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.

What happens when an individual living in a HCO home is dying? As you would expect, HCO honors the wishes of the individual and family. And, as you would also expect, the process is upsetting to all of the individuals who live in the home, and also to the staff who work there.

Last summer, Sue became ill. It soon became clear that she was not recovering. She was diagnosed with kidney failure and the doctor prescribed hospice care. Sue rebelled against the entire idea of any sort of treatment and did not want anything to do with hospice. She went through the classic stages of grief, denial being the first. However, when her disease began to be more debilitating, she became frustrated and angry, swore at staff and deliberately rammed them with her walker.

This was not the Sue that staff and her housemates were used to dealing with. Before she became ill, Sue had a real love of life, had a broad smile, was independent-minded, and loved socializing and going out in the community. Staff say that wherever they went, Sue would run into someone she knew. She never forgot a face or a name. She loved cats and the color pink, which she nearly always wore.

When Sue’s illness worsened and she was too weak to go out and see people and do the things she loved, she became terribly depressed, saying she hated her life. Finally, she had to accept that she was dying and entered the hospice program.

Most of the DSPs (Direct Support Professionals) that worked with Sue are between 18 and 21 years old. Most had never experienced a person they knew facing death, and had certainly not had experience with the personal care of the dying. A hospice social worker and nurse came to the house and met with staff to help them understand what to expect, and Sue’s care was the topic of conversation in staff meetings. Staff were also offered the opportunity to have two counseling sessions, which would be paid for by HCO. Staff members were also going through the stages of grief.

Sue wanted to be at home with people she knew and loved, which HCO accommodated. So, when she was confined to bed, it was in her familiar floor-to-ceiling pink bedroom with her favorite cat pictures adorning the walls, in the home she had been living in for over five years. She had been with HCO since 1994.

As much as staff were concentrating on Sue’s care, which was a 24-hour-a-day endeavor, the other individuals in the house also needed their care and support. Sue’s housemates were confused as to what to do and how to accept that Sue was dying, and they were losing a good friend. They also needed staff to pay attention to those needs. Senior staff were aware that satisfying these needs in a caring, professional manner was a lot to ask of young staffers, but that they were up to the task, even as the work took an emotional toll. Staff and the individuals in the home definitely bonded over the experience. Sue’s large family made the staff’s job easier, too, because they treated staff as treasured members of Sue’s world, and included them in memorial and burial plans.

Earlier in the year, HCO employee, Bretta Thomas, spoke before the Minnesota legislature about Sue’s illness and death. HCO and other providers asked the legislature restore funding cuts impacting the care of those they serve. Bretta wanted the legislators to know what DSPs are called upon to do. She wanted them to know that even though these young people could go elsewhere and get a job paying much more, they chose to be at HCO. They chose to care for Sue, to change her soiled clothing and bedding, to wash her, turning her every two hours so that she would not develop bed sores, and give her emotional support. Staff were also willing to take on the added work of accounting for Sue’s medication, which included many controlled substances that had to be administered sometimes as often as every hour.

After Sue passed away on October 12, 2018, surrounded by her immediate and HCO family, there was more work to be done. The remaining controlled substances had to be taken to the police department to be destroyed. Staff had to account for each pill. They also dealt with the funeral home and paid the final balance. HCO contacted the county and Social Security offices and filled out the paperwork. These extra jobs are not reimbursed.

However, the staff who cared for Sue knew that they were granting her final wishes. The woman they had enjoyed so much during her life received the same loving care in death, all part of the mission of HCO and its dedicated staff.

A hospice social worker who worked with Sue and HCO remarked after Sue’s death, “This is not easy work caring for a person at the end of life, and your staff have been doing that beautifully! Yet in addition, they are very articulate in their work, they are caring for one another and the other residents, who are all losing a good friend and infectious smile. Then they are managing a large, sad, and amazing family who are losing their sister. The responsibility on the staff in this home is huge and I am so impressed!! Kudos to HCO for having the finest people doing the most important work.”

Bryce and Brady Bosteter were born on Halloween of 1996, weighing only a little over two pounds each, after only 26 1/2 weeks in the womb. They spent the next three months in the NICU in La Crosse and came home in January with many medical issues yet to be addressed.

Once home, they were on constant monitors. As preemies, they had trouble with their suck-swallow-breathe sequence and sometimes had to be tube fed if they tired while feeding from the bottle and couldn’t get enough nutrition. As you can imagine, their care was a time and energy intensive undertaking.

