NJCTS discusses Tourette Syndrome at Centenary College Abilities Day

HACKETTSTOWN — Spreading awareness of Tourette Syndrome and providing world-class resources is at the heart of the New Jersey Center for Tourette Syndrome’s (NJCTS) mission. This month, NJCTS took part in Abilities Day at Centenary College in Hackettstown.

Myself and volunteer Maddie Pucciarello discussed the programs and services of NJCTS with Centenary students, local teachers and school administrators.

Abilities Day was a wonderful opportunity for us to show students planning to become educators how education outreach provided by NJCTS can help them in their future careers to improve the lives of young students.

During the 150minute presentation, we shared information about NJCTS. Pucciarello, a graduate student in public health at Rutgers University, discussed her experience with Tourette Syndrome and how she became involved with the organization.

Tourette Syndrome is a neurological disorder characterized by involuntary movements or sounds known as tics. As many as 1 in 100 school-aged children show signs of TS, which is frequently accompanied by ADHD, obsessive-compulsive disorder, depression, anxiety or learning disabilities.

We are looking forward to returning to Centenary to deliver an in-service presentation for education students on the topic of Tourette Syndrome and its associated disorders.

For more information about Tourette Syndrome the Center and its Education Outreach Program, please visit www.njcts.org or call 908-575-7350.

Graduate students at Montclair State get tutorial on Tourette

On March 23, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) held a Graduate Student “Faculty” In-Serivce presentation at Montclair State University. Presented by Dr. Michelle Miller, more than 75 attendees — which included graduate students from the School of Psychology — were given a comprehensive look at Tourette Syndrome, ways to treat it, and ways to accommodate it in and out of the classroom.

The attendees described the presentation as “very informative & comprehensive” and an “excellent presentation with well-displayed, well-paced information.” To schedule one of these presentations at your location, please contact me at 908-575-7350.

Gina Maria Jones, M.Ed.

Education Outreach Coordinator

NJ Center for Tourette Syndrome & Associated Disorders, Inc.



Rage is really affecting my TS son

Hello, my name is Helen, and I am married and have four sons.  Our first son was diagnosed with TS at the age of 9.  No one in our family has TS that we know of.  We were lucky enough to only have one son with TS.  We were told 50/50 one of our other sons would have it.

Anyway, my son Billy is now 29 years old.  From nine years old till about 16, Billy was on meds.  He decided in high school he didn’t want to take meds cause they made him tired.  Billy, at the same time, started experiencing with marijuana and alcohol.  Billy graduated from HS and got into the school of engineering at Rutgers University after making quite a number of outstanding schools.

Freshman year went fine.  Sophmore year Billy decided to join the engineering fraternity.  His graes declined and he was put on academic probation.  At that time he started dating a girl named Kat.  She was a grade ahead of him and studying psychology.  Their relationship ended after three years because of Billy’s temper and drinking.

Billy then graduated and moved into the city for five years.  He had another girlfriend Tara that last almost three years with lots of fighting and drinking.  Billy has anger issues.  That relationship ended.  Billy decided he wanted out of the city and to buy a house.  He moved into a houser closer to me and my husband.

Billy had some problems with the house but also started dating a new girl named Gabby.  That lasted a few months when she broke it off because of Billy’s anger issues.  Billy came over for dinner Wednesday night and admitted he was depressed and ruined three relationships because of his anger issues.  He realizes he needs to see a TS doctor.  He is in the process of finding one.

My heart goes out to Billy.  I fear of suicide since he has used the term numerous times through the years.  He’s also hating his job at this time.  The word hate is used constantly in his language.  His brothers are afraid of him when he gets angry.  I believe his drinking is out of control and a way of medicating himself.  I have alcoholism in my family and I am very afraid that Billy is succumbing to alcohol.

It breaks my heart to see my son like this and feel like there is nothing I can do but be supportive of him.  Let him know we love him and will be there for him no matter what.  To come to us no matter what he feels.  I hope he finally  takes advantage of the TSA and joins blogs and talk to other people about his issues.  I wish he could only see how bad TS is for others.  His is mild compared to some adults and children.

