To Be Seen and Heard and Heard Again

by Nina Mogilnik

The author and her son

On a recent trip to Israel with my husband and our autistic son, I was brought back to a time, seventeen years ago, when I went on a trip with my older sister and my parents, also to Israel.  That trip was a very bittersweet one, as we'd only learned a month or so before that my father's lung cancer had spread, and that he had at most six months to live.

Not being the practical sister, my response to that news was, "Let's take daddy to Israel."  Which we did. And I came prepared, because in addition to having lung cancer, my father suffered from dementia. So when he announced mid-flight that he wanted to go home, I pushed up the window shade and said, "See the clouds Daddy? We're on a plane, over the Atlantic, on our way to Israel." 

“OK, I want to go home," was the reply. So I whipped out my notepad and wrote again that we were on our way to Israel, to see family and friends. That seemed to calm my dad, and all was well for the rest of the flight. Airport arrival was fine, as was the trip to our hotel. When we entered the lobby from the parking garage, my father started yelling, "Police! Police! Someone call the police!" Damn it, I thought we got through the hard part on the plane. Turns out that was the least turbulent part of the trip.

Fast forward to May 2023. After nearly two decades of refusing ever to go back to Israel, my son Noah finally agreed to return.  We were invited to a family wedding, and I dared not hope, after so much refusal for so long, that he would change his mind. But just like that, he did. He even invited my cousin Genia to go with us to Beit Guvrin, a place he remembered happily from the only other time he'd been to Israel, about six months after my father, z'l, passed away.

Noah's a great flyer, so even last minute changes which necessitated a layover in Paris on the way there didn't phase him.  He wore his backpack and pulled his carry-on behind him as we went back and forth and back again in search of the gate for our connecting flight to Tel Aviv. It kept changing. Do the French hate Jews? Or just all people traveling to Israel? Were they trying extra hard to keep us safe? Or just enjoying aggravating us? 

After using the entirety of our two and a half hour layover to find our departure gate--and going through security twice  looking for it--we arrived at the right place and boarded.

Under five hours later, we landed in Tel Aviv. And that's when the wheels came off the plane, so to speak. As I was exiting the plane, I realized that Noah didn't have his jacket. My husband went back to check by our seats. No jacket. Cue a full on meltdown outside the plane, off to the side, just beyond the airplane doors. Out of my own frustration and exhaustion, I did something I try my level best never to do:  I threw my own tantrum, insisting that I was not going to go into Israel with Noah if he kept on talking about his jacket. I was going to get back on that plane and go home. I even threw my phone. I skipped right past sympathetic on my emotional monitoring chart, and headed straight for redheaded rage. Not even remotely helpful. But I wasn't really thinking as I screamed in my head, WHY DOES THE UNIVERSE HATE US???  WHY???

At some point, I calmed down enough to tell Noah that I would contact the Paris airport and ask them to look for his jacket. Then he insisted I do it right away. So I pretended to, and told him that they would call back if they found it. Then there was the discussion about having them mail the jacket to Israel. "No, they'll send it to New York, because we will have left Israel by the time they find it."

Somehow, Noah calmed down enough for us to continue into the airport--after all the other passengers on our flight were long gone, of course. On our way down the hall, I saw the man with the golf cart who'd witnessed Noah's breakdown and mine when he was assisting passengers from our flight.  I walked over to apologize. 

"I'm so sorry about what happened back there. My son's autistic, and was upset about his jacket, which apparently got left behind when we connected in Paris." Not missing a beat, I got back, "Would he like a ride? Wait here." While we waited, a woman standing nearby, holding a sign for an arriving Italian passenger, told me in her very broken English that her sixty-year-old brother is just like my son. She and her brother are originally from Argentina and in Hebrew that I managed to glean the meaning from, she told me how good his life in Israel is.  That was so lovely to hear. Especially in that moment.

Yossi came back and loaded us and our bags onto his golf cart, took our passports, got us the tickets we needed from the biometric passport counter, zipped us through the terminal, said something to another guy at a manned gate, and out we went, no bag checks, no interactions with anyone other than Yossi. "Give him some money," I had whispered to my husband during our ride. "He won't take it." "I don't care.  Give it to him anyway." After asking for some taxi advice, my husband smoothly palmed him twenty bucks, and we left the terminal, en route to our hotel in Tel Aviv.

When we arrived, I was still wound up from our airport experience, and I must have speed-talked something about it to Becca at the front desk. "My brother's autistic. He lives with my parents in New Jersey.  I get it." At breakfast the next day, Noah would eat none of the amazing foods laid out. The kitchen staff couldn't trip over themselves enough trying to find him options. Out of seemingly nowhere came a chocolate chip muffin (which I had to pick all the chips out of), a banana, a glass of milk, and a mug of hot chocolate.

I actually think someone went out each day to get Noah a muffin, because there was nothing else like it at the extensive buffet. Asa even came out from the kitchen one morning during our week-long stay to tell me that he tried to find Noah plain Cheerios at the market, but couldn't find any. "I know. I tried too," I told him.

I also discovered that in addition to Becca, the hotel manager has a ten-year-old daughter who is autistic. We had a long chat about that, he and I, and about our family's experiences in America, as well as about our planned visit to Kishorit, a kibbutz for disabled adults we'd visited back in 2018, without Noah.

I live in America with my heart in my mouth, knowing how little we as a country care for the most vulnerable among us. In a matter of hours in Israel, I was offered more understanding and compassion than in the decades I've spent raising Noah with my husband in New York. That is not hyperbole. That is my lived reality. Are there moments of grace offered to us, to Noah, in New York? Yes, of course. But if I were tabulating them, I think they'd look meager in comparison with the dirty looks, the parents walking down a shared sidewalk and pulling their children away from my son--as if they might catch something from him--not to mention the other slights and worse we've experienced, including within and from the Jewish community, which proudly trumpets its efforts to help migrants, the homeless, poor kids in need of school supplies, and to advocate for voting rights, abortion rights, and so on. But can't seem to figure out how to embrace--literally or figuratively--a Jew with autism.  Not to mention his family.

Gratitude is a deeply inadequate word to describe how I felt in those first hours in Israel, and in the week that unfolded from there. Tragically inadequate, in fact. To be seen. To be heard. To be seen when screaming. To be listened to when shouting. To be offered a helping hand, an open heart, words of compassion. These are the gifts I have dreamed of, the things I have been desperate for as a parent. Not every moment of every day.  But very often, and absolutely in my worst moments. And Noah's.  

I was able to coach my father, z'l, through a physically, emotionally, and spiritually draining last journey to Israel. I like to believe that what I learned from parenting Noah allowed me to help my father. It broke down for me at Ben Gurion, all these years later, but through the kindness of strangers, and perhaps channeling some deeply embedded gifts of living and loving from my father to me, I was able again to rise to meet the ever present challenge of being the mom I am to the child I have.  

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Nina Mogilnik worked for decades in non-profit, government and philanthropy settings, doing work she believed did some good and no harm.  She moved with her family from the suburbs to NYC after her autistic son graduated from high school at age 21.  She continued to do some work remotely, but then realized that her real job needed to be (re) constructing a life for her son in his new home and city.  She continues to write--as a blogger for The Times of Israel, for Medium, and occasionally for other publications.  This is how she records/accounts for/shouts about/expresses and otherwise communicates the challenges and joys of living a complicated, sometimes heartbreaking, but always true, life.