Rock group “The Lappes” to jam at NJ Walks for TS at Mendham on November 23

The Lappes (pronounced laps) will partner with with the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for the second time this year by playing at the 4th annual NJ Walks for TS at Mendham, on Saturday, November 23, at Borough Park.

The Lappes, who played in April at NJ Walks for TS at Ramapo College, are looking forward to the upcoming event and will begin playing when registration and check-in opens at 9 a.m. The walk itself will commence at 10 a.m.

The Lappes are a four-piece, smooth rock fusion band that have taken their inspiration from classic rock and reggae icons such as The Allman Brothers Band and Toots and the Maytals, and fused it with contemporary sounds comparable to John Mayer and Phish. Band members include guitarist and vocalist Tom Wilkinson; guitarist, pianist and vocalist Will Miehe; bassist John Fraze and percussionist Shane Naidoo. 

Tourette Syndrome (TS) is an inherited, misdiagnosed, misunderstood neurological disorder characterized by involuntary movements and sounds called tics that affects 1 in 100 children and adults. Miehe – who was diagnosed with TS, Obsessive Compulsive Disorder (OCD) and Attention Deficit Disorder (ADD) in the third grade – is excited to once again support New Jersey’s vast TS community.

“We had a great time playing at the last walk,” Miehe said. “TS is something that has affected me personally. Music has helped me cope with it, and I would like to share my outlet with others. We hope for a good turnout and anticipate an amazing time.”

The Lappes have performed in numerous iconic New Jersey locations, including The Court Tavern in New Brunswick and The Revel Casino in Atlantic City. Currently, The Lappes are cutting a demo EP that will be ready for release by the end of November 2013. For more information or to look up show dates, please visit The Lappes’ Facebook page You can also follow them on Twitter or Sound Cloud. 

NJ Walks for TS at Mendham will be a day of advocacy, awareness, acceptance and action geared toward raising funds to support educating students and teachers about TS across the Garden State through the School In-Service Program. All money raised will help fund the School In-Service Program, which costs NJCTS $71,000 per year.

More information about NJ Walks for TS is available by calling 908-575-7350 or by visiting the official registration and fundraising pages.

Experiencing Sensory Processing Disorder

Check out this great video about sensory processing disorder. It basically describes me as a kid and even to some extent today. Below, I have listed all of the symptoms mentioned in the video and have noted which ones I personally have experienced in the past or currently experience in parentheses.
  • Trouble making eye contact (sometimes, more when I was a kid)
  • Trouble focusing, concentrating and/or following directions (yep!)
  • Selective hearing or difficulty listening (not so much for me)
  • Overly sensitive to loud sounds (oh yes!)
  • Talking too loud or too quiet (sometimes)
  • Make inappropriate noises or repeat myself (you bet! but that’s more of a TS symptom for me)
  • Always smelling people, food, and objects (yes, especially when I was younger, and I will even catch myself doing it now. However, this one can also be a tic!)
  • Chew on everything (I chewed on my hair when I was a kid for YEARS!)
  • Resist certain textures like finger paints of play-dough (oh yes! For me the worst are chalk, velvet, and paper when my hands are wet)
  • Have a hard time standing in line or staying calm during rest period (UM how can I say definition of me as a child!)
  • Poor fine motor skills such as handwriting or cutting (Yes, even today my handwriting is awful and cutting is better but was very bad when I was a kid)
  • Clothes look sloppy (not so much for me)
  • Shoes on the wrong feet (not so much for me)
  • Poor gross motor skills such as running and climbing (yes!)
  • I sit with my legs in the “w” possition when working on the floor (Yes! I sat this way since I was an infant until I was in about 3rd grade)
  • Walk on my tippy toes (not so much for me)
  • Cant sit still (you bet!)
  • Have trouble learning or making friends (yes, with a lot of things when I was a kid)
  • Be very shy (yes, when I was a kid)
  • Trouble coping and having a lot of tantrums and melt downs (yes!)
  • Afraid of a lot of actives that kids usually enjoy (definition of my life!)

