The Uncertainties Ahead

Unless you live under a rock, or are on tribal lands, the media is laden with constant breaking news of the COVID-19 (Coronavirus) Outbreak. The outbreak started in the Wuhan Provence of China and has spread around the globe attacking most of the continents. For the past week, the states has been in fear with federal, state, tribal and local jurisdictions having citizens testing positive or presumptive positive for the virus.

There is no cure nor vaccine, only treatment that requires one to have limited contact and requiring self-isolation from others, something that hasn’t been commenced since WWII. In the past few days, while trying to not get too immersed in overload, as it is not healthy and trying to remain calm. It is increasingly difficult to do so as cases of the virus got closer and closer to the area. We are now seeing airplanes being screened, cruise ships with cases, among others.

This week has been a difficult week with the start of Daylight Savings Time, a week where the full moon is abound and closing the workweek with Friday the 13th. With that as surrounding states in addition to Pennsylvania made gradual closures, the ultimate decision was made to close all schools and libraries, among other commonwealth sites. My mother works at the local state transportation department and was directed by her superiors to use social distancing upon return.

My employer is supported by the county government and the governing body set a declaration Friday. I received a phone call from my supervisor to not return to work until further notice as I am classified non-essential and have no workload requiring deadlines. However, my job support program is open as of now, although they have cancelled all outside and public events until further notice, although I have a feeling before long we as will be my mom will be sent home.

As an individual on the spectrum, I have experienced burnout the last few days from the local stores I visited. I have seen bare shelves and checkout lines extended in each aisle from the front of the back of a grocery store with only two cashiers (and one elected to work past his shift.) My mother and I stood in that line in that store for 35 minutes and the local super center had more checkouts open than the holidays. If you or your child has struggles being in crowds, I would suggest if possible an online service. Wal-Mart Stores are closed at night in order to restock and sanitize, although we got a up front parking space. I did snap photographs of the shelves of where the bread and potatoes are to be. The only breads were Gluten Free (My Dad is a Celiac, woo hoo!) organic and flavored. I have never seen so many TP references or Beavis and Butt-Head clips this weekend than I did in 25 years.

Bread Aisle
Potato Bins

Social isolation and distancing is a difficult situation for those of the special needs community. Today, I came across an article in USA Today where an aide in a public school for special needs in Chicago contracted the virus, therefore requiring the 200 students and staff of the school to self-quarantine. A local legislator is delivering supplies to those households. Nonetheless, this is very strenuous on the caregivers, as some individuals have compromising health issues, not to mention the behavioral challenges they face. The article noted that an individual was becoming physically aggressive as a result of being contained in their home. One parent stated “You can’t Neflix all day.” Special needs students face a challenge of being educated remotely as well

Tonight I am thankful as I am writing this blog post that I have the ability to regulate my emotions. Last week, at my job support program, as I was reading the daily announcements and staff announced certain events would be cancelled, another individual slammed his hands down and screamed at me to “shut up.” Thankfuilly, staff redirected quickly without incident but It did shake me up bit because I was looking at a less mature version of me. Over the last month and a half I have had several changes including my work and living situation that have been rather difficult on not only myself, but my parents as well, since I am residing with them.

Today, when I received that phone call to not report to work, I was frustrated. However, when I reached out to one of my supports, they reminded me of how these events were God’s plan and that they felt that this was a way of God telling me that I needed more time off. There is a possibility that I will be paid for missed work, but as this national pandemic is evolving, I am uncertain as of yet if that will occur.

Yes, autistics thrive off of routines, and I know several that do. But growing up I have been continually been taught that the need for flexibility needs to be brought in as necessary. Autists have issues with this and the times ahead are uncertain, however these are a few tips from several sources, this one I adapted from today’s post on Autism Apples Kool Aid

