Wednesday, October 28, 2015

what kind of day has it been

It was mid-summer, about two weeks after we admitted our younger son to a therapeutic boarding school, when my daughter, older son and I visited her psychiatrist to increase a daily anti-anxiety medication and ask for a renewal on an emergency anti-anxiety medication so strong that it’s normally prescribed only for adults. After lunching at a favorite restaurant and wandering around book and toy stores I realized that my daughter was showing signs of increased agitation and resistance to reality (flapping, dancing, voicing sounds not words, singing directly to non-existent people, and repeating the same question phrase multiple times).  In short, it was a fairly typical day in our life, except for being down a kid.

By the time we left the second store, I was working on escape routes.  Trundle-rushing the kids back to the car, I opted not to hit the public restroom figuring that there was no way I could simultaneously wipe and corral my increasingly unpredictable child.  Instead, I formed a plan to get to the pharmacy ASAP in hopes that a dose of the emergency meds would head off this manic episode, just as it had helped the fourteen other times we used the medication in the past two months.  Apparently, 14 is the maximum number of these pills we can have at any one time.  Because, you know, there’s a fine line between “psychiatric emergency” and “every fucking day of her quickly crumbling life.”

Once in the car, she started in earnest.  After showing physical frustration and vocalizing, her next step towards complete mania is usually paranoia. Like the gentle slide into quicksand, I was accused of loving my son more, of buying him gifts because I wanted her to run away, of only liking him, of letting him always call the family shots, of throwing away her other brother, and a host of other slings and arrows.  It was not the first time I wished she was back in a five-point harness carseat.  She was rocking so hard the car shook.  As I drove, one eye on the road and the other in the fisheye mirror, I watched her unravel and tried to calculate possible vectors for shoes, hats, canes, and any other necessary object I had foolishly left floating around the car.  Half way to the pharmacy, as I played the scene forward, I imagined myself home alone with this child and unable to lock her in a safe space because she’s already torn down those barriers (physically, not emotionally, those are still fully and frightfully intact) and redirected us to the nearest emergency room.

Now my body was shaking, heart beating so fast my legs did the Humpty Dance.  In my mind, I begged her not to notice that we were no longer heading home.  Out loud I had rerouted my conversation from placating to abject mollifying, agreeing with anything she said no matter how preposterous and apologizing for all the implied sins I had committed as a mother, a woman, a person, a flea.  Mea culpa, my child, please forgive me for our family trip to Germany, I should have thought that through.

As we turned off the last major street towards the hospital I dialed 911.  The nature of my emergency?  “I’m traveling south towards the hospital with my son and daughter.  My daughter is in a rage and has a history of 5150.  Is there anyone who can meet me at the emergency room to help me get her in?” Well, no, that only happens in disaster movies and some seriously dated TV shows.  My life, all evidence to the contrary, is neither.  They did stay on the line with me long enough to hear my daughter’s continued raging.  It’s seriously funny how often I want folks to know that I’m not the one who’s crazy … while simultaneously despising that word like some hate “moist.”

At the hospital I pulled to the curb, told my son to stay put, and began the task of dragging my daughter into the ER.  Oddly enough, she did not want to go.  Her wrists locked in my hands, I pulled the two of us towards the building and the awaiting oasis of help.  The “swoosh” of the automatic doors sounded comforting enough, like the sound of the hold-back gates at Magic Mountain, but the interior left a little to be desired.  By which I mean that, other than other patients, the entire ER was devoid of human life.  No white coats, no blue scrubs, no ID tags of any kind.  So, I did what any sane mom would do in an increasingly dangerous situation and yelled.  “HELP!  My daughter has a history of 5150 and I need help NOW!”  

There are a few key words that can help smooth over pesky situations.  “Allergy” is one when dealing with waitstaff and the ingredients of menu items.  “Medical” helps when you’re convincing the roller coaster staff to let your albino child wear their sunhat.  “Rash” will usually get you to the front of the Urgent Care queue.  “5150,” the California code for involuntary psychiatric hold, is the go-to phrase when you’re alone in an ER holding a person with the sudden strength of Zeus and the intellectual abilities of an increasingly intoxicated Bacchus. (It’s a frightening situation, and one that does not require the parallel use of Greek and/or Roman god names, thankyouverymuch.)  It was amazing how quickly official folks came out of the woodwork.  Like I’d yelled, “Free beer!” at a fraternity.  Even the other would-be patients took notice and backed away.  Well, that could have been because my daughter was by then making sounds like a screaming banshee and I was struggling to keep her from harming me and those around us.  Did I mention she’s ten?  Dainty thing.  A sweet Inner Mongolian flower. 

