Thursday, August 18, 2011

Day 4 of 14: Part II - Suddenly

Today was a mix of beautiful and blah. None of the day was helped by the constant rain either. It will rain here everyday until we leave, that's the season we are in here. The cool temperature is nice but the rain, not so much.

Rainbows do however exist, and they appear often suddenly after a rain.

Ian and I start each morning the same. He stirs and stirs, and then he'll sit up and all of a sudden, flash me this killer smile. I'll smile back, say hi to him and good morning, and then pat the spot next to me in my bed for him to come on over and snuggle with mom. We laugh a bit and then get up and get the day going on.

Today was a later wake up than usual for two reasons. The first was purely administrative in that we are in the two day waiting period for Ian's passport to become available where we have no other adoption things to take care of. The second reason just plain stinks. Ian had a really rough night. It's driving me nuts. It's not what he is doing really, it's where it all came from.

I know that he is out of those places, his baby house and the orphanage but it's so hard to let the absolute SADNESS I feel welling up each time I realize another one of those unnatural, disturbing behaviors that have been conditioned in him because he was an orphan. Yes, save the older children, but also, if you are thinking of adoption, getting a baby out as soon as you can has tons of merit too.

My baby suffered, I can tell. As former orphans go, and in comparison to some other recent former orphans that have come home, he's in really good physical shape. He's very small still, and he's thin, I can see all his bones. Yet, he's not starving and he seems to be okay that way. His little body is marred in SO MANY spots, signs of things I don't wanna think about. Who cares if it was falls (no 5 year old should have that many marks from falls), or other kids (which is horrible too) or caregivers (those woman creeped me out every singe time, just mean looking and cold). I don't want to see them, it's hard to see them, it makes me want to cry out for him. His little face is full of scars.

He's so unbelievably beautiful.




Last night he had a very fitful sleep. He would do the same series of behaviors over and over, and I discovered too that he is not only sucking his thumb, but he's using his thumb nail to dig into his tongue and there are "tracks" of missing taste buds from this behavior, in the exact width of his little thumbnail. I knew his method of thumb sucking was strange, and I could not understand what exactly he was doing with his mouth being open while doing it. That leads to another issue at night, His mouth is dry from the process. He then dry heaves and suddenly gags himself awake, which triggers him sitting up and rocking, sometimes slow and sometimes fast. Sometimes he'll then fall asleep doubled over with his face between his legs. Other times he'll lay back down and in 10 min. it all starts over again. Other scary thing he does is lay on his stomach to sleep and put his face right into the pillow, face down, with no place to breathe that I can see, and stay like that. It scares me to death and I'm considering taking the pillow from him because at night I can't turn his head like at nap.

He's an angel boy, my heart really hurts for all this stuff.

The ear is involved too. He tickles his ear and pulls at it and today I saw him scratching at it. At first I thought ear infection but it's not. It's self stimming to comfort himself and to feel human touch, even if it's his own, on himself. I tried a little experiment today. I was holding him and he would not stop with the ear thing so I moved his had to MY ear and guess what - he did the same motions to my ear and sustained it. This gives me hope that he can break from this behavior because it's a signal that he can be suddenly interrupted during it and not freak out.

Still, I feel like the honeymoon is ending because I'm starting to see all of the things that are so wrong about children being in orphanages and not in families. I mean of course one knows it's wrong, wrong, wrong on every level, but to see it right in front of you in a 5 year old child is just, um, ridiculous and hard. I don't even know how to find hope for those we left behind, there are so, so many.

Ian's a champion. We have two choices for breakfast, the one in the hotel restaurant, which has untold goodies, or the one I mix up in our room with my hotpot. Yesterday's hotpot oatmeal was not a hit, so I thought we'd push the envelope and venture downstairs.

There are potential disasters around EVERY corner with Ian in tow. He's unstable on his feet, he can't see well, so the steps are a problem right now, his balance is likely effected by his vision issues. Good news is that his eye appointment is already made so were are on that. For right now, it's bustin' up my heart right and left to see him teeter around. On top of everything he or we do, the boy is 5, and just being a 5 year old boy comes with a ton of regular impulses to wreck stuff. The one nice caregivers at the orphanage on Gotcha Day told me, "be firm with him or he will take the plane apart." WOW.

It's tough for me but I gotta find a way to BELIEVE that its not that hard. I mean, man, he's doing so well in terms of what it could have been so far. If there were two of us here, maybe it would be different because we could temper each other and spell each other, the process of transition is just so intense on so many levels, I think that is what is making it seem so difficult to me.

