Positive Families

Letting the World Know...

2010-11-29T23:02:00.002-06:00

...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!

"Stay Away from People with HIV?"

2010-10-31T12:17:00.002-05:00

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...

2010-10-14T01:17:00.001-05:00

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.

"A Princess that's brown like me!"

2009-12-11T14:19:00.002-06:00

(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!

At last!

2009-11-02T06:42:00.001-06:00

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!!

The scariest thing about having a child with HIV

2009-06-16T20:03:00.004-05:00

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.

An unspoken hero--my daughter's teacher

2009-06-02T11:24:00.005-05:00

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.

But...life 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....

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 hurt...as 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.

I will spew you out of my mouth

2009-05-07T08:01:00.005-05:00

Yes, that's a fragment of a Bible verse. But more specifically, it describes my feelings toward a nonsensical, discriminatory policy that's being applied to HIV + internationally adopted children regarding tuberculosis testing. To many of you, this has been a hot topic for the last couple of months...I'm referring to the sputum test. The Center for Disease Control and Prevention is requiring sputum samples as part of the embassy medical for all adoptions of HIV+ children. They confirmed that it WILL be required of all HIV+ kids, even kids under two years old, and the results may take up to two months to get back. The PPD (skin test) will not be permitted as a substitution. The reason being given for this is that this is the protocol for immigrants/refugees, and thus it is being imposed upon the children of US adoptive parents as well. The problem here is that the sputum test is not even the universally accepted manner of diagnosing TB!

Medline defines the test in this manner (laymen's terms): "A sputum sample is obtained by coughing deeply and expelling the material that comes from the lungs into a sterile cup. The sample is taken to a labarotory and placed in a medium under conditions that allow the organisms to grow." In other words, these poor children are being subjected to an unnecessarily invasive test as well as having their union with their new families further delayed due to bureacracy. There are so many things wrong with this policy that my brief post will not do justice to, but fortunately many individuals and groups within the adoption community are fighting against this. Visit Project Hopeful (http://www.projecthopeful.org/) and Equality for Adopted Children (http://www.equalityforadoptedchildren.org) to learn more and to find out how you can help stop this injustice.

World AIDS Orphans Day

2009-05-05T09:35:00.003-05:00

May 7th is the seventh annual World AIDS Orphans Day. There are various events occurring around the world to commemorate the day and call attention to the plight of the millions of children orphaned by the HIV/AIDS pandemic each year. Here is some information from www.worldaidsorphansday.org:

"May 7th is World AIDS Orphans Day, a grassroots campaign to draw attention to and advocate on behalf of the over 15 million children orphaned by AIDS.
Today, a diverse coalition of organizations, government officials and everyday citizens is urging the G8 and donor governments to ensure that 10% of all HIV and AIDS funding supports the needs of orphans and vulnerable children.

THE ORPHAN CRISIS
Over 15 million children worldwide have lost one or both parents to AIDS – equivalent to the number of people living in New York, Paris, and Bangkok combined. In sub-Saharan Africa alone, over 12 million children have been orphaned by the pandemic.
Experts believe that millions more orphans remain unaccounted for in India, China and Russia.
By 2010, the number of AIDS orphans worldwide is expected to reach at least 20 million.

The Impact:
In addition to the trauma of losing a parent, orphans are often subject to discrimination and are less likely to receive healthcare, education and other needed services.
In HIV affected households lacking community support, food consumption can drop by 40% putting children at risk to hunger, malnutrition and stunting.
Impoverished and often without support to educate and protect them, orphans and vulnerable children face increased risk of HIV infection.
Orphans are often easy prey to many forms of exploitation: forced labor, prostitution and child soldiering.

We are Neglecting the Needs of 90% of Orphans!
Despite progress preventing and treating AIDS, we are ignoring the basic needs of millions of AIDS orphans. UNAIDS estimates that over US $4 billion is needed to implement a comprehensive response to AIDS orphans and vulnerable children over the next two years, but much less than this amount is actually available.
As a result of this funding gap, fewer than one in ten AIDS orphans receive external support. Millions of children are growing up deprived of education, basic needs such as food, water and shelter; and are at high risk of HIV infection, discrimination, exploitation and violence in the form of forced labor, prostitution and drug trafficking. By 2010, another estimated five to ten million children will have lost at least one parent from AIDS.
Only three countries – the US, UK and Ireland have earmarks providing at least 10% of HIV/AIDS funding to orphans and vulnerable children. Yet experts believe that these promises and legislation are unfulfilled as they meander through government bureaucracy. We must hold leaders and policy makers accountable to their promises. We must advocate for more governments to follow their lead.

