The Last Day of School

Today is day 9 of Tourette Syndrome Awareness Month.  It also happens to be the last day of school for Monster Man, his siblings, and their classmates.  What does this mean for kids with TS?  As with any other kid, it means an incredible amount of excitement.  However, excitement (just like stress) can lead to an overabundance of tics.

The truth is, tics tend to increase in both number and severity during periods of high stress or excitement.  It's almost as if the ticcer's body doesn't know how to handle the extra stimuli, and thus goes into overdrive.  In Monster Man's case, he's been doing this half shoulder-shrug/half head-shake thing, which he only does during high excitement or high stress periods, and he's been doing this multiple times a minute.  Sometimes, he doesn't even notice he's doing it.  Other times, he's annoyed because he feels like he can't stop doing it.

Sadly, the high levels of stress and excitement can also lead to increased problems with other issues, like irritability that can lead to a rage episode.  When just the right trigger comes along, he can become like a stick of dynamite, exploding when the lit fuse finally reaches the stick.  As if he's suddenly been triggered, he just explodes, losing control of his emotions.

He was put to the test just a couple of days ago at school.  His teachers have all recently told me that they've never seen his lose his temper or get anywhere close to a rage episode, but they apparently spoke too soon.  With all the excitement of the end-of-the-year activities, he's been building up all the extra emotion inside him.  During field day, a classmate poured water over him, and he immediately responded by putting the kid in a headlock.  Thankfully the episode didn't go past there, as it very easily could have.  The teachers could have seen much worse had he not been able to regain his self-control as fast as he did.

It concerns me greatly to know that he did start to lose his temper at school, that a trigger set him off outside his usual comfort zone at home.  This only proves to me even more that I am doing the right thing in taking him back to the neurologist next month to see about getting him on a medication that can help him better control some of the issues he has.

Comorbid Conditions & Tourette Syndrome

Today is day 8 of Tourette Syndrome Awareness Month, which (as I've stated in a previous post) runs from May 15 to June 15.  I want to take the opportunity today to share a little about comorbid conditions.  I've used the term many times in the past, yet I've still received a lot of question about the term "comorbid".  It seems that what throws most people off is the word "morbid", which is most commonly thought of as "gruesome" or "unwholesomely gloomy".  Dictionary.com gives four definitions for the word "morbid", including the two more common definitions I just mentioned.  However, it can also mean "affected by, caused by, causting, or characteristic of disease" or "pertaining to diseased parts".  In the case of co-morbid conditions, it would be more the "affected by,..." definition.

Comorbid condition of Tourette Syndrome can include Obsessive Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD), bipolar, depression, anxiety, and rage. They can also include learning disorders, such as dyslexia and dysgraphia.  In many cases, these comorbid conditions are actually harder on the individual with TS than the actual tics are.

It is important to remember that these can appear together but do not always.  Some people may have one or two comorbids with their TS, some may have none, some may have many.  Like the difference in tics, it seems that you can have a room full of ticcers and not see a completely matching list of comorbids between two individuals.  It is also important to realize that just because a child exhibits one of the comorbids, it doesn't mean that the child has Tourette Syndrome.  A child with ADHD could just have ADHD.  A child with OCD could just have OCD.  These are all conditions that can occur on their own or along with other conditions.

Tourettes in the Classroom

I missed my post for day 7 of Tourette Syndrome Awareness Month, so I decided I'd do a quick one this morning to make up for it.  This past school year has been filled with struggles for Monster Man at school.  Through it all, though, he's managed to maintain his grades to mostly A's and B's (one very high C).  It hasn't been easy, and he's faced many challenges along the way, but that's how it tends to be for students with Tourette Syndrome.

Tourette Syndrome can be hard enough to live with at home, let alone to be in a classroom setting, with students that can see (and possibly make fun of) the tics, teachers who think the student is being disruptive, and the added stress of trying to keep up with the lessons while controlling the urge to tic.  So many co-morbid issues add to these problems, as well, such as ADHD and disgraphia.  The classroom setting can be very stressful indeed for students with Tourette Syndrome.

The Tourette Syndrome Association offers many resources to help educators understand and prepare for students with Tourette Syndrome.  As parents, it can help make our children's classroom lives easier if we provide their teachers with some of these materials.  It would also be helpful for schools to keep some of these materials (many of which can be found for free or at a very low cost) on hand to prepare not only for current students with TS, but for any new students that might come along or anyone that might get diagnosed.  Being prepared can make the classroom life so much easier for everyone involved.

