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A Lifetime of Tourette’s: Not-so-nice responses

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 here:

  • 3rd grade — A boy in my class asked if I had a nervous tic. He was very nice about it, saying, “I’m not making fun of you, we are just curious.” I had no response. What would I say? As far as I knew it was something to never be mentioned. So I just shrugged and said “no” and walked away.
  • 6th grade — While apple-picking with my family and some friends, I was having an unusually high tic-ing day. My parents’ friend looked at me and said, “Oh my God. Wow.”  I turned and ran.
  • 10th grade — I’m taking a math test and just tic-ing away. At the time, I was experiencing some serious complex tics — vocal and motor. So there I am, jabbering to myself, stuttering, calling out numbers and tapping my pencil on my paper, and my teacher looks up and says “Alison — Shut Up.”

Today, I am a stay-at-home mom, and I own a small store. The tics do wax and wane, as you have likely seen in your kids. At their worst, every day is an exhausting struggle — tic, pour the juice, tic, put the cap on, tic, put it in the fridge, tic, tic, tic. The tics just add more and more movement to my everyday routine and are both mentally and physically exhausting.

Just recently, my 2-year-old has started mimicking some of my tics. This is both entertaining and heartbreaking. I hope that he will not develop TS and have to live with an extra challenge in his life. But I know if and when either boy exhibits symptoms, I will try my best to be open and honest with them and to get them any help I can.

Whether it is medicating or special accommodations in school, I want more than anything for them to avoid the stresses that I endured.  If I could change anything, it would be to communicate more and hide less. I look forward to hearing others experiences and sharing anything that might be useful.

6 Comments

  1. Thanks for the reply! Simply acknowledging that what I was experiencing was an actual disorder with a name and with treatments would have been so helpful. When I did get any response it was something like “relax” or “take a breath” which was so annoying to me since I felt like I had no control at all over my tics and I knew it would take so much more than just “a breath” to feel normal. Their acknowledgement would have allowed me to acknowledge it and accept it, if that makes sense. Also talking to my school and my teachers would have been really helpful. I was an honor student and attended a top university, so I guess my parents and teachers felt I didn’t need special consideration, but at times when my tics were very bad sitting in a silent classroom, to take a test for example, or watch a movie, was very stressful. I had to concentrate more on controlling my tics than on the class. Taking my tests in a separate room alone would have been extremely beneficial. I know that as a parent it is hard to talk to your kids sometimes especially about things that are embarrasing or hard to understand. In this case I would recommend finding a therapist or pediatrician who is knowledgeable about TS to talk to your child. I would have really benefitted from this as well. As you likely have noticed, kids don’t seem to tic much in the doctor’s office because they can control it for short periods of time. So not only is it something a child isn’t likely to bring up in the first place, but it doesn’t easily come up in conversation because the doctor or whoever is there doesn’t necessarily notice it. When I first saw a neurologist as an adult I thought they wouldn’t believe I had TS because I wasn’t ticcing in front of them. But obviously this is something they deal with all the time and are used to.
    I hope that helps! Feel free to ask me any questions you can think of. I love this opportunity to “talk” to others about my experience and theirs.

    • that helped immensely already since i find myself saying “relax” and “take deep breaths” more than i care to admit. Now at least i know why that’s not working.

      • well I guess thats a common response then! It is a resonable thing to say, but for the person having the tics it is frustrating because it makes it sound so simple. The thing with tics is that they are going to come out eventually even if you can hold them in for awhile. So if you are in a place where his tics are disruptive or getting really out of hand, he could TRY to relax, but if that’s not helping its best for him to just leave the room for a bit.

        • Hi Alison,

          Your story was very helpful and I thank you for sharing it. Hope you don’t mind if I ask you a personal question. Did you have a mood disorder with the TS or anything else like OCD? I find that my 12yr. old son is SO moody and since he is my third son, I know the difference. He cries, he is angry ALOT, and sometimes just hates his life. I’m looking for some advice on what to say. He takes meds, sees therapists too. I’m lost…and SAD myself.

          • I have since been diagnosed with depression and anxiety. I definitely had depression issues as a young person but since I was never diagnosed with anything it went untreated. I cried a LOT. I think my mother chalked it up to teen moodiness but it was more than that. The tics exacerbate the depression which exacerbates the tics so its a terrible cycle. Treating the tics did help the depression a bit but not we treat the depression which makes me more able to deal with the tics. Hope that makes sense. Obviously I am not a doctor but it seems to me if he is still having issues with the moodiness and anger he might need different meds. There is a balance you have to find. You don’t want your kid overmedicated but they have to be able to function and be reasonably happy as well. Is your therapist very familiar with Tourette’s? It is important to have doctors that really know about the disorder since it is so complicated. I wish you luck!

  2. Alison, first of all, thank you SO much for having the courage to give us your perspective. You are just an amazing asset here. I was wondering what do you wish your parents had done to help you get through childhood and adolescence, what would have made it easier for you? Thanks!

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