Children coming up to me and asking, "What's wrong with your legs?" or, when I'm using my walker, "What's that?" used to make me uncomfortable when I was younger (maybe because my family never talked about it, they just acted like I wasn't disabled, so I never knew what to say). Now, though, I realize that they don't mean anything by it, they're just curious! Just coming out and asking is way better than the staring that most adults do...

Anyway, I usually say "My legs just don't work the same way yours do" and I call my walker/wheelchair "my car that I use to get around" or something like that...but I was just wondering if anyone had any better "lines"? :)

Children coming up to me and asking, "What's wrong with your legs?" or, when I'm using my walker, "What's that?" used to make me uncomfortable when I was younger (maybe because my family never talked about it, they just acted like I wasn't disabled, so I never knew what to say). Now, though, I realize that they don't mean anything by it, they're just curious!

Absolutely! You gotta love the innocence of kids.. Oftentimes I wish adults were half as fourthcoming!

I remember getting these kinds of questions as a kid, and like you I was a little baffled at times as to how to answer. Usually I just said this is something I was 'born with' and that I didn't have any broken bones etc.

You should explain as much as you can to kids but don't make it too complicated... Something like my legs don't work too well and I need some help with balance works just fine. :)
We've come a long way since the days of institutionalizing those with disabilities but the more WE can educate future generations the better things will become... I emphisize we since in my opinion 'we' need to be better self advocates.

You mention as well that your parents never really talked about your disability... I can relate, and I know most others can as well.

This ideaology that ignorance is bliss is not the best approach.. I don't mean to point any fingers of blame as I can only say this in hindsight.

I understand what most of the parents out there intend to accomplish by using this approach - The fact that we're no different from our siblings and from our peers... This is a tricky balance. While you don't want your child to focus a whole lot on his/her differences, it's important that they become comfortable in their own body at a young age... If you ignore the disability entirely, so will your child and this eventually leads to the "lesser AB feeling"
that we discussed earlier threads... Ultimately it will hinder self esteem later in life - particularly in adolesence as this is a fragile time for everyone.

I've worked with disabled kids on self esteem issues... I intend to do some more work with 'mainstreamed' teens in the 'trasition phase' to adulthood, during which time most of us are left to fend for ourselves.. I've expressed my discontent towards the support systems in place for adults with CP so I won't do it again. :nono:

FS

Fs,

As a parent of a child with cp this issue is a very fine line for me. I hear this a lot from young adults with cp and it has made me think a lot but it also is confusing to me in exactly "what' you guys are asking or desiring families to do in regards to this issue. We live in a society today that focuses on labels. A kid no longer has just cp, now thier labeled with autism, adhd, cortical vision impariment, dyspraxia, develpmental delays ect....... thats just a few of the 'labels' I see put on many kids with cp. Its mind boggling and overwhelming to parents. I had a get together today with some other parents and children who have cp and we all talked about how hard it is to go and focus each and every day to their therapies, evals and school and constantly focus on 'what your child can't do' with these professionals. Its heartbreaking and even painful to love a child so much yet spend most of our days focusing on the negative about that child. My son is 3 right now. I can't imagine how much more tired and down I will be about this when he is older. Furthermore, I have other children who already get the short stick of my time and attention because im carting him around to therapies, school, drs. or working on his skills at home ect..... I would never deny that my son has struggles and that he is amazingly overcoming them I am thrilled and proud of the work ethic he has had to develop at 3. In fact im sure we will talk about his cerebral plasy sometime when he is a littl older indepthly instead of in passing/matter of factly like its mentioned now but I canot and will not treat him differently than my other children. I see many of the people that have cp pn messageboard complain about how their family dealt with the cp and how wrong it is. I wish they could be clearer about what would be a 'good' way to deal with it. The truth is I doubt most famlies made an effort to "not talk about it' but that was how their child has always been and by the time she got older it didn't seem that unusal to them.

Im not meaning this to come off frustrated just meaning I would really like a clear explanation of just exactly you guys are meaning in you statements.

Thanks.

