When Tourette Syndrome Doesn’t Feel like a ‘Syndrome’ at All

Whenever I talk about my son having Tourette Syndrome, I feel weird about the word ‘syndrome’.

By definition, it’s not a derogatory word.

Here’s the definition:

Syndrome – a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms.

Fair enough.

So why the negative feelings when I use that word? I’ve reflected on this topic, off and on, for years. I’ve concluded that it feels ‘off’ to me because once we acclimated to life with Tourette, it didn’t feel like a syndrome or disorder at all.

To take it one step further, it can even feel like a blessing. If (and only if) you’re open to receiving this. If you’re constant to the proverbial ‘beating head against wall’ trying to fix it and making it go away, shushing him/her (which could be inadvertently shaming him), referring to motor tics and noises as ‘weird behavior’ to other people when talking about it, it’s fair to say that you may not be ready to accept TS as a blessing. And no guilt, please, for not being ready. Hear that part? No guilt, please.

This takes time. It’s a shift in thinking. A total shift. It’s like that moment when the hidden dolphin picture finally comes off the page…”I’ve got it!! I can see it! Oh wait, it went away.”

It takes practice to not only receive the blessing, but also to hold on to it and make it last.

One minute you feel it, the next it’s flown away, and you’re left with anxiety and fear again. But if you focus, really focus, on accepting your child’s syndrome as a blessing, you may be shocked at the subsequent fortunes that continue to happen; all because you shifted from syndrome to gift.

So what in the world am I talking about? How can I put such abstractions into actual examples to understand?

I can’t speak for your own experience and potential, and I’m fully aware of the varying degrees of severity with TS, but for me (us), our son’s TS began to manifest itself as a TB (Tourette Blessing) in 5 main ways:

    1. When we recognized the correlation between TS and a passion/talent for creative arts: music, writing, acting (recognizing this both in general through the media and also directly in our son’s life) He began writing songs and playing guitar when he was 10 years old. His first song was called “my stupid little hand disorder”, and in retrospect, we realized it was symbolic of what he was going through at the time of accepting his tics and sharing them with others. The lyrics to his song ended with “my stupid little hand disorder…it…feels…nice.”, and we learned that his tics felt normal and good to him…they were PART OF HIM. Over the years, I came to deeply believe that the blessing of TS doesn’t stand alone. It comes with other pieces and parts; gifts, if you will. For Andrew, these gifts were an amazing talent in music and theatre, and not so ironically, this has become his passion in life.
    2. When we finally drew the parallels between TS and extreme compassion for other humans. This is real, folks. I’m not saying compassion isn’t inherent in many of us or even in him, regardless of TS, but something happened with his core character as he grew up on the outside looking in. He was always having to take a step back and observe a situation before reacting, and he became quite good at this. Through this process, he learned at a very young age how to see the whole picture; how to look at someone’s behavior and think ‘there is more to this story’, so I’m going to give this person the benefit of the doubt and show them compassion. Not ironic that this fit in with our familial belief in Christianity and the unprecedented Law of Love. Hello!! Blessing
    3. When TS became the vehicle for him to learn how to protect his self-esteem and gain confidence. He wanted others to understand. He stood up for himself and not only educated himself, but began teaching his peers around him what it was like to have TS in ways they could relate. These are life skills he will always have
    4. When you realize that your child’s TS is pointing a finger at you to become more introspective about your parenting and the reasons behind your concerns. As a parent, it’s too easy to become consumed by all of this; especially when they’re little. The whole process (taking many years), taught me invaluable life lessons on parenting. How to let go. How to give your child more credit. How to bite your tongue. The list goes on forever, but every lesson is even more valuable to me as I have three more children growing up behind Andrew.
    5. When it becomes distinguishable that it was none other than his TS (and ADHD and other challenges) that solidified the core of your family; brought you together tighter and closer than you could have imagined because you’re facing the world and fighting for his success, independence, acceptance and happiness together as a family. And oh…by the way, it sure does feel like a blessing that we have each other!

