Wednesday, February 23, 2011

Working on Walking, Waiting on the Walker

So, the last time I wrote about Ruslan was three weeks ago.   He’s made a huge amount of progress since then.  I thought I would write about how he is doing physically since so many of these posts have been about his emotional development.  Of course, the problems are that it all comes in teeny tiny baby steps and that he is SO behind, even the rare huge jumps only serve to illustrate how far we have to go.  Another factor is that each step is an enormous amount of work. 

The best way to illustrate this is to tell the story of the (still non-existent) walker.   I have to back up a little and explain that we did, finally, get the boys added to our insurance policy.  I got that resolved Friday, February 18, after we had Ruslan home for two months.  I won’t bore you with the details, but I will say it took massive coordination (between us, my husband’s employer, the company they outsource all their PR through, and the actual insurance company), plus several hours on the phone, three faxes, one heated exchange, and about half a bottle of Extra Strength Advil (500 mg tablets.  I love those things).

In between the calling, faxing and my shriek filled home life, I was working on getting a walker for Ruslan.  I started off in late November calling a PT (physical therapist), hoping to start therapy right away.  However, ALL the children’s doctors/therapists here work out of the Kluge Children’s Rehabilitation Center (KCRC), which is part of a huge healthcare network managed by the University of Virginia.  Everything happens according to a set script and there shall be no variation from the screenplay.  Therefore, no one would touch Ruslan until I had gotten him into our “primary care physician” and gotten a prescription for physical therapy.  It took three weeks to get an appointment with our physician.  After that, it was another week until I got in to see the physical therapist.  She did an evaluation and we looked at walkers that same day.  She decided that Ruslan needed one that trails behind him and after trying out several models, she said she would “write something up and get the process started.”   I had no idea what this meant, but I was stupid enough to expect a walker in about two weeks. 

Well, the process goes like this:  The PT writes up a recommendation and sends it to a KCRC office.  They hold onto the paper for a few weeks and then they send it to my primary care physician.  He approves the recommendation and sends it back to KCRC.  They hold onto my paper for several more weeks and then send it to a local dealer who sells medical supplies.  The dealer sends this recommendation to my insurance company, who will hold onto my paper for at least a month and then notify the dealer how much of the cost of the walker is they will cover.  The dealer calls me asking if we can make up the difference.  Then and only then, the walker is actually ordered. 

NO ONE told me about this process.  I’ve just pieced it together over the last ELEVEN weeks as I’ve been tracking that piece of paper every step of the way.  Where is it now?  At the insurance company.  They plan to keep it until the last day in February (I’m not making this up), when they will notify the dealer about how much of the cost they will cover.  

In an effort to speed things up, I asked the medical supplier if I could just pay for our walker with cash.  Sadly, the walker the PT ordered costs well over $2,000.   

My next idea was to take my son and my credit card to a different medical supply store and ask if I could just buy a pediatric walker outright.  The man behind the counter was very nice.  We looked at a catalog.  We measured my child.  I chose a model and placed the order.  It is a plain vanilla walker, pull behind, just like the one we tried out at KCRC.  It was $225, with an extra $50 for a hip stabilizer (a little belt to hold his hips in place).   It still isn’t in yet.  I’ve been calling the man behind the counter every week now, but he is never there and neither is the walker.  His assistant always answers the phone and faithfully takes my message, but so far, no one has called back and no one has my walker.  And, so we wait.

In the meantime, I’m happy to report, I did start Ruslan with a physical therapist a few weeks ago.  The therapists at KCRC are $250 per hour, 20 miles away, and not in my insurance companies network.  But, luckily, there is a physical therapists office about three miles from my house, in our network and right near Ruslan’s school.   I really like his therapist.  He’s not a pediatric therapist, so I’m getting a little flack from the purists, but so far he has been great about giving us stuff to do at home and keeping our visits to a minimum. 

Over Christmas, I started stretching Ruslan every morning between 8 and 8:30am.  He is really tight and it takes about 15 minutes just to get him relaxed enough to really stretch him out.  We start off with his legs.  First butterfly sitting for a few minutes, then we put his legs out in front of him and he touches his toes (just achieved contact this week).  Then we put  his legs in a “V” as wide as he will go.  He starts off at about a 35 degree angle, but after a few minutes, I can usually get his legs apart to about 90 degrees.  Then I stretch his arms.  He has a really hard time getting them above shoulder height.  We also have him reach for his breakfast, crossing his midline and grabbing cheerios or banana pieces etc. over his head.   Then we stretch him over a ball on his back and tummy and do three exercises.

