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capri0mniThe world at large keeps giving me (un)shiny new things to rant about, lately.
Here's another entry I just posted to![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-community.gif)
gimp_vent. It may show up tommorrow, or the day after:
...
Did anyone else see this report (April 13, 2009), about a new effective surgery for SOME kinds of CP (on American television, broadcast network: NBC)? ...I could not find a simple, dial-up friendly, link to this report online. Maybe someone whose Google powers are greater than mine is, today, could help out.
In this news story, they explained that this is a new surgical technique for some forms of CP, wherein a vertibra is removed from the spine, and the rootlets of certain nerves are cut in order to reduce the severe muscle spasticity that is strong enough to intervere with bone growth in toddlers. And it was reported that for the cases where this surgery is used, there is improvement in 100% of patients.
I have mixed feelings about this.
On the one hand, I'm glad there's a new treatment available that can, apparently, prevent future problems with one surgery, instead of subjecting the child to multiple fix-it surgeries throughout her childhood.
I'm also glad that writer of the news copy called cerebral palsy a "condition," rather than a "disease," and that the point was made that there are many kinds of CP, and this treatment will not work for everybody.
BUT:
It really bothered me that they interviewed the tearful mother who started to sob and get choked up, when she talked about how she watched "normal" children run and play, and how sad she was when she knew that her "precious little girl" couldn't keep up. And, now that she's been treated with this surgery, she'll be able to have friends and play with other children.
I'm sorry. But this just hits me as a heaping serving of wrong with fail sauce.
I grew up with a more severe version of CP than the little girl highlighted in this news story, and I had plenty of friends in school and in my neighborhood.
The kids who really, truly, cared about me, and wanted to be my friend because of who I was as a person, adapted their games so I could join in, and they never made a big deal about it. They wanted to play with me, so we played games I could play. I had a blast growing up, even though I couldn't walk at all.
The difference, was, I think, that my mother invited the other kids in my neighborhood over to our house, and gave us room to play together. And when she took me to the local playground, she helped me get into the center of the action, where I could get on the see-saw, and the swings, and the merry-go-round (round-about, for the Brits).
She did not, as the mother in this story seemed to do, sit with me on her lap on the park bench, getting all teary because I couldn't run after the the other kids when they're racing about playing tag, or whatever.
And I just wonder about how that attitude is effecting her precious daughter's self-esteem.
Here's another entry I just posted to
gimp_vent. It may show up tommorrow, or the day after:...
Did anyone else see this report (April 13, 2009), about a new effective surgery for SOME kinds of CP (on American television, broadcast network: NBC)? ...I could not find a simple, dial-up friendly, link to this report online. Maybe someone whose Google powers are greater than mine is, today, could help out.
In this news story, they explained that this is a new surgical technique for some forms of CP, wherein a vertibra is removed from the spine, and the rootlets of certain nerves are cut in order to reduce the severe muscle spasticity that is strong enough to intervere with bone growth in toddlers. And it was reported that for the cases where this surgery is used, there is improvement in 100% of patients.
I have mixed feelings about this.
On the one hand, I'm glad there's a new treatment available that can, apparently, prevent future problems with one surgery, instead of subjecting the child to multiple fix-it surgeries throughout her childhood.
I'm also glad that writer of the news copy called cerebral palsy a "condition," rather than a "disease," and that the point was made that there are many kinds of CP, and this treatment will not work for everybody.
BUT:
It really bothered me that they interviewed the tearful mother who started to sob and get choked up, when she talked about how she watched "normal" children run and play, and how sad she was when she knew that her "precious little girl" couldn't keep up. And, now that she's been treated with this surgery, she'll be able to have friends and play with other children.
I'm sorry. But this just hits me as a heaping serving of wrong with fail sauce.
I grew up with a more severe version of CP than the little girl highlighted in this news story, and I had plenty of friends in school and in my neighborhood.
The kids who really, truly, cared about me, and wanted to be my friend because of who I was as a person, adapted their games so I could join in, and they never made a big deal about it. They wanted to play with me, so we played games I could play. I had a blast growing up, even though I couldn't walk at all.
The difference, was, I think, that my mother invited the other kids in my neighborhood over to our house, and gave us room to play together. And when she took me to the local playground, she helped me get into the center of the action, where I could get on the see-saw, and the swings, and the merry-go-round (round-about, for the Brits).
She did not, as the mother in this story seemed to do, sit with me on her lap on the park bench, getting all teary because I couldn't run after the the other kids when they're racing about playing tag, or whatever.
And I just wonder about how that attitude is effecting her precious daughter's self-esteem.
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no subject
Date: 2009-04-15 12:17 am (UTC)I'd forgotten for years, the way we forget what happens when we're little kids. But when I was 4 or 5, there was a girl (a little older, I don't know how much) who used crutches to walk who lived next door. Her name was Andrea, and I remember thinking she was absolutely the coolest prettiest girl I knew. We played all kinds of games (including ballerina, and Andrea put on shoes and tutus right wih me and we danced up a storm) and had a grand time. It never even OCCURRED to me, as a child, that anything she couldn't do meant that we coudn't play. There was stuff she couldn't do, there was stuff I couldn't do, so we did what both of us could do, and we were best friends until she moved away. (I think she was the one who taught me that little song about Miss Lucy and her steamboat, though I'm not sure...)
As an adult, looking back, I realize that Andrea's mom was pretty amazing, and while I can't remember particulars (I mean, I remember her mom's general manner of love and pride and matter-of-factness, but no quotes), I would bet that she had a lot to do with how strong and confident her daughter was. And her daughter had a lot to do with my growing up with strength and confidence too.
I wonder what happened to her? I should ask my mom, see if she remembers...
--J
no subject
Date: 2009-04-15 01:20 am (UTC)Yes. This, exactly. This.
When I was a little kid, I played "house" and "doctor" and "superheroes" with the neighbor kids, and also building with blocks, and playing on the swings, and putting on puppet shows, and singing silly songs.
Once I was just hanging out in a park, and wheeled up to a spot where there was an elder man standing. He glanced at me, and asked: "How long have you been in that chair?"
and I answered, matter-of-factly: "All my life."*
His response to that was "Oh, dear. How sad."
I don't remember what, if anything, I said to him after that, but I seriously doubt his childhood was an uninterupted stretch of lollipops and rainbows just becasue he could walk and run "like a normal person."
*as usual, after I left, I thought up all sorts of sarcastic answers, like: "Well, I got out to use the toilet about an hour ago..." Or: "Since I got out of bed this morning."