One Small Step for Boy, One Giant Leap for Tourette Syndrome

I made cake all by myself and homemade icing...#proud

My son has gone back and forth about wanting to talk about his ‘ticks.’

That’s what we call his Tourette’s and OCD in our house. They are simply known as ‘my ticks, Mom’ or ‘…because of my anxiety.’

So when a writing assignment came along in school this week- very innocently, just the usual daily few sentences with a writing prompt to get them going- he froze.

He tells me some kids were writing about beating bosses on video games. Something he has done over and over again and is very proud of.

He tells me some kids were writing about no longer being afraid of spiders, or in the case of one kid, getting ‘bumped’ by a shark.

You gotta love 4th graders.

And there sat my son, debating with himself back and forth and back and forth if he should tell his teacher or his class or anyone that every single day he battles and overcomes all the zigs and zags of his brain. His brilliant, sensitive, amazing brain that causes him to (currently) do everything in ‘3s’ and mutter the last word of a sentience under his breath three times or hand wash and hand wash and hand wash or hand wash.

His ticks come and go with his anxiety level and he can control them very well with all the tools from our therapist. His ticks also change constantly. Sometimes they rotate and a new tick I’ve never noticed before is suddenly very prominent while another has faded. Some fade and never return. Others seem to be on a regular rotation. Regardless, he handles them with more grace and ease than any child should have to and he has zero shame or embarrassment.

At least, he didn’t. Until he began to mature and realize not everyone does what he does. Not everyone flaps their hands and jumps up and down while playing a video game, simply because it’s exciting. Not everyone covers their ears during a school play, because the cheers are too loud. Not everyone cries while looking out the window of an airplane, simply because theĀ earth below is so beautiful.

Not everyone would take an in-class writing prompt home, so he could talk to his Mom about whether he should tell everyone he has Tourette’s.

I think they should know, but I’m not ready to really talk about it. I don’t want to give them a speech or anything. But maybe they won’t bug me so much then.

My stomach did a flip.

What do you mean ‘bug you’… has anyone said anything?

Well no, not really. But you know my friends they don’t care but some of the other kids might look at me and think I’m weird. You know Mom, I know I’m a wimp.

You are not a wimp. Why would you say that?

Well, I don’t mean that like a bad thing. I like video games and I’m not into like sports and stuff. And I’m a geeky wimp kind of kid, not like a kid that pushes other kids outside and plays those games where you punch arms and stuff.

There are LOTS of kids at your school like you buddy. LOTS. It’s great to have all kinds of friends and maybe it’s time to find some more of those kids that are like you.

But if I tell them about my ticks, they might think I’m even more weird.

Or maybe, they will better understand you and like you even more for who you are. But you can still write about anything you want honey. Anything.

…and he gets up and does this thing he does…his running from our front door to our back door. Something he just does that I’m sure is a tick, but we’re so used to it that it doesn’t register. He’s thinking. This is how he thinks. Sprints in my living room. Always having to touch the door a certain number of times. Always needing to ‘balance’ it out with exact same number of touches on the opposite wall.

Mom, I’m going to write it, but I’m not going to write a lot. My teacher might be the only one who sees it anyway, but maybe not. And maybe someone will ask me what I wrote. But I don’t want them to know too much. I will just write one thing about what I overcame and that’s it.

Pride

..and with that one thing, he took one very big step.

Comments

  1. Jack, I teach sixth grade and I wish more young men were as be brave as you have been. My class could learn a great deal from you, from your mama and from life in general. Keep your chin up, Jack … and smother Hala, your mama and Pops, too! … All in love from the NCA mamas

  2. Good for you, dude! You’re awesome and amazing and brave. Keep being the best version of yourself that you can be and life will be grand.

  3. You rock, dude! It takes some courage to be as strong as you. Never give up!

  4. antonio Angelo says:

    Everyone is unique, we all have things that make us special. Never fear someone not liking you when you tell them who you really are. People are afraid of things that seem strange to them. Only after they become familiar will they accept the little things that make you like all the rest of us unique.

