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Right now I'm reading a Mario Puzo book called The Last Don. There is an autistic child in the book. He kept stating things like, "She cannot love, she doesn't care about you." How can they know? How can they understand things in the perspective of a person with Autism if they do not have it or want to really put themselves in their position? Just look at the difference between the way people with autism percieve themselves and the way people who don't have it and think it is something that needs to be irradicated: http://www.cureautismnow.org/site/c.bhLOK2PILuF/b.1311643/k.98D1/FAQs_About_Autism.htm This site in its FAQ talks about how parents will have to put away their hopes and dreams for theirl child. How do they know this? There are a lot of factors to consider. http://www.autistics.org/library/ Here are autistic people talking about what it's like to have autism. One guy (or girl) talked about beign tormented and banged against the wall by his father just for stimming. Why is it such a bad thing if he wants to rock back and forth? Who even really cares? Back in the old days if a person was left handed they kept switching the pencil to their right hand. I never understand why. I think people need to let go of a certain concept of normality. It makes life harder for people who cannot completely fit into it. I am not against teaching people the skills they need to get along in society. I am against this idea that everyone must behave in the same way. You see this same attitude when it comes to homosexuality and it gets in the way of understanding people completely. Parents upon finding out that their child is gay will most of the time reject that child and mourn because their idea of a normal life for him or her has been shattered. This really isn't helpful to the person at all, especially when people try to be cured, try to do what is expected of them and just can't. Is it possible for people to learn to treat people who are different with compassion and to really understand them? Usually the only way to do this is to read their words or listen to their story in their perspective as people get too mired in their own perspective to see outside of it.
This would be a lot clearer if I was not writing it at work during lunch.
Posts: 9942 | Registered: Mar 2003
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quote:This site in its FAQ talks about how parents will have to put away their hopes and dreams for theirl child. How do they know this?
Hmm... haven't read the site, but we have a very close friend who has two boys who suffer from varying degrees of autism.
In addition, my wife has worked extensively with autistic youth and adults; and my mom worked with autistic elementary school students.
So, I've got a lot of second-hand, anecdotal evidence on this subject.
Parents of autistic children have to find new dreams for their children. That doesn't mean they love them less. One mom compared it to planning a trip to Italy, and then being stranded in Holland. After a while you realize that Holland's a nice place, too. It's not what you wanted, it's not what you expected... but there are tulips. And Rembrandts. And windmills. And the people are nice. And so life goes on in Holland, even though all the time, you're hearing from people who went to Italy, how great Italy is, and you will always remember that you were supposed to go there, too...
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Also having a fair amount of second hand experience babysitting autistic children and helping my mom run the special education department in our local ISD, I would agree with Scott. There are certain hopes and dreams that a parent of a healthy child can have that are not realistic for a parent of an autistic child. This, of course, depends on the degree of the autism.
Also, I believe it is very important for the family and teachers of the autistic child to focus a great deal of attention curing what they can of the affliction. It isn't something like being homosexual, that is viewed by some as a sociatal infliction, but is a desease the we don't fully understand yet. But if you work really hard at helping and trying to cure, and trying to make an autistic person "normal," their life can/will be the better for it.
From all that I have gathered from autistic children and adults, it is not something that they can comfortably live with (again, depending on severity). It can be a constant anguish not to be able to communicate effectively, or at all with the people that you love.
Having said that, I completely agree with you that it is a terrible thing when a person views an autistic child, especially their own, as if they were less than human, or that they are somehow less intelligent. Autism is almost completely about being able to communicate, and if you can help an autistic person communicate like us normies, I'm sure they would use that communication to thank you profusely.
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The mom in question wrote an essay called 'Welcome to Holland.' Here's the pertinent text:
(FYI, I don't know this lady, but since my family's always had close ties to autistic/special needs kids, it's been on my radar for a while)
quote:“It’s like this … When you’re going to have a child, it’s like planning a fabulous vacation trip—to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
“After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, ‘Welcome to Holland.’
“ ‘Holland?!?’ you say. ‘What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.’
“But there’s been a change in the flight plan. You’ve landed in Holland and there you must stay.
“The important thing is … they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place.
“So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
“It’s just a different place. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.
