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