Communicating with friends and teachers about son's Tourette's

The most recent posts I came across regarding Tourette Syndrome are from five years ago, and don't address the following question -- how and when to educate my 8 year old son's teacher/school community/friends and their parents about TS? 

Context: my son has a number of motor (blinking, mouth stretching, some should shrugging, arm extending), and aural tics (clearing his throat, clicks jaw) . Most are pretty subtle; in fact if you ask people they would say they haven't noticed anything, or might mention his blinking or his throat clearing but not realize those are tics. So, at this point, his tics are not impacting his public life. However, they are becoming more noticeable/frequent, and he has asked me about them, wanting to know if they'll ever go away, and very anxious that he will be made fun of. I've worked with a pediatric psychologist at Children's Hospital, who diagnosed him and has helped me talk with him about it. She has given me suggestions about how it might be addressed at school including 1:1 with teacher, via a workshop on diversity that included TS among other topics, etc. When I volunteer in his classroom I rarely see any of it, and when I've asked his teacher she said what most say (that he blinks a lot, so she figures it is a nervous habit). I let her know he has tics and that emotional and physical excitement including anxiety can trigger them but he can't help it. I gave her examples and said I'd be happy to talk to her more about it. I did not get into the diagnosis or try to educate her. Yet.

Other parents I'm close to I've told. But with parents of his other friends ... I have been hesitant to draw attention to him if it's not even noticeable (kind of like breaking his confidentiality?). On the other hand, if they are noticing something and just not saying anything/wondering I'd rather there be clarity. 

Have you had experiences communicating with your child, his/her friends or teachers about TS? The internet is full of advice regarding kids with very prominent tics, which feels like it requires a different approach than this. Suggestions? Thanks!

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You raise a lot of issues here, which may be better addressed on one of the many online TS groups. But in short, the TAA has some handouts that you can download for teachers/principals/other school workers with talking points. What's important is what your child is comfortable with. When my son was in 3rd and 4th grades, he wanted people to know he had Tourette Syndrome (mild tics, such as you describe) because  he had questions from classmates, and he was terrified that a sub would think he was clowning around. So I read "Tic Talk" out loud to the class (there's a few other options for elementary age kids). The third grade teacher led a bit of a discussion afterward, the 4th grade teacher moved it right along, and my son has felt comfortable enough now that everyone knows. Anyway, this question comes up a lot on the TS facebook forums, so check some out.

I would also encourage you to talk more specifically with your son about if the tics bother him a lot, or otherwise interfere with his daily life. Our pediatric neurologist (who, by the way, is the medical professional who should be diagnosing TS, not a psychologist) advised us early on to not consider medication until needed - meaning, quality of life was being affected. I can't tell from your post if your son is at that point or not, but our son was worried enough and building up anxiety about it, that he has taken medication for tics and/or anxiety since age 8 (now he's 11) and it seems to have helped him and kept the ticcing within what he feels is a nonobtrusive, non-anxiety-inducing level.

There is a NorCal TS group on Facebook that you might also want to check out, where people get specific about school districts and medical professionals. Good luck with everything! When my son was 8 it felt like TS was going to consume his life and now we barely think about it. It's just a medical condition that is manageable, like - not sure of a good parallel - high blood pressure?

I recall an article Oliver Sacks wrote about a surgeon with Tourette's. Somehow he was able to control the Tourette's during surgery, adjusting his neurological state to his situation. Perhaps your son is able to achieve the same kind of modulation.

It sounds as if so far people accept him for himself, rather than as "that kid with Tourette's." As you describe it, he's not being ostracized or punished, and his behavior is not disruptive.  So you don't need to explain him to people. This isn't something shameful to hide, but is it the most important thing for other people to know about him upfront? He's more than his tics. I know you wonder if making the diagnosis public will help, but labeling him won't save him from being teased. It's mostly useful if the teacher can't understand his behavior and decides to discipline him.

This may change over time. The tics could get worse, or better, or he could become more anxious about them. Adolescence is rough even without Tourette's. But to a certain extent he needs to figure out for himself what he wants to tell people, while knowing that you are ready and able to go to bat for him if need be. My guess is that it's better for you and he to learn strategies and language, so you'll both be able to handle whatever comes up. Investigate whether he needs alternate learning strategies and find ways to manage anxiety generally and increase his confidence. If the tics create an issue, you've got a diagnosis; if not, you've got a slightly atypical kid with a lot to offer the world.

