Action Needed

To see the number of signatories and 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 tsa-gnys.org.

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 tourette.gnys@gmail.com, 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.

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