Friday, December 18, 2020

Bias and a Backwards Bicycle Brain...A must see for everyone! Part 1


I just watched this video from a man on YouTube named Dustin on "Smarter Everyday" and my life, literally, will never be the same! The video shows Dustin trying to ride a bike that has been reengineered by his buddies causing it to turn left when you turn right and visa versa. 


Despite Justin's knowledge about the bike he is unable to ride it, no matter how hard he tries! It seemed so simple but he can't do it, so he goes on a journey that proves nobody else can either, because unlearning a thing is not as easy as knowing a thing! This shocked me because I thought anyone could adapt once they had the knowledge that the direction was reversed. What he proves in the end is knowledge is NOT understanding. Our brain is hard wired with bias about how things work and reversing those thoughts and bias's can be literally impossible.  


This thought that exploded my mind! This video forced me to take a look at my bias in a whole new light,  which brought up a lot for me. I'll share that in part 2. But right now you've got to watch this and see what it brings up for you! 

Monday, December 14, 2020

Act Now: Suit Filed Against LAUSD on Behalf of Students with Special Needs

Join me in supporting this initiative for all LAUSD Special Education students, AND I am going to ask about our children who aged out and missed out! 


I am not sure if anything can be done for the thousands of special needs students like Nick who aged out of the school system during Covid. As a result Nick missed out on part of the regular school year and the extended school to the tune of nearly 6 months of instruction.  


https://files.constantcontact.com/715ec3b6001/8abd2d64-066a-492b-8c92-4257de1da915.png
SHARE YOUR SUPPORT

Newman Aaronson Vanaman LLP is one of the firms involved in Alliance for Children's Rights and the Learning Rights Law Center v LAUSD . 

The Los Angeles Times reported on the suit over the weekend, and we hope you will join us in promoting its ideals.

HOW TO HELP
Use the graphics and suggested copy to share on social media and help advocate for the 80,000 students with special needs in Los Angeles who have been ignored.
 
In addition, please email the members of the Los Angeles Unified School District Board at boardmembers@lausd.net no later than 6 pm on Monday, December 14 with the following message:

  • LAUSD must comply with its most basic duty under the law: to ensure that students who need assessments and safe in-person instruction or support in order to access their education get what they need.
  • LAUSD should act immediately to:
  • implement small-cohort in-person instruction to the maximum extent possible (up to 25% of campus capacity), consistent with cohorting guidance issued by the Los Angeles County Department of Public Health;
  • resume in-person assessments and Individualized Educational Program (IEP) services, with accommodations necessary to ensure that students’ IEPs can be executed in a distance learning environment, and
  • arrange for non-public agencies (NPAs) and non-public schools (NPSs) to provide in-person special education, related services, and assessments to LAUSD students who need it whenever LAUSD is either unable or unwilling to provide such education, services, and assessments.
Everyone at NAVLAW remains actively engaged in our work on behalf of the community we serve. Our personnel are continuing to be available to conduct virtual consultations to assist you with educational and regional center concerns during this difficult time. If you need help or wish to contact us, please visit our website at www.navlaw.net, fill out the intake form and we will schedule a meeting with one of our attorneys.
Newman Aaronson Vanaman LLP | 818-990-7722
14001 Ventura Blvd, Sherman Oaks CA 91423

Vitamin D Could Explain Why Autism Is Three Times More Common in Boys - Another Maybe for Families

A friend just shared this article with me, along with a note that read "Does this many any sense to you?"  As a mom who as been following and reading scientific and anecdotical explanations for autism for the past 19 years, my answer is "Sure, why not?"  Sadly, despite all the reports and studies over the years our kids are still not better off. We still do not have a cure, and we still live in a space where the only thing we know for sure works are intervention therapy's.  


When I began this journey with my son and believed it would get sorted in ten years or so and every new discovery excited me. I now know that is not the case. We still have no idea what causes Autism or what could cure it. My family like millions of others is still working in the dark implementing the tools available to us, praying every step of the way for progress.  So, whenever I read another scientific study, I no longer get excited and imagine a cure in coming. The years have depleted my enthusiasm, but not my hope. That is why with each new report I remain open, because until we know anything for sure, everything is "Sure why not!" 


