Starting a new school year is always a mix of excitement and nerves for any family. For parents of children with Tourette Syndrome (TS), it can also mean extra planning and advocacy to ensure their kids are understood and supported in the classroom.
Tourette Syndrome is a neurological condition that causes involuntary movements or sounds called tics. We spoke with two mothers, Rosie and Kelly, about their back-to-school experiences with their children who have TS. Through their voices, we explore the importance of routines, school support, peer understanding, and advocacy in making the school year successful for their families.
Routines at Home: Starting the Day Off Right
For Rosie and Kelly, keeping morning routines consistent and low-stress is a top priority.
Rosie, whose son is 10 years old, describes their mornings as “pretty typical”. Breakfast, teeth brushing, getting dressed, and packing up for the day, but with one important difference. Because her son also has ADHD (a condition that often co-occurs with TS in kids), “he needs frequent prompts and reminders to stay on track” during the morning rush. His tics tend to be mild at the start of the day and “aren’t very noticeable in the mornings; they tend to increase as the day goes on and he gets tired,” Rosie shared.
In other words, a calm, structured morning can help him head to school in a good frame of mind.
Kelly, who has a 14-year-old son entering high school, notes that mornings can vary depending on what the previous day was like and what the upcoming day holds. “Mornings can look different depending on the amount of sleep and how the school day went the day before,” she explained. If her son is anxious about certain classes or teachers (some “are not as understanding and therefore make him anxious before even stepping into the school day”), that anxiety can slow down their routine.
Kelly’s son has multiple co-occurring conditions, including a past traumatic brain injury, ADHD, anxiety, and OCD, which means he can “only handle one or two tasks at a time before he becomes either distracted or resistant to going to school”. Recognizing this, Kelly adjusts their morning pace, giving frequent gentle reminders and focusing on one step at a time.
Both moms have discovered practical strategies to make mornings smoother. Rosie relies on simple tools and prep the night before: “A visual checklist helps him stay on track,” she noted, and laying out clothes and making lunch the evening prior cuts down on chaos. “On tougher mornings, a few minutes of rest or a quick activity together can reset the mood (if there’s time),” Rosie shared, emphasizing flexibility when her son is overwhelmed.
“We allow natural consequences for those types of things (should there be any) and it lessens the overwhelm for him. We found options have been very useful as well. Instead of what would you like for lunch, we ask if he would like option a or option b. If he feels overwhelmed by choices or tasks his tics become worse and he becomes more emotional. Sometimes we will say out-loud reminders for all three so he hears the reminder but doesn’t feel like he was being targeted. We also try to manage hunger as soon as possible.” – Kelly
Kelly’s family also uses visual reminders, “a chalkboard that sets out the daily/weekly commitments,” and they prepare the backpack and clothes ahead of time. She tries to allow a “gradual wake-up” without rushing, and avoids battles over small issues like choosing appropriate winter gloves or footwear. “We allow natural consequences for those types of things… it lessens the overwhelm for him,” Kelly explained. Giving choices has also been key in Kelly’s house. Instead of asking an open-ended question like what her son wants for lunch, “we ask if he would like option A or option B. If he feels overwhelmed by choices or tasks, his tics become worse and he becomes more emotional,” she said. Offering limited options helps her son feel in control without getting overloaded.
Despite their best morning routines, both parents acknowledge that certain times of day can be extra challenging. Rosie finds that her son’s tics usually “are strongest at night, when he’s tired,” sometimes even making it hard for him to fall asleep. Excitement or anxiety can also cause tics to flare up momentarily. Kelly has a different daily hurdle: “After school is our most challenging time,” she said plainly. Her son often comes home mentally and emotionally exhausted from holding it together through a difficult day. “He experiences tic explosions and emotional breakdowns after school and can take up to several hours to regain some sense of control,” Kelly shared. Knowing this pattern, her family avoids scheduling any activities or responsibilities immediately after school, giving her son time to decompress in a safe space at home. By anticipating these tough moments – whether it’s the after-school crash or bedtime tic surge – Rosie and Kelly build breathing room into their routines, helping their kids recover and prepare for the next day.
Working with the School: Accommodations and Communication
Setting up the right supports at school is just as important as the home routine.
Both Rosie’s and Kelly’s children have an Individualized Education Plan (IEP) in place to outline accommodations for their TS and any co-occurring conditions. “Having an IEP in place and updated is critical,” Rosie emphasized. These plans ensure their kids can access needed breaks, tools, and adjustments in class.
