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View Diary: Living With Autism/Aspergers w/FAQ (174 comments)

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  •  Well done! (2+ / 0-)
    Recommended by:
    miss SPED, FarWestGirl

    Wonderful and thorough diary.

    As a teacher, (librarian) do you have any tips for dealing with HFA or Aspy kids when meltdowns occur. Teachers I see just seem to freak-out when this happens. I always just try and give the kids some space to try and calm down and get it together.  

    Thanks again, for this most thoughtful diary.

    •  Giving them space (4+ / 0-)

      may well be the best strategy. When an autie melts down, they don't usually want interaction. They need to be given a few minutes to calm down (or a few hours). It's not the time to reason with them.

      "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

      by Phil In Denver on Tue Jul 28, 2009 at 07:11:51 AM PDT

      [ Parent ]

    •  OK, this is my advice (6+ / 0-)

      Well, you're doing the right thing to start with, giving some space to calm down.

      Only thing which might help: they are almost certainly melting down about something.  If they've already said what it is, tell them that they are right to be angry/frustrated/whatever about it and you will do something about it, before making efforts to get them to calm down.   If you can't figure out what they're melting down about, tell them that you will listen to their complaint once you can figure it out.

      Not validating their emotions is a recipe for alienation and hostility.

      Once you've found out what's actually wrong it makes it a lot easier to deal with it (facilitated discussions between kids, etc.)

      -5.63, -8.10. Learn about Duverger's Law.

      by neroden on Tue Jul 28, 2009 at 07:18:16 AM PDT

      [ Parent ]

      •  As long as you wait (6+ / 0-)

        until they calm down I agree. During a meltdown is not the time to address anything. We temporarily lose about 30 IQ points during meltdowns. Not the best time to discuss, validate, or anything else.

        "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

        by Phil In Denver on Tue Jul 28, 2009 at 07:22:37 AM PDT

        [ Parent ]

        •  Well, much of the time when I melted down (4+ / 0-)

          I was furious because I had a complaint which was not being dealt with.  Giving me "space" was just a way of avoiding dealing with my problem, as far as I was concerned.

          "I will deal with your complaint later, I promise" was absolutely necessary to prevent things from getting worse.  I wouldn't do that to a kid who was obviously melting down in a completely solitary fashion, who should just be left alone for a while, but a kid who was acting out at others or demanding help -- that's another matter.  I guess there are meltdowns and then there are meltdowns.

          -5.63, -8.10. Learn about Duverger's Law.

          by neroden on Tue Jul 28, 2009 at 07:28:45 AM PDT

          [ Parent ]

          •  Yeah, I think you are talking about (5+ / 0-)

            being perseverative more than melting down. As I'm sure you know, these kids can be very persistent and insistent. They can go off the deep end if their concerns are not addressed.

            "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

            by Phil In Denver on Tue Jul 28, 2009 at 07:35:08 AM PDT

            [ Parent ]

            •  Huh, I suppose I've had straight (2+ / 0-)
              Recommended by:
              Exurban Mom, Cassandra Waites

              sensory-overload meltdowns too.  But those are so obvious (hands over ears and eyes) and the correct response is so obvious (remove sources of sensory overload) that I didn't even think about them!

              -5.63, -8.10. Learn about Duverger's Law.

              by neroden on Tue Jul 28, 2009 at 07:53:18 AM PDT

              [ Parent ]

              •  Well my daughter never has those nor do I (1+ / 0-)
                Recommended by:
                Cassandra Waites

                but she's had plenty of meltdowns over frustration. In such cases, there seems to be no reasoning with her or with me. But we find that with time, usually a matter of 20 minutes or so, she's back to normal. I take a good deal longer.

                "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

                by Phil In Denver on Tue Jul 28, 2009 at 08:07:24 AM PDT

                [ Parent ]

                •  For me it also takes time (3+ / 0-)

                  But if my frustration was with other people (as opposed to a project or something), I had to first be promised that my frustration will be dealt with "later", or my frustration would peserverate and spiral up, and up, and up, and up, and go on for effectively forever.  If I had a promise of help later, I could calm down within a finite amount of time.

