FALL/WINTER 2014 www.annecarlsen.org
For supporters of the mission and vision of the Anne Carlsen Center
Anne Carlsen Center helps 2-year-old David Schwengler and his family reach the milestones of life PAGE 4
Through Their Eyes Education staff offer their perspectives on a remarkable student PAGE 8
Pedal Power Bike camp helps riders gain confidence and lose the training wheels PAGE 14
Tools for Success Hands-on learning opportunities from the Ideation Center make major impact PAGE 12
The Perfect Fit Maxine Schmautz touches the hearts and minds of medicallyfragile students PAGE 10
An obstacle course during the Fargo social skills camp provided plenty of exercise and enjoyment. Here, one of the campers runs up the Air Pit using the ladder feature, before sliding down the slide on the other side.
Anne Carlsen Center clients and children of staff enjoyed climbing aboard the air gym equipment that staff set up during the Fargo family picnic.
During the social skills camp in Jamestown, campers were invited to bring a friend along.
Children in the Jamestown social skills camp line up on the air gym equipment for a calming activity. Staff filled the equipment with air and then released some air to create a gradual up and down movement.
nne Carlsen Center students and clients are enjoying some air time, courtesy of a Michigan company that makes gymnastics training aids. Tumbl Trak has donated a variety of air gym equipment to the Center in the hopes of learning how the tools can be used to benefit individuals with disabilities.
Abby jumps on the Fitness Wheel, a trampoline that provides opportunities for sensory input and exercise.
One of the campers lifts bean bags out of the Air Pit with her feet.
An obstacle course during the Fargo social skills camp promoted movement, balance and fun!
The Tumble Trak equipment was a big hit during the Grand Forks social skills camp. This activity promotes core strength, handeye coordination and sensory input.
Since April more than 100 children and young adults who receive ACC services have enjoyed time on the equipment, building core strength while having fun with their friends.
Staff has noticed a decrease in behaviors in individuals with autism after sessions on the Tumbl Trak equipment. During the social skills camps across the state, staff utilized the therapy tools to help campers overcome sensory impairments and work on following instructions and taking turns.
Those with limited mobility, including those in wheelchairs, are now experiencing the sensation of jumping and bouncing. The Tumbl Trak equipment is at the same height as a wheelchair making for easier transfers, and some of the pieces can even accommodate wheelchairs when the air pressure is adjusted.
During the cold, winter months, the equipment will provide opportunities for individuals to enjoy movement and exercise indoors. The Center hopes to eventually purchase additional equipment to increase the number of ways and locations in which these tools can be used.
M E S S A G E
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Equipping individuals and families to reach their full potential Each day the Anne Carlsen Center family celebrates the breathtaking achievements that happen in the lives of individuals and families across the state. Many of these accomplishments mark the attainment of developmental milestones—behavioral or physical signs of developmental progress. In the first few years of life, these milestones include walking without assistance, drinking from a cup, following simple commands and taking turns in a game. The Anne Carlsen Center’s Early Intervention Program helps children at risk for delayed development learn and master many new skills and tasks. Research in this area shows that the sooner these services begin, the better the outcomes. That’s why our early intervention often begins just days after a baby is brought home from the hospital. In this edition of The Ambassador, we profile a Fargo family benefitting in many ways from our Early Intervention Program. An early interventionist provides support, instruction and resources to Marijo and Jason Schwengler and their youngest son, David, who is now 2 years old. These individualized services are making a difference for every member of this tight-knit family—including David’s three older brothers. You’ll find their inspiring story on pages 4–6. It was exciting over the summer to see a group of 18 children and teenagers achieve a major milestone in their lives. In August, the Anne Carlsen Center collaborated with iCan Shine, a national nonprofit organization, to teach participants in a week-long camp how to ride a conventional two-wheel bicycle (see pages 14–16). For individuals with medical, physical, cognitive and/or behavioral impairments, riding a bicycle—without training wheels— can be a challenge. By the end of the bike camp, all of the participants had left their training wheels in the dust. The number of lives the Anne Carlsen Center touches with our personcentered support continues to grow. When the Center’s doors first opened in 1941, there were 18 students. Today, the Center is meeting the needs of more than 1,800 individuals and their families across North Dakota in communities of all sizes. We currently serve individuals in each of the state’s 53 counties.
