My child is different

What kind of person is coming into my life, into our lives? What character traits and interests will my child have from me, how much will it carry from the other parent? Will it be quiet or wild? And how much will it resemble its siblings? What will he or she be like as an adult?

As parents, we almost automatically develop ideas about our children and our role as mum or dad. In everyday life, we are faced with the task of seeing our child as they are - and perhaps letting go of certain ideas and expectations.

Some parents find this difficult even on a small scale: when they have to accept that their daughter prefers to programme on the computer instead of getting on her racing bike with her father, when their son «doesn't fulfil his potential» and misses out on the chance to go to grammar school, when you yourself are sociable and look forward to dates, but your own child is so introverted that they hide away in their room as soon as visitors ring the doorbell.

Other parents face greater challenges: Not only does their child deviate from parental expectations, but the environment and society also constantly reflect back to the parents that their child is «completely different» and in many ways «does not conform to the norm».

In recent years, I have come into contact with this topic time and again, whether in my diagnostic work when I had to report back to parents that their child had been diagnosed with an intellectual disability, in counselling parents of children with behavioural problems or in my personal environment. I believe that we can learn a lot from these families: about unconditional parental love, resilience, optimism, humility and gratitude, about integrity and dealing well with difficult feelings.

«Something's not right ...»

Some parents have a vague feeling from an early age that their child is «somehow different» - very often before specialists have even realised it. Georges, a father of four, explains: «I realised something was wrong right after the birth. My son had E.T.-like features: too much skin, much wrinklier than usual. The midwife said at the initial examination that everything was okay. However, I realised that she was insecure and wanted to reassure me by lying to me. I saw that she pulled our newborn's lower lip down several times, but it didn't go back up elastically.»

Sara was also worried about her son's development early on: «He lay in my arms like a rubbery creature, couldn't sit up at the age of one and just lay around on his blanket,» recalls the mother, who was initially reassured by the doctors time and again.

It often takes years before a diagnosis is made. It is initially a shock for many, but can also bring relief.

Many mothers and fathers report that hope, helplessness, doubt and feelings of guilt characterise this time of uncertainty. On the one hand, there is the prospect that although the child's development is delayed, it may still catch up. Perhaps it needs more support or therapy? On the other hand, there are increasing doubts: What am I doing wrong? Why is my child like this? Should I have done this or that? Or am I a helicopter mum and just imagining things?

The feelings of guilt are sometimes reinforced by the environment. Daniela, mother of a son with severe ADHD, reports: «For a long time, people didn't know what he had. My own family and those around me often reproached me: 'You're not capable of parenting! You have an impertinent child! He doesn't listen to you at all! You spoil him too much! How dare you bring a second child into the world when you can't handle the first one!»

It often takes years and countless investigations before the parents' initial observations are followed by a diagnosis. This is initially a shock for many families, but can also bring relief and new perspectives. Interestingly, several research findings confirm that people who know that their impairment is permanent live happier lives in the long term than those who believe that something can be done about it.

Georges says: «When our son was six years old, a genetic researcher found out that he had Williams-Beuren syndrome. That was very relieving for me. We finally had a clue and felt that our observations about his development were understood. The long period of uncertainty beforehand had put us under pressure because we parents and those around us always compared our son with the normal. From this perspective, the focus was on the minus. The diagnosis turned the tide - towards the joy of what was possible. We were happy about every step forward. And what our son couldn't do or only partially did, we were able to accept better because it was part of his speciality.»

There were many images associated with the desire to have children that I had to say goodbye to.

Sara, mother of a disabled son

For Sara, too, the news that her son had a mental disability was both painful and relieving at the same time. She was also able to gradually free herself from feelings of guilt and look to the future. However, a diagnosis like this also brings new worries and fears, for example: Will my child be able to learn a proper job and live independently? Will he find a way to deal with his difference or will it break him? What will happen to him when I am no longer around?

What helps families in this situation? For Georges, focussing on resources and an inclusive attitude are important: «It always helped me when people asked straightforward questions about how my son was developing, what he was achieving, where he was special and where he had talents. And then also where he or we as parents stumbled. All children, even those with a slight or severe and obvious impairment, have dignity, are a gift to the world and have a right to a life that is as self-determined as possible.»

Between grief, acceptance and joy

For Daniela and many others, networking with other parents who experience similar things was empowering. She says: «When I went to the ADHD parent discussion group and heard about similar problems, I thought: Now I feel understood. At last I can talk about what it's like for us.»

Sara emphasises that it is important for her to be able to mourn everything that is denied to herself and the child: «The desire to have children was linked to many inner images that I had to say goodbye to. It takes a long time, maybe it never ends. The grief comes in waves. But if you know you are allowed to grieve, then you can also allow new images and be happy about them.»