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.

[atdelphi.livejournal.com]

What little I know: many babies born with spina bifida also have hydrocephela(?) - fluid in the brain, which requires a shunt to drain it. In rarer severe cases, part of the brain is inside the fluid sac, and the fluid can't be removed without causing severe brain damage. In other cases, part or all of the brain may not be present at all. I'm thinking those are the cases that people are saying warrant euthsnasia.

[deathchibi.livejournal.com]

Um, the first crush I ever, ever had, in the 5th grade, was my friend with spina bifida. He was perfectly normal, as far as I knew, save that he was wheelchair bound. Mind, he was a badass when it came to upper boddy strength compared to the rest of my friend, but he was a good friend.

What it is is usually the spinal column doesn't quite cover the spinal cord. Unfortunately, depending on how bad things are, this means that big, honking bundle of nerves isn't protected. Our spines are <3 to us.

Most of them are NT, normal, standard, average, what have you mentally. It's just sometimes there's the shunt thingy problem (Bleah. Sorry.).

I dunno, I guess if it's really, really severe... but most people with spina bifida seem able to get along just fine and are sort of happy their parents didn't euthanize them.

[mortaine.livejournal.com]

Meh. This is one of the problems with euthanasia; it can be used as a tool for what is essentially eugenics. Ew.

[conuly]

In a wheelchair or used a wheelchair, isn't it? Lots of people don't like wheelchair bound.

most people with spina bifida seem able to get along just fine and are sort of happy their parents didn't euthanize them.

*laughs*

I'm sorry, the way you said that makes me laugh.

[latenightparty.livejournal.com]

Don't many autistics walk strangely too?

[conuly]

So I'm told.

[deathchibi.livejournal.com]

Oh, well, he wasn't *tied* to it, nor was it his destiny. I had a politically incorrect brain fart. :(

[deathchibi.livejournal.com]

I walk strangely. Sometimes I'll be doing something and my arm just sort of stays there for awhile until I go, 'Hey, my arm... is out there.'. Or I just lose feeling in the limb altogether and go 'Oh, I have that, don't I?'. But um, I'm fairly sure I'm still the standard NT. It's the oddest thing, my dad thinks I stumble a lot. Though, I've never met an autistic person in person, so I can't say.

[gingembre.livejournal.com]

I think it's more the brain-fluid-shunt-lack of development problems that they were referring to. At leastthat is the impression that "severe" gives *me*.

What is tricky is figuring out how severe "severe" will turn out to be. Sometimes doctors will say "they won't live more than a year" or "they will be blind, deaf and immobile" and then that does *not* happen.

To be frank, if I knew that a child I was pregnant with had SERIOUS defects, I would consider abortion. I don't know if I would abort, but I *would* think about it carefully.

[conuly]

Which is why I draw a line between abortion and euthanasia of infants. *shudders*

[gingembre.livejournal.com]

What about removal of life support? If said infant cannot live off of of medical support, is it the same as euthanasia? Different? How long do you go before you decide? Clearly, the same questions apply for adults.

Me, I have no answers.

[conuly]

Well, I'm refering to a specific article where the infant in question was euthanized. And, as I said when I posted it, I'm not getting into the discussion about assisted suicide of consenting adults, or of removal of life support, because too many people have opinions all over for these things. I'm sticking with my one decision: "termination of life without consent" is murder. Abortion isn't, but that is.

[wakasplat.livejournal.com]

My own basic take on this is that anything used for eugenic purposes (the elimination of a specific group of people, possibly based on the idea that said group of people is not really quite human or cannot have a "good" life as defined by people outside the person, which includes because they're disabled) is wrong. Things can be okay that are not used for eugenic purposes, though. Just as knives can be okay as long as you're not stabbing people with them.

That's oversimplified of course, but it's part of what I believe anyway.

[cumaeansibyl.livejournal.com]

The problem is that I advocate euthanasia and assisted suicide for all adult patients, but I don't trust parents to always act in their children's best interests. On the other hand, there are some birth defects that are always fatal within a few days of birth -- anencephaly, harlequin babies, that sort of thing -- and I don't see the point in forcing those poor kids to live for a few extra hours because there's no way available to end their lives gently and compassionately. There's a difference between "severe" and "non-viable," but a lot of people draw those lines differently; I'd only support infant euthanasia in cases where the child was absolutely going to die no matter what was done, in the interests of preventing unnecessary suffering.

[celticess.livejournal.com]

Your mom is rather uninformed isn't she? My exhusbands gf before me had spina bifida. She walks quite fine. She was born with an open/exposed spine. I had actually seen her scars. She also had 2 kids last I heard and went through that just fine. She is also not incontinent.

My spinal issue may fall under spina bifida. I was told it is a birth defect. I'm not incontinent and I don't walk funny from that. I walk funny from being hit by a car which messed up neurology in my legs, also my muscle problem, and other things which have nothing to do with my spine.

