Wednesday, December 14, 2011

Off to Crazytown: Part 1(have pachyderm will travel)

Ah, where to start, maybe here:  We live in Lexington, Kentucky and they have a children's hospital here and they do assessments and...well, let's just say.... almost all of my kids' specialists are in Cincinnati.  There are lots of reasons we choose to travel so far and lots of reasons not to list those reasons publicly so I will give the biggest:  At Cincinnati Children's Hospital they treat your whole child.  The doctor's talk and send notes and have some clue what the other doctors who treat your child are doing.  While UK has some truly fantastic and talented doctors, their system is not well coordinated and they treat parts of children, (their brains, their bellies, their bones, their eyes, etc)  I am of the fairly loud and sometimes obnoxious opinion that my children are, in fact, more than the sum of their parts.  Therefore, in the words of Forest Gump, "And that's all I have to say about that."

My kiddos see the developmental pediatrics department in Cincinnati, therefore, I would love it if my children could have standardized developmental assessments performed there as well--but that would be too easy.  When we adopted our children, we kept their medical cards so that we wouldn't have to fight for more than 10 therapy sessions per year, so we could afford to take them despite their medical needs, etc.  KY medicaid will pay Cincinnati specialists but they won't pay for psycho-educational services there?!!!  So, I looked at my options in KY-there is an a place in Louisville in which I have no faith because I have read too many reports for too many kids on my caseload that were apparently written about pod children who looked like my students but darn sure didn't act like them.  And there's UK--whose biggest issue in life is that they hate being second to Cincinnati Children's and so they make it a total pain in the arse to work between the two.  Frankly, I was willing to take door number 3 and risk a zonk, so Cincinnati found me a third door.  Southern Indiana Rehab Hospital has been doing some stuff for them and they seem to like their work.  I know what you're thinking--why does KY medicaid pay Southern Indiana Rehab and not Cincinnati for these assessments?  My guess is because they haven't bothered to notice them yet or because they still use the northern Louisville area code or that Jupiter aligned with Mars when they made their rules and the age of Aquarius is all about some southern Indiana.  Whatever, it's best not to try to think like medicaid because your IQ might get broken.

Now, New Albany Indiana isn't much, if any, farther than Cincinnati so I was thrilled to schedule our appointment.  Just drive to the 'Ville  and cross the bridge.  (The 'Ville, that's what us hipsters like to call Louisville-it likes to call itself Kentuckiana because, I suppose, it thinks its too cool for the rest of us.)  Then, they took down the bridge!!!  So now, by all accounts from AAA, the hospital and a couple commuters I know, the ten minute drive across the bridge takes hours-AWESOME!!!

So, now Mylie and I have a hotel room in Indiana booked for tonight in an effort to try and not have her in complete sensory overload before she ever starts testing.  However, my husband has to be at work before the other kids can be at school so now I am packing all of us for overnighters.  By the way, Mylie was so pissed that she doesn't get to spend the night at her grandmother's house like the other minions, that we've renamed the trip to Crazytown "Our really cool princess sleepover" <in Crazytown>

The good news is, all of this packing craziness is distracting me from all of my assessment angst--I'll be blogging that tonight.  I thought I'd fill y'all in on what it looks like to pack a mama and 4 kids, three of whom have special needs for one night away.  Here goes:

I packed the three other minions in two reusable shopping bags because they are easy to check and recheck and for the kids to get their stuff independently.  Midnight Muncher Minion's meds are so complicated that I put in his entire weekly med organizer--then I worried that it might get dropped and spilled so I wrote out every medicine in detail anyway and traced and described each one by color, shape, and stamp--just in case.  I packed Evil Genius Minion's pediasure, diapers and orthotics, his walker and Convaid stroller chair are in the van which mom will keep so she can transport all of the minions.  And Diva Drama Minion's meds including color coding for her different inhalers are in there too because neurotypical development does not mean med-free--that would be too easy.

Now for Mylie and Me:
 That's just the Nicole and Mylie portion.  Two outfits for Mylie just in case we have a spill or something worse, one for me, two coats, diapers, toiletries, toothbrushes, medicine (Mylie: 2 different seizure meds, melatonin, a medicine to keep her medicine from making her sick *sigh*  Me: Alieve, Excedrine, prescription migraine medicine, Prozac--nuff said?  Oh yeah and emergency rectal valium in case of terrifying mega seizure after which I will also need valium, hopefully not rectally administered.)  Now, mama won't be able to sleep tonight so there's also a computer, iPod, a camera, a book (Harlen Coben-all thrill-no thinking required,) and pen and paper in case there is no signal at the Dr. Office tomorrow and I'm inspired to write something.  Now, MylieMylie packed a backpack of things she "needs" and, of course, a five foot stuffed elephant.  Mylie sleeps under this elephant each night because the weight of it provides calming deep pressure.  I have traveled overnight without it, I won't be doing that again.

SOOOOOO, I THINK this is it for all of us:
And now, I am starting to breathe.  I know it will all be fine.  I think it will all be fine.  I hope it will all be fine.  I'm sure we'll survive the traffic.  I am not so sure Midnight Muncher will do okay at school tomorrow but I warned his teacher.  I know three minions will do okay at YaYa's.  I hope my husband takes the dog out, that's not usually his job.  See folks, Crazytown.  Mylie is a little stressed too, and she looks better than me.


  1. Is Mylie autistic? Just wondering because one of my critique partner's adopted twin boys who are autistic and she wrote about a blanket they use that helps calm them. It was the first time I'd heard about that.
    Anyway, absolute FAVE line in this post: "Whatever, it's best not to try to think like medicaid because your IQ might get broken." I would love to stick that on facebook!! LOL Reading on to see how your trip went...

  2. Mylie has Fetal Alcohol Spectrum Disorder which causes sensory integration dysfunction. Sensory integration issues are also really common in people with autism. BTW: You are welcome to post my medicaid line--it is so incredibly true!!!