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    Old 07-14-2008, 12:30 PM   #1
    KPK512
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    A question for older CP people...

    Hello, I am new so I'll provide the quickest background I can. My son is 14 months and has spastic diplegia or triplegia, we don't know to what extent his right arm is involved. And we're somewhere mild-moderate, tough to say just yet, we have another appointment with the specialists on Jul-23. Anyhow... his condition arises from a growth restriction that happened in utero. I had a 32 week high-res ultrasound and he looked great, 12 cm of fluid, measuring a few days ahead. Then at 39.5 weeks I felt a pull when I picked up my 16 month old and had some show and we went in to be monitored. He traced flat and they wanted to induce, I said no and I went for the ultrasound. He was only measuring 34 weeks with fluid and enlargement on his heart, kidneys and liver and he had less than 2 cm of fluid, he came out by emergent c-section. Somewhere between 32 and 34 weeks I got a massive infection (chorioamnionitis). I didn't have the fever that would have been most indicative and he never moved (the whole pregnancy) so I didn't have that frame of reference either. I fully feel like the doctor should have caught the fact I couldn't possibly have grown with a baby that wasn't growing and depleting amniotic fluid, I had 5 appointments with him from 34-39.5 weeks...

    Anyway, so here we are... one of my biggest fears is that some day he'll resent me for not preventing this. I rack my brain every day about what I could have done differently. I know teenagers blame their parents for everything anyway, I know I did!!! I truly truly DREAD the day where he says to me that I did this to him. For those of you that have been through those feelings, please be honest... do you really feel that way (like your mother/parent caused this)? If you went through that feeling and you no longer feel that way, how long did it take to understand that it wasn't their fault? I just don't even know how I'll approach it when he's ready to talk about it. I can handle therapies, court rooms or surgeries. But I don't know that I can handle him thinking I did this.

    Any and all stories, suggestions or words of wisdom are very welcome!! Thanks!

    KPK

    Last edited by KPK512; 07-14-2008 at 12:31 PM.

     
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    Old 07-14-2008, 09:27 PM   #2
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    Re: A question for older CP people...

    I have thought about this, and even though I know it technically had something to do with my mother, I know she wouldn't have wanted to put herself or me through all that is associated with it, so she is innocent. Sometimes I want to blame her doctor, honestly. I don't know what anybody could have done. They don't know the cause with me and I guess they never will.

    Nobody asks for this. It's not your fault. Why would you do something like that? You wouldn't. So don't be so hard on yourself. Do the best you can do and that's all you can do. Good luck!

     
    Old 07-15-2008, 02:51 PM   #3
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    Re: A question for older CP people...

    Hello KPX, Welcome aboard, That never crossed my mind about blamng my mom for what happened to me. Instead I blamed God for what he did. But I don't blame hm anymore now. I have accepted it and this is the way that God created me.
    God bless
    Deborah

     
    Old 07-16-2008, 12:12 PM   #4
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    Re: A question for older CP people...

    Thank you both, those are comforting thoughts. I do still have a lot of anger and animosity towards my OB. I will definitely have to let it go someday but right now I am unable to. I don't want Hunter to feel that way toward me or anyone. You're right about me not wanting this. But I do know I blamed my mom for me being unhappy and "ruining" my life on an occasion or two and I just feel like he'll have those same feelings x10. I wish I weren't so scared of the future... one day at a time. Thanks for the insight!!

     
    Old 07-19-2008, 08:41 AM   #5
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    Re: A question for older CP people...

    Hi KPK,
    I will be 41 next month and have never blamed my mother for what happened. There are plenty of other things she did wrong, like having affairs while dad was serving in Korea and then leaving him and me the day after he came home (I was 2). I was a big baby (9 lbs. 6 ozs.) and breech, so they're pretty certain that is was contributed to the CP. Apparently if they had done a C-section, I would have been fine, but they didn't do many of those in 1967.

    Just be a good mom to your son, but don't coddle him. My dad and stepmom wouldn't allow me to use my disability as an excuse to slack off, and I am so glad they did (though I tried to do that when I was very young). As he grows and develops, assess his abilities and encourage him to maximize his potential in those areas. If he has weaknesses, realistically challenge him to overcome those. He will thank you for it when he is older.

    ~66~

     
    Old 07-19-2008, 08:11 PM   #6
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    Re: A question for older CP people...

    My parents fought a lot during the pregnancy. My Dad hit my mom. She said not bad enough to hurt me. I believe it probably stressed me out though. I was 3 weeks early with a hole in the umbilical cord. To answer your question, I blamed my Dad (not to his face, just in my heart) and the doctor who definitely made some errors in judgement. I have never blamed my mother.

    I do blame my Mom for my not being better prepared for life. Because she was a perfectionist, she had to have things done her way. She was trying to teach me how to cook once and because I could not crack an egg like a two handed person she gave up on me claiming she didn't have the patience to teach me. My parents took a "wait and see what she can do" approach with me. I am now 37 years old with my 4th child on the way and I still can't really cook.

    Just be there for your son and push him to his limit and love him with all you've got. He won't resent you.

