Who wants to live forever?

“I’ll take ‘Things Autism Parents Say’, for $500 Alex.”
“The phrase often uttered based on the belief that no one will care for their children after they die.”
“What is, I have to outlive my child?”

“I’ll take ‘Things Autism Parents Say’, for $400 Alex.”
“Gospel preached on the implication that group homes = failure, abuse and neglect.”
“What is, “I would NEVER place my child into a group home?”

(I want to say right here, that while I am about to talk about aggressive, severe kids –this applies to any of our kids who cannot care for themselves. If you are a healthy, non stressed parent with lots of support right now, you’re likely not going to want to put your kid into a home yet, but you still need to do your homework and make sure your wishes are in a will.)

Mostly because of that cultural belief in my community, that group homes = abuse and failure as a parent, I went YEARS past the point where I should have entertained the ideas that I just couldn’t do it by myself anymore, that he might be better off, and that I was asking too much of his younger brother with my ‘Group Home Never!’ motto.

We need to start being honest with ourselves so that we can be honest with the parents who are going through the worst of this. Maybe you’ve put yourself in a bubble and don’t read those stories –but I do. The severe, aggressive kids –the battered parents. It’s a living nightmare for so many.

I’ve had that moment where I realized that if this behavior was coming from a romantic partner or neurotypical child, I would have kicked their ass out a long time ago. We are expected to love and do our best for an abusive family member –because none of it is their fault, because the nature of things. Of course we would tolerate it and still love them! What’s a little Chronic Traumatic Stress Disorder amongst family! *shrug*

But we don’t really have to and we shouldn’t –not without proper support or from a distance.*

We have parents so scared of the concept of “placement” outside the home that they live with the abuse, while letting their own health go to absolute shit –finances ruined, relationships in and out of the home ruined, mental health down the toilet.

The sick joke of it all is that you’re still going to die and your loved one is still going to go into a home. And you will likely die a whole hell of a lot sooner than you would’ve if only you had made a plan and let go. I was a non-functioning shell of a human by the end of it. One year later and I’m barely back to human.

You can approach this one of two ways. You can wait until you die and your child gets emergency placement ANYWHERE in your state –or maybe even out of state, away from everything they know, to a place that you never vetted –OR, you can start to look now. Find the best placement. Find the best workers. Help your child get settled, see how the placement is going, make the ISP with the agency. Be involved –so that when you do drop dead, everything is set.

Are there bad homes out there? Yes, 100%
Are there great ones with caring staff? Yes, 100%

Was my son’s placement perfect –literally/physically? No. He wants to be out in the country, he’s not.
Does he have amazing carers who treat him like family? YES.
I can die in peace now.

Do things change? Could his amazing carers quit someday? YES.
I’m at peace knowing that I can’t control everything. I can only hope that everyone always does their best with the information I gave them and the wishes I have shared –that after I’m gone, other family members will check in on him to make sure he’s ok.

Stressing to death is no way to live. We are no help to our kids when we can’t function. I could barely *just* care for him properly near the end. I had nothing left in me. Now there are 4 people doing the job that I used to do. They have the energy to keep him busy and engaged. His life is BETTER away from a mother who was so fucking burnt out that the best I could do was take him out for a little ride every other day.

He is happier. He is less aggressive. Hell –he’s not aggressive at all. Turned out, as I had suspected, that the behavioral patterns became learned and his triggers + my presence = violence.

And yes, a year in, it’s still a little hard –he still asks me where we are moving to next. He still doesn’t fully ‘get it’. Last call, “Mommy buy a house in Texas in the middle of nowhere. Gavin and mommy move.”

But I’m slowly getting to that point where I have the energy to “reach back and help him”. Those were the words a good friend used once that pissed me off so bad at the time. “You can’t help him in the state you are in. Let him go. Get better. Then you can reach back and help him.” Those words were said to me seven years ago. It took another six years for them to sink in and realize my friend was right.

