"Stay Away from People with HIV?"

Below is the continuation of the previous blog post regarding a child's experience with disclosing her HIV status at school.

Even though I told my friends I had HIV, everything was still okay. Everybody was acting the same. Well, not everybody. Mary* was acting funny with me. When I went into the bathroom, she would leave. When we had science lab, she would switch partners. Outside, she would play with other friends, but not with me. I knew it was about my HIV, but I couldn’t prove it.
I got lucky one day at recess. My allergies were really bothering me, and I had to stop playing and sit down. My eyes were watering really bad, so I was rubbing my eyes and stuff. Mary came over and said, “I saw you stopped playing. Are you crying?”
“I’m not crying,” I said.
“Yes, you are! Your eyes are watering!” she said. Before I could explain it was my allergies, she said, “It’s okay. I know what’s wrong. You’re sad because I won’t play with you anymore, right?”
I said, "Why don't want to be my friend? Is it about the HIV?”
“I AM your friend!” she said. “I just don’t want you to touch me, that’s all. My mom says if anybody has AIDS, stay away from them. They can give it to you, and you can die right away. I don’t want to get it, so I want to be your friend, but just not the normal way.”
I could NOT believe it. “Your mom is wrong!” I said. “She doesn’t understand about HIV. Do you really think someone is going to die in 5 seconds if someone with HIV touches them? Then why aren’t you dead? I’ve touched you all school year. Why isn’t the teacher dead? Why isn’t the whole class dead?”
“I don’t know…” she said. I cut her off.
“You go to the doctor, right?” I asked. “Yes,” she said. “Well, did the doctor tell you have HIV? No, he didn’t. It’s not that easy to get. Ask your doctor if you don’t believe me.”
“My mom is smart,” she said. “She wouldn’t lie about this.”
“Maybe she wouldn’t lie, but even smart people can make a mistake,” I said. “What your mom said is not true. Look, if you don’t want to touch me, then I don’t want to be friends. I don’t need a friend who is scared to be around me.”
“I DO want to be friends!” she said. “Is it okay if I only touch you a little though? My mom said if I play with you, I have to be careful.”
I still thought it was silly, but I decided to be nice. “Okay,” I said. “We can still be friends. Just stop acting so freaked out about it.”
“I promise I’ll try,” she said.
I don't know if I trust her, but I'll give her another chance.

Kids will be kids...

Recently, my daughter spontaneously decided to disclose her HIV status to some friends at school. Though we have completely disclosed to family and close friends, we had not done so at her school. However, she felt that it was important to her that her friends were aware of her status, and broke the news. Here is her account of how it went (with Mom's grammar and spelling editing):

"One day I was playing with my friends at recess, and I tripped and fell on the blacktop. My knee started bleeding really bad, and it kinda hurt. My friends rushed over and tried to help me clean my leg. I told them I was fine, and that they didn't need to help me; all I needed was for them to help me up. One of them still kept trying to reach near me leg, so I told them not to touch my blood or anybody's blood. Then I went to the nurse and got cleaned up and put on a Band-Aid. When I came back, we were in the cafeteria. Everybody kept asking me, "Why were you acting so weird? Why couldn't we touch you on your knee? It was just a little blood, not a big deal." I answered them, "It was a big deal. You're never supposed to touch anyone's blood because you don't know what they have." I could tell they weren't really paying attention and didn't think I was making sense. I was frustrated because it's like kids don't know anything! I felt like I needed to talk to people about HIV and stuff--how you can get it and how you can't. Like just get up on the school stage and talk about it or something, but I couldn't. If I just walked on the stage like that during lunch, I could get in big trouble. And anyway I would be nervous to do it by myself. I can get on stage and do stuff with other people, but by myself I would get nervous and start to sweat a lot and feel like i have to pee! So I decided to just tell my friends instead of everybody.

"Guys," I said, "Don't freak out or tell everyone in the whole school this." I said to myself, calm down and relax. "I have something to tell you. I have HIV."
They looked surprised. "How did you get it?" they asked.
I said, my mom had HIV and didn't know, so I got it too.
"What if you touch someone?"
"If I touch someone, you won't get it. But you shouldn't touch someone's BLOOD, because HIV is in the blood."
"What if you don't know you have it? Could we have it?"
"No, you would know if you did something where you might get it. Like get born with it, or have sex [Mom's note: we've talked about sex, but I never used the actual word and didn't even know she knew it! That's a conversation in itself...] without using protection or share shots. You go to the doctor, and they can tell you if you have it."
"How did your mom get it?"
"IDK," I said. "It doesn't matter how. Even if you have HIV, you can still be a normal person."

