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. 

what's your church's elopement plan? #kidmin #stumin #familymin

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No, no, I'm not talking about people running off to get married. I'm talking about one expression of several disabilities: elopement. It would be described in lay terms as wandering, running away, escaping, or darting off. We have a couple of repeat offenders on Sunday mornings in our ministry.

Two of our most committed elopers at our church have Down syndrome, but this is a common behavior among kids with other diagnoses as well. In a survey of 800 parents of children with autism, findings indicated that about half of kids with autism wander. Additionally, children who have been adopted from hard places are also more likely to elope, especially those kids who have lived in a setting (like an orphanage or a child-led household) without much adult guidance and who might not understand the benefit of loving supervision.

Helpful note for parents: 
Sometimes it helps to use disability-ese with church leaders. Saying "my kid wanders" doesn't always communicate the amount of supervision needed. Trying saying something like this instead: "In the world of special needs, there's this word 'elopement' that means a child might try to escape from the group and not understand the dangers, and elopement is something my son does sometimes. Here are a couple of things that can help keep him safe. [Insert suggestions.] Do you have any questions?"

Below I have a list of tips for working with individuals who elope in ministry settings, but please leave a comment if you have anything else to add!
  • Talk with the parents/caregivers. If someone is eloping at church, it probably isn't the first time. What has worked in the past? What hasn't?
  • Be proactive. It's always best to avoid elopement if you can! This extends to planning space well (such as arranging the room so that no one has any reason to be near the door) and planning class activity well (so that individuals are less likely to wander). Also...
  • Pay attention, and try to figure out the cause(s). Behaviors don't just happen. If someone is eloping, odds are good that something is triggering that. Pay attention to what happens before the person tries to leave, including what other volunteers are doing, what classmates are doing, and how the individual is acting (frustrated? bored? overstimulated?). According to the research linked above, parents reported the following reasons for elopement: the child enjoys exploring (54%), heads for a favorite place (36%), escapes demands/anxieties (33%), pursues special topic (31%), and/or escapes sensory discomfort (27%). In a church setting, that means a child might elope to get to his/her parents, to explore the rest of the church, or to escape from a loud or busy class.
  • Be careful not to reward elopement. I know that sounds a little odd; I mean, why would you want to reward that? But consider this: one of our kids who elopes tends to run away, giggling and looking back with a huge grin. If it weren't so unsafe, it would be cute. (Okay, okay, it's a little cute either way!) It takes a lot of self-control not to giggle with him, but every time he sees a helper laugh at that behavior, it reinforces it. Don't reinforce a behavior that you don't want to continue. Don't act like it's a game; treat it as a serious safety matter, because it is one.
  • Plan transition times well. During our Kids LIFE classes (aka Sunday school), most preschool kids go to the playground. On special days, our elementary kids have small group time in their classes and then large group time in a bigger room. During the transitions from one place to another, I aim to position myself so that I can avoid a running situation with either of our kids who elopes. 
  • Make it more difficult to elope. In the past, we've used chimes on doors, baby gates in classes that usually wouldn't have them, and closed doors in classes that would usually have the door open. Also, we have arranged class environments so that no one in the class is by the door at any time other than pick up and drop off. Speaking of that...
  • Have a plan for pick-up and drop-off times. Classes tend to be a little more chaotic at those times, as do church hallways. Exercise extra caution and prevention in those instances, and plan activities that keep the person who elopes away from the door. If one class's teachers are leaving while new teachers are arriving for the next ministry hour, it's easy to lose a little one and assume he or she has been picked up, so have a plan to prevent that!
  • Ensure that you have enough volunteers. We know the parable of the 99 sheep that Jesus told, in which the man leaves his 99 sheep in search of the one that is missing. That is a wonderful parable and a good reminder of why we want to welcome these families, because otherwise we're sending that one sheep away from a church. However, it's not good or safe ministry practice to emulate it by leaving the rest of the class unattended while you go in search of the person who wandered off. Make sure the rest of the class will be fine with other volunteers while one pursues the wanderer (two if the individual might be in a more remote area, because it's never wise or safe practice to create a situation in which the volunteer will be alone with the child).
  • Make sure other key staff and volunteers are aware of the best ways to respond when they see someone eloping and the best ways to prevent it. This might not be any different from what you would do for any other child. Or it might involve specific tips for the child or adult in question; for example, if she is fearful of strangers, it might be best for an unknown stranger to follow the child until a known helper arrives to approach her and bring her back to class.
 And, to highlight why this is important, consider these points from the survey I mentioned earlier:
  • More than one third of children who elope are never or rarely able to communicate their name, address, or phone number verbally or by writing/typing
  • Two in three parents report their missing children had a "close call" with a traffic injury
  • Wandering was ranked among the most stressful autism spectrum disorder (ASD) behaviors by 58% of parents of elopers
  • 62% of families with children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
  • 40% of parents had suffered sleep disruption due to fear of elopement
  • Children with an ASD are eight times more likely to elope between the ages of seven and 10 than their typically-developing siblings
Please don't miss in these stats that parents of children who elope are often stressed out - not sleeping, not participating in typical activities, possibly not coming to church at all. Find ways to show them love and, if possible, give them a break. Sunday morning can be that break, as can respite care (which is a topic covered extensively by our friends at Key Ministry, 99 Balloons, and Nathaniel's Hope).

Which of the elopement tips above do you think is most useful?
Any other tips you would add?

disability & Christ: links of interest

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A Ministry for Parents at the End of Their Rope


In 1992, the senior pastor at Mclean Bible Church, Lon Solomon, and his wife Brenda were busy with the church and raising three boys. Then their daughter Jill was born with a seizure disorder that left her with irreversible brain damage. She needed constant care and supervision, and her parents began to feel physically, emotionally, and spiritually exhausted. One of their friends organized a group of caregivers to care for Jill and give her parents a break. Brenda sometimes says, "Respite gave us hope. It changed our lives." They don't know where they'd be today if they hadn't gotten it.
 Lucette
The nurse continued to speak, but I couldn’t fully understand the noises coming from her mouth. I was like a spirit no longer present with my body, floating there in the hospital room, not sure where to go or what to do. If I could have spoken, I might have said something like:

‘What do you mean Down Syndrome? That’s not us… That’s not our lives… Parenting a person with special needs… Our lives are too complicated now as they are. This just can’t be…’

When Christian Parents Should Seek Out a Christian Mental Health Professional
I had previously shared this post reflecting my opinion that Christian parents are best served by seeking mental health services from professionals who reflect excellence, regardless of their personal beliefs. Today, I’ll share a couple of significant exceptions to that rule.

I Wasn't There: The Tragedy of Adoption
I will cuddle her now and kiss her booboos now. I will tell her that she is brave and loved. I will be there as she fights the emotional trauma from her life in the orphanage. I will stand with her and be a steady presence as we tackle PTSD (post-traumatic-stress), anxiety, depression, RAD (reactive-attachment-disorder). I will be there when she doubts herself, reminding her that she can do it.  

From Empowered to Connect's FB page