  5. Good for you! There are a lot of adults who couldn’t do what you did. You are so brave, and awesome! I wish there were more kids like you. You rock!

  6. Wimp? Yeah, they used different words, like “queer” (in both senses of the word) in the early 60s. Always the last one picked for games. No good at sports, but bothered by it only because your friends didn’t really want to play those games with you.

    Practicing doing ordinary things in private. Sometimes just reaching for the doorknob over and over, till I grabbed it every time, working to overcome the horrible clumsiness caused by lack of oxygen to my brain during birth. Trying very hard to work my way up to just being an ordinary klutz. Practice that became ticks that I hid from everyone. Nobody talked about OCD back then. Some things you figure out later.

    Lying awake in bed awake most of the night one night in 5th grade going over the contents of an oral report in my mind over and over, dreading the morning when I would have to take my stutter to the front of the class. And then, because I had genuinely become interested in the subject of whales and whaling, something happened. I just talked. And the teacher and my classmates listened in amazement while I did something I had never done before- Spoke not for the few minutes the report was supposed to report, but for almost an hour, without a stutter. Then answering questions without a stutter. Then I went back to my seat and I was just me again.

    But it was a start. By the time I entered Junior High I almost never stuttered unless upset. I’m still a klutz at 58, and collect bruises the way some people collect compliments. Life for someone with ticks of various sorts has some extra speed bumps, and like any life has ups and downs. But it can be a good life.

  7. Right on, Jack! That took courage, and I’m incredibly impressed. It’s not easy to share stuff like that, I know this from experience as a forty two year old. So to see you, such a clever and caring boy, be so bold and brave. brings tears to my eyes. Your parents must be so very proud of you. Thank you for sharing this with us all.

  8. Sheryl Dunn says:

    Hi Jack! I have mild OCD and anxiety too, but I was never brave enough like you to tell people until I was much older. Great work!

  9. Hi Jack!

    I just want you to know that by writing that, you’re braver than many, many adults. Good job!

  10. Jack,
    A good writer will tell a deep truth.

    A great writer will tell a deep truth in a kind, all-seeing way.

    Hardest of all is for a writer to tell a deep truth in a kind, all-seeing way *about himself.*

    It seems to me you succeeded. Lock on to your voice and tell the story of you as only you can.

    By the way, my son’s not very sporty either. And he likes a bunch of the same things you do. You’ll all find each other in college, if not before. :)

    xxoo

  11. Awesome job! You know, everybody has their tics. They might not be actual tics but everybody’s got something that makes them a little different. But that’s just it, we are all different. You are just brave enough to share, to write it down. Good for you!

  12. Well, that’s just awesome! And by the way, NOT being one of the kids who “pushes other kids outside and plays those games where you punch arms and stuff” makes him even more awesome. It sounds like what he’s been dealing with has allowed him to get to know himself so much better, become more grounded, than he ever would otherwise.

  13. Bravo, Jack! Celebrate who you are and continue to live life to the fullest. My brother has/had Tourette’s Syndrome and he dealt with the same things in 4th grade over 17 years ago. He’s grown to be an amazingly successful man – all of his challenges pushed him to do great thing…and he still loves his video games!

    Keep at it, buddy!

  14. This is the most courageous post I have ever read! <3

  15. My younger son has severe Tourette’s. I didn’t know it ran a spectrum until I had a child with it. I can’t even list all the things I didn’t know. The gallop to think is a gross motor tic. That much I know from my son’s Physical Therapist. He has an Occupational Therapist as well to help him learn to work with the fine motor tics.

    He was in our award-winning local public school until this year when I took him off the medication that controlled some of his more disruptive tics. Unfortunately it also turned him into a fat, little zombie. When he came off his personality returned, and only then did I realize how much I missed him. So we’re keeping him off medication and I’ve begun homeschooling him. This was not my life dream — homeschooling — but I will do what my son needs. We have seen a lot of his anxiety, and therefore tics, diminish in our calm setting.

