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Jett Superior laid this on you on || June 19, 2003 || 2:33 pm

“Trust not servants who mislead or misinform you.”

~Bacon.

I left the house this morning, quite forgetting my cell phone and my slice of key lime pie.

Both of them are turning out to be necessities today. Before I go on, I’d like to say the following: Of course ‘Hollywoood Homicide’ is a horrible movie. Have you seen that Hartnett boy’s haircut??

Now, on to more pressing matters. This pisses me off more than I can say. I fully understand that you have to address things in broad terms at times because the attention span (no pun, realllly!) of the populace is next to nil in this day and age, but that little blurb is soaked through-and-through with inaccuracy and misleading statement. Here, allow me to debunk them one-by-one:

“Tourette’s disorder is a condition that causes spasms (tics) of the small muscles in the face and head (such as blinking, frowning, and head-jerking) and uncontrollable movements of the arm and shoulder.”

Actually, Tourette Syndrome is a neuro-biological disorder that causes tics, which are involuntary movements of various parts of the body that are by no means centralized. Tics can affect any part of the body. TS also results in uncontrollable vocal sounds (they run the gamut…anything from an innocuous tongue-clicking to loud huffing noises and nearly anything you can imagine in between) that are, for the most part, referred to as tics by Touretters themselves as well as those around them.

“Symptoms of Tourette’s disorder first develop during childhood.”

Not in every instance, and I’ve met Touretters that can tell you this. It does quite commonly surface in childhood, however, so a simple ‘usually’ added to that sentence would be good.

“In the teen years, Tourette’s disorder often worsens, causing the person to grunt, snort, use obscene language, and shout without being able to control these behaviors.”

Oh. Fucking. REALLY? According to all the reading (texts written, of course, by informed sources) that I’ve done, the onset of puberty causes a pretty even three-way split: The young Touretter maintains tic levels consistent with pre-puberty patterns, tics are suspended completely (this is thought to be directly correlated to the changes in brain chemistry during this time) or there is a marked worsening in the level and frequency of tics (brain chemistry changes again, natch). VERY RARELY, and allow me to repeat this for emphasis, since so many people are media-misled with regard to TS, VERY RARELY is coprolalia involved. Shouting, involving vulgarities and/or obscenities, is only present in ten to fifteen percent of Touretters.

“Tourette’s disorder can be treated with medications.”

This should read, ‘Tourette Syndrome can be treated, with varying degrees of success, with medications.’

It greatly disturbs me that this site, supposedly a medical reference tool (albeit a ‘loose’ one) is so riddled with inaccuracy. Misinformation is one of the biggest challenges to Touretters and their loved ones. Education, to sound simplistic and trite, really is the key, and it’s not like there aren’t readily-available, fact-accurate resources around to help with the simple definitions and characterizations of this disorder. Not that it’s something that is easily pigeonholed, but still….

For those of you that haven’t been around for the long term, my eldest child has TS. So does his father, my ex-husband. It’s a frustrating thing, embarrassing and even, at times, heartbreaking for them, for various reasons which I won’t go into right here because it’s just too fucking complex for this one entry to cover. I’ve written about it before, sometimes in a very raw fashion, and once in a real knee-jerk sort of way. Quite frankly, I believe education is the key and I will patiently explain to people over and over without a hint of anger in order to sate their curiousity. The latter case was where someone posted something and, at the outset, said there was no way it would change, so I responded with anger and vitriol. I’m very good at ‘Fuck You’ mode. I have to work at patience, but like anything else that I put my heart into, I am good at it as well.

So, there’s that. Anyhoo, I’m participating in the Blogathon again this year, and since the project has grown exponentially since its inception, Cat (our fearless leader, someone who is now learning the fine art of delegation) has taken on more ’staff’ and I’ve volunteered to be a monitor. I was one of the original hundred-and-one bloggers that participated and I’m proud of that fact. We were scoffed at in some circles as time-wasters and vainglorious hit-seekers. We smiled and soldiered on in spite of. I, personally, had somewhere in the neighborhood of thirty readers at the time and blogged for Second Harvest, as hunger, especially where children are concerned, is a concern of mine (funny how having your own belly stick to your spine in the past will facilitate an awareness there). We had a very modest goal collectively, something like $10K, and surpassed that goal one-hundred per. Last year, the number of webloggers involved doubled, but the dollar amounts of pledges tripled.

