Thursday, January 31, 2013

Summer's antics on trips

Someone asked a question about what Summer did on our last trip.  As some of you are aware, I have six children w/ varying degrees of FAS.  Summer does not have FAS but does have c-ACC(agenesis of the corpus callosum).  She has no connection between the two hemispheres of her brain.  It's totally missing.  She also has colpolcephaly and a few other dx's relating to the brain.  Anyhow, c-ACC symptoms/ issues are pretty much identical to FAS.  I'm on both these list serves or groups and it is amazing to me that even though things present pretty much the same, the reaction of hte parents is totally different.  I have theories on this as to why but will keep that to myself since I'm in no way shape or form qualified to do that.  Just know it's very interesting. 

Anyhow, the symptoms are SO similar to FAS.  And, we all know FASers don't do well w/ change of routine.  But, if they are to survive in the real world as adults, they need to be able to learn how to deal with it as life is not always routine.  Every time we go on a trip, Summer is just not the best.  Past two times in fact, she's been horrible.  Just horrible.  This past trip, Summer stepped it up a notch for us.  She peed and pooped in her pants.  We have been out of diapers finally for MONTHS now.  URGHH!!!  So, no diapers did we take.  At one point, Alyona and Reni took her to the bath house for a shower.  No biggie.  Bathhouse was extremely close to our site so I didn't mind.  She knows how to shower, shampoo by herself and does it at home every night so figured no issue, right?  Wrong!  Dead wrong.  Yana went a bit later to the same bath house.  A lady stopped her and told her it was ALL the little one's fault.  Lovely, just lovely.  Apparently, Summer was running wild, screaming, not listening to her sisters, and even running around the bath house naked.  Yes, naked.  I was appalled by the behavior.  She is further banned from future camping trips of having any semblance of freedom.  Said fine, next trips, you either go w/ mom or Irina to the bath house or you get a shower in the rv. 

Just didn't want anyone to think she's an angel all the time.  LOL.  It is always on trips though for some reason.  Told her she best shape up soon or we're leaving her home next trip.  She did not like that idea.  We have trips planned (away trips) for May,  June, August, September, October thus far.  Rest of the trips are day trips.  I know she can behave b/c my other kids have done it.  We used to only be able to be gone 3 days tops w/ our FASers.  Now, a week.  It's nice now b/c we don't have that added stress.  Just have to get Summer in line and our trips should run smoothly.  I think that answered the one question of what Ms. Summer did.   Next trip, report will be better or you're going to have one sad little girl.  Summer knows what she did was wrong.  Don't think for one second she doesn't.  I've said it before and I'll say it again, I don't care what their dx's are, they will learn proper behavior.  Period.  My kids know I mean it.  Ask any of them.  Shoot, none misbehave when a field trip is involved.  One year when Irina was little she got caught lying.  Told her she wasn't going on the field trip.  It was to the State Fair.  Teacher played along and made sure to tell her how good it was.  She never ever did that again...misbehave before a trip.  Oh, and it was more than just lying.  Made her stay in bed all day.  She thought at first she was going to stay home, watch tv, etc.  All the other kids now tell this story.  The newer kids are like "she can do that?!"  Yes.  With FAS kids or brain damage, you must say what you mean and mean what you say.  They CAN behave in public and they CAN do it.  I do not use excuses.  I've actually heard other kids say when they're misbehaving in public "my brain doesn't work right."  What?!  That had to have been taught to them. Never would I let my kids think that.  They are responsible for their own actions in this world brain disorder or not.  Just my thoughts.  One of mine used to run around like a squirrel on speed.  Never stopped, banged head against the wall, got into everything, etc.  Unacceptable.  Takes some time some times but it can be worked on.  When my kids misbehave, say throw a shoe and knock out a second story window the night before a big trip, they aren't allowed to swim at the hotel pool the next day and have to watch everyone else having fun.  Trust me, they can and will learn.  I know I may get heat for this post and that's okay.  Just my opinions and how I raise my kids.  I just don't want them thinking FAS or c-ACC or whatever dx's they have, give them permission to behave badly.  Call it mean, I don't care.  Right now, just need to work on Summer's behavior so she can function in society when she's an adult.  That's my goal. 

Wednesday, January 30, 2013

Our Fashionista

Wow, am I ever behind.  As I've said before, life comes first, blog comes last.  There are quite a few changes going on at Chaos Manor.  For now, a lot will have to be behind the scenes so to speak.  Don't worry, nothing bad whatsoever.  Just some things have a proper time and place to be disclosed.  I'm saying this because as we adjust around here to different happenings, the blog will most likely take a backseat for about a week or two.  When the time is right, more will be said.  I know, I know, I hate it when blog people do that too.  LOL.  Some of it, I will say just so you're not totally in the dark.  Our van is being sold.  On  the hunt for another.  Our house will be put on the market as soon as the van is sold.  Honestly, we only need to deal w/ one sale at a time.  The rv will also be sold most likely.  Want to replace w/ a travel trailer but time will tell.  Also, depends on the next van/bus we get and towing capacity.  This is all a small part of some changes around here.  Again, just changes for the better.  Absolutely nothing bad going on whatsoever.  Want to make that clear so no speculations start happening. 

