FAMILY CHRISTMAS PICTURE

Hmmm....what were we thinking?  I mean, there IS a reason why we have not been to a photographer since 2001.  It just seems that things never work out when it comes to the Wiggins Photo Session.

But my husband decided that this was the year.  We were gonna do it!  We decided to face the fear last night.  We, at the last minute, found this place and gave them a call.  Lucky us, we got a 5PM appointment.

Now, since this is a note about Bailey, I will skip all of the drama we experienced as we went to the wrong shopping center, then got lost on the wrong exit, then got stuck in traffic, then got frustrated because it was 5:20, then finally found the place at 5:35.

Bailey NEVER poses for pictures.  She sees a camera and turns her head.  She also never smiles for the camera.  Any smiley pictures that we have are merely a coincidence!  So, we had already accepted the fact that we may have a picture of four people smiling and one red head not even looking at the camera!

She did okay for the first 5 takes.  She was fairly cooperative in those group photos.  Then the lady brings out this fake tray of cookies and milk for daddy to hold.  WHAT?!  Did I mention that supper would be after the session?!  So there goes Bailey, trying to grab the plastic, glued on cookies off the tray; becoming more and more aggravated with each try.  So the crying and whining and spitting and scratching begins.

Needless to say, it was all down hill from there!  Long story short, that poor lady used every antic known to man, took over 80 pictures, and we were left with ONE picture that was useful!

***I apologize for the photo quality...i took it on my laptop...

Another Reality Check

The very familiar school phone number appears on my vibrating phone; at which point, I always assume the worst.  Your principal voice was on the other end.  My first thought was that your brother had gotten into some major trouble!  I was wrong.

She informed me of how you went to your 'favorite tree' during recess....and something happened.  A little boy had found his way to where you were, but you were not thrilled with sharing 'your tree' with him...at all.  So, in usual Bailey form, you begin spitting at him.  He, in turn, decided that the best course of action would be to hit you in the back with the toy he was holding...not once, not twice, but several times.

She told me how your back was so red.

And that's when it hit me.  You.Are.Not.Safe.  That's right.  I realized that in this dark world we live in, you will never be safe to fight your own battles, to seek out help when you are in a battle, or to share with me your feelings about the battle.

Had the principal not called, I would have never known you had been hit.  Never did you cry, for your tolerance of pain is so high.  Never did you tell an adult, for you cannot speak in sentences.  Never did you consider the situation, realize that you should leave, and take action, for your mind isn't capable of making such deductions.

And that's the part that scared me so much.  The mommy side of me immediately jumped to all of the worst case scenarios with which you could possibly someday face.  I was frightened thinking about you being hurt, attacked, confronted and never being able to call for help.  

If nothing else, I was quickly reminded of how necessary our (me, daddy, shelby, brody) our mission is.  We have been chosen to protect, speak, think, and act for you.  Our mission can be daunting.  It can be overwhelming, but none-the-less, it is ours to accept and carry out. 

I Knew It!

Well, we just got home from Dallas.  It has been a terribly long and exhausting week.  Let me bore you with a few details to get us up to speed, OK?

We left for Georgia last Tuesday (meeting nana/peepaw to drop off bailey) and spent the week with family/friends in preparation for Jessica Brown & Zach Newman's wedding!  Brody was to be in the wedding, Michael sang four songs in the wedding, and I catered the rehearsal/reception.  Needless to say, it was (almost) controlled chaos!

Michael preached Sunday morning and then we left out to meet nana to pick up Bailey and head to Dallas.  So we arrive in Dallas this morning at 2AM.  We attempt to find a decent hotel to sleep for a few hours before having to be at the hospital by 8AM.  They all wanted like $150. What.In.The.World.  Well, we finally saw this hole in the wall hotel and just stop there.  And it was only $65!  woot woot!!!!

Well, you get what you pay for...granted, it was clean, but the sheets were nearly see through!  no shampoo, so no hairwashing for me!  no iron/ironing board...so i went to the hospital looking like white trash.  the towels were the size of hand towels...by the time I dried my arm I was like, "ok, now how do i dry the rest???"

Anyway, we make it to the hospital and by 12:30 we have seen the PA 4 times, the dr 3 times, had a set of xrays and a cat scan.  Talk about efficient!

But the whole time, I kept telling Michael, "they aren't going to do anything for her."  And I was right!

The doctor was very thorough with us, but told us that he thinks we should just wait a year and see if her condition worsens.  He says corrective surgery is a major surgery that he doesn't like to just jump into.  So as long as her pain is low and she can handle it, he wants to hold off.

I knew it!  Bailey is never well enough to be normal, and she's not weird enough to get help.  Rock and a hard place, can't win for losing, and all those other sayings!

P.S.  On a good note, Bailey was better today than she has EVER been at a doctor's office.  She cooperated and never lashed out.  Brody was good, too, which was a blessing as well!  Thank you Lord for making the visit an easy one!  Thanks to all who have been praying.  She is still in pain, but I suppose the doctor's know best!

On Her Behavior...

Although Bailey's behavior was generally appropriate for her developmental level, it could sometimes be problematic.  She was sometimes physically aggressive, especially with her younger brother Brody.  This behavior had occasionally been noted in the classroom as well.  She had also been known to scratch/injure herself.  Those working with her should do their best to distract her attention and/or remover her form the situation as necessary.  This examiner observed that Bailey would sometimes turn away and lie down in order to avoid an activity, even kicking gently as if to mildly protest.  When this type of behavior occurs, staff should try to reengage her in the activity after waiting for a few minutes.  If overt resistance continues, a different activity should be tried

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!!!!