Hey, I was just curious to get eveyone's opinion about the one thing you see as the worst about CP, and one way it is good...

Other than the physical stuff--wearing out at an earlier age, etc. (because I think we would all prefer not having to deal with that :)), for me I'd hafta say the worst thing is stereotypes. By that I mean a lot of people (not everyone, but a lot of people) assume that because you're in a wheelchair or whatever, you're also mentally slow or deaf or something :rolleyes: . I guess a result of that, in my experience anyways, is people will talk to whomever I'm with about me, instead of talking directly to me...like, "What does she want to eat?" ...THAT ANNOYS ME TO NO END.

Anyway, for the best thing I would have to say that it has made me a very positive person. My attitude with a lot of things, including CP, is, "It's not so bad, it could be a lot worse, I have dealt with a lot tougher stuff so this is nothing".

You guys aren't allowed to say the same things as me :p...nah, just kidding, I just thought it'd be interesting to see what you guys have to say!!

:bouncing:

I can't think of any negative things about it actually...but I can think of some good things...:) Firstly, looking back, I realized threw all the adaptive skiing, climbing, etc...my CP has taught me about thinking out of the box. I have transferred this thougth process to my life as a whole. Also, it's giving me the attitude that you just have to try and try again, and never give up...and probably some more stuff I'll think of Later. :P

Love this thread, Steffers! Hope more people chime in.

Here's my shortlist:

Best things? Learning empathy towards elderly people and others with disabilities at a young age, that "thinking out of the box" mentality that Midget mentioned, growing up determined and headstrong because of CP, having people generally remember me, teaching myself how to walk independently when no one thought I could. Free meters and close parking spots are cool too!

Not so good things? That generalized lack of expectation that some people have of me because I am disabled. When I granduated high school, it was my face plastered all over the front page of the local paper (and we all know why). When I graduated with my master's that same local paper wanted to do a feature on me. I politely turned them down, saying that people get higher degrees all the time-- it's really not news. Aging with CP definitely sucks. If I knew then what I know now, I would have treated my body differently in my teen years. I hate not knowing how I'm going to function in my "golden years." Big, bulky AFOs suck, and so do condescending doctor types who know less than I do. The staring and condescending comments are somewhat non-applicable to me in my daily life-- I'm lucky enough to live in a very liberal, "live and let live" city. But, all in all, I think if I had to have some sort of neuromuscular disability, there are much worse diagnoses than moderately involved spastic diplegia.

BTW, here's my favorite quote about disability:

"Disability is not a great struggle or 'courage in the face of adversity.' Disability is an art. It's an ingenious way to live." -- Neil Marcus

How's that for out of the box thinking?

Have a good weekend!

Nicki

Love this thread, Steffers! Hope more people chime in. me too :(

Here's my shortlist:
...having people generally remember me... LOL, that happens to me too...

Not so good things? That generalized lack of expectation that some people have of me because I am disabled. ... But, all in all, I think if I had to have some sort of neuromuscular disability, there are much worse diagnoses than moderately involved spastic diplegia.

Yeah, that's generally what I was saying too, for the good and bad. In a way, though, after I thought about it I decided the stereotypes were a good thing too, because they push me to prove people wrong...I love the look on some people's faces when I do something I'm not "supposed" to able to do, whether it be academic or something like opening a door by myself. :D

I guess this is gonna sound corny, but I'm really glad I found these boards. :) I'd never really talked to other disabled people before, but I think doing so has helped me not care as much about what other people think, and be more comfortable with things.

"Disability is not a great struggle or 'courage in the face of adversity.' Disability is an art. It's an ingenious way to live." -- Neil Marcus


Hmm, that's a good one, I might steal that for my profile...but, stupid question--who's Neil Marcus?

He's a performer with dystonia. He writes poetry, does theatrical performance. He has a nice outlook.

N.

What's dystonia? Oh yeah, I forgot about people always remembering me. :D And I guess I forgot about the low expectation thing, too...but I don't pay attention to the people like that. :D lol

I'd definitely go with the people remembering you - definitely can't skive a lecture :angel:

I think some of the equipment can be a big downer, as I'd give anything to use a plain sports manual chair (blends in, and you see the person), but my new power chair's going to be complete with headrest, lateral supports, extended footplates+ ankle huggers and a pommel (has anyone ever tried one of those, I haven't??? - had kneeblocks before and the pommel feels odd).

