This is Part 5 in a series about Tourette Syndrome. If you haven’t read the prior four posts, you can catch up on them HERE.
(Road Trips with tics can be especially challenging. A sweet, quiet moment of rest on a Road Trip in 2011)
As I began writing this series about Tourette Syndrome and my family’s experiences with this neurological condition, I was very intentional about consulting my children and enlisting their help. I especially wanted you to hear directly from them. To tell you the truth, I had a couple motives for this. First, I think it’s important for you to read the first-person account of what it’s like to live with Tourette’s in order to better understand what TS is all about. So your education and information was one of my motives. But just as importantly, I asked Rachel and Silas to participate in this conversation because it is important for them to practice articulating what Tourette Syndrome is, because they are learning to be their own advocates.
From the very beginning when Rachel was diagnosed at age five, Patrick and I clearly explained Tourette Syndrome to her. She knew something was going on with her body. She is the one who had tearfully told me she had to blink the beat to music. She knew she was twirling around in circles when she was excited or nervous, not because she wanted to, but because she felt compelled to. She knew she was sitting in a neurologist’s office for a reason. I had typed up a list of all the quirky behaviors so he could read them rather than detailing this laundry list of weird behaviors right in front of Rachel, but she still knew something was up. And because Rachel had to endure an EEG and an MRI and I know that sometimes children’s imaginations can be far worse than reality, we wanted to reassure her with the facts. We were eager to explain Tourette Syndrome to her, and she seemed relieved to know that all of her spinning and stuttering and blinking and sniffing had a name, that she wasn’t the only person ever to do this.
Right away, we equipped Rachel with facts. Believing that prejudice or teasing or bullying stems from ignorance, we aimed to arm her with information in a way she could easily articulate to others. Within weeks of being diagnosed, Rachel was asked by one adult if she needed a tissue, if she had a cold. “No,” five-year-old Rachel replied, “I have Tourette Syndrome and sniffing is one of my tics. I can’t really control it.”
On another occasion, I heard her explaining to someone, “You know how when you need to sneeze, you just sneeze. You can’t really help it. That’s what tics are like. My body just moves on its own. I can’t really stop it.”
When she was in first grade, a classmate was annoyed with this little grunty noise Rachel made. The little girl insisted Rachel had to stop. But Rachel just shrugged and said, “I can’t help it. I’m sorry it annoys you, but I can’t stop. It’s a tic.” Her extremely understanding and Tourette’s-educated teacher quickly stepped in to explain the concept of tics to Rachel’s classmates.
On her first or second day in public middle school, Rachel encountered teasing or bullying for the first time. A classmate Rachel had never met came up to her, pointed to a group of students and said, “You make weird noises and faces. We’re all over there making fun of you.” Then she proceeded to re-enact their mocking of Rachel’s tics. Rachel thought it was incredibly stupid both to make fun of a stranger and to straight up tell the stranger you’re making fun of her. Because she’s a lot like me, Rachel’s facial expression probably revealed these feelings. As she has done since she was five, Rachel looked at this would-be bully and said matter-of-factly, “I have Tourette Syndrome. These are my tics. I can’t help it.” And she walked away.
Those kids never made fun of Rachel again. That would-be bully was in her art class and actually went out of her way a week or so later to stop by Rachel’s table to tell her, “Hey, you’re a good artist. I think you’re the second-best artist in the class.” As she recounted this at home after school, Rachel laughed about the “second-best” compliment and chose to view the odd comment as a sort of apology from the girl.
This past school year, Silas feared his tics were disturbing his classmates, so he was holding them in. As I explained, if he holds in tics, he can only think about not ticcing. So Silas was not getting much work accomplished at school. I offered to go to the school and help Silas explain Tourette’s to his classmates so he could stop worrying about ticcing at school. To be honest, part of my motive was purely selfish — I did not want to spend hours each evening helping him with work he should have completed at school.
Rachel asked if I would check her out of school early so she could come along. Silas was very excited to have his big sister come with us to talk to his class. That afternoon, the three of us explained Tourette Syndrome to both Silas’ class and the neighboring buddy classroom. Silas and Rachel handled the Question and Answer segment like professionals!
When I met with Silas’ teacher to discuss accommodations (like chunking tests, allowing him to walk to the restroom or water fountain to release tics, permitting him to keep a stress ball in his desk, etc.), Silas came along and participated in the conversation. I encouraged him to tell his teacher what would help him and what would not. You see, my job as a mother is to work myself out of a job, so I am teaching him to be his own advocate, to understand his needs and express them clearly.
At the same time, we have been straightforward with Rachel and Silas from the very beginning that Tourette Syndrome is never an excuse. I told them each right away, “I will be your greatest ally, your best supporter, your advocate. I will go to bat for you. So you must be honest with me. Never say something is a tic if it isn’t because I can’t help you if you aren’t honest with me.” And they certainly aren’t perfect and I’m sure there are times they have not been completely honest with me about some things, but I believe they are honest with me about this one thing because they know how important it is. So when they are making annoying noises in the van and I say, “Is that a tic?” they tell me the truth. And if they say yes, then I suck it up and endure. And if they say no, then I tell them to knock it off because they’re driving me batty.
During especially hard times in school, I have told Silas that he will just have to work harder than his classmates to pay attention and focus and get work done. That’s just the way life is. We do not view school accommodations as a way to make things easier or to get him out of work. We view accommodations as strategies to help him be successful in school. My job is to help him figure out those strategies to equip him to succeed, and his job is to work hard and not let Tourette’s be an excuse for failure. So far, we’re both holding up our end of the bargain.
When Rachel was first diagnosed with Tourette’s, I grieved and sobbed. My greatest fears were that she would be different, that she would be made fun of. We have learned that confidence and straightforward information most often dissuade teasing or mocking. As for being different — Tourette’s has made Rachel and Silas different. They have learned a strength of character and self-confidence and self-awareness that they may not otherwise have known. They are both empathetic toward others with differences. Tourette’s has made our entire family different in some ways. The clicking and grunting and singing and howling and repeating, the snapping and tapping and stomping are teaching us all patience and tolerance and grace.
Not everyone has tics annoying her or distracting him, but everyone has something to overcome. Everyone has something he must work harder for. Everyone has something she needs the patience and understanding and grace from others for. Tourette’s is just our family’s daily reminder to give that patience and understanding and grace to ourselves and others.