By REX W. HUPPKE — Chicago Tribune

CHICAGO — At about age 6, there was dissonance in Jae's life.

"I started to play with dolls and to do all these things that girls would do," Jae said. "But people would say, 'Why are you doing that? You're not supposed to do that.' And I thought, 'I'm just doing what I want to do.'"

Jae is anatomically a boy. But at the age when most children begin to differentiate between the sexes, the trappings of boyhood seemed undesirable. Jae, whose last name is being withheld at the request of his mother, was perplexed by these differences -as a boy with feminine characteristics, he assumed he must be gay.

Not so. With the help of a supportive family, Jae soon realized the truth: Jae's gender-identity is female, regardless of anatomy. Jae adopted the feminine pronoun "she" and is, in her heart and mind, a girl, now 12.

Jae is one of about 30 transgender or gender-nonconforming children from across the Midwest now receiving guidance and support from a pediatric gender-identity clinic launched by Lurie Children's Hospital, the first of its kind in the region and one of only a few such facilities in the country.

The clinic is headed up by pediatrician Robert Garofalo and works with children as young as 3, offering comprehensive care for the child and support for family members.

"What's hard for some people to wrap their head around is that this condition actually exists," said Garofalo, an associate professor of pediatrics and preventive medicine at Northwestern University Feinberg School of Medicine. "Many of these families, they really suffer from a sense of isolation. We try to foster healthy childhood development, allowing the children some freedom to decide who they may be," whether it's a gender consistent with their anatomical sex or not.

For years, Lurie Children's Hospital has provided clinical care for adolescent and young adult transgender women, focused mainly on HIV prevention. It became clear over time that there was a need for broader services, and programs specific to gender-nonconforming children began showing up in cities such as Boston and Los Angeles.

Garofalo said that last year, the journal Pediatrics published an article about the formation of the Gender Management Service Clinic at Boston Children's Hospital. That, he said, presented an opportunity for physicians at Lurie to expand on the work they were already doing and more formally help transgender children and adolescents.

"I bet in five years, many places will be doing work like this," Garofalo said of Lurie. "We hope what we're doing acts as a model for others."

Families who come to the new clinic will be able to access psychiatric and psychological services as well as Lurie Hospital physicians specializing in areas such as urology and endocrinology. There is a medical ethicist on Garofalo's team. And the clinic will provide play groups for families of gender-nonconforming children and send experts into schools to train teachers and administrators how to accommodate transgender youths.

Terms such as "transgender" or "gender nonconforming" remain widely misunderstood, but experts generally agree that they describe people whose gender identity differs from the gender they were assigned at birth. The National Center for Transgender Equality estimates that 0.25 percent to 1 percent of the population is transgender, a range in line with estimates from sex researchers.

One of the primary psychiatric terms linked to transgender people is "gender identity disorder," though many prefer the term "gender dysphoria."

Experts are quick to point out that gender identity has nothing to do with a person's sexuality - a person with male anatomy who identifies as female might be attracted to men or to women. There's no direct correlation between the two, and gender identity comes about early in life, well before a child begins to develop a sense of sexual identity.

"It's not what these kids do, it's who they are," Garofalo said. "You don't wait until you're 10, 11 or 12 to decide whether you're a boy or a girl."

While many young children experiment with gender roles - like a boy who puts on his mother's makeup - true gender dysphoria can cause a child tremendous stress if he or she isn't allowed to dress and act in a way that feels right. Experts say it is not a passing phase; it is a lifelong state of being.

"A lot of times these families have miserable, unhappy children who aren't happy unless they're allowed to dress and act in a gender-variant fashion," Garofalo said. "You have to provide them with a nurturing environment and then see what happens."

For the family of a 10-year-old in Oak Park, Ill. - whose family asked that she be identified by her middle name, Kelly - signs of gender variance showed up early.

Born a boy, Kelly started donning oversize shirts and pretending they were dresses at about age 2.

"She would do that every night," said Kelly's mother, who accommodated her child's desires by buying pink toys.

"I'd be like, 'You're just encouraging this, stop it,'" said Kelly's father. "You think it's just a phase."

