My experience with dysgraphia

So today I figured I would write about my experience with dysgraphia, another co-morbid condition associated with Tourette. I recently watched the new Tourette Syndrome Association program Tourette Syndrome in the school, classroom and community,  which you can watch online for free.

This is a great resource for parents with children with TS, teachers with students with TS and for students with TS. Although a lot of it focused on the actual tics themselves, there was a lot of focus on co-morbid conditions associated with Tourette.

I have a fair amount of co-morbid conditions that have effected me a lot over the years, so I could really relate. I have OCD and anxiety, which affect me every day and which are two very common co-morbid conditions associated with Tourette’s. But I also have another co-morbid condition associated with Tourette’s that is not as well known even though it is a very common co-morbid condition with Tourette’s.

I have been dealing with dysgraphia since I was first able to write. Dysgraphia is the deficiency and extreme difficulty associated with the ability to write, primarily in terms of handwriting. It is technically classified as a learning disability referring to extremely poor handwriting. Continue reading

Pushing through the obstacle course of life

The most important of life’s battles is the one we fight daily in the silent chambers of the soul.

~ David O. McKay

Hi everyone. This is going to be a short blog because I have so much to do. But I wanted to show you guys a poem I wrote last night. I made mistakes that almost cost me a really good best friend. I didn’t realize the mistakes I made until she told me them. Nobody is perfect, but I made sure that I would make up the mistakes I made. She is a great friend! Here is my poem and I hope you all have a great day! 🙂

I am drowning.

Drowning in a pool of sorrow and confusion.

What have I done?

Slowly, slowly pushed her away.

Never saw, never knew.

Then she tells me of her sadness.

Friendship fading.

I am lost.

I have no recollection of such bitterness.

Such cruelty.

Was I that mean, that ignorant?

Love, ’tis love that caused my change probably.

I wait.

I wait to die or to live.

Die in sadness.

Live in happiness and regret.

She looks over at me.

A tear falls from her cheek as she lifts me up.

I look at her in shock.

She smiles.

She pulls me out.

I sob into her arms as we hug.

She has forgiven me.

A true friend she is. A true friend.

The dreaded squeaking tic

Hi everyone, I am normally able to mask most of my tics so that people do not really notice I have them. For instance, instead of randomly squatting, I’ll squat down to pick something up, or if I need to stick my finger in my belly button, I just pretend to itch it. But how do you disguise a squeaking tic?

My Tourette’s wants me to scream, but I just push out a squeak that feels like a scream. I’ve never had a tic like this. Some of my tics can be loud, such as coughing and clapping, but this one is high-pitched and annoying.

A few weeks ago, when it first started, I was squeaking, and my brother asked my dad if the noises were coming from our dog. My dad replied, “No, that’s your sister.” Sounds kind of weird, huh? Being compared to a squealing dog?

I was sitting in an office chair a few days after that, and I was squeaking. My brother then asked if it was my chair making the noise. So… now I’ve been compared to a dog and a chair. It’s a bit funny once you think about it. Funny, but still annoying. You know how people say, “I’m so overwhelmed, I need to just scream into a pillow!”? Well, for me, I really do need to scream!

Do you ever think about what us people with Tourette Syndrome look like to people who don’t have it? I’ve been thinking about it, and I get how our disorder seems so strange and hard to understand. We must be patient while raising awareness, because not everyone in our lives will accept us. Thanks for reading, and stay strong!

You can make a difference! Get involved today!

Here are a few recent links from the New Jersey Center for Tourette Syndrome. NJCTS offers many programs and services to the TS community. Please enjoy these links, sign up for an event or two, and let us know if there are any ways in which we can serve you better!

Tourette Syndrome Awareness Day will be centerpiece of weeklong advocacy campaign

Wednesday Webinar series continues with Feb. 29 presentation on OCD

Children’s book “Emily’s Tic” now available on Amazon.com

Parents have mixed feelings about New York students with mystery illness

Families sing praises about importance, value of annual family retreat weekend

Dare To Dream Student Leadership Conference poster contest — deadline March 1

Educator and Healthcare Provider of the Year Award nominations

Children’s Scholarship Award applications

Eighth annual family retreat weekend at YMCA Camp Bernie — June 8-10

 

Spread the Word! Support the Tourette Syndrome bill in Congress NOW!

