What I Share, What I Hold Back

On Getting Better (and Thinking More)

I am all better after my flare, it took about a week, as usual. As if on cue, Kike and the kids both came down with fevers and flu, so maybe it was simply that time where one body goes down and the rest follow. We seem to take turns like that.

With the enforced rest came thinking time. And one question kept coming back to me, one I haven’t really written about since the very start of this blog: River’s privacy.

Why I Write at All

I’ve written many times that this blog is, first and foremost, therapy for me. Writing gives me space to pause and reflect on moments that previously felt overwhelming. Moments that were impacting my physical and mental health before I had words for what was happening.

The other reason I write is connection. Reassurance. The quiet comfort of knowing and showing that someone else is having the same kind of day. That someone else doesn’t do soft play, doesn’t have playdates, buys endless coats that will never be worn.

That it’s not just you.

When the Audience Grows

Recently, I posted two short videos on Instagram. They reached far more people than I expected, and that brought an old question sharply back into focus.

I talk to Summer about being online. She learns about it at school and speaks thoughtfully about what it means. She knows I write and I ask her if she’s happy for me to talk about her or include her in videos. She can understand. She can consent.

River can’t.

What I Shared and Why

The two videos were about progress and support. One showed his new blackboard wall, a way of encouraging mark making without pressure. The other talked about his hyperlexia. Something we didn’t even have a name for until we researched it ourselves, trying to understand what we were seeing in front of us.

I’m part of several online autism communities and they are full of the same questions:
My child does this, do you think they’re autistic?

Everyone is searching. For patterns. For reassurance. For someone to say you’re not imagining it.

I follow people online too and I’m honest enough to say that seeing other children, their videos, their photos, their parents’ reflections was one of the first things that made me pause and think: This might be River.

Without that visibility, would I have recognised the signs as early as I did?

The Question I Can’t Answer Yet

I can’t know how River will feel about this when he’s older. I can’t answer that now.

What I can say is what I choose not to do. I don’t film or photograph him in distress. I don’t share moments that would humiliate or expose him. I don’t write about him to entertain or perform vulnerability.

I write about me. My reactions. My fears. My learning curve. About how, as a family, we are navigating a world that suddenly works very differently to how we once imagined.

Walking the Line

I hold this tension all the time, between privacy and visibility, protection and advocacy, silence and sharing. I don’t think there is a perfect answer. I think there is only care, intention and the willingness to keep questioning yourself.

For now, this feels like the right balance.

And if that ever changes, I’ll listen.