Simone's Story

Simone's Story

At some point in time, most children will try the "silent treatment" on others.

But, for 8-year-old Simone Schwartz, silence wasn't a means of showing disapproval or getting attention. It was simply something she couldn't help, until Phoenix Children's Hospital provided some answers.

Simone's mother, Terrie, noticed that from an early age her daughter was quiet around others. She assumed her daughter was shy. After all, Simone spoke comfortably with her immediate family and to the few young playmates who came to her home.

Terrie became concerned when Simone turned 4. At her new preschool, she would not speak at all, and kept her eyes downcast when anyone tried to coax her out of her silence. But on the way home, Simone would chatter endlessly in the car, as if to compensate for the hours of silence. If the family gave anyone else a ride in the car, Simone wouldn't say a word. On trips when Simone was overly talkative, the family would joke that they would have to "pick someone up" to quiet her. But, all the while, Terrie's apprehension was growing.

Then Terrie and her husband, Bill, noticed that Simone would speak easily to one set of grandparents, but not at all to the other set. She spoke to some playmates, but not others. It seemed Simone was choosing whom she spoke to, and they knew this wasn't normal. They took Simone for some special tests offered by a local school district. During the screening, one of the testers used the term "selective mutism" for Simone's condition. But, although the school had a label for Simone's silence, they knew little about treating the problem.

Many normal parental concerns were heightened by Simone's condition. What if Simone were ever separated from her parents in a store? What if Terrie got hurt when she was home alone with Simone?

"I knew she'd never be able to tell a stranger her name and address, and she wouldn't be able to speak to a 9-1-1 operator," she explains. It was clear Simone needed help, and Terrie turned to the Emily Anderson Family Learning Center at Phoenix Children's Hospital.

The Emily Center is a consumer library dedicated to answering questions about children's health. The center has a collection of more than 2,000 books, audio tapes and video tapes, but the greatest resource is the staff. Health specialists are available to do custom research on even the rarest illnesses. They review medical journals, databases and other resources in their quest to help callers and visitors. They also have helpful parenting information, and a registered nurse produces personalized health education materials for hospital patients and their families.

"I'm probably their biggest fan," said Terrie of the Emily Center. "With four children, I've called on the Center many times, and they always come through." So, she asked the Emily Center for everything they could find on selective mutism. Not only did they find materials for Terrie, but they even located a children's book called Cat's Got Your Tongue to help Simone understand her fear of speaking.

Though the exact cause is unknown, selective mutism is thought to be related to severe anxiety and social phobia. Primarily found in children, it is characterized by a persistent failure to speak in select settings even though the child has normal comprehension and speaking skills.

Based on her findings, Terrie sought the help of a child psychiatrist at Phoenix Children's Hospital. Armed with her research from the Emily Center, Terrie was prepared to explain the strange disorder to the psychiatrist. But, as she began, the psychiatrist nodded, noting he'd been involved in some of the research and was very familiar with the disorder.

"It was the biggest relief of my life to have someone who knew what it was," said Terrie. "For the first time, someone else was acknowledging that it was a real problem."

The psychiatrist told her that behavior modifications had been tried with limited success, and that treatment with an anti-anxiety medication offered the best results. He predicted that Simone would show dramatic improvement within three months of taking the medication - just in time for kindergarten.

For Simone, the results were as good as promised, and, after about two years, they were able to wean her off the medication. While Simone isn't overly outgoing, she now has no problem talking to people in virtually any setting.

"I think it's important for parents to know that intense shyness may be something more, and that there's help," said Terrie.

Most of all, she's happy that Simone no longer has to suffer in silence.

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