Tourette's: To Tell or Not To Tell

A new blogger friend over at Tea & Tourette's just asked me a really good question. I thought I'd answer it here in case any other Tourette's family would find it useful.

The Question:
"Do you / your son / his teacher tell the kids in his class about his TS? My daughter's teacher has suggested we do but I am reluctant until we get advice about everything as we know nothing! We live in a small country town so there are support groups, etc. Any advice for us starting on our journey please?"

My Answer (and I'm never short winded):
This is a tough one. I can tell you what we've done so far and why. I certainly won't tell you that my approach is The Way. It's working for us right now. But you might find a different approach is better for your family.

One suggestion I have is to rent or buy the HBO documentary I Have Tourette's But Tourette's Doesn't Have Me. You can see more about it here. If you Google it, you'll find lots of places to purchase and probably watch a lot of it (I saw YouTube in my Google results but didn't go check it out). I would watch this first before deciding whether to share it with your daughter. I showed it to my son when he was about 7. I wasn't going to show him as I was concerned that some of the more severe cases might make him think that this must be how it will be for him. But he found it on our DVR and asked to view it. So I watched it with him. I think it helped him see that he's not alone and that Tourette's can look so different from kid to kid.

The reason I'm suggesting you watch it is, there is a kid in the documentary that has TS. But during the documentary, you'd never know it. He mentions that he's on meds. But he also chose to share Tourette's with his class. He presented it to his class and allowed them to ask questions. I thought it was a very bold move. I also imagine it fostered a lot of tolerance through information.

Now, what I decided to do with my son is different. Pokemon Boy's TS has been very mild in terms of physical tics. His tics are generally rare enough and small enough that no one really notices them. His anxiety and social issues are the bigger factor to me. But so far, he has blended into normal elementary school life (now in 4th grade) normally. There are some kids who label him "kind of weird" or "different". But he has friends and is pretty well liked and respected in his classes.

I inform all of his teachers and care givers (like summer camp care). I explain the severity (or lack there of) and what they might encounter. I actually don't even like doing this much. Because I feel it can label him and give his teachers expectations. I was tempted to just send him without informing anyone to see if they even notice. I've seen other kids his age that have similar social or emotional issues and they're not diagnosed with TS. But, to be fair to his school, I always inform them.

I have always asked that his teachers keep this information confidential - meaning from the other students. Pokemon Boy is a typical 9 yr old and hates being singled out in any way he finds embarrassing. Since his TS is so mild, I have kept to this course of action. In the back of my mind, I have always thought that, if his TS escalates enough where it begins to affect his socialization, I would encourage him to present his diagnosis to his class like the child in the documentary did.

Now, having said all of this, I don't know if I'm making the right decision. As he gets older, I will most likely present the idea to him of sharing his diagnosis with his friends and classmates. Some of his classmates just think of him as Pokemon Boy. He's silly, very smart and LOVES Pokemon. But I heard one little girl just today refer to him as "one of them." She had been talking about Pokemon Boy and another little boy that goes to their school. I don't know his diagnosis but I do know that he has some kind of emotional issues that affect his social signals and ability to control his actions. Children don't need to know an official diagnosis to know that something is different about someone. Pokemon Boy and this other little boy both have times when they blow their tops. They get upset over some things that don't bother most other kids. And they also let things slide that other kids might go ballistic over. Most kids will have tantrums now and then. But when kids with emotional disorders blow their stack, it's often a bit different. And other kids tune into that difference.

So there is a part of me that thinks, in a perfect world, if Pokemon Boy was able to work up a presentation that was informative and honest, his classmates would all understand him better and be more patient, more accepting. But I also know that there are a few kids that will use this information as a weapon. Any time they feel like pushing his buttons, that's what they'd go for.

Like I said, I don't know that I have taken the perfect stance for us. But it feels right for us at this moment. I take my cues mostly from my son. If he was excited about sharing, I'd be working with his teacher and counselor to have him present to his class and maybe other classes. It's a subject I will probably bring up with him now that I've thought about it and actually put my answer out here in writing. If he decides to take a different path, I will definitely write about it here.

Oktic, my email is in my full profile. If you ever want to ask me anything offline, email me. I'll share just about anything. If you want to ask here, I'll answer here, too. I hope this has helped.

I know you're in another part of the world but the TSA-USA.org website is very useful [I read through almost the whole site within the first 2 weeks of his diagnosis!]. Pokemon Boy enjoyed reading their online news letter written by kids with TS for kids with TS. It's called That Darn Tic. I think it helped him realize he wasn't alone and there were other normal kids out there just like him. Take a look and see if it's something you could share with your daughter.

I also got a lot of books from well meaning relatives. I tried to read each one at first but it overwhelmed and depressed me. Sometimes, the more I read, the more fear that grew in my head. What I did with Pokemon Boy was I just left the kid-level books around. I didn't force them on him. I left them with our other books and one day, I walked in to find him reading them. Sometimes he'd talk about it with me. Sometimes he wouldn't. I would ask about it if I saw him reading it. But I always took my cues from him - whether he wanted to talk about it or not.

Some books he has read:
Hi, I'm Adam
Adam and The Magic Marble
There are way more but those are two I know he read all the way through on his own.

Also, Pokemon Boy is a hugely generous and loving kid. If your daughter would find it useful to write him letters or emails, let me know and we can exchange info. I think he'd really like that. I imagine he'd answer almost any question she might have. And he'd be honest. If he didn't know, he'd say so.

Let me know how I can help.

- Tourette's Mom