Antidote for Haterade

I’m called the “Prof” around here for a reason.  Most of my postings probably appeal to people like me who lean — at least slightly — toward the TJ (thinking and judgment) end of the Myers Briggs scale than the FP (feeling and perception) end.  Which doesn’t mean that I don’t get stirred up by the Rev on a roll, because I sure as heck do.  I can be surprisingly emotional for someone so Spock-logical.  I don’t often talk about my spiritual convictions, even though I take them extremely seriously, because I think my religion is truly no one’s business but my own, but today I’m going to borrow the Rev’s robes and take a bit of a dive off the deep end and get into more “emotional” territory.  Wish me luck…

A friend posted a link last week to a Facebook page.  She posted the link because she wanted us to report it for hate speech.  It’s gone now so I can’t quote it or post a link, but the gist was that it was a page dedicated to ending parking permits for people with disabilities.  I personally don’t have a parking permit for any disability, but as the girlfriend of a man whose daughter has lived with cerebral palsy for 21 years now, I have to admit that I take the subject personally. The page title alone did not qualify as hate speech (I tend to give people the benefit of the doubt and I also allow them the right to have a different opinion from me.),  but I clicked on the group’s description and there was a large paragraph
explaining just exactly why this group thought that parking permits should be ended.  To say that it was ugly minimizes the visceral feeling I got reading it.  The person who wrote it implied that if a person could drive, then he or she can walk just as far as an able-bodied person and therefore should not get the advantage that a parking permit bestows.  And if a person can’t drive, then he or she should not be out and about because he or she is just too disabled to be worthy of being in public.

Wow.  Someone who can’t function as well as this ablebodied person should not get help to interact with the public because this person has judged him or her and found him or her not up to standards. Sorry, Christopher Reeve; sorry, Stephen Hawking; sorry, Brooke Ellison, you’re just not what we want around here.

The paragraph ended with a call to civil disobedience.  Take a picture of your car straddling handicapped parking spaces, steal a parking permit if you get the chance, things like that.  These people were actually advocating targeting innocent people.  In my book, THAT qualified as hate speech.  The group was reported a number of times and removed from Facebook, but not before I got an email saying “After reviewing your report, we were not able to confirm that the specific group you reported violates Facebook’s Statement of Rights and Responsibilities.”  Really?  It’s okay with Facebook to advocate committing crimes that target people with disabilities?

This kind of hate, it’s not new or unusual.  It appears everywhere, certainly all over Facebook.  There are those who rave against poor people, rich people, gay people, black people, illegal immigrants, Islamic people, fundamentalist Christians, WASP males, women who want legal abortions, legislators, lobbyists, Andrew Wakefield, “the government,” the CDC and vaccine manufacturers.  You name the group, I can probably name someone who hates them.  Most of these people don’t think of themselves as promoting hate.  They think that they are accurately judging the situation.  But they’re not, they’re blinded by a big ol’ plank.  As someone very wise once said, “First take the plank out of your own eye and then you will see clearly to take the speck out of your brother’s eye.”

What is the plank made of?  Fear.  Every little bit of hate comes down to fear.  Lots of different fears, but always at the bottom is fear.  In the case of the handicapped-parking-permit haters, it seems to be fear that someone else is “getting a better deal” than they are.  Now someone from the outside can see that that’s laughable.  Someone who can’t use their legs and is confined for life to a wheelchair is obviously not “getting a better deal” in life than someone who has to park a few minutes farther away.  Neither is someone whose child is severely affected by autism and needs that parking permit in order to get through the day.

People who rail against the CDC and the vaccine manufacturers?  I know what they’re afraid of.  They’re afraid that the power those organizations wield will harm more and more people as time goes on.  They’re afraid that they won’t be able to recover their children from the harm already done to them.  And they’re afraid the powers that be will be able to stifle truth forever, and we won’t be able to turn the tide and make our way back to health.

The people who hate “anti-vaccine whackos” are afraid of infectious disease.  They can’t even hear what we are saying because their fear is so great.  If you investigate the facts, you can easily see that the odds of infectious disease, especially fatal infectious disease, are actually extremely low.  If you investigate further you find that there are ways to treat infectious diseases that make fatalities and complications even less likely.  So, vaccines are more of an inoculation against the fear of disease than the disease itself.

Fear blinds people to facts, but what’s more it blinds people to the humanity of the “other.”  What is the antidote to this fear?  To any fear?  The only thing I know of is “love.”  If you love the “other,” it is much harder to fear him or her.  I’ve seen it work time and time again.  Just recently I read a blog post where a woman, who lived in a fundamentally fundamentalist town that was known for being homophobic, discovered that her beloved teenaged son was gay.  Guess whose fear dropped away overnight?

It’s so easy to do what my friend Tex calls “drinking the Haterade.”  Intuitively, we all know it’s a bad idea, but sometimes it seems really hard not to.  Haterade can be disguised as all kinds of attractive things, a nice frozen margarita for instance…  *sigh*  Where was I?  Oh, yeah, Haterade.  So, what can you do when you figure out that frozen margarita was really Haterade?  How do you convert the hate into love for someone you don’t know and think is truly despicable?  Well, there’s a native American saying: “Before you criticize a man walk a mile in his moccasins.”  Here’s where a good imagination can come in really handy.  If you can imagine what it’s like to live life as that person, you don’t have to literally don the moccasins.  I’m actually a trained actor, so I’m pretty good at this.  If you don’t have that kind of imagination, you can find other ways to do that walk.  One of the best ways is to talk to people as non-judgmentally as possible.  See what they have to say about their experience while you’re withholding judgment.  That same wise man said, “Judge not lest ye be judged” and dang if he wasn’t right about that one, too! I am often surprised at how reasonable people are when I give them a chance, and how much I can learn.  If you can let go of the fear for even a moment, the plank may dissolve forever and you’ll find you can see a whole lot more clearly.

It’s really easy for us here at Thinking Moms to assume that staff people at the CDC, or Merck, or GlaxoSmithKline, are evil and intend to do great harm to the world, but life is never that black and white.  I think we all know that there are conscientious people there who truly believe with every fiber of their being that vaccines are the best thing modern medicine has to offer, and that we are putting everyone in danger when we question that.  Of course, I don’t agree with them, but understanding that there are real people on the other end of the discussion who are trying to do their best for the world as much as I am helps me to keep open and civil.  The more I can lower the overall fear level on both sides, the better. I take the attacks far less personally, which means that I find the back and forth less draining, and I can keep it up for longer, and get more people listening.  And, when it comes down to it, that’s really what this is all about it, isn’t it?

~ Professor

Posted in Blogs by Thinking Moms' Revolution, Professor TMR | 2 Comments

I Know What I Saw

At Autism One in 2011 I was asked to fill in for Louise Kuo Habakus on the Human Rights Panel which was the most exciting thing that’s happened to me since my life took a nosedive into Autism six years ago. I loved the book Vaccine Epidemic edited by Louise Kuo Habakus, MA and Mary Holland, JD and I was deeply honored to be asked to participate on this panel with Mary Holland, Kim Mack Rosenberg, JD and James Turner, JD. I haven’t spoken in front of a room full of people for over ten years, so I was really nervous. The podium was on wheels and I was gripping it so hard I almost pushed it right off the riser sending me into the audience ass over teacups. Thankfully I found my nerve and there isn’t a warmer group to speak in front of than Autism parents. I hope I will get to meet you at Autism One this year and I hope you will join me in attending the Advocacy Track presentations http://www.autismone.org/content/advocacy-track. This is an excerpt from the talk I gave last year.

Human Rights Panel Autism One 2011

I am the mother of two children, one of whom, was severely injured by his vaccines. When I tell people that my son Nick was injured by his vaccines they’ll often say “are you sure?” This really strikes me because if I had been standing on a side walk and Nick had rushed into the street and been badly hit by a car, no one would ever doubt me when I told them. Yet my experience as a witness to his regression after vaccination is frequently discounted.

