The past several weeks have been a series of ups and downs where Monster Man is concerned. School starts this coming Thursday. For Monster Man, that doesn't just mean a new school year; it also means a new school. Monster Man will be moving up to middle school this year.
At the end of last school year, he was so excited about the new opportunities that lay ahead. He was eager to join the band, attend after school clubs, and go to his first school dance. Most of all, he was looking forward to having a locker. Middle school would be filled with exciting changes!
Then the anxiety hit. Kids in middle school can be mean, as Angel Baby so nicely informed him. Middle school comes with more responsibility, and he suddenly realized that the school work would get harder too. Just the thought of harder work alone was enough to bring Monster Man to tears. He began to have panic attacks at the mention of middle school and the start of a new school year.
I was in between a rock and a hard place. On one hand, I wanted to be able to stay at home and homeschool Monster Man again. I wanted to be able to hold him back and protect him from all the things he found so frightening. On the other hand, I knew that sheltering him from the things that scared him wouldn't help prepare him for the future. I also knew that my own busy school schedule wouldn't allow me to be home to homeschool him.
Just when I was about to give up my own classes to stay home with him, he decided he was excited again. Over the past couple of weeks, Monster Man has continued to go back and forth on the issue. One day, he's excited about going to school. The next, he's back to being scared. His backpack is packed and ready to go now. We meet his teachers Tuesday night. Thursday morning, I hope to be able to get him on the bus without his anxiety building up too much. If it comes down to it, I will drive him to school to give him more time to calm his nerves.
I am sure he will be fine. I can't wait for Thursday to get here so I can hear how his first day of middle school goes!
Sunday, July 31, 2011
Thursday, July 14, 2011
Haircut Time
Monster Man has been trying to let his hair get a little longer. He has a certain style in mind, though we're having to come to a compromise on it. He wants it longer like many of the boys are wearing these days, with his bangs coming slightly over one eye. I, on the other hand, do not like the way it looks having hair over the eyes and worry about how it would affect both his vision and his eye tics. I've agreed he can wear it a little longer as long as the bangs are not in front of either of his eyes.
The biggest problem I am having is getting Monster Man to understand that it needs to be trimmed from time to time to make sure he doesn't end up with a mullet or some other crazy hairstyle. He's afraid that even a trim won't let his hair grow out. The need to trim his hair has become a bit of a battle, and battles with Monster Man are never easy.
Last night, I gave Angel Baby and Little Man some very much needed haircuts. Theirs were not trims, but instead were major cuts. I planned on trimming Monster Man's hair afterward. When he sat down and I started trimming just a little off the bangs (about 1/4 inch, if even that much). I knew I had to take it slow, cutting very small amounts at a time since his head shaking tic has been bad again and I didn't want to end up cutting it too short.
I barely got any of it done before I came to the realization that I'm not going to be able to be the one to trim his hair when his head shaking tic is so severe. Between the need to keep my hands steady and work to keep his hair looking good (especially since I have no training when it comes to cutting hair) and the need to fight back tears watching him struggle so much, it makes cutting his hair almost impossible for me.
I think for now I'll take him to get it trimmed, and try again another time if his head shaking isn't a problem.
I barely got any of it done before I came to the realization that I'm not going to be able to be the one to trim his hair when his head shaking tic is so severe. Between the need to keep my hands steady and work to keep his hair looking good (especially since I have no training when it comes to cutting hair) and the need to fight back tears watching him struggle so much, it makes cutting his hair almost impossible for me.
I think for now I'll take him to get it trimmed, and try again another time if his head shaking isn't a problem.
Monday, July 11, 2011
Camp Twitch and Shout
Monster Man had the honor of attending Camp Twitch and Shout last week. This incredible camp offers kids with Tourette Syndrome the chance to spend a week with other kids like themselves, being themselves and not having to worry about hiding their need to 'twitch and shout'.
When we first dropped Monster Man off at his camp last Sunday, we were a little concerned about how he would do. After everything we had read about the camp, and after the wonderful tour and friendly staff, we had no concerns about it being the right place for our son, but we weren't sure if he was ready for a week away from us. We had some many questions about how he would react being away for so long, whether or not he'd have a rage episode, if he'd try to test the limits while swimming, etc.
Thankfully, the counselors had taken the time to get to know everything that we reported might present a problem during the week. They had come to the camp prepared for anything Monster Man might throw at them, and they did an amazing job giving him what he has told us was 'an amazing week'.
Monster Man loved the camp so much that he was in tears when I went to pick him up, sad to be leaving his new friends behind him. He is already counting down the days until the family camp in September, as well as making plans for his trip to camp next summer.
I am so thankful that he has Camp Twitch and Shout to help him make new friends like himself and to help him discover that he isn't so different after all (and that being different is a great thing to be!).
When we first dropped Monster Man off at his camp last Sunday, we were a little concerned about how he would do. After everything we had read about the camp, and after the wonderful tour and friendly staff, we had no concerns about it being the right place for our son, but we weren't sure if he was ready for a week away from us. We had some many questions about how he would react being away for so long, whether or not he'd have a rage episode, if he'd try to test the limits while swimming, etc.
