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How To Have Tourette’s Part 9 – Better Than Fine

This post is by one of my friends, about one of my heroes: Jacob McGee.  Jacob, if you’re reading this today, you need to know that I look up to you, and I don’t look up to very many people.  You’re the best!  Josh.

By Michelle McGee, Moxie Momma

sketchbook-mother-and-sonAs the mother of a child with Tourette Syndrome, I have spent a lot of my time searching.  Searching for answers so that I can help Jacob overcome TS.  Searching for strength within myself so that I can be strong for Jacob.

But also searching for acceptance because deep down I know that this is who Jacob is.  After 6 years of searching I can finally say that I have found some answers.    As Jacob says, “Everyone has a challenge and Tourettes is mine.” 

The Search For Proof

So my challenge is that my son has TS and I have to accept the fact that I can’t “fix” him.  More importantly I have to realize that he doesn’t need fixing.  He is who he is – and that’s okay.  In fact, it’s a blessing because Jacob is a kind, sympathetic soul who understands that being different is not a curse and without TS he might not be that person.

But the one thing I still continue to search for is proof.  Proof that someone like Jacob can find happiness as an adult with TS when he heads out into a world that can be pretty harsh to someone who is different.  I search for success stories – people who have TS and have thrived in spite, or even as a result of the complications it can cause.

It’s easy to search for TS stories and find the sensational ones – the ones the media likes to exploit.  They paint a very dismal scene.  And although I know there are people who inhabit that landscape, I choose to fill my mind with the positive stories – the stories that prove that happiness can come to anyone.    I have been very fortunate in my search for such stories – Josh is one of those stories.

Camp Twitch

Another great story is the one about a teacher in Georgia, Brad Cohen, who, despite being discouraged by many people when he said he wanted to be a teacher, went on to become Teacher of the Year.  He also started a camp called Camp Twitch and Shout for kids with Tourette Syndrome.

These are the stories I share with Jacob.

And although it may sound silly to some, probably more important to me than the fact that both of these amazing men are successful in their lives, is the fact that they are both married – that they have found someone who loves them and accepts them.    There are plenty more positive stories about people with TS, and a new one is in the making – the story of my son, Jacob McGee.

He is going to be better than just fine.  In his words, he is going to “change the world”.  And you know what – I believe him.  Best of all, I know that he will have someone to share all of that change with.

About The Author: Michelle McGee writes the blog Moxie Momma, where she writes about “Tourette’s, Testosterone, and Life in the Sass Lane.”

Comments on this entry are closed.

  • Henri December 2, 2009, 4:51 am

    To be honest, I’ve never met anyone that has tourette’s, but seeing you and Josh share yours has really shed some light on it and I’m inspired in my own way. Love it!

    • Michelle McGee December 2, 2009, 10:18 am

      I’m glad that my story has inspired you. I think the lesson applies to so many aspects of life – not just TS. Thanks for reading!
      Believe,
      Michelle

  • Kevin December 2, 2009, 6:46 am

    Hey Michelle,

    This is an awesome post. My daughter deals with similar but different challenges. She has CP, Cerebral Palsy. Earlier this year she had someone call here weird. She’s six by the way. IT was the biggest fear I had from the time we diagnosed her. But as with falling we explained that no one can stop you as long as you keep getting back up. She has this concept down and with some help from my Mother-in-law they wrote a book called “I’m Not Weird!” and she read it to her class at school. Were actually in the process of publishing it now. Anyway best of luck to you and your son. I know you will both get back up from all your challenges.

    • Michelle McGee December 2, 2009, 10:20 am

      Kevin,
      I have a friend whose daughter also has CP. I’m so glad that your daughter understands that her challenge is not something to hinder her in any way. That’s awesome about the book. I’d love to get a copy when it’s out. Please let me know. Good luck and keep on believing!
      Michelle

  • Ideas With A Kick December 2, 2009, 8:50 am

    Hey Michelle,

    I think they way you see TS, as something that just is, doesn’t need to be fixed and that’s okey is really deep and powerful. I wish more people would see a lot more things this way, not just TS.

    Respect,

    Eduard

    • Michelle McGee December 2, 2009, 10:21 am

      Eduard,
      I do think acceptance is a powerful thing and is applicable to so many aspects of life. Maybe one day we’ll all realize this and the world will be a much better place to live. Until then,
      keep on believing! Thanks for reading my post.
      Michelle

  • Srinivas Rao December 2, 2009, 9:10 am

    Michelle,

    My best friend has tourette’s. We became friends after I graduated from college. Just to share some highlights from his life with you:

    1) He is an amazing tennis player who was state-ranked in high school
    2) He graduated from MIT with a bachelors and masters in engineering
    3) Today he works at a hedge fund and is extremely successful
    4) He’s also one of the greatest people I know.

