Tanners Dad's Blog
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For One Day in December there was Peace on earth and Goodwill towards Families dealing with Autism and Health Care
- Posted on 12.24.08
Yesterday we wrote a short book about Autism and Health Care reform. 72 active participants and who knows how many watching from work, let their fingers do the talking. We typed over 524 comments during the 24 hour period. By my calculations that was about 20,000 words. A friend that is a writer told me that would be a pretty nice short book.
Although the substance was very meaningful and impactful I will analyze that a bit before I comment. Today I just wanted to say thank you to all. To my naysayers, that said it could not be done, I want to take a moment to gloat ( that is word I do not think I have ever written). Anyway not in a mean way, In a positive way. The naysayers said it would be impossible for this parent who believes his child was vaccine injured to bring together all the factions and stakeholders in the Autism Health care reform debate and not have nasty interactions. I got one post during the event on my blog that clearly states their position...
AutismNewsBeat
Sen. Daschle,
Thank you for inviting us to this important discussion. The concerns over childhood autism extend beyond the basic questions of caring for and accommodating children with autism spectrum disorders. As you may be aware, a vocal and disruptive minority of parents, aided by Hollywood celebrities, are using the internet and the nation's news and entertainment media to link autism with scheduled pediatric vaccines. Let's be clear - there is no credible scientific evidence that associates one with the other. But this persistent myth is discouraging some parents from immunizing their children, and as a result we've seen measles outbreaks at rates not seen in over a decade. This is inexcusable.
We've also seen the emergence over the last ten years or more of an autism "cure" industry that preys on parents. Unproven treatments with little or no chance of success, such as chelation, hyperbaric oxygen therapy, and anti-viral drugs, are draining family resources, and sending a message that children with autism as toxic or "vaccine injured". Be very mindful of these ruses as you consider what kind of health coverage the government might provide to parents of children with autism. Health care fraud is an $80 billion a year racket, and the bad guys know about autism.
Thank you, and congratulations on your party's success in the fall elections. I very much look forward to a return of scientific inquiry free of stifling ideologies.
12.23.08|11:08am
My first reaction was to flag it as offensive. This is like walking into somebodies home and crapping on their favorite chair. Now though as the debate unravels and the trustworthiness of politicians, wall street tycoons, nobel prize committees, and pharmaceutical companies are called into question, to me it looks like a trophy to hang on the wall. When the dust settles one of us will regret the exchange.
Other than that couple of paragraphs we figured out that Health Care Reform when it comes to Autism is a huge issue. Most of the parents feel like the Madoff Investor that just took his own life. We have lost more than 1.5 Billion dollars ( our child ) to what we feel was a preventable, treatable, or condition at minimum deserves respect and fair treatment. Many report that treatment is sporadic at best, discriminatory across the board, and in some cases criminal and morally wrong. Secretary To be Daschle remember that at this time of year ( really every day ) we should be looking out for the meekest of the meek. As a group, People dealing with Autism are kind gentle souls.
My wife thinks I accomplished nothing yesterday. I had been studying non stop for my Insurance producers exam ( I am still unemployed ) and past the four hour test Monday. Yesterday was 24 hours of celebration, education, growth, and hope for the Autism community. We came together like never before under one roof. It is possible people to join in a united voice for change. For individual moments put aside agendas and come together in hopes of better treatment and lives for those on the Autism spectrum. Thank you all again for your support.
The day did have a humorous side. I woke up and Twitter had shut down my twitter account for spam like activities. I guess if you put retweet more than a couple of times in a post the bots go nuts. So it took an hour to figure out how to get into the conference I was supposed to be moderator of. Then the weather was horrendous. We had ice, rain, and snow. Mid afternoon the power went off so I lost about two hours of attendance. All in all though on the behavior and participation side I am elated.
One day in the grand scheme is only a drop in the bucket. Hopefully we will continue to help as the transition team develops a nationwide plan. We pray that the plan will be fair to our family members with autism. Here is a list of things you can do to help. Please phone a friend, email, or twitter these ideas. I learned yesterday the caregivers need a mental break before the world breaks them.
What can you do today...
If you are a parent... Love your child unconditionally. Do not let your child feel they are any less because they cannot communicate the way we do or look after themselves. Do not forget to look after yourself and your significant other. ( If you don't have one find one...There is someone out there for everyone. You deserved to be loved also). Join a church. Speak to your friends. Keep up the good fight.
If you are Friend... If you have resources please consider supporting Generation Rescue as they move the agenda towards services and support programs. If you do not have financial resources provide respite services... Babysit, go with a parent to the grocery store, or running errands. Be there to listen.
If you are in the medical community it is time to wake up and do something...
If you are in the insurance industry it is time to make the people responsible pay...
if you are in the media it time to tell the truth...
If you are in the government it is time act...
If you are in education it is time to educate...
If you are in a religious community it is time to rally the troops to support families...
If you are in the New York City Office of Autism Speaks... remember that $50,000 you took from my community this fall could have helped to pay for my sons therapy this year.
If you are in contact with amanda peet and have a child with Autism invite her over to experience our lives first hand and but out of our childrens and the future of others children.
If you are impacted by autism (that means you are part of the human race) Join me in the fight. Join causecast with your own cause or mine. Make a difference in our world. now. State your change! Then make it happen.
If you happen to have some sleeping pills, sleep ideas for children with autism, or want to come spend the night let me know.... I need a nap.
If you are a stakeholder in anyway when it comes to Autism please join us on twitter on Tuesday Dec 23rd. #HHS We will try to make a difference for Families Dealing with Autism. Obama wants to know....
If you are in the pharmaceutical industry it is time to pray...
People it is just time to deal with Autism....
http://www.causecast.org/member/tanners-dad
Related causes: Community, Environment, Health, Human Rights, Youth
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