Sunday, April 22, 2007

YOU'RE STILL YOU


If I had made daily postings about things going on in my house last week - I most certainly would have driven you all away in fear of my going completely, and utterly insane. It would've been like watching a horrible car accident in slow motion. I certainly feel like I've gone through a windshield a few times in the last few days.

Kierra had a bad week last week. I want you to appreciate my definition of "bad". Getting a hangnail; that's an inconvenience. Having your eyelid catch on a rusty nail; troublesome. Bad defines watching things going totally out of control and you can't really control the situation. Basically it seems like Kierra has been on a downward spiral of regression. We are having a hell of a time figuring out what exactly is triggering it. My best guess is her aide at school has recently gone on maternity leave, and basically this has disrupted everything she is used to. She was really close to her aide.

Kierra has been reverted to things we had overcome MONTHS ago. Simple things like wearing a jacket, combing her hair, and wearing different clothes. She's only wanting to wear one shirt, and keeps it hidden under her bed at night. She's also peeing all over the house. She's potty-trained yet yesterday she peed three times on the carpet in the play room, and made a delightful mess in the bedroom after bedtime. You can imagine our utter horror coming home to hearing this from our babysitter. How much to you compensate someone for having to deal with that??? So much for nice ending to romantic date. I spent it trying to get crap off the carpet. The next day, she proceeded to pee on the carpet (this is the yelling I was woken up to this morning), and she also peed on my mat in front of the kitchen sink. The craziest part? She takes off her pants and undies, peees, then goes to sit on the toilet. It's mind boggling - why would you go through all that trouble when the toilet was actually closer to you? I won't even go into the marathon tantrums she's been having. Let's just say I've spent a lot of time on the phone long distance to my mom, trying to calm me down. It's a good thing I'm not a drinker. I would've been on a weeklong bender.

I understand she's not doing these things to be a bad kid. She's just reacting to having a monkey wrench thrown into her life. Autistic children usually don't bode well with change - especially unexplainable ones. She doesn't understand why her aide is gone, even though we've explained it to her. I actually emailed our child psychologist over the week-end for help. We could use all the help we can get!!
In spite of a bad bout of broncittis, she's meeting with me on Thursday (remind me to wear a surgical mask).

The worst part about this past week is it has made me and hubby feel at a total loss. It is very hard to see your child overcome so many obstacles that you've fought long and hard to overcome. And then in a few days it seems like all of it was for absolutely nothing. It's frustrating, but more disheartening. It sucks to feel so much impatience towards your child: because there really is no outlet to direct your anger towards. Both of us have had long faces today. It also sucks because when we get into these bouts, we wonder at what point does all the progress dwindle down and we are faced with the cold, harsh reality of what Kierra's limitations are? Me I'm someone that refuses to take no for an answer (ask my husband). But I know at some point, there are going to be challenges that will be lifelong for her. So why are we re-fighting the ones we've overcome?

Later in the afternoon, I was cuddling with her on the couch. We were just looking into each others faces, and she was smiling her gorgeous smile. My child has the most heart-warming smile. All my upset just melts away. Amazing isn't it? How days of chaos can be overturned so quickly? She stroked my face lovingly, said "mum mum" a few times. It makes me realize that even in days where I feel our whole family is going to hell in a handbasket, that the love is always there. That remains our constant. My love and devotion to her is constant. I know there will be better days ahead. But just looking and her, and holding her to me and knowing she was probably the happiest she's been in days; where she was at that moment... I had to whisper in that crazy head of hair "You're still you, and I love you forever."

16 comments:

Burg said...

You're in my prayers, Elle.

nancy said...

I wish I knew what to say...but it's nice to read that you are her hero, and she is yours.

Janis said...

Awww Elle. I wish I knew you were having such a bad weekend I would have called you!! I know I can't fully relate but I know what a bad day is here and I know the feeling well. It's been bad here too. Carys is testing all kinds of boundries and yesterday I actually put a bar of soap in her mouth..yes....that actually happened @@

We need to get together and unwind girl...whatcha doing say July? :D

You guys are awesome parents and Kierra knows it. She just likes to mess with ya every once and awhile. Gotta love that spirit!!

tulipmom said...

I understand what you're going through. I'm so sorry you've had such a horrendous week. I hope this week is a little better.

Lene said...

I hope that this week is better. Your comments at the end about looking into her eyes and all of that frustration goes away - I am with you on that. My son has moments where I would like to toss him out the window (ok, not really, but you get the idea), and all of that frustration goes away as soon as he hugs or kisses me...or even just smiles that sweet smile.

We are here for you!

Janet a.k.a. "Wonder Mom" said...

Know what?

That was a wonderful post.


Wanna know why? I understand all of your frustration, but it all boils down to the fact that you would do anything for that little girl.

I know how change can trigger setbacks with kids with autism.. you are handling it with muscle. You are her mother and you are showing her that even through the hard times, you are always there for her. She can always count on her mother...And she may not understand that feeling but by cuddling with you after the week from hell...she is getting it. She knows that you would never hurt her, would always love her and always be there for her.

Go mom!

DariDonovan said...

Love that photo!!!! Hope this week goes a whole lot smoother for you!

Nag Time said...

Hugs Elle! I understand (on a much smaller scale) what you are going through There are always challenges and set backs. Tim recently decided that he's going to go with Sean to the bathroom, because he's tired of finding pee all over the floor and dirty underwear in the basement closet (eeewwww!). Just like small kids, this is one area that they have control over. Kierra can't control her aide leaving, and like you said, autistic children do not do well with change. Hang in there Momma!

Twisted Cinderella said...

*in tears* I can feel your frustration and your worry. And then to read that last paragraph and feel the love come shining through . . . wow.

I hope that this week is a better week for you and your beautiful little girl.

On a side note, changes of any kind are bad thing in our house too. My five year old reacts terribly to change. Any time anything changes her life, she become difficult to handle, pees her bed, all sorts of things. Nowhere near the troublesome week you have had, but I do understand that feeling of frustration with nowhere to direct it.

Lainey-Paney said...

Oh Elle, that just brings tears to my eyes.
I can't imagine Gage changing...being kind of stuck in a different reality...I can't imagine how heart breaking that can be...

...and then knowing that every day you can't dwell on that & you have to keep going.

You're definitely stronger than I am!

Slick said...

Geez Elle, I admire you, seriously.

I couldn't even begin to comprehend what you're going through but it sounds like you're doing alllll the right things with her.

So, the missing aide is causing the disruption in her schedule?

Elle said...

Thanks all. I needed a pick me up.

Slick, we THINK that's the problem We can't be certain. I will be meeting with the psych later this week though. She said for now, just make everything very structured and routine for her. Hopefully that will help the situation.

Until then... valium anyone?

Tuesday Girl said...

I can't imagine what you are going through. Youa re a good mom, and even teh best moms get frustrated or mad at situation a lot lighter then what you are dealing with. I know I do.
(((Ellle)))

Maria said...

Oh...stress. Lots of it at your place. But, you know you handled it so beautifully, Elle. And really, how lucky is K to have you? You see her need for constance and comfortability in nothing changing.

You just do everything right and with such grace.

tulipmom said...

Such a perfect title and song for this post. Really, it says it all.

Mary Poppins said...

It's hard to accomplish many things and see them take backward steps...but like you say...when you cuddle on the couch, or in my case, watch my lil' one sleep or smile..it just melts all my frustration away and I recharge to tackle the situation again...