Still on Her Toes

We’ve done the stretches. We’ve done the orthotics. We’ve done the PT, the reminders, the corrections, the custom shoes, and the watching. So much watching. Since she was five years old, we’ve been trying to pull her heels down to the ground. And now, at twenty-one, we’re still in it. Still toe walking. Still fighting tendonitis and collapsing arches. Still getting handed referrals for physical therapy and new orthotics, like we haven’t been on that exact ride for sixteen straight years.

Here’s the thing: toe walking isn’t just a habit you break. For some kids, especially autistic ones, it’s a deeply embedded strategy. It’s sensory. It’s regulation. It’s movement. And for my daughter, it’s just… her. Yes, it can cause pain. Yes, we will keep doing everything we can to protect her tendons, her joints, her body. But let’s stop pretending this is something that can be fully fixed. We’ve tried. We’re still trying. And at some point, you have to stop fighting her to win some war with her feet.

We remind her when we see it. She corrects it for a moment. And then her body pulls her back onto her tiptoes. To the safety. To the pattern. To the way she’s always moved through the world.

The Part No One Wants to Talk About: Surgery Someday

She’s not close to surgery. Let me say that again for the people in the back: She is not on the table. But if she doesn’t stay consistent with therapy… If the inflammation gets worse… If the damage from years of toe walking catches up faster than we can manage… Then yes, one day, that may be the next step. Not tomorrow. Not next month. But someday. If we don’t stay ahead of it.

This is what no one tells you when your five-year-old starts toe walking: That sixteen years later, you’ll still be trying to keep up with a body that never really stopped doing it. That “just stretch her calves” turns into “get new orthotics again” turns into “watch for signs of tendon breakdown” turns into “we’re trying to avoid surgery.” It’s not a threat. It’s not a failure. It’s just the honest truth of where long-term toe walking can lead if you don’t stay on top of it.

So we stretch. We strengthen. We support. We remind. We do it all, again and again and again. Because we want her to stay on her toes metaphorically, not physically, for as long as possible.

If you’ve never lived in a body that feels like it’s made of electricity… If you’ve never walked through a store trying to tune out four hundred lightbulbs and someone chewing gum three aisles over… If you’ve never had to figure out how to exist in a world that overwhelms you just by being… Then don’t tell me toe walking is just a phase we missed fixing.

She will still walk every day and do her PT. She’ll still get the new orthotics. She’ll still stretch the calves and rebuild the strength that falters. And we’ll keep listening to her, to her body, to the patterns she’s spent a lifetime building. Because we’re not just treating her feet. We’re walking beside her for life. And if that means she stays on her toes a little longer than the world thinks is ideal, so be it. As long as she stays moving forward, we’ll call it a win.