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    Old 12-29-2005, 12:01 PM   #1
    laurieel
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    Adults and teens with CP: How will I answer his questions?

    Hello everyone,

    I usually post to the 'parents' posts but I find the threads from all of you adult/teens with CP to the most helpful in giving me a glimpse into how my Son's life may/may not be and the unique challenges and triumphs he will face. Seth, my younger of two sons, is 2.5 years old.. Has atypical (no known reason) CP (spactic Dip. in legs, low tone, etc, elsewhere - no cognitive delays that we can tell - walks independently some now but uses walker too making great progress everyday).

    I guess since I see the questions/insights my 5 yr old son has now about Seth's CP, it makes me wonder when I can expect Seth to start asking about the CP and why he's different and 'why me?" and all the associated emotional development that is sure to wonder about soon (he already is pretty accepting of his differentness and knows his legs are 'too tight', etc). And when he does.. what do I say? What did your mom's say when you were 4, 5, 6 yrs old and didn't want to be different or wondered why you were or whatever? So far I give my 5 yr old the facts and say that there are some reasons we dont' know and will never know.. "God made SEth that way".. "yes he will always have legs taht work differently than ours..etc".... And I try to do my best not to show too much of any un-resolved sadness or acceptance feelings I am dealing with. I feel like if I am open and honest, remain positive, and do my best listening and help him know his feelings are valid and that he is a person with great talents and a lot to offer aside from the CP (or even because of it) that that is the best I can do, right?

    My heart breaks thinking of the "why can't I do this or that?" questions coming out of his littel mouth. Maybe his resilient heart wont dwell in any negative feelings taht may arise. He has a happy, outgoing spirit now so I have no reason to think it will change.

    I just wonder what your parents said to you to help you (or what NOT to say) or for other parents.. what you've said to your children as they have grown and understand more about their CP.

    Any insights are greatly appreciated! I hope everyone is having a GREAT holiday so far!!

    Laurie

     
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    Old 12-29-2005, 02:21 PM   #2
    Steffers2318
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    Re: Adults and teens with CP: How will I answer his questions?

    I think you are on the right track so far with the way you are handling things. You have to acknowledge the CP but don't make excuses because of it, which sounds like what you're doing. Really, everyone has something physically wrong with them, CP is just a bit more noticable than some things. As for using a walker and that kind of stuff, I like saying "It's the same as people who need glasses because their eyes don't work perfectly--I need to use something to help me walk because my muscles don't work quite the same as everyone else's." I don't remember ever asking "why me?"; I just became used to the disability and accepted it...but if your son does ask, I would just say that everything happens for a reason (my motto ) and he sould remember that it has made him a stronger and more understanding person, or whatever.

    As for what NOT to do, I would say that totally ignoring the questions of others (little kids) when out in public is not a good idea. My mom did this, and still does...which, I can understand it making her uncomfortable or her not knowing what to say...but, saying something like "God made his muscles a little tighter than normal" and smiling will help your son see that having CP is nothing to be embarassed about and will help with confidence. Maybe you already do this, I dunno!

    Anyway, I hope this helped a little...I think the fact that you asked these questions already shows that you will be prepared for any possible issues later!

     
    Old 12-29-2005, 10:21 PM   #3
    Malwm01
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    Re: Adults and teens with CP: How will I answer his questions?

    Hey Laurie!

    Steffers, really made a great post. I never really asked "why me?" or really had a problem with CP (there were exceptions.) My parents/family and therapists always made sure I knew that every one was different (I think it helped that I went to a school from age 2 to 6 years with kids that had all kinds of disabilities (learning, physical and other chronic health conditions) and kids that did not.) This helped me see at a very early age no two people are alike and we are all very different.

    I also agree with Steffers, don't ever make it seem like disability is something that needs to be hidden or something shameful, embarrassing or taboo. I know my parents did this (unknowingly) and it's something I have a hard time shaking as an adult.