McKenzie Kainz, bike camp participant
A leader and innovator in the area of disability services, the Anne Carlsen Center is dedicated to sharing this expertise with others in as many ways and places as possible. The Ideation team at the Center plays a significant role in this outreach. On pages 12–13 you’ll learn how these professionals are creating educational opportunities that are both practical and fun. You play an important role in these life-changing services! It is such a privilege to partner with you, our faithful donors, in helping individuals of all ages reach for the stars—and then see those dreams become a reality. The entire Anne Carlsen Center family wishes you and yours a holiday season filled with joy and peace. Gratefully,
Eric M. Monson Chief Executive Officer Anne Carlsen Center
onored guests scurried into the Ramada Plaza Conference Center in Fargo this summer to receive a distinguished prize recognizing works of extraordinary service in their professions. Some of them even brought along their owners ... During the 16th annual North Dakota Veterinary Medical Association (NDVMA) Animal Hall of Fame ceremony, the Anne Carlsen Center’s assistance dog, Champ, was on hand — or rather, on paw — to receive his award for the Professional Animal of the Year. Nominated by Jamestown veterinarian Dr. Dawn Entzminger, the award acknowledges the breadth of social support tasks Champ completes each day, under the expert supervision of Canine Handler Adele Harrington.
girl with mobility issues is waiting to brush him. This simple exercise not only provides a soothing comfort to the girl, it also allows her to use a range of motion that loosens up her muscles. Champ sits calmly and enjoys the grooming. 11 a.m. – Champ is called to a speech therapy session. This student is non-verbal and communicates by pushing buttons on a special communication device. Each button corresponds with an audible command that Champ understands, and the student is filled with delight as he tells Champ to fetch, shake and roll over, as well as some more advanced commands like “brush teeth.” 12 p.m. – Champ assists a student in walking to lunch. This student struggles with social interactions, but with Champ by her side, those interactions are much easier. When another student approaches her to pet Champ, the assistance dog inspires a conversation between the two.
“We were pleased that Dr. Dawn chose Champ for a nomination in the Service Dog Professional category for this 1 p.m. – Champ and Adele year and even more pleased Champ, a Labrador Retriever, spent walk to the gymnasium for months training to be the assistance dog when we were notified that at the Anne Carlsen Center. adaptive physical education he was chosen for the award class. Champ’s basket of toys in that category,” Harrington is placed upon a small scooter says. “He was given a very nice board, which is tethered to a plaque with a large basket of food, treats, toys, and piece of rope with a PVC handle. Placing the handle in a nice soft comfy bed which he cheerfully accepted.” his mouth, Champ pulls his equipment behind him, in While the human attendants feasted over (what else) between rounds of fetch. Champ also assists a student hot dogs, Champ and his fellow four-legged frontin picking up some scattered building blocks. When runners were introduced by NDVMA officials with a they’re done cleaning up, the student sits on the scooter slideshow highlighting their responsibilities and achieve- board while Champ pulls him across the gym floor. ments as Hero, Companion, Professional and Therapy In a laudable act of modesty, Champ did not comment animal inductees. The NDVMA presented a sample of a about his prestigious honor. He was too busy enjoying typical work day for Champ, abbreviated here: his doggie-bag of trophies, looking forward to another 10 a.m. – Champ is summoned to an occupational day of meaningful work with his family of special therapy session at the Anne Carlsen Center. A young students at the Anne Carlsen Center.
he Schwengler home in South Fargo is filled with love and laughter. When the weather is nice, the merriment spills into their sprawling backyard.
The four Schwengler boys—ranging in age from 2 to 10 —are experts at backyard play. They zip down the 8-foot slide of their wooden swing set, build castles in their sandbox, and splash in their plastic pool. They savor the swish of the basketball as it passes through the kidsized hoop and the thud of the bright yellow baseball bat as it makes contact with the ball.
And sometimes, four boys with a lot of energy just like to run as fast as their legs can carry them across the lush, green grass and under the majestic elm trees behind the Schwengler home. Through the many hours of play, these four brothers have forged an unbreakable bond. Sure, like any other siblings, they disagree from time to time. More noticeable, though, is their affection for and fierce loyalty to each other.
Fargo toddler has team support on journey to success
“It has been wonderful to have someone to guide us through this process,” says Marijo. “We don’t have to try to figure out on our own where to go and what to do. Sandy has helped us to not be afraid. She reassures us that we are doing everything we can to help David succeed.” One early concern was communicating David’s diagnosis to his siblings: 4-year-old Simon, 8-year-old Andrew and 10-year-old Jacob. How would Marijo and Jason tell them? Would the brothers view David differently? So many questions raced through their minds. “We really struggled with that … how to tell them,” remembers Marijo. “Sandy helped prepare us for the conversation, which ended up going really well.”
