There are times when I feel like there is such a strong need to protect Monster Man. It seems like there is always something, somewhere that he needs me to protect him from.
The outside world can be such a cruel place, especially with those who don't understand what he is going through. During the early stages of one of his rage episodes, I overheard someone who was witnessing it state that he was being a brat and that he needed disciplined. They had no idea what he and I were both dealing with at that particular moment, that his rage was not something that he could easily control, and that disciplining him in any way other than to remove him from the situation and give him time to 'cool down' would only have made the situation worse.
The cruelty of those that make remarks like that are not the only thing he needs protected from, though. He's recently started having a severe head-shaking tic. There are times when it is very mild, and there are other times when he shakes his head repeatedly to the point that he makes himself dizzy. As you can imagine, this means that certain situations are not the best to have him in while his tics are at their worst. We were at a cookout yesterday, and he was swinging rather high on a swing right near our picnic table. As he was swinging, he was shaking his head worse than he had all day. I had images in my head of him getting dizzy and falling from the swing. Later, we were swimming in the lake where we were having the cookout, and he was still shaking his head rather hard. I could tell by his expression that he was getting dizzy, but he was refusing to admit it because he didn't want me taking away the fun he was having with his friends in the water. He isn't a very strong swimmer, so I already didn't want him going anywhere where he couldn't touch the ground, and the head shaking made me even more determined to keep him in shallow water. He was heartbroken that I didn't trust him enough to let him go into deeper water, but I had that need to protect him.
The sad thing is that I know I will not always be there to protect him from things that some people might not see the danger in. I won't be there to keep him from going headfirst into deeper water, to keep him from getting in over his head in a situation that he might not be able to get himself out of. And I won't always be there to keep him from being subjected to the cruel comments and stares of people who don't understand the challenges he faces on a daily basis. I will eventually have to allow him to protect himself and to know how to handle these situations.
Showing posts with label Tourettes Syndrome. Show all posts
Showing posts with label Tourettes Syndrome. Show all posts
Monday, May 30, 2011
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.
Monday, May 2, 2011
Why Anti-Histamines Work
I have been doing a little research into why the anti-histamine that Monster Man is on has been helping so much with his rage. Someone on the TSA Facebook page had recently mentioned that her doctor said there was a histamine-connection to Tourette Syndrome. I am posting links to some articles on the subject that help to explain this connection. To me, it offers more explanation as to why an anti-histamine has been so successful at controlling Monster Man's rage and bringing down the number of episodes he's been having at times when they'd otherwise be at their worst.
Potential Role for Histamine Identified in Tourette's Syndrome
Abnormalities in Brain Histamine may be Key Factor in Tourette Syndrome
A Surprising Clue to Tourette Syndrome
Potential Role for Histamine Identified in Tourette's Syndrome
Abnormalities in Brain Histamine may be Key Factor in Tourette Syndrome
A Surprising Clue to Tourette Syndrome
Wednesday, April 13, 2011
Rage - Looking Back
I often catch myself saying that Monster Man's symptoms appeared out of nowhere - that one day he was a normal, happy-go-lucky boy and then suddenly he was filled with tics, anxiety, etc. Looking back, though, I realize that the rage started much earlier than his other symptoms did.
Somewhere between the ages of two and three, Monster Man developed a temper that went far beyond the terrible twos, no matter how much I tried to pass it off as just that. I remember him being about two and a half and getting extremely upset about not getting his way. He went to the end table by the coach and flipped the table over with one large yank on one of the legs. The lamp, picture frames, etc that were on top of the end table went flying.
Another time, when he was almost three, he through a fit in a parking lot that resulted in me holding him tightly while sitting on a grassy median, trying desperately to get him to calm down. I finally managed to get him inside the car, sitting in my lap until he calmed down (at which point I put him in his car seat so we could head home). I didn't want him running in front of a car, something he'd almost done in the process of our struggles. As I closed the car door, an off-duty police officer knocked on the car window asking if he could help me, stating he'd watched me struggling for over 45 minutes. Just seeing the officer finally helped to calm him down, and we were able to get him in his car seat and ready to leave.
