Alex on Day 8

Yet another picture of Alex (aka Sasha) on the swing, his fav place to be.

Showing us how he can feed himself with a spoon.

The theme of today’s visit with Alex was: “Boy, this kid has really been understimulated!” We’re coming to an increasing awareness of the extent of his sensory deprivation over the past few years. The clues have been adding up over the past few days, but today we witnessed him engaging in some “stimming” (self-stimulation) behavior—basically, purposely banging his head against the wooden post on the playground equipment, several times, rather hard—and laughing about it. Pretty typical for kids raised in institutions; they get bored, understimulated, and compensate by banging their head. This explains the healed-over scars on his head, which we also noticed in the last photo of him that we received just after his transfer from the baby house to this institution. In that photo, the scars look fresher, so presumably that behavior has been curbed since he arrived here. Yesterday we saw his groupa, the room where he sleeps and presumably spends a lot of his waking hours, too—pretty bare-bones, other than a television (playing adult programming). No wonder he gets so excited when we come to get him.

More evidence of his under-stimulation…. Sometimes we see a five-year-old kid in those eyes—particularly when he has an extended exchange with the staff. But other times, he behaves much more like a two-year-old. Today we spent a lot of time playing on the swings, playing catch, sliding down the slide (with us holding onto him the entire time), and then we moved to a covered picnic table, where we took out crayons and then a magnadoodle. He did draw a little bit before playfully throwing the crayons and paper, at which point they went away. He drew a little with the magnadoodle, but mainly he was fascinated with dropping the pen (which is attached to the drawing pad with a logn ribbon) down into the crack in the picnic bench, and then retrieving it with the ribbon. He did this over and over, with quiet, alert concentration—laughing to himself occasionally, but mostly just figuring out how to get it into that space and pull it back out. If he never had the opportunity for that kind of learning, then that would explain his fascination with such simple spatial-mechanical tasks. We’re thinking of adjusting our play with him to be more like what we’d do with a young toddler—around 1 or 2. We also expect that between his siblings and his school experience (whatever that looks like), he is going to catch up quickly.



Something else we’ve experienced in recent days—we’ve had increased contact with the other kids, often in a group setting, but sometimes one-on-one. Yesterday (or Sunday?), three teens came over and watched us swinging Sasha on the swing. One of the boys looked to be 14 or 15 years old; he seemed very much like any other kid that age, right down to the cell phone he kept taking out and checking. He was very friendly and indicated that he was “friends” with Sasha and had played with him before (assuming that our understanding of what he was saying is accurate). Some of you may remember us praying for a playmate for Alex; well, apparently we met him. The kids in this institution are on a broad spectrum in terms of their mental abilities; what they seem to share in common is a deep hunger for contact with others, especially anyone from outside the institution. Some of the kids with more profound mental impairment will come right up to you and hug you, or smile and reach out their hand for a touch—and that is really all they want in return, is a smile and a touch of your hand. It seems to make their day. The older teens we have been seeing seem a little more guarded, but still very interested in what is going on. We have been careful about what we say to them, but I am willing to bet they wish they had parents coming for them, too. This week, let’s hope (and pray) that we (or RR staff) can get permission to take some photos of these older kids, so they can be posted on Reece’s Rainbow. If they can get that far, it is likely that they can get families, and wouldn’t that be wonderful?

We don’t expect any further word on paperwork until Friday, although we are hoping to be pleasantly surprised by an early approval from the department of adoption.

June 4 update

Hi everyone--Susan here again.  We decided to take Sunday off from blogging.

We visited Alex both yesterday (Sunday) and Monday.

Today (Monday) is a holiday here--I honestly don't know what--so the institution was employing different staff both today and yesterday, and things seemed professional but a bit less structured.  We spent Sunday and Monday partially inside, partially outside.

Our sessions have had a bit of a pattern--play with and in the ball pit, try to play catch (or avoid getting hit by balls in the head.  Jerry has joked he is clearly meant to be with us, because Alex accidentally keeps clocking me in the head, just like playing with my other kids).  Eat the "second breakfast" that is brought to him.  Go outside for a while, indulge the swings until we give out (we have to hold him on the swing, but he loves it so much--his whole body wiggles and giggles when he sees it!).  Then find a nanny who can take Alex back.  Today, we were escorted into his groupa (they organize the residents into groups), into what was clearly their bedroom--cribs, a couple of beds, very neat, lots of children, two adults.  I guess there were 10 kids there.  There was also a TV running.  Maybe it was near naptime or maybe this is where he spends a lot of his day.  We don't know.  The staff were very affectionate with Alex and helping him say goodbye to us, and we (again) reassured him we'd be back tomorrow.

Alex is a little over the top when he is with us, and a glimpse of that room gave us a snapshot as to why.  Was the room bad?  No.  Was it stimulating?  No.  We play with him one on one.  No matter how tired he is (and he does get tired), this is too awesome an opportunity to pass up.

I'm kind of concerned about the throwing.  He throws everything (well, except food.  I guess he has limits).  It's hilarious to him.  I'm more concerned just because he has no aim, lots of strength, and I spent a lot of Sunday wondering if he will ever learn to play in other ways.   I wish I knew.  Trying to figure out what is a result of where he has lived and what is a result of any permanent mental impairment is really tough.

One other thing--when the nannies say he likes to move, they aren't kidding.  We had a short video of him crawling with his arms, heading straight for the door.  Then one of the nannies today showed us (as Alex's request, we think) how he climbs the wall with support.  I kid you not, climbs the wall.  There is a ladder on the wall, built into it, for this purpose.  No one he has arms like a weightlifter!  He will need it, because he needs to compensate for his legs...but it is still striking to me.  The staff people here have clearly worked with him.

