You know what? Screw it. I’m tired of pretending I’m on top of things. I’m not. Autism SUCKS. I hate it more and more everyday. I do not hate Casey. It is not his fault that he has autism (on a side not, I’m still not convinced that it’s not my fault that he has autism). He is the sweetest, most tenderhearted boy in the whole world…most of the time.
I’ve heard some parents of kids with ASD (autism spectrum disorder) say that they wouldn’t use a cure for autism if one was ever to be found. Unless their child is high functioning and just has some cute little quirks- they’re smoking crack. If there was a cure for autism but it would cost me both of my arms, I would do it in a heartbeat. I would chew them off myself.
The problem in dealing with Casey is that it’s SO HARD to separate the autism from the child. I love Casey. With my entire heart I love that boy. I hate watching him suffer because he can’t regulate the world as it comes at him. Imagine not being able to tone ANYTHING out. He really can’t. So when we all think a show at the zoo is the coolest thing, he can’t hear the speaker from the static in the microphone. Can’t see the animals beyond everyone snickering or wiggling in their seats. He can’t focus unless there’s only one thing to be focused on, which is an impossibility.
The medicine has helped SO much. Night and day difference in his noise and energy levels. He still throws tantrums a lot, but he’s basically at a 2 year old level in a lot of areas, so of course he’s throwing two year old tantrums. It would be nice to have a day without tantrums. Just one.
I wish I knew I could take him some place…any place…and know for a surety that it won’t end up with me carrying him, kicking and screaming, out of wherever we are. To me, that would be the sweetest thing.
Most of all, I feel bad for HIM. I feel bad that he’s feeling those emotions behind that tantrum. It kills my insides that he’s sad. I know that HE wants to be able to control it. I can see how frustrating it is for him to have this flood of emotions and energy and not know how to slow it down.
I wish I was a type A mom. I’m not. I’m very normal. I’m beginning to see this more and more as people out themselves as also being very normal. I’ve said it before. I’m a normal mom in an abnormal situation. I wasn’t given extra powers when Casey was given his diagnosis. (do you know what I think should be given when your child gets a diagnosis? prozac. I know very few mom’s of kids with ASD that are not on some sort of SSRI.) I know that my kids are in my home for a reason- and I’m part of that is to make me better. Probably a lot of that.
I know that I don’t know how lucky I am. It’s one of those things I know for sure. What a huge blessing it is that Casey can talk! That we found him a great special needs program right in our district. That he has teachers and paras that absolutely adore him. They see him the way I do. A great kid with a crappy freaking disorder. But I’m pretty sure me complaining once in a while doesn’t negate the fact that I have a lot to be thankful for. I do.