I rarely get into my personal life or anything about my family for privacy reasons, theirs more than my own. Not a lot of people even know I have a little girl. We’ve been having a hard time lately, and earlier I wrote this semi-rant about what’s been going on, and posted it for my family and in-person friends. I decided to go ahead and share it here. Only my daughter’s name has been changed to her nickname:

For a week now Munchkin has been having those freak-out episodes. Sometimes they’re sparked over something she wants, and sometimes by literally nothing at all. What they all have in common is that they are beyond a tempter tantrum, and involve her thrashing to the point of causing injury (to herself or others). Bloody-murder shrill shrieking with her eyes wide so that she looks possessed, impossible to get her attention and distract her, etc. Aside from today, the shortest has been AN HOUR AND A HALF. Then I’ll be lucky if she’s calm for half an hour before we have a repeat two or three times. Cody was home today and saw one, and to lasted “only” 20 minutes. He was holding her trying to keep her from tearing about too much, and nearly dropped her.

Now the challenge we get to deal with is what to do what you know your child is high-functioning enough to know what she can and can not do when she’s calm, who goes off and has a fit that goes beyond what she can control, especially when what sparked it is her getting mad over not getting something. We refuse to let autism be an excuse. We don’t want her to learn that she can get away with things. If she does, how can we tell when she’s having a genuine episode and when she’s trying to manipulate? At the same time, what do you do when it’s a time when she can’t control herself? Let it go, and she’ll learn that she’ll be able to get away with things (after she’s finally calm, she can sometimes talk about what happened and remember details even I forgot). Try to use discipline, and we’ll be punishing her for what she can’t control. It’s a no-win situation at times, and we go with trying to discipline anyway so that she doesn’t start thinking that getting worked up and having one of these fits will get what she wants. Unfortunately consistency means doing the same when a fit is sparked over nothing. And then you feel like a shitty parent either way.

And then, because she IS high-functioning, when most people only see her when she’s behaving (who takes their kids out and about when they’re thrashing and screaming?–this stuff stays home), no one believes that it can be like this. When I say I’m exhausted from dealing with her, this is what I mean. Every sense is on high alert, making sure she doesn’t hurt anyone, trying to calm her while figuring out if there’s a way to balance what she wants with what she can have without reinforcing the idea that screaming gets what you want while trying to stop it all while trying to find that spot where you’re still acknowledging her limits. FOR HOURS ON END.

And THEN the concern that, if you take her somewhere, she might start acting up on a couple minutes’ notice so that she ends up not being welcome many places, and basically treated like she should be imprisoned at home. Yes, there HAVE been kid-friendly events where she wasn’t wanted, and no, I don’t want to talk about it.

This doesn’t even get into how you know this stuff affects her, when she knows what she wants to say and can’t and has a fit because that’s all she can figure out (for which she often apologizes after it’s all over), and you know she’s frustrated too and just doesn’t understand what’s going on, and she KNOWS she’s not understanding something because she’s very bright academically. Think of an intelligent person having a hard time grasping a fairly basic concept and getting angry and upset because ze KNOWS ze should be getting it, but just isn’t for some reason. That’s her life all the time with communication and self-control.

So you try to put on this veneer of normalcy for the world so your child isn’t made into a pariah by peoples who think that this high-functioning child is just willfully being a brat (I had one person say that if she “looked” autistic, then people would be more lenient…), while wanting to scream. All most people ever see are the good days, and they misunderstand the bad. People with completely typical kids have no reason to think their kids will have anything but a typical life. Parents like us, parents in our shoes? We can have every expectation of our children having typical lives, but there will always be that concern about whether expectations are too high, or if they’re realistic, and what will happen if things go downhill and our children end up not capable of normal lives and can’t do it on their own? We expect Munchkin to do what other kids do because we know, when she’s calm, she’s capable. But then there’s this thing inside of her that gives her challenges that we won’t use as an excuse, but that is making things a lot harder for her than it should be, and she knows it’s there, and she gets angry. And then I think that maybe it would be better for her if she was lower functioning to the point that she doesn’t know that she has limits so that she could be happier instead of angry over this too.

This shit sucks. It really fucking sucks.