As well as a mother, I am also a psychotherapist. I have been practicing psychotherapy for 17 years and in that time I have worked extensively with survivors of trauma. There are some striking parallels to the experience of a trauma survivor and that of the family of a vaccine injured child. I am in no way equating a vaccine injury with sexual abuse.  However, in both situations there is the inclination not to believe the victim, or in our case, the parents. They call this Secondary Traumatization. In this situation the survivor is not only having their reality invalidated, but they are essentially also being accused of lying. In situations of rape the evidence is often mishandled, lost, or not collected quickly enough. This bungling of evidence frequently undoes any legal recourse the victim may have, and removes the concrete proof the victim will need to cling to, as they try to make sense of their own muddled memories. There is often an artificial statute of limitations. Finally, there is a sense that the victim should already be over it.

As parents of vaccine injured children, we are not believed, our children do not receive quick, definitive lab work as they are regressing or shortly after an adverse event, and we all know that the statute of limitations on our grief, like that of the vaccine court, is far too short.

When a child has an adverse reaction to a vaccine the parents are the first responders. Yet unlike a crime scene when the detective arrives, or in our case we get the child to medical attention, the doctor most frequently doesn’t believe us. We explain; we took a healthy child in for routine shots, we took them home and perhaps immediately, within days, or within several weeks, which was our case, our child has disintegrated before our eyes…A + B = C. We are told “No, it didn’t happen.” Now because we are being talked out of what we saw with our own eyes, confusion sets in. When we add to this the ‘doctor as God’ complex and the sexism still rampant in medicine today, mothers often feel bullied. This creates the kind of psychic dissonance that is so much a part of trauma. Add to that the exhaustion of caring for the incessantly screaming child, the worry, the grief, the rage… and you feel crazy.

When my son regressed into Autism I felt like I lost all solid ground as a mother. I didn’t trust myself, I couldn’t find my center. I couldn’t connect back with the certain, nurturing person I had been just a month before. If what I had seen hadn’t happened then I didn’t know anything anymore. This kind of disconnection to self is also a classic symptom of trauma. At that time, Nick was about 2 years old,  I found myself watching him like a scientist would, collecting data on his first signs, that turned into sounds and then the first words to come back. I wasn’t mothering him from my heart, although I loved him dearly. I was mothering him from my head. I had seen his regression after vaccination and yet I was told by his doctors that his autism “had just occurred as it does in kids between the ages of 15-18 months”. This was so different from what I had seen with my own eyes and experienced viscerally in his feral screams and failing body that I no longer trusted my instincts. I was as disoriented as he was.

There are parallels for us in the healing stories of other victims as well. Like the trauma survivor, when we begin to speak our truth, first timidly and down the road with confidence, we move from victims of our experience to survivors. Where does the confidence to speak up come from? From feeling encircled by others who have been through the same thing and from being believed.

I went to the Green the Vaccines Rally.  In the cab back to the airport after the Rally I called my husband.  I said “Honey this really happened. I just stood with 8,000 parents with the same story. We’re not crazy.”

Then we began the work of healing Nick’s very sick little body and I felt in tune again both with him and with myself.

I don’t know how much of the damage done to Nick through his vaccine injury will be permanent. How much we will be able to help him manage over his life time with various interventions, and how much we might be able to fix. But I do know that he was injured by his vaccines.

I got to a place about two years ago where I would walk into a doctor’s office and say “No one believes me, but I think this kid was injured by his vaccines”.  I was usually met with either disavowal, or that blank face that always leaves me so curious. What are they really thinking? Do they think I’m another one of those wacky autism parents who spend too much time on the internet? Have they just shut down and stopped listening? Or would they like to say more but can’t?

Nick has a lot of medical problems so we have seen a fair number of specialists. I’m getting to the point now where I’m not willing to work with a doctor who isn’t open to the idea of vaccine injury. If I can’t put that out there, then what are we really treating? My hope is that over time we parents are educating the medical community. A doctor may disagree with me and I may choose not work with him. But perhaps the next mother comes in and has the same discussion, and the next and the next and sooner or later this physician has got to open their mind to the possibility. That’s why I think it is so important to speak up with doctors.

I think some of the greatest change is coming from some of the smallest and quietest conversations; at the bus stop, in the grocery store, on the playground – mother to mother. A few years back I used to get into these conversations and a parent would say something to me like “Well the vaccine/autism issue is closed, the science is in and they’ve proven there is no link”. This was so emotional for me that I would respond from the hip with some garbled comment that wasn’t all that effective and left me feeling really vulnerable.

I think the antidote to this is Mary and Louise’s book. Armed with solid facts we are able to respond in those moments with quick information. Because this topic is so emotional for all of us, to be able to respond with fact and science gives us a little intellectual distance.  Our breathing slows down and we can be rational and clear. Then we can walk away feeling effective.

It seems to me in Autism that everybody gets to say no to the Autism parent. Your pediatrician says “No, your child’s regression into Autism couldn’t possibly be the result of a vaccine and if it was I have zero liability”. The vaccine industry has also been granted zero liability. Your health insurance plan frequently denies imperative medical and behavioral treatment for your child. And the Vaccine Court refutes your case. Everybody gets to say “No”.

There is one thing,  that they cannot say no to…your right to tell the story of your child’s regression after vaccination as boldly and as frequently as you see fit. It belongs to you and it is yours to do with as you please. It is your human right and I would argue responsibility to tell your story.

It gets ugly when you get vocal. I think it’s only going to get uglier as the epic tragedy of what we are doing to children today, comes cracking open, and I truly believe it will. I think it’s going to become a brutal fight. There is just too much at stake. The other side has reverted to discrediting the speaker. My husband is in Public relations and he calls this the “Nuts and Sluts Approach”. They have worked tirelessly to portray Andrew Wakefield as a nut and Jenny McCarthy as a slut.  When we did the Autism Series on PBS and I mentioned that my son regressed after vaccination, several people scoured the internet and found whatever mud they could sling.

When bloggers or health writers get nasty, I feel a bit like Tommy Lee Jones in the Fugitive.  You know the scene where he captures Harrison Ford and Ford tries to explain that he didn’t kill his wife? Tommy Lee Jones says “I don’t care”. That’s how I feel. So they found out that I followed the Grateful Dead in college, I don’t care. Nothing that anyone could ever say about me is going to hurt as much as what has happened to my child.

By the way, I am so glad I lived it up back in the day because this Autism thing has been no party.

And it’s not like I embezzled millions of dollars from the CDC or was a heroin addict.

Sometimes I feel more effective as an activist than I do in healing Nick. And sometimes the opposite is true.  On a bad day for Autism politics  when stupid studies have come out such as the one that said that most children with Autism have moms with big boobs, or that Autism is due to tech geeks marrying women who don’t speak English because those women are less aware of their husband’s social quirks.  Anyway, on the lousy Autism politics days, my husband will say, “Look at Nick, he’s doing great, let’s keep going.”

The fact is…when we don’t tell the stories of what happened to our children…they win. Many of us are our children’s voices. You, like me, may not be able to explain the exact mechanism that caused your child to fall apart. But you do know what you saw as his first responder. We mustn’t let ourselves be talked out of our reality. We mustn’t let the psychic dissonance of not being believed make us doubtful or quiet. Like all of the survivors that came before us, we can be emboldened to tell our stories to make change.

I watched my child disintegrate after vaccination. I know what I saw. I know that it was real. When I tell his story I feel aligned with the truth, connected to my core, connected to myself as a powerful, nurturing mother worried about the health of all children.

I want to thank all of the parents who have been so vocal for many years on this issue.  I am so grateful to you. Without you I would be in the dark. A more experienced Autism mom told me early on “It will be the parents that will get you through this.” I had no idea at the time how fundamentally true this would be.

