By Eryn Travis
I never intended to start a doctoral program, and, certainly, never expected that focus to be about communication and media representation related to Tourette’s Syndrome. Yet, just like receiving a “surprise” TS diagnosis for my son, here we are.
Recently, I’ve had the privilege to interview several other TS caregivers about the type of supportive communication – verbal and non-verbal messages intended to make someone feel better – that help and that hurt. It has been an honor that these caregivers trusted me with their stories, and I have enjoyed every conversation. Although this work is in progress, a pattern is starting to emerge that can help those in the caregiver’s network find just the right words to say.
Like many other stories I’ve heard, my son’s Tourette Syndrome diagnosis seemed to come out of the clear blue sky. Yet, on the day he was diagnosed, I had an experience that many might consider unique: an acquaintance said the perfect words of comfort to me. Although these words were delivered nearly 10 years ago, I trace her advice as the start of my passion to advocate for those impacted by TS.
So, what were these words of wisdom? What saintly prose or profound meaning drifted through the universe to my confused and bewildered mind? You may want to lower your expectations.
As I approached the bus stop that day, my friend noticed my stress and asked what was wrong. I blurted out “Andrew has TS.” She looked at me, and then looked at him as he stepped off the bus and said, “Well, I wouldn’t worry about it. He’s handsome, so I don’t think anyone will notice.”
After three hospitalizations – including one for a medicine that almost stopped his heart – combined with a jumping, seizing and gasping tic that made it impossible for him to walk, eat or breathe, I think it’s safe to say that people noticed his tics. I also appreciate that, if read without context, her advice might seem almost hurtfully shallow.
However, to me, it was the reassurance that I needed to hear – at that moment — that people could look past the disorder to the piano and guitar playing, engineer-oriented, Science Olympiad blue ribbon winner, awesome burger maker, mission trip attending, Fortnite playing, loves German class, golfer, ‘wants to be a summer camp counselor for little kids’ kind of guy that he would become.
This experience sparked my interest in researching the type of communication TS caregivers need to hear. My fellow caregivers do not need me to cite what they already know, which is that no matter how much we love our children, caring for an individual with TS can be exhausting, frustrating, painful, emotional, intense and uncertain. Frequently, to keep the social peace, we remain stoic as someone jokes that they must have TS because they swear or hints that perhaps tougher discipline might smooth behavior or responds with “really, but I don’t see the tics?”
So, should we just tell everyone we know that their child is so handsome or beautiful that no one will notice tics? Uh, no. Advice tends to be pretty specific and individualistic sometimes to be effective.
However my research suggests three themes that have started to materialize: verbal messages that deny diagnosis hurt – big time; these “denial” messages have emotional consequences that take a toll on the caregivers well-being; and messages that would help are “big picture” forms of encouragement or a reinforcement that the caregiver is exhausted and doing a great job as well as a strong advocate for their child.
Most of us do not like to see someone in pain, and consequently, we sometimes blurt out anything just to help. We don’t mean to hurt. It’s just in our human design. Although my research is progressing — and caregiver communication is nuanced and related to where an individual is on his or her caregiving journey — the following recommendations may help.
Don’t use words which ultimately deny the diagnosis
- Do not ask a caregiver if “they are sure” that TS is the correct diagnosis. Furthermore, do not ask if you can see the child yourself to double check or compare your experience with that child to the parent’s. Tics wax and wane. Someone outside the family may rarely see tic activity. Caregivers frequently get tic bursts at night after very long days.
- Unless asked, do not offer advice such as “remove gluten from his diet” or “put her on meds.” Each TS case is different and what works for one might not work for another. Trust me, the caregiver has already run down those options and many, many more. Plus, most of us can now digest medical journals faster than a Dothraki Horde can run through a Lannister/Tarly army.
- Do not compare cases of TS. TS does not have a uniform presentation but does have many comorbidities (OCD/ADHD being the most common). That person you knew from childhood who you think may have had TS or the depiction you saw in South Park, Deuce Bigalow and 500 Days of Summer is a) wrong and b) not the same as the child before you.
- Do not suggest that stronger parenting would help reduce tics. TS is a neurological condition that results in involuntary verbal and motor tics. In addition to being inaccurate, any more stress to the child is likely to result in more tics, not less.
- Do not assume that just because you do not see tic activity that everything is ok or that the child is “doing well.” In my son’s case, practicing his competing response therapy takes a great deal of mental effort. While you are noticing that he hasn’t had any tics, he has reversed the urge to tic 100-plus times. So yeah, lunch is forgotten sometimes.
- If you witness someone else saying these things in front of the caregiver, step in and repeat the following: “TS is a childhood onset neurological disorder that is inherited and causes involuntary motor and verbal tics. Individuals with TS frequently also have a co-occurring condition such as ADHD and OCD. It is a part visible and part invisible disorder. Our friend here is doing an awesome job with a situation that we probably do not understand.
Do use words of big picture encouragement
- “I admit that I do not fully understand TS. It sounds very complex, but I believe you. I can tell that you have a lot on your plate, and I admire how dedicated you are to advocating for your child.”
- “Wow, Bobby is such a happy child. He is lucky to have you in his life.”
- “I know that we can’t always see how TS impacts your child’s life and your life. I just want you to know that I am always happy to listen to you…no matter what.”
- Try to offer authentic appreciation for non-TS-related accomplishments or interests about the child such as “Hey, we really enjoyed having Sarah at our house yesterday. I hope she can visit again” instead of “Hey, we really enjoyed having Sarah at our house yesterday. You’d never know she has TS.”
- “I can see that you are busy running to medical appointments, visiting with teachers and counselors and a host of other important jobs. Is there something I can do to help?”
- Often, younger children have the best words of comfort. There are many stories about children, who – after hearing that their friend has TS – shrug and say “ok, but can he play?” Repeat these stories to the caregiver.
So, I hope this post provided some comfort to caregivers out there and ideas for those in the caregivers’ orbit on just the right words to help.
Happy Mother’s Day
p.s. To confirm . . . Andrew is, indeed, handsome.
Eryn Travis teaches public relations and public speaking courses at West Chester University. Before entering higher education, she worked on Capitol Hill and was the communications director for the American Association of Airport Executives. As a doctoral student, she is focused on strategic communication — specifically how non-profit organizations shape messages and integrate traditional and new media to connect audiences, combat misperceptions, and advocate for social change. Eryn lives with her husband, Bryan, and children Andrew and Caroline in West Chester, Pa. She is also one of those people who read all of the Game of Thrones books, rewatched most of the series and spends too much time on YouTube trying to figure out how it will all end.