  1. Always tell the truth! You aren’t protecting your child by lying – especially when they are hearing things from other people. You don’t need to share a lot of details – just say that you are staying home for a while to keep from getting sick. Use social stories if you need to.
  2. Be ready for questions and answer them simply. Tell them it’s like a bad cold and that you will be right there with them if they happen to get sick.
  3. Make the change in routine seem exciting! More time for favorite movies! Time to make crafts and read books. Time to play outside. More time for iPads, Legos and model trains. More time for Sesame Street and color by numbers. I know the change in routine will be tough if you need to quarantine – just take a deep breath and know everyone else is in the same boat.
  4. Explain why they have to wash their hands so often – and make a game out of washing them. Let them make bubbles and squish them. Sing goofy songs to make sure they are washing their hands long enough. (I made Casey and Rob use hand sanitizer after we left stores yesterday and to wash their hands as soon as they got home. They thought I was nuts.  )
  5. Assure them that you have taken precautions and have enough food. (I’ve heard some crazy stories – I’m sure my kids have, too.) Lay those fears to rest. Share everything you have done to keep them safe. Again, even if your child can’t talk, they are hearing and they may be scared. Talk to them!
  6. Don’t let your kids see your stress. Easier said than done, I know, but if they see you are scared, it will scare them more.

In closing, take time to enjoy each other. You may struggle, but thank goodness for technological advancements! Embrace this time to show love for one another and count your blessings!

We will overcome!

The Changing of the Clock

As a child, I never struggled with Daylight Savings time, because I either prepared for it by my family, or I just never noticed it. Nonetheless, in recent years, it has been harder and harder to overcome the change, yet I look forward to the time change in the spring, as it brings forward a sense of the mood eventually getting better.

For years growing up the Daylight Savings time began on the First Weekend in April and ended the last weekend in April. This occured during my youth, and it occuring on the weekend, hardly had any issue that I can easily recall, other than being up late.

By the Energy Policy Act of 2005, daylight saving time (DST) was extended in the United States beginning in 2007. As from that year, DST begins on the second Sunday of March and ends on the first Sunday of November. In years when April 1 falls on Monday through Wednesday, these changes result in a DST period that is five weeks longer; in all other years the DST period is instead four weeks longer.

This has been a struggle, as has been many in the autism community. Growing up, I have had the pleasure of visiting the Amish community in the adjoining county, and they elect not to observe daylight savings time, this confused me, but being mostly in our own car, and this was a house-by-house basis, it didnt seem as hard. One trip I made with my dad and his friend to a horse sale during Hurricane Ivan in 2004 did confuse me as it was in the State of Indiana, and at that time not all counties did not observe daylight savings time, and the county we were in did not because of the Amish population. I did not sleep well, and it was a misreable trip as a result. The following year the Indiana legisalture absolved this practice, and now the States of Hawaii and some parts of Arizona are the remaining two that follow this practice.

I have heard of legislation of Pennsylvania and other adjoining states such as Ohio and others attempting to abolish this practice. I would be happy if this were to occur. I personally feel that I suffer greatly from Seasonal Affective Disorder (SAD) due to the simple fact that I struggle emotionally during the standard months of missing daylight and the time changes. In the past few weeks I have been elated to be heading out to work in the daylight to not only have the clocks changed and yet again starting my day in darkness.

As I do look forward to the time changes as our local library has a book sale and a soup/chili walk. I do struggle after the change as I lack sleep in the fall and get too much in the spring. In the course of the past 24 hours, I have slept 13 of them, and now I do not feel like sleeping but I will do give it a college try. The thought processes running through my head make it difficult, but with medication, I am able to catch some sleep but oftentimes not enough.

All in all, I appreciate that extra hour in the fall, but the SAD symptoms do kill me so because I cant get out as much as I like during the week. By the time I get home from work I often in the colder months have less than a few hours to do something out of doors, or go somewhere on my own. The weather in winter, while better isnt all that warm although the weather is looking to be better with the appearance of birds this week.

I do like the spring change because of the things restarting, the ability to go walking, longer days, the tourist season of the mountains, and so forth. I just don’t like missing out by continious sleeping for hours on end to catch up.

The Caffeine Detox

I attempted to forego sodas several times in the past few years, I wrote a post on this a while back. But this most recent one is seeming to stick because I am thinking about it differently.