June 2 visit

Hello everyone!  Susan here this time.

We visited Alex today and were greeted by a nanny we had met the first day at the "first meeting."  She quickly ushered us into one of the therapy rooms, pointing outside and saying "too cold" (it was 59, but it had also been raining and threatened to do some more, so we were OK with an inside day).  She quickly got Alex, who came to us with tear stains on his cheeks but a big smile.  She explained he was crying and asking for Mama and Papa.  We were surprised and of course delighted, although we're pretty sure he sees us primarily as the ticket to the swing outside.  We gave him a big hug and when he pointed outside (of course), we said no (nyet) and whipped out the balloons again.  All is well.

Having been in this room before, we knew that they placed the children on a particular section of the floor covered in a blanket, so we bravely plopped down there (sitting on the floor is usually not allowed!) and played with the balloon for a long time.  We are trying to teach him catch.  I was saying this kid may have CP but he has the heart of a football player--really likes to throw, seems like he is trying to catch.  His upper motor skills aren't perfect, but they aren't too bad either.  And he wasn't in a sweater today (the inside of this place is pretty warm)--we could tell how strong he is.  He is definitely working his arm muscles a LOT.  He has a very wiry build.

After playing in the ball pit a bit, and showing us how he can stand and wants to walk (his legs really scissor, which is typical of CP...at least as far as we understand), we were interrupted for "second breakfast"--today, the kasha in a bottle and a small roll.  He fed himself.  Then we brought out the magnadoodle.  Things got interesting--he really began talking then, in phrases if not sentences, and we so wished we knew what he was saying.  But he was more calm and focused than what we have seen.  He was interested in the "writing" but more interested in how the stylus was connected to the plastic (we had cut the cord and attached it with a longer ribbon, thinking this would make it easier for him to manipulate).  We took out a book--where he really seemed like he was figuring out how does this thing work anyway?--and were interrupted by some older teenagers who were visiting from Kiev.  They had been introduced to us they belonged to a Baptist Church there and visit this institution to play and work with the kids every 2-3 months.  One spoke decent English (more compliments, more blushing) and was pointing out we were the first couple of adopt from there in a very very long time.  Word gets around, I guess.  Anyway, they were very kind, and they invited us to the music they were about to perform for everyone, so we arranged to get picked up a little later than anticipated and watched the "show" with Alex.

How was it?  Think Baptist bible camp songs in Russian.  Everyone seemed to enjoy it, Alex, eh, a little bit but not so much (we think he was still hoping for the swings), and at the end the children and young adults sang back to them with great gusto (I told Jerry I think the accordion man's songs were coming out there!).  It was very cheerful.  Then we had to go, and said goodbye to Alex, paka--paka (bye bye).  Jerry communicated to Alex (and the nanny, the assistant director actually) that we would come again tomorrow.

It was a good visit.  Alex seems to increasingly like us (not just the fun things we do), we saw him talk, be calm and concentrate, we got more of those 5 star giggles, and I liked seeing the performance and interaction.
Here is a video showing how Alex can stand, and even walk with a scissors walk -- clearly he should improve in this department once his legs are strengthened.

Balloon video + pics

For some reason the balloon video didn't make it onto the blog yesterday, maybe because of our extremely slow Internet. Here it is, along with some pictures:

Alex on Day 5: CP therapy and balloon therapy

 We had a very good visit with Alex today. We arrived a little late, so when we finally walked into the exercise room, there he was, hanging in an exercise seat all by himself (with his nanny, Yana). His face absolutely lit up when he saw us—I’m sure anticipating more fun. We had asked Yana to show us how to stretch Alex’s tight muscles as part of his CP therapy, and she demonstrated that right away. We videotaped most of it, in order to get feedback from our friends who have experience doing therapy with CP kids.

After that, we headed outside—“on the street,” as they say in Russian, and ignored Alex’s pleas to “go there, go there”—meaning the swing, which he would do the entire time if we let him. Instead we went to the covered picnic bench and showed him the balloons, which of course he thought were hilarious. We blew them up and let them fly all over the place, and then tied one off into a sort of ball that we played catch with.

He got tired of that after a while and started whining to “go there” again, so we s-l-o-w-l-y made our way around the building to the swings. Along the way, we showed Yana our family book that we made for Alex. She has been very kind and helpful, and today she brought along an English-Russian dictionary, and tried out some English words on us—family, children, a few others. She had clearly been practicing. Everyone here wants to try out their English; the way to make a Ukrainian smile is to compliment his or her English!

Between her smattering of English words and our smattering of Russian words, we were able to communicate a few things. Like, we found out that the phlegmy respiratory sounds he makes is not due to an illness, but what she called “tempermental”—meaning, I think, that it’s associated with his CP, and probably ongoing. We also saw him feed himself by hand (bread, banana), and were told that he feeds himself with utensils when he is at a table.

While we were swinging Alex, we got a call from Luda saying that our application to adopt Alex had been submitted to the DAP, and their initial review of it (informally) didn’t turn up any problems. They are off for a three-day weekend, so if there are any problems, we will find out sometime after Monday. We hope to hear word of their approval of the application by Friday, which would allow us to go to court the following week; once we pass court, it’s just a matter of getting a passport and dealing with the U.S. Embassy, which we hear good reports about. We continue to pray for a short process…particularly that the court decides to waive the ten-day waiting period. Adding another two weeks onto this trip would be difficult, to say the least, and we would probably opt to come home and one of us come back later to pick up Alex—also a difficult process.