Driving with Tourettes

Today is day 6 of Tourette Syndrome Awareness Month.  Since the weekend was incredibly busy for me, I figured I'd stick with a smaller post for today.  I was thinking about a question that someone recently asked me, and I thought I'd answer her question here in case anyone else has asked that same question.  "Can someone with Tourette Syndrome drive?"

In most cases, the answer to that question is yes.  Tourette Syndrome in itself is not a cause for someone being unable to drive.  There really isn't much reason as to why someone with TS couldn't drive, unless there are other medical issues that are co-existing along with the TS, or unless the tics make it too hard to concentrate on the road or drive safely.  In fact, I've talked to several people that have said the concentration it takes to drive is a good distraction from the tics, giving the ticcer a break from their usual tics.  One person I talked to said that they wouldn't tic while driving, but would have to release their tics (in this person's case, severe head shaking) at every red light and stop sign.  As soon as he was able to drive again, the tics would be controlled until the next chance to stop.

Not only can people with Tourette Syndrome drive a car, but they can also race a car.  I've mentioned before about the racing record that was accomplished by Trey Shannon for TS Awareness.  I may also have mentioned that NASCAR drivers Kenny Wallace and Steve Wallace both have Tourette Syndrome.  They offer hope to ticcers like Monster Man who have dreams of one day racing a car themselves.

Camp Twin Lakes

I thought I'd post something a little different for day 5 of Tourette Syndrome Awareness Month.  I've mentioned in previous posts about Camp Twitch and Shout, the wonderful camp that Monster Man attended last summer, and that we attended as a family in the fall.  Camp Twitch and Shout is a week-long summer camp for children ages 7 to 17 that have Tourette Syndrome.  For that week, the kids are free to tic to their heart's desire.  There is no one staring at them while they twitch, no one feeling disrupted by their need to shout.  It's a special place where they can feel 100% 'normal'.  In the fall, families come together for a weekend filled with camp activities, a little bit of education for the parents, and (most importantly to us) the chance to connect with other families that know what we experience daily.

Camp Twitch and Shout is one of several wonderful camps offered through Camp Twin Lakes.  Camp Twin Lakes holds several different camps for children living with disabilities, life threatening diseases, or other challenges.  There are camps for children with Tourette Syndrome, diabetes, weight management issues, Autism spectrum disorders, developmental or intellectual disabilities, burn injuries, asthma, sickle cell disease, spina bifida, cancer, celiac disease, muscular dystrophy, juvenile arthritis, hearing impairment, brain injuries, bleeding disorders, epilepsy, amputations, and so many other situations, including some camps for children living with family members going through some of these situations.  All of these camps offer their campers a chance to connect, a chance to feel like they are truly accepted, a chance to feel like they belong.

Camp Twin Lakes is one of five organizations in the running today for a chance to win a Toyota vehicle.  Each day for 100 days, Toyota is giving away a vehicle to an organization that is trying to make a difference.  Camp Twin Lakes could really use the Toyota Tundra.  Among the many ways that the camp could benefit from having this vehicle is their newest program, Camp-To-Go, which allows Camp Twin Lakes to have camp activities in children's hospitals around Georgia.  It's such a great opportunity for children who can't make it to a camp location due to their medical needs.

Please take a few moments today to check out the Toyota 100 Cars for Good page on Facebook.  While you're there, please put in your vote to help Camp Twin Lakes be today's winner.  Voting begins at 10am Eastern time, and runs until 11:59pm.

Not a spiritual thing

I have seen and heard many comments - on websites, in emails, and out in public - about Tourette Syndrome being a spiritual thing.  Some of those that are not informed think that people with Tourette Syndrome are vulnerable in their spiritual connections with God.  They either aren't strong enough to stand up against the demonic forces that are causing them to tic, have a spiritual battle going on in them, are possessed by the devil, or even worship Satan.  Yes, those are all comments that I have seen or heard.  So, for day 4 of Tourette Syndrome Awareness Month, I want to take the time to address these comments.

In researching information about Tourette Syndrome online, I ran across a forum where people were discussing those who struggle daily with TS.  In this forum, I saw some of the comments I mentioned above.  I also saw comments that stated that people with Tourette Syndrome should not be allowed to date, let alone marry and procreate.  In fact, I saw one comment that referred to children of parents with TS as being the spawn of Satan.  How sad to think that this whole group of people is so uninformed!

I saw one person, in an email, back up his comment of Tourettes being a 'spiritual thing' by stating that people with Tourette Syndrome use obscene words or gestures.  As I've mentioned previously, coprolalia (the use of such obscenities) only occurs in somewhere around 10% of all cases of Tourette Syndrome.