Vitamin D Could Explain Why Autism Is Three Times More Common in Boys

Infant Baby Hand

A deficiency in vitamin D on the mother’s side could explain why autism spectrum disorder is three times more common in boys, say Queensland Brain Institute researchers.

In their latest study, Professor Darryl Eyles and Dr. Asad Ali found vitamin D deficiency during pregnancy caused an increase in testosterone in the developing brain of male rats.

Increase in testosterone in the brain 

“The biological cause of autism spectrum disorder (ASD) is unknown but we have shown that one of the many risk factors—low vitamin D in mothers—causes an increase in testosterone in the brain of the male fetuses, as well as the maternal blood and amniotic fluid,” Professor Eyles said.

“In addition to its role in calcium absorption, vitamin D is crucial to many developmental processes.

“Our research also showed that in vitamin D-deficient male fetuses, an enzyme which breaks down testosterone was silenced and could be contributing to the presence of high testosterone levels.”

Vitamin D is critical in brain development

Professor Eyles’ previous research has shown that vitamin D plays a critical role in brain development and that giving vitamin D supplements to mice during pregnancy completely prevented autism-like traits in their offspring.

Co-author Dr. Ali said that excessive exposure of the developing brain to sex hormones like testosterone was thought to be an underlying cause of ASD, but the reasons remained unclear.

“Vitamin D is involved in pathways controlling many sex hormones,” Dr. Ali said.

“When the rat mothers were fed a low vitamin D diet, it caused male fetal brains to have high levels of exposure to testosterone.”

Time to study more risk factors for ASD

Professor Eyles said the study was the first to show that a known risk factor for ASD alters testosterone in both the fetal brain and the mother’s blood — one possible contributor to why ASD is more prevalent in males.

“We have only studied one risk factor for ASD — vitamin D deficiency during development — our next step is to look at other possible risk factors, such as maternal stress and hypoxia – lack of oxygen – and see if they have the same effect,” he said.

Reference: “Developmental vitamin D deficiency increases foetal exposure to testosterone” by Asad Amanat Ali, Xiaoying Cui, Renata Aparecida Nedel Pertile, Xiang Li, Gregory Medley, Suzanne Adele Alexander, Andrew J. O. Whitehouse, John Joseph McGrath and Darryl Walter Eyles, 10 December 2020, Molecular Autism.
DOI: 10.1186/s13229-020-00399-2

This research is published in Molecular Autism and was a collaboration with The University of Western Australia’s Dr Andrew Whitehouse and funded by the National Health and Medical Research Council Australia and Queensland Centre for Mental Health Research.

Friday, December 11, 2020

Free Music Concert December 19 2020- Music for Autism

 

Britton-Rene Collins Blends Genres and Creates Social Change Through Music

Toronto-based percussionist Britton-René Collins finds passion in the art of contemporary percussion performance.

You don't want to miss this exceptional and exciting young artist!

December 19, 11am Pacific / 2pm Eastern

 

Online
(and FREE!)

Participants will receive a link to a private YouTube livestream.
Please 
RSVP
 to receive the link.
Open to all individuals with autism, and their friends and families!

RSVP today!

This concert has been generously underwritten by Arsenal Capital Partners in honor of the families served by Hopebridge.

RSVP
Questions? Email Laura@MusicForAutism.org

Tuesday, October 6, 2020

Special Needs FREE Transition Back to School Webinar - TODAY

Last Minute ALERT!

 

FREE Transition Back to School Webinar, TOMORROW, Tuesday, Oct 6th, from 3:00 pm 

to 3:30 pm. The webinar will cover a range of topics aimed to help you with your child's 

transition back to school in the time of COVID-19.

 

Spanish language webinar will be this Thursday, Oct 8th, from 3:00 pm to 3:30 pm. 