Growing up as a child due to the onset of my autism and ADHD, I was always told to avoid caffeine. I always did so growing up through my adolescent years until I left for my first stay away from home at the Hiram G. Andrews Center in Johnstown. There, I was given ample access to not only vending machines, but an onsite canteen where there was a plethora of caffeinated beverages. This was the beginning of my “I didn’t give a care” phase.

After graduation, when I moved home with my parents until I moved out in 2018, I continued to battle with my parents over my soda consumption. When I moved out on my own in August 2018, I consumed sometimes to the equivalent of four liters of soda a day, without thinking. Throughout consumption, I became increasingly agitated and the addiction grew. I remember one night with my parents I screamed very loud for a trip to the store, just like a little brat.

Since moving on my own, I made several attempts to break the habit. One I distinctly remember was when I went cold turkey, I laid in my bed for several days and had a migraine. So, I was off the wagon.  In February 2020, I decided to give it up no matter what it took. I spent numerous hours on research and found a gradual detox was the best method. For several years before I started, I would never put ice in a cup. So, I started with one large fountain drink a day and filled it ¾ full of ice and the remainder with a caffeinated soda. The remainder of the day I would refill with water until the Ice dissolved. If I craved a soda, it would be caffeinated, however I would attempt to refrain from diet product as it has addictive sweeteners in it. Now I can’t stand the taste of many diet sodas. I will expend the calories if I can have a caffeinated soda, but only I have them to expend in my food plan.

Mentally, I am doing much better than I previously was. My mood has improved, and I am losing weight gradually, which is the preferred method for my weight loss journey. The cup size has decreased each week, and the caffeinated beverages I rarely crave, if at all. I have replaced most of the soda drinking with either ice or carbonated water. I just want to close with the simple fact is that I never thought I would start doing this or lasting this long which truthfully, I don’t know why I didn’t start this sooner. I am feeling much better than I did in the past, although the cravings come occasionally, I dwell them out the best way that I can.

Yang And Sanders Use Maternal Mortality Stats To Talk About Race

In an exchange about racial inequality at December’s Democratic presidential primary debate, businessman Andrew Yang  highlighted jaw-droppingly different health outcomes between black and white women, and Vermont Sen. Bernie Sanders picked up that thread.

“If you’re a black woman, you’re 320% more likely to die from complications in childbirth,” Yang said in a discussion about racial disparities between black and white Americans.

Sanders returned moments later, arguing, “Black women die three times at higher rates than white women.”

Those figures, which are roughly equivalent, would speak to glaring inequities in the health care system. So we decided to dig in.

We reached out to both the Yang and Sanders campaigns for comment.

The Yang campaign referred us to data from a May 2019 report on maternal mortality disparities from the Centers for Disease Control and Prevention.

The Context, And The Data

Based on the context of the debate, we also interpreted Sanders as discussing maternal mortality gaps between black and white women — an issue that public health researchers say is a major concern, and one that’s garnered sizable attention on Capitol Hill.

The best data comes from the CDC report Yang’s team cited. The May report outlines maternal mortality disparities, using data from 2011 to 2015 and select data from 2013 to 2017. Per the CDC, 700 women in the United States were reported to die from pregnancy-related complications each year.

Non-Hispanic black women were 3.3 times as likely as non-Hispanic white women to die from complications in childbirth — data that roughly tracks with both Yang and Sanders’ stat.

So, while their phrasing may have been inelegant, the point is correct.

What’s At Stake

Experts say most of these deaths are preventable.

One issue: Hospitals that predominantly serve black women are often worse-performing than those that serve mostly white women — and that, researchers say, contributes to the gap.

Another issue comes from the American College of Obstetricians and Gynecologists. It released a comprehensive guide in May on preventing maternal mortality, which provided data showing that cardiovascular disease is the leading cause of pregnancy-related death, and it disproportionately affects women of color.

“Most of these deaths are preventable, but we are missing opportunities to identify risk factors prior to pregnancy and there are often delays in recognizing symptoms during pregnancy and postpartum, particularly for black women,” said ACOG former president Dr. Lisa Hollier in a press release about the guide.

