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.
Monday, May 30, 2011
Saturday, May 28, 2011
Goodbye Elementary School
Monster Man's birthday is September 6, just a few days after the cut-off date for our school system. As a result, he started off school a year behind most of the kids his age. While this may have benefited many other kids, it wasn't the case for Monster Man. He taught himself to read before pre-k, catching on to the reading lessons I was giving to Angel Baby. By kindergarten, he had surpassed his sister's reading level and was actually reading (and understanding) books from the Harry Potter series. His skills in math were advanced, as well, so he quickly became bored in school.
Last school year, we made the decision to pull him out of school and homeschool him using Georgia Cyber Academy, which allowed him to work at his own pace. Since he was already advanced, GCA allowed him to complete both the 3rd and the 4th grade at home. He returned to public school this school year in the 5th grade.
Prior to his diagnosis of Tourette Syndrome, and before he started having so many problems as a result of his TS, we had no doubt in our minds that we'd done the right thing for him. As he started struggling more with short-term memory, numerous tics, and his OCD leading him to believe that he was doing poorly in school just because he wasn't getting all A's, we began to question if even being back in public school was the right thing for him at all. Thankfully, he had teachers that were more than understanding and were able to work with him in just the ways that he needed.
I am pleased to announce that Monster Man completed both the 5th grade and elementary school on Thursday! We are working on ways to improve his memory or to overcome the issues he was having with forgetting things (sometimes even forgetting to turn in work he had completed), such as writing more down in order to keep track of what he needs to get done. He is looking forward to starting middle school in the fall!
Last school year, we made the decision to pull him out of school and homeschool him using Georgia Cyber Academy, which allowed him to work at his own pace. Since he was already advanced, GCA allowed him to complete both the 3rd and the 4th grade at home. He returned to public school this school year in the 5th grade.
Prior to his diagnosis of Tourette Syndrome, and before he started having so many problems as a result of his TS, we had no doubt in our minds that we'd done the right thing for him. As he started struggling more with short-term memory, numerous tics, and his OCD leading him to believe that he was doing poorly in school just because he wasn't getting all A's, we began to question if even being back in public school was the right thing for him at all. Thankfully, he had teachers that were more than understanding and were able to work with him in just the ways that he needed.
I am pleased to announce that Monster Man completed both the 5th grade and elementary school on Thursday! We are working on ways to improve his memory or to overcome the issues he was having with forgetting things (sometimes even forgetting to turn in work he had completed), such as writing more down in order to keep track of what he needs to get done. He is looking forward to starting middle school in the fall!
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.
Friday, May 13, 2011
A mixture of emotions
The past couple of weeks have been pretty tough. Monster Man is alternating between episodes of rage and episodes of extreme clingy-ness. One minute, he's in full rage mode, yelling and throwing things over what seems to us as no big deal (like asking him to clean his room, help unload the dishwasher, or even brush his teeth). The next minute, he's practically attached to my hip, begging for forgiveness for having been in an episode of rage previously. No matter how many times I tell him that it's okay, that I understand he is having a hard time controlling his emotions, he still apologizes. And then he apologizes for apologizing. And sometimes he apologizes for apologizing for apologizing...
I'm beginning to think that he's living in a constant fear of hurting someone's feelings. While he's having an episode, he tells us how much he hates us and how much he thinks we hate him. He says things that he doesn't mean to say, throws things at us, even occasionally tries to hit us. He also tries hurting himself, smacking himself in the face most of the time, but he tried to slam an aluminum pot into his foot the other day and a few days prior had tried to jump over the railing to the stairs. It's so hard seeing him struggling like that and knowing that there is very little that I can do to make it all better with the exception of reassuring him and continuing to show him how much I love him.
The medicine that I've been giving him continues to help with the rage, though I'm trying to limit when I give it to him so that he doesn't build a resistance to it. I try to give it to him only before softball games or other times when I know he lets himself get worked up, or at times when he's already starting to show signs that his emotions are getting out of control and we have to go somewhere. If we're staying home, I try to just let him work through the emotions. If we don't have to be somewhere, then we stay home when he's having a bad day. It's hard on Angel Baby and Little Man to know that we are choosing to cancel outings that aren't needed when he's at his worst, but I can't take the risk of taking him out somewhere (especially when it is just me and the kids) and trying to keep him under control while keeping an eye on the other two as well. We're getting through this bit-by-bit, and I'm hopeful that we'll still be able to do a lot of the fun things we do together each summer.
In the midst of all of this, my husband and I are starting to worry that Little Man might be following in his brother's footsteps. While Little Man does not have any noticeable tics just yet, he has always had a bit of an OCD side to him (he has to have certain things placed in the perfect position or he'll do what he has to do to get it right). He doesn't have anxiety issues, but he is most definitely starting to show signs of having some rage issues. My husband and I see the changes in Little Man's temper and often question whether it is just a stage or if it is signs of things to come. I guess only time will tell.
