Coronavirus (COVID-19) March 3

3 03 2020

People are panicking.  Today I went to pick up a few things at Walmart.  The hand sanitizer I expected to be gone; however, I didn’t expect to see all the Clorox and Lysol wipes to be sold out.  I looked at the man who was looking for an alternative.  I said, “People are panicking needlessly.”  I told him and wrote down for him my alternatives that will work just as well.  Also, all the alcohol was gone (not the kind you drink but the kind you use to sterilize things).  I saw that as I was getting antibiotic cream because we were out of that. I didn’t see anything else that might have disappeared from the shelves but I’m sure there probably is.  I had a specific agenda of things to get (you know, like yogurt, hornet spray, things like that). 


Last night I saw someone post something on the mayor’s FB page and said that their loved one tested positive for coronavirus but they told her she didn’t have the China coronavirus and accused the mayor of the city of a conspiracy.  I decided to reply to him.  I said the common cold is a coronavirus (of course I’m wondering how their loved one was tested to begin with since kits are not readily available but I didn’t say that), but the one in China is a specific coronavirus called COVID-19.  Coronaviruses included SARS and MERS, too, but it also included the common cold so stop freaking out.  What they told them at the hospital was accurate and it wasn’t some kind of conspiracy. 

My favorite infectious disease physician, Dr. Matt McCarthy, of NY-Presbyterian Hospital in New York City (who I believe has finally gotten that 1 person in NYC diagnosed that he was speaking of the other day that he said they all believed had the virus but was having problems with the testing process).  His comments on television today: “Before I came here this morning, I was in the emergency room seeing patients.  I STILL do not have a rapid diagnostic test available to me.”  The host of the show asked, “That’s easy to do.  Is it hard to manufacture?”  Dr. McCarthy replied, “It’s easy to do for some countries.  What happened in the United States is the CDC created a test, sent out to 50 states, then said, “Hold up.  Don’t use it.  Let us fix it.”  It’s now March.  We hear that it’s coming very soon, but I’m here to tell you right now at one of the busiest hospitals in the country, I don’t have it at my fingertips.  I still have to call the Department of Health.  I still have to make my case—plea—to test people.  This is NOT GOOD.” 


You could tell how frustrated he is.  And I’m certain he is talking about rapid testing like South Korea has with their drive-through process and also now China. 

Jeremy Konydyk is a senior policy fellow at the Center for Global Development. His research focuses on humanitarian response, USAID policy reform, and global outbreak preparedness.  Today he said his frustrations were 1) We have NOT had a disciplined, well-organized federal response; testing is the perfect example of that; there is a critical bottleneck that didn’t need to exist.  2) The fact that they didn’t solve this much earlier. 3) They don’t have any organization and focus that they need.  He hopes that with some of the reshuffling over the last week that it will start to move in that direction. 

As far as the charts below, cases confirmed remained stable in Afghanistan, Armenia, Azerbaijan, Belarus, Brazil, Cambodia, Croatia, Denmark, Dominican Republic, Ecuador, Egypt, Estonia, Finland, Georgia, Greece, Ireland, Israel, Lebanon, Lithuania, Luxembourg, Macau, Malaysia, Mexico, Monaco, Oman, Nepal, New Zealand, Pakistan, Philippines, Romania, San Marino, Sweden, and the UAE. 

Sadly, new to the list are Andorra, Indonesia, Jordan, Nigeria, Portugal, and Senegal.  

All other places have increased their numbers.  The United States, now at 103 diagnosed cases, will see a huge jump in numbers once the test kits become more readily available but remember that is because of better diagnostics not necessarily that it is spreading.  In the meantime, wash your hands well, keep your hands away from your face and mouth, use a paper towel or your shirt sleeve or tissue to open door handles – take simple precautions; don’t panic; don’t freak-out. 

The map & charts were updated 12:36 a.m. Eastern Time on March 3.





Coronavirus (COVID-19) 12:22 a.m. March 2, 2020 update

2 03 2020

Coronavirus (COVID-19) Update March 1, 2020

Hand sanitizer is gone.  My sister, who is a nurse, warned me this weekend it was probably gone by now.  I told her we weren’t going specifically for that; we were going to do early hurricane supply run.  After all, hurricane season starts June 1. 

