Why Jacob Won't Talk
"Jacob would like to serve drinks." Like the perfect butler, her son delivers cups of soda to his guests. And all the while, he never says a word.
In fact, Jacob doesn't talk at all—except to close family and a couple of friends. Many children are shy around strangers, of course, but Jacob's reticence is different. He suffers from a rare childhood disorder called selective mutism that renders him so anxious in the company of others that he cannot, despite all his efforts, utter a single word. It's as if a light switch has been flipped: One minute he's a sweet-natured chatterbox telling knock-knock jokes and reciting presidential trivia; the next minute—say, when a neighbor appears at the door of his family's home—he's silent and remote. Jacob has yet to speak to most of his relatives. He's a top student in first grade, but his teachers have never heard his voice. Not even the direst bathroom emergency incites him to speak—he'll merely gesture and grimace. One Halloween, he couldn't manage a single "Trick or treat," despite all his father's cajoling. "I said, 'Come on, please, just say it for Daddy,'" remembers John, 37, a network engineer. "I feel so sorry for him, because it's a prison."
About 7 in every 1,000 American children suffer from selective mutism, according to the American Academy of Child and Adolescent Psychiatry. Left untreated, some grow up depressed and reclusive. (Seung-Hui Cho, the shooter in the Virginia Tech tragedy, had the disorder.) When Jacob does talk freely, he paints a vivid picture of his anguish. "He said, 'When I try to speak, my bones feel like glass,'" recalls Donna, 37, a stay-at-home mother. "'My skin feels like paper, and my lips are glued shut.'"
At first his parents thought the oldest of their four boys was simply the shiest. Jacob uttered his first word—it was "cup"—at about a year old, right on schedule. He could recite the alphabet at 2, and by age 4 he was reading aloud from Dr. Seuss's Fox in Socks. But that was in the safety of the family's four-bedroom house. As the boy's world expanded, red flags appeared. Preschool teachers noted his silence but didn't press the Hannas on it. When he was 4, "they started telling me things like, 'We don't know if he knows his ABCs,'" Donna says. "I was like, 'Are you kidding? He's reading—I mean, really reading.'"
Relatives were concerned too. Jacob felt comfortable enough to speak to his grandmothers, who babysat him regularly, but was mute with his grandfathers, aunts and uncles. It didn't occur to the Hannas to take Jacob to a doctor. Instead they tried old-fashioned reward and punishment. Jacob loved to eat McDonald's after preschool, so Donna imposed a condition: At the start and end of the day he had to say "Hi" and "Bye" to his teachers. It was no use. "He'd wave at them," she recalls, "then look at me like, 'Is that good enough?'"
After two Mac-less months Donna rescinded the rule. But she was determined to get to the bottom of Jacob's peculiarity, spending long nights combing the Internet. In March 2006 she found a site describing a condition whose symptoms were all too familiar: selective mutism. Jacob's doctor referred them to a local mental health clinic, which confirmed that diagnosis in the summer of 2006. Donna was relieved. "Now we could finally figure out a treatment plan," she says.
But first they had to find a specialist; more Web searches and calls led the Hannas to Dr. Elisa Shipon-Blum, whose Jenkintown, Pa., practice—devoted entirely to SM—is a four-hour drive from Fredericksburg (and whose $300-per-visit fee isn't covered by insurance). A onetime family practitioner, Shipon-Blum has an interest in the disorder that is personal: Her own daughter began showing symptoms of selective mutism in preschool. "I was so frustrated at being told she had autism or retardation," she says. "I made it my mission to find answers."
It was uncharted territory. Through trial and error, Shipon-Blum developed a treatment program that has helped at least 1,000 children—including her daughter, who at her recent Bat Mitzvah read the Torah to a packed house. For Jacob, Shipon-Blum prescribed a small daily dose of Prozac (1.25 mg versus 10 mg for an adult) to ease anxiety, and launched an incremental plan to expand his circumscribed world. "His parents came in with the idea that it's all about speaking," she says. "I was like, 'Wait a minute, he's not even engaging anybody.'"
She tasked the Hannas with getting Jacob to interact with adults by handing a debit card to the grocery clerk or pointing to the menu when a waitress asks what he'd like. Next, Shipon-Blum, known to patients as Dr. E., trained him to make simple sounds for each letter of the alphabet—exhaling to produce an h or pushing air through his teeth for an s. With each sound, Jacob rated his response on the doctor's "scary scale," from 0 (no fear) to 3 (high anxiety); if stressed off the charts, he'd write "10."
Determined to talk to his friends, Jacob willingly continued treatment. Once he mastered a phonetic alphabet, Shipon-Blum devised "the sound game," a question-and-answer exercise to help him vocalize in front of others: Asked if he likes SpongeBob in one recent session, he hisses an "ssss" to indicate yes; as for eating chocolate-covered bugs, it's "nnnn" for no. After six months with Dr. E., Jacob, when prompted, began sounding out full sentences for her in a soft voice—not at all like the way he babbles to his parents, but a major step nonetheless. Next, Shipon-Blum eased Jacob into playing the sound game three times weekly at Courtland Elementary School—but only in a "safe place" of Jacob's choosing. These days he can play the game with two or three of his good buddies. "You can't get a kid verbal until you have social comfort," Shipon-Blum explains, "and Jacob is more comfortable in a small group."
These tactics have worked with hundreds of other children, says Shipon-Blum—like Laura Huggins of Midlothian, Va., who at one point couldn't speak to her own father. As with Jacob, Shipon-Blum taught her to string together simple sounds, and before long the night came when at bedtime Laura looked at her father and said, "ddd-aaa-ddd, I lll-uuu-vvv uuu." "It was like a magic key," says her mom, Patti. "I was a puddle." Adds Laura, 6, now a chatty kindergartner: "Sometimes I might be a little nervous, but it's okay. I like talking because now people know my feelings and stuff."
The Hannas long for the day Jacob communicates so well. "He doesn't have to be Mr. Charisma," Donna says. "I just want him to be comfortable in who he is and have meaningful relationships. It's sad, because I can see he's wanting that." For the moment, Jacob remains an enigma to most of his schoolmates. "He likes to be helpful," says Suzanne Wyatt, his first-grade teacher until last November. "If he can pass out papers, he seems elated, but other than body language, there's no communication." Still, Shipon-Blum remains confident. "He's doing great," she says. "He will absolutely overcome this."
Jacob made a breakthrough before the holidays when, after months of playdates, he finally spoke to his pal Tony. At Jacob's seventh-birthday party, the two boys wrestle in the family room before heading to the dinner table for pizza. When the last slice disappears, Donna leaves the room and returns with candles ablaze on her son's Spider-Man cake. A shy smile creeps across Jacob's face, and as the group belts out "Happy Birthday," he blows out the candles with a flourish—this from a boy who used to sob when he heard the song. "For so long I'd tense up during a moment like that, waiting for this horrible reaction," Donna says. "But he was so happy. Just the smallest steps like that are a huge deal for us."