HIV FAQ: What do you tell your child's teachers or caregivers?

Yesterday, I answered the first part of this question, about what our legal (aka required) and personal (aka chosen) obligations are for disclosing our child's HIV status to teachers and caregivers. I mentioned that I have created a fact sheet for anyone who cares for our child with HIV, to train them and put them at ease.

Once again, I want to stress that this is our choice, and we are neither legally nor ethically bound to disclose our child's status to anyone other than medical professionals. Many families with HIV+ children opt not to share the diagnosis with anyone, including teachers and caregivers, because disclosing a child's status can invite stigma and painful rejection,

As I've shared before, though, we've decided that disclosure is the best path for our family and our children. In making that decision, we have also chosen to disclose specifically to our child's teachers. Below is the information we include on the fact sheet we provide following an in-person conversation:

As I shared with you in conversation, our child has HIV. What does this mean for you? Simply put, you just need to treat him/her just as you would any other child in your care, PLUS a few more considerations:

Privacy
Life
Universal precautions
Sickness

Privacy: HIV isn't something we're ashamed of. That said, many people are not knowledgeable about HIV, and ignorance can result in fear, rejection, bullying, and other stigmatizing behaviors. As such, it's important for you to know that it's against the law to disclose another person's HIV+ status. We are trusting you with this information to care for our child, but we ask that you help us in protecting his/her privacy. (Note: I'm even using "him/her" instead of "him" or "her," as an extra layer of privacy protection, choosing not to even disclose our HIV+ child's gender in this information, in case someone else comes across it.) We are not legally required to share our child's status with you, so please understand the trust we are placing in you by choosing to share his/her diagnosis.

Life: Please know that he/she is a CHILD, first and foremost. HIV does not define him/her. His/her life is the same as any other child, except he/she takes medicine every 12 hours. For us, we haven't experienced any major side effects. These medications are currently keeping his/her viral load - that is, the measurement of HIV in his/her blood - at nearly undetectable levels. That means that he/she can grow, learn, develop, and live just like any other kid, with a similar expected lifespan as long as he/she stays on this life-saving treatment. When he/she grows up, he/she can get married and have biological children, even if his/her spouse is not HIV+. Medical science has come a long way!

Universal precautions: As a caregiver of children, universal precautions are something that you should do anyway. In other words, you should universally (for every child, in every circumstance) act as if a blood borne pathogen - like HIV - is present. We are not legally required to share this information with you, so you could have had contact in the past with children with HIV without ever knowing it. If you ever need to encounter blood, use a barrier; disposable gloves are the ideal choice. HIV is only transmitted through sexual contact; mother-to-child transmission via pregnancy, birth, or breastfeeding; and blood-to-blood contact. (In other words, even if your skin or someone else's skin touched our child's blood, HIV couldn't be transmitted because skin is an effective barrier.) What about cuts and scabs? HIV has never been transmitted through spilled blood or scraped knees or bloody noses. As scary as it sounds, HIV is a really wimpy virus that can't live outside of the body. So unless you are conducting some sort of crazy activity that involves needle sticks or blood transfusions, then other kids won't be in danger because of the presence of our child. (And if you plan anything crazy like that, let us know, because we'll have some concerns about that for more reasons than just HIV...) Other blood-borne illnesses are not as fragile as HIV, though, and it is always possible that you could know a child with another blood-borne illness whose parents choose not to disclose, so always, always, always exercise caution when you encounter anyone else's blood.

Sickness: The biggest risk in being around our child is that you or others with you (in the same class, for example) would get him/her sick. Even with the daily medication regimen, our child still has a much weaker immune system than other kids. Teachers, please enforce whatever well-child policies you have in place (such as not admitting children who are visibly sick or known to have had a fever in the previous 24 hours). Every illness hits our child harder and keeps him/her sick longer than other kids, and some ailments that are mild for other kids could be life-threatening for ours.

Please, as you care for our child just like any other child PLUS a few more considerations, let us know if we can answer any questions for you!

For more reading:
our blog: /www.dinglefest.com//p/hiv.html
the CDC: http://www.cdc.gov/hiv/basics/
The NIH: http://www.niaid.nih.gov/topics/hivaids