Tuesday, July 29, 2008

It's a Wonderful Life

OK, this won't be all I hope, that I take the time to post about the conference but, I wanted to check in really quick with those of you who were waiting to hear about it.

First of all I loved flying! I was like a little kid--I kept giggling and looking out the window and taking pictures, so I will post a couple.




I saw a few sights with the little time we had. We saw the St. Louis LDS Temple, beautiful.



And we went to the Arch (of course) and rode the tram to the top so I took some pictures from up there, 630 feet high up there.



And I found the way to the Hogwarts Express at Platform 9 3/4!! (cool painting inside the mall that was inside my hotel that also included the ballrooms where the conference was held--it was all VERY convenient.)



As for the conference, it was one of the single most incredible educational and life altering experiences in my life--seriously. I want to go out and conquer the world and let everyone know about Fragile X Syndrome!!!

I learned so much about Fragile X Syndrome and its many accompanying traits such as: hyperarousal, anxiety, night terrors, speech delays, perseveration, inclusion in school and so many other things. I think the main focus at least for me was on hyperarousal. It is so often misunderstood as a low attention span or lack of eye contact which often leads to a autism diagnosis.


But, one of the most amazing experiences was the speech that was a panel discussion with 4 young girls (ages 17-28) who were there to tell us their stories and answer our questions. I cried the whole time--what an inspiration they were. Standing there as Full mutation Fragile X Syndrome females testifying to us the power of knowing what they have and how to deal with it, move forward and make the best with what they are facing. One of the girls, pictured with me (the blond to the left of me) said, "When I was in high school I feared that FXS would label me and that I would lose sight of who I am; I learned that Fragile X does not define who I am, I define who I am." So powerful, I hope that 2 will have this fantastic attitude. All four girls have been going to college (with lots of help), have their drivers licenses, and jobs. Then I met a woman who is married and has a son with Fragile X and it was only then that they discovered that she was a full mutation Fragile X!!! She never even new, no one would have known! She, I hope, will continue to stay in contact--I love her to pieces. Amazing, truly amazing.

There were so many other kids there with Fragile X, it was so wonderful to meet families who were in my same situation!! I will especially remember JP, he is a 23 year old young man with FXS, he said I was hot! What a sweety he was, he even danced with me several times at the Banquet/Auction/ dance! His mom has written a book called "Love is Spelled with an X" -- it is memoirs of her life with JP. I want to read it. They were a great family to get to know, (thanks guys for letting me sit next to you at the banquet)!




I am so proud of 2 and 8 and also, so proud of 12 and 16 because of the love, patience and compassion they have for 2 and 8.

What I truly learned is that I am blessed. Amazingly blessed. My family, close and extended, my friends, and neighbors are such great supports! I love you all and appreciate you so much. I have a wonderful husband who works so hard right along side me and the kids. 12 and 16 who were thrown into the middle of it all and do a great job. I am blessed. What a wonderful life!!

Friday, July 25, 2008

From St. Louis!!!

Hey, all, I got access to a computer and thought I would drop a note.
This has been one of the most awesome educational experiences of my life!!!!! I am learning so much! It is so informative and uplifting and incredible. I have met some great people and I hope to meet more tomorrow!

I went to the Arch yesterday and took the tram to the top! Wow!

And today we went and saw the St. Louis Temple--pretty! I can't wait to be able to post pictures!!!
Here is an awesome picture of the hotel I am staying at though!!!

Wednesday, July 23, 2008

Today is Fragile X Awareness Day

OK, so it was really yesterday, sorry, I was a little busy packing for my trip!


I wanted to show you all my design I made up for some T-shirts so that I could wear them to the conference. I thought that would be fun to do.


Oh, my gosh I am going to fly!!! Aaahh! Woo! I am so excited now! This will be a great conference I will learn more about Fragile X for my kids, my entire extended family and this state (since I am the area representative for the Fragile X Association of this state.)

I just hope my husband can handle the kids while I am gone...

Sunday, July 20, 2008

I posted several new posts today scroll all

video

Chin faces

Did you ever do this???.... Too much fun! Enjoy! I know we are crazy--but that's the fun part!

video




Nerves

OK so I am a little nervous/anxious/excited for my upcoming trip to St. Louis for the Fragile X Conference. Nervous because I have never flown before, anxious because I don't really know what to expect and excited because I will learn so much, go sight-seeing and have a nice hotel to stay in!

I am sure I will be overwhelmed by all the information that will be coming at me but, I am going to take a tape recorder to tape all the classes I go to so I can listen to it later. That is what I did when we went to Sacramento for research at the M.I.N.D. Institute--it was been 1 1/2 years and I still haven't listened to the tapes again. So, who knows if it will do me any good or not.

This is a picture at the M.I.N.D Institute--3 generations of Fragile X--my dad (guy on right-carrier), me (carrier), and my 2 children who have full Fragile X Syndrome. My husband (left) is a trooper.

Sprinkler Under Trampoline






Hot day yesterday so my sister brought her kids over and we let them jump on the tramp with the sprinkler underneath so they could cool off and have fun. 2 was all for it. 8 didn't join in till later so I have no pics of him. 12 was on a horse ride with Marc for the day and 16 just did her hair so she couln't get wet! Anyway, it was fun, Jessie and I had a good time watching the kids play. Although, her daughter didn't really want to jump too much.

First Harvest


OK, so it isn't much but, here is the first of what we got from our garden 2 weeks ago. I took this picture specifically for the blog so here it is finally. I am so excited because my brother encouraged me to plant carrots and they are doing so well here! Yay! Since this first harvest I have picked 5 tomatoes, 12 carrots, 15 peppers (variety), and 4 zucchini!!

Saturday, July 19, 2008

Scared Hiccups

Hey, did you know that if someone scares you when you have hiccups it really works??!!! I found this out last night at my friend's husband's surprise party!! I announced that I had the hiccups and went into the kitchen to get a drink to try to get them to go away. I was standing there talking to my friend's husband and he commented on me having the hiccups, next thing I know... Baaaahhhhhhh! I jumped and screamed so loud, I haven't been scared like that in years... I mean my heart was racing! So funny. But, guess what, my hiccups actually went away! Thanks!

Wednesday, July 16, 2008

Horses and friends

Here are 8 and 2 with 8's best friends K and M. They are loving it--I just had to take pictures! So cute!

Sunday, July 13, 2008

Don't change his mind


OK, I have to post about my son's friend K who is also 8 years old.

I have been having yard sales to earn money to go toward my trip for the Fragile X Conference. Yesterday was my last one. My friend sent her kids over to buy some things with their dollar bills. Her daughter K asked why I was having a yard sale and she explained to K that I was going to a Conference to learn more about 2 and 8's minds to be able to help them better.

And K replied,
"What's wrong with 8's mind? I like it the way it is."

Oh, how sweet--I am so blessed to be surrounded by such wonderful people. Kids are so sweet!!!

Tagged by Mary

Rules are: all answers must start with the first letter of your last name.

What is your last name? Gibson
4 Letter Word: goat
MakeVehicle: GEO
Boy Name: George
Girl Name: Glenda
Pet Name: Goober
Occupation: Geologist
Something You Wear: green galoshes
Celebrity: Grace Kelley
Food: Grapes
Found in Bathroom: Gilette (shavers)
Reason for Being Late: Got stuck in traffic
Cartoon Character: Goofy
Something You Shout: Get outta here!!! (say it like a redneck)
Animal: Giraffe
Body Part: gizzard
Word to Describe You: great
Something You Like To Do: Gallop my horses
Place You'd Like To Be: Germany

I tag, Amy, Ashley and Amber