English Webinar: Tuesday, 10/6/20, 3pm-3:30pm

Registration: https://tinyurl.com/airbenglish

Spanish Webinar: Thursday, 10/8/20, 3pm-3:30pm

Registration:  https://tinyurl.com/airbspanish

Monday, October 5, 2020

Autism and Covid 19 - Why The Risk is Higher at Any Age

What a lot of people do not know is that Autism is an autoimmune illness. And the severity of an individuals autism can be determined by the severity of other autoimmune illness in the individuals immediate family.  

In our family I have a sister with MS and another sister with more complicated autoimmune illness's. When Nick was diagnosed they specifically noted my sister with MS because of the similarity in some aspects of the two illnesses.  


Nick is a healthy adult who has a compromised immune system. When he was young his respiratory and gastrointestinal issues where always present. Today they are intermittent. However,  his system is compromised and  he would not do well should he catch covid. 


This is why I track Covid information daily, including comparisons to the flu.  Yes, the flu is more common but it is no where near as deadly. Even with imperfect data collection the disparity between the two is massive. Covid is the big killer and as parents or caregivers with ASD, this is a big reminder to be diligent. 
This is worth the read.

How Do COVID-19’s Annual Deaths and Mortality Rate Compare to the Flu’s?

Mandy Armitage, MD
Mandy Armitage, MD, is a board-certified physician, medical writer, and consultant with special interest in healthcare technology and education.
August 27, 2020, 2:35PM (PT)

People in the U.S. and around the globe are intently following news reports and other data about the COVID-19 pandemic. Most of us are eager to know when there might be an end in sight, but unfortunately, Americans continue to die at an alarming rate. The death rate decreased earlier in the summer but has increased again recently. According to data collected by Johns Hopkins University, over 180,000 people have died so far in the U.S. due to COVID-19. 

Many people want to know how the mortality (or death) data for COVID-19 compare with that of a regular flu season. But it may not be an “apples to apples” comparison, as you’ll see below. 

How are COVID-19 and the flu different?

COVID-19, which stands for coronavirus disease of 2019, is an infection caused by a type of coronavirus called severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). The infection we know as “the flu” is caused by the influenza virus. Both are viral, respiratory illnesses, but they are not the same thing. 

Both coronavirus and influenza are spread by respiratory droplets and close contact. There are some other similarities between the two, including overlapping symptoms, which you can read about here. But because coronavirus and influenza are different viruses, a vaccine or treatment for one won’t have any effect on the other. In other words, the flu vaccine will not prevent you from getting COVID-19. That is one of the biggest differences between the two right now: A flu vaccine exists, whereas a COVID-19 vaccine does not. 

Other differences include length of time between infection and symptoms and how long the symptoms last. 

Coronavirus vs. flu deaths 

The first thing to know is that deaths due to COVID-19 and the flu are not counted in the same way. This means comparing the numbers isn’t as straightforward as we would like.  

Each death due to influenza in the U.S. does not have to be reported, so there is never a direct count. Each flu season, the CDC estimates deaths from the flu based on in-hospital deaths and death certificate data. They continue to update the data on their website as they collect it. Therefore, numbers from the last two flu seasons are not considered final just yet.

Conversely, each death due to COVID-19 is being recorded. The numbers you see and hear about are not estimates. So you can see how comparing mortality rates between the two isn’t exact at this point.

That said, here’s a quick look at the number of cases and deaths for the last two flu seasons (again, not final) and COVID-19 to date:

2017-2018 Flu2018-2019 FluCOVID-19
Cases45 million35 million5 million
Deaths61,00034,157180,000+

Breaking down the data

As with most topics in epidemiology, interpreting the numbers is complex. The data should be sound before any comparisons can be made. For example, health organizations are collecting data on COVID-19 differently. Should they look at only confirmed cases? Or also probable cases? How do they account for undertesting, especially in the first few months of the pandemic? Or delays in reporting?

Additionally, there are differences in how the numbers are reported. For example, this dashboard reports data collected from various state and county health departments, whereas the CDC uses a different process to confirm deaths before reporting. 

