Two years ago, we started taking the bus with Kende, when he was in seventh grade. At times like this, I would come down the hill on my son’s scooter, because buses hardly run around here either, but most of the time I would hitch a ride with the first car that came along, because I didn’t want to break my leg in a scooter accident after turning fifty …

The kind, chatty drivers, blissfully unaware of the shock their answers would provoke, would ask, “Where are you off to?” And I would cheerfully announce the big news: I’m going to meet my autistic son outside his school, accompany him to the bus stop, and we’re going to take the bus home together. Then he’ll get the scooter, because he refuses to walk another half hour from the stop, and I’ll walk home afterwards. A little two-hour program. Sometimes my father helped out, too. Then, when Kende got better at it, I let him go with Kíra, who enthusiastically took on the role of the capable, independent, caring big sister. Eventually, walking worked, too, because you can’t ride a scooter in the winter cold.

This time last year, though, I was racking my brains over how this child would get to the little town an hour and a half away a year later. Where would I find someone who happened to be going that way, taking that particular bus in the morning and that particular one back in the afternoon, at exactly the right times, and who would be willing to escort my son every day—a boy who barely communicates with strangers, pulls his hood over his head, and tics loudly? Because once I’ve driven him to the bus in fifteen minutes, I have to turn around and take the others half an hour later, then go about my own business. I can’t spend four hours a day driving simply because there are so few schools for disabled children in Hungary, let alone secondary schools, and the nearest one is an hour away even by car! I don’t even need to mention how few child transport services there are, or how many people’s and families’ lives and work are thrown into turmoil by this tiny, everyday task of getting a child who cannot travel independently to school every day. To the school that isn’t an ordinary school. To the little secondary school that nurtures seedlings. The one that is available to those who don’t even reach the level of a vocational assistant.

No one believed in us. Not even those closest to us. “You won’t find anyone anyway, you’ll have to hire a driver!” several people told me. But then life had other plans. In eighth grade, Kende got a little girlfriend. A little girl who was all heart and soul, who had Williams syndrome, and who was at once a stout old woman (“Ooh! Boys mustn’t do that, it’s very dangerous!”) and a naive little girl who asked every five minutes on the motorway whether we were home yet. In her grown-up, hoarse voice, she navigates Kende with remarkable skill, sometimes almost ordering my son around, whose answer to everything until then had been “No!”. But if (for the sake of discretion, let’s call her) Petra asks, Kende jumps: “Yes, Petra, what would you like? Are you thirsty? Shall I bring you some water? Would you like something to eat?” Out of my withdrawn son, who answers everything with “Leave me alone already” and hides behind his hood even at home, emerged a gentleman, a gallant, protective, helpful young man. If Petra gets frightened that she might, for example, fall down the stairs, Kende immediately jumps up: “I’m here, Petra, I’ll hold you, I’ll look after you, don’t be afraid!” And I just stand there, amazed. Where did this child learn all this?

Petra doesn’t just ask for favours as a self-assured thirteen-year-old girl; she is raising Kende, too. What I couldn’t achieve in seventeen years, she managed in one stroke! “Kende, speak nicely to your mummy!”, “Kende, listen to your mummy nicely!” And Kende listens. In the evenings, I hear Petra’s firm voice through the speakerphone, but she comes to our house every week and sleeps over, too. Last year, Kende even asked me for a ring.
“Mom, I need a ring!”
“Yes, what kind of ring?” I pretended not to know.
“You know, a man buys it for a woman, you know, Mom!”
“You mean an engagement ring?”
“Yes, can you give me one?”
“Of course, son!” I said with great confidence, thinking this was just some kind of infatuation. But it wasn’t, because the next time Petra was at our house, Kende, who has nothing to do with the material world, whispered to me, “So, Mom, do you have a ring?” So I ran upstairs, grabbed a cheap costume-jewellery ring with an adjustable size, and put it in his hand. I turned around, turned back, and suddenly Petra came up to me and showed me her new ring: “Look, Dóri, I got this from Kende!” — “Re-eally? Th-this?” I asked, barely able to get the words out, so surprised was I. I called Kende and asked him how he could have given Petra the silver ring with a diamond that I had inherited from my grandmother. “The other one was small, this one’s prettier!” replied the gentleman who had transformed from my cocooned son into a butterfly. It took me a long time to convince them that the rings really did have to be exchanged back, but in the end I succeeded.

