“I don’t know how we’ve survived.” Clare Spelta’s bittersweet success story

This mother couldn’t keep her 9-to-5 job once her son started showing signs of his rare genetic condition. So she took a chance – and turned it into a business. 

Caregivers don’t, typically, have high-flying careers.Research tells usthat once you start caring for a loved one, you’re less likely to work full-time or be offered promotions. You’re more likely to reduce your working hours and experience discrimination in the workplace. And that’s if you are employed. Many carers – especially mothers – have no choice but to depart the workforce.

Such was the case for Clare Spelta, who gave notice at her marketing job when her baby son, Max, started having frequent seizures. But as Clare began grappling with Max’s condition, she was also starting what is now a very successful business. A business that, fittingly, makes everyday accessories to help us gain a bit of control over life’s chaos.

“Bon Maxiereally was built in conjunction with us going through Max’s diagnosis and finding out what everything meant,” says Clare, from her family home and business headquarters in Brisbane, Australia. “I don’t think I could have worked a normal job anymore. I’d be in tears every two seconds or I’d have to leave and go to hospital. And if you are desperate enough, you will find the solution.”

The solution for Clare was work that she could do on her own terms. She’d started a portrait-painting business in 2015, while on maternity leave with Max. But as he got more mobile, she needed to make something that could be easily replicated – and didn’t keep her at an easel for hours on end.

Bon Maxie’s first product was an earring holder, inspired by Clare’s daily scramble to find a matching pair. A simple storage solution that’s currently sitting pretty in the homes of more than 90,000 Australians.

“I have this weird, annoying habit of wanting to fix every problem,” says Clare, whose brand now boasts an abundance of thoughtfully designed, friction-free accessories. Today, Bon Maxie is one of the fastest-growing small businesses in the country.

Clare’s husband, Joseph, came on board as CFO in 2018 so the duo could both be at home and on hand to support Max, who’s now nine. Shortly after Max’s first birthday, following a series of seizures, genetic testing revealed he has SCN2A gene mutation. For Max, this has meant developmental delays, a lack of speech and several diagnoses, including epilepsy and autism.

“Don’t get me wrong, we have some really great times with Max. But as he’s growing, he’s getting stronger – and there’s a lot of physicality when it comes to caring for him,” says Clare, who welcomed her second child, Sadie, in June of 2023.

Below, Clare chats about what’s going on behind the scenes of her business, from the daily challenges of caring for her son to the difficult decision to grow their family, and the intense mix of emotions that comes with parenting her typically developing daughter.

What you have achieved with Bon Maxie is incredible. Do you think it would have taken off like it did if you hadn’t been driven by the need to make it work, so that you could be home with Max?

I started the business before Max had a diagnosis, so that is a question I ask myself a lot. Is it what it is because of the diagnosis? Did I push hard because of the diagnosis? I know I immerse myself fully into work when I’m not coping – and that’s daily. And so I’m working too much, I don’t sleep enough, but I don’t know what else to do.

There was a book my mum quoted once that said, “Your child doesn't have a disability inside the home”, and it’s true. They are just who they are at home. Max’s environment is controllable, as long as we’re here.

My husband, Joe, works with me. He was a dietitian, but we had to bring him home and into the business because I wasn’t coping. I was trying to run this business and maybe get somewhere with it, and that was the best thing that we could do for the family, because we are now a unit.

There’s enormous pressure in our life and on our family – and now on our extended family and friends, because nobody else really understands, you know? However, I’m definitely the most patient I’ve ever been. It certainly makes me more grateful for the little things that do go right. And if I get a hug from my son just once a year, that’s pretty special.

Max is so beautiful, I love him so much and I feel so much for how frustrated he must be to be in his world and not be able to just explain how he feels and thinks or what’s wrong

How would you describe your experience of motherhood this past year, since Sadie came along?

It’s intense. A lot of grief mixed with a lot of happy. It’s guilt and hope and everything rolled into one. We took such a long time to make the decision to have another child and it was a process. Now that she’s here, it’s such a different feeling. We don’t have the worry, yet. And maybe we won’t have it. There’s nothing complicated about her and we’re just lucky, in that sense.

As you say, the decision to grow your family can be hard when you’re already parenting a child with complex needs. What swayed you to try for another baby?

We had maybe a month or two of okay time with Max. His medication concoction was spot-on and he seemed to be doing okay at school. So we thought, well, maybe this isn't as bad as we thought in terms of behaviour management with him – and sleep.

For six years we didn’t have any sleep, but we’d found this happy little spot. Then I had a miscarriage. This threw me a fair bit because I was waiting for the universe to give us a break, but the universe said no.

Prior to this, we’d realised how much we needed a bigger space for Max. We were wary of neighbours hearing him scream at 2 in the morning if he got up and couldn’t communicate what he wanted. So we thought, okay, we’ll wait until we find a new place. That took three years, so once that happened, we thought, it’s now or never. I was getting older and Max was the smallest he was ever going to be. We had a ticking clock, for many reasons.

