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Scared speechless: Blaine boy's struggle with selective mutism

If a stranger would ask 5-year-old Emmett a question, he would remain silent, or if he felt brave enough, he would whisper the answer in his mom or dad's ear.

BLAINE, Minn. – The change in behavior was so gradual, it took time for Samantha and Darin Sandberg to notice their son stopped speaking in public, terrified to utter a word anywhere outside their home.

If a stranger would ask 5-year-old Emmett a question, he would remain silent, or if he felt brave enough, he would whisper the answer in his mom or dad’s ear.

Emmett had shown some signs of anxiety, but the Sandbergs didn’t have any clarity on the fears paralyzing their son, until a kindergarten evaluation.

“Two evaluators came from the school district and at that time one of them suggested he might have selective mutism and it was the first time, I’d ever even heard of it,” said Samantha Sandberg.

Selective mutism is a rare but severe childhood anxiety disorder. According to the Child Mind Institute, "children with selective mutism are talkative at home but unable to speak in school or other public places because they are paralyzed with anxiety."

“It’s not a choice. It’s a debilitating anxiety, he is afraid to talk, it is social anxiety or in a social situation, he just can’t talk. It’s a real fear of having people hear his voice. He will go kicking and screaming and do everything he can to avoid having to talk in front of other people other than his immediate family,” his parents said.

Emmett is rambunctious in his home, often runs and jumps and plays and can be a chatterbox with his siblings, but once out in public, he freezes. If he’s forced to speak around a stranger, he will often put his hands over his mouth to hide the fact he is talking, or he will try to speak with his mouth closed.

His twin sister, Ellie, is in contrast, outgoing and extroverted and often speaks for her brother, which Samantha Sandberg views as another coping mechanism for her son. They encourage their daughter to withhold speaking for Emmett.

He’s made some progress through therapy and anxiety medication after seeing St. Paul-based child psychologist Sarah Pavek, who is the only therapist in Minnesota who specializes in selective mutism. Pavek sees children from around the state and region, and even has families driving up from Iowa because specialists in selective mutism are scarce.

“It’s a coping strategy gone haywire, then it becomes habitual,” said Pavek, who says selective mutism is misdiagnosed or underdiagnosed.

Selective mutism is caused by genetics and environment, but is often confused for autism, ADHD, defiance, or shyness.

“Because these kids are quiet, kind and academically progressing, and are not a problem in the classroom. Most of the time the parents don’t know the kids don’t talk at school until a conference in kindergarten or first grade,” said Pavek. “It would be so helpful for schools to be aware and communicate with parents, and if doctors could be more educated about it too.”

Children with selective mutism do not grow out of the disorder, but can only develop coping skills to combat it, which is why the Sandbergs are considering treatment at the Child Mind Institute in New York to help Emmett meet more milestones. They also held him back from kindergarten one year to give him more time to build coping skills before he enters a classroom.

“I really want to help other families because it’s been such a struggle for us, there is something out there,” said Samantha Sandberg.

Their family hopes to shatter the silence of selective mutism and to offer hope to other families whose children are also at a loss for words.

Selective mutism is most diagnosed in children under age 5, with girls being twice as likely as boys to present symptoms, occurring in an estimated 7 in 1,000 children, an incidence rate more common than autism, according to The Journal of the American Academy of Child and Adolescent Psychiatry.

October is Selective Mutism Awareness Month.

Read more about a Duluth mother’s experience with her son’s selective mutism here.

Families seeking help with selective mutism can contact child psychologist Sarah Pavek, M.A., L.P. here.

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