The journey threw life with a girl with Fragile X and Autism
Sunday, April 17, 2011
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!"
Thursday, April 7, 2011
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.
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.
Subscribe to:
Posts (Atom)