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OrbOfConfusion
05-12-2004, 12:29 PM
Last weekend we went to a family BBQ and my kids got to play with other kids outside. And of course they were all running around like wildcats and getting filthy with dirt... lol. I had to keep a close eye on my daughter because she was youngest and was trying to be a copycat.

Anyway, two of the older girls (4 & 5) asked me why my daughter (2) couldn't do certain things such as stepping up on a porch step or holding onto something with her right hand. It kinda caught me off guard because I never thought about having to find a gentle way to explain her cp to her peers. So I said "Her arm and leg are just a wee bit weak."

I have thought about what I said alot, wondering if that was the right thing to say... especially in front of my daughter because she understands what is being said around her. Does anyone think I said the right thing? Or are there any better ways to explain the situation to youngsters?

Thanks,
Melissa

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Strawberry1
05-12-2004, 03:19 PM
Anyway, two of the older girls (4 & 5) asked me why my daughter (2) couldn't do certain things such as stepping up on a porch step or holding onto something with her right hand. It kinda caught me off guard because I never thought about having to find a gentle way to explain her cp to her peers. So I said "Her arm and leg are just a wee bit weak."

I have thought about what I said alot, wondering if that was the right thing to say... especially in front of my daughter because she understands what is being said around her. Does anyone think I said the right thing? Or are there any better ways to explain the situation to youngsters?



I'm not an expert on child matters, but I think your explanation was OK for 4 & 5-year olds.

Of course I can't speak for your daughter, but I don't think she felt bad when you talked about her arm & leg. Children have a really relaxed attitude towards these things. When I was 2/3/4 years old I didn't even realize I was disabled. I just thought that my physical differences (in the right arm & leg) were just normal variation, in the same way as some people have blue eyes and some have brown.

Zagreus
05-13-2004, 09:30 AM
I think you did fine. The trick is to explain things in a way little people can understand. As they and your daughter mature, your explanations can become more sophisticated.

And honesty is absolutely important. The more open you are, the more open and honest your daughter will be able to be. You're modeling for her how she should react when people ask her.

As soon as my son was old enough, we began referring to CP and Cerebral Palsy. And we also talked about his stiff leg and arm. He's soon to be 10, and if anyone asks him, he's quick to respond by telling them he has CP and will explain what that means. He doesn't take offense at their asking, although he confesses that he sometimes finds having to answer other children's questions a bit tiresome. But he says he'd rather explain it to them than have them wonder. He's quite open and honest about having CP and about his frustrations when he talks to other people. I'm quite proud of him -- he's far more mature about these things than I would expect a child his age to be. But the most remarkable thing is that most of the children he talks to about CP show a genuine interest in understanding more about CP is and what it means for him. Very few of them have ever shown a negative reaction.

That's our experience anyway. Hope that helps a bit with your questions.

jennirb
05-14-2004, 05:16 PM
What you said sounds good to me. What we told my son is that they were her "lucky arm and leg" like on Finding Nemo. And that she was also born that way. And that she can do alot of things, it is just harder for her, like Nemo. It kind of puts it on his level and he thinks she's kinda cool.

Zagreus
05-14-2004, 08:46 PM
What you said sounds good to me. What we told my son is that they were her "lucky arm and leg" like on Finding Nemo. And that she was also born that way. And that she can do alot of things, it is just harder for her, like Nemo. It kind of puts it on his level and he thinks she's kinda cool.


That movie is a blessing for children with disabilities and their families. Nemo's adventurous spirit is such a good role model for children (and adults) facing challenges and obstacles. I was so pleased with that film.

My son also really took to the Xmen -- because to the outside world they all appear to have some kind of disability but in reality they have hidden strengths. It really touched something in him. Of course, all the action sequences and battles didn't hurt either as far as he was concerned.

all right, end of ramble. sorry.. ;)

musicmaker650
05-14-2004, 10:01 PM
Most children will accept someone who is different if the are exposed to people at an early age. The movies Xmen and Nemo are great tools to open discussions about this subject for sure. I really enjoyed both movies. I am a child of 54 years :)

OrbOfConfusion
05-15-2004, 01:27 AM
That sounds so sweet about the inspiration from those movies. Those are great ideas.

