive.” The hard-working trio says the rewards of their generosity are many. It makes Cade “feel really warm inside” and River feel “helpful” and “happy.” Reagan adds that “the kids [at the Center] need extra help, and I want to help them learn.” When the children received handmade bookmarks from students at the Center as an acknowledgement of their fundraising efforts, they were deeply touched. “They love the Anne Carlsen Center,” says their mom. “They’re hooked on it.”
You Make a Difference! Thank you for enhancing the lives of remarkable individuals across the state. Christmas Appeal – Thank you for your special Christmas gift of love and compassion! Donors gave nearly $50,000 to help us provide the most advanced medical technology and skilled medical personnel for the medically complex individuals we serve. Thanksgiving Appeal – You are empowering individuals with autism and their families all across North Dakota. We are grateful for the combined total of nearly $18,000 that donors gave to help support our person-centered services from highly-trained autism interventionists. Thank you for providing hope and encouragement!
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
Els for Autism Prepare to tee up at one of the most scenic golf courses in the region to help fund vital autism services. The Anne Carlsen Center is partnering with the Els for Autism Foundation for a charity golf tournament at Hawktree Golf Club on Monday, June 29. Hawktree Golf Club, located five miles north of Bismarck, is well known for its spectacular scenery and challenging course. Els for Autism was founded in 2009 by World-Class Pro Golfer, Ernie Els, and his wife, Liezl. The couple’s son, Ben, has autism.
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
The evening of Sunday, June 28, there will be a dinner for tournament participants. Laughing Sun Brewery Co. of Bismarck will provide handcrafted brews to accompany the meal. A tour of the brewery will follow.
Carlsen Cup The 3rd Annual Carlsen Cup Mini Golf Tournament will be held at Thunder Road Family Fun Park in Fargo on Tuesday, July 21. The event includes hole-in-one contests and prizes, dinner and snacks. Funds raised support ACC Community Based Services in the Fargo area. Contact Jeannie Camarillo at 701-371-3554 for more on this event.
Michelle Rodgers Hopkins, Minn. Thomas Rohleder Fargo, N.D. Janet Seaworth Secretary Bismarck, N.D. Casey Stoudt Jamestown, N.D. Pat Traynor Immediate Past Chair Fargo, N.D. Reesa Webb Centennial, Colo. Myra Quanrud, M.D. Ex Officio Jamestown, N.D.
SENIOR MANAGEMENT
Marcia Gums Chief Operating Officer – Community Based Services
Sam Brownell Information Technology Director Allan Hartmann Chief Financial Officer Patrick Kirby Chief Development Officer Kresha Wiest Director of Mgmt. Systems
Margie Johnson Human Resource Director
Stephanie Nelson Director of Ideation Center
Tim Eissinger Chief Operating Officer – Jamestown Campus
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
Suits & Sandals Experience fine dining on the water’s edge while enjoying live music! The 3rd Annual Suits & Sandals will be held Thursday, August 13. The semi-casual beach party takes place at McDowell Dam Beach, five miles east of Bismarck. Funds raised support ACC Community Based Services in Bismarck. Contact Michelle Walker at 701-751-3732 for more details.
Felicia Sargeant
Brittany Lipetzky
Associate Development Director
Development Coordinator
felicia.sargeant@annecenter.org
brittany.lipetzky@annecenter.org
Grand Corks Join us for the 2nd Annual Grand Corks at the Gorecki Alumni Center at the University of North Dakota in Grand Forks on Thursday, October 29. Local restaurants will compete for votes for best dessert. The evening also includes appetizers, a silent auction, wine samples and a fun Wine Walk. Funds raised will support ACC Community Based Services in Grand Forks. For more information, contact Jeannie Camarillo at 701-371-3554.
Logan Little, Assistant Editor logan.little@annecenter.org
Contact Michelle Walker, ACC associate development director, at 701-751-3732 for more information.
ACC Invitational The 33rd Annual Anne Carlsen Center Golf Tournament will be held Thursday, July 16, at the Jamestown Country Club. The day includes 18 holes of golf, hole contests and prizes, an awesome swag bag, a meal and on-course beverages. There will be a free concert following the tournament. For more information, contact Felicia Sargeant at 701-952-5102.
Bruce Furness Fargo, N.D. Harvey Huber Vice Chair Jamestown, N.D. Bruce Iserman Chair Fargo, N.D. Pat McCullough Treasurer Loretto, Minn. Robert Montgomery, M.D. Fargo, N.D. Sue Offutt, Ph.D. Arlington Heights, Ill. Nicole Poolman Bismarck, N.D.
Eric Monson Chief Executive Officer
The Anne Carlsen Center is dedicated to helping individuals with autism spectrum disorders (ASD) enjoy greater independence and quality of life. Through its Autism Services, ACC offers an array of personalized services, interventions and support across North Dakota.
2015 Donor Events
Board of Trustees
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
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Eco-friendly Ambassador Brittany Lipetzky, Assistant Editor The Ambassador is printed on an brittany.lipetzky@annecenter.org environmentally-certified paper. Each page has a 10% postPaul Johnson, Designer consumer waste content, and paul@pauljohnsondesign.com the inks utilized are Soy Inks. The Ambassador is mailed, free of charge, for supporters of the mission and vision of the Anne Carlsen Center. On the Cover: Gage Seckerson is improving his coordination in ACC's warm water therapy pool.
O u r C o m m u n i t y Pa r t n e r s
The Anne Carlsen Center partners each year with area businesses who share the Center’s passion for empowering children, adults and families to lead lives of greater independence and hope. These businesses are helping continue the rich tradition the Anne Carlsen Center began more than 70 years ago. We are grateful for the commitment, compassion and vision of each of our Community Partners.
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