The truth is, Tourette Syndrome is not a spiritual thing at all.  Instead, it is a neurological disorder.  It is not caused by demons, but instead by brain impulses.  It can, in many cases, be hereditary, though this isn't always the case.  Some theories on cause (since no cause is known) show that brain abnormalities, caused by chemicals in the brain such as dopamine and serotonin.

If you hear or see someone make a comment about the spiritual well-being of a person living with Tourette Syndrome, please take the time to explain to them the truth.  Tourette Syndrome is NOT a spiritual thing, and it can be very hurtful to those who suffer from it to hear it even suggested.

Let's Talk About Tics

Today is day 3 of Tourette Syndrome Awareness Month, and I thought I'd take the opportunity to educate those who might be confused about what tics are, and about how they differ among those who have Tourette Syndrome.

Tics are repetitive, involuntary body movements, and they can be physical or audible.  Some tics can be quite simple, such as eye-blinking or sniffing.  Some are more complex, such as when Monster Man looks upward at the outer sides of his face (opposite directions and up at the same time) while making a really wide smile.  Blinking, snapping, chewing, etc are all examples of motor tics.  Verbal tics can include such things as throat clearing, barking, and shouting.

Some verbal tics can include coprolalia, echolalia, and palilalia.  Coprolalia refers to the desire to curse or say derogatory words or phrases.  Echolalia refers to repeating what others say (kind of similar to the copycat games that kids like to play, mimicking each other, but instead is involuntary).  Palilalia is the repetition of  one's own words or group of words.  This can be similar to a stutter.  In Monster Man's case, he occasionally will repeat a few words in his sentences ("I want to go to to go to the ball fields tonight").  It happens so quickly that he often doesn't even realize that he's repeated himself, and it can go unnoticed on occasion by those around him (thankfully, since a stutter is often made fun of by kids his age).

Tics have a tendency to wax and wan.  They can come on for a very short period of time, then disappear for a while before returning.  Sometimes they come, stay a while, and then disappear completely.  Very rarely do tics come on and never go away.

Tics differ greatly between those with Tourette Syndrome.  You might fill a room full of people with TS, only to find that no two are having the same tics.  While two people might have matches in their lists of tics, they may not exhibit the same tics at the same time.  And for every match that is on their lists, they have many more that do not match up.  The lists of tics can be just as different as the individuals who have the tics.

Statistics that Raise Questions

In looking up some information this morning to share for Tourette Syndrome Awareness Month, I ran across some statistics on a Neuroscience For Kids page.  The site states that between 100,000 and 200,000 Americans have Tourette Syndrome, a number that I was well aware of (in actuality, the number is estimated to be closer to 200,000).  It then went on to say that "About 1 million Americans may have very mild symptoms of TS."  In 2011, the population of the United States reached over 311 million.  When you look at 1 million, it seems like a small portion of the US, seeing how large the population of the US is.  However, when you think of it in the terms of 1 out of about every 311 people, it makes you really stop to think.

Tourette Syndrome is much more common than most people realize.  On the average day, we can easily encounter 300+ people.  Work, school, running errands... Everywhere we go, we are surrounded by others, most of which we don't even know.  When you think about all the people that enter our lives, even if only for a split second in passing, you realize that there is a possibility that at least 1 of those individuals that crosses your path has Tourette Syndrome or symptoms of Tourette Syndrome.

If the numbers are that high, why is it that there is very little awareness about what Tourette Syndrome really is?  There is so much awareness out there for other medical conditions - Autism, Down Syndrome, Cerebral Palsy, Epilepsy, etc - that we don't even really stop to think anything is out of the ordinary anymore when we come face-to-face with someone affected by these conditions.  So why is it that when people see or hear someone ticcing in public, they stop and stare?  Why isn't there more awareness that there are medical reasons for these behaviors, that kids aren't just being unruly?

Tourette Syndrome isn't completely ignored by the media.  Sure, there are portrayals of people living with TS on movies and TV shows. Sadly, though, the majority of these portrayals only show people who have coprolalia (the use of obscenities).  The truth is that only 10%-15% (statistics vary depending on source) of people with Tourette Syndrome exhibit signs on coprolalia.  The media, for the most part, fails to portray what life with Tourettes is really like.  Until more accurate accounts are shown, TS awareness is going to be skewed.

A Little Challenge

Today marks the beginning of Tourette Syndrome Awareness Month, which runs from May 15 to June 15 each year.  To start the month off, I'd like to issue a little challenge to those of you who do not have Tourette Syndrome.  This is a chance to for you to get a little bit of a better understanding of what life is like for those, like Monster Man, who live with the constant tics that play such a big part in life with Tourette Syndrome.