                  (Perhaps I had too many very young experiences of never having the problems dealt with; people just isolated me because I'd melted down and when I'd calmed down they acted like things were better, which they WEREN'T, the DAMNED IDIOTS, I'm getting angry even thinking about it.)

                  -5.63, -8.10. Learn about Duverger's Law.

                  by neroden on Tue Jul 28, 2009 at 08:13:28 AM PDT

                  [ Parent ]

                  •  My daughter does exactly the same thing (1+ / 0-)
                    Recommended by:
                    codeman38

                    and I guess I do too, to a lesser degree. We have to tell her something to placate her, but she may be worse than you on that. Simply telling her that her concern will be addressed often isn't enough. I'm hoping that improves with age.

                    "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

                    by Phil In Denver on Tue Jul 28, 2009 at 08:19:13 AM PDT

                    [ Parent ]

                  •  So here is a question (5+ / 0-)

                    I've got this project manager see, and the guy is always trying to get us all to have social gatherings and have lunch together. God I really hate it. I just want to do my work and go home, I'm not here to socialize.

                    I know he probably doesn't think I'm a "team player" if you know what I mean. But when I go to those damn things I just sit there and eat my lunch and don't really have anything to converse about. It's agony for me.

                    How do I get out of this without pissing off this overly NT manager?

                    "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

                    by Phil In Denver on Tue Jul 28, 2009 at 08:23:25 AM PDT

                    [ Parent ]

                    •  You may not be able to get out of it... (2+ / 0-)
                      Recommended by:
                      codeman38, Cassandra Waites

                      ...your manager may have included "hold regular lunch meetings to foster a sense of teamwork" on his list of performance review goals, for all we know, so he may see deviation from this goal or plan as counter to his own best interests, as well as the team's. If you cannot beg off attending them (perhaps try to win his sympathy by confessing to having a "mild social phobia" that makes eating with others a very anxious experience for you, and suggest that you be allowed to work through the occasional team lunch instead?), then your best bet is to develop a few coping skills.

                      I feel your pain - I despised "social" or "team-building" lunches at a few of my former workplaces, mostly because my colleagues had very different interests than I did (and also, like you, I just wanted to do my work and go home). It was especially painful and stilted when the team I was working on included a bunch of Actuaries, who (sorry, Actuaries!) tend to be extreme introverts with interests that run to things like baseball statistics. For me, this was torture.

                      I don't have much trouble with social interaction on a normal basis, but for some reason these lunch meetings were hellish. In self-defense, I started preparing a list of topics I could bring up that I either knew a fair amount about, or had a lot of trivial knowledge pertaining to the subject. I would also check YouTube and find out what the most popular viral videos were at the moment.

                      Then, at these lunches, if the conversation ground to a halt (and it always did), I would bring up one of these topics - usually framed as "my brother-in-law [or sister, or an old colleague] sent me an interesting web link the other day, has anyone seen [fill in the blank]?" Then I would introduce the topic, and usually at least a couple of people would have some interest or an anecdote about it. You look like you're making an effort, the manager notices this, and you're off the hook if the conversation dies afterwards - at least you tried, right?

                      It seems like a clinical approach to forced social interaction, but it worked for me.  Good luck!

                    •  Well, you do have (0+ / 0-)

                      a diagnosed disability, and there is the Americans with Disabilities Act, right?

                      Perhaps you could approach the project manager at a time far, far away from one of these forced social events, and explain that you have a "social anxiety disorder" (which is true) and that, while you are would be comfortable at working/collaborative lunches or get-together which have a specific, work-related goal in mind, that required attendance/participation in these social-only events have a medically negative impact on you.

                      Evil is making the premedicated choice to be a dick -- Jason Stackhouse

                      by Frankenoid on Tue Jul 28, 2009 at 06:54:39 PM PDT

                      [ Parent ]

              •  Incidentally, the sensory thing (3+ / 0-)
                Recommended by:
                mbzoltan, codeman38, Cassandra Waites

                was 'eye-opening' (if you'll forgive the wordplay) for me.  I'd suspected Asperger's based on the deficits related to social cues and so forth.

