Life with Autism

Thursday, November 21, 2013

Dear Congressman Issa...

Congressman Issa,

As I type this, I am still breathing hard from the aerobic exertion of my nearly fifty-year-old self from having to semi-lift and drag off the cold tile floor to a gymnastics landing mat, my nearly twenty year old son who is non-verbal and severely affected by autism,  -- and who just had yet another seizure. I have no one here to help me lift him to a bed.  So a gymnastics landing mat on the floor will have to suffice as he sleeps it off.
All the plans for the rest of the day cancelled.  Yet again.  I must chuckle in how just a few days ago I was e-mailing our Pastor about perhaps resuming a mid-day prayer time that was held in the past.  In what world would I actually think I could commit to such a lofty desire in actually thinking I could be somewhere as scheduled...

Not in my "Life with Autism"....

Not ever.

I'm writing this knowing the chances of it ever reaching you are slim.  Though I will formally submit it to your office.  Just as I have submitted so very many other similar letters over the years in our "Life with Autism."  In fact, in preparation for the Congressional Hearings on Autism that were to be held in December, I actually searched my saved documents for letters I had previously sent to members of Congress. I was going to use them to compose yet another letter to send.  I was saddened by them all.  Each at different times, all with the same message of help.  The same plea's for reform.  The same demand for answers.  The same truths shared.

Here are excerpts from the letter I wrote to Congressman Burton for the Congressional Hearings on Autism over a decade ago...

Written in August of 2000: second child was born on January 4, 1994.  This child was breastfed, developed normally, smiled, laughed, scooted, rolled, sat up, all the milestones were met.  Brandon had his first MMR on 1/4/95 on his first birthday. At that time he received the last of the 3 HIB vaccinations as well.  That night he vomited 3 or 4 times and was inconsolable.  We just thought it was a cold.  Then 6 months later during periodic well- checks, my pediatrician was concerned that Brandon was not developing on target.  He was not hitting the milestones for his age.  At 18 months to 2 years of age, Brandon was diagnosed as PDD. 

On 7/31/1996, when Brandon was 2.5 years old, he received yet another MMR vaccination.  Why I allowed that to happen I’ll never know.  Something about a new more effective strain to replace the old vaccine, and the children had to be re-vaccinated.  After that approximate time until now,  I do not remember a normal solid formed bowel movement from my son.  Nor has his language ever developed from the usual babbles, and mamma’s .  Coincidence???  or a Connection???  Where’s the unbiased research into that?  Research from independent  groups and with money not connected to the vaccine industry itself…  The questions we ask ourselves late at night, the questions without answers we receive from our Pediatrician’s  - - - are just maddening.  Every other disability or disease I can think of for a child has some answers.  The parents are usually told what caused it, what treatment plan to pursue, what the outcome will be.  With Autism – we don’t have that!  Everything is theory – try this, try that…  when will we step up the research to get some answers?  I have thought and thought over and over, what did I do with my child from the age of 18 months to 3 years when the regression really began..  my child didn’t go to daycare, did not have a head injury, I wasn’t a “refrigerator mom”, all I did was have him vaccinated on time!

Those are the issues I live with on a day to day basis.  From the time my child wakes in the morning, to the time he goes to bed at night. My nights are  mostly filled with thoughts of:  What insurance company do I have to call and dispute a claim with.  How should I word the ad in the paper for a therapist.  What special education advocacy group can I call to attend an ARD with me.  Did I remember to buy more supplements for my child’s regimen….

Instead of my freezer being filled with Popsicles, it is filled with frozen urine collection tubes to mail here and there to try and get answers to  help my child.

The greatest burden on my heart  is, “Will it ever end?”  “Will there ever be answers to the questions?

In the Congressional hearings of 1999 on Autism, Renee Russo testified that, “This is War,” referring to the need for more awareness and research.  This is a war for awareness that we parents must win for our children.  We have been on the battlefield for quite some time.  We are drained from the tears and the financial burden, we are scarred from the hurt and anger of having no answers,  and we  are tired from the resistance on every issue we face.  It is time for reinforcements in terms of more awareness, research,  grants and programs to help our children.  As a Congress, your unity on the legislation and  the issues I have laid out before you  is the most “Lethal Weapon” we have in our fight for National Autism Awareness and  the future of our children.
………….  1 in 500 children are silent
             ………….. I refuse to be.

