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!!!!

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.

joy

It begins small and creeps in upon us unaware.  We are affected immediately by its presence and there is no way of escape.  And before we know it, we too are caught up in this mass hysteria known as The Joy Of Bailey. 

Seriously, there is nothing more infectious in our home than when Bailey gets a case of the giggles.  She has this raspy smokers laugh that is hearty and oh so sincere.  She doubles over, her whole body is tense and her eyes get all squinty.  Her big ole Spongebob Teeth are quite prominent and her cheeks are raised to great heights.  Her breathing nearly comes to a complete stand still and there is not one fiber of her body that is not affected.

And more times than not, we have absolutely NO idea what brings on these fits. We will all just be sitting around and then she will just explode in heavy laughter.   I believe that the Lord has simply placed a joy in her heart and that He uses her to bless us (and others).

This God given joy makes my heart happy because it is an outward manifestation that through all the other struggles in her life she has been given an enormous truck load of pure happiness!  What a blessing!

There are days...

There are days when Bailey can be so super sweet: she wants to hug and kiss all over us, she laughs and talks a lot, she is content watching Barney and shuffling cards. The gleam in her eye is breath taking, her smile is addictive and her quirks are so silly and innocent.

Then there are days like today....

Days when, no matter what we try, nothing makes her happy. She is in attack mode all day. She screams about everything. Nothing pleases her.

The whole house tries so hard to satisfy her. The other kids put their wants on hold in order to help make her happier. They suffer the scratches and kicks that her outbursts bring. It's like the whole day is spent on her.... in vain. We all look tired and give out. I know personally days like today make me tired....tired physically (as i have given her 2 baths today) and tired mentally (as the non stop...seriously, non stop...screaming goes unappeased)

It takes all we have some days to make it with our sanity. I take small reprieves in the bathroom...in other words, I hide there for five minutes at a time. It is there that I pray. It is there that I seek wisdom from God on how to deal with the stress that she brings at times without becoming resentful and having bad feelings toward her. It is there that I take a moment to let out a few tears, as I do not want to show vulnerability...I have to be strong, I have to 'man up' and just 'deal with it'.

Here in this small room is where I come face to face with my fears...
will I ever know a time that I do not have to help her onto the potty?
will I ever eat a meal without having to feed her as well?
will I ever just say good-night to her and she puts herself to bed?
will I always have to get myself and her dressed each day?
will I always have to make sure her teeth are brushed and hair is combed?

Am I being selfish??? Yes, and I know that. But these are things that enter into my mind on days like this, these days when I feel that I am spent, that there is no more compassion left inside of me, that all of my attempts at making her life better are shattering into a million pieces, when I feel that there is no way for me to break that wall, that barrier that separates me from her own little world.

And these are the times that, once she is put to bed and I reflect on the day and how exhausted I am and how it seems that my future only holds more and more of these same days, that I remember that God gave her to me (and Michael) and that her very life is in our hands. I am then reminded that I have no time for self pity and pouty lips. I repent and ask for a special measure of grace and for the next day to be better, and if it isn't then for extra grace and love and compassion and patience. All because I know that...

There are days

They Must Really Love Her

Bailey is getting older, taller and heavier....she's simply getting bigger. And with this physical growth, her emotions and lack of controlling them also grows. We have had VBS all week, which means her routine was anything but. I was teaching a class, so I couldn't be with her the whole time.

There are ladies in our church who take on the responsibility of caring for Bailey without thought. They naturally tend to her and see that she is protected and happy. That sounds all warm and fuzzy, but it can be the total opposite. Bailey can be.. ..for a lack of a better word....difficult to deal with. She doesn't think twice about screaming if unhappy, scratching when unnerved and hitting anytime she deems necessary.

These sweet ladies patiently reprimand her (usually with no luck) and deal with her with so much love. I know that if it were me dealing with someone else's child, I wouldn't be so nice. But I watch them even when they don't know I am. They never yell at her or even sound angry. They calmly talk to her and try to appease her.

Of course, during this time she is usually just staring at them and continuing to misbehave. It seems like all of their efforts are in vain.

I never have to worry about Bailey while at church. I know that these ladies will come to her aid and are prepared to put up with her antics although she can show no signs of gratitude. I do appreciate them. And I know that

They Must Really Love Her!

Dear HEB Shopper....

Dear HEB Shopper,
I enjoy a relaxing stroll through the grocery store as much as anyone, so I feel that I must apologize for ruining your shopping experience today. I could tell from the ifsheweremychildshewouldnt

actthatway look in your eyes that my handicapped daughter was getting under your skin.
I am so sorry that I thought I could take my child into that store without being stared at with pious eyes and and having harsh judgment passed upon us as we walked down each aisle. Your body language was certainly loud and clear as I had to nearly drag Bailey down the aisle as she wailed in rebellion, scratching my arms until blood was surfacing. Her desire for lunch had overcome her ability to mind her manners. And my patience was beginning to wear thin as you seemed to be publicly stalking me to find another way to prove my inability to control my child.
Who was I to think that perhaps compassion would be applied rather than shesanunfitmother glares. I will be sure next time to choose from a wide variety of discipline: a) drug her before going b) perhaps borrow a straight jacket and dog muzzle c) or even handcuff her and staple her lips shut
These are just a few suggestions so as to not interfere with your precious trip to the grocery store next time.

Thank You

****severe sarcasm must be applied while reading!

potty episode # 7,830,220,416

We are in what I feel will be a life long training session...in other words, I do not really feel confident that Bailey will ever be potty trained. This is especially true when she makes a mess and mommy has to clean it up.

It's Wednesday, I have given her a bath (whole other rant there!) and she is squeaky clean. She is wearing her big girl panties! woohoo! I get a bath, do my hair, get dressed, etc.. About 10 minutes before we leave for church I put her shoes on her. I ask her if she needs to go potty and do the little potty sign to go along with it. She shunned me, so I figured she'd be fine until we get to church.

I am in my room and I hear Michael say, "Mama...Bailey has a surprise for you!" Which, being interpreted means, "Bailey has pooped in her big girl panties....clean it up" (now don't get all grouchy with Michael...cleaning your 8 year daughter is not the same as cleaning a baby girl...a little uncomfortable for him...although he will and has done it if I'm unavailable...he's a super daddy...)

