Category Archives: Uncategorized

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 😉

Troll Food, ’cause random strangers know your kid better than you do.

[Be sure to watch the video at the end. We all need to keep laughing. It’s important. We’d lose our minds otherwise.]
I know we really shouldn’t feed the trolls, but frankly I felt like I needed a link to post to them instead of my usual image which is:

fym

So why not feed them a little knowledge. Not sure it’s possible with these idiots, but if I save one moron… well… Then there is only about 7 billion more to go.

Breakfast:

I woke up to this tweet this morning:

tweet
With my reply. Enjoy the typo. Hadn’t even had my morning coffee. if* not is, of course.


It doesn’t even matter to you trolling idiots that William Thompson actually admitted manipulating data to hide the MMR/Autism link in a press release through his lawyer. A lawyer who specializes in whistle blower cases.
fraud

First off, who says Snopes is the end-all of fucking everything?
Read this.
And “The Mikkelsons admit, however, that Snopes is only as reliable as the sources it cites, and they invite readers to look for the truth themselves.”
When you people use Snopes as  your argument you just prove our point –Most Americans are lazy and can’t be bothered to read for themselves.

Since you all appear to be too fucking lazy to read the press release, allow me to copy and paste for you.

“I regret that my coauthors and I omitted statistically significant information  in our 2004 article published in the journal Pediatrics. The omitted data suggested that African American males who received the MMR vaccine before age 36 months were at increased  risk for autism. Decisions were made regarding which findings to report after the data were collected, and I believe that the final study protocol was not followed.”

Is that simple enough for you? Hey Snopes, It’s NOT “Probably False” anymore. [Update: Now listed as ‘mixed’ on Snopes. Of course it’s funny that the ‘mix’ comes from them quoting that douche on ‘Science Blogs’ *eye roll*]
[Second UPDATE: It now reads FALSE. WTF are they smoking? –Read this iReport about it]

Wrap your head around the fact that his lawyer ALLOWED him to SAY that. While the Press Release does reek of ‘lawyered-up’ you have to see it for what it is –for what his lawyer actually allowed to be said. You realize what lawyers do right? Trust me, I once went to law school for a whole year and then dropped out. (Thanks Autism! –and trust me, you learn everything in the first year. The last two are just hazing and profit.)

Lunch:
I posted this picture to Anderson Cooper with a message that this was a Before and After MMR photo. To LOOK into my sons eyes. I get this reply:

tweetdouche
Here is the photo I posted, you’ve seen it before:
beforeafter

Ok, twatrocket, let me explain something to you… 1. I know my kid is beautiful. He has my genes. I’m fucking smoking hot. Thanks. But, since you are not being sincere and mean this as a troll, I shall explain some more.

2. If you can’t see the OBVIOUS neurological deficits in this picture, let me break it down for you –as a portrait photographer (Yes, I’ve done every job at least once.) Every kid can have a bad day. But I could always get a kid to smile. Even my toughest customers. I once did a hand stand while making ape noises to get a kid to smile.
That picture on the left is my son at 15 months. He was an easy smile’r.  A couple days after that first photo he got his MMR and DTaP, we injected him with neurotoxins. The second photo was taken at 18 months of age. We worked hard just to get him to look at the camera. Just to look at us. He was more interested in that block in his hand. The block he kept flipping over and over and staring at. Hand stand, ape noises… Cookies as bribes… lots of tears. And that blank stare was the best one we got.

I looked over a lot of my snap shots from this time period. Before and After. Before? Lots of happy smiles and eye contact with the camera. AFTER? ALWAYS. ALWAYS the same fucking pose. The thumb in his mouth –he’d hook his thumb behind his front teeth to put pressure on the roof of his mouth. He wasn’t actually sucking his thumb. It’s a soothing pressure point. And he’d rub his nose with his finger. Again, soothing. Instinctual. At 18 he still does it. Often when we are out in public and the sensory stimulation is too much.

I put together a little collage last night:
beforeaftermmr

Yes, his downward spiral began with the Hep B at birth. But he was still THERE. He still had language.  He’d still look you in the eye and smile, respond to you. But for a couple months after his 15 month shots, that bottom row… All the photos of him look the same. That is not an energetic, happy toddler. That is a sick child. Lacking energy, lacking language, lacking any sort of connection to his environment. That is a child suffering from an acute insult to his body and brain. Line this up with his MTHFR gene mutations and it all makes perfect sense. Google it trolls, I am not doing any more fucking homework for you.

