Last post Sun, Jun 01 2008 8:41 PM by Shannon. 12 replies.
Hi,
I am a caretaker of a 17 yr old teen with cp, her speech is very hard to understand, yet i have come to pretty much master her language. although, when i speak to her online, she has so much more to say and more attitude when she is writing, as oppose to her speaking...is this normal?
Is it normal for teens that have phsical handicap to not be capable of standing up for oneself, speaking up for oneself (in any manner, whether it be writing, texting, motioning, etc...) She rejects things only online wehn speaking with her, never will she reject while face to face, is this strange?
I know kids with CP are intellectually average--but do they really pay attention to their surroundings? maybe i'm totally generalizing based off the one person i know with cp...maybe its with all people that unfortunately have CP?
I;m really curious, and i really feel like i need to know in order to better help her, possibly with her self-esteem? self-image?
thanks!!!
First of all, people with CP are as different from each other as people without CP. The only definite thing we all have in common is a problem with movement that results from brain damage that occured before age 3 and does not progress with time. As you said, this definition doesn't say anything about intellence and it doesn't say anything about personality either. Some of us are shy and some are chatterboxes. Some pay attention to our surroundings and some of us are more oblivoius at times.
If I had difficulty speaking but not with typing, I imagine my personality would definitely blossom more when typing. I would feel more comfortable stating my points because I would not have the additional challenge of the method of comunication. So that may be part of what is going on.
Many teens with CP and other disabilities do have issues with self-esteem. We are constantly being compared to non-disabled people and being told how we come up short. We may be ridiculed or ignored by peers. We may want to date and be rejected. Our families may want us to "act normal" or treat us as helpless and much younger than we really are. These things can take a toll over time. However these are all "maybes" and none of them apply to every situation. And they can't be easily fixed from the outside - self-esteem just can't be given in a box tied with a bow.
Oh, and not all of us think that having CP is an unfortunate thing. I sure don't. I think of it as part of me, just like being female is part of me. My CP happens to be mild but I know people with more severe CP who don't feel it's unfortunate either - just the way we are.
I'm sorry for coming off as offensive towards the end, correct me if im wrong----obviously everything that happens to each person is meant to be and happens for a reason--each person is given their own test..each to his own, ALTHOUGH, being restricted to any degree, i do have to admit is unfortunate- yes, we make the best of each situation that we are in, yet it can still be unfortunate---am i wrong? we do have to embrace each circumstance we are put into!
on the other note, self-esteem, how do you suggest i can help her with her self-esteem and self-image? i dont want her to feel different and to say things like "bec im handicapped i dont have anyone, no guy will ever love me" i mean, she takes it very hard. she suffers every day from this, people ignore her in school bec they dont understand what she is saying...i have helped her made friends, yet she still feels different, and she doesnt like that...any ideas?
also, do u think it would be offensive if i suggested this website for her to explore? she can make so many new friends here-friends that know what she goes thru on a daily basis, etc....?
Others can disagree but I sure don't "make the best" of my CP. Just like I don't "make the best" of being a girl. Neither are tests, neither are bad things that happened to me. There are bad things that have happened to me because of my disabilities and illnesses but they are things people did, out of prejudice or insensitivity. Not things that were inevitable just because of my disability.
As far as self-esteem. . . the best thing I know for self-esteem is haivng people like you just the way you are. Nothing kills self esteem faster than feeling like everyone arounds you want you to be someone you aren't. It sounds like a few people in school can do that while the majority can't. This is sadly not uncommon for teens or really adults either. What does she like to do? The best way to meet compatible people that I know of is to join a group of people with some similar interest. Then everyone can focus on the common interest and not so much on each other. This could be a school club or something extra-curricular.
Does she have a lap-top computer or augmentative communication device that does text-to-speech? She might find it easier to communicate with her classmates by typing than by relying on their patience with her speech. You could help her point out to the other kids she likes to send text messages also and ask for their numbers.
