A business person in the Autism community who I have met at different conferences and resource fairs over the years, bought me a ticket. So, off we went to Washington, D.C. I want to share that though I am writing this from my perspective only, there were other parents who made the sacrifice to be there and who shared their testimony:
Carolyn Gammicchia
Carol Fruscella
Dawn Loughborough
Megan Davenhall, who read the written testimony of Lisa Joyce Goes
What was so surreal for me in even being there in Washington, D.C., is that the last time Carolyn, Carol, and I were there together, was for the 1st Autism Rally & Congressional Hearings on Autism. Thirteen years ago. That we even had to be back there still fighting the same exact fight, was very sobering. Depressing really. Will the next time we all converge there be when we're in wheelchairs? I pray not. But make no mistake, the caliber of women I was with that day in April 2000, and that day on November 15, 2013 -- is that if need be, we will be.
That's what gives me HOPEISM. Knowing that despite any differences we each may have in what our child needs - we will find a way to join together, putting all those differences aside, to collectively fight for our children.
Our adults.
When I was last there, my son was a child.
In January 2014, he will be twenty years old.
Which is precisely what saddens me most regarding the autism community. How lately so many are attacking "their own" so to speak. Using their brilliance and talent to repetitively attack a select few over and over, accomplishing absolutely nothing but further weakening, further dividing, a weakened and divided autism community. I sat in that room at the IACC meeting wishing that person were there with us, truly investigating each person in that room who needed to be investigated. Which was most of them. Using his time, talent, and brilliance in writing to help in the battle of us against them. Not pitting us against us.
So much time spent in "An Open Letter to ......" Then because some other organization didn't agree, their own "An Open Letter in Response to......" How such waste of time saddens me. The clock is ticking in my life on earth to care for my son; and for groups that claim to represent us to spend such time in wasted effort just tips me closer to the edge of insanity. I want this to be my "Open Letter to All Y'all's" that says "STOP". Stop wasting time and effort. We have an autism crisis. To sit there and nit pick to cover all politically correct bases is a waste of time. There is room on this autism battlefield to accommodate all who need what they need. If someone wants a cure, they deserve it. If someone doesn't, it doesn't need to be forced on them. "Life with Autism" for my son is a silent, painful disorder. One that yes, has brought such joy and meaning to our life, but one where my son is very much in need of medical treatment. Medical healing for him to have the chance one day to talk. To advocate for himself! Autism for him isn't an alternate lifestyle where people must simply accept him and adapt to his quirks. I do not want to, nor will never, view burning hot lava spewing out of his ass as something to accept. I will never think that in advocating for my son, that he would rather me just accept his seizures that have split open skin, broken bones, shattered teeth, and landed him in the emergency room more times than I can count, as part of who he is. No, I will watch how he must suffer and know in my heart that that is not the lifestyle he would choose to live.
What I share is my perspective of being at the November 15, 2013 IACC Strategic Planning meeting. If you want facts and numbers and specific people who said what - I urge you to watch that meeting. It was truly eye-opening to me, someone who has never been to one before. And as much as I hated to go and give oral testimony, I honest to God want to be at all further meetings. If for nothing else than to be a presence of truth in a room full of lies. Someone representing our truth must be at each of those meetings giving oral comments and sharing the truth they refuse to see. All of us, for every meeting, must make the time to submit written testimony.
That's perhaps the short version of my take from the trip.
The IACC...
To find out what that stands for and what the role of this committee is, click here.
Parents who care for children, youth, and adults who have an autism spectrum disorder diagnosis, I beg of you to familiarize yourself with this committee. Take some time to browse through their website and listen to previous meetings. Read about who is on this committee. And always, always submit written testimony to be included in the meeting. So very many of you said that you submitted written testimony, but it wasn't included in the handouts each member received. You must clearly indicate in your submission to them for specific meetings, that you want your written comments included in public input as written testimony to be made available to each member of the committee.
IACC Website
Public Comment Guidelines
I think one of the first observations was from my friend Carol. She wrote in my little Mickey Mouse notebook, "We are sitting at an IEP Meeting for this committee and no one can agree on how to write the goal."
What they were trying to accomplish is to put together their strategic plan that would justify their thirty minutes of wasted time in introducing themselves to each other when the meeting started, and the millions upon millions of dollars spent in doing absolutely nothing of value.
Please click here to read all seven questions they are to answer in that strategic plan. I kid you not when I say that the five of us parents who were there that day, could have answered those and found studies already done that illustrate our points. Most autism advocates and parents could, and that was so depressing to hear them all go back and forth among each other and all their fancy titles, and know that they are the ones in charge of helping my son. When each of us parents in that room knew more than them regarding those questions.
Perhaps to me, the most poignant illustration of that is their "Question Three" -- which is:
What causes this (autism) to happen and can it be prevented.
Not.One.Mention. of toxins, poisons, GMO's, the nutritional deficiency of non-food fast food, vaccinations.
Not.One.Mention.
I wanted to cry. This committee with millions of dollars to truly make a difference, truly help, and not one mention of any of the things that have been proven independently to trigger the biological dysfunctions that cause a diagnosis of autism for so many.
You know what IACC, here's your answer to that question... Toxins in vaccinations, Poisons in our environment, Genetically Modified Food, fast-food, processed food, multiple vaccinations at once -- all contribute to the epidemic of autism. To prevent the possibility of your baby being adversely affected -- remove all toxins from vaccinations. No multiple vaccinations at once. I would say to not vaccinate, but we'll start with baby steps. Ban GMO's, eradicate Monsanto's poisons in our environment.
