Saturday, February 13, 2010

Nik's Deafness-- part III (CI)

Gosh, I originally  thought I could do this post in 1 part.  This is now the 3rd part.  Insane.  Care for the CI.  First off, this is a magnet in his head.  He knows this.  He knows he's not supposed to stick things to his head but does it anyway sometimes to be funny.  Main reason I tell you about the magnet is b/c it can be very, very dangerous.  Especially, if he was ever to get an MRI.  He can NOT get an MRI unless he has surgery first to remove this device.  For that reason, Nik wears is supposed to wear a medical alert tag.  We bought him one from a great company that has a lot of cool stuff.  He doesn't care for it.  Have to find another one at some point. On my list of things to do.  We always, always have it for trips though.  Always.  In case we were ever in an accident and we could not tell people he was deaf, this tag could save his life.  If they do an MRI w/ an implant still there, it can literally rip his skull open.  Again, no biggie if you know ahead of time and make preparations.  Most of the time having special needs children is just making sure you cover everything in case something may happen. 

Another thing you have to be aware of is the static electricity.  It can render the device useless.  Hence, why he has to take it off if he goes on the playground or on our trampoline.  Static electricity.  As long as you know the little rules, it's not a problem.  We have to remember if we are going to be out later than 7pm, we take a spare battery w/ us as they don't last all day.  Nik is good and reminds us when he doesn't need it.  Well, not need the implant so much but knows when it can get ruined.  Nik knew that during all the snow, he didn't want to wear the implant b/c he was afraid to lose it when sledding.  He also told me(in sign of course) that the implant would get hurt if they threw a snowball at it.  Yes, he told me that.  He obviously can't go swimming in it.  Though my husband has already got a design in his head that would elminate the water issue.  Crazy, huh?  So, when we go somewhere where he can't wear the implant, we make sure he is always looking at us.  Trying to do that all the time but even more so when he doesnt' have it on. 

Safety is something else you need to be aware of when your child is deaf.  An incident happened just two weeks ago during our snowstorm.  All the big kids(teens--14, 14 & 17, along w/ their friends) were with him so I did not think it would be a problem.  Seriously thought my children could handle things.  I decided to go join the sledding fun after I had cleaned up the kitchen.  I walk up the drive way onto the street and at that point thought I was going to witness my own child being run over.  Not kidding.  Remember, it was icy, not like brakes are going to work that well.  There was no way I could run fast enough to push him out of the way.  Too far away.  (BTW, NO cars were supposed to be on the road...stupid people joy riding).  So, I scream as load as I can knowing full well Nik can't hear me but hoping some of the other kids would.  I actually think the car heard me as it was able to stop in time.  Almost everyone in the neighborhood knows he's deaf.  This car was honking the horn like crazy but Nik did not even flinch.  Did not blink, did not turn around.  When he finally turns around & sees the car, he was scared and rightfully so.  Here's a place that I'm talking about:

 

Horrible picutre I know but this is just so you all can see what I'm referring to.  This is me(the one starting to take off the brown coat) w/ Alyona spinning on the ground and a neighbor in the red.  This is our street.  Notice the white stuff?  Not just packed snow but slick layer of ice underneath.  Further up where that car is on the left, is a road to the right.  That is where the big hill is they sled down. They know they're supposed to have a lookout.  No one was looking out for cars...no one.  URGHH.  Nik was standing a little further where I am in this picture when I noticed him from my driveway(not in the picture here).  I was devastated. Heart racing.  I got him and went to the hill & screamed & I mean screamed for all the Boyd Kids to come here immediately.  Then, I laid into them AND to all the teens standing around who knew better.  This could have been anyone, not just Nik.  Biggest difference is, they would have heard the car coming.  Nik just went about his business not knowing it could have been a fatal mistake.  I had my teens and all the other teens that day offering to watch him, clean the house, etc.  They knew I was distraught.  Just was ashamed of my kids for doing that.  They knew better.  They know anytime they don't want to watch out for Nik, all they have to do is get me.  They have an "out."  They made a bad choice.  Period.  Long story short, you have to be careful b/c obviously, deaf children can not hear what you are saying.  They are more visual.  That is why we need to buy one of those light up smoke alarms.  Haven't yet, but will soon.  We also have someone "assigned" to Nik anytime we go out anywhere.  A safety precaution. 
I let all my kids be as independent as they can.  I do not feel pity b/c he is deaf. Sorry, but I don't.  He's my son who happens to be deaf.  It is not a "flaw" or a horrible thing that has happened to him.  It is just who Nik is and frankly, I like Nik the way he is.  Okay, so I wasn't saying that about 10 minutes ago when I was yelling at him for something here.  Or when Warren was yelling at him for flooding the bathroom w/ bubblebath this evening.  No, not real fond of him those times but the rest of the time...absolutely!  

One thing I can not stand, is when people get real close to his face and speak slow and LOUD to him.  Many seem to think Deaf people are mentally challenged as well.  Umm, no.  Not many.  They just can't hear.  Yes, they are slow at language & grammar for obvious reasons.  I really just hate it when people say "oh, poor kid."  FAR FROM IT!!!  He has a home, a great life, friends and family that love him.  How is that poor kid??  I'd really like to know.  I don't want my son ever thinking we feel sorry for him and that is why we took him or care for him.  We love him is why we adopted him.  Nothing more, nothing less.  To the point.  I hate it when people pity some of my kids.  I see them as "normal" children.  I really do.  Yes, they have challenges but doesn't every single person in this world face challenges in their life?  We all have I'm sure.  One of Nik's challenges is he is deaf.  Well, that challenge and how not to tick off his sisters.  LOL. 