Does she have any contact with other kids with physical disabilities? Mainstreaming has some really good aspects but it can definitely reinforce that "different" feeling. Because having a disability is different. Not bad, but certainly different, and adolescents are not very tolerant of differences. She may enjoy sports or other activities with other kids with disabilities, or participating in an online group for teens with CP. I deal with non-disabled people all day at work and it is such a relief for me to come home and get online with friends with disabilites who really "get" my realities.
You can't convince her that some guy will ever love her. That's not a guarantee for anyone, disabled or not. You may be able to convince her that there are people with CP and other disabilities who date and marry, have kids and grandkids. So even if none of the guys she is around now are interested, that doesn't mean it will always be that way. There's a whole lot of threads on Disaboom where some people are saying no one is interested in them due to disability while others post their love stories.
And since she is 17, my best advice is to ask her what she wants. Her self-image may improve if she is treated as a maturing young woman whose opinions matter.
That is a tough situation. Speaking as a woman with cp who has a significant speech impairment, I can relate. Very few understand, or take the time to understand, Glenda-ish, and that is very isolating at times. Thank goodness for the internet. I'm more outgoing online than in-person with people who haven't mastered Glenda-ish yet. High school is tough because everyone tries so hard to be the same, to fit in. Yet, she is different. Rather than telling her she isn't different, embrace how SHE is feeling. Perhaps if she can embrace her uniqueness, others will too, eventually. But, of course, she has similar needs and wants as any girl, which needs to be recognized too.
Be patient, understanding and supportive and she will get through these difficult years, like any teenager.
curious:correct me if im wrong----obviously everything that happens to each person is meant to be and happens for a reason--
Consider yourself corrected. I've never believed in the "meant to be" theory. Sh*t just happens. Now deal with it and make it work for you.
on the other note, self-esteem, how do you suggest i can help her with her self-esteem and self-image? i dont want her to feel different and to say things like "bec im handicapped i dont have anyone, no guy will ever love me" i mean, she takes it very hard.
She's a teenager. I've met very few teens that have solid self-isteem and self image. Does that make her desire for a boyfriend any less real? No, of course not. But have her look around at her clasmates. How many of them have boyfriends? She will say that it's only got different girls that don't. Remind her that she is different and that's a good thing. Convince her that she is the cool kid and the others are just weird.
Clubs and sports are a good idea. How severe is her CP? Can she get involved in wheelchair sports?
As a teemager, I went to an all disabled high school, but I hung out with non disabled kids. I actually had more in common with them. Same neighborhood and family problems. Does she have any friends? Have her concentrate on that relationship. A good friend at the point is life is gold. 28 years after high school, I don't see anyone I went to HS with. I don';t even know what happened to any of the old girlfriends. They couldn't have had too good a life. After all, they didn't end up with me.
Bottom line is that she's a teenage girl. To her everything is a drama. At the same time she got the issue of CP mixed into it. So, the drama is huge, to her.
what kind of wheelchair sports are there? she is bound to a motorized chair (gogo), though her classs is constantly playing sports, although she sits on the side. she enjoys watching them play, yet deep down she wishes she could join and run around with them. yes, she has many many friends. she still wishes for a boyfriend. she wants to feel the companionship and the love...
Your reply was really comforting. i know that she is going through what every other teenager is going through, but its more complicated with her...she cant voice her opinions, she cant voice much...i feel so frustrated for her. i wish i knew how i can help her;..
Curious, You've got me curious. How come You are a caretaker of somebody of whose condition You know next to nothing?
Daisies
I would get her onto this website so she'll learn that she's not in this alone. There is a whole world pf people that are like her or worse. Tell her about Stephen Hawking. He communicates through a computer.
Also as for wheelchair sports, there isn't a sport that hasn't been done in a wheelchair. Does she use her upper body at all? Powerchairs are a little tougher. Perhaps wheelchair soccer?
Check out this organization. The have a ton of programs and equipment for disabled people. I learned to ski through them and I just rented a faster handcycle from them for my triathlon on Sunday.
http://www.nepassage.org/
They're a great bunch.
