HIV FAQ: What about when your child is old enough for dating and sex?

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Oh, goodness. This is a topic I think about a lot, but I'm nearly breaking out in hives at the thought of blogging about it, because (a) SEX! and (b) MY CHILDREN ARE ALL AGE SEVEN AND YOUNGER, FOR THE LOVE!

But these questions are totally valid and might be helpful to some readers, so here goes...
This is in the way future, but how will you handle discussions about sex? What will be the same and what will be different?  
What do you plan to teach your child about dating relationships? Like, when should they disclose? Up front or after some time?
How will you address HIV as your child grows and possibly becomes sexually active? That can also be an age of children rebelling against parental advice. My child is HIV+, but she is an adult. I know you know her story: nogoingback-thereisonlyforward.blogspot.com Please feel free to share her blog with your readers. Now going into our third year living with HIV, we barely think of it after the horror of our first reaction to hearing that diagnosis. Life is just normal now.  
How do you educate the HIV+ child about protecting others from infection? (ie informing a school nurse or friend's parent if they skin their knee and need bandaging)  
First, to answer that last question, HIV isn't transmitted via skinned knees, so you might want to read this post: How do we keep other kids from catching HIV? But I included the question because issues of dating and sex are all about protecting others from infection.

Honestly, I can't answer most of these questions. Not because I haven't thought about it, because I have. OH, HAVE I! But I know from friends further along in this parenting journey that "the talk" with each child is different, depending on age, personality, and maturity.

When it comes to the stage in relationship that disclosure should happen, that's not a decision we'll make for our child. We'll talk about it, but that's a personal decision and not one Mom or Dad can make.

As with any parenting stage, we'll draw from resources available to us, including the AMAZING folks we have in Duke's pediatric infectious disease team. One is a social worker whose job includes helping us navigate these challenging topics. I expect that Rachel and I will have many conversations about sex and HIV in the future.

Finally, I'm optimistic that more and more medical advances will be made before our child is ready to be sexually active. That's the biggest reason why I can't answer how we'll talk about it then, because I simply don't know what the facts will be then. Already in the six months since we've been home from Uganda, new advances include:

All of those advancements were reported in 2014. We are hopeful that this trend will continue so that, perhaps, our dating and sex talks with our child who has HIV will be no different because of how far modern medicine has brought us by then. 

HIV FAQ: How do we explain HIV to our child who is positive and our other children?

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Onward...
Is your child aware they are HIV+?
How do you approach the topic of HIV with your child, especially as they get older?
I am not sure how old your child with HIV is but we are waiting to go to court to adopt [a child who is 15]. We have not talked to her yet about her illness and we are worried about that conversation. How she feels about it? Is she scared? Does she want to talk about it at all!! How did you do this? 
How do you plan to equip your positive child to face the world unashamed?  
Yes, my child is aware, as much as he/she can be at this age.

In Uganda, HIV was already a familiar term. Whenever we went to the doctor there, it was explicitly called "the HIV clinic" there. Our kids knew that HIV was the reason others in their family and community had died.

Did they understand what HIV was? No, not really. But no kid really can.

Early on, our biggest priority was explaining that the medication our child takes daily would lead to life. Our kids had the impression that HIV = death so we had to re-write that story for them to dispel fear.

As far as other conversations go, all six of our children are 7 and younger, so we talk about how one has booboos on the brain (cerebral palsy) that she needs therapies and other helps for and another has booboos in the blood that require daily medicine. In Uganda, HIV was talked about openly, so they had been exposed to the term, and the head of infectious disease at Duke (where we go) recommends talking about HIV from an early age and adding more details over time. For now, we talk about how the medicine keeps the booboos from making our child feel sick, and the booboos can't make anyone else sick unless they share blood or private parts.

When it comes to helping our child live unashamed, that's part of why we chose to disclose about HIV instead of keeping it a secret. I feel like it's hard - but not impossible - to tell a child, "this is nothing to be ashamed of, but don't dare tell anyone."

More than that, though, we teach all of our children that differences are important. Differences - in health or ability or appearance or anything else - make the world richer, and different. does. not. mean. less than. 

Finally, we are clear that HIV does not define us. Our child is SO MUCH MORE than HIV, and that's a lesson we'll be teaching and re-teaching all through our parenting journey.

And tomorrow? Sex and dating and HIV... oh my!

HIV FAQ: Why do you disclose that your child is HIV+?

