Life as a Sibling: What Elsie Teaches Me

Elsie was still growing inside me when Lloyd was diagnosed. She has never known a family without tubes, pumps, therapy and hospital stays. To her, that's just home.

Siblings of children with disability grow up a little differently. Here's what Elsie teaches me, and what I've learned about making sure she feels seen too.

She sees her brother, not his diagnosis

To Elsie, Lloyd is her brother. He's funny, he loves loud music and he's hers. When Lloyd's feeding tube arrived, she named it "Trisha" and his IV pole "Patricia". She found the joy in the hardest season we've had.

Empathy comes naturally

Elsie notices when someone is left out. She knows people communicate in different ways, and that Lloyd talks with his eyes and his eye gaze device. That empathy spills over into how she treats everyone around her.

She carries more than she shows

Siblings can quietly take on a lot. Missed outings when Lloyd is unwell. Waiting rooms. Plans that change at the last minute. Worry they don't always have words for. It's easy to miss, because the sibling is often the one who seems fine.

Siblings Australia puts it well: siblings face their own challenges, and they need support to reach their potential too. Early support for the whole family, not just the child with disability, leads to better outcomes for everyone.

What I try to do for Elsie

• One on one time. Even 20 minutes that's just hers. Rainbows, dress ups and snacks are always involved. I use the time when Lloyd is with his support worker.
• Honest answers at her level. I explain Lloyd's condition in words she understands, and add more as she grows. Her questions are always welcome.
• All her feelings are allowed. She can love her brother and be frustrated that we had to leave the party early. Both are normal, and I try not to rush to fix it.
• Her own spotlight. Her school, her friends and her wins get celebrated in their own right.
• Helping without carrying. Elsie loves to help with Lloyd, and that builds her confidence. But she's six. Her job is to be a kid first.
• Things they do together. Music, bumper car videos and silly faces. Shared joy builds a sibling bond that can last a lifetime.
• Other siblings who get it. Meeting kids with a brother or sister like Lloyd helps her feel less different.

Where to find sibling support

• Siblings Australia: ways to support siblings, a practical guide for parents
• Siblings Australia: sibling challenges, to help you spot when your child might need extra support
• Siblings Australia programs and webinars
• Raising Children Network, for disability parenting information

To the siblings

You matter just as much. Your feelings are allowed, even the frustrated ones. And the love you show your brother or sister is one of the most powerful things in your family.

Elsie, you make our family brighter. Thank you for being exactly who you are.

Maya, RareWear founder and Lloyd and Elsie's mum