After saying the magic phrase and summoning those with the power to help, the triage portion of our stay went fairly smoothly.  During the nurse’s kind questioning and under the gaze of three of her closest friends I was able to rearrange my daughter on my lap so that we sat in traditional safety hold fashion: My left hand on her right arm and my right on her left arm and crossed like a straight jacket, my legs twining around hers, my feet on hers so that the likelihood of kicking was reduced.  Believe it or not, this was a fairly effective hold until she grew tall enough to hit at my teeth with her head. Oh, did I not mention that we’ve played out this scenario, in increasing intensity, for the past five years?  Que era era.  

A hospital ID bracelet was strapped on my daughter and she promptly ripped it off.  You go, girl!  Then we crab walked our way, a symbiotic two-headed creature out of Mummenschanz, to the room somewhat dedicated to emotionally disturbed patients.  In addition to the requisite hospital bed, monitors, and single-use products this room featured a glass front and barely movable sliding door. Through the glass front, for the entirety of our five-hour stay, sat a series of men named Michael who were periodically called upon to forcibly keep my daughter in the room, this task made somewhat easier by both the immobility of the door and the comic methods my daughter employed for escape.

Not long after we arrived, but after a few rounds of mom-on-daughter UFC action, a nurse from the behavioral health unit came to do an assessment.  This is when I first heard my daughter’s specific plans for ending her life.  

(Let me stop here a moment and say: Finding humor in the raw absurdity of my life is the only way I survive.  That having been said, suicide is no joke.  When I was in high school, interviewing to become a peer counselor, I was told that a person who once tries to commit suicide is more likely to eventually die by their own hand.  It’s easy to dismiss suicide, and the epidemic of it, as a “permanent solution to a temporary problem.”  But, that grossly underestimates the prevalence and perseverance of mental illness and psychosis and grossly overestimates the mind’s ability to heal itself.  Though all three of my kids have told me, at various times, that they didn’t want to be alive anymore this was the first time any of them mentioned specific plans.  Another tip from the high school clinic: Ask about specific plans; the more coherent the plan the more likely it is to be carried out.  So, when my daughter came up with more than one way to kill herself, we all took serious notice.  Over time her father and I have also come to some kind of acceptance that this may be the way that she leaves this life.  To know us is to know that we understand suicide is a distinct possibility for at least one of our children, have accepted the fact of this possibility, and will make decisions for our children accordingly. End of conversation.)

During the interview, the nurse and I made the decision that it was time for hospitalization, to help my child through a time when she was clearly a danger to herself and others.  Though, the logic behind placing a small group of suicidal and/or violent children, all under the age of 12, together in one place somewhat escapes me it was at least known territory (her first hospitalization came six months before).  

The time between the decision to hospitalize and the actual hospitalization varies greatly depending on: If a facility has an opening, if that opening is appropriate for a pediatric patient, and if your child qualifies for their program.  Once all that is ironed out, you sign a piece of paper stating that your child is a “gravely disabled minor” and they are officially on a 72-hour safety hold.  Easy peasy!  

Then you wait for an ambulance. In our area, the closest pediatric facility is 50 miles from home.  Considering that I barely made it two miles with a raging disabled minor in the car, no one expected me to do 50.  No worries, this gave her enough time to try out a variety show of escape attempts.  First she rushed the door, only to be stopped by a Michael.  She tried that numerous times.  Then came the costuming.  The room was filled with rubber gloves, sheets, gowns both paper and fabric, masks of all variety, and a pillow.  Rubber gloves were employed to make it easier for her to escape anonymously.  No fingerprints!  A gown clearly indicated that she was a doctor, so two were put on.  Perhaps, she thought, if she could hide her face Michael wouldn’t notice.  Masks, blankets, paper sheets … she was a veritable mummy.  At each attempt, a Michael would stand firm at the door reminding her that her mother was in charge.  Right, because when I’m in charge the first thing I choose is for my baby to have a psychotic meltdown requiring handing her over to complete strangers for an unknown amount of time (though usually one week).  So much for being the decision maker.  

The last attempt was perhaps the most creative.  I had been holding her, off and on, in my lap (off when she was contrite, on when she was manic) for a few hours.  She figured that the Michaels knew who was in front and back, so she pulled a blanket over our heads and reversed our positions, coming out from behind me towards the door.  The fact that the blanket went with her, revealing me completely (ta da!), somehow escaped her.  