Brady was diagnosed with Cerebral Palsy at the age of one. It affects him mainly from the waist down, and doctors told his mother, Denise Herber, that he would never walk. Doctors underestimated both Brady and his mother, however, and he now walks with a walker and also uses a wheelchair.

Accompanying Brady’s CP was spasticity in his lower extremities, causing severe muscle tightness. Denise, who says she is the kind of person who has to know all about a problem and then looks for a solution, read about a Dr. Park at Children’s Hospital in St. Louis who was relieving spasticity with a rhizotomy, a neurological surgery that selectively turns off the nerve roots causing the problem. Denise and her mother, Dawn Singer, drove Brady to St. Louis and stayed there for the surgery and care, while Denise’s husband cared for Bryce at home. The surgery was successful and allows Brady more mobility.

His twin brother, Bryce, was born with hydrocephalus and developed seizures. Doctors told Denise that he would never walk, talk, or see. His hydrocephalus had to be relieved with a shunt, and his seizures have been successfully treated with medication. According to Denise, once he started talking “he never stopped,” and he is very social. He wears thick glasses and is legally blind, but is able to see enough to lead a fairly active life, shooting baskets, and golfing with his parents at Westfield, where he has a membership and is a favorite of some of the older golfers.

Denise’s life was a cycle of caring for the twins at home, addressing their medical issues with myriad doctor appointments and therapies, as well as being an advocate for the boys. She was divorced in the twins’ first year and was fortunate to have her mother living nearby. Her job as the Senior Accounting Officer for the City of Goodview allowed her to make up hours on nights and weekends. Childcare was a perennial and vexing nightmare because so few child care providers were able to successfully care for the twins and their many challenges. Denise says she always thought she was so busy with the twins that she didn’t take time to enjoy them, a common thought among mothers of kids with all levels of abilities, but magnified in her situation. However, she describes the boys as being very affectionate and loving.

Help came when the boys were about three years old, when Brady was diagnosed with autism. Because of the boys’ many medical issues, Winona County Human Services assessed their needs on a quarterly basis. It was through the county that Denise became aware of the services offered through HCO. At first, HCO provided staff who could go to Denise’s house and watch the twins so Denise could do laundry or work one on one with a twin. Shortly thereafter, Brady began to receive respite care at HCO’s house on Broadway.

It was there that Denise and Brady met Sarah Haines, who worked on autism issues with Brady and fed Denise’s appetite to know everything she could find out about autism and the other problems her twins were facing. Denise also did research herself, needing to “know what it means” to have autism and what to do about it. She mentions, gratefully, the help she received in that regard from Mary Jansen and Denny Theede at HCO and from ARC Minnesota.

At about the same time, the twins entered preschool at Lincoln Elementary, and Bryce was able to go to Key Kids after school.

Denise remarried when the boys were four, and her husband, Dave, was willing to share responsibility for their care.

Brady spent three years in preschool and Bryce two years. They then went on to kindergarten and elementary school at Madison Elementary, where they were mainstreamed in music, art, and physical education. They continued on at the Middle School and then Winona Senior High, where they graduated. Denise expresses her appreciation for the Winona community and their acceptance of Brady and Bryce. “They were never picked on,” she says, and credits HCO for educating the entire community on the issue of disabilities.

At one point, Denise and her mother looked into a facility for Brady who was experiencing many behavioral problems. They toured a place in Red Wing, and both felt overwhelmed with the thought of the boys in such a place, and they never returned.

When Denise was no longer able to lift him out of his wheelchair, Brady, at age 17, moved to a residential home in La Crescent, where he stayed for three years. Denise hated having him so far away, so when there was an opening, he moved to an HCO home where he is really thriving.

Bryce also moved to an HCO home earlier this year.  Since the two homes get together frequently for dinner and activities, the boys see each other often. They like their independence, their housemates, and their activities. “It’s a joy to be with them,” says Denise, and they live only a matter of blocks away from their parents.

Brady, in addition to swimming, participates in adaptive bowling. He loves music, Keith Urban being a favorite. Denise says that is a great improvement over his affection as a child for Barney! (She even took the boys to a Barney concert!) He also likes to draw and watch movies. Denise says she is continually amazed that Brady is now so laid back, when “it took me three years to teach him how to use a fork, and he would be so frustrated with foods he didn’t like that he would throw his food.”