Think of the things that we do involuntarily - breathing, blinking... even yawning. Now, I want you to concentrate really hard on holding your breath and keeping your eyes open.  Do not blink.  Do not take a breath.  Do not yawn.  No matter what, until I tell you to do otherwise, I want you to try hard to control these movements.

It's hard to do, isn't it?  Now imagine that you have people fussing at you.  "Stop blinking!"  "Why can't you just control yourself?"  "I said stop that this instant!"  "If I see you blink one more time..."  Can you imagine what it is like to have those around you fussing at you, even punishing you, for doing the things that you must do?

This is what life is like for those with Tourette Syndrome.  Their tics come just as involuntarily as breathing, blinking, and yawning come for the rest of us.  They struggle to control the need to clear their throat, shake their head, bark, etc.  Sometimes, those that don't understand will tell them to stop, punish them for being 'disruptive', and ridicule them for their 'lack of control'.

Okay, now I want you to quit holding your breath.  You can blink, too, if you need to.  You're probably breathing heavier than usual now, trying to take in extra air.  You may be blinking excessively, too, making up for the lack of blinking you did while you were controlling your movements.  For those that manage to control their tics - at school, at work, in public - the release is usually similar.  Once they can finally let go and tic, all those extra bottled up tics usually want to come out with a vengeance.

Please keep this in mind next time you see or hear someone doing something you might view as strange or unruly.  They may not just be acting up.  They might not just be trying to get attention.  They might, in all actuality, be struggling to control these behaviors that come to them as involuntarily as breathing and blinking.

I thought I'd shared this already

I thought that I'd shared this already, but just found this shown in my saved drafts.  If this is a repeat, I apologize for the double post!


I originally wrote this article for the Tourette Syndrome Association Georgia Chapter's monthly newsletter a few months back.  I've made a few changes, but it's mostly written as it was in the newsletter.  This is the follow-up to my previous post, which was also written originally for the newsletter. I will share more of the articles in the near future.

                Monster Man was always so different from our other two kids, as well as from all my friends’ kids.  When he was five weeks old, I woke up to find him blue.  He’d developed what turned out to be the first of a series of respiratory infections.  By the time that he was 18 months old, he’d spent a total of 15 months sick, with only a few good days in between the many bad ones.  

                Perhaps because of his lack of energy, he didn’t really hit his terrible twos like most kids do.  He would have a few temper tantrums here and there, and he’d have his naughty moments, but his bad moments were few and far between.  He spent so much time sick that he rarely had any energy, so we would rejoice at the moments when he would get into the usual toddler mischief, climbing on things, getting into things, and fighting with his big sister over favorite toys.  The only times that really stuck out in our minds were the times when he’d get extremely upset and would gain a significant amount of strength – times when he’d flip the end tables, lamps and all, because something wasn’t going his way; when he had to have stitches and it took five adults to hold him down while the doctor stitched; when I wrestled with him in a parking lot for over 45 minutes, holding him tight to keep him from running in front of a car.  Those bad moments didn’t happen often, but when he did have his moments he took them to the extreme.   We didn’t realize at the time that he was having rage episodes, instead passing off the temper and the strength as being a combination of a temper tantrum and the steroids he was on to strengthen his weakened lungs.

                For every bad moment, there have been at least a hundred more good moments, especially once Monster Man started feeling better and his lungs began strengthening.  That was when his personality really started to blossom.  The boy has been full of character from that moment on!  He always keeps us rolling with laughter at his crazy antics, many which start with his incredible imagination.  From the time he was about three years old until well after his fifth birthday, he believed that he was Santa Claus.  He truly believed that he was the future Santa, “training” daily for the nights he would spend delivering presents.  For two years, he walked around wearing a Santa hat (yes, even during the summer), which was often paired with a red sweat suit his Grammy had added white fur to.  When he told me one year that all he wanted for Christmas was a sleigh and eight reindeer that could really fly, I was left looking for a present that wouldn’t disappoint him. 

                In the months preceding Monster Man’s diagnosis, I joined the National Tourette Syndrome Association Facebook page.  It was there that I discovered that so many people with Tourette Syndrome exceed in some type of art.  Some are writers, some are singers, some are dancers, some are painters or sculptors, some are photographers, and some work in art in ways I never thought of before.  Just about all use their art as a form of therapy.  I guess this would be where Monster Man’s overactive imagination comes in handy, especially when he’s drawing…