My written testimony for the IACC
My name is Michelle Guppy, parent of a severely affected adult with "autism" -which we all know is not autism at all, but vaccine injury. Those responsible for causing it and those who do nothing about it in the medical industry - call it autism to avoid any awkward guilt of having been absolutely apathetic about causing it and too cowardly to admit it. "Pharma's profit and our political career protected at all cost!" is their secret motto!
My son is 22. He cannot read, write, or speak. He has autoimmune bowel disease, PANDAS, seizures, chronic yeast infections and a host of other illnesses that I guess I made up because no one in any medical center has ever been brave enough to acknowledge it. Only those physicians who either have their own vaccine-injured child or who were brave enough to believe parents and left traditional medicine to actually rediscover what medicine was supposed to be about all along -- healing. Healing, not prescribing. Listening, not doubting because "it just can't be".
I testified before this very committee in November 2013. You are welcome to view my blog where I shared about that experience. At the bottom of that blog is a video of what my testimony was that day. I encourage you to listen to it. I have the same things to say for this meeting, plus these new remarks.
Oral Testimony at IACC
Blog about IACC Strategic Planning
Not one thing has changed since I attended that meeting. Not one thing has changed for any of our children since the very first IACC meeting. Except that they are now adults with even fewer options. With even more exhausted parents. Who are even more in debt because insurance still won't cover treatments that actually work. Except that more are diagnosed with "autism" -- and more will have no doctor in their medical centers who know a thing about testing and treatment. More doctors in mainstream medicine will refuse to attend biomedical conferences by other doctors who have been brave enough to listen to parents and who are successfully helping their patients overcome pain, make progress, and gasp! work toward healing! More parents will have need for respite services that aren't there or that they cannot afford. More "children" will age out of public school and not have been properly educated or prepared for vocational anything and will have nowhere to go. Our children need "college" not institutions. Lifelong assistance on working toward skills.
I sat at my desk with a blank document for a week now. Simply paralyzed. There is so much I need to share in this letter of testimony to each of you on the IACC that I have simply not been able to sort it out to begin. But something happened last night that helped me. Yet another crisis. From yet another mom. I will share snippets of our conversations, and those from other warrior parents. I want all of you on this committee to read their words. Their cries for help. And never forget them. These words reflect what is happening to parents all across America. Warrior moms and dads and caregivers who have given their all for so long and who are simply exhausted. Their "HOPEISM" and their "NDCQ" (Not Dead Can't Quit) mentality that has held them up for so long - cracking to the point of wanting to just surrender. Wanting to just die.
Why is this happening? Why are parents at their breaking point? Because people like each of you on these committees will not listen to parents. You will not go where the truth leads nor where the need lies. For fear of what it might make you have to confront. So instead, you study the same things over and over, things that have been asked and answered but no action ever taken.
And all the while parents like me are helping pull back parents who I am speaking of from the edge of despair. I don't pity us parents and our trials. I pity those of you who are made aware of our trials, our needs, yet do nothing.
This is not just one parent -- I hear these same vents, these same cries for help from many! We parents who are overwhelmed with our own children and adults cannot physically help in these situations! We need help ourselves! We need crisis caregivers and a safe Prescription drug free place where they can get help and we can get sleep! Respite! Reprieve! We need doctors who understand that autism is medical, NOT psychological! We need healing, not prescription drugs! We need treatments and testing, not restraints and more prescription drugs! We need short term residential options that will honor and respect use of supplements, special diets, and individualized treatment plans. Where? Where is such a place that parents can afford and don't have to be on a waiting list? Behavioral meltdowns and crisis' do not wait until the child's name comes up on a waiting list.
This from a parent:
Well ya know he seems okay, til he's not! We all cried ourselves to sleep around 1. Talked about family suicide, that's just so not normal. We r just going through so much. I can't stop crying and I know I have to calm down but I'm not handling it all. Too many days without sleep! I'm scared, of so many things that I feel paralyzed. I've got to help him somehow! I know that it's his stomach as well because it's happening right after food! I'm teetering on the edge of despair! Either God will intervene or.... Life will be not worth living!
