Hi guys and girls,

My name is Will and I was born with CP like most of you. There are a few things wrong with me. A. My legs get stiff very easy. and 2. I use a wheelchair in big place. I'm a normal kid, or well I should say guy i'm 19 lol. But I am normal, I eat, sleep,drive,breathe on my own. Some of you may be familiar with hand controls in vehicles. Well I have 2 of those because I have 2 vehicles. I current own a 2004 Ford ranger and a 1995 chevrolet camaro.

(OH!!! I use a walker too)

I've had one surgey to lengthen my chords, and am on a walker and have been on that walker for .......... carry the 4 ...........9 years now. It indeed does suck something feirce to have people stare at me but oh well they can take pictures right?? lol anyways not to bore you all but yea theres a little about me.

Will

hello Will......I know how you feel I was born with Cerebral Palsy but some of my friends don't know I have CP.....I'm 19, my plans are going to college. I like computer, but I can't type good because my whole left side has CP, I can walk and talk but I have some speech problems, its hard because some people don't understand me good and I hate to repeat myself over and over again. I don't have my drivers lisence but I drive a little but its hard for me because my hand don't stay still long......it will be hard to find a job because of our CP.

When I was born my brain bleed on both sides I was 4 months early, and I do have heart problems, I couldn't breate on my own, the nurses and doctors told my parents that I wouldn't live I weighted 2 pds and 13.

You're absolutely right about it will be hard to get a job. A lot of employers will not tell you that they do judge on physical appearance. I have a light case I'm guessing because I don't have all the vast symptoms it basically just affects my legs. It sucks but I'll get over it.

The sad thing is being on disability with no work record to back you, You stand little chance of being able to make it on your own.

I'm not trying to make anyone feel bad or anything but CP Varies in cases, Like myself and Jennifer's CP cases are different. I think the CP cases are like snowflakes, none have a mate or match.

Wow, you both sound so positive, its such a difference to what i've been hearing from dr's about my daughter.

She's almost 20 months and has cp on her left side, and although its mild and she can do most 'normal' i hate that word!!) things she does them much later than everyone else. They don't really like to talk about her future or what she may or may not be able to do.

It is such a relief to read about you and find out what the future might be like for my Ellie

I might be able to give you a little bit of insight. I have CP and I'm 5 and 1/2 months from 30. Yikes. But that means for now I'm only 29! I grew up in a small town in the mid-west, had a graduating class of about 64 or so and actually went to school with two other kids with CP. How weird is that? Only my left side is affected as is my friend's younger sister, the boy, who is younger than both of us, tried for several years to strengthen and stretch his legs enough to walk but finally gave up the battle and stuck with his wheel chair. We bonded quite a bit, the three of us, since the P.E. teacher took us all aside several times a week for extra exercises. But as we got older and moved on to middle, and then high school our relationships weakened and faded. But that could happen to any friendship over the course of growing up. I still felt lucky to have a reminder that I wasn't alone.
To be truthful, my worst experiences have been as an adult and dealing with many ignorant adults... even doctors! My first real negative experience was my first job. My cousin helped me get a job at Wal-Mart and when I talked to her about it she said that she had told them I have CP. I got angry with her and told her that it would in no way impair my performance and they had no right to that information unless I chose to provide it. I could tell she didn't understand, but I'm not blind to the ways of the world and wasn't at 18. I knew that having that information without having met me first would give them a preconceived notion of my mental capacity and capabilities. I wasn't disappointed. I was hired and promptly made a door greeter! I tried for months, (after being there almost a year) to get another position and failed. I was offered a job by the manager of the convenience store manager in my home town and jumped on it. I wasn't treated different there and stayed there until I had my first son.
My jobs have been varied over the years, some good & some bad like anyone else. So don't think about CP affecting you in that way too much. Some people will treat you well and others will treat you like a liability. You just have shop around.
Doctors are Just as bad sometimes. Pediatric CP seems to be a given. Apparently, after 18 CP doesn't exist. What I mean is there are lots of hospitals and and doctors who specialize in children with CP but almost none for adults. Every time I've been to a doctor as an adult for something related to my CP (or not) I suddenly seem to loose I.Q. points. Pile that onto the fact that there aren't any resources or information on aging with CP and I'm left in the dark. Most of the time I just daydream about showing up at Shriner's Children's Hospital again and trying to trick them into believing I'm 17. What I would wish for in a perfect world would be support for aging with CP and doctor education, (ha, ha i guess a billion years of medical school aren't always enough).
For now I just try to stay upbeat about it all. Being an adult only changes other people's responses to you in certain situations. Take the good with a smile and the bad with a grain of salt. Try to educate whenever possible and don't feel bad about people asking you direct and borderline insulting questions. Ignorance breeds hate and I personally love to answer direct inquiries. I feel it shows character and guts and just plain old human curiosity. At least they won't wander around anymore trying not to ask me about the 'wreck' they think I was in! LOL! Of course. Why else would I walk with a limp? It must have been a horrible car crash! Although, I've had stranger questions than that and have even been accused of trying to have a 'pimp limp!' Oh well...

