While the pandemic has had a devastating effect for all students, most special ed students have had a particularly difficult time adapting to distance learning. They miss their routine, their therapies, and the opportunity for socialization. Parents who have had to step in as “teacher and therapist” during distance learning often report that they are extremely stressed out and feel like they are failing. Educators and parents alike are struggling over how and when to bring students back safely to school, especially when trying to enforce social distancing with students who don’t fully understand the need for distancing and masking to help prevent them from contracting the virus.

There has never been a one-size fits all when it comes to education for children with Dravet syndrome. However, things have become much more complicated in the time of COVID and there is now an extra layer of anxiety for caregivers. Back-to-school has always been a little different for caregivers in the Dravet community – we are reviewing IEPs; looking at gaps in services for our child; filling out forms; negotiating bus routes; worrying about adequate resources; and often trying to prepare our child for a new teacher or classroom. In addition we face the onerous task of making sure the teacher understands our child – their health conditions; their strengths and limitations; as well as any skills that may have improved or worsened over the summer. And then there is the constant worry about our child’s social and emotional health. Will they make friends? Are they happy? Are they being bullied?

Each child’s educational experience will require a great deal of individualization and there is no one model that will work for everyone. Many caregivers in the Dravet syndrome community are struggling with anxiety and unanswered questions on whether and when to allow their child to return to a special needs classroom. How might special ed classes work this fall for students with significant disabilities? And what does that mean for your child and family?  

DSF is hosting a session on Back to School Anxiety in the Dravet Community, led by Patricia Dean ARNP, CNR, RN, the Clinical Coordinator of the Comprehensive Epilepsy Program at Nicklaus Children’s Hospital in Miami, Florida. Please register and join us on Tuesday, August 25th at 2pm est for this open discussion on the concerns and challenges caregivers are facing in making educational decisions during the pandemic. While we might not have all of the answers, we are here as a community to support and help one another the best we can.