Still another time, a few months after his third birthday, I remember sitting with him in my lap, trying to get him to stay quiet at an event at his sister's school. When I told him he needed to calm down, he suddenly got so angry that he turned around and tried to choke me. It didn't take long for me to get him under control, but you could still see that look in his eyes that he gets to this day with his rage episodes. Once he calmed down, he was back to snuggling with me and telling me how much he loves me.
It always amazes me that he can be so loving one minute and so angry the next. He reminds me of Jekyll and Hyde, suddenly changing from good to bad and then back to good, usually without any warning.
Somewhere between the ages of two and three, Monster Man developed a temper that went far beyond the terrible twos, no matter how much I tried to pass it off as just that. I remember him being about two and a half and getting extremely upset about not getting his way. He went to the end table by the coach and flipped the table over with one large yank on one of the legs. The lamp, picture frames, etc that were on top of the end table went flying.
Another time, when he was almost three, he through a fit in a parking lot that resulted in me holding him tightly while sitting on a grassy median, trying desperately to get him to calm down. I finally managed to get him inside the car, sitting in my lap until he calmed down (at which point I put him in his car seat so we could head home). I didn't want him running in front of a car, something he'd almost done in the process of our struggles. As I closed the car door, an off-duty police officer knocked on the car window asking if he could help me, stating he'd watched me struggling for over 45 minutes. Just seeing the officer finally helped to calm him down, and we were able to get him in his car seat and ready to leave.
Still another time, a few months after his third birthday, I remember sitting with him in my lap, trying to get him to stay quiet at an event at his sister's school. When I told him he needed to calm down, he suddenly got so angry that he turned around and tried to choke me. It didn't take long for me to get him under control, but you could still see that look in his eyes that he gets to this day with his rage episodes. Once he calmed down, he was back to snuggling with me and telling me how much he loves me.
It always amazes me that he can be so loving one minute and so angry the next. He reminds me of Jekyll and Hyde, suddenly changing from good to bad and then back to good, usually without any warning.
Monday, January 3, 2011
Who's to blame?
There are times that my husband and I question where Monster Man got his Tourettes, and if either of us is to blame. Not necessarily that we could control it, just we wonder if we are the one that passed down the gene that gave him the problems he is dealing with. Sometimes, I even wonder if it came from both of us.
My husband has epilepsy. From our research, it appears that there is a link between epilepsy and TS. In many cases, children with TS have a parent with either epilepsy or TS, and somewhere along the lines a relative has one or the other even if it isn't a parent. Of course, as would be expected, this link bothers my husband. We've always prayed that our children wouldn't have epilepsy, that they wouldn't have to live in fear of the possibility of a seizure. When we first discovered that Monster Man could have TS, we were actually relieved to know that it wasn't epilepsy, since some of the tics were twitching of the entire left side of his face.
Of course, there are issues on my side of the family that are often found to go along with TS. I have a sensory integration disorder, though mine has never been fully diagnosed (I've had a doctor tell me that is what it is, but it wasn't my own doctor). I can stand certain textures or certain sounds. I get physically ill sometimes just thinking about the sound of fingernails scratching jean-clad legs, and the thought of touching rough fabric sends a chill down my spine. There are times when I have a hard time getting dressed right after a shower just because I don't want to touch the fabric. My family used to think that I was just being picky and strange, though I've since discovered that I get this from my grandmother. Anxiety, as I've mentioned previously, also tends to go hand-in-hand with TS, and my family has had its share of problems with anxiety.