Parents -- not one mention of any of those things were spoken.
Not one.
I hope this puts fear in each person reading this. Parents must stand up for the health of their children as we did that day. If we were each not there and in some way mentioning those things, it would not have been mentioned at all. And that scares me. Tremendously.
Parents whose children are receiving special education services in the public school, the person representing the Department of Education wasn't even at the meeting. All of you who are battling schools, who have children who have been in some way bullied or abused in schools, no one was there to represent you. Not one mention of special education services.
This is where I beg God to have me win the lottery. I want to be able to be at every IACC meeting to answer their "Question Three" over and over again. All of you must be submitting written testimony if you can't be there in person, in answer to questions three.
I think at one point in the discussion of the cause of autism, Insel shared about an App for Parkinson's that helps diagnose it based on speech patterns. He wanted to know if there could be an "App" developed that would diagnose autism.
I can see it now. "Autism, there's an App for that!"
You know what Insel? The "App" for that would be that any mother going to her Pediatrician's office to vaccinate their baby - would have an alarm sound that would say, "Danger! Autism potential! Tear the consent form in two and walk away!"
There's your "App" for Autism.
It only got worse after that. One highly initialed 'expert' suggested that we could track mother's based on their cell phone to see where they go -- as some way to determine the cause of autism.
The only tracking that must be done, is who is vaccinated, who is not, and who is healthier. That question has been asked, and answered, in other countries, with the result being that the unvaccinated are healthier.
That is the tracking parents in this country must demand before they ever consent to another vaccination ever again.
Insel also asked what yard line they are on in identifying autism. He asked if we are on the 30, 40, etc yard line....
Insel, you, and the IACC, aren't even on the field.
In identifying it, treating it, let alone doing all that can be done in helping to prevent the biological devastation to a child's body from it.
You have no clue.
It was then oral testimony time, and all five of us did very well in the delivery of our comments. I was so proud to be among such women of strength who stood up and spoke the truth. Who made the sacrifices to be there. The teamwork of one person who could be there, sharing the testimony of someone who couldn't be there. God gave me the strength to get through mine, and the boldness to stare down Boyle and Insel during parts of my testimony.
Click here to view my testimony.
I couldn't take any more after that. I was physically drained from being in the presence of such disdain and disregard for our children's health. There was a presence of such lies and corruption in that room. It's hard to put into words.
My friend Carolyn stayed until the bitter end, and from her recap I know I didn't miss much. When she shared that one of the members made reference to how perhaps our children could "grow out of it" - I knew I would have been arrested had I been in that meeting. That Carolyn shared that studying adult issues or services for autism was underfunded by that committee tells me that they even further have no clue.
As I said in my testimony, there's an entire generation who will "age out" of public school/services and who will have no where to go.
I don't want this to be a feel good blog. It's not. It must be sobering to each who read it because there is much work to do and there are no excuses for anyone not contributing some part to doing it.
That committee must have parents there at each meeting to be that elephant in the room.
To speak the truth.
Those handouts they receive must be in the hundreds with regard to public comment received as written testimony.
Congressional Hearings are coming up the fist of December, from now until then each parent must be writing to their Congressman or woman with regard to that "Question Three" in what causes autism and what must be done to help prevent it.
Please, I beg of you, CLICK HERE and make your voice heard. Please support the efforts of so many who are working together for our children.
That night after the meeting, Carolyn, Carol, and myself went on a monument tour. We needed to just do something fun and for me, try to put aside the depressing reality that is the idiocy and indifference of the IACC.
But the whole time we were on that tour, I kept wondering if it was worth it to even have been at that meeting. We were but five in a room full of so many who out initial us and who have the funds to out spend our truth and perpetuate their lies.
Then we came to the last memorial. The wall. That sobering wall with endless names etched in it. It was fitting that it was dark, and cold, and raining. It fit my mood after being in the presence of such dark and cold indifference.
I just stood there and could do nothing but touch the names. I don't know anyone listed on that wall. I will never be able to relate to what any of those names went through, except in wondering if they thought their sacrifice was worth it. I was sure pondering if my insignificant compared to theirs sacrifice to attend that meeting was worth it If what I said would make any difference. When they left to go fight a war that perhaps they never wanted to fight, did they wonder if anything good would come from it? Did they think they should just stay home and let someone else do it? If they could come back and stand there as I stood there and touch their own name, would they be proud of how they gave their all, or simply regret that they did? If they could do it all again knowing their outcome would be the same if they did, would they?
I just wanted to cry as I am now in writing this.
I honor them by saying yes. It is worth it. Fighting a battle worth fighting is always worth it, no matter what the odds, opposition, or outcome.
We honor them by never forgetting their war.
We honor our children by Never Quitting our fight.
The next battles are just beginning.
Please be a part of them.
Congressional Hearings on Autism
January IACC Meeting
To HOPEISM!
HOOYAH!
~
written by Michelle M Guppy
1 comment:
I just wanted to say thank you for your testimony for all our kids. It was a beautiful statement, and so, so similar to a letter I had written and sent in on behalf of my son. My son is 18,severe GI issues, seizures out of control,etc. Your story is so much ours. I remember you from years ago on chelating kids. So thank you, it made me feel better to see a post from you, still fighting after all these years, we will never give up! Val B
Post a Comment