This from a parent:
It's sad that other people don't have any idea the life we live. The despair, the constant struggle.
This from a parent:
I don't know if I'm okay .... it's all just too much. It's so hard to have NO HELP so I can work. I'm gonna call and get his teeth done, even though stupid insurance won't pay. I don't know what to do. Maybe his teeth hurt. THEN, I'm going to go to the neurologist and see about these crazy incidents being seizures? What else is there? I surrender. Surely God cares, I just can't tell anymore
How many more similar messages must be shared with this committee for you to understand the emergency this epidemic of vaccine injury, excuse me, "autism" is?
The meeting I attended to give oral testimony was during a strategic planning. There were items listed for people on the committee to "discuss" that any parent like me could have drawn out a treatment and action plan for in one day. It took this committee a year to look into those things! Things we've been begging organizations and committees to take action on for years.
Part of the problem is that the scope of this committee is too large. There must be two separate committees to address the needs of both ends of this diverse spectrum. Those who are higher functioning and who can speak for themselves, and those like the majority of our children who are non-verbal and significantly affected. To have high functioning "Asperger" adults or professionals on a committee addressing the needs of those like my son is not appropriate. They have no clue what our lives are like. We need parents on this committee -- parents who know what is needed. What it's like. The entire first half of each of your meetings should be parent presenters or independent thinking professionals and physicians who actually help heal our children. Then the second half of your meetings is making what they share that is needed -- happen.
In closing -- though I have much more to say -- I will say this... If you want to truly know what the issues are for us, ask us. Set up an online survey and ask. Ask what are fears are, our needs are, what is working, what isn't. And if you want to actually be the committee who does something about it -- believe what we say. And act on it.
Back to my friends in crisis...
One of them has an adult son who is non-verbal. He has a myriad of iatrogenic and epigenetic disorders that cause him to have periods of behavior issues because he is in pain and cannot communicate that. He has aged out of public school, and his parents fear he will be dismissed from the private program because of medical based behavior manifestations that he cannot control. His parents have gone to infinity and beyond for him and still cannot find consistent medical care nor can they afford to pay for things that might help that insurance won't cover or that are deemed illegal to medically use. They both work just to care for him, and if he must leave this program, one of his parents will have to stay home with him until they can somehow find another place that will accept him. He needs 24-hour supervision. He needs highly trained staff. State-based institutions are not an option. Parents like me, like all I know, would rather die than send their child to such an abusive restrictive incompetent prison. As if there were even enough to hold all our children if we had to resort to that.
So tell me - what do I tell her? What do I tell all who message me long after each of you are sleeping soundly? Where do they turn? Where can their children go? Who will help them?
I sure can't. While my friends are living their own brand of hell, I'm living mine with seizures in my son. I've been to every top Neurologist in my mega-medical center. No help. None. It is I who bring research to them, and they who look at me dazed and confused. One replying with, "Well, what's your end game for him?"
The truth is a lion. It is a powerful thing. It is a scary thing for those living a lie. When that truth roars in the jungle, many instinctively run away if they value their life. Their career. But few....only a few brave souls run toward that roar. Pursuing truth at all cost is greater than any harm or death that might happen in its pursuit. Dr. Wakefield was one such person. Recently, RFK, Jr. another such. Many parents and advocates and thinking organizations and physicians have run toward that roar. Recently the Nation of Islam has joined the ranks of those brave souls running toward the roar of truth.
What will this committee do?
Will you run toward the roar in pursuit of truth for what has happened to an entire generation of our children who are fast becoming adults, or will you remain in the safety of the shadow of a lie?
Your position, your influence on this committee means that you agree to be a pacesetter in addressing the epidemic of "autism" and all that goes with it.
If you do nothing, if you do not run toward that roar and do all it takes to help our children, you will still be a pacesetter.
You will have simply decided that there will be no pace.