I’m behind every one of you as you embrace your human right to tell your child’s story of vaccine injury. And I promise you that I will keep speaking up.

~ Mama Mac (Alison MacNeil, LICSW)

Posted in Blogs by Thinking Moms' Revolution, Mama Mac TMR | 20 Comments

Abandoning Ship

 Today marks the 100th year anniversary of the maritime tragedy of the Titanic. She carried 2,224 passengers. 710 survivors made it onto lifeboats; 1,514 passengers perished in icy waters. Just days after the survivors arrived in New York, the US Senate launched an inquiry into the disaster and investigations were underway to pinpoint the cause and prevent a recurrence. All investigations reached the same conclusions: 1) the safety regulations regarding the number of lifeboats ships were required to carry were inadequate and 2) the captain had failed to heed warnings of impending danger and the collision was the direct result of entering dangerous waters at full speed. As a result of these inquiries, an International Ice Patrol was established that monitors the presence of icebergs in the North Atlantic and International Maritime Safety Regulations were put into place to ensure that more lifeboats were available and wireless equipment on passenger ships was monitored 24 hours a day. These safety measures are still in place today.

I wasn’t very far into our journey with Autism when I first heard the vaccine program referred to as “the unsinkable ship.” While this analogy is not new, it has always resonated with me. We are currently in a state of crisis.1 in 88 children (a very conservative estimate provided by our “friends” at the CDC) has a diagnosis of Autism. Our children are going down with the ship. I have to ask myself, “Where is the Inquiry? Where is the Investigation?” In April of 2000, hundreds of parents went to Washington. There were press conferences, congressional hearings, rallies. Twelve years later and NOTHING HAS CHANGED. The number just keeps going up; the excuses more and more ridiculous. Within DAYS of the Titanic tragedy, our government was putting policies in place to ensure the safety of boat passengers. It’s been more than a decade. There are no policies in place regarding vaccine safety. I, for one, am beginning to get impatient.

What has always impacted me the most about the Titanic is that the entire tragedy could have been averted if it had not been for the arrogance of the White Star Line, who declared the ship “virtually unsinkable” and of Captain Edward Smith, who ignored all warnings of danger. Despite a VAERS database full of adverse reactions (Vaccine Adverse Event Reporting Systemavailable to the public where parents and doctors can report adverse events following immunization), despite a 78% increase in Autism over the last 10 years, despite 51% of our children having a chronic illness (much of which can be directly linked to damaged immune systems) the CDC still refuses to acknowledge that there is even a possibility that their recommended vaccine schedule may have something to do with this crisis. Instead of focusing time and energy on safety studies, they are spending time and resources promoting every other possibility they can think of to explain the increase EXCEPT the ONE thing that parents and doctors of vaccine injured children are begging they explore. Captain Smith blew it. His ego cost the lives of over 1,500 people. However, he at least had the courage to take responsibility and go down with his ship. He didn’t jump on a lifeboat, blame the disaster on the fact that people couldn’t swim or keep themselves warm in frigid water. It wasn’t an increase in icebergs. I have to wonder if one of the reasons this entire Autism epidemic is being ignored is because none of the people driving this boat are willing to go down with the ship.

As the mother of a child with vaccine injury and autism, my perspective is a little less cerebral:

I am standing on a pier surrounded by thousands of onlookers, oblivious of impending doom. I see my friends and family and their beautiful children board the ship and wave from the deck. I frantically push my way through the crowd screaming warnings, “Get off the ship. It’s not safe. PLEASE get off the boat.” The crowd is loud; they can’t hear me. I know there aren’t enough lifeboats. I know the ship is going down. I know there will be casualties. My loved ones blow kisses as the confetti drops and the band plays on. With a crack of a bottle, the ship sets sail.

This is how it feels to me when I try to tell the people I love about vaccine damage. No matter what has happened to my child, no matter what my personal experience has taught me, I am only one tiny voice in a very loud crowd – a crowd that has only heard of the grandeur of this magnificent voyage. They believe they have boarded an unsinkable ship.

Those of us who have watched our children flail in icy waters want nothing more than to prevent this tragedy from happening to another child. We give warnings, we offer life vests, but still we have to fight the idea of the “unsinkable ship.” Until my son was injured by vaccines, I believe that my family and friends thought of me as an intelligent, rational Mom. Why is it that as soon as I suggest that my son was damaged, I am no longer that same intelligent, rational, thoughtful person? I suspect it is because I am only one person – one tiny voice on the shore – competing with Anderson Cooper, Matt Lauer, Nancy Snyderman, George Stephanopoulis, Paul Offitt, Seth Mnookin, Brian Deer, Tom Insel, Kathleen Sebelius and many other irresponsible voices in power who continue to insist the ship is unsinkable: “Buy your tickets people! The research has been done.”

I may be only one voice, but I am not alone. Together, we are many and we are LOUD. Together, we can make our voices heard and keep that ship from sailing. If enough of us are screaming from shore, people WILL get off that god-forsaken boat and wait to set sail when the research has been done that proves the boat is safe. I am not suggesting an end to the vaccine program any more than I am suggesting an end to boats. What I am suggesting is for the Captains to come clean and admit that there is no such thing as an “unsinkable ship” and to do the necessary research that shows who is most likely to drown. I refuse to believe at this point that the people who are driving the boat are unaware of the dangers. They just want to sell the tickets for the voyage. The only way to keep this ship from sinking is to never let it set sail. Stop buying the tickets.

I still hesitate to talk on a one-to-one basis too much about my own experience concerning vaccine injury. However, I am thankful that there are organizations like TACA, Generation Rescue, Autism One, NVIC, VaxTruth and Age of Autism that I can direct people to who are hesitant and want to make well informed decisions. Unfortunately, I didn’t get off the boat even though my gut told me there was a risk. I heard tiny whispers on the shore, but I believed the ship was unsinkable. As my son was drowning, other Thinking Moms helped me throw him a lifeline. My son was saved by listening not to the talking heads or cowardly captains, but to other parents who wanted to help. When the research is done and the boat is proven safe, I will be the first one on the shore yelling “Bon Voyage” and drinking champagne. Until then, I will stand on the pier with life preserver in hand and yell as loudly as I can, “GET OFF THE BOAT!”

~ Mountain Momma

This post is dedicated to all the lives lost in the Titanic tragedy, and for those who survived and became their voices. Please keep them in your hearts on this solemn day.

Posted in Blogs by Thinking Moms' Revolution, Mountain Mama TMR | 35 Comments

First Responders

Before I left for last year’s Autism One/ Generation Rescue Conference, as usual I prepared my schedule as to which lecture to attend. With 100 lectures to choose from within 5 days, I can only be in one place at one time. At times, I found that I ended up in the last place I would thought I’d be. At times I thought I took a wrong turn, but ultimately I found myself always in the right place in the right time.

On Thursday morning, I wandered into the wrong conference hall, there’s at least half a dozen lecture rooms there. Too jet lagged and dopey, it took me a good 20 minutes to realize I was in the wrong lecture. Instead of an Advocacy and Legal lecture, I eventually realized that I was surrounded by big burly American cops, some with guns strapped in their holsters. Even the few ladies present were in law enforcement uniforms bristling with weapons.

The speaker Dennis Debbaudt was lecturing on Autism, Law Enforcement and First Responders. Oops! I was in the wrong conference room. As I was about to leave, Dennis introduced his colleague Dr Stephen Shore. Dennis and Dr Shore gave further insights on novel methods of dealing with children and adults with Autism. To policemen, firemen and paramedics. And the lost sleepy mum from Malaysia. Many times I wanted to leave, to attend the lecture I originally planned for, but I was transfixed. I did leave at one point to attend my original lecture, but my heart wasn’t in it. Something told me I had to go back and hear what else Dennis and Stephen had to say.

