When I have nothing to say...

In some rare spare moments, I've come across a few posts that have spoken to my heart, reminded me of God's goodness, made me laugh, or just noodled their way into my thoughts throughout the days of laundry, filling and emptying dishwashwers, and attempting to keep up with young children.

So many things I read are golden, but I don't always remember to share them.  These are some current goodies so grab your hot cider (some tissues too!) and settle in:

Fake Family 
...I had these ideas about bringing the kids home to a perfectly run household with impressive structures and systems; our food was all organic obviously, and our kids miraculously stopped fighting. In fact, after Ben and Remy arrived, there would never be another argument in our home. We would be the ideal prototype for responsible child-rearing. Our kids would track with math and science scores reported from Japan. They would certainly not become addicted to Movies on Demand or Angry Birds, because they could only earn a maximum of fifteen minutes of screen time a week after completing their required chores and "bonus exercise points" through the online job chart we complete by 6:30pm each night, after enjoying the traditional Ethiopian meal I made from scratch but before their systematic language instruction (their bedtime ritual)... (click here to read in its entirety)

The Incredible Story of Mr. Miles

...I knew Debbie was right. But, really, I believed that she was right about her situation. Maybe not so much about mine. When things fell outside of my perfect timeline, I was frustrated and blinded by consuming desperation.  MY TIMELINE MUST WORK. Or so I behaved... (click here to read more)

When Dry Bones Breathe :
...Weeks later, we learned of Lily and months later, I held her for the first time. In many respects she was that vacuous field of bones. A life, waiting to be written-on. Muscles formed from birth, but without shape — she had atrophied. Years existing, but not really living, had taken their toll. And her almost-eight years of empty challenged my greatest fears. Could He heal even her? Was she forever damaged?
Click here to read the rest

Behind the Blue Door
Behind the Blue Door are maturing miracles, chosen by God, for a perfect plan and purpose, waiting for those who will help them reach their potential.  Behind the Blue Door are joyful, cherished, princes and princesses of the King, positioned to receive from God.  Behind the Blue Door the pitter patter of little feet and little voices fill the air.  Behind the Blue Door are seeds, planted by God, waiting for the nutrients to help them grow.  They are Standing, Waiting, Behind the Blue Door.... (read in it's entirety here)

Nonna visits!

Last week while we were in Cincinnati with Ellie, Nonna was down in Wilmore to stay with Reni.  He enjoyed some special "Nonna" time, which included a visit to the University bookstore and library... where Nonna may not take him by herself again for a while.  Our little speedster (don't let the lack of feet fool you) took off to hide from her between the rows and rows of books.  And when he hides he can be very, very quiet!  Apparently, he did a good job!  I'm sorry I forgot to tell her this is one of his favorite games!

Thanks, Nonna, for coming to visit!  We are all so appreciative!

Friends are the best!

Last week we had a long overdue visit from friends, Essie & Chloe!

Uh oh!  A crocodile is coming!

Silly girls!

Supper on the porch sounds like a good idea.  No, our daughter has not watched Everybody Loves Raym*nd, but she's got Robert Bar*ne's little quirk down to a 't' -- just one part of her sensory idiosyncrasies as she has shifted from 'smelling' everything to touching it to her chin -- and I can't believe I actually captured it here because she's pretty fast.

Thanks for coming, friends!  Can't wait til we see you again soon!

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.

Reni's Quote of the Day...

Reni, blowing on his marshmellow at cabinet retreat Friday night (photo courtesy of Bryce Toole)

I was leaving Ellie's room after tucking her in a few minutes ago when I heard him giggling in his crib and babbling to himself, "I'm a wack-a-too".

As I went into steal a good night kiss, I asked him,  "What did you say?"

He said again, "I'm a wackatoo!"  (followed by more giggles)

I thought that's what he had said, and it sounded like something silly perhaps his sister had taught him.

Then Nathan translated from the hallway, "He said, 'I'm a Waggoner too!"