Thank you so much for taking the time to reply, and your post was such a huge help, i do worry about what Ellie's life will be like and the info you gave was so reassuring.

You said you have a son, if you didn't mind me asking, did you find motherhood harder because of your CP? i realise Ellie's not even 2 yet and thats going to be a while away (about 30 yrs if her dad gets his way, overprotective is an understatement lol) but its a major question i have and none of ellie's medical team have answered it yet, they are reluctant to give me and answers because 'each case is different' i swear i've heard that a million times, it seems to be the only get-out clause they have

I'm glad I can help a little even if it is only personal experience.

Before I say anything else, I want you to know that as much as doctors know they aren't the final authority. They told my mother that I wouldn't be able to use my left hand and I surprised them all by using it all the time. To be fair, I don't have full articulation and I have never been able to lay it flat with my palm side up, but I can use it without any real problems. I just have very little strength in it. Let your daughter find her own limitations like I did and she may not feel the need to push herself way beyond them. And avoid volleyball! I still hate volleyball to this day. I had to twist my body in a weird position so the ball was pointed the right way to serve. I hated the looks I got from my classmates and I never could get the darn ball over the net more than a couple of times.

Sorry... I'm rambling.

The doctors never talked to me about child bearing, but my mother said they told her that because my left leg was shorter than my right and it off set my hips I might have trouble giving birth naturally. My fist son came out the old fashioned way with no more complications than my having high blood pressure. 7 years later I gave birth to my youngest, and last, and had to have an emergency c-section because the placenta had a tear in it and his heart rate dropped too fast. We both could have died, but they got him right out and there were no other problems. My mother shrugged it off and told me it ran in the family and the same thing happened when she had me.

So, all told, before, during, and after I had no more problems than the average woman. I'm sure there could be some unforeseen problems based on the severity and localization of your daughter's CP, but the same could be said of anyone without it. I wouldn't worry too much. I never did. The only thing that annoyed me was all the nurses and doctors, except my wonderful Ob/Gyn, practically grabbing me by the arm and saying, "Now, you know CP isn't hereditary right? There's only a 1 in whatever thousands chance that he'll have it too!" I just furrowed my brow and said that yes I knew that and even if he did it wouldn't matter to me. I didn't wish it on him by any means but I wasn't crying every night thinking I'd passed it on to him. Some people way over react to the strangest things.

Getting a little older has started to become an issue. I can tell my body is aging faster than someone without CP my same age. This made it harder to take care of my youngest boy, but not impossible. I was a bit of a tomboy when I was young and did some crazy things, but I knew my limitations early on and had to watch my cousins do even crazier things from the ground because I knew it was impossible for me. The issue now is that I over used my right side to compensate for the left and now they both want to give out on me. One is over used and the other is under used, but I knew it was coming. It's only common sense that you can't abuse your body like that without it coming back on you. It does to everyone, but people with CP start feeling their age at thirty and up. But we keep on going!