He wants to do it though. He's a little hero he is.




We made it treacherously down the stairs to breakfast. Allow me to set the scene: CHINA and GLASSWEAR within his reach every 2 steps, hot serving dishes within his reach, a FULL restaurant that was totally SILENT save the clanging of forks and the occasional coffee cup set down too hard and maybe the manic almost screams and grunts of a child excited about a choice in food, as much food as he wants, 4 drink choices, music playing, real dinnerware, other kids, no restrictions, no harsh words, no time limits to finish your food or else have it taken away, warm food choices, cold food choices, and on and on and on. For a moment I wondered if this was going to work, but by then suddenly it was too late, Ian was hungry for real (I would know this because right before hitting the steps, he fished an old yogurt cup out of the trash from last night and was licking it clean). Good memory - at least we don't gotta worry about that!

It was a challenge to get his plate and still hold onto him. He just does not do carrying yet. H also does not getting have to wait for food once you SEE it, he screams. We finally made it to the only empty table, and by then we were on full display. This also is starting to wear on me. First day, I could have cared less. Second day, we didn't stray too far. Today, I about had it. I'm not used to this. Ari has Autism, you can't SEE that on his face. Ian is the opposite.

I just wish they all knew what this photograph means. It's a little boy experiencing SO much all at once, and he's doing just fine. He ate in a fancy restaurant and stayed quiet. He didn't throw anything or yell and I was able to LEAVE him at his seat, eating nicely, while I fixed my own plate and grabbed a cup of coffee, which by the way is in ANOTHER ROOM where I can't see him and he can't see me. Incredible.








I tried really hard not to respond to the stares today but broke. I turned around and stared right back at one person who was just over the top with it. It was a teenaged kid. Old enough to know better, but being raised in a culture that teaches him its okay to stare at Ian. Hard to deal.

I posted this quote on my Facebook right before I left and it just rang so true this morning (thank you Debbie Marks for reposting this so I could grab it)





I am also reminded of this line from a favorite movie of mine, the updated Cinderella with Drew Barrymore when she's a common person talking to the Prince about a man wrongly jailed she says something like, how can you punish someone for something you have caused? For Ian, here, it's like how can you think him wild and unkempt, strange and a nuisance, when this is the life you have predisposed him to by suppressing him and others in ill resourced orphanages their entire lives? How else do you suppose he is going to act?

Too, being here with Ian, in Russia, where everyone would be staring at us anyway because we are Black, the special needs stuff is almost secondary, although I do notice that they are plainly staring at HIM and not me as much as when I am walking around by myself or with Craig. Craig draws a big crowd here, they think he's an American R and B music star - LOL, its the Ray Ban's for sure.

Suddenly, I have a little boy in my midst that is processing so fast as to be able to get it and do it. He ate his first breakfast in a real restaurant and did it fantastically. Makes you know he was never meant to be where he's been. Shame on so much.

Eating is, um, survival mode at best. It's sad and depressing and again makes me so sick at what we as a human race have let happen here, to Ian. He has had very little solid foods in his life. He does not know or understand how to chew foods. If it's not mushy or mashed or soupy, he's not going to understand what to do. He licks meat and then tries to flatten
and squeeze it between the roof of his mouth and tounge. Then he just swallows it whole. He swallows whole anything not mush, including banana pieces. I am having to micro cut up his food or he'll choke on it, mushy included. He attempts crackers but gives up quick. He attempts bread but if its not super soft where he can turn it into mush in his mouth to swallow whole, he won't eat it.

He's used to slurping up slop. I don't even wanna tell you what his eating sounds like, you'll lose your lunch more than likely.

Ian has table manners, he spills very little, its the mouth area and hands that are a mess. He eats like a staving kid, and drinking is worse. He spills most drinks out of his mouth because he's trying to drink it all so fast.

After breakfast, we went outside to the park. He had a great time again and finally got to chase the birds and yell - the park was empty:)




















We stayed until a whole bunch of kids arrived. This was the look on his face when he saw them! Ha! I know this look well, Ari would have had the exact same look on his face. I swear those two are kindred bro's.








After the park we went back to the hotel for a little while. Ian loves to play in the hotel room with the furniture. Now, don't freak out, I was right there with him - he "built" this little "activity" all on his own. He moved the rolling ottoman over and then the end table, placed them together and then get this - you'd think they were meant to be steps to get up into the window sill. They are not. What he was actually doing, repetitively, was placing one foot on the end table, balancing (which is hard for him), and then placing his other foot down on the table right next to it, and vice versa to step down onto the ottoman.

