School holidays are hard for most parents, but when you're raising a child with complex disabilities, they can be unbearable. There's no real break, no time to recharge, and rarely a moment when you're not needed. It's weeks of managing anxiety, sensory challenges, emotional dysregulation and constant supervision, often with very little support. So when school finally goes back, returning to work can feel like an enormous weight has been lifted. For a few hours, you get to reclaim a small piece of yourself.
Today was supposed to be that day for me. After two exhausting weeks, I was finally back at work, feeling like myself again. Instead, by 1pm, I was sitting on the grass outside my home, sobbing into my hands.
I'm a single mother in South Australia raising my seven-year-old son, Joshua, who is autistic, has ADHD, sensory processing disorder and significant additional needs. I've recently stepped back from a career I've spent decades building, taking a part-time role because working full-time while caring for him has become almost impossible.
Today, the school called. Joshua had a rash across his chest and back. I'd already noticed it, but it was getting worse and he was incredibly itchy. With recent changes to his medication, I panicked. Was it an allergic reaction? Was it serious? Did he need to go to hospital? And why the hell, as his mother, did I have absolutely no idea what to do?
Can we please stop assuming all autistic children are the same?
Something that makes me increasingly angry is how little people understand about sensory processing disorder. We hear the same generalisations constantly. Autistic children don't like being touched. They don't like loud noises. They don't like certain textures. But which autistic children? Some actively seek touch, others avoid it. Some barely register pain, while others experience the smallest sensation as unbearable.
When Joshua gets the tiniest scratch or mark on his leg, he sometimes cannot tolerate having a bath for five days. Five days because of something most people wouldn't even notice. For him, water touching that tiny mark can be unbearable. For me, it means days of negotiating, reassuring, finding alternative ways to wash him, worrying about hygiene and desperately trying to avoid another episode of distress. Something as ordinary as bathing becomes an enormous emotional undertaking. And it's heartbreaking because he's not being difficult. He's genuinely struggling.
Then there's interoception, something I didn't even understand until a few weeks ago. I'm an intelligent, educated woman who has spent years learning about autism, yet nobody had properly explained this to me. Interoception is our ability to recognise and interpret signals from inside our bodies, including hunger, thirst, pain, nausea and discomfort. For some autistic children, these signals can be difficult to recognise or communicate.
Imagine being unable to explain what feels wrong inside your body. Now imagine being the mother trying to determine whether your child is having a potentially serious reaction to medication.
How are parents supposed to recognise something dangerous when nobody has properly educated us about how differently our children might experience and communicate physical symptoms?
Our healthcare system is flawed
Today, I felt as though I called seventeen different numbers trying to understand whether Joshua's rash was related to his medication. One of those calls was to Healthdirect, our national, government-funded health information and advice service. Surely this was exactly the kind of service a frightened parent should be able to turn to?
Apparently not.
I spoke to a nurse who told me they couldn't assess Joshua because he wasn't physically with me. He was at school. I was at work. And that was effectively where the assistance ended. No meaningful guidance, no clear explanation of the medication reactions I was concerned about, and no practical direction. I was furious.
Here's the irony. If my autistic son had been sitting beside me, making that telephone call could have been almost impossible. His anxiety, communication difficulties and need for my undivided attention mean even a simple phone conversation can become extraordinarily challenging.
I understand that clinicians need appropriate information to assess patients safely. But surely a national health advice service should be able to provide parents with guidance, explain warning signs and identify appropriate next steps, even when their children aren't physically present.
What I desperately needed someone to explain was the difference between anaphylaxis and other medication reactions.
Joshua had developed a mild, itchy, pimple-like rash that had been there for at least five days, possibly longer. It wasn't hives, those raised, itchy welts people commonly associate with allergic reactions. Anaphylaxis typically develops rapidly and can involve life-threatening breathing or circulation problems, with or without hives. But medication reactions can also develop days or even weeks after treatment begins. Many are not life-threatening, although some delayed reactions can be serious.
Why isn't this explained clearly when medications are prescribed? Why are parents left trying to work out what's dangerous, what's manageable and what requires urgent assessment while they're already terrified for their child?
I'm not asking someone to diagnose my son over the telephone. I'm asking for a healthcare system that understands disability and provides meaningful guidance to the families who need it most.
The cruel irony of a medication that could change our lives
And perhaps the most heartbreaking part is that I suspect Joshua's rash may be related to risperidone. It isn't confirmed, but it's a possibility we now need to investigate.
For families like ours, medication can represent hope. Hope that our children might feel calmer, experience less distress and find everyday life a little easier. Hope that the constant anxiety and emotional challenges might become more manageable.
For me, risperidone represented the possibility of getting some of our lives back. More stability for Joshua. More breathing room for me. Perhaps even the chance to build a sustainable balance between motherhood and the career I've worked so hard for.
The cruel irony is that the one medication I hoped might save my life, in the sense of making our daily lives manageable again, could be the very thing causing my son discomfort.
Of course, I would never want Joshua to suffer for my life to become easier. I want him to feel better. I want us both to feel better. And the possibility that something which offered us hope might not be suitable for him is devastating.
Five minutes of kindness
After hours of confusion, the most beautiful support I received came from a pharmacist at a pharmacy just up the road. Someone who understood the medications Joshua was taking, listened carefully and gave me clear, practical advice within five minutes.
Five minutes.
A local pharmacist provided me with more useful guidance than the nurse I spoke to through Healthdirect. Not because nurses aren't important, but because this pharmacist gave me something I had desperately needed all morning: knowledge, compassion and the feeling that someone was actually listening.
To that pharmacist, you know who you are. You changed my life today, and I will always be thankful for your advice and kindness. You probably have no idea what those five minutes meant to me.
This was never just about a rash
When I finally got home, I cried. Not just because Joshua had a rash, but because sometimes the weight of being responsible for absolutely everything becomes unbearable.
It's the medications, the appointments, the school calls, the therapies, the sensory challenges, the financial pressure and the constant fear of getting something wrong. It's stepping back from a career you've worked your entire adult life to build, only to discover there still aren't enough hours in the day. It's loving your child more than anything in this world while quietly grieving the parts of yourself you've had to put aside.
And it's the loneliness of having to make every decision, manage every crisis and somehow keep functioning when you're completely exhausted.
We need better education about autism, sensory processing, interoception and medication reactions. We need healthcare systems that understand the realities of disability. And we need to stop assuming that because a mother appears capable, educated and professionally successful, she's coping.
Today, I was supposed to be celebrating getting a little piece of myself back. Instead, I was sitting alone on the grass, crying into my hands, wondering why something as seemingly simple as a rash had become so extraordinarily difficult.
Tomorrow, I'll get up and do it all again, because Joshua needs me, and I love him beyond words.
But today, I needed someone to look after me for five minutes. And it breaks my heart that finding those five minutes of support was so incredibly hard.
