"I know it’s happened to someone else."
September 7, 2013 2:59 PM Subscribe
Kelli Stapleton kept a candid blog about the struggles of raising Issy, a teenager with autism who suffers frequent violent episodes. A newspaper profile from earlier this spring detailed the family's trouble accessing the professional help Issy requires. Kelli admitted in her most recent blog post on September 3rd: "I have to admit that I’m suffering from a severe case of battle fatigue." Later that day, [Kelli's husband] received a message from Kelli that police described as "despondent". Kelli Stapleton is now under arrest on charges of attempted murder and Issy remains hospitalized after what appears to be a failed murder/suicide. Bloggers from the national autism community have responded.
My heart doesn't go out to Kelli because it is wrong to murder your autistic child.
posted by w0mbat at 3:14 PM on September 7, 2013 [28 favorites]
posted by w0mbat at 3:14 PM on September 7, 2013 [28 favorites]
That's a great piece, w0mbat; thanks for sharing.
posted by ThePinkSuperhero at 3:17 PM on September 7, 2013 [2 favorites]
posted by ThePinkSuperhero at 3:17 PM on September 7, 2013 [2 favorites]
Someone posted on Facebook about six hours ago that Issy has had her breathing and feeding tubes removed and is talking. She reportedly asked for a glass of water, and recognized her dad.
So there's that, at least.
I hope everyone involved gets help they need. And I hope w0mbat is never, ever in the situation Kelli Stapleton is in, because I rather suspect Ms. Stapleton doesn't think it's right to murder an autistic person, either, and she never envisioned life would fail her to the point where murder of her child and suicide seemed like the only way out.
Thanks, PinkSuperhero, for the post.
posted by magstheaxe at 3:23 PM on September 7, 2013 [127 favorites]
So there's that, at least.
I hope everyone involved gets help they need. And I hope w0mbat is never, ever in the situation Kelli Stapleton is in, because I rather suspect Ms. Stapleton doesn't think it's right to murder an autistic person, either, and she never envisioned life would fail her to the point where murder of her child and suicide seemed like the only way out.
Thanks, PinkSuperhero, for the post.
posted by magstheaxe at 3:23 PM on September 7, 2013 [127 favorites]
This is a heartbreaking story.
posted by HuronBob at 3:25 PM on September 7, 2013 [1 favorite]
posted by HuronBob at 3:25 PM on September 7, 2013 [1 favorite]
My heart doesn't go out to Kelli because it is wrong to murder your autistic child.
Rather than thinking of this act as a measure of Kelli's character, you might think of it as a measure of her distress and the extent to which that distress overrode her character.
posted by yoink at 3:26 PM on September 7, 2013 [108 favorites]
Rather than thinking of this act as a measure of Kelli's character, you might think of it as a measure of her distress and the extent to which that distress overrode her character.
posted by yoink at 3:26 PM on September 7, 2013 [108 favorites]
Rather than thinking of this act as a measure of Kelli's character, you might think of it as a measure of her distress and the extent to which that distress overrode her character.
In other words, you might blame the victim.
posted by Unified Theory at 3:30 PM on September 7, 2013 [14 favorites]
In other words, you might blame the victim.
posted by Unified Theory at 3:30 PM on September 7, 2013 [14 favorites]
In other words, you might blame the victim.
Or the circumstances. There appear to be several victims here.
posted by klanawa at 3:32 PM on September 7, 2013 [80 favorites]
Or the circumstances. There appear to be several victims here.
posted by klanawa at 3:32 PM on September 7, 2013 [80 favorites]
In other words, you might blame the victim.
Uhm, no. Try society for "the family's trouble accessing the professional help Issy requires."
posted by OnTheLastCastle at 3:32 PM on September 7, 2013 [61 favorites]
Uhm, no. Try society for "the family's trouble accessing the professional help Issy requires."
posted by OnTheLastCastle at 3:32 PM on September 7, 2013 [61 favorites]
I can't say that I agree at all with the mother's actions. But, make no mistake, there is nothing good about having or being responsible for someone with a severe disability. Absolutely nothing. It can drive even the most stable caretaker to deep depression or, more mercifully, proclaiming their disabled dependent a "blessing" or an "angel" and plunging themselves into delusion.
posted by Halogenhat at 3:38 PM on September 7, 2013 [17 favorites]
posted by Halogenhat at 3:38 PM on September 7, 2013 [17 favorites]
There's only one victim here and it's a child. Not blaming the mother for trying to murder her child is insulting to the millions of parents of autistic children who do their damnedest to keep their families healthy and happy. Talk about the systemic issues if you want, those may be at fault too, but it's still just really wrong-footed to express more sympathy for the abuser than the abused.
posted by Potomac Avenue at 3:38 PM on September 7, 2013 [15 favorites]
posted by Potomac Avenue at 3:38 PM on September 7, 2013 [15 favorites]
I don't even know what to say. It is wrong to do what she did, and the piece by Judy Endow that w0mbat linked is absolutely right in that we don't center the child in this story, but the caregiver.
But the fact that she tried to kill herself as well as her child means it's not just murder, but suicide. She had given up and had rightly or wrongly perceived that there was no future for her child, no help to come, or not enough to matter. Would her child really have been ok if she had just called 911, as Ms. Endow maintains? What if the daughter had been put in foster care and been abused, as does happen? What if she'd simply ended up back with her family but now with her mother in jail? (which may now happen of course, if she survives).
We still treat disability as a situation that is still ultimately only the family's responsibility to live with, and we are going to continue to see people snap and do horrible things under the strain. I'm fairly sure it happens more than we know already.
I guess the part where I feel helpless is that disabled advocates are right, there absolutely an undercurrent of sympathy when a caretaking parent snaps and murders a disabled child for reasons that many sympathize with (no resources, fear of what will happen when parents are gone, perception of unbearable pain or suffering), and that's a highly dangerous thing to encourage, because of course some parents do so because they are abusive or unloving, and we don't need to give those parents cover.
But we make life for disabled people and for their families so hard in this stupid country, so full of frustrations and humiliations and fear way beyond what the disability itself brings.
It's a nightmare for everyone.
posted by emjaybee at 3:39 PM on September 7, 2013 [48 favorites]
But the fact that she tried to kill herself as well as her child means it's not just murder, but suicide. She had given up and had rightly or wrongly perceived that there was no future for her child, no help to come, or not enough to matter. Would her child really have been ok if she had just called 911, as Ms. Endow maintains? What if the daughter had been put in foster care and been abused, as does happen? What if she'd simply ended up back with her family but now with her mother in jail? (which may now happen of course, if she survives).
We still treat disability as a situation that is still ultimately only the family's responsibility to live with, and we are going to continue to see people snap and do horrible things under the strain. I'm fairly sure it happens more than we know already.
I guess the part where I feel helpless is that disabled advocates are right, there absolutely an undercurrent of sympathy when a caretaking parent snaps and murders a disabled child for reasons that many sympathize with (no resources, fear of what will happen when parents are gone, perception of unbearable pain or suffering), and that's a highly dangerous thing to encourage, because of course some parents do so because they are abusive or unloving, and we don't need to give those parents cover.
But we make life for disabled people and for their families so hard in this stupid country, so full of frustrations and humiliations and fear way beyond what the disability itself brings.
It's a nightmare for everyone.
posted by emjaybee at 3:39 PM on September 7, 2013 [48 favorites]
and that's a highly dangerous thing to encourage
Acknowledgement and encouragement are two completely different things. Conflating the two gives people exactly the excuse they need to see that nothing changes.
posted by klanawa at 3:43 PM on September 7, 2013 [13 favorites]
Acknowledgement and encouragement are two completely different things. Conflating the two gives people exactly the excuse they need to see that nothing changes.
posted by klanawa at 3:43 PM on September 7, 2013 [13 favorites]
Until you've worked with the severely autistic and developmentally disabled, you can't truly understand the strain and pressure their families must endure. At the summer camp where I worked with this population, we actually called them "Respite Weeks"--the respite being for the caregivers, of course. I've never seen a transformation so grand and awesome as a bone-weary Mom dropping off her 25-year-old severely autistic and nonverbal "child" for a week's stay at the camp; as if the weight of the world is lifted if only for a brief time. I used to think that the caregivers would go on vacation or a trip or shopping; something fun. Now I know they likely simply went home and slept the sleep of the dead.
Issy doesn't deserve to be murdered. Of course not. But it would be incredibly unjust to not consider the immense stress and strain her mother must've been under. As someone said upthread, there appear to be several victims here. We can judge our society by how it treats its poorest and weakest members. The Stapleton family has learned precisely the hard truth of our current society's judgment of their daughter's value, and it breaks my heart.
posted by mrbarrett.com at 3:46 PM on September 7, 2013 [95 favorites]
Issy doesn't deserve to be murdered. Of course not. But it would be incredibly unjust to not consider the immense stress and strain her mother must've been under. As someone said upthread, there appear to be several victims here. We can judge our society by how it treats its poorest and weakest members. The Stapleton family has learned precisely the hard truth of our current society's judgment of their daughter's value, and it breaks my heart.
posted by mrbarrett.com at 3:46 PM on September 7, 2013 [95 favorites]
I feel that we can say "something about the system failed these people" while at the same time being very clear that this person did an evil evil thing. My heart didn't go out to the kid that shot up Sandy Hook, but I still agreed that guns should be harder to get than mental health care.
posted by Potomac Avenue at 3:49 PM on September 7, 2013 [6 favorites]
posted by Potomac Avenue at 3:49 PM on September 7, 2013 [6 favorites]
What a horrifying situation. There are several victims here, and while there is obviously no excuse for attempted murder, I see this as yet another example of a failed society. And obviously, it was a cry for help.
A community which lays the whole burden of mentally challenged children on their parents is in my view heartless, wether that community is a village, a city or a state. The idea that Kelli should dedicate herself to homeschooling Issy, whom she quite obviously could not handle, is barbaric in its fake sentimentalism and disregard for human suffering.
posted by mumimor at 3:52 PM on September 7, 2013 [13 favorites]
A community which lays the whole burden of mentally challenged children on their parents is in my view heartless, wether that community is a village, a city or a state. The idea that Kelli should dedicate herself to homeschooling Issy, whom she quite obviously could not handle, is barbaric in its fake sentimentalism and disregard for human suffering.
posted by mumimor at 3:52 PM on September 7, 2013 [13 favorites]
In other words, you might blame the victim
Victims abound in cases like this. Caregivers of deeply disturbed children are victims of, first, appalling luck and, second, of inadequate societal support. Any reasonably compassionate response to a terrible tragedy like this should start from a recognition that none of us knows, until we are tried, if we would not succumb ourselves to such an appalling burden. I can easily see that in a state of suicidal despair, when one is, by definition, incapable of thinking rationally, one might think that the only way to spare one's child a life of institutionalized misery when one had determined that one was incapable of continuing to live was to take that child's life as well as one's own. To say that one can have compassion and understanding for someone driven to do an appalling act by mental and physical hardships to which they were not equal is not to approve of the act, it is to recognize that we are none of us immune to suffering and that all of us could be driven to perform acts we consider gravely wrong under certain circumstances.
posted by yoink at 3:55 PM on September 7, 2013 [48 favorites]
Victims abound in cases like this. Caregivers of deeply disturbed children are victims of, first, appalling luck and, second, of inadequate societal support. Any reasonably compassionate response to a terrible tragedy like this should start from a recognition that none of us knows, until we are tried, if we would not succumb ourselves to such an appalling burden. I can easily see that in a state of suicidal despair, when one is, by definition, incapable of thinking rationally, one might think that the only way to spare one's child a life of institutionalized misery when one had determined that one was incapable of continuing to live was to take that child's life as well as one's own. To say that one can have compassion and understanding for someone driven to do an appalling act by mental and physical hardships to which they were not equal is not to approve of the act, it is to recognize that we are none of us immune to suffering and that all of us could be driven to perform acts we consider gravely wrong under certain circumstances.
posted by yoink at 3:55 PM on September 7, 2013 [48 favorites]
while at the same time being very clear that this person did an evil evil thing
I can't see that anyone in this thread has suggested otherwise.
posted by yoink at 3:57 PM on September 7, 2013 [4 favorites]
I can't see that anyone in this thread has suggested otherwise.
posted by yoink at 3:57 PM on September 7, 2013 [4 favorites]
Jesus. It puts me in mind of this story from 2011: Foigelman and her [mentally disabled adult] son were at the Boulevard Family Restaurant in Amherst when he started choking, and she shouted "Let him die" and tried to prevent others from helping him.
This kind of thing makes me terrified of even having children, when there is the possibility of falling into such an abyss. There's no good answers here. I can only offer
.
for the hopes of the Stapleton family, which, however you may see it, has lost a mother.
posted by Countess Elena at 3:58 PM on September 7, 2013 [4 favorites]
This kind of thing makes me terrified of even having children, when there is the possibility of falling into such an abyss. There's no good answers here. I can only offer
.
for the hopes of the Stapleton family, which, however you may see it, has lost a mother.
posted by Countess Elena at 3:58 PM on September 7, 2013 [4 favorites]
it seems to me like it would be a shame if this thread was just 100 comments of people whipping out sympathy/monster measuring sticks and marking exactly where they find each participant and exactly what marks they'll tolerate in others.
posted by nadawi at 4:00 PM on September 7, 2013 [48 favorites]
posted by nadawi at 4:00 PM on September 7, 2013 [48 favorites]
I can't even begin to imagine what this is like for her two other children.
posted by prefpara at 4:02 PM on September 7, 2013 [14 favorites]
posted by prefpara at 4:02 PM on September 7, 2013 [14 favorites]
What social support is available for someone with such aggression like this? It's mentioned that she'd attacked workers before, and her little sister and obviously her mother, so would putting her in a foster care facility really be a good idea?
posted by gucci mane at 4:02 PM on September 7, 2013 [3 favorites]
posted by gucci mane at 4:02 PM on September 7, 2013 [3 favorites]
In other words, you might blame the victim
The mother's suicide attempt strongly suggests he she was not in good mental health at the time of the attempted murder, though I'm not competent to evaluate that possibility. Her action was unquestionably evil, but she may not be morally or legally responsible for performing it.
posted by justsomebodythatyouusedtoknow at 4:02 PM on September 7, 2013 [2 favorites]
The mother's suicide attempt strongly suggests he she was not in good mental health at the time of the attempted murder, though I'm not competent to evaluate that possibility. Her action was unquestionably evil, but she may not be morally or legally responsible for performing it.
posted by justsomebodythatyouusedtoknow at 4:02 PM on September 7, 2013 [2 favorites]
Are we forgetting that Issy, as a result of her disability, was violent enough to put her mother in the hospital more than once? That is another layer over the depression, the exhaustion, the unending work. That the fear for Issy was also a fear of Issy? For herself, her family, other carers, everyone.
posted by geek anachronism at 4:05 PM on September 7, 2013 [45 favorites]
posted by geek anachronism at 4:05 PM on September 7, 2013 [45 favorites]
I have no parallel for this from my own life except this: people who have no kids but make grand pronouncements about what they would or would not do in a given situation when raising a child. Those people rarely have any idea what they're talking about, and I don't have the language to communicate to them how embarrassed they should be about the nonsense tumbling from their mouths.
I don't have a deeply disabled child, so pretending I understand what it's like to be ground down every single day and to know for certain that the grinding will continue until the day I die? And that despite my entire life's worth of crushing effort that this child will not and cannot ever live independently? I can't. I won't. I once helped babysit a non-verbal autistic child who had violent outbursts, and after 2 hours I was at my wit's end. I can't even imagine doing it every day, forever.
posted by 1adam12 at 4:11 PM on September 7, 2013 [58 favorites]
I don't have a deeply disabled child, so pretending I understand what it's like to be ground down every single day and to know for certain that the grinding will continue until the day I die? And that despite my entire life's worth of crushing effort that this child will not and cannot ever live independently? I can't. I won't. I once helped babysit a non-verbal autistic child who had violent outbursts, and after 2 hours I was at my wit's end. I can't even imagine doing it every day, forever.
posted by 1adam12 at 4:11 PM on September 7, 2013 [58 favorites]
Talk about the systemic issues if you want, those may be at fault too, but it's still just really wrong-footed to express more sympathy for the abuser than the abused.
The assertion that Kelli is somehow unfairly receiving more sympathy than her daughter isn't one that pans out all that well, and a non issue regardless.
I'm not even going to blame society here. Because this is exactly the kind of thing that destroys families and lives all the time under less extreme circumstances. There are sometimes situations that arise where there is no satisfactory resolution to be found.
I know a family where the eldest child was born with a severe mental and physical disability that became an overwhelming burden on the family as the child grew up. It was a situation where there was no treatment to be found, only damage control. Sometimes that felt brutal and unfair. There were no saints to be found even with the help of the state. This took its toll on the rest of the family in different ways, resulting in a dynamic that, while never homicidal, is about as poisonous as can be. I'd like to think I would be able to hold myself together under such circumstances, but frankly I don't think I'm unique in any such regard, and would probably end up just as broken as anyone else in that situation.
I hope in the long run this allows at the very least for Kelli to know that Issy has a chance to live safely, with better resources she was able to procure for her daughter.
posted by 2N2222 at 4:14 PM on September 7, 2013 [5 favorites]
The assertion that Kelli is somehow unfairly receiving more sympathy than her daughter isn't one that pans out all that well, and a non issue regardless.
I'm not even going to blame society here. Because this is exactly the kind of thing that destroys families and lives all the time under less extreme circumstances. There are sometimes situations that arise where there is no satisfactory resolution to be found.
I know a family where the eldest child was born with a severe mental and physical disability that became an overwhelming burden on the family as the child grew up. It was a situation where there was no treatment to be found, only damage control. Sometimes that felt brutal and unfair. There were no saints to be found even with the help of the state. This took its toll on the rest of the family in different ways, resulting in a dynamic that, while never homicidal, is about as poisonous as can be. I'd like to think I would be able to hold myself together under such circumstances, but frankly I don't think I'm unique in any such regard, and would probably end up just as broken as anyone else in that situation.
I hope in the long run this allows at the very least for Kelli to know that Issy has a chance to live safely, with better resources she was able to procure for her daughter.
posted by 2N2222 at 4:14 PM on September 7, 2013 [5 favorites]
Are there any other murder victims routinely asked to have compassion for their murderers? Why are autistic people expected to?
Oh, it must be so difficult dealing with an autistic child? Any consideration for how difficult it might be to BE an autistic child, in a culture that labels you an impossible burden, and condones your abuse and murder?
There is evidence that Issy's "violent outbursts" were reactions to physical abuse (beatings, isolation and restraint are abuse, even when they are called "therapy".)
People who are oozing with sympathy for someone who attempted to murder a child - do you have any idea at all what your words sound like to the autistic people who read them? "It's OK to murder people like you - we all understand - murdering an autistic child doesn't matter like murdering a neurotypical child would. We'd care about THAT."
Michael Montje says it better than I can:
http://www.mmonjejr.com/2013/09/bodies-and-behaviors.html
posted by dbltall at 4:15 PM on September 7, 2013 [21 favorites]
Oh, it must be so difficult dealing with an autistic child? Any consideration for how difficult it might be to BE an autistic child, in a culture that labels you an impossible burden, and condones your abuse and murder?
There is evidence that Issy's "violent outbursts" were reactions to physical abuse (beatings, isolation and restraint are abuse, even when they are called "therapy".)
People who are oozing with sympathy for someone who attempted to murder a child - do you have any idea at all what your words sound like to the autistic people who read them? "It's OK to murder people like you - we all understand - murdering an autistic child doesn't matter like murdering a neurotypical child would. We'd care about THAT."
Michael Montje says it better than I can:
http://www.mmonjejr.com/2013/09/bodies-and-behaviors.html
posted by dbltall at 4:15 PM on September 7, 2013 [21 favorites]
After taking a look at the blog and the "Team Issy" Facebook page, it looks like Kelli and a special education teacher had an argument on August 28th over incorporating Issy's behavior plan into a special education classroom at the school where Mr. Stapleton is a principal. The special education teacher "pulled the plug" on the Stapleton's plans to bring Issy to Mr. Stapleton's school, and it seems like Kelli blamed herself for this, stating that she had "ruined everything". I think this might have been the straw that broke the camel's back for Kelli.
posted by SkylitDrawl at 4:15 PM on September 7, 2013 [4 favorites]
posted by SkylitDrawl at 4:15 PM on September 7, 2013 [4 favorites]
Not blaming the mother for trying to murder her child is insulting to the millions of parents of autistic children who do their damnedest to keep their families healthy and happy.
you don't speak for them, thank you
my brother has a serious relationship with a woman who has a severely autistic child who is so far incapable of talking and both of them have expressed anger at those who would judge this woman after what she's gone through, even though they don't approve
i have a high functioning autistic daughter and after the struggles i've had helping her along to be somewhat interactive with people - 12 years ago, she really wasn't - i'm not sure i want to judge this woman either
worse yet, this happened where we both live
i'm probably not going to read the links; i've already read about it in the local paper - and it just plain makes me too sad
not insulted - just sad
posted by pyramid termite at 4:17 PM on September 7, 2013 [28 favorites]
you don't speak for them, thank you
my brother has a serious relationship with a woman who has a severely autistic child who is so far incapable of talking and both of them have expressed anger at those who would judge this woman after what she's gone through, even though they don't approve
i have a high functioning autistic daughter and after the struggles i've had helping her along to be somewhat interactive with people - 12 years ago, she really wasn't - i'm not sure i want to judge this woman either
worse yet, this happened where we both live
i'm probably not going to read the links; i've already read about it in the local paper - and it just plain makes me too sad
not insulted - just sad
posted by pyramid termite at 4:17 PM on September 7, 2013 [28 favorites]
Anyone who thinks Issy could safely be held at a foster home should read Kelli's blog post of June 11 and watch the video. After a few seconds of quietly coloring, Issy randomly and violently totally takes down three adults simultaneously- her mom, an experienced social worker, and a trained aide (who appears to be about 6 foot tall, 200 lbs). She does this and we're told this is BETTER and LESS VIOLENT than she was before she and her family were trained in behavior management. If Issy was surrendered to foster care with people had not been trained in these ways, she'd be tied up and drugged to stupor.
There is no good answer here, only heartbreak for everyone involved.
posted by holyrood at 4:17 PM on September 7, 2013 [62 favorites]
There is no good answer here, only heartbreak for everyone involved.
posted by holyrood at 4:17 PM on September 7, 2013 [62 favorites]
We still treat disability as a situation that is still ultimately only the family's responsibility to live with, and we are going to continue to see people snap and do horrible things under the strain. I'm fairly sure it happens more than we know already.
Alex Spourdalakis, earlier this summer.
George Hodgins, about a year and a half ago.
Those are the autistic cases I know about. The old Disabled Feminists blog used to keep a record of the names of people with disabilities whose murders or mysterious deaths had made the news. They originally thought they would only post something a few times a year. Instead, they wound up posting multiple times a month, with a shocking number of disabled people killed by family members (as many as ten in one month). They also found several instance of police officers shooting disabled men whose families called them because their family member was having a breakdown and they didn't know who else to call.
IMHO, it's reached epidemic proportions. I understand why disabled people and their allies are so angry the media coverage--the real story isn't that it happens, it's how often it happens.
posted by magstheaxe at 4:21 PM on September 7, 2013 [27 favorites]
Alex Spourdalakis, earlier this summer.
George Hodgins, about a year and a half ago.
Those are the autistic cases I know about. The old Disabled Feminists blog used to keep a record of the names of people with disabilities whose murders or mysterious deaths had made the news. They originally thought they would only post something a few times a year. Instead, they wound up posting multiple times a month, with a shocking number of disabled people killed by family members (as many as ten in one month). They also found several instance of police officers shooting disabled men whose families called them because their family member was having a breakdown and they didn't know who else to call.
IMHO, it's reached epidemic proportions. I understand why disabled people and their allies are so angry the media coverage--the real story isn't that it happens, it's how often it happens.
posted by magstheaxe at 4:21 PM on September 7, 2013 [27 favorites]
What happens now? I'm guessing Issy is not going to be living with her family for the foreseeable future. It also seems unlikely that the state is going to decide to not prosecute the mother.
So Issy gets put into foster care? And then after she has more violent outbursts (that's an assumption but seems reasonable)? Institutionalization? What hope is there for her then? The only people who are/were willing to give their lives to help her will no longer be in position to do so. Will the state love her and give her as much of a chance as her family would have given her if they had been given the help they needed?
The mom will be spending time in jail and if this goes to trial, possibly for a very long time. If a deal is offered it will probably end up keeping the mother out of Issy's life for the short term and maybe for a very long time (restraining order type of thing).
The father cannot do it all by himself. Issy will have to be institutionalized. Right? Will there ever be an out for her?
And now the family is ruined also? The father and the other children?
Regardless of whom people are going to blame for this suicide/murder the only thing that should matter is trying to help these people going forward. We as a society need to look at this not as an opportunity to cry "evil" and point blame and punish someone but as a responsibility to help all of them and prevent something like this ever happening again.
If the mom needs to put away for a while (and given the help she clearly needs now (there's going to be a lot of guilt added on top of everything else she was going through)), so be it, but only for the sake of helping her get better so she can be in a position to help her daughter again (i.e., not thrown in jail as criminal which will not help her in the least and does not help Issy or the family at all).
But then the state will need to pony up and provide the at-home care that Issy needs so that the father can continue to work and take care of the rest of the family.
I personally don't give a fuck about who is wrong, who is evil, people's need for revenge by proxy (criminal justice), or any of the shit that has happened so far. The only thing that matters is how to make things as good or at least as livable as possible for these people going forward.
And I get that there a lot of people in similar situations who are not getting the help they need. I also get that it doesn't matter what I think should happen as the people who have the power do whatever it is they do. I know how things should be (in the general sense of everyone getting the help they need so that all of our lives aren't as shitty as they are) but in no way do I know how to get there or make these things happen. I'm just another shitty armchair pundit living in my utopian vision of how maybe life doesn't have to be this hard for these poor people.
posted by bfootdav at 4:26 PM on September 7, 2013 [28 favorites]
So Issy gets put into foster care? And then after she has more violent outbursts (that's an assumption but seems reasonable)? Institutionalization? What hope is there for her then? The only people who are/were willing to give their lives to help her will no longer be in position to do so. Will the state love her and give her as much of a chance as her family would have given her if they had been given the help they needed?
The mom will be spending time in jail and if this goes to trial, possibly for a very long time. If a deal is offered it will probably end up keeping the mother out of Issy's life for the short term and maybe for a very long time (restraining order type of thing).
The father cannot do it all by himself. Issy will have to be institutionalized. Right? Will there ever be an out for her?
And now the family is ruined also? The father and the other children?
Regardless of whom people are going to blame for this suicide/murder the only thing that should matter is trying to help these people going forward. We as a society need to look at this not as an opportunity to cry "evil" and point blame and punish someone but as a responsibility to help all of them and prevent something like this ever happening again.
If the mom needs to put away for a while (and given the help she clearly needs now (there's going to be a lot of guilt added on top of everything else she was going through)), so be it, but only for the sake of helping her get better so she can be in a position to help her daughter again (i.e., not thrown in jail as criminal which will not help her in the least and does not help Issy or the family at all).