Steph

Steph,

You said that you cannot and will not treat your son differently than the rest of your children. I know you only want the best for him, but the fact is that he IS different, and needs to be treated as such. You can't treat him as an AB, it will just confuse him. I always hear ABs say about PWDs "they just want to be treated like a normal person". I think that is so wrong. I mean, just leave the normal out of it and treat them like a person. Who is to say what is "normal" anyway? Normal to me would be my parents treating me like I have CP, normal to them is treating me like my other sisters. I absolutely hate it. CP is part of who I am, and I love myself, CP included!
By not treating PWDs any differently I feel like it's just sweeping the disability under the rug. Now, I don't mean you have to should from the rooftops "my son has CP!!!", but I think embracing it would be the best thing to do.

Hope I was able to help :)

I think I can relate to both approaches - personally I believe that it is very important for a person with CP to become comfortable with his or her body and know it is OK not to be able to do something. I think that the tricky part of CP is that what we lack is visible at first sight, whereas many of the "disablities" that able-bodied people are just invisible - if they don´t want, they don´t need to show these "disabilities". For example, I am very talented at languages, but I know many able-bodied people, who are absolutely hopeless in them.

Anyway, my point is this: if you teach your child it is OK not to be perfect, you´ll help him a lot with overcoming the CP. I have had problems with having to be perfect to compensate for the suffering felt I caused to my parents by being disabled. I remember thinking as a young child: Oh, I have to be the best student in class to be able to compensate for the disability....it put me under a lot of preasure.

Also, it was very diifficult to deal with times I was in pain and my parents ignored it because they did not feel like coming to terms with it - they couldn´t treat me differently and tolerate that I was tired or something...

Im not meaning this to come off frustrated just meaning I would really like a clear explanation of just exactly you guys are meaning in you statements.



IMHO you should treat him as somebody who has certain special needs but is basically a normal child. CP is only one aspect of him. He's different from other people but so is everyone else.

Of course it certainly can be difficult to be responsive to his special needs and at the same time try to avoid singling him out. Don't deny his disability, but focus on his strenghts.

On the other hand, don't glorify him. His disability does not automatically make him brave or wise etc.

Don't deny his disability, but focus on his strenghts.

On the other hand, don't glorify him. His disability does not automatically make him brave or wise etc.


I think Strawberry just summed up everything we were trying to say :)

For me, I wish my parents had adressed the disability instead of just ignoring it. What I mean is, they NEVER ONCE sat with me and just explained what "cerebral palsy" meant...One of my major complaints is I don't even think they tried to understand most of the symptoms, they just expected me to be like anyone else, and when I researched CP myself when I was older and would say, "Hey, this is because of CP", they wouldn't believe me. When I was younger, though, and kids would question me about what was "wrong" with me, I had no idea what to say, and I would be really embarassed. To my family I was completely normal, which isn't a bad thing, but then again it IS a bad thing because to the outside world people with disabilities are different...and if you don't adress it from the beginning, your child will feel insecure around his peers as he gets older, which DEFINATELY happened to me...

I just think it'd be a good idea to explain why your child is different--what CP is--(at the appropriate age, like you said), and how others might react, but also make sure to say that he won't be getting any shortcuts from you because of it! ;)

Thanks everyone. I 'think' maybe im getting what you mean more. You know its a hard decision. The other day we were visiting family and a guy said to us "I bet when "g' is older he will be tripping over his feet all the time." my dh and I looked at each other like "what is he thinking???" so I said "he has a muscle disorder so yeah! probably he will' the guy kind of sputtered and said 'I didn't know.... you can't tell I just meant hes so tall for his age and you tend to be clumsier" You can tell quite easily if you put him side by side another 3 year old but I realized we are in an "awkward' position with his disablity. its invisiable to some(although his speech or lack there of is a farily good indicator but it still affects him in almost every aspect of his life) we are planning on homeschooling and ive always planned on incorprating a unit on cerebral palsy in our studies along the way. I want him to understand cerebral palsy but I also don't want him to use it as a crutch?? Does that make sense? My dh and I do see him as 'normal' and so I do think its probably hard to incorporate 'acknowledgement'. Obviously we give G help where he needs it. I would expect a typical 3 year old to be getting there shoes on and off by themselves. With G I expect him to help but I don't push the issue. I do treat him differently in subtle ways like that but I can't make him the 'center' of our family or the 'family hero'. I admire him, just like I admire my other children but There has to be a balance. THat proably wasn't very clear .... but thanks for your insight. I do think its important to prepare him for the realities of the outside world.

