After exploring home routines, school supports, and the importance of peer understanding in earlier parts of this series, we now turn to one of the most vital themes: advocacy.
For parents of children with Tourette Syndrome, speaking up is not optional; it’s essential. Advocacy shapes how teachers respond, how schools adapt, and ultimately, how children feel about themselves in the classroom.
In Part 3, Rosie and Kelly share the lessons they’ve learned about being their children’s champions, the strategies that make advocacy effective, and the advice they wish every parent and educator could carry into the school year.
Advocacy and Advice for Parents and Educators
Both Rosie and Kelly have learned the importance of speaking up for their children. They offered some heartfelt advice for other parents who may be sending a child with Tourette Syndrome to school for the first time.
First and foremost: be your child’s champion. “You are your child’s best advocate,” Rosie emphasized. “Don’t be afraid to educate, over-communicate, and ask for what your child needs.” In her experience, most teachers do want to help, “the frustrating thing is that they just may not know how”.
By proactively sharing information and requests, parents can equip teachers with the understanding they need to support the student. Rosie’s approach is to assume goodwill and offer guidance, rather than waiting for problems to arise.
Kelly’s advice to fellow parents comes from lessons she learned the hard way. Never apologize for your child’s tics or differences. “Don’t apologize for things which are out of your child’s control,” she urged. A loud tic or a sudden movement might disrupt class for a moment, but that’s not your child being “bad”; it’s just the nature of TS.
Kelly also cautions against falling into the trap of feeling like you or your child is a burden on the school.
In the past, she was overly apologetic and timid when advocating, and it backfired. “I have approached staff this way at first and found that all it did was make it easier for them to dismiss him and me,” she admitted. If you act like a burden, some people will unfortunately treat you like one.
Now, she has adopted a “firm and friendly” stance. That means being clear and unwavering about her son’s rights and needs, while also remaining collaborative and polite. You can be the squeaky wheel and a team player at the same time. “I am absolutely here to help give staff a better understanding and support them in any way that is feasible, but I am very clear on his rights,” Kelly explained.
Her message to other parents: don’t shy away from advocating, and don’t let initial pushback deter you. Your child deserves the support, and working constructively with the school (with a smile and some persistence) can eventually make a difference.
Finally, Rosie and Kelly shared a few key points they wish all educators knew about Tourette Syndrome and students like theirs:
- Tics are not voluntary. As Rosie succinctly puts it, asking a student with TS to “stop” their tic is like asking someone not to sneeze; it’s just not possible. Teachers shouldn’t scold or punish a child for ticcing, nor should they draw unnecessary attention to it. The best approach is to ignore harmless tics, address only truly disruptive behaviours as needed, and understand the child isn’t doing it on purpose or for attention.
- Support works better than correction. Instead of trying to minimize or “fix” the tics, educators can focus on creating a supportive environment. A student who feels accepted is more likely to thrive. “If he truly believes that you want to support him, he [is] much more likely to explore options” to cope with challenges in class, Kelly noted. In contrast, if a child senses that an adult’s help is given grudgingly or solely to make the tics go away, “then he’ll become resistant,” and trust is lost.
- Build trust from day one. Kelly emphasized the importance of “establishing a connection from the outset of the year” with a student who has TS. A simple conversation, a private check-in, or showing interest in the student’s strengths can set a positive tone. When the child knows their teacher sees them (beyond the tics) and genuinely wants them in the class, it makes any difficulties easier to navigate together. A little understanding early on can prevent bigger problems later.
Above all, Rosie and Kelly’s stories highlight the power of empathy, communication, and teamwork.
Parents, educators, and students each play a role in shaping a school experience where a child with Tourette Syndrome can thrive. As you prepare for this back-to-school season, remember that you’re not alone; there’s a community of families and professionals working through similar ups and downs.
“You are your child’s best advocate,” as Rosie said, but you also have partners in educators who care and other parents who have walked this path. With patience and persistence, the routine of school can become not just manageable but rewarding for children with TS. The hope that Kelly’s son carries with him each day, the hope that “today will be better,” is a hope we can all nurture.
By educating classmates, by collaborating on accommodations, by celebrating the victories (big and small), we set the stage for a school year where differences are respected and every child gets a chance to shine.
Here’s to a new year of growth, understanding, and success for students with Tourette Syndrome and the families who cheer them on every step of the way.
