O, Rejoice in the Lord

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!

well, i ended up in the nursery tonight b/c bailey won't sit through services. she's crackin me up tonight. don't know if you know many children in the autism spectrum, but sometimes they do the strangest things. like right now, she's standing about 6 inches from a blank wall, looking up at it....she's totally spaced out. she's glaring at that wall like there is something there only she can see. once in a while she will call out "mama" which is not to call me, but is the one word she knows best. she'll do this at home as well, but with other things....like doorknobs, the rug, a single playing card. she'll be unaware that anyone else is around....in baileyland. while she stares, she is also stimming.....flapping her arms or touching her fingers together repetitively or shaking her head or doing this crazy lip thing she does. anyway, thought i'd share yet another baileyism with all of you.

So, Bailey is 7 and we are working on potty training. easier said than done. she does well as long as we take her about once an hour. i'll tell you what, we're going through way too many pull ups. Anyway, i put her in the tub last night....being sure to put her on the pot first. she just sits there with her big cheesy grin and does.....nothing. no poop or pee. so i feel confident that i can put her into the tub. so i fill it with lots of water and bubbles.
shelby passes by and says, i'll get in with her to keep her happy. so shelby gets in and they play for a bit. so i leave and go do some laundry. then i hear the infamous words, "Mama, bailey pooped in the tub!" Shelby goes running from that bathroom to ours and jumps in the shower.....groaning and moaning about being pooped on.
i walk into the bathroom and there sits bailey in the tub surrounded by 'floaters'....ok, i won't go into details....you all know the scene. this was cuter when she was an infant, but when you're dealing with a 7 year old autistic child who is a little chunky, it's not so cute any more.
you know, the words, "stand up" "sit down" "bend over" "lift your leg" etc. are to no effect with her. by the time i finish cleaning her and the tub, i am soaking wet, with more soap and bubbles on me than on her or the tub.
so i thought i'd share another adventure in bailey land with all of you. have a great day!

REPRINT from June 11, 2008- "You're Invited"

I have all we need: confetti, party hats, shiny streamers, a cake & metallic balloons. The occasion? Reading my other blog entry sent me into a little pity party! I know, I should not let things weigh me down, but I'll be the first to admit that although you try to serve God with all faith and joy, sometimes situations can bring you down. Yes, I know it's wrong; but I think that if I jest get all of this off my chest I'll feel better. Besides, it's not really me that I feel sorry for; it's Bailey. And honestly, I think sharing my heart will help others who have a child like Bailey.

As I was in that 'other' situation in the other blog entry, I couldn't help but notice some things. There were a couple of 2 year olds, a 3 year old, a 4 year old and that 6 year old. Bailey is the oldest one in the room. They were all playing; doing things normal kids do: playing pretend with the baby dolls, building with legos, getting up and down from the table, talking to one another, sitting down and standing up, getting on and off the car. What's wrong with this picture? Nothing, except it's all things that Bailey could not be included in because she is unable to do these things. Although she's right there with them, taking in every action & observing every detail, she's still an outsider. She can't say, "wanna play house?" or "let's play duck duck goose" (she doesn't even know what those things are) Does she even realize this? I don't know. I don't think so. She probably things she's just as normal as everyone else there. Although sometimes she does have that look on her face as if to say, I wish I could do all of that, too". It makes me so sad for her.
She's missing out on so many things...little things that we take for granted. Even right this moment, she's watching Brody put on his spiderman outfit and jump around saying "I'm Spiderman!" He's jumping around with ease, saying and doing whatever he wants with no problems. (as if she knows what I'm doing, she just came over, mouth wide open, and gave me a kiss)
Would I change her if possible? I would change the fact that she doesn't speak and I would change the fact that her motor skills are undeveloped. But I would never change the person she is. She has a wonderful personality, even if the outside world never sees it. She is appreciated, loved and wanted. So, OK, party over. Now that wasn't too bad was it? If just needed to explain some of the heartache I have from now and then. Thanks for listening!

