HIV Children and Orphans are Defacto Test Subjects

Children with HIV are increasingly finding that their status is that of involuntary research subjects, not victims. In December 2004, for example, the journal Nature Medicine reported that since the early 1990s, HIV-positive orphans have been the subjects of “dozens of national clinical trials run by researchers at Columbia University Medical Center and other [New York City] area hospitals.” Mammoth pharmaceutical corporations such as GlaxoSmithKline, the manufacturer of zidovudine, have sponsored the testing of antiretroviral and other pharmaceuticals on scores of HIV-infected orphans housed in New York City’s Incarnation Children’s Center (ICC). This institution for the HIV-infected is run by Catholic Charities in Washington Heights…

Some of the candidate AIDS medications are being tested to determine their toxicity. Children as young as four were given cocktails of up to seven potent medications, although physicians are normally reluctant to give young children even approved powerful medications. Little if any benefit accrued to the infants from these risky exposures, because although some were HIV-positive, they were too young to have developed AIDS. One study is of “Stavudine…Alone or in Combination with Didanosine,” a combination that has killed adult women. An experimental vaccine administered to children as young as twelve months utilizes “live chicken pox virus,” even though it can trigger the disease itself. A study titled “HIV Levels in Cerebrospinal Fluid” required that infants undergo a spinal tap, a risky, invasive, and painful procedure. There was even a study on HIV-negative children that used an experimental HIV vaccine. By law, such a nontherapeutic study on healthy children can convey only minimal risk, but the vaccine’s risks are unknown.

Also, some of the experiments did not involve HIV therapeutics: One drug trial tested a herpes medication “for tolerance, safety and pharmacokinetic” information; another investigated reactions to a doubled dose of measles vaccine—in six-month-old infants.

For its part, Columbia University released a statement denying that the drugs’ side effects were serious enough to warrant discontinuing treatment. However, this should have been the parents’ call, not the university’s or the ICC’s. But guardians and parents who adopted HIV-infected children have found the ICC, ACS, and researchers arrayed against them when they have tried to take children off medications they found to be harmful.

In explaining her take on this struggle, Dr. Painter has said, “We’re having an increase in referrals over the last years to deal with medication adherence. There are a fair number of children whose HIV illness may be well controlled but whose families are experiencing difficulty complying with the child’s medication regimen.” By “referrals,” Painter means children who are torn from parents and returned to the various agencies when these parents and guardians balk at dispensing the investigational drugs.

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington

A Father’s Tattoos are Love Letters to his Children

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Daddy hums to Marvin, but he couldn’t carry a tune if it came in a box. He’s wearing a Lakers jersey and no shirt underneath, revealing tattoos all over his arms. One of my baby photos smiles back at me, permanently etched on his arm with Something to live for, something to die for written beneath it. Seven and Sekani are on his other arm with the same words beneath them. Love letters in the simplest form.

The Hate U Give by Angie Thomas

Happy Father’s Day!

Book Review: Hometown Alaska

During my youth I often indulged in daydreams about moving to some lovely little town in the middle of nowhere, filled with odd-personalities, tough characters and unending opportunities to indulge in wilderness exploration while building survival skills. These little fantasies of mine were always filled with a rich social life woven from solid relationships with good, trustworthy people.

What can I say? I was young.

Amazingly enough, Heather Lende accomplished my youthful fantasies. I honestly had to check the book a few times, just to make sure I hadn’t accidentally picked up a novel by mistake – a novel that just happened to perfectly reflect those wistful somedays that filled my head back when my back didn’t creak and my muscles didn’t ache after yet-another-day of to-many-hours hunched over a desk.

Side note: getting old is a dreadful experience.

There’s nothing fictional about If You Lived Here, I’d Know Your Name; everything in the book is 100% biographical. Ms. Lende achieved the very thing I’d resigned myself to accepting as impossible. She lives in the Alaskan wilderness, raises children in a small town, and has learned to rely on sort of basic life-skills most Americans have lost to industry and urbanization. Even the quirky personalities of her neighbors are described in lovely detail:

There’s an artist who lives with his wife, a weaver, in a fanciful cabin overlooking Rainbow Glacier. He keeps a dead temple pit viper in a big jar filled with vodka and takes sips of the “snake juice” every now and then to ward off illness. He’ll offer you some if you stop by.

