Bachelor of Arts '69
Susan Conners ’69 was staffing a Tourette Syndrome Association table at a Buffalo health fair back in the mid-1980s, when a woman approached her and inquired, in all seriousness, about mini-tours to nearby Niagara Falls.
After patiently explaining that the association’s purpose was educating the public about a neurological disorder afflicting some 200,000 Americans and not operating tour buses, Sue had a chilling thought:
“Boy, have we got a long way to go!”
She laughs about that long-ago incident now, but only in an anecdotal way, because it underscores what much of the 1969 Daemen College—it was Rosary Hill back then—graduate’s life work has been about: creating public understanding about what TS is and isn’t, and how educators can work with youngsters afflicted with TS to insure they have the best possible learning environment.
To that end Sue has traveled the length and breadth of the country and beyond, making presentations to educators and parents of TS-afflicted youth, conducting in-school training sessions on all levels, including collegiate.
An example is a presentation Sue made at Purdue University’s College of Education in February entitled, “Tourette Syndrome and Associated Disorders in the Classroom: A Workshop for Educators and Allied Professionals.”
Sue has done hundreds of presentations about TS, mainly after she retired as a Williamsville Central School French teacher in 2002, after 33 years in the classroom. Since retirement she’s become employed in a second career, as an educational specialist for the national Tourette Syndrome Association.
In 1984 she founded the Western New York TSA chapter and has been its only president. Recently it was renamed the Greater New York Chapter because it covers the entire state north of New York City. Five years ago Sue was presented with Daemen’s Distinguished Alumni Award for her work in the field.
“The association tells me the only two states I haven’t been to are North Dakota and Delaware, and we recently started a TS chapter in Puerto Rico,” she related.
Sue has a vested interest in Tourette Syndrome. “I have Tourette Syndrome, as do my five siblings and several other family members. My mother also had TS.”
“I started with TS when I was six. I was the second oldest in the family and it never got diagnosed until I was 36. I found out by watching a (medical) television drama called Quincy and they did a show on TS. It was like watching my life flash before me,” Sue continued.
At the show’s end they displayed the national TSA’s address and phone number on the screen. “I called the next day and they gave me the name of a doctor in Rochester who handled TS cases. It took three months to get an appointment, he was so busy,” Sue said.
What is Tourette Syndrome and how is it manifested?
Essentially TS is a neurobiological disorder—as opposed to a disease—characterized by tics—involuntary, rapid, sudden movements and/or vocal outbursts that occur repeatedly. Symptoms can change periodically in number, frequency, type and severity and may disappear for weeks or months at a time. Common motor tics include eye blinking, head jerking, shoulder shrugging, and facial grimacing. Vocal activity can involve throat clearing, sniffing, and tongue clicking.
There is no known cause but considerable evidence points to abnormal metabolism of at least one brain chemical called dopamine. Genetic studies indicate that TS is inherited as a dominant gene, with a 50-50 chance of a parent passing it on to a child. Boys are three to four times more likely to contract TS than girls.
Diagnosis comes from observing symptoms and evaluating their history. Blood tests, X-rays, CT scans, or other medical testing don’t detect TS. Because diagnosis is difficult many cases may go undetected or are treated as something else.
There’s no cure, although some medications help victims control their symptoms, but it may take time to find the right one and determine dosage. And, the TSA notes, “Almost all of the medications prescribed for TS do not have a specific FDA indication for the disorder.”
Most TS sufferers go on to lead productive lives in their chosen profession and can anticipate a normal life span. Sue is an active example.
The affliction draws its name from a French physician—today he would be a neurologist—named Georges Gilles de la Tourette, who defined the syndrome of motor and vocal tics in nine patients in 1885.
“It’s a brain chemical imbalance, as with Parkinson’s Disease. With Parkinson’s people get too little dopamine; we get too much of it,” Conners explained.
“TS usually starts manifesting itself between age five and seven and the disease worsens in the teenage years when the body is going through many other changes associated with adolescence,” she noted.
Once past puberty the disease frequently slacks off and in a small minority of cases symptoms remit completely in adulthood. “I still have it—my motor ticks. I’m ticking right now,” she laughed during an interview.
“Socially and emotionally it can be quite difficult but for me it tended not to. In school it was difficult for me to write—take notes in class—so I made up my own shorthand. But I never felt it was dangerous to drive and I still have ticks when I drive, or am shaking my head as if I’m saying ‘no,’” she added.
However, in extreme cases—TS’ severity varies by the individual—“motor ticks can be very painful, or even harmful, and when you’re younger your ticks change all the time,” according to Conners.
TS can be especially disrupting in school. “Most of the kids go through a regular course of education, but many have special accommodations—extended time for taking tests, or doing it in a separate location so as not to disturb others” are examples.
Because TS is a neurological disorder many students “may have other disorders such as a compulsive disorder, and may need special accommodations. I have learning disabilities that were never diagnosed,” Conners points out.
