Friday, April 20, 2012

Step 20: The Autism Wars

- Ms. Russo: "This is a WAR. We are losing a generation. If our military knew 400,000 of our children had been abducted, someone would react!"

The above statement is from a transcript of Congressional Hearings occurred on October 14, 1999.

Then, the numbers were that 1 in 500 children were diagnosed with an autism spectrum disorder.

Today, April 20, 2012, the numbers are 1 in 88 who have a diagnosis of autism.

I read a blog yesterday from a warrior-mom I have known from way back in the secretin-support e-group times.  The title of it was "We Can't Move Forward When We're Standing Still."  I had to look at that title twice, because it shocked me.  I know for a fact that from over a decade ago until now, I've been doing all but standing still.  At times running ragged getting no where, but standing still?  Never.  There's too much at stake.  Even now that I'm "semi-retired" from autism advocacy simply because for the first time since autism I have taken a few years to focus on my "other son" in supporting him through the challenge of his life in a Navy program he is pursuing.  But even in that "semi-retirement" I find myself with more to do than could ever be done.

It's not us standing still.  The warrior mom's, dad's, advocates -- it's the government.  It's society.  It's the medical community. The schools.  The politicians and policymakers
It's we who need the help, who are the only ones creating it.  Most often, doing it with no money at all which makes these autism wars all the more frustrating -- just where is all the money going from the places who have the money?  The mega-autism organizations, the government agencies with the funding to research, the agencies with the funding and staff to help.

I had to sit and just think about my own autism wars I've had to fight, let alone everyone's collective autism wars on a national scale.  It was sobering.  What Victoria Beck shared in her blog was right. Little has changed from then to now.

When I go to the Pediatrician's office I don't anticipate an open and honest partnership where my views and authority as a parent are first, foremost, and respected.  I instead fear that if I don't lie about whether my son's vaccinations are current, some Nazi-vaccine regime will be called, I'll be arrested and my son force-vaccinated with a flu shot!

When my son was in public school, I didn't take him there each morning with the security of knowing his teachers and para's had all the tools and training they needed to educate him to his fullest potential, I instead knew that they didn't, they weren't, and that I was virtually helpless against their infinite tax dollar funding to fight my finite nothing to fight with funding.

I don't embrace my son's future once I am gone as I do my typical son's.  I don't have that peace.  What I have instead are files of story after story where an innocent person with a disability was abused, neglected, maimed and murdered in a state school or institution.  And that even when caught red-handed, the criminals hardly got a slap on the hand, if even prosecuted at all.

I guess it's good that for this month and for this personal blog project of how autism awareness affects our family -- there were posts from others and how they see the good in how autism has changed us.  Because writing a blog like today's entry is sure sobering.  But like I said in the very beginning of this project, autism is both black and white.  It is both good and bad.  It is both joyful and sorrowful.  It is both heaven and hell.

In that blog Victoria was sharing that a friend had ideas on how to rekindle the uprising that got us those first Congressional Hearings and Rallies for Autism long ago...  We do need a new battle cry.  We do need new warriors.  I'm so thankful for the faithful few we have, who have been here for the long haul.  For the new blood in the Canary Party.  For the new Hopeism that has created.

But we need more recruits.

Many, many more...

I hope new parents or parents who think they're too knee deep in autism to join us in the battle - truly understand what the stakes are and how they must make time, find time, and steal time -- as we have done at great personal and family sacrifice -- to join us in doing what must be done.

There should be no other student like my son who I found out was made to carry a huge orange tupperware bowl with all his lunch dumped in it, through the cafeteria of his peers to eat his lunch out of. 

There should be no other student like my son who soiled himself in school and instead of them calling me for advice, they forced my son who was deathly afraid of showers, into a shower in the gym where he broke free from them and ran naked through the gymnasium full of students.

There should be no other mother like I was, who the school called the police on simply because I walked past the information stand down the hall because I heard my son screaming - to find him being pulled by the shirt collar by a para-professional.  Security was called because even though they knew exactly who I was, I didn't have an appointment to "drop-in" to observe my son. I observed a para pulling my son by his shirt collar, yet because I didn't have an appointment to be there and see that, I was the criminal, not her.

Yes, we have given schools the authority to not allow a parent to see their own child in a public school setting without a prearranged appointment.  How many child molesters do you know who would make an appointment with you so that you could observe them abusing your child?  It absolutely floors me that we have not demanded anytime observation windows or direct video feed to observe the care of our children who cannot report or defend against abuse.

I kinda now think Victoria's blog is wrong.  We haven't stood still, we've allowed society to go backwards with respect to "public" schools and vaccination choice and parental authority. With respect to who matters and who doesn't. With respect to whose funding gets increased and whose gets cut time and time again.

We've allowed schools to spend more on stadiums than special education.

We've allowed politicians to be elected and re-elected by Pharma's dollars, not because they've fought for the right principles.

We've allowed the media to incapacitate us with so many lies, that we've forgotten how to fight back with the truth.

We've allowed one governmental voice, to silence our millions of individual voices.

If you read no other chapter of the book mentioned in Victoria's blog, read the last chapter.  It begins with this quote:  "There is one thing stronger than all the armies in the world:  an idea whose time has come."  ~ Victor Hugo.

The time has come for these autism wars to end.

And when I look into the eyes of the strongest warrior in this world that I know, my son, -- I know that continuing to fight for him is a pretty damn good idea and that the time for all of us to fight even harder than ever before -- has come.

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