Madelyn Milave, who lives in Minnesota, was diagnosed with spinal muscular atrophy (SMA) type 2 at 18 months old in 2005. She shares how she learned to communicate her expectations to ensure her independence with SMA.

For a long time — I mean, I still am kind of a people pleaser — and so I always had a very hard time setting boundaries. And it wasn’t, honestly, up until a couple of years ago when my parents were like, “Maddie” — like for my PCAs — “like, they work for you. Like, I know you guys are best friends, but they work for you. You don’t get to let them, you know, walk all over you.”

And so my thing is, I say it very direct. But I also, like, try to make it as nice as possible, but sometimes I’m like, “Hey, this is not OK, what you’re doing. You need to either fix it or be gone, you know?”

There’s been times where, like, a PCA will be like, “Hey, can I leave early?” And it’s not just, like, 30 minutes early, it’s like three hours early. And I’m like, “OK, like, I know I live with my parents now, but your job is to make my life as independent as possible and as if I’m not living with my parents.”

And so I was like, “If you leave three hours early, that means, realistically, if my parents weren’t here, I would be going to bed at, you know, 6 o’clock instead of 8:30 or whatever.”

So I try to say it as nicely as possible and then also have them realize what it means for me if they leave early.