Reality

I almost don't know how to put this into words.

Perhaps these will not be the right words, but I can't be silent any more than I could be silent when I first discovered the plight of orphans over a year ago.

Today I want to talk to you about something truly heartbreaking... something most of us in this country can't imagine.  

In this country, services are available to people with special needs.  Therapies.  Specialist doctors.  Adaptive equipment.  Public facilities are required to be accessible to people with every type of limitation.  Government assistance is available to aid families in obtaining the sometimes expensive treatment these children and adults require.  It is not always an easy system to access - playing phone tag, ferrying loved ones to and from appointments, arguing with officials... but it is something... though not perfect, the best system we've got.

In this country, if you receive a prenatal diagnosis that your child may have special needs, you have enough options to overwhelm you.  Sadly, most parents who receive a prenatal diagnosis like down syndrome choose abortion.  90%, in fact.  All those families that will never know the good that comes along with what at first seems like a bleak diagnosis.  For those parents who choose life for their child, or those parents who do not find out that their child has special needs until birth, there are yet more options.  Did you know that there is a waiting list of families who want to adopt a child with down syndrome?  And should you choose to parent your child, there are hospitals, special needs schools, equipment, therapies, all those things I referred to above, to help you and your child.

I know that it is still scary for most people to receive a prenatal diagnosis, or to find out after giving birth that their child has special needs.  You mourn the loss of the life you imagined for your child.  Regardless of what services and options are available, it is not what you expected... it is a great unknown, and we all fear the unknown.  I don't want to take away from the struggle families face in this country when they receive such news.  But I do want to open your eyes to another sort of struggle... one that we can't even imagine because the days of 'decisions' like this are, for the most part, long gone in this country.

Across the world in Eastern Europe, prenatal diagnoses are uncommon and many expectant mothers lack the resources to get proper prenatal care.  They spend nine months expecting and preparing for a baby... just like families in this country do... getting everything ready to bring their little one home.  They give birth, and sometimes, that is when their worlds fall apart.  That is when special needs, such as down syndrome or cerebral palsy or spina bifida are discovered.  That is when, in the face of mourning the life they expected for their child just as parents in this country do, they face an even more terrifying decision.

Because, in most of these countries, there is no social support system in place for families with children with special needs.  No therapies, no adaptive equipment, no government assistance, frequently not even physical accessibility!  Imagine giving birth to a child who may never walk when you live in a one bedroom, fifth floor apartment, accessible only by flight after flight of stairs, with no means to move elsewhere?  Imagine knowing that you must raise this child - do everything - on your own.  Imagine knowing that where you live, it is not a common thing to parent a child with special needs, and you would likely be shunned by society and even by your own friends and family.  Imagine knowing that if you struggle financially, which you will likely do without any social support systems to aid you in raising your child, you are on your own - left to ruin.

Doctors and nurses tell mothers of these special children that they cannot raise them, that the children will be better off in an institution with other children 'like that'.  They make families believe that the life their children will have in an institution will be better than any life they could possibly provide for their own child, when nothing could be further from the truth.  Parents in vulnerable emotional states are pushed to make life-altering decisions in the blink of an eye.  Often, they trust the doctors - they are doctors, after all... they must know what is best for a child 'like this'.  They give up their children.  They go home empty-handed, to a home prepared for a child who will never live there... and their children... they go to institutions which do little more than warehouse the mentally and physically disabled.

I could talk for hours on what conditions are like in these institutions, but I have done this before.  Right now I want to focus on those parents... the ones who had to make that heartwrenching decision... the ones who thought, who hoped they were doing the right thing for their child.  Most of them did not give up the child because they rejected him or her for having special needs... they are parents too, who love their children... parents who give them up in hopes of giving them a better life, or who are pressured and feel they have no option other than giving their children up.  It is the hardest thing most of them will ever do.  I place no blame upon the parent who chooses what she thinks, with the information she has, is the best option for her child and her family.  My heart aches for her... for her empty arms and her broken spirit.

Many of us ask, "If these parents love their children, why do they never visit them?"  Well, it is not simply that easy.  Often children are taken to institutions far from where their families live.  Travel is difficult and expensive, if not impossible.  Parents, who may have other children to provide for, have to work hard to make ends meet.  And even if we remove the logistical constraints, can you imagine going to visit the child that you gave up in hopes that he would have a better life... and seeing him like this?

...and not being able to do anything about it?

For many parents, it is just too painful.