“But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’
“But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.” ------Emily Perl Kingsley
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It's a beautiful essay, and I still cry every time I read it. And I think it must be over 15 years since I first read it in Dear Abby!
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It's important to remember that "Autism" is a spectrum of conditions, not a specific malady that is the same in everyone that exhibits those traits.
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I'm at work and can't respond to this as much as I'd like. Scott, I'd really like to read the full text of that article if you could tell me where I can get my hands on it. I'm not sure if it's a dead ringer for how I feel about the matter but it's an interesting point of view.
Somehow I am managing to agree with both Vonk and Synesthesia, but I'll have to wait until later to sort that mess out . As a parent of an autistic kid I've spend years trying to maintain a comfortable balance between acceptance and conformity. I believe more education and research is a wonderful thing but my daughter is not a science experiment and I'm only willing to go so far to 'cure' her when, as others in this thread have already said, we don't know very much about autism. Oftentimes the articles and studies I've read feel like shots in the dark. There are good ideas out there for certain, and interesting theories as far as what autism is and what causes it, but I think it would be a lot easier to have a discussion about how much we should just accept and how much can be fixed if we had...any idea.
To be fair, I do think we are headed in a positive direction as far as diagnostics and treatment. I suppose it can feel like the plane has landed and no one can really tell you where the heck you are, to borrow the Holland analogy, but I imagine parents of autistic children don't have a monopoly on that lost feeling.
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It's hard to sort out my thoughts on this one, since there are so many. My experiences and ties as a paraprofessional and professional go back about 25 years...
But it also runs deeper than that. I am not what is referred to as "neurotypical" - and the label I'd have if I was a kid in school now is something that is considered within a stone's throw of Aspergers. Not surprisingly, some of my most rewarding friendships over the years have been with folks who have the Aspergers label.
I prefer the "autism-friendly" sites myself. Here are a few that I read regularly...
Autism Vox and Autism Land are blogs both written by Kristina Chew, who is the mother of a young man with autism.
Ballastexistenz is a blog written by an autistic woman whose thoughts on all things related to disability are absolutely fascinating.
These are the voices that don't get heard over the "autism is a plague," "autism robs you of your child," etc. voices. And these voices can get pretty ugly.
Disclaimer: As a result of one of the nastier and uglier aspects of the "autism needs to be obliterated" rhetoric, I am pretty much on the permanent fecal roster of the Illinois Autism Society.
Those who are curious can read about it here and (please access this one after the first link) here. There is even more available from this site.Posts: 4344 | Registered: Mar 2003
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As for curing/not curing-- I'm a big supporter of parents' and patients' determining their treatment options, if possible.
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sndrake, I browsed your linkage and found Ballastexistenz of particular interest, particularly her take on what a cure would mean for her both physically and mentally. I do think it's a little different when you're dealing with children, especially before certain patterns have been set. Another reason why I believe early diagnosis is a good and helpful thing.
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being able to appreciate the fact that there are beautiful people like Mike McCarron in the world has been one of the real unqualified pluses in a year with more than its share of ugliness, pain and strangeness. He, his wife, and his son cared for Katie McCarron - they are the ones whose praises should have been sung. Instead, the media and "advocacy" groups built a case for virtual sainthood for the mother accused of killing this little girl.
Apropo to the subject and sure to be loved by some and hated by others, there's this classic, which I remember well from a different chapter in my life:
quote:Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.
This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say,
"I wish my child did not have autism,"
what they're really saying is,
"I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
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Stephen, I'm going to ask you for some research leads on something, hopefully in the next 3 months.
I'm thinking of a philosophical/legal paper on the idea of mitigating an offenses severity based on victim atrributes is can be representative of harm/discrimination/lesser-valuing of the types of people who's happen to have the attribute that leads to mitigation.
I'm going to focus more on the substantive definitions of crime rather than the procedural aspects of under-enforcement in certain neighborhoods, although crime selection at time of charging by prosecutors will come in to it.
The idea was inspired by your recounting of the Canada circumstances over a year ago, but it's gotten broader. For example, we tend to punish and grade crimes more severly when committed against police officers, children, pregnant women, and people we consider less capable of defending themselves (the old couple getting mugged is almost a cliche of this type of thing). Disability is a huge exception to the helplessness rule, though, assuming the perpetrator is a loved one or guardian.
