New York Rabbi Begs For President Trump To Help Jewish Community
Masquerading Behind Fear

When Autism Becomes A Fatal Condition

WeepMany years ago, we wrote about Kent State University Professor Trudy Steuernagle, who was beaten to death by her son, Sky Walker. She knew that one day, his severe autism would kill her.  She did not blame him. She left a letter behind saying as much.  Kent State professor Trudy Steuernagel's fierce protection of her autistic son, Sky Walker, costs her life: Sheltering Sky.

Last month, the autism community lost Feda Almaliti and her beloved son Mu in a fire. Mu did not beat his mother to death. He refused to leave their burning home. She chose to remain with him, even to their deaths. 

Autism, like so many other critical issues this abysmal election season, has been cast aside for COVID .  Already tough times for families are far worse with closures, lack of proper school, no day programming, services and care staff unavailable and above it all - a radical change in routine which is toxic for our loved ones. 

We parents whose children remain at home are really feeling the pinch of  COVID's social isolation. There are countless families facing violent behavior, 24/7 caregiver exhaustion, financial trauma. I feel fortunate to have day programming opened my older daughters. That said, I have at least one of my daughters home with me at all times.  This means every trip to a store requires bringing her with me.  I've cancelled appointments. There is no downtime until bedtime. That sound you hear at 9:15pm is probably me breathing a sigh of relief! And I'm lucky all three of my daughters sleep. Many families do not have the luxury. Work is pecked out while surrounded by noise, music, stimming, hands grabbing me to do this or that, demands.   I have been telling friends this is like going back to the toddler years - with a few precious hours of preschool (day program) a week and a little one always in tow. I'm not complaining (much) - many have a far tougher situation and we have a darn good routine here.  I'm proud of my daughters.

Trudy and Feda's trauma is seared into my heart and soul.   Below is a post from David Royko that rings true. A call to action. A call to KEEP GOING because autism should not be fatal - to any of us.

Juggling Autism Blog: Feda Almaliti and Mu, A Severe Autism Nightmare

Father to Ben and Jake; Husband to Karen; Psychologist (so you can call me doctor if you want to though I probably won’t realize you mean me); Director of Chicago court system’s divorce mediation services; Writer/Author — mainly autism, music, children of divorce, Mom and Dad (Carol and Mike Royko); Blogger (Juggling Autism; Huffington Post); Resident of Deerfield, Illinois, and Beachwood, Ohio; Former: Drummer, Circulation Truck Helper, Radio Host, Workshop Leader, Uber driver, WFMT Production Assistant; Group Therapist; Freight Train hopper.

“Autism was becoming a fatal condition for me.”

Karen said that a dozen years ago when Ben and we were the subjects of an episode of the radio show, This American Life. It was about Ben moving out of the house into a residential placement. And she wasn’t speaking figuratively.

Severe autism is a living hell for the afflicted and those who love them. Karen had suffered a dozen years of severe sleep deprivation. Dangerous incidents were becoming more frequent with her ability to control a hulking, six-foot 12 year old decreasing by the day.

Last week, it became a fatal condition for Feda Almaliti. She was a larger-than-life, 43 year old powerhouse in the autism world, with a son suffering from severe autism. A true “Warrior Mom,” her accomplishments included co-founding the National Council on Severe Autism, and helping to reform California’s insurance laws to cover autism. In the world of autism, her brains, her sense of humor, and her personality were making her a living legend. And autism ended her life, and that of her beloved son, Mu (Muhammed).

The news reports all blame the fire for their deaths. No. It was severe autism that killed them....



Read more at Juggling Autism: The Chronicles of Ben Royko Severe Autism in Real Time

In the middle of the night, Feda’s sister Salah was awakened by her daughter screaming that she couldn’t breathe. Their house was ablaze.

After they had gotten out, Feda realized Mu was still inside and ran back in. As Salah screamed for them, she heard her sister trying to get Mu out.

In a devastating Facebook post, Salah describes hearing “…the popping of glass and the faint noises of Mu crying, ‘No,No,No’ in response to Feda pleading with him,” using his nickname, Hammoudeh. Too big for Feda to carry, she yelled that they needed to “get out now!”

