In my last post, I talked about how my son, Stink, had a big speech in school about Tourette Syndrome. The speech went really well. With the dry-erase board in the picture above reading “Tics and Tourette,” the speech went basically like this:
A blond-haired boy, STINK, shuffles in front of the classroom in a too-small Scooby Doo shirt. A bleary eyed MAMA and protective younger sibling, PIP, stand to the side.
Teacher: I’d like all of you to turn your attention to Stink, who is going to share something very personal. It is very brave of him to be up here, so please, show your respect.
Quiet all around.
Teacher: So, Stink? Why don’t you begin?
Stink: Okaaaaay. Well, um… see… I have Tourette and tics. That means I tic. Yeah…. that’s about it. (Long pause.) So… Mama?
It might be the first time in this young boy’s life he is speechless. This does not forebode well for his Clown College culmination talk, where he graduates Magna Cum Loud Mouth.
Mama: You want me to talk now?
Stink: Yeah… give some more details.
Mama: OK, well, Stink has something called Tourette. He’s had it since he’s been 4. Basically it means he makes sounds from his mouth or body movements he can’t help. The more you ask him to stop, the more he does it.
Teacher: How does it make you feel when people ask you to stop?
Stink: They can ask all they want, because I don’t mind telling them I have tics, but I don’t like when they go on and on.
Teacher: Well, that’s nice of you, Stink. But what if they do go on and on? How does that make you feel?
Stink: Sad. But they can ask if they want.
The mom and teacher do a double take again, but that’s Stink – always worried how the other kid is going to feel. Mom is happy to have the floor, though, because it’s time to turn the train around again.
Mama: The thing is, Stink can’t help it. We all have things we can’t control or don’t like. Like me? I was tall as a kid. I hated it. And I hated people pointing it out to me. Does anyone else have something that makes them different?
10 hands shoot up in the air. Mom points to random ones.
Girl #1: I have to use a nebulizer to breathe.
Mom: That must be hard, but we still love you!
Boy #2: I have a twitch in my leg and it’s annoying!
Mom: We know all about twitches in our family, don’t we Stink?
Stink smiles, then he adds: “Mama gets nervous sometimes and goes to see a doctor to talk about it!”
So much for privacy.
The mother fields about 5 more descriptions from kids who share their innermost secrets from being a bit chubby, being born with a lazy eye, and my favorite furtive announcement: “I was born with a overbite. That’s why I wear braces – just so you know.” A few kids pat this boy’s back in solidarity.
The teacher finally calls the love session to a close.
Teacher: OK, so we all know Stink has TS. If he makes sounds, he can’t help it, so we don’t have to ask anymore.
Stink: Well, you can ask… (there he goes again) because I can stop… but it’s hard.
Teacher: So what should you do if you hear Stink tic?
Girl #1: Don’t ask!
Girl #2: Ask him to stop but don’t bug him again if he says he can’t help it!
Girl #3: Move away from him if it’s driving you crazy!
Teacher: That third option isn’t really necessary, do you all think? (The class shakes their heads “no”.) I mean, we don’t want our friend to feel bad. I’d say unless you are taking a test and Stink is super loud – which is not the case – you have no reason to change seats.
Stink: But you can ask me about my tics if you want to.
Teacher: Yeah, we got that, Stink. It’s time to walk away from the board.
Stink continues to draw happy cartoon characters with words “Tic Tic Tic!”
Teacher: NOOOOOOOW
Mother: Thanks for letting me speak today, Stink!
Stink: Bye Mommy. Bye Pip.
Everyone hugs. Stink continues to tic. Mommy doesn’t even cry. All in all? A happy ending.
Cheers from Australia! I love what you do on this blog and your own blog. Been reading it from afar for a while now. You have put up with a lot. Keep up the faith and keep up the writing! You are helping a lot of people, whether you realize it or not!
Its definetely a roller coaster of emotions to say the least. My anxiety and worries all stem from how others perceive him, treat him and how it will affect him now and in the future. Lately, he is more comfortable with his diagnosis and that puts me at ease somewhat. Still I worry about him, almost every minute, I admit insanely overbearing at times. Its a gradual learning experience for everyone in the family. As a mother its hard not to worry, wonder and want to make all things better for your child, especially one with TS. I have learned that children are resilient and if they see Mom get down, they can vibe that. Last thing you want is for your child to see Mom is feeling down and negative about the situation. Seems you are on the right track to getting to that “happy” place. Its a process beleive me. I still have “moments” of crying and the “why” my child etc. Then I remember that my son is otherwise healthy. Yes he will battle with this lifelong syndrome, BUT he is here, healthy and I am able to hug hold and love him. Thats what is important. I hope I was able to help keep you encouraged! Smile, its contagious! :)
@ Michelle – Thank you! You should totally do a post here at NJ. I’d take you at my site, too, when you’re done with the NJ one, or link the NJ post from my site.
@ Dianna – THank you. It’s been so hard lately. I am surprised after all my “this is going to be okay” that it still feels raw at times. But it’s better, and maybe that is the point. It gets easier, but there is no silver bullet. Hope u are well!
Good JOB Stink and Mom!!!
What a heartwarming story! I was a guidance counselor and had a few students with Tourette’s and they would be in my office constantly because the other kids didn’t get it. It wasn’t until we sat down with groups of students to talk to them about their situation and educate them that the stares and snickers calmed down. I am now the CEO of Fly on the Wall Productions, a publishing company that publishes character education and anti-bullying materials for schools. My goal is to spread the word to students that it is not ok to bully another person because they are different than you are! Students need to be educated about others’ differences instead of ignorant.
Michelle,
We would love to have you do a guest post on anti-bullying, and perhaps be quoted for a story we are working on pertaining to anti-bullying. Could you e-mail us at parents@njcts.org if you are interested? Thanks!