What Does Alzheimer’s Have to Do With Adoption?

Sometimes I wonder if knowing my medical history is a blessing or a curse.

Watching my dad go through Alzheimer’s disease has made me wonder if I will go that path as well. A new report in Annals of Neurology links Alzheimer’s with rosacea, a skin condition which I’ve had for several years. I’m at the point where I understand that this Onion article about trying to hide normal memory issues (so my kids won’t put me in a home) is both really funny and poignantly close to the bone.

I have many things for which to be grateful: preventive health care, good medical insurance, loving family and friends. I can’t Iive my life in fear. I am seizing the day (the moment!) with intention and joy, as much as possible. “After the ecstasy, the laundry,” says Buddhist writer Jack Kornfield. There’s plenty of mundane to go around in the midst of enlightenment.

About that enlightenment: I have some sense for my genetic possibilities. It gives me options to prepare, to inform my doctor, and to make decisions as best I can.

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That reality gives me a tremendous advantage over way too many adopted people, who are denied their own medical histories.

Though I never knew her, I enjoyed the writing of Susan Perry (a mom of two and grandmother of six, a retired teacher in New Jersey) who wrote a thoughtful blog called Family Ties. She was adopted as a baby. She died just over two years ago from melanoma, less than a year after connecting with her biological sisters and finally learning about her own genetic history. It was too late for her to engage in preventive care. While it’s wretched consolation, her daughters and her grandchildren now have more medical knowledge about their own histories as well. Susan was a strong advocate for adoptee rights, and her daughter continues to post on her blog, providing valuable insights.

As Von of the highly regarded blog The Life of Von rightly pointed out to me, adoptees don’t “deserve” to have access to their medical histories, for themselves and for their children and grandchildren. It is their right. It just seems so obvious, but we still–in 2016–limit the access of human beings to their own information. It’s an astonishing failure of civil rights.

There was never any legislated guarantee of privacy given to birth parents who placed their children for adoption. Today, some 20 U.S. states allow some form of access by adoptees to their own birth certificates. Several state laws have restrictions, including veto power by birth parents.

The saliva sample tube for DNA 23andme.com testing

Many adoptees use Internet search services and other means to find their information. Some use DNA testing which can help locate cousins, siblings, and sometimes parents. It is possible to get medical/genetic history from DNA tests, but it is far better (and a basic human right) to be provided with the correct information about one’s actual history.

Of course, it’s not just knowledge about physical health that is vital, but mental health as well. Knowing the history of depression (or schizophrenia, anxiety, alcoholism, addictions) in one’s family, for example, can be life-saving.

Being adopted should not mean being denied access to life-saving information. Yes, I find it sobering to know my medical history sometimes. I don’t take it lightly, nor for granted, especially knowing that thousands and thousands of people don’t have the option to know, to take proactive steps to care for themselves, and to pass the information on to their healthcare providers and their family.

 

Further information:

(Birth Mother) First Mother Forum

Adoption and Birth Mothers: Adoptee Rights

Bastard Nation: Adoptee Rights

The Declassified Adoptee

American Adoption Congress

 

Suicide and Adoption: We Need to Stop Whispering

Update: For resources about adoption-related suicide awareness and prevention, here is information.

Just this morning, as I was getting ready to post this, I read on my Facebook feed about a 28-year-old Korean adoptee who died by suicide two days ago. I did not know her. She was the same age as my oldest son, and she had a daughter about the age of my granddaughter. May she rest in peace.

I am holding in my heart a 20-something-year-old adoptee, adopted with a biological sibling into a huge adoptive family (more than 25 kids). He is overwhelmed all the time these days, as a result of things he has done and has had done to him. He wants to go home, though he’s not sure any longer where “home” is. He is in great need of mental health services, and is intently resisting help. He is teetering on the edge of suicide.

Yes, I know most adoptees do well. But this one is struggling, and it appears to be the result of events after he was adopted. His adoptive family has abandoned him.

My two most shared blog posts (shared over 1000 times on Facebook) are “Does ‘Adoption’ Really Equal ‘Trauma’?” and “Fisseha Sol Samuel: Irreplaceably Marvelous.” Both deal with a hard side of life: trauma and suicide. The first post says, yes, adoption is trauma, and there is a spectrum of response to it. The second post was written last October following the suicide of an Ethiopian adoptee who had previously exhibited no symptoms of depression, and whose death was likely (we will never know for sure) the result of a sudden, triggering, traumatizing event in which he was overwhelmed and impulsive. Fisseha’s mother, Melissa Faye Green, has written several powerful posts as she sorts through her son’s death.

