Sunday, December 26, 2010

School Days, Snow Days

Vitals: Words cannot express how busy it has been here.  Bill and Roman are home.  I desperately needed to go to the grocery store and shop for presents before Christmas, but I wrote this entry while waiting for Ruslan’s dental surgery the week before Christmas. 

Wednesday, December 15th:   Ruslan has been going to kindergarten for about two weeks.  After the first few days we had an initial meeting with a bunch of specialists to decide how to “serve him best.”  We had a follow up meeting Dec 15th. I am still trying to decide how it went.  There are a TON of people seeing him.  The kindergarten teacher gave a report on his progress, then we also heard from the PT, OT, ESL, Speech Therapist, Guidance Counselor, Spec Ed teacher, and two others who remain undefined.  The meeting was fine, but I was surprised to hear about how many people meet with him.  The kindergarten teacher told me that she only had him in her room for thirty minutes a few days and I was starting to see why. 

As we talked about how many one-on-one appointments Ruslan has each week, I was getting a little annoyed.  It’s no wonder that he is wiped out by noon.  How many adults can handle one-on-one appointments back to back for four hours?  Everybody’s got their hands on the little guy.  My point, when they finally got around to me, was that since he spent his life in an institution and everything is still quite new to him, I would really rather that he just spend his days in the classroom and following a fixed routine so he knows what to expect each day. 

I’m not sure that I actually got through.  One of the reasons he’s been out of the room so much is that all the specialists had a limited number of days to evaluate him before the official IEP (Individualized Education Program) meeting for him sometime in January.  So, I know a lot of the meetings were for evaluations.  I didn’t really get any of his appointments reduced.  There is one teacher that he meets with three times a week regularly and I really don’t know WHAT she does.  I’d like to just end those meetings, but Ruslan seems to like her so I’m not sure what will be best.  Just thinking out loud, I’m leaning toward asking for her to stay with him, but keep him in the classroom.  I just don’t think, with all this pulling him out of the classroom, that he is getting a chance to just be a regular kid.

They answered the problem of no-fixed-schedule by making him a picture board with photos of all the people he meets with each day or pictures of his activities like circle time, lunch etc.  In the morning, he and his aide discuss the board and all the things he will do that particular day.  I decided to go with this, since, again, they assured me that there will be less out of class time now that the evaluations are over, but I am not totally comfortable with a schedule that is so varied day to day that they put the pictures on Velcro so they can move them around. 

The second thing that was a little surprising about the meeting is that they are going to hire him a full time aide, just to be with him one on one—all day long.  I don’t think I can really refuse this.  The kindergarten teacher especially is not comfortable with him crawling on the floor in the bathroom and they kept referring to that, plus transition times as the reason for the full time aide.  But, he only goes to the bathroom maybe twice a day.  And he certainly doesn’t have a full time aide at home.  I am worried that he will become passive and stand out all the more with an aide by his side all day long. 

However, that was the outcome of this meeting and I have to say that overall, it’s remarkable that I am concerned that they are giving him too much attention rather than too little.  They are definitely invested in his success. 

In most other ways, Ruslan has been fitting well into his new routine, with the family and he seems happy overall.  I normally pick him up from school at 12:00 and he is always glad to come home.  He shrieks “MAMA!!” when he sees me (which is a little embarrassing) and usually gives me one of those hugs that makes me think he is trying to re-mold me like I’m a piece of playdough. 

December 16th: School was canceled that next day. Things were going well until it snowed here.   I needed to at least pick up the house and catch up on laundry in the morning and he was just DYING to go outside.  The kids were too wired to watch him well and they wanted to play with their friends so badly that I told them I would take him out myself.  I got him bundled up about 10:00 in the morning and let him play in the front yard for 20 minutes, but it was a short trip and only made him eager for more.  I finally got out with him at about 2:00.  I planned to stay out until about 4:00 and get him good and tired. 