I think complex equip makes it even more likely for people to assume you've got cognitive difficulties too.

xxx
Swift

Swift-- I've heard that from a lot from my friends who use power chairs! You are definitely not alone in feeling that way! Funny, I still managed to skip lectures, though. Once, I visited office hours for help from a professor, and she said "You know, Nicole, I don't recall seeing you in class when we covered this last week." Me (thinking fast "on my feet"): "Dr. So-and-so, that's because I walked to class that day, you won't notice me when I walk." Ummmm... yeah.... whatever.

That sounds like quite the ride you're getting... I don't know what a pommel is, but if you explain it to me, I'll question some of my friends who use power chairs. You know, the range of experience with CP is so broad. I've found on this board most folks have more functional abilities. Other boards on which I participate seem to have a more representative mix. I spoke to a woman with CP in person last week who was complaining because she could no longer run around the block. I found it hard to keep myself from saying "If only....." On the other end of the spectrum, I've spent some time working with people with CP who use augmentative communication devices. It was a great experience, and very eye-opening. I wonder if we have any aug. communication users on this board?

Nikki, I know we do, but I haven't seen any of them posting lately. Hopefully they'll come back soon!

A pommel is basically something which is fixed between your legs so that they don't abduct too much (in my case,when my feet are strapped down my left knee turns in like anything, and I tend to sit windswept).

HTH
Swift

LOL...running is over rated. :P Anyone care to explain what dystonia is? :-)

Dystonia is another neurological conditon. It causes involuntary muscle contractions (like spasms but more severe) that cause the body to make involuntary, and sometimes painful movements and positions. I think, but am not sure, it is characterized by episodes of high and low tone. Someone else want to chime in?

"Dystonia is defined as a movement disorder in which involuntary sustained or intermittent muscle contractions cause twisting and repetitive movements, abnormal postures, or both"

It doesn't necessarily have to cause high or low tone - some people with dystonia have normal tone (I think CP and dystonia is a little different though - otherwise it would be a secondary dystonia).

Swift

This is such an enlightening thread!!! Recently I have been feeling very discouraged about my son's disabilities. I feel sad that it seems that he is missing out on all of the normal kid things. He desperately wants to take swimming lessons, which I think will be great for him, but I have serious doubts that he will actually learn to SWIM. He thinks he will become an olympic swimmer. I have always told him he could do anything he puts his mind to, but as he has gotten older, we've had to become more realistic, and make him realize that he does have physical limitations.

Like others have mentioned, it seems that everyone he comes in contact with remembers him, and loves him. People also tend not to talk to him, but rather to me. I just look at him, and ask him the question that they asked me. It's his life, it's his conversation. I have found that people either tend to think he can do nothing, or they expect too much. They think he is a spoiled brat because he has SID and has a breakdown because he is overwhelmed.

He desperately wants to take swimming lessons, which I think will be great for him, but I have serious doubts that he will actually learn to SWIM. He thinks he will become an olympic swimmer.

Swimming lessons are one of the best things you can do for your son. How old is he, and what type of CP does he have? I have spastic diplegia, and cannot swim without using an AquaJogger belt. I want to at least try to learn, and am starting adapted swim lessons in July. I'm an old lady by swim lesson standards--I'm 26! As a kid I was very fearful of water, so the fact that he wants to take lessons is a pretty good sign. He may or may not be able to swim without a floatation aid; you won't know until he takes lessons.
Swimming is the best exercise we can do as CP adults. It's easy on the joints, and allows for much freer movement. By teaching him how to swim you really are giving him a gift that could benefit him thorughout life.

So, he wants to be an olympic swimmer, eh? Well, at eight years old I told my mom that I was going to be the first ballerina on crutches (well I did have the toe-walking thing down pretty well). Ever hear of the paraolympics or the Cerebral Palsy Athletic Association? He might very well be able to compete someday. Don't burst his bubble. If it's not going to happen, he'll figure it out; and like any other kid, he'll be on to the next thing...

I have always told him he could do anything he puts his mind to, but as he has gotten older, we've had to become more realistic, and make him realize that he does have physical limitations.

If he's old enough to ask your for swimming lessons, I'll bet he's old enough to know on his own that he has limitations. I don't think it's something you need to engrain in him. Threre's a fine line between realism and heartbreak for kids.

People also tend not to talk to him, but rather to me. I just look at him, and ask him the question that they asked me. It's his life, it's his conversation.

This happens a lot when I am out with my friends who use augmentative communication devices. When someone asks me a question (ie: what would he like to drink?). I say "Ask him, I don't know." I know it seems a bit rude, but it gets the point across in a much firmer way than you repeating the question to your son. He doesn't need the repeating-- but the person asking the question needs the "reminder."

I have found that people either tend to think he can do nothing, or they expect too much. They think he is a spoiled brat because he has SID and has a breakdown because he is overwhelmed.

