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!