I just read about “rage” on Facebook and that totally describes what Billy is going through. It is good to know that he can control it, if he puts his mind to it.  Then again, I wish he would stop drinking until he can control his rage.  I look forward to participating in this blog about TS. I should’ve done it years ago instead of sweeping the problem under the rug.

The “perfect” ending to the school year

One of the biggest internal struggles that parents of special needs children face is when…and how far…to “push” your child. Your goals are usually the same as any other child…to be happy, make friends, have others in their lives who love them and treat them well, get through school, and be as independent as possible. How you get them there can be the most complicated part.

One of my best friends is the most successful coach in college gymnastics. One of her many gifts is the ability to motivate and inspire…which doesn’t mean holding your hand…it involves giving you a little kick in the pants at times. In going through our most difficult years with our son, she was one of the only people I talked to about all that was going on here at home.

I was scared, and depressed much of the time…and frankly a lot more unsure of myself and down in the dumps than I had been before…thank you for hanging in there with me! I had young children, all my family lived at least 15 hours away, my husband was busy with a crazy job, and I was a NJ girl living in the south…I didn’t quite fit in. She became my family…my mentor, the voice of reason, and my best friend.

To sum up what I learned from all of my conversations with her…when you have a child that struggles, you can’t focus on the excuses. Your focus has to be on visualizing what they need to accomplish and get to work. For a child who has a health issue, it’s important to start early by educating them on their disorder, their treatment, and how to manage it…from appointments with Drs – to getting out and taking their own medication.

The world is not going to be kind to them at times, and they are going to get knocked down…that’s just a part of life. What children need to learn is how to pick yourself up, dust yourself off and keep moving forward.

Sounds simple…far from it.

Continue reading

7 strategies for highly successful teens

Vanessa Van Petten is the founder, CEO and lead writer for Radical Parenting.

Hi! Happy New Year! I’m so excited to announce a new life-changing program I have created for teens. In this fun, entertaining and inspirational talk I go over the 7 strategies for highly effective teens. This is nothing like your typical high school presentation. Here are some highlights:

  • Groundbreaking research insights about the teen brain and behavior
  • Hilarious and inspiring videos
  • Immediately applicable action steps to motivate and encourage teens from all levels
  • Relatable stories for teens to feel engaged and understood

I can’t give too much away, but in this talk we delve into both the lighthearted and serious issues teens face including:

  • Effective communication with peers, parents and teachers
  • Mastering the online environment — preventing cyberbullying, staying savvy online and building a digital reputation that lasts
  • School — life balance, reducing stress and finding the right outlets
  • How to have healthy relationships with the important people in a teen’s life
  • Planning for the future, smart college applications, resume building and finding your life passions

I am stoked about this new talk and have already booked out January, February and March at High Schools, youth conferences and Parent groups around the US. Please contact our manager Lynn Campbell for pricing and date availability at manager@radicalparenting.com.

Find out if we might already be coming to your city! And yes, of course, we have tween, parent and teacher versions!

Invitation to participate in Tourette Syndrome dissertation research

PLEASE NOTE: TSParentsOnline, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), and its directors and employees assume no responsibility for the accuracy, completeness, objectivity or usefulness of the information that follows in this blog post. None of the stated parties endorse any part of this post. It is merely being posted here for informational purposes only at the sole discretion and responsibility of Caitlin Kilmer.

My name is Caitlin Kilmer and I am a fifth-year clinical psychology doctoral student at Immaculata University. I am in the beginning stages of my dissertation and am conducting a study examining anxiety, stress and executive functioning in children 7 to 17 years of age with Tourette Syndrome.

I am inviting you to consider participating in my study. In order to participate, your child needs to be between the ages of 7 and 17 years of age and have a diagnosis of Tourette Syndrome. Child participants may not have a diagnosis of intellectual disability, serious mental health disorder (e.g., bipolar disorder), serious behavior disorders (e.g., conduct disorder), sensory impairments (e.g., blindness, deafness) or a major neurological disorder.

