Hannah (center), with parents Kim and Pete

Parents know that they need to be hyper-vigilant with their young children. It only takes a second for a child to get into trouble. Kim and Pete Schwab understand more about hypervigilance than most parents.

Kim and Pete have two children. Their oldest, Katie, is a social worker who is married with a daughter. Their youngest is Hannah, who is 27 years old. Hannah has been living in an HCO home with three housemates since August of 2018. She is generally happy, willing to go anywhere, has an infectious laugh, and is very loving. Her ability to be affectionate with people she is familiar with developed when she was about 11 years old, when she unexpectedly began to recognize certain people as ones she loves.

Hannah has been diagnosed with chronic encephalopathy. She was declared healthy at birth, but her mother noticed early on that Hannah couldn’t hold her head up by herself. Feeding her was difficult and time-consuming since she had limited sucking reflex. At three months old, Hannah was referred to Gundersen Clinic for further observation and testing. Her feet and legs were not growing normally, so she began years of physical therapy. Many medical professionals predicted that Hannah would always be on a feeding tube and would never walk.

When she was around six years old, Hannah’s parents hired caretakers for Hannah to come into their home. For many years, she had the same caretaker, Susan Sagan, who was a godsend, Kim says. After that, the Schwab’s found wonderful help from nursing students at Winona State University, and from Viterbo in Brownsville. Nursing students loved working with Hannah’s easy-going personality.

Hannah, although in her late twenties, has the comprehension of a 1 ½- to 2-year-old girl. It is largely due to the Schwabs’ determination that Hannah is not on a feeding tube and can walk with a little help. One doctor, Dr. Wintersteen, believed what Kim and Pete believed, that Hannah would learn to walk. She helped them work towards that goal, and she did learn to walk at age 11.

When Kim and Pete moved the family to Brownsville, Hannah worked with ABLE (A Brighter Living Environment) and moved into an ABLE home in Caledonia at the age of 21. They, too, were determined to see Hannah’s abilities grow.

Hannah has had six orthopedic surgeries, requiring casts on both legs and feet that had to be kept on for 6-8 weeks. She has received extensive occupational therapy, as well as therapy for feeding issues and helping her to use her hands.   She also received equine-assisted therapy at Winona’s Big Valley Ranch. A horse’s gait moves the rider’s hips and pelvis in the same way humans move to walk, promoting strength, balance, and flexibility in the rider, as well as a sense of how to move oneself forward.

Kim and Pete have always kept Hannah active, pulling her in a cart behind their bikes or putting her in a backpack on hikes. She loves the outdoors and especially loves going out on the river. She revels in the noise, speed, and wind of the moving boat, which she likes to be driven fast! The family also goes on short and long vacations. They have been to Florida many times, as well as San Antonio and Albuquerque, and are planning a trip to New Orleans.

The only restrictions to Hannah’s activities have to do with weather. Cold weather is off limits, as Hannah refuses to wear a hat or mittens. She likes to have her hands free. In hot weather, she can become overheated and ill.

These days, Hannah can walk for thirty minutes by herself at her own pace. She likes to ride her bike, play catch, and swing on swings. She needs someone with her at all times, however, due to poor balance on uneven surfaces, such as changes to and from carpeting, thresholds, and turns. Hannah has cortical blindness that renders her almost totally blind at times and gives her limited vision at others. She has to be helped up and down curbs and steps. Sometimes she walks with a walker or pushes her wheelchair or a shopping cart. She does not have a developed sense to catch herself when she falls, so caretakers must be vigilant.

Now the Schwab’s are moving back to Winona, and Hannah is living in an HCO home. She is learning to eat more things. Continued problems with chewing and swallowing, plus reflux, as well as having no pincher grasp means that she has to be spoon-fed. She likes salty things, especially chips, which is something she can feed herself if they are bite size.  She can pick up food using her whole palm of her hand.  Her reflux is under control, but she needs to be encouraged to be hydrated and will only eat and drink if seated at a table. Up until the age of 15, she didn’t seem to register either hunger or thirst.

Hannah’s sense of hearing is sharp. She enjoys listening to television and playing with toys that make noise. She also likes her radio, which she can operate by herself by pressing a switch in her room, giving her independence and choice. Her favorite music is country, which Kim says was introduced to Hannah by a caregiver. Kim says she and Pete weren’t country music lovers before, “but we sure are now!” Hannah’s favorite country artist is Shania Twain.