My son?  He came to the room some time in the first half hour, brought in by a very kind nurse.  He and I texted each other for another hour while my mom drove to the hospital to take him home.  “Sorry” appeared most often.  “I’m scared” only once.  Brave, brave boy. 

Near the end of our stay, my husband arrived.  It was then, five hours after leaving the mall, that I finally was able to go to the bathroom and do what nature intended … followed by wiping in privacy.  

Not much later the ambulance arrived.  They strapped our girl into a stretcher, bolted her in place in the back, and drove 50 miles to her home for the next nine nights.  We left the parking lot at the exact same time and followed the ambulance for about five blocks until we turned off towards an In N Out to buy dinner for what was left of the family.  Yes, there were milkshakes.

A recent study reported that folks who can find humor in even the darkest situations live about three years longer than average.  This is great news for us as we’ll need to work into our 70s to pay all the hospital, ambulance, therapy, and prescription bills.  Plus, there’s replacing the doors broken down in the name of mania, fuel and other transportation costs associated with visiting our daughter in the hospital and taking her to the innumerable follow-up visits with providers, and support for my now-insatiable Peet’s habit.   

What cannot be cost-balanced is the emotional toll it takes on the rest of our house.  My daughter has been hospitalized four times in the past 10 months, and every day is waiting for it to happen again.  I joke that I suffer from Pre-TS, present traumatic stress.  Unfortunately, some in our house are challenged with actual PTS and these lives are in balance every time we make the decision to say that our daughter is, in fact, a danger to others.

Mental health care in the US is woefully lacking, especially so for pediatric sufferers.  I churn through the options every day, knowing that we’re doing the absolute best anyone can for our kids and saddened by how short these efforts fall in addressing their needs.  

Folks ask, “What can I do?”  My only response now is, “Believe me.”

Believe me ... this ain't no joke.

Monday, February 9, 2015

don't ask; don't tell

Like clockwork, I arrive at my shopping every week at the same time.  Same produce market, same TJs, same staff shift … to the point where if “my team” isn’t on I’m a bit flustered.  At the produce market I use my limited Spanish to thank the checker, to ask her if she’s done filling a bag, to warn her about an open bag of oranges.  “Gracias,” “Listo con esto?” “Cuidado.”  She’s asked, more than once, if I speak more Spanish.  “No, no … un poquito.  Only un poquito.”

Today, she asked if she could ask me a question.  Usually, alarms go off; but today they didn’t.  “The little girl?” “yes” “She’s your daughter?” “yes” “The little girl?” “With the hat?” “Yes. 
“Is she sick?”

“No, no she’s not sick. 
“She’s just different.” 

So caught up in trying to parse through which aspect of The Blonde prompted the question (pale skin? permanent, large-brimmed hat?) I barely heard her explain that her son didn’t talk, then she gave him some vitamins, and now he talks.  “How old?  How old is your son?” “Eight.”

She wrote down the vitamin source (a website) and a product name (something with “Jr.”) and I thanked her.  Then, I sat in my car and cried.

The Blonde’s mannerisms are inseparable from The Blonde.  She is not She without the twirling and swirling, the vivacious vocalizing.  The Blonde lives in a world of her own creation, where today’s world may have different rules than yesterday’s or last week’s.  Something in the mix tipped off the cashier. She asked like she’d been working up the courage to, like she’s wanted to ask for a while.

Is she sick? I cried because the difference is noticeable, despite my desperate hope that my baby girl comes across as fine.

When The Blonde was first diagnosed with autism in late 2013 there was much rending of clothes and railing at the universe.  I mean, really, autism?  That’s big; not something temporary and curable like, say, the measles.  Aw. ‘Tis. Um.  Just saying it felt like a trap.

Even then, we knew she wasn’t simply autistic. For as many Big A markers she exhibited, there were an equal number of Certainly Not A behaviors and patterns. How many standardized forms have I completed where all answers were “YES” or “5 on a scale of 5” or “constantly”?  Looking at the numbers The Blonde has ADHD, ASD, RAD, ODD, and SPD; her IQ is above average; she is preternaturally verbal; she stores words like a computer. Yet, she has limited self-care abilities, does not understand even natural consequences, and insists that her brain holds all the characters she’s ever read and that they, not we, are the real world.

Is she sick? I cried because she may not be reachable.

Medications have been shifted and tweaked.  Timing is important.  She swallows without questioning. She can’t remember to take them herself.

Is she sick?  I cried because my daughter is dependent on mood altering chemicals simply to live without abject fear, and the violence that comes with it.

Tests have been ordered to explore her brain, her DNA, her wiring, her prospects. 

Is she sick?  I cried because there may be no diagnosis. I cried because there may be too many to fathom.