By the time he was eight months old, it was clear that something about him was not typical. For a long time, I feared he might be schizophrenic, because sometimes he was present, and at other times unreachable; sometimes he smiled enchantingly, other times he had uncontrollable fits of rage. At times he was affectionate and cuddly, at others he couldn’t tolerate anyone’s closeness. His emotional swings were so extreme that they turned our entire family life upside down. Until the age of five, he didn’t speak—he used only five words of his own invention, to which he clung rigidly. Whenever he learned a new word, he forgot another. On the advice of a speech therapist, for ten months, every evening for an hour—while he happily pushed his toy cars around—I repeated in the background: “ca-ca-car… ca-ca-car…” His little sibling also tried to get him to speak: “Say something already, little brother, caaaar!”—but to no avail. He does everything only and exactly the way he wants to. No one tells him what to

We took Petra to my parents’ place at Lake Balaton in the summer. When we arrived, Kende took Petra’s hand and walked around the vineyard with her. Sometimes he boldly embraces her, wrapping his arms around her from behind. My autistic son, who hurls a choice selection of swear words at me if I even try to approach him a little, if I touch him or attempt the slightest sign of physical affection.

When I first saw them holding hands, I was driving them to school. I looked back in the car, then quickly turned my head again and left my gaze there. At the last moment I yanked the steering wheel back; we were heading straight for a bush, which the youngsters thoroughly enjoyed! But woe betide Kende if he doesn’t behave himself! Petra then grabs the ring, yanks it off his thick fingers, and slams it proudly onto the table in front of Kende, then storms off with determined steps. The house practically rumbles in her wake! Together, they are like two innocent children in love and an old, well-matched, bickering couple all at once! They have infinite love, tenderness and acceptance for each other in a world where appearances and extra kilos, pimples and an awkward gait don’t matter! Where nobody looks at how confused or repetitive the other person’s requests are, because they are simply happy to have someone who accepts them and opens a new door for them in this narrow, judgmental, even contemptuous, incomprehending world.

In June, Kende graduated from primary school at seventeen. “Will they accept me, Mom?”, “What if they don’t accept me, Mom?”, “When will we get a letter, Mom?” Kende put his anxious record on repeat, and eventually the reassuring letter arrived: my son had been accepted into the only special education school that was still just within reach. Over the summer, I started practising the route with him by bus in 35-degree heat. At least once a week, we took the bus there and back, which took half a day. I learned a lot from it, too; I’ve been driving for decades. It was especially difficult to explain to an autistic child that the 400 bus sometimes takes you here and sometimes there, depending on when it officially departs, and it can even be late … Then I figured out that we should gradually let him go on his own, but first he needed to try without an adult. So I asked Petra to come along while I was still going, showed her the route from beginning to end, and eventually the two of them went there and back without me. After every successful journey, there was ice cream or a soft drink as a reward.

For now, I have become a timetable dispatcher, because Kende doesn’t understand the concept of time, and numbers are a problem, too. So it’s no use writing down that the bus leaves at 6:43, because at 6:31 he doesn’t know whether that is earlier or later. He calls me every minute to ask if he has missed the bus and what he should do now. And of course, from a distance, I have no way of knowing whether that particular bus has already gone or is simply late. So we wait for the buses together, while learning about time and numbers (“What number bus do you see? What’s written on it?”). When he’s had enough, he hangs up on me, and that’s when I know he’s becoming more and more confident!

Today, when I was telling someone how capable Kende has become and how happy I am about it, I suddenly remembered his first school opening ceremony, when he was eight. After finally, and with such difficulty, bringing myself to send him to a special education school, I sat there at the ceremony, dressed up nicely, on the gym benches among the disabled children of parents who were often disabled or disadvantaged themselves. One child was grinning, another staring blankly through soda-bottle glasses.

When the national anthem began, Tomika, a huge baby-like boy who weighed nearly  twohundred pounds and whose response to music was a kind of reflex, happily stood up and began to sing: “Happy biiiiirthday to you, happy biiiiirthday to you!” I cried and laughed at the same time, wondering where my little boy had ended up, and whether by choosing this school I had taken an opportunity away from him—or whether, in fact, he would grow wings?

Seventeen years. Not just any seventeen years. As if it had been thirty-four—or even more. As if the wheel of time had turned differently. As if it hadn’t all happened within a single lifetime. As if it hadn’t even happened to me.

