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Stories of Children and Youth


Severely autistic find hope, home

Hannah Rose sits quietly on a small exercise ball in front of a computer. Her attention wanders, and she can't speak, but the classroom aide at her side keeps patiently directing her toward an adaptive reading program on the computer screen.

In addition to being severely autistic, Hannah, 12, has other cognitive disabilities that limit her mental functioning to that of a 2-year-old. But as part of a new program for severely autistic kids at the Oconomowoc Developmental Training Center, a residential and day school in Waukesha County, Hannah has progressed from operating at the level of a 7-month-old, according to her mother, and her aggressive outbursts have decreased.

Located in what was once the summer estate of the Pabst family, of Pabst Brewing Co. fame, the Oconomowoc Developmental Training Center quietly has built a reputation for teaching kids with behavioral problems and mental disabilities that schools and families were no longer equipped to serve.

But in addition to serving dozens of other residential students and more independent learners who come in for day school, the Oconomowoc Developmental Training Center created the Innovative Care for Autism and Related Disorders, or ICARE, program two years ago. Students in the program receive intense, one-on-one attention that focuses on building relationships and using play to promote interaction with adults.

Autism-spectrum disorders are still not understood fully, but those diagnosed with spectrum disabilities struggle to relate with others. While some autistic children and adults are considered "high functioning," others, such as Hannah, lack the ability to communicate orally and can be prone to aggression.

According to Mike Purpura, community relations director, staff members at the center realized about five years ago that they needed to develop a better way to serve the increasing number of kids with autism. The ICARE unit has 23 students with severe autism, mainly from Wisconsin and Illinois. Some live full time on the premises, while others go home each day to their families.

Kara Stevenson, the director of residential services at ICARE, said they see their goal as helping autistic kids gain as many developmental skills as possible. While some methods suggest that kids with severe autism need to be given specific skills to do over and over until they master each one, Stevenson disagrees. Instead, her staff has adopted the philosophy of clinical psychiatrist Stanley Greenspan, who advocates treating autistic kids through individualized, developmental and relationship-based therapy. "As common sense as (building relationships with kids) sounds, it's actually fairly innovative when it comes to autism," Stevenson said.

Linda Rose, Hannah's mother and a foster parent in Winnebago County, said that when they made the difficult decision to put Hannah in Oconomowoc, the young girl was biting, pulling hair, and kicking and screaming in public and at home. "We couldn't function in our community anymore," Rose said.

Now, she said, Hannah's "meltdowns" have decreased from about 900 tantrums per month to fewer than 500. She can interact with an adult for short periods of time, and she's made more gains since her learning environment allows her to get up and walk, run around or play on the swings when she's feeling caged in and stressed.

When they're not in school during the day, the girls and boys in ICARE are supervised in recreation areas inside or outdoors, where staff members continue to work with them through games and other play therapy.

The students in the ICARE program make up about a quarter of the 105 residential students at the Oconomowoc Developmental Training Center. The traditional day school program at the center, Genesee Lake School, serves residential kids as well as ones who come in for the day. Children in Genesee Lake School usually are higher functioning, but are still saddled with other cognitive or social disabilities.

Walking the hallway on a typical day, you may see small groups of kids in classrooms working on reading, while students in other rooms who lack the ability to speak may use special electronic tablets to communicate with teachers. Some kids walking down the hallway with staff members may be wearing helmets to keep from injuring themselves. Others are gregarious and wave whole-heartedly to visitors. "What connects all of our kids here is some kind of developmental disability," Purpura said. "They usually have lower IQs and may have mental health problems, which can make them difficult to manage."

A program of last resort
Though the center's mission is to help every youth develop the skills to lead an independent life, its programs are considered a last resort as far as parents and social services are concerned. Children have to be court-ordered to attend the center, proving that all other avenues have been exhausted, such as special education at school, tutoring, in-home services and counseling. Though the state and schools pick up the majority of the cost of attending such a program, average fees for a child in ICARE total $416 per day, while the children who are in the center's other programs cost about $326 per day to educate.

Running the facility requires round-the-clock shifts of 300 employees. Staff members work hard to have the center not feel like an institution. First, it's situated among acres of pristine woods on what was once the Pabst family's summer retreat. The main house, an ornate mansion built in 1928 by Gustav Pabst, houses the admissions office, library, and some student and staff workspace. Staff training takes place in the "solarium," a glass-walled, airy room with long tables and a movie screen for training videos. Other buildings include what look like normal classrooms on the inside for day school students. Student dormitory areas are sparsely furnished, but colorful and inviting. The property also includes several group homes for the older teenagers and young adults.

Purpura hopes that if the center expands in the next decade, new efforts will include group homes that could provide a continuation of individualized attention for the children whom they've brought through adolescence and their teenage years. "It's sort of a black hole out there in most states for some of these kids when they turn 18," Purpura said.

Erin Richards
21 February 2009

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