Note: Below is testimony from last week's IACC meeting in Washington, DC. It takes tremendous effort for autism Moms and Dads to travel to make our children's plight known and voices heard. Bookmark Michelle's blog, This is Autism. Thank you, Michelle.
By Michelle Guppy
My son Brandon is 19 years old. He was born perfectly healthy and is now severely affected by regressive autism from vaccine injury. He cannot read, write, or speak. He needs assistance with the most basic of life skills. He must have constant supervision because he has no sense of danger and will wander off given the slightest of opportunities. He has bowel disease, auto-immune disorder, allergies, & the list goes on. He suffers from uncontrolled seizures that cause him great harm. I am unable to work outside the home because it takes all my time to research how to help him, advocate for him, and care for him. At times he endures such pain. The frustration of not being able to communicate what hurts, - causing him to bite his own hands to the point of bleeding.
My autism advocacy journey began right here in Washington 13 years ago. In all those years I have not seen any real strategy or actions to address the crisis that is the epidemic of autism. I have only seen the number of those affected increase. Any help I have received has been from other parents, or from doctors who themselves have a child with autism, or if not, who have actually listened to parents and dedicated their lives to truly helping them. I live 30 minutes from a major medical center, yet they have given me little to no usable help. When I meet with those doctors, it is I who educate them. It was years before I found medical help 2 hours away for my son to be scoped in evaluation of and treatment for his GI Issues. I believe my son would be dead had I not found a doctor 16 hours away who I now consult with for treatment of issues traditional doctors would never acknowledge.
There is something wrong with a system where insurance covers doctors who do not help, but not a dime for the few who actually do help.
There is something wrong with a prescription program that covers Pharma's drugs that do not help, but not those vitamins, supplements, and herbs prescribed by my doctor that very much have helped heal my son.
There is something wrong with funding studies that produce the same conclusions yet take no action to address them. I can summarize them all with this: My "Life with Autism" is harder than anyone could ever fathom. My marriage does suffer. My typical son does get ignored. I am stressed beyond oblivion. I am bone tired and I am desperate for respite. My son needs recreational programs appropriate for him. I want him to live in our home, be a part of his community. He needs services and supports that I cannot afford, - given everything else like a lifetime of care for him that I must somehow provide for.
There is something very wrong with funding study after useless study about what might cause autism; except for the one study that CAN prove a major cause of autism.
We need medical centers that partner with researchers and holistic practitioners -- for a whole body approach to treating autism. "Autism is Medical" did a survey where 89% replied that they sought healthcare through alternative practitioners or managed their own child's health problems, because they could NOT get adequate healthcare for their child in mainstream medicine. 85% replied that mainstream physicians are NOT familiar with the health problems their child has. 71% feel their child's medical needs are IGNORED and are told that their autism is psychological and therefore their symptoms do NOT need to be investigated. 87% feel their child has less access to appropriate healthcare across all settings than a child without an autism diagnosis.
Action must begin with those sobering percentages.
To even begin to address the needs of the adult population is something that should have been started a decade ago. There's an entire generation like my son who will "age out" and have nowhere to go that their parents can afford -- for them to continue to learn, work, or further develop life skills.
I live in such fear. EACH. AND. EVERY. DAY. Fear of what new vaccine will be forced upon him. Fear that if I don't comply, I will lose the precious few services I do get, or worse yet, lose custody of my son in someone else determining they know what is best for him better than me, HIS MOTHER, and my GOD-GIVEN MOTHER'S INSTINCT. Fear of what happens to him once I die.
My presence here is very much me overturning the tables in the temple where the money changers of Pharma, Vaccine Manufacturers, Monsanto and GMO's have desecrated my child's health for nothing more than profit. To me, they are a den of robbers who must be liable for the damages the toxins in their products have inflicted upon my son. The CDC and NIH must be held accountable for their inaction.
I guess one thing has changed since the last time I was here. The status quo is no longer good enough. Parents like me are many and we no longer believe the lies told to us in what does or does not cause autism. We know the truth and will continue to expose it.
We will NEVER QUIT.