Other Related Organizations & Programs
Tourette Association of America
Long Island Tourette Association
Tourette Association Hudson Valley Chapter
NJ Center for Tourette Syndrome and Associated Disorders
Job Accommodation Network: a Resource for Questions about Workplace Accommodations
Child Mind Institute
An independent, national nonprofit dedicated to transforming the lives of children struggling with mental health and learning disorders.
Child Mind Institute is currently offering no-cost psychological evaluations in Harlem and Staten Island. Click here for more information.
Resources for families of children and adolescents with learning and attention issues
NYU Child Study Center
NYU Langone Tourette
Tics, Tourette Disorder & Trichotillomania Program | NYU Langone Health
PANDAS Network (Pediatric Autoimmune Neuropsychiatric Disorders)
Weill Cornell Tics and Tourette's Pediatrics Program
Mt Sinai Tics and Tourette's Clinical and Research Program
NY Connects provides free, unbiased information about long term services and supports in New York State for people of all ages or with any type of disability
Office for People with Developmental Disabilities (New York State)
Camp Free to Be Me hosted by Camp Kinder Ring
Summer camp for children with Tourette
Tics and Tourette Disorder: What Families Should Know to Get the Help They Need
The OCD, ADHD and Tic Disorder Triad
Tourette Syndrome in the Classroom: Collaboration and Accommodations for a Successful School Year
Planning the First Visit with the Doctor
Dr. Miri Rosen
Dr. Elkhonon Goldberg
Tourette's, ADHD, and Cerebral Hemispheres: Presentation by Dr. Goldberg
Manhattan Behavioral Medicine
Dr. Joohi Jimenez-Shahed
NJCTS Announces 2021 Program of Webinars
NJ Center for Tourette Syndrome and Associated Disorders has announced the topics of their Wednesday Webinars series for 2021 featuring presentations by medical and mental health professionals, education specialists, and other leaders in their field.*
01/13/21 – Using Positive Psychology to Find More Happiness Everyday
02/03/21 – Outgrowing the Child Neurologist: Transition in Tourette Syndrome
03/03/21 – Anxiety & Worry
04/21/21 – Importance of Play
05/26/21 – Nature & Mental Health
08/18/21 – Trauma Informed Classroom
09/22/21 – Medical Marijuana
10/06/21 – Mental Health in Media/Stigma & Stereotypes
NJCTS’ free Wednesday Webinar series was launched in 2008 and draws an audience from across the United States. The series features online seminars for parents, educators and professionals on topics of interest to the Tourette Syndrome and associated disorders community, such as anxiety, OCD, sensory issues, bullying, school accommodations, and much more.
To sign up for a webinar, or browse an archive of past webinars, visit njcts.org/webinars. A professional development certificate or a certificate of attendance for attending any of these live webinars is available for educators at a nominal fee.
*Topics are subject to change. Keep an eye on our website for the latest info.
Sleep-Wake Rhythms Survey in Children with Tourette Disorder
Researchers in the UCLA Department of Psychiatry are seeking children ages 10 to 17 with Tourette Disorder or other chronic tic disorders, and their parents to participate in an internet survey assessing sleep-wake rhythms.
The survey includes questions on demographics, medical/psychiatric history, tic severity and course, sleep-wake rhythms, general sleep habits, and emotional and behavioral functioning. Parent and child questions are presented in the same survey. Upon completion of the survey, participants will be able to enter a drawing to receive 1 of 20 $50 Visa gift cards.
Tips for the 2020-2021 School Year
This school year is vastly different as we experience different learning models with COVID-19. Whether classes are held all in-person, a hybrid model, or all remote, the Tourette Association of America is here to provide you with resources and tips for every type of classroom setting.
To help guide you this school year the TAA’s Education Advisory Board co-chairs have offered advice on best practices that will help reduce anxiety and give some predictability and routine to the school year.
Visit https://tourette.org/learning-in-the-2020-2021-school-year/ to get many practical tips and resources.
Child Study Center Webinars
The Child Study Center, part of Hassenfeld Children’s Hospital at NYU Langone, hosts frequent webinars to offer insights, practical tips, and advice to parents and caregivers. Webinars cover topics such as effective parenting, managing stress, and improving emotional health. The webinars are hosted by expert clinicians.
Previous sessions are available from the Child Study Center webinar archive.
For information on upcoming workshops, please visit this page.
Is your child struggling to get and stay organized for schoolwork during in-person, virtual, or hybrid learning?
Many students struggle to stay organized, manage their time, and plan activities. These organizational problems can cause schoolwork difficulties and create headaches at home. Switching to virtual schooling can make organizational challenges even harder for some.
