Families of children with special healthcare needs push through a pandemic mountain
These programs offer video connections for parents of and youth with disabilities or special needs
As the world abruptly shut down due to COVID-19, the reality of the biggest pandemic of our lifetime began to sink in. In the beginning, many treated the situation as a vacation— a “Coronacation,” they called it. As days seemed to get longer, boredom and endless Zoom conferences became the order of the day. Most people accepted the “new normal.” School districts implemented distance learning and the majority of families were able to adjust and deal with the inconveniences that arose from things we’d long taken for granted pre-COVID 19.
However, in some households in Connecticut and across the nation, isolation, anxiety, and uncertainty very quickly set in. Families of children and youth with special health-care needs had to figure out how to explain to their child that their school, activities, or programs were shut down. They could not see their grandparents and friends. Parents had to figure out how to teach their child as their special educators would, dealing with difficult behaviors, anxiety, and depression that were triggered by these sudden changes in their schedule. Parents were doing this while balancing the demands of work, either remotely or in person for those deemed “essential workers.”
This was far from the “Coronacation.” Sadly, some suffered silently and alone. But, many families reached out to PATH Parent to Parent/Family Voices of CT (PATH/FVCT) knowing we would understand their struggles. Families were hungry for information. They needed help sifting through the barrage of information or misinformation that was the COVID-19 Pandemic Mountain. They wanted to know how special education laws applied during a pandemic. Would their child still have IDEA (Individuals with Disabilities Education Act) protections? Would they have special education support virtually? What would happen if school did not resume? What is telehealth and how will it work?
Our organization, PATH/FVCT has over 34 years of experience in parent support. We are very fortunate to be connected to two national support organizations, Parent to Parent USA and National Family Voices. These two organizations, along with the New England Regional Genetics Network, became trusted entities for information on COVID-19 and all other matters that families were dealing with. PATH/FVCT is sharing this pertinent information through our social media channels and our newsletter.
We have shared links on updates in special education in Connecticut, articles and resources on helping families cope during this time, and social stories, which use a picture book format to explain more difficult concepts to children with special needs. In addition, the staff at PATH/FVCT is also offering weekly educational sessions via Zoom webinars. These weekly sessions that take place every Tuesday from 6 – 7 p.m. (EST) feature educational experts that answer questions and provide pertinent information on special education support in a COVID-19 world. Each session also features a parent’s perspective of home-schooling their child with special health care needs. PATH/FVCT staff have also participated in the education of health professionals in collaboration with the Weitzman Institute part of the CHC (Community Health Centers) network.
PATH/FVCT continues to offer our one-to-one parent support training for families that we call Listeners. This program, which has been in existence for over 34 years, connects families with a trained one-on-one support Listener. Our Listener Program is the heart of our services. It helps reduce isolation by connecting parents with someone who understands what they are going through.
PATH/FVCT runs a program created for/by youth with special needs/disabilities ages 13-26. CT KASA (Kids as Self Advocates) teaches youth to become self-advocates and change the systems that affect their lives. CT KASA members are meeting virtually via Zoom and welcome other youth to join them for peer support.
Even in these difficult times of social distancing and physical separation, we want you to know you are not alone. PATH/FVCT is still here for you and we will help you to move that invisible pandemic mountain.
For more information on the rest of our programs and how we can help you, please visit our website or telephone: 203-234-9554.
Nanfi N. Lubogo is Co-Executive Director of PATH Parent to Parent/Family Voices of CT (PATH/FVCT) in North Haven.
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