I have videos too. They are too hard to watch. Before and After. Maybe someday.

Dinner:

I am college educated with a genius IQ (just bragging). I am not an idiot. (Don’t let my typo’s fool you). But they duped me. They did. [Yes, I know typo’s is a typo. It’s funny. Trust me.]

I am one of the most skeptical people in the world. Yet, I can admit, I was once brain washed by the Church of Science. I believed what Doctors told me, because they went to school after all. I was you–the mere “Useful Idiot Troll”. I believed that the CDC and FDA really did work for the people. But then I decided to read for myself instead of believing what authority figures told me. Guess what? They work for profit, not for the people. Vaccines do injure. More than the 1-in-a-million that they love to throw at you. It’s biologically plausible and probable. It’s OK that you were duped. It happens. Please read a book or two on your own. Now, if you are a troll-for-hire getting paid to do this… well… I refer you to the first photo in this post.

If you are waiting for the mainstream media to cover this, like one person told me, then you really have no idea how this world works. Hint: Money.

The information is out there for you. Just waiting to be read. You DON’T need some pretty face behind a news desk to tell you what to believe.

Take a LOLZ break. Image from the hilarious Liam Scheff. You can also find him on FaceBook here.
liams

SNACKS:

For those of you who look at a photo of my child and tell me “what’s what” –tell me that I don’t know what happened to my own child. Even though MEDICAL doctors have since looked over his records and told me that YES, he most likely DID suffer encephalitis with his first Hep B. Those of you who STILL want to tell me that you know my child better than I do, better than his doctors do:
10389541_919874798027275_7386252446100347777_n

And the rest of you…
–‘Vaccines don’t cause Autism, they took the mercury out of the MMR! And besides Dr. Wakefield lied!’
10509705_10201685558975628_82617100381620467_n

–‘Vaccines don’t cause autism, they studied that and they are safe.’

cdcmeme3
HINT: The current vaccine schedule has NEVER been tested.

And as a general ‘last word’ to any other fucking stupid thing you manage to say… (I actually saw one write, “If this proves to be true, those crazy anti-vaxxers will have to admit that this study means it only related to an increase in black boys and not everyone.” *facepalm* DO THEY LISTEN TO THEMSELVES??) Anyway, in general:

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Enjoy:

Meet the Douchebags, Julie Gerberding. aka Cruella de Vil

“I lie for profit. Fuck your stupid kids, anyway” –not an actual quote, but pretty sure she’s thought it.

Every time I see a photo of her smiling… I just want to smack the smile right off her face.

So who’s Julie?

She’s the former director of the CDC!

“Dr. Gerberding led the Centers for Disease Control and Prevention (CDC) as director from 2002 to 2009. During her tenure at CDC, Dr. Gerberding led the agency during more than 40 emergency response initiatives for health crises including anthrax bioterrorism, food-borne disease outbreaks, and natural disasters, and advised governments around the world on urgent public health issues such as SARS, AIDS, and obesity.”

Funny… because the autism epidemic was hitting the fan hard then and she did absolutely nothing to address that during her tenure –um… well, unless you count making sure more kids became autistic from adding more and more vaccines to the schedule. Vaccines that she knew were linked with a raise in autism risk.

Then there was the Hannah Poling case.  The govt compensated the family without really debating the evidence. They “conceded” the case.  Her dad is a neurologist and had his ducks in a row and the govt knew they’d lose, and it would open the flood gates if they ruled on the evidence –so they quietly and quickly settled. The CDC tried to spin it by saying Hannah had a rare underlying mitochondrial disorder.

“But there are circumstances that make Hannah’s case a bit unusual. For one thing, she received an unusually large number of vaccines in 2000 (when thimerosal was still in use). Because of a series of ear infections, Hannah had fallen behind in the vaccine schedule, so in a single day she was given five inoculations covering a total of nine diseases: measles, mumps, rubella, polio, varicella, diphtheria, pertussis, tetanus, and Haemophilus influenzae.”

First, getting the MMR, DTaP and Hib in one day is common place. That is bad, it’s too many…. But not an “unusually large number”. Kids often get more than that in one day.  And in 2000 that was common. My kid got the same amount of mercury, in the same ‘unusual’ doses as Hannah. They all did back then.
Also, notice the ear infection bit? Yeah. ALL OUR KIDS HAVE THE SAME EFFIN MEDICAL HISTORY LEADING UP TO THIS MMR REGRESSION. Ask any autism mom. Reflux, eczema, allergies, chronic ear infections –all gut/immune/neuro issues. *RED FLAG*

So onto that “rare mito disorder”

Another confounding issue in Hannah’s case is the finding that she suffers from a mitochondrial disorder — a dysfunction in basic cell metabolism.