Back to care for the implant.  He takes it off every night when going to bed.  We have to dry it out as well in a case.  We get it "tweeked" about every six months now.  We are going again this month on the 25th.  Gosh, so much more to say about how he is leanring.  Really, there is just one more part to Nik's deafness post.  It will be totally about how he has leanred to hear and what he hears and what his prognosis is.  Just have to share a quick tidbit w/ you all before I sign off on this one.  Today at basketball, Nik was messing around.  Grabbed him & looked him in the face and said BEHAVE!  No sign, nothing.  Just said the word.  I had planned on yelling at him further but instead was thrown for a loop.  He looked me in the face, pointed his finger to me and said(in a voice) BEHAVE. It was clear as day & others heard it.  We started high fiving and then I told him he could talk.  Told him in sign I was proud of him for talking & using his voice.  It was so exciting to witness. Much, much more to come about him learning and newbie parents learning ASL.  For two years we thought we were signing breakfast.  His interpreter this year told us it was beer.  So, for 2 years we've been asking our son if he's finished his beer. Nice, huh?  But, you laugh and move forward b/c that his what you have to do.  If you concentrate on all the mistakes you make while learning sign, you will never learn.  Mistakes will happen but correct them and move on.  Hey, at least I  was preparing him for his college years, right?  More to come about his language for sure.  Part IV forthcoming.  My thoughts were just long-winded lately.  Have a great night.  So, so much happening tomorrow.

Another day, another dollar...NOT!!!

Been at basketball all day & foregoing the bonfire party that we REALLY, REALLY wanted to go to tonight.  Honestly, we're beat & afraid we'll get stuck in the mud.  Hoping to reschedule w/ Mary and her family for another night.  We let the kids stay up very late last night and everyone is just tired.  I'll make this quick b/c I want to post the last of Nik's Deafness Post.  Pictures forthcoming for tomorrow's post. 

Alright, here goes.  Trying to keep my tongue from bleeding so much from biting it so dog gone hard right now!  URGHH.  We filed our taxes just like every other American in this country(well...most of them anyhow).  Did it early.  Not so much b/c we wanted the refund but more so b/c we know the State of North Carolina is somewhat broke.  They delayed refunds last year though we missed that delay...barely.  So, did the taxes right away.  Got the federal return back...hooray.  Got a letter from the state today.  If I could spit fire I would.  It is NOT b/c the refund will be late.  I already knew that going in.  This is b/c we have to PROVE that our children belong to US.  They are ONLY doing this with big families as far as I'm aware.  Been told it is for people w/ 5 or more kids.  I guess there are people that lie.  But shoot, have one of their representatives come over to babysit and I can assure you they will say we are definitely not lying and that these children literally do exist in this house!  Here is the list of documents that we have to provide for every single child:

A copy of our federal income tax return.

Statement indicating the physical address of all dependents claimed on your tax return.

Statement indicating your relationship to dependents claimed on your tax return.

Birth certs of all dependents.

Copy of SS card for us and ALL dependents claimed on our tax return.

Now, I know this doesn't seem like a big deal to most but there are 7 of them w/ foreign birth certs.  We never re-adopted them here in the state of NC.  You are NOT legally required to do so.  Have never had a problem w/ anything in regards to re-adoption.  I have a feeling though, NC may give us a hard time about the foreign birth cert if it is for the purpose of paying out a tax refund--LOL.  Another problem may be that IRina and Max's social security card needs to be changed out.  It says valid for work only as if they are US aliens.  That is NOT the case but is a "process" to make correct.  We are going to be working on that process obviously.  In fact, part of the money from said refund is going for this this year.  URGHH.  I don't know what is going to happen but not having a fuzzy feeling that this will actually work the way it is suppose to.  We aren't lying.  There are 7 children here, all special needs, all dependent upon us as providers.  That is fact plain and simple.  Sould interesting for sure to see how this all plays out.  Hold on, we're in for a roller coaster ride!  Now you all see how adoption is part of your life forever, not just in court.  IRina and Max have been home over 10 years now.  And they are still questioning whether we have these children?!  Geez.  Wish us luck.  Write more later.  Tomorrow, some new pictures.  Some suprises...stay tuned for more.

Friday, February 12, 2010

Quick updates & miscellaneous

I do know that I have to finish Nik's posts and will do that soon.  Was going to just update a couple things of why I hadn't been posting as much.  Well, I now have a part time job babysitting 2 toddlers, ages 2 & 3.  Cute little things though don't think they sit down for even 2 minutes.  They keep me on my toes.  But, it's fun and I am getting a workout for sure!  Frankly, I'm hating the fact that we have a swingset right now.  LOL.  They do love it.  So, no time during the day to post on the computer that's for sure. 

Everyone has remained healthy thus far.  Hoping it can stay that way for the rest of the winter season.  That would be awesome.  Irina has decided she wants to try out for swim team at the new school next year so looking into that.  Max is still working on art stuff.  He is going tomorrow or Sunday to finish his mural.  We'll be sure to take lots of pictures of it.  Yana is trying out for soccer on Monday.  I have mixed feelings about this as not sure what her true motivation is here.  But, as with anything the kids do, we will support it if they desire to do it.  This just came out of left field though so kind of wondering.  Somehow, we have to get a physical done for her before Monday and we'll be gone all day Saturday.  Bojan is doing really well in school.  He's doing basketball as well as Alex, Alyona and Nik. 

We've had many projects we've been working on lately for the kids.  Warren and I are trying to figure out what is best for the house.  Many, many repairs are needed here.  I am also working on figuring out what all our plans are over the next few months.  We have basketball season till at least the end of March.  We try to let the kids go places or experience thing throughout the year.  So, for February, we are going ot a big bonfire party tomorrow and out to dinner later this month(gift cards leftover from Christmas).  For March, we are planning to go to 2 or 3 different museums.  April-- we'll do a camping trip and some hiking.  May, we are goin to the deaf camp in the mountains and zoo.  June, it is a trip to D.C. for an adoption reunion.  July, Warren and I have his high school reunion and some day trips to the beach for the kids.  I'm sure there is more I forgot.  Throw in there hopefully a trip to Bulgaria and we'll be good!  Many places we can get discounts for from Warren's work.  Many free museums here too.  Warren's high school is not far so no expense there.  Beach is only an hour and 20 minutes from house so not expensive.  Many seem to think if you have a big family, you can't go anywhere or do anything with the kids and I'm here to tell you that's not true.  Agagin, bargin shopper here.  LOL.  Anyhow, lots going on.  So, if any of you are in the Washington D.C. northern VA area and want to meet up, let us know.  We're trying to plan ahead. 