She still attends a day program in La Crescent at ABC Works. In April of 2018, she fell and broke her leg and ankle, which required a full cast on her right leg for 6-8 weeks, followed by a boot for 3-4 weeks. She then somehow broke the plate in her leg and had to go back to a full cast for two months. She has just recently begun walking again.

It can be difficult for parents to make the transition to a less hands-on life that have been on a journey like the one the Schwab’s have been on with Hannah. Hannah has adjusted well to her HCO home, while still spending time with her family each week and on vacations. In order to plan for all possible situations, Kim and Pete developed “Hannah’s Life Plan” – a three-ring binder that contains all the information, down to the smallest detail, that a new caretaker would need to keep Hannah happy and safe.

In a section entitled, “Hopes and wishes for Hannah,” they wrote:

“Even though Hannah is in an adult body, she will always be a young child. As Hannah’s parents, we have learned to accept this fact. However, Hannah is still a special person. It is sometimes said that the simplest things in life are what are most important. In Hannah’s case, the simple things in life are all that matter to her and this isn’t a bad thing. Hannah is always happy and willing to go along with pretty much anything. She has an easy-going personality and doesn’t have a mean bone in her body. Hannah never cares what she looks like, and she never worries about money. She leaves most of life’s problems up to others, and she starts every day with the idea that it will be a good day.”

The Schwabs, generous contributors to HCO in the past, recently donated an accessible swing set and concrete walking path to Hannah’s house, which Hannah and her housemates are now enjoying.

by Katelyn Keller, Marketing Intern

Ballet Hispánico’s four-day residency in Winona included an adaptive dance workshop for Home and Community Options’ clients and support staff on October 2nd in the Blackbox of Saint Mary’s University Page Theatre.

Eduardo Vilaro, the artistic director of the company and former dancer himself, led the session with overflowing enthusiasm from the center of the room. He spoke with an upbeat voice that filled the black-walled space with evident passion. The session began with warm-ups, then simple movements such as lifting the left hand up, then “hiding” it, then the right, and “hiding.” This progressed to combining the movements of the hands, then to standing up and learning more moves such as the shimmy. Combinations of these movements led to dances such as the cha-cha.

Applause was abundant throughout, while learning a new movement, during combinations, and at the end of a dance. At one point, when everyone else had stopped, one lady was still going. Everyone was clapping for her as Vilaro noted her enthusiasm. This lady became Vilaro’s partner for demonstrations later on, and he often asked to more applause “Isn’t she great!”

The other dancers of the company also paired up with certain clients or danced with a group, interspersed throughout the room, with evident joy. A couple of the dancers interviewed after, Gabrielle Sprauve and Omar Rivera, both expressed their love for these sorts of interactions.

Rivera shared that one of the highlights of the touring experience is “going into communities and teaching and sharing the art of dance and especially Latin dance. It’s fun; they get to move their hips. They get to shimmy and just feel good. So it’s always good to make people feel good.”

Sprauve also expressed enthusiasm about such workshops. She described this one as a “treat.” and said that the company “appreciate[s] being able to do classes like this, and they’re so much fun.” She repeated, “They’re so much fun. Everyone that came had a blast and had an amazing partner. It was just a great time.” She thinks that one of the best parts of being in the company is the community outreach work, bringing people “some excitement, something different.”

A diverse age range participated, younger kids of middle-school age, as well as middle-aged and older people, some of whom were able to participate while seated in chairs, as well as a couple of others in wheelchairs. HCO staff pushed a young gentleman in a wheelchair so that he could fully participate in the spin. Other staff were guiding people through the movements. A total of at least thirty individuals supported by HCO attended, along with a number of HCO staff.

There was a refreshing lack of self-consciousness and awkwardness. As Rivera summarized, the experience was “really enthusiastic and [it was] fulfilling to see the community come together and just dance and enjoy the energy from each other.”

Mikayla Jonsgaard, one of the younger participants, said that she would do this again and that she had come because it’s fun. She likes dancing at home with music, having a preference for the pop genre. A current favorite of hers is “Panini” by Lil Nas X. Her favorite part of the class was learning the dance moves, and her favorite move being the shimmy, which she demonstrated.

