Perfect love and the fear that opposes it.

The date was April 8, 2000.  The event was the 1st ever Rally for National Autism Awareness and the first ever Congressional Hearings on Autism.  There are a few things that stand out from that day that I'll never forget....

But first, the present.  April.  Autism Awareness Month.  With all it's hatred and division.  All the hideous posts from those who fear our message, causing those who want to help, to be fearful of helping.  And I have to ask myself why....  But I know their motive...  Fear.  In 1 John 4:18 it says, "There is no fear in love.  But perfect love drives out fear, because fear has to do with punishment.  The one who fears is not made perfect in love."  The Message Bible states it this way:  "There is no room in love for fear. Well-formed love banishes fear. Since fear is crippling, a fearful life—fear of death, fear of judgment—is one not yet fully formed in love."  

It is fear that drives those who don't want to be cured, to prevent us from wanting to treat our severely affected children.  It is fear of those parents who have been indoctrinated with the lies that without their child being fully vaccinated they will die.  It is the fear of crippling loss of profits that drive Pharma and the Vaccine Industry to perpetuate lies of safety.  It is fear of losing jobs, elections, prestige, credibility that drives agency directors and Congressmen to side with them each and every time.

But the parents...  Me as a mother of a son who is severely affected by autism...  All we have to drive us is that perfect love for our child.  Not fear of losing money, our job, or our reputation.  Just love.  Nothing else would drive a parent to endure all that we have been made to endure, when we could all just hunker down and shelter in place and not give a rats-ass about anyone else's kid.  Our motive is that perfect love we have for our children and our future grandchildren, that love that drives out any and all fear. 

Back to the events of fourteen years ago and that perfect love.  I sat in the Congressional Hearing room in the audience.  Raymond Gallup was giving testimony about his son Eric who regressed into autism from the MMR.  I remember a part of his story that haunts me to this day.  How when Eric would get agitated, they would all run and lock themselves in a  bedroom.  Living that kind of life, I wouldn't have the energy to be in Washington testifying at a hearing, but he was.  Out of that perfect love for his son, he was there to beg and plead for help.  He was there to give facts on behalf of the organization he founded and the research they were doing.  He was there to give warning to prevent others having to live the kind of life he had to.  And in reply, one of the other panelists or a Congressman, not sure who, but someone asked him what his profit margin was, something about a stock market something.  Something totally ridiculous and absurd.  He had no money.  He was a parent first.  He did what he did out of love, not for profit.

Another parent on that panel was Scott Bono.  I remember his opening words of how he was there before them wearing the only suit he had.  And I have no doubt that was true.  None of us had any money, all the money we had, and more, went to our children.  Traveling cross-country to get help for them, and paying for therapies for them that insurance wouldn't.  We all sacrificed greatly to even be there that day.  We begged and borrowed and pinched every last penny to get there.  Not for what we would gain, but for what we were tired of losing.  Our children.

It was perfect love that motivated the women to stitch hundreds upon hundreds of quilt squares together for that day.  Finding time where none was to be found because of the full-time job of caring for their own children with autism.  It was perfect love that motivated Unlocking Autism to collect and organize and scan in thousands of pictures for the "Open Your Eyes to Autism" picture boards.
Those projects cost them all time they didn't have, and money they sure as hell didn't have. Money that could have been spent on helping their own children, not anyone else's.  Yet again, because of that love, they put aside fear of backlash.  Fear that no one would show up.  Fear of failure.  They instead pressed forward and did what it took to make that event happen.  That event that would bring about help, HOPEISM, and change.  Not just for their child, but for all children.  The only motivation being to halt the epidemic before it got further out of hand.  To tell the truth before the lies could be further entrenched.

That is why it is incredulously insulting to read such hatred and opposition toward us.  But I better understand it.  It is fear.  They aren't driven by the perfect love a parent has for their child and how that drives out any fear.  They just know the fear of the punishment if it ever is actually acknowledged that they caused our children's autism.  Those with high functioning autism who can speak for themselves, are driven by a fear that perhaps if we want to cure our children, their life might be one we want to cure or wipe out too.  I don't know.  I don't know what would possess them to not want to help us help our children possibly be able to speak for themselves one day like they can speak for themselves.  Parents who have children without autism who oppose us, again do so out of fear.  They have been told for so long that vaccines save lives, that they fear their child will die without one.  Little do they know that quite possibly, their child could die very slowly for the rest of their life if they do indeed, get one.  That in preventing a death that might never come, they have instead prevented them from fully living.

