Not worrying about friends judging my tics

So I know my past couple of posts have been on the more negative side, talking about how my tics have been bad so far this semester and how I’m fed up with it. So I decided it’s time for a more positive post!

Anyway, a little while ago (the summer after my freshman year of college) I wrote about my friend Ivy. For those of you who didn’t read that post, I’ll summarize it here.

Basically, my freshman year I started a two-year freshman program about the mind and brain. It’s basically an intro program for my major. In that class, I ticced a lot, just like I did in every other class. Freshman year I didn’t really tell my classes about my TS because I was too afraid to. So once people noticed something was wrong, they usually tended to take one of two positions.

They either stared at me in a very obvious way or ignored me so as not to get caught staring. However, in my mind brain program there was this one girl who kept making it a point to sit next to me every day. I didn’t really notice though until one day she decided to start talking to me.

The first time she talked to me I thought she was talking to someone else, so the first time she said hi to me and tried talking to me I pretty much ignored her because I thought she was talking to someone else! LOL! Then she kept persisting, and I realized she was talking to me, and I responded and started talking to her as well.

Since freshman year, we’ve become friends. We’ve met up to do  lunch and dinner together quite a few times. We’ve had other classes together, considering we’re the same major. And we’ve kept in touch, at some points more than others; but nonetheless, we’ve remained friends.

Last summer, I told her briefly about my TS and about Camp Twitch and Shout, and she told me she has an older brother who has autism and is nonverbal. I know a lot about autism since I’ve worked with autistic children quite a lot as a result of my senior project with a class of high-functioning autistic middle school students and my mom’s job at a special school. In fact, I’m soon going to start helping out with their Friday after school social skills group this semester!

Anyway, back to the point of this post. Ivy texted me about a week ago asking me if I would want to room with her and her suitemate next year. In the text she said that she thinks I would be a really nice person to live with and rooming together would work really well!

My two other suitemates from this year — who I’m very close to — and I all want to stay together, so we’ve decided on a preliminary plan of having the 5 of us (Ivy, her suitemate, me and my two suitemates) room together in an on-campus apartment! I’m very excited about this idea and can’t wait to room with Ivy and her friend.

We’re going to meet on Sunday morning as a group so that the people in the group who haven’t met yet can meet and so we can discuss things in person. I think it will be really great to live with Ivy, her friend and my two other friends. I think we’ll all get along really well, and in particular I’m excited to get even closer with Ivy.

The only thing I’m worried about, though, is that Ivy has never seen my tics to their full extent. I worry that she will have a different opinion of me once she sees my tics in full force. But then I just think how my good friends who I have now have all seen my tics in full force.

They all at one point had never met a person with Tourette’s and now they just ignore my tics and see them as something that’s just normal. I think if anyone would be the kind of person to accept my tics, it would be Ivy. Even though I’m worried about it, I know in reality that Ivy and her friend will both get used to my tics fairly quickly, just like everyone else has.

And once they get used to my tics, they will see me for who I am and not for my tics. They will see my tics as just one small part of me and get to know the person I really am. Even though I don’t yet know Ivy’s roommate, I trust that she is a good and accepting person. I could never imagine Ivy being friends with anyone who is not this kind of person. I think this will only bring new friendships and more support into my life. That I am excited for!

Fantastic Friends: A great social opportunity for NJ teens with special needs

Hello! My name is Marissa Hacker and I am the National Child Awareness Month (NCAM) New Jersey Youth Ambassador and also the founder of a nonprofit organization called Fantastic Friends.

This year for my Ambassadorship project, I am on a mission to travel to different inclusive social programs in New Jersey and help spread awareness about the need for these programs. I started a campaign called NJF.R.I.E.N.D. (New Jersey Facilitating Resource Improvement Empowering New Development), to help connect people with disabilities and special needs to these inclusive social programs.

Fantastic Friends is an inclusive social group for tweens, teens, and young adults with special needs. Every month Fantastic Friends holds a themed social function in a South Jersey location.

I have some members in my organization that have Tourette Syndrome, and I would like to connect with more people who have Tourette Syndrome. I would also like to help spread more awareness for Tourette Syndrome, while also blogging about Fantastic Friends events that are always open to new friends and volunteer friends.

