My friend Sharon's letter...
I wanted to share this letter from my friend Sharon Rosenbloom - she and her son Joey recently attended the Syracuse Summer Institute and she tells one of their stories in her letter. Sharon is a wonderful writer; she wrote the book 'Souls: Beneath and Beyond Autism’ along with photographer Thomas Balsamo whose beautiful photos illustrate the book – some of you may be familiar with it. She is in the process of joining the community and hopefully she will be a member by the time this appears! (See photo of Rachel, Joey & Sharon below). Best, -Portia
It was, in a word, Amazing! I must share the experience of The Dinosaur.
We had not spent enough time with Dov and Joey was jumping out of his skin to see him. On Thursday night we planned to eat at The Dinosaur, a biker bar/restaurant that is world famous. (Bill Clinton comes as often as he can...in and out, just for the delicious BBQ) We went last year and loved it!
After Dov and Joey's rest, we descended upon Dov and Linda. Dov was lying on the couch and his mood appeared low. I asked him if he wanted to go to the restaurant with
us and produced his board. He typed no. I told him I would not accept that answer and did he want me to beg a little. He answered, yes. Within minutes, he was up and we were heading for our destination.
We took the Sheraton shuttle and I asked Dov what kind of music he likes. He typed with me "Hard Rock." This began a big discussion with the others in the van, and an ongoing conversation between Dov and I about what he knew about music. Linda added Jon's preferences and I begged the driver to indulge Dov please. A rousing conversation with the others in the van about Led Zeppelin and Dov's mediocre rating of the Who got the mood roaring! The gentleman next to us later told Rachael about his 7 year old with "mild" autism. He was completely taken and intrigued. Dov was now bright eyed!
The wait was 45 minutes and my request to please, perhaps offer us a table sooner as it was difficult for our guys to wait fell upon deaf ears. We went outside, where the sky threatened, to the "Dinosaur Bone Yard" (the beer garden). There, a young man swooped us to a table and offered us menus and an opportunity to order there. (?) He flirted with Rachael and fussed over Joey and Dov, beaming at us. (He later confided to Rach that his brother has autism.)
By this time, Dov was glowing! He and I discussed movies, rated the music (the blues) He sat proud and often smiling and ate VERY well, including Joey's mashed potatoes. Joey, on the other hand, paced nervously, sitting down on the filthy ground to rock. I was clueless as to why he was so tense until he jumped up, and ran at the sight of his new friend, Blaire.
I had invited a girl from LA named Blaire, her mom Sharla and her teacher Caitlin to join us. In a wheel chair, she was absolutely beautiful, a shining, smiling spark of light. She and Joey had taken an interest in each other. As Dov watched and commented, Joey used his Lightwriter to eloquently greet her with, "Boy you look great" and with great nervousness, ask Blaire to sometime really soon see a movie. Dov was beyond delighted! I ran interference from her table to ours, apprising Dov and Linda of Joey's progress with Blaire. As the drops began to fall and our guardian busboy found a table umbrella and filled Dov and Joey's cups with ice water.
Blaire uses a Lightwriter though has enough speech to admonish Joey, "Stop swearing" when his nerves got the best of him and he let out salty language. According to her mom, they were in the lounge at the Sheraton, where mom had decided not to go out, when Blaire stared screaming, "You said Dinosaur! You said Dinosaur!"
So off they went...just by coincidence finding us in the bone yard, and there being a table vacated just upon their arrival.
As we piled back into the van to head home, the rain steady on our heads, Dov was so full of smiles I thought my heart would burst. I quietly commented to him that girls love attention as Blaire plopped down next to Joey and he announced, "Claire (struggling to say Blaire) back off. And she answering "No Joey"
And the laughter and joy that ensued when Blaire admonished Joey to "Stop rocking" as she sat next to him, and he immediately stopped for the duration of the ride had us all chattering about motivation and autism! And when Joey order Blaire to "Stop using the wheelchair" as he gallantly held it steady for her, her mother cheered. (I believe that she too has osteoporosis and resists walking too much) Dov watched everything closely. When Blaire and Joey said good bye, I watched
Dov as Joey's Lightwriter read, "Please say you will be forlorn to say good bye" His eyes were wide, his face still with though. It's difficult to describe the look, but I call it in Joey, "the mature look" An expression of knowing, or, perhaps of learning. And I saw that same look on Dov's face. No furrowed brow, just calm.
I went up to his room to say my own good bye to Dov. Upon seeing me at the door, he gave me that greatest of gifts, his biggest smile. I held him for a long time, kissed the top of his head and thanked him for the laughter, the great conversation and for braving the adventure. I was compelled to point out to Dov that the only voice that mattered to Blaire was the one that came from Joey's heart. And his hands flew up to his face as he covered his eyes with that wonderful smile of his.
When I returned to my room, Joey gave us a smile of the longest duration I had ever witnessed in his 19 years. Rachael and I were in awe. Joey typed, "I am a man in love." Then, "I am the happiest I have ever been. This was the greatest week of my life" And as for Dov, "He was happier than I've ever seen him tonight."
I will share his typings about his connection to Dov, by simple proximity and what we all, according to him, need to learn about how people with autism connect.
Throughout the evening, Joey repeated, "Where's Portia?" knowing full well your location. He clarified on his Lightwriter how he wished you could have been with us. I hope this description can at least give you a glimpse into our night. I attempted to catch the moments on film. I am sending a shot of Dov looking over at Joey and will make a disc of the video. How I wish I could give you the images in my mind's eye. I was like a platespinner in the circus, moving between devices, boards and cameras, all the while just a bit high on the energy of the moments that were unfolding in this strangely magical place.
We will need to come to LA soon, as Joey is eager to reunite with Blaire. I believe a reunion with Dov, Blaire and Joey is in order! Maybe Dov could keep in touch with Blaire as well! They live in Orange County. I will send her email address as soon as I unpack it.
The conference itself had it's great points and snags. It's an art form to learn to navigate the sessions and balance the schedule with the reality of autism. Joey Rachael and I did an evaluation which we will copy to you with much more detail about the courses themselves.
Much love to you, and please, if you would, share this with Dov. Let him know how much Joey, Rachael and I adore him. And give my best to Linda. What a gem!
I promise to post!