Ugh, the first thing I think of is, "Ugh, I'm already dressed! I'm gonna get all wrinkled and plus, I'm a big girl...and big girls sweat! Now my hair will have that sweaty look to it!"

I must tell you, there is no easy way to remove poo poo panties from a child who doesn't 'think' like we do or follow directions accordingly. Long story short.....20 minutes, poop up to my elbows, poop all over her legs, all over the toilet, 372 wet wipes and a dehydratedfromsweatingprof

uselymustputonsecondlayerofdeodorant mama later, we were all cleaned up and out the door to church!

FEET

They are a funny thing, these feet we have. Feet support our weight and make us mobile. They are super cute after a fresh pedicure and horribly smelly after a day of vigorous work. They are small things that probably do not get a lot of thought, in the grand scope of things...but when you have a ones that do not work properly, they somehow begin to consume your life; taking over your thoughts, yours emotions, everything. Or at least that's what they've done to me...and they aren't even my feet.

Ten little toes, some perfectly fine and others twisted and distorted, attached to flat feet (one of which is severely turned out) support this little girl each day. Three sets of AFOs (leg braces) have been bought and used to no avail. With no communication from Bailey, we always thought the issue was more cosmetic than anything. You know, people stare at this child who limps and can't walk as fast as a toddler, who cannot run on the playground, who cannot climb the monkey bars alone, who is very unstable on anything less than level ground. But after nearly 6 years of walking (since she began at age 3), we have grown accustomed to lingering behind the rest of the crowd and taking our time to get places.

It wasn't until a few months ago that she began to grimace, to show signs that she was hurting. Never does she show signs of pain...maybe only a handful of times in her life...she has such an extremely high tolerance for pain. Now, every time she stands, she makes horrible faces and groans and whines. The pain must catch her by surprise, because she immediately reaches to grasp anything in reach for stability and looks so scared. We stand there waiting, whether in a busy restaurant, waiting room, parking lot, where ever, for her to be able to get her footing and walk. Now trips that were twice as long because of her disabilities, now they seem three times as long.

She finally gains the ability to walk and feels partially confident with doing so. Holding her arms for stability, she walks as if walking on glass, short quick steps that seems to shoot fiery pains through her feet and up her legs.

Applications have been filled out to go to a specialist, but who knows when we will hear back from that. Each day grows worse. I really wish she could just tell me exactly what she's feeling. Does it sting? Do they tingle? Is it constant? Do they throb? Who knows?

The Lord does, I am sure of that! All I can do is pray that His will be done. Whether that means healing her Himself...which is more than able to do, or allowing us the help we need from a specialist, I will be sure to give all glory to Him!

Big Sister Shelby

At only 11 years old, Shelby Grace Wiggins is a better mother than most women with children of their own. Having her own childhood shortened in order to help 'tend' to her baby sister, Shelby has grown up quickly and has had to mature at a fast pace. I do not see this as a bad thing, mind you, as I know that this 'practice' will help mold her into a wonderful mommy for real one day.

These early life lessons in feeding, changing, bathing, dressing, etc. has somewhat aged my firstborn. There was a short span of time that she seemed to be getting a little resentful of the circumstances dealt her. But those feelings are gone now. She simply accepts her role as mini-mom and goes about the business that title holds with no argument at all.

For instance, this past Sunday I laid down on the couch. Michael was resting in his recliner and Brody was watching TV. I kinda sorta maybe fell asleep....but it was one of those sleeps where you can still hear what is going on around you. I suppose that Shelby must have seen that I was napping, and so she stepped in as mommy for about an hour, without thought, like it just came naturally to her. "Come on Bailey, let's go get a nap. I will lay with you." I could hear her talking to Bailey. Through my in and out state of sleep I heard Shelby in there talking so sweet to Bailey. Bailey LOVES music, so Shelby took her IPOD in there and let her listen. I could hear Shelby singing to her and clapping with her.

I remember thinking how blessed I am to have a daughter as special as Shelby. I thought of how Shelby always has Bailey's best interest at heart. Upon waking up, Shelby says, "Ok, I took her potty and she went. And I've already brushed her hair and teeth. So she's good to go."

What an amazing, compassionate, self motivated young lady she is. Because of her love for Bailey and willingness to be a help to her own mom, she went the extra mile. I cannot brag enough on her. God has been so good to me. I am so very thankful that I have Shelby, but I am more thankful that He has placed in her a sweet spirit and an unconditional love for her sister.

I Wonder

When you wake up with that cheesy grin every morning, I wonder if you really are that excited that I am the first person you see each day.

When you are watching Barney, I wonder if that 2000 time repeated episode is like new to you each time you watch it.

When I brush your hair, I wonder if it really hurts or if you just scream because you don't like to be touched.

When you eat your cereal, I wonder which kind you would choose if you could talk.

When you go potty, I wonder if you really grasp what a big girl you have become.

When we try to mess with your feet, I wonder how much pain you are truly in with those twisted toes and crooked foot.

When you get in trouble, I wonder if you really understand why.

When you are chewing your favorite gum, I wonder why it has such a calming effect on you.

When I look you in the eyes, I wonder what you would say to me if you could talk.

When you are fussy, I wonder if maybe you have a belly ache or a headache that goes untreated.

When you laugh, I wonder if you know how much joy is spread like wild fire.

When you hold my hand, I wonder if it's because there is such a great connection between us.

When you fall asleep, I wonder what kind of dreams you have.

When you are in therapy, I wonder if you know what it's really all about.

When you are shuffling cards, I wonder what thoughts are going through your mind.

When you watch other kids play, I wonder if you are wishing you could do that too.

When Shelby and Brody ride their bikes, I wonder if you would like to join them.

When others make fun of you, I wonder if you grasp what is really going on.

I wonder

We walk in and you are 'talking'. And very loudly, might I add. I watch as Shelby and then Brody pass by the others in the waiting room. Eyes take a glance then they are back to the magazine that they are reading.....until you walk by.

That's when they forget how rude they are to stare, how much I'd like to walk over and attack....I mean pray with them. These strangers seem curious, bewildered, uneasy. 

I check you in at the front desk and you begin to wonder toward them....as you always do. They do not know that I am watching, that I see every shifty eye movement, the look of panic on their faces like you have leprosy or something.

