There is one comment that seems to be heard by just about every single one of us that has a child with TS. At some point or another, quite often within the first few months of diagnosis, it seems like we all hear the words "I don't see it". While the words may be quite harmless, there are other times when the words can end up being more hurtful. Often times, it seems those words come at a time when we need the support of our family and friends, and rather than getting that support, we instead hear them casting their doubt.
I think there are a number of factors that can come into play as to whether or not someone "sees it." Those that only see the child once in a while may just be seeing him at times when tics are waning rather than waxing (at a calm time rather than a time when tics are more out of control). Another factor can be whether or not the child is comfortable around the person that doesn't see it. Oftentimes, the child will hold in the tics until they are more comfortable, leading to an overabundance of tics once the child is once again in his comfort zone. There is also the possibility that those that see the child regularly aren't seeing the tics because they've come to be typical behavior for the child, leading to the tics going unnoticed.
Mothers, on the other hand, are often more tuned in to the things that affect our children. We have a sense when something is wrong, when there is something more than just habitual behaviors going on. We tend to have a better understanding that our children need our help to overcome the obstacles that they are facing ahead of them. Just because you don't see it doesn't mean that we don't see it. When we do come to that realization, when we accept that our children are different, we need the support of those around us. We don't want to hear the doubts cast our way. We don't want to have to explain what or why or how... We just want to know that we can turn to our friends and family for support. Most importantly, we want to know that you accept our children for who they are, not for who you want them to be.
Tuesday, July 24, 2012
Friday, July 20, 2012
Adjustment Period
Monster Man has been going through a bit of an adjustment period. About three weeks ago, he started taking Clonidine to help control some of his tics. The hope is that by controlling the severity of his tics, we might be able to control some of the excess stress that builds up and leads to a rage episode, resulting in better control of his rage. We were told that it would take over two weeks before we start seeing results. So far, we're not sure if the results we're seeing are an improvement or not. Some of his tics have seemed to decrease, but others seem to have increased. He also seems a little more 'jumpy'. His anxiety level is higher, but we're not sure if that is related to the Clonidine or not.
This past Saturday, we left for a camping trip to the mountains. Sometimes, he seemed much better than he previously would have. In the past, he's been very nervous going over the mountain roads, afraid he'd fall off. He didn't seem to have those fears this time. However, he was jumping a little more at noises he heard; was very sensitive emotionally, sure we were yelling at him if we got onto him even the slightest bit (calmly, even) for misbehaving; and he started ticcing uncontrollably one night while we were out to eat - worse than we've ever seen him tic. He had gotten upset because he was ticcing a little and noticed someone was watching him. The stress from being stared at caused him to start ticcing 100 times worse. I took him outside the restaurant, where I held him in my arms while he cried until he was able to calm down enough to get back in the restaurant and take his anxiety medication (Hydroxyz HCL). A few minutes later, he was happily drawing again. Seeing him struggle like that was so hard on both me and my husband.
We haven't seen any further episodes like he had that night, but we're keeping an eye out to see if he has any other signs of worsening. We're also keeping our eye out for signs of improvement. We're really hoping that this medication will help improve Monster Man's symptoms. He'll be heading for some therapy soon, too (I wanted to hold off until we know how the medication is helping him so that we can include that information in what we talk to the next doctor about), and we're hoping we might start seeing more signs of our happy-go-lucky little boy again.
This past Saturday, we left for a camping trip to the mountains. Sometimes, he seemed much better than he previously would have. In the past, he's been very nervous going over the mountain roads, afraid he'd fall off. He didn't seem to have those fears this time. However, he was jumping a little more at noises he heard; was very sensitive emotionally, sure we were yelling at him if we got onto him even the slightest bit (calmly, even) for misbehaving; and he started ticcing uncontrollably one night while we were out to eat - worse than we've ever seen him tic. He had gotten upset because he was ticcing a little and noticed someone was watching him. The stress from being stared at caused him to start ticcing 100 times worse. I took him outside the restaurant, where I held him in my arms while he cried until he was able to calm down enough to get back in the restaurant and take his anxiety medication (Hydroxyz HCL). A few minutes later, he was happily drawing again. Seeing him struggle like that was so hard on both me and my husband.
