Webinar on Privacy and Children’s Stories

A robust, controversial, emotional, and complicated topic: Privacy and adopted children’s stories.

How much is too much to share? Do adoptive parents have the right to share some or all of their child’s information? If yes, with whom–friends, family, strangers in the grocery store? What about sharing a child’s personal story (or behaviors, medications, history) on a blog or in a Facebook group?

My daughter Aselefech and I will be talking about this knotty topic via a live webinar Thursday July 18, noon-1pm cdt, sponsored by Children’s Home Society and Family Services. Information about the webinar is available here.

Feel free to send me any thoughts, questions, comments prior to the webinar, either here on the blog or to maureen@lightofdaystories.com.

There’s a lot to talk about…

DNA Testing, Adoption, and Outrage

Imagine a room with a bunch of nice, older ladies. They are mostly smiling.  A few are cranky. I’m in there too, along with other grandmas. (It still shocks me I’m a grandmother, but Zariyah will be 7 in October, and I’ve come to terms with it.  Best thing ever.)

Imagine that some of these nice, older ladies are fundamentally denied two basic civil rights: access to their own original birth certificates, and knowledge of their medical histories. Imagine that your mother or grandmother has no idea what contraindications exist for medications. Imagine your grandma’s painful medical condition that could have been easily prevented with proactive treatment.

I tend these days to first think of adoptees as being not children, but young people, because of my own young adult children. I need to be more inclusive in my thinking and acknowledge more fully the adoptees in their 40’s, 50’s, 60’s, 70’s, and beyond. That’s especially relevant around medical histories.

I posted yesterday about DNA testing and its value to adoptees. I received an absolutely on-point comment from TAO, a blog which you should follow. Now.

Here’s a quote from her comment:

“I am glad there is genetic testing available for many of the same reasons you note and while I don’t disagree with the statement “Finding out about potential future medical conditions could be frightening.” yet, I can’t begin to tell you how frightening actually living through a medical emergency without FHH is, and that reality plays out for adoptees more often than people want to believe.”

Family Health History, or First Family Health History, should be a given. TAO (The Adopted Ones, from the Baby Scoop era) is so right, and has put my delicate statement “Finding out about potential future medical conditions could be frightening” into the light of day where I now say:

Denial of medical histories is an outrage. Knowledge of one’s medical realities is so taken for granted by those of us who don’t have to think twice about it.

Knowledge of one’s medical history can be a matter of life and death. Certainly that knowledge can hugely impact the quality of one’s life.

And yet there are hundreds of thousands who ARE NOT ALLOWED to have this information.

Yesterday I was polite, and provided DNA testing information as if I were giving out lovely little flowers to brighten your day.  I have no doubts that DNA testing is valuable, and provides great information.

But today, I am angry. US and international adoptees, whether they were adopted today or 75 years ago, should have access to their original birth certificates: there remains no doubt in my mind about that. They should also have as full, accurate family health history as possible. It’s an outrage that they don’t, and that they have to struggle to get it.

I would love to see more adoptive parents, grandmothers, grandfathers, adoption attorneys, adoption agency workers, and medical professionals joining in outrage.

TAO noted also in her comment to me that “not all genes have been found for common diseases let alone the estimated 7,000 rare diseases that affect 1 in 12 Americans…genetic tests are a poor substitute for a good FFH.”

Excellent point. Genetic tests are helpful on some level, no doubt. But genetic tests, as they exist now, are no substitute for a thorough, accurate first family health history.

From TAO’s “About” page:

“As you will notice as you read our posts both of us were impacted in different ways by the lack of current updated family health history because of being adopted.  While having the family health history may not have changed the course of our diseases – the knowledge in my case may have prevented two life threatening events, and for shadowadoptee the knowledge that she would go blind sure would have been nice to know…”

Gazillion Voices– An All-Adoptee Led Online Magazine

While there are lots of articles, magazines, and policies about adoption, most are written by adoptive parents or adoption agencies. Very few are written by adoptees. Well, that’s all about to change.

