I'm a proud mum to a disabled kid, but I often feel invisible

Looking back, I was borderline smug to be expecting twins in 2004. 

While mere mortals were producing one baby at a time, me and my super uterus were baking two and it wasn’t long before I was as wide as I was high!

I planned the futures of my babies, imagined their bond, their squabbles, first loves and holidays together. As my pregnancy progressed, I got more and more excited about the journey my fiancé and I were about to embark on.  

People would ask if I knew the genders, back before reveal parties were a staple part of the mum-to-be diary, and I would simply say ‘we don’t mind as long as they are both healthy.’ 

We never imagined a life where they wouldn’t be. Until that became our reality. 

Oliver and Harry were born at 32 weeks, weighing just 3lbs 9oz. While Oliver was fine, Harry had a rare congenital craniofacial condition that basically meant he was born with only half a face. We were also told that he may have brain damage and may never be able to walk.

Thankfully, over time we were able to confirm that the structure of his brain was fine and mobility wasn’t a problem.

But all my plans, dreams, hopes and innocent assumptions instantly vanished.

I no longer thought I would become the mum I dreamed I would be and any connection to the other mums around me in the ward felt lost. I had no idea what lay ahead for me or for my new family. The uncertainty and fear was worse than any worst case scenario that I could at least prepare for. 

That news changed the very fabric of the person I was. For a long time, I was consumed by guilt for a situation I was convinced I must have caused and grief for the life me and my family would never know.

As I began to find my feet on the altered path of our life, taking just one day at a time and looking for even the smallest of wins in my mindset or parenting skills, Harry was diagnosed with autism at three years old. We had to adjust again. 

Unlike Harry’s craniofacial syndrome, autism diagnoses are far more common. Recent data suggests that around 1 in 57 children is on the autism spectrum and yet dealing with the condition is still a lonely experience. 

It’s quite ironic to think about how visible families like mine are with our boisterous or ‘different’ children, and yet we can feel invisible in the parenting community. 

Harry, now 16, often tears down the aisles of supermarkets, sending old ladies flying like human bowling pins, his sole focus being on purchasing yet another musical baby toy. Then there are the meltdowns when life becomes too much and he lies down, kicking, screaming, writhing around and banging his own head repeatedly on the floor. 

The attention we receive from bystanders – drawn by his distress and my attempts to reassure him or simply keep him and those around him safe – is unavoidable. But at best, other parents swerve us. At worst, we are judged.

I do understand that it’s really difficult to know how to help in those moments, but it’s the minutes afterwards when a smile or a ‘you OK?’ would make all the difference. And yet we rarely hear it. We are alone in a crowded space. 

School holidays bring the inevitable mum get togethers, which I used to love when my boys were stationary babies. But as they grew, I found myself unable to become fully immersed in the ordinary conversations my soul craved. 

Even now, I need to have one eye on the mischief my son may be creating or the danger he could be in. I don’t get to share the ‘gossip’. I hear the laughter from the group as I follow my son like a bodyguard. I am there but I’m not. 

Then there are the parent-baby groups and school gates where other parents share their dreams, hopes and challenges with despair and humour.

As the parents of neurodiverse children, we are recognised in these spaces and given friendly waves and general enquiries, but we are rarely able to access the same conversations as so many other mums. 

Often, the issues that feel huge to them, are problems that we would be delighted to have. The challenges we struggle with are so very difficult for other parents to truly appreciate. Parents like the one I once thought I would be. 

We battle constantly with the healthcare and education systems to access assessments and diagnoses, appropriate school placements and support and even the transport arrangements to get our children to school at all.

Some parents of children with additional mobility needs can’t even use a standard disabled toilet. While campaigning for toilets with hoists, they’re changing their children as they lie on mats in the filthy floors of public toilets we wouldn’t even put a handbag on. 

Disability needs to be viewed as a difference and not an inconvenience by those with the power to impact the lives of families like mine. Accessibility and inclusion is a human right not a privilege. Yet we are still fighting, still invisible. 

Yes, autistic children are different; often noisy, unpredictable and happiest in their own company. But as mums we have so much in common; we are questioning ourselves, winging it most days and just doing the best job we can. 

For other parents like me, I say take one day at a time. Find a tribe – whether online or locally – and know that while your exhaustion is overwhelming at times, your love is stronger than anything and will carry you through to the next day. 

Our lives, despite their differences, are still wonderful ones with incredible children that teach us so much about what it means to love and be loved. 

Do you have a story you’d like to share? Get in touch by emailing [email protected] 

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