We haven't seen any further episodes like he had that night, but we're keeping an eye out to see if he has any other signs of worsening. We're also keeping our eye out for signs of improvement. We're really hoping that this medication will help improve Monster Man's symptoms. He'll be heading for some therapy soon, too (I wanted to hold off until we know how the medication is helping him so that we can include that information in what we talk to the next doctor about), and we're hoping we might start seeing more signs of our happy-go-lucky little boy again.
Tuesday, June 5, 2012
No one "at fault"
I am sorry that I haven't been able to keep up with the daily blog posts that I started out writing for Tourette Syndrome Awareness Month. Life has gotten in the way, as it tends to do sometimes. We've had trips to the pool, birthday parties, and softball tournaments filling up our days since school has gotten out, and there hasn't been much time for me to sit down and write. I did want to take a little time to write about something that has been weighing on my mind, though.
Tourette Syndrome can be a spontaneous thing, appearing out of nowhere in a patient that has no known family history of Tourette Syndrome. Sometimes, it can come on with strep infections, in which case it would likely be PANDAS. In many cases, however, there is a genetic link. Heredity does seem to play a role in many TS cases. However, this does not mean that anyone is "at fault" for their child having Tourette Syndrome.
Recently, a relative made a comment about which side of the family was "at fault" for Monster Man's TS. This came after another relative started showing signs of having TS, as well. The comment really grated on my nerves.
The truth is, no one is "at fault" for Tourette Syndrome. There is no one to blame, and there should be no one to blame. Sure, TS has its ups and downs; but doesn't most of life?! While it can take some adjusting to, and the comorbids can sometimes be hard to deal with, Tourette Syndrome can also be looked at as a gift. That's exactly how we choose to look at it.
Thanks to Monster Man's diagnosis, our eyes have been opened to so many things that we never would've known. We still would've fallen into that trap that the media wants us to believe, that TS is just the "cussing disease". We wouldn't have come to know that there is so much more to TS, that coprolalia only occurs in a small percentage of cases. We wouldn't have come to meet so many new families that are experiencing the same daily struggles (and triumphs) that we are experiencing, friends we've made online and through Camp Twitch and Shout. We wouldn't be challenged to work so hard to fight for acceptance for other children with tics even worse than Monster Man's.
Most importantly, though, is the fact that Monster Man wouldn't be the person that he is without his TS. He wouldn't be the 'quirky' little boy that we've watched grow up, always teaching us to think outside the box. He wouldn't be the little boy that taught us to answer every "Why does he do that?" with "Because he's Monster Man" when we had no explanation. He wouldn't be the boy that taught us that being so different can be so much more fun.
We are blessed to have Monster Man just the way he is, and he feels blessed to have been given the gift of TS to open his world up to a whole new group of people that he wouldn't have known otherwise. He has told us that he thinks that his highly vivid imagination comes from his brain working differently (something I've heard from other ticcers as well). We do not feel that there is someone to "blame"; but if there was, we'd like to thank him or her!
Tourette Syndrome can be a spontaneous thing, appearing out of nowhere in a patient that has no known family history of Tourette Syndrome. Sometimes, it can come on with strep infections, in which case it would likely be PANDAS. In many cases, however, there is a genetic link. Heredity does seem to play a role in many TS cases. However, this does not mean that anyone is "at fault" for their child having Tourette Syndrome.
Recently, a relative made a comment about which side of the family was "at fault" for Monster Man's TS. This came after another relative started showing signs of having TS, as well. The comment really grated on my nerves.
The truth is, no one is "at fault" for Tourette Syndrome. There is no one to blame, and there should be no one to blame. Sure, TS has its ups and downs; but doesn't most of life?! While it can take some adjusting to, and the comorbids can sometimes be hard to deal with, Tourette Syndrome can also be looked at as a gift. That's exactly how we choose to look at it.
Thanks to Monster Man's diagnosis, our eyes have been opened to so many things that we never would've known. We still would've fallen into that trap that the media wants us to believe, that TS is just the "cussing disease". We wouldn't have come to know that there is so much more to TS, that coprolalia only occurs in a small percentage of cases. We wouldn't have come to meet so many new families that are experiencing the same daily struggles (and triumphs) that we are experiencing, friends we've made online and through Camp Twitch and Shout. We wouldn't be challenged to work so hard to fight for acceptance for other children with tics even worse than Monster Man's.
