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.
Wednesday, May 16, 2012
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!
Wednesday, March 21, 2012
Gotta wonder
Knowing that Tourette Syndrome can be hereditary, it's hard to look at Angel Baby and Little Man without wondering if they, too, might have Tourette Syndrome like Monster Man does. What makes us wonder even more is the fact that we know that both Angel Baby and Little Man have issues that can be comorbid with Tourettes.
Angel Baby, like Monster Man, is starting to go through puberty - a time that can increase the symptoms of TS. While she has always had sensory issues (she and I both have a lot of problems with certain textures and sounds) and some problems with anxiety, we've started to realize that some of her other behaviors are actually tics. She has recently started chewing on the inside of her lip more often, too, and she recently sang in a school competition while chewing her lip throughout the entire song. She has always had a tendency to have temper tantrums, as well, and never outgrew it as she got older despite our best efforts to curve this behavior. Things we previously had related to other health issues she's experienced are now being looked at in a new light, and it's hard not to think that she could have TS like her brother.
Little Man is much younger (5 1/2 years younger than Monster Man), so we don't see a pattern of behaviors changing for him like they have with his brother and sister. We have, however, had to accept that he has OCD. We kind of joked around about it before, laughing at how picky he was about how the velcro on his shoes was lined up or commenting on the way that he'd sort his M&M's by color before eating them, even when he was too little to know his colors. Grocery shopping used to be a challenge if Little Man was with me; he'd straighten all the shelves within his reach while I was picking items off other shelves. A trashcan lid that was out of place or a bottle of ketchup not standing in the right direction in the refrigerator could lead to a major meltdown if he wasn't given the opportunity to correct the situation immediately. He's recently started having to have his shoes just perfect - not too loose, not too tight, and the velcro or shoelaces have to be done perfectly as well. Last week, he decided to wear sandals (with 3 velcro straps per shoe!) and he spent over 15 minutes getting his shoes to feel and look right before I finally convinced him to just get on with our day (to which he actually started crying because I wouldn't let him finish his task!). The only complaint his teacher has about him is that he can't seem to speed up his schoolwork because he takes so long trying to get each line of each letter perfect.
OCD, anxiety, tantrums that could equate to rage... They can all be comorbids to the tics of Tourette Syndrome. It's so hard not to wonder if we're seeing signs of things to come with our other two children.
Angel Baby, like Monster Man, is starting to go through puberty - a time that can increase the symptoms of TS. While she has always had sensory issues (she and I both have a lot of problems with certain textures and sounds) and some problems with anxiety, we've started to realize that some of her other behaviors are actually tics. She has recently started chewing on the inside of her lip more often, too, and she recently sang in a school competition while chewing her lip throughout the entire song. She has always had a tendency to have temper tantrums, as well, and never outgrew it as she got older despite our best efforts to curve this behavior. Things we previously had related to other health issues she's experienced are now being looked at in a new light, and it's hard not to think that she could have TS like her brother.
Little Man is much younger (5 1/2 years younger than Monster Man), so we don't see a pattern of behaviors changing for him like they have with his brother and sister. We have, however, had to accept that he has OCD. We kind of joked around about it before, laughing at how picky he was about how the velcro on his shoes was lined up or commenting on the way that he'd sort his M&M's by color before eating them, even when he was too little to know his colors. Grocery shopping used to be a challenge if Little Man was with me; he'd straighten all the shelves within his reach while I was picking items off other shelves. A trashcan lid that was out of place or a bottle of ketchup not standing in the right direction in the refrigerator could lead to a major meltdown if he wasn't given the opportunity to correct the situation immediately. He's recently started having to have his shoes just perfect - not too loose, not too tight, and the velcro or shoelaces have to be done perfectly as well. Last week, he decided to wear sandals (with 3 velcro straps per shoe!) and he spent over 15 minutes getting his shoes to feel and look right before I finally convinced him to just get on with our day (to which he actually started crying because I wouldn't let him finish his task!). The only complaint his teacher has about him is that he can't seem to speed up his schoolwork because he takes so long trying to get each line of each letter perfect.
OCD, anxiety, tantrums that could equate to rage... They can all be comorbids to the tics of Tourette Syndrome. It's so hard not to wonder if we're seeing signs of things to come with our other two children.
