Truth Be Told (the details that hurt)

We've been home with Seth now for just over two weeks, and have had him in our care for just over three.  He is such a sweetie, doing well in every way.  We could not be happier.  His siblings love him and he loves them.  He is adjusting well, not only to being in a new (and foreign) country and new language, but to being in an insanely busy family with tons of activity and energy.  There is no fear, no tantrums, no anger.  We have no food problems and minimal sleep issues.  We simply could not love him more.  Is it good?  Oh yes!  Is the adjustment without bumps and glitches?  Well.... no. 

Forgive me at this point if I sound whiny, because I know this could be so much worse.  I know so many who are experiencing worse in an effort to save their child.  Adoption is not easy.  It is costly.  Not just in dollars, but in emotions.  It hurts to watch a child hurt.  It hurts to heal a child.  The stakes are so incredibly high when dealing with Heavenly Father's children.  And so incredibly worth it.  So I'm telling the details to educate you, help you to understand why I'm so jumpy and protective of him, and to maybe get some advice and counsel from those who have faced similar behaviors. 

Truth be told, orphanage life stinks.  Period.  Being in a wheelchair all day long stinks.  Being spoon and bottle fed stinks.  Being put back in diapers stinks.  Never receiving any schooling stinks.  Receiving limited therapy and inadequate healthcare stinks.  Never being taught colors, letters, numbers, or shapes stinks.  When I say he's delayed, that's an understatement.  How could that life and that neglect not have an affect on him? 

When we learned that Seth needs glasses badly, someone said "I can't believe someone in his country didn't catch that".  Well, I can.  Because I highly doubt Seth ever received a vision screening.  Nor a dental exam.  He's received minimal health care, limited therapy, and no schooling.  Truth be told, Seth's life was sustained for six and a half years.  They actually took good care of him, physically.  In their minds, they even loved him.  But in his country, physical disability = mental disability, and mental disability will earn a child a lifetime sentence in a mental institution, with little opportunity for ever getting out.  Ever. 

In a country that frequently abandons their babies with special needs, the thought that these children would be adoptable and wanted is unheard of.  Children with special needs will almost always find themselves in a mental institution sometime before their sixth birthday.  So if they are abandoned, and there's little chance of adoption, and they will never be expected to live on their own, why take care of them beyond the most basic needs?  Why educate them?  Why train them for a job?  Why teach them self care skills, preparing them for independent life?  Understand, when I say Seth would have never received anything in his country, I mean just that.  He received nothing.  Nada.  Nor would he have. 

Children with any kind of special need get a very raw deal in the orphanages, but in my opinion, children who can't walk receive the very worst sentence.  While in the baby house, Seth spent most of his days either in a playpen or a stroller, with limited access to other kids or toys, because they consider the floors dirty and won't let children who can't walk play on them.  That is bad enough, but once transferred in June, he literally spent three months strapped in a wheelchair, sitting in a circle, watching grown wheelchair-bound men groan and rock and grind their teeth, with no access to anything even remotely stimulating and no one to talk to.  My little Seth.  My sweet little Seth. 

When he was at the baby house, he was considered "of high intellect", could drink from a cup, was potty trained and was almost walking (although still kept in a stroller or playpen). When he was transferred, they took that away from him, gave him a bottle, put him in a diaper and strapped him into the wheelchair, all in an effort to keep mess to a minimum, to mainstream their job and care.  He's lucky though.  Many who can't walk find themselves confined to a crib.  All. Day. Long.  Wheelchairs are slightly more stimulating than cribs. 

I had recent pics of Seth before he was transferred and reports from several people.  I knew what to expect from Seth.  That was before his transfer.  When we came into the room to meet him for the first time, I did not even recognize him.  I had to ask the director which one he was.  There he was, strapped into his wheelchair, crumpled over, no life in his eyes, vacant, not willing to make eye contact.  Where did my smiley little boy go?  What had they done to him? 

Over the course of the next five weeks, we drew him back, claimed him again.  Re-taught him the skills he had lost.  But it really isn't til you grab them, put them in a car, drive away, load them on a plane and fly them for 30 hours to bring them home that the real work begins.  The real pain comes out.  The real trauma is dealt with.  For Seth, that comes out in a couple ways.  Both are considered self stimulating behaviors.  Stimming for short, these behaviors are coping mechanisms, boredom busters, the product of sensory deprivation, a sign of overstimulation.  Theories abound as to why kids who have lived in orphanages do it, but most do.  Rocking, head banging, "checking out", flapping hands.  All considered "stimming".  Seth doesn't do any of these types of stimming. 

Seth's stimming looks like a full body, full-on, seizure, but it's not.  We know it's not because he can stop for a break, take a snack, be distracted.  He does this several times a day, but it makes it rather uncomfortable to take him very far because it's completely unpredictable.  I'm learning to accept that this is what he does.  This is how he's coped.  But it's difficult to watch.  It's hard to be comfortable with it.  It's even harder to explain.  This is how he's survived.  He knows no other way to relax, process, fill time, de-stress.  It is likely that over time, as he sees better and learns to be more mobile, his stimming will decrease and may even disappear.  But for now, this is what it is.  So if you see him having what looks like a seizure, don't be alarmed.  It's just part of his sweet little package.  :)

We have a better handle on his other stimming behavior, but know less how to deal with it.  While we don't know what causes his seizure-like stimming, we know his out-of-control laughing is from being overstimulated.  This is when he bites, pulls hair and scratches.  He is generally a very sweet and loving little boy, but when he's done, he's done, and at that point, we're not sure how much awareness he has.  His laugh becomes maniacal and there is little we can do to soothe him because it only overstimulates him more.  Leaving him alone, moving him to a quieter place....  nothing seems to help.  So I caution the kids to stay out of his way for a bit and I do what I can to help him... and I wait it out.  Sometimes I wait for a very long time.  Last night, I waited for two and a half hours. 

That's the ugly part of this.  The part you need to know, because you're our friends and because you stand ready to love Seth.  This is the trauma that results from children being abandoned and warehoused in low care, low love, low touch, low communication buildings.  Massive delays.  So massive that we're teaching a six year old how to clap and how to feed himself.  We're watching a six year old joyfully doing what a "normal" three year old does.  We worry.  Of course we do.  But we also have assurance from many professionals and friends that he will move beyond this, that he will progress and quickly.  He will get better.  He will overcome.  What exactly that means, we're not sure.  But we know he is likely to move beyond where he is today.  But just like all of our children, development is a series of steps.  Before he can be a happy, well adjusted six year old, he has to first be a happy, well adjusted two, three, four, and five year old.  That's the ugly part of this.  That's the painful part of this.  The reality of what abandonment and institutionalization does to a child spiritually, emotionally, developmentally.  The parts that make me cry for him.  For this sweet little boy who never asked for any of this. 

That's the truth of this.

For those of you not on FB, here's a few pics of our handsome little man: 

Seth, enjoying some sister-love:

Loving his milk:

On his way home from his first time at church:

More sister-love: