Cresskill students get lessons about Tourette Syndrome from NJCTS Youth Advocates

NJ Center for Tourette Syndrome’s (NJCTS) Youth Advocates inspired, educated and spread awareness about Tourette Syndrome to a total of 1800 Cresskill, N.J., students from May 11 through May 15, as part of a weeklong TS awareness campaign in the district.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It is estimated that 1 in 100 children show signs of the disorder—as many as 20,000 school aged kids in New Jersey alone. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, and learning disabilities. Kids with TS are at increased risk for bullying and report feelings of isolation due to their condition. NJCTS Youth Advocates share their experiences with TS and spread messages of encouragement, acceptance, and self-advocacy.

Drew Friedrich spoke about TS to over 600 high school and 400 middle school students on May 11. Drew is 22 years old, a recent graduate of County College of Morris, has been a Youth Advocate since 2012, and was a coach at the first annual Tim Howard Leadership Academy last August.

Drew did an amazing job connecting with the students and was comfortable in his skin, TS and all. He showed students that anything is possible and being different can be empowering. The students asked wonderful questions and started great discussion. Continue reading

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.

Spotting Tourette in the Classroom, Part 2: So what’s a teacher to do?

Spotting Tourettes in the Classroom

Everyone remembers that kid in class who made weird noises to annoy the teacher. But what about those instances where the noises aren’t meant to drive the teacher crazy? Is it possible a student might be dealing with Tourette Syndrome? How do you know if it’s a Tic Disorder, Tourette, or just another attempt to annoy everyone around him? Today we’re going to discuss what teachers can do properly when they encounter Tourette in the classroom.

Once a teacher realizes the child has symptoms that match a tic disorder or Tourette, there are basic accommodations that can be made in the classroom. Some of these can be best made with IEPs (Individualized Education Plans) or in basic, quiet changes only known by the teacher and student. Here are a few good tips I’ve found:

From Northern Illinois University College of Education

  • Have a duplicate set of text books for the child to keep at home. This can help students who might have missed details of the text because of the ticcing. Just think, if your head is constantly jerking or your eyes are constantly blinking, it can be quite distracting in the classroom. You might need to go over the material again later.
  • Use a seating chart to allow for any movement tics. This is especially helpful if the child has a tic like jumping or jerking, something where she needs to move, and it will lessen the distraction to other students.

From the Newtown PAC Family Resource Center by Susan Conners, M.Ed., Education Specialist, TSA, Inc.

  • Give the child frequent breaks out of the classroom to release tics in a less embarrassing environment, e.g. the bathroom, the drinking fountain, a real or made up errand to run. It’s important to have a safe place where the student can go to release his tics, somewhere where he won’t feel embarrassed to let out the extra energy burning up inside of him.
  • Do not penalize students for poor handwriting. Provide alternatives for doing tests, assignments, etc. (orally, taped). It can be difficult to write well when your hand is constantly moving on its own accord. This is an accommodation that might be best discussed in an IEP meeting (a meeting between the teacher, any school staff involved in this part of the student’s education, such as school psychologist, counselor, principal, and resource teacher, and the parents). Continue reading

10 Common Tourette’s Questions & Answers, Part 7

Living with neurological disorders can be full of challenges for both children and adults. The good news is that life with these disorders can still be filled with joy and adventure. It just takes some creative thinking and flexibility to get there, and that’s what I’m here to help with! Visit me on my own site, brittanyfichterwrites.com, if you want to know more!

10 Common Questions and Answers About Tourette Syndrome

Tourette Syndrome, despite all the information we’ve gained in the last 15 years, is still a hard topic to find information on. Unfortunately, the media has chosen to pick out the parts of the disorder that it deems funny, and the rest of the information seems tucked away in textbooks on dusty corners of doctors’ desks.

Well, no more. Here is the 7th of 10 questions that touch on topics I’ve talked about with parents of children (and individuals) with Tourettes multiple times. You want a quick, easy answer to share with someone who doesn’t understand? Hopefully, I’ll have it right here as part of this series!