Shelby tries to call you back to the other sitting area, but you love people...love to make connections with them...love to smile at them...love to blow zerberts in the air in an attempt to get their attention. Well, you have it alright. Their undivided, yet fearful attention.

Like a very strong magnet, they are unable to keep their judgmental eyes off of you. None of them offer a 'hello', so what then are they thinking? Are they scared for their lives to try to talk to you, not knowing what to do with a nonverbal yet vocal child with a slight limp. 

Are they thinking, 'what in the world is wrong with her?' or 'so glad my kid isn't like that'. Some even have a look of disgust, as if they can't believe they have to share a room with someone with disabilities.

And what gets me is that they don't even care that they are doing this. That their body language is that of discomfort. Shelby can see that some are staring. She, who loves you in all of your insufficiencies; your inability to run, talk, play house, read, bathe, skip, or a number of other things, gets fiery mad when others offer that look of disdain from their thrones of superiority. She doesn't mind giving them a 'certain' look in return. Although I have had to 'hold her back' at times, I am proud that she defends you and loves you so.

They are just strangers, they are uneducated, they are ignorant to it all.

There's no need to argue, strangers just don't understand.

bailey got a haircut today.  to date, she has only had 4 haircuts...ever!  she hates for her head to be touched, so we usually let her grow it to Rapunzel length before cutting it!  well, it was getting there, so we had it chopped off today.  never has it been this short...i was really nervous.  it is longer on one side, but i hope to have it fixed next week.  she did ok...daddy stayed with her the whole time.  she does better for him than me.  she cried a lot.

bailey playing ball

diagnosis

Diagnose: to determine the identity of (a disease, illness, etc.) by a Medical examination
Dianosis: the art or act of identifying a disease from its signs and symptoms


There is one thing that I have longed for ever since I knew that Bailey was different....a dianosis. It seemed that this was not so much to ask for, doctors diagnose people every day, no big deal. But who knew that 8 years later, I would be no closer to a diagnosis?

I guess the first doctor simply mentioned PDD (pervasive developmental disorder) in passing. He didn't really tell us what it was or how to treat it. What did this mean? I was certainly not happy with this diagnosis, or lack of one.

Then the second doctor told me that she had autism....or was in the autism spectrum (which is another way of saying, 'we really don't know what's going on with your daughter")

I've had others say, "no, she's not autistic....look at what great eye contact she makes and she's so affectionate." or "she doesn't really excel at anything, therefore she's not autistic."

i've even had a lady who seemed smarter than me, i mean, i AM just a mom; tell me that she was MR (mentally retarded) this was after an iep meeting at school and the psychologist decided to do some 'testing' on bailey. funny how this testing didn't involve bailey at all. in fact, it was just me and this lady in the room. she pulls out a paper, a test, of sorts. she begins to ask me questions about bailey, like a multiple choice quiz or something. when all was said and done, bailey didn't score well enough to be autistic. how bad is that, that my daughter couldn't even score a good grade on the 'are you strange enough to be autistic according to the stupid questions i'm asking' test.

i remember looking at her for the answer then. what is she if she's not autistic? PDD is a huge umbrella of things, but so is autism. she, in her 'oh so educated yet trying to be sympathetic' way of looking at me lowered her voice and said, "so will you agree with me that she will be labeled MR?" i don't even remember what i told her at that point. MR? seriously?!

i don't buy that at all. if you pull her chart at school, that is the label you will find. MR. but i can't and will not agree with that. on her next doctor visit, (neurologist #5) i told her that i would really like a diagnosis because it gets very old when people ask what is wrong with bailey for me to answer, "Uhhhh, i don't know." well, the response from her doctor was this....again with the super 'i'm trying empathize with you' eyes, "well, there are just some things we cannot diagnose. sometimes we just don't know."

what?! i'm paying you a jabillion dollars that i don't have for you to tell me you don't know either?

so here we are, my little misfit, undiagnosed, not quirky enough to be autistic, but slow enough to be MR, and delayed enough to be PPD daughter and us....without a clear concise diagnosis.

so what do we say now when people ask? well, michael and i have decided that no one, not the doctors or the psychologists or school or anyone, knows bailey dyan wiggins better than we do. and we believe she IS autistic. maybe it's not full blown autism, maybe she does have some MR mixed in with all of it, but in our heart of hearts, we feel that she truly is in the autism spectrum. therefore, if you ask me what is wrong with bailey....other than first saying, "There is nothing WRONG with her." i will tell you that she is autistic.

after all, no matter what label is placed upon my precious angel, it does not change who she is or how she is treated.

Forgiven by an angel

Last night you were being contrary.  I, like a child, reacted in anger.  I was mean and hateful to you.  I even  raised my voice a few times.  It was like a pressure cooker that exploded and made a mess all over the kitchen.  You refused to listen or to cooperate as I tried to clean you.  I got so frustrated at having to deal with giving directions to a child who probably doesn't understand half of what I was saying.

I sent you straight to bed, needing a few moments of peace before my own bedtime.  But peace didn't come.  I was regretful.  I was so mad at myself for letting you down.  All I could think of as I lay there in the bed was your little sad eyes before putting you in bed.  Your look of confusion.....maybe because you didn't understand why my tone was so angry or maybe because you didn't understand why mommy was being so mean.  Either way, those thoughts were planted in my mind all night.

Then this morning, I walked in to wake you up, so excited to see you.  And as I opened the door, you lifted your head slightly from the pillow and grinned at me.  I stood you up, wondering if all was 'ok' with us.  You immediately grabbed me around the neck and hung on.  Warmth and love spread through me completely.  I do not know if you had forgiven me or if you even remembered the events from last night.  All I know is that you have an unconditional love for me that is unimaginable.  You held on to me like you hadn't seen me in weeks, although it had only been a few short night hours.

I asked the Lord to forgive me before waking you this morning, and I made sure to ask you to as well.  I know I am sure to fail you again, as I am human.  But with the Lord's help, I will not raise my voice like that to you again.  I will not allow my flesh, my stress, my impatience to get the best of me in those trying situations again.  I love you so very much and I am so glad that you love me too....

Hi everyone!  I created a Facebook page for Miss Bailey and imported this blog onto it.  So, feel free to look it up on FB and join!  

http://www.facebook.com/pages/ForBaileysSake/117074614977659

just a quick story for today....

