From the interviews with children series: Gosia tells us what it is like to have a brother with autism.
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?
Gosia (13): I can’t remember the day my brother was born, I was almost 2 then. Later, I only associated him with mum’s absence, because she’d always be taking him somewhere.
What changed after your brother was born?
My parents spent less time with me.
If you were to tell a stranger about your brother, what would you say? What would be important?
He has autism, and he’s two years younger than me. He functions more or less on the level of a 3-year-old. He can’t talk too well, apart from simple phrases, like, ‘Drink, please’.
What is he like? What kind of personality does he have?
He’s rather undefined. He’s irritating, he giggles all the time and does this [Gosia mimics Franek’s hand gestures].
He’s got absolute pitch, he’s calm and he tends to isolate himself. He’s bothered by sounds, he’s sensitive to noise and crowds.
Sometimes, in such situations, you can see that he’s feeling bad. He starts crying and goes up to mum.
What does he like?
He likes playing various games with our parents, reading books and playing with small, sensory toys [Gosia sometimes plays with him. She suggests playing herself, because Franek never asks her anything; she complements their mother’s role]. He likes challenges. Whenever he tries something new, like working out at the gym, climbing or skiing, he screams, but keeps on trying.
Does your brother’s disability affect how you feel? Do you notice any differences between your life and the lives of your friends?
Yes, it does. When I think how it affects me, I feel sad.
I don’t think that my life is different from the lives of my friends because of Franek. For instance, it’s hard to just go out with mum somewhere. You have to take Franek, whose behaviour makes you uncomfortable, or try to leave him with someone and plan ahead.
The fact that he’s disabled and sometimes difficult to control. He tends to draw everyone’s attention with him behaviour. His presence makes my life sadder.
My mum used to go take him somewhere all the time. I missed her. It was boring.
What helped you with the situation in your family?
My parents. You can talk to them, and they understand me and all. But I also have extra classes that I choose myself.
We used to read books about autism, like Kosmita [‘The Alien’ by Roksana Jędrzejewska-Wróbel]. They helped me understand that I’m not the only one in such a situation.
If you could, what you change about your brother?
I know it’s depressing, but I wish he wasn’t there. If I could change anything about him, then I’d wish she wouldn’t have autism.
Gosia’s parents talk about how they helped her daughter:
- When Gosia was younger, we tried to explain what autism is to her. It was difficult. Children’s books about autism helped. Kosmita is a big sister’s story. Gosia liked to read the book together very much, she looked through it herself and asked us to read fragments to her. We’ve also read ‘Russel is Extra Special’ together, but Gosia had no need to come back to it.
- I didn’t want to drag her along with us to sit in the waiting rooms. I preferred to leave her with her grandparents so that she could play at home and spend time with them. It’s clear that it wasn’t a good solution for her.
- We made most of our visits to specialists when Gosia was in pre-school. We planned our day so that I could take her to and from the pre-school myself.
- He planned different activities and time only for her. We added an hour with her father and an hour with her mother once per week as ‘obligatory classes’ to the calendar.
- Gosia went with me to the centres where Franek had classes, for instance during the winter holidays or the summer holidays. She liked getting to know these places and observing the children there. She asked me what was wrong with them. She liked talking about this.
We spent the time during Franek’s classes together: we went for walks, we ate ice-cream, we visited places or went for cultural events for children.
Gosia goes with us for all events in the centres that Franek attends: picnics, plays, Christmas meetings and so on. She comes with us if she wants – the decision is always her to make. She almost always goes with me to pick up Franek from school, even though she’s already a teenager.
- We have a repertoire of family entertainment in which we all take part. We’re usually able to organise our time this way during the weekends, and sometimes in the evenings during the weekdays. Franek usually just watches, but we’re all right with it. The important thing is that the entertainment is adjusted to Gosia’s need, so that she can choose what she wants to do with her parents herself.
- Gosia has always liked outdoor activities, such as taking sport or art classes. We try to schedule Franek’s classes in such a way that they don’t interfere with what Gosia finds important for her. She likes it when we pick her up from her classes, even though she’s already independent and goes there herself by foot or by bus.