Here is an excerpt from my post about Fisseha:

“There is sobering research that says that adoptees are four times more likely to attempt suicide. It’s here in Pediatrics, the journal of the American Academy of Pediatrics. Not lightweight stuff, and even more startling in that the mean age of the 1000 participants was about 14. Out of the total group, which included adoptees and biological children, 56 had attempted suicide; 47 of those were adoptees.”

I am holding in my heart a 14-year-old Eastern European adoptee, who is too familiar with drugs and sex, who is loved deeply by her adoptive parents, who is in various therapies, who cuts herself and threatens suicide often. She can be a bubbly, sweet teen, and also a deeply frightened and frightening out-of-control mystery.

Yes, her struggle may not be the result of being adopted, but rather of what happened to her before she was adopted. She is struggling, and those who love her are deeply worried.

No one enjoys thinking of adoption as a trauma. No one likes to talk about suicide. And, I know: most adoptees–most people generally–don’t consider or die by suicide.

That said, let’s start thinking and talking about the link among adoption, trauma, and suicide. Let’s insist that suicide awareness be a part of pre-adoptive parent training classes. Let’s demand that anyone who claims “adoption competency” in their therapeutic practice is extremely knowledgeable about suicide. Let’s actively and shamelessly share resources to prevent suicide. Let’s request workshops like “The Presence of Suicide in Adoption” as a topic at adoption-related conferences. We need to stop whispering about suicide and adoption, and to speak about it with clarity and without fear.

I am holding in my heart a 16-year-old adoptee from India, beloved by her adoptive family, mentored by an adult Indian adoptee, raised in Minnesotan suburbs, who killed herself about a month ago.

Yes, she struggled, and also was offered and received help. She may be at peace now, though all those left behind are filled with sorrow and questions.

These 3 adoptees are among the reasons that we must talk about the role of trauma and suicide in adoption.

A few weeks ago, I was at the national conference of the American Adoption Congress. The main legislative advocacy effort of the AAC has historically been access to original birth certificates, a means of allowing adopted persons to know who they are, a basic human and civil right.

What is the connection between suicide and the AAC’s legislative efforts? Well, there may be a genetic component to the likelihood of suicide. Access to one’s medical and mental health history–too often denied to adopted persons–could be a matter of life and death. Knowing about a history of depression or other mental illnesses in one’s family could mean proactive treatment and interventions. It is yet another reason that closed records are unfair, untenable, and wrong.

Here are links to two medical journal articles:

Genetic and Familial Environmental Effects on Suicide – An Adoption Study of Siblings

Genetics of Suicide: An Overview

Many adoptees are adopted into families where the adoptive parents are well off financially, have attended college, and are in highly regarded professions.The adopted children go to excellent schools and often have wonderful opportunities. Still. Take a look at “Best, Brightest–And Saddest?”, in which Frank Bruni reflects on the “suicide contagion” among teens in Palo Alto and elsewhere who are under pressure to succeed academically in highly competitive situations. The article cites a CDC report that says 17 percent of American high school students considered suicide in 2012. Eight percent said they’d attempted it.

Suicide, of course, feeds on trauma and depression, and does not discriminate based on economics and education. While the “suicide cluster” among high schoolers in “epicenters of overachievement” is discussed in the New York Times’ article above, there has also been a similar tragedy–which has not made national press–among young people in Seattle. Three young men, ages 18, 18, and 20, who were students at the Seattle Interagency Academy (SIA), died by suicide, within a 4 month period in the last year. SIA works with at-risk youth, who have struggling families and who are often homeless or on probation. Listen to an excellent podcast with the SIA principal here.

Coincidentally, there was a string of 7 suicides by adolescents on the Pine Ridge Indian Reservation in South Dakota around the same time. No one is quite sure why this is happening, though bullying and grim prospects for the future seem to be significant.

I don’t know if any of these young people had spent time in foster care or were adopted. Certainly, though, their life paths echoed those of many young people whose families are struggling mightily, and those struggles are often the reasons that children land in foster care and/or adoption. Racism and micro-aggressions can significantly affect the mental health of transracial adoptees; I wrote about that reality here. Even adoptees placed as infants in same-race families can struggle with loss, grief, identity, and feelings of not belonging. It’s clear that many of these challenges manifest in adolescence.

This is all daunting tough stuff. I am seeking a balance: to acknowledge suicide prevention as a goal about which we can all speak in the adoption community, not over-reacting, being pro-active, and supporting each other. My next post on this subject will give some resources.

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Light Through Trees, Forest near Lake Langano, Ethiopia © Maureen McCauley Evans

DNA, Pandora’s Box, and Answers?

