Tourette Syndrome and employment, part 2

As some of you know, I started working as an usher at an opera theater company for a summer job to make some money and keep me busy. I’m only 18, so this is really my first official paying job besides lots of babysitting. I wrote about my first night on the job, so this entry is about my second night on the job.

The second night was much better. My mom drove out in front of me so I could follow her and not get lost this time, and so she could show me the right street to turn on to come back as well. It made much more sense to me this time, since I wasn’t as anxious and ticcy as last time.

When I was standing at the infamous Door No. 2 to check people’s tickets, I kept banging my knees against the ticket stand, which got to be painful after a while, and kept stomping me feet, too. At one point, one of the patrons walked past me and said, “Just keep stomping blood into those feet.” I found this slightly amusing.

Afterward, when I was with all the ushers outside again, I was hanging out with two girls and I felt like it was the right time to briefly mention Tourette Syndrome and just get it out of the way and in the open. I told them that I had found a very good way of getting out of having to see the operas. Continue reading

Tourette Syndrome and employment, part 1

As some of you know, I started working as an usher at an opera theater company for a summer job to make some money and keep me busy. I’m only 18, so this is really my first official paying job besides lots of babysitting.

Although I enjoy freedom, I also get bored easily and hate it when I have nothing at all to do. I was somewhat worried about the challenges Tourette Syndrome would pose when working in a professional setting like this, but so far so good. Everything seems to be working out just fine for the most part.

I’ve only been working for three days as an usher, but I’ve made it a point not to be ashamed of my Tourette and to also be open about it in the new work setting. The good thing is that all of the ushers are around my age (high school/college), and there is so much down time during the acts to just chill and hang out with the other ushers.

The first night I decided to feel things out and not really jump into telling the other ushers about my TS right away. I’m not the kind of person who feels the need to introduce myself with the TS label attached. I feel it out and then I’ve found that if I keep an open mind and tell myself I’m going to be open and willing to talk about my Tourette, then I always know when the time is right to talk about it. Continue reading

OCD a la Marie

Do you have OCD? Have you ever wondered what OCD is like for another person who has it? Or have you wondered what it must look like to other people who don’t have it? This video by MarieD from Belgium answers those questions. Just a warning, though: This video might make you dizzy or queasy — or it could make your head spin! But it’s worth a read.

http://www.youtube.com/watch?v=aN-Rl-RjVf0

In college or going to college? Join We Connect Now!

With the Dare To Dream Student Leadership Conference still fresh in our minds, Teens4TS would like to present all of our college students and soon-to-be college students with a valuable resource that was developed to help connect and integrate college students with disabilities as a virtual community with a voice on important issues.

Since April 2008, We Connect Now has been doing just that. It is regularly used as a resource by institutions of higher learning and has linked to by colleges, universities and groups serving people with disabilities in all 50 states and at least 10 other countries around the world.

We at Teens4TS strongly encourage you to check out this website and utilize its programs and services if you are either in college or getting ready to go to college. And if you do, come back to this post and let us know how you fared with We Connect Now. The more people that know about it and how it works, the better!

Don’t mess with the mom of a “child of difference”

I was reading this and thinking of how my own mom is, and I couldn’t help but laugh. Feel free to steal this for yourself 🙂

“REASONS YOU SHOULD THINK TWICE BEFORE MESSING WITH A MOM OF A CHILD WITH A DIFFERENCE”

1. Chances are it’s been awhile since we’ve had a full night of sleep, and that will give us a reason to plead insanity.

2. Beware: We are not afraid to have a serious “meltdown” of our own.

3. We are tired, and we are saving all the patience we have for our kids.

4. We have a far shorter fuse for nonsense as a result of our responsibilities, but A FAR thicker skin.

5. We can get you in a hold/lockdown position in less than 3.5 seconds.

6. We can shoot you a look that would make a linebacker tremble in his boots.

7. Some of us have given up on using skills, mirroring what others are reflecting to us, and therefore, will choose to share the with those who are lacking…

8. Our tolerance and patience is for our kids who didn’t choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.

9. We’re probably already on edge and it would be unwise for you to push us over.

10. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?

11. We’ve had to fight from the moment of our child’s birth so by the time you tick us off, we’re seasoned battlers and could win a war.

12.We devote our lives to our children and don’t need more stress from people who don’t understand our life.

13. Wherever there is a cub, there is a mama bear… We’re always watching.

~ JoNeen Ohlaker

Tourette Syndrome Awareness Month: Videos of tics

I thought I would share my newest videos on here! They are about educating others about waxing, waning and the progression of tics using my own experience of my tics since childhood as a real-life example. Feel free to leave comments! As some of you already know, I do really love comments!

