I survived the wrath of Sandy (not Sandy Cheeks)

Herro der people of the interwebs, and welcome to a very fabutastic post by me, your host, Jaden. It’s pretty amazing that I’m typing this, because Hurricane Sandy gave me a visit the other day and we lost no power. It was awesome! I’ll tell you about it later.

On Saturday, I went trick-or-treating. When I said a lot of treats and terror, I meant A LOT A LOT. By the time I got home, I would say I had about 3-4 pounds of candy in total. The terror part was in the middle of my route, at my best friend’s grandpa’s house.

My best friend’s grandpa brings him to his house and has him be a part of the scariness. This year, he was dressed in a scary swamp-like-thing costume. Oh yeah, he was also covered in blood. Now, that’s just one slice of the cake. The reaaaaaaaaaaally scary part was this guy dressed in a similar costume, but bigger and creepier. Did I spell that right? I don’t know.

Anyways, the guy had a gargantuan chainsaw, and he walked around very calm, and if you were near him, and he saw you, you ran. You. Just. Ran. He would chase you down the block with the chainsaw on, and he would scream like someone that went insane.

Back to Sandy. The other day, she made the power flick on and off 3 times. No more, no less. But the power stayed on the rest of the night, and Sandy’s gone now. She’s back in Texas. Wait, no, that’s Sandy Cheeks. Tropical Storm Sandy, I’m glad your gone and out of my state.

I pray for all the victims of Sandy, and I hope nobody got too stressed. Most likely, a lot of new tics were created, and I hope they go away from those who got new ones. It’s 10:46 a.m. and … um …. I don’t know what to do. That’s all, folks!

New tics, anyone?

Just curious, how often do you get new tics? I notice I have at least one vocal and motor tic every month. They just pop up one day, and I realize that I must have a new tic because the actions aren’t something I would normally do.

Sometimes, I don’t realize how much I am ticcing or when I am making noises at first, so my friend has to remind me. I find that even with the new tic, the older ones become less popular but are still always there.

Since we started noticing the tics in January, I probably have at least 40-50, I’d say — some really random that only pop up once in a blue moon, while others I have realized will always be part of the show.

What is your experience with new tics? Post them here, or describe on the Teens4TS Great Wall of Tics!

Tricks (NOT tics!), treats and terror!

Herro der people of the interwebs and welcome to a very fang-tastically spook-tacular quiz post! I forgot to do it Friday, but then I realised, it’s trick or treat! So what better time to post! This week’s theme is……riddles! You might have thought it was candy, but the joke’s on YOU!

  1. This one is sooooooooooooooooooooo easy. What gets wetter the more it dries?
  2. Fairly easy, this one is. What fills a room but takes up 0 percent of space?
  3. This one is, as they say in Asia, IMPOSSIBRU! If you throw it off the highest building in the world, it shall not break. Put it in the ocean, it will break. What is it?

Well that’s all for today. Oh wait! On Wednesday, I’ll post about trick or treat. It was actually just treats and terror. A LOT of treats and terror, I should say. That’s all, folks!

Advice on how to deal with OCD

EDITOR’S NOTE: The following blog entry was written as a response to someone in the “How I got my diagnosis” thread, which has become the most popular one ever to appear on Teens4TS. Check it out today if you have Tourette Syndrome or OCD.

My OCD got really bad about two years ago. I developed a really close friend through track, and before I knew it, I was convinced that his welfare was in my hands. So I had to do things like tapping, blinking, etc., in five times and then count to five. I had to send the same goodnight text message every night, and if I sent something trivial afterward, I had to resend it to ensure his safety.

So I did some research and found this Four Step Plan. For me, step one was all about realizing when I was having an obsessive thought. You need to learn to recognize that this thought is obsessive, so anytime I realized I was worrying over my friend’s welfare, I said to myself, “OK, this is an obsessive thought. I don’t actually need to tap and count to protect my friend. This is an obsession talking. I am having a compulsion when I want to retest him our goodnight message.”

