I need to tell you about the fingernails. Because if you’re an autism parent, you already know. And if you’re not, you’re about to find out that cutting a child’s nails can become an actual military operation.
Kya will not – absolutely, categorically, under no circumstances – let anyone cut her fingernails while she’s awake. Not me. Not Sarah. Not a nurse. Not anyone. The sight of nail clippers sends her into a panic. The sound of the clip is unbearable. The sensation of something pressing against her nail – that tiny squeeze before the cut – is, as far as Kya is concerned, one of the worst things the world has ever invented.
So we don’t even try anymore. Not during the day. During the day, the nail clippers don’t exist. We hide them like contraband. If Kya ever spotted them on the side, the trust would be gone for weeks.
Instead, we wait. We wait until the dead of night. Until she’s properly asleep – not just dozing, not just quiet, but deep, heavy, completely-out-of-it asleep. And then the operation begins.
Picture the scene. It’s half one in the morning. The house is dark. Sarah and I are standing outside Kya’s bedroom door like two burglars casing a job. I’ve got the nail clippers. Sarah’s got the phone torch on the dimmest setting. We look at each other. We nod. We go in.
The door has to open slowly. Not because it squeaks – we fixed that years ago, WD-40 on every hinge in the house – but because any change in the air, any shift in the light from the landing, any tiny disturbance can be enough. Kya sleeps like a cat. She’s not a deep sleeper who you could hoover around. She’s the kind who can sense a presence in the room before you’ve taken a step.
So I crawl. I literally get on my hands and knees and crawl across her bedroom floor in the dark, nail clippers in my teeth like some kind of commando, inching toward the bed. Sarah stays by the door, holding the light at an angle that’s just enough to see but not enough to wake her. We have done this so many times we could do it blindfolded. We practically do.
I reach the bed. Her hand is usually tucked under the pillow or curled against her cheek. The first job is to gently – gently – ease her hand out without waking her. This alone can take five minutes. You move a finger at a time. You hold your breath. You become so still that your own heartbeat sounds like a drum.
Then you clip. One nail. Just one. And you freeze.
Because sometimes she stirs. Sometimes the clip is just loud enough, or the tiny vibration through her finger is just noticeable enough, and she shifts in her sleep. Her hand twitches. Her head turns. And I duck. I actually duck down below the mattress like I’m hiding from a searchlight. A grown man, crouched on the floor of his daughter’s bedroom at two in the morning, holding nail clippers, not breathing, waiting for the all-clear.
Sarah, still at the door, does the silent thumbs-up when Kya settles again. I surface. I go for nail number two.
On a good night, we get all ten. On an average night, we get six or seven before she stirs too much and we have to abort. On a bad night, we get two, maybe three, and retreat – which means we’re back tomorrow night for the rest. I’ve never done anything in my life that requires this level of patience, precision, and sheer nerve. I’d be brilliant at bomb disposal.
If someone had told me before I became a parent that I’d be commando-crawling across a bedroom floor at 2am to cut fingernails, I’d have laughed. I’m not laughing. I’m crouching.
Now, here’s the bit that gets serious for a moment. Some people – and I mean well-meaning people, professionals even – have told us we shouldn’t do this. That cutting her nails while she’s asleep is doing something to her body without her consent. That it goes against her rights. And I understand that argument. I do. Consent matters. Bodily autonomy matters. Especially for disabled children, who already have so many decisions made for them.
But here’s the reality. If we don’t cut Kya’s nails, they grow. And they grow fast. And within a week they’re sharp. Within two weeks they’re long enough to scratch, to cut, to draw blood. She’s scratched herself. She’s scratched us. She’s scratched her teachers. Not out of aggression – Kya doesn’t have a violent bone in her body – but because when your nails are like little blades and you flap your hands and grab at things and don’t understand personal space, people get hurt. She gets hurt.
So what’s the alternative? Leave them? Let them become a danger to her and everyone around her? Hold her down while she’s awake and screaming? That feels like a far bigger violation than quietly clipping them while she sleeps peacefully and never knows it happened. We chose the option that causes her zero distress. Zero. She wakes up in the morning with shorter nails and no memory of how they got that way. As far as she’s concerned, the nail fairy visited.
I won’t apologise for it. We’re keeping her safe. We’re keeping everyone around her safe. And we’re doing it in the way that respects her the most – the way that doesn’t scare her, doesn’t hurt her, doesn’t force her. If that means I have to leopard-crawl across a dark bedroom twice a month with clippers in my teeth, then that’s exactly what I’ll do.
The toenails, by the way, are worse. The toenails require a whole separate strategy involving carefully peeling back the duvet one centimetre at a time, which I won’t go into because it makes the fingernail operation look like a walk in the park. We’ve considered giving it a code name. Operation Little Piggies is the current front-runner.
Last week I managed all ten fingers and both big toes in a single session. Fourteen minutes. No stirs. Clean getaway. I came back to bed and Sarah held up both hands for a silent double high-five.
Some victories are small. Some victories happen at two in the morning and nobody will ever know about them except the two exhausted parents grinning at each other in the dark.
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