I'm beginning to think that he's living in a constant fear of hurting someone's feelings. While he's having an episode, he tells us how much he hates us and how much he thinks we hate him. He says things that he doesn't mean to say, throws things at us, even occasionally tries to hit us. He also tries hurting himself, smacking himself in the face most of the time, but he tried to slam an aluminum pot into his foot the other day and a few days prior had tried to jump over the railing to the stairs. It's so hard seeing him struggling like that and knowing that there is very little that I can do to make it all better with the exception of reassuring him and continuing to show him how much I love him.
The medicine that I've been giving him continues to help with the rage, though I'm trying to limit when I give it to him so that he doesn't build a resistance to it. I try to give it to him only before softball games or other times when I know he lets himself get worked up, or at times when he's already starting to show signs that his emotions are getting out of control and we have to go somewhere. If we're staying home, I try to just let him work through the emotions. If we don't have to be somewhere, then we stay home when he's having a bad day. It's hard on Angel Baby and Little Man to know that we are choosing to cancel outings that aren't needed when he's at his worst, but I can't take the risk of taking him out somewhere (especially when it is just me and the kids) and trying to keep him under control while keeping an eye on the other two as well. We're getting through this bit-by-bit, and I'm hopeful that we'll still be able to do a lot of the fun things we do together each summer.
In the midst of all of this, my husband and I are starting to worry that Little Man might be following in his brother's footsteps. While Little Man does not have any noticeable tics just yet, he has always had a bit of an OCD side to him (he has to have certain things placed in the perfect position or he'll do what he has to do to get it right). He doesn't have anxiety issues, but he is most definitely starting to show signs of having some rage issues. My husband and I see the changes in Little Man's temper and often question whether it is just a stage or if it is signs of things to come. I guess only time will tell.
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
More control
We had another softball game on Saturday morning. The past few weeks at softball, as I've mentioned, had been filled with on-again/off-again episodes of rage. One of the big things we were dealing with as a result of the rage was that Monster Man didn't want anyone touching his softball equipment, nor did he want to share his treasured spot on the pitcher's mound. He skinned his knees up pretty badly early in the week last week and was still having problems walking as a result, so I'd been warning him for a few days that I was going to put him in the outfield so he didn't have to run as much. At first, he was okay with it, but as game day rolled around he let me know that he was not happy at all with this arrangement, and he kept begging me to put him in the pitcher's circle. He even went as far as refusing to get dressed Saturday morning until the very last possible second, when I threatened to take him in his pajamas (I've mentioned before that I am coaching, so I have to be at the fields). He was NOT playing if he couldn't be pitcher.
Once at the fields, he sat in a chair and pouted while watching Angel Baby's game. During that time, I decided to go ahead and give him another one of the anti-histamine pills that he'd had the previous weekend. I knew we had seen improvements at the last game thanks to the medication, and I thought it was best to give it another try. By the time we had to head to the field where his game was taking place, he was perfectly happy with me telling him that 'we'll see' about putting him in the pitcher's circle later in the game. He went into the outfield without a single complaint.
The biggest surprise of all came when he was in the batting circle, waiting for his turn to hit. The little girl that batted before him is one that he has been fighting the most with, possibly because she is the one with an attitude closest to what he's had recently, and the two seem to play off each other with their attitudes sometimes. She is the one person that he fights the hardest not to let her touch his softball equipment. So imagine everyone's surprise when, as she was selecting a different bat, he said "Do you want to use my bat?" and handed it to her! And he didn't throw a fit when I decided to keep him in the outfield for the entire game. Everyone was commenting on the difference in him by the end of the game - the parents, the assistant coach, even the other players.
The anti-histamine that he's started using when he needs help controlling his rage has been an amazing help. I am so relieved that I have found something to help him control himself when his emotions get the best of him.
Once at the fields, he sat in a chair and pouted while watching Angel Baby's game. During that time, I decided to go ahead and give him another one of the anti-histamine pills that he'd had the previous weekend. I knew we had seen improvements at the last game thanks to the medication, and I thought it was best to give it another try. By the time we had to head to the field where his game was taking place, he was perfectly happy with me telling him that 'we'll see' about putting him in the pitcher's circle later in the game. He went into the outfield without a single complaint.
The biggest surprise of all came when he was in the batting circle, waiting for his turn to hit. The little girl that batted before him is one that he has been fighting the most with, possibly because she is the one with an attitude closest to what he's had recently, and the two seem to play off each other with their attitudes sometimes. She is the one person that he fights the hardest not to let her touch his softball equipment. So imagine everyone's surprise when, as she was selecting a different bat, he said "Do you want to use my bat?" and handed it to her! And he didn't throw a fit when I decided to keep him in the outfield for the entire game. Everyone was commenting on the difference in him by the end of the game - the parents, the assistant coach, even the other players.
The anti-histamine that he's started using when he needs help controlling his rage has been an amazing help. I am so relieved that I have found something to help him control himself when his emotions get the best of him.
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