«Your child faces so many challenges!»
Sara Satir reports on her everyday life as the mother of a disabled son in the «A different perspective» column. This time, she writes about the worries – but also the hope – that came with the diagnosis.
While I was working on digesting the fact that my son had an intellectual disability, further examinations revealed he also had cerebral palsy and autism spectrum disorder. This offered me an explanation for his behavioural problems and motor impairments. Although the many examinations and diagnoses helped me to understand our son’s development, I was still burning with the question of what had caused his disability. I hoped that an answer would help to make the grief for our «lost dream child» become more bearable. But not even the geneticists could tell us. The «why» question went unanswered.
During one examination, a doctor said: «Your child faces so many challenges!» This statement hit me hard, but it also gave me hope. After all, each of these challenges could be tackled in turn. It meant something could be done! The doctors prescribed one form of therapy after another, and these soon started to fill up my weekly schedule. It seemed to me that my son’s challenges were now dictating my life. His little brother said, as soon as he could speak: «I want therapy too!»
Every therapist had a different focus. One prioritised his weak muscle tone, while another saw the lack of eye contact as a key issue. Each and every issue seemed to be urgent, and I was soon completely overwhelmed. When my son refused to go to the occupational therapist, I started to get desperate:
Does the therapy make sense if the child doesn’t enjoy it? Is this all about his personal development, or about making him fit our standards as much as possible? What does it do to me as a mother when I focus all my attention on my son’s deficits? And what does it do to his self-worth? Can I still be a good mother if I don’t do it all?
I gradually gained the courage to prioritise certain therapies, take a break with others, or reject some of them altogether. Therapies and doctor’s visits are still a part of our everyday lives, but they no longer dominate our whole existence. My aim is to direct attention away from the challenges, and towards the essential. And the essential when it comes to my son is his personality – which is complete, and unique.
But the pain about the challenges continues, as they disappear and reappear in new and unexpected ways. There are still as many of them as ever.
Sara Satir (42) wanted a family from a young age. Her first son Cem (17) was born disabled – reality was turning out very differently from the dream. She has been working as a coach in Winterthur for 11 years and supports people in overcoming challenges in their personal lives.
Photo/stage: © MDB Fotostudio