A family taking a selfie outside.
16 Nov

Seeing the Siblings: Siblings Australia

I’m “Mum” in a blended family.

I also grew up the eldest of three.

My brother, sister and I have each other’s backs whenever we might need it, wherever we are in the world. We can argue in a way that makes my only-child husband think our relationships are done for, but he’s also learnt that whatever the ferocity of the argument, it’s wise to stand aside – and it will always blow over.

Similarly, my son and daughter will squabble if one sits too close to the other on the couch. If I try to intervene, they unite as one.

It wasn’t until I became the step-mum to my step-kids that the issue of differing relationships between kids with a disability and their siblings was brought into focus. M is now 9, and she is autistic. She is nonverbal and often lashes out when we are unable to anticipate her needs, which is frequent.

Her brothers and sister – and I use those words encompassing the children that I brought into this relationship – are incredibly understanding of the fact that sometimes we need to prioritise M. Sometimes she breaks their things, sometimes her behaviour in public embarrasses them, but we work hard to make sure that they don’t build resentment towards M or the impact her disability has on their lives.

So, the relationship that I’d grown up with, and the ones my kids had prior to my current marriage? Very different; disability wasn’t at the forefront of our lives. Now life largely sits around M being autistic. That’s just our reality.

And that’s the reality for a lot of families – their “normal” (and our “normal”) is different because of M and her needs.  

It makes total sense when you stop and think about it. But I’d never had reason to pause before.

Now, as Chief Executive of the only organisation in Australia solely focused on supporting siblings of people with disability, it is the focus of my days.

Kids who feel invisible because their needs aren’t seen as “urgent” as those of their brother or sister. Young people who feel like they need to be grateful because they don’t have a disability. Some children missing out on sporting activities because mum or dad is too busy getting the other child to another appointment.

Or mum or dad are too exhausted tonight because there’s been so many appointments, and this other bit of running around is too difficult amongst other commitments.

Siblings are a highly vulnerable but often overlooked cohort.

Many adult siblings report high levels of anxiety, depression, and family stress through their childhoods.

For families, it can become all too easy to focus on the issue that is pressing today: getting the right therapists, making sure that supports are in place, ensuring the child with the disability is safe and stimulated.

And the sibling? Look, they are fine. They understand. They know the realities.

But we are the adults in the room. And sometimes, we don’t understand. We get burnt out. We feel that it’s unfair.

So why should we expect that the other kids in our families, who don’t have the agency we have, the cognitive development that we have, the ability to say “I need to step out for a moment for a break” would?

That’s why these kids are referred to by some as “glass children” – you can see right through them, and right through their needs.

That’s why Siblings Australia exists. We are here to advocate in policy and practice for the needs of siblings to be central.

If there was any other group of children, that research told us, 54% of them were likely to be suffering from depression at any one moment, it would be unfathomable that no action would be taken. But that’s the facts: 54% of adult siblings report that they experienced depression in their childhood, and 66% reported anxiety.

Parents and professionals need to recognise that they may need additional supports to address the challenges these kids are facing, and not just assume they are doing fine.

We need to support these kids, not look through them.

And supporting them doesn’t take a lot of work. It means spending time with them, acknowledging them and equipping ourselves with the skills to support them.

It’s making the time and space to make sure that they aren’t always having to just “deal” with what’s going on around them.  

The daughter I brought into the world recently had a science expo at school. She made a sensational space diorama. It was the first year she’s really been old enough to pull together her whole display with very little input or assistance from her adults.

But you’d better believe my husband and I watched that project like hawks – M does seem to have a radar for my daughter’s things and pulling them apart.

That diorama waltzed around the house to various locations outside of M’s eyeline. Each time my daughter got up, my husband or I leapt to make sure it was out of reach. It made it to the science expo, and it’s now back home again.

My little girl is very proud of her efforts, and for not much extra work on our part to make sure her project was kept out of the way, her needs were taken care of.

One day, my husband and I won’t be here. It is unlikely that M will ever develop much communication ability, and she will not be able to advocate for herself. It will sit with her siblings to take on that role, and it will sit with her siblings to make sure that she is safe, wherever life takes her.

Family is the foundation of society; and the sibling relationship is the longest relationship of a person’s life. We need to make sure it is strong and supported.

Written by Dr Shannon Schedlich, Chief Executive of Siblings Australia.

To find out more about Siblings Australia and how they can support you and your family, you can visit their website.

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