I've been thinking back a little, trying to remember when Monster Man really started showing signs of his TS and OCD. Though the majority of the signs didn't show themselves until the past couple of years, I have to wonder if maybe the anxiety started much earlier than I realized.
Monster Man didn't learn how to swim until this past summer. I didn't think too much of it, though I did notice that his troubles were due to fear once he realized that he was actually swimming without support. Before this summer, he'd make it about three feet before his feet would drop below the water and he would start to sink. I remember when he was younger, even when he was tall enough to touch in the shallow end, he'd start crying that he was drowning if I wasn't holding on to him. I thought he was just nervous and overreacting, and I kept reassuring him; we even quit going to the pool for quite some time just to give him a break from trying to teach him to swim. Now that I look back at it, knowing what he is experiencing with his anxiety/OCD, I have to wonder if this was an early sign of things to come.
Friday, January 7, 2011
Thursday, January 6, 2011
When He grows up...
Sometimes I listen to the things that Monster Man talks about being when he grows up, and it almost makes me want to cry. So many of the things he mentions involve the things that he has recently become so scared of.
For years, he has talked about being a racecar driver. He wants to be a part of Nascar, driving right alongside some of his favorite drivers. He has made plans of how to get the money for his car, who to turn to for sponsorship, even what colors he wants his car to be. He has drawn pictures of his dream car, posting them all over his room. He has created his own version of a Nascar magazine for kids. I would love to see him meet this dream that he has put so much effort into, but then I think back to the fact that he's scared of the possibility of accidents, that he doesn't even like to sit on the driver's side of the car anymore, and it makes me wonder how he will ever be able to reach this dream.
He has also started taking an interest in outer space. He often talks about becoming an astronaut. He draws pictures of space shuttles sometimes, but he doesn't put as much effort into this dream as he does into his dream of becoming a Nascar driver. Still, though, I can't help but wonder about how he can achieve this goal. He's terrified of heights, busting into tears at the thought of being in a high space (though we can usually help him become more comfortable if we allow him to take time to adjust and if we stay patient with him. Even the thought of getting on an airplane scares him, so how could he handle getting into a space shuttle? And what about his reaction at the space center, when he was scared the rockets would fall over on top of him and crush him. He didn't even want to go near them, so how is he supposed to get into a shuttle? He talks about saving up to send himself to Space Camp, but I just don't know if I'd be able to let him go knowing how much these things scare him.
I want so badly to support Monster Man with his dreams. I've always wanted to encourage my children and to help them reach the goals that they hope to achieve. It's so hard to support Monster Man with all these questions in my mind, though. All I can do is pray for his fears to be relieved.
For years, he has talked about being a racecar driver. He wants to be a part of Nascar, driving right alongside some of his favorite drivers. He has made plans of how to get the money for his car, who to turn to for sponsorship, even what colors he wants his car to be. He has drawn pictures of his dream car, posting them all over his room. He has created his own version of a Nascar magazine for kids. I would love to see him meet this dream that he has put so much effort into, but then I think back to the fact that he's scared of the possibility of accidents, that he doesn't even like to sit on the driver's side of the car anymore, and it makes me wonder how he will ever be able to reach this dream.
He has also started taking an interest in outer space. He often talks about becoming an astronaut. He draws pictures of space shuttles sometimes, but he doesn't put as much effort into this dream as he does into his dream of becoming a Nascar driver. Still, though, I can't help but wonder about how he can achieve this goal. He's terrified of heights, busting into tears at the thought of being in a high space (though we can usually help him become more comfortable if we allow him to take time to adjust and if we stay patient with him. Even the thought of getting on an airplane scares him, so how could he handle getting into a space shuttle? And what about his reaction at the space center, when he was scared the rockets would fall over on top of him and crush him. He didn't even want to go near them, so how is he supposed to get into a shuttle? He talks about saving up to send himself to Space Camp, but I just don't know if I'd be able to let him go knowing how much these things scare him.
I want so badly to support Monster Man with his dreams. I've always wanted to encourage my children and to help them reach the goals that they hope to achieve. It's so hard to support Monster Man with all these questions in my mind, though. All I can do is pray for his fears to be relieved.
Tuesday, January 4, 2011
You never really know
You never really know when a new tic or a new fear will start up. It seems like they come out of nowhere. It's weird how something that you have done just about every day of your life can suddenly turn into something that makes you nervous or at least uncomfortable.
Earlier today, I took Angel Baby, Monster Man, and Little Man to the store with me. Little Man sat in his usual seat directly behind me and Angel Baby sat in the other captain's seat beside him. Monster Man chose to sit on the rear bench seat, directly behind Little Man. I was driving down the road, less than five minutes from the house, when Monster Man suddenly informed me that he needed to change seats. I had to stop to let him move over directly behind Angel Baby. His reason for the switch, as told in a very nervous tone, was that he was "uncomfortable" and that sitting on that side of the van is "kind of freaky". Evidently, he suddenly realized that the cars on the other side of the road were closer to him than he thought, and he suddenly became afraid that one might cross over the yellow line and hit the van, injuring him. Once we got to the store, he also informed me that he was "kind of scared" when crossing the parking lot, afraid someone might come flying into the parking lot and hit one of us.
I can't even begin to imagine what it must be like to be in his shoes, constantly afraid that something bad might happen.
Earlier today, I took Angel Baby, Monster Man, and Little Man to the store with me. Little Man sat in his usual seat directly behind me and Angel Baby sat in the other captain's seat beside him. Monster Man chose to sit on the rear bench seat, directly behind Little Man. I was driving down the road, less than five minutes from the house, when Monster Man suddenly informed me that he needed to change seats. I had to stop to let him move over directly behind Angel Baby. His reason for the switch, as told in a very nervous tone, was that he was "uncomfortable" and that sitting on that side of the van is "kind of freaky". Evidently, he suddenly realized that the cars on the other side of the road were closer to him than he thought, and he suddenly became afraid that one might cross over the yellow line and hit the van, injuring him. Once we got to the store, he also informed me that he was "kind of scared" when crossing the parking lot, afraid someone might come flying into the parking lot and hit one of us.
I can't even begin to imagine what it must be like to be in his shoes, constantly afraid that something bad might happen.
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.
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