Our Journey to Understanding Ellie, Part 2

"If you take a bottle of Coke and a bottle of water, then shake them both up ... you open the two bottles up  in different ways because what is inside the bottles is different.  So it is with our kids."  
Illustration by Jim Harlow, Texas Christian University, presenter at Empowered to Parent.




I'm going to try to pick back up from my previous post and try to 'briefly' share the highlights of what we've been learning about seeing the world through our daughter's eyes and understanding the filters through which she interprets new experiences.  Some of you might smile and nod, "Yes!  I knew that!  Glad she's figuring it out too!"  At the end, I'll share a link to where you can get your hands on the sources of this information.  I want to preface this by saying that these are my words and summaries.  I may have some inaccuracies based on misunderstandings and you should definitely go to the source before citing me! ;-)

"Way back when", early in the stages of adopting Ellie (about 6 years ago), we were required to read a series of books dealing with the unique parenting needs of children who've come from orphanages/hard places.  It's a "must" because everyone should go into adoption with their eyes open.   I admit it was scary at times, and also a bit discouraging, but I think a large piece of your heart thinks that it will be different with your child;  that they'll be the "resiliant" one, whatever that means.  At the time, aside from our social worker, we didn't have anyone to share those new concepts with so I know a lot of it went in one ear and out the other.  I didn't reasonably digest it all in the same way one grasps onto a concept when it's kneaded out in group discussion and/or immediately applied to a present situation. It was a box to check off on the task list and was done.  Now that we are 'on the other side', information like this has completely new meaning.

_____

In God's original design, babies were to be born to parents happy about their arrival, experiencing good pre-natal care (low-stress, good nutrition, no exposure to yukky enviromental/chemical stuff that would impair healthy development, etc.).  Then, once that child was born, there was at least one consistent person there to hold them, pat them, feed them when needed, attend to illness, provide comfort when anxious moments would arise, provide consistency and security, etc.  In the process, a trust cycle was established, and the child was empowered to move on to higher levels of brain functioning (i.e.cognitive learning).

In our daughter's case, she very likely experienced a stressful pregnancy (from what we know about the circumstances surrounding her birth), then was left in a hospital for about 6 weeks until she was transferred to an orphanage 3+ hours away, never to leave that building for 17 more months.  We know from her records that she endured a serious sickness that afflicted the entire orphanage (2 of the 25 children passed away), not to mention all the other discomforts from developments like teething with no one to carefully monitor her temperature or administer baby tylenol or Oragel.  She only left her crib for a brief clothes changing 1 time per day and a few diaper changes in between.  She was even fed in her crib.  Her caregivers worked odd, random days (2-24 hour shifts per week -- we could never predict from day-to-day who we would see when we entered the orphanage those 4 weeks).  And all the long, long, hours  in between she would lay in eerie silence or listen to the long, loud wail of a child's cry that could not be comforted, echoing off of tile floors and concrete walls.

She developed what researchers call "survival brain".  Survival brain is protective and defensive. It perceives attacks and triggers automatic responses. It operates in extended periods of "fear mode."  When one encounters a stressful situation (say an oncoming car swerves across the center line and is coming right at you), the brain releases neurotransmitters (epinephrine, norepinephrine to name a few) that put our brains at high alert to navigate the situation and survive the episode in tact.

In a driving situation like I described, all your attention is focused on the object coming at you and how to avoid the impending collision  -- you are not thinking about what you want to eat for supper nor are you able to answer a question in the moment like, what is the capital of your home state or what was your grandma's maiden name.  When the fear center of your brain is active, all of your other thought processes go out the door. No brain can operate in survival mode for extended periods of time without incurring deterioration.

