No, It's Not OK to Leave My Child Behind, Even in a National Crisis

As a disability advocate and a parent of a child with autism, I’m hearing stories from other parents of children with autism that break my heart! Here is one story from a fellow mom who shows us all the ways remote learning can never measure up to the supports her child received in a traditional school setting as we knew it. My friend preferred to keep her family’s situation private, so we’ll call her Christa.

Here’s Christa’s Story 

What’s working? Well, not a lot. It’s overwhelming to follow everything with a child who can do nothing and who wants to do nothing. Everything is so disjointed, unfamiliar, hard to know what the present levels of achievement are. We are not signing in to attendance every day, because this is not a substitute for school. 

Things that work in school don’t transfer to home. Some of that is related to the fact that none of these materials have ever been used at home before, and some of it is related to my kid expecting that Daddy is the fun guy and he shouldn’t be making her work. 

There are two different iPads, one Chromebook, printed materials, laminated materials, some curriculum in Google Docs, some in a series of emails from related services, some in Canvas, some Zoom, some Google Hangouts, some FaceTime. 

There’s tons of support from people, but this is in the form of them coaching my husband in ways to teach. Nothing changes the fact that there is no one keeping my kid at the table but him. By the time he pores through unfamiliar materials, he’s lost her attention. 

Everyone Else Seems to Be OK, While My Kid Is Left Behind

It hurts. It hurts to see other families handle it with ease. It hurts when they talk about kids having storytime with their teacher—not because my child’s teacher wouldn’t do it, but because it would take a roll of duct tape and some drugs to get her to sit long enough for a story. It hurts to see that even when the adaptive PE class is hosted online, my kid doesn’t seem to know anything. 

[pullquote]It hurts to watch this fail her and it hurts to watch a society so eager to embrace this and to leave her behind.[/pullquote]

We are facing a national crisis and everyone is OK with leaving my kid behind. It hurts. It hurts to work my day job in the next room listening to my husband try and try and try and my child just not want to participate or not understand the material. 

My child has a 1:1 aide because it’s necessary and putting an aide on video conference is wonderful so she can see people she loves, but it’s not the same as having an aide for behavioral support. 

It hurts to see the pain in the eyes of teachers who want to support her but who cannot do what she needs from a distance. It hurts to accept that [pullquote position="right"]the only way through this crisis is to accept that my child will not be educated.[/pullquote]

There is no happy medium, but there are pockets of happiness watching a movie together or singing on the porch with the whole neighborhood in the evenings. 

This Is Just One Mom’s Story

No one, especially not me, is blaming schools and teachers. The accommodations that our children need are not available with this quarantine. At best, that means that our children are not getting their educational goals met. At worst, this is causing incomparable harm and causing our children’s life-long struggles. We’re hurting. As a mother, there is nothing more important than the health and care of our children. The best Mother’s Day gift would be to create a plan that will truly help our children with disabilities.