GD+SN=?????????

I think a lot about how special needs parenting forces us to give up so many of my "crunchy" ideals. And I'm wondering, now, if gentle discipline is one of those things we have to give up.

VeeGee has GERD and has thrown up pretty much constantly since she was born until she had a nissen fundo in January. Thankfully that ended the vomiting. And, for the first time, we can see inside of her mouth without her completely clenching her teeth. I know it might seem ridiculous, but we've just never been able to fight her hard enough to be able to see inside her mouth without her throwing up. But now we can.

Anyhow, we've discovered that her teeth are almost black - likely from the acid and the "neglect" and the massive amounts of antibiotics. SO, we've decided to start brushing them. And you'd think we were torturing her.

I'm used to torturing her, to her screaming in pain or agony or fury. I HAVE to do horrible things like give her breathing treatments, change her trach (until last month), clean/rotate her mickey button, oh, and change her diaper. I have to hold her down, probably hurting her, when nurses change her IVs, take her blood pressure, her temperature, her ears.

And now I'm wondering just what she understands. How much am I supposed to hold her accountable (I don't even know if that's the right word) for her occasional hitting, throwing and other 'misbehaviors' - mostly mild, really? Her therapists complain about compliance, and I just don't know how much more I can push her.

How do you establish boundaries, 'rules' or whatever when you're not completely sure that your little one understands? How do you cope with people who think you spoil your child because they aren't always 'following instructions' or whatever?