Page 1 of 1 [ 7 posts ] 

eikonabridge
Veteran
Veteran

User avatar

Joined: 25 Sep 2014
Age: 61
Gender: Male
Posts: 929

22 Aug 2018, 8:30 am

Escape from the Mayo Clinic: Parents break teen out of world-famous hospital

https://www.cnn.com/2018/08/13/health/mayo-clinic-escape-1-eprise/index.html
https://www.cnn.com/2018/08/13/health/mayo-clinic-escape-2-eprise/index.html

To make a long story short: parents wanted hospital's rehab unit to attend their daughter a certain way, asked to change staff a few times too many. Hospital staffers and doctors got mad, thought the parents were out of control and a danger to the welfare of their daughter. Things snowballed. A staffer described the mom as having "mental health issues." Mayo then barred the mom from hospital grounds, and even sought legal guardianship of the 22-year-old adult daughter. Parents schemed an escape plan, fooled the hospital staff, and successfully retrieved the daughter from hospital. Mayo called police, accusing parents of patient abduction. Mayo said the daughter was in health danger. An evaluation by a different doctor at a different hospital disagreed: patient should be free to go home. Police said: "We didn't have any reason for the police to intervene."

My guess is Mayo will shut up their mouth and settle off the record. Though parents are clearly no saints, either.

- - -

I am currently reading Carly's Voice, the book. There was this paragraph of the mother talking to the superintendent of the school.

... He (the superintendent) resisted, claiming that ABA was the "flavor of the month" in treatment of autism and that Tammy (the mother) had no right to interfere with the implementation of special education in the Toronto District School Board. "You do not get to determine how we teach children," he said, and hung up. ...

- - -

The thing is, neurotypicals always stress on the importance of empathy to other people. They always try to teach autistic people certain values: learn to respect, be polite, apologize, things like that. But, the truth is, neurotypicals preach for one thing, and do something entirely different. It's always like: do what I say, not what I do.

Frankly, I see all too many times misunderstanding and unnecessary escalation on the side of neurotypicals. It's more a rule than exception. I don't see them as less prone to conflicts or any better at conflict resolution. At the heart of the issues is always "Me, me, me, it's all about me." And when something doesn't go their way, the first thing that surfaces in their mind is: "I'll teach you a lesson ..."

So, what's so great about being neurotypical? What's there to follow? Isn't it better to get rid of all those fake facades, and simply face the facts?

It's just amazing that once people acquire biases, how far they can stretch the facts. For instance, the Mayo doctor would say:

... The doctor warned that Alyssa was in grave danger.
"The longer she's away, the higher likelihood that she's gonna get very, very sick," the physician said, according to a transcript of the conversation that police provided to CNN. ...


Really? Then how come a doctor from a second hospital said the patient was totally fine to go home?

Or, in the case of schools, all teachers/psychologists/superintendents will ALWAYS claim that they are doing the best for the student. Seriously?

I mean, these are the values that neurotypicals are imparting, through their actions:

(1) "Me, me, me, it's always about me."
(2) "I'll teach you a lesson ..."


No wonder they are always stuck in conflicts.

- - -

All this, should be compared to Grigori Perelman, who solved the Poincaré conjecture. He was offered the one-million dollar Millenium prize, has was also offered the Fields Medal (equivalent to Nobel Prize in mathematics). He declined them both.

Which are the values you want to impart to your children?


_________________
Jason Lu
http://www.eikonabridge.com/


DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 13,683
Location: Northern California

22 Aug 2018, 5:52 pm

The problem with the term "neurotypical" is that no one with any neurology is actually "typical." There is a whole spectrum of wants/needs, strengths/weaknesses, skills/talents, controlling/compassion, selfishness/selflessness and personality/negativity(etc) among the NT population, too.

My preference is to deal with "good" people, no matter what their neurology is. By "good" I mean people willing to care about someone else's needs and ideas, willing to try to communicate in a calm manner, willing to take responsibility for their own part in misunderstandings, and willing to follow the key rules that allow people to live peacefully together. When people are willing, I believe that most differences can eventually be overcome. None of us are perfect. Effort counts, IMHO.