If your child is in the 3rd, 4th, or 5th grade and has one main teacher, your child may qualify for a study that includes clinical treatment conducted over video and brain imaging.
No-cost brief assessment
Two brain magnetic resonance imaging (MRI) scans
No-cost 12-week individualized treatment to improve organizational skills based on an empirically validated program adapted to meet demands of both in-person and virtual schooling
To see if your child might benefit from Organizational Skills Training, please complete a short quiz.
For more information about this recruiting study, contact us at 212-404-3770 or firstname.lastname@example.org.
Resources & Events During the Pandemic
Please find a list of resources below gathered by the NY State Tourette Consortium to help children and adults during the pandemic. Stay safe and healthy!
SUGGESTIONS FOR SELF-CARE DURING THE COVID-19 PANDEMIC
Washing your hands, wearing a mask when you are in public areas, and practicing social distancing are great practical ways to take care of your physical health during this time.
Remember, it is also important to take care of your mental health!
Be kind to yourself, and to those around you.
Permit yourself and others to be human and imperfect.
Limit your social media and COVID-19 coverage intake.
Allow yourself a fixed amount of time (< one hour) to worry then move on.
Allow your children a fixed amount of time (< two hours) to play video games then try a new activity.
Stick to (or create) healthy lifestyle habits: Daily exercise, nutritious meals, consistent bedtime and wake-up hours.
Create and stick to a daily routine for yourself and your family.
Reach out to and nurture your support networks.
Focus on controlling the things that you can and letting go of those things that you cannot control. Know the difference!
Develop a toolkit for self-care: fun activities, relaxing activities, stress-relieving activities etc.
Find time to laugh about something at least once a day.
TELEHEALTH SERVICES FOR YOUTH AND ADULTS WITH TIC DISORDERS
The Long Island Center for Tourette and Northwell Health
Telehealth services including new consultations and ongoing care are being provided as appropriate through the Long Island Center for Tourette and throughout the Northwell Health System.
For further information call: Ms. Florentina Lazaroaie, Patient Navigator
Phone: (516) 365-0587 Fax: (516) 365-1909
Mount Sinai Hospital
Therapy and Medication Management
Clinical Research Trials
Phone (212) 241-2135
Call 646-962-2820 for information about telehealth services
University of Rochester Medical Center
Telehealth services are being provided where appropriate throughout the URMC system. Please contact the relevant office below for information and appointments:
Department of Neurology - Pediatric Neurology (for children < 18 years old).
Phone: (585) 275-2808 (585) 275-3683
Department of Neurology - Movement Disorders (adults)
Phone: (585) 341-7500 (585) 341-7510
URMC Pediatric Behavioral Health & Wellness: Child & Adolescent Outpatient Services
Phone: (585) 279-7800
URMC Mental Health & Wellness: Adult Outpatient Services
Call: (585) 273-5050
WEBINARS/ONLINE SUPPORT & RESOURCES:
Northwell Health: “Parenting During Covid-19”
Northwell Health offers practical parenting advice in this approx. 20 minute talk on YouTube, presented by Child Psychiatrist Dr. Vera Feuer, MD
See also the Northwell newsletter article, “Parenting in the Age of COVID-19”
Weill-Cornell Medicine: Pediatric OCD, Anxiety, and Tic Disorders Program (POCAT)
“Parenting Strategies for Challenging Times Webinar Series”
Navigate to this site to access free, previously recorded webinars and learn about upcoming webinars:
New York Presbyterian Youth Anxiety Center
“Building Resilience in Challenging Times”
Free webinar series for young adults, ages 16-28, and parents of young adults.
Every Tue & Thursday, 4/30 – 5/28, 8:00 p.m. – 8:45 p.m. EDT
Navigate to this site to access free, previously recorded webinars and learn about upcoming webinars: www.nyp.org/youthanxiety/important-notice
Golisano Children’s Hospital: General Resources for Families – Parents and Children
Golisano Children’s Hospital at Strong (Rochester, NY) offers the following landing-page with links to various resources for families:
International OCD Foundation (IOCDF)
Some individuals with Tic Disorders may have co-occurring obsessive-compulsive symptoms. The IOCDF has established a variety of resources including weekly town halls and online support resources, and tips for how to “Listen to the CDC, not the OCD”
1) ONLINE LEARNING
Wide Open School - “Schools are closed. Minds are wide open”
A free collection of online learning experiences for students of all ages, grades, and needs.
The Child & Family Institute
Our team of academic tutors, coaches, and educational consultants offer customized virtual learning sessions, home schooling and homework help, and executive functioning assistance.
