So I had to do a speech for my health class, and I figured I might as well do it on CP...since I had the ability to be mine own visual, it made it even easier. :P So have you guys ever spoke about CP? I spoke to a class of freshman I didn't know...I got a nervous once, and swore once LOL, but it came out good. :D I recovered nicely from being nervous, and no one noticed. :P Then I did some Q and A at the end. I didn't include much medical knowledge, as I didn't understand much of what I read--but I did learn some stuff. So I'm happy I did it. It was a good experience. And the whole speech came from the heart. Anyone here ever speak about their CP? To a class, to other people, etc...what did you think of the experience?

Hey,

I haven't spoken about my CP in class yet, but I am planning to because I hafta take a class called "People with Disabilities" and figured that would be a good time to talk about it. I'm going into a field that deals with CP a lot so it will be good for the others in my class to hear about it and be able to ask questions. :)

Also, my sister actually talked about me and filmed some stuff for one of her classes...she said everyone was really interested and asked a TON of questions...plus she got a good grade (Am I a good sister or what?) :D

I don't think I could ever talk about my CP in front of anyone. Although I'm learning to be more comfortable with myself everyday, I don't think I will ever make it to the point to publicly expression my knowledge and feelings about having and living with CP.

I don't think I could ever talk about my CP in front of anyone. Although I'm learning to be more comfortable with myself everyday, I don't think I will ever make it to the point to publicly expression my knowledge and feelings about having and living with CP.


I know what you mean to a certain extent....I wouldn't want to talk about it in a class where I don't know the people, or it wouldn't be appropriate, or I know the people would just sit there totally uninterested. But it my case, I know most of the people in my class and am friends with them, and it also applies to the content of the class, so that makes me a lot more comfortable. Like you said, you just have to learn to be comfortable with yourself!

I haven't spoken in class, but I've told close friends about CP, and they are always very interested and want to understand as much as they can. You don't think you could talk about CP even with your really close friends??

Not really... well, not to any group of people. I've been pretty uncomfortable with it in the past, but I am working on a testimony that incorporates disabilities, so I will soon!

I was a little nervous at first...so then I just like tossed my note cards on the table and flew by the seat of my pants. :P And I felt a lot better. :D I got a really good response from the students...it was amazing. :D I had my doubts at first, but it was definently a good experience!

Midget--I spoke about my CP once in a college class at Iowa State University called "Educating Exceptional Persons". I took the class and it was full of prospective teachers and others who didn't know what they should know about disabilities. They asked me questions like "how do your friends/dates/employers treat you?" What accomodations did you need in high school and at college? How can we best help disabled pupils etc. All in all it was a great experience, and even though it wasn't my idea (it was the prof's), I'm glad I did it. Cheers to you. I was nervous too, but the more you do it the better it gets. I didn't know too many in the class either, but I figured they wouldn't bite, and my red face only lasted 2 seconds. krisk

That's cool...:D I think I would do it again, if asked too. Would you?

Yes, I would do it again. Sorry it took me awhile to answer. I'm a newbie who is just figuring out how to post. You have alot of courage to get up in front of those people, which is great. Keep doing it. You know what they say "no guts no glory", and we can be so proud of ourselves for trying and being successful. krisk

Did you speak in front of adults? I kinda of wonder who's a worse audience - adults or kids? I spoke in a class of freshman, and it was a grat experience. I gave the speech to like two or four adults a few times to practice prior to giving it to the class. But that's really my only time speaking to adults.

You don't think you could talk about CP even with your really close friends??

I don't really have close friends now. I kind of push people away when it comes to talking about me. I don't like to talk about me but I will listen to someone else talk about themselves and try to help them if they have a problem or something. Past experiences about my CP and people limit me from opening up to people in my present life. Since I'm older now and deal with things a little better, especially regarding my CP, I try to open up to people but most of the time it doesn't work.

I know I'm a little off because I have know friends but I have learned to love being a loner even though sometimes it is a bit fustrating to be by yourself with no one to talk to you on a deep level.

I'll willingly talk to people in my cohort that I know reasonably well about it - I have to really, as when we're doing group work it works better...as I don't like saying 'I can only do this bit' without a 'because', in case people think I'm trying to skive. However, the physio student who sat down next to me in one of our joint lectures (who I didn't know) got short shrift when she was asking why I beep in lectures, what was 'wrong' with me etc....I found her rude.

xxx
Swift

I don't really have close friends now. I kind of push people away when it comes to talking about me. I don't like to talk about me but I will listen to someone else talk about themselves and try to help them if they have a problem or something. Past experiences about my CP and people limit me from opening up to people in my present life.
I know I'm a little off because I have know friends but I have learned to love being a loner


I can relate to that. I wouldn't say that I don't have close friends, I just have very few of them...I am comfortable talking with these people about CP, in terms of what it is/what causes it/the symptoms and such, but not about the things people have talked about on this board--like feeling uncomfortable around able-bodied people of the opposite sex, and stuff like that, I guess because I figure they wouldn't really understand why I feel that way. I also like being a loner...it's easier than trying to trust people when you (or atleast I) wonder if they are...embarassed of you, know what I mean? I guess that sounds really negative and pessimistic, but I can't really help feeling that way sometimes.