For instance, Rosie’s son’s IEP allows “breaks from time to time to visit the special education classroom” (a relief when his tics or anxiety spike), extra time on tests or fewer homework questions, alternative ways to complete work (like using a Chromebook to type instead of writing by hand), permission to leave class with a hall pass without drawing attention, and even flexibility in art class if certain materials trigger his tics. “Some of his accommodations for school [include] more time for tests, option to leave class, tics are supposed to be ignored, seating options,” Rosie recounted, highlighting how a range of small adjustments can make a big difference.
However, having a plan on paper is only part of the equation; it has to be implemented.
Rosie noted that one teacher “hasn’t always granted” her son’s scheduled breaks, citing other students with greater needs and not enough resources. This kind of challenge is frustrating and shows why parent advocacy is ongoing.
Both mothers keep in close touch with the school to ensure the IEP and accommodations are followed and updated as needed. Rosie makes a point of “regular check-ins with the teacher, special education staff and even the principal every couple of months” to voice concerns and adjust supports over the year. “I also keep an open email line with his teacher so any small issues don’t build into big ones,” she added.
Kelly likewise believes in proactive communication: “Frequent and consistent communication” is her motto. She lets the school know as soon as she senses a “wave” of tic intensification or a stressful period coming up. “Heads up emails are sent around more difficult seasons, times, [or] specific stressors, so there is an awareness that it might get bumpy,” Kelly explained.
This way, teachers aren’t caught off guard if her son’s symptoms escalate; they already know what might be going on and can respond with patience rather than punishment.
“At the start of the school year, I give his new teacher a short overview of Tourette Syndrome, how it shows up for him, and what supports help. I try to keep it practical and reassuring so they feel confident supporting him. We also encourage my son to share his diagnosis with the class, provided he feels safe and comfortable doing so. This helps classmates understand what tics are and why they happen, and that it’s not something he can control. It sets the tone early and helps normalize it, so his tics just become another part of who he is.” -Rosie
Despite the challenges, Rosie and Kelly have seen the value of working collaboratively with educators who are willing to learn. At the start of each school year, both moms take steps to introduce their child’s needs to the people who will be working with him. Rosie likes to give her son’s new teacher a concise “cheat sheet” about TS and how it presents for her child. “At the start of the school year, I give his new teacher a short overview of Tourette Syndrome, how it shows up for him, and what supports help,” she said.
Keeping this overview “practical and reassuring” is key; Rosie wants the teacher to feel confident, not scared or overwhelmed, about having a student with TS. Kelly takes a broader approach now that her son is older and has multiple teachers: “I offer start-up meetings for all the staff he will interact with,” she noted.
She also provides written updates and resources: “I offer written updates on his tics and how they are showing up at different times. I offer resources via articles, videos, and handouts,” Kelly explained.
By sharing knowledge, she helps the whole school team understand what to expect and how to accommodate her son. Most importantly, Kelly makes sure educators see her child as more than just a diagnosis. “I present him as a whole person… not just his TS,” she said, because building personal connections can prevent her son from being defined solely by his tics.
Of course, there’s always room for schools to do better. When asked what they would change if they could add one more support in the classroom, Rosie didn’t hesitate: she wishes for greater awareness and training among all school staff.
It’s not just about the homeroom teacher knowing about TS; “recess supervisors, supply teachers, and other staff” should also understand Tourette’s and how to respond appropriately.
“It would be great for the school to offer education to staff on the subject, and provide resources to parents to educate themselves,” Rosie said, even noting that she had offered to provide handouts for other students’ families. Bureaucratic hurdles (like district approvals for materials) have slowed those efforts, but Rosie believes “schools shouldn’t settle for a one-size-fits-all approach” and that school boards need to “step up” to support students with different needs. Kelly’s wish for change is more interpersonal: she hopes teachers will communicate directly with her son instead of only with her. Often, if a teacher doesn’t understand something about her son’s behaviour or needs, “they remove him from the classroom and then call me to discuss,” Kelly said. While she appreciates being in the loop, she knows her son is capable of speaking for himself when given the chance. “He is quite articulate, but his message is sometimes lost in his frustration,” she pointed out. Kelly would love to see educators try talking with her son to solve issues in the moment, rather than talking about him in his absence. It’s a reminder that empowering students to self-advocate is part of making them feel supported at school.
As Rosie and Kelly remind us, the start of the school year is about much more than supplies and schedules; it’s about creating space for children with Tourette Syndrome to feel understood, supported, and ready to thrive. Their stories show both the everyday realities and the small victories that matter most.
Want to hear more?
In Part 2, Rosie and Kelly dive deeper into how schools can build understanding among peers, celebrate resilience, and work alongside parents to foster acceptance.
