Now in its second year of full-time operation, Lurie Children's Hospital's Gender & Sex Development Program currently serves 80 transgender, gender questioning, gender queer and disorders of sex development ( DSD ) children and their families.
Dr. Rob Garofalo, MD, MPG, is the co-director and founder of the program that is in an ongoing evolution and is on the cutting edge of affirmative care for gender non-conforming and DSD children in the Midwest along with research programs that will eventually help Garofalo and his team solve some of the enigmas that surround a relatively unexplored area of pediatric medicineone which has the parents who discover and enter their children into the program either through referrals or their own research seeking answers to a great many questions.
"A number of families with younger children are really just coming to establish a connection with a medical home," Garofalo said. "So that they can get some answers and some support and access our mental health services. There aren't many medical interventions [administration of puberty blockers and/or cross sex hormones] that are done with a five or six year-old. That changes when you have kids that are beginning to go through puberty and that's when these families face some challenging decisions about what they are going to do."
Three families volunteered to talk candidly with Windy City Times about their lives with a gender non-conforming child, their search for answers and their experience with the Gender & Sex Development Program. Although there are a number of trans male kids in the program, the families who agreed to be interviewed have children who are either already presenting as female or leaning towards female while leaving the question of their gender identity open.
Veronica, George and Nicole Caballero
Veronica and George Caballero are from Aurora, Illinois. Veronica is a nail technician and George is a forklift operator. They have a teenage boy and three daughters. Nicole is their 14-year-old. She is a participant in the Gender Development clinic. Flanked by her parents and younger sister, Nicole talked candidly about her own journey of discovery. Nicole presented herself as intelligent, remarkably candid and quite pragmatic about her experiences. Despite currently being in the midst of the often dehumanizing environment that is an American middle school, an inner peace seemed to radiate from the young girlas if she had found a point in life, where nothing could possibly phase her.
Nicole said she had always thought that she might be transgender. "I felt that I could relate to other transgender people," she said with a smile. "So I opened up to my family about what the process was and had deep conversations with them about what I felt since I was born."
A great many of Nicole's early memories centered around envy of a girl's way of life. "My older sister was my best friend when we were younger," she said. "We used to play together all the time and imitate characters we saw on TV, like Hannah Montana or Zoey 101. Because I envied a girl's life, I always felt like I could be myself when I played. So that's about when I knew that I would much rather have been a girl and sometimes I prayed I would wake up in a girl's body.
When she was older, Nicole discovered the term transgender for the first time. She had watched a documentary in May 2013 called "I AM JAZZ: A family in transition"that follows the life of an 11-year-old transgender girl and her family. "I was really inspired by it because she was so young," Nicole remembered. "Everything was just so accepted by her family and they were making plans for her. And here I was growing up as a male. So I was like, 'before I get any older, I need to tell my parents about this.'"
Veronica recalled thatat firstNicole came out to her as gay. "I was like 'you're too young, how do you know? Let's talk about this,'" Veronica said. "So we went to counseling. But then I found some pictures on her iPad where she was wearing my extensions and girl's clothes. But I respected that. Thenone dayshe sends me a video and she says 'Mom, you have to see this because this is exactly how I feel.' It was the video of Jazz."
George said he already had a fairly good idea about Nicole before she told him. "I was comfortable with it because I have family members that are LGBT," he said. "So I was OK with it. I loved her more and I had so much more respect for her because she came out at such a young age. I just thought it was pretty brave."
Meanwhile, Nicole was already online and had researched Garofalo and his team for herself. "She kept sending me links," Veronica said. "She knew exactly what she wanted."
The onset of puberty had already started to affect Nicole when she began medical intervention with the Gender Development Clinic. "It made me insecure about things, because my voice had changed and that's key to communication," Nicole said. "I was thankful that I could get around and be identified as a female butat the time I felt like I wasn't going to sound like a female. I wanted to be singer when I was younger so when puberty hit my voice, I thought it wasn't going to happen for me anymore."
Nicole's first visit to the Gender Development Clinic was with her mother, since George had to work that day. "It was a little overwhelming at first," Veronica laughed. "We met Dr. Garofalo and the whole team and they were throwing all these words out that I really didn't know but Nicole knew because of all the research she'd done. I remember they mentioned Spironolactone and I was like 'Spy-what?' and Nicole just said, 'It's a testosterone blocker, mom.'"