Also,
I think it's really important that you do your best not to see her situation as "unfortunate"....praise her more, and pity her less. She probably sees you a LOT because you are her caretaker, so you can help buld her self esteem by giving her confidence by treating her as "normally" as possible. As was mentioned, there are TONS of teenage girls who think that there is something "wrong" with them that keeps them from getting a boyfriend. If they think it, then that will show through them when they are meeting and talking with boys. I think this site would be excellent for her to meet people who know what she's going through.
As for her talking online...maybe transition to a webcam? That way, she can practice speaking but it is still online...if she is really confident and sure of herself, this may help her become that way in real life! (because you are talking like in real life, but you still keep some anonymity because the person you are speaking to isn't actually right there. She can also type if speaking tires her, or she gets really excited about something.
Nightengale: Others can disagree but I sure don't "make the best" of my CP. Just like I don't "make the best" of being a girl. Neither are tests, neither are bad things that happened to me. There are bad things that have happened to me because of my disabilities and illnesses but they are things people did, out of prejudice or insensitivity. Not things that were inevitable just because of my disability.
I totally disagree with you and feel that CP itself is a bad thing that happened to me!!!!!!! BUT bad things happen tp everyone on the planet at some point in their lives. I also don't believe that everything happens for a reason or I was made like this or any of that bunk. It just was a random thing and I just need to work to make the best life i can, just like every other human in the world. Who wouldn't like to have millions of dollars? But most of us don't, life goes on.....
I am not into sports and I don't beleive adaptive sports has to be a part of everyones lives. I agree with the others that just treat her like every other 17 y/o girl. Don't pity her, ask what she want's and support her.
Hi curious!
Question-- are you new to the Personal Care Assistant field? or is it just that you're new to this particular disability?
Having said that-- here's what I can say:
In my personal experience, having been a 17 year old girl with CP without any effect on my speech.
1. I didn't find my self advocacy voice until I was about her age.... even then it was only because I was taught in school that I would need to learn to speak up for myself because my family members wouldn't always be there to speak for me.
2. I have parents who never limited me and just made accomodations when I needed them... I was allowed and encouraged to get involved with all types of activities-- in school and out. If i fell on my face (literally or figuratively) they were there to pick me up so I could try again.
3. I was expected to not mouth off to adults and to follow house rules, just like my brother.
4. I was expected to do as much for myself as I could do, I was never put in a bubble and protected from the "cold cruel world"
5. I'm shy until I get to know people, trust takes an awful long time.
6. I prefer to let people get to know me through phone conversations or my writing and on the internet-- that's the great equalizer... no one can see me and I don't have to reveal my disability until I'm ready. The real me breaks out of my not so functioning body and people are not put off by the "noticeable" aspects of my disability.
7. I watch everything-- but I wasn't always like that -- I had a friend that taught me how to stealthily gather information.
8. sometimes i just didn't care... I had a crappy day or a major attitude and just wanted to be left alone-- sometimes it was a major case of PMS.
9. The "entourage factor"- sometimes for me, knowing that I need to have help and that there is someone with me almost 24 hours a day 7 days a week, cramps my style-- it's hard enough to get a date or be yourself when you are 17.. add in the fact that you have this other person, usually older with a "chaperone" or "parent" vibe tagging along wherever you go.
One of the things that attracted me to my very first "serious" boyfriend was the fact that my mom didn't know him from birth. It sounds odd to say but life with a disability can be even more awkward when hormones start to surge and the only accessible "eligible" dating candidates are people that have known you since childhood. very confusing feelings, kinda like when your best friend has a crush on your sibling and they keep telling you how cute and dreamy your sibling is. my friend said that about my brother a few times and all I could say was: "eewwww .... he's my brother!"
10. My last piece of advice is this: It's best not to bite the hand that feeds you. yes, that's figurative and literal. I understand that there are things that I need assistance with. I know that If i "bark" orders at the people that help me-- they won't help me (true-- I had an assistant that left me in my bathtub because I told her that I didn't appreciate that she violated my apt complex rules by making an unauthorized copy of my keys-- it's a security violation that puts the entire community at risk) I had every right to be upset. I didn't raise my voice, but still she wouldn't help me out of my bathtub until I "apologized for my attitude".
-- Note: she was removed from my home shortly after that event. As I said-- I was taught how to use my self advocacy voice.
