There was this huge uproar in the autism community because one parent said that “autism sucks.” Apparently it had offended adults who have autism. They see their autism as being a part of them, and so when someone says it “sucks” they can’t help but feel like they are saying that people with autism suck. I’m oversimplifying this, I know. I read all of the posts, the back and forth. I learned a lot.A lot of these people with autism think that it’s not right to want to cure it.
But it’s different for parents of kids with autism and people who have autism themselves. We don’t see eye to eye because as parents, we just can’t, unless we are on the spectrum ourselves. I WISH I could see the world through Casey’s eyes. I WISH I could get it. I get glimpses every once in a while. And it’s not enough. I’m sorry for that. I know that a lot of people with autism say it’s wrong to want to cure a part of them that makes them really truly who they are.
They say that it’s selfish to wish that we could “cure” our kids. And you know what? They’re right. I don’t care, either. Casey might live a long, blissful life without any understanding of the disorder I wish so badly he didn’t have. Casey will be happy. I will work my ass off to make sure of that. Casey will be loved. So if he has all of those things, all the things that any person wants, why want to cure him?
Because I’m selfish.
Because I want to be able to go on dates and vacations with my husband without worrying that he’s going to really freak out. Because I want to be able to take my children places without worrying that bad shit is going to happen. Because I want to not be so heartbroken every time I hear about a birthday party Casey wasn’t invited to (most of them). Because I don’t want to feel bad when a parent forces their child to invite my son to a party that they don’t really want him at. It’s not fair to them either. Because I want Carter to not have had to grow up so damn fast to deal with the stress in our home. Because I didn’t want to have to grow up so damn fast. I’m turning thirty here in a couple of months and I have more grey hairs than both of my older sisters combined.
Because I’m tired. I’m so tired.
I want a cure because I’m so ….ing sick of needing to explain that I ADORE my son, autism and all. Like for some reason if I say that I hate his autism, people think that I hate him. I don’t. They are two very separate things. I’m sick of offending people when I say that I’d give both my arms for a cure. Because I don’t mean offense. I mean that I’m not working so damn hard to get Casey the best services, the best care, etc, for nothing. Because I want BETTER for him.
Does it mean that there will be a cure in his life? A pill he can take and not be autistic anymore? Or that any of the bullshit you see in the media is ACTUALLY a cure? Probably not.
DIGRESSIVE RANT: I’m not saying that I’m going to “cure” Casey’s autism now, either. I think that mentality is dangerous and I’m sick to death of the Jenny McKarthys of the world making women feel like they aren’t “warriors” if their kid’s autism isn’t cured by some radical intervention of one sort or the other. I think if your kid is “cured” by just a diet change, just “music therapy (I’ve really heard that one before from someone telling me I’m an idiot for medicating my child)” they do not have the same autism that my child has. It doesn’t mean you don’t TRY all of those things. And if they help at all, then you do them. But to say you “cured” your child when there’s so many mothers who wish for nothing more is kind of a slap in the face. It’s not a cure all, Jenny, stop saying that to sell books. And definitely stop saying that vaccines are the cause. The blood of the kids who’s parents believe you and end up dieing of something that could have been eradicated LONG ago will be on your hands.
So I guess I need to shelf this whole damn idea and just accept it. And I think I have accepted that Casey has autism. But acceptance does not mean that you leave your emotional feelings towards autism, or whatever it is your dealing with, at the door. Acceptance doesn’t mean you have to be okay with it. I accepted my dad died soon after his passing, it doesn’t mean that even now, almost 17 years later, I don’t wish he was still around. Acceptance does not mean denial of things that are hard. It just means that you’re working on it.
Sure, I’m a better person because of what I’ve been through with Casey. A much better person, I think, than I ever would have been on my own. Because I am inherently selfish. But where does that mean that it’s okay that Casey has to take the fall because I’m sort of a whore?
I’m sorry. I had to get the feelings out so I didn’t carry them around with me for the rest of the day. I’ll eventually go back to crappy drawings and rants about my body hair.
I’m still looking for more diagnosis stories. You don’t realize how helpful they can be. I’m seeing that with the letters I have received just in the last day about the Jaron’s diagnosis story. It’s TOUGH to write about. I haven’t finished mine because it’s tough to go back there. But I think it’s helpful, especially to the hoards of parents who are going through it right now. If you’d like to cross post it, that’s fine, too. Just send me the link.