I believe self-esteem is the most important aspect of a person. That's why I asked about explaining cp. I don't want to explain it in a way that would make my daughter feel uncomfortable. My daughter is fine and happy. Though I really worry about the future, like when she is a teenager. But then again, she does have her daddy's "tough" attitude.

Take care,
Melissa

musicmaker650
05-15-2004, 03:27 PM
I agree on self-esteem being important, but with the arrival of "mainstreaming" I see a lot of young adults having CP, with no real idea of who they are or what CP is. I went to school with a lot of kids with various degrees of disability. A lot of kids never made it past their teen years. They died... This is a great lesson for those who feel sorry for themselves. "There is always someone worse off than you". If we all could know a person with Cystic Fibrosis or Muscular Dystrophy, and what they deal with, we would not be so inclined to feel sorry for ourselves. Self-eteeem comes from a good sence of self-worth and pride in oneself. Helping, and understanding others is a good was to build self-esteem too.

randadell
05-20-2004, 01:43 AM
Orb: i think I asked you this before on another thread but cant remember which one. Are you from Louisiana? Your hospital story about requesting records and not being able to see you baby for 10 hours. I was not able to see my son for 12 hours. i was wondering if we may have delivered at the same hospital. If Im wrong about you being from La. Im sorry I though I read it in one of your posts. i hope to hear more from you on your experience, we can compare notes. Thank you.

randa

OrbOfConfusion
05-20-2004, 02:48 AM
Yes, I am in northwest Louisiana. I don't mind sharing my experience so long as we keep locations somewhat vague. The hospital I delivered in starts with "W"... I would whether not announce it's name on-line but if you delivered there you would know which one it is.

Take care,
Melissa

randadell
05-21-2004, 01:54 AM
My hospital didnt start with a ''W'' but if its the one I think it is I call it a baby mill because so many kids are born there. Their NICU holds up to 70 babies at 1 time. I was at a smaller hospital that only keeps 5 to 12 babies in the NICU, but OB services seem to be lacking now that I have talked to other woman who delived at the same hosp I did.
One girl I know was preg w/ quads. She was in labor for 17 days and had 7 epidurals. 2 of her babies were born naturally several days apart, 1 of which stayed in the birth canal for 4 days. 2 of her babies were born by c section a few days after that. she was only 23 weeks preg. She deliverd her last 2 just a few days before my son was born, sadly just one of her children lived. at the end of this month she is finally going to bury her 3 babies.
thanks for replying to me. :wave:

KIDSAREGREAT!
05-28-2004, 12:48 PM
I think you did fine. The trick is to explain things in a way little people can understand. As they and your daughter mature, your explanations can become more sophisticated.

And honesty is absolutely important. The more open you are, the more open and honest your daughter will be able to be. You're modeling for her how she should react when people ask her.

I agree! :) I never wanted my child to feel akward or embarrased when people asked, like there was something to be ashamed of. When my son was too little to answer, I would say "his legs just work different then other people." usually that's all it took. Sometimes I'd say "thats the way God made him." Now, my son is older and chooses how he wants to explain it, if he even wants to! He usually says "I was born like this"
I think it's important to teach them to be proud of who they are and focus on all of the things they CAN do. You could suggest things to play that your child can play too!

OrbOfConfusion
05-28-2004, 02:28 PM
Hey there KIDSAREGREAT,

I think it's important for all children to be proud of theirselves too. I do my best to keep everything possitive for my daughter. Since she is two she probably doesn't really think anything about her cp anyway. I am more worried about it as she gets older. I want her to love herself and be happy the way she is. So if you have any advice for these kind of things, please let me know.

Take care,
Melissa

musicmaker650
05-28-2004, 03:25 PM
Yes Melissa,
you're so right about being positive for your daughter. One thing you could do to reinforce strong self-esteem in her as she grows older, is to introduce her to other kids with disabilities. Children that use wheelchairs, canes and walkers. Teach her to care for others. Teach her a love for animals too. This is good advice for ALL children... I'm sure adults could benefit from this too.

Strawberry1
05-29-2004, 06:17 AM
One thing you could do to reinforce strong self-esteem in her as she grows older, is to introduce her to other kids with disabilities. Children that use wheelchairs, canes and walkers.

