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.
Saturday, May 19, 2012
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.
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.
Wednesday, May 16, 2012
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.
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.
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 7, 2012
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.
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…
Friday, April 20, 2012
Made an Appointment... and more
I know it's been a while since I've posted here. The truth is, I didn't want to feel like I was complaining since the majority of the time lately we've been dealing with severe rage episodes. The rage has got to be the worst thing that any of us, including Monster Man, has been dealing with in our journey through life with Tourette Syndrome. I do want to take a few moments to catch you up on the positives, though, and to give you an update on how he's doing.
Last weekend, Monster Man took a trip with some friends from school to Tybee Island and Savannah for a competition with their school. I was very nervous about letting him go, especially since his rage has been so bad and I wouldn't be there to control him if he got upset. I talked with his teacher and with a father that was chaperoning, though, and they assured me that they would help make sure that his temper stayed in check. I gave him some of his medication before the car ride down, and he took more right before the competition, just to be safe. He did really well, and they didn't have a single problem with him during the trip. His team came in third place, so he was very excited about how well they did.
Softball season is back in full-force. This is Monster Man's last season on his division, and he'll be moving up to join Angel Baby on the next division in the fall. He is so excited to be back at the fields, where he can see many of the friends he has made over the past few seasons. Being a Christian softball league, the atmosphere at the ball fields is usually very positive, so it's a wonderful place to have all my kids, especially Monster Man, spend their time.
As I mentioned previously, his rage has gotten out of hand, and he's actually starting to become violent on top of saying horrible things, throwing things, attempting to break or actually breaking objects, and slamming doors so hard that they've come off their hinges. He's also been having issues with short-term memory again. He'll start saying something and stop mid-sentence, forgetting that he was even talking to begin with. We originally associated it with his head-shaking tic, since it was only around when his head-shaking tic was around, but he's been having short-term memory loss all week without the head-shaking tic being present. He seems to be developing more tics daily, and they haven't always gone over well at school (most of his teachers are starting to be understanding, but the school still hasn't gotten his IEP or 504 in place and many teachers don't want to acknowledge the TS without the IEP).
I finally broke down today and called the neurologist to make another appointment. I've been putting it off since we'd decided we wanted to try to avoid medication if possible. He's reached a point, though, that we've had to come to realize that he needs more help than we can give him on our own. His appointment isn't until June 25, but it's better than the original wait we had to see the neurologist the first time for the initial diagnosis. I'll be counting down the days!
Last weekend, Monster Man took a trip with some friends from school to Tybee Island and Savannah for a competition with their school. I was very nervous about letting him go, especially since his rage has been so bad and I wouldn't be there to control him if he got upset. I talked with his teacher and with a father that was chaperoning, though, and they assured me that they would help make sure that his temper stayed in check. I gave him some of his medication before the car ride down, and he took more right before the competition, just to be safe. He did really well, and they didn't have a single problem with him during the trip. His team came in third place, so he was very excited about how well they did.
Softball season is back in full-force. This is Monster Man's last season on his division, and he'll be moving up to join Angel Baby on the next division in the fall. He is so excited to be back at the fields, where he can see many of the friends he has made over the past few seasons. Being a Christian softball league, the atmosphere at the ball fields is usually very positive, so it's a wonderful place to have all my kids, especially Monster Man, spend their time.
As I mentioned previously, his rage has gotten out of hand, and he's actually starting to become violent on top of saying horrible things, throwing things, attempting to break or actually breaking objects, and slamming doors so hard that they've come off their hinges. He's also been having issues with short-term memory again. He'll start saying something and stop mid-sentence, forgetting that he was even talking to begin with. We originally associated it with his head-shaking tic, since it was only around when his head-shaking tic was around, but he's been having short-term memory loss all week without the head-shaking tic being present. He seems to be developing more tics daily, and they haven't always gone over well at school (most of his teachers are starting to be understanding, but the school still hasn't gotten his IEP or 504 in place and many teachers don't want to acknowledge the TS without the IEP).
I finally broke down today and called the neurologist to make another appointment. I've been putting it off since we'd decided we wanted to try to avoid medication if possible. He's reached a point, though, that we've had to come to realize that he needs more help than we can give him on our own. His appointment isn't until June 25, but it's better than the original wait we had to see the neurologist the first time for the initial diagnosis. I'll be counting down the days!
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