Monday, November 29, 2010

Letting the World Know...

...that it CAN be done! Extra, extra, read all about it! The December 6th issue of People magazine, which came out last week, features a phenomenal story on HIV adoption. (Go out and get one if you haven't yet!) It is so exciting to see a family with HIV+ members portrayed in such a positive and NORMAL light. HIV should never prevent a child from having a family, and it shouldn't cause a person to have to hang their head in shame. It is a manageable chronic illness, and this story gives me hope that people will read the article, look at the images of a happy, HEALTHY, multicultural family which happens to include HIV+ members, and go out and re-educate themselves about HIV. Or better yet, get tested! Even better than that, maybe consider getting involved in some way, maybe by connecting with an AIDS service organization or community group in their area, maybe by helping to dispel HIV myths among their friends and family, maybe by making a donation of time, resources, or funds, or maybe by adopting an HIV+ child!

Sunday, October 31, 2010

"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.

Thursday, October 14, 2010

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.

Friday, December 11, 2009

"A Princess that's brown like me!"

(The title of this thead is a quote from my 3 year old niece.)

Today is the official opening of Disney's "The Princess and the Frog." As many of you know, this will be the first major animated motion picture that features an African American heroine. As a result, it is an exciting day for many young girls, especially girls of color. (And, admittedly, it is exciting for many adults of color as well; though I'm in my thirties, I am pleased to be able to experience the unveiling of Princess Tiana myself, as I longed for someone, ANYONE, who resembled me while I was growing up watching animated shows and movies (well, we did have "Storm" from X-Men, I suppose.)

There has been great deal of controversy regarding this film. Some of it might be legitimate, and some of it is probably not. I'm not going to rehash that argument here; certainly there are elements of The Princess and the Frog that I am not crazy about, and will have to explain to my daughters. But I am happy for what this film represents, and that is the message that African American women are just as worthy as the other races of women Disney has portrayed.

As the pediatric HIV community is disproportionately made up of children of color, it might be beneficial for other adoptive parents to take their children to see this movie so that they, too, can celebrate the beauty of brown-skinned and all people together. But even those who are not of color should still consider giving the movie a try. A very good friend of mine from undergrad, who is white, is taking her cousins, who are also white, to see the film, just as she take them to see other "kid-friendly" blockbusters.

See you at the movies!

Monday, November 2, 2009

At last!

Friday was a huge huge day for people with HIV, those who love them, and those who love justice. For 22 years (22 years!) the US government has prohibited people with HIV from receiving a visa to the US except under limited and burdensome bureaucratic circumstances. Friday was the signpost that it is no longer a question of if the outdated provision would be lifted, but when, that is days not years away. From the White House web site: "Since 1987, HIV-positive travelers and immigrants have been banned from entering or traveling through the United States without a special waiver. In July 2008, Congress removed all legislative barriers to repealing the ban and paved the way for HHS to repeal the ban. A final rule will be published in the Federal Register on Monday, November 2nd and will take effect in early January 2010. That means that people who have HIV and are not U.S. citizens will be able to enter the U.S. starting in January next year. This is a major step in ending the stigma associated with HIV." This policy was put into place when HIV was barely understood, when there was so much fear of how HIV was transmitted, when we thought the threat came from "those people," from outside our borders, not from (primarily) our own behaviors and circumstances. Due to work by a lot of HIV advocacy organizations, in July 2008, the international HIV assistance (PEPFAR) bill took out the language that made HIV as a defacto prohibition to a visa, but it was still on the list of public health conditions that barred a person from a US visa. As a family affected by this unjust and outdated policy, I can tell you that while waiting, every day I would search the news and the Federal Register to see if it was the day that this policy would be lifted. I even added a special search alert to my email so that I would get an email if there was any news on this. And others waited much longer than this, and with heartbreaking results, for this policy to be changed. It is 2009, and when 2010 comes, people with HIV, including children being adopted, but not only children, will be acknowledged as people and not as vectors of infection who need to be barred from our shores. There is still so much to do to decrease stigma and discriminatory practices, but this is HUGE!

For the record:

HIV can NOT be spread through casual/household contact. HIV is not spread through hugging, kissing, shaking hands, sharing toys, sneezing, coughing, sharing food, sharing drinks, bathing, swimming or any other casual way. HIV and AIDS can only be spread through sexual contact, birth, breastfeeding and blood to blood contact (such as sharing needles).
HIV is now considered a chronic but manageable disease. With treatment, people who are HIV+ can live indefinitely without developing AIDS and can live long and full lives.
People who are HIV+ deserve to be treated with love, respect, support and acceptance as all people do.