As expected, the performance of Sun Mee Chomet’s play “How To Be A Korean Woman,” was powerful, funny, moving, and complex. I was in the audience at the Guthrie Theater in Minneapolis last Sunday afternoon September 22. I then participated in a “talk back” panel along with Sun Mee and with Michelle Johnson, a transracial adoptee (you may have seen her in the highly regarded Struggle for Identity); she’s now the CASA/Guardian ad litem Volunteer Coordinator for the 4th District Court in Minnesota. The topic of our panel was “Moving Forward: Grappling With Unknowns and Never-Will-Be-Knowns.” We talked about our perspectives on adoption issues such as search, reunion, identity, and the struggles to know, to understand, what it means to be adopted and to find answers. And then–what to do with the answers, which inevitably bring about more questions.

(L-R) Maureen Evans, Michelle Johnson, Sun-Mee Chomet

(L-R) Maureen Evans, Michelle Johnson, Sun-Mee Chomet

It was such a privilege to see Sun Mee’s play again, which is now moving toward a well-deserved global tour in Europe and elsewhere. I was also honored to be on the panel with Michelle, whose mom, grandma, and sister also attended the play. Family is amazing.

One of the questions about from the audience was about “unknowns” in an adopted child’s past, and how sometimes there seems to be no hope of finding information.  I commented about the new DNA technologies, which (like so many issues in adoption) answer some questions and create new ones.

DNA Test kits from 23andme.com

DNA Test kits from 23andme.com

A while back, I asked my own children if they were interested in DNA testing. Of my 4 adopted children, now ranging in age from 24 to 26, one was very eager. One said “No, thanks.” One said “Yeah, that sounds interesting, ok.”  One said, “I don’t know.  I’m on the fence.” To that one, I said, “Well, I’ll get the test, and you have 2 years to send it in. Take your time deciding, but this way you have the option.”

The photo above is our family’s newly arrived kits.

The way my sons and daughters responded to the idea of the DNA testing sums up the nature of adoption: each individual responds to it somewhere along a spectrum. Some adoptees are deeply, achingly curious about their roots and origins. Some are sort of interested, and maybe will be more so when they marry or have children. Some have no interest, and that may be due to fear or contentment or something in between.

Each of my now young-adult children has some degree of information about their first families. One has reunited. But none has a detailed medical history.

That’s one of the adoption puzzle pieces that the DNA tests can partially solve.

We decided to use 23andMe for the testing.The first kit is $99, with discounts on additional kits. It’s an easy process: when your kit arrives, you register it online, you fill your funnel with saliva, you send it back in the pre-addressed box it arrived in, and then you get results emailed in about 4-6 weeks.

The funnel tube for saliva sample

The funnel tube for saliva sample

I’ve paraphrased and rearranged information from 23andMe below. Be sure to check out their detailed information on the 23andMe webpage.

Health Risks:  You will find information about how your genetics influences risk for complex diseases like type 2 diabetes and colorectal cancer. We provide an estimate of your risk, using the 23andMe Odds Calculator. These estimates do NOT take into account personal or family history or your lifestyle or environment. There may also be additional genetic factors, yet unidentified or unavailable to our technology, that also contribute to risk for these conditions.

Inherited Conditions: You will learn whether you have genetic variants linked to rare genetic diseases. While most common diseases are complex and result from genetics as well as environment, some conditions — like cystic fibrosis or sickle-cell anemia — are directly caused by genetic variations, also known as mutations.  You might be also be a “carrier” for that condition or mutation. It is still possible to be a carrier for a condition even if your results indicate that you do not have any of the reported mutations.

Drug Response:  You will find information about how your genetics may influence your sensitivity to certain drugs, risk of side effects or general effectiveness. Always work with your health care provider to determine whether a drug or medication is right for you.

This is all, admittedly, very serious and daunting stuff.

I wrote about the complexities of DNA and adoption here and about DNA and outrage here. Is getting this information little more than opening a Pandora’s box of disease possibilities? If my child finds out he or she has a great risk of cancer, is that helpful?

I don’t know.  I am going to make sure I go over with each of them what the information will provide, and leave it to them as to whether they want to be tested, want to read the results, and want to do anything with the results. At a minimum, they have control over this decision, unlike many in their adoption journey.

I’ve known adoptees who have struggled with difficult medical conditions, who endure pain and misdiagnoses and wrong medications and debilitating side effects. If they’d had their medical history (including health risks, inherited conditions, and drug responses), maybe much of the pain could have been avoided, the treatments done in a timely manner, and less time and money wasted.

Knowing you’re a carrier of certain genetic diseases seems important; at least it seems you should have the option to know. The medical information creates ethical questions, I realize: questions that can affect future generations. Information can be power. I like the idea of being able to work more closely with my health care provider to manage my health in as proactive a way as possible. It’s big stuff.

At the bottom of Pandora’s box was Hope. That seems important too.

In a follow-up post, I’ll be writing about 23andMe’s information about ethnicity and ancestry–much less ethically complex, perhaps, but still challenging.

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…”