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

HIV FAQ: Do you tell anyone at your church or school?

As long as I'm running this series, I will continue to accept questions; all of the answers will be linked together at my page on HIV. So feel free to ask another question if you'd like!

Also, several people have asked if it's okay to share my posts. YES! My blog is public, so I don't share anything here that I wouldn't be okay with a stranger reading or seeing.

Now to today's questions...

How do you handle disclosure in school (if your child is in school)?

How does the school system handle children who are HIV+? Who do they disclose that information to in order to protect the privacy of the child? 

What are your required or chosen obligations in informing the school/teachers about your child's HIV status?

Let me start by saying that only two of our six children are in school. That said, all of them are in educational programs at church, so this post will address both school disclosure and church disclosure. In other words, when I talk about teachers, unless I specify otherwise, I'm talking about all kinds of teachers: school (in our case, public school), Sunday school, Sunday evening kids' programming at church, and so on.

First, what are our legal obligations? In school, church, or childcare settings, nothing. Nada. Zilch.

Because HIV is not a risk to other children and because HIV status is protected from discrimination as part of the Americans with Disabilities Act, we are not required to disclose our child's status to anyone in a school, childcare, or church setting. In fact, we're only required to disclose to medical professionals.

(The other category that must be disclose to is sexual partners, but we're not there yet, and I'll be writing an entire post in response to questions on that topic.)

As we knew we'd be moving forward toward an HIV+ adoption but before we found out about our waiting three, one of whom is HIV+, I sat down with our school's principal and school nurse at a meeting I requested. We were trying to decide how much and to whom to disclose, and we wanted to know how they would handle a situation if another parent or if a teacher or other staff member found out about our child's status and was fearful, ignorant, or confrontational about it.

The nurse had talked to the school district's head nurse and some other higher up at the health department. They said - and she agreed - that we should absolutely not disclose to anyone. While we were thankful to add their input to the research and recommendations of other medical professionals and adults with HIV, we obviously haven't followed the specific advice about disclosure offered that day by our school nurse.

That said, I agree with her to a point: If you're not sure about disclosure, then don't disclose. You can always disclose later, but you can't undisclose. Her recommendation was based on a desire to protect our child - who was only hypothetical at that point - from the hurtful stigma and ignorance and rejection that can often be the result of disclosure.

From our principal, who is quite possibly the most supportive and helpful and professional educator I have ever met, I received assurances that our child's confidentiality would be protected and that any concerned  parties would be responded to with facts about the school's commitment to both complying with the ADA and using universal precautions (that is, treating every individual as if they could be carrying a blood-borne pathogen and using precautions with any exposure to blood).

Furthermore, she pointed out that she would not legally be allowed to disclose our child's HIV status to anyone else, even if we gave her permission to do so. In the words of the NC Bar Association,

North Carolina law makes it a misdemeanor to disclose information about HIV infection. However, there are a few exceptions. First, information about your HIV status can be disclosed with your consent. Also, as discussed above, your doctor has to report your HIV infection to the State. The State can inform your spouse. 

So do we disclose in school and church environments?

Yes. Selectively.

Actually, we disclosed long before any conversations took place. A lot of people from our church already read our blog. Some of the teachers and other staff members at our school do too. Since we have shared here that one of our children is HIV+, that means we've already disclosed - in part, at least - in those environments.

More than that, though, we do disclose to teachers now and plan to in the future, at least through third or fourth grade. Given that other children are not at risk of getting HIV from our child in a school or church setting, we are comfortable in changing that decision in the future and not disclosing to every teacher (for example, not going out of our way to tell the music teacher or art teacher, and not informing substitute teachers). As our children get older and more self-sufficient, we may shift to only informing one trusted staff member at the middle school and high school, in case of emergency, and to continuing to inform our youth pastor but maybe not every single teacher/leader. With age, we'll transition more and more about the disclosure decision to our child, as we teach each of our children to advocate for themselves.

Edited to add: To clarify my paragraph above, we don't disclose to the teachers because other kids are at risk. We disclose to them because our child is at risk for discrimination because we've chosen to go public as an HIV-affected family. It is possible that other parents at our school or church might express concerns, and I like for teachers to be knowledgeable if they're ever in that position. 

Tomorrow, I'll be posting about what information we provide in writing to our child's teachers and other caregivers to educate and equip them after we disclose.

Now, a note for potential adoptive parents: This topic, and many others I'll be addressing, just reflect our own family's decisions. Now that I'm connected to a lot of other adoptive families with HIV+ children, I am realizing more and more that the majority of families are more private about this than we are. You'll find that the loudest voices online are the ones who, like us, have chosen to disclose. Please remember that our voices aren't the only ones - just the most easily accessible ones - and don't worry that you have to be as open as we are if you decide to say yes to adopting a child with HIV. Just as my friends and I represent a variety of decisions on other topics - public schooling/home schooling/private schooling, for example - we also represent a variety of decisions about disclosure.

We've chosen what we've chosen based on our child, our school and church environments, our personalities, and a whole host of other personal decisions. Other families use the same factors to make a completely different decision.

And that's totally okay.

HIV FAQ: How do we keep other kids from catching HIV?