Right now, it is really, really snowing outside.  Most likely, bsaketball will be cancelled tomorrow but we're still on a wait and see.  I must say, it is really gorgeous outside.  Kids and us went to Walmart tonight and got Nik his new glasses.  Max said Nik now looks like a nerd.  Brothers.  Warren picked up some movies for the kids.  FYI, it looks as though Walmart is liquidating their entire dvd stock.  Meaning most likely, all will convert over to blueray discs.  You know, the more expensive ones.  URGHH.  Anyhow, thought I'd pass on the deal.  Many movies are just $5 and $4.  Many, many movies now.  Not just their little $5 rack they usually have. 

Adoption front is at a standstill basically.  Awaiting passports and FBI checks to come back.  Should be soon.  Next week, I'll receive that wonderful dossier packet that is actually larger than our national debt to fill out--LOL.  Those packets are unreal.  I will take pictures of the piles once they are done.  Fundraising is our main thing now.  Fill you in tomorrow. 

That is about it for now.  Much more to say and show you all tomorrow.  Stay warm everyone.  Thanks so much for all the kind things said on Nik's Deafness posts.  Will do the final one tomorrow for sure.  After I'm done with Nik's deafness posts, I think I'll do Bojan and his limb difference.  Life w/ prosthetics and such.  More pictures forthcoming for sure.  I'm actually going to sit down and read the manual for the camera and check out a book on taking digital pictures.  I really want to capture my kids at their best... and worst and not have grainy or blurry images.  It will take time but worth it if I can actually learn basic photography.  If anyone has a great recommendation for beginners, please let me know.  Thanks so much. 

Wednesday, February 10, 2010

Nik's Deafness-- part II (CI)

I think I left off after Nik had just had his CI surgery.  I decision hard for any parent.  Especially, us at the time.  What most of you don't know, is that just a few months earlier & a month earlier, our daughter had gone through  a horrible botched surgery job on her arm to fix radial articulation.  She still has permanent damage from it.  So for docs to think we were taking the CI surgery lightly, really ticked me off.  We do an average of 5 to 6 surgeries in our home every year.  I think by now I know the risks of any surgery.  And the CI surgery is risky.  We already know it destroys whatever residual hearing he had.  A risk that you have to consider when doing this surgery.  After surgery came healing. 


This was Nik the day after surgery I think.  It is still really swollen.  His one eye even swelled shut.  But, doesn't take too long for the swelling to go down.  What was hard for Nik to understand was we told him he was getting this surgery so that he could hear.  Never thought to explain to him that his hearing would be gone for a month before he'd hear a thing.  Again, did what we knew how to do.  The surgery really wasn't that bad for him and it was pretty routine now.  He was up and about the next day. 

After healing, we then go to what is called activation day.  The day they turn the device on.  We had 3 implant companies to choose from.  we told them we only cared about durability mostly as most at the time performed the same way.  As I've said before, with FASers in the house, you have things broken all the time.(today, it was my favorite glass)  We wanted to be prepared for anything.  Sure enough, we were right.  More about that later.  Activation day is exciting.  Remember, there is no guarantee the implant will take.  There are some failures.  But in my gut, I knew itwould take.  Here's a scene:

 

This was when we just found out it worked!  Can  you tell I'm a bit excited?  Irina is smiling in the background too and so is Nik.  It was just this overwhelming feeling of relief.  This was his first implant.  He's lost a few in the woods.  This surgery was roughly near $60,000 USD.  Our insurance covered 100%.  We LOVE our healthcare.  I know the media is bashing our healthcare system right now but I have to give praise where praise is due.  We pay our insurance each month and big surgeries like this and Bojan's prosthetic leg are covered 100%.  I just wanted to say I'm grateful for the healthcare our family is able to have.  Let me see if I have a better picture of the implant:

  

This is a more recent shot of his implant.  Kids dont' think twice about it as most kids nowadays have ipods or cell phone pieces or what have you coming out of their head.  The top part is the magnet that sticks to his head.  And yes, Nik sometimes will stick refridgerator magnets on there now that he knows it's a magnet...urghh.  The string like thing that attaches to it is called the coil.  The coil hooks to the processor.  The bottom part is the battery.  The top part that hooks over his ear is where the microphone is.  This device has three settings that can be programmed separately.  When they first put an implant in, they have to gradually get them used to all the new sounds.  This process takes months to tweek it out.  
And the real fun begins.   He did not want to wear this thing.  I kept hearing "force him to wear it", " make him wear it from morning till night," and so on.  I refused to do so.  Why?  Because every time he didn't want to wear it, he'd throw it in the woods.  Keep in mind, we're surrounded by woods, a creek and numerous kinds of creatures back there.  Get this, we drained the ENTIRE pool b/c Alex said Nik threw it in there.  It was green at the time b/c it wasn't opened yet for swimming.  We don't treat it until it is time to open it.  So, drain the pool and Alex says " well, I thought he threw it in there."  URGHH.  We had countless incidents like this.  It has been buried and found.  How?... b/c my boys swept the yard w/ their play metal detector.  Yep, sure did.  I started paying my kids money to find the stupid implant.  Yet, we were being told we weren't trying enough.  URGHH.  Professionals get to me sometimes.  Long story short, he started to use it more.  

I will explain a few more details about what it is like to care for the implant and what life is like with the implant.  Thought I could do this in two posts but this is way too long and Alyona is fighting me on going to bed.  At first when he got the implant, we thought that's it, he's now going to be deaf AND blind(tell you about the blind part later).  It was SO incredibly disheartening to think the thing we put in his head was not going to help him a bit.  Patience is what we needed to learn.  I'm not good at patience.  God only knows how I survived 7 adoptions as they take immense patience.  Slowly though, I kept changing the way I thought about the implant.  Hoping and praying with time it would work.  Also, Nik and I were slolwly learning more sign and getting closer than ever.   I sent him to school reluctantly.  The day I saw the kids in the library from his class leave him b/c he was reading a book, broke my heart.  I was watching from the window.  They had forgotten him like he did not exist.  They were pointing, not talking to him, just pointing.  This was kindergarten last year.  At that point , I was calling on my own to find an interpreter after being lied to by the school that they couldn't find one.  Offered them my list of ones available and everything.  Nik hated school and I couldn't blame him last year.  I made a promise to him that mommy would make it all better.  I fought and we got an interpreter.  After feeling left out all last year, he now has a full time interpreter in school.  He has friends and they talk to him... in sign!  He comes home and tells me what he did in school that day.  He likes school.  AFter all those months of wondering if I had made the wrong decision and I should have sent him away to the deaf school, I realized sometimes you have to take the broken road to get to the smooth highway.  Nik is now a well adusted 7 yo boy.  He's going to a birthday party for one of his classmates next week.  Does she care he's deaf?  No.  He is her friend.  

