Kids' questions - Cerebral Palsy Message Board

Steffers2318 · 07-26-2005, 01:47 PM

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"?

Freestyles · 07-27-2005, 10:45 AM

Quote:

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.

FS

Newtocp · 07-29-2005, 11:28 PM

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

JellyRJFan · 07-30-2005, 02:20 AM

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

Alinka · 07-30-2005, 04:58 AM

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...