“Argh, Aaargh, Mmmh.”
“Daddy, what is that?” I remember the sweet voice of my almost 4-year-old son in the back seat of the car last week. It was the first time he verbally responded to my vocal tics.
“Oh … nothing”, I said.
Nothing. Is Tourette syndrome nothing? Not to me it isn’t. The years of torment from schoolmates and perfect strangers who misunderstood my tics weren’t “nothing.” The years of having to make an announcement whenever my vocal tics appeared in public weren’t “nothing.”
“Please don’t mind that everyone. I have Tourette’s.”
I should be used to it by now. I was diagnosed at the age of 11 and I’m now, what … 42? The memories never fade or get easier to cope with. I’d better tell him.
“I will have to tell him eventually,” I whispered to my wife, who was driving seat. “Do I tell him now?”
“Be rational,” she said. “You’re going to explain Tourette’s to a 4-year-old little boy?”
She was right. At least it gives me some time to figure out how to explain it to him, what to say. How to break the news to my son that Tourette’s is hereditary and that if he doesn’t have it, his kids probably will? He’ll resent me.
“Fuck!” I shouted. Yet I couldn’t blame it on my Tourette syndrome this time. My particular case doesn’t give me the compulsion to shout obscenities. That was me being angry.
“Language,” she chided. “He’s still hears you.”
Explaining Tourette syndrome to a child
“When do I tell him?” I asked.
“He’ll be old enough to understand on a basic level in a couple of years,” she replied. “But don’t worry, he’ll be fine with it.”
“Do you think he’ll be embarrassed to have his friends meet me when he’s older?”
“You’re overthinking it, sweetheart, he’ll love you. Nothing will change.”
“How will I explain it to him though? I know I can’t say, “Daddy has a genetic neurological condition called Tourette’s syndrome that causes him to make involuntary muscle twitches and vocalizations called tics.”
“You’ve done it before.”
“When did I tell him?”
“Not our son, you goofball. Carly, my god-daughter. How did you explain it to her?”
That’s right. Four years ago my wife’s god-daughter noticed my tics at brunch in New York City. It was the first time I have ever had to explain Tourette’s to any child. She was 6 years old at the time and asked why I made “those noises.”
I remember asking her, “Can you stop yourself from sneezing?”
“No,” she responded.
“Well, sometimes I make sounds or twitches and I can’t stop it. Just like a sneeze.”
“Oh,” She said. “Does it hurt?”
“No. Not really,” I reassured her. “It’s nothing to worry about.”
“Are we all together now?” my wife asked her.
“Yes.”
“Are we all having a good time?”
“Yes.”
“Does Jason seem different now that you know this about him?”
“No.”
“Well. You’re right. I’m not different,” I remembered saying proudly.
“I’m still the same. You’re still my friend and I am yours.”
I remember feeling relieved. I’ll tell my son the same way I told her and he will still love me. The fact that I have Tourette syndrome won’t change our relationship a bit. And the possibility he might have it? Well, that won’t change a thing either. He loves me and he knows I love him. As it should be.
Resources for parents and children with Tourette Syndrome available via the Tourette Association of America.
(I was guided here by Kevin McKeever on Twitter, btw) I worked with a young man who had Tourettes when I was in my early 20s, he in his teens. Once I understood that his affliction wasn’t painful to him, I stopped noticing it, most days. Everybody loved him and accepted him, in our circles, for all of the things that he was: funny, kind, bright, talented, a good worker, and a good friend. Our customers mostly gave him their advice for how to cure hiccups. Later I bought the business and immediately hired him. His Tourettes didn’t define him because he didn’t let it define him. It was one of many things I learned from him. And I don’t think it will ever define you to your child.