I'm not sure how best to handle the SID. I hope someone can chime in on that. I know there are other forums on the web for parents of children with SID.

As for "all or nothing" expectations, I know a lot of us can relate to that. It's funny, you never see people with disabilities on the news unless they are helpless and in need of services, or if they're climbing Mt. Everest on their only leg. Society likes to pigeon-hole everybody. It's as if it's not ok for people with disabilities to just be "people".

Ok, enough from me!

Nicki

Swimming lessons are one of the best things you can do for your son. How old is he, and what type of CP does he have? I have spastic diplegia, and cannot swim without using an AquaJogger belt.

Brayden is almost 8 years old and he has spastic quad cp, although he has pretty darned good function in his left arm. Although he has spasticity in all limbs and lower torso, the right side is more spastic than the left. His right arm/hand is little more than a "helper hand" despite several surgeries. His PT facility has a swim therapy program, but because he is not toliet trained, he cannot particpate, even with a swim diaper :(

So, he wants to be an olympic swimmer, eh? Well, at eight years old I told my mom that I was going to be the first ballerina on crutches (well I did have the toe-walking thing down pretty well). Ever hear of the paraolympics or the Cerebral Palsy Athletic Association? He might very well be able to compete someday. Don't burst his bubble. If it's not going to happen, he'll figure it out; and like any other kid, he'll be on to the next thing...

I got a giggle out of the ballerina story. Recently I asked Brayden what he wanted to be when he grew up and his response was shocking and hilarious. He said "I want to be a pizza man, and a gas station man, and then I will go home and drink beer and watch TV." I wonder if I should talk to him are ambitions. :D
I have not heard of those associations. The only one I have heard about in our area is the Special Olympics, and they only allow individuals with cognitive impairments compete, or at least that is my understanding. His IQ is just above the "MR" level, so he doesn't qualify. I will have to research the associations you mentioned tho.



If he's old enough to ask your for swimming lessons, I'll bet he's old enough to know on his own that he has limitations. I don't think it's something you need to engrain in him. Threre's a fine line between realism and heartbreak for kids.

Unfortunately for Brayden, he doesn't realize when something is just beyond his physical ability. He begged and begged to play football like his older brother. Obviously, there was no way to adapt the sport for him, so we had to explain to him that his body simply will not allow him to play that sport. However, we did find a special soccer league just for children with disabilities. He loves it! I think it was more that he just wanted to play sports like brother.



This happens a lot when I am out with my friends who use augmentative communication devices. When someone asks me a question (ie: what would he like to drink?). I say "Ask him, I don't know." I know it seems a bit rude, but it gets the point across in a much firmer way than you repeating the question to your son. He doesn't need the repeating-- but the person asking the question needs the "reminder."

Brayden also has auditory processing disorder, so the repeating isn't a bad thing for him, as things often have to be repeated several times before he understands, however, it probably does not get the point across to those that assume he cannot hold a conversation.


Brayden is a complicated kid with a great personality and a wonderful sense of humor. Despite his multiple disabilities, he has a wonderful disposition (he has his moments of sadness and anger, but I am sure that is normal) I just feel the pressure of making life all it can be for him, and making the right choices for his as he grows up.

I didn't realize there were multiple impairments, so some of what I said may not be relevant. I was just going on CP alone. I can understand why you feel pressure, but know that just by being an attentive parent and advocating for him, you're doing just fine! I really am a huge advocate of physical activity for CP kids, regardless of their functional level. I think it helps them "just be kids," and can instill healthy habits into adulthood. I'm so glad he love soccer! That's great!

I was a competitive swimmer until I was 9, I think swimming lessons are great for everyone, regardless of disabilities!

My girlfriend (some of you may know her from this board, her username is 'yankeegirl') has spastic diplegia. Because of this, she uses one hand on my arm to walk along side me.

I'd have to say that this "feature" of our relationship has opened an entirely new world for me. Our pace while walking is slower, sure, but if we're in a hurry, I simply carry her or we use her wheelchair.

When we make our way to our destination, we glide along (gosh, her walk is SO sexy), taking the time to "smell the roses." Because we are moving at a slower rate than the rest of the world, I feel like we're in our own little romantic place. When I smile over at her, and she smiles back, I feel like everyone else is missing out on something really special.

If we have a disagreement, we're never storming off from each other. She puts her hand on my arm, and after a few steps, I might put my hand on top of hers, and everything is okay again.

Other couples are really missing out on one of the "best" CP attributes.

