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 the first thing you remember about your brother?
I remember being very excited and glad. I was late to preschool because I kept running to the room where Piotrek was and back to the lobby, so I couldn’t get dressed.
He was cool in the next few years, and quite active.
I was allowed to do fewer things at home, but it didn’t bother me. I liked Piotrek.
Then Piotrek started crying a lot and freezing in place, and got boring and irritating. He needed constant care, in a different way than before.
If you were to tell a stranger about your brother, what would you say? What would be important to say?
He has autism, which makes him irritating. He’s also dependent, stupid, extraverted, primitive and tends to freeze in place.
Is there any positive side?
It could be worse. He could need real care 24/7 and not let anyone sleep at all.
Does your brother’s disability affect how you feel? Do you notice any differences between your life and the lives of your friends?
Things have changed a lot. He saps my will to live entirely. I can’t rest because of him.
He makes it difficult to interact with Mum and forces us to change our plans often into ones that frustrate me.
We won’t go somewhere together, because… We won’t do something, because… We won’t get a moment of peace and quiet, because… We won’t get some sleep, because… Although that last part doesn’t apply anymore.
The people I’m in close contact with don’t have siblings. They have a lot of free time and peace and quiet.
What was, or what is, the most difficult part about your relationship with your brother?
The lack of free time, the constant irritation, the feeling that my home is an insane asylum that revolves around a single patient. Mum sacrificing her time to meet different psychologists, write e-mails, and so on.
What would you like to do if you had some time free from Piotrek?
I often have moments when Piotrek doesn’t bother me directly. However, if I could really have some time without him, like if he went somewhere, I’d spend a lot of time with Mum.
What would you do then?
I’d play board games, talk with her, help her prepare dinner, and so on.
What helped you with the situation in your family?
Mostly playing on a computer, completely isolating myself from all people. To a lesser extent, talking and playing board games with my parents. I force myself into an ‘I must live through this’ strategy.
Do you remember the things that helped you understand and endure the situation at home when you were younger and all of this was only beginning?
I don’t remember anything that would make it easier to endure. Fortunately, they published the book ‘Alien’ (in Polish, Kosmita) about children with autism. It gave me a painless way to learn what was wrong with Piotrek, and this helped me understand the situation.
If you could, what would you change about your brother?
I’d want him to stop existing or stop having autism. But even if he did stop having autism, all this infrastructure would still be there. Mum would still have contact with all those psychologists. But I’d be able to talk with them, which would make things better for me. He wouldn’t need to be taken somewhere all the time, and I’d get more peace and quiet and contact with my parents. I wouldn’t have anyone I hate on my list, because that’s very ugly mentally. It’d get rid of a good chunk of the irritation I’m feeling.
I’d like to have my own room.
Kuba’s parents talk about how they try to help their son:
- We made the effort to explain to him what was happening to his brother and what autism was. We read books about it with him;
- We try to give Kuba as much peace and quiet as we can. The boys usually stay in different rooms when we’re home. We don’t expect Kuba to get engaged in his brother’s therapy or to care for him;
- In the past, we tried to arrange playtimes together, but it didn’t work out at all;
- We allow Kuba to talk what about what he’s feeling and thinking, and we tell him that we understand his frustration. We teach him to respect all human beings. We point out to him that he’s important to Piotrek. That Piotrek observes him and learns from him. That he wants to be with his brother;
- Kuba is under psychological care. We make sure that his teachers, including new form teachers, know about his situation at home.
We sometimes inform the school that Kuba has had a bad night or a difficult event related to his brother and ask for their understanding in case Kuba has problems functioning at school.
- When we decide on new goals to achieve with Piotrek, we let Kuba join the discussion about which of Piotrek’s skills are important or urgent to learn, and we take his opinion into account. We talk about what Piotrek is be able to achieve at the moment and what he wouldn’t be able to and why. We make sure that Kuba understands this;
- We make sure that Piotrek has a daily household chore to do;
- Sometimes, when Piotrek has individual classes at home, I spend time with Kuba according to his rules: we do what he feels like doing. On such occasions, Kuba often tells about things that he finds interesting, important or exciting. His father teaches him programming; that’s when no-one is allowed to disturb them.
Do you work with children with special needs and want to tell your story?