You're at the grocery store and you notice a lady at the meat counter jerking her head to the side repeatedly. You're out to eat and hear the child at the table next to you grunting throughout much of the meal. While at the park, you hear someone yell 'fire' multiple times, despite the fact that there is no fire present. How do you respond? Do you stop and stare? Do you go to the people in question and ask if they are alright? Do you walk away, assuming bad parenting, drug use, or even just the desire for attention are to blame?
Believe it or not, these are all situations that I have encountered in public places - situations that I am lucky enough to understand rather than to have a reaction like those I mentioned above. For those of us blessed (yes, I did say blessed) enough to have experience with Tourette Syndrome, it's easy to understand that those situations are all examples of tics. Rather than bring attention to the tics or assuming the worst, we're able to sympathize with the ticcers, understanding that they are struggling with the need to perform these actions, no matter how badly they want to control them.
Tics can come in many forms, motor and vocal, simple and complex. The possibilities are endless. Below are a few examples of each type of tic. As you may notice, some tics can be unclear as to whether they are classified as simple or complex. Please remember that these are just examples, and that for each example listed, there are many more that are not listed. It is also important to remember that some children experience tics that show up for a short period of time and then disappear with no explanation, never to experience another tic again (in which case, wouldn't be indicative of a tic disorder such as Tourette Syndrome)
Simple Motor Tics - eye blinking, neck jerking, shoulder shrugging, facial grimaces
Complex Motor Tics - groaning behaviors, facial gestures, biting oneself, smelling things, stomping of feet, jumping
Simple Vocal Tics - throat clearing or coughing, grunting, sniffing, snorting, barking
Complex Vocal Tics - coprolalia (the use of inappropriate words, which is rather rare despite media portrayal of this being common with TS), palilalia (rapid repetition of a word or phrase), echolalia (repetition of words)
Showing posts with label Tourette Syndrome Awareness Month. Show all posts
Showing posts with label Tourette Syndrome Awareness Month. Show all posts
Friday, May 24, 2013
Wednesday, May 22, 2013
Some quick facts about Tourette Syndrome
I know I am a few days behind in my posts for Tourette Syndrome Awareness Month, but it is for good reason. I wanted to share quite a bit of information that I thought would be better in one big post, rather than broken into daily posts.
Tourette Syndrome is not the result of bad parenting. In fact, it is a neurological disorder which can be hereditary. Symptoms typically occur before the age of 18, and most commonly start appearing between the ages of 2 and 15. The most common characterization of Tourette Syndrome is the presence of tics, which are involuntary movements and/or vocalizations that repeatedly occur. There is usually the presence of multiple tics, both motor and vocal tics, though they do not necessarily happen at the same time. These can happen multiple times a day every day, or even coming and going over a course of time. In order for the Tourette diagnosis to be given, the presence of these tics have to have occurred for at least one year.
With Tourette Syndrome, tics tend to follow a wax and wane pattern, meaning that they may suddenly appear, stay for a short period of time (or a long period of time), and then disappear, usually to suddenly return again at a later time. They can also change in frequency and severity. New tics can appear to replace old tics. Tics can also increase in number and severity under certain circumstances, such as periods of high stress or exhaustion.
While tics tend to be involuntary, it is possible to control the tics for a period of time. For example, some students can hold the tics in during the day at school. However, when they reach their comfort zone (such as when they arrive at home), they must release the held back tics. This can often result in outbursts of tics, and can even result in changes in mood. Often times, holding in tics can also result in inability to concentrate.
It is important to remember that Tourette Syndrome is usually accompanied by a number of co-morbid disorders. We will get into those in a future post.
Tourette Syndrome is not the result of bad parenting. In fact, it is a neurological disorder which can be hereditary. Symptoms typically occur before the age of 18, and most commonly start appearing between the ages of 2 and 15. The most common characterization of Tourette Syndrome is the presence of tics, which are involuntary movements and/or vocalizations that repeatedly occur. There is usually the presence of multiple tics, both motor and vocal tics, though they do not necessarily happen at the same time. These can happen multiple times a day every day, or even coming and going over a course of time. In order for the Tourette diagnosis to be given, the presence of these tics have to have occurred for at least one year.