Bailey wakes around 6:45 this morning...nothing unusual.  I go in and help her off the bed, at which point i stuck my hand in something wet.  hmmm, must have peed through last night.  no biggie.

Then I turn on the light and Brody walks in.  "It stinks in here,"  he announces.  My nose was a lil stuffy so I didn't smell a thing.  As I put two and two together, I thought I may better check the wet spot.  Poop!  Shoulda known!  Her shirt is covered in it....too bad I didn't realize it was poop until after I haphazardly yanked it off her.....getting poop all over her side and back and hair and face!  The bed is covered in it.  The outside of her pull up is even covered in it!

Nothing like giving grouch-o a bath at 7AM to start the day off right! 

Other than talking, there have been three major prayer requests concerning Bailey that we have longed to see answered: 1.  that she could be potty trained   2.  that she would sleep thru the night all alone in her room   3.  that she could feed herself using utensils.

We have prayed earnestly for these things to take place.   She will be nine in August and I am glad to say that progress is finally being made toward these major goals. 

First, potty training has been something that has seemed impossible at times.  And believe me, changing soiled pull ups or changing soiled panties on an 8 year old gets quite tiresome.  Well, thanks to the wonderful people who work with her every day at school, I think we nearly have this potty thing whooped!  They gave us a 'potty button'.  It is a button with a picture of a potty on it.  When she pushes the button, it says, "potty".  At first, we would tell her that she was going potty, then walk her over to the button and tell her to push it, sometimes even having to physically make her push it.  Then we would proceed to the bathroom.  Well, now when we ask her if she needs to go potty, she just walks right over to the button and pushes it on her own!  There have been a few times that she has walked over and pushed it without our initiation!  Amazing!  Just think, this is Bailey's way of communicating with us!  We may never hear our sweet girl tell us that she needs to go potty, but because of this button, she has a way of letting us know!  I am overjoyed at this milestone!  She generally stays dry now....if there is an accident, it is usually because of our neglect.

Next, the sleep issue has been a huge one in this household for nearly nine years now.  I really do not think there is any way of describing what it has been like for all of us.  I won't even try.  But ever since Shelby went to Florida for a visit, Bailey has been on her own at night.  I know for a fact that this is a direct answer to prayer and I thank God for it every morning when I wake up!  I know that there are many people who have been praying with us concerning this.  I certainly appreciate all of those prayers.  God has been so good to us...right when we (or at least I) was to the point that I knew she would have to always be sleeping with someone, He passes by at the right time!  Praise the Lord.  Anyway, every night now she kisses her daddy good-night.  I walk her to her room and help her lift her leg onto the bed, then she uses my body to push against, getting the rest of her body on the bed.  She then fumbles around and gets up to the pillow.  She lays down so sweetly and brings her little hand right up to her face with her blanket in tow.  Precious.  She doesn't move or even make a sound when I tell her good-night and I turn off her light and walk out.  She sleeps all night long.  Honestly, when I just sit and think about it, I weep.  To think that there were so many sleepless nights, no many frustrating moments......yet God has delivered my daughter from her sleeplessness and has finally given her rest!

Also, we are making great progress with her feeding herself.  We aren't all the way there yet, but she's doing much better.  I know that in time, she will be able to sit and eat a meal completely by herself with no help at all.  I know that God can do that for her!

So much to be thankful for.  Nothing to be taken lightly or taken for granted.  I find my heart is full of gratitude for what my Lord has and is doing in the life of my challenged daughter!

To date, Bailey has lost 13 teeth....or at least I think she has.  That's as many as I can count before she clamps down on my finger like an alligator and begins the death roll.  Of those 13, only 4 have actually been pulled by me.  The rest have been swallowed, fallen out while eating, and who knows how else they have been disposed of.

The 13th came out this morning.  I brushed Bailey's teeth, which in itself is an olympic sport, and cleaned her mouth out as good as possible....since rinse and spit are out of the option.  Then she kept grabbing at her mouth, like when you have a hair in your mouth but can't find it.  Then she did the cat with a fur ball gag, at which point she successfully reached in pulled something out and threw it on the ground, then commenced to watching Barney as if nothing had happened.  What in the world is that?  A tooth!  GEEZ!  Hmmm....I wonder which one it was?  So I bravely go fishing around in her mouth....at which point I broke out into a small sweat just around the brow line.  A few bites and prying of the jaws later I saw the newest empty spot.....but what is this?  Another loose tooth right beside it?  AHA!  I have found one!  Maybe I can actually pull this one out myself!

She reluctantly lets me in for brief periods of time.  I can feel it just hanging on.  Finally I get a fairly good grip on the thing and I knew that I only had this one golden opportunity to pull.  This was my chance, my moment!  YANK!  The result?  Enormous, geyser amounts of blood pooling in her little mouth and dripping onto the carpet below.  No tooth, that dumb thing was connected on one side.....and connected well I might add.  Ugh!  It's not like you can say, 'Bailey, put this towel in your mouth to stop the bleeding then go to the bathroom and spit out the blood and then rinse your mouth out really good.'  No, it was more like, 'Brody, bring me that sock....hurry.  Now go get the wet wipes.'  A sock?  Yes, it was the closest thing at the moment.  Beggers can't be choosers.

After 3 pints of blood and a very pale Bailey, (jk, grandmothers) I got her all cleaned up and off to school, where for the next 7 hours they will be on tooth duty.  I am sure it will fall out at breakfast or lunch, without Bailey ever knowing that it's missing, or even caring that it is.

I'm telling you, this house is ever full of stories, dilemmas, emotional breakdowns, uncontrollable laughter....but always love!  Have a great day all!

Today Bailey's life skills class went on a field trip to Colbert Ranch in Bertram.  Shelby and I went along....after all, the class is only 4 students large.  I was glad to see that the principal also joined us!  So off we went.  Bailey's teacher bought them all cowboy hats (pink ones for the girls), but of course Bailey was gonna have no part of that!  She did, as they all did, agree to wear the bandana, though.

I went along to watch the kids have a great time, but I left having had a blast myself.  I was amazed at how much they enjoyed touching and riding the horses.  Bailey was the only one who did not want any part of it....although she did ride....reluctantly.  Bailey was actually the only one who really didn't seem interested in any of the events.  She certainly didn't enjoy the small hike.  She hates to walk on any uneven ground...and this was most definitely not even ground.  She was pooped...and so was the aid who was helping her out most of the way.