Another HUGE plus is that because we go to physical therapy twice a week (it was three times per week), I get a guaranteed handful of days that I will see her, no matter what else is going on in our lives. I can peek around a corner while she's working with a therapist, catch her eye, and be rewarded with her million dollar smile. I end up getting excited and looking forward to therapy days.

I think a lot of people are at a disadvantage, not enjoying half of the positive things that CP has brought into our life.

Wow...that is beatiful...:) Yeah, I tend to move at my own pace, too...lol. I mean, I can get in a big hurry if needed, but for the most part I try not to. :P

I was engaged to someone who had a similar attitude as Stinkydom. It ended for other reasons besides CP (money, families, you know... the real drama). I still have very fond memories of this man, although I'm very glad we didn't tie the knot. I encourage all of the single folks on this board (myself included) to not be afraid to look. People like this are out there, and there really are more of them than you'd think. Just don't shut yourself off to the possibility.

My former partner used to say that CP gave him more opportunities to show how much he loved me. Brushing snow off of the car in the winter is a nice gesture for anyone to do for their partner, but when he'd do something like that for me it meant soooooo much. It shaved lots of time off of my morning, and saved me from potential falls in the snow and ice. It was a better way than flowers and candy to show how much he loved me (cheaper for him, too!).

They're out there... Having that relationship (even with its faults) taught me to never settle for just anyone because of the CP.

Hey Stinkydom, are you a PT? My former partner wasn't a PT, but was very familiar with CP from an academic standpoint-- I think that made a difference too!

Hey Stinkydom, are you a PT? My former partner wasn't a PT, but was very familiar with CP from an academic standpoint-- I think that made a difference too!

LOL, you can call me Dom (short for my name, Domenic) -- stinkydom was just a silly name to sign up with, since 'dom' was taken.

I'm not an "official" PT, but I help yankeegirl through her stretching, etc, so I try to learn as much as possible. I read a LOT about it, etc.

The snow-cleaning thing hit close to home -- we're in the North East.

:)

I have been absent from the board for a while but I have to say that after reading your post about your relationship with yankeegirl I have to say I have missed this place. That post right there gives other people like myself that has CP hope that we may have that type of romance one day. Being a guy its a little different for me but I'm sure I can find a girl thats willing to adjust to my needs.

And if a girl isn't willing to adjust, then she's missing out! Why are people so shallow? Their loss, though, and it's a gain for guys like me!

:)

The worst thing is that with the exception of those very close to you, no one will treat you like you are just another person. You're almost like a thing or a problem. I can't ever just go shopping or just go to a restaurant. It's staring time and special treatment time, like I'm about to crumble onto the carpet. It's everything from eeeeeeewwwwwwww to oh my god, how can I help you, you poor thing??? It's also hard to explain this to people who are not in this situation; even if they want to understand there is no way they could.

The best thing is that with CP or probably any visible difference a person could have, I think it makes you a more sensitive and certainly more mature person. I could never make fun of somebody else because I know what it feels like to be made fun of. Plus I've been an adult ever since I can remember! You know what's important and what's not. You also appreciate all the nice things around you more than the average person does, I think. This is because you don't take things for granted. It's harder for us to get things done and get what we want, so when we do, it's truly awesome.

Yankeegirl,

I couldn't agree with you more on the positive sides of CP. Well said!

Lastramy

Agreeing with yankeegirl, I too believe that living with CP has made me be able to look at all things in positive light first. It makes me more mature than other people that I hang around my age when it comes to seeing someone with type of physical abnormality. They don't understand what that person may be going through on a daily basis because they don't have to live that lifestyle. I on the other hand can relate even if just a little bit because I go through some of my own difficulties.

A good thing for me living with CP is seeing people's reactions towards me when I do something they don't think I can do. I get this unspeakable joy when I can make a person shut up in an instance telling me what I can't do when I know I can do it.

Hi,
I would have to say that the nagitive thing about cp for me is:
1. I have not been hired because of it.
2. People saying, Oh you can't do that!

The best things or should I say blessings are:
1. I can understand peoples differences.
2. it tought me compassion
3. it tought me to try things before I say I can't do it.
4. It saves me a lot of money on bus fare because I can get a discount LOL.

Honestly I can keep going on what a blessing it is rather then a nagitive.

have a blessed day.
DBW

Oh, I didn't even go into the whole employment issue. I was essentially low-balled a salary back in December 04 for a new job. The hiring manager was ahem... educated by my references that inquiring about my disability was illegal. Since the HM knew that I was told about this, they had to hire me or face a discrimination suit. So, they low-balled me by about $15K. That's what you do when you want to get rid of someone, I suppose. Ugh... that was a bad time.