The realization suddenly hit me how crucial this type of training is to our law enforcement. We hear more and more reports of children with autism getting lost and wandering incidents. And a few deaths too. My heart goes out to the families.

Back in the days, my eldest daughter Mei was a runner, when we take her out in public, she would just run and run. And wouldn’t stop or look back at us. Many times you would see me running at full tilt, screaming her name at the top of my lungs, chasing after an extremely fast little girl. She could spot a puddle from 30 feet away and off she would run. As you know, children with autism are attracted to water, too many times we hear reports of children with autism drowning. I have lost Mei a couple of times, it only takes 3 seconds for our attention to wander and for her to suddenly take off. She was very fast and silent. I was lucky that through some miracle, we found her.

We all have our ‘losing our kids’ stories. Who do we call when our children wander? Will they know effective means to communicate with our children, whose communications skills are profoundly affected in the first place.

“Research indicates that persons with developmental disabilities are approximately seven times more likely to come in contact with law enforcement professionals than others. Police and first response professionals will meet children and adults with autism in field situations.” Dennis Debbaudt

Dennis is an author, trainer and consultant with various public law enforcement authorities in the United States. He is also the proud father of an adult son diagnosed with autism. You can find out more about his works at Autism Risk Management

Dr Stephen Shore is a world authority on Autism. He is a professor at Adelphi University teaching special education. He is an author, consultant and frequent speaker at various Autism conferences worldwide on living with Autism, self-advocacy and many more. Dr Shore was diagnosed with autism and was pre-verbal until he was 4 years old. His parents were advised to institutionalise him. Please read more about him at AutismAsperger.net

Our police force will have to learn effective and safe methods when dealing with the ever increasing rate of children and adults diagnosed with Autism Spectrum Disorder. At 1 in 88 children diagnosed with autism, they’d better. Also, we need to start teaching our growing children safety issues, dealing with dangers and most importantly, for the law enforcement authorities to get appropriate training on safe and effective methods of communicating and dealing with citizens diagnosed with Autism. The ramifications are enormous, the need is high, our children are more vulnerable.

Autism awareness and autism action should not just extend only to parents and educators. The community should extend to other service personnel, not just the medical profession and welfare protection services. Police, fire department, first responders eg. traffic wardens, paramedics, security personnel and many others need this training too. Our children are more vulnerable than ever, as parents we can’t protect our children 24 hours. We rely on educators and health professionals; they are rising to the occasion for which I am immensely grateful. The next step will be to extend it to law enforcement and first responders.

Benefits of the Autism, Law Enforcement & Public Safety Training:
• Increases Officer and Citizen Safety
• Enhances Officer Communication and Response Skills
• Saves Valuable Time and Resources
• Avoids Litigation
• Builds Community Partnerships

Dennis and Stephen conducts First Responder trainings regularly. The law enforcement officers learn the most effective methods when dealing with a pre-verbal child or an adult with communications disorders. On dealing with autistic behaviors or people with Aspergers which may initially seem suspicious to security personnel. On the safest ways to restrain them should force be deemed necessary. To take into account of the physical and medical conditions of persons with Autism. How issues such as hypotonia, a condition of low-muscle tone commonly found in Autism should be highlighted.

In their years and experience, Dennis and Stephen shared how adults with autism have suffered serious medical conditions or even died because when being restrained, the person is usually handcuffed and made to lie face down on the ground. For a person with autism, being in such a position for too long can cause difficulty with breathing as their low muscle tone especially their lungs cannot cope with such pressure.

Dennis and Stephen also emphasized on the communication and language disability common among people with autism. Some may not understand the instructions or questions asked by a policeman. Some have echolalia, and may parrot back what the policeman is saying. The policeman in turn would probably equate that to either evasive and suspicious behavior. Or in the later case, think that the person is either being a smart ass, drunk or on drugs. In certain countries, these odd behaviors may be regarded as how a suspicious criminal or potential terrorist might behave. An encounter that started innocently can rapidly escalate into a far more serious outcome. All scary situations we would not wish to happen to our children. Law enforcement officials and first responders will have to learn how people with autism struggle with social cues and body language.

They also showed samples of On-Scene Response Cards, which helps responders on the field. It can also be used by children or adults with Autism, parents or caregivers as a useful tool to hand out.

This is a sample of an Autism and Law Enforcement Training Video presented by Dennis and Stephen at the  Autism One/ Generation Rescue Conference 2011.

Why should first responders be trained for this? Because autism now covers such a huge population. And the numbers are ever growing. The recent statistics published in America are 1 in 88 affected by Autism Spectrum Disorder.  The bottom line is, our children will grow up into adults.

Looking at the high prevalence rate, a first responder will encounter a person diagnosed with autism in the course of their work. There are many key concerns that us as parents should raise to first responders and law enforcement. What started as a wrong turn ended up into a huge realization in me as to the gap in our protective services. Later on over dinner with Dennis and Stephen, I gained a deeper sobering insight and perspective on further safety issues we need and should address.

Public Act 95-0171 (50 ILCS 705/7) requires all new officers to have autism training as part of their basic academy learning. This in-service trainer will help departments insure that all experienced officers have the same opportunity to learn about this topic.

Thank you to Dennis Debbaudt and Dr Stephen Shore for opening up my eyes. What I thought was a wrong turn, turned out to be the right place for me. The world would be a safer place for our children if only more first responders attended this training. Please contact your first responders ie. police, fire department and paramedics to find out if they have received up to date autism training.

~ Dragon Slayer

Posted in Blogs by Thinking Moms' Revolution, Dragon Slayer TMR | 5 Comments

Sainthood or Motherhood? One in the Same ♥

Recently, a friend of mine posted the following comment on the private board where many of the thinking moms and dad met. She wrote:

“Sorry, but I have to vent (and swear a little). What is pissing me off today is people acting like I am a saint and saying “I don’t know how you do it”. What pisses me off is that I am not a saint. I am a very flawed human being. I do what I do because no one else will do it and I have to do it. What makes me so mad is that they use it as an excuse to either not help or to do a really crappy job at helping (so I don’t ask them to help). Everything is dumped into my lap and they use the excuse that they couldn’t do what I do. I call bullshit.”

This post resonated with me, and I probably read it about eight times before I commented. When I did, I saw that I was not the only one it hit home with. Here is a sampling of the many comments that were posted in response:

.”BULLSHIT – stop complimenting and roll up your damn sleeves and do it right!!! You go, girl!!!!! “

· “Yep, yep yep. As if we have a choice, right? I hear ya too.”

· “You nailed it! They’re not complimenting, they’re manipulating. Lazy piece of grumble grumble…”

· “Such a great insight. They relieve their own guilt by saying “God chose her for a reason.” SUCKS!!!!”

· “I call DOUBLE BULLSHIT!! You should tell them, “If someone doesn’t step in and help me out around here, I’m not going to be able to do it forever and you WILL have to do what I do….so start doing!” We should form a union, then we could go on strike…at least for a few hours 😉 Hugs girl xo”

It was apparent that what my friend was feeling when she posted her vent, was a sentiment shared by many. Are we proud of our thoughts? Absolutely not! Reading them back makes some of us feel guilty – but in the moment – the one where sisterhood and support takes over, we chimed in so that our friend knew she was not alone. She was allowed to vent. She was allowed to feel overwhelmed and unsupported. It became our job to accompany her in this feeling and let her know that we were at her side. This is what we do for one another. We provide emotional support and give each other permission to speak our true feelings no matter how ugly they make us feel afterwards.

As the Thinking Mom who is affectionately known as “Saint”, the post struck a deep chord with me.  I stand among so many others who are fighting the good fight. What makes me worthy of such a strong and complimentary nickname? It certainly is not because I am perfect, because I am not. It is not because I do not have a potty mouth from time to time, because I do. It is not because I am without anger, because I have plenty.  Religious? I have my beliefs, but have to admit, that God has landed on my “list” a few times in recent history. I struggle with my faith and although I pray it can once again be as strong as it was, my belief system is definitely a work in progress. I am sure you’re wondering by now, as I often do, why I am called ‘Saint’?