I took lots of pictures and video, but because I do not have parental permission, I could only upload the stuff of Bailey....but I wish you could've seen the looks on the kids' faces while riding the horses and while throwing rocks in the creek.  Shear joy is what it was!  Innocent, clear, unrestrained, pure joy!

Why is this video so important?  Well, only because my Bailey, who is about to be 9 years old, has just in the past 6 months started feeding herself with a utensil with more going into her mouth than on her clothes or on the floor!  Happy Day

Easter Party At School

Brody's kindergarten Easter Party consisted of:

18 hyper 5 year olds running out to grab up as many eggs as possible.....taking all of about 74 seconds total

Bailey's Life Skills Class Easter Party consisted of:

Anthony throwing a fit all the way to the grass

Ian picking up eggs and opening them to see what's inside before committing to keeping it.  Upon realizing the real eggs didn't open as easily, he simply dropped them back to the ground and commenced to stomping on them.

Bailey picking up eggs, trash, leaves, grass, anything that wasn't connected to the earth and throwing it across the lawn.

Total time:  about 10 minutes for just the 3 of them!

Had a blast.  Needless to say, Bailey's class was much more fun to watch. 

Once inside, Ian immediately opened every egg and began stuffing himself with the sugary sweets. 

Anthony only wanted pretzels.....and Brody's capri sun

Bailey was just like 'whatever'

Geez....someone should get me for not posting in so long!  I guess I let life get in the way of blogging...go figure.

I haven't told you yet about Bailey's meds.  Well, up until last May, Bailey was on a few different meds.  She took Keppra for epilepsy and Seroquel.  Why up until last May?  Glad you asked...

When Bailey began receiving Early Intervention, the case worker suggested we look into SSI for her so that she would be automatically qualified for Medicaid.  That was such a blessing.  We were approved and so she received Medicaid benefits.  This was a big deal because we were constantly at the doctor's office, ER, hospital for various tests, PT/OT/Speech, AFO fittings, etc.  Not to mention the fact that she received all of her medications through medicaid.

Once we moved to Texas, we tried switching her over to Texas medicaid.  Of course we had to inform them of the new salary that my husband was receiving.  Well, needless to say, for the first time ever, SSI informed us that we made too much for SSI or medicaid.  What?!  Now let me rant for just a moment concerning the SSI portion.  No, we did not need that money every month...although it did come in handy to buy her pull ups!  But we needed the SSI to receive the medicaid.  What I am furious about is that approval for Bailey's SSI is based on my husband's salary.  I do not agree with this at all.  We thought about taking a pay cut for her to be put back on, but then we realized that for the rest of his life, my husband would never be able to receive a pay raise because then we would lose it again.  I believe that SSI should be based on Bailey's disability.  How much my husband brings home doesn't change the fact that Bailey is disabled and always will be.

Rant over before I say something I shouldn't!  Anyway, since my husband is a pastor, we do not have group insurance.  So, once her medication ran out, we didn't know what to do.  There was no way we could afford it every month. 

Now I know that before I go any further, I am gonna receive judgement from some about what we decided.  But we are bible believing Christians 100%.  So, one night my husband was preaching about faith.  How we have faith to trust Christ with our souls, but not with day to day dealings.  WOW!  He went on to talk about how many people are on antidepressants when really they need Christ, etc.  He did, though, say that he knew God put doctors/medication on earth to help us.  But that many times it is abused.  True.  So, later we talked about Bailey and how that this was our opportunity to trust Christ with Bailey's  conditions 100%.  That's right, up to that point, I realized that I had never placed the situation completely in His hands.  Of course I had prayed many times to help her and to make things better...but I never had just prayed and asked God to heal her and just place it all in His hands.  What conviction filled my soul.

So, once the meds ran out, we did not seek to refill them.  I was nervous at first.  What if it throws her into some crazy seizure and does major damage.  Well, we prayed in faith, believing God would take care of her.  Well, I am so glad to say that she has only improved since taking her off the meds!  Her personality is friendlier, not as violent.  Her sleeping has improved.  As far as seizures go, nothing has changed.  Even when she was on the Keppra, she still had small episodes once in a while.  Well, she still does, but they aren't bad at all.  Very mild.  So for nearly a year, Bailey has been medicine free!

We praise God for this.  What, you may ask, would we have done if the whole thing had backfired?  Well, we would have still praised God for showing us that we do need medication for her.  But we do believe whole heartedly that God honors when we put complete faith in Him and demonstrate that faith!  We believe he rewards us for trusting Him.  He also tells us that He will give us the desires of our hearts.  And believe me, our desire was that Bailey would not be stuck on medication for the rest of her life!

Will there ever come a time that she has to be put back on meds?  I don't know.  Maybe.  But either way, we will trust God and always be sure to give Him the honor and glory that He deserves.

(March 2009)

Living with a special needs child can be quite challenging. There are things that we deal with that no one else can understand or relate to. And then again, I realize that we are blessed; there are many who cannot have children or have children who have far worse problems than Bailey. And believe me, I am a happy mom. I love my children with all of my heart. But I do find that by sharing here I am able to get things off of my chest. Also, I really do hope to be a help to someone out there who is struggling with the same issues.

Having said all of that, I must share with you my Sunday morning. I generally get up before everyone else so I can shower, iron and pray before church. And don't you know that Satan saw me kneeling before the Lord, asking Him to forgive me, speak to my heart, be with the pastor, etc. Therefore, he immediately began causing mischief in the Wiggins household.

I get Bailey up; only she's not ready to get up. So I have to grab her by the ankles and drag her to the end of the bed so that I can then grab her under the arms like you would an infant and sit her up. She's limp....on purpose....doesn't help me at all. Once I have stood her up (& I'm out of breath) I turn to walk out the door. Two steps away, I turn around and she's standing against the wall; her face flat on the wall. "Come on Bailey, let's get dressed for church" I continue walking to the living room. And she begins her usual, "Maaa Maaaaa". This is chanted repeatedly to no avail and gets louder and louder. I finally get her to the living room.

She's already wet, so I get a pull up and wet wipes and rip the side of the pull up. As soon as she's free, she walks off to the TV (to listen to music) She refuses to come to me. I grab her arm and pull her over to me. "Step in", I tell her. She lets her body go limp again....in total rebellion. (she may not know much, but she knows defiance!) I try to lift her leg myself and she's hollering at me and trying to scratch me. It looks like a cat & dog fighting...seriously! Once again, I am out of breath.