We aren’t panicking; we are being practical.  If we don’t use the supplies we had planned to get yesterday, they will last well past hurricane season this year.  We viewed it more as “we’re doing our hurricane supplies shopping 3 months early.”  No one else was panicked in the store, but you could tell the tone was different with some people; some people it seemed that was just doing their normal Sunday shopping.  We were going up and down the aisles to be sure we didn’t miss anything we needed that might not be on our list, like toothpaste for Jeff (while not a hurricane supply, he actually needed it).  We turned our head and I nodded to my right; I said to him, “sanitizer is gone.”  I told him no worries! I had cleaning hacks we could use to get around that:  Essential oils work.  So do bathroom and kitchen wipes.  Just grab a few before getting out of the car (making sure the lid closes—he forgets to do that part of it at time—and stick it in a snack Ziploc bag that would easily fit in his front pocket and will keep his pants dry. 

Here is what I learned today about COVID-19

HOW IT IS SPREAD:   It is spread from person to person.  Between people who are in close contact with one another (within about 6 feet).  Through respiratory droplets produced when an infected person coughs or sneezes.

WARNING SIGNS:  Fever, cough, shortness of breath.  It will occur 2 days to 2 weeks after exposure. 

DIFFERENCES BETWEEN THE FLU AND COVID-19:   The flu:  Transmitted through respiratory droplets of an infected person.  There is a vaccine available (their best estimated guess based on the past and possible one for the upcoming year; they aren’t always right about that second part).  There are 1 billion+ cases worldwide; there are 291,000+ related deaths.  The average rate is about 0.1% (so one-tenth of 1%). 

COVID-19: “May” also be an airborne virus.  No vaccine available.  86,000+ cases worldwide; 2900+ related deaths.   In the February 18 China CDC Weekly, they were putting the death rate at 2.3% on Mainland China.                              

According to Dr. Natalie Azar, masks on your face will not work.  The ones you are seeing that people can just snap on will not filter the viral particles that you can.  There are N-95 masks that are made for healthcare workers only at this moment.  Yes, you could buy them on line but the CDC are asking people not to do this; it will create a shortage and they are needed to first responders and healthcare workers.  The vast majority of people, says Dr. Azar, are not at risk of being exposed currently and the vast majority may just have an experience of a mild illness. 

The Life Care Center in Kirkland, WA

The first patient to first exhibits signs and symptoms of this virus was 6 weeks ago.  Yep.  Six weeks.  A worker and a resident have tested positive.  There are 288 staff and residents there.  There has been no travel as far as they know, but they are doing their protocols right now.  I did this for a friend to help them understand the contacts problem.  The CDC measure that each person will encounter 1.5 to 3.5 people close enough to spread something (some more and some less, but an average). 

As of March 1, six people infected with 288 total of people who may turn up positive once tested.  A resident of the facility died of the virus and three more are in critical condition.  Let’s just go with the 2 individuals we know about and just say they are patients zero—which they aren’t but the math has to start somewhere: 

1 person x 3.5 contacts = 3.5 (4) people exposed

3.5 people x 3.5 contacts = 12.25 (12) people exposed

12.25 people x 3.5 contacts = 42.875 (43) people exposed

42.875 people x 3.5 contacts = 150.06 (150) people exposed

150.06 people x 3.5 contacts = 525.21 (525) people exposed

525.21 people x 3.5 contacts = 1838.235 (1838) people exposed

1838.235 people x 3.5 contacts = 6433.8225 (6434) people exposed

Now these people have had symptoms for 6 weeks.  You can’t use the last number and figure it out because they exponentially get higher as every day passes.  BUT, we can multiple 288 people in that facility and over 7 days, the total number of people exposed comes to 1,852,972 people.  In a week.  Of course, some of the contacts will be similar contacts (like a daughter who visits every day).  This is just an illustration of how things can multiple out of hand pretty quickly. 

One quarter of the firefighters were in quarantine on Sunday because they had been to that nursing facility.  The hospital has asked visitors to stay away.  A nearby college campus spent the day cleansing its campus because students had visited that nursing home. 

King County earlier on Sunday announced two additional cases of COVID-19 that were unrelated to the nursing home and those patients were in critical condition at hospitals in Seattle and Renton. 

MAPS AND UPDATED INFO

The map says the US has 88 cases; the detailed breakdown by country only says 87.  The map was updated shortly after midnight on 3/2/2020; the detailed breakdown was created at 10:15 p.m. on 3/1/2020. 

As far as the world totals, all countries showed increases in their totals except for Afghanistan, Belarus, Brazil, Cambodia, Estonia, India, Japan, Kuwait, Lithuania, Luxembourg, Macau, Monaco, Nepal, New Zealand, Nigeria, North Macedonia, Oman, Pakistan, Philippines, Romania, Russia, Thailand, Vietnam, and UAE. New to the list included Armenia, Czech Republic, Dominican Republic, Ecuador, and Ireland.

