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When Kindness Overcame Ignorance About Tourette Syndrome at the Movie Theater

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My son Jacob has Tourette syndrome, a neurological disorder that causes him to make involuntary sounds and movements. Fortunately, I don’t believe Jacob has had to deal with many uncomfortable situations as a result of his Tourette’s, but there have been a few.

Once Jacob and I went to see a movie at a local theater. I knew that taking him might be a problem, but I didn’t want anything to prevent him from doing things other kids could do. I was not about to punish Jacob for ticcing, and in my opinion, that’s exactly what it would have been — a punishment.

When we got there, no one was in the theater, and I prayed we would be the only ones. I knew if there were others, the staring could start and hurtful things might be said. Fortunately, with the darkened theater, any stares were unnoticeable, but the remarks were loud and clear.

I am not usually very vocal when people stare because I don’t want to make Jacob uncomfortable. That night was different.

Someone shouted out basically telling us to leave the theater, and I stood up and said a few choice words as I told them Jacob had Tourette’s. Even after that, the comments continued.

My heart raced, and I was ready to pounce in Jacob’s defense once again. Then Jacob reached over to wipe away my tears as he put his arm around me and said, “Don’t cry Mom. It’s OK. You believe that, don’t you?” This kid’s amazing.

As people exited the theater, I noticed some coming our way. I was prepared to be attacked. Instead, a woman along with her husband and son came up to me and hugged me while apologizing for the rudeness of others.

I cried and told them I just wanted people to understand that he had every right to be there, too. Then another infuriated couple expressed their concern that Jacob was subjected to such insensitivity. All the while Jacob stood there with a huge smile on his face, thanking these wonderful strangers who went out of their way to encourage him to be proud of who he is.

These same people followed us to the front and confronted the assistant manager, telling him how rude even his employees were. They were fighting for a complete stranger; they were fighting for my son. The apologetic manager tried to refund our money but I refused, explaining that we only wanted people to understand.

As we turned to leave, another stranger came back inside the theater and walked up to Jacob. She fought back tears as she apologized to Jacob for having been one of the rude people. She said she was ashamed of herself and that she had learned a huge lesson from this experience.

These are the stories you rarely hear, but these are the stories that can change people’s lives. All of those people changed me, and I believe they changed Jacob.

Here’s what I hope for them: I hope that after this experience they went home and shared their story with others, and I hope that knowing Jacob — the kid who thanked them for their kindness, the kid who didn’t get upset, the kid with Tourette’s — changed their lives forever. He sure has changed mine.

A version of this post originally appeared on Savannahnow.com.

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Thinkstock image by Jacob Ammentorp Lund

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To the Boy Who Made Fun of My Tourette Syndrome

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I have Tourette Syndrome. You might not notice it right away when you meet me, but soon enough you’ll notice my eye tics. No, I’m not winking at you. No, I’m not rolling my eyes at you. And no, there is nothing wrong with me. I just have Tourette Syndrome, it’s as simple as that.

Growing up, I was used to kids making fun of me. Calling me “blinky” or “twitchy.” Pointing at me and mimicking what I do. Or someone occasionally asking why was I winking at them. I was used to it and I had gotten to the point where I didn’t let it bother me. I didn’t let any of the ignorant comments like “But if you Have Tourette’s, why aren’t you swearing?” bother me anymore.

It’s OK they didn’t understand swearing is actually one of the rarest forms of Tourette Syndrome. It’s OK they didn’t understand that no, I actually can’t control my tics, even when they tell me I should just stop. And it’s OK those kids growing up made fun of me. You really didn’t hurt me. If anything, you just hurt your own character.

It wasn’t until the summer before my sophomore year of college that someone actually genuinely hurt me — for the first and last time — about my Tourette Syndrome.

It was a hot July night. I was at a friend’s house after being at the beach all day. They decided they wanted to have some people over for a bonfire. I figured why not, even though I was insanely tired and worn out from the long day we had just gotten back from. Now for me, being tired sets my tics into overdrive. My body is exhausted, my nerves are shot and I don’t have the willpower to hold them off. I didn’t think much of it because even though I could feel myself doing my eye tics more often than usual, I had pushed it to the back of mind because I figured no one would say anything.

Well, that’s where I was wrong. Twenty or so minutes later, all of the people had showed up. One boy in particular stood out to me. Three things I could instantly tell about him were that he was arrogant, someone who didn’t have a filter and a not so nice person.

Little did I know, he was going to be the person to bring me to my breaking point. The person to finally bring me down, all because I had Tourette Syndrome. The first person in, I don’t know how many years, to actually get through my barrier and hurt me. All because I was a little different. Although this was about three or four years ago, I still remember it so clearly. We were all sitting outside by the bonfire, it was about 10 p.m. and I was growing more and more tired, which meant my tics were acting up.

I was wearing my oversized sweatshirt that made me feel protected from the world, minding my own business, watching the flames rise up from the bonfire, when I heard it.

“Hey girl over there in the hoodie, what’s wrong with your face?”

In all my years of having Tourette Syndrome since I was 7, never have I once had anyone bluntly say “what is wrong with your face?” I can’t even begin to tell you how much those words stung. I held in the hurt and said nothing, hoping by not meeting his gaze he would just forget about it. But boy, was I wrong.

“Hey I’m talking to you. Seriously, what’s going on with your face?” he said, laughing.

I played it off and said the smoke from the fire was bothering me. He arrogantly fired back, “No, you’re winking at me aren’t you? Awww how sweet, hoodie girl wants a piece of me.”

Everyone laughed. I sat there, feeling a wave of fear overwhelm me. My whole body started to tremble. Tears stung my eyes. And I tried my hardest to hold in my eye tics. But with Tourette Syndrome, you can never completely hold in your tics. The harder you try, the worse the urge gets.

I managed to whisper “I don’t want any part of you. The smoke is just irritating my eyes. Please leave me alone.” I didn’t look up at him once and I forced myself to stare at the fire. To ignore him. But all I could feel was his eyes watching me, waiting for my tic to happen again. As the urge built, I unfortunately couldn’t hold it in any longer. The urge was too much to resist and it happened. And then finally, I was brought to my breaking point.

“There it is! Again! God, would you just admit you want me? It’s clearly obvious with you winking over there at me. You want me so bad.” I didn’t say a thing, I could feel the panic start to set in and I just sat there, my hands going numb, listening to him verbally attack me.

“Well I don’t want a piece of you, not with you twitching all weird like that.”

I quietly said, “Please stop. I don’t want anything to do with you and I’m not winking at you. I have Tourette’s, OK?”

And he fired back, “Tourette’s? Ha! Well good because I knew just by looking at you there was something wrong with you and your face. Honestly, you should see how ridiculous you look.”

And the next thing I knew, I just ran. I don’t know why it hurt so bad, but it did. I got up and ran and tears were falling like crazy and my heart was hurting and I just had to escape. All the while, he yelled after me “Oh look, she’s crying like a little girl.”

And everyone laughed. To this day, that was the worst encounter I’ve ever experienced with someone making fun of me because I have Tourette Syndrome. So, to this boy, whose name I don’t even know: I realize you probably think you got the best of me, that you had the last laugh, and that you think you’re some kind of man because you made a girl cry. But you are no man to me. You are a bully. And I am so much stronger because of you. So I actually want to say thank you.

Thank you for being so cruel to me. Thank you for making me cry. If you hadn’t, I never would have had the eye-opening realization that there isn’t anything wrong with me, there was something wrong with you. I hope you don’t go through life feeling so insecure that you feel the need to bring others down. I hope you are able to understand the differences of others, just like I’m sure you would want others to understand any differences of yours. And I hope when you’re older and hopefully more mature, you think back on that night and remember what you said to me and feel bad.

But I don’t feel bad about it anymore. I’ve let it go. I’ve used that hurt to do something I had always wanted to do, but never felt I could do. I’ve finally accepted I am OK with having Tourette Syndrome and people are going to make fun of me and judge me, all because they don’t bother to understand. But I won’t let it bother me ever again because I realized that night there is nothing wrong with me, there’s only something wrong with society’s stigma of those with Tourette Syndrome.

So to that boy who made fun of my Tourette Syndrome, I really want you to know something. I love who I am, Tourette Syndrome and all.

And I don’t need your approval.

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It's OK to Ask About My Tourette Syndrome

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As a young child, I was constantly told by adults and other children that I was “different.”

Sometimes, when people pointed out my differences, they focused on the good things. More often, they seemed to focus on how I didn’t act like other children. My coordination was poor and I was very bad at sports. I blurted out random nonsense and I often dropped things for no reason at all. Sometimes I’d fall into things or trip over nothing. As I got older, people started to notice my facial tics and how I could never control how often I blinked my eyes. A lot of people assumed I was lying all the time because of my hands touching my face or my inability to make eye contact. 

This followed me to adulthood. I tended to hang around online where my awkwardness wasn’t obvious. I still had trouble making friends and had been through hundreds of awkward job interviews. Even though I wanted to do something about what my body and mind were doing, I wasn’t sure there was a cure, much less a diagnosis. Sometimes, I would be kept up at night simply wondering what was causing my pain. Muscle tics are painful to me, especially in the face and hands. Emotionally, I was constantly hurt that no one would trust me simply because of physical movements that I had absolutely no control over. I felt depressed and suicidal. I felt like I would never have close relationships with “real” people.

Until a doctor casually mentioned that I might have Tourette syndrome (TS), I was lost. I had wrongly assumed my tics were caused by depression and anxiety and that it was all in my head. After researching, I realized it was likely the other way around and that a lot of my anxiety and depression came from my experiences living with TS. At first, it was hard to admit something I had very little control over was affecting my life in such a profound way. Over time, with help, I learned to accept TS for what it is and not to be ashamed by it. 

I still feel awkward most days, but I have learned I am very open to people simply asking me about my tics and random odd noises. I would rather engage in a conversation than be stared at and whispered about. It really is OK to ask! It is therapeutic for me to engage with people and hopefully share some information that they didn’t know. If you have TS, know you are not alone. It is embarrassing at times, but you shouldn’t feel shame over it. I want to engage with you, too. I want to talk with you and share similar experiences and explore different ones. I want you to know about my experiences. It is through shared knowledge that we learn and grow. Maybe you aren’t at the sharing stage yet and that is OK. It took me a very long time to be comfortable in my own skin. TS may be a monster sometimes, but it’s one that can be put in its place.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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My Tourette Syndrome Is About More Than Cursing

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Tourette syndrome. When I tell people I have it, their first question is almost always, “Do you curse?” My answer, “Of course. Usually not because of my Tourette’s though.” Only 10 percent of people living with Tourette syndrome curse. I am part of that 10 percent. I am not ashamed of that.

But just as only 10 percent of people with Tourette’s curse, less than 10 percent of my Tourette’s is cursing. It is 90 percent restlessness. A kind of restlessness that reaches through my mind, body and spirit. It can hurt at times (literally and figuratively), and it can drive a kind of energy, creativity one might even be thankful for.

For me, having Tourette’s means living in a body with arms that jerk, legs that kick and muscles that tighten, sometimes all at once several times a day. It means throwing my neck back, my head back. Repeating myself. Sniffling. Barking. Squeaking. Making high-pitched sounds. Having my body hijacked.

It makes being still an incredible challenge for me. Physically or mentally.

Having Tourette syndrome, for many of us, can mean living with “comorbidities” or what I like to think of as friends that tag along. For me, this means living with obsessive-compulsive disorder (OCD) and ADHD. It means having my mind stuck on one fear. Repeatedly. Repeatedly. Repeatedly. What if I misspelled that name? What if I made a mistake? What if I lose my job? How can I check? How can I make this better? Repeat.

It means tripping on details and doing everything I can to compensate for that. For me, it means becoming the queen of Post-it notes, carrying two calendars, and praying for other people’s mercy (and my own). I am doing my best, and I am always trying to do better.

Having Tourette’s does not make me less of a person. The restlessness has bred in me compassion for others’ invisible struggles and their own fights. I feel my struggle with details is compensated by my affinity for patterns, and the intense work I put into each day has made me a heck of a hard worker.

I am grateful for these things. Tourette’s has shown me a corner of the world I might not have known of, given me a reason to become a counselor, and I think it has made me more effective as a counselor. It has given me a restlessness to want to help others through this and similar challenges. It has given me a restlessness to advocate for the many injustices faced by people living with mental health conditions. Finally, it has given me a restlessness to want to teach others that Tourette’s is not a cursing disease. Yes, 10 percent of us may experience cursing tics, but for me, it is 90 percent restlessness.

