We've had a couple of interesting occurrences over the past few days that have really stuck out as being different, even when it comes to Monster Man.
One day last week, I took the kids to the grocery store with me to get a few items. Not much, and I planned on being in and out of the store in about 10 minutes' time, if that long. While walking down one aisle, I happened to notice that Monster Man kept drifting over to the right, along the shelves, so that he could rub his shoulder on the different items hanging down off the sides (like the packs of seasonings that are clipped on chains), as well as rubbing his shoulder on the coupon machines. I wasn't sure what he was doing, so I pulled him away before he could 'bump into' the next one. When he realized he'd missed one, he actually had to take a step back and make sure he bumped into it before he could continue down the aisle. He progressed like this through the whole store, and I don't think he really even realized what he was doing. He had that glazed over look to his eyes that he sometimes gets with his tics. Sure enough, after talking to a few other parents of children with TS, this is something they have experienced! Since that day, he's also done this walking along the plants in a home improvement store. Needless to say, I'm not taking him down any aisles filled with glass objects for a while.
Yesterday, Monster Man came home from school slapping himself on the arms. He kept complaining that it felt like someone was biting him on the arms (not the usually feeling of itchiness caused by a bug bite kind of biting, either). He said he'd that feeling all day long, and it continued until he went to bed. I am anxious to see if this has continued when he gets home from school. Someone suggested to me that it could be a tic and that he's trying to explain why he is slapping himself.
Tuesday, March 22, 2011
Thursday, March 17, 2011
Trying to Reach a New Understanding
Tourette Syndrome is so often misunderstood. When I first started telling family and friends that Monster Man most likely had Tourette Syndrome, the most common response I got was "He isn't going to start cussing is he?". Sadly, this is one of the most misunderstood things about Tourette Syndrome. The reality is that cussing, or coprolalia as it is officially called, is actually very rare.
Most people with Tourette Syndrome have similar tics to what Monster Man is experiencing - eye blinking, throat clearing, sniffing, and other similar movements. Some are a little more complex, such as the times when Monster Man starts taking three steps and then kicking himself in the back of the leg. There is such a variety of tics that are experienced, and they range in varying degrees. Tourette Syndrome has many faces.
In recent weeks, there has been a little more awareness about Tourette Syndrome. In fact, TS is making headlines thanks to American Idol finalist James Durbin. James Durbin has both Tourette Syndrome and Asperger's (a form of autism). His appearance on American Idol has been bringing about a new interest for many looking for find more information on both Tourette Syndrome and Asperger's. James Durbin is helping Americans reach a new understanding.
I found a great news clip this morning from Atlanta's Fox 5 that talks more about James Durbin and gives a little more insight into life with TS. Thank you to Fox 5 for helping spread the word!
Most people with Tourette Syndrome have similar tics to what Monster Man is experiencing - eye blinking, throat clearing, sniffing, and other similar movements. Some are a little more complex, such as the times when Monster Man starts taking three steps and then kicking himself in the back of the leg. There is such a variety of tics that are experienced, and they range in varying degrees. Tourette Syndrome has many faces.
In recent weeks, there has been a little more awareness about Tourette Syndrome. In fact, TS is making headlines thanks to American Idol finalist James Durbin. James Durbin has both Tourette Syndrome and Asperger's (a form of autism). His appearance on American Idol has been bringing about a new interest for many looking for find more information on both Tourette Syndrome and Asperger's. James Durbin is helping Americans reach a new understanding.
I found a great news clip this morning from Atlanta's Fox 5 that talks more about James Durbin and gives a little more insight into life with TS. Thank you to Fox 5 for helping spread the word!
Tuesday, March 15, 2011
Leg Pain
For many years now, Monster Man has been experiencing severe pain in his legs. Sometimes the pain gets so bad that he doesn't even want to walk, and he just lays there, holding his legs and crying. I always feel so bad for him, especially when it sneaks up at times when we don't have medicine on us. I usually try to remember to keep ibuprofen with me for times like that, but there are occasions when I've taken it out for one reason or another, or I've run out and haven't had a chance to buy more, and he starts hurting when we're away from home.
We usually try to massage his legs when it starts up, hoping to offer him some relief. Sometimes it requires an ice pack. Sometimes we have to rub him down with Icy Hot to give him the relief he needs. Almost always, the ibuprofen is a requirement in order for his legs to stop throbbing. It is heartbreaking to see him in so much pain!