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Before I dive into this round of questions, let me be clear that disclosure is an personal family decision. I'll answer these questions for us, but other families I know and love have chosen a different way. 
We are adopting a child that has Hepatitis B and there are some similarities between HepB and HIV. The biggest piece of advice we've been given by doctors and other HepB parents is to not disclose our child's condition with others in our day-to-day lives (excluding immediate family). This has been a struggle because we are usually such an open book and our friends/family all know we are doing a special-need adoption and we are repeatedly asked what the special need is. I'm just curious what made you and your husband decide to share this? Not condemning your choice at all! We are not at all ashamed or embarrassed by our daughter's illness, but we are also passionate about protecting her privacy so she does not suffer discrimination or prejudice because we decided to make it public. Can you explain your reasoning for choosing otherwise? Thanks and God bless!!!
From a family adopting a positive child: We have only disclosed to our family because we feel it is her story to tell. We don't want to make that decision for her. Did you disclose? How was it received? thank you for your wisdom!!! 
The privacy vs. advocacy dilemma is a hard one for any parenting topic: how do we help make the world a safe place for our children to live unashamed while respecting their privacy to share their stories when and where and to what extent they decide?

I don't think there's one universally right answer, except PROCEED WITH CAUTION.

 For us, that means only publicly sharing that one of our children is HIV+. A few close friends know, but it's not common knowledge beyond that. Most people who adopt a positive child, though, don't have the option w did of only partially disclosing. It was only because we adopted three siblings at once, with only one having HIV (which, side note, fits the stats pretty well - for a woman with untreated HIV, there's a 25-30% chance that she'll pass HIV on to her child in pregnancy), and I'm not sure what we would have done about disclosure had we only been adopting one positive child.

As far as medical professionals go, we've gotten different advice from different nurses, doctors, and specialists. To me, what it comes down to is this: disclosure isn't a medical decision; it's a parenting decision. When the medical professionals we work with for our children's health or for my health offer research-driven, medically-proven direction, we follow it. When they offer opinions about how my husband and I ought to parent our children, we consider their advice but certainly don't feel bound to it in the same way we treat their dosing instructions for prescriptions.

For us, we've seen three great benefits to disclosure (once again, for OUR family, whereas I know many non-disclosing families who could offer a similar list of benefits they've observed from NOT disclosing):
  1. We are able to educate others, in hopes that the world might be a little less ignorant once our child is gaining independence. We have experienced rejection, and some of those who rejected us and our child have changed their minds and hearts since. (Oh, and if you only knew the rejoicing when we found out!) That's huge, y'all. Furthermore, we have dozens upon dozens of other friends who didn't reject us but instead came to us with questions and concerns so they could be comfortable, plus two friends who have begun the adoption process planning to add an HIV+ child to their family because they've seen how it works for us. Once again, HUGE. 
  2. We haven't shouldered our children with secrecy. I can't share all the specifics of how we know this directly and deeply, but our experience and research tells us that secrecy usually shrouds unpleasant and even criminal situations, such as abuse or untreated addictions. Given our past observations - professionally and personally - of secrecy in childhood, we didn't personally feel comfortable encouraging secrecy. Also? Our kids are oversharers (hmm, I wonder where they get that from...) and young, so the concept of privacy can be hard to grasp at their age, whereas it would be perfectly appropriate for other ages. For now with their ages and personalities, "don't talk about HIV" would be heard as "TELL EVERYONE YOU KNOW ABOUT HIV!" (Side note: for us, not telling our children about HIV wasn't an option, because the topic had already been discussed in detail with our newest three, who in turn talked about it in detail to our first three, so while some parents can just say, "Little Johnny takes medicine," without explaining why, that wasn't an available choice for us.)
  3. We have shielded our child from feeling rejection from someone who doesn't know and then finds out and then doesn't let their child play with ours anymore. Sadly, when that happened in one friendship, I couldn't shield Jocelyn and Robbie from asking why we didn't play with _________ anymore, but I also didn't tell them the reason out of hope of restoring that relationship in time. For our newest three, we didn't want them to start to build an attachment with someone new only to have that stripped away like so many previous attachments in their tender lives.
I've written about disclosure and our decisions about it before, so I'll just end by sharing those links to three previous posts and one Today show article in which our family was featured, all of which address this topic in depth:

I know I've said this already, but it's worth mentioning again: This is the RIGHT decision for OUR family, whereas non-disclosure is the right choice for others. Please don't feel like this is the only valid path for those of us parenting children with HIV or other blood-borne pathogens. It's like breastfeeding vs. formula, cloth diapers vs. disposable, and so on... to each his or her own.

HIV FAQ: How does your child's life compare to other kids? #medicalcare #ARVs #dailylife

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I bet y'all thought I had forgotten about this series of posts, huh? Nope. Now back to it...
What is the life expectancy for a child with HIV?
How often does your child go to the doctor? How many medications is your child on? Will they be on the same medications/amounts for the rest of their lives or will the types of medicines and dosages change as they grow and change?
Are you going broke on the cost of meds? 
What is the extent of medical care that is involved in adopting a child with HIV?
What does daily life look like? 

