Well hi. I have no idea how to start this post. I am thrilled to be sharing my experiences on this blog and hope that my perspective as a person having lived with TS since childhood and as a parent will help other families.
I have two boys, ages 2 and 4. It is too soon to tell if either of them will have tics, but statistically boys are more likely to have Tourette’s, so I figure with twp boys we have a pretty good chance.
I was formally diagnosed with TS eight years ago at age 23. While the majority of TS patients see their tics all but disappear in adulthood, mine have stuck around. My motor tics over the years have run the gamut from practically nonexistent (just an eyebrow raise) to severe (violent head nodding and arm waving).
I have experienced bouts of coprolalia (uttering objectionable words or phrases), echolalia (repeating others’ words or phrases) and palilalia (repeating one’s own words). When I was 8, I saw some kids with TS on an episode of Oprah and immediately self-diagnosed. (You might wonder what an 8-year-old was doing watching Oprah. To this day I have no idea, but clearly it was meant to be.)
I have no idea if my parents knew about TS (probably), if they suspected I had it (how could they not?), or if they spoke to my pediatrician about it (doubtful). I only know they never discussed it with me. As a result, I never discussed it with anyone else until I reached adulthood and could no longer reasonably function because of my tics.
Because I grew up thinking it was taboo, I still have trouble talking about it. I hope to change that starting today. Since my diagnosis and getting a handle on my symptoms and co-morbid depression and anxiety, I have felt a lot of resentment toward my parents and even more so toward my childhood teachers.
I wish that one of them had spoken up, approached me or my parents, and at least opened up the lines of communication. That is one of the main reasons I decided to get involved in this blog. I am so glad there are parents out there looking for information to help their kids.
When I did once accuse my mother of “never doing anything about it”, she told me I was a happy kid, so involved and successful in school; she didn’t think I really missed out on anything. At first I thought this was ridiculous. Of course I missed out. Maybe I could have been popular instead of nerdy. Maybe I would have been an athlete instead of the manager. Maybe I could have even been homecoming queen!
As if somehow treating my TS would have made me outgoing, coordinated and shiny-haired rather than shy, nearsighted and freakishly tall. Now I realize my life experiences have shaped who I’ve become and have given me strength, compassion and perspective.
Regardless of the positive or negative impact of living for 18 years with an undiagnosed neurological disorder, I did endure some things I would not wish upon anyone. I’ll share a few in my next post.
Hi Alison. I felt like I was reading about myself while reading your post. I was diagnosed at 23. When I first self-diagnosed (in college) I was so excited to learn that my tics weren’t just me being a freak. I never really heard about tourettes syndrome as a kid (except what you see in the movies of people cursing) and I never knew the word “tic.” I did watch Oprah as a kid but I guess i didn’t see that episode. Anyway, I tried to tell my parents about it when i was in college, and thought how could they not see how this all makes sense once I tell them about it. I even made a list of all the tics I have ever had up til then and showed them that it matched the lists from the internet. They just insisted that I didn’t have TS though. It made me so frustrated because I really thought they would be more supportive. Since then it pretty much has been taboo to bring it up.
And oh my gosh, what you said about being resentful about teachers not bringing it up. I think about that all the time lately. I keep thinking why didn’t at least my elementary school teachers try to do anything about it? I spent my childhood thinking I was a freak. Maybe I would have had better self-esteem growing up if I at least knew there was something behind my “habits.”
Well I’m just glad that there are other people out there who feel the same way and ponder about their childhood with tics.
Robin, thanks for your post! I’ve never really met another adult with TS let alone one who was diagnosed so late in life. Glad I’m not the only one! I keep thinking there is more I should be doing as an adult who’s been through this…do you feel that way?
Thanks for starting this blog! I am the mother of two boys – 6 and 1. The 6 year old was recently diagnosed with TS – and has been exhibiting symptoms since he was about 3. We cannot pinpoint anyone on either side of the family who has this. It is an entirely different prospective for you – having it yourself. This must greatly affect how you would treat your children if they developed it (hopefully they don’t). We spent months trying different discipline techniques for our son’s bizarre behavior. Of course, none of it worked and it only made him more anxious about it. It wasn’t until Kindergarten that we were forced to address it. My husband and I were very leery of ‘owning’ the diagnosis and putting a ‘label’ on our son. After reading your experience, it has reassured me that we have made the right decision. Our main goal is trying to prevent/lessen any mental damage that comes with TS. If we can get his teachers on board to ignore as much as possible, it decreases his stress and therefore decreases his tics. Thanks for sharing your experience!
As a mother, I understand your feelings about not wanting to label your son, but I do think you did the right thing. Especially at such a young age, it is better for him to have the support he needs and deserves.My son who is 4 has a severe speech delay. We had him tested and subsequently labeled “pre-schooler with a disability” (the only label assigned to preschoolers who need IEPs in NJ) so that he could get speech therapy through the public school. I struggled with the thought of him having a label, especially one that sounds so severe and places him in the “special ed” quota for the school. Luckily I had my own experiences to look back on and I know that he is better off this way. There is nothing wrong with a little extra help for any child. And the way I see it EVERY child has “special needs”! We all learn and grow in our own way and at our own pace. In the future if your son is able to control his tics better or his tics decrease you can always re-evaluate and change or discontinue any IEP.
That’s interesting that you saw an episode of Oprah about TS. I didn’t realize that she had done a show about it that long ago. When I saw the one about 7 years ago, I was already pretty sure that my son had TS, the fact that he happened to walk into the room and see it, was, as you say, meant to be.
I’m so glad that I was able to diagnose him as early as I did, otherwise school would be much more difficult. I’m afraid that, had I had TS, my parents would have never tried to get me help. I think it would have been like in your family….never talked about. I can certainly understand your resentment toward your parents and teachers. It’s heartbreaking how insensitive and out-right cruel some people can be.
My son doesn’t talk about it much, I’m the only one he discusses it with. I think he’s embarrassed. He has always been easily embarrassed and gets very angry about it. I’ve tried to get him to go to our local TS support group meetings with me, or to other TS related functions, but he wants nothing to do with it. He’ll be 13 soon, do you think I should push him to talk about it? He doesn’t have any close friends. He feels like he doesn’t fit in anywhere.
I think the more you and others around him are open about it the more comfortable he’ll become. 13 is a tough age in anyone’s life, so I wouldn’t be expecting too much out of him, but he has to know that its okay to talk about it. When other people would mention it to me, I always wanted to answer them honestly but I just didn’t know how. I also felt like my family wouldn’t support me and wouldn’t like me talking about it. In hindsight they probably would have been fine if I had initiated it but thats a lot to ask of a kid. If he gets used to hearing you and other adults talk about it hopefully he will come up with some useful things to say to others.