One of the older middle-aged participants, William Arrick, also expressed his excitement about the session. He described the workshop as “the perfect dance” and mentioned that his favorite part of the class was the cha-cha. He then launched into a discussion about Elvis with various demonstrations. He regularly attends HCO’s Monday Adaptive Dance sessions.

In answer to the question of whether this class was much different from what his company usually does, Vilaro emphasized with enthusiasm, “No, no. No, we are,” and he gave a slight pause, then emphasized with further passion, “we are blessed to have the ability to do community work.”

Vilaro went on to give a brief background about the foundation of the company. During the ‘70s, Tina Ramirez had started the company for kids in the inner city of New York who wanted to avoid drugs and gang life. Ramirez trained these young people to become professional dancers. And so, Vilaro describes, “we are always focused on community and community interactions. So we do everything from this type of class to, you know, training dancers. It’s a wide, diverse amount of community service work.”

There is an immense cultural significance to the company as well, being deeply rooted in the Latino culture. The company’s purpose involves bringing individuals and communities together to celebrate and explore Latino culture through dance. The company aims to be a role model in and for the Latino community, inspiring creativity and social awareness. Vilaro said that everything he taught during this class had to do with the Latino culture.

Sprauve and Rivera made it clear how this heritage played a significant role in what drew them to the company. Sprauve said that she saw the company perform at the Joyce Theater and “fell in love,” and then auditioned in her senior year. She explained that she “really wanted to join the company just because for years [she had] been trying to find a place where [she] could connect with [her] culture but also could dance.” And, she concludes, “the best place was Ballet Hispánico.”

Rivera shared a similar story. He “fell in love with the company when [he] first heard of them.” A number of his friends who were students in New York City had seen the company perform at the Joyce and the Apollo. They told Rivera to look into the company. And so, Rivera dug for information about the company and “fell in love with the overall theme and aesthetic.”

The cultural aspect plays a major role in this class’ connection to Saint Mary’s. Theresa Remick, Managing Director of Saint Mary’s Performance Center, describes Saint Mary’s Page Series as something “really here to be able to connect the community, which we consider to be Winona and Saint Mary’s, to cultural experiences that aren’t here otherwise…. We’ve looked for things you wouldn’t otherwise see…. And frequently, that takes the lens of a company or artist who works in a cultural specific way.” She said that the department “really look[s] for ways to help Winonans and Saint Mary’s students have experiences that will expose them to other cultures, other lifestyles, as well as just really high-quality art.”

Remick met Vilaro many years ago when she was working for National Arts Strategies when Vilaro was in the chief executive program. She “remembered how wonderful [his company’s] work was and that was a lot of the reason why [Saint Mary’s] decided to bring [his company Ballet Hispánico] in.”

HCO has already partnered a number of times with Saint Mary’s, and Remick thought that Ballet Hispánico would be another good opportunity to do so. Remick said that ever since she’s been at Saint Mary’s (four and a half years, to date), she’s been working with HCO’s Events Coordinator, Lynette Johnson, and Communication Coordinator, Ashly Bissen, to develop additional ways to partner.

For this experience with Ballet Hispánico, Christine Martin, Saint Mary’s Dance Residency Coordinator, had contacted Johnson at the end of June about Ballet Hispánico coming to Saint Mary’s. Martin had asked if such a workshop would be something of interest to HCO. And this idea became a room overflowing with positive energy and community connecting through dance, which, Arrick said, “can change the whole world.”

Mary Rinn is a cute, silver-haired woman with a nice smile and a winning manner. She is 61 years old, going to be 62 on October 16, “but not 62 yet!” Her birthstone is pink tourmaline, which works out perfectly since her favorite color is pink. She grew up on a farm in Lewiston with lots of brothers and sisters. “Too many to count!” she says. Too many nieces and nephews to count, too. She enjoys spending time with her family. “They always spoil me,” says Mary.

On the farm, they had two dogs, Sport and Blackie. It was fun growing up there, she says. One time, her dad let her drive a tractor, and apparently once was enough. Her mother taught her a lot of things and was a good cook. Mary especially liked her mother’s homemade ice cream, “all kinds.” Her favorite ice cream now is chocolate and caramel mixed in a bowl.

