Join us on Twitter for #CPChatNow !! (And Guest Blog on TeenCP!!)


Hi Everyone! Katy here– I know it’s been WAY too long…

But I am trying to get back into the swing of things on TeenCP now that I have officially graduated from college! (yes I am no longer a teen– but 23 is still cool right?) Anyway, I am going to be on Twitter next week to answer any questions you may have about how to introduce your CP to the new people we meet in daily life.

All you have to do is:

A) Have a Twitter account

B) Hashtag #CPChatNow with any questions you have regarding our topic of the night:

“Introducing Your Cerebral Palsy When Meeting New People”

C) Tag me, Katy @teencp if you can, so I can answer your questions more directly

D) Have fun!!

P.S. If you don’t have questions specifically for me, please still join in for the last hour of open discussion where you can bring up anything that’s on your mind about your experience with CP. That’s what this is all about!

You might be wondering– What is CP Chat Now? Or who is behind this awesome social movement? Well look no further than this link!  What is #CPChatNow?

Thanks Zachary Fenell & Blake Henry for starting this Twitter chat for the CP Community, you guys are awesome and so dedicated to creating such a unique space for us all to connect with other people like ourselves! I am so excited to host your next Q&A session, I am so honored you thought of me to do so!

Lastly, I hope to be on here more often, my friends. If you would still like to guest blog, I will now be checking regularly and can help you tell your own story with CP. It would be a huge help if you could please fill out this contact form (even if you already have) so I can get more organized and start posting new content from all of YOU, my TeenCP peeps!! I think everyone is ready to start reading some exciting stuff. :)


To Surgery…And Beyond!

Hi TeenCP!! I’m so excited to be back and writing about my latest excitement. I am now finishing up the final months of my freshman year of college and have been introduced to the medical opportunity I’ve always dreamed of!

All my life, I was told that I had Spastic Monoplegia (a.k.a  tight muscles only in my left leg, complete with a limp, and balance problems that were given to me shortly after I was born) But a few weeks ago when I visited with a new surgeon, I was given a new look into really how my leg muscles were moving. It has been my goal in the past few years to reach my full potential physically and now, I was finally getting what I saw as the chance of a lifetime. Back in January, I did a “Gait Analysis” at a special lab in New York City. From this, the doctor would be able to see how exactly my muscles move and then decide what course of action to take so I can walk as well as possible That day was actually pretty cool-therapists covered my entire body in little ball-shaped sensors and used 3-D Motion Capture cameras to film me as I walked back and forth across the room. It was unlike anything I’ve ever done before, and what was even more awesome was the fact that I was utilizing the same basic technology that filmmakers use to shoot movies like The Polar Express. (Fun Fact: That’s why Tom Hanks looks extremely similar to his animated character!) As it turns out from the results of the gait analysis, my Cerebral Palsy can actually be considered “asymmetrically diplegic” because my right hamstrings an adductors are also abnormally tight. It was definitely a shock to have my diagnosis changed a bit after 19 years, but to be honest, it didn’t really bother me! Just hearing that a doctor could help me walk better was basically some of the best news of my entire life. Yes, I am actually excited about the surgery that I will be having at the end of May.

For the sake of keeping things “even” both of my legs will be operated on. My hamstrings and adductors will be released, meaning the doctor will “snip” them allowing them to relax. Together, this will not only give me better flexibility, but also prevent “scissor gait” and the turning in of my knee on my left side. Also, my left achilles tendon will be lengthened (by cutting the outer sheath of the muscle, allowing the tendon to expand) and this will help me walk “heel-toe” with a more regular stride. In total, five of my leg muscles are going to be operated on, and surprisingly I will be leaving the hospital with the ability to walk (using a walker), a short cast on my left leg, and splints to wear at night while I sleep. There’s going to be lots of Physical Therapy involved (of course) but I look at the process with a “no pain, no gain mindset” This Jersey Girl is hoping to be back on the beach as soon as I get my cast off…even if it means trudging through the sand with that new walker of mine! (How’s THAT for PT??) Also, I’m hoping to be able to eventually go ice-skating and zip-lining (two things I’ve never been able to do but have always hoped to try) once I gain my strength back! I like being able to look forward getting on the rink at Rockefeller Center or climbing to the top of a tree then flying through the air. It may sound a little crazy, but no one ever said that when you have CP, you can’t do these things!!