NJenn,
I can totally relate to what your saying. It is my belief to that it is easy to get around hiering someone with a disability. I was told to my face why I was not going to be hired and why......He then said prove that I just said this to you. So, they can get around the law. His word against mine.

The worst thing is that with the exception of those very close to you, no one will treat you like you are just another person. You're almost like a thing or a problem. I can't ever just go shopping or just go to a restaurant. It's staring time and special treatment time, like I'm about to crumble onto the carpet. It's everything from eeeeeeewwwwwwww to oh my god, how can I help you, you poor thing??? It's also hard to explain this to people who are not in this situation; even if they want to understand there is no way they could.

The best thing is that with CP or probably any visible difference a person could have, I think it makes you a more sensitive and certainly more mature person. I could never make fun of somebody else because I know what it feels like to be made fun of. Plus I've been an adult ever since I can remember! You know what's important and what's not. You also appreciate all the nice things around you more than the average person does, I think. This is because you don't take things for granted. It's harder for us to get things done and get what we want, so when we do, it's truly awesome.

I fully agree.

My teachers talk about maturity and how we need to grow up and face the real world...I am in the real world, with a bunch of ignorant people, and I face things that they will never dream of facing. I am mentally an adult, and have been for as long as I can remember.

Gym class is also an obstacle. My music teacher, whom I'm fairly close to, started talking about how she hated gym when she was in school. Since she's the only teacher I've ever cried in front of, that's what I did. I understand that AB's can hate gym, but they need to spend time in our bodies and then appreciate their blessings. Gym is so hard it's unbelievable...and I can't be in adaptive gym "because only those enrolled in Special Education are entitled to that class". I'm in half Honors classes, half regular classes (in other words, I'm fully mainstreamed). For that reason, I can't be in the class I need! UGH...

Positive things: I learned to appreciate what I DO have a long time ago. It could have been much worse. I could be dead. I appreciate getting out of bed in the morning, simply because I can. I appreciate my wealth of medical knowledge (which developed into stories that I've been writing for 4 years), and my ability to advocate for myself.

Sassysweetie,

It's great that you realize these things early - I'm assuming you're still in highschool - are you?

Looking back, I wish I knew then what I know now... I've said it before, I'll say it again - Positive mindset is extremely important since it's easy to get down on yourself over the things you can't do physically and forget about the many times you've overcame overcame your physical challenges and persevered.

I hear you on gym class - I was exempt from that in HS. It's important to realize that in the grand scheme of things these things mean so little. Sure it seems like a big deal at the time, but it really isn't worth the sweat or the tears. The ironic thing is that even though I didn't take one phys-ed class in high school, I'm in better physical shape than many of my old high school friends. Fitness is a huge part of my life now.. I work out regularly at a major AB gym. Sure I can't run the track or play conventional basketball but I can do a cardio workout on the treadmill, ride the stationary bike, do crunches, resistance train, and the list goes on. I shake my head at ABs who use every excuse in the book not to make fitness a priority. Who are they fooling? It comes down to will, commitment and determination.

Now, to get back on topic I'd like to echo the setiments of the folks who posted before me.

The worst thing about CP is the general lack of knowlege not only among the population at large but even among the medical community. I feel that there is a lot more awareness when it comes to aquired disabilities. I'm often asked if I have MS or if I've been in an accident.. I'd have to admit that if it's a person I don't know and I don't feel like getting into a lengthy explaination, There are times where I've said yes to these questions.. It just seems like there is a lot more awareness and less taboo around aquired disabilities... This makes me want to become an advocate for the rest of us.. I often feel like we have no voice as adults and all the focus goes to pediatric care. There is not nearly enough awareness out there as to what we're all about... It's like we're supposed to deal with it and move on -which most of us are good at as it is which is why there is such a lack of awareness out there.. I encourge everyone here, particularly those over 18 - and older adults to participate in studies taking place at universities, hospitals etc. Without knowlege and advocacy there won't ever be adequate knowledge out there.

Sassysweetie, I'm happy that you're writing stories based on personal experiences. If you're serious about it, you should definitely look at getting them published one day.

Now for the good things. :)

A true sense of compassion and understanding for others that the average person can't provide because they can't envision what it's like to not fit the status quo.

The ability to realize the importance of your goals and being more committed to acheiving them.

The ability to realize the fact that your mind and a positive attitude are your two most valuable assets.


F.S

The worst thing about CP is the general lack of knowlege not only among the population at large but even among the medical community.