Seventeen years ago, my son Kende was born on a beautiful, characteristically spring day just like this—sometimes sunny, sometimes cloudy—when the plants, bursting with life, already signal that nature has awakened and longs to live. Just after Easter. When the daffodils, hyacinths, and magnolias have already faded, and the lilacs are just beginning to bloom.
Every year on his birthday, I become emotional. Each time, I’m reminded of the many struggles of this life—our shared life—and the incomparable moments of happiness that came with them. The rewards I received from life for my often superhuman efforts: a very, very special little boy—pardon, a young man—and with him, a life path that is anything but ordinary.
And yet, my day started badly. I barely slept three hours, woke up irritable—not just because of this one night, but because this insidious insomnia has been resurfacing again and again for so long. My poor sleep began with Kende’s birth—or rather, during my pregnancy with him. Somehow, our nervous systems synchronized. From the time he was just a few months old, Kende woke up every night—sometimes as many as eight times. I tried everything, nothing worked. He would wake and cry relentlessly, several times each night, until he was three years old. When he was old enough to stand in his crib, he would rhythmically bang his head against the wall, as if mercilessly punishing himself for sins not yet committed. And I would rock him, sometimes helplessly sobbing, trying to soothe him; other times I would just watch in confusion as this innocent little soul refused to be tamed.
Even during pregnancy, he affected me. He lay in a way that pressed against my ribs, and I had to give up my hobby at the time—making glass jewelry—because the glass beads made me nauseous. Only much later, when he felt sick from the pure view of a necklace, did I connect this sensation with his aversion to such objects—an aversion that truly causes him immediate bouts of vomiting.
By the time he was eight months old, it was clear that something about him was not typical. For a long time, I feared he might be schizophrenic, because sometimes he was present, and at other times unreachable; sometimes he smiled enchantingly, other times he had uncontrollable fits of rage. At times he was affectionate and cuddly, at others he couldn’t tolerate anyone’s closeness. His emotional swings were so extreme that they turned our entire family life upside down. Until the age of five, he didn’t speak—he used only five words of his own invention, to which he clung rigidly. Whenever he learned a new word, he forgot another. On the advice of a speech therapist, for ten months, every evening for an hour—while he happily pushed his toy cars around—I repeated in the background: “ca-ca-car… ca-ca-car…” His little sibling also tried to get him to speak: “Say something already, little brother, caaaar!”—but to no avail. He does everything only and exactly the way he wants to. No one tells him what to

Seventeen years. Not just any seventeen years. As if it had been thirty-four—or even more. As if the wheel of time had turned differently. As if it hadn’t all happened within a single lifetime. As if it hadn’t even happened to me.

Seventeen years ago, my son Kende was born on a beautiful, characteristically spring day just like this—sometimes sunny, sometimes cloudy—when the plants, bursting with life, already signal that nature has awakened and longs to live. Just after Easter. When the daffodils, hyacinths, and magnolias have already faded, and the lilacs are just beginning to bloom.
Every year on his birthday, I become emotional. Each time, I’m reminded of the many struggles of this life—our shared life—and the incomparable moments of happiness that came with them. The rewards I received from life for my often superhuman efforts: a very, very special little boy—pardon, a young man—and with him, a life path that is anything but ordinary.
And yet, my day started badly. I barely slept three hours, woke up irritable—not just because of this one night, but because this insidious insomnia has been resurfacing again and again for so long. My poor sleep began with Kende’s birth—or rather, during my pregnancy with him. Somehow, our nervous systems synchronized. From the time he was just a few months old, Kende woke up every night—sometimes as many as eight times. I tried everything, nothing worked. He would wake and cry relentlessly, several times each night, until he was three years old. When he was old enough to stand in his crib, he would rhythmically bang his head against the wall, as if mercilessly punishing himself for sins not yet committed. And I would rock him, sometimes helplessly sobbing, trying to soothe him; other times I would just watch in confusion as this innocent little soul refused to be tamed.
Even during pregnancy, he affected me. He lay in a way that pressed against my ribs, and I had to give up my hobby at the time—making glass jewelry—because the glass beads made me nauseous. Only much later, when he felt sick from the pure view of a necklace, did I connect this sensation with his aversion to such objects—an aversion that truly causes him immediate bouts of vomiting.
By the time he was eight months old, it was clear that something about him was not typical. For a long time, I feared he might be schizophrenic, because sometimes he was present, and at other times unreachable; sometimes he smiled enchantingly, other times he had uncontrollable fits of rage. At times he was affectionate and cuddly, at others he couldn’t tolerate anyone’s closeness. His emotional swings were so extreme that they turned our entire family life upside down. Until the age of five, he didn’t speak—he used only five words of his own invention, to which he clung rigidly. Whenever he learned a new word, he forgot another. On the advice of a speech therapist, for ten months, every evening for an hour—while he happily pushed his toy cars around—I repeated in the background: “ca-ca-car… ca-ca-car…” His little sibling also tried to get him to speak: “Say something already, little brother, caaaar!”—but to no avail. He does everything only and exactly the way he wants to. No one tells him what to

He was only admitted to a special education kindergarten because, when they rejected him, I caused a scene—if he wasn’t accepted there, then where could we possibly go? When I received his three-page evaluation, I read it with a steady face until I reached this sentence: “his performance is not outstanding in any area.” That’s when I broke down crying. Because it’s okay if you’re different, it’s okay if math or writing won’t come easily, or if you never learn to read—but nothing at all? What will become of a child like that? What kind of life will he have? Where will he find joy? How will he ever be happy?