Life wouldn’t be the same without Tourette’s

I’ve been having a lot of hitting tics lately. I’ve been hitting my chest, shoulders, arms, tables and walls a lot. I’m tired of these tics because, more than any other tics, they hurt. Sometimes it makes me feel a bit better to wear my Camp Twitch and Shout “Tourette’s Tics Me Fff” wristband, so that’s what I’m doing today. Tourette’s is really ticcing me off right now, so the bracelet really seems to be fitting my mood today.

Sometimes I feel like I get all dressed up. I put on nice make up, nice earnings, am really happy with the outfit I picked out today, and then I feel like my tics kind of ruin it all. Sometimes my Tourette’s makes me feel special and unique, and other times it just makes me feel different.

At least I get to look forward to hanging out with other ticcers this Saturday at our next Missouri TSA event! I’m excited for that, especially since I know that there will be people who are my age at this event. It really helps me to see and talk to other people who tic who are my age or older.

It makes me feel less different, and helps me to remember that my tics are just a part of who I am. Even though sometimes I feel embarrassed by my tics or angry at myself for not being able to stop, being with other people who have Tourette’s helps me realize that it’s just something that is a part of me.

I can’t just stop ticcing, it’s something I can’t change, so why not look at it in a good way. Let’s put it this way, if someone told me tomorrow “I’m going to take away your Tourette’s forever!” there might be a part of me that would be very happy about that in the short term, but most of me would shout “NO! I wouldn’t be a counselor at Camp Twitch and Shout, I wouldn’t be on the board of the Missouri TSA, I wouln’t have amazing heart-to-heart conversations with other people who have Tourette’s or who dont have Tourette’s, I would be deprived of so many good things in my life right now that make me special and make me who I am!”

That is what I try to think about.

Vote for an important Tourette project in Europe!

Hi everyone, I am Marie and together with some other people with Tourette’s we are building a platform for local youth with Tourette’s in a part of Belgium, Europe. We also try to educate the public about Tourette Syndrome.

I have been nominated for a “competition” organized by a local weekly magazine. If we have enough votes gathered, we will win a money prize and space in the media to further explain our projects (and thus, Tourette’s).

May I ask to vote for me and the Ik Tic project? You would help us a lot! Voting is possible until the 4th of November and can be done this way (and only once, so feel free to share!):

  • Visit this webpage: http://www.libelle.be/lifestyle/258633/wie-wordt-libelle-vrouw-2014
  • Click on the button “Neem deel!”
  • Scroll down and click on the bullet to the left of my name, Marie De Ryckere.
  • Click on the button “Volgende stap” below
  • You voted for the Ik Tic project I started with Pieter, Simon and Ward. Thank you very much for your time, and vote for us! 🙂

Poetry: “Not Letting Her Go”

Hey guys! Here is a new poem I wrote for my poetry class about Tourette’s. The first part of the poem is based on and about when I was holding a young girl’s hand at Camp Twitch and Shout who also had Tourette’s and I felt like I was holding the hand of a younger version of myself. The second part of the poem is based on a video I have of myself ticcing in dance class from when I was little:

Passing by the gates of the pool her hand was in mine

squirming like a wet fish.

She bounced as she walked,

her bare feet playing games with the freshly

cut grass that smelled like broken avocados

and dusted peanut shells to me.

She tapped her fingers against my palm like a song

and I held her hand tight so she wouldn’t run.

It was my first time holding a hand so small

a hand so much like my own and

I didn’t want to let her go.

She didn’t know my fear yet.

She didn’t know the fear

burning blue like sulfur flames

pulling air from my lungs,

the fear that suffocates.

I didn’t want to let her go.

It would come later, this knowing,

later when she watched the videos

that her mother had filmed of her in dance class

wearing the pink leotard, the black tutu.

Standing in the line with the other girls,

they would be singing and blowing kisses,

spinning in fluid motions like little pink

wind up dolls in painted music boxes

and she would be trying,

trying to be that little pink wind up doll too.