                However, I've also been described by my friends and family as having superhuman hearing and sight.  (Tested at significantly better than 20/20 and can hear the quietest sound they use on hearing tests with no problem.)  And 'bland' foods like rice and bread tastes like it has a strong flavor to me, so .  And perfumes generally make me ill because they're so strong.

                So discovering that heightened sense perceptions are also associated with autism-spectrum disorders was startling and, well, diagnosis-confirming.

                -5.63, -8.10. Learn about Duverger's Law.

                by neroden on Tue Jul 28, 2009 at 08:23:05 AM PDT

                [ Parent ]

            •  And that's what really scares me about ASD. (1+ / 0-)
              Recommended by:
              neroden

              I was socially awkward for a good deal of my life. In a workplace setting, still so; because I haven't yet been very successful. Less so in my social life, and especially in politics.

              I was never diagnosed with autism or AS, though I have worried if I had it. After much deliberation, I came to the conclusion that I don't, because my problem was not in picking up on social cues but how to honor them, and meet my needs too, if they were rejecting ones-- though I still have enough pieces of it to empathize with those who've got the whole enchilada.

              What worries me is how virtues become vices. How strengths become evidence you have a neurological dysfunction. Determination and persistence becomes "perseveration". I can picture whistleblowers and activists being tagged with this label, in an attempt to remove their credibility.

              I've been afraid to be too persistent, too enthusiastic, too passionate about my work, lest I "look like an AS".

              I differ from people here, because I see nothing liberating about a diagnosis of ASD. I fear that if I got one, I would be putting the final nail in the coffin of my employability.

              The fact is that most employers don't want to hire people who don't "fit in". And that's why, in large part, I think the ASD craze is a racket: it's a way to marginalize people who think and feel for themselves, and a way to create an educated socioeconomic underclass. Because employers routinely overlook education, and even hard work itself, in search of the good social fit.

              ASD diagnoses and programs in our schools simply mirror our workplaces' values. Which have been proven to be toxic, and damaging to our economy. The solution to me is making workplace cultures that value skill and education again, and have room for the offbeat.

              Real Democrats don't abandon the middle class. --John Kerry

              by Lucy Montrose on Tue Jul 28, 2009 at 08:06:22 AM PDT

              [ Parent ]

              •  What th? (4+ / 0-)

                Look, I have a little news for you. Aspies and Auties are often VERY successful in their careers. It's just a matter of selecting the right one. It's of no valueto anyone to put a person who can't communicate face to face in a job where they have to make sales pitches and cooperatively work on business deals.

                But give that person a computer and a desk and tell them to work on code and they might save a company from complete destruction.

                I don't do well at all in managerial type roles where I have a lot of human interaction, but I still manage to earn at lest double the national average as a software engineer.

                Here is a hint, you don't wear your diagnosis on your shoulder, just don't be stupid about what career choices you make.

                "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

                by Phil In Denver on Tue Jul 28, 2009 at 08:13:32 AM PDT

                [ Parent ]

                •  I think the number of actual ASD cases is much... (1+ / 0-)
                  Recommended by:
                  mbzoltan

                  ... lower than we think. In many cases, it's simply "Toxic and Coercive Culture Disorder".

                  I think a lot of ASD cases would simply vanish if we returned our social world to human scale. And we did a better job of making kids feel not only safe and emotionally supported, but like they had a sense of control in their own lives.

                  I fear that a lot of these childhood behavioral programs do a terrible job of that. With their single-minded focus on making the child "appropriate", they remove the child's voice, their sense of agency and personal power. And that can create emotional problems where they didn't exist before.

                  Real Democrats don't abandon the middle class. --John Kerry

                  by Lucy Montrose on Tue Jul 28, 2009 at 08:24:22 AM PDT

                  [ Parent ]

                  •  I have to ask... (6+ / 0-)

                    do you know anyone well who has been diagnosed on the autism spectrum?  I mean really diagnosed -- gone through the dozens and dozens of pages of questionnaires, and hours of testing, which constitute a thorough evaluation.

                    Having autism doesn't mean you're a little bit "quirky".  Diagnostically it means that your collections of quirks significantly -- "qualitatively" -- interfere with your ability to communicate and interact socially, and which restricts your attention or behavior.