    I’m not a yoga person, but I did so much research and yoga can help children with tic disorders, TS and other milder ones, tremendously. It did for my child. We bought YogaKids 2 on DVD. Anyway, sorry to write a novel. I just meant to say hi. Hi!

  16. My fiance has Tourette’s and I’ve asked him to leave a comment when he wakes up.

    I have bad anxiety, PTSD, and OCD tendencies. I know what a struggle it is as an adult to tell people and I think you are so so so brave to write about it for class. It’s also brave to ask your mom to write about it on her blog to get other people talking about Tourette’s and OCD.

    I know your parents are proud of you no matter what you do but I think you just made the entire internet proud.

  17. So, Brendazzle left me a link and asked me to take a look before work this morning. I, too, have Tourettes Syndrome.

    In fact, I first discovered that my verbal and motor tics were “abnormal” in the 4th grade after several disciplinary actions from my teachers. Eventually my family got wind of the conflict after two weeks of lunch time detentions, and they took me in to see several psychologists and neurologists, who ran tests and brain scans and concluded that I had Tourettes Syndrome.

    As an adult, I still have motor tics involving the neck, face, and hands, but it isn’t something that I am ashamed to tell people about. Middle School, High School, College . . . I always made sure that the people whose opinions mattered (Teachers, Friends, and the occasional young lady) knew about the tics and why I made them. Even in a high stress workplace (I work at a national call center for a major corporation), I’ve managed to control my tics by channeling them toward constructive things, like finger snapping and fist pumps. Most people in my Department just think that I sell a lot of products ;-D

    As you go through school, and college, and life, try not to feel ashamed of your tics. In my experiences growing up with Tourettes Syndrome, people are more likely to be curious about what it is and why we tic than they are to make fun of you or think that you’re weird.

    D

  18. Oh Jack, you are just about one of the coolest kids I’ve never had the pleasure to meet. (Maybe someday). I have a son who is 13 and you have a lot in common with him…..he’s also a big video game player, he doesn’t do sports, he battles a little with anxiety and some minor ticks, and might be considered a little wimpy, but most importantly he’s sensitive and caring and he has a huge heart and I have a feeling you are exactly the same way, which makes you pretty darn awesome in my opinion.

  19. Way to go Jack! Simple and straight to the point. I’m in awe of the courage and strength you (and you mom) show daily.

    Thank you.

  20. Hey Jack

    Just wanted to say that I am so proud of you for overcoming these things! I also think that you’re pretty amazing for having the courage to admit these things. You are so brave and there are so many people who are so proud of you.

    Your bravery and willingness to admit these things has inspired me this morning to try and admit some of my own things and take some steps overcome them. If you can be this brave and do it – maybe I can too. Thanks for being so awesome!

  21. Dawn Evenson says:

    Erin-

    I’m writing this through tears. I have no words….other than: WE LOVE Jack! I am so proud of him, his willingness to share and his self-acceptance. Wow!

    Thank you for sharing this. If he ever needs a “hand to hold” when he wants to speak up–we are all there for him.

    Dawn

  22. Gah, this brought a tear to my eye. What a great kid you have, Erin.

  23. Jack! You ROCK!!! Thank you for sharing. You are an amazing young man, can’t wait to hear about the great things you are going to accomplish!!!!!

  24. thank you all very much. We’re on our way to school but Jack just read a few of these and gave me a high five and just said ‘wow, wait…these are for ME?’

  25. Jack, you are a brave and smart and interesting writer! We teachers don’t always know when what seems like an easy start for a writing assignment turns out to be something that taps into something that is so important and personal and complicated for a student. You are writing beautifully.

  26. Way to go, kiddo!! You are awesome!

  27. A friend linked me here, as I’m a 31-year old with Tourette’s. Jack’s experience sounds in many ways like mine growing up. My family struggled to understand my behavior until I was diagnosed in 4th grade–none of us knew what was happening and it was frustrating. I don’t remember having a sense of shame per se, but I was teased, taunted and bullied over it.