Veronica said that the team did exactly what she had hoped for. "My intentions were for Nicole to go through some psychological counseling," she said. "Because I wanted to make sure that it wasn't a phase. I mean I was going to have to fight for her so I needed to be sure that this was really what she wanted. I also had to get educated and then come and tell George."
George described the conversation between himself, Veronica and Nicole when they returned from their first visit as "intense."
The family has since been on 20 or so appointments. "I feel like they have helped me with my decisions," Nicole said. "Usually when you make a decision, you think about what's going to happen and how it's going to benefit you. I mean, I already knew the basics but the doctors are so detailed with everything, it helped me with my own education. Now I make smarter and, I guess, more reasonable decisions. Like with Estrogen, I knew what it did but I didn't know how it was going to feel to be on it."
Nicole came out during her second year of junior high. "I lost respect from all of the guys," she said. "I could sense like, deep down in their souls, they would accept my sexuality but they were scared. I mean it's junior high and people aren't really that mature. So when one of them talks to me, I think he feels like everyone's going to think he's gay because he talked to me."
On the other hand, Nicole said the girls in the school have been extremely respectful. It was those friends who helped get her through the seventh grade. Teachers and staff have similarly been supportive. "They've shown a lot of respect for me," Nicole said. "Like, a lot of teachers warned me about boys who were saying something about me. They were really protective. The principal even went to talk to each of the classes."
"On the very last day of seventh grade there was a talent show," Veronica recalled. "Nicole sang and went all out with the whole female look. She turned so many heads and everybody got up and cheered for her. She took it upon herself to talk to the principal and then the principal calls me and said 'we're going to give Nicole her own bathroom and you have more allies than you think.' They really watch out for her."
That said, Veronica would still like Gender & Sex Development Program Director Jennifer Leininger to visit Nicole's school. "There's still some boys who are afraid to talk to her," Veronica said. "I don't think they understand what transgender is. I think Nicole's the only young transgender girl in this town so I would love for Jennifer to come and educate them."
Nicole said she's thought a little about dating, but that her ideas of a teenage relationship have evolved over the years. "I've seen a lot of my friends dating and stuff," she said. "and sometimes I feel lonely, butwhen I started this processI was like, 'hey' it's my time now. I think I deserve somebody.' I do believe that miracles can happen and if I do happen to meet somebody it will be a good thing."
Years from now, Nicole said she will be reaching for the stars. Now that she is able to be herself, she feels like she can accomplish anything. "I want to be on TV," she said. "I feel like, if I was famous there will be a fan base who will look up to me. I would love the feeling of setting an example for them."
For the moment, she is setting her sights on arts magnet schools in Chicago.
Christie, Rob and Elexa
Over three hours away in Kalamazoo, Michigan, Christie and Rob have a 6-year-old daughter named Elexa. They adopted her when she was two weeks old. Christie talked to Windy City Times by phone. She said that she and her husband first noticed something different about Elexa when she was between 16 and 18 months old. "We were paying attention to choices she was making," Christie said. "Loving pink, loving purple. Quickly that went into all things sparkly and dress up clothes. Things like that. We just allowed her to be herself."
In summer 2013, Elexa started to articulate to Christie and Rob that she wanted to marry a man. "She wanted to be the bride. She wanted to be a girl," Christie said. "So it was really just allowing her to explore and that usually meant wearing skirts and playing with girls more than boys."
The family connected with Lurie through a combination of their own research and their local therapist. "We have a great therapist here who has been guiding us along, "Christie said, "But she's not specialized in gender issues so we decided that we really needed to talk to some experts in that field. So I connected with Jennifer at Lurie and we made our first appointment. We traveled through the polar vortex to make it. We were pretty determined."
The couple began to officially transition Elexa following the two hour meeting with a pediatrician and a psychologist in mid-January of this year. "They let us know that we were on the right path," Christie said. "I mean it was all about how Elexa's behavior was and letting her lead us. It was pretty liberating I'd say."
She added that the greatest asset the program has been able to provide the family has been support even from afar. "Our first appointment had originally been scheduled for later in 2014, but by December last year, Elexa was coming home from school in a rage," Christie said. "We came to find out that she was physically getting bullied. She loves school but there were some kids who were just not understanding of her. So we realized we had to do something fast. The people at Lurie were really accommodating with us. Jennifer offered to come in and do some education with the school."