Suddenly, I realized the kid has constructed his own self made physical therapy equipment, to work on balance, which he NEEDS - WOW, he's fixing his own deficits. TEARS!

He never once went for the window, or even to step on the sill. He worked on it till he was tired. No therapist needed.




This is him examining the furniture. He likes to look under everything that he can manage to lift, which includes the twin mattresses on our beds! He's very strong.




Ahh, now this is a classic. While cleaning up the room to move (oh yeah, the phone rang, it was reception telling me we need to get out of our room and move to another one because the shower glass is broken). Hmmmm, wasn't broken but okay.

Suddenly, while looking for all his toys, I saw this:




See that yellow thing? Yeah. It's a part to a toy, jammed in tight to the space between the TV and the TV holder. Good thing maintenance was already in the room fixing the not broken broken shower door so I could have them get it out. There were actually two under there. I know what he did though, and it's just another clue that Ian is spectacular.

He has a toy, a little fake CD player with these little fake plastic CDs. It actually plays music. Anyway, he thought they were DVDs. He knows about DVDs because they have a DVD player in the orphanage directors office and he has examined that thing, I saw him peering into the slot in the first photographs of Ian I ever saw.

After moving rooms, we went out and I properly initiated him into the "mommy's got an addiction to coffee" ride along club to the local wanna be Russian Starbucks, aptly names "Coffeshop Company." LOL, in the same font as Starbucks.




Daddy, you'll be pleased to know that he ordered a "sok" or fresh made (just juiced) apple juice. He drank it all and loved it. Now you've got two juice helpers.




We people watched and ordered some lunch, which was where I observed him sucking on the meat and swallowing it whole (pieces of ham). He is not used to sitting in someones lap and being still, so this was a good start on all of that. He did pretty good, but had some moments, especially when my delicious looking Latte arrived, he really wanted some and he suddenly screamed out.

We went back to the hotel and he took a nap. He's potty trained but only trip trained, he won't initiate. I thought he was good but whups - we had an accident during nap. So, now we wear pull ups during nap as I don't think the hotel was too happy about having to change the sheets. Oh well.

They napped for 2 hours from 1-3 at the orphanage. What I wound not pay for Ari to nap like that! Ian naps with me too, but you have to lay him down. Nap was late today and I paid for it, he got too tired and VERY irritable. I won't make that mistake again soon.

Ian's a little perfectionist. This will counter Ari's utter disregard for anything that resembles order or neatness just perfectly. Suddenly, Ian's going to be a teacher. He is after all, older than Ari and he will for sure assume the classic big brother role in some things.

Get this. The kid can fold - almost PERFECTLY, a TWIN size comforter. He folds his clothes PERFECTLY. You know how you fold a sheet alone? using your CHIN to hold it while you gather some of it up? HE DOES THAT! He also folds his toilet paper before wiping his bum - but that's another story.





We had a friend over to the hotel this evening, Boris. Yep, THAT Boris from a bunch of my other posts. We had some things to take care of logistically and then, knowing he has three kids, I gave him a pair of brand new New Balance kids shoes that were too big for Ian. Elena told me that kids shoes like that are $100.00 here. They cost me $17 bucks on sale. To say he was grateful would be an understatement. I take so much for granted.




Boris couldn't believe that Ian had Down Syndrome. I mean he said the words to me that yes, you can see by his face that he does, he has the facial features associated with Down Syndrome but his behavior is so close to that of a typical 5 year old boy. Boris was simply captivated with Ian, he loved him instantly. Ian really like having a guy around, and I think once we get home to papa, he will be so much better. He's had nothing but women around his whole life. Look out Craig, here he comes!

After Boris left and we ate some Tuna, suddenly the calm before the storm was gone. Ian slowly melted down. I wondered if and when it might come, and it was last night. The most difficult part of all of this is that I am kind of conflicted about how to manage him. On the one hand, I feel like the kid should be able to do whatever the H--- he wants to do because of what he's had to endure. We all know however, I just can't do that, he'd never listen to me again and our time here and on the plane home would be a mess. I have to parent him.

So, I am always wondering if I'm being to hard on him. The screaming and kicking is hard, and the deliberate throwing and hitting is also working my nerves. We communicate using gestures, I model for him, I can speak a few words, and he can say no and yes in Russian. He gets it all though, he's VERY SMART. Being so, it is also hard because I know he is testing and I know he understands. I also know that stubbornness is a characteristic of Down Syndrome so I struggle with how much to make him tow the line.