I was amazed.

I couldn’t put the book down.

Here’s what happened: She and her husband moved to Haines, Alaska and built a home – both literally and figuratively. Eventually, Ms. Lende’s husband acquired a local business and established a career as an entrepreneur, while she pursued a career as the obituary writer for the local newspaper. While this sounds like an odd career, she describes it beautifully:

Being an obituary writer means I think a lot about loss, but more about love. Writing the obituaries of so many people I’ve known makes me acutely aware of death, but in a good way, the way Emily Dickinson meant when she wrote, “That it will never come again / Is what makes life so sweet.” My job helps me appreciate cookouts on clear summer evenings down on the beach, where friends lounge on driftwood seats and we eat salmon and salads by the fire while our children play a game of baseball that lasts until the sun finally sets behind the mountains, close to eleven o’clock…Most of all, though, writing about the dead helps me celebrate the living—my neighbors, friends, husband, and five children—and this place, which some would say is on the edge of nowhere, but for me is the center of everywhere

Throughout the book, Ms. Lende’s deep understanding and knowledge of this tiny little town comes through in colorful detail.

Being both small and remote, it’s the kind of place where teenagers are almost required to complain about a lack of adventure and activity. Yet, this book is filled with events that range from amazingly exciting to terribly sad. There is nothing easy about life in Haines, Alaska; but there’s a lot to be gained from living there.

(sigh)

I am so very envious.

If You Lived Here, I’d Know Your Name: News from Small-Town Alaska by Heather Lende

Magic Labyrinth and Pizza

Last night I spent the evening at a board game cafe. A 6-year-old family member and I had a wonderful time playing board games and eating pizza.

On the way home I realized we’d devoted 2+ hours to old-fashioned gaming in a place that does not have televisions or computers. We spent the entire time surrounded by people who were also talking, interacting and playing board games. No one was working on a laptop or staring at a cell phone. I didn’t even bother to check my phone the entire time.

It was a much-needed change for both of us. This may turn into a regular activity!

As for the games…

We played a handful of different family friendly games, but the clear winner was this:

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It’s a rather ingenious game that uses a multi-layer board and magnetic game pieces to create an ever-changing labyrinth beneath the game board. The objective is to be the first to reach a pre-designated and randomly selected spot on the board. The challenge is in getting the game piece across the board without losing the metal ball magnetically attached to the bottom (located on the underside of the board) by knocking it up against a wall of the labyrinth. Every time the ball falls off, it rolls out to a corner (like in a pool game) and the piece goes back to the beginning.

I kept thinking that it was an awful lot like late 1980s video games. For those of you who have never played: back then, ‘dying’ or losing a level meant going back to level 1. Every. Single. Time. That’s actually a big part of the reason why I never became a (video) gamer.

Yet, the board game reset was fun. In fact, it was fun and challenging for both of us (child and adult), which is difficult to do!

I strongly recommend trying this one out.

I also suspect Santa just might bring a copy to our house this year. 🙂

The Usual Dimension 

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One of the children in my life had the following conversation immediately after waking up: 

Child: I’m glad we live in this dimension and not the other.

Me : Oh, That’s good. What’s in the other dimension? 

Child: Nooooo! We have to build the machine to get there!  We don’t have the parts.

I guess that means we’re stuck here.

Admiration List: Nacole

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I have great admiration and respect for victims of horrendous crimes who find the strength and courage to speak about those crimes publicly. Nacole is one such brave soul who gave a TEDx talk about child sex trafficking – and what it’s like to be the mother of a child who has been lured away and sold.

This talk is brave, powerful and heart wrenching.

Admiration List: Regina Calcaterra

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Regina Calcaterra went from surviving an abusive mother and the foster care system to a career in law and politics. Her life is detailed in the memoir Etched In Sand, which I highly recommend reading.

This woman is a tough survivor who has made the best out of the absolute worst. She is also an excellent example of the fierce loyalty children have toward siblings – and just how positive that bond can be.

Ms. Calcaterra also regularly acts as the keynote speaker at various events and I would love to have the opportunity to attend one of these speeches.