For enquiries, send email to: email@example.com
Various Learning Resources:
10 Best You Tube Educational Channels for Kids:
Free audio books for kids:
Scholastic Learn at Home:
Helping You and Your Family Deal with Covid-19:
At Home with Special Needs Children:
150 Ideas for Sensory Home Learning
Some worksheet activities on Google Drive & DropBox:
Google Drive: https://drive.google.com/file/d/1MaM2RBrqyDeyKFCG8impDgfuZ8a2tIZ-/view?fbclid=IwAR19HtNK8XYG1IVI6HFp_ujAc3zDgescCrHp9UYUGPWccszSynWCLsLFMDA
Drop Box: https://www.dropbox.com/s/o8p218ps2yxugo7/Blank%20316.pdf?dl=0&fbclid=IwAR2xJxlquXD8rIjHPVpQaljQTdOCJzPnIEvAeFZ8_BbANx3FIzZlfyHkqP0
How I’m feeling
All About Me
Living Through History
Coronavirus Time Capsule
Tips from Dr. Helene Walisever, PhD (Co-Chair of the NY Hudson Valley Chapter of the Tourette Association of America, and TAA Education Advisory Board Member)
Dr. Walisever provides the following tips:
· Families can contact their child’s school in writing to request Special Education Services that their child may not be currently receiving virtually. If the school is unable to meet the child’s needs, parents may consider writing a “10-day notice letter” of their intent to obtain private education services for their child, if school is unable to meet the child’s needs. Information about this type of letter, and the process for preparing one are available at various sites, including:
· If there are any work samples that parents think will document either regression or lack of progress they should save those and set those aside as well. This documentation may help in future, if requesting compensatory or additional services from the district to make up for the lost instruction time, IEP services, etc. Parents can also log the time spent in tutoring their child, particularly for special education services that are typically provided to the child by the school district.
Council of Parent Attorneys and Advocates, Inc. (COPAA)
COPAA has many resources for parents of students with special education needs during this time, including guidance to families on how to proceed when the school district does not continue special education services at this time.
· COVID-19 Landing Site: https://www.copaa.org/page/covid-19
· COPAA Statement on Student Rights Under IDEA During the COVID-19 Outbreak: https://www.copaa.org/news/493349/COPAA-Statement-on-Student-Rights-Under-IDEA-During-the-COVID-19-Outbreak.htm
Parent Training and Information Centers
PTICs serve residents through the country, to support children and youth with disabilities, families, professionals, and other organizations that support them. Educational advocacy is a large part of the PTIC mission. To find the PTIC for your area in NY State, navigate to this website and scroll down to find the listings for NY State:
From the Wrightslaw website, “Our goal is to provide individuals with the knowledge and skills to advocate effectively for children with disabilities”
3) STATE AND FEDERAL EDUCATION DEPARTMENTS
New York State Education Department:
Guidance for P-12 Schools, including many memos and resources, including for students with special needs
Guidance on Continuity of Learning
NY State Board of Regents is providing live-stream video for its monthly meetings and has archived the past meetings.
State Education Department Guidance on Graduation and Course Requirement Changes due to COVID-19 and Ongoing Statewide School Closure (April 7, 2020)
US Department of Education: Questions and Answers on Providing Services to Children with Disabilities During the Coronavirus Disease 2019 Outbreak March 2020: https://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/qa-covid-19-03-12-2020.pdf
The Elephant in Every Room I Enter. Created by Gardiner Comfort and Kel Haney. A solo piece about Gardiner Comfort’s experience as an actor living with Tourette Syndrome.
Mr. Comfort will be returning to the Osler Society at the Zucker School of Medicine at Hofstra / Northwell to present a free, one-hour presentation on Zoom.
May 26th, 2020
5:00 – 6:00 p.m.
And learn more here: https://www.nytw.org/show/elephant-in-every-room-i-enter/
Virtual National Parks
Story Time from Space
Astronauts read stories, from space!
Ronald E. Stiskin & Associates, P.C.
Specializing in Special Education & Disabilities Law
Ronald E. Stiskin is passionate about assisting families and individuals in transition. Whether securing educational services for children with special needs; planning for the future of disabled adults; or helping seniors and their families identify their next steps, Ronald is committed to guiding his clients to their best outcome.
Ronald has attended several TS events and has educated himself with what many familes and children experience when faced with Tourette Syndrome.
We have formed an alliance with Ronald and his firm. You can visit their website at Ronald E. Stiskin & Assoc.
Contact by phone 212-939-7570 or email at Ron@stiskin.com