In case you missed them, here are links to the first 6 parts:

Part 1
Part 2
Part 3
Part 4
Part 5
Part 6

Also, if you want more information about a certain topic, I’ve linked related posts underneath each answer. My related posts will have more sources that you can look up on the topic if you so desire.

Can People with Tourettes Go to School or Hold Jobs?

Continue reading

WEDNESDAY WEBINARS: TS expert Sue Conners to present education accommodation series January 15 and 22

The 2014 slate of the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) Wednesday Webinar series will kick off with a bang on January 15 and 22 when note Tourette Syndrome and education expert Susan Conners, M.Ed., hosts a two-part series on accommodations for students affected by TS.

Tourette Syndrome is an inherited, misdiagnosed, misunderstood neurological disorder characterized by involuntary sounds and movements known as tics that affects 1 in 100 children and adults, according to the Centers for Disease Control and Prevention (CDC).

SueConnersConners, an authority on educating students with TS who serves as a go-to-source for major networks and other media outlets in their coverage of Tourette, will present “The 504 Accommodation Plan vs. the Individualized Education Plan (IEP)” from 7:30 to 8:30 p.m. (EST) on January 15. The webinar will discuss the differences between the plans, and help parents and educators understand which is most appropriate for a student with TS, an associated neurological disorder or other special-needs condition.

“Parents and educators alike are often confused about the process of obtaining educational services for struggling students regardless of their disability,” said Conners, who in August 2012 presented a two-part webinar series on educational rights for NJCTS. “This webinar will break down all the options available, explore who is eligible and why, and explain this in uncomplicated, clear terms to hopefully make the process simpler for all involved.”

On January 22, also from 7:30 to 8:30 p.m. EST, Conners will return with “Accommodations, Strategies and Techniques for Working with Students with Tourette Syndrome.” This webinar will propose many creative accommodations and strategies for working with TS children in the classroom and at home.  It also will include strategies for accompanying disorders such as OCD, ADHD, Executive Dysfunction, sensory issues, learning disabilities and dysgraphia (writing deficits).

“Accommodations are intended to level the playing field for students with disabilities,” said Conners, author of The Tourette Syndrome/OCD Checklist: A Practical Resource for Parents and Educators. “Tourette Syndrome and its associated disorders are very complex and not always easy to understand.  They are also disorders which wax and wane.  This webinar will offer concrete and creative accommodations that have been successful in assisting students with all of these disorders.”

NJCTS’ Wednesday Webinar series was launched in 2008 and today draws an audience from 48 states and 15 countries. The series has featured more than 50 online seminars for parents, educators and professionals on topics of interest to the Tourette Syndrome and associated disorders community.

To receive a Professional Development Certificate or a Certificate of Attendance for attending any of these live webinars, there will be a $20 nonrefundable fee to receive the certificate. For more information, please call 908-575-7350 or visit www.njcts.org.

WEDNESDAY WEBINARS: December 11 — “Dealing with Holiday Anxiety & Stress”

Over the next several months, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) will host four brand-new presentations as part of its acclaimed Wednesday Webinar series, which was launched in 2008 and today draws an audience from 48 states and 15 countries.

The series features online seminars for parents, educators and professionals on topics of special interest to the Tourette Syndrome and associated disorders community, but often also applicable to the general public. All webinars run for 1 hour and take place at 7:30 p.m. EST.

On December 11, Dr. Michael Osit – a licensed clinical psychologist who has worked with children and adolescents for more than three decades – will present “Holiday Stress: Coping Skills for Parents and Kids.” This webinar will help parents identify signs of stress in themselves and their children, causes of stress, and ways to prevent and manage holiday-related stress. For more information or to reserve your webinar seat, please click here.

On January 15, Susan Conners, M.Ed. – an authority on educating students with Tourette who serves as a go-to source for major networks and other media outlets in their coverage of TS – will present “The 504 Accommodation Plan vs. the Individualized Education Plan (IEP).” This webinar will discuss the difference between a 504 plan and an IEP, and also will help parents and educators understand which one is most appropriate for a student in question. For more information or to reserve your webinar seat, please click here.