RESOURCES FOR ORPHANS

With adequate funding, the world can help children orphaned by AIDS to grow up healthy and safe. We can address the challenges presented by the AIDS orphans crisis through:

Support to families and communities that serve as the safety net for AIDS orphans.
Access to education, health and nutrition for orphans and children affected by AIDS.
Job training and livelihood support to give young people the skills necessary to enter the workforce and to become productive members of their community.
Social protection laws that promote and enforce inheritance and other legal rights for orphans must be in place.
Treatment for HIV positive children that is provided with special consideration for the physical, psychological, and social needs of a child living with HIV.

We need your help to speak out and spread the word about World AIDS Orphans Day. Your voice is their future.

RAISE YOUR VOICE!
Speak up for orphans. It’s easy to get involved.
Add your pictures onto the map. Lobby world leaders. Attend or host an event. Generate press coverage about the orphans crisis. Spread the word. Donate."

Below is another link from the website that contains, among other things, a toolkit with sample letters, relevant links, and other info:

http://www.worldaidsorphans.org/section/the_orphans_crisis/resources#mayors

In whatever manner, however small, that we can rally support for attention for this cause, let's do so. Let's do it for our kids! Let's do it NOW!

World AIDS Day

2008-11-30T23:31:00.004-06:00

World AIDS Day is a somber but necessary day for those of us with positive loved ones. I pray for the day that it can be renamed HIV/AIDS Eradication Day due to the discovery of a cure for HIV. However, until then, I struggle with how to commemorate the day in a manner that is appropriate for my family. In the not-so-distant past, before I had children, I typically took part in community events as a part of my job duties in the various social services/health education positions I have held. Later, when my oldest daughter, who is a teenager and is HIV-, joined the family, she was reluctant to participate in any events related to HIV/AIDS because it was a painful reminder of the manner in which the relative who was her long-term caregiver died. Being sensitive to her feelings, I didn't push her...but with my positive younger daughter, I feel it is important to try to be involved in some way. The question is...how? Most of the activities being held in our city are not family-friendly; the events were designed for adults and would be confusing and possibly even frightening to a younger child. I'd like to see an event that incorporated a celebration of life with the virus as an alternative to the memorial services/vigils; perhaps featuring artwork, drama, and/or uplifting music created by positive children/adults or by others who have been inspired by them. Maybe I'll bounce the idea off of some local youth organizations and ASOs; maybe they can collaborate next year and include such a program as part of their 2009 World AIDS Day events. At any rate, as World AIDS Day has arrived right on the heels of Thanksgiving, let's all be grateful for the advances in treatment that have allowed our precious children to lead healthier and more fulfilled lives in spite of this illness.

Inadvertant germ messanging

2008-11-24T17:07:00.001-06:00

So the whole germ discussion we had before.... Since last week, my daughter has had pinkeye. It's the viral kind, not painful kind; it just makes her eyes red. So the message of pinkeye is that if you have a "germ" (at least this one) you will be socially stigmatized and not able to go to school. You will need to spray your hands with antibacterial spray before you touch babies. (And you really should try to stay away from babies.) If people know you have pinkeye they will want to keep you at arms length. You should really just stay home in your pajamas and watch TV.... In the middle of the fall out of the dreaded pinkeye, I've been trying to bring up that there are different kinds of "germs" and that some are easy to spread and some are hard to spread. I can't help thinking that this is confusing, given that we've been talking about her having a germ in her blood, and that it just requires being careful about putting on bandaids if she gets a cut...

And another thing! The policy of the school with regard to pinkeye actually is contrary to public health principles (and social justice!). The school district requires a student with pinkeye to be "under a doctor's care" getting treatment, which implies that the child is being treated with antibiotic eyedrops, which would be the case if the conjunctivitis were bacterial. But in most cases, it is viral, in which case antibiotic eyedrops are a waste of time. In that case, you have to bring a note from the doctor saying you are not contagious. But it takes several days for the infection to go away, and in the meantime the child is missing school and being shunned from society as a whole. So the incentive is for parents to pressure doctors to give them antibiotic eyedrops so children can go back to school and everyone can go on with their lives, red eyes and all. All that might be okay, but everyone using antibiotic eyedrops when there is no reason to will cause a rise in antibiotic resistant bacteria, leading to less treatable pinkeye. Not to mention the costs to the economy for doctor visits, unnecessary eye drops, missed work, missed school, etc etc etc. Obviously there are children with pinkeye attending my child's school. That's where my child got hers. What exactly is the problem with viral pinkeye? Children can learn with red eyes can't they? But they can't learn if they are excluded from school. I need to get the American Academy of Pediatrics on this... If they came out with a policy statement on lice, surely this is just as important!

