Viewing entries in
autism awareness

Happy Birthday to all of us!

Comment

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. 

Comment

Adele

1 Comment

Adele

It was one of those weekends, in which Henry was being 20.  Maybe not 20, maybe younger — it’s really difficult for me to gauge what age appropriate behavior is in him or, honestly, in myself.  I’ve been an entertainer so long that making faces, engaging children in strollers or making jokes to adults sharing a line with me seems completely appropriate. It might not be. 

People ask me all the time what Henry’s age is and by that they mean his understanding.  Well, it’s all over the map.  A quality of Autism or a quality of Henry?  The apple doesn’t fall far from the tree, so I’d say more the latter.  The pronounced delays in intellect are certainly autism but the wisdom beyond his years, the joyful approach to strangers, and the ability to command a crowd with his sheer will could be counted as ages 65, 3, and 42, respectively.  Those actions don’t seem very autistic-y to me. They seem like him working the autism system so he can behave as he chooses — he can take the stage at any event, even ones he’s not booked for, because the organizers usually find him charming in his autism. But I can tell you every actor is looking for a gig and we’re ready to rush the stage should there be a lull in your program.  He can also approach a total stranger in a store and shake their hands and adorably say ‘Congratulations.  I’m Henry’.  The stranger receives this from him because of his autism. But I'm not convinced that's autism. Sometimes the need to connect is completely overwhelming and I’d love to reach out and say to someone “I’m Alice!  What’s your name?” I just don't because I have social boundaries.  

We were having one of those days.  He was on fire. So excited and excitable.  We went into the Publix and he was talking and smiling at everyone.  In the check out line he was beaming, cheeks bright red, a giant grin on his face.  “Hi! I’m Henry!  What’s your name?”  He said to the couple behind us.  They introduced themselves and he shook hands.  First with his left then with his right.  He’s working on right handed shaking right now.  A man we greeted the same way in the McDonald’s in Northern Idaho instructed him, “Henry, I’m glad to meet you and now I’m going to show you how to shake.  It’s always right hand.  Let’s try it.”  This random act of mentoring did more than a year of instruction from his..ugh…mother.  

This day in Publix, he was like the mayor in a founder’s day parade — waving and smiling and everyone was eating it up. Until we got in the car.  Suddenly he turned.  He was absolutely disgusted to be with me.  He wanted to go to dad’s.  No more mom.  Sorry bud, it’s Thursday and we have 3 days together.  You’ll see your dad later.  He refused to look at me.  When we got home he wouldn’t speak to me.  He locked himself in his room and responded to any requests of mine with a growl through the door.  Well, if it’s going to be like that then the fun is over for me too.  It’s time to brush your teeth.  Wash your hair.  Clip your fingernails.  Do your homework.  Record a story with me.  Vacuum the kitchen.  I made random irritating requests like this every hour or so.  

Now, many are disturbed by this behavior from their child.  I am not.  I think it’s age appropriate.  What 20 year old wants to hang with his MOTHER?  Growl. Sigh. Stomp. I know if I was the mother of a neuro-typic child I would be bothered by it, as I see my sister-mothers struggling with the rudeness of their early adult children, but for me it’s a celebration.  Another developmental milestone hit!  He hates his mother!  YAY!!!!  

Of course it does get disheartening and I do feel lonely for my boy but I remind myself that this is what pushing out from the nest looks like.  And we’ll both be in a group home together when he’s 50 and I’m 80, so I get it — he can’t push very far from me, so push what you can.  

We made it to Saturday night and it was time to go back to dad the hero’s home.  So much more fun!  So much less…growl, sigh, stomp, WHATEVER.  (Yes, he says ‘whatever’.) I dropped Henry off early because he does like to be alone and if i can accommodate independence, I try to.  So when we can, he lets himself into his dad’s house with his own key, 30 minutes before his dad gets home from work and locks the door behind him. On this day, dad’s neighbor was out watering her garden.  And just like that, after 3 days of disgust Mr. Charming re-appeared.  

“Hi!  I’m Henry!  What’s your name?”  He ran over to the fence to shake her (right) hand. 

“Hi, I’m Adele.”  

He looked right at me, enraptured.  “She’s a singer!”  The beam was back after 3 days of darkness. 

“Yes, now everyone knows how to spell my name,” Adele smiled back at him. 

“I’m going in my dad’s house to be by myself.”  