     
    Old 07-21-2008, 01:37 AM   #7
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    Re: A question for older CP people...

    When I was little I used to say things like "my foot is bent because my sister was sitting on it before we were born". I didn't actually believe it was her fault, kids just say things like that.
    I know it wasn't my mom's fault that we were born 3 months early, but she still thinks it was. It really, REALLY bothers me when she says that. If anyone was to blame (which they aren't... sh*t happens), it would have been my mom's doctor for not giving her an ultrasound and proper prenatal care.

     
    Old 07-24-2008, 09:53 AM   #8
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    Re: A question for older CP people...

    I think the real issue is that you feel guilty and are blaming yourself. I can understand that all the "what if"s and "if only"s have to be hard to deal with. But, like others have said, stuff happens. It's not as if you did anything purposely; it was just one of those things, same as if you had a perfect pregnancy but he ended up with a disability of some sort.

    One thing to keep it mind is that, being born with the disability, your son may have a different mindset about it than you do. My mom went into labor when she was 5 months pregnant and had me at 6, and I ended up having CP. Although we never talk about it, I'm sure she feels guilty, and that bothers me. I don't want to say having a disability has no challenges, because it does, but I'm used to it and that's just the way I am. Even if you're son does have "why me" moments, they wouldn't necessarily be directed at you. Either way, the best way you can help him if he does get down about it is making peace with it yourself and telling him that everything happens for a reason.

     
    Old 07-24-2008, 09:20 PM   #9
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    Re: A question for older CP people...

    Thank you all. Your insight is truly valuable to me. We still question a lawsuit against the doc. Of course we do think it was something he could have forseen as well. Longer story than my intro... I just want to know that in the end Hunter knows I did what I could and if I could change it I would but that at the time I did all I could. Your responses give me comfort, hope and direction. Thank you all
    Kristi

     
    Old 07-25-2008, 05:49 PM   #10
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    Re: A question for older CP people...

    Hi Kristi,

    Everyone here has pointed out some excellent things.

    I know a lot of people with CP and no one blames their mothers. However, I know many of those mothers who blame themselves and some of them 20 and 30 years later who are going to counseling because they canít get it out of their heads that this is not their fault. And like others here have said, that hurts your child - when they know that you blame yourself.

    I have CP because my mother was injured at 32 weeks and as a result I was injured and her doctor didnít montior us closely enough. Completely not her fault. Just like your sonís problems are not your fault. Chances are if you explain to your son early enough (in a simple frank way,) why he has CP he wonít even think about it later in life.

    Donít let your son see you blaming yourself and he wonít blame you. Crap happens, you know?

    For all the awful things Iíve said and done to my mother because I was angry it was never about disability.

    Quote:
    I just want to know that in the end Hunter knows I did what I could and if I could change it I would but that at the time I did all I could.
    Regarding the statement above: donít ever tell your son that if you could change what happened you would. Instead tell him that you love him for exactly who and what he is and you wouldnít change that for the world. Trust me, if you tell him that you would change him if you could puts all kind of nasty self worth and doubt issues into his head and nobody needs that. TRUST ME

     
    Old 08-07-2008, 06:54 AM   #11
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    Re: A question for older CP people...

    She is right about telling him you would change him. That's the same as saying, "Boy, if I could go back and make sure you had your grandma's nose instead of that one I sure would!" (implying that your nose is really ugly; or implying that the disability is bad/makes you a bad person)...

    I always think of CP like having to wear glasses: you use something to get around/to see. Imagine that needing glasses was a lot less common than it is. People would probably think that you having to put glasses on every day to be able to do "normal" things is unfair or hard. But you, doing it every day, would know that it's not a big deal, because it's just something you do that you're used to. It's part of your everyday life, and doesn't change you as a person at all. So you wonder why everyone makes a big deal out of it. (or maybe he will just walk "funny"; would you think that speaking "funny", with a lisp or something, was as big of a deal?) That may be corny, but that's how I always think when trying to explain to people how it feels to have a disability.

    I hope it doesn't come off like I'm belittling your feelings or the difficulty of having a child with a disability, because that's not what I'm trying to do. I know that parents have to grieve for the "normal" child they were expecting to get, that they lost. I'm just trying to help you, because I know that I, and probably others with CP on here, wish that I could tell my own parents then, what I know now (if that makes any sense).

    I think this little story sums up what I'm trying to say: Welcome to Holland [url]http://www.ndsccenter.org/resources/holland.php[/url]

    Good luck!

     
    Old 08-08-2008, 08:12 AM   #12
    KPK512
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    Re: A question for older CP people...

    Thank you again for more great responses. I have that Holland poem on my office wall and I read it a lot. Some days it's hard to yearn for Michaelangelo and still appreciate your Rembrandt but the Tulips are beautiful and it's not a horrible place. But the economy is worse and there's a lot less time in a day and it's hard to deal with those some days.