Mary has lived at the 1452 program for quite a while, and she likes it there. She has her own bedroom, decorated in pink, and her own television. She even has a housemate who is also from the Lewiston area and was a classmate.

On a typical day she wakes up at 6 a.m., but she sometimes goes back to sleep until 7:30 when she has to start getting ready for work. A bus or a car comes to take her to ORC, where she works doing laundry. She likes folding the laundry the best, and she has a lot of friends she works with. One close friend at work is from Lewiston and knows all of the Rinns. It’s nice to have someone to hang around with on breaks, especially someone who is from her home area. Even though Mary is creeping up on retirement age, she says she isn’t ready to retire yet or even think about it.

After work, Mary is busy cleaning out her lunchbox, packing a lunch for the next day, and spending time on her stationary bike. She exercises every day, but isn’t much for outdoor exercise, preferring to stay inside.

Mary helps with some cooking, even though she is a picky eater. She doesn’t like spicy food, vegetables, eggs, or noodles. What she does like is all kinds of chicken. She likes chocolate cake with chocolate frosting, and she also likes to drink Mountain Dew.

She enjoys shopping and going out to eat now and then, and her favorite restaurants are Texas Road House, Jefferson’s, and Culvers drive through. She also likes picnics, whether they are at the Levee, Prairie Island, or just in the back yard.

Mary says she has “zero” pets now, though she and her housemates like to get visits from Richard the Cat, who belongs to one of the staff.

Sometimes Mary will watch a movie with her housemates in the evening or watch her favorite shows on her television in her room. She likes game shows, everything Elvis, the movie “Grease,” and likes Hannah Montana songs. Her and one of her housemates are Vikings fans, and they often watch the games on TV. Mary went to a Vikings game once in the Twin Cities, and they won! “All for me!” she says.

With work, hobbies, and all of Mary’s interests, there is always something to do. She is always happy to spend time enjoying life close to her friends and family.

Diane Spalding (center), mother of Shane and Luke Spalding, who are both autistic.

Diane Spalding has two sons, Shane and Luke, who have received services from HCO over the course of their lives.

Shane, her older son, received in-home services when he was younger, as did Luke. When Shane was born, he had seizures due to a hemorrhage on the brain from the stress of labor. The doctors put him on powerful medications to control his seizures, but they came with their own downsides. It was almost impossible to gauge an infant’s daily drug levels and checks were only done every ten days to two weeks, so the risk of overdosing was a real concern. Fortunately, he was done with those treatments at nine months old.

When Shane was two years old, Diane took him to Early Childhood Family Education (ECFE), through the Winona Public Schools when she noticed that he was not speaking well. It was there that Gail Opatz connected Diane with Winona County Social Services and Diane heard about HCO. At the time, Luke was a newborn and appeared to be developing normally.

Diane learned that in order to receive services for Shane, she would have to have him assessed. They went to Gundersen Clinic, which at the time was the place to go for such assessments. Tests were done for three days, about six hours a day, Diane recalls. They tested speech, reactions to sounds, mobility, eye movement, everything. Once the results of the assessment came back, Shane was able to begin receiving services.

At about 15 months old, Diane began noticing that Luke was regressing. He stopped talking, stopped playing with toys, and wouldn’t look at his parents. Practically everything sent him into sensory overload. He didn’t want to keep clothes on. He was sensitive to heat, cold, and sound. He didn’t sleep well. His parents had to work hard just to be able to touch him. Diane contacted Gail again to have Luke assessed, and he began receiving HCO services when he was around two and a half. He remains non-verbal, except for a few words that you can understand if you know him well.

After a divorce, Diane became the sole caregiver, but had to return to work, so services for the boys were vitally important. Diane grew up in Dakota, where her family owned an apple orchard. Her family was large – ten brothers and three sisters. All but one of her siblings are older than Diane, so they were all involved with their own families when Diane was struggling with the boys.

The care offered by HCO meant that Diane was able to work to support Shane and Luke. When the boys went to bed, caregivers would be there to watch them when Diane went to work at 8 p.m. at the Red Men’s Club. She would return home late and get a few hours of sleep before the boys awoke around 4 or 4:30 a.m. She says she doesn’t think they even knew she left.

