Hell Week (Part Two) and Beyond

Vitals:  Week of Jan 3 to 9 and a few days after.

Details:  So, just to clarify, Ruslan is the 7 year old, bright intellectually, but with major physical disabilities.   Will (who used to be called Roman) is the 5 year old, more or less able bodied, but dumb as a post.  Besides Will, we also occasionally call him DAPATAC—“Dumb As a Post And Twice As Cute,”  --a remarkably fitting description. 

We are now up to Thursday morning, Jan 6^th.  In the last post, I focused on Will, but Ruslan made his own distinct contribution to hell week.  My boy was flat out spoiled in Ukraine.  I don’t know what those caregivers at his orphanage were thinking, but they made a MESS of my child emotionally. 

One example of this has to do with dinner.  My ten year old Reilly had been asking constantly if she could carry Ruslan.   I always say, “no” because he is really hard to carry.  He doesn’t know how to hold his body close to his carrier’s body and at odd times, he will jerk his body backward so you really have to grab him tight to avoid dropping him.  Plus, he’s just plain heavy.   Early in the week, I had put him down for a second (propping him up so he could hold himself standing) and Reilly asked if she could “take” him to another room.  I thought this meant that she would let him walk holding her hands, but she meant to carry him.    So, before I even knew what was happening, she had picked him up.   He almost immediately jerked his body backward and she dropped him.  It looked like his head hit the ground first and it was onto a hard floor.   He immediately started to cry and I know it hurt.

I picked him up and held him while he cried for a few minutes.  We got him some ice, gave him Tylenol and eventually he stopped crying and just settled in for a low whine.  There was no bump on his head, his  pupils were fine and he was answering questions appropriately.  So, even though he was milking the thing for all it was worth and whined for at least an hour, I finally decided he was probably hurting a little bit at first, but essentially he was OK.  As the day wore on, the whining stopped and we all forgot about it… until dinner time.   Ruslan told us he couldn’t eat.  It hurt to chew anything because of his “ouch.”  Every time he took a bite he would whine and cry and say, “ow, ow!”  He wasn’t very convincing and I have to admit that after three months of his whining, I have lost a good bit of compassion for him.  But, in cases like this there is always a nagging question in the back of my mind about whether something is actually wrong and causing him pain (never actually been the case, but you never know) or if he is just being manipulative.   

At any rate, Ruslan didn’t want dinner.   We all started to ratchet things up with Bill and me telling Ruslan he had to eat and Ruslan whining all the louder that his jaw hurt.  So, in a rare instance of brilliance, I gave Ruslan a few “gummy fibers” that I had leftover from Ukraine.  These things are huge, about the size of large gum drops, and they are GUMMY, hard to chew, and require a lot of jaw effort to break into pieces and swallow.  They are like giant, stale gummy bears.  Ruslan loves them.  As soon as I gave one to him he broke into a big smile and started chewing right away on the very side of his mouth that “hurt” with nary a wince nor tear.  The same with a second piece and so, after he was done, we pointed out to him that he had no trouble chewing them and told him he had to finish his dinner.  (HA!)  Ruslan is smart enough to know what was going on.  So, like a good institutionalized Ukrainian, he started off with a low whimper and escalated into a full-blown shriek within about 15 seconds.  We finally had to take him to his room where he took 20 minutes to cry and scream out his anger.  When he was finally quiet, we took him back downstairs to finish his meal, which he did without compliant.

The next day, he came home from school with a letter page in which it was very obvious that he was supposed to trace over the letters.  Instead, it looked like he just took a pencil and scribbled back and forth over the page.  I showed it to Ruslan and told him it was not his “good work.”  He started to whine and then cry saying, “teacher OK.”  As in, “My teacher said it was OK.”   But I knew he could do better. 

I put him at our small table in the kitchen and told him to finish the paper.  Well, he cried and cried and when that didn’t work he started screaming and SCREAMED and shrieked at the top of his lungs.   SO, I moved him and the little table into our front room and shut the door.  He SCREAMED and shrieked full on for another ten minutes straight as though I was torturing him with hot iron rods.  Bill and I both commented that this was the loudest he had ever screamed so far.  I was sure the neighbors were going to call us or the police when he suddenly got quiet.  Just like that, it ended and he started to work. When he was half done, he called me in.  

He had erased the scribbles and traced about half the letters.  I told him ‘great job’ and he asked me and Reilly to stay in the room with him while he finished, which was fine.  He got to most of the letters and was done in less than ten minutes.  It’s not perfect, but MUCH better than scribbling back and forth across the page.  His teacher said it was “morning work” and so there probably wasn’t anyone around to keep him on task, but even so, he knows full well what he is capable of.  He just didn’t want to do it.