But then the state will need to pony up and provide the at-home care that Issy needs so that the father can continue to work and take care of the rest of the family.
I personally don't give a fuck about who is wrong, who is evil, people's need for revenge by proxy (criminal justice), or any of the shit that has happened so far. The only thing that matters is how to make things as good or at least as livable as possible for these people going forward.
And I get that there a lot of people in similar situations who are not getting the help they need. I also get that it doesn't matter what I think should happen as the people who have the power do whatever it is they do. I know how things should be (in the general sense of everyone getting the help they need so that all of our lives aren't as shitty as they are) but in no way do I know how to get there or make these things happen. I'm just another shitty armchair pundit living in my utopian vision of how maybe life doesn't have to be this hard for these poor people.
posted by bfootdav at 4:26 PM on September 7, 2013 [28 favorites]
Killing a child is wrong. Killing your own child is wrong. Killing your own autistic child is wrong. And, yet, I sympathize with the mother.
I do not think that makes me a demon. Nor do I think that I am blaming the victim.
I cannot imagine the strength that it takes to raise a severely disabled child. I can, however, very much understand depression and have come so close to feeling as if all hope is lost. Years of struggling with the system to finally feel some potential relief... to have it taken away from you suddenly and without warning. I can understand how she lost her strength that day and how she wound up in that van. And my heart breaks for her.
This does not make what she did ok. Killing a child is wrong.
Sympathizing with the mother does not make us monsters. It makes us empathetic humans. It might not even be all that bad. If we, as a society, can empathize with parents of disabled children enough, we might actually start seeing more aid directed their way. Aid that they need. Aid that can stop this sort of thing from happening.
Because killing a child is wrong.
posted by imbri at 4:32 PM on September 7, 2013 [27 favorites]
I do not think that makes me a demon. Nor do I think that I am blaming the victim.
I cannot imagine the strength that it takes to raise a severely disabled child. I can, however, very much understand depression and have come so close to feeling as if all hope is lost. Years of struggling with the system to finally feel some potential relief... to have it taken away from you suddenly and without warning. I can understand how she lost her strength that day and how she wound up in that van. And my heart breaks for her.
This does not make what she did ok. Killing a child is wrong.
Sympathizing with the mother does not make us monsters. It makes us empathetic humans. It might not even be all that bad. If we, as a society, can empathize with parents of disabled children enough, we might actually start seeing more aid directed their way. Aid that they need. Aid that can stop this sort of thing from happening.
Because killing a child is wrong.
posted by imbri at 4:32 PM on September 7, 2013 [27 favorites]
Senile Dementia patients can also be violent. If you live long enough, you might be the one attacking your family.
Hey, you might suffer a stroke tomorrow that alters your brain. Anti-malaria tablets might give you paranoid schizophrenia. Lots of stuff can happen to you that means that, suddenly, you become a violent figure in your home, lashing out at the people around you.
Anybody quick to make a knee-jerk judgement on this should consider that their current state - as somebody who can make snap decisions over stuff like this - is an accident of fate.
posted by The River Ivel at 4:37 PM on September 7, 2013 [24 favorites]
Hey, you might suffer a stroke tomorrow that alters your brain. Anti-malaria tablets might give you paranoid schizophrenia. Lots of stuff can happen to you that means that, suddenly, you become a violent figure in your home, lashing out at the people around you.
Anybody quick to make a knee-jerk judgement on this should consider that their current state - as somebody who can make snap decisions over stuff like this - is an accident of fate.
posted by The River Ivel at 4:37 PM on September 7, 2013 [24 favorites]
My brother in law is severely autistic. He's a three-year-old in the body of a six-foot-three, 200-pound man. When he was living at home with his mother, my wife's family were afraid for her life. Her own son could, and did, drag her through the house by her hair and throw her against a wall.
Thank God, she never tried to hurt him - instead, she used his Social Security benefits to find a group home that could actually take care of him when it became clear that she couldn't. But that is a situation that will fuck with your head something fierce. Being afraid for your life around your own kid? Knowing that he could injure or kill somebody just because he's having a tantrum? Some people can deal with that, and I'm hugely impressed by them. The rest? If you don't have a support network that can help, the responsibility, the fear - it can break a person. Again, thank God for disability benefits, because without them I don't know what my MIL would have done; nobody in the family has the resources to pay for the care he's getting on our own.
I wish it would go without saying, but the idea that Sky appears to have been under so much stress that she suffered a psychotic break isn't the same thing as saying she was justified. Not even close. What she did was, quite literally, insane. But it's utterly facile to pretend she was acting out of malice, and that the only problem here is that she's an evil person and/or the world's worst parent, as if every single one of us would do better in her shoes.
posted by Holy Zarquon's Singing Fish at 4:40 PM on September 7, 2013 [48 favorites]
Thank God, she never tried to hurt him - instead, she used his Social Security benefits to find a group home that could actually take care of him when it became clear that she couldn't. But that is a situation that will fuck with your head something fierce. Being afraid for your life around your own kid? Knowing that he could injure or kill somebody just because he's having a tantrum? Some people can deal with that, and I'm hugely impressed by them. The rest? If you don't have a support network that can help, the responsibility, the fear - it can break a person. Again, thank God for disability benefits, because without them I don't know what my MIL would have done; nobody in the family has the resources to pay for the care he's getting on our own.
I wish it would go without saying, but the idea that Sky appears to have been under so much stress that she suffered a psychotic break isn't the same thing as saying she was justified. Not even close. What she did was, quite literally, insane. But it's utterly facile to pretend she was acting out of malice, and that the only problem here is that she's an evil person and/or the world's worst parent, as if every single one of us would do better in her shoes.
posted by Holy Zarquon's Singing Fish at 4:40 PM on September 7, 2013 [48 favorites]
I know it's hard for able-bodied and generally neurotypical people like me to understand Judy Endow's essay. Of course we empathize more with the mother than with the autistic child.
What was illustrative for me was to compare the typical responses in situations like Kelli Stapleton's to the typical responses in situations like Andrea Yates. There is not a lot of sympathy out there for mothers who kill their (able-bodied, healthy, neurotypical) children. Nor do I see a lot of expressions of sympathy for fathers who commit familicide or for teens who are suicidally, violently depressed, like Dylan Klebold.
This isn't about personal feelings of empathy or sympathy (personally, I feel empathy for Stapleton, Yates, AND Klebold). It's about how media narratives both reveal and shape how we feel about disabled, "difficult" children.
posted by muddgirl at 4:41 PM on September 7, 2013 [27 favorites]
What was illustrative for me was to compare the typical responses in situations like Kelli Stapleton's to the typical responses in situations like Andrea Yates. There is not a lot of sympathy out there for mothers who kill their (able-bodied, healthy, neurotypical) children. Nor do I see a lot of expressions of sympathy for fathers who commit familicide or for teens who are suicidally, violently depressed, like Dylan Klebold.
This isn't about personal feelings of empathy or sympathy (personally, I feel empathy for Stapleton, Yates, AND Klebold). It's about how media narratives both reveal and shape how we feel about disabled, "difficult" children.
posted by muddgirl at 4:41 PM on September 7, 2013 [27 favorites]
I've been part of a special education team that cared for severely disabled children. I've seen girls like Issy: moments of peace, watching for signs of a changing mood, interspersed with unpredictable outbursts of mindless violence. Even a girl of 10-11 can cause some serious damage when driven by a consuming violent impulse. This isn't measured, purposeful violence we're familiar with socially, it's total, bloodthirsty violence. And this is before you consider self-directed violence, things like children smashing their faces on desks, only to smile a moment later and fingerpaint with the blood that's coming out.
The facility where I worked was world-class. In some cases, medication offers a measure of normal function. The treatment for the remaining cases is physical restraint by burly dudes, hand-to-hand takedowns, padded rooms, and sedation. That is the treatment. We have no other, and there may not be any for a very long time.
posted by Nomyte at 4:46 PM on September 7, 2013 [32 favorites]
The facility where I worked was world-class. In some cases, medication offers a measure of normal function. The treatment for the remaining cases is physical restraint by burly dudes, hand-to-hand takedowns, padded rooms, and sedation. That is the treatment. We have no other, and there may not be any for a very long time.
posted by Nomyte at 4:46 PM on September 7, 2013 [32 favorites]
It is clear from Kelli's last blog entry that she was having some mental health issues. It would have been best if she had asked for help, but depression and anxiety fight you and want to keep you sick and underwater. I feel so awful for everyone involved.
posted by SkylitDrawl at 4:46 PM on September 7, 2013 [7 favorites]
posted by SkylitDrawl at 4:46 PM on September 7, 2013 [7 favorites]
Reading back through her blog posts, she very clearly loves Issy.
Her post in the second link though (from May), is heartbreaking. Upon hearing the news that her daughter had been denied for treatment yet again:
I fell apart.
I crossed the line.
It’s the last straw.
Desperate times call for desperate measures.
I’m tired of her autism robbing her of a life. I’m tired of it taking all of our resources (time, money, energy, everything). I’m tired of dying slowly with each traumatic brain injury. But mainly, I’m so DAMN MAD at watching my husband, a good man, work hard and never get ahead. He can’t keep his family safe, and he can’t fix his broken daughter. He deserves to come home and hug his family, pay the bills, kick the dog (that’s a joke) and do what good men do.
Our other children deserve all the time they haven’t been able to get from their parents. All of the attention they deserve. All the help with their homework they can use. They are AMAZING. They deserve to have a childhood.
That poor woman who called. She had no idea when she called me to give me the “not so good” news that I was dancing so close to the edge.
What do you do when you’ve done all you can do? When every decision is out of your hands?
posted by triggerfinger at 4:46 PM on September 7, 2013 [8 favorites]
Her post in the second link though (from May), is heartbreaking. Upon hearing the news that her daughter had been denied for treatment yet again:
I fell apart.
I crossed the line.
It’s the last straw.
Desperate times call for desperate measures.
I’m tired of her autism robbing her of a life. I’m tired of it taking all of our resources (time, money, energy, everything). I’m tired of dying slowly with each traumatic brain injury. But mainly, I’m so DAMN MAD at watching my husband, a good man, work hard and never get ahead. He can’t keep his family safe, and he can’t fix his broken daughter. He deserves to come home and hug his family, pay the bills, kick the dog (that’s a joke) and do what good men do.
Our other children deserve all the time they haven’t been able to get from their parents. All of the attention they deserve. All the help with their homework they can use. They are AMAZING. They deserve to have a childhood.
That poor woman who called. She had no idea when she called me to give me the “not so good” news that I was dancing so close to the edge.
What do you do when you’ve done all you can do? When every decision is out of your hands?
posted by triggerfinger at 4:46 PM on September 7, 2013 [8 favorites]
Senile Dementia patients can also be violent. If you live long enough, you might be the one attacking your family.
When and if that happens, I hope I have a caregiver with the love and courage to put me down.
posted by dephlogisticated at 4:48 PM on September 7, 2013 [27 favorites]
When and if that happens, I hope I have a caregiver with the love and courage to put me down.
posted by dephlogisticated at 4:48 PM on September 7, 2013 [27 favorites]
I find it easy to sympathize with Kelli, without excusing attempted murder at all, because there's an obvious villain in her suffering, which is a community that failed to give her the support she so obviously needed and deserved.
It's not hard to sympathize with Issy for being autistic, but the villain in that case is inchoate and hard to locate properly. Genes? Bad luck? Vaccine? And with respect to the attempted murder, the villain is a broken caregiver who's beyond the bend herself, so it's not so easy to be just straightforwardly angry at her.
But for the obvious issue of not giving caregivers the support they need--that's easy to point the finger at and just scream.
posted by fatbird at 4:51 PM on September 7, 2013 [4 favorites]
It's not hard to sympathize with Issy for being autistic, but the villain in that case is inchoate and hard to locate properly. Genes? Bad luck? Vaccine? And with respect to the attempted murder, the villain is a broken caregiver who's beyond the bend herself, so it's not so easy to be just straightforwardly angry at her.
But for the obvious issue of not giving caregivers the support they need--that's easy to point the finger at and just scream.
posted by fatbird at 4:51 PM on September 7, 2013 [4 favorites]
What was illustrative for me was to compare the typical responses in situations like Kelli Stapleton's to the typical responses in situations like Andrea Yates. There is not a lot of sympathy out there for mothers who kill their (able-bodied, healthy, neurotypical) children.
well, for what it's worth - there was sympathy for andrea yates, especially among communities of formerly devoutly religious women who broke out of abusive systems. as an ex-mormon who saw what strict full quiver type mentalities can do to women who absolutely shouldn't be having that many kids, especially with the amount of support those mothers tend to get for mental health in those sorts of communities - i was angry, and i thought what she did was horrible - but i've always been maybe even angrier that there was not a legal penalty for her husband, because in my mind he might as well have held the kids down with andrea for all he had to do with that situation.
you can actually see mefites still struggling amongst each other 10 years later about how much sympathy and compassion people feel for her.
posted by nadawi at 4:54 PM on September 7, 2013 [8 favorites]
well, for what it's worth - there was sympathy for andrea yates, especially among communities of formerly devoutly religious women who broke out of abusive systems. as an ex-mormon who saw what strict full quiver type mentalities can do to women who absolutely shouldn't be having that many kids, especially with the amount of support those mothers tend to get for mental health in those sorts of communities - i was angry, and i thought what she did was horrible - but i've always been maybe even angrier that there was not a legal penalty for her husband, because in my mind he might as well have held the kids down with andrea for all he had to do with that situation.
you can actually see mefites still struggling amongst each other 10 years later about how much sympathy and compassion people feel for her.
posted by nadawi at 4:54 PM on September 7, 2013 [8 favorites]
Again, I'm not talking about personal feelings/expressions of sympathy or empathy. I'm talking about how these cases are covered in the national media, and what that reveals about how we think about disabled children. Normal-seeming children are a blessing. Disabled children are a burden, as an axiom.
posted by muddgirl at 4:58 PM on September 7, 2013 [8 favorites]
posted by muddgirl at 4:58 PM on September 7, 2013 [8 favorites]
In other words, people express sympathy towards Andrea not because her children are near-universally recognized as an unbearable burden.
posted by muddgirl at 5:06 PM on September 7, 2013 [1 favorite]
posted by muddgirl at 5:06 PM on September 7, 2013 [1 favorite]
> Disabled children are a burden, as an axiom.
A child with severe autism and constant violent outbursts that make them a danger to themselves and others is a burden.
posted by lupus_yonderboy at 5:07 PM on September 7, 2013 [53 favorites]
A child with severe autism and constant violent outbursts that make them a danger to themselves and others is a burden.
posted by lupus_yonderboy at 5:07 PM on September 7, 2013 [53 favorites]
This all reminds me of an old Reddit thread asking parents of disabled children how they felt.
It's worth a read.
posted by Grimgrin at 5:15 PM on September 7, 2013 [6 favorites]
It's worth a read.
posted by Grimgrin at 5:15 PM on September 7, 2013 [6 favorites]
I left this as a response to a post about this on another site.
Disclosure: I've been living with a mood disorder for most of my adult life. I was diagnosed with a "learning disability" at age 11 back in 1979. I know a little something about feeling like I don't deserve to exist because there's something "wrong" with me. I am also the mother of a kid on the spectrum.posted by echolalia67 at 5:17 PM on September 7, 2013 [22 favorites]
Let's keep in mind that many of the people who are saying that it's understandable that the mother of "one of those children" would snap and try to kill her daughter are probably the same people who were saying that they don't want their kids to have to go to the same schools as kids on the spectrum, who say that Special Education programs are a waste of money that would be better spent on "normal" children, that "those kids" are monsters who should have never been born, who wonder out loud what that mother did wrong to end up with "a kid like that", etc.,. These are the people who make excuses for teachers who bind children's feet with duct tape to keep them from taking their shoes off, who put dishwashing soap in the mouths of kids with ASD a form of "discipline", who belittle, mock and tease their students until they snap and then call the police to put the kids into stress positions to "keep everyone safe".
This is the stream that families in the ASD tribe have to swim against everyday. If you're a little emotionally fragile like me, some days if feels like it would just be easier to stop struggling and let that stream pull you under. I don't because I can't (whatever I think about my life, I know my kid loves his and doesn't want to go anywhere) but someone who is a little more isolated, a little less grounded?
I could see someone deciding that they just can't tolerate the pain anymore. But then they think, "...what about my kid? How can I leave this world and abandon my child to the tender mercies of the jackals who say that she/he should have never existed in the first place?" The rest of the story writes itself.
TL;DR: The hate in this world for people who are a little more different is toxic. It can break someone's mind and crush their spirit. A parent in that state of mind is a broken person and needs help, not because of the strain of having "a child like that" but because they and their child live in a world full of ignorant and hateful people who do not wish them well.
All children are a burden, to some extent (raise your hand if you were a biter - I was. My neurotypical husband used to throw such violent, public tantrums that he'd injure himself). But that's not how we choose to think about them as a society.
(It's also not entirely clear to me that Issy was suffering from outbursts at the time of her attempted murder. She had been released from an in-patient program only a week earlier and had a behavior plan. It's not entirely clear to me that Kelli was suffering from a lack of community resources, either - she details many of them in her final blog post. Murder/suicide is not a rational decision no matter the victim or perpetrator.)
posted by muddgirl at 5:20 PM on September 7, 2013 [4 favorites]
(It's also not entirely clear to me that Issy was suffering from outbursts at the time of her attempted murder. She had been released from an in-patient program only a week earlier and had a behavior plan. It's not entirely clear to me that Kelli was suffering from a lack of community resources, either - she details many of them in her final blog post. Murder/suicide is not a rational decision no matter the victim or perpetrator.)
posted by muddgirl at 5:20 PM on September 7, 2013 [4 favorites]
hal_c_on: She could have called 911 (not an agency, not a support person, but 911) and said "please come take me or my child as I will do something drastic in the next 10 minutes",
Well, obviously, she couldn't have. She was very clearly mentally and emotionally incapable of doing that. It's easy to sit in judgment when you're not the one living through hell--and more, a hell that is guaranteed eternal.
If you think that having compassion for someone in Kelli's situation is the same as saying "we should murder autistic children--it's sensible and moral," then I can't help you.
posted by tzikeh at 5:25 PM on September 7, 2013 [52 favorites]
Well, obviously, she couldn't have. She was very clearly mentally and emotionally incapable of doing that. It's easy to sit in judgment when you're not the one living through hell--and more, a hell that is guaranteed eternal.
If you think that having compassion for someone in Kelli's situation is the same as saying "we should murder autistic children--it's sensible and moral," then I can't help you.
posted by tzikeh at 5:25 PM on September 7, 2013 [52 favorites]
This all reminds me of an old Reddit thread asking parents of disabled children how they felt.
God, that thread was terrible, and really truly was one of the last straw's for me. That was pretty much when I knew I needed to get off the macabre carnival ride that is Reddit.
posted by SkylitDrawl at 5:27 PM on September 7, 2013 [1 favorite]
God, that thread was terrible, and really truly was one of the last straw's for me. That was pretty much when I knew I needed to get off the macabre carnival ride that is Reddit.
posted by SkylitDrawl at 5:27 PM on September 7, 2013 [1 favorite]
Again, I'm not talking about personal feelings/expressions of sympathy or empathy. I'm talking about how these cases are covered in the national media, and what that reveals about how we think about disabled children. Normal-seeming children are a blessing. Disabled children are a burden, as an axiom.
In other words, people express sympathy towards Andrea not because her children are near-universally recognized as an unbearable burden.
muddgirl - i totally agree with you about the reporting - in writing my comment i edited out a section i couldn't get to sound right about how it is absolutely proper to check our language and the way things are reported, and i do agree that there is a difference there. i was just saying that the difference isn't expressing compassion or sympathy for the murderers, since that is something that there is always an argument about to some degree (i mean, just recently it flared up about the boston bombing).
i will say about andrea yates specifically, because of the intersection of mental illness and a lack of needed and previously begged for support, there is a large strain of the conversation that discusses the number of children in her situation as the reason for the sympathy - they weren't universally seen as a blessing.
posted by nadawi at 5:31 PM on September 7, 2013 [1 favorite]
In other words, people express sympathy towards Andrea not because her children are near-universally recognized as an unbearable burden.
muddgirl - i totally agree with you about the reporting - in writing my comment i edited out a section i couldn't get to sound right about how it is absolutely proper to check our language and the way things are reported, and i do agree that there is a difference there. i was just saying that the difference isn't expressing compassion or sympathy for the murderers, since that is something that there is always an argument about to some degree (i mean, just recently it flared up about the boston bombing).
i will say about andrea yates specifically, because of the intersection of mental illness and a lack of needed and previously begged for support, there is a large strain of the conversation that discusses the number of children in her situation as the reason for the sympathy - they weren't universally seen as a blessing.
posted by nadawi at 5:31 PM on September 7, 2013 [1 favorite]
There's a lack of compassion here, a lack of respect and empathy in some of the responses here that I find just as upsetting as the story. I don't know if MeFi is changing, or I am, but some of the responses here are making me question whether or not I should be here.
Are some of you really inferring that sympathy for Kelli automatically equates to approval of her actions? Can you really point at the support network (or lack) and go "Well, there's your problem!" so readily?? Is singling out one item to bang on about even appropriate, let alone helpful? Or even trying to figure out who the real victim is? When did Metafilter become so full of black/white binary thinking when we used to be so good about dealing with the shades of grey?
Please. Before you start with the "She should have..." and "Well, I would have...." and all the rest, just stop for a moment and understand that you're passing judgement on people. I'm not trying to prevent you having your opinions, but I AM begging you to go gently. We are all of us human. Please remember that and show some damn respect - to the people involved AND to the people here.
posted by ninazer0 at 5:35 PM on September 7, 2013 [30 favorites]
Are some of you really inferring that sympathy for Kelli automatically equates to approval of her actions? Can you really point at the support network (or lack) and go "Well, there's your problem!" so readily?? Is singling out one item to bang on about even appropriate, let alone helpful? Or even trying to figure out who the real victim is? When did Metafilter become so full of black/white binary thinking when we used to be so good about dealing with the shades of grey?
Please. Before you start with the "She should have..." and "Well, I would have...." and all the rest, just stop for a moment and understand that you're passing judgement on people. I'm not trying to prevent you having your opinions, but I AM begging you to go gently. We are all of us human. Please remember that and show some damn respect - to the people involved AND to the people here.
posted by ninazer0 at 5:35 PM on September 7, 2013 [30 favorites]
That Issa is autistic is less relevant than the fact that she's a 14 year old who has already put her mother in the hospital multiple times.
posted by Pruitt-Igoe at 5:36 PM on September 7, 2013 [30 favorites]
posted by Pruitt-Igoe at 5:36 PM on September 7, 2013 [30 favorites]
P-I, it's relevant because a neurotypical kid who did that would be subject to a juvenile court. Totally different situation.
posted by emjaybee at 5:48 PM on September 7, 2013 [8 favorites]
posted by emjaybee at 5:48 PM on September 7, 2013 [8 favorites]
I feel sympathy for Kelli in that she's found herself in a situation where she concluded, rationally or not, that the best way forward was to kill both herself and her daughter, which I would assume suggests she thought the situation pretty damn horrible, which is a terrible thing. But I feel like there's definitely an undercurrent in the reporting and some of the comments here suggesting that we should take it as read the situation was objectively that horrible on the grounds Issy is autistic.
posted by hoyland at 5:59 PM on September 7, 2013
posted by hoyland at 5:59 PM on September 7, 2013
Please point me to anybody saying that murder-suicide was the rational thing to do.
posted by Holy Zarquon's Singing Fish at 6:03 PM on September 7, 2013 [1 favorite]
posted by Holy Zarquon's Singing Fish at 6:03 PM on September 7, 2013 [1 favorite]
Hoyland isn't saying anyone is calling it rational other then perhaps the mother, who in her frame of mind, chose to kill herself and her child. Is that rational from an outsider perspective? No, of course not, but in her mind, she thought it was.
Or put another way, no-one commits suicide thinking "This is an irrational thing to do!" they more likely think "This is the only option open to me".
posted by Static Vagabond at 6:09 PM on September 7, 2013 [1 favorite]
Or put another way, no-one commits suicide thinking "This is an irrational thing to do!" they more likely think "This is the only option open to me".
posted by Static Vagabond at 6:09 PM on September 7, 2013 [1 favorite]
evil
No. Wrong, desperate. Not evil.
posted by sunshinesky at 6:17 PM on September 7, 2013 [16 favorites]
No. Wrong, desperate. Not evil.
posted by sunshinesky at 6:17 PM on September 7, 2013 [16 favorites]
I have a couple friends with kids who have Autism. It's rough and there isn't the support they need.
One lives in Canada. We here a lot about how great Canadian health care system is.
Well it's probably no better for ASD people than the U. S. system
The same lack of support, the same disdain, the same dealing roughly with the kids.
My other friend's son on the ASD spectrum is probably doing better.
He is in the care of the lady who adopted my friend.
He isn't violent, but he likes to chuck things out the window and go out in his diaper, and his caregiver is over 70.
Not every person with Autism is Temple Grandin.
Most are not going to be o.k. on there on.
If this woman was blogging instead of calling 911, shame on her!
But you need to realize there's limits to what hospitals do in these cases.
Often it's 'treatment banale' and back out to start in with the same stuff again.
It's true of other things that go wrong with people.
I feel so bad for all involved. The system is broken.
Sometimes people get broken beyond repair too.
posted by Katjusa Roquette at 6:19 PM on September 7, 2013 [3 favorites]
One lives in Canada. We here a lot about how great Canadian health care system is.
Well it's probably no better for ASD people than the U. S. system
The same lack of support, the same disdain, the same dealing roughly with the kids.
My other friend's son on the ASD spectrum is probably doing better.
He is in the care of the lady who adopted my friend.
He isn't violent, but he likes to chuck things out the window and go out in his diaper, and his caregiver is over 70.
Not every person with Autism is Temple Grandin.
Most are not going to be o.k. on there on.
If this woman was blogging instead of calling 911, shame on her!
But you need to realize there's limits to what hospitals do in these cases.
Often it's 'treatment banale' and back out to start in with the same stuff again.
It's true of other things that go wrong with people.
I feel so bad for all involved. The system is broken.
Sometimes people get broken beyond repair too.
posted by Katjusa Roquette at 6:19 PM on September 7, 2013 [3 favorites]
Vaccine?