Since I’ve gotten the news that I’m finally able to have all of this surgery, I’ve done a ton of reflecting. How are you supposed to react when the thing you’ve dreamed about your entire life suddenly comes true? I now feel this awesome new sense of confidence and readiness to take take control of my body that I hadn’t necessarily recognized during my high-school years, and I think that’s one of the reasons that I’m not anxious about what’s in store for me. Maybe to those of you who have gone through this process before, I could be sounding slightly naive…but I can’t imagine being afraid of a medical  journey that basically encompasses all I’ve ever wanted for myself. One of my favorite quotes is, “Worrying is like a rocking chair, it gives you something to do, but doesn’t get you anywhere.” I know that with  all the support I have from my family and friends, lots of determination and a couple of chocolate milkshakes, I’ll be able to conquer this journey and come out not only feeling stronger physically, but mentally as well. Throughout my teenage years, I’ve learned that the difference in how you feel about yourself and your future all depends on how you look at things. More than that, I’ve been re-inspired to never lose faith that everything will fall into place. Just thinking about the day when I’m completely finished with my rehab and walking in a brand new way gives me butterflies-it is all the motivation I need!!!

Keep on keepin on guys!! :)


Cerebral Palsy & Fulfillment

iphone 063

Lance Pounds is a Law student in Boise Idaho. He has consulted for Oregon Health and Science University as a disability advocate and interned in Washington D.C. In his free time, he likes to hike the foothills near downtown Boise and travel.

This article on TeenCP is about fulfillment in the lives of young people with Cerebral Palsy. I believe it is vastly important to reflect upon our own lives at any age, but especially during young adulthood because there is always something to be learned or gained from any struggle that we face. Many of us with CP at times, have had some significant emptiness inside of ourselves and do not know the reason for this. When I speak of fulfillment, I do not speak of fulfilling employment or an intimacy that is shared by a partner. Many people, disabled or not, have those fulfilling aspects of their life and still feel a kind of dark emptiness. Fulfillment is a life affirming and wide reaching essence that (1) builds up our self-esteem and self-worth (2) makes us content and happy in any stage in life through the self.  In the way I speak about fulfillment, it cannot be achieved through material or relationships; but instead; we find fulfillment through an intrinsic motivation that urges us to search for people, places, or things that will help us feel fulfilled by allowing us to have an identity in them. It is the ability and the will to choose. Perhaps, this comes from building a digital CP (online) or actual CP community that we can become a part of to gain a sense of our self-identity.

It is safe to say that everyone feels powerless or misunderstood in his or her own life at some point. We, as humans, may experience our own set of insecurities; ours might just stem from our disability. The irony is not lost on philosophers or social scientists that it is natural to feel that when we get everything we want, we seem to want more of it, or want what we cannot have. But this essay is not about a critique of modernity, or psychology. It is meant to be a guide for people with Cerebral Palsy who do not have the luxury of living inside the norm or even, with independence. This guide points to a community of peers, like this one here and many likes TeenCP. We cannot resort to society’s definition of fulfillment because we are not fully ingrained in society. It is a literacy all of our own creation and application. We can, however, make our own crippled community and feel fulfilled  within this community of people with CP.

Walking differently, experiencing difficulty with speaking, being dependent on a mobility device such as a wheelchair ultimately sets us apart with each difference, however small. Most of us are dependent on some others for some kind of care. Most of our friends and family members do not have these types of significant impediments in their own lives and can only understand what we go through to a certain degree. What kind of life can we achieve if we are dependent on others for survival?

Not a very promising one—at least that is what many people might think. I believe otherwise. I know it is possible to function in life, and be happy and successful! For hundreds of years, people have judged, mocked, and deemed abject, those who do not appear or move with the same amount of symmetry and precision as other human beings.  One would think that with the 20th century advancements in medical technology, this bias towards arbitrarily notions about able-bodies vs. limited bodies would be discarded in favor of a kinder philosophy but it is not. It is easy to feel different, to feel inadequate, weird, and frustrated about our bodies because we were raised in a world where people with disabilities are not held with the same regard as anyone else who does not deal with any sort of difference. These societal norms and ideas about “lesser” bodies hinders a healthy development of self-esteem and self-confidence that one hopes to attain into their adolescence and well onto adulthood.

Self-actualization may not be realized or attained as easily when the person has a physical disability which cannot be changed or made better.  How do we define our lives when doctors view us as unfixable beings? We are in possession of  weak bodies that last for an indefinite period of time? Doctors provide magnificent services that allow us to be more independent; yet, in my opinion it is hard for them to look at the disability and the person co-dependently of each other. Some parents worry too much, some parents don’t worry enough—and it becomes more and more difficult to gain a healthy about of happiness when we are constantly in conflict with ourselves and those around. Sometimes, our caretakers who want to help their child develop into an independent, self-sufficient being actually impede on this period of essential growth and do not let their child learn how to deal with pain, struggle, and conflicts. While they have our best interest at heart, we must learn how to survive on our own no matter how hard it might be for our loved ones to just let go.

