The Fear that Lives in my Heart

Asaf and Dill exercising in his running group

When Asaf was a young child, he was a bolter. If he had the slightest opportunity, an open door, a distracted moment, he would disappear within seconds. He loved climbing and had absolutely no sense of danger. His favorite escape destination was always the playground.

I would often find him standing on the pointed roof of the slide, one leg on each side, carefully balancing himself.

But it was never calm. Each tiny wobble sent a jolt of terror through me. I had to keep my voice steady while coaxing him down, even though inside I was shaking. Getting him down from there was a nightmare. In his eyes, anything he could climb was a personal challenge. The day he tried to climb an electricity pylon was the moment we realized we had no choice but to medicate him; just to numb that urge before he seriously hurt himself.

We are fortunate to live on a kibbutz, a closed community where everyone knew Asaf. If he was ever seen alone, people would quickly alert us. But those few minutes in between, before someone found him, were always terrifying.

One Friday night we were eating with friends when Asaf disappeared. We searched all his usual spots and found nothing. Picture the scene: two desperate parents cycling around the kibbutz in the dark, stopping anyone we saw desperate to find somone who had seen him. But no one had seen him. Eventually someone mentioned seeing a friend walking with Asaf toward our house. I raced home and found a happy little boy sitting comfortably, completely unaware of the anguish he had caused. He’d been found by the kibbutz member guarding the gate when he arrived there.

Not long afterwards, we drove down to Eilat to spend a few days with my parents, who had flown in from England. I was terrified he would bolt in the middle of the night, so I pushed the suitcase against the door. You could lock the room, but a simple downward motion of the handle opened it again.

At 7 a.m., the sound of a door opening woke me. I heard two girls chatting in the corridor. I looked around the room, and Asaf’s bed was empty. My heart hit the floor. I jolted his father awake. We grabbed our clothes and ran in opposite directions, half-dressed, searching desperately. I called reception, begging for help, explaining that my son was non-verbal, autistic, and had no sense of danger.

We spent ten long minutes running along every corridor, checking the pool area, and every corner of the hotel. He was nowhere to be found. My thoughts raced at impossible speed. Maybe he had gotten stuck in a room with no way out. Maybe someone found him, but he couldn’t answer who he was. How would I ever find him again?

I hovered between hysteria and the faint hope that this nightmare would end. After what felt like an eternity he was found. The hotel footman stopped Asaf as he tried to step onto a bus in front of the hotel. He approached him carefully, asked a question, and when Asaf didn’t respond, sat him down and called reception for help.

The relief of finding him was beyond anything I can describe. The fear of not knowing where he was, combined with the terror that I might never find him, was completely overwhelming.

Parents of non-verbal autistic children will nod as they read this. They understand exactly how I felt. Raising a child like Asaf was a series of immense, sometimes overwhelming, challenges. Life often turned into daily survival mode. You finish the day exhausted, breathing a heavy sigh of relief that you made it through, only to feel that sinking pit in your stomach knowing tomorrow would be more of the same. My partner once asked me what my dreams had been twenty years ago. I laughed. There were no dreams, not for me, not for Asaf. There was only survival.

As Asaf grew older, those intense urges to bolt gradually eased. Today he is happiest walking at his own pace, soaking in nature, and the world around him.

Yesterday, those old fears returned with full force.

Asaf and his wonderful carer, Dill, left early in the morning for Merchavim, which had moved to a new location. The address was in the GPS, and I trusted they would arrive safely. They left at 7am for a drive that should have taken an hour and fifteen minutes. At 9:15, I received a phone call asking where Asaf was, as he had not yet arrived. My fears exploded all at once as I tried to stay calm. My boss, who speaks Russian, called Dill and discovered they were lost and would reach their destination half an hour later.

Dill speaks no Hebrew and no English. He was alone with Asaf, who is non-verbal. Old memories and fears from Asaf’s childhood came crashing back. I held myself together for two hours, until all the emotion exploded like a volcano. I was sobbing, shaking, struggling to breathe and unable to calm myself. I had no GPS tracker on Asaf, no way of locating them until Dill finally sent me a pin. They were nowhere near where they actually were.

To cut a very long (and traumatic) story short, they arrived nearly five hours after leaving home, having driven over 300 kilometers instead of 67.

I told Asaf, once he was finally home, that I had cried from the fear that he might never return to me. He lifted his eyes to mine, and I watched them fill with tears. Then he reached for my arm and held it in a steady, unbroken grip, his hand refusing to let go. In that quiet moment, he spoke without words. His touch carried everything he could not say; and I felt his love and reassurance wrap around me. I also understood that the whole experience had been far more traumatic for me than for him.

Later he wrote that I should have compassion for myself.

Asaf and Dills Adventurous Journey

Dill, in his own way, stepped straight into Asaf’s world. He had no way of expressing that he was lost. He could not read the signs. He could not ask for help. He kept moving with the best intentions, doing everything he could, yet unable to correct the course. Watching the map later, I realized that Dill had become a mirror of Asaf’s experience. Two capable people, both with full inner worlds, wanting to do the right thing, but blocked at every turn by circumstances they could not control.

Dill unknowingly gave me a gift. By getting lost, he allowed me a glimpse into the effort behind every small action Asaf takes. His confusion and silence reflected Asaf’s lifelong struggle to navigate a world that does not always hear him. The map serves as a metaphor for the challenges Asaf faces every day. What should have been a simple 67 km drive to reach their destination became a 300 km journey across the country—long, winding, and sometimes impossible. Basic tasks that Asaf wants to undertake often require many attempts, and are frequently abandoned because his apraxia prevents the message from reaching his body correctly. In that moment, I understood my son a little more deeply, and loved him even more fiercely for the courage it takes him to navigate each day

As for me, this entire experience has reminded me just how vulnerable Asaf is in this world, No matter how much he grows, or how much I learn. Even after twenty-five years of raising him, even after everything we have lived through and everything he has taught me, that fear never truly disappears. It is the fear that shaped me as a mother, the fear that has followed me all these years, and the fear that only love can hold.

And in that love, I managed to regain my calm.

Sunrise over Nachal Hakibutzim this week.