Monday, March 12, 2012
Check-up Time
It was time for Monster Man's yearly check-up today. In a way, he was looking forward to it because that meant he could get his physical for Camp Twitch and Shout completed, making him one step closer to the camp he loves so dearly. All weekend, we talked about his check-up and needing to get the forms filled out for camp. I wanted to make sure that he knew well in advance that we were going to the doctor because I know how he can get when it comes to things like doctor's visits and (dare I even say it?!) shots. I didn't want him to feel like I'd blindsided him, taking him with no warning. I figured if we talked about it ahead of time, he wouldn't be as anxious about it when it was actually time for the appointment.
Like even the best laid plans, my plans didn't quite work out, either. I'd made the appointment for the middle of day, at a time when I knew that both Angel Baby and Little Man would still be in school. With them in school, I'd be able to focus all of my attention of Monster Man. Little Man, however, started getting sick over the weekend, and he ended up at the doctor's office right alongside his brother. Little Man, it turned out, had bronchitis, so I was glad I decided to take him to the doctor, but it did mean I wasn't able to focus as much attention on calming Monster Man's nerves as I'd liked to.
As it turned out, Monster Man needed all the help he could get. When we went into the first room, where he had his vision and blood pressure checked, he started getting worked up about having to have his iron level checked. Once he found out he had to have his finger pricked, he started to melt down. We were able to calm him down long enough to get his finger pricked and the iron tested, but that was about it. By the time that we got into the room, he was in tears because he realized he was going to have to have shots. I'm actually surprised that the family in the room next to us couldn't hear him raising his voice to announce that "You can give me my shots over my dead body. You'll have to kill me first," and asking "Why can't they put me to sleep to give me my shots?" I resorted to giving him one of his anti-histamine tablets, which we use to calm him down when his anxiety or his rage are acting up. His pediatrician had not heard how upset he can get before, and she could hear him through the door crying that I couldn't make him take his pill and that I wasn't his boss. Oh what fun we were already having at that point, and the doctor hadn't even walked into the room yet!
For the most part, the appointment itself went well. Despite his anxiety level, he was able to make it through the appointment and through Little Man's appointment without losing it, right up until the moment when it was clear he couldn't hold off on getting his shots any longer. At the point when the nurse entered the room, he started crying again, and it ended up taking another nurse holding one arm still while I held the other for the one nurse to be able to give him both of his shots. It was only two shots, unlike the six that he just knew we were going to "kill" him by giving him. They were over in less time than it took to give him his pill, not counting the time it took to get him under control long enough to give the shots. It is heartbreaking to watch him fight so hard, especially since he gets so strong and hard to control!
When all was said and done, though, he looked up at the nurses and me and said "That wasn't so bad. That was stupid." He let me know multiple times over the next half hour that he felt really, really stupid for fighting so hard and getting so worked up.
He says that he won't be so worked up next time, but I'm not holding my breath with that one. I've heard that from him before. I think the anxiety he gets just builds up so much for him, and it makes the whole idea of shots seem ten times worse than they really are.
Like even the best laid plans, my plans didn't quite work out, either. I'd made the appointment for the middle of day, at a time when I knew that both Angel Baby and Little Man would still be in school. With them in school, I'd be able to focus all of my attention of Monster Man. Little Man, however, started getting sick over the weekend, and he ended up at the doctor's office right alongside his brother. Little Man, it turned out, had bronchitis, so I was glad I decided to take him to the doctor, but it did mean I wasn't able to focus as much attention on calming Monster Man's nerves as I'd liked to.
As it turned out, Monster Man needed all the help he could get. When we went into the first room, where he had his vision and blood pressure checked, he started getting worked up about having to have his iron level checked. Once he found out he had to have his finger pricked, he started to melt down. We were able to calm him down long enough to get his finger pricked and the iron tested, but that was about it. By the time that we got into the room, he was in tears because he realized he was going to have to have shots. I'm actually surprised that the family in the room next to us couldn't hear him raising his voice to announce that "You can give me my shots over my dead body. You'll have to kill me first," and asking "Why can't they put me to sleep to give me my shots?" I resorted to giving him one of his anti-histamine tablets, which we use to calm him down when his anxiety or his rage are acting up. His pediatrician had not heard how upset he can get before, and she could hear him through the door crying that I couldn't make him take his pill and that I wasn't his boss. Oh what fun we were already having at that point, and the doctor hadn't even walked into the room yet!