No, and shame on you for suggesting it.
posted by Horace Rumpole at 6:24 PM on September 7, 2013 [76 favorites]
No, and shame on you for suggesting it.
posted by Horace Rumpole at 6:24 PM on September 7, 2013 [76 favorites]
Jesus. I don't have any real words, just complete sympathy for this whole family. And a lot of frustration.
posted by roomthreeseventeen at 6:30 PM on September 7, 2013 [3 favorites]
posted by roomthreeseventeen at 6:30 PM on September 7, 2013 [3 favorites]
trying to murder her child is insulting to the millions of parents of autistic children
Symptoms of autism manifest themselves in widely different ways. Some kids obsess about talk show hosts. Some kids always have to have shiny ribbons in their hand and don't want to wear shoes. Some kids are so violent that they have broken people's limbs. It's luck of the draw and I can understand being at the end of your rope. Not every parent of an autistic child is experiencing the same thing, so, it's unfair to say she needed to buck up cuz others are able to deal.
posted by Foam Pants at 6:50 PM on September 7, 2013 [26 favorites]
Symptoms of autism manifest themselves in widely different ways. Some kids obsess about talk show hosts. Some kids always have to have shiny ribbons in their hand and don't want to wear shoes. Some kids are so violent that they have broken people's limbs. It's luck of the draw and I can understand being at the end of your rope. Not every parent of an autistic child is experiencing the same thing, so, it's unfair to say she needed to buck up cuz others are able to deal.
posted by Foam Pants at 6:50 PM on September 7, 2013 [26 favorites]
I don't think "autistic" and "disabled" are useful descriptive terms in this situation. Autism is described as a spectrum because it manifests very differently in different people. Taking care of "an autistic child" can mean a thousand different things. In this case it meant taking care of a child who was frequently and sometimes suddenly dangerously violent, a child whose violent actions sent her mother to the hospital more than once.
Our society is doing this wrong. And no, I don't mean "our government" or "our social services". I mean "our society". Having a child shouldn't be a game of Russian roulette with a ten thousand-chambered revolver, even if only one chamber is loaded. Morality should not require anyone -- a parent or otherwise -- to put their life and bodily integrity at risk for the sake of another person who treats them with ongoing violence. Yet that is what we demand from a parent who gets that loaded chamber and ends up with a child who exhibits regular episodes of uncontrollable violence.
This isn't about it being "too much work" to take care of a disabled child. This is about an impossible situation that the rest of the world was trying to pretend wasn't impossible.
posted by alms at 7:08 PM on September 7, 2013 [52 favorites]
Our society is doing this wrong. And no, I don't mean "our government" or "our social services". I mean "our society". Having a child shouldn't be a game of Russian roulette with a ten thousand-chambered revolver, even if only one chamber is loaded. Morality should not require anyone -- a parent or otherwise -- to put their life and bodily integrity at risk for the sake of another person who treats them with ongoing violence. Yet that is what we demand from a parent who gets that loaded chamber and ends up with a child who exhibits regular episodes of uncontrollable violence.
This isn't about it being "too much work" to take care of a disabled child. This is about an impossible situation that the rest of the world was trying to pretend wasn't impossible.
posted by alms at 7:08 PM on September 7, 2013 [52 favorites]
Hi - parent of seriously disabled child here.
I'm not sure exactly what I mean to add to this discussion, except to note that this is indeed very hard. My partner and I are extraordinarily lucky to be secure in our careers, can back off work somewhat and still afford the absolutely crushing financial burden this entails. We're both stable, loving people. But the reality of a child who needs (truly) constant attention, with violent outbursts, who faces daunting prospects for independence later in life - is devastating. There are so many awful realities that are never far from mind: I am 35 years older than my child. The public services available to the severely disabled - especially housing - are horrifying. Evil. And then there's the reality for the parents: Very, very little time for myself. Career aspirations, ambitions, sleep evaporate. Divorce is the rule.
Like anything else, there are gifts: No time for my own fears and inhibitions. And the challenges truly don't, in any way, diminish the joy of parenting. Quite the contrary.
I suspect that this all wouldn't be as hard for a parent that _wasn't_ desperately trying to build a good life for a child that's a little different from their peers. I'm loathe to trot this out, but: I don't think you can understand how hard it is until you've done it. That's been my experience, even with those who are closest to me but don't do this daily. This certainly is an insane and horrible act, but as others have already said better, I think the order of the day is sadness, not righteousness, and perhaps some thought to how to help all those involved.
posted by throwaway account because, well at 7:26 PM on September 7, 2013 [72 favorites]
I'm not sure exactly what I mean to add to this discussion, except to note that this is indeed very hard. My partner and I are extraordinarily lucky to be secure in our careers, can back off work somewhat and still afford the absolutely crushing financial burden this entails. We're both stable, loving people. But the reality of a child who needs (truly) constant attention, with violent outbursts, who faces daunting prospects for independence later in life - is devastating. There are so many awful realities that are never far from mind: I am 35 years older than my child. The public services available to the severely disabled - especially housing - are horrifying. Evil. And then there's the reality for the parents: Very, very little time for myself. Career aspirations, ambitions, sleep evaporate. Divorce is the rule.
Like anything else, there are gifts: No time for my own fears and inhibitions. And the challenges truly don't, in any way, diminish the joy of parenting. Quite the contrary.
I suspect that this all wouldn't be as hard for a parent that _wasn't_ desperately trying to build a good life for a child that's a little different from their peers. I'm loathe to trot this out, but: I don't think you can understand how hard it is until you've done it. That's been my experience, even with those who are closest to me but don't do this daily. This certainly is an insane and horrible act, but as others have already said better, I think the order of the day is sadness, not righteousness, and perhaps some thought to how to help all those involved.
posted by throwaway account because, well at 7:26 PM on September 7, 2013 [72 favorites]
You know what - I do empathize with the mom, the dad and the kid.
We are weak. Physically, intellectually and emotionally. The daughter wasn't the only person with an issue here and for us to look at the mother's suffering and go 'well she shouldn't have done it! it was wrong!' is asinine at best and some cold quasi-sociopathic shit at worst.
It is very likely that mother and child had mental illnesses here and to write them off as if they were somehow 'lesser illnesses' to physical ones is, pardon the phrasing, crazy.
Everyone here needed help. Mom snapped at the worst possible time in the worst possible way. She broke.
I hope she gets fixed. I hope her daughter can forgive her some day.
posted by Fuka at 7:26 PM on September 7, 2013 [2 favorites]
We are weak. Physically, intellectually and emotionally. The daughter wasn't the only person with an issue here and for us to look at the mother's suffering and go 'well she shouldn't have done it! it was wrong!' is asinine at best and some cold quasi-sociopathic shit at worst.
It is very likely that mother and child had mental illnesses here and to write them off as if they were somehow 'lesser illnesses' to physical ones is, pardon the phrasing, crazy.
Everyone here needed help. Mom snapped at the worst possible time in the worst possible way. She broke.
I hope she gets fixed. I hope her daughter can forgive her some day.
posted by Fuka at 7:26 PM on September 7, 2013 [2 favorites]
Count up the number of times in this thread that someone has called for empathy and understanding for the mom, and how many times anyone has called for empathy and understanding for the frightened, abused child.
Yeah, I thought so. Empathy only goes one way.
As for all the "but she was violent" people - read this. First hand testimony from an autistic person who was violent as a teen. See if you can summon a bit of empathy for the victim's feelings, stresses and pain.
http://youneedacat.tumblr.com/post/60501253141/on-violence-and-gerrymandering-and-murder
posted by dbltall at 7:37 PM on September 7, 2013 [10 favorites]
Yeah, I thought so. Empathy only goes one way.
As for all the "but she was violent" people - read this. First hand testimony from an autistic person who was violent as a teen. See if you can summon a bit of empathy for the victim's feelings, stresses and pain.
http://youneedacat.tumblr.com/post/60501253141/on-violence-and-gerrymandering-and-murder
posted by dbltall at 7:37 PM on September 7, 2013 [10 favorites]
Count up the number of times in this thread that someone has called for empathy and understanding for the mom, and how many times anyone has called for empathy and understanding for the frightened, abused child.
I suspect that's because empathy and understanding for a victim of attempted murder is taken as a given, though, while empathy and understanding for an attempted murderer isn't, usually.
I do get what people are saying, and my heart breaks for Issy and the mess that her life is likely to become now, too. But I also don't like the binary "If you express compassion for one, you're obviously antipathetic to the other" framing that pops up here. I think one can be appalled by the way disabled family members are routinely assumed to be "burdens" (with a strong suggestion of "unwanted burdens") and yet still feel compassion for their families who are trying to juggle all these responsibilities and expenses.
Caregiving is hard. It obviously overwhelmed this woman, with horrendous consequences for the entire family.
posted by jaguar at 7:49 PM on September 7, 2013 [34 favorites]
I suspect that's because empathy and understanding for a victim of attempted murder is taken as a given, though, while empathy and understanding for an attempted murderer isn't, usually.
I do get what people are saying, and my heart breaks for Issy and the mess that her life is likely to become now, too. But I also don't like the binary "If you express compassion for one, you're obviously antipathetic to the other" framing that pops up here. I think one can be appalled by the way disabled family members are routinely assumed to be "burdens" (with a strong suggestion of "unwanted burdens") and yet still feel compassion for their families who are trying to juggle all these responsibilities and expenses.
Caregiving is hard. It obviously overwhelmed this woman, with horrendous consequences for the entire family.
posted by jaguar at 7:49 PM on September 7, 2013 [34 favorites]
how many times anyone has called for empathy and understanding for the frightened, abused child
Everyone, absolutely everyone here is horrified by this situation and understands that this is a very ill child whose needs far outstrip what her family have been able to provide. In all seriousness, what else do you want? The child's illness is a real and serious threat to her own well-being and the well-being of everyone around her. I don't know what empathy and understanding mean with regard to this child's illness, apart from the acknowledgement, which everyone here would be happy to make, that this child is grievously ill. Calls for empathy with the mom are coming because someone who's not familiar with the reality of severe mental illness can easily come to think of her as some kind of rapacious monster. The child already has our best sympathies, but this is one of the cases where it's not actually clear what appropriate care and treatment even mean in this situation.
posted by Nomyte at 7:51 PM on September 7, 2013 [18 favorites]
Everyone, absolutely everyone here is horrified by this situation and understands that this is a very ill child whose needs far outstrip what her family have been able to provide. In all seriousness, what else do you want? The child's illness is a real and serious threat to her own well-being and the well-being of everyone around her. I don't know what empathy and understanding mean with regard to this child's illness, apart from the acknowledgement, which everyone here would be happy to make, that this child is grievously ill. Calls for empathy with the mom are coming because someone who's not familiar with the reality of severe mental illness can easily come to think of her as some kind of rapacious monster. The child already has our best sympathies, but this is one of the cases where it's not actually clear what appropriate care and treatment even mean in this situation.
posted by Nomyte at 7:51 PM on September 7, 2013 [18 favorites]
To me there's a distinction between someone trying to kill their child and someone trying to kill their child and themselves at the same time. Simple attempted murder of a child is much easier to see as a cut and dry "evil" thing, but attempted murder-suicide, and in this specific scenario especially, just screams that this woman felt neither she or her child had any chance of making their of their lives better, ever. She felt that they were both out of options, and saw no other way out. That is nothing short of tragic and heartbreaking in every sense. I first read this post hours ago and cannot get it out of my mind.
posted by something something at 7:56 PM on September 7, 2013 [22 favorites]
posted by something something at 7:56 PM on September 7, 2013 [22 favorites]
From dbltall's link:
I have just read a whole series of posts attacking autistic people who say it’s wrong to murder us, because of the attempted murder of Issy. Because if they’re capable of objecting to murder they must be high functioning and would never understand what it’s like to be one of those violent autistic people (who are apparently never high functioning, except when they are). So they should shut up. I was one of those people. I will not shut up. An autistic person having a violence problem neither justifies nor explains murder. (And if being violent justifies murder, why does murder not justify something as minor as condemnation?)
We are not less than autistic people without violence problems. We are not less than nonautistic people. We are not less than anyone. And many of us can talk or write, fancy that.
But this gerrymandering technique is an old one, and doubtless finer and finer distinctions will be made until the only people allowed to talk about murder of autistic people will be those who sympathize with the murderers. Somehow it always works like that.
I respect this blogger's fierce insistence on his/her own worth and agree with them. At the same time, if I had been the unwitting target of a finger dislocation, being tackled, being knocked down, being clawed at, or being sent to the ER, as the blogger describes, I would also be afraid of them. I don't think that's unreasonable at all on my part. I don't want to be hurt, even by someone who is not at fault for hurting me.
Empathy doesn't only go one way, dbltall. Issy didn't deserve what happened to her. She has people advocating for her, who would give almost anything to free her from what autism has done to her. I think she is loved, even if you discount her mother at this point, she has been loved and cared for by her family.
Issy didn't cause this to happen to her, anymore than she caused her own autism or violent episodes. The sad irony of all this is that the outrage over what happened may actually result in her getting some resources (if she survives) through the intervention and advocacy of strangers who heard about it. How fucked up is that?
posted by emjaybee at 7:58 PM on September 7, 2013 [18 favorites]
I have just read a whole series of posts attacking autistic people who say it’s wrong to murder us, because of the attempted murder of Issy. Because if they’re capable of objecting to murder they must be high functioning and would never understand what it’s like to be one of those violent autistic people (who are apparently never high functioning, except when they are). So they should shut up. I was one of those people. I will not shut up. An autistic person having a violence problem neither justifies nor explains murder. (And if being violent justifies murder, why does murder not justify something as minor as condemnation?)
We are not less than autistic people without violence problems. We are not less than nonautistic people. We are not less than anyone. And many of us can talk or write, fancy that.
But this gerrymandering technique is an old one, and doubtless finer and finer distinctions will be made until the only people allowed to talk about murder of autistic people will be those who sympathize with the murderers. Somehow it always works like that.
I respect this blogger's fierce insistence on his/her own worth and agree with them. At the same time, if I had been the unwitting target of a finger dislocation, being tackled, being knocked down, being clawed at, or being sent to the ER, as the blogger describes, I would also be afraid of them. I don't think that's unreasonable at all on my part. I don't want to be hurt, even by someone who is not at fault for hurting me.
Empathy doesn't only go one way, dbltall. Issy didn't deserve what happened to her. She has people advocating for her, who would give almost anything to free her from what autism has done to her. I think she is loved, even if you discount her mother at this point, she has been loved and cared for by her family.
Issy didn't cause this to happen to her, anymore than she caused her own autism or violent episodes. The sad irony of all this is that the outrage over what happened may actually result in her getting some resources (if she survives) through the intervention and advocacy of strangers who heard about it. How fucked up is that?
posted by emjaybee at 7:58 PM on September 7, 2013 [18 favorites]
Of course I feel empathy for the daughter. I think everyone here does. No one is saying that this was a right or good or acceptable action.
I read the link you posted, and several lines stood out to me. Lines like this one: I attacked them more often, driven by forces I couldn't understand or control. and this one I dislocated a good friend’s finger. I still don’t know why. I don’t even remember doing it, just an adrenaline filled blur. I have no doubt that autistic people with violent tendencies can be high functioning. I have no doubt that they can often learn to control those behaviors. I also have no moral uncertainty that violent or not, high functioning or not, people do not deserve to be murdered.
Any yet, those behaviors place a huge amount of stress on caregivers, and without the proper support, I do have empathy for someone who felt they could not handle them any longer and saw no way out - even if I do not in any way condone the action she took. A neurotypical person exhibiting those behaviors would be locked up or kept away by restraining order.
posted by Nothing at 8:06 PM on September 7, 2013 [9 favorites]
I read the link you posted, and several lines stood out to me. Lines like this one: I attacked them more often, driven by forces I couldn't understand or control. and this one I dislocated a good friend’s finger. I still don’t know why. I don’t even remember doing it, just an adrenaline filled blur. I have no doubt that autistic people with violent tendencies can be high functioning. I have no doubt that they can often learn to control those behaviors. I also have no moral uncertainty that violent or not, high functioning or not, people do not deserve to be murdered.
Any yet, those behaviors place a huge amount of stress on caregivers, and without the proper support, I do have empathy for someone who felt they could not handle them any longer and saw no way out - even if I do not in any way condone the action she took. A neurotypical person exhibiting those behaviors would be locked up or kept away by restraining order.
posted by Nothing at 8:06 PM on September 7, 2013 [9 favorites]
I think it might be more productive to focus our discussion more on media coverage of this attempted murder/suicide, as muddgirl brought up.
I find very disturbing the difference in how this story is being covered, and how other murder/suicides involving children without disabilities are covered in the media. Ordinarily, parents who kill or attempt to kill their children and themselves are treated as moral monsters, but in this case, the story is treated as a morally complex tragedy.
The thing is, I think that it is appropriate and good in all situations for a person passing moral judgment to attempt to understand and have empathy for all of the parties. It's pragmatically good in the sense that it helps us to understand why people do terrible things, so we as a society can attempt to prevent these from recurring. I also think it is good in an absolute sense, in that the capacity for empathy is a virtue we should all cultivate, especially when it is difficult. I also think it's important to recognize that while purely evil moral monsters do exist, they are rare, and it's much more common that people are complex, that often they don't set out to do bad things. I think having this mindset of attempting to understand a situation, and to treat all human beings as respectfully as possible, is shared by a whole lot of MeFites, and that that is one of the reasons I am here.
The problem is, the outrage that people on the autism spectrum and other people with disabilities are expressing in blogs and elsewhere is based upon media reports, and I see it as wholly justified. Other suicide/murderers are monsters; Kelli Stapleton gets sympathy. The reason for this is that Issy is autistic.
So, I imagine that a person with a disability who is a part of a community protesting this disparity in media treatment and also a MeFite could come to this thread expecting to hear people decry the way the media have sympathy for Kelli Stapleton in a way they ordinarily do not. And encountering instead expressions of empathy for all parties could be shocking.
I suppose what I am saying is that I'd wish people to be aware of the perspective of people with ASD and other disabilties. While I agree that it's good to have a complex and multivalent approach to the situation, it's also good to acknowledge that the message that the media are sending--that parents who try to kill their children are monsters, but not if the children have substantial disabilities--is morally repugnant.
posted by DrMew at 8:12 PM on September 7, 2013 [12 favorites]
I find very disturbing the difference in how this story is being covered, and how other murder/suicides involving children without disabilities are covered in the media. Ordinarily, parents who kill or attempt to kill their children and themselves are treated as moral monsters, but in this case, the story is treated as a morally complex tragedy.
The thing is, I think that it is appropriate and good in all situations for a person passing moral judgment to attempt to understand and have empathy for all of the parties. It's pragmatically good in the sense that it helps us to understand why people do terrible things, so we as a society can attempt to prevent these from recurring. I also think it is good in an absolute sense, in that the capacity for empathy is a virtue we should all cultivate, especially when it is difficult. I also think it's important to recognize that while purely evil moral monsters do exist, they are rare, and it's much more common that people are complex, that often they don't set out to do bad things. I think having this mindset of attempting to understand a situation, and to treat all human beings as respectfully as possible, is shared by a whole lot of MeFites, and that that is one of the reasons I am here.
The problem is, the outrage that people on the autism spectrum and other people with disabilities are expressing in blogs and elsewhere is based upon media reports, and I see it as wholly justified. Other suicide/murderers are monsters; Kelli Stapleton gets sympathy. The reason for this is that Issy is autistic.
So, I imagine that a person with a disability who is a part of a community protesting this disparity in media treatment and also a MeFite could come to this thread expecting to hear people decry the way the media have sympathy for Kelli Stapleton in a way they ordinarily do not. And encountering instead expressions of empathy for all parties could be shocking.
I suppose what I am saying is that I'd wish people to be aware of the perspective of people with ASD and other disabilties. While I agree that it's good to have a complex and multivalent approach to the situation, it's also good to acknowledge that the message that the media are sending--that parents who try to kill their children are monsters, but not if the children have substantial disabilities--is morally repugnant.
posted by DrMew at 8:12 PM on September 7, 2013 [12 favorites]
The reason for this is that Issy is autistic.
Wrong. The reason is that Issy is an extremely violent young woman who has put her mother in the hospital several times, and the reason is that this family could not afford to get her the round-the-clock help she needed.
posted by roomthreeseventeen at 8:16 PM on September 7, 2013 [46 favorites]
Wrong. The reason is that Issy is an extremely violent young woman who has put her mother in the hospital several times, and the reason is that this family could not afford to get her the round-the-clock help she needed.
posted by roomthreeseventeen at 8:16 PM on September 7, 2013 [46 favorites]
I'm wondering what kind of awful society forces parents to care for horribly disabled autistic people. Is institutionalizing them an option under current disability benefits? To saddle a parent with this all-consuming burden is just crazy.
posted by Unified Theory at 8:16 PM on September 7, 2013 [4 favorites]
posted by Unified Theory at 8:16 PM on September 7, 2013 [4 favorites]
The reason for this is that Issy is autistic.
No, I think the reason is that Issy is compulsively violent and makes the people around her feel their lives are unbearable. There are many, many autistic people for whom that isn't the case!
posted by Justinian at 8:17 PM on September 7, 2013 [15 favorites]
No, I think the reason is that Issy is compulsively violent and makes the people around her feel their lives are unbearable. There are many, many autistic people for whom that isn't the case!
posted by Justinian at 8:17 PM on September 7, 2013 [15 favorites]
I attacked them more often, driven by forces I couldn't understand or control.
It struck me that this could also describe the feelings an overwhelmed caregiver.
posted by rtha at 8:24 PM on September 7, 2013 [11 favorites]
It struck me that this could also describe the feelings an overwhelmed caregiver.
posted by rtha at 8:24 PM on September 7, 2013 [11 favorites]
Earlier this year, an Ottawa woman brought her 19-year-old son Philippe to a provincial developmental services office and left him there.
There's a push on for a Family Bill of Rights as a result of this story, which would help families with children with developmental issues.
posted by emeiji at 8:35 PM on September 7, 2013 [1 favorite]
There's a push on for a Family Bill of Rights as a result of this story, which would help families with children with developmental issues.
posted by emeiji at 8:35 PM on September 7, 2013 [1 favorite]
>Other suicide/murderers are monsters; Kelli Stapleton gets sympathy. The reason for this is that Issy is autistic.
I would venture to say that that's because it's a neater, more well packaged narrative.
It's a lot easier to wrap your head around "I had a psychotic breakdown after yet another setback in the sisyphean task of constantly taking care of my violent, autistic daughter who will never be independent".
It's a lot harder to wrap your head around "I had psychotic breakdown after a long yet vague history of abuse and unstable relationships and/or constant economic uncertainty".
Also, yes, as a society the disabled are horribly discriminated against and treated as complete others. Lots of factors; I'm just not sure there's as much of a moral angle on it necessarily.
posted by pmv at 8:38 PM on September 7, 2013 [4 favorites]
I would venture to say that that's because it's a neater, more well packaged narrative.
It's a lot easier to wrap your head around "I had a psychotic breakdown after yet another setback in the sisyphean task of constantly taking care of my violent, autistic daughter who will never be independent".
It's a lot harder to wrap your head around "I had psychotic breakdown after a long yet vague history of abuse and unstable relationships and/or constant economic uncertainty".
Also, yes, as a society the disabled are horribly discriminated against and treated as complete others. Lots of factors; I'm just not sure there's as much of a moral angle on it necessarily.
posted by pmv at 8:38 PM on September 7, 2013 [4 favorites]
You know Sturgeon's Law - 90% of everything is crap ?
This is one of those 130% crap things that makes up for things that are only 50% crap.
Good. Bad. Who cares. The universe is a fucked up place. I feel bad for everyone involved.
posted by Pogo_Fuzzybutt at 8:54 PM on September 7, 2013 [1 favorite]
This is one of those 130% crap things that makes up for things that are only 50% crap.
Good. Bad. Who cares. The universe is a fucked up place. I feel bad for everyone involved.
posted by Pogo_Fuzzybutt at 8:54 PM on September 7, 2013 [1 favorite]
Ordinarily, parents who kill or attempt to kill their children and themselves are treated as moral monsters, but in this case, the story is treated as a morally complex tragedy
Of course the story is treated this way, because it is a morally complex tragedy. Issy can't, at this point, control her violence, and her mother can't, at this point, control her reaction to her violence.
The whole thing is terribly tragic. Programs like Applied Behaviour Analysis work, but take a long time and a lot of money. They also have the best results when started when the person is very young. Respite care is also essential for people caring for family members with challenging behaviour, and the people with the disability themselves.
I've worked with people with challenging behaviour for more than 20 years, and have family experience. The greatest fear amongst my colleagues, who have as much if not more experience than me? That they have an autistic child with challenging behaviour. No one, no matter how loving, compassionate and well-resourced they are, would want that for themselves. None of them would want that for their children either, which is the point I think some posters here are missing - that being unable to control your behaviour, being excluded from your community and from services due to your behaviour is just as hard on the person as their families, if not harder- but the families get it twice over.
posted by goo at 8:56 PM on September 7, 2013 [12 favorites]
Of course the story is treated this way, because it is a morally complex tragedy. Issy can't, at this point, control her violence, and her mother can't, at this point, control her reaction to her violence.
The whole thing is terribly tragic. Programs like Applied Behaviour Analysis work, but take a long time and a lot of money. They also have the best results when started when the person is very young. Respite care is also essential for people caring for family members with challenging behaviour, and the people with the disability themselves.
I've worked with people with challenging behaviour for more than 20 years, and have family experience. The greatest fear amongst my colleagues, who have as much if not more experience than me? That they have an autistic child with challenging behaviour. No one, no matter how loving, compassionate and well-resourced they are, would want that for themselves. None of them would want that for their children either, which is the point I think some posters here are missing - that being unable to control your behaviour, being excluded from your community and from services due to your behaviour is just as hard on the person as their families, if not harder- but the families get it twice over.
posted by goo at 8:56 PM on September 7, 2013 [12 favorites]
Ordinarily, parents who kill or attempt to kill their children and themselves are treated as moral monsters
We absolutely need more compassion for parents who act violently toward their children due to mental illness such as depression. We should treat all desperate parents with as much compassion as reporters and some Mefites are treating Kelli Stapleton--we should shape the national narrative into something that recognizes both the moral wrongness of the behavior and the illness-influenced decision making behind it. Parents who abuse children are not in the same category as those who desperately and in illness try to make death their solution.
posted by librarylis at 8:59 PM on September 7, 2013 [4 favorites]
We absolutely need more compassion for parents who act violently toward their children due to mental illness such as depression. We should treat all desperate parents with as much compassion as reporters and some Mefites are treating Kelli Stapleton--we should shape the national narrative into something that recognizes both the moral wrongness of the behavior and the illness-influenced decision making behind it. Parents who abuse children are not in the same category as those who desperately and in illness try to make death their solution.
posted by librarylis at 8:59 PM on September 7, 2013 [4 favorites]
That's a very fine line, though. Don't you think that many parents who abuse children are mentally ill?
posted by Justinian at 9:14 PM on September 7, 2013
posted by Justinian at 9:14 PM on September 7, 2013
In the blog entry dbltall linked to, youneedcat says at one point, "I learned to stop [being violent] because I was taught how by other people (who actually, happened to be autistic) who stopped much worse violence than I had ever done." The implication is that there is a way out of this violence, and that people like Issy just need the right kind of help, specifically help from autistic people who can better understand what they are going through.