I don't agree with your conclusions. They apply to some people in the NT world, but NOT most. And I don't think you solicit the "willing" side of people when you jump to conclusions or act judgemental. People tend to respond in kind. Be judgemental, you will get judgemental back. And so on.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


eikonabridge
Veteran
Veteran

User avatar

Joined: 25 Sep 2014
Age: 61
Gender: Male
Posts: 929

23 Aug 2018, 6:04 am

DW_a_mom wrote:
... And I don't think you solicit the "willing" side of people when you jump to conclusions or act judgemental. People tend to respond in kind. Be judgemental, you will get judgemental back. And so on.

Have you ever considered that you may be at the beginning of a learning curve?

As I have always said, controversy is daily bread and butter in science. Tell me a major theory in science that has not been controversial. Galileo was sent to inquisition for suggesting the earth moved around the sun. Einstein never received a Nobel Prize for General Relativity. Gell-Mann never received a Nobel Prize for quarks, and matter of fact, his original paper was rejected. With worse fate than Gell-Mann, George Zweig was not even allowed to give a talk on quark (which he called "aces") in CERN (the European accelerator physics lab), and the director of CERN further instructed the secretary there not to type up George Zweig's paper. Poor Zweig did not have typing skills, so his paper never even got anywhere, and stayed only as a pre-print. Ha! What you think is awful: controversy, is a given in science. As they say: get used to it.

The USA is a free country today, and has triggered waves of revolution/independence movements throughout the world. People tend to forget that the freedom they enjoy today, comes not through talking politely. You think the British Crown responded with their "willing" side when asked? Changes often happen, only when the existing system is jolted out of its comfort zone.

My best friends tend to be neurotypical. My wife is neurotypical, for that matter. Mind you, what you are saying is nothing new to my ears. For the first 10 years of our marriage she was the one lecturing me on all the "solicit the willing side" of people. Even after we've successfully started to raise our autistic children, she was still on the "solicit the willing side" of people. Do you want to know how she is approaching the parents asking questions about autism today? She has become blunt and direct, and let the parents know that they are at fault. Today, she is the one that tells me about the analogy to the American revolution. The only way to help parents to save their children's lives, is to make them realize that THEY are the causes of their children's underdevelopment. You can be polite to the parents for years after years, but guess what? You see how one family after another becomes divorced. You see with your own eyes how their children become more and more violent. In her last exchange with an acquaintance that has a violent autistic child, my wife basically told the person that "you asked for it." Now, my wife is probably the nicest person anyone could find in the world. How did she turn from a person that was just like you, into a person that is blunt and direct? Because, like myself, she has found out that, being blunt and direct is the only way that works. Everything else is an illusion. You know how long it takes to get a typical parent to start to move their hands and draw pictures and write down words for their children? For the really nice and willing ones, at least 2 years. For most, it just never happens. And we are not even talking about making animation video clips (which by the way are skills that little children are acquiring today. Everyone in my daughter's class learned to make and edit their first video clip in first grade. So don't tell me that video making requires advanced skills). You see people trying out all kinds of drugs on their children, going to fringe therapies, spending years if not decades trying to find answers out there, BUT, you don't see them looking at themselves as the source of the problems. You don't see the parents willing to acquire skills. I mean, making an animation video clip nowadays is a piece of cake, with modern devices and an app like "Explain Everything" you can even do it on a phone and display it on a big screen TV. I've even given free lessons. But guess what? Parents can't pick up skills. And they nod their heads at you, and one second later go out to chase for transcranial magnetic stimulation, and you are left with this "huh?" feeling. Even after our pediatrician has seen with his own eyes that my son was making progress, he still offered ADHD drug. My son used to have an attention span of less than 3 seconds, totally unable to focus on static images, let alone read any letter or word. Guess what? I was able to use those precious 2 or 3 seconds to develop him, taught him read books, before he was 3 years old. What do other parents do? They blame the underdevelopment of their children on ADHD. The parents don't do a damn thing with their hands. They don't learn skills themselves. Without visual-manual communication, how are you ever going to remove the resentments from these non-verbal children? So, you can only watch your own eyes how the children become more and more violent, and more and more drugs pumped into their bodies. Until everything falls apart. All this, despite you have told them years ago that the parents they were on the wrong path.