The kids were sledding on my neighbor’s hill.  We walked across the street (10 minutes) and got him on the sled with his brothers (5 minutes).  He was in front and so excited he was shrieking.  I pushed them down the hill and they went flying.  When they got to the bottom (30 seconds) I thought he was shouting for joy, but actually, he was only screaming for joy until they ran past a short bush and he got a scratch on his cheek.  The screams at the bottom of the hill were pain, not joyful.  So, I brushed him off, told him he was OK (5 minutes) and we walked back up the hill (20 minutes).   He wouldn’t go down the hill any more, but about that time our new neighbors came out with a four wheeler and a sled attached to the back.  He gave all the kids rides down the road (it was totally unplowed, this is Virginia) and back.  It must have been really fun because Ruslan loved it. 

I stayed out with him until he was so cold he was just shaking.  Unfortunately, the other kids were still OK so it looked like I was taking Ruslan in early.  However, he was freezing. It was about 20 degrees outside and he had been out for 90 minutes.  So, long story short, I took him inside.  This did NOT go over well.  He started screaming as soon as we got in the door and by the time I got his snowpants off, he was hysterical.  I took him up to his room because I didn’t want him to think the screaming/yelling was OK, but he kept right at it.   It was another full blown tantrum. 

I planned to let him cry it out and check on him every ten minutes or so, but he was really hysterical.  Plus, the neighbor kids started coming in about ten minutes later, asking for hot chocolate etc. and none of them had been exposed to this kind of tantrum in a kid this old before and he was really loud.  So, since counting had worked so well lately, I told him that he had to calm down and I started to count.   I don’t know what I was planning to do when I got to three, but it doesn’t matter, because as soon as I said, “one, “ he started hitting himself in the head with his fist and saying, “Mama, Mama,” with the implication that I had or was going to hit him in the head with my fist.

NOT COOL.  I grabbed his hands and told him that I have NEVER hit him in the head, nor would I EVER do such a thing and he knew it. He stopped crying, nodded yes and yet, as soon as I let go of his hands and he started screaming again and hitting himself again and this time he said, “Matt, Matt,” implying this time that Matt (my 13 year old) was hitting him in the head.  So, I grabbed his hands again and told him that, “NO, Matt has never hit you in the head.”  He stopped crying, nodded, “yes,” and when I let go of his hands this time, he did the same thing again, but saying, “Paul, Paul” implying that Paul was hitting him in the head.  And so it went, all through all the people in our family, each time me holding Ruslan's hands and reminding him that, “No, no one here hits you in the head.” Yet, as soon as I would let go of his hands, he would hit himself in the head again and move on to the next person. 

So, that was annoying.  He finally got through all the family, (he skipped Bill, who was still in Ukraine at the time) and when he finally ran out of family members, he seemed to calm down, plus he probably heard the kids downstairs so he felt better about being inside.  I let him out of his room, and he did fine the rest of the day, but man, that was annoying.  I’m still annoyed with him over it. 

Bill flew home that day.  He landed about 4:00 at Dulles and rented a car.  He got here about 8pm.  I was glad to see him and he was glad to be home, but everyone was so wiped out, it was a rather undramatic homecoming.  He put Roman to bed right away and crashed himself about ten minutes later. 

Friday December 17th:  Ruslan’s teeth were so bad that the doctor suggested general anesthesia for his dental work.  She does this once a month on Fridays and December 17th was Ruslan’s day.  They pushed his appointment time back two hours because of the snow, but thankfully, kept the appointment.  Unfortunately for Bill, school was cancelled again and he was home with the kids and his jet lag for company, but they all got through it. 

Ruslan handled the dentist really well at first.  They let me hold him while they put him under and the dental work took about an hour.  (Two cavities filled, one tooth capped and one pulled.  That, plus the general anesthesia that was not covered by insurance and I am so grateful I was raised by depression-era parents who taught me how to manage money!!)  However, he did not recover well.  On the way home, he spit up three times.

Apparently, the area from the pulled tooth was bleeding quite a bit and he spit up blood that he had been swallowing.  The first spew was a huge blood clot, about the size of a golf ball.  Disgusting.  The dentist told me he would sleep off the anesthetic, but he was awake and miserable most of the afternoon, vomiting about every thirty minutes over the next four hours.  He kept claiming to be thirsty, but everything he swallowed, he vomited back up.  It was worse when his stomach was empty, because then he got dry heaves. He really didn’t seem recovered until well after dinner time.  The only consolation was that when all the kids went outside to go sledding, he didn’t complain about staying inside.    

