Friday, December 16, 2011

Did I say Crazytown? I meant the 7th Ring of Dante's Inferno!!!

Oh my, it has taken me a full 24 hours to post this because I was, well I still am, EXHAUSTED.  Unfortunately, if I am exhausted, poor Mylie-Moe is whatever is much much more tired and over stimulated than that.  However, we made it, we survived.

We arrived on time to the hospital and got all registered.  It was the usual shuffling room to room, and getting sent back to the waiting room.  Poor Myles must have lined up all the farm animals in there five times only to have to put them back before she could play with them.  I'm not sure why they bother putting cool toys in waiting rooms when they never leave you in them, they always shuffle you off to some small room with bad art and magazines in Spanish--luckily I can still read more Spanish than I can speak!

Then, Tricia, our evaluator, came and took Mylie for about 25 minutes and then brought her out to check in with me (at Mylie's request.)  They did this two more times before Tricia finally said that I should come back with them to see if Mylie would work more with me there.  She made it through two more tests and then, poor Tricia took us to a mock grocery store where patients can practice shopping with walkers, wheelchairs, etc.  Mylie was in heaven, she loves play food so she loved playing there.  Unfortunately, that backfired because that's all she really wanted to do for the rest of the day.

Finally, they decided to have the Psychologist come in and talk to me and let us go for an early lunch.  The doctor was fascinating.  He didn't seem nearly as interested in talking about Mylie's functioning as things to which he already had access like her MRIs, her seizures, etc.  Ummm, really?  He did ask if there was anything that I thought he should know... Oops, there was a lot, like all the stuff that wasn't already in his $%^*&! file.  In his defense, he obviously hadn't read the file because he was very interested to hear that Mylie's birth mother used drugs and alcohol.  I find it interesting too, however, most people assume that is an issue for Mylie when they read that her primary diagnosis is Fetal Alcohol Spectrum Disorder...

Finally, he recommended that we go eat lunch at Pizza King.  He billed it as something like Gattitown.  Mylie was psyched; I was worried about all of the stimulation when she was already in iffy shape.  Let's just say, Pizza King ain't no Gattitown.  We sat in booths which had TVs in them that you fed with quarters to make them go.  There were controllers for video games but they didn't actually have any games on the TV.  They did have an electric train that delivered our drinks.  Mylie was pretty sure she was controlling the train with our lovely, filthy controllers until all the people around us quit ordering drinks and the train stopped running.  The "games" were a cotton candy making machine and two claw games.  We "played" them.

Then, we went back to the hospital where my daughter proceeded to take more tests, get more exhausted and more frustrated and feed some fish. (Not necessarily in that order.)

Even though I have given some of those assessments, I honestly can't remember how a five year old should perform on them.  I know she didn't reach the basal score for a couple and they were discontinued.  I know that Tricia, Mylie and I were all quite thrilled when everything was done.  I also know that Mylie was a trooper, even if she didn't always seem that way.  I know that she was trying because she told me at lunch that she just didn't know the answers, which broke my heart.  I know that she was concentrating because her word finding fell away when she was trying to understand concepts.  I also know that she was doing her best because the screaming didn't start until we got on the interstate.  The screaming started on the bridge which only took about 45 minutes to cross in the opposite direction at that time of day (as opposed to about an hour and 20 minutes or more the night before) and it continued until she finally fell asleep just past Shelbyville.

I know that some of her issues presented themselves during the assessment.  I wonder what the assessment will say.  I wonder what it would say if they'd done the assessment over a couple of days.  I wonder what it would have said if they'd attempted any form of sensory assistance between sessions or if they'd assessed her in a child-sized chair where her feet touched the floor.  I hope they saw how amazing she is.  I hope they noticed and noted things about Mylie beyond what was on the test.  Most of all, I hope they got everything that was needed and make a report that will be useful for obtaining services, etc. because I'd rather gouge my eyeballs out with flaming spoons than put her through that again any time soon.

So, there ya' go, that was our experience.  We shall see what the good doctor says about the results.  Thanks so much to all of the my friends and fellow bloggers who responded here, on FB and on Twitter, it means more than you will ever know to feel not quite so alone.  

Wednesday, December 14, 2011

Greetings from Crazytown: Part two (When all is quiet.)