When babies are upset and agitated, a parent rocks, strokes, or pats while speaking soothing words in the upset child's ear.  In doing so, comforting gestures help their brains release serotonin, an 'antidote' to the excitement chemicals which are released by the triggering episode.  Serotonin thus helps the child calm down.  As the child grows and learns about how to navigate the ins and outs of everyday life independently, they become more self-regulating, needing the parent less and less. In Ellie's case, she wouldn't have had an external regulator, someone there to help her come down from anxious moments.  To get the comfort and soothing she needed, she started rocking.  (One of the 'light bulb' moments for me was learning that repetitive motion triggers the brain to release serotonin.)  For her, rocking helped her deal with the elevated levels of neurotransmitters in her brain.  (Hence, Ellie's OT's recommendations for swinging in a swing or hammock or rocking in a chair to calm Ellie down from an agitated state.)

In cases of chronic trauma, abuse or neglect, the brain (more specifically, the fear center) stays on hyper-alert.  As a result, portions of the brain never become active and overall brain chemistry is affected. At the seminar they showed us side-by-side brain scans of 'typical' vs. institutionalized children; likewise they showed us urinalysis charts of levels of seven neurotransmitters in a child from a 'hard place next to a healthy/typical child -- the differences were shocking (almost two standard deviations).

Imagine a child who doesn't know when she is going to eat next, where she is going to sleep next, if something he says will trigger a violent attack (or no response at all), or if his caregiver today is not the caregiver he will have tomorrow. You have a child living in a constant state of stress.  Schoolwork, peer relationships, appropriate behavior -- none of these issues are important when basic survival and self-preservation is the utmost concern.  It shouldn't come as any surprise that many of these children are significantly developmentally behind their chronological age.  In 2-3 year olds it's exhibited as behavior dysregulation.  In 4-6 year olds it appears like ADHD, in 8-10 year olds it's manifested as agitated depression, anxiety, or depression. As an untreated individual ages, it's exhibited as agression and serious psychological disorders.

When most children are adopted (particularly if they never had a primary caregiver during their first three years of life), it takes time for that child to develop trust and learn how to receive love -- it's contrary to anything they have ever experienced because the instinct to distrust and look out for oneself is rooted in their pre-memory experience.

In looking back, our first year at home with Ellie was largely focused on two things: overcoming her physical deficits (i.e. building core strength, mastering gross motor skills, treating vision issues, and overcoming oral aversion) and transitioning to her new "normal" with Nathan and I as her parents and all that that meant (consistency, routine, social interaction, new foods, etc.).  Her second year home witnessed advancement in  her verbal skills which opened the door for two-way communication.  Her third year home she started demonstrating attachment, calling us Mommy and Daddy (finally!) and exhibiting for the first time a fear in being alone.  These were all building blocks which were necessary before she could really start the process of healing.

One of the simplest, yet most profound statements we learned at the ETP seminar was this: THE ROOT CAUSE IS RELATIONAL.  The lack of relationship has devastating affects on a child because we were created to connect -- with others and with God.  Ellie's physical needs were being reasonably met -- she wasn't malnourished, she wasn't living in squalor (though fresh air and sunshine would have been nice), and she was fed regularly.  The piece she was missing was the social/emotional component and has had major ramifications for her. [I think there is a whole area worth exploring here regarding the correlation between the physiological effects of a broken relationship with God and the physiological effects of a broken parent/child relationship.]

No discussion of this subject can take place without raising the issue of discipline.  But discipline is a very loaded issue in adoptive families, especially when trust has yet to be established. Discipline, if done incorrectly, can potentially set back or damage attachment. What further complicates discipline is the responsibility of the parent to determine whether a behavior is truly willful or if it's simply survival.  Survival behavior is triggered by what researchers called "tripping episodes" and they may be caused by all sorts of different things -- a disruption in the schedule, a crowded room, hunger, or the child being told 'no' (which means a loss of control), to name a few.  Because the train on the track of their thinking process (to use their analogy) is already wobbly, it doesn't take much for the train to derail (which is manifested by a meltdown).  Consequences, lectures, logic, are all usually pretty ineffective at this point because the "Survival Brain" has been reactivated and logic doesn't prevail.