I am just like all of you. I am a flawed human being. I do what I do because I have no one else to do it. I have people who often tell me they do not know how I do it. This does not make me unique? It makes me just like YOU! I may have entered this “game” under very different circumstances, but I am in it and playing by the same rules. You see, the reasons why Tex so graciously bequeathed me with this name are many, but the most important is because of my daughter. She came into my life when she was a little over four years old. The youngest of six children being raised by a heroin addict. Her oldest brother was one of my students so I knew a tiny bit about the family. Why, of all people was I asked to help out when the state decided to take the children into protective custody, I do not know – but they did – and I said yes. Granted, I thought it was a short term arrangement at first, but I said yes all the same, and kept saying yes to every extension until the permanence was inevitable.

I had no idea the extent of her disabilities. When I say no idea, I mean NO idea. Sure, she had delayed speech, and according to her brothers she had asthma, but the rest of it was either undiagnosed or unreported. Knowing what I know now, and learning that her birth mother never followed through with early intervention services, my guess is that DYFS (Division of Youth and Family Services) knew much more than they disclosed, but that is water under the bridge at this point, and in a way, I am glad. Had it all been documented correctly, I would never have been allowed to adopt her as she would have been classified as “medically fragile” requiring a home where the caretaker does not work full time. As a single mom, that was certainly not an option for me.

People often ask if I would have adopted her had I know the extent of her disabilities and deficits. How do you answer that question? Before I lived it, I would have figured I could handle (solve) anything. Now that I have lived it, AND fallen head over heels in love with her, how do you say “nah, had I known I would have run in the other direction”. It is ridiculous to even think such a thing. THAT hardly makes me a saint. Yes, she has a laundry list of genetic, medical, educational and emotional diagnoses. Yes, it would be a ton easier if I did not work full time. On average, after a full day of work and school I tote her to four or five appointments a week in three different counties on top of three days of swimming for lung development. But this does not make me a saint either. It just makes me her mom – you know, the one whose job it is to do what is best for her child. Ok – it also makes me tired, very tired, exhasted – but certainly not a saint.

I stand among many when I say, we do what we do because we love our children. We do not stop to question how it will get done, or why WE have to do it. We do it because we really have no choice. I think the frustration of most comes in when they have people close by who could help, but do not. I am not in that position since I live a minimum of 45 minutes from my closest relative. I have a few good friends who are willing to jump in when need be, but no family to dump on. I know I am in it alone and do not have time to stop and feel sorry for myself. Challenging? Yes. Impossible? NO! I can’t tell you how many people have suggested I slow down and not take as much on. I am not in perfect health myself and can’t deny that more sleep and less stress would be just what the doctor ordered. However, out of the many that have lectured me on taking better care of myself, do you want to take a guess on how many have offered to step in and take something off my plate so I can do so?

Does this mean you are supposed to stop noticing how much a thinking mom or dad gets done in a day? Stop complimenting? Stop acknowledging? No Way!!!! Let’s face it – we are human too and a compliment from time to time can’t hurt. So please, while those compliments or caring words are spilling from your lips, don’t forget to also ask what you can do to help – AND MEAN IT. To one mom it might be to learn what the dietary restrictions for her family are and prepare a meal of two for the family. Another mom may just need someone she trusts to watch her non-verbal child so she can attend a school function for her neuro-typical child. Someone else might simply need an errand run or dishes done. I can only speak for myself when I say it is sometimes impossible to get it all done and to have someone do something as simple as put out my garbage cans, or run to the dry cleaners/post office for me would be a gift. We really are extremely easy to please and highly appreciative creatures.  A small deed goes a very, very long way. Try it– you’ll see 🙂

With Love,

~ Saint

Posted in Blogs by Thinking Moms' Revolution, Uncategorized | 30 Comments

Thinkers and the Media

The Media. Yeah, we’ve been burned by them, we know where the revenue comes from. We KNOW what the mainstream media is all about. Me, I figured it out when I was about 22 and I anchored my local hometown news on a cable access channel. It was all pretty simple stuff until one day, there was a MURDER at a hotel. We NEVER saw murder. It was like Christmas morning (awful, right?). Sorry, Mr. Victim, but “if it bleeds, it leads”… or so I thought. The owner/manager of the cable company hunted me down immediately (up until then, he might have measured up my makeup application and bra size from a distance, but that’s it). “You can’t report on the murder.” And he walked away. It wasn’t long before it occurred to me…the owner of the hotel was his best friend. Squashed.

Fast forward a month or so, and it was Arbor Day. If you remember this, you are dating yourself, too, but the WSJ had just had a front page story on McDonald’s and their use of styrofoam as packaging for their “food”. It was questionably toxic and they were under fire. PR wunderboys went scurrying and before I knew it, we were at the local McDonald’s ALL DAY with our video cameras (the ones that held a whole VCR tape!) while they gave away free trees to every patron. Arbor Day. Trees. Ecologically sound. Damage control. ALL DAY. Local family, also in the hotel/cable/hometown crowd, owned the McDonald’s. Light bulb. If this is how it is in a little town, could it also be this way at CNN? Yep! I quit. I ran.

You could count 22 Pharma ads during an Oprah show…we have little ammo to combat that. But, as Thinkers, we have to find ways to get our story out there, and local media is the place to do it.

All of us have local media that we need to approach in our towns and cities. Newspapers and magazines, too. Use them! Get in there! Send emails to the addresses you find on their websites, call newsrooms and introduce yourself. Make yourself the “go-to” in your town for all things autism. Tell them if you can’t speak to the specific subject, you will find someone who can (because let’s be honest, there are a million facets on this autism gem and some of them are more complicated than nuclear physics). Autism Mom and Media expert Rebecca Estepp says it is “critical that as many parents speak out as possible”. She couldn’t be more spot on. You say to yourself, “My little hometown news won’t reach anyone! It’s pointless!” Well hear this: Once I woke up (after we had been on the local 11pm news) to an email from a friend. She said the story had been forwarded to her from AUSTRALIA! In less than 12 hours!

Let’s learn more about this way to be a REVOLUTIONARY! Let’s change the Face of Autism! Tell The World what it’s like to be the 1 in 88! (OK, yeah, it’s more than that…hard to explain in a soundbite, though, isn’t it!?) One GREAT way to learn is from our friend Rebecca, who beats the streets (ok, the World of Media and Social Networking) who will be holding a rountable to teach us more about how to do it at AutismOne in Chicago on Thursday May 24th at 3….

http://www.autismone.org/content/roundtable-how-use-local-media-influence-public-opinion-shape-debate-autism

Check out her latest from FoxNews San Diego:

http://www.fox5sandiego.com/videogallery/69112200/News/Report:-1-In-88-Kids-Have-Autism

OK so here’s what I got my local news to do for us last week when the 1 in 88 numbers came out. Note the bad accent, the bad outfit, the bad hair flip (GET OVER YOURSELVES…it’s for the CAUSE!) Read the text, the video is a little messed up….

http://www2.wsav.com/news/2012/apr/02/savannah-moms-involvement-autism-awareness-movemen-ar-3529919/

Now GO!!!! And let the Thinking Moms know when you get a bite! Make sure you spread it far and wide! Don’t let anyone make you think you are out for your own gain or stardom! Give us YOUR secrets! Just DO IT!!!