So, here we are, in Jeffersonville which is close to the hospital.  As predicted, it took FO-EV-AH to get here.  Given the state ol' girl was in when we got here, I think the overnight was a good idea.  We went to dinner, she had a bath, watched part of a Christmas special and she's out under her elephant and snuggled tight against my every curve.

As much as I love the deliciousness of her smell, the rhythm of her breathing, my heart is heavy.  We need to do this assessment.  It will be a required part of getting services we need for her.  Still, there are so many ways for it to go wrong.

Now that most of the logistics are covered, the nagging question isn't so easily quieted.  Will they see her?  These people who will take, "3-6 hours with or without breaks as needed by the child," and write a description that will determine a LOT of things for the next few years--will they really take in all of her?

  • Will they notice that all of her speech is scripted?  Sure, if they greet her in a common way, she'll respond appropriately, but if they ask her something she doesn't expect, or if they use a unconventional greeting, she will be at a loss.  
  • Will they know that she knows over half of the letters and sounds at our house (even in different types and places) but outside our house--it drops to just a few?
  • Will they know how many skills she's had, I mean really had, and lost after a seizure?
  • Will they know that just because she can point to a picture or even say their names in a clinical setting, on rainy days or crowded places, she can't find that word in her little mind?
  • Will they know that if she complains that she's hot, she really means she's tired?
  • Will they know that if she says she's hungry, she's probably not procrastinating but she could be hungry (because she's a grazer) or thirsty or tired (she never says she's tired)?
  • Will they recognize that first humor, then obstinacy are her ways of hiding that she doesn't know how to do what they are asking?
  • When she gets worn out, will she act funny or will she throw a fit?
  • Do they know if they push her too far, she may not melt down there but may fall apart all the way home?
You see what I'm saying here?  That if Mylie's having a great day, she could look too good on the assessments.  In other words, she could actually look higher functioning on paper than she functions in real life.  This could, potentially, keep her from getting services that she may need in the future--and this happens to kids with FASD all the time.  If she is having a bad day, she could look far worse than she typically functions.  I want them to see who she really is, both what is great and what isn't so great right now.

Then, there's the other piece.  I'm a special educator.  I know the assessment tools.  I have a pretty good idea of where she functions.  Still, in a couple of weeks, I will have to go to an office and sit and listen to someone tell me what they pronounce about this little one I adore.  They will tell me scores and percentiles and age equivalencies and I will know these don't mean much but they'll be hard to hear.  Hearing things about your child (other than how cute they are is hard, no matter what.)  Tomorrow, I lay the groundwork for that next meeting, a meeting I dread.

So, not my funniest post, I know-but it's honest.  I'm spilling out the things that go bump in the night.  I don't know how tomorrow will go.  I don't know if I'll ever get to sleep.  I do know, that none of it will make me love my girl less.  None of it will make her less.  So why does it bother me so much? Why am I so afraid of what they might miss?  I wish I had answers, tonight, just monsters under my bed.

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.

Sunday, December 11, 2011

One Mama's tales of Minion Mayhem: Mama's Top 5's

One Mama's tales of Minion Mayhem: Mama's Top 5's: Okay, my last post was a bit of a tearjerker so, as promised, this one brings the silly. I offer some top 5 lists that apply so perfectly t...

Mama's Top 5's

Okay, my last post was a bit of a tearjerker so, as promised, this one brings the silly.  I offer some top 5 lists that apply so perfectly to my minions.  Laugh with me, and at me, and please fill in your own in the comments!!!

List number one comes in this busy holiday season but, in truth, it comes at other times around here.  I know some of y'all must be with me on the desire to avoid all stores, especially grocery ones.  That said, here ya' go:  THE TOP 5 WAYS TO KNOW MAMA'S AVOIDING THE GROCERY STORE

5.)  Mom and Dad join the minions in a chicken nugget and mac and cheese feast--bleck!!!
4.)  Mama is pretty sure there is a pasta dish to be made from frozen onions and peppers, raisins, and baby marshmallows.
3.)  I consider, just for a second, checking what The Midnight Muncher Minion has hoarded under the bed before making lunch.
2.)  A minion asks, "Hey mom, what are you putting in the macaroni and cheese for dinner tonight?"
1.) I spend at least five minutes trying to convince myself that giving the kids popcorn and a glass of milk for breakfast is really the same as giving them wholegrain cereal.

