Thursday, June 26, 2008

An Inadequate Summary of the Hub at USD Part 1

What follows is a completely inadequate summary of the occasion of The Autism Hub presentation at University of San Diego's Autism Institute on June 25, 2008. The reason it will be inadequate, the reason that I know this even before committing it to paper, is that it would be impossible to capture the spirit and energy of that day in a simple blog entry.

It began with a toast.
Bev, Camille, Dad of Cameron, Estee, and I all met in Old Town San Diego at a landmark San Diego restaurant - the Old Town Mexican Cafe. Its the kind of place with wire-back chairs in a stuffy room and slow service, but that still has a 45-minute wait on a Tuesday evening. And has for decades.
When we sat down for a joy-filled dinner, it was the first time several of us had met in person, despite e-knowing each other for a couple of years or more. Though the next morning we were to present to a crowd of 200 and we were just getting a feel for each other, we just flat-out had a great time. If you think you might have come up during our dinner conversation, you probably did. When Do'C asked the Mariachis to play Jalisco, we knew it was time to call it a night. But not before we toasted the fact that we had all come together, spanning three states and two countries, to talk about what we do.

Next thing we all knew - the next morning - we were hustling around in a media room in the Joan B. Kroc Institute for Peace and Justice (certainly an apropos location for the subject matter), transferring files from laptop to laptop, testing software versions and compatibility, running through various ways to reshuffle and reorder the presentation due to aesthetical, timeframe, and technological issues. If one was not careful, one might by impaled by a flying memory stick in that busy room. After a very quick 90 minutes, Dr. Jodi Robledo came in and said we had access to the auditorium in 5 minutes. But we were only 20 minutes into our first run-through!

As we set up on stage in the main auditorium ( a beautiful room in a world-class facility), I noticed that Peyton Goddard came in the room with her parents. Peyton's friend, Lisha, had already been there filming, and I was hoping this meant Peyton would be attending. She came over to the relatively empty side of the auditorium where my Mom (who came to see our presentation) was sitting and joined her for a while. In the meantime, the couple of hundred guests filed in and took their seats. The audience was predominantly educators and service providers, there were a number of parents, there were three self-advocates who had come down from Orange County, Stephen Hinkle also joined us later, and I believe two other autistics were in attendance.

The presentation, as we were told later, came together perfectly. Though we each individually had chosen our won subject matter, what resulted was a symphony of perspectives, assertions, and concepts that hit on seemingly every cylinder. From Estee's video, "Adam Speaks" to Bev's talk and video on the importance of respectful language, from Do'C's cheerleading (literally) and logical presentation about the "epidemic" to Camille's deeply insightful discussion of bias and stereotyping (bias: don't think you have it? Guess again...), from lots of laughs to some very touching moments (a moment of silence for Katie McCarron), we hopefully brought the attendees through as many aspects of the Autism Hub as can be accomplished in 2 hours.

In one of the more touching moments I experienced (there were many more that I am not fitting into this post), Peyton sat with her parents in the front row of the otherwise-empty auditorium near the end of the lunch break. Her Mother told us that she was typing something for us that she wanted us to have. After quite a few minutes, her mother had transcribed the brief note Peyton had worked so hard to write. The words were powerful, poignant. I will share them if I receive permission from Peyton to do so, as I forgot to ask her that day. They left the indelible impression that at least one person had heard our message loud and clear. Strange how this same person is one who I, in my own ignorance, may have "written off" just a few short years ago.

Perhaps in another post, I'd like to describe that afternoon's breakout session, as well as the fascinating panel discussion at the end of the day (please let me know if you are interested in hearing about it).

But in case it takes me some time to get that written, I want to make sure I express my gratitude to Dr. Anne Donnellan for making this whole thing possible. I am probably the 17,000th person Anne has directly impacted in a positive way, and am happy to be in that group. I want to thank Dr. Jodi Robledo for doing the heavy lifting of organizing the conference, despite her pregnancy (congratulations!) and for being the only person to subject herself to more interviews than I did. I want to thank Martha and Kate and Nan for their unabashed support for us "rookie" participants, and I want to thank Stephen, Peyton, Steven, Sara, Lauren, Bev, Camille, and a young woman in the crowd whose name I don't know for adding the "autism" to the "autism conference". I want to thank Diana Pastore Carson for the most heartfelt response to our presentation and for describing the very difficult conditions her brother has endured in the absence of true acceptance from the people who were assigned the professional responsibility to aid in caring for him. And Darlene and J.D., whose breakout I unfortunately missed due to our own occurring simultaneously. If I am forgetting anyone, please remind me and forgive me.