I’m sure that the word this gracious lady chose had more to do with my limited Spanish than her grasp of English.  Or, perhaps, with her idea of what her son faced every day as a non-verbal eight year old. 

Is she sick?  I cried because the adjective was an option.

No one ever asked before.  I was never forced to tell.  It allows us to live in a world of euphemisms.  Our girl is “tactile,” “high energy,” a “kinesthetic learner.” The first psychiatrist obscurely described her as “not neurotypical.” Our girl is “working on it,” “doing well today,” “full of life and love.” Our world is filled with bending not breaking, ignoring unwanted behaviors instead of tackling them head on, wondering if today is the day … if today is the day she finally connects.

Is she sick?  I cried because I’d never allowed myself to think it before.

It’s a perfectly plausible explanation, so simple when someone else says it. Others must have assumed so already: Doctors, therapists, teachers, her friends, ours. So many vacations cancelled, jobs declined, play dates unscheduled. So many excuses piled high around our fortress.

Is she sick? I cried because our normal is living with the question … unanswered.

Tuesday, July 29, 2014

help is a four legged word

Trapped in his wheelchair, Walt (no real names here) is quiet during the daylong event.  He acknowledges no one, not even his wife who regularly places her folding chair back and to the left of his transport when we sit for lectures.  As the group travels around the buildings and grounds, Walt is always hiding mid-pack.  He asks no questions; seeks no clarification.

Near the end of the day, each of us is paired with a young dog whom we are to take through their paces (“sit,” “down,” “let’s go”) and correct them (“don’t; sit”) when they are not responsive.  Silently rolling to the front of the room, Walt grabs ahold of his dog’s leash.  It’s as if he’s opened a box, peered inside, and found his fifth birthday party: Walt’s joy fills the room.  Looking down at his dog he commands, “Francisco, sit” and Francisco does.  “Good boy” croons Walt to the black Labrador who is now looking at Walt as if he were cheese-studded bacon, “Good job.”

As part of our ongoing search for “that which will calm our daughter” we discovered assistance or service dogs.  “Service dog” is a general term for a dog trained to do a specific set of tasks for a specific person.  Seeing eye or guide dogs are service dogs, as are hearing dogs and dogs who open doors and pick items off the floor.  There are also service dogs who alert their humans to oncoming seizures or drops in blood sugar; this is a sensitivity they attune to after placement.

In November of last year, we applied to Canine Companions for Independence (CCI) for a skilled companion service dog for Princess Pea.  After many steps in the process, at each of which we could have been released from the program, she and I made a trip to the local CCI regional training center in Santa Rosa, CA, for the final step in the process: Our personal interview and tour.

Twelve potential recipients, and their support entourages, were present during our time at CCI.  The day included a tour of the campus, a history of CCI, the process by which a puppy becomes a service dog, and (the pièce de résistance!) actual touching of and working with the dogs.  The day ended with a one-on-one interview. 

From their website: “Canine Companions for Independence is a non-profit organization that enhances the lives of people with disabilities by providing highly trained assistance dogs and ongoing support to ensure quality partnerships.

In part, our application to CCI read:
[Her] life has been one of upheaval and uncertainty.  First with the life transition of adoption, and then with the continued intensity of her sensory input and processing as a result of her autism.  She is mainstreamed at school and doing well academically, but must be managed at all times with various interventions, pull-outs, time-outs, and 1x1 attention.  She comes home exhausted and overloaded.  She has no friends.   
A service dog would help [her] manage the anxiety brought on by autism and low vision.  It would aid her in redirecting when she begins to stim, self harm, or grow too intense for companionship.  A dog would be a calm, consistent, reliable, unconditional source of support and affection.  It would help our family regain some balance.  It would help her dad and I find a place of peace and safety.  

CCI has a paid staff of about 65, mostly dog trainers and fundraisers.  Volunteers handle the rest of their extensive operation.  Recipients do not pay for their dog or that dog’s training.  CCI relies on donations to provide fully trained dogs as well as accommodation for the entire family and some meals during the two-week Team Training.

Each year, CCI volunteer Breeder Caretakers foster mama dogs in their own homes.  On average, 700 puppies are born each year.  After the puppies are born, weaned, and socialized (at about eight weeks old) they are all sent to the main training center in Santa Rosa for a vet check, spay/neuter, microchip, and vaccinations.  Next, they are sent out all over the US to volunteer Puppy Raisers who begin the basic training and housebreaking of the dogs. At 14-16 months, the dogs are sent to one of five regional centers for advanced training.  During the six months of advanced training, the dogs learn more than 40 generic commands as well as how to work around mobility devices (wheelchairs, walkers, canes).  Some dogs are moved into the Hearing Dog program.