And I think what signifies that perfect love that motivates us, is "the incident" of that day.  Those who were there know what I'm talking about.  In the middle of someone speaking, someone went up on stage to the microphone to announce that a child was missing and to please help look.  Without question everyone did just that. Nothing else mattered at that moment.  Everyone who heard the announcement, looked.

Just like it is today with autism.  Our lives have been interrupted.  Nothing else matters but looking, searching, reclaiming.  For truth.  For help.  For change.  Because of the love of our child, and for all the children like that boy who was briefly lost that day.  We would have looked until we found him that day.  No one would have quit looking.  Just like we will never quit sharing the truth so that we might prevent another child's health from being lost to autism. To seizures.  To GI Disease.  To wandering.  To drowning.  To death.

And those of you on the sidelines and even to those in opposition to us, please take note as to just whom it is who is searching for the truth.  It isn't Pharma.  They have no motivation to.  It isn't the Government, it would ruin their credibility to.  And as we have found out, and you will too when autism hits your child, it won't be the doctor you can turn to for help in searching for your child to get them safely back.   

It will be us. 

Those you opposed.

The vilified.  The criticized.  The quacks.  The written-off.  The fearless.

Those of us who have given everything.  And I mean everything.  In a core group of women I was part of on that day long ago, out of five of us who were married at that time, four of them are divorced.  I am not, but make no mistake, we don't have a typical marriage.  We get no regular conversation time, let alone regular date nights.  We have a tag team marriage.  I would say despite that we have a great marriage, but it is definitely a different kind of marriage.  Much has been sacrificed from all of us.  Yet we press on.  That perfect love for our children the driving force that keeps us battling on, even when we lose so very many of those battles. 

And that's the perfect love those who fear us and oppose us will never understand.  They will continue to not help us, yet we are fighting so that nothing ever hinders their children's or Grandchildren's health.  We were supporting programs to fund wandering prevention.  So that if their children became one of ours, there would be resources for them.  Those who trashed Chili's wall against us, did so out of fear of what we represent.  The greater the truth we share, the greater the opposition to counter that truth.  Chili's caved into that pressure out of fear of lost profit.  We have nothing to lose.

I guess the only thing good about this month is that we aren't the only ones whose truth has been mocked and heckled with such ferocity. 

Where we only feel battered, beaten, and bruised, he was all those things.

Where our cause is being crucified, he was crucified. 

The HOPEISM I find in all of this, this month of autism and Easter, is that no matter whether truth is a person such as He is, or a cause such as what we warrior moms and dads advocate for, while it can be temporarily killed and buried...

It can never be permanently defeated.

It will rise again.

We will never quit.


That is the beauty and the HOPEISM that I will cling to the remainder of April.

No Way...

April 2000:

A poem about  Autism Awareness

By Michelle Guppy and Carol Fruscella – original idea - Carol J. Fruscella

April 8, 2000

It is a bright…. Clear…… spring day.  There is a gentle breeze in the air…..  As you walk toward the mall area in Washington, D.C., you see the Cherry Trees in Bloom……………………you stop and pick a flower……..and it reminds you why you are there…

For the day that your child would be freed  from the limitations of Autism – to  be able to

Touch…….  Smell………  Explore ………

For the day that his black and white world………. would have color………

The birds are singing, and the sunshine feels so good on your skin.  The preparation for this day has been trying  and hard.  It was a long and  cold winter in many ways………….  Many times there was doubt that this day would happen……..   This day is a Miracle in so many ways. A day where  all of our efforts have come full circle.  A sense of achievement overwhelms you……….

As you enter the mall area…………. your breath is taken away by the sight of  thousands of pictures.  You stand still at the power of what they say……..each child’s face silently telling  their story………. each one waiting, deserving of only the best.

You see Grandma and Grandpa scanning the  boards, trying to find their  Angel’s picture.  You hear a small voice go “EEEEEEEEEEEEEEEEEE… .”  You see  another child point,  “Daddy, that’s ME!”