    This is just a general thing but while you're here I wanted to say it: as for what not to say, to a child with CP... don't ever tell them they can't do something. Let them do it until they give up. I know that may sound cruel (setting a kid up for failure) but when I was about 6 my cousin moved up here and was living with us and she took ballet every Saturday and I wanted more then anything to go to ballet class with her. I didn't care about braces/walkers/crutches I just wanted to go put on a leotard, tights and tutu and dance around and pretend to be a prima ballerina (because how many of those kids really are gonna be ballerinas anyway?!) That would have been all it would have taken to make me happy... instead, I got told, "You wont ever be a ballerina, you can't."

    In the 22 years of my life this has stuck with me as the most horrible thing my parents ever told me and I'm still bitter.

    I know it's a small thing... (and I can joke about it a little) but at 6 it hurt tremendously to be told I couldn't do something when everyone always made everything else happen for me with a little tweak here or there.

    Now that I've gotten that off my chest I think you're doing a fantastic job preparing yourself for the future, and I think Seth will do just fine and if he hits a rough spot... I think you'll have no trouble turning his thinking around.

    HTH, ~m.

     
    Old 12-30-2005, 07:16 AM   #4
    Steffers2318
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    Re: Adults and teens with CP: How will I answer his questions?

    Quote:
    Originally Posted by Malwm01
    This is just a general thing but while you're here I wanted to say it: as for what not to say, to a child with CP... don't ever tell them they can't do something. Let them do it until they give up. I know that may sound cruel (setting a kid up for failure) but when I was about 6 my cousin moved up here and was living with us and she took ballet every Saturday and I wanted more then anything to go to ballet class with her. I didn't care about braces/walkers/crutches I just wanted to go put on a leotard, tights and tutu and dance around and pretend to be a prima ballerina (because how many of those kids really are gonna be ballerinas anyway?!) That would have been all it would have taken to make me happy... instead, I got told, "You wont ever be a ballerina, you can't."
    That's a good point, although in certain situations there may have to be exceptions...like something may not be safe for a kid that isn't as strong or can't move as easily...although on the other hand, you could always find an alternative, like going to adapted swimming or something like that. You know your son's abilities and have to judge.

    As for the ballet thing, my older sister did that when I was little, and of course I wanted to do it too (I played the piano because she did, too ). I think that ballet is kind of tough for someone with CP, but my parents looked for an alternative...I went to tap class instead! I could put on my little shoes and outfit and walk around in my walker and I thought it was just the coolest thing. Needless to say I wasn't very good (wasn't good at piano either) but that didn't matter to me, I wasn't even worried about that. So M, don't be too angry at your parents, it is technically true that doing ballet isn't very practical for someone with CP (at least in my opinion), and I'm sure they didn't mean to sound so harsh, it just didn't occur to them that there might be something else they could do that would be similar.

     
    Old 12-31-2005, 05:08 AM   #5
    laurieel
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    Re: Adults and teens with CP: How will I answer his questions?

    Thanks Steffers and Mal! You guys rock.. That is so great to hear... that you never sat around askign "why me?" your whole life. I don't foresee Seth being that way either. He does want to do what his brother does and (In my opinion) has a way better throwing arm for baseball!! We will let him try whatever he wants.. He loves the piano at my mom's house and all musical stuff so maybe he will find a niche there. There is a "miracle league" baseball league around here somewhere so we will probably look into that.. I bet he will love it and typical kids like his brother get to be helpers for kids in chairs, etc... sounds way better than the overly-competitive typical sports legues anyway.

    But back to my point.. no, we never shy away from questions from adults or kids in public or wherever! I find myself wanting to educate and tell the whole world about it because I know they are curious and so many of them have old school or uneducated notions (like my OWN mother) that all physically handicapped people are also mentally handicapped, etc. And I do try to always be positive and relaxed so the other person will get a postive perception of Seth and CP in general. I want Jackson to see how we handle the quesitons too.. so he will feel comfortable answering things when people ask him.. He is super social (they both are)so I want him to be equipped.

