I will spew you out of my mouth

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

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

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

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?

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

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

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.