Gazillion Voices will be the first All Adoptee Led publication addressing adoption issues from an adoptee-centric perspective. They’ve assembled an astonishing group of (US and international) adoptee writers, artists, academics, chefs, musicians, actors, researchers, change agents, activists, iconoclasts, and more. It’s gonna be great.

Its roots are in the Land of Gazillion Adoptees blog, and its branches are now looking for a little green.  The Kickstarter campaign launched today. Your donation will be well-placed. The magazine launches in August–I can’t wait.

Full disclosure:  My daughter Aselefech–the one who wrote the most viewed post on my blog ever–will be a contributing columnist. I will also be writing an article for a fall issue.

DNA Testing and Adoption: Filling In Many Missing Pieces

Access to information about our DNA is now easily available. This genetic information is wonderful and daunting for all of us, and perhaps especially valuable for adoptees, whether US or international.

It’s relatively inexpensive ($99) now to find out what percent of your DNA comes from what population (Sub-Saharan Africa, Europe, South America, etc.). Adopted people of mixed background can get an accurate breakdown of information that they may never have received nor otherwise could find out. A friend of mine, adopted from Colombia, found out she is Mayan, Middle Eastern, and Spanish/French.

You can also find out about medical matters,  such as whether you are a carrier for cystic fibrosis, Tay-Sachs disease, sickle cell anemia, and many more. You can learn your genetic risk for diabetes, macular degeneration, Parkinson’s, and other serious conditions.  You can discover how your genetic makeup could impact sensitivity to certain medications and drugs, such as Plavix and Coumadin.

Because the DNA results are all part of a global database, it is possible to find previously unknown relatives, from close family to distant cousins. In terms of search, for adopted people, this is huge.

I drew the information above largely from the website of one of the most popular sites, www.23andme.com. The “23” refers to the number of pairs of chromosomes we humans have.

The testing is done via saliva, about a half teaspoon’s worth. Young children can be tested; the kit is modified for folks who can produce saliva but not spit.

Adoptees are often missing their own medical histories. Every visit to a doctor’s office can be a reminder of loss, guesswork, and uncertainty.  Writing “Adopted” and crossing out the Family History section can be frustrating. DNA testing eliminates some of the mystery, and fills in some of the blanks.

Of course, this genetic information opens a lot of potentially complex new doors.  Finding out about potential future medical conditions could be frightening.

I still will say, though, that information is power. These days, we all have to be really strong advocates for our physical and mental health. Genetic testing gives us more information to work with, and allows us to engage our health care providers more effectively.

I’ve offered to get the testing kits for each of my (young adult) adopted children. They are considering it, and I can understand the need to take some time to decide. I’m going to get the testing done on myself.  I’m not adopted, and I feel pretty confident that my ethnicity will be fully Irish. My mom died at 74 from cancer; she suffered with interstitial cystitis for years. Dad, now 83, is in great physical health, and also in the early stages of Alzheimer’s. So I have some sense for the possibilities, and, at this point in my life, would rather have the information than wonder about it.

Everyone should have that option.

DNA helix

Here are some interesting sites to explore and consider:

www.23andme.com

www.FamilyTreeDNA.com

www.mixedrootsfoundation.org/global-adoptee-genealogy-project

https://genographic.nationalgeographic.com

http://groups.yahoo.com/group/AdoptionDNA

SMH: Not making this up, Only wanting to help

This is one in an occasional Shaking my Head series about random but significant issues in adoption. 

I believe in adoption, I want to see adoptions done with integrity and respect, and I believe adoption practice is changing and must continue to change. A couple of recent examples via Facebook made me shake my head,

An adoptive mom of a 2-year-old from Ethiopia asked for suggestions on getting the little boy to sleep: he wants to be held until he falls asleep, then often wakes and cries. With 4 other kids, the hour plus routine is getting hard. She is hesitant to let him cry it out. The little boy has been home for a week.

A week! My heart ached–only a week since a 2-year-old child–at a big developmental point in terms of brain growth, language acquisition, motor skills–suddenly lost everything he had previously known.