(Before anyone gets too concerned, this is sarcasm folks.  I'm still kinda' married to the popcorn and milk=cereal thing though.)

The second list is an oldie but goody:
5.)  You can identify the child who's had a potty accident by smell--Too graphic you say?  Buck up, this job isn't for the faint of heart, y'all.
4.)  You've ever had someone tell you what a sweet conversation they had with your child about her pet cat only to have to tell him/her that you have no cat. (Bonus points if it was a doctor!!!)
3.)  When you go to a check up and bring a written list of your child's medications, it's on a huge scroll that looks likes Santa's "nice" list.
2.)  You realize that about half of the conversations you have in a day would have had the same outcome if you'd had them with Dory the Fish from Finding Nemo.
1.) I've said it before, I'll say it again:  You have to fight off the urge to laugh hysterically when someone asks you if you want regular coffee or decaf.

So far, I hope you've been laughing with me--now ready to laugh at me?
5.)  My 3 year old (Evil Genius Minion) learned to tell me to "shut up" this month, he has not yet said "I love you"--Thank you, thank you older siblings:(
4.)  Pink Princess Minion has thrown her arms around me and said, "You're so fluffy!" all. month. long.
3.)  Midnight Muncher Minion asked me if I ever went to a concert.  Cool, I thought, he knows how much Mommy loves music--until his next question.  "Did you see Beethoven play his music there?" *sigh*
2.)  Drama Diva Minion asked if I was planning to skate with her and her friends at her birthday shindig on Saturday.  I told her that I wasn't planning on it, feeling guilty that I was letting her down.  Her response? "Good, I was afraid you'd embarrass me."---NICE!!!
1.)  Today, the Midnight Muncher Minion was playing with a toy pirate.  He asked me if the pirate was a boy or a girl.  I told him it was a boy and he responded, "It can't be, it has a ponytail."
     "Some men wear ponytails too, Muncher.  Lots of pirates did.  It must be a boy, he has a big handlebar mustache."
     His reply, wait for it, "Well, mom, you're a girl and you wax your mustache."
And there you have it folks, the zing to beat all zings.  Please feel free to count the fact that he is still breathing as one of my miracles if I am ever nominated for sainthood.  


Monday, December 5, 2011

One Mama's tales of Minion Mayhem: Moment's Captured: MY Mylie

One Mama's tales of Minion Mayhem: Moment's Captured: MY Mylie: This post is in response to a prompt by two fabulous bloggers, Galit at These Little Waves and Allison at Mama Wants This . They had this ...

Moment's Captured: MY Mylie

This post is in response to a prompt by two fabulous bloggers, Galit at These Little Waves and Allison at Mama Wants This.  They had this amazing idea to capture a person in image and words.  Theirs are lovely as are so many others that have already linked up.  The moment I saw them, I knew that I had to do this.
I chose to capture Mylie in mine.  I wanted to do this for Mylie because her labels are so ever present on my mind and tongue.  You see, unlike my sweet Isaac, Mylie’s disabilities aren’t obvious at first glance.  Unlike Conner, her disabilities aren’t shrinking into the background.   If we DeZarns are (proudly) square pegs, Mylie is a hexagonal one.  The world isn’t cut neatly to fit her.  Her issues are too big for some settings, too small for others.  She doesn’t fit nicely into pre-prescribed boxes.
In order to be sure she gets services she needs, to be certain she is safe with other caregivers, I have to say: 
·       Please remember loud noises upset her
·       Please remember that while she’ll jabber your ears off, she usually can’t tell you if she’s hungry, or thirsty, or hot, or cold
·       Please remember when she’s tired swallowing is difficult and potentially dangerous
·       Please remember she does not understand much of what you say
·       Please remember she’s doing the best she can
·       Please remember sitting still is not in her wheelhouse, it could be a seizure
·       Please remember my baby is not perfect, or fine, or well

Yes, my friends, this mama knows all of the things Mylie isn’t and, while I am immensely proud of her, I cannot afford to let the world forget all that she lacks.  However, this mama also knows my girl is magical, miraculous, stunning. 
So today, I share in words and image the things that the world has to know but also the words of my heart.  The pink words, because all words that are truly important to my baby girl are pink, these are the ones that I celebrate with you. Thank you, thank you Galit and Allison for providing this opportunity to do so.

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