I will continue this post. Sorry so long.  Next part will be about the care of the CI and his progress and what he can hear.  Yes, I said H-E-A-R.  His deafness will always be a part of who he is for sure, but it will never limit him nor define him.  I've learned so much from this kid and clearly see why he was placed in our path.  I don't question God as much as I used to in regards to Nik.  I know that sounds mean, but in the beginning we were faced w/ such adversity and hardships regarding Nik.  Going from thinking he's just has selective mutism to Usher' Syndrome all within a two month time period, was a little tough to take.  I will say this though, my perception of the deaf-blind totally changed.  I met some awesome , awesome people with Ushers Syndrome so far.  When Ashley came to my house w/ Ushers and showed me her family picture and found out all she did, I knew from that moment, Nik would be okay.  I no longer thought of the deaf-blind as not being able to live a normal life.  That is SO NOT true and such a misconception.  I almost feel embarassed admitting that I once felt that way.  I did remember, the lady that came from the deaf school.  She had taught at the ENCSD for over 30 years.  Great lady  Came to our home on her time.  She told me she thought Nik was very gifted.  She said he acts like the deaf-blind kids she's taught.  She also told me I'd have to fight harder than I'd ever fought to get Nik the help he is supposed to have.  She said I should never stop fighting b/c he's going to be someone someday.  I truly believe that.  This kid that was going to be destined to be tied to a bed in a mental institution all day b/c he couldn't speak & was deaf, was now going to be someone great.  I'll let you know what great thing he does in the future.  Right now, my son is in the bed screaming Alex's name b/c he's tickling him.  Will finish this tomorrow.  Sorry so scattered. 

Catching up

Ah, a day w/ NO appointments or meetings.  This is great.  FYI, we have finished two Valentine's Day mailboxes, 1 chocolate bar graph, 100 days of school project, 1 set of Valentine's day cards and started on 4 other projects this past weekend.  Phew.  What will homework be like when all 10 are home?  Yikes!  But, we've managed all these years, I'm sure we'll manage the next few years when the others are home.  Plus, Little Bit will be home with me for a few years before entering school.  Here's a few pics from the past weekend:

 

This was Nik's 100 days of school project.  We were going to spell something out but the gum & glue were just not cooperative.  So, we just pasted a hundred pieces of gum on there and called it a day.  It was all the kids could do not to eat all the gum.   I love Chicklets Gum.  Reminds me of my younger days.  So much flavor and you were happy w/ just one or two pieces.  Even though the flavor ran out faster than you could blow a bubble.


 

This is Irina trying to decide what to do with the rest of her posterboard.  She was stuck on the fact the teacher told her to be creative.   She has already finished about half of the project.  She is on an occupational track at school where they trained developmentally delayed and disabled students for the work force.  For this project, she had to tell about herself and attributes she has and what she wants to possibly do later in life.  It's turning out great so far and she is doing it all on her own.  I try to get most my kids to do their own projects.  I know a lot of parents help but I go to school and see some designs that actually looked like a professional was hired.  You know for a fact the parent did most of it.  I think the kids learn more if they do the projects.  If they can.  The younger ones I obviously have to help a little more.  


 

The things you'll do for your kids.  Of course, this was not that hard to do.  Warren and I were out doing errands and picking up some bread.  Usually we get around 40 loaves for the month but for some reason they were low.  While there, we picked up various candy for Bojan's project.  Ahh, the tempation.  

 

Bad lighting, I know.  I'm learning with every shot.   Irina' s job(gladly I might add) was to carefully open every package of candy we got so we could then use the labels for the project.  She bagged up all the candy.  I'm sure she got a taste or two in there.  This is the good candy too!  Reeces, Hershey's, Nestle, Hershey Kisses, etc.  I've snuck a few pieces in the teens' lunch boxes this week. They enjoyed it.  I may have tasted them, you know... for safety reasons.  Right?  Well, that's the story I'm sticking too anyways.  

 

This is Bojan working on his chocolate bar graph.  Alyona is making sure he doesn't mess up.  She likes to help and all the kids are really good at helping each other with projects.  And letting each other help as well.  Again, I only made suggestions and Bojan was totally self-sufficient at doing the project himself.  He's awesome & very smart at academics.  It's the common sense things sometimes that I wonder what is going on in that kid's head.  LOL.  But, then I see his friends come over and they do some of the same stupid things.  I was rather impressed Bojan figured this out all himself and really put forth the effort.  He was working on one end of the table and Irina the other end.  Then, Bojan and Nik did their Valentine's Day mailboxes.  I helped a bit on those.  Productive Sunday for sure.  

 

You have your self-motivators in our house and then you have Alex.  Okay, Alex is not on my best list lately.  It seems every single year I have at least one kid that has seemed to have given up in school.  Last year it was Max, year before that it was Bojan and this year it's Alex. URGHH.  This kid is driving me insane b/c he CAN do the work, he just chooses not to do it.  I can not stand laziness.  Ask any of my kids if you ever see them.  What does mom hate?  First thy'll say liars and second they'll say laziness.  Not kidding.  Those are the two things I can not tolerate in this house b/c it is something that you can do about it.  Max and Bojan are excelling academically now and in regular classes.  Alex, is facing failing this year.  I told him he's digging his own grave and only he can get out of it.  Let's get one thing straight too.  Alex IS capable of this work he's given.  He'll simply hide it or lie that he has to do it.  He's been caught several times.  Currently, he's grounded until he can prove to us his grades can go up.  (btw, I know they can have had discussions w/ the teachers).  Alex has several dx's including RAD and FAS.  Warren and I treat all the kids the same including punishments no matter what you have.  I know many don't find our approach what you should do w/ FAS kids but we look at what works in this house.  We know society isn't going to give them a break when they are older.  They need to learn failure as well as success.  This everybody gets an award deal in school drives me nuts.  Have them EARN the rewards.  Don't insult their intelligence.  Alex has learned to play the system.  FAS kids are more than capable of leanring consequences for their behaviors.  Trust me.  Even some of mine w/ very low IQ's.  Sidetracked again.  Sorry about that.  Alex is a good kid, just lazy.  That may sound mean but it is true.  Alex also is intellegent.  Max used to be the same way.  Now, Max is doing things ON HIS OWN.  So, it can be turned around.  We are going to a huge bonfire party this weekend.  It was rescheduled due to snow.  Alex is grounded and has to stay with mom and dad during the bonfire party.  Alex has to learn that he CAN do things.  It's a matter of time I feel.  Otherwise, everyone is doing pretty well.  