The first is to lay him on his back with his feet on the ball.  He raises up his hips and I have the other kids crawl under the “bridge” that he makes by holding himself up.  We do this until he is tired.  Then we have him lay on top of the ball on his tummy and he stretches out, holding his legs up and his arms straight ahead like superman.  He gets a good snack during this one as well, since we clued in that he holds himself up the best when he is reaching for stuff.  So, we put the rest of his breakfast on a bench and let him reach for things one by one. 

The last exercise is “sit to stand.”  For this, he sits on a bench and stands up (with support) for about five seconds and then goes back down.  The first few times we did this, he was totally relying on his upper body strength to pull himself up.  In fact, he actually said, “tired” once and when I asked him, “where tired” he pointed to his shoulders and arms! (UGH!).   After that, I changed how I was assisting him.  I was letting him hold my hands, but now I have him “kiss his knees” and hold his hands forward (as much as possible) and I hold his hips.  We started off doing this about five times, but now he can do it about fifteen times before he is really tired. 

A few days ago, he stood on his own for about three seconds.  He was just thrilled.  All the family came in and counted to three over and over again while he demonstrated his standing ability.  Now that he is stronger, the therapist recommended that we try to get him to do as much as possible standing up.  I have a few tall-ish tables and he has been great about playing, coloring and eating standing up.  I’m not sure how evenly he distributes his weight, so I think one leg is still taking the brunt of the work, but his legs are so emaciated, I guess we can’t go wrong at this point. 

So, that is where we are.  After about three months here, he can now stand on his own for three seconds.  Considering where he was when he came here, with NO muscle tone below his chest and not using his legs at all, it's actually a huge amount of progress.  He can also reach over his head much more smoothly and with MUCH more control than he could when we first got him.  His arms are starting to look more natural (either that, or I'm getting used to them), and he's holding his torso up better (he used to hunch way over whenever he was sitting).  I keep noticing little things like that.  They're not huge, like the standing for three seconds, but they still are progress and steps that he needs to complete in order to achieve his maximum potential.  Who knew there were so many steps involved?

Wednesday, February 16, 2011


Vitals:  The boys are coming along slowly (slowly, SLOWLY) but surely.  We've hit a few noteworthy bumps, but the kids have been sick and it will take too long to write it all out.  SO, I have been working on this "Why-we-are-putting-ourselves-and-our-children-through-this" blog post for a few months. 

Today seems like a good day to post it. 

This is a list of photos with text that basically describes life in the orphanages where my boys were.  It’s actually worse in many cases.  I’ve probably written before about the boy that first stole-my-sleep because he was tied to his bed 24 hours a day, 7 days a week, basically kept naked on a vinyl mattress so they could wipe up after him.  Another family adopted him (Thank You God) but there is another one, Colton, who I fret over often.  You can see him here:  Scroll down and check out the photos on the left hand side.   Colton is third or fourth up from the bottom. 

The problem with those links however, is that they only tell part of the story.  The first link especially might be called a guilt inducing, “how can you just go about your happy lives when these children are suffering?” sort of post.  If you adopt with only that reason in mind, you are just going to make yourself and everyone else around you miserable. There are other, better reasons to adopt.

So, Reason Number Two:  Handicapped Parking Sticker.  Totally awesome.

Reason Number Three is that we have added two charming “outliers” to the suburban American game of “Let’s Compare.”  There’s nothing wrong with being proud of one’s children, but I think that many times it gets taken too far around here, people casually dropping the fact that their kids are on the “travel” soccer team, in the gifted program at school, the lead in the school play, etc. etc. If I hear things like that too often, I can feel myself getting caught in the trap of wanting to justify my child’s existence according to their accomplishments.  The truth is that my children are valuable because they bear God’s image.  That’s it.  ‘nuff said.  I used to have a mantra:  “I’m not raising superheroes, I’m raising good moms and dads.”  I haven’t had to remind myself of that lately since, when I have Ruslan and Will with me, I don’t hear as many stories about overtly-successful children from the people I meet. 

Reason Number Four is that the boys are having the same effect on our older children.  Instead of comparing themselves to the kids around them, they have a live-in reminder to be thankful for the things they can do and the life they have had so far. 

Reason Number Five:  My older kids also have to think outside themselves on a regular basis now.  Before we got them, we were basically an average middle class family with reasonably intelligent, reasonably healthy children.  The truth is, it just doesn’t take THAT much time to clean the house and do laundry, and we really don’t need the kids to contribute to our grocery bill.  Therefore, nearly all their time was spent on themselves; making us a family of “My/Me;”  my sports, my school, my books, my playstation, my computer, my happiness.  It’s not a terrible way to live.  I, myself, have lived that way nearly all my life.  However, it’s hardly ideal.  If no one around you is legitimately needy (the case in 99% of American cities)¸ there’s really no reason to get in the habit of putting others first.

