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. 


  1. I don't think you're mean. I don't have kids with special needs, but I taught for 9 years. I would much rather have a parent like you, than a parent who makes excuses for their kids all the time because of a diagnosis.

  2. Kudos to the both of you for the good job you do!
    Always impressed!