Terrell Baumler wants to live on his own, have a pretty girl and a blue Chevy truck. He loves the Chicago Bears and the Chicago Bulls. He has all their socks, shirts and shorts.
“I got a four rec draft, Justin Fields of Ohio,” he said, before the NFL season kicked off.
Terrell has come a long way in a relatively short amount of time.
When he was 22 months old, he was diagnosed with medulloblastoma, an aggressive form of brain cancer. The tumors were removed, and after chemotherapy and radiation, he was in remission. Things went back to normal.
But when he was 5, the cancer came back, this time as T-cell lymphoblastic leukemia (T-ALL). For the next year, Terrell was in and out of the hospital.
First, another round of chemotherapy, then a bone marrow transplant. He was on a ventilator, suffered renal failure, underwent dialysis and had paralysis in half his body, though he eventually recovered.
“He had to relearn his name, eat, walk, talk. That was a road of hell,” said Terrell’s mother, Jan Baumler. “When we airlifted him out the last time a year later, I told him goodbye, right? Like I was done.”
For each cancer, he had a less than a 15 percent chance of survival. But a few months later, he walked out of the hospital. He fought cancer a third time, but this round was less severe.
“I mean, for 20 years it was just our life,” said Jan. “He just never gives up.”
Now at 22 years old, Terrell still hasn’t given up. He lives with four other people in a home provided through Systems Unlimited Inc., a local nonprofit organization that works to promote “dignity and growth for people with disabilities and mental health needs,” as its site explains.
“I like a lot of people [at Systems],” Terrell said.
Systems Unlimited is celebrating their 50th anniversary this year. The nonprofit was founded in 1971 when a group of parents wanted an alternative to state institutions, a way for their children to remain in their communities and be independent. By a vote of one, the Johnson County Board of Supervisors approved the first location in Iowa City. Systems currently serves around 400 people in the community and their families.
In the original parent model, one staff member lived with around six children, a small number when compared to the state institution, and other staff would come in to assist. But over the years, the model evolved — reducing the number of people per home, expanding the service to mental health and assisting adults as well as children. Staff service is tailored to individual needs. Some need 24-hour care, while others only need support once or twice a week.
Sam Bunkers, a supported living coordinator, helps oversee several supported living sites. He makes sure that homes have everything they need, sometimes even stocking up on snacks for site workers. And he works with individuals on annual goals they hope to accomplish. Prior to his current role, he worked as a site supervisor for three people with autism.
“It was honestly a great experience. Those three guys were, majority of the time, just happy-go-lucky,” he said.
“One of my favorite stories is one of the guys, while I was working on something down in their basements, he came down, kind of half smiling, just either checking out what I was doing or just looking at what’s going on and, you know, in a playful voice I said, ‘I’m gonna getcha, I’m gonna getcha.’ And I kind of chased him up the stairs, and he was just giggling madly and had a great time with it.”
Terrell gets along well with staff members. He likes the ones that joke around with him.
“They sit and talk with him about the football and the players and things. And then they agitate him. ‘The Bears are going down,’ and things just to rile him up,” Jan said. “They’ve taken him in this like a brother.”
The daily interaction with staff and others has helped improve his cognition. At his annual neurology appointment at the University of Minnesota, his speech and expression showed the greatest improvement.
“’It’s very tough to listen,’ you know, ‘Mom. Mom, it’s very tough not to eat healthy.’ It’s ‘very,’ that word. ‘Very, very cold.’ And things like that. That’s him expressing himself,” said Jan, imitating his voice. “I could hear it, so I know staff was talking to him.”
Systems also provides an employment program, helping people they serve to find paid jobs either out in the community or with Systems. They also help with self-expression through art programs, volunteering and planning trips. Recently, they developed a Unified Special Olympics team. In 2019, the team competed in a state tournament in Ames.
“We’re always looking for coaches, volunteers, people like that, and to come out and have fun with them,” Bunkers said.
The end goal of these programs is to help people with disabilities regain autonomy over their lives and become active members of the community.
“We still have that philosophy though of really helping people become as independent as possible, and really trying to find out what it is that they want to do with their lives,” said Jolene Sorenson, director of development and communications at Systems Unlimited.
“I would say for me, that’s kind of one of the best feelings to have — to know that we’ve prevented somebody from having an institutionalized life.”
Terrell has a job, too. He works at The Depot Express stocking items seasonally, and then he works at Systems with cleaning. He’s mostly independent. On his off days when his memory isn’t as functional, he needs some assistance and reminders.
Systems provides behavioral, mental health and clinical health services when people need them. This is especially helpful for those who have immediate behavioral crises, or long-term concerns like depression and anxiety.
Bunkers worked in a high-behavioral household, a task that while rewarding, could also be intense and exhausting. He moved to Iowa City to finish school, and in 2016, he started working at Systems while looking for a “more adult job.” After five years, he’s found it.
“What made me stay is the people that we serve, the people that we work with, they deserve to be in the general population,” he said. “It’s important to have people there who are knowledgeable and support that person and help make sure that they’re safe, and also to ensure that other people feel safe too, just the general community members.”
Life at Systems became complicated when the pandemic began early last year. Many people with disabilities are at higher risk for hospitalization, long-term health repercussions and death due to COVID-19. But for increased safety measures, isolation was the trade-off.
“There was a lot of people that made masks for us, and donated that or sick cards and letters to the people we serve, you know, just to help with that isolation,” Sorenson said. “Our community wrapped around us.”
Just as restrictions began to relax, the Delta variant caused more precautionary measures. Systems Unlimited cancelled their 50th anniversary picnic and celebration in Mercer Park last month. They are going forward with their annual awards ceremony on Sept. 10, but only award winners are invited to more easily maintain social distancing.
“It’s just unfortunate that COVID is around, and it makes it a little harder for us to really celebrate,” Sorenson said. “But we’re really happy that we’ve been able to be part of the Eastern Iowa Community for 50 years.”
Terrell and his housemates are keeping up with their hygiene, always wearing their masks. Even still, the pandemic has limited their independence.
“Staff have done really good with the COVID thing. ‘You know, Mom, I can’t go out because of COVID,’” said Jan. “They’ve cut back a little bit and it’s ‘Terrell, you know they only have your best interest.’ ‘I know, I know, that dumb virus. When’s it gonna go away?’”
Despite the setbacks, Terrell never wants to leave Systems. He celebrated his last two birthdays and Christmas in Iowa City, instead of traveling back home near Decorah, Iowa.
“He never wants to come home,” Jan said. “And is it hard? Yeah. But I’m happy that he’s happy.”