Laugh out loud

Ever have one of those laugh or cry moments? Tourette Syndrome can be frustrating, overwhelming, maddening, etc., but it can also be funny or silly. I’ve had people ask me this question soooo many times and I’m thinking: Where do I start? Do you want the manual?

SO WHAT TICS DO YOU HAVE?

tumblr_inline_mnn48ppweM1r1ma4eI love the above meme because it illustrates the answer to this question so perfectly. What I usually do when asked that sort of question is just rattle off the first dozen or so that come to mind.

So the meme out there these days for all of us Touretters is Tourette’s Toucan! Some of them are funny or awkward, some are just irritants that we experience, and mostly all of them are relatable. If you click on the link attached to the site name and click on “Memes only” in the bottom right hand corner, you can take a look at all of the ones posted so far, but for today I’m going to name a few moments of my own. If you don’t have TS or don’t know a whole lot about it, some of the memes may be confusing, so feel free to ask! Continue reading

Support kids with TS at the NJ Walks For TS at Mendham on November 23, 2013

Please consider helping the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) support the 1 in 100 kids with TS and associated disorders. If you live in or around New Jersey, why not attend the NJ Walks For TS at Mendham on Saturday, November 23? Or, if you can’t attend, why not consider supporting it with a donation? Here is more info:

“Why me?” doesn’t exist for my youth ambassadors

sarahannapresentation1Don’t ever believe that Tourette Syndrome will prevent your child from achieving great things. Last year, I wrote about my son and oldest daughter with Tourette Syndrome. I mentioned that my daughter was diagnosed at age 11 and never asked “why me?”

This year, my other daughter was officially diagnosed with Tourette Syndrome at age 12. We knew for some time that she had it, but up until this year, her symptoms were pretty mild so we didn’t take her to the doctor until now.

Once again, I am blown away by the strength and character my children display in regard to Tourette. Sarah also never asked, “why me?” Instead, as soon as she was diagnosed, she asked if she could become a youth ambassador for Tourette Syndrome to help educate others. Sarah’s older sister, Anna, was trained as a youth ambassador last year and gladly trained Sarah.

This week, not only did Sarah get the chance to give a presentation, she gave 6 presentations! Sarah and Anna worked together and presented to six classes in their middle school, back to back. They did an awesome job! By the end of the day, at least 150 students (and a few teachers) had a much better understanding of this disorder.

The kids loved the presentations and asked great questions. The guidance counselor sat in for the first presentation. He asked how long the girls had been doing this. He could not believe that it was Sarah’s first time.

I know my children will be very successful in their lives. Tourette Syndrome taught my children they can accomplish anything if they try hard enough. Sometimes, they just have to go about it a little differently than others.

sarahannapresentation2

Tonight’s Wednesday Webinar has been postponed

The New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) Wednesday Webinar, “Diagnosis and Treatment of Tourette Syndrome from a Latino Perspective” originally scheduled for tonight has been postponed. It will take place this fall as part of a multiweek series on TS across cultural boundaries.

While NJCTS regrets any inconvenience this might cause, it is excited to expand this program to include an exploration of the issues affecting the diagnosis and treatment of TS in the African American, Asian and Latino communities. The date for this thought-provoking series will be announced in the weeks ahead.

In the meantime, please be sure to check out the Wednesday Webinar Archive for any presentations you might have missed or would like to enjoy again.

Happy Father’s Day!

It’s rainy and chilly outside. Unusual weather for this time of year in the Northern Panhandle, but I don’t mind. I’ve mentioned several times how my mum has been a great help to me throughout my years in dealing with Tourettes. I’ve talked about how she’s supported me, guided me, taught me to stand up for myself, etc., but today I want to talk about my dad.

Whatever mysterious gene that Tourette Syndrome comes on came from his side of the family, along with OCD. Several of the oddities that I’ve experienced over the years, he’s gone through himself. Having TS can be very lonely when you’re the only known one in the family who has it, so it’s kind of cool when we find something else in common.