Please don't be afraid to ask me anything. Nothing is too weird or personal, because truthfully, my life has been pretty 'normal' (i hate that word) and CP hardly ever came into it except in the strangest places. And those are usually the ones that count.

I just want to say WOW.

You have answered lots of my questions and helped so much with me dealing with this, untill i started to talk, well type lol, to you i was so worried about everything, stuff that i suppose every parent worries about but its just magnified by the fact Ellie has CP and i therefore feel even more of a need to protect her.

Ellie has this amazing confidence in herself that i never want her to loose, she really is amazing. They told me that she wouldn't ever use her hand and that they were aiming towards it appearing no different to her right side, but she is using it, she can help support her juice bottle and hold a bag of cookies or crisps with it while eating with her right. She's able to pull herself up to the sofa and climb up to watch TV and read, (yes she may only be 20 months but she loves to flick through her books and catalogues) Everyday she seems to learn something new or someway of doing something to make her life easier. She's even started swimming with support!!

I thought i was alone in feeling that the doctors didn't seem to have a clue what to say or do but you have helped me a huge amount. You can only imagine what it feels like to have a peep into your world and see that Ellie's going to be fine.

Do you have any siblings? i'm just wondering if you had any issues if they were born without CP, thats another thing that we worry about, one day Ellie's going to ask us why Willow can do things she's not able to, or can do them faster and our answer is going to be that if everyone was supposed to be the same we'd all have been given CP. But your thoughts would be a big help

and you're not rambling on lol, i hated Volleyball as well, whats the point of it??!! lol

Sadly, I am an only child.

I had my aforementioned cousins that lived right next door though, and to be honest, the issue never really came up. I had to go to Shriner's Children's Hospital twice a year for quite some time and I remember seeing all of the other kids that were a lot worse off than me and realizing I'm not alone and that it could have been a lot worse.

I just called my mom, so I didn't accidentally lie to you, and she said I never asked her outright. My parents were always open and candid when talking to me and reminded me that I should be thankful for all that I could do when I started to feel sorry for myself. Which makes me want to mention something else to you. I could never really find out anything about CP independently. The only books in the library were ones about coping and I was always looking for hard facts. As it turns out there isn't much out there still and even less for adults with CP. Doctors still argue over the cause of CP and the internet is only full of lawsuit pages... that helps. And I doubt it's likely to change soon.

Just know that the only thing I have really found out is almost all of us with CP struggle with depression and I have most of my life. People close to us listen and try to help but they shut out the pity party noise after awhile and then you tend to internalize the pain. It's hard to be different. Plain and simple. I'm sure most of us deal with it better than someone who was healthy then suddenly finds themselves disabled. It must be easier to deal with the way you have always been, then to wake up one morning and need help doing the smallest tasks. That aside, it still burns a little to know you simply cannot and never will be able to do certain things.

I have never been able to:

Skip

A pull up

Dance well... (that could be anyone though i guess )

Play an instrument other than the trumpet


Okay, maybe those aren't big things, but they bothered me. I would have loved to play the piano or do well in gym class and the fact that I couldn't if I tried bothered me a lot. I guess sometimes the little things add up. And I tend to forget all of the things I can do.

One last bit of advice... encourage your daughter to try! Everything! There were lots of things I said I couldn't do even before I tried and my parents proved me wrong. I learned to swim, (in the water is the only place I feel graceful) I learned to ride a bike, and drive a car. And lots of other things. Don't take the doctor's word as the Gospel truth and she might surprise you again and again.

My mom wanted me to share a story with you...

