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.
If you have to bring your adult child for care . . I was going to say, don't tell them they have autism. They might just chalk it up (odd behavior) to the illness. But then I realized, holy F--. How can you leave a child with autism alone with the doctors in the ICU with no help? You just can't.
Here's my plan: I will swear I had Covid and recovered, and take my chances and insist they let me stay with my child. But what does someone like Kim do who has 3 children? ARGH. We need to call our congress people, our senators, tell these stories and concerns. They need to think of this. They need to know about this tsunami of adults with autism who are emotionally very young. Holy God what a nightmare. Prayers all. I feel that no one has our back, we can't trust anyone, all sides are either corrupt or insanely cult-like delusional (they see only their side and their approach as the right ones). Some won't admit the problem until they can personally profit from it. . Some will only consider 1-2 solutions, all highly profitable for the people who have their ears. IT's truly truly horrific in so many ways.
BUT maybe, just maybe, a lot of people are waking up to the incompetence of the CDC. That that is yes, possible that maybe they aren't perfect gods. That maybe focusing only on vaccines for flus and contagious diseases over the years, but not developing treatments, was STUPID. I have been hearing a lot of people who are shocked that the FDA and CDC were able to do things that sound corrupt and unscientific durign this crisis. Our community isn't shocked at all. We have a head start here, because we don't have to go through the hell we went through the day we figured out how our children got injured. We've already faced that reality.
. These are people who SWORE to me that the CDC etc were angelic souls who only knew research, too pure to be bought. These friends, once sanctimonious and a bit arrogant about my "stupidity" in avoiding vaccines, are looking shocked and scared. This is very sad, I know how painful it is to face the betrayal and terror that so much of our govt is NOT looking out for us, but perhaps, finally, the truth will out.
Posted by: Anita Donnelly | March 30, 2020 at 08:20 PM
Same here Kim feels like were on holiday no get him here there every - where. We have from sea level an 870 ft hill to climb most days he goes up it like a goat and he can’t believe he has us old guys for parents...we get the folded arm stare as he waits for us to catch up! All in all, less stress whilst this false pandemic plays out and forbidden science is absolutely forbidden.
Pharma For Prison
Posted by: Angus Files | March 30, 2020 at 02:37 PM
Hey; I feel for you. Same for my daughter. She grinds her teeth. She had beautiful teeth, but has lost four of her big back ones, and is waiting for a crown on the fifth one that had to have a root canal on it because of this virus scare.
And I have always thought that grinding of teeth she had even as a small child was some kind of neurological disorder from the vaccines. That and Kawasakis she had. But can we prove it; says our government.
Posted by: Benedetta | March 30, 2020 at 10:38 AM
How long is it acceptable for people, such as your daughter, to not have dental care? How long can you quarantine- or isolate- or whatever it is - healthy people?
Here in NY the Governor has stated that maybe bringing college kids home to be with older people wasn’t the best public health policy. He has also said something similar about shutting businesses. Yet he did these things and continued to do them.
Posted by: 4Bobby | March 30, 2020 at 10:18 AM
"I feel like Americans were asked to retire en masse in March"
I suspect millions of Americans don't feel like they were ASKED TO RETIRE … INSTEAD .. THEY FELL LIKE THEY WERE FIRED.
Our young man is having a rough time of it .. he ALWAYS accompanies his dad for weekly shopping .. enjoys picking his own favorite items off shelves .. and now he can't go with dad and we are not sure he understands why not. Same when going to his favorite restaurant APPLEBEE'S .. no longer allowed inside and must take out instead.
Still with it all .. god bless him .. he is such a good natured young man … he takes things in stride .. it is best that he avoid being around those he loves in a public setting .. such as school .. because "social distancing" is a concept that he wouldn't understand.
Posted by: Bob Moffit | March 30, 2020 at 08:18 AM