Being a sibling of a brother who has Autism, I know the struggles that come along with having a disability. I see that the biggest problem that people with disabilities face is social isolation. I am looking forward to your feedback! Thank you very much!

Explaining TS to small children

I work in a nursery and also a summer camp, so I spend a lot of time with children under the age of 8 and many under the age of 4. Naturally, the question of tics comes up.

Aside from one little girl who hated the sound of my humming tic and cried whenever I did it (that sucked!), my experiences in this area have been overwhelmingly positive. Most have just ignored it and never asked me.

I spent a really hilarious few minutes teaching a 3-year-old girl how to make the tongue clicking sound that she heard me making. Some others have asked why I am (insert tic of your choice) and I’ve sometimes said that I can’t control it and that I’d stop if I could.

If they still have questions after that I use the following explanation: Do you remember what it feels like to sneeze? You can’t help it, right? Well there’s something unique in my brain where for me (insert tic) is as involuntary as sneezing.

This has usually worked pretty well for me!

10 reasons I LOVE Tourette’s!

Like the title says, these are 10 reasons why I love having Tourette Syndrome! Of course, there are times when I get frustrated with my tics and wish I could just stop the things that I say and do. I have come to find reasons to absolutely love my Tourette’s and be thankful that I have TS. Here is my top 10:

  1. Something more serious is not wrong and causing the things I do. I had tics as a kid, but they reared their big, ugly head once again as a teenager and adult. They were subtle at first, but got so bad that I could not stop moving and twisting and contorting. It hurt. I had no idea what was causing me to do what I was doing. I think back now and am grateful that something more serious was not the cause of the sudden, severe outburst of my Tourette’s. I am not saying that TS is not serious. It should be taken very seriously. There are things that would have been much more devastating that my imagination came up with during those times before my diagnosis, though.
  2. It has taught me some great lessons in life, such as acceptance, kindness, not to judge people for what I observe of them. Of course, these are lessons we are all taught (hopefully) throughout our lives. However, when something like being diagnosed with a chronic illness or a traumatic experience happens to you, you tend to understand and implement these lessons in your own life even more (again, hopefully). Having dealt with mental illness such as depression and anxiety in my own life and struggled with self-injury, I had very strong feelings about not judging people by what you see or hear, but when my tics kicked in and started evolving into what they are now and what they were when they first became a real problem, I noticed the judgment and stigma around me even more. People stare, make fun, and can be downright rude at times. It can really hurt. I never want to be one of those people who misjudge someone because of what I merely observe about them. You never know why someone is doing something or why they look the way they do. Get to know a person before you judge them. You may make assumptions about someone and miss out on a great opportunity to learn, make a new friend or enjoy a great new experience that will never come again.
  3. It is so freakin’ hilarious! I have never laughed harder in my life than I have at some of my tics! In fact, I even wrote a post about funny tics and hilarious moments that have happened because of a tic! Great memories have been made because of a funny tic or situation that occurred because of a funny tic. These are memories that I will have forever. They will probably be some of my fondest, even. Continue reading

Please support my “What Makes Us Tic” documentary project!

A lot of people either haven’t, or have only heard stereotyped references to it like “the swearing disorder.” Tourette Syndrome (TS) is actually a neurological disorder that is characterized by tics, which are uncontrollable movements or vocalizations.

TS is often judged and misunderstood because of the stigmas that have been created by the media and and a general lack of information about the disorder publicly. I intend to change that.

Through the power of film, What Makes Us Tic is an insightful documentary that aims to promote Tourette Syndrome awareness in a positive way, and give a fresh perspective of what living with this neurological disorder is really like.

It will also provide resources for individuals living with the disorder, as well as their parents, teachers, friends, co-workers, or anyone else who may be affected by their TS. Butultimately this film really is for anyone who wants to learn more about Tourette Syndrome!

My name is Bella Marangoni, and I am a Canadian filmmaker and a high school student. I was diagnosed with Tourette Syndrome seven years ago, and ever since my diagnosis, I have been driven to change the way that people think about Tourette Syndrome and mental health in general. Continue reading

This scholarship program is worth supporting!