I'm not a TS expert. My 2 cents.

This is something that we've dealt with a little. My son has ADHD and some subtle tics.  Until he was about 8-9, I didn't really discuss the ADHD or the tics with him, but always mentioned both things to teachers. I realize ADHD is different than tics, and the ADHD part has always needed to be addressed.  When I did talk with my son about it when he was 8-9, he seemed really relieved and interested to have a reasons for what he's experience.  Since then, I've talked with him about how much he wants other people to know (teachers, other parents, friends). He doesn't get a choice about teachers for the ADHD, but it's good for him to know that they know. For other adults he has some input (although I have told some of my close friends without asking him because I need support). For friends, it's always up to him what he shares.    I wonder if that would be helpful for your son. Especially if he's anxious about it and since anxiety could make tics worse, it could be a relief for him to know that others know about it and will understand what's going on (if they notice it). My son doesn't talk about it to all his friends, but has told several close friends and that was good for him.  Also, I found that it was great to set this stage for being open about it in elementary school because it's an easier and less self-conscious time than middle school.  For my son's issues, teachers always need to know and it's completely up to him how much he tells others. He talks about the ADHD more than the tics, but at times when the tics are more prominent, he is relieve when others know.   I know that 8 is still young, but you could ask him if he has a preference.  Sometimes I think that the more that these kinds of things are kept private, the more stigma they have.  Instead, if it's just talked about as a way that your brain/body/wiring is different than other people, it can make it seem less like a big deal. And having him have some control over the flow of information could be useful. 

Hi, I just wanted to chime in and say that when my child was in 2nd grade a fellow student had similar, subtle tics and had Tourette’s. I guess they were at a similar point where people were starting it notice more and ask more questions, so she put together a presentation for her classmates and explained what her tics are. The teacher said it was a really touching moment for the class and that the kids had a few questions, and were very sympathetic to the student. Then, things kind of went on like normal but the students had a better understanding. Good luck to you and your child, there are many ways to do it, go with what feels best to you and yours.

I just wanted to make sure you’re seeing a pediatric neurologist, not simply a psychologist. Tourette’s has a neurological basis & treatment is by a physician, not a psychologist. 

Thank you for your responses! Question -- I have heard conflicting recommendations to get care through a pediatric neurologist vs psychologist. Thoughts on this? When I look at the Tourette Association of America provider directory, as well as other online resources, I see both fields represented. Thanks again.

When my daughter was younger, we would always talk with her teacher about her tics at the parent teacher conference in the fall. I kept it very generic, "you may have noticed she's a little twitchy..." Most of her teachers hadn't noticed, a few did. Lots of elementary school kids have tics so it never felt like a big deal. It wasn't until she reached middle school and had some significant events at school that we told teachers and administration it was Tourette Syndrome. We also put a 504 plan into place so she had some backup. 

I've let her take the lead in telling friends. She's been pretty open about it which has helped kids at school to be accepting of her. If she's particularly twitchy, she'll just say she has Tourette's when someone asks what's wrong (in that snarky middle school kind of way.) Being so upfront seems to have diffused a lot of middle school unkindness. 

You also asked about neurologist vs psychologist. My understanding is that a neurologist will diagnose TS and not a psychologist. We saw the neurologist once for a diagnosis when we first noticed it and then one more time when things escalated.  Regular follow up has been with a psychologist which has been really helpful in helping her cope with all of this. Stress reduction has also been key as anxiety causes her tics to be much worse. 

(In response to OP's follow-up Q) Tourette should be diagnosed in a child by a pediatric neurologist. That doctor will be your main care provider for the Tourette piece of the puzzle. However, people with Tourette generally have one or more co-morbid diagnoses, which can include ADHD, learning differences, depression, anxiety, and OCD. Therefore often more than one professional is part of the care team. But it would be critical to have a neurologist lead, since they would be the professional up to speed on current treatments and options, such as clinical trials, non-medication therapies, etc.