After advanced training, the dogs are paired with their recipients for team training, an intensive two-week period during which the recipients learn how to take care of their canine companion.  On average, 250 teams are created each year.  There are currently more than 1900 active CCI teams. Dogs who do not make it to team training (for health or temperament reasons) are adopted, usually by their puppy raiser or a CCI staff member.

When we first started down the service-dog path, I was reluctant to throw my hat in for a full-breed dog since I find that mutts are so generally wonderful and available.  CCI breeds Labradors and Golden Retrievers, and 90% of their dogs placed are a mix of the two.  Still, the image of a dog “made for me” found me cringing.  For this reason alone, the visit to the CCI campus was an education.  These dogs are working dogs, bored stiff by inactivity.  They thrive on following their leader and being praised for good pack behavior.  As I watched each dog with each member of our little ensemble, I marveled at Lila’s ability to walk right next to Chad in his wheelchair and at Phoebe’s insistence when lying exactly to Sally’s side. Watching the dogs “get,” “visit,” turn on and off a light (“light” and “switch”) and open doors was incredible.  And, they knew it too. 

At the end of the day, Princess repeated how much she wants a service dog.  She told the trainer at our private interview, she told me at lunch, she told anyone who would listen.  At this point, we’ve done all we can do: Filled in all the forms, sent in letters of support from our doctors and therapists, and cuddled uproariously with Francisco the wonder Lab.  Now, it’s up to CCI.  If we are placed on their waiting list, we could wait up to two years for our match.  CCI prides itself on connecting the right dog with the right human.  We should know before school starts this August.

To make our wait more meaningful (whether it’s a week for a negative answer or two years for a dog), I’ve decided to dedicate all of my upcoming race-walk training and races to CCI.  If you choose, you can donate via my personal webpage:

If Princess doesn’t get a dog, someone worthy will -- many someones. The page will remain active while I train for the US Half marathon in November 2014, the Big Sur Marathon in April 2015, and beyond.   The openness on Walt’s face when he led Francisco, the joy in Chad’s laugh when the dogs misbehaved, and the determination on Sally’s face as she struggled through the effects of her stroke just to lead Lila around in a circle will remain in my heart. 

At CCI, HELP and LOVE are four-legged words. 

Sunday, July 27, 2014

a letter for my daughter, but really for me, about autism

Princess Pea,

Mama is in the middle of the road, so very close to your diagnosis and struggling to move on.  When we adopted you all, we knew it could mean a child in our home for a lifetime.  Well, we said we knew.  We didn’t.  And, now that I’m looking at this scenario up close, I’m scared.  Scared that I can’t do what I said I could do, scared that you’ll notice, scared that you’ll care.

Prescience is nicknaming you Princess Pea because every little thing seemed to bother you when you were a baby, only to find out at eight years old that you are autistic.  Or, maybe that’s coincidence or callousness.  Any way, it’s clear now that all the peas really did bother you, all those sights and sounds -- so many sensations for an already overwhelmed mind. 

Perhaps we should have named you “Patience,” the irony would have been so deliciously, sickly bittersweet.

As you grow, I watch the socio-emotional milestones you meet at a glacial pace and know how hard you try… oh, how hard you try.  And, just as attentively, I watch the patterns you refuse to release or release yourself from.  The mess I clean up after mealtime, the volume when you speak, the endless picking and squishing and you always trying to hide it all.  As if it weren’t all a part of you.  And it is: All a part of you.

Living with your autism has meant making decisions I never thought I would be forced to make.  Autism, as you well know, is a world of overwhelming anxiety and endless frustrations.  Medications help, and we choose to use them.  I could say that we choose to make you take them, as if they were impacting only you.  But, the truth is that our family would cease to function if we couldn’t have this clearly effective way to manage your anxiety and anger.  For you, every emotion is physical and the meds help control their vector, their force and direction.  The meds allow us to take vacations. They keep you in school, even though we aren’t supposed to talk about them there.  The meds allow you to sleep through the night.  Without the meds you were “uncontrollable,” “loud,” and “clingy.”  Now, you’re “energetic” and “enthusiastic.”  For this we’re “happy.”

There are also the restrictions, places we can and cannot go and activities we choose to hold you from.  Events we dare not attend.  This is a difficult for all of us; your brothers don’t have the same reactions, the same sensory needs as you, yet are forced to live a life that is most comfortable for one member of our family.  “Fair” has taken a permanent vacation.