This was not the original topic but figured I'd say in case I wasn't on here in a few days time.  Today, we had friends stop by and hang out.  Was great.  In the mid-70's today so was perfect for it.  They even brought us lunch!  Our kids always get along which makes things even better.


Fashionista she is not.  Summer loves to ride her bike.


Logan and Nik.  They really are close brothers.  Never would have thought it.  Shoot, Logan in Bulgaria would make fun of everyone w/ any sort of disability.  Now look at him...giving his brother a ride.


I think they're both enjoying the ride.


These pics got out of sync again.  Here's Summer and Logan.


My friend Jennifer attempting to put Summer on the bike for a photo op.  Summer was going to have none of it at first b/c she thought her brothers would drop her.  LOL.  

And we present the three stooges.  Well, maybe just camera hogs.  


My little fashionista would make it on the runway, huh?  4th of July t-shirt, tutu and topped off with snow boots.  No, we didn't go anywhere today.  I let my kids dress themselves.  I'm not out to impress anyone.  Though, I must admit before I became a mother, I thought my kids would match, have clean clothes, wear nice things and get botique type clothing.  LOL.  I'm laughing my butt off at that thought now that once was there.  I seriously can tell when I go out if parents dressed the kids.  VERY easy to spot.  Shoot, my kids would go out barefoot to a store if I let them.  


Reni ready to get back on the bike despite her road rash crash yesterday.  A neighbor helped walk her home.  She was with Alex.  I make them ride w/ a buddy.  We see how well that buddy system worked when she came home with the neighbor.  Alex said, well, I had to come tell you.  I said I would have rather you not left her there alone.  It's a matter of learning as we go here.  Reni is perfectly fine.  Just road rash and some torn jeans.  Notice how we're all in shorts and it's the end of January.  Unreal.   No winter.


 Still bike riding.  Max inspecting the rv that he does not want to go.  That decision still has yet to be made and a lot depends on the kind of van/bus we'll be able to purchase. 


No, she's not trying to model here.  Just caught her off guard.  Don't you just love the dirt?  Another long story w/ the yard but not this post.


Nik, loving the camera.  

Hopefully, I'll keep up w/ the blog some more this week.  No promises.  I can just say Chaos Manor is truly hopping and changing right now but it is a very good thing.  Much more to come the next few weeks, I'm sure.  Busy around here but better to be busy than board. 

Tuesday, January 29, 2013

Manic Monday

Almost 7 so you can tell it's been a rather busy day.  Of course it's Monday again.  Try to catch up on a few happenings here this week or last.  Here goes:

  • 5 kids to the dentist today
  • NO issues or cavities!
  • 5 kids go to the dentist next Monday and we hope the same result
  • Dentist gave a bag full of brushes, toothpaste, and floss
  • Warren got hurt this weekend
  • ortho appt for Warren tomorrow at 8am
  • speech therapy this week
  • football practice this week
  • dance this week
  • warmer weather this week
  • van is up for sale
  • looking for new vehicle that seats more.  Outgrown our 12 passenger
  • selling rv soon
  • selling house soon
  • found a suit for Bojan for all his concerts
  • received an awesome surprise package of toilet paper today.  Household items add up VERY quickly around here so this is greatly appreciated.
  • kids broke popcorn popper we got for Christmas.  Bummed as they eat it almost everyday.
  • "old timer" (microwave borrowed from a friend) is hanging in there
  • Alyona broke another picture today...glass everywhere (rest of us were at the dentist office.  Yana was in charge)
  • have a house guest for awhile
  • having brats for dinner
  • need to workout this evening
  • waiting for eye doc to call for 3 appointments
  • need to fax sheet to Duke for Shriners
  • getting permission for Bojan to drop PE this semester
  • talked w/ Max's new English teacher
  • Bojan keeps missing the bus...URGHH!!!!
  • going to a groundhog festival this weekend
  • lots more going on behind the scenes but I've run out of time
Figures, can't even get a manic Monday post done on Monday.  Been that kind of busy around here adjusting to a bit of a new normal here and there.  In addition, Warren really hurt his knee.  Today, the ortho told him in all likelihood, a torn MCL.  Great knees is, we can probably avoid surgery w/ the knee immobilizer gizmo.   Relieved.  More updates and going ons later.