You Won't Like Me When I'm Angry! REPRINT FROM June 11, 2008

I recently found myself in a weird situation. Having Bailey with us is having the out of ordinary as the norm. The strange quirks she has are daily life to everyone in our family. We are used to adults asking us about her or commenting on her limp when she walks, etc. But really, she has led a sheltered life. She’s always with people who love her and she attends a school where everyone else is just like her. But she’s almost 7 years old and we’re about to encounter her peers.
The situation was this, I was in a room with some toddlers and one 6 year old. Of course, Bailey was with me. She began her usual routine of staring at the 6 year old and following her around (her way of ‘making friends’) She would laugh at everything she did. The little just looked at her blankly. “She’s keeps staring at me!” the little girl said. “She likes you,” I responded. Then I noticed that the little girl was avoiding Bailey. She would walk to the other side of the room to get away from her or turn her back to her.
I’m sorry, but the “Hulk” inside of me began to get a little angry with this child who was treating my Bailey so awful. It’s then that I accepted that this is the reality of Bailey’s life. It is a challenge that will only become worse as she gets older and is around other ‘normal’ children. It is a fact that we have to deal with, the ‘weird’ kids are usually shunned and not very popular. That scares me to death, to think of people ever treating her badly or giving her the cold shoulder or teasing her. It is worry that any mother would have. We want our children to be accepted and have lots of friends. Although I know God is in control, I also know that that fact doesn’t mean there won’t be heartaches or sticky situations with Bailey.
Please pray for me that I won’t ever lose my temper with others who don’t know quite how to deal with Bailey. I understand that most of the reactions come from being ignorant of her condition. I don’t think that most people would want to be mean, it is usually the reaction when you don’t understand something.

Delights Thru Disabilities - REPRINT April 2008

On traveling.....Whether in the van, restaurant, hotel, church or wherever...she is bent on showing her not so sweet side. Here's the lowdown on most of the services that Bailey attends. She does well during song service and special singing. (needless to say, she thrives on music) Then anytime there is prayer...you know...the most quiet time of a service, Bailey lets out a huge BBBUUURRRPPP!!! No big deal to her, it's just a normal bodily function....but oh how I wish I could just crawl under all of the pews and slip out the back door as if I'd never been there. But that's not all. Michael will get up to preach. Bailey doesn't understand that it's a time to be quiet. I used to always have an arsenal of things to distract her. I have a few business cards, pictures, about 1,932 (maybe not that many) pieces of Juicy Fruit (she's addicted) and little things. Well, all of that works.....for about all of 10 minutes.

So now she decides that she's not really wanting to sit in the pew, she wants to get up and walk around. AH! What am I to do? I could get up with her (from the 2nd row) but she'll scream when I grab her hand. Again, now would be a great time for disappearing cream! By the end of the service, I feel as though I've run a marathon. Bailey and I are both in bad moods.
*Back at the hotel* We're getting our PJs on. Bailey is given her meds. We get settled in. Shelby is sleeping with Bailey and does okay.
*Next night* We decide to sit on the back row; at least I'll be the only one distracted this time. And of course, it's the one night that she's falls asleep during service and causes no trouble at all.
*Later in hotel* Bailey is given her meds, we get settled in, PJs are on; but Bailey decides that she doesn't want to sleep. She's crying, Shelby's made, I'm frustrated. So the decision is made for us to play musical beds. I get into the bed with Bailey....which is what she wanted. By this night, I've had all I can take. I'm tired with the pressures of dealing with a special needs child. So here we are, lying in bed together. We are facing one another. She's so sleepy, but just can't give it up. She bats her eyes slowly, each blink showing more exhaustion. She's staring straight at me with silent, helpless eyes as if to say, "Mama, I'm sorry that I cant express what I fee., want or need in the way you'd like; I don't wish to be this way and I do the best I can."
What a humbling experience. As a parent, I realize that I'm (me and michael, actually) all she has. It's my job to 'know'. It's my job to make the special world she lives in a happy, calm and comfortable place. It's in those quiet times with her that I realize that regardless of the inconveniences her disabilities bring, I wouldn't trade her for a 'normal' child any day!

Successful Trip to the Hospital

OK, so we went to the hospital for Bailey to spend the morning in day surgery for an MRI. Background....a couple of weeks ago we took her for an MRI but was unable to get it done b/c she wouldn't go to sleep with oral medications. We tried to tell them that she doesn't go to sleep very easily, but what do we know? who do we think we are......her parents?!
So, we've been up since about 4:15 this morning. I still get so cracked up watching other people try to interact with Baily as if she's normal....even those who are suppose to be professionals and know all about her condition. In comes some young apprentice girl with a bag of 'tricks'. She wants to familiarize Bailey with whats going to be happening to her.
"Hi Bailey. Let's look at this mask. You'll have one just like it that will give you the sleepy medicine. Do you want to hold it?" Bailey grabs it and throws it down. "Maybe we can look at these pictures of other kids who have had the same procedure. See, he has his mom with him, too!" As this girl is steadfast in trying to show Bailey the pictures, Bailey is flipping all the pages and then grabs the book and guess what....throws it down. "Okay then, look at this baby doll. She has some tape on her arm. You will, too" And then there goes the baby doll onto the floor. This girl shows signs of fatigue and is on the line of polite frustration. Like a warrior, she continues handing things to Bailey and Bailey keeps throwing them down. I just sit back, say nothing and watch the show.
Anyway, everything went fine and we'll know results in a few days.

Pukin' Peaches

"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.