When I was about 4 years old, (I was diagnosed at 18 months) my mother was worried about how I would handle everything and how much she should protect me from when she looked out her kitchen window. There I was with my cousin Christy and her friends playing on the swing set. The problem? I was swinging from the top bar between the two swings like a monkey. He first reaction was to have a heart attack and run out to snatch me off the thing. But before she could react I let go, hit the ground and was off doing something else. She told me she calmed herself down and after that she didn't worry as much, that it was easier to accept that I could be just like other girls when she saw it for herself. Having only minimal information from the doctors just put all kinds of unneeded worries in her head. We don't really notice our limits unless they are pointed out constantly. I thank her every day for not being over protective. I would have missed out on so much.

One last thing... I fell down a lot. I still do, but not as bad. You do tend to teach yourself how to fall so it doesn't hurt as much. Tuck and roll! But with falling as a child comes attention! From you mom! My mother finally caught on to my falling on purpose fairly quick. The one thing she didn't like was all of the nasty stares when she'd stop and just tell me to get up. She said, "You fell down so much that I couldn't cuddle you every time you did. I found out what happened when I did that all too quickly. You'd fall on purpose! People would look at me nasty when I'd just stop and tell you to come on and get up." That can't have made her feel like a good mom, but most of it I couldn't help and most people assume too much.

Just don't let other people judge the way you handle certain situation. you can't stop and explain everything to every passerby so don't try. Ignore it and go on and your daughter will too. If you make everything an issue it could carry over to her.

Thank you (and your mum) so much for sharing your stories and spend your time talking to me, i feel so much better about everything.

I'm sure in life Ellie will come across things that she can't do but as you say she's got to try, after all if she doesn't try she's never going to know. She amazes me every day with the things she can already do and things she's trying to do. We take the attitude that if we stop her from trying to do things then she will just give up, and she's such a strong little girl that she'll find her own way of doing things.

I know what you mum means though, everytime Ellie wants to climb down from the sofa, or climb up the sofa i worry, yesterday she desised to climb to the 2nd step on the stairs........she then lost her balance and fell off, bumping her head, after a few tears she got up and tried again, i wanted to stop her but i know she needs to practise so she can learn how to deal with steps, after all its not like she can avoid them all her life

And your right, people do look at you funny, Ellie is very tall for her age and when people see her in a pushchair they keep telling me she's lazy or that i shouldn't give into her and make her walk, i've explained to our neighbours and they had all the usual questions but the people who stop you in the street used to bug me, still does to a certain extent.

When Ellie was diagnosed i told a few close friends and they were all quite supportive however one of there mothers (who i've known since i was 10) stopped talking to her, stopped trying to play with her when she saw us and told me that i should still love her because even though she's 'like that' she's still an angel. I was so upset and furious i've barely even spoken to the woman since, i still can't believe how much her attitude has changed towards Ellie, its made me nervous about telling other people.

We all run into all kinds of ignorant people. Especially the kind who automatically think that because we have CP we must be mentally handicapped as well. While that is sometimes the case it is certainly not the majority of us. My dad always said that kids were cruel, but I found adults to be the cruel and sometimes down right stupid ones. I've heard things like "Why do you walk like that?" and my personal favorite, "Were you in a car wreck?" And some not so nice questions, but you just have to answer as best you can and move on.

After a while you get used to it. I answer automatically the same way nowadays. It's almost rehearsed and probably sounds programed, but I just don't want to spend my whole life talking about it to people who won't understand anyway. I've had many people treat me just fine until I said 'cerebral palsy' and then I could tell they suddenly became uncomfortable or afraid that I would somehow pass it on to them, or that they were embarrassed for me. Or at least that they had asked an embarrassing question. I still don't understand that. I've had my whole life to get used to the idea. Do they really think they're the first ones to ask me about it? Sometimes i wonder if it wouldn't have been better to be worse off. My CP is almost unnoticeable until I walk in front of someone. But I know that wouldnt stop anything it would just change the questions a bit

I wanted to share a story with you that I remembered last night.