    The main thing I hate (well cringe when I get this response) is when I tell someone he has cp and their response is "Oh, I'm sorry." I usually say .. "OH, dont' be sorry!!!"... I want to say...dont' be sorry for us..we do great.. I don't want them thinking Seth is a sad case.. although before I had him.. I know I would have thought the same thing.. "How sad, a handicapped 2 yr old, I'm so glad my child does NOT have that".. Which I know is a normal reaction too.. Anyway.. I try my best to buffer that response.. but I get it mainly from older generations (where you hid disabilities).

    Okay.. thanks.. Once again.. you guys have provided healthy insights for me. I need to post sometime about my guilt about being a working mother sometime and get your feed back on that one!!! Sigh!!

    Happy New Year everyone!!!
    Thanks again
    Laurie

     
    Old 12-31-2005, 06:41 AM   #6
    Zagreus
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    Re: Adults and teens with CP: How will I answer his questions?

    My son wanted to know if God could make mistakes. I told him that, yes, I thought God had made a world where mistakes were possible and that God is in the process of learning just as we all were. Since I don't believe in predestination, I couldn't tell my son that God had afflicted him with CP, but rather that God had created a natural world in which disabilities occurred. We decided that God would never want anyone to have CP, but that God would also comfort anyone with CP and feel their frustration as well. Since my son's symptoms are mild, he's been more concerned to disguise them as he moves into adolescence. I continue to reassure him and tell him he doesn't need to disguise his symptoms but that he does need to continue his therapy and his stretching so that he can be as physically active as possible.
    I think this path is undoubtedly different for each child and for each parent and that we learn as go along. The important thing is for our successes and failure to be loving ones. I'm sure you and your child will do well with these issues.

     
    Old 01-03-2006, 12:13 PM   #7
    WMCR2001
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    Re: Adults and teens with CP: How will I answer his questions?

    Hi,

    My answer comes from the viewpoint of a single female who has never been a mother. However, I am an elementary school teacher. Also, my boyfriend (whom I plan to marry!) has spastic quadriplegia CP, where he is completely dependent on his wheelchair and assistance from others.

    One thing I have told my boyfriend is to look at it from this perspective. Yes, he can't walk (which really doesn't bother him as much as it did when he was a child, by the way). However, you want to look at all of the things he CAN DO! My boyfriend can talk very articulately (albeit with a little accent). He is very intelligent and has a 4.0 in school right now (aiming to graduate this spring and then finish up after he moves across the country). I told him, just think! Your brain was affected somehow and that caused your CP, but look at the intricacy of the human brain... it would have been so easy for a blood clot or damage to be caused anywhere in your brain. It could have easily affected your speech, your emotions, your intelligence, etc., and yet it ONLY affected your movement! He was very moved and humbled by what I told him.

    As an educator who has worked with kids with disabilities (albeit none with physical), I find it wisest to focus on the positives. If your son can walk, even with assistance, that's GREAT! That's even more than my VERY capable (and wonderful) boyfriend can do.

    From an outsider's point of view, I will say that a person with CP can do anything an able-bodied person can do, but it's all simply done differently.

    And finally, attitude is everything. Keep feeding your little one with lots of encouragement, patience, and love. He will thrive off of it. Cultivate his positive qualities, because they can make him shine and help overshadow his disability. And be prepared for questions. My boyfriend receives a lot of stupid questions that have ranged from "Can he eat?" (um... duh... why are we in a restaurant together and how does he survive?) to "Why can't he walk?" to "Oh my gosh, he can talk????" But you can't let the stupid questions worry you, because then your son will be bothered by them, too. Instead, try making a joke out of them later on. That's what my boyfriend did while growing up and that's what we continue to do today.

    I'm sure you'll be a great mom! Don't give up!!!! My boyfriend's most powerful influence in his life was his mother, and she helped him to become the most amazing and wonderful person I've ever met. You can do it, too!


    Christina

     
    Old 01-09-2006, 08:01 PM   #8
    earthdayapril22
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    Re: Adults and teens with CP: How will I answer his questions?