But there are other ways to evaluate the numbers. In the spring of this year, this paper found that weekly death counts of COVID-19 were much higher — on average 20 times higher — than weekly deaths from the last several seasons of the flu at its peak. 

Fortunately, weekly deaths from COVID have decreased in recent months. As you can see here, recent weekly deaths in the U.S. are not as high as they were in the spring, which is obviously good news. The decrease in the number of deaths is likely due to better protection of people over 65 years old, earlier diagnosis, and better treatment.

Flu vs. COVID-19 fatality rate 

Mortality rate measures how frequently people die in a specific population during a specific time period. One way of looking at that is with the case fatality ratio. This is the proportion of people with confirmed cases of a particular condition who die due to that condition. 

According to this dashboard, the case fatality ratio of COVID-19 in the US is 3.1%. The case fatality rate for influenza will obviously change year to year. But news reports and the World Health Organization often estimate it at around 0.1%. While the medical community is still learning about mortality from COVID-19, it does appear to be more deadly than the flu. 

There is obviously a wide range in COVID-19 case fatality numbers by country. This can be due to many things, such as how much testing is going on, the age of the population, and access to healthcare. For example, if more people are being tested, the case fatality ratio will decrease.

It’s also too early to determine anything about seasonal patterns, since this pandemic has been going on for less than a year. What we do know is that certain people are at higher risk for complications, including death, from COVID-19. This is true of the flu as well. When comparing COVID-related deaths in different geographic areas, it becomes clear that age plays a role. In addition to older age, certain medical conditions can increase people’s risk for having more severe disease and complications (including death). 

The bottom line

Although COVID-19 and influenza may look the same to some people, they are definitely not. The COVID pandemic continues to be a danger to public health and should be treated as such.

Thursday, September 17, 2020

Autism; Aging Out in a Covid Pandemic – Part I


"Aging Out" - A Mom Releases Fear Built Over a Lifetime. 

For years I have lived with fear. Fear that feels like a quiet hum; always buzzing on the fringe of my consciousness. Fear, I think every parent who has relied on educational and therapeutic support for their child's care can relate to. 

It is fear of what those of us in the developmental disabilities community calls “Aging Out”, and it’s our collective Boogie Man!

For most of our children there will be no ongoing education, no higher-level learning, no exciting jobs, careers, dating, independent travels, marriage or children. Like other kids they graduate from high-school with lots of congratulations and accolades for a job well done, but the words fall flat when they are sent home to nothing or lack luster day programs. 

Since his diagnosis, I imagined by the time he graduated from high school there would be a variety of viable educational, work and life programs for this growing population. That has not been the case. The pickings are slim and although many programs sound good and the brochures look great, underneath, today's programs are not much different than the day programs of the past.  That is why I see images of my son – who deserves to continue to grow and learn like everyone else – overweight, being driven around town in a white van, eating donuts and junk food walking with a colorful rope tied around his waist. The rope connects him to another person with developmental disabilities, who connects to another and this continues until the group forms a long line connecting them as they all walk shopping malls and assorted destinations with no real purpose. The thought of that being his life once he “aged out” is what I have been afraid of since he was diagnosed with autism 20 years ago.


But few things happen exactly as we imagine, including “Aging Out”. Thanks to Covid 19 Nick effectively aged out sooner than planned.  But it wasn’t just our household facing this drastic shift, the entire world was sent home, not just Nick.   And instead of going from graduation to no supports, last March we were thrown into a different kind of chaos eliminating school, friends and supports over a 5-month period instead of overnight.  

Instead of his school experience and supports ending the summer school concluded, Nick went from school to home, to online school (not useful for Nick) to online graduation, to online summer school, to nothing. Amidst the chaos of Covid all families were stressed with change, everyone was home, and there was nowhere for him to go because everything was closed. So instead of “Aging Out” being the biggest concern in my world, it was just one of them.