I could tell Adele was wondering what this situation was, so I prompted him — 

“Henry,”  I said, “Tell Adele who I am.”  

“You’re Alice” 

“Yes, but who am I to you?” 

He looked at me confused.  He looked back at Adele.  He looked back at me.  

“My….best friend?”  

Adele put her hand to her heart.  I put my hands on his cheeks and he put his forehead to mine.  

Yes, baby. That’s me. I’m your best friend.  

 

1 Comment

Wilderness

Comment

Wilderness

Every year Henry and I go on vacation to my dad’s summer home in Idaho.  Dad’s grandparents bought the property in 1937.  There are LOTS of stories. 

In the original cabin, there was a wrap-around porch where we all slept.  When the original cabin finally sank into the ground mom and dad had a nice, solid, winterized house built with 2 bedrooms, futon, cots and a fabulous deck that’s best for coffee or wine and reading.  

It took me several years to bring Henry to Idaho. I was afraid.The lake is right at the bottom of the stairs. The woods are next to the house. The Methodist camp is right behind us. The Lightning Bar is up the street. Any number of dangers await a small child with a communication disorder. 

Finally, I manned up. He was almost 10. My dad and my brother were going to be there at the same time and so between the three of us, everything should be OK.  Right?  Right?! 

When we got to Idaho, Henry’s response was the same as ours always is — total awe.  From the cabin with the many beds (Henry loves beds, for a special treat take him to IKEA where he will get into every single bed on display) to the deck on stilts on the hill to the stairs that lead to the rock-filled beach to the lake that stretches across to a mountain.  With sunny days, cold nights and sweater mornings it was as much heaven for him as it is for all of us. 

Each night he slept in a different bed (see IKEA note above). By the fourth night he exhausted his options so I put him in the first night’s bed under the window.  We woke up the next morning to find him on the floor in the front hall wrapped like a burrito in the rag rug that Great Grannymom made with her own hands.  

This got him a stern talking to.  I wrote a note for him that he was not to do that again.  So he didn’t.  The next morning we couldn’t find him anywhere.  I ran around the house screaming his name the panic rising in my stomach while dad and my brother Charles did the same screaming and running.  Then we noticed the antique handmade rag rug was gone from the front hall.  Find the rug, find the boy. 

He was under the stilted deck that provides a nice sort of shelter, wrapped in the rag rug, now more like a sleeping bag. 

Ah, ok. “Do you want to sleep outside?” Anytime I ask him a question that he has clearly been trying to communicate for a while, I get a ‘Well, duh’ look.  I’m the one with the communication disorder.  He’s been quite clear, it’s me that isn’t getting it.  

That afternoon we all drove up to Cabela’s, a store we suburbanites do not frequent, and Henry picked out acamouflage sleeping bag that came with it’s own canteen and flashlight. 

I was still pretty much freaking out about him sleeping outside. There are moose, deer, skunk, raccoons and Methodist teenagers out in this wilderness.  Charles & I devised a plan with the sleeping bag on top of the air mattress on top of the deck, the stairs to under the deck blocked off.  While we were setting up we sat down on the air mattress and looked at the sky, filled with stars.  

“Well, we’re idiots,” said Charles. 

Pretty much.  We missed out on this for the last 40 years.  

That first night I didn’t sleep much, my dreams haunted by Far Side bears eating campers.  But it’s been 10 years and from that year on Henry always sleeps outside, now in a tent in the yard with an extension cord for his iPad.

Henry’s ability to communicate his wants makes me want to be as clear and bold as he is about how I want to live.  

Comment

Wear Henry's Catch Phrase!

Comment

Wear Henry's Catch Phrase!

Henry had a great run on Monsters in the Morning.  For his last appearance for the summer, we had some t-shirts made.  The multi-talented Ian Suarez from Dr. Phillips Center  designed the shirts for us and Impress Ink did a quick turnaround for us so we could bring the gang at Real Radio 104.1 as a thank you gift. Carlos & Henry are rockin' those shirts! 

You can have your very own I'm Thinking About Me t-shirt!  We're doing a campaign for the next two weeks and a portion of the proceeds will go to the School of the Arts.  So get a shirt and enjoy telling everyone the catch phrase "I'm Thinking About Me!" 

Get your T-shirts here: TeeSpring Wear Henry's Catch Phrase 

Comment