But then the boy discovered a box of Disney princess dresses belonging to an older sister and was in heaven, particularly drawn to a Snow White dress.

When Kelly was 31/2, the family went to Disney World and wound up waiting in line for nearly two hours to see one of the Disney princesses.

"That's when we realized this was something more," said the mother. "But we didn't have any resources. What do you do?"

The family decided home would be Kelly's safe haven, a place to freely dress and play as a girl.

Kelly "would come home, and there would be a trail of clothes on the floor, and she'd be in her girl clothes," her father said.

By the end of kindergarten, the family decided it was time to let Kelly fully transition to "her." She recalls that day vividly, how she left her classroom and went to the bathroom to change into a skirt and a princess T-shirt. With her mother's help, she explained to the class that, as she says now, "I'm a girl in the heart, and a boy in the brain."

Although the family praises the Oak Park school district for accommodating Kelly, the road hasn't been easy. Kelly has been bullied, though she said it has gotten better. She now has a circle of close girlfriends she hangs out with, doing all the things 10-year-old girls do: listening to music, going to theater camp, having sleepovers.

To find appropriate medical care, Kelly's parents had been taking her to Charlotte, N.C., to see a pediatric endocrinologist who specializes in gender-nonconforming children.

But now the family sees Garofalo at the Lurie clinic, which is both a convenience and, for Kelly, an affirmation.

"It's kind of nice to go somewhere that has people who actually recognize someone like me," she said.

Jae's story is a bit different from Kelly's - not surprising given that researchers say gender variance exists on a spectrum and each person is unique.

In third grade, still using the masculine pronoun "he," Jae declared that he was gay, and his mother began talking to other family members about the obvious dissonance her son was experiencing.

"For me it was like, 'What do you do? I don't know what to do,'" said Jae's mother, Lisa Salas. "Everyone in the family started researching."

Then one day a relative called and told Salas to turn on the Oprah television network to a show about transgender people. Salas and Jae watched the show and immediately saw a connection.

After reading more about what it meant to be transgender, Jae realized a person with male anatomy could have a female gender identity. He adopted the feminine pronoun "she" and began transitioning to life as a girl. It made her feel whole.

"It felt really good to finally know what I am," Jae said.

"I did not mourn the loss of a son," Salas said. "I just have a daughter."

For Salas and for the Oak Park family, more difficult decisions lie ahead.

Garofalo said puberty is a dangerous time for transgender children.

"Menstruation, for example, can make transgender people very depressed," he said. "There can be very negative psychological consequences to have someone develop the male or female characteristics that come with their biological sex when that's not the gender they identify with."

Studies have shown that transgender children, many lacking family support and access to medical services, have a considerably higher rate of suicide, homelessness and HIV infection. Garofalo has seen these problems firsthand through his work on HIV prevention, and said that's part of what motivated him to establish the gender-identity clinic.

"I've seen extreme cases where young children will self-mutilate," he said. "Some wind up homeless or in the sex trade. The key for most of these kids is their parents and families."

As children get older, Garofalo and his team typically discuss different options with families, including putting a child on a drug that will suppress puberty. Because the effects are reversible, these drugs can buy time for the child to become more conscious of his or her gender before proceeding with hormone treatment, which promotes the development of secondary sex characteristics that would match gender identity.

According to the standards of care set forth by the World Professional Association for Transgender Health, hormone treatment should not begin until age 16, and the adolescent should be under the care of a mental health professional.

"These are family decisions," Garofalo said. "I'm not playing God. I'm doing the same job I would do with any family. I'm helping them make decisions about what's best for their child."

Jae said she's eager to reach an age when she can safely take hormones.

"I want all the things that girls have," she said. "I don't like to wait."

Kelly, on the other hand, feels more comfortable with the fact that she has male anatomy.

"I don't care because I'm both, so it doesn't matter," she said. "Half and half."

Kelly's mother said they will likely try to block puberty when she reaches that age, giving her additional time to mature and make decisions about future treatments.

"Each child has their own path," said her mother.

http://www.bellinghamherald.com/2013/03/28/2942866/new-clinic-helps...