Love to ALL the Thinking Moms and Dads,

Blaze

Posted in Blogs by Thinking Moms' Revolution, Uncategorized | 5 Comments

Gut Instinct

I rely on my instincts…my gut, the little voice in my head, whatever you want to call it.  I’ve avoided traffic accidents because of it…like an inner GPS making me switch lanes for no reason.  In childhood during a kickball game as team captain I told someone to stand in an odd spot.  The ball was kicked right to them and we got the winning out.  In college, I knew my friend was in major trouble one night only to learn later he was in a car accident.  In a bank of eight elevators, I can press the up button and walk to the one that will open first every time.  Back when we had tape players in our cars, I could rewind and stop exactly at the beginning of a song without fail.  Talented, I know 😉

One Saturday morning when I was six months pregnant with our twins, we walked into Whole Foods to buy groceries.  Because, of course, we were eating organic because I was pregnant.  In the café there was a nurse giving flu shots.  My OB/GYN mentioned a flu shot was on the recommended schedule for pregnant women at our last visit, but he did not give them in-office.

We wanted to keep these babies safe.  I mean, our 18-month-old had just started daycare and who-only-knows what he would be bringing home from school during the winter, right?  So we marched on over to the café to get our dose of protection.  When it was my turn to sit in the chair I got a bad feeling.  The kind I always pay attention to.  All of a sudden I wondered—Was there that thing, thimerisol or whatever, in this?  I started to question the nurse.  I said “Is this safe?”  “Is there that thimerisol thing in this?”  She shushed me and jabbed my arm so quickly I didn’t have time to protest while saying “Everyone knows they are perfectly safe.”  I walked out with a nagging feeling that something had gone wrong.  The feeling never went away and hounded me through the rest of the pregnancy.

Fast forward to 2011, past Harry’s complete set of vaccinations through 18 months, encephalopathy after the DTaP, chronic constipation, head banging, drooling, eating his winter wardrobe, screaming non-stop, through biomed interventions and finally into classical homeopathy.  By that time we were getting great results including the complete elimination of clostridia with a homeopath, but I wanted more.  I was reading about CEASE and clearing the imprint of vaccines.  Tinus Smit’s book featured prominently on my nightstand.  It made perfect sense to me.  My gut was SCREAMING for this. But our homeopath didn’t support it.  So much as I loved working with him; we found an expert trained in CEASE and dove in.

Some CEASE practitioners work backwards from the last toxic insult.  I had such a strong nagging feeling about clearing that flu shot I’d had that our new homeopath agreed to start there–even though Harry hadn’t directly had it as it had been given to me while pregnant.

CEASE is not for the faint of heart, though I suppose, neither is Autism.  We progressed through 4 potencies of the 2007 Flu shot and Harry had reactions at all levels.  30c, rashes—detox rashes—that traveled all over his body.  Red splotchy, purple dots, raised and flat.  We couldn’t believe a few granules of a sugar pill could do that.  We moved on to the 200c potency and the rashes stopped but he got the hiccups non-stop for two weeks.  It was almost like revisiting the reflux he had from about 4 months till 19 months when we finally stopped dairy. And then we moved to the 1M potency and stayed there, not for the 2 week/4 dose typical interval, but for 7 full weeks.  14 doses of that potency.  Rash after rash after rash.  And with each dose, we saw gains.  Auditory processing delay decreased dramatically.  Generally much more with it.  Signing (still preverbal) increased.  He grew and gained weight.  He attempted to sing, stopping when the music stopped.  He could jump higher.  He was more coordinated.  And more insistent in getting what he wanted.  We finished up the 10M dose of the clear and saw rashes as well after each dose, but nothing like the 1M potency.  This taught me two things….the first was that doing a nosode in a 30c potency might not fully clear the insult and that CEASE was the right (although not only) path for us.  The second was that I would continue to assist our homeopath in picking what we cleared next by listening to my gut, while I relied on him to pick the supporting classical remedies.

We just finished clearing Hep B, and saw more nice gains after this clear including being able to pucker his lips for a kiss <3, and joining in with friends at school independently, and are now moving on to clearing Tylenol & Tylenol PM—which incidentally I took like candy while pregnant, idiot that I was, because I was told it was perfectly safe (and of course Harry got Tylenol before every vaccine so he wasn’t in pain-lovely, I know).  Excited to see what clearing them will do to Harry’s glutathione levels.   And I know what comes next after that one too.

I do a lot of mentoring with newly diagnosed families.  The one thing I find myself repeating is TRUST YOUR GUT.  You will know if a treatment if right for your child or not…follow your instinct.  I sometimes wonder—what if I had been able to pull my arm away that day?  Would the full course of vaccines he did receive, coupled with multiple antibiotics, sedation for ear tubes and everything else we threw at him have done him in anyway?  Or did that shot, at that moment, set him up for what followed?  I will never know for sure, but my bet is a resounding yes.

Incidentally, TMR does not endorse any particular kind of treatment.  I am just giving my experience with this one.

Love,

Goddess

Posted in Blogs by Thinking Moms' Revolution, Uncategorized | 20 Comments

A Personal Autism Awareness

Lately, I’ve been reflecting on my very own Autism Awareness. You’d think by now, as an autism mom that’s been in the mix for 5 years post diagnosis and 5 years “in denial” or pre-diagnosis, I would have had enough of awareness by now. It’s true – I’m aware. Painfully aware.  During the month of April you can find me randomly grumbling, ‘who is not aware of autism by now’? The proportion of 1 in 88 tends to level the playing field when it comes to who knows someone touched by autism. But my awareness – most autism moms’ awareness – did not happen overnight. It was a process that evolved over the years.

First thing you become aware of is that doctors don’t know everything. Really – who DOES know everything? Nobody – but for some reason many of us have been raised to blindly listen to that person wearing the white coat (which has caused me to buy some pretty awful colors from the Clinique counter – but that is completely different story). The “doctor is not automatically correct” lesson is one I needed to keep re-learning over and over and over until I FINALLY got it. It’s a complete paradigm shift. With that paradigm shift comes some hard realities. The biggest being “you are on your own”. Seriously – you need to sift through those exhilarating PubMed articles yourself at midnight. Guess what I am also AWARE of? Most doctors do not want to read any PubMed articles you pass onto them that may be able to answer some questions about your child’s health. Oops.

But let’s not pick on poor doctors. It’s not limited just to them. It goes beyond the exam room and extends to therapists, teachers, phlebotomists, etc. And every single time you realize that an important person in your life does not know everything there is to know on the subject which you count on them to know everything about ~~ well, that kind of screws with how you get things done. More and more falls on your shoulders.  But guess what you find out about yourself…

You become AWARE that YOU know NOTHING. Yep, that’s the second thing you learn. Hey, buck up. This just means everything you USED to know for certain is almost worthless. As I walk down this road of autism awareness I come to terms with all those facts I held sacred and true, are no longer so. The air isn’t getting cleaner? Flouride isn’t necessarily good for you? Ketchup isn’t just tomatoes? Our government isn’t protecting us? That Rhogam shot was preserved with thimerosal? Profits are more important that safety? Money buys votes. Companies rule our nation. And as your perception of the basics in life shift, your footing becomes unsure. Literally, your world is rocked.

But here’s the third thing you become aware of – you ARE the expert on something. Your family. Your children. Yourself. And professionals – not all, but many – take glee in pointing out that your knowledge is anecdotal. Not valuable. Not important. An anomaly. As I speak up for the value of my expertise, I am aware of how my feelings evolved during these interactions. At first, I felt foolish that I thought I understood something complicated, like biology or science. Then I felt angry that they didn’t listen to me, even when it was clear I understood the nuances of the symptoms and the science quite well. Now, I couldn’t care less if they believe or understand me. If you don’t listen to, believe or understand me – tell me now. I rather have your quick no than your long maybe. I will leave – walk on – and find someone that will listen, believe and work to understand and help me.

Finally, I’m aware that autism makes people uncomfortable – that discomfort goes beyond not knowing how to communicate and behave with our kids. It wakes up their awareness – awareness that something is very wrong in the world; that these kids are sick and in pain; that their family could be next.

