Sometimes lightning DOES strike twice. . . . Last year it seemed like a dream come true when Samantha was invited to speak on a film panel about empowering females with autism along with Rachel Israel, director of Keep the Change and Aubrie Therrien, Executive Director of EPIC Players. Samantha even received an official thank you note, which we framed and put on her desk.
Flash forward one year – I figured I had nothing to lose by reaching out to the same U.N. event organizer again. If he loved my daughter last year, maybe she would be asked to speak again? After much emailing back and forth, Samantha was invited to make a speech about her personal experience in the context of “Autism: Nurturing Care Framework and Family Centered Care.” The invitation came at the last minute, late Friday afternoon from Andy Shih at Autism Speaks. Would Samantha be willing to talk for 5 to 10 minutes about her experience with support services—or the lack of them—in New York? Could we please send a copy of her remarks to him on Monday morning? I panicked silently. Samantha had already departed for a full weekend of activities and wouldn’t be home till late Sunday night.
“How about Tuesday morning?” I countered, wondering how I could possibly help Samantha prepare even five minutes of remarks quickly enough for her to practice and deliver them the very next day. Also, I was asked to discuss possible questions for the Q and A in advance. So Samantha would be “comfortable.” As my daughter likes to say, the questions were not “easy peasy” (even for me!), but somehow we managed to make Andy’s deadline and gain his enthusiastic approval for the speech.
Samantha’s only request and concern was to be seated somewhere in the middle of the panel and not in an aisle seat. Crazy right? This quirky preference works out well for our family when we go in taxis or on airplanes. We are happy if she prefers the most uncomfortable seat in the middle. But I am NOT happy when she wants to rearrange the seating at a U.N. Panel with foreign dignitaries and autism experts. Fortunately, that wasn’t a deal breaker.
Speaking of deal breakers, I was a bit worried about the security procedures entering the U.N. as well as getting lost on our way to finding the right floor and room. Andy assured us that we would have an escort, which eased my mind somewhat. The first phase of the security check was just like the airport where you put your bag and coat in a plastic tray to be scanned. Samantha is an experienced traveler so we cruised through without hiccup.
Phase two was a totally different story—a nightmare in fact. The security agent asked me to go through the metal scanner first.
“Do you want me to take my jewelry off?” I indicated my watch, ring and silver necklace.
“No, just put your hands up high above the scanner.” The guard motioned me through easily.
But for Samantha it was a different story (and potentially the end of the story). The guard wanted Samantha to remove her watch.
“But I can’t take off my watch!” Samantha protested loudly. “My dad told me never to take off my watch because the last time I took off my watch it was stolen. I promised him never to take it off.”
The security guard insisted.
“How come my mom didn’t have to take off her watch? It’s not fair. It’s stupid. Mom, why is she being such a b—-?”
Before I could faint (and die of embarrassment), our escort explained about Samantha’s autism. Otherwise we would NOT have been able to enter the building. Security checks with their unpredictability are fraught with peril and triggers (like two summers ago when Samantha was told to eat or abandon her green apple or we could not get on the plane to Hawaii). Finally, she was allowed to pass through security without removing her watch.
Before I could breathe a sigh of relief, we had one more hurdle: guest IDs which required a quick photo. For some unfathomable reason, the security person insisted on taking a second picture of Samantha.
“How come I needed two pictures and you only had one?”
“Maybe they just wanted to capture your smile,” I teased.
Luckily the UN escort and organizers were extremely understanding and supportive. When Samantha noticed that she was on the program to speak at 5 pm instead of 4 pm (as we had been promised), Andy switched Samantha to an earlier slot so she could leave on time for her EPIC rehearsal. Andy was also kind enough to seat her in the middle of the panel, with me sitting behind her in case she had any other questions or needed support. But no support was needed. Once in the limelight, Samantha rose to the occasion. She smiled at the audience and spoke for a full 13 minutes, and showed everyone in the room that many people with autism can and do make eye contact.
Bravo, Samantha. All’s well that ends well. https://www.youtube.com/watch?v=spceQ6MM7dQ&feature=youtu.be
Marguerite Elisofon is a New York City writer and the author of My Picture Perfect Family, a memoir about how her family navigated life with a child on the autistic spectrum before the internet and support groups existed. She also blogs about parenting young adults and disability related issues in The Never Empty Nest. Her writing has been featured in a variety of publications, including Time and NY Metro Parents magazine, and her family’s story has been featured by the NY Post, Fox News, The Daily Mail, and on Jenny McCarthy’s Dirty Sexy Funny radio show. A Vassar graduate, Marguerite was born and raised in New York City, where she still lives with her husband, Howard, in their mostly-empty nest. She is available to speak about a wide variety of issues relating to twins, parenting, and autism. 