And I want to thank my wife, who valiantly chased, fed, cleaned, cajoled, entertained, moderated between, picked up after, and kept on schedule 3 active boys while their Dad was off sitting on a stage somewhere. I hope I'm improving J's future, I know she is improving J's now.


Camille said...

Thanks for the nice synopsis of our presentations. It was a lot of fun (if a little nerve wracking to contemplate).

I'm going to write a blog entry covering my material on bias, stigma and stereotyping for LeftBrain/RightBrain soon. I'm still recovering from the trip down to SD and back. Maybe tomorrow.

Thank you for organizing our contribution to the conference.

Do'C said...

"When Do'C asked the Mariachis to play Jalisco, we knew it was time to call it a night."

Listen here

I'm not so sure, I think of it as "getting started" music".
The schedule made it prudent to call it a night.

Anyway, I can't thank you enough for pulling this together for us. It was great to spend some time with all of you.

Hat's off to Drs. Donnelan and Robledo, all the USD staff, and the audience too.

Sharon said...

Thanks Steve and all the rest of you for doing this.

Just, thanks.

I'm very moved by what you have written. It gives me hope.

Club 166 said...

Thanks for the synopsis. It sounds like a great time, and more importantly, a great exposure to others of different points of view.

...Perhaps in another post, I'd like to describe that afternoon's breakout session, as well as the fascinating panel discussion at the end of the day (please let me know if you are interested in hearing about it).

OK, nice teaser, Steve. Now sit down and start writing about these sessions!


Niksmom said...

Steve, it sounds like the conference was highly successful. I'm glad you also enjoyed yourself. Can't wait to read that post about the breakout sessions and panel!

Daisy said...

I can't wait to read more. Thanks for the summaries!

Evonne said...

Hooray! I am so . . . hooray! :D

kristina said...

almost as good as being there---almost! great things afoot.

Anonymous said...

Thanks for the summary Steve. It was wonderful to have the Autism Hub as a part of the USD Autism Institute. Personally, I was enriched by meeting you all, hearing about your experiences and sharing time with you. Thanks so much to all the Hub participants.
Martha Leary

Mel said...

I am glad the presenters felt the power of the conference as much as we, the attendees, did. I missed your breakout session, so I would very much like to hear about it. Thank you all for helping me learn the best ways to support my beautiful son, Liam.

Steve D said...

Wow - Lots of nice comments!
@Camille - I look forward to your blog entry, as I found your presentation material to be fascinating.
@Do'C - Thanks for the link. What a pleasure the whole experience was.
@Sharon - You are very welcome, and we did mention your blogging award in Ireland. The attendees were duly impressed, especially in light of the fact that it was not in the "disability" category. Recognition such as that puts our message squarely in the mainstream.
@Joe and Daisy - It looks like I'll be writing that next post, then :)
@Evonne - Me too!
@ Kristina - Between you and Ari on GMA, Camille and Kathleen in NYMagazine, and the Hub at USD, I agree that good things are afoot!
@ Martha - I simply can't say enough good things about the whole group - you, Anne, Kate, Nan, Diana, Jodi, the Goddard family - everyone.
@ Mel - This is the most meaningful comment here, because it lets me know that we were able to make an impression on you. Thanks very much for your nice comment, and for attending!

Bev said...

One of my favorite parts of the conference was that I got to talk to Steve's mom and tell her how much he means to me. It was completely spontaneous and was one of several times I had to cry a little. But not in a bad way. Working with Steve, DoC, Camille and Estee on this was an overwhelmingly joyful experience.

Sara G said...

Thanks so much for including us - this was a very powerful conference, and has me excited to spread the message.