When the fire officials found their bodies, Feda was holding Mu.

Autism had become a fatal condition for them.

Comments

Shelley Tzorfas

In the best of circumstances it was written that the median age for people with Autism to live to is around age 35, do you get it yet?

Barry Stern

At a symposium I attended as a college junior over 50 years ago, “The Role of the Whole Person in a Divided World,” famous anthropologist Margaret Mead opined that the defining markers of civilized society is how society treats the most vulnerable – the sick, elderly and very young – and how the police treat everybody. How our political class has been treating families trying to care for their adults and children with autism is a bi-partisan national embarrassment. The raging epidemic of autism among children, from 1 in 10,000 in 1985 to 1 in 35 today threatens our national security far more than the Covid-19 virus, yet no one has declared this a national emergency by getting to the root causes and providing financial relief to families paying the price of governmental negligence.

The next Congress could begin to address this incredible wrong by calling CDC whistleblower and senior scientist Dr. William Thompson to testify about how he and his team hid and destroyed data that proved that the MMR vaccine caused autism among a significant percentage of boys in Georgia, especially black boys. Amazing that no political party or presidential candidate has included such an investigation on their agenda for the next four years. Big Pharma has bought them off. Pharma is scared to death of losing billions and being held accountable for their lies and cover-ups. Meantime, we Americans are just beginning to realize that despite our country’s enormous and increasing investment in health care, we remain one of the least healthy on the planet. Our profligate use of insufficiently tested vaccines and drugs along with poor diet and insufficient exercise are no doubt among the primary reasons for not getting much for our health care dollars.

Emmaphiladelphia

"FOR DECADES … those very same public health EXPERTS have observed with CALLOUS DISREGARD the dramatic .. undeniable .. unexplained .. increase in autism which has risen from 1 in 10,000 to 1 in 35 today …"

They know the cause. Time, money, and energy is spent covering it up. They don't want to go to jail. Payouts to the injured would bankrupt the country. It continues because, perhaps, this is what they intended in the first place, yes?

Putting that aside, what would be your ideal remedy for your injured child's current situation? Anyone?

This battle has several fronts:
Prevent ongoing /future harm by making vaccines informed consent only.
Prevent censorship of vital scientific evidence of vaccine safety failures.
Research possible treatments for improvement of vaccine injury/autism outcomes.
Outside help/funding for the severely autistic and their families- especially for long term living accommodations should the parents (caretaker) die.
Proper PR for the citizens so this PANDEMIC does not continue to be covered up.

Bob Moffit

With what as become expected of our sick .. morally/ethically/ scientific bankrupt public health bureaucracies .. it wouldn't surprise me to learn somewhere in the tragic aftermath of what happened to this courageous WARRIOR MOM and her beloved son … the medical or public health professionals declare the CAUSE of death as COVID.

One cannot help but wonder .. question … why COVID was declared a worldwide PANDEMIC based upon what we have sense learned was a very poorly "model" predicting MILLIONS WOULD DIE .. while at the very same time … FOR DECADES … those very same public health EXPERTS have observed with CALLOUS DISREGARD the dramatic .. undeniable .. unexplained .. increase in autism which has risen from 1 in 10,000 to 1 in 35 today …

We hear constantly the most vulnerable .. older seniors with co-existing health problems must be protected .. the logical thing to do … yet … with autism any effort to identify the most vulnerable children pre-disposed to adverse serious reactions to VACCINES … that at the very least may be what HAS AND CONTINUES TO CAUSE AUTISM REMAINS … DELIBERATEKT UNRESOLVED …

TESTING, TESTING, TESTING … WITH EACH POSITIVE TEST INCREASING THE HYSTERIA OF COVID EVEN AS ACTUAL DEATHS OF COVID HAVE DRAMATICALLY DECREASED WITH NEW DRUGS AND TREATMENTS … MAKING COVID FAR LESS THE DANGEROUS BETWEEN AUTISM AND COVID. WHY IS IT THAT "BETTER RECOGNITION" AND "AWARENESS" ONLY PERTIANS TO AUTISM AND NOT COVID???

Just my humble opinion .. after all .. I am not an expert like Fauci and Brix

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