Lessons for the Day of Remembrance in the COVID19 era

3 Apr

Let me put this more direct:
Everyone is stressed right now. If you think you are at your own limits, find someone to take over. Call family. Call social services. Call someone. Please.

It’s April. For some it’s “autism awareness month”. For others, we remember autistics and other people with disabilities who have been killed by parents or other caregivers.

It’s also April, the second month of “shelter in place” as the COVID19 pandemic brings the world to a halt.

There are two things which scare me more than anything else: losing one of my family and myself dying and not being here to provide for and protect my family. I’ve had to face these fears multiple times in the past. I’ve spent nights wondering if every text I got would be from my wife, who was at the hospital with one kid, telling me that kid had not made it. I spent a day with the misdiagnosis of a huge aneurysm in my brain. Just to name two experiences.

And now I face those fears again. I’m not very old, but old enough to be at risk. I look at my family and wonder about other risk factors. And I live in fear.

Let me focus on my autistic kid for now. It’s one thing in times of relative safety and security to say, “This kid is my whole world” (as are each an every one of my family). But when one faces the very real chance that in a year or two one or both of us may be gone, it gets very real, as they say. And as I face that reality, let me say a few truths:

My kid is not a “burden”. I don’t want that “burden” lifted by one or the other passing.

My kid is a joy. Sure, I want to live as long as I can to be there to support my kid. But I want to live as long as I can to spend time with my kid.

I’ve “walked in the shoes” of the parents who have killed their kids. I spend my life with a kid who is disabled, autistic, and in need of a very high level of support. I can not and I will not forgive or forget those who chose to kill their kids. I will forgive and support people who realize they can not handle the life they have and decide to let someone else take up the responsibility. I’ve traded emails with family members of murdered autistic kids, family members who would have loved to care for those kids. They walked in the very shoes of those who chose to murder. They cared for the same exact kids.

Let me put this more direct:
Everyone is stressed right now. If you think you are at your own limits, find someone to take over. Call family. Call social services. Call someone. Please.


By Matt Carey

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