It takes practice, and practice takes time. But when you see the dolphin transcend from the hidden picture, try to hold on to it a little longer each time.

Before you know it, you’ll have it! That peace and acceptance and love and gratitude is all yours.

Practice makes perfect.

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9 thoughts on “When Tourette Syndrome Doesn’t Feel like a ‘Syndrome’ at All

  1. As a mother of an 11 year old son with TS, thank you. Thank you for this beautiful post that so greatly articulates what I have never been able to fully explain to others. People look at me oddly when I try to explain that his TS is a blessing in its own way and his own right. This is beautiful and touched my heart deeply.

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  2. This post made my day. I have a 9yr old son who’s recently been diagnosed with TS. I have tears in my eyes. I can already see some of the blessings of TS. Thank you.

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  3. I have adult Tourette’s. The tics started as a child and never went away, although mostly held at bay with the antidepressants I was on. I didn’t even know I had Tourettes, although I’d been asked several times, until in my early 30s I switched to Wellbutrin, which has an activating effect. I’d always noticed my eyes would play up when I was tired, and I knew I twitched in my sleep, but none of it really bothered me until I could not ignore it anymore. Stress definitely worsens it; I had to change my schedule at a very stressful job I had because long days made it dangerous for me to drive home. I have a vision tic, jaw tic, head tic, and occipital muscle tic. I do occasionally have vocal tics, but always in private, usually when I’m reading and I find myself having to say a word over and over. I take clonazepam for it, which helps a lot, but I try not to take it if possible because of the depressive side effects. For the most part it’s manageable, but when upset or stressed it goes crazy. However, only people who have known me for a long time have noticed the tics; I’m able to keep them at bay when talking to people.

    The frustrating thing is that there is very little information out there about adult Tourette’s; the majority is about children. And of course there is that common misperception of Tourettes’ that it’s always the guy screaming obscenities down the street.

    But I’m okay. I’ve lived with it for so long that it doesn’t really even bother me much except when I have a migraine or am nauseous because my vision tic really exacerbates that. There’s a direct correlation between stress and how much my tics act up. Otherwise, now that I’m no longer at that stressful job, I’m fairly unaffected by it, although my jaw and occipital muscles are perpetually tight.

    I guess my point is that a TS diagnosis is not the end of the world; in fact, many children grow out of it. And for a lot of us who never did, I think a fair amount have figured out how to not show it when talking to people. I’m 36 now, and it hasn’t gotten worse; it’s pretty much stayed consistently the same.

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  4. Thanks for this – it seems as though I’m on a continuum of acceptance and understanding in regards to my 14 year old and his journey through TS. I appreciate your words here.

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  5. Is it bad that I don’t want to feel like this is a blessing? I want to fight it, to fix it, to make it go away. I want my son to sit through class and be able to focus as much as his ADHD will allow him to. Funny.. a year ago that was my main issue, his ADHD… but now, since August we have been dealing with often debilitating heavy bouts of tics (vocal and motor.) He can barely remain in class. His Saint of a counselor allows him to come to her office to do his work…not sure how she gets hers done… My life is appointments, picking up new prescriptions, CBIT, researching, starting acupuncture treatments….and waiting for my motherly superpowers to kick in and fix this…. But your story gives me hope, that it will be okay, that we will be okay with it, and that he will as well. So appreciate your story, thank you for sharing.

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  6. I have a 27 yr old son with tourette. My younger 22 yr old son introduced me to your blog. He can see how desperate I feel at times and I was touched by his act of support by sharing this with me. I have so many questions for you and do hope that you might consider speaking with me outside of this blog. Feel free to reach out if you have time

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  7. Thank you for writing this, for existing and for me finding it!

    Today is one of those days. When it’s all overwhelmingly out of control. Watching my 11.5 yr old son trying to do his homework while “short circuiting” and not being able to focus. It hurts knowing that I can’t fix/take away these days for him. Seeing him struggle and fall apart can bring me to tears some days.

    Thank you for reminding me about the other days, the days I can see the blessings and the laughter and I know he(we) are going to be alright.

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