UCP National Awards Dinner & Celebration

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Hi Everyone!

 I am dedicating this post to my mother and father, because you are the best (obviously) and I love you both so much! Thank you for supporting me in all that I do in life, I don’t know where I would be without your patience, your inspiration, and encouragement over the years. 

I hope all is well on this lovely Friday afternoon! It is a beautiful 85 degrees out today, can you say summertime? Ahh, the sun is my love. Soooo…. I finally have a chance to sit down and write to you all, about last weekend down in San Diego. Where to begin? Well for those of you who don’t know already, I was awarded the United Cerebral Palsy National “Outstanding Youth of the Year” award for 2013!! I was very excited to be nominated by the UCP center here in Orange County, and I found out I would be receiving the award a few weeks ago. Still hasn’t hit me yet!

I think this is one of the moments that I’ll never forget–it was very surreal for me to be recognized on the national level for all my efforts over the years! I felt so special, and so honored to be attending with such inspiring CP peers and volunteers. I was amazed at how all of these people come together to work toward bettering the CP community for all of us. To be quite honest, I felt fairly unprepared for this event! It was a “bigger deal” than I imagined, and once I arrived I started to realize what kind of night I was in for! Everyone I met somehow knew my name, and knew I was being honored with this title. I was so flattered, but at the same time, it made me feel so proud of myself! I have enjoyed so much, getting to connect with all of my TeenCP friends that I hardly find this something to be awarded for, at times. But this night really put it all into perspective. I was greeted by several important people from the UCP National office from Washington D.C. and then met with actor (Breaking Bad) R.J. Mitte and co-host TV actress Cheryl Hines. What a cool experience! My parents and I were seated along with our friends from the UCP-OC center. For any of the other awardees reading this right now, congratulations to you all, and thank you for your dedication to improving the lives of others with and without CP! I was so moved and inspired by your words of encouragement as you shared your personal stories. What a great night we all had.

As for myself, I hadn’t prepared much of a “speech” in comparison to the other awardees, but I think I managed to send out my thank you’s and blessings before I got off the podium. Part of me wishes I had said more and told more of “my story” behind TeenCP and my efforts, but just hearing the audience’s loud and supportive applause left me warmhearted and a little bit speechless! Of course, my legs started to shake immediately…nerves and CP aren’t the best combo, as I’m sure many of you know! So I just want to extend my thanks to everyone who attended this conference, who took time out of their busy schedule to fly in and discuss important issues related to CP and disabilities. I didn’t have a center like UCP when I was younger, and seeing all of these people there for “my” cause made me feel so incredibly happy. To know that there are resources out there for families and young children with disabilities gives me great comfort. Again, thank you everyone at the UCP National Conference for your dedication, and also for believing in what I do. I think it is so important to raise awareness about all the young adults with CP that are coming into our world. We all can make a difference if we just belief in our potential, right? Sharing the positive and negative aspects of CP is also so important, I feel because it shows others that they are not alone in their struggles, and that there is always something about life to look forward to. We are all here to learn, to love, and to grow–and I’m just here to share that with everyone! I wouldn’t be here writing to you all today if it wasn’t for all the support and positive feedback I have received over the years. My TeenCP friends have guided me just as much as I attempt to guide others! It gives me great pleasure, writing, speaking, and sharing about my experiences because I know that maybe I making someone smile, or feel more at ease in that moment. Thank you, everyone for allowing me to do so.

As I am entering my 20′s, I feel more and more comfortable with my body and who I am becoming–but I always know I have a long way to go each and every day–and knowing that I have my online community to share that experience with makes me breathe easier at the end of the day. People often ask how I feel about being this “figure” for young teens and young adults, and I am never quite sure how to respond to that question. It is a blessing to be considered a role model, and I think that last weekend at the UCP dinner was a confirmation of that discovery; a real turning point for me is to realize that the voice that I have as a young woman with Cerebral Palsy is one that people listen to and respond to. I become emotional as I write this now, and I think it is because it is all so happily overwhelming for me, to feel like a leader. It brings me joy, pride, and confidence; confidence that I did not have 4 years ago, when I began blogging as a teen with CP!

