Life with Sophie

I’m still wading through the insurance woes… but I have heard that if our insurance covered her before then it’s believed that she has to continue receiving coverage… I’m waiting to have that confirmed so no we haven’t made any progress with testing or therapy.

On to our recent events!  We’ve been keeping busy this week   Tuesday we went to the Polar Express Dinner Train in Dillsboro (see other blog for photos and general gist).  Sophie did very well.  She seemed to understand that this was Xander’s thing and not hers, but regardless she was very sweet and well mannered.  She was very involved with the carolling on the way back to the train station but as soon as she recognized that the ride was almost over she started losing it.  We tried everything to distract her, redirect her, cajole her, ANYTHING…. but she just couldn’t reel it in.  She really did try to calm down, but it was just more than she could handle.  I’ve noticed whenever it’s something that she really enjoys or something that she knows she won’t be able to do again for a long time that she has a harder time of calming herself down.  She really did try… she was talking big deep breaths, but everytime another family would walk passed our table she would just start wailing and begging us to go again.  She ended up crying all the way to the car (Jim basically carried her) and then continued crying until I pulled a “mean mommy” and demanded that she stop.  She then snuffled and sniffled until she calmed down enough to start asking for something more to eat.  I really shouldn’t have pulled the “mean mommy” thing… but it’s been a long time since people looked at us with that “OMG that child is sooo spoiled” look and we got it from just about everybody on the train and for some reason it really got to me when normally it just rolls off my back.  Probably because she was so good during the meal and then tanked so horribly at the end.  I had to sit down and talk with her at great length about the whole thing.  She was much more understanding about the whole thing than I had expected her to be.  She actually seemed to get it that we just can’t do that in public to that extreme.  Saying that you had a good time and don’t want it to end is fine, having a full on meltdown is maybe not such a good thing.

So I hoped that she would carry that lesson forward into our Saturday outing with the Land Rover Greenville peeps (see other blog for photos and details).  She did great!  She was excellent at the breakfast thingy at the dealership and was mixing and mingling like a little socialite (“Well Good Morning everybody!  Nice to see you!  How are you doing?”).  She did get a little loud during the driving instructions but so were the other kids there, so I’m not upset about that.  She started getting upset when we left the dealership, but when we pointed out that everyone was going with us she immediately calmed down.  Oh, and some backstory… I bought her a medical id necklace that has her name, address and several ICE numbers plus a brief listing of her issues on it.  I told her it was her princess necklace and when she has it on she’s a princess and has to act like a princess… so no meltdowns.  So as she started getting anxious I pointed to her necklace and said “remember you’re a princess!” and she was like ahhh right! and pulled it back together.  So maybe a little trickery… but it worked.

So she had a blast on the drive up.  We’re kinda crazy go nuts parents and had the radio blaring and just had a great carefree drive to Asheville (I’m sure the cars in front and behind us thought we were insane, but regardless we had a blast).   When we got to the driving school we had another driver’s meeting and once again Sophie almost lost it when she realized the older couple she had taken a shine to were not going to be in our group.  I explained to her that we were all going to meet up again and that it was ok and she calmed down.  The actual driving course was a hoot and Sophie had a blast!  She was a great driving companion.  We had the windows rolled down and several times she would holler out humorous things to the other drivers (everyone would get out of their cars to watch each driver handle an obstacle).  My favorite being when we got stuck in a mud pit (see other blog for pics) and she hollered out the window “this mud is YUCKY!” which made everyone laugh.  She’s starting to really understand that she can effect people… like making them laugh, or smile (more on that later).  So anyway we finished the course and had another drivers meeting plus a group photo and once again Sophie started showing signs of getting anxious over whether the day’s fun was over.  It took a little more effort to convince her that there was still a picnic to look forward too, but luckily a couple of the other drivers confirmed what we were saying and she calmed down and was happy to get back in the car yet again.

At the picnic she was again in socialite mode.  She was exceedingly polite, thanking everyone for letting her come (unprompted I might add) and being sure to tell everyone that she was happy to see them there.  At one point she was doing her rendition of “Transylvannia Mania” from the Broadway version of Young Frankenstein (it was in the Macy’s Parade) which made everyone clap and laugh and she was really eating it up.  I didn’t try to stop her or guide her in anyway, and she had a grand time.  I think Jim and I were both a little apprehensive going into leaving as we were anticipating a major meltdown, but Sophie thanked everyone again, said her goodbyes and beat us to the car!  Not a peep out of her!  It was amazing!  She has since talked a great length about how much fun she had both there and on the train earlier in the week without getting overly emotional.  I’m hoping this is a sign of a good change