29 March, 2019

Growing up with a sibling with a disability is often something that affects a person in many different ways and gives the person additional perspectives and many thoughts through life. The organization Bräcke Diakoni is currently running the project “Vuxensyskon” (“Grown up siblings”) which emphases the sibling’s perspective.

Maria and Rakel standing in front of a lake looking into the camera
The project leaders Rakel och Maria | Photo: Gert Holmér

Rakel Lomér and Maria Blad are the project leaders for “Vuxensyskon” which is driven by Bräcke Diakoni in collaboration with Nationellt kompetenscentrum anhöriga, RBU, FUB, Autism & Aspergerförbundet and Studieförbundet Vuxenskolan.

We got the opportunity to talk to Rakel at a conference for parents and families with children with intellectual disabilities, and asked her to share some reflections from the meetings and workshops they have had with the grown-up siblings. We also asked her to share some advice and tips with parents who have younger kids both with and without disabilities.

– The most important thing that many of the siblings we have met have spoken about was the fact that they had experienced some subjects to be “unspoken” in their families. It could have been subjects related to difficult feelings, questions that seemed “tabu” and questions about the future – about home and caring when the parents are no longer there.

Rakel continues:

– We have taken part of a report from Norway where one of the conclusions was that it is very important for these siblings that the parents have the ability to talk about, acknowledge and confirm feelings of confusion och difficult feelings as well as to explain actions and consequences that might seem unfair for a child. By having a dialogue about those subjects within the family it gets easier for the sibling to accept the feeling of something being very unfair for example.

When Rakel and Maria tell us about their work and the subjects that often appears in their discussion groups with grown up siblings, they say that one of the area that many siblings wants to talk about relates to feelings of guilt and shame. Rakel explains:

What the siblings express is not that they are ashamed of their sibling with a disability, even though this could be the case for some of them sometimes as well, but rather they wanted to talk about feelings of guilt in other perspectives connected to difficult paradoxes; like feeling guilty because of the fact that their sibling with a disability didn’t have the same opportunities, or feeling stressed because they didn’t do more with their lives when they actually had the possibilities.

It is important to remember that children are children. They often read things in their own way, interpret situations and make own conclusions based on parallel patterns. That is why the conversations between parents and children are so important, Rakel continues. A child can have the feeling that it has injured its sibling in some way, or that its own life is much less important.

Two persons on a bridge
Photo: AnnaCarin Isaksson

Maria and Rakel tell that there is a material called “Opratat” (“Unspoken”) which has been produced by Funktionsrätt Sverige. This material concludes films and stories based on experiences from the project “The unspoken between child and parents” and is a good way to start to talk together with a child about difficult subjects.

Based on the siblings we have met, we can see that the picture of siblings being, and becoming, very empathetic is true. At the same time the siblings say that they often were told exactly this as kids; that “they were so responsible” – a saying which they also experienced could be filled with demands. The expectations of how they were supposed to act in different situations, also made it difficult for them to appear weak and vulnerable.

It is not that the siblings didn’t understand that their parents had a lot to do, were tired and that it was difficult to be fair as a parent in every situation. But to point out the fact that it sometimes is unfair, and at the same time confirm and see the sibling when possible – that one’s place in the family does not become 0%… That is extremely important!

Maria and Rakel sum up some advice for parents and families with children, where a sibling has a disability:

• Explain why it is sometimes “unfair” if, for example, the sibling with a disability gets much more of the time and attention.

Talk! Especially about things that can be difficult. Children need to talk to adults to understand.

Give siblings a chance to meet other siblings and give them the opportunity to talk outside their own family constellations.

Be careful not to only confirm the sibling’s achievements. It is ok to be a child when you are a child.

The project “Vuxensyskon” has also produced a theater play, “Skuggsyskon”, which is played in different places in Sweden. “Tankar om Skuggsyskon” is a short movie about the play which you can find here.

You can read more about the project “Vuxensyskon” here.

The material “Opratat” that has been produced by Funktionsrätt Sverige is available here.

We also recommend the book “Litet syskon” written by Christina Renlund which contains tips about how you as an adult can talk to children about having a sibling with a disability.

Banner photo: Andi Weiland

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