It is two days after the Women’s March and I am scrolling my Facebook feed, trying anything to distract from the fact that my youngest child is behind a set of doors, anesthetized, while technicians shoot images of his brain.
When our elected officials threaten to upend Medicaid, they are threatening my son’s life. Full stop.
And then our child is born autistic, and here in front of us is that level of aloneness we have worked our whole lives not to feel. And to love them as deeply as we do, we have to accept our total separation.
This limitless love and well-honed intention could not have prepared us for a disaster as profound as chronic illness.
In our family, being the eldest brother doesn’t always mean meeting your milestones first and sometimes a younger sibling has to step up.
I wanted what I’ve never wanted—to be told, moment by moment, what to do next. I wanted the pressure of knowing what’s best to be anyone’s pressure but mine.
I felt like Valerie and I were all alone, stranded with our precious flower, unsure of how best to help our son but determined to protect him no matter what.
I want him to fulfill what he is capable of, just like any parent—but I admit there is a part of me that worries he will fall through the cracks of this loud world.
I didn't write a real letter; it seemed a bit silly, but I wish I had. I want them to know. I want their teachers to know about our family …
Autism is a wild and lonely predicament. It is energy and fear, tunneled focus and aimless wandering.