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SCV parents of kids with disabilities share challenges

Local support group offers understanding for moms and dads without a ‘manual’

Posted: May 10, 2014 10:23 p.m.
Updated: May 10, 2014 10:22 p.m.

Christina, John and Jonathan Haselbusch sit for a portrait in Jonathan's bedroom at their home in Canyon Country.

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Michelle Zundell recalls the three anguishing years when her son slept on the floor every night.

At the time, her child was only 6 years old and suffered from severe separation anxiety. Medication hadn’t worked, and the only way Zundell could eventually ease him into sleeping in his own bed was to roll out a sleeping bag nightly and gradually creep it toward his bedroom.

At a monthly parental support group meeting, she recalled she suffered plenty of sleepless nights herself during that time.

“People were horrified when we told them our kid was on the floor, but you know, you just do what you have to do,” she said. “We’re all figuring it out as we go. There’s no instruction manual for caring for these kids.”

The support group, which meets at Real Life Church, is for parents of special-needs kids. Those who attend offer successes and tips, but also share guilt and stories of failure.

“It’s like we went through hell,” Zundell said.

Christina and John Haselbusch can relate. They lead the support group for parents with special needs kids called SKIP (Special Kids, Involved Parents). The group meets once a month to discuss the difficulties of raising a child with special needs.

Their 11-year-old son, Jonathan, had the same problem when he was younger. Following their divorce in 2009, Jonathan would stay with John on the weekends. Christina would have him during the week. John didn’t have issues for the first six months, but when Jonathan turned 6, things changed.

“He would be getting up, and I’d be army-crawling out of the room and his little head would pop up, and I’d look back (and say), ‘Everything’s cool,’” he said. “I don’t want to let him dictate what we do and let him be in control. I have to get up at 4:30 in the morning and work 16 hours.”

Christina didn’t suspect anything was wrong at the time they separated, but looking back, it was clearer.

“He’ll be hugging John, and he’ll come over and hug me, and he pulls us together, so he’s in the middle,” she said.

Jonathan could never say what he felt because he is non-verbal.

When he was 9 months old, he wasn’t sitting up. Christina and John were concerned. They met with a general practitioner who said boys just take longer to develop, but by 13 months, nothing had changed.

They called the Los Angeles Regional Center, which did an assessment on Jonathan and told his parent he needed services but center personnel could not provide a diagnosis.

A neurologist said Jonathan had cerebral palsy and hypotonia, a condition involving low muscle strength, but after a year the diagnosis was reversed. He had significant delays in both gross and fine motor skills development and cognitive issues, and by 14 months old he was receiving occupational, physical and speech therapy.

“We’re trying to get him to sound things out, but for whatever reason, if we’re trying to get him to sound out ‘f,’ he does a ‘b.’ I don’t know what’s going on inside,” Christina said. “He understands what I’m telling him, but he can’t communicate it back. I can give multiple task commands, and he’ll do it, maybe three tasks, and he can do it.”

Through his school Jonathan was identified as a symbolic learner. He learns more through symbols than he does by seeing letters and numbers. At school, his teachers use an iPad loaded with an app called Proloquo to build his communication skills.

“It’s an application that helps us identify what they want,” said Michelle Lopez, Jonathan’s “special day teacher” at Bridgeport Elementary School. “A screen will come up when you push that app, and it will say ‘I want’ or ‘I need.’ It’s designed for each individual.”

Jonathan’s app shows clickable photos of things he likes: his red bike, a fireman’s hat, a DVD of “Blue’s Clues,” the animated Nickelodeon TV show, and a wooden rolling chair he uses as a transition object.

Lopez said the object helps him follow through with a transition from one activity to another and provides him a sense of control.

“It was used with another student. The other student would be told, ‘Do you want the blue chair or the brown chair?’” Lopez said. “I believe with Jonathan, he just gravitates toward that because he heard that being offered as a choice to another student, and he expressed an interest in it.”

She has found giving kids with disabilities a choice empowers them and helps them feel a greater sense of control.

“Generally, they’re being motored around their day,” she said. “I don’t know if you could imagine someone doing that to you your whole day, but it can be pretty intrusive.”

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