Like I said, we've spent a lot of time contemplating which one of us is to blame, or if we are both to blame, for the challenges that Monster Man is facing. The truth is, though, no one is to blame. As I explained to Monster Man tonight why children with different disabilities are considered 'special', it's not that they were given a burden. Instead, they were chosen by God to have this gift - this one thing that sets them apart from others and makes them who they are. They can look at the challenges they face as something to be upset about, or they can come to understand that maybe, just maybe, they wouldn't be the wonderful people they are inside if they didn't have TS.
My husband has epilepsy. From our research, it appears that there is a link between epilepsy and TS. In many cases, children with TS have a parent with either epilepsy or TS, and somewhere along the lines a relative has one or the other even if it isn't a parent. Of course, as would be expected, this link bothers my husband. We've always prayed that our children wouldn't have epilepsy, that they wouldn't have to live in fear of the possibility of a seizure. When we first discovered that Monster Man could have TS, we were actually relieved to know that it wasn't epilepsy, since some of the tics were twitching of the entire left side of his face.
Of course, there are issues on my side of the family that are often found to go along with TS. I have a sensory integration disorder, though mine has never been fully diagnosed (I've had a doctor tell me that is what it is, but it wasn't my own doctor). I can stand certain textures or certain sounds. I get physically ill sometimes just thinking about the sound of fingernails scratching jean-clad legs, and the thought of touching rough fabric sends a chill down my spine. There are times when I have a hard time getting dressed right after a shower just because I don't want to touch the fabric. My family used to think that I was just being picky and strange, though I've since discovered that I get this from my grandmother. Anxiety, as I've mentioned previously, also tends to go hand-in-hand with TS, and my family has had its share of problems with anxiety.
Like I said, we've spent a lot of time contemplating which one of us is to blame, or if we are both to blame, for the challenges that Monster Man is facing. The truth is, though, no one is to blame. As I explained to Monster Man tonight why children with different disabilities are considered 'special', it's not that they were given a burden. Instead, they were chosen by God to have this gift - this one thing that sets them apart from others and makes them who they are. They can look at the challenges they face as something to be upset about, or they can come to understand that maybe, just maybe, they wouldn't be the wonderful people they are inside if they didn't have TS.
Obsessive Compulsive
From what I've been reading about Tourette Syndrome through both the TSA website and from the National Tourette Syndrome Association facebook page, I've discovered that Monster Man's anxiety issues aren't just anxiety. In fact, they are labeled as a form of OCD. With TS, people who have obsessive compulsive disorder tend to dwell on fear of disasters. It's more a fear of the uncontrollable, rather than a fear of what could happen if you don't do things a certain way (which is the more common form of OCD in patients without TS). This really explains a lot about his anxiety. I mentioned previously about his fear of a hurricane coming up the mountain and his fear about roller coasters coming off the tracks or displayed rockets falling over on top of him. From what I've been reading, this is actually more OCD than just general anxiety.
Monster Man's fears seem to be a big problem sometimes. They seemed to develop overnight, and they've really hit him hard. I was really worried at first that he was alone in these fears, and that something more was really wrong. It is a relief to me to know that this is just a part of his TS, and that so many others with TS are going through the same thing.
Monster Man's fears seem to be a big problem sometimes. They seemed to develop overnight, and they've really hit him hard. I was really worried at first that he was alone in these fears, and that something more was really wrong. It is a relief to me to know that this is just a part of his TS, and that so many others with TS are going through the same thing.
Saturday, January 1, 2011
Can he control it or not?
Sometimes knowing that Monster Man has Tourette Syndrome makes it hard for me to know if certain behaviors are something that he can control or if they are tics. For about a month now, every time Monster Man gets excited while playing a video game or watching a movie, he'll yell "woo-ooo" (like woohoo, without the h). It's always the same noise, always the same tone, and it's always when he is excited. At first, we were telling him to quiet down since he often did this with someone sitting next to him, and it is loud enough that it hurts our ears when we are in close proximity to him. In fact, it seems loud just being in the same room with him when he does this. Now we think it might be one of his many tics, though. It doesn't seem like he can control it, and now he's even starting to get a little upset when he does it himself.
