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.


  1. praying for you right now as you search for peace for things we as moms can not control, which is the hardest part of our job. Your Mylie seems like such a beautiful girl. I love hearing your posts about all your minions, I pray they see her for who she is and serve her with everything she may deserve and will always be put in the services of those who love her and challenge her and help her to grow in school. Your children are more than blessed to have you as their momma! Get rest my friend. I look forward to hearing how it went!

  2. Beautifully written piece about your beautiful girl. I'll be thinking about you tomorrow.

  3. Oh I'm nervous for you. I hope the assessment goes well and she gets the services she needs.

  4. Oh my goodness. Praying for you all. I know what you mean about those numbers. Just had a parent/teacher conference and oldest struggles with reading so it's hard to see some of his low scores when I know he's so smart in some ways but in this way just can't seem to catch up. *hugs*

  5. Thanks for all of the support and sweet comments. I read them as they came through at the doctor's office and it was like getting hugs from each of you. We made it through a very long hard day and I'm about to post the gory details:)