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Managing Anxiety and Enhancing Self-Care: Meeting SMS Caregiver and Sibling Needs during the COVID-19 Pandemic

Written by: Rebecca H. Foster PhD, Pediatric Psychologist, St. Louis Children’s Hospital

The COVID-19 pandemic has undoubtedly presented many additional unique challenges for families of individuals with Smith-Magenis Syndrome. With this in mind, we want to take time to share resources focusing on reducing anxiety and meeting self-care needs for families providing care to individuals with SMS.

Helpful Websites:

The following websites provide reputable, vetted information on identifying and addressing mental health concerns associated with COVID-19. Information is also offered on how to talk with children about this topic.

Supports for Caregivers and Adult Siblings

Support for Talking with Children or Persons with Neurodevelopmental Challenges:

Helpful Apps:

There are many apps providing cognitive-behavioral interventions to address anxiety and self-care needs. While an exhaustive list of apps cannot be provided here (because there are thousands of them), the following list includes some of the top rated apps from last year: Best Anxiety Apps for 2019.

Headspace is a meditation app that has been highly recommended. Insight Timer is another great free meditation/mindfulness app.

Please be cautious when deciding whether or not to download an app specific to COVID-19. While reputable apps are being developed, some apps have been released in recent days preying on peoples’ current vulnerabilities.

Activities for Families:

Encourage your family to develop hobbies and interests, including activities that do not involve electronics use. Keep in mind that you can still go outside as long as you stay away from groups of people and playgrounds! There are many websites offering suggestions for enjoyable family activities, including zoos and children’s museums.

How to Access Mental Health Care though Telehealth:

Access to telehealth for mental health needs is rapidly growing during this time of global uncertainty. This will be an evolving resource in the coming weeks. Please contact your local mental health care agencies or health care providers to find out more about whether or not you may be able to participate in mental health services from your home.  

Supports for Crisis Intervention:

Uncertainty and isolation, such as that caused by COVID-19, can lead to thoughts of self-harm. If you or anyone you know experiences thoughts of self-harm, please do the following:

  • Contact the Suicide Prevention Lifeline at 1-800-273-TALK (8255) or the National Helpline at 1-800-662-HELP (4357) for confidential supports and intervention. The My3 app is also a wonderful resource.
  • Take yourself or your loved one to your nearest emergency room for immediate assessment and intervention. Call 911 if additional assistance if needed.