In conclusion, I am also happy to announce that in the next few weeks I will have an article featured in four local Orange County Magazines that discuss my contribution to the CP community and what it is like to have CP as a college student! I hope to see an online version that I will be able to share with you all. Check back in, in the next few weeks and “like” the TeenCP Facebook Page!

Thanks for reading, have a beautiful weekend, my beautiful people!

-Katy

 

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RJ Mitte, Me (Katy Fetters), and Cheryl Hines!

TeenCP Conference?

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Hi Guys,

Just puttin this out in the blogosphere….

Would you attend a conference/discussion forum for/by teens with cerebral palsy? I was chatting online with a fellow teencp girl and she and I would love to talk in person about topics related to CP, and just meet others as well! I would seriously consider making this happen, but only if I had everyone’s support first.

Thoughts? Questions? Concerns? Does anyone know of any sort of representation or publicist/agent type person who could help me make this happen as a “TeenCP” event?

Let me know!

-Katy

Calling all TeenCPers!

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Hi all,

Are there any Orange County local TeenCP kids out there who use a wheelchair? I was emailed by a family resource center in Santa Ana and they are in need of a teen volunteer to come and talk about their experiences with CP and getting around in a wheel chair. This is not a large event, and I know it may sound a bit intimdating, but you would be helping SO many people with your experiences and show parents of children with disabilities that life can still be lived to the fullest! Although it may be hard talking about your disability, you will feel so glad you did afterward, trust me–whether you believe it or not, you have a powerful story to tell! So if you, or anyone you know is a teen in the area who is willing, please share this information ASAP! This will be held on April 25th, a week from tomorrow.

Email me for more information, or contact Kathleen McFarlin at kmcfarlin@rcocdd.com or call her directly at 714-542-5634

Comfort Connect Family Resource Center

Regional Center of Orange County

1525 N. Tustin Ave, 

Santa Ana, CA 92705

Thanks guys. :)

-Katy

National Siblings Day: TeenCP

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Hi All,

I hope you are all enjoying your week so far, in commemoration of National Sibling Day (earlier this week) I am going to talk about having siblings and what that means to me and CP. I have an identical twin sister, Sara, an older brother, Matt, and a younger sister, Daisy. None of whom have CP—but all of whom fully understand what growing up with CP has been like, just from an outer perspective!

I truly believe that my upbringing as a child has allowed me to be who I am today. With the help of my sibling, my confidence went unshaken, and my fear of judgment drifted away. With the help of my siblings, I was happy and my dream of normalcy came true. However, as children, none of us really knew what CP was. We were too busy playing at our neighborhood park or teaching each other how to ride a bike so we could all keep up with the other kids. I didn’t learn how to ride a bike almost three years later than my twin! But at the time, we all just accepted the fact that “Katy just takes longer to do things with her legs.” It was never something I mentally let slow me down, because my siblings never treated me any differently. As far as I remember they knew that I was slower and less coordinated, but it was just a fact and nothing beyond that at the time. I am so grateful for that, in hindsight. Even up into high school, my siblings and I always did things together and my CP was never an issue that separated me, from them. Whether it was playing soccer or just hanging out and riding our bikes to the beach—I did everything just the same, but at a different pace and that was easily understood by all. I am lucky that my family and I are so close that we have been able to grow up with this special bond, and I think that my CP has made us closer, in a way. Sara and my brother, Matt always looked out for me; they were my “protectors” at school and when we were running around being kids.

In an interview with a UCI college student, Irene Sanchez, Sara remembers: “When I think about growing up with my sister Katy, I think back to us always being together and riding our bikes to school or finding each other when we were apart because I always felt the need to be with her and to make sure she was ok.”