How did you feel about the prospect of having a typically developing child?

The idea of neurotypical life was actually quite scary. I keep thinking, am I going to have to deal with parents at school? Right now we don't really see other people. Max’s teachers are very honest with us and very supportive. They understand, whereas other teachers and other parents just won’t get it.

Are we going to be judged? Are we going to be outsiders from our daughter’s school environment, who people just won’t want to visit? All of that kind of stuff is really scary. But I’m also getting glimmers of, what if Sadie’s that person who helps Max grow and learn, you know?

All of the “what ifs” come up. You have to trust that things are going to go right at some point.

How has Max handled having a baby sister?

When Sadie was born, her crying was a noise that made him be like, ‘who is this and why is she here and why is she staying?’ A couple of times he’s run at her. One time Joe was holding her and she was crying, and Max just wanted to make it quiet. Both our hearts just dropped because we thought, is this what it’s going to be?

We’ve worked out safe spaces, but Max still wants to see what’s going on in every room of the house, so it’s one adult with one kid at all times. You are never relaxed. We just hope that, as she gets more robust, she’ll be able to manage and defend herself.

We really appreciate how honest you are about the challenges your family faces. When you see simplistic narratives around autism online and in the media, how does this make you feel about your experience of parenthood?

Really conflicted. Because I’m like, you do you, boo. That’s totally fine if that’s how you feel. But there was one particular line I remember a few years ago, from someone who said “Autism Awareness Week is not for parents’ sob stories”. And I thought, okay, but you don't know us. You don’t know what autism means for any other person apart from you.

Then there’s that other line that keeps coming out – “if you’ve met a person with autism, you’ve met one person with autism” – and that’s exactly it. There’s no blanket rule for anything. Max has diagnosis upon diagnosis and one of the symptoms of his condition is autism. What this meant for him, at age three, was hitting his head on our floor tiles. That was his whole day.

He has a lack of verbal skills and he still doesn't understand us very much at all. We have holes in our walls. I don’t know how many times I’ve been headbutted. I’ve been worried about broken noses. I’ve had my hair pulled every day. I got hit 20 times this morning because I wasn’t quick enough to get something that he’d requested with a picture.

This is autism, for us. So when people try to blanket explain what it is and say parents shouldn’t share their “sob stories”, that really breaks my heart.

Yes, our son is going through something, but we are going through it with him. And if I could give him the skills to speak, the skills to ask for something, the skills to not hurt himself, the skills to sleep, the skills to play, the skills to travel… I could go on and on, then in a heartbeat, I would.

Thank you, again, for sharing so honestly with us. Words like this will help a lot of parents feel seen. In the midst of caring and parenting, how do you keep your business going – and growing?

It’s great and it’s hectic. We have a remote team, mainly in Brisbane, so that means that we can work around our schedule if we have to. Like today, with Max home from school, we can have all hands on deck. We’re lucky that we’ve got a team who understands.

You mentioned earlier that sleep has been an issue for Max. What coping strategies do you rely on to get through big working days after rough nights?

Anything that happens before daylight feels 20 times worse than it is. When the new day dawns – that sounds like a song – weirdly, you forget everything that happened that night. Because the day just starts and routine sets in. You just keep going.

Coffee really doesn’t do much for me, but I like little treats throughout the day. I think you crave sugar, so you have to be mindful of that, but it does help pep your mood here and there. Honestly, I don’t know how we’ve survived. I don’t have any tips, I just think, don’t lean into the bad stuff. Try and control the bits that you can and keep pushing.

The biggest thing for us was finding medication that helps Max sleep. We went through about 12 or 13 that had the opposite effect. So if other families are struggling with sleep, a solution may be out there for you. Just keep pushing, because it’s the only hope you’ve got.

Bon Maxie is a beautiful, booming business. Do you ever take a moment to acknowledge and take pride in what you've built?

I have really conflicting feelings about that because one day I might think, yeah, cool, I’ve built this business, I’m doing what I love. But gosh, it’s impacted my health. Or is it Max’s situation that’s impacted my health, or am I just not being disciplined enough? Am I just motivated, or am I working way too hard?

I feel bad about how I am with my team – there’s always that guilt. You can’t fully explain the craziness of a morning routine every day and use that as an excuse, because people start to get tired of it. And it’s so much more catastrophic and depressing and emotional than I ever would let on, for anybody, so I'm tired of that and I'm tired of thinking about the “what ifs”.

But then other days I’m like, this is amazing, look how far we’ve come! So it’s mixed emotions. I don’t ever sit in one emotion for very long – let’s put it that way.

Follow Bon Maxie on Instagram and TikTok , or visit bonmaxie.com.au .

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