I know there is a lot of conflict and disagreement between higher-functioning autistic people on the one hand, and parents of (possibly lowering functioning) autistic people on the other hand. Does support also happen? Do higher functioning autistic people help out in the homes and lives of families like Kelli and Issy's, either as volunteers or on a paid basis? Kelli made her family's struggles very public. I am curious to know what the response from the autistic community was to that, if there was a response.
posted by alms at 9:17 PM on September 7, 2013 [2 favorites]
I know there is a lot of conflict and disagreement between higher-functioning autistic people on the one hand, and parents of (possibly lowering functioning) autistic people on the other hand. Does support also happen? Do higher functioning autistic people help out in the homes and lives of families like Kelli and Issy's, either as volunteers or on a paid basis? Kelli made her family's struggles very public. I am curious to know what the response from the autistic community was to that, if there was a response.
posted by alms at 9:17 PM on September 7, 2013 [2 favorites]
The people who should be indicted for this crime are the people - ALL the people - who turned their backs on Issy because she was too much trouble. The lack of funding is a bunch of crap - somewhere there is always funding for a person in so much need. The fact is that everyone is scared of her, and rightfully so, but rather than deal with that and help her, they just turned their backs and left it all in her mother's lap - and her father's, of course, but he had to go to work, so Mom became the very-much-resented parent and "boss."
I spent the afternoon reading the whole blog and I think that should be required reading for anyone who thinks they know anything about taking care of a child with this severe a problem.
Years ago when children (and children turn into adults with the same problem) exhibited 250 episodes of extreme violence in a single day, day in and day out, they were institutionalized. Oh, that was a terrible thing to do - so now they're at home with Mom and siblings, attempting to get some sort of therapy through some agency which can be convinced to spare some funding here and there; or not - in which case the "child" attacks family members 250 times a day. Sometimes the "child" outweighs the parent and the parent suffers serious injury many times - yet, because the child is not able to control this behavior, we, as a society, simply ignore it.
Like many others, I was raised in an atmosphere of domestic violence and I thought that was about as bad as it gets, but I was wrong. Years later I worked in a good, decent nursing home in Colorado - yes, it was, before it had to sell out to a chain - and we got a new resident in - a pretty woman in her mid 20s, about 5'7", 135 lbs - who had been kicked out of half a dozen placements for her violent behavior. We had a few episodes, no big deal, but then one day she managed to put two nurses, two aides and another resident in the hospital in less than five minutes - just by literally fighting/punching/kicking/pulling hair/biting - no weapons, no broken windows (that time) - just physically completely wild and out of control.
That's the kind of violence this mother is living every single day with her child, and she's tried and tried and tried to get help, all to no avail. Can anyone seriously say they'd manage to handle it all better than she has? No, they can't.
Now there will be change - now that the media is in the middle of it and the mother has been indicted for attempted murder! That's what it takes now to get something done - no more institutions, no more straitjackets, no more needles - that we know of, anyway. No one wants those horrid things back again, but what are we going to do about this?
posted by aryma at 9:24 PM on September 7, 2013 [28 favorites]
I spent the afternoon reading the whole blog and I think that should be required reading for anyone who thinks they know anything about taking care of a child with this severe a problem.
Years ago when children (and children turn into adults with the same problem) exhibited 250 episodes of extreme violence in a single day, day in and day out, they were institutionalized. Oh, that was a terrible thing to do - so now they're at home with Mom and siblings, attempting to get some sort of therapy through some agency which can be convinced to spare some funding here and there; or not - in which case the "child" attacks family members 250 times a day. Sometimes the "child" outweighs the parent and the parent suffers serious injury many times - yet, because the child is not able to control this behavior, we, as a society, simply ignore it.
Like many others, I was raised in an atmosphere of domestic violence and I thought that was about as bad as it gets, but I was wrong. Years later I worked in a good, decent nursing home in Colorado - yes, it was, before it had to sell out to a chain - and we got a new resident in - a pretty woman in her mid 20s, about 5'7", 135 lbs - who had been kicked out of half a dozen placements for her violent behavior. We had a few episodes, no big deal, but then one day she managed to put two nurses, two aides and another resident in the hospital in less than five minutes - just by literally fighting/punching/kicking/pulling hair/biting - no weapons, no broken windows (that time) - just physically completely wild and out of control.
That's the kind of violence this mother is living every single day with her child, and she's tried and tried and tried to get help, all to no avail. Can anyone seriously say they'd manage to handle it all better than she has? No, they can't.
Now there will be change - now that the media is in the middle of it and the mother has been indicted for attempted murder! That's what it takes now to get something done - no more institutions, no more straitjackets, no more needles - that we know of, anyway. No one wants those horrid things back again, but what are we going to do about this?
posted by aryma at 9:24 PM on September 7, 2013 [28 favorites]
The general emphasis, with child abuse as a whole, is 'identify the situation to get the kid out of the situation' and 'give tools to the parents so that the situations never arise in the first place'. The media is the one that ignores the first two parts and comes in later and wants to string up the person responsible for only the very last act in the chain of things that led to the situation. It isn't not Kelli's fault--it also isn't solely Kelli's fault. There is no one person we can pin all of this on and then feel safe because that one person will be locked up. Because of this idea that we need to blame one person, we can't cite Issy's behaviors as being involved in it at all, because then that's shifting the blame towards her. But it's not. It's just identifying the factors that needed better support beforehand. Because they will not be the only ones to ever to through this.
Re: 911, if the government has failed to help you care for your child at every other step along the way, why would you have any faith that in that particular circumstance the government would be able to care for your child when you came to the end of your rope?
posted by Sequence at 9:25 PM on September 7, 2013 [10 favorites]
Re: 911, if the government has failed to help you care for your child at every other step along the way, why would you have any faith that in that particular circumstance the government would be able to care for your child when you came to the end of your rope?
posted by Sequence at 9:25 PM on September 7, 2013 [10 favorites]
God. This poor family.
I honestly don't understand how anyone can truly condemn a mother who tries to kill herself and her own child. I've only been a mom for a few months now and I can't imagine where your head has to be to make that call. I was just thinking about this as I was putting my daughter to bed, about how I would jump in front of a moving train or take a bullet for her, and how most parents I've ever met feel the same. To deliberately harm her? That is a move of true, total, utter desperation or psychosis. I can't even imagine such depths. Suicide seems trivial and petty by comparison. I mean, we are entirely machines created by our genes to generate progeny that make it to reproductive age. To destroy that progeny violates every biological imperative we have.
I guess there are just a lot of people out there who can't imagine being in a mental place where the only next step is to destroy the things you care most about because you're that certain it'll never get better. I guess I'm glad that so many people lead such stable, sunny, unencumbered lives, but it seems like a real failure of imagination and empathy to me.
So I feel sorry for pretty much any mother who attempts to kill her kids, regardless of the circumstances. It'd be like ripping your still-beating heart out of your chest. I just can't see anyone making that decision without being in some kind of epic straits, be they mental, financial, or otherwise.
posted by town of cats at 9:37 PM on September 7, 2013 [18 favorites]
I honestly don't understand how anyone can truly condemn a mother who tries to kill herself and her own child. I've only been a mom for a few months now and I can't imagine where your head has to be to make that call. I was just thinking about this as I was putting my daughter to bed, about how I would jump in front of a moving train or take a bullet for her, and how most parents I've ever met feel the same. To deliberately harm her? That is a move of true, total, utter desperation or psychosis. I can't even imagine such depths. Suicide seems trivial and petty by comparison. I mean, we are entirely machines created by our genes to generate progeny that make it to reproductive age. To destroy that progeny violates every biological imperative we have.
I guess there are just a lot of people out there who can't imagine being in a mental place where the only next step is to destroy the things you care most about because you're that certain it'll never get better. I guess I'm glad that so many people lead such stable, sunny, unencumbered lives, but it seems like a real failure of imagination and empathy to me.
So I feel sorry for pretty much any mother who attempts to kill her kids, regardless of the circumstances. It'd be like ripping your still-beating heart out of your chest. I just can't see anyone making that decision without being in some kind of epic straits, be they mental, financial, or otherwise.
posted by town of cats at 9:37 PM on September 7, 2013 [18 favorites]
Other suicide/murderers are monsters; Kelli Stapleton gets sympathy. The reason for this is that Issy is autistic.
Just the opposite. In most circumstances, if a woman killed the person who'd beaten her into the hospital, she'd be regarded as entirely justified. It is because Issy is autistic that this is seen as morally complex.
posted by ThatFuzzyBastard at 9:37 PM on September 7, 2013 [27 favorites]
Just the opposite. In most circumstances, if a woman killed the person who'd beaten her into the hospital, she'd be regarded as entirely justified. It is because Issy is autistic that this is seen as morally complex.
posted by ThatFuzzyBastard at 9:37 PM on September 7, 2013 [27 favorites]
I am a disability rights activist, and I also am a diagnosed high-functioning autistic; while I've "out-grown" a lot of my autistic tendencies (i.e. over time developed intellectualized routines to act as the filters I do not naturally have), I used to be an extremely violent kid - I'd break a lot of furniture, lash out at my parents violently in ways that left visible scars, and my mother would be called to the principal's office in elementary school on a daily basis over biting/punching incidents. Once, I even broke an entire glass shower fixture by pulling on it in a rage - I still have some scars from where the glass splintered and fell on me. So while I certainly am more high-functioning than Issey, in a lot of ways, I still highly identify with her.
And yet, I have nothing but compassion for Kelli in this circumstance. The fault lies with the system, not with the parent; they are simultaneously subject to unrealistic expectations by portrayals of a saint and isolated from society by stigma; they struggle to be the best allies and advocates they can, tirelessly charging through every bureaucracy's red tape and constantly defending their children against relentless mockery and attacks - but constantly aware of the life that they sacrificed, unknowingly and due to random chance, and constantly holding back and feeling guilty of their internalized resentment out of overwhelming love; for every discriminatory word and action launched at their child - and there are countless attacks a day - they suffer twicefold, once for their child and once for themselves; and all the while ignoring the countless mental health issues that they amass as they roll down this hill of advocacy, because they just simply don't have the time or the energy to deal.
Do Issy and myself have the right to our own lives? Absolutely. But at the same time, if it were me and my mother in this situation, I could still not find the heart to fault her at all reflecting upon how life was like raising me. It wore down on her so much. She would break down every night crying hopelessly in the washroom, and then walk right out, pretending for my sake that nothing was wrong and ready to take on the entire world again for the next day. And I was far more high-functioning and far less violent still than Issy is; I can't imagine how much worse it is for Kelli.
So blame the system and blame the inherent difficulties in raising a violent autistic kid and the lack of support, but please don't fault our greatest and most incredible allies for their momentary, desperate lapses. I'm not condoning Kelli's decision to try to kill herself and her daughter; I think it's atrocious, but at the same time, I cannot ignore the context in which it has occurred in.
This honestly just breaks my heart.
posted by Conspire at 9:39 PM on September 7, 2013 [122 favorites]
And yet, I have nothing but compassion for Kelli in this circumstance. The fault lies with the system, not with the parent; they are simultaneously subject to unrealistic expectations by portrayals of a saint and isolated from society by stigma; they struggle to be the best allies and advocates they can, tirelessly charging through every bureaucracy's red tape and constantly defending their children against relentless mockery and attacks - but constantly aware of the life that they sacrificed, unknowingly and due to random chance, and constantly holding back and feeling guilty of their internalized resentment out of overwhelming love; for every discriminatory word and action launched at their child - and there are countless attacks a day - they suffer twicefold, once for their child and once for themselves; and all the while ignoring the countless mental health issues that they amass as they roll down this hill of advocacy, because they just simply don't have the time or the energy to deal.
Do Issy and myself have the right to our own lives? Absolutely. But at the same time, if it were me and my mother in this situation, I could still not find the heart to fault her at all reflecting upon how life was like raising me. It wore down on her so much. She would break down every night crying hopelessly in the washroom, and then walk right out, pretending for my sake that nothing was wrong and ready to take on the entire world again for the next day. And I was far more high-functioning and far less violent still than Issy is; I can't imagine how much worse it is for Kelli.
So blame the system and blame the inherent difficulties in raising a violent autistic kid and the lack of support, but please don't fault our greatest and most incredible allies for their momentary, desperate lapses. I'm not condoning Kelli's decision to try to kill herself and her daughter; I think it's atrocious, but at the same time, I cannot ignore the context in which it has occurred in.
This honestly just breaks my heart.
posted by Conspire at 9:39 PM on September 7, 2013 [122 favorites]
People keep saying the fault lies with the system, and given the end result it's hard to argue with that, but what precisely should the system have done here? I don't mean in generalities or platitudes, I mean what specifically should have happened?
posted by Justinian at 9:58 PM on September 7, 2013 [4 favorites]
posted by Justinian at 9:58 PM on September 7, 2013 [4 favorites]
Specifically, the system could have paid for the treatment the girl needed.
posted by bleep at 10:07 PM on September 7, 2013 [4 favorites]
posted by bleep at 10:07 PM on September 7, 2013 [4 favorites]
Societies are supposed to help each other. Our society abandoned this family and others like it.
posted by bleep at 10:13 PM on September 7, 2013 [5 favorites]
posted by bleep at 10:13 PM on September 7, 2013 [5 favorites]
Specifically, the system could have paid for the treatment the girl needed.
In general, I agree. But in this case, the family seems to have tried a wide range of treatments and approaches, with very limited success. There are difficult cases that simply do not respond to pharmacological treatment, and these cases are not uncommon in the population. If more comprehensive treatment had been made available to the family, some of the crushing pressure would have been lifted from them. But I think it's naive to think that even 24/7 support would have put Issy on the road to improvement. In cases like hers, treatment and support involve constant monitoring, physical coercion, immobilization, and "training in independent living skills" that is, to be honest, not dissimilar from obedience training for animals. In difficult cases that don't improve sufficiently with medication, even the best we have to offer is not necessarily very pleasant or humane or unproblematic. That's the tragedy of living with a severe developmental disability.
posted by Nomyte at 10:39 PM on September 7, 2013 [10 favorites]
In general, I agree. But in this case, the family seems to have tried a wide range of treatments and approaches, with very limited success. There are difficult cases that simply do not respond to pharmacological treatment, and these cases are not uncommon in the population. If more comprehensive treatment had been made available to the family, some of the crushing pressure would have been lifted from them. But I think it's naive to think that even 24/7 support would have put Issy on the road to improvement. In cases like hers, treatment and support involve constant monitoring, physical coercion, immobilization, and "training in independent living skills" that is, to be honest, not dissimilar from obedience training for animals. In difficult cases that don't improve sufficiently with medication, even the best we have to offer is not necessarily very pleasant or humane or unproblematic. That's the tragedy of living with a severe developmental disability.
posted by Nomyte at 10:39 PM on September 7, 2013 [10 favorites]
People tend to have this reaction when faced with horrible tragedy where they look for something or someone to blame, something to other from themselves, as a means of explanation for events that lack clear explanations, and to gain a sense of assurance about themselves. Surely I would never do such a thing. If only the mother had done x. If only society (whatever that really even means here) had done y. But the truth is there is no blame here. This was not some insidious plot to murder a child. It makes no sense to try to "understand" such a situation through one's own comparatively mentally healthy lens where there is some bright line between good and so-called evil. "It is always wrong to murder a child" is an easy enough categorical imperative-type maxim to toss around. And surely no rational, mentally healthy person would disagree. But that's really the rub, right? We don't blame Issy for violently attacking her mother - because we don't judge her by the same rules of agency we would a neuro-typical person. And we can't judge Kelli by the same rules of agency either.
Because after years of enduring what must have been insanely heightened cortisol levels, of developing a severely overworked amygdala from living in some continual level of fear, from what could only be a very exhausted attention network from so much vigilance, to say nothing of just being fucking tired all the time - to all sorts of other neurological maladies - there is no possible way Kelli's brain was functioning in a manner that could be considered healthy enough to be submitted to the normal ways of placing blame and praise.
Lots of people here talking about what Kelli "chose" to do. But choice isn't so fucking simple is it? What seems right or wrong in any given situation to any given person's mind. It's easy from the outside to wonder why anyone could attempt such a horrible thing. Who could have sympathy or hell, even empathy, for someone who tried to murder a child and herself? Why didn't she just do x? But that is a primitive way of thinking about choices and morals and the chaos of things.
There is no blame here. Not even for society. Sure, did services fail them both at times? Absolutely. But who is to say whether this was the type of situation that enough time and money could have bettered in any real sense. Good faith efforts were no doubt made. This is not the era of ghost ships. Sometimes things are just fucked up and there are no fingers to point.
All I feel is sadness for everyone involved, relief they survived, and a guilt-laden pit in my stomach that's thankful that I have not yet been faced with such a degree of trying circumstance.
posted by Lutoslawski at 10:46 PM on September 7, 2013 [21 favorites]
Because after years of enduring what must have been insanely heightened cortisol levels, of developing a severely overworked amygdala from living in some continual level of fear, from what could only be a very exhausted attention network from so much vigilance, to say nothing of just being fucking tired all the time - to all sorts of other neurological maladies - there is no possible way Kelli's brain was functioning in a manner that could be considered healthy enough to be submitted to the normal ways of placing blame and praise.
Lots of people here talking about what Kelli "chose" to do. But choice isn't so fucking simple is it? What seems right or wrong in any given situation to any given person's mind. It's easy from the outside to wonder why anyone could attempt such a horrible thing. Who could have sympathy or hell, even empathy, for someone who tried to murder a child and herself? Why didn't she just do x? But that is a primitive way of thinking about choices and morals and the chaos of things.
There is no blame here. Not even for society. Sure, did services fail them both at times? Absolutely. But who is to say whether this was the type of situation that enough time and money could have bettered in any real sense. Good faith efforts were no doubt made. This is not the era of ghost ships. Sometimes things are just fucked up and there are no fingers to point.
All I feel is sadness for everyone involved, relief they survived, and a guilt-laden pit in my stomach that's thankful that I have not yet been faced with such a degree of trying circumstance.
posted by Lutoslawski at 10:46 PM on September 7, 2013 [21 favorites]
Whatever treatment was necessary or possible, it wasn't available for them. The article said the latest thing they tried was promising but too expensive.
posted by bleep at 11:02 PM on September 7, 2013 [2 favorites]
posted by bleep at 11:02 PM on September 7, 2013 [2 favorites]
I mean what specifically should have happened?
For starters, the teacher should have agreed to use the behavior plan as it was written instead of throwing a tantrum and having Issy removed from the school.
I am a professional behaviorist who works with children who have autism. The teacher's behavior in this situation appalls me. There was a protocol in place that was reducing Issy's aggression? And this teacher couldn't give a little and work with it as it was written? I realize that I'm accustomed to working with teachers who bend over backwards for their students, but refusing to implement an effective behavior strategy because it doesn't fit with your classroom routine is beyond the pale.
This is not to say that the teacher is responsible for Kelli's attempted murder/suicide, because she isn't. If the parents I work with are any indication, a terrible constellation of factors is at work to drive them to the brink of sanity and the straw that breaks the camel's back is but a tiny one. I have to wonder if Kelli's reasoning, such as it was, might have been that if she and Issy didn't die in the van, maybe someone would see just how desperate their situation had become and would help.
My heart aches for this entire family.
posted by corey flood at 11:48 PM on September 7, 2013 [12 favorites]
For starters, the teacher should have agreed to use the behavior plan as it was written instead of throwing a tantrum and having Issy removed from the school.
I am a professional behaviorist who works with children who have autism. The teacher's behavior in this situation appalls me. There was a protocol in place that was reducing Issy's aggression? And this teacher couldn't give a little and work with it as it was written? I realize that I'm accustomed to working with teachers who bend over backwards for their students, but refusing to implement an effective behavior strategy because it doesn't fit with your classroom routine is beyond the pale.
This is not to say that the teacher is responsible for Kelli's attempted murder/suicide, because she isn't. If the parents I work with are any indication, a terrible constellation of factors is at work to drive them to the brink of sanity and the straw that breaks the camel's back is but a tiny one. I have to wonder if Kelli's reasoning, such as it was, might have been that if she and Issy didn't die in the van, maybe someone would see just how desperate their situation had become and would help.
My heart aches for this entire family.
posted by corey flood at 11:48 PM on September 7, 2013 [12 favorites]
I have thought about this fall day. i keep thinking, of all the times i could not get support, that i could not afford it, that the support was wrong, that it pushed against me, of all of the things that just fucked up, i can give you 32 years of lists...and how much of a pain in the ass, how exhausting it is for the people i love to handle my spectrum, and how willing they are--to go to meetings, to doctors appointments, to write letters, to listen to me, to work with me--and i'm not dumb and my language skills are good. i dont know what would happen if those failed to succeed.
posted by PinkMoose at 11:55 PM on September 7, 2013 [3 favorites]
posted by PinkMoose at 11:55 PM on September 7, 2013 [3 favorites]
What would it look like, for a society to *not* fail a girl like Issy? Judging from the blog and the videos posted on it, her behavior is erratic and extremely dangerous. If that behavior is truly intractable, what place can she ever have in society? She *should* have a place in society; she's a human being. She's worth trying to find a place for. But what can society do with someone that isn't safe for anyone to be around, whose behavior is fundamentally anti-social? If ours were a perfect society, what would her life look like?
Is an institution the only answer? And is there even funding for institutionalization? What will happen to Issy now?
I feel terrible for the whole family, including both Issy and Kelli. Things only look bleaker now.
posted by rue72 at 12:28 AM on September 8, 2013 [5 favorites]
Is an institution the only answer? And is there even funding for institutionalization? What will happen to Issy now?
I feel terrible for the whole family, including both Issy and Kelli. Things only look bleaker now.
posted by rue72 at 12:28 AM on September 8, 2013 [5 favorites]
I read the links in this FPP and all of the comments in this thread with my son, who has autism, asleep next to me on the couch. I don't mention this to prove "and therefore my opinions on anything related to autism are therefore much more valid than yours", just to provide context.
I suppose we are "lucky" in that my son is relatively high-functioning. But I can personally identify with the despair of knowing your child will never be fully independent. Whenever I feel like I haven't had a good panic attack in awhile, I stop to think about what will happen to my son after my wife and I pass. I have my own horror stories about getting lost in the Bermuda Triangle of trying to obtain services for my son, bad experiences with medical professionals and school personnel who don't always seem to have his best interests at heart and even occasionally appear to view special needs kids as a burden to be barely tolerated.
I can't say that my experience bears any resemblance to Kelli's. My son has occasional issues with temper tantrums which are difficult to diffuse (and really embarrassing when they happen in public), but he's never become physically violent. He's only 9, so perhaps the worst is yet to come, but generally being his dad is a lot of fun.
Still, my experience in raising an autistic child gives me great empathy for others going through the same challenge, particularly those who are in situations much more difficult than mine, such as Kelli. I can empathize with the feeling of being absolutely at the end of your rope and feeling hopeless that your situation will ever improve. That Kelli reached the point where taking her own life seemed like the only logical solution for her is tragic, but sadly understandable given the impossible situation she found herself in. What I'm having a more difficult time empathizing with is her decision that her daughter should join her in death.
posted by The Gooch at 12:32 AM on September 8, 2013 [3 favorites]
I suppose we are "lucky" in that my son is relatively high-functioning. But I can personally identify with the despair of knowing your child will never be fully independent. Whenever I feel like I haven't had a good panic attack in awhile, I stop to think about what will happen to my son after my wife and I pass. I have my own horror stories about getting lost in the Bermuda Triangle of trying to obtain services for my son, bad experiences with medical professionals and school personnel who don't always seem to have his best interests at heart and even occasionally appear to view special needs kids as a burden to be barely tolerated.
I can't say that my experience bears any resemblance to Kelli's. My son has occasional issues with temper tantrums which are difficult to diffuse (and really embarrassing when they happen in public), but he's never become physically violent. He's only 9, so perhaps the worst is yet to come, but generally being his dad is a lot of fun.
Still, my experience in raising an autistic child gives me great empathy for others going through the same challenge, particularly those who are in situations much more difficult than mine, such as Kelli. I can empathize with the feeling of being absolutely at the end of your rope and feeling hopeless that your situation will ever improve. That Kelli reached the point where taking her own life seemed like the only logical solution for her is tragic, but sadly understandable given the impossible situation she found herself in. What I'm having a more difficult time empathizing with is her decision that her daughter should join her in death.
posted by The Gooch at 12:32 AM on September 8, 2013 [3 favorites]
The thing that sticks with me is that, in the newspaper profile, mention is made that Issy, when frustrated, would intentionally seek out her younger sister to batter, even though the younger sister would have no part in the situation that caused Issy frustration.
The explanation for this (as given by Issy's parents) was that the sister was smaller and weaker and therefore more prey-like.
I was an abused child, raised by an erratic and mentally ill set of parents. I know the horror of living with someone who could really hurt you at any time. I empathize with Kelli on that point, I do, but I know from experience that it's something that can be coped with.
I cannot, for the life of me, imagine how I could cope with one of my children attacking the other, smaller child.
There is simply no way that I could live with that. If I had a child who was the size of an adult and displayed that level of aggression and violence toward another of my children, I could not live in that situation. I could not do it. I have no idea what measures I would resort to in order to keep my "prey" children safe, but I have no doubt that they would be extreme.
My heart just breaks.
posted by Athene at 1:27 AM on September 8, 2013 [22 favorites]
The explanation for this (as given by Issy's parents) was that the sister was smaller and weaker and therefore more prey-like.
I was an abused child, raised by an erratic and mentally ill set of parents. I know the horror of living with someone who could really hurt you at any time. I empathize with Kelli on that point, I do, but I know from experience that it's something that can be coped with.
I cannot, for the life of me, imagine how I could cope with one of my children attacking the other, smaller child.
There is simply no way that I could live with that. If I had a child who was the size of an adult and displayed that level of aggression and violence toward another of my children, I could not live in that situation. I could not do it. I have no idea what measures I would resort to in order to keep my "prey" children safe, but I have no doubt that they would be extreme.
My heart just breaks.
posted by Athene at 1:27 AM on September 8, 2013 [22 favorites]
If that behavior is truly intractable, what place can she ever have in society? She *should* have a place in society; she's a human being. She's worth trying to find a place for. But what can society do with someone that isn't safe for anyone to be around, whose behavior is fundamentally anti-social? If ours were a perfect society, what would her life look like?
I guess that's sort of what I was getting at with my question. Even in a supposed best case scenario is what we end up with here a girl institutionalized for life? That's infinitely better than what happened but I just don't see how this story ever has a happy ending in a case of intractable danger.
posted by Justinian at 1:36 AM on September 8, 2013 [6 favorites]
I guess that's sort of what I was getting at with my question. Even in a supposed best case scenario is what we end up with here a girl institutionalized for life? That's infinitely better than what happened but I just don't see how this story ever has a happy ending in a case of intractable danger.
posted by Justinian at 1:36 AM on September 8, 2013 [6 favorites]
The question is 'what went wrong and how do we stop it happening again', not 'who do we blame and who do we champion'.
posted by Segundus at 1:36 AM on September 8, 2013 [8 favorites]
posted by Segundus at 1:36 AM on September 8, 2013 [8 favorites]
Here's another, wretchedly sad dimension:
Kelli mentions, in a post about a battering that sent her to the hospital, that she is "(T)ired of dying slowly with each traumatic brain injury."
Traumatic brain injury is frequently associated with depression (1) (2), aggression, and suicidality.
If this was happening to Kelli, then it's possible that each time Issey had a violent episode that involved inflicting a serious head injury, Kelli was being organically deprived of just a little bit more of her ability to deal rationally with what was happening.