Well, since we adopted these boys, everyone HAS to pitch in.  I can no longer keep up with everything on my own.  I have to put the extra effort into making my children contribute.  If I slip and don't make them contribute, there's no clean laundry and there's cat hair everywhere, which seems to annoy them.  It’s Donate or Die around here and that’s the way I like it.  

Reason Number Six: everything has slowed WAY down.  There's just no walking quickly to or from the car/bus stop/grocery store with two handicapped children in tow. 

Reason Number Seven  is what this is doing for me. I taught in a special needs pre-school for a while and one of the best lessons I gleaned from my year there was that I LOVE the parents of special needs kids!!  Every last one of them were gracious, patient, loving people without pretense or prejudice and with proper priorities. 

The pastor in a church we attended for years had an office full of books and Bibles from floor to ceiling and yet he was among the least loving people I have ever met.  I can’t remember one time that he wasn't scowling at me.  He never stopped to chat, never asked about me or my family, never even smiled our way.   So much for book learning!  I don’t want to be like him when I grow up. 

I remember another time, meeting a missionary who had spent her life taking the gospel to people in the Soviet Union.  Let me tell you, she was a grouch!  I went away from our meeting thinking, “If this is the result of fervent ministry, I’d rather be a heathen!”   I don't want to be like her when I grow up.

When I lived in Mississippi, I went with a friend of mine to meet a prominent political leader and the first thing she said to my friend was something critical.  Despite her noteworthy achievements, I don't want to be like her either.  

All that is NOT to say that gracious Christians are non-existent, but rather, “Regardless of nationality, social standing, or religion, there are undesirables all around--except where the parents of special needs kids are concerned.”  After a few months teaching in that special needs pre-school, I remember thinking, “when I grow up, I want to be just like these parents.” 

For most of my life as a parent, I’ve really been TRYING to be like them, mostly by purposefully keeping my priorities in order.  If my family comes first then the house is not always clean.  The kids do not always get their homework done.  I might not always get a shower.  The car is DEFINITELY not clean.  We will sometimes have Cheerios for dinner.  

I've been OK with this because the pro's outweigh the cons.  We can always have all the neighbor kids over anytime because, since the house was never spotless in the first place, there's nothing to ruin.  The dishes are all plastic, the toys are already out, one more fingerprint will not make any difference when the windows are just about opaque anyway.  

Those things have always been true about us.  I’m just not a Type-A personality.  But, with only a few, healthy kids, there’s no way to get around the unspoken question of whether things are a mess because 1. I'm stupid,  2. I'm lazy or  3. I have my priorities in order and my house falls well below my God, my husband and my kids.  If I was well and truly humble, I wouldn't care about the answer to the unspoken question.  But, apparently, I'm not that humble!  We all know that all three reasons are entirely possible.  Therefore, there's a certain amount of defensiveness that goes along with my lifestyle choices.

I've been realizing the past few months that now that we have the boys, I’m more relaxed about it.  I thought it was that the parents just HAD to get their priorities straight, but now I think that it's societies reaction to them that makes it all possible.  I now have a built in excuse.  No one really expects me to have everything together, because I have these special needs kids.  See?  No one's asking the unspoken question because in the eyes of society, I don’t have to measure up.  I’m excused.   It takes some pressure off. 

Either that, or I'm just getting used to the idea that I'll never be cool, so the answers don't really matter.  With Will hanging on my hip, there's just no way to appear with-it.  He’s kind of goofy.  It’s one thing to take him to home group or church where everyone in the room knows we adopted him.  It’s another thing to take him to a store where everyone thinks I am the one who produced a funny looking, babbling, shrieking, drooling, not-entirely-with-it, cross-eyed, limping child.  

The first time I took Will to Wal-mart, I saw a man look at Will, then look at me, then look at Will again, then look at me again.  I’m ashamed to say that my first impulse was to say, “he’s adopted.”  Canyoubelieveit?   NOT COOL!  So, I picked Will up, kissed him on the cheek and then smiled at the question-looking man until he went away. 

I don’t consider myself to have failed that test entirely, but it was sort of a shocker and made me understand a second reason why I love the parents of special needs kids so much.  In exchange for a free pass on the house cleaning, you have a funny looking kid on your hip.  That pesky pride problem is finally taken care of!

I know that’s not the most inspiring way to phrase it, but I think to be perfectly truthful, that is what’s happening. 

I’m OK with it...   so far....   really.