"Fixing" Me

When I made the “Fixing” Autism video, I knew it rang true for me. I wasn’t sure how others would perceive it, but I thought it might help other families affected by ASD know that they are not alone. Even more importantly, I hoped that people outside the autism community would see it and perhaps understand what it meant to be touched by the disorder.

The feedback to my “Fixing” Autism video has been astounding. When I made the video I thought that I had something special, but I thought it was special for ME. I put the video on YouTube because I wanted others to see it, but I figured viewership would be limited to my Facebook friends and some people who might stumble upon it if they did a YouTube search for “autism”. I shared it a couple of times on the Autism Speaks Facebook page thinking that people visiting that page would understand the frustration and anger that inspired me at 4:00 AM to silently scream at the establishment.

There is a whole community out there of families eating with the lights off, trying to figure out a time to vacuum while their child is away, debating on whether or not to go out to eat at a public restaurant for fear of being a nuisance, explaining to their neurotypical child that they can’t play outside or go someplace because it is too difficult to keep an eye on them and their autistic sibling… and even staying up until 6AM with their autistic daughter and surviving on no sleep. I knew that they would understand my message.

Never in my wildest dreams did I think that Autism Speaks, an organization that I believe so deeply in, would put their full support behind my message. Then to be contacted by Mike Wasmer of Autism Speaks to be told that they wanted to present me with an award for my video floored me.

With Lorri Unumb and Mike Wasmer

I was invited to the Autism Speaks Annual Law Summit to be presented the Speak Out Award for going above and beyond in raising awareness for Autism Speaks through the media. I was moved to tears. I remember holding Bianca and telling her about the award. She didn't care to pay much attention to me at the time, but I know she understood.

The summit was held in Salt Lake City. The beauty of the weather and scenery was outdone only by the beauty of the attendees. Outside of the Walk Now event in Chicago, I have never been surrounded by so many people fighting the same fight. There was a mutual understanding that presented itself without verbalization as I met each person that was so calming, that despite being so far away from my family, I felt as though I was at home.

At the end of the first day of the summit, I was presented with the award by Mike Wasmer. It was an incredible honor to have another autism dad give me the award because I know that he gets where I am coming from. He also shared with me that my story closely parallels the journey that he has taken with his child.

Alison Dyer changed my life forever by
profiling my blog on the Autism Speaks
Facebook page for Father's Day. In two
hours I went from 300 views to 3500 views.
It energized me and gave me the strength
to continue blogging and make the video.

I learned such vital information on the differences between fully funded and private insurance that I now understood what is hampering our ability to get Bianca the ABA that has been prescribed for her and that she so desperately needs, yet we cannot afford. I learned of the arguments used by the insurance companies to try and prevent paying for ABA. I marveled at the work that the FABULOUS political faction of Autism Speaks led by Peter Bell and Lorri Unumb were doing. Their tireless efforts to pass healthcare reform in all 50 states are awe inspiring.

When my “Fixing”Autism video was played, it was one of the most moving events I have ever experienced. I had only watched the video in full one other time, and that was after I had edited the elements together. As the video played I could hear sniffs and sobs, and that was all she wrote. I joined in as well. The ovation that I was given after it played was overwhelming and really got the waterworks going. When I went up to accept my award after some incredibly kind words by Mike, I was a little more composed, but not much.

Here is the video of the award presentation:

Now for the embarrassing part… I was so emotionally drained and self-conscious about droning on too long that I cut my speech short and didn’t thank my family. So if you would indulge me, I would like to share with you what I had written:

“Thanks to my parents for all of their support; to my beautiful wife Elsa for hanging in there on this ride, life can knock you down sometimes, but we have been fighting back and trying to not let it destroy our marriage. Thanks to my kids Sofie and Luis. They are the greatest siblings in the world and they fill my life with laughter every day. And to my beautiful Bianca… she is a priceless gift. In 6 short years, she has taught me more than my previous 34. I am a better person for her being in my life and I love her without condition.

In closing I just want to let you know that I am aware that I am preaching to the choir here, but the choir has a very important job. It is up to the choir to fill people’s ears up with music and often times to move people to join the congregation. Let’s make certain that when we leave here this weekend that we are making noise, not just to those that are already in our flock, but to the world in the hopes that our numbers will rise.”

Thank you again to everybody at Autism Speaks for the experience of a lifetime.

You have helped to fix me.

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

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