Our Visit to the Lurie Children's Hospital Gender Clinic

At TransHealth in June, I had the opportunity to hear Dr. Jo Olson speak. She is director of the Transgender Youth program at Children's Hospital Los Angeles, which until very recently was one of only two programs in the US dedicated to treatings trans youth; the other is in Boston. Recently, the Lurie Children's Hospital in Chicago has begun to work on creating a gender clinic as well; not officially open yet, the clinic already has around 75 patients, from age 4 to early 20s. Chicago is only four hours from us, so I was excited to learn about the Lurie clinic, and assumed the Tiny Tornado would be a patient there someday.

But when? I went to Dr. Olson's presentation with a burning question: at what point should we make contact with a gender clinic? The Tiny Tornado is years away from puberty, and has no behavioral or psychological problems. Should we get started early, or wait until it's time to consider puberty blockers?

Dr. Olson talked about many other topics of interest to me, and I learned a great deal. In fact, I have another blog post to write about all the notes I took in her presentation. But as I listened and took notes and found little nooks and crannies in my brain to store all the new information, I was still thinking: When do we take the Tiny Tornado to a gender clinic?

Dr. Olson's presentation ran over, and she had said nothing about this. I raised my hand, but others with questions were called on first. The answers to their questions were long and complicated. I raised my hand more forcefully, but I was in the very back of a large and crowded room and went unnoticed. Dr. Olson began to mention more often how much the session was running over. The people leading the next session in the room began to mill about near the door, looking cranky. Dr. Olson was about to wrap things up, and she hadn't answered my question. "I am not letting her out of here without answering me," I said to myself. "I will tackle her in the hallway outside if I have to."

I didn't have to. In the middle of the very last question she took, she digressed to say that she often doesn't see kids until they're in crisis in one way or another. "If I had my way," she said, "I'd have these kids in my clinic at 4, 5, 6, 7, get to know them, have a baseline, have the chance to avert some of the crises."

I had my answer. And as soon as we got home to Michigan, I called Lurie and made an appointment to visit the children's gender clinic.

Raider, the Tiny Tornado, and I drove to Chicago yesterday for our appointment. The clinic has two pediatricians and a psychologist on staff, and will be adding another doctor in the fall. We talked mostly with Dr. Gales, but we also met the clinic director, Dr. Garofalo; the staff psychologist, Dr. Chen;and the friendly, efficient, and quick-witted administrative person who helped me set up the appointment, Jen Leininger.

Everyone was very welcoming, and they seemed delighted to meet the Tiny Tornado. We ran through a short version of the Tiny Tornado's gender history with Dr. Gales, and it was such a relief and pleasure to be with someone to whom nothing had to be explained. I realized partway into my recitation that I am always, when talking to people about this, braced for conflict, or for the rude question I've answered a hundred times before, or prepared with an overabundance of evidence to make my case. With Dr. Gales, we just had to hit the highlights, and he listened openly and nodded in a "Yep, that's about what we'd expect," kind of way.

We had one fun moment when we were talking about TT's first haircut--the mohawk he got just before he turned three--and I delivered my usual rant about "But I learned how to do the hair! The oiling, the combing, the parting, the braiding--all for nought." Dr. Gales, who is black, said, "Well, if my partner and I end up with a girl, I'll call you. I've been terrified about the hair thing. I know nothing!" I was like, "Oh, heck yeah, I can hook you up. I have resources."

Dr. Gales talked to TT for quite awhile. He reassured TT, who worries about his body betraying him and growing breasts when he gets older, that he has nothing to worry about, that his body is not going to change for a long time, and there are things the doctors can do to make sure it changes in the ways he wants. He told TT, "It's your job right now to enjoy turning six, have fun in kindergarten, keep growing. I don't want you to worry about this at all."

We've been telling TT for some time that there are doctors who can help him grow up as a boy, if that's what he continues to want. Now those doctors have names and faces. TT hasn't wanted to talk about the appointment with us, but he smiled broadly and nodded when asked during the appointment if he was glad to be meeting them. Though Dr. Garofalo commented that he doesn't think they'll necessarily be TT's doctors long-term--this is an "exploding field," he said. By the time TT is 11 and likely to be encountering puberty, there may well be someone closer than Chicago working with transgendered kids ("though doing it well," Dr Garofalo said, and shook his head).

Dr Gales also told TT that he's a "trailblazer." TT is part of a cohort of young children--there are several others, as young as four, who are patients at Lurie as well, and others elsewhere in the country--who are the first ever to have access to quality care for gender dysphoria at such a young age. Dr. Gales told TT that, as they help him, they will also be learning from him, and what they learn will help them do even better with the kids who come along later. This kind of went over TT's head but it meant a lot to me. The Tiny Tornado has been a lot of people's "first," including the staff at his school, and most of our friends and family. Although people have been overwhelmingly supportive and positive, he will continue to be in the position of educating people by his very presence, and by the conversations that we need to have in order to make sure he's treated appropriately and has the support he needs. This isn't always easy and, although we've encountered very little, there is always the possibility of judgment or hostility.

In addition, I've struggled with my conscience over my decision to share TT's story on my blog, on Facebook, and, soon, in Friends Journal. But you know, writing about my life is what I do. It's my talent, my gift, my ministry, and, about some things, my obligation (it's also my pleasure). If TT really is among the first kids to have care from a young age, then he might not have the luxury of perfect privacy. Partly just because I'm his mom, and this is what I do. If he wanted a more private type of mom he should have arranged with God to be adopted by a different family. But partly because he is a very resiliant, self-assured, powerful child and, it seems to me that we might have a job to do, one that would be impossible for a different kind of kid and a different kind of mom. Certainly Raider has commented that one thing we bring to, say, the parent support groups at TransHealth is our totally calm assumption that the Tiny Tornado is OK as he is, and that things are likely to work out fine.

This was one of the interesting things about our talk with Dr. Gales: we did not require the usual degree of parent education or reassurance. "I do affirm everything you're doing," he said, and that was nice. The next time anybody gives me trouble about it, I have a board-certified pediatrician with expertise in this area to back me up.

I mentioned seeing Dr. Olson at TransHealth, and Dr. Gales said that not only do they know her well, but there are so few doctors doing full-time work with trans youth that they have a conference call every week. The group of them are seeking NIH funding to do some research into treatments and best practices, and it's possible that TT will be part of a research study at some point. Like Dr. Garofalo, Dr. Gales commented on how fast the field is growing, suggesting that, by the time TT reaches puberty, there may be more treatment options than just hormone blockers. That will be interesting to see.

As well as being a trailblazer, we get to be followers as well. Dr. Gales mentioned that they have a female-to-male teenager in the clinic who is dealing with his school around participation sports--the hormones he is taking are technically banned substances. This has been something I've thought about many times, with TT being as athletic as he is. What if he wants to participate in team sports when he's older? It's good to know we're not going to be the first family facing that issue, and I am holding the young man we heard about in the Light.

In some ways, not much happened in the meeting. We chatted, we smiled, the Tiny Tornado fist-bumped everybody on the way out. But we accomplished our goal: we made the connection. We made the possibilty of medical assistance more concrete for TT. We established a relationship so that, if problems come up, we're not scrambling to find help. I feel surprisingly buoyed up, and less alone, although I would not have said before yesterday that I felt alone on this journey.

We'll go back next summer. At some point, we'll start going every six months. Eventually, there will be decisions to be made. It's good to know that there are people out there dedicating their careers to figuring out how to help us, and other families like us, make them.

Posted with Blogsy