 I was not alone is sudden change, which in a weird way seemed to soften the impact of the moment and what was to come. I was just like every parent in the country struggling to figure out what to do with children who were suddenly home all day!   I was like all the other parents struggling to be their kid’s teacher, coach and playmate while trying to work myself in a Covid-19 world.  I don’t mean to be a jerk, but there was something oddly comforting about knowing I was not alone, because in a way all of our kids had just “Aged Out”, even if only temporarily. Ironic that families around the world were experiencing the pain and panic I knew was coming, but they never expected.


I however, did have an advantage over most parents because this is not my first fear rodeo! This phase mirror’s the early stages when Nick was diagnosed with Autism. While other 2- and 3-year old’s were going to preschool, I was sent home, with my nonverbal 2-year-old kiddo in tow, to figure out our life on our own. Armed only with the knowledge that autism was a lifelong developmental disability with no known cause or cure that would require lifelong care. I remember feeling like I was staring into the abyss with no idea what to do, where to go, what would come next or how we would handle it.  It’s been a long journey from diagnosis to aging out. Yes, I am fatigued, but I am so grateful to have made it here. As I stare down the tunnel of what’s next, I am hoping the bright light, is a flashlight to guide me and it is not a train.

Parents of most neurotypical children anticipate a life after high school graduation for their children as a stepping stone into the future. A future, commencement speeches describe as filled with purpose, hope and optimism. That is not the reality of most families raising children with autism and other developmental disabilities. We don’t experience graduation as the start of a new chapter filled with exciting possibilities, purpose, college or work, dating, marriage and children. Instead the landscape for life after high school for our children looks like the end of their best times, a downhill slope offering little or no hope for the future.


Why? Because the world does not value investing in their ongoing education or building a future for our children.  I took Nick off the diploma track to delay this moment as long as I could. Leaving the diploma track meant he could stay in school until he turned 22. Staying in school provided an opportunity for him to continue to learn, while staying engaged in a safe regular routine with his friends for as long as possible. I took him off the diploma track while he was in middle school specifically to postpone the inevitable; the day school would end and with it  options for an engaging fulfilling life. 

Since his diagnosis, I imagined by the time he graduated from high school there would be a variety of viable educational, work and life programs for this growing population. That has not been the case. The pickings are slim and although many programs sound good and the brochures look great, underneath today's programs are not much different than the day programs of the past.  That is why I see images of my son – who deserves to continue to grow and learn like everyone else – overweight, being driven around town in a white van, eating donuts and junk food walking with a colorful rope tied around his waist. The rope connects him to another person with developmental disabilities, who connects to another and this continues until the group forms a long line connecting them as they all walk shopping malls and assorted destinations with no real purpose. The thought of that being his life once he “aged out” is what I have been afraid of since he was diagnosed with autism 20 years ago.

But few things happen exactly as we imagine, including “Aging Out”. Thanks to Covid 19 Nick effectively aged out sooner than planned.  But it wasn’t just our household facing this drastic shift, the entire world was sent home, not just Nick.   And instead of going from graduation to no supports, last March we were thrown into a different kind of chaos eliminating school, friends and supports over a 5-month period instead of overnight.  Instead of his school experience and supports ending the summer school concluded, Nick went from school to home, to online school (not useful for Nick) to online graduation, to online summer school, to nothing. Amidst the chaos of Covid all families were stressed with change, everyone was home, and there was nowhere for him to go because everything was closed. So instead of “Aging Out” being the biggest concern in my world, it was just one of them.

 I was not alone is sudden change, which in a weird way seemed to soften the impact of the moment and what was to come. I was just like every parent in the country struggling to figure out what to do with children who were suddenly home all day!   I was like all the other parents struggling to be their kid’s teacher, coach and playmate while trying to work myself in a Covid-19 world.  I don’t mean to be a jerk, but there was something oddly comforting about knowing I was not alone, because in a way all of our kids had just “Aged Out”, even if only temporarily. Ironic that families around the world were experiencing the pain and panic I knew was coming, but they never expected. 

