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!