Action Needed

To see the number of signatories and to read some of the comments posted so far, click here.


We have an exciting opportunity to influence how children with Tourette are supported in school in the state of New York.  You can help.

This past June, one of our teens in the Greater NY chapter was expelled from a summer music camp due to coprolalia. It was a traumatic experience for him and his family, but the story turned out to have an unexpected silver lining. I’ll let his mother, “Sophie,” explain:

After my son, “Malik”, was expelled from music camp in June because of coprolalia, I realized that it was going to be really important to get Tourette training set up for his next music camp in July. I called the July camp director and explained what had happened in June. I was nervous, because our school district had fought us tooth and nail on our requests for Tourette education.

But to my amazement, I received a surprise email from Joanne LaCrosse, a high-level special education official at NYSED (New York State Education Department), which runs the July camp. Joanne, the head of Special Education Policy and Professional Development, first congratulated my son on his acceptance into their very competitive program. Then she explained that upper level leadership of the State Education Department had asked her to assist in providing training on TS, to ensure that Malik would have a positive experience at the camp.

What a breath of fresh air! The training of both staff and campers took place and was extremely helpful. Joanne actually drove out from Albany in person, twice, once to assist with staff training, and another day to assist with peer training! Malik had a wonderful experience at the program, thanks to her support.

In my thank-you letter, which I sent to the assistant commissioner for special education, Christopher Suriano, I explained how helpful the training had been for Malik’s successful experience at the NYSED camp, and asked him to meet with Sue and me, so we can can describe the difficulties that many families in New York State have experienced, trying to set up Tourette education at school for our children.

To our delight and surprise, the answer came back that YES! The assistant commissioner would meet with us!

We have consulted with, and obtained 100% support, from the four other TAA chapters in NY State, as well as the members of the NYS Medical Centers of Excellence in Tourette Syndrome. Representatives of each chapter, as well as the NYS Centers of Excellence, will be attending the meeting in Albany along with Sophie, her son, and me.

But we need you!

We have developed a petition to send in advance of this meeting. Please click the link at the bottom of the email to view and sign the online petition. I know for a fact that so many students have dealt with the lack of understanding of school personnel and I know how devastating this has been for anyone who has faced it. Kids are teased, bullied and punished for symptoms of a neurodevelopmental disorder that they cannot control. Our goal is to obtain a mandate from NYSED for all schools in NY State who have a student enrolled with TS to provide in-service training on this very complex disorder. We are also requesting peer education, if so desired by the parents, to help kids with TS avoid the teasing and bullying that so many of them experience.

You can view the petition, and add your signature, at the link below. Please feel free to ask other people you know to sign it. Any resident in the state of New York age 13 or over may sign. Don’t hesitate to ask neighbors, family members, medical providers, teachers, etc., to sign too. We will post updates on the TAA of Greater NY State website at

There’s plenty of space in the online petition form to let NYSED know about your specific experience and point of view around Tourette education. But if you want to write your thoughts in a letter, you can! Just scan and email your letter to us at, and we will forward all the letters received in a batch to the Assistant Commissioner, along with the petition.

Please do this now to help all kids from across NY State who are afflicted with Tourette Syndrome to be understood and be able to reach their full potential.

Supported by:

Jane Zwilling and Kate Callan, TAA of Long Island
Helene Walisever and Sharon Hammer, TAA of Hudson Valley
Gary Wainwright, TAA of Rochester and the Finger Lakes Region
Lisa Hazen, TAA of NY City

Click here to sign the online petition.

We need to receive all signatures and letters by Saturday, October 21 Sunday, October 29.

Thank you!
Susan Conners, President
TAA of Greater NY State

Youth Ambassador Training Program – Tourette Association of America

We are happy to announce the 2016 Tourette Association Youth Ambassador Training will be held Tuesday, March 8 through Thursday, March 10 at the Crystal Gateway Marriott in Arlington, VA. The Youth Ambassador Training is a comprehensive training aimed at creating exceptional teen leaders and Tourette advocates. Youth Ambassadors will receive guidance on public speaking, on how to give a concise presentation on TS and presentation logistics. The Training also includes participation in the Tourette Association’s annual National Advocacy Day. The Tourette Association seeks at least one teen and parent/guardian team from each Tourette Association chapter to attend. Please click on the attachment below for more information & the application. Applications are due Friday, November 6, 2015. All applications should be emailed to the Greater NY State chapter at this email address or mailed to the address below.  Click here for application.




TAA of Greater NY State

20 Thomas Jefferson Lane

Snyder, NY  14226


Thank you

Sue Conners, President

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What If Everything You Knew About Disciplining Kids Was Wrong?