Where did you hear that toilet traning line? I've not heard that one but I've had similar hostile comments leveled at me in the "how dare you let yourself be labeled autistic your nothing like my kid" line. When they forget once we were kids and we all change given time. I think it's not uncommon for adult's that are considered HF and parents of kids considered HF to be hassled by parents of kids on the spectrum with other labels. Some with the kids with the other labels are nice but lets face it their is this group that is bitter and angry or whatever and can't see any light in what they percieve as a very dark tunnel with no end.

[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.

[celticess.livejournal.com]

Well my aquaintance that had spina bifida didn't have hydrocephalus. She did have spinal surgery to close her spine and wore braces tof a few years when she was small. Now doesn't need them and look normal for all intensive purposes.

My daughter didn't have spina bifida she had brain cancer which later killed her. She ended up because of the brain cancer and developing menegitis after a LP(lumbar pucture) needing a shunt. She had a left ventricular shunt for the hydrocephalus that developed. I can tell you it didn't cause her brain damage. I can also say having a 5" tumour the size of a mans fist removed from her little 8 yr old brain only caused mild brain damage. In the sense s he became literal and concrete and developed an LD. She was still intellegent, articulate, etc.

The shunt was in the left ventricle and wouldn't of been noticed under her hair for the most part. It was just a slight bump. Only originally after the surgery could you see the mark of the emptying line that went down to her belly. It faded and you couldn't see it at all nor even most times realize she had a thing emptying just below her belly button.

[celticess.livejournal.com]

I do but though I'm clumsy and all that I don't think it's my autism that messes up my walking. I happen to have spinal microdisc which is a rare thing apprently. I also have nerve damage from being hit by a car to my left leg and also damage to my right leg from another accident. I have also damage to my left arm from yet another accident.(yes I'm accident prone) I also have myotonia and periodic paralisis which are related to muscular distrophy apprently(I didn't realize that til I looked up some info to explain to another what I had one time). Then add in I've got S curve scoliosis and multiple arthropathies... and disk disease... and I'm light sensitive.

So when I walk I tend to look down. This isn't just an eye contact thing it's also problems with UV light and light in general. I may shuffle a bit or limp. But I blame my "gait" as they call it on all my other health stuff. If other autistics walk odd I don't know. I have noticed some seem to be stiff posture wise but I'm not like that myself. I also noticed some like me tend to look down vs up. Maybe they have a light thing too. Other than that I really don't know unless it's the motor clumsyness. *shrug*

[celticess.livejournal.com]

Umm I've had to decide on the life support thing... actually my daughter partly chose that before she died. She wasn't an infant when she died she was 12 and it was brain cancer (2002).

Basically when you know there is no hope there is a decision that has to be made. Eventually though the body would shut down on it's own but leaving it can prolong suffering in alot of cases. As in no hope I mean they will be brain dead or vegitative. And let me tell you it's a hard thing to see your child in a coma dying and I don't care what age the child is it doesn't make it any easier.

My daughter was nt before cancer but she was a premie. I had seen tiny ones on life support. Some of them ended up ok but some ... I think the parents just couldn't let go and accept because their child is pretty much vegatative and severely impared.

[atdelphi.livejournal.com]

*nods* My point was that in some rare cases of spina bifida (which I believe are called cranial bifida) the damage is much more severe than in the regular form of the birth defect. I believe what makes hydrocephalus so dangerous in these cases is that the bones of the skull aren't firm enough and the head becomes overlarge. So, in countries where euthanasia is legal, and in these rare cases where it's evident from birth that there will be no quality of life (i.e. if the brain is absent, or depending on which portion would need to be removed) I suppose it's up to the parents and medical professionals whether or not to keep the child alive through artificial means.

[celticess.livejournal.com]

Oh yes I've heard of that but didn't know the name for it. I thought in cases caught early enough they use a type of prothesis to help cause the bone to meld. But if their is actual brain deformity along with the skull bone itself I can see why that might be a case for euthenasia. In such cases I'd wonder if the CSF could really move at all and wouldn't on it's own cause issue over depletion. As it is high icp(intercranial pressure) is bad and I'd have to guess unusually low ICP would also be bad. I had to watch the monitor for my daughters icp and stuff after both her surgeries when she was in icu and later in the neuro ward.

Usually though I thought such babies with open crainums are more common in macroencephaly and gah can't remember the word... that illness where children have no brain only functional brain stem that gives them minimal body function. Those children here(canada) as far as I know have their parents told of the condition and are encouraged to either abort(if caught soon) or donate organs to help another child live(if they were caught later or parents chose to go to term).

I have heard though of some insistant parents carrying such babies to term despite knowing very early in the pregnancy their condition. They didn't donate organs and sought full buriel but before that were insistent their baby would be fine and wanted life support. I guess such parents are in some sort of denial or figure docs have it wrong... or perhaps think that maybe their babies brain will start to grow while on support or that maybe though the brain is small there is something in there. Probably adding to things is the fact some of those infants are fully developed other than the brain. So they look normal so parents can't wrap their minds around what the docs say. *shrug*

[conuly]

The toilet training one? That post in Wakasplat's journal that ended up metaquoted.

[celticess.livejournal.com]

Ahh I've not paid attention. I don't read Amanda's journal in general. *shrug* Though I think a fair bit of her stuff used to be up on autistics.org(maybe still is).