What Growing up with Tourette Syndrome was like for me
I have been asked by several people what it was like growing up with
Tourette Syndrome. First a little back ground on what Tourette Syndrome is.
Tourette Syndrome is a neurological disorder that consists of tics. A tic is an uncontrollable movement or sound made for no apparent reason. No one knows what causes Tourette Syndrome but it is known to be hereditary and more comment in males than females. Growing up with Tourette Syndrome was not easy. Especially before I was diagnosed. I started experiencing tics when I was seven. My parents had no idea what was going on and despite the fact that I would tell them I could not control these things I for some reason was not believed. Like I would be making this up. My dad even went as far as to get the tape recorder and catch me on tape to play it back thinking hat playing it back would somehow embarrass me in to not doing these things. He even went as far as to imitate me when I would make sounds. A real mature thing for a father to do. Like that was actually going to work. In fact it made matters worse. He used to even threaten to get the oil can which he had to stop using that threat when I called him on it and told him I did not believe he was going to do that. All these things he has since apologized for. Also, at school I was threatened with detention if I did not stop these so called outbursts. Again, no one wanted to believe I had no control over it. Finally when I was nine our family doctor had read about Tourette Syndrome and I was given the diagnosis and finally proof that indeed I had no control over these movements and sounds. Like I would have made that up to begin with. Why my parents just could not believe that I had no contoll over it still escapes me. The tics as they are called usually start between the ages of seven and fourteen. May subside for a while and then come back for good. This happened in my case. They started around the age of seven, subsided for a while, and then came back with a vengeance. They usually begin with head rolling then work there way down your body and include arm movements, kicking, contorted movements, etc. Also sounds like blurting out words for no reason, guttural though noises, squealing, and just odd sounds in general. Also Obsessive compulsive disorder is common in Tourette Syndrome sufferers. I used to have the need to touch legs. Didn't matter what kind. Table, chairs, people. That last one used to cause problems. There were a few cases where I would grab a girls leg's on the school bus or just walking down the hallway. Nothing sexual about it. It could have easily been a table leg or a chair. It just happened to be that a fellow classmate was closer than the table. As you can imagine that got me in to a little trouble. My mom found out that I had grabbed some girls leg on the bus and I tried to explain to her that I had no control over it, this was after I had been diagnosed with Tourette Syndrome. But she did not want to hear that. All I got was," nononon. Your not using that as an excuse." So basically she did not want to hear that I had an obsessive compulsive problem with grabbing legs. Like I said. I was just as likely to grab a table or chair leg as a persons but all she heard from my sister was that I had grabbed someone's leg and did not want to be bothered with the fact that I might have a serious problem so it was never dealt with properly and had to go through my school years pretty much afraid to tell my mother anything related to Tourette Syndrome because I knew she would not believe it. Mainly because she did not want to except the fact that I had and still have some of the problems associated with it. So instead of getting the help I needed for that particular problem I ended up being labeled as a pervert by my class mates. and who can blame them. I would have thoght the same
thing about someone doing that if I had not been educated on Obsessive compulsive disorder. OCD could take up
a whole topic on this blog. What junior or senior high student in the 80's nwe what OCD was. Espeically
ones who lived in a small town. I'd say I had OCD and even adults would think that was a made up term so who
can blame my class mates for labeling me that. They did not know any better and because my mom did not want
to deal with that aspect I had to go through my teenage years thinking something was wrong with me and that
I must have been some kind of sick person. I now know that is not ture. OCD is nothing to beashamed of. I finally managed to overcome that one on my own since I obviously did not get any help from my mother.
The school I attended. Tonica Grade and High School was not much help either. There was a video at the time that schools cold show to educate fellow students about Tourette Syndrome so they would understand it better but the folks who ran the school did not want to be bothered with it. They never gave a good reason for not showing it but I'm guessing they thought if they did not educate anyone it would just go away. They also figured since I had Tourette Syndrome and am blind that I could not learn anything.