With Tourette Syndrome, tics tend to follow a wax and wane pattern, meaning that they may suddenly appear, stay for a short period of time (or a long period of time), and then disappear, usually to suddenly return again at a later time. They can also change in frequency and severity. New tics can appear to replace old tics. Tics can also increase in number and severity under certain circumstances, such as periods of high stress or exhaustion.
While tics tend to be involuntary, it is possible to control the tics for a period of time. For example, some students can hold the tics in during the day at school. However, when they reach their comfort zone (such as when they arrive at home), they must release the held back tics. This can often result in outbursts of tics, and can even result in changes in mood. Often times, holding in tics can also result in inability to concentrate.
It is important to remember that Tourette Syndrome is usually accompanied by a number of co-morbid disorders. We will get into those in a future post.
Thursday, May 16, 2013
Early signs of Tourette Syndrome
I often get asked how early on that I started seeing signs of Tourette Syndrome in Monster Man. I always knew that he was a little 'different', but didn't quite know what was making him different until he was older. Somewhere around the end of first, we do know that he started having some problems that we associated with allergies. For a long time, we didn't realize that they could be anything else other than allergies, which he'd struggled with since he was a toddler. For that reason, we're not really sure when the TS symptoms started and how many of his symptoms were TS related rather than allergy related.
It's with good reason that we so were so easily able to mistake signs of TS as being allergies. Tics of the eye are often among the first motor tics, and the most common one is eye blinking. Tics of the head and fact are often very common early motor tics. Early vocal tics often include throat clearing and sniffing. Monster Man had the eye blinking, throat clearing, and sniffing long before he had any other tics... all very common allergy symptoms.
There are also many complex motor tics that can be common closer to the onset of Tourettes symptoms. These can include touching, thrusting of the arms and legs, and jumping.
It's important to remember that no two cases of Tourette Syndrome are exactly the same. What can be early symptoms in some people may not show up at all in others. Two people may share one or two of the same tics, but have a much larger list of tics that they don't have in common. It's also important to realize that these early signs are just the most common, and that some people experience different tics than those listed early on.
It's with good reason that we so were so easily able to mistake signs of TS as being allergies. Tics of the eye are often among the first motor tics, and the most common one is eye blinking. Tics of the head and fact are often very common early motor tics. Early vocal tics often include throat clearing and sniffing. Monster Man had the eye blinking, throat clearing, and sniffing long before he had any other tics... all very common allergy symptoms.
There are also many complex motor tics that can be common closer to the onset of Tourettes symptoms. These can include touching, thrusting of the arms and legs, and jumping.
It's important to remember that no two cases of Tourette Syndrome are exactly the same. What can be early symptoms in some people may not show up at all in others. Two people may share one or two of the same tics, but have a much larger list of tics that they don't have in common. It's also important to realize that these early signs are just the most common, and that some people experience different tics than those listed early on.
Wednesday, May 15, 2013
It's That Time Again
It's that time of the year again. Today officially marks the start of Tourette Syndrome Awareness Month, which runs from May 15 to June 15. In the days to come, I will once again be sharing facts about Tourette Syndrome. Please feel free to share my posts to help spread awareness of what TS really is.
To start us off for the month, here is the first fact: Tourette Syndrome is not a swearing disease, as media often portrays it to be. It is a neurological disorder characterized by motor and vocal tics. Coprolalia (the swearing often associated with TS) occurs in only about 10% of those with Tourette Syndrome.
Tuesday, June 5, 2012
No one "at fault"
I am sorry that I haven't been able to keep up with the daily blog posts that I started out writing for Tourette Syndrome Awareness Month. Life has gotten in the way, as it tends to do sometimes. We've had trips to the pool, birthday parties, and softball tournaments filling up our days since school has gotten out, and there hasn't been much time for me to sit down and write. I did want to take a little time to write about something that has been weighing on my mind, though.
Tourette Syndrome can be a spontaneous thing, appearing out of nowhere in a patient that has no known family history of Tourette Syndrome. Sometimes, it can come on with strep infections, in which case it would likely be PANDAS. In many cases, however, there is a genetic link. Heredity does seem to play a role in many TS cases. However, this does not mean that anyone is "at fault" for their child having Tourette Syndrome.