Ian knows not to whip toys across the room, he knows this. So, time out is in full effect. I sit him on the bed and take his favorite thing - the toss away slippers they have in the hotel room. He lives for those adult sized paper thin little things. He hates it but he gets it. It's no guarantee he won't repeat the behavior that got him there in the first place though.

The kids all got yogurt as a snack right before bed time, go figure, we won't continue this at home but for now, so that he does not loose everything he has, he get's yogurt before bed. He LOVES it.




Craig, who does this look like? ARI right! I know, uncanny.




This was a topsy turvy day. In the end of anything though is that I have to keep it together, there's no other choice, so that actually helps, I couldn't fall apart if I wanted to and I had better get right so that I can take in all of the miracous moments that are happening here.

Okay, let's do that.

Today I cursed myself for forgetting the handpicked bedtime stories I had in the que at home to pack for Ian. I had not read to him because I had nothing to read, so bedtime was some hugs, kisses and lay down. Partially, the routine I kept a little bit sterile because he won't go to sleep if I don't, he'll play all night and then we will both be in for a horrible day the next day, I do have one of these at home for almost 5 years now!

Tonight, Ian suddenly made magic happen and I swear to you it was God sent. Here I was lamenting the non-existant story time books and Ian "calls" me over (he does not speak really, he grunts and screams and laughs and can say DA, that's about it). He's vocal, it just is not in words. He does have this one sound, like "toe-ah" that he makes for asking questions and to say he wants something, and then its game on to try and figure out what he wants.

So he started with the toe-ah's and was gesturing me over to his bedside. He then, when I was close enough, reached up to give me a big goodnight hug - WHAT? WHAT? - oh sweet sweet child! First time unsolicited!

There is one last part to the night ended but ya'll, I'm tired and I gotta take Ian outside before nap time. We both need some air. It's cold and raining again, but we'll go anyway, I've got all the attire and a rain cover the stroller.

Thank you all for all of your support while I am here alone. I'm starting to see the light but it's still more than a week away. I'm fighting plane ride from H--- images in my mind so please say a special prayer for that to go well.

Have a great day, Ian and I will:)





Posted using BlogPress from my iPad

Location:13-я линия,St Petersburg,Russia

5 comments:

  1. HI!! Wanted to introduce myself. My name is cara I am Momma to Alanna, home 4 months from Ukraine via RR. I also have a daughter from St. Petersburg!! Alanna stims a lot too, it's heart breaking. Ian is precious. We will be at the Atlanta Buddy Walk, I look forward to meeting you!!

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  2. Hi again,

    I've worked with kids with Down Syndrome for years--and learned something from a mom (she adopted many kiddos with DS)--she had them all tested for sleep apnia because her developmental pediatrician suggested it after she talked about some of the problems they were having sleeping and so forth (sinus). Made a HUGE difference. Every one of them was diagnosed with it at some level. I guess kiddos with DS (because of the way their faces are shaped) are more prone to have it. So--when you described how Ian is sleeping it made me think you may want to have that checked out once he's here. Of course--the tongue/hand behavior/sucking doesn't help--but if he needs a cpap--that may eventually have to go away. Also--maybe he's self-stimming on his ears--and having balance problems because he has some ear issues with the balance parts of the ear? Or he may get a little vertigo? This may be harder to figure out--but often children self-stim based upon where they need specific pressure, or where specific "disbalance" is occurring in their body. You probably already know this, having Ari with autism--but kiddo's with DS can have similar muscle/vestibular/sensory issues, especially considering the tone issues they usually have. I was working with a parent once, whose little girl with DS kept patting/hitting her own face (she was about 18 months old at the time)--so, we talked about massage--I started rubbing the baby's face--and suddenly, she went from hitting her face, to looking at me intently, listening, smiling, and was peaceful. I also rubbed her hands too--but the mom was very happy to see that facial stimulation/pressure/massage seemed to help. Something like that may help Ian too. Hopefully a good OT with sensory background can help :) You're amazing--and so is Ian!!!

    Thanks for letting us read your story!

    Mary

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  3. He is so beautiful!! I am officially your new stalker. ;)

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  4. I have been waiting all day to be able to read your new post today!!! It just makes my day when I do, so tonight you made my night! I can't stop thinking what an amazing little guy Ian is, even after all he has been through, he still showing the world what a beautiful person he really is. You both are in my prayers everyday!!! Can't wait to read about tomorrow!!!

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  5. Love reading your updates!!!! I can't wait to meet Ian!!! Maybe he is saying "tozha (тоже)" which means "too". Like "it too" or "me too." Praying for you!!!

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