Additional information on HIV can be found on the Centers for Disease Control website.

I couldn't agree more with these remarks, made on the reauthorization of the Ryan White Care Act, which provides medical care and resources for so many people with HIV/AIDS here in the US, and the announcement that the immigration ban is on its way out.

"We often speak about AIDS as if it's going on somewhere else. And for good reason -- this is a virus that has touched lives and decimated communities around the world, particularly in Africa. But often overlooked is the fact that we face a serious HIV/AIDS epidemic of our own -- right here in Washington, D.C., and right here in the United States of America. And today, we are taking two important steps forward in the fight that we face here at home.It has been nearly three decades since this virus first became known. But for years, we refused to recognize it for what it was. It was coined a "gay disease." Those who had it were viewed with suspicion. There was a sense among some that people afflicted by AIDS somehow deserved their fate and that it was acceptable for our nation to look the other way. A number of events and advances over the years have broadened our understanding of this cruel illness. One of them came in 1984, when a 13-year-old boy from central Indiana contracted HIV/AIDS from a transfusion. Doctors assured people that Ryan White posed no risk to his classmates or his community. But ignorance was still widespread. People didn't yet understand or believe that the virus couldn't be spread by casual contact. Parents protested Ryan's attendance in class. Some even pulled their kids out of school. Things got so bad that the White family had to ultimately move to another town.It would have been easy for Ryan and his family to stay quiet and to fight the illness in private. But what Ryan showed was the same courage and strength that so many HIV-positive activists have shown over the years and shown around -- show around the world today. And because he did, we didn't just become more informed about HIV/AIDS, we began to take action to fight it. In 1990, the year Ryan passed away, two great friends and unlikely political allies, Ted Kennedy and Orrin Hatch, came together and introduced the Comprehensive AIDS Resources Emergency Act -- the CARE Act -- which was later named after Ryan." "But it will also take an effort to end the stigma that has stopped people from getting tested; that has stopped people from facing their own illness; and that has sped the spread of this disease for far too long. A couple of years ago Michelle and I were in Africa and we tried to combat the stigma when we were in Kenya by taking a public HIV/AIDS test. And I'm proud to announce today we're about to take another step towards ending that stigma. Twenty-two years ago, in a decision rooted in fear rather than fact, the United States instituted a travel ban on entry into the country for people living with HIV/AIDS. Now, we talk about reducing the stigma of this disease -- yet we've treated a visitor living with it as a threat. We lead the world when it comes to helping stem the AIDS pandemic -- yet we are one of only a dozen countries that still bar people from HIV from entering our own country.If we want to be the global leader in combating HIV/AIDS, we need to act like it. And that's why, on Monday my administration will publish a final rule that eliminates the travel ban effective just after the New Year. Congress and President Bush began this process last year, and they ought to be commended for it. We are finishing the job. It's a step that will encourage people to get tested and get treatment, it's a step that will keep families together, and it's a step that will save lives. We are continuing the work of crafting a coordinated, measurable national HIV/AIDS strategy to stem and suppress this epidemic. I'm pleased to report that the Office of National AIDS Policy, led by Jeffrey Crowley, has already held eight in a series of 14 community discussions in cities across the country. They've brought together faith-based organizations and businesses, schools and research institutions, people living with HIV and concerned citizens, gathering ideas on how to target a national response that effectively reduces HIV infections, improves access to treatment, and eliminates health disparities. And we are encouraged by the energy, the enthusiasm, and great ideas that we've collected so far. We can't give Ryan White back to Jeanne, back to his mom. But what we can do -- what the legislation that I'm about to sign has done for nearly 20 years -- is honor the courage that he and his family showed. What we can do is to take more action and educate more people. What we can do is keep fighting each and every day until we eliminate this disease from the face of the Earth."
YAY!!! And here is the official announcement!! Oh Happy Day!!

Tuesday, June 16, 2009

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 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.

Tuesday, June 2, 2009

An unspoken hero--my daughter's teacher

My daughter ended first grade last week, and it was full of mixed emotions for both of us for many reasons. Though I am happy she will be moving on, it is with a heavy heart that I say farewell to her teacher. He has been a phenomenal educator as well as a good friend to us. Mr. T (to protect his privacy) has a true passion for educating youth, particularly foreign language learners. He searches for ways to help make learning fun as well as challenging for his students. He opens up to them, and shares personal stories to make his lessons come alive, and he utilizes technology on a regular basis in unconventional ways to hep the kids become more savvy. He emphasized the importance of living "green" in a variety of projects throughout the year. And he treats the students with respect and expresses genuine concern for their happiness and well-being. I suppose this is why my daughter selected him as the first person she chose outside of family and close family friends to disclose her HIV status to. In that, he will always be a special "first" for us, even outside of his other positive attributes.