For the most part, the appointment itself went well. Despite his anxiety level, he was able to make it through the appointment and through Little Man's appointment without losing it, right up until the moment when it was clear he couldn't hold off on getting his shots any longer. At the point when the nurse entered the room, he started crying again, and it ended up taking another nurse holding one arm still while I held the other for the one nurse to be able to give him both of his shots. It was only two shots, unlike the six that he just knew we were going to "kill" him by giving him. They were over in less time than it took to give him his pill, not counting the time it took to get him under control long enough to give the shots. It is heartbreaking to watch him fight so hard, especially since he gets so strong and hard to control!
When all was said and done, though, he looked up at the nurses and me and said "That wasn't so bad. That was stupid." He let me know multiple times over the next half hour that he felt really, really stupid for fighting so hard and getting so worked up.
He says that he won't be so worked up next time, but I'm not holding my breath with that one. I've heard that from him before. I think the anxiety he gets just builds up so much for him, and it makes the whole idea of shots seem ten times worse than they really are.
Tuesday, March 6, 2012
Attachments
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.
As I took clothes out of the washing machine tonight, I discovered two heads to Lego men had fallen out of a pocket and were stuck in the rubber liner of our washing machine. It’s such an unusual find, but it’s also one that brings back memories. The Lego heads, which I’m sure belonged to my youngest son, Little Man, have yet to be missed by my children. That wouldn’t have been the case if they’d belonged to Monster Man when he was little.
Most kids carry around a lovey of some sort for at least a short period of time in their lives. When I think of loveys, I usually think of blankies, baby dolls, or teddy bears. Monster Man, however, formed an attachment with an object that many people thought was crazy. If you’ve ever seen Toy Story, you know that Buzz Lightyear loses his arm in one scene. When Monster Man asked for a Toy Story Play-doh kit when he was little, I thought nothing of it. When he ripped off the arm of the included Buzz Lightyear doll, I must admit I was a little concerned, but I did find it amusing… until he grew attached to Buzz Lightyear’s arm.
The arm couldn’t have been more than an inch and a half in length, and was very narrow. It was something that could easily be misplaced, and it often did when the kids would play in their playroom, emptying their toy box onto the floor and burying Buzz Lightyear’s arm in the process. When toys were put up afterward, the arm would often get tossed into the toy box along with the other toys. It wouldn’t present a real problem until Monster Man decided he needed the arm, usually at bedtime, and we’d begin a frantic search to find the missing arm. There were even times that he’d wake up in the middle of the night to find Buzz Lightyear’s arm was no longer under his pillow, and we’d have to search in, under, and around his bed until the arm was found before Monster Man would drift off to sleep again.
I’ve heard other people talk about having a back-up doll/teddy/blanket in case their child’s beloved lovey was to disappear. I couldn’t see any way of having a back-up Buzz Lightyear arm, short of buying a whole other Toy Story Play-doh kit and breaking the arm off that one. That’s exactly what we ended up doing about six months after the original kit was bought. Buzz Lightyear’s arm ended up in the mouth of one of our puppies, and the arm lost that particular battle. By that time, the Toy Story Play-doh kit was hard to find, too, and we ended up in an extensive search for a replacement before finally finding one and letting Monster Man do the honors of breaking Buzz Lightyear’s arm free. Thankfully, he decided a month or so after that to let the Buzz Lightyear arm go, and he moved on to bigger and better things.
During the time that Monster Man was attached to Buzz Lightyear’s arm, I often heard people refer to his attachment as an “obsession”. At the time, I brushed it off and just counted it as being compared to any other lovey a child has, only an odd choice for a lovey. I didn’t give the word “obsession” much thought until after Monster Man’s diagnosis of Tourette Syndrome. In reading about Tourette Syndrome, I discovered that obsession was usually used in terms of OCD, but that there are some reported cases of obsession with objects, subjects, etc. Perhaps, in the long run, we’ll discover that there really was more to this unusual lovey than we realized way back then.
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