NJCTS News September 2009

Ask the Expert: Back to School Tips from Dr. Lori Rockmore, Clinical Director- NJCTS Rutgers University TS Clinic

What’s the most important thing for kids with TS and their parents to remember going into a new school year?

When going into a new school year, or any other new experience, it is important for kids and their parents to think about a term called anticipatory anxiety. Anticipatory anxiety is the term we use to explain the anxiety or feelings of being nervous before an experience actually happen. These nervous feelings, most often, are much stronger than the feelings we will actually experience when we are in the real situation. This usually happens because we are predicting the situation to be more negative than it actually will be.

One exercise that I like to recommend to parents to do with their children is to make predictions about what the new school year will be like prior to its beginning and then come up with a list of what the actual school year is like after experiencing it for one week. This is a great exercise to teach the concept of anticipatory anxiety and for drawing upon for future reference when your children are entering into new situations again in the future.

What are some signs of anxiety parents can look for?

Knowing when your child is experiencing anxiety is not always an easy task. Symptoms of anxiety are all too often suffered in silence. This is because they are usually not observed by others, but instead internally occurring inside the sufferer’s body and mind. Symptoms of anxiety include physical sensations, thoughts, and behaviors. The physical sensations of anxiety can include stomach discomfort, headache, shaking, a fast or racing heart, shortness of breath and sweating. Individuals who are anxious, additionally experience anxious thoughts that can include such beliefs as “I can’t do this,” “The other kids are going to make fun of me,” “I’m going to fail,” fears of leaving the house or one’s parents, or any other thoughts related to fears the child is experiencing. The more observable behaviors that go along with anxiety are those of avoidance in which the child does not want to or resists engaging in activities, such as school, that they once engaged in. It is usually these avoidance behaviors that cause the greatest amount of difficulty for the sufferer’s parents and the school, so it is important for parents to recognize their child’s anxiety prior to these avoidance behaviors starting.

The best way to know if your child is anxious or having any other strong feelings about situations going on in their lives is to have an open style of communication with them. This means creating an environment in which your children feel comfortable talking to you in an open and accepting way about both comfortable and uncomfortable material. Additionally, if you suspect that your child may be suffering from any of the previously mentioned signs of anxiety it is ok to ask them directly and seek help from a professional if needed.

What advice can you give to a child with TS who encounters a bully?

The advice to a child with TS, or anyone else who encounters a bully, is to not keep it to themselves but to tell a trusted adult. Bullies love to bully in secrecy, but once an adult is made aware of the situation they usually stop.

How important is it for children with TS to establish a good routine during the school year?

Individuals with TS tend to function at a more optimal level when they have adequate amounts of sleep, good eating habits, and stay healthy. Good routines include regular bedtimes and times for getting up in the morning that are consistent, even on the weekends, eating three balanced meals a day with 1-2 snacks in between and a regular exercise routine. Routines are, in general, good for most people, but for the individual with TS it is even more important if they want to be at their best.

What advice do you give to students returning to the classroom?

Try to think about all of the aspects of school that they enjoy, even if it is only one or two things. Focusing on the positive or even neutral aspects of school can offset any of the negative thoughts going through one’s head. I would also recommend getting into the sleep schedule of school 1-2 days prior to it beginning so this way it is not such a big shock on the first day. Additionally, if your child has some anxiety regarding having new kids in their classroom and the possibility of them saying something about their tics, it can be helpful to rehearse with your child some brief statements that they feel comfortable saying if they are questioned.

I wish all of you a very happy 2009-2010 school year! -Dr. Lori Rockmore

We have established a satellite of our highly regarded NJCTS- Rutgers University TS Clinic at St. Clare’s Hospital in Denville. The groups below will run concurrently and are designed to provide support for the entire family. Group size is limited, so early registration is advisable.

  • Who: Children with TS, their parents and siblings
  • When: 10 weeks beginning on October 6th – 7:30 p.m.
  • Where: St. Clare’s Hospital, Pocono Road, Denville
  • Cost: Flat fee of $200 per family to participate in one or all of the workshop offerings
  • Register: Rutgers GSAPP 732-445-6111 ext. 930

The next meeting of the NJCTS Young Adult Program will take place on Sunday, October 25 from 1-4 p.m. at Rutgers University. The subject of this meeting is “Advocacy: How to best communicate information on TS to police and emergency responders.” A local police chief, and father of a son with TS, will share tips on how to explain your condition when dealing with law enforcement and security agents. EMTs will offer advice on what to say about TS during emergency situations. Group discussion and role playing will be used to simulate these encounters.

In prior meetings, we heard from a 14-year-old about his experience in educating more than 500 of his peers on TS and we brainstormed how to tell teachers, friends and even strangers about TS. And we had a lot of fun in the process!

The Young Adult Program is open to individuals with TS between the ages of 14 and 35. The aim of the program is to help develop skills, and empower individuals to advocate for themselves and others with TS. There is no cost for the program but registration is required by calling 908-575-7350.