I liked that much better! Good thing he is cute because he is t-e-s-t-i-n-g his mom and dad!  I think [hope] it's a 2-year-old thing!  He's always been independent but now he's testing to see what kind of consequences exist for disobedience!  Ugh!  Today was rough. Today was: throwing toys and narrowly missing injuring his sister.  It was throwing food on the floor (immediately after being told 'no') and doing this over and over again.  It was also asking for milk to drink in his crib at nap time and throwing a royal, screaming fit when his request was denied (and Mommy did not cave).  And that's only part of it...  Reni, aren't you glad you're parents are trying to train you that you can't have your way all the time, that we want you to stay safe and healthy, learn contentment, and much more?

So, if you drop in on us over the course of the next several days, don't be surprised if you hear tears from our boy.  This is the phase we are in!

Oh the cool things you get to do when you hang out with college boys!  I didn't know about this experience until seeing it on Facebook!  (I was cooking supper up at the dorm where we were staying and Reni was down at the campfire...)

Why We're Homeschooling

The first day of school went really well (from my perspective)!  We ran into some technical issues getting started but it was nothing my technically-gifted husband couldn't figure out.  I'm anxious to get more firsthand experience with the material, however this morning I was busy keeping Reni out of their hair and the washing machine going, not to mention cleaning up after that special first-day-of-school breakfast I made. ;-) 

Preliminary Observations:  1.) this is something I think I can do when Nathan's not around (yes, I lean on him like a major crutch), 2.) from the parts I did see, I think this will keep Ellie's interest more than I expected, 3.) we've gotten some wonderful encouragement from homeschooling friends (thank you Corrina, Rachel, Kelly, Jennifer, Steve, and many others!) that this is something we'll enjoy, and I have to say, so far they're right on.

We committed to homeschooling late this summer after coming to the understanding that there really was no other educational option that would work for our Ellie this year.  Initially I had a LOT of fear and trepidation about the concept of homeschooling right now -- the discipline/time it would require, pushing through with Ellie when she didn't want to "work", missing out on a vital connection point with our small town community, etc.  If you've read our blog at all this year, you probably remember that we wrestled with the idea of retaining Ellie in Kindergarten, only to determine that she needed to move on to first grade.  

After committing to this plan, we brought her to visit her new grade school a few times over the summer to get acquainted with the facility.  We were nervous about transitioning to a new school where we knew few people and few people knew Ellie, but we were also excited to see her blossom into an independent student in first grade like the principal assured us she would.  Somewhere though between those visits and leaving for vacation July 30, we got a better picture of what first grade would look like for her at her new school and we got really concerned.  Because she's on an IEP (Individualized Education Plan), her options of classrooms were extremely limited (there are only 2 collaborative classes in her grade), and due to the fact that we were notified of her placement less than 2 weeks prior to the beginning of school, there was even less flexibility in getting her into the classroom that we felt would best suit her.

Given that we believed we could lose hard-won ground if we sent her into a situation where we didn't think she would succeed, we had to consider alternatives to public school for this year.  Private school didn't seem like a viable option because of her individualized needs, so home schooling was all that remained.  And while we weren't opposed to homeschooling, we hadn't anticipated beginning so soon. Up until this point we have always accepted any help professionals wanted to give us in understanding and teaching our daughter.  We had excellent resources for this first with First Steps, and then at the Early Learning Village (our county-wide preschool and Kindergarden).  What she really needs is individualized instruction and it occurred to Nathan and I that short of hiring a full-time private tutor, who can give that to her better than us?

In retrospect, the timing of home schooling this year is pretty ideal.  Last year, during Reni's first 9 months at home, Ellie attended all-day Kindergarden which freed us to give Reni some special one-on-one time to bond with us.  This summer allowed us to have Ellie home all day with us again, and no one enjoyed it more so than her little brother, Reni.  They became best buddies and I'm sure he'd be lost without her if she was gone from 7:30AM til 3PM every day.  This fall we start this school year a stronger family unit which I'm sure will be even stronger when complete this home school "experiment!"

