Having any sort of disorder can make a person have to grow up a little bit faster. I remember being a little girl, first diagnosed, and not having a care in the world because I was not yet aware of people's prejudice against being different. I knew it on a surface level, but I didn't really understand it. I feel like sometimes as adults we can become jaded due to not only negative memories from our childhood, in which we have come to see a situation for what it was, but also to things we experience once that adult awareness comes in. It's easier to get hurt and to feel anger or resentment towards others. Compound that with all the other things that come to our attention as we traverse through adulthood.
It's so easy for us to forget that not everything is personal and that people's ignorance and fear of the unknown is often what rules their cruelty. When we were children, hopefully, our parents took care of any issues we had and stood up or spoke out for us anytime we encountered antagonism or animosity from peers or elders. However, once we become adults we have to become our own advocates and that's hard. We may still have assistance from parents, friends, or colleagues, but mostly it is up to us.
So how do we do it? Not everyone has the innate ability to confront someone who has committed a wrong against them or a loved one. Some are pacifists, some are passive-aggressive, and others still just weren't taught how to stand up for themselves. I am a pacifist and sometimes when I am confronted with situations such as these I get nervous, shaky, and/or forget what I want, need, or should say. The key is to take baby steps. Start with little things such as calmly telling someone that what they said was inappropriate. Also, make sure that you have an advocate go with you or practice what you would say in certain situations or what you are going to say if a situation has arisen where you need to speak up. Note: It's okay to have cue cards to help you remember what to say. Don't allow the person to interrupt you and if they do, persevere. Dealing with these things comes easier with time, practice, and maturity.
Lastly, it's important to remember that even if you do have to confront someone, you don't have to do it in an insulting or threatening manner. It can be done without screaming and yelling and spoken in a calm, yet firm voice.
November 12, 2013
September 18, 2013
Person > Label
Each and every case of Tourettes is unique, but we all have similarities, a connection. Sometimes I feel like I want to be separated from TS and OCD, to just be me without having to worry about what I look like when I'm ticcing in public or what people think when I make funny noises or get upset over something that may seem trivial to them, but is part of what makes my day go on.
I just started a new job and it's hard enough being someone who isn't traditional by nature, because people don't accept different and they're intimidated by it. So it makes it that much harder having to tic in front of them. Every time I go into a new setting I have to go through the steps.:
-Start with facial tics, because they're less noticeable.
- Next a few neck and arm "stretching" tics, because they look natural right?
-Then most of my quiet resolve dissolves into upper body shaking tics and some lower body if I'm standing.
-Then come the ones that may seem a little more embarrassing or scary looking: sticking my tongue out or hitting my arms against my sides.
-Finally, the pièce de résistance.......: What do I do about my vocal tics??? I don't get them very often, but when I do, there's nothing subtle about them. Ever since I've grown up I think I've struggled more with those and have yet to come to terms with them. I developed a little bit of a stutter now and again and I do bird calls and random noises.
I recently started a new job and I'm in this 15x20 room training with over a dozen other people and I tic in front of them all the time. I went through all the steps, only treading lightly on that last one, but I've done it. I tic and I sign in front of them and I don't care. It feels so good and it makes me feel like I'm just a person, not a label. When I'm able to do that, I can get out of my own head and see other people and things. Although I have to be pro-active in said process too, I couldn't do it without God and my family.
Check out this guy on X-Factor who has TS and OCD. Here's the article and video. It takes a great support system to have the courage to do what he did. :)
I just started a new job and it's hard enough being someone who isn't traditional by nature, because people don't accept different and they're intimidated by it. So it makes it that much harder having to tic in front of them. Every time I go into a new setting I have to go through the steps.:
-Start with facial tics, because they're less noticeable.
- Next a few neck and arm "stretching" tics, because they look natural right?
-Then most of my quiet resolve dissolves into upper body shaking tics and some lower body if I'm standing.
-Then come the ones that may seem a little more embarrassing or scary looking: sticking my tongue out or hitting my arms against my sides.
-Finally, the pièce de résistance.......: What do I do about my vocal tics??? I don't get them very often, but when I do, there's nothing subtle about them. Ever since I've grown up I think I've struggled more with those and have yet to come to terms with them. I developed a little bit of a stutter now and again and I do bird calls and random noises.
I recently started a new job and I'm in this 15x20 room training with over a dozen other people and I tic in front of them all the time. I went through all the steps, only treading lightly on that last one, but I've done it. I tic and I sign in front of them and I don't care. It feels so good and it makes me feel like I'm just a person, not a label. When I'm able to do that, I can get out of my own head and see other people and things. Although I have to be pro-active in said process too, I couldn't do it without God and my family.