The Schwengler family has grown even closer because of a journey that began in 2012. “Shoulder to cry on” On February 29, 2012, David Schwengler was born. “The next morning the doctor came into the hospital room and told us that she suspected David has Down syndrome,” says Marijo Schwengler. “The bloodwork later confirmed it.” An earlier screening test had indicated there was a chance their baby had Down syndrome, a congenital disorder that occurs when an individual has a full or partial extra copy of chromosome 21. However, level 2 ultrasounds early in the pregnancy showed no signs of soft markers for Down syndrome, so Marijo and husband Jason were still unprepared for the news. They had so many questions about the future … about David’s future. Not long after the diagnosis, they were put in touch with the Anne Carlsen Center (ACC) Early Intervention Program. Sandy Roe, an early interventionist who serves Fargo-area families, began working with the family. “At the beginning,” says Jason, “Sandy was another shoulder to cry on. She helped us realize that we aren’t alone. She helped put so much into perspective.”
(Left) David Schwengler is an ACC early intervention client. (Above) Marijo Schwengler helps her sons—Jacob, Andrew, Simon and David—make a solution for blowing bubbles.
toddlers learn most easily through normal, everyday routines, early interventionists offer insight into how to turn daily activities into learning opportunities.
The ACC Early Intervention Program is designed to provide families and caregivers with the support, instruction and resources needed to help maximize a child’s learning and development. Because infants and
Marijo blows a homemade bubble while David and Jacob watch with glee.
Building blocks “The first few years of life is when the human brain is developing the most,” says Roe. “Stimulating the brain helps pave the way for a lifetime of learning.” In addition to working with David and his family at their home, Roe has spent time with David at daycare. “I helped David transition from the highchair to sitting at a table with half a dozen other kids. We’ve also worked on following the routine at daycare,” she says. “It’s fun to see him progress and be right on track with other kids.” David receives speech, occupational and physical therapy services at Sanford Health in Fargo, and Roe acts as a liaison between direct therapy and the family. “I visit with the therapists to share information and facilitate a Continued, next page
conversation,” says Roe. “We learn a lot by working together.”
received the “National Buddy Walk of the Year” award, the entire Schwengler family went to Washington, DC, to accept the award on the group’s behalf.
Some of the biggest priorities for David have involved the development of his gross motor skills, such as rolling over, crawling, pulling to stand and walking. He’s also made improvements with fine motor skills such as feeding himself and getting dressed. “With our other kids, there were things we took for granted. So much of their development seemed to happen naturally,” explains Marijo. “With David, when he does something—like put a coin in a piggy bank—for the first time, it’s a big deal. We’ve learned to appreciate every accomplishment.”
Marijo chaired the Fargo walk again this year. There were 1,500 attendees and a total of $110,000 was raised.
David and his older brothers love to spend time playing in the backyard. Here, Jacob and David take a ride down their long yellow slide.
Recent goals have centered around David’s communication. The family reads to David frequently, and he has demonstrated an interest in books. His receptive language has improved, and he is using more sign language and vocalizing more. His first word? It won’t surprise you. “In June, out of nowhere he said ‘brothers,’” remembers Jason. “That was a huge milestone.” Taking the lead Roe has urged the Schwenglers to become connected to other families walking the same path. The family has taken that advice, getting involved with area organizations such as Up with Downs, a Down syndrome support group in the Fargo area. In 2012 the Schwenglers participated in three Buddy Walks across the region. The walks, established by the National Down Syndrome Society, celebrate Down Syndrome Awareness Month in October and help promote acceptance and inclusion of individuals with Down syndrome in communities across the country. “We drove 1500 miles in just three weeks in order to be a part of these events. Our team—David’s Dreammaker Team— raised more than $3,000,” says Marijo. “The following February I was asked to chair the first-ever Buddy Walk in Fargo.” The 2013 walk was a huge success. Two-thousand walkers participated, raising $75,000 for Down syndrome awareness. When the Fargo Buddy Walk
So far, the Schwenglers have participated in nine walks for Down syndrome awareness. Each time they lace up their walking shoes, the members of David’s Dreammaker Team help communicate the value that individuals with Down syndrome have in the world. Paving the way
As the Schwenglers contemplate the future, their hope continues to grow. “We are still concerned about the unknowns, but we have a lot more certainty now,” says Jason. “We can see that David is developing at his own pace.” And this family of six is learning what is truly important in life. “David was walking at Christmas,” says Jason with a smile. “That was the best Christmas gift we could ever ask for.” Soon, David will be taking a big step. One of the goals of early intervention services is to guide the family through the transition process from the Early Intervention Program into the school environment. Roe and the Schwenglers have been meeting with The Early Childhood Preschool staff from Fargo Public Schools. Together they are paving the way for David’s enrollment in the pre-school program when he turns 3 years old. “David is an exceptional child. We are working to ensure he has the opportunity to succeed in whatever he chooses to pursue,” says Roe. His brothers see no reason that goal cannot become a reality. “Even though someone has a disability, they are a person just the same,” says David’s oldest brother, Jacob. “Down syndrome makes it a little difficult … he struggles with stuff that we might not, but in every other way, he is the same as us.”