Mostly school stuff going on this week.  Had an IEP meeting for Alyona on Monday.  Lots of progress.  Lots!  Was happy to hear that.  Now, if I could just get the teacher to actually give her consequences for stuff, we'd be alright.  TEacher said she's always getting up out of her seat and not finishing the work.  When asked what do you do when she does that I am told redirection.  In other words, this kid isn't really being told to sit down and do her work.  I know it is a special needs classroom, but Alyona can sit down.  At home, she gets out of her seat, she's punished.  This week it was get up from the table & you get 10 minutes of play taken away at the big party.  AFter getting up twice, she got it.  Why can't the schools apply the same principle? My kids understand punishment and rewards.  They do.  They know if they behave, they are allowed to play with friends and that we get to go places.  They also know sometimes we throw in special treats or rewards for doing good.  They know if they misbehave, they can't do that.  I hate it when schools think kids with special needs don't "get" alot of stuff as far as concepts go.  I think many of the teachers would be shocked to see what the children actually can do at home.  I think parents push more b/c they realize their children have far more potentiial than the teachers give them credit for.  This has happened to almost all my children here in the NC Education system.  Saddens me as a parent b/c I feel they feel the kids aren't capable or aren't worth the effort.  I'm here to prove that wrong--LOL.  My kids have different levels of abilities but I'll be dog gone if they're just going to sit around and do nothing as an adult.  They can and will be productive members of society.  My kids have awesome potential and intelligence. 

I'm finishing some more papers today.  Waiting for those stupid passports to come in and the FBI fingerprint checks.  Not much going to get done the next week or so I'm sure as the federal government is shut down due to a blizzard.  Always delays in adoption, always.  We are just going with the flow though.  Hoping I get my dossier kit in the mail soon so I can start on htose few hundred pages.  I really want it in by March but can't do that if I can't start on it b/c I don't have it.  Should come soon.  which brings us to a huge issue which I will discuss tomorrow.  Fundraising and child care while we're away.  Discussions for another day.   

Kids and us are very, very excited about the upcoming bonfire party.  We always have such a good time at the farm.  Oh, found out hte dates of the Orenburg Adoption Reunion... June 25th and June 26th.  It's near Washington D.C.  We are planning on going.  I know we can't stay with family and that's okay.(some of you know the story of why)  We should be able to find plenty of campgrounds and neat places.  On the up side, my brother said he'd try to visit us while we're there.  And the reunion hosts are trying to get a White House Tour on the 25th.  The kids would be SO exicted.  Me too.  I've never been.  Some fun little trips coming up for the kids. That is one thing I've learned in past adoptions.  Life goes on while you wait.  Don't plan around the adoption and do NOT cancel anything.  May and June will be busy for us for sure.  Hoping for other reasons as well but you never want to wish too early.  Will finish Nik's other post soon too.  Just catching up here a bit. 

Tuesday, February 9, 2010

Nik's Deafness-- part I (CI)

If you haven't guessed it by now, this post is going to be about Nik.  Nik is currently our youngest son at 7 years old.  He is in kindergarten and has friends in his class.  He plays with his brothers and sisters.  Fits in perfectly with this family.  Oh yeh, Nik happens to be Deaf.  This may be a long post but feel it is necessary.  Many wonder why we chose to adopt a deaf child.  Umm, we didn't.  He chose us!  We chose to adopt a child who just happen to turn out deaf.  I want this post to be a little about special needs but more about what it means to have a deaf child, how to cope with that  and what we've learned from it.  I guess I'll start from the beginning so be prepared. 

Towards the end of the year when we adopted Bojan, I kept feeling that "tug" again to bring home more children.  I think we've all been there in some form or fashion.  That is when I found Alyona online but she had a hold status by her name.  Didn't clear up until March of '06.  I waited.  I signed on w/ the agency in April & told them I'd have approval for 2 children but wanted the other one to be as young as possible as I still had longed for that baby.  On the sheet of what I would and would not accept as disabilities, I checked off that I could handle anything at all EXCEPT for deafness and blindness.  Oh, the irony of it all!  The reason I did that was b/c we did not know one single bit of sign language and thought we'd be a terrible family for a deaf child since we wouldn't know how to speak to them.  They said, we found a boy that I think would be perfect for you.  Kicker is that he HAS to be out by October or he's getting sent to the mental institution when he turns 4yo.  Here is what they sent me:

 

and this one:

 

The agency wrote me & said I don't know what is wrong w/ him.  I wrote back these exact words:  "I don't care what is wrong with him, he is MY son!"   A few days later they told me he was mute due to trauma.  Researched selective mutism and realized that was a need we could deal with.  Long story short, get to Russia and I turn to my husband and said "I think he's deaf."  No, can't be.  Not our new little boy.  No way he could have gone four years w/out someone noticing this issue.  No, not our boy.  Do you sense a form of denial here folks? 

Got him home and got him settled in.  Or, so we thought.  The constant screaming was almost too much to handle.  We didn't want to admit that to anyone however, as we were "experienced" parents.  Not us, no.  We definitely could handle our own child, right?  LOL.  Again, with every adoption has brought us some great learning experiences.  This was indeed one of them.  I kept asking what was wrong with him from many people.  I had many write me back and say autism.  I kept thinking to myself, I don't think so.  

