Finding a voice I never knew I had.

I’ve been thinking about writing this particular blog for quite some time and not because I want to tell everyone how difficult life can be as a parent of children with additional needs, and certainly not because I’m looking for sympathy. If anything, I want to talk about something that perhaps doesn’t get discussed enough.

THE UNSEEN. The things people don’t see.

When we talk about being a SEN / SEND parent, the conversation often focuses on the challenges, the physical demands, the emotional pressures and the endless juggling of responsibilities and rightly so, because there’s an awful lot that goes on behind the scenes. There’s also another side to it that I’ve found myself reflecting on recently.

The changes that happen to you as a person.

When I look back over the last eight years, I sometimes struggle to recognise the person I was before Alfie’s diagnosis and in some ways, I mean that positively.

The person I used to be

Growing up, I was a fairly quiet and reserved person. I wasn’t particularly confident and certainly wasn’t somebody who enjoyed being the centre of attention. I’d always preferred to blend into the background rather than have everyone looking at me. That was where I felt most comfortable. I think one of my saving graces was getting a job in retail when I was 16 years old.

Working with the public, meeting different people and having to communicate with complete strangers gradually helped bring me out of my shell. It didn’t happen overnight, but little by little (Oasis song will now be in your head!), my confidence grew.

Years later, my first boss would describe me as somebody who could sell ice to the Eskimos! Quite a transformation from the quiet lad who’d once been more comfortable keeping himself to himself. That doesn’t mean I suddenly became the life and soul of every party. Far from it! I just became more comfortable talking to people, expressing myself and putting myself into situations that previously might have made me uncomfortable.

For a long time, I probably thought that was as far as my personal development would go. Then, as many of you will know, in February 2018, our lives changed forever.

When life pushes you out of your comfort zone

When Alfie was diagnosed with Duchenne Muscular Dystrophy, I didn’t suddenly become a different person. I was still the same relatively ordinary bloke I’d always been. Except now I was facing something I had absolutely no experience of dealing with.

There wasn’t a handbook telling me how to cope emotionally. There wasn’t somebody sitting me down and explaining how to navigate the years ahead. We received the confirmed diagnosis over the telephone, were told we’d be referred to Manchester Children’s Hospital and were left trying to process what we’d just been told.

Looking back, I think that was the beginning of a journey that would change me in ways I could never have imagined because over the following eight years, I found myself doing things that the younger version of me would probably have run a mile from! Fundraising. Organising events. Speaking to people I’d never met. Approaching organisations. Sharing our family’s story publicly and eventually, writing (and now vlogging!) about it all.

Action4Alfie began in March 2018, just weeks after the diagnosis. At the time, it was something positive I could focus my energy on, at a point when everything else felt completely out of my control. I certainly didn’t have some grand plan for what it might become. I just wanted to do something and perhaps, without realising it, that was the beginning of me finding a confidence I never knew I had. Not because I’d suddenly discovered a burning desire to be noticed but because something had happened to my son and I wanted to do whatever I could to make a difference.

Finding my voice

When I first started writing Duch Dad, I never imagined it would become such an important part of my life. Initially, it was simply somewhere to put my thoughts. A way of trying to make sense of everything that had happened and everything we were experiencing.

I’ve never been particularly good at sitting down and having deep emotional conversations about how I’m feeling. Give me a football match, a decent song or a bit of sarcasm and I’m much more comfortable! Writing was different.

I could sit down, reflect on things and express emotions that I probably wouldn’t have been comfortable sharing face to face and in many ways, it became another saving grace. There was something quite therapeutic about getting those thoughts out of my head and onto a page.

Sometimes I’d start writing about one thing and end up somewhere completely different. A bit like this blog, initially planned as one blog that has transpired into a two parter!

Other times, I’d find myself reflecting on something that had happened weeks, months or even years earlier but more importantly, writing gave me an opportunity to be honest. Not just about the difficult moments, but about the funny ones, the unexpected ones and the little things that make family life what it is and gradually, I began to realise that sharing our experiences might help somebody else.

Another dad. Another mum. Another family who’d just received a diagnosis and were wondering how on earth they were supposed to cope. Somebody who might recognise their own thoughts in something I’d written and realise they weren’t the only person feeling that way.

That’s when writing started to become about something bigger than myself and it’s ultimately what has led me to begin developing my manuscript , The Dad You Have to Be. A manuscript I never imagined I’d write, about a life I never imagined we’d be living but one that I hope might eventually offer a little reassurance to families at a time when they need it most.

The uncomfortable world of putting yourself out there

More recently, I’ve ventured into the world of vlogging. Yes, me. The bloke who spent much of his younger life trying to avoid being the centre of attention is now recording himself talking to a camera and posting it on the internet. Who’d have thought it?

Whilst I’ve enjoyed trying something new, it’s also introduced me to something I’m particularly good at. Overthinking!

I’ll record a video, watch it back, question whether I’ve said the right things or repeatedly said ‘um’ or ‘you know’ (it’s a Northern thing!), wonder how people might interpret it and then spend far too long deciding whether to post it and that’s before I’ve started worrying about whether I’m looking at the camera properly or if I’ve managed to make myself look about ten years older than I actually am. Which, at 51, is hardly ideal!

Even after it’s been posted, those thoughts don’t necessarily disappear. Do people think I’m looking for attention? Do they think I’m making everything about myself? Am I sharing too much?