Both Christie and Rob were pleasantly surprised at the reaction of the local community. "My husband and I were both raised in traditional conservative families," Christie said. "Our Christian faith is very important to us. The town is pretty progressive and I surround myself with open-minded people. But everyone we have encountered just knew Elexa as always loving girl things."
Christie and Rob eventually moved Elexa to a private school where she is thriving after only a few weeks.
Donna, David and Ryan
Donna and her husband David live in the suburb of Lisle, Illinois. Donna asked Windy City Times to identify her family with aliases. When it concerns their seven-year-old child Ryanthe couple try to avoid specific pronouns.
Ryan was a natal male. Donna and her husband noticed something was unique about Ryan long before he/she did. "As young as two or three, in any role play that Ryan would do with his/her brother, at first he/she was always the bad guy and then Ryan was always a girl," Donna recalled. "Even the toys that are traditionally associated with girls or boyswhich is ridiculous by the waysort of clued us in. I have a bunch of old Barbie dolls from when I was a girl that we kept in the closet in case our nieces would come over. As soon as those came out, Ryan was all over them and I couldn't put them away. Our older son never cared to play with anything like that."
Donna and David originally thought that Ryan was just confused. "We didn't understand anything about what it means to be transgender," Donna said, "Not having anyone in our family who was even homosexual, I always assumed thatif you were a transgender personyou just liked to dress up, not that it was a core identity."
By the time Ryan was five, he wanted to be Daphne from Scooby Doo for Halloween. "We thought, 'you can't be Daphne, you're going to get made fun of," Donna said. "Looking back, I feel terrible for that because we've learned so much since then, but poor Ryan had to be Fred that year."
As Ryan got older, her/his feelings became more pronounced and Donna and David hit the books. As market researchers, they were information seekers by nature of their profession. "I realized that there are children who are transgender," Donna said, "And I thought maybe Ryan was a girl, so I asked her/him one day if he wanted to be a girl or if he was a girl. She/he said 'I am a girl.' I asked Ryan if he ever felt like a boy and she/he told me 'I didn't feel like I was anything.'"
In summer 2013, David read an article about the Gender & Sex Development Program. "We were thrilled to have something like that in our area," Donna said. "So we immediately called and made an appointment."
An initial consultation demonstrated to Donna and David that medically there was nothing to be done for a child as young as Ryan. "They said that there's really no test but that it's their goal some day to find a way to better guide parents as to what to do when your child presents with this," Donna said. "Soin one wayit was great to have them as a resource and in another, we still left feeling like nobody could tell us what to do and that we would have to figure this out for ourselves."
The program staff advised Donna and David to connect with families going through the same situation. "We joined a group in Arlington Heights called Pinwheels," Donna said. The group is designed for non-conforming children and their parents and describes itself as "a network of families embracing their children's gender non-conformity in a kind and loving manner." The meetings take place in a local church. There is a group of parents who talk together along with babysitters who watch the kids while they play.
"It's been nice because it is hard for us to get from here to Lurie in a timely fashion, Donna said. "To hear about other people's experiences has been our best support. It's great because we can tell Ryan 'there are other kids like you out there.' My husband and I both feel like it is important for Ryan to know that he/she is not alone and not the only one."
Ryan is in first grade at a public school. Donna said that he/she is the first gender non-conforming child in the district whose parents have come forward to address the school as to what the family is dealing with. "They've been very open and understanding," Donna said. "And they're learning right along with us. Jennifer came in and did a gender training that they really appreciated. They've worked hard to make sure all the kids are accepting of everybody. Ryan uses the nurse's bathroom. But just recently, she/he said that she/he wanted to use the girl's bathroom so I had to explain that it was a much longer conversation with the school and maybe we can figure it out for next year."
The Catholic church that the family attends has been similarly supportive. "It really hasn't been an issue," Donna said. "But we are wrestling with it now. The church isn't changing as quickly as we would like even with the new Pope, but it's hard to try and decide if we want to be trailblazers or of we want to raise our kids in a place where they will always be accepted and comfortable."
Donna said that meeting with other parents at Pinwheels has been extremely beneficial while they wrestle with each of the decisions that present themselves as Ryan grows up. "There are parents whose kids are older and they've had more experience," Donna said. "So it's been helpful to know that there are other people out there who get it and can support you. We can now do that for other people too. There's a couple of newer families who are where we were a year and a half ago andfor us to feel like we can help themis just as good."