*******UPDATE*******
I am posting this to remember the journey to her real diagnosis and to help any fellow autistic parents out there. Obviously her diagnosis of hyperacusis was short lived. We found out shortly after this post that it was indeed autism.
So beautiful!! I have tears in my eyes as I write this post.
This is my Lacie Lou. She is my angel and the youngest of my 6. This blog is about her and is probably being written because last night was a "hard one".
As I type this Im trying to reach a conclusion as to wether or not I want to do this but I wanted to be real, right? So here it goes....
She is the light of my life and has brought more joy to us all than I ever thought possible. I didnt plan on her being here, in fact, I only wanted 1 kid....lol kinda passed that goal eh? My first child was the only planned child. The rest of my children were born on birth control (every form you can think of).
Before you go jumping the gun let me say that I would not trade not even one of my babies for ANYTHING! I am so glad God blessed me with them....all 6 of them!
Lacie is different from the older 5. Not because she has a different father, but because she was perfect! My other children all came out of the womb kicking and screaming and bouncing off walls. You think im kidding? I cannot tell you how many vcr's (yes I am that old) were stuffed and thrown away and bought again....oh and dont even start me on the toilets that were clogged with only God knows what and had to be replaced!
Not with Lacie, though. She came out smiling! She started laughing at just a few weeks and no it wasnt gas....it was just the amazing sweetness that exudes from her being!
She barely ever cried as an infant and even now, she only cries when somethings going on that she needs help with. She is a lover, ohh my is she a lover! She has a relationship with each one of my children in a unique way but the one she tends to cling to is Zabe, from day one!
I started noticing that there might be a problem about a year ago. My neice and I were pregnant at the same time. She had her daughter 3 weeks before I had Lou. Her daughter was crawling, walking, talking....hell, she was a super child really! I could not believe how fast this child advanced. She is incredibly smart and beautiful to boot. I know each child matures differently in their own way, this is not my first go-round! I know this, but I started thinking, "ok, why is she not talking at all? why is there no attempt at a word? How long can she continue with her own language?"
I started to bring up my concern, but her father (who lived with me at the time) wouldnt hear it. I, secretly, took her to a few specialists because I was concerned due to some of her behavior patterns that it could be Autism. After testing and a few "days of observation" they finally told me it wasnt Autism, or Aspergers....basically they just told me that she needed more time. She was a late developer but all was ok.
A few months later, I knew something wasnt right. I cant really put it into words but Im her mother and I just knew. She has this way of cupping her hands over her ears when she gets nervous....afraid...or even too excited! I finally called another specialist from Childrens Hospital....
FINALLY!
Someone who agreed that something wasnt right. After hearing me out (and watching me fall apart as I told him about things I noticed that seemed worrisome), he knelt down in front of me and said, "its ok to cry, Rachelle. You have been fighting this battle alone and you are right, there is something wrong. I think I know what it is and I want to give you some information. I am also going to give you a referral to a hearing specialist because I believe Lacie has Hyperacusis."
As I listened to him explain I cupped my hands over my face and started to sob! It was relief and fear all at the same time. It has a name! I am not crazy!! My daughter has a problem and Ive been tiptoe'in around everyones critisms and judgmental stares and comments, not to mention being bullied into keeping my mouth shut about my concerns because "there is nothing wrong with her!"
Hyperacusis
It has a name! She has an appointment now with a specialist and we are finally going to be able to help her. The hardest part is yet to come. She will have to have her hearing tested and its pretty grueling and even painful for the people who have it. There is a light at the end of the tunnel though! They have hearing devices that can help, and I am praying fervourously for her to have what she needs to have a normal life.
Last night, she woke up at 3, holding her ears. She was crying. All I can think of is that my son had come and crawled up in bed with me while I was sleeping. He has turned the tv on and then fallen asleep. So it had to be something on tv that triggered it. I quickly turned it off but that did no good. Maybe it was a bad dream, I dont know, but for the next 3 hours she tried desperately to go back to sleep and kept waking up crying. I took her temperature, made sure everything was ok. She just wanted to lay with me....face to face.....and her tears broke my heart. By the time she went back to sleep, I was exhausted....physically and emotionally! I started crying and I got so angry for a moment. I guess you could say I was angry at God. I just kept saying to myself over and over..."why?? why does my poor angel have to suffer like that" Its so not fair. My faith is a major part of my life but I will NEVER understand how the suffering of children in ANY way can be acceptable to God. (I dont mean to offend anyone here, but its a question that I will definitely have and keep until I am able to ask Him why one day)
I am letting her sleep in as much as she needs. When she wakes up, I am going to do bananas and cream oatmel just the way she likes it.
Speaking of oatmeal, today is thursday...I need to go grocery shopping...uuugghhh....
Do you know how hard it is to go grocery shopping for a weeks worth of food for 6 children? Especially when you have a toddler in tow?
I am determined to make this a good day either way....I think I will take my angel to the carousel today :)
Happy Thursday, Folks
One of my favorite pics....that smile is so infectuous!
Is she not just the picture of beauty?
Sisters <3