This is generally how the first part of the conversation went. In the next post, I'll share how she told me they reacted.

The scariest thing about having a child with HIV

I get a daily Yahoo feed of news stories related to HIV and one of the ones today sent chills down my spine. You can find it here http://www.4029tv.com/news/19769264/detail.html about a young person who made a very foolish decision and is being subject to psychiatric evaluation and felony charges over it. It is the same chill I get when every other day or so there is a story about a person with HIV who is being criminally prosecuted for "HIV transmission", for having sex with someone without telling them their status, which frequently in the story ends up being made into a pathological attempt to have sex with lots of people and infect them with HIV. It is to me the scariest thing about having a child with HIV and being at all open about it. What scares me is not the messages that I will give my children about sex and responsibility; I feel very clear about that. What scares me is that even the best teens make foolish decisions, for so many reasons, and our kids with HIV will be held to such a higher standard than all those other kids (who may have had more sexual relationships and have other STDs). I don't know if people who are adopting young kids and choosing to be very open are thinking about this, but it is definitely something to think about. And then you think about malicious people out there. I have such mixed feelings about this issue related to disclosure. There is NO SHAME in having HIV, but there is still so much ignorance and the legal implications of our kids making heartbreaking foolish decisions could be not only in the legal system but also in the media, as this young person's name is out there forever. It is really scary to think that the foolish decisions that so many youth make could have such heartbreaking results for our kids. I know that you can't protect your kids from everything; I just wish I could protect them from these high stakes consequences to a momentary lapse of judgment.

Who knows

I love parenting my daughter. In the time since she's been home, having HIV has one of the smaller parts of our concerns, as she has learned a whole new language, started school, made friends, and we have bonded as a family. Every parent wants their child to do well, to make friends, to have happy relationships. Just yesterday she came home from school again talking about which girls have decided who they are not friends with, that one of them said they are not going to be her friend anymore (this changes every day--they are 6-7 year old girls!) But when you layer HIV over that, it has a different feeling to it. You think, it is 2008, almost 2009, but there are still people responding to HIV with 1990s knowledge. One of the hardest things is trying to figure out how open to be with others about your family having an HIV+ family member. You never know how others will respond, or who else they might tell, and what lack of information they might have. But you also don't know how they might respond if you develop a relationship with the family and later on you tell them your child, who they have known for months or years, has HIV. Is it better to tell them early on, and let them have time to accept or reject your family, or is it better to not tell them at all, and it possibly being an issue later on? Shortly after adopting my daughter, we met a family who was from her country (having immigrated to the US with their children) who had a daughter the same age. I felt so burdened that if we were going to be close friends with them over time, I should tell them so that if they were going to freak out about it, they would do it before we got too close to them. They were very nice and had realistic questions, and said that it wouldn't affect our children's relationships, and said that they were appreciative to know. But then for quite a while, every time I'd call to get our kids together, they would say they were very busy and maybe we could figure out another time. I felt so burdened every time I'd see them and would think, have I ruined this chance of my daughter having a relationship with this family from my daughter's country? I would feel sad every time I'd see them (they lived close to us) and very awkward talking with them. At one point, I did end up asking (indirectly) if having told them that my daughter had HIV was the reason they couldn't find time to get the kids together to play. They said that of course that was not the reason; they were just very busy and overwhelmed with everything their kids were doing. I think that was largely true, and we did end up after awhile getting the kids together several times, mostly because the kids would see each other at the playground or around the apartment complex and gravitate towards each other. As it turns out, we didn't become close with this family, so part of my reasons for telling them didn't end up to be the case. And the kids considered each other best friends regardless of any remaining awkwardness between their parents. I still think I would prefer to tell someone before we get too close to them as a family, but it is always there in the background. I know that as my daughter gets older, I am giving her tools to deal with people not choosing to be her friend for various reasons, for answering questions about different kinds of families, and to understand her own health and advocate for herself in various situations. It is all just more complicated than I even anticipated and as a parent, with so many things, there are no easy answers.