Five Things Friday – Misconceptions about Tourette Syndrome

I have had several conversations with people who make false assumptions about my son based on the information that the media provides about Tourette’s.  It angers me that many of the media sources who do stories on TS or make reference to TS do so in a very sensationalized manner, leaving the general public to assume that TS is a cursing disease and is punchline fodder.

With megaphone in hand I am telling anyone who will listen what TS is, and more importantly what it isn’t. That said, here are five of the most common misconceptions that I have seen with regards to Tourette Syndrome.

Misconception 1:  TS is a swearing disease.  The images that we see on TV are inaccurate.  Less than 10% of patients with TS have coprolalia – a condition that causes them to use obscene language.

Misconception 2:  TS patients make funny sounds and move in odd ways – that’s it.  Unfortunately, a diagnosis of TS usually doesn’t come alone.  TS is notorious for bringing a few friends along for the ride.  OCD, ADD, ADHD are some of the co-morbid conditions often associated with Tourettes.

Misconception 3:  TS is very rare.  Many cases of Tourette’s are not correctly identified or are so mild they go undiagnosed.  However, according to statistics between 1 and 10 children per 1000 have Tourette’s and as many as 10 per 1000 people have some form of a tic disorder.

Misconception 4:  TS patients are debilitated by their condition and cannot lead productive lives.  Many people, when I tell them that my son has TS, ask if he is able to go to school with “normal” kids.  After I take a deep breath I assure them that my son is just as “normal” as any other kid (whatever that means) and that yes, he can hang out with the regular crowd.  TS does not prevent him from doing anything.  And while some cases are more severe than others, and can affect one’s life adversely, most people with TS lead very active, productive lives.

Misconception 5:  People with TS can control their tics if they really want to.  Try this:  Hold your breath as long as you can.  Can you hold it for 30 seconds?  A minute?  Longer?  Maybe, but at some point you will need to breathe.  And if you’ve held it for a long time, you will find yourself gasping for air.  TS patients can suppress tics for short periods, but it’s very uncomfortable (so I’m told by my son) and usually results in an explosion of tics.  Telling someone to stop ticcing is like telling someone to stop breathing or blinking.  It’s possible, but not for long.

May 15 – June 15 is National Tourette’s Awareness Month.  Take a minute to visit this link and educate yourself on TS. Then pass this on to someone else. Let’s start a chain of awareness so that kids like Jacob can be understood and accepted.

Also be sure to visit my Tic Dock page to read more about TS and how it has affected my life.

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Special Post about Tourette Syndrome

Please watch this video about kids with Tourette Syndrome. It’s what my son deals with on a daily basis. Teach tolerance and acceptance. And above all else educate others. If you know someone who does not understand what Tourette Syndrome is please forward this video.

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Five Things Friday – Great things about Jacob’s Tourette Syndrome

Jacob the Human Beatbox

Jacob’s tics have been pretty high lately.  In an effort to alleviate some of the internal tension that these bouts often cause me, I thought I’d create a list of good things about Tourette’s.  I could focus on the negative impact that TS has on Jacob’s life, but that doesn’t accomplish anything – it just perpetuates that negativity. Understand that I am in no way poking fun at Jacob’s TS, it’s a very real, very serious thing to me, but I do think sometimes you just have to lighten up to get through the tough times.

1.   Human Beatbox – On his high tic days Jacob could very easily give Bobby McFerrin a run for his money.  TS coupled with OCD tendencies gives Jacob a rhythm all his own – no music required.

2.   Why be normal? – I don’t know if any of you remember that bumper sticker from way back when. I’m sure they sell it still.  Warner had it on his car, upside down, a true testament to individuality.  I’ve always embraced those things about me that are the real me.  The things that make me different.  The fact that I love bats.  That I prefer melancholic songs.  Things that make others say that’s just how she rolls.

Having Tourette’s is a guaranteed ticket to never being “normal” whatever that is.  I’ve always told Jacob that being different is a good thing.  How boring would it be if everyone was the same?  Make yourself known.  Stand out in a crowd.  And honestly, it’s one of the things I love about Jacob.  It’s not the only thing that makes him stand out, for sure.  But it is something that will always set him apart.  That won’t always be a comfortable thing for him, and TS certainly does not define him, but it is a part of him.  It’s just how he rolls.

3.   A free pass – Jacob has never used his Tourette’s as an excuse…at least not that I’m aware of.  But one thing’s for sure, I can never get mad at him for being loud.  He can always trump me with but I can’t help it, it’s a tic.

4.   He’s blessed – One of Jacob’s tics is a sneezing tic.  As a result of this Jacob is probably one of the most blessed kids I know.  Several times a day he hears, God bless you.  How nice to be the recipient of so many well wishes.

5.   I can never lose him – When I am in a store and Jacob has gone off on his own to explore whatever it is that 12 year old boys explore, I never have to worry about not being able to find him.  He usually has his phone with him so I can just call him.  But on the occasions when he has forgotten his phone, or won’t answer it, all I have to do is follow the sound of Jacob’s tics.  It’s sort of like a land lubber’s version of Marco Polo.

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Moxie talks about Tourette’s and how it has affected the family

The sound and video are off on the clip so you might just want to listen to it and not watch it. Just sayin’.

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Moxie talks about Jacob’s Tourette’s

This was part of an interview that we did for a possible documentary that never came to be. Jacob is the one behind the camera, so you can hear him ticcing on and off. There’s also a great deal of wind noise.