Speaking of "understanding" Ellie, we were notified this afternoon of a cancellation at Cincinnati Children's which allows them to move her appointment up from early December to mid-September!  We are really looking forward to this evaluation, though I'm praying about how to prepare her for it while minimizing her nerves. ;-)

And speaking of appointments, Reni has his 6-month appointment at Shriners on Friday.  We're hoping that they will fit him for a new set of legs (he's way outgrown his last pair)!

And since every post is more interesting with photos... Here's Ellie with some Sunday afternoon company.   The Jeep is Ellie's, the guns are Reed's.  I think the pink/purple jeep makes them a little less scary, but Ellie seemed to enjoy holding up her mom a little more than I liked.  Whadya think?  The A-TEAM?

Sunday night we showed Soul Surfer at the center and served fruity frozen drinks.  Ellie and Reni both went ape over the tiny umbrellas and both would call my name and hold the umbrella over their head like, "Look, I know what this is for!" or "This is too small for me!"

  On a related note, walking in the rain to the cafeteria on campus today, Reni uttered his longest sentence yet, "Oh no, Mommy!  The water is making the cars wet!"

Take care!

Starting School...

I told my mom that I would try to get a video from this morning's first day of school but a couple of things sidetracked us...

First, Reni was up every. single. hour last night.  The result being, we were all a bit short tempered when trying to hit our target start time this morning.  I didn't think you'd want a video of whining kids or impatient parents.

Then, it just took a while to find the lessons and figure out the whole "online" format for school since it just went live this morning.  One humorous note:  When Nathan finally found what we were looking for, he scanned the list of today's objectives and remarked to me that a particular lesson wouldn't be difficult for Ellie at all to which she responded quickly, "Oh yes!  Let's do THAT!"

Vermont Update/Links

My sister, Jenny, and her family live in the middle of the flooding brought over a week ago by Hurricane Irene.  They just got their power back on Saturday!  Mom sent me a link tonight of some amazing aerial shots.  Scroll down to the middle to see areas close to the Shaws (for reference, Jenny and Seth live in Bridgewater, Goodro Lumber -- the Shaw's family business -- is in Killington; Route 4 is their major road to get anywhere):
http://www.mansfieldheliflight.com/flood/

Some photos from Seth's FB:

Rt 4

Goodro's

Trial Run/Tour of the New Classroom

The school room came together this week so this morning we thought we'd show Ellie and Reni their new space -- and work on some writing exercises and sight word practice to let them know the room was for more than just sitting at a fun desk!

Ellie's curriculum came with several computer disks with educational games, so Nathan is showing her how to get started.  Though this room has a window, it barely ever gets any direct sunlight, hence all the lamps.

Working on sight words -- again, notice how Reni wants to be involved in everything?  Don't worry, we've stocked his desk with activity books so he can do his own "homework".

Just after snapping this photo he told me, "I wanna draw Nini" (translated, "I want to write 'Reni' [on the dry erase board]").

The computer now moved to her desk, Ellie works on a matching game by herself.

Ellie requested name tags for their desks.  I whipped these out with the aid of some digital scrapbooking papers and one of my favorite software programs ever, FotoFusion by Lumapix (this is what I use when I make collages of images for the blog, as well as albums/photo books, which was my primary reason for purchasing the program).  I LOVE it! It's super intuitive and versatile. I must also give props to IKEA for very affordable photo frames.  We added a few more to the walls this afternoon.  They are ridiculously cheap. (Clock also from IKEA).  The children's desks were gifts from PopPop Champion in New Jersey, and the room already held a large desk from when the room was previously used as an office.

This little fella became a victim of Ellie's keen interest in science and small animals in general -- after she pronounced him "not breathing," Nathan had the foresight to save him for the classroom corkboard.

The super wide angle lens makes the room look much larger than it is in actuality, but it's really the perfect size for our needs!  What a blessing!  Thanks for stopping by for this tour of our new classroom!