I do know what you mean when you say that you wonder if people are embarassed of you. I sometimes think like that about my own family. It's crazy I know but it is the story of my life to keep people at bay when it comes to my disability. This way I feel more comfortable around them instead of thinking that know all of my personal business and can use it against me at any time if they wanted to.

You guys have made some really interesting points here. I don't make a point of talking about my CP, because, like any other trait a person has - it has just become a part of me. Actually, I see it as just an *ability* to be set apart from my peers. I have no stopped viewing it as a disability. If people ask me stuff, I will answer them...but I don't make a point of bringing it up. Or if I need help with something, I'll ask someone to do something for me, and if they want more detail - I'll explain more why I am asking them for help...but usually no one asks! :-)

Midget you make it sound so simple for you. I can assure for me it's not. It's like people don't accept that certain things isn't their business to know. Personal things about yourself, you wouldn't just openly tell about yourself and that's how I feel about my CP. It belongs to me, it's a part of me and everybody doesn't need to know my specific symptoms and how much pain I may be in at a given time. Why? you know. They can't do anything about it. It's just people that want to know everything not because they all care but because a lot of them are nosy. I will not give people the opportunity to ridicule me if I can help. Not saying that all people are this way but the majority of the people I have come in contact with, are.

It took me a long while to be able to accept it and talk about...and yeah, I agree...some people might be asking more just out of their...I dunno, curiosity for lack of a better word, then actually caring...I totally know what your talking about! :-)

Hey Write
I am the same way. I only found out about my dx 5 yrs ago and, along with all sorts of treatments and what they are, have had to learn about having/living with CP in my early 30s. Not something I've processed easily.

But I try not to talk much about it. Most people tend to judge and I am not up for a new excuse for them to do so. Unfortunately, most folks think that CP immediately means mental impairment so it takes an enormous effort to convince them otherwise. I choose to capitalize on my strengths and deflect any suspicions. Though the spasticity does not always make me look graceful so I am sure there are more questions raised than I choose to admit.

Prisc1125

Why hide it guys?? The big problem out in medical research right now is that no one is studying the affects of aging on adult CP patients. Why is that? Are we all hiding under rugs or something? We need to get out there and be heard. I for one would like to be the voice for those people more severely afflicted with CP. I want the medical community to know that there are a LOT of us out in the world who could use some better medical intervention for pain management. There is so much out there about children, but as soon as they turn 18 or so then what happens to them?
Why is almost all the literature out in the public arena geared towards children with CP. THe thing is guys if we stay quiet then nothing at all will ever change. If we want to always be stereotyped as having a "mental condition" then we have no one to blame but ourselves. Show the world that you are a fighter and that people with CP can do a LOT!
GIve it a try!

Lastramy

Midget
You are one step ahead of me on the acceptance front. The constant changes in my spasticity alternatively put me into a state of denial and frustration OR momentary glee at having little pain on movement. The latter is too short-lived, however! But it does serious stuff to the psyche and until I can fully grasp it, I guess I will be having this ongoing battle with myself about how to articulate it to others.
Do you find that people are curious? How do they approach the inquiry? Now I am curious!!!

Prisc1125

Some people just come right out and ask stuff...Remember, accepting it is a process, sometimes a long one...but for some people it might be a short one. For me, as I stated before, it was a rather long one...but I've accepted it now...and I'm very happy with myself. Well, I'd like to be taller, but oh well...that's what ladders are for! :) LOL Anyway...don't be afraid to ask questions, to learn, to try things, to try again if you don't suceed the first time, and don't be afraid to adapt and change...thos are all things that have helped me accept my CP and learn to see it as a blessing, not a curse!

I only found out about my dx 5 yrs ago and, along with all sorts of treatments and what they are, have had to learn about having/living with CP in my early 30s. Not something I've processed easily.

I cannot imagine what it must have been like to be diagnosed at that age. I can see how adjusting in your thirties would be difficult. I think it would be much like adjusting to a stroke, since that's all that CP is-- infantile stroke. But, here's the good news! You were diagnosed very late in life for a CP patient. I may be making an assumption here, but I bet your functional abilities are very strong compared to many of us with CP. Not that CP doesn't change as we age, becuase it most surely does. I can empathize with that. However, most of us on this board have never known what it's like to be "graceful," as you described (at least in the traditional sense).

I don't want to minimize your experience, because any functional limitations can be traumatic. I encourage you to meet people in your community who have more functional limitations than yourself. Volunteer at your local Center for Independent Living (they need the help), volunteer to take someone who can't drive on errands, make friends with someone who uses augmentative communcation (and listen to what they say!).

