The birth of a child is one of those life-changing moments, not only because it usually marks the end of a carefree party lifestyle and raises our level of responsibility, but also because it changes us internally, albeit slowly and less noticeably.

Until our offspring are conceived, we are our own main project and most of the things we do stem from our own needs, desires and plans. Even our altruism and good deeds are often driven by the need to satisfy ourselves, and there’s nothing unusual or wrong about that.

With the birth of a child, a sizeable chunk of that energy and attention is diverted towards our offspring. Their needs, achievements and well-being become part of our priorities in an entirely new way, which is different to our relationships with the previous objects of our attention, such as friends, partners or parents. Within these relationships we were mainly concerned about ourselves, at least up until a certain age. A child is the first extension of our own existence, which has a more than purely biological meaning in the sense of transferring genes. A child is an expansion of our self and becomes the focus of complex practical and mental care which had previously been reserved for ourselves. We will worry more about our offspring than ourselves, and their well-being will matter more to us than our own.

A child becomes an offshoot of our self; a new role emerges which will gradually mature and transform during the process of separation. And just as we have certain expectations about our own life, this extension of our life also logically becomes the subject of expectations. These needn’t take the form of specific ideas about the future, such as whether a boy will grow up to be a famous footballer or study law at Harvard. It is more of a general feeling, surreptitiously informed by cultural stereotypes. Inside every parent is the hope that their offspring will be successful and happy on various levels – health, relationships, career and life in general.

These expectations are the first thing to be shaken by a child’s serious illness or lifelong disability. A rupture appears and the assumptions that everything will go as planned begin to disintegrate. Sometimes the discovery is shocking – a clear diagnosis with a predictable prognosis – while at other times there is a long, stressful period of uncertainty when it is unclear what’s happening and how things might unfold.

It was this second alternative that we experienced with Dorotka. The first problems appeared when she was around eighteen months old – slow development, poor motor skills. She couldn’t walk, and she was more difficult and wilful than other children. She was avoiding eye contact, as though her connection to the world was defined much more by her internal situation than external stimuli. Even in purely emotional terms something wasn’t right, as my wife sensed more strongly thanks to her mother’s intuition. There began a series of various tests, diagnostic observations, rehabilitation sessions. Another, still indistinct scenario began to ominously form around the automatic expectations of healthy development and a happy childhood – it could all be completely different.

At this stage, autism spectrum disorder is more unsettling for parents than other diagnoses because there are countless variations on this “different”. A child who appears severely disabled at the age of three might recover completely or, conversely, the situation might become even worse. They may start to talk or lose whatever speech they have developed. They may end up at a normal school with an individual curriculum, or a special school for children with more serious problems, or also – a reality in the Czech Republic – undergoing long-term hospitalization in a psychiatric clinic. There are some factors which serve as a possible prognostic guide, but in general it is very difficult to predict the outcome. There are always too many unknowns involved.

When I look back at that uncertain period when Dorotka was aged between two and four, I can clearly see how those initial expectations about her development were desperately struggling to survive within me. Petra was much more worried, unsettled, and in a way sceptical, which in retrospect was her just being more realistic. I tended to believe that there would be a positive change – something which was easier to cope with emotionally. When a family is in a similar situation, those around them try to encourage them and offer them hope that it’s probably not as bad as they think. It’s just that the doctors like it when a child’s development proceeds according to their charts and then kick up a fuss if there is any deviation from the norm. But isn’t the whole world made up of deviations from the norm?

At this point you hear and read a lot of phrases which you fit together to form a story that suits you. You don’t want to abandon your inner expectations, so you compose more and more versions of a future with a happy ending, which – although not impossible – is becoming increasingly unlikely.

After a while, our diverging views of Dorotka’s situation began to lead to conflict between myself and Petra. I accused her of panicking needlessly and suggested that her doom-mongering was acting as a self-fulfilling prophecy. She in turn blamed me for refusing to face up to reality in order to avoid the pain it would bring. Our dispute was ultimately settled by Dorotka, and I have to admit that my wife was proved right. Dorotka’s problems were now becoming so glaringly obvious that I could no longer bury my head in the sand.

However, my expectations, imbued with paternal pride, still refused to capitulate. I wanted to see her running to school with her schoolbag, dancing at her school-leavers’ ball and receiving her graduation diploma. When I was old and grey I wanted to hold a chubby little grandchild in my arms. It’s hard to say how much of this stemmed from the natural desires of a loving father and how much from a narcissistic attachment to the success of my genetic line or cultural notions of what a successful and fulfilled life should look like. I still can’t really tell.

In any case, my increasingly pie-in-the-sky expectations slipped through between the damning medical reports, sneaked past the psychological assessments, turned a blind eye to the increasingly abnormal reality of our days – and soldiered on. Although I could no longer believe Dorotka was healthy, there was still scope for believing that she could get better.

Translated by Graeme Dibble