Bill and Roman spent most of the day sleeping off the jet lag. 

Monday, December 13, 2010

Unintended Consequences of Institutionalization: Helplessness and Hoarding

Vitals:  Bill is still in Ukraine.  I'm home making room for child #2 and Ruslan's life hangs by a fragile thread.

Details:  So, I thought I should write about how Ruslan is doing since I haven't seen to much harsh reality on many of the blogs out there.

In general, Ruslan is doing well.  He seems to like school, although he prefers to stay at home.  He is eating well and knows that he has to finish his plate in order to get dessert.  He usually balks over one or two items each meal, but eventually, after a considerable amount of him whining and us ignoring him, he gets it all down.  He is extremely affectionate with me and all the kids and does a reasonably good job of stepping back and entertaining himself when I tell him they need a break. 

However, we are currently are dealing with two problems.  One is dressing.  The other is hoarding.

I know from our visits that Ruslan never had to dress himself in the orphanage.  We arrived early a few times (when they didn't expect us) and saw Ruslan passively laying on a couch while the ladies bundled him up for the day.  Considering the number of layers they piled on him, I guess it's no wonder they dressed him, since it would have taken him half the day to get all those clothes on.

Nevertheless, one of the first things we did was teach him to dress himself.  This is painful for everyone involved.  He can't sit up unless he is "W" sitting and you can't get dressed in a "W."  So, he has to lay on his back to take off and put on his underwear, pants, socks and shoes.  Then he gets up in a kneeling position and puts on his shirts. The whole process takes about ten to fifteen minutes and that is if he gets right to it without stalling.  He doesn't really like to dress himself, and he definitely doesn't like to be alone.  However, if I stick around, he just spends time whining and trying to dodge the deed so, it's easier on everyone if we get his clothes out and I leave the room.

Since I am taking the kids to public school, we have a limited amount of time for them to get ready in the morning.  Thankfully, we are all early risers, including Ruslan, so this is usually not a problem.  However, one morning last week Ruslan decided he didn't want to dress himself.  He was in his room and we had picked out his clothes, but he insisted that I dress him.  This is NEVER going to happen.  I usually leave him to get dressed alone, and peek in on him every few minutes which speeds up the process.  He usually makes good progress but this morning, he did NOTHING. 

Well, I kept telling him to get dressed and he finally just said, "No."  He pulled this over the weekend and I just left him in his room until he finally dressed himself, but this was a school day and we had limited time.  So, I started to count, and, since he was being so belligerent and we were running out of time I gave him three chances to get started and finally spanked his butt, once with my hand.  This is the only time I have spanked him.  He was more surprised than hurt, but let me tell you what, he screamed to high heaven.  I closed the door, doubting myself and certain that I had scarred both of us for life.  The next time I peeked in, he was dressed.  Such a miracle.

I thought the issue was over so, I praised him up and down and took him to the living room to put on his socks and shoes.  Wouldn't you know it, he didn't want to put his own socks on either.   You would think he had enough!  I certainly had enough.  Compounding the problem was that we were running out of time.  I started to count again but he STILL would not put his socks on.  SO, I gave him another three chances to get started and when we got to three, he got a second spanking.  Remarkably, he put his socks on immediately after that, but then he didn't want to put on his shoes.  I was beyond the point of praising him over the socks and we were officially out of time.  I'd really had enough.  He was whining and telling me that he couldn't.  He needed help.  He was in pain etc. etc. etc.  We didn't have time for him to put on his shoes and I would have DIED before I did it for him, so I made an executive decision and took him to school shoeless.

I passed him off to his teacher and handed her the shoes.  I told her we had a standoff, he needed to put the shoes on by himself but that she could handle it any way she wanted to.  She was so great.  She just said to put him on the rug and she would take care of it.  On the way out I made some comment to the assistant teacher about the morning and she said, "well, everybody's entitled to a bad morning now and then."  God Bless Her!  That statement sort of snapped me back to reality.  I realized she was right.  I was so annoyed with how things were going, I was ready to strangle him.  I wouldn't be surprised to learn that God sent her specifically to restore my sanity. 