                    Here's an example.  Most kids, beginning quite early in toddlerhood, strain at the restraint and interference of parents.  The mantra is "I can do it myself".  They crave independence; they want to dress themselves, feed themselves, try new things.

                    My son had to be pushed, shoved and coerced into doing everything.  As a baby, he didn't try to feed himself.  He'd eat a cracker -- if I put it in his mouth.  But he would not pick up the cracker and put it in his own mouth (it's a family legend now that the first time he fed himself was when he got barbecue sauce on his fingers at @ age 1; he hated having dirty hands so stuck his fingers in his mouth to get that stuff off... and finally made the connection that he could put good tasting things in his own mouth and so grabbed a barbecued rib off my plate to gnaw on).  He wouldn't hold his own cup or bottle.

                    Getting him to undress/dress himself was a year long process.  First we got him to take off a sock.  Then his underwear.  Week by week, one article of clothing at a time until he was finally disrobing on his own.  Then reversed the process on getting the clothes back on.

                    His need for routine, for "mom and dad have always done this so that's how it always would be" outweighed the normal developmental desire for independence.

                    Now, if you saw my kid in a classroom (he is mainstreamed), or playing with other kids (and he greatly craves friendship and social connection), you wouldn't necessarily guess he was on the autism spectrum.  He's just a kid.  But he's not like other kids and that he can be "just a kid" has taken a lot of hard work and understanding.

                    Evil is making the premedicated choice to be a dick -- Jason Stackhouse

                    by Frankenoid on Tue Jul 28, 2009 at 10:51:59 AM PDT

                    [ Parent ]

                    •  No, I'm afraid not. (long, sorry) (0+ / 0-)

                      I've read about many people's experiences with themselves or their kids on the web, but I've met very few face to face. Big problem.

                      I'm glad that the qualified authorities take the diagnosis of ASD a lot less lightly than society at large does-- though in our elementary schools, I fear that breaking down.

                      When I was 5 years old, I moved to another state away from my two best friends. My mother said she had never seen so many tears. In my new home, I'm tested by a child psychology center that's now defunct, which tells my parents I'm "emotionally and behaviorally impaired", and Mom said they tried to give me meds. She refused.
                      I was never diagnosed with autism, ADD, or even Asperger's; but I worry I might today if I went in. The fact of the matter is, the mechanism of proving your social adeptness is largely out of your control-- you can't control whether others are going to favor you, no matter how good your behavior is; but them favoring you is, unfortunately, your "proof". Essentially, your personality or neurology is held responsible for other people's decisions, just like The Secret saying you attract bad experiences to yourself; and that is just wrong.

                      It was also right about this time I heard my voice on a tape recorder for the first time, and I loathed it. I also saw myself on video, and I didn't like how it differed from how I'd felt to be carrying myself. It hit me for the first time that how I presented myself might not be as good as how I saw myself. So I decided I would avoid anything that required I have a good image. Because even then, I wanted my self-image to match how I came off to the world.

                      I also remember so many of the behavioral class teachers-- which my mother kept insisting were my friends-- act in ways to me I saw as condescending, and not respectful of my "voice". I wasn't convinced at all.
                      I think this environment, and the drastic change it posed from the joyful, supportive social environment I'd moved away from, was the real culprit behind my "emotional problems". Because I definitely was not like your son. I'd had never had a developmental issue before, just a tendency to wander off on my own, touch things in stores, and get mouthy.

                      I came to the conclusion that if I were stuck at any phase, it would be the "romantic phase". Approximately at age 4 to 7, this is where kids really start to get conscious of their social world, and to want to be a part of it. This often manifests itself in wanting to spend more time with the opposite-sex parent than with the same-sex parent, but not always. It is almost universally characterized by competitiveness, sensitivity to slights, and assertion of superhuman powers. Children who as criticized or shamed for this often react by being inhibited and ashamed. They may stop trying to get positive attention from the opposite sex, or even any relationship satisfaction at all.