The chart below was updated at 10:15 p.m. March 1, 2020

The first column of numbers are the number of cases; the second is deaths.




Coronavirus (COVID-19) Where We Are As of Feb 29

29 02 2020

Coronavirus (COVID-19): Where We Are Worldwide Feb 29, 2020

As of Friday evening, the US has only tested 460 people. South Korea has run more than 35,000 tests (see more about their drive-through testing process). The test the CDC developed was defective; the labs running the tests are not confident with the results. Now the state of New York is going to be making its own coronavirus test after the CDC’s has repeatedly failed.

The first person, as far as we know, who died of coronavirus in the United States: Dr. Robert Redfield of the CDC said the person had no known travel disease. The only one in Washington State with no known travel history was a teenager. Trump said, in the same conference, that the person who died was a woman in her 50’s that was medically high risk. Will you all PLEASE GET YOUR MESSAGING STRAIGHT? We don’t have much confidence in your handling in this if you can’t get your stories straight in the same news conference. Deepest sympathy to the family and friends of that individual. (Update 3/1:  The person who died was a man in his 50’s).

How is the rest of the world handling this:

According to Kaiser Health News:

South Korea: There were 28 cases of the coronavirus in South Korea on Feb. 13. Four days had passed without a new confirmed infection. President Moon Jae-in predicted that the outbreak would “disappear before long,” while the prime minister assured people that it was OK not to wear surgical masks outdoors.

As it turns out, the virus had been rapidly spreading at the time through a large, secretive church in Daegu, where it has since mushroomed into the largest epidemic of the coronavirus outside China, with 2,022 cases, including 13 deaths.

Now the president is facing a political backlash over his response as the number of cases continues to climb — 505 new infections on Thursday alone. One million South Koreans have signed an online petition for his impeachment.

BUT: From inside their cars, people can be checked by medical staff in protective clothing and goggles who will lean in through the window at a new drive-thru coronavirus clinic in South Korea. The entire procedure took less than 10 minutes. One individual tested said this was easier than the 1-hour wait at a clinic. (1-hour wait???—let that sink in for all of America who can count on a 6-hour wait during normal hours with no epidemic in any ER of any hospital in this country).

Japan: Apparently closing the schools in Japan shocked parents after weeks of bungling their response to this virus.

USA: We already know that the uninfected people on the cruise ship were placed onto a plane with infected people on the same cruise ship by the Trump administration over the deep objections of the CDC. And thanks to the whistleblower in HHS, we found out that they were allowed to move freely on and off the bases [with infected people on site] and at least hotel and leaving California on a commercial flight. They were visiting Travis Air Force Base. The Safety protocol training did not happen until 5 days after their assignment.

Then we got word that a woman with no known travel history got the virus. Guess where she was living? In the same county as Travis Air Force Base. She was first treated at a hospital 15 minutes from Travis Air Force base. You can bet that infection occurred when someone who was unprotected from that HHS group went into the general public and crossed paths with this woman.

On Thursday, point man VP Pence was in Florida at a $25,000 a plate fundraiser for congressional Republicans and on Friday repeated a Rush Limbaugh theory that the coronavirus was like “the common cold.” It is NOT.

A woman in Florida went in to get the coronavirus test; she had insurance; her insurance refused to pay it; it was $3000. This is a public health crisis; no one should be getting any bill.

Myths and Facts

Myth: This is just like the flu.
Truth: The symptoms are flu-like, but the mortality rate is 15-20 times higher than the flu. (per Dr. McCarthy)

Myth: Trump keeps repeating that there are only 15 cases.
Truth: As of last night, there were 62 confirmed; according to Dr. Matt McCarthy there are probably a lot more infected that just don’t know it because we aren’t testing in mass volumes.

Myth: Trump says it will disappear like a miracle in April.
Truth: That is not what the CDC expects.

Myth: Trump is saying that this is a conspiracy by the Democrats to take his presidency down; that its another hoax.
Truth: This affects everyone; this virus isn’t going to ask your brain what your party designation is. It’s up to his administration to show leadership competence or not. Competence would probably get him re-elected; incompetence will most surely seal his fate otherwise.