Positive & Practical Autism expert shares thoughtprovoking strategies during Fargo conference
nationally known teacher, consultant, trainer, presenter and author spent time with area professionals and parents during an autism conference on August 13 in Fargo. Barbara T. Doyle, from Orland Park, Ill., led two sessions: a day-long session for professionals and parents followed by an evening session specific to families.
Doyle presented solutions for common issues at home, school, work and social situations. In addition to drawing from her professional background, she shared on a personal level. Doyle is "Aunt Barbara" to Tom, who has an autism spectrum disorder (ASD) and is a licensed CPA in California. There are now four more individuals with an ASD in Doyle’s extended family. “People with severe autism are fully human,” Doyle reminded her audience. “Assume competence, just as you would working with anyone else.”
The conference was hosted by the Anne Carlsen Center (ACC) at the Ramada Plaza Conference Center. The participants, 120 in total, gained positive and powerful strategies for working with individuals with autism. ACC has hosted autism conferences since 2008 at locations across the state on topics such as communication, literacy and sensory integration. Doyle is a consultant in private practice and has developed realistic and practical approaches to addressing the needs of children and adults with autism across their lifetimes. She is dedicated to advancing effective teaching, adaptations and accommodations. Professionals attending the conference appreciated her “ready to apply” information, effective communication-based strategies and positive approaches to changing behavior. “I learned more about the importance of body language and eye gaze (eye contact),” says Cassi Czerwonka, an ACC autism interventionist in Grand Forks. “We often forget how much clients communicate with us. And when it comes to proximity … we usually pull them to where we are, instead of us going to them. We should go to where they are.” Special education teachers and directors were among those participating in the conference. Kathleen Schauer, the director of special education for the South Central Prairie Special Education Unit—consisting of eight school districts—says the conference equipped her with valuable communication strategies. “Communication is vitally important, including being a good listener with students,” she says. “I have a lot to take back to our 18 staff for training, so they can learn more about autism.”
Barbara Doyle, a special education professional, provided conference participants with practical and positive approaches to helping individuals with autism.
Tricia Page was among those in attendance. Page, the state autism coordinator with the North Dakota Department of Human Services, says the presentation was beneficial to her professionally and personally. “This was very helpful to me as the parent of a 12-year-old son with autism. She [Doyle] gave me permission to step back and be okay with my son acting differently in certain situations. I shouldn’t worry about what other people say or think,” says Page. “She’s real—you can put yourself in each situation she describes. She made me think about how I could approach situations differently.” Watch for details about future conferences hosted by the Anne Carlsen Center at www.annecarlsen.org.
Eighth-grader Cade Brademeyer, diagnosed with autism at age 5, has frequently been featured in The Ambassador. The Fort Ransom boy’s connection with the Anne Carlsen Center (ACC) began as an outpatient therapy client. Then, in 2008, his parents enrolled him as a day student at the Center’s campus in Jamestown. They make the 130-mile drive (round-trip) each school day, so their son can receive top-notch care. Cade continues to amaze those around him, as he develops vital skills and meaningful relationships. In this first installment of our “Point of View” series, ACC teacher Corby Maddock and Scott Hobert, an education direct support professional (DSP), share their insight on Cade’s most recent accomplishments.
ade Brademeyer transitioned into our classroom in the spring of 2012, as he was finishing the 5th grade. He was a student in our classroom during the past two school years, as a 6th grader and then as a 7th grader. During that time we watched Cade grow up and mature before our very eyes. He is an exuberant young man with an engaging smile and an appealing gleam in his eyes. Like many teenage boys, he likes to be silly and mischievous at times. He loves numbers and words.
Perspectives on equipping Anne Carlsen Center student for lifetime of success
During the two years in our classroom, Cade was an active participant in classroom activities and used his iPad to communicate and complete learning activities. Fascinated with how things work, he was our classroom “engineer.” He enjoys tinkering with gadgets that have buttons, levers or switches. He is intrigued by construction equipment such as skid steers, pay loaders, backhoes and cement trucks. No one enjoys elevator rides more than Cade! He loves the water, and swimming in the Center’s aquatic therapy pool is one of the highlights of his week. In addition to receiving educational services here at the Anne Carlsen Center, Cade has had the opportunity to attend some public school classes at Jamestown Middle School.
In 6th grade, he was enrolled in Language Arts and Social Studies. The following year, he took English 7 (grammar and literature) and U.S. History. Cade attends the middle school classes with a member of the ACC education staff. Through this experience, he has built upon a variety of skills: taking in the subject matter of each class, completing assignments and projects, taking quizzes and tests, and attending and participating in each class. Cade successfully completes these classes with support and accommodations implemented by his public school teachers, ACC staff and his parents.
The Gift of Summer Camp Thank you for your help in sending extraordinary children and teens to summer camp this year! Friends of the Anne Carlsen Center contributed more than $17,400 to our Summer Camp Appeal.
