What is Cerebral Palsy
Cerebral palsy or CP is the most common childhood physical disability. It is a permanent physical condition that affects movement. A new international consensus definition has been...
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Alone with CP **Please read!**
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Hi Everyone,
Thanks for taking the time to read this. I have grown up with mild CP. My whole life I was told I was normal, but then at the same time treated "special" by my mother. This has caused me to feel ashamed and embarrassed to mention my CP to anyone, even doctors, because every time I tried to say "I can't do that because of my CP." She would be right behind me telling me I was making excuses. When I would go to PT or horseback riding she would say "See those kids in chairs and stuff, they are disabled ... not you." I now think she was trying to convince herself but it has really damaged me as a person. All of my life I have dated non-disabled people. But at the end of the day, I never truly felt UNDERSTOOD. So again I felt embarrassed about my CP. Sometimes I would tell people that I got in an accident years ago and that is why I walk with a limp. I've tried to get to know others with CP but I felt like they had nothing in common with me because they were very involved with CP. Every time I mention that I have a disability, I always say "But only a little bit, so not really." Because they always say "You're kidding, I had no idea you were disabled." .... like I need to be in a wheelchair or something for them to believe me. I've been a part of a disabled dating site for a few years called www.whispers4u.com I think it is a fantastic site. I've made tons of great friends on there and I feel really understood. Because of this, I've stayed a part of that site even while in relationships. I have come to realize that I've never left Whispers because I've always thought it ideal to meet someone with mild CP like myself. And now I have. I met him very recently .... and things are becoming obvious that we are interested in each other. I have let him know that I am seeing someone, and let my boyfriend know that I am chatting to this new fellow. There is no deciet here. I have tried on many occasions to talk to my current boyfriend about my CP, but he says things like "You just need to work out, it's not your CP." or "You aren't disabled." One time he even said "Well, if you didn't walk like that (with a limp), then you wouldn't have all the back problems and stuff that you have." I have never had anyone say "Yeah, I understand how you feel..." So, it's very nice. My current boyfriend thinks that I am making a big deal out of this guy having CP. He doesn't understand how important it is or was for me to meet someone with CP as mild as mine. He thinks that I don't give him the benefit of the doubt for trying to understand. It's just not the same as understanding it in the first place. When I talk to my new friend, I feel like I'm a whole person, and that a big part of my life isn't awkward or off limits anymore. That I can truly be myself, someone with mild CP. It's liberating. My boyfriend thinks that I'm flawed because I think this way. He said "African American people don't think they need to date other people of their same race just because they have had similar struggles." I said, "No, because they are allowed to date and marry who they please. I had a deaf friend of mine tell me that if he could only find hearing girls to date, and stumbled upon a deaf girl, that it would be the best thing in the world to him... but that he knows both many deaf and hearing girls so he does not have a preference." My other disabled friends agree with me and my feelings. My boyfriend asked me to talk to my mom or her boyfriend about it. I did. And they agree with him and think I am crazy. I'm not sure what to feel. Many of my GBLT friends told me they felt similar when they realized their sexual orientation for the first time and/or came out. Why do I feel as if everyone thinks I'm wrong all of a sudden for feeling the way I feel (excited) about the fact that for the first time in my entire life I have someone who I can relate and be ME around? And why do all of my disabled friends agree with me, but all of my able bodied friends and family do not? Posted on 05/08/09, 06:05 pm |
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Hello Heather~
My heart goes out to you. I totally understand what you are saying. You seem like a very strong person who really knows what you want although you may not realize it you are clear. There is nothing wrong with wanting to connect to a person who understands you and your experiences. To me it sounds like you have been delt alot of people who hender you rather than push you to be yourself and comfortable with your own decisions. Know that your heart will never lead you wrong. Forget the people who bring you down and move on to the people who love and support you for who you are. Alot of able body people cant relate to certain aspects. So follow your heart and do what makes you happy! Michelle 
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It is obvious that what you are looking for in a significant other is the complete emotional and non emotional understanding of your situation. I would stress that the cp isnt really that important. I am speaking as someone with mild cp like yourself so please do not dismiss me! The person has to fit well with you in general. I wouldnt say that this significant understanding of your struggles is a "must" but it sure as heck important to at least experience it once. You may feel like you MUST have someone who has the same condition as you to feel normal but i think that the experience of just being romantically involved with someone sometime in your life may do the trick. That flame like most flames of curiousity tends to burn out eventually. I would prefer not posting it as a public reply to your post so i will PM you..