Yes, we are aware. You’d have to live under a rock to not be aware of autism.

Please stop spending millions of walk-a-thon dollars every year so people can wear blue on April 2 and help people become aware of some important facts about Autism.

Make people aware that:

Autism can kill

Autism can be prevented

Autism is neurobiological

Autism can bankrupt a family

Autism can bankrupt a nation when 1 in 88 grows up and needs “forever care”

Most importantly:

Autism can be reversed

Spread hope – it’s way more infectious than Hepatitis B.

And Merck hasn’t made a vaccine for it.

Yet  😉

~LuvBug

Posted in Blogs by Thinking Moms' Revolution, Uncategorized | 12 Comments

The Blue Hurricane

Blue.  Everywhere blue.  Buildings downtown.  T-Shirts.  Toys-R-Us and every chain restaurant in you neighborhood. Everyone is Lighting It Up Blue for Autism.  ”Care to donate for autism research?”  Your waitress with shiny blue salon manicured nails asks. “You know autism is just a terrible disease. Those poor kids.  You wanna help the kids, right?” She bats her blue mascaraed lashes.

During this month, the powers that be ask us to simply be aware of autism.  Don’t do anything.  Well, if you’ve got some cash to donate for “research”, you can certainly fork that over, but don’t ask us who it’s going to or what we are going to do with it. You probably wouldn’t understand it anyway.  Autism science is super complex mom and dad.  You’ve got your hands full with junior anyway.  Leave the science to the experts.  Just keep the faith that the money you give us is going to help the kids.  Probably not this generation, the previous, or the next even…but someday maybe someone will be helped.  Perhaps.  Possibly.

This, in a nutshell, is the Light It Up Blue Campaign.  Celebrities, fanfare.  Lots and lots of big corporate sponsors.  Parties.  All in the name of helping the children.

 

 

Let us have a metaphorical look at how the real autism community (i.e. activists and parents who know what happened to their kids) feel about LIUB.

Imagine your life is thrust into shambles by a hurricane. Yes, you live in an area where hurricanes have happened before.  But never to you.  To other folks you know, sure. Never you though. Imagine, you’ve lost your home, your family, and you’ve spent the last two days pinned under the wreckage formerly known as your neighbor’s garage, screaming for help (for many of us autism parents this is a very true word picture). Finally, under all that detritus, you hear muffled voices, people working toward you.  All is not lost.  Someone is here to help.  You are starved, dehydrated, and your body is broken in too many place to even begin taking inventory. The pain is unbearable. You cannot move or speak.

“They really did a nice job with the swags over there.”

“Yeah, so vibrant.  I love the way the blue shimmers when the light hits it just the right way!” You hear someone respond to the comment.

“I heard there’s going to be a champagne toast at the big brunch today to celebrate all our hard work.  I guess even the White House is going to  put up blue light bulbs or something?  It’s a really big deal.”

You must be hallucinating.  Either that or you are crossing over.  Is one of these jokers your spirit guide or is there seriously a party going on out there?

Finally several  slabs of wet, damaged siding give way, and you see a glimpse of the blue the voices are talking about. Blankets of  decadent azure fabric cover the carnage.  Homes literally turned upside down are swathed in yards of the stuff.  Are all those swags made of blue velvet? Whatever it is, it’s everywhere.  Floating on the snake, bile and bacteria infested waters.  Hanging from the tops of damaged trees.  Some of it appears to be covering bodies. A large tent made of the stuff has a sign that explains everything, “Celebrate Hurricane Awareness Month!”

A worker wearing a cotton version of the same blue lunges toward you.  He seems downright affable. “We got another one here!” The first voice you heard belongs to him. His colleague yells back, “Alive?”

“Not sure.”  He responds.  He leans in to check your vitals when an impressive looking person catches his eye.

“Hey Mr. Pharma!  Good to see you!” he yells to the very important looking man who is wearing the same blue shirt, only his is obscured under a silk Tom Ford suit.  You can tell it’s custom.  ”Nice work on the buttons! You know the message really reaches the people!”  Mr. Pharma squints and nods in the workers direction.  He has a clipboard an iPhone and an entourage.  They too are clad in blue tops with suit coats and executive bottoms. Mr. Pharma waves but doesn’t bother looking at the worker. He’s getting ready to motivate his people. “Now, this charity gave us $500,000, he says, pointing to a name on his clipboard.  That’s great, but I know you guys can do better.  We are saving lives here.  Children. Families.  It’s about the people and you need to remember that.  I only put my name on things I can really get behind. So, when you think you can’t possibly ask for another dime look around you.  Look at all these signs, swags, t-shirts and buttons.  Blue is the color of natural disaster.  It’s like the whole world thinks, blue – hurricane! You good people, you did this.  Now, keep it up.  I am working on some very important research with some bigwigs that will help us identify why so many people died from this particular hurricane.  It is very complex, super-science-y, but I will dumb it down for you. My investor, I mean, scientist friends and I are trying to ascertain if the people who died directly as a result of this hurricane had a genetic predisposition to death by natural disaster.  If they did (which we all believe wholeheartedly our research will reveal) how do we identify the Natural Disaster Gene?  This is going to be huge guys. Everybody who’s anybody wants in on this research!  We need millions.  So, get to work!”

http://www.autismspeaks.org/about-us/press-releases/research-academic-industry-drug-discovery

After receiving their marching orders the entourage quickly disperses.  Punching frantically into their handheld devices many of them step in puddles of filth. One executive lands face down in some bacteria laden muck. She tripped over a body.  Like the now famed Honey Badger, she pops back up undaunted, straightens her soiled skirt and gets right back to her iphone. She has blood, mud, and excrement all over her face. With a smile in her voice she reaches her intended party and inquires about monies promised to her for this very worthy cause. You think the body she tripped over may have been the little boy who delivers your morning paper.  It’s hard to tell because death distorts things.  The voices of the other victims are now in earshot.  You hear babies screaming, parents crying, grandparents wailing. So many injuries that could have been avoided if only they’d have listened to the warnings. You hear a mom plead as she balances a toddler on her hip, “Our home has been destroyed. I can’t find my husband.  We have nowhere to go.”  A smiley worker-bee responds. “No worries!  We’ve thought of everything, hon.”  He ushers her into a damp blue tent with a dirt floor.  ”You guys can stay here!  Put these on, K?  I got one for your little peanut too!”  He hands her two blue buttons that have a big red line through a frowny face with the caption – Celebrate National Hurricane Awareness Month With A Frown Turned Upside Down! A doctor enters as soon as the voluteer departs.  He’s carrying syringes.  The mom asks, “What are those for?”  He looks at her and her child and says, “You’ve been exposed to countless bacteria. You have several deep cuts. You are both going to need tetanus shots.  They come with the added benefit of coverage against diptheria and pertussis. He pricks them both. A teenager and his father enter the moldy tent.  The boy is sweating, bleeding profusely from his midsection.  His breath is shallow and his language, incoherent.  His father, whom he leans into for support, speaks on his behalf.  ”Doctor, please can you help my son?  Glass from a window is lodged in his stomach and we can’t stop the bleeding.”

“Oh my Goodness!”  The doctor proclaims.  Yes, lay him down on the floor here and I”ll be back with my medical bag. He returns with some rubbing alcohol and a band aid.  The band aid is impressive.  It’s blue with the NHAM acronym emblazoned in bright gold letters across it.  He can’t remove the glass.  He doesn’t know how.  So, he just puts the band aid over it.  ”There you go son!  Good as new!  Here’s a little something to keep you motivated!”  He hands him the same blue button the volunteer gave to the mother earlier. The doctor musses the boys hair and tells the mom to see her physician if there is any swelling at the injection site. All the color drains from the teenagers face and he dies in his father’s arms as the doctor exits the tent.  ”Good luck you guys!  No need to thank me! Helping people is my passion!”  The doc checks his watch and heads to the other tent. The decadent one, with the pleated blue velvet, candles, porcelain place-settings and chandeliers hung by party planners.  He is hungry and looking forward to today’s spread.