Finally, testing came.  Thought I'd have some answers at least.  Not more questions.  We went to UNC Chapel Hill, NC for what is supposed to be one of the best audiology departments.  They tried to tell us he had only mild to moderate loss.  Umm, I don't think so and you're testing him wrong.  I told them you KNOW audiology, I KNOW PI kids and how they will test.  They are basically "trained" at the orphanages how to be tested.  That is why when you first get home, they will a lot of times test higher than what they truly are mentally.  One of my children has an IQ of 58.  When first home, they tested in the 90's for IQ.  They are amazing at "reading" what is to come next.  This is what Nik did on the hearing test.  Yes, he's going to look for those stupid animals lighting up in the background b/c he is seeking out the stimulation and newness of it all.  I left w/ a dx of mild to moderate hearing loss yet had a gut feeling something just wasn't right.  There had to be more to it than that.  They told my husband they'd test him w/ an ABR(sedated of course) but were not expecting to find anything at all out of hte ordinary. They said there's this one thing called auditory neuropathy but it is rare really.  Fine.  Long story short, after the ABR, my husband was greeted by one of the audiologists.  She said remember when I told you about that thing called Auditory Neuropathy?  Well, Nik has that.  We went onto have another wave of I don't knows from many professionals.  Most have never heard of that diagnosis.  Basically, it is as though our son has a permanent "snow sounding " channel in his head.  He never hears the same sound twice.  Say "baa" and he could possibly here it as one or two syllables.  Hear it as shh, maa, or baa.  There's no consistency with this disorder whatsoever.  It is a chaotic nerve response.  Very frustrating.  He can hear me call his name one day and the very next day hear nothing whatsoever.  We then went to Duke for a second opinion.  Touted as one of the top notch hospitals in the nation.  But the bedside manner I got htere, I could do without.  Sufice it to say, they were not very nice.  They were not interested in answering many of my questions and told me, he just has a "simple vanilla hearing loss."  Oh, how wrong that woman was!  See, with AN, it can get better or progressively worse.  Since he was older, and not improving, chances are it was going to get worse.  It did by the way.  A child with AN can test fine one day and really deaf the next.  It's nuts the no consistency part.  Imagine having different channels going on in your head all the time.  I'm telling you, I highly adsmire my son.  I swear if I had this happening in my head, I honestly couldn't live with it.  I wish I had the link to an audio.  It shows what AN kids hear.  It is eye opening.  My son is brave just for waking up to this crazy life altering disorder.  I can not phathom having to deal with that every single day.  

While we were doing more research on AN, Nik was fitted with hearing aids.  He kept yanking them out, we had professionals tell us we were lying about his usage!  yes, we sure did.  Nik hated those things and we finally figured out why from other gourps online and older AN kids.  All the hearing aids were doing was amplifying the chaotic sounds that AN kids hear.  Making chaotic noise even louder.  How horrible for a kid.  Trying to adjust to new life in America while having parents fail miserably at what was going on with him.  Well, after much, much research , we discovered AN kids do phenominally well with implants.  We pushed, and pushed and they were VERY reluctant.  Very.  Didn't care.  Nik had moderate loss in the left ear and severe to profound loss on hte right ear all due to auditory neuropathy.  Remember, AN kids can test differently each time.  We knew this was what he needed.  His time was running out too.  We are told that after age 5, the ability to learn language significantly drops.  He was 6 at the time.  We didn't care.  We knew this was best for him.  Hearing aids, he threw away in the woods all the time.  For some reason though, my gut said this will work.  

So, we prepared for surgery.  


 

Once all the CI(cochlear implant) clearances were made, we were headed off to surgery.  This is Nik before pre-op.  no idea what was about to happen or how his life would change forever.  We tried to explain as best we could to him that he would NOT be able to hear after surgery.  That he would be deaf forever in that ear.  This was his first surgery.  He's seen many of his siblings go through surgery but this was a first for him.

 

My camera hog right after surgery.  He tried his best to smile.  That head bandage was supposed to stay on a few days.  No, it didn't make it but a day.  We'd been through enough surgeries in our home though to know how to do wound care.  This is an outpatient procedure.  You are not there long at all.  They cut open right behind his skull and put a magnet in his had.  It's the size of about a quarter.  Amazing technology for sure.

 

This is just to me an angel sleeping.  He just looks so peaceful.  The jacket next to him is mine.  He finds comfort in it for whatever reason.   Nik puts it on whenever he gets the chance.  Recovery was pretty quick.  The real challenge was in months to come.  Mixed bad advice from professionals and uncharted waters for us.  For now, he sleeps innocently.   Not fully understanding why whatever crazy hearing he had in that ear is now gone forever.  Did we do the right thing?  We're we wrong to push?  Will he ever hear?  He had to heal for a month before they were allowed to turn him on.  Called activation day.  More about that & the learning process of a CI.  Another post tomorrow.  

Monday, February 8, 2010

Upwards Basketball Games- continued

I think I left off w/ Alyona's game & covered Nik's game.  I am now moving onto Bojan & Alex, who happen to play against each other that evening. 

 

This is actually during Alyona's game.  I was SO, SO proud of Alex.  He has really developed an understanding lately that his sister is limited in many areas.  He knows she is much slower than him mentally.  Alex was sitting here the whole time rooting & cheering her on.  Yes, he was.  Go Alyona!  You can do it!  Those were some of the things he shouted to her.  He told me later he is going to help her shoot the ball.  Good for him.  Have to sidetrack and tell you this story.  Alyona went to Special Olympics last year.  She had to do the long jump & the softball throw.  Well, Alex said he'd help her practice throwing.  Trust me, Alex is an expert in this area--LOL.  I thought nothing of it really.  It was the Olympics and Alyona's turn.  Knowing her messed up arm & such, the judges were standing maybe 3 feet in front of her as were we.  The whole crowd outside erupted in screaming and cheering as that ball went clear across the field.  The judges had to run down the field to go measure.  I mean, I dont' think I could have thrown it that far.  When our eyes finally popped back into our heads, people started to ask her where do yyou learn to throw like that.  Proudly, Alyona answered " My brother Alex taught me."   That was a moment I don't think I'll ever forget.  So, I do think Alex can teach her to shoot.  We no longer have a basketball goal but maybe I Max can rig something up on the tree.   We'll see.  