Where did it come from, this processing difference of yours?  Are either of your first parents autistic? Does depression run in your family?  Perhaps everyone’s a genius.  These are all markers for the potential of autism.  What I believe, after reading and researching and looking and listening, is that your autism is the wholly organic result of the desperately under-stimulating environment of your infancy.  Orphanage care, I’ve come to realize, is the gift that keeps on taking.

You asked on Saturday if animals could be autistic.  And, that pushy gentleman creeping on our conversation decided to ask Siri instead of listening to my answer: Animals are, by definition, autistic.  They have only a now; learn tasks by repeated, specific example –completely dependent on time and place; and experience all emotions physically. Scientists say the pre-frontal cortex (PFC) makes us human, and most animals have PFCs of little strength.  Autistics, too, lack the strength of connection between the PFC and the rest of their brain.  No one is in charge to tell the brain what it’s just experienced.

This is why you see detail so well, why the difference between now and then, this and that, here and there are so acute for you.  “You didn’t wear that shirt this morning” isn’t a casual comment; it’s a statement of discomfort. There has been change. “This isn’t how we drive to Peet’s.”  “Why aren’t we using the other plates?”  “But I wore something else last time.” All of these, and more, are markers of a growing anxiety … signs to me that I must slow time again, make it all OK for you, find a place of sameness so stagnating I cannot breathe in its thick air.  It’s where you are comfortable, so I go.

At some point, I must have flipped a switch; moved from mom to caretaker.  This hurts more than I have words for, because you deserve both and I yearn to be your mama. I just haven’t figured out how yet. Your mama tries hard every day to accept your autism and live with unbridled joy … but cannot seem to reach this nirvana.  You see, my girl, I love you with all my heart and soul and yet I regularly wish I didn’t have to live with you. It hurts to not want to live with you, the totality of you.  It’s as if, maybe, I don’t really love you if I don’t love your autism. And, let’s be honest, autism’s a tough disorder to get all cuddly with on a regular basis.

So where does this leave us today, right at this moment?  I describe you as a three-year old trapped in a nine-year old body.  We let down our guard when you are so intelligent it takes our breath away, when you can manage physical and emotional challenges with ease, when you talk clearly about a philosophy only sages and old masters comprehend.  It is only when we next find you painting the bathroom with nail polish or flushing a book down the toilet that we are maddeningly brought back to the circular truth.  No matter what you are or what you have or where you sit or when you speak, no matter why it all happened or when it will change or if it will change, we must parent to your most pressing needs.

I am at a crossroads: Refusing to accept what might be the inevitable (because nothing, not one thing, that I’ve ever touched has gone as different from imagined as this has) and understanding that, by not accepting, I’m making it worse.

And, I love you.

Friday, February 28, 2014

Trans-Racial International Adoption from an Orphanage/Foster Care System, with an emphasis on China (part I)

[the three parts in this tome were first written by me in 2008 for the now-defunct blog zarfing sunshine.  Since I'd like to talk about the lasting impact of orphanage/institutional care here at the life waiting, I'm reposting here with my very own permission.]

December 7, 2008

Where to start: We thought we'd have biological kids with no issues and instead are home with (soon) three trans-racially adopted children who were born with medical or genetic conditions which will impact their entire lives.  Ta da!  Where do I buy a ticket.

The information below is what I have gathered, researched, and distilled from countless sources on adoption, attachment, trauma, and race.  The presentation stems from a conversation (a five-hour conversation) I had with my mother 18 months after our first child came home.  For those 18 months, we were living in a reality so foreign to our expectations, so all consuming, that we didn't much communicate with anyone who didn't Get It ... who didn't have a traumatized, wary, beautiful child of their own.  I have talked about loss on this blog.  We were not the only ones whose expectations were not met.  I figure that our need to therapeutically parent our children has resulted in more loss (emotional and financial) than we care to quantify.  Because of this, we are keenly aware of, and grateful for, those friends and relatives who have stayed by our side and who continue to support our family vision.

There are many reasons why folks entering into an adoption may not understand the complete emotional impact of their future child's former life.  When we were considering adoption we did a fair amount of research on countries (including the US) and programs with various agencies and groups and never once were offered information on attachment, grief, or trauma.  Though it is every individual's responsibility to understand the contracts they are signing, and nothing forgives our initial naivety about international adoption, everyone along the chain should claim responsibility for the health of the children and families involved.