Thank you, my little boy, my grown son, for these extraordinary years and this extraordinary life I get to live because of you. I am deeply grateful for every minute of these seventeen years—even if at moments they were very hard. Thank you for all the lessons about myself and others, about acceptance and love, that I have received from you. May God bless you with a long life, my little capricorn with the budding beard and mustache!

After giving my child a proper talking-to the other day, he has finally understood that Mom isn’t always available. It was about time—he’s sixteen! So yesterday I told him: I’ll be at the doctor’s, please don’t keep calling me like you usually do. Only call if something’s wrong, okay?
He only called twelve times.

Unfortunately, he calls other people too—and if he can’t reach them, he tries even harder. I keep repeating that this is not how it’s done: if you can’t reach someone, you wait for them to call back, and after 7 p.m. you don’t call anyone except family—at most your very best friend. But since that very best friend specifically asked not to be called late because their family goes to bed early, and my dear son keeps ringing anyway, the friend often ends up blocking Kende. Then Kende comes to me to complain—again, for the two-hundred-and-twenty-sixth time. Every single time, I patiently explain: your friend blocked you because you kept calling even though he asked you not to… do you understand?
It’s the same with texting. If you don’t pick up the phone, he writes. If you don’t reply, he writes even more…

But luckily, the other day he finally understood that Mom isn’t always available. Since then, before addressing me, he now tacks onto the beginning of whatever he wants to say—like an indispensable accessory—a monotone, declarative, even commanding, rapid-fire phrase: “Are you free!” And then he launches into his monologue.

Autistic children have to be taught everything separately that others learn by imitation — often with a lot of patient repetition. Very patient, with much repetition. Repetition. That is, repetition.

For years I’ve been telling Kende to put his clothes in the laundry basket in the evening. In vain — he leaves them on the floor. For years I’ve been telling him to take his plate away after eating — he leaves it on the table. For years I’ve been asking him not to pee on the toilet seat — yet he still pees on it. When that happens, I send him back, he protests, I insist, he gets upset and resists, I pretend to be very angry (though sometimes I don’t have to pretend much), then I threaten to take away his phone or mowing time, and then he finally does what I asked, grumbling. But usually, various swear words start flying around, which I generously put down to his Tourette’s syndrome, so we don’t have to argue about the same things all the time.
Lately, Kende often asks how long he still has to go to this school. I always tell him, “just this year, then you graduate.” He says, “I’d already go from here.” I understand him. He has been going there for nine years now and learns more or less the same things; he still counts within 10 or 20 and reads and writes on a first-grade level. He often says: “Tomorrow I’ll go on sick leave.” He hears this from his sister, who goes to a vocational school and already works every other week. There, you can’t just stay home for no reason — only if you’re on sick leave.

Lately, my son has been sick a lot. Even last school year he was almost always at home, and I was already afraid he’d have to repeat the year. And now this year, already in the second week, he got sick again, and last week too he was at home. At times like that, he blasts folk music in the living room and songs like Bogyó és Babóca for preschoolers, about two hundred and forty times a day. Speaking of repetition. And he wants pancakes. Every day. And every five minutes he asks the same questions. You can probably guess what my days are like. I cook him something healthy then, which of course he won’t eat, because it’s disgusting. Needless to say, I would also be glad if he were at school more. But no matter how much I tell him that he has to go to school, and that if he doesn’t, he’ll have to repeat the year, he just keeps repeating, a hundred and fifty times a day, that he doesn’t care, that I should leave him alone, and that he’s very sick.
Lately, though, he usually says all this rather kindly, which makes me melt completely, since I’m used to his wild swearing and banging. He’s sixteen, strong — I can’t drag him by force even into the next room, let alone to school.

But then I had an idea, when he kept complaining about how bored he was.

So that’s how our entertaining sick leave sadly came to an end, and the repetition of gray weekdays began again. I think I am the one who is a little bored now.