*Yeah… best placement/supports are hard to find for the most severe kids. I know. I know of kids living in hospitals and ERs waiting for proper placements. I know funding sucks. ALL THE MORE reason to start now. And be HONEST with your case workers. Do NOT hide the worst of the violence and destruction –because some other parent is being honest and they will get that first waiver that pops up before you. And when you’re ready to reach back, then you start making things better for them and everyone –through legislation, through building your own communities, through any fricken way you can think of.

I have no regrets. Everyone is better off. Had I done this sooner, years of frustration and trauma could have been avoided by ALL of us.

“But touch my tears with your lips. Touch my world with your finger tips –and we can have forever. And we can love forever.”

Sunny came home with a list of names.

I recently blew a job interview in a spectacular fashion. I didn’t sell myself. I gave generic answers. I gave bad answers that I could have turned around to explain what I was getting at –but didn’t. Just let it hang. I forgot to answer one part of one question they asked me (What are your strengths and weaknesses? Me: insert generic strengths, completely forget to answer weakness part). SMH. Spectacular.

The next day I was driving two hours from home to Pittsburgh to take my son with autism his Christmas gifts. He moved into a residential setting 8 months ago. Wait –back up, right? I haven’t updated this blog in so long most of you don’t know. That is a story for another day. He’s doing well, but not in HIS ideal location. More on that later.

I do my best thinking while outside of the house and driving. I had two hours to think about the rejection on the job offer and that’s when I thought about my answers. Cringe. By the time I got to Pittsburgh I had written a follow up letter, in my head, that was so wonderful, of course they’d reconsider me. (I might be a little full of myself, but it was a great letter!) The job in question was for Support Coordinator, working for individuals just like my son.

Then I walked into his house. And I remembered all the issues that I had with PA’s ODP in the 5 years we were trying to survive on their services. All the issues that are still affecting my son. The problems. The bad Support Coordinators we dealt with in the past (not all, we had one good one). The county holding the purse strings to my son’s waiver so tight that they denied him things that should have been paid for. The flat-out wrong information I was given. The questions I asked repeatedly that I never got answers too. The complete lack of understanding when it comes to those with severe autism and their unique needs.

I posted this on my FB page the night before my interview:

“In over preparing for my job interview I already started going thru the SC orientation on the MyODP website.
They make you watch this documentary about Penhurst and the movement to close the institutions. AND I GET IT. I DO.
But now I’m watching this webinar on their “Charting the Life Course” program and just… smh… so full of thoughts.
When I was handed that colorful packet of papers to plan out my kid’s life, I saw it as more overwhelming bullshit and I tossed it.
Their focus is SO ON Intellectual Disability that they are excluding the overwhelmed families who have violent children. I was too far gone to “chart my son’s life course”. I’m just trying to get through today.
This is WHY Gavin lives in a busy city –against his will. They are so focused on “Everyday living” “Person Centered” “Dream Big” “Consumer Choice” —but they are ignoring my son’s will and dreams because once upon a time people who wanted to live in the community weren’t allowed.
There are ways for individuals like Gavin to live full lives in a rural setting. And they won’t even hear it.”

The parents running ODP today are the old timers who saw the abuse of the institutions –but their information on severe and profound autism is just bad information. If they are getting input from individuals with autism, they are listening to the self-advocates who have nothing in common with my child. Nothing.

Gavin told me that he wants to live where he can just take off his headphones and play outside. He hides inside. He will go out for trips to the store and rides but he wears his headphones. He has to wear them in his own home too. What’s he listen too? LOUD fans. When I say loud fans, I mean, I put his headphones on once at the volume he listens to it at, and I screamed as loud as I could and I COULD NOT HEAR MY OWN VOICE. He’s destroying his hearing to block out the unwanted sounds of the city.

He did ask, repeatedly, for a house in the middle of nowhere, with no neighbors and no roads. Sirens set him off. Vacuums set him off. Smoke detectors and fire drills set him off (requirements for his home). The state of Pennsylvania says that he cannot have that. It’s too isolating. What happened to Person Centered? What happened to choice? What happened to letting the individual choose the life they want?

