Tourette's/School Bullying Site"

[Donald Schneider]

If any are interested in the subjects mentioned in the title line, or perhaps might just enjoy gratuitous reading, I've recently started a website. The site features easy links to a short story I had published on an E-Zine; which, if any are interested, can be printed out to read at one's convenience. There is nothing to buy or donate to at either the site or the E-zine, nor are there any ads to endure or registration required.

The story is a fictionalized, thinly-veiled personal memoir of growing up with an undiagnosed, mild case of Tourette's Syndrome and a more severe case of the ADHD that often accompanies the syndrome. The site also includes an author's commentary that explains the story behind the story, which should only be read after one finishes the piece, if anyone would like to read it.

It also includes my essay concerning TS and ADHD which might be of interest to basically anyone who is or has children characterized as being "high-strung." Where does a tendency end and a condition begin? My views are formed strictly from an empirical perspective, as I am not in the medical or mental health fields. If anyone should disagree with my stated views within the essay, then fine. Whatever you think is best for your youngster is best. I would not presume to argue with you.

It might also be of interest to anyone concerned about the subject of severe school bullying and what one's youngster might be hiding from his or her parents; and, most importantly, why. The specific reason(s) for the bullying is irrelevant. Also, it might interest anyone who simply enjoys reading fiction. Although not devoid of humor, the piece is intended to be most poignant. It was included in the zine's Best of Quarter Anthology. If you ever wondered how youngsters severely picked upon at school feel in their private moments, here's your chance to know.

Also, if anyone would like to contribute a personal account of your--or your youngster's--trials and tribulations enduring either TS or bullying, then please write and email it to me and I shall be glad to post it on the site if you would like that. One person has thus far.

If anyone goes to the site and is interested in the topics presented there, kindly recommend it to those with similar interests. Thank you and here is the URL:

http://wwwdnschneidercom.xbuild.com/

--Don Schneider

P.S. I have posted this or similar notes on other forums and lists. I just wanted people--if anyone were interested--to know the site exists. There doesn't seem much point in having a website that no one knows about. So please forgive me if you've read this note previously. Thank you.

[Lara]

Hi Don,
Thanks for posting. I just read it very quickly.
I picked up on one thing you mention and that being the OCD and "emotional disorder" reference (I thought we were past calling it an emotional disorder years ago). You may or may not have read anything about the Prelude to the DSM V yet... some people are suggesting similar changes from DSM IV when DSM V is one day released. http://dsm5.org/conference10.cfm

I personally think it'll create more mess than there already is regarding diagnostic criteria and understanding and future developments. Hey, but that's just my opinion. It is a syndrome afterall, although when reading literature online I notice doctors seem to prefer to be calling it Disorder these days, and a spectrum of symptoms. Not all people with TS have OCD although some might have what they seem to be referring to these days as tourettic impulsions or compulsions. Seems to me that's something that is going to be the topic of heaps of interest and research in the near future. I look at it this way, not all tics are part of Tourette Syndrome, the same as not all obsessions, compulsions or impulsions are part of OCD.
e.g.

1: J Nerv Ment Dis. 2001 Apr;189(4):219-28.
Gilles de la Tourette's syndrome with and without obsessive-compulsive disorder compared with obsessive-compulsive disorder without tics: which symptoms discriminate?
Cath DC,Spinhoven P,van Woerkom TC,van de Wetering BJ,Hoogduin CA,Landman AD,Roos RA,Rooijmans HG.

Stereotyped repetitive behaviors occur in Gilles de la Tourette's Syndrome (GTS) and obsessive-compulsive disorder (OCD). The present study was undertaken to compare the distribution of obsessive-compulsive and Tourette-related impulsive behaviors in GTS with (+) OCD, GTS without (-) OCD, tic-free OCD, and control subjects. Fourteen GTS + OCD, 18 GTS-OCD, 21 OCD-tic, and 29 control subjects were evaluated using a semistructured interview designed to assess GTS and OCD-related repetitive behaviors. Each reported item was evaluated on the presence of anxiety and goal-directedness. This information was subsequently used to define whether the repetitive behavior was an (anxiety-related) obsession or compulsion, or a (non-anxiety-related) OC-like behavior, impulsion. GTS + OCD subjects reported more overall Tourette-related impulsions than OCD-tic subjects, i.e., more mental play, echophenomena, and touching behaviors but similar frequencies of typical obsessive-compulsive behaviors. Further, GTS + OCD subjects exhibited more overall repetitive behaviors than GTS-OCD subjects, i.e., more Tourette-related impulsions as well as more obsessive-compulsive behaviors. The distribution of symptoms is similar in GTS with and without OCD, and differs from tic-free OCD. These differences suggest that GTS with OCD constitutes a form of GTS, not of OCD, although the possibility that GTS + OCD patients constitute a subgroup distinct from GTS and from OCD can not be excluded by this phenomenological study. Specific non-anxiety-related impulsions seem to discriminate between GTS and OCD-tic individuals. These impulsions possibly reflect differences in underlying mechanisms between GTS and OCD-tics.
PMID: 11339317 [PubMed - indexed for MEDLINE]

I will read your pages more carefully later when I get time. There were a few things that didn't ring true to the situations I have experienced, but I know you said this is all from your perspective and I really do appreciate all the work you've put into it. Your message about bullying is an important one, and it must be stopped.

I really like what you said here at the end...

"A parent must resist the temptation to baby such kids. A parent must use his or her wisdom of years to gently, but firmly guide a youngster into the path of right direction and insist that he or she sticks with these activities or others that might prove beneficial to the child's entire life."