Next comes clothes. After another bout in what seems like the WWF, she's dressed. Now the hard part (as if all the rest of this hasn't been crazy hard) brushing of the teeth and hair. While she is involved in her DVD, I slip up behind her...very quiet like...easy now...easy..........& 'pounce', like a leopard I charge! I'm in....brush quickly...get in...get out. There's toothpaste everywhere (she doesn't know how to spit) she's grabbing my hands and stomping my feet with her shoes. And of course....limp again. Oh My Soul! This child is out to get me today.

One thing left, hair. Once she has settled down and is once again into the music, I make a second approach...my freshly washed/dried hair is now damp around the edges from me sweating up a storm....ok, I can do it....and 'attack'! Here I go. Her hair is down to her butt, so it's like brushing Rapunzel's hair! She absolutely hates for her hair to be washed or brushed. The whole time I'm brushing, she's taking her hands and pulling down what I've put up. She's spitting at me, screaming, stomping my feet, going limp, & scratching. Now we're really going at it. It takes every ounce of strength to get this hair of hers in a simple ponytail.

By the time I'm done, I'm just that....done! I have let Satan get the upper hand, again. Now I'm in a bad mood, Bailey is in a bad mood...and it's gonna spread if I don't stop it soon! But jeez, I am so tired. Tired of the same fight and battle that I have fought every day for nearly eight years. Tired of being tired. Tired of always having to do everything for her. Tired of letting Satan steal my joy and giving in to him every time. It was then that I thought of the song, 'O, rejoice in the Lord, He makes no mistakes; He knoweth the end of each path that I take; and when I am tried and purified, I shall come forth as gold'. What conviction. I repented immediately for the horrible thoughts that I had had toward Bailey and not only Bailey; but toward the life that the Lord has given me.

And you know what, the Lord does forgive and renews that right spirit within me. The Lord made no mistake in creating Bailey or in placing her in the Wiggins family. Again, like I've said before...don't think that because I am a preacher's wife that I do not have heartaches, bad days, hard times....if fact, sometimes I think Satan works overtime at our house!

We had a wonderful day at church...or at least I did.  I teach the 2-4 year olds and I also teach children's church.  It is such a joy to serve in my local church! 

But, there is always a story behind the scenes to tell! 

Yesterday I cleaned.  No, really, I CLEANED!  You know, that deep cleaning.  I even got on my hands and knees and scrubbed the bathroom floors!  By the end of the day I was so proud of my beautifully disinfected picture perfect home!

Bailey and I got up this morning.  I failed to take her potty right away and then got distracted finishing up my lesson.  She walked into the living room with me and sat on Michael's recliner.  Then she casually stood up and walked back out.  Chloe, the dog, went over to the recliner and started licking what looked like chocolate....only it wasn't chocolate.  You see where I'm going with this?

I call Bailey to me in the kitchen and had her turn around.  Ding, Ding, Ding...Bingo!  It was all down her legs.  So I look thru the dining room and see a doodoo trail all the way to her room.  I told Bailey to stand still, which certainly didn't work...as she commenced to march in place in a pile of poop.

UGH!  My spotless floor was now a brown poopy mess.  I must also mention that there were about 4 piles of the dirty stinky mess in her carpet....and a huge pile of it right on the edge of her bed where she had been sitting!

Oh well....at least I know that my house WAS clean....even if for only about 12 hours!

It's rude.  Really.  Rude.

I am not very old, but I do remember a time when people were more considerate of one another.  When teens had a bit of sense. A bit.

I thought Hill Street was a residential road, not a drag strip. 

I've said it once before, we live on the busiest intersection in all of Burnet county...or at least it seems that way.  And for some strange reason, every spontaneous, living-for-the-moment, 'i don't give a care', no worries teenager finds it so awesome to squeal his tires, spin out, play ridiculously loud stupid music, show off his mighty muffler, and scream wildly out the window right here at my house between the times of 10PM to midnight.

I just don't get it.  I understand that teenagers live differently.  They are strange and crazy, but I would have never been so ignorant as to do something like that.

I think I will get a neon poster and buy one of those super sized sharpie markers and write, "He who wakes her takes her".  HA! (ok, I really wouldn't want any of them to take her)

Sleep is a luxury around here.  Sleep in my own bed is an even bigger one.  And I am unwilling to give it up due to some hormone driven teenager who thinks he must exert his macho manliness on the street in front of my house. 

So please, if you happen upon this, and you are a parent of a teenager in Burnet, please recommend to them that there is a woman on the edge on the corner of Hill and Tate who will one day have had enough.

I guess I will probably never know what triggers it.  It just happens.  Out of nowhere.
Scratching.  Spitting.  Screaming.  Wailing.  Kicking.  Flailing.  Throwing.  Hitting.

Bailey can become upset for what seems to be no reason at all.  She becomes angry and there is absolutely nothing I can do about it.  She lashes out at Shelby & Brody.  They try to ignore her, but that only fuels her fire.  She will draw blood if they are not quick enough to escape her clawing.

She slings herself to the floor. And she cries.  Loudly.  Without stop. 
Snot and slobber are ever present. 

I have tried everything in my power to calm this insane show of emotion.  I attempt to be sweet.  Offering to hold her.  Burn
I tell her to stop.  Burn
I try time out.  Burn
I remove her from the situation.  Burn
I offer her cards to shuffle or juicy fruit.  Burn

Spanking wouldn't help.  She will only get worse.

Luckily this usually only happens at home or at church, not in public places.  Usually, that is.  There have been times that she has shown this open display of tantrum for the whole world to view.

There are three of me, you know?!  I have tri-polar! HA!  The GOOD, THE SAD AND THE UGLY.  Allow me to explain....

The GOOD:

-I love the way Bailey still has that 'baby' smell.

-I enjoy that fact that she says 'mama' a lot

-I love that she loves to cuddle with me

-Potty training has gotten so much better!

