14th Fragile X Conference

As many of you know, I just returned from Orange County, California from the 14th International Fragile X Conference. It was an AWESOME experience was once again. It's always so good to see my Fragile X Community/Family. Especially my close friends who I don't get to see all the time and see each other every 2 years and catching up with them. Hoping to change that in the future. 

This was my 4th conference attending, although I've been to other conferences and had awesome experiences there as well. Saturday night after telling everyone goodbye and giving hugs and riding the elevator by myself and going to my room, I had a chance to think and just sit down and soak it all in. The experience that I had at this conference was unlike any other experience like at the other conferences. It really hit me and I realized what my role is in this whole journey and it's to be a self-advocate and to talk and share about your journey with others and how you cope with that journey and help each other out and be there for everyone. 

Also being on the female panel this time really hit me too, so many people came up to me told me what an inspiration Iam and what an awesome and amazing person Iam and all of these other things and parents in tears after our talk and the parents telling us what an awesome job we did and how touched they are by our lives and etc. and how brave we are getting up there and talking about our lives. 

I'm just in awe about all the feed back that I've gotten at the conference and all of the complements as well. 

I do have say that I enjoyed the self-advocate sessions a lot. I got a lot out of them and I didn't feel bored at this conference at all. It gave me a chance to connect with other self-advocates and meet others with Fragile X. I learned some tips on how to deal with my anxiety and learned some breathing techniques to help calm myself down when I'm anxious. 

Overall, I had a great experience and looking forward to the next one in San Antonio in 2016.

Driving Update 2

Sorry it's been awhile since I've had a blog post. I've been busy with work and vacation and what not. Well anyway, Memorial Day weekend, I went driving with John, his Dad, and his sister Malia( who is 16 and also learning how to drive). We did some practice with parallel parking. We practiced the parallel parking at a local park where we there was an empty parking lot and a curb that we could pull up to. We brought two wooden saw horses to act as 2 cars and parked in between them. 

Parallel parking isn't the easiest thing to learn. It took quite a few tries to get it down. It was both mine and Malia's first time ever practicing it but we have an idea on what were doing now. 

I will be honest, I did get a frustrated with myself when I had to start over a few in the process of trying to park but I had to push through the frustrations and eventually I got it right. I was a bit anxious going into the practice because I wasn't sure how it was going to go. It ended up going better than I thought. 

Obviously I haven't met my goal of getting my license this month and pretty disappointed about that but this summer has a been busier summer than I had planned. Oh well. I'm hoping before I go back to school in August and if not then before this year ends!!! 

- Chelsea 

Celebration Retreat/FX

As many of you know I'm part of a retreat group called Celebration. I have done 6 retreats so far as a team member and will be my 7th retreat in December. Over the past year or two since John and I have been on team we have found a community who accepts everyone for who they are, through Christ. 

While being on team and getting to know everyone really well, and becoming close friends. John and I have met some of our closest friends and still are. Anyways, through this community, I have felt more comfortable talking about Fragile X to everyone. I have given some witness talks over the past few retreats and have mentioned Fragile X in them, and what it is because most people no clue and because I was called to give a witness talk to share important things in my life.

In the witness talks I have talked about some of my struggles living with FX. Also outside of giving a talk, I have shared my struggles with my team members and close friends because they accept me for Who Iam and they have been there for me and are continually there for me if I ever need anything. They have been a huge support in the whole learning to drive and giving me confidence that I can do it and not to give up on it. Being on Celebration, they have constantly reminded me of this quote: "You are created in the image and likeness of God". I have learned to accept that God gave me FX for a reason and he created me this way and I should appreciate it. 

I always wear one of my FX t-shirts on each retreat not only to spread awareness but in hopes that maybe a New Kid has heard of it before. This summer I plan on getting FX t-shirts for my friends so that they can spread awareness as well. If they want a t-shirt! Lol 

One of my closest friends on team, she is going to school to be an elementary school teacher. Well this semester she has a class dealing with learning issues and they have to do a project on a learning disability and they had a list to choose from and on the list was Fragile X!!! So she decided to do that because she knew me who had it and could give her tons of information about it which I did. I was in awe when she told me that she was doing the project on Fragile X. It made me smile and feel good. She was spreading awareness and she is learning more about it at the same time. Also teaching her teacher about FX that they might not know about it. 

Anyways, I'm extremely thankful for God putting Celebration in my life. My life would not be the same without it that is for sure. I have found another community who love me cause I'm me! 

Driving Update

I just wanted to update everyone on how the driving has been going. So recently I have been back out driving since the weather decided to cooperate and was nice out. It had been a long while since I have driven, October to be exact and then winter came pretty quick and never got a chance to go back out because it was either showing or freezing rain or both whenever we wanted to practice. 

Anyways, I was a bit anxious about going back out driving because it had been so long and I was afraid that I was going to have to start all over again and what not when I was finally getting the hang of it. I didn't forget anything really. I remembered more than I thought. For example: learning to ride a bike again. The driving practice went really well and I did Awesome! Got some night driving practice in which was nice and important too. 