Throughout my college career, as I’ve mentioned before, I’ve experienced some prejudices that I didn’t know how to or couldn’t deal with on my own. My dad has come to class with me when I felt like I couldn’t be alone, and he’s gone to bat for me when someone wouldn’t give me the accomodations I needed or didn’t seem to “get” that having Tourettes can be difficult and can sometimes make certain everyday activities hard to deal with such as: ticcing in public, standing or sitting still for long periods of time, being quiet, sensory processing, etc.

My dad, my mum and various other peoples have been responsible for the ongoing process of learning to be comfortable with myself and my tics and being able to stand up for myself. I don’t believe in being quiet or sitting on the sidelines while someone gives me a proverbial beating. I don’t always know what to say, but, chances are, someone else does.

The important thing to remember is each time someone sticks up for me and/or I stick up for myself, and promote Tourette Syndrome awareness, I’ve gained another notch in my belt of advocation. Being an advocate can be something as simple as telling someone you have Tourettes, because you’re showing that you’re not ashamed of who you are.

I had one incident at a place of employment when I was a sophomore in college where a supervisor got upset with me for calling home because my tics were so bad that I couldn’t be still for a second and I didn’t know what to do. This was also during a time when I was less than OK with expressing my tics in public. When I tried to explain that I had obtained permission to call and that I had TS, he refused to listen and told me to go home.

Try as I might, I couldn’t hold back my tears. My mum who was on the phone this whole time listening to the exchange told my dad what was happening and within 15 minutes he was up there speaking on my behalf to the man who had committed the transgression. If it hadn’t been for my dad that day, I don’t know what I would have done.

In closing, I just want to remind everyone that everyone out there who has Tourette Syndrome or knows someone with does is covered under that American Disabilities Act. That means no one is allowed to discriminate against you because of your disability.

Poetry: “Mocking Bird”

This is a poem my daughter wrote back when she was 10 in 5th grade. It was written at a time when she was facing a lot of bullying, mainly from the principal at her school. The ending lines talks about a guardian angel. To me that angel comes in the form of NJCTS

“MOCKING BIRD”

The penetrating shrieks it makes, traps you in a horrible game of risk.
It’s toxic acid, spitefulness punches a disintegrating hole of misery
in your heart.
They travel in flocks, looking for victims to mock and tease.
Mocking, mocking always teasing.

Soon they chase you out of safety, crushing your self confidence
leaving you to cower in fear.
You set sail as an outcast in the ocean of loneliness.
Hoping your Guardian Angel will lift you up once more.

Get your “There Ain’t No Can’t” bundle today for only $10!

Jeff Feldstein packageThe “There Ain’t No Can’t” product package was created by Jeff Feldstein, whose son has Tourette Syndrome, and features a hat, T-shirt and a motivational book titled “There Ain’t No Can’t… A Tribute to a Child’s Struggle & Colossal Achievement.”

The message of the 143-book, written by Feldstein, is simple: The true secret of obtaining ANYTHING you want in life starts with a DESIRE, not a need. The story of his son, Noah, will give you back your desire to WIN… AT ANYTHING! That message is repeated in artful form on both the T-shirt, which is available in black and grey, and the hat, which is available in black and tan.

The black hat is bundled with the grey T-shirt, while the tan hat is bundled with the black T-shirt. T-shirt sizes are available in small, medium, large and extra large. Both bundles are packaged together with the book for an extraordinarily low price of just $10.

This package, which usually retails for $28 but has been made available to the Tourette Syndrome community at this special price, makes for a GREAT gift for family and friends! To have a bundle mailed to you, visit the There Ain’t No Can’t website, purchase it via PayPal and have it shipped for the total price of $16 ($10 plus $6 shipping per bundle).

WEDNESDAY WEBINAR: June 19 — “Diagnosis & Treatment of TS from a Latino Perspective”

seminars-headerTourette Syndrome – which affects all ethnic groups – has in particular impacted the Hispanic-American community in urban areas of New Jersey, the nation and the world.

The next New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) Wednesday Webinar – “Diagnosis and Treatment of TS from a Latino Perspective” – on June 19 will include a discussion of the diagnosis and treatment of TS in children and adolescents.