The next morning Ruslan woke bright and early.  After we picked out his clothes, I left the room, just like the day before.  I peeked in on him a few minutes later, expecting a second stand off, but lo and behold, he was dressed and smiling.  I'd like to say the problem was solved after that, but just yesterday I had to put him the the car for church without socks and shoes.  He finally put them on himself in the car.  The beat goes on...

The second problem is hoarding.  We have a ton of books here.  Ruslan found a bunch of gift bags in my closet and has been gathering all the books off the bottom shelves in the house, taking them to his room (pushing them in front of him as he combat crawls) and storing them in rows and rows of gift bags on his floor.  I let it go until I couldn't see the floor anymore.  I talked to him about it over the weekend (never really knowing how much he understands) and explained that we had to make room for a bed for his brother.  I finally put the books on shelves in his room one day while he was at school.  He took this really well and I can't decide if that means he really doesn't care or he really hasn't noticed.  He still has most of the books, they're just on shelves now.  The kids have been great about letting him keep them there.  So, the book thing went off OK, but the other problem is everything else he is hoarding, which amounts to anything that he both sees and wants.  Things keep disappearing and I keep finding them in his room.

I think I am going to have to sort through the stuff in the gift bags and hide them.  It's really a pain to dig through them all, and I hate to destroy his collection, since I suspect it brings him some comfort, but it's starting to get out of control.  I'm not sure whether I should do this with him in the room or do it alone and hope he doesn't notice.  I'll probably do an experiment with one or two bags and see how he handles it. Wish us luck. 

Thursday, December 9, 2010

Boxes, Birthdays, Bend-a-glows and Bathrooms

Day 12 to 21.  Good Grief.  We looked at the calendar EVERY MORNING in Ukraine and the days were slow as molasses.  We've been home three weeks now and it seems like only a few days have passed.

This is probably because I've barely had time to breathe.  Here is what's been happening, in no particular order.

Bill stayed with us the week of Thanksgiving.  Then he spent the second week in Houston, TX for some sort of meeting, returned home for the weekend and left on Sunday afternoon for Ukraine.  He went back to get Roman (boy #2) and is there right now-- patiently enduring the indescribable suffering of life in Kyiv. 

Actually, he's pretty miserable, so pray for him.  They hit trouble on the second day.  Our facilitators forgot that they needed a notarized, apostiled paper from me to get Roman's passport.  They finally decided to try to get it using the power of attorney that I sent a few months ago.  We should know if this will work by this afternoon.  If it doesn't work it will mean another delay for Bill and we'll have to decide whether to fly him home or have him wait it out over there. 

We've been debating this on line.  It's 5am here and about noon in Ukraine.  Bill is with Roman at some sort of office making the initial application for his passport.  We started texting when I woke up and Bill just sent me these pictures of Roman.

So amazing, that we live in an age in which I can get an instant photo, wireless at 5am.  I suppose it's no more amazing than skype, but the fact that he sent this from his PHONE and I got it instantly on my laptop, that I'm writing on in bed, still amazes me.

Anyway, all that is to say, Bill is gone and should be back Thursday, December 16th, if everything goes well.  ...yeah. 

In the meantime, I've been helping my neighbor move.  This is my-neighbor-that-I-love and I must say, I don't merely love her, I adore her.  However, she does have this one teeny-tiny little personality quirk....she's a hoarder.  Her entire life is packed away in boxes in her basement and attic: bags and bags of stuffed animals, toys, decorations, books, awards, tools and everything that anyone in her family has ever bought or touched.  As far as I know, she hasn't gotten rid of anything in thirty years.