I however, did have an advantage over those parents who had not been caring for their children 24/7, because this was not my first fear rodeo! I had experience providing all of his education at home, and I since my son didn't have friends, or playdates I was used to providing his social life. Who, know that would be an upside! But it was because this phase of our journey mirror’s the early stages when Nick was diagnosed with Autism. When I was sent home armed only with the knowledge that autism was a lifelong developmental disability with no known cause or cure, that would require lifelong careWhile other 2- and 3-year old’s were going to preschool, I was home with my nonverbal 2-year-old kiddo trying to figure out life on our own and learning how to be everything to my child. 

I remember feeling like I was staring into the abyss with no idea what to do, where to go, what would come next or how we would handle it.  
It’s been a long journey from diagnosis to aging out. Sometimes moving unbelievably fast, and other times painfully slow.  But we made it. We are staring down the tunnel of what’s next. Praying and hoping the bright light at the end, is a flashlight to guide us and it is not a train.
 
 



 


Thursday, September 10, 2020

Urgent Alert: Significant and increasing delays in the delivery of Prescription Medication Shipments

 

ALERT: If you get essential medication mailed from a pharmacy, please consider  having your prescriptions transferred to a physical pharmacy to ensure getting them on time! 


We have all heard about the changes to the post office and how they would affect the election in November. I had friends who work at the postal office tell me how the large sorting machines had been removed, and how the mail boxes pulled from the streets were piled up with our mail still in them!  Yet, because "Politics" are involved in the narrative I didn't want to automatically fall into the world of political blame when a check I mailed to my sister 3 weeks ago - who lives 20 minutes away from me - still has not arrived. Albeit frustrating, I decided to treat it as an isolated incident that would probably not occur again, since missing mail didn't just begin with Trumps appointment of the latest U.S. Postmaster General. 

Despite my desire to keep an open mind and not rush to judgement, the realities of the postal service dismantling are real, and sadly it's clear to me that politics have once again taken priority over people. Slow or missing mail is not just inconvenient but dangerous and potentially deadly as the missing and delayed mail now includes my son's vital prescription medications. In his case some of the medications must be administered on time to avoid immediate negative consequences. Something all families who have children on seizure and ASD drugs can attest to. 

 Anyone who has used mail pharmacy services knows, the process of moving a prescription from mail order to a physical pharmacy is not quick. Prescription transfers typically take several calls to arrange, lot's of time on hold and the transfer is not immediate, further delaying getting medications. This process would be difficult enough in a pre-covid world, but it presents an additional layer of complications forcing those with compromised immune systems to visit a pharmacy in person, risking exposure to Covid or other illnesses.  I keep a back up of all of Nick's medications for emergencies, so the delay did not put him in danger this time. That said, keeping additional medications on hand is not easy because his medications are doled out in 30 day increments and request for additional medication for emergencies are usually ignored. No doubt a cost saving measure implemented by the insurance companies.  I am strong, I do not have a compromised immune system so I am able to go into the pharmacy and get Nicks medications. I know this is not the case for everyone, which makes this a very dangerous situation for many Americans. 

 Today I decided to jump on the internet and see if this problem was isolated; to me, my area, my mail pharmacy and it not! This is happening across the country and there is not reason to believe it will stop soon. This is why I am encouraging all families to avoid putting themselves are risk and begin the process now of moving your medication to a physical pharmacy where you can pick them us.  

Here is an article I found that supports my experience. 

US pharmacies have seen “significant and increasing” delays in the delivery of prescription drugs through the US Postal Service under the leadership of Postmaster General Louis DeJoy, according to a new report from Senate Democrats. Pharmacies questioned for the report rely heavily on the USPS. The investigation was conducted in light of changes DeJoy made this summer that caused widespread delays across the country, though the Postal Service has blamed service disruptions on the coronavirus pandemic. The USPS chief is now facing more scrutiny after the House Oversight Committee announced it's launching an investigation into reports that DeJoy, a Trump donor, reimbursed employees for donating to GOP candidates.