Amazed

Photos courtesy of www.janmichele.com

I don't know why, but today I was taken aback again at the love God has for my daughter.  His love, which is so much greater than mine, was tenderly displayed on her behalf and mine in a little examination room two hours from here.

It may not seem like a big deal in the grand scheme of things, but today's evaluation at Cincinnati Children's H*spital was something I've been looking forward to, long before the appointment was ever set.  Ever since the first day we met Ellie and she arched her back, looked away from us, rocked her body and resisted the love and affection we wanted to shower on her, we've known that things weren't quite right.  Months and months of deprivation had done much damage to our daughter's body, heart, and mind.  I don't want to dwell on that, but even though it's been nearly five years and great miracles and healing have taken place (evidenced by many giggles, abundant hugs, and non-stop talking), we have daily reminders of the scars which remain.

This past spring I shared a bit here on the blog about our struggles regarding educational strategies, concerns about social development, and overall choices we needed to make for her future related to school.  We were told that for her to continue receiving special education services, she would need to have a label recognized by the state of Kentucky.

Within the first 18 months of having Ellie home, we were given the option of a formal assessment of her needs, but her First Steps therapy team (which had been seeing such rapid progress in her development at that point)  recommended that we wait so that  we could get results that would be more accurate as to the true nature of any issues which might exist. Shortly thereafter she was in pre-school and a diagnosis didn't seem pressing, so we continued to wait, fearing an incorrect diagnosis was worse than having no diagnosis at all.

Once Ellie entered all-day Kindergarten and 'real' learning was expected (no offense, pre-school teachers), an evaluation seemed more and more valuable as a means of determining strategies which would best work for her to find success in the classroom.  Testing showed a large lag in receptive language skills behind her expressive language, and combined with her repetitious physical behaviors, her 'symptoms' seemed to fit within the autism spectrum.  A preliminary autism test administered by the school scored Ellie in the 'severely autistic' range.  While we are by no means experts in disorders of this nature, we didn't feel like that test accurately portrayed Ellie, nor factored in her start in life, and we therefore decided it was finally time to pursue that formal evaluation. We approached our pediatrician who quickly referred us to Cincinnati where we had heard nothing but glowing reviews for their comprehensive approach to diagnosing kids (ranked #3 nationally amongst children's hospitals by US News and World Report).

We were given an appointment in December and told by their scheduler that Ellie had been given priority status (the regular wait is 18 months!!!) -- thank you, Dr. Taylor, for whatever you wrote in that referral!  A few weeks ago they called to say they had a cancellation and could Ellie come in on September 16?  You know how we responded!

As the days approached for this appointment, I have tried to squelch my expectations.  I think naturally we all want to know answers to mysteries, explanations for situations, reasons to justify things, etc...  I also think I had come to believe what others have conveyed implicitly and explicitly that 'by now' Ellie should have shed any residual effects from her 18 months of crib confinement and adjusted to being 'normal'. To be anything less than that must be the result of some condition or syndrome.  I wasn't afraid of a label like 'autism', but while it was the most logical, it also seemed like her early life experience was continuing to play a greater role in her life than many were willing to concede or recognize.

Today we visited with a doctor of pediatric developmental behavioral health for nearly an hour and a half.  She visited with Nathan and I as well as interacted with Ellie, giving her several different exercises which included drawing simple objects, identifying letters, numbers, and words, performing some balance and reflex tests, as well as answering factual and abstract questions.  [Dr: "What's something that makes you happy?"  E (thinking): "... Buying toys!"] Ellie thoroughly enjoyed the interchange (though occasionally expressing concern that this not turn into a 'real' appointment that might just involve things like blood pressure cuffs or injections).  She told stories and in my opinion exhibited a pretty accurate reflection of her personality, infusing her typical humor and imagination.

Near the end of our time, the physician validated our decision to have Ellie evaluated.  She said, "I have good news and bad news.  The good news is that I don't believe Ellie is autistic.  The bad news is that ... she's not autistic."

In other words, while it's good that Ellie is probably not autistic after all, she doesn't neatly fit into a category which can easily be explained.  Therefore, a comprehensive evaluation will be necessary to figure out how to make sense of her struggles, quirks, and idiosyncrasies.  We have 4 follow-up appointments which will include a thorough parental interview of Nathan and I, a lengthy psychological evaluation of Ellie, an autism test to officially rule it out, and a language exam.  (Forgive me for not using the proper technical terminology here -- I've been up since 4:30 this morning, but I want to get this written while it's still fresh).

She explained that Ellie's bucket of repetitive behaviors is quite full (rocking, stiffening of arms and legs, 'happy hands', etc.) which might give the average person the impression of autism, but that alone is not sufficient to justify the label.  In the doctor's opinion, one of the hallmark symptoms of autism is a severe deficit in an individual's desire to be social, something Ellie clearly does not exhibit.  Our daughter actively SEEKS social interaction, with adults and her peers.  She's the class clown, loving to make you laugh, acting out for attention, pulling you over to play with HER. She will stop what she is doing if you interrupt a preferred activity, she will engage your gaze, and listen to what you have to say. Those behaviors are the opposite of what is typically seen in a child with autism.  While she may have some social delays, the doctor explained you can still lack a few tools in your kit and be okay.

One of the things that the doctor assured us of today is that it's not unusual that Ellie still be impacted by her orphanage experience. She told us that not a lot of research has been done as to why some children can seem to be resilient and bounce back relatively quickly while others bear the imprint for a lifetime.  Ellie may be somewhere in between.  Her repetitious behaviors were learned as coping mechanisms and will probably diminish as she grows older, more socially aware, and more able to regulate herself.  Outside of this consultation, we've been doing some studies on sensory processing disorders which has been really revealing too.

As our time concluded we learned that the doctor which evaluated Ellie today was herself an adoptive mother of a 7-year-old sweetheart from Chin* and that the dr also had a family history in missions similar to ours.  She referenced multiple cases of adoptive kids she knew who had come from backgrounds similar to Ellie's and my heart was warmed that God had ordained our paths to cross today.  I can't explain how meaningful it was to learn that the person treating Ellie has an understanding of our child's situation that is NOT generally found in the regular day-to-day world. (WE are still learning about all of the residual affects that pre-natal stress, post-birth trauma, social deprivation, et al has on child development, brain chemistry, etc.). So perhaps you can understand why I was near tears when I learned this (and several times through the day as I reflected upon it) and once again in awe of God's involvement in even this -- we could not have chosen a better doctor if we tried!  Oh, and did I mention that our original appointment (the one in December) was with a different doctor?  Because of the cancellation Ellie was switched to this particular physician. God is so good to us.