I do take medication to control it. There are several different kinds. The drug I take is Heldahl. It is a depressant and helps control the tics. It also has the effect of making you sleepy. It was always amusing to me when I would get tired a few hours after taking my haldahl and would lay on the couch in the living room and get yelled at by my dad or mom, who by the way is a nurse so she should have known that taking a trapualizer would cause drowsiness. duh. They would say things like, "must be nice to have time to just lay there." Like I said apparently they were too dumb to realize that if you take a depressant your probably going to get tired. Obviously not the brightest bulbs in the tree. My mother also had a hard time just ignoring the tics. She was constantly on my case around the house for making sounds. She would say things like, Can't you control that." Forgetting of course that I was in the privacy of my own home and if I was going to tic anywhere home should be the place for people to get off my back about it but for some reason she never quite figured that out. I recall one instant when I was twenty and sitting at the kitchen table and I made a few sounds and she starts talking about how she doesn't think I think. Not exactly sure what that was about and believe me by the time I was in my late teens I started telling her what I thought about her little comments. I would simply say that I'm in the privacy of the house and she had better learn to grow up and ignore it like everyone else has. She would then get pissed off and go off on a temper tantrum like a two year old child. She would then wonder why I did not have much respect for much of what she had to say., Gee I wonder why. Doesn't take a rocket scientist to figure that one out. Back on the school subject for a moment. My classmates weren't much better. I was called all kinds of names like "spas" that one would be chanted down the hallway by a bunch of students. and of course the teachers who clearly heard what was going on just turned there heads and pretended it was not going on. You would think educators would have more since than to ignore something that but I guess at Tonica they did not want to be bothered. I would constantly fall asleep in class because of the medication and would get yelled at. Again, haldahl is a depressant it is going to cause drowsiness and yelling at me is not going to change the side effect of the medication. But. The geniuses at Tonica were apparently not smart enough to figure this out.
Finally I met a teacher who actually figured out that I could learn something. Her name is Rose Casolari and she helped me realize that just because you are blind and have Tourette Syndrome dose not mean you can't learn. I managed to make the honor roll every quarter my senior year. Then I went off to collage and realized there are indeed people who don't judge you based on what disorders you might have. It was funny but my friends were better able to ignore my tics better than my own mother was. Something I made sure I pointed out to her whenever she would get on my case about my tics at home. Like I said. I would simply tell her to ignore them like everyone else does. Tourette Syndrome is not the only area where my mom had some trouble with. As I mentioned I am blind and for my school books I used a variable speed tape recorder. which has a speed control so you can slow down or speed up the tape to a comfortable speed to be able to best understand the material. I needed to listen to it at a slower speed. My mother used to have a fit about this. She would say,"NO ONE TALKS LIKE THAT." or CAN'T YOULISTEN TO THAT AT THE SAME SPEED EVERYONE ELSE DOES. I would try to explain to her that I needed it at the slower speed to understand what was being read but she would get even more mad and tell me to stop arguing whith her. I finally had to have an instructor call her and explain what the variable speed was for and then she finally shut her mouth about it. There are other stories about strange things that bother my mother but I'll save those for a different entry. I'm getting a little off topic here. Back to Tourette Syndrome. One thing I have always done is not care too much about what other people think. It goes back to school and being teased about it. If someone is bothered by my sounds or movements I personally don't care. If I have to tic then I do it. If someone does not like it, like my mother, then I personally don't care. Luckily most people don't notice or even seem bothered by it. My mother used to ask me, "don't you care what other people might think?" the answer is no. If I spent as much time as my mother thought I should on worrying what other people thought of my tics I would probably never have left the house. I figure, if someone is going to stare, I'll give them something to stare at. You may have noticed that I spent quite a bit of time criticizing my mother for the way she handled my tourette Syndrome but not too much about how my dad handled it. There is a reason. As I said at the beginning my dad apologized for his behavior. My mom never did. Someday she might but I'm not holding my breath, Hopefully I have given you a brief glimps in to what growing up with Tourette Syndrome was like for me and hopefully if you are a parent going through this with a child with Tourette Syndrome hopfully my examples above will help you to avoid the same mistakes that were made with me.