The worst thing about this particular (possible) tic is that it bothers him more than the others. Yes, it does bother us at times, but it really seems to aggravate him even more. He is starting to realize that he can't always control his own body, and it upsets him to feel so helpless. It's going to take a lot of time and work to help him learn how to control this tic and the others he is already experiencing. Hopefully we will soon be able to get him the help he needs to learn how to take back some control of his body.
The worst thing about this particular (possible) tic is that it bothers him more than the others. Yes, it does bother us at times, but it really seems to aggravate him even more. He is starting to realize that he can't always control his own body, and it upsets him to feel so helpless. It's going to take a lot of time and work to help him learn how to control this tic and the others he is already experiencing. Hopefully we will soon be able to get him the help he needs to learn how to take back some control of his body.
Patience
I've often been told that I have a large amount of patience when it comes to children. I didn't know just how much patience one person could have until recently. With all that Monster Man is going through, I've had to learn to be 100 times more patient than I already was before.
The biggest test of my patience has come from Monster Man's anxiety issues. We visited Tallulah Gorge a couple of months ago, and it took almost 45 minutes to get Monster Man to feel comfortable enough to take even a quick look over the lookout into the gorge below. What we'd intended as a 20 minute stop turned into almost an hour as we waited for his nerves to calm. When the worst of his fears hit, we have to choose our battles wisely with him. Is it really going to hurt to give in and let him back away from his fears from time to time? Or should we encourage him to face his fears to help him overcome them? We've learned that each situation is different, and we have to decide whether to help him face his fears or to allow him to turn away.
As the clock struck midnight tonight, signaling the start of 2011, the air outside our windows was filled with the familiar sound of fireworks. Our neighbor's were welcoming the new year in style, celebrating the end of the old and the start of the new. Inside our house was a different story, however. I'd managed to get the kids all to bed around 11:00, and I thought they were all asleep. Of course, Monster Man made his way into my bedroom almost immediately after the first firework exploded. Once again, his anxiety had kicked in and he was extremely nervous. I could tell this by the way he was positioning his mouth, a tic that is triggered by stress for him. He didn't want to admit it, telling me that he just couldn't sleep, but I could see a little fear in his eyes as well.
This time, I was prepared for the situation. I've sometimes been known to let him bring a blanket and pillow into my room and sleep on my floor, and there have been times when I've found him doing the same in Angel Baby's bedroom. Tonight, however, I had a different plan. He received a LeapFrog Crammer for Christmas, a handheld learning device that pairs practice quizzes and flashcards with an MP3 player to help make learning fun. Instead of sleeping with someone else (though Little Man's presence in their room has recently been enough to help Monster Man feel a little safer), I suggested he put his ear phones in and listen to his MP3 player until the fireworks have stopped. For once, he actually went with my suggestion on the first try. Maybe this patience thing is finally helping us both learn how to handle these situations.
The biggest test of my patience has come from Monster Man's anxiety issues. We visited Tallulah Gorge a couple of months ago, and it took almost 45 minutes to get Monster Man to feel comfortable enough to take even a quick look over the lookout into the gorge below. What we'd intended as a 20 minute stop turned into almost an hour as we waited for his nerves to calm. When the worst of his fears hit, we have to choose our battles wisely with him. Is it really going to hurt to give in and let him back away from his fears from time to time? Or should we encourage him to face his fears to help him overcome them? We've learned that each situation is different, and we have to decide whether to help him face his fears or to allow him to turn away.
As the clock struck midnight tonight, signaling the start of 2011, the air outside our windows was filled with the familiar sound of fireworks. Our neighbor's were welcoming the new year in style, celebrating the end of the old and the start of the new. Inside our house was a different story, however. I'd managed to get the kids all to bed around 11:00, and I thought they were all asleep. Of course, Monster Man made his way into my bedroom almost immediately after the first firework exploded. Once again, his anxiety had kicked in and he was extremely nervous. I could tell this by the way he was positioning his mouth, a tic that is triggered by stress for him. He didn't want to admit it, telling me that he just couldn't sleep, but I could see a little fear in his eyes as well.
