This post is by Phillip Hain, the West Region Director for Autism Speaks.
On December 1, the Los Angeles Chapter held the inaugural Blue Tie Blue Jean Ball. In looking back at what made the event so amazing, I attribute it to four key elements: vision, focus, determination, and teamwork.
The first was having a vision. In a city the size of Los Angeles, there is an abundance of fundraising dinners that do very well, but often people feel obligated to attend rather than having a true sense of wanting to be there. Years ago while volunteering for Cure Autism Now before it merged with Autism Speaks, I remember helping get ready for an art auction when a gentleman walked into the hotel and wanted to know where to go for an event he was attending with his wife which was taking place that night. I asked what it was for and he said, “I’m not sure. Something to do with kids.” Yes, it was nice to hear he was there to support us, but I also realized that he would not remember the organization the next day.
That took us to the element of determination. Our committee was looking for an event which people wanted to attend because it was fun—and they would look forward to being there again. After settling on a theme of music, we came up with the Blue Tie Blue Jean Ball name because it reflected the ideas of enjoyable, unpretentious, memorable and genuine. We also realized those are the adjectives often used to describe our children affected by autism, making the synergy and concept even more significant.
Because we were working on a shortened timeline, we had to operate as a team. The committee was just the right size to have enough people with contacts, but not too cumbersome to become unwieldy. We chose sub-chairs to handle the various major components. There was no task—big or small—that anyone would not take on. Whether it was getting things donated, pitching sponsors, creating a Facebook page, or stuffing envelopes, everyone pitched in where they could contribute. The group stayed on course and worked collaboratively. Bouncing ideas at a committee meeting where someone suggested it would be great if we could get a jean company as a sponsor resulted in another person saying, “We have a contact at Guess whom we can call.” The result was having the Guess Foundation as the presenting sponsor—for a first year event.
Needless to say we had to focus. One member had strong contacts in the music industry who worked on getting a major name to headline the show. Others started getting cool auction items to fit the music theme. We ended up with really interesting things, such as a bra signed by Fergie, an autographed guitar from Eddie Van Halen, passes to Lollapalooza, and tickets to an Elton John concert in Las Vegas plus an acrylic piece of his piano.
So it wasn’t an accident that over 700 people packed the House of Blues on the world famous Sunset Strip to hear the incomparable, beloved and ever gracious Sarah McLachlan sing some of her biggest hits. She was introduced by autism mom and Grammy Award-winning singer Toni Braxton. The show was hosted by comedian Sinbad, who also handled the live auction with humor and zip. Other music performers were “American Idol” contestant Brooke White, Lucy Schwartz and Diane Birch. Attendees included Autism Speaks National Board Member Holly Robinson Peete with her husband Rodney Peete, Matt Dallas, J.K. Simmons, Mark Salling, Ed Asner, and “Parenthood” cast members Mae Whitman, Sarah Ramos, Max Burkholder and Miles Heizer.
Special guests actor Ed Asner and Lisa Carling from the Theater Development Fund!
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Ido Kedar is a fourteen year old 8th grader in all general education at his local middle school, which he attends with the with the support of an aide. Ido is also non-verbal and communicates via letterboard (unassisted) or dynawrite. He was not able to demonstrate that he understood language fluently until he was age seven. It took several years after that to convince the school district to remove him from his remedial autism class and since, he has taken off running.
“I am here to represent the point of view of people with autism who don’t speak. Some of you might be parents of non-verbal people like me and stopped believing it was possible that your child could ever learn communication or even to understand.
I don’t doubt that experts probably told you that it was false hope to imagine that your child could talk. Well, I don’t talk but I still go to regular middle school in regular classes and do regular schoolwork, and I get good grades. I tell you this, not to brag, but to give you hope.
I don’t need to talk with my mouth. It’s too hard. But I’m able to communicate thanks to my letter board and dynawrite. It was a long journey to get to here from where I started. I had years of silence and rotten frustration. I was totally not able to show people I understood, so I suffered inside while my specialists chose wrong for me.
It was the worst, and I know it’s equally challenging for parents too.
I want people to know that not speaking is not the same as not thinking; that poor fine motor is not the same as not thinking; that impulsive actions are different than not understanding right from wrong; that poor facial affect is not the same as not having feelings; that boring people to death is denying them life, liberty, and the pursuit of happiness.
But here’s my hope. I went from so bored in school in remedial education when I couldn’t communicate to a diploma path in high school next year. How, is the story of the potential in your kids.
Teach them interesting things. Read them age appropriate books. Talk normally to them. Not, “go car,” “say hi,” “good job.” I believe many autistic people are understanding inside and can’t show it. To be talked to like a baby is so frustrating.
The letter board was my freedom. This is it.
It takes a while to learn how to use it, but it’s worth it.
Communication is the most important thing.
I used to dream of talking, of course. But I am not free because I talk. I don’t talk. I am free because I can express my ideas in pointing to letters, in typing, in my blog and in my speeches. I am not lonely now.
Autism is a deep pit. Don’t give up.”
The Los Angeles Chapter held “Acts of Love: Parenthood,” on November 4 that raised $100,000. Hosted at the Creative Artists Agency in Century City, California, the evening was a salute to Jason Katims. He is the executive producer of the NBC television show “Parenthood,” who received the 2010 Acts of Love Awareness award for incorporating an autism story line into the series.
Performers included “Parenthood” cast members Max Burkholder, Lauren Graham, Peter Krause, and Craig T. Nelson, plus Connie Britton (Friday Night Lights), Christopher Gorham (Covert Affairs), Stephen Tobolowsky (Glee), Lorraine Toussaint (Saving Grace) and Brian J. White (Men of a Certain Age), among others.
The event was attended by such personalities as Alyssa Milano, Matt Dallas, Maria Menunous, Jurnee Smollett, Milo Ventimiglia, and Autism Speaks National Board Member Holly Robinson Peete. One very special guest was a woman from Italy who loves “Parenthood” so much that she flew in from Europe just for one night to attend the show!
The audience was moved to laughter and tears about parenting—and the unique joys and challenges of having a child with autism—through music performed by John Doe, and readings from Erma Bombeck, Dana Carvey, Golda Meir, and Bill Cosby, along with several poignant essays written by parents of children with autism.
Many thanks to all who attended, and especially our major sponsors, Creative Artists Agency and NBC Universal Television.