Here is one letter from 2005:

I want to thank you for taking a few moments to read this personal testimony on behalf of my family as to why I have traveled to Washington, D.C. for the “Power of Truth” rally on July 20, 2005, encouraging President Bush and Congress to enact legislation that bans the use of any form of mercury in vaccinations given to anyone.    I speak for my family – and for the thousands of children harmed by this toxic substance.

My name is Michelle Guppy, and I have been married to my husband Todd,  for 17 years.   We have two wonderful blonde-haired, brown- eyed boys named Matthew and Brandon.  Brandon is non-verbal and has autism and pervasive developmental delay.

As you can see in the pictures attached, Brandon was developing typically.  Sitting up, crawling, babbling, followed by a few words…  Then, when he turned 12 months old – he received a series of 9 or more multiple vaccinations all given at once – while he was running a fever and on antibiotics for recurrent ear infections.   I did not know that it was dangerous to give a child vaccinations while their immune system was already compromised.  I did not know that multiple vaccinations given at once, contained more than the EPA allowable levels of the mercury that was used as a preservative.  I didn’t know that my Pediatrician was giving the vaccinations too close together.

Those things that  I did not know – were what triggered the “series of unfortunate events” that has brought our family to this journey with Autism.

My son went from wearing hats – to that being a painful sensory experience.  My son went from babbling a few words – to being totally non-verbal.  My son went from looking at me and smiling – to sitting in a corner banging his head against the wall.

To think that this all could have, and should have, been prevented – is incomprehensible.

Please support any, and all, legislation that bans the use of any form of mercury in any vaccination given to anyone.

It’s too late for my child, and for this entire generation of children harmed by mercury, but it’s not too late for the next generation.

Remove mercury from vaccinations.

That was in 2005. 

Then for the Congressional Hearings you held last November, this is what I submitted:

                 Congressman Darrell Issa
Committee on Oversight & Government Reform
     Testimony for record on Autism Hearings

My name is Michelle Guppy -- mother to Brandon Guppy, my son who is 18 years old and is non-verbal and who is severely affected by autism, gastrointestinal disease, and seizures.

He was not "born with it".  He was developing and starting to say a few words, when after a series of 9 vaccinations in one day -- he lost language and regressed into autism.  Where one day he was smiling for the camera with a hat on, the next year he had so many sensory issues he could not tolerate wearing a hat and his smile was gone.  In its place the preference to be alone, untouched.  Happiest when in his room banging his head on the wall.

Ever since the 1st Congressional Hearings I attended, I've been banging my head against the wall myself.  I've been at this since so very many parents like me sat in the hearing room listening to Congressman Burton share the truth, and all the other Government alphabet-soup agencies tell their lies.  I get it, the implications of admitting vaccine policy has gone terribly wrong.  I get that you have to go along with the money that funds your elections or re-elections in believing what Pharma tells you about how there's no evidence vaccines cause autism.  That's all fine ---  except that too many and too toxic vaccinations do cause autism.  And will continue to...  Denying it won't change that.  Redefining autism won't cure it.

I watched every word of what was spoken from my desk at home.  I can't work because my son misses so much school due to uncontrolled seizures.  I watched those hearings and I was skeptically hopeful.  I laughed at how terribly uncomfortable Boyle looked.  Sounded.  Rightfully so.  The CDC & NIH have lied and covered up the truth for too long.  I cried at the truth from those who are on "our side" and who are not tainted by money and power and who are free to speak that truth.  Free to follow where the truth leads -- no matter the implications.  I hope you will too. Follow the truth.  I met a Texas Senator once whose words give me hope that are others in Congress who have his bravery.  He said "Supporting autism insurance is the right thing to do, whether it gets me re-elected or not..."   That's what your job is.  To fight for & serve people, not help fund & support special interest groups, or Pharma.  Not to protect the CDC & NIH.   Healthy children do not make Pharma money.  The Autism crisis is a result of that fact.