This time, I was prepared for the situation. I've sometimes been known to let him bring a blanket and pillow into my room and sleep on my floor, and there have been times when I've found him doing the same in Angel Baby's bedroom. Tonight, however, I had a different plan. He received a LeapFrog Crammer for Christmas, a handheld learning device that pairs practice quizzes and flashcards with an MP3 player to help make learning fun. Instead of sleeping with someone else (though Little Man's presence in their room has recently been enough to help Monster Man feel a little safer), I suggested he put his ear phones in and listen to his MP3 player until the fireworks have stopped. For once, he actually went with my suggestion on the first try. Maybe this patience thing is finally helping us both learn how to handle these situations.
Friday, December 31, 2010
It's heartbreaking
Okay, I'll admit it. It's heartbreaking to see my happy-go-lucky little boy turn into the little boy with all the anxiety he has been experiencing. Monster Man's life has changed so much over the past year. While the anxiety is the worst of it for us, there are so many other changes that make my heart ache for him.
Monster Man turned 10 this year. As he's grown older, his hormones have started to change bit by bit. Maybe because of the hormones, but maybe still because of the new struggles he is facing in learning to live with his tics, he has started having horrible mood swings. It doesn't take much to make him angry these days. Some mornings, he's already yelling before he even makes it to the school bus. I know he doesn't mean to be so angry so much of the time, and he's often quick to apologize when he realizes that his temper is getting away from him, but it still saddens me to see how angry he is.
I've noticed that he seems to withdraw from us a little more than he used to, as well. Some days we have to practically beg him to come out of his room. He chooses to stay on his bed, reading a book (at least he's doing something of value with his time), rather than spending family time with us some nights. I've also noticed that he gets a spaced off look from time to time, like he's not completely there with us even when he is sitting right by us. Some days, I cry thinking of my Monster Man slipping away from us.
I know we all have many challenges ahead of us. Our faith in God will help us through.
Monster Man turned 10 this year. As he's grown older, his hormones have started to change bit by bit. Maybe because of the hormones, but maybe still because of the new struggles he is facing in learning to live with his tics, he has started having horrible mood swings. It doesn't take much to make him angry these days. Some mornings, he's already yelling before he even makes it to the school bus. I know he doesn't mean to be so angry so much of the time, and he's often quick to apologize when he realizes that his temper is getting away from him, but it still saddens me to see how angry he is.
I've noticed that he seems to withdraw from us a little more than he used to, as well. Some days we have to practically beg him to come out of his room. He chooses to stay on his bed, reading a book (at least he's doing something of value with his time), rather than spending family time with us some nights. I've also noticed that he gets a spaced off look from time to time, like he's not completely there with us even when he is sitting right by us. Some days, I cry thinking of my Monster Man slipping away from us.
I know we all have many challenges ahead of us. Our faith in God will help us through.
Anxiety
Monster Man used to be the type of child that wasn't afraid of anything. I remember going to the bathroom one time when he was two and walking out to find him standing on top of the refrigerator. While on the swings, he always begged to be pushed higher. Danger? What danger? He didn't seem to know what the word meant.
Imagine my surprise when he started having major anxiety issues this past summer! He and Angel Baby visited my mom in the North Carolina mountains over the summer. You can't even tell you're in the mountains where she lives, but he was sure he was going to fall off the side of the mountain. When he heard about a hurricane in the Atlantic, he was sure it was going to come up the mountain after them. A couple of weeks later, he was invited to Six Flags with his best friend. He refused to go on most of the rides, afraid that the rides would come off the tracks, that he might slip out of his seat belt, that something - anything - might happen to kill him. In fact, he was so scared and was vocalizing his concerns so loudly that he ended up scaring people in line around him.
