Find your people.

A couple days ago my son’s ABA told me about a local support group that meets near me… I made a face. I couldn’t really put it into words, why I had no desire to go to a support group.
Then, yesterday, a blog post pops up in my feed that summed it up perfectly.

You’ve heard the line, “If you met one kid with autism, you’ve met one kid with autism.” Same holds true for the parents. And you don’t know that when you’re new here. You open your life to all kinds of parents just in an attempt to find people. It won’t take long to realize that having a child with autism doesn’t mean you’re going to gel with every other autism parent. Don’t look for people… look for your people.

wheremy

In the beginning I stumbled across eGroups. Yeah… I’m that old. Hear Their Silence was the group I joined. I still have great friends from those days… and I’ve fallen out with some of them, too. Onelist bought eGroups, and soon Yahoo bought Onelist. Yahoo Groups. Most of them are still there. You can read all our messages –and fights, going back over a decade. Then we moved onto Facebook. Which I love so much better than email groups and lists. You get to know your people even better. They are more real when you see the picture of their martini at 10 a.m. or the cute photo they just snapped of their kid using the dog’s butt as a pillow. We love facebook.

Oh, we get shit for being on it too much… but here’s the thing… the chance that YOUR people all live within 5 miles of you is slim to none. Not when it comes to the particular struggle that binds you –autism. My people are scattered all over the country and globe.  How else can we connect on a daily basis?
I did meet one mom in Publix a while back and we hit it off immediately. I knew she was one of my people as soon as she started looking over the food in my grocery cart –and then I lost her number. Babe, if you read this… HIT ME UP!

This morning I was reflecting on the struggles I am having finding appropriate doctors for my son right here in Fort Myers. I need doctors who understand why I don’t vaccinate. I need doctors who understand that my son is not his “autism” diagnosis –that he has medical issues that can be addressed, medical issues that cause the appearance of autism. It is an anxiety inducing struggle. I thought of the support group. Maybe I should go. Maybe I’ll find one person like me… maybe. Maybe I will find that mom who knows exactly which doctors for me to call.

Wouldn’t it be great if we had a visual way to identify each others autism “philosophies”?

Now, I’m pretty good at reading the energy of people and knowing who I will click with the minute I interact with them, and that can be online, over the phone, or in person. It’s rarely steered me wrong… but still… My mind immediately went to those misguided teen girls who wore different colored jelly bracelets to let people know what kind of dirty dirty sex acts they were down with (OK, misguided… kinda brilliant…).

This is the shit that entertains me… Green for antivax. Purple for clean diet… It made me laugh, anyway. All before my first cup of coffee.

Finding your people doesn’t mean you have to close yourself off to those whose kids have a different diagnosis than you. My best friends have kids who are way higher functioning than mine. Some have Asperger’s not Autism. Some of their kids are 4 and some are 24. It’s not about the struggle… and DO NOT judge the struggle based on diagnosis. That’s nonsense. It’s about finding parents who share your philosophies, or some magical mixture of love and respect for them –that even if you don’t share philosophies, you are still friends. Find them, and connect with them. So I second that blog post above… Find your people.

I think I might go to that support group. I’ll be looking for bracelets 😉
I’ll be looking for Babe!
–Oh and as for the rest of my bitches, I have declared that I AM going to AO this year. See you soon!

This song of my people:

The Needle and the Damage Done.

I think every autism parent whose child is a non-responder wonders at some point… why? Maybe I just haven’t found the right treatment, yet. Maybe I didn’t try the right thing long enough… Maybe the damage was just too much, too bad, non-reversible. Maybe I missed that window.

Thanks to hindsight and medical records it took me a while to realize that my child was not born with some kind of delay. Yes, I was one of those moms who thought my son was “born with it” to *some* degree –even though I witnessed a regression immediately following his MMR/DTaP at 15 months. “But you know,” I would say, “from the start there were issues. He had some words… but only about 6. And there never was shared attention, not really… he never pointed to a thing. And all those medical problems! The allergies, the reflux, the eczema… the 106 fever… he was a sickly baby.”

I had one of those ah-ha moments about 6 years ago… when you realize that your child was perfect when he was born. Perfect. For a whole day. Then he got his birth dose of Hep B, and like dominoes, it all went down. Projectile vomiting. Screaming for two solid days. The rashes… He had an auto-immune reaction to that Hep B. And he also had brain swelling. –Encephalitis. A known and recognized and compensatable vaccine injury. I compared his first 15 months to a boxing match. With every round of vaccines he’d get knocked down on his ass… but then he’d get back up. Recovering a little from the last round, but not fully. Each round… a little worse, until the 15 month K.O. punch.

A known and compensatable injury. But I missed it at the time. So did his doctors. Those Gods that you people defer to –when you tell me my opinion doesn’t count. Because I don’t have MD after my name. Because somehow that means I can’t possibly read and comprehend medical literature and concepts for myself. They aren’t gods.

Recently I discussed my sons case with a couple doctors, and upon reviewing his charts and history, they agreed. He suffered a compensatable vaccine injury –and these were not “autism” doctors. These are general practitioners with no dogs in the fight.
So why don’t I file? I can’t. It’s too late. More on NVICP later… As what I’ve typed so far isn’t new info from me, you can find it in other blogs… but it’s an intro to what I wanted to talk about today… which is, What exactly happened to  my son at his 15 month “well baby” appointment.