Part 1 is mostly about my tics up until and before my official diagnosis. Part 2 mainly focuses on my current tics. I decided to make them unlisted so that only people with the link can view it. I guess I’m just more comfortable with it being semi-private. But if you click on these links, you can surely see them and share them! Hope you enjoy! I enjoyed making the videos because I knew it would help and educate others 🙂

Part 1: http://www.youtube.com/watch?v=qsQXwqo_1Ko

Part 2: http://www.youtube.com/watch?v=qFw3_7LvowE

 

Dare To Dream Conference was a total success!

Hey everyone! It was such a thrill getting to speak at and take part in the Dare To Dream Student Leadership Conference on Monday at Rutgers University. That is me above speaking, and I had such a blast! There were so many people there, including students, teachers and parents.

It was great of the New Jersey Center for Tourette Syndrome and the New Jersey Department of Education to put this event on. I am so thankful to them and want to make sure they know it!

I got to introduce the panel of speakers and speak a little bit myself, both in the beginning and at the end during the open mic session. Here is a little bit of what I shared:

As I was growing up, I’m not gonna lie, I remember days where my tics were so bad that I would be on the floor crying all day. My parents are incredible, they’ve always helped me through everything. My mom would hold me during those times and tell me everything is going to be OK. Some days I would be so exhausted that I would just lay in my bed and hope to God that everything would be OK.

Kids would stare at me, and that’s what got me the most. They were judging me, and they didn’t even know me. That’s what they thought of me in their heads. I thought it wasn’t going to get better, but it did. I went from my tics controlling me to me controlling my tics.

I still have days where I get frustrated, but now I’m able to calm myself down. Even if you break down every single time, it’s OK – it makes you stronger. Eventually, there will be that one time where you won’t break down because you will be strong.

That’s just a little bit of my story. There is so much more, and I am so blessed to be a college student now at Montclair State University — just finished my freshman year! I hope any of you who attended the conference got as much out of it as I did.

And I hope that those of you who didn’t got a little taste of what it was like from reading my post. Just remember: Nothing is impossible for anyone, whether you have Tourette Syndrome, OCD or some other disorder. You have everything you need within you to succeed. Now go show the world!

Noisy, twitchy and anxious … and staying in bed!

So since my last blog, my tics seem to have become considerably worse. Every other time this has happened, I’ve tried to find some sort of reason behind it — with things such as exams, and I have just started a new job — so I’ve decided to put it down to that!

But I have found that I’ve also got increased anxiety. The thought of being in a situation where I might be on my own makes me feel very scared, and if I’m going somewhere I feel I need to know what time we’ll be leaving to get there and how long I’ll be there for.

I’ve always been a bit obsessive with some things, such as timings (yet I am still often late – I don’t know how that works!!!), but it has got a lot worse recently — to the point where I need to be as much in control as possible whenever I can.

I hate that now the thought of getting on the bus on my own makes me feel sick. Up to now, I have been very conscious not to let my Tourette stop me from doing things, but as soon as my tics intensified, I felt so self-conscious I think the paranoia of what could happen is paralyzing me.

I know this is just another hurdle I have to get over with Tourette, and hopefully soon I’ll feel confident enough to venture out on my own again. I feel a bit silly that during the period of time dedicated to Tourette Syndrome Awareness I am cooped up in my house scared that people will even notice I have TS.

My heart wants to swell with pride for all those who are out there in the world ready to educate people about this condition so silly, self-conscious girls like me don’t have to fear the outside world so much anymore!

Sign the iPetition for Tourette Syndrome bills S.2321 and H.R. 3760 today!

Hey guys, my last few posts (here and here) have been about the bills in both the House of Representatives and Senate in regard to the expansion in funding for research and various programs involving Tourette Syndrome.

The Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act of 2011 would amend the Public Health Service Act to provide for the expansion, intensification and coordination of the programs and activities of the National Institutes of Health with respect to TS.

The New Jersey Center for Tourette Syndrome has recently created an iPetition on iPetitions.com in order to gain support for the bills.  Please visit the site here and sign in at the bottom with either an iPetition account that you can create for free, or with your Facebook login.

Share the bills’ iPetition link on your Facebook, by e-mail, on Twitter and with whatever other social networks you might use. Once again, it’s extremely important to spread the word about these bills in order to garner more support in the area of funding for TS programs and research in the future.

Here’s the actual link: http://www.ipetitions.com/petition/tourettesyndrome/

Thanks for all the help!