When Jenny Foster picked up her older daughter from preschool one day in fall 2010, the teacher approached her with an odd question. “She asked, ‘Does Lily know how to talk?'” recalls Jenny, 34. After three months in the classroom, Lily, then 4, hadn’t spoken a word to her peers or her teacher. Jenny and her husband, Drew, 35, were shocked.
“At home, Lily was a chatterbox,” says Jenny, now a preschool teacher herself. “She was always talking to her younger sister, Ella, and playing dress-up. She acted like a normal kid.”
When Jenny asked Lily why she hadn’t spoken in school, Lily just shrugged. But Jenny began noticing a pattern: Despite her bubbly personality, Lily was silent everywhere they went, from the grocery store to the pediatrician’s office. Jenny realized Lily had been that way for as long as she could remember. Concerned, she turned to the Internet. Her frantic searching turned up a rare anxiety disorder called selective mutism (SM), in which children often speak fluently at home but stay silent in other settings like school and friends’ houses. The disorder affects an estimated 1% or more of the population and is often mistaken for a better-known problem such as autism, oppositional behavior or intellectual disability (low IQ) — or, as in Lily’s case, plain old shyness. When Jenny asked her family physician about SM, the doctor said she’d never heard of it; nevertheless, she promised Jenny that Lily would outgrow the behavior.
Reassured, Jenny and Drew, a zoo curator, tried to coax Lily into talking, offering small toys as rewards. It didn’t work. Instead, Lily’s silence became more noticeable and troubling. Lily would read aloud in school only if she was alone with the teacher, and even then her voice was a whisper. On playdates, she growled and squeaked to communicate. “As she got older, other girls looked at her and turned away,” says Jenny. “My heart broke for her.”
Soon Lily’s physical health was in jeopardy, too. In first grade, she fell from playground equipment and hit her head. “The teacher asked what had happened, but Lily never responded,” Jenny says. Then, last year, when Lily was in third grade, a classmate began biting her on the arm. Although in pain, Lily did nothing.
Jenny knew she could no longer wait for Lily to change; she had to take action. Gaining confidence that Lily did indeed have SM, she called more than 20 doctors, social workers and therapists near the family’s Phoenix home. Most hadn’t heard of the condition.
Undeterred, Jenny made her search for help broader. Her Googling led her to the Child Mind Institute (CMI), a nonprofit mental health practice for childhood psychiatric and learning disorders in New York City. When she called, she found Rachel Busman, Psy.D., a clinical psychologist who not only knew of SM, but was the director of CMI’s Selective Mutism Service. “It was a huge relief,” Jenny says. “That was the first time we felt there was hope.”
And it couldn’t have come soon enough. Generally, the older a child is at diagnosis with SM, the harder it is for her to get better. (Most children are diagnosed between ages 3 and 7; SM is slightly more common in girls than in boys.) When left untreated, kids with SM may worsen and develop other disorders such as depression and social phobia.
A few weeks after the initial phone call, Jenny, Drew and Lily flew to NYC for five day-long sessions of intensive behavioral treatment at CMI. After lots of warm-up time, Busman used skills like asking “forced choice” questions to get Lily to open up. Busman would say, “Lily, would you like the yellow crayon or the blue crayon?” — and to her parents’ astonishment, Lily would respond.
Lily did so well during her first few sessions at CMI that Busman soon told her to order lunch at a restaurant. Minutes later, Jenny, Drew and Lily were sitting in a crowded café. After practicing alone with her parents, Lily, in a very quiet voice, asked a waiter for mac ‘n’ cheese, oranges and chocolate milk. “I had tears in my eyes,” says Jenny. “It was a victory.”
Once the family was back home, Lily shared that she had always wanted to talk in public, but had felt as if there were superglue on her mouth. Since then, Jenny and Drew have been determined to get the glue off for good. Their efforts — including a return visit to CMI this past February for a weeklong group-based program called Brave Buddies — have paid off: Though not fully cured, Lily has made major progress. She speaks often at school, and she sang and danced in her school’s musical last winter. In the spring, she had a speaking role in a Girl Scout ceremony. “We couldn’t have imagined that a year ago,” says Jenny. “She’s found her brave voice.”