HIV FAQ: What if friends or family don't understand?

Today's questions are some of the most common ones. Also, the most heartbreaking. 

What has been the hardest part of adopting a child with HIV?

Do you usually share their status with parents of your child's friends? How is it received, if yes?

Have you lost friends because of HIV?

Thank you for sharing so much information with everything. This is SO helpful! Has there been anyone who hasn't been open to knowing the truth about HIV? If so, how have you handled that?

I'd love to say all of our friends and family members have been willing to learn and have loved us well by asking questions before passing judgment.

But I'd be lying if I said that.

Most people have been amazing. We have gained more friends than we have lost, as people who I didn't even know were following our story came up to us with words of encouragement at church or school.

As I said in my post about church and school, we've already partially disclosed in those areas because people in both settings read our blog. I don't doubt that people talk about our choices: to adopt a child with HIV, to be public about it, to turn the blog over to Q&A for a couple weeks. I'm sure a lot of that talk is positive. I'm sure some of it isn't.

I'm fine with that.

It wouldn't help anything if I wasn't, anyway. I can't control what others say or where they say it or how they feel about it. I can only choose those things for myself.

As far as who we've told the specifics of which child is HIV+, we've limited that info. However, I think most people could guess if they tried. Or they could just ask any of the kids, who would probably answer without hesitation because we haven't taught them that it needs to be a secret.

(Let's remember that their ages are two, almost five, and seven... if we told them it was a secret, they'd probably be more inclined to share. Plus the nuances of good secrets and bad secrets are hard to understand at this age.)

Some people haven't said anything to us about it. I'm cool with that.

Others have told us that they trust us and that's enough for them. They've said that they know we wouldn't put our kids or their kids in danger. While they've thanked us for sharing details about HIV, they've said more info wasn't necessary for them to be comfortable with our child.

A handful of friends have approached us with humility to admit their ignorance in this area and to ask some questions to make sure their kids aren't in any danger. I love that. Please, please, please keep doing that if you're one of those friends who would appreciate a little more knowledge and assurance of safety. I get it; I'm a mom too. Knowing that your children aren't at risk because of mine? That's important.

And a few loved ones with whom we have deep and precious history? They haven't been okay with it. The reactions of two families in particular have wounded us beyond anything we could have prepared for.

And now the screen is all blurry again. What's that wet stuff in my eyes?

We have grieved. Hard.

But? Just as I can't control what people say, I can't decide how they feel about HIV. I can inform. I can educate. I can advocate.

Beyond that, I can't do anything else. I can't make them exchange stigma for truth. I can't make them see that HIV doesn't define my truly awesome kid. I can't force them to allow our children to play together like before.

I do what I can, even as my heart breaks over what I can't.

For those who are fellow Christians, I do know that the Holy Spirit can convict them of ways they're responding in fear rather than love. I'm praying for redemption and repentance and reconciliation. I'm hoping time will soften their hearts while God protects mine from bitterness toward them. I praying for Joel 2:25, that the years the locusts are eating will be restored one day in a couple specific relationships.

Just as Hananiah, Azariah, and Mishael (better known by the names they were given in captivity: Shadrach, Meshach, and Abednego) testified before the fiery furnace, we know our God is able to change these circumstances and we know He is still God even if He chooses to act in a different way.

(Lest you think we're some sort of Christian rockstars, it still hurts. Others are saying no to us because we said yes to Him. It stings. But I would never, ever, ever, ever trade the two. We are convinced that it is far better to say yes to what God has called us to do and get rejected by friends because of it than to receive a yes from friends while we reject Him.)

We're not responsible for changing the world.

That's God's job.

We're just responsible for being faithful to say yes to follow where He leads us.

HIV FAQs: Why does our pediatrician ask if our child has been around someone with HIV?

This next question required a bit of research on my part and a really helpful conversation with our pediatrician:

At my child's last well check, I was filling out all the lists of questions and one was "Has your child been exposed to anyone with HIV?" I paused for a moment because we go to church with you and I am pretty sure two of my kids share classes with your newest kids. So I know there is a large chance one of my kids is "exposed." I have read your posts about the rest of you family being safe, exposure is not dangerous and believe you. So I guess my question is why is the pediatrician using this language? Is it ignorance on their part? If I said yes, my child is around someone with HIV, would the doctor treat my child differently?

Nope, not ignorance. (That was my first guess, and I was wrong.) They're actually asking a completely different question than you think they're asking.

The American Academy of Pediatrics is concerned - and rightly so - about an increase in TB cases in the US and the risk that poses to children. Therefore, every year your pediatrician is supposed to have you answer some screening questions to determine if your child might have been exposed to TB, in which case a TB skin test would be placed to make sure your child is TB free.

(TB infection can be active - that is, symptomatic - or latent - that is, dormant. So if your child was exposed to TB, like I was at Zoe's hospital in Taiwan, he or she might have no symptoms yet but might still have a positive TB skin test, like I did when we got our physicals done to be approved for our Ugandan adoption.)

People with HIV are at a much, much higher risk of having TB and at a much, much higher risk of spreading TB if they have it. That's because they're probably not going to have a latent infection for long; given immune system deficiencies, TB is much more likely to become active, especially if HIV is unchecked and untreated.

If you say yes to the question, your doc will ask some follow-up questions, like "Do you know if the person with HIV is being treated for HIV?" and "Does he/she seem visibly ill, particularly with a productive cough?" It's a subjective decision, but based on your answers, you and your pediatrician might decide to do a TB skin test, just to be safe.