    So hopefully that’s one more story you can add to your collection to inspire your son 🙂

  • Michelle McGee December 2, 2009, 10:22 am

    Thanks so much for your positive TS story. I will definitely share it with my son. These are the stories that need to be told because these are the stories that inspire greatness! Thanks for reading.
    Believe,
    Michelle

    • Vern Wolfgram March 8, 2012, 5:09 pm

      Michelle,

      My 15 year old son, Austin, was diagnosed with TS in 2006.
      He is our hero without question. Despite his daily challenges, he is positive, enjoying the present, and hopeful for the future. Your message of acceptance and that TS “doesn’t need to be fixed” is right on. TS by no means defines a person. TS, in many ways, has made him the remarkable, successful young man he has become.

      Thank you,
      Vern Wolfgram

  • Jessica Marie December 2, 2009, 12:02 pm

    What a great post. I wish everyone was more accepting.

  • Larissa December 2, 2009, 12:40 pm

    Hi Michelle,
    Thank you so much for sharing this. (And thanks, Josh, for posting it) Reading this was like reading a page out of my own journal. I did not start off the journey this way, though. When my son was diagnosed with TS six months ago, the first thing I did was search for a cure. It was so overwhelming! It’s probably only been in the last few weeks that my husband and I have really come to terms with accepting this reality. But I feel like we had to go through that initial, almost grief-like process to get to where we are now. Now I can see Ethan fulfill all the dreams that he’s always talked about. I can see him using his passionate personality to encourage others to make things happen. And this has served to motivate him to continue to do his best, and prevented me from making excuses for him not to try.
    So thanks again, and now I’m off to check out your blog. . . 🙂

    • Michelle McGee December 2, 2009, 3:40 pm

      Hi Larissa,
      Great to hear from you. We tried several things when Jacob was first diagnosed. I have friends who have had success with a very regimented diet, but sometimes I wonder how we can really tell if we are successful with the wax and wane nature of TS. I didn’t go the diet route though I do limit excessive amounts of sugar and no caffeine at all (unless he’s staying with someone else :). I’m glad to hear you are coming to terms with Ethan’s diagnosis. If you ever need someone to talk to who understands, I’m here. I’ve made several connections with other mothers and it has been so helpful for me.
      Thanks for checking out my blog. I’m in the process of updating it to make it easier to navigate and make it visually more appealing. So be sure to check back often if you like you what you read. There are several posts on TS there.
      Believe,
      Michelle

      • Larissa December 2, 2009, 4:19 pm

        I’ll probably be shooting you and email in the next couple of days, but I have to tell you that I just read your profile a few minutes ago, and we have something else in common. . . I have a tatoo of a blue poison dart frog too, but it’s on my back! LOL! 🙂

        • Michelle McGee December 2, 2009, 7:10 pm

          Ah, Larissa, aren’t those frogs just the greatest!? I’m a huge frog fan. And I was told if you ever get one tattoo you will get another. I didn’t believe it until….a few months ago I had the word “believe” tattooed on my inside right wrist. There’s a story in this tattoo – I got it on my right wrist because it is my writing hand. I had to have a word because I’m a writer and this a word that I say to Jacob every night before bed. It’s all over my house in one form or another. And I had it done in all lowercase typewriter font. Lowercase because I want to be reminded of the small things in life. Thanks for checking out my blog. I look forward to hearing from you!
          Believe,
          Michelle

  • steve December 2, 2009, 2:19 pm

    Great post, Michelle. Jacob has a great head-start because he has a mother who understands and accepts. When my tics first surfaced 30 years ago, nobody knew what TS was. My parents did the best they could to understand but I know it must have been hard. I was 19 before I was officially diagnosed, and just being able to put a name to my condition was a relief. I’d like to add to your list of success stories. I had wonderful friends through school and college. I am 38 and, unfortunately, my tics have not lessened as they do for most. But I have a fantastic wife, a great job and two beautiful girls. I watch them hawkishly for tics, but I know if, God forbid, they have TS, we have experience and info on our side! Keep up the good work.

    • Josh Hanagarne December 2, 2009, 2:37 pm

      Steve, I’ve been obsessing watching Max for tics, and he’s only 21 months old. I’ve already managed to convince myself that a toddler’s fidgets are tics. I’m so happy to hear about how well your’re doing with everything. Hats off to you, friend.

      • steve December 2, 2009, 2:56 pm

        And to you! I can’t believe I’m just now finding your site but it’s great. Can’t wait to read each installment.
        My Katie is 8 (the prime-time to start tics) and has occassionally exhibited throat clearing (which is my primary outlet.) I’m kind of fascinated by what some have suggested, that this could be involuntary mimic behavor. I’ve also heard that almost all kids go through some type of tic stage, but as you know, we in the TS crowd are a bit more sensitive.