Afterwards, he was so proud of himself, his smile was about to split his face in two.   We took him and the paper up to show daddy and then he asked to put it on the wall in his bedroom.  So, obviously in both cases it ended well, and Ruslan was able to make his own unique contribution toward hell week.  I thanked him, for it wouldn’t have been complete without him, then I went back to trying to make phone calls and chasing Will throughout the house.

A few of the phone calls I made were to our local public school (another exceptional donor).  I almost put this story in a separate post entitled, “Why Parents Homeschool; A Message to the Establishment.”   But, things have been working out OK, and it all happened in the same week, so I’ll just go with a short summary here for the sake of the other special needs parents who read this blog.  I wrote already about the school hiring a full-time aide for Ruslan.  Well, the interviews for the aide were on Monday.  Since this person was being hired specifically for Ruslan, I made a quick call to the principal to see if I could get in on the interviews or at least give some input.  From the response I got, you would think I had asked for the moon.

It wouldn’t have been an issue if Ruslan wasn’t such a master manipulator.  If you have a child in a wheel chair, the natural instinct is to over compensate and “do” for them.  Combine that with Ruslan’s habit of trying to get out of hard work and his winning smile and you have the perfect training ground for a helpless little emperor.  For example, I learned early on that he had been allowed to skip eating his school lunch and go right to dessert (which I am sure he loved, but ended ASAP), then there was the “I-can’t” syndrome (explained above) and the need to make it clear that he could really do almost all that an able bodied child can do (like hang up his own coat), which isn’t really obvious from first glance.  It’s just not natural to expect a child who can’t walk to hang up his own coat, but he needs to be expected to do these things and learn some self reliance.  His biggest need is help with transitions/position changes and maybe someone to keep him on task.  So besides giving input on the choice of aide, I also wanted to talk to her for a few minutes and monologue all I could about his needs.

From their perspective, it was a “question of boundaries.” From my perspective, it was “absolutely a question of boundaries and let me be clear, there are NO boundaries between myself and my child.”   So, we duked it out a little bit on the phone and they made it clear that they would not welcome my input.  I found this fantastically annoying.  I asked the principal if she had spent any time with Ruslan, which of course she hadn’t and neither had the assistant principal.  They were adding his teacher to the interview team, which I appreciated, and so did the teacher.  As she put it, “I’ve spent time with him and know the kind of person he needs,” but she also acknowledged that there were some days that he had only spent thirty minutes in her room because he left quite a bit for testing and activities.  As his mom, I had spent MORE time with him than the teacher and since they were hiring the aide FOR HIM, my input seemed reasonable.  That one point became particularly sticky since apparently the aide will occasionally have other duties so I had to spend the rest of one conversation referring to his new aide as the hyphenated, “person-who-will-be-spending most-of-the-school-day-within-five-feet-of-my-son.” 

It got even stranger when one of them said, “well, if we let a parent in on something like this then parents would want to give input on every decision…”   Of course, as a parent, I think it would be right and proper for parents to be involved in every decision.  As taxpayers and citizens (federal, state and local taxpayers), we own the buildings, pay the salaries of the teachers and elect the school board who ultimately hire them AND, after all, this is about the education of OUR kids.  It’s one of those comments I still shake my head over. 

A few days later, I was told that the administration wanted my communication with the aide to be done through the teacher only.  Now, bear in mind that I had no reason to bypass the teacher regarding anything.   I can’t imagine a matter that I would want to communicate with one and not the other.   I didn’t have any new information to pass on, it was more a case of wanting to give a second voice to all that I assumed the teacher was saying already so, it seemed extra bizarre that they would tell me “not to communicate with the aide directly.”  The overall effect made me think I had been zapped into Orwell’s 1984 and left me thinking about a college text book I had:  “The Two Worlds of Childhood” regarding Free vs. Soviet societies where children are generally considered wards of the state from birth.  It wasn’t a deal breaker, since I think he is getting good care where he is, but it was definitely eye opening. 

Thankfully, by the time I went to meet the new aide, it had generally blown over enough that no one said anything when I talked to her.  Besides, in all honesty, I didn’t have time to keep debating boundaries and communication methods because I spent most of hell week with our last major contributor: our insurance company.  As I hinted in the comments section on the previous post, we started having trouble with our health insurance.  Everything had started off well.  Bill called the company as soon as we got back from the first trip in November and added Ruslan to our policy.  Then he called again in December when he got back with Will and added him by phone as well.  The company told us that both boys were covered from the date the adoption was “final.”  Of course, Bill was talking to a nameless “guy on the phone”  working in the HR department of his company, so there was some debate about what “final” meant.   Eventually, it was decided that “final” meant from the day we got them in Ukraine, so we felt safe getting started on the boys many medical problems, naively working on a verbal assurance from “the man on the phone.” 