Bryce also swims, bowls, goes to movies, and has been involved in the HCO musical.  He has also been invited to sing the National Anthem at all sorts of events:  WSU Homecoming, Rollingstone Days, Special Olympics, and the WSU Holiday Basketball Tournament. He likes to help out with Brady, hang out with housemates, and is noticing girls.

Denise is an avid advocate for HCO and has had the opportunity to talk to legislators about the work that HCO does in supporting the disabled in the community. Her affection for HCO is many-fold, but she cites the fact that they are located in the community, near to families, are so well-managed, and are able to help families keep their loved ones close, while giving them the structure and services they need to lead healthy, happy lives.

It takes many hearts and hands to give Brady and Bryce a good life, and Denise credits HCO, as well as her mother and husband (her “sounding boards”) with giving the twins, and her, the help they need.

Brittany is a self-described good girl, but she jokes that sometimes she can be a little contrary. “Pisces is always feisty!” she laughs.

For the past year-and-a-half, she has lived in her one-bedroom apartment at Winhaven Court, with her rescue cat, Zoey. She and Zoey, who was mistreated before she was taken to the shelter and then adopted by Brittany, have a mutual admiration for each other. When Brittany comes home from work, she taps lightly on the door to her apartment and softly calls Zoey’s name. From the other side of the door, Zoey meows quietly at her, and Brittany opens the door to a happy cat. Brittany is glad that she is able to offer Zoey a loving and stable home and that Zoey is good company. Brittany likes cooking, and her favorite meal to prepare when staff come is ham and cheese crescent rolls that she makes from scratch, with BBQ dipping sauce. She also likes fresh and frozen veggies. On Tuesdays and Thursdays, she walks a mile route from her apartment to WSU and back.

Brittany grew up near Dakota with her mother, father, and younger brother. Her mom is a bus aide, and her dad is an over-the-road truck driver. When she lived at home, her dad would often take her on trips with him, so she has traveled all over the United States. She spends holidays with her parents and since she owns her own car, she can visit them any time. She takes good care of her car, which she says is due for an oil change and probably a new muffler soon. She also admits that she has had to pay a few tickets for alternate side parking violations. “I hate alternate side parking!” she says emphatically.

She graduated from Winona Senior High School. Her favorite subjects were math and history, and she would have liked to take advanced classes in those subjects. She still studies math in her spare time online at Khan Academy, working on algebra to keep her math skills fresh and keeping a detailed notebook of her progress. She is also an avid student of genealogy and enjoys studying the history of her maternal grandfather, Noel Ehlenfeldt’s, family. She was very close to him and still mourns his passing in May of 2005.

Brittany would love to go to college to study either math or history, but isn’t sure what she would like to do with either of those majors. She’s also interested in research, archeology, and accounting. She’d like to be a mechanic, too, or since she loves animals, perhaps a job working with them. She has so many interests it’s hard to choose.

She and her best friend, Chelsea, have been friends since middle school and have a great time together. Both Brittany and Chelsea are involved in Grassroots, and they have a blast taking a bus to the capitol to rally with HCO and meet legislators. Brittany also has plans to go bowling with friends very soon.

She has worked at ORC for seven years in the laundry area. She irons sheets and loads the machines, doing laundry for Saint Anne’s, Winona Health, Callista Court, WSU, Sauer Heath, Sport-n-Spine, and the Winona County Jail. She is very good at her job, but feels like she could use more of a challenge. The best part of the job at ORC is working with her friends. If she’s having a bad day at work, she says that two of her good friends always save the day: they can’t help but make her smile and forget her problems. She admits that her impatience can sometimes hold her back, but she works hard to keep her composure and be professional. She tries to set daily goals for herself at work. If she doesn’t make them, she lets it go and tries to do better the next day.

Brittany has a lot of interests that keep her occupied on her break at work and in her off time. She especially enjoys music and her tastes range from country, such as Patsy Cline, Hank Williams, and Kenny Rogers, to Whitney Houston, Prince, Michael Jackson, and Carrie Underwood. She always has her ear buds and phone with her, so music is always available. Some of her television favorites are Judge Judy, Jerry Springer, Fresh Prince of Bel Air, Dead Files, Ghostly Adventures, and Family Matters. She also likes to read.

Right now, Brittany says, she has to focus on trying to better herself and plan for her future. People can’t help but believe that she will accomplish a lot in her life, she is so full of energy and drive.