From the interviews with children series: Kate tells us what it is like to have a brother with Asperger’s.
What is it like to have a sibling with Down syndrome, Asperger syndrome or autism? How does disability affect the lives of siblings? What problems do they have to face? What does their everyday lives look like?
What is your first memory of your brother?
Kasia (8): I can’t remember.
If you were to tell a stranger about your brother, what would you say? What would be important to say?
I go to school with Marcin. He’s taller than me. He has dark brown hair. He sometimes acts up, gets angry, sometimes for no reason. He’s nice. He’s interested in video games. I love playing with him.
Does your brother’s disability affect how you feel? Do you notice any differences between your life and the lives of your friends?
It doesn’t affect me that much, although Marcin annoys me sometimes, when he messes up lyrics for songs or when he doesn’t listen to what he’s told. I sometimes get angry that Mum takes him for different classes, while I stay at home.
What was, or what is, the most difficult part about your relationship with your brother?
Playing with him. Marcin prefers to play different games than me.
Sometimes our friends only invite me for birthday parties. They don’t want to invite my brother.
What helped you with the situation in your family?
I can always count on him keeping me company. I don’t have to be alone.
If you could, what would you change about your brother?
I don’t know. Maybe I’d change one thing. I wish Marcin would play other games, too.
Marcin has Asperger syndrome and cerebral palsy.
Kasia’s parents talk about how they try to help their daughter:
- We talked about health problems with both our kids;
- I played together with them (the mother), helped them name their emotions and needs and mediated during conflicts (when they were younger);
- When Kasia started complaining that we spent less time with her, we explained that sharing equally is not always the best solution. We told them that part of the time was spent on rehabilitation and medical treatments (such as blood sampling), which weren’t fun. If we were to share equally, she’d have to take part in the rehabilitation and treatments, too. At the same time, we tried to compensate for the shorter amount of time by coming up with activities dedicated specially for Kasia (such as baking cakes together). In general, activities dedicated specially for either sibling turned out to be very effective;
- Kasia also had great difficulty sharing her toys, maybe because Marcin completely ignored the idea of ownership (for example, he would eat soup from someone else’s plate or a sandwich that his sister made for herself).
Sometimes, Marcin would also break Kasia’s things when he was playing with them. As a result, Kasia reacted hysterically whenever he tried to touch her toys without her consent.
So we decided to divide the toys into shared ones, ones that belonged only to Marcin and ones that belonged only to Kasia. Kasia kept her toys in a locked cabinet (Marcin felt no need for it). After some time, the problem disappeared, and sharing toys no longer involved any complications :);
- In a similar manner, dividing the room (when they were younger) into two parts, so that each sibling could have their own spot, also turned out to be a great solution; Later, Kasia moved to a separate room. This allowed our kids to go to sleep and get up at different times during the weekends and eliminated conflicts on the lines of ‘I can’t play when you play’;
- We also tried not to ignore any signal that either child feels neglected, even though we were aware that such signals might not stem from a real feeling of harm.
- Now that our kids are older, we must also pay more attention to how much money we spend on either of them. While Marcin doesn’t care about the cost of a gift or therapy and learning sessions, Kasia is more mindful of it;
- If any problems come up, we always take care to talk with the kids, give them our arguments and negotiate with them.
Do you work with children with special needs and want to tell your story?
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