About the whole "she's high functioning and doesn't understand that my kid isn't toilet trained" bit

[conuly]

Well, kinda about that!

Aside from the truly hysterical irony of the whole thread, it reminded me of a conversation I had with my mom the same day I posted that CNN article about euthanasia. You know, the one which involved infants with, in one case, "severe spina bifida".

Me: What I don't get is the spina bifida thing. Isn't spina bifida, like, nonfatal?
Mommy: Yes, but the thing is...
Me: *eager anticipation*
Mommy: Well, it's a lack of proper development, so for instance a lot of them are incontinent...
Me: Um, yeah?
Mommy: ...and so they're in diapers their whole lives...
Me: *thinking about that autistics.org article* Yeah, and?
Mommy: ...and they walk strangely....
Me: ...
Me: You've got to be kidding me.

I'm still not sure if she meant that seriously or was just paraphrasing the ideas of people who worry about their poor crippled children, but I was *very* freaked out.

Comments

[feathered.livejournal.com]

I was under the impression that severe cases of spinal bifida are, or at least could be, fatal. I was told that by a boy with spinal bifida who wrote a paper on it ... maybe he was mistaken?

[conuly]

That might be. In this case, I have no idea if it would've been fatal or not. In terms of the conversation, we were obviously talking about non-fatal spina bifida.

[celticess.livejournal.com]

I've heard that too but there are far more non profound cases of spina bifida than profound cases I'm guessing. But severe and profound you need to take with a grain of salt on things. It still can be indivdiaulistic. My son had a severe-profound pectus excavatum at birth. As a tot it improved to moderate to severe and now it's moderate to mild as he's about to enter his teens. The defect in question can compress and even damage the heart in profound cases. He's been heart tested and respitory tested. Despite how freaky his chest has looked at points in his development he's been fine. Though for other cases at a similar level of affliction it could prove fatal.