Black women’s risk of dying from cardiovascular disease while pregnant is 3.4 times higher than that of white women. The American College of Obstetricians and Gynecologists said this disparity is in part due to racial bias and overt racism in the medical system, with black women’s cardiovascular disease risk not being addressed before they become pregnant.

Dr. Neel Shah, an assistant professor of obstetrics, gynecology and reproductive biology at Harvard Medical School, said that both candidates reported the CDC statistics accurately. He also reiterated that this disparity persists irrespective of education or income and stems from medical providers’ implicit bias.

“When black women express concerning symptoms, particularly pain, the health system is slower to respond,” Shah wrote via email. “The reasons are surprising but also apparent to nearly everyone who works in health care. Clinicians are trained to profile people by race — nearly every exam question in medical school tells you the race of the patient and reinforces race-based associations.”

Our Ruling

Yang said black women are 320% more likely to die from complications in childbirth, as part of his explanation of disparities between black and white Americans.

The point tracks with non-partisan expert research. We rate it True.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Government-Funded Day Care Helps Keep Seniors Out Of Nursing Homes And Hospitals

SAN MARCOS, Calif. — Two mornings a week, a van arrives at the Escondido, Calif., home of Mario Perez and takes him to a new senior center in this northern San Diego County town, where he eats a hot lunch, plays cards and gets physical therapy to help restore the balance he lost after breaking both legs in a fall.

If he wants, he can shower, get his hair cut or have his teeth cleaned. Those twice-weekly visits are the highlights of the week for Perez, a 65-year-old retired mechanic who has diabetes and is legally blind.

“The people here are very human, very nice,” he said. “I’m gonna’ ask for three days a week.”

The nonprofit Gary and Mary West PACE center, which opened in September, is California’s newest addition to a system of care for frail and infirm seniors known as the Program of All-Inclusive Care for the Elderly.

The services provided by PACE, a national program primarily funded by Medicaid and Medicare, are intended to keep people 55 and older who need nursing home levels of care at home as long as possible and out of the hospital.

The program is more important than ever as baby boomers age, its proponents say.

“The rapidly growing senior population in California and across the country will put enormous strain on our current fragmented, and often inefficient, health care delivery system,” said Tim Lash, president of Gary and Mary West PACE. California officials consider PACE an integral part of the state’s strategy to upgrade care for aging residents.

The National PACE Association said data it collected for 2019 shows seniors enrolled in PACE cost states 13% less on average than the cost of caring for them through other Medicaid-funded services, including nursing homes.

Perez, like 90% of PACE enrollees nationwide, is a recipient of both Medicaid and Medicare. He’s part of a population that typically has low income and multiple chronic conditions.

PACE participants who do not receive government medical benefits can pay out of their own pockets. At Gary and Mary West, the tab ranges from $7,000 to $10,000 a month, depending on the level of care.

Nationally, 50,000 enrollees participate in PACE programs at over 260 centers in 31 states. In California, PACE serves nearly 9,000 vulnerable seniors at 47 locations.

PACE programs nationally offer all services covered by Medicare and Medicaid, and staff members include nurses, primary care doctors, social workers, dietitians, drivers and personal care attendants, as well as physical, occupational and recreational therapists. PACE enrollees commonly have conditions such as vascular disease, diabetes, congestive heart failure, depression and bipolar disorder.

About two-thirds of PACE participants have some degree of cognitive impairment. The Gary and Mary West center is no exception, which is why it has alarms on all the doors. If participants become agitated, they are led to the “tranquility room,” a softly lit space with an ocean soundtrack and a recliner.

On weekdays, participants can arrive at the center as early as 8 a.m. and stay until 4:30 p.m. A PACE driver provides transportation to and from the center, as well as to appointments with outside specialists.

The center goes a step further than most other PACE programs: It offers dental care. Staff dentist Karen Becerra said some of her patients have cried for joy when they learned they were going to have their teeth fixed or replaced.

“These are folks who have terrible teeth,” Becerra said. “And if they have painful mouths, they have poor nutrition.”

Perez is missing teeth, but he was all smiles when he talked about his upcoming dental appointment. “They’re going to put new ones in,” he said.

The center opened with money donated by San Diego billionaires Gary and Mary West, telemarketing and telecommunications entrepreneurs. They’ve donated about $11 million to establish PACE centers around the country.