That's the only thing that would be different in how you or your child was treated.

For us, because our pediatrician knows our child's HIV treatment plan and health status, we just have TB tests each year for the child who is HIV+. There is no medical reason, unless one of those tests comes back positive, for any of the other five to get TB tests.

(In other words, if our kids don't need TB testing, yours don't either.)

All that to say, your doctor isn't really concerned about whether or not your child is around someone with HIV. She's concerned about whether or not your child might be around someone who might have undiagnosed or untreated TB.

But if he asked, "Has your child been around someone who might have undiagnosed or untreated TB?," you'd probably say, "How would I know that?"

Then the doctor would say, "Well, have you been around anyone in prison or recently incarcerated? anyone with HIV? anyone who has recently been out of the country?"

To save y'all time, they just skip the real question and ask the risk questions instead.

(Here's the full list of TB screening questions from the AAP, if you're interested.)

HIV FAQ: Would I want a sign on my child's classroom asking people to keep sick kids home?

This will be a brief post (famous last words? brevity isn't my strong suit... so we'll see), but I wanted to address this question in a post of its own:

After reading the first two posts, now I'm curious how you would feel about a teacher posting a sign on their door that said something to the effect of "A member of this class is Immuno-compromised (right term/spelling?) please follow our well-child policy as your child's cold could mean their hospitalization."

I asked Lee to chime in, and his response sums up my first reaction pretty well: "I don't know that I'd be opposed to it, but I wouldn't ask for one either."

For now, our child with HIV is doing well. We know the blood tests show that immune function is still very compromised for that kiddo (and, yep, "immuno-compromised" is that right term and spelling!), but when we've gotten hit with childhood sicknesses, our child with HIV hasn't been impacted any more than any other child in our family. During Christmas break, Jocelyn had strep throat, and no one else got it. We've had two cold viruses since coming home, and neither has been more of a problem for our child with HIV than our other five.

(Actually, Zoe - because of her weak core, difficulty having a productive cough, and physical limitations that mean she spends less time upright than the rest of the kids - is the one who is hit hardest each time.)

While objective lab results indicate that our one with HIV is at a higher risk of complications and hospitalization than the rest and while our pediatrician has said she'll order chest x-rays far more quickly for that child than any of our others (that is, she'll be more concerned about the risk of pneumonia developing for that one), it hasn't been the reality so far. While in Uganda, that precious one did have a suspected case of typhoid, but HIV was running rampant at that point instead of being managed with medication like it is now.

To me, this is different from my good friend, whose son has a life-threatening allergy to milk; in his case, it's makes good sense to ask that his classmates - including our daughter Zoe - not bring milk in their sippy cups because it could require a call to 911 for him. In other classes, no child is at risk from a milk spill, so it doesn't make sense for a universal policy to be implemented rather than a individualized class-specific one.

For our child, though, all kids can benefit from the same policy that would protect him/her.

So would we want a sign to ask parents to consider our child's health before they drop off a sick one in the same class? No.

(And it's not just because such an action would effectively identify which of our children is HIV+, a detail which we are only disclosing to close friends and family.)

I would rather see all parents exercise common sense in keeping kids home if they're sick.

I would rather see all childcare and school environments - including church - firmly enforce good health guidelines for the benefit of all children.

I would rather see all kids benefit, instead of just mine.

another diagnosis: fetal alcohol syndrome disorder {plus info on the #preventFASD campaign & upcoming FREE webinars}

I'm taking a break from my HIV questions series to address another common question in adoption: what about fetal alcohol syndrome disorders?

I'll be honest: this was the special need area that scared me the most. We were not open to adopting a child with known prenatal exposure to alcohol or other substances.

But when we were well into the adoption process for one of our children, we received more detailed medical information, and there it was: a note that significant alcohol exposure and possible drug exposure had occurred while our little one was in her first mother's womb.

We were committed.

We were already in love.

But?

We were also scared.

Technically, given that she has another neurological disorder, our doctors haven't seen it necessary to add "fetal alcohol syndrome disorder" (or FASD) to her list of diagnoses. We're okay with that for now.

Just as ugly stigma often accompanies HIV, we knew the same was true for FASD. That's why we haven't gone public with this diagnosis before now.

But a month ago, I was invited to be part of the blogging team for a series of upcoming FREE webinars about FASD.

For us, FASD hasn't been the scary boogeyman we thought it was when we ruled it out as a special needs adoption area we'd consider. As we firmly believe that other adoptive parents need to be fully informed in considering all special needs areas, I definitely recommend these. If you're considering getting pregnant or work with a population in which addiction or pregnancy (or both) are a reality - like in social work, crisis pregnancy centers, counseling, and so on - this can be helpful to you too.

(And did I mention they're FREE?)

I'm already all registered. You can register here.

(Also, continuing ed credits are available and described in that link too, so check that out if you're an educator, psychologist, addiction professional, or social worker.)

While I'm primarily interested in this information from the standpoint of a parent for whom FASD is already a reality in our family's smorgasbord of diagnoses, an aim of this informational campaign is to prevent FASD. Because it - like HIV and many other special needs - is preventable through effective education and prenatal care.

So join us in the webinars, and feel free to come back here the day after each one for my recap posts on February 14, February 21, and February 28.

Because no child ever needs to have a fetal alcohol syndrome disorder.
And no child ever needs to become an orphan because they already have a fetal alcohol syndrome disorder.

Knowledge is power.

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