June visit to Cincy

Today we had another meeting with Ellie's team up at Cincinnati Childrens...

She positively squealed with delight when she saw her 'examining room' -- a large sensory room full of every kind of crash pad and cushion you can imagine plus a giant platform swing in the middle, where she laid on her stomach and 'flew like a bird' for several minutes.

While Ellie played, we discussed the areas that we wanted to work on and the team gave us some strategies and tips for success.  I share them here as much for my own memory and to serve as a development marker as anything else. It's certainly not a criticism of our daughter or indication of any kind of 'disappointment' in her.  As we were reminded again today, while she lay confined in an orphanage crib for nearly 18 months, the brains of babies with primary caregivers were actively integrating their central nervous system through touch, rocks, strokes, pats, walks, and more.  Ellie was severely deprived of this in nearly every way imaginable.  And probably then some that we haven't thought of.

A new description I heard today was "under responsive."  While we subconsciously process where we are in our environment through a variety of sensory inputs (our inner ear for balance, or the feeling of pressure under our feet when we're standing on the ground, for example), Ellie has to seek it out extra hard to feel her body in the same space.  Even her loud voice which I feel like I'm repeatedly chiding her for (which they called a 'lack of vocal control') can be explained by this.  And given that she has a high need to 'feel', it's incumbent upon us to provide her with what she needs to properly soothe herself and meet that need.  Already we have an exercise ball that she frequently sits on when she's watching TV.  We have a trampoline in the living room that's not exactly an attractive accessory to our decor (and also the source of much bickering between my children) but always accessible to her, and we know that her desire to push the shopping cart or pull Reni in the wagon is extremely relaxing and 'centering' as well.  Heavy bedding helps her sleep more soundly. Now, if we could only convince her how much she'd enjoy carrying in the groceries! Just kidding, of course. ;-) We were encouraged by the OT today that we're on the right track and Ellie is obviously learning what she can do on her own to stay relatively even keel (this is huge!).

In addition to continuing with those tools, we were also encouraged to ramp up our use of visual aides for helping her anticipate the day's schedule and the transitions coming ahead.  [This is a BIGGIE especially given what the next year or so of our family's life will look like as we travel to share about Albania around the country. Nathan has been looking extra hard for a small RV that we could use as our 'constant' home base so that she/we are not sleeping in a different bed every other night, thereby mitigating some of the stress of transition].  The example the OT gave us was the use of agendas at all-day conferences.  How many of us live and die by the presence of the conference schedule to know when breaks or mealtimes are coming and what time sessions end?  When we don't know that basic information, our focus suffers and we are pretty much  miserable.  While we have been intentional each night to verbally lay out the next day's plans to Ellie, I think a visual chart will also be very helpful - one that incorporate images as well as words, now that her reading is really picking up.  What's funny is to see how Reni has cued in on our evening run through and repeats to himself and to Ellie a lot of what we say, impressing it on his memory.

Yes, that little guy was hiding under her shirt hem, hence the uproarious laughter and giggles at her little friend's 'secret hiding place' in the photos.

The final new piece I'll share here was the use of "social stories" as a means of helping her make up some distance in her social skills.  This was interesting and exciting to us because it gives us a specific tool to work on with Ellie, and serves as a reminder that appropriate responses can be taught if we take the time to be intentional in teaching her.  From what I understand, a social story is presenting a particular situation (like attending a birthday party or meeting a new person), and talking through the appropriate ways to interact and respond within her abilities.  There are even groups of parents and kids that meet to work on improving social skills together.  The speech therapist was particularly helpful here and gave us some more visual tools to work on with Ellie (which I think will be much more effective than our words alone). There was probably a lot more, but I'll rely on their written reports to jog my memory.

In the past year, we feel like we've seen her take more strides, and her meltdowns have been fewer and further between, almost to the point of making me wonder if today's appointment would be that enlightening.  It's hard to know what specifically to attribute that to (maturity, environment, security, or all of the above?), but we really believe that homeschooling was a key piece and has been the right choice for her.  We are so thankful that it's an option and we plan to continue it next year!  To reiterate what I shared above, this is my way of processing what I've learned and if it helps someone else, all the better!  Take care!

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!