BTW, she feels fine, she just has red eyes. :)

ARVs=Brain Freeze?

2008-11-19T12:16:00.002-06:00

Academics in our home has been a very strange phenomenon. Since English is my daughter's second language and due to the fact that she did not benefit from any schooling in her home country, I try to spend time doing supplemental work with her (outside reading and math, educational computer games, etc) to enhance her learning abilities. She actually does quite well in school, but at home I have noticed that though she picks up things very quickly, when items are revisited at a later date, she has some difficulty with retention and with application of learned material. I think it is less evident in school because in the younger grades they appear to introduce a concept, master it, and move on?, but since I'm working with her one on one, I see it more easily, and I foresee it causing problems later on in her schooling as the work will progressively become more advanced. It's hard to know exactly what to attribute it to, and I've never parented a child of this age. For all I know it could be a learning disability of some sort, it could be the language barrier, it could be learning style, or it could be just the way kids are at this age. I haven't brought it up to her school for two reasons: 1) she's doing well in terms of grades, (she is an honor roll student), so it may seem silly to them that I have these concerns, and 2) unfortunately, the school district we are in is notorious for a disproportionate percentage of minority students in its special ed population, and I don't completely trust their motives (more special ed students means extra funding from the state, after all). But I do think HIV plays a role. When I am on different HIV related websites, poz adults sometimes talk about how some of the side effects from their meds are affecting them physically and cognitively; certainly this must also apply to youth despite the limited research on pediatric HIV in comparison to adult. Has anyone experienced any academic issues with their child/children, and what has helped (homeschooling? mnemonic techniques? books? tutoring? switching meds? vitamins?) Specifically, my daughter is on Sustiva and Truvada if that makes any difference.

Wondering

2008-11-13T16:27:00.000-06:00

I am waiting for my children to come home. In the meantime, I am worrying about how to approach the whole HIV virus subject with preschool age children. I was hoping I could get some advice from the parents on this blog. How do you approach the subject and how simple do you keep it for the child to understand? I would like the child to understand about universal precautions. Any advice? Thank you in advance!
Jenny

Who knows

2008-11-12T16:39:00.000-06:00

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.

The Giant Bunny

2008-11-10T11:24:00.000-06:00

Not long ago, my six year old daughter, who is positive, sat on my lap and told me a story. It went something like this:
"Once there was a giant bunny. He was so big that he reached all the way to the sky. One day he went to a place where there were lots of people. The giant bunny loved to play, so he hopped around, trying to play with the people that he saw. But some people were scared to play with him because he was so big, and they ran away from him. Other people wanted to play with him, but their friends told them not to play with him because he was big and they said he would hurt them. The bunny got sad because nobody liked him. He started to hop away, but he bumped into some houses and they broke. It was an accident, but some people got mad and started to yell mean things at the bunny. The bunny cried because it was not his fault he was so big, and he wanted the people to like him. Even though he was big, he was still just a bunny and wanted to have fun. But the people never wanted to give him a chance, so he went far away and never came back."

If the topic of the story was about anything else, I'd be focused on how proud I am that my baby girl, who is still learning the language, is able to independently create a story that's such a clear metaphor of her own life (yes, my princess is brilliant!). But I was too busy being sad. I often struggle with how to tread the fine line between the seemingly contradictory need to both shelter my daughter from the still-existing stigma of her illness and yet be "real" with her about it. On one hand, her HIV status is secondary, and possibly even tertiary, to the everyday aspects of life, and I don't see the need to be unneccesarily focused on it. However, it's always lingering subtly in the background, i.e. when she takes her meds, or when she says her prayers for her "mommy and daddy in Heaven." Generally, she is a happy, high-spirited child, and doesn't dwell on her status, but she is becoming more introspective as she gets older and hates injustice of any kind. It bothers me that life has to rob her of her innocence so early. I remember how it hurt when I first started becoming aware that I was "different" than others growing up, and that everyone didn't necessarily celebrate the difference. And even though my daughter has far more happy days than unhappy ones, as a mom it still hurts me that I can't fix all the ugly parts of her life. But I guess such is life.

The purpose of this blog

2008-11-07T07:12:00.001-06:00

We started this blog to allow families adopting and parenting children with HIV a space to discuss issues and challenges in this journey. Like all things in parenting and in life, not everyone agrees, and in some cases we just have to "agree to disagree." But what we all share is a love for our children and hopes for their futures to be full of promise and of love. Thanks for listening in and joining in on our conversations!