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"Yeah, I understand how you feel..."
I grew up not knowing I had CP, but knew something was'not right'. At the age of 36 I found a neuro DR that diagnosed me as ataxic CP.
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I think it is very difficult for anyone who does not have CP to understand how someone with CP feels about a condition they were born with. When someone has a broken leg because it is something that is obvious it is very easy for others to empathize because it is obvious. I myself have mild CP and to the untrained eye it is very difficult to know there is a problem apart from a limp which people are aware of and see but do not always understand why. It is important for you to work on your own self esteem so that you don't go into battle every time your boyfriend is negative. There is no harm speaking to someone who has CP and understands your plight. Like-minded people are very important for that reason because they understand and can help. May be this explanation will help your boyfriend change the way he thinks about you and your condition. A reality check is needed! Your boyfriend needs to be there to help you cope not put you down. It is important to have people around you who raise your mood.
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nope. no. no. no. i have friends that are like you and believe me i understand both sides. so if you need someone to talk to, i'm here. i felt that way myself because i'm in a chair and sometimes i wish i had a more mind case but then again i'm glad to be who i am becuase if i wasn't, i who i am, i wouldn't have met my fiancee. think of it that way.
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Hi Im jessica,I also have mild spastic/ataxic diplegic cerebral palsy but,you would never be able to tell if i had it.But,I still get treated diffrently by,my parents "she's special"or look its the"special kid(sped)"by people in my school.When I try to talk to them(parents) they look at me as if I had 3 heads or im acting crazy.To me as an opinion..It is much easier to chat to some one who also has a disability because,if you mention it to a friend they start craking up like you'r playing a joke or trying to talk another family memeber they dont want to hear it.They always may say"you'r lucky you'r not in a wheelchair or have severe cp where you cant function.""you can't think that way,you got to keep thinking postive and be thankful for who you are."OR as if what my parents say alot to me you spend too many hours on the computer sighning onto forums for cp where you could be doing other things.To me...your family should be more supportive/and i think they are in some way but,they still dont understand what you or any one else go through each day of your life having a limp,a tremor,some part of speech impairment..etc.because,they cant share a part of their story or what impacted/and inflicted their life as growing up because,they dont have it.I hope this helps!I truly understand/many of the people here do!Also where you can communicate is facebook its a free sighn up and they have a couple of groups for cp. From Jes18
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I totally understand what you are saying Jessica. I feel that family and friends do in some small way want to help but don't always know how to support and what to say to make you feel better. In order to help they will be somehow coming out of their own comfort zone. Unless as you state they also have what you have and feel what you feel I believe and I agree with you wholeheartedly that they will never really know what it is like to live with a condition like CP. My parents didn't talk about my condition at all, they wanted me to be the same as my sisters and brother and thought that if they ignored everything they would help me achieve normality. Unfortunately it had the opposite effect. I put myself through therapy so I could come to terms with what I know now as being CP, having just been diagnosed. Would that be something you might consider?
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I just want to thank everyone for taking the time to add their own thoughts, views on this topic. It really means a lot to me. Some of you are already on my friends list on DS, some are not. I am so touched by what each and everyone of you had to say. If you would like to add me as a friend, feel free to do so, but even if you do not, I thank you by being a friend for life.
Sincerely, Heather Grace
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Okay so my dd is 5 and was diagnosed at 1 so that is all we have ever known. She is not yet ready to be told but I think she has a good idea she is different. I don't want to make the same mistakes your mom made but I want her to know that any thing is still possible for her. I let her try things to see if she is able in her own way. She has done ballet and gymnastics and though she loved both, they were hard. She finished but chose something else for the next activity. She is now in Girl Scouts and loves it. I still don't know when I will be able to sit her down and really explain it to her but I want her to do things her way. Can't is not an option it just opens our eyes to new ideas. I have accepted she is different and that is okay everyone is different. Now it is my job to show her the world. Any advice you or anyone else has I will be glad to hear it and I think you should be able to be with whom ever you want. You have to be comfertable to make something work.
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I have mild CP too and would love to get to know someone with mild CP too, a friend. I know how you feel! I have felt the same way many times!!
Sherry
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