Not only did the NJCTS scholarship impact my life, but in addition it showed my community how my Tourette Syndrome cannot stop me from reaching my goals. I think that because I have to work harder to overcome obstacles, the opportunity I had to receive this scholarship was worth so much more than anything I could ask for.

~ Amanda Silvers

Support NJ Walks for TS at Princeton, the proceeds from which will benefit the NJCTS Children’s Scholarship Program and help more students like me receive monetary help for college and awareness in their communities!!!

More Clonidine not a good thing

My neurologist and I decided to up my dose of Clonidine because even though it was helping me sleep, it wasn’t having any effects on my tics during the day. So yesterday and today I took half of an extra dose in the morning.

I am having so many side effects, and I don’t really understand why half more of a dose would do this to me. I’m tired, apathetic toward seemingly everything, don’t want to talk to anyone or do anything, and I’ve been experiencing muscle pain and weakness as well as being lightheaded upon standing.

I am going to call tomorrow to see how I can get off of this extra dose ASAP. I’m supposed to be having fun today, since today is bid day for my sorority, but instead I’m sitting by myself hoping no one tries to talk to me.

Telling friends about your Tourette can be a relief

My tics have been really bad for the past week or so. The stress of the start of the semester, being in all new classes with all new people and having to explain my Tourette’s to them all makes my tics so bad! Right now, just about everything is setting them off — including the awful cold I have … perfect timing.

I’m also supposed to be doing sorority recruitment, which is another thing that’s making my tics worse. Today, though, with my cold, my tics, the total overstimulation caused by the cheering and screaming and crowded rooms of recruitment, and the fact that I was feeling feverish earlier, I had to leave recruitment after about half the day and come back to my dorm. I feel like I’m missing out, but I really didn’t have a choice.

Last night, I went to our last sorority recruitment workshop and our pledge family gathering. I stuck through all of that even though it proved to be too much for me. At the recruitment workshop, I was ticcing so much. My grandbig sister is the sweetest person ever and kept checking in with me at various points during the night when she noticed me ticcing a lot to make sure I was OK.

Each time I told her I was fine, even though I was really pushing my limits by not stepping out of the room to take a sensory break and to fully let my tics out. I told my grandbig and my big sister in my sorority about my Tourette’s during this recruitment officially, even though they both had already suspected I had it.

It was interesting because for the most part I tend to tell people about my Tourette’s before they notice my tics or after they see just a few of my tics, but for my big and grandbig I had kept it from them for a long time. I have always been very afraid to tell people in my sorority for some reason.

Anyway, they both had seen me ticcing far to often in the past so they wouldn’t have really asked about it on their own, but I thought that they should know since I was getting so close to them. I told my big when we were walking to get lunch together when I was ticcing a lot by saying in a lighthearted way, “Walking long distances in the cold always seems to set of my tics. Have I told you about my tics before?” Continue reading

Market research study for teen Tourette patients

PLEASE NOTE: Teens4TS, the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS), and its directors and employees assume no responsibility for the accuracy, completeness, objectivity or usefulness of the information that follows in this blog post. None of the stated parties endorse any part of this post. It is merely being posted here for informational purposes only at the sole discretion and responsibility of MedQuery, Inc.

Today is just one of those days

Today is one of those days where I worry and feel like others view me as simply a collection of my symptoms or “that girl in our class who has Tourette’s.”

Sometimes I feel proud to have Tourette’s because it makes me different and unique, and I feel proud of how I have handled the cards I have been dealt. Today, though, I don’t feel this way.

The first week of the first semester of college is always a rough time for me. I have to tell my classes and professors about my Tourette’s before they know anything else about me. Telling group after group, person after person that I have Tourette’s and explaining what it is to a bunch of people who know nothing else about me really takes its toll.

I know it’s something I have to do to make my semester easier in the long run, but during this first week I just feel like “that girl in our class who has Tourette’s.” It’s pretty rare that I feel this way, but I just don’t know how to shake this feeling …

I try to think of all my amazing friends here at college and back home who see me as so much more than my tics, who support me so much and love me for who I am. I try to think of my co-counselors and campers from Camp Twitch and Shout and how grateful I am that having Tourette’s has given me my amazing camp family, but today nothing seems to be helping.

Today is just one of those days where I feel not just a little bit different, but a lot different. Today is one of those days where I feel alone.