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. 

A mixture of emotions

The past couple of weeks have been pretty tough.  Monster Man is alternating between episodes of rage and episodes of extreme clingy-ness.  One minute, he's in full rage mode, yelling and throwing things over what seems to us as no big deal (like asking him to clean his room, help unload the dishwasher, or even brush his teeth).  The next minute, he's practically attached to my hip, begging for forgiveness for having been in an episode of rage previously.  No matter how many times I tell him that it's okay, that I understand he is having a hard time controlling his emotions, he still apologizes.  And then he apologizes for apologizing.  And sometimes he apologizes for apologizing for apologizing...

I'm beginning to think that he's living in a constant fear of hurting someone's feelings.  While he's having an episode, he tells us how much he hates us and how much he thinks we hate him.  He says things that he doesn't mean to say, throws things at us, even occasionally tries to hit us.  He also tries hurting himself, smacking himself in the face most of the time, but he tried to slam an aluminum pot into his foot the other day and a few days prior had tried to jump over the railing to the stairs.  It's so hard seeing him struggling like that and knowing that there is very little that I can do to make it all better with the exception of reassuring him and continuing to show him how much I love him.

The medicine that I've been giving him continues to help with the rage, though I'm trying to limit when I give it to him so that he doesn't build a resistance to it.  I try to give it to him only before softball games or other times when I know he lets himself get worked up, or at times when he's already starting to show signs that his emotions are getting out of control and we have to go somewhere.  If we're staying home, I try to just let him work through the emotions.  If we don't have to be somewhere, then we stay home when he's having a bad day.  It's hard on Angel Baby and Little Man to know that we are choosing to cancel outings that aren't needed when he's at his worst, but I can't take the risk of taking him out somewhere (especially when it is just me and the kids) and trying to keep him under control while keeping an eye on the other two as well.  We're getting through this bit-by-bit, and I'm hopeful that we'll still be able to do a lot of the fun things we do together each summer.

In the midst of all of this, my husband and I are starting to worry that Little Man might be following in his brother's footsteps.  While Little Man does not have any noticeable tics just yet, he has always had a bit of an OCD side to him (he has to have certain things placed in the perfect position or he'll do what he has to do to get it right).  He doesn't have anxiety issues, but he is most definitely starting to show signs of having some rage issues.  My husband and I see the changes in Little Man's temper and often question whether it is just a stage or if it is signs of things to come.  I guess only time will tell.

Why Anti-Histamines Work

I have been doing a little research into why the anti-histamine that Monster Man is on has been helping so much with his rage.  Someone on the TSA Facebook page had recently mentioned that her doctor said there was a histamine-connection to Tourette Syndrome.  I am posting links to some articles on the subject that help to explain this connection.  To me, it offers more explanation as to why an anti-histamine has been so successful at controlling Monster Man's rage and bringing down the number of episodes he's been having at times when they'd otherwise be at their worst.

Potential Role for Histamine Identified in Tourette's Syndrome

Abnormalities in Brain Histamine may be Key Factor in Tourette Syndrome

A Surprising Clue to Tourette Syndrome

More control

We had another softball game on Saturday morning.  The past few weeks at softball, as I've mentioned, had been filled with on-again/off-again episodes of rage.  One of the big things we were dealing with as a result of the rage was that Monster Man didn't want anyone touching his softball equipment, nor did he want to share his treasured spot on the pitcher's mound.  He skinned his knees up pretty badly early in the week last week and was still having problems walking as a result, so I'd been warning him for a few days that I was going to put him in the outfield so he didn't have to run as much.  At first, he was okay with it, but as game day rolled around he let me know that he was not happy at all with this arrangement, and he kept begging me to put him in the pitcher's circle.  He even went as far as refusing to get dressed Saturday morning until the very last possible second, when I threatened to take him in his pajamas (I've mentioned before that I am coaching, so I have to be at the fields).  He was NOT playing if he couldn't be pitcher.

Once at the fields, he sat in a chair and pouted while watching Angel Baby's game.  During that time, I decided to go ahead and give him another one of the anti-histamine pills that he'd had the previous weekend.  I knew we had seen improvements at the last game thanks to the medication, and I thought it was best to give it another try. By the time we had to head to the field where his game was taking place, he was perfectly happy with me telling him that 'we'll see' about putting him in the pitcher's circle later in the game.  He went into the outfield without a single complaint.

The biggest surprise of all came when he was in the batting circle, waiting for his turn to hit.  The little girl that batted before him is one that he has been fighting the most with, possibly because she is the one with an attitude closest to what he's had recently, and the two seem to play off each other with their attitudes sometimes.  She is the one person that he fights the hardest not to let her touch his softball equipment.  So imagine everyone's surprise when, as she was selecting a different bat, he said "Do you want to use my bat?" and handed it to her!  And he didn't throw a fit when I decided to keep him in the outfield for the entire game.  Everyone was commenting on the difference in him by the end of the game - the parents, the assistant coach, even the other players.