Tourette Syndrome. First a little back ground on what Tourette Syndrome is.
Tourette Syndrome is a neurological disorder that consists of tics. A tic is an uncontrollable movement or sound made for no apparent reason. No one knows what causes Tourette Syndrome but it is known to be hereditary and more comment in males than females. Growing up with Tourette Syndrome was not easy. Especially before I was diagnosed. I started experiencing tics when I was seven. My parents had no idea what was going on and despite the fact that I would tell them I could not control these things I for some reason was not believed. Like I would be making this up. My dad even went as far as to get the tape recorder and catch me on tape to play it back thinking hat playing it back would somehow embarrass me in to not doing these things. He even went as far as to imitate me when I would make sounds. A real mature thing for a father to do. Like that was actually going to work. In fact it made matters worse. He used to even threaten to get the oil can which he had to stop using that threat when I called him on it and told him I did not believe he was going to do that. All these things he has since apologized for. Also, at school I was threatened with detention if I did not stop these so called outbursts. Again, no one wanted to believe I had no control over it. Finally when I was nine our family doctor had read about Tourette Syndrome and I was given the diagnosis and finally proof that indeed I had no control over these movements and sounds. Like I would have made that up to begin with. Why my parents just could not believe that I had no contoll over it still escapes me. The tics as they are called usually start between the ages of seven and fourteen. May subside for a while and then come back for good. This happened in my case. They started around the age of seven, subsided for a while, and then came back with a vengeance. They usually begin with head rolling then work there way down your body and include arm movements, kicking, contorted movements, etc. Also sounds like blurting out words for no reason, guttural though noises, squealing, and just odd sounds in general. Also Obsessive compulsive disorder is common in Tourette Syndrome sufferers. I used to have the need to touch legs. Didn't matter what kind. Table, chairs, people. That last one used to cause problems. There were a few cases where I would grab a girls leg's on the school bus or just walking down the hallway. Nothing sexual about it. It could have easily been a table leg or a chair. It just happened to be that a fellow classmate was closer than the table. As you can imagine that got me in to a little trouble. My mom found out that I had grabbed some girls leg on the bus and I tried to explain to her that I had no control over it, this was after I had been diagnosed with Tourette Syndrome. But she did not want to hear that. All I got was," nononon. Your not using that as an excuse." So basically she did not want to hear that I had an obsessive compulsive problem with grabbing legs. Like I said. I was just as likely to grab a table or chair leg as a persons but all she heard from my sister was that I had grabbed someone's leg and did not want to be bothered with the fact that I might have a serious problem so it was never dealt with properly and had to go through my school years pretty much afraid to tell my mother anything related to Tourette Syndrome because I knew she would not believe it. Mainly because she did not want to except the fact that I had and still have some of the problems associated with it. So instead of getting the help I needed for that particular problem I ended up being labeled as a pervert by my class mates. and who can blame them. I would have thoght the same
thing about someone doing that if I had not been educated on Obsessive compulsive disorder. OCD could take up
a whole topic on this blog. What junior or senior high student in the 80's nwe what OCD was. Espeically
ones who lived in a small town. I'd say I had OCD and even adults would think that was a made up term so who
can blame my class mates for labeling me that. They did not know any better and because my mom did not want
to deal with that aspect I had to go through my teenage years thinking something was wrong with me and that
I must have been some kind of sick person. I now know that is not ture. OCD is nothing to beashamed of. I finally managed to overcome that one on my own since I obviously did not get any help from my mother.
The school I attended. Tonica Grade and High School was not much help either. There was a video at the time that schools cold show to educate fellow students about Tourette Syndrome so they would understand it better but the folks who ran the school did not want to be bothered with it. They never gave a good reason for not showing it but I'm guessing they thought if they did not educate anyone it would just go away. They also figured since I had Tourette Syndrome and am blind that I could not learn anything.
