Nobody tells you about the good bits. When Kya was diagnosed, every leaflet, every website, every well-meaning relative – they all talked about challenges. Struggles. Things that would be “harder now.” But nobody mentioned the doors that were about to swing open. And honestly? Some of those doors have changed our lives.
The first one was DLA – Disability Living Allowance. I’ll be straight with you: I nearly didn’t apply. The word “disability” sat funny with me at first. Kya wasn’t “disabled” in the way I’d always pictured it. But a parent in our support group said something that stuck: “It’s not about what she can’t do. It’s about the extra support she needs to do it.” That reframed everything.
The form was brutal, mind. Thirty-odd pages of explaining your child’s worst days in the most clinical language possible. I sat at the kitchen table one evening and cried halfway through it – not because Kya’s life is sad, but because having to write it all down like that makes it sound sad. It doesn’t capture the laughter, the cuddles, the way she hums to herself when she’s content. It just captures the hard parts. But we filled it in, sent it off, and waited.
When it came through – approved – things started to shift. Not dramatically. Quietly. The kind of shift where you suddenly realise you can breathe a little easier.
First thing we noticed: discounts. Loads of them. Kya gets free or reduced entry to most zoos, wildlife parks, and family attractions. Her carer goes free too. That might sound small, but when a family day out used to cost sixty-odd quid before you’d even bought a sandwich, it’s massive. We started going to places we’d always fancied but couldn’t quite justify. The zoo became our regular Saturday thing. Kya adores the wallabies – she’ll stand at that glass for an hour, completely still, watching them dart about underwater. Best £0 we ever spent.
Then came Carer’s Allowance. Another thing I nearly didn’t apply for because I thought “carer” meant someone in a uniform. It doesn’t. It means the person who’s up at three in the morning because their child can’t settle. The person who plans every outing around sensory needs, safe foods, and exit routes. The person who carries ear defenders, a change of clothes, and three backup snacks in a bag that weighs more than the child. That’s a carer. That’s us.
The money isn’t life-changing in itself – it’s not a fortune. But it’s recognition. It says: what you do is real, it matters, and here’s a little help. And sometimes, just being acknowledged is worth more than the amount.
Nobody mentioned the doors that were about to swing open. And honestly? Some of those doors have changed our lives.
What I wish someone had told us from the start is this: a diagnosis isn’t just a piece of paper with a label on it. It’s a key ring. And every key on it opens something – support, understanding, access, community. You don’t have to use them all at once. But knowing they’re there? That changes everything.
Last weekend, Kya and I spent two hours at the wildlife park. She watched the otters. I watched her. We shared a bag of chips. Total cost: about three quid. Total value: absolutely priceless.
Share this story