Part of her work in schools involves doing Individual Education Plans, or IEP’s, for particular students. She also spends considerable time “educating the educators” about what TS is and isn’t and how to handle it in the classroom.
“We also in-service kids—make presentations to kids because TS students get a lot of peer rejection. Middle school can be a cruel time anyway,” she said.
“We try to show how everyone is different, and the kids are wonderful about understanding when told about it. Some people were actually afraid of people with TS. It’s the basic fear of the unknown,” Sue continued.
In educating the educators, Sue points out that while there are no clinical diagnostic tools, teachers can pass TS information along to parents. “They know something is wrong and have had the child to three separate doctors, who didn’t know what it was, either.”
When Sue discusses her TS work and how important understanding and tolerance is, she draws on her Daemen and pre-Daemen experiences.
“I’m a strong person and TS is part of me and there’s nothing I can do about that. There’s an old saying about making lemonade from lemons. I make lemon pie,” she laughs.
Sue grew up on a farm in Malone, New York, a small town in the Adirondacks, near the Canadian border. She completed her early education in a one-room schoolhouse along with three siblings, all of whom had TS. “We all had the same teacher and she taught us with her heart,” Sue recalled.
“My family struggled with this disease, and we almost lost a niece because of it,” Sue said, recalling that the girl’s tics involved a fear of choking that led her to refrain from eating for a time.
In those days travel was something Sue hardly knew. “A trip to Syracuse was a big deal and I don’t think I was out of New York until I got to college,” she recalled.
While her high school had more than one room, it was still small, an environment where she was comfortable and TS wasn’t a major issue.
“I learned about Rosary Hill from my guidance counselor. I wanted a small school and when Rosary Hill gave me a full scholarship I jumped at the chance. It was the only way I could go to college.”
Sue started as a mathematics major as a freshman, but switched to French in her second year. “In northern New York there is a lot of French and there was a French influence in my family. My grandmother’s name was Lafayette,” she pointed out.
Sue spent her junior year studying in France at the Faculte de Lettres at the University of Lyon, where she earned a Certificat d’Etudes de Letters. Upon her return to campus, Sue student-taught in the Williamsville School District and received her Bachelor of Arts degree from Daemen in 1969. In 1974 she earned a Master of Education degree in secondary French education from the University at Buffalo.
“I student-taught at Mill Middle School and they hired me after my student teaching there. She stayed in the Williamsville district teaching French for 33 years until retiring in 2002.
For 13 years she also chaired the district’s Second Language Department, and served for 12 on the Williamsville Teachers Association Board of Directors. Sue still lives in Amherst only a couple miles from campus and has been active in her condominium association for years.
“I have many good memories of Daemen. I loved the program in France and for 25 years I took students to France in the summer. It all started with Daemen.
“My teachers were all pretty tolerant of me; they were very understanding, and the classes were small. They didn’t know why I did this (ticking) but it wasn’t a problem. I also had a close-knit group of friends who were extremely tolerant. They’d stick with you,” Sue remembered.
She was particularly fond of the French dormitory where French majors lived together after their freshman year. “It was right on Campus Drive and I lived there with the same kids my sophomore and senior years. They got to know me as a person and it helped boost my confidence and self-esteem,” she continued.
Sue began her work with TS long before she retired from teaching French, but joined the TSA staff shortly after retirement.
In addition to doing hundreds of presentations, Sue has appeared on several local and national television programs including ABC’s 20/20 and has earned numerous awards both for teaching and her Tourette work.
She has also been a presenter/keynote speaker at conferences for the Tourette Syndrome Foundation of Canada, and the first International Tourette Syndrome Conference in Oslo, Norway, and did a series of TS workshops in seven Norwegian cities on a grant from the Norwegian government. Later this year she’s presenting in Spain.
Much of her U.S. travel has been funded by a grant from the National Center for Disease Control to the TSA.
In addition to personal appearances, Sue has published and/or produced CDs and DVDs for the TSA on such subjects as “Learning Problems and the Child with TS,” “A Regular Kid, that’s Me,” an in-service video for educators, and “The Educator’s Curriculum for Understanding Tourette Syndrome and Educating Children with the Disorder.”
Her most current video, “I Have Tourette but Tourette Doesn’t Have Me,” a documentary seen on HBO, won an Emmy Award last August.
“There are many misconceptions about Tourette. That’s why I’m working. My job is to work with educators. The NCDC grant allows me to travel and teach. Plus, I have the educational background as a teacher and I love being in the classroom,” Sue says.
When she isn’t working Sue admits to a love of reading and, “I love to travel.” More than once a year she hops on a plane to the U.K. for personal reasons.
And, she still recalls the headline in Malone’s weekly newspaper when she spent her junior year at Daemen studying in France. Something along the lines of “Keeping them down on the farm, after they’ve seen Paree.”
Note: Persons wishing more information on Tourette Syndrome can access it by logging onto tsa-usa.org. The phone number is 718-224-2999.
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