This is also why finding a community that embodies those same traits, goals and occupations is so vital to one’s fulfillment with a disability like CP. One form of learning is through experience. Therefore, learning and listening about what others have done before you may help us understand where to find our own sense of strength, confidence, and fulfillment.  My college experience was less than stellar because no one moved the way I do or spoke the way I speak. College is an introduction to finding one’s self. I found that I was lost. There was not a single person in the small Christian college that I attended that was spastic or ataxic.  I did not experience fulfillment because there was no community that could help me provide that. That emptiness that I first spoke about was very much a part of my life during college. I could not escape the glaring and overbearing normalcy. I needed to find my own CP community.

A community of crips not only allows us to be part of a norm, it helps us create our own set of norms and tendencies that everyone else experiences with their own bodies. After college, I floated around aimlessly, still reeling from what happened in the college years. I finally took an internship at a disability rights organization in Washington, DC.  It seemed like it was a logical thing to do.  During that time with the disability community, I was able to heal. The problems that I faced with speech and walking was match by co-workers speech and walking. By seeing them struggle in the same way, I was able to validate my own struggles. Sometime, I was caught staring at others who were struggling, and remembered the people who stared at me when I was struggling. I had done the same as the people who I learned to despise. Empathy, understanding, was working. It was cleaning out the tender and sore spots that allowed for new and healthy growth.

This type of community like the one in which I worked with, felt like a luxury but it also meant that I could experience happiness, fulfillment, and be an integral part of a group of people who understood me. It is not available everywhere, especially in rural areas.  If you have the fortune of having a United Cerebral Palsy affiliate organization in your area, there is no reason not to connect with them.  The same goes for other organizations such as Independent Living Centers which provide a clearinghouse for issues on employment, housing, and other services that are needed for independence. If you are a parent with a child with a disability, and that child is struggling with issues of self-esteem or social skill, you are not a bad parent. They need to see others like themselves to develop a healthy self-worth. The sense of belonging can erase self-loathing when there is nothing else that can.  Put frankly, being in a community of peers is the easiest way to discover fulfillment on some level.

When this luxury of community is not available, it might be a hard road ahead. Entrapment does not only stem from physical inability but also, social isolation.  Someone might not even understand what self-advocacy is about. It takes an enormous amount of empathy, and courage to give others grace when they unintentionally or ignorantly do something hurtful and you do not understand why.  Take my example: If a person with a disability has stared at other person with a disability it is harder to understand why someone may stare at the way you move.  This is not a problem that is easily fixed or remedied. It is a process and we all should be a part of this process because we can all provide awareness and education because we all experience CP differently.

If anything, there is always hope for those who cannot easily find and connect with a community of disabled people. If you are on this site, it means that you are looking for people that have the same or similar obstacles as you have. YouTube videos, PWD (persons with disabilities) blogs, and other forms of social media can never replace human interactions but it can provide a sense of comfort for those who need it. With all of this technology rapidly increasing and becoming increasingly popular, it is easy to stumble across YouTube videos or read blogs where you can laugh, cry, and talk with others who know exactly what you are going through on that day. These types of interactions help us all gain a sense happiness, and self-fulfillment that could not be provided elsewhere. Additionally, these websites and blogs can help inform society about how disabilities affect the body, and how everyone deserves and desires to be treated with as much normalcy and humanity as possible. This can be life affirming and we gain a certain amount a satisfaction in our life by going online when we cannot interact with our others who experience our own condition.

Let’s continue the journey. -Lance

Study Abroad, #CPChatNow & My Radio Podcast!

iphone 114

iphone 091

Hey all,

It’s been too long since I written something substantial for the blog, wouldn’t you agree? I’ll admit, sometimes I see it as a chore, as something that I have to squeeze in my day; however, over the years I think my intentions for the blog have evolved, and it has become less of a daily diary, and more of a place where I can be of service to others, and share other’s thoughts who are searching to make those connections that I searched for in my teen years. I’ve learned that I just cannot force myself to write as often as I used to. While I enjoy it, at times it feels better to go outside and explore, be with my loved one…or simply just write my thoughts down in my personal journal, sit and listen to music outside and tune out whatever is going on in my mind that day. It is the experience of release.