    I think what I meant by I would change things is that I don't WANT him to have to know what it's like not to be 'typical'. I won't even use the word "normal" because what the heck IS "normal" these days anyway. But would I rather he get to go to soccer practice instead of physical therapy and botox injections?? Heck yes. Do I want it for me anymore? Not really. I want it for him. I want him to be able to do the things he wants to do without my help. I know that a time will come where I will have to explain that I am just so happy he is here and I wouldn't have it any other way. After reading our medical records, we are just so thrilled he's with us. I know it will make him who he is and if he hadn't had these challenges he would be a different person and I know I'm going to love the person he is. But as any parent will tell you, you don't want your child to have those challenges. Would you change your child getting cancer if you could? Undoubtedly every person would say yes. I don't want him to have hardship or to have to ask me to help him go down the slide. I want that freedom for HIM.

    So all those thoughts... I do hope I can express to him that I wouldn't change one thing about HIM but I would love to have been able to give him more. The way things played out, it turns out this WAS the BEST possible scenario so changing anything would have been awful and I will never hope for that. But I do wish I could make those other things happen for him and we'll try our best to do that. And I think he has to know that too.

    Would anyone mind enlightening me more on what it's like to have CP? What frustrations do you have most often? What things that people do make you most uncomfortable or most at ease? Do/did you mind if your parents make you do things you don't want to do (my son is particularly in the mindset of wanting me to just do it for him and I battle with making him frustrated and having to do it himself)? I love hearing these perspectives and I am grateful you are so willing to share them with me You're quite a great group of people

     
    Old 08-15-2008, 07:21 AM   #13
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    Re: A question for older CP people...

    Well, as far as what makes me uncomfortable, if you mean physically, I can't walk for very long before fatigue sets in (which I think is true of a lot of people with CP, if not when they're younger, then definately as they get older). Tell that to my "aide" in high school, though, who thought I was just being lazy when I said I couldn't carry my bookbag (hmm, you try walking with your knees bent all day, lady, and then add a 15-pound bookbag ). Anyway, so I use a wheelchair when I know I'm going to have to walk a lot.

    Uncomfortable mentally, I'd say that it's other people who can get "uncomfortable" around a person with a disability. I suppose some people are just not used to it, or maybe it's in my head, but sometimes people look at me like I'm an alien or something if I actually try to be outgoing and talk to them, LOL. Strangers also stare a lot, which can be VERY annoying (I'm sure if you do a search for it on this board, you'll find some complaining ).

    I guess I'm shy due to low self-esteem, partially because my family never talked about my disability at all. I ended up researching it when I became a teenager. I can tell you that that's a problem. I believe that it was because my parents didn't want to treat me any different or single me out...but that just doesn't work because NOT talking about it can make it seem like something "bad," something that's "not supposed to be talked about," ya know what I mean? We get those kinds of messages from other people/society enough that we need to know that it's accepted by our families. (I'm not saying you don't accept it, I'm saying that it just needs to be explicitly stated by openly talking about it.) And I don't mean talking to him about it in medical terms now, but if he does ask about it you can say, "hey, this is what it is, but it's no big deal and you have a lot going for you, you can do..." That will help a lot with self-confidence and dealing with unfamiliar strangers, now and later. Out of curiosity, what do you do when little kids come up to you/him and ask "what's wrong with him" or "what happened"? Answering them (instead of ignoring them, like my parents did) by saying "he was born with something that makes it hard for him to walk, so he uses this wheelchair like his own little car to get around" (or whatever applies) will help him see that the CP is no big deal and show him how to approach others about it later.

    With making him do things, what kinds of things do you mean? I know that when I was younger, my dad would always say I needed to dress myself and leave me to struggle with it for an hour (with my maybe a sock getting half on, haha)...but he didn't consider that I had CP, and I couldn't reach my feet to put pants on, etc. Eventually, we went to an OT and got some adaptive aids (like a grabber and a sock thingy) and everything was fine, but...I'd say just make sure you put him in the best position to succeed and then make him do things on his own. Being too overprotective isn't good, either (my mother still puts a death grip on my arm when I walk down even the tiniest curb, and it drives me nuts).

    Sorry so long, hope that answered your questions a little!

    Last edited by Steffers2318; 08-15-2008 at 07:23 AM.

     
    Old 08-16-2008, 07:15 AM   #14
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    Re: A question for older CP people...

    When I was growing up, my mom and dad told me I was different, but they tried to treat me like a "normal" child as much as they could. They had me try to do things for myself whenever they could. They didn't sugar coat anything because the CP was what it was, and it wasn't going to change. I believe they did the best thing for me because I am relatively independent now. I do think you need to be up front with him about his disability. Let him know that it is ok to be upset sometimes when he can't do certain things. Praise him when he does something independently..especially now since you are having problems with that.

    As far as things that make me uncomfortable..I don't like it when people (adults or kids) stare at me. I know that kids are just curious, but the adults should know better. A glance doesn't bother me, but staring at me after I'm ten feet away from you is ridiculous..sorry just had to vent a little.

    One thing that I wish I would have known about a long time ago was Botox. The Botox has improved my mobility a lot. I am a completely different person (walking wise) than I was a year ago.

    I just thought I'd add my input...

    Last edited by ozfan79; 08-16-2008 at 07:16 AM.

     
    Old 09-28-2008, 03:45 PM   #15
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    Re: A question for older CP people...

    it is a fear that other have

     
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