The world and of the US updated Feb 29, 2020

Coronavirus Map 1 Feb 29

Coronavirus Map 2 Feb 29

Coronavirus Map 3 Feb 29

 

Coronavirus Map 4 US cases Feb 29

 





Coronavirus Update Feb 28, 2020

29 02 2020

COVID-19 (Coronavirus) Update Feb 28, 2020 as of 11 p.m.

The first COVID-19 cases have now been reported in Belarus, Lithuania, New Zealand, Nigeria, The Netherlands, and Mexico. Japan’s Hokkaido (one of the main islands) declares a state of emergency. Switzerland bands all events over 1,000 people. Kenyan medical personnel are taking charge of border crossings. In the US, the official count of infections stands at 60 as of this morning, but once again, they believe the numbers are much higher as people are likely thinking they have the flu as they share similar symptom presentation. (Has anyone told Trump yet that Dr. Birx, an Obama appointee, is leading the task force now and reporting to Pence who is supposed to be leading the task force?)

Trump was at a rally in South Carolina on Friday saying that this is all a Democratic hoax. You can understand then when the mixed messaging from the administration makes the stock market react, or maybe you can’t because you don’t care; remember that people’s 401K’s are tied to the stock market.

While putting this blog together, the news came through that San Antonio, Texas has 11 confirmed cases of coronavirus in San Antonio.  Those infected with the coronavirus, per the CDC, included 9 from the Diamond Princess cruise ship, one from the Wuhan group of quarantined passengers and one that was transferred from the Marine Corps Air Station Miramar in San Diego, CA. One-hundred-forty-five people remain under quarantine in San Antonio after two planes—one from Wuhan and one from Tokyo—arrived at Joint Base San Antonio Lackland. Ninety people from Wuhan were released after clearing quarantine without contracting the virus. Two of those infected were part of the group that came from Wuhan.

An HHS Whistleblower has now come forth (seeking immunity from repercussions) alleging that the workers met with the first evacuees from China’s Wuhan Province without proper training and without proper infection control or appropriate protective gear. [I apparently know more about infection control than an HHS person with any common sense should have known—I spared my entire family from my bout with the flu in January that lasted 2 weeks. Also when I had surgery and my husband had to change my bandage on my spine, I watched him and every time he broke sterile precautions, he was made to start at the beginning (for example, he would put on gloves, but then touch the sink top, or scratch his face, or blow into his glove to get it on his hand. He got really good after we went through a whole box of gloves the first few dressing changes).] Also, VP Pence is controlling all messaging about the virus which includes health officials. Yes, be suspicious about this. I noticed that on all the channels I was looking at that if someone from the CDC was talking on the news, they spoke their minds. That should reassure you AND make you trust what is coming from them and no others.

My favorite infectious disease doctor, Dr. Matt McCarthy of NY-Presbyterian Hospital and author of the book “Superbugs”, was on a news segment today. The question was asked, “What’s changed since? [he had spoken last].” He said, “A lot has changed. Two days ago, I was here saying we’ve got to focus on testing. Now we have to focus on three things. We have to focus on these drug shortages. That’s the big news going on right now is that what people don’t realize—your viewers may not realize—is when they put a pill in their mouth there are a number of different compounds inside that pill. There is only one that really matters. That’s called the API (active pharmaceutical ingredient). A lot of those APIs are made in China and if we cannot get that API we can’t get to your drug and we’re just starting to see the tip of the iceberg with this. There is the first coronavirus-related drug shortage in the United States. That’s a big problem. And I’m going to say, it’s not just the APIs. We also have to worry about medical devices. We’ve got a whole lot to be worried about. I know we have this Task Force that’s coming out and saying, “Don’t worry; everything’s fine.” Well I can tell you things are not fine.”

How badly did Trump sabotage America’s coronavirus response? Efforts included reducing $15 billion in national health spending and cutting the global disease-fighting operational budgets of the CDC, NSC, DHS, and HHS. Neither the NSC nor the DHS epidemic teams have been replaced. Trump said it is no problem; he can get them back whenever he wants them. Can he? The answer is “no” he can’t. In previous administrations people in these agencies would work with and respond to health crises for long periods of time which is essential for a team to work efficiently and trust one another. Drills were done all the time for different case scenarios, much like a fire drill, or sadly active shooter drills, to work out problems when the emergency doesn’t exist so you aren’t having to take time out to fix problems while time is of the essence.