                      I remember getting criticism at that age for being too emotional, as well as what I saw as condescension. I remember wanting intensely to be a part of everything, and breaking more than a few social rules to get a piece of it. Because I thought that sitting around waiting for others to favor me, or extend me an invitation, was BS: but unfortunately, it seemed to be the only socially correct option. So even back then, I saw the double bind and I wanted no part of it.

                      I don't remember too much more, but I do know that I never quite was "all right" with letting go and being realistic about my own powers in relationships. I never did think I would be good enough if I didn't stand out in some way, or be the very best of the bunch-- and I'm afraid the job market is fomenting that even today, because the pressure to be the very best applicant out of 500 or a 1000 is driving me crazy. It makes me feel like I need a whole new life. Get me that time machine; I want to redo the last 10 years.

                      The romantic phase comes a lot closer to the mark IMO in understanding how we learn to relate to each other. It has nothing to do with ASD. And we ignore it at our peril.

                      Real Democrats don't abandon the middle class. --John Kerry

                      by Lucy Montrose on Tue Jul 28, 2009 at 12:19:28 PM PDT

                      [ Parent ]

                      •  Your issues on their surface (3+ / 0-)

                        as described here don't even sound like ASD. But that does not mean that the people who may share some commonality of symptoms with you have been misdiagnosed. There is a great deal more in the Autism DSM IV than the handful of things you describe or apparently cause you to believe define those of us who have been diagnosed.

                        Your previous comments sound almost like the ignorant ravings that Dennis Leary was recently criticized for (though not quite that bad).

                        There is a LOT that goes into an autism diagnosis and really having been involved with it for a number of years now, I have to say that Childfind does a damn good job, far better than ANY independent psychologist I have ever seen, and believe me I've been to plenty of them.

                        Please don't do us the disservice of trivializing the disabilities with which we have been saddled. None of us on the spectrum has asked for this, it is the hand we were dealt.

                        "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

                        by Phil In Denver on Tue Jul 28, 2009 at 12:31:34 PM PDT

                        [ Parent ]

                        •  It is rather difficult for me to phrase it... (0+ / 0-)

                          ... that doesn't sound like trivialization. I don't think I will ever see eye to eye on diagnosis with you. It's based on my own life experiences and I agree to disagree.
                          I do have a tendency to use loaded words, probably out of a misguided quest for efficiency and punch.

                          I guess the best way I can put it is: everybody, no matter their disability, should be treated as competent and as equals.

                          ASD looks, first of all, to me like a pernicious excuse for people in power not to do that. Was it codeman who posted the link to "Neurotypical Privilege"? It's on this thread, under the heading "speaking of power imbalances". It absolutely broke my heart. Especially the way the non-NT's entire emotional experience and judgment are often invalidated.
                          Especially since the line between ASD and the quirky side of normal human behavior is so blurry, this invalidation, to me, is criminal. And no, I wouldn't put it past corporations and their enablers to do anything to keep in place a certain power structure they like.

                          I would be a LOT more worried about potential sociopaths. ASD'ers, by and large, are ethical and empathetic. Sociopaths are not, are truly dangerous to others... and by the way, often have good social skills.

                          I am, for the record, most likely what Vacationland described-- on the outer edges of ASD, pressing my nose against the glass.

                          Real Democrats don't abandon the middle class. --John Kerry

                          by Lucy Montrose on Tue Jul 28, 2009 at 01:09:43 PM PDT

                          [ Parent ]

                          •  That line may be blurry to you (3+ / 0-)
                            Recommended by:
                            Frankenoid, neroden, Cassandra Waites

                            but it's crystal clear to anyone who bothers to actually look through the DSM IV. Autism in all it's forms is a neruological disorder that makes it impossible or difficult to communicate because of a lack of comprehension of some elements of human communication. It is at it's minimum, an inability to see that which the NT is capable of seeing (social cues, eye reading, knowing how to small talk, etc).

                            You are seeing it as a behavioral condition, it is not, behavior is a manifestation, it is not inherent in root of the condition. How we behave is a reflection of how we comprehend the world around us.

                            To the extent that ASD is used as an excuse not to deal with it by NTs is in my view less relevant. I read link you posted, it's nothing I haven't seen before. But in truth I do disagree to an extent. NTs and ASDs do see things and function differently.

