LI TAA hopes everyone is staying safe and healthy.
During this difficult time we thought we would share these helpful resources put together by the NY Consortium for Tourette:
1. MENTAL HEALTH CRISIS RESOURCES
Disaster Distress Hotline (800-985-5990)
National Suicide Prevention Lifeline (800-273-TALK)
The National Suicide Prevention Lifeline provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week. Call 1-800-273-8255 or visit their website to chat with a crisis counselor.
Crisis Text Line is free, 24/7 support for those in any type of crisis. Text 741-741 from anywhere in the US to text with a trained Crisis Counselor.
2. 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.
3. TELEHEALTH SERVICES for youth and adults with Tic Disorders
1) 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
2) Mount Sinai Hospital
Therapy and Medication Management
Clinical Research Trials
Phone (212) 241-2135
3) Weill-Cornell Medicine
Call 646-962-2820 for information about telehealth services
4) 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
4. 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.npy.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
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”
Centers for Disease and Prevention (CDC):
Office of Mental Health:
Talking to Children about Coronavirus (COVID-19):
NAMI: COVID-19 (Coronavirus) Information and Resources:
Northwell: Talking to Kids About Coronavirus:
Child Mind Institute:
The Clay Center for Young Healthy Minds:
National Center for PTSD:
5. 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.
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: firstname.lastname@example.org
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/…/1MaM2RBrqyDeyKFCG8impDgfuZ8…/view
How I’m feeling
All About Me
Living Through History
Coronavirus Time Capsule
Tip 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
4) 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.
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!
Virtual Field Trips
Here is a an article that lists 20 virtual field trips you can take around the globe!
“I Spy” Mystery Tour
On a nice day when the kids really need to get out of the house: Pile the kids in the car for an “I Spy” mystery tour. As you drive, each time you come to a stop sign or a traffic light, have the kids take turns deciding which way you go – left, right or straight ahead. Once the decision is made, I Spy begins. You name an object that they are all searching for. The list is endless; a red house, a cow, a horse, pink flowers, a tree swing, etc., etc., etc. The person who finds the object you are looking for, receives a point. The person with the most points at the end of the tour receives a prize. It doesn’t have to be monetary – pick what to eat for dinner, pick the family movie to watch that evening, pick a family game to play, bedtime a half hour later than usual, etc. Use your imagination.
Museum of Modern Art (MoMA)
Offering five free, online art classes:
Sign up through www.coursera.org
Metropolitan Opera Free Streams of Live Performance Archives
6. FREE/LOW FEE ONLINE COURSES
[Added: April 8 – Expires: May 31] 85 Free Certificate Online Courses: Includes certificate courses from universities such as Duke, Caltech, and Georgia Tech. These normally cost about $50 each. Requires simple sign-up : https://www.coursera.org/
[Added: April 8] 50+ Free Certificate Courses: Includes courses from institutions such as King’s College, University of Edinburgh, and Monash University. These certificates normally cost $30 to $85 each. Requires simple sign-up.
[Added: April 19 – Expires: June 30] 16 Free Certificate Courses: Includes a wide variety of certificate courses from Australian universities. These certificates normally cost $30 to $85 each. Requires simple sign-up.
[Added: April 18 – Expires: April 30] 55 Free Online Courses: Includes courses about wildlife, farming practices, and business. Requires simple sign-up.
[Added: April 8 – Expires: April 30] 7,000+ Free Tech Online Courses: Includes courses in programming, machine learning, and cyber security. A subscription normally costs $29 per month. Requires simple sign-up.
[Added: April 8] 2-Month Free Trial: Includes 2,000+ online courses in tech, business, and art. A subscription normally costs $15 per month. Requires signing up with credit card or PayPal, so don’t forget to cancel in time.
[Added: April 8] 700+ Free Online Courses: Includes courses in tech, leadership, and language. Requires simple sign-up.