WELLBEING

The gamechanging app for parents of children with disabilities

23 October, 2023 . 0

Raising a child with autism led Sandy Golder to help create the Kindship social networking app that connects and supports parents of kids with a disability.

After Sandy Golder’s daughter was diagnosed with autism, she was determined to use her experience to support other parents facing despair and loneliness.

Imogen (Immy) Golder is 12 years old and in the words of mum Sandy, “fiercely independent, sassy, kind, funny and fascinated with becoming a teenager”.

Immy is also autistic and can’t leave the home she shares with Sandy, dad Richard and big brother Cooper to do simple things, like go to the park, without two people to care for her.

“Immy has quite dangerous behaviours in the community – she has meltdowns, runs into traffic; she’s very unpredictable,” Sandy says.

“We started to see those sorts of behaviours from when she was about four years old.

“Parents of autistic children will know the feeling when your child is starting to lose control – every sense gets heightened and you’re completely on edge, as you step into a zone where you have zero control.

“If I’m in that zone when we’re out in public, I can feel the eyes of all the people around me, burning their judgment into the back of my head because they don’t understand.

“It’s hard enough that you can’t do the things that other families do, but dealing with people’s thoughts around your child leaves you feeling incredibly alone.”

How the Kindship support network started

Three months before Immy’s diagnosis, Sandy herself was diagnosed with multiple sclerosis, or MS, a chronic disease that affects the brain and spinal cord.

But rather than wallowing, the gritty mum launched into action, determined to find a connection with like-minded parents who could understand her family’s journey.

“Finding a connection with people who would support and accept us without judgment soon became my passion point,” she says.

How the Kindship app helps parents of children with disability

Fast forward to World Autism Awareness Day in 2022 and Sandy, along with three other mums – Summer Petrosius, Stephanie Wicks and Tara Thompson – launched Kindship, the first social networking app built exclusively for parents raising children with a disability in Australia.

Described as a safe, private and kind space for parents to connect and learn from each other and to step out of the shadows of shame and judgment of people “who just don’t get it”, the app is run by the four founders and other parents of children with disabilities.

“Research shows that carers are almost twice as likely to be under-employed than other Australians because of the time it takes to look after someone with a disability, inflexible working conditions and lack of understanding from employers,” Sandy says.

“That’s on top of the higher rates of social isolation, depression and illness.

“We’re passionate about creating flexible employment opportunities for these carers, because who better to guide other parents than those with lived experience?”

The Kindship app empowers parents

The Kindship team recently raised more than $1 million via the equity crowdfunding platform Birchal to launch their National Disability Insurance Scheme (NDIS) budget management tool for the app’s 2000-plus users.

“The Kindship Wallet uses AI (artificial intelligence) to help families better budget, track and manage their child’s NDIS funding, because we know the demand for disability-related support and services often exceeds what’s immediately available and it’s tricky to navigate,” Sandy says.

“Families often feel overwhelmed with the amount of communication they have to engage in with their service providers and the NDIS, contributing to the distress and difficulties they’re already experiencing in navigating their child’s diagnosis.

“We want to empower parents to make the most out of their NDIS experience by providing a library of templates combined with coaching from parents with lived experience to make that communication easier.

“The whole theme of everything we are doing with Kindship is about supporting and empowering parents and families so they feel respected and valued.”

Tips to help you feel supported

Make sure you connect with people who “get it”. You think you’re the only one, but there are people out there who understand.
The lived experience and expertise of other parents who have been through the same thing is the best advice you will get.
When looking for services that are the right fit for your family, remember you’re the customer and the expert in your child, and you have the right to choose what suits your family best.

Ways to use the Kindship app

Kindship doesn’t just provide support and information, there’s also a face-to-face aspect, with group meet-ups organised through the app and the Kindship network.

Kindship is available to download for free in Australia.

More parenting support:

Written by Liz McGrath.