My paper is going to be larger than the disability issue, but I'm interested in the feedback loop of laws affecting ideas of value.
However, last time I asked for help, I got too busy to follow through, so this time I'm going to wait until I'm actually moving on it to ask for what I need. Posts: 26071 | Registered: Oct 2003
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quote:Originally posted by Synesthesia: Parents upon finding out that their child is gay will most of the time reject that child and mourn
Not to take away from this discussion, but I'd like to object to this bit. Most of the time? In my experience with friends and relatives who have come out, this is just not true. Maybe it is true some of the time. But I really doubt that it is true most of the time.
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I do not think what you say is entirely correct. I, personally, have gotten "mixed diagnosis" of Asperger's as a semi-adult (when I was a late teen) Some doctors identified it, others did not, and at that time I was already done with my education, so saw no reason to pursue the matter, I was who I was.
That being said, who I AM is a person with behavior patterns that often make life more difficult. If I had been diagnosed earlier, the "work arounds" to live a full life in our society would have been easier. Yes, you should respect Autistic people, but if you can help them move around society more easily, then in the long run, that is a GOOD thing for them. I am not saying I agree with hitting the children, or shocking them for stimulation, but reasonable therapy methods are a good thing. If given a choice as an adult, I'm sure the person would RATHER be able to be more productive (if they could have been) than sit around on disability thinking about clouds for the rest of their lives.
It's analogous to children born with physical deformities or growth problems. We treat THEM don't we. We give them medicines, and even surgeries and painful therapies to help them get to a point where they can function better. You never will erase the autism inside a child, it will always color the experience, but you CAN give them ways to cope with the autism so that they can FUNCTION more normally. It's like when a child is born deaf or blind. Unless you are very lucky, there is probably no way you will ever be able to let your child hear or see, and being deaf or blind will mean that their entire experience in life is colored by that disability, often enhancing other abilities. However, you can treat those children with therapy, lip reading, vocal training, braille, etc to give them TOOLS to help them in the rest of the world.
Parents who wish their children were NOT autistic are not necessarily wishing for a different child. There are things in the childs soul that are there under the disability, that would still be there WITHOUT the dissability. What the parents are wishing for is that their child could have a life without so many struggles. There is nothing WRONG with that, in an of itself. The problem only comes when the wish for the child to not have the struggles changes into an obsession to MAKE the child normal.
Whether or not your "dreams" for your child will have to end depends very much on how the Autism manifests itself, how severe it is, and which skills the child struggles with. It is very similar to how parents of down syndrom children must cope, although, austistic parents are luckier in that more of their children show promise, and they rarely have the early death rates associated with downs.
What scares me most of all is when parents on Autism sites start treating Autism like it's a "good" thing. Beautiful, wonderful, talented people can have Austism, but it is STILL a struggle for all of them. One mother on a site I visited when researching things for my son had her signature say "Mercury causes Autism.... Give me some". That type of attitude scares me very much, because it means to me that they're TOO accomodating of their childs situation. You should ALWAYS accept your child for who they are, but to accomodate the dissability (instead of treating it) now will only lead to problems in the future. That parents will not be around to care for the child forever, and it is cruel to the children to not help them reach everything in their true potential.
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quote:Originally posted by Synesthesia: Parents upon finding out that their child is gay will most of the time reject that child and mourn
Not to take away from this discussion, but I'd like to object to this bit. Most of the time? In my experience with friends and relatives who have come out, this is just not true. Maybe it is true some of the time. But I really doubt that it is true most of the time.
I think it happens most of the time, at least with my relatives when I hinted at being a bit... different... Perhaps I should not have done that. That was extremely unpleasent and I couldn't wait to get back to college. I think people should find ways to help autistic people deal with their sensory issuesand with communicating with people who are not autistic, but at the same time, I also think people should be allowed to be themselves. It's hard to find that balance though. The balance between how to deal with other people in the world and how to be yourself. I also think that, in schools especially they should teach kids NOT to pick on a person just because they are different. I know that would be impossible, but this social Darwinist idea just has to die. No one deserves to be picked on for things they cannot control.