Since being in Barcelona, Spain for nearly three weeks now I have begun to adjust and grow my own sense of familiarity in a new culture and language. In short, I am living with a wonderful host family and will be in Europe for the next few months, taking classes toward my Liberal Arts Degree at the Historic Universitat de Barcelona. I can’t recall when this institution was formed, but I have a feeling it is many centuries ago, long before the birth of my homeland! As you can see above, its Hogwarts-esque…how lucky am I to get to experience such a beautiful place! It is challenging of course, but I am growing used to being more focused, independent and just “okay” with the fact that I this is all new and there are going to be better days than some.

In a silly way, I am proud of myself for coming this far in life– I found a cliff (see above) on the coast of the Mediterranean Sea (wow!) this weekend in Port de la Selva, and I stared in awe of the beauty in front of me; halfway across the world from my family and home. I expected a tough arrival, but so far I am pleased with my level of spanish and how much I enjoy this city. I am able to get around pretty well. I brought my orthopedic walking boot for longer days, but I am only a 15 min walk to my school or a short ride on the metro. I was worried about how much I would have to walk because my foot is super tight lately and gives me trouble from time to time from my most recent fracture last year. But I am doing alright…although, It doesn’t help my body that I went from a solid 80 degrees in sunny California to a windy 50 degrees and rain, haha but like I said…I am adjusting! I actually went for a jog yesterday to this park nearby to do some stairs and situps ect… it felt good to get my heart rate up a bit in the crisp air since I got pretty sick over the holidays. It’s also been a little strange living in a big city, and it’s probably a cultural thing… but so many people STARE at the way I walk, to the point where some people stop what they are doing to take a good look at me as I walk by. What’s funny too, is it’s a lot of old people–you’d think by their 70’s they wouldn’t think twice about other people’s bodies. And really, I don’t mind it haha I find it pretty funny actually because it’s like the people have no shame here; they are curious and definitely want me to know it! I feel like especially being a young woman (I probably look foreign too) I stand out even more having a disability. It’s like people are confused why someone like me, would have CP and walk weird. That’s what makes it all feel pretty ridiculous to me. It’s like they’ve never seen someone limp before! I do have to say though, this city is VERY accessible. at almost every metro there’s an elevator, and I see handicap signs everywhere, the roads and sidewalks are clean and paved. It made me very happy to see. :)

Well, enough about me…how is everyone doing? What’s new in the CP community? I’ve really been enjoying these #CPChatNow Twitter nights every Wednesday (8 PM EST) check it out on Facebook here! It is a great way to really start stimulating awareness about the universality of CP. I think people are not only establishing great relationships, but really drawing attention toward the cerebral palsy community and how each and every one of us live our lives. It is so important to educate our society about CP, and this is such a wonderful tool to do just that. Thanks for creating this awesome virtual meeting place of ideas and feelings, guys!

Lastly, I totally forgot to post my radio interview podcast on the blog!! I put it on the TeenCP Facebook and Twitter but I never got around to sharing it with the rest of my friends. This was in November, and I was fortunate enough to have the opportunity to chat with a local radio station and co-host with UCP-OC President Cathy Collins. What a cool experience!! I felt pretty nervous, but I had a lot of fun and I got asked to intern with the station this upcoming summer! If you have a chance to listen to it (it’s a morning coffee and breakfast feel) please let me know what you think. click here to listen and choose United Cerebral Palsy of Orange County. Thanks for having us on, Scott and everyone at The Friendship Show!

november iphone 039

Before I go, here are some pics of my uni!

Have a great night everyone. :)


iphone 021

iphone 440

iphone 439

Getting back to it…in Barcelona

1514429_10201982017765341_179960384_n (1)

El ensanche, (the expansion) near the Plaza de Espana in the center of Barcelona. What a view, I am so taken by this city,

Hi everyone!

Happy 2014–I hope everyone enjoyed their holiday and feels ready to take on a new year of school, work, successes, and discoveries. I know I am!

Just a quickwrite for now–

I am getting back into the swing of things after a nice break, I was pretty sick for most of dec-jan but I am back in action, and out of the country! I’m adjusting to life here in Barcelona, Spain for the spring so expect more content to come your way! I just got past my jetlag, and am improving my Spanish everyday since I am living with a host family. Thanks for all of your comments, thoughts, messages, and inquiries. I plan to spend some time responding to all of your emails, but I appreciate your patience. :)

Please, if you haven’t already, “like” the TeenCP Facebook page here for more frequent updates, thoughts, discussions, and pics of my journey in Europe!

Take care, Katy