A Letter That Needs To Be Read

One of my Facebook friends that also has children with Tourette Syndrome shared a post this morning that I felt was so important that it not only needed to be shared on my Facebook page, but also needed to be shared here on my blog, as well.  This post was a letter written by Richard Paul Evans, author of the Michael Vey series of books.  That letter, titled 'To the woman at church who sent me an anonymous letter', was one that brought tears to my eyes.  (Please use the link in the letter title to view the letter itself.)

Richard Paul Evans had visited a church to share the Word with those within the church.  During his visit, his tics had been quite apparent.  One of the ladies within the church took those tics as being punishment from God for Mr. Evans' sins.  We are all sinners, which is why God sent His son into the world to die for our sins - to give us forgiveness for those sins.  He does not punish us for our sins by giving us tics or other neurological conditions.

The very idea that people still believe neurological conditions can be the result of our sins is one that angers me.  Putting this idea in the heads of those who suffer from tics, seizures, etc can be damaging in so many ways.  As if knowing they are different isn't hard enough on those with these conditions, they often times deal with bullying, staring, and countless questions.  Suggesting that they are being punished for their sins is even more damaging, Those that are more prone to believing this, rather than accepting the truth that it's caused by neurological disorders, will only suffer more from their desire to be more perfect in hopes that the tics will go away.

I think that Richard Paul Evans had the perfect response to this letter.  He, like me, hurts for all of those who could fall victim to these false accusations.  I can only hope and pray that his letter has found its way to the writer of the original anonymous letter, opening her heart to the truth about the author and others with neurological disorders.  In the mean time, I pray that it has also found its way to others with similar beliefs, helping them to gain better understanding of what Tourette Syndrome really is.

Tourette Syndrome Awareness Month

May 15 through June 15 is officially designated as Tourette Syndrome Awareness Month.  This is a month made to help bring awareness to others about an obstacle so many people around the world live with on a daily basis.  They are challenged with tics, many of which can make life hard to live with.  They face a life full of challenges that are both physical and emotional.  Their brains take control of their bodies, and they have little control over the actions their bodies are taking at the hands of their overly active brains.  Each day, those with Tourette Syndrome battle with their brains, fighting to take control over the desire to blink excessively, shake their heads, repeat words, and so much more.

The most common thing I've heard as a parent of a child with Tourette Syndrome is one simple question.  "He's not going to start cussing is he?"  (BTW- the proper term for the use of obscenities and slurs is coprolalia).  It sounds innocent enough, but it really shows just how misunderstood Tourette Syndrome is.  I recently encountered someone who suggested that Tourette Syndrome had a spiritual link because "it almost always is accompanied by swearing".  It made me realize just how wrong people often are in how they view this condition.  According to the Tourette Syndrome Association website, "cursing, uttering obscenities, and ethnic slurs are manifested by fewer than 15% of people with TS."  Somehow 15% doesn't sound like "almost always" to me.  And the truth is, the majority of those I've talked to that either have TS or have family members with TS are Christians with a strong sense of faith and a very good connection to God.  Tourette Syndrome affects people of all religions, just as it affects people of all races, genders, and even income levels.  Tourette Syndrome doesn't discriminate.  It doesn't select those who are less spiritual than others.


As I've mentioned, those with Tourette Syndrome are faced with a number of challenges.  Tourette Syndrome often coexists with disorders such as Obsessive Compulsive Disorder (OCD), anxiety, Attention Deficit Disorder (ADD), Attention Deficit Hyperactivity Disorder (ADHD), Sensory Processing Disorder (SPD), Sensory Integration Disorder (SID), insomnia, bipolar, depression, or any number of other behavioral, learning, or sleeping disorders.  As if these challenges are not enough, many people who live with Tourette Syndrome are faced with the reactions of those who do not understand the condition.  There are the countless stares, the snide remarks, and the bullies.  Sometimes, there are even those who deal with family members who, for lack of understanding or out of embarrassment, make nasty comments or even go to the point of emotional abuse rather than giving support, comfort, and love.  The home and the family should be a comfort zone for those with TS, but sadly this isn't always the case.


While there are those with Tourette Syndrome who would rather hide their condition from those around them, there are many more who long for acceptance and understanding.  Please take the time, during Tourette Syndrome Awareness Month and the rest of the year, to find out more about TS and the lives of those living with it.  Should you have any questions about Tourette Syndrome, please check out the links along the side of this blog or feel free to ask me any questions that I might be able to help you with. 

Trying to Reach a New Understanding

Tourette Syndrome is so often misunderstood.  When I first started telling family and friends that Monster Man most likely had Tourette Syndrome, the most common response I got was "He isn't going to start cussing is he?".  Sadly, this is one of the most misunderstood things about Tourette Syndrome.  The reality is that cussing, or coprolalia as it is officially called, is actually very rare.

Most people with Tourette Syndrome have similar tics to what Monster Man is experiencing - eye blinking, throat clearing, sniffing, and other similar movements.  Some are a little more complex, such as the times when Monster Man starts taking three steps and then kicking himself in the back of the leg.  There is such a variety of tics that are experienced, and they range in varying degrees.  Tourette Syndrome has many faces.

In recent weeks, there has been a little more awareness about Tourette Syndrome.  In fact, TS is making headlines thanks to American Idol finalist James Durbin.  James Durbin has both Tourette Syndrome and Asperger's (a form of autism).  His appearance on American Idol has been bringing about a new interest for many looking for find more information on both Tourette Syndrome and Asperger's.  James Durbin is helping Americans reach a new understanding.

I found a great news clip this morning from Atlanta's Fox 5 that talks more about James Durbin and gives a little more insight into life with TS.  Thank you to Fox 5 for helping spread the word!

Idol's James Durbin Struggles with Tourette Syndrome: MyFoxATLANTA.com

Protection from the outside world

There seems to me that there is no greater evil to someone with Tourette Syndrome than people who don't understand. This is especially true when those that don't understand are in your own family. I have been working hard to get my husband to understand what Monster Man is going through, but it isn't an easy task. I figured that he would be the one person who would be most likely to understand the challenges that Monster Man is faced with; after all, it's my hubby who has epilepsy and who has struggled with ADD. Instead, though, I listen to him fuss at Monster Man for the things that my sweet boy cannot control. Some of his tics can get frustrating, I'll admit, but it is heartbreaking to hear my son get fussed at for his tics, and it is even more heartbreaking to hear Monster Man's reaction. You can hear how upset he gets, and you can certainly see it on his face.

I want to take him under my protective wings and shield him from all harm, but I know that this will only make matters worse in the long run. I know that I must teach Monster Man how to stand up for himself, how to face those that are not understanding and to teach them rather than to run away.

I've had several people suggest that we watch Front of the Class, a Hallmark Special Presentation about a real life teacher with TS. I have tried to find this for rent, but have been unsuccessful. It has aired a few times in recent months, but we do not have cable to be able to watch it while it is on. I am planning to purchase my own copy soon so that I can use it not only to educate my family, but to also share with others who might want to know more about Tourette Syndrome.