Tripping episodes with Ellie initially seemed unpredictable. Meltdowns were/are embarrassing and traditional "time out" would only deteriorate a bad situation into one worse, fast.  The physical separation from us and understanding that she could not leave the time out chair escalated into moments of terror for her.  Over the course of time, we discovered that she 'tripped up' more easily if she hadn't eaten recently.  We learned that the effects of food as brain fuel wane off after about 2 hours.  Providing regular snacks, serving meals on time, and having high-protein snacks available for times away from home (you should see my purse) would keep her blood sugar from dropping and her attitude more even keel.  What a difference this has made, particularly in learning!

We are glad to report that her 'good days' outnumber her 'hard days' and the meltdowns are less frequent (though we still have a ways to go).  We can't change her 'sensitivity' to certain factors, but now that we are aware of how her brain filters the environment, we can empower her through giving strategies for dealing with situations that might otherwise trip her up.  The goal is that someday she will be an independent individual, capable of living successfully in the world around her.  In the mean time, we are encouraged to see great strides in her own ability to self-regulate.  This is HUGE!

I could go on as there was so much more that they shared, but these were some of the highlights.  For further information including strategies and techniques, I would suggest visiting the website:
http://www.empoweredtoconnect.org and reading the book "The Connected Child."

Fashion Plate

This face says, "You caught me!"

I can't explain this boy's fascination with winter apparel, but he loves it!

Just thinking...

Read this in church recently and am pondering :

[from "Alliance Core Values"]  Achieving God's purposes means taking faith-filled risks.  This always involves change.
Hebrews 11:6


What will 2012 bring for the Waggoners? "Change" and "risk" are notions we humans typically try to avoid. Something to think about...

Our Journey to Understanding Ellie, Part 1

Our Beautiful Daughter 

I was recently asked if we had any news on the results of Ellie evaluation at Cincinnati Children's!  It reminded me that I've done a poor job of sharing here what we've been learning this fall in regards to our sweet girl.

Here's a brief recap: Because of a cancellation, Ellie's initial evaluation was moved up from December to mid-September.  The physician didn't believe that Ellie clearly presented as autistic (because her social and verbal skills were relatively strong), but that she may have some language processing issues and sensory needs resulting from a year and a half of crib confinement in the orphanage.  She ordered an austism and language assessment over three different appointments (one in October, one in November, and one in December), with the team coming together and sharing their findings with us in February.

Ellie's testing is complete now and we are more than curious to get the results (which they warned us would be like trying to drink from a firehose).  In the language testing, the only thing we know so far was that she didn't fail the vocabulary test until reaching the age-13 language level!  Attribute that to smart parents (ahem) or more likely, a combination of natural intelligence and living in a community of college students. ;-)  What we're most interested in is her receptive language score as she lagged significantly in this area as a Kindergardener.

During the autism assessment, Nathan (who observed the testing via video feed in a separate room) was initially frustrated by her lack of seriousness in participating in the initial stages of testing.  Ellie has a tendency to use humor/silliness for attention, or, we suspect, when she knows the material so well she finds it boring.  She eventually snapped out of that and finished relatively well.  At one point she had to predict where an object was hidden after several moves under a cover (think the "shell game").  Nathan said that every single time she would guess wrong.  Every. Single. Time.  Given that Nathan does a lot of disappearing magic tricks for her, he suspected that she was guessing wrong to 'save face' for the tester or again, make a game out of something that was 'too easy' for her.  All the while she demonstrated all of her repetitive motions and other quirky behaviors so that the psychologist was shaking her head over Ellie's behaviors which on one hand appear so autistic yet also completely contradict an ASD diagnosis.












































Over the course of the fall between trips to Cincinnati we've been studying the research of Dr. Purvis and her team at Texas Christian University through videos and discussion at our monthly Adoption Support Group (what a blessing, I can't even describe).  In November a few of the researchers at the TCU Child Development Institute came to Lexington to conduct a parenting seminar which we were able to attend.  We found their information so valuable for filling in some "blanks" I've always had in trying to understand the physiological affects of institutionalization on the brains of children, particularly in the crucial first three years.