We are tired, broke, yet we fight against all odds each and every day for our children.  Education, Insurance, Medical Treatment, Recreational Programs, Respite, Long-term Care, Supports, What happens after 21, What happens when I die.  I'm one of the veterans - I've been at this for a while.  I'm tired.  My son deserves for Congress to say to him, "We're sorry" and then to listen to us how to help him. What he needs.  What they all need.  The 1 in 88.  And counting.  They need for the truth to be told, for the lies to stop, the corruption to end.  The help to finally begin...

Today is November 21, 2013. 

I just returned from another "rally" of sorts in traveling with friends to give Oral Testimony to the IACC.

Same crisis, different President, higher incidence. 

And my HOPEISM in the Congressional Hearings for this year?  Yet again dashed.  I'm sure for no other reason than those content to live in their lies and uncomfortable with the truth not wanting to participate.  Well, excuse the language, but screw them.  You do not work for them, you work for us.  Us who need those hearings to have an opportunity to share the truth.  Not our truth, not Pharma's truth, not the CDC's truth, not the NIH's truth, but the truth.  Allow us to present the research.  Give America the chance to decide whose truth they would rather leave their child's health to.  I sure wish I had that opportunity years ago before I ever allowed one needle full of toxins to be injected into my son's perfectly healthy, perfectly designed body.

I don't have any new or different pleas to submit other than what I've already submitted.  Time after time.  Except maybe that my son is older, seizures more frequent, costs to care for him getting higher, my time on earth to care for him getting shorter.

I hope my son's eyes haunt you with each excuse or delay in holding hearings for the truth of the corruption in the vaccine industry, Pharma, the CDC & NIH - to be exposed. 

His eyes represent the black & white truth.

And I hope they bore into your soul as much as they do mine.

Perhaps more...

Because I didn't cause my son's autism.

YOU, the government, in a myriad of ways, did.

Tuesday, November 12, 2013

When Superman Sleeps...

I had one of those thirty-second conversations with my husband the other night.  Because he is the one who has the job that pays the bills, I typically do the night shift with Brandon so he can sleep and be rested for a very demanding job.  Brandon had not been sleeping at night, and he asked me if Brandon had slept the night before.  I remember laughing in reply, "You have no idea what goes on after you go to bed.  It's a whole 'nother world upstairs!"   I think at one point in that night in question when I went in Brandon's room to stop him from jumping up and down -- he had taken all pillows and all sheets off his bed.  Somehow they were all under his bed.  And there he was, just wide awake jumping up and down.  And there I was, at 2am, crawling under his bed to retrieve all the bed things, making his bed, and threatening him with no straws ever again in his life if he didn't get in bed, stay in bed, and SLEEP.  Of course that didn't phase him.  I think not even an hour later I heard him jumping again while playing with the one electronic toy I missed the time I went in there before I found the sheets and pillows under the bed.

I wanted so badly to just say to him, "Fine, when you do get tired, sleep on a bare bed with no pillows.  Or crawl back under your bed and sleep there on the floor with your pillow, sheets, and dust bunnies to keep you company!" 

But I don't. 

I fix the bed, make sure he's clean and dry, and see how close to falling asleep I can once again get, before I have to get up and do it all again.

In how maddening it all is, how could I possibly be mad at this innocent child who is probably as frustrated at it all as I am.

That's the thing that is so hard.  What is his Kryptonite that keeps him awake?  That hurts him?  That frustrates him? 

You just can't imagine what it's like to live that way for so long.  New parents expect that.  To not get more than a few hours sleep.  But for me, my son is nineteen.  I've been doing the work of three shifts of employees in a nursing home type facility.  It's mind-boggling how parents must do that.  And I am fortunate that for me, these all-nighter's come in cycles.  I do get reprieve now and then when he does sleep through the night.  Well that, or those are the times I just too exhausted and don't hear him.

And then there's the times like these when whatever that Kryptonite is, he has defeated for the moment and sleep takes over. 

No matter where he may be at that time.

Sleep my Superman...

Sleep soundly...