Camp Ticapalooza 2018

GET READY FOR S’MORES, THE CAMP FIRE, THE TALENT SHOW, ZIPLINING, CANOEING, KAYAKING AND ALL OF THE WONDERFUL THINGS THAT WE LOVE ABOUT CAMP TICAPALOOZA!!
Friday, September 21 – Sunday, September 23
Camp Cory, Penn Yan, NY
Open to kids ages 6-17
We are very excited to see our returning campers and
TO WELCOME LOTS OF NEW ONES !!

It’s that time again! We are officially announcing the Tourette Association of Greater NY State annual overnight camping program “Ticapalooza” to be held this year September 21 – 23, 2018, at Camp Cory in Penn Yan, NY. We welcome ages 6-17, and optionally, their parent(s) and sibling(s), to join us for this fun-filled weekend. Registration can be done via email or snail mail, and you can make payment either by mailing a check to the chapter, or on the website through Pay Pal. Registration ends September 12. We need your registration info and payment by that date so that we can feed, house, and program for the correct number of campers!

We have some partial and full scholarships available.  The application form is included in the registration packet.

If wanting to pay by Paypal, use the donation button and type in your total payment amount.  If you are applying for a scholarship, please send in your registration and scholarship application but wait for payment instructions.

 

Camp Ticapalooza 2018 Registration Forms

Back to School with Tourette Syndrome

Back to School with Tourette Syndrome

School is starting all across New York State. Going back to school can be a very exciting time. We meet new teachers, see old friends, make new friends, prepare for a new year of learning. However, for kids dealing with TS, this can be more of a stressful experience than an exciting one. New teachers won’t understand my tics, new kids may make fun of me, I could get punished for things I cannot control. I remember those years all too well because I lived them. My experience was complicated by the fact that I did not have a diagnosis until 15 years after I had finished my formal schooling.

Education about Tourette Syndrome is clearly the key. Many teachers and classmates have never learned anything about TS. It’s not their fault — but it will be our fault if we do not seize the moment and provide them with the knowledge they need to be supportive.

Education is the Key

TAA of Greater NY State has the tools to help you. We offer teacher in-service programs, videos and brochures and can provide a youth ambassador who can do a peer in-service presentation. Let us know what your needs are. We can be reached by email at conners@roadrunner.com or by phone at 716-839-4430. I am a retired teacher of 33 years so I know all too well how busy those first few days can be. But parents, please remember that being in a new classroom setting with new teachers and new classmates who do not understand TS can be rough.

An in-service may not be able to be scheduled for a couple of weeks, so I am posting below a one-page fact sheet and an article about associated disorders in the classroom, that you can give to all of your child’s teachers that very first day, or in advance, if possible. They are not a substitute for an in-service, but can provide them with some very important information about TS that will help smooth out those first few days. I am also posting a sample “synopsis” of your child, his or her strengths, areas of difficulty and the accommodations that he or she has on a 504 Plan or an IEP, so that teachers will know from day 1 what they are responsible for. I urge you to create such a synopsis for your child, using the sample format, to give to all teachers working with your child, along with the other two articles. In addition, I am also posting a link to a 60-minute training video.

One-page Fact Sheet

Associated Disorders article

Synopsis of IEP for (name)

A Teacher Looks at Tourette Syndrome” video

PLEASE CONTACT US. WE’RE HERE TO HELP!

Sue Conners, President
TAA of Greater NY State

Turn Niagara Falls Teal for Tourette Awareness A HUGE SUCCESS!

At 7:30 on June 15, 147 members of our Tourette family gathered together in a Niagara Falls NY State Park to celebrate and culminate Tourette Syndrome Awareness Month.  Families came from all parts of NY State including Western NY, Syracuse, Albany, Westchester County and as far away as Wisconsin to enjoy a wonderful picnic, a raffle and games, all finishing at the brink of the Horseshoe Falls to witness an awe-inspiring event: turning Niagara Falls teal, to make the world aware of a disorder called Tourette Syndrome.  Right across the Falls was a group of families from the Hamilton-Halton, Ontario, Chapter of the Tourette Foundation of Canada waving back at us from across the river.  The teal lights were kept on for 15 minutes, accompanied by a round of fireworks and cheers and shouts from all of us in attendance.