Steph

Steph

Steffers, I was thinking the same thing last night after I replied to this tread! On occasion my parents would talk about it with me if A). I was going to have surgery, or B). I asked them. But they never brought it up, so after a while I just stopped asking. We never talked about it. Then when kids would ask me what was "wrong" with me I wouldn't know what to say and I would get embarassed.
When I started REALLY researching CP about a year and a half ago I found out all of these things that were going on with me were because of my CP, and my family didn't believe me! For example,, I have pretty bad lumbar lordosis, and my family thinks I just stand with my back curved because I want to. They're always telling me to straighten up, but it's nearly impossible for me (because my back is bent and because if I straighten up I will fall over). One thing that bothers me though is that they never tell me to straighten out my scoliosis, just the lordosis. I think that's because they never made the effort to understand lordosis, especially in connection with spastic hamstrings and tendon lengthening, but scoliosis is a more widely known condition. It's just annoying.

Steph- my mom and dad will still help me with my shoes if I ask them... and I'm nearly 20 ;)

I totally understand what you're saying, JellyRJFan :)

And Steph (nice name, by the way), we're not trying to say you should treat him as "the family hero"--you should expect him to make the most of the abilities he does have, just like anyone else...what I AM saying is, you can't treat him as if he doesn't have a disability at all, because others outside of your family won't treat him that way, especially as he gets older. Young kids generally accept anyone and everyone, but as you get to the teen years, if you're not like your peers it can be very awkward and you feel like you don't quite fit it anywhere.... UNLESS you help him develop a "the disability is there, but so what?" mentality from a young age, by talking about it and making him feel comfortable with it! :D Does that make sense?

One of my major complaints is I don't even think they tried to understand most of the symptoms, they just expected me to be like anyone else, and when I researched CP myself when I was older and would say, "Hey, this is because of CP", they wouldn't believe me.

On the other hand, I've noticed that information about the more subtle, less clear symptoms of CP (like lordosis, overactive gag or startle reflexes) is not easily available.

UNLESS you help him develop a "the disability is there, but so what?" mentality from a young age, by talking about it and making him feel comfortable with it! :D

That's the most important point, IMO.

On the other hand, I've noticed that information about the more subtle, less clear symptoms of CP (like lordosis, overactive gag or startle reflexes) is not easily available.

True, true.... and doctors for some reason generally don't tell parents about these things, which makes no sense to me.........

Absolutely, I struggled so much with some of the things - like when I tense up and start shaking visibly when I am nervous, which I can´t control (clonus) and everybody just thought it was because I was hysterical or something....
now I know it´s CP and it makes life so much easier :)

Its heartbreaking and even painful to love a child so much yet spend most of our days focusing on the negative about that child. My son is 3 right now. I can't imagine how much more tired and down I will be about this when he is older.

Steph,

I can understand your frustrations as a parent... We're fortunate to live in an era where information is few mouse clicks away. Most of our parents didn't have this luxury.. They raised us in the best way possible, given the information they had... I give my parents all the praise in the world for that. Like you said raising a kid has it's challenges and can be emotionally draining at times.

We're (myself and the other posters included) not trying to confuse parents any further by telling them to treat their child differently because he or she has CP.. As Steffers says, the emphysis should be on becoming comfortable with being a little different.

In the early years, this means talking to your child about CP, not in a negative way, just acknowledging that it's there and letting him know that there will be some curious kids (and adults) out there who will ask questions.