I wondered if the adoption agency had provided any guidance about trauma in adopted children, about transition, about what this child is going through. The advice the mom got online was very good, including  “If you go slowly, always moving toward the goal of getting him to sleep on his own, you will probably get there in 6-8 months,” and “He is probably worried that if you leave at night, he might never see you again (like he has had happen at least once in his life, one week ago,” and “Put in the time now, hire a sitter to help with the other kids. Lie down with him, co-sleep. You will be so grateful later.”

Sleep issues in childhood are huge, regardless of adoptive status. For adopted children, they can be particularly complex and common. I’m glad this mom got such good advice, and in a supportive community.  Hope she takes the advice. I just wonder how many families struggle alone. Helping adopted children adjust to their new life, as infants, toddlers, or older, is a critical post-placement service. Sleep adjustment (the transition to sleep, the ability to sleep through the night, the development of trust and movement away from fear and loss) is a vital skill.  An overtired 2-year-old is no fun in the best circumstances; an overtired 2-year-old trying to adjust to an enormously new life where the people look different, smell different, sound different, where he has no common language, where he cannot express himself pleasantly (because he’s 2)–it’s a hard journey, and a long road. And I’ve no doubts the mom and dad are tired from trying to keep things “normal” for the other 4 children, who are all under 9 years of age.  Oh my.

As happy as the adoptive family is to welcome the longed-for, long-awaited child into their home, the confusion (stress, upheaval) for the child is just as great.

An adoptive mother posted on a closed Eastern European adoption group about how proud she is of her now 18-year-old Russian son, graduating from high school, heading off to college. She noted he “is past all that teenage angst about adoption,” and moving on with his life.

I wish them well.  I’d also suggest that adoption with its joys and sorrows, its realities, its rhythms is far more than “teenage angst.” Many adoptees aren’t even able to process some of the complexities until well into their 20’s or older. And, of course, some apparently have few struggles.  However, to dismiss understanding of adoption as post-pubesecent emotion is to misunderstand the depth of adoption, trust, grief, and loss.

We are all in this together.  It’s so important that we keep talking, that we listen to the  insights of current research, that we acknowledge struggle, and that we seek help to grow strong. There’s so much at stake, and, sometimes, no extra chances to do the right thing.

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Ethiopian Heritage Camp: We Will Be There!

Ethiopian Heritage Camp

Ethiopian Heritage Camp

This August, my 24 year old Ethiopian twin daughters, my 6 year old Ethiopian-Latina granddaughter, and I will be attending the Ethiopian Heritage Camp in Virginia. Aselefech and Adanech will be on a panel talking about “Growing Up in America.”  I’ll be speaking “Parent To Parent” about our journey as a transracial, adoptive family, in which each one of my four children has approached adoption (including search and reunion) very differently.

Adanech, Aselefech, Zariyah, and me

Adanech, Aselefech, Zariyah, and me

And if the rest of the camp–experts on Ethiopian cooking, history, natural hair care, dancing, and more–weren’t enough, my dear and wonderful friend Jane Kurtz will be there too. Jane is the author of many highly regarded children’s books about Ethiopia, where she spent much of her childhood.  Jane also wrote the Lanie books about the American Girl of the Year 2010. Jane and I met over 10 years, when our paths converged in our work for Ethiopia Reads, a small, robust, highly effective nonprofit that is brining literacy to the children of Ethiopia through libraries, books, and schools.

This camp is not just for families who have adopted Ethiopian children, but for all Ethiopian families.  We celebrate together the beauty and wonder of Ethiopia. No, it does not make up for the loss of original culture.  It does, though, provide a chance for adopted kids to get together with others who understand being adopted and being different, for older adoptees to be mentors and role models to younger ones, and for Ethiopians of the diaspora to share their love of their country and its rich, magnificent culture and history.

Birth Fathers, First Fathers: To Acknowledge, Remember, Honor

I wrote last month about Birth Mother’s Day, observed by some on the Saturday before Mother’s Day.