Cade loves spending time in the Anne Carlsen Center’s therapy pool. Here, he shares a fun moment with Troy Duven, the adaptive physical education teacher.
Cade spends part of each school day at the Anne Carlsen Center working on the Skills® curriculum, developed by The Center for Autism and Related Disorders (CARD). CARD has been a great fit for Cade. ACC staff uses the curriculum to assess his skills and develop the optimum approach for his learning. The CARD work has helped Cade increase his knowledge base in a structured and practical way. He has built upon a variety of skills, such as making eye contact, waiting, listening, identifying community helpers and safety/community signs, learning counting concepts, and communicating information using his iPad. Cade, his staff and his family are continually working to generalize these skills into his daily activities and experiences. This past summer, Cade made the successful transition into another ACC classroom. His 8th grade school year is off to a great start! He also continues to benefit from the speech, occupational and physical therapies he receives here at the Center. He has a team of people—including his loving and supportive family—working to make sure he maximizes his academic, behavioral and social potential.
As you can imagine, the costs of special equipment and activities at both our TechnoCamp and our social skills camps are high. Your financial support helps ensure that campers benefit from an assortment of adaptive equipment, tools and technologies, creative crafts and sensory enrichment, and counselors and guest artists with specialized training. The focus of camp is always on what our campers CAN do— and as we’ve seen, they can do so much! Thank you for supporting this important work and helping create beautiful smiles and memories to last a lifetime! We are grateful for your commitment and compassion.
Corby D. Maddock Classroom Teacher Scott Hobert Education DSP
In the next edition of The Ambassador, speech pathologist Rachel Coppin will share about her experiences working with Cade for much of his childhood.
Jamestown woman helps students with medical complexities enjoy life’s simple pleasures
he Anne Carlsen Center provides hospitallevel care to children and young adults with fragile medical conditions such as cerebral palsy, seizure disorder and spina bifida. While these individuals face many challenges, they are not defined by their medical complexities. Instead, each one is busy learning, participating in meaningful activities, and living every moment to the fullest. Maxine Schmautz, a residential direct support professional (DSP) at the Anne Carlsen Center, is passionate about giving these individuals every opportunity possible to embrace the richness of life. She and other DSPs work alongside registered nurses, licensed practical nurses, a respiratory therapist and other Center personnel to help keep everyone as healthy and active as possible.
A special mission
“God put me here to help take care of these kids,” she says. “I watch the progress from when they first come here to where they are now. It’s amazing.”
As she strives to make an impact, Schmautz has done more than open her heart. Her hands are often called into action. In addition to helping students with daily tasks such as washing, grooming, dressing, eating, and transitioning from wheelchair to bed, she has voluntarily sewn, crocheted or knitted countless items for students. “She has taken children’s clothes home to mend,” says Tabby Fletcher, the operations manager of the living center on campus. “If an item can’t be found or purchased for a student, she will make it.”
The 65-year-old Schmautz has devoted her entire life to caring for children. Thirty-two years ago she began a daycare operation in her Jamestown home. And then, 15 years ago, in addition to providing daycare services, she started working several evenings a week and every other weekend at the Anne Carlsen Center. “One of my daughters had worked there while she was in high school, and I had children of employees in my daycare,” says Schmautz. “I was very familiar with the great things that happen at the Center.” Schmautz has appreciated the extra income and how flexible the Center has been with scheduling. But what she has valued the most is the opportunity to make a meaningful difference in the lives of deserving children and young adults: “My favorite part is finding out what the students like … what makes them happy. I also enjoy connecting with the families.” Schmautz says she can’t imagine not being a part of the mission of the Anne Carlsen Center. So when, in 2012, she retired as a daycare provider, she continued working for the Center. Hope Schlosser holds the yarn while Maxine knits. When the scarf is complete, Hope will wear it on chilly days.
Because most medicallyfragile students utilize wheelchairs, the task of putting on winter gear can be a challenge. “I’ve done some adapting of winter coats by cutting open the back and adding a zipper or a tie string,” says Schmautz. “It makes it easier for staff to put on coats while students are seated in their wheelchairs.”
easy to spot the stuffed animals, televisions, pictures of family members, and posters of teenage heartthrobs. You’ll find sports memorabilia in Michael Gunderson’s room. One glance at the walls—and some days, his attire—tells you that Michael is a loyal New York Yankees fan. Schmautz goes out of her way to keep track of the Major League Baseball schedule, so that when the Yankees play, she can turn on the game for Michael. Even though he does not verbally communicate, Schmautz can “see it in his eyes and his smile that he understands what is going on … that his favorite team is playing.”