The center in San Marcos is spacious and cheery, with sofas and chairs scattered about and plenty of natural light. It’s meant to feel “like a friendly inviting living room,” said Dr. Ross Colt, a retired Army colonel who joined Gary and Mary West PACE a year ago as the primary care physician on staff.

Enrollees can repair to a patio to get fresh air or tend herbs in planter boxes. And they can participate in activities such as bingo, coloring and Trivial Pursuit, led by a recreational therapist.

Just down the hall from the main lounge are patient exam rooms decorated with photographic murals of sunsets and seascapes.

Center participants can get physical and occupational therapy in a rehabilitation gym, and the facility has a spa where they can shower or get their hair done.

The executive director, Renata Smith, recalled a woman whose husband had been bathing her with a garden hose before she joined PACE. “We’re talking about basic human dignity here,” Smith said. “The spa makes participants feel good about themselves.”

PACE programs also send personal health care aides to the homes of participants.

Twice a week, an aide named Sylvia Muro picks up Perez at his home and takes him out to shop for groceries. Sometimes they stop at McDonald’s for pancakes and sausage.

Colt said participants come to him for checkups about once a month, but he can see anyone with a medical problem on a moment’s notice.

Unlike doctors in private practices, “I have the luxury of seeing them for an hour if I need to. And I can bring them back tomorrow if I need to,” he said.

Such access can save a diabetes patient from missing an insulin injection and avoid a costly hospital admission.

“That’s what the benefit of this model is,” Colt said. “The patient doesn’t want to go stay in the hospital, the family doesn’t want them to, and society doesn’t want them to.”

Smith, the center’s executive director, noted another important benefit: “the comfort of social interaction and something to wake up to every day.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

Why Medicine is Important.

I have been taking some sort of medication to cure the symptoms of what would be autism since I was seven. At 34, I now realize the importance of having a good cocktail and being regular with it.

As a child, you do as you are told by your parents or for me there would be serious consequences. Taking my medicine was no different as in my childhood I was on a multitude of medications. However, I have been on the medication regimen I am on today, in part for twenty years now. And for 19 of those years I was pretty regimented unitl a little over a year ago.

I had lived with my parents for a little over 33 years and as such “did as I was told” and did such. Once I moved out, I began to consider as to whether or not I needed medicine.

So I started experimenting mainly because I had to know was the medicine important or a waste as a part of me adulting.

I spent many sleepless nights wondering that, I was in denial. My parents knew, those close to me knew, but they did’nt tell me.

I would lash out a people for no apparent reason, I would be nasty to people, My manias would appear off and on again and again but yet I was in denial.

I thinking I had an over abundance of meds and no clear mind decided to take them to a drop off box at the local police station. Weeks later I told my mom this and she was very disgusted to the point she hung up the phone and would talk to me for a few hours.

Nonetheless, I continued down the slippery slope for a few months, the symptoms became more and more appearant even to my therapist who came to the conclusion that this wasnt working, and on September 12 this year, I began a normal regimen – sort of.

I knew I was getting bad because I stay up all night, go to work and come home and sleep for hours and do it all over again. My superiors at work were worried about my mental health as during that relapse they said I was a little animated and asked if everything was ok. I denied it.

I became manic, and as such I was hypersexual, the mania symptom that no one wants to talk about. When I was visiting my dad when he was in the hospital I called the Hallway ad male organ and other not so nice names. Now looking back as I was trying to find my individuality, I thought I couldn’t have medicine to be me. I have learned that adequate balance is everything.

I now realize that it was stupid as working for a mental health advovacy organization that it wasnt the right thing to do or example to lead. But the trust kept coming back.

The day following that realization, a support at the place I recieve job coaching came to me and noticed the change. I told her I was working on it. Eight days later we went on a outing where I was photo bombed and she said that you couldn’t wipe that smile off my face.

A little over a month after that, I changed my PCP or family doctor and was reecucated about my physical meds and as such I have had everything back in sync for some time now and feel amazing.

It just goes to show you how importatant medicine is and what it can do to keep you well!