The study consists of a packet of information that you will receive in the mail. The packet will contain a consent form, an assent form, three questionnaires, a sheet to log tics, as well as a stamped return envelope. You will complete the consent form as well as one questionnaire. Your child will complete an assent form and two questionnaires.

You or your child, depending on age, will keep track of the frequency of his/her tics on a provided form for a one-week time period. After the one-week time period, all forms are to be placed in the stamped return enveloped and mailed back to the researcher. For participating in the study, your name will entered into a drawing to win a $50 gift card.

If you are interested participating in this study, I welcome the opportunity to discuss this with you by phone or e-mail. In addition, I would be happy to provide any further information you may require in order to make a decision; please contact me at ckilmer@mail.immaculata.edu or 610-457-9880, or my dissertation chair, Dr. Marie McGrath, at mmcgrath@immaculata.edu or 610-647-4400 ext. 3437.

Thank you for your time.

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.


With my college graduation coming up in three days, this seemed like a good time to share a couple stories. Now, you may have noticed that I haven’t posted for a week, but that’s because I was getting ready for this week’s post and of course GRADUATION. Yay!

Going through college with Tourette Syndrome has definitely made for an interesting ride. All the hard work I have put into my college career has paid off, but it hasn’t always been easy. I won’t say it hasn’t been without its rewards, though.

When I first started college, like most students, as freshman at West Liberty University I was living in the dorms just trying to acclimate to my new life. I had been going through a couple years of suppression where I had worked so hard to disguise my tics, that I couldn’t tic if my life depended on it.

This was all due to feeling humiliated at anyone seeing me tic, as many of them can be unsettling or distracting. It was as if that part of my brain had temporarily gone somewhat dormant to the point that if I did feel the need to tic, it felt alien and I almost couldn’t. (I don’t recommend this) Continue reading

“Tourette Syndrome: Coping With Difference” — Reflection

The following is the 6th and final part of a series of entries that, as a whole, comprise a paper titled “Tourette Syndrome: Coping With Difference” I wrote for a class I am taking at the University of Texas-San Antonio.

Read part 1 here.
Read part 2 here.
Read part 3 here.
Read part 4 here.
Read part 5 here.

Many times throughout this inquiry, I wanted to give up. I was overcome with emotion because we’re still new to Jacob’s diagnosis. Doing research is one thing; inquiring is another. I could research all day and crank out a paper full of facts about what Tourette Syndrome is.

If I had chosen to write about the specifics of having TS, I could have easily typed a hundred pages of facts. My paper would have definitely been so much easier to write, but it wouldn’t have made me see myself as the person I want to be.

This inquiry did something for me that nothing in my entire college education has done so far; this inquiry made me realize how I passionate I truly am about becoming a special education teacher. I wanted so badly to create an inquiry that would be able to explore the sides of Tourette Syndrome that I was the most unfamiliar with.

I, with all honesty, know that I did not meet my goal of finding that “magical” answer. There is no one answer to teaching Jacob to cope. I searched through several perspectives and not even my interviews proved to be “golden keys”. What I learned is that those things do not exist. Continue reading

A personal account of living with Tourette Syndrome & associated disorders, part 3: Quality of life

In my first two posts, I talked about what my life was like early on and the various phases of treatment I had to go through leading up to present day. Now, I’ll talk about how Tourette Syndrome can hinder one’s quality of life, especially when it comes to work,

Tourette Syndrome is not life threatening, but it can be living threatening — and what I mean by this is that it can seriously hinder you from living to your full potential.

Probably the most difficult time for a person with Tourette Syndrome is the period of transition from school to the workforce and life, because Tourette Syndrome really hinders you during these periods of significant transition. For people with Tourette Syndrome this period is commonly referred to as a “transition cliff.”

I know this as a fact because right from the time I graduated university to the time I was diagnosed and started treatment for Tourette Syndrome some 15 years later, I was in a void of not being able to function properly — a period where I had various jobs, many of which were part-time, so my career development suffered immensely.

Many aspects of Tourette Syndrome including the mental anguish of emotions that we go through on a daily basis are very difficult for someone who doesn’t have the disorder to understand, which is why properly educating people about the disorder is very important. Continue reading