I am a big advocate of birth/first parents, and work to include them in conversations about adoption policy. But I freely admit I rarely note the fathers specifically.

So here today, the Saturday before Father’s Day, I embrace, metaphorically at least, all those men, young and old, who have lost their children to adoption and yet still keep them in their hearts.

I acknowledge all those men who may not know that they have a child, and who may never know.

I honor all those men who wanted to provide a safe, stable home for their children, were unable to, and who did the genuine best they could.

I honor those men who work to connect with the adoptive family in an open adoption, who work to connect with their child’s mother in a complex situation, and who are a positive presence in their child’s life, whether the child is 2 or 32.

I recognize those fathers, dead and alive, who did not get the support they needed, who were left on the sidelines, whose hearts may have broken in silence and without tears.

I hold in my heart those men who no longer have a common language or culture with their child, who are separated by geography or prison or illness, who hold fast to their children nonetheless.

And I offer hope: hope that they are not forgotten, hope that their children are well, and hope that we can continue to enlarge our understanding of family, in a dignified and powerful way, for all the fathers in our lives.

Standards of Practice for Adoptive Parents: It’s Time (Part One)

On May 21, I presented my workshop titled “Standards of Practice for Adoptive Parents: Ethics, Economics, and Responsibilities” at the annual conference of the Joint Council on International Children’s Services in New York City.

(A few disclaimers and a bit of context: I was the first executive director of JCICS, from 1994 to 2000.  I have no connection with them anymore, except insofar as some of the folks from those days are good people and remain good friends.  JCICS has changed a lot since I was there, from an umbrella group of international adoption agencies to a more broadly-focused nonprofit for global child welfare issues. I am guessing most of the conference attendees were adoption agency-affiliated, mostly administrative and executive staff. My workshop was a PowerPoint presentation; if anyone wants the slides, I can share them. My plan here in my blog is to share the main points, providing narrative similar to what I provided at the conference.)

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There is a perfect storm in adoption right now:

* The number of children being internationally adopted has dropped dramatically, but the number of children needing families remains high.

* Adoption agencies are closing, including those certified by the Council on Accreditation.

* There is an increased volume of adult adoptee voices being heard,  and their experiences and insights are becoming better known and respected.

* There is an explosion of Internet postings about fraud in international adoptions.

* There is some assent within the Christian evangelical community–recent big players in the international adoption arena–regarding fraud.

* Increasing numbers of adoptive parents are searching for their internationally adopted children’s first/birth families privately, after adoption, without agency assistance or knowledge, and while their children are little.

* Awareness and connections with birth/first families are increasing.

Given all this, given this perfect storm, where do we begin?

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These are, to me, the minimal Standards:

1. CitizenshipAll adoptive parents–whether they adopted in 1956 or in June 2013–must ensure that their internationally adopted children are citizens of the United States. It is an ethical outrage that this is even necessary to discuss (again and again, still). Read here for more information.

2. Access to Original Birth Certificate. All adoptive parents should make every effort for their children to have access to their original birth certificate. Whether a child is adopted within the US or internationally, they should have access to their original birth certificates. I realize that this is difficult (if not impossible) for genuinely abandoned children. Some children don’t arrive in the US with birth certificates because their birth was not recorded in any official way. Many children however do have birth certificates.  Still. All of them deserve access to this basic, too-often-taken-for-granted legal information: the birth certificate that non-adopted people have, that provides them with basic, vital information about who they are.  It’s a human right.

3. DNA Testing.  All adoptive parents should be aware of options regarding DNA testing, and offer these options to their children. DNA testing is relatively cheap these days, and provides an astonishing amount of information. Most non-adopted people have a decent medical history, a good sense for what runs in the family. Adoptees often do not. DNA testing would fill in some of those missing blanks at the doctor’s office. DNA testing can also connect adopted people to their birth family, or to more distant relatives.  DNA testing also can let people know if they are Sudanese, Irish, German, Colombian, or a combination thereof.

