MISSION The Tourette Alliance is based in Northern Ireland and provides resources for information, support services, access to state-of- the-art information on current research and medical treatments for Tourette Syndrome, Tic Disorders & Co-Occurring conditions. The organization also… Read MoreLearn More
Here at the Tourette Alliance we’ve been excited about the start of Tourette Syndrome Awareness Month and thinking about all of the things we wish we could share. After all, there’s far more than 30 things that are important, how do we chose?! The understanding that Tourette, a neurodevelopmental spectrum disorder, is far more than just tics is at the top of that list – yet after reaching out to those in the community we realized that there’s a lot of misunderstanding about what tics actually look or sounds like – other than the depiction we see in the media.
The diagnostic criteria is for Tourette Syndrome is actually pretty simple: At least 1 Vocal Tic & 2 Motor Tics that may wax and wane in frequency but have persisted for 1 year and that start before the age of 18.
Which brings us to the tics themselves. What *are* tics?
“Tics are involuntary or semi-voluntary, sudden, brief, intermittent, repetitive movements or muscle contractions (motor) or sounds (vocal) that are classified as simple or complex”
We’ve compiled a list of examples of both simple and complex motor and vocal tics below – yet these are only examples. Tics can be as varied, interesting and diverse as the individuals who have them. ❤
Trouble On the Line
My son was nine years old when I received a momentous telephone call while at work. The call, which came from his school, still resonates within my memory. The principal hurriedly explained that I needed immediately to retrieve my son. He had gone under the classroom desk and was refusing to come out. Worse, he’d become quite emotional and was scaring the other children, forcing staff to remove them from the classroom.
Connor, my son, had been diagnosed with Tourette Syndrome, a neurodevelopmental disorder, two years earlier. Like most with Tourette, my son’s tics came with OCD, sensory processing issues, anxiety, learning disabilities and difficulty sleeping. I’d spent more time than I could count repeatedly explaining Tourette to all who would listen, especially at the school he attended, only to realize during that one fleeting phone call that it all had been pointless. I knew in my heart that there were things that might have been done well before my son ended up beneath that desk; I also knew that I had been unable to express that in any actionable way to his teachers.
As I left work that day, I knew well that my employer wasn’t thrilled; this wasn’t the first time time, nor would it be the last, that I had to leave important work incomplete to attend to an issue at my son’s school. As I felt the overwhelming weight of the situation, it helped to realize I wasn’t alone.
Frustrated Schools, Misunderstood Children
“It’s put a strain on our business,” said a friend whose 12-year-old son has Tourette Syndrome as well. “We’ve had to employ more staff simply to have someone on call because we can never be sure when the school will send our son home. On top of that,” she said, “he’s doesn’t even understand why he’s being suspended from school and ends up feeling betrayed. He doesn’t want to go back.”
Thirteen-year-old Kade’s father had a similar experience. “The excessive school suspensions for behaviors that he had no control over were very stressful. I’m a single parent, so there wasn’t anyone else to help when the calls came in. I’d have to leave work or repeatedly take phone calls about my son’s ‘inappropriate’ behavior. It was also stressful for my son. Getting suspended made him think he was a bad kid, and that lowered his self-esteem.”
Talk to a group of parents and you’ll soon discover that the list of Tourette-related school incidents is long. Eight-year-old Clare was suspended for being ‘racist’ after blurting out a comment about the race of a fellow student. Eleven-year-old Paul was almost expelled from school after he heard ticking from another child’s backpack and screamed that there was a bomb in it, causing panic in his fellow students. Even though both of those suspensions were eventually overturned, these children were left feeling anxious every moment they were in school…afraid that their bodies would betray them and symptoms they had no control over would get them sent home again and the label of ‘bad kid’ firmly affixed.
Why Names Matter: Labeling Theory, which we’ll talk about more in a future post, holds that deviance is not an inherent tendency of an individual, but instead focuses on the tendency of majorities to negatively label minorities or those seen as deviant from standard cultural norms. Sociologist George Herbert Mead posited that, “the self is socially constructed and reconstructed through the interactions which each person has with the community. Thus, if the community labels an individual as “deviant”, the individual will integrate this label into his sense of self.”
Road to Recovery
Like the other children, my son had become withdrawn, anxious and depressed. He hated school and often suffered from physical symptoms brought on by the stress, including headaches and stomach aches. There were days I couldn’t get him in the door at all, and days where I won that battle only to be told by the school that I needed to come get him. Everyone was exhausted and a relationship that I had once cherished between my children’s educators and my family was now tense. I truly believed that this would be my child’s future.
Yet, five years later, my son is now a respected and confident student who adores school, loves his teachers and who has a thirst for knowledge. If you’re curious what miracle occurred in that time, then you may be happy to discover that the change was brought about by the way in which we communicated with his school. It took the help of an advocate, but after years of stress we were able to work with the educators and support staff by simply taking a step back and focusing on the bigger picture. Where once I’d given his teachers reams of information on Tourette Syndrome, we now looked instead at what goals we might achieve together, and how we could work as a team to achieve them. Once we helped them understand what Tourette Syndrome truly looks like in a classroom setting and what my son’s needs were, the situation went from one of tension and fear to one of academic success.
I’m Rubber, You’re Glue
The biggest hurdle was being able to convince them that Tourette is more than just Coprolalia, the involuntary vocalizations that are obscene or socially inappropriate. We were able to explain that tics aren’t just what are often depcited in film and television and that, as a syndrome, there was far more to Tourette than what meets the eye. Stereotypes are difficult to overcome, and while possible, it can sometimes take a lot of time and an immense amount of patience from all sides.