This is all just a big pile of horrible.
posted by palmcorder_yajna at 2:01 AM on September 8, 2013 [29 favorites]
Kelli mentions, in a post about a battering that sent her to the hospital, that she is "(T)ired of dying slowly with each traumatic brain injury."
Traumatic brain injury is frequently associated with depression (1) (2), aggression, and suicidality.
If this was happening to Kelli, then it's possible that each time Issey had a violent episode that involved inflicting a serious head injury, Kelli was being organically deprived of just a little bit more of her ability to deal rationally with what was happening.
This is all just a big pile of horrible.
posted by palmcorder_yajna at 2:01 AM on September 8, 2013 [29 favorites]
The teacher's behavior in this situation appalls me.
We don't know enough about the situation to judge the teacher. Is this the behaviour plan that requires setting a timer every 10 minutes and giving Issy a token and some reinforcement? It isn't clear to me how much involvement the teacher would have had in the plan, but she was probably weighing the extra disruption and workload against the needs of her other students.
She also had every right to remove the principal from the decision-making process, because he is Issy's father.
posted by Pruitt-Igoe at 2:23 AM on September 8, 2013 [4 favorites]
We don't know enough about the situation to judge the teacher. Is this the behaviour plan that requires setting a timer every 10 minutes and giving Issy a token and some reinforcement? It isn't clear to me how much involvement the teacher would have had in the plan, but she was probably weighing the extra disruption and workload against the needs of her other students.
She also had every right to remove the principal from the decision-making process, because he is Issy's father.
posted by Pruitt-Igoe at 2:23 AM on September 8, 2013 [4 favorites]
Oh, I've been watching my friend with two autistic kids try to get her school district to implement their own service plans for YEARS now, and it is always a fight. Always.
That school district has spent more money on the lawyers they have to hire every time they get called out for noncompliance -- so much money that it would have been cheaper to implement the damn plan and hire about 10 extra workers per kid. It makes no sense at all.
The only way it makes sense is if they're doing it out of spite. (Which depresses the hell out of me but watching her go through these fights again and again, it's the only thing that makes any sense).
So for me, that teacher's refusal is a particularly trigger-y thing. It reminds me of watching my friend and her kids suffer needlessly because the district would rather fight than adhere to the lowest possible standards. I can't even begin to imagine the fighting this family has had to do in order to secure appropriate care, and just when things are looking up, the teacher does what now? I have a lot of respect for teachers in general but I am having a tough time feeling it here.
posted by bitter-girl.com at 4:13 AM on September 8, 2013 [5 favorites]
That school district has spent more money on the lawyers they have to hire every time they get called out for noncompliance -- so much money that it would have been cheaper to implement the damn plan and hire about 10 extra workers per kid. It makes no sense at all.
The only way it makes sense is if they're doing it out of spite. (Which depresses the hell out of me but watching her go through these fights again and again, it's the only thing that makes any sense).
So for me, that teacher's refusal is a particularly trigger-y thing. It reminds me of watching my friend and her kids suffer needlessly because the district would rather fight than adhere to the lowest possible standards. I can't even begin to imagine the fighting this family has had to do in order to secure appropriate care, and just when things are looking up, the teacher does what now? I have a lot of respect for teachers in general but I am having a tough time feeling it here.
posted by bitter-girl.com at 4:13 AM on September 8, 2013 [5 favorites]
She CHOSE not to call 911, and she CHOSE to kill her child. My compassion for her would have began the moment she found out that she was going to have a tough time raising this child. My compassion died after she finished blogging and started planning the murder of her child.
That's not how depression works. Your brain literally disguises your options from you. You can sit here right now, and know the sky is blue, right? But I look outside and it's milky gray. You can insist to me as a rational person all you like that the sky is blue, but all I see is gray. It will always be gray. Until it becomes black, because there's a thunderstom that I know is coming, and the lightning will strike my house and burn it the ground with me in it, and it will be a relief because then the pain will be over...
Depression not only screws up your ability to think rationally, it hides itself from you that it's even doing so. Your brain changes its assumptions, its basis for logic, you literally lose your ability to reason properly because all your predictions about what might happen are flawed. Things that seem trivial from the outside become massive obstacles on the inside. There are no good choices, only bouncing near uncontrollably between bad ones. It will all end terribly, no matter what you do, and your fate is not in your own hands. Information and facts and the future are warped and twisted from how a non depressed view would see them. And when you're depressed, you CAN'T see that. That warped reality is all you know, and from the inside, it IS reality. It can seem that the only real choice you have, the ONLY decision that rests in your hands, is to end it all, to seek the only peace you can see in the end.
Of course Issy didn't deserve to die. And I feel huge empathy for her, for what must be a horrible situation where her own mother tried to kill her.
But we don't blame Issy for CHOOSING to attack her family, for CHOOSING her actions caused by her autism. She's mentally ill, and irrational actions (from our perspective) are a result of that illness. We don't blame her for that, we are supposed to care for her, and as a society, we failed her in that, just as we've failed many other families.
It's not saying that it's ok to murder your autistic child when we accept that Kelli was probably severely depressed, and her choices were not choices at all, but come from the warped perspective of being mentally ill too, and have sympathy for all involved.
posted by ArkhanJG at 4:26 AM on September 8, 2013 [30 favorites]
That's not how depression works. Your brain literally disguises your options from you. You can sit here right now, and know the sky is blue, right? But I look outside and it's milky gray. You can insist to me as a rational person all you like that the sky is blue, but all I see is gray. It will always be gray. Until it becomes black, because there's a thunderstom that I know is coming, and the lightning will strike my house and burn it the ground with me in it, and it will be a relief because then the pain will be over...
Depression not only screws up your ability to think rationally, it hides itself from you that it's even doing so. Your brain changes its assumptions, its basis for logic, you literally lose your ability to reason properly because all your predictions about what might happen are flawed. Things that seem trivial from the outside become massive obstacles on the inside. There are no good choices, only bouncing near uncontrollably between bad ones. It will all end terribly, no matter what you do, and your fate is not in your own hands. Information and facts and the future are warped and twisted from how a non depressed view would see them. And when you're depressed, you CAN'T see that. That warped reality is all you know, and from the inside, it IS reality. It can seem that the only real choice you have, the ONLY decision that rests in your hands, is to end it all, to seek the only peace you can see in the end.
Of course Issy didn't deserve to die. And I feel huge empathy for her, for what must be a horrible situation where her own mother tried to kill her.
But we don't blame Issy for CHOOSING to attack her family, for CHOOSING her actions caused by her autism. She's mentally ill, and irrational actions (from our perspective) are a result of that illness. We don't blame her for that, we are supposed to care for her, and as a society, we failed her in that, just as we've failed many other families.
It's not saying that it's ok to murder your autistic child when we accept that Kelli was probably severely depressed, and her choices were not choices at all, but come from the warped perspective of being mentally ill too, and have sympathy for all involved.
posted by ArkhanJG at 4:26 AM on September 8, 2013 [30 favorites]
From reading the earlier blog posts, it sounds like the treatment center where Issy had spent the past 6 months was working well for her. Her acts of aggression had gone way down and she seemed to like and accept the behavior plan. However, she seemed to do worse when her family visited her there. As far as I can see, finding a way to keep Issy at that place for as long as it continued to work, possibly the rest of her life, might/may be the best solution. Yes, it's "institutionalization", but Issy seemed happy and healthy there, which I think matters more than the word. Sending her home because there was no more money to pay for the treatment center seems to have been the instigating event here. So, yes, in this case it really does appear that the system failed and that the solution was/is for the state/insurance company to continue to pay for Issy to be at that treatment center for as long as it continued to work.
posted by hydropsyche at 5:00 AM on September 8, 2013 [7 favorites]
posted by hydropsyche at 5:00 AM on September 8, 2013 [7 favorites]
The reason this story is as hunting to me as it is is that I suspect, very strongly, that my response to this situation would have been as bad as Kelli's was. Or I'd have been the husband who walked out within months of the diagnosis.
What a horrible situation to find yourself in. Worse for Issy, but still horrible for Kelli and her husband. I'm very sorry if that is insensitive to people who have to deal with situations like that—I don't intend that as any sort of judgment or condemnation or excuse, just as my gut response to the story that unfolded here.
I could not handle what Kelli has gone through without snapping. I'm certain of that.
posted by Rory Marinich at 5:40 AM on September 8, 2013 [4 favorites]
What a horrible situation to find yourself in. Worse for Issy, but still horrible for Kelli and her husband. I'm very sorry if that is insensitive to people who have to deal with situations like that—I don't intend that as any sort of judgment or condemnation or excuse, just as my gut response to the story that unfolded here.
I could not handle what Kelli has gone through without snapping. I'm certain of that.
posted by Rory Marinich at 5:40 AM on September 8, 2013 [4 favorites]
What I don't understand is all the focus on autism in this thread. The issue isn't Issy's autism - it's the sudden violent outbursts that occur multiple times daily and have put members of her family in the hospital multiple times.
In fact, I'm wondering if the cause of the violent outbursts is even autism based. Just reading a basic description makes me wonder if Issy is suffering from epileptic episodes that manifest in violent outbursts. Perhaps, instead of behavioral therapy, anti-epileptic drugs may be the best choice for treatment?
posted by enamon at 6:17 AM on September 8, 2013
In fact, I'm wondering if the cause of the violent outbursts is even autism based. Just reading a basic description makes me wonder if Issy is suffering from epileptic episodes that manifest in violent outbursts. Perhaps, instead of behavioral therapy, anti-epileptic drugs may be the best choice for treatment?
posted by enamon at 6:17 AM on September 8, 2013
it would be weird, i think, that after all the doctors and specialists and treatments and work the family and other caretakers have done that they all missed a diagnosis of epilepsy. it seems far more likely that the people intimately involved have a better handle on what is going on with issy than you can get after a quick google and reading a basic description.
posted by nadawi at 6:56 AM on September 8, 2013 [17 favorites]
posted by nadawi at 6:56 AM on September 8, 2013 [17 favorites]
I have so many friends who are in Kelli's situation, and even if we are in a socialist paradise, they still have to spend all their time fighting authorities to get the help they really desperately need, as well as the correct treatment for their children (and adult siblings, as it is).
All over the western world, spending on mental health issues has gone down dramatically. THis is dangerous for everyone. Some of the people who should be in treatment are out there killing people. Earlier this year, I visited a pensioned head of psychiatry for professional reasons, and she told me that every single murder in her former district (not where I live) was foreseeable as a consequence of not treating mentally ill people appropriately.
In my job, I meet a lot of mentally ill students, and learn a lot. But it is thought-provoking that my students with physical handicaps receive every possible aid available, including installation of elevators, new furniture, 24/7 minders and waivers for a number of mandatory courses, while my mentally disabled students, who are often very fragile, have to fight for every ounce of aid.
Since I do what I can to help my students (including help they don't always appreciate), I've seen how the social workers dealing with their "cases" are often horribly inept and under-educated. A lot of people still won't acknowledge mental illness, and literally suggest that the person should pull them self together.
posted by mumimor at 7:07 AM on September 8, 2013 [5 favorites]
All over the western world, spending on mental health issues has gone down dramatically. THis is dangerous for everyone. Some of the people who should be in treatment are out there killing people. Earlier this year, I visited a pensioned head of psychiatry for professional reasons, and she told me that every single murder in her former district (not where I live) was foreseeable as a consequence of not treating mentally ill people appropriately.
In my job, I meet a lot of mentally ill students, and learn a lot. But it is thought-provoking that my students with physical handicaps receive every possible aid available, including installation of elevators, new furniture, 24/7 minders and waivers for a number of mandatory courses, while my mentally disabled students, who are often very fragile, have to fight for every ounce of aid.
Since I do what I can to help my students (including help they don't always appreciate), I've seen how the social workers dealing with their "cases" are often horribly inept and under-educated. A lot of people still won't acknowledge mental illness, and literally suggest that the person should pull them self together.
posted by mumimor at 7:07 AM on September 8, 2013 [5 favorites]
What I don't understand is all the focus on autism in this thread. The issue isn't Issy's autism - it's the sudden violent outbursts that occur multiple times daily and have put members of her family in the hospital multiple times.
Because the sudden violent outbursts are, in Issy's case, part of her autism?
posted by Salamander at 7:20 AM on September 8, 2013 [4 favorites]
Because the sudden violent outbursts are, in Issy's case, part of her autism?
posted by Salamander at 7:20 AM on September 8, 2013 [4 favorites]
Please point me to anybody saying that murder-suicide was the rational thing to do
No one is literally saying that it's rational, but I do think that a lot of the undertones of this discussion involve the fact that most people can empathize with the mother's depression. Anyone can be depressed to the point that they consider taking their own life no matter what their personal circumstances are, but other people tend to either blame the depressed person for making a bad choice if they have a seemingly normal life or blame their circumstances if they have a more tragic life. So that's why it feels to me that many people in this thread are having a much easier time understanding why someone might do something wrong and irrational even though they are not an evil person, when the same commenters wouldn't necessarily have the same reaction if it had been a seemingly normal mother who didn't have any obvious reason to be depressed.
posted by burnmp3s at 7:38 AM on September 8, 2013
No one is literally saying that it's rational, but I do think that a lot of the undertones of this discussion involve the fact that most people can empathize with the mother's depression. Anyone can be depressed to the point that they consider taking their own life no matter what their personal circumstances are, but other people tend to either blame the depressed person for making a bad choice if they have a seemingly normal life or blame their circumstances if they have a more tragic life. So that's why it feels to me that many people in this thread are having a much easier time understanding why someone might do something wrong and irrational even though they are not an evil person, when the same commenters wouldn't necessarily have the same reaction if it had been a seemingly normal mother who didn't have any obvious reason to be depressed.
posted by burnmp3s at 7:38 AM on September 8, 2013
As the parent of an autistic child, there's a couple points I'd like to share here:
First, no, not all autistic people are violent, but Issy's violence clearly stems from her spectrum disorder. Trying to separate the violence from her disorder is a bit dangerous, and this makes her just a "violent teenager who hospitalized her mom many times" - like this is some kind of choice on her part - as opposed to a child struggling with a severe cognitive impairment. It separates the behavior from the cause.
Second, some (though not at all all!) of the sympathy for the mother, I think, extends from this idea that the disabled are a "burden" to their families. I mean really early in this thread, we have someone declare that there is "absolutely nothing" good about raising someone with a severe disability, and that believing yourself "blessed" to have such a child is a form of "delusion". I think this point of view is frankly sickening.
Third, as someone who has worked with the severely disabled and have had my own struggles with my child, yes, it can be an incredibly exhausting experience that can test the limits of your patience and sanity. As I see it, yeah, the system let down the mother and the daughter alike. The lack of resources wedged them into a seemingly hopeless situation. But for whatever reason I can't bring myself to be fully sympathetic with the mother here. Maybe because I have a child myself, maybe because I would sooner take my own life if I found myself incapable rather than harm a hair on her head, or maybe simply because I am greatly privileged to live in a country where we have had all the resources we could ask for made readily and affordably available to us. So I recognize it's easy for me to say.
But there's just some actions I can't see past, things I find utterly inexcusable, even if it gives me the horrors to imagine being in this mother's situation, and I find myself without any practical solution I could offer that doesn't involve a giant pile of money appearing magically from the sky. The whole thing is sad and sick, and it makes me wonder what kind of society is being encouraged when we allow families to even reach this point of desperation.
posted by Marisa Stole the Precious Thing at 8:21 AM on September 8, 2013 [10 favorites]
First, no, not all autistic people are violent, but Issy's violence clearly stems from her spectrum disorder. Trying to separate the violence from her disorder is a bit dangerous, and this makes her just a "violent teenager who hospitalized her mom many times" - like this is some kind of choice on her part - as opposed to a child struggling with a severe cognitive impairment. It separates the behavior from the cause.
Second, some (though not at all all!) of the sympathy for the mother, I think, extends from this idea that the disabled are a "burden" to their families. I mean really early in this thread, we have someone declare that there is "absolutely nothing" good about raising someone with a severe disability, and that believing yourself "blessed" to have such a child is a form of "delusion". I think this point of view is frankly sickening.
Third, as someone who has worked with the severely disabled and have had my own struggles with my child, yes, it can be an incredibly exhausting experience that can test the limits of your patience and sanity. As I see it, yeah, the system let down the mother and the daughter alike. The lack of resources wedged them into a seemingly hopeless situation. But for whatever reason I can't bring myself to be fully sympathetic with the mother here. Maybe because I have a child myself, maybe because I would sooner take my own life if I found myself incapable rather than harm a hair on her head, or maybe simply because I am greatly privileged to live in a country where we have had all the resources we could ask for made readily and affordably available to us. So I recognize it's easy for me to say.
But there's just some actions I can't see past, things I find utterly inexcusable, even if it gives me the horrors to imagine being in this mother's situation, and I find myself without any practical solution I could offer that doesn't involve a giant pile of money appearing magically from the sky. The whole thing is sad and sick, and it makes me wonder what kind of society is being encouraged when we allow families to even reach this point of desperation.
posted by Marisa Stole the Precious Thing at 8:21 AM on September 8, 2013 [10 favorites]
A high school friend of mine has a son with severe Tourette's, that includes a "rage tic" that leads him to lash out at his family. He only hits his family, never anyone else. So, for instance, when he spent a week at camp, he was free from the burden of knowing he was hurting his family, and they were free from being hurt. At the same time, he describes his biggest fear as being separated from his family. A short film was made about him and other kids at Camp Twitch & Shout, a camp for kids with Tourette's, and it's very well done. I'd have made a post of it except that I know one of the people in the film.
Anyway, I think it's a great example of the terrible dilemma families face when they have kids who are violent, for whatever reason. Here you have a child who is violent enough that he knocks holes in the walls of the house and once broke his sister's wrist, but he is completely blameless because he is under the grip of a compulsion. He feels terrible remorse about hurting his family. His family wants him to stay with them, and he wants to stay, but life is not very liveable at home, and in some ways the child does better when away from home. His sibling is not safe with him in the house. How do you navigate that? What is the right answer?
I feel so sad for this family. I have friends who live with young adult children who cannot ever be left alone, who have aged out of publicly-funded respite care programs. The pressure on them is relentless. I once dropped in on such a friend unexpectedly when I was in her neighborhood, and caught her in the middle of a major meltdown, just sitting at her table weeping. Another friend--who fortunately has terrific friends who like her children and have really hung in with her--has more than once been in such bad shape that her friends have taken initiative, divvied up her kids, and found babysitters for each other so people could be with her. If she weren't so gifted at maintaining friendships, or hadn't found a community of other parents with children with serious challenges of various kinds, she'd be all alone with this. What then?
Who mentioned up-thread thinking of what happens to their child after they die? I've seen this happen in my family, when my grandmother died, leaving my uncle who had lived with her and depended on her his whole life. His quality of life plummeted. It was heart-breaking, and honestly, it makes me feel ambivalent when I hear about advances in life expectancy for people with certain conditions. When I was a young adult, my uncle's life expectancy was said to be about 40 or 45. In the event, he lived into his 60s, and I'm not at all sure that was a good thing. One thing that made my uncle's life after my grandma died so difficult was that she had not had the heart to put him in any kind of assisted-living facility, and when there was nobody who could take him into their homes, and he acted out so badly when his siblings tried a not-very-restrictive group living situation that he had to be removed. There were no good options for him at that point. This is what my friends worry about, too: who will take care of their children when they aren't around anymore?
It's a tangled mess, and I can't bring myself to have anything but sympathy for that whole family.
posted by not that girl at 8:36 AM on September 8, 2013 [7 favorites]
Anyway, I think it's a great example of the terrible dilemma families face when they have kids who are violent, for whatever reason. Here you have a child who is violent enough that he knocks holes in the walls of the house and once broke his sister's wrist, but he is completely blameless because he is under the grip of a compulsion. He feels terrible remorse about hurting his family. His family wants him to stay with them, and he wants to stay, but life is not very liveable at home, and in some ways the child does better when away from home. His sibling is not safe with him in the house. How do you navigate that? What is the right answer?
I feel so sad for this family. I have friends who live with young adult children who cannot ever be left alone, who have aged out of publicly-funded respite care programs. The pressure on them is relentless. I once dropped in on such a friend unexpectedly when I was in her neighborhood, and caught her in the middle of a major meltdown, just sitting at her table weeping. Another friend--who fortunately has terrific friends who like her children and have really hung in with her--has more than once been in such bad shape that her friends have taken initiative, divvied up her kids, and found babysitters for each other so people could be with her. If she weren't so gifted at maintaining friendships, or hadn't found a community of other parents with children with serious challenges of various kinds, she'd be all alone with this. What then?
Who mentioned up-thread thinking of what happens to their child after they die? I've seen this happen in my family, when my grandmother died, leaving my uncle who had lived with her and depended on her his whole life. His quality of life plummeted. It was heart-breaking, and honestly, it makes me feel ambivalent when I hear about advances in life expectancy for people with certain conditions. When I was a young adult, my uncle's life expectancy was said to be about 40 or 45. In the event, he lived into his 60s, and I'm not at all sure that was a good thing. One thing that made my uncle's life after my grandma died so difficult was that she had not had the heart to put him in any kind of assisted-living facility, and when there was nobody who could take him into their homes, and he acted out so badly when his siblings tried a not-very-restrictive group living situation that he had to be removed. There were no good options for him at that point. This is what my friends worry about, too: who will take care of their children when they aren't around anymore?
It's a tangled mess, and I can't bring myself to have anything but sympathy for that whole family.
posted by not that girl at 8:36 AM on September 8, 2013 [7 favorites]
I have what I think is a relatively uncommon perspective on the burden of raising a disabled child. I reside somewhere on the Autism spectrum, albeit with a case mild enough (even by the lowered standards of what they call/called Asperger's) that no formal diagnosis was made until I was about twenty-five years old, after I learned of my older brother's engagement.
My older brother was the second (and last, thus far) of my three siblings to marry. My younger brother was on pace to graduate college perhaps a year after the wedding, leaving me the only one of four children with neither a college degree nor any romantic prospects. These facts gave me cause to abandon a competing explanation for my behavioral quirks (my parents' marriage was fucked up in several respects, and I bore the brunt of it during my childhood) and visit a psychiatrist for a formal diagnosis.
My parents kept an inches-thick file on each of their children, and I recently had the opportunity to leaf through mine while searching for my high school diploma. While I did so, I discovered the frequent correspondence home from my early childhood teachers documenting my antisocial and asocial behavior and inability to cope with transitions. I remembered some of the circumstances discussed, but others were new to me, and for the first time I was able to see them in context.
Seeing the early manifestations of my current condition so clearly laid out was shocking. My behavior was so obviously pathological that I couldn't understand why I hadn't been swiftly referred for psychiatric evaluation as a child. My own theory is that my father resisted any attempt to label me because he was afraid it might impact my future prospects. He denies this, but I've found his memory of the past is compromised. Either way, it's entirely possible that the immersion in normal classroom structure that resulted helped me far more than the treatment protocols that existed for Aspergers back in the late 80's and 90's would have.
...and I've just written four paragraphs of extraneous text while dancing around my point.
My home life was obviously less well-documented than at school, but considering the problem that I posed for my teachers it's safe to say that I was a godawful burden to my parents as well. My mother has confirmed as much, in fact, though with more delicate language.
So as a (again, mildly) disabled person who was a burden to his parents, why is it controversial that disabled children are considered a burden to their parents, relatively speaking? Hell, if we define disability as anything that impairs age-appropriate autonomy, framing disability as a burden could almost be considered a truism. To think otherwise is a delusion that, as I noted in a comment to a long-ago post, is almost religious in nature.
posted by The Confessor at 9:18 AM on September 8, 2013 [4 favorites]
My older brother was the second (and last, thus far) of my three siblings to marry. My younger brother was on pace to graduate college perhaps a year after the wedding, leaving me the only one of four children with neither a college degree nor any romantic prospects. These facts gave me cause to abandon a competing explanation for my behavioral quirks (my parents' marriage was fucked up in several respects, and I bore the brunt of it during my childhood) and visit a psychiatrist for a formal diagnosis.
My parents kept an inches-thick file on each of their children, and I recently had the opportunity to leaf through mine while searching for my high school diploma. While I did so, I discovered the frequent correspondence home from my early childhood teachers documenting my antisocial and asocial behavior and inability to cope with transitions. I remembered some of the circumstances discussed, but others were new to me, and for the first time I was able to see them in context.
Seeing the early manifestations of my current condition so clearly laid out was shocking. My behavior was so obviously pathological that I couldn't understand why I hadn't been swiftly referred for psychiatric evaluation as a child. My own theory is that my father resisted any attempt to label me because he was afraid it might impact my future prospects. He denies this, but I've found his memory of the past is compromised. Either way, it's entirely possible that the immersion in normal classroom structure that resulted helped me far more than the treatment protocols that existed for Aspergers back in the late 80's and 90's would have.
...and I've just written four paragraphs of extraneous text while dancing around my point.
My home life was obviously less well-documented than at school, but considering the problem that I posed for my teachers it's safe to say that I was a godawful burden to my parents as well. My mother has confirmed as much, in fact, though with more delicate language.
So as a (again, mildly) disabled person who was a burden to his parents, why is it controversial that disabled children are considered a burden to their parents, relatively speaking? Hell, if we define disability as anything that impairs age-appropriate autonomy, framing disability as a burden could almost be considered a truism. To think otherwise is a delusion that, as I noted in a comment to a long-ago post, is almost religious in nature.
posted by The Confessor at 9:18 AM on September 8, 2013 [4 favorites]
On second glance, that previous comment of mine I linked to does not apply particularly well to this context... and even in its original context it was rather unfeeling and cruel (although it was something that genuinely interested me; it wasn't cruelty for its own sake). I apologize for linking it.
posted by The Confessor at 9:40 AM on September 8, 2013
posted by The Confessor at 9:40 AM on September 8, 2013
There seems to be a sentiment here in the the discussion, that it is wrong to acknowledge the burden of parents of disabled children. To me, this is absurd. Of course it is a burden. A huge burden.
However, during our lives, we will all at some point carry burdens. No one goes through life unchallenged. And a loved one who is a burden is still a loved one - our children can be burdens, our parents become burdens at some point, and that is all a part of life. I'm not religious, but I think most religions emphasize that caring for loved ones is a good thing, regardless of how tough it is. In my own experience, those friends who have tried to avoid burdens by isolating themselves have ended up being their own burden, struggling with loneliness and depression.
Nevertheless, the burden can become too heavy. Because humans are not meant to be isolated, we are meant to work together. What is heartbreaking here is that society failed the Stapletons. In my view, this is true regardless of ones political observation; if you are conservative, well the local community and the church should have been there for the family, if you are liberal, it's the state. No single nuclear family can deal with a situation as severe as that of Issy's.
posted by mumimor at 10:30 AM on September 8, 2013 [5 favorites]
However, during our lives, we will all at some point carry burdens. No one goes through life unchallenged. And a loved one who is a burden is still a loved one - our children can be burdens, our parents become burdens at some point, and that is all a part of life. I'm not religious, but I think most religions emphasize that caring for loved ones is a good thing, regardless of how tough it is. In my own experience, those friends who have tried to avoid burdens by isolating themselves have ended up being their own burden, struggling with loneliness and depression.
