Leo, abandonment, & life with Down syndrome in some places

Screen Shot 2015-02-11 at 1.14.14 PMThe story of baby Leo, his parents’ divorce, and his father’s fundraising has blown up on the internet. Here’s something that may be getting lost in the shuffle. 

Initially, the story was that a father, Samuel Forrest, was given an ultimatum by Ruzan Badalyan, his Armenian wife, that she would divorce him if he did not abandon his son with Down syndrome. The father refused to abandon Leo, his son; Ruzan divorced him; and Forrest has gone on to raise almost $500,000 on gofundme so he can raise Leo.

Then, Badalyan put out her side of the story, not surprisingly refuting the ultimatum. Instead, she was alone when hospital staff urged her to give up her son to a state-run orphanage–standard practice still in much of the world, particularly in Eastern Europe and the former Soviet republics. Knowing her son would have a better life if raised in Forrest’s home nation of New Zealand, the couple agreed to split up.

Most recently, it has been reported that Forrest has four children by a previous marriage, with the youngest, a daughter, also having Down syndrome. He has not been permitted to see her for a year due to being excommunicated by his former family’s church.

I think David Perry sums it up best when he says:

the internet is a thoroughly lousy place to figure out the intricacies of a relationship, especially one in crisis, from halfway around the world.

Indeed, it is.

Many bloggers and fellow parents have written about this story: questioning Forrest’s account; noting that if it had been Forrest who had given the ultimatum, it would not be newsworthy and likely not result in a half-million-dollar fundraising success; and, wondering how all of that money actually will be spent.

But, one aspect that I would highlight for purposes of this blog is one that doesn’t seem to be the source of much of the outrage.

Forrest’s fundraising seems primarily motivated  by those outraged that a mother would abandon her son because he had Down syndrome and give an ultimatum that she would divorce if her husband, too, didn’t abandon their child. If Forrest’s initial spin on the story (he’s walked it back) is true, then I think decent people should be outraged over that.

But, if Badalyan is to be believed, then she was lying there, after giving birth to her son, and told by medical professionals that it would be in hers and her son’s best interests if he were turned over to state-run orphanages. I have no doubt believing that this is true, as this remains standard of care in too much of the world. This is, in fact, one of the reasons my colleague Stephanie Meredith wrote to highlight the other efforts that funds could go towards to minimize future baby Leo situations.

Because if the mom’s telling the truth, then the couple made a compassionate decision for their son’s sake.

According to a 2005 UNICEF report on Armenia, the government was to be supportive of a de-institutionalization effort. But that was a decade ago, and Badalyan was still told to institutionalize her child. If the institutions are like any of the institutions in other former Soviet bloc countries, then she spared him from hell on earth.

I say this because I remain haunted by the photo above, included in a 2007 report by MDRI, Mental Disability Rights International, on orphanages in Serbia. The report details the warehousing of individuals with Down syndrome and other disabilities and the nightmarish conditions they live in. The picture and caption sum up that abuse.

Sadly, for many parts of the world, they are where America and other first-world countries were 50 years ago. It remained standard of care into the 1960’s for delivering physicians to advise their patients to give up their children with Down syndrome to be institutionalized. And the institutions here in the United States and elsewhere also were hells on earth for their residents.

It was only through investigative reporting and progressive social policies to de-institutionalize and move individuals with disabilities back into the community that the expectation for a life with Down syndrome could be seen with more hope by parents. They finally had examples of what that life could be like from their neighbor, church member, child’s classmate, and employees at their local stores.

But these changes will not happen in countries like Armenia on their own. Armenia simply doesn’t have the means.

Forrest’s gofundme site says that surplus funds will go to the only orphanage in that country that accepts children with Down syndrome. Hopefully he will be true to his word and donate the hundreds of thousands to improving the lives of children with Down syndrome in Armenia. Per MDRI, as brought to my attention by a fellow parent, his donations would be better spent supporting the families to accept their children, rather than continuing the problem of institutionalization by funding the orphanages.

Otherwise, there’s another baby Leo who will be born tomorrow, and he won’t have a viral internet story to raise hundreds of thousands of dollars.

Instead, he may end up bound and tethered to a crib.

Postscript: while writing this, the Lejeune Foundation USA shared an article by Lizabeth Paulat making much the same points. It delves into the history of why the state of care is such as it is in former Soviet bloc nations. RTWT (read the whole thing). 