LEIGH ROBINSON WAS out for a lunchtime walk one brisk day during the spring of 2013 when a call came from the principal at her school. Will, a third-grader with a history of acting up in class, was flipping out on the playground. He’d taken off his belt and was flailing it around and grunting. The recess staff was worried he might hurt someone. Robinson, who was Will’s educational aide, raced back to the schoolyard.


UPDATE: Full Day Educator’s Conference on Jan. 24th

For those of you who missed the full-day educator’s conference in October, we are repeating the same program on Saturday, January 24. The conference is being sponsored by the Museum of Disability History in association with Learning Partners and will be held at the Museum at 3826 Main Street in Amherst, NY. This conference is for parents and all educational personnel and will again feature Susan Conners, author and president and education specialist for the Tourette Syndrome Association of Greater NY State. There will also be a panel of local youth with TS who will speak about their own struggles in school.

We also urge you to copy the attached registration form and share it with your child’s school. CEU’s are being offered as well as certificates of attendance for attendees. This is an excellent opportunity for you to educate yourself and your child’s teachers about the education of children with Tourette Syndrome and the associated disorders of ADHD, OCD, Sensory Processing Disorder, Dysgraphia, Anxiety and Learning Disabilities. Space is limited so be sure to use the attached form to register right away.

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The majority of students with TS for whom I have advocated have dysgraphia. The difficulty that dysgraphia causes for individuals with TS is in getting thoughts from the brain to the paper for a wide variety of reasons. This is a well-documented area of disability for students with TS and ADHD and results in handwriting that is messy, sloppy and difficult to read.  Oftentimes margins and spacing are uneven.  The child may write very little or refuse to write altogether.  The reasons are complex but can include hand cramping, or finger, wrist, arm, neck, shoulder, head and eye tics.  It can also (but is not always the case) be due to coordination or fine motor skills.  Sometimes it is an unexplained disconnect of some sort between ideas and the ability to express them in writing.

Handwriting can be slow and laborious and, as a result, an area of struggle for the child. Some students are obsessed with writing perfectly and it takes them an inordinate amount of time to accomplish the task.

Frequent erasing and a resistance to write are both signs that the child is experiencing symptoms of dysgraphia. Unfortunately, parents and teachers frequently assume that the child is refusing to write because they don’t like to do it.  In reality, the reverse is very likely true. The child does not like to do it because he is experiencing the symptoms described above which often leads to failure and therefore he refuse to write.

Occupation therapy support for young students sometimes can be helpful. However, for the most part, practice and specialized pens/pencils will not have a positive outcome. Extra practice or rewriting typically will not result in better penmanship.  Frequently the best use of time and energy is to teach the child keyboarding skills at as early an age as possible.

It is important to note that for some students, handwriting is sometimes fine and other times messy. Remember that all symptoms are inconsistent, they wax and wane and are affected by stress and other environmental factors. Some students are able to write neatly for a short time but with longer assignments the dysgraphia becomes more of an issue.

Educating the school on the prevalence of this symptom for students with TS is extremely important. As a proactive measure, advocating that keyboarding skills be taught as early as possible is wise. In most cases, printing is easier to accomplish than cursive and therefore printing also needs to be acceptable.

Advocating for a scribe (someone who writes what the student says) can be helpful if keyboard skills are weak. This allows the student to demonstrate the extent of his/her knowledge on a subject without dysgraphia preventing it.  Having someone scribe as the student talks also teaches dictating skills, which have assisted students and adults, use a voice-activated computer program. Good keyboarding skills would always be a priority as there are times when speaking into a computer is not practical and keyboarding is a skill that is invaluable.

When advocating for writing support, bring samples of the student’s handwriting to the meeting. If you have a sample of a handwritten essay and another essay that was done on the computer (assuming that the computer generated one is superior), this can be helpful in validating that the child’s performance is hindered due to the symptoms of dysgraphia.

Common modifications that may be important to consider are:

Use of computer for taking notes, essays and long answers

Allow printing

Do not grade on appearance

Provide notes (Sometimes, teachers will handout copies of notes with blanks prior to the lesson so that the student can write in appropriate words for the blanks. If this works, it may assist the student in paying attention and of benefiting from writing key words.)

Reduce homework assignments that require writing

Provide alternative methods of assessing acquired knowledge such as oral reports, oral tests and quizzes

Extend time for tests, quizzes, projects, etc.

Allow for testing in separate locations with scribing support available, if necessary

You may also want to suggest that a trial period of specific supports be attempted to determine if support will improve grades, attitude, behaviors, etc. The frustration and embarrassment of sloppy, immature handwriting frequently leads to more than academic difficulties. Support in this area is frequently critical to the overall success

of the child.

By Kathleen Giordano, Education Specialist, TSA, Inc.