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BEHIND A WALL OF SILENCE

Jackie Marino remembers her daughter Grace counting the

days until her first day of first grade.

"I have a picture of her. She was about to get on the bus, and she was

beaming. She couldn't wait to go to school," says Marino, a veterinarian from

Fort Salonga. "I frequently look at that picture and say she went to school

that day and she came back a different kid."

At home, Grace was outgoing, funny and bossy to her little sisters. It was

just the opposite at school: She was withdrawn, her face a blank stare. She

didn't utter a word to anyone. "It was almost like two different people,"

Marino says.

Initially, Marino says, she thought her daughter was suffering from shyness

and she'd eventually outgrow it. Then she went with Grace to school and sat in

her classroom, hoping it would put her at ease. "She wouldn't even speak to me

inside the school building," Marino says, "and she had this look of terror on

her face."

A school psychologist suggested Grace might have a social anxiety disorder

called selective mutism, a little-known, oft-misdiagnosed condition that

experts believe causes children to be able to talk in some settings and unable

to in others. "I started reading about it, and it fit her to a T," Marino says.

Children who have selective mutism, or SM, have the ability to speak and

communicate at home and in other situations where they feel safe and

comfortable. Their anxiety kicks in most often at school and in other places

where they feel they're expected to talk and interact with others. Some freeze

up, their bodies stiffen, their faces go blank, and they avoid eye contact.

While the cause is unclear, experts say many children and teens with SM

have a genetic predisposition to the disorder, and some also may have other

underlying problems, such as speech and language deficiencies, subtle learning

disabilities or difficulty processing information.

"This is a disorder like ADHD [attention deficit hyperactivity disorder]

and autism was 20 years ago," says Dr. Elisa Shipon-Blum, president and

director of the Selective Mutism Anxiety Research and Treatment Center in

Jenkinton, Pa., and the mother of a child who had SM.

Shipon-Blum and other experts who work with children with selective mutism

say the disorder is more common than autism - one study says 7.1 in 1,000

children have it - but many parents, educators and physicians are only

beginning to learn about it.

Get educated

Because of that, Shipon-Blum urges parents to educate themselves about SM

before going to their family physicians. "So few doctors and therapists

understand this, so get your information first," she says.

Marino says she took Grace to several doctors. One was stumped, she says,

but indicated she might be responsible for her daughter's condition. Another

said selective mutism was "B.S.," and a third said she would outgrow it.

After Grace's first-grade year, Marino attended a conference and learned

about Marian B. Moldan, a clinical social worker who had had selective mutism

as a child and for the past 20 years has been treating children with the

disorder.

Moldan, who lives in Miller Place and has an office there and in Syosset,

says having SM "was like the fear of standing on the edge of a diving board and

that moment where you're not sure if you're going to jump off or not jump off,

and being stuck in that limbo forever."

"The children want to speak," she says, "but it's that incredible torturous

limbo, and it's awful."

Laurie Sciscente's son Jack was in nursery school when he was diagnosed

with SM at 3.

"At home he was funny and talkative. If friends he'd never met or the

mailman came to the house or a few family members, he would close down around

them. No eye contact," says Sciscente, a physical therapist.

"He didn't like going places," she added. "If strangers started talking to

him, he would just look at the floor. He started not being able to be verbal

with me at all. He had a fear of going to school. I had to pull him into the

car, kicking and screaming."

After being observed in the classroom and having his speech and hearing

tested, a special-education teacher and a social worker came to their Garden

City home to work with him.

Jack made progress gradually. When he started preschool at 4, he avoided

eye contact with his teachers, had rigid movements and very little facial

expression. As time went on, he began speaking to four or five classmates but

not to his teachers. Then he started talking to a few of his teachers, but only

out on the playground, not in the classroom.

Jack is in first grade now, and talks to every child in his class, his

mother says. "He's the mayor of the class," she says, chuckling. "He is not

verbal with his teacher, but he'll raise his hand and he'll nod his head. He

whisper-reads when he is in a group. He sings in music class."

One highlight of the school year was that Jack had two lines in a play. "He

said them loud and clear," Sciscente says. "It was really an amazing moment."

She urges parents to be supportive and patient with a process that can be

long and arduous.

While there are different approaches to treating SM, including the use of

medication, experts say the ultimate goal is to determine why a child becomes

selectively mute and then find ways to help lower the child's anxiety, build

their comfort level in social settings and move them from nonverbal to verbal

communication.

Left untreated, many children become less social and more isolated with

age. Shipon-Blum says some children will learn enough coping skills to get by

but others won't. "A percentage of them don't get over this at all," she says.

"It affects their self-confidence, their academics, and some [who have it as]

adults live a life of isolation."