    In 5th grade, we were doing a unit on “the brain”, and my wonderful teacher worked in a video about Tourette’s. I specifically wasn’t in class during that session, but it was like a switch was flipped. In a matter of an hour, all the teasing stopped. Only one kid tried to tease me, and every other classmate made it clear that they wouldn’t have it. It really was a point that changed my life.

    I don’t think I would have been able to properly communicate my experience to my peers, at least in a way that would have conveyed the understanding I did reach. I think it’s great that Jack is ready to talk about his Tourette’s to other kids, and I hope it goes really well. If the other kids are confused, other resources (I’d bet there are good videos on YouTube) might be helpful to share.

  28. That’s awesome! My son, Mark, also has Tourettes,

  29. what an awesome, brave kid. you are raising such strong children, erin. you should all be proud of yourselves.

    stay brave, Jack! we need more kids like you!

    the Geeks shall inherit the earth.

  30. Juliann aka The Sick Chick says:

    Way to go, Jack! I have a different kind of brain problem and when I was a kid they didn’t think kids got it, they only thought grown ups got it, so they didn’t know I had it. So know one really knew why I was so weird. It was hard.

    You’ve done a very great thing. Keep up the good work.

  31. Juliann aka The Sick Chick says:

    Oops, I meant to say “no one” not “know one” :)

  32. So much bravery and courage from one little boy and a few short sentences. Let Jack know he is an inspiration to grown ups.

  33. One more thing: we always disclosed George’s Tourette’s when he was in school, so that kids would get why he didn’t get in trouble for galloping or hopping or twisting or grunting. I didn’t want anyone to think George was catching breaks when other kids were not. We also wanted to be VERY clear about what Tourette’s was not: contagious, life-threatening, or a behavioral issue.

    We did our reveal the same way every time (morning and afternoon classes): we read a book called Tic Talk (Jack would love it – it’s very sweet) and then answering questions. It was like 30 minutes at the beginning of the year and thereafter it was pretty much a non-issue. A few kids from other classes would call him weird on the playground, and George’s classmates would become fiercely protective of him and defend him and then tattle. The only really awful experience he had was with a specials teacher who didn’t know and punished him. That was a dark day, but rest assured Mama Bear handled it very quickly. :)

    George also has OCD (common co-morbidity) and anxiety (again, common). He’s a history fiend though, loves animals so much we can’t even have animal shaped pinatas (he decided it’s not kind to hit animals even in play), and is the funniest 10 year old kid I know, even if he can’t hold a pencil very well.

    Sorry to blather on.

    Best,
    Lucy

  34. Love him!! and at the same time I’m sad to know that he’s wired like me, because sometimes OCD can be so mentally exhausting and frustrating. Luckily he’s an amazing kid with a fantastic mama, and he’s gonna be just fine!

  35. You have something very few people have,,,courage and a very keen mind and warm heart…..your school essay should be a lesson for all other kids who feel that they too have something that they have to live with…you have given them the couarge and strength to lead a full, productive and normal life. I am 84 years old and your letter is something that I can, even at my age, find very helpful when i think that things could be better……I am going to see that my four daughters and six grandchildren read your essay, as I am sure that they can learn a lot from it. Keep up the good work….oh, yes, did you know that Alexander the Great, who in his teens, conquered most of the world as we know it, and he had a severe brain condition that he didn’t allow to hold him back..Go to it, we are all behind you..we need anothe great man like Alexander!!!!.

  36. Awesome, Jack. You’re a brilliant and brave kid!

    He’s learned his courage from his highly courageous parents.

  37. I don’t know if it would be of interest to you, but there is something called HANDLE that can have very good results with those with neuro-developmental difficulties, including Tourette’s. Best of luck.

  38. I’ve been a lurker here for some time. This young boy’s courage is awesome. It’s not easy to speak out about something so personal that might put a label on him. Good for him and good for you.
    My son just recently wrote his college application personal statement and much of had to do with overcoming his Dyslexia.
    We’re on Jack’s side.

  39. Mohameds mom says:

    What a great kid! He reminds me of my little guy. You are very brave and i’m sure you’ll grow up to be such an awesome adult!! I’m going to show my third grader with Tics and OCD your great writing assigment!

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