Image via Thinkstock.

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How We Learned to See My Son's Tourette Syndrome as a Blessing

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Whenever I talk about my son having Tourette syndrome, I feel weird about the word “syndrome.”

By definition, it’s not a derogatory word:

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 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 t 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 five main ways:

1. When we recognized the correlation between TS and a passion/talent for creative arts: music, writing, acting. We recognized 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.” We learned his tics felt normal and good to him… they were part of him.

Over the years, I came to deeply believe 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 theater, 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 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.

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 we realized our child’s TS was pointing a finger at us to become more introspective about our parenting and the reasons behind our 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 became distinguishable that it was none other than his TS (and ADHD and other challenges) that solidified the core of our family. We’re closer than we could have imagined because we’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.

Image via Thinkstock.

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To the Boys in the Restaurant I Caught Filming My Son With Tourette's

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“Shaking a little bit does not change someone’s personality. It doesn’t mean you won’t have a successful life. Having Tourette syndrome just means I move a little bit. It has been both positive and negative. I feel different, but I kind of like being different. Sometimes people stare at me and I’m embarrassed. It’s OK if they don’t know and I respect that, but staring makes me uncomfortable. Maybe if people knew more about TS they wouldn’t stare. I completely get that not everyone is going to understand it. But they could try and learn. I do know I’m really good at guitar. I love music. My favorite bands are The Beatles, Guns N Roses and Shinedown. Hard rock is my favorite. I want to be a rockstar and start a band or join a band. I just want to play lead guitar.”

These words came from my son. Life is not always easy for him, but he has a great attitude about it. I am sharing this for many reasons.

One of which is this:

The other day we picked up my husband for lunch on his break and tried to have a little family time. The restaurant was busy, and sometimes when places get crowded, it increases my son’s tics. His tics are mostly motor (hand shaking, blinking, tapping things), although he has a few vocal tics (whistling and occasionally a little crack in his voice). As we sat there, I noticed two older boys, probably 13-ish years old. They wouldn’t stop staring. They were sitting with whom I assumed to be their dad. My son noticed their eyes on him, which increased his anxiety. I just kept trying to distract him to keep him from focusing on them.

Mind you, I was ready to slap their dad. He did nothing to stop them. (I don’t condone violence, but I’m just being honest…)

As time went on, I noticed one of these boys had gotten his phone out and was recording my son. Mama bear was ’bout to have her porridge hot. I was fuming but didn’t want to embarrass my son by drawing even more attention. Luckily, we were in a booth and I laid him down on my lap and rubbed his back so he was out of their view. I wanted to lose it. I wanted to grab that phone out of that dude’s hand and throw it. It was hard, but I restrained myself in that moment. I was respecting my son. He is basically just a better person than I am.

Here’s my message to those boys at the restaurant:

Please know this… I know you have that video of my 9-year-old son. Keep it. Save it. Don’t delete it. Let it remind you of what you did to hurt someone that day in the restaurant. Your staring embarrasses him, but you are no match for his spirit. You see, my son is not sitting around staring at people and trying to record those who are “different” than him. He’s not going to run over to Instagram and show his friends someone else’s neurological disorder for fun and laughs. He is busy. He is busy practicing guitar, writing songs and working hard to overcome people like you. Seriously boys, keep your phones charged. Because one of these days when you are at a concert waiting for that band you’ve been wanting to see and you look up on stage… you’ll want to record him again. Trust me. He’ll be amazing. He’ll have worked to accomplish his dreams. My son has a photographic memory. He’ll most likely remember you and throw you a guitar pick. That’s just the kind of person he is. He has Tourette’s. It doesn’t mean he won’t be successful in life. It’s OK with him that he’s a little bit different. Nothing will stand in his way, especially some kids with a phone their daddy pays for. So maybe he shakes a little bit. So what? It doesn’t change his personality. He inspires me every single day. I truly in my heart hope somehow this story finds you and inspires you too. Maybe if you knew more about it, you’d understand. So try and learn, OK? Oh, and I’m not gonna lie… I still want to smack your dad.

Piece of advice: Keep that video, dude. It may be worth a lot of money someday.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. Check out our Submit a Story page for more about our submission guidelines.

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