Hmm. I must say I'm not no sure about this.

When I was 6 years old, I spent some weeks at a children's neurological hospital ward after an Achilles tendon surgery. There were children who used wheelchairs etc. In general, they were nice as people, but I didn't feel I had a lot of common with them, because their lifestyle was very different from mine (I could walk and run almost normally).

Afterwards, I think I could have benefited more from the company of kids with milder physical disabilities, because their situation resembled mine.

But of course, different people have different experiences/opinions. And anyway it's good for any child to be introduced to children with severe disabilities, whether that contributes to one's self-esteem or not.

OrbOfConfusion
05-29-2004, 08:12 AM
Hi Strawberry and musicmaker,

My daughter has a cousin who is eight and has a very severe case of cp. He is non-verbal, blind, in a wheelchair, and is totally unaware of his surroundings. Since we see him fairly often, I'm sure she has realized he is part of the family. She usually just stares at him as if she is waiting for him to look at her or talk to her like everyone else does (this breaks my heart for both of them).

So really, she doesn't have much in common with him because she can walk, play, etc. I think she has realized by now that he is different. Although, she sees that he is loved and cared for like every other family member. So maybe she will get the message that no matter how different someone is, that person will be loved.

I think it is good for a child to see other children with disabilities and how they are accepted. Though I do agree with with you strawberry about children having more in common with kids of similar disabilities. It almost seems like a natural human characteristic for people to have friends who share the same interests, abilities, and mentality.

Anyway, both of my kids might be getting puppies (beagles) this summer from our neighbor. I'm sure they will love them.

Take care,
Melissa

musicmaker650
05-29-2004, 01:48 PM
I understand what you both are saying... about the wanting to be with friends closer to your type and mentality. I'm just pointing out, that when anyone gets involved with others with disabilities, severe or not, there's no real time to feel sorry for yourself. We all have difficulties and deal with problems daily, but we never need to feel that we are worthless. Caring and understanding others, would benefit anybody. The World would be a better place :)

Strawberry1
05-30-2004, 02:50 PM
So really, she doesn't have much in common with him because she can walk, play, etc. I think she has realized by now that he is different. Although, she sees that he is loved and cared for like every other family member. So maybe she will get the message that no matter how different someone is, that person will be loved.

I think it is good for a child to see other children with disabilities and how they are accepted.

Yes, very true. On the other hand, IMHO it would be good if she had contacts with milderly disabled children too, because of peer support. Let's face it, people with milder disabilities have many different problems from people who are severely disabled - for example "should I tell about my disability when I'm in a job interview". (Of course, that is not an acute problem for a 2-year old :)

And it is also very important to introduce her to such disabled *adults* - either in real life, or through books, magazines, tv programmes etc. - who are working, have families, achieve interesting things. Knowing about such people would also be important for her self-esteem.

sassysweetie
05-30-2004, 07:58 PM
I'm a right hemi, and my mother always said that "They're just a bit weak. She was born that way." I was a very precocious child because I am not affected mentally, so I used to explain to other kids. Most of the time they were interested and I got a positive response. However, I have also been taunted because if you haven't known me my whole life, you take to my disability strangely. I've been called every term that a parent with a disabled child hates to hear.

Now that I'm older, I advocate for myself constantly because even most adults are taken aback that I'm so intelligent verbally, yet have a disability (my mother doesn't want it on my record that I have CP). They're not sure how to take me, because I'm mild/moderate....I'm more severe than a mild case, but not very severe. I also tend to have the occasional speech issue....a mild touch of expressive aphasia (I can't always get my words out like I want to) and spitting when I speak.

This year we did a story in our English class about living with a disability (specifically motor impairments and hydro) and I got up and spoke to every English class. I've always been very open. I hope to advocate to all of my teachers and increase awareness. Let your children be open....they'll develop my most important quality: a sense of PRIDE!

nutcase16
05-30-2004, 08:28 PM
I did a research project on cp, too and got an A :D I am open with it, because everyone accepts me. In fact, most of the time I think they forget I have it :D
I explained it the way others have when I was little.

sassysweetie
05-31-2004, 12:13 AM
You deserve that A, Mollie! You've lived with it forever....you probably didn't need to do much research!

