Wednesday, June 18, 2014

Shackles


It's about access. Getting where you need to be, trying to get the info you want to know about. I've said recently I am hungry for new information.

I wasn't bullshitting. Do I ever. OK, I mean recently?

I've been looking for new stuff. Hardcore. Not PORN, you sicko. OK, maybe a little. Jokes aside, when you do research on Google or Bing or anywhere else, you run into a lot of things called 'abstracts'. An abstract (or research abstract) according to my good friend Wikipedia, is a brief summary of a research article, thesis, review, conference proceeding or any in-depth analysis of a particular subject or discipline, and is often used to help the reader quickly ascertain the paper's purpose.

And abstracts, at least insofar as it pertains to surfing for data as a Special Needs parent on the Internet, pardon my French, are FRUSTRATING AS SHIT.


The best analogy I can think of is that of a super hot woman, say, I don't know...lemme think, maybe a Scarlett Johansson, on an awesome date who lets you get all the way to third base, does all kinds of stuff to you as well, then says 'Um, we need to stop, it's my time of the month.'

WHAT!?!?!

You could have said that thirty minutes ago! Not that I wouldn't have done these things, mind you, I'm no jerk, It's just that my mental approach would have been, well, it would have been a little different, that's all. I wouldn't have, as Ray Romano once put it, 'activated the launch sequence'.

Why do research abstracts on the Internet suck it so badly? They give you a tiny TASTE of a decent bit of information, but nothing of real substance, and unless you have some kind of decoder ring, you can't access any of the article or any of the data.

You have effectively wasted your time and effort, and found yourself at another one of those Dead Ends. And we don't like those Dead Ends, do we family? We are sick of them, because time and effort? They aren't something that we have plethora of to begin with.

So I ran into a couple of FUCKING ABSTRACTS recently. Crap. But one of them kind of peaked my curiosity, because it had two things on it that sparked my interest. One was a date of 2014. That's something to note. So much shit is OLD on this here Interweb. The other, as you can see in the file, was that it showed what seemed to be a parent volume called Comprehensive Guide to Autism.


I went and found that parent volume, wasn't hard to get to. I did find it weird, still do that there is no 'The' or 'A' in front of that title. But hey...to each their own. For some reason, maybe just because everything has me on edge lately, that bugs the hell out of me though.

All it tells me? Is that there is a possibility of another out there that is better. If it is not THE guide, well, then it ain't THE guide. Get my point?


I noticed the Download the PDF link, so I did. Of course, nothing. Just a Table of Contents. I should have read the words Table of Contents ABOVE the link, but me am dumb, I mean a COMPREHENSIVE Guide to Autism? Even though it is not THE guide? Can you believe it? But HOLY SHIT ON A HAT, what a Table of Contents it is. Just LOOK AT ALL THAT STUFF!!!

According to the PDF, this thing is MASSIVE. Five volumes of research papers grouped together on ONE subject. The subject of Autism. And it is copyright 2014, which means the data could be very, very new and relative. A wealth of knowledge. THOUSANDS of pages of material that one could spend a lot of quality time going through and I'm thinking at the very least one, maybe two things could be learned. You would think...right?

Then I saw there was an ISBN number. I figure, what the Hell, I'll give it a shot. Couldn't hurt. I plug it into my search engine. Amazon pops up. That's nutty. Amazon, but no actual book. For shits and giggles I re-enter the ISBN number into Amazon directly. Well would you look at THAT!?!?

It actually, truly IS FIVE FREAKIN' Volumes, a physical set of books you could hold in your clammy, stress-induced sweaty hands, if that is your thing. Real live books, not stress. Hardcover to boot! For the elitist who digs that shit. No WAY! Waddya know? FREE SHIPPING. Isn't that just the nicest thing you ever saw?


Hey hold the phone. Five books...cost $1,282.50!?! I know I just had my eyes checked and I am supposed to go back this Thursday to actually pick out new glasses since my appointment ran long last week, let me look at that again. Has to be a mistake. No books can cost that...much...

ONE THOUSAND, TWO-HUNDRED AND EIGHTY-TWO DOLLARS AND FIFTY FUCKING CENTS!?!? FOR FIVE BOOKS!?!?