Nevertheless, the burden can become too heavy. Because humans are not meant to be isolated, we are meant to work together. What is heartbreaking here is that society failed the Stapletons. In my view, this is true regardless of ones political observation; if you are conservative, well the local community and the church should have been there for the family, if you are liberal, it's the state. No single nuclear family can deal with a situation as severe as that of Issy's.
posted by mumimor at 10:30 AM on September 8, 2013 [5 favorites]
I'm sure the people here who have said 'kids/people with disabilities are a burden' don't intend that quite as strongly as it's stated, but I want to say loud and clear that such a blanket statement is false.
There is a very wide continuum of disability and, further, how much of a burden a disability imposes will vary depending on other details about the family and the individual. Physical disabilities are one kind of thing, mental illness or psychiatric condition another, cognitive/developmental disabilities still another... and within each there is a huge range of types and severity of symptoms. There are many millions of people with disabilities in the US alone and life with a disability or with a family member who has a disability is in most cases just one of the varieties of "normal" life. People are resilient and ingenious and find ways to cope with many things that, at first glance, might make one say "I don't know if I could cope with that."
(That said, a disability that prevents a person controlling her own actions, and results in violent physical attacks again and again -- that part of it at least is clearly a terrible burden, both for the person herself and for her family or caretakers. This case is awful and all the points above about how social support is needed are exactly right IMO.)
posted by LobsterMitten at 10:33 AM on September 8, 2013 [5 favorites]
There is a very wide continuum of disability and, further, how much of a burden a disability imposes will vary depending on other details about the family and the individual. Physical disabilities are one kind of thing, mental illness or psychiatric condition another, cognitive/developmental disabilities still another... and within each there is a huge range of types and severity of symptoms. There are many millions of people with disabilities in the US alone and life with a disability or with a family member who has a disability is in most cases just one of the varieties of "normal" life. People are resilient and ingenious and find ways to cope with many things that, at first glance, might make one say "I don't know if I could cope with that."
(That said, a disability that prevents a person controlling her own actions, and results in violent physical attacks again and again -- that part of it at least is clearly a terrible burden, both for the person herself and for her family or caretakers. This case is awful and all the points above about how social support is needed are exactly right IMO.)
posted by LobsterMitten at 10:33 AM on September 8, 2013 [5 favorites]
There is a very wide continuum of disability and, further, how much of a burden a disability imposes will vary depending on other details about the family and the individual. Physical disabilities are one kind of thing, mental illness or psychiatric condition another, cognitive/developmental disabilities still another... and within each there is a huge range of types and severity of symptoms. There are many millions of people with disabilities in the US alone and life with a disability or with a family member who has a disability is in most cases just one of the varieties of "normal" life. People are resilient and ingenious and find ways to cope with many things that, at first glance, might make one say "I don't know if I could cope with that."
posted by LobsterMitten at 1:33 PM on September 8
LobsterMitten, you make an excellent point that the "burden" on the family will vary wildly with the disability. Not all disabilities are going to weigh on people the same way.
However, I think you risk making a blanket statement when you say "People are resilient and ingenious and find ways to cope". One person's ability to cope with any given disability--physically, emotionally, and/or financially--does NOT mean that someone else is going to be able to cope with that same disability. Frankly, it can really suck trying to get to a place where you can cope with the physical, mental, and/or emotional demands of a disability (esp. a profound one is Issy's). And if you're unfortunate enough to be dealing with a disability that creates crushing financial demands on top of everything else, it becomes extremely difficult to find a way to cope.
Sometimes--more times, I think, than society wants to admit--people simply can’t do it. And the expectation that those folks are resilient and ingenious and will find a way to cope is a little too close to the caregiver-on-pedestal meme that's out there about the families of the disabled.
posted by magstheaxe at 10:59 AM on September 8, 2013 [2 favorites]
posted by LobsterMitten at 1:33 PM on September 8
LobsterMitten, you make an excellent point that the "burden" on the family will vary wildly with the disability. Not all disabilities are going to weigh on people the same way.
However, I think you risk making a blanket statement when you say "People are resilient and ingenious and find ways to cope". One person's ability to cope with any given disability--physically, emotionally, and/or financially--does NOT mean that someone else is going to be able to cope with that same disability. Frankly, it can really suck trying to get to a place where you can cope with the physical, mental, and/or emotional demands of a disability (esp. a profound one is Issy's). And if you're unfortunate enough to be dealing with a disability that creates crushing financial demands on top of everything else, it becomes extremely difficult to find a way to cope.
Sometimes--more times, I think, than society wants to admit--people simply can’t do it. And the expectation that those folks are resilient and ingenious and will find a way to cope is a little too close to the caregiver-on-pedestal meme that's out there about the families of the disabled.
posted by magstheaxe at 10:59 AM on September 8, 2013 [2 favorites]
Sure, fully agree. People shouldn't be in a position of having to cope with very severe disabilities alone, for exactly the reasons you say.
I just want us to back off from making far-too-broad statements that conflate very severe disabilities with the full range of disabilities. This is not a point about Issy's case, but about the broader thing of how the general public imagines "life with a disability" or with a disabled child.
posted by LobsterMitten at 11:03 AM on September 8, 2013 [4 favorites]
I just want us to back off from making far-too-broad statements that conflate very severe disabilities with the full range of disabilities. This is not a point about Issy's case, but about the broader thing of how the general public imagines "life with a disability" or with a disabled child.
posted by LobsterMitten at 11:03 AM on September 8, 2013 [4 favorites]
Let's keep in mind that many of the people who are saying that it's understandable that the mother of "one of those children" would snap and try to kill her daughter are probably the same people who were saying that they don't want their kids to have to go to the same schools as kids on the spectrum, who say that Special Education programs are a waste of money that would be better spent on "normal" children, that "those kids" are monsters who should have never been born, who wonder out loud what that mother did wrong to end up with "a kid like that", etc.
What are you talking about? If you'll read the thread, you might notice that the people who understand this best are the parents of disabled children, the very ones who fight tooth and nail for their kids to get services. I was one too, and I completely understand the despair that led up to this tragedy in a way that eludes you completely. How about listening instead of setting up straw men?
posted by Wordwoman at 11:10 AM on September 8, 2013 [6 favorites]
What are you talking about? If you'll read the thread, you might notice that the people who understand this best are the parents of disabled children, the very ones who fight tooth and nail for their kids to get services. I was one too, and I completely understand the despair that led up to this tragedy in a way that eludes you completely. How about listening instead of setting up straw men?
posted by Wordwoman at 11:10 AM on September 8, 2013 [6 favorites]
That living situation should have ended long ago. No-one, and I mean no-one, should have to live in a house day-to-day with someone else who is a constant physical threat to them. And then be expected to express nothing but love and understanding towards that person?
The source of the violence in the house was not your typical DV but the end result is still the same. A bad, volatile living situation where simmering resentment and the threat of violence end in tragedy. Kelli and her other daughter should not have been left alone with Issy, and should not have been made to feel (by society or the family or whoever) they had to shrug off the violence when it did happen. I really feel that was a huge fail on the part of the father, the social workers and the community at large.
There is this idea in the US that "good" parents of severely disabled children devote their lives to caring for them and that no one else can provide the same level of devotion. I know it has roots in bad facilities and some bad cases. But in these cases where the parents literally cannot care for the child it does them a terrible disservice. Once Issy became physically a threat to her family EVERYONE would have been better off if alternative living arrangements could have been made.
posted by fshgrl at 11:13 AM on September 8, 2013 [16 favorites]
The source of the violence in the house was not your typical DV but the end result is still the same. A bad, volatile living situation where simmering resentment and the threat of violence end in tragedy. Kelli and her other daughter should not have been left alone with Issy, and should not have been made to feel (by society or the family or whoever) they had to shrug off the violence when it did happen. I really feel that was a huge fail on the part of the father, the social workers and the community at large.
There is this idea in the US that "good" parents of severely disabled children devote their lives to caring for them and that no one else can provide the same level of devotion. I know it has roots in bad facilities and some bad cases. But in these cases where the parents literally cannot care for the child it does them a terrible disservice. Once Issy became physically a threat to her family EVERYONE would have been better off if alternative living arrangements could have been made.
posted by fshgrl at 11:13 AM on September 8, 2013 [16 favorites]
What are you talking about? If you'll read the thread, you might notice that the people who understand this best are the parents of disabled children, the very ones who fight tooth and nail for their kids to get services. I was one too, and I completely understand the despair that led up to this tragedy in a way that eludes you completely. How about listening instead of setting up straw men?
posted by Wordwoman at 2:10 PM on September 8
Wordwoman, I think echolalia67 is speaking more generally, and not specifically to comments made in this thread. She did says that comment was posted originally to another site.
The comment she copied here doesn't fit well with this thread, though.
posted by magstheaxe at 11:25 AM on September 8, 2013 [1 favorite]
posted by Wordwoman at 2:10 PM on September 8
Wordwoman, I think echolalia67 is speaking more generally, and not specifically to comments made in this thread. She did says that comment was posted originally to another site.
The comment she copied here doesn't fit well with this thread, though.
posted by magstheaxe at 11:25 AM on September 8, 2013 [1 favorite]
I know it has roots in bad facilities and some bad cases.
Well, and the complete underfunding of almost all facilities. Deinstitutionalization was supposed to eliminate long-term institutionalization in favor of a robust network of community out-patient care. But rather than shifting funding from big institutions to local out-patient facilities and reintegrating people with disabilities back into the community in meaningful ways, governments just cut the funding. So now we've got a system in the US where there's just no funding for anyone trying to help, which very much places the responsibility right back on people with disabilities or their families.
posted by jaguar at 11:26 AM on September 8, 2013 [8 favorites]
Well, and the complete underfunding of almost all facilities. Deinstitutionalization was supposed to eliminate long-term institutionalization in favor of a robust network of community out-patient care. But rather than shifting funding from big institutions to local out-patient facilities and reintegrating people with disabilities back into the community in meaningful ways, governments just cut the funding. So now we've got a system in the US where there's just no funding for anyone trying to help, which very much places the responsibility right back on people with disabilities or their families.
posted by jaguar at 11:26 AM on September 8, 2013 [8 favorites]
I am about to show my complete ignorance here and possibly ask what amounts to a dumb question, but really: why are these treatment facilities so expensive? I think I read in comments in one of the linked post that some of these treatment facilities cost $56,000 a year, plus $3,000 a month "tuition". WHY?
posted by SkylitDrawl at 12:06 PM on September 8, 2013
posted by SkylitDrawl at 12:06 PM on September 8, 2013
Jaguar, I guess me point is that anyone who even suggests institutional facilities is immediately rebutted with horror stories and the idea that no good parent would ever let their child go to one. It's a narrative that for many years has allowed the community to keep not helping families like this. Good facilities, both day and residential, and that do not require the parents to surrender parental rights are CLEARLY needed in the US. Strong family networks largely don't exist, especially in the middle class.
I have a very profoundly disabled relative in Europe that for about 45 years now has attended a "school" that picks him up in the morning and drops him off around 5pm. His routine medical care and most of his therapies take place at the school. His family cares for him overnight and on the weekends. This small but reliable amount of help from the state has allowed the family to remain stable for decades and the other children and parents to succeed financially. It's so obviously beneficial to everyone.
If the narrative in the US shifted from "institutions are evil, good parents do it all at home" to "how can we make this work better as a community?" we might get somewhere. But the last 30 years of political rhetoric make that unlikely and it's women like Kelli and Issy and the other daughter that suffer for it.
posted by fshgrl at 12:14 PM on September 8, 2013 [27 favorites]
I have a very profoundly disabled relative in Europe that for about 45 years now has attended a "school" that picks him up in the morning and drops him off around 5pm. His routine medical care and most of his therapies take place at the school. His family cares for him overnight and on the weekends. This small but reliable amount of help from the state has allowed the family to remain stable for decades and the other children and parents to succeed financially. It's so obviously beneficial to everyone.
If the narrative in the US shifted from "institutions are evil, good parents do it all at home" to "how can we make this work better as a community?" we might get somewhere. But the last 30 years of political rhetoric make that unlikely and it's women like Kelli and Issy and the other daughter that suffer for it.
posted by fshgrl at 12:14 PM on September 8, 2013 [27 favorites]
Yes, I agree that horror stories are a problem, but I actually think the bigger problem is that a lot of facilities are worthy of the horror stories, because they're so underfunded. The political rhetoric you talk about has worked, in a lot of instances; we've convinced people that institutions are bad, so institutions don't get any government funding, which means that they deteriorate -- and so we're in the self-fulfilling prophecy point of the cycle, where people are convinced that institutions don't deserve money because they're "bad," when what would make them better is... more money.
In the US, there's a ton of community mental health centers, private and public, fighting to get more funding. But as you point out, the political rhetoric has shifted so far to the right on this issue (and way too many others) that we don't fund those, either, because "good parents do it all at home," so community mental health care becomes viewed as some sort of welfare or entitlement, rather than as a WAY cheaper alternative to prisons and institutions and homelessness and all the other places that people with un- and undertreated mental illness tend to end up in appalling numbers.
posted by jaguar at 12:23 PM on September 8, 2013 [5 favorites]
In the US, there's a ton of community mental health centers, private and public, fighting to get more funding. But as you point out, the political rhetoric has shifted so far to the right on this issue (and way too many others) that we don't fund those, either, because "good parents do it all at home," so community mental health care becomes viewed as some sort of welfare or entitlement, rather than as a WAY cheaper alternative to prisons and institutions and homelessness and all the other places that people with un- and undertreated mental illness tend to end up in appalling numbers.
posted by jaguar at 12:23 PM on September 8, 2013 [5 favorites]
What happened to U.S. mental health care after deinstitutionalization? is a great article about both the benefits and failures of deinstitutionalization in the US.
On the whole, deinstitutionalization improved the lives of millions of Americans living with intellectual and developmental disabilities (I/DD) — albeit with many exceptions. These policies allowed people to live with proper support, on a human scale, within their own communities. Second, deinstitutionalization was far less successful in serving the needs of Americans suffering from severe mental illness (SMI) — again, with many exceptions.
posted by jaguar at 12:54 PM on September 8, 2013 [5 favorites]
On the whole, deinstitutionalization improved the lives of millions of Americans living with intellectual and developmental disabilities (I/DD) — albeit with many exceptions. These policies allowed people to live with proper support, on a human scale, within their own communities. Second, deinstitutionalization was far less successful in serving the needs of Americans suffering from severe mental illness (SMI) — again, with many exceptions.
posted by jaguar at 12:54 PM on September 8, 2013 [5 favorites]
Argh, posted link in wrong thread and didn't notice until the editing window was too late.
I keep thinking about this situation. I cannot think of any better options for this family that don't involve an infinite pile of money, institutionalization, or death. I am seriously unable to think of any way to make this less worse. No wonder the mom couldn't come up with anything better either.
posted by jenfullmoon at 12:59 PM on September 8, 2013 [2 favorites]
I keep thinking about this situation. I cannot think of any better options for this family that don't involve an infinite pile of money, institutionalization, or death. I am seriously unable to think of any way to make this less worse. No wonder the mom couldn't come up with anything better either.
posted by jenfullmoon at 12:59 PM on September 8, 2013 [2 favorites]
Justinian, as far as what specifically the system should offer, I think emergency respite care lasting up to 72 hours would be a good start. In my area, there is emergency shelter care for children, but I don't know that they would be equipped to take a child with Issy's special needs. Emergency respite care, with a much smaller staff/client ratio and staff trained in safe restraint techniques, could give parents that break they need on an emergency basis and possibly prevent a tragedy from occurring.
posted by epj at 1:56 PM on September 8, 2013
posted by epj at 1:56 PM on September 8, 2013
The issues around how disabled lives are valued and undervalued is a real one that deserves discussion. But another thing this makes me think about is how we think about people who kill.
I work as a nurse in a county hospital and I work with patients who have recently shot people (and are under police custody while hospitalized) and who have been shot. Sometimes there was a gun fight of some kind so both things happened at once. I guess I was already inclined this way, but when you see someone when they're vulnerable like that, I find it pretty easy to see their humanity. I don't think anyone gets to the point of shooting someone without suffering pretty enormously.
But yeah, I already didn't think a punishment centered attitude toward those who have hurt others is one that decreases suffering, or prevents more suffering.
posted by latkes at 1:57 PM on September 8, 2013 [6 favorites]
I work as a nurse in a county hospital and I work with patients who have recently shot people (and are under police custody while hospitalized) and who have been shot. Sometimes there was a gun fight of some kind so both things happened at once. I guess I was already inclined this way, but when you see someone when they're vulnerable like that, I find it pretty easy to see their humanity. I don't think anyone gets to the point of shooting someone without suffering pretty enormously.
But yeah, I already didn't think a punishment centered attitude toward those who have hurt others is one that decreases suffering, or prevents more suffering.
posted by latkes at 1:57 PM on September 8, 2013 [6 favorites]
Not blaming the mother for trying to murder her child is insulting to the millions of parents of autistic children who do their damnedest to keep their families healthy and happy.
This statement implies that this mother didn't do her best. That this mother could have done more. That she just half assed her years with her daughter. Which I doubt but cannot prove against. And it sounds like all those other parents in this comparison have the exact same resources as this mother. Which I doubt.
Suicide seems to require three things concurrent:
That society calls on mothers to make such enormous sacrifices and then does not support those sacrifices is itself shameful.
There are people who will tell you that as women, our daughters are reflections of ourselves in the world. When they fail, so do we. When they are perceived badly, so are we. When we fail, it reflects on our daughters. So in that vein, I can academically understand a suicidal mother who feels that her child is an extension of herself taking this action of murder suicide.
Emotionally, I cannot. Because I have never been in those shoes. I do not have any children.
(I'd also like to point out that in my every day life I quietly comment that the practice of a mother at home alone with n children is so far outside of the human evolution timeline as to strike terror in my heart. And for most children, they're healthy and neurotypical and still you get stories of mothers feeling like they cannot handle it. And then we have parents (usually mothers) who face being alone with a child who will effectively never grow up.)
My heart breaks for everyone in this situation.
posted by bilabial at 2:42 PM on September 8, 2013 [13 favorites]
This statement implies that this mother didn't do her best. That this mother could have done more. That she just half assed her years with her daughter. Which I doubt but cannot prove against. And it sounds like all those other parents in this comparison have the exact same resources as this mother. Which I doubt.
Suicide seems to require three things concurrent:
- A sense of being disconnected (shame will do this, and she mentioned that the people/person who notified her that she would not be receiving necessary services was "cruel")
- A sense of being a burden (she needed resources that she couldn't get to care for her daughter, and the person who denied her the resources was apparently not very nice about it)
- Not being afraid to die (I can imagine the prospect of a lifetime of your daughter being physically violent toward you, and others, must be terrifying, and for however brief a moment, being dead might have seemed better.)
That society calls on mothers to make such enormous sacrifices and then does not support those sacrifices is itself shameful.
There are people who will tell you that as women, our daughters are reflections of ourselves in the world. When they fail, so do we. When they are perceived badly, so are we. When we fail, it reflects on our daughters. So in that vein, I can academically understand a suicidal mother who feels that her child is an extension of herself taking this action of murder suicide.
Emotionally, I cannot. Because I have never been in those shoes. I do not have any children.
(I'd also like to point out that in my every day life I quietly comment that the practice of a mother at home alone with n children is so far outside of the human evolution timeline as to strike terror in my heart. And for most children, they're healthy and neurotypical and still you get stories of mothers feeling like they cannot handle it. And then we have parents (usually mothers) who face being alone with a child who will effectively never grow up.)
My heart breaks for everyone in this situation.
posted by bilabial at 2:42 PM on September 8, 2013 [13 favorites]
Not being afraid to die (I can imagine the prospect of a lifetime of your daughter being physically violent toward you, and others, must be terrifying, and for however brief a moment, being dead might have seemed better.)
I don't think this is always the case. Plenty of suicidal people are afraid to die. They are often MORE afraid to live.
posted by roomthreeseventeen at 2:58 PM on September 8, 2013 [1 favorite]
I don't think this is always the case. Plenty of suicidal people are afraid to die. They are often MORE afraid to live.
posted by roomthreeseventeen at 2:58 PM on September 8, 2013 [1 favorite]
Emergency respite care, with a much smaller staff/client ratio and staff trained in safe restraint techniques, could give parents that break they need on an emergency basis and possibly prevent a tragedy from occurring.
That would be a good solution. It sounds extremely expensive. The problem is that the money spent on one child like Issy might be able to help fifty other children instead. How do we prioritize that situation? Sure you could say "help all of them", but there's always a limit to how much you can do.
We can obviously do better than we do now, though, given the "screw you I have mine" attitude of much anti-tax sentiment.
But paying multiple highly trained people to help care for one child may not be possible even under a better social safety net. Sometimes people have problems that are too severe for us to handle.
posted by Justinian at 3:08 PM on September 8, 2013
That would be a good solution. It sounds extremely expensive. The problem is that the money spent on one child like Issy might be able to help fifty other children instead. How do we prioritize that situation? Sure you could say "help all of them", but there's always a limit to how much you can do.
We can obviously do better than we do now, though, given the "screw you I have mine" attitude of much anti-tax sentiment.
But paying multiple highly trained people to help care for one child may not be possible even under a better social safety net. Sometimes people have problems that are too severe for us to handle.
posted by Justinian at 3:08 PM on September 8, 2013
But paying multiple highly trained people to help care for one child may not be possible even under a better social safety net. Sometimes people have problems that are too severe for us to handle.
Why wouldn't it be possible under a better social safety net? Why can a government not tax its citizens to provide lifelong institutionalization for people who need it? Could you please explain why you think this wouldn't be possible?
The solution of "well, the parents just have to care for this person; sucks to be them" is not a solution. That amounts to forced conscription in the care of another person like Issy, and it is inhumane to the family or person who is forced to assume this burden if they don't want it.
The purpose of taxes and government services is to solve problems collectively that individuals cannot efficiently handle themselves. Institutionalized care for the severely mentally ill should be one of these services.
posted by Unified Theory at 3:34 PM on September 8, 2013 [4 favorites]
Why wouldn't it be possible under a better social safety net? Why can a government not tax its citizens to provide lifelong institutionalization for people who need it? Could you please explain why you think this wouldn't be possible?
The solution of "well, the parents just have to care for this person; sucks to be them" is not a solution. That amounts to forced conscription in the care of another person like Issy, and it is inhumane to the family or person who is forced to assume this burden if they don't want it.
The purpose of taxes and government services is to solve problems collectively that individuals cannot efficiently handle themselves. Institutionalized care for the severely mentally ill should be one of these services.
posted by Unified Theory at 3:34 PM on September 8, 2013 [4 favorites]
Could you please explain why you think this wouldn't be possible?
Because no matter how much you spend there's always going to be someone you could help if you spend a bit more. We might be able to help Issy at a better level of spending but the edge case would just move further out to someone else.
Really, I'm not saying we shouldn't spend more. Obviously we should. I'm just saying we shouldn't kid ourselves that everyone could live happily ever after; there's always going to be a failure mode.
posted by Justinian at 4:31 PM on September 8, 2013 [3 favorites]
Because no matter how much you spend there's always going to be someone you could help if you spend a bit more. We might be able to help Issy at a better level of spending but the edge case would just move further out to someone else.
Really, I'm not saying we shouldn't spend more. Obviously we should. I'm just saying we shouldn't kid ourselves that everyone could live happily ever after; there's always going to be a failure mode.
posted by Justinian at 4:31 PM on September 8, 2013 [3 favorites]
I have friends who have a child who behaves like Issy. The family has the best possible support, which included for many years round the clock nurses and access to the best doctors in the country.
The child has also life-threatening medical issues that meant frequent trips to the ER or interventions by on-site medical staff and parents. Had one of these interventions been delayed or gone wrong there is a good change the child would have died.
This kid frequently hits their head hard enough to break skin, even with constant supervision, and frequently tries to strike or headbutt caregivers, at least once so hard that the recipient may have had a concussion.
One day, this child will become a strong adult.
The parents don't get the sort of sleep you or I get, ever. Any night, their kid might die, there are strangers in the house, and ICU type monitoring machines that have false alarms.
If you've ever cared for an infant, imagine the early period never ended. Imagine more than a decade of sleep deprivation, worry, and on top of this, regular alarms indicating immediate medical intervention. Imagine no privacy at home because of a constantly changing roster of medical staff.
I have tremendous sympathy for anyone, parent and child both, in a situation like this.
posted by zippy at 6:57 PM on September 8, 2013 [11 favorites]
The child has also life-threatening medical issues that meant frequent trips to the ER or interventions by on-site medical staff and parents. Had one of these interventions been delayed or gone wrong there is a good change the child would have died.
This kid frequently hits their head hard enough to break skin, even with constant supervision, and frequently tries to strike or headbutt caregivers, at least once so hard that the recipient may have had a concussion.
One day, this child will become a strong adult.
The parents don't get the sort of sleep you or I get, ever. Any night, their kid might die, there are strangers in the house, and ICU type monitoring machines that have false alarms.
If you've ever cared for an infant, imagine the early period never ended. Imagine more than a decade of sleep deprivation, worry, and on top of this, regular alarms indicating immediate medical intervention. Imagine no privacy at home because of a constantly changing roster of medical staff.
I have tremendous sympathy for anyone, parent and child both, in a situation like this.
posted by zippy at 6:57 PM on September 8, 2013 [11 favorites]
Here's a This American Life episode that includes the story of parents who put their autistic son in a live-in care facility. They struggle with the decision, but it ends up being a good situation for everyone involved.
317: Unconditional Love
I don't have much experience with special needs children, but for me this seems like the best case scenario for a family like the Stapletons. Now I'm wondering how much the family ended up paying for this type of care.
posted by balacat at 9:59 PM on September 8, 2013 [1 favorite]
317: Unconditional Love
I don't have much experience with special needs children, but for me this seems like the best case scenario for a family like the Stapletons. Now I'm wondering how much the family ended up paying for this type of care.
posted by balacat at 9:59 PM on September 8, 2013 [1 favorite]
Reading this post, the saddest part is
"She had problem behaviors (hitting), directed mainly to me but sometimes her little sister too. Our local CMH (community mental health) provided a behaviorist. She worked on our case for over two years without supervision. I did everything she said and Issy’s behavior got worse. I begged her to consult someone. She finally suggested I put Issy in foster care. No, we’re not going to do that because she is OURS AND WE LOVE HER!!!"posted by ThatFuzzyBastard at 10:09 PM on September 8, 2013 [1 favorite]
I too think that one of the fundamental problems was that the parents were unable to come to terms with the fact that their daughter needed to be institutionalized on a permanent basis. Probably the first time she hospitalized someone, definitely the second. They simply aren't capable of protecting other people from her; she needs to be a environment with sufficiently layered supervision that she can be kept from harming others. This is even more true if the claims of abuse upthread have any basis. Though the fact that the doctors at the residental program she was in considered it somewhat of a triumph that they were able with six months intensive work to get her violent episodes down from two minutes apart to five suggests that her mental illness is not a function of her family.