They still want the best for their children.  Many of them hope that their children will be adopted internationally, taken to a place with greater resources where their needs will be met and they can grow up in a family.  In certain Eastern European countries, Reece's Rainbow is known by many birth parents, who, after making the heartbreaking decision to give up their child, beg for them to be listed on 'the rainbow' - so that a Canadian or American family might adopt them and give them the life that parent has always wanted for her child.  Some of them ask about their children after they are adopted.  Some of them even have contact with the families who adopt their children (this is generally at the discretion of the adoptive family, but I have seen it happen and I can only imagine how it must both soothe and wrench a mother's heart to see her child thriving in a family she could not provide).

Imagine going through the heartbreak of giving a child up, not knowing where she is or if she's being taken care of, and then finding out that she has, in fact, been adopted and is receiving not only the therapy and assistance she needs, but the love of a family.

My friends, adoption is redemption.  Of the child, this, we know.  We have seen children redeemed by adoption over and over.  But it is redemption for the broken-hearted families who give them up too.  It is the happy ending they dreamed of for their child... the one they couldn't provide... the one they were imagining when they made the devastating decision to give up their child.  It is a million times better than not knowing... or knowing the horrible truth.

Someday I hope and pray that there will be support in place for these families to keep their children.  I actively support organizations dedicated to this cause.  Until then though, we do the best we can with the system we have... and one thing is for sure.  Adoption is redemption.

For the video that inspired this blog post, please go here.  I know many of you will not watch it... because once you see, you can't un-see... but perhaps seeing is the push that we need to do something.

Please.  I'm begging you.  Do something.

Because this could so easily be the reality for people we all know and love.

Imagine

Imagine if, one day, you woke up and you couldn't get out of your bed.  Nevermind why.  Maybe your legs didn't work.  Maybe there were bars so high you couldn't climb them.  Just imagine it.

Imagine that you're hungry, so you cry out, but no one comes to feed you.  Imagine that when they finally do, hours and hours later, you're hastily fed a watery mush that doesn't even take the edge off the gnawing pain in your stomach.

Imagine that in your room, there are dozens of other people stuck in their beds.  They're crying out.  They're hungry too.  They want to be able to help themselves, just like you, but they can't.  Imagine hearing their moans, cries, all night long... not sleeping.

Imagine that the only person who ever cares for you (and I use that expression loosely) gets tired of you and the others grunting and rocking and crying out at night, and shoves medication down your throat.  It makes you feel strange, heavy, and you fall into more of a coma than a sleep.  You don't feel like yourself even when you wake up.

Imagine that you have to go to the bathroom.  There is no call button for a nurse to take you out of the bed to the bathroom.  That does not happen.  You have a diaper - that's what it is for.  Only it hasn't been changed all day.  You're soaking in your own waste and you can do nothing about it.

Imagine the hours passing by.  There's no TV, no music, no computers or video games, no toys or people to talk to... nothing but you, your fellow sufferers, and the sterile, hospital green wall across from you.  Imagine one hour like this.  Nothing to do but lie there.  Unable to sleep anymore.  Imagine two hours like this.  Trying to find something to occupy your mind.  Imagine the whole day like this.  It passes by agonizingly slowly.

Now imagine living that day over and over for years.


How long until you lose your mind?



Psychology theorizes that there is a hierarchy of needs - at the bottom are basic physical needs.  Food.  Shelter.  Air.  Sleep.  At the next level are safety needs - the need to know that you and all that you care about are safe.  At the next level are psychological needs.  Love.  Friends.  A family.  Above that, you can see that the hierarchy gets more complex.

Maslow's theory states that if the needs at any level are not met, a person cannot achieve the contents of the next level.  So, for example, if you are starving, you will not be able to achieve any sense of safety or security - because you can't even be secure in your most basic needs.

Think back to what you just imagined.  You aren't getting enough food.  You aren't getting enough sleep.  You're getting no intellectual stimulation or human contact.  Your environment is not clean or sanitary.  You are at the mercy of whomever happens to be tasked with keeping you alive (for now).

Would you know how to love another person?  Be in a family?  Be a friend?  Would you know how to trust that when you lay down at night, you'll wake up safe?  Would you believe, when you ate, that there would be more food before that gnawing pain in your stomach could take back over?  Could you be certain of the motives of the people around you?

I don't think I need to answer that for you.

Like anything, it is a process.  A person must become secure in those first needs before learning to achieve the next level.  When a person past infancy displays an inability to be secure in even their most basic needs because they have been in an environment of deprivation, we call this 'institutionalization'.

It's not just a word.  It's lives.  It's people.  It's something I've seen with my own eyes.  And it doesn't go away overnight.  You don't wake up one morning, never having had your needs met in your life, and then wake up the next morning confident that everything is going to be just A-OK, no matter what happened in those 24 hours.  When a person who has been institutionalized is removed from that environment... well - think of it like refeeding syndrome - many of us know what that is.