A week later, my hubby and I took the kids to the Huntsville Space and Rocket Center to see the Star Wars exhibit. Monster Man, a major Star Wars fan, would have a blast (we thought). When we arrived at the space center, he started panicking that the rockets out front would fall over on top of him. We had a hard time getting him to walk around and an even harder time convincing him to give the rides a try (interestingly, once he got on the rides he kept wanting to ride over and over again). Worst of all, he was terrified by the domed movie theater. Sitting too high had him in tears, and he still hid his face when I moved lower with him. The objects on the screen were too big for his comfort.
His anxiety hasn't just turned out to be fear about his own well-being. If Angel Baby's bus is even ten minutes late getting home, he worries that it might have gotten in an accident. If Little Man is running around, Monster Man is afraid he'll fall and get hurt. Sometimes, it seems like Monster Man is in almost a constant state of worry, and it breaks my heart.
Unfortunately, anxiety can go hand-in-hand with Tourette Syndrome. We're currently working on ways to help him calm down when his anxiety hits, including breathing exercises and a lot of patience, and his doctor has given him some medicine for when his anxiety is at its worst (though I've never remembered to have it with me at the times he's needed it thus far, so we're still not sure how well it works for him).
Imagine my surprise when he started having major anxiety issues this past summer! He and Angel Baby visited my mom in the North Carolina mountains over the summer. You can't even tell you're in the mountains where she lives, but he was sure he was going to fall off the side of the mountain. When he heard about a hurricane in the Atlantic, he was sure it was going to come up the mountain after them. A couple of weeks later, he was invited to Six Flags with his best friend. He refused to go on most of the rides, afraid that the rides would come off the tracks, that he might slip out of his seat belt, that something - anything - might happen to kill him. In fact, he was so scared and was vocalizing his concerns so loudly that he ended up scaring people in line around him.
A week later, my hubby and I took the kids to the Huntsville Space and Rocket Center to see the Star Wars exhibit. Monster Man, a major Star Wars fan, would have a blast (we thought). When we arrived at the space center, he started panicking that the rockets out front would fall over on top of him. We had a hard time getting him to walk around and an even harder time convincing him to give the rides a try (interestingly, once he got on the rides he kept wanting to ride over and over again). Worst of all, he was terrified by the domed movie theater. Sitting too high had him in tears, and he still hid his face when I moved lower with him. The objects on the screen were too big for his comfort.
His anxiety hasn't just turned out to be fear about his own well-being. If Angel Baby's bus is even ten minutes late getting home, he worries that it might have gotten in an accident. If Little Man is running around, Monster Man is afraid he'll fall and get hurt. Sometimes, it seems like Monster Man is in almost a constant state of worry, and it breaks my heart.
Unfortunately, anxiety can go hand-in-hand with Tourette Syndrome. We're currently working on ways to help him calm down when his anxiety hits, including breathing exercises and a lot of patience, and his doctor has given him some medicine for when his anxiety is at its worst (though I've never remembered to have it with me at the times he's needed it thus far, so we're still not sure how well it works for him).
The evergrowing tic-list
I mentioned previously that Monster Man started out with two noticeable tics and that the list grew significantly soon after we realized what we were dealing with. Of course, he doesn't have them all at the same time. They come and go, sometimes increasing in severity while others seem to dissipate. They seem to come out of thin air, and some seem to disappear just as quickly as they developed.
Some of Monster Man's tics include:
- Forceful eye blinking
- Throat clearing
- Constant sniffing (he can even sniff and talk at the same time)
- Nose twitching
- Pulling his lips together on the sides while pushing out his bottom lip (kind of hard to explain)
- Taking 3 steps then kicking himself in the back of the leg
- Dragging his toes when wearing flip flops (he went through three pairs this summer before we finally figured out what was going on and had to make him quit wearing them so he wouldn't trip)
- When he gets half-way up or half-way down the stairs, he changes pace and dips down (we always think he's going to fall because of the loud thud it makes)
- Moving his arms in a waving motion, starting with the left hand up to his shoulder, turning his head, and then moving from his right shoulder down to his right hand (looks similar to a dance sometimes)
- Pulling up the left side of his face, almost like a half-smile that forces his eye closed
There are so many more, but these are the ones that come to mind right now. Of course, some are more complex than others. We're still working to identify what all triggers certain tics. The only real obvious ones we've discovered are the flip flops causing him to drag his toes and anxiety causing him to pull his lips together.
