Posted by: debstake | April 11, 2009

Autism Awareness Month


aprilawarenessWell another year has come and another April is designated as autism awareness month. Jenny McCarthy, Jim Carrey, along with others were on Larry King live the other night. And more people have been informed of the dangers of vaccines. That is grand. Maybe there will be less babies added to the autism rolls.

But what of those on the rolls now? How does this awareness help our kids who are living and struggling with this very physical (as opposed to mental) issue? In the almost 9 years since JR has been diagnosed I haven’t seen much enhancement of services or funding for existing services. Autism Speaks says they raise money in part to aid the families who; financially  need it. So far our family hasn’t gotten any aid. Has anyone else?  My husband is the primary bread winner and we are surviving on less than $30,000.00 a year for a family of 4. I think we would qualify for financial need.The only organization that has helped us in the slightest has been National Autism Association (NAA) through their helping hands fund. They themselves are hurting for funds but they managed to afford us a one time $1,500.00 grant to off set the cost of JR’s supplements. And I am so grateful for that funding.

Pennsylvania passed  a law last year referred to as Act 62. It is also known as the autism insurance bill. This bill will force insurance companies (that it applies to; ours apparently is not one of them) to cover up to $36,000.00 in APPROVED (in other words no  supplements, no HBOT, no Chelation, nothing that is actually going to recover our kids in other words) therapies. Granted these approved therapies are very important and these kids need them. However, it doesn’t address the fact that supplements do work for our children and they need them as well.

With the negatives associated to the law I still supported it; primarily based on the belief that some day the medical community as a whole will come to realize and understand how important the supplements are in relation to our children’s health. In other words I have HOPE that someday the welfare of our children will become the driving force to making them healthy. Not the money associated with the push to that health. We all know it’s money that is keeping these resources from being utilized.

Today I came across something that fans those flames of hope like nothing else could. A young woman aged 14 with autism who is non-verbal expressed her admiration and love for Larry King. The piece is called appropriately “LOUDER THAN WORDS”. Her name is Carley Fleischmann and her letter can be read HERE. The video clip can be viewed HERE. Reading her letter and viewing this segment helps me to realize the importance of hope and the desire to keep pushing for a better tomorrow for our children. Thank you Carley and Larry for your dedication and devotion to our children.

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Responses

  1. Geoff,
    Thank you for the compliment and for the invitation. You will be hearing from me directly.

  2. Hi Deborah,

    I’m a physician and former faculty member at Harvard and Stanford Medical Schools. I discovered your blog while looking for the best health writers on the web. I reviewed your posts, and think your writing would be a great addition to the Autism & Autism Spectrum Community on Wellsphere, a top 5 health website that has nearly 5 million visitors monthly. If you would like to learn more about how you can join our Health Blogger Network, republish your blog posts and be featured on the Wellsphere platform, just drop me an email at dr.rutledge@wellsphere.com.

    Cheers,
    Geoff


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