None of this is making sense, you think.  This is all so horrible.  Is it really happening?  Is anyone going to tend to you? Afterall, you are dying, too.

Just as the worker who dug you out turns back to help you a hysterical man approaches him.  ”Raw sewage!  It’s everywhere! I’m housing survivors! Children! I have a supply of uncontaminated food and water that could  last for days if we can keep the sewage at bay. Please, help me! These people have nowhere to go and I can keep them alive until help arrives!”  ”No problem. Calm down.” Your worker responds.  He digs into a sack he has by his side and hands the man a roll of paper towel and a Hefty garbage bag.  ”It’s two ply for tough jobs. There you go, Buddy!”

He looks down at you.  He seems annoyed.  It’s been a long day for him, you guess. But still, he’s got you now.  Everything is going to be okay.  Just as he reaches for your pulse someone yells out to him. “Hey! Come on dude! It’s time to celebrate National Hurricane Awareness Month!”

You can’t talk.  You can’t move.  You can’t communicate. You’re just another body.  He looks at you.  Who’s going to know?  No one, he thinks. Just another body in the rubble among thousands.  What’s one life when champagne and celebrity await?

He washes up and arrives just in time for Mr. Pharma’s first toast.  ”Thank you all so much for you commitment to saving the lives of these poor unfortunate people during Hurricane Awareness Month.  We don’t know why these things happen.  Why all these poor people have to suffer so.  No one ever knows why.  We could all drive ourselves nuts asking why, right? Well! So many have been saved because of your hard work hanging those blue swags, wearing those t-shirts and passing out those pins. Pat yourselves on the backs, enjoy the drinks created by our expert mixologists, and go take a picture with one of the many celebrities on our bank roll.  Remember, Hurricanes are dangerous.  Spread awareness.”  Clink.

http://lightitupblueaspen.org/wp-content/uploads/2011/12/LIUB-PR-1-Final.pdf

~ The Rev

Posted in Blogs by Thinking Moms' Revolution, Uncategorized | 9 Comments

What is Autism?

“Mom, what is Autism?”

This was the question I got from my 7-year-old daughter just recently.  At that moment, I was more prepared to tell her where babies come from.  My husband and I have always made it a point to talk about her brother’s challenges and answer all of her questions.  She knows he has seizures.  She knows he has diabetes.  Medical stuff is easy to explain. Explaining her brother’s autism has been a little more difficult. 

Her life began watching her brother in therapy.  She was a newborn baby at the time when Early Intervention started.  The relentless flow of ABA teachers, speech therapists, physical therapists and occupational therapists.  When she was old enough to walk, she would stand at the baby gate while her brother was with his ABA teacher and protest (quite loudly) that she wanted to be at that little table doing exactly what he was doing.  Even at 1 years old, she was protective and supportive of her brother.  She learned sign language along with him and at 8 months old, she knew about 10 signs.  

When it was time for her brother to go to preschool, she came with me for the 45 minute drive to the school especially for children with autism.  At age 4, when she asked me why her brother doesn’t talk like everyone else’s brothers, we tried to explain it to her the best way we could so she could understand at her level.  She told us it made her sad, but he would talk one day, she was sure of it.  I told her that we were too.  This was followed by a big hug and kiss and she seemed content with the answers.  But kids are much more inquisitive and intuitive than we give them credit for sometimes.  Since she turned 7 this past year, she’s become very wise in her young age and our simple answers just aren’t cutting it anymore.

 “Mom, what is Autism?”

I could answer that question in a heartbeat if I’m talking to an adult.  Vaccine damage.  Encephalitis. Toxic overload.  Yeast, bacteria, viruses all creating havoc in the body.  Environmental toxins.  Autoimmune dysfunction. Are these things I can tell a 7-year-old?  How much will she understand?  She knows he can’t talk because of the shots he got when he was a baby.  She understands why we can’t go to the movies because it’s too loud for him.  She’s okay with the fact that we have to leave the park if he has a meldown. Her entire life has revolved around Autism, the good and the bad.

So I asked her, “What do you think Autism is?”  “I think it’s brain damage.”  Me:  “Why do you think that?”  “Because when we go to the doctor (Neurologist) he talks about his brain all the time and that it doesn’t work right.” In her brother’s case, this is part of his autism diagnosis. 

Seizures have had a profound effect on his neurologic development.  On every vaccine insert listed as a possible side effect is seizures.  That should give any parent a reason for concern.  If you read the paper given to you by your pediatrician, this side effect is written in a very comforting way to lull you into a false sense of security.  It states that having a seizure is very rare and there’s a good chance statistically that this will never happen to your child.  But what if it does?  This is taken directly from the CDC website regarding only febrile seizures:   

 “Although febrile seizures can be frightening for the child’s caregivers, MOST are harmless. The MAJORITY of children who have febrile seizures recover quickly and have no lasting effects.”

 Let those 2 words sink in.  MostMajority.  Why are we so willing as a society to play Russian Roulette with our children’s neurological development?  I know there are people who will defend the vaccines and claim that they keep communicable diseases under control.  I get that.  Who wants their child to die from the measles?  But you have to ask yourself the question–at what cost?  What about the infants and children who are not lucky enough to be part of the MOST or MAJORITY group?  Jenny McCarthy details in her book about her son going into cardiac arrest during a seizure.  It’s maddening how these side effects are not taken more seriously.  Would you be so willing to vaccinate your child if you knew it could potentially lead to seizures and possibly cardiac arrest?  Why are pediatricians so angry when we as parents ask questions?

I can tell you from first hand experience, seeing your child turn blue while having a convulsion is more than “frightening.”  It will bring you to your knees.  It will change your life forever.  It keeps me up at night, checking on my son every few hours.  Looking back, my son had his first seizure at 9 months old, but at the time I didn’t know it was a seizure.  He was crying in his crib, extremely pale and had thrown up.  He slept so soundly for hours afterwards.  I chalked it up to him having a virus and called the doctor who confirmed the same thing.  What I didn’t know is that was the postictal phase after having a seizure.  He had his first tonic-clonic seizure a few years later.  Talking with the neurologist, it became apparent to me that my son was having absence seizures for a long time without me knowing these were actually seizures.  My son’s lack of speech should have been the biggest factor in pursuing an EEG to determine if he was having seizures.  My pediatrician never recommended it.

It’s estimated that epilepsy rates among those with autism range from 20 to 40 percent, with the highest rates among those most severely impaired by autism.  I believe the number is much higher.  I wouldn’t have known my son was actually having seizures had he not had a tonic-clonic seizure that was impossible to miss.  The good news is that with proper treatment, many children are recovering skills that were lost and language that had disappeared, all due to undiagnosed seizures.  I urge all parents to pursue an EEG if your child is diagnosed with autism, especially if they have speech delays.  It could be a piece of the recovery puzzle for your child.  For my son, we’ve seen more skills emerge as we achieve better seizure control.  Seek out practitioners who understand the autism and seizure connection.  I’m excited to go to Autism One this year and learn as much as I can from the presentations on seizure disorders. 

My daughter asked me one last question, “Mom, can Autism be healed?”  I told her that I think it can be and we’re gonna try really, really hard and never give up.  If you reach for the stars and only make it halfway, you’re still halfway from where you started.  No matter what level of healing we can achieve, it will certainly make a positive difference in her brother’s life. 

For more information about seizures and autism here is a great link from our friends at TACA: 

http://www.tacanow.org/family-resources/seizures/

 ~Savage

 P.S.  I wish everyone a wonderful Easter and Passover Holiday.  God bless you and your families on this special day!

Posted in Blogs by Thinking Moms' Revolution, Savage TMR | 31 Comments