Friday, April 17, 2009

Blog what?? Post who???

I know who this is. Her name is Saylee, also know as: Say Say, Sully (Brodys name for her) Say Jay (Saylee Jean...only my Gma JEAN calls her that), the middle child, the only girl, the SPECIAL child, the AUTISTIC child, seriously the list goes on.

During my first trimester mid-life crisis/nervous breakdown of this last month, Saylee has been hurting. Being the mother of an autistic child is sort of like being a mom of a "typical" child but without having your sight or hearing. You know you have a child, you can feel them, hold them...but without ever seeing them you have no idea who they really are and without hearing you have no idea what they want and how to help them. Thats pretty much your 9-5 gig with an autistic mom.

I can't believe its been a year since we started this journey. She is such a different girl then she was a year ago. Just going from an 18 month to a 2 1/2 year old is such a change in itself. I usually only have really good things to say about her "recovery" however, this is not one of those times. The girl in this picture, she's checked out for the moment. Taking her place is a bigger version of an echo of a little girl I used to know. The phrase of the day at my house lately is, "I DON'T KNOW WHAT YOU WANT!" That of coarse comes after countless fits that don't involve ANY form of communication in any way, shape or form. It's more like lets make a deal, I choose what's behind door #1,2, or 3 and if its not what she wants...she destroys the door! Sometimes it works, sometimes...not so much.

I don't want to write down an explicit list of her unusual, "weird" autistic like behavior...I didnt write this to make her look less perfect than she really is. I just feel like writing this down will automatically somehow make it better. I can handle the no sleep, I can handle the non-social desires to be by herself ALL the time but what I can't handle is knowing that if the whole "disease" ends in triumph or pure defeat... that Im the one to blame. "No pressure Ma!! Just know that when Im totally incompetent, have no friends and no goals for my life, Im blaming you!" That's what the future Saylee says to me in my head in times like these.

Her life is like a dance. I step forward, 2 steps back...2 steps forward, HOLD...1 step step forward, 5 steps back. I want to be her dance partner, sometimes she'll hold my hand, sometimes we move as one and end with a dip! and sometimes she'd rather dance by herself. Its ridiculous. I guess with all these analogies I'm trying to say in a nice way that sometimes even with the positive attitude, the faith and the extra blessing, etc... this whole autism thing TOTALLY BLOWS!

I feel better already.

We started her back on her diet today. She's been off for about 6 months and it has totally taken its toll. We're just going through this process of elimination. We gave her normal food and she was fine. WE WON! I thought, but we we're just allowing the harmful things to her body to slowly regain control...and they have. We're also back up to about 8 supplements a day. Her bottles are more like cocktails than juices with all the stuff we put in it! Im confident that this first step will help us get back on track with her recoverry. I have another anolgy for that but Im sure you don't want to hear it. I done with my woe is me post and the positiveness is already flowing through least for now. Its saying to me, "Find your in the journey, Kristen"...enough said.

"Life is like a box of chocolates, you never know what'cha gonna get!" I would have to disagree. If life were like a box of delicous, tempting, indulgent chocolates, I could just eat my worries away. (and we all know what that can do to a gals figure!)

P.S. I made the dress Saylee is wearing in this's my first one!


Robin said...

The dress is darling and so is the girl. And you my dear are amazing. Being pregnant and dealing with 3 small kidlets is enough to take its toll without throwing the autism into the mix. You are a really special mother and don't feel bad for feeling negative at times. It's normal. You really are doing more than most of us can understand. Hang in there, and don't forget to ask for help sometimes and take some "me time" once in a while.

Kristy said...

I love the dress and I have seen her in it and it is even cuter in person. I am so HAPPY you started the diet again... It WORKS!!! I love you and think you are a great Mom and Saylee is so blessed to have you as her Mommy. Please bring the kids over and play this week! Pretty Please?

Taylors said...

Kristen, you are one strong lady! I admire you a ton. You have every right to feel what you are going through -- because although you do have so many blessings including your wonderful children, you have been dealt a hard hand. But you're doing a great job, so just know that!
I totally believe it that diet, and I'm glad/sorry you are back on it. I know what a pain it must be, but if it's worth it, then it is.
Just know you have my support if you ever need a friend! Say is a great, adorable girl. And you are her best friend!