Tuesday, October 25, 2011

"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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  1. A very well deserved award my friend!

  2. Thank you, Lou! Once again, thank you!

  3. Congratulations on your much deserved award. Thank you for putting what we all feel at times into a video to express it to the world. I am a firm believer that we WILL change the world as long as we continue to raise the chorus! YOU are helping to do that! This is a beautiful post, written by a very deserving Warrior Dad!

  4. Lou-

    You are inspiring to all of us who "fight the good fight". I have a child with autism who is now in College. He was pretty severely affected, and am blessed he responded to therapies. I am now trying to "fight the good fight" for others affected with this disorder. Thank you for showing us that one person can make a difference! Imagine if we all got together in unity what we can all do? :)

  5. Congrats to you! I agree, it's well deserved. I still cry every time I see that video, and I've easily watched it a dozen times or more. Thank you for spreading awareness and hopefully a lot of compassion, empathy, knowledge, and understanding too.

  6. Thank you, Lou for making such a moving video that really says what so many of us are going through. Your award was well-deserved. Congratulations!

  7. First I would like to Thank You for your "Fixing" Autism it is very moving that shows how much you care your daugter is very lucky to have you! I am a board member of the Autism Resource Foundation and a member of Making Connections Networking Group. We do presentations for others on Autism from time to time and hold a monthly meeting for families affected by Autism and the community. I would love to be able to show this at the end of our presentations and at our meetings from time to time but wanted to check with you to ensure that it would be ok if we did so?

  8. No problem at all Norma, feel free!

    Thanks for the kind words and the potty suggestions!

  9. Absolutely well deserved. Your video may have been silent, but after seeing it I'd be willing to say that most parents will not be able to be. Thank you.

  10. That video was amazing. It really touched me, and made me want to share it with everyone. Thanks.

  11. Congratulations and very well deserved!!

    **the standing ovation from bloggyland continues!!**

  12. Hi Lou - I've never commented on your blog but I have shared your video countless times with others. Every time I watch it, I am moved to tears and reminded of why I go to work every day.

    Thank YOU for having the courage to share the video that sparked this movement you have going on. The award you received is very well deserved and I look forward to following your blog in the future!

  13. Lou, first of all congratulations on the award you truly deserve it.
    I have shared that video with many people and continue to do so. I know I have said this before, but it is so nice to have a father's perspective out there Thank you so much for sharing your experiences. You are one of my autism Super Heroes and have inspired me to blog as well.
    Keep up the great work Lou.

  14. BEautiful. :) Congratulations of your award.. :) Tears...I am so happy for you all and so grateful for what you are doing.. :)

  15. Just saw your video... and I was incredibly moved.

    I have a little guy with autism. Watching your video... made me feel like someone else understood what life was like for me.

    Also... I'm hearing impaired... so I'm glad I was able to read your cards instead of having to try to read your lips.

    I will be checking in on this site more often...now that I know it is here.

  16. Congrats on the award - your video moved me to tears as well (at work, no less...) I especially relate to the part in the video where you are obviously emotional about receiving the diagnosis of Autism. That day (the day of diagnosis for my almost 4 year old today) was one of the saddest days of my life. Thanks for sharing and letting all of us parents of Autistic children know that, yes, there are others out there fighting the good fight, and that we're not alone in this (monumental) struggle, which we are required to fight each and every day (even when we don't feel like fighting, or when it seems we're too tired to go on...)

  17. Congratulations on your award it is a very powerful video. I'm a Mum in the UK who has and will continue to fight for my son and help others too. You are clearly an amazing Dad, you have a beautiful daughter. Thanks for sharing.


    (not sure how that translates in the states but its nothing dodgy!)

  18. You say "autism will cost the nation $35 billion per year". Take a trip down to Silicon Valley. If you can prove that Bill gates is neurotypical, I'll donate $1000,000 to Autism Speaks. In fact, you can probably thank someone with autism for giving you this platform to spread your ridiculous tripe. I can guarantee that part of something you used to make this video came from someone autistic.
    You don't love your daughter. Stop pretending. You love the person you hope you can change your daughter into. You're a disgusting "human being" who is proud to receive an award from an organization that openly promotes genocide.

    To people who want to hear about autism from real autistics, these are great sites:

  19. I watched it & shared it all over facebook.. this is also our life. We have a 5 yr old autistic boy & it rings true for us too! there needs to be more done for our kids..maybe all schools need to incoroprate ABA classes for autistic children. We need to ensure our kids have a future so we must continue to fight for our kids

  20. Many High-functioning Auties and Aspergians will not agree with "fix" part. But for the majority of us who have children with "classic autism"...THEY STRUGGLE AND WE WANT TO FIX THAT!
    To the woman who argued about siblings and having more kids: that was pretty harsh and uncalled for. And I will be nice and end it there. Go Lou!!

  21. Congratulations. It's great to see you being recognised for fighting for your daughter. You moved me to sobbing tears as I realised the silent struggle we have been facing for the past 10 years with our beautiful youngest son... He has just been diagnosed with ASD and is finally going to receive the help he needs. God Bless you.

  22. This was such an AMAZING video! What a great job. I was in tears! Thank you for being so raw and honest.