Haaaaaaaaaaaave you met MTHFR?

The one doctor in the Time article is puzzled?  If you’re puzzled you aren’t paying attention. Our kids are full of genetic flaws that mess up many of the basic cellular metabolic processes.  They can’t detox. They can’t handle heavy metals. They can’t get the same nutrition from the same food a non-MTHFR person can. OR if they can, they can’t process it right.
(Side note: My youngest child has worse MTHFR and DETOX profile mutations than his autistic brother. But he doesn’t have autism. The difference? I didn’t vaccinate my youngest. He’s 10. And still alive. And healthy. LIKE…. CRAZY HEALTHY. LIKE……. ‘UNLIKE any vaccinated child’ healthy. Liiike ‘has an actual, working immune system’ healthy. Liiiiiiiiiiike ‘we all got swine flu in ’09 and Gavin and I were in bed, sick as hell for 8 days and the unvaccinated child, who was 5, was sick for 2 days’ healthy.)

MTHFR is not uncommon at all in kids with autism. Cell metabolism disorders are COMMON in all kids with autism.
But JULIE goes on CNN to give it the “rare” spin. And by the way, at this point she is fully aware that we all call her Cruella.

You can clearly see why... ;)
You can clearly see why… 😉

The first thing I noticed when she went on CNN was how soft and pretty she looked that day.  She dyed her hair to even out the grey, got a cut, wore a pink suit and spoke softly (keep in mind, as she is saying this shit she knew full well of the cover up inside the CDC over the MMR/Autism link.)

Pretty in Pink

Before you watch the video below you need to understand that “autism” is NOT a THING in and of itself. It is a collection of symptoms. If you have the symptoms… you HAVE autism.
In this case they started saying the phrase “autism-like symptoms” as spin.  They were actually saying that the vaccines didn’t cause autism, they caused a fever…. which caused autism-like symptoms. Chew on that a minute.

–I’ll stop with my commentary because the video does a nice job of tossing up everything I would say in rebuttal. It’s ten minutes, but I think you can spare it.

And I say again… NOW WE KNOW that she was just flat out lying during this interview.

So where did Julie go in 2009 after leaving the CDC?

Crazy, right?
Crazy, right?

Yep, she took a job as President of the Vaccine Division at Merck –the same company that makes the MMR vaccine, and MOST of the vaccines for kids and adults, that are on the CDC recommended vaccine schedule. Read this vomit about her too.

So, in summary, Julie KNEW MMR was linked to autism (The whistle blower, William Thompson, sent her a memo about coming clean before the 2004 IOM meeting on the issue). There is no way she didn’t know that cellular metabolism disorders were common in kids with autism. She lied for money. She didn’t give a shit about your kids and now she collects a fat paycheck, working for the company she lied to protect while working as a public servant, on your tax dime, under the guise of pubic health.
Julie, congrats on being my FIRST Featured Profile on “Meet the Douchebags”.
I look forward to her ass being sent to prison… and gosh, she’s so pretty… she’ll make someone a nice bitch, won’t she?

Autism Scrub Bucket Challenge

This ALS Ice Bucket Challenge, gave me an idea for one for Autism.

yep

For the Autism Scrub Bucket Challenge you grab your scrub bucket, gloves and non-toxic cleaning supplies and go to the home of someone with an autistic child who fecal smears and you help scrub their walls and floors… and furniture… and light fixtures.

When you are done, Never EVER say, “I don’t know how you do it!” No!!! Replace that thought with the act of giving them a $50 on your way out the door. Post your videos!! I nominate ALL OF YOU.
#AutismScrubBucketChallenge

UPDATE: So, I have been getting serious inquires from people about this and a lot of hits on it from search engines. I did this a bit tongue-in-cheek –I have a twisted sense of humor. That doesn’t mean you can’t do it 🙂 Find a family to help. Clean or babysit or slip them some cash. Trust me… none of us ever have enough money. If you want to donate to an org, give to The Nation Autism Association. THEY HELP REAL PEOPLE. DON’T GIVE TO Autism Speaks.