Life with two autistic toddlers wasn’t easy.  She was constantly tending to them, even more than is required for most toddlers. There were numerous appointments to keep and therapies nearly every day. Since the boys didn’t play with toys or entertain themselves with imaginative play like most toddlers, it was up to Diane to entertain them. Movement seemed to calm them so she would often take them outdoors. She would pull them in a wagon or on a sled, go for bike rides, anything physical that they could do or Diane could do for them. “If you take imaginary play away, there isn’t much else,” says Diane. There were times when she was outdoors with the boys in the morning when it was still dark out. She was tired most of the time. “But I have a lot of flower gardens, because we were outside all the time!” she says.

“Patience isn’t something you have, it’s something you grow.”
– Diane Spalding

Growing up, the boys got along well, though they had their moments. Shane is prone to repetition, and at times, just couldn’t stop picking on Luke. Luke’s response was to act out, sometimes becoming violent. Disciplining the boys was difficult because their acting out wasn’t intentional. They often couldn’t understand (and didn’t respond to) disciplinary tactics that typically work with most children.

“Some days,” says Diane, “you’d just have to ride it out.” At other times, she found it necessary to step outside and take a deep breath or two. When the two boys were both at home and receiving services, Diane shared that it sometimes felt like she had lost all privacy. There was always someone in the house. “It was hard,” she says, “and stressful.”

Shane has responded to treatment and therapy quite well. Now 24 years old, he works at HyVee five days a week for five hours a day. He has the functional level of a 13-15 year old, and leads an active, happy – if perhaps at times, lonely – life. He likes his job and feels that he is a productive member of the community. He is able to read and speak, but has limited interests and struggles socially. He is able to spend time comfortably with both his parents and still receives some services at home through Legacies. Diane says it always seemed Shane has been too advanced for many programs for people with disabilities, but not quite advanced enough to join more mainstream social activities. He does have a few friends he texts back and forth with, loves WWE wrestling, and would like to get married someday. He has a dog and two cats, adores animals, and would be at a complete loss without a pet.

Luke, on the other hand, was resistant to therapies. He wants people to understand what he is trying to communicate, but won’t use any of the communication devices available to the boys. The family’s first DynaVox, a device designed to assist individuals who are unable to communicate reliably with their own voices, came with a price tag of $10,000. The cost was not covered by insurance, so Diane had a fundraiser at work to pay for it. The second DynaVox cost less: $4,500, but Luke wouldn’t use it. He also would not use the Picture Exchange Communication System (PEC), in which the individual is able to hand out picture cards that relate to what the individual is thinking or wants to say. When the boys were in school, the family had to use four different iPads, since each had to stay at a designated place – school, home, therapy, and such.

As a child, Luke was prone to fevers and had violent outbursts.  As he matured into an adult – he is now over six feet tall – those outbursts became more difficult for Diane to handle. Once, he began acting out in the car, so he and a staff had to pull over. Diane was nearby and was on her way to assist when a county policeman saw them standing outside the car. When he stopped to make sure everything was okay, Diane was impressed to learn that county officers had been receiving training over the past few years on how to best support and diffuse situations for people with disabilities. The police officer asked how he could help without making the situation worse, and he was able to help Luke de-escalate without incident. He even escorted everyone back to the home to make sure that they got back okay.

After one particular episode four years ago that resulted in Diane becoming injured, the county called with the news that there was an opening in an HCO house that could be a fit for Luke.

“That was a hardest decision I’ve ever had to make,” says Diane. “I still cry.” She knew that he never meant to hurt her. “He has empathy,” she says, “he always feels bad after he has an outburst.” He knows some sign language, and if he hurt Diane he would sign “Sorry” over and over, start acting silly, seeking affection from her. Diane knows that his outbursts are generated from frustration and fear, not animosity.

Many people know Luke from the piles of brush and leaves he often takes with him while walking or biking in the community, and they often offer to help or just say hello. “We live in a truly generous community,” Diane says. “Everyone is so kind, and respects his differences.”

Despite the challenges, “I’ve never regretted staying in Winona,” Diane shared.  She says the behavioral therapist and some people with the school call him “Three Try Luke,” because it always takes him three tries to do a thing, but once he accepts the change, it’s okay. When Luke finally boarded the bus that took him to Woodland Hills, Diane knew that it was the moment she had to cut the cord. In order to help him get settled, she spent a few weeks away to give him time to adapt to the change.