But she would be interrupted,

interrupted by her own eyes that couldn’t help

opening and closing,

opening and closing.

Interrupted by her hands that were no longer

gracefully rising and falling

but instead had found their way up to her face

on their own,

instead were hitting themselves against her cheeks

and her mouth

and her tongue.

She would taste the salt of her hands

unexpectedly.

Her palms would taste sour like grapes

picked off the vine, still small and green.

Her lips would pucker from the taste

and she would wonder

why she couldn’t keep dancing

why she couldn’t be that wind up doll in the music box.

Then her legs would tighten,

she would fall,

unwillingly,

crumple beneath the weight of her moving body

and the other girls, they would look

and she would feel

ashamed.

Teens4TS Showcase: 3 NJ teens educate 120 Yale docs on Tourette

Between them, teenagers Grace Hawruk, Tommy Licato and Tess Kowalski have delivered more than a dozen presentations on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS). They’ve spoken to students, teachers, doctors and residents about what it’s like to live with TS – an inherited, misdiagnosed, misunderstood neurological disorder that affects 1 in 100 kids.

But prior to October 8, each of their presentations had taken place at hospitals across New Jersey. On this particular Tuesday, however, the trio was invited to speak at one of America’s leading institutions of higher learning – Yale University. Their talk about Patient-Centered Medical Education at the Yale Child Study Center not only was well-received by the nearly 120 faculty and trainees of the Yale School of Medicine, it was lauded and encouraged to be replicated – nationwide.

“In an academic clinical research center – one that is the birthplace of much of the important work into the causes and treatment of TS over the past 40 years – it was very important for clinicians and researchers to hear from the teenagers themselves,” said Dr. Robert King, a Professor of Child Psychiatry at the Yale Child Study Center and a key partner of NJCTS. “There is a lot of excitement here about the thought of the NJCTS Patient-Centered Medical Education program being used as a model with children and families affected by other clinical disorders.”

Patient-Centered Medical Education is a unique education program that provides doctors and physicians in training an opportunity to hear directly from adolescents/young adults with Tourette Syndrome and their families. It fosters an understanding of the perspectives, stresses and needs of families living with TS and associated disorders such as OCD, ADHD and anxiety. Continue reading

Getting through problems at school and at home

Hello everyone. Life has been mostly good to me so far. There was a day that was very stressful for me because my teacher decided to call me and leave me a message at the last minute saying that if I didn’t do an extra assignment by 8 p.m. that night that I would be withdrawn. So, that wasn’t pleasant. I’m doing a DBA with him today, so I hope that goes well — this is my first time talking to him ever, so I’m really scared.

Also, I’m having trouble getting to the doctor because my mom has made appointments, but it always ends up being that she/we forget about it and so forth. My mom believes that me having TS is her fault (which makes no sense because no one that I know of on her side has TS). And, even if she did give it to me, I would love her no matter what and I’m thankful to have her as a mom.

But I’m just really annoyed about it, so I’m going to have my second mom teach me how to set an appointment by myself so that not only can I go to the doctor, but I will learn for the real world. I hope this works out. Hope you all are having a splendid day.

Poetry: “Why do I have Tourette’s?”

Why, oh why, do I have Tourette’s? Or in reality, does it have me? I don’t know… you don’t know. What DO we even know? Not much, not much. Not much is known. ‘Tis a weird disorder, you see. It makes us move, makes us talk. A tic, it’s called. A tic, a tic!

Tourette’s is tricky. Tourette’s is picky. Tourette’s is also kinda icky. It comes and goes. Waxes and wanes. It’s changing all the time! One day it’s this. The next day it’s that! Please… just stay the same.

A tic, a tic. it’s such a dick! Can you please just let me be? I want some peace. I want some quiet! Why can’t you let me be? It is all I want. All I hope. Please… just let me be.