The Autism Awareness Quilt is on display……………..but it’s so huge – you will never find your child’s square!  “Cure Autism Now,” one says – “ Save my brother,” says another….   .Oh, there it is over there, your child’s colorful scribbles on fabric that bring tears of joy and pride………

In the background, you hear speakers, telling the Nation of the need to help these children – and for the first time in a long time…….. you have Hope that this is the event that will  make it  so.

That there would be unity and awareness…..

That there would be a cure…..There are so many people………….who have traveled so far for this rally……..so many new friends……..so many stories to share………………we lean on each other for support………knowing that this is just the beginning…… of a journey that  will continue on……..  to raise Awareness……….to get answers……………..to get the help and support  we all need.
Close your eyes…….. imagine being  there…………Hearing the silence of  those who can’t speak………Hearing the voices of those who can…………

Dusk  came over Washington, D.C. …………..

A dropped Awareness Ribbon is all that is left of that day…...

Now open your eyes………..

 

Be there to make history and help keep the dream alive.
 

April 2014:

The title of that poem was "A Dream Come True" -- I think now, on the verge of April 8, 2014 -- it seems like it would be best titled, "The Nightmare Continues."

It breaks my heart to think that. 

To write that. 

Never, ever, back in the 1 in 500 rookie autism parent days would we have ever fathomed numbers of today, 1 in 68.  Never would we have fathomed we would be veteran parents.  No, not us, our children would be cured by then.

Not ever would I have fathomed reading blogs from folks sharing things as if for the first time when we veterans experienced them over a decade ago.  New revelations that are actually old news for us.  Same ol', same ol'.  New autism organizations formed to take yet more money from the established ones who need the money to be even more effective. 

People hindering instead of helping.

The things that are new in terms of treatments and opportunities are still not accessible to those without the means to obtain them.


It's hard to bear at times. 

For that rally, for those Congressional Hearings, we worked so hard.  We gave everything, and more.  And we have continued to do just that.  I hear so often people sprinting out of the starting blocks with new ideas and new goals, only to peter out in the name of having to take a break to focus on their own children.  All the while, us veteran parents have had no choice but to do both. Find a way to do more, sacrifice more.  Heal our own children while saving the world from autism.  No break.  Who would then pick up the slack?

I sit here still stunned by the sheer numbers now vs then.  But I can't help but smile too.  I don't feel we failed, I feel we just haven't won yet, and so must keep fighting.  No, the only ones who failed, are those doctors and agencies who we have reached out to for help, but who have instead turned their backs.  They must live with the realization that they could have stopped this epidemic, but didn't.

We who forged paths when there were none haven't failed.  We worked.  We followed the truth no matter where it lead because we had nothing to lose.  We didn't merely light things up blue and think we were actually changing anything.  We listened to the truth, and we acted on it.  And we did it from our own homes, with no pay.  No one in a fancy office receiving a salary has even come close to those achievements.

No, we haven't failed.  Not us who were there from the beginning on the message boards late at night, all night.  Not us who called, faxed, rallied, wrote, and researched.  Not us who endured scorn, humiliation, threats.  Not us who spoke truth in an ocean of lies.

Not us who saved pennies to be at rallies and Congressional hearings because it was that important.

Not us who made history by standing up and speaking out.

Not us who will NEVER QUIT in helping to keep that dream of so long ago, alive.

In that poem above it speaks of thousands of pictures.  That's what it was then.

Today, it would be 1.2 million pictures on those boards.

I have the dream now that I did then.

When will anyone hear that silence?

The "A Call to Action" Autism Awareness Quilt stitched together in 4x6 panels by Nancy LeGendre.

Bernard Rimland.  I wonder what his thoughts of today would be.

The "Open Your Eyes to Autism" picture boards by Unlocking Autism.

Brandon.  The reason I went there...

Kyle Walsh at our prayer meeting before the rally.

Brandon's quilt square.

This picture below...  This mom represents my thoughts today. 

No Way. 

No way this epidemic of autism can be worse now than when we began our fight.

No Way.

No way those agencies designed to protect our children's health are still turning a blind eye to researching the obvious, vaccinations, toxins, etc.

No way there's not an appropriate, community-based program in place to care for my son long after I'm gone.

There's just.....no way this amount of devastation could be real.

Yet,

It is.