I have headed the Greater NY State Chapter for its 34-year existence, and this is without a doubt the biggest thrill I have experienced.  We had live media coverage from two major TV stations and an interview with myself and a mother and daughter with TS, all of which aired June 15 and again June 16.

I had experienced two very difficult IEP meetings Wednesday and Friday of that week, one that involved a 10-day suspension of a 7-year old for symptoms of his neurological disorder.  To see these kids come together in this small part of their world where they can be accepted and understood and spend time with kids like themselves, was overwhelming.  Over and over again I heard how great it was for them to be with their “Tourette Family” and to be a part of bringing attention to this disorder internationally.  Due to an auto-immune disorder, I use a mobility scooter, and at least 15 of these kids came to me to offer to help me get my scooter down the hill to the bottom of the Falls for a better view and better pictures.  These are the kind hearts of kids, many of whom are teased, bullied and punished on a daily basis because of their symptoms.  They show us the best of humanity.

A heartfelt thank-you goes out to so many people for helping make this such an amazing evening:

  • Our food donators  – Zweigels of Rochester and JMills Distributors of Buffalo
  • Our sign makers:  Christine McCormick and her son, Connor
  • Gary Wainwright, Chair of the Greater Rochester Chapter who attended the event and rallied his troops who made the drive in large numbers
  • Board Members:  Lisa and Michelle Phillips for making several runs for food items in advance of the picnic and set up the food tables
  • Our set-up committee: Michelle Phillips, Lisa Phillips, Olivia Sambuchi and Ben, Kaitlyn and Joey Miteff, Jessamine Daley-Griffen and her whole family, Chris and Connor McCormick, Rose Snelson and Colin Davis
  • Our hot dog grillers:  Peter Wegman, Jeremy Daley-Griffen, Chris McCormick.  Peter also was able to get all of the hotdogs for the picnic donated.
  • National Board Member, Fred Cook, who attended the event representing TAA of America.  Fred is a long time Buffalo resident and member of TAA of Greater NY State
  • Our great friends from the Hamilton-Halton Chapter of Ontario for convincing the Niagara Falls Illuminations Board (located in Ontario) to turn the Falls teal and waving to us across the border.
  • To all of our wonderful families who attended, supported us and most importantly gave me hundreds of hugs, put a huge smile on my face and made me realize how lucky I am for my whole “TS Family”.  You enrich my life more than you will ever know.  We hope to make this an annual event, which will grow in size each year until the world knows and understands what Tourette Syndrome is.

THANK YOU!

Sponsored by:

The Tourette Association of Greater NY State and Tourette Canada

First EVER INTERNATIONAL EVENT

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 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 Sunday, October 29.

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

Chapter Member Presents Forum about Tourette Syndrome at the NY District Kiwanis Club Convention

On Saturday, August 26, 2017, in beautiful Lake Placid, NY, our chapter member Christina McCormick, who happens to be the President of the Amherst Kiwanis Club, presented a half-hour forum on “Children with Tourette Syndrome,” as part of the annual Kiwanis Convention for the New York District.

Chris tells us:

“The New York District Kiwanis Governor Elect’s upcoming Governor’s project will focus on children who have disabilities. One of the spotlights will be on TS and all its associated disorders. There are two main goals for this spotlight:

  1. bring awareness about Tourette Syndrome to the public
  2. have individual Kiwanis Clubs focus on a service project for children with TS

“This is an exciting initiative from our Governor-Elect and it will be her focus in her 2017-2018 Governor’s year. Local Kiwanis clubs around the state can participate, and our goal is to get information out there to raise awareness of TS, and hold events for kids with TS.”

Chris and her husband, Shawn, have been very involved in the Tourette Association of Greater NY State for many years. Shawn currently serves on the chapter board. We are very grateful to Chris for initiating this presentation and the exciting opportunity that the chapter has to spread awareness of TS. We are very proud of Chris for all of her hard work on this. Chris and Shawn have a son with TS.

Congratulations on your presentation, and thank you, Chris!