Improving a relationship I’ve always wanted

I am feeling really good right now for a number of reasons. First, I am finished with all my midterms for now. I had about five major midterms last week and finished them all on Thursday. Then I got to come home on Thursday night since it’s fall break and I got to spend three days at home with my parents, my dog and my brother. It was such a nice break from all the stress of college life.

Most of all, though, I am very happy right now because my grandma made my night earlier tonight. As those of you who follow my posts know, my cousin who is my age and who also has Tourette’s, OCD and its other various co-occurring conditions was in the hospital for three days last week. She came back home five days ago and the day she came home my grandma told me she sounded good over the telephone but I was still not convinced.

I was really worried about her, even though I knew she was home. I was worried she would go back to the hospital and wouldn’t be able to stay home. I was almost waiting from a text from my grandma or a post on Facebook from her brother saying she was back in the hospital. I was worried she wouldn’t recover and that things would just go downhill from here.

My grandma texted me last night, though, and her text gave me so much hope! I have been trying to reach out to my cousin and connect with her on a stronger level ever since I found out we both have a Tourette’s + (Tourette’s and all the co-occurring conditions that come with it) diagnosis.

I thought of how amazing it was that there was someone else in my family who was my exact same age and also has Tourette’s +. I thought how neat that we both are going through similar things and how great it would be if we could have a strong relationship and really be there for each other.

I had been alone for so long with my struggles, had had no one to talk to about what I was going through, and felt like no one understood me. I thought if she felt anywhere near the same way that I did that she would want to have someone to talk to and confide in as much as I did.

It would have meant so much to me to have someone like that in my life when I felt like no one around me could understand. It didn’t quite work out though. I’m not sure why. Continue reading

Need some help

Hey guys, so I need your help/advice. I know a girl in my sorority who I am pretty sure has tics. I have yet to find anyone on campus with tics/Tourette’s, and I really really want to have someone on campus who I know with tics/Tourette’s, too, so that I don’t feel so alone on campus sometimes.

I’ve been agonizing for a while over how/if I should contact her about it, and I finally think I am ready to/know what to say. I don’t want to ask her if she has tics outright in case I am totally wrong on this one, but I have seen her repetitively tic many times, so I think I am right.

I wrote out a message that I want to send her on Facebook. What do you think? She has already shared with me that she recently got a diagnosis of something (she didn’t really specify in the moment, but she is very confident and open, so I feel like she would have been willing to if I asked). This is the message I would send her. What do you guys think?

I know this is a bit of a delayed reaction/ message, but I figured better late than never. When you asked me about my experience with disability services accommodations in the dining hall a little while ago, I felt like I wasn’t giving you very good answers since there were a lot of people around the table!

So I wanted to let you know that if you have any more questions, you can definitely ask me or if you just want to talk I am here, too. I know it can feel somewhat lonely to have a new diagnosis when you don’t know anyone else who has a similar diagnosis on campus or around you and sometimes you just want to talk to someone who knows what its like.

Of course, I don’t know your exact diagnosis and you don’t need to share that with me if it’s not something you’re comfortable talking about, but when I first got my diagnosis I feel like I really had no one to talk to who actually understood fully what it was like and I would have really appreciated if someone had reached out to me. We could have completely different diagnoses, but most of the time that doesn’t really matter and it’s just nice to know you aren’t alone in what you are going through

I’m pretty much very open about talking about my diagnoses since I’ve been diagnosed with Tourette’s Syndrome (a neurological disorder that causes me to have twitches, movements and sounds) for three years, OCD for four years, and sensory processing disorder and generalized anxiety disorder since I was very young.

Most of the time I really enjoy sharing my experiences with others and also hearing about other people’s experiences but I have yet to find anyone on campus! So if you ever want to talk/ ask me questions about disability services or talking to professors about your accommodations I would be more than happy to. I would also enjoy it, too, since I myself can feel somewhat lonely on campus not really knowing anyone else in my friend group or in aoii with a diagnosis/ Cornerstone accomodations:)

— Alpha

So what do you guys think?