KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
"That's that cursing thing, right?"
Thanks to Hollywood, and the mass media, where Tourette Syndrome (TS) is either used as a punchline, or completely sensationalized to its most severe forms, this is what most folks "know" about TS.
Tourette Syndrome is a neurological disorder, which is defined by persistent recurring motor tics (involuntary, repetitive movements), and vocal tics, (or, more accurately, "phonic" tics) which develop in childhood or early adolescence. Both types of tics must be present for the diagnosis. Tics can range from the simple (blinking, facial twitching, throat clearing, grunting), to the more complex tics (complex series of movements, and uttering syllables, words, or phrases). The most well known symptom, thanks to television and film, is the involuntary uttering of obscenities, or socially inappropriate or derogatory remarks. This form of complex vocal tic, called coprolalia, is actually one of the most rare complex vocal tics, occurring in about 10% of people with TS.
It's been a longtime battle to try to get a more accurate portrayal in the media.
Oprah Winfrey has done some very balanced, non-exploitative shows on TS over the years, but we've also had to battle the likes of "Dr. Laura", who, back in 2001, berated a caller whose sister was excluding her son from a wedding to which all the other children in the family were invited:
"Well, I’m going to come to your party and just scream F-You, F-You, F-You every five seconds and see if you want to invite me back," she said. "...it is outrageous to call that a disability that should be tolerated at a wedding."
OPRAH AND DR. LAURA - CONFLICTING MESSAGES ON TOURETTE SYNDROME
My daughter was 5 when she was diagnosed. She had been blinking, sniffing, and throat clearing off and on since she was two, but every time I brought it up to the pediatrician, he'd reassure me that she was fine, and I was being an overanxious first time mom. Actually, I had heard of TS before, and I guess it was in the back of my mind, but although I knew that not all people with TS swear, I thought the tics had to be far more severe, to be Tourette.
Shortly after my daughter started kindergarten, she developed a very pronounced one-sided shoulder shrug. Back to the pedi we went. This time, the pedi asked me point blank if I'd ever heard of Tourette Syndrome, and sent us off to the neurologist, who diagnosed her with Tourette Syndrome, and ADHD, and told me that he didn't think medications were warranted, but that there were medications available if she needed them later. (We later did try meds, dozens over the years, but they either did nothing at all, or did nothing with the added benefit of adverse side effects. She is considered severe, and refractory, and is no longer on any meds for tics).
Flash forward a year, and her motor tics became more frequent. The sniffing and throat clearing gave way to yelping, and blurting out syllables like "DA!" and "BA!". We had to bring in a consultant to educate the school on how to handle the tics. The advice was to ignore as much as possible, since calling attention to tics will frequently exacerbate them. The adults were more affected than the kids, who seemed to ignore the vocal tics as background noise once they had an explanation.
In the fourth grade, her class went on a field trip to hear a speech by then-Treasury Secretary Bob Rubin (I know, huh? these were nine year olds), and S. was trying to suppress as much as she could, but the grunts, and yelps were audible enough that one of the event staff came over to ask that she be quiet. One whole row of fourth graders, indignantly said in unison: "she can't help it, she has Tourette Syndrome." We were fortunate in that our elementary school was small enough that we didn't have to repeat inservice training every year.
Unfortunately, middle school was a different story. Ten times the number of students, and a lot less acceptance. She had literally no friends. She has ADHD and a nonverbal learning disability in addition to TS, and the school administrators seemed too busy patting themselves on the back for their tolerance of her TS to acknowledge her learning disabilities. There were teachers who cut her way too much slack because they felt bad for her. She was barely doing any school work. We had to fight for an IEP, and then she was stuck in a class for behaviorally disorded kids where she might as well have been wearing a target on her back. She was hospitalized for major depression (another horror story for another time).
The school district clearly had no clue what to do for her, and for a long time refused to admit it. They started blaming my husband and I for her learning issues. It got so toxic, that her psychiatrist placed her on home instruction. It got to the point where we had to hire an advocate and specialists to fight to place her in a private special education school. Once the school district knew we were willing to go to hearing, they quickly approved the private placement.
She thrived at the sped school, passing the English and math exams required by the state for graduation, and received her high school diploma on time, despite missing six months of school on medical leave in 8th-9th grade. She was fully accepted by the students at her new school and made several friendships that she still has today.
Now she is 24, still has severe, full-blown Tourette Syndrome and works full-time at a boarding kennel/dog day care. Although most people in public do seem to get that her movements and noises aren't intentional, now that she's older, she does have to deal with nitwits mocking her or asking her to "stop that" on a fairly regular basis.
Still, she gets on the bus every day, and goes to her job.
As a final note, and to prove that dogs are pretty damned smart, often smarter than people, my daughter has had a complex motor tic off and on since childhood, where she raises her arm above her head and brings it down fast, palm open, stopping just short of contact. I've seen her do this tic for many years, when petting a strange dog on the head. I have never once seen a dog react to this by flinching or in any way at all. Dogs seem to instinctively get that there is no emotion or intention behind the action. They love her, and so do their "pet parents" at work.