    I'm 20 years old and i've had a facial paralysis since I was 4 years old from CP. I took therapy when I was 4 but nothing helped at all, after that I felt that my parents gave up on my condition and they did not do anything about it. Now we are considering surgery but things are going slow because they have many other stuff they have to take care off. And now it's really making my emotional health very unstable.

    My advice is to be always supportive and make sure he always know you are there for him and that you are offering the best alternative to his disability. God bless your son !!


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    Old 01-10-2006, 05:19 PM   #9
    sassysweetie
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    Re: Adults and teens with CP: How will I answer his questions?

    I have spastic hemiparesis. My mom never came out and said the words "CP" to me as a child.....it was always "You have right hemiparesis". I didn't figure out that I had CP until I was 10. I am in my sophomore year of high school, and the term "cerebral palsy" is still not on my records. My mother is/was afraid of the stigma it would cause (affixing a label of "special needs" often means "learning disabled" or "mentally disabled", neither of which applies to me). I have an general IQ of 135, which is above average, and a verbal IQ of 175 ("profoundly gifted").

    My mom always told me that my right side "didn't work as well as my left" because "my brain bled when I was a baby". She never told me I couldn't do something. She just taught me how to do things my own way. (Note: My mother is an occupational therapist that works with brain-injury survivors, and has been since I was 3). I started reading at age 2, so she knew I was intelligent...

    Now that I'm a teenager, I advocate for myself. I am just getting a 504 (Section 504 of the Rehabilitation Act of '73) implemented (to keep texts at home, 5 minute early dismissal from classes, etc.). I just wrote a research paper on the disabled rights movement. I educate my classmates about my disability, though not everyone is nice about it (but my biology teacher LOVES me). I've just learned that if people can't accept me, they are not worth my time! I'm proud that I survived!
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    Old 01-11-2006, 07:36 AM   #10
    Zagreus
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    Re: Adults and teens with CP: How will I answer his questions?

    Quote:
    Originally Posted by sassysweetie
    I have spastic hemiparesis. My mom never came out and said the words "CP" to me as a child.....it was always "You have right hemiparesis". I didn't figure out that I had CP until I was 10. I am in my sophomore year of high school, and the term "cerebral palsy" is still not on my records. My mother is/was afraid of the stigma it would cause (affixing a label of "special needs" often means "learning disabled" or "mentally disabled", neither of which applies to me). I have an general IQ of 135, which is above average, and a verbal IQ of 175 ("profoundly gifted").

    My mom always told me that my right side "didn't work as well as my left" because "my brain bled when I was a baby". She never told me I couldn't do something. She just taught me how to do things my own way. (Note: My mother is an occupational therapist that works with brain-injury survivors, and has been since I was 3). I started reading at age 2, so she knew I was intelligent...

    Now that I'm a teenager, I advocate for myself. I am just getting a 504 (Section 504 of the Rehabilitation Act of '73) implemented (to keep texts at home, 5 minute early dismissal from classes, etc.). I just wrote a research paper on the disabled rights movement. I educate my classmates about my disability, though not everyone is nice about it (but my biology teacher LOVES me). I've just learned that if people can't accept me, they are not worth my time! I'm proud that I survived!

    I liked your paper -- I saw it in the other thread. My son's been working on a similar topic (at the elementary school level) for his English class as they talk about the civil rights movement.
    Maybe you have a future as a lawyer.

     
    Old 01-12-2006, 01:14 PM   #11
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    Re: Adults and teens with CP: How will I answer his questions?

    I'm planning on being a neurologist or teacher...but I will advocate til the day I die! Thanks for the kind words!
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    Old 01-13-2006, 05:14 PM   #12
    cooljen94
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    Re: Adults and teens with CP: How will I answer his questions?

    My mom just gave me a bunch of picture books when I was little if I remember more of the names I'll post them one is "Living with Cerebal Palsy" another is called "Everyone Is Special" or something like that. Again,I'll post them when I think of them

     
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