xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: Autism is not fair.

Saturday, July 3, 2010

Autism is not fair.

You know, it sucks. It really does. We can try to sugarcoat it, and we can emphasize the positive, and we can marvel in how our lives have been impacted as a result of our experience, but the bottom line is that the goddamn thing fucking sucks. It SUCKS. Because it's unfair. And it has no mercy. No matter what we do, despite our best efforts, it will always rule our lives.

Child 1 was diagnosed when he was 2 and 3/4. (He's 8 1/2 now) The first thing I did after the dx was to go online and find a support group. I found a great place, with great people, but as so often happens with online communities, particularly ones that are unmoderated, things went horribly awry and we needed to find ourselves a new home. So, I started my own board and a bunch of us jumped ship. That was 4 years ago and today we're a very tight knit, very close, VERY exclusive group of women, all of whom have at least one child somewhere on the spectrum. We call it Autism Island, or "The Island," and honestly, I have no idea why. We come and go, depending on what's going on in our lives, but whenever we come back, we're always welcomed with enthusiasm and open arms. We've formed some very unlikely friendships because of autism. I'm a dirty, pinko hippie from Berkeley and I have friends who live in the deep south and go to Tea Parties. We would never in a million years be friends under normal circumstances, but as long as we don't talk about politics, we're good. I suppose you could say that having formed these relationships is a way you can put a positive spin on autism, and that's true, but that doesn't change the fact that it still fucking sucks.

I've known a lot of these women for the whole 6 years that we've been on this autism journey; I've "watched" their children grow up and they've watched mine. In the beginning there was so much uncertainty; none of us had any idea what we were doing, our kids were so small and so fucking dysfunctional and what the hell would the future bring? Would they ever talk? Would they ever poop in the potty? Would they ever sleep through the night? WTF is with the hand flapping? Would they ever TALK???? We've agonized together about vaccines. We've tried therapies, we've tried vitamin supplements, we've tried Hyperbaric Oxygen chambers. We've discussed, at length, every detail of everything we've done, compared notes, watched progress, made suggestions. Some of them work, some of them don't, we've learned to stick with what works and dump what doesn't, and fuck 'em all if they disagree with any of it. Whatever else, though, we've been in it together.

First, a word about Child 1, although this post is not about him. He is awesome. So, so awesome. He's kind, he's super scary smart, he's wonderful, he's so FUCKING gorgeous. He's doing really well, but he has autism. He makes weird noises and he whispers to himself constantly. He'll always be "that weird kid." He may never "fit in." He doesn't understand NT kids and they don't understand him, but he'll find one or two other kids who "get" him and who like him despite his weirdness and he'll probably be fine. I worry about the teen years, but as for right now, he's awesome. So, so, SO awesome. Some of my friends haven't been so lucky, though, and this is the point of why I'm writing this. They haven't done anything very different, they haven't tried anything that we haven't tried, their kids are just as wonderful, just as beautiful and just as awesome. They work just as hard, probably harder, than we do, it's just that their genetic "roll of the dice," as it were, didn't come out as well as ours did, and it's not fair. It's not fair, the arbitrariness of this thing. It's not fair, the uncertainty that we're still plagued by, the new symptoms and behaviors that crop up out of nowhere. It's not fair that nobody in the medical or scientific community can give us any answers about the whys or the whats or the hows about this thing. We're on our own, us autie moms. We've only got each other and sometimes that's just not enough. I think about these moms who are my best friends in this and I wonder if they're bitter because my kid is doing well. Honestly, I would be bitter. I would be pissed. I would, and I do, want some fucking answers. Why does one kid do so well when the other kid doesn't? It's not fair, and it's not right. And it sucks.


Nobodyspecial said...

For what it's worth. I wanted to comment on a few things here on this topic. One is about you being "alone" or at least you and your friends on the Island being alone. I have to admit, since neither of my kids have autism, I feel like maybe I just can't relate, or if I do try to relate, it would seem like I was attempting to act as though I know what you are going through when I clearly do not. But there are a few things I see as similar. My son has a reading disability. We had to deal with the teachers insisting that he was "lazy" or that he wasn't applying himself. Then when we finally had him diagnosed we then had to fight them to teach him verbally. He was an outcast, he is a good boy, but can't read and never will be able to. We have had to come to grips with the idea that he will be living with us well beyond his high school years. We have to support all his dreams of becoming an engineer knowing that this may be a stretch for him to achieve.
No, he is not autistic, but maybe, just maybe, we have some common experiences that we can share so that at least there are a ways that parents of non autistic parents like me can be in your corner too.
Also, I wanted to share an experience I had in High School. I was fairly popular as a kid. But it was the "other" kids I floated to. They had different challenges that they had to deal with and I really liked that about them. For them it meant that they had a popular friend and someone who could deem them acceptable. For me, I got to have some really awesome friends. So, what I am getting at is that, somewhere there are kids like I was. I know this because my son the "outcast" has friends like that. For every 10 little stuck up brats, there is a good kid who befriends your awesome kid. So maybe you can take a little comfort in that.
I guess my main point is that your situation is intimidating to people who really want to show their support and be there for you but are afraid to try to relate for fear that you may find it patronizing. And that, I think, is why parents of autistic kids, or parents of other kids with special needs feel "alone".
Still, autism is unfair. And being a perfectly smart and decent kid who simply can't read is almost as unfair as that.

Unknown said...

That's an interesting perspective, actually. Do I seem intimidating? I don't mean me, necessarily, I probably don't seem very intimidating, but my situation does? I've never even considered that before. Interesting.

Nobodyspecial said...

Right, it's not you at all, you are the least intimidating person I know. But it's the situation. How can someone even begin to say they "know how you feel", or they "know what you are going through". They can't. It's intimidating.

Unknown said...

Well, they can't, but that doesn't stop them from trying! :D

Nibor said...

You don't offer a reaction that fits this post, but it's awesome. (((((you)))))

Nobodyspecial said...

LOL, well, try to take it in the spirit in which it is given. I've had people tell me that if my kid were theirs they would whip him into shape.... one of those people had their daughter get knocked up in colledge then have an abortion.... which is kinda worse if your family is devout Catholics.... so, I guess my point here is that people suck. :)

Unknown said...

@Nibor What do you mean?

@RWB (nice name, though) Yes, I think we can all universally agree that people suck :)

Nibor said...

I just meant that the "reaction" choices you have at the bottom of each post -- funny, cool, snarky, etc. -- don't fit this one. But I think it's powerful and heartfelt and honest and enlightening -- awesome in short.

Or did you mean what do I mean by (((((you)))))?

And I'm with you guys on the people sucking. (Who's the cynic now?)

Unknown said...

Oh those reactions! Yeah, probably right. Should I put "shut up!!" back?

I know what (((you))) means, it means you're grabbing my ass, right?

Nobodyspecial said...

That's what I always mean by (((you))). But I can't speak for others.

Anonymous said...

I can so relate to this. Unfortunately, I haven't found a tight group like you have, but I completely understand the "unfair" and overwhelmed feeling. And there's such a huge range of what autism looks like, that one mom's struggle is completely different than another's, yet the heartache is the same.

I'm going to go listen to sad music now.

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