At some point during the call, the company said they were going to send us a form that we had to send back with the boy’s “finalization” papers.  This was all well and good, but the form-filling-out fell to me, and since this is our third and fourth adoption, I thought that “finalization” meant “finalization.”  In America, when you adopt a child, you actually adopt them twice.  Once in the child’s home country and then you re-adopt them here.  So, now that we are back in the states, we have another three homestudy meetings with a social worker, then we file some papers at our county court, then the court talks to the social worker and eventually, we get a paper that says, “Final Order” on the top and THAT paper means the adoption is “final.”   So, we didn’t have our “finalization” papers yet.  From Ukraine, we had a court order, two sets of birth certificates (one with the child’s biological parents listed, one with us listed as the parents) and the boys Ukrainian passports. 

In December, just before Christmas, I got the paper we were supposed to fill out for the insurance.  I actually called the company myself to find out what papers to send them and the HR person finally said to send a copy of the boys Ukrainian birth certificates with us listed as the parents.   So, I actually faxed these papers since somewhere on the paper was the notice that we had to send back the form within 60 days of the date of adoption.  It had been over 60 days since Ruslan’s court date in Ukraine, but not since his finalization (which won’t happen for another few months).

Sadly, it was now coming out that not only had I sent the form back too late, I also sent the wrong papers (they didn’t want the birth certificate, nor the American finalization papers, they wanted the Ukrainian court order), and beyond that, they had no record at all of the phone call Bill made adding in Will.  So, if all goes well for the insurance company, all the medical care that we have gotten for Ruslan and Will so far will not be covered.  This is huge, since we had gotten a lot of care for both of them.  I’d say in the end, it will be at least $3,000 worth.  One physical therapy appointment alone was $250, then there was three or four doctor’s visits, the orthodist to get AFO’s, the AFOs’ themselves and two dentists visits for Ruslan, then another three or four doctor visits and an eye appointment for Will.   Sadly, it was just yesterday that we (hopefully) got our insurance company the papers that they wanted (the Ukrainian court order) and now we are waiting for some sort of confirmation of coverage.   So, we are still fighting it out with them, since I think this is partly their fault (I didn’t even GET the form until after the 60 days were up, their representative told me to send the wrong documents and they didn’t update their records about Will with our initial phone call) but only time will tell.  

Comfortable in my ignorance, I took Will to see a pediatric ophthalmologist on Thursday morning.  I paid for this visit out of pocket, since the doctor was not in our insurance network, so that will be one bill that will not surprise us.  Will has strabismus (not cross eyed though, in his case, the unfocusing eye shoots outward) and so we will have one more visit to take some more measurements and after that he will need surgery.   Please pray with us that our insurance mess will be resolved by then!

Friday morning of Hell Week things took a turn for the better.  I took Will to our counties special needs preschool.   They needed to do an evaluation to see if he qualified for services.  I was a little anxious about the meeting, since I have a Ukrainian friend who came to translate.  I knew that she would be able to give me a better idea of Will’s language ability and general intelligence.  In the end, it was probably better than I expected but worse than I hoped.  As I wrote before, Will would chant one or two words over and over—“car, car, green car” which hasn’t exactly been encouraging.  On the bright side, once he realized that my friend was speaking to him in Ukrainian, he started talking to her and using other words, new words that I didn’t recognize.  So, it was nice to know that he knew more words than colors, cars and animals.  He was also able to do simple tasks for her like, “hand me the circle” or “give me the red peg” that we couldn’t get him to do asking in our broken Ukrainian.  On the down side, she said he was mostly talking “baby talk,” and that he still had a very limited vocabulary.   He really didn’t get past the most basic level of testing, so (if you can follow my twisted logic), the better turn was that he qualified for the special needs preschool here and they had an opening.

We got through the weekend in much the same way that we got through the week with Will demanding most of our time while either Bill or I tried to catch up on neglected work/housework and phone calls while the other went more or less one-on-one with Will.  On Monday about 10 am, I took Will to preschool.  I stayed nearby on the first day, just in case he wasn’t feeling comfortable, but he did fine.  Tuesday, Will and Ruslan both had doctor appointments.  But the next day, Wednesday, January 12^th, Will spent the whole day at preschool.  The bus picked him up at 8am and returned him home about 1pm.  As soon as Will got on the bus, I headed straight upstairs for  a shower.  For the first time since Will arrived in December, I had time to shave my legs, which was sort of an event for me.