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No, I'm cool with the autistic and Asperger's folk. I know some in my own neighborhood, and my kid is very cool with the Asperger's kids at school. I'm not looking to change anyone. I understand how it can be quite a handicap to overcome, but so are a lot of other things. That doesn't make me judgemental, but I do have some empathy for their plight. Like the blind folk I know, or my paralyzed peers, or the developmentally disabled. You can't treat everyone the same because folk aren't all the same. I make accommodations and allowances for lots of things.
But I still think that you are off on the "most" thing.
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Maybe things have changed a bit. I sure hope so. There are things like PFLAG and stuff like that. and it's not like back in say, the 50s or something when most people thought that gayness meant skulking around or something. Then maybe people are making progress!
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DDDaysh, excellent post. I could never have said it better.
Being the parent of a micropreemie has really opened my eyes to the way disabled children and their families are treated. For example, when Aerin was born, hardly any of our (non-Hatrack) friends or family congratulated us. That was just the tip of the iceberg.
Having a child with a visible disfigurement has also changed me a lot. I wrestled with a lot of issues, including whether or not to cover Aerin's hemangioma when we go out. That's no longer an issue since the doctor told us to keep it covered when we go out to prevent infection, but it's something I used to agonize over. On one hand, I never want her to feel ashamed of herself. On the other hand, the hemangioma is really yukky-looking and I wouldn't blame people for being grossed out or upset by it. I usually left it uncovered and let people take their cues from me. I am always happy to answer questions about it and I always make sure to answer them matter-of-factly in an upbeat tone. We've never had any unpleasantness.
BTW, I just want to add that there's no clinical evidence that mercury or gluten causes autism.
Posts: 3037 | Registered: Jan 2002
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Nice post, but you're arguing against a position I never took - and one not taken by the piece I posted, either.
That essay, btw, was not written by me, but be someone else who really did feel the impact of the emotions and attitudes related in the essay. It's popular enough to give evidence that this person's experience wasn't unique - and still isn't.
I'm hard pressed to think of any "autism-friendly" sites that don't openly admit to difficulties and struggles associated with the disability itself. I can't think of anyone (although I'm sure if I looked hard enough I could find some extreme example) who advocates just leaving a kid with autism alone.
The debates revolve around the most effective, humane and respectful ways of increasing a kid's potential. And those debates are needed. As someone who has been on the professional side of things, I've seen some secular/professional approaches to dealing with autism that have a lot in common with the fatal "exorcism" of a child (this made national news a couple years ago).
As for me, the label I would no doubt have if I was a kid growing up in school now is nonverbal learning disabilities. I'm much older than this label, but I have a masters in special ed (and some doctoral studies under my belt) and know my neuropsych test results pretty well. The label is a pretty good fit - not surprising since kids with hydrocephalus were one of the groups that Rourke (see link above) identified as having high incidence of this particular set of assets and difficulties. (Please read any material - including that linked - with a big block of salt, though. I think that some of the explanations for some of the problems we have are stretching - and not really helpful.)
Gotta say that my life would probably be a lot easier if I never had the hydrocephalus that led to the rewiring of my brain as a kid. But if - honestly - someone found some way to "fix" it all right now, I'd turn it down. Fix that wiring and I fear I'd be replaced by a stranger - and I like the life I live now enough to be the one living it. Posts: 4344 | Registered: Mar 2003
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quote:This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
And not get responses like the one DDD offered.
When we thought Litebrite was deaf, we never wished for another child; we just wished she could hear cars coming down the street.
The writer of the article seems to assume that parents/friends/others who want to cure autism cannot simultaneously love those that have it.
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I wonder, too, if the experience of some along the autism spectrum might be like that of those with depression. That is, at least some people with depression who felt it to be a deeply integral part of who they are later, with successful intervention, said they became "more like myself" -- that the treatment for depression brought them back into "who I really am."
It's different, obviously. People with depression usually have had extensive periods of time when they were not depressed. Also, even those with the most successful treatment (whatever that means) may later say that the treatment's side effects hinder them from being fully themselves -- especially for pharmaceutics.
It's just that whatever we experience seems to be readily incorporated into the sense of self, almost as if the brain is frantic to absorb it all into identity. Maybe that's what brains do. Maybe changing to a more neurotypical pattern of interaction with the world will also feel like coming home.
