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New Program Aims To Help Caregivers Of Children With Autism

Chileda Says Better Training Could Prevent Regression

illustration of child's brain with puzzle pieces
Raquel Mela (CC)

A La Crosse facility that provides a home for children with autism is starting a new program to teach caregivers how to better care for them.

The goal of the new program is to eventually help transition the child back into their own home, a group home or to one day live independently.

Chileda of La Crosse is a school and home for people with autism and other behavioral challenges between the ages of 6 and 21. The center opened in 1973.

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Children with autism display a wide-range of cognitive and behavioral issues, Karrie Zielke, Chileda’s development and learning center director, explained.

“Some typical characteristics of a person with autism: They just see things differently. They interpret things different. They communicate different,” she said. “Maybe they need a little more time processing what you’re asking them to do. Maybe they don’t understand how to express their feelings, so that’s when they may act out. They may hit or throw something because they don’t have those communication skills.”

The Centers for Disease Control and Prevention estimates 1 in 59 children in the United States have autism.

“The students that come to us receive a very individualized program. It’s not, ‘Here’s a box everybody has to fit into this program.’ It’s what is best for that child. What are the goals that the parent wants for the child in order for them to be independent? What are the goals that we feel are necessary for this child to grow in our program?” she said.

Zielke said the average student lives at Chileda for more than two years. Most of the students at Chileda are from Wisconsin, Minnesota and Illinois, but Chileda attracts families dealing with autism from around the country.

While children with autism receive specialized care at Chileda, finding that same level of care when they transition out of the school is difficult, Zielke said, adding that parents are often unequipped to cope with their children’s behavior.

“When it comes time to transition home or time to transition to a group home, the parents don’t have that knowledge that we have when we’ve been working with that child for a couple of years,” Zielke said. “What we’ve found is sometimes those kids go home and they regress. They go back to displaying those behaviors that cause them to come to Chileda.”

With a grant from the Wisconsin Department of Children and Families, Chileda is starting a bi-weekly Relative Caregiver Support Group to give family members the tools they need with things like behavior modification or verbal de-escalation.

“What training can we provide that parent so that child can be successful? We don’t want the child to regress. We’ve worked very hard over those two years to get them to a good spot and we want to transfer that knowledge to the parents or the after-care place they’re going to,” Zielke said.

Sue Justman, of Minneapolis, has a son with autism currently living at Chileda and said caregiver education is needed.

“The idea of him coming home actually would terrify me at this point because I don’t have any of the skill sets, the things that they are doing at Chileda,” she said.

“He will probably transition to a group home, so it won’t be a case where he will be coming back to our house, but getting him out of Chileda, that’s our number one fear is that he will regress unless we’re able to take everything he has learned and apply it in his new living situation,” Justman said.

Doug Sullivan’s son has been in and out of Chileda, returning once with an after-care plan to the family’s home in Texas. With no support available in Texas, the family eventually moved to La Crosse to be closer to their son when he moved back to Chileda after struggling at their Texas home.

“It’s not just something that you do once and then it sticks,” he said. “With kids like these, you have to keep them in that structured environment.”

Zielke said the training to allow someone with autism to be more independent is individualized and often complicated.

“Just recently, we had a student transition to a group home, and we sent a couple of staff with them for four days and we had them train from 7 a.m. to 9 p.m. They were training the new staff on how to work with this child,” she said.

The support groups will begin this year.