After the concentration camps were discovered by liberating troops at the end of WWII, well-meaning people rushed food to the starving, skeletally thin prisoners.  Most of them hadn't seen anything resembling a meal in months, maybe years.  They did what anyone would do, what is human nature to do - they ate until they could eat no more.  But their bodies had fallen into survival mode over those months and forgotten how to process proper nutrition.  The sudden rush of nutrients overloaded their frail bodies, and in that moment it was discovered that food can kill a starving man.  Beginning to feed someone who has been in a state of starvation properly again must be done very carefully and slowly to avoid overloading the system.  Refeeding Syndrome, as it's come to be known, is still a very real concern with orphans and people in developing nations all over the world.

But whereas actual physical starvation is linked to refeeding syndrome, institutionalization (essentially psychological starvation) can be linked to a sort of 'emotional refeeding syndrome'.  Too much, too soon, overloads the senses and causes a person to do whatever they can think of to sooth themselves.  For people who have been institutionalized, this can be a whole host of behaviors.  Rocking.  Self injury.  Lashing out at others.  Yelling.  Hand flapping.  Kicking and screaming.  You name it.  These are what we call 'post-institutional issues'.  They're the behaviors a person exhibits when learning how to go from an institutionalized environment to a different one - perhaps a family.  They're a period of transition that sometimes subsides quickly and sometimes has lingering effects for a long time.  They're not insurmountable.

Imagine emotional starvation as visible as physical starvation

Consistancy is key here.  Look back at Maslow's Hierarchy.  Start at the bottom.  Anything above that first level is going to overload the person and cause the behaviors I mentioned previously (commonly called 'stimming', short for self stimulating) because they just don't know how to handle it.  That doesn't mean they shouldn't be offered those things - love, security... it just means that when they're given, expect a different response than what you would from a person who has not been institutionalized.  Most likely, the person will stim at first.  Maybe for a while.  Keep working.  Re-feed them that affection slowly, over time.  A starving man was never returned to perfect health in a week.

Why am I posting this?  Aside from the fact that it's been on my mind, I feel that it's key to understanding international adoption, particularly of children with special needs, who have often been the most deprived.  And understanding the issues related to adoption is absolutely vital to ensuring a positive outcome for everyone involved.  There are families, people out there, who, like myself a year ago, have just discovered the orphan crisis - maybe because of all the press involved with the Russian adoption ban right now.  They can only think one thing - 'we want to help'.  And that's wonderful - we need people who want to help!  But from my own experience, I know that first 'want to help' instinct is often less realistic than it should be.  It is this that creates a false image of what adoption is like in people's minds and leads to disappointing experiences.  You can't say "I want to adopt a child with down syndrome" and expect to just get a child with down syndrome.  You can't say "I'd love to adopt that little girl with hydrocephalus" and only expect to deal with hydrocephalus.  You have to realize that institutionalization is a part of these kids now, you have to have realistic expectations based on what they've been through, or you're doomed to be disappointed.  You have to be prepared to deal with the whole gamut of institutional behaviors, to commit to 're-feeding' as long as it takes.

I'm not saying to second guess a desire to adopt - never.  I'm just saying, do your research.  Read some blogs.  Talk to some families.  Meet some friends.  I bet there are internationally adopted children near you - for over a year I had no idea a Reece's Rainbow family was living right down the street from me!  Build a support system, so that as issues arise, you'll have someone to go to for advice.  Find out what resources are available in your area and how to get them.  You'll learn a lot, you won't regret that you did it, and you'll be that much more prepared when you do decide to take the leap... and it will make your experience all the more positive.  Everyone wants a happy ending, but in real life, prince charming (or adoptive mom and dad) don't just come along and magic everything better in an instant.  Happily ever after doesn't just happen.  We have to make our own happily ever after, and it starts with a solid understanding of what you're going to deal with on the other side of your adoption.

And for those of us who haven't adopted yet, like myself (and listen to me preaching on institutionalization.  Rest assured that I'm not completely ignorant, even though I haven't crossed the ocean myself yet), we need to be prepared to support those families as they come home and 'de-institutionalize' their children.  A sympathetic ear when a friend's day has involved WAY too much poop.  A shoulder to cry on when a diagnosis the parent wasn't expecting is handed down.  A meal dropped off so the adjusting family doesn't have to cook.  Help around the house so the parent's focus can be on the child.  A simple card, note, message, to say, "I'm thinking of you, I'm here for you."

They say it takes a village to raise a child.  Find your village.  Get to know the ins and the outs of living there.  When it feels like home... move in... and your village will be there to help you through the thick and thin.

Happily Ever After is out there... you just have to work... and work hard for it.