Will this get significantly worse? Dr. McCarthy states (to a question if the numbers are going to get higher): “Absolutely and it is spreading. We aren’t testing at full capacity. We are starting to roll out tests. We are getting more people done.” The interviewer interrupts and says, “So people who are walking around this building who don’t feel so well, and they have it?” Dr. McCarthy responds: “Absolutely; that is a possibility. The concern I also have is that the people who are getting tested, it is a tremendous delay. There is somebody in New York City we think who might have coronavirus. We can’t test them in this city. We send the test to Atlanta, to the CDC; that’s an unacceptable delay. We’ve got to fix that. When you see the testing change to where we can test, at the bedside, which is called point of care diagnostics, that’s when we can actually start to have some certainty about what’s happening. That’s when we are going to start getting real numbers, that’s when the markets are going to stabilize, but until then it’s going to be a guessing game.”

The interviewer asks: “What are the symptoms?” Dr. McCarthy responds: “It’s much like a flu-like symptom. So, you have a runny nose, fever. You’re on the subway and somebody sneezes on you this could ABSOLUTELY spread like crazy. And so, when you have the administration censoring experts, people like Tony Fauci, who is the most respected infectious disease doctor in the country. When I wrote my book, “Superbugs” the first doctor I quote in that book is Tony Fauci. He is no longer allowed to speak freely. He has to clear every scientific statement with Mike Pence and it should be the opposite. Mike Pence should have to clear statements with Tony Fauci and that has to change.”

The interviewer asked what can the media be doing better do to prepare for this: Dr. McCarthy responded: “Asking tough questions.”

Interviewer: “To whom?” Dr. McCarthy: Number One Mike Pence—the buck stops with him. We’ve established the chain of command. I think Trump did the right thing by saying ‘here is the process; I’m putting this man in charge.’ We need to hold his feet to the fire and say 1) drug shortages, medical devices—what’s happening with these things.”

The interviewer: “Your average person doesn’t have access to the Task Force or Mike Pence but you know what they have access to? Social media. Their Facebook page. We already know there is so much disinformation. As it relates to medicine, how do people protect themselves at a time when—the situation around corona for anyone there are more questions than answers, and no doubt people’s Facebook feeds are filled with stuff.”

Dr. McCarthy replies: “What I always say I would never get my medical advice from a stockbroker. I would not go to somebody who is thinking about the stock market or thinking about viewership to get their medical advice. You want to go to medical professionals. I don’t wake up every morning thinking how the markets are going to fluctuate. I’m thinking about how do we to contain this pandemic. And the key here is to get reliable information and it is a mistake to tune into these cable news shows to try to sensationalize things and that’s the problem we have right now.





The Coronavirus (COVID-19) is Likely Already Here

26 02 2020

Habitual lying eventually becomes a credibility problem. For a president who has lied more than 13,435 times (as of October 14, 2019), credibility points have already been spent a long time ago. So is any competence. With the number of firings he has done, including the “best people he only hires”, the government is stretched pretty thin to respond to crises. He has dismantled the chain of command with regards to many things, pandemics being one of them. The entire pandemic chain of command, the global health security unit within the NSC, and the DHS epidemic team were pushed out; no one was ever replaced. Why? Because President Obama created it and Trump has to destroy everything he did because of a joke at a Correspondent’s Dinner that embarrassed him. Trump also defunded the CDC several years in a row. Last May, he fired his global health response experts that worked at the White House with the National Security Council and never filled these positions subsequently. There is no single individual in charge of this response—not a loyalist who will tow his lies but a real scientist that will give us facts. Now Trump’s just winging it with no real respect of science, but lots of respect for conspiracy theories.

The scientists within the CDC and elsewhere have a good feel for what is going on; the truth always comes out with the CDC speaking out today. The stock market and the course of this disease are things that Trump cannot predict.

It started with Twitter, as all things President Trump does. He posted that everything in the US was fine and under control. That’s a lie; it is NOT. It also said we were very close to a vaccine. That’s a lie; we are NOT.

In two days, the stock market dropped quite a bit, translating to $1.7 trillion of stock-market value. And what does Trump say? He’s worried that with the stock market dropping, it will hurt his re-election chances. I had to rewind what I was listening to and make sure I heard that right. It sounded like him because everything revolves around him, not any of the Americans who are affected.

According to Dr. Matt McCarthy, an infectious disease physician, an expert in superbugs at NY-Presbyterian Hospital in New York, he believes more people in this country are already affected and don’t even know it because it mimics the flu.