Check out this guy on X-Factor who has TS and OCD. Here's the article and video. It takes a great support system to have the courage to do what he did. :)
July 22, 2013
Mimicry: the Finest Form of Flattery
According to IMDb Front of the Class is about: Despite suffering from Tourette's syndrome, Brad Cohen (James Wolk) fulfills his lifelong dream of becoming a teacher in this touching Hallmark Hall of Fame production based on a true story that shines a light on this often misunderstood disorder. As Cohen grows up, he must face friends and classmates who don't realize that he sometimes cannot control his outbursts, and a father (Treat Williams) who seems unwilling to accept his son's condition.
Despite my concerns I was excited to watch the film. It was about someone with TS and how he had used determination and fortitude to accomplish a goal that many had thought impossible. Don't worry, no spoilers here! While to the experienced eye of someone with TS there were a couple discrepancies, James Wolk's portrayal of Mr. Cohen's case of TS was amazing and looked completely unrehearsed.
While watching the Front of the Class, I experienced several emotions. Empathy, because I understood some of what he was going through, happiness during the good and funny parts (of course), and some stress. Even though, for the most part, I was engrossed while the film played, when the commercials came on, that's when the tics along with built up stress occurred. I had bad vocal tics like squeaking, yelling, and a sort of loud whining. The motors tics I experienced surprised me the most. I had several head shaking tics and one where (I was sitting on my bed at the time) I would fall over on my side and get back up repeatedly.
Part of having this disorder includes the brain's ability to record observations and events and transpose parts of them into the form of a vocal and/or motor tic. That means a person can develop a tic sequence simply from observing others whether from a movie or real-time events. This doesn't have to limit what a person with TS watches or their life experience as a whole. Just keep in mind that if something has any sort of impact on you, it may translate into a tic later on. In this case it's important to remember that tic cycles are temporary and even though there may be times when one has to avoid a certain situation, it doesn't mean it's permanent.
June 21, 2013
Laugh Out Loud
So what tics do you have???
Ever have one of those laugh or cry moments? Tourette Syndrome can be frustrating, overwhelming, maddening, etc. but it can also be funny or silly. I've had people ask me this question soooo many times and I'm thinking: Where do I start? Do you want the manual? I love the above meme because it illustrates the answer to this question so perfectly. What I usually do when asked that sort of question is just rattle off the first dozen or so that come to mind.
So the meme out there these days for all of us Touretters is Tourette's Toucan! Some of them are funny or awkward, some are just irritants that we experience, and mostly all of them are relatable. If you click on the link attached to the site name and click on "Memes only" in the bottom right hand corner, you can take a look at all of the ones posted so far, but for today I'm going to name a few moments of my own. If you don't have TS or don't know a whole lot about it, some of the memes may be confusing, so feel free to ask!
I remember a time, not long after I was diagnosed, when I was lying on the couch having what's called a complex-motor tic. I was having a tic where my entire body was periodically jerking and shaking every which way. At one point I ticced so hard I fell off the couch laughing. Thinking back on it, the whole scene was kind of funny, but having those complex tics are not always fun, they can be downright aggravating and frustrating.
In fact, I've had many moments where I break down and cry because my tics are so overwhelming and "in my face" that I don't feel like I can cope on my own. I hope that everyone out there has some sort of support group or confidante they can lean on and draw strength from when their own is waning. The important thing to remember is that those hard tic phases don't last and the cycle will calm down and change just like any other. Lastly, please remember one can always contact the Tourette Syndrome Association when at a loss for answers. This is why promoting awareness and understanding is so essential, so that in the future there will be more and more resources available to the TS population.
June 16, 2013
Happy Father's Day!!!
It's rainy and chilly outside. Unusual weather for this time of year in the Northern Panhandle, but I don't mind. I've mentioned several times how my mum has been a great help to me throughout my years in dealing with Tourettes. I've talked about how she's supported me, guided me, taught me to stand up for myself, etc, but today I want to talk about my dad.
Whatever mysterious gene that Tourette Syndrome comes on came from his side of the family, along with OCD. Several of the oddities that I've experienced over the years, he's gone through himself. Having TS can be very lonely when you're the only known one in the family who has it, so it's kind of cool when we find something else in common. Throughout my college career, as I've mentioned before, I've experienced some prejudices that I didn't know how to or couldn't deal with on my own. My dad has come to class with me when I felt like I couldn't be alone, and he's gone to bat for me when someone wouldn't give me the accomadations I needed or didn't seem to "get" that having Tourettes can be difficult and can sometimes make certain everyday activities hard to deal with such as: ticcing in public, standing or sitting still for long periods of time, being quiet, sensory processing, etc.