On January 22, Susan Conners will return with “Accommodations, Strategies and Techniques for Working with Students with Tourette Syndrome.” This webinar will propose many creative accommodations and strategies for working with TS children in the classroom and at home.  It also will include strategies for accompanying disorders such as OCD, ADHD, Executive Dysfunction, sensory issues, learning disabilities and Dysgraphia (writing deficits). For more information or to reserve your webinar seat, please click here.

And on February 26, Dr. Brian Chu – an assistant professor in the Department of Clinical Psychology in the Graduate School of Applied and Professional Psychology at Rutgers University – will present “Getting Unstuck: How to Overcome Anxiety and Mood Problems with Behavioral Activation and Exposure.” This webinar will describe how evidence-based practice strategies, such as behavioral activation and  exposure, can be used to help pre-teens and teens develop a more active coping approach toward life. For more information or to reserve your webinar seat, please click here.

To receive a Professional Development Certificate or a Certificate of Attendance for attending any of these live webinars, there will be a $20 nonrefundable fee to receive the certificate. You may also view/download past webinars, or find out more information about Tourette Syndrome and the programs and services of NJCTS by visiting www.njcts.org.

What causes rage episodes?

The following is the second in a three-part series first published on the blog of the Tourette Syndrome Foundation of Canada. Read the first part here.

Some people with Tourette Syndrome+ experience rage episodes or neurological storms. While it may be tempting to think of a neurological storm as a “rage tic” or an “anger tic,” this is inaccurate. Rage episodes are not actual tics. Research suggests that individuals who have TS only (this means that they do not have any co-occurring conditions like ADHD or OCD) rarely, if ever, have rage episodes. Even in TS-only individuals with severe tics, rage episodes are rare.

Rage episodes are most likely to occur when a person has TS+, that is TS and other conditions called co-occurring conditions or co-morbidities. A child or adult who has TS and co-morbidities such as depression, OCD and ADHD is “at the greatest risk” of having a neurological storm. The greater the severity of the symptoms of the co-occurring conditions, the greater the likelihood of the anger attack. In sum, rage episodes are related to co-occurring conditions, not to the tics themselves.

If you think about what a person with say, ADHD, OCD and TS experiences, it is not hard to understand why someone with TS+ is most likely to have a rage episode. Drs. Budman and Bruun explain: “imagine how the impatience associated with ADHD, when combined with the rigidity and need for perfection of OCD [and the symptoms of TS], can cause some to be much less able to regulate their anger.”

How often do rage episodes happen to a person? Continue reading

Collaborative classes helping Ben make most of public school

I had a dream the other night that I was in court suing my son’s school district. I had won the action, but my lawyer had forgotten to tell me. When I realized that I had won, I couldn’t believe it, and to top it off, the school district admitted that they had been terribly wrong in the way they treated my son.

Although in “real” life I did not sue the school district, I was forced by circumstances to hire an attorney to receive the rights that were due to my son. I wanted the school district to pay for Ben to go to a private school where teachers would understand him, and his academic difficulties.

I was tired of the constant phone calls from the school about my son’s insolent behavior and lack of academic motivation, despite my numerous attempts to try to get the school to understand Ben and the mysterious interplay of his TS, ADHD and learning disabilities.

We met at the beginning of every year with the teachers to discuss Ben’s challenges and how it affected him both academically and emotionally. Most of the teachers were thoughtful at first, but then grew tired of having to rein in Ben and simply sent him out of class as the preferred mode of discipline.

In fact, because my son is very handsome and athletic, and has a “cool” attitude, most of his teachers thought we were just trying to coddle our troubled son and avoid discipline. And of course, none of the nonacademic teachers ever received Ben’s IEP, so when he was kicked out of various nonacademic classes (music, band, gym) for making noises or faces at the teacher, upon our advising the teachers that he had TS, we were met with skepticism.

I was told on more than one occasion that the school psychologist would have to sit in on the class to see if the behavior was a tic or not. I was even told by school personnel, whose main goal it seemed was to put my son in perpetual detention, that my son really didn’t have TS. Continue reading