Recently, a relative made a comment about which side of the family was "at fault" for Monster Man's TS. This came after another relative started showing signs of having TS, as well. The comment really grated on my nerves.
The truth is, no one is "at fault" for Tourette Syndrome. There is no one to blame, and there should be no one to blame. Sure, TS has its ups and downs; but doesn't most of life?! While it can take some adjusting to, and the comorbids can sometimes be hard to deal with, Tourette Syndrome can also be looked at as a gift. That's exactly how we choose to look at it.
Thanks to Monster Man's diagnosis, our eyes have been opened to so many things that we never would've known. We still would've fallen into that trap that the media wants us to believe, that TS is just the "cussing disease". We wouldn't have come to know that there is so much more to TS, that coprolalia only occurs in a small percentage of cases. We wouldn't have come to meet so many new families that are experiencing the same daily struggles (and triumphs) that we are experiencing, friends we've made online and through Camp Twitch and Shout. We wouldn't be challenged to work so hard to fight for acceptance for other children with tics even worse than Monster Man's.
Most importantly, though, is the fact that Monster Man wouldn't be the person that he is without his TS. He wouldn't be the 'quirky' little boy that we've watched grow up, always teaching us to think outside the box. He wouldn't be the little boy that taught us to answer every "Why does he do that?" with "Because he's Monster Man" when we had no explanation. He wouldn't be the boy that taught us that being so different can be so much more fun.
We are blessed to have Monster Man just the way he is, and he feels blessed to have been given the gift of TS to open his world up to a whole new group of people that he wouldn't have known otherwise. He has told us that he thinks that his highly vivid imagination comes from his brain working differently (something I've heard from other ticcers as well). We do not feel that there is someone to "blame"; but if there was, we'd like to thank him or her!
Tourette Syndrome can be a spontaneous thing, appearing out of nowhere in a patient that has no known family history of Tourette Syndrome. Sometimes, it can come on with strep infections, in which case it would likely be PANDAS. In many cases, however, there is a genetic link. Heredity does seem to play a role in many TS cases. However, this does not mean that anyone is "at fault" for their child having Tourette Syndrome.
Recently, a relative made a comment about which side of the family was "at fault" for Monster Man's TS. This came after another relative started showing signs of having TS, as well. The comment really grated on my nerves.
The truth is, no one is "at fault" for Tourette Syndrome. There is no one to blame, and there should be no one to blame. Sure, TS has its ups and downs; but doesn't most of life?! While it can take some adjusting to, and the comorbids can sometimes be hard to deal with, Tourette Syndrome can also be looked at as a gift. That's exactly how we choose to look at it.
Thanks to Monster Man's diagnosis, our eyes have been opened to so many things that we never would've known. We still would've fallen into that trap that the media wants us to believe, that TS is just the "cussing disease". We wouldn't have come to know that there is so much more to TS, that coprolalia only occurs in a small percentage of cases. We wouldn't have come to meet so many new families that are experiencing the same daily struggles (and triumphs) that we are experiencing, friends we've made online and through Camp Twitch and Shout. We wouldn't be challenged to work so hard to fight for acceptance for other children with tics even worse than Monster Man's.
Most importantly, though, is the fact that Monster Man wouldn't be the person that he is without his TS. He wouldn't be the 'quirky' little boy that we've watched grow up, always teaching us to think outside the box. He wouldn't be the little boy that taught us to answer every "Why does he do that?" with "Because he's Monster Man" when we had no explanation. He wouldn't be the boy that taught us that being so different can be so much more fun.
We are blessed to have Monster Man just the way he is, and he feels blessed to have been given the gift of TS to open his world up to a whole new group of people that he wouldn't have known otherwise. He has told us that he thinks that his highly vivid imagination comes from his brain working differently (something I've heard from other ticcers as well). We do not feel that there is someone to "blame"; but if there was, we'd like to thank him or her!
Wednesday, May 23, 2012
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.
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.
Tuesday, May 22, 2012
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.
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.
Sunday, May 20, 2012
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.
Saturday, May 19, 2012
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.
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.
Thursday, May 17, 2012
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.
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.
Tuesday, May 15, 2012
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.
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.
Monday, May 16, 2011
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.
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.
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