It’s a hot August Thursday and I’ve taken the day off work for my baby boy’s first birthday. But right now he’s at home and I’m in hospital, where my six-year-old daughter Beatrix is having lengths of plaster woven around her legs.

A couple of weeks earlier, she’d undergone major hip surgery and was now encased in a double cast from waist to shin while her deliberately broken and reset thigh bone healed. Yesterday, the cast developed a crack. Now, four healthcare professionals were holding her by her ankles and mummy-wrapping her to reinforce it while I tried to distract her.

While some parents might have been devastated by this timing, in one way, I was relieved. Bea has a rare genetic condition called Kabuki Syndrome, which means she has both physical and cognitive disabilities, special educational needs (SEN) and is under the care of 10 medical specialists for her various issues. The less work time her medical needs eat into, the better. Even if, as in this case, it means compromises for the rest of the family: Bea’s dad, her four-year-old sister Felicity, and now one-year-old brother Caspar (who, to be fair, didn’t seem to mind that his cake was hastily bought from Lidl en route home, rather than lovingly homemade).

Every working mother understands the conflicting demands of work and parenting. But as a mother of a disabled child, I contend with a largely unseen but additional, equally all-consuming, third element: care. 

It’s little wonder to me that only 3% of UK women with a disabled child are also in full-time work. I first read that stat in Joeli Brearley’s 2021 book Pregnant Then Screwed: The Motherhood Penalty And How To Fix It and it’s been on my mind ever since. Where are we all, I wondered? I couldn’t find stories of other women having to ghost on work calls to speak to doctors they know by name, or who cruise into Monday morning meetings with relief after a relentless weekend of managing meltdowns and care-related paperwork. And so my podcast, The SEN Mums’ Career Club, was born.

There are thousands of women in my position. Some are indeed in full-time work. Some manage full-on careers on reduced hours, or are self-employed so they have the flexibility required to manage the care of a child with complex or additional needs. Legal marketer Helen Burness returned home from her 40th birthday party in the early hours only to have to dash her daughter Marigold straight to hospital. Lizzy Parsons, a former civil servant, had a court battle to get her daughter Melodee into a school suitable for her needs. Kate Blackmore, an ear, nose and throat (ENT) surgeon, performs the exact operations on other children that her daughter Emma has required.

I’ve worked in the media for almost 20 years, originally writing for women’s fashion magazines (which is ironic, now I barely have chance to get myself dressed in the morning), and my speciality is knowing great content and finding its audience. I knew these women were out there, like me, with nowhere to hear their very specific experience of parenting reflected back to them. As a collective, we keep quiet. Most women worry that having children will negatively affect their career, and there’s endless data that proves they are right to do so. If your child needed an exceptional level of care, involving countless medical appointments, treatments and ongoing therapies, is it any wonder that, in a professional context, you’d be more likely than not to keep the mind-boggling logistics of that to yourself?

The feedback I’ve had on season one of the The SEN Mums’ Career Club has been overwhelmingly positive. Barely a day goes by that I don’t receive a message from someone thanking me for making the podcast. Saying that they feel seen for the first time. That nothing had resonated with them quite like it before. That it had made them cry. After just a couple of weeks of release, we went into the Top 20 of the Apple iTunes Parenting podcast charts. That was a particularly proud moment for me.

While I know these stories resonate with other parent-carers, I’d like to think that they have a value beyond our community too – for friends, family, colleagues and allies to better understand the experience, and for employers to get greater visibility on the challenges of their workers.

Many of these challenges are unique to individual families. The ones we face with Bea range from the big, like her recent hip surgery and getting used to a wheelchair (that we had to source and buy ourselves), to the small: she’s not great with cutlery, so mealtimes typically end in a lot of frustration and mess. But some are universal to parents of children with additional needs – like the ceaseless time-suck of appointments and admin, and the cruel paradox that making money is harder yet more important than ever, because you worry that your child will depend on you forever, not just until they turn 18. 

Of course, it’s not all bad. One of my favourite moments in the series is when teacher Charlie Beswick reels off a list of the transferable skills parent-carers bring to the workplace – among them tenacity, the ability to read between the lines and being able to pivot quickly. We are strategists and problem-solvers. My propensity to cope in difficult situations is 10 times what it used to be. I am grateful for the respite work gives me and in return for that, I always endeavour to bring my A-game.

The SEN Mums’ Career Club is deeply personal. In part, it’s therapy for me: 80% self and career and 20% a love letter not just to Bea, but all our children. And not only those with additional needs either, but also their siblings – young carers whose ‘normal’ lives are significantly impacted by disability too.

Kabuki Syndrome affects Bea in all sorts of ways, but it is part of her, along with so many other traits. She’s wilful and impatient. She’s beautiful, with tumbling curls and big blue eyes. She’s funny: recently, she went through a phase of secretly taking off one shoe and sock on the school bus on the way home, for no other reason than she thought it was hilarious when it was time to offload her and her mischief was discovered. She enjoys swimming and going to Rainbows. She adores books.

Bea might not look or sound or play or move like other children, but she’s a complete human being. She’s perfectly who she’s supposed to be. One of the hardest parts of her disability, for me, is that her whole life, there will be people who think that she is less-than. She is not. Her life is as valid as anyone else’s. The space she takes up is hers to own.

As her mum, so is mine. It feels cathartic to have found my voice in this strange new landscape and created a platform that can effect change for other women. Even if, for now, that’s just helping them feel less alone. 

Images: Getty/Leisa Millar