Dr. McCarthy, who is a practicing physician and professor of medicine, authored a book called, “Superbugs: The Race To Stop An Epidemic, said this during the interview: “We don’t need $2.5 million for a vaccine. We need to learn how to diagnose this. The FDA and CDC came out with a test and the test is flawed. The US is only testing 16 people a day. The rules [in our country] state that once a public health emergency is declared, certain rules go into place. One of them is that we, in the US, have to approve an FDA test.” His frustration is that he does not have the tools to diagnose this in the US at one of the best hospitals in the world. He said this about what needs to happen:  Liberalize the testing policy. We have to make sure it is a true positive as many companies will come out saying they have a test.

Per Dr. McCarthy: The CDC failed us here. We need a new process. We could reach out to labs all over the country to come up with a test, testing every patient in every hospital that presents with influenza symptoms. This is why the markets are destabilizing; too much uncertainty.

Today, the CDC said, “It’s not so much a question of if this will happen anymore, but rather more of a question of exactly when this will happen and how many people in this country will have severe illness.

Dr. McCarthy added that Trump asking for a vaccine is putting the cart before the horse. We have to learn how to diagnose this. Cases are skyrocketing all over the world and the US is eerily quiet because there is no testing for it. The have only tested a few hundred people.

Todd Ackerman of the Houston Chronicle said that there may be a vaccine to thwart the new coronavirus stored in a freezer in a lab in Baylor-UTMB. A vaccine that was being developed for SARS shares 82% of its genes with COVID-19. As the CDC confirmed today, any vaccine will take 1 to 1-1/2 years before it could be brought to the market.

In the meantime, we need to get a test to diagnose this, to separate those with COVID-19 and those who have just the flu or pneumonia. Our health care professionals need to be very cautious because they will wind up having to care for these patients and put their health at risk.

Suspect decisions made by Trump including allowing 14 healthy people to get on a plane after the CDC said they should absolutely not get on that plane with patients who had COVID-19.  Also telling the public that things will taper off “in the spring with the heat.” Again, there is no scientific basis for this statements. These decisions are not being made with the public’s best interest in mind. He also said we have a vaccine coming around the corner; again, not true-best case scenario per the scientists is that we are about 18 months away from something like that. Azar said we had 30 million masks but when pressed then he stated that is clearly not enough. When pressed into telling the truth, things are leaking out. Trump keeps finding himself isolated in these perspectives. Today NEC Chair Larry Kudlow said, “We have contained this. We have contained this. I won’t say airtight, but pretty close to airtight.” This is the guy that told people in September of 2008 to buy stocks as the markets were crashing. Acting Secretary of Homeland Security and Under Secretary of Homeland Security for Strategy, Policy and Plans, Chad Wolf, the agency that is coordinating the response to COVID-19, was ripped apart by GOP Senator John Kennedy of Louisiana for failing to do his job with his less than knowledgeable answers.

Dr. Nancy Messonnier of the CDC said she told her children, “While I didn’t think they were at risk right now, we as a family ought to be preparing for significant disruption to our lives.” I feel this is prudent. My husband and I discussed that perhaps we will get what we normally get for hurricane supplies early. Power could definitely be affected because people have to man the power plants. No power—no gas can get pumped. Perhaps buying some masks to wear. We are likely going to get our containers for gas so that we can use with a small generator we have that would allow us to keep our refrigerator on, or unplugging it to plug in a washer. Prescription medications would be difficult to get in advance, but over-the-counter medications we certainly can stock up on. We aren’t going crazy; just being cautious.

And what is Donald J. Trump concerned about? Not you. Not your family. Not anybody in this country. He is concerned about how this tragedy might help or hurt his re-election chances.  #sad





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Stop Supporting Autism Speaks

3 04 2017

Reposting this blog. It still holds true. Autism Speaks only speaks for themselves.

Pbmom's Blog

Autism Speaks Do Not Support BoycottMany people, including myself in the past, donate to Autism Speaks thinking that this corporation is the best vehicle to help support autism research and help those families who are financially crippled, who need respite desperately, who had to quit their jobs in order to care for their child, a family who may have gone through divorce because autism is TOO stressful on a marriage, etc. The physical and emotional toll is great on the entire family. Some parents have multiple children with this disease.

In about 2009 or 2010, I started paying attention to the organization that was getting all our hard-earned dollars.

John Elder Robison was the only person with autism on a board at Autism Speaks.  He resigned from the Science and Treatment boards on November 13, 2013. Read his post here. In summary he said that he could no longer be part of an organization who…

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A Tribute to Special People in My Life

24 01 2017

Today is the anniversary of the death of someone I cared about deeply. I had intended to write this last year, but then my life went into crazy mode. As time moved on, it seemed weird to write a post that wasn’t connected to a significant date. In December, his wife passed away, joining her husband in heaven. I wanted to write the post then, but it was the holidays and life was in crazy mode. Today was the day. I wanted to honor Wayne and Garnith and what they and their family have meant to me. In doing this, however, I am going to have to share some deeply personal things.