Thankfully, the counselors had taken the time to get to know everything that we reported might present a problem during the week. They had come to the camp prepared for anything Monster Man might throw at them, and they did an amazing job giving him what he has told us was 'an amazing week'.
Monster Man loved the camp so much that he was in tears when I went to pick him up, sad to be leaving his new friends behind him. He is already counting down the days until the family camp in September, as well as making plans for his trip to camp next summer.
I am so thankful that he has Camp Twitch and Shout to help him make new friends like himself and to help him discover that he isn't so different after all (and that being different is a great thing to be!).
Tuesday, June 28, 2011
Comfort Zone
I was talking to my aunt over the weekend, explaining some of the obstacles Monster Man faces after she'd asked about Tourette Syndrome, when my mom reminded me that I needed to explain to her about being Monster Man's "comfort zone". I realized then that I've talked a little about being his comfort zone, but I haven't really explained what I mean when I say that I am his comfort zone.
Those with Tourette Syndrome often try to suppress their tics, their rage, or their anxiety. Rather than letting others see their struggles, they hold them in as long as they can. After all, the public isn't always as accepting of their tendencies as they should be. As the tics and emotions are held inside, they build up more and more, just waiting to be released. Then, when the Touretter can't hold it in any longer or gets somewhere where he or she can release the tics or emotions without worrying about being judged, the bottled up tics and emotions come out ... and they come out much stronger and much more severe than they would've had they initially been released.
That safe place to release the tics and emotions - that place where the Touretter knows that he or she will not be judged by the tics, the rage, the anxiety, etc - is his or her "comfort zone". The comfort zone isn't just a place, however. It is often times a person or a group of people. In Monster Man's case, his comfort zone isn't at home; it is anywhere that I am. He knows that my love is unconditional, that I won't stop loving him when he lashes out at me or when he shakes his head so hard it makes him dizzy. He knows that, when he finally calms down (sometimes hours after his rage starts), I will always be there for a hug. He knows that, no matter how many times he tells me he hates me, I continue to love him and I know that he really does love me.
Sometimes, being the comfort zone is a hard job. It isn't easy to hear him call me names, to hear the hateful tone in his voice, and to have him blame me for all the struggles he is facing. It isn't easy to have him aim all that anger directly at me. But at the end of the day, when all is said and done, I know that he really does love me, and that he's only aiming his aggression at me because I am doing a good job of loving him and letting him know that he is loved. And I know that all those harsh words will eventually be followed by hugs, apologies, and a much happier, more loving Monster Man.
Those with Tourette Syndrome often try to suppress their tics, their rage, or their anxiety. Rather than letting others see their struggles, they hold them in as long as they can. After all, the public isn't always as accepting of their tendencies as they should be. As the tics and emotions are held inside, they build up more and more, just waiting to be released. Then, when the Touretter can't hold it in any longer or gets somewhere where he or she can release the tics or emotions without worrying about being judged, the bottled up tics and emotions come out ... and they come out much stronger and much more severe than they would've had they initially been released.
That safe place to release the tics and emotions - that place where the Touretter knows that he or she will not be judged by the tics, the rage, the anxiety, etc - is his or her "comfort zone". The comfort zone isn't just a place, however. It is often times a person or a group of people. In Monster Man's case, his comfort zone isn't at home; it is anywhere that I am. He knows that my love is unconditional, that I won't stop loving him when he lashes out at me or when he shakes his head so hard it makes him dizzy. He knows that, when he finally calms down (sometimes hours after his rage starts), I will always be there for a hug. He knows that, no matter how many times he tells me he hates me, I continue to love him and I know that he really does love me.
Sometimes, being the comfort zone is a hard job. It isn't easy to hear him call me names, to hear the hateful tone in his voice, and to have him blame me for all the struggles he is facing. It isn't easy to have him aim all that anger directly at me. But at the end of the day, when all is said and done, I know that he really does love me, and that he's only aiming his aggression at me because I am doing a good job of loving him and letting him know that he is loved. And I know that all those harsh words will eventually be followed by hugs, apologies, and a much happier, more loving Monster Man.
Thursday, June 16, 2011
The End of a Good Break
Monster Man has had such a good break from some of the worst problems he faces with Tourette Syndrome. After about five days in a row of panic attacks, which were also days filled with many episodes of rage, as well as about two weeks of a really bad head-shaking tic, he has managed to have almost a full week with no rage, no panic attacks, and very few mild tics.
Of course, Tourette Syndrome seems to like to throw us all for a loop. We had some storms come through last night that evidently brought back some of Monster Man's anxiety. He didn't come downstairs to let us know that he was scared, so he instead stayed in his room where he didn't sleep well last night. Of course, that has affected his attitude for today. We've already seen the start of what easily could've turned into episodes of rage had we not been able to get him calmed down before they worsened. To top it all off, the storms started while we were at church last night, with us driving home in the storm, which set off the head shaking tic and also brought back his 'painful tic'. As Monster Man's nerves were getting hit harder, his head was shaking faster, his eyes kept looking up in opposite directions, and he'd get that really wide smile. Between the eyes and the smile, he had quite a headache when we got home.