I completely agree. It's starting to bother me, but I am just now getting to a level where I can talk about CP with other people, even though it's not that comfortable for me. Hopefully in time I will make a good advocate :)

I think the best thing about my CP is that it made me develop my self image really rearly in life. Also, it really gives you perspective on other life problems. A summer in a body cast really makes you think about how bad other things are.

Joe

I am just now getting to a level where I can talk about CP with other people, even though it's not that comfortable for me. Hopefully in time I will make a good advocate

JellyRJFan,

It wasn't until fairly recently that I learned to accept CP as a part of who I am.. It took me a long time to get out of the mold that CP made me a lesser AB. It's pretty easy to get into this rut particularly during your school years when your friends are playing sports and your stuck keeping score. The other part of it is that many of us raised in orthodox families are somehow taught that admitting that you have a disability is not a good thing and that you should try to hide it as best as possible. Does any of this sound familiar?

I'd encourage you to challenge these thoughts as they do nothing to improve your self image... I'd argue that my CP only makes me a stronger more resiliant person. Why not share this with others and let them be inspired with how you overcame life's challenges?

I think the best thing about my CP is that it made me develop my self image really rearly in life. Also, it really gives you perspective on other life problems. A summer in a body cast really makes you think about how bad other things are.

Joe

Welcome aboard Joe!
I'd agree with your thoughts.. How old are you? What kind of CP do you have?


F.S

It's pretty easy to get into this rut particularly during your school years when your friends are playing sports and your stuck keeping score. The other part of it is that many of us raised in orthodox families are somehow taught that admitting that you have a disability is not a good thing and that you should try to hide it as best as possible. Does any of this sound familiar?

^that sounds VERY familiar!

I'm pretty much at peace with my situation, it's just that I'm such a private person and my family NEVER talks about it. It's like it doesn't exist to them. So that coupled with the fact that I can be very shy just makes it hard to talk about, I guess.

Lately my hands have been curling into fists and it makes my joints pretty sore. I can straighten them, but if I'm not paying attention they just tense up like that.
My dad gave me a lecture about how my fingers would "get stuck like that" and that it's "not related to any other mobility issues I have" so I shouldn't be doing it. I wanted to scream that it's CP, not "mobility issues", and that since I am a quad, yes, it is related to CP. It's so annoying! :o

it's just that I'm such a private person and my family NEVER talks about it. It's like it doesn't exist to them. So that coupled with the fact that I can be very shy just makes it hard to talk about, I guess.

So by relating to my first point, you've essentially related to my second point as well. "Hiding" or not coming to terms with your disability only degrades your self-confidence. Personality traits like "shyness" are developed early in life and this more than likely has something to do with it.

Anyway it's not my point to dwell on the past... Old beliefs can always be changed. I've gotten onto this topic in a few of the other threads, so I won't do it again here unless you'd like me to.

My dad gave me a lecture about how my fingers would "get stuck like that"

That's actually pretty funny. :D What was his reasoning behind that one?

Hi all 33 almost 34 (gads) spastic para

You know I actually used to quip that "I would like to hang myself but cant even jump" I was never serious, but at a very tense moment. It always makes everone laugh...especially when some PIA person asks you how its going...

Joe

My baby has CP. He's classified as a CP kid but he actually has several different brain malformations. If I could ask him what the worst thing about CP is he would probably say the seizures. If I could ask the best thing, it would be that he gets a LOT of love and attention from everyone. He's been to a lot of places, more than most kids his age. He's been from the bottom of the grand Canyon (well almost) then to the TOP of the sears tower and he's only three!

Charlotte

I'm pretty much at peace with my situation, it's just that I'm such a private person and my family NEVER talks about it. It's like it doesn't exist to them. So that coupled with the fact that I can be very shy just makes it hard to talk about, I guess.

I can totally relate to that...I guess my parents assumed they should treat me just like my AB sister, which I'm not saying is a bad thing, but they acted (and act) like the CP doesn't exist...now they don't understand why I'm so shy (the whole feeling like a "lesser-AB" thing). I wish they would've enrolled me in a CP/disabled camp or something when I was younger...but, "coulda, woulda, shoulda" I guess :)




Lately my hands have been curling into fists and it makes my joints pretty sore...

My dad gave me a lecture...

it is related to CP. It's so annoying! :o


I've had a similar situation in the past with my dad. I told you guys I just had hamstring lengthening (2 more days of casts, by the way :D), but before that, he would always tell me to "stand up straighter" like I could force my muscles to do what I wanted if I just tried harder or something. :rolleyes: It seems sad to me that my parents, of all people, are...well...ignorant of a lot of CP-related things. Maybe that goes back to their acting like it doesn't exist, like they're hoping they don't need to learn about it or adress it because it will go away and I will be "normal" someday? :(

...he would always tell me to "stand up straighter" like I could force my muscles to do what I wanted if I just tried harder or something. It seems sad to me that my parents, of all people, are...well...ignorant of a lot of CP-related things. Maybe that goes back to their acting like it doesn't exist, like they're hoping they don't need to learn about it or adress it because it will go away and I will be "normal" someday?