4. Role Models/Mentors.  All adoptive parents should make every effort for their adopted children to have role models around them who look like them, as well as mentors and friends who are adoptees. Real people, real friends, folks who are over to the house for coffee, parties, barbecues. Ideally, these people are in the adoptive parents’ lives and community prior to adoption. Access to role models and to adoptees as mentors can be especially important when kids become teenagers; it’d be great to have them while they’re still in elementary school.

The last two items from my PowerPoint slide above, Guidelines for Connections with First Families and Consideration of New Paradigms in International Adoption, will be the subject of an upcoming post. I will also add additional Standards of Practice.

Update on Hana Alemu: Trial in July

Hana Alemu was an Ethiopian adoptee found dead outside her adoptive parents’ home in Washington state over two years ago.  Many people–Ethiopians, Americans, adoptive parents, adoptees–were enraged and deeply saddened by the circumstances of Hana’s death.  I’ve written about Hana before, here and here. This Facebook group honors Hana.

Hana Alemu (Williams)

Hana Alemu (Williams)

A Brief Recap

Hana Alemu died May 12, 2011.  A report on her death cited by the Seattle Times said she died from “a culmination of chronic starvation caused by a parent’s intentional food restriction, severe neglect, physical and emotional abuse, and stunning endangerment.”

Her adoptive parents, Larry and Carri Williams, were charged with her death in September 2011. In November 2012, they pled not guilty to the charges against them: homicide by abuse and first degree manslaughter by domestic violence.

Carri and Larry Williams

One reason perhaps for the delay in getting to trial has been Hana’s age. She was thought to be 13 when she died.  Also in November 2012, the judge agreed to the prosecutor’s request to exhume Hana’s body to confirm her age. The exhumation took place in January 2013, but the findings were inconclusive. Lawyers are now trying to track down Hana’s Ethiopian uncle, who may have been present at Hana’s birth, and could thus verify her age.

Hana’s age matters because the “homicide by abuse” charge applies only to children younger than 16. My understanding is that the penalty for homicide by abuse is more severe than that of manslaughter by domestic violence. The prosecutors, on behalf of Hana, will argue for the Williamses to get the harsher sentence.

Update

On June 7 2013, a brief hearing was held in Skagit County to work out administrative details for the upcoming trial, expected to begin July 22, 2013. It could last for weeks. I expect it will get a lot of media coverage.

Many people from the Ethiopian community and the adoption community will be there, to honor Hana, hoping that justice will be served for her. I will be among them. We can’t forget her.

Far Away, Always in My Heart

This post is written by my daughter Aselefech Evans. Thank you.

I assumed that once I (re)met my biological family in 2011, I would feel more complete and sure of whom I was becoming.  Some hard questions were answered. And a lot of new ones are on my mind now.

I was 6 years old in 1994 when my twin sister and I arrived in the US from Ethiopia. We had memories, and family, parents, siblings, cousins. For years, I had this soft image of my mother, a kind, loving and giving individual who would just about give up anything in the world for her children to be happy and safe.  That was the love that kept me strong. That was the love that allowed me to embrace my (first) (Ethiopian) family when I returned in 2011.

See, the thing was that distance never changed how much I love her.  Although her face slowly started to disappear as I lost my native language, that tender feeling in my heart for her was always alive and burning. No one could ever tell me that I was not loved nor well taken care of before I came to the US.  Because you see, my past says otherwise.  I came from a poor family, but we all were rich in the sense of culture, unity, and love.

Embracing my mother upon arrival in Ethiopia, and looking into her tired eyes, I saw years of pain, emptiness, regret, and much heart ache.  Although in that moment she was happy to see me, the sadness really never left her eyes.   In front of me I saw a strong and resilient woman, one who had grown very weary of her circumstances but yet was still hopeful.  It’s quite profound that hope and faith during times of destitution and despair are what give certain people purpose and meaning.

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So where do we go from here? I really don’t know. We can’t change the past. I’m trying to figure out the future, without a common language but with lots of love.