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Child gets range of tailored treatment, and family learns to adapt
FRIDAY, May 27 (HealthDay News) -- Julie Wismann knew her young daughter was troubled.
The girl had been diagnosed with epilepsy at age 1 and put on medication, said Wismann, 34, of Centennial, Colo. But then the youngster, Kara Reno, began losing her words.
"At first we thought it was a speech impediment of some sort," her mother said of Kara. "She went from saying 50 words to no words. She was basically becoming developmentally disabled with words. She wasn't accruing as many words as she should have at that point, and the words she did have weren't forming well. It took people who knew her to understand what she was saying."
There were other worrying signs of behavior. For extended periods, Wismann said, Kara would put her hand in front of her face and watch it move back and forth. She wouldn't interact with kids her age. She didn't play-act with her Barbie dolls, instead just holding them in front of her face and looking at them.
At age 2½, doctors diagnosed Kara with autism.
Wismann said she had a hard time accepting the diagnosis. "I was in denial for four years, maybe," she said. "It was extremely worrisome."
She took Kara to a behavioral therapist and a communication therapist. She tried homeopathic remedies. She even considered taking the girl to chelation therapy, which involves injecting a chemical into the body and has been rumored to help children with autism. "I was going to try chelation at one point, but then I heard some other kids with autism died because it wasn't performed correctly," she said.
The only thing she said she's found that helps her get through to Kara is music therapy. "She just engages more," Wismann said. "Instead of being in her own space, if you're more singsong-y when you're interacting with her, she seems to engage more and want to be interactive with you."
Now 10 years old, Kara is considered to be on the developmental level of an 18-month-old. "She's now kind of diagnosed on the more severe part of the spectrum," Wismann said, noting that her daughter has to use an adult stroller when out in public places. "The sensory overload of trying to walk herself through someplace like a store overwhelms her."
Kara is nonverbal and does not respond to sign language. She communicates by reaching her hand toward something she needs, but even that is just fleeting.
"Everybody who is in Kara's world has pretty much had to come in touch with their sixth sense, to intuitively figure out what she might need," Wismann said.
And Kara's condition has put a strain on the whole family, she added. Wismann said she's had to work hard to make sure Kara's younger brother, Harley, gets his share of attention. A year younger than Kara, Harley is a bright and healthy youngster, his mother said.
"He's had to learn how to adapt," Wismann said. "He's learned that if we go somewhere and Kara has a fall-out or a meltdown, he knows he has to drop whatever he's doing so we can leave." Harley's also learned to be more independent and to take care of himself if his parents have to rush Kara for treatment or give her more attention.
Kara now attends a special needs school that's using applied behavioral analysis as its teaching method for Kara. The aim of this type of therapy is to teach useful skills that build upon each other. Wismann said she is also considering trying another form of therapy, called relationship development intervention, which tries to gradually and systematically develop the tools and motivation for social interaction.
"After all these years, I think I've finally come to terms with who she is," Wismann said. "I guess I have accepted it. Before then, it was just push, push, push to try and find a way to stop her downward spiral."
"I'm still waiting for her to say 'momma,'" Wismann said. "She'll mouth the word maybe once every six months or so, but she never says it. It's hard to tell how much she comprehends, and how much she can give."
A companion article offers more on treating autism.
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