Steffers,

It's important to realize that your parents mean well when they say things like "stand up straight" or "try not to drag your feet" I used to get this all the time and truthfully, it helped me realize that with practice anything can be improved.. Sure there are things that you can't really control but do give your folks some slack when they say these things as they do mean well.

There is no manual on how to raise a kid with CP, so more often than not, a parent is left to use their own instinct.. It's a pretty complex task when you take into consideration both the physical and emotional impacts on both parent and child... Fortunately the early years are the easy part. There is a great deal of research and advocacy taking place there. It gets tougher during the transition from childhood to adulthood.

... now they don't understand why I'm so shy (the whole feeling like a "lesser-AB" thing). I wish they would've enrolled me in a CP/disabled camp or something when I was younger...but, "coulda, woulda, shoulda" I guess

I'm starting to think this is a really common problem.. One that I battled for a long time. I did have some contact with other kids with CP as a kid, but the majority was with ABs. Looking back, I really don't see a way around this, I don't want to go as far as to say that mainstreaming is not a good idea. It's definitely good preparation for the real world, but there has to be some balance between between mainstreaming and friendships with other PWDs as they can relate and understand what you're going through.

Steffers, I'm not sure how old you are but I can tell you that my adolescent years were probably the toughest when it came to the whole lesser AB feeling. These years are hard on everybody, it just so happens that having CP just adds to our teenage scruples. In time you come to realize that your true friends will support you through thick and thin. There is really no need to hide or deny anything that makes you who you are.. Hold your head high and use every day to inspire others with the challenges you've overcome!


F.S

Gym is so hard it's unbelievable...and I can't be in adaptive gym "because only those enrolled in Special Education are entitled to that class". I'm in half Honors classes, half regular classes (in other words, I'm fully mainstreamed). For that reason, I can't be in the class I need! UGH...


I was luck sassysweetie, I was mainstreamed too just like you are now with the honor and regular classes but I had adaptive gym. I was glad I had because it was one of the few places I could unwind and be myself without people watching my every move trying to figure if I was "retarded" or not.
It seems to me that if I'm not around other people who have a disability like myself then I can be judged easily as not being "normal" and get teased. I'm so glad I'm college now because I have matured to the point where I don't pay attention to how people look at me and ignore what they have to say about me.

Steffers,

It's important to realize that your parents mean well when they say things like "stand up straight" or "try not to drag your feet" I used to get this all the time and truthfully, it helped me realize that with practice anything can be improved.. Sure there are things that you can't really control but do give your folks some slack when they say these things as they do mean well.

There is no manual on how to raise a kid with CP, so more often than not, a parent is left to use their own instinct.. It's a pretty complex task when you take into consideration both the physical and emotional impacts on both parent and child... Fortunately the early years are the easy part. There is a great deal of research and advocacy taking place there. It gets tougher during the transition from childhood to adulthood.



Eh...I guess I sounded a little more critical than I meant to. I know that they do mean well, and they have been really supportive and everything...I guess I was just complaining about how they don't, and really can't, totally understand what it's like to be disabled, but sometimes they make assumptions anyway. But I know that no one is perfect.

I'm 19, by the way :)

The worst thing about CP I would have to say is the physical and emotioanl pain that can sometimes come with it. One morning i can wake up and my back and legs kill and i can't do much that day. Another day i could be watching all my little brothers go out with their friends, or help dad on the job at a constrution site while I'm at home alone.

The best thing about CP would have to be simply, there's more people just like me that know exactly how i feel. I'm hoping to meet some of those people here :)

James

they don't, and really can't, totally understand what it's like to be disabled, but sometimes they make assumptions anyway. But I know that no one is perfect.

I'm 19, by the way :)

I know exactly what you mean. The other day my dad made me go to the track with him and he kept being like "you're slowing down, walk faster! relax your arms! pick up your feet!" He was practically dragging me around the track (because I usually walk hand in hand with my parents since I don't have any assistive devices... gotta improvise!) :rolleyes:

... The other day my dad made me go to the track with him and he kept being like "you're slowing down, walk faster! relax your arms! pick up your feet!" He was practically dragging me around the track (because I usually walk hand in hand with my parents since I don't have any assistive devices... gotta improvise!)

