56 replies to this topic

[Raina]

Rhea said:

about the only thing she CAN do is cry when she's in pain

I don't think that she can even do that much. Iirc, the article mentioned that they also had her appendix removed because she can't indicate when she's in pain and thus if it ever burst, they wouldn't know until it was too late.

I think that in this case, what they did makes sense: she has the mental capacity of (less than) a child, so she should have a body that goes along with that.

Having said that though, I can see this as being the start of a very slippery slope. Where do you draw the line between able-minded enough to have some hope of an adult life, and so disabled that there's no chance that it'll ever happen?

Honestly, I can't help but wonder if it'd be better to just take out the tubes and let nature do what it will. I mean, other animals are euthanized for much more minor problems, and it seems to me that some animals may even have more mental capacity than her. And it could even be argued that it would be humane: she does have a small amount of mental capacity, so she might be aware enough to know that for some reason she can't really communicate or interact with her world. I mean, babies can hold their mothers' hands, reach out and explore their surroundings etc. And she can't.

Edited by Raina, 06 January 2007 - 07:03 AM.

[sierraleone]

The slippery slope for me is where I'd figure this would go next... other children who will always be severly mentally disabled, but otherwise have full motor functions. But, either related to their condition or  not, they will physically lash out and are violent. Who knows if they know what they are doing or not. So the kid turns 10 and the caregivers realise they don't want to deal w/ a 150-300 pound 'kid' who will hit you with no thought.

(I know a 17 yr old handicap boy who is around 6 feet, 280 pounds... luckily his temper tantrums are not too often and he doesn't hit people, just throw his fists around, stomps his feet.... but then he is able to communicate too)

[Nonny]

Drax, on Jan 5 2007, 12:59 PM, said:

Quote

I think we would work to treat the conditions without stripping [disabled people]of what little humanity they still have.

As a physical challenged individual, I find this statement very offensive.  We are all as human as the so-called "normal" people.

As a physically and mentally disabled individual, I say Amen to that!  

Digital Man, on Jan 5 2007, 05:44 PM, said:

I'd have to know ALL the facts before I could make a judgement. I will question the wisdom of the parents posting a blog for all the world to see. Dangerously naive, at the very least. Given the volatile nature of this story, and the emotional responses this is bound to cause, posting a blog strikes me as a VERY bad idea.

I agree with you about the wisdom of blogging this.  I tend to err in the direction of disclosure myself, and have found that for every person who will honor a very simple request to avoid doing a very simple and already discourteous thing, there is one who will simply ignore it, one who will do it on purpose and get all snippy when I unavoidably react, and one who will use the information against me to cause as much harm as possible.  

Nonny

[Cheile]

wow Kosh you totally did not read what i said did you?

Kosh, on Jan 5 2007, 01:39 PM, said:

Have you ever helped care for someon who is handicapped?

that's entirely irrelevant.

there is a difference between someone who is disabled but functional (such as Down's Syndrome children) and this girl.  i will repeat what i said in my original post.

the child will not have a normal adult life.  hell she will not have ANY kind of adult life.

Quote

make her as comfortable as you can.

which they're trying to do.  ensuring that she will never have to suffer the agony of periods and hormones.

as for the wisdom of blogging it, i found out about this story in another community.  many people were condemning the parents, using the "convenience for themselves only!" excuse until they read the blog and opened their eyes and brains.

these parents are not delusional like Terri Schiavo's were and still are.  they accept what has happened to their child and are doing their best for her.

[Rhea]

The parents tried to anonymize the blog by leaving out names and blacking out the faces of all the family members except Ashley.

Given how many people have rushed to judge and condemn these parents, it's just as well they did the blog so that people will see that they love their child and were trying to do what's best for her.

And it does make a difference as to whether you've cared for anyone this seriously disabled. One of our classes is full of seriously disabled children like Ashley. It takes them half of the four-hour class time to toilet the class of ten (they get a lot of attention and therapy, most of which is completely useless, given the cognitive state of these children).

You can't even begin to imagine the amount of time it takes to physically care for a child like this. The tragedy is that other siblings usually don't get the care and attention they need because the parents' time is taken up caring for the disabled child. And it's quite a big deal just to move a child like this, never mind diaper changing, feeding through a g-tube (which is quite a process), etc. It tends to sap the life right out of the family.

Edited by Rhea, 06 January 2007 - 07:35 PM.

[Lin731]

Speaking as someone with a nephew who's severely retarded (mental age of about 3) and unable to walk or talk (CP), what seems monsterous to some of you, wasn't done for mere convience. My Nephew is 29 now but from the age of 16 on up it became more and more difficult to care for a 175 pounds of dead weight. By the age of 22 he ended up in a home. Why? Because my brother (who has serious back problems) could no longer lift him constantly. Lift him in and out of his wheelchair, in and out of bed, in and out of vehicles, in and out of the tub, to and from the dinner table. If you've never done it, you have no idea how physically demanding it is. It would be different with someone who could assist you but my nephew couldn't do that either. So this girl's family did what they felt they had to do to be able to continue to care for their child AT HOME. Would everyone be less squimish if the family hadn't done that and the daughter had ended up in the care of strangers?

[SparkyCola]

I'm generally on the side of Rhea, Cheile and Broph - but I am concerned about the potential slippery slope.

Also, there is the consideration that she is very young. Who knows what kind of techniques or treatments they might have in the future?

However I don't like this talk of it being merely for the parents' "convenience" - it's apparent to me that they are doing this because they love her and want what's best for her - if they wanted convenience they would put her in a home.

