Real Freaking Autism

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.

7 thoughts on “Real Freaking Autism

  1. Can I safely assume the rest of the afternoon did not go well after I saw you? Oh, man. I don't know what to say. Except I'm sorry for the times that are crappy. I'm not sorry for you that you have Casey. I'm not sorry for you that you have the blessings that are a part of having him be in your life. But I AM sorry that a lot of who he really, really is is buried under autism crap. I have a variety of peripheral experience with lots of kids with autism. Obviously not like your experience, but I know from my limited view, it often seems hard to find the great kid buried under the truly taxing symptoms. Not that it's any of my business, and I don't even know if you make a habit of talking about this at all, but I've wondered what kinds of interventions you have chosen to use in Casey's situation. I've heard and read a lot about ABA therapy and floortime and different medicine regimens and casein/gluten free diets, etc…there's a lot of opinions out there as to what works and with what degree of success. Here to help, okay? Seriously.

  2. I'm glad that you are a normal mom. If you didn't complain every once in a while I would think you were abnormal. I still think you have super human powers though. Does one of those happen to be night vision because I seem to remember I have some garden flowers that need replanting… =)

  3. Sometimes you just gotta let it out! I'm glad that you can still see the blessings, but that doesn't mean you don't need to vent about the crap occasionally. Hang in there!

  4. He is a great kid. But today, I'm with you. The trials in life? Sometimes I'm not convinced they're worth it. And I would tell you that you're a great mom, but you already know that.And if you ever say that s*&* about it being your fault, I'll kick you in the face. And then I'll punch you in the stomach.

  5. Wow – Katie is kind of aggressive today. I'm sorry that Casey is hard and that he has to have such a hard disability. I am sorry that you don't live up the street from me and that I can't carry him kicking and screaming out of somewhere or at least hold Abby while you pull him off the slide in McDonald's. I feel like you are shouldering so much burden without the help of any family. I am so grateful that you have Lance. He is a marvel. I am so glad you so many good friends and such a good ward. I know that you are in good hands …. sometimes I just wish some of those hand could me mine. I love you Lexi. So very, very much.

  6. I agree with Katie…should you EVER say that again I too will punch you HARD in the face. And like Melanie I wish my hands were more than a little closer. I wish I was on Flower Meadows Street. And no you saying THIS SUCKS doesn't negate the fact that you have lots to be thankful for. It's OKAY to say things suck. It doesn't make you sound ungrateful it just makes you sound human. Take me for example. I know i have two beautiful children. I know I am blessed beyond measure. I know there are thousands of couples who never get to experience parenthood at all. but ALL of that doesn't mean that it still doesn't SUCK that we can't get another baby. Maybe I am selfish, maybe I am ungrateful, or maybe I am just a girl who wants another baby to love. So THANK YOU for letting us be human right along side you. I love you more than I could ever say or show.

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