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.

The beginin

When I first found out I was pregnant I was scared because about a year before I had a miscarriage. About two or three months along we got my fetal protein levels back and it was positive. Then we spent the next two months scared that our baby might have narrow tube defects. Finally at five months along she let us see her entire body and saw that she was indeed a girl and no defects.  The pregnancy was not an easy one and I thought I could never be in that much pain before and then came the labor.
 The labor was quite an experience that I really do not wish to do it again. I was having contractions Friday night. On Saturday they got stronger but I wasn’t going to the ER until I felt sure she was ready to come out so I decided to go to the laundry mat and go about the day. Saturday at five I took a shower and my friend came over and told me that she thought I should go to the hospital because the contraction were one top of another. So we decided it was time to get checked in.
 When I got checked in I thought she would be in my arms soon, but boy was I wrong. I first was stuck twice for the epidural because the first one felt like I was being stung by bees. Then the contractions started to weaken so they  gave me potosine. Finally about midnight they told me to start pushing and after and hour or more of pushing and feeling that she was stuck. The doctor came in and said she was stuck and asked if I wanted a caesarean section. We all decided that is was for the best and finally after three days of no sleep Athena was born on Sunday at three forty-six in the morning.
 At the age of six months she got a flu that only lasted two days but from that time on I notice small little things that just didn’t seem right. At first I noticed how much she hated belly time. She got to the point she would put her face on the floor or in the blanket and scream. Then she wouldn’t roll over, sit up by herself, hold her bottle and that she was very thin. I started to ask questions and that was the start of trying to make my daughter have a better life. We don’t have many diagnoses but we have a lot of thoughts and plans to make her life healthy and happy.
 We have a diagnoses from a dietitian that Athena is failure to thrive and has been but on special  formula and now Pediasure. She is 33 inches tall and 21 pounds. She is long and skinny but she loves to eat. For some reason she just doesn’t pack on the pounds. We also started first steps when she was about eight months old. Her first consultation was the hardest to hear because that is the first time I heard that my daughter is globally delayed. The second one  said that  she has severe sensory disorder. Also during this time they tried to hide the fact that she does show some signs of being autistic.
 When I first heard she was globally delayed I was confused and upset. After doing some research and getting help from first steps I now understand. Athena doesn’t walk or really talk. She is smart she has found a way  to get what she wants by scooting on her butt. She can now sit up by herself , pull herself up to stand, and with help she will walk for a short distance. Her favorite word is dadda, she does say mum from time to time, and my favorite is when she tells people bye it sounds like die. All this I feel is thanks to my first steps team. Her sensory issues was finally brought up after a long week of no sleep.
 Athena has always been a daddy or mommy’s girl. She wants things soft and quite. I notice that when she was around her cousin that is only two months younger then her she would cry and one time I couldn’t get her to stop it lasted for hours. The cry was like no other I have heard it was like she was hyperventilating at one point she started to get sick. I started  to ask around and no one could tell me what was going on. Then one week we played and did a lot of running around and at night all she did was scream in her sleep. Finally I talked to some one and they said that it sounded like a sensory issue. I had an occupational therapist come and visit Athena and she that Athena has server sensory problems. That got me some more first steps therapists. Athena is my special little girl that surprises me every day.