Sibling stories: 26-year-old Anna tells us what it is like to have a younger brother with Down Syndrome.
What is it like to have a sibling with Down syndrome, Asperger syndrome or autism? How does disability affect the life of siblings? What problems do they have to face? What does their everyday life look like?
What is your first memory of your brother?
Ania (26 years): My first memory is about the moment I learned that my mum is pregnant. Then I have a few memories from this period. But my very first memory specifically about my brother is of the time I arrived at the hospital, when Piotrek was already several days old. The doctors didn’t know if he’d have to have the duodenum blockage removed or not yet. I can’t remember if I ever carried him in my hands at the hospital. I must’ve had. I only remember that he was so very small, so helpless. My mother couldn’t get over the fact that she wasn’t able to be with Piotrek all the time. That she slept at home, instead of at the hospital with him. I also remember the day they came back home. And I remember it moved every time I looked at him when he was sleeping. So helpless, yet so many challenges if front of him…
What changed after your brother was born?
Not much changed in my life. I was in my second year of high school. I studied, I went to school. And at home, a little bundle was waiting for me, a little bundle that I loved to spend time with.
At the beginning, you couldn’t even tell that he was disabled. He developed more slowly, that was all, but he was very social. He liked playing with us, fooling around and hugging us. It was a relationship that you’d have had with a normal younger brother.
My parents, on the other hand, (mostly my mother) had a very task-centred approach: they focused on rehabilitation, early development support and visiting the early intervention centre on Pilicka Street. They had a hard time raising older children together with the little one, who demanded so much attention.
If you were to tell a stranger about your brother, what would you say? What would be important?
Piotrek is very social. He likes sport, he plays football, swims and rides horses. He’s almost 9, and he goes to school. His speech is getting better. He’s very independent. He has Down syndrome.
Does your brother’s disability affect how you feel? Do you notice any differences between your life and the lives of your friends?
Piotrek helps me get used to disability. He gives me courage by showing how important and precious life and happiness are. But not the happiness as the world sees it, but the happiness of every human being. He shows me that you don’t need education, a magnificent intellect or beauty to be happy. You can be happy arranging the screws in your workshop, attending occupational therapy classes, working anywhere and doing anything that brings you joy. But I can’t see any particular difference between my life and my friends’ lives. Because apart from that, I’ve settled down in my life: I’m 26 years old, I have a husband and three sons, which is unique among our friends. But I don’t know if Piotrek’s Down syndrome had an impact on this or not.
What was, or what is, the most difficult part about your relationship with your brother?
My parents’ fear. The fact that I’ve seen them helpless. They always knew what to do, but when Piotrek was born, they were thunderstruck.
I was also worried a bit, and still am, about what’s going to become of him. How long will he live? Will he be happy? Will he be independent, or will he need our help when our parents are gone?
What helped you and your family in your situation?
Prayer, at first. After Piotrek was born – support from my boyfriend (who’s now my husband) and help from my relatives (my grandmother, my grandfather and my aunt). Currently, I’m not looking for support in this respect 🙂 Piotrek is who he is. We accept him completely.
If you could, what you change in your brother?
I’d give him clear speech. Piotrek has problems with articulation and with using pronouns and prepositions correctly. It’s really hard for him, and you can see that he’ wants to communicate and tell other people things very badly. You’d have it much easier if he could talk better 🙂