And you just have to have the fifty cents on there, because $1,282.00 just isn't quite enough. Oh but I forget my manners...I'm sorry, my bad...this is a SALE PRICE. The actual price is $1350.00. I should be grateful for the 5% savings. I am so very, very sorry for my outrageous behavior. There are only five in stock, but fear not! More are on the way! YIPEEEE!!!!

Deflated, I had to find out if this was for real, so I dug some more. Looked at the home website again. This Jerry Springer website that was originally selling it. OK, just Springer, but it felt like a Jerry Springer horror show of an episode. Sure enough, even though the convoluted Excel Spreadsheet that you download for pricing was about as comprehensible as a Stanley Kubrick film, I managed to make my way to a page that had the pricing listed in a manner my pea brain could understand.

The pricing was confirmed.


I'm flabbergasted by it. Unreal pricing. Breaking it down off the original price? That is $270.00 per book. No book is worth that. None. Well, wait a second. A book written by Scarlett Johannson, directly to me, personally and to no one else, with photographs that were taken for me and no one else that show a little more than what you typically see on the Internet? I'd go over $300.00 for that.

But not much higher.

On the one hand, I get it. It's a series of medical journals, and doctors and other people who write all this stuff all expect to be paid ridiculously insane amounts of money for publishing their papers. But the fact is that much of their research, not all but I have to imagine some part, is funded by taxpayer dollars, and it bugs me that I, as a taxpayer, can't get access to the results.

I mean...if any amount of taxpayer money, and I mean one penny of it, went to any portion of that five volume set, then I believe that I should be able to view what's in it. Period. Because technically? I helped pay for it's publication. ALREADY.

That's a hard thing to prove, and I know I just sound like a whiny bitch. Maybe that is what one becomes after a while...jaded and frustrated. I spent this afternoon driving my son home. Had a fantastic day at his Special School according to the DCS (Daily Communication Sheet). For reasons as yet undetermined, he had the King Daddy of all Meltdowns on the highway halfway home. Biting himself, kicking at his brother, screaming.

I had to pull the car over. The usual attempts at soothing him weren't helping. I discovered that by removing one of the straps of his saftey harness, a strap that has been used a thousand times before and he has nevr had issue with before, seemed to calm him down just enough for us to get moving again. the strap was not too tight, was not hurting him, he just decided this was not something he liked.

Today.

I had to move Carter to the front seat, and drive both boys home illegally (Carter is too young for the front seat). Not before Bennett had bitten me in the arm trying to get him as safely secured as I could, kicked me in the face twice and knocked my glasses off my face. I was a sweaty, drenched mess, and as I was driving the rest of the way it was all I could do to concentrate on the road and not the stabbing pain running up my neck and shoulders, all stress related.

During the ride, I thought about this guide, This comprehensive guide. Wondered if there were answers in there. Not just for Bennett and I, but for ALL the other parents on the ragged edge who watched their kids suffer and agonize through every single day.

But how can I know? I DON'T HAVE ACCESS. Unless I want to drop that kind of cash. And friends, I don't know about other families, but I don't have those kinds of extra funds just lying around. And when I do, they get sucked up by other things easy, like $900.00 Special Needs strollers and other stuff very, very quickly.

So, what now? Nothing. Instead of getting access to that meat, we'll have to get by on whatever I can find that may have been dropped on the Internet floor somewhere, anything to keep me nourished with some new information that I can use so that maybe we can take a couple of steps forward.

It isn't easy, and it isn't comprehensive, but what about this roller coaster ride ever has been?

OUT.

13 comments:

  1. Looked them up on ebay....still outrageously priced! The authors have written other books together and those are in the 250$ range. For that price they had better come and read there books to you in person. I have asked my sister, the library guru, to find out where those 5 volumes are in library land, to see if they are available to be checked out. Worth a shot.

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  2. Find out where they research or teach and CALL THEM. I did that back in the day when there was no Internet, where "abstracts" were in big books in the public library or I got a friend who was a nurse to copy them from some archaic medical library, and then I'd track them down and CALL THEM. I suggest you try that. And I agree with you totally that the inaccessibility of information is bullshit.