It is so sad to see him go through these sudden changes, when even Monster Man isn't sure what to expect with each passing moment. Sometimes, he asks me if he is 'losing it'. Other times, he asks me what is wrong with him and why he can't learn to control the tics, the anger, and the anxiety. I still don't have all the answers he needs, so all I can do is hug him and reassure him that everything will be okay.
Of course, Tourette Syndrome seems to like to throw us all for a loop. We had some storms come through last night that evidently brought back some of Monster Man's anxiety. He didn't come downstairs to let us know that he was scared, so he instead stayed in his room where he didn't sleep well last night. Of course, that has affected his attitude for today. We've already seen the start of what easily could've turned into episodes of rage had we not been able to get him calmed down before they worsened. To top it all off, the storms started while we were at church last night, with us driving home in the storm, which set off the head shaking tic and also brought back his 'painful tic'. As Monster Man's nerves were getting hit harder, his head was shaking faster, his eyes kept looking up in opposite directions, and he'd get that really wide smile. Between the eyes and the smile, he had quite a headache when we got home.
It is so sad to see him go through these sudden changes, when even Monster Man isn't sure what to expect with each passing moment. Sometimes, he asks me if he is 'losing it'. Other times, he asks me what is wrong with him and why he can't learn to control the tics, the anger, and the anxiety. I still don't have all the answers he needs, so all I can do is hug him and reassure him that everything will be okay.
Thursday, June 2, 2011
Panic Attack!
I knew anxiety pretty much goes hand-in-hand with Tourette Syndrome, but it still didn't prepare me for the major scare that Monster Man gave me Tuesday morning. It was early in the morning. Little Man was playing the Wii and Angel Baby was still asleep. I was taking advantage of the quiet, lazy morning. I sat on the couch, working on my computer, doing the first required assignments for my online classes, which were due to start the next morning (I like to get ahead as much as possible). When Monster Man woke up, he came downstairs and curled up next to me on the couch, his head resting on my shoulder.
Within a few minutes of walking down the stairs, he started shaking uncontrollably. He balled up almost in the fetal position, still keeping his head on my shoulder while bringing his knees to his chest. He continued to shake like that, gasping every few minutes. When I asked him what was wrong, he said he didn't know. All he did know was that he didn't feel right and that he was struggling to breath.
He'd been experiencing some problems with anxiety the night before, so I figured the whole episode was anxiety related. I had him breath deep, having him copy my examples in an effort to calm him down. I considered calling his pediatrician, but I knew if I was advised to bring him in that he would never let me get him in the car and drive him there. He wanted me to hold him, to reassure him that he'd be okay. Instead of getting up to make the call, I decided to continue the breathing exercises with him, all the while running my fingers through his hair and keeping one arm wrapped around him. After what seemed to me like forever but was probably only a matter of minutes, he fell asleep in my arms. He stayed there, sleeping in my arms, for about 15 minutes before he woke up feeling a lot better but still exhausted.
In asking for advice, I discovered that panic attacks are not uncommon in those with Tourette Syndrome. I also found out that his behavior during the attack was pretty typical for those who have experienced them or have children who have experienced them. It was a huge relief to find out that this was just another normal part of the TS, and that he isn't (as he started worrying after he had it) 'going mad'. He's had two more panic attacks start to appear since then, but he has been able to control them with breathing and prayer before they got as bad as that first attack. If he ever has another bad one, I've received some good tips on how to handle them: deep breathing, warm showers, massages, and distraction techniques.
Within a few minutes of walking down the stairs, he started shaking uncontrollably. He balled up almost in the fetal position, still keeping his head on my shoulder while bringing his knees to his chest. He continued to shake like that, gasping every few minutes. When I asked him what was wrong, he said he didn't know. All he did know was that he didn't feel right and that he was struggling to breath.
He'd been experiencing some problems with anxiety the night before, so I figured the whole episode was anxiety related. I had him breath deep, having him copy my examples in an effort to calm him down. I considered calling his pediatrician, but I knew if I was advised to bring him in that he would never let me get him in the car and drive him there. He wanted me to hold him, to reassure him that he'd be okay. Instead of getting up to make the call, I decided to continue the breathing exercises with him, all the while running my fingers through his hair and keeping one arm wrapped around him. After what seemed to me like forever but was probably only a matter of minutes, he fell asleep in my arms. He stayed there, sleeping in my arms, for about 15 minutes before he woke up feeling a lot better but still exhausted.
In asking for advice, I discovered that panic attacks are not uncommon in those with Tourette Syndrome. I also found out that his behavior during the attack was pretty typical for those who have experienced them or have children who have experienced them. It was a huge relief to find out that this was just another normal part of the TS, and that he isn't (as he started worrying after he had it) 'going mad'. He's had two more panic attacks start to appear since then, but he has been able to control them with breathing and prayer before they got as bad as that first attack. If he ever has another bad one, I've received some good tips on how to handle them: deep breathing, warm showers, massages, and distraction techniques.
Monday, May 30, 2011
The Need to Protect Him
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.
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.
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