I've recently discovered that many people with Tourette Syndrome complain of leg pain like this. From what I'm understanding, they have tics in their legs that are causing the pain to arise and to worsen. I wish there was a way to train him to have a different tic at those times, like some people are able to do with other tics (screaming being replaced with whistling, cussing being replaced with similar but more acceptable words, etc).
We usually try to massage his legs when it starts up, hoping to offer him some relief. Sometimes it requires an ice pack. Sometimes we have to rub him down with Icy Hot to give him the relief he needs. Almost always, the ibuprofen is a requirement in order for his legs to stop throbbing. It is heartbreaking to see him in so much pain!
I've recently discovered that many people with Tourette Syndrome complain of leg pain like this. From what I'm understanding, they have tics in their legs that are causing the pain to arise and to worsen. I wish there was a way to train him to have a different tic at those times, like some people are able to do with other tics (screaming being replaced with whistling, cussing being replaced with similar but more acceptable words, etc).
Monday, March 14, 2011
Time Change Rage
We had been doing so well in recent weeks that I'd thought we might be over Monster Man's anger issues. Sure, he'd had his share of being upset over the things most kids get upset about - sibling rivalry, not getting his way, etc - but he still seemed to have gotten rid of the anger that tends to build up and then come barreling out of him almost in a fit of rage.
He didn't feel really well all weekend. For the most part, he was fine. He'd get upset about something and then start laying around. Whenever he'd start laying down, upset, he'd spike a fever and start complaining of a headache and stomachache. My hubby used to do the same thing as a child, kind of as a stress reaction, and it didn't take us long to figure out that was what was going on with Monster Man this weekend. Once he got up and got moving, especially once he found something fun to do, his fever would drop and he'd be back to normal.
Between this and the time change, it was not much of a surprise that Monster Man was in such a bad mood this morning. He had napped quite a bit over the weekend when he wasn't feeling well, but he could not seem to get to sleep last night when he was sent to bed for the night. This morning, he dragged to get around and then had to be rushed to get out of the door before the bus arrived to pick him up.
He seemed to get upset over everything this morning. I told him to make sure he got his jacket, he yelled that he knew and then glared at me. I told him that he needed to make sure he had his backpack, he yelled that he already had it. At one point, he got mad and sat on the steps because I told him not to stand with the front door open (didn't want him letting out the dog). Then he refused to talk to me except to yell at me even more. I was proud of him, though, because I saw him pick something up to throw it, and then he caught himself and put it down before he could act on impulse.
Unless you've seen Monster Man at his worse, or unless you've lived with someone with the same anger issues as Monster Man, you might easily pass it off as just being typical moodiness in a boy his age. However, those who have experienced what I have with Monster Man realize that there is quite a difference between the two.
I am hoping he will be back to my happy little boy once he gets home from school today.
He didn't feel really well all weekend. For the most part, he was fine. He'd get upset about something and then start laying around. Whenever he'd start laying down, upset, he'd spike a fever and start complaining of a headache and stomachache. My hubby used to do the same thing as a child, kind of as a stress reaction, and it didn't take us long to figure out that was what was going on with Monster Man this weekend. Once he got up and got moving, especially once he found something fun to do, his fever would drop and he'd be back to normal.
Between this and the time change, it was not much of a surprise that Monster Man was in such a bad mood this morning. He had napped quite a bit over the weekend when he wasn't feeling well, but he could not seem to get to sleep last night when he was sent to bed for the night. This morning, he dragged to get around and then had to be rushed to get out of the door before the bus arrived to pick him up.
He seemed to get upset over everything this morning. I told him to make sure he got his jacket, he yelled that he knew and then glared at me. I told him that he needed to make sure he had his backpack, he yelled that he already had it. At one point, he got mad and sat on the steps because I told him not to stand with the front door open (didn't want him letting out the dog). Then he refused to talk to me except to yell at me even more. I was proud of him, though, because I saw him pick something up to throw it, and then he caught himself and put it down before he could act on impulse.
Unless you've seen Monster Man at his worse, or unless you've lived with someone with the same anger issues as Monster Man, you might easily pass it off as just being typical moodiness in a boy his age. However, those who have experienced what I have with Monster Man realize that there is quite a difference between the two.
I am hoping he will be back to my happy little boy once he gets home from school today.
Friday, March 11, 2011
He's a winner
Last night, Monster Man had his first ever science fair. For his project, he made a couple of hovercrafts. The first used a CD, a bottle cap (like the caps on a dish soap bottle), and a balloon. The second used a paper plate instead of the CD. He wanted to test which made the better hovercraft. As he suspected, the CD worked much better. It was a lot of fun putting the two on the floor and seeing how they traveled. The CD glided almost three feet from it's starting point, while the plate only moved about an inch.