The anti-histamine that he's started using when he needs help controlling his rage has been an amazing help.  I am so relieved that I have found something to help him control himself when his emotions get the best of him.

A Little Control

After a rage-filled night at the ball park on Friday night, I was beginning to get a little desperate to help Monster Man find a way to control the rage.  Since I coach his team, I have to be at the ball fields for every game.  Since my hubby is working long hours, Monster Man has to be at the fields with me.  And since softball is one of the few things he looks forward to all week, Monster Man does not sit out at the games.  There is no leaving him home when he's had a bad day, no having him 'sit one out'.  I knew I had to find a way to help him have a calmer day at the ball park on Saturday.

I think I've mentioned before that the kids' current insurance will not cover anything for Tourette Syndrome.  I cannot get him the additional testing he needs for school, the therapy he needs to help him learn to control certain behaviors, or the medications he needs to help with the anxiety.  His pediatrician had previously prescribed something very mild that is similar to a stronger form of Benadryl.  In fact, Angel Baby has the same prescription for when she has allergic reactions.  In Monster Man's case, the medicine is supposed to be used to help mellow him out when his anxiety starts up.  We had never given it to him before because I'd never seemed to have it with me in cases when he ended up needing it, and I've had to talk him through controlling his breathing to help calm him down when I couldn't easily remove him from the situation.  I wasn't really sure how well the medication worked, but I decided that if it was supposed to help calm him down when the anxiety attacked, maybe it would help with the rage.

Before heading to the fields on Saturday morning, I gave him a dose of the medicine.  Within 30 minutes, he actually seemed happier than he had in days.  He was laughing and telling jokes with his sister, rather than yelling at her every time she even looked his direction (the way he had been for over a week).  When we first got to the fields, he wanted to love on me and kept giving me hugs rather than glaring at me and yelling over every little thing that didn't go his way.  During his game, he only had two minor setbacks, nothing compared to the experiences he'd had a week earlier.  He was able to calm down much quicker and to get back under control.  In fact, he told me that he felt more in control of his emotions than he had in a long time.

This particular medicine is not going to be a daily thing for him.  It is still going to just be used on days when he needs more help controlling his rage.  It now has a home in my purse, where I can easily find it and distribute it when he's starting to have a meltdown (hopefully before he goes in full rage mode).  It isn't a long-term solution, but I know it's there if we need it.  It's comforting to know that we have finally found something to help Monster Man for now.

His Worst Day Yet

Yesterday was Monster Man's worst TS day so far.  We were at the softball fields all day, as we had three games to play between the kids.  By the time I took him to the house of a friend that was watching him for part of the afternoon, he'd had three rough episodes of rage, and he'd developed two new tics.  His painful tic was back in full-force, which I think added to the rage he was experiencing.  While on the field for his game, I noticed he'd started a new head-shaking tic.  He was shaking his head, very similar to shaking it no, very hard.  He did this multiple times throughout the day.  On the way to our friend's house, he told me that he'd started a tooth-grinding tic, as well.  He was grinding his teeth in a way that wasn't noisy, but it was with enough force that it was painful.

He did pretty well at our friend's house, though all three tics continued to be a problem until he went to bed.  After we picked the kids up, we went back to the ball fields to watch the adults play and to let the kids play on the playground.  He had one more episode of rage during that time, and then another when we got home and it was time for the kids to go to bed.

By the time that bedtime came around last night, we were all ready for him to get to bed.  He needed to rest his brain and the rest of us needed to get away from the rage.  I also needed to get a chance to get away from seeing him struggle so much.  It's so hard to see him going through all of this.

Thankfully, today has been better than yesterday.  He's still having the same tics, but he hasn't had any problems with rage today at all.

Another Inspiring Artist

A couple of weeks ago, we were listening to our favorite radio station - 104.7 The Fish - out of Atlanta while we were driving to the ball fields.  We heard a new artist on the radio that my kids and I all truly enjoyed.  This young lady was the latest artist to be picked up on Toby Mac's record label, Gotee Records. My kids were especially excited to find out that this she was from Atlanta.  This new artist is 19-year-old Jamie-Grace.

My kids were excited to learn that someone that young could already be on the road to a successful singing career (something Angel Baby hopes to do one day), singing Christian music and sharing her gift with the world.  Two days after hearing the song 'Hold Me' for the first time, I found out something about Jamie-Grace that made her even more of an inspiration to our family.  Jamie-Grace has Tourette Syndrome.  Since her diagnosis at the age of 11, Jamie-Grace has been sharing her story and her faith with audiences around the United States.

Jamie-Grace joins the ranks of many others who have soared through the challenges of Tourette Syndrome, not allowing it to hold them back.  It is so important for those with TS to see others following their dreams and to realize that they can achieve their dreams if they just believe.

Please enjoy the video of Jamie-Grace's 'Hold Me'.