Because Luke has difficulty with change, staff have used videos of Luke making transitions (for example, when he had to switch from middle school to high school) to get a better understanding of what triggers his outbursts. This helps those who are supporting Luke avoid similar triggers in the future, and as well as understand what behaviors are effective in helping calm him.

Over time, Luke’s outbursts have lessened. “It used to be that if he’d get worked up, he’d have to go all the way up before he could come down. He uses CBD oil to take the edge off, and now he can stop himself before he gets there.”

Though he doesn’t live with her anymore, Diane still sees Luke four or five times a week. He often comes to work with her, where he takes out the trash, turns on the lights, and helps her switch out the gambling machines. “He loves to have a purpose,” she says. “If you give him something to do, he’ll go and go.” He likes to play games and is a whiz at jig-saw puzzles. He comes to Diane’s house regularly to get his bike (where it is kept), and goes on bike rides.

Diane says Luke is “set” at his home with HCO and likes it there, but she is still working on the right solution for Shane. She wishes that there were more opportunities for Shane to socialize, and because he would like to continue living in their house but he isn’t able to be alone all the time, she’s looking for ways to help him to continue living at home.

In the meantime, Diane has met a loving and supportive man, Ed Urbick, and she continues to spend much of her time watching both her boys grow and work towards more independence.

Duane grew up in Rushford, MN. He is one of six children, alongside siblings: Terry, Kenny, Dennis, Nancy, and Sheila. His oldest brother, Terry, lives in Boston.  Duane recalls that his first airplane trip occurred on a visit to see Terry, where he also took in a Red Sox game and visited the zoo.  Kenny lives in Rushford, where the family still spends their holidays. Duane’s twin brother, Dennis, lives in Fountain City, and Nancy lives in Winona. Their youngest sister, Sheila, passed away in 2016.

Growing up, he and his siblings had a dog, three cats, and twelve rabbits. Duane remembers his father buying two rabbits, a male and a female, and pretty soon there were fifteen baby rabbits, which soon evened out to twelve. He has a picture of himself with his brothers, Kenny and Dennis, each of them with a cat. When asked their names, he said, “Steve, Mike, and Jeff.”

Duane played sports growing up, and physical education was his favorite time of the school day. He liked playing basketball, and once played on a baseball team that went 20 games without a loss! Though he says he’s too old to play sports now, he is still an avid fan and follows the Twins and the Vikings closely. He enjoys collecting memorabilia, has been to numerous Twins games, and is planning another trip there soon. He also likes to watch the Super Bowl and then order the DVD to watch it again.

But as much as he likes sports, there is something he likes even more. In fact, “like” might be too tame a word. Duane loves country music and especially is a fan of Elvis Presley. He has traveled to Graceland in Memphis, Tennessee 17 times, and sports Elvis shirts, pins, bracelets, and rings. His favorite Elvis tune is “Blue Hawaii.” He has also been to Nashville, where he has seen Johnny Cash and June Carter Cash, George Strait, and more recently, Kenny Chesney.

Closer to home, Duane has been to Country Fest in Cadott, Wisconsin, and Ashley for the Arts in Arcadia. Another Wisconsin draw is The Dells, where he likes to go on the duck boats.

He has lived at Iverson Court since 1989. He’s trying to do more of his own cooking and can make a mean tuna noodle hot dish, but he also likes TV dinners and is part of a meal prep program once a week. His HCO staff member, Victoria, jokes that if bubble gum could be considered food, it would be his first choice. His favorite brand of bubble gum is not carried at Kwik Trip any longer, he says, so he will have to go to Walmart.

He has quite a few friends at Iverson, some of whom work with him at ORC. Duane takes the bus to ORC, where he works in shredding papers and folding towels, the number of which he keeps track of with a hand counter.

In his free time, he likes to watch sports events, the Country Channel, and the news. He and his friends go out to dinner, his favorite being Bub’s and Jefferson’s, and then to the movies. He also participates in fun events sponsored by HCO.

He is quite religious and was raised in the Catholic Church. He has a photo he took out the window of the plane on his way to Boston. It shows God the Father, he says, walking on the clouds, hand upraised in a friendly wave.

Duane says that he will be retiring from ORC next year, and he is looking forward to having more free time.

Iverson Court recently celebrated its 35th year in the Winona Community.