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!
Tuesday, June 5, 2012
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.
Friday, May 18, 2012
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.
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.
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