Most importantly, though, is the fact that Monster Man wouldn't be the person that he is without his TS. He wouldn't be the 'quirky' little boy that we've watched grow up, always teaching us to think outside the box. He wouldn't be the little boy that taught us to answer every "Why does he do that?" with "Because he's Monster Man" when we had no explanation. He wouldn't be the boy that taught us that being so different can be so much more fun.
We are blessed to have Monster Man just the way he is, and he feels blessed to have been given the gift of TS to open his world up to a whole new group of people that he wouldn't have known otherwise. He has told us that he thinks that his highly vivid imagination comes from his brain working differently (something I've heard from other ticcers as well). We do not feel that there is someone to "blame"; but if there was, we'd like to thank him or her!
Wednesday, May 23, 2012
The Last Day of School
Today is day 9 of Tourette Syndrome Awareness Month. It also happens to be the last day of school for Monster Man, his siblings, and their classmates. What does this mean for kids with TS? As with any other kid, it means an incredible amount of excitement. However, excitement (just like stress) can lead to an overabundance of tics.
The truth is, tics tend to increase in both number and severity during periods of high stress or excitement. It's almost as if the ticcer's body doesn't know how to handle the extra stimuli, and thus goes into overdrive. In Monster Man's case, he's been doing this half shoulder-shrug/half head-shake thing, which he only does during high excitement or high stress periods, and he's been doing this multiple times a minute. Sometimes, he doesn't even notice he's doing it. Other times, he's annoyed because he feels like he can't stop doing it.
Sadly, the high levels of stress and excitement can also lead to increased problems with other issues, like irritability that can lead to a rage episode. When just the right trigger comes along, he can become like a stick of dynamite, exploding when the lit fuse finally reaches the stick. As if he's suddenly been triggered, he just explodes, losing control of his emotions.
He was put to the test just a couple of days ago at school. His teachers have all recently told me that they've never seen his lose his temper or get anywhere close to a rage episode, but they apparently spoke too soon. With all the excitement of the end-of-the-year activities, he's been building up all the extra emotion inside him. During field day, a classmate poured water over him, and he immediately responded by putting the kid in a headlock. Thankfully the episode didn't go past there, as it very easily could have. The teachers could have seen much worse had he not been able to regain his self-control as fast as he did.
It concerns me greatly to know that he did start to lose his temper at school, that a trigger set him off outside his usual comfort zone at home. This only proves to me even more that I am doing the right thing in taking him back to the neurologist next month to see about getting him on a medication that can help him better control some of the issues he has.
The truth is, tics tend to increase in both number and severity during periods of high stress or excitement. It's almost as if the ticcer's body doesn't know how to handle the extra stimuli, and thus goes into overdrive. In Monster Man's case, he's been doing this half shoulder-shrug/half head-shake thing, which he only does during high excitement or high stress periods, and he's been doing this multiple times a minute. Sometimes, he doesn't even notice he's doing it. Other times, he's annoyed because he feels like he can't stop doing it.
Sadly, the high levels of stress and excitement can also lead to increased problems with other issues, like irritability that can lead to a rage episode. When just the right trigger comes along, he can become like a stick of dynamite, exploding when the lit fuse finally reaches the stick. As if he's suddenly been triggered, he just explodes, losing control of his emotions.
He was put to the test just a couple of days ago at school. His teachers have all recently told me that they've never seen his lose his temper or get anywhere close to a rage episode, but they apparently spoke too soon. With all the excitement of the end-of-the-year activities, he's been building up all the extra emotion inside him. During field day, a classmate poured water over him, and he immediately responded by putting the kid in a headlock. Thankfully the episode didn't go past there, as it very easily could have. The teachers could have seen much worse had he not been able to regain his self-control as fast as he did.
It concerns me greatly to know that he did start to lose his temper at school, that a trigger set him off outside his usual comfort zone at home. This only proves to me even more that I am doing the right thing in taking him back to the neurologist next month to see about getting him on a medication that can help him better control some of the issues he has.
Tuesday, May 22, 2012
Comorbid Conditions & Tourette Syndrome
Today is day 8 of Tourette Syndrome Awareness Month, which (as I've stated in a previous post) runs from May 15 to June 15. I want to take the opportunity today to share a little about comorbid conditions. I've used the term many times in the past, yet I've still received a lot of question about the term "comorbid". It seems that what throws most people off is the word "morbid", which is most commonly thought of as "gruesome" or "unwholesomely gloomy". Dictionary.com gives four definitions for the word "morbid", including the two more common definitions I just mentioned. However, it can also mean "affected by, caused by, causting, or characteristic of disease" or "pertaining to diseased parts". In the case of co-morbid conditions, it would be more the "affected by,..." definition.