OrbOfConfusion
05-31-2004, 08:35 AM
Hey sassysweetie and nutcase,

I really hope both of my kids will be proud and open like you two. When I was in school, I can remember most handicapped kids had more positive attitudes than other kids. I used to tutor a handicapped girl on violin and she had the best personality. Even though she had much difficulty with it, she never gave up... she even wrote "mini-songs" which I though were really cute. :)

I guess tough experiences make a tough person... not "tatooed biker" tough, I mean tough inside. Strong, confident, and knowing who you are.

Take care,
Melissa

nutcase16
05-31-2004, 01:15 PM
Thanks guys :D I just love this board, there is so much support. :angel:

sassysweetie
05-31-2004, 05:03 PM
Hey sassysweetie and nutcase,

I really hope both of my kids will be proud and open like you two. When I was in school, I can remember most handicapped kids had more positive attitudes than other kids. I used to tutor a handicapped girl on violin and she had the best personality. Even though she had much difficulty with it, she never gave up... she even wrote "mini-songs" which I though were really cute. :)

I guess tough experiences make a tough person... not "tatooed biker" tough, I mean tough inside. Strong, confident, and knowing who you are.

Take care,
Melissa

I actually take piano now and voice. A lot of it depends on if the other person is open-minded. I absolutely love my piano and voice teachers. They are a husband and wife team, and they've both adjusted the lessons away from the typical concepts used with able-bodied students to whatever makes me comfortable and they're both willing to learn and adjust. If more people were like that, the world would be a better place.

I agree about being tough too, though most AB's tend to confuse "disabled and tough" with "jaded" or "cynical". I know a teacher (not mine, thank God) that knows that I am disabled, yet when I attempt to explain my opinions and views, tends to repeatedly call me jaded. I am not jaded, I am a very positive person, but when others harass me, I am outspoken and opinionated. Every handicapped child has the right to defend themselves against people that think like that. On the other hand, I have a teacher/friend that is exactly the opposite. Without him, I probably wouldn't survive that torture day to day!

Take care,
sassysweetie AKA CG101

nutcase16
05-31-2004, 10:53 PM
I took piano lessons, too. I did pretty well, and the paino teacher was extremely nice, but I'm not quite sure I got everything that I could get out of the experience. Same goes for 7 years playing the clarinet, but hey it was fun...maybe eventually I'll look more into people who adapt for me. UGH same goes for driving....sometimes it really hits me that I don't have my license and I get all depressed, partly because I know I am not that bad, but my mother gets all nervous driving with me, and I can't stand it. She paid for driving lessons last summer, but that teacher was a joke. Now, I only have one summer to learn before I go to college in August. I will do everything I can to avoid using hand controls too. UGH sorry, I took over this thread. Don't mind me.

OrbOfConfusion
06-02-2004, 06:19 AM
Hey Strawberry and Musicmaker,

I have noticed that my daughter tends to enjoy playing with AB kids than with kids in her class. The children in her class have different disabilities other than cp, though none severe. She loves school but her teacher said she tends to be passive. But at family gatherings she really enjoys playing with her cousins (all the young ones are under 5). She absolutely loves it! Her cousins her very good with her. She is the "spoiled, rotten baby of the family"... lol.

It was one of her cousins that asked what was wrong with her hand. They still play just as usual and they are always sure to include her in their "runabouts".

Did you tend to prefer the company of AB kids when you were children? It seems like my daughter would get tired from all that activity with her cousins, but she is so ambitious and determined to keep up.

Take care,
Melissa

musicmaker650
06-02-2004, 02:59 PM
Hi Melissa,
I had a neighbor Bill, who was my age (5) and he was AB. We grew up together. He would pull me in a wagon, and later, he would carry me on his shoulders. I had trouble keeping up with the AB kids, until I was a teenager. I would have leg operations in the summer, and have to learn to walk all over again. This was a "normal" thing for me until I was 13...

It sounds like your daughter is doing fine. She "knows" disability as well as the AB life. I couldn't believe that it was possible for a person born with CP to have no idea what CP was, until I joined this site. For a person to grow up with no understanding of people, and their problems, is indeed a sad thing...





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