Some know the story and some do not. I was born in Brooklyn, but after 5 years, my family moved to Hillside, New Jersey. My parents divorced a few years later. My mother got pregnant and then married a second man. When she discovered he was a polygamist, she had him arrested and but was only able to convince one of the wives to come testify. He was found guilty of bigamy. As he was being carted off to prison from the courtroom he said that he was going to kill us. I don’t know why my mother decided that Omaha was the safest place to hide; it would be the first place he would have looked because her sister and her family lived there. But we pulled up stakes and moved to Omaha.

Sometime in my 5th grade year (the entry grade level in Omaha), I met someone new to our class. Her name was Kelly. She lived in the townhome complex we did. She was very quiet and shy (boy was that just a cover!) She had an older sister (one grade level up) named Kitchel.

Fifth grade class; Kelly is standing in the first row, 2nd from the left in the dark shirt.

Fifth grade class; Kelly is standing in the first row, 2nd from the left in the dark shirt.

Once friends, I got to meet Kelly’s parents, Wayne and Garnith. I remember my first impressions were they were so YOUNG and hip and cool. Garnith had gotten pregnant with Kitchel when she was 16. Wayne and Garnith got married then. Can you imagine getting married at 16 years of age? One would say the marriage was doomed…but it wasn’t. They listened to the music I like; I hated the music my mother liked.

Garnith

Garnith

I found myself staying over there more and more. Sometimes I would hang out with Kelly more, but then if Kitchel was doing something I was interested in, I might hang out with her more. There wasn’t much age difference between the two and it wasn’t ever because I was upset with one.

Their home became a refuge to escape the abuse going on in my home. They weren’t perfect. They lost their temper on occasion. Sometimes Kitchel or Kelly got grounded. They became a role model for me of people who loved their children, witnessing it up close and personal how that dynamic worked.

I was introduced to new things there. Butter — glorious butter — and that it didn’t need refrigeration (we were eating margarine at home). Refried beans. I didn’t even know what that was until I met them. I loved being able to stay over and eat dinner with them because the food was so much better. Likely I invited myself on many occasions. Garnith was the one who pierced my ears. She worked in a medical clinic. She numbed my ear lobe with ice cubes and then inserted an IV needle in my ear lobes. She was there to brush my tears away when my mother lost control at home. She listened to things that came my heart. She gave me advice when I asked for it. She became like a mother to me. More and more I wanted to stay at their house and not mine.

My father was pretty absent in my life. He was an alcoholic and child abuser. Once we moved to Omaha he couldn’t even sit down and write a letter to me. Wayne became my fatherly role model. He was a quiet one (his wife the complete opposite). He was funny. He loved football. He gave me advice as well. He became like a father to me.

Wayne

Wayne

One year they asked me if I wanted to come with them on a family road trip to Wichita. I was shocked my mother said yes. I got to experience what that was like. I met their extended family. I wanted to be adopted by them. I had hoped maybe with my absence it would make my mother’s heart grow fonder, but that never happened.

Dancing in Blue Springs, MO

Dancing in Blue Springs, MO

When they moved from the townhomes into a house (but still in the same school district) it became a bit more difficult to see them.

Meanwhile at home a storm was brewing. My sister and my mother got into a fight. She told my sister to leave. I stuck up for my sister. My mother was lying saying my sister said one thing when I had been a witness and that was not what she said. My mother told me I could go with her. At age 14, I boarded, along with my sister, a bus bound for New York (a very scary trip). My sister moved in with her friend’s family Toms River (having known them from Hillside). I went to my aunt’s house (and that is another story). My mother apologized and told me for the first time in at least a decade that she loved me. I decided to go home and give it another try.

Kelly & Kitchel in Houston

Kelly & Kitchel

Things just got worse. By July, she told me she was buying me a one-way ticket to my father (a father who was living under a bridge). She never wanted to see me again and I would never see my brother again. She told me I could only take the things with me that I had bought for myself with babysitting money. I called a friend and they picked me up. I was able to stay with them until my flight left.

My sister had me stay in the Bronx with her and the family of her college friend (where she was staying). It was for several weeks. We went up to see my father’s side of the family and my Aunt Pat and Uncle Paul said I could live with them, but I didn’t know them then. I wanted to go live with the Williams’ family. They told me if I ever needed anything to call when they moved to Missouri the same week of the first episode of being thrown out. She told me they would have a family meeting and let me know. They took a few days. The answer was yes.