Ellie's first speech therapist had introduced us to the term "Institutional Autism" in 2007, giving us an older article by some researchers in the United Kingdom.  They reported that between 15-20% of children in E. European orphanages were prone to develop something they called Institutional Autism (vs. organic autism, which at the time they believe couldn't be 'unlearned').  They felt it affected particularly sensitive children and was manifested by rocking, eating/chewing/swallowing issues, and emotional withdrawal -- all of which were manifested in our Ellie (and the % played out pretty accurately in her orphanage's population).  The article gave us hope that these behaviors could be overcome with placement in a family and early intervention therapies, but no "why's" for the causes of this behavior other than that their little bodies were 'self-soothing'.

A few years later I came across a very brief news snippet in Adoptive Families magazine that mentioned that brain scans of institutionalized children revealed enlarged amygdalas (the part of the brain that stores emotional memories), similar to children with autism.  Interesting stuff, but no more explanation.

I could understand why when we brought Ellie home she couldn't walk (no muscle tone from laying in bed all day), could not chew or tolerate solid food or objects in her mouth (no oral stimulation from chew toys, solid food, or eating off of a utensil), and why she had strabismus (nothing but a white ceiling to look at).  What I didn't understand was why all the other sensory and learning issues.  What was it about the early trauma that makes a child more prone to struggle with these things?

This is where the team from TCU provided so many "light bulb" moments for us.  I was calling our parents and spewing back as much of the information we could remember and salvage from our pages of hastily scrawled notes.  For the sake of others who might be interested, I will share my notes, but I believe the information is deserving of it's own, separate post (this one is long enough already).

Suffice it to say, the information explained so much of Ellie's behavior to us.  It made us more empathetic to her fears and anxieties.  It gave us tools for parenting her where traditional parenting techniques just don't work (but only escalate matters to where discipline is not only unproductive, but seemingly detrimental).   It gave us strategies for empowering her to have successful days without meltdowns and assist in her learning potential.  It also reconfirmed that home schooling was the best decision for her particular needs right now.  We are blessed to have discovered these resources for our daughter at this stage in her life.

I embark on posts like this with a bit of trepidation because the last thing I want to do is scare people away from the idea of adoption --  I want so badly to see abandoned, lonely children find homes with permanent families!  These children come from backgrounds of deep, deep loss that leaves an imprint they will always carry with them.  Thankfully, we have a Father who knows, relates, redeems and heals.   In another post I'll explain how some of that healing can take place.  Thanks for reading and hearing my heart tonight!

Digging Out: Hershey, Part 1

After several days in central Ohio, we made our way to Hershey, PA on New Year's Day to enjoy some time with my (Cydil's) family.  Why Hershey?  None of us had ever been there before and we were looking for a place to meet somewhere closer to my sister's family in Vermont.  This is the 2nd or 3rd time we've chosen to spend Christmas away from home and the change was fun.  It's definitely less stressful for Mom, and we have the excitement of seeing new places and doing different things than we can enjoy around the farm in central Illinois, like enjoying a swimming pool and outlet shopping nearby. ;-)

The first morning there we had our gift exchange.  Don't the kids look adorable in their hats?

What?  I wasn't supposed to open this yet?

Ellie -- you're so beautiful with your eyes lit up like that! Definitely anticipating presents!

Here are a few other random photos from our time together.

I love this photo of the grandchildren, but have to chuckle that it appears that someone didn't "get the memo."
Pippa and Reni are duded out, but Els and Tua evidently preferred to keep it casual!

It was a relaxing few days together that went way too fast.  Later I'll post our pics from the chocolate factory.  Definitely a fun activity for a family!

Digging Out: Family Christmas (Wilmore)

In the interest of preserving memories of our family traditions, I'm going to share these images a bit late...