Our Fall Webinar Series will kick off on September 30th with “Study Skills for Success” back to school strategies for kids with TS. Our presenter is Cheryl Ludwig, a speech pathologist, educator and mother of three children with TS. Co-presenter Janine Howley, special education teacher, will use her 20-plus years of teaching experience to answer questions from webinar participants.

Register for this Webinar today by visiting www.njcts.org.

After a brief summer hiatus, our TS support groups resume meeting in the weeks ahead at the following locations. Please call 908-575-7350 for more information.

  • Sept. 8 Middlesex County Support Group JFK Hospital, Edison
  • Oct. 1 Atlantic/Cape May County Support Group Atlantic City Medical Center, Atlantic City
  • Oct. 5 Somerset/Hunterdon County Support Group Somerset Medical Center, Somerville
  • Oct. 5 Burlington/Camden County Support Group Virtua Medical Center, Voorhees

NJCTS is again partnering with colleges throughout the state to offer workshops on TS and associated disorders for school professionals and other interested parties. Professional development credits will be offered. Teachers, nurses, child study team members and parents are encouraged to attend.

  • Oct. 1 Raritan Valley Community College 6:00pm – 9:00pm Thursday Presenter: Cheryl Ludwig, MA, CCC-SLP Course # CRN 12571 AH402-10, Cost $59.00 Register at: www.rvcc.edu/cce NJCTS Young Adult Program Wednesday Webinar Series Support Groups Resume Meetings TS Educator Workshops
  • Oct. 17 Bergen Community College 10:00am – 1:00pm Saturday Presenter: Ann L. Deutsch, MSN Course #SD 759, Cost $50.00 Register at: www.bergen.edu
  • Oct. 26 Ocean County College 4:00pm – 7:00pm Monday Presenter: Janine Howley, MA Course # SRED-107-01, Cost $59.00 Register at: www.ocean.edu or 732.255.0477
  • Oct. 29 Bergen Community College 4:30pm – 7:30pm Thursday Presenter: Ann L. Deutsch, MSN Course #SD 759 Cost $50.00 Register at: www.bergen.edu

Volunteers are needed to help man booths at two important upcoming New Jersey conferences:

  • Oct. 28: Annual School Health Conference Edison
  • Nov. 5-6: NJEA Teachers Convention Atlantic City

If you can be available for a few hours on any of these dates, please call 908-575-7350. Your time will be well invested by sharing TS information with educators, nurses and doctors at these conferences. Call us today!

NJCTS would like to extend a big thank you to some of the volunteers who have given their time recently to help prepare important mailings.

  • Patti and Stephanie Kahler
  • Liz and Michael Cannizzaro
  • Steven Korn
  • Wayne Podolsky

Your help is greatly appreciated!

NJCTS Sharing Repository interviews and sample collection will be held on September 23rd, 24th, 25th and October 28th, 29th, 30th.

Dr. Robert King, Professor of Child Psychiatry, Yale University and Medical Director of the TS/OCD Clinic at the Yale University Child Study Center will be interviewing families who would like to participate in the NJCTS Genetics Sharing Program.

Schedule your appointment with Dr. King by emailing the repository at familystudy@biology.rutgers.

n 2009 NJCTS awarded the annual TS Children’s Scholarship to two outstanding high school seniors. Both recipients were selected for their academic achievement, community service and accomplishments as an individual with Tourette Syndrome. Benjamin Miller, who graduated from the Dwight-Englewood School in May, served as National/International Affairs Section Editor of his school newspaper (Spectrum); played guitar and bass in the Jazz-Rock Ensemble; competed as a discus, javelin and shot put thrower; wrote for the Dwight-Englewood literary magazine; served as an assistant teacher for religious education and worked as a counselor at URJ Joseph Eisner Camp.

Syed Muzzamil, who graduated from North Brunswick Township High School, served as student government president; played varsity golf; participated in the Model U.N. program; was a member of the National Honor Society and was a member of his school’s robotics team. Muzzamil took part in the Robert Wood Johnson Mini-Medical Seminar and volunteered at St. Peter’s Hospital in New Brunswick, the physician office of Dr. Saleha Hussaidn and the Muslim Center of Middlesex County.

NJCTS wishes all of our scholarship applicants success in their future endeavors.

Thought you’d want to know, Brad Cohen- award winning teacher, author and subject of the Hallmark Hall of Fame movie Front of the Class visited New Jersey on September 1st. He spoke before a group of several hundred educators in Vernon Township. In conjunction with Brad’s presentation, NJCTS leadership had the opportunity to meet with the District School Superintendent Dr. John Alfieri and his staff.

Our school in-service program leads the nation in direct training to thousands of teachers on TS. We thank Vernon Township’s Board of Education for bringing positive attention about Tourette Brad Cohen & Kim Rice Syndrome to its teachers and staff.