 

Here's Bojan & Alex in action.  Can not believe the coaches had them guarding against each other.  Bojan is limited due to his prosthetic and clubfoot. Though it's really the clubfoot that gives him more trouble. However, Bojan has the cleverness to outsmart Alex on some moves.  So, it's kind of an even playing field when you look at it that way.  Bojan did fall quite a bit in the first two quarters.  One time he fell, another kid fell onto and landed w/ Bojan's foot in his head...ouch.  That prosthetic is all metal and that hook of a foot does indeed hurt.  Kid was okay but it wouldn't suprise me if he had aknot on his head from it.  Now, Alex fell, another kid landed on top of him.  Alex ended up smacking his jaw against the floor.  Ice pack for a few minutes and he survived.  Alex is very athletically inclined and extremely active.  We picked basketball for him b/c figured it wasn't as rough as football.  Alex has one kidney (another FAS birth defect) and can not risk injuring it doc said.  We let Alex play anything but football or wrestling.  Alex is okay with that.  Anyhow, Alex has to stop for water frequently when playing as he gets very overheated. He can not regulate his body temp.  That's kind of hard in the summer as we live in NC. 100 degree weather doesn't help him any.  Don't worry, we found a solution.  Alex and Bojan both played amazingly well and I think actually enjoyed a little friendly competition between brothers.  Fun watching them.  

 

I have no idea why my child is bundled up like this watching tv.  He told me he was pretending to be someone else.  I guess he plans on exploring Antartica or something.  Bojan has 2 winter jackets on, a sweatshirt, gloves, a hat and pajamas.  And yes, of course there is stuff all over the floor.  What picture would be complete w/ out dvd's laying out (Warren hates this) and a dog in the background.  I let him wear this.  Trust me, he didn't keep it on for long.  It's cold in our house but not that cold--LOL.  


This is Max helping me out.  We were filling up birdfeeders.  Yes, it's February and he has on shorts and no jacket.  Crazy kids.  I usually am bundled up in a jacket w/ a hood & gloves on.  I'm all for the beach.

 

We try to make sure we feed the birds in winter.  Though I must say, the squirrels end up eating a lot of it.  Still, was nice to come home today and see about 4 birds eating out of this feeder and a pile out of the rest of the feeders.  We have wildlife in our own yard that the kids like to explore.  From birds to squirrels to bugs to rabbits to deer to you name it.  We like that about living here and so do the kids.  We like sitting at our dining room table in the spring and have the hummingbirds come right up to the window to feed.  Just makes the meal.  

That's about all I have for now from some of the weekend of games and school.  I'm writing a post ready for tomrrow about Nik and the implant he has.  Also, maybe some from yesterday and what the kids are working on at school.  Though we are in process of adopting, our other current lives must go on.  Hope I can share some of it with you.  It's normal most of the time. 



Alyona-- an orthodontic visit... not what you think

I will write a post later about Nik I think.  And finish our Upwards Games post as well.  For now though, it is Alyona on the mind.  I can not fix the past of my children.  I can not fix what was done to them by the alcohol consumed by their birthmother during pregnancy.  We live in a country here where we understand the potential risks of what Fetal Alcohol Syndrome can do.  It is the ONLY 100% preventable birth defect.  The only one.  Yet, 6 of my children suffer from this syndrome and many of the birth defects that may come with it.  I wish I could fix it, but I can't.  All I can do as a parent is help them to heal and treat them medically if need be.  Today, that is what we did. 

Warren and I took Alyona to a maxiofacial surgeon to check on her upside down tooth.  It is growing upside down, root & all.  It is actually right under her sinus cavities.  Risk of puncturing that would be high.  Our regular dentist discovered this years ago.  He had consulted w/ many other dentist around the country.  Not just in this area.  Anyhow, we went to the orthodontist and then today to the surgeon.  He took a 3-D x-ray of her mouth & head.  Pretty neat.  Wished I had taken the camera.  alyona was so cute b/c the x-ray vest weighed as much as she did almost!  She kept saying it's heavy.  Was  a real trooper.  This contraption is interesting for sure.  Gave the doc a great view of her tooth.  She wasn't in any pain on this visit at all so that was nice.  This guy is going to consult back w/ our orthodontist & dentist but we all feel there is no way to save the permanent tooth.  We knew that going into this.  She will need surgery & we just need to decide when to do it.  Alyona has begged us not to have surgery again.  Remember, she had a very bad botched surgery job on her arm.  All her issues combined make surgery sometimes a little more risky.  I think this one will be fine.  He said plan on being there 2 hours.  Surgeon already wrote the script for the antibiotics. 

One thing I can't help but think, was this the result of the alcohol?  We'll never know.  I do know our dentist said she was  very close to having a cleft palate.  That can also be a result of FAS believe it or not.  Sometimes, these things just happen in people.  Sometimes though, in the case of FAS, they are the result of negligence.  But the little girl has had just so, so many things happen, I wished she didn't have to go through it at all.  Alyona always seems so much more fragile than any of our other kids in surgery.  Shoot, Bojan is usually trying to walk on the stupid casts the day after surgery.  Nik wasn't too bothered by his implant surgery either.  For Alyona though, I feel for her.  She is one tough cookie.  Just wish she didn't have to be so tough all the time.  Good news is, we can fix this.  So, I'll let you know when her surgery is so you can send good vibes, thoughts and prayers her way. 

Now, I will finish the Saturday post.  Then, move onto yesterday.  I am falling way behind here.  CAtching up this week for sure.  We had many responders on the reverse hosting program and can't wait to hear about the trip.  Please look a couple posts back for more information.  Busy week this week.  I have Alyona's IEP meeting today.  This is for school services.  She is in a special needs class.  She is doing well & this should be a relatively "easy" meeting.  Other special ed parents known exactly what I mean by that.  More to come. 

