REAL LIFE: “I’m the mother of a child with a disability – this is my wish for her future”

By Steph Wicks, Co-founder Kindship

I am a mum like any other. I run my life fueled on coffee, school schedules, birthday parties, homework and I stay up late most nights worrying if they are happy, if they eat enough vegetables and if I can survive on three hours’ sleep.

One thing that you might not know about me is that my youngest daughte – Charlotte who is six years old – is autistic, which means I also spend many nights lying awake worrying about extra things like NDIS plans, sensory toys and visual schedules.

It was in late 2018 that a trip to kindy gym saw us sitting underneath a trampoline mid class. I felt my cheeks burn hot as I held back the tears. I watched my girl hide, covering her ears and watching the springs squeak in and out.

Instead of lining up like her peers for her jump, she just wanted solace. It was the fifth week in a row this had happened and I knew then, in that moment, that my baby was different.

At that point, I didn’t know anything about autism. Seeing other groups of parents huddled around tables drinking coffee and laughing made my heart ache. The loneliness was profound.

Little did I know, we would go on to find our people too.

Four years on and I am forever passionate about changing the narrative around disability and helping other families come up for air.

In turn we can become better parents and humans for it. Sometimes, we just need to know we aren’t alone and to say “this is hard” without judgment.

We need to consider that disability can look different on each individual and to show a little empathy instead of judgment. This hasn’t always been handed to us along the way and has possibly been our biggest hurdles.

We have had strangers say “she doesn’t look autistic” as if autism has a look.

Or the line “Everyone’s a little bit autistic” met with a sad look and a pinch of pity.

Recently someone mentioned to me “They hand autism diagnosis out left right and centre now, don’t they?” as if the diagnosis of our daughter was as easy as visiting a GP for a script of antibiotics. If only they knew it took a team of support people, paperwork, waitlists and one amazing specialist to get the diagnosis on paper.

Her autism presents differently. Her disability is invisible. She masks each and every day just to fit a world that doesn’t accommodate her. It’s not an illness to be cured, it doesn’t make her less intelligent. Her diagnosis and the label is another part of her but it’s not who she is.

She doesn’t need to change, the world does.

So, what can you and we as a society do better?

We can take opportunities to immerse ourselves and our families to different types of people and minds.

We can choose kindness over judgment.

We can offer a kind word of encouragement to other parents. We can respectfully ask the questions and respectfully, and genuinely listen and act.

We can connect with other parents and families and share experiences and resources that allow us to listen and grow.

Co-creating the Kindship app with our epic team and listening to the autistic insights from our CEO and co-founder Summer Petrosius, has been game changing as Charlie’s mum. The app allows parents of kids with disabilities a chance to connect and share from the palm of their hand.

Building our incredible community has personally brought me up for air because I have learnt first-hand about the power in knowing that you have someone in your corner. People who wholeheartedly understand. Somehow, when you aren’t forever lonely, you can breathe again and sometimes that’s all you need.

My wish is that my daughter goes into the world knowing how valuable she is and that she finds the people who support, love and empower her neurodiversity.

I dream of a world that chooses to learn from her perspective and allows her access to all the things that support her abilities, not her lack of ability.

Imagine a world that sees and values the girl behind the mask. One where she feels empowered to not wear one at all.