A different childhood

Good morning, good afternoon, or good evening – whatever time you find yourself here. 😊

For me, it's morning. I've just finished my first cup of coffee… one of many that will get me through the day.

Today, I wanted to write about something I struggle with every single day: the feeling that your child is missing out on parts of childhood. It's a difficult topic, but I wanted to share both the feelings I have and how I try to cope with them—whether that's the right way or not.

So, let's start with the feelings.

I absolutely adored my childhood. If you think back to your own favourite memories, what feelings do they bring? What are those memories?

For me, I remember calling for friends, playing out in the street, creating our own games, forming friendships that have lasted a lifetime, making daisy chains, playing handstands and competitions, rounders, Bulldog (Red Rover), riding my bike, rollerblading, walking to the shop to spend my pocket money on pick 'n' mix...

If I rewind to when I was around my son's age—five years old—I remember watching Disney films and feeling every emotion they brought. I remember crafts, family days out to theme parks, even simple trips to the Metrocentre and Metroland. Birthday parties, sports days, school plays, learning about the seasons and enjoying everything each one brought. Halloween, Christmas, Easter, the excitement of breaking up for the summer holidays and going away on family holidays.

I adored my childhood. I'd go back in a heartbeat. It shaped who I am today, and I think many people would probably say the same. I know how fortunate I was.

When you're planning a family, and especially when you're pregnant, this is the childhood you imagine for your own child. You dream of reliving those magical moments through them—showing them everything the world has to offer, watching them grow, flourish, and create memories you'll treasure forever.

Now, I'm not saying autistic children can't experience these things. Many children on the spectrum absolutely do, and more.

But for my son, things look different.

He is completely non-verbal and has high care needs. Life looks very different for us right now, and so has his childhood.

He's never sat and watched a full movie because he simply prefers to rewind the same few seconds of Peppa Pig over and over again. He doesn't have friends he gets excited to see. He goes to school, but he doesn't follow the same curriculum as his peers, and for parts of the day he is taught separately. This is necessary for both his own regulation and the learning of the other children.

He can't yet take part in school nativities. He didn't join in at nursery either.

I want to talk about the nativities a little more because I don't think simply mentioning them does justice to the feelings many SEND parents experience.

I remember Tommy's first opportunity to be part of a nursery nativity. Looking back, it was one of the first really deep wounds on this journey.

He was three years old.

I remember dropping him off that morning. Parents were queuing outside, each walking in with their children as they reached the front of the line. I had absolutely no idea what was happening, so when it was my turn, I asked.

I'll never forget the look on the staff's faces when they realised I hadn't been told.

"Oh... did nobody let you know? It's our nativity today. Tommy wouldn't cooperate, so he isn't in it. We're just going to take him into the garden to play."

They smiled kindly, but then gently ushered me aside so the other parents could go in.

I stood there and watched through the window as they walked Tommy straight past everyone else and out into the garden.

It stung.

I got into my car and cried.

I wasn't even aware the nativity was taking place. I hadn't been invited. Nobody had asked for my input or prepared me for that moment. I was completely caught off guard.

Even now, years later, I still think about it.

For me, it felt like a glimpse into what our future might look like, and I realised very quickly that I would need to become stronger. I would have to learn how to advocate for my son in ways I'd never imagined.

So I suppose what I'm trying to say is this...

When your child receives an autism diagnosis, especially alongside developmental delay, you're often not grieving the diagnosis itself.

You're grieving the childhood milestones that suddenly feel uncertain.

The moments that flash through your mind; the ones you've imagined since before they were born. The milestones happening all around you. The ones currently passing by. And the future ones you wonder whether you'll ever experience.

Before anyone reads this and thinks, "This is all so negative," yes... it is.

Because this is my outlet.

This is where I leave these feelings.

I put them onto paper so they don't stay bottled up inside me.

Then I carry on living my life with my beautiful little boy. I immerse myself in his world—a world that is beautiful in its own unique way.

But when I step back into my world... the world that he finds so difficult to be part of...

Of course it makes me sad.

And that's okay.

In my next blog, I'll be writing about "The Power of No", where I'll talk about why, for an entire year, we said no to certain events, and how that decision changed everything for our family.

Thank you so much for reading.

Love,

Diane xoxoxo