‘My 6-year-old son has a physical disability. Here are 4 things it’s taught me.'

Melanie Dimmitt is a proud mum to two gorgeous children, Arlo, six and Odette, five. 

Arlo has a physical disability called quadriplegic cerebral palsy, and before he was born, Melanie and her partner Rowan knew very little about disability. 

When Arlo was diagnosed at 6 months old, they were hugely fearful about his future. But as they connected with a community of parents also raising children with disability, and learnt more through the experience of raising Arlo, the fear began to subside. 

Since then, Melanie has been motivated to reduce the fear in other parents who are new to disability. She wrote a book titled Special, for which she interviewed dozens of parents raising kids with disability, and she hosts a podcast all about navigating the National Disability Insurance Scheme (NDIS), which funds Arlo’s therapy. Arlo's supports include his wonderful support worker Maddy, who Melanie and Rowan found through NDIS registered online platform, Hireup. 

Melanie shared with Mamamia the 4 key things having a child with a physical disability has taught her.

Image: Eamon Dimmit.

1. Disability is a natural, normal thing.

Arlo's quadriplegic cerebral palsy, in his case, means his whole body is affected. He uses a wheelchair and walking frame to get around, is non-speaking and largely communicates through his eyes, facial expressions and Augmentative and Alternative Communication (AAC) device. He gets lots of support from family, friends, and medical/care professionals who help him to lead a full and fun life. 

And his life truly is full and fun. Arlo loves a playdate with the posse of friends he’s gathered moving through his years at day care, preschool and now school. He also loves reading Julia Donaldson and Axel Scheffler picture books, is a massive fan of Disney movies with the Frozen movies and Encanto taking the top spots and he loves rocking out to loud music and musicals. 

Arlo enjoys all of the things that other kids like and do, he might just need different kinds of support to experience them. His mum Melanie told Mamamia, “Arlo has taught me that there are many ways to live a good and happy life – and walking and talking, in the traditional sense, are not crucial ingredients for this.” 

2. Try not to fear the future, and live for the moment.

All new parents worry about their children’s future, but for Melanie, who knew very little about disability when Arlo was born, the future was completely unknown. She and Rowan found themselves feeling frustrated that their only choice was to ‘wait and see’ what the future would be.  

The big lesson was to learn to live in the now.  

“Sticking to the present moment is a great strategy for remedying fears. Over the months and years, Arlo has shown us who he is and what he needs. All we needed to do, as his parents, was love him and follow his lead. 

"Also, once I started talking to other parents raising kids with disability and meeting adults with disability, I stopped obsessing over unknowns. This community is incredibly strong, creative, and important, and you’re not alone, support is there."

3. Kids are innately inclusive; your child will make friends.

Melanie shared that there are challenges with supporting Arlo's medical care, coordinating many things like various therapies, medical appointments and hospital stays. But the most difficult thing they have experienced? Other adults in their life, and their discomfort with disability. 

“The biggest challenge we face is when other people don’t take the time to ‘get’ Arlo. They see his wheelchair and feel sorry for us, rather than saying ‘hello’, sharing a smile and learning, within seconds, that this kid is like any other."

It’s not children that behave this way – it’s adults, Melanie says. From their experience through Arlo's day care, preschool and school, Arlo has had lots of caring friends, and they've seen first-hand that kids are much more open to difference. 

“Every day his school bag comes home stuffed with love notes and drawings from his friends and class, they don’t seem at all bothered by him needing different kinds of support to speak, eat and get around. 

"The parents of Arlo’s friends have done a beautiful job of including Arlo, and us, inviting us to birthday parties and playdates. I know this is often prompted by their kids insisting that Arlo is there. I think we can learn a lot from young kids in this respect."

4. Find your support.

In the early days with Arlo, Melanie and Rowan often worried about the future. At the time, they felt as if they were the only people who could properly care for and look after their son. Luckily, through Hireup, they found the solution that suited their family. 

“We met Maddy, Arlo’s support worker, through Hireup – a platform that allows you to find and hire people who not only provide the qualified support you need but also 'click' well with your kid. We sought Maddy out because Arlo needs specialised care when he’s not with us, and we both work full-time."

Maddy is an occupational therapy (OT) student in her twenties, who "would give the Energizer Bunny a run for his money!" Melanie says.

Image: Eamon Dimmit. 

"She walked in our door, went straight to Arlo and from that moment on, the pair have been unstoppable.

"Maddy has unlocked talents in Arlo that we didn’t know were there. He’s a gun at ten-pin bowling, gives a solid high-five, and holds a special place in his heart for hard rock music. Arlo goes bush-bashing, swimming and waterfall chasing with Maddy. All things that, in the grind of everyday housework and paid work, I’d struggle to muster the spark for."

Image: Eamon Dimmit. 

Maddy also seamlessly incorporates Arlo’s physio, OT and speech exercises into their play, and has found new ways for him to make himself known. Like a button that, when pressed, screams "Where’s the music!?” 

"Most importantly, Maddy got Arlo from the get-go. She never underestimates him and makes sure he’s always included – insisting he doesn’t escape those ugly bowling shoes, regardless of the fact he’s in a wheelchair. We’re better at inclusion because of Maddy. She’s shown us that there’s nothing our kid can’t do with the right support."

Hireup is Australia’s largest NDIS registered online platform. Find support that suits your needs on Hireup, including over the holidays with Hireup Holiday Helpers, to make sure you're well placed for supports in 2023.

Feature Image: Instagram/@the_special_book/@nataliehunfalvay