ID is NOT the same as Autism. Some Autism comes with a side of severe aggression due to sensory issues. Most Autism comes with sensory issues. Why is my son being forced into a living situation that is not what he wants? Don’t get me wrong, his staff is great. It’s the only reason I felt comfortable in this tough situation. But it’s not where he wants to be.
And he’s not the only one. I’ve read stories of kids being tossed out of their rural farm-type school settings in PA at age 21 because they are not kids anymore! Grown ups! Go live in the community! They were thriving, and now they are kicked out because once upon a time people who wanted to live in the community weren’t allowed to. Once upon a time was 50 years ago and the times and individuals are a changin’.

There is also no plan or place for these individuals when they are a risk of harm to themselves or others. Behavioral Health for them is non existent. Drug him? The medications that calm most people make him more violent. NO ONE is trying to help. In the beginning I had a Behavioral Specialist on his team. She was useless. Kept coming to the house asking me what I wanted to do with no answers or solutions. The meetings just got more and more absurd. Each time, asking me what I wanted to do next. Um. Waiting on you, overpaid, waste of oxygen. If I knew what to do, we wouldn’t be in this mess.

I finally took him to the ER after a violent episode. “I can’t do this anymore. We need to trial medications, but I can’t do that at home because most make him more violent, this needs to be done inpatient.”
The final answer? There are no beds anywhere in Western PA for him. You could stay here in the ER until one opens up in Pittsburgh, but that could be days, weeks because they pull from their own ER first.
Me: “So you’re telling me if I really want to get him in, I need to take him to their ER, two hours away?”
“Yes.”

They told me they’ve had to send away individuals threatening suicide. Threatening to kill family members. This is the state of services we’re facing.

I took him home.

It would take 7 months to find a home for him (we “lucked out” and got a consolidated waiver soon after I pulled the “I can’t do this anymore” pin, because another waiver recipient died. That is how you get the good waivers here, someone else has to die). It would have taken forever had I decided to wait for a house in the middle of nowhere, with no neighbors and roads, like he wants.

This is an unacceptable shit show. It needs to be fixed. Period. That’s the job I want. Fixing this mess. Not SC, my hands would be tied by the stupid regulations.

For the two hour drive home that is where my thinking went.
The ones among us who are still ignored because the people in the position of power and authority are damn clueless.

I messaged my Gov, Lt. Gov, State Rep, State Sen, and Federal Senators and Reps after that night in the ER. I got generic replies from two of the Federal peeps and dead silence from everyone else. That’s how much they do not give a fuck about my child and those like him.

I have A LOT to say on this topic so you will be seeing me around more regularly. Buckle up.

In the old tradition of ending with a song 😉

What’s Really Fueling Black Mistrust

There is an article going around titled, “Anti-vaccination leaders fuel black mistrust of medical establishment as covid-19 kills people of color” I won’t link it because they don’t deserve the ad click.

The article contains the usual bull shit. Wakefield. Discredited. Fraudulent. Retracted. Which is a lie.
IT LEAVES OUT SOMETHING VERY IMPORTANT.

You know what fuels “black mistrust?” It’s the CDC throwing data in the trash can that linked something like a 276% increase in Autism in black children who got the MMR before 36 months of age.

RIGHT IN THE TRASH. This is all public knowledge. They tried to water down the results and when they couldn’t, they simply excluded the kids in the study who this applied to. Changed the model midstudy. Which is against every protocol out there.

We are coming up on the 6 year anniversary of the #CDCWhistleBlower when all this information came to light.
Mainstream media: Crickets.

Fuck you, CDC
Fuck you, William Thompson. Turning over the documents doesn’t absolve your sins.

P.S. The study also linked all “isolated autism” to the MMR. Isolated autism means without other dx. So… the VAST majority of our kids. #GoodLuckWithYouVaccines

Religious Vaccine Exemptions. No, you don’t get to interpret my religion for me.

I’m no religious scholar –but I was raised Catholic. I have life experience. I’m a human being. I can think and read and comprehend. So I feel confident in telling you this: No, you don’t get to interpret my religion for me.

Before I get into this, let me share a couple Headlines/Snippets/And such with you:

“There’s nothing in Judaism that teaches against vaccination” 
(Except there is, based on interpretation.) –from an article about a flight attendant in coma from measles.