Both behavioral and pharmacological approaches will be examined. There also will be a consideration of the unique aspects of mental health understanding and treatment within Latino culture.

This webinar will be presented by Dr. Richard Zakreski and Laura Zakreski. Dr. Zakreski earned his PhD in clinical child psychology from the University of Virginia in 1982 and maintains an independent practice – specializing in the treatment of children, adolescents and college-age adults – in Shrewsbury and Freehold, N.J. Dr. Zakreski specializes in the diagnosis and treatment of neurodevelopmental and neurochemical disorders – including ADHD, TS, anxiety/OCD and Asperger’s Syndrome.

Laura Zakreski is a rising second-year PsyD student in the Clinical Psychology program at the Massachusetts School of Professional Psychology. She is working on a dual concentration in Children and Families of Adversity and Resiliency and in Latino Mental Health.

NJCTS launched the monthly Wednesday Webinar series, which draws an audience from 48 states and 13 countries, in 2008. The series, offered at no cost to participants, features online seminars for parents, educators and professionals on topics of interest to the TS and associated disorders community.

Professional development credits are given upon verification of attendance and completion of an exit survey. Credits are distributed by mail one week after the webinar. You may register for this webinar or view/download past webinars. More information about NJCTS is available by visiting www.njcts.org.

My TS, My Story: The journey from diagnosis to self-acceptance

Part of the Tourette Syndrome Foundation of Canada’s mission is to help individuals affected by TS through programs of self-help. That is why our posts this week will focus on self-understanding, self-knowledge and self-awareness. Today’s post is from Laura and PeterL.

A common question that TSFC staff and volunteers get is how to come to terms with a TS diagnosis. One recent form of this question was: “How do I help a child to come to terms with his diagnosis; he is 8 and is angry about being told he has Tourette Syndrome.”

Who better to talk about the journey from diagnosis to self-acceptance, than a mom and son who have made the journey themselves? Here is an answer to this question provided by longtime volunteers, Laura (mom) and Peter (Laura’s son).

Laura-and-Peter-LockeWhen a child has been newly diagnosed with Tourette Syndrome, perhaps the best advice I could give to parents is not to give up hope yourself. Your attitude will set the tone for your child’s attitude.

Our son Peter, who is now 21, was diagnosed with TS when he was about 10 years old. By that time he was quite aware that he was “different” from the other kids at school, and so in many ways I think the diagnosis was a relief. At least, that is how we framed it to him as his parents. Continue reading

I want to help others who need help with TS

I happen to run across this site when I was searching on the web about tics and twitches for myself. I read some of the stories about how the parents are trying to cope with the behaviors their kids are going through, and I can relate to every one of them. I would love to participate because I have been living with tics and twitches all my life.

As far back as I can think of, about 5 or 6 years old, my mom was taking me to a few different doctors that could not put their hands on what was wrong with me. But a few years later, my mom stated to me she was told I have a form of tics and twitches, and maybe a mild case of Tourette.

I was not that educated on any of these problems. I have been going through this all my life, but now at the age of 42, the tics and twitches are getting even worse. I can’t control what I do at times because when I do the tic, it gives me a sense of relief and keeps repeating itself. Not sure why in my older age mine is getting worse.

I’m constantly asked, “Why do you do that?” I let them know, and sometimes I am asked if I have allergy problems. Sometimes I am teased about it. I am a teller at a bank, and I love what I do because I love helping people. At least half of the day, I am asked by customer why I do what I’m doing.

I sniff all day, I twitch my nose, I squeeze my hands close, I tend to take my arm and hit my breast with it, I hit my back side from time to time, I nudge my neck from side to side, I squeeze my feet, and last I squeeze the top part of my legs close tightly. These are all the things I go through on a daily basis and have been doing them all my life.

I never knew if there was medicine that can help me with this condition or even slow it down because it does become annoying at times. I cry all the time hoping one day they will stop. I would love to tell my story to anyone with this condition or have kids with this condition.