Getting help

That thought concerns Patricia Smith of Harlem, who says her daughter

Kashondra was speaking in complete sentences at 8 or 9 months, but by age 2

stopped talking to everyone else but her.

Now in fourth grade, 9-year-old K.K., as she is called, has developed ways

of coping without speaking in school, her mother says. For instance, she will

mouth the words "yes" and "no" in response to her teacher's questions.

Smith says she doesn't want her daughter to lose out academically or

socially because teachers and others perceive her as being too shy, or worse,

defiant or stubborn.

K.K. used to make A's and B's, but she's now making B's and C's, her mother

says, because her teachers are "so caught up in her talking."

"It hasn't stunted her in learning as of yet, but as she gets older, she

could be left behind," she adds. "I just don't want her to miss out on

anything."

That's why last month she gathered with about 180 other parents, educators

and clinicians inside a hotel meeting room in Hauppauge for Shipon-Blum's

one-day SM conference - and also paid for a teacher from her daughter's school

to go.

Treating selective mutism requires a team approach involving the child's

parents, classroom teacher, and other school staff, such as a psychologist,

social worker or specialist in speech and language development, says Dolores

Binstock, a licensed speech pathologist with the Sachem school district and

chairwoman of the district's Committee on Preschool Special Education.

Binstock urges parents to contact their child's school district and request

an evaluation to examine the child's medical and social history, observe his

or her demeanor in the classroom and pinpoint whether he or she has any speech

and language deficiencies.

Different schools and districts offer different services, she notes, so

parents often may have to find outside help from a psychotherapist or physician

who is trained to work with children with SM.

"The goal is to reduce the level of linguistic demand so it isn't a

high-anxiety situation for them to produce a response," she says.

If you focus too much on trying to get them to speak, "it can backfire,"

she adds. "Given the right support and strategies, they can successfully

overcome it."

Jonathan Berent, a psychotherapist who lives in East Hampton and has a

practice in Great Neck, has been working with people with social anxiety

disorders since 1978. He says parents, not therapists, have the most important

role in helping their child overcome SM, which he calls "an addiction to the

avoidance of speaking."

Some strategies

"We know the child can speak. The child does not speak in specific

situations. That's a form of avoidance. In order to avoid, the person has to be

dependent. The child is dependent not only on the parents' doing the talking

but a lot of the thinking and problem-solving for the child. So it really

cripples the child's initiative."

Berent says he works with parents to find ways to help their children

control their anxiety and confront their fear.

"You do not want to pressure the child to speak. You don't want to reward

the child for speaking," he says. "You want to set up a matter-of-fact and

supportive system of expectations that will restructure the child's attitude

and mode of thinking. For instance, if they want the snack, they have to try to

ask for the snack. ... If you get them to try, you've accomplished 50 percent."

Shipon-Blum encourages parents to talk to their children about how they

feel. Since children with SM don't speak at school, they are prime targets for

bullying and may go all day without telling their teachers or others when they

need to go to the rest room or if they're sick or hurt.

Marino says Grace, who sat and stared and wouldn't participate verbally in

her first-grade class, gradually started participating, though not speaking, in

second grade. That same year, a teacher at Grace's school began coming to her

home to tutor her once a week after school, with the focus on her schoolwork,

not on her talking. The next year, that tutor became her third-grade teacher.

"Now she speaks to the teacher at her desk and whispers to everybody," says

Marino, who has involved her daughter in basketball, soccer, jujitsu and other

activities to boost her self-confidence.

"I want to do things to make her comfortable enough that she can speak to

anybody, anytime," Marino says. "And it's going to be in her time."

Need some advice?

E-mail your ideas for the Monday Advice pages to pat.burson@newsday.com.

RESOURCES

For more information on selective mutism, a sampling of resources:

Jonathan Berent, a psychotherapist, Berent Associates, 17 Maple Dr., Great

Neck, NY 11021; 800-248-2034 or 516-872-9383; www.socialanxiety.com. Co-author

of "Beyond Shyness: How to Conquer Social Anxieties"

Marian B. Moldan, a clinical social worker, Syosset Medical Arts Building,

Suite 202, 50 Underhill Blvd., Syosset, NY 11791 and 185 Miller Place Rd.,

Miller Place, NY 11764; 631-331-8759.

Dr. Elisa Shipon-Blum, president and director of Selective Mutism Anxiety

Research and Treatment Center (SMart Center), 505 Old York Rd., Jenkinton, Pa.

19046; 215-887-5748. www.selectivemut ismcenter. org. Author of books,

including "Understanding Katie," a storybook for children 3 to 12 with

selective mutism and/or social phobia, and "Easing School Jitters for the

Selectively Mute Child." Also founder of Selective Mutism Group - Childhood

Anxiety Network, www.selectivemutism.org Selective Mutism Foundation Inc.,

www.selectivemutismfounda tion.org - Pat Burson

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