The neighbor ladies have been taking turns going over there and helping her box up her life.  If I couldn't get over there in the afternoons, I snuck over after the kids went to sleep.  You may wonder why I haven't been writing.  It's because I've been boxing.  The idea of throwing anything away or sending it to Goodwill is out of the question.  So, her husband rented the largest model Ryder truck available and we set to packing.  A move that we all thought would take a few days has extended from the day before Thanksgiving to well into December and they're still only half done.  The first day they moved out the furniture.  Since then, he's been back for another three full loads of stuff and there is easily enough stuff left for two to three more Ryder truck loads.  ...They have two houses where they are going.  One to live in and one for storage.  It's all good. 

Luckily, Ruslan has been moderately easy, mostly because we hit a bottle neck.  No one in the medical community would TOUCH him until he was seen by a doctor.  Finally, on Tuesday, December 7th, Ruslan got a general physical (for a low, low price that my insurance is paying) and I got a piece of paper stating that my boy has CP.  Never mind that this fact is intuitively obvious to the casual observer.  It MUST be written on the piece of paper.

So, now that we have the glorious paper, I have a whole ton of appointments lined up starting tomorrow with PT, then the OT, a speech and hearing specialist, a guy to get him a walker, some sort of orthopedist, and, once I show it to the people at school, I will be able to get him officially recognized as special needs and on a public school bus....nervana.

Besides the move, Reilly and Sharon both had birthdays in Ukraine.  Reilly turned ten and Sharon turned seven.  We decided to just get them a cake and postpone the real celebrations until we got home.  Therefore, we had Reilly's birthday about a week after Thanksgiving and Sharon's a few days later.

We always get our kids three presents for Birthdays and three for Christmas.  Reilly is pretty easy to buy for.  She just says, "surprise me."  However, Sharon is very specific and gives me lists with long descriptions and in this case, two web sites.  I had to order her presents on line and wait while they were shipped here, thus explaining the two week delay.  Just my luck, one of her presents was "Bend-a-Glows.  These are actually glow-in-the-dark pieces of string covered in wax.  $19.99 for something like 600 of them, plus shipping and handling for a total of about $30. 

How annoying.  Nevertheless, she had been so good all through Ukraine that she certainly deserved a good birthday.  I whipped out the credit card and placed the order.  The next day,  I saw them at Wal-mart for $15 for the same box of Bend-a-Glows....of course.  Two weeks later, we'd put off the birthday as long as possible and the mail order box still hadn't come.  Bill was leaving that afternoon for Ukraine and it was do or die trying.  Sharon is wonderful.  She probably would have been fine if I told her they were on order, but I hated the idea of giving her only two presents, especially when I had been giving her less attention than normal and she has been so good about it.  So I ran to Wal-mart and got the $15 box, thus spending $45 total on a bunch of colored wax and string.  If anyone wants an extra box of Bend-a-Glows, just call me.  They arrived the next day.

The $45 thing bothered me UNTIL I was hit with another bill.  About a week after we got home, Ruslan clogged the toilet. He was in there for a few minutes longer than normal and just after he left, the toilet would not flush.  The bowl filled up to the rim and I spent a considerable amount of time with the plunger and a plumber's snake, trying to get the thing unclogged, but no luck.  I had to wait for Bill to come home from Houston.  This wouldn't have been such a big deal, but we live in a two story house and my boy had clogged the tiolet on the first floor.  I now need to carry him upstairs everytime he has to go potty.

I picked up a new wax ring and Bill took apart the toilet Saturday morning.  He lifted it off the base and found a whole ton of poop covered barrettes and hair combs that Ruslan had grabbed from the girls hair-stuff drawer and flushed down the toilet.  So, Bill cleaned it out (disgusting) and when he went to screw the toilet back on the base, he realized that the flange that holds the toilet to the floor was cracked.  We needed a new one.  

The plumber came Tuesday.  He changed the flange, replaced our toilet, flushed once, and then called me into the bathroom because our toilet was still clogged.  Apparently, Bill had not gotten all the barrettes out of there because it was not flushing.  He tried to unclog it with a roto-rooter, but no luck.  We need a new toilet. 

In the meantime, the kids have covered the bathroom in Bend-a-glows.  Since it has no windows, it's the only room in the house that gets completely dark.  I'm leaving them up because i figure they will shed some light on the plumber when the electricity goes out.