Bleach is For Cleaning, Not Curing.

When The Boy was first diagnosed with autism, I really believed he could be "fixed."   I wanted to make him normal.  (I think most parents go through that phase.)  I tried diets, I researched and read different books.  And for a hot second, that damn Jenny McCarthy made me feel guilty for not taking The Boy to a DAN! doctor.  

For many parents, it's about trial and error.  We are willing to try (almost) anything and everything if it means helping our kid.

But when will a parent draw the line? 

I know where I would draw that line.  I'll get back to that... 

Over the last few weeks, this article about the Autism One conference and Kerri Rivera (Director of Autism02 - Hyperbaric Clinic in Puerto Villarta, Mexico) has been making its way across the blogosphere.

And it's been making its way for good reason. Rivera claims that she has helped children recover from autism with something called Miracle Mineral Solution (MMS). 

So what is this little miracle?  

...in essence, [MMS,] is industrial strength bleach, 28% sodium chlorite in distilled water. It is frequently diluted in acidic juices, such as orange juice, resulting in the formation of chlorine dioxide, which is, as the FDA characterized it, “a potent bleach used for stripping textiles and industrial water treatment.”

And Rivera's treatment involves giving autistic children MMS via mouth or enema.  She also suggests periodically increasing the dosage and bathing in the solution.  (The article goes into great detail and provides video of Rivera detailing the process.)

In a 2010 CNN article, the FDA warns against usage of the solution as they have "received numerous reports of serious side effects including nausea, vomiting, diarrhea, and life threatening low-blood pressure from dehydration."  Though Rivera dismisses diarrhea as "OK as long as it's detox diarrhea.'" 

So where would I draw the line?  Hmmmm somewhere around bleach and enema.  Because it sounds...I don't know?  SADISTIC, CRUEL and Motha EFFIN CRAZY!  

For me, the worst part about this whole thing is where Rivera started her clinic - in Puerto Vallarte, Mexico.  While Puerto Vallarte may be a fab vacation hot spot, it's not all resorts and margaritas for the people who live there.  

Although Puerto Vallarta is probably one of the best places to live in Mexico, some areas are still riddled with poverty and unsanitary conditions. Outside of the strip of resorts, there is an overwhelming amount of people living in very poor conditions.  A large part of the population here live with unpaved roads and lack of infrastructure. Rural areas and surrounding towns are lined with miles of shanties where many live without proper sewage systems and clean water supply. Of the 45,000 year round nations living in PV, 10% do not have a potable water supply, 8% do not have connections to a sewer/septic system, and 4% do not have electricity. Although the city has made impressive strides to improve the quality of life for their people, they still have a long way to go. For many, life is still a constant struggle, and it’s seen everywhere, even on the Malecon where sad looking beggars plead with a small cup as the tourists walk by. Even for those working, they heavily rely on seasonal tourism to keep a steady job, and the daily minimum wage is about 57 pesos, which is about $5 US a day! [source - this passage is from a personal blog, it is her description of life while living in Mexico]

If parents complain about the system and services in the United States, I can only imagine how scarce resources are in Mexico.  I can understand how MMS can truly seem like a miracle to a parent in Mexico.  Because when you have a child with autism, a parent is willing to try anything you think may work.  And when resources are limited or non-existant or completely out of your financial reach, the line may be harder to draw.  

But MMS isn't exactly the option I'd want them to have.  And sadly, for many low income impoverished families - MMS is probably the only option they have since Rivera uses "fundraising efforts and donations the clinic offers treatment for children of low income families at no charge."

There is so much stigma that surrounds autism - especially within the Latino community.  We don't talk about.  We're ashamed of it.  We're scared of it.  We dismiss it.  And now Rivera- claims to be able to "cure" it.  As if autism is something that could be treated with un remedio casero (a home remedy).  In my opinion, that's a dangerous message to send. 

I want to be supportive of Kerri Rivera for starting a much needed autism non profit in Mexico, for raising awareness, for empowering families. 

And I want to believe that Rivera wants to really help and that she's not exploiting poor children and using them as guinea pigs to gain fame in the States. 

But to me, all Rivera is doing is, creating a false sense of hope for many families.  And she's putting children at risk.  

I want those families in Puerta Vallarta to know they have other options.  How do we do that?          

       

  

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Emily Willingham has started this petition below.  Please sign it.   

 

http://www.change.org/petitions/no-bleach-enemas-to-cure-autism-in-children

 

What Do You Do When Your Child's Special Education Teacher/Aide is The Bully?

This is going to be a short post because I want you to go right to the video - it's about 15 minutes long.