Long before we had children, Nathan and I would have our own little Christmas celebration before leaving to be with family -- a special meal on our wedding china, then opening gifts by the fireplace (about the only time of the year that we use it)!  The addition of children has changed very little.  We kept it pretty simple.  Each child got a DVD, an activity (game or puzzle), a special change bank (divided for saving, tithing, and spending), and for their big gift, they each got a remote control car.  Ellie's reaction was priceless!  Than contrary to our better judgment, we tried sleeping under the Christmas tree, but that lasted all of 20 minutes! Special memories with our little family!

One other gift I forgot to mention was a DVD of all of our home video clips from 2011.  They LOVE it.  And I love not being chained to the computer to keep You Tube clips running! ;-)

Digging Out: My Birthday (December 23)

We got back Thursday night from Christmas travels.  The timing of everything has really thrown my clock/calendar 'off'.  I'm accustomed (from 12 consecutive years of this schedule) to returning home from Christmas with a week between travels and the return of students.  This year:  1 precious day (new student orientation takes place in our building TODAY)!

Being gone 13 days means lots of mail to catch up on.  Being gone over Christmas means bringing home more stuff than we left with.  Leaving without finishing up all of our pre-Christmas projects means we're starting this new year off behind.  We have Christmas decorations to take down, people!  I will be honest and confess:  I loathe taking down Christmas decorations.  I'll go to the dentist any day.  Seriously.  Christmas decorations -- I almost would rather not put them up to begin with!  (Maybe because putting that stuff back into storage requires moving furniture in some places and moving vehicles with wheels in other places?)

So, we're home and I don't know where to start.  This post is here all because I picked up a camera.  Yes!  I went to move a camera from an inconvenient spot.  Because it wasn't one that was taken on our travels, my thought process went something like this: "Oh, I better see if the battery needs charged.  [Yes] But wait, what pics are on this camera?  Oh!  Our family Christmas and my 2 favorite memories from my birthday! [the day we were to leave after lunch for Ohio but didn't get on the road until nearly 5PM].  I have to post those before they get moved off the card and pass their expiration date for posting."

My favorite people were so sweet and made me breakfast in bed.  I love, love, love the image above and I don't want to forget this.  Ellie was singing her heart out to me (Ellie doesn't sing.  Hardly EVER.  She's starting to more, but it's still pretty rare).  It was so sweet and she just struck me as really grown up in that moment.  Oh how I love that girl.

I went in the kitchen later and found this:

Apparently the first trip to the bedroom resulted in a spilt cup of hot tea.  Hence no beverage on the tray Ellie is photographed with above!

Because my birthday "day" was so chaotic, Nathan and I celebrated 6 days later at the Easton Shopping Center in Columbus with Cheesecake Factory for lunch (YUM!), browsing Barnes and Noble, and then viewing the new Sherlock Holmes flick (I've been a big fan of this detective since my Dad read me the "Speckled Band" when I was ten or eleven).

Thanks to all of my friends and family who blessed me with phone calls, e-mails, and FB messages.  And thanks to Mom and Dad Waggoner who had dessert waiting for us when we arrived at their home Friday night, and then later watched the kids so we could have our lunch and movie date! All in all, it was a great birthday!

Bringing Reni Home: The Photobook

Click here to view this photo book larger

I've been anxious to share this project on the blog for a while, but because it was to be a special surprise for grandparents for Christmas, I had to keep it under wraps a bit longer.  I designed this book as 12x12 pages in my favorite album design software, FotoFusion, to upload it to the album manufacturer of my choice.  

I'm sharing it here via Shutterfly as I'm away from home and don't have the right software to share it via a different slideshow program... If you click through to the Shutterfly site via the link above, you have the option for viewing it full screen so you can more easily see the images and read the text.

It took me a bit longer to tackle this project, but I'm pretty happy with the results and hope that Reni will appreciate this when he grows older!

(P.S. We love Shutterfly -- their featuring of Ellie's homecoming book on their baby microsite and in some printed materials was a special, unexpected financial provision for Reni's adoption fund!  You never know what instrument God will use to provide for your adoption needs!)