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.