                            It's not the NTs responsibility to pander to our disabilities, but it is their responsibility to make reasonable accomodation. I think I can speak for most when I say that that's all any of us really want.

                            "crush in it's birth the aristocracy of our monied corporations which dare already to challenge our government" -Thomas Jefferson

                            by Phil In Denver on Tue Jul 28, 2009 at 02:05:14 PM PDT

                            [ Parent ]

                          •  "Equal" is not (3+ / 0-)

                            "same".  A blind person cannot drive a car.  And a person with autism lacks emotional and social judgment and awareness.  Our son can not tell the difference between "big deals" and "no big whoop"; he's really good at following rules once he understands them, but has no natural tolerance to others who don't adhere to those rules, no matter how minor the infractions are.

                            He will play at a videogame, unaware of his increasing frustration, until he starts biting himself and bashing his head against a wall because he can no longer bear the pressure he's putting himself.  Should we "validate" that?

                            No... it is our job, as parents, to teach him to recognize when he's feeling frustration, or hunger, or anger, and that he needs to take a break from whatever the situation is before he has teeth marks on his arm and bruises on his forehead.

                            Teaching a blind person to use a cane or read braille doesn't "invalidate" them.  Nor does teaching autistic people a means to read social cues, or to recognize emotional states, to which they are blind, invalidating them.  It's called "accomodation", exactly how all of our differences should be dealt with.

                            Our son's autism is never an excuse for anything, even if it is a reason for his behavior.

                            Evil is making the premedicated choice to be a dick -- Jason Stackhouse

                            by Frankenoid on Tue Jul 28, 2009 at 04:34:18 PM PDT

                            [ Parent ]

          •  My son has meltdowns (1+ / 0-)
            Recommended by:
            codeman38

            when expectations he has are not being met. He likes things planned out and orderly and if we plan something and then a random event gets in the way.. its hard for him.  But yes the best way is to give him space. Though he will say "Can you tell me now?" But sometimes I cannot tell him now..because I don't know! In my experience, the best thing is to give time, maybe say 'we will talk about this late" and then, talk about it later.

            •  same with my son. I've found that if (4+ / 0-)

              I endeavor to lose my typical reaction of "what's the big deal?" and let him come up to speed on his own, things go a lot better.  So much of this excellent diary is teaching me how important it is to not let NT behavior always triumph over atypical behavior.  Thanks again, Phil and all here.

              I love my President! Who'da thought THAT was possible?

              by livjack on Tue Jul 28, 2009 at 09:17:27 AM PDT

              [ Parent ]

        •  Of course any young child (2+ / 0-)
          Recommended by:
          neroden, miss SPED

          can have a melt down where it is impossible to reason with them, but we've noticed with our 7 yr old son, that his meltdowns are really quite something.  I agree, they just need to have some open space around them so they don't slam into anything and then time to allow them to calm down and regulate.

      •  My son sometimes has fits (4+ / 0-)
        which may have a physical aspect. He certainly doesn't want to be touched when that happens. But he feels more comfortable if I remain in proximity. So I will place him on a couch, and sit on the floor in front of the couch. Sometimes, the fit may be related to sensory issues related to GI issues or headaches. Other times it may be related to his seizure-like brain activity. If it becomes clear he is tantruming, as opposed to having a fit, I generally say "Tell it to the judge." If the tantrum is related to wants not being met, he will stop fairly quickly. If it has to do with needs not being met, as time passes, he will grab my hand and lead me to what it is he needs. The fact that my son is non-verbal can make for interesting interactions.

        Ancora Impara--Michelangelo

        by aravir on Tue Jul 28, 2009 at 07:46:23 AM PDT

        [ Parent ]

        •  That's extremely wise. (0+ / 0-)

          If the tantrum is related to wants not being met, he will stop fairly quickly. If it has to do with needs not being met, as time passes, he will grab my hand and lead me to what it is he needs

          Almost archetypically correct.

          -5.63, -8.10. Learn about Duverger's Law.

          by neroden on Tue Jul 28, 2009 at 07:51:48 AM PDT

          [ Parent ]

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