So, after you have seen all these cases up close and personal, you learn that "soliciting the willing side" of parents is BS. All on the contrary, the earlier you are blunt and direct with them, the better. Do you know how many parents fall into the trap of ableism? Do you know how many of them just use the "low functioning" excuse and stop doing anything for their children?

Nahh ... I've consistently said it throughout all these years: the children are perfectly fine. We've been treating the wrong patients. Parents are the ones that need treatment. Until the day parents wake up and realize that THEY are the problem, there is very little hope that autistic children can be developed properly.

I do hang around with a whole bunch of families with children on the spectrum. There are surely happy families. With the most successful family, we often exchange images of our children's creativity. Those parents listen and work with their hands. However, the majority of parents out there still spend most of their time chasing after therapies, doctors, blood tests, diets, supplements, attending conferences, taking children to all sorts of events (sports, zoo, horses, you name it), running around like crazy, spending a fortune. I mean, when you are so busy doing all those things, when will you have time to really sit down and communicate with your children and develop them, visual-manually?

- - -

Here are the videos of Carly Fleischmann's first (failed) interview to Stephen Colbert, and Stephen Colbert's explanation after the failed attempt.




Sure, a bright mind ruined by our society. I am going through the book and so many passages make me cringe. It's just sad how much drug has been pumped into her body, and how wrong the early approaches have been.


_________________
Jason Lu
http://www.eikonabridge.com/


DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 13,683
Location: Northern California

24 Aug 2018, 5:16 pm

^^^^ Have you considered that you might not have all the answers you think you have, and that you are the one at the start of a learning curve?

I, too, can point to an extremely happy, successful and well adjusted fully grown ASD child that THRIVED under my choices. I, too, have dissuaded families from wasted therapies and dangerous treatments, reminding them that what their child needs most is THEM. I could spend days writing about it the same way you do, but I don't have time to. What I am is confident in my knowledge because I traveled the path and I know from my son's own adult voice how he feels about it. And, yet, you and I are not always on exactly the same page.

There are two problems I see in your egotistical approach:

1. You discount the possibility that ANYTHING else can EVER work, if it wasn't in your bag of tricks. My family is PROOF that you are wrong. As are many other families I know. You are NOT the only one getting accolades for making the right choices with your children and raising them to HAPPY adults. I, too, over the years converted a LOT of people to my viewpoint because of the simple fact that my approach WORKS. However, ALL CHILDREN, including ASD children, are UNIQUE, so what works for one person, may not work for someone else. You and I can only say with certainty that we figured out what worked for OUR kids, and maybe a few people we're in contact with enough to know we've successfully advised. Every other family? Just a hope that it SHOULD work. No guarantees.

2. While there are parents that desperately do need a different parenting style, and do need to hear from you and me on how to find that different style, we can lose both the battle and the war if we approach them wrong. I have watched so many parents come on this board and FLEE because of what they hear. So what has been accomplished? They've now run from their best opportunity to hear directly from people on the spectrum, and are getting all their information from Autism Speaks and the like. Granted, mainstream advice is MUCH improved since my child was young, but I still believe there is so much value in a place like this that it breaks my heart for the kids every time someone here chases someone away. Being blunt face to face with someone who trusts you is VERY different from being blunt with someone who already feels uncertain about the unknown place they just wandered into.

Parents NEED to hear from a VARIETY of voices, and they NEED to hear those voices in a way that successfully leads them to make the best choices from their children. It is how most parents process information regarding family choices, and how they reach conclusions they will eventually "own." Definitely there are voices I don't want them to hear at all, but those voices aren't usually on THIS board, so keeping them HERE reduces the odds they will chose the more questionable routes. You usually have solid advice, I have never disputed that. But you are really frustrating to work with. That limits your ability to create positive change for people through the board. Your voice could be more effective if you tried to understand my points to you.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 13,683
Location: Northern California

25 Aug 2018, 5:27 pm

Jason, I wanted to come back and apologize for my approach in some of these posts. But here is what you need to understand and, yes, adapt to: when you make negative assumptions and conclusions about whole groups of people, you aren’t being fair to them and you turn them away. As someone who probably straddles the NT and ASD worlds in my own neurology (not really being a part of either), I really do feel your conclusions are wrong, and it takes a lot of hubris to speak with so much certainty about people whose lives you have not and never will live. When you do that, you being every bit as wrongheaded and stubborn as parents who demand their ASD children act NT, and assume the worst of them when they can’t.