Also last year, seeing that several people had chosen hunger, via one organization or the other, and in light of the sudden spate of difficulty my son was having, I changed my selected charity to the Tourette Syndrome Association. I’ve been in contact with Mark Levine, my point person over there, informing him that I intend to do so again this year, and he warmly encouraged me.

So about now you all know that this is a prelude to my hand being stuck out, awaiting your charity dollars, don’t you? The Blogathon sign-ups are a handful of days away, for both participants and sponsors. I ask that, if you’ve sponsored me in the past, you do so again. I also ask that, if you are new to these parts and like what it is I do (although not even *I* have pinpointed that yet…), feel free to ask me some questions about the ‘thon, then go scrabble around the laundry room for a spare sawbuck or two. Sure, it’s free to see the monkey (me) dance on that last weekend in July, but you’ll score big points with the monkey by shelling out some change. And you know, you never know what a happy monkey’s a-gonna do.

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6 worked it out »

  1. John 6.19.2003

    Just remember that MSN stands for “malevolent shitthead ninnies” and it’s easier to ignore the gaffes that occur there on a daily basis.

    Oh, it is amazing how many times they can make the same cop buddy picture and still make it stink. I thought they would have given up after Showtime, but no.

     
  2. Sean 6.19.2003

    Why was it filed under ADHD?

     
  3. Johnny T 6.20.2003

    I have an answer to your question -the question being completely unrelated to this last post. While reading this unrelated post I was able to grasp what it is about the tone of your blog-voice that differs from the tone of your real-life voice. In your blog you sound angry and gruff with a splash of nourosis. In real-life you sound chipper and sweat with a splash of Mrs. Beaver. I hope you are excited about this. I am and I don’t know why –I just am. I think it is because realizing things is fun.

     
  4. Kate S. 6.21.2003

    I read with horror the goings on re: TS on both blogs, including all links and archives, comments, etc. I can’t believe how skewed people’s perspectives can be, how cold, how reactionary, how offensive–we are always on the outer circle of Wallace’s moonshines, it seems. (Ref to “Braveheart” naked butt scene.)

    I very much enjoyed your narrative “in very raw fashion,” and think it would make a good publication. An on-going diary perhaps? I’m sure there is a large readership out there that would be very appreciative and supportive of your honest, raw writing style.

    AND: I HAVE asked several times for people involved in the Blogathon to explain this event, as I am a new blogger, and to no avail.

    I would appreciate your generous offer to answer questions: can anyone participate? Do you really write for 24 hours straight? My god, the bandwidth must already be shuddering in anticipation.

    (Just returned from Cat’s blogathon archives from last year’s. Incredible! I wanna play!)

     
  5. Jett! 6.21.2003

    Mac: I believe the accompanying link was something like, ‘things related to ADHD’ or ‘confused for ADHD’, something…

    John: Yeah, it’s easy to ignore, but ignoring shit will not further any cause I may call my own, you know?

    Johnny: I was gonna do a post on that very thing soon. Stay tuned.

    Kate, lovely Kate: before I get started, I want to let you know that I was reading your blog last night and you and I, we have quite a bit in common. Sorry…didn’t catch what part of AK you were in? I lived in Kenai and then in Eagle River. I still miss it.

    As to the ‘thon: If you sign up to blog, you must choose a charity with a valid web presence and a verifiable contact person. You then collect per-post or flat pledges from ’sponsors’; when the thon is over they send the money to the charity, not to you. You post once every half-hour for the duration of the ‘thon, or forty-eight times minimum. You can go longer, or post more frequently if you’d like.

    It’s harder than people think, and you feel odd for days afterward, but it’s a whole fucking lotta fun. If you have any further questions, please e-mail me. I’ll be happy to help!

     
  6. Kate S. 6.22.2003

    Wow! Thanks! This sounds soooocool. Every half hour, huh? *rummaging around in drawer for Geritol and choco-covered coffee beans* 48 times MINIMUM?!!! Oh my. What if I crap out early? Guess that’s what the pay-per-post is for.

    (I neglect to put my last name or the name of my town because I’m paranoid, but it’s close to Fairbanks.)

     

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