Sunday, February 7, 2010

Time flies... when you're tired

Oh my, oh my.  This has been one long weekend.  I think I last wrote on here on Friday.  Well, yesterday was Saturday and it felt like one of those Groundhog Days... you know, one of those days that just will never ever end.  Okay, started off without being able to sleep in. Why?  Because the kids all had a make up snow day on Saturday.  They did nothing in school but played and learned nothing while doing it.  Nice, huh?  Total waste of time but Warren and I had things to do and places to go.  So, off to school they went.  Call it mean if you want to but that is what we did.  Warren and I had to be quick though as they had an early release day.  We decided to go to TJMaxx first.  For those that don't know, it is a type of discount store.  They get leftover stock or what have you and it sells for a whole lot less.  For a larger family like ours, we look for deals whenever we can.  And remember, I have many w/ FAS w/ no cause and effect thinking as I've said before.  Things get broken here all the time, every single week.  Last week, it was the smoke detector( Max) and blender (Irina).  Today, someone squeezed the goop tube and ended up ruining Yana's MP-3 player that ways laying by it.  (Haven't told her yet).  Not intentional but both not using their cause and effect thinking skills.  Irina scrubbed the blender out like mad til it broke.  OCD.  Sometimes, I would just love for it to be a mess one day.  Sounds odd, I know.  But the germ-a-phob and ultra cleanliness get to you sometimes.   Did managed to find some really pretty thank you cards and notecards while there.  Irina has a penpal so she writes a bit more now.  Love that.  Had to take a picture of them just for kicks.  Well, that & I'm trying to practice close up shots.  I've always wanted to learn photography & am determined to do so.  Sorry, you guys will get a lot of stupid shots.  Like this:



It was then onto our monthly Sam's pilgrimage.  It truly is amazing how much faster you can go through a store w/ no kids along.  Really.  It had to have been a record for us.  And, best of all, we only got one cart.  ONE cart at Sam's.  Usually, we have 3 carts.  Since we are trying to incorporate more fresh fruits and veggies, we don't have a whole lot to purchase there anymore.  that's a good thing.  Got home & unloaded.  Kids started arriving home.  Fed them all homemade potato soup that had been simmering all day.  It was a race against time.  Had to be at basketball game by 3:45.  Yikes!  Yet, we did it.  And, off to the game...which was running late.  But before we could go, we did have to get ready.  Some pics from that process:

 

Part of our process to getting ready is making sure everyone has their gear.  This means we have to switch Bojan's leg out for his running leg.  Nik has seen this done many times before but for some reason kept laughing at it this time.  I'm not sure if it was the sock on the foot or what.  He was just cracking up.  

 

Alyona is not too happy right here.  She hates to eat unless it is sweets.  Always been this way & explain it in another post one day.  Been this way since we picked her up.  Doc said we can put a feeding tube in her but we said no way.  No easy way out (though I do understand feeding tubes are NOT easy).  Just for her, it is a power struggle thing.  A control issue.  However, rules are you finish your meal unless you are sick.  Or, we all have to be somewhere.  This time, if she did not finish, she was not going to play her game.  Reluctantly, she finished her meal.  

 

Nik testing out his balance and Bojan testing out his new leg.  Only thing w/ this is when we got there, we realized Bojan had never worn the leg on carpet before.  A little different as it has bicycle tread on the bottom of it.  Traction.  He got used to the carpet quickly though.  Kids w/ prosthetics are no big deal.  Especially, once you get used to fixing them, switching them out and just basic care.  It is second nature to us all and to the folks at Lowes Hardware.  Why Lowes you ask?  Because when Warren goes into the store holding Bojan's leg for a part, they all know the deal.  First time was a bit shocking for them there I think.  That is one hardware question they don't get asked too often I'm sure.  BTW, insurance will not pay for kids to have sports legs like this which I think is ashame.  We have Blue Cross Blue Shield for our insurance carrier. However, I heard they all do this.  We were able to get a grant to get his running leg.  VERY appreciative to the Challenged Athletes Foundation.  Really has made a positive change in his life.  


 

My three stooges.  Bojan, Alex and Nik.  Alyona was still eating at the time.  They all have grown so, so much this last year.  Warren says Nik gets older with every haircut.  He sure does.  They have so much fun playing Upwards Basketball.  It really is a wonderful program and we have a wonderful church that does it.  Ebeneezer United Methodist Church in Raleigh.  Can't wait to attend a service there one of these days.  Teens were supposed to go to start the youth group tonight.  However, too many projects happening for them.  Next weekend they should be able to make it.  

  

This is Nik dribbling down the court.  You should have seen him light up when he made the basket.  It was great.  Everyone was cheering and he felt like a million bucks.  Arms were waving and he was just screaming out of sheer joy.  The teammates are wonderful too. They help him & understand about him.  There was one kid from another team that I wished I had gotten his name to thank his parents. He kept coming over and encouraging Nik & giving him high fives.  Great game.  
 

Sorry for the sideways picture.  Since were at the church for hours upon hours & can't really afford to go to the consession stand all the time, we bring our own snacks.  I brought a bag of Sun Chips.   Kids ate them up w/ some water.  Remember, we had just eaten dinner when we left so it's a short snack this time.  Next Saturday, we'll be bringing our lunch too.  Max & Nik went to the car to get the chips this time.  


 

This is Alyona.  I have no idea why on earth she wanted to play basketball.  She was a cheerleader last year.  But, we let her.  At first, she was just standing there like this.  Later though, we actually got to see her hustle!  They had really big kids guarding her and she got pushed alot.  HOwever, she never complained about it, not even once.  I was proud of her.

Came home after 9pm and got everyone ready for bed.  Rephrase that, let everyone go to bed with no bath or chores done b/c we were too lazy to do so.  Sound better as a parent? 

Woke up today w/ tons to do.  Since this is already so long & I need to go eat dinner( big thank you Warren!), I'll finish up about our Sunday tomorrow.  Warren loves to make meals on the grill.  Tonight it is shrimp stir fry.  He grills the shrimp and veggies on the grill and we put it all on top of rice.  Whole family loves it.  He makes up a lot of his own seasonings and recipes & hits it dead on.  Only one recipe that none of us liked.  He is dreaming of a Chinese cookbook for some recipes.  Hoping I can find one for him one of these days.  He really is a great cook.  Kids like his scrambled eggs better than mine.  Tarragon is key w/ that one.  I do the baking & can bake.  Warren is more of the chef.  Though I do all cooking during the week, he takes over on the weekends and enjoys it.  I told him we should can the marinara sauce he came up with and sell it.  It is all organic & absolutely fantastic!  I told him we could sell it.  He didn't believe me when I told him for how much.  Showed him the organic sauces at the grocery store.  wow.  $8 to $10 a jar.  I think he was surprised.  Still, can't get him to do that.  I do think he is onto something and just doesn't realize it. 

Okay, choppy post.  Will post more later.  Kids are not going to bed like thy're supposed to tonight.  URGHH.  Write more and share more pics of basketball a bit later.