“According to experts, no major religious group advocates against vaccinations as a matter of official doctrine.”  (To hell with those minor ones that do!)

Of the major religions practiced in the United States, only the Church of Christ, Scientist (whose adherents are known as “Christian Scientists”) and the Dutch Reformed Church are the two religious groups that openly discourage vaccination.

From the above link:
“Islam in the United States, for the most part, has not opposed vaccination under the principle of necessity, meaning that vaccines are necessary for health, so they cannot be prohibited by religious law.”

Ah yes! The “AmeriPharmacan” Twist! However, Muslims elsewhere recognize that non-halal porcine products are in vaccines and refuse them.

“But what’s not as clear is why the religious exemption exists at all. ”  –OMG, Really? That would be Amendment 1 to the Constitution of the United States of F*cking America. Number 1. Top of the list. FIRST *right*, in The Bill Of RIGHTS.

“It’s almost impossible to find a religion that has a clear anti-vaccine stance.”
–Same link as above.

This one is particularly interesting:
“In this article we would like to explore whether different religious beliefs are, in itself, real exception for vaccination or they are just a parents’ excuse to avoid vaccination.”

“The Catechism of the Catholic Church does not cover the topic of vaccination directly. Indirectly, there are a few canons that could be applied to vaccination issue. The Church recognizes the ability of human intellect to meet the God (canon 39), which is the foundation for the dialog with other religions, philosophy, and science. The canons 1939-1943 emphasize the virtue of solidarity in the world. By spreading spiritual values, the Church has throughout the centuries helped to create better social and cultural conditions for living among different nations. Catholicism should emphasize the importance of taking the risk of side effects of vaccination to strengthen solidarity with other humans. By taking this risk, people participate in the protection of the entire society, including those who cannot be vaccinated because of medical contraindications or have been vaccinated but without adequate immunogenic response.”

Macche! Using religion to push vaccination. That’s a fresh interpretation. (*ahem* Interpretation… we’ll get back to that word soon.)

Or maybe it’s not a fresh interpretation, as someone on my FB page pointed out that it’s a Jewish commandment to Guard Ones Health! HER interpretation of that meant to vaccinate. MY interpretation of that is to NOT inject poison into you body in a false sense of creating health –but to do the work of keeping a healthy body by proper nutrition and avoiding toxic things.

From: What Does Jewish Law Say About Vaccination

“Guarding your own health doesn’t only make sense, it’s actually a mitzvah. That means that even if you don’t want to do it, for whatever reason, you are still obligated to do so. The Torah is teaching us that our body is a gift from G‑d, and we are therefore not the owners of it and we can’t cause it any damage.

It is not enough to deal with health issues as they arise; we must take precautions to avoid danger. The final chapter of the Code of Jewish Law emphasizes that “just as there is a positive commandment to build a guardrail around the perimeter of a rooftop lest someone fall, so too are we obligated to guard ourselves from anything that would endanger our lives…”

Well, the greatest risk to my life are the side effects from vaccines, not the normal course of a mild childhood illness that provides life long immunity from further risk of death. (These illnesses are harder to recover from if you get them as an adult vs in childhood –and vaccine failure from fading ‘immunity’ is causing just that, a push into adulthood of what was essentially harmless in childhood.)

Interpretation.

We can’t agree on how to interpret a stop sign. Some say it clearly means stop. I know of some rural intersections where I live, where most observe the STOP sign as a place to yield. And don’t get me started on “The Dress” or “Yanny V. Laurel”

Here is the “I’m no religious scholar” thing popping up. I had to do some googling… I’m finding that most people say there are 5-12 major religions of the world, yet estimated to exist are over 4200 religions.

There are over 2.1 billion Christians, and yet, that can be broken down into 5 main groups… and those can be broken down further. Why? Because we don’t all agree on the interpretations. So we split up and we start new churches and new denominations.

The World Religions Tree
View the zoomable version here: http://the40.org/world-religions-tree.html

Just because some religious leaders are interpreting their religious texts to fit this call for vaccination –doesn’t mean that I have to follow their interpretation. All Catholics didn’t start molesting little boys just because their religious leaders did it.