When I was in 6th grade I had a male physical education teacher. Apparently no one told him that I had CP and he asked me himself after class one day what was wrong with my leg. I gave him the same robotic response I used with the kids I went to school with and kept on walking. Being so used to having people ask, I never thought a thing about it. When my mother talked to him later in the year she said he told her that after he asked and I answered so briskly he felt really small. I just thought it was funny, since I had already singled him out as a complete ass. I was only 12, but I had his number. My mom was upset that the elementary school hadn't passed this information on to the middle school themselves, at least P.E. teacher to P.E. teacher. Especially since it was such a small community.

Now, I thought that after he had this information, he'd be a little easier on me. I took it for granted that he would understand that I would have obvious limits. What I didn't know was how much of a prick he really was.

At one point in the year the entire class had to do a whole list of things together. It was stuff like push-ups, sit-ups, stretches, pull-ups, and the like. Some of them I could do and some were just down right impossible for me. I sat up and payed closer attention to him one day after he positively humiliated me in front of the whole class. We had to do what was called a sit and reach. I had to sit on the floor with my legs apart, put one hand on top of the other, and keeping my hands together, reach out as far as I could and touch the floor. It doesn't sound difficult and it wasn't. The catch? My right arm is a good 5" or so longer than my left, so I could reach a heck of a lot further with it. I kept reaching out and letting my hands separate. I've never treated my left hand like it was very useful, so I dismissed it and stretched my right as far as it would go. Of course the teacher kept getting on to me for not keeping my hands together and I was jut getting frustrated since I could stretch farther without my left hand holding me back. I was just too embarrassed to speak up about it. When I looked up at the teacher he was smiling in a weird way, but I tried to ignore it, since I wasn't sure what his smile meant.

A day or so later the class got to pull-ups. Now there's something I KNEW I couldn't do even if he had a red hot poker on my butt. I had to do this in front of the entire class and he bullied me when I couldn't do the pull-up underhanded, my left hand won't turn enough that way to allow it, and made fun of me when I still couldn't do even one overhanded. I left the class that day in silent tears. I couldn't believe a teacher, especially a P.E. teacher could be that cruel to a little girl with a disability. I already felt inadequate in physical abilities compared to my classmates. This experience absolutely crushed me and made me hateful and disrespectful towards my teacher from then on out. I never wanted to participate again. I had wonderful experiences in grammar school and was absolutely dumbfounded as to why things had changed.

I had to learn the hard way, and fairly early I feel, that adults are much less accepting and understanding than children. The young ones never made me feel bad or different, but some adults sure liked to point it out and make a big deal about it. I ran into a lot of teachers afterward that seemed to assume that when I was doing poorly it must be because I couldn't learn. It was very confusing, but I learned to deal with it and move on.

This is by no means the normal way of things, I hope, and a lot of things seem to have changed since I was little. Most people seem to be more open minded and better educated in areas of disabilities, but CP seems to be one most people know nothing about. That just makes people make nasty assumptions about another persons condition instead of asking and knowing the truth... like your friend. I wish I could be inside someones' head when I tell them the first time. What would be going on in there I wonder? I'm sure it could go something like this:

"Is it contagious?!"

"Should I apologize for asking?"

"Is she pissed because I asked?"

"Poor thing, she must be miserable."

"Does she understand anything I say to her?"

"Is she mental?"

Oh, I could go on like this forever. LOL

The point of all of this is for me to say to you... there are all kinds of mind sets out there. Some people will embrace your daughter without a single thought of her disability past the first question about it and others will make their relationship about nothing but that. Kids can be cruel, there has been one bad egg that I remember picking on me, but adults are far worse. I educate as many as I can, especially the ones who recoil from me when I say CP, since they are the ones who obviously have the wrong ideas to begin with. It feels good to lecture someone who thinks they know it all.

So, don't stop talking about it. I think someone's reaction tends to show their true character and keeping silent won't make it easier. If you're afraid to be open about it your daughter might be too.

And if all else fails you could just tell them to piss off.



Or something like that.