-Bailey has the most amazing blue eyes

-She also has an award winning smile

-Her hugs are awesome

-Bailey loves life

-She's no where near as aggressive as she used to be

-she rarely seizes anymore

-I love the smell of her hair

-She has a family who surrounds her with love and protection

-She has a church family who accepts her, not just putting up with her

-My heart melts when she wants to hold my hand

-I am well aware that God still performs miracles and that her healing could happen any day!

The SAD:

-I'm afraid that 'mama' may be as far as she ever gets verbally.  I am scared that I will never hear her speak in a complete sentence.  I want to hear her ask for juice or say "I love you". 

-I am worried that this potty training will always be just that, "training".  will she ever initiate having to go?  Will she always have to rely on my to clean her messes?  I am fearful of having a special needs woman one day who may 'go' on herself in public.

-What will her adult life be like?  Once she is grown, people will change the way they respond to her.  Right now, her flapping arms, spitting, staring, shuffling cards, meltdowns, etc are surpassed by her flaming red hair, bright blue eyes, porcelain skin, and sweet afffection.  This wont be so when she is an adult.  If seen in public flapping her arms for no apparent reason, people will avoid her, stop and go the other way, make rude comments, laugh.  I am completely frightened of that

-I break down when i watch her watching other kids play.  It is these times that I realize Bailey will never have real friends.  She will never be invited to a sleep over, never have a best friend to paint toenails with, never experience being on a team, never get picked to play with a group of kids, never have a pillow fight with a group of silly teenage girls, never marry and bare children.  So many nevers consumes me at times.  It consumes me to the point that I suffocate in it.  My chest feels heavy, my heart even heavier. 

-I dread her teenage years when she will be made fun of and the butt of many 'retard' jokes.  Although she would never be the wiser, I will know...and I will  hurt for her.

The UGLY:

-She says 'mama' 9264 times a day.....I'm sure it's at least that many times, if not more.  It's all she EVER says. EVER.  It is universal for everything from 'im hungry' to 'im mad' to 'i need help'.

-She walks up the steps in the hallway every 4.932 minutes then refuses to come down on her own thus calling us to come get her. 

-  She expects Barney to playing 24/7.  I despise that purple dinosaur....may he burn forever in eternity.

-She stands right in front of me when I am talking, thus making me unable to see the person I am talking to.

-She lashes out at people for no reason.

-In public, she will refuse to hold my hand, then refuses to walk....just standing there, eventually sitting down and assuming a lounging position on the floor of whatever store I may be in.

-I get frustrated when she poops on herself.  Cleaning an 8 year old who doesn't want to be cleaned is hard work.
-I get tired of not having down time.  Never can I not be watching, not be observing what she is doing.  It's much like having a toddler around.  Can't just assume she knows not to touch hot things, she doesn't know that.  Can't trust that she won't grab a sharp object and not know how to keep herself safe because she can't be.
-I become weary of  'tending' to her.  That's right.  It becomes very stressful.  I'm not gonna lie or make it seem like it's a joy ALL of the time.  Is it always horrible, no...remember, this is just the ugly side.

That's right...I am all three.  Sometimes I am all three every day.  Other times I may only be one of them or two of them.  They contradict one another.  They do not get along well.  But it is who I am.  I am allowed this flood of emotions and will not let anyone tell me otherwise!

bailey refuses to let me clip her nails.  I call her 'The Shredder".  Oh, but let daddy have the clippers and what a joy she is.  NO FAIR!!!!!!!!!!!!!

OK, i do not usually do this, but i found this entry made by a mother of an autistic boy on the website http://www.autismsupportnetwork.com/.  Please note, i do not know the author or anything about her personally, i only read this entry and found it described me well to some extent....minus the cocktail parties, of course! ;)  anyway, enjoy reading it, i did.

There is an ugly side to this mommy.


Sometimes, she comes out while in public places, as she anticipates strangers' reactions to her silent son, obessing whether or not someone may think he is rude, selfish, stupid.
She shows up during conversations with other mothers, as they complain about the mundane, comparing notes on achievements, professing their child's genius as they sip their overpriced nonfat lattes.
She lingers on the playground, scrutinizing the neurotypical peers surrounding her precious boy, ready to defend his honor should some snot-nosed-know-it-all make him a target of sneers and stares and "retard" jokes.
Her hands clench as the fridge door opens for the hundredth time that day, the string cheese in his hand his latest obsession. She watches as he rolls it across his chest, the tiny snack no longer edible, his interest piqued for only seconds, as he searches for something new to quench his angst.

And sometimes
she comes apart
in silence
like when
she stares at a photo
of a child
that could not possibly
belong to her
shame
precedes
denial
guilt
follows
right
behind
the little boy
with his mouth hanging open
the little boy
with the empty look in his eyes
the little boy
who reminds her of the kids she avoided
as she pranced down the halls of jr. high
THIS CANNOT BE HER LITTLE BOY!!!!
There is an ugly side to this mother.
A side that sits obediently
at cocktail parties
and
potluck dinners
But
in the wake
of a photo
that manages to capture
what she sometimes hates
what she cannot fully comprehend
what she violently fears
there is nothing polite about the thoughts that crowd her
this is not the woman
you want to invite to dinner
tonight
she gives in
to her ugly side

Read more: http://autismsupportnetwork.leveragesoftware.com/blog_post_view.aspx?BlogPostID=97aacfbb44a64a7e800ec56ab5ede2b2#ixzz0gz3onH58

Well, Shelby has been gone for two weeks now.  It's been so odd not having her around.  The trip to Florida was a needed one for her.  She is such a 'mommy' around here.  Not many 11 year olds have the maturity level that she has.  She's still just a kid, though, and this trip allowed her that freedom!

So, Bailey has been a big girl....sleeping all by herself, with the help of Barney of course!  After the other two little episodes in the middle of the night, not much else has gone on with her sleeping.  Except, that is, one other night.  Let me explain:

We had revival last week.  Any change in Bailey's usual structure or routine usually ends up in some sort of weird, possilby seizure, activity.  This was one of those times.  By Wednesday night I guess she was tired and kind of out of sorts.  She came home from school and went and laid in her bed........which she has never done before.  Later, we go to church to eat supper with Dr. House.  She doesn't eat.  She's just lethargic, falling asleep sitting up.  Rosy cheeks and whiny.  Nothing ever came of it, but I was not looking forward to her sleeping alone with the door shut that night.  So after she fell asleep, I quietly cracked open her door. 

