28 September 2013

This week in Autism

What a week. OMG. At home, it was a hell of week. We spent all of Monday taking the ferry to the lower mainland so we could go to BC Children's hospital to see a specialist who apparently doesn't know what Celiac Disease is. Yeah. So that was fun. Nutshell: Something's wrong. Fucked if we know what it is.

Tuesday was an appointment with Snap's team. That's always fun because I can't take the kids, they can't do it here, and I can't get a babysitter. So Tony takes the afternoon off work. God bless the union for making that possible.

My new assistant is pregnant and missed two of her three days this week. The other assistant is sick. From the ferry ride. She has a terrible immune system. So while I usually have 29 hours in 4 days, this week we had 3.

And then today this story broke. A family with two autistic kids, twins, who are 16, had one of them surgically altered so that he can't scream so loudly. And the Internet went crazy. People who had never experienced the 100 dB screams 1000 times a day for 3 years jumped in to screech about what awful people they are. Many assumed they'd never tried to find out why he screamed. Many assumed they'd never tried any alternatives. Many didn't think that the potential hearing loss they were experiencing was relevant. Many didn't think that the comfort and well-being of the other boy was important. They just howled that these are awful parents no probably declaw their cats too.

Well fuck all y'all. 

If you haven't lived it, you don't know. Do you know that loud sudden noises are use to torture people? To totally fuck up their nervous system. It works too. If you consider judging these people, I want you to set up an alarm that shrieks at 100 dB once every minute for 17 hours a day. Then find a child who screams and cries every time the alarm goes off. Try to make food, play, eat, read Facebook, or even take a shit while this is happening. I dare you.

I have lived this. I continue to, but no longer that many times a day. Oh, and I don't know what pitch that kid shrieked at, but mine does it at the highest A on the piano. And for a year or so, he did it every six seconds that he was awake. Less now, but often enough. Maybe a couple hundred on a loud day and 15 on a quiet day. Now add to that that he can't be left alone.

The surgery that boy had reduced his need to scream. It is reversible. And he can still talk at normal levels. He talks more now, and he eats better. So how exactly do these parents suck? 

Right. They don't. But the judges of all things parent say they do. Why? It's simple, IMO. They see a loud kid and imagine what they would want to do in that situation. They'd want to shut that kid up at any cost, and they feel bad about that, so they imagine the worst in others so that they can feel morally superior.

Fuck 'em. 

And has anyone asked the boy how he feels about it? I'm thinking that needing to shriek about 90% less and being able to talk and eat are probably a good thing for him. Let's ask him. And if he can't answer, then it is his parents' and doctor's decision. And fuck you if you think you can judge.

And now, I have to go, because Crackle is having a 104 dB meltdown (according to my sound meter app) and Snap is ready to jump out a window to escape it. Tony and Pop are at Costco getting groceries. Someone offer me this surgery. See if I don't consider it.

edit: I approved two comments for this. One from Karen and one from KirbyCairo. Neither of them appeared. Not sure what's up. I'll try to restore them somehow. Karen asked for a link to this story, which I can't believe I didn't put in.
Here's Salon where they talk about the ethics of it.
Here's where I first saw it


Luna said...


Luna said...

Okay, the links aren't coming up, but they're in my history:

From Karen:
So, I have a funny relationship with comments. I always want in on the conversation. I think it's a little like engaging with cashiers and waiters. My kid asks me if I *must* make friends with everyone I meet? But at the same time, I feel like my opinion in most cases doesn't really mean shit. If I don't know anything about a topic, or know only the sensational surface, what does my opinion matter? I share this because I think too many people go off in comment sections, as you say, without all (or even any)facts.

Your first sentence about this"scandalous" family was surprising:surgically altered to not scream? I reacted. But then you give a bunch of intriguing details later, which changes my reaction: sounds miraculous! Where can I learn more about this?

Luna said...

From KirbyCairo:

Thanks for this. The sad truth is that most of us who do not live under such conditions have little idea about the daily challenges, but people without experience are always ready to spout off and judge others. Solidarity.