Comments

  1. I would much rather that he NOT donate to that orphanage, rather work with those that champion the cause of keeping children with their families. Orphanages just perpetuate the problem. The excess funds would go a LONG way toward empowering families.

    Check out the work that Frank Buckley does:
    http://www.dseinternational.org/en-gb/about-us/people/frank-buckley/

  2. Karen Gregoire says:

    Has anyone with the idea that the funds go to somehow support parents who are accepting of these children in orphanages approached Leo’s dad to educate him about how best to “spend” the money he has raised? I have heard that he has sought consultation. Someone with greater knowledge of how logistically to do that should be reaching out to Samuel.

  3. leticiacvelasquez says:

    How about donate to Reece’s Rainbow who helps place those children with adoptive families in America? I know a family right now trying to raise $13,000 to bring a child home.

    • Another option, Leticia, and one with merit. But, it does have a finite impact, i.e. on just those kids adopted, while leaving the status quo in Armenia for all the Leos to come.

      • I totally agree. Great for that one kid, but does nothing to stop the institutionalization rate.

        • Absolutely. Donating to Reece’s Rainbow is only a tiny drop in the bucket. It is almost always better for a child to remain with their birth family if the family can have the right supports and education and encouragement. Furthermore, many adoptions are done very unethically and with bribes and such, as well as other illegal activities. While I am passionate about kids needs, and have adopted, due to the problems I saw in country with both of our adoptions, I have become very passionate about in-country supports and services to birth families and that is where I am attempting to throw the majority of my time, energy and resources.

  4. Although the picture above is haunting, please know the child is living with and well loved by a family in the US. He also has continued contact with his birth family. Reece’s Rainbow was involved in the adoption and…well…don’t even get me started on that mess.

    • Thank you for the “rest of the story.” Is there a link you can share that reports about the boy being adopted?

      • He is my son. The picture above was taken in 2006 during MDRI’s investigation of Serbian institutions. In 2007 when the investigation was made public he was moved to a Serbian foster home. Although MDRI was not able to verify the name of the child pictured (they did not get the name at the time the photo was taken, it was a “random” photo) I was able to verify it with my son’s birth family. I am in close contact with them as well as MDRI. What proof would you like that I adopted him? He was 6 at the time the above picture was taken. We adopted him at age 10 and the size of a 4 year old. He is now 14.

        • Thank you for sharing that he is now in a better place and loving home. Since seeing that picture seven years ago, I have worried he remained in those conditions. So glad to hear he’s better off, but wish the same could be said for all the residents at the institution. Thank you for opening your home to him.

        • Amy Hernandez says:

          So happy to hear that!

  5. i have a son with downs and that picture makes me cry. but if you try to adopt one of these kids its like $20,000 so who can afford that? most people would pick the normal kids if they have to pay that. they shouldnt have to pay that to adopt. I have a go fund me to try and get a electric wheelchair and only one person donated $100, I need $2500. I don’t think he should get all that money if he’s not supporting his other downs kid and the other 3.

  6. Downside up in Moscow Russia is another organization that helps families keep their children with Down syndrome. They work to supply literature and support to all of Eastern Europe. We are working with them in hopes of finding a home for the now 9 year old little girl we were trying to adopt from Russia. We met her in July 2012 but were unable to finish our adoption due to the ban placed on all Americans. The Human Rights Watch recently did a short documentary on how Russian families are treated when they find out their child has Down sydrome. They are told the child will be better off in the institution and a lot of times the families believe this. The documentary shows just how bad somoe of the children are treated. The little girl we consider our daughter is fortunate because she is in a good place but even her director admits that an orphanage is no place for any child to grow up and that the children would do so much better if they were in loving families. I am grateful to DSU because they have helped hundreds of families stay together. It used to be that over 90% of families left their chidlren at the hospital and now it is closer to 45% leaving them there. It is very disheartening to think of these children be raised worse than animals because their society does not accept them. I flew to Russia last year to be in a documentary about the ban and the treatment of the children and am hoping it will help things change for the better. Most Russian citizens think that Americans only adopt their disabled children because they receive some sort of benefit for doing so. We are trying to change their views in hopes that they will see the beauty in all children and demand their government help support these families instead of taking the children away. http://youtu.be/hH6Li7Dg4Bc

    • Thank you for sharing both your efforts and the video from Human Rights Watch. It should be viewable below and at only 4:33 minutes, hopefully will be watched by many. Some of the quotes are just infuriating: “she may say ‘mama’ by the time she’s 36,” “they’re like vegetables in the garden.” This is the advice given to parents by supposed medical professionals!

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