Mind you, I understand that sndrake (I think) is often more concerned about being stark and frank about potnetial problems than potential benefits. This is completely justified and admirable, in my opinion, given the history of how the broader society has 1) viewed, 2) treated, and 3) systematically disenfranchised and even erased those who are different in these ways. Disability has long been, if not a death sentence, at least a hard-to-refund ticket to being treated in pretty vile ways for a long, long time. So I get that sndrake (I think) sees his role as more of a goad and a thorny burr than as someone who smoothes over differences in discussion.
I was just struck by how intense some of the parallels may be with depression, and how plastic the notion of identity seems to be in individual practice.
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Claudia Therese, that reminds me of one of my favorite quotes (which happens to be my sakeriver signature):
quote:-I like plants because they're so mutable. Adaptation means you figure out how to thrive in the world. -But it's easier for plants. I mean they have no memory. With a person though, adapting is almost shameful. It's like running away.
I'd like to focus on the first statement there. I think healthy, resilient individuals put it all into identity, so we do not become strangers to ourselves. "I" being someone else is shaky psychological ground, so healthy brains construct an identity taking into account all experiences.
I'm not saying that the identity isn't real. I'm not sure what bearing this post has on the discussion sndrake is having. But CT's post reminded me of it - when the depression/disability/lot in life is inevitable, to avoid driving ourselves crazy we embrace it. We adapt. That's not a bad thing - it keeps us healthy and keeps us going. To me, that adaptability is a sign of a successful human being. It is our memories and our ability to conceive of other existences that can cause discontent with this solution.
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What a beautiful way of putting it, Katharina.. Mrs. M. What's a hemangioma? I have soem sort of skin graft on my left hand. As a kid folks would ask me about it and other kids would get grossed out by it, but I rather like it and doubt I'd get it removed anytime soon.
What I keep thinking about is ways to take a person's limits into account, while really bringing out their best attributes, not just with Autistic people, but children who have trouble with certain subjects. I toy with the idea of using their interests and obsessions to engage them instead of trying to take them away. Also i tend to feel borderline autistic despite the fact that my eye contact is excellent, maybe a bit too excellet, but I definetly have some...social issues. Now back to work.
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quote:Mind you, I understand that sndrake (I think) is often more concerned about being stark and frank about potnetial problems than potential benefits. This is completely justified and admirable, in my opinion, given the history of how the broader society has 1) viewed, 2) treated, and 3) systematically disenfranchised and even erased those who are different in these ways. Disability has long been, if not a death sentence, at least a hard-to-refund ticket to being treated in pretty vile ways for a long, long time. So I get that sndrake (I think) sees his role as more of a goad and a thorny burr than as someone who smoothes over differences in discussion.
This is partly right - but I'm not just posting this as a goad or to be provocative.
Let's get real any notion of "autism is a disability and/or difference that needs support, not curing" is doomed to near-invisibility in terms of the public.
That message doesn't get you money. That message doesn't get Rick Santorum and a bunch of other legislators hot to pass the "Combating Autism Act." (Lots of autism "advocacy" language is steeped in metaphors of war, violence and plague).
What gets funding is by putting a face on autism - and those who have the label - of a monster.
**** I have realized that I have not had a mid-life crisis and will not have one. Instead, I seem to have been on a ten-year cycle of reinvention and changing course - although I think I have broken that cycle over the last year.
During my previous ten-year cycle, I spent a few years deeply involved in the autism community - especially the self-advocacy part. But I have had little contact with that world for the past ten years.
Until last May.
Last May, on the day before Mother's Day, 3-year-old Katie McCarron was allegedly killed by her mother by means of suffocation.
A few things you should know. Katie had autism and was diagnosed early. For almost 18 months, she had been living with her father (Paul McCarron) in North Carolina so she could attend the Mariposa School. Paul's mother moved from Indiana to stay with him to assist with Katie.
Karen, the mother, stayed in Peoria, IL with the younger daughter.
After 18 months of living apart, Paul and Karen decided to reunite the family in Peoria (Paul works for Caterpillar, which cooperated with his transfers).
Paul was on an overnight trip when Katie was allegedly killed. She had been back with her mother a total of ten days.
Turns out Karen McCarron was very involved with a mother's "support" group in Peoria. Over the next few weeks, it became clear that the group was dominated by what some would call "Mercury Moms." The group was run by some people very active in the movement that is firmly convinced that mercury "caused" autism.
