20 February, 2017

Sara tells about her relation to her brother Nils, who was born with cerebral palsy and epilepsy, and shares her experiences from their life together as young kids. Today Sara runs a network for siblings; “Siblings by Passalen”.

How would you describe your family as a kid?

In my family there were me, my mother Anja, my father Anders and my two siblings who are twins; Stina and Nils. They are 2 years younger than me. We were brought up in Vänersborg in Sweden, and from my perspectives at that time I had a very normal youth. I remember us running back and forth to our neighbours, a bit like in the book about “Bullerbyn” written by Astrid Lindgren. My brother has cerebral palsy, epilepsy and a learning disability – but that didn’t mean that he didn’t play together with us. Apart from the fact that Nils went to a special school when we got a bit older I actually didn’t think much about that we were any different from others. Actually, this is something I have started to reflect more about lately – how much we did adapt the things we did as a family to the fact that he had his disabilities. And special abilities. But at that time it was the normal way for us.

What did you like to do together?

When we were very young we played a lot outside. We were biking around and played together with the kids in the neighbourhood. And during the summers I specifically remember our vacation trips. We travelled together all five of us to a family resort in Denmark quite many times.

But I remember the constant fights between us siblings as well – just like any family with three small kids I guess. We were very close in age – and quite often all the three of us ended up lying on the ground fighting with each other. When we travelled by car together with friends they always got to sit between us, like a side airbag haha.

How would you describe your relation as siblings?

Even though Stina and Nils are twins it was more like if Stina was the middle child. I was the oldest one and with the experience of having been a single child in our family I quite often took the role as the one deciding what to do. Stina got to handle many things on her own since mum and dad often were very busy with Nils. I guess that made her very independent. For example she moved to live on her own already in high school.

Today I would say that me and Nils have a very close relation. We share a big interest in watching movies together when we meet. I also worked as a personal assistant to Nils for 10 years. However, today we don’t live in the same city anymore, but we send each other text messages, go to visit each other and have the same sense of humour. He has a fantastic timing when he tells a joke! Today Nils lives together with mum and dad in their house. There he has the second floor to himself. Usually we meet at his place and he always likes us coming to visit him, but it has better be on his conditions – activities we do must include his big interests; movies, cinema or antiques!

Nils & Sara Hellman
Nils & Sara Hellman

What is Siblings by Passalen?

“Siblings by Passalen” is a Swedish network for siblings having experience of living in families where one child or several children have some kind of disability/special needs. The network is a way to meet and handle the feelings of loneliness that may occur – to show that as siblings they are not alone, and to offer a way to connect with others and share experiences. Often there are many more persons sharing similar experiences than they can imagine.

The network is funded by Arvsfonden, which has given us the opportunities to have networks for both young and older siblings in Gothenburg, Kungsbacka and Karlstad. With the networks for young siblings we arrange different activities together. Some of them have a big need to reflect and talk about their feelings and experiences while others just like doing things together and find it great just to get to know and connect with other siblings. In our network with older siblings we have more of talking sessions; we take a coffee and discuss different topics. It can for example be about what it feels like to have friends at home or other things that you don’t want to discuss with your parents.

What is the plan ahead for Sibling by Passalen?

This spring we will continue with both our network meetings and also run a book project. The target group for the book will be siblings in the age of 8-12 years old, and what we want to do is an inspirational book. We don’t want to create any specific learning material in a traditional way, but rather a book containing stories and situations which siblings can recognize and perhaps identify themselves with. The content will be based upon interviews with siblings in different ages.

We also run a closed Facebook-group where siblings can share experiences, thoughts and feelings or ask each other questions. This group is open to everyone in Sweden  – no matter where you live.

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