By Kim Rossi
There's a word - bloviating. It's when someone speaks out of their blow hole, if you get my drift. Like most of you, I've been on social media off and on and on and on for days. Everyone's an expert. No one is an expert.
We are a unique community. We are the autism community. And as splintered as we have been over the years, no one really understands our plight like our fellow autism parents. Many years ago, I coined the word "crapisode" in a Huffington Post piece that went, pardon the phrase, viral. Today, I am coviating.
Routine is a basic human need. Sure, we pretend to dream of a life with no cares, no work, just laze about all day, on a beach, a mountain, a lake, wherever. In reality, total lack of structure is not so great. Routine is extra important to our kids, to adults with ASD, our readers who themselves are on the spectrum.
I feel like Americans were asked to retire en masse in March. What you have is what you have. $1200 from the Federal Government? A bandaid on a hanging limb. We heard last night that we are to remain in self-imposed quarantine until the end of April. That's 31 days from today.
My daughter's autism school furloughed most of their staff as of this weekend. My older daughters' day program provider is trying to cobble together hours for their staff by placing them in group homes for a shift here, a shift there. I have a fantastic team that provides me with respite hours. I can't use them. They aren't getting paid.
So many of us believe precious little of what we hear from CDC, the White House (no matter who is in office), state politicians. We're being buffeted like corks in the ocean.
I'm worried about domestic violence across the country increasing, not just in homes with special needs children or the elderly. I teach self-defense. Abuse runs across every social strata. Shelters are closed. Where is a person to go to seek help today?
One of my girls has a cavity that needs filling. Her appointment at Bridgeport Hospital (autism means FULL sedation in a hospital setting) has been postponed indefinitely. She might lose that tooth, which KILLS me, a dentist's daughter. My daughter's medical practice sent a text that they will be offering telemedicine for the time being. If she breaks a bone, I'll be sure to press #6.
If I get sick, what happens to my daughters? I'm a single parent. I pulled out my "papers" this weekend to review them. And nothing I wrote down would work during this Covastrophe. None of it.
I wrote on Facebook about the triage plans that would EXCLUDE the disabled from getting ventilators. Triage not because of severity of injury or likelihood to recover, which is the norm, but based on USEFULNESS to society. I later read that this would not happen, ADA would still be in place. I had my first real belly laugh in days. My girls have never gotten a hearing or vision test in the doctor's office because of their autism. They have never had a gyn exam because they'd need sedation and they have no medical need. So we'll just wait until something terrible happens to them. We're denied medical care at every turn because of autism. Many years ago, Bella broke her arm, and the doc who set it made a boo boo and it ended up bowed. I took her to the prestigious Hospital for Special Surgery in New York for an opinion. The asshole doctor looked at my daughter, glanced at her bowed arm and said IN FRONT OF HER - "Well it's not like she's going to be a ballerina." So if you think for a New York minute our loved ones will get a ventilator, I have a bridge in Brooklyn to sell you.
On the flip side.... I'm not all doom and gloom, believe it or not. The girls and I have kind of enjoyed our laid back days. Sure, the lack of routine is rough at times. But my girls, and I hope your kids, are pretty damn tough. Resilient. After all, they have lived in quarantine all their lives if you think about it.