Some of Monster Man's tics include:
- Forceful eye blinking
- Throat clearing
- Constant sniffing (he can even sniff and talk at the same time)
- Nose twitching
- Pulling his lips together on the sides while pushing out his bottom lip (kind of hard to explain)
- Taking 3 steps then kicking himself in the back of the leg
- Dragging his toes when wearing flip flops (he went through three pairs this summer before we finally figured out what was going on and had to make him quit wearing them so he wouldn't trip)
- When he gets half-way up or half-way down the stairs, he changes pace and dips down (we always think he's going to fall because of the loud thud it makes)
- Moving his arms in a waving motion, starting with the left hand up to his shoulder, turning his head, and then moving from his right shoulder down to his right hand (looks similar to a dance sometimes)
- Pulling up the left side of his face, almost like a half-smile that forces his eye closed
There are so many more, but these are the ones that come to mind right now. Of course, some are more complex than others. We're still working to identify what all triggers certain tics. The only real obvious ones we've discovered are the flip flops causing him to drag his toes and anxiety causing him to pull his lips together.
In the beginning
We've always known that Monster Man was different. From the time he could talk, he always did things his own way. He didn't like pizza when he was younger, concerned about the pizza sauce getting on his hands (he had no problem with other foods covering him, oddly enough). He didn't like ice cream when he was little, either, choosing instead to have warmer treats than something so cold. Now, at the age of ten, he still doesn't like having milk on his cereal since he says it changes the texture. Those are just a few of the things we noticed, all centered around food, but there were many other things that have always seemed different.
Monster Man has always had an extremely active imagination. From shortly after his second birthday until well after his fifth, he believed that he was Santa. Not just believing in Santa, but truly believing that he was the man in red himself. He wore a red sweatsuit and Santa hat nearly everywhere he went, introducing himself to kids as Santa Claus. He spent hours on end 'practicing' flying his sleigh. He asked for 'real reindeer that can fly' for Christmas. He took imagination to a whole new level, so much so in fact that we often heard comments about whether or not he was normal.
Over time, we came up for a simple answer for why he did things the way that he did. "Because he's Monster Man." We used this answer for just about everything he did. Why did he have to create crazy voices and repeat lines from movies while we watched them? Why did he insist on always wearing his socks inside out? Why did he have to have his food cut just the right way, including having his PBJ cut into four triangles? Why did he get so easily upset when he couldn't get things done just right? Why was he such a perfectionist with his school work? Why did he seem so quirky? Why does he seem like such a spazz? All these questions, and probably a thousand others, were answered the same way.
Out of all three of my children, Monster Man always seemed to be the sickest. What might be a mild cold for Angel Baby would turn out to be a major illness for Monster Man. I remember waking up one morning when he was five weeks old and finding him blue. It was just the start of many respiratory problems he has faced, especially over the course of his first eighteen months of life. During that time, he spent a total of fifteen months sick, with only a few healthy days scattered here and there between illnesses. RSV, bronchitis (three times), and pneumonia (twice) plagued the poor baby, though he rarely let them bring him down. As he got older, he still continued to get extremely sick. He fought off numerous cases of strep, scarlet fever, and ear infections. He ended up with mono in kindergarten and Lyme disease at the end of second grade. It seemed like if anyone was going to get something major, it was going to be Monster Man.
