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.