The Supreme Court of the United States of America gets it.
The US Supreme Court held in Frazee V. Illinois Dept. of Security, 489 US 829, that a religious belief is subject to protection even though no religious group espouses such beliefs or the fact that the religious group to which the individual professes to belong may not advocate or require such belief. This ruling is also reflected in Title VII of the Civil Rights Act of 1964 as amended Nov. 1, 1980; Part 1605.1- Guidelines on Discrimination Because of Religion.”

I would ask all of you to stand up for YOUR religious beliefs and hold your ground. You can legally claim religious exemption in 47 states (fight to get that freedom back in the other 3). You do NOT have to belong to a particular religion to do so. Your God doesn’t have to be a person in the sky. GOD can be an idea. GOD can be energy. GOD can be a tree. GOD can be the 14-year-old running this computer simulation in his moms basement. YOUR religion is YOURS. YOUR interpretation of your religious texts are YOURS.

What stale hell is this? Chapman Study SUPPORTS autism as a disorder of toxicity.

Right before I went to bed last night, this little gem popped up in my news feed.

Spike In Autism Caused By Shift In Diagnosis. –Chapman Study.

It took five minutes of me skimming their findings to comment:

“Did it ever occur to them that less kids are being Dx’d with SLD because as toxic exposures increase, the kids with SLD who were likely something mild like a dyslexia kid, or ADHD, are now the kids with a more severe Dx. The shift in Dx is because the child is more severely affected.”

Anyone who spends a couple days looking into how the forward thinking Doctors, Practioners, and Parents of today are treating autism successfully, they will see what we’ve all come to learn –which is that autism is a disorder of toxic overload. Research supports it. Labs support it. Clinical outcomes supports it. The fact that my 19 year old son’s ATEC score dropped from 100 to 51 after 4 months of a detox protocol really supports it.
(Link to the first TMR study on the Ioncleanse by AMD here. My son was in the second study. The second study showed even more improvements for kids of all ages with a more frequent protocol.)

SLD very likely included the “Canary Kids” Simply put, there are kids more genetically susceptible to toxins.  Genes do not change drastically in 20 years, environmental exposure can –and has. With less exposures these were very likely the dyslexia kids. Dysgraphia, Reading Problems, Comprehension Issues, etc. (Offically “Includes disorders resulting in difficulties with listening, thinking, speaking, reading, writing, spelling, or doing mathematical calculations.”)

This study looks at the numbers in 2000 and how they’ve shifted since then. My son was born in 1996. The kids in school in 2000 in the SLD category were the kids BEFORE the addition of the birth dose of Hep B. They were the beginning of the wave of new “Autism”. There was already a category for Autism in 2000. I promise you, no one would have confused Autism for SLD, even in 2000. There is no way you’d look at my toe running, hand flapping, non-verbal kid and say, “Hm. Call it SLD, we don’t know what it is!”

This article references NeuroTribes and the idea that the change in the diagnosing criteria in 1987 is the reason for the shift. 1987 vs. 2000. Are you telling me that no one in the school system or medical community picked up the DSM-IV until 2000? The shift we are seeing in the numbers in the diagnostic categories for this study shows what happens when you take genetically susceptible kids and pile more and more toxins into their bodies and brains. Kids are WORSE. Yes, the same number of kids are affected, but the severity is the issue.

So, I’m going to ask you to consider that our DNA has not changed significantly but that toxic exposure HAS increased.
Consider that some kids are genetically susceptible.
Consider that the numbers shifted each year because as toxic exposure went up, kids tipped from having a less severe issue like “reading comprehension problems” to full blown “autism”.
Consider the implications. Whether you believe it is vaccines, plastics chemicals, GMOs or whatever… Consider it.

So, thank you Chapman! Your study supports what myself and many in the field have been screaming from the mountain tops –you just were not equipped with all the info when you interpreted your findings. Please go back and look at it again with this information.

Genetically susceptible kids exist. FIND THEM. Pretty please.

Also Read:
Is The Autism Epidemic Real by RFK Jr.

and

California’s Autism Increase Not Due To Better Counting. UC Davis, M.I.N.D. Institute (way more science-y than Chapman 😉 )

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