It’s strange really, because I know why I’m doing it. I want to raise awareness. I want to connect with other families. I want to encourage conversations that perhaps aren’t happening enough and ultimately, I want to help create a community that might make life a little easier for another parent facing similar circumstances.

In particular for other dads, who sometimes find it difficult to open up about how they’re feeling but knowing why you’re doing something doesn’t automatically make you comfortable doing it. Perhaps that’s one of the unseen challenges I’ve been dealing with. Trying to find the confidence to become somebody I never imagined I’d need to be.

A reflection that has stayed with me

There’s something I wrote about in one of my earliest blogs that I’ve found myself reflecting on again recently. It involved Colin Parry, whose 12-year-old son Tim was tragically killed following the IRA bombing in Warrington in 1993.

I remember seeing Colin on television over the years, speaking publicly and campaigning following the loss of his son and if I’m being completely open, I remember wondering why he seemed to be so much at the forefront of everything.

Why was he always speaking publicly? Why was he so visible? At the time, i was only 17 so I don’t think I fully understood. Of course, our circumstances are very different and I would never pretend otherwise but becoming a parent who has had to advocate for his child has given me a completely different perspective.

I now appreciate something that perhaps I couldn’t understand all those years ago.

What I once saw as somebody being constantly in the public eye, I now see very differently. I see a father who turned unimaginable tragedy into a determination to make a difference and whilst I would never compare our experiences, I can now understand why a parent might find themselves doing things that would once have been completely outside their comfort zone.

It’s not necessarily because they want people looking at them. It’s because they want people listening to what they’re trying to say.

There’s a big difference between wanting attention and wanting to make a difference.

That distinction has stayed with me and it’s something I remind myself of whenever I start questioning why I’m putting myself out there.

The positives that come from the unexpected

I don’t want any of this to suggest that the last eight years have been some wonderful journey of personal discovery. They haven’t. There have been difficult moments, changes to our family life and circumstances that I would never have chosen and there are still plenty of days when I question myself, worry about the future or wonder whether I’m doing enough.

Alongside all of that, there have been positives that I don’t think I would have experienced otherwise. Through Action4Alfie, this blog and the people we’ve met along the way, I’ve developed friendships that I genuinely treasure.

We’ve experienced the kindness and generosity of complete strangers, become part of communities we might never otherwise have discovered and made memories that will stay with us forever.

The rugby league community, in particular, has introduced us to some wonderful people who have become much more than just supporters of our fundraising. A conversation I had with Dave Cain from Super League Raw just yesterday completely turned this planned blog on its head but as alway… it was in a positive way!

I’ve found myself doing things I never thought I’d have the confidence to attempt. Speaking publicly. Contacting organisations. Approaching people I’ve never met. Sharing personal experiences with complete strangers and now, trying to get a book published and hopefully into the hands of parents following a diagnosis.

If you’d told me eight years ago that I’d be doing any of those things, I’d probably have laughed, politely made my excuses and left the room!

Yet here I am.

I’ve not suddenly become somebody who enjoys attention. I still don’t but because I’ve found something that matters more to me than the discomfort of putting myself out there. The possibility that our experiences might help somebody else. That another dad might read something I’ve written and realise he’s not alone. That another family might find a little reassurance during one of the most frightening periods of their lives or perhaps that somebody who has never experienced life as a SEN / SEND parent might begin to understand it a little better.

If sharing our story helps make any of that happen, then perhaps stepping outside my comfort zone is a price worth paying.

Still learning, eight years later

I don’t think the last eight years have necessarily made me fearless. I still worry. I still overthink. I still question myself and I certainly haven’t mastered the art of talking to a camera without wondering whether I look or sound ridiculous!

I have though learned something important. You don’t have to be naturally confident to find your voice. You can show vulnerability. You don’t have to enjoy being in the spotlight to stand up for something you believe in and you don’t have to feel strong every single day to be making a difference.

Sometimes life takes you in a direction you never expected.

It challenges everything you thought you knew about yourself and through circumstances you would never have chosen, you discover parts of yourself you didn’t know existed.

I’m still that relatively quiet bloke who would rather watch the football or listen to music. The difference is that these days, when something matters enough, I’m prepared to make a bit of noise.

Not for attention or for recognition but because I know what it’s like to feel lost, frightened and unsure of what comes next.

If I can help even one other parent feel a little less alone, then every uncomfortable moment, every bout of overthinking and every step outside my comfort zone will have been worthwhile.

Looking back, I sometimes wonder what the younger version of me would make of the person I’ve become. I’d like to think he’d be pleasantly surprised.

Although he’d probably still be wondering why on earth I’ve started filming myself talking to strangers on TikTok! In fact my younger self would’ve been filming on a Camcorder and more than likely ended up on You’ve Been Framed!

Perhaps the biggest thing I’ve learned is that finding your voice doesn’t necessarily mean becoming a completely different person. Sometimes it simply means discovering that there’s something worth speaking up for.

Sometimes the biggest changes in our lives are the ones nobody else can see.

Another side to this story…

Whilst people might see the fundraising, the blogs, the videos and the smiling family photographs, there’s an awful lot happening behind the scenes.

The appointments. The decisions. The worries. The responsibilities.

The things that don’t make it onto social media and perhaps they’re the things that have shaped me the most.

In Part Two of The Unseen, I want to talk about those experiences.

It’s not for sympathy or because I believe our challenges are more important than anybody else’s but because I think there’s a side to being a parent and carer that many people never get to see.

Sometimes, understanding what somebody is going through can make all the difference.

Thanks for reading,

Kieron x