The experiment went really well, and he did a great job with the display. When we went to the science fair last night, we got to see all the other science fair projects. This was for the gifted program in his school, and there were science fair projects from second grade, third grade, fourth grade, and fifth grade. There were so many great experiments, and it was fun checking out all the displays.
The best moment for Monster Man, though, came when he was awarded second place for the fifth grade level. I am one proud mom. He did so well!
Tuesday, March 8, 2011
Changing my own focus
One of the mothers on the National Tourette Syndrome Association's Facebook page posted a link last night to a blog post she had written on Giving up vs. Letting up. She originally wrote the article almost a year ago, but I think she shared it with us at the perfect time.
Lately, I've had a lot of concern over about Monster Man and the issues he has had alongside the Tourette Syndrome. Most of the time, we don't notice his tics anymore. However, we can't help but notice his anxiety, the recent problems with lying, and the fact that he's been so easily distracted the past few days. It's hard not to notice the anger he has been quick to express on more than one occasion. Some days, it has seemed like my little boy has been slipping away from me, and it's been easy to want to search for any possible way to bring him back to me.
I've mentioned before that Monster Man has told me that he doesn't want any medication to take away his TS. Instead, he's told me that God gave him TS to make him special. He likes his tics because they are part of what makes him who he is.
The article reminded me that the TS is just a part of who Monster Man is. He is so much more first. I just have to stay focused on the comic, the artist, the softball player, the wanna be Nascar driver, the hockey fan, the intelligent student, ...
Lately, I've had a lot of concern over about Monster Man and the issues he has had alongside the Tourette Syndrome. Most of the time, we don't notice his tics anymore. However, we can't help but notice his anxiety, the recent problems with lying, and the fact that he's been so easily distracted the past few days. It's hard not to notice the anger he has been quick to express on more than one occasion. Some days, it has seemed like my little boy has been slipping away from me, and it's been easy to want to search for any possible way to bring him back to me.
I've mentioned before that Monster Man has told me that he doesn't want any medication to take away his TS. Instead, he's told me that God gave him TS to make him special. He likes his tics because they are part of what makes him who he is.
The article reminded me that the TS is just a part of who Monster Man is. He is so much more first. I just have to stay focused on the comic, the artist, the softball player, the wanna be Nascar driver, the hockey fan, the intelligent student, ...
Sunday, March 6, 2011
Anxiety + Ice Hockey = Calmness?!
My mom pointed out to me something last night that I hadn't really taken notice of before. With all of Monster Man's issues with anxiety and nervousness, she said, you would think that all of the action of ice hockey would make him one very nervous little boy. I could see what she means - the puck is always flying from one side of the arena to the other, sometimes flying over the glass; the sport is very fast-paced, which can be hard to keep up with and can be very intense in itself; the players get into fights, oftentimes ramming other players against the glass. It really is an exciting, very active sport. It made her wonder how Monster Man can sit and watch the games without his anxiety getting the best of him.
It took me a moment to realize that ice hockey has the opposite effect on him. With all the games we've gone to, he's rarely expressed concern over anything other than the time we sat higher up than he was comfortable with. In fact, ice hockey seems to have a calming effect on him. It's my guess that all the action gives him something to place his focus on, something that serves as a distraction from the things that seem to bother him the most. He does tic quite often during hockey games, and there are times when it seems like the severity of the tics seems to coincide with the intensity of the game, but his fears seem to melt away completely during game time.
He recently asked me if I could find him a little league hockey team to play on. We're going to be busy with softball until the end of May, but I think that I might have to give in and either get him on a league or at least get him a few lessons so that we can see where it goes from there. As much as the thought of him out there in the middle of the action worries me, I still think it might be good for him.
It took me a moment to realize that ice hockey has the opposite effect on him. With all the games we've gone to, he's rarely expressed concern over anything other than the time we sat higher up than he was comfortable with. In fact, ice hockey seems to have a calming effect on him. It's my guess that all the action gives him something to place his focus on, something that serves as a distraction from the things that seem to bother him the most. He does tic quite often during hockey games, and there are times when it seems like the severity of the tics seems to coincide with the intensity of the game, but his fears seem to melt away completely during game time.
He recently asked me if I could find him a little league hockey team to play on. We're going to be busy with softball until the end of May, but I think that I might have to give in and either get him on a league or at least get him a few lessons so that we can see where it goes from there. As much as the thought of him out there in the middle of the action worries me, I still think it might be good for him.
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