I found it incredibly irresponsible that they let their other daughter be continually abused, in particular; where the hell were CPS?
posted by tavella at 1:55 AM on September 9, 2013 [5 favorites]
I found it incredibly irresponsible that they let their other daughter be continually abused, in particular; where the hell were CPS?
posted by tavella at 1:55 AM on September 9, 2013 [5 favorites]
What makes me furious is that I have seen more intense and more consistent outrage over people that have abused their petss than what I've seen w/r/t Issy.
Think about that for a sec-- if somebody killed their cat or their dog, no one would be rushing to defend them with bs like “Oh well it just wouldn’t stop barking and barking and barking, it was exhuasting, and sometimes it even bit them! That poor owner, they just couldn’t handle the strain of it all anymore!”
I see this, and it means that to so many people, autistic people are worth less than an animal in the eyes of so many non-neurotypical people. And I see red.
posted by ShawnStruck at 4:17 AM on September 9, 2013
Think about that for a sec-- if somebody killed their cat or their dog, no one would be rushing to defend them with bs like “Oh well it just wouldn’t stop barking and barking and barking, it was exhuasting, and sometimes it even bit them! That poor owner, they just couldn’t handle the strain of it all anymore!”
I see this, and it means that to so many people, autistic people are worth less than an animal in the eyes of so many non-neurotypical people. And I see red.
posted by ShawnStruck at 4:17 AM on September 9, 2013
ShawnStruck, I don't think that's what it means because you can take an animal to a shelter.
posted by kat518 at 4:24 AM on September 9, 2013 [1 favorite]
posted by kat518 at 4:24 AM on September 9, 2013 [1 favorite]
Suggest you read the blog, mentioned at the top of the post.
Meanwhile, let me fix this for you:
"Think about that for a sec-- if somebody killed their cat or their dog, no one would be rushing to defend them with bs like “Oh well it just wouldn’t stop barking and barking and barking, it was exhuasting, and sometimesit even bit them savagely attacked them! That poor owner, they just couldn’t handle the strain of it all anymore!”
posted by Mister Bijou at 5:17 AM on September 9, 2013 [2 favorites]
Meanwhile, let me fix this for you:
"Think about that for a sec-- if somebody killed their cat or their dog, no one would be rushing to defend them with bs like “Oh well it just wouldn’t stop barking and barking and barking, it was exhuasting, and sometimes
posted by Mister Bijou at 5:17 AM on September 9, 2013 [2 favorites]
Think about that for a sec-- if somebody killed their cat or their dog, no one would be rushing to defend them with bs like “Oh well it just wouldn’t stop barking and barking and barking, it was exhuasting, and sometimes it even bit them! That poor owner, they just couldn’t handle the strain of it all anymore!”
What are you talking about? Dogs are killed all the time for being to aggressive. Do you realize that in a lot of places if your dog bites people, you can be ordered by the court to put to sleep? That shelters euthanize dogs who they think have aggression problems?
posted by nooneyouknow at 5:30 AM on September 9, 2013 [5 favorites]
What are you talking about? Dogs are killed all the time for being to aggressive. Do you realize that in a lot of places if your dog bites people, you can be ordered by the court to put to sleep? That shelters euthanize dogs who they think have aggression problems?
posted by nooneyouknow at 5:30 AM on September 9, 2013 [5 favorites]
Mod note: Let's not all completely derail here with the pets analogy; thanks.
posted by taz (staff) at 6:54 AM on September 9, 2013 [3 favorites]
posted by taz (staff) at 6:54 AM on September 9, 2013 [3 favorites]
There really is barely any empathy in this thread for Issy. The mother tried to murder her, but everyone is assuming Issy's violent outbursts were simply her fault or the fault of her "disability", and that her mother provided nothing but unconditional love right up until the moment of premeditated attempted murder.
Since we can't ready Issy's blog from her perspective, has anyone considered the possibility that maybe the internal dynamics of the family and her relationship weren't actually all that loving for some number of days or weeks or months or more before her mother came to the decision that murder was her best option?
Frankly reading through Kelli's blog, just about everything from the title ("the status woe") on down strike me as narcissistic and lying to herself and us about her honest emotions. Fuck's sake a post from the day of the attempted murder was "We picked up Issy from treatment. It feels wonderful to have her home. All of us as a family again. Living and loving under one roof. So much love…."
Is this someone posting an honest account of what her home was like? Did Issy feel "so much love" a few hours before her mom tried to kill her?
If this was a man who just murdered his wife with a blog full of "but it's so fucking hard to live with her and her outbursts ... but she's so wonderful. Living and loving ... So much love", I somehow doubt we'd have a MeFi thread full of one-sided sympathy and empathy for the murderer and people who take the murderer's descriptions of his relationship at face value.
posted by crayz at 9:51 AM on September 9, 2013 [2 favorites]
Since we can't ready Issy's blog from her perspective, has anyone considered the possibility that maybe the internal dynamics of the family and her relationship weren't actually all that loving for some number of days or weeks or months or more before her mother came to the decision that murder was her best option?
Frankly reading through Kelli's blog, just about everything from the title ("the status woe") on down strike me as narcissistic and lying to herself and us about her honest emotions. Fuck's sake a post from the day of the attempted murder was "We picked up Issy from treatment. It feels wonderful to have her home. All of us as a family again. Living and loving under one roof. So much love…."
Is this someone posting an honest account of what her home was like? Did Issy feel "so much love" a few hours before her mom tried to kill her?
If this was a man who just murdered his wife with a blog full of "but it's so fucking hard to live with her and her outbursts ... but she's so wonderful. Living and loving ... So much love", I somehow doubt we'd have a MeFi thread full of one-sided sympathy and empathy for the murderer and people who take the murderer's descriptions of his relationship at face value.
posted by crayz at 9:51 AM on September 9, 2013 [2 favorites]
I too think that one of the fundamental problems was that the parents were unable to come to terms with the fact that their daughter needed to be institutionalized on a permanent basis.
You are presuming that appropriate facilities exist and are affordable. You would be incorrect.
posted by Wordwoman at 10:06 AM on September 9, 2013 [3 favorites]
You are presuming that appropriate facilities exist and are affordable. You would be incorrect.
posted by Wordwoman at 10:06 AM on September 9, 2013 [3 favorites]
Justinian, we already spend money providing respite care for children and adults like Issy. What I'm suggesting would be one of two different things, depending on the area: either a shelter-like respite facility in urban areas, where numbers would support it, possibly incorporated as part of existing group respite facilities, or "emergency respite homes", like "emergency foster homes", in more rural areas, that can accommodate children on very little notice. Yes, it would cost money, but the money wouldn't be spent on "one child"; these facilities/resources would be available to all families/children (and possibly adults) in the area who needed these specialized respite services. Yes, such a service could have helped Issy and her family, but this is not about helping *just* Issy--this is about preventing any further situations like Issy's from occurring.
posted by epj at 10:16 AM on September 9, 2013
posted by epj at 10:16 AM on September 9, 2013
Wordwoman, if necessary, they should have given up custody to the state. A great solution? No. But they could not handle her, and they could not keep their other children safe from her. And it was clear that they were fighting against that, with their repeated insistence that she would be at home with them forever and the angry rejection of the idea of putting her in foster care. That fixation led to years of terror and abuse of their other daughter, and likely fed the delusion that murder-suicide was the only way out -- after all, calling 911 would result in Issy being institutionalized, and just killing herself would leave Issy at home with even less support and her other children still in danger.
And in fact, if Issy was being abused -- and I'll note that we have no evidence of it -- it would have been far better for her. If they had moved towards institutionalization earlier, they could spent all that effort towards getting her into the best institutional care they could manage, and would be able to continue to visit and support her with love, instead of trying to fight down simmering resentment and fear.
posted by tavella at 10:20 AM on September 9, 2013 [2 favorites]
And in fact, if Issy was being abused -- and I'll note that we have no evidence of it -- it would have been far better for her. If they had moved towards institutionalization earlier, they could spent all that effort towards getting her into the best institutional care they could manage, and would be able to continue to visit and support her with love, instead of trying to fight down simmering resentment and fear.
posted by tavella at 10:20 AM on September 9, 2013 [2 favorites]
The more time I spend reading the blog the more disgusted I am. This woman has an incredible victim complex - half of her mind is always dedicated to the performance she's putting on for the world - e.g. what is with this "typical day" video, with her "cleaning up" in hysterical tears, while taking a cell phone video? The thought process is obviously "I'll show everyone how sad and tough my life is."
And then the "hard to love club" ...
There are literally zero people on MeFi who would find this mother's behavior acceptable if not for an implicit sense that Issy's disability makes her less than human.
The blog reads in retrospect like "my defense of why I murdered my child" - looks like it's working for a lot of people. Too bad we'll never get to hear from Issy.
posted by crayz at 10:25 AM on September 9, 2013 [1 favorite]
And then the "hard to love club" ...
I have a daughter firmly planted in autism’s “hard to love club”.This would be deeply unsympathetic posted on an anonymous blog - on one where you name your child and where you live and show pictures of her? It suggests you see her as barely human, to think writing this about your own child is OK.
She is well beyond “cute toddler” stage; where she had bright blue eyes, ringlet curls, and deep sweet dimples.
[Issy] is overweight. It isn’t her fault; we had her on medications that caused her to gain weight. A lot of weight. But there isn’t anything endearing about an overweight teenager rampaging through a house or classroom.
She could care less about hygiene. It’s not uncommon to see her with wildly unruly hair, food in her teeth, stains on her shirt, or even smelling of body odor.
There are literally zero people on MeFi who would find this mother's behavior acceptable if not for an implicit sense that Issy's disability makes her less than human.
The blog reads in retrospect like "my defense of why I murdered my child" - looks like it's working for a lot of people. Too bad we'll never get to hear from Issy.
posted by crayz at 10:25 AM on September 9, 2013 [1 favorite]
Tavella, your knowing declarations are exactly the ones that parents of disabled children face all the time and they are maddening. You are discounting the hundreds of hours of consultations that these parents had with therapists, doctors, teachers, social workers, and yet, to you, the solution is obvious, because you read an article and now have superior understanding. How many disabled children (or children at all?) have you parented? Let me guess...
posted by Wordwoman at 10:28 AM on September 9, 2013 [1 favorite]
posted by Wordwoman at 10:28 AM on September 9, 2013 [1 favorite]
Also just in case anyone cares:
On Friday, after three days in the ICU, she was still unresponsive and had confirmed brain damage. After not seeing any changes in her condition, it was decided Friday evening to remove Isabelle from the ventilator. She responded by breathing on her own for the rest of the evening. The following morning, she awoke from her four day "coma-like" state asking questions, making requests, and quite incredibly, showing signs of the amazing young woman she is. For three days, she was hooked up to machines and showed very little progress. Fast forward 24 hours and we are out of the critical unit, completely independent, and beginning discussions about the extent of her brain damage. She has smiled and is now walking and talking. It is nothing short of a miracle. While she still has several obstacles to overcome, we are extremely hopeful with this unbelievable turn of events.posted by crayz at 10:36 AM on September 9, 2013 [2 favorites]
Wordwoman, strangely enough, one does not have to be a parent of a disabled child to analyze a situation. If you can't keep your other children from being attacked, you need to remove the child doing the attacking from the home. If you can't keep your mentally impaired child from putting you in the hospital, you need to turn her over to a situation where she can be intensively monitored or trained with enough backup to keep her from hurting people. And I'll note that the parents would only be growing older and more frail, while Issy would be growing stronger and almost certainly outliving them. It was not a permanently tenable situation in any case.
I'll also point out that *all sides* in this are essentially agreeing that Issy should have been institutionalized; whether it's my belief the family were locked into a delusion that they could safely care for Issy, or crayz's anger at Kelli for admitting it's kind of hard to love a violent teenager compared to a cute little kid, or dbltall's belief that Issy was being abused. After all, if her family wasn't good enough to care for her, then the only place she was going to go was institutional care of some kind, whether a lockdown facility or an intensive group home.
posted by tavella at 10:45 AM on September 9, 2013
I'll also point out that *all sides* in this are essentially agreeing that Issy should have been institutionalized; whether it's my belief the family were locked into a delusion that they could safely care for Issy, or crayz's anger at Kelli for admitting it's kind of hard to love a violent teenager compared to a cute little kid, or dbltall's belief that Issy was being abused. After all, if her family wasn't good enough to care for her, then the only place she was going to go was institutional care of some kind, whether a lockdown facility or an intensive group home.
posted by tavella at 10:45 AM on September 9, 2013
crayz--followed this for a few days. Your comments, while caring, reflect a profound misunderstanding of severe autism, many of the associated behaviors and the unremitting stress and danger some (only a few) autistic children bring into the home. I would hope you would take a more generous view of the family and mother. You also are ascribing certain characteristics to Issy that may not exist in reality. Of all developmental disabilities/mental illnesses children such as Issy may be the most challenging/heartbreaking and emotionally and physically devastating with whom to live.
posted by rmhsinc at 10:54 AM on September 9, 2013 [7 favorites]
posted by rmhsinc at 10:54 AM on September 9, 2013 [7 favorites]
Your comments, while caring, reflect a profound misunderstanding of severe autism, many of the associated behaviors and the unremitting stress and danger some (only a few) autistic children bring into the home.
I am on the spectrum myself and have spent time with many other people and children on the autistic spectrum, and I am not willing to put the blame for the stress of the situation in that home solely on the shoulders of the child. We can agree to disagree but don't simply assume I'm "misunderstanding"
How many people here said "you can't empathize with the parent" vs. "you can't empathize with the child"? The parent's violence is seen as understandable, the child's violence is seen as incomprehensible.
posted by crayz at 11:28 AM on September 9, 2013 [1 favorite]
I am on the spectrum myself and have spent time with many other people and children on the autistic spectrum, and I am not willing to put the blame for the stress of the situation in that home solely on the shoulders of the child. We can agree to disagree but don't simply assume I'm "misunderstanding"
How many people here said "you can't empathize with the parent" vs. "you can't empathize with the child"? The parent's violence is seen as understandable, the child's violence is seen as incomprehensible.
posted by crayz at 11:28 AM on September 9, 2013 [1 favorite]
The parent's violence and the child's violence are both seen as stemming from mental illness.
posted by Holy Zarquon's Singing Fish at 11:35 AM on September 9, 2013
posted by Holy Zarquon's Singing Fish at 11:35 AM on September 9, 2013
Indeed. If the child's violence was seen as "incomprehensible", people would be suggesting that she be jailed. She's mentally ill, she can't control that; the question is how to keep both her and the people around her safe.
posted by tavella at 11:40 AM on September 9, 2013 [3 favorites]
posted by tavella at 11:40 AM on September 9, 2013 [3 favorites]
The parent's violence and the child's violence are both seen as stemming from mental illness.
And I am suggesting that perhaps the child's violence stems at least in part from the parent's mental illness, just as you are suggesting that the parent's violence stems from the child's mental illness.
posted by crayz at 11:44 AM on September 9, 2013 [2 favorites]
And I am suggesting that perhaps the child's violence stems at least in part from the parent's mental illness, just as you are suggesting that the parent's violence stems from the child's mental illness.
posted by crayz at 11:44 AM on September 9, 2013 [2 favorites]
Uh, I'm suggesting that the parent's violence stems from her own mental illness. Which almost certainly did lead to Issy getting worse too. I mentioned my brother-in-law above - his violent outbursts got worse and more frequent after his mother was diagnosed with cancer. I doubt that's a coincidence, and however the cancer affected my mother-in-law's behavior would be small potatoes next to how much suicidal depression will change someone. That doesn't make it either person's fault.
posted by Holy Zarquon's Singing Fish at 11:52 AM on September 9, 2013 [1 favorite]
posted by Holy Zarquon's Singing Fish at 11:52 AM on September 9, 2013 [1 favorite]
crayz, I will point out that again you are essentially very angrily agreeing with me; Issy should have been institutionalized. Me, because I don't think her family could care for her safely despite their best intentions, you because you think they were bad people. But we both agree: she should not have been in that home.
posted by tavella at 11:53 AM on September 9, 2013
posted by tavella at 11:53 AM on September 9, 2013
crayz: I watched the video you linked. You may have misunderstood her intentions behind the video? The description under the video reads: "My autistic daughter is agressive. She was agitated and pulled my hair then hit me several times (she is bigger than me). She then went and threw a diet coke and water all over the kitchen. I was in the process of calling my husband for help when I must have hit the record button. This video is what happened next."
posted by aielen at 12:04 PM on September 9, 2013 [2 favorites]
posted by aielen at 12:04 PM on September 9, 2013 [2 favorites]
This is not an issue of blame, responsibility, empathy or whatever. And crayz, while you maybe on the spectrum I will clearly assert that for some children ( and adults) there is no reasonable solution. It is not a lack of empathy for the child but rather an overwhelming difficulty understanding what the child (Issy) is experiencing. For some of these children institutionalization, even the best, is terribly isolating and a constant struggle for control and management ( but the problem is hidden) and home based care is fraught with uncertainty, fear, fatigue and constant battles for control and management. In some cases I seriously wonder if there is a solution to which all can aspire even if money could buy a solution. My heart goes out to all.
posted by rmhsinc at 12:41 PM on September 9, 2013 [1 favorite]
posted by rmhsinc at 12:41 PM on September 9, 2013 [1 favorite]
up custody to the state. A great solution? No. But they could not handle her, and they could not keep their other children safe from her. And it was clear that they were fighting against that, with their repeated insistence that she would be at home with them forever and the angry rejection of the idea of putting her in foster care.
I don't think giving up custody to the state should have a damn thing to do with them getting help or having access to residential care if needed. If you make that a condition of course families are going to say no. That's some Sophies Choice bullshit right there.
posted by fshgrl at 1:39 PM on September 9, 2013 [3 favorites]
I don't think giving up custody to the state should have a damn thing to do with them getting help or having access to residential care if needed. If you make that a condition of course families are going to say no. That's some Sophies Choice bullshit right there.
posted by fshgrl at 1:39 PM on September 9, 2013 [3 favorites]
Quite often giving up custody is the only way for a family to make the child eligible for Medicaid ( or State equivalent) as the family can not, and could not, afford the cost of long term residential care. It is not an infrequent, and not necessarily undesirable, strategy for receiving essential care. The alternative is to bankrupt the family so the child qualifies. It is also part of a State strategy to assure that the most needy receive care and services are exploited by those who could pay without causing bankruptcy.
posted by rmhsinc at 1:52 PM on September 9, 2013 [3 favorites]
posted by rmhsinc at 1:52 PM on September 9, 2013 [3 favorites]
Goddamit, I agree with the whole "if it were me, I'd..." bullshit, but Jesus tapdancing Christ she had no options. I'm physically larger than that therapist guy, but goddamn, I can't go toe to toe with my teen-aged daughter, can I?
I'm no doctor, so my medical opinion on this is huggy-feely bullshit, but when does your obligation end?
Sure, she's my daughter, does that make me obligated to let her kill me? Because I probably would.
Is that worse than lighting a couple Webers in a closed minivan? I really can't see how.
posted by Sphinx at 8:19 PM on September 9, 2013
I'm no doctor, so my medical opinion on this is huggy-feely bullshit, but when does your obligation end?
Sure, she's my daughter, does that make me obligated to let her kill me? Because I probably would.
Is that worse than lighting a couple Webers in a closed minivan? I really can't see how.
posted by Sphinx at 8:19 PM on September 9, 2013
Jesus tapdancing Christ she had no options. I'm physically larger than that therapist guy, but goddamn, I can't go toe to toe with my teen-aged daughter, can I?
Sure, she's my daughter, does that make me obligated to let her kill me? Because I probably would.
I'll just say it again: no one is empathizing with Issy. No one is considering that her premeditated attempted murdering mother's narcissistic victim-complex blog and multiple "woe is me" TV interviews etc might have marginally misrepresented anything about their interactions and the incomprehensibility of Issy's outbursts. Issy is just a "mentally ill" violent child who no one could do anything about, as if a child's violence arises in a vacuum without any causal influence from the world around her.
I'll put it another way - if Issy didn't have this label, "autistic", everyone would be asking "but why was she violent? she was really violent for no reason whatsoever? nothing about her home or family had any role in catalyzing this violence from a very young child?" But because she Issy has the label "autistic", 99% of people here have no problem othering her and believing her violence is solely a result of some biological, physical defect in her brain; nothing to do with her internal mental world (which is incomprehensible to us!) and the influence her clearly mentally ill attempted murdering mother and others had on Issy's world.
posted by crayz at 9:27 PM on September 9, 2013 [1 favorite]
Sure, she's my daughter, does that make me obligated to let her kill me? Because I probably would.
I'll just say it again: no one is empathizing with Issy. No one is considering that her premeditated attempted murdering mother's narcissistic victim-complex blog and multiple "woe is me" TV interviews etc might have marginally misrepresented anything about their interactions and the incomprehensibility of Issy's outbursts. Issy is just a "mentally ill" violent child who no one could do anything about, as if a child's violence arises in a vacuum without any causal influence from the world around her.
I'll put it another way - if Issy didn't have this label, "autistic", everyone would be asking "but why was she violent? she was really violent for no reason whatsoever? nothing about her home or family had any role in catalyzing this violence from a very young child?" But because she Issy has the label "autistic", 99% of people here have no problem othering her and believing her violence is solely a result of some biological, physical defect in her brain; nothing to do with her internal mental world (which is incomprehensible to us!) and the influence her clearly mentally ill attempted murdering mother and others had on Issy's world.
posted by crayz at 9:27 PM on September 9, 2013 [1 favorite]
Crayz, the discussion here is focusing on Kelli because she is the actor in the story and her motivations are the ones under discussion here. I don't think people lack empathy for Issy. I think people have a lot of empathy for her it just mostly goes without saying. I know that I feel terribly, terribly sorry for her. I feel even more sorry that she and her mother were left alone together after all that had happened in the past. I think that was madness quite frankly.
I'll put it another way - if Issy didn't have this label, "autistic", everyone would be asking "but why was she violent? she was really violent for no reason whatsoever? nothing about her home or family had any role in catalyzing this violence from a very young child?"
That's a fair point. I think most people are willing to accept her autism as an explanation because violence is an oft-discussed albeit extreme symptom of autism. Which is a common and much discussed mental disorder in the US. Plus there's nothing to indicate child abuse in any of the media coverage, the only allegations of child abuse I've seen are in this thread and they were made very emotionally, which people are inclined to discount.
posted by fshgrl at 12:06 AM on September 10, 2013 [3 favorites]
I'll put it another way - if Issy didn't have this label, "autistic", everyone would be asking "but why was she violent? she was really violent for no reason whatsoever? nothing about her home or family had any role in catalyzing this violence from a very young child?"
That's a fair point. I think most people are willing to accept her autism as an explanation because violence is an oft-discussed albeit extreme symptom of autism. Which is a common and much discussed mental disorder in the US. Plus there's nothing to indicate child abuse in any of the media coverage, the only allegations of child abuse I've seen are in this thread and they were made very emotionally, which people are inclined to discount.
posted by fshgrl at 12:06 AM on September 10, 2013 [3 favorites]
Having an internal mental world which drives you to harm others or yourself for reasons incomprehensible to outside observers is pretty much the definition of mental illness. Given that a six month residential program did not result in a disappearance of the issues (start goal: two minutes between violent episodes. end goal: five minutes between violent episodes), it is unlikely that her mother is the proximate cause and that Issy does in fact does have a biological, physical defect in her brain.
But again, I agree with you; Issy should have been committed and not in the family home.
posted by tavella at 12:14 AM on September 10, 2013 [5 favorites]
But again, I agree with you; Issy should have been committed and not in the family home.
posted by tavella at 12:14 AM on September 10, 2013 [5 favorites]
I understand the frustration at the seeming lack of sympathy for Issy and overwhelming support & sympathy for Kelli. I can't speak for others, but for me: It is not an either/or situation. Having sympathy for one does not mean that I lack sympathy for the other. For me, sympathizing with Issy is a no-brainer. She is a victim. 100%. She did nothing, NOTHING, to deserve this. No amount of hitting or hairpulling means that it is ok for her to be murdered. Sympathizing with an attempted murderer though? Yeah, that's not something I'm not generally inclined to do. It's different and unusual and, in some ways, difficult & troubling. Killing someone is wrong. You don't sympathize with someone who tried to kill someone. Or, well, I don't. But here I am doing it. That is noteworthy to me and, so, I'm inclined to mention it and not mention the obvious: my support of Issy.
What Kelli did was, absolutely and unequivocally, wrong. She attempted to murder her child.
Raising kids is hard. Raising disabled kids is harder. Raising kids, who for whatever reason, are frequently aggressive (to the point where a parent has been knocked unconscious and hospitalized on more than one occasion) is incredibly hard.
I'm not saying that to excuse what happened. There is no excuse. Kelli was wrong. But I can understand how she got to the point that she did.
I don't blame Issy. I'm not even sure I blame "the system" or "society"... I don't know who I blame, which is a bit frustrating in and of itself. All I know is that Issy deserved better help & support. And so did Kelli. And every other aggressively violent child & their parent(s).
Sympathizing with the mother does not, in any way, make what she did OK. It may, however, make folks a bit more inclined to support social services so that the other Kellis out there have an easier time finding the support & services that they need. And their children may benefit from it.
posted by imbri at 7:25 AM on September 10, 2013
What Kelli did was, absolutely and unequivocally, wrong. She attempted to murder her child.
Raising kids is hard. Raising disabled kids is harder. Raising kids, who for whatever reason, are frequently aggressive (to the point where a parent has been knocked unconscious and hospitalized on more than one occasion) is incredibly hard.
I'm not saying that to excuse what happened. There is no excuse. Kelli was wrong. But I can understand how she got to the point that she did.
I don't blame Issy. I'm not even sure I blame "the system" or "society"... I don't know who I blame, which is a bit frustrating in and of itself. All I know is that Issy deserved better help & support. And so did Kelli. And every other aggressively violent child & their parent(s).
Sympathizing with the mother does not, in any way, make what she did OK. It may, however, make folks a bit more inclined to support social services so that the other Kellis out there have an easier time finding the support & services that they need. And their children may benefit from it.
posted by imbri at 7:25 AM on September 10, 2013
I'll put it another way - if Issy didn't have this label, "autistic", everyone would be asking "but why was she violent? she was really violent for no reason whatsoever? nothing about her home or family had any role in catalyzing this violence from a very young child?"
I have a close friend who works with violent autistic kids; their violence is not caused by anything except their condition, and it's terrifyingly hard to control, especially as they get older. The answer to "why was she violent" was because she was born with a tragic combination of brain chemicals. In fact, the answer to "Why did her mother try to kill her?" may well have been that her mother had brain damage from Issy's repeated beatings. Your attempts to blame the parents for having a child with a severe birth defect are gross.
