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Action Alert!

Posted Mar 12 2009 3:59pm

Have you seen the latest Action Alert from Generation Rescue, Autism Action Network, and Illinois Biomedical Kids?  This is part three… and it’s one we can all easily participate in.  I know some of you don’t like making calls, I understand that.  That’s why this action alert is so great - all you have to do is write about your child - most of us do that every day.  Here’s a portion of the action alert up on Age of Autism today ( CLICK HERE TO VIEW THE ACTION ALERT IN ITS ENTIRETY ):

From Generation Rescue:  If you want to speak out for change for your child with autism, please go to WhiteHouse.Gov and leave your message for the Office of Public Liaison:  • Tell them you support Generation Rescue, Autism Action Network (AAN) and Illinois Biomedical Kids as they work directly with Senators Durbin, Casey and the Office of Public Liaison to relay parental concerns on the current draft bill. • Write a short message describing your personal story and the importance of allowing parents to make the medical decisions necessary for their children. To read more on the original Action Alert from Generation Rescue and Autism Action Network (AAN) and to access the current draft legislation, go HERE.

I hope you’ll all take a few minutes to participate. The more parents they hear from, the better! This is an easy way for you to advocate for our kids.  Write your letter, copy it, then paste it and click “send”. Done. 

Here’s my letter (which I was able to paste right into the White House website HERE ). You’ll see I even copied some of the text from the action alert:

To Whom It May Concern: 

I am writing today to speak out for change for my son with autism.  It is important to me that you know I support Generation Rescue, Autism Action Network (AAN) and Illinois Biomedical Kids as they work directly with Senators Durbin, Casey and the Office of Public Liaison to relay parental concerns on the current draft bill. 

It is also important to me that you know a little something about my son’s recovery from autism.  Charlie was 4, nonverbal, wearing diapers, and had severe behavioral problems when he was diagnosed with autism. We were told to start accepting the fact that our child would need to be institutionalized at some point, probably around puberty. 

My husband and I did not accept that as the final word on our son; you see, Charlie was not born with autism.  He was born a happy, healthy baby who developed on time until he hit 14-18 months old.  At that point our talking baby lost his language and eye contact.  He lost interest in his surroundings, in his family. He started down a dangerous path of elopement (escaping from our home). His face and ears were bright red.  He had constant sinus infections and bloody noses.  Then came debilitating migraines and seizures. Probably the most disturbing symptom was the diarrhea. Charlie filled 6-10 diapers every day - foul smelling, running down the legs, like nothing I’ve ever seen before (and I have two older children). He began having chronic coughing, which lasted for SIX YEARS before a doctor was finally able to figure out the problem. 

As my husband and I researched autism, we stumbled upon Generation Rescue and a local autism center. We attended workshops and learned about biomedical interventions. We took our son to see a DAN! (Defeat Autism Now) doctor.  That doctor had us immediately pull gluten and casein from our son’s diet.  Within one week Charlie was saying words.  A short time later the doctor had us start Methyl B12 and our son began looking us in the eye and speaking in sentences.  

As we continued to test our son, we discovered he was DEFICIENT in most every essential vitamin and mineral a human body requires in order for its brain and body to operate properly. Our son? In America? Nutritionally deficient? As if he were starving, even though he was eating? It was almost too much to process. 

We then made the decision to seek out the very best DAN! doctor we could. We’ve worked with this doctor for several years now. Our son has made incredible gains. We also chose to work with a very well known pediatric gastroenterologist. He scoped our son and we were shocked and angry to see the damage our son was suffering with, from the esophagus all the way through his GI tract. This doctor has been treating Charlie’s various GI diseases and we have seen great improvements. 

Our son is on the road to recovery, he will have a chance at a full and happy life - a chance to be a productive member of our society. And by the way, 90% of the treatments we have used for our son (which were ALL successful) were NOT covered by our insurance. My husband and I are in debt so deep we will never get out. We have borrowed money from family members and sold off belongings to help our son. We don’t regret any of it because we have our son back. 

If we had listened to the diagnosing doctor all those years ago, Charlie would not have those opportunities.  If we had not had the CHOICE to seek out the medical care we felt was best for our child, our son would not have a chance at life. THIS is why I am writing today, to ask you to understand the importance of a parent having the right to make the medical decisions necessary for their children. 

I, and so many other parents of children with autism, are advocating for legislation that:

**Includes findings consistent with most up-to-date scientific investigations regarding Autism Spectrum Disorders emphasizing essential areas of promising research.

**Establishes a National Autism Executive Committee that would provide stakeholder input into research and policy initiatives and future research allocations made through Combating Autism Act appropriations.

**Advances research initiatives that help to identify sub-cohorts, biomarkers, and etiological factors including environmental and genetic through actual clinical investigations of persons with Autism Spectrum Disorder.

**Requires the establishment of continuing medical education in treating Autism Spectrum Disorders to further the quality of care and to reflect up-to-date scientific findings.

**Requires the evaluation and treatment for other medical conditions which may occur with autism, such as gastrointestinal, immunological and metabolic conditions.

**Requires insurance coverage for diagnostic, medical and therapeutic services such as speech, occupational therapy, physical therapy, nutriceuticals and Applied Behavior Analysis in addition to other medically necessary services when prescribed by a physician.

Please help us help our kids.


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