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    1. So you're saying I should CALL THEM?

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  3. Ken - I sent my sisters reply to the email addy I have on file for you. If that addy is invalid send me the current one and I will re-send, she tracked it down to the libraries that have it. Sometimes colleges will loan other colleges books, so see if the closest university can get it on loan for you.

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    1. That e-mail works and I got it, thanks.

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  4. I know two ppl in your life with possible college library contacts who could get individual articles if you send the reference. I'm one...

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    1. You got my back? You just wanna look at my butt, don'tcha?

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  5. Ken,
    Welcome to the wonderful world of scientific publishing and people wonder why libraries are going broke while publishers get rich but I'll spare you that rant. As I librarian I highly recommend you or anyone doing research online going to your closest university library and seeing if they have access to the item there.

    Most universities libraries will let you access their databases from their computers (meaning you have to be on campus) or will have a community user card (OSU which I believe is close to you has ones for visiting scholars, alumni and members of the friends of the library. I'd call and see what exactly you need to qualify for any of those or if there is a better option. http://library.osu.edu/find/borrowing-and-lending/circulation-services/circulation-faq/borrowing-privileges/courtesy-card/ for more info.) which means you pay for access but $100 is still better than the price of those books and you get access to all of their resources ( which can include CDs and DVDs too.).

    Also I highly recommend you becoming best friends with the subject librarian (At OSU Carol Powell is the subject librarian for Allied Health Services 614-292-4871 or email her at powell.225@osu.edu) They will not only know how to help you access the information you've already found online but will also know other resources that might be of use and show you how to use them. They may also know of others in the academic community that may be doing research on a given topic. Us librarians love to network and rabble rouse and will often do so for free or a beer.

    If you need any help please feel free to contact me and I will happily do what I can
    to help.

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    1. Wow, now THAT was one amazing reply. Funny this post. I must be mis-reading my stats, because I thought this blog had very small readership, and for some reason? Got a lot of responses to it, mostly private. Stirred up a bee's nest. Had no IDEA the subject was so heated.

      I was just being snarky, I don't really think I deserve the books for free, I think I will write a full follow-up to that effect because of the mail I got, but I did want to ask you...do you happen to know, and if you do not it is cool I can find out, if an OSU employee (my wife happens to be one) would be eligible for a campus library card?

      Thanks for the info...I will study it and dig deeper. Also got some great info from some of the people who wrote me and some old friends who reached out. I still don't fully understand what this world is all about? As far as what exactly this tome is? But hey...like I always say...Me am dumb.

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  6. Usually any employee or student can access the thousands of journals that universities subscribe to, for free. Call OSUs library and ask.

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    1. Thanks Ellen. That was my plan, to go through OSU, my wife was already in communication with someone at the library, but recently someone in the community with some access helped to to get access to the digital version of the books. I intend to write a follow-up, not so much to name this person rather to refine my position (I'm not sure I was clear about some things) and also respond a lot of personal e-mail I got! :)

      One question...I get notifications through e-mail, and it is pre-coffee...I clicked 'Ellen' to respond, not 'Shackles' and noticed you write a blog. It said in your profile you are a Metalsmith. My older son Carter is fascinated by this, thinks it is a dying art.I'd love to encourage the boy. Of course he envisions huge smelters and forges and stuff. Do you write about how you got into your career at all in your blog?

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    2. I just wrote a long reply which appears not to have posted. I'm not the brightest bulb on the technologically savvy tree but usually I can at least manage to reply to posts on the interwebs.

      In any case, what I said was that I'm a silver/goldsmith so I make small scale metal objects like jewelry, ornaments, etc. Wedding rings, necklaces, earrings. It sounds like Carter is interested in blacksmithing which IS a dying art, although there are still art schools and art centers that offer courses and workshops. He could get an MFA in blacksmithing, just take courses without getting a degree, OR get an apprenticeship as a blacksmith; all are viable ways to break into the world of metalwork. I took college classes but didn't get an MFA.

      Also, there are lots of videos on YouTube (involving forges and smelters!) of blacksmiths making awesome things. He might enjoy watching those. I do!

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