My dad, my mum, and various other peoples have been responsible for the on-going process of learning to be comfortable with myself and my tics and being able to stand up for myself. I don't believe in being quiet or sitting on the sidelines while someone gives me a proverbial beating. I don't always know what to say, but, chances are, someone else does. The important thing to remember is each time someone sticks up for me and/or I stick up for myself, and promote Tourette Syndrome awareness, I've gained another notch in my belt of advocation. Being an advocate can be something as simple as telling someone you have Tourettes, because you're showing that you're not ashamed of who you are.
I had one incident at a place of employment when I was a sophomore in college where a supervisor got upset with me for calling home because my tics were so bad that I couldn't be still for a second and I didn't know what to do. This was also during a time when I was less than okay with expressing my tics in public. When I tried to explain that I had obtained permission to call and that I had TS, he refused to listen and told me to go home. Try as I might, I couldn't hold back my tears. My mum who was on the phone this whole time listening to the exchange told my dad what was happening and within fifteen minutes he was up there speaking on my behalf to the man who had committed the transgression. If it hadn't been for my dad that day, I don't know what I would have done.
In closing, I just want to remind everyone that everyone out there who has Tourette Syndrome or knows someone with does is covered under that American Disabilities Act. That means no one is allowed to discriminate against you because of your disability.
Whatever mysterious gene that Tourette Syndrome comes on came from his side of the family, along with OCD. Several of the oddities that I've experienced over the years, he's gone through himself. Having TS can be very lonely when you're the only known one in the family who has it, so it's kind of cool when we find something else in common. Throughout my college career, as I've mentioned before, I've experienced some prejudices that I didn't know how to or couldn't deal with on my own. My dad has come to class with me when I felt like I couldn't be alone, and he's gone to bat for me when someone wouldn't give me the accomadations I needed or didn't seem to "get" that having Tourettes can be difficult and can sometimes make certain everyday activities hard to deal with such as: ticcing in public, standing or sitting still for long periods of time, being quiet, sensory processing, etc.
My dad, my mum, and various other peoples have been responsible for the on-going process of learning to be comfortable with myself and my tics and being able to stand up for myself. I don't believe in being quiet or sitting on the sidelines while someone gives me a proverbial beating. I don't always know what to say, but, chances are, someone else does. The important thing to remember is each time someone sticks up for me and/or I stick up for myself, and promote Tourette Syndrome awareness, I've gained another notch in my belt of advocation. Being an advocate can be something as simple as telling someone you have Tourettes, because you're showing that you're not ashamed of who you are.
I had one incident at a place of employment when I was a sophomore in college where a supervisor got upset with me for calling home because my tics were so bad that I couldn't be still for a second and I didn't know what to do. This was also during a time when I was less than okay with expressing my tics in public. When I tried to explain that I had obtained permission to call and that I had TS, he refused to listen and told me to go home. Try as I might, I couldn't hold back my tears. My mum who was on the phone this whole time listening to the exchange told my dad what was happening and within fifteen minutes he was up there speaking on my behalf to the man who had committed the transgression. If it hadn't been for my dad that day, I don't know what I would have done.
In closing, I just want to remind everyone that everyone out there who has Tourette Syndrome or knows someone with does is covered under that American Disabilities Act. That means no one is allowed to discriminate against you because of your disability.
May 29, 2013
Here's The Deal
Take it from someone who has been there. Seeing someone tic can often look/be funny, silly, unnerving, weird, etc. Sometimes I'm not even sure what to make of myself, especially if I'm dealing with new tics or a new set of tics. Every time I go out in public I play this mental game of battleship. How bad are my tics today? How much am I able to tic in front of people. Do I let people see my old tics, let alone new ones? What happens if I have a vocal tic? All this and OCD too??? It can be exhausting.
People don't always know how to approach someone with Tourettes or what to do if they see a person ticcing and that's understandable. It's nothing to be ashamed of, because often I, and others like me, am often more frustrated or confused then anyone looking in from the outside. So, what does one do when confronted with someone who has TS?
1. When talking to someone with TS, don't be afraid to look at them when they're ticcing. You're having a conversation, so it's perfectly acceptable to make eye contact.
2. Don't be afraid to ask if you are genuinely curious. Say something like, "Excuse me, I couldn't help but notice, do you have Tourettes?"
3. Do NOT ask ask them to stop ticcing. We literally cannot help it.
4. Remember that not everyone with TS is going to start spouting profanities. -Only 10% do and even they aren't guaranteed
5. Someone with TS needs to be included in groups, not excluded or isolated because they're different. Make it clear that they're welcome.
6. People with TS are naturally tense for a number of reasons. Do what you can to make them feel at ease.
7. Don't single someone out who has TS by pitying them or continuously asking them if they're okay.
8. Everyone has problems or something they need help with. If someone with TS is asking for help or special consideration, assume it's because they really need it, not because they just want attention.
