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Facing 'Decision Fatigue' About School for My Son With Disabilities During the Pandemic

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When COVID began to shut down our local community, my family knew we would make it through the rough patch.  We have survived many hospital stays, months apart due to medical issues, cherished loved ones passing, and much more.  Well, that rough patch has turned into months and months of isolation for my children.

As an introvert, I can send a text message to a friend and feel connected. But, I am an adult (at least legally). I have strategies and resources available to help me when I fall short as a human. My poor kids do not have their community right now. I would venture to say most children do not have access to their community right now. Video messaging can only do so much. We are all facing this change in our everyday lives.

It feels similar to the decision fatigue I would feel when my son was hospitalized.  I would have to choose what medical path we would take and pray I made the best-informed decision. After all, my son’s life was on the line with every lab update, medical diagnosis, and more.  I would listen to doctors, reach out to parents who had been through similar situations, and research the medical information available on the internet.  COVID is very similar, only there are no other parents who are farther down the road and can warn us about the speed bumps and potholes.

This prolonged COVID situation feels like we are constantly making life-and-death decisions for ourselves and our children. What if I mess up? Will my family perish because I made the wrong decision? When should I choose quality over quantity? These are questions most parents of kids with disabilities are used to asking themselves. Now, every parent is feeling the strain.

The start of the school year has proven to be exceptionally difficult for parents.  The prevailing authorities are dictating options for us to choose from.  All the options pretty much stink at this point.  My specific school district started the school year in a completely virtual online learning model.  My children are lucky if they have seen their teacher wave to them as we picked up learning supplies in the drive-thru lane. I am not even going to touch on the difficulty of K-12 virtual learning. I think we could all write a book after two weeks into the new school year. What is our quality right now?

Gail's son using his AAC device.

Quality is important. The teachers and therapists working with my children are bringing quality every day. My son with Down syndrome, autism, and many medical issues uses an Augmentative and Alternative Communication (AAC) device to communicate. He only used his device sparingly before COVID began. We as a whole family have tried to model one to two words to help him learn this new way to communicate. He has been using single words on his device to communicate.

On day eight of virtual learning, he was in his virtual class and he told his teacher “I love you.”  In the following few minutes, he found a word I have never modeled.  He selected the word class, then the bus icon, and looked at me with eyes of hope. He was asking me if he could ride the bus to school to be with his class! I tried not to cry as I repeated it to the teacher.  I told my son that I wanted him to be able to ride the bus and go to class again too. Next, I took a quick photo so I could remember this moment.

He wants quality just like so many of us. His pediatrician has notified us that he should not attend in-person schooling yet due to his medical history.  So, what do I do? My local school district sent out a survey that same day for parents to choose if they would like to move to hybrid learning (two days in school) or stay 100% virtual. What is my choice?  How do I respond?  My heart is aching for my children to have access to their friends again. Decision fatigue is real. When a child who is nonverbal figures out how to ask to go back to school, what do you do?

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Originally published: September 23, 2020
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