[Before I go on: I have thought through the wisdom of posting this now, while we wait for China to approve our final adoption.  As you read through these posts, you may feel I am placing blame or pointing fingers at governments and countries of origin.  Not so.  Humans are biological beings, driven by DNA to need specific input for growth.  No one country, or one childcare situation,  has a monopoly on good or bad caretaking.  I know of children who are not attached to their biological parents due to ineffective parenting skills or in-utero drug and alcohol use.  It has twice been our humble honor to adopt a child from China, and we will be forever grateful that the country entrusted us with their children.  I truly believe that, in the majority of cases, governments are doing the best they can with the children left to their care.  My mother once asked why China, with its great wealth, could not care for more children better.  I wondered, as she asked, why America (with its great wealth) cannot do the same. Why American elementary school teachers do not earn a living wage, for example.  Why newborns continue to be left in dumpsters.  Why America has the highest infant mortality rate of any other developed country on the planet.  The short answer is: They can, they simply choose not to.  I do not understand the reasons, and I still do not place blame.]

International Adoption into the United States is a business.  The home study agencies, placing agencies, facilitation agencies, and t-shirt producers are all in the business of making money. Relatively few are non- or not-for-profit.  Because everyone along the entire chain needs to be paid for their work (just as every doctor, midwife, anesthesiologist and RN needs to be paid after you give birth in a hospital), the entire system relies on maintaining a large enough group of people who are willing to make a cultural, emotional, and financial (there is no insurance co-pay for adoption) leap that is only possible when the destination is presented as attractive and safe.  This is why it is rare to read about the difficulties in adoption unless you're in a position to need that information (e.g.: your new child intentionally hurts the family pet then you look up "Nancy Thomas").

When we were beginning our third (current) adoption I did more research into the US foster/adopt system.  Because we had a child in mind, my search parameters included kids in our waiting son's demographic and excluded infants of any race.  As you read what I have to say about the impact of pre-adoption care, keep in mind that this deprivation and trauma is not exclusive of back-woods, under-financed orphanages in third-world or emerging countries.  In the US, the bulk of the healthy (no birth conditions) seven-to-twelve year old boys I saw available for adoption were described with euphemisms like "would be best as the youngest child in the household" (possible meaning: acts out sexually or abusively), "very active, loves the outdoors" (ADD, ADHD), "is looking for a strong father figure" (defiant), and "needs someone willing to advocate for his needs" (FAS, PTSD).

Luckily, we've learned. We've researched, read, listened, listened, listened and found someone to talk to specifically about our children's emotional needs.

How does it happen?  How do children born on this beautiful and lush planet become angry, withdrawn, beings intent only on emotional and physical survival? I'm writing here of three specific topics: Control & Anxiety, Trauma, and Grief and have divided the information in to three parts: Before You Meet Them, How They Respond, and How You Can Help.  This post  will only cover the first part.  It is important to remember that all experience lies somewhere on a spectrum.  Not all orphanages are bad ... or good.  This series will talk about what I consider to be the "average" experience.

Part I: Before You Meet Them

Webster's defines trauma as "a disordered psychic or behavioral state resulting from severe mental or emotional stress or physical injury, an emotional upset."  In China, as in many countries participating in international adoption (IA), children are housed in group care facilities we refer to as orphanages.  In China, the children are technically foundlings, children found after unknown parents have abandoned them.  Regardless of how well the children are treated in the orphanages (and some are treated well), there can be a reasonable assumption of "emotional upset" if not "severe ... emotional stress" associated with the abandonment and institutionalization of a pre-pubescent child.

Grief, "deep and poignant distress," can also be assumed.  Distress comes from the child's losing known faces, sounds, smells, tastes, and both physical and emotional feelings.

Anxiety ("painful or apprehensive uneasiness of mind usually over an impending or anticipated ill, fearful concern or interest") is the result of this grief/trauma combination.

To understand how these three forces can work together in a small body, one needs to first understand the attachment cycle.  For most biological parents, attachment happens without any planning.  For adoptive parents, a conscious effort must be made at every interaction with their child until that child is healthfully attached.  Children attach with people when those people satisfy basic needs for the child.  The pattern is rage (crying, screaming, quietly searching with hands or mouth), satisfaction (diapers are changed, milk/forula is given, blankets are replaced), resolution (body is comfortable, tummy is full, body is warm).  By repeatedly having their needs met by primary caregivers, a child emotionally connects with and trusts the folks providing the resolution.  Ultimately, the child becomes healthfully attached.

A healthfully attached child believes three things: they are lovable, trust in their parents is wise, and help is available. In short, these are kids that everyone wants to be around. There is a spectrum of attachment, from this healthy attachment to severely unattached (RAD -- reactive attachment disorder -- falls on this end).  Along the middle are diagnoses like: insecure, avoidant, ambivalent, anxious, and disorganized.  Children who do not have a healthy attachment to a primary caregiver are at risk for never forming attachments.