      • Michelle McGee December 2, 2009, 3:42 pm

        Josh, I watch my 3 year old every second looking for signs of OCD or TS. Looking back now knowing what I know I can see that Jacob was ticcing when he was 3. So far with Nick I’ve seen no signs. But if I do, at least I know what it is and how to accept it.
        Believe,
        Michelle

        • Larissa December 2, 2009, 4:27 pm

          Do you guys know what the likelihood is of siblings with TS? We’re starting to see some signs in my younger son, but I’m worried that it might just be my being hypersensitive to it right now. 🙂 Thanks!

    • Michelle McGee December 2, 2009, 3:48 pm

      Steve,
      Thanks for sharing your story. I’m so glad Josh posted this because I’m getting the opportunity to add to my positive stories. It must have been difficult having such a delayed diagnosis. I’m so glad to hear that you are happy and fulfilled in your life.
      Believe,
      Michelle

  • Wendy December 2, 2009, 4:12 pm

    Thanks, Michelle! And thanks for having her as a guest, Josh. My 10 year old son has TS and we’re working on giving him the words to say when the other 5th graders ask him why he’s making that noise or shaking his head all the time. I gave him Jacob’s quote this morning on the way to school – what a great kid you have! We’ll be visiting your blog often.

    We recorded Front of the Class when it was on tv last year and we watch it every so often – I’m with you, we need to have these positive stories in our lives.

    • Michelle McGee December 2, 2009, 8:38 pm

      Wendy,
      I shared your post with Jacob and he was thrilled to know he had been quoted. He said, “Do you think that could be a famous quote one day?” Why not?
      Anyway, thanks for reading the post. And thanks for visiting my blog – I have a new and improved version on the way.
      We live in Georgia, so we had the opportunity to meet and hang out with Brad Cohen. He actually came to our house. What an amazing guy! I am working with him to raise funds for Camp Twitch and Shout. Brad’s story is such an inspiring one. He actually told me that Jacob reminds him a lot of himself. Jacob told him, “I’m going to be the next Brad Cohen!”
      Keep in touch. I’d love to hear how your son is doing. We all need to support one another.
      Believe,
      Michelle

  • Beth L. Gainer December 2, 2009, 4:29 pm

    Michelle,

    This is such a poignant peace. I agree that the media and movies exploit all kinds of conditions. I have no doubt that your son will do great things over the course of his lifetime. He’s lucky to have you as a mom!!

    • Michelle McGee December 2, 2009, 8:40 pm

      Thanks Beth. I think I’m the lucky one, though. Jacob has taught me so much. I often tell him thanks for picking me to be your mother. It’s been a difficult journey at times but I’ve learned so much about the human spirit through Jacob. Thanks for reading the post.
      Believe,
      Michelle

  • Daisy December 2, 2009, 8:49 pm

    Acceptance is huge. I stay away from the word tolerance; acceptance is truly the goal. My son has tics that wax and wane over several years’ time. His anti-anxiety meds help control them in a small way. The tics are small, though; his Asperger’s is the biggest barrier to acceptance, even more so than his blindness.

  • Michelle McGee December 2, 2009, 10:14 pm

    I agree there is a difference between acceptance and tolerance. Tolerance to me implies that there is still a problem with whatever it is being tolerated – you’re just trying to get through it. Acceptance is just pure willingness to say, “It’s all good!” My son is also on anxiety meds for his OCD/anxiety. In the big picture his tics are the least of my worries. Teaching him how to handle his emotions has been my biggest challenge. He feels things in a BIG way.
    I have several friends whose kids have Aspergers so I know how challenging that must be. My heart goes out to you on your journey with your son. Stay strong and always believe,
    Michelle

  • andrea frazer December 9, 2009, 11:52 pm

    I am officially nominating Jacob to be Dominic’s big brother. And you, Michelle, can be my big sister. Except you look younger than me. But whatever. LOVELY POST AS USUAL YOU ROCKSTAR!!!!!!!!!!!!!!!!!!

  • L. Nichols October 20, 2012, 4:50 pm

    It’s amazing that I came across this story. My son Jacob was diagnosed with TS a year ago. I am currently in a college level inquiry class and I chose TS as my topic so that I can educate myself along with others. The point of my paper is not to just discuss the physical aspect of TS, but more importantly the emotional toll it has on the individual and their families. Can children with TS grow up to not only live with havng TS, but also accept it and allow yourself to be defined by who they are and not by TS? I want to know what goes on inside the minds of those with TS. I’m doing my research and I came across this article and I just thought “Wow, this sounds so much like my Jacob.” I wish your Jacob the best. It’s been 3 years since anyone last posted, as far as I can see, so I imagine a lot has changed. I would love to hear your story and others. I have started a FB campaign for my son, https://www.facebook.com/#!/proudtostandout, so that he be inspired by others stories. If you see this and have FB please stop by and feel free to share your story.