Somewhere around the time that he came down with Lyme disease, Monster Man started having problems with what we thought were allergies. He blinked a lot, really forceful blinks that looked like his eyes were really bothering him. He started clearing his throat all the time, as well. We started treating him with Claritin, hoping to help ease the symptoms he was experiencing. Angel Baby has severe allergies, so it only seemed right that the symptoms Monster Man was experiencing were related to allergies as well. Unfortunately, the more we worked to get rid of the symptoms, the worse the blinking and throat clearing got.
I finally mentioned the symptoms to the pediatrician this past January, nearly two years after the first of the symptoms began. It wasn't until then that we realized that these weren't allergy symptoms at all. Instead, they were tics. He was referred to a pediatric neurologist, though his doctor told me it didn't necessarily mean that he had Tourettes. It took us nearly 10 full months to get an appointment that stuck (the appointments kept getting rescheduled by the office), and by then Monster Man had developed many other tics. In fact, we had seen a total of almost 20 tics by the time that he was finally seen and diagnosed.
And so begins my blogging journey as we experience Monster Man's struggles and triumphs with Tourettes Syndrome.
Monster Man has always had an extremely active imagination. From shortly after his second birthday until well after his fifth, he believed that he was Santa. Not just believing in Santa, but truly believing that he was the man in red himself. He wore a red sweatsuit and Santa hat nearly everywhere he went, introducing himself to kids as Santa Claus. He spent hours on end 'practicing' flying his sleigh. He asked for 'real reindeer that can fly' for Christmas. He took imagination to a whole new level, so much so in fact that we often heard comments about whether or not he was normal.
Over time, we came up for a simple answer for why he did things the way that he did. "Because he's Monster Man." We used this answer for just about everything he did. Why did he have to create crazy voices and repeat lines from movies while we watched them? Why did he insist on always wearing his socks inside out? Why did he have to have his food cut just the right way, including having his PBJ cut into four triangles? Why did he get so easily upset when he couldn't get things done just right? Why was he such a perfectionist with his school work? Why did he seem so quirky? Why does he seem like such a spazz? All these questions, and probably a thousand others, were answered the same way.
Out of all three of my children, Monster Man always seemed to be the sickest. What might be a mild cold for Angel Baby would turn out to be a major illness for Monster Man. I remember waking up one morning when he was five weeks old and finding him blue. It was just the start of many respiratory problems he has faced, especially over the course of his first eighteen months of life. During that time, he spent a total of fifteen months sick, with only a few healthy days scattered here and there between illnesses. RSV, bronchitis (three times), and pneumonia (twice) plagued the poor baby, though he rarely let them bring him down. As he got older, he still continued to get extremely sick. He fought off numerous cases of strep, scarlet fever, and ear infections. He ended up with mono in kindergarten and Lyme disease at the end of second grade. It seemed like if anyone was going to get something major, it was going to be Monster Man.
Somewhere around the time that he came down with Lyme disease, Monster Man started having problems with what we thought were allergies. He blinked a lot, really forceful blinks that looked like his eyes were really bothering him. He started clearing his throat all the time, as well. We started treating him with Claritin, hoping to help ease the symptoms he was experiencing. Angel Baby has severe allergies, so it only seemed right that the symptoms Monster Man was experiencing were related to allergies as well. Unfortunately, the more we worked to get rid of the symptoms, the worse the blinking and throat clearing got.
I finally mentioned the symptoms to the pediatrician this past January, nearly two years after the first of the symptoms began. It wasn't until then that we realized that these weren't allergy symptoms at all. Instead, they were tics. He was referred to a pediatric neurologist, though his doctor told me it didn't necessarily mean that he had Tourettes. It took us nearly 10 full months to get an appointment that stuck (the appointments kept getting rescheduled by the office), and by then Monster Man had developed many other tics. In fact, we had seen a total of almost 20 tics by the time that he was finally seen and diagnosed.
And so begins my blogging journey as we experience Monster Man's struggles and triumphs with Tourettes Syndrome.
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