Affectionately referred to by many staff, students and families as “Grandma Maxine,” Schmautz adds a grandmotherly touch to all her interactions. She emphasizes, however, that she does not attempt to take the place of the grandparents in these children’s lives. Maxine Schmautz reads the latest sports news to In fact, she helps celebrate Michael Gunderson, an ACC student. those grandparents and assists students in writing When Schmautz discovered that one of the female letters and creating cards to mail to their grandmas students had a beautiful scarf collection, she went and grandpas. to work expanding that collection. She involves the These days, Grandma Maxine is also keeping busy student in the making of each scarf. “I’ll have her being a grandma to her 10 real-life grandchildren. She hold the yarn, and I do the knitting,” she explains. helps take care of them during the week while their “Right now I am knitting a scarf with pompoms parents are at work. Weekends are devoted to her work for her.” at the Anne Carlsen Center. Recently, a male student in the medically-fragile Schmautz puts time, energy and love into all of her wing became a big brother. Schmautz and the student worked together to give a special gift to his new sibling interactions with students, as she works to help them overcome challenges of their disabilities, achieve greater —a beautiful crocheted baby blanket. independence, and experience the fullness of life. All the personalized touches she adds have made Since its founding, the Center has provided holistic Maxine Schmautz an extraordinary person in the care, meeting physical, mental, emotional and spiritual lives of students. “They love her. They respond with needs. Schmautz is dedicated to addressing each of smiles,” says Fletcher. “Her presence is calming for these important areas; she has prayed with children the children.” when the parents request it. Individualized approach As she seeks to enhance the well-being of medicallyBedrooms in the medically-fragile wing are equipped fragile individuals in every aspect of their lives, Grandwith adjustable beds, monitoring devices and—in ma Maxine is helping ensure days filled with hope and many cases—oxygen and suctioning equipment. In the happiness. “These children were put on this earth for midst of the specialized treatments and 24-hour obsera reason,” she says, “and I am blessed to have them as vation and care, there are many signs of normalcy. It’s part of my life.”
hen you think of a library, you might picture rows of floorto-ceiling shelves filled with books. A library of another kind is currently being developed by the Anne Carlsen Center (ACC) … one that is more than a place; it’s also a life-changing concept.
adulthood. Parents are given advice regarding toys and games that coincide with their child’s skills and interests. In addition to gaining ideas for toys to buy in the future, families enjoy easy access to equipment and technology that can be difficult to find and expensive to buy. • Play Sessions are safe and welcoming play environments in which Lekotek trained family play specialists select toys and guide play sessions. Family play specialists are experts in analyzing the needs and abilities of each child and are knowledgeable about traditional and specially-adapted toys.
It’s called Lekotek. The concept comes from Sweden, with “lek” meaning play and “tek” translating to “library.” Lekotek was started in the United States more than 30 years ago with the goal of making the world of play accessible for all children, especially those who have disabilities or special needs.
• Family Involvement is a cornerstone of the Lekotek philosophy because the family unit has a significant impact on the child. During the play sessions, parents, siblings, grandparents and family friends learn how to engage with their loved one using toys, games and activities. The toys and materials go home with the family at the end of the play session, so the home can be an inclusive environment where every member of the family participates in play.
The National Lekotek Center is in the Chicago area with affiliate sites across the country. The Anne Carlsen Center has entered into an agreement with Lekotek to become an affiliate site, making it the first in the region. “Play is the way kids learn, develop skills and reach milestones,” explains Stephanie Nelson, an ACC Ideation Center specialist and speech-language pathologist. “Children with disabilities may have cognitive, physical, communicative or sensory limitations that could hinder their engagement in play and in accessing typical toys and play activities with other kids.” Time to play Many families of children with disabilities struggle to find toys and activities that are appropriate, accessible, motivating and enjoyable for their child. The Lekotek model, with its three components, provides a solution: • Family Toy Lending Libraries include a large assortment of adapted toys and activities for individuals ranging in age from infancy to
The Ideation Center works to equip children and adults for success
“Toys and play empower children to reach their potential and increase their inclusion within the family and community,” says Nelson. “Through play, children develop so many skills: speech/language, social communication, fine motor, and motor to name a few.” In November, 20 ACC staff from across the state will receive Lekotek training. The pilot Lekotek program is being developed within the Anne Carlsen Center Grand Forks Community Based Services location, with services projected to begin there by the middle of December.