I always felt that, and still do. Whenever we cross a street Sara still makes sure I am beside her, just like she did when we were little on the school bus every morning! I remember one time, my brother Matt saved me from falling off the side of a moving escalator! Whenever we went on family hikes he always stayed behind me in case he had to grab my arm, as I often stumbled around on the loose gravel. I always felt that Daisy is patient with my CP and she understands how it effects me, both physically and emotionally. It is that kind of understanding and protection that I have been blessed with, and the fact that I never had to ask for it makes me all the more thankful for my amazing siblings. To this day, Sara, Matt, Daisy, and I remain the best of friends and we will always be loyal to one another as we continue to grow up and create our separate lives. Needless to say we all love each other very much and are all a part of one another in so many ways.  That is what my siblings mean to me and my CP as I have grown from a small child into the person I am today!

A TeenCP Story: Loving Life in Australia!!

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Hi Guys, Katy here: Meet Amanda, an adventurous college student who has Cerebral Palsy… she is our fifth guest blogger on TeenCP and can’t wait to tell you about her study abroad adventures in Australia and tell you some of her experiences with CP as she’s grown up!!

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G’day TeenCP!

My name is Amanda and I am writing to you from beautiful Australia! I am currently a junior at an American university, but I am studying abroad in the city of Brisbane for one semester. Almost two years ago, when I was recovering surgery to help correct my mild spastic diplegia cerebral palsy, I never thought I would be doing something like this. My case is quite minor; it only affects my walking and my balance slightly. But no matter how severe, I think that when you live with CP all your life, it can be easy to fall into a negative state of mind, especially when undergoing treatment. It is easy to believe that you are just as limited personally as you are physically.

Let me say that this is far from the truth. I have experienced difficult moments of self-doubt because of my cerebral palsy, as I’m sure everyone here has, but I am thankful that I did not give up. If I had, I would not have the chance to do so many wonderful things.

Admittedly, the scariest part of this trip has been wondering how people will react to my walking. But everyone I’ve met so far has been very accepting, and they are quite literally happy to lend a hand when I do need a little help.  Sometimes it can be a little frustrating to deal with, but when that happens, I try to jump deeper into my new life here. During the four weeks I’ve been in Australia, I’ve had a fantastic time. I’ve learned about a new culture and made friends from around the world-places like Malaysia, Singapore, Bali, Dubai, the Czech Republic, and of course Australia. There have been quite a few moments where we have been “lost in translation”, but there have been plenty of laughs as well!

When I first arrived, the dormitory I am living in hosted an orientation week for new residents before the start of classes. I participated in a lot of the activities, including several themed parties and a trip to an amusement park where you could pet kangaroos! I even learned a choreographed “fresher” group dance that all the new residents performed in front of the school. To be honest, I have always wanted to be a part of something like that. At home however, I never had the courage to because I was always embarrassed of my cerebral palsy. But I decided that I did not want to limit myself during my semester abroad and gave it a fair try. Admittedly, keeping up with the steps was difficult and I was far from the best dancer, but I did learn it! It was a lot fun and I am happy I participated. Despite my lack of rhythm, I felt part of the group. And I never thought I’d be happy to dance!

The last few years of my life, but especially the last few weeks I’ve spent abroad it have showed me that you can really LIVE your life, even if you have a handicap. Yes, there are some things that I will never be able to do physically, but I can push myself in other ways.  Not many American students can say that they’ve lived overseas, explored beautiful Australian beaches, or trekked through a tropical rainforest. And not many can say that they are fulfilling their career goals by applying to medical school in a few months, but I’ve done all of those things, and I have cerebral palsy.

I hope that my story inspires those of you who are in the same less than positive place I was a few years ago. There are better days ahead, and they will only come sooner if you start searching for them.

Thanks for reading,

Amanda

Cerebral Palsy Awareness Day

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Hi All,

I am happy to be writing to you all today, what a great support system there is online for people with CP–I see it on twitter, on facebook, on blogs–CP is everywhere!