Why do I bring this up? Turns out Karen McCarron was *very* obsessed with the Mercury thing. But let's be clear - mercury obsession doesn't lead to murder, or there would be a lot more murders.
But here's what did happen:
As news of the alleged murder (the mother confessed to several people) spread, so did press coverage. The press coverage coming out of Peoria was saturated with quotes from the support group talking about what a "devoted" mother she was and that it was a wonder that more mothers didn't kill their autistic kids. Easter Seals and the Autism Society of Illinois joined in the chorus.
Reality check: Paul McCarron and his mother were the ones who took care of Katie on a daily basis. They were delighted with her progress - in language, socially, and cognitively.
Apparently Karen McCarron, who hardly saw her, saw nothing but imperfection - and obsessed about mercury and a cure.
According to the Peoria "support" group, the definition of a "good parent" isn't being there to support a child and work for their development - the definition is to be someone who is satisfied with nothing less than a "cure."
Scott et al, if you think that "Don't mourn for us" is harsh, you really wouldn't want a peek at some of my thoughts during some of my darkest days over the past few months.
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After the first flurry of nightmarish press coverage, Mike McCarron, Katie McCarron's paternal grandfather emerged as the grief-stricken and outraged spokesperson for the family (those not accused of killing her).
The battle to stop the "lynching" of Katie McCarron in the press and in "advocacy" groups has brought a lot of people together who were strangers to each other 7 months ago.
For anyone interested, the family decided on a fitting memorial for Katie McCarron.
The quotes at the top are from Mike McCarron, Katie's grandfather. There are other quotes there as well. None from me, due to a browser glitch - and because when all was said and done, I couldn't find any words that worked for me.
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quote:Originally posted by sndrake: Let's get real any notion of "autism is a disability and/or difference that needs support, not curing" is doomed to near-invisibility in terms of the public.
Here, though, you have all the time and attention to discuss it at length, thankfully.
So, do you yourself make this case? Is this where you stand now, Stephen?
(Not a challenge, just trying to understand.)
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quote:Mrs. M. What's a hemangioma? I have soem sort of skin graft on my left hand. As a kid folks would ask me about it and other kids would get grossed out by it, but I rather like it and doubt I'd get it removed anytime soon.
quote:Hemangiomas are a benign tumor of the endothelial cells which normally line the blood vessels. In hemangiomas, these cells multiply at an abnormally rapid rate and form extra blood vessels.
You can see a picture of Aerin's hemangioma here. It's not for the squeamish.
Any child's death is devastating, but Katie McCarron's murder especially breaks my heart. It sickens me that any so-called advocacy group would support her mother. The attitude that children with disabilities are an overwhelming burden to their parents is just so sad and untrue. I have never once thought of Aerin as a burden, not on my darkest day. When you love a child unconditionally, you love every part of them.
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I never even heard a hemangioma before. Does it hurt? I had a fibrosarcoma on my left hand, but it wasn't benign. They had to do surgery on it and they put a skin graft and took out a lot of muscles so my left hand is a lot smaller than my right hand. So I play left handed guitar.
I will not be supporting the Easter Seals. I doubt it is easy to have a child with a handicap, but wwanting to kill them? How is that right? Why can't they try to understand what things are like for them in terms of sensory problems? I just don't understand. It makes me too sad. Posts: 9942 | Registered: Mar 2003
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The hemangioma itself doesn't hurt, but the scabs sometimes do. I'm pretty adept at dressing her without touching her bump, as we call it, and we're very careful of it, so she rarely has any pain. She's developed a very disturbing habit of touching it and picking at the scabs, which really upsets me.
Right now, it's in an involution phase, which means that it's dying. This is good because it won't get any bigger. However, the dying will take years and it won't disappear, but change into fibro-fatty tissue. She's having it removed in the spring and will have a skin graft. They won't be removing any muscles, but there is a risk that she will lose arm function because the vessels that need to be tied off are wrapped around nerves..
Posts: 3037 | Registered: Jan 2002
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I think it's a mistake to mourn a disability for very long. So-- I don't have a problem with the 'don't mourn for us' movement.
I do have a problem with people who claim that there is only one way to love someone else.
It's entirely possible to love and support a person with autism and still seek a cure. These things are not mutually exclusive.
Posts: 14554 | Registered: Dec 1999
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