Maude, a young caregiver: "I'm there for her, she's there for me"

I think of a cheerful person who always sees the positive side of things. Maëlle has been diagnosed with autism level 1. She has a hypersensitivity that can sometimes lead to disorganization. With an empathy that most autistic people don’t have, she wants to help others and thinks about others all the time.

I don’t remember the diagnosis, I was very young. As a child, I could see that Maëlle was different and that she wasn’t like my brother and me. I would ask questions. My mother would explain to us that Maëlle would be doing certain things differently all her life. She told us that our big sister was a bit like a little sister. We loved her just the way she was.

When I was a child, I already knew I had to take care of her. For example, at school, I didn’t want the others to make fun of her, so I took her under my wing. I was a more independent little girl than other children my age.

We have a pretty positive relationship. I’m there for her, she’s there for me. It’s a relationship of help and assistance. I help her with a lot of things: when something happens in her life, when she needs to talk to someone who’s not her mother or father… For me, being a caregiver and being a sister are one and the same. It’s a full circle!

Since I moved to Ottawa for my studies, I’m not as present in Maëlle’s life. She can call me at any time and … she calls me a lot! She says I’m one of her best friends.

But it’s different for my brother. She also calls him quite often. He devotes time to her, whereas he doesn’t always answer me!

We’re a close-knit family. My mother made sure to give as much attention to my brother and me as she did to Maëlle. The whole family supports Maëlle, each in their own way. Maëlle often has dinner at my grandmother’s, who takes her Pokemon shopping!

I myself support Maëlle mainly emotionally. Being a psychology student helps. She asks me questions and, with my answers, I get her to think about certain issues. For example, I ask her why she reacted the way she did and how she could have behaved differently. She often thanks me for helping her see things through. When faced with a disorganized situation, she thinks of our conversations and that helps her.

I’ve often felt it was too much for my parents, who are often exhausted.

But I never felt it was too much for me. Perhaps on some nights, when Maëlle repeatedly seeks me out… I tell her I need to have time to myself. She understands. Sometimes, on her own, she says she’s sorry and understands my need to be in my own world. Maëlle is very intelligent and I’ve never met anyone so empathetic!

One of my challenges is the need I just mentioned: to have my own space. Maëlle may call me 15 times a day. I tell her, “Maëlle, if it’s not urgent, just send me a message instead of calling me!” So, the main challenge is communication, and we work on this aspect together.

Sometimes she misinterprets what I say. Things can get out of hand and become disorganized. So I correct her and say that’s not what I meant, and so on. It’s normal, but sometimes I find it hard to pay constant attention to what I’m saying.

I have a routine. When I’m at school, I’m at school. In the evenings, if I have free time, I can be available for Maëlle. At my parents’ house, I’m more available for my sister. I find a balance between being a sister and being a caregiver.

When I was little, I used to wonder what the impact would be of telling people I had an autistic sister. A few friends were always aware of my situation and very open about it. As I got older, I realized that some people reacted negatively to Maëlle’s condition. But my sister is autistic and always will be. If these people can’t understand that, they’ll never be close to me!

Today, I talk openly about my role as a caregiver. Studying psychology helps; the subject of autism interests me. My friends are in psychology studies too, so there’s an openness there. I talk about it more now than I did when I was younger, when I didn’t necessarily understand the way others looked at autism.

Yes, every situation is different. I work things out this way with my sister, which doesn’t mean it’s going to be exactly the same for anyone else. On social media, I share moments of life with my sister, which is positive and fun to watch, but it’s not the only reality.

I also want to say that helping is good, but taking time for yourself is good too! When I was younger, I looked after Maëlle a lot because I wanted to help my parents. One day, my mother told me that I didn’t have to do so much. So, think of yourself. Take it one day at a time. Strike a balance.

• POV: tu aides ta sœur à lui trouver des vêtements;
• maude.koz on Instagram;
• Being a young caregiver;
• Autism Spectrum Disorder (ASD);
• Balancing my compassion;
• Dossier Aider les jeunes aidant.e.s à s’épanouir de Proche aidance Québec;;
• Find resources.

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