9. If you're friends with someone with TS, learn to be accustomed to their tics, rather than constantly being startled or disconcerted. Body language alone speaks volumes. If we constantly have to worry about how our tics are going to affect whomever we are with, it puts us in a defensive position that prohibits us from relaxing and being ourselves.
10. Learn to accept others as they are with all their unique differences and challenges. Being able to coexist with others in a peaceful and meaningful way is invaluable.
This picture is not my property.
People don't always know how to approach someone with Tourettes or what to do if they see a person ticcing and that's understandable. It's nothing to be ashamed of, because often I, and others like me, am often more frustrated or confused then anyone looking in from the outside. So, what does one do when confronted with someone who has TS?
1. When talking to someone with TS, don't be afraid to look at them when they're ticcing. You're having a conversation, so it's perfectly acceptable to make eye contact.
2. Don't be afraid to ask if you are genuinely curious. Say something like, "Excuse me, I couldn't help but notice, do you have Tourettes?"
3. Do NOT ask ask them to stop ticcing. We literally cannot help it.
4. Remember that not everyone with TS is going to start spouting profanities. -Only 10% do and even they aren't guaranteed
5. Someone with TS needs to be included in groups, not excluded or isolated because they're different. Make it clear that they're welcome.
6. People with TS are naturally tense for a number of reasons. Do what you can to make them feel at ease.
7. Don't single someone out who has TS by pitying them or continuously asking them if they're okay.
8. Everyone has problems or something they need help with. If someone with TS is asking for help or special consideration, assume it's because they really need it, not because they just want attention.
9. If you're friends with someone with TS, learn to be accustomed to their tics, rather than constantly being startled or disconcerted. Body language alone speaks volumes. If we constantly have to worry about how our tics are going to affect whomever we are with, it puts us in a defensive position that prohibits us from relaxing and being ourselves.
10. Learn to accept others as they are with all their unique differences and challenges. Being able to coexist with others in a peaceful and meaningful way is invaluable.
May 23, 2013
Proud To Be Me
In all walks of life there are many people who would have one conceal certain things about oneself in order to preserve some social fantasy that they keep in their head, some picture that they harbor of how people should and do view them. I have touched on this subject before, but my heart especially goes out to those who are made to feel ashamed of their disorder in one way or another. This doesn't just apply to those with Tourettes, but also those who have other medical issues that can be considered a social stigma. I'm not saying anyone has to broadcast their disorder or should be known by it, but, they should not have to feel as if they are an inconvenience.
I was blessed to be raised in a family who let me be myself with and without TS and was encouraged instead of put down. I was always told that I would be able to do wonderful things, not just in spite of, but also because I have TS. I would be able to relate to people in a way that not everyone else can and I would be able to see people in a different light, because I, myself, had been there. I have experienced my own share of negative encounters with people because of the simple (or not so simple) fact that I have TS - some of these I have shared with you.
You may argue that learning of a person's disorder can change the way some people think about them or the way they treat them and you would be right. I have encountered such ignorance through my own eyes; but really, do I want to be close to and hang around people who think that way with such unwavering diligence? When I have children someday there is a 50% chance that they will be born with Tourette Syndrome and/or one of the other co-morbid disorders that I have. Society will do the job of making one self-conscious, ashamed, embarrassed, etc. about one's disabilities. Therefore, it has no place in the family. To anyone out there with children who suffer from such things or perhaps they themselves do, I would say, your disorder does not define who you are, but it is an integral part of who you are. Learning how integrate your "TS self" and how to live harmoniously with it instead of constantly fighting it is vitally important not only for your own peace of mind and body, but so that you may also be an example to others.
I was blessed to be raised in a family who let me be myself with and without TS and was encouraged instead of put down. I was always told that I would be able to do wonderful things, not just in spite of, but also because I have TS. I would be able to relate to people in a way that not everyone else can and I would be able to see people in a different light, because I, myself, had been there. I have experienced my own share of negative encounters with people because of the simple (or not so simple) fact that I have TS - some of these I have shared with you.
You may argue that learning of a person's disorder can change the way some people think about them or the way they treat them and you would be right. I have encountered such ignorance through my own eyes; but really, do I want to be close to and hang around people who think that way with such unwavering diligence? When I have children someday there is a 50% chance that they will be born with Tourette Syndrome and/or one of the other co-morbid disorders that I have. Society will do the job of making one self-conscious, ashamed, embarrassed, etc. about one's disabilities. Therefore, it has no place in the family. To anyone out there with children who suffer from such things or perhaps they themselves do, I would say, your disorder does not define who you are, but it is an integral part of who you are. Learning how integrate your "TS self" and how to live harmoniously with it instead of constantly fighting it is vitally important not only for your own peace of mind and body, but so that you may also be an example to others.
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