Monday, May 07, 2012

Down syndrome at the table

Mekdes and Tigist leaving the orphanage.  For good.

It's been a little over seven months now since our two Ethiopian daughters came home and joined our family.

And if you've read my blog for any length of time then you know my sweet girlies have Down syndrome, which basically amounts to some developmental delays, heart defects, and the desire to give out hugs and kisses to everyone they meet.

I've honestly been surprised to discover that bringing home two adopted children with Trisomy 21 has not been much different (so far) than adopting children without a genetic disorder.  My sons came home at 16 months of age back in 2006, and one of them was not walking yet, and neither boy talked for quite some time.  Both of them have had challenges along the way (learning delays, ADHD, sleep apnea, low stress tolerance).  Apparently early childhood trauma affects brain function--who knew?  (Of course as my girls grow, the cognitive gap will widen, but that's okay too.)

Yet as international adoption has increased in popularity (primarily in Evangelical Christian circles), I've noticed that there remains little focus within the mainstream adoption community on children living with developmental delays.  Yes there is some, but there is disproportionately little.

Why is this voice not being represented?  Is it because we adoptive parents want to believe that if we adopt a neurotypical child, the road will be smooth with no bumps at all?  That our child will assimilate effortlessly into our family?  That lack of nutrition, a revolving door of caregivers and the potential for past abuse and neglect will not manifest itself somehow in our kids from the hard places?

A post-institutionalized child will struggle, no matter how healthy or "typical" they are.  There will be obstacles to overcome and some days will be hard.  You will question what you always thought you knew about parenting as you look at your friends raising their two biological children, because your life is a whole heck of a lot more complicated than it used to be.

Orphan care ought to first and foremost be about speaking out for children in need.  Period.  And the inconvenient truth of it all is that many of these children have Cerebral Palsy...HIV...autism...Hep B...Down syndrome.  And it's true that with every one of these labels comes a set of challenges, medical bills, and sleepless nights. 

But the other inconvenient truth is that "healthy" children have labels too, they're often just hidden.  And these labels don't discriminate between "healthy kids" and the "special needs kids."

They are things like attachment challenged...PTSD...ADHD...traumatized...sexually abused...learning delayed.

When we adopt a child out of an orphanage, we embark on a journey of raising a small person with some big--and unique--needs. 

And that's why I don't understand why voices speaking out for children with genetic disorders or other developmental issues are so underrepresented at conferences and adoption agencies and, quite honestly, at the adoption table in general.  They're informally designated as a small subset of the adoption scene, and interested families are relegated to the category of Saintly Prospective Adoptive Parents.  Who pretty much have to navigate the complex system alone if they want to pursue the adoption of a developmentally delayed child.

Oh how I would love to see workshops and keynote addresses offered that specifically address the dire situation that these most vulnerable of waiting children face, and what you and I can do to help. 

Oh how I wish more people were being armed with information over schmalz, and facts over feel-good rhetoric.  No glossing over challenges or difficulties or the most-asked question "Will your kids need to live with you forever?"  No ignoring the fact that these children may have profound and lifelong needs.

No, it should be told the way it is.  The truth.   

But there would also be a lot of cute anecdotes and why-yes-you-can-adopt-two-children-who-will-have-three-heart-surgeries-within-three-months-of-coming-home-and-live-to-tell-about-it.

Because, simply, that is LIFE. 

And these kids deserve a shot at one.

And this story needs to be told, so even though I'm not a fancy, sought-after presenter on the adoption conference circuit, I will use my small corner of the interwebz to say that if you are considering an international adoption, PLEASE consider adopting a waiting child with medical needs and/or developmental delays.

I have adopted two of them myself.

They both have Down syndrome.

They have both had heart surgery.

One of them has had open heart surgery.

They may live in our home as adults.

Or, they may not.

They have some developmental delays.

But they are developing.

They are so sweet.

And they are so stubborn.

And they are children.  Created in God's image.  Relinquished by birth mothers who could and/or chose not to parent.  Which meant that they lived in an orphanage for two years and that they needed a family.  Both precious girls were at incredibly high risk for abuse and neglect--and will be throughout their lives. 

But they are safe now. 

And I want other children to find safety too.

So please remember that these kids matter, and make room at the adoption table for orphans with developmental delays.  Lives are depending on it.


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