I think it's really easy for parents to fall into a pattern of overprotecting their child or children, especially very early after a child begins to show symptoms or has a diagnosis. I think that's human nature. In my years online though, it's been a real delight and really wonderful to see that totally change in the majority of parents and others as they begin to learn the real facts and read the research and they become once again able to realign their parenting skills back to being from parent to child, rather than from parent to a child who has Tourette Syndrome or whatever. There are times when children do need protecting though, and in children who have multiple diagnoses, it's a lot more difficult. This I know. My son also has Asperger's Syndrome as well as his tics and other stuff and bullying in school was actually a very real problem for us for some years, particularly during the ages of around 10 to 13. It's a very serious matter indeed and I applaud your efforts and suggestions regarding bullying on your site.

will read the rest of your site later,
thanks.
Lara

[Donald Schneider]

Dear Lara,

Wow! Aside from being obviously erudite and extremely intelligent, you have certainly done your homework on this subject! Are you in the medical or mental health fields? You are also most thoughtful, which I greatly appreciate.

I think I say twice within my site that in no way do I assert that any "one-size-fits-all" solution will be effective for every child. I just presented advice that I think would have greatly helped myself as a youngster, as my young character is presented in the story.

With myself, it is the constant "noise" in my mind that so affects me. The habitual chatterbox inside my head has always made it most difficult for me to concentrate my attention upon outside stimuli. The constant self-reflection can be painful, as whenever I would think about moments within my life that I'd rather not revisit--but seemed compelled to like someone who can't seem to stop picking at a scab-- and would bring on the onset of the tics, mostly head twitches and facial grimaces, as an attempt to divert my mind from the painful memories.

My dad used to kid me that I sometimes looked like Humphrey Bogart did when he would do that on screen. Still, my parents never thought much of it, as I hadn't either. As a young man, I even had some passing problems with verbal tics, though I could usually control it through sheer willpower. Public lapses were rare, but did occur on a few occasions; once with potentially dire consequences. (That's when I sought help and was diagnosed for the first time.)

As incredible as it might seem, I could never figure out when I was a kid why I was having the problems I was having at school. There was absolutely nothing about my physical appearance or intelligence that would have seemed to merit such singling out. (I had been skinny, but so were many kids in the pre-video game age.) My youthful tormentors seldom gave specific voice as to exactly what they found so humorous about me. Thinking back, I now recall certain instances when others would mock my tics, but I hadn't understood. ("He told the boy that he didn't always realize how others saw him.") That's absolutely true, as I realize now.

The kids around my neighborhood had grown up with me and, like my family, were so acclimated to me that they hardly seemed to notice any longer any idiosyncrasies I might have had, or at least thought little of it. I didn't give a hoot about the kids at school, and all I wanted was for them to leave me alone. If the entire class had "sent me to Coventry" (shunned me), I would have been ecstatic! I had plenty of good friends after school.

If you should eventually have time to read the story, please be patient with it. It is not until the first few pages of the second half of the story (the second link) that the relevance to these subjects will become apparent to you and all. Those few pages just seemed to spring out of my mind from some distant, buried memory and into my fingertips. They were meant to have a "hit you in the gut" impact, especially as there is no prior indication as to what is to come. Writing those pages was the closest I've come to crying since around age seven.

The beginning of the story is scary and is, in part, the same device a skilled stage magician uses to distract an audience from what is really happening--misdirection. My largest concern with the story was that it would be too obvious, too soon to readers what was really going on. This strategy must have been successful, since only one person told me that she had caught on very early. All the rest said they did not until it was almost spelled out. Other reasons are explained in the commentary I wrote, to be read after reading the story.

Thank you again for your most thoughtful and considerate reply. I shall print out the link you kindly provided for study and reflection. I can see that I have far more to learn regarding this subject than to teach. I pride myself on being educable--a corrective reaction from my youth.

Best regards,

--Don

[Donald Schneider]

Upon reading over my reply to Lara, it occurred to me that I might not have expressed myself well or clearly. When I referred to the constant "noise" within my mind, the "chatterbox," I was not referring to hearing voices as sometimes occurs with schizophrenia. I've never had anything even approaching a psychotic episode in my life, and have almost no TS symptoms left as well. I was referring to my "habit" of constantly thinking to myself in an inwardly verbal manner. The childhood hyperactivity is pretty much gone as well, though the ADD does remain to some extent.

Having said this, I am in no way demeaning those afflicted with schizophrenia, a condition they can no more help than can those with TS. I simply wanted to provide a clear picture, as I did with my younger character within the story.

Thank you.

--Don

[Lara]

:o

I appreciate your kind words, but I'm only intelligent about 1% of the time these days. The other 99% of the time I race around in circles trying to find where I left it. ;) Was a nurse before I was a parent but that doesn't really have much to do with my interest in keeping up with the research. My mind just tends to like following leads and I tend to have a memory which works pretty well in some ways, although I have trouble remembering what day it is. LOL Just kidding.

I understand what you mean about the chatterbox inside. I guess I call that self-talk. I was just talking about that on the autism forum the other day when something came up there about hallucinations and hearing voices. I've seen people get extremely concerned when their very young children describe that voice inside their head that is telling them they must do something. Understandably so, but I think that children say there's "a voice" because that's the only way they can describe it.

Sometimes the chatterbox inside me gets a little too loud.

OK, gotta dash. Monday morning here and I'm late for something.

[senny]

aww come on lara, i'd say you're intelligent at least 2% of the time.. give yourself a little credit! ;) :D