I got the whole driving forward and stopping and going down. I just have to continue to practice more on the backing in and out, cutting the wheel to turn and pulling into parking spots and parallel parking and that is about it. Once I master those down I'll be ready to take my drivers test to get my license which my goal is June!! 

High School

I went to a small catholic high school called Newport Central Catholic in Newport, Ky. Great view of Cincinnati. Anyways, the school had about roughly 440 students in the whole school when I attended. In my grade alone there was about 110 students. 

My Freshman year was good. I didn't get involved in anything. I just went with the flow of things. I was getting used to the hang of high school. 

All four years of high school was in a program called Academic Enhancement. In order to be in the Academic Enhancement program you have to have a diagnosis of a learning disability or some sort of mild learning disability in order to be in the program. Some students start out in it their freshman year and eventually don't need it anymore for their Sophomore or Junior Year. I was in Academic Enhancement all four years of high school. It was one of my 5 classes each day. 

In Academic Enhancement we did a lot. We went over homework/did homework. Went over school work in general like Math problems. Learned study tips. Worked on projects for school like a powerpoint or research paper. Got tips for taking good notes in classes. Also studied for tests and quizzes. Another thing they did was made adjustments for tests like they modified my tests sometimes for me. For example: For my one of my religion classes my senior year the teacher's tests were all short answer questions and for some of the questions you had to have the exact or close to the word to get it right. So my Academic Enhancement teacher took the material that we had to know for each test and made her own test for me and some of my other classmates in the class that were in Academic Enhancement with me. The test she made for us was short answer, some multiple choice, matching with word bank. It made the anxiety a lot easier for me for sure. I was also able to take my other classes tests and quizzes in there as well like Math tests and quizzes. I also had some of my tests read to me. 

We also got weekly reports each week. Telling us what are current grades were in each of our classes for that trimester and when tests and quizzes were coming up. Also what material is going to be covered in each of our classes for the upcoming week. 

While being in the Academic Enhancement program I got 2nd honors( which is a grade point average of 3.5 or higher) all 3 trimesters my Freshman year and 3rd trimester my Sophomore year and then all 3 trimesters my Junior and Senior Year. 

After being in there for 3 years, I debated if I needed the class for my Senior Year because I felt pretty good about how to study for my classes and the test taking tips. I felt like I should at least try without it for a trimester and if I need it I could go back to it the next trimester. I ended up making the decision that I should stay in the class for my senior year. 

My Sophomore Year I got involved in backstage of the school play that they did do every spring. It took some talking into from some friends and teachers to do backstage for the play and it was a lot of fun. I made the decision to be in the play my Junior Year. 

My Junior Year I got involved with the school play and it was Grease. It was so much fun be a part of! I was in the play and it was a lot of fun learning the songs and dances. I met a lot of new people. Also during Junior Year, I hung out with friends a lot more and went to football and basketball games. At the end of my Junior Year, My math teacher at the time and who was/still is the girls cross country and track coach asked me if I was interested in running  Cross Country in the fall and I said sure. I didn't have to tryout I just had to sign up! 

Senior Year was great! I got involved with my first sports. I did Cross Country and Track. Cross Country was SO MUCH FUN! I loved it!! I trained over the summer and then practices started in early August. I did get some medals and ribbons while doing Cross Country. I got the most improved runner award in Cross Country at awards night. I did like Track and got some ribbons in that too but I really enjoyed Cross Country a lot more. 

Graduation came before I knew it. My high school career was finished and let me tell ya it went by really fast. I enjoyed my time while at NewCath and was ready to move on and go to College. 

Junior High

The Transition to Junior High was a bit of an adjustment. I was in a class of 30 kids including myself in the 6th grade but the number went down over the years and in the 8th grade, I ended up graduating with 22 kids. Anyways, There were new rules to follow and the discipline system, and etc was all new and different to us at fist but once we got used to it, it was easy. 

My teachers were available to help me with school work when needed. I was able to come in before school, during recess and even after school to get help. Since, I went to a catholic school there was no special services but the help from the teachers was just great for me. 

In Junior High, I was pretty into sports. I did soccer in the fall and spring all 3 years as well as basketball just in the 6th grade and realized I didn't like it anymore. I also played volleyball in spring all 3 years and I did cheerleading in the 7th and 8th grade. The best thing was I didn't have to try out for any of these sports. I just had to sign up and I was on a team for my school and on a team with the girls in my class which was also really nice. I got to see them at school and outside of school for practice and games. It was tough keeping up with school work and playing sports but I worked hard and did the best I could to keep up my grades which I did. 

Not only did I do sports, The Junior High always put on a play in January and I was in the play my 7th and 8th grade year and it was a lot of fun. I enjoyed it a lot. It was a lot of work and kept me busy especially when playing a sport and keeping up with school. 