“Make and Take” The Anne Carlsen Center works to promote inclusion of individuals with disabilities in a variety of other ways. The “Make and Take” educational sessions, for example, are designed to equip parents and professionals with the tools they need to help children and adults reach their full potential. Participants in these two-day trainings are provided with the materials and time to create a variety of projects. While several examples and ideas are provided, participants will decide what to create to meet their own needs. “Make and Take is so effective because parents and professionals can implement what they have learned right away,” says Marcy Szarkowski, an Ideation Center specialist and special education strategist. “With the ability to learn about strategies and tools—and then to create those supports specific to their child or student’s needs—the training is very meaningful and relevant.” In the Recreation and Leisure session, for example, the Make and Take team presents low-tech solutions for recreation and leisure activities for individuals with disabilities. An adapted dice shaker, card holders, and beach ball games are among the tools that are shared. Participants create their own tools to use with their child or student/client and receive feedback and guidance from instructors along the way. In the process, participants gain a framework for identifying and implementing a range of ideas to support individuals in these activities and eliminate any barriers (physical, social, cognitive) to involvement. The key to effective tools often involves appealing to multiple senses. “Everyone has their own unique learning styles—preferences for how they take in and retain information,” explains Connie Lillejord, an Ideation Center specialist and occupational therapist. “A multisensory approach in teaching uses auditory, visual and kinesthetic pathways. If a child has problems taking in information with one of their senses, a multi-sensory approach allows that child to learn the information another way.” Many of the Make and Take tools increase performance and success in academic areas, such as reading, math and writing (motor and composition). “One of the teachers reported back that she had a student who hated handwriting—he really struggled in this area,” says Lillejord. “One of our tools was having the participants make clay writing trays that offered resistance to the kids as they used a little extra muscle to write/draw
The Anne Carlsen Center’s “Make and Take” training team: Stephanie Nelson, Connie Lillejord, Marcy Szarkowski and Jodi Thoreson.
through the clay. She said that he is really enjoying handwriting now with his new writing tray.” The Anne Carlsen Center is dedicated to providing the tools and encouragement to help individuals of all ages write their own success story. It’s all part of the mission to make the world a more inclusive place where independence is a gift to all. The Ideation team at the Anne Carlsen Center offers services to individuals with disabilities, organizations, schools and families in the region. Services include assessments, consulting services, System Navigation, The Learning Academy and conferences. The Ideation team is also responsible for internal staff training and development of employees. For more information about the ACC Ideation Center, please contact Jodi Thoreson, coordinator, at 701-952-5127.
Here, professionals and parents create a variety of tools to bring home or to their workplace. They use the materials and guidance provided by the ACC Ideation team.
Bike camp makes dreams of riding a bike independently come true
or six weeks Tate Johnson was nervous about camp. His mom, Danyel, had signed him up for the iCan Shine’s iCan Bike Camp hosted over the summer by the Anne Carlsen Center (ACC). Ten-year-old Tate, who has autism, had been unable to lose the training wheels on his bicycle. His low muscle tone and sensory processing difficulties were making it difficult for him to achieve this milestone. Tate stopped resisting when “we explained how, when we travel, it would be nice if we could rent bikes together as a family,” says Danyel. “We also reminded him that without training wheels, he would be able to pedal faster.” The Fargo boy was all smiles August 11–15 as he pedaled around the arena at the Moorhead (Minn.) Sports Center, the location of the iCan Bike Camp. The camp uses adapted bicycles designed by a mechanical engineer, a specialized instructional program and a highly-trained staff to teach individuals with disabilities how to ride a conventional two-wheel bicycle. “There is definitely social motivation involved in obtaining this goal, which is good,” says Danyel. “Tate’s older brother rides a bike. All the kids in the neighborhood are riding their bikes. He sometimes asks, ‘Why do people talk about my training wheels?’” Pedaling with purpose Eighteen riders from across the region, ranging in age from 8 – 16, participated in the iCan Bike Camp. They learned how to balance, pedal, steer and take off on their own. Each rider attended the same 75-minute session each day for five consecutive days. Two volunteer “spotters” provided guidance and encouragement to each participant.
Tate Johnson pedals confidently around the Moorhead Sports Center.
“The Anne Carlsen Center wants to help more people get moving and get active,” says ACC’s Kevin Sandness, the camp director. “The mission of the Center is to make the world a more inclusive place where independence is a gift to all. When it comes to riding a bike, it’s a big deal when a child is able
to do it on his or her own. They suddenly have the freedom to go where they want to go, and it’s easier for them to be included by others.” For a while, 8-year-old McKenzie Kainz of Moorhead refused to ride her bicycle. She was noticing that her friends in the neighborhood were no longer using their training wheels, while she still was. The physical impairments caused by her cerebral palsy had been obstacles in reaching this goal. “I was thrilled to learn the camp was coming here,” says McKenzie’s mom, Kim. “Everyone takes for granted that kids learn how to ride a bike. It was easy for our boys, McKenzie’s older brothers. She has balance issues and has been nervous about bike riding.” Over the course of the 5-day camp, staff adjusted the adapted bike that McKenzie was riding to challenge her and gradually introduce more instability. By the end of the camp, she was confidently riding her own bike – without training wheels.