Once again, please bear with your parents.. I remember many times where I was faced with much the same kind of "tough motivation" and at the time I admit it was no fun.

Now I look back and commend my parents for their hard work and persistence, for not taking "no" or "I can't" as an answer and for instilling in me the importance of being physically fit and active.

It's important to "know your limits but reach beyond them" when it comes to living with CP.. You'll be amazed at what you can accomplish with this frame of mind.

Beyond this, it's also important to live as idependently as possible..

JellyRJFan,

You mentioned that you usually walk with the help of your parents.. Is there any reason why you don't use a cane (or two as in my case) instead?


FS

FS, I see what you mean. But I think with my parents it's more that they just don't GET it.

Yesterday, for example, I was talking to my dad about yoga classes. I was telling him how I went to a "challanging conditions" class, and I thought it was really very difficult, but I was recommended to be in the gentle class, which is even harder. Our conversation went something like this:

Dad- That class is for people with disabilities... you don't have a disability-
Me- Dad, did you hear what you just said?
Dad- well, I... um... let me rephrase that. You're not missing a limb or anything. You do have some disabilities. You have stretching problems and movement limitations and stuff like that.

They just won't aknowledge that I am disabled. I appreciate them trying to keep me active, but they're trying to make me into something I'm not... an AB. And also I'm extremely active at school. I lift weights, do trunk work and cardio almost every day. Just at my own pace.

That's primarily the reason why I don't have a cane or anything. My parents would never say yes to such a thing. Since they see me as an AB they just think it's best for me to walk, walk, walk. Also, my doctor would probably not support me in this either.
I keep up well enough with my family and friends, but that's because NOT keeping up has never been an option for me. So I just keep pushing myself. I may seem like I can walk OK to most people, but they don't see how exhausted I am all the time.
I'm now considering getting a wheelchair for long distances. I definitely think I would help me get out and start participating in more activities. At this point in time I pretty much only have enough energy to go to work, then maybe walk around the block (I live in the mountains, so it's quite a workout) or lift some weights at night. I rarely go out with my friends because I'm so tired. There are even days when I can barely make it across the room. And forget about enjoying (or even going to) places like Disneyland or even the mall.
With occasional use of a wheelchair for long distances I feel like I'll be able to do all the things I can't now. I just have to figure out how I'm going to tell my parents and get a script from my doctor.

They just won't aknowledge that I am disabled. I appreciate them trying to keep me active, but they're trying to make me into something I'm not... an AB. And also I'm extremely active at school. I lift weights, do trunk work and cardio almost every day. Just at my own pace.

JellyRJFan,

Do you or did you ever go to a PT? Maybe he or she can help your parents better understand your challenges and shed some new light that can help step out of their current frame of mind (even if only for a short time at first).

I'm starting to realize that fatigue is common especially with ambulatory CPers.. As much as you've probably heard this before, proper diet is important.. I find that if I skip breakfast I feel lethargic all day.

Also, it's very important that you get enough sleep - ideally 8 hours is good.. I find that if I over or under-sleep... I also feel more tired than usual.. As well a short cat-nap after school or work does wonders to recharge your batteries.. And for the times when thats not possible, caffine (in moderation) works as well.

While I don't mean to be an advocate dietary supplements, I usually have some whey protein after my workouts and I find that this works well not only to build muscle but also to help the post workout recovery.

Notwithstanding all these things, you may find that you still lack the energy to do everything you'd like to do... You'll probably find that some kind of mobility aid (even a cane) will help you conserve your energy.. Have a heart to heart talk with your parents - let them know that this isn't a sign of weakness (both on your part and on their part), but something that will improve your day to day functioning and let you do more.

FS

But I think with my parents it's more that they just don't GET it.


That's exactly what I was saying...they don't get it, but they think they do, and then they don't believe me or it doesn't sink in when I try to tell them differently.

That stinks about your parents not supporting you getting a wheelchair...I know that I definately need to use one at malls and stuff like that. I think what FS said about getting a PT or someone knowledgeable to "explain" CP to them is a good idea. I don't know about you, but I'm the youngest in my family, and part of my problem with the " 'rents" is that, to them, I'm the youngest so I don't know anything, no matter what. (I mean, I can say "I learned _____ in class today", and it will be a subject they know nothing about, and they'll still say "No way, you're wrong", just because it's me telling them something they've never heard before. :rolleyes: ) ANYway, what I'm trying to say is, if you explain to your parents why you need/want to get a wheelchair and they don't believe you or still won't agree to it, getting someone professional who they sorta hafta believe is what I would do. :)