Comorbid condition of Tourette Syndrome can include Obsessive Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD), bipolar, depression, anxiety, and rage. They can also include learning disorders, such as dyslexia and dysgraphia. In many cases, these comorbid conditions are actually harder on the individual with TS than the actual tics are.
It is important to remember that these can appear together but do not always. Some people may have one or two comorbids with their TS, some may have none, some may have many. Like the difference in tics, it seems that you can have a room full of ticcers and not see a completely matching list of comorbids between two individuals. It is also important to realize that just because a child exhibits one of the comorbids, it doesn't mean that the child has Tourette Syndrome. A child with ADHD could just have ADHD. A child with OCD could just have OCD. These are all conditions that can occur on their own or along with other conditions.
Tourettes in the Classroom
I missed my post for day 7 of Tourette Syndrome Awareness Month, so I decided I'd do a quick one this morning to make up for it. This past school year has been filled with struggles for Monster Man at school. Through it all, though, he's managed to maintain his grades to mostly A's and B's (one very high C). It hasn't been easy, and he's faced many challenges along the way, but that's how it tends to be for students with Tourette Syndrome.
Tourette Syndrome can be hard enough to live with at home, let alone to be in a classroom setting, with students that can see (and possibly make fun of) the tics, teachers who think the student is being disruptive, and the added stress of trying to keep up with the lessons while controlling the urge to tic. So many co-morbid issues add to these problems, as well, such as ADHD and disgraphia. The classroom setting can be very stressful indeed for students with Tourette Syndrome.
The Tourette Syndrome Association offers many resources to help educators understand and prepare for students with Tourette Syndrome. As parents, it can help make our children's classroom lives easier if we provide their teachers with some of these materials. It would also be helpful for schools to keep some of these materials (many of which can be found for free or at a very low cost) on hand to prepare not only for current students with TS, but for any new students that might come along or anyone that might get diagnosed. Being prepared can make the classroom life so much easier for everyone involved.
Tourette Syndrome can be hard enough to live with at home, let alone to be in a classroom setting, with students that can see (and possibly make fun of) the tics, teachers who think the student is being disruptive, and the added stress of trying to keep up with the lessons while controlling the urge to tic. So many co-morbid issues add to these problems, as well, such as ADHD and disgraphia. The classroom setting can be very stressful indeed for students with Tourette Syndrome.
The Tourette Syndrome Association offers many resources to help educators understand and prepare for students with Tourette Syndrome. As parents, it can help make our children's classroom lives easier if we provide their teachers with some of these materials. It would also be helpful for schools to keep some of these materials (many of which can be found for free or at a very low cost) on hand to prepare not only for current students with TS, but for any new students that might come along or anyone that might get diagnosed. Being prepared can make the classroom life so much easier for everyone involved.
Sunday, May 20, 2012
Driving with Tourettes
Today is day 6 of Tourette Syndrome Awareness Month. Since the weekend was incredibly busy for me, I figured I'd stick with a smaller post for today. I was thinking about a question that someone recently asked me, and I thought I'd answer her question here in case anyone else has asked that same question. "Can someone with Tourette Syndrome drive?"
In most cases, the answer to that question is yes. Tourette Syndrome in itself is not a cause for someone being unable to drive. There really isn't much reason as to why someone with TS couldn't drive, unless there are other medical issues that are co-existing along with the TS, or unless the tics make it too hard to concentrate on the road or drive safely. In fact, I've talked to several people that have said the concentration it takes to drive is a good distraction from the tics, giving the ticcer a break from their usual tics. One person I talked to said that they wouldn't tic while driving, but would have to release their tics (in this person's case, severe head shaking) at every red light and stop sign. As soon as he was able to drive again, the tics would be controlled until the next chance to stop.
Not only can people with Tourette Syndrome drive a car, but they can also race a car. I've mentioned before about the racing record that was accomplished by Trey Shannon for TS Awareness. I may also have mentioned that NASCAR drivers Kenny Wallace and Steve Wallace both have Tourette Syndrome. They offer hope to ticcers like Monster Man who have dreams of one day racing a car themselves.
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