“Throughout my years I’ve gained a unique perspective on life. It’s easy to be grateful for the good things in our lives, but what about when life throws you a curveball? Don’t get me wrong I’m not like ‘whoo-hoo, I have TS’, but I’ve adapted to my TS and I’m thankful for all of the lessons it has taught me:

Thank you TS for teaching me resiliency and perseverance; how to get back up after being knocked down and to keep fighting for what I want out of life no matter what the challenges may be.

Thank you TS for teaching me open mindedness and compassion; to step back and observe a person or situation before making an assumption and reacting because you don’t always know the whole story or what someone else is going through.

Thank you TS for teaching me tolerance and acceptance for myself and others who are different.

Thank you TS for teaching me how to laugh at myself because let’s face it, sometimes TS causes me to do some silly things.

Thank you TS for teaching me patience; there were some really bad days and good days before I got here.

Thank you TS for teaching me how to hold onto hope and believe that one day everything would be okay.

Thank you TS for teaching me forgiveness; to forgive others who may be react from a lack of understanding.

Thank you TS for teaching me confidence so that I can advocate for myself and others who live with TS.

Thank you TS for teaching me that it’s okay to ask for help, it’s not a sign of weakness.

Thank you TS for giving me the passion to help others and to be a part of the TAA and their continued efforts to make life better for those people affected by TS and Tic disorders.

I am happy with my life and with whom I’ve become and often remind myself of what Tim Howard, professional soccer player and hero of mine once said:

‘I live with Tourette’s. I try to excel with it. But I don’t suffer from it. That’s…the one thing I don’t do.’”

By Jill Mueller, M.S.Ed.

Planning for standardized testing accommodations can be overwhelming and requires advance preparation. The type of documentation required for the ACT and SAT are basically the same and step- by-step instructions can be found on each website. I suggest that parents begin the planning process during the student’s sophomore year, keeping in mind that the review process can take up to several months. Even with proper documentation, a student can be denied and an appeals process will have to be initiated. It’s always best to start early and be prepared. For the ACT, there are two options for testing accommodations. Parents can request one of the options listed below:

• Extended Time National Testing (50% extra time) or
• Special Testing (Testing that will take place at your child’s school with a proctor.
This option is for those students who require testing over several days and may require alternate test formats).

The request for both of these testing options must be accompanied by official documentation stating the diagnosis from a professional who has specific credentials. A psychologist, psychiatrist, neurologist, and neuropsychologist can make the diagnosis. Occasionally, a family physician and special education teacher may submit a report, but only as a supplement. The preferred documentation is a full neuropsychological evaluation with diagnostic codes referencing the DSM-IV or DSM-V (Diagnostic and Statistical Manual).

Submitted evaluations must be up-to-date (no more than a year), however, sending documents that confirm a long standing history of a disability are highly recommended. Regarding accommodations for Tourette and Tic disorders, the inclusion of historical information, time of onset, past and current academic functioning, and accommodations currently given at school, are extremely important when submitting a request. The ACT and SAT specifically request that in the case of Tourette and Tic disorders, the documentation should include the history, frequency, intensity and duration of motor, verbal and visual tics, along with a description of how tics cause a diminished ability directly related to academic functioning- some examples would be poor attention, concentration, slow reading rate and handwriting issues.

If a student is currently receiving extra time or taking exams over several days during the regular school year, chances are the ACT/SAT board will allow for the same accommodations. Sending detailed documentation from the proper professionals is a key factor for getting approval. Testing accommodation forms and instructions can be found on the ACT and SAT websites. The school guidance counselor and/or a designated administrator is responsible for submitting the paperwork with signed request forms. I strongly suggest that parents review the documents and supporting material before it is sent to the SAT/ACT review centers. If parents start the process early, collect all necessary documents and work closely with school counselors, the chances of receiving testing accommodations are greatly increased. Advanced preparation will help alleviate the stress and anxiety during this process.

Jill Mueller is an Independent Educational Consultant and Special Education Advocate with a private practice in White Plains, New York. For more information please visit www.educationoptions.info or call 914-907-1114

Walk or Run with Team Tourette at the
2016 Healing Half Marathon & 10K

Sunday, October 2, 2016
on the Bronx River Parkway, White Plains

Adults, Teens, and Kids Can Walk or Run
6.2 miles-adults and teens age 12 and up
13.1 miles-adults and teens age 14 and up

You don’t have to be a NYHV chapter member to walk/run for Tourette. Invite your friends, neighbors, and co-workers!
If you can’t race, be part of our cheering squad
Or support our team by donating here
Register NOW while spots are still available!
REGISTER HERE
as an Individual and Enter Coupon Code “TT2016” for registration discount
Minimum Fundraising Commitment $100 Suggested Fundraising Goal $250

Join us to hear our guest speaker:
Dr. Kristine Young, President of SUNY Orange
Dr. Young herself is diagnosed with Tourette Syndrome and will be sharing her story as well as information on the college’s Accessibility Office and answering questions about the college experience
Thursday September 29, 2016
7:00PM – 9:00PM

All meetings are held at:
Mental Health Association in Orange County, Inc.
73 James P. Kelly Way
Middletown, NY 10940

RSVP Janet Eckerson JEckerson@mhaorangeny.com

Having been in education for over 18 years, the opportunity I had on March 31st at Harrison HS was one the most rewarding things I had the pleasure to witness. The educational experience for all the 9th graders and staff who attend was something I feel the whole school could benefit from and for that matter all children grades k-12 and staff. The student ambassadors did a fantastic job speaking to the students. When young adults receive information from their peers, it hits home more. I learned so many things in such a short period of time. It made me have a different appreciation on what children go through and have no control of. By educating people, it helps us to be more supportive and makes us look in the mirror. I was so proud of Josh and what he did. I do not know if I could of come out to my classmates to let them know about Tourette. It brought me to tears. As a coach and father of four children, I was so proud of Josh. This was a tremendous assembly and would recommend this to all schools.

Edgar Glascott
Harrison Huskies Boys Lacrosse
Hudson Valley Express Lacrosse

I was so moved by the YA presentation. In addition to learning more about Tourette, I was able to gain an even deeper understanding of how students are affected by this condition. The presentation was so moving, and as a teacher I felt the students were really moved and inspired by the Youth ambassadors. I believe knowledge is power and this presentation left students educated and sympathetic towards all those who live with this condition.

Thanks,

Claire Katz
Harrison High School
Resource Room Teacher

Click on the link below to view her presentation slides:

Dr Bennett presentation Handouts2