I've found that bringing others with CP into my life (with both more and less functional ability than my own), has really helped me to "get a grip" on what it means to be disabled. I see my friends' acceptance of their CP, and the value that their lives have as disabled people. Through that, I recognize my own worth as a disabled person, and take pride in it.

Rehabilitation psychology is a branch of medicine that focuses on helping persons with disabilities adjust and accept their conditons. I recently saw a rehab psychologist to help me process my increasing pain. I cannot tell you how much it helped. Sometimes, try as we might, we can't get through this on our own.

Most people tend to judge and I am not up for a new excuse for them to do so. Unfortunately, most folks think that CP immediately means mental impairment so it takes an enormous effort to convince them otherwise. I choose to capitalize on my strengths and deflect any suspicions. Though the spasticity does not always make me look graceful so I am sure there are more questions raised than I choose to admit.

How do you know people are judging you? What do they say to you? Is it the staring? Much of what we assume people think about us really has nothing to do with "us." Others stare at people with disabilities because seeing someone with a disability reminds them of the fraility of human life. They look at us, and think "that could be me." Really that's it. How do I know this? Well I've read books that talk about the psychology of staring, I've talked to psycholgists about it, and I've actually asked a few people what they think about when they stare at persons with disabilities.

People aren't generally suspicious, they're curious. That's not a bad thing, and means that they would be open to whatever we wanted to teach them. We're all curious, disabled or not. I'm sure you've felt that same curiousity towards others.

I've never had the experience of someone assuming that I am cognitively disabled, so I don't understand what you mean by the "tremendous effort" it takes to convince them otherwise. Can you elaborate on this? I use a wheelchair, and when I walk I do so very awkwardly. But with all that "going for me," no one's ever acted toward me in a way that would suggest that they assumed cognitive impairment. Do people sometimes set the bar a little lower for us? Sure. But it's our collective job as people with disabilities to show people around us that we can get as much out of this life as they do.

I'm assuming that you are in your mid-to-late thirties. It would be a shame to go through the rest of your life struggling with this. You are the same person you were before your diagnosis, whether you realize it or not, and regardless of your changing symptoms. I assure you that those who love you already know that. You now must find that out for yourself.

Hi NJenn
Wow, so much to respond to here. Thanks for taking the time to share your thoughts.

I officially got the dx 5 yrs ago at the start of what became four reconstructive foot surgeries for spastic equinovarus. Hard as it was to hear and digest, I think it culminated years of symptoms that never really had a name. I had the hand posturings as a child (R side, too) and was teased MERCILESSLY through school. My parents were amazing in their approach to capitalize on my strengths and let normal activity be my PT. I had a metabolic disorder at birth that was late in being dx'd so lots of reading, inquiring, and piecing things together with my doc lead to the conclusion that the lacking O2 from the disorder caused this stroke (as you aptly put it). Since it was caught early enough, the damage was not as great.

For many years I was quite active with competitive swimming, hiking, and long distance running so suddenly I found myself pulling way back at a time when I thought I'd be cruising in life. The necessary reframing has been that drastic for me.

I use "graceful" loosely here to mean that I can compensate enough to make myself look pretty normal, though I do have some stiffness in my hips and hamstrings/calves, some times more than others. Post-surgeries was such a time because the dynamics were different and my gait had to adjust. My symptoms are basically moving targets making mgt quite difficult, and my body does not respond to the usual treatments as expected. When my foot is bad, my gait is definitely not graceful.

Yes, I've experienced judgement -- at the sight of a smaller calf, which is huge for lots of folks, apparently. I wish I could think like you in believing that people are just observing to themselves what "could've been". However, most people where I am are pretty myopic and difference in general is not well-tolerated. They don't do a good job if they are innocently thinking; gawking too obvious.

I realize I need to embrace all of this differently. Years of teasing and patronizing and second-guessing by others in so many ways have done wonders to my self-esteem. With each effort to build myself up, something has managed to make it tumble. Cynicism has taken a toll because of this and I've seen what it can do. To boot, I can be a perfectionist so I don't given myself credit for much. By others' accounts, I've managed to accomplish alot despite, and have some supportive people in my life, but this has been a new test.

Addendum -- re: cognitively disabled:
Well, CP can affect the speech and hearing mechanisms too. Somehow - and I am not sure how or why - there is this association between intelligence and speech/hearing. Put together with motor issues to people unfamiliar with CP, the result can be this judging or assuming. I try to think that it is ignorance at work, but with gawking or patronizing, that thinking quickly changes.
Hence, the tremendous efforts on my part to be taken seriously. Mine is minor enough that it can pass as an accent, but there is some quality in my speech that makes people pause and often judge.

I just learned that the other day, that some people's CP affects their speech and hearing! I had no clue...also, I never knew about the connection to Learning Disabilities and ADHD.