One day, my daughter decided that she wanted to tell her teacher, Mr. T, about her status. I wasn't certain at first if she was serious, as it was something she said in passing. But then she mentioned it again. And again. And again. It became something she brought up daily. She was convinced that he wouldn't have a problem with her diagnosis, and felt very strongly about sharing it with him. I wasn't sure what to think. After all, although disclosure is not required where we live, I'd already voluntarily informed the Medical Director of our school district. I didn't see the need to also share with people at her school campus. But I didn't want to censor my child either. So after we discussed it at length, we decided that she and I would meet with her teacher during his conference period within the next two days and tell him. We chose that date because she felt an urgent need to talk about it, but Mr. T's policy was that he needed a minimum of 24 hour's notice to schedule meetings with parents to avoid time conflicts. This gave me a day to email him and set up the meeting. happens. The next day was crazycrazycrazy at work, and emailing him totally slipped my mind until I got home that evening. I emailed him and hoped for the best. But I didn't get a response until the next morning (the day of the hoped-for meeting). In his email, he stated he hadn't read my message until he returned to the classroom that morning, and unfortunately he already had a meeting scheduled with another parent. Could we meet the next day instead? My heart sank when I read his words. Earlier that morning, while dropping my daughter off at school, she'd happily reminded me that today was the day of our " 'portant meeting" with her teacher, and told me not to be late.

"Yes," I wrote, "we can meet tomorrow. I apologize for writing so late; my daughter ___________ really wanted to meet today, but I understand that you're already booked. Please tell her that I won't be coming by today. Thanks for accommodating us."

That afternoon when I picked her up, she skipped over to my car, hopped in, and casually mentioned while buckling her seat belt, "I told Mr. T."
"You did what?" was my reply.
"I told him that I have HIV. He told me you couldn't come today, so I decided to tell him by myself."
"What happened? What did he say?" I asked.
"He was fine," she said breezily. "Can we stop at Smoothie King?"

My heart was racing. This wasn't the way I'd planned it at all. I'd wanted to come in and have a discussion armed with my HIV handouts, with a list of URLs about HIV, and mentally prepared to answer questions. That clearly wasn't going to happen. Now what?

The next morning, I prayed on my way to the school for the meeting which now seemed to be in vain. I signed in at the office and Mr. T arrived punctually as always and greeted me with a smile. "The kids will be out of library in a few minutes, and then I can bring her to join us," he said, referring to my daughter. I told him that wasn't necessary; he and I could meet alone.

We sat down in the classroom and stared awkwardly at each other. I took a deep breath and started to speak, but Mr. T jumped in before I could say very much, and told me that he knew and that he felt very honored that my daughter trusted him enough to tell him about her status. He said that he thought she was a very brave, very special girl, and that he would respect her privacy. Then he asked if there was anything more he could do in the classroom to ensure that the other kids didn't get HER sick, pointing out the bottles of hand sanitizers on each desk and the Lysol and cleaning wipes located near some of the centers.

I was so touched by his reaction that I really couldn't find words at first. Then I thanked him for understanding, and we proceeded to have a very interesting discussion about HIV and adoption. We were so engrossed in conversation we almost went over the allotted time! Afterward, I thanked him and left.


And, well, nothing! He continued to treat her the same as always--kindly, but not like she was a danger, "different" or in need of pity or sympathy. One day, months later, she got hurt on the playground. She came home with a bandage over a scrape that had clearly broken the skin and bled. Apparently he cleaned the wound without any fanfare, bandaged her up, and sent her back to play. I didn't get any calls from work to pick her up, or any email as an FYI. It was treated the way it would have been if any child in her class had gotten a minor incident.

So thank you, Mr. T, for all that you do, and for all the people out there like you. You judge a person by who they are rather than by three letters on a piece of paper. Thank you for helping to build my daughter's confidence this year and helping her to learn that disclosure deoesn;t have to have disastrous results. Thank you for challenging her in her schoolwork, and for the many conversations we've had regarding school, behavior, and various issues. I always felt that you respected me as a valuable part of my daughter's academic and overall growth.

Thank you for being who you are.