My son has been diagnosed with Tourette syndrome, a neurological condition marked by involuntary vocal and motor tics. While it is often identified in childhood, it’s a common misconception that it always involves outbursts of inappropriate language (known as coprolalia). Many children with Tourette syndrome also present symptoms of obsessive-compulsive disorder (OCD), attention-deficit hyperactivity disorder (ADHD), or face challenges with impulse control.
He is an intelligent, kind-hearted, humorous, and charming 8-year-old who also happens to grimace, jerk his head, scrunch his shoulders, clear his throat, and make silly noises frequently. His impulse-control issues mean that he can sometimes act destructively or inappropriately. Despite this, my son’s situation is manageable, though we still encounter disapproving looks and curious stares from strangers during outings.
I hope that by sharing our experience, I can foster a better understanding of Tourette syndrome and encourage others to reach out to those who may be facing similar challenges. Perhaps another parent will read this and find solace in knowing they are not alone or might discover that their child’s twitching may have a reason.
The Journey Begins
Our journey started with what was labeled a “100-day cough,” which persisted for a year. At 2 years old, doctors diagnosed it as “post-nasal drip.” After enduring chronic coughing and throat-clearing for about a year and a half, we worried he might have asthma. Testing revealed “bronchial spasms.”
When he turned 3, my son expressed a desire to start school, so we enrolled him in junior kindergarten. Shortly after, teachers approached us with concerns, suggesting he might have a learning disability due to “disruptive noises” in class and difficulties focusing. I naively explained his bronchial spasms and promised to monitor him closely at home.
Before long, he started blinking excessively, which we attributed to dry eyes after seeing an optometrist. We tried eye drops, hoping it would alleviate the problem, but the blinking persisted.
As kindergarten approached, his disruptive behavior escalated again. His teacher decided to separate him from the rest of the class, facing his desk toward the wall, believing it would minimize distractions. Regrettably, I accepted her decision without questioning it, trusting her judgment as I was not present to witness his behavior firsthand.
Slowly, my vibrant, joyful child became withdrawn. He began to dread school, often crying and watching me leave from the classroom window, which broke my heart.
This past year marked his second-grade experience. At our initial parent-teacher meeting, I heard the words I both anticipated and feared: “Your son is very sweet and bright, but he struggles to focus and his constant noises are disruptive.” I mentioned we were “working on it” at home, but felt lost on how to proceed, hoping this teacher wouldn’t isolate him like the previous one.
The Realization
I don’t recall the exact conversation that led to my epiphany, but someone mentioned meeting an individual with Tourette syndrome who didn’t exhibit the swearing type. My misunderstanding of the disorder left me perplexed, as I thought they were synonymous. Intrigued, I researched online and was overwhelmed with emotion. It matched my son’s experiences perfectly. Guilt washed over me as I realized I had overlooked the signs for over six years.
Receiving the Diagnosis
Tourette syndrome has no definitive test; diagnosis relies on discussions regarding symptoms and the clinician’s observations. Our family physician confirmed my suspicions and referred us to a pediatric specialist focused on Tourette syndrome for an accurate diagnosis. After months of waiting, we received the confirmation about four months ago.
Looking Ahead
Since the diagnosis, I’ve immersed myself in research. While I’m not an expert, I now feel more equipped to understand my son’s condition. Given the nature of Tourette syndrome, his tics will evolve over time. I must remain prepared for any changes that may arise. Tomorrow, he could wake up with new tics, or even start swearing—there’s no way to predict what lies ahead.
I am relieved to share that my son is now happier than ever. With a clear explanation for his tics, he no longer needs to endure questions from teachers or parents about his noises. He can embrace who he is.
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