I do take medication to control it. There are several different kinds. The drug I take is Heldahl. It is a depressant and helps control the tics. It also has the effect of making you sleepy. It was always amusing to me when I would get tired a few hours after taking my haldahl and would lay on the couch in the living room and get yelled at by my dad or mom, who by the way is a nurse so she should have known that taking a trapualizer would cause drowsiness. duh. They would say things like, "must be nice to have time to just lay there." Like I said apparently they were too dumb to realize that if you take a depressant your probably going to get tired. Obviously not the brightest bulbs in the tree. My mother also had a hard time just ignoring the tics. She was constantly on my case around the house for making sounds. She would say things like, Can't you control that." Forgetting of course that I was in the privacy of my own home and if I was going to tic anywhere home should be the place for people to get off my back about it but for some reason she never quite figured that out. I recall one instant when I was twenty and sitting at the kitchen table and I made a few sounds and she starts talking about how she doesn't think I think. Not exactly sure what that was about and believe me by the time I was in my late teens I started telling her what I thought about her little comments. I would simply say that I'm in the privacy of the house and she had better learn to grow up and ignore it like everyone else has. She would then get pissed off and go off on a temper tantrum like a two year old child. She would then wonder why I did not have much respect for much of what she had to say., Gee I wonder why. Doesn't take a rocket scientist to figure that one out. Back on the school subject for a moment. My classmates weren't much better. I was called all kinds of names like "spas" that one would be chanted down the hallway by a bunch of students. and of course the teachers who clearly heard what was going on just turned there heads and pretended it was not going on. You would think educators would have more since than to ignore something that but I guess at Tonica they did not want to be bothered. I would constantly fall asleep in class because of the medication and would get yelled at. Again, haldahl is a depressant it is going to cause drowsiness and yelling at me is not going to change the side effect of the medication. But. The geniuses at Tonica were apparently not smart enough to figure this out.
Finally I met a teacher who actually figured out that I could learn something. Her name is Rose Casolari and she helped me realize that just because you are blind and have Tourette Syndrome dose not mean you can't learn. I managed to make the honor roll every quarter my senior year. Then I went off to collage and realized there are indeed people who don't judge you based on what disorders you might have. It was funny but my friends were better able to ignore my tics better than my own mother was. Something I made sure I pointed out to her whenever she would get on my case about my tics at home. Like I said. I would simply tell her to ignore them like everyone else does. Tourette Syndrome is not the only area where my mom had some trouble with. As I mentioned I am blind and for my school books I used a variable speed tape recorder. which has a speed control so you can slow down or speed up the tape to a comfortable speed to be able to best understand the material. I needed to listen to it at a slower speed. My mother used to have a fit about this. She would say,"NO ONE TALKS LIKE THAT." or CAN'T YOULISTEN TO THAT AT THE SAME SPEED EVERYONE ELSE DOES. I would try to explain to her that I needed it at the slower speed to understand what was being read but she would get even more mad and tell me to stop arguing whith her. I finally had to have an instructor call her and explain what the variable speed was for and then she finally shut her mouth about it. There are other stories about strange things that bother my mother but I'll save those for a different entry. I'm getting a little off topic here. Back to Tourette Syndrome. One thing I have always done is not care too much about what other people think. It goes back to school and being teased about it. If someone is bothered by my sounds or movements I personally don't care. If I have to tic then I do it. If someone does not like it, like my mother, then I personally don't care. Luckily most people don't notice or even seem bothered by it. My mother used to ask me, "don't you care what other people might think?" the answer is no. If I spent as much time as my mother thought I should on worrying what other people thought of my tics I would probably never have left the house. I figure, if someone is going to stare, I'll give them something to stare at. You may have noticed that I spent quite a bit of time criticizing my mother for the way she handled my tourette Syndrome but not too much about how my dad handled it. There is a reason. As I said at the beginning my dad apologized for his behavior. My mom never did. Someday she might but I'm not holding my breath, Hopefully I have given you a brief glimps in to what growing up with Tourette Syndrome was like for me and hopefully if you are a parent going through this with a child with Tourette Syndrome hopfully my examples above will help you to avoid the same mistakes that were made with me.
posted by zman977 at 4:34 AM
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