So Little To Say, So Much Time....Strike That! Reverse It...

So, let's see.  I have a copy of Bailey's last evaluation.  It's time for a new one, but we all agreed that she has not made enough progress to warrant a new one...if we did, we were all agreed that the numbers wouldn't change much at all.  So, while reading over all the info on the eval, I ran across some funny descriptions of Bailey...

Shall we begin?

"Bailey presented as a very light-skinned, somewhat chubby Caucasian girl with long, full, red to strawberry blonde hair and blue eyes. On the first two informal observations, she smiled readily at the examiner and engaged in some simple play, crawling on the floor after the examiner, passing a small plastic spool from hand to hand, and giving lots of hugs.  the 2nd observations was more formal; the examiner simply took notes and did not attempt to engage Bailey in play.  For the most part, Bailey ignored the examiner's presence on that occasion, and her general demeanor was much more serious, with less smiling and hugging general."

...I especially like the chubby part!

....More to come....

ARD, IEP, & LENGTHY DISCUSSIONS....OH MY!!!!

So it's that time of the year again, oh yes...the dreaded ARD (admission, review, dismissal) meeting including IEP (individualized education plan).  OH JOY!

Basically we (principal, ot, slp, pt, teachers, psychologist, and myself) sit around a table and decide what "goals" need to be addressed this year.  Definately NOT the normal kid's goals.  Technically, Bailey should be in the 4th grade.  Instead, she is still at the Pre-K thru 1st grade campus in a class simply named "life skills".  The meeting will be a time to reassess, making sure she is still in need of this class.  At the end, I will receive a copy of the meeting, complete with reasons why she IS still in need:  Mental Retardation, Speech Impairment, Other Health Impairments......well lucky us!

Instead of wondering if she's keeping up with the class in reading comprehension, we strive just to stack blocks on top of one another and manipulate basic toys.  No learning of the three R's (so to speak)....we are just working on the basics.  Here's a few goals that we shot for last year:
*stand from the floor independently
*ascend curb without assistance
*point to herself in mirror
*remain dry, without accidents for 4 out of 7 days of the week

And here are few that she has "mastered":
*hold and examine offered object for at least one minute
*attach and maintian a mutual gaze with caregiver (bonding) for greater than 3 seconds
*grasp small object with thumb and index finger
*crawl forward alternating arm and legs
*assert emerging semi-independence in physical activities: mobility, self feeding, drinking from a cup
*respond by looking, moving, etc to sudden loud directed noise

And every year I get the little 6 weeks reports with the same 'grades'....Work In Progress

Where Brody has homework and is becoming quite fluent in reading and a master of math (age 6, 1st grade), his big sister Bailey is applauded if she has no potty accidents all day.

For me, the meeting will rehash how disabled and behind and different and vulnerable and dependent and alone and awkward and pitiful Bailey is.  It is simply a yearly confirmation of her state of mind and the fact that she will never live an independent life outside of my home.

Do I despise this?  Absolutely not!  As I've said many times before, I accept God's plan for Bailey's life....I really do.  But as a mama, I just REALLY REALLY REALLY want her to improve, learn, become independent, make her own choices, talk in complete sentences.  My wants and desires are REAL, they are STRONG, and I am fully aware that they may not be God's will for her.  Am I confusing you?  I hope not...although I do understand and completely trust in what God has in store for her, I am still flesh and only want the best for her!

I remember the day well....

I was in my 32nd week of my 3rd pregnancy.  Shelby was nearly 3 years old, followed by a miscarriage in November of 2000.  I was set to have a C-Section on October 18, 2001.  It was August and so VERY hot.

My ankles we as big as my thighs.  My blood pressure was high all the time.  I knew that preeclampsia would set in sooner or later, just as it did with Shelby (who was delivered at 33 weeks, weighing 3lbs. 14oz.).

....Anyway, after trying hard to get my BP down (Michael was checking it on the hour), we decided that maybe I should just go on to the hospital.  We lived in a small town with a small hospital.  After getting to the hospital, my doctor informed me that I would need to deliver now....but that this hospital was not equipped to perform a C-Section on a 32 week baby.  So off I went via ambulance an hour and a half North to Birmingham, AL.

