I was late for rehearsals. Again.
Mum couldn’t drop me to school, like we planned. But it wasn’t her fault; my sister Lily was throwing one of her occasional morning tantrums. Her favourite doll was lost the night before. As she started to scream, she slipped, hitting her arm against the table. Blood started to run and I ran for the first aid kit. Mum began to calm her down, singing Lily’s favourite repetitive tune.
I was over 30 minutes late. I tried to explain, that I had to look after my younger sister. The teacher nodded, “Baby sister? They can be a handful.”
But Lily wasn’t my baby sister.
Lily was 13 years old.
***
I will never forget the day my mum told me my little sister was different. I was coming home from kindergarten, gloating about the Christmas play. My mother’s face was dressed in despair. ‘Autism’ she said, very slowly, as if that would help me understand, and, to a point I think I did.
Lily’s condition means she isn’t able to communicate properly. She finds it hard to understand people’s facial expressions or the tone in their voice. Lily won’t understand jokes, as her mind only allows her to take things literally, not metaphorically. Whilst she usually understands what other people say to her, Lily has a very limited vocabulary and prefers to use alternative means of communication, such as sign language or visual symbols.
Socialising doesn’t come naturally to Lily – she hasn’t learnt the unwritten social rules which most of us pick up without thinking, such as standing too close to another person, or starting an inappropriate subject of conversation.
But sometimes I envy Lily. Simple things like the autumn leaves are enough to make her giggle for hours. She is happy with who she is and will never have to deal with the normal adolescent pressures the rest of us have to face with friends, parents and school.
With only Mum and I to look after Lily, life usually gets on top of me. People often ask if it is tough living with a disabled sibling….
After waking up Lily in the morning, if you don’t do everything in the same order as the day before, at the precise moment, it’s enough to ruin her entire day.
My home becomes invaded with teachers, social workers, carers and doctors, for hours of intense one-on-one therapy the hope that Lily will lead a better life someday. Friendships are lost, parties are unattended and luxuries are scarce after all the medical bills are paid for.
I often lose my temper with my sister and say hurtful things, and then I feel disgusted in myself as I see the hurt and confusion in her eyes. I used to cry for hours at a time, wishing I didn’t have to deal with Lily, then cry even harder for thinking such things.
I love Lily so much. But it’s hard. It really is. I know that Lily needs constant care and attention and I understand that, but sometimes it just doesn’t make it any easier. I have had to sacrifice so many things in my life because of my sister’s autism. In some ways I feel more like her mother that her sister, but that is the way it is.
This article by Kate Jordan, from Loreto Kirribilli, was the Year 9/10 Winner (and the overall competition winner) in What Matters? 2009
What Matters? is a writing competition, run by The Whitlam Institute, that gives year 5-12 students in NSW and ACT a chance to say what matters in society today. For more information go to: http://www.whitlam.org/whitlam/index.php