Our lives are pretty normal. As much as this series might make it seem, HIV really isn't a big part of who we are as a family.

Yes, our child takes an ARV (anti retro-viral) regimen of three drugs, two twice a day and one once a day. I know other kids who only have meds once a day, and that might be the eventual reality for us, but it's every 12 hours for us: 7:30am and 7:30pm. In case we're out late, we keep one evening dose in a bottle in the van. For the medication to work well and for our child not to develop a resistance to one of the drugs, we have to stick to the clock well. The importance of that was driven home by a recent study that kids with HIV are more likely to develop drug resistances than adults with HIV; that resistance is then life-long and limits the treatment options into adulthood.

Side note: let's all thank God for my husband, who is the responsible member of our marriage and the designated family medication manager.

 Some of the specific medications and doses will change with age and with weight, and we're hopeful that advancements in modern medicine might offer even better options in the future. For now, we see our pediatric infectious disease team at Duke every 4 months, but eventually it will be every 6 months.

Truly, they are a delightful bunch, and we love seeing them each time. 

 As for the cost, let's first take a step back to talk about insurance coverage for adopted children. When you adopt a child, it is like giving birth, as far as traditional insurance companies in the USA are concerned. In other words, pre-existing conditions don't exist.

(Side note: The one major exception to this is MediShare, which presents itself as a Christian alternative to medical insurance in which members share medical costs. MediShare, by vote of their membership, does NOT cover pre-existing conditions for children who are adopted, while all secular insurance plans do. I could write a whole 'nother post about my feelings on that, but maybe another time...)

In other words, the cost has to do with what the cost of any other prescription meds would be under your family's insurance plan. Assistance programs are available through each state and through major pharmaceutical companies, but we are a-okay with just our insurance. For us, we have a high deductible plan in which prescription medications and most other medical costs are covered 100% after the deductible is met, and given my medical costs alone for rheumatoid arthritis drugs, our family meets that deductible every year. So while our monthly premiums increased a bit with the addition of three more dependents when we adopted our Ugandan darlings, our medical costs remained unchanged otherwise.

And life expectancy? HIV+ individuals being treated with ARVs live nearly as long as people who don't have HIV, with a life expectancy of 70+. Something will eventually end our child's life, but it won't be HIV or AIDS.

In short, staying on meds makes for a pretty normal life, despite HIV.

speaking love to her, in the language of flat twists

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When I blogged about Patience's yarn twists, she didn't yet have enough hair for any other style. She barely had enough, as it was, to anchor the yarn.

Extensions have never been our end goal for her, though. On Facebook back in April (side note: it's June? how'd that happen?!?), I shared this:


She's been rocking a short 'do ever since.

And I'm not ashamed to admit that I shed a few tears when a friend from church brought this to me the next week. 

Yep, that's my fridge: a little Patu in a church craft frame, a little Lupita collage, and some dinos and a fish to hold it all up.

One morning shortly after we removed the yarn, she looked at herself in the mirror, paused, and then proclaimed, "Mama, I look fabulous."

And she does.


Thanks again to the power of youTube (video at the end), I decided to try some flat twists with their own hair, sans yarn. Flat twists are kind of like cornrows, with the main difference that the hair is twisted rather than braided. 

I attempted some cornrows the other day, and let's just let the lack of post or pictures speak for itself.

Yeah. Mama needs some more practice on that. 

After that, Patience wasn't interested in being my guinea pig, so this time I started with Patu. One twist in on her sister, I heard, "Mama, will you do mine next?" She loves her TWA - that's "teeny weeny afro" in black hair lingo - so she just wanted a couple flat twists in the front.


The butterfly barrettes aren't a must as the twists stay in on their own, but she likes the pop of color.


As I shared last time, hair isn't just hair for Patience. 

Really, it's not for any black woman, but that's a whole 'nother post. While this white mama can't fully understand all those ins and outs, I trust my black friends and take their word for something I might never fully comprehend.


But as the daughter of a hairdresser - not me, her first mother - she learned that part of a mama's love was hair time. But me? I'm super white, if you haven't noticed. So committing to her meant committing to learning a whole new hair language.


Because? It's her love language.


The style on Patu is a little more rough, as I started with her first and as her soft looser curls don't lend themselves to twisting as much as Patience's tight coarser spirals do. 


And? I need some more work on parts, especially in her hair... but grace, y'all. Because have I mentioned that I'm white and I'm learning?


Oh my gracious! I could just eat her up with a spoon.


As I learn, sometimes I have to borrow some confidence from this lovely lady:


Because she's growing into an amazing young lady with plenty of confidence to spare. As she told me tonight as I was getting started on her hair, "Don't worry, Mommy. You've got this."

LOVE.

~+~
As promised, here's the tutorial I used to learn the technique.