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.

The Giant Bunny

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

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!