Hey guys, as some of you may know, there is currently legislation in Congress that would amend the Public Health Service Act (introduced by New Jersey Congressman Albio Sires) with the goal of establishing regional centers of excellence across the country to conduct research into the cause, diagnosis, early detection, prevention, control and treatment of Tourette Syndrome and associated disorders.

Right now, the bill is in the beginning stages of a piece of legislation’s “life cycle.” Before any bill goes into debate by Congress and the Senate, they first are checked out by several committees. These committees investigate, revise and deliberate them before any further action is taken.

Unfortunately, the vast majority of resolutions and bills that are in this stage never make it out of committee. It is for this reason that we need all the help and support we can get in order to have this bill written into law. I’ve already voiced my opinion and contacted our state representatives. Now you guys have to do the same!

A simple and quick way to make your voice heard is to use the POPVOX system, which automatically allows you to write to your member of Congress in support of this bill. Here are five simple steps to take: Continue reading

The enemy has been defeated: Me 1, Anxiety 0

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.

~ Eleanor Roosevelt

Hello everyone. I haven’t posted for almost a week and a half. Our internet went out because our cable line, the whole line, was dead. So, we have a temporary line and we have it back. So, now I’m able to post on Twitch and Jerk daily once again and I can post on here weekly.

My tics, still, have only happened when I have gotten agitated. The problem with that is when I get agitated, my tics seem to try and make me hurt myself — like pinching, hitting head against something, etc. It has gone on and off. I haven’t been to the doctor in forever. My moms are setting up an appointment.

I have so much to tell my social anxiety therapist. She is so kind, and she has helped me so much. Last night, at Dungeons and Dragons, I did something that I thought I’d never do. Starting a conversation. But, I didn’t just start a conversation. I started three conversations with the same person. Continue reading

Speaking at the Dare to Dream Student Leadership Conference

Hey guys, I am so excited to tell you this! This year, for the third year in a row, I will be a keynote speaker at the Dare To Dream Student Leadership Conference at Rutgers University. For those of you who don’t know what it is, it is a convention for teenagers with disabilities.

There are keynote speakers who talk about what they have been doing and how they have learned to overcome and live with their disabilities, as well as small-group sessions where people talk about different things.

Last year, one of my classmates was a speaker in the small groups and talked about how to write a college resume. Anyways, I am so excited!!! I am going to talk about my Tourette’s, my OCD and the battles I have overcome. I will also talk about my dreams for the future.

I will be going with my old high school, and I can’t wait to see some of my old friends again!! Remember, keep your heads high guys. I know it can get hard, but there is always hope. Whenever a door closes, another one opens!

"Out Of Our Control" Tourette Syndrome documentary is done!

So I finally finished the documentary about Tourette’s and uploaded it to YouTube! I had quite the technology issues and had to export and re-export and upload and reupload each part a number of times. I am just so glad that it’s finally out and ready to be seen by the Tourette’s community! Feel free to share it!

The documentary is in five parts and is pretty darn long, but I figured it was better to make it long than to cut people out. I promised I would e-mail them to the president of our state’s Tourette Syndrome Association chapter, and she already has watched them and said it was awesome! She even wants to show parts of it at a meeting tomorrow if the area we are meeting in has internet capabilities, which I think is very exciting!

So here are the final five parts of the documentary! Enjoy! I’ll be posting more about the whole documentary process soon! Continue reading

Come up with your own Tourette Syndrome slogan!

We’ve all heard the popular Tourette Syndrome community rallying cry, “I’ve got Tourette’s, but Tourette’s doesn’t have me!” One of the many TS entities on Facebook, Help Spread the Word About Tourette Syndrome, has asked its more than 1,100 members to come up with their own slogans, and Teens4TS is joining that worthy bandwagon!

We encourage you to come up with your own saying and post it here as a comment for everyone to read. Teens4TS has received more than 10,000 hits since its inception in November 2011, so there are a lot of people out there looking to read what you have to offer! Who knows, it may be the next big thing used by the national Tourette movement!