There are many reasons why children who are in institutional care (including foster care) might not have the attachment cycle completed.  (There are also many reasons why a biological family might not form healthy attachments, but that's not my area of focus.) In most orphanages, children are fed and changed on a schedule ... not when they're hungry or wet.  There are rarely enough caregivers to give one-on-one attention to each of the children.  And, frequently, the nannies are young and untrained.  In addition, the child:caregiver ratio is so disproportionate that an institutionalized child almost never learns what it is like to live in a small unit, a family.  What they do learn, and quickly, is that people in a position to satisfy needs come for a short time (an eight-hour shift, perhaps) then go.  There is no consistency.  Older children learn that if nanny tells them something they don't like (don't go on the stairs, no hitting, etc.) it's only a matter of time before nanny leaves and another takes her place

In short, the children are not learning that it is safe and wise to put their trust in adults, they do not learn that help is available to them without question.  Because of the uncertainty, the children are at risk for developing low self esteem, figuring that if they aren't worth the effort to satisfy their needs, they surely can't be worth much at all.   Infants are especially vulnerable because of their size and inability to meet their own needs.  And, if an infant grows into toddlerhood in a situation where needs are consistently unsatisfied, their worldview can become fairly bleak

Institutionalized children also learn to level out their emotions.  Crying doesn't work when they're wet or hungry, so the skill is lost.  On the other hand, children who are consistently happy and engaging are most likely to be fed, changed, held, and spoken to.  A star is born.  But, this star has learned to be charming to get what they want at the same time they're learning not to completely trust adults. And, they've learned to be indiscriminate with the cuddles they use to get necessities.

As they become more anxious about having their basic needs met, a child's anxiety begins to skyrocket.  As infants, children have a twenty-minute anxiety window before fear and the related chemicals (cortisol especially) begin to, essentially, corrode the brain and shut down the system.  In childhood, the brain creates tens of thousands of connections each day, enabling us to learn, grow, and sustain our own life.  Cortisol acts as an acid wash in the brain, breaking apart those precious connections.  Once the connection is lost, either the skill is lost or it must be relearned at the expense of learning a new skill or making a new connection.  Imagine, then, what has physically happened to the brain of a child who was left by their biological parents and found an unknown time later, then brought to group living situation where they eventually learned to not cry.

Also inherent in most group care situations is a fair amount of physical restraint.  It would be untenable for a staff of 10 to manage 30, 40, 50 infants if each had freedom of movement.  In infancy, most children are kept confined to their (usually shared) crib.  As they age, they are frequently put in "walk abouts" for long periods of time or stationed on small toilet chairs as a kind of basic potty training.  In the winter, they are bundled so thickly they can't move their limbs.  In the summer, hands are tied down so they won't pick at mosquito bites.  Most children miss one or two cognitive and physical developmental steps.  Many never learn to crawl, and go straight to cruising on their toes.  Unfortunately, crawling (the coordination of four limbs for syncopated forward motion) is just one of the ways the brain learns to wire itself correctly.  Remove the skill and you've removed the brain functionality.  Stimulus, visual and tactile, is at a minimum.

There is also outright physical and emotional abuse at the hands of those the children trust to care for them.  They children still learn to trust, and to love, their abusers.  But, they also learn that adults will use their superior strength to hurt.

Food is not plentiful.  Clothing and toys are shared.  Rooms are unheated.  In some countries, many of the kids aren't even citizens, they are non-entities living at the grace of the folks who donate money to their orphanages and foster homes.

Have I covered everything?  Abandonment or relinquishment by those who were supposed to love them forever, check.  Emotional trauma, check.  Low-stimulus living environment not conducive to mental or physical development, check.  Abuse at the hands of their caretakers, check.  For the kids who grow mature age within the system: An unhealthy sense of omnipotence, check.  Deprivation.  Loss of individuality.  Let me know if I've missed something.

At the end of this cabaret of emotional strain, the new parent arrives.  What is the most phenomenal day of our life is simply another, unwanted upheaval for our children.  They are taken away from every sense memory they have.  They lose everyone who is important to them.  Gone are the cultural norms they've spent nine months ... two years ... eight years perfecting.  In most cases, they are removed from folks that look like them and placed in families where they are the only.  Unless they are of legal age, they do not make the adoption decision for themselves.  The path of their life takes a most dramatic turn and they have no ability to make impact.  They are powerless.

Or so it seems.