Yesterday, I offered the opportunity for readers to anonymously ask any question they might have about raising a child who has HIV. (That offer still stands, so go to that post if you have a question you'd like me to address.) Today, I'll be answering these questions:

"How do you keep your other kids from getting HIV+? Do you ever worry about them getting hurt because of HIV?"

 "What happens if your child is bleeding?" 

 "What about sharing things that shouldn't be but sometimes are when you share a bathroom (toothbrush, razor, towels)?"

"Can HIV be spread through spilled blood/childhood accidents? Not sure if you've addressed this in a previous post..."

I won't always group questions together, but all of these relate to one another, so it made sense to address them in one post. Before I do, though, I want to say one thing: THANK YOU! We truly want to share truth about HIV with others, and your questions are helping us do that.

Thank you. 

Now, on to the questions.
First, let's talk about transmission. HIV is transmitted through blood, semen, vaginal fluids, and breastmilk.

(Side note: I'm pretty sure this marks the first uses of the words "semen" or "vaginal" on this blog.)

(Side note about the previous side note: I was wrong. I just did a search. I used them once before in a previous post about HIV.)

For starters, we can rule out breastmilk. None of my children are lactating, so that one isn't an issue.

Semen or vaginal fluids? Nope, our children don't share that either. Even if trace amounts were left behind, it wouldn't be possible for infection to occur via shared toilet seats or (ew, ew, ew) shared underwear.

(Side note: I do not condone the sharing of underwear.)

So we're left with blood.

In order for HIV to be transmitted, blood-to-blood contact is necessary, such as blood transfusions or shared needles. That's not something done among our kiddos either.

As far as childhood accidents and spilled blood go, HIV has never been transmitted in those ways. Never. We still use gloves when dealing with blood, and we're a bit more liberal with our band-aid usage now to keep all wounds covered, but? Those are just precautions. HIV hasn't ever been spread in a normal childcare, school, or household environment. It's a wimpy virus that dies very quickly once exposed to air, so that's why lists about transmission risk focus on blood transfusions and needle sharing: blood from an HIV+ person that has not been exposed to air (by being in a needle or by being in sterile tubing/bag for transmission) has to enter the bloodstream of another person for transmission to occur.

Don't want to just take my word for it? Here's a quote from the New Mexico Department of Health:

Whilst HIV may live for a short while outside of the body, HIV transmission has not been reported as a result of contact with spillages or small traces of blood, semen or other bodily fluids. This is partly because HIV dies quite quickly once exposed to the air, and also because spilled fluids would have to get into a person's bloodstream to infect them.

Other citations and HIV facts can be found in this post.

What about shared razors or toothbrushes or towels? For starters, towels pose no risk. Kids can share those with no problem. Razors and toothbrushes are off limits for sharing because blood is sometimes present due to bleeding gums or cut skin, so we do stress that... but the only cases of transmission from those were between siblings with hemophilia whose bleeding was profuse and whose HIV was uncontrolled, leading to a rare perfect storm of circumstances for transmission to occur. That hasn't happened in more than 20 years, and doctors expect that it wouldn't have happened in the absence of hemophilia. That said, sharing of razors or toothbrushes is considered a "low risk" (rather than "no risk") activity, and we treat any risk - no matter how unlikely - as serious.

But consider for a moment the setting our newest three children lived in before they came to us. The orphanage was hardly a sanitary environment. Sharing toothbrushes?

Yep, that's the communal bucket of toothbrushes. No one had their own, and the orphanage had more children than toothbrushes; in other words, a whole lot of toothbrush sharing occurred. 

Our child was the only one there with HIV.

None of the other children contracted it.

So while we certainly take precautions in our own home, we know our child has been in far less sanitary conditions without transmitting HIV. In fact, there's no record of HIV ever being shared among children in any orphanage setting, which to me is even more compelling than the fact that HIV has never been transmitted in normal home, childcare, or school environments.

Which leads me to the last question: Do we worry about our other children being at risk because one child has HIV?

No.

Our child with HIV is at a greater risk than our other five. Why? The other five could bring home all sorts of germs and ick, and while their bodies can fight viruses and bacteria, their sibling's body can't. Even so, our child is growing stronger and healthier each day with the daily medication regimen we adhere to, which means immune system function is improving as the measurable amount of HIV present in the blood is diminishing.

(Side note: that also makes the risk of transmission much lower, as the presence of HIV in my child becomes less and less.)

As we say at medication time twice a day, "This makes you strong and healthy."

And it does.

Praise Jesus for modern medicine!

what would YOU like to know about raising a child who is HIV+?

I'll be writing a new series of posts about HIV now that we're home and settled into our groove.

(If you're a new-ish reader, go to the navigation bar above and pick "HIV" under "diagnoses" for our backstory on this.)

For now, though, I'd like to provide the opportunity for anyone to ask a question anonymously. I'll do my best to answer all the questions in future posts! Truly, HIV isn't a huge looming boogeyman in our lives... and I'd love the opportunity to make it a bit more normalized by answering your questions, because I don't want ignorance to force kids like mine to live with stigma or to condemn orphans with HIV to lives without a family.