Family was called in, I was hooked up to all the monitors and given all the horrible meds to keep me from having a stroke...and steroids for the baby's lungs.  I was used to this, as I said before, because I experienced all of it with Shelby also.  I was prepared for the C-Section when the doctor came in and asked if I wanted to have a VBAC (vaginal birth after cesarean).  What?!  Really?!  I can do that?!

I was so excited because I really wanted to have that experience at least once.

So, i was induced and experienced labor for 22 hours!  What was I thinking???
I delivered Bailey at 11:35PM on August 31, 2001.  She weiged 4lbs 4oz.  And, as suspected, she was whisked away immediately to the NICU, only giving me a quick glimpse of her from a distance.

Bailey remained in the NICU for 24 days.  We drove 1 1/2 hours one way every day for those long 24 days to see her and feed her.  It was very hard to leave her at that hospital every day.  I should have known that this would only be the beginning of a life long journey.

We are so happy to have Bailey Dyan Wiggins in our family!  She is loved and adored by all of us!!!!

You HAVE to read the ENTIRE note...

So, yesterday's note was a bit of a bummer....I am fully aware of that.  But as I have said before, I wanted to be able to share it ALL with you.  Not just the good days, not all the sunshine and roses.    ALL.OF.IT.

So, I have.  There are posts that are uplifting and there are those that certainly are not.  Be sure that I do not post anything in order to receive sympathy or gain attention from anyone.  I just really want to post the truth, from a mother's heart, from a born again Christian who knows God is in control, but who is still flesh and who still is growing and learning as a child of God each day.

That being said, I have a wonderful announcement to make!  There will be those who will read the following and simply say it was coincidence, but I KNOW Who did it!  I know Who is worthy to receive all glory and praise.

This morning I took Bailey potty when she woke up, just like I do every day...she pooped a bit. (again, not hiding all the wonderful details with any of you! ;) )  I got her completely dressed and she got whiney.  I tried giving her a drink. NO.  Barney. NO.  Music. NO.  Cards. NO.  She walked over to the step that leads to the bathroom and she leaned on the wall.  "Maaaaamaaaaaaa" (over and over).  I was getting aggravated with her by this point.  I could not figure out what she wanted.

Then she stood at the bottom of the step and pointed up and whined.  Could it be???  No.  Certainly not.  Well, i will just do it anyway and see.  I asked her, "Do you need to go potty?"  Her body language (you have to know her) said yes.  So up we go to the potty.  And can you believe it????  (drum roll please)  She pooped!  That's right people....

BAILEY DYAN WIGGINS LET ME KNOW THAT SHE NEEDED TO GO POTTY!

It was not only an answer to prayer, but a reminder to me that God is still on the throne and (like Bro. Daniel reminded me) He hears the prayers of His saints!  (can I get an Amen?!)

hello blog peeps!  i am so sorry for having neglected this blog....i HAVE been blogging, but on facebook.  so i am importing all of those today.  so take into consideration that these have been written over a period of a few weeks!

BLAH!

That's right, BLAH!  That's all I have to say about it.  I don't even know what to think anymore.  Sometimes I feel so proactive, confident, and sure things will progress and then there are times when I just feel BLAH about the whole situation.

Bailey's first day of school was yesterday.  Last year she had three classmates.  Two with autism and one with downs.  We were the first to arrive.  I asked her new teacher if all the kids were returning this year.  Well, the two boys with autism were 'promoted', 'moved up'....they have PROGRESSED.  Bailey is the oldest one in the class, at only a week from being 9 years old. I wonder when she will move on, as she should be in 3rd grade.

Her body is aging, moving on, while her mind is at a stand still.  NO PROGRESS.  In fact, I cannot think of any progress she has made withing two years.  Do you hear me?  TWO YEARS....NO PROGRESS.  For those with only normal children it may be hard to understand the importance of this.  But we (the wiggins family) live with it each day.  Almost like that movie where the guy wakes up to the same day every morning....the same thing each day.

And it is not 'her fault', I do not blame her nor do I blame her teachers (they do their best), I guess I don't blame anyone....it just really stinks sometimes.

So what would I consider progress?  ANYTHING!  Maybe learning a new sign, initiatng the need to go potty, anything at this point.  Granted, some of her formal skills have improved: feeding herself, her ability to understand.  But nothing new.  Two whole years and no big "AHA" moment with her.

It just saddens me.  I have begun to research a little about MR (mental retardation) since that was how the school psycologist labeled her.  I will post a note about that later.