It takes getting used to, but you’ll get the hang of it. You need to call out your OCD, basically. For me, in step two, I had to remind myself that it was the OCD making me feel this way and making me want to do rituals — that I had something wrong in my brain and this wasn’t just my thoughts alone. None of these thoughts have any real meaning.

Step three is the toughest, and I had to wean into it. It is all about resisting the urge of the compulsions — even for a minute, at first. My friend helped me with this one. First, I couldn’t tap and count in his bathroom, and eventually it spread to his whole house, to our classes, to the whole school, to anywhere.

In this step, say you really want to do a ritual — just get yourself to think about something else or do something else for even a minute. As you get better, increase the time before the ritual. With step four, you revalue the thoughts for what they are — just thoughts. Nothing bad will happen. Remember do all the steps at one time every time you have an obsession.

“GET ME OUT OF HERE!” … when OCD attacks

Yesterday, I had to leave class because of my OCD for the first time in a long, long time. My Imaging Sciences professor didn’t tell us ahead of time that we were going to take a tour of a wet lab on campus. I thought I would be OK if I just didn’t touch anything and kept my distance, but my OCD went crazy when we got to the lab and there were signs everywhere saying “toxic hazardous chemicals used here.”

I stuck with it, though, even after this because I thought, “Well, everyone else is here, I’ll be fine if I just don’t touch anything.” I still started planning an excuse that would get me out of there if need be. It was just too much for me when the lab director opened up a jar of fruit flies that started flying everywhere. My OCD jumped into action even more, making me think of how the flies could land on these toxic chemicals then come over and land on me.

So I used my excuse, told the teacher I had a migraine, and I got out of that lab as fast as I could. I’m a little upset that I had to leave class, but mostly I’m just relieved that I got out of there before a fly landed on me. That would have most likely resulted in hours of ritualizing. Since my summer intensive treatment, I have not needed to ritualize to this extent, and I am glad I avoided having to. I think it’s safe to say I will not be working in a wet lab in my career.

Homework is horrible, but necessary

Yes, you read that right. Homework might be horrible, but that doesn’t mean there isn’t an upside to it as well. For example, you have the excuse to go to your room and be alone for hours on end and can let your tics out as much as you want because no one else can see you or — especially if everyone else is downstairs watching TV — hear you.

So doing your homework can end up being something you look forward to doing. But not always. Why the sudden change in opinion, you ask? Well, it’s not exactly a change in opinion. It’s more that there are also bad things about Tourette and homework.

For example, you might be able to tic all you want, but the more you tic, the less you get done, and I’m sure most of you know that once you start to tic it is very hard to stop because it uses A LOT of energy.

If I’m honest, which I’ll always be in these posts, I’m actually supposed to be doing my Religious Studies homework on how someone could apply “Right Livelihood” to their lives (from Buddhism, of course) right now. What make’s it worse is it is  due tomorrow and I haven’t got a clue what I am supposed to do. But I guess that’s why the Internet was made. 😉

And also what I might as well mention in this is that my tics have been getting worse lately, and whereas I can usually hold some of them in and/or disguise them, now it takes all my energy just to suppress them through one lesson at school. Can you guys believe that they don’t even give me somewhere I can go to let my tics out?

Speaking of somewhere to go, there isn’t even somewhere I can take tests separately anymore, so I have definately failed my German writing test, as we were supposed to write 150 words and I only managed to get down 69 words AND my teacher “forgot” to give me extra time. 🙁

I know at this point I have somewhat rambled on, but this can be used as a bit of insight into doing homework with Tourette and a small update of what’s been happening recently for me. And, yes, this was a kind of an out-of-the-blue thing. 🙂

Should I get an IEP in college? Are they even available?

So I came from college to do some fall tradition things with my family and went over to a friend’s house. I started talking to her mom about how she was doing at school, and that led to how I can tank a test and still know the material.

During junior year, I did worse on a Chem retake than the original, and after failing a lot of tests, I was asked if I got anxious during tests. In Trig, after having failed three things in a row, I was placed in the Math lab office and got a 91. After failing the first test of Pre-Calc during my senior year, the teacher asked if I had an learning disability or testing location issue.