I have been going through a lot lately, between traveling, midterms, and getting botox injections into my Achilles tendon the other day–I feel like life never slows down! Maybe that is a good thing, it keeps me on my toes haha. I sometimes find it difficult to be super present on the blog so far this year, I just get a little burnt out on social media and always being connected. I hope you understand. I am just starting up again, blogging for UCP of Orange County, so that’s fun! I talk about being a college student and what it is like having Cerebral Palsy.

Check out their blog on my blogroll column to the right!

A cool surprise happened the other day– my little piece on the TV show “Live Life & Win” aired again over the weekend! I received some great emails and such positive feedback from viewers. That was very exciting for me. I am so proud, yet I feel like I am in such a funny position because when it all comes down to it, I’m just a normal girl who just got the chance to be on TV! (If you haven’t seen my little debut, go ahead and scroll up to the video blogs tab and it should be on there somewhere.) So thank you to everyone who has reached out to me recently, it makes me so happy. :) And thank you to my TeenCP friends for your support as well, this botox procedure has not been the easiest. I have a cast on for the next few weeks that is not very comfortable and my muscles and nerves are screaming at me, to relax. I’m sure many of you know what I mean! I appreciate all of your kind words on the facebook page for TeenCP–you bring a smile to my face when no one around me understands.

I would like to take note of it being March 25th, Cerebral Palsy Awareness Day all over the world! What an empowering message we can send–that today is a day to celebrate our progress, to remember those who have lost their lives to CP, and to be proud to have this disability in a society that is not always as forgiving and as understanding as we would hope. But maybe we have special days like today that is dedicated to CP so that all can be changed for the better. It is our chance to tell our story, to educate the ignorant, and to empower to timid. Ask yourself if you have already made an impact on someone’s life with your CP, I am sure you have even if it is something small! Then ask yourself what more you can do to make a greater impact on your own life, and maybe even someone else’s. No one is stopping you for being you! I wish that you all can have a happy, safe, and healthy 2013 and that you can say you are proud of who you are. Life is is hard, no doubt–and it’s even harder with CP. But life is about learning, about growing, about your attitude and your perspective…so what will it be today? I know I am having a rough day today with my casted foot, but I still smile because I know that I am doing this to improve my CP, and eventually walk better. To show others that they can always strive to improve, too!

Take care all, Katy

Learning how to “vlog” (video blog)

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Hi guys,

I needn’t write anything today because it’s all right here–watch my latest youtube video update if you can spare 5 minutes! Thanks for tuning in, have a great weekend. Enjoy. :)

-Katy

 

TeenCP video blog Feb 2013! Katy Fetters

TeenCP in Argentina!

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Hi All,

I hope the month of January has treated you well. I know 2013 has been off to a crazy start for me! I spent the first 3 working on a project in Buenos Aires, Argentina with a small class. We built an adobe home…among many other things! What a life changing experience that was for me on so many levels. I will definitely be posting more soon…. But for now…

This is a brief post about my experience abroad that I wrote for an academic blog which showcased our efforts! It had a word maximum, otherwise I think we all know I would’ve said more haha.

You can also check out the blog I put together here… who knew four years of blogging would come in handy! :)

http://learningcluster-argentina2013.blogspot.com/

Katy Fetters, Class of 2015

Walking the Streets of Buenos Aires

I didn’t know what to expect when we arrived in Buenos Aires, but I prepared myself to do a lot of walking. I had just bought new nike running shoes to do all my walking in as much comfort as possible. What I noticed immediately was that the sidewalks were so poorly paved, I had to watch my every step. There were large cracks in the pavement, uprooting trees, large piles of dirt, glass, and concrete just lying off to the side of the walkway due to the constant, ongoing construction. The reason I was so conscious of the sidewalks and streets in Buenos Aires is because I have Cerebral Palsy, a physical condition that affects my balance and coordination skills in my legs. I can get around pretty well, but when I know I have a full day of walking ahead of me in a foreign city, it can feel pretty daunting. As we began walking around the city and seeing all of the different and beautiful types of buildings, I tired easily but I didn’t want to miss out on anything! I just accepted the fact that I just had to do the best I could do with walking, and remain conscious of my physical health. I always had to be extra careful in certain areas where road construction and development was always at work. There were certainly nice areas of the city that I found very pleasant to walk around in, but that was not always the case.

