Resources
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
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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.
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Remember, it is also important to take care of your mental health!
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Be kind to yourself, and to those around you.
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Permit yourself and others to be human and imperfect.
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Limit your social media and COVID-19 coverage intake.
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Allow yourself a fixed amount of time (< one hour) to worry then move on.
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Allow your children a fixed amount of time (< two hours) to play video games then try a new activity.
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Stick to (or create) healthy lifestyle habits: Daily exercise, nutritious meals, consistent bedtime and wake-up hours.
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Create and stick to a daily routine for yourself and your family.
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Reach out to and nurture your support networks.
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Focus on controlling the things that you can and letting go of those things that you cannot control. Know the difference!
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Develop a toolkit for self-care: fun activities, relaxing activities, stress-relieving activities etc.
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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
Email: info@litourettecenter.org
https://www.litourettecenter.org
Mount Sinai Hospital
Therapy and Medication Management
Clinical Research Trials
Phone (212) 241-2135
https://www.mountsinai.org/care/behavioral-health/services/ocd-tics/tourette-coe
Weill-Cornell Medicine
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
https://www.urmc.rochester.edu/neurology/our-divisions/child-neurology.aspx
Department of Neurology - Movement Disorders (adults)
Phone: (585) 341-7500 (585) 341-7510
https://www.urmc.rochester.edu/neurology/our-divisions/movement-disorders-unit.aspx
URMC Pediatric Behavioral Health & Wellness: Child & Adolescent Outpatient Services
Phone: (585) 279-7800
https://www.urmc.rochester.edu/childrens-hospital/behavioral-health-wellness/outpatient.aspx
URMC Mental Health & Wellness: Adult Outpatient Services
Call: (585) 273-5050
https://www.urmc.rochester.edu/mental-health-wellness/adult-services/outpatient/general-outpatient-services.aspx
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
Links: https://www.youtube.com/watch?v=pTGM0mRfMSk&feature=youtu.be
https://youtu.be/pTGM0mRfMSk
See also the Northwell newsletter article, “Parenting in the Age of COVID-19”
https://thewell.northwell.edu/well-informed/coronavirus-quarantine-kids
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:
https://psychiatry.weill.cornell.edu/pocat
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
Webinar Schedule for Parents:
4/30: Helping your young adult child cope with distress
5/7: Helping your young adult build independence during a pandemic
5/14: Parent coping and conflict management
5/21: Helping your young adult navigate abrupt transitions
5/28: Accepting reality and making meaning during this time
Webinar Schedule for Young Adults:
5/5: Understanding our Emotions during this challenging time
5/12: Coping and Keeping Busy
5/19: Staying connected to others during social distancing
5/26: Dealing with anxious or unwanted thoughts
5/28: Accepting reality and making meaning during this time
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:
https://www.urmc.rochester.edu/childrens-hospital/coronavirus-information-for-families/resources-for-families.aspx
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”
https://iocdf.org/covid19/
EDUCATIONAL SUPPORT/RESOURCES
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.
https://wideopenschool.org/
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: info@childfamilyinstitute.com
Various Learning Resources:
10 Best You Tube Educational Channels for Kids:
https://www.learningliftoff.com/the-best-educational-youtu…/
Free audio books for kids:
https://www.learningliftoff.com/free-audio-books-for-kids/
Scholastic Learn at Home:
https://classroommagazines.scholastic.com/support/learnathome.html
Helping You and Your Family Deal with Covid-19:
https://geraldguild.com/blog/#/article/3630
At Home with Special Needs Children:
https://parentnetworkwny.org/the-other-coronavirus-front-line-at-home-with-special-needs-children/
150 Ideas for Sensory Home Learning
https://inclusiveteach.com/2020/03/20/150-sensory-learning-ideas/
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
2) ADVOCACY
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:
a) https://www.parentcenterhub.org/private/
b) https://www.understood.org/en/school-learning/choosing-starting-school/finding-right-school/unilateral-placement-moving-from-public-to-private-school
· 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:
https://www.parentcenterhub.org/find-your-center/
Wrightslaw
From the Wrightslaw website, “Our goal is to provide individuals with the knowledge and skills to advocate effectively for children with disabilities”
https://www.wrightslaw.com/
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
http://www.nysed.gov/coronavirus/guidance-p-12-schools
Guidance on Continuity of Learning
http://www.nysed.gov/edtech/guidance-continuity-learning
NY State Board of Regents is providing live-stream video for its monthly meetings and has archived the past meetings.
https://www.regents.nysed.gov/meetings
State Education Department Guidance on Graduation and Course Requirement Changes due to COVID-19 and Ongoing Statewide School Closure (April 7, 2020)
http://www.nysed.gov/news/2020/state-education-department-issues-guidance-graduation-and-course-requirement-changes-due
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
FUN STUFF
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.
Register: https://hofstra.zoom.us/meeting/register/tJYrcuquqDkpHdGoXfWRLxGMv9BUi91wd9xP
And learn more here: https://www.nytw.org/show/elephant-in-every-room-i-enter/
Virtual National Parks
https://artsandculture.withgoogle.com/en-us/
Story Time from Space
Astronauts read stories, from space!
Other Related Organizations & Programs
Tourette Association of America
Long Island Tourette Association
Tourette Association Hudson Valley Chapter
https://taa-nyhv.org/index.html
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.
Understood
Resources for families of children and adolescents with learning and attention issues
NYU Child Study Center
https://nyulangone.org/locations/child-study-center
NYU Langone Tourette
https://nyulangone.org/conditions/tourette-disorder
Tics, Tourette Disorder & Trichotillomania Program | NYU Langone Health
https://nyulangone.org/locations/child-study-center/tics-tourette-disorder-trichotillomania-program
PANDAS Network (Pediatric Autoimmune Neuropsychiatric Disorders)
Weill Cornell Tics and Tourette's Pediatrics Program
https://pediatrics.weill.cornell.edu/pediatric-clinical-services/tics-tourettes-program
Mt Sinai Tics and Tourette's Clinical and Research Program
NY Connects
https://www.nyconnects.ny.gov/
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
Email: freetobeme@campkr.com
Summer camp for children with Tourette
Tic Helper
Related Videos
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
https://www.youtube.com/watch?v=bfVWXgNw6yw
Doctors
Dr. Miri Rosen
Dr. Elkhonon Goldberg
Tourette's, ADHD, and Cerebral Hemispheres: Presentation by Dr. Goldberg
Manhattan Behavioral Medicine
http://manhattanbehavioralmedicine.com/
Dr. Joohi Jimenez-Shahed
https://health.usnews.com/doctors/joohi-jimenez-shahed-62337
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