NO PARENT should have to experience this.  And NO child - certainly NO SPECIAL NEEDS child should have to endure such humiliation and torment by a teacher or aide.  These are the people we trust will take care of our children. 

  

What kind of special education teacher/aide calls a 10 year old autistic boy a bastard? 

What kind of special education teacher/aide openly discusses drinking, parents and complaining about their husbands?

This New Jersey father, Stu Chaifetz, - so desperate to know what was going on with his son, Akian, sent him to school with a wire.  And what Stu discovered...was appalling and disgraceful.     

Watch the video.  Share it on Facebook and/or twitter.  Email it to friends and family.  And then - sign this petition --> http://www.hnva.net/teacherbully/

As a mother to an autistic child - Norrin cannot tell me about his day.  He cannot tell me when someone hurts him.  He does not have the capacity to speak up when he is wronged.  I am his voice.

And Stu, is Akian's voice.  Please listen.  

A Life Worth Living. A Life Worth Saving.

Just when I think I've seen, heard and read it all, I come across something that makes me say "Are you kidding me?"  Except somewhere between "you" and "kidding" is the big F-Bomb. 

On January 10, 2012 Chrissy Rivera walked into the Children's Hospital of Philadelphia.  And she heard something that no mother should have to hear. Chrissy's 3 year old daughter, Amelia Rivera, needs a kidney transplant.  However Amelia's doctor  states: 

"[Amelia]—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays..."

How can a doctor determine a child's "quality of life" based on their cognitive disability?

There are several tests where The Boy falls in the Intellectual Disability range (formerly  mental retardation) range.  And my sister, falls under the same disability.  Well, chances are if you are reading this, you've read about The Boy before. (In case you haven't, read this first) But my sister - is in her 20s.  She works part time at a furniture store and goes to the gym 5 days a week.  She's a fantastic artist and has quite the sassy personality.   And I'll be damned if anyone questions their quality of life.

I can't even imagine what this family must be going through.  But I know how this story makes me feel.  I feel angry.  And disgusted.  But mostly disappointed. 

Because this doctor.  This idea of what determines quality of life simply because someone has a cognitive disability.  Is WRONG.

If you are just as angry as I am.  If you believe that Amelia deserves to be treated equally.  If you believe that every child deserves a chance then sign this petition.

Support Amelia (Mia) and Her Family on Facebook.

And then go to this page and let the Children's Hospital of Philadelphia know what you think of that Doctor's statement.        

   
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I cannot stop thinking about this story and wanted to read their journey from the beginning.  For more on The Rivera's - check out a few of theses posts: 

About Chrissy & Joe Rivera
"Fix You"
How She Does It...

Gov. Cuomo - In case you forgot, it's Autism Awareness Month.

‎"A nation's greatness is measured by how it treats its weakest members." ~ Mahatma Ghandi

This afternoon my best friend, recieved a letter in the mail from Birch Family Services School for Exception Children.  Her daughter, Livi, has attended Birch Early Intervention program, since March 2011.  The letter stated that as of May 31st, Early Intervention classroom operations will be discontinued.  Why?  Budget cuts.  

The rate of reimbursement for Early Intervention (EI) services controlled by New York State has not been increased in 16 years.  And as of April 1, 2o11, NYS reduced EI rates by another 5%.

Devastated does not describe what my friend is feeling.  And she is only one parent.  There are other mothers and fathers of Birch kids - feeling just as devastated.  Where will their children go?  And will they find appropriate placement as mandated on their IEPs?    

Talk to any parent about Early Intervention and they will tell you - it works.  It makes a difference.  When I think of The Boy before and after EI - it's like two different kids.  Before EI, The Boy had no language, no eye contact, imaginative play or social skills.  And once he had the tools he needed to learn, he thrived.

I want Livi to thrive too.  I want her to have the same services The Boy received.  I want my best friend to recognize the difference EI can make.  Because the impact of losing services after the slightest progress has been made could cause serious regression.  And nothing pains a parent more than seeing your child reach a milestone,  and then having your child's progress become stagnant.

For parents to receive a letter stating that their child's program is closing during Autism Awareness Month is beyond insulting.  It says that our government - does not care.  That their child is not worth it.  That their child is not entitled to a free and appropriate education.  That they might as well give up on their child.  Because government has given up on their children.

Maybe this petition won't make a difference.  But it's time to say - our children are worth it.  They are entitled to a Free and Appropriate Education.  We will not give up.  And Early Intervention services is something worth fighting for.  We must fight for our children, until they are able to fight for themselves.


Sign the petition here - http://www.change.org/petitions/help-keep-birch-family-services-early-intervention-classroom-operation-open 

Thank you!