Parenting Is An Action

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“Who’s your mom when you set you campsite? Who’s your mom for scary faces with flashlights? Mommy helps to set up the campsite. Momma makes great scary faces with a flashlight.”

A Tale of Two Mommies, written by Vanita Oelschlager and illustrated by Mike Blanc

Children Will Listen

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Children Will Listen

“Careful the things you say,
Children will listen.
Careful the things you do,
Children will see.
And learn.
Children may not obey,
But children will listen.
Children will look to you
For which way to turn,
To learn what to be.
Careful before you say,
“Listen to me.”
Children will listen.”

Into The Woods, lyrics by Stephen Sondheim and book by James Lapine

Boys in Dresses and 12-Step Dragons

The quotes at the end of this posting come from books that address very specific and special circumstances. These are the kinds of children’s books that generate controversy in ways that I have never understood.

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Many years ago the book Heather Has Two Mommies (written by Leslea Newman and illustrated by Diana Souza) came out and caused a huge uproar in the Midwestern town I was living in. The local library secured a copy and a patron, who has (apparently) never been identified, pooped inside the book – yes, that’s right, an adult found the book, took it into the bathroom and pooped in it. (The book was found, damaged beyond all possible repair, in the bathroom.) Ever since then I find myself wondering which self righteous ‘adult’ is going to poop in the next ‘unapproved’ children’s book that happens to come along.

These two books fall under the ‘unapproved’ category because they cover things that children deal with, struggle with, and face enormous stress and pressure over – but are expected to never, ever talk about. Specifically: A parent’s addiction and the desire to wear unconventional clothes.

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In both cases these things must be talked about and accepted on the part of the child’s family, whoever that may be. Ideally, the situation would be lovingly and respectfully dealt with by the community at large – but that is an idealism. Regardless, these books are extremely helpful tools. They can provide support and get the conversation started, or they can help build a bridge when a parent realizes he or she has been addressing the situation in all the wrong ways.

They also have multiple uses. The Dragon is named Al and the illustrations and storyline clearly lean toward alcoholism, but it can be used to begin a conversation about any kind of addiction. Jacob likes to dress like a princess and wants nothing more than to wear a dress, which is clearly a problem simply soaked in gender-identity and gender-based expectations. But Jacob also wants to wear things that are different from what the rest of the kids are wearing – different from what he is expected to wear. He wants to do things that are different from what is expected of him because of what he looks like. There are many kids who struggle with being different, or wanting to be different, and needing to be accepted for those differences – and not all of them are gender-based variations from the norm.

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So, I was looking at these two books, thinking about how they are very good and necessary things. Yet, I was not (am not) dealing with these specific scenarios. Should I just put them back on the shelves and move on to something more standard and expected in the children’s literature stacks. Are these books truly problem (catastrophe) specific events? Are they best left to gather dust until a special situation arises, when they are pulled down and used to address whatever issue is at hand? Or, are they stories that should be read to all children, regardless of situation, in the same way that conflict resolution focused books are read – to prepare a child for whatever he or she may face?

As it happens, while I was busy mulling over the oh-so-important decisions adults must make, a child asked me to read both books. So (with his mother’s permission), I did – twice (at his request). I don’t think he saw them as special or even unusual. From a child’s perspective, they were just stories. Stories about a boy whose classmates were sometimes mean and about a family with a dragon. Stories about kids. Stories with pictures and adventures. Stories. Period.

None of it was as important or universe changing as I had made it out to be – which may be the lesson that I, as the over-thinking adult, may need to learn.

QUOTES:

“Dad explained to us that Al the Dragon will always be with us. He says he has to work a few simple steps to make sure Al doesn’t take over our lives again. Dad’s new best friend is his sponsor. The sponsor has a dragon, too. They go to meetings.”

The Dragon Who Lives at Our House, A Story of What It Feels Like to Lose Control of your Life, written by Elaine Mitchell and illustrated by Norris Hall

“A bunch of kids laughed. Jacob felt his dress surrounding him. Like armor. Soft, cottony, magic armor.”

Jacob’s New Dress, written by Sarah and Ian Hoffman and illustrated by Chris Case

(C) Adora Myers