Mommy turn on Rio please

Okay so I have to tell everyone what Athena just did. So first you know that we are working on the PECS System and we are only at level one. Where she exchanges any card to reseave something. Well we just got done eatting and we had to turn off Rio. She found one of her random cards and was holding it and trying to get into the DVD player. I asked her if she wanted me to turn on the DVD player and she just looked at me so I held out my hand and said if she wanted me to turn on Rio to give me the card and I had my hand out and she handed me the card. I jumped and turned on Rio and said good girl. I know it doesn't seem like much and she might never do it again but it was like a glimps into her world and right now I feel on top of the world.

Zoo day and feelings

So yesterday was the Elkhart Brass Family Picnic at the Zoo and I loved it. Athena did well. Not to many break downs from Athena. She got tired of course it was way past her nap time. The only thing that I hated to watch is how different Athena was compared to the other children. I did however see another special needs girl. I loved watching her go up with her daddy and push his butt. Then I look at my daughter that has no clue what is going on around her to the point she took something from someone else. All Athena saw was the fan and not the person holding it or playing with it. I have seen the look on her face. When you finally get to her and tell her no and not to do that someone else is playing with it. It is like you finally broke her world and she gives you the look of when the hell did you get here. The zoo of course was a bust she sees nothing but the fish and not even the kory it is the carp or bass by the lions that you can feed. Athena loves to watch the fish jump and panic over the food. And she likes to touch the food herself. We did watch the otters until she got scared. The only time Athena did have a few issue of course when another baby started to cry. This seems to be normal now. Every time something or someone is in pain Athena is right along with them. As I watch Athena at these functions family or groups I realize how more and more I just do them for me. Athena gets very little enjoyment out of them and it is sometimes to much for her. I wonder when or if this will ever change. My daughters birthday is in three months and I was going to try and do a party but is it really or me or her. I’m beginning to feel like I do more things for me  to feel like a normal mom with a normal child that will play with others, eat the food, and eat the cake. Which none of these things Athena does. I feel so out of place at times I want to find a place where Athena and I belong. Well this was a lot in one but it was what I was feeling at this excite moment I think I need to get it out.

Sleeping vent

My rant and vent for the night. Okay first I must scream. AAAAAAAAAAAAAHHHHHHHHHHHHH okay I feel better. Now lets start the story from the beginning working my way to why I am up and midnight and upset. When my daughter was first born it wasn't a happy birth after 1-2 hours of pushing to deciding it was time to get her out by c section. So in my eyes a little traumatizing, right. Then when I tried to breastfeed she did well for the first day but but the second not so well and the nurses was forced feeding her to me to the point that she was now pushing away. I finally started to give her a bottle. But then she started to start screaming in her sleep. She was a sleep, not hungry, and not wet. Everything in my mind pointed to her first night tare. Doc say that can't happen and if it did then it is neurological. Then comes the formula ups and downs, She would be gassy all the time and waking up in the middle of the night screaming but yet still asleep. So that was the beginning.
Then has she got a little older. The night times would become a problem at times. I would get know sleep for weeks. She would stand straight up in her bed screaming in tare for hours, eyes closed, and completely out. It was always weired to watch also scary. We notice that is got worse on bad days where are schedule was just off or when we had to much fun.
Now we are getting close to the end I promise. A few months ago I started to notice that Athena was having these night tares along with air bubbles is what I'm calling. A few times when she be screaming in her sleep it sounds like she is tiring to burp, fart, or puke. I few times she has puked which then she normally wakes up. But the others if she is able to pass it she calms down.
Okay now we went to the GI doc and they gave me something for reflex and she was doing so well and then she got sick and my main thing is tyring to get pain reliever down her and scream whatever just keep the fever under control. Well she didn't have the reflex today. Now about almost 2 hours after falling asleep she woke screaming and I heard that sound I knew what it meant. I picked her up and sure enough tummy and chest feel air filled. It is tight and she is push both ways. Trying to calm her down I'm pretty sure she might have been awake I'm not sure but when I put her back to bed she was out. Okay my stupid for not giving her the meds but first don't tell me that she can't have night tares at an early age. Don't tell me she doesn't need to be checked out for any type of sleep study because you don't think she needs it. You are not the one getting no sleep because your not sure what is going on in your daughters body.
I'm sorry that this is so long and there might be a few things wrong with it but I am just so tired of it all. I just want and happy baby that can get good sleep. Thank you all for reading.

National Fragile X Foundation News: Dad’s Turn! Help us with a Father's Day video

National Fragile X Foundation News: Dad’s Turn! Help us with a Father's Day video: "For Mother’s Day, a couple fragile x parents collaborated together at the last minute and created an amazing tribute to the mothers’ of frag..."

Puzzle Piece

They haven't fully diagnosed Athena fully yet with Autism but I thought of something today that I just wanted to share with the rest of the world and of course with you. With it being Autism awareness month I thought it fit. If my daughter is a piece of the puzzle dont that mean she fits somewhere. Then why is that everywhere we go we feel out of place. It is like she fits nowhere. Like she is an extra piece that you just discard from the big picture. Or is it the Fragile piece that is so unique and colorful that you put in a frame and hang up in the living room and tell everyone, "Look what I found!"

Finding out

I haven't told the story of how we found out about Fragile X. The doctors that she had aspergers or anglemans. So they did chromosome test ans it came up negative. This was also the time we found out she was being lead poisoned.

When the chromosome testing came back negative my First Step test started pushing me to go to Riley's hospital to see a behavior specialist. At this time I also started to notice Athena twitching it looked to me like a seizer. So we also saw a neurologist. So August 9, 2010 we went to visit everyone. While there the nero doc looked at her and thought how pretty she was and then gave me a look and said, "you know she so signs of Autism." She said it like I did already know and she was ready for me to fight her. I look at her and said yes I know and then said, "Are you sure." She told me that she could diagnose it yet because she wasn't even two and then shook her head yes, but wanted to run some genetic testing just in case.

We next saw the Behavior Specialist. She wanted to do more testing and then the last thing she said was that she was afraid that we would not be able to get her back. As I walked away I didn't know what that meant and it burt in my soul and when we got to the car I cried. That was something I wasn't expecting to hear from anyone. We showed her, Athena was walking two months later.

In September I got a phone call and this is how it went. Miss Windsor are you Athena's mom? Yes. We got Athena's test back. Yeah. It's Fragile X, it's genetic, and you need to see the counselor. What do you mean what is it again what does this mean. We don't know anything about it just that it is bad. That was all I got and that is how I found out about Fragile X.

went to the mall

I just got done ordering Athena her chew neckless and a foam puzzle I can't wait. Also we went to the mall yesturday and she did great, she walked areound, flapping but not screaming. She did do alot of humming but no breakdowns. I was so proud I wanted to cry. She did panic every once and awhile but we picked her up and held her close. It was like the people around her wasn't getting into her world. Even when she was walking around it was like they weren't even there. Walked right into them. It was funny at times but of course it was alot of I'm sorries. Then I found an autism charm for my braslet I was so happy. Towards the end we went to the bookstore and got her a book but then I saw Kiland (SP) and she grab that thing like she had a death grip on it so we got it for her. I just had to share because I"m so proud of her. Thank you for reading.