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He’s Not Broken

Me and my inspiration

Hello everyone. My name is Michelle and I’m addicted to trying to fix my son.

It’s been nearly 6 years since my son’s diagnosis with Tourette’s Syndrome. Five of those years I spent moving through a series of emotions that I now realize are very much like the 12 step program that groups like AA rely on. I realize now that I had an addiction that took me years to overcome.

Even before Jacob was diagnosed with TS, thanks to the powerful and sometimes destructive voice of the internet, I knew. I knew that Jacob was behaving in a way that fit the criteria for Tourette’s. I knew but I wouldn’t let myself believe it. I figured if I believed it then I was sealing his fate and condemning him to a life of never fitting in and being bullied, a life plagued with low self-esteem. I spent hours online searching and searching for something that would justify my denial. I was exhausted emotionally and mentally from spending so much energy on fixing Jacob.

When Jacob was diagnosed I went into immediate panic mode. Did I give this to him? Was it my fault?  What did I do wrong?  I hated myself for the future I had given him. With this thoughts reeling through my mind, I began to slowly disappear into my son’s TS, and it consumed my every waking, and sometimes sleeping, moment.  I searched for answers, cures, solutions – anything to take this away from him.  Anything to fix him.

We tried vitamin therapy and behavior management.  But nothing changed. Jacob still made funny noises. He still moved his body in odd ways. He still fit the criteria for Tourettes.

I became furious.  Furious at myself.  Furious at God.  Furious at parents who had kids who didn’t have Tourette’s. My anxiety fed Jacob’s anxiety and many days were spent in a very dark place within myself.  My anger and resentment were stealing my life with my son.  I was mad at the world and yet, still my son ticced.

I spent many nights bargaining with God.  If you take this away I will take whatever you give me.  Make me tic.  Make me suffer, but not my son.  I’d wake up hopeful, until I heard the snorting and I would crumble inside.  Another bargain denied. I begged for a miracle, and yet still my son ticced.

I began to withdraw from life.  I was so sad for my son.  But I was also sad for me, for what I had lost.  I had the child I always dreamed of, but he wasn’t the child I had expected.  And now, I lamented the son I would never have.  This made me even more depressed because certainly I was an awful mother for feeling like this.  I didn’t love my son any less at all, I just wasn’t prepared for this particular child.  I cried all the time.  And yet still my son ticced.

Then something started to happen.  I began to meet other people with similar kids.  I also met adults, successful adults with Tourette’s.  I began to accept things as they were and trust that this was the life I was meant to have.  I could continue to live in misery and defeat, or I could embrace this and make a difference.  I started really looking at Jacob and I noticed the darnedest thing.  His Tourette’s didn’t bother him.  It didn’t stop him from being a “normal” kid.  So why did it bother me?  Once I started paying attention to how life really was for Jacob and not how I perceived it to be, once I started accepting things the way they really were, my life changed and so did I.

I finally realized something that took me 5 years to learn – my son is not broken.

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Jacob’s Tourette’s Interview – Part 3 of 3 2009

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Jacob Tourette’s Interview – Part 2 2009

Here is part 2 of 3 of the TS interview with Jacob. Please plan on watching “Front of the Class” on CBS February 6th – based on the true story written by Brad Cohen who, after being challenged by Tourette’s syndrome from a very young age, defies all odds to become a gifted teacher. Brad reminds us all that dreams can come true! He reminds me of Jacob.

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Jacob Tourette’s Interview – Part 1 2009

Here is part 1 of an interview Jacob did at the request of a producer looking for participants on a show about Tourette’s. They saw our first interview on our local station and called to see if we might be interested in “auditioning”. We didn’t get the call back, but we did get these wonderful interviews. So, here’s my son, my heart, my Jacob.

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Here’s to an enlightening 2010!

Happy 2010!

I’m not one really for resolutions because it puts too much pressure on me and I always seem to disappoint myself.  And the word resolve makes me think of the carpet cleaner that has never done much for removing stains from my spotted rugs.  So resolve makes me think of stains, which is not something that I want to associate with my life in any way.

Instead, I have decided to embark on a new, more positive, more enlightened 2010.  I do have ideas (not resolutions) about how I hope to reach my enlightenment.

1.  I want to learn to speak my words as well as I write them.  I tend to find myself choosing not to voice an opinion or share my thoughts because they never seem to come across the way I hear them in my head and I feel misunderstood.

2.  I want to pay more attention.  I tend to get so caught up in the stresses of everyday life that I miss out on the blink moments.  I need to remind myself often that the stresses will always be there in one form or another, but there are certain moments in my life that I will never be given the chance to experience again.  I don’t want to miss those.

3.  I want to have quiet moments.  I’m not really talking about quiet moments in my house, but quiet moments in my mind.  If Jacob got his OCD from someone, I’m sure it was me.  I have a hard time shutting down my brain and I tend to fixate on these mental loops.  It’s really bad in the evenings when I crave the quiet.  So, in an effort to help myself get to that point one day, I am going to make time to meditate on a regular basis until the quiet becomes something I can bring upon myself at will.

I have other things I hope to accomplish this year, but those are my 3 biggies.  I feel like if I can focus on those 3 the other things will fall into place naturally.  I need this to be a year of inner focus for me.  I need to remember who I have always been beneath the busyness that is life.

I’d love to hear how you plan to make 2010 your best year yet.

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