You can be as creative as you want with the answers.. Anything from "my legs don't work like yours do because I was very tiny as a baby" to "I need some help with walking because my balance is a little off " is age appropriate and works just fine... It's important that your son can answer these kinds of questions with ease.

As he gets older, things get a little more complicated... At this stage he can rely on his "learned confidence" to address the more complex issues of developing a positive circle of friends, Asking girls out on dates etc.

The key is to encourage open and communication.. Let him know that you're there for him and he can discuss anything with you, no matter how trivial. I remember that this was a bit of a hurdle for me in that I didn't discuss certain things with my parents for fear that I would put them in an awkward spot or otherwise hurt their feelings.

Finally - see if you can find any mentors for your son. (Yes, we are out there, just hard to come by). No one can relate to his situation better than someone who's been through what he's going through.

Hope that helps some.. Feel free to post any questions.

FS

Thanks,

I do think I will want to find a mentor for my son when he is older. Great idea.

Steph

Ps. your right that this is a totally different era of raising children with sn. I have heard of lordosis from day one. :)

A mentor's a good idea, and you could also try to find a camp for kids with CP or disabilities in general for when he is younger....I never went to one, but I know I would've loved it. :)

Here's one for you.. I hate it when a child ask their parents mommy or daddy why is he walking like that? And the parents tell the child to shut up or be quite. This has happend to me many times.. I just turn around and tell the the child that I have CP and it affects the way I walk, and that's the end of it.. One time I was walking in the mall shopping and a child asked his mom what was wrong with me and she said to the child to be quite as low as she chould (thinking I wouldn't hear, I guess) and I stopped turned to her son and just flat out told him why I walked the way I do.. Then I looked up at the mom and you should have seen the look on her face, it was priceliess..

Another time a lady I worked with had her young son with her most of the day and her son kept asking her why I walked like that since I knew the lady I let it go for a while to see what would happen and her son kept asking and she never told him and the last time I couldn't let it go because she yelled at him right in front of me.. I told her not to yell at him and told him myself what was going on with me and the way I walked.. After her son was gone she came up to me and said she thought it would offend me for him to ask, I told her that it was more offensive that she didn't just tell him herself the first time he asked her or at least ask me to tell him for her if she was really worried about offending me..

Interesting. Its are when you are 'ab' to know what is appropriate. My 3 year old can barely talk but he was looking very inquisitively at two men in wheelchairs (i assume they had cp) he turned around and kept looking so I said they have cerebral palsy too. they use a wheelchair so they can go places too. THat seemed enough for him because he kept walking then but I thougt 'what if they heard me and I was rude' lol, Its hard knowing what is politically correct these days.

Steph

Interesting. Its are when you are 'ab' to know what is appropriate. My 3 year old can barely talk but he was looking very inquisitively at two men in wheelchairs (i assume they had cp) he turned around and kept looking so I said they have cerebral palsy too. they use a wheelchair so they can go places too. THat seemed enough for him because he kept walking then but I thougt 'what if they heard me and I was rude' lol, Its hard knowing what is politically correct these days.

Steph

That wouldn't offend me if I was the person in the wheelchair, I guess everyone reacts differently though...although they might not've had CP, that wouldn't matter to me, since your son has CP and you're just trying to explain it that way. Who knows, maybe one day someone will say "Actually, I have _____" and your son will learn more about different disabilities. :)

...I thougt 'what if they heard me and I was rude' lol, Its hard knowing what is politically correct these days.

All this emphysis on "political correctness" tends to strike a nerve with me. I mean sure I don't broadcast to the world that I have CP, but if you ask me about it, I'll tell you. I much prefer that than the "be quiet" approach since it's perfectly natural to be curious and ask questions... I don't think it's ever a bad idea to ask, but I wouldn't pop the question as the first words out of my mouth when I meet someone... Some people are more sensitive about things than others but the quiet approach only makes things taboo and awkward to discuss. If PWDs got asked these types of questions on a regular basis, maybe the taboo wouldn't be there... Isn't that what the so called advocates and lawyers tryed to accomplish in the first place?

FS