The neighborhood we stayed in has uneven sidewalks and I felt like it would be a death trap for someone with CP or any other physical disability that inhibits walking abilities. This awareness led me to really question the attention toward people with disabilities in the city, and if they even have access to easy transportation around the city. Mobility is always an issue for someone with CP, so I began to wonder what type of system was in place for accessibility and mobility for people with physical handicaps. I started to look for handicap signs for parking, or buses, subways ect, and only saw a grand total of 3. Yes 3 handicap signs… I noticed one across the street from our hostel for a larger parking spot, one on a widened bus door, and one on a restaurant’s walkway ramp. With that said, I was not impressed. How frustrating! What type of government can allow such real issues go overlooked? It made me think: What if someone was tragically restrained to a wheelchair one day but had lived their whole lives taking the subte to work, school, and home? They simply could not live in Buenos Aires any longer due to their condition. Part of me was very quick to assume that the government just doesn’t care. They don’t want to invest the time, nor the money to give the disabled community the freedoms they deserve. The other part of me is willing to question if the government and the people of Buenos Aires simply just don’t know about disabilities.Our class interviewed with a young woman who, like me, is also 20 years old and is in college. I asked her how the majority perceived peoples with disabilities and she kind of dismissed my question out of ignorance for any solid answer.  Once I realized this, I wanted to know more about any government or social action put into place concerning the rights of peoples with disabilities in Argentina. Here in the United States, we have the ADA, or the American’s with Disabilities Act of 1990 that gives peoples with all kinds of handicaps the civil right to accessibility, education, service, independence ect… However, the only really solid piece of information that I came across was a conference on international action for disabilities. It was held in 2005 at the US Congress in which Argentine government representatives participated and declared their awareness of issues pertaining to this topic. No action was put into place at that time, and after having gone to the nation’s largest city, I still can’t help but wonder if anything or anyone will ever change….

My TeenCP New Year Resolution

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Hi all,

I hope everyone had a great holiday with their families and friends! My family and I always keep it pretty low-key here, we just enjoy spending time with each other because we all are so busy with our own lives these days that it is rare that all six of us are together. :)

Anyway, I was thinking I’d share my New Years resolution with you with only a few hours left of 2012. If you have already  seen my latests video blog or “vlog” then you know that I have a slight stress fracture in my CP foot which means I will need to be off my feet more from now on since this will be my 2nd fracture in nearly 7 months! (For links to my vlogs, see above headings on homepage!) So with my physical health in mind, I want to make it my goal for 2013 to learn how to swim. I know it will be a better alternative than running for cardio and it is low-impact so my feet can be happy again! I am looking forward to feeling healthy once again and taking care of myself in the meantime. As of now I am going to focus on stretching and wearing my brace at night so I can relieve some of the pressure in my foot so the fracture can heal. Maybe I can avoid surgery this time around but only time will tell! Do any of you guys swim? What do you think?

I am leaving for Buenos Aires, Argentina in a week  for a research course and I am a little nervous about all the walking I will be doing, but I just bought a nice pair of nike shoes to bring with me and had insoles for my shoes made custom to my feet. I think that will give me as much comfort possible during my travels in the city. Me and my colleagues will be conducting research on sustainable housing and urban development in comparison to housing developments here in Orange County, CA–it should be a great project! During our stay we will also attempt to build a sustainable structure out of adobe bricks and other recyclable materials. I will be creating a blog for the course along with the others so maybe I will put up a link to our work for those of you who are interested!

I’ll be back soon– Take care! Have a safe New Year celebration! Cheers so a happy and healthy 2013. :)

-Katy

P.S. I am still taking guest bloggers so please contact me by email (see above column) if you are interested! Thanks, TeenCP.