These are just a couple examples of times I did poorly on a test, even though I knew the material. My friend’s mom, after having heard about my OCD and TS a couple times, asked why I never got an IEP (Individualized Education Plan) for testing locations. It was clear that I got so worked up over tests that I psyched myself out.

Plus, with the diagnosis of TS junior year, I was always restless and wiggly during tests. I tapped, made noises and normally ended up moving the table. On top of that, I have always had issues learning in an auditory manner to a point. I have noticed in college that unless I am constantly kept busy with notes, I have to play on my cell phone in order to stand a chance at recalling anything.

My friend’s mom works with the special education program for our local elementary, so she knows what she is talking about. Since I have TS and OCD (it has gotten better, but tests definitely make me nervous at times), she said I probably could have been given an IEP under OHI (other health impaired). Continue reading

A very special call from a very special friend

Last weekend, one of my best friends from high school gave me a call. She is the friend who I have referred to as Tie Dye in previous posts. This call really made my day and made me appreciate how much friendships can truly mean even more.

She asked me about my day (because she always genuinely cares) and asked me about my plans for the weekend. I asked her about her day and her plans for the weekend as well. She wanted to make sure I was still enjoying college and having a fun time and I told her all about how I was still loving college!

We started talking about big lecture classes, and then the part that really got to me and made me so grateful to have friends like her, though, was the part of the conversation that went something mostly like this:

Tie Dye: “So this might be a little bit of a sensitive topic to talk about if you’re next to people, but how are your big lecture classes, with your tics I mean?”

Me: “They’re pretty good actually. Not as bad as I thought they would be. The people in front of me sometimes turn around and look at me because they’re probably wondering ‘what is she doing?’ but then they pretty much ignore me and I ignore them. Thanks for asking.”

Tie Dye: “That’s really great. Oh and how are your friends about it? Are they understanding?”

Me: Oh yeah, they’re great about it.

Tie Dye: “Good because if they weren’t, they’d have to answer to me!” Continue reading

3rd annual Youth Advocate 5K’s roots are in Tourette Syndrome community

EDITOR’S NOTE: This story appeared in the Sunday editions of the Central New Jersey Courier News newspaper and on MyCentralJersey.com on October 21.

On Nov. 19, 2010, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) held its first annual 5K to benefit Garden State kids with Tourette Syndrome. Called New Jersey Walks For TS, that initial event was a great day with a lot of effort put behind it.

Now, as the third annual event – now dubbed the Youth Advocate 5K Family Run/Walk – is set to take place at Mendham’s Borough Park on Saturday, Nov. 3, I reflect back on the roots of this wonderful event – which started out with a simple phone call based on an even simpler idea.

I decided I wanted to put my time and effort toward a good cause. Being that my cousin, Basking Ridge native T.J. Stanley, has TS made it the perfect cause to tackle. He had made a documentary about his life and how TS has affected him, and after one viewing, I knew it that it was time to get started on creating an advocacy event. Continue reading

What really happened at homecoming

Don’t ask for a light load, but rather ask for a strong back.

~ Anonymous

Hey everyone. All of you have been wanting a picture of me from homecoming, but I would like to tell you all what really happened first. I said I had a great time, but the truth is, I had an OK time…for the first half of the dance. I’ll explain why.

I went with my best friend, Ana. I was excited about the dance and everything. I was also extremely nervous because of all the people that were going to be there. We both got help with our hair and makeup from Ana’s sister. I loved and still love my dress that I chose for the dance. I felt like a flapper from the 1920s. *Hint, that’s what I’m going to be for Halloween.*

Anyway, we get there, and all the tables seemed to be taken. I challenged my social anxiety and succeeded by asking some girls if the other seats of the table were taken. The girls seemed to be anti-social and had sat through the whole dance. I felt bad for them because they chose to sit around and not do anything when they could have danced and had a good time.

I, again, tried to show my social anxiety who was boss and went out and danced. Ana came with me and it took her a couple dances to get used to dancing with me. I was embarrassed, too, but I wasn’t going to sit around waiting for something to happen. Continue reading