What you more accurately can say, and it might be useful to, is say “to an ASD mind like mine, when NTs do or say A, B and C, it leads me to conclude that NTs are X. I am aware that my conclusion might not be accurate, but as a parent you need to understand that this is the lesson you might be inadvertently teaching your ASD child.”

A few extra words and you go from essentially saying “I think you are scum if you are NT” (what we hear) to “be careful using certain common NT tools and phrases because your ASD child may be learning something you do not intend.”

The later, I realize, is what you really meant with this thread. And in that the message could be very valuable. But it most definitely is not what most people are going to hear when they read your initial post.

A classic example of where NT rules and intentions cannot successfully cross into the mind of an ASD child is lying. The world of NT politeness has ended up inadvertently teaching many members here that people have to lie to get by in this world; that the NT world is all based on lies. To try to fit in, the child takes up lying and then can’t understand why he gets punished for it. We’ve seen it happen on these boards. The neurological difference takes good intentions and imparts the completely wrong lesson. That is something parents need to understand, but they aren’t going to get there by people saying to them, “you’re a liar and that is why you ASD child is lying.”

Does this make sense?

Hope you’ve been having a glorious weekend with your family. Hopefully we can understand each other a little better. We have the same goal when we come here, I truly believe that.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


eikonabridge
Veteran
Veteran

User avatar

Joined: 25 Sep 2014
Age: 61
Gender: Male
Posts: 929

23 Sep 2018, 9:39 am

This is how the world is actually run, out there:

https://www.cnn.com/2018/09/04/politics/bob-woodward-book-donald-trump-fear/index.html

Read and follow all the "polite" terms used there.

- - -

And this is what happens when neurotypical people demand apology from each other:

https://twitter.com/twitter/statuses/1038550886346317829

Yeap, these two points summarize neurotypical people perfectly:

(1) Me, me, me. It's always about me.
(2) I'll teach you a lesson ...

- - -

Frankly, I don't recall I've ever asked for other people's apology. It's just not natural for autistic people to ask for apologies. That's a neurotypical thingy. So, to me, neurotypical people can continue to keep their social "etiquettes" and continue to enjoy their endless conflicts. Thanks, but no thanks. Keep all that great empathy stuff to yourselves. Don't lecture others when you yourselves are such disasters. Meanwhile, I'll continue to enjoy my two children. I allow them to throw tantrums anytime they want to. Strangely, they are among the nicest kids in the world, always happy, always smiling, darlings to everyone around them. Isn't that most curious? In a recent e-mail communication to three of my son's teachers (two previous), this is what they wrote back: "So cute!!", "I miss that smile so much!!", and "What a sweetie!!" Notice the double exclamation marks, from all three of them. Strange, isn't it? I mean, after all, I am the one that allows my son to throw tantrums at anytime. Ha ha. It's reciprocal. My children also understand that it's within my right to get upset at anytime. But guess what? The one thing we tell each other is: sometimes life is tough, sometimes life is fun. And magically, all bad feelings go away instantly ...

Naahhh ... neurotypical people have nothing to teach us. They are the ones that ought to be learning, not lecturing.


_________________
Jason Lu
http://www.eikonabridge.com/


DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 13,683
Location: Northern California

23 Sep 2018, 2:35 pm

^^^ I don't think you serve the interests of the ASD community when you confirm their worst (and often inaccurate) impressions of the NT world. Modify with the word "some" and you can be on target. But you insist on "all." In my experience, that just is NOT true, and it increases the separation when people assume it is.


I have a delightful and HAPPY grown ASD child, too, you know, who adults always adored. Lots of double and triple exclamation points in his past. None of that helped him avoid irreparably hurting (and losing) his first love with his inaccurate assumptions, however, and that has been his one big regret in life to date.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).