The smell of our son’s favorite pastries — croissant, brioche, waffles — lingers in the air, as he hums softly and rhythmically, like an engine warming gently in his chest.
My wife and I were filling out the paperwork for our wills when we stopped abruptly. The uncertainty hit us all at once. That’s the impossible equation: We want our son to live a long, full life — longer than ours. We just can’t bear the thought of the world he might outlive us into.
The finality of death is unsettling for any parent, specifically the unknown that follows for their children. What elevates the fear for parents of disabled children is the known. We see how wider society fails our children with us in their corner. The way we’re forced to fight and scrap for every morsel of the overstretched systems we’re expected to rely upon. Most parents may ask, “What will become of my children when I’m gone?” We’re left asking, “How can we fix the system before we’re gone?”
We are constantly thinking about the precise shape of our son’s life, and what it takes to hold it with dignity, while simultaneously grappling with the fear that what we understand about him — deeply, wordlessly — might evaporate in our absence. That no folder, no care plan, no legal structure will preserve the knowledge of how to truly see him.
Our son is profoundly autistic and only able to speak a few words, but he listens with a kind of alert stillness that most people miss. He loves cars, the sound of ferry horns, and the texture of crunchy carrots. He’ll hold a twig for hours, feeling the grain of it, flicking it between his fingers. He hums when he’s calm, stims when he’s excited, and when he’s overwhelmed, he’ll bang his right hand so hard against the floor that his knuckles have built permanent calluses.
We understand what most wouldn’t notice. That “hello” often means yes. That “bye” means no. That a particular pitch of humming means overstimulation is on the way. That “stay here” doesn’t mean staying right in his spot; it means he’d like some quiet time, order, and familiar rhythm. That “big ship” isn’t just a phrase; it’s a request, a longing, and a source of joy. We’ve learned his language, and we’re still learning it. That’s what love looks like for us: not just care, but translation.
The haunting truth is we don’t trust the world to learn it after we’re gone.
How do you codify the exact tone of his humming that means “yes, but cautiously”? How do you explain that he needs to be handed two brioches from the pack, not because he’s difficult, but because that’s how his sense of safety is patterned?
Paperwork from public services involved in his care asks about mobility, feeding and medication. But they don’t ask about ferry horns, or the twig that calms him, or the specific tone of voice that doesn’t startle. Even when we try to explain, there’s a distance, a flattening. There’s a sense that what we’re saying is “nice to know,” not vital. But it is vital. Because these aren’t quirks, they’re how he makes sense of the world.
We’ve been lucky to have met some outstanding professionals, but even the best support workers move on. The brilliant nanny who figures out his cues might leave next month. His excellent teacher may be assigned a different class next year. His file will remain, thick with reports, no doubt. But none of those will say, when the humming gets high-pitched, offer him some quiet time in his room with the blinds drawn.
Institutions simply aren’t designed to inherit what love remembers.
Even culturally, the gap is wide. Autism is so often misunderstood; romanticized when it’s convenient, shied away from when it’s not. The “genius savant” trope is easier to digest than a child who doesn’t sleep, self-harms, doesn’t speak and melts down when the world spins too fast. People admire inclusion in theory, but when it comes to complexity — especially when it’s silent — they tend to back away. Or worse, they pretend the safety net exists when it doesn’t.
I’ll never forget the time my son was in deep distress and said the word “swimming.” It’s one of his few words, and I sprang into action because I knew exactly what he meant: he needed to go to the pool — needed the sensory regulation, the weightlessness, the calm.
We rushed over and arrived 20 minutes before the policy allowed children under 16 into the water. I explained the situation to the manager while trying to soothe my son, who was inconsolably melting down beside me, overwhelmed, sobbing, trying to self-regulate the only way he knew how.
The manager looked at me with a rehearsed smile and said, “Sorry, no can do. I know how it is; I’ve got kids of my own.”
I couldn’t stop myself from asking if any of her children were autistic.
She fell silent, but it didn’t change her mind. She stuck to the policy, and we were forced to wait. I want to say that those 20 minutes of despair and helplessness were a one-off, an anomaly, but unfortunately, they are a regular feature of our lives.
I have no doubt the manager went home that night feeling she had upheld the rules, confident in the fairness of the system. But rules that ignore nuance and lack flexibility aren’t neutral, they’re cruel. And children like mine live at the sharp edge of that cruelty.
We learned, once again, that even when we explain — calmly or desperately — systems rarely bend. Compassion, if it arrives at all, comes too late. And so, piece by piece, we stopped expecting flexibility from the outside and built our own instead.
We’ve designed our home around our son. There are corners of calm that hold his special objects. The garden is enclosed to ensure he can’t wander off. When we hear his high-pitched hum, we dim the lights. When his “silver string” is missing, we reach for one of our pre-made stashes of tinsel, expertly cut to the length that soothes him when he stims. When he says “jumping,” we cancel any plans and take him to the local trampoline park.
We’ve learned to sense when he needs pressure and when he needs space. Our rituals are emotional choreography as much as they are routine. Every day, we wake up and choose to keep learning his rhythm by attuning and adapting — love by affection and fluency.
And yet, for all that preparation, the fear remains because some parts of love don’t scale.
He’ll still love the mournful sound of deep ship horns when we’re gone, but will anyone know what that means to him? Not just boats, but comfort, fascination and safety. The long, low sound that calms his nervous system and lets him feel OK in the world for a bit longer.
We’re trying to leave him a life. We’ve written wills, spoken with our wonderfully supportive but distant diasporic family (countries and continents away) and filled out countless forms, but some things can’t be handed over. The smell of pastries in the morning meaning “safe.” The hug that reassures without overwhelming. The low, ship-horn sound that makes him close his eyes and hum gently like he’s found solid ground. These aren’t extras. They’re the architecture of his well-being.
We’re not asking to live forever; we just don’t want to leave before the world learns how to really see him.
Amro Alkado is a British Iraqi writer who grew up in Baghdad before moving to the United Kingdom as a child. His work explores memory, war, scarcity, migration and life with his neurodivergent son. He lives in Scotland with his wife and their son. His writing has appeared in Sky Island Journal and he also shares essays on Medium.
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