The Williams extended family

The Williams extended family

What I learned later was that my father promised to send them money to help with the expense of raising me. I was having a lot of illnesses, bronchitis, and what not and I wasn’t eligible really to be on their insurance. In retrospect I am not really sure how they even got me registered to get into school because they weren’t my guardians and my father did not have the legal right to give them that. There was also a lot of fighting going on between Kelly and myself (and really I don’t even remember what that was about). Finally Garnith brought me in to her bedroom and said that they really couldn’t do this anymore. That she loved me so much. My sister was going to file child abandonment charges against my mother and she was getting me a ticket to New York so I could be placed in a foster home close to SUNY Stony Brook where my sister was a student. My heart was so sad but at least there was a plan.

In the meantime, I wrote my grandmother. I guess somehow my mother saw it, knew where I was and called their house. I will never forget when Garnith sat there and told my mother off. Someone for the first time in their life stuck up for me. Not even the teachers at my school stuck up for me when I shared with them about the abuse going on at home. It was a different time and my mother was a masterful liar.  I told Garnith how much I loved her for doing that, but I needed to be gone tomorrow. I knew my mother. My mother was going to send the police and she would technically be “harboring a runaway” (even though I wasn’t a runaway–this is the way my mother twisted things). Just to be safe, even though the plane I was going to be flying on was going to just stopover in Chicago and go on to New York, we decided to have me switch airlines and then continue on to New York. Remember I was 14 and I was going to do this alone.

I had a nice talk with Kitchel before I left (see picture below). That was the last picture I took before I left them. Wayne drove me to the airport and I enjoyed the time we spent together talking about things. Later I found out at that very moment, the police showed up on their door. Kitchel was home and invited them in and said, “She’s not here.”

Last picture I took before leaving

Last picture I took before leaving

I got stuck in Chicago because of a blizzard and I had zero money on me. I was so hungry. The flight was cancelled. My sister, who was meeting me at the other end, went home to her friend’s house. Around midnight though, they let the plane go to New York. The stewardess was more than happy to give me a second dinner when I explained my situation.

When I arrived in New York, no one was there to greet me because they all thought my flight was cancelled until the next day. Without the benefit of cell phones and having no money to make a phone call, I tried to reach my sisters. Eventually we did connect and I was informed about the visit by the police to the Williams’ home.  My sister added that the police may be looking for me and keep low. Here I was — 14 years of age — its about 3 o’clock in the morning–and I’m wanted by the police!  It wasn’t like there were any crowds to blend in.  I sat in the baggage claim area and just waited with confidence like there was nothing wrong.

I kept in touch with the Williams family through letters and phone calls. As adults, Kitchel wound up in Houston and we spent a lot of time together. I believe (I could be wrong) that they moved away, but then were moving back. Kitchel got to stay with us at the house we now own for I think it was a month until she could find the right house. She stayed in what is now Patrick’s room. I felt privileged to be able to help her as her family helped me.

Comparing pregnancy bellies at I think 16 weeks (in The Woodlands).

Comparing pregnancy bellies at I think 16 weeks (in The Woodlands).

Having her here in Houston afforded many benefits as her family would come to visit. They also had family in a town about 2 hours from me. When Garnith would introduce me, she would tell people I was her “other daughter.” Kitchel and I had children within 3 weeks of each other. Her daughter and Patrick got to be around each other for several years before they decided they wanted to go home to Missouri. That day was a sad day because I felt my sister was leaving and I did not know when I would see her again.

Kitchel and me with our husbands and babies.

Kitchel and me with our husbands and babies.

I know they knew how much they meant to me. The pain of their deaths I felt bitterly. They saved my life. They provided normalcy in a life that was so upside-down it wasn’t funny. I am certain that they helped me have a different life as an adult and not repeat the mistakes and patterns of my mother and father. Garnith’s laughter rings in my ears daily.

The picture was snapped and we knew that it likely wasn't a good picture (days before digital cameras existed).

The picture was snapped and we knew that it likely wasn’t a good picture (days before digital cameras existed).

So Garnith suggested they all do a photo where everyone was laughing.

So Garnith suggested they all do a photo where everyone was laughing.

This family risked a lot to help someone they saw desperately needed it. They made a difference. They are loved and they are missed. They are my heroes.

Forever in my heart.

Forever in my heart.