If she was not violent because of an uncontrollable mixture of brain chemicals, her repeated battery of her mother and sisters would get her locked up in jail. Which maybe would have been better for everyone.
posted by ThatFuzzyBastard at 8:05 AM on September 10, 2013 [2 favorites]
I have a close friend who works with violent autistic kids; their violence is not caused by anything except their condition, and it's terrifyingly hard to control, especially as they get older. The answer to "why was she violent" was because she was born with a tragic combination of brain chemicals. In fact, the answer to "Why did her mother try to kill her?" may well have been that her mother had brain damage from Issy's repeated beatings. Your attempts to blame the parents for having a child with a severe birth defect are gross.
If she was not violent because of an uncontrollable mixture of brain chemicals, her repeated battery of her mother and sisters would get her locked up in jail. Which maybe would have been better for everyone.
posted by ThatFuzzyBastard at 8:05 AM on September 10, 2013 [2 favorites]
I have a close friend who works with violent autistic kids; their violence is not caused by anything except their condition, and it's terrifyingly hard to control...In fact, the answer to "Why did her mother try to kill her?" may well have been that her mother had brain damage from Issy's repeated beatings. Your attempts to blame the parents for having a child with a severe birth defect are gross.
While I am in agreement that randomly theorizing, with no evidence thus far to back it up, that the blame for Issy's violence can be laid directly at the feet of the parents is extremely out of line, I would argue that so too is making Internet diagnoses (even when qualified with "maybe") of irreparable brain damage (and what specifically caused it) or using the anecdotal evidence of "a close friend" as an appeal to authority of scientific fact.
posted by The Gooch at 9:18 AM on September 10, 2013
While I am in agreement that randomly theorizing, with no evidence thus far to back it up, that the blame for Issy's violence can be laid directly at the feet of the parents is extremely out of line, I would argue that so too is making Internet diagnoses (even when qualified with "maybe") of irreparable brain damage (and what specifically caused it) or using the anecdotal evidence of "a close friend" as an appeal to authority of scientific fact.
posted by The Gooch at 9:18 AM on September 10, 2013
Anyone still skeptical and thinking that Kelli isn't getting extra sympathy because of Issy's autism should compare the comments in this thread to these.
posted by prefpara at 9:49 AM on September 10, 2013 [1 favorite]
posted by prefpara at 9:49 AM on September 10, 2013 [1 favorite]
Prefpara, Kelli is getting more sympathy than the horrific "re-homing" adoptive parents because Kelli tried to kill herself alongside her daughter. If you cannot see the stark difference between her situation and people who think their children are so disposable that they are willing to give them away to random strangers on the internet and then blithely carry on with their lives, I don't really know what to say to you.
posted by moonlight on vermont at 12:03 PM on September 10, 2013 [1 favorite]
posted by moonlight on vermont at 12:03 PM on September 10, 2013 [1 favorite]
The Gooch: That "may" is there for a reason. Kelli was repeatedly beaten badly enough to require hospitalization, and those beatings involved visible facial trauma. It's certainly possible to endure repeated head trauma with no ill effects on the brain, but it's also entirely possible to suffer at least mild brain damage.
As for my reference to "a close friend", that was just to clarify, for anyone who was taking crayz's post to heart, that violence caused by autism is not some wacky alibi that Kelli made up, but something that happens to lots of people.
posted by ThatFuzzyBastard at 12:29 PM on September 10, 2013 [2 favorites]
As for my reference to "a close friend", that was just to clarify, for anyone who was taking crayz's post to heart, that violence caused by autism is not some wacky alibi that Kelli made up, but something that happens to lots of people.
posted by ThatFuzzyBastard at 12:29 PM on September 10, 2013 [2 favorites]
if Issy didn't have this label, "autistic", everyone would be asking "but why was she violent? she was really violent for no reason whatsoever? nothing about her home or family had any role in catalyzing this violence from a very young child?"
Are you asking if Issy's parents were abusive? There's no evidence of that, and abusive parents don't usually end up being repeatedly hospitalized.
posted by Pruitt-Igoe at 12:49 PM on September 10, 2013 [2 favorites]
Are you asking if Issy's parents were abusive? There's no evidence of that, and abusive parents don't usually end up being repeatedly hospitalized.
posted by Pruitt-Igoe at 12:49 PM on September 10, 2013 [2 favorites]
moonlight, I agree with you that Kelli's attempted suicide is one of the reasons she is receiving some sympathy, but I don't think it's the only reason for the contrasting reactions.
posted by prefpara at 1:54 PM on September 10, 2013
posted by prefpara at 1:54 PM on September 10, 2013
No one is considering that her premeditated attempted murdering mother's narcissistic victim-complex blog and multiple "woe is me" TV interviews etc might have marginally misrepresented anything about their interactions and the incomprehensibility of Issy's outbursts
If there's one thing I learned as the sister of two siblings living with disability, it's that under no circumstances must a parent (or other family member) ever, ever, ever publicly say anything that suggests living with a child with a profound disability might be difficult. It must always be presented as a joy, an opportunity at self-actualization, a blessing from On High; you wouldn't change a thing, and if the magic pill came along to cure your child, you would turn away from it with righteous disgust.
Because if you do say those things, you see, you're clearly a monster who doesn't love your child. You don't have your child's best interests at heart. You're selfish for expressing the feelings that are chewing at your insides like the shark from Jaws, and for reminding folks that life with profound disability doesn't always turn out like an ABC Afterschool Special.
You're not managing your considerable stress by venting. You're not looking to commiserate with other people in similar situations. Nope, you obviously think your child isn't even human, and therefore not worthy of being cared for properly.
You don't dare talk about the suffocating isolation, the horrific expense, the non-stop war with bureaucracy for resources and assistance, the physical destruction of your home, the PTSD that's eroding your sanity. And may God damn you straight to Hell if you actually have the nerve to suggest that your life, and the life of your child, would be better if your child wasn't profoundly disabled.
Your job, as the parent, is not only to do every possible thing for your child, but to maintain the illusion to the general population that families like yours don't exist. They don't want to know that medically complicated kids like Issy are out there. They don't want to hear about the collateral damage caused by the disability.
Even other people who live with disabilities, people you would think would understand and sympathize, don't want to hear it. But they'll sure as shit tell you how you're wrong. And you listen, because they have a disability and you don't, so you figure they have insight that you don't. You try to learn. But you find out really quickly that they don't want to hear about your kid's particular issues. They take their own issues and abilities, assume that they're universal, and shout you down when you point out that your kid's circumstances are very different. They treat you with contempt, because to suggest that the profound disability is at fault is anathema, so anything not going well in your child's life is clearly your fault. You learn quickly that they will always side with the disabled person; the non-disabled person--even a parent pulling apart her life so that her child can have one--is the enemy, pure and simple, if she speaks ill of the disability. Because speaking ill of the disability is to speak ill of your child and of them.
And even when you take pains to point out that your problems are a hill of beans compared to the sheer insanity of what your child is going through, it becomes very clear very quickly that they don't want to to hear about any versions of their disabilities that can cause disruption or violence. You can't blame them, really, since the general population's perception of disability makes life hard enough as it is. But it still hurts when they treat you like you're a traitor to the cause, and accuse you of constantly blaming your own unhappiness on your kid, just because you try to tell the truth so you can get some help.
Yes, the problem is you, the parent. You're weak, for not being able to take the physical stress. You're stupid, for not completely understanding your child. You're selfish, because you want the soul-crushing despair to end. And you're hateful, because if you really loved your child, you'd shut the ever-loving fuck up and keep pretending that everything's okay.
And the more profound your child's disability, the more this is required of you. Especially if you're the Mom.
The worst part about this social pressure to shut up is that people then look at you with astonishment when you say you need help. How can you need help? There's plenty of resources. Besides, this person over here has the same disability, and he gets along fine. And others says you're bitter and self-centered and you have a victim complex and you hate your disabled child....
Some parents are able to persevere, in spite of all of this. Others aren't. You may find yourself one day ground down into the dust, no longer possessing the emotional fortitude to go to war with the people you thought would help, no longer physically capable of holding the disability at bay. And when you look at what's out there for your child's future, all you can see is refusal of placement in group homes, your child locked away somewhere, no advocate, no one caring, maybe even abused.
That's when you start to think like Margaret Garner, that it's better for your child to die in the arms of a loving parent, than to die alone and forgotten after enduring years of maltreatment....
It's your fault. It will always be your fault, now and forever more. People have to have someone to blame, and they long ago decided to blame you, the parent. They certainly aren't going to stop blaming you now, just because you were egotistical enough to allow yourself to be swallowed whole by the anguish. You tried to murder your child, these people who will never be taking care of your child say. It's your fault.
posted by magstheaxe at 4:16 PM on September 10, 2013 [56 favorites]
If there's one thing I learned as the sister of two siblings living with disability, it's that under no circumstances must a parent (or other family member) ever, ever, ever publicly say anything that suggests living with a child with a profound disability might be difficult. It must always be presented as a joy, an opportunity at self-actualization, a blessing from On High; you wouldn't change a thing, and if the magic pill came along to cure your child, you would turn away from it with righteous disgust.
Because if you do say those things, you see, you're clearly a monster who doesn't love your child. You don't have your child's best interests at heart. You're selfish for expressing the feelings that are chewing at your insides like the shark from Jaws, and for reminding folks that life with profound disability doesn't always turn out like an ABC Afterschool Special.
You're not managing your considerable stress by venting. You're not looking to commiserate with other people in similar situations. Nope, you obviously think your child isn't even human, and therefore not worthy of being cared for properly.
You don't dare talk about the suffocating isolation, the horrific expense, the non-stop war with bureaucracy for resources and assistance, the physical destruction of your home, the PTSD that's eroding your sanity. And may God damn you straight to Hell if you actually have the nerve to suggest that your life, and the life of your child, would be better if your child wasn't profoundly disabled.
Your job, as the parent, is not only to do every possible thing for your child, but to maintain the illusion to the general population that families like yours don't exist. They don't want to know that medically complicated kids like Issy are out there. They don't want to hear about the collateral damage caused by the disability.
Even other people who live with disabilities, people you would think would understand and sympathize, don't want to hear it. But they'll sure as shit tell you how you're wrong. And you listen, because they have a disability and you don't, so you figure they have insight that you don't. You try to learn. But you find out really quickly that they don't want to hear about your kid's particular issues. They take their own issues and abilities, assume that they're universal, and shout you down when you point out that your kid's circumstances are very different. They treat you with contempt, because to suggest that the profound disability is at fault is anathema, so anything not going well in your child's life is clearly your fault. You learn quickly that they will always side with the disabled person; the non-disabled person--even a parent pulling apart her life so that her child can have one--is the enemy, pure and simple, if she speaks ill of the disability. Because speaking ill of the disability is to speak ill of your child and of them.
And even when you take pains to point out that your problems are a hill of beans compared to the sheer insanity of what your child is going through, it becomes very clear very quickly that they don't want to to hear about any versions of their disabilities that can cause disruption or violence. You can't blame them, really, since the general population's perception of disability makes life hard enough as it is. But it still hurts when they treat you like you're a traitor to the cause, and accuse you of constantly blaming your own unhappiness on your kid, just because you try to tell the truth so you can get some help.
Yes, the problem is you, the parent. You're weak, for not being able to take the physical stress. You're stupid, for not completely understanding your child. You're selfish, because you want the soul-crushing despair to end. And you're hateful, because if you really loved your child, you'd shut the ever-loving fuck up and keep pretending that everything's okay.
And the more profound your child's disability, the more this is required of you. Especially if you're the Mom.
The worst part about this social pressure to shut up is that people then look at you with astonishment when you say you need help. How can you need help? There's plenty of resources. Besides, this person over here has the same disability, and he gets along fine. And others says you're bitter and self-centered and you have a victim complex and you hate your disabled child....
Some parents are able to persevere, in spite of all of this. Others aren't. You may find yourself one day ground down into the dust, no longer possessing the emotional fortitude to go to war with the people you thought would help, no longer physically capable of holding the disability at bay. And when you look at what's out there for your child's future, all you can see is refusal of placement in group homes, your child locked away somewhere, no advocate, no one caring, maybe even abused.
That's when you start to think like Margaret Garner, that it's better for your child to die in the arms of a loving parent, than to die alone and forgotten after enduring years of maltreatment....
It's your fault. It will always be your fault, now and forever more. People have to have someone to blame, and they long ago decided to blame you, the parent. They certainly aren't going to stop blaming you now, just because you were egotistical enough to allow yourself to be swallowed whole by the anguish. You tried to murder your child, these people who will never be taking care of your child say. It's your fault.
posted by magstheaxe at 4:16 PM on September 10, 2013 [56 favorites]
There are times I wish I could favorite something a dozen times.
posted by tavella at 4:26 PM on September 10, 2013 [3 favorites]
posted by tavella at 4:26 PM on September 10, 2013 [3 favorites]
magstheaxe, that may be one of the most profound things I've ever read in my score of years on the internet. I wish I could make everyone read it and grok it.
posted by dejah420 at 5:06 PM on September 10, 2013 [4 favorites]
posted by dejah420 at 5:06 PM on September 10, 2013 [4 favorites]
magstheaxe, I have never seen these sentiments so well articulated. Thank you so much. I can only hope that some of those who have the attitudes you describe will recognize themselves and the pain they cause to parents of kids with disabilities. Would that what you've written gain as much traction and popularity as that goddamn Holland bullshit. Because often, it's more like Afghanistan.
posted by Wordwoman at 5:39 PM on September 10, 2013 [5 favorites]
posted by Wordwoman at 5:39 PM on September 10, 2013 [5 favorites]
magstheaxe - your (very powerful) comment seems unnecessarily narrow. Surely all that same stuff is true for the vast majority of parents, to some extent? It is verboten, in the US, for ANY parent to admit that their child is a burden - that they need more help. Combined with the stigma against mental health problems like depression, we often see mothers and fathers pushed past their breaking point ("...the US has the highest rates of child homicide (8.0/100,000 for infants, 2.5/100,000 for preschool-age children, and 1.5/100,000 for school-age children)").
Why do we have more sympathy for Kelli Stapleton than for the other 700-ish parents who murdered their school-aged children in the past year (not even counting attempted murder)? Because she let us peek in her world and the others didn't? Because we believe in an eye for an eye, and Issy was visibly violent?
posted by muddgirl at 6:06 PM on September 10, 2013 [1 favorite]
Why do we have more sympathy for Kelli Stapleton than for the other 700-ish parents who murdered their school-aged children in the past year (not even counting attempted murder)? Because she let us peek in her world and the others didn't? Because we believe in an eye for an eye, and Issy was visibly violent?
posted by muddgirl at 6:06 PM on September 10, 2013 [1 favorite]
Why do we have more sympathy for Kelli Stapleton than for the other 700-ish parents who murdered their school-aged children in the past year (not even counting attempted murder)? Because she let us peek in her world and the others didn't? Because we believe in an eye for an eye, and Issy was visibly violent?
posted by muddgirl at 9:06 PM on September 10
I don't know the "we" you're referring to, but my comments are specific to the topic of this thread: Kelli Stapleton, the events that brought her to Metafilter's attention, and parents of profoundly disabled children living in circumstances similar to Ms. Stapleton's.
This doesn't mean I'm not sympathetic to "the vast majority of parents". It's just in this thread, we're aren't talking about the vast majority of parents.
Your link would be an excellent FPP, and if you start one on the topic, I'll be happy to share my thoughts in that thread.
posted by magstheaxe at 8:56 PM on September 10, 2013 [4 favorites]
posted by muddgirl at 9:06 PM on September 10
I don't know the "we" you're referring to, but my comments are specific to the topic of this thread: Kelli Stapleton, the events that brought her to Metafilter's attention, and parents of profoundly disabled children living in circumstances similar to Ms. Stapleton's.
This doesn't mean I'm not sympathetic to "the vast majority of parents". It's just in this thread, we're aren't talking about the vast majority of parents.
Your link would be an excellent FPP, and if you start one on the topic, I'll be happy to share my thoughts in that thread.
posted by magstheaxe at 8:56 PM on September 10, 2013 [4 favorites]
...Would that what you've written gain as much traction and popularity as that goddamn Holland bullshit. Because often, it's more like Afghanistan.
posted by Wordwoman at 8:39 PM on September 10
I was glad to discover a few years back that there are parents of disabled children who also are not crazy about Emily Kingsley's Welcome To Holland essay:
* Welcome To Beirut by Susan F. Rzucidlo
* Amsterdam International by Dana Nieder (Emily Kingsley, author of Welcome to Holland, actually responded to this one)
* Holland, Schmolland by Laura Kreuger Crawford
* Planet Autism, an article written for Salon.com by Scot Sea. In his essay, Sea mentions the case of Delfin Bartolome, who in 2002 shot to death his 27-year-old autistic son, Dale, and then himself.
And I'm glad to see that more people are getting their stories out there, like Dave Royoko and Jessica Charles and Robert Naseef.
It's my hope that more parents (and other caregivers) will share their stories, and get attention so they and their kids can get real, substantive help.
posted by magstheaxe at 9:49 PM on September 10, 2013 [7 favorites]
posted by Wordwoman at 8:39 PM on September 10
I was glad to discover a few years back that there are parents of disabled children who also are not crazy about Emily Kingsley's Welcome To Holland essay:
* Welcome To Beirut by Susan F. Rzucidlo
* Amsterdam International by Dana Nieder (Emily Kingsley, author of Welcome to Holland, actually responded to this one)
* Holland, Schmolland by Laura Kreuger Crawford
* Planet Autism, an article written for Salon.com by Scot Sea. In his essay, Sea mentions the case of Delfin Bartolome, who in 2002 shot to death his 27-year-old autistic son, Dale, and then himself.
And I'm glad to see that more people are getting their stories out there, like Dave Royoko and Jessica Charles and Robert Naseef.
It's my hope that more parents (and other caregivers) will share their stories, and get attention so they and their kids can get real, substantive help.
posted by magstheaxe at 9:49 PM on September 10, 2013 [7 favorites]
I don't think my sense that complete despair and terror of the future are not hard to understand in the context of caring for and living with a child who is frequently, randomly, senselessly, brutally, and permanently violent towards you and your other children has anything to do with believing in "an eye for an eye". That implies that this attempted murder-suicide was about vengeance, and I have trouble even beginning to see it that way.
Yes, people often have dark biases that inform and misinform our moral intuitions, but that doesn't make us totally incapable of legitimate value judgements based on specific circumstances. Many of us actually are inclined to feel for other parents who have killed their children in apparently desperate situations, anyway. I think that tends to happen whenever people take the isolation and intense pressures of being a primary caregiver seriously.
posted by two or three cars parked under the stars at 6:43 AM on September 11, 2013 [3 favorites]
Yes, people often have dark biases that inform and misinform our moral intuitions, but that doesn't make us totally incapable of legitimate value judgements based on specific circumstances. Many of us actually are inclined to feel for other parents who have killed their children in apparently desperate situations, anyway. I think that tends to happen whenever people take the isolation and intense pressures of being a primary caregiver seriously.
posted by two or three cars parked under the stars at 6:43 AM on September 11, 2013 [3 favorites]
Wordwoman: What are you talking about? If you'll read the thread, you might notice that the people who understand this best are the parents of disabled children, the very ones who fight tooth and nail for their kids to get services. I was one too, and I completely understand the despair that led up to this tragedy in a way that eludes you completely. How about listening instead of setting up straw men?
This website and this thread? Sure, people have been very thoughtful and compassionate. The comment sections of other websites? No so much. I'm also relating the things people have said to my face when they don't know that I have a disabled kid, AND the things they have said when they do.
I'm talking about, for example, things that were said at the PTO meeting at my kid's school two weeks ago when other parents tried to take away the very, very small fund (1K out of 100K+ in yearly fundraising proceeds) that's put aside to cover expenses in the SpEd program. "Why does this school have to have an Inclusion Program? I don't want my kids to have to go to school with kids like that." Yes, that is a thing that was said in my normally very liberal, supposedly progressive city, in this day and age. Don't even get me started on the issues that went on with the administration last school year, or the things have been going on with SpEd specialists for the last two school years.
SO ... how about YOU listen once you've managed to get down from your high fucking horse?
posted by echolalia67 at 5:10 PM on September 11, 2013
This website and this thread? Sure, people have been very thoughtful and compassionate. The comment sections of other websites? No so much. I'm also relating the things people have said to my face when they don't know that I have a disabled kid, AND the things they have said when they do.
I'm talking about, for example, things that were said at the PTO meeting at my kid's school two weeks ago when other parents tried to take away the very, very small fund (1K out of 100K+ in yearly fundraising proceeds) that's put aside to cover expenses in the SpEd program. "Why does this school have to have an Inclusion Program? I don't want my kids to have to go to school with kids like that." Yes, that is a thing that was said in my normally very liberal, supposedly progressive city, in this day and age. Don't even get me started on the issues that went on with the administration last school year, or the things have been going on with SpEd specialists for the last two school years.
SO ... how about YOU listen once you've managed to get down from your high fucking horse?
posted by echolalia67 at 5:10 PM on September 11, 2013
Why do we have more sympathy for Kelli Stapleton than for the other 700-ish parents who murdered their school-aged children in the past year (not even counting attempted murder)? Because she let us peek in her world and the others didn't? Because we believe in an eye for an eye, and Issy was visibly violent?
you've never dealt with an autistic child in full meltdown mode, have you?
posted by pyramid termite at 5:38 PM on September 11, 2013 [3 favorites]
you've never dealt with an autistic child in full meltdown mode, have you?
posted by pyramid termite at 5:38 PM on September 11, 2013 [3 favorites]
Follow-up news stories:
Autistic girl makes ‘miracle’ recovery after alleged murder-suicide attempt by mom
Fourteen-year-old Issy Stapleton, a violently autistic child whose mother allegedly tried to kill her in a botched murder-suicide attempt, is now walking, talking and smiling.
According to a family Facebook post, the girl’s recovery “is nothing short of a miracle,” her father, Matt, wrote Monday.
She was removed from life support Friday in the intensive care unit of Helen DeVos Children’s Hospital in Grand Rapids, Mich., where doctors concluded she had suffered brain damage and was unable to breathe on her own.
After her ventilator was turned off, Issy began breathing. By Saturday, she was awake, asking questions and “showing signs of the incredible young woman she is,” her dad wrote....
Karmel Puzzuoli - Autism families empathize:
"It used to be that children with the severe challenges were sent away to be institutionalized in facilities with cold tile floors and yellow brick walls, which was certainly not a compassionate solution for them.
"But now, families are alone to manage their child’s problems in isolation. In order to survive, the whole family must institutionalize itself, which means alienation from community, family and friends.
"To get relief from a child’s escalating behavior, an autism family must have an emergency.
It doesn’t matter if a child is becoming progressively unmanageable. The community mental health system functions on crisis"
Kelli Stapleton supporters help legal defense in alleged poisoning of autistic daughter, herself:
Supporters of Kelli Stapleton, the Northern Michigan woman accused of trying to kill her autistic daughter and herself, are raising funds for her legal defense...Her friends are trying to raise $25,000 for a defense fund. They have raised $1,270 since announcing the fund late Sunday night on her blog, “the status woe.”
Report: After years of frustration, Kelli Stapleton wanted to take autistic daughter 'to heaven'
A state police detective said Kelli Stapleton, the woman accused of trying to kill her autistic daughter and herself, was at her “wit’s end” and thought it best for her family if both “went to heaven,” UpNorthLive.com reported on Thursday, Sept. 26.
Stapleton told workers at Munson Medical Center “that she intended to kill her daughter and commit suicide and it was basically because of all of the years of frustration with her daughter’s autism and her behavior,” Detective Rick Sekely said in obtaining a warrant, UpNorthLive.com said.
He noted that she talked of her daughter’s violence toward her. She was "...kind of at her wit's end and thought this would be the best solution for the family, her husband and her other two kids at home, was that if Issy and her went to heaven,” the report said.
Report: State trying to terminate parental rights of Kelli Stapleton, accused of trying to kill autistic daughter, herself
The mother accused of attempting to kill her teenage daughter and herself is facing a petition from the Department of Human Services.
The department is looking to take jurisdiction of Isabelle and her two siblings from Kelli Stapleton. They are not requesting the removal of the children from the father. Matt Stapleton has filed for both physical and legal custody of the children
This is descending into a nightmare for the Stapleton family. My heart just bleeds for everyone involved.
posted by magstheaxe at 3:24 PM on September 30, 2013 [2 favorites]
Autistic girl makes ‘miracle’ recovery after alleged murder-suicide attempt by mom
Fourteen-year-old Issy Stapleton, a violently autistic child whose mother allegedly tried to kill her in a botched murder-suicide attempt, is now walking, talking and smiling.
According to a family Facebook post, the girl’s recovery “is nothing short of a miracle,” her father, Matt, wrote Monday.
She was removed from life support Friday in the intensive care unit of Helen DeVos Children’s Hospital in Grand Rapids, Mich., where doctors concluded she had suffered brain damage and was unable to breathe on her own.
After her ventilator was turned off, Issy began breathing. By Saturday, she was awake, asking questions and “showing signs of the incredible young woman she is,” her dad wrote....
Karmel Puzzuoli - Autism families empathize:
"It used to be that children with the severe challenges were sent away to be institutionalized in facilities with cold tile floors and yellow brick walls, which was certainly not a compassionate solution for them.
"But now, families are alone to manage their child’s problems in isolation. In order to survive, the whole family must institutionalize itself, which means alienation from community, family and friends.
"To get relief from a child’s escalating behavior, an autism family must have an emergency.
It doesn’t matter if a child is becoming progressively unmanageable. The community mental health system functions on crisis"
Kelli Stapleton supporters help legal defense in alleged poisoning of autistic daughter, herself:
Supporters of Kelli Stapleton, the Northern Michigan woman accused of trying to kill her autistic daughter and herself, are raising funds for her legal defense...Her friends are trying to raise $25,000 for a defense fund. They have raised $1,270 since announcing the fund late Sunday night on her blog, “the status woe.”
Report: After years of frustration, Kelli Stapleton wanted to take autistic daughter 'to heaven'
A state police detective said Kelli Stapleton, the woman accused of trying to kill her autistic daughter and herself, was at her “wit’s end” and thought it best for her family if both “went to heaven,” UpNorthLive.com reported on Thursday, Sept. 26.
Stapleton told workers at Munson Medical Center “that she intended to kill her daughter and commit suicide and it was basically because of all of the years of frustration with her daughter’s autism and her behavior,” Detective Rick Sekely said in obtaining a warrant, UpNorthLive.com said.
He noted that she talked of her daughter’s violence toward her. She was "...kind of at her wit's end and thought this would be the best solution for the family, her husband and her other two kids at home, was that if Issy and her went to heaven,” the report said.
Report: State trying to terminate parental rights of Kelli Stapleton, accused of trying to kill autistic daughter, herself
The mother accused of attempting to kill her teenage daughter and herself is facing a petition from the Department of Human Services.
The department is looking to take jurisdiction of Isabelle and her two siblings from Kelli Stapleton. They are not requesting the removal of the children from the father. Matt Stapleton has filed for both physical and legal custody of the children
This is descending into a nightmare for the Stapleton family. My heart just bleeds for everyone involved.
posted by magstheaxe at 3:24 PM on September 30, 2013 [2 favorites]
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My heart goes out to everyone involved. What a sad, sad situation.
posted by magstheaxe at 3:08 PM on September 7, 2013 [5 favorites]