Sparky

Edited by SparkyCola, 06 January 2007 - 05:53 PM.

[MuseZack]

SparkyCola, on Jan 6 2007, 10:50 PM, said:

I'm generally on the side of Rhea, Cheile and Broph - but I am concerned about the potential slippery slope.

Also, there is the consideration that she is very young. Who knows what kind of techniques or treatments they might have in the future?

However I don't like this talk of it being merely for the parents' "convenience" - it's apparent to me that they are doing this because they love her and want what's best for her - if they wanted convenience they would put her in a home.

Sparky

In the unlikely event that medical science discovers a way to heal Ashley's brain, she'd be a 4 foot six inch woman with a flat chest-- unusual, perhaps, but not exactly unheard of.

[SparkyCola]

^ True enough Zack.

For now I think they've done the best they can do for Ashley. I agree that a cure or treatment is pretty unlikely.

Sparky

[Rhea]

MuseZack, on Jan 6 2007, 03:33 PM, said:

SparkyCola, on Jan 6 2007, 10:50 PM, said:

I'm generally on the side of Rhea, Cheile and Broph - but I am concerned about the potential slippery slope.

Also, there is the consideration that she is very young. Who knows what kind of techniques or treatments they might have in the future?

However I don't like this talk of it being merely for the parents' "convenience" - it's apparent to me that they are doing this because they love her and want what's best for her - if they wanted convenience they would put her in a home.

Sparky

In the unlikely event that medical science discovers a way to heal Ashley's brain, she'd be a 4 foot six inch woman with a flat chest-- unusual, perhaps, but not exactly unheard of.

Yeah. Plus, she'll never be healed - she's so profoundly disabled physically and so retarded that it's impossible that she would ever be cured.

[Nikcara]

you know...given that I've experianced some pretty nasty periods, I can't say I'm too horrified by the idea of making sure that a girl who should never have children in the first place doesn't get them.  I don't know how the menstral cycles in this family goes, but they can include severe bleeding, migraines, cramps (which sometimes are just uncomfortable, and sometimes are so bad the woman can't function because they are in too much pain), bloating, nausea, mood swings, and other symptoms.  Why put the girl through all that when she can't even tell her caretakers she's in pain?  The only reason (in my mind, at least) for putting up with all that is the possiblity of children later on (ok...also because I have no real choice...stupid biology) - and the only way this girl is going to have sex is if she's raped, and she certainly can't take care of a child anyway.

Other people have mentioned how difficult it is to move an adult who doesn't move on their own.  I've done this before and I always needed help - and I'm a healthy 20-something who excerises regularly.  A middle-aged couple who is only getting older simply wouldn't be able to care for her after a while.

No, these procedures are not pretty.  Then again, alot of medicine is darn ugly when you get a good look at it.  That doesn't mean it isn't useful.

[Vapor Trails]

Cheile, on Jan 6 2007, 05:03 PM, said:

as for the wisdom of blogging it, i found out about this story in another community.  many people were condemning the parents, using the "convenience for themselves only!" excuse until they read the blog and opened their eyes and brains.

(emphasis mine)

Do you assume everyone will "open their eyes and brains"?

Sorry-but when it comes to controversial things like this, I'm not all that trusting when it comes to how people react. Lots of people let their emotions get the better of them-and many folks see what they want to see.


So-my opinion remains unchanged.  It was a dangerously naive thing to do.

[Vapor Trails]

Rhea, on Jan 6 2007, 05:09 PM, said:

Given how many people have rushed to judge and condemn these parents, it's just as well they did the blog so that people will see that they love their child and were trying to do what's best for her.

I understand-but we'll have to agree to disagree on this one. I've already heard a number of people slamming these parents and their doctors. Like I said to Cheile-people see what they want to see.

Edited by Digital Man, 07 January 2007 - 03:34 AM.

[Nonny]

Cheile, on Jan 6 2007, 02:03 PM, said:

these parents are not delusional like Terri Schiavo's were and still are.  they accept what has happened to their child and are doing their best for her.

Excellent point.

[Hibblette]

Until you have walked a mile in someones moccasins...

My heart and prayers go out to this family.

[Cheile]

Digital Man, on Jan 7 2007, 12:21 AM, said:

Sorry-but when it comes to controversial things like this, I'm not all that trusting when it comes to how people react. Lots of people let their emotions get the better of them-and many folks see what they want to see.

if they read the MEDICAL FACTS and choose to remain delusional (again--Terri Schiavo's parents, anyone?) or condemn them, then that's their problem.

[Vapor Trails]

Cheile, on Jan 7 2007, 02:54 PM, said:

Digital Man, on Jan 7 2007, 12:21 AM, said:

Sorry-but when it comes to controversial things like this, I'm not all that trusting when it comes to how people react. Lots of people let their emotions get the better of them-and many folks see what they want to see.

if they read the MEDICAL FACTS and choose to remain delusional (again--Terri Schiavo's parents, anyone?) or condemn them, then that's their problem.

True-it's their problem-until they try to force their POV down the throats of the people they don't agree with: the parents. That's why I didn't think posting a blog was such a good idea. Many people seem to be under the illusion of privacy on the internet-and the fact is there are some pretty zealous people out there...people who might be clever enough to do traces. Perhaps this might have been better if it were in some magazine, as opposed to a parents' blog.

Yeah-I'm being paranoid, and for good reason. It's funny you bring up Terry Schiavo-look at those protestors who were hanging around the hospice. Imagine these nutjobs hanging around/harassing these parents.

Never underestimate the resourcefulness of zealots.