On Wednesday morning, September 11, my son William Aronow participated in the 911 Memorial ceremony at Ground Zero in New York City to remember his late father, Richard Aronow. He cannot make clear speech sounds. He used his iPad for voice communication to read names and make a tribute to his father. Yes, he nailed it.
—Copyright 2019, Laura Ann Weinberg. You may link to this page but may not put it behind a private paywall without prior permission. —
This post is to document the support and effort William put into it and that of many people who made it possible. People went out of their way to help him be prepared, confident, and comfortable. You could say they were making accommodations, but it was heartfelt and kind.
William had attended and watched the annual ceremony in New York City, seeing his aunt or his uncle participating in reading names, a few times. I told him years ago that I thought he could participate, too, and he was interested but didn’t have the confidence. When he graduated last year, he felt ready. I entered him in the lottery, which is how readers are selected from among family members and first responders who want to participate in the ceremony each year. He “won” on his first try.
When he found out that he was selected, he knew right away what he wanted to say. He told me on his device. “…and my father, Richard Aronow. Dad, I love you very much. I miss you.” Pairs of participants read assigned sets of 40 names responsively. We asked for his uncle, Gil Aronow, to be assigned to read with William on the same podium. The day that we got William’s set of names (CL’s and CO’s), I programmed the pronunciation into his device. (Thankfully, this year I finally figured out how to trick his device into the correct stress for his own family name: as “arrow-no”.) Gil was assigned the name “Colbert” as Coal-bert, while William had the person whose name is said as “Coal-bear.” Reading names accurately is stressful for anyone on that podium, as is delivering your speech without forgetting what to say. Those were things William would not have to stress about.
When you use a touchscreen to say items in a list, you can’t keep your place using your finger, like people normally would. Standing on a podium in front of a crowd and video cameras, it’s natural to look up. When William looks up, his hand moves a little. We practiced and refined his touch screens, and with each change to the screen and navigation, he became less anxious and more accurate. The screen was colored to help him find his place. To signify the point at which his uncle would say a name, there was a blank button. He wanted at first to have all the names added to the speech message, but then changed his mind and had just one name showing at a time.
Pacing in a ritual is important. So that he wouldn’t rush, I reminded him that the ceremony is not about him. We know people who listen every year for their loved ones’ names, and they want to hear them clearly. We practiced reading responsively for pacing, and then he practiced with different people standing in for his uncle.
We practiced many times and in different positions to work out all the ways in which things might go wrong. You can skip a name or row or say it twice or three times. You can completely lose your place. It helped him to remember that every year, an extra reader is designated to say all the names other readers forgot to say. He knew it was all right to make a mistake, and mistakes were expected. Each change on his device, after we discovered another type of error, reduced his anxiety. Offset boxes, certain row lengths, different button sizes, simple shading, coloring, and interlocking screens helped him navigate his device.
His uncle was told what to do in case William repeated or skipped a name. A speech therapist suggested adding visit and navigation buttons, just in case. I was prepared to intervene if things got beyond a certain level. Neither Gil nor I had to do anything for him. He was fine.
It was good that we happened to listen to a podcast about preparations for the original moonshots ( https://www.comedy.co.uk/radio/the_infinite_monkey_cage/episodes/2019/1/ ). For each NASA mission, a flight director put the astronauts through disaster scenarios so that they were fully prepared. William understood that I was his flight director. For practice under stress, he read his portion for speech therapist friends and their friends at a karaoke bar. He needed to be prepared when his emotions kicked in on 9/11. At the bar, he ordered fried calamari and our friend sang Evita, which he appreciated but which weren’t quite enough to make up for that awkward experience.
The staff who produce the Memorial event every year handled him very thoughtfully. He rehearsed with the stage director for hours the day before. In case one of the moments of silence occurred during his portion, we talked about what should happen. But staff had checked and assigned him a section of names unlikely to be interrupted. We practiced how to link his iPad to the sound system. I had buttons on his device to use in sound checks, and we worked how to do it all in real time. We would have to attach his device to a cable, check the sound level without changing anything he would see, get up the stairs with a cable attached, and set up the printer reading and his device on the same podium in short order. I brought a kickstand for his iPad, but it wasn’t quite high enough, and everything had to be set up quickly. His limb apraxia has meant holding the device for himself is confusing and uncomfortable (although I won’t stop trying and hope for a solution). So I would hold his iPad for him. Then he could literally and emotionally lean against me to steady himself.
We practiced entrances and exits. He knew exactly where he would stand and who would lead him on and off the raised stage, so that he didn’t rush. I told him stories of my wedding to his father to help him understand staging. Music plays during the entrance and exit of a wedding to slow people down. “And they don’t leave the wedding after the first person says, ‘I do!’” I reminded him.
With Jeffrey Pearl, stage director in his 18th
He started to get comfortable and asked for the restroom. The production restroom was behind the production room, with a dozen live video monitors of the Memorial plaza and locations. He stopped dead in his tracks. A week earlier he had told me he was anxious about being on “TV.” He asked for reassurance and had calmed down. Now he was reminded again and, after a few minutes of staring, said: “I’m uncomfortable.” We went out and talked with the stage director about how the things that aren’t perfect are what make something a live event. Otherwise, it’s a movie. The point of this Memorial is that people are actively remembering and doing everything in real time each year. Humans making some mistakes are how we know it’s from the heart. Human elements are why other people come or watch on television. If not, you could simply play last year’s video.
I’m feeling ready
His seat during the rehearsal was 5 feet from the stage, in the same spot where he would be sitting for the Memorial the next day. He had the row just for himself and his extended family, with a personal production assistant, just in case. We were so sheltered by the staff who surrounded us that we had no sense of any dignitaries being there, even though the Senate majority leader, a Presidential candidate, two governors, and others were there with their entourages.
The morning of 9/11, 2019, William was up and in the shower by 4:30 AM. His morning helper of 10 years, Tina, got us out the door. Our drive into NYC was quiet. Approaching the parking garage, we were behind a long truck, and he recognized what it was. It was for removing bombs. He hadn’t wanted to talk to the press, so we walked quickly past the press area. There was a security mix-up, so he waited a long time to get in the secure area to a restroom. Rather than join the crowd of readers inside the museum, where we heard there were speeches and pastries, he wanted to wait on the plaza. We had our breakfast sandwiches with bibs on, as I fretted over melted cheese landing on a shirt. We have traveled internationally in recent years, and we have managed some strange situations. He was calm; I’m the nervous one.
It was beautiful outside, with fluffy clouds and a light breeze. He focused on the sound of the massive memorial fountains not far away. He’s gotten used to bagpipes over the 18 years since a police bagpipe band at his dad’s funeral scared him, at age 4. The bagpipers practiced their routine. I helped him add “bagpipes” to the pages on his device for “9/11” and “music.” Family joined us. We talked about the kids’ plans, how different families handle rituals of remembrance, and who could go for lunch later. William’s turn was tenth; he watched others go through their lists of names and make tributes. He saw the flow. We listened to sweet flute music, names, choked up speeches, and the fountains. I got him up slightly ahead of time to plug in and check his sound. Then it was his turn. He, Gil, and I sidestepped risers used for two small children, who had just finished their readings, and walked quickly up the stairs.
wtcautism 