Acceptance at last!

So happy right now! I can’t really write about it in depth because I have to eat dinner in a few minutes, but my dad just told me some really great things. I pretty much haven’t talked to him about my own TS diagnosis since the day I was diagnosed more than two years ago. He said some pretty hurtful things out of fear that day. Today, I learned that it was just out of fear and concern for me that he said those things. I feel so much better after this conversation.

He told me that he now knows what TS really is and at the time he just thought thought TS was shouting out swear words. He told me because of me he has learned what TS really is and now he knows and accepts that I have it. He didn’t know it could be as simple as just clearing your throat, sniffling, or blinking your eyes. He told me that he wouldn’t want me to think of him as someone who was insensitive or not understanding about my situation. He is sensitive and understanding of my situation.

My mom heard all this. Hearing her husband say this must have helped at least to some extent to get though to her.

Check out my Tourette Syndrome discussion site!

logoHello, I was first diagnosed with having Tourette Syndrome in 2005, which for me was fifth-grade year. I am currently out of school and working my way into doing various things with Tourette. I just recently found out there was no actual community-based discussion sites for people with Tourette to go and discuss. So I decided to make a site called Tourettes.Me.

My main goal for that is to have a place where people with Tourette can go and talk to one another, as I feel it’s easier to talk about general things with Tourette to people with Tourette — what bothers us, a current tic we have, etc., as well as helping people who have recently been diagnosed with Tourette and especially parents whose child has recently been diagnosed with Tourette.

It’s a scary thing at first, and I feel what better way to re-ensure yourself that everything in the end will be alright as a newly informed person/parent than to have actual people tell them about what is to be expected and what’s not.

This isn’t a disorder to be made fun of

Tourette isn’t just jerking of the muscles and vocalizations. It can be very violent as well. I’ve had several injuries, and this is a “mild” example of one of them. I hate this tic. I have to punch and hit everything. The tic is in my knuckles. I try and hold if off so long, but it doesn’t work!

This one will make me cry and beg on my knees to make it stop. The urge to do it is horrific, and sitting there watching yourself pound walls and doors is just straight up weird! Let alone PAINFUL! I dented our METAL door with my knuckles! Concrete tore it up a little. White wall painted on me. Some of the tan wall, too.

This isn’t a disorder to be made fun of.

“Erasing Limits” debuts today!

Hey everyone! As the new Erasing Limits website and Facebook page Logan and I have been working on debuts today, I have a question for all of you. What other disorders/conditions/disabilities/challenges do you want to see videos about on our new website?

This website is going to be a fantastic new resource, and I encourage you to all check it out and take advantage of it.

The website is basically going to be a video database where you can find high-quality, informative and inspirational videos about various disabilities, disorders and challenges. All videos on the site will be videos that Logan and I have reviewed and think are worth watching for anyone wanting more information, support or encouragement in its respective area.

So far the disorders/conditions that the website includes are Tourette Syndrome, ADHD, OCD, Sensory Processing Disorder, Autism and Stuttering.

We of course are going to expand this database. So my question for you all is, like I said above, what disorders/conditions/disabilities/challenges do you want to see videos about on our new website that we have not already included? These can be TS related conditions or non TS related. What do you guys think? I would love any and all input. 🙂

Don’t forget the distance you have come!

So, the other day I was on a train and a song came on called “The Distance You Have Come,” written by the wonderful Scott Alan and sang by the magnificent Natalie Weiss. Just as the train pulled in to my station, the lyrics were “and when you reach that place, when you’re miles from where you started, don’t forget the distance you have come.”

Immediately, I thought this was quite comical — as I’d just reached my destination — but then I really thought about it, and the lyrics in the song just describe the fight that people take to get to wherever they want to be in life, whether that’s a tiny step or a huge mountain.

The lyrics are so inspirational and I think so poignant, specifically for people like us, whose small achievements each day may go unnoticed by so many people. Please take a listen, I cannot describe the uplifting feeling I get from it!

So never forget the distance that you have come!

Please help out my Tourette Syndrome awareness efforts

Hi! For the Tourette Syndrome Awareness Month and European TS Awareness Day (June 7), I’m collecting as many “versions” of Tourette’s as I can, using the logo of the Dutch TSA. Can you help me with this?

What you need to do is take the circles below and fill them the way TS is for you — the big stuff in the big circles, and the small stuff in the small circles.

For everyone, Tourette is different, so for everyone the circles are different! As you can see in the example below, you can add circles if you want to, or leave them the way it is.

You can send your version of TS to me via e-mail (kids@tourette.nl) or on Twitter (@iLaura_B, @Touretteprobs or @StichtingGTS). I want to make a video and/or collage of it, so it would mean a lot to me if I had a lot more of them!

965351_4247443083434_449056448_o

Support is one of the best things in the world

All I can say is WOW. I just got back from a dinner with my parents and grandparents to see all of your love and support. I was shocked when I saw that so many people had commented on this post to let me know how much you guys support me.

I read every single comment, and each and every one made me feel like I am important, I am someone, I am making a difference, and I am a part of this amazing TS community. You are all amazing, and you all made me feel so much better!

I know my mom truly loves me, cares about me, and wants the best for me in life, but I believe I also now need to accept that she just can’t understand what Tourette Syndrome truly is and what I go though with it every day.

For me, you guys and my amazing friends from high school and college are my rock. You make me feel loved, understood and accepted. Sometimes after I have a conversation like this with my mom, I feel hopeless, but coming back to this brightened my spirits.

This time, I know there is no reason to feel what I have felt in the past. This time, I know that although some people just don’t understand differences, the overwhelming majority of people I have encountered in my life and will encounter in the future will understand and accept me if I just explain and am open about what I have and how it effects me. You guys are the best.

Even though she cannot accept my TS, I just have to accept her for who she is and for her inability to come to terms with this. One of the hardest things is that because of her inability to accept my TS, I suppress my tics around her.

That is one of the hardest things for me, not only because suppressing them is of course physically painful and distressing, but because I feel like she doesn’t know the real me. The real me lets my tics out around my friends and in class because I am not ashamed that I have TS and I accept myself, tics and all.

The real me advocates for acceptance and understanding of TS and all differences. The real me is not afraid to let others know that I have TS because Tourette is something I was born with, something that is a part of me and something that has made me the person who has a passion for making a difference in the world and for making everyone who has differences feel loved, accepted and not alone.

Really need some support right now

OK, I need some support and kind words right now. Just had a big conversation with my mom. Basically, I don’t really tic around her because she just tells me to stop when I do and that it’s not socially acceptable. She has seen me tic before and has lived with my OCD and other conditions my whole life, though.

She tried to deny yet again that I even have TS.

She told me that if I just exercise more then maybe I wouldn’t have TS. Then, when I finally convinced her — probably just temporarily — that I do have TS because I was diagnosed by a neurologist with her in the room and my cousin also has TS and my dad and all of his brothers have OCD, she told me that I better tell my husband/guy I’m dating that I have TS/OCD because if my dad would have told her then maybe she would have thought a little harder before marrying him.

Yeah….. so I need some support right now because I’m not feeling very accepted right now.