Even though, I did sports and did the plays I was still very shy and quiet. I didn't initiate to hang out with my classmates just invited to do stuff with them which was very nice and I'm very thankful that they did that.

In Junior High, we had socials and those were fun. We had music playing for dancing and there were also games. Each social had a theme, some of themes we had were Hawaiian, Halloween, Sports, etc. We also had food too.

During the summer before going into the 8th grade, Two parents of two kids in my class decided to form a group called Colts Care. Colts is the mascot for the grade school I went to. Anyway, That summer and throughout the school year we volunteered at a local soup kitchen and served many meals to the less fortunate people and we went swimming with kids who were less fortunate. One Friday night, we had a parents night out where the parents dropped off their young kids and babysat them for a couple of hours and we played games and what not with the kids. It felt great to do stuff for the community and give back to it. 

8th grade year went by very quickly, well grade school went by really quickly to be honest. Before I knew it, it was time to decide to where I was going to go to high school and it was a subject that I really didn't like to talk about when the time came to choosing where it would be best for me to go to school. I didn't like the idea of going to a new school, new people, and new teachers and what not. I knew I would be leaving a school that I have gone to for 9 years. Another part of me was ready to leave and move on with life and go to the new ranks of high school. 

So 8th grade graduation came and I was feeling excited and anxious at the same time. I was excited about graduating and moving onto high school but anxious about leaving grade school that had been my comfort zone for the past 9 years. The ceremony went great. I got The principal's choice award which gave me $500 towards my tuition at my high school where I was attending. It was an award for two students who worked hard in school and was not at the top of their class and would need some assistance paying for high school. I was very thankful for that and so were my parents for sure. 

After the ceremony, there was a reception with a 8th grade video of pictures of all us when we were little and in grade school. We all got a copy of the video on DVD and I watch it sometimes when I think back to grade school.  

Well that summer I had a party for graduating from the 8th grade with family and friends and it was a fun party even though it was hot outside but at least the sun was shining! I got money and other good things. 

Well that's it about Junior High. If anyone has any questions for me that I didn't talk about in my blog post, feel free to contact me by sending me a message on facebook or e-mail. 

The next post will be about High School. 

With lots of love,

Chelsea 

Awareness Month!

Well as many of you know its Fragile X Awareness Month and that yesterday( July 22nd) was Fragile X Awareness Day. I also hope that many of you have enjoyed the Fragile Facts that I have posted as my facebook status each day during this month. I hope that you have learned something new or more about Fragile X than you already did. 

Fragile X really didn't mean anything to me when I was 10 years old when I was told that I had it. In 2008 it became a bit more meaningful to me when I came down with depression ( more about that in my high school post) Anyways, I went to my first FX Conference in St.Louis and learned so much about Fragile X and what it was. Also my first time getting introduced to other people by my Grandparents and them telling people that I have the full mutation and then getting the jaw dropping look that they can't believe that I have it. I also got to meet females like me who have the full mutation of FXS and they had the same symptoms of me, like the learning issues, the anxiety, and even depression. It was great hearing their stories on the Female Panel. I didn't feel so alone anymore after meeting them and hearing their stories. I knew I wasn't the only girl who was struggling living with FX. 

I knew going into my Junior Year that I had to do a big research paper for English class and I decided to do it on Fragile X and educate my teachers and classmates about FX. I got a lot of information at the Conference and online from the website. I did a good job on the paper and even gave it to my family members who weren't too familiar with FX to read and they really enjoyed reading it. 

In 2010, I went to the Conference in Dearborn, Michigan. It was my first time on the Female Panel. It was my first time talking in front of a big crowd of people of 50 or more. Once again I got to meet some new girls with the Full Mutation of FXS. I got to share my grade school and high school experiences. I amazed a lot of parents and got lots of compliments on my talk and that they hoped for the best for their daughters with FX. I did make one Mom cry, because I went to a Catholic grade school and high school with having FXS and she was so inspired by that. 

Last year, I went to my third Conference in Miami, Florida. I spoke on the Female Panel a second time and once again got a lot of compliments on my talk. I got to see a lot of the FX Community which is pretty awesome! ;-) 

Now, Fragile X Awareness means A LOT to me. I want people to be aware that this is actual genetic disease that I have it and that many others are affected as well. I do wear my FX shirts out in public often in hopes that someone asks me what it is or says I know what that is. Now I have my blog to tell people about my experiences with living with FX. Anyways, Iam getting used to the jaw dropping look of surprise when I tell people that I have FX. If anyone has any questions about FXS just let me know and I can answer it the best that I can. I do know lots of people in the FX community that could help me answer it as well. 

Well I hope that you all enjoyed this post! :-) New one SOON!!! 

With lots of love, 

Chelsea 

Learn more at: http://www.fragilex.org/ 

You can also read some stories about families in the FX Community: http://www.fragilex.org/community/faces-of-fragile-x/