The reality of severe autism during shelter-in-place

“How come you can go to the gym but my kid can’t receive his essential therapies that are written in and signed on an Individual Education Plan?”

 The author’s fridge, broken, covered in coffee grounds, thanks to #severeautism.

By JH

This is the reality of #severeautism in shelter-in-place. Months of being isolated. This is a small piece of it.

An aggressively pulled out broken freezer (I’ve tried locks in the past) covered in coffee grounds. Why? Anger & frustration from a confused and frustrated #asd kid.  

I see on my private Facebook group of severe autism parents that we are all in hell. Holes in walls. Electronics thrown across a room. Bite marks. It’s like trying to get through a ‘full moon’ kinda day every day.

We have have been very stringent since the beginning with self-isolation; we have a family member with a compromised immune system. As I begin to watch restrictions lift all around me, I get more and more angry and resentful. I’m the first to admit it’s hard to watch everyone go out to eat, vacation, finally get their hair done after complaining for so long.

A lot of us #specialneedsparents laughed in the beginning because being confined to home due to a challenging child is our norm. But AT LEAST we had day programs. We had school as one of our only respites. Our children go to school for so much more than education. They receive many essential therapies such as speech, applied behavioral, occupational, life skills. Now, all gone.

At 11, our son is still working on being able to sit for longer than 30 seconds. And when there’s a long break, there’s major regression. There’s added behaviors. There’s heartache. I see daycamps opening back up. I see families going to the beach and visiting parks and hanging out with other friends and families. Yet our special kiddos are still supposed to be ‘educated’ through Zoom?

Have you seen how fast they are? Watch me chase him in the backyard with a laptop trying to get him to connect with his speech therapist. He literally laughs at me.

How come you can go to the gym but my kid can’t receive his essential therapies that are written in and signed on an Individual Education Plan? I know it’s not your fault. But I have reached out to both @gavinnewsom and my Assemblymember with no response. My son’s special needs school is amazing and is a huge part of his growth. But their hands are tied. Who has the answers?

JH is the mother of a son with severe autism. She is based in the San Francisco Bay Area.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.

Jill Escher, President

Jill Escher is president of the National Council on Severe Autism and the mother of two children with nonverbal forms of autism. Through the Escher Fund for Autism she promotes and funds research on the genetic toxicology of autism and related neurodevelopmental conditions, and she has served on the governing council of the Environmental Mutagenesis and Genomics Society, where she co-chairs its Germ Cell and Heritable Effects special interest group. She was president of Autism Society San Francisco Bay Area from 2013 to 2019 and, through her family business, Claradon Properties, provides housing to adults with developmental disabilities in the Bay Area. See more of her work at jillescher.com.

https://www.jillescher.com/
Previous
Previous

Immersed: An Unflinching Look at Severe Autism

Next
Next

Is the U.S. autism surge real or a mirage? There’s an easy way to find out.