I shared a photo the other day that you have all seen several times from me. And it shook the troll tree.  They took to my page with personal insults and a death threat, even! How dare I spread illness! How dare I kill babies by telling my son’s story! This one:
beforeaftermmr

One mom implied that I took a couple sleepy “nose picking” photos of my son to fake my point.  Thing is…  I have a shit ton of photos of my child. Before and after. I have video… this was just a sampling. They are all the same. For months after that vaccine my son took up that pitiful position. Lost. Gone. Self-soothing. He doesn’t suck his thumb. He is using it to apply pressure to the roof of his mouth –it’s a great pressure point for comfort. He did this for such a long time that his hand pushed his bottom teeth out of alignment. By the time he’d actually take a break from this position, I chalked up the droopy lip to misaligned teeth.

I even had a professional working with my child point it out.
I even had a doctor point it out.
Both times *I* dismissed it. “Oh… he pushed his teeth out of alignment.”
Yes, folks, the “Know It All” in my name is a joke. For those of you who miss the sarcasm. I had medical professionals willing to tell me it looked like my son had a stroke, and *I* blew it off. A compensatable vaccine injury.

Yesterday, a friend shared that photo with the words, that to her, it looked like a stroke.

Stroke.
I hadn’t even entertained that word before yesterday.
But once I “heard” it…

There is another photo… most of you have seen it as well. I took it a couple months ago and it disturbed me once I saw it. But I got it all backwards. To me, it didn’t look like my child… I considered the angle, maybe some lens distortion… I thought perhaps he had a sinus infection on the left side of his face that was making him puffy, making his face so asymmetrical… I posted it on Facebook to my friends asking for opinions… and they didn’t notice the “puffy” left side –they all noticed the droopy right side. I was saying, “No, No… he’s been like that for years… that lip… misaligned teeth…” But then I looked at his eyes… I’d been looking at that face, with the obvious nerve damage, for 16 years and missed it.Gavin.

The left side isn’t swollen. The left side is what the right side of his face SHOULD look like.
–Still, my brain didn’t really process it. Sure. One more thing…
Yes, he regressed fully into moderate-severe autism after his MMR. But I never knew what to think about that because he had no signs of gut damage. (He was never scoped, maybe I am wrong on that, but we didn’t have any of the bowel symptoms that other families see.)

But what about that DTaP? It was his first DTaP –all the others had been DTP. The more dangerous, whole cell, version of the vaccine that was basically the reason behind the NVICP. In 1996 it was supposed to be off the shelves. Yet, my son got three. Dec 96. Feb 97. April 97.
Even the “less dangerous” (NOT SAFE) DTaP can kill and maim.  And he got it in combination with the MMR.

My son was born in 1996. He got far less vaccines than kids get today –but the ones he got? ALL of them are off the shelf today –think about that. He got OPV. Not given today. He got DTP. Not given today. All his other vaccines were fully loaded with 12.5 or 25 mcg of mercury. NOT given today (Unless you get the IM flu shot, there is still the full amount of mercury in the flu shot. In the adult version, which is given to kids age 7 and older, 25 mcg. In the “kids” version 12.5 mcg of mercury, but babies are given two their first year –so they get 25 mcg of mercury. A known neurotoxin, in case you’ve been living under a rock.)

And don’t get me started on aluminum.
Today you think kids are getting “safer” vaccines –but they are getting almost twice as many as my son got. STILL with aluminum. STILL with mercury. Nothing’s gotten better.

Some kids are genetically susceptible to damage. Yes. But we all have a tipping point –as evidenced by the, still, increasing number of cases year after year. My son has several methylation cycle mutations in his DNA… But where did those mutations come from? Our environment is toxic. Chemical exposure is altering DNA, and we are passing those mutations to our kids… and the needle… it’s too much. You can read my post on Agent Orange/Dioxins, Vietnam Grandpas and MTHFR moms and autistic kids if you want my thoughts on that.

I learned my lesson the hard way with my family. My autistic son and I are fully vaccinated. He paid greatly for that. I pay too. Not as great for my own vaccine injury, but this whole house suffers. And your tax dollars suffer, I promise you that. The future of the human race is suffering.

Yet, today we are in the midst of a measles “epidemic” (their words, not mine… 70 cases make an epidemic of a once common childhood illness! But 1 in 68 kids with autism, Meh. Nothing to see there! –though those are the numbers for kids born 13 years ago, we know it’s closer to 1 in 20 for kids being born now. By 2025, an MIT scientist has estimated 1 in 2.) And strangers are telling me that I should vaccinate my youngest child. The one who is the winner in all of this. The one who was spared the needle and the damage done. I should vaccinate him anyway, they say –to save THEIR child. If it kills my son, if it causes a brain injury… “Oh, well, at least he won’t get measles.” Except –that is not even true because we know the vaccine is not effective.  My youngest has worse MTHFR mutations than my autistic child! Hear this well… over my DEAD BODY will my youngest be sacrificed for your ignorance. I had a doctor willing to write me a medical exemption for vaccines for him, based on family medical history. Don’t even try to tell me that you know better than a medical doctor familiar with my children and our DNA. And THAT doctor is not an “anti-vaccine autism” doctor. He runs a family practice. He vaccinates his patients.

There ARE susceptible groups to vaccine damage.
My children are among them.
Why do we not want to figure out who they are?
Why do we not want to back the vaccine schedule up to the 1983 one –the one that gave far less vaccines and in a time when there were no mass deaths from vaccine “preventable” illness? And in a time when autism rates were 1 in 10,000.
We’ve gone too far.
Pharma makes BILLIONS upon BILLIONS.
They cannot be sued for the needle and the damage done.
So what is stopping them from convincing you that you need a vaccine for every little sniffle that comes your way? There are billions of dollars to be made! “Health and Wellness” be damned!

Our only compensation can come from the NVICP –and there is only a three year window to file. From when the injury occurred… NOT from when it was discovered. My new found hunch, that my son suffered a stroke 16 years ago? Sorry. SOL on the SOL.

I sing the song because I love the man…. I know that some of you don’t understand.