Around 4:45AM, I am awakened by Michael, "Donya...did you know she's in here?!"  I sit up and can see the sillouhette of Bailey's head.  She's standing on Michael's side of the bed.  "She was patting me real lightly and saying, "DaDaDaDa" super quiet."  We cracked up!  What in the world?  Anybody who keeps up with Bailey's development knows that this is completely uncharacteristic of her.  This meant that she had to have uncovered herself (again), gotten herself out of the bed (again), opened the cracked door, walked up the little steps in our hallway, pushed open our bedroom door, and walked over to Michael.....and all in the dark!  Never has she done anything like this...in fact, we didn't even know she could! 

Michael said, "Great, next thing we know we will find her with the fridge open eating cheese in the middle of the night!"  hahahaha!  how funny!  This really cracked us up!

well i guess i should have explained the video just a bit before posting it! rest assure, michael is eating sunflower seeds....he does not have a dip of any tobacco product! hehehehehehehe ;)

"Umm, Mama, Bailey's throwing up!" ---Reprint May 4, 2008

You know it’s gonna be one of those days when she wakes up but never really ‘wakes’ up. She’s laying around, falling back to sleep wherever she’s laying, whether it’s on the floor, leaning on the arm of the couch, in the hallway...literally, wherever. Something’s just not right today. And you know it’s coming, not when, but you do know that it will come. The puking, splotchy skin, the jerking, the smacking lips.

So, we proceed to get ready for church....and she’s not a happy camper. Three of the youth girls stayed the night with me and we’re all running around getting dressed. Kelly has the job of bathing Bailey and washing her hair. It’s sounds like a cat fight outside that bathroom door! She’s smacking her lips like she could hurl at any moment. I tell the girls as we’re leaving, “let’s bring a towel, Bailey will probably throw up and begin seizing soon”.

So here we go down the road, cramped up in the mini van. Half way there, the second mama, Shelby, announces, “Mama, Bailey’s throwing up!” “Quick, get the towel!!” Brittany leans up with the towel and holds it under her mouth. (Anyone who spends time with us has to be ready to take the ‘mommy’ role at any moment if Bailey is around) The youth are a little grossed out....while me, Shelby & Brody are in complete control and not stressed out a bit. How Funny!

Bailey stays with me during Sunday School, waiting until just before closing prayer to puke again, with a roar of “EEWW!” from the teenagers. I sit in the back row with her during the main worship hour. Lethargic, she mostly sleeps. On the way home, more puke. All over her, the car seat, floor, and whatever was lying in the floor. (I have found that a good 80% of my time is spent cleaning puke, pee & poo from Bailey)

All afternoon she sleeps, all splotchy, seizing here and there, no drinking or eating. Around 6:30 she wants some peaches that the others are eating. Since she’s slept most of the day and seems to be in better spirits, I give her a few bites. (Remember, she’s not puking b/c of a virus or b/c she’s sick, it comes with the seizures) Around 10 PM, it’s just me and her awake. She’s sitting beside me on the couch, without warning, peachy puke comes out like she’s Linda Blair or something! Needless to say, I spent a good 30 minutes cleaning up regurgitated peaches....Yummy! I hope I’m grossing no one out, these things are so common in our house! Don’t worry, she’s fine now. These things only last a day....she was fine the next morning.

Super Big Praise

2/20/2010     Good morining everyone!  I have a huge praise to share with everyone!  This is one story I am glad to tell.  It may seem frivilous to some,  but others will be shoutin' the praise right along side me!

Background first, if I may....Bailey has never slept, at all.  I think I have talked a bit about this in earlier posts.  Anyway, for about a year now, Shelby (the best big sister EVER) has been sleeping with Bailey.  She generally still wakes during the night, but if someone is in the bed with her she will eventually go back to sleep.

Well.....Shelby is in Florida right now visiting our families.  We were so worried about her leaving because we weren't sure how Bailey would do at night.  So here is a breakdown of the last three nights...

Tuesday night, we decide to leave her Barney video on very quietly.  We put her in the bed and as soon as she realizes that no one was getting in there with her she screams.  We just shut the door and wait.  So she did scream for about 30 minutes or so.  Not too bad, but a screaming 8 year old is so much louder than a screaming infant, for sure!  Well, I forgot to put pajama pants on her.  That's a big thing when it's cold because she doesn't know how to cover herself up.  I was worried, so I sent Michael in to check on her before going to bed.  UGH!  She was poopy!  Great, now I have to wake her to change her and she will probably never go back to sleep.  So I  rouse her up as best as possible, but lucky for me, she was in a total state of confusion!  She does that a lot when she wakes froma nap.  She will start this weird laugh and will have her back all hunched over. She was drooling up a storm.  So she didn't mind at all that I was changing her. (which was super hard to do because she was laying in the bed, a bunk bed, which made it hard to clean under neath her)  She got right back into bed with only a few minutes of crying!  Around 4:30 in the morning she wakes up...which I totally expected.  And so I go to get in the bed with her.  I open her door and look down, there's Bailey.  She's all tangled in her blanket and laying on her stomach.  I have no idea how she got there.

Wednesday night, the crying was lessened.  But around 11:30, just as we were going to bed, we could hear her usual, "Come get me" moan...."MAAAAMAAAAAA"  I wish you could hear it.  She sounds like some  old lady with emphazema, real low tone and drawn out slowly.  We debated letting her cry it out, but Michael was sure that something was different and I needed to go check.  I open the door and there she stands!  She was standing at the door, which is what she does if a door is shut because she doesn't know how to open doors.  I don't even know how she managed to get herself uncovered and out of the bed; seeing that she can't do either one very easily.  I put her back in the bed and she whined for a moment then was out.

Last night, a miracle of sorts.  I put her to bed around 9:45.  I turned on the tv really low and just acted like this was the normal routine.  I helped her into bed and told her to lay down.  And guess what?  She did!  she snuggled right up and I quickly left the room and shut the door behind me, waiting to hear the screams begin......silence.  What?!  Can it be?!  Could it really happen?!  YES!  Yes it did...........for the first time in over a year, Bailey Dyan Wiggins went to bed like a big girl, all by herself and didn't make one sound about it!  WooHoo!!!!!!!  And it gets better, she slept until 7:50 this morning!  Which also means that I got to sleep until 7:50 this morning!  Praise God!

Little Battles, Big Praises!