Making a difference The success of each iCan Bike Camp depends heavily on volunteers. Volunteers provide physical, emotional and motivational support to their assigned rider. The Benson family, owners of Paramount Sports in Fargo, volunteered as spotters each day of the camp. Craig and Karla and their 20-year-old daughter, Abbey, enjoyed the opportunity to be involved in a life-changing event. “This is fun!” says Karla. “The kids are so nice. They want to be here; they just want to be like every other kid.” A handful of Anne Carlsen Center employees spent part or all of the week helping with the camp. “This is awesome. I want to help these riders achieve their goal,” says ACC’s Andrea Benson, during a brief pause in the action. “The rider I’m paired with is getting faster and better at balancing.”
Mike Heikes of Fergus Falls, Minn., spent time at the Alyssa Koenig, an ACC student, Trent and Lisa Bielejeski from camp educating parents about receives assistance and encouragement from Jillian Bonior, an iCan Bike Barnesville, Minn., watched helmet safety. The crossfloor supervisor. in awe as their 9-year-old son, country bicyclist, who suffered Noah, pedaled confidently a severe brain injury in 1982 around the arena. “This is his first time on a bike,” after being hit by a car while riding his bike, has says Trent. “For him to do well at this, it has to be given thousands of helmets away. He says many something he enjoys, and they are making it fun.” riders do not wear their helmets properly. “And if a helmet isn’t worn right,” he says, “there’s a good Anna Mickelson, a 16-year-old Anne Carsen Cenchance it won’t do any good.” ter student, was a little overwhelmed the first day of camp. “Putting on the helmet was a challenge Great Northern Bicycle Company and Specialized initially. Getting on the bike was hard, too,” says Bicycle Company donated enough helmets for evDiane Brandenburger, an ACC direct support ery rider. Beyond Boundaries Therapy and Up with professional. “It didn’t take long before she became Downs were event sponsors, and the Moorhead comfortable with getting on the bike and putting Sports Center provided the use of their facility free on the helmet.” of charge. Anne Carlsen Center supporters donated money to sponsor riders and provide bicycles for Brandenburger, a few days into the camp, was those unable to afford them. amazed by Anna’s progress: “Now, she grabs the helmet and goes. She has been so excited and Creating confidence ready to come here each day. She stands at the Learning to ride a bike is a major accomplishwindow waiting, and then runs out to the car.” ment—one that Jillian Bonior, an iCan Bike floor Continued, next page
supervisor, says builds confidence and boosts self-esteem. “Everyone is successful in their own way and makes improvements in their own way,” she says. “Everyone leaves smiling. That’s what I love about it.” By the end of camp, 14 of the participants were riding a conventional two-wheel bicycle independently. The remaining four riders had made tremendous progress toward independent riding and were riding without training wheels. In addition to instilling confidence in riders, the camp has a positive impact on parents, as they watch their children overcome obstacles to reach an important milestone. Kim Koenig of Fargo enjoyed cheering on her 8-year-old daughter, Alyssa. Alyssa, who is a student at the Anne Carlsen Center, had become comfortable riding her bicycle with her training wheels, but Kim says, “We were skeptical about her being able to lose the training wheels.” The camp provided a safe, supportive and fun environment for Alyssa to work on her riding skills and gain confidence. Although overwhelmed at times, she made significant progress each day of camp. “To see the excitement on the faces is priceless,” says Kim. “It’s really special to be here to see and share in the progress.”
Your Support. Their Success. Today there are more than 1,800 children, adults and families receiving Anne Carlsen Center (ACC) services. Your generous giving to our Back to School Appeal—more than $13,400—will help provide educational opportunities in communities across the state. Matt Beilke, an ACC Day Support client, dedicates his time and talents to educating others. Living with cerebral palsy, he has encountered plenty of obstacles and naysayers, but he isn’t letting anything or anyone stop him from living a full, meaningful life. The Anne Carlsen Center is giving Matt the tools and training to advocate for himself—and for many others. A guest speaker at schools and universities, he is working to educate young people about the dreams and talents of individuals with disabilities.
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
Board of Trustees 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.
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.
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 email@example.com annecarlsen.org/how-to-help
When the world sees all our students and clients are capable of, attitudes are changed in powerful ways, and individuals with disabilities are recognized as valuable members of society. You mean so much to the children, young adults and families we serve. Thank you for your partnership in our unique mission, as we work together to make the world a more inclusive place where independence is a gift to all.
Eric Monson Chief Executive Officer
Margie Johnson Human Resource Director
Marcia Gums Chief Operating Officer – Community Based Services
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Tim Eissinger Chief Operating Officer – Jamestown Campus Allan Hartmann Chief Financial Officer
Patrick Kirby Chief Development Officer Kresha Wiest Director of Management Systems
development Department — 701-952-5167 Patrick Kirby
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