One school principal with whom I spoke explained that, unfortunately, there isn’t a lot of information on Tourette Syndrome available in schools. “I do think parents will have to bring the information rather than the schools looking for it,” he said. “I think some parents may have to bring the information several times.” Sometimes, rather than the parent, it requires another professional to get the point across. For our family, an educational advocate was able to express in ways we hadn’t been what was happening in the classroom.
The mom of Wren, 13, remembers a similar experience. “Wren had been coming home crying, saying she hated school and refusing to return in the mornings. It turned out the teacher was repeatedly making an example of her as ‘what not to do’ in front of the entire class. He’d also ding her on the demerit chart constantly, only to subsequently remove the demerits later, saying he understood that she couldn’t help her tics. During a school meeting, the Occupational Therapist called him out. She told him that it was like telling a child in a wheelchair that since they couldn’t run across the gym like the rest of the kids, that they didn’t get the cookie. This example sticks in my mind every day, with every kid with Tourette. It was pure heartbreak for Wren – and us – for her to live through public humiliation daily.”
Another mom recalled how the professionals working together helped create an environment in which her son thrived. “Daran’s form teacher and Special Education Needs Coordinator (SENCO) worked with all of the other teachers in his primary school to educate them about Tourette, particularly about my son’s anxiety.” Just by discussing it with others teachers, these educators were able to make a huge difference in this family’s life, beginning with the ability to completely dispel her son’s anxiety.
“The school has been totally amazing. We went from struggling to get him into school to totally confident about it. His tics have gone down dramatically too.”
Elementary and Beyond
The educational needs of institutions don’t stop when a child turns 18. One university student explained that his ability to complete a degree all came down to his Disability Liaison Lecturer. “She is so amazing at what she does,” he said. “She sent an email to all the staff letting them know I had TS and that I would manage it in my own way (sit near the door if I have to leave for a tic break to avoid disrupting others) and that I could leave at any point. As a result, my lecturers have all been amazing and so respectful that they don’t even acknowledge or react to my tics. I would never have been able to complete school without her help. Even before my interview they were asking how they could facilitate me and my tics and how they could make the interview process more accessible and fair.”
Other times, it’s the simple, easy fixes go a long way in helping a student with Tourette. One mom explained that she’s found that teachers sometimes feel like they need to be experts in TS. “I honestly don’t think they need to understand every disorder. Letting them know we don’t expect them to is a help. Really, they just need to accept that, in the case of TS, the behaviors aren’t controllable. I can still remember my son’s teacher telling me I needed to find a teacher that specializes in educating kids with Tourette. People are different, and you don’t have to be an expert to know that.”
Bright Spots of Hope
When educators “get it,” the results are extraordinary.“Our first experience with a teacher who gets it was when we told the 5th grade teachers he blurts out random words in class,” 15-year-old Henry’s mom recalled. “We were expecting the normal response of ‘he can’t do that’ and that ‘it disrupts the class’. Instead the response was, ‘who cares, we’ll just ignore it.’ I started crying. There was hope for a better year. In fact, that year was amazing. He lost a few of his tics when he knew he could relax.”
“Having a school that misunderstood Tourette Syndrome set my grades back a few years,” said fourteen year old Raymond. “It caused me to be separated from my actual grade level classmates. They thought I was undisciplined and had no responsibility. A lot of my teachers thought that I was a lost cause – all except one. Honestly, if it wasn’t for that one I wouldn’t be here today. Now I’m performing at a much higher level than my peers and can’t wait to attend university.”
Trent, 12, says the simple act of his teacher allowing him to go outside to finish a tic or letting him move seats if he wasn’t comfortable helped his anxiety, and subsequently his tics. “Being able to do those things made my tics go away. Instead of ticcing all day long like I had before, I probably only ticced once or twice a day where it was noticeable.”
Now an adult, Kye, who has Tourette Syndrome, OCD and ADHD, recalled how her teachers’ understanding helped her excel in school, eventually earning a Master’s degree in Library and Information Science. “They encouraged me to communicate actively with them, so that if I was having a challenge with an assignment or deadline, they could work with me to create a plan that worked for both of us. They knew I was interested in learning and basically cared, that I just had a hard time managing my time so they worked with me.”
Looking back on my son’s educational path, I can see that the struggles made him the person he is today. Yet I also wonder how much further he might have gone had we been able to bridge the gap and find partnership with the school much earlier.
Jana, a close friend and mom of a teenage girl with Tourette Syndrome, feels much the same.
“There were years of triumphs and heartbreaks, small, large and in-between. My favorite were the little triumphs, because each one was so remarkable,” she said. “My daughter has come so far, and with the help of many. I would never want the negativity of the sad times and the teachers who didn’t get it to overshadow how she got to where she is now–an amazing young woman who loves to help everyone just like all those teachers who did get it and who helped her along the way.”
Editor’s Note: The Tourette Alliance will be offering a free, full day workshop for educators and support staff at their 1st Annual Conference on Tourette Syndrome, Tic Disorders and Associated Conditions on August 5th & 6th. For more information can be found here, or by contacting firstname.lastname@example.org
Tourette Syndrome: More than Tics – Kathy Giordano, Educational Specialist TAA
School Anxiety: What Can We Do, Advice For Schools – Susan Conners, M.Ed.
A Workbook for Conducting a Functional Behavioral Assessment and Writing a Positive Behavior Intervention Plan for a Student with Tourette Syndrome – Kathy Giordano, Educational Specialist TAA, Susan Conners, M.Ed.
*Some of the names have been changed to protect the identity of those who contributed to this post