House of Hope
Reprinted with permission. April 2004
By Gayda Hollnagel Of the Tribune staff

Ten-year-old Ben Marg used to get so frustrated he'd bang his head on a window. He used to smash every drinking glass he could get his hands on. He also took eggs from the refrigerator and dropped them, just to see them shatter.

The episodes of destructive behavior were challenging, but Ben's parents, Gregg and Sue Steck Marg of Mankato, Minn., who learned that Ben was autistic when he was about 3, said they thought they were handling things pretty well.

Then, when Ben was in third grade, his behavioral issues became so severe his public school could no longer cope.

"It got to the point where he couldn't be on the playground when other children were there and he couldn't be in the classroom with other children," Sue said. Being isolated only added to Ben's problems.

He wouldn't go to sleep alone at night. "He broke windows; one time he put his head through the window," Gregg said.

The situation was so serious, Ben had to be hospitalized in a pediatric psychiatric ward for two weeks last April.

Finally, the couple decided it was time to seek an alternative for Ben. That's when he was enrolled at Chileda, a La Crosse residential education and treatment center that specializes in caring for children and young adults with autism and other developmental disabilities.

Autism covers many disorders that can include passive or aggressive behavior and self-injury. Some people with autism have difficulty expressing needs, repeat words or phrases in place of normal responsive language, have no real fear of danger and can be unresponsive to normal teaching methods.

Ben has sensory problems, his mother said. "A lot of times people with autism see things differently. They hear things differently. They feel things differently. Ben was so frustrated, the school district didn't know what to do with him."

Ben moved into Chileda in July 2003, and although he still has his problems, he's much happier, his parents said.

"Here, it's like he's part of the group. He has friends here in his own way," Sue said.

The Margs, who both teach in the biology department at Mankato State University, try to visit Ben at least every other weekend. They also take him home frequently so they can spend time together as a family.

"He's happy to come home and he's happy to go back," Sue said.

Both Margs said they struggled with the idea of leaving Ben at Chileda and would not have been able to do it if Ben had resisted. However, they said, Ben seems to have adjusted very quickly.

"Sometimes (when he's home for a visit) he just goes and sits in the car, like it's time to go back," Sue said. "This really is his place. I don't know what I'd do if they didn't have Chileda here."

Chileda, founded in 1973, has been a source of help for thousands of families during its 31-year history said Don Heidel, president and founder.

The organization is licensed to serve 43 residential clients ages 6 to 18 and has stayed at full capacity since 1978, Heidel said. The center also offers a day program for eight children from outlying school districts and operates a summer program that serves about 30 students each year.

Currently, the age range for residents is 7 to 22, Heidel said, with older young adults allowed to stay on while they complete job training that will help them transition into semi-independent living.

"Our guys (clients) lose control often enough that the traditional workshop is unable to handle them," he said.

The key to Chileda's success is its high ratio of staff to students and programming that is especially tailored to meet the needs of each child, Heidel said. Chileda has a staff of 217 people, including administrators, educators and caregivers, that provide 24-hour a day care and supervision, seven days a week.

A major requirement for employment is that the person love children and enjoy working with them, Heidel said.

Structure is critical in the care and treatment of children with autism, he said, adding that the earlier treatment starts the more successful it is.

"In the process of trying everything else, sometimes these guys are 14 or 15," Heidel said. "It would be wonderful if someday the average age at Chileda was 8."

Chileda has an annual budget of about $6 million, with revenue coming from numerous sources including states, counties and school systems that have children enrolled at Chileda.

Because of its specialized services, the residential students come from all over the United States, Heidel said.

The center has a national reputation and recently was awarded the highest accreditation possible by the Council on Quality and Leadership, an independent evaluation and consultation body specializing in assessments of agencies providing services to individuals with developmental disabilities.

The process for accreditation goes beyond what is required for licensing and regulatory surveys. The assessment for accreditation considers leadership, systems planning, quality management and outcomes for students, Heidel said.

The three-year accreditation comes after 10 years of maintaining a two-year accreditation, Heidel said. He said the three-year accreditation is reached by no more than 10 percent of accredited agencies.

The Chileda staff is proud of its accomplishment, but more proud of what their good work means for the lives of the children they serve, he said.

Heidel said Chileda is committed to providing students with the help they need to attain the best quality of life possible now and in their futures.

The Margs are counting on that commitment to secure Ben's future.

"Our goal for him is to be able to live semi-independently, have a job and live a fulfilled life," Sue said. "And Chileda is our best hope for that."