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Happy Birthday to all of us!

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Happy Birthday to all of us!

Dana Brazil is changing the world -- our world.  When I first started working with Dana, the director of education at Dr. Phillips Center for the Performing Arts, the first thing I realized was that she was a culture changer.  Her drive is matched only by her innovative ideas.  In my first week of work, two months before we opened the arts center and four months before the school of the arts opened,  she said to me, "You're from here and you're a writer. I got a grant for a sensory friendly show with Spencer's Theatre of Illusion and a workshop with Kevin Spencer for kids with special needs.  I need someone to write a social story and I need a connection to the autism community. Do you know what a social story is, when can you have it written by and do you know anyone in the autism community?" 

"Dana, it's your lucky day," was all I could think to say. I'd been writing social stories for Henry since he was 2 before I knew what a social story was.  It was just the most effective way to get him to comply.  Tell him a story and put something in his hands to remind him of what we said we were going to do. 

As it is with Dana, we went way above and beyond. We produced a book and a video with a cast from Access Charter School.  The sensory friendly show, quiet room and workshop was staffed by OCA with an invited audience from OCA and Access.  

As it also is with Dana, I got sucked into her vortex of ideas and visions. "If you met Silvia Haas, the two of you would change the world," I said.

"I don't have time for that," said Dana. Which was true. She didn't have time to meet Silvia, the executive director of OCA, much less change the world with her. 

But these two women are those kind of people. They drive ideas. The push agendas. They move organizations forward. They do it with their passion, their big ideas and their ability to motivate others and work tirelessly themselves.  Silvia created OCA because she needed it for her son Matthew and the rest of us are along for the ride. Dana is creating an education programing that is world class to match a world-class performing arts center and in her first year the Broadway League (that's the Tony's, yes) gave her an award for her innovative outreach. Our job is to get out of her way or get onboard for the ride. 

So I set up a meeting. It got canceled. I set up another one. It got rescheduled. Finally, there was a need and an idea. What if Dr. Phillips Center, who is partnering with Florida Hospital on arts and wellness, helped produce OCA's Theater Week as part of our summer programming? The campers would rehearse an original play and build the sets & props from their location and come to the arts center to put on their performance.  

They met. They connected. They produced Theater Week. Now it's an annual thing. Dana needed more. They started a Theater Club. Dana had Second City lead an improv workshop the the Theater Club.  Then she created a residency with Pilobolous @Play for the club. Silvia became the Confirmation Sponsor for Dana's kids. Dana's son is nicknamed Ricky Haas. I think they talk on the phone daily. Silvia expanded the vision for the OCA village to include an auditorium and updated the plans. 

Dana's vision now includes a theater company of neuro-typic actors and actors with autism. They're not a club anymore. They are the Running Man Theater Company. She wants to tour. 

For her birthday she started a fundraiser on Facebook to donate to the Running Man Theater Company in lieu of gifts.  It's what I want for my birthday this year too. Happy Birthday to me. To Henry. To Dana. And to you. Throw a party. Get on board, because Dana's vision is coming your way and you need to get ready for your world to change. 

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We'd Rather Be Awesome Than Perfect

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We'd Rather Be Awesome Than Perfect

For Mother's Day, here's note I wrote a new mom of a child with a disability.

Hi Mama. Sooooo, it’s awful. It's wonderful. It doesn't matter at all. It totally matters and changes everything. It's exhilarating and you can do this. It's exhausting and some days you just can't.

It's about her and carving the best path for her to thrive. It's about you — what you can do and letting what you can't do be ok. 

Don't be fooled by the urgency of disability — you are in charge, not it. She is more important than it. You'll know when there is a true emergency. Living with disability feels like an emergency all day long. It's not. No need to panic. 

I live on autism time — x4 as long and x4 the effort. Figure out what your disability time is and make sure your expectations for yourself and her are at that timetable so you don't go insane. 

Remember you are a family so what's good for you, your other child, and your husband are also what’s good for this child. This disability does not trump all needs at all times. 

Release the need to cure. You have your own disabilities that you know how to manage, I have mine, Henry has his. I had to give up making every minute about curing him. And curing me. It's an imperfect life. Perfect is per some standard that has nothing to do with us. 

And we'd rather be awesome than perfect.

Love you & your beautiful girls. Let me know how I can help you.

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I have a dream, a song to sing

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I have a dream, a song to sing

Sitting on my balcony on a Friday evening an unseasonably cold wind pushed my hair across my face. I could hear music from the neighborhood two blocks east. Every few months it seems like there’s a block party with mostly Latin music and if the wind is just right and the humidity is just so, the music carries to my neighborhood. I’m such a hermit that, I’ll admit, sometimes it irritates me. I just want my quiet and my birds and my little bit of sky. Most often I can reach back to the Navy family block parties from my childhood and then I can imagine the dancing, the kids running around, the women laughing, the men drinking beer, and I relax and let it be a secondary sound to my quiet.  

On this night, as I wrestled with a vision for my next chapter the wind was particularly strong and driving the music right onto my third floor balcony. The strange cold air made it sound like it was coming from our building. It was so loud it could have been coming from my own phone. 

I gathered my things and then I heard a familiar voice. It was the voice of Agnetha. The words I knew, but had forgotten that I knew them. But of course I knew them. 

I have a dream, 

a song to sing

To help me cope 

with anything

If you see the wonder 

of a fairy tale

You can take the future 

even if you fail

I belieeeeeeeeeve in angels

Something good 

in everything I see

I belieeeeeeeve in angels

When I know the time is right for me

I'll cross the stream, 

I have a dream

I thought surely the DJ would mix it into another song.  A dance song. But it went on. So, I stood and leaned over the railing. I knew what was coming next. I sang into the wind, joining my voice with the voices of my childhood friends.  

I imagined Benny & Bjorn writing those lyrics in their archipelago stuga. I imagined the call to our school.  Benny.  Bjorn. Agnetha. Annifrid! Can you imagine it? The children on your last album, the children that joined you onstage in Stockholm and Goteborg, are grown. Most of us 50, some not yet, some past it.  We are older now than you were when you recorded that song. And the joy and connection we had then — to each